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.

Month: July 2024

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

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

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