My Decade of Trying to Get the Door Open to the Unitarian Universalist Church (aka Ode to Sara Cloe)

A stylized UU Chalice with a small red heart in the flame.

I have been working on cleaning up and fixing my computer that I hadn’t used in over a year and found this essay I wrote maybe 2-3 years ago for a Beacon Press publication on the disability experience in religious organizations. I was told that the editors/authors got so many contributions, they changed their strategy to just include side bar pull quotes from the contributor’s essays. After reading it, I thought, “yeah, that is pretty spot on about what happened back then. What the hell. I’LL publish it.” I will say that my last interactions with the church were probably around 2017 or so. I do not know much about what the UUA or any individual churches have possibly done to be more inclusive of diverse members since then.

The first time I ever went to a Unitarian Universalist Church, the door was locked. 

I am blind and hearing impaired and at that time was pregnant with twins, and my parenting partner, Dwight, has quadriplegia and uses a wheelchair. We were excited to get up on Sunday morning and have this new experience. Both of us were new to the neighborhood, and really wanted to find a positive and supportive community with which to raise our children. I had researched Unitarian Universalism online and it looked exactly like what we wanted. A church community low on dogma, open to diverse families, and high on doing good deeds to make the world a better place. We had noticed a long, triple level ramp that had been built on the backside of the building as we had walked by in previous weeks and took it as a good sign that disabled people were welcome there. But when we arrived and climbed the long ramp on that first Sunday, the door wouldn’t open. We knocked but got no response. After waiting a few minutes, I told Dwight to wait there and I grabbed the underside of my protruding pregnant belly, as I had come to find was the only slightly comfortable way to walk anymore. I went back down the three levels of decline, worked my way around the church, and up the flight of stairs at the front of the building. I was welcomed when I entered the door, but not knowing the building myself, I had to ask several people to help me get to the back door where my partner waited so I could let him in. 

In the ten years that I participated in Unitarian Universalist church congregations and activities, my family and I faced a lot of locked doors—both real and metaphorical. We worked hard to open them. Sometimes we had success, sometimes we did not. Sometimes it even seemed as if our work only caused the doors to get additional, sturdier locks. After years of this exhausting work, slowly my family gave up. I was the last hold out, but finally I didn’t know why I was there anymore, either. This is my story of being a UU failure. And how the UU church failed me. 

My disability is a bit hard for people to understand. I have some vision and some hearing. Sometimes, it might have seemed like I had no problems at all hearing or seeing what was going on, other times I was unable to use my vision and hearing effectively without alternatives and accommodations. I have always understood that no one, not even my closest friends and family, can truly understand when I can or can’t see or hear something. They would regularly misinterpret when I needed accommodation or what kind. This has always been understandable to me, and I have never expected perfection. I never expect everyone I meet to be experts in ADA accessibility or in how blind, deaf or otherwise disabled people do everything. What I and most other disabled people like me hope for is to be included. We want to be welcomed and seen as contributing members just like anybody else. If something isn’t working, if we can’t access something, we want people around us to be willing to work it out with us until it works. To be adaptable to change and to prioritize inclusion. 

This is why we were not too phased when the accessible entrance door was locked. Maybe someone just forgot today or didn’t grab it yet. No problem. It barely raised concern for us, and we enjoyed the service and afterwards, a few people came up to us and politely welcomed us. So far so good. But then it was locked the next week, too. And a few after that. It was locked approximately half the time we went. When we finally brought it up to the minister, we just thought it was a procedural problem. We knew there were a rotating number of volunteers that probably got the church ready on Sunday morning. I thought it just needed to be added to a checklist and the problem would be solved. I was shocked at the response we got.

The interim minister was very defensive. He told us that the door was not being kept locked to keep us out on purpose, but that the door got stuck a lot. This didn’t quite make sense to me because I was often the one who went around and physically unlocked the latched door, but I do suppose it was possible. We told the minister that we did not think the door was being locked or stuck shut on purpose to keep us out, but that the effect was the same. We couldn’t get into the building. I had newborn twins at this time, and between the wheelchair, the twins in car seats and their stroller, and my poor vision, it was quite a difficult task to get in the church. And it also meant that Dwight, or anyone else who needed ramp access, could not get in on their own. We asked that a solution be found, not that blame be sought. The problem got marginally better over the next few years, but never completely got solved. Even when we did get in that entrance, there was no on there to greet us, or give us an order of service like at the other entrance. In an old church, we understood the difficulties of architectural accessibility. Again, we did not expect perfection. But it would have been nice to feel welcomed on Sunday mornings instead of worrying what rigamarole we might be faced with to even get in. 

If it was only the door, I think we could have managed it. But many other things became as much of a barrier as the locked door. It was a little bit like death by 1000 paper cuts–isolated incidences don’t individually seem that dramatic, but taken collectively, they wore us down. I have a severe/profound hearing loss and use hearing aids. I tried to mitigate my problems hearing the sermons by sitting up front. But it seemed to cause problems with the flow in the aisles when Dwight’s wheelchair blocked the aisle. There were spaces for wheelchairs in back, but then I would really just be sitting there, cut off from both the visual and audio aspects of the service. I found that the sermon transcripts were available to read after the service. This made me have an idea. Could I possibly get the sermon sent to me beforehand in an email? Then I could read along with it by having my laptop speech reader read it to me. A very kind woman asked the minister if he could do this. He declined, saying there was no way he could remember in time and have it ready even 5 minutes before the service. This was a different minister than the one who we discussed the stuck door with. These kinds of responses almost physically hurt, like punches to the stomach. They made me feel like I was asking for too much, like I didn’t matter, and like I wasn’t really wanted there. 

The reason I stayed so long and kept trying were because of two things: One, this response to disability is not rare, it is universal in many places, so why would it be any different in this community? And the most important reason, because Dwight and I had champions there. There were a few people who always stood up for us and always tried to make things work with us. These were both individual congregants and sometimes staff. Our biggest champion in our early UU days was the Religious Education Director, Sara Cloe. If not for Sara, we would not have lasted more than maybe a few months. But Sara helped advocate for an assistive listening device for me and other hard of hearing folks, she advocated for the parish house to have a ramp, she sometimes advocated for rides for us when off grounds activities were occurring that we couldn’t get to on our own. She even advocated for a covenant group to be made to help specifically include us.

One of our problems was that when activities, such as covenant groups happen at people’s houses, we couldn’t go because the house would not be wheelchair accessible or on a bus line. Sara made it so a covenant group happened at the church, she even arranged childcare. She called it the “Family Covenant Group” and we did make friends with those families that I still care about and keep in touch with to this day. It was one of the lasting gifts that came out of our UU experience. 

Another example about how things aren’t always perfect but can be made to work if people work together is our experience with the UU Family Camp. There was no way Dwight could go to family camp due to the inaccessibility of the sleeping arrangements and bathrooms, but my young twins and I went. Sometimes, when a disabled person has never experienced something, it is impossible to know what you might need as far as accommodations. I had never attended anything like a church camp before. This was also the first year that this camp was put on by the church, so kinks were inevitable. On the first morning, I went down with my kids to eat breakfast in the dining hall and then went back to the room I was staying in for just a few minutes to drop off some things and let my newly potty-trained toddlers hit the rest room. When I came out, everyone was gone. I didn’t know where they were so started walking around. Then my kids started happily playing in the sand volleyball court. So, we just stayed there and played. I didn’t really know what I was supposed to do. When lunch time came around, the people were back in the dining hall, so we returned there, and I got so busy just trying to figure out what the food was and help my kids through the buffet line that no one really talked to me and I didn’t get a chance to ask questions. Then, in the afternoon, everyone was gone again. Poof! So, we played on a nearby playground and just entertained ourselves. I was getting really distraught, though. It was just exhausting to try to figure out this campground and keep track of my toddlers and just figure out my own way around. And no one seemed to notice or care that we were struggling through the buffet line and all by ourselves all day. I ended up calling Dwight and asking him to come pick us up 2 days early. I made some excuse and left. 

I felt like I failed but I didn’t exactly know how or why or what to do to prevent it. It wasn’t until a year later that I found out that there was a print agenda of activities with a map of where they would be that I was never given nor told about. They were all off doing different camp and religious activities and I was left behind. I did not know there was going to be formal activities that people would all go to together. Sometimes you don’t know what to ask! Again, it was Sara Cloe that came to my rescue and gave me the courage to try again. I told her what would be helpful to me. Could someone tell me what food is in the buffet line and perhaps help my kids and I get through it? Could someone just let me know what is on the itinerary and walk me to the activities? Sara and her two teenaged daughters completely came through for me that next year and the following year as well. The girls were always there the instant I came into the dining hall to grab a plate for one of my kids and tell me what food was being served. I always knew what activities were going on and where they were. I was able to participate in many activities and we all had a very good time. I was also able to help clean up when I was given the chance to be shown where to put things. 

It was important to me that I was able to contribute to the community as well. A teacher by trade and training, I very much enjoyed teaching different religious education classes and working on the religious education committee. Sara was always willing to work with me. Sometimes, we would still be excluded, though. In each church service, we were told that if we wanted to be members, we should talk to a board member to take the next steps. Over the years, I asked to become a member on at least four occasions, but no board member ever followed through with me to tell me what it was that I needed to do. Sometimes, several people would go to an indoor playground after the service together so their kids could play, but we could not get there without a car. I understand that not everyone has a place in their car for 4 or 5 extra people, but when I suggested a different indoor playground that I could easily get to by light rail, I was told they didn’t like that one and they were sorry we just couldn’t go. I didn’t care so much, but it was hard on my children who heard through the kids about the plans and knew they weren’t going to be invited. 

When my kids were about 5, several things changed in my life. Dwight and I were and still are friends and parenting partners. We never had a romantic or marriage type relationship. We were a family unit, albeit untraditional. I came to marry my now husband, Nik, and we had a child together. Around this same time, Dwight had become less interested in the UU church. He went largely because of me, and although he did try to stay engaged for several years, he tired of the exclusion. Because of that and due to additional health issues, he no longer wanted to put forth the energy to go. I kept going, but I imagine it looked as though I swiped out Dwight for Nik. Nik is totally blind andhas some facial deformity. When Nik started going to church with me, the tone seemed to change for many people. It felt like we were even more excluded. At first, I thought it might be that it looked like I divorced Dwight and quickly married Nik and it was just odd for people who maybe had some loyalty to Dwight, who was no longer around. But he was around in MY life, and so I tried to explain that to people in the nicest way possible. I did not toss him out for another man! We are all still co-parenting together! Its good, no worries!

But then another church member had a very public and contentious divorce. And I saw how people supported both her and her ex-husband. It did not seem like people were too judgmental about divorce here. So, what was wrong? People barely said “hi” to us. They didn’t engage us hardly at all anymore. It wasn’t everyone, but the climate had changed. I had also noticed it with the kids’ school as well. Nik is as outgoing and as friendly as they come, so what gives? I slowly came to the conclusion that it was because of how we now looked. Before, Dwight just was a basically good-looking guy sitting in a chair. With Dwight, my disabilities were somewhat more hidden because since he could see, he helped me out a lot. With Nik, he was Capital D-Disabled! There was no denying it. He looked different, he moved differently, and he was no help to me visually, so all of my low vision quirks were in full view. I had caught the disability cooties from Nik, and we made people much more uncomfortable than we seemed to when I was “coupled” with Dwight. One time, a person whom I had been acquainted with for years came up to me and started telling me about another blind mom who used to come to church with her husband who used a wheelchair. It took me a second to realize that he was talking about me and didn’t realize I was the same person. This slammed home for me that the change really had nothing to do with any “divorce” people may have assumed I had. Some people just really never saw past the disability at all. 

This was when we changed churches, just to try something new. We went to a much larger UU church in the downtown of our metro area. Some things were instantly better here. They had assistive listening devices that mostly actually worked. At the old UU church, they were either broken, low on battery power or those speaking refused to use the microphones. The new church had braille orders of service and large print and braille songbooks. Instantly, we felt like we were considered and that we were welcome. There were a few people who were genuinely kind to us, one was again the religious education director. But the luster soon faded to a grey confusion. 

On one of our first visits, a congregant came up to us and wanted us to join his group for disabled UUs. We were delighted. He was also vision and hearing impaired and was struggling to fit in. We also met another man who used a wheelchair. This man had also formerly gone to a smaller church. He said he quit going when he had gone to an evening event and had to knock on several windows before anyone would open the accessible door and let him in. (“Ah! That is familiar,” I shared.) He told a story about how he was out in the cold and rain and was literally having temperature issues and getting ill waiting and pounding on the basement windows while his wheelchair got stuck in the mud. That was his final straw at that church. We met and exchanged all kinds of ideas about how to make the church more welcoming to parishioners with disabilities. All of us had stories like these, and all of us sensed this defensiveness that occurred when we talked to the powers that be in the church about these issues. Most importantly, all of us had tried to find community and make friends but had mostly had the experience of just not getting past a very basic polite “hello” with most people. People were rarely openly mean, but barely said more than “hi” to us. 

We decided that our approach should be to be more proactive. Instead of waiting for things to become problems and then be constantly put in the position of complaining, the UU Disability Committee (which we had invented on our own) would serve the church by helping it to become more accessible. We could do an accessibility audit and suggest changes to be made, and when disabled people had accessibility issues, they could come to us and we would help them work it out. We would also offer educational programs and events for the church and invite them into our world with fun events. We were excited to take this on. All we needed next was to make it official with the endorsement and support of the minister and board. 

We couldn’t even get a meeting. Months went by and the minister was always too busy to meet with us and finally told us it wasn’t a priority at this time. Even though essentially we would be doing all the work, they didn’t want us to proceed.They felt it was too much of an undertaking. They were not even willing to put a blurb in the newsletter saying that we were a committee who could help with accessibility concerns.  There was only so much we could do on our own. 

And then one day I was in my son’s RE classroom and Nik had attended the service. When we met afterwards, he was upset. He said that he really enjoyed the sermon. The minister had talked about growing up black in America and the oppression he faced. Nik identified with a lot of it because of his own experiences as a blind person. As disabled people, we are a minority group that faces rampant oppression and civil rights violations. Although not identical, we face some of the same types of things as racial and cultural minorities, LGBTQ+ populations, and others. Nik greeted the minister on the way out and complimented the sermon. He said he found some common ground with it and identified with it. The minister, Nik reported, acted disgusted by what he said. He said, “I don’t possibly see how being blind is anything like being black,” as he walked off. He refused to shake Nik’s hand. 

I know that one has to be very careful not to give the impression that because you may share some experiences of oppression, that does not mean you know what it was like to be black if you are not black. Or that you know what it is like to be disabled if you are not. It is also very important that we do not play Oppression Olympics, comparing who has the worst form of oppression as if it is a contest. But minority groups do share some common experiences that could strengthen and unite us if we could find those and work together. I did not hear the conversation, and I suppose it is possible that Nik’s wording was jarring. He is an immigrant and English is his second language. But he is also extremely mild mannered, and I have rarely ever heard him say anything offensive. I felt like at the very least, the minister could have talked to him about it and told him why it had offended him. Maybe he was just having an off day. But that conversation, coupled with the fact that this minister refused to meet with our disability committee, turned Nik off completely. After several years of trying, first Dwight had given up on the UUs and now Nik was also done.

But I kept going. I had another round in me. The answer to my prayers had dropped in my lap. A group from the Unitarian Universalist Association was looking for a project manager for the (now named) Accessibility and Inclusion Ministry (AIM). It was exactly what we were trying to do at our church, but on a national level. Modeled after the Welcoming Church certification that aided churches to implement steps to make them be more welcoming to congregants in the LGBTQ+ community, it laid out a series of steps for congregations to be more welcoming and accessible to people with disabilities. The team were largely disabled folks, and they were wonderful to work for. I felt like I had real allies who had some power and influence, and this project was exactly what the UUs needed. 

My job was to support 7 pilot congregations who had volunteered to go through the program. We were also modifying the program as it went along based of the experiences of these congregations, as well as trying to learn where the challenges were. Within the 7 congregations were some highly committed individuals, both disabled and nondisabled, who wanted to make their churches more accessible and inclusive. I would talk to them on a weekly or biweekly basis and help them through each step of the certification process. They would work on ADA assessments of their programs, church sermons that centered the disability experience, and classes that helped educate about best practices in accessibility and inclusion. The idea was not for each congregation to become perfectly accessible, but to have a plan to constantly prioritize and improve access and inclusion on an ongoing basis. 

Some of the congregations had real challenges, like churches on the historical register that could not be easily architecturally modified. Budget was always an issue as well. But often the biggest challenge seemed to me that no one really cared, beyond the committee. Most of the tension was between the committees who wanted to implement the AIM program and the church staff and board of directors. Some challenges were just based on silliness. One church had a large lower and small upper parking lot. The larger lower parking lot had a long flight of outdoor cement steps to get to the church entrance. The smaller upper parking lot had no such barrier to entrance, but it was reserved for the minister and staff. It seemed easy enough to me to change at least some of the upper parking lot into disabled parking. But the ministry refused to do that, because then the entire staff wouldn’t fit up there and they wanted that perk. They chose to close off their church to disabled and elderly people to keep their parking perk. Many times, it isn’t that something can’t be done, it is that it is just not important to anyone. 

Another issue that came up often was the issue of disability accommodations being seen as “extra” and “special” such that they were funded by much smaller discretionary “pastoral care” funding rather than incorporated into the operating budget. People with disabilities do not have special needs, their needs are the same as everyone else. Everyone needs accommodations to be able to participate in church life. How narrowly or widelythe church decides to throw out a net to accommodate people has more to do with politics than disability. When disability accommodations are framed as “pastoral care,” it says a lot about what type of people are prioritized as being welcome in the church. If printed orders of service are an operating cost, why would braille or digital orders of service not also be an operating cost? Both are accommodations. If parking lots are operating costs, why would there need to be a special fundraiser to make accessible parking spaces? If PA systems are an operating cost, why aren’t Assistive Listening Devices? Why are accommodations for nondisabled people expected but those for disabled folks are optional and “extra?” Many of them, when integrated from the ground up, don’t even cost any more than more typical accommodations. Budget restraints are difficult everywhere, but people with disabilities should not always be the group that is sacrificed, burdened, and excluded by those budget restraints. Singling out one group for these types of burdens is the very definition of systemic oppression. 

Because of some personal, health and job shenanigans in my life at the time, I found myself working four part-time jobs. I needed to lose one. I chose to quit the UUA AIM project, even though I really thought my colleagues were first rate and the project was an important one. But I was just exhausted and disheartened by the UUs. It had been a decade, and those thousand paper cuts, of which only a small fraction are explained here, were starting to really burn. And now I saw them everywhere, on a national level and it was overwhelming. When I quit working for the UUA, I pretty much faded out of the church altogether. It was too tiring, and as a Deafblind person, I had also to advocate for myself in health care, in my children’s education, in my career and in just walking down the street being Deafblind. It was exhausting. Dealing with the UUs was optional; the others often weren’t.

But there was something else. On the whole, the UUs I met were not any better or worse than the general population as far as how they chose to include disabled people. But there were a couple of differences that were hard for me to take. The first is that there is no ADA or other disability civil rights laws to fall back on when dealing with religious organizations. There are some elements of the ADA that churches need to follow in regard to employment, but other than that, they are exempt. This means that all efforts to make their churches welcoming and meet basic legal guidelines for accessibility are voluntary. And it appears that they largely just didn’t want to. Whenever I hear anyone say that no one is against the disabled, and people just don’ t know any better and are confused about the ADA, I think of the UUs. The UUs could have voluntarily done a lot to include disabled folks, had a lot of resources and help to learn how, and simply chose not to. 

The other thing that is different about the UUs than the general population is the defensiveness and hypocrisy that I saw over and over again. Once I wrote about my confusion about the UU church in a blog post titled, “I Think I Am an Alien.” Somehow, it got to the minister. I was just about to have my twins dedicated in a UU church service when he wrote to me asking how I could want to have my kids dedicated if I hated the church so much. But I never hated the church. I felt like the church hated me and people like me and I didn’t know how to change it. I broke down and cried, I was so confused. When I tried to make things work for me, I was met with such defensiveness and derision that I wasn’t grateful enough for the little things someone might have already done for me. I just didn’t understand how to “be” in the church, nor how to take seriouslywhat they proclaimed. This is the church that believes in the inherent dignity and worth of each person. This is the church that promotes justice, equality and interdependence. This is the church that promotes acceptance of one another. To see these principles over and over, and yet to feel like there is no place for you in this church hurts. To have worked so hard to try to help the church become welcoming and to be cast off as unimportant hurts. It hurts a lot. 

There are a lot of nice, good people in the UU church. As I write this, I imagine that maybe some people reading knew me in the church and were even nice to me and tried to include me and my family. And some really did and I appreciate them. There may be others who may remember me and my family a bit and think that they didn’t try very hard to know me, or didn’t really think about me at all. And I get that and that is ok, too. We have busy lives; we can’t know everyone and help everyone. I’m certainly not the center of the universe. Some may be reading and might be thinking, “I had no idea anything like this happened in my church.” And here is where we might find the crux of the problem. 

When I think back on my ten years of UU experiences at multiple different congregations and levels of leadership, I have both good and bad memories. Again, there are a lot of good people in the church. But as I try to find the running theme through what I experienced and what many others with disabilities experienced, the common thread seems to beleadership failures. People didn’t know about my issues because they were never told, nor did they see any action taken by leadership to mitigate them. Time and time again, on all levels, congregants, both disabled and nondisabled tried to improve things in big and small ways, but when they went to leadership, it fell through. I can only theorize about why this might be the case. 

The only thing I can come up with is this story I remember from early on in my UU experience. We had a service where the minister answered anonymous questions that people had submitted to a box the week before. He picked out a question and read it to himself and sighed. The congregation laughed. I wondered what difficult question this could be? It turned out that it was my question. I had asked why there were not more racial minorities and disabled folks in the congregation or UU at large and what could be done to be more inclusive? He paused a minute and then answered. 

“This is up to you,” he said. “There is nothing leaders can do about it without you all. It has to come from you.” And he shoved the question away and picked another one.

In a democratic organization of associations like the UUA, individuals do have a lot of responsibility for what happens within. And it does take everyone to do the work of change and to make an organization more inclusive of all types of people. But leadership has to lead. In all of my work within the UU organizations, I always had individual supporters. I had Sara Cloe, and Rev. Patti Pomerantz was a great supporter in her all-too-brief temporary tenure at one of my churches, as were many individual congregants. People wished us well when we tried to have the Disability Committee and the AIM project. Individuals offered support. But often, it stopped with leadership. We were cast aside by the leadership who were often “too busy” for people with disabilities and the budget was “too tight” to touch. Leaders are put in these positions by voters to lead and to see the big picture and help set priorities, organize and direct action and set a standard. It is hard to reach the correct balance of being directed by constituents and over-directing them. It isn’t always going to be perfect. But when a concerted effort needs to happen to effect change, leaders need to stand up and set the standard. It feels to me like in the UU organizations; the balance was always off. The leaders only reacted to what they felt was the hot social issue at the time. Disability inclusion was never a hot issue to them. 

It has been several years since I effectively ended my participation with the church. I hope that perhaps changes for the better have been made in those years. But I was disheartened to find out that my former AIM project, which I had such high hopes for, has ended its certification program after only four congregations became certified after a decade of work. I still feel that there are a lot of well-meaning people in the church who do want to see congregational life that is more welcoming and inclusive of people with disabilities and other minorities.But they have not been able to effectively organize for more immediate action because they do not appear to have much support from their leaders. One thing that attracted me to the UUs and that I also enjoyed while there was this notion that everyone is choosing to be here, everyone has come together to do good, to be a good person, to feel good and help others feel good. That is very powerful and can be a huge motivation for change. But only if the need to be seen as good doesn’t become a barrier to actually doing good works. 

This reminds me of one more “gut punch” story I will share. Once, a very nice woman from church helped me out when I was in a bind by babysitting my children for an afternoon. A few days later, I was at the church for an RE meeting and I saw her in a pastoral care committee meeting. I stopped in and said hi to the women there and thanked her again for babysitting for me. I told her that my kids enjoyed their time with her, and that my son had drawn her a picture, and I would bring it in for her on Sunday. Another woman in the group said, “Aw, that’s what happens when they get too attached.” They all laughed and went on to talk about how they have to be careful when they help “those people” and set boundaries, so “they” don’t have unrealistic expectations and depend on pastoral care too much. I froze; the wind seemed to leave my lungs as I listened to them talk about me and my family, along with others who might have received pastoral care in the third person right in front of me. I had not known I was a “project” for them. I thought my family and I had just made a new friend and someday, we would of course return the favor back to her like friends do. I felt like I would never be seen as a fellow congregant who had gifts to contribute. It felt like my only role for them was to be needy so they could feel like they had done good deeds.  I felt very much “othered” and I vowed that I would never seek help from the church for anything anymore. 

There are many disabled people out there that are willing to help, even willing to lead the way. They have the skills and knowledge to not only help to make congregations more accessible but have gifts to offer in every aspect of UU life. Some are teachers, accountants, computer programmers, tech folks, et cetera, that have material skills that can assist congregations. Others will be counselors and spiritual leaders. Instead of being fearful of what we will take from you, let us also give to you. When we are ignored and we spend all of our time trying to knock down the barriers preventing us from joining you, all of Unitarian Universalism missed out on a rich and vibrant community of people. 

It’s all there for you if you will just unlock the doors. 

So Long and Thanks for All the…Crazy Weather?… Styrofoam? …Booze Invites? …Solid Organs?

View from (Avery’s) plane flying out of Omaha.

My ode to my year back in the heartland is hard to sum up into one experience. It’s been a weird year.

But yesterday, Nik and I went to Bruegger’s Bagels for lunch. After a bit of shenanigans trying to find the door from a steep downhill with majorly F-ed up sidewalks (typical of Omaha), we walked into the place having never been there before or knowing how it worked. Do we sit down? Order at a counter? Where is the counter? Are there seats or is this mostly a drive thru?

But this dude-bro kid who worked there had us covered. He greeted us when we walked in and directed us to the counter. He went over menu items with us and when Nik ordered coffee, he offered to make it behind the counter for him rather than having us make it ourselves at the coffee kiosk. He took Nik’s card, swung the point of sale thing around and tapped it himself. He offered to bring out our food to the table, and then when he did that, he offered to look and tell us which bagel was which. Instead of dealing with five or six minor struggles as blind folks in that place, it was chill.

“That was so Omaha,” I remarked.

“What do you mean?” Asked Nik, who has spent far less time here than I had.

I explained that that kid probably hasn’t had any particular training about blind people specifically. He was probably in high school. But he actually looked at us as people and thought for a couple of seconds about what we would have trouble doing in that setting and thought of quick solutions, communicated them, mostly by asking if this is what we would want, and then just did them if we agreed that it would be helpful, and didn’t if we said ‘No, thanks. We’ve got it.”

I’m not going to say that NEVER happens in Portland. It does sometimes. But it is not the norm. It doesn’t always happen in Omaha, either. But it is more the norm. The difference was really obvious. And also…it took me back to my life in the Midwest before. I had lived in the my first 27 years—half my life—in “The Heartland.” Iowa for 11 years, Kansas for about 4, and Nebraska for about 13 (now 14).

In fact, if I hadn’t come to Omaha this year, I would have crossed the threshold of having lived on the west coast longer than I lived in the Midwest. But alas, now I missed it and will have to wait another year before I hit it again. I did not notice the change in how I was treated as a disabled person in Portland as compared to here when I moved there at age 27. It took years before I could look back and see it. It isn’t like Portlanders are mean. Some are very nice and many have been very helpful. It is mor that they are unintentionally oblivious and keep to themselves. They don’t get too into your business. They largely don’t judge you. But there is kind of an “arms length” unwritten rule. It’s very live and let live. It was weird to think that I used to live with this amount of consideration all the time and never really thought about it.

It was also a great deal of comfort that when I basically crashed into Omaha with no notice, I had a myriad of extended family and high school friends—some of whom I hadn’t really spoken to much in 30 years—who were willing to step in and do just about anything to help. There is something to be said for having family close by, and I haven’t had much of that in Portland. Although there have been friends in Portland who have gone above and beyond at times when there have been emergency situations.

People talk about Nebraska as a red state, and a backwards state. And I will say that there is a bit of feeling like I’ve gone back in time here. For example, I have not been served take out in styrofoam containers since 1997. It’s also a bit weird to see plastic grocery bags. But its also nice to see that it doesn’t smell like weed everywhere and—although there is DRINKING here (ahem, no shortage of that)—there is not too many people who you are trying to deal with while they are stoned. (Full disclosure: I have seen a couple of people on the local buses who were kind of nodding out or doing the fentanyl fold. It’s not like it’s pristine here or anything. And there are homeless folks here, too. They are just better hidden. And there are a LOT of people who are not technically homeless but who are barely making it. The poverty here is pretty visible. Or maybe I’m just someone a lot of people who are upon tough times like to talk to.)

Blue dot yard signs were very prevalent throughout Omaha before the election.

As far as the red state thing, well, Omaha is blue mostly. I did get to hang out with the Douglas County Dems a bit and was on their message group. I was limited in what I could do because I am not a registered democrat in Nebraska, but was able to help with voter registration a bit. When you are blue in a red state, there is more unity and more cooperation. My sister brought this up (she is a precinct leader in Kansas, also a red state with blue pockets.) In a predominately blue state like Oregon, there is not much to lose so then you get in-fighting over HOW blue you need to be and hair splitting commences. In Omaha, with the split electoral votes and the “blue dot” campaigns this year, there is a cohesiveness you don’t find as much in Oregon. They don’t have time for divisiveness. (And even though the overall election did not go as they had wanted, the Douglas County Dems did bring home that blue dot they worked so hard for. They did a good job.)

I’ve had the nagging feeling lately that I didn’t do enough here. Like I didn’t take full advantage of my time. I should have hung out with friends and family more. Traveled to my other Midwest spots like Lincoln and Lawrence, KS. Gone out to more neighborhood spots or I did spent an awful lot of time alone in my apartment reading books, listening to podcasts and watching movies. It may sound a bit sad, but it was mostly great. Yes, there were times I did get bored and I always knew that this was not real life and a person cannot go on forever like this, but as long as I kept it to just this little weird slice of my life in Omaha, I thought it was ok and mostly fabulous, actually. I came from a household, the last 2 decades, that had anywhere from 5-7 people living in it and 2-6 animals as well. It was never quiet. I was never alone. I think mostly it was a house full of joy and love, but there is something to be said for down time. Maybe Omaha was catch-up for the last 20 years.

But I started looking back at old pictures and sort of taking stock of what I have done in Omaha this year. It’s not a packed schedule every day, but it was a good amount of stuff. This might not be of interest to anyone but it helps me to sort of collect all of the experiences I’ve had here in one place. (No, I promise I won’t list every book or podcast I read-I read podcasts!—but there were some really interesting ones.)

  • I flew here with about 4 hours notice and got a kidney transplant
  • I got an apartment arranged right quick (the process was already started, but I had to make adjustments) so my poor husband and child did not have to spend a 20th day in a hotel.
  • I went to the ER, had a blood clot, and spent a couple of nights in the ICU. (Dwight Lay and his cousin, Karen Guilfoyle kept me company on the phone while I was flat on my back and miserable.)
  • Among all of that, I filled out my 2 college kids’ FAFSA, which last year was a flippin’ dumpster fire of a mess that took weeks. And, hey! I’ve already finished this year’s, which was much easier.
  • I went in the hospital a few more times until they figured out why my kidney wasn’t working. I had to swap out oral meds for IV meds…for the rest of my life. I got a port.
  • The one kid that got suddenly left at home quickly slid right off the rails and crashed to the ground and almost flunked out of high school. Myself (and a lot of other people) swooped in to help her do damage control and get more situated.
  • I was able to visit my dad twice before he died in March.This was also with the help of a lot of people.
  • My dad died. So there was that. There was also a complicated estate process, that my sister has been dealing with and is still not quite through. Even though I didn’t really bear the responsibility of it, the whole thing was stressful and maddening.
  • I spent hours upon hours upon hours not only exercising and walking for my own recovery but working with my guide dog. Like, this was one of the predominate things I did every day. I did sit down exercises, I swam, I walked the halls, I walked miles outside and worked with that dog.
  • I worked a lot to get my kid graduated from high school (yes, that kid) and worked with her on college applications, scholarships and financial aid, housing, graduation, orientation (although Nik actually went with her) and moving in (again, I helped organize, Nik did the physical work).
  • I got my youngest kid into public high school and arranged all of his testing and stuff he needed to come into public school with no official records.
  • I got the taxes done.
  • I went to see Stevie Nicks and CHI Health Center, I went to the Henry Doorly Zoo, Lauritzen Gardens, Illuminarium Science Center, Jocelyn Art Museum, and walked the Heartland of America Park.
  • I walked the Bob Kerry Pedestrian Bridge, went to the UP museum, General Dodge House, Rails West, the Brigant House, Omni Center, Bayliss Park and the 100s block in Council Bluffs. I also went to the courthouse and got my birth certificate and ate good BBQ there. I did drive by my childhood home as well.
  • I got new skates and skated numerous times until the last couple of months.
  • I had lunch with friends and relatives a handful of times and ate at several good and new to me restaurants.
  • I visited Crescent, IA and my paternal grandparents homes and graves with Nik and my kid (who wanted to go there)
  • I visited (at least walked around the outside of) my high school and elementary school, my Omaha childhood home, Zorinsky Lake, the Westroads and Regency Malls, the Taco Bell I used to work at, the Mutual of Omaha I used to work at, and other such places.
  • I caught up on all my dental work which I was behind on. I have healthy teeth now.
  • I did a fuck ton tremendous amount of blood tests, doctors appointments, infusion visits, minor procedures, MRIs, cancer screenings, Covid/flu tests and vaccines, etc. There was rarely a week that went by when I did not have a medical appointment.
  • Although the bulk of this was Nik, I did occasionally help out with the business, consulting and signing off on client plans, getting paperwork together for taxes and bookkeeping, and helping when our main contractor moved on and we had to hurry up and hire new folks to replace him.
  • I did a deep dive into trans issues. I read a ton. I would never reject my trans child no matter what, but it was important that I really understand all sides of the issue, medical implications, best practices, etc.
  • I talked to my family nearly every day. I kept up with all of their goings on, new schools, new jobs, moving ins, having enough money, paperwork signed, etc.
  • I organized and packed up (with Nik’s help packing) my move out and extraction from Omaha.

Starting in about early October, I started having some medical complications again. I was sick with a cough that wouldn’t go away. I had a UTI that was treated with antibiotics, I have an ongoing issue with an abdominal wall hernia around my kidney that I’m going to have to get surgery for. I had a bit of a cancer scare where I had to keep going back and do more mammograms and U/S and they came up questionable. (But that appears to be resolved for now.) So, I think I’m feeling like I haven’t done enough because I was on a good trajectory and then it kind of died off and went splat.

It was a bit depressing and I felt like I was kind of failing at everything I tried. (I did, in fact, visit Lincoln, but had to almost immediately turn around and come back due to health issues.) I had to cancel on family member’s invitations. I never did get to vote in Omaha, but did manage to vote via mail in Oregon. But the last few months especially have felt kind of gloomy. I had hopes that I’d come back healthier than I had been in a long time. But the honest truth is that right now I’m sicker than before transplant. It’s not like there was any other option, because I was headed nowhere but down without a transplant, but you always hope for the best outcome and have high expectations. I’ve had to adjust, and all my problems are coming home with me for further sorting into what can be mitigated and what has to be dealt with as a new reality. No super pigg for me…yet. You never know.

So, heading out of the big Omaha to go back to the Big Oregon is a needed change and push to just keep going. I haven’t seen one of my kids in 4 months, the other in 8 months, and the third (yes, that one) since December 21, 2023 at 2:00am when I waved at her in her upstairs bedroom window as I got into an Uber to go to the airport for my transplant.

I’m going home December 21, 2024.

Hugging my little apartment good bye right before the truck taking my stuff came and I left to go babysit the dogs in the kidney hotel. It served me well.

I look forward to green trees and nature i can get to, quiet neighborhoods, being able to go on a bus or train every 15 minutes, Drivers who stop at stop lights and realize pedestrians exist. Christmas since I totally missed it last year, having the option to visit my kids in college or go to the coast or the mountains when I want, talking to my family for as long as I want and not on a little screen, just all that incidental stuff that happens in real life in families, and moving on with my life to its next chapter, even though this post transplant chapter will never be over.

But I am forever grateful to Omaha/Council Bluffs and all the people here. The University of Nebraska Medical Center and Lied Transplant Center. My donor, whomever they may be and their family for making the decision that allowed me a continued quality of life, whatever that may be. I’m still here and can figure out ways to be comfortable, kind to people, and maybe even contribute something. My friends and family who reached out even when I didn’t always reach back in any sort of timely manner. All the interesting weather. Freezing, snow, tornadoes, rain, heat, wind, more wind, humidity, big blue skies, and wide open spaces.

The Midwest has its issues, which makes it extremely difficult for me to return permanently, but it’s also just very good at heart. Do not even ever try to fuck with me about the flyover states and the corn and the red and the hickness and the flat boring plains and all that noise, cuz I might have to cut a bitch. The people of the plains—of which I am one—were here for me in ways the west coast never has been. They probably saved my life. It’s always home for me.

And with that, I and my new Midwest kidney bid my farewells to my childhood home. But I will be back.

Some pics from my time in Omaha:

Religion, Mormon Stories, and Some Daddy Issues (Part 1)

From JW’s “My Book of Bible Stories” Jezebel gets thrown out the window and eaten by dogs for making that face, I think. Women don’t fare well in this book. Or in religion in general.

This year is going to go down in the history of my life as just one of those strange years. Like 1981, or 1988, or 2004 which all were life changing years.

The first six months was pretty much all health stuff. Trying to survive the transplant, then doing all the stuff I was supposed to do to monitor it. Nik was here, we were just on autopilot going from appointment to appointment, hospitalization to hospitalization. My dad died in there as well so there were some visits and stuff but it was mostly a blur. When Nik left, I did need to take a few weeks to learn how to take care of myself. I was cooking and cleaning and taking the dog out and the trash out for the first time in over a year or two. I had to build up an endurance for those things and then that got easier.

Then I’ve been hanging out here with nothing much to do but go to infusion every 28 days and the lab every 28 days in between those, a couple of appointments here and there. I still spend a lot of time exercising and trying to improve my stamina and strength. I still work on my guide dog. I still do a lot of admin work for the fam and some for the biz. I pay college fees, enroll Avery in school and talk to his advisors, make sure everyone has their vaccination appointments, etc. I still go over some clients with Nik and we exchange ideas about how to mitigate their challenges and advocate for some of their issues.

But mostly, I have loved the quiet. Like, LOVED it. I go entire days without wearing my hearing aids. I go entire days without dealing with anyone else’s shit except my own family, who I generally talk to daily at least for a bit. I feel like I haven’t sat with myself, with time to think and just be in the quiet in years. Decades. Mostly because I haven’t.

I have gone out with some friends and family here and I have thoroughly enjoyed that. If they come knocking, I haven’t told them no, but I haven’t really reached out either. For no real reason except: It’s nice and peaceful here! I have only rarely been bored or lonely. Most of the time, I’m completely satisfied sitting here with my dog, reading or listening to podcasts while I cook or do yoga or fold laundry. If I was going to stay here forever, I’d have to snap out of this at some point and go do something. But since I know this time is finite, I’ve sort of given myself permission to chill and enjoy it.

Lately I’ve gone down a Mormon rabbit hole. It started when my son Avery wanted to go to Crescent and visit the cemetery there and I was reminded of my Jehovah’s Witness grandparents but also my Mormon ancestors. My Great Great Great Grandfather was a pioneer Mormon named David Wilding, who traveled from England with Brigham Young in the 1830s to Nauvoo, the area where Joseph Smith was trying to settle but then was killed and the Mormon’s expelled. They traveled across Iowa in the winter and came to this Council Bluffs/ Omaha area where they camped in what they called Winter Quarters before in shifts, they traveled on to Salt Lake City. David Wilding also traveled on, but returned after a falling out with Brigham Young over who was the appropriate prophet to follow Joseph Smith. .Wilding and many others felt it should have been Smith’s son. Brigham Young thought it should have been Brigham Young. So David Wilding and many others who either came back or stayed in this area started wards of the Reorganized Latter Day Saints Church (Now called Community of Christ Church.) Crescent, Iowa’s only church was started by David Wilding and many others in that area. Many of which are my ancestors. My ancestors were apostates.

It’s interesting that Joseph Smith Wilding, David’s son and my Great Great Grandfather, is buried just a few meters away from my grandparents, who became devoted Jehovah’s Witnesses. The apostates and the devoted, both who let religion split up their families.

In David Wilding’s case, his older children traveled to Salt Lake City as older teens or adults and became prominent, respected members of the LDS church. David came back to Winter Quarters with the younger kids, of which Joseph Smith Wilding who was the first child born in the U.S. in Nauvoo, was one. Those kids became RLDS and the family was split.

The story goes with my father’s family, of which there was 7 children, that my grandfather struggled with alcoholism and my grandmother was struggling to feed all the children. She made a decision to give the younger children up to the Christian orphanage in town and keep the two oldest girls. When she was getting them ready to go, two JW missionaries came knocking on her door. And they saved her. The church helped her with food and needed items for the kids, and helped get her husband into the church and deal with his drinking. Eventually, he became an elder and minister of the Kingdom Hall in Council Bluffs. The JWs saved them, but also helped to sever the family as well later on.

It also is probably the number one thing that turned me atheist.

I am not atheist in that I know there is no God or higher power. I am a puny human, and like an amoeba has no concept of me, I’m sure there are all kinds of things in the universe that I have no concept of. I am an atheist of the God in the Bible, however. I love science and don’t really believe in the God of the gaps, although I am sure there are fundamentally amazing and unknowable things in the universe. Although I would love to live long enough to know more and more and more till all gaps are filled, I know I won’t. Nor will human kind. And I am OK with the not knowing. I don’t need to fill gaps with stories. The gaps are interesting enough on their own.

I believe my mom and dad believed in God in a sort of nondenominational way. When they first got married, my mom tried to take classes with the JWs. We had “The New World Translations of the Holy Scriptures” in our home with little tabs and notes in it where my mom had studied it. But since my dad wasn’t putting in any effort (He had had enough church, more than we ever had, he always said), my mom stopped making t he effort. My dad never officially left the JWs, he just kind of faded out. It was kind of don’t ask/ don’t tell. On Christmas, we didn’t put lights up or talk about celebrating, although we did. Once when my grandmother dropped by, my mom and dad talked to her in the driveway for a while and didn’t invite her in because our house was decorated on the inside for Christmas. We did not receive presents from them on birthdays or anything. So, it wasn’t like they didn’t know we weren’t JW, but it sort of went unspoken.

My mom started taking my sister and I to the First Congregational Church in Council Bluffs. (Now United Church of Christ.) I remember feeling fairly neutral about it. In Sunday school, we cut and pasted a lot of pictures of Jesus on pages of a book. The boy who sat across from me was always drawing the cars from Starsky and Hutch or Dukes of Hazard and never did anything. Nothing happened to him so I kind of half-assed it, too. I remember doing something where we made a golden ruler, a literal ruler covered in shiny gold stickers. It wasn’t until years later that I came to understand what the Golden Rule was. Most of church went right over my head. Mostly, I was mad because I was too young to do the stuff my sister got to do, like be in the choir or be in the Christmas nativity or in the big kids room. By the time I was old enough, we had stopped going.

My mom stopped because the minister had pissed her off by making her feel bad about our imperfect attendance. I think she felt some of the people there were snobby, too. My dad never went to church, and I did have a Sunday school teacher that constantly asked where my dad was. I did stay long enough to be a third grader that got my own Bible, though.

Meanwhile, in the JW world…the world was going to end. In October of 1975, to be exact, the Watchtower had predicted that the world would end. My parents talked about this, in mostly incredulous terms, about how one of my aunts was selling her house and getting ready for the end times. I never understood this. What does having a house matter, or cash, or a bank account in the end times? Still, the notion of the world possibly ending freaked me out at five years old. Even though my mom told me it wasn’t going to happen, even the notion of the possibility frightened me. I did not know much about keeping track of the months, then. But when 1976 rolled in and everyone started talking about the Bicentennial, I breathed a sigh of relief.

My grandmother had stepped up her efforts to save us, though. And she convinced my mother to let her pick us up from our babysitter’s house and spend the afternoon at her house. She gave my sister and I our own JW “Book of Bible Stories” and would read from this children’s bible. She told us we should read it at home, too. And so I did.

That book freaked me the fuck out. Holy shit. A mean snake lies to Eve so she gets punished forever by God. Then God likes her good son, who killed this cute little lamb for him, but not her bad son who gave up some wheat? Lot’s Wife Looks Back and turns into a pillar of salt as she simply looks in sadness on her burning home? God plays with Job like a cat plays with a mouse before deciding to let it go? Stephen is Stoned? Abraham has to kill his son? I can vividly remember the pictures, done in that same colorful style that you still see in Watchtower and Awake! Pamphlets that the JWs leave on your doorstep. I remember pictures of the people drowning in agony in Noah’s flood. I remember not quite getting why Jesus was nailed to the stake (JWs put him on a stake with his hands over his head, not a cross.) Every story was written in this tone where look what this asshole did, YOU wouldn’t do something like that so God will come after you and KILL you, right? But then Jesus, we suddenly feel sorry for. He was the one who was nice? Right? Why didn’t God save him? God, to me, seemed like kind of an asshole. Jesus was nice, but look what it did for him? God didn’t save him and he is his son. The whole concept of Jesus dying for our sins went right over my head.

On the last two pages, Jesus comes down on a white horse with an army of horses behind him. There is an ugly battle. On the next page, a beautiful but sort of stepford-y white, blond, blue-eyed boy and girl sit in a lovely garden along side a lamb, a peaceful lion, and a baby deer. It was beautiful. and it was creepy as hell. I couldn’t see any blind people in that world. My grandfather would come to tell me that if I had a proposed lens transplant that was up for discussion in an upcoming eye surgery would mark me with the devil’s mark. Then he gave me a dollar. Hmmmm. I ended up not having the lens implant for medical reasons. But now I have a kidney transplant so we’ll see how devilish I will end up. Between that and going to the Kingdom Hall to watch 16 year old family members vow to obey their new creepy JW husbands.* I was out. Religion is too weird. (*To be fair, I never really got to know said husbands. They were very young, too. This is just my preteen interpretation of weddings where women had to vow to obey their head of household.)

At church Sunday school, when some kids tried to explain to me that Jesus died for my sins, I was just confused. “What sins?” Not that I was a perfect kid. But my concept of sins was like murder or stealing, and I hadn’t done anything like that. And I also didn’t get why God making someone die 2000 years ago had anything to do with me. God was an asshole. It just seemed like more of his M.O.

In sixth grade, my friend Mardra got to sing on a local children’s religious TV show. I was very jealous. I didn’t give a rats ass that it was a religious show, I just wanted to sing on TV. She asked me if I knew any hymns. I knew Jesus Loves Me and Found a Peanut. That was it. Not good enough, said Mardra. You don’t know anything about Jesus or God. You don’t go to church. You can’t sing on the show.

Still, I was coming upon adolescence and was rethinking everything. I decided to investigate religion on my own. It was partly from Mardra telling me I didn’t know anything about religion and part from reading “Are you there, God? It’s me, Margaret.” That book was a mirror of my life. We had just moved like Margaret’s family. All my friends and I did was talk about boys, bras and who would get their period first. My parents were religiously a little screwy, and so we were nothing. And my dad even had a bad lawn chore accident like Margaret’s dad. It made sense that I would take on the same type of religious exploration that she did.

So I started reading the Bible. In my bathroom. In secret. My family would think this is very weird. I started at Genesis and maybe read 2-3 chapters a day. I couldn’t stay in the bathroom too long. I don’t think I got past psalms, like I never made it to the New Testament at that time (I eventually read the whole thing in later years.) But reading it made me think the whole thing was bananas. It told one story then told another that contradicted the first. It had all of these nutty rules that no one followed. It had sometimes some pretty language, but it still made God out to be kind of a narcissistic asshole. I started to see how, like the 80s pop song lyrics my friends and I could totally make mean anything we wanted them to mean, that is what people did with excerpts from the Bible. It wasn’t anything that I found in it that was helpful or that I could really hang on to or believe in with a good conscience.

I also started asking kids at school about their religious and church experiences. There were a lot of Catholics, some Mormons, and a mix of Protestant religions. I also started learning and paying more attention to world history in regards to religious wars. It seemed to me that religion did not make people any better, it made them meaner and less moral. Kids who I talked to would get into arguments about religious differences between Catholics and Lutherans which to me were so minute and stupid, split hair level stuff that it caused animosity for no reason. I vividly remember listening to two girls in high school get into a heated argument about whether it was okay to speak in tongues. Does God really care about this? Does he care if we dance around and sing “Hungry Like the Wolf” or dance around, arms over our heads and sing words I don’t understand? What is really the difference? Does he really care if the Millard North Mustangs win their football game? Maybe there is some kid with cancer who he might need to hear more about but you are jacking up the frequencies with prayers about Midwest United States varsity football.

Meanwhile, my family had reconnected with my dad’s sister who had left the JWs and become Catholic. They were completely excluded from all family events. In fact, I did not know I even had these cousins until I was around 12. They became the family on my dad’s side that we became closest to. But it was very hard seeing them, say, excluded from my grandmother’s funeral in very harsh ways. I became VERY anti religious.

I mellowed out about religion as an adult over the years. I dabbled in a church here or there. I took a Bible history class at the University of Kansas which I found really interesting. It did more to solidify my atheism, even though it was taught by a cool catholic nun. I learned so much about all the politics and dealings about how the Bible actually came to be the Bible. You can’t learn all that and really think it’s inspired or written by God. I give that nun credit though, for her scholarly honesty. I think that is when I finished reading the whole Bible. I thought Jesus’s teachings were somewhat aspirational and mostly a decent code to live by, along with a bunch of others. I taught a course on Islam in the UU church. I had to learn everything as I taught it and I was able to visit a mosque. Islam seemed about as useful as Christianity to me. Same patriarchy, different day. I remember thinking that Islam had a problem with scale and that no one did the math when they decided on the Hajj. (Or predicted population growth.) and now the Hajj is becoming a huge problem and very dangerous. It’s the same as my thoughts on Mormonism and polygamy. That math just does not work unless you kill off 80% of the men.

But religious people seemed to me to be just like everyone else. Some used their religion for good. To comfort themselves and others. To give themselves strength and community. To reach out and have inspiration to be their best selves. This doesn’t bother me. I am fine with religious people who use their religion for good.

Others, just like in the outside world, use their religion as justification to hate, oppress, and vilify others. They use it in violence and in selfish power. This completely grosses me out. and I think as a world civilization, we need to really look at boundaries on this type of religion and religious zealousness. I don’t think religions should get tax exempt status. I do think there should be a strict separation between church and state. I think religions should not be protected from laws like basic civil rights laws. But I also believe that people are free to believe and worship as they want, as long as it doesn’t curtail other’s rights.

On a personal level, I don’t mind religious people of the first variety. During my kidney transplant, many people said they would pray for me and I appreciate that. I understand where it comes from. But I do appreciate being asked first. Like most blind and disabled people, I’ve had strangers on the street pray for me to get my vision back and that gets irritating. It would be like someone coming up to you and praying for you to be less fat or less ugly. I’m fine the way I am, thanks. When people ask me to pray for them, I actually do. It might not be the type of prayer they were thinking of, but I do commit myself to thinking of them, saying a few words on their behalf, committing my intention to them and that all good things will come to them. Putting some positivity there in the universe.

When I worked for 2.5 years as a child life volunteer in pediatric oncology, I was surrounded by praying and prayer requests. And I did whatever made those families feel better because that was my job. And many of the patients sadly died. I started informally kind of taking data. Which kids died compared to which kids were surrounded by the most prayers and telephone trees of prayer and clergy visits , etc. You can probably guess that the results were random. The kids who died had the harder to treat kinds of cancer, mostly. Or had gotten very weak on chemo and had that kind of complication. I would never tell a family whose child has cancer how to pray or not about their child’s illness. I have no issues with praying for kids with cancer if asked. But personally, I found actual solace in the fact that it was random. The randomness gave me comfort. It seems so much better to me to think that we (the doctors, nurses, family, friends, everyone) tried our very best with what we know as puny humans to save this child and randomly, sometimes it doesn’t work out. It’s terribly sad. But not as sad as hundreds of people praying for a child to live and God decides to not intervene. God’s ways are not that mysterious. It’s just a gap in our science knowledge. We can work our hardest to narrow the gap. Bad things happen to good people. Sometimes there is just no good reason for it. That is less unsettling than an all knowing God being begged by grieving people to help and he doesn’t.

A friend of mine recently lost her husband very suddenly. It’s really sad and I feel very bad for her. But she is doing this thing where she is trying to figure out why God is punishing her by taking him away. I know it is just part of her grief processes and she just needs to go through it. But I just want to say, “Oh, honey. Nothing. You did nothing wrong. This isn’t about God taking him away. It just really, really sucks. You don’t deserve this. No one does.” I hate that religion does this to people. Her husband’s death was a sudden cardiac event and it’s just sucky and random. That, to me, is better than “ I tried to be a good person. I prayed and prayed to god and he took my husband anyway.”

I think this quote is credited to Christopher Reeve, but I’m unsure if that is correct. He apparently said, “If I do good, I feel good. If I do bad. I feel bad. That is my religion.” That pretty much sums me up. I can see cultural and literal value in studying scripture and religion. But it is certainly not worth the break up of a family or fighting a war over.

I have faced mortality and lost a lot of young people in my life. People ask me if I’m afraid of death. Maybe a little, I mean. Not even death, I’m afraid of leaving stuff undone for my kids or my husband and them grieving and things like that. But I’m ok not knowing what happens after you die. Probably nothing. You make some fertile soil and feed the earth and the cycle continues. But if there is something else, I guess I’ll find out. But I don’t need eternity. And I’m not going to live my life for it. I’m fine with trying my best to be in the now. That’s all we have.

Why I Homeschool Part 3: We Did It! I’m done! …or am I?

A grab of one of my kids last state required homeschool assessments where it shows said child performed above average in all areas of math and reading. On the one hand, I know these tests don’t mean a lot. They are normed on public school kids and all the socioeconomic bias inherent in them blah, blah, blah. On the other hand…NEENER NEENER all you doubters. With a special shout out to school administrators who wouldn’t hire me to teach even in special ed classrooms with just a few students at a time. I have always been proud to be a teacher. I have always been a teacher.

My homeschooling “era” of my life came to a conclusion with a whimper…or maybe a bang, depending on how yo look at it.

It wasn’t until today that I really thought about it being over. My 14 year-old that went to public high school this year (first time in public school) texted me and reported that he “totally got a 100% on his first Algebra test, of course.” It seems there is no reason to worry that whatever I and others and he, himself has taught him the past 14 years would put him behind. He reports that a lot of what he is doing now is “So sixth grade.” Hopefully, he is exaggerating a bit and he will be challenged and learn a lot.

He basically taught himself his eighth grade year after my life was interrupted by guide dog school, transplant, and Omaha. When he was with us in Omaha and I was at my sickest, I know that not a lot got done. But after that, he had to work through the summer to finish what I set out for him to do in 8th. We met mostly weekly over FaceTime to go over everything. I was there mostly for accountability and check in. He taught himself. I knew he found that kind of unmotivating and he was excited to go to school and have teachers, which I understand. So I’m hoping he gets what he wants out of high school. Every year my kids got to choose how to do school upon the options that were realistic for all of us. (Naim would have loved going to a posh private school like Catlin Gable, but it was not in the budget.) This year, Avery went for public.

Homeschooling families are under a lot of scrutiny and people about flip their shit when it’s a blind/disabled parenting family. There is a tendency to want to brag on your kids when they do well and go SEE? SEE? But it’s never all just you, the mom, who is responsible for the outcome. It is a complex thing that mostly has to do with the student themselves. The work they put in, the genetics they chanced to have. The environment they grew up in, which a parent only partly controls. There are always other teachers, too. From formal ones, like the many my kids had at Village Home Education Resource Center, to casual interactions with family and friends, to even YouTube.

I also can’t say too much because now I have 2 adults and one getting close to adulthood. Their privacy is always a consideration. We, of course, had some challenges along the way. But I feel like it isn’t fair to get too much into those stories. I had a kid with pretty significant dyslexia, I had another with not anywhere near the hardest presentation of autism to deal with, and there were challenges there. But I feel like I really shouldn’t go into these stories in great detail publicly. Trust me when I say that there were long, frustrating hours of learning letter names and sounding out words and finding ways not to flip math problems around. Trust me when I say that I have spent many hours crouched on the floor under a table with a kid who could not deal with the sound of the room, or the anxiety of the social expectations, or the weight of the personal essay writing assignment. Tears were shed.

So, my homeschool mom job fizzled out without much fanfare, but it also went off with a bang I just realized. They are doing so well and they are such good kids!

Naim is an RA this year, as well as a food services shift manager and has managed, which several scholarships and part-time jobs to pay his own way through college with no student debt. He even has had enough money to invest in some CDs. This should be his last year unless he goes on to grad school. He will be 20 when he graduates. He is usually always on the deans list.

Aaron is starting college next week! I am so excited for her. She finished her AA degree at community college in June. She did not get the same amount of scholarships as Naim, but did get some. She has been working at parks maintenance in our city and has a job lined up in food services at the university. We will end up contributing probably around half the costs of her college, but she will still graduate in 2 or 3 years with hopefully no debt.

Avery seems to be enjoying high school and I guess we will wait and see about his grades yet, but he has always been an easy kid to teach.

I have been proud that despite the twins challenges, we were always able to keep them progressing academically. It was not always at the same pace as public school kids, but as I’ve always said, no adult is going to ask you whether you learned to read at 6 or 12. It doesn’t matter as long as there is growth. All 3 of my kids (OK-1 bombed, 2 did mediocre) bombed their first standardized homeschool test. And then they increased theirs scores exponentially on the subsequent tests over the years as it all evened out. I honestly believe that 1:1 individualization basically erases a lot of “special needs.” Special needs reflect more about the needs of a school system then actual students. IDEA was designed to mitigate the failures of the K12 system. It is a very flawed solution to problem most people don’t even admit exists.

But when I really think about the best thing about homeschooling, it is that intangible closeness that it brings to a family. It is a lifestyle that affects the whole family. The time I got to spend with my kids from birth to age 14-15 is something I would not trade and was so lucky to have. It established a foundation that I still feel to this day. It was always a balance between trying to hit the right note between having too much parental hovering and togetherness and too much child freedom. People think homeschoolers are helicopter parented, but the 1 element I got questioned on the most is how much freedom they had to choose for themselves, get themselves places, make friends themselves, and have their own ideas. I’m not saying we always did it perfectly, but I think they became kind, independent, savvy, social young people. I like being friends with them.

The second best thing about homeschooling was keeping the love of learning alive in the kids and the fun I had relearning or getting a chance to learn anew stuff that I missed out on. I found that I am a really pretty good math teacher. And I STRUGGLED with math growing up because of all my vision and hearing issues. Shout out to Steve Demme from Math U See who was our math guide for all three kids. His curriculum was entirely with the use of manipulative and he taught the manipulative in videos. A lot of his teachers guides and answer sheets were available in digital format so I was able to reverse engineer some of the answers i didn’t understand. The first time I watched a sample lesson of his, it was on Algebraic Binomials, I think. And I almost cried. Three dimensional tactile math. I finally understood the what and why of Algebra. Math was never math, it was always “let’s go watch Steve” and get the blocks out. My kids KNOW math. And even though sometimes I was only one step ahead of them, and sometimes one step behind, I was able to gain a ton of confidence in my own math abilities. I’m not bad at it. And I CAN teach it.

One other Curricula I thoroughly enjoyed was “Story of the World” by Susan Weis Bauer. Its history told over 4 years, beginning to end in chronological order. Of course it’s not everything. Nothing can be. But after skipping around from unit to unit in fragmented pieces for my own education, doing four solid years of history in order was absolutely enlightening. I finally saw how all the pieces fit together on a timeline and the kids were able to pick up so many patterns in regards to issues like violence and causes of war, dictators, colonizers, etc. I don’t think you see those things as much with isolated units. I also loved reading all the books we read, all of the artwork we learned about, all the science we explored. Everyday was exciting to learn something new.

And we had so much fun! When I look back to all the travels and field trips and classes and science experiments and books read and ideas planted, I get teary-eyed. And in these last few months that I have been apart from them, they generally still always pick up the phone when I call, answer the text, call and text me, and we are still close. I am forever grateful that despite my mish mash of part-time employment I always pulled together over the years, there was always time available for family and kids. It was never rushed or sparse. It built such a tapestry of experiences and a foundation of family relationships.

I’m sure that growing up as they have, they have had a few awkward moments with their peers, but generally the friends they have are nice kids who I trust and enjoy. They always had to learn to walk into a classroom and make friends. They had probably a lot more opportunities to socialize than I ever did as a kid.

I did not advance in my career as I possibly could have if I had not homeschooled them. But as I mentioned in other stories on this blog, much of my situation was issues with childcare and transportation and K12 accessibility, which made homeschooling the way that I was able to parent in a way that fulfilled my kids needs as a disabled parent in the current world. When I chose to have kids, I chose that route to put my kids first, whether I homeschooled or not.

I totally understand some of the criticisms of homeschooling. I get that it is not economically viable for some families. I get that it is not what some parents want to spend their time on. I also get the criticisms that come from some families who do not teach real science and indoctrinate their kids into religion, or even use homeschooling to hide abuse. All of those are very serious. On a personal level, I never had to worry about whether I was going to teach my kids flat earth creationism or traditional gender roles or cult like religious lessons or lock them in the attic and abuse them of course. But I care about other children enough to know that outside accountability needs to happen. I have always been ok with having additional sensible checks and balances for homeschool kids. Sensible to me is stuff like semester/quarterly visits, a plan or goals for the year, a portfolio or other type of assessment on a regular basis, a basic guideline for what needs to be taught (reading, math, science concepts on a criterion referenced basis. Not a prescriptive curriculum or what needs to be done every day or logging every single hour spend on school. In homeschool families, it’s ALL school except sleep.)

But I also think so much of the good from homeschool could be brought to public school. I think if class sizes were 1:5 (perhaps a room of 10 kids with 2 adults) and were multiage, many of our ills would be reduced or eliminated. Most “soft” disabilities would be easily mitigated, kids would ALL have a true individualized education. So much more could be done with a teacher who stayed with an age range (1-3 grade, say) for the whole three years. Families who struggle, too could get more individualized help. Instead of traditional classrooms, school buildings could be more like community centers that have facilities like gyms and science labs, but would be more places to gather as a home base while students used the world as their classroom.

People say there is not enough money for that. I don’t think they understand the bulge that the issues of our current school systems face and have to pay for. There are layers upon layers of staff that do not work in classrooms directly with students. There are layers of specialists who spend some time with students but most of their time in meetings and on paperwork. Two of my kids would have/did qualify for IEP services. Both would have been at risk for failing classes, not learning to read, being tracked low, underachieving, maybe even being bullied. Nothing extra was needed for my kids except some patience, a little research, and meeting them individually where they were and stretching that a bit each day. There are cooks and janitors who could be reduced if students took over their own cooking and cleaning like in the home. (Or in Japanese and Finish schools). School would be more like an extension of family life and self directed learning. The teachers become facilitators of opportunities to learn. Not lecturers and classroom managers.

Even if this did cost more, so what? This is the kind of stuff that “Defund Police” is about. People misunderstand that term. It is not about just emptying the funds of law enforcement, it is about putting funds toward issues before they turn into criminalist problems. Does tax money need to go toward a small town buying armored vehicles and tanks for police? Or could it be used to pay for the salary of additional teachers and teachers aids and community resources for families?

Education is not rocket science. Sure there are some tips you will learn in college, but nothing I learned in college was that big of deal that made me a better teacher. And we have the internet now, so all that info is available to anyone who wants it. You learn systems in college, classroom management systems, curriculum record keeping systems, IEP reporting systems, a bit of statistics and assessment. You don’t really learn anything magical about sitting down with a kid and guiding him to learn.

I taught the little kids who were at my babysitter’s house when I was 7 or 8. I taught other people’s kids long before I had a degree. I was really always successful. This was because I only had a few students at a time, I had the opportunity to get to know them and try different things until something worked, and I could individualize everything and meet them right where they are. I would not have always been successful in a classroom of 35 people. I just wouldn’t have had the time or energy. I’m not special now and I wasn’t then. I do understand that some people can’t logistically homeschool. I understand that some people just don’t want to spend their time that way. That’s fine. But everyone who cares about kids and can be a bit patient can support someone to learn. Even if it’s just helping with something after school or spending time with kids, anyone can help a kid learn.

So, is this the end of my homeschool era? We will see…I’m in a decision making period right now after my transplant and as I get ready to return home later this year. Maybe I will work with the adults in our business more than I have in the past. We are looking at starting an entrepreneur group, like an incubator for disabled-owned small businesses. Maybe I homeschool other people’s kids who can’t. Like have a few in my home. Maybe I write and educate people that way. Maybe I do whatever CEUs I need to recertify myself as a K12 teacher. Maybe I become an O&M instructor and we expand into that area. I know I can’t really put homeschooling on my resume, it wouldn’t impress anyone. But I also know that it was not the lag in my career that people assume. I continued on and did a lot of what I always set out to do: Supporting people to be the best of who they are.

What’s the Matter with Guide Dogs? (Chapter 6: Will There Be More Guide Dogs in the Future?)

What’s the Matter With Guide Dogs? (Chapter 1: What happened at the airport?)

What’s the Matter with Guide Dogs? (Chapter 2: Mara and Jats, The Gold Standard)

What’s the Matter with Guide Dogs? (Chapter 3: The Strange Story of Barley)

What’s the Matter with Guide Dogs? (Chapter 4 Old School and New School Diverge: Sully and Marra)

What’s the Matter with Guide Dogs? (Chapter 5: Salvaging Mia)

This is a picture of Mia and I that the kids put a “sketch” filter over so it sort of looks like a pencil sketch? We look a bit cartoonish.

Due to a serious lack of transparency and study, statistics about guide dogs are hard to find. According to Guiding Eyes for the Blind’s own website, about 2% of all eligible blind people use guide dogs. This number has always been low. There are complex reasons for this.

Each individual has to decide for themselves whether the net positives of a guide dog outweigh the net negatives. This depends on their own personal situation. Do they like dogs? Is their vision or their cane travel skills giving them enough problems to want to seek out alternative solutions? Does their lifestyle accommodate a dog? Do they have the time off from employment to pursue the training? Can they afford the expense of a dog?

Despite all the glossy stories showing teary eyed blind people who credit their dog with giving them independence and dignity (terms which grate the nerves), many blind people flat out don’t want to pursue it. And that number appears to be increasing. Also for complex reasons.

I tried to find data on whether guide dog use was increasing or decreasing or staying steady over time, but could not find good data. Some of the data seems to say use is decreasing, but with the pandemic, those numbers may have been skewed and it’s possible they may recover. There is also the stats of blindness prevalence itself. Type 1 diabetes, which used to be the leading cause of child and young adult blindness, has become much more sophisticatedly managed with the invention of insulin pumps and continuous glucose monitors. When I was young, almost all the young people I knew were blind due to Type 1 diabetes. Now, this is rare. Things like macular degeneration are increasing in older populations (apparently due to our LED lightbulbs and screens), but older people are less likely to pursue a guide dog (or a cane for that matter.) So, it is hard to say what is happening on a population level.

In my own life, where I speak to countless blind folks every day, I am seeing (admittedly anecdotally) a decline in a desire for guide dogs. Some of this might be because of the improved technology for navigation that has come about. Blind folks now have access to apps that help you cross streets, that give point-by-point walking directions, that tell you what stores and addresses and intersections are around you, and even access to live visual interpreters that can explain what is going on around you by having access to your camera. A cane is a very useful tool, much more useful than a guide dog, to explore the space around you and make sense of it. But a cane is also tedious and requires a lot of concentration on your part to keep track of everything. Guide dogs take some of the tedium and mental burden away. You share some mental responsibilities with the dog. But now, you can share some of the mental responsibilities with these apps, And they can be much more reliable and give much more specific information than a dog can.

But also, much of this is likely due to what has happened with the massive increase in discrimination and oppressive regulations around service animals. This is largely due to the “faker” and largely untrained emotional support dogs and the notorious emotional support peacocks and lizards that began showing up in airports and in public places, causing messes and mayhem where they went. It has definitely been something where abusers ruined it for the bonafide users. However, I also think that the decline in the training of guide dogs has not done us any favors.

In the 90s, it was extremely rare to ever be questioned about whether my guide dog was legitimate or to be refused service in a business, taxi, or airport due to the dog. Guide dogs actually helped lessen stigma and discrimination against blind people. People knew what they were, knew what the harness meant, and knew they were hard to get and so that you must really be blind and need them if you had one. There was literally no way to get a harness or service dog signage back then unless you went through a guide dog program. Now, you can buy that stuff off Amazon. People knew they were well behaved because their behavior was exemplary. It had to be, because until 1990, we did not have a lot of universal legal protection. (Many states had some laws, but the Americans with Disabilities Act of 1990 codified national service dog rights for the first time.)

When you look back to the history of guide dogs, which started in Germany after WWI for blinded vets, guide dog trainers and users had no protections and so they had something to prove. When trainer Dorothy Eustis and her first U.S. student, Morris Frank, started The Seeing Eye in 1926, much of what they did was to advocate and educate as well as put political pressure on lawmakers to legislate guide dog access. The dogs coming out of her program had to be above reproach. The blind students who used them also had to be above reproach. I imagine there were many people who could have benefited from guide dogs that did not get selected for programs because of the very high standards for both handlers and dogs. For decades, you were required to wear a suit and tie or wear a dress as a student at the Seeing Eye.

In 1993, it seemed like we were still sort of in the leftovers of that era of having something to prove and having to have exemplary handler and dog behavior. Since then, it seems there has been an overall devolvement of expectations all around, for the dogs, for the trainers, and for blind folks themselves.

Schools Low Expectations of Blind People

In my experience, this has always been a problem. And in some ways, this has improved over time. But there has always been a lack of respect and equity by the Guide Dog Schools in regards to blind people. On an organizational level, we’ve always been treated like shit. In fact, when I ask people who like dogs and are fairly good travelers why they don’t consider using a guide dog, this is the number one reason that comes up. They don’t want to have to put up with all the patronizing of the guide dog schools.

But first, before 500 people start telling me how great their guide dog experience is and how nice the staff was, let me explain a bit more. Oppression can be complicated. It can be stealth. It can be benevolent. You may have heard of benevolent racism or sexism. There is benevolent ablism as well. In fact, I think ablism is particularly prone to it.

A lot of people will describe guide dog school as a vacation. And I totally get that. You don’t have to cook or clean. Unlike the rest of the world, everything is made accessible for you. And people are nice. They are really nice and polite. And I am in no way saying that for many/most of the staff, it is insincere or part of some grand conspiracy to trick you into being duped into their secret condescension. I think the person who serves us food really wants us to enjoy the food and have a nice day. I think the trainers largely want you to have a good experience. For many, especially those who come from really shitty home, community or work situations where they deal with constant daily, hatred and antagonism because they are blind, this experience can be a revelation of good treatment. But the higher up you go, the worse the oppression gets.

The power differential is extreme. We aren’t like regular students who are covered by laws or pay tuition. We aren’t colleagues or employees who have some union or HR protections. We are recipients of charity. The prevailing underlying thought is that we have no rights and should only be grateful for our salvation by these white knights.

Now, it is tricky to be a beneficiary of charity. Of course there is room for gratitude. The fundraising PR they use often throws blind people under the bus to gain sympathy. Tearful people will talk about how they had no dignity and couldn’t do anything until they got a guide dog that changed their whole life around and gave them a life again. I mean, there are people who legit feel that way and so be it. But there is also a lot of pressure to “put on” that show and be that person. In doing this, it makes blindness look like a fate worse than death and if you don’t’ have a guide dog, you cannot function in society and you have no dignity. They will often show someone apparently struggling with a cane by getting stuck behind a door or getting tangled in a bike rack or something. These things do happen. But it has nothing to do with our dignity or independence. That is how blind people who use canes move. Usually you are not that tangled, but when it happens, who cares? There has been a lot of hatred, discrimination and stigma surrounding just how blind people move. There is nothing wrong with how we move or how we use our canes. There is no moral or ethical value here between how a cane user moves, vs. a dog user, vs. a sighted person. But the guide dog schools use propaganda to make it sound like traveling with a cane or moving like a blind person moves is a fate worse than death. This rhetoric is damaging out in the world. There are legit advantages to having a guide dog. In fact, recently a volunteer of a guide dog program asked me what the benefits were to me as a guide dog user and I gave her paragraphs of them. She commented that this was the first time someone actually explained the true advantages of guide dogs in a practical way without just giving the tearful dignity explanation. I think funds can be raised on the truth about guide dogs. Not a lie about how you don’t have dignity unless you have a guide dog.

You are also constantly being told that a guide dog team costs anywhere from $40-80,000 and there is no way you will ever be able to pay that debt back. You are therefore at their mercy and you have no say. Yet, we are then supposed to trust completely our lives and wellbeing to these dogs with almost no control or transparency into their level of quality.

And quite frankly, we do give back. All guide dog users are on some level, ambassadors for guide dogs and their particular school. Many take it further by doing public speaking educational engagements, recruitment, and word of mouth referrals. Everyone answers a million questions from the public and everyone does a level of fundraising, some by just talking about their dog in public and others by participating in fund raising events, hosting their own events, and donating money themselves to schools. My sister and I sponsored a GDF dog together, I have participated in walks and gofundme type events and have done countless guide dog presentations in schools and community organizations. Nik and I organized a guide dog info and recruitment fair at our local agency for the blind. MOST guide dog users have done these things on different levels. For Free. Is it $40-80,000 worth of free? Who is to say? Ask Haben Girma or Erik Wehermeyer what their speaking fees are these days. Yes, they are more famous than most of us, but I still know what kind of fees my business partner and I can get for some of our simple intro AT workshops we’ve done. I know some of the fees my blind colleagues who do DEI presentations can get. Yes, I think that many of us, if we could monetize all the free PR we’ve done for the schools, contribute enough time, expertise, and ambassadorship and recruiting and fundraising to earn pretty close to these amounts over the lifespan of our dogs. If all of that went away, it would be interesting to see what would happen to the bottom line. I believe the work we do for the schools is worth something. I don’t know that most of the leaders of these organizations have considered that.

I get that fundraising is hard and takes a ton of work. I get that pleasing donors and volunteers is essential. But they aren’t your customer base, WE ARE. Also, unless you are going to change the nature of your nonprofit and your mission, you aren’t in the business of selling dogs, either. I’m not saying it is wrong to sell dogs to the police or other schools, but that isn’t your main product, right? WE ARE. Nik totally thinks that the guide dog schools are only doing classes of like 4-5 people because they are making real money (apparently $15-45K per dog) selling to selling dogs to police and other working dog customers. I don’t know if that is why, but it does feel like a LOT of dogs are being bred without a lot of blind people matches being made. Is this becoming the focus of these orgs and guide dogs and blind people are almost the afterthoughts? I can’t say, it’s just a theory I’ve heard, but maybe it is one explanation for the deterioration of guide dog training?

Without blind people, there is no guide dog school. There is no guide dog trainer jobs, there is no raising of funds, there is no organization at all. I am not implying that blind people should not be appreciative for the free services they are getting. And I actually do feel an obligation to give back. And I will work harder for those who can’t do the work I can do. (And for those who say this series of Guide Dog posts is the opposite of good PR, maybe. But it has also been a labor of love for the whole concept of guide dogs. And all the people in the field. I’m trying to help you a bit by holding up a mirror to your face. You need to do better.)

Blind guide dog users are essential, the most essential part actually—of the whole guide dog industry. We should be treated with more respect, more transparency, and higher quality services than I’m seeing lately. To give you just one simple example of what kind of stuff is happening, I’ll share this experience with you:

For decades, blind people never owned their own dogs. This actually caused problems for many people. Some reported dogs taken away from them because they were thought to be a poor match. Or for mandatory retirement. Or dogs that were euthanized without the blind handler’s knowledge, or dogs that were taken away because of reports of abuse but with no due process. Being the central decision maker with access to due process is key here. There are still local laws and animal services as well as veterinarians that have the authority to deal with abused or sick dogs. But ownership matters. Even if most people will not ever deal with any bad situations, it is still insulting that we are still not thought to be trusted competent adults that can own our own dogs that we spend the majority of their lives caring for.

The vetting process to get a guide dog is more extensive than the vetting processes I’ve been through to get into college, or be a teacher, or work as a state certified home health worker. All the schools are a bit different, but here is what most require:

-Initial application with questions about your blindness, travel skills, guide dog history, overall health, employment, housing, lifestyle, finances, criminal history, etc.

-evaluation of your travel skills from an orientation and mobility professional

-1 to 3 letters of recommendation

-An extensive physical examination from a medical professional with a full report of your medical history and current status, vaccinations, etc. I’ve even seen sexual history on these forms.

-A phone interview with a staff nurse

-A phone interview with a trainer or other staff

-An in-person visit where your home is inspected for suitability and your travel skills are evaluated in a walk around your neighborhood and street crossings, etc.

-Two to four weeks of in person training where they control our schedule 24/7. We eat and sleep and shower there, we are evaluated constantly. Notes about our behavior are written and given to the proper authority. They lurk around at times and don’t even tell you they are watching you. No, I don’t think they have cameras in your room, but they do have key access to your room. There is no privacy.

-Within the training, we are continually evaluated by trainers and nursing staff. Interviews with the nurse, the trainers, the directors of training happen often and are required. Competency with the dog is evaluated. Data, never shared with us, is taken.

-After graduation, there can be follow up visits from training staff, progress calls, and mandatory veterinary reports.

Just to be clear, I’m not even necessarily objecting to most of this (although some of it really IS excessive and a violation of privacy). What I object to is that all of us have been thoroughly vetted on multiple occasions. If we were not suitable to ethically care for and handle a guide dog in this year long vetting and student training process, well then you’ve had your chance to kick us out. If we have passed the muster to graduate, then give us ownership of our dogs upon graduation. Don’t hang a power trip over us the rest of our (dog’s) lives. Because that is all it is, a power trip. I’ve been trusted to take care of people’s disabled children with less vetting than this.

This is patronizing ablism.

I about jumped out of my chair and stabbed a guide dog staffer about this issue, (ok, not really. I’m a pacifist. Don’t take my dog away) because he was basically gaslighting and lying to everyone about this. He presented the ownership issue as if there was no real reason to own your dog, it didn’t matter, and it was better for you to let the school retain ownership. (At this particular school, ownership could be granted in two years IF you request it. I already have a note in my calendar for my exact two year anniversary with Mia so I can “request” to own my own dog. The dog I’ve spent much of the last 8 months training myself.)

When I mentioned the due process issue and some of the problems others have had not owning their dog, he poo pooed them with some assurances that they can’t just pound on your door and take your dog. Perhaps not, but I know what can happen afterwards if there is no due process. Then he went off on some stupid straw man about how nodogs should be property anyway. Well, that is not the debate we are having and that is not the world we live in and you are a gaslighting, lying condescending, ablist ass. No, there is really no other excuse for you. You are saying this right in front of a lawyer who knows better (not me, my classmate. But every single student in there knew better and knew he was full of shit.)

Look, in most cases, I don’t think these problems ever come up. I don’t think they are trying to take back people’s dogs on a whim. But it is a matter of respect. And by holding the ownership thing over our heads, they are showing a complete lack of it for no other reason than that they do not trust, respect or think of blind people as their equals. Blind people have fought hard over the years for guide dog ownership and due process and that is for good reasons. Some schools do now have ownership upon graduation, as it should be. Other schools need to take a good hard look at how much they are discriminating against and loathing the blind people they purport to serve.

Another thing I would like to say about respecting blind people. I think I am an average blind person. I do OK. I have some additional stuff like hearing loss and kidney disease, but generally I’m average. There are a wide variety of blind people out there. Some with other disabilities, different levels of functional vision, different educational opportunities, socioeconomic backgrounds, etc. A lot of times when I have complained about guide dog schools, or anything blindness service related, I get a version of this one comeback which I would like to just shut down right now.

People say stuff like:

“Not everyone has vision like you do.”

“Not everyone has your level of success.”

“Not everyone has your Orientation and Mobility Skills”

“Not everyone has your level of determination or moxie.”

“You don’t know what it is like to work with the people we work with. Some are very challenging and need a lot of support.”

Ok, first of all…I help run an AT training service that works with blind and disabled people. YES, I DO know what it is like to work with a wide variety of people who have a wide variety of skills, problems, levels of functioning, whatever. I not only work with these people, I am friends with these people. They are my community.

If some people are just too much for you, you had your chance to eliminate these people in your vetting process if you didn’t think they could handle a guide dog. (We don’t get to do that, by the way. We take everyone.) So, if you accepted them into the program, treat them with the respect they deserve. Respect is more than basic politeness. It means treating them like adults who have capacity and self determination and deserve full information and responsibility. Always presume competence. Acknowledge the imbalance of power and risk of oppression under those circumstances, and double and triple step back your power with intention and make sure that you are not manipulating them or treating them poorly.

I am all for meeting people where they are. That’s fine. But just because people have low skills or functioning or whatever does not give you any type of justification for being disrespectful to them. Yes, there are people who’ve had lousy or almost no education. Yes, t here are people who have additional disabilities, a lot of learned helplessness and don’t function well without a lot of support.

So what? None of that is justification for treating people in condescending fashion and being dishonest, patronizing and ablist. Saying that somehow I deserve more respect and self determination because I am a bit more independent or have some better advocacy skills or look less blind or can travel a bit more independently is bullshit and you should be ashamed of yourselves for putting some arbitrary goal post on equal treatment. Everyone has inherent worth and dignity. Be upfront with people. Adjust your language if need be for better comprehension, but give people the same level of information, respect and decision-making power as you would anyone else. You don’t deserve less rights because you function at a different level.

If you think you are complimenting me be giving me the “not everyone is as relatable to me as you are because you seem higher functioning and less disabled, and that is why I give you special privileges” or whatever…you are not. You just outed yourself as an asshole.

Schools Low Expectations of the Trainers and Dogs

Every guide dog user I’ve talked to that has been around for the past 30 years or so has talked about how the quality of guide dog training has gone down hill. My theory is that it is partly because of the much lower standards in general for the proliferation of service animals and ESAs. They are more protected by law and so we aren’t fighting that battle anymore so who really cares how the dogs act, I guess. But honestly, I’m really unsure of the reasons. I’m sure it is also complex.

But I will say that it doesn’t seem like the trainers really get blind people’s real lives, and they also do not spend NEAR enough time getting good O&M skills that include spending time blindfolded both with cane and dog and WITHOUT a sighted person walking along with them telling them every thing that is coming up. It also seems like they don’t spend enough time on diverse routes and do the same routes over and over with the dogs instead of traveling with them in unique places. Dogs generally like routines. Any dog can guide on a route they’ve done 100 times. A guide dog needs to work in unknown settings, without sighted assistance.

I think they all should have at least 3 months, full time 8-hour day, under blindfold to learn how a blind person lives. This includes meals, buses, cars, walking, shopping, etc. Ideally this would be done with highly skilled blind instructors, not the very low skilled and low knowledge sighted people that typically get TVI and O&M certification in like 2 summers with almost no blindfold time. After learning with a cane, then they need to spend substantial time with each dog they train doing this. I get that at the beginning of a dog’s training, a sighted guide might be necessary for safety, but really, the last couple of weeks of the dog’s training should be entirely under blindfold and without a sighted trainer walking along side and without using the same routes over and over. That just isn’t real life. As a person who had a lot of vision when I was younger and still has some vision at least during the day, I know that guide dogs area very influenced by subtle reactions to visual stimuli from the handler, body position, tensing up, being told something is up ahead, etc. They need some exposure to having someone just not know where in the hell they are and have to figure it out. The dogs used to seem like they had some of this, but now it seems like they have none.

I feel like trainers think that we go to the same 2 or 3 places every week, never divert, never run into construction, never have to change routes. We never have to change our pace due to injury, the circumstances or walking with a slower person. I also feel like they think we never carry groceries, a baby, a child’s hand, or talk to a friend as we walk so that all of our attention and both hands are fully available for the dog. It seems like they think we have the time and inclination to give the dog treats at every curb because as long as they stop at a curb for treats, they are a guide dog. They don’t seem to even get why they are stopping, or have a proper fear of cars. They don’t seem to have intelligent disobedience anymore, and I think the only way to get that is for the trainers to actually go out with them under blindfold and without sighted assistance. Yes, maybe you might trip or bump into something. Guess what? If we get dogs that aren’t trained well, that’s exactly what happens to us. And no, we do not have a constant supply of sighted people to walk beside us and tell us everything that is coming up, what every intersection looks like, and when we are going to smash into a wall.

The blase attitude some trainers have is an insult when you consider that we have to use these dogs (in conjunction with our own skills) as safety tools. When my dog does something absolutely dangerous, don’t downplay it or blow it off. Yes, you were here now to prevent bodily harm, but have one iota of appreciation that I have to go home with this dog and travel with it solo.

Also, have a little respect and recognition for the overwhelming amount of discrimination that a blind person faces on a daily basis. The days in which a guide dog deflected some of that discrimination are largely over. Now, using a guide dog adds to the discrimination we face. There are always a few dog lovers out there who will love us and our dogs even if they pooped on their face. But they are actually the minority. Another minority hates dogs, but most are generally OK with dogs if they are not a nuisance. So, except for the serious dog lovers, the vast majority of people we deal with WILL and DO hold it against us if our dogs act up, shed, sit on a car seat, constantly get up from the bus floor or restuarant floor, bark, pee, guide us sloppily, etc.

DECORUM MATTERS. Quit minimizing it when our dogs do stupid shit right in front of you like it’s no big deal. Dogs can behave if taught well. Many of the dogs coming out now are not taught well. I always feel sorry for the young first timers I see all over Portland with their GDB dogs. Because the dogs act absolutely atrociously and the young people don’t know better or how a dog can act or how to make their dog act that way. Those GDB dogs are the ones that keep people from getting jobs and from getting taken seriously in doctors offices or banks or college classrooms.

People will look for any excuse, ANY reason to discriminate against a blind person. These poorly behaving dogs give them about 70 excuses to not offer the same opportunities to blind people as they do the nondisabled. Thirty years ago, the dogs used to sometimes help. They would walk into a job interview smoothly and with grace, point you to a chair, then sit quietly under a chair the entire time, unnoticed. It could be a conversation starter. It isn’t like that anymore. Now the dogs are fumbling around, getting in the way, making the blind person look incompetent or awkward. All the controversy around service dogs and ESAs make people not even want to go there. Uber drivers won’t take you, etc. Without finesse and decorum, a guide dog is a hindrance that will cause more discrimination, not less.

Trainers act like everyone is going to love our dogs and welcome us with open arms. That only happens in the insulated world of guide dog schools where trainers, donors and volunteers are all dog lovers. That is not how the real world works. How these dogs graduate with no proper indoor manners is beyond me. There is always the burden of having to have the dog with you and take up space and be cared for. That can be offset if the well behaved dog gets you down the hallway and into the chair elegantly. If the dog is all over the map…well, imagine how you would like to go to job interviews with your toddler climbing the walls? Now imagine taking your toddler when you know you are already climbing uphill because you are blind. I don’t understand why decorum and finesse is hardly taught anymore, but it is arrogant and kind of privileged that the schools don’t even consider what blind people face as far as discrimination and how guide dogs factor into that.

Also, guide dog users, especially alumni, know that the process of training is stressful for the dog and that they are going to do nutty stuff while getting used to a new person. However, sometimes we can see real problems that go beyond that. When a dog has clearly not been taught certain skills or is acting in ways that are way beyond what a guide dog should do, even if stressed out, don’t always act like it’s our fault. We can work with you to try and solve these problems, combining your level of expertise with our experience as actual guide dog users. But if you just deflect all responsibility and act like it’s all our fault and we are just doing it wrong, then no one gets anywhere and any real learning gets shut down. If we ARE doing it wrong, then tell us the right way to do it, don’t just say it’s all you and you are wrong. If you don’t have a constructive correction for us to do it right, its a real tell that the dog really doesn’t know how to do it and you don’t have a way to teach them anyway. Assuming competence is always better than the inverse.

I don’t pretend to be an expert on training or breeding dogs. I know I don’t know all the factors that go into what makes a good guide dog. I just know a good guide dog when I see one and they are getting rarer and rarer. But dogs can be held to higher standards than they are now. They can be motivated by praise and the bond with the handler. They can basically understand the overall job of getting themselves and their handler safely through the world. They can target things and they can sit nicely when not fully engaged in working. And they can travel off-route with a handler who “freestyles” more often than not.

If not all dogs can do this, then actually match dogs to people’s lifestyle, not just pace. Pace changes so much that it’s is more important to train a dog to match pace than to arbitrarily match a dog to a pace you took one time in very controlled circumstances. Keep the dogs that are the best for the people who do the most traveling. Put the route dependent dogs with the route dependent handlers. Put the lower performing dogs with the folks who get sighted guided 95% of the time. And be transparent about this so people know what they are getting and why. But in all cases, there should be a basic high standard for decorum and basic guiding.

Here is another idea. Marra, my second dog from GDF, was trained to my specifications. I had an extensive interview with her trainer, the only trainer she had and who also trained us together. My interview was about three months before I was assigned her so she had only recently started training, and then she was trained with me in mind and to what I had requested. I know that probably can’t be done perfectly every time, but a lot more of that could be done. If you have too many dogs going to too many trainers, any quality assurance gets lost, and any personalized matching gets lost, too.

Also be transparent about how many dogs are rejected, how many get returned and why, how many successful pairings, how long each dog is in training and what happened in their lives up to the point of class, why the choice was made to pair, and just overall share information as if we are equal and respected partners in this endeavor. If we are supposed to choose a school to train a dog that either can assist in our safety or put us in danger, or assist in our acceptance or increase our oppression, we have the right to know these things to make good choices. In general, there needs to be accountability in guide dog training, ,and blind handlers need to be front and center in that process of accountability, not a powerless afterthought.

Is there another guide dog in my future?

Nik and I have both said we don’t know if there will be another guide dog for us. But we have both put off the decision until the time comes. I’ve loved all my dogs, and the guide dog relationship is special. But you have to weigh the pros and cons. It is not near as balanced to the pros side as it was 30 years ago. Every time we go anywhere, we think dogs or not? Before, we wouldn’t have ever thought of not taking them. Now we try to weigh the risk factors. Are we going to use an Uber? Because that can fuck up your whole day. If I absolutely have to get somewhere by a certain time and I have to take an Uber, the dog can’t come. It’s just not worth the risk. Traveling by airplane is frought with issues now, too. We brought the dogs to Nebraska because we were going to be here a long time. But in doing so, I nearly lost the kidney I was offered. Twice, we had to fight tooth and nail with tears and everything to be allowed on the plane. It was an awful mess and a risk I was trying to avoid. But now, for short trips, we’ve been finding them a dog sitter rather than take them on the plane. Flying with guide dogs is a nightmare now. Are we going someplace they have been before and have proven to do a good job at? If not, we might consider figuring it out ourselves with a cane. Is their possible poor behavior going to be a problem where we are going? If so, we might leave them at home. Is the conditions too hot or too cold or otherwise going to be difficult for them? In the past, we might have asked for a favor from someone there to help us out. We often no longer can count on that grace because everyone is sick of “so-called service dogs.” It’s just a different world now, and with different dogs. We love them, but their utility to us as guide dogs is not what it used to be.

It’s a difficult thing to apply to get a dog, which takes about a year, do the two week benevelent, but still minimum security prison duty, do what used to be 1-3 months but now seems to be 1 year of additional training at home, then you maybe get 5 years if you are lucky, then they start to decline, get old and die. Repeat. There are some AI, robot guide dog solutions that are being developed. It will take a lot for me to trust that technology, but if and when it works, I would so jump on that so fast.

Mia and I working on obstacles. There were a bunch of these one day so we worked on them a lot. She had done this one before from the other direction, and about 6-8 other ones by the time we took this video. So at this point, she was handling them really well.

Or if working with Mia has proved anything to me, it’s that I can train my own dog. I’m not saying that I trained Mia from scratch, because she did come to me with some skills, but I have had to train her from scratch in some areas enough that I am starting to get how I can do it. And that I totally could do it. Some of t he guide dog teams I know that are self trained are the best, most well trained teams I’ve ever seen. There is something to be said for training from puppyhood and that bond. Another area of discrimination is that guide dog schools often don’t let blind people be volunteer puppy raisers. I would love to train a puppy from scratch into a guide dog. What a unique experience! I’d need to do more research, but that is maybe a possibility.

Or, I’ve always enjoyed cane travel. I believe I can still—as I was taught—be dropped into a city and find my way out. I’m not saying I could do it perfectly every time or that I won’t get lost. But I have the confidence to do it still and when you are feeling good and you have the time, it is actually quite fun. A lot of people say that a guide dog gives them confidence. And I totally get the whole thing where sharing responsibility makes things easier and it is another bit of data to use when traveling. I get the high of walking smoothly down a street with a dog and making a perfect turn rather than running into shit with a cane. But I kind of think some of those folks are just so invested in vision being better than blindness no matter what, even a dog’s vision, that its sort of a placebo effect. I was just lucky to always be taught that sight is very efficient but that cane travel was an alternative, not sub par. So I always had that confidence that I could do what I wanted with a cane, too.

But I think I would mostly like for there to continue to be guide dogs in the future. It is a unique special thing and I’ve always thought it gives the dog a really nice, unique and high quality life as well as giving the handler some kind of almost intangeable level of information that I didn’t know can be replicated by an AI self driving gadget. I am afraid that if the guide dog world doesn’t shape up to face the challenges of the new reality of guide dog discrimination that is out there now, as well as the evolution of blind people understanding their own rights and how they deserve to be treated, it will eventually fade out and no longer be a viable option.

This is the rocky sidewalk Mia took me around without being asked. That was a first and a really good step for us.

Mia and I are full-fledged bonding. It didn’t really start in force until we were alone here together. But I hardly ever use treats with her anymore and she is happy for me to praise her. Yesterday I walked on a driveway that I hadn’t walked on in months. The last time I walked on it, I sort of tripped because the concrete was very broken up. Yesterday, without me even saying anything or remembering that the driveway was crumbling, Mia walked me into the driveway and around it so I avoided the whole thing. When I realized what she was doing, I praised her lavishly and she looked at me and had a little skip in her step. It was fun, but also a sign that she is starting to understand the job, and care enough about me (or at least my praise) to think ahead and strategize this on her own. I was so happy! It is these moments that I will miss if I leave the guide dog world. My hope is that guide dog training can improve its transparency and quality, allow for real accountability from real users, and that we can all mutually respect each other enough to work toward a shared goal of good guide dog teams.

It’s Not You, It’s Me…and, Well, Everyone and Everything (A Brief History of My Ongoing Social Dysfunction)

The image is a popular meme featuring a man with a thoughtful expression, pointing to his temple with one finger. The text on the image reads: “You can’t have social anxiety if you refuse to be social.”

I sit here in this weird sabbatical in my Omaha enclave, everyday basking in the wonderfulness of being alone with hardly any responsibilities as I improve my health. The only thing nagging at me is that lots of people I like are reaching out to me, and I’m not so good at reaching back. Which gives me guilt. But in my aloneness, I’ve had time to think and overthink and analyze why the hell I am such a social procrastinator and dreader when I really don’t have reason to be. And I guess someone could name it some pathology like agoraphobia or social anxiety disorder. And that might be accurate. But again, I think—like I do about many such pathologies—this implies there is something inherently WRONG with me. Not saying there isn’t. But to me it feels more like a natural response to what’s wrong out there.

So here is a brief history of how I got here by decade. (Like as if you’d believe I can be brief. Bwahahaha!)

The 1970s

I was a fairly quiet but normal kid. I had school friends, neighborhood friends. Occasionally saw cousins, etc. I was never super extroverted. I never got in trouble at school for talking or being loud or anything. I was just a kid.

One thing that I remember that was significant about the 70s was that in 4th grade, I got these crazy glasses. I had worn glasses since I was 18 months old, but these glasses were very weird and unusual looking. When I got them, I was late for school because I had been to the ophthalmologist that morning. I walked in the room wondering what everyone would say. My teacher, Ms. Hopper, looked at me as I sat down at my desk. She immediately addressed the whole class. ”Lisa got some new glasses that help her see better, which is the most important thing. Everyone needs to be supportive and friendly and tell her how nice they look.”

I kind of wanted to sink under the desk, but for the rest of the day, kids came up to me and said,, “I like your glasses.” And they never teased me about them or anything. I was self aware enough to know they looked weird. But I think people knowing me from before, being used to me and Mrs. Hopper setting the tone immediately stopped any teasing in its tracks.

The 1980s

Which all went to hell when in 6th grade I moved to Omaha and went to a different school. I was teased relentlessly about my glasses, first at my elementary school and then in 7th grade when it started all over again in middle school.

Thus began my practice of becoming invisible. The more invisible I was, the better my fate. Although I had skipped school a few times in 5th grade, this also started my skipping habit and realizing that literallly no one cared if I was at school or not. No one noticed. Not teachers or kids or anyone. Unlike my contemporary, Ferris Bueller, this Ferris did not worry about having to barf up a lung to miss another day. This was a victory for me. Also around this time was the start of my segregation with the other special ed kids for some parts of the day. I was pulled from PE class and put in the resource room. There was a stigma of going on that walk down the hall, but once you were inside the room, it was a relief. I had fun with those kids, although often we had nothing really in common except for having an IEP. We hung out together at lunch and at other times not so much because we liked each other so much (although it wasn’t like we didn’t like each other, but it was more a friendship of survival than really coming together on common interests). We were using each other for strength in numbers, and we all knew it implicitly.

High school was better but largely because I continued to be as invisible as possible. I had the long stigma walk to a different resource room at the end of the hall, where I remember things like this guy in there saying he wanted to marry me but only if I got a job and supported him because he wasn’t going to work for a living. I said, nuh uh, so he upped the offer by promising to cook and clean for me. It was stuff like this. I had no interest in him and he had no interest in me, but we knew we were at the same status in the school hierarchy and we had to accept each other no matter what, because it was not coming so much from outside that room.

There were things that were just perceived by me to be out of the question of participating in. I would not go to something like homecoming or prom or whatever because the stress of that, and the possible visibility of it was just something I didn’t have the energy to deal with. And to be honest, I wasn’t that interested.

In my junior and senior year, I joined more stuff like journalism and “rifle squad” where we twirled rifles with the band. Rifle squad was ridiculous for me to join. I had gotten out of PE because of the risk of retinal detachment if I was hit in the head, but then I joined a group where I was throwing essentially a large, blunt instrument 2 inches from my face. I had basic competence with the rifle, but I caught the rifle in a way that was wrong and I could never correct it. Instead of just having it land in my hands, I reached up and “cheated” the last half turn. I bring rifle squad up because it was an example of how I seemed to purposefully pick the most impractical, underdog group or activity out there.

In rifle squad, we wore cute short skirts, but we were not on the same level as the cheerleaders or the drill team. People made fun of rifle squad, so it had to be right up my alley. We would perform at pep rallies and if anyone would drop their rifle, it made this huge BAM! BANG! BAM! on the gym floor and everyone would hate cheer. Then, if it was you, for the rest of the day you would be mercilessly teased about it. I got demerits from our captain once because I dropped my rifle and laughed. She thought I did it on purpose. I did not, but I could not help laughing at the whole half cheer/half boo response to it all. I had long ago developed a hard shell about being made fun of, and I didn’t care. It was just such a funny reaction. Being in rifle squad was like being in the resource room. There was safety in the group, and even many of the very popular drill team girls, who we shared 6am practices with, were usually nice to us, and sometimes that alliance helped outside practices in the HS hierarchy. But we were not popular outside of that. This was becoming comfortable to me as a place to live. Barely visible Freaks and Geeks or what have you.

Journalism was better and became a safe place, in regards to the physical rooms that journalism was in, I was accepted there and could hang out there safely. But I did not really hang out outside of school with them. I think I was too invisible. They were nice to me but just didn’t think about me that much. Looking back, I probably could have tried harder but never bothered. To me at the time, I had to be very careful to stay in the narrow zone I was given to walk the halls in peace and so that meant staying pretty low-key. But I liked journalism and it certainly made my last two years of high school more tolerable.

The 1990s

The 90s were when I was the most social of all. Granted, it was largely (though not entirely) with blind and disabled folks—which meant it was disregarded by some others in my family, etc. (Why can’t you find a siiiiiiiiighted guuuuuuy to date so he can taaaaake caaaaaare of yooooooooo??? I heard a thousand times.)

I spent my freshman year at Baker University, a private Methodist liberal arts college in Baldwin City, KS. There were only about 1000 students, so less than half the size of my high school. Besides the other blind student who was a year ahead of me so everyone called me her name all the time, I mostly hung out with the girls on my wing in my dorm here, went to a lot of frat and some sorority parties, went to games, activities and what not, and was more or less accepted by people there. I probably have other blind girl to thank for this, actually. She had paved the way. But also, I had grown into my blindness by this point and had started using a cane and thus sort of “outed” myself as blind and proud for the first time. So, unlike high school, I didn’t think there was any great thing wrong with me anymore. I learned how to effectively take the blows, looks, treatment, etc. that happens when you are a non passing blind person with a cane. My thick skin came in handy and I just let all that stuff roll off my back.

Baker was not a good fit for me financially or academically, so I transferred to the only school I could afford, the University of Nebraska in Lincoln. This is where my blind friends were and my boyfriend was, and so although I had a lot of friendly acquaintances with roommates and classmates at UNL, I largely hung out in the blind community. When I started establishing my childcare business with disabled kids, I would reach out to organizations like the ARC and met more adults and kids with disabilities. Back then, the nascent disability services office was just starting and so that was another place I was required to hang out to do tests or use the computer. Since we were kind of winging it because there wasn’t well established services, the disabled students who met in that office traded services. So, I might carry books and walk with a person with cerebral palsy and they might read for me. I got rides from a quadriplegic woman and in exchange I cleaned her apartment for her. Stuff like that. We were very much in it together.

One thing people don’t realize is how much disabled people are segregated into sort of being forced to hang out together. From the resource rooms at school to separate housing in dorms to taking tests separately in class to being seated in the gimp section at concerts and events. You are always put with other disabled people so that is who you meet, befriend and get comfortable with. In these years, I started to see how my social life was diverging from the mainstream. I got along with nondisabled people ok, but it’s a different culture and you find yourself sort of code switching. Which you literally have to learn to do to make good in the world. You have to try to keep one foot in the nondisabled world and not completely surrender yourself to the crip world. But it does get exhausting. You have to know how to keep nondisabled people comfortable all the time and understand how they feel, educate them about disability stuff in a nice way, be self deprecating, laugh at their dumb jokes you’ve heard 80 million times and patiently answer their questions. It’s not like you don’t like nondisabled people, and the vast majority mean no harm and are just trying to connect the best way they know how. But it’s like, when you go back to the disabled crowd, it is just like…sigh of relief. My people!

For example, one of the reasons I think I was so social in the 90s was because in college, a lot of people don’t have cars and college campuses are very walkable. So, I was able to come and go as I pleased for the most part, which gives not only myself, but other’s who might have felt the obligation to drive me more freedom to do what we wanted when we wanted. The disability community does not give a shit if I take the bus to meet you somewhere or take the bus home after midnight because I am tired. The nondisabled community acts like this is a fate worse than death which makes it awkward all the time.

When I went to KU for grad school it was more of the same. I was put in the gimp basement with the other disabled people and we hung out. I got involved with the Blind Students Division so befriended more blind folks. One interesting thing that happened was that a professor was really pushing me to be friends with these couple of women in my class (in grad school you have class with like no more than 8 or 10 people and you sit around a conference table with the same 3-4 professors, so it was a small group.) These women were nice enough, but they sort of treated me like a charity project. Again, I gravitated towards the student with CP that typed with her toes and the student with a hearing loss caused by a cleft pallet which still left some disfiguring of her face. There was again the assumption that I should socially “do better” as if I should drop the disabled friends and “marry up” to some nondisabled friends. I think her motivation might have been more inclusion/less segregation. But again, I was put my entire life with disabled people in all the rooms and seating and dorms. Every single day of my life I had to walk into the classroom, grocery store, workplace, etc. as the only disabled person with all eyes on me. You need time off from that. The flipside of that was that all these nondisabled folks were spared exposure to us as well and we became like a novelty to them. It is hard to create genuine friendships under those circumstances, even if everyone has the best of intentions. We all got along ok, it was just never a very deep friendship.

When I moved to Oregon and was looking for work, I started substitute teaching, which brings up another thing that happens socially to disabled people with very visible and stigmatized disabilities. Every time I went to a new school, I was afraid of what would happen when they found out I was blind. What saved me with subbing was their desperation to have an adult body in the room at the very last minute. Subs were assigned via an automated phone system, so no one knew I was blind till I got there. But in other areas, I did not have that leverage. I think every disabled person carries around a low level (and sometimes high level) of anxiety about what kind of social barriers they may run into. It doesn’t happen all the time, but happens just enough to make you always worry about it. When I go to the doctor, will they help me with the paperwork or kick me out? When I go to the parents meeting, will anyone talk to me? Will I be able to participate? Will they bother with the accommodations I asked for? When I go to the skating rink, will they let me skate? Will they call me a faker? When I cross the street, will they stop for me? When I go shopping, will someone help me find my item? When I go to the bar, will anyone bother to tell me where they are sitting and ask me to join them? It goes on and on and every time you leave your house, there are always these things to consider.

I ended up getting a job at OHSU and worked on grant-funded projects that provided research about and some service to adults with disabilities. There were a handful of my colleagues that had disabilities as well. Mostly it was good there, but sometimes I felt like they pulled the disabled people out and hid them away like props depending on whether they thought it politically advantageous or not to have us around.

At my job performance reviews. I got good reviews for my work. But I also got that I was not friendly enough. “You just don’t care,” said my supervisor. I shut myself in my office and didn’t go around and talk to anyone like I should to built rapport. It was not true that I didn’t care. I certainly did not want to hurt anyone’s feelings or be an inconvenience for anyone, but I think this was more of a logistical issue for me.

By this time, I was starting to be a real deafblind person instead of just a blind person. As an accommodation, I had my own office because I was on the phone a lot and my phone was really loud and it was easier for me to hear without background noise. Also around this time, I was starting to have kidney issues. I was in and out of the hospital and was on some medication. I was FREEZING in that office ALL the time. Like wore my coat freezing. Another coworker who was quadriplegic needed it to be cold. So the compromise was that since I had an office, they gave me a small space heater and I shut the door. All I wanted to do was be in that office with the heater on and the door closed. It was not meant as a snub to anyone. Anyone was welcome to come in my office and I talked to them when they did. But generally, it was becoming exhausting to talk to people all day, I was on the phone for my job enough, I was cold and sick, and I was not making a grand social statement. Just trying to get through the day really. But I guess people read into it that I didn’t care and was antisocial. So then I made myself do a twice a day tour of the side of people’s desks. Thank god I had my guide dog, Mara, to socially intercede for me in these sort of contrived interactions. Everyone loved the dog, so face it. That’s probably what they really wanted.

The 2000s.

I had started skating in the late 1990s in Oregon when the #adultsskatetoo movement was just starting. I noticed here that a shared skill or interest can sometimes trump a disability. That was the majority of my social life for many years, adult skaters. None of which were disabled. Well, I did have a friend who worked at the skate rental desk who had Down Syndrome. I needed him to watch my dog as I skated and we had a whole thing where he called me his sister and I called him my brother and Mara, my dog was our little sister and what not.

One of the adult skaters I was friends with said, “wow, you are so comfortable with him, how do you do that?” And I was like, because he is a person and he’s funny, and he takes care of my dog—what? I told him he needed to get over himself and he needed more exposure to disabled people. I asked him if being around me made him more relaxed around other blind people and he said, well, I don’t think of you as blind. You can skate! Here is another thing that happens with nondisabled people. It’s this trying to classify you as anything else than just an equal person along side them. Maybe, like this guy, they would get it in their head that you are not really disabled. I can skate. Blind people can’t skate. Therefore, I must not be blind. I told them that there are other blind skaters who have no vision who skate. I have some vision, but I can’t drive a car, I can’t see at night like at all, I can’t really read print, I am always working and strategizing out on the ice to not run into people and it does limit my progress as a skater. But his version was just to not think of me “like that.” He meant well, and we were friends for many years before losing touch.

The other versions of this are to either put you up on a pedestal (“you’re so amazing that you skate”) or put you down as an object of pity (“I’m so sorry for you, here, let me hold your hand every minute on the ice and hover.”) Both may come from good intentions, but neither put you on a level playing field. The problem there is that you never get past the acquaintance phase of friendships. It gets stuck. People don’t see you as someone they can relate to if you are up on a pedestal or down in a pity pit. But mostly, I had good relationships with the fellow skaters because despite whatever they may have thought about me being a disabled skater, we didn’t talk about it. We talked about skating.

For a while, when I became a parent, this seemed to be the case, too. I was involved with mom groups at Gymboree, or at the UU church or at my kid’s homeschool coop. For a while, momming or homeschooling seemed to be enough of a shared interest to trump the whole disability thing.

Then, the most flippin’ bizarre thing happened. And Nik and I have talked about this, so he knows what I am about to say. I had worked for 6 years, with some success, to build communities for my kids. When Nik came into my life in late 2009, it all collapsed. Like instantly and unequivocally. It was bananas. People who I’d talked to for years stopped talking to me. People who I had volunteered with and for did not want me to volunteer any more. It was sudden and always happened soon after the first time they met Nik. Whatever tolerance they had for me before, as a mostly normal looking, low vision/low hearing person was tipped over the edge to intolerance and ablism when Nik, who is totally blind and very visibly blind with eye abnormalities, came along. Instead of being Lisa, the mom who has trouble seeing and hearing sometimes, we became that blind couple who are really, Really, REALLY fergin’ disabled. So disabled that it’s freak show time.

Which pissed me off. Here I was in all of these supposedly liberal communities that are all about acceptance and tolerance and inclusion and it was all virtue signaling crap. DEI, my ass. . It made me not want to deal with any of those people anymore, although in every group, there were always a few nice people who were not like that, it was annoying and you never quite knew what you were going to get. Even when Nik won some of these people over because he is such an extrovert networker, they still scaled back to the sort of acquaintance/tolerance stage. I had volunteered in childcare for years with no issues, and now I had people coming in to watch me and criticize that I let the kids be too loud, when it was the same as always. We even saw people get up and leave when we sat down at a shared table. We became outcasts, because I married a guy.

A problem that many disabled people have, especially in the mom social economy, is the problem of reciprocation. Before Nik’s appearance apparently marked me as TOO disabled, I had participated in the sort of mom economy where we share childcare or rides or food or birthday party invites or cupcake bringer or what not. I did favors for others, they did favors for me. After Nik, I was effectively kicked out of that economy. (To be fair, I had always had trouble with this issue, but for a while, the mom thing seemed to trump the issue. It may have been a case, like skating, where if I was a mom, it meant I wasn’t blind, because blind people aren’t moms. But then Nik proved my blindness bonafides to a level they couldn’t ignore). Suddenly, even though I still offered to watch kids, bring cupcakes, etc. I was no longer asked to. When people perceive you as not being able to offer anything to the community, they largely stop sharing with you as well. Sure, there are exceptions, but everyone who drives can get the occasional ride to work or to the airport because implicitly, they know they can ask for that favor in return. If you can never drive them to the airport someday, and they don’t even perceive anything else you could do to be worthy enough, you are knocked out of the shared community economy. It doesn’t matter how inspirational they think you are, you are not one of them and you are not included. So, after a while, I just kind of gave up the stress of even trying much in these communities. (I mean, it had been YEARS of trying.) I started not setting foot in my kids’ school unless it was a very special event they were involved in. They seemed to fare better that way.

This is also why “asking for help” is such a bloody minefield for disabled people. First of all, I can’t tell you how many times I’ve asked for help and been told no, or gotten a reluctant yes but with the caveat that they can’t do it all the time (I had not asked them to do it all the time.) But there is this idea that if someone gets dragged in to helping a needy disabled person, they will set a precedent to be burdened for life. OR they want loads and loads of thanks and appreciation (beyond reasonable appreciation) and it becomes sort of a white knight thing where they are pushing help upon you not because you asked for it, but because of how it makes them look. Or if you ask for help, you will be percieved as being incompetent. For example, if you ask someone to help you look at something on your child’s skin, all the sudden stories will come back to you that you can’t really properly raise your child because you needed someone to look at a thing on your child’s skin…when that was exactly what you were doing to take care of your child. The person saved you an unnecessary trip to the doctor maybe, they did not save your child from you. Or they may help you once with dinner and then go and talk about how they cook dinner for you all the time because you are blind, and never think that you cooked all the other dinners yourself that month. On the other side of that, if you don’t ask for help, you must have a chip on your shoulder. You must be an angry gimp who “has too much pride.” You can’t win this no matter what you do with many people. You learn that people are going to think whatever they want to think, and asking for help when you are disabled is not the same thing as asking for help as a non-disabled person. The whole asking for help thing can be a rather insidious tightrope to walk.

The 2010s

The irony of Nik’s effect on my social life is that he is the most outgoing, extroverted person who literally does not give a shit if you don’t like him because you think his eyes, the way he moves, his weight or whatever makes you uncomfortable. He networks with everyone, all the time without any reservations whatsoever. For me by the 2010s, between a combination of anxiety about the odds of which person is going to exclude, reject or put barriers in front of me and my decreasing means of being able to communicate in the usual nondisabled ways, I started throwing a lot of the social communication responsibility onto Nik.

Nik was making all of my medical calls, school calls, etc. If I couldn’t do it via email or online application or text, I threw it to Nik. But as he got busier with work, it became a problem when I would have to wait 3 days to have him make a doctor’s appointment for me or return the school’s call about a field trip or something. So I know I was going to have to find effective ways to communicate on my own.

At that time, my deafness had increased a lot and I didn’t really have a workable method of making phone calls. Or sometimes, even talk to people in person in loud situations. I looked to the Deafblind community for advice. Say what you will about the evils of social media—which I get—but for some communities like the DB community, social media opened up a whole new world of connection for them. Deafblindness is extremely rare and before social media, it was extremely difficult for any one DB person to talk to any other DB folks. Now there are DB communities of several varieties online, and DB people can directly communicate with each other, which they often couldn’t do before without the use of multiple interpreters.

Deafblind people communicate in a variety of ways depending on their background and skills. Many come from the world of ASL and ProTactile and might not have good written English or read braille. Some, like me, come from the blindness world without a strong background in ASL, but a good background in Braille and written communication. I took my cues from people similar to myself, like Haben Girma, who communicates with a braillle display and a QWERTY keyboard that she hands off to the person she wants to communicate with. That person types, she reads it on her digital braille display, and then she is able to vocalize back a response, as am I.

Since everyone texts now and no one hardly calls anyone, changing up my communication to text based and TTY based for the phone did not seem like it should be that big of deal. Nik and I spent countless hours practicing with different keyboards and braille displays and apps to find out what would work. I made a concerted effort to work to improve my braille reading speed and accuracy. I started taking over some of my communication tasks from Nik. First by doing my own phone calls with TTY. (TTY works via online app. A relay operator talks to the person I am calling and types what their response is to me,which I can then read and respond.) I was a bit excited to try to get back into the world again with my new adaptations.

>>>>record scratch<<<<<

From the time I was a kid with funny glasses, to when I started using a cane, then a guide dog, then a guide dog 2.0, then marriage to a capital B Blind person, then TTYs and Braille, I have noticed the difference in the ways people perceive you as to them, you come off as more and more disabled, even if you can—using accommodations—effectively do the same things you’ve always done. You are essentially the same person, maybe with a couple more accoutrements, but the same person you were yesterday. Yet their whole perception of your ability and worth as a person keeps circling the drain deeper and deeper into the toilet.

The way I was treated when trying to explain to people that I either needed to text or use TTY or hand them a keyboard to communicate was nothing short of appalling. Although my actual physical disability was gradually changing as such a minuscule rate as to barely be noticed, adding one more thing, like just explaining that I need to text, or message via MyChart—things people largely did anyway—took the ablism I faced to a whole new level. One of the reasons I am sitting here in Omaha, with an Omaha transplant team is largely because my first interactions with OHSU during the height of the pandemic when no one was meeting in person and I was communicating via TTY with them. They about lost their shit, and never seemed to fully recover, even though I eventually was able to meet with a couple of them in person and use voice communication.

So, this was another set of anxieties for me. Every time I communicated, it had the possibility of turning out disastrous where doors would be slammed tight instead of opened. In all these situations, it is never everyone. There are always people who are cool and who just adapt quickly, and work with you. But there are always just enough to create that anxiety about every interaction. Is this interaction going to be positive, or workable at least, or a dumpster fire of ablism?

The anxiety causes me to try, somewhat subconsciously as I’ve done a lot in my life, to *Pass* as nondisabled as I can pull off. This then becomes sort of another reason to be anxious. Because trying to see and hear and act like sighted hearing people do is REALLY HARD WORK. And often it doesn’t work so you miss a lot and then have to use your brain to figure out what you are missing and fill the holes and think of a proper response. The responsibility always falls to me to make the other person more comfortable, not the other way around. The deal seems to be that I have to meet people all the way, straining as far as I can, because if I can’t or won’t do that, I will fall into their category of too disabled to deal with.

The 2020s

My ability to communicate in traditional ways is limited by time before my brain gets too exhausted to do it. It’s like, if someone was throwing math problems at you, you could probably sit there and do them in your head effectively at first. But after hours of it, your brain would fatigue and you would just start flaking off and you might get headaches or stimulus overload or something.

As I’m dealing with this brain and auditory/visual stimulation fatigue, I’m also well into stage V kidney disease and on the transplant list by now. This brings in what I will call physical anxiety in social situations. Especially as a person who cannot drive. If you have a serious chronic illness, you become high maintenance. Maybe you need a bathroom, or a source of water at all times, or a chance to lay down and rest, or less noise or light or access to pain meds which may make you dopey or you h ave good days and bad so it is hard to commit to anything. All of these things make going out to socialize kind of scary. When you have to depend on someone for a ride, it becomes more out of control and more anxiety ensues. Again, I’d rather take the god forsaken bus than have to worry if I can go to the bathroom because my ride has gone off somewhere or whatever. Or if I will have to bow out early because I’m just too tired. So these physical aspects became Very Big Deals in the last few years and basically overtook much motivation and energy to try to socialize.

…and finally here we are in Omaha…

At six months post transplant, I’m still trying to figure out what my body is capable of. I am not cured, I was given a bit of a reprieve from running towards death. I seem to have more good days and more energetic days thus far, but I still have bad days. I have been able to improve my hearing aid situation in the last couple of years which now allows me to make short phone calls and hear a bit better. There is also new technology like automatic live captioning, which is far from perfect but can help to the point where I don’t need a relay operator for many calls. I still have communication fatigue, and I still have “holy shit, is this next interaction going to be positive or hit the fan” anxiety.

Nik went back to Portland to be with the kids but also specifically because he knew that I needed to not depend on him so much and see what I can do. (The irony there is most people assume by looking at us that he is the most disabled one who depends on me, That was never true, but it the last few years, it couldn’t be farther from the truth. He has really taken on the role of caregiver, and I’d like that to stop or at least significantly decline.) In the first few weeks without him, I was struggling to do the basic things to just take care of myself and my dog. Cooking, laundry, taking the dog for walks, getting myself to my own appointments without his navigational and communication help was all I could concentrate on. I have gotten much better at it, but it took a while.

Lots of people have reached out to me. People who I like and who I want to connect with. And I have ignored a ton of them. I have sat there and spent days working myself up to replying to a simple text. Then I think, I’ll just do it already. Then…they text back and I have to reply!!! Oh NO!!! The relief was short lived. I know it’s ridiculous. These people who are reaching out to me are not people I need to worry about much or be scared of. They are the old crew who’s been around for years. And then I still have to talk to people I don’t even really want to, like the pharmacy financial office who CAN’T DO ELECTRONIC PAYMENTS LIKE ITS 1989 and can’t fathom that its hard for me to pay by phone because I’m deaf and blind so can’t read the card easily and OMG can’t your caregiver do it for you??? ongoing bullshit ad nauseam. So, then that means that I’ve worked up all my mojo to deal with their asses so someone I actually like got put on hold for another day. Still, that is where I’m at. I guess the grand very obvious conclusion from all this is, DUH! I guess I have developed social anxiety disorder for SOME reason. <shrug>

So, I’m trying. I have a list of people. I’ve not forgotten anyone. And THANK GOD for my online friends who’ve known me for like 20 years and never expect me to show up in person or talk on the phone. Thank you guys! Decades long online friendships are the best, it’s the new normal, right? But to everyone else, it really isn’t you. It’s me. That and my above mentioned 15 paragraphs of shit.

And also? I’m good though, besides this. I love my little solitude in my little apartment more than is probably healthy too. But I will be going Back to Life, Back to Reality soon and taking whatever nerosies want to come along with me.

Guide Dog Supplemental: More Adventures of Mia and I and Treacherous Tuesday

Mia and Cobey at the dog run at my apartment building in Omaha.

I couldn’t decide whether to make this a part of my guide dog series or not. (What’s the Matter With Guide Dogs? (Chapter 1: What happened at the airport?) It’s just a progress update to try to get myself writing again. But it may help if you know the background that I’ve written about in that series.

I’ve now had my guide dog, Mia, for just shy of 9 months. She will turn 3 next month, and Nik’s guide dog, Cobey, turned 3 in June. Although there has been a lot of progress, they are nowhere near where I would expect to have a dog that has been with us this long and who are 3 years old. Still, there have been lots of improvements.

I will start with Cobey, briefly because he is not my dog and so I can’t say I have a detailed knowledge of how he is doing, especially since Nik and I are now temporarily living in separate cities. Cobey remains a very loving dog and loves attention. I do think his desperate need for attention and to be touching a human at all times has gotten somewhat calmer. As far as guiding, 2 main things seemed to help a lot. The first was—except for meals, of course—discontinuing all food and food rewards. Food aggression has been an issue, in that although we usually have always fed our dogs together with their own bowls, Cobey was way too aggressive towards us and the other dogs when we did this so we had to start feeding them separately. Which is not that big of deal. But he couldn’t guide with rewards. He could do ‘tricks’ like the stop at the curb trick and stop at the stairs trick, but he lost his shit about everything else if there was food around. He was literally so focused on Nik and the food pouch that he would run into things (or run Nik into things) If I had food for Mia and Nik didn’t, his attention was entirely on me and he would ignore Nik entirely. Nik cut him down on food rewards gradaully over about 7 days or so and then cut him off.

Nik and Cobey standing in front of a Chilully glass art display at the Buffet Cancer Center where I get my IV infusions.

It was a changed dog. It wasn’t instant, it took several days before he stopped looking for food. But he started paying attention to Nik more and actually started to figure out the job of guiding. Since Nik will actually smash into things if Cobey doesn’t go around them, you started seeing him thinking ahead about obstacles in front of him. The other thing that helped tremendously was for Nik to stop using his body position and hand signals when crossing streets and to just use words at intersections. Before, when Nik would go up to an intersection and not be exactly aligned, Cobey would use where Nik’s hand signals went and where his body position was to cue him into what angle to cross the street at. By just stopping and doing nothing with his hands or body and just saying “forward” when the time is right, Cobey figured out the intersection for himself without following where Nik’s body went. It solved 100% of Nik’s intersection issues in just a few days. Now, Cobey just uses his little dog brain and aims for the other curb with perfect crossings. I have seen Nik be all askew at an intersection, walk out at a 45-degree angle, and Cobey just correctly straightens and walks to the opposite curb. The less Nik points with his hands, the better Cobey does. And yes, he understands English. Now, the main issue they are working on seems to be that Cobey walks incredibly slow. My best guess is that he has finally learned the overall job and is concentrating on it, and maybe as he gets more comfortable he will speed up? But I’m not totally sure what is up with that.

Nik with both Cobey and Mia at the infusion clinic. They are tucked under the little couch while I get my port set up, which we try to keep as sterile as possible.

So, Mia! Where to begin. I know there is talk about how it takes a year to get a new guide dog fully adjusted. I call bullshit on that. It should not take that long. I would say the most adjustment should be in the first 2-3 weeks, but then by 3 months, all should be fairly well and adjusted. At least that has been my past experience and the experience of many others. What I am doing now with Mia is an anomaly and really the only reason I am able to do it is because I am in the unique situation I am in now, where my kids are mostly grown, and I am stuck in another city recovering from my transplant. Basically, my responsibilities here are to take care of my health and recovery and to work with Mia, with a small amount of assistance to family and business administration issues. If I would have had to come home and start a 9-5 on Monday morning, there is no way I could have kept Mia and do what I am doing, which is to retrain her from scratch.

I mean, that isn’t totally accurate. It is not quite like I am training a new puppy that has no inkling of guiding at all. She has good obedience and sometimes I can see that something clicks with her that she has learned before, or she half knows to do something, but not quite in the way that makes practical sense. The other side of that is that I still can tell that she has been damaged for lack of a better word. One of the main things we have been working on is just simply bonding and for her to see value in our relationship, because she largely doesn’t care too much about people except when they feed her. She is in to DOGS.

Mia and I outside the Lied Transplant Center next to a sign that says Nebraska Medicine Lied Transplant Center Drop off/ pick up. The last two years when I had to come once a year, I had taken this photo with Marra. We joked that you could get your drop off/pick up kidney in the drive through because that is what the sign says.

Her bond with Cobey is one of the strongest I have seen. I don’t know if or how much time they ever spent together when they were kenneled, but since then, Cobey had her entire attention and interest. To the point where Cobey would come and hide from her at times. When Cobey left here in June, I grew concerned that I had set her back again with yet another thing she loved that was taken away. She did not spend much time with me voluntarily when Cobey was here. And when he left, she hid under my bed for much of the next week. She would come out for food and walks if I got down on the floor and coaxed her, but that was it. I spent a lot of time those first couple of weeks just laying on the floor and reaching way under the bed to pet the tip of her tail or a paw that I could reach. Slowly, she has come out more over the last few weeks and will now readily voluntarily sit with me and engage with me. Although it was not totally in the plans for my transplant logistics to be like this, I think us being alone in the apartment together was the best thing that could have happened to us. She is still very into other dogs and I try to give her dog time in appropriate places like our apartment’s dog run where there is never more than one or two other dogs. But now, she is being more personable with me and also with other people. Some of my relatives came the other day and she was all in to visiting them and getting pets from them. In the past, she might come for a second and have a sniff, but then she would revert to playing with Cobey.

Mia spent days and days under my bed after Cobey left and would not come out except for food or outside. It was reminiscent of when she wouldn’t come out of her kennel at guide dog school.

Our transition to Omaha for my transplant was not ideal for a new guide dog but I don’t think it was that devastating either. A few months after I got Marra, I broke my foot and was on crutches for two months. I was actually fairly stationary in my house because its almost impossible to go anywhere when you are blind and on crutches with no hand for a cane or dog. I asked my trainer, Mike, if I should worry that Marra would forget everything in her training and he said not to worry about it. I started using her again when I had a walking cast, so I was still walking a bit oddly and slowly. It was a nonevent. She just picked up where she left off. So, I figured Mia could handle a few weeks off. She had 2 changes of location. She went from Oregon to a hotel where she stayed for 17 days, and then to the apartment where she has been ever since. After about the first 24 hours, when they figure out that they have their food and water and outside time and a place to sleep, neither dog seemed too phased by the change in location.

One of the times Mia came to visit me at the hospital and I did my hall walk with her.

From December 21-February 2, I was in the hospital a total of 23 days. And when I was home, I could not use Mia. So that was the biggest break from work she had. However,  her main caretaker, Nik, was a trained guide dog handler who also graduated from the same school. He did bring her to see me a few times in the hospital. Although I had a short 3 day hospitalization in early April and a weekend trip to visit my dying father where she stayed with Nik, she has been with me and we have done at least some kind of work on guiding consistently. In early February, it was just short walks around the apartment building outside and I had to use a support cane, too. But we built up over time. Starting in about mid March, I started using her as a guide dog to places I actually had to go, like doctor and lab appointments, plus additional walking. Because Cobey couldn’t deal with Mia getting treats without going cuckoo bananas, I often had to not use treats when he was with us and then walk by myself with treats without Cobey later in the day to work on guiding specifically. My point being, although not ideal, she had less time off guiding than Marra did when I broke my foot. I don’t really think our 43-day break, when she was still with me or another guide dog user, was responsible for the issues she has guiding, although I recognize that it did stall any progress we would have made during that time.

One of my early walks with Mia and my support cane. Mia pulls a lot sometimes, and at that time I was not strong enough or well balanced enough to stay upright when she was that unpredictable, hence the cane. It took me until about mid March before I was confident enough to use her on every day trips without the cane.

The first thing I noticed about Mia is that she can have decorum and stay nicely seated like on a bus or in a restaurant if I take a zero tolerance approach. She still gets up every time a waitress or nurse comes toward her—not to greet them, but to get away from them often. We are still working on that. But generally, I was a hard ass both in Portland last winter and here when I started taking her to the med center with me. I insisted on good behavior on the bus, in the waiting room, etc. It took a lot of just constantly having to be on top of it and not get distracted or set it aside, but she did develop good behavior. What happens sometimes is you get distracted with something and you let stuff go. Once, I was not paying attention at the coffee counter and a barista had offered her a “pup cup” of whipped cream. She put her front paws up on the counter. Absolutely unacceptable (as was the pup cup, but I don’t blame Mia for that one.) Lo and behold, I went to a completely different coffee shop later on and the first thing Mia does is jump up and put her front paws on the counter. So, then, we spend the next two weeks orchestrating trips to get coffee with her in a heel/sit position. She is doing good with it now, but with this dog, you have to be vigilant. In the past, except for rare occasions, my dogs were already doing this when I brought them home, so I never really thought too terribly much about decorum and manners. You could get distracted to the point of forgetting they were there. But overall, Mia’s decorum has been much improved.

The other biggest improvement is targeting behavior. This dog can target with about 3 lessons. Remember when the trainers told me she could find a chair in months and months? No, I’d say about 3 visits and she has it. She can also generalize. She brought with her from Portland (even with 43-day break!) targeting trashcans and pedestrian signals. I had her back to doing those in about 1-2 lessons each. Except for the bus (??) she can also find chairs and it did not take months and months. Pretty much anything new that I taught her she learns quickly. I do start a new skill with treats, but since she has bonded with me more this summer, she is doing more and more things without treats and with just praise.

Mia targeting a trash can. She has done all different kinds and flavors of trash cans, from dog waste bins to these street cans to the indoor cans at coffee shops.
Mia targeting a pedestrian signal button. She actually learned this in Oregon, and it transferred to Omaha no problem, even though she had gone over a month without doing it and the buttons looked a bit different. In this pic, I am pointing to it because I took too long to get my camera out so had to make her do it again, but she does it on her own, normally.

Another vast improvement is a category I will call “finesse.” This is stuff like how gracefully your dog can get through doors or into a car or bus or under chairs or all the tight spots that you must maneuver with a dog. At first, she was a complete klutz. I was all…has no one taught you how to walk through a doorway? Most guide dogs stay on your left like it’s a religion. To walk to your right side is practically sacrilegious. Mia thought it was a good idea to walk behind me to my right side and get all tangled up. At first, I thought, did they teach you a different way to get through doors where you walk to the right? But this is definitely something I remember asking her trainer about and I demonstrated how I did it and Kat said I was correct in how I was doing it. Also, to me it seemed more like more of an “ADHD” thing than a method she was taught. She did it most when she was interested in something else, and she is often interested in something else. My way of teaching her when she got all tangled up was to just stand there and give the heel command and wait for her to get with it. She did not like not moving, so she was motivated to get in position for us to move again. “Finesse” is still something that is a work in progress. The other thing that helped was moving her back to the traditional harness instead of the unifly. I still like the unifly, but she can’t get so twisted up in the harness with connections to both shoulders. When I use the unifly and she is twisting herself into a pretzel by pulling my left hand behind me and pulling to the right, the unifly handle just gets twisted, too and gets all loose and my settings get undone. I have more control over her craziness with the traditional handle. Getting into cars or on the bus, sitting down in restaurants without a big production, etc. But there has been a lot of improvement in this area.

Another one of my earlier walks with Mia down a sidewalk near my apartment. I think this might have been my first walk without the support cane. Since Nik went home, I don’t really have anyone to take pics of both of us now.

What are our biggest challenges today? I hate to say it, but it is the most basic of guiding. Walking without hitting me into obstacles, stopping at curbs, Going left and right. Guiding properly on leash, walking a suitable speed. It’s wild what she doesn’t know. I mean, even Barley did a decent job with basic guiding. Ok, a couple of these she does well with food but screws them up without food (left and right, stopping at curbs), and others it seems like no matter what, she doesn’t get them. (Obstacles, straight lines, not going at curbs until I say so.)

Once a week, we do a walk I call Treacherous Tuesday. Tuesday is trash day around here, and so everyone has their dumpsters and trashcans blocking the sidewalks. In addition, the neighborhood is old and has bumpy, crappy sidewalks with lots of overgrown bushes and trees. Treacherous Tuesday is no fun, but it is an excellent time to work on obstacles. She does not naturally stop for things like large bumps in the sidewalk, tree roots, or even trashcans. I’ve had to teach her all these things. There are days now that she does beautifully, and days when—well, when I was on blood thinners for a few months—I had a ton of bruises because of her. It’s not that she doesn’t know how to do it, she does. She just doesn’t care. She gets distracted by smells and is constantly thinking about other things. Every guide dog gets distracted at times. You may remember my trainer, Mike, saying what we are teaching them to do is easy. It’s keeping them interested in doing it which is hard. It is hard to keep Mia interested in her job for very long. Even with treats, she doesn’t care if I run into obstacles. She goes around them with enough room for herself but not me. This isn’t just a brush,  this is a full on crash. And she doesn’t care about the crash. It’s not a deterrent. Recently, I found out that she does not care about fireworks, either. She was sniffing the ground happily while in Omaha, 4 bazillion people were lighting loud fireworks all around her. She did not even flinch. So, making big crashing noises when you run into a trash can doesn’t even merit an ear perk. She doesn’t care. It makes it hard to teach her to understand her job. She is still doing tricks for food.

The other thing she does is when she does stop for an obstacle, she is sort of clueless as to what to do next. So she stops, I give her praise and/or a treat. Then I would say “forward” or with my GDF dogs I would say, “find the way!” And if they physically could, even if it meant going off curb for a bit, they would find the safest way. They would always default away from the street, but if that was blocked they would take you to the street curb and you would step down and then they would hug the curb until you got past the obstacle and then take you back to the curb to go back up. Mia and Cobey just stand there, confused. So, you kind of have to map it out for yourself with your feet or whatever, and they almost end up trailing behind you while you do this. I’m working on teaching her “find the way” and sometimes she will do it now, but sometimes she still just stands there, confused.  She can generalize between 8 thousand different kinds of trashcans, but she can’t figure out how to walk around a single barricade on the sidewalk. It’s strange.

 

The curb stopping (or going) thing is bizarre. She does most of the time stop at curbs. She does it very well when treats are involved. But she does not get that then you must wait. She is doing a California stop. She stops for a quarter of a second, and then pulls to keep going. It does not matter if car after car is careening inches from her, if I don’t hold her back, she will pull you forward. So, that is something we have been working on a lot. I have to say “to the curb!” And then when I get there, I have to tell her to stay. This all goes back to that whole thing of intelligent disobedience. It made me think that the trainers don’t really understand what it is. The one I asked about how they train it started describing something that was NOT it, it was just stopping for moving obstacles. Which—good skill—but NOT intelligent disobedience.

Mia’s favorite thing is to roll around and play with dogs, or lacking that, a human that acts like a dog. It’s a bit rough-housy for me especially after major surgery. But at least once a day, I put a pillow over my side and get down and play with her like she likes to play. It’s a lot of play biting and batting of arms. I think she likes it. I’m trying to teach her to fetch a tennis ball, which is more my speed.

The last thing I will talk about that we are working on is guiding while off leash. Nik always went crazy over this skill and I never gave it much thought, until I had a dog that was not trained this way. So when she heels, she walks behind/beside you. I guess that is what sighted people train their pet dogs to do. In pretty much no circumstance is a blind person going to use a guide dog like that, so I don’t get why they do it. How do they think we live? To take my dog out at my apartment, I go maybe 20 feet down a hallway, then I find a door and go through a stairwell area, then I open an outside door, walk a few feet and go down a short flight of stairs. Then walk a short distance and she can do her thing. Do they really expect me to put on her harness 4-5 times a day to do that, then take it off when she goes, then put it back on to do a walk that takes maybe 30 seconds tops? That’s stupid and no blind person does that. You take your dog out on the leash. But here is what kind of stuff can happen. I take my dog out, there is a truck parked along the road. I pay little attention to it. I don’t realize that it has a metal ramp coming out of the side of it and going across the sidewalk. Mia does not stop and goes right over it. I….do not. Any other dog I had (probably even Barley and Sully) would have stopped for that ramp, even if just on leash. They would stop for curbs, obstacles, etc. I even had to teach her to stop for the up and down stairs when going out. And what if there was a fire and you have to get out right away? Are you going to have to grab the harness? I get that guiding on leash is not ideal and should not be used for more than very short trips, but I cannot think of a single circumstance when this separate heel beside you and not guide is useful. Even if you go sighted guide, I was taught to always use my cane because you are still responsible for yourself. So if I drop the harness and go sighted guide, I would very much still expect my dog to stop for stairs and obstacles.

As a joke, I put Mia in my assigned parking spot I never use but am required to have. She didn’t get the joke, she just thought I was weird. But this pic is an example of her good obedience skills.

The last, last (really this time) thing I will talk about with Mia is what I call her “Toddler Temper Tantrum Mode.” And I say this with some loving amusement. It doesn’t happen every day, but there are times when Mia has an absolute shit fit when she doesn’t want to do something and refuses kind of dramatically to do it. This is stuff like getting on the bus or when she is not yet ready to go inside or when I want to go home but she wants to keep walking or when she wants to go home but I want to keep walking or really anything she really doesn’t want to do. She digs in, lunges backwards on her haunches, rides up on her back legs and has a tantrum. This has happened less and less, but it just happened the other day. I was doing errands with my sister in her car so it was a lot of getting in and out of the car. The first few times were fine, but then it was like she was sick of being in that car and not getting to walk too much. So she refuses to get in. She rears back, won’t budge and just stares at me. Thankfully, she is only 55 pounds because I had to lift her into the car. I find it funny in a way because it definitely is communication from a dog with her own mind, but I wish it was used more in an intelligent disobedience way rather than an oppositional defiance way.

People ask me why I don’t give Mia back. It’s a bit complicated with my situation right now. And also, I have the time, I have the dog. I should try to make the best of it. But she is almost 3 years old. By the time she is workable and trustworthy as a guide, she will be like when dogs are usually peaking and then starting to decline with age. People also ask me why I don’t call the school and have a trainer come out. I have thought about that, and it isn’t that I hate them or think that they have no useful information. But, I have literally almost trained her from scratch now with mostly my GDF ways (although I have utilized what GEB ways she knows that have always worked for her.) So, now I am afraid that it would just throw a wrench into all the work that I have done and be more of a set back than a help. I have put hours and hours and days and months in doing nothing but training this dog, and I have seen a big improvement. And again, she learned fast new skills that I teach her that they didn’t. She does much worse with things she is purportedly already supposed to know. I don’t trust that having them come out will not reset my work to the beginning again. Nik wants me to give it a year and then if I can’t competently use her in novel situations then she is not a working guide dog and I should give her up. I would only give her up if she went back to her puppy raisers, I could not set her to yet another strange situation. Not after all this bonding I’ve done with her and all her attachment issues. But it would still be hard. Besides the hours and hours I have put in walking and training her, I’ve also put hours and hours in sitting next to her, petting her, playing ball with her, playing like a dog with her (because that is largely what she responded to at first. She didn’t really respond much to petting, but she liked you to aggressively roll around on the floor and fight over a ball or bone or something). It would be a shame to give her up now. Besides, she is so smart and learns new stuff so fast. It is a shame that she was seemingly shelved for so long and transitioned so many times. I feel like if her transitions were kept to a minimum along with her kennel time and she would have had all the training Marra and Mara had in 3-4 months and been less than 2 years old when I got her, she would have been a great guide dog with a lot of good guiding years in her career. I feel like her trajectory was somewhat sabotaged by bad planning and bad training, and that wasn’t her fault. Nor mine. But we’ve decided to work together and we’ve both stuck it out. Although I have had fears that she had or would wash out, she really hasn’t. She keeps trying and thus so do I.

More than anything, she has been my constant companion on this journey in Omaha with a new kidney and all its endless doctor’s appointments. here she is again hanging out during one of my regular infusion visits. 2024 for me will always be Nebraska, UNMC and Mia.

Writing Homework Series: The Bitch at the Amsterdam Airport

Back to my Homework Series as I think of signing up for another writing class. This assignment was to write a story that happened in one scene in the space of about an hour. So this is my chaotic, shameful story of that time at the airport in Amsterdam when it was me. The bitch was me.

No, I did not take any pictures. This is a stock photo of busy Schiphol Airport in Amsterdam showing lines of people.

When I first set foot in the Amsterdam airport after a ten-hour flight, all I could think about was a bathroom. My husband and I, as blind people traveling with white canes this trip, had arranged to have assistance getting through to our next flight to Stockholm and only had about 2 hours to do it, as well as get through the customs line, so I was hoping that our help would be there and be useful. 

But it was a no go. Our airport help came with a cart with one bench that he demanded we get on, but we had our 3 children with us, and we couldn’t all fit on the cart. Of course disabled people are not allowed to have children to deal with. We really just needed someone to walk along with us, but the cart was there and we were absolutely going to have to get on it and trust our children to run alongside or forgo this help. Our helper did not understand English at all. He was not native Dutch, he seemed to possibly originate from a possibly African nation. I don’t usually want to be the Ugly American who expects everyone to speak English for me and am usually fine finding a way to communicate with others who don’t share a language. But we were just getting nowhere here. He would not walk with us; he would not let my kids on the cart. He only wanted us to hand over our tickets to him, which I didn’t want to do. I only show these helpers my ticket, I don’t ever give it to them because, I learned, they have a tendency to walk off with it. I was not going to be separated from my kids in a very busy airport where none of us knew the language. Time and my bladder were throbbing on, we decided to go solo.

First mission: bathroom. My kids could read a bit, and so we IDed the bathroom signs and followed those. I was in one of those majorly distracted, overtired, overstimulated modes where all of my senses and internal compass and patience were failing me. I walked down what appeared to be a small side hall, the kind that might house public washrooms. I saw a lighted area, which usually means there is a door or an opening or a turn to make. I thought I would be going to the kind of public bathroom I was used to, where you walk into a door and then there are sinks and toilet stalls. But when I made the turn, all of the sudden the whole atmosphere changed and there was a peaceful silence and sense of being alone. I turned back where I had come from, and a sliding door opened a bit, then shut. Was I…in the bathroom? I felt around. Tile walls. My knees hit hard porcelain. A toilet seat. Oh! I was in. I am not going to look a gift horse in the mouth. I did my thing.

When I got out, I heard sort of a loud mumble of anger or hostility. My husband was waiting. “Let’s go,” he says. “Before the mob comes for you.” Apparently, I did it wrong. Apparently, there was a whole line of people on the opposite wall of the hallway, waiting for these individual sliding doors to open so the next person in line could go in. In my frenzy, I had passed all of them and just gone into the first sliding door that opened before me. I’d pissed them all off. Ugly American, strike two.

My husband had done some social engineering already and found someone who was walking to the customs line, so after we collected everyone, we walked along with him to the line. Or I should say, lines. There were 4 lines, each for a different group of people, we figured out after a while of standing in whichever random line we found ourselves in. Some were for EU passports, some were for outside of EU passports, some were for other domestic flights. We were a bit of a challenge because we had both an EU passport and American passports. We decided to try to find the outside of EU line, because we had more of those,and it would likely be easier to accommodate my husband’s EU passport in that line than the other way around. But as we were asking the people around us which line was which, all of the sudden our whole line shifted to one side. A customs agent was yelling words I could not understand. My husband, who can speak Swedish, English, and a bit of Danish and Dutch, motioned to get his attention. The man then pulled him out and was taking him away. I physically held on to his arm and said in English that we were 5 and could not be separated. We would never find each other afterwards. Our cell phones did not work in Amsterdam. He then just wanted Nik and I to be pulled out. I figured it was because we were blind. As blind people we get pulled out of every single airport and customs security line we ever go through without exception for extra security checks. But it is usually when we get right up there, not so far back in line. Again, I said our children had to come with us. I’m saying this in English to the air. I am not sure who is listening or understanding me at this point. It was somewhat for the benefit for my husband and kids to know that this is the hill we die on. We are not getting separated. As I am talking, we are being pushed and shoved around. I grab my youngest kid and I tell all of my kids to stay close. They are crabby, but I demand it in my mean mom voice. At this point, everyone hates us. But we link and become one massive blob of people, which is not looked upon favorably by anyone trying to maneuver around us.

The customs agent takes us outside of all the lines. Someone steps on my husband’s white cane and it cracks, leaving him a cane of about 2 feet in length. Almost worthless for navigation now. I take the lead with my cane. Even though the customs agent is pulling him by his elbow, I know the vulnerability of not having any type of cane between you and walls, signs, poles, whatever might punch you in the face or trip you. Sighted guides really can’t be trusted with that sort of thing, especially one who has his own agenda. So, I give the agent my arm to grab. Its unpleasant to say the least. 

He puts us in the front of the customs line. We are next to see the agent at the counter who will stamp our passports. We did not ask for this, and the man behind us is unhappy. He yells in broken English that he will miss his flight. I tell him to please go ahead of us. He doesn’t move. He yells. I gesture to him with my arm, please, please go ahead of us. Its fine. He doesn’t move. The counter is free, and we are up, I give up on the man and move ahead. One of my kids breaks from the pack. She is a rule follower and is horrified that we have been put up front and that this man is so mad at us. I am getting all this as a blow by blow from my other kid. She stays behind the angry man. We are all up at the counter. One by one, the agent examines us and stamps our passports. I tell my daughter to come up here, its fine. We just have to do what these agents say. She is frozen and doesn’t move. The man is yelling at us to hurry up. My husband is disoriented due to his cane and the loudness. I am more used to not hearing than he is. I am better at taking tactile and muffled cues. So, he has become temporarily worthless at this moment. I turn around and do my nastiest hiss at my daughter. “GET. UP. HERE. NOW.” Through gritted teeth. I feel my youngest child flinch. “That man just called you a F(*&^ing Blind American C*&#!” my child whispers in my ear. Strike 3 for the ugly American.

My reluctant, somewhat autistic newly transgender daughter, practically in tears and caving in on herself due to the loud bright unpleasantness, slowly comes up to the counter. She wears a hat, face mask, and heavy coat covering almost her entire head and face. The agent asks her to take off each layer so she can be compared to her passport photo (where she appears as her former male identity) and she slowly complies. The agent—bless her—is polite and lets us through. 

On the other side of the customs milieu, we breathe a bit easier. We still don’t know where our next gate is, but Nik has recovered his bearings and I find an old folding cane in my backpack that I offer him. He social engineers us a walk to our next gate, and we have 30 minutes to spare. We sit in the hot airport and melt into an exhausted recovery. I want to give Amsterdam another try one day. A real visit, where I can show her people my nicer sides.

Test/Update/Practice Post (Finally…)

This is me and Nik’s dog, Cobey, in my most recent hospitalization. Coby snuck in an illegal move here while Nik went to the restroom. He jumped in my lap, harness and all, in my hospital bed. But I missed the dogs so much, I let it go.

I’m writing this post on an iPad, on the Jet Pack app, which I haven’t ever done before. I only have an iPad, a Bluetooth keyboard, and a braille display here with me in Omaha, Nebraska where I am temporarily living. It is not the most familiar to me, assistive technology wise, to do it this way. So this is my practice post to see if I can pull it off and what kinds of things I need to learn how to do to make it work.

I’m in Omaha because…

I finally got a kidney transplant after 883 days on the transplant list. (Applause, cheer noises!!!)

I was just finishing up the previous post, actually. The one in my guide dog series. I was still proofreading and editing it when I got the call from Nebraska at about 9:00 pm. They would only call me at 9:00pm for one reason. In my rush to answer the phone, I accidentally published that post before it was ready and then promptly forgot about it in the ensuing chaos. I see now that it still needs a lot of editing, which will be another things I will have to practice and learn to do on this application.

But a lot has happened since then. A bit before I left, my retired guide, Marra died. I think I wrote about that. I am still grieving yet from that awful experience. Then, my family’s Christmas plans went up in smoke as I left on December 20 and was in the hospital on Christmas. I may write in more detail at some other point about the roller coaster transplant ride it has been since then, but in very brief summary: My transplant did not initially work. I had many complications and follow up hospitalizations. I had a renal thrombosis (blood clot), then I started literally dying over the next couple of weeks until they found out that I was having a toxic reaction to the main transplant drug, tacrolimus. I now have to do every 28 day IV infusions of a different drug for the rest of my life. Then I got a Klebsiella bacterial infection and had to get a port and be on IV antibiotics. In between all of that, my father was dying. I was able to visit him twice when relatives were nice enough to drive me to his assistive living center three hours away. I was able to visit him once when he was somewhat coherent and knew who I was, and then saw him the day before he died when he was not conscious. He died March 21st, nine days before his 82 birthday. More ridiculous family drama is coming out of that, but I am not going to publicly write about it for now.

Between all of that has been dealing with the FAFSA nightmare this year (If you know, you know and you have probably suffered, too). Trying to get my 19 year old daughter through her last semester of high school and launched into college from afar. Somewhat parenting my 14 year old from both near and far (he was with us for the first three months in Omaha. At first he was a great help, then he became a lump on the couch and I know I had to ship him back home so he could be in his routine with his activities and people and become a productive citizen again. It has been working nicely. And frankly, he is better and holding down our Oregon fort than our daughter has been.) Also setting up our temporary digs and getting to know our way around Omaha. Yes, I grew up here, but where I lived, no busses go…so I am in a completely new-to-me part of town. And then getting used to walking at all, walking with a cane, taking a bus, and walking with a guide dog again.

Mia and I have not had the easiest time, so I’m giving us a lot of grace. She was mostly taken care of by my kid and husband the first couple of months here. Every time I would just get started walking with her again, I would end up in the hospital and disappear on her again. But the last few weeks, she and I have been back at it. I still am astonished by her and my husband’s dog’s large gaps in training and some of their bad habits. But we love them and they are the dogs we have right now. So we work with what we’ve got.

I did plan to write a final post in the guide dog series. And I still want to do that. I have recommendations! Things that I think would improve guide dog training. And expectations that need to be had by all. And I do plan to still do that. But I needed to make sure that I could write and edit a post first.

I will be in Omaha for a few more months before I go back. I want to get a little further out past the six month danger period for rejection while I’ve got this whole team of medical people up the road. I also am enjoying that I am maxed out on my insurance cap here so no more hospital bills for me in Omaha, but I will have to start over when I move back to Oregon. And my big challenge coming up is that I am going to send Nik home for my daughter’s graduation and I need to learn to (and build stamina for) taking care of myself BY myself again without someone here to wait on my beck and call. So, back to doing my own cooking, cleaning, laundry, dog care, etc. I feel like I need to do that for just me before I can go home and get myself out of the ‘sick person’ rut and become a functioning member of society again. I need a bit of time to just resettle and digest everything.

Family and friends in Omaha and Council Bluffs have been super nice and helpful here. I feel at home here in a lot of ways because people are so practical and down to earth and there is not too much woo woo here like I can get a little much of on the west coast. These are my people in many ways. I guess you can take a girl out of the Midwest, but can’t take the Midwest out of the girl.

But, I can’t stay here. The car culture and lack of transit is too crazy for me. A guy (sighted guy) in my apartment building here just got hit by a car in an intersection I traverse nearly daily and I was not a bit surprised. If I stay here too long, it will be me next. Omaha-ans don’t really believe that pedestrians exist. Or that red means stop. It’s not a good combo.

Okay, so I wrote a post! Let’s see if I can publish it? More later if all goes well.

What’s the Matter with Guide Dogs? (Chapter 5: Salvaging Mia)

See also:
What’s the Matter with Guide Dogs Chapter 1: What Happened at the Airport?
What’s the Matter with Guide Dogs? Chapter 2: Marra and Jats-The Gold Standard
What’s the Matter with Guide Dogs? Chapter 3: The Strange Story of Barley
What’s the Matter with Guide Dogs? Chapter 4: Old School and New School Diverge with Marra and Sully

It’s really too early to write this chapter, but I also have the advantage of memories of training very fresh in my mind. I had to take a bit of a break because I was really devastated by the sudden and unexpected death of Marra a few weeks ago. She died in her sleep of what the vet thinks was hemangiosarcoma, a spleen tumor that suddenly ruptures and caused internal bleeding. It was a real blow to me and our family. She was happy and well up to that night and we expected her to be around for at least a couple more years with us. She was happy to play with the new dogs, Cobey and Mia that we had just gotten in October from Guiding Eyes for the Blind.

My latest Guide Dog ID, with a picture of Mia and I. My kid, Avery thinks it’s funny that this picture has a black dog hair on it. Such is life with guide dogs.

So it’s a little hard to write about guide dogs still, because of grieving Marra but also because this training was by far the toughest and most confusing I had ever experienced. And it’s a little unfair to the new dogs as I don’t think we’ve seen their full potential yet. I also want to stress that I am going to explain to the best of my memory what my training experience was like at Guiding Eyes as honestly as I can, but I do not understand the why’s of what occurred. I can only speculate. I also had interactions mainly with one trainer, and I don’t want to villianize any one particular person. As I’ve said before, I think the problems with guide dogs as of late are systemic, not limited to one trainer or school. But since I am just a student, it manifests itself to me mainly through one trainer, so that is what I will largely write about. But I don’t think it’s necessarily that she herself is at fault. And I have no desire to get her or anyone else in trouble. I more want to open a discussion and open transparency and sort of a self-awareness among the industry that seems lacking right now.

I also want to say that I love Mia, like a lot. I love my partner’s dog, too. I have seen so much growth and change in Mia since I brought her home and worked with her for the last 6 or so weeks. She is a fast learner who likes to go out and guide. She has lots of potential and I remain hopeful.

Why we chose Guiding Eyes

This is a bit of a sordid tale that looking back, seems maybe a little misguided. But I’ll tell you how it came about. It started in 2018, when my husband retired Sully. It seemed at the time, and based on my experiences with watching the other trainers in 2014 at GDF, that after the mass firing at GDB, their trainers had taken over the world. Their low expectations seemed to have permeated GDF, even though I lucked out and got my old school trainer, Mike. We had heard that the only place you could still get a well trained dog was at the one and only original school, The Seeing Eye (TSE) in Morristown New Jersey. So Nik applied there. The downside of TSE is that they still require you to go to 26 days of training, have no home training, and also give almost no notice to when you will go to class. As our small business was only four years old, this was a real issue for us in 2018 more than it is today, when we have additional support staff and trainers to cover for us that we didn’t have then. So, we thought we would work it out, but it kept being put off and put off by TSE. After a year, Nik started reading about GEB. He liked that they were working with new types of harnesses and had a running guides program. He liked that they did 2 week training, home training and tha the CEO was blind. I liked that they had special programs for Deafblind folks and people with additional disabilities. TSE still says that Deafblind people aren’t qualified to have a guide dog on their website, even though I know of at least one person who is deaf blind that graduated from there. So, Nik applied to GEB in 2019.

Then the pandemic happened. All operations stopped at all the schools, and then were greatly curtailed for nearly 3 years. Then there was a backlog of applicants. Then, Sully died. When he died, Marra was almost 10 years old. I thought she might have another year left to guide. It was so hard watching Sully grow old and die, and then Nik would have a young dog and I would have an old dog and we’d go through it all again. I also was on the kidney transplant list, and it would be better for me to get a dog sooner rather than later, since my future was so unpredictable. So we thought, what if I apply now, and Nik can wait a couple more months for my application to go through and then we would go at about the same time, so that our dogs were in the same stage of life? Wouldn’t that be easier than having a slow older dog and an energetic young dog all the time and being out of sync always?

This is Mia with her “unifier harness” which was developed by the CEO of GEB for runners. I like it because it has a lot of tactile feedback and it doesn’t hurt an ongoing wound I have on my leg caused by the metal piece of a traditional harness smacking it all the time.

So I emailed GDF and GEB and explained my situation. GDF never got back to me. GEB got back to me promptly. So, I just applied there. At first they seemed amenable to my plan of Nik waits a little bit longer and I wait a little bit shorter and we both get dogs about the same time. But in the end. I waited about a year, which is the average amount of time, and he waited that same year with me. Weirdly, his dog’s trainer said he picked Nik out for Cobey in around the end of August, but he didn’t go get him until October. We also asked for home training, and a trainer was advocating that she could come out in the fall and train us both, but that didn’t go through. So poor Nik waited 5 years for a new dog after Sully. Of course some of that could not be helped with the pandemic, but we ended up going to training in the same class.

The Training

I went in to training just thinking that as a person who has gone to different schools, things would of course be a little different. I just thought I would do whatever they said for the two weeks, keep what made sense and revise the rest when I got home. Of course, I knew I would make mistakes, though. When you have said “halt” to a dog for 30 years and now you have to start saying “wait,” you know you will screw that up sometimes. When you’ve wrapped the leash around your wrist for 30 years and now they want you to use it in the right hand or tuck it under your left fingers, you know you will instinctively do it how you’ve always done it at least part of the time. My job with these trainers in this two weeks was to learn what the dog knows so I have the “key” to unlock their training they already know. This is exactly the discussion that my trainer Kat and I had. I told her that I would hold the leash like this (around my wrist) but I could do it the other way, too. But I’d probably forget sometimes. She was totally on board with this, and seemed open to seeing how I had done it before and telling me what the new dog would be used to. Perfect!

GEB lets you ‘try out’ a couple of dogs before you get your match the next day. It’s a little weird, but also kind of cool. The first dog I tried (and you don’t get to know their names) wiggled and squirmed all the way down the street. I mean, it’s a bit unfair to the dog. They don’t know you. But you have about 15 minutes to judge. The second dog I tried turned out to be Mia. When I held the harness, she was steady. it felt like a guide dog when the first dog felt like my pet miniature dachshunds of my childhood. When I brought Mia back to my room. She sat there, on the floor and barely moved. it was weird. All of my other past guides were thrilled and excited to meet me. She just sat there. Wow, this dog is super calm! I thought. She was also very small at only 53 pounds. That appealed to me because the airlines are putting restrictions on service dog weights and I’d been lying about Marra’s weight for the last few years because of it ( the cut off for some airlines is 65 pounds. Marra weighed about 70-75 pounds her entire life.) With this little dog, I could stop lying on the forms. I chose her.

I did not get her until the next day, and we were allowed to hang out with the dogs for an hour or so in our rooms before we did any training. This is when I saw the problem. She wasn’t calm and mature. She was scared. I hadn’t noticed the day before, but she was sitting so calmly not next to me, but next to a kennel in the room. I opened the door to the kennel and she immediately went inside. And she didn’t come out. Ever. unless food was involved. All dogs are different, of course, but this dog was damaged. Like a foster child who had been taken away from so many people that they were burnt out of building relationships anymore. I coaxed her out with treats and she would go outside with me or she would let me pet her for maybe 30 seconds or a minute. But then she would go back inside her kennel, and curl up in the back as far as she possibly could. That was our life for the first two weeks. If I shut the kennel door, she would crawl under my bed to where I couldn’t even reach her.

This is one of the first pictures we tried to take of Mia. She would stay for a few minutes if I held her, but then would go back to her kennel shown behind me. She was a bit of a sad dog.

Meanwhile next door, Cobey and Nik are having a love fest. Cobey was like the foster child that was in constant need of attention. He sat on Nik and gave him full body hugs with his paws around Nik’s neck. And if Nik went to the bathroom or left for a second, he immediately came to me and was stuck to me. Cobey was the one who could get Mia out of her kennel. She was very dog oriented and very interested in him. We let them play together from about the second day. and it was pretty violent. I mean, not that you worried that anyone was going to get hurt, but Mia would just not let Cobey hang out. She was constantly at him, pawing chasing and barking at him. I heard Mia bark more in the first three days than I ever heard any other of our guides bark in their whole life–combined. Now I know dogs do this, especially at first when they are getting to know each other, but Mia would not let up. It was constant when they were out together. So you had Mia in the kennel or under the bed, and Mia fighting with Cobey. That was what she did. And in between, we tried to get some training in.

Guiding Eyes has really no on campus facilities to train in. The first couple of days we trained on sidewalk less streets right around the campus. Streets with no sidewalk are necessary to deal with in life, but it’s not necessarily the best place to start out with a guide dog. My first real training with Mia was weird. Determined to learn everything about what this dog knew, I was surprised to find out that Kat didn’t know what this dog knew really. I would instinctively say commands in given situation and then stop myself and ask Kat, oh! Does she even know this command? Is it something different? And Kat would often be vague or say she didn’t know. At first, she said she didn’t know because I picked the dog she didn’t expect me to pick. But I thought she could easily find out in the next couple of days, but it seemed as if she was never really clear on what the dog knew or didn’t know. I would say, “Straight!” and she would say, “I don’t think the trainers use straight anymore.” Okay, so what do they use to redirect the dog or get them back on task? Does she know “leave it?” “Well, that is a command she may have heard. I don’t know.” she would say.

What? isn’t there consistency among trainers? There was a sort of glossary of commands that was given to us. Much of it was the same things I already knew. But it was extremely short. There weren’t that many commands. I’m used to my dogs knowing upwards of 40-60 commands and the glossary included maybe 10-12 or so? But I think Kat and I had a fundamental difference of opinion about something.

Kat said early on that she has determined that dogs don’t know English. They just base everything on your body language and routine. This is why they also teach hand signals.

I think this is 100% wrong. In all my dealings with guide dogs and pet dogs, I think that is wrong. It’s just wrong. And for blind folks, I think it also can be kind of a dangerous way to think.

Now, I get that dogs may not comprehend words in the way that we do, with the same sharpness of clarity for phonemes etc. I get why a dog might confuse the command chair and stair for example. So maybe you change one word to seat or the other word to step. I also have always been taught hand signals with dogs and know they can respond to these with out words. I even taught Mara some signs. I get that hand signals and body language help reinforce the behaviors you want them to perform. I’m not anthropomorphizing dogs, here. I get that they are different from humans with different strengths and motivations and perceive the world in a way I or no human can completely understand.

But they can understand enough speech to be guided by speech. And speech for blind people with guide dogs is important. Probably more important than just sighted pet owners. Many blind people are very auditory focused and much less proprioceptive. All blind people are different, but a lot of blind folks do better by using speech instead of hand signals and body language because our body language can be…well… a little different.

For example, one thing I am watching Nik and Cobey work out is that Cobey pays attention to Nik’s body language way more than his words, and sometimes Nik’s body language is not portraying a clear signal to Cobey, or not the signal that Nik means to convey. I have seen Nik and Cobey go up to curbs and then Nik will say “Left” which for our former dogs would constitute a 90 degree turn to the left and a realignment with traffic at that angle. If an intersection is not exactly 90 degrees, which many aren’t, the dog will still line himself up with the line that will cross the street straight from the traffic. If Nik turns left but only 45 degrees or not right in line with the cross walk on a weird street, our old guide dogs would lead him to the correct line of traffic. The command “left” is complex and means something to the dog that is separate from exactly where Nik’s body is facing. Nik turning to the left might be a back up clue that reinforces the command, but it isn’t THE COMMAND. But Cobey is looking at Nik’s body, more than he is listening or processing the command “left.” If Nik turns 45 degrees to the left, so does Cobey. If Nik would then say “forward,” Cobey takes Nik right out at 45 degrees, rather than aligning to the correct line of pedestrian travel in the intersection. I’m sure when the sighted trainers use a hand signal and their bodies to indicate “left,” they are doing so in a perfectly orderly left fashion. and the dog complies to that. Then the dog goes to a blind person and their hand signal and body are only sorta kinda left. And the dog follows. This is why training the dog solely on body and hand language is ill conceived for the blind population. Of course, some blind people are not going to have a problem with this, but more than a small amount are. And sometimes you have things in your hands and can’t do a hand signal or you unconsciously turn your body a way you didn’t mean. Verbal commands are clear and concise and intentional. And dogs can totally understand what “left” verbally means. This is an example of trainers not seeming to understand what blind people deal with in real life and only train the dog under very controlled conditions that are not realistic in the real world.

Mia and I with Nik and Cobey during training. We are waiting at an intersection here. Nik has had to work with Cobey a lot on lining up at curbs correctly and turning at curbs correctly. Once he is set up, he’s fine, but he doesn’t naturally line up at the curb like our past dogs might have.

There was also an issue with the dogs not guiding on leash. Our GDF dogs always guided on leash. This is not something that you would do for a long outdoor walk. Guiding on leash is for just taking your dog out to pee or just a quick walk down a hallway in a strange building. Nik and I struggled with the fact that the dogs don’t guide on leash. We actually knew this going in, so we are somewhat responsible for this ourselves. But when we say these dogs don’t guide, they REALLY don’t guide. In my past trainings, the first day was just going around the building on leash with the dog guiding you. You would use all the same commands as when they were in harness. You hold the leash with almost no slack, and they guide you. It’s not as comfortable for the dog and not as clear to follow the dog with just leash, but for short distances, it works well.

But the first couple of days getting around were a struggle. Its not that we didn’t know the lay of the land in the building, but its stuff like, there would be a janitors bucket out, or another dog down the hall and your dog is pulling with all their might dragging you out of your orientation as to where you are or they are busy sniffing the floor somewhere or dragging you into an interesting room. We were supposed to “heal” the dogs in these situations. In GDF parlance, “heal” is a position. The dog goes to your left side, faces forward, and waits for a command. At GEB, “heal” was more like how obedience classes at Pet Smart teach people to heal their pets. The dog should walk along side you but not guide you. Kat said they work hard to get the dogs to heal, but why? When does a blind person ever need their dog to heal, really? If you are sighted, you can walk forward with confidence and the dog can follow you. If you are blind, you are not going to walk in confidence if a dog doesn’t guide and you don’t have a cane. I was under the impression that we were not supposed to use our canes with the dogs healing as I had never been taught this before. It was unnecessary if the dog guides on leash. Even Barley guided on leash, even though I don’t think the was specifically taught that. Sure, sometimes you would go sighted guide or use a cane while holding your dog’s leash, but they would just adjust. So, I started feeling unsafe walking around the building with Mia “healing” because she was a nut. I asked Kat about it and she said, “That is why I told you that you can use your cane.” She absolutely did not tell me that. She did not tell Nik that. It felt like a gaslight. I ended up consoling myself by thinking, “well, she didn’t tell me NOT to use my cane. And maybe she really did think she told us that. She has classes every month.” But it was confusing. When I started using my cane indoors while walking Mia in heal position, it helped a bit, but it was still hard.

One thing that was hard is that when she would be goofy in “heal,” I would use commands, the only ones I knew, to redirect her. But I was told these were “harness” commands and I couldn’t use them when she was not in harness. Wait, wait, wait..so they don’t know English, yet they have a whole set of separate languages in harness and out of harness? Ooookaaaaay. But then, I said, what are the redirect words? We don’t know if she knows “leave it” so that can’t be it? I tried using “hupup” (which was previously to me a word used to speed a dog up, but here it seems to be a redirect word in harness only.) I can’t use that when she isn’t in harness. So literally, I’m standing here in the hallway and my dog is pulling my arm off, scrounging the ground right now. What should I do?”

“Use a leash correction.”

Really? Really? That’s it? That’s all you’ve got? I’m going around wearing a food pouch because you all have convinced me this is the humane, positive way to control a dog because leash corrections are so old fashioned and cruel, but there are no commands to redirect a squirmy dog except a leash correction? I’m so confused by this.

I did not understand Kat. Maybe it was different communication styles, maybe it was just that we didn’t quite jive. I did not dislike her. I feel like in a different situation, we could have gone out for coffee and had a great conversation. I just did not understand anything she said because she either seemed to not know or answer my questions in ways that were not definitive. Does this dog know ____? It seems like a yes/no question. Or at worst, an I don’t know question. But the answers I often got were, “maybe in some circumstances she knows this or maybe has heard it but she may not have been trained with it or that is not what this trainer does or you can use that if that is comfortable for you or what would you do?” I never knew what I was supposed to be doing with this dog. It seemed like I was training the dog from scratch because often, Kat would give me nothing in a given situation so I would just revert back to what I knew with past dogs. No wonder my dog was scared and hid in the kennel all the time.

Occasionally, I would work with other trainers, and I would see part of the problem. None of them used the same methods or commands. I was in grand central station and another trainer was literally feeding me the commands to tell me dog because it was so busy and loud. She said, “give her a ‘right right’ here.” I’d never heard that term, what does it mean? So there is right, over right, to the right, and right right. For my past dogs, right was a sharp immediate right turn. Over right was a gradual drift to the right. Find right would be to find the next opportunity where we can safely turn right. Right, right? That was a new one to me. Which is to be used where? What does this dog actually KNOW? No one really could tell me. She asked me to get out my clicker. I was never given a clicker. I heard them on campus sometimes, so I know that some trainers seemed to use them, but my dog did not seem to respond to them. I mean, if one trainer stayed with the same dog all the way through, letting the trainers use different commands might have been ok. But in this case, Mia seemed to have had 4 or so trainers. (More on that later.)

Nik and I were both shocked at what the dogs did not know. It felt a lot like when I was at GDB with Barley, and the dogs were so young and only had about 40 hours of training and only knew the basics. Mia’s basic obedience was pretty good, most especially when food was involved. She was not into me. She could care less about me. She would work for food. But there were big gaps in her knowledge and behavior that I hadn’t seen since I went to GDB with Barley. The dogs were not taught things like to distinguish between a curb (or single step) and a flight of steps. With our old dogs, on a curb the dog would stop and you would say forward and the dog would step off and you would follow. If it was a flight of stairs, the dog would stop, you would say forward and the dog would not go. Then you would put one foot down indicating that you understood it was a flight of stairs, then say forward again and the dog would go. These dogs were not taught that. The trainers didn’t seem to understand why this was important. We were just supposed to never be in a situation where we wouldn’t know the difference. Sure you can use context cues here. But have they never gone to say, a botanical gardens with a lot of irregularly placed steps? Have they never been in a building where all the sudden there are 4 steps in the middle of a hallway? These situations really happen. And your dog needs some way to communicate with you about that. They acted like they never thought of that before.

MIa in her harness by the train tracks being cute and a little “extra” as she is wont to be.

The dogs also had very little targeting knowledge. Targeting is one of the most useful tools guide dogs do. Some of it has to be taught after you go home because your environment is going to be different than where they came from. But some of it can be taught and generalized. The dogs could target doors. That’s it. That’s helpful, but not really enough to be useful. Marra could target elevators (the buttons themselves), garbage cans, chairs to sit in, counters, doors, upstairs, downstairs, ramps…am I forgetting anything? When I got home, I quickly taught her a few more things like bus stops, specific seats on the train, toll card readers, etc. Mia came home knowing almost none of this. And again, like at GDB, they were certain that these dogs could be taught specific targets, but not to generalize, and needed several step backchaining to learn a target.

And…this is a big one… they don’t seem to know intelligent disobedience.

They will say they do, because it is so fundamental to guide dog lore. But I have seen no evidence of it. Remember when Doug used to have us tell the dogs forward at an intersection when cars were coming right in front of us and they didn’t go? Yeah, no. these dogs fail at that. Now, they did do traffic checks successfully. This is when the trainers drive their cars right in front of you while you cross the street and the dog stops suddenly, avoiding the car. The dogs can do that. But when I asked a trainer how they teach intelligent disobedience, she really didn’t have an answer. She talked about how they would get a piece of plywood and push it at the dog so it would back up. Ok, so they can back up and stop when something is coming right at them. That is not the same as intelligent disobedience, which is when the handler gives a direct command and the dog refuses to follow it because it is too dangerous. One of the issues I had and still have with Mia is that she stops at curbs but then immediately pulls to go, even when there is traffic coming right at her. I have to physically hold her back. And then here is a Cobey story that demostrates a few of the issues we struggled with there.

Similar to other schools, GEB has the trainers right by your side, giving you the blow by blow visual information up ahead before you can even see how the dog will respond to it. Nik was really put off by this. So was I, but I had been called into the principal’s office two or three times by that point and so I had just given up on anything being productive coming out of this training. I was trying to lay low and bide my time until I got out and could start really working with Mia. On the last day, we had an afternoon where we could choose what we wanted to work on. Nik came to me and wanted us to ask to just go to a coffee shop on our own, and just see if we could do the whole thing by ourselves. He really needed to do that for his own confidence, because you can’t tell anything when the trainers are on top of you like that. You can’t tell what you are doing and what the dog is doing or if every obstacle and problem is just being secretly snowplowed away from in front of you. So I agreed, and we went to one of the GEB lounge areas where a coffee shop was just about 2 blocks away.

We asked simply for good blind people directions. We knew the trainers were going to follow us, but we thought they would stay at least half a block back. These were not our usual trainers, but there were two of them, and they seemed surprised at what we were asking. They definitely did not see the importance of it to us. They kind of had this attitude like “Okay, we will humor you.” We asked for directions and the directions they ended up giving us were very sighted people directions. Sighted people give directions as if they are driving somewhere and they can just see the signs and turn in somewhere. Blind people directions are much more detailed and based on tactile and other cues. Here is what they said about this coffee shop:

“Go left at the sidewalk and go to the intersection. Cross it both ways. Walk about half a block down and there is a Starbucks.”

“What can you tell us about the Starbucks? is it a separate building? is there a line of storefronts, is it a drive thru? Does the door face the street?:

“Um, yes, there is a line of buildings, but there is a driveway or two before you get there.”

Ok, so I interpret this like, we cross the intersection and then there are a bunch of storefronts close up to the sidewalk. Maybe there is a driveway or two interrupting the row of storefronts. The door faces the street and is not too far away from the street because it is a line of storefronts. So, we go until we smell the coffee, then find the door. We may pass a driveway or two on the way, but they are inconsequential.

We cross both streets no problem. We walk along and there are no storefronts! It’s like open and vacant. They are not half a block back, they are right behind us. They say nothing, we say nothing. I walk along and I smell coffee. I keep walking and the coffee smell goes away. I turn around. I tell Nik I smelled coffee but now it’s dissipating. Nik goes back and goes down a driveway. He comes back and says it is just a parking lot. We look it up on blind square while these people are RIGHT THERE staring at us creepily. He can’t find it on blind square. I walk a bit and listen. I hear people talking casually, like they are at tables. I hear someone walk by and I smell coffee. I know we are super near. With a cane, I would shoreline until I found an opening. With a working guide dog, I would tell her to find left so she would go to the nearby opening then tell her to find a door. My dog can’t do either of things. I was never taught that she could. But I can tell there is tables and hear people at them. They are set back. I reach out my hand, there is like a hedge or bushes or something. No one said anything about a set back building, parking lots or bushes. I tell Mia to go left while I feel the bushes with my spidey sense. Another person comes out and I tell Mia to turn in where she came out. I tell Mia to find the door, and she does a good job with that. I tell Nik where I am. We go in and stop immediately by a table or wall. Nik asks a person where we should go order and they tell us to go right, then left, which we do. Its a bit loud inside and we try to teach our dogs the counter but it is too chaotic and I am feeling really self conscious. We order coffee and that is uneventful. We find the out door with no issues. I wanted to sit at the tables outside but three or four attempt and our dogs fail this. Mia takes me to a sort of retaining wall and I feel like that is good enough and we have our coffee.

Just a couple of days before Marra died, we all went on a little hike in a nature preserve. I was double fisting Mia all the way as Marra was with my son guiding perfectly as per usual. This was a happy day, but Mia was a handful. She did better when she followed behind Marra.

Nik asks me where our trainers are but I don’t know. But I feel their presence. I thought they might come and talk to us. Nik decides he is going to text Kat and see if he can hear the ping, and I realize he doesn’t even know that Kat didn’t come with us, and I tell him but I don’t even know who it was that came with us. I don’t know their names. We laugh about this. But then we decide to head back.

Here is where we make a mistake. Upon crossing the street again, Nik screwed up. But so did I. Usually, on an unfamiliar intersection, I would stand there in silence and listen to it a few times and figure out when the left turns go, whether they are right turning on red, etc. But this time I don’t because I am so insecure about these people following us and my dog wants to go and so I am physically holding her back. I said something to Nik, I don’t even remember what. I think it was something about how I need to figure out this intersection. And Nik and Cobey just go…right out into traffic with a car coming. He thought I said I was going but I was saying I was not understanding it yet. I yelled at him and he came back. No one was hurt. But there was literally no intelligent disobedience from either dog. This was our mistake, and we take responsibility for not just shaking off our insecurities and just taking our own time to figure out the intersection. But it brought to light a bigger problem.

When we got back, the trainer got on Nik’s ass about the intersection. Which, fair enough. But I was thinking, “You can say we screwed up that intersection and that’s fine. But are you not going to EVEN ACKNOWLEDGE that Cobey completely screwed up that intersection? Or that all Mia wanted to do was to pull into traffic? Are we not even going to talk about that these dogs don’t know intelligent disobedience? It’s just all going to be our fault?” Also she said that in a few MONTHS, maybe Mia could find chairs. This made me depressed. My other dogs could target in just a few lessons. Days or weeks, not months.

Also, here is the directions to that Starbuck’s, from t he corner after the intersection, the blind people way.

After crossing the street both ways, you will travel past a driveway, a building set back from the street, and another driveway. There are a group of hedges lining the sidewalk where Starbucks is. It is its own separate building with a small seating/patio area in between the hedges and the building. There is a flagstone path in the middle in a break from the hedges. Turn left down that path and the door is about 30 feet ahead, up a step or two.

But I digress.

The attitudes at the guide dog schools is that they are always right and if there is a problem, you are the cause. And sometimes you are. The dogs don’t know you, you are unfamiliar to them and your voice and body language is different. Of course there is a learning curve that is not always going to go smoothly at first. It is also hard to start over with a new dog, and it can be frustrating. but I am talking about if you have any criticism or feedback whatsoever about the dog’s training, the staff turns it onto you.

I’ll admit, there were a couple of times I made sort of a snotty comment. Or kind of a comment to myself that was not very tactful. It was mostly out of surprise and confusion. For example, Mia had diarrhea the entire time I was there and no one seemed too concerned. She also pooped by walking in a circle, dripping little drips of poo 360 degrees around me. It was almost impossible to pick up. For a blind person, you want your dog to poop solid and in one place. It can be hard to impossible to find poop you can’t see when your dog is a moving target. No one seemed to be at all concerned that my dog was doing this. So I said something. I thought she might have worms or something. I was instead told that I have to hold on to her collar while she poops so she won’t move. I said, sort of under my breath, “Oh. Now I have to teach her how to poop.” I had spent the previous night literally making a spreadsheet of all the behaviors I would like her to know and how many she did know and how many I would have to go home and teach her. It was a little overwhelming. So that is where that comment came from.

And that is how I kept getting sent to the principal’s office. And poor Nik, who was kind to everyone, got sent with me, totally guilt by association. And I did get the threat: “If you don’t like the dog we can just quit right now, no harm done. You can go home.” Like I’m five, and if I can’t play nice then they are taking their ball and going home.

Ok, I said a comment or two like the one above. But mostly I was nice and polite and did every single thing I was told. After the first principal’s office visit I had a FEAR that I would screw it up for Nik who already loved Cobey. I could not do that to him after he had already gone five years. But for the most part, I asked questions and was confused. Legit confused as to what was going on. Why don’t you know what commands this dog knows? Why don’t you teach them this? Why don’t you have higher expectations of the dogs and blind people? What should I do in this situation? I’m confused because you aren’t giving me any direction. What can I do about this?

The problem I think is that guide dog schools are praised SO MUCH about their wonderful work by everyone, including blind people who. have no power and always are at risk that if we don’t act like everything is wonderful that our dogs will get taken from us, that we pile on the acolaides as well. Sometimes with good cause and sincerely, sometimes, to stay in the good graces of the schools. So if you question the slightest thing, they are so taken aback that they think you are being highly critical of them when you just want it to work. You are depending on these dog for your every safe movement. For your self image as a blind person. For the good graces of others. And you are just supposed to smile and never say anything? These are my legit questions and concerns in an attempt to get a working guide dog that won’t put me in physical danger or further get me discriminated against. Don’t I have a right to have high standards and have some accountability?

In the last few days of training, I started piecing together Mia’s story. And it started to really piss me off. She was raised by a family in North Carolina, and from what I can tell, that went fine. Then, she went to the breading program, then she went to the running program, then she went to traditional training, then she changed trainers and was just sort of shelved and put into maintenance training for months. She had been in the kennels for 10 months. She had made approximately 7 transitions with different programs, trainers, etc. She was 2 years, 2 months old and for the past. year, all she had known was the kennel and several different trainers. She had done nothing and learned nothing new since at least June, except for regular maintenance walks. I was pissed for her.

There is this theory that labs don’t care who they are with as long as someone feeds them. I think labs are resilient in this way, but I also think they do get attached, it does matter when they are constantly separated from people over and over again and they do. have feelings. I know I can’t possibly know how it is to be her, but I do see now how it is that she is stuck in the kennel, afraid and ambivalent to socialize at all with the people around her except if they offer food. Food is probably the one constant she has had all of her life. No wonder she acts like a damaged foster child. In dog terms, that is pretty much what she is.

On one of the final days there, when I had pulled together what I could of her story, I got a little freaked out. This is the oldest dog I’ve ever gotten, who knows the least, who has the most behavioral problems, and who will take the most work, and who doesn’t even give a shit about me if I don’t have the food pouch with me. By the time I fix her, she will be ready for retirement! I am a middle aged woman with kidney disease. What the hell am I even doing?

I was sitting on the cold linoleum floor of my dorm room right in front of Mia’s kennel. She was curled up in the back as usual. She had peed on my floor earlier. I reached in to pet her, which she didn’t seem to mind, but also could take or leave. I was practically half way in the kennel by now, and I rested my head on the mat beside her. What would happen to her if I didn’t take her home? She would have more kennel time? Would she go back to her puppy walkers? Had she been with another blind student and be rejected before (around June as I kind of suspected?) Would they hold her over for another go? Would she be more screwed up? More damaged?

Maybe it would be better for her to be given back to her puppy raisers. They already had one rejected guide dog. They would take her, I think. But what if they just kept her in the kennels even longer and tried again? I knew they would never tell me what would happen to her. I didn’t want to go through another Barley. That was so hard.

At home in the first couple of weeks, Mia took over and camped out in Marra’s kennel until she slowly started venturing out and socializing with us more and more.

One thing I thought of was that I am now able (unlike many other folks) to work with her at home. I don’t have to go right back to a 9 to 5 job. My schedule is flexible. I had Marra, who could maybe do some modeling (which she did while she was with us.) I could never. have taken her home if I had to go right back to a traditional job or had small children. If she went to someone else, they might not be able to deal with her and her attachment issues would only be worse. And she did like to guide. She could learn. I had seen glimpses of it. I just couldn’t put her back in the kennels. I had to try to salvage Mia.

The Facilities

Again, I don’t need much at guide dog schools. It doesn’t need to be a resort. And although GEB’s facilities were adequate and safe, they were the most run down of any of the schools I had been to previously. To the point were Nik. and I were like, are they running out of money? Is there a problem? But the dorm itself wasn’t the biggest issue about the facilities that I found problematic.

GEB has no on campus training capacity. There is the road with no sidewalk, but that isn’t really realistic for much. (And they don’t teach the dogs to stop when you turn the corners on sidewalk less roads, so what could you even do there? It’s another thing on my list for Mia to learn.) But they only seem to use the nearest town a bit and it’s not very dynamic. We went to several other towns in the van. White Plains, Mt. Isco, etc. You spend a LOT of time in the van just driving to these places, just to find regular sidewalks. This is a negative of this training center. Too much time in the van driving, not enough time training.

At GDF, we got about 4 walks a day, some were fairly long. At GEB, we got 2 for maybe 20 minutes. it was the least amount of actual training time I had ever had. The ratio was 2:1, but that didn’t help. It was because of the driving time.

…and the wait time while the trainers had to do some type of data documentation. I’m all for accountability and data collection, but when the data collection actually changes and harms the training because of the time it takes up, it is no longer meaningful data. The amount of training, as well as the fact that the trainers were inconsistent and didn’t know the dogs and what they do well made this the weakest guide dog training I had ever had.

Graduation

This graduation still did not beat the GDB graduation for shear objectification and condescension, but it was not my favorite. It was a low key ceremony with an audience and also broadcasted on zoom and Youtube. It wasn’t terrible, but was not my favorite experience. Just like at GDB though, the dogs were hard to control and one poor dog was whining and crying a lot, but we all were supposed to act like nothing was wrong. It’s just like, why put the dogs through this? At a reception, that dog could have been right next to his puppy walkers and had a nice conversation.

The other thing that was hard for me is that every once in a while, you’d show up tired and looking dumpy just wanting to get through a meal and there would be some big wig donors that would just appear without warning and sit down next to you and start talking to you. I don’t mind meeting new people and I understand the part blind people need to play with guide dog donors, but just some warning or a request would be nice. It is hard to socialize when you are Deaf and in a loud room with a lot going on. So often, you could barely eat your meal because of so many guests and interruptions.

Bringing Mia Home

I already talked about the first few hours of bringing Mia home. It was rough going for awhile, but it has slowly gotten better. I’m only about 7 weeks out, so who’s to say how far we will go at this point, but I am hopeful. Here are a few highlights and lowlights from bringing her home.

  • The fun at first was that she peed in my house all the time, all while spending almost all the time hiding in Marra’s kennel. She chose Marra’s kennel even though she had her own. Luckily, Marra never uses it since Sully died and didn’t seem to care at all. It seemed like she couldn’t hold her pee for very long at ALL and she also did nothing to communicate to me that she needed to go. I solved this problem by taking her out about every two hours and slowly lengthening the time and keeping her on a strict schedule.
  • There was also a lot of barking and play fighting at first. Mia can be very aggressive, not to the point where she would hurt anyone, but she is very domineering to other dogs. We mostly solved this problem by time outs when it got too wacky, and letting her play fight outside but not inside. It was mostly between her and Cobey. Marra mostly stayed out of it and came over and sat by me.
  • The most fun and biggest change is that she slowly did come out of the kennel and has become really affectionate and her personality is coming through now. I think there is still a bit of work to be done, but over the weeks, she came out more and more and interacted with us more and more. She now is almost only in her kennel at night time, which I am having her do because she will still have the occasional pee accident when I don’t. But she is a lot of fun now, very silly and sweet, and seems to enjoy being near me and other people in the family. She is still nervous when a stranger (like a waitress or a nurse) comes near her and will not sit still for it. She hovers behind me. This has gotten a bit better in restaurants as she has learned that the servers don’t really do anything to her. But we are still working on medical settings. She doesn’t like it when the people approach me/her.
  • We were doing triple dog obedience every day when Marra was here and she had fun with that. Mia is the best of the three dogs on obedience. Marra was second best but a bit rusty. Cobey has had food issues and gets too crazy and aggressive around food to the point of distraction. Mia is labradorish around food so we use that to our advantage. Now that Marra is gone, we still do obedience, but I have to say it is not as fun as three dogs.
  • As far as guiding though, the first few weeks were spent teaching her how to avoid obstacles. This is something I never thought I would have to do. When a guide dog changes handlers, especially if there is large difference in size between the trainer and the new handler, this is to be expected. But mostly that is just that the dog needs to learn your size and you might brush up against things. With Mia, it was like she full-fledged did not understand obstacles. There is this street light pole in the middle of a sidewalk I walk on all the time. And she runs me into it often. The first few days I took her out to work on targeting, but I had to back track and work on avoiding obstacles. It was crazy. It is getting better, but still surprisingly bad some days.
  • Mia is good at finding curbs, but not so good at walking straight lines. No guide dog is perfect. But with my past dogs, they would walk straight down the sidewalk and every so often might get distracted by a smell. With Mia it is a constant thing, all the time. Instead of a straight line with an occasional head turn or sniff, it is constant sniffing and walking in a goofy fashion. This has improved somewhat but it is still a constant thing. One thing is that she didn’t come knowing very many “redirect’ commands that I was taught. I was taught hopup, but that was it. No leave it, no straight, no find the sidewalk, no find the curb (there is to the curb, but I was told you can only use that if you are within about 10 feet from the curb. I would use it as a refocus thing with my GDF dogs to give them focus.) You can do leash corrections, but it is so much more effective to keep them to what you want them to do as a focus rather than just jerking them away from what you don’t want them to do. We are working on distractions with the words I have used in the past. She is getting the hang of it some days.
  • We are working on managing her speed/pull. Guide dog schools do a lot to match your pace with a dog’s pace, but what is more valuable is a dog that can match different speeds in different contexts. I am confused as to how much work was done with them to have methods of speeding up or slowing down. I would normally say “hopup” to speed up and “steady” to slow down. But I could not determine from my work with Kat whether Mia was ever taught any sort of speed up/slow down words. She does not respond well to either of those words. Kat just wanted me to “pulse” her leash. But that doesn’t phase her much either. I have been experimenting with the traditional vs. unifly harness to seee which one gives me more control.
  • As Mia gets to bond with me more and actually like me a bit, she is getting less dependent on food. Now, we often go short trips without food. She can usually do ok going away from the house without food, but sometimes struggles on the way back home. She will literally stop guiding at all on the way home sometimes unless I get out the food rewards. I’m unsure if this is because she just wants to walk more or if her trainers might have taken her out on harness but brought her back in heel. So, getting off food rewards has been a work in progress but I have felt good about our progress. She is responding more and more to just my praise.
  • I have taught her how to target many things and she is a FAST learner. I am very excited about this. She first learned how to find the fare box at the train station in about 2 days. Then she generalized that to every other fare box. This was revolutionary to me. Yes, she can learn fast! Yes, she can generalize! No, I don’t have to back chain and take months to teach her to target. This has now worked (two or three lessons with food. So say I do it 5 or 6 times over 2 or 3 days, using a find and reward “good button” method instead of back chaining). She has learned the pedestrian signals, she has learned the Portland bus stop signs, she can get some trash cans (especially the ones made for dog poo.) This gives me a lot of hope about her potential.
  • What is interesting to me about this is that the brand new stuff that I know she wasn’t taught before and I taught her from scratch (like pedestrian signals) she learned super quickly. But the stuff that I think she may have learned before (like avoiding obstacles and finding a chair) she is much less consistent on and very messy with. I’m not sure why this would be. I know that I am doing it differently that she probably was taught, and that must be confusing for her. But since I really wasn’t taught too much of what she knows and I’m mostly guessing, there is not too much I can do about it.
  • She has decreased her barking quite a lot. And she is not so much of a bully any more with Cobey. She is pretty sweet and chill at home now.
  • Her decorum, or manners are better now that I brought her home than they were at the school. Part of this is maybe to be expected. She might be less stressed now. Part of it is that I kind of have developed a no tolerance for bullshit policy with her, and I think they tolerated a lot of nutty dog stuff there without really having too many expectations for good behavior, or at least as good as I’ve been used to. So this has been a relief that she does sit on the bus with good manners. But it took me being kind of hard ass about it to get her there.
Obedience in the living room. We also had daily lunch obedience in our (fenced) front yard. Everyone enjoyed Front Yard obedience.

So, things are slowly progressing. But make no mistake, this is not usual or how it is supposed tone. She is the oldest dog I’ve gotten with the least knowledge of guiding and the most problematic behaviors from the get-go. I can only do this because I am in the position right now to not have too many demands put upon me as I sit around and wait for my transplant. If I had young children, a very busy life, an office job to go back to, I really couldn’t have taken her home to work with her. With Mara and Marra, I did not have to do even 1/20th of this work when I got home. There was no potty problems, obstacle problems, barking problems, food issues, etc. With Mara, I had to wait out her barfing stage, and with Marra, she chewed a few things up when I brought her home. There was a bit of work with customizing their targeting and that was it. I could hit the ground running and go on with my life. Barley was more work, but she could basically guide without running me into things. I didn’t fear for my safety with her. With Mia at this stage, I am very careful with where I go. I cannot yet take her places where I am “freestyling” it. I always need to have a cane to back up. And I am only taking her on 1-2 walks a day to familiar places at this stage. It has been and will continue to be a lot of work.

And yes, part of me really resents that I have been put upon to do this as if it’s nothing and as if it’s all my fault or that my expectations are too high. But I sat there, half in the kennel, trying to find whether my dog had any joy for life left in her, and I chose to take her home and work with her. I couldn’t face putting her back in the kennels for yet another person to leave her and transition to someone else. She does, it turns out, have a lot of joy left in her.

Mia’s Timeline (as best as I can surmise):

  • Born August 11, 2021
  • Puppy raisers from about October, 2021 to January 2023 (a note: I did ask if something in the pandemic messed up her timeline and made her have to wait at different intervals for extra long, or if the pandemic had affected the quality of her time as not being able to go so many places or. have less opportunities. I was assured that it had not affected her training. It was only the 2020 dogs who were affected. This would have been an excuse I would have understood, but they said no, the pandemic did not affect her, so?)
  • Sometime in the breeding program (January 2023)
  • Running program trainer and first trainer (February 2023 to June 2023)
  • Maintenance trainer (June 2023 to September or October of 2023)
  • In class with me (October 16-29, 2023) Total kennel time 10 months, over twice as long as any other dog I’ve had, and with more trainer switches)
  • At home guiding (to present)Age 2 years, 3 months

Salvaging Each Other

If I could speculate on what happened with Mia, I would say the following issues contributed to her issues:

  • Too many transitions of people/trainers
  • Too long in the kennels, although I know she was not abused and was well cared for, kennel life is stressful for dogs. This, along with constantly detaching from a musical chairs of trainers seemed to affect Mia’s trust of humans and made her only understand food and trust dogs.
  • Along with that, her second half of training sounded like it was essentially, a bore. Nothing new was taught. She was taken out for some walks, but not too much happened. it was such a waste of time! Think of the things she could’ve been taught during that time to keep her interested in life. Nik noticed when we got the dogs that their paws were silky smooth, like they didn’t get out much at all. In just the few weeks we’ve had them, they already have started getting firmer, calloused paw pads. None of my other guide dogs had such smooth paws. Another issue was that when we got them, they really stank. I do believe GDF gave the dogs a bath before we got them, but these dogs had not been bathed. One of the first things we did when we got home was bathe them. They were so happy! I think there was some real under stimulation in the kennels.
  • No consistency among trainers or commands. It seems the dogs have different methods and experiences with trainers, and the final trainer (my trainer) did not really have any idea what they knew or didn’t know.
  • Low expectations about what the dogs can do. Maybe not all dogs can do what Mara and Mara and Jats and to an extent, Sully could do. But Mia is smart and can do a lot more than they set for her to do
  • Not a lot of quality assurance on how the dogs can perform with blind people who idon’thave a sighted fairy nearby telling them everything coming before hand. Throwing on sleep shades for an hour or two with another trainer walking with you on routes you and the dog already know is not real life. I don’t thing the trainers really know a lot about how it is to walk with these dogs as your main mobility device in real life situations. Also, blind people don’t just follow known, reapproved routes exclusively. There are different ways blind people have to travel and different discrimination we face when we have a dog that is not very well behaved. An appreciation for our reality would be nice.

If there is a grand plan in life, (and I’m not one that really believes in this but lets just say there is…) maybe Mia came to me like she did because Marra was going to die soon and suddenly, leaving me pretty devastated. Maybe I was supposed to help Mia because Mia was supposed to help me. Although there has been frustration, and sometimes I do have to give myself a pep talk to convince myself that I HAVE to take Mia out and not just use my cane because she needs the exposure and training, I have much enjoyed having Mia these past several weeks. We have much work to do, and I don’t know how far she can go as a guide dog, yet. But I think there is much potential there, and if we are supposed to salvage each other, then we’ve gotten a good start.

One way we got Mia enticed to come out of her kennel more

(For those who’ve made it this far in my little Guide Dog Minibook, I think I have one more short chapter left in me. I think I want to round up a list of recommendations for improvement.)