Author: Lexie

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

See Also:

What’s the Matter with Guide Dogs Chapter 1: What Happened at the Airport?
What’s the Matter with Guide Dogs? Chapter 2: Marra and Jats-The Gold Standard
What’s the Matter with Guide Dogs? Chapter 3: The Strange Story of Barley

After my experience with Barley at Guide Dogs for the Blind in Boring, Oregon, I thought the issue was that particular school just wasn’t putting out high quality dogs. They were putting out too many, too young, too raw and too fast. So, schools are different. Huh. Okay, then let’s go back to where it all began at Guide Dog Foundation for the Blind. It didn’t happen right away, though. I had pushed to get Barley in the window that was 5 months before I gave birth, Nik moved down from Toronto, we started our immigration journey, and he got a job. When Barley was retired early, I lost my window. Although Nik was able to get Sully in 2011, I would not go back to get Marra until 2014. Our experiences the second time at GDF were a bit of a mixed bag. I got a really great dog with the best trainer I had ever had. Nik got Sully, and Sully is a complicated issue.

My third ID card for Marra. I’m getting older still….

But first, a disclaimer about training staff:

I’ve already mentioned some trainers in this series by first name, and now I am going to go deeper and mention a few more. I want to be clear that I do not think these trainers are bad people. They are not the villains in my story. They are mostly hard-working folks that put in long hours and don’t get paid especially well. You don’t major in guide dog training in college. There is no real accreditation that sets universal standards. Most trainers are animal lovers that work their way up from jobs like kennel worker and put in years of apprenticeships. They generally try their best and want to help. Doug, Sioux, Mike, Dan, Kat, and Other Dan have been generally nice to me and seem sincere in wanting to do good work. I do not have issues with them, personally. I mention them only as a means to illustrate my first-hand experiences. What I am trying to bring to light through my story is more of the overall trends of lowering quality in the guide dogs that are being produced today and how there is no real quality assurance at all that is consistent. And that this issue affects us blind handlers the most, although we have the least amount of power to say anything about how it affects our real lives.

Sweet, Sincere, and oh So Very Soft Sully:

I met Sully in my house late at night after Nik took the train home from the airport. Sully was a sweet, squirmy ball of excitement, but Nik was exhausted. His trip home from the airport was more akin to the one I talked about in Chapter 1 of this series, though not quite as bad as no excrement, barking, or blood made any appearance. Still, it was a tough go for them.

Nik and Sully after first meeting at the dorms of GDF.

Nik had asked for Doug to train a dog for him, but Doug was doing more field work now and so a compromise was reached. Nik went to the training center for two weeks and had Dan as a trainer. Doug was going to come to our city in a couple of days and finish off the training with the two of them for an additional week. This was a time period when all the schools were trying different models to reduce the 26-day training period to just a couple of weeks. Nik spent two weeks with Sully and Dan at the center, then Doug was to spend one week with us working with them at home.

Dan was a young, nice guy, very affable and good natured. Very proud to work as a guide dog trainer. Smelled horribly of cigarette smoke to the point where you always knew he was coming from 50 feet away. Dan’s dogs had a reputation of being very well behaved and had a high level of decorum indoors. Sully had impeccable manners. He always sat still, he never begged for food, barked, was incontinent, or chewed up anything. I noticed right off that he was of different stuff than the squirrelly, puppy-like GDB dogs. He would eventually become our business’s honorary receptionist and everyone loved visiting Sully.

Sully, however, was not a very good guide dog. I started noticing things early on. He didn’t get the gist of the job. He was trained with food rewards and was rarely, if ever corrected with a harsh leash correction. He always had this sort of expression of confusion the whole time. Once, we were in Vancouver, BC and he practically gave me a heart attack because he took Nik out on this road where cars had started coming around a corner (he had the right-of- way, but went at a steep angle that drew him into the other lane.) So, cars were coming around from a sort of blind corner, and Nik was trying to straighten Sully out, and Sully was so flustered that he pooped in the middle of the road. The cars were coming, they weren’t going to be able to see them until the last second, and Sully is in a squat with a confused look on his face. I pretty much stopped completely trusting Sully as a guide from that point on.

To be fair, Sully dealt with a lot of situations with aplomb. Here, Sully is guiding Nik who is driving a stroller behind him. Up ahead, the twins and their father race ahead. I remember this day, we all went to a restaurant after one of my kids was in a play. Sully was always polite and well behaved in restaurants, even when we had to figure out a wheelchair lift and had 3 kids running around.

Nik took a lot longer to get that Sully couldn’t guide well. Nik has excellent O&M skills with excellent echolocation. Nik can pretty much walk around without a dog or a cane without too much difficulty if he is familiar with the area. Once, our Christmas Day got snowed in, so my twin’s father, the wheelchair user, was stuck in his house. So we packed up our whole Christmas–all the presents and the food and everything–and walked down to his apartment a few blocks away. Nik was carrying so much stuff, and he walked right down the middle of the snowy street perfectly with no cane and no dog. (There were no cars and it was easier to walk in the street than the sidewalk, as it had been cleared a lot more.) Nik is too skilled for his own good sometimes.

When you have some vision like I do, the guide dog trainers stress that you need to trust and follow the dog even if you can see something coming at you. But when you are totally blind, they just figure they don’t need to worry about you “leading the dog” too much. But Nik did not have a good fix on when Sully was guiding him and when he was guiding Sully. So, even though I could tell that Nik was doing more work than Sully was, I do think it was genuinely hard for Nik to tell.

So, what was Sully’s problem and why did he make it through training? There are many theories.

  1. Sully was puppy raised by a very famous actress. He was sponsored by a big corporation. He was named after a celebrity (Sully Sullenberger, the pilot who famously landed the plane in the Hudson River) and had some ties to related organizations. There was a feeling that Sully couldn’t fail. He was a beautiful golden retriever. People said he looked regal. He was also super empathic and sweet. But he never struck you as being particularly smart. He might have been a great PTSD dog or therapy dog, but maybe he did not have the brains to be a guide dog. Did the pressure to have him succeed get in the way of quality standards? We wondered if Sully was “passed through” when he should have failed because of his famous and high level sponsors.
  2. Was Dan just not a good guide dog trainer? He did well with Sully on the behavior side of things, but not the guiding. In the years after I got Barley, guide dog schools started doing massive staff layoffs. Supposedly it was a cost cutting strategy. Get the older, more experienced trainers out before they rack up the higher salaries and pensions and get new, young trainers in. Guide Dog schools laid off entire training staffs and hired untrained young folks. They were eager and meant well, but they didn’t have the same level of mentorship and apprenticeship that was common in the past. Sully just didn’t get the level of training he needed.
  3. Doug ruined him unintentionally. Doug came from old school leash correction philosophy. If you remember, Doug was the one who would put his hand over mine and show me how hard to yank on the leash. In the few days that Doug came out after Nik had brought Sully home, they worked on street crossings while pulling a stroller. In an attempt to teach Sully to use the curb cuts, Doug did a strong leash correction with Sully. I wasn’t there, but Nik said Sully just dropped to the ground on the road and wouldn’t move. He was crushed in a way we had never seen a dog react to correction before. Since then, Sully seemed to start pulling way out into oncoming traffic in a wide arc instead of crossing the street straight. He took the lesson, but got it wrong. instead of aiming for the often 45 degree angled curb cuts, he thought he was supposed to arc way out into traffic. And he lost a bit of his spirit after that. From then on, Nik–well all of us–completely changed the way we crossed streets to accommodate Sully. We would always cross the street so that Sully was on the outside of Nik and the intersection, so he could not go into traffic. This might have meant we crossed an intersection three ways instead of just one to keep Sully on the outside from the intersection. All of the ways we walked with Sully were a strategy to accommodate his behaviors. When I got Marra, I often walked in front so he would just have to follow her. We walked on certain sides of the street and went certain routes all to accommodate him. Nik was guiding the guide dog.

Sully was a very soft dog. He was the product of the newer philosophy to make dogs easier to handle and to need less leash corrections. Doug came out to work with us again, and I think he saw how sensitive Sully was and how leash corrections did more harm. When talking about the old dogs vs. the new, Doug had said something to the effect that he told them (the breeding staff) that they were going to have just as many problems with the soft dogs than with the former, hardier dogs. He also told Nik that Nik was doing more for Sully than Sully was doing for him and that Sully had pretty much “washed out” which is an expression that trainers use when a dog has just decided “fuck this shit! I am not guiding anymore.”

Sully did enjoy walking with Nik, just not guiding. And Nik loved Sully as we all did and was in denial. It came to a head one day when we had all gone to a Dairy Queen. Nik had to leave early to catch a bus for work and the kids and I were finishing eating. Ten or 15 minutes after Nik left, I started noticing a bunch of people looking out a window and exclaiming things like “what is he doing? Is he blind? Is that a guide dog?” I love it when non-disabled people spend more time gawking than just asking someone if they need help. I quickly gathered up the kids and went outside. Sully and Nik were wandering aimlessly in the parking lot, completely disoriented. Parking lots are hard for blind people, and it was way too big of a job for a dog like Sully. Nik was pissed because he missed his bus, Sully was just sad and confused beyond any kind of usefulness. I put my foot down. I said, “you have to retire this dog. He can’t guide and you cannot get mad at him for not doing something he has demonstrated for years that he cannot do. If you are going to take him places, you must not use him as a guide, you must always have your cane.”

Nik let Sully come with him when Sully wanted to, but shortly after that, Sully started refusing to work sometimes. We would go to my kids’ father’s apartment every night to help him out on alternating days. Nik would call Sully and Sully would pretend to be sleeping and not move, even though his eyes were moving around and his ears perked up. It was hilarious. But he mostly still liked to go to work with Nik during the day. He would go in harness, but he really had very little guide “duties” that he was held to. He retired like this around 7, after about 5 years of trying to work with him and getting trainers out to work with him. He spent the rest of his life just hanging with the fam and going on low-stress walks. He died last year at the age of 13. I still miss him. He was such a sweet dog. But sometimes I think he missed his true calling in life. He should have been a PTSD dog for a veteran or something.

I agree with Doug. What I have observed with the issue of “soft dogs” is that they do not seem as smart as the hardier dogs like Mara and Jats. I don’t pretend to be any type of expert on breeding, so I honestly don’t know if this is a breeding issue or a training issue. But this is what I observe:

  1. Soft dogs don’t seem to roll with mistakes as well as the tougher dogs. This is very important, and I think there is an aspect of this that trainers don’t have enough experience to understand. When you are blind, you WILL make mistakes with your dog, especially in the beginning when you don’t know them so well. It is sometimes hard to tell whether your dog is screwing around or when they are trying to tell you that there is an obstacle in the way. As a blind person, you at times WILL scold your dog when they are being entirely correct in their behavior, and you will praise your dog when they are screwing around. Hopefully it doesn’t happen too often, but it will happen, especially in the beginning. If a dog can’t roll with that and bounce right back to doing what they were doing before, they lose their training and their will to work. A blind person needs a dog who doesn’t take things too personally, will bounce back quickly after a bit of confusion, and who blows you off when you make mistakes. Basically, a confidence in themselves and what they are doing that goes beyond “perform a trick, get a reward/avoid punishment.” The older dogs had this, the newer ones are less likely to. I recently had a conversation with a guide dog trainer about this and she was defending the newer dogs and saying the old dogs were kind of bullies. Well, maybe, but you NEED a confident dog that knows when to say “screw you, I’m right and you’re wrong.” The new dogs are too sensitive and try too hard to please you to do this. Sully was crushed–CRUSHED–any time he didn’t do the thing Nik wanted him to do, even if Nik was wrong. He got confused. He had trouble bouncing back. He did not have the confidence to think on his own. He washed out early largely because of this.
  2. Related to this, newer dogs don’t really do intelligent disobedience like the older dogs did. This is when a dog will refuse a command because it is not safe. Doug used to tell us to tell the dogs to go forward at a street corner when traffic was rushing right in front of us, but they wouldn’t budge. Now, the dogs can’t do this. (I’ll talk more about this when I talk about Mia and Cobey.) They have lost that for the most part. This was a most important skill. Sully literally walked INTO traffic with cars coming at him because he thought this is what Nik wanted him to do. He feared displeasing Nik more than he feared being crushed by a car. He was so overtrained that he lost even basic self preservation. I would take a bully dog over that.
  3. The newer dogs lost the overall context of the job. They are so into pleasing their handlers that they look at each task as an individual trick rather than using strategy and context to understand the over all job. YES, dogs CAN generalize, understand context and strategize. I’ve seen it again and again. All dogs are different and this will be true to varying degrees, but it does seem like the newer dogs don’t do this as well. They get overly distracted by food rewards to the point where they lose the overall gist of their skills in different situations.

I’m not saying that we should go back to severe leash corrections, but I do think there is a compromise, and I think I found it in Marra.

Marra’s Training:

It’s sort of a no-no to pretend that any trainer is better than any other trainer and to ask for a particular trainer, so it has to be done a bit on the down low. A little nameless birdie may have told me when Mike would be up for class and that he was the best trainer. So I asked for him and was lucky enough to get him. I was a bit worried to go back to GDF after Sully. It was now 2014, and two years earlier, the entire GDB training staff–the largest in the country–had been laid off due to cost cutting measures. These folks scattered across the county among the guide dog schools, and several had landed at GDF, including the new training director. I saw from other people’s experiences with guide dogs that GDBs methods were getting spread out everywhere. The right hand leash issue, the squirrelly, young dog issue, the low expectations, the route trained dogs that were dependent on routine memorized routes rather than thinking. This was another issue with Sully. He was very, very routine dependent. He did ok for 5 years mostly because he memorized routes. But he also did not want to deviate from those routes. He would get very stressed to go off a route that he was familiar with and it was a problem. It looked like it didn’t matter where you went, that GDB low-end assembly line philosophy was spreading everywhere.

Mike and Marra and I working in the practice blocks on campus. Mike was tickled that Marra guided me around rain puddles. She understood her job!

I had met Mike briefly in 1993, when other trainers would wander through the dorms occasionally. So the main thing I knew about him was that he had been there for at least 21 years and was not a GDB import. I had an extensive interview with Mike in about June of 2014. We probably talked for about an hour, and it was the most extensive interview I had ever had. Because of my past experiences with Mara, Barley and Sully, I felt like I really had a good grip on what I wanted and didn’t want. I wanted a dog who was well behaved in public like Sully and Mara. I wanted a dog that was not routine dependent like Sully and to an extent, Barley. I wanted a dog who could target things and could be taught to target things easily like Mara and Jats. It was a nice conversation that I thought was incredibly thorough and I felt like I had been heard.

In training, Dan and Nik had had some kind of good natured conflict about Nik going off to a deli on his day off. It was still like that in guide dog school, you couldn’t set foot outside the dorms on your own. Nik eventually went to the deli with Dan following behind, but Dan was probably supposed to have the day off that day or something. I can’t remember the whole deal. So when I got there, I was asked if I was going to go rogue like Nik had. (Had my “mad escape” from GDB– where I ran 50 feet as fast as only a pregnant blind person can–preceded me? Were we now the couple that couldn’t stay put?) I decided to be straight up about it. “You guys know guide dog school is like a benevolent prison, right?” I said. “I admit, I struggle with this. I am never going to trust you completely with myself. I will always have an ID, a credit card and the number of a cab company ready to head. I will always be searching for the escape route and planning my route back to where I can control things. I will always feel smothered, surveiled and like you all need to just get away from me. But in general, my plan is to be compliant and do the training.”

And that is how I got the “little freedoms” I got from Mike. Meaningless little things like that I could go out on my own at night around the several acre campus and practice with my dog on the practice blocks or walk in the now defunct garden that I was barred from 21 years prior. Or that I would be allowed to go explore a mall or walk to a coffee shop when my training partner was on his walks with Mike. It was a bit of freedom theater, but it helped.

Marra was a delight. She was happy to meet me and was engaging and had very little issues in the dorm room. She was relaxed and friendly. I did the same walk with her on leash to a dining room chair that I had done before with Mara. This time, it was still a bit nerve wracking, but I knew it would get better quickly. (The name was total coincidence, by the way. I about fell off my chair when I heard it. In fact, when they told me her name the first time, they said it like Mara. Mara was pronounced like Maura Tierney. Marra was pronounced like Sarah.) The next walk was on a park path with no curbs or obstacles. But Marra stopped at each path and looked up at me, showing me where it was and asking me if we wanted to turn there. I did choose to turn on a few and not turn onto others. “Oh, my goodness!” I exclaimed. “She is showing me the paths and asking if I want to go on any of them. This is almost as good as having a cane!”

“Well, you asked for that, right?” Mike said. Then he explained to me how after our interview, he trained Marra to my requests. I talked a lot with Mike about the training process itself and how he was trying to change with the times but keep the standards high. He talked about how he always had to be a bit more creative than some of the other trainers who were larger in stature and did a lot of strong leash corrections. As a smaller guy, he always had to get the dogs to respond to praise more than they did. When food rewards became a thing, he tried to use them where it made sense but not depend on them entirely. He knew that I did not want food rewards for Marra, so he trained her both with them in the early stages, but then without them after she learned a skill. He asked me to compromise, and use food rewards for a few days, to get her more focused on me than on him. I did that, and then by the end of the first week, we had completely left food rewards behind. When I got home, I used them at first to teach her a few new things, and every once in a while brought them out just for fun, but generally we used them very seldomly. Marra came ready to go with many target words already known. She could target elevators, trash cans, chairs, doors, etc. We even worked with the trainers at their sister program, called America’s Vet Dogs, to do some signaling for when there was a knock at the door.

I would take Marra down to a corridor in the basement and we would work on obedience lessons and then just run around the hallways and play. Here Marra is waiting for me to let her out of her “stay” position down at the end of a hallway. I needed to have time where I was not surveilled.

There were about ten people in the class, but there were 5 trainers. Each trainer had two students and mostly did their own thing with the two students, although some days we would all go to the same place together. I was with a student from Brazil who did not travel independently at all. He could not do street crossings independently. He was a professional in law, I was told, and he had drivers and assistants to do everything for him. I asked Mike how he could qualify for a dog. Mike shrugged. He said they try to select people who will benefit from having the dogs, but sometimes the benefits may be more social than navigational. For my Brazilian partner, it was likely more of a social bridge to acceptance for him. Hmmm, okay. I know that there are serious cultural barriers in some other countries for blind people and maybe that is worth it. But it also seemed like a waste of a trained dog. A person like that might do better with a dog with good obedience skills and decorum, but no guiding skills. (a dog like Sully?) It made me wonder if they trained dogs at different levels specifically for how people will use them. At what point is a dog still a guide dog?

The way they seemed to train dogs at that time was kind of interesting. They seemed to adopt some of the short kennel time of GDB, but still keep training standards high (at least for Marra. I did not see a lot of the other dogs this trip because of the 1:2 ratio thing.) Although I am sure the dogs are well cared for, being in a kennel for months on end is not good for the dogs. It stresses them out. It can be boring, it separates them from people and home life. It IS a prison. Mike indicated that GDF was trying to give the dogs as few transitions as possible and keep them in the kennels as little as possible. Marra went from her dog mother to her puppy raisers, to Mike and the kennels and to me. Her kennel time was low, only about 12-14 weeks. Mike had her the whole time, with his string of about 4 dogs, he was then in 2 classes for the month training with his 4 dogs to their blind handlers, and then he started the process over again. And a very well trained dog came out of that 12-14 weeks, with one trainer doing 4 dogs at a time. Maybe best of all, you trained with the trainer who had been with your dog for the last 12 weeks and knew exactly what they knew. And they could overlap and ease the dog into the new relationship.

The Facilities

This was the same campus I went to in 1993, but the entire dorm building had been remodeled. We all had single rooms now. It was a bit less like a house and more institutional, but overall it was fine. Basic, but fine. We still utilized the practice blocks they had on campus, and took the bus or vans to other locations. We worked in Smithtown, and Huntington mostly, but also went to Queens to do subways and the like. They still had no other “waiting” places, so we stayed in the vans a lot when it wasn’t our turn. With one trainer and two students with close by places to train, we took about 4 walks a day with the dogs. The waiting time was usually never longer than 20 or so minutes.

Level of Custodialism:

It was a little better than in had been in 1993. No longer were we barred from rooms of other classmates and no more separation of genders by wing. I, of course, had a bit more freedom than my classmates, basically because I asked for it and they let me. But you were still stuck there and there was a night babysitter of course, but she pretty much let you be. My training partner highly valued access to alcohol, so it was procured for him but weirdly, they made him drink outside of his room. So sometimes I would see him in the little snack lounge drinking beer and listening to Portuguese music.

Although Mike didn’t really do this, there was still a habit for staff to say that anything you did independently was because you had vision. I highly doubt I had the best vision of the group. In fact, I know I did not. But it was constantly said that I got to do some of the things I got to do, (like work my dog at night on campus without supervision) because I could see. This was funny to me because I am really night blind, and I actually asked to work at night because I knew I would have more of a challenge working at night than during the day. In any case, there were people who could see better than me who did not get these “little freedoms.” But it is probably because they didn’t ask.

I did have to try to back Mike off on standing right there and telling me every little thing. I don’t mind this on the first day or two when you are just getting used to the dog, but by the third day, you really need to work on trusting the dog and trying to see what it feels like when they are telling you things. So, for example, Mike would say “There is a set of four stairs coming up in about 15 feet.” Well, thanks for telling me, now it doesn’t matter what my dog does because I already know what is coming. When I asked him to back off, he did a bit, but seemed surprised I didn’t want all of this visual information. But Mike! I won’t have you with me when I go home! How will I know how it feels when this dog is telling me we’ve hit stairs if I anticipate them now? Again, this comes back to the traditional vs. structured discovery style of O&M. Guide dog trainers are largely not trained in O&M, at most they’ve been to a few CEU classes–likely taught by sighted traditional O&M instructors. They do spent some amount of time with each dog under blindfold, but are never left alone without another sighted trainer with them telling them everything that is ahead of them. They don’t really have a good idea how a lot of us travel.

One thing that was a definite improvement was that upon graduation, I was able to take ownership of my dog. This has been a hard fought for right of blind guide dog owners. I first was able to own my dog when Mara was about 8 years old. They had changed their policies and sent me an email that gave me the option to sign ownership papers. I was at work and I cried. I sent back the email indicating I wanted to sign the papers and got down on the floor with Mara and hugged her. She was really finally mine! Some schools act like it shouldn’t matter, but I’m sorry. It does. Again,why do they vet us so heavily but yet not trust us to own the dogs after we graduate? Do they not trust their own program? With Marra, I was given ownership papers upon graduation, which is how it should be.

She’s MINE! Marra was the first dog I got to “own” upon graduation. Yes, it matters.

There was one thing that really bugged me, though. One of my classmates was a staff member there. She worked in client support services (which is where every single blind staff member who works at guide dog schools is placed.) I thought she was treated horribly. On the one hand, I get that this is her own time and they wanted her to have time to concentrate on her own dog training and be off the clock–which is totally fair. But you would get into a discussion about guide dogs with her and from across the room, a staff member would cut her off and say in a condescending tone “Now, Jane (not her real name), you know you are not allowed to discuss guide dogs with the clients.” She who was on her third or fourth dog couldn’t even tell a story about a past guide dog. And you would ask her a simple question having to do about say, purchasing a new leash (like would I come to you or have to contact the training staff) and they would rush in and be all, “are you asking Jane questions??? She can’t answer any questions!” But the worst thing was that she said she wanted to be promoted but she had a–shall we say–a sighted glass ceiling she could not break through. The next promotion up required that the staff member stay over night with the students occasionally. And they would not let a blind person do that, and she could not get past that requirement. I understand the babysitter thing to an extent. I get why you don’t just let 10 random people have the run of your entire campus alone overnight. But really? a blind person couldn’t babysit us? To GDB’s credit, they had blind people in these roles. It really hit home that these people really do think of us as second class citizens.

Graduation:

Again, graduation at GDF was a reception with only puppy raisers, sponsors and handlers invited. They did have a filmstrip of us that they had taken throughout the training there, and they showed it to us twice. Once before the guest arrived so that they could describe it to us, and then once when the guest arrived we sat through it in silence. I thought it would have been better to describe it to us with the guest there, because it would be good modeling of accessibility and it might have been more interesting for everyone to have some back story. My puppy raisers were a lovely family with children, and they did get to visit with Marra this time. I think it is important to see how much your dog is happy to see the puppy raisers. It shows her past, and that she had a life before you, and that there is some hurt and loss involved during these transitions. That is important to keep in mind and that gets put in your face when you see how excited the dog is to see the raisers and how sad she is when they leave. The family was very respectful about it and I enjoyed meeting them. Overall, the graduation was casual and not very much inspiration porn at all.

Bringing Marra Home:

The main transitional problem Marra had for a couple of weeks when I first brought her home was that she chewed through about 4 leather leashes. And to be fair, I should have mentioned this in my first chapter on our airport trip. She did chew through her leash in the airplane on her way home. So it wasn’t completely uneventful. But think of it this way, I guided her from the airport to the hotel without a leash. She chewed it in half down too short to be useful. I only had the harness to hold on to, so I could not drop the harness handle, do any leash corrections, give her a little nudge, anything. And we still did ok making it to Nik’s hotel, including meeting Sully! This was a good guide dog! She chewed her leash and a couple of shoes in the first few weeks, but that was it. We really had no other problems.

One of my favorite pictures of Sully and Marra, here with two of my children. They always got along.

But she was an energetic, young dog. She would get too excited and pull too hard sometimes. I specifically remember having her down in Pioneer Square in Portland during a Christmas event. So this was in the first couple of months that I had her. There was a lot of excitement and she was sniffing around with her head down and getting on my nerves and so I finally gave her a fairly hard leash correction. And she dropped like a sack of potatoes. Oh! MY! These dogs are soft! I felt bad and I vowed to never do that hard of a correction again, (and I don’t think I really have.) But here is the kicker. Unlike Sully, who would have been useless and sulked for hours, after I squatted down and gave her a few pets, Marra bounced right back to it and was fine. All was forgiven and we moved on in life. I realized both that I did not really have to do very serious leash corrections with her (a small little tug to pay attention was all that was needed when she got distracted.) I also realized that this dog has some wherewithal to get on with it and bounce back. She has confidence.

Mike told me that what we are asking guide dogs to do is easy. The hardest part is to keep them interested and motivated to do it. He had high expectations for the dog and at least understood that blind people are all different and come with a variety of skill sets.

Marra was still not as savvy as Mara. We’ve gotten into a few jams that she just couldn’t figure her way out of in the way that Mara would have. But overall, she has been an excellent guide who came very well trained both as a guide and with good decorum. She came to me healthy mentally and physically and was very “finished off” as far as being ready to hit the ground running as a guide and work right into my life with very little work that I had to do at home. She eventually developed hip issues and leg tremors, but I had many good years with her before she retired.

NIk and I with Sully and Marra walking in Skokie, Illinois. Sully scraped by his last few years of guiding by following Marra a lot. She was fine with that, she preferred to be in front and call the shots. (Oh, and I had a broken foot, that is why I have two different shoes on!)

Marra’s timeline:

Born: April 3, 2013
Puppy raisers: June 2013 to June 2014 (13 months)
In for training: July 2014 to mid October 2014 (14 weeks in kennels)
In class: October 15, 2014 to October 31, 2014 (16 days,age 1 year, 7 months)
Working Guide: November 2014 to October 2023 (9 years)
Retired: October 2023, still living with us as of this writing.
Died: November 30, 2023 (10 years, 8 months). Marra suddenly and unexpectedly died just days after this post was written. She died of hemangiosarcoma, a spleen tumor that is hard to diagnose.

Final Impressions:

It’s probably not entirely fair to compare Dan vs. Mike in the context of Sully vs. Marra and how successful they were. The data pool is way too small. And again, I liked Dan, he was a nice person who did seem to take a lot of pride in his job. But he was in my class, too, in 2014 and I watched him with the other students. He was not as experienced as Mike and did not at that time have a real knowledge of how blind people traveled or worked dogs. In every profession, there are younger, less experienced people who need time to learn and grow with the job and should be fostered to do so. What I noticed at this round of GDF, though, was that Mike was holding up an old standard and it was not being held up throughout the rest of the staff. In this way, how can one blame the Dans when they aren’t being given a lot of guidance in how things could be done better? When I was there, another older trainer named Barbara was there. She was soon to retire and she came to visit me a couple of times. She wanted me to meet with John. Remember John from 1993 who called Nik “fat boy?” I was not a fan of John’s back then. But Barbara was very excited and insistent for me to meet with John as he had retired due to Alzheimer’s. He was still on staff as “Head Trainer Emeritus” but I don’t think he had any duties. I agreed to meet John and I brought a picture of our class (as seen in the last chapter of this series.) I don’t know if he remembered me but he seemed to remember Nik. I only visited with him and Barbara for a few minutes, but there was a very wistful, “it ain’t like it used to be” vibe. I hugged him and he said, “back then, we trained good guide dogs. You were trained well, too. You know how to do it and you need to keep it up.” The idea that he seemed to be trying to get across was that he taught us the right way, so no matter what was going on now with the newer guide dogs, I had been trained well and knew how to keep that information alive and pass it on, as well as make sure my own dogs still lived up to it. I felt like I had won the jackpot with Marra as one of the last old school guide dog with one of the last old school trainers. We are still very fond of Doug, who is a very nice man who has been very helpful to us over the years. But Mike is hands-down the best guide dog trainer I have ever worked with.

In our house now we have three dogs. I will talk about our new dogs, Mia and Cobey in the next chapter. But Marra remains the Head Guide Dog Emeritus.

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

See also:

What’s the Matter with Guide Dogs? (Chapter 1: What Happened at the Airport?)
What’s the Matter with Guide Dogs? (Chapter 2: Mara and Jats: The Gold Standard)

A Brief Interlude on Orientation and Mobility:

In the past, I’ve used the term “low skilled traveler” to describe some blind people’s travel behaviors, and I don’t really like that term because it sounds judgmental and it isn’t meant to be. So, I came up with some new terms:

Minimal travel: the type of travel where a blind person mostly utilizes sighted guides and door to door transportation much of the time. For example, a person might choose to take paratransit from their door to work, then get escorted by the driver into the workplace. This is the type of travel where a blind person does not walk independently much, perhaps only indoors or for short distances like from a car to a building.
route travel: the type of travel where a blind person has memorized a route, most often with the help of an O&M instructor or other sighted person. Whenever possible, they stick to these approved routes.
freestyle travel: the type of travel that is done without having done it before or have been walked through before with a sighted person. Sometimes questions are asked and research is done before-hand, but mostly a person just explores their space with their tools and senses, and figures it out as they go.

These are just rough categories and most blind people do a bit of each of them depending on the circumstances. For example, I was a minimal traveler when I had a broken foot and was on crutches. I depended on ride share and the help of others to walk with me because I had no hands free to use a cane or dog, and no stamina for much else. Now that I am more hearing impaired than I was in my past and have kidney disease that exhausts me, I do more routes that I know than freestyle. But I learned in a freestyle method and still enjoy just going out and exploring when I have the time and energy. My husband, Nik, is very much a freestyle traveler, but even he has routes he memorizes from time to time, albeit often after freestyling the route and teaching it to himself.

There are many reasons why any individual blind person might predominately be one style of traveler and not the others. Other disabilities factor in to how people travel. Different personalities and preferences factor in to how much one might prioritize or not prioritize a certain way of traveling. Finances and the environment in which one lives and travels also plays a part. People have the right to choose how they travel, and there should be no judgment about what one chooses.

That being said, freedom of movement is a fundamental right. And we should all have the opportunity to learn and choose what type of travel is best for us in any different situation. Too many times, people fall into the first or second category not by free choice but by a lack of opportunity to learn and develop the skills to have a full range of choices available to them. A choice is only a choice if all the options are known and available. For many blind people, this is not the case.

I have written about this many times, so I will be brief here. But there are different “philosophies” of non visual travel. The traditional O&M method teaches (in a nutshell) that people who travel with limited or no vision travel with a massive deficit of information that can only be filled by a sighted person, usually an “expert” in orientation and mobility. This expert teaches predefined routes by walking the blind person through it and filling in all the necessary visual information. The sighted person has then “approved” the route for use, and the blind person memorizes the route and does not deviate unnecessarily from it.

Another philosophy is the Structured Discovery method, which was developed by blind people for blind people. This philosophy states that although vision is extremely efficient and convenient for travel, it is not inherently necessary to safely travel. Using other senses and your brain are a safe way to explore the world and move through it. The built environment is set up in a very visual way, which does present real challenges to moving through the world non visually, but if a blind person develops skills like mental mapping, detecting clues via other means and senses, and exploring, they can pretty much go anywhere they want to go. The structured discovery instructor helps the student develop their own detective skills and exploration skills and confidence through a socratic questioning method–that and as a role model as someone who has spent countless hours traveling non visually.

Most “freestylers” come from the structured discovery method. (Nik was more self taught, though, and there are a lot of self-taught “freestyler’s” out there. Or I should say, “informally taught” with help from other blind friends.) I came from a structured discovery program.) And interestingly, most freestylers do not use a guide dog because a cane is such a useful tool in exploring your environment while a dog sort of moves you through it without exploring it. Traditional cane travel still dominates, especially in K-12. And that means that the average blind person is a route traveler most of the time. Based on personal experience? Freestyle travel is a lot more fun and makes for a lot more of an interesting life than does route travel and certainly more than minimal travel. In fact, I have observed that many route travelers are so keyed into their perceived necessity that a sighted “expert” needs to approve their route, that they literally have developed anxiety disorders from this style of teaching and sometimes are too afraid to go “outside of the lines” because they have been so conditioned to the premise that a sighted person needs to approve the route for them first.

Again, I want to reiterate that people have every right to choose how they move through the world. No one should be judged for these choices. However, I would like to see people have more opportunity to learn different methods of travel than route travel. I do think that barring other disabilities, the average blind person can learn the skills to “freestyle” and the average level of blind travel could increase if more people had more opportunities to build these kinds of skills.

And for those totally blind since birth: I do appreciate that there is more involved brain-wise for folks who have never had vision at all and whose brain likely has developed differently because of that. Especially those who are older and came from a time when little blind kids were not given canes and were discouraged from free movement as children. More research is coming out that spatial skills can be developed by congenitally blind kids when they are given the freedom to move and explore and use tools like canes when they are very young. I recognize that being blind from birth does affect travel in a unique way, but I also think that it is 100% possibly for these individuals to develop the skills that allow for a more organic, freestyle type of travel. I’ve seen plenty of folks who have proven that it can be done.

I think this is from my ID card, which I can’t find. It is Barley and I sitting outside on a bench in the North Park blocks at PSU. Barley is a yellow Labrador.

All this is leading to what I started to see at the guide dog schools when I went to get Barley, my second guide dog from Guide Dogs for the Blind.

Why I picked this school:

In the 2 years that my first guide dog, Mara, was in her retirement and died, I had a dying mother, a very sick partner, and eventually twin babies. Getting a new guide dog was not in the picture for me. When my kids were 4 and mostly walking on their own and were very good at stopping at curbs and not rushing out into the street, I started thinking about getting another guide dog. My decision to go to Guide Dogs for the Blind (GDB) was entirely about proximity. Their father was a wheelchair user and could care for them at some level and my father was there, and he could…lets say if there was a fire he would get them out and maybe make them some Mac and Cheese for dinner, but that was about it. I felt like between the two of them, my kids wouldn’t die. But I also felt like I should be nearby if the whole thing blew up. GDB had a campus about 30 miles from where I lived. I just thought, “how different can the schools be?” and applied.

Looking back, there were plenty of warning signs I chose to ignore. First, I noticed in Portland that guide dogs kind of had a bad reputation, unlike in the midwest where I had moved from a few years earlier where guide dogs were highly respected. I remember talking to a VR counselor about job interviews and she told me not to take my guide dog because it would hurt my chances. This seemed totally weird to me. Guide dogs are great in interviews. They are ice breakers. They can gracefully follow the interviewer back to the office, they can find your seat elegantly, they will just sit quietly after that. How could that be bad, unless you had the very bad luck of interviewing with a dog hater? But the counselor was like, “no, you will be just fussing with your dog the whole time instead of being interviewed.” I didn’t understand this and passed it away as just VR counselor weirdness.

Then, I was in a mall with Mara and rode up the escalator with her like I had done many times before. And some woman started yelling at me. She said, “I know guide dogs are not supposed to go up escalators!! I’m going to report you to your school!” I told her my school TAUGHT me to go up escalators, but she assumed that I had gone to GDB, and they didn’t allow it. Weird. I thought. But didn’t think too much about it.

Another time, I was asked to walk this young blind high school student and her new GDB dog from a building close to my house to the nearest light rail. She had not had her dog for very long, and her dog was absolutely OFF THE RAILS the entire time I walked her the few blocks to the train. Like, left right behind her crazy all over the place. It full on went Cujo when we attempted to pass a neighborhood dog and she lost complete control of it. I had never seen a guide dog act this bad, even my Mara who did early on have dog distraction issues. At first, I said nothing, thinking I need to give her space to deal with it. But despite her efforts, she could not get him under control. Then I suggested that she might talk to her trainers about it. And she said she had, and they just said this is how it is in the beginning. Then I told her, “this is not how it is in the beginning. It’s not this hard, or it shouldn’t be.” And she said that everyone from GDB says this is pretty typical. And it kind of was. When I had been to advocacy meetings where a lot of GDB dogs were there, they were up and wriggling around much of the time. It could get quite distracting.

Then, when my GDB interviewer came to see me, she wanted to take me for a walk to see my cane skills. I told her I had to drop off my kids down the street to their dad’s house and then we could walk solo. So, I got my kids in their little wagon I had been using. It had two seats facing each other and I pulled it behind me. She told me how I could NOT do that with a guide dog because it wasn’t fair to the dog and they wouldn’t understand how to do it. But this is basically how every blind parent does it! I exclaimed. My other dog could do this and I was even taught how to do this with a grocery cart. I even showed her a picture on the front page of the GDF website that had a mom pulling her kid behind her in a stroller with a guide dog.

The last bit of weirdness was that I got rejected by them at first. Why? because a year prior, I had been visiting Nik in Toronto and we had dinner with a GDB guide dog user. At this dinner, we discussed whether I should move to Toronto. It was all hypothetical. I couldn’t move, I had kids whose father lived in Oregon. It was just a casual conversation. Well, this guide dog user mentioned it to a GDB field rep who told the admissions staff that I was moving to Toronto and hadn’t reported it. It was like a bad game of incestuous, gossipy telephone. And instead of maybe, calling me and asking me about it if they were concerned, they decided to reject me based on third or fourth hand information they heard about a conversation I had at a social gathering a YEAR before I even applied. I got that straightened out, but it did not give me a lot of confidence in this organization.

The twins and I with Barley and her awful stick-up harness handle by the Willamette River in downtown Portland. This was taken on our 1 day off when the kids’ father (wheelchair user, Dwight) brought them down to visit me. We were free to travel around downtown Portland with the dogs on our own if we desired.

In a complete turnaround, I was then asked whether I wanted to participate in a pilot program they were doing. Instead of going to the campus, 4 of the students in the class (who were “the most independent”) were going to stay in the dorms of Portland State University in downtown Portland and do all of our training from there. Did I want to do that?

Absolutely, yes I did! Now I was only 12 miles from my kids. In a dorm in the city! How much jailing could happen there? I mean, if I wanted to, I could just walk to the light rail station and go home. Not that I was planning on it, but just knowing I could made me feel better.

The Training:

I met Barley in my PSU dorm room. She was wiggly and friendly and I loved her instantly. I believe I got her the second day of this 14 day program. I sat on the floor with her and we threw a nylabone around and she crawled into my lab and licked my face. It all seemed not unlike the first meeting I had with Mara. Very cute and exciting and happy. I first started noticing differences when the four students were supposed to meet in the lounge area with our dogs. The dogs did not sit quietly like they had in my last class. They were squirmy and they wrestled with each other and wriggled away and were just like a litter of little puppies. I thought they were just excited on their first day, but I thought it was weird that the instructors said nothing about it.

The second weird thing was the harness and the leash. I was taught not to put the leash around my wrist but to tuck it under my first two fingers of my left hand. I wonder why? It was awkward and felt like I could lose her if I used my left hand for anything. But it soon became clear why. They used the leash as a hand signal for the dog. To get the dog to walk forward, you took the leash in your right hand and gave it a little tug forward, past the dog’s face. You did the same thing for left and right. The leash was the physical sign for the dog to move. I felt a sense of dread. Why? Why not just use your right hand, or you know, WORDS. I have small children, I need a free hand. I can’t be doing this. I asked how I was supposed to hold a kid’s hand or carry groceries, and the trainer said, “have your family members do it.” I live alone! I don’t have family members there all the time for this. This isn’t going to work. I started to make a mental list of things that would have to change.

The harness handle itself was this weird white handle that connected to the harness via a sort of rubbery male connection in female socket thing. it had no give like the metal rings of my old harness, so no gentle tugging to get a dog’s attention. And it stuck up and got stuck EVERYWHERE. Under the restaurant table, in the van, under a desk chair. Everywhere it stuck up obnoxiously and got stuck. So many times I was under the table at the pizzeria wrestling that harness handle out of tight places while Barley pulled desperate to be free.

Then there was the food rewards. Food rewards were a new thing after the strict all food forbidden way I was taught at GDF. But food rewards have taken over guide dog training, so I should talk about the good and the bad here, because there is some of each.

No one likes leash corrections. It is rather abusive. And in the ABA lexicon that is dog training, positive behavioral supports work better and are more pleasant for all. The problems schools were having was that some people, including me and little old ladies and what have you, were not physically strong enough to leash correct a dog in a way that would make the dog care. It also looked very bad from an image standpoint to have blind users jerking violently on their dogs. Schools got calls about blind handlers abusing dogs, when they were doing exactly as they had been taught. So, a couple of things had taken place since I had gotten Mara. Guide dogs were being bred to be smaller and “softer” to control. They had also been switched to food rewards to work.

I was in support of decreasing or even eliminating leash corrections. And a smaller dog was fine with me. (We will get into the issues with “softer” dogs when I talk in the future about Sully.) And I can totally see how food rewards could be used to teach new skills. Where I objected, though, was that I as a guide dog user would have to use food rewards for the long term rest of my life. It’s not practical or doable. You can’t be a professional and wear a pouch of treats all the time and have your hands constantly smelling of dog saliva and again, not have full use of your right hand. For short term or limited uses, fine. But this could not be the only reason a dog works.

Only guide dog users get what I mean when I say this, but guide dogs need to understand and want to do their job. They can’t just do isolated tricks for food. I don’t mean that they understand that I am blind and they are my navigational aid. I mean that they understand that overall, it’s a good thing for them to walk around without me, their handler, falling all over them and making a lot of racket. They get the overall strategy. And they also get that finding things is fun and makes me think they are a wonderful dog. Any dog can learn to stop at a curb and get a treat. A guide dog should eventually realize that stopping at a curb prevents them and their handler from getting smashed by a car. It’s self-preservation with a wide berth.

What happens to some dogs, especially very young dogs, is that they get so into getting the treat, they are not really able to think about anything else. They don’t care about the job or get the overall objective, which is to have a nice walk. They perform for treats. This can be dangerous. I would be with Barley down town and she would not walk up the sidewalk when she reached the curb until she got a treat. So our butts are out in the street and cars are brushing past us and she does not care. She is all about Treat! Treat! Treat! I could go ahead and pull her up the curb, but that is not really a guide dog, is it? It’s a dog who is distracted by treats just as much as they could be distracted by dogs, or an interesting smell on the ground, or a homeless person on the side walk. There is no difference. It is a problem behavior.

So there was the right hand leash issue and the food issue and the squirm issue. The squirm issue in that class was high. And the trainer expectations were low. We would go to restaurants and the dogs would be messing with each other and up and down and walking away and it was constant. And the trainers acted like this was normal. It was hard to eat. You constantly had to retrieve your dog. And when the four of us would be together, like back in the dorms, the dogs were constantly at each other wrestling and playing and growling and barking. And the trainers acted like this was normal. We had a guest that came to visit us in the dorms with a young guide from the Seeing Eye. And the dogs were all nutty except for hers. And she was like, “why are your dogs doing this? This is not how they act in my class.” And I agreed that it hadn’t been my experience at GDF either. And the trainers kind of acted like we weren’t really telling the truth.

The low expectations continued to things like finding things and backchaining, a method of teaching a dog a target. I learned to teach my dog about a particular coffee shop door. I didn’t understand why we had to learn it this way. We had to teach them the door in like 20 steps. First a treat right at the door, then stand a foot away and treat them when they got to the door, then stand 1.5 feet away, etc. etc. until we were about 20 or 30 feet away. The dog at this point is just like, whatever…more treats for me! In the past, the way I did this was to go up to the door, point to it and pat it, Name it something “Coffee shop!” Then tell the dog in a happy excited voice “Good coffee shop! You found the coffee shop! Good girl!” or something like that. Then, you could go like around the corner and do it again, or just the next two or three times you went there, you would do the same thing, depending on how often you went. It took all of 30 seconds each trip. Done. After 3 or so times, you would just round the corner and say, “Find the coffee shop!” and they would find it. And then you would praise them.

I told my trainer this and it was like she didn’t believe me. I also told her that my dog could find bus stops. She took me out to a bus stop and we did the back chaining. And she said, “so I’m just showing you how to do it because you probably won’t use this bus stop too often.” I asked her if she thought it wouldn’t transfer and generalize if I did it a few more times at a few more bus stops. She said that no dog could do that. But they could learn one or two bus stops. I felt like I was being called a liar. Like Mara could, and Jats could. No, not perfectly every time, especially if the bus stops were really different looking. And no, I don’t think they could find the bus stops in a different city that looked different. But in our area, they were distinct. They were hexagonal blue poles with half circle signs. And most of the time, our dogs found them for us if we were in about 1/2 block or so. But they said these guys couldn’t do it.

She kept asking me if I liked the dog. Of course I liked the dog. She was a friendly goof ball. I was just trying to figure out what she knew and didn’t know, and how I could work with her at the same level as my past dog. Was it possible? if so, how? And why didn’t the trainers seem to think the dogs could do anything? Had the “softer” breeding affected their brain power? I’m just trying to figure this out. Either she was so unaccustomed to any questioning she mistook my questions as a criticism of the dog itself, or it felt like a veiled threat. “Don’t you like the dog? Because if you don’t, we can just quit the partnership and remove you from the program. If you don’t want that, then stop asking critical questions.”

Barley and I with one of my sons and their father on the GDB campus on the graduation day right before we went home.

The last few days were spent at the actual training center in Boring, Oregon. We had no air conditioning at the dorms, and one of the students had a health condition that made this hard. We all took a vote, and of course you can’t be a selfish asshole and vote against a sick person who is suffering. But I didn’t want to leave downtown Portland. At the dorms, I noticed that the whole level of training and expectations took a dive. The 4 pilot program participants were indeed much better travelers and more independent than some of the rest of the students. In my first GDF class, I had this idea that to get into the class, you had to be a really good traveler. None of the people in that class had many issues just doing the routes. Now, I was with students who did not know the direction of the door to the dining room they had been in at least 3 times for the last 10 days. I wondered how they would even use a guide dog effectively. I remember that we had an A team and a B team in the dining room, which were alternating days you could take your dog with you to meals because if there were too many dogs, they would get too squirrelly. I thought about the GDF dining room, a third of the size, with all of the dogs and rarely did any make a peep. In the GDB dining room there was constant fussing over unruly dogs. The other thing I found amusing was that one day we were going to practice going through a buffet line with the dogs. This is a difficult thing to do. I did it the way I learned it, holding your plate or tray in front of you while your dog guided by leash on your wrist. But here, we just walked through the line and people got our food for us and carried it to our table. So I couldn’t figure out the point.

The last few days were the toughest. Once, I did take a walk on their nature path (without my dog) and then found myself in a big field. I just started running. Not running away, just enjoying the freedom of the wide open space. But literal alarms had gone off when I left the property, unbeknownst to me. I didn’t know that I literally could not leave the property for a few minutes. Somehow, several staff members came for me. The first was just a kennel worker and she was nice, and just told me that they were looking for me and I should head back, which I did. But the next guy apparently lived in a house close to the field I was running in. At this point, I was walking TOWARD campus. . But instead, he stopped me and yelled at me for 10 minutes about how he deals with blind people all day long and he shouldn’t have to deal with them on his off time and that I just need to be out of his face. It was very pleasant. I kind of felt like saying, “if you hate working with blind people so much that you can barely stand to have one in your line of sight for 10 seconds on your day off, maybe don’t live RIGHT NEXT TO WHERE YOU WORK!” But I didn’t. I went back and then talked to 15 other staff members about how I shouldn’t have gone off and walked a mere 50 feet away from campus. In my head I’m thinking “I AM and adult. This is ridiculous. I did not do anything illegal. I walked on earth. I go all over the place on my own. I have children. I have a job. I AM an adult.” Guide dog school does weird things to you.

Level of Custodialism:

At the dorms at PSU, it was great. On our off time, we could go to the coffee shop or the Chipotle’s in our building. We ate across the street at a dorm cafeteria and could go anytime we wanted during their hours and when we weren’t training. The first few days, we were not supposed to be gone long and were not supposed to take our dogs, but after a couple of days, they said we could go pretty much anywhere we could walk to. They did not make us check in or ask permission or anything. We also paired up with another student often and did routes together and even though one of the two instructors were several feel or up to a half a block behind us, they pretty much let us do what we wanted. I remember once, my classmate and I were a bit lost. But we worked together and figured it out and no one intervened even though I know they were following us and listening to our conversations about it.

But, all was not what it seemed. The two instructors were nice enough, but they lived way out in the country nearer to the school campus and they hated coming all the way in everyday. (Even though normally they would have had to drive to work on campus and then pile us into a van and then drive in.) And they took turns staying overnight. Like all guide dog trainers, they had a million pet dogs at home, so this was a challenge for them. I understood this, but I assumed that if the pilot would have been made permanent, they would not have required this and maybe would have hired some PSU blind student to do it or something. (There was a blind resident manager (aka night time babysitter) at the main campus.) So–and this came to me thirdhand what actually happened–they sort of plotted against us.

The infamous Cheerful Tortoise photo. We were probably a little dumb to agree to this. Can you guess which is the pregnant mom, the Mormon, the fitness nut, and the mild mannered mom? None of us ever got drunk.

We often went to a local bar next door called the Cheerful Tortoise. Here is the group: I was 4 months pregnant by this time. I don’t normally drink much but I was not drinking at all. My other classmates were a Mormon who did not drink, a fitness/body builder guy who might have 1 beer but was loath to put any extra calories in his body, and a professional mom-type who was more of an occasional glass of wine for dinner type. No one got drunk, no one was unruly, no one spent too long at the bar. It was actually the trainers who suggested we all go there, and it was more of an after work hang out thing. We stayed maybe an hour and then left. But the trainer made a really big deal about getting a picture of us all. And then she made a really big deal about getting this picture blown up. We even went to Fedex Office as a travel route to do this. I didn’t get the whole thing at the time, I just went along with it. But apparently she took this photo to the boss and said “Imagine how wasted and dangerous everyone is going to get if we do this program. This was just one night.” So, even though we were all fine and responsible, that was apparently the end of that. I mean, you go through a YEAR of screening for these programs. Doctors visits, references, multiple interviews. Home visits. It’s more work than getting into college. But with all that vetting, we still couldn’t be trusted to be responsible adults who could have a training event near a bar.

The GDB dorm life was hard for me because I was pregnant and they fed us at 8:00am and then at 5:00pm and then you went 15 hours without food. There wasn’t much to do either, or anywhere to go. I was STARVING and dizzy by breakfast. A note about my pregnancy. It never occurred tome to tell them I was pregnant. When I did my medical, I wasn’t pregnant, and then when I was pregnant, it just seemed like what all women do. Do woman not work during pregnancy? I was still working. Do woman not walk during pregnancy? I was still walking several miles. I was only 4 months along by guide dog school. I was just a few miles from my OB if anything happened. It seemed irrelevant to me that it would matter. It didn’t matter. (Besides, I figured the field rep from Toronto could fill them in. Heh.) This pregnancy was easy for me because it was just one baby compared to twins. And Nik and I were straightening out our immigration stuff, and I knew he would be on parental leave by November, before the baby was born and two parents would be able to be in the house. So, nothing was said to me at the time of class about it, but it came back to bite me in the ass later. More custodialism to come!

Facilities:

The PSU dorm was fabulous. It had its own bathroom and kitchenette, but that hardly matters. The GDB facilities were pretty. nice. Not as nice (I’ve heard) as their campus in San Rafael, CA but nothing to complain about. At that time, the room we had at the GDB dorm was shared, but it was sectioned off by closets so we really only shared the toilet shower room, we each had our own sink in our room. There was two “lounge areas” that we also stayed in. One was in downtown Portland with some tables and chairs and the other was in Gresham. It had booths. We did spend some time in these and that is where we also interacted with the other students in our class. The PSU students did not have to spend very long driving in vans because we just spent time walking downtown. I thought we got a lot of walking time in this way. I did ask to go do train platforms, and I was surprised at how little they knew about them. There was really no training at all. We just stood there for a few minutes and talked about them. When Barley got on the train, she just stood there. I had to direct her to a seat and show her how to sit down under the seat. Another surprise for me after Mara.

Graduation:

The PSU pilot group’s graduation photo. It was too good to last.

I found graduation at GDB to be major cringy and awful. Barley’s puppy raisers were a very nice family and I enjoyed meeting them, and I talked to the daughter on the phone. But they have this big open-to-the-public graduation that was just over the top bad. I get that it’s a fund raising tool, and I don’t mind doing my part to fund raise. But I don’t think that fundraising should be at the expense of blind people’s civil rights. What I mean is, we deal with many misconceptions about us that cause people to discriminate against us. Instead of trying to dispel some of those misconceptions, GDB perpetuates them by painting a pitiful picture of blind people before their lives are dramatically changed with a guide dog that gives them back their dignity. I call total bullshit on that and I think the message is harmful. I will sit here and write a whole blog post and do a whole speech about how guide dogs can be great and are very helpful and do improve my life. But they do not give me dignity and I was not a pitiful, dependent thing without them. I have just as much dignity with a cane, even if it does take me longer to walk down a street. The way I move is not what gives me dignity.

So after wasting an entire day going through painful rehearsals. We then had to sit through a video showing our pitifulness. Then they took our dogs and canes away. They “sighted guided” us up on stage while our puppy raisers came to the stage with our dogs. Then there was a ceremonial handing over of the dogs, further rubbing in this image of how dependent we are until we get the dogs. The dogs are confused and like WTF? and you have to settle them down while you stand there and try to say something nice about your puppy raisers and thank everyone. Major points and encouragement for sob stories. One student said something like “I am not the same person I was 14 days ago” and she was on her third dog. I asked her if she really felt that way, and she said she didn’t know what to say so they gave her a prewritten speech. And I don’t know how many times they said “you’ll all need tissues after you hear our students’ stories.” I swear I was going to make my story as brief, deadpan and boring as humanly possible. I will thank people and talk about the good that guide dogs do. I am not your inspiration porn.

Other highlights include a couple of people’s dogs barking constantly and no one acting like they noticed. And a demo of a guide dog working but they used a sighted person to do it. Like, they don’t even believe in their own dogs.

Here is the weirdest thing that happened at graduation, though. I had two four year olds at home, and a quadriplegic in a power chair as a very frequent visitor and that I visited often. I told them this. Then the puppy raiser daughter tells me on the phone the night before that Barley got kicked out of her school and she said Barley doesn’t like kids. We just laughed it off. Then when I met the rest of the family on graduation day and they were really surprised to find out I had kids (and was visibly pregnant.) They said they told the school that Barley isn’t great around kids and didn’t seem to like kids. They thought she would go to a childless person. Weird, I thought.

Then, I got back to my dorm room and my roommate is there with a room full of people. Her guide dog’s puppy raisers. Her dog is excited running around to all the little kids and….to the teenager using a power wheelchair. Her dog was completely comfortable with this kids’ big-ass full tilt-in-space wheelchair with head rest and everything and loves the kids. Later, I find my trainer and I’m all, “hmm, so my family says Barley doesn’t like kids and I have kids and a member in a wheelchair and (roommate’s) dog was raised with kids and a kid in a wheelchair!” She goes, “hmmm, it’s as if you got the wrong dog.” and changed the subject.

(A couple of weeks later, I got what was supposed to be an 8×10 picture in the mail of me and the puppy raisers and Barley. They sent the wrong picture. It was of my roommate.)

What Happened with Barley:

I went home with Barley a little confused, but mostly happy. I did really like her and we had bonded in the dorms. After two weeks of me questioning how she (and all the dogs) were not as well trained as the GDF dogs, I was told that it is a difference in philosophy. Barley was very young when I got her and maybe had about 40 hours of training. GDB was a big school that put out a lot of dogs. They get them out fast and young with the very basics. Then people can work with them and customize them how they want to. The dogs are raw and need to be finished off. It’s better that the blind person do it, so we taught you how to train them. Ok, I could buy that. I don’t know if I agreed with that philosophy because blind people take off two weeks of work or school or life and you have to go back to work. It shouldn’t be such a reduction of function and such a mess of a dog to deal with every time you get a new dog. But, alright. Here I am. I’ll do it. When we left the school, Barley could basically guide with food rewards. She did not need too much correction and she did not know too many words that Mara had come to me knowing. But I was game to work with her and it never crossed my mind to end my time with her.

When I got home with the kids, all hell broke loose. My kids were not that bad, but they were four and I did have to back them off of just kind of smothering her with pets and attention. Then I bought her a crate so she had a place to go that they were not allowed to touch. But Barley was just unhappy in my house. She ripped up the carpet, she chewed on her paws and ate through her hair. She ate through multiple cushions in her kennel. She seemed constantly agitated and she never seemed to settle down and relax. At first I thought she would get over it in a few days, but it pretty much kept going on. She knocked my four year old down the stairs, not on purpose but just because she wanted to get away from him. He hadn’t done anything to provoke her. He was just dancing around the top of the stairs. I asked for advice, and was told to keep her on a leash. I thought that was ridiculous for a guide dog, but I did it. But it is really hard to function with a dog who is unhappy and doesn’t settle around your wrist all the time. About 2 months in, with no improvements, I decided to return her.

I was terribly sad. I was crying. And the woman who came to get her was completely unsympathetic and blamed the entire thing on me not telling them I was pregnant and not being able to handle a dog when I’m pregnant. I really did not think that factored in all that much, except that if she didn’t like my 4 year olds, what would she think of a baby who might actually hurt her by pulling her hair or something? That woman was one of the the most condescending woman I have ever dealt with and made an already hard event more horrible. Guide dog schools seem to always blame the handler and never think it is anything they could have done. They gave me a dog with a known problem with children. But yeah. The problem is that I am pregnant.

I called the next day to see how she was, and was coldly told that I could not ask about her anymore because I gave her up and had nothing to do with her. I was hoping maybe she could be placed with someone who didn’t have kids. But I knew that I might never find out what became of this dog I had loved and worked with and spent countless hours with for over ten weeks. Thankfully, about three or four weeks later, her puppy raisers told me that they had taken her back. She had been recareered.

Why? I asked.

“They said she barked too much,” said the puppy raiser.

I had never heard her bark, and she hadn’t either. Barley lived a good, happy life at her puppy raisers farm home. She died a little bit ago.

(I don’t have quite as clear of a time line on Barley. She lived with her raisers until she was a little over a year old. She was in training for 3 months. She was my youngest dog, at 1 year 5 months when I got her.)

This is a nice picture of Barley and my dad in my back yard.I don’t have too many pictures of her at home.

Overall Impressions:

I learned that all guide dog schools are not the same. I also learned that people have very little to compare to except some word of mouth because there are no hard and fast stats out there to show any quality indicators. I wanted to know things like: How many hours are these dogs in training for? What is the drop out rate before matching? What is the recidivism rate? What is a list of behaviors and commands/tasks that a dog should be expected to have upon graduation? What rights does a person have in regards to owning/returning the dog? It felt like, because we are the recipients of charity, we are not allowed to question. We are not allowed to complain. We are not allowed to have an opinion. Our job is to be grateful and be a ray of sunshine and have a tissue handy for our pitiful little tears.

But I also started to see a trend of trainers that just don’t have very high expectations for the dogs or the blind people handling them. The dogs seem to be trained for a very low-middle level traveler, a route traveler whose dog will only walk straight to the curb and avoid obstacles. They will learn routes and that’s about it. It all of the sudden was cruel to expect more from a dog, like that they could handle when you pulled a suitcase or a stroller, or that they might have to freestyle it and use more of an over-all cognitive, problem solving approach to mobility rather than just do some tricks for food. I thought at the time this was just a GDB thing. But something would happen soon that would spread the GDB philosophy all over the country.

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


See also:
What’s the Matter with Guide Dogs? (Chapter 1: What Happened at the Airport?)

To understand why I am concerned about what is happening with guide dogs now, you have to have some understanding of what my experiences have been in the past. I have now been to guide dog training 4 different times and 3 different schools. I’m going to review these experiences one by one to enable a little compare and contrast each school, but also to look at changing trends over time.

My ID card from GDF for Mara, my first guide dog. From 1993, this is just a laminated card with a law statement on it with a glued in photo of Mara and I.

My first experience with the guide dog life as a blind person was 30 years ago, when I got my first guide, Mara, from Guide Dog Foundation for the Blind (GDF) in 1993. This is also where I met my husband, and where he got his first guide, Jats. Thirty years ago is a long time to remember things, but since this was our first guides and the experience was such a huge one in our lives, I actually remember quite a lot of it. I have also looked up some information using old records, pictures and journals.

Why I picked GDF:

I actually sort of approached this like I was choosing a college. I wrote to every school and got information. I threw out the ones that were too patronizing and custodial at the get go. For example, Guide Dogs for the Blind said that I needed to find a volunteer (perhaps a Boy Scout) to walk with me up to a mile a day for the three months preceding my class to get me in shape. I already walked probably 3-5 miles a day just walking to my college classes on UNL east campus from my apartment on 51st and Vine Street in Lincoln, Nebraska. I then called each school and interviewed them. I also called and interviewed people who had dogs from the schools and listened to other word of mouth. One couple said good things about their school but everyone else said their house was full of dog piss and shit stains. So that was out. No one said anything bad about GDF. I ended up applying to two schools, Guiding Eyes for the Blind (GEB) and GDF. Guiding Eyes sent a rep out to visit me, which I found annoying but I complied. I remember him saying my apartment was so clean, and I was like…where must you go to think this is that clean? GDF sent out no one, and that made me happy. I had a telephone interview.

The Training:

Back then, the training lasted 26 or so, days. We didn’t even get our dogs until the third day. What I remember most about the training was how thorough and tedious it was. Every single thing you did had a procedure to it. The first thing I had to do after meeting my dog was to walk down a hallway and sit in a chair. It took FOREVER! And I wondered if I would ever get up from that chair. But my dog was nice and clean and beautiful, happy and friendly. I fell in love with her right away.

There was a lot of downtime at this school. There were ten students in the class and two instructors. John was the director of training and was obviously the boss. Doug was new, just off of his apprenticeship and this was his first class. The class was divided in half, so a 5:1 ratio. Nik and I were assigned to Doug. The first few days we stayed at the campus and trained on their training blocks. Then we would pile into two vans (a John van and a Doug van) and go off to different places every day. The tasks spiraled out from simple to more and more complex. The commands used and the procedures were consistent among all of us and were explained in detail. There was a way to open a door, get in a car, ride an escalator, take your dog out to the bathroom, use the leash, etc.

These dogs used no food rewards. In fact, except for their meals, any food was strictly prohibited. All work was done with commands and tone of voice. There were some hand gestures, too. And leash corrections. Lots of leash corrections. A leash correction uses a choke chain and you do a sharp, quick jerk on the leash that snaps the collar around the neck of the dog. The dogs were 70-80 pound labradors and had super strong neck muscles. I was constantly being told my leash corrections were too wimpy. Doug, who was probably 6 foot something, would hold his hand over mine and yank HARD, snapping the leash quickly and tightly. Mara would immediately respond to his corrections, and only sometimes respond to mine. Not every misbehavior needed a severe leash correction like that. You could do just a little tug to get the dog’s attention, or even just a small shake of the harness handle would do it. But if your dog was off the rails, you would-in one movement-drop the harness handle and yank quickly and strongly back with your wrist on the leash. This dropped handle and snap would definitely get the dog’s attention.

Everything was done with the left hand. The leash went around your left wrist and you held the harness with your left hand. Your right hand was always free. If you dropped the harness, even accidentally, you would still have the dog’s leash around your wrist. Leash corrections were taught as a last resort. The first resort was the tone of your voice and lots and lots of praise and pets. Then you might move to a stern voice and a little leash tug, then you would go all out leash correction. The dogs were big and strong.

The dogs were also taught to guide without harness. The first few days, we went around in the building with our dogs guiding us on leash only. The commands used were consistent whether your dog was in harness or not. Leash guiding was not something you would do for long periods or all the time, it was more of an indoor thing or a “just to the mailbox” thing. So the dogs had some context for when they were off leash and not working vs. guiding on leash. You held the leash close to the dog’s neck when guiding on leash. Nik loved this, I never gave it much thought until this year.

But they were wicked smart, too, and they liked to guide. They did intelligent disobedience very well. This is when the dog overrides a command of a blind person because the command could put you in harms way. They were not all that sensitive in that if you scolded them, they recovered quickly and moved on. They all could find things–or “target”–already when we got them, and this seemed like magic. They were great and helping you find the door outside, because they always were glad to go outside. I thought this would be great if I was ever in a fire. They found curbs, of course. But also chairs, doors, elevators, stairs and “left/right” which is when they find a path you are looking for on the left or right. We moved from walking on little park paths to going to subways and walking on sidewalks in Queens.

The expectations for the decorum and manners of these dogs was super high. My dog barked one time, when a random person on a tour came into my room suddenly. I had trainers come running in concern and asking why she barked and what was the matter because it was so rare. I was scared she would get into trouble, but because the circumstances were so weird (a total stranger busting into my room) they let it go. But these dogs never barked. They never fought with each other. They laid almost perfectly still under you at meals and at our class meetings, never bothering any of the other dogs. They would get on the bus and go right under the seat without you even doing a thing. They were not perfect and made mistakes, but in general, this is how they came to you at training.

This is our class picture.I am at the far right and Nik is 6th from left. John and Doug and hiding behind us and the house behind us is the dorm we stayed at. Right in front of the driveway in the foreground was a strip of grass and a fence where I would do my zoo animal style pacing.

The Facilities:

I have laughed at people who only go to the schools with the nicest resort-like facilities rather than worrying about the quality of the dogs, but I have seen how facilities can play a part, so I will talk briefly about them. The GDF dorm facility at that time was like living in a large house. There was a living room when you walked in the front door, there was a dining and kitchen there, a basement with sort of a rec room in it and a TV, and two wings with 3 bedrooms each. They were divided into a mens and woman’s wing, and we each had a roommate. Each bedroom had a bathroom and a door to the outside where you took your dog out. The grounds had a couple of practice city blocks, a small dog run, and a garden. There was also a kennel and an administration building. The facilities were perfectly acceptable but not fancy. It felt a lot like a house. The two vans were just like Chevy passenger vans and we spent a lot of time in them. There was no other facility that we spent time in. When we were out, we either stayed in the vans or just outside of them in folding lawn chairs, or we had arrangements to stay in nearby buildings, mostly church basements with church volunteers who would bring us snacks.

The Level of Custodialism:

The custodialism back then was rather high. We were not allowed in each other’s rooms or in the case of gender, in each other’s wings. The overnight babysitter was nosy and lurked around, getting on Nik’s and my case for being up later than about 10pm, even if we were just sitting quietly talking in the basement. We were not allowed to use our canes at all, even in the first few days when we didn’t have dogs. Nik was moved the last few days to John’s van because they thought we were too close. (I admit, Nik and I spent a lot of time together probably making googl-y eyes at each other and being annoying, but we showed up for every training thing we were required to, listened and did what we were told, did not have a sexual relationship–cuz no privacy whatsoever!–and did not go into each other’s rooms or interfere with each other’s roommates. We were exceptionally good kids.) When I say there was no privacy, I mean it. Once I jumped out of the van and headed for the shower because I was hot and sweaty and thought we were done till dinner. It turned out there was something we were supposed to do in the living room that I hadn’t heard about. I stepped out of the shower and a male trainer was banging on my bathroom door–I don’t even think our bedroom or bathrooms had locks–and was telling me to get down there already, even if I was naked. John started calling Nik a “fat boy” and upsetting him with little insults about his weight and his accent. A classmate of ours brought his dog back to retire with its puppy raisers, and I have never seen a more brutal scene than them taking the dog from him harshly and unceremoniously from the van when he arrived from the airport, never to be seen again. That was what made me decide that I would NEVER give my dogs back to these people. We were not allowed to go out of the house without permission. and we really never got permission. It was one of my first experiences with feeling really jailed and like the walls were closing in on me. I used to do stuff that probably looked batshit. I would put on headphones, listen to music and ASL sign the lyrics, while pacing back and forth in the front yard area by the fence in a kind of trance, trying not to jump the fence and make a run for it.

On the other side of that, though, was that after the first few days of individual training walks, we started going out as larger and larger groups. So, with that 5:1 ratio, we were able to have some time and space to ourselves to figure out how to trust the dogs and learn their mistakes. The trainers would be “around” but all ten of us were going on routes by ourselves with just each other to check in with and the trainers might come around and ask how things were going every 10 or 15 minutes or so. I walked a lot more by myself this training than I ever would again. I think that was great for really building trust with the dog.

Initial Problems:

Every guide dog comes home with some adjustment issues. There are always a few problems to work out. A couple of things stand out from my experience with Mara. The first was that she threw up all the time the first few weeks. She threw up in Target, in the mall, in the movie theater, in my house, on the street, everywhere. In the first couple of weeks, once a day at least, she would throw up. The vet couldn’t find anything wrong with her. She had not changed foods. It could have been anxiety, the water, an allergy, who knows? After a while, this problem took care of itself and she stopped throwing up.

I also had a bit of an issue with my apartment building. I lived in a big complex where there were several buildings surrounded by idiosyncratic parking lots. There was no way to tell her where to go to get out! They never taught us to walk from your door to the street through a bunch of mishapen parking, cars and buildings. I could do it with a cane, but was trying to follow all of the rules and procedures so had no idea how to do it with a dog. I ended up just teaching her a path with my cane. Which is when I decided that canes and dogs can make great combinations and their whole cane prohibition was bunk.

The other problem she had that we dealt with a lot in the first year were dog distractions. If she would see a dog on the street, she would slide off the cracker. She was actually, at times, hard to control. Again, I had to work hard to do leash corrections that were strong enough for her to care about them. I would say it took us maybe a good year to eliminate most of her issues with dog distractions. She only wanted to play, but it would throw me off course. It was also embarrassing to have to be that violent with her to correct her that strongly. People would think I was a terrible person. But I was doing what I was taught.

Graduation:

GDF did not have an official graduation ceremony. We had a day near the end where we met in a reception-type event at the house with our guide dog raisers and sponsors. It was very casual and light food was served. The dogs did not attend with us, which was a bit weird. I absolutely do not mind meeting with puppy raisers and thanking them, and I understand the need to show sponsors the end product of their contribution as well and show gratitude. Although meeting new people is a bit awkward, I felt like this event was fine. We had an exit interview with the CEO.

I believe this was the picture they sent to the puppy raisers. I’m sitting on a bench with Mara outside.

Guiding with Mara and Jats:

Both Nik and I will say objectively that Mara and Jats were the hands-down best guides. They had wonderful decorum. Despite their couple of weak spots, they hardly ever needed correction. They did not need to be told a lot of information to know what to do, and they were very keen on the context of the situation and generalizing from one situation to another. They learned how to find bus stops and classrooms after only 2 or 3 lessons. They were sharp until the end. They were friendly but not over sensitive. They understood their job and liked to do it. We had so many adventures with them and went to so many places and travels. Yes, they made mistakes, but mostly we were able to travel anywhere we wanted to go with them.

Nik and Jats in the “living room” of the dorms at GDF.

Mara’s timeline:

From the best that I can put together today (it might be a bit off…):

Born: September 15, 1991. From what I recall, puppies stayed with their mothers at the school’s puppy center for about 9-12 weeks.
Puppy raisers: November 1991 to February 1993. Puppy raisers attended obedience camp at the school every Saturday and had assignments throughout the week.
In for training/kennel: February-June 1993. Her trainer was Tim. He had her the whole time until class. She spent about 3.5-4 months in the kennels.
On class: June 1993. She was 1 year 9 months when I got her.
Working Guide: July-1993 to about September 2002. 9 years, 2 months, although modified schedule in 2002. Retired due to hip/orthopedic issues.
Died: June 4th, 2004. 12 years, 9 months. Euthanized due to uncontrollable hip joint pain and lack of joint function.

Overall Impressions:

Although I found out I do not enjoy the constraints of guide dog training, this was the most thorough, complete and organized training I had ever had. There were some annoying aspects of it, like when we would have to sit around FOREVER to “learn” how to assemble and disassemble the harness when I could do it by feel immediately in 2 seconds. some others couldn’t, which is often caused by blind folks never getting opportunities to do anything mechanical with their hands their whole lives. I understand that all people are different, but some things were taught at the lowest common denominator. If you said anything, they would say “oh well, you can see. Other’s can’t.” While I do understand that usable vision does give me some advantages, blindness does not make you a bad mechanical person, lack of opportunity does. Nik, who is totally blind, could also figure out the harness in seconds. So that got old. But overall, the training was concise, consistent across dogs and trainers, the dogs could do a LOT of things and there were very high expectations of the dogs. No one balked at the idea of pulling a stroller or grocery cart behind you. In fact, that is where I learned to do it. No one excused the dog’s bad manners or squirrelly behavior. Expectations were very high for the blind handler and the guide dog to work together at a high level and be very presentable doing it. Even though I have made modifications, mostly in vastly decreasing leash corrections, this training was the basis of all of my guide dog work for the rest of my life.

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

Mia, a black lab guide dog, is a sweet girl with a lot of potential. Despite our crazy airport trip, I am very far from giving up on her yet. Although this was way more work than I expected to have to do or have ever had to do before.

Nine years ago exactly on this day, I took a direct flight from New York to Portland with my brand new guide dog, Marra. She shook a bit in fear on the take-off, but after that, settled right in to her floor space for the rest of the 6 hour flight. When I got off the plane, I had to maneuver my way through the airport (that I knew quite well) get my luggage from baggage claim, find the light rail stop, and take the train a few stops to then walk to a new hotel I had never been to, where I had planned to meet my husband and his guide dog, Sully. It was around midnight, which meant that I could not see at all with any of my remaining vision. We planned the hotel rendezvous where my husband had been presenting at a conference so that I wouldn’t have to go so far at night and so the dogs could meet on neutral territory.

Marra was excited, and a little distracted. She had only known me for 14 days, but it had gone pretty well. She impressed me with her skills of guiding and finding seats and doors and elevators when I had been to guide dog school with her in New York at Guide Dog Foundation for the Blind. It’s common for new guide dogs going home to a new place to be a little nutty as they adjust. So, that is why we made my first totally solo trip alone with her relatively easy. Find the same train I have found a million times before, go a short distance, walk about two blocks. If I got stuck anywhere, my husband said to text him and he would come find me and walk me in. But even though she was excited, Marra guided ok. I remember stopping a couple of times just to calm us both down and collect ourselves. I was dragging a suitcase behind me, but she was fine with that. We went a little bit slow and made a few minor wrong turns when trying to get to the train station. She had not been there before so it was expected. But she guided me there and I got there ok. When she met Sully, they were both very excited at first. We met on the street, and they completely lost it and were jumping around each other in their harnesses. But within minutes, we got them both to heel and went to the room. In the room, we let them off their harnesses and they went crazy, running around the room, rolling around with each other and making growly noises. After about maybe 10 minutes of this, Nik and I had had enough of it and were afraid it was too loud. We told them both to cut it out and they did. That was that. We all went to bed. Nothing of interest really happened the rest of the way home the next day as far as guiding. Marra just guided. I taught her a few new things during the next few weeks, and she settled down some, but that was it. We were a successful guide dog team.

Fast forward to this last weekend. I brought Mia home from a 6 hour flight from New York, where I had spent the last 2 weeks learning to work with her at Guiding Eyes for the Blind. I was nervous about the flight because I was nervous about Mia in general. It was obvious she did not have the same skills and good behavior as my other two GDF dogs. But I wanted to give it a go. My husband also got a new guide dog with me at this time, and he had some of the same reservations. But his dog was so friendly and good natured that it was hard to not fall in love with him. The flight experience with these dogs was totally different.

It started out when we got to JFK in New York. Our driver did not give us a lot of extra time for all the stuff that is required when you are blind traveling with guide dogs, so we had no time margin when we got there. I had to try to follow her and my husband to keep up. My husband was using her as a sighted guide, had his dog and his roll bag. I had my dog and my roll bag and was trying to follow them. My dog was just not guiding. She was weaving and darting all over the place. I had no hands to spare to give her food rewards, a leash correction, or anything, and no time for do overs or stops. I had to keep going or I would lose my guides. I felt like I was just walking into nothing…or chaos. Like think of walking in a super busy airport but with your hands tied behind your back, something is jerking you around and off course that you can’t control, you have very little vision and very little hearing–oh, and you have to hurry and follow people in front of you. While people are walking between you and yelling. And while your guide dog has never been taught to “follow,” one of the most useful commands out there. And then, for the best part? Your dog decides to stop in the middle of JFK and take a shit right on the floor. All I could do was stand there and yell for my husband. I couldn’t believe this is what they thought was acceptable to send a person home with a guide dog. Although our staff person cleaned up the poop for me, she said very casually, “oh all the guide dogs do this when they get here. They are just so overwhelmed! hahaha!” This made me really furious. It came from a person who probably gets complimented all the time for the wonderful work she does for the blind. It came from someone who has never had any experience being scrutinized as a blind person, and a guide dog user by people critical of dogs. I cannot have my dog pooping in the middle of an airport and get away with it. That is not how blind people are treated on average. I cannot just laugh it off.

We were just in time to walk on the plane, and the plane ride was fairly ok. The dogs both did alright, although my husband’s dog was a bit needy for attention. We also had to wait an extra hour at the tarmac for an open gate in Portland, so by the time we got off the plane, the dogs had been sitting there for nearly 8 hours. Our first priority was to get them outside for break time.

If there had been an airport assistant there, I would have used them, but they weren’t there. And as every blind person knows, you can wait up to 45 minutes for an assist. Since I have gotten myself out of this airport countless times before without any trouble whatsoever, we decided to go ourselves. But our dogs were absolutely bananas. Like more bonkers than any dog I had ever had, including my guides and my childhood miniature dachshunds. They were not guiding, they weren’t even walking, really. We thought that getting them outside was maybe the thing that would just let some of their pressure off and get them back to being under control. Right away, my dog darts with all her strength over to a man playing live piano. I did a hard leash correction and in my meanest dog voice, commanded “leave it!” But my dog either does or doesn’t know “leave it” (no one at the school was sure.) So it did not do any good, for my dog. But it freaked the piano player out so much he stopped playing and darted off his piano bench. I have not done such a public and violent leash correction on a guide dog since the early 90s (more on that in another post) but I had not forgotten how embarrassing it is or how much it makes you feel like an asshole. I apologized to the piano player and assured him it was safe to get back to his piano.

We walk through the airport and I think it is going relatively ok. Since Nik’s dog does not know how to follow either, I am playing the part of yelling directions at him. But then he yells, “Lisa, Wait!” And I turn around and a woman is pulling tissues out of her purse and administering first aid to my husband’s head. Cobey, his dog, had just rammed him into a cement block wall. Blood was dripping off of his forehead. I know from experience that Nik is a bleeder. a small cut produces a large amount of blood and it takes 20 or 30 minutes to clot with pressure. I knew it probably looked way worse than the actual cut was. Still, we needed to stop the bleeding, it’s a mess, and the dogs still need to go outside. I asked him what he wanted to do, get to a bathroom? Find a paramedic? What? He said he just wanted to get the dogs outside so maybe he could get a guide dog back and maybe get a cane or something because this wasn’t working.

The woman with the tissues, who was beyond worried about our predicament and could not believe that our guide dogs were actually real, walked with us outside. The dogs both relieved themselves, and we tried to settle them down a bit. But they were still not really guiding. We decided that Nik would wait where he was with both dogs and I would go in to baggage claim to get our bags with a white cane. Then, instead of taking light rail and walking a half mile to our house like we always do, we would take an uber.

So, I went back into the airport, found a few people to help me find the right baggage carousel, and waited until there was almost no more luggage left so I could easily find mine. Since I had a cane and two roll bags, I could not walk back myself without help. So I asked another person to assist me and we walked back to where Nik was standing. Before we got there, the man exclaimed “Jesus Christ!” in alarm. And then explained to me that Nik had more blood running down his face.

Nik looked like an absolute horror show. And people were starting to balk at the sight of us and our black dogs that were busy just wrestling with each other. I can only be thankful it was Halloween season and maybe people might have thought we were doing a prank or a costume or something, but people really stopped wanting to help us. This is a dangerous place to be as a blind person, it starts the alarms of people calling the cops on you. We just wanted to get out of there. Nik had been trying to find out where to catch an uber in the airport while I was gone, and we made our way to ground transportation looking for the ride share pick up area.

But when we got where we thought we were going to be, a van pulled up and some people got out. The driver came back to the van and we asked him if we were in the right place for ride share pick up. He said this was hotel shuttle pick up. He just drove some people in from a hotel. We were asking him about directions to ride share when he said, “I don’t mean to be insensitive, but I’ not sure ride share will pick you up based on how you appear right now and with these dogs.”

We knew he was probably right. One dog is iffy with ride share, two are worse. two that are not behaving well is a catastrophe, and add a blind man who looks like he has been ax murdered and you are not getting in anyone’s car. I was so done, though and this man had been pretty nice to us and listened as we explained our crazy situation. I asked him if his airport hotel would take us there and then we could regroup. “You mean you want to get a room?” He asked. The thought of a room with a bathroom and a nice warm bed just a few minutes away was more than I could resist. “yes,” I decided. “We will rent a room.”

“Ok, I am going to run you over there but only you (he points at me) can go into the lobby, ok?” Deal. Anything. Fine. Just please get me out of this airport. So we loaded up and he drove us there, He opened a little side door to a stair well and we put all of our stuff there with Nik and the dogs, then he put me back in the van and drove me around to the front lobby. It was all very clandestine and by that time, I was even laughing a little. I got us a room and the key and then took about three trips to get us and our stuff and our dogs to the room.

Nik washed up and changed his clothes while the dogs went nuts in the room. Mia started barking a lot, so we had to tie them down on separate ends of a couch, both of us sitting with our respective dogs on the floor and talking in soothing tones while petting them gently. They did finally calm down and were quiet. We laugh/cried about the last time I brought a brand new guide dog to a hotel and how different this was and how basically excruciating and confusing this whole guide dog trip had been. Then I slept for almost 17 hours, except for a couple of breaks to take those dogs outside and eat.

And that is the story. It really happened. It’s here so that someday I will look back and laugh at it.

Someday.

But for now, I have FEELINGS and THINGS TO SAY about what is going on with guide dogs and guide dog schools. It’s always a little scary to say anything at all negative about guide dogs, especially when you are at the mercy of the schools and don’t officially own your dog yet. So, I am also going to document my journey with Ms. Mia on instagram (@guidedogmia) so that there is no doubt that she is being well cared for and loved and I am working with her to improve her adjustment and get her skills up.

I am mostly confused by it all, so I don’t claim to have the answers as to “what’s wrong.” I just know something is and I can only speculate on the what and the why. I can only share my own experiences and thoughts and am quite familiar with Nik’s experiences and a bit familiar with many other blind guide dog user’s experience. I don’t know if it is just certain programs or if it has more to do with the passing of time and younger guide dog trainers not having the same skills as the older ones did. I do think that they don’t know a lot about blind folks and how we travel, live and use guide dogs and other navigational and mobility aids. I don’t think there is one “villain” in this story. I think there are many trainers, volunteers, and staff who are nice people who mean well and do the best they can, but are not getting what they need to do a good job. I think the problem is something overarching. Some has always been around and others are new. I don’t even know that I can find the answers.

But I do know that I am not the only one who has had these experiences and I do know that it is incredibly hard for blind guide dog users to speak up. We are almost powerless in this equation of guide dog staff, donors and sponsors and users. We are not the consumer, we are beneficiaries of charity. We are the product and the poster children that are used to raise funds to keep people employed and schools open and dogs produced. We don’t have a lot of say in any sort of accountability for these largely unregulated nonprofits that we depend on to provide guide dogs. Guide dogs that, if not trained correctly, can get us kicked out of housing or public accommodations, get us excluded from getting a job opportunity, and literally get us injured or killed.

I am going to take a few posts in the next few weeks to share my experiences with all my guides and the schools they came from. I invite anyone who has anything they would like to share to feel free to share in the comments or write me privately if you’d rather. I don’t know if any grand conclusions or solutions will come of this, but I do think that people need to start talking about it or it’s only going to get worse. Our airport story is a little dramatic, but we were put in a situation that no blind person should ever be. I will talk about why I think it happened, including what we could have done differently or better as well. But the two experiences I have had getting home from New York (I’ve actually had 3 in total) show the stark differences between the initial training of my guides over the years.

As for Mia, I am still Team Mia and still committed to working with her. I will talk more specifically about her later and what I theorize has made her like she currently is, but she is a nice, sweet and smart dog who I believe has a lot of potential. Although I would have never believed in a million years that our first lessons home would be “house breaking” as she has already had more accidents than any guide dog I’ve ever had in the past *combined.* But we are going to try to work through her adjustment first and then see how far we can take her guiding. She will be loved and cared for no matter what.

Writing Homework Series: My Visit to the PT House

This assignment was supposed to be a fish-out-of-water, visit to another culture type of description. I actually had just been to the PT House, a hotbed in the Deafblind community, a few weeks prior so it was perfect. Even though I am DeafBlind, I did not grow up in the culture and I do not yet have the skills to thrive in the community. But I always enjoy my visits there and I am always grateful to be invited and accepted there when I get the opportunity.

The PT House is famous in my world, and although I had met with individuals from this culture, I had never actually been to the PT House itself. But I was in Monmouth, Oregon for another event and had gotten myself invited to a party there. I had a headache, and I was nervous. I knew communication would be a struggle and I did not feel well, or that my brain was in it’s a-game. Still, curiosity got the best of me, and I was in town. I forced myself to go.

I had set a marker on the address, so as I walked down the street, I knew I was getting close. But my guide dog assertively turned up a driveway toward a house. She had never been there, but she knew I was looking for something and she felt very, very strongly that this is the house we wanted. I was surprised by her absoluteness on this, but then I would find out there were other guide dogs inside, and I swear, guide dogs know the aura of other guide dogs more than even regular dogs. In any case, she was right, it was the right house. 

Someone opened the door but there was no sound. Just some shuffling around sounds and a few different currents in the air shifted as people walked by. I sucked in my bravery and signed in my extremely basic ASL and finger spelling, “Hello! My name L-I-S-A, and here (I gesture to my blind husband) partner name N-I-K.” 

Did anyone even understand me? Or know I was there or who I was? I didn’t know. I worried about Nik, who was totally blind and knew barely any ASL and although I had taught him to finger spell like 3 or 4 times, he always forgot. The figure in front of us put an arm on my shoulder and started walking. I grabbed Nik’s hand and like a train, we followed her through a pleasant suburban house. 

When we got into a sort of open area, she left us and we both stood there, kind of not knowing what to do. There were a lot of people in there and they were all clustered together in small groups. There was almost no sound, but you could hear an occasional vocalization or a deaf accented word or two; sometimes the silence erupted with laughter. Our bearings were further shifted suddenly when my guide dog, who was still next to me on her leash and in harness, was bombarded on all sides by three different dogs. I was thrown a bit off balance, as was she. I reached down and there was just a swarm of soft furry goofiness. One dog was calmer and older. It had the guide dog aura, and its fur was stiffer and thicker. The other two, though they felt like Labradors as well, were moving like young puppies and were soft and floppy. I started laughing and loudly said something like “PT Dog Party!”

This was loud enough to make some of the people aware that new arrivals were among them. All of the sudden, I was surrounded by people who had their hands on my shoulders or who had grabbed my hands. It felt physically overwhelming and my instinct was to recoil a little, but I did not want to practice “distancism,” a word Deafblind folks use to criticize how anti-touch our society is. Even though I am very much a product of that society, I understood their need to touch me was their only way to communicate. I was on their turf and I will do as they do. I took a deep breath and made myself calm down. I signed “wait-minute-wait” and she let me have my hands back. Another person was tugging on my coat, and after a minute I understood that she was inviting me to give her my coat. I slid it off and handed it to her. She reached out to my hand and signed something I could not understand.  I guessed through context that it had something to do with where she would put my coat, so I just signed “thank you” into her hand. That seemed to satisfy her and she left me. I could not keep track of what had happened to Nik by this time. I knew he would be a little deer in headlights here, but he could deal. I knew I did not have to babysit him and he would figure something out to communicate with people. He was good that way.

The dogs were all still a bit nutty. I was reaching down to see what was what and someone took my hand and signed something into it that I didn’t get. I didn’t know what to say back so I just was still for a moment. The man took my hand and put it on my dog’s harness. He made a slight tug on it. Ok, he was telling me it was ok to take the harness off and let her run free in the house with the other dogs, which would make things easier for me. I don’t let my dog go free in people’s house unless I get permission. And I decided this was permission. I took her harness off and she and all the other dogs shot off into the darkness. A burst of laughter could be heard as the ball of dogs ran through the clusters of people. The man took my elbow and led me through the room. We stopped and he placed my hand upon the wall, then slid it down to a sort of baseboard that was about 2/3rds down the wall. We were both bent over by this time with our hands on the wall. He guided my hand around where I traced the baseboard around. It made a rectangle about 12 X 18 inches. Then, he picked up my hand and placed it in the center of the rectangle. I felt a plasticky vinyl panel that swung open both ways. I could feel the cold winds of the February air when I pushed it out. “Dog door!” I signed into his hands. He reached for my forearm and patted it, which in ProTactile means, “yes.” Ok, he is showing me that my dog can go outside. I wanted to ask him if outside was fenced, but I couldn’t think of the sign for fence. So I took his palm and fingerspelled F-E-N-C-E and then made a ? sign on his palm. Another pat on my arm. I signed “yes, ok” in his palm. 

All this was communication, if not that complex, so I was like…ok. I can do this, but I feel like I am using every brain cell. Every time I moved, another deafblind person would reach forward to me at chest level, looking for my hands. My breasts were being swiped more times at this party than a 1960s stewardess passing out cocktails. But to be fair, I had swiped a few sets of breasts myself accidentally, and no one was yelling “Me, Too!” here. It was all just accepted. It was intimate, but it did not feel sexual in the slightest. 

Here, I was the anomaly just like in the regular, sighted hearing world. But the difference was that these folks did not shun me, they dealt with me. The vast majority of Deafblind adults have Ushers syndrome. They were born Deaf and grew up in Deaf culture with ASL, then they started losing their sight in their teens and 20s. They had come together and developed their own language, which they called PT or ProTactile. It was first developed by Jelica Nuccio, a Croatian-born deafblind woman who got tired of deafblind folks having to communicate with each other through ASL interpreters. In Seattle, where she was the head of the Deafblind Services Center, she threw out the “terps” and made everyone figure out how to communicate directly with each other. At first, this was a version of tactile ASL. Over time, the more visible aspects of ASL, like placing a sign in different spaces in the air, became tactile signs. PTASL became a different dialect of ASL. But after two decades, PT has developed into its own language. Jelica owned PT House in Monmouth, where I was. She had designs to develop a Deafblind community of PT communicators in this little town without much traffic and where Deafblind folks could safely walk around. PT House had certain rules: Touching anything was ok, PT reigned supreme, and there was to be no interpreters and distantism. It was a bit of an insular clique. It was the “cool kids” of Deafblindness in the country. Jelica, who had spoken openly against Helen Keller National Center for being an overbearing, patronizing monopoly who paid high salaries and did very little actual programming for their constituents (much like Canada’s CNIB!), wanted the PT folks to take care of their own. Jelica was a legend.

I had known Jelica for over 20 years and I had always admired her. She was charismatic and self-determined and smart. But I was not in the PT clique. I was the rare breed of being born blind then lost my hearing. People like me and the culturally deaf folks got along and were allies, but we did suffer a communication and cultural gap. We had all the great blindness skills, but no ASL or PT. They had all the good tactile communication skills, but sometimes were still baffled by blindness. Jelica had always been kind to me, but I wasn’t “OF” her people exactly. The fact that I got invited to this felt like a bit of a test. I think they wanted to see how I would do without an interpreter and on her terms. I had warned her that I wouldn’t be anywhere close to perfect, but that I would absolutely try my best and not give up.

Now, in her house, I had not given up. But I did sometimes feel like I was drowning. I had part ASL, part PT, part print on palm, part voice/speech conversations with many people. It was ok, but it was hard to get past the simple small talk of when you first meet someone. “My name L-I-S-A, how you how?” I said over and over. “I good, happy here meet you” I signed. Then…it went a little cold. And even that was taking all of my energy. I decided I needed a little break and found the sliding door to an outside deck. I decided I should check on my dog.

I stepped out into the cool winter air with no coat. But it had been so hot inside with all the people in close proximity, it felt good. Dogs came running up around me, and I felt relieved that these particular party guest just expected me to be able to speak dog. Amongst the wiggly fur, I managed to find my dog’s familiar wiggly fur, and she seemed happy. But my reprieve was not for long. A set of soft hands touched my arm. I braced myself for another broken conversation. I turned toward her and fingerspelled my name into her hand. She started printing big block letters on my palm. D-A-N-A. I wasn’t sure why she did print on palm instead of finger spelling, but I had heard that some PT folks reject ASL altogether and only want to do things the totally deafblind way. I just went with it. But then she signed “dog” to me, which was a tactile version of ASL, a snap in my palm, so who knows? She did the snap in my palm again, and I patted her arm. Yes, dog. I understand. Then she took both of her hands and she ran them rapidly all the way up my arm and on my upper chest and down the other side, then she stretched out my arm and made her hands go into a big wiggly pile in that hand. She removed her hands and took one and made it into a claw shape and put it on my shoulder and did kind of a scratchy thing with it, which I knew meant “laugh” in PT. I could tell she actually was laughing. Oh, I get it. She is describing to me how the dogs are running around the yard and ending up in a big pile, which she thought was funny. I wasn’t sure if she was actually seeing or hearing or just imagining this, but it was accurate to what the dogs were probably doing. This was a large backyard by Portland standards, which are mostly postage stamp sized. I only knew what the dogs were doing when they occasionally rushed up to the deck by me and I could feel their claws tapping on the deck and waking up the deck boards with their happy dance. I could imagine it too, and it was funny.

Dana and I eventually got cold (she takes my hands and shivers them back and forth) and went in. I decided to see how Nik was faring, and he had managed to get out his braille display and iphone and was having whole conversations with people like that. He had earbuds in his ears and would use braille screen input on his phone (a way of writing braille with a virtual keyboard) and his words would show up on the braille display which people would read, then they could type back to him on the braille display and he would hear it in his airpods. I decided I could get deeper conversations if I did this, too, but he had my stuff. 

It took awhile to get him to give me my stuff and for me to set it up. People there expected that your hands would always be available to talk to them so it could be hard to get a moment to even pair my devices and turn them on. I had an iPad with an external QWERTY keyboard and a braille display. But I could not just listen to what they typed like he did. So I either had to pass the braille display back and forth or see if they would “type blind” on the QWERTY. It seems they were not used to the type of braille display I had, a cheaper one called an Orbit has a bit of a different button configuration. So much time was spent trying to figure out how to teach them which button was backspace and pan and things like that. There were moments when I was using ASL, fingerspelling, print on palm, speech and braille at the same time. My brain about exploded and I could feel the energy being sucked out of me. But eventually, I was able to have a conversation with a few people that way that went beyond “how are you? Good, and you?”

What I always appreciate most about the “capital D-Capital B” DeafBlind community, even when I don’t communicate all that well with them is that they always will engage with you and they never give up. They will try anything and will keep trying. They don’t just cast you aside because communication isn’t easy and within “normal” social rules. They are the epitome of inclusive. I need to take breaks and do parties like these in short bursts until my own PT skills get better. But I hope to return again to PT House. 

I

Linking the Chain: Seeing My Mother in My Children

The Maroon Bells in Colorado was a favorite vacation spot for our family. My mom’s ashes were spread there.

Today is the 20 year anniversary of my mother, Diane’s, death from a brain tumor at the age of 55. Sometimes it feels like she was never here. Except for myself, my sister, and my mother’s siblings, sometimes it feels like no one else ever knew she was alive. Except for her obituary, there is almost no evidence of her on the internet. She doesn’t even have a gravestone marker. Her ashes were spread in a beautiful, but somewhat inaccessible place–the Maroon Bells of Colorado. She never met my children. They only vaguely understand who she was, despite my attempts to share stories about her. She only met my husband (who was not my husband at the time) briefly in a sort of tension filled 5-minute meeting. At times here and there, it feels like she is a figment of my imagination, only shared with my sister.

But then I always remember the words of Eva Schloss, who was a holocaust survivor that lost her father and brother in the concentration camps. She talks about the words of her father that she always remembered and tried to always carry on: 

“I promise you this. Everything you do leaves something behind; nothing gets lost. All the good you have accomplished will continue in the lives of the people you have touched. It will make a difference to someone, somewhere, sometime, and your achievements will be carried on. Everything is connected like a chain that cannot be broken.”

Erich Geiringer

And then I look around, and I see her everywhere. She is inside my head. She is in the very walls of my house. She is in my children. And despite his 81-year-old somewhat impaired mind, she is still in my dad. The chain links are connected in numerous ways. My mother was a very private woman, which has made it hard to write about her without a lot of guilt. But I also feel like I could do more to sew a tapestry of who she was, each thread may add a little link in the chains I pass down to my children. 

To understand my mother, you must appreciate where she came from. She grew up in Council Bluffs, Iowa in hard circumstances, surrounded by alcoholism, domestic violence, and poverty. As the oldest child, she often felt a responsibility to take care of her younger 3 sisters and one brother. She tried to fill in gaps that her parents were unable to fill. Sometimes, when her younger sister had trouble in school, she would be called in by the principle to intervene because her parents were not available. Sometimes, when there wasn’t food in the house, she would go out to buy it with money she earned from part-time work. Sometimes, she had to intervene with social welfare offices to make sure the food stamps did not get cut off. She was always honest about her past with us. She never cherry-coated it. I would visit some of my relatives and see some of the alcoholism and dysfunction myself at times. Because she was honest with us, it helped me to realize from an early age that it was dysfunction and not how life should be. I knew early on some of the warning signs of men who were verbally and physically abusive to women, people who drank too much and how that impacted their lives, and also how blatant and abnormal racism and sexism was. By being honest with us about how it was, we had a way to interpret it and understand how it could be. It helped my sister and I to be able to set a higher standard for ourselves and to not get trapped in some of the situations we saw some family members in.

When she graduated high school, my mom tried to get out. She moved to California to live with her aunt and uncle. The plan was that she could live there and go to college for free. But alcoholism struck again. Her aunt was very ill from alcoholism and on the brink of divorce. Although I think they had the best intentions, they felt that they could not support my mother and she was sent back home. But there was no home to come back to. After graduation, my grandmother had put all of her things out in the driveway. She was not welcome home. And her dream of college was gone.

Y’all, this is how good looking my dad was when my mom met him.

She got a job at the phone company and rented an apartment. There is where she met my father. They had met briefly before, when my mom was 13 and dated a guy in my father’s class. My dad was 6 years her senior, but had been held back twice, so didn’t graduate until he was 20. My dad was an attractive guy, though. My mom would dress up and put on make up just to take the trash out, because she would have to walk by his apartment then. Eventually, they started dating. She soon became pregnant with my sister and they married. He was 25, she was 19. 

My mother, my older sister and I, in 1970. My mother would be 22 here.

What Diane had come to learn at a young age, is that hard work could get her far. My father worked for the Union Pacific Railroad as a carman. My mother tried to find better work and applied for a job as a mailclerk at Mutual of Omaha. In a story printed a few years later in an insurance industry magazine on my mother’s “Horatio Alger story,” the man that hired her said when he asked her why she should hire her, a woman with children in the 1970, she famously said “because I am a hard worker.” He gave her the job. Diane had an almost infallible work ethic. She knew that if you show up, work hard, and do your best it can mitigate some of the effects of things like being a woman, being poor, and having only a high school education. 

Some of my earliest memories of my mother were our morning routine. We got up at 6:30am, we got dressed and brushed our teeth. My dad, my sister and I would pile in our car, pull out of the garage and wait in the driveway. A few minutes later, my mother would come out in her fancy work clothes. She always wore heals, nylons, a skirt and a blouse, often a suit jacket, her nails were perfectly polished, and her dark hair done in a flip like Marlo Thomas on That Girl. She was young, probably only 25 or 26 then, and one of the few professional women we knew at that time. My dad would drop us off at our babysitter, Jo’s house, take her to work in Omaha across the river and then take himself to his job. It was just what we did. My sister and I went to school, they went to work. There was no drama about it ever. You were always supposed to be ready on time, be ready to work, be pleasant about it, and work your hardest. 

My mother rose through the ranks at Mutual, and at some point, I remember a kind of breakthrough promotion. I believe she had become assistant vice president in this Mutual of Omaha subsidiary called “Mutual of Omaha Fund Management Company.” We would sometimes go with her to work on a Saturday, and she would set us up with typewriters to play with or papers to copy. One Saturday, our job was to help move her from the main floor, a sea of desks, into a small office. She showed us her new name plate that slide into its holder on the outside of the office door. She now had a little pen set that went on her desk. Two fancy gold pens that perched at an angle in their holders. She had these gold fringed miniature flags, too. One a flag of the United States, and one a white flag with the Mutual logo on it sat in a wood and brass flag holder on her desk. It all seemed very fancy to me, and I started to get that my mom was becoming an important person at work. She would eventually rise to Vice President of Operations, or maybe it was Chief Operating Officer, and her offices would get bigger and fancier as her pay climbed as well.

My father traveled a lot for the railroad for several years as a steel inspector. He would go to places like Youngstown, Ohio or Buffalo, New York or Pueblo, Colorado and inspect steel mills that the UP bought products from. Usually, he would be gone during the week, and we would pick him up at the airport on the weekends. Sometimes, he might be gone for several weeks in a row. I did not realize at first that other kids didn’t go to the airport twice a week like I did. So my mother had to manage a lot while we were little. She never made a big deal about it. But my sister and I always slept in her room with her when he was gone. At first, we would all sleep in her queen-sized bed. I was always in the middle. But as we got bigger, we traded off. One would sleep in the bed with her and the other would sleep in a sleeping bag on the floor. This went on for years, until the UP ended the inspection jobs and my dad was back to working at the railroad shops. 

My mother, sister and I on vacation together. She would have been about 27 h ere and I was about 6. Although my dad likely took this picture, it was the three of us for many years during my dad’s traveling days.

My mother almost always made more money than my father. At the end, it was something like 3 or 4 times as much. My father worked at the railroad for 40 years. He showed up every day, even though I know he was not really very inspired to work there. But often, his salary was what paid the day to day bills, plus his job provided our family with health insurance. Her money was used for vacations and bigger purchases. They made it work, and I don’t ever remember my father having any insecurities about this, nor do I remember my mother holding it over his head. They rarely fought, and I rarely had any feelings that the family was unstable or that they would divorce. Even when the UP closed the Omaha shops and my dad had to either quit or transfer far away, they stayed together. Knowing that it would be hard for my dad to find another job, they lived apart for 6 years, him in Pocatello, Idaho and her back in Omaha. They visited back and forth frequently, and the marriage endured.

I know that my mother’s goals for her family were largely to give us the stability she did not have. Financially, with their marriage, and otherwise, it was always extremely stable and secure. My parents rarely drank. They budgeted and planned carefully, They did not have significant money troubles and lived within their means; they did not fight much nor was there any violence in our house. I don’t think this necessarily came easily for her. She had really no role models and was never taught how to raise kids, manage money, keep out of trouble, etc. She always regretted that she did not get to go to college, and she always valued education. Not only formal education but being self-taught. She was skilled at finding mentors to guide her, and would also go to the library and read books on things she wanted to learn more about. Our house was filled with books about leadership, dressing for success, and managing money. Although she eventually made a very good salary, I do think the early years were lean and she also acquired some amount of debt that she paid off on behalf of my dad when they were first married. 

My mother adjusting my mortarboard cap at my graduate school graduation at the University of Kansas.She highly valued education and really wanted us to go to college. Both my sister and I earned graduate degrees.

Her marriage with my father was something I didn’t think too hard about as a child, but have come to understand much better as I have become an adult. Weirdly, I got more insight after she was gone and I saw my dad without her. I’m not sure I can explain this right, but this is what I have come to see. 

From the time I was 11 or 12, I started to realize that my dad was not quite like any of the other dads, but I really couldn’t articulate why. I have come to believe that my father has some undiagnosed, relatively minor learning and emotional disabiiities. This is part-armchair, I admit. But partly because I am trained in special education assessment and the signs are really obvious to me now, even though as a kid I could not name what the deal was. My father came from a difficult background as well, and has always had a level of aphasia and learning disabilities, probably dyslexia. He is also a bit emotionally immature and unaware. I think this has to do with his own child hood trauma. 

He is a good guy, my dad. He is hard working, too. He is very much WYSIWYG. He is not manipulative in any way. He is fun and means no harm. But he seems to have always required a relatively minor amount of actual life skills support from others to be his best self. For example, if he were to try to get a job in today’s job market, I think he would need a lot of help with the application process, filling out forms, maybe even some interview practice. Without help, I think he would struggle with the application process. But once he is set up in a job and knows what to do, he is fine. He will show up every day and do the job. But the job would need to be pretty straight forward. He was not stupid, he just had trouble with anything involving reading, spelling, procedural stuff, etc. And he is not unkind, but he needs to be told straight out what is going on around him and what other people might need. So, like, how to act in social situations and things like that. 

My mother and father on a trip to visit me in Oregon (I think) in around 2000 or so.

You can see where they may have started out as two young poor kids from troubled families who didn’t know anything. But as my mother learned more and became more successful and became more sophisticated, he largely did not. I know she would get frustrated to take him to business parties and she would heavily prep him before hand and help him along at the event. You could easily see how they could have grown apart, but they didn’t really. She always provided just enough support to him so that he could be his best self. And he was always the steady workhorse that she could depend on. When no other dads were cooking, cleaning and doing laundry, My dad was. My dad would fix our hair and get us dressed when we were young. She expected it of him and he rose to her expectations. My dad was always fun and a bit adventurous. I think he brought that to her because she could be a little intense and even boring. She often would say how easy-going he was. How he was always positive and could see how “the cream always floats to the top.” They enjoyed going on vacations together. But my mom wanted to sit somewhere pretty and relax on vacation, and he wanted to go, go, go. So they managed to trade off every couple of years and balance it out. 

From the time she got the diagnosis of glioblastoma multiforme to the time she died was only about 10 months. In that time, she had life altering brain surgeries, radiation treatments and chemotherapy. Her functioning, including her cognitive functioning, changed rapidly in this time. Still, it was my father who was probably the tenderest with her, always there to support her, when sometimes my sister and I were at a loss with all the impending doom to come. In turn, she spent her time trying to set things up for the family she was leaving behind. 

One thing she did, literally a day before brain surgery, was to set up a trust for my father. I do not know all the ins and outs of it, but I know her goal was that he not be taken advantage of by a woman (or anyone) attracted to a fairly young and good looking and relatively well off widower. She knew that he would need some help managing everything. And she also knew that he is so conflict adverse and sometimes oblivious that he might not see or be aware that he is being taken advantage of. She did not want him to be alone the rest of his life. None of us did. But she also knew that he didn’t have perhaps the skills or ability to discern who was really a sincere person. Her idea was that if she made all kinds of stipulations in the trust, that the woman who only wanted a meal ticket would be dissuaded. She thought that it would help to self-select only the women who could take care of themselves and had their own independent lives would come around. And then, he would have money to not only spend to enjoy his retirement with a companion on fun things like vacations and restaurants, but that he would also be ok if he needed long term care. He understood this and wanted this as well, and so in that way, Diane is still trying to watch out for him and make sure he is taken care of. 

The very last picture taken of my mother two days before she died. She is sitting in a wheelchair in the house she made an offer on. Her face is puffy due to chemo meds, her face is a bit lopsided due to paralysis, and her bald head is under a scarf and hat. Still, she has her pen and notebook handy to take notes in the business deal she is involved in.

One of her last business efforts was to buy me a house. She put an offer on a house the day before she died, for me and for my father to live in when he came to visit me. She wanted to make sure I had a steady, safe place to live as a person who is deafblind with kidney disease. Since she died the next day, I did not get that house. But my father honored her wishes and he bought the house I currently live in. Make no mistake, my father never would have bought a house and let me live in it for just the cost of expenses if it hadn’t have been her plan all along. A few years ago, he turned over the ownership of this house to me. 

I have often complained about this house and its upkeep. But truly, I always have known that this is the house that Diane built. It was her years of hard work and good money management that even made it possible for it to be bought, mortgage-free. It was her desire to leave something behind for me so that I might have stability that allowed it to happen. This house has allowed me to have and raise my children in comfort. To start a business, to even have a steady place for my husband to land so that immigration was happy. To live through short-term unemployment, long-term disability, and an unpredictable future. I know that I am privileged to have this house. And quite often, I look around at the safety of the walls, still strong even when my kids colored on them, and have a physical representation of her love for me and in turn the grandchildren she never got to meet. This house has been the foundation of my family, and without it, I would not have been able to offer them the stability and safety that my mother gave to us. 

Behind the drywall in my house, I wrote notes to my mother in sharpie. This one, behind my living room couch, just says “Diane K. Ferris 1948-2003.”

My mother wasn’t perfect, of course. I have written here and elsewhere about some of the issues I had growing up as a blind person and how hard it sometimes was to live with an uncompromisingly tough mother. But I write to help other parents of disabled children avoid some of those pitfalls. I have long since gotten over any anger that I had from those experiences. I even value them in many ways, because now that I have a child who is trans and on the autism spectrum, I use my mother’s mistakes as my own strengths. I don’t know that I have always known what to do with my daughter, she challenges me at times. It’s is probably not unlike the experiences my mother had raising a daughter who was losing her vision and hearing–and she didn’t even have the internet. But because of my own experiences with my mother, I resolved early on that no matter what—my home would be a safe place for my children. It’s a place where they can be themselves and feel safe to explore who they are. I still talk about the values my mom taught me, like hard work, education, and how to fit in to society’s expectations of you. How you should dress and act. But I also try to see more of the uniqueness they have to give and try to help them figure out the best ways to express it. I could have only known to be conscious of this by experiencing some of the harder aspects of the relationship with my mother.

As we now know, family trauma can be trans generational. I know some of my mother’s trauma was passed down to my generation. And maybe even to my kids (probably in addition to disability trauma). With my mother’s upbringing (and make no mistake, her mother had her own generational trauma) she could have been an absolute horror as a parent. But everything she did and who she was, was about giving us a better life than she had. To moving us forward as a family and improving the opportunities for us. In a single generation, she managed to erase poverty, abuse and violence, alcoholism, and chaos from our family. She was a tough, hard working women with high standards and very little tolerance for drama. But she also tried to be very fair and kind. I have lots of flashes of memories of her being so happy to see me and of her being so excited about a new opportunity I was about to take on. It wasn’t all hard-as-nails, there were many fun and compassionate moments, too. But my mom was a tough mother, you can’t get around that. And I think that was her way of shaking off her past and giving us the opportunity to live a better life than she did growing up.

My job is to take it to the next step. This is also why I have tried to look honestly at some of her mistakes and see where I can make improvements. How can I take the best of the gifts I was given from her and take them to the next step and make them better. My kids know all the links in the chain I brought forth from my mother. I expect them to show up, be presentable, work hard and value education. I can hear her speak to my kids in my head sometimes. Sometimes I channel her for them and tell them what she is saying. Sometimes I soften it. Sometimes I try harder to look at them for who they are and acknowledge how hard they are trying even if it’s not quite up to snuff. Sometimes I try to find more creative solutions for our conflicts than she might have. But this is just my way of continuing the links in the chain. I don’t know if I’m managing to do this raising a family thing, balancing work and home thing, and being a woman thing any better than she did. The times are different, my situation as a disabled person is so much different. It sometimes feels like apples and oranges and very hard to compare. But I know that she would expect me to carry forward what she did and improve on it. She would have higher expectations for me, and so that is what I have tried to live up to. 

I asked her once, just a few days before she died, what she wanted me to tell my future children about her. She said that was up to me. I don’t know if I’ve done enough to tell them about her. They only have a vague notion that I had a mother whose name was Diane, and they have this idea that she was tough. But I don’t think they realize how much of her is in them. And how much of her has been a part of their growing up. She is ever present in this house that she built for my family. They know her values, they live them. And they know that in some of the ways we have been privileged as a family, it is directly because of her and what legacy she has left us.

Everything that she did is still here. Every accomplishment she earned, we still benefit from. The chain cannot be broken.

One of the last pictures taken of my family of origin.My sister, father, mother and me are sitting infant of the fireplace in my parents’s Omaha house. Unlike my house, her house was always perfectly immaculate.

Writing Homework Series: A Pivotal Event

Assignment number 4 was to write about a newsworthy event (could be local, national, or international) and show how it affected you personally. The assignment also involved interviews and research. I did “interview” Nik for this one, and he concurred that my memories were basically the same as his. This is a skimmed down version of our “meet and get married” story. It was actually a lot more complicated that this but I had a word limit. I don’t totally know that I believe that if 9/11 hadn’t happened, we might have never spoke again. But I guess it’s possible. Still, I do think it is true that 9/11 was an event that put our little shenanigans into perspective. Having our friend, Grant, around as a buffer probably also helped. In the end, I guess it worked out how it was going to work out. Nik is still my best friend and life partner.

Everyone has a 9/11 story, and mine is not that interesting on its surface. But on a personal level, it did change the direction of my life.

I was pushing the snooze button on my 6:15 alarm, procrastinating getting up to go to work and had thus fallen into a much deeper sleep than I had even been in before the alarm vibrator had started shaking my bed awake. I did not hear the phone ring, but I did start to become aware of someone yelling into my answering machine. It was my friend, Dwight, and I knew by the tone and shouty-ness of his usual quiet voice that something was wrong. I thought something was wrong with him. He was a quadriplegic and I was his occasional back-up personal care attendant. As I slowly sat up, wondering if I could get away with taking the light rail several stops in the opposite direction of my work before 9:00am, I started to make out the words “Fire!” and “Washington!” and “Airplane!” What?

I lived in Washington County. And for some reason, I thought there was maybe a plane crash in Washington County that was causing a fire. Though that would be big news, Dwight wouldn’t call me so frantically unless it personally affected either me or him. I rushed outside, thinking that if I could feel the heat or see the flames, I would know if I had to run.

Nothing. Nothing was going on outside. In fact, it was quite peaceful and nice out. 

As I walked back in, the phone rang again. I picked it up thinking it would be Dwight again. It was Nik, my husband. But this was several years before he was my husband. I was surprised to hear from him as we had left each other months earlier with no real plans to talk again. 

“Grant wants an American perspective about all this. What are you hearing?” He asked.

Grant and Nik were roommates in Toronto, Ontario. I didn’t know what he was talking about, but it was slowly dawning on me that something big was happening outside of Washington County, Oregon. After Nik told me to turn on my television, he and I watched together as both towers fell on live TV. It was interesting to compare the coverage I was getting on CNN to what they were hearing while flipping through the CBC and BBC and even Al Jazeera. Comparing coverage between several different international news sources about the same event over the next week or so was an eye-opener to me. So much for getting an American’s perspective, they had access to a lot more information than I did.

September 11th, 2001 was so huge and traumatic, for North Americans especially, that it broke what had been a bit of a stalemate between Nik and I. We had a weird relationship thus far, that was mostly failed due not really too much because of us personally, but because of international invisible lines separating countries. As disabled people, we had failed twice to immigrate either way in our efforts to be on the same side of these lines. 

We met 8 years before 9/11, in 1993 at a New York guide dog school. He barely spoke English as he was an international student from Sweden. We instantly hit it off. Within an hour of meeting him, I told myself “I’m going to marry him.” We spent 26 days almost entirely together while training our dogs. He was a student at York University, I had one more semester to finish up at the University of Nebraska. We wanted to be together. It made the most sense for me to go home, finish my semester and then try to get a job in Toronto. But in our early 20s, we were overwhelmed by the prospect. And when I started the motions to see if I could get a work visa for Canada, I was turned down due to disability. Nik and I were realists. We decided to go our separate ways.

In the 8 years since, I had gotten a graduate degree, moved to Portland, Oregon and started an information clearinghouse for disabled students at a university. One day, I got a call from a Canadian teacher looking for tech training for a blind student. “I don’t really cover Canada,” I said. “But let me do a little looking around.” 

That was where I found SCORE, A Wayne Gretzky sponsored program for blind students that stood for Summer Computer Opportunities in Recreation and Education. And look who I found working at SCORE as a camp counselor? It was my old summer boyfriend, Nik. Should I email him? It had been 8 years, we were mature adults, why not? I can see what became of him.

At first, all seemed well. It was early 2001 and Nik had finished his education, and was working at IBM in Markham, had gotten married and had 2 children. Great! Life was good for Nik, it seemed he had gotten what he wanted. We chatted via email a few times in the next few weeks.

But then, he showed up on my doorstep with the truth. He was separated from his wife. He had gotten married too young. He had just been laid off from IBM along with 12% of their workforce, and he was living in the basement of a Filipino family’s home as his house had to be sold for the divorce. But there was good news! On his way out of IBM, he had taken a contact list of clients he had been working with and one of them wanted to hire him–The one in Portland, Oregon. Could he stay with me for a bit until he got his own place?

“Uh, OK?” I reluctantly agreed.

The next two months were tough. I had a messed-up guy and his elderly, sick guide dog in my cool little bachelorette apartment. I went to work, and he went to work–the job was real and a good one. But despite everyone’s best intentions, no one knew how to go about getting a blind guy via Canada via Sweden to be able to legally work in the U.S. His boss asked me if I could marry him. Not like this, I complained. But that wasn’t even the issue. Lawyers said he wouldn’t pass the physical. 

One day, after I had taken his guide dog to my vet because he had a horribly infected tooth and I had paid hundreds for him to get it fixed, I hit my limit of tolerance for the situation. 

“You need to leave. Go back to your children. Figure your life out. Get a job where you can actually be legally paid. Get out.”

He was on a plane 48 hours later. And except for a small check in to see if he and the dog made it ok, we hadn’t spoken since.

Until 9/11. And 9/11 was such a huge, perspective changing, distracting event, that it blew whatever weirdness was still lingering out the window. It was during and after 9/11 that we truly became friends. Because we had tried immigration both directions and failed, it was off the table and we never expected to be able to have an intimate relationship. We truly could build a friendship and trust and support each other as friends.

In the 8 years after 9/11, Nik was able to straighten out his life, spend time with his children, get a job, and move to a nicer neighborhood with his roommate, Grant. It wasn’t until his own children moved to the United States with their mother that it ever occurred to us to try again. In 2010, Nik was finally able to legally move here and we started our married life together, 17 years after we met. We will celebrate our 13th wedding anniversary in April.

It is difficult to know how long we would have gone without speaking without 9/11. At that point, there was just no way I felt like talking to him for a very long time. I needed a break, and maybe the break would be forever. Only a bazaar and overwhelming situation like 9/11 completely distracting me would have allowed me to answer the phone and talk to him on that day and the days following. It strengthened our relationship and clarified the trust and friendship we eventually developed. Although nothing can make up for the tragedy of so many people brutally killed on September 11th, it is interesting to see how such events change the course of lives in not only the obvious global ways that it did, but on the very personal level. Everyone has a 9/11 story. Mine is not that special. But to me, it pivoted my life in an unexpected way that I am still grateful for each day. 

Why I Hate “Good Manners”

A 3D cartoon depiction of an old man walking with the assistance of a walker.

 

I watched her point and roll her eyes and look embarrassed. It was a crack in her usual façade of impeccable properness and good manners. She was irritated that her 80 year-old partner, who experienced some incontinence was dribbling a bit while he tried to rush to the bathroom, frantically pushing his walker ahead of him in this losing race. “He does that on purpose,” she said inexplicably. As if he had some master plan to make her life more difficult by getting a few drops of urine on his pants. In truth, it was so ingrained in her that men don’t piddle their pants, that she needed to make an excuse to let everyone know she knew better. She needed to separate herself from him. She was no longer his ally since he could not perform proper good manners. She needed everyone to know that she, unlike her partner with the enlarged prostate, was a proper person who would never make such a social faux pas.

 

In truth, under the properly dressed and coifed exterior and the good manners, she was still just that immature mean girl from middle school. And it was coming out as her partner became more and more disabled. Her manners that she depended on to get her through any situation in life with grace, were failing her. And there wasn’t too much left underneath.

 

This is why I hate manners.

 

But lets get a few things straight, first. Manners are social norms and rules that should not be confused with kindness, compassion and consideration. It may be that the Venn diagram between “manners” and “kindness” overlap at times, but they are not the same thing. I am not against kindness and consideration. I am not against manners when they are used as tools to be kind and considerate. But they are tools. They are not moral qualifiers.

 

Manners are almost entirely social constructs. There is really no universal “good manners.” They are not static and evolve with time and place. Manners used to mean that woman wore corsets, gloves and petticoats when going out. They no longer need to do this. It used to mean a black person gave up their seat for a white person. We now see this not as good manners but as oppressive behavior. Manners in different cultures and geographic locations are also different. Many Muslims do not shake hands with their right hand. Swedish folks are less likely to find kindness in a total stranger’s uninvited small talk than we do in the U.S. Chinese folks line up ahead of getting on the bus instead of clamoring on willy-nilly like we do in the US.

These types of manners and conventions have their place in society. They help people to connect more comfortably and to know what to do and what to expect in new situations. Manners make it so every new interaction isn’t as if you’ve met an alien from another planet with no idea how to behave. They can bring people together, show respect, and smooth social awkwardness. Manners and social conventions are constantly being negotiated by society as a whole. They change slowly, and they often change when someone breaks convention and gets socially punished for it, until everyone slowly accepts the new convention and finds it’s actually preferable to the old way. All of this is normal and culturally healthy.

 

But “good manners,” like anything, can be abused. Sometimes people lean on good manners and proper convention so hard, they become weaponized instruments of exclusion and oppression. Manners are tools, not moral imperatives like kindness.  Many times, the ones who are hit hardest by the weaponization of good manners are those already marginalized. It used to not be good manners to socialize with a person of a different race. This issue was life threatening to black Americans. People were murdered over it. Women in some cultures are still murdered if they walk down the street and talk to another man without a father, brother or husband escorting them. Transgender and nonbinary folks still face violence today for using certain pronouns, wearing certain clothing or going to the “wrong” bathroom. Weaponizing manners and norms sometimes have life or death consequences.

 

But I’d like to talk about how “good manners” harm and exclude disabled people, because that is the community I know best. Disabled people have a long social history of being hidden away in institutions or almshouses because they did not look or act conventional. “Ugly Laws” in several states were on the books as recently as 1974. They made it illegal for those who looked or acted in unconventional ways could be arrested just for walking down the street. Blind folks did not move correctly, folks with facial deformities were deemed illegal for just being seen. People who maybe could not behave with conventionally—aka with proper manners—could be arrested. Proper, well mannered people were not to be subjected to any social unpleasantness. And this unpleasantness was conflated with low morals and even thought to be inspired be Satanic and evil forces.

 

Today, it is much harder to arrest folks for how they look or if they act unconventionally. However, I still see examples time and time again of disabled folks being excluded and harmed by people who lean in to their good manners as if they hold some kind of moral high ground.

 

As I talked about in my last post, blind people are often accosted on the street for merely walking. I am not talking so much about well-intentioned people who just ask us if we need any help, although that is how some of it starts. I am talking about people who do not listen when we say we are fine, grab our bodies and pull us around obstacles, yell that we shouldn’t be out alone, even call the police on us. This is not because of some well-intentioned worry for our well being, this is because people don’t find how we MOVE to be proper. We do often move differently, tapping a white cane into an obstacle and walking around it, reaching out to feel for a door, or using our feet to find the start of a flight of stairs. We move unconventionally, and so people who see themselves as the arbiters of what is proper and well-mannered don’t want to see us on the street.

 

I have heard of blind kids who want to be in a school play, but are told they can’t because they won’t be able to hit a mark on the stage. But we can hit marks, we just have to do it in the unconventional way in which we move. But that would upset the audience, so kids are often excluded from drama. This is not because they are blind, this is because of people’s over sensitivity to manners.

 

The same goes for kids with autism who may flap their hands or have poor eye contact or not use vocal communication in the conventional way. People exclude them not because an autistic person can’t enjoy or benefit from a particular activity, but because social convention and manners calls for a way of behaving that will not make anyone even slightly uncomfortable. I know people with cerebral palsy, which can cause unconventional movements, getting denied jobs because their bodies and how they moved would be “upsetting to customers.” And make no mistake, being uncomfortable at difference and using that as a reason to exclude is a social convention-a manner- that we have chosen to accept as a society. We could choose to look at difference as a chance to learn and get over our discomfort. But that is not the manner we have often chosen. Society has decided that it is a better convention to just exclude those people.

 

Disabled people can even hurt themselves by being too bogged down by manners. There are many disabled people, a large amount are elderly, who just stop participating in life when they can no longer function in ways that ensure to the outside world that they have good and proper manners. I’ve seen elderly folks shut themselves in because they can no longer wear make up or do their hair like they used to be able to. Or, go to the bathroom in the usual way. They refuse to ask for help or find alternative ways to do things or simply change their priorities. They often say they have lost their “dignity.” Dignity is not about how you walk, dress or do your hair. Dignity is about being the best person you can be. People are born with inherent dignity. Disability cannot take dignity away.

 

I am constantly shocked by how  what method is used to go to the bathroom is so conflated with “dignity.” And how often “dignity” is confused with “manners.” Often, this is the issue cited when people talk about assisted suicide. We all need to relieve ourselves. That just is. There is no morality to it. As a society, we have an infrastructure set up to use toilets. That is one way to do it. There are many others. Leaking and incontinence can be very inconvenient and physically uncomfortable. That is a physical reality. It should not be so fraught with emotional baggage. Thankfully, there are products and systems that help deal with incontinence. Once the right solution is found, it doesn’t have to be a big issue anymore. Even then, every once in a while there might be an accident. It is not a moral failing. It is not an embarrassment. It has nothing to do with dignity. Beyond hygiene, it has nothing to do with manners. It is either caused by a temporary illness or a permanent disability. It should not be cause for an inability to live life to the fullest and certainly shouldn’t be a cause to institutionalize someone or to end their life.

 

When I heard the woman make constant polite yet passively cruel comments about the elderly man and his incontinence, there was a part of me that said “what a bitch” under my breath. But soon after, I just felt sorry for her, because she is aging, too. It is 100% guaranteed that she will also lose her ability to maintain her good manners in the future, and it will be hard on her without some real foundation in love and kindness to back it up. They could throw out convention and good manners, accept where things are in life without being saddled with some false morality about it and enjoy life as much as possible—finding solutions and getting help when they need it. But instead, she is holding on so hard to her idea of what is proper and her good manners that she is going to fight an uphill battle that they won’t win, and make every second of it harder than it needs to be.

 

Good health and ability is always fleeting. It will never last. There is always disability and illness to deal with. That can be hard enough. There is not reason to bog it down with useless social conventions and false morality. We need to change our “good manners” to be not so much about making things look polite and proper so no one will ever feel uncomfortable. Manners should not be about using the proper fork or knowing what Mrs. Manners would say in every situation by heart. Those things are just an empty drama in a bad play. We need manners to that accept difference and a little awkwardness as normal, and to work through issues with honest communication and compassion. We need our good manners to not be shallow conventions with nothing behind them. The Venn diagram between manners and kindness and consideration should be overlapping circles. Good manners should never be about appearances, but about truly being kind and considerate in everything we do, even when—especially when—we are faced with difference.

Writing Homework Series: That Time I Forgot to Code Switch

Getting back to my writing homework series, it’s been so long I forgot the assignment for homework #3. It says “Flash Nonfiction” and I think it was some kind of thing where you set a timer and write for 10 minutes type of thing. I must have been mad that day, because basically I bitched about “The Public,” which is what disabled people call the people that we deal with on a daily basis. But I forgot that other people don’t get what we deal with on a daily basis, so I got a lot of questions from my teacher and classmates about why this woman was harassing me. Well, she was harassing me because I was walking down the street while blind. That happens literally every day to every blind person I have ever known. It just is. But the students in my class thought I must have done something to provoke it. Nope. Just minding my own business being blind. It happens so often that we forget others don’t deal with things like this very often. So, it was a good lesson on code switching and remembering that in some ways, being disabled really is a different cultural experience all together. No blind person would read this and be confused about why a woman was harrassing me because they live it. If I am going to write words that non disabled folks want to read, I am going to have to put it in the language they can understand.

I was using my burrito bag to cross the street, although I couldn’t explain that to this stranger who was admonishing me. I mean, I was using my guide dog, my knowledge of one-way street patterns in downtown Portland, and a smidge of hearing. But I had noticed that I can always get a good vibration with a paper bag with handles and a small amount of weight to it. By holding it loosely in my fingers and turning it 90 degrees, I could tell whether the cars were going in front of me or not by the way it vibrated. This Chipotle bag with a burrito in it turned out to be a choice weight for this task. But “Leave me alone with my burrito bag!” was not going to be of any benefit to me except to make me look crazy.

They say that someone who has put in 10,000 hours into a skill will master it. We understand this to be true and we respect it with certain skills. We respect that a good pianist has put in hours of practice. We know of Olympic level figure skaters who got up at the crack of dawn before school since they were 6 to get to that level and we admire that. Some skills aren’t so obvious. A zookeeper comes to find a random visitor intensively staring at a certain fish in an aquarium. The visitor says, “This water needs a better pH, it’s too acidic for this fish.” The zookeeper is confused until the visitor explains that she is a renowned marine biologist who specializes in this type of fish. The zookeeper’s confusion instantly turns to respect. A long conversation follows, and calls are made to correct the issue. We know that years of study and practice allow for many people to develop special skills that we don’t have, and we defer to their expertise.

I have over 50,000 hours in being a person who has found alternatives to vision and hearing by now. I have also had a good 10,000 or more hours of formal study in nonvisual techniques. It is a unique skill, I understand that. But it is a skill that is not respected, or even seen to be a skill at all. No one can deny that we are a visual species, and vision is convenient in its instantaneousness. But nonvisual skills are not substandard and lesser. In many cases they are better. I laugh when my airline seat gets changed out of an exit row. Who do they think will be better at finding the handle of the escape hatch over the wing in the chaotic darkness of a plane crash? Who is the one who finds and manipulates ways in and out in the dark every single day? I’ve seen how you all lose your shit when you have to do some corporate trust exercise under blindfolds. You barely function. You mistake that experience for what it is like to be me, a person who has a unique skillset. With maybe 10,000 hours of work, you would have it, too. There won’t be time for that in a plane crash.  But my expertise is not deferred to. It’s not trusted or even seen. Who is really in the dark when they don’t understand that facts come from the wind, the chain link fence, or a burrito bag?

Wading into the Murky Alien Waters of Event Accommodations

My UO Duck! A thin, blond 18 year old man in jeans and a blue polo shirt standing in front of a huge (like 9 feet high) toy wooden duck in the lobby of the Graduate Hotel after he finished his orientation for college called IntroDUCKtion.

When I attended the University of Oregon’s IntroDUCKtion (get it?) new student orientation with my son this past weekend, I had a fundamental misunderstanding of what it involved for me, as a parent. I went to support my son, of course, as he went through a series of workshops and social activities with other students. I didn’t think it had much to do with me. I was just there to accompany him down on the Amtrak and check in to the hotel with him as 18-year-olds are still not allowed to check into too many hotels themselves with someone else’s credit card. 

I knew there was some such something or other for parents and families, but in my head, I could only possibly imagine that this might be some 1-to-2-hour seminar on how to pay the bill correctly or how to make sure your kid had health insurance that worked at the university health center. I mean, going to college is not about me, it’s about my kid, right?

So, for me, the stakes were low. And that is why I admittedly did not put much work into making sure I, as a person with multiple disabilities, was appropriately accommodated. Still, I filled out the registration form and shot off an email asking for what I thought I would need for an afternoon on campus where I would be listening to speakers and moving around from room to room. I sent one follow up email a few days before the event and called it a day. I was not the focus of this event, I would not be tested over it or have to present it to my colleagues, I figured much of the info was available online anyway. A registration form and two emails were enough.

In reality, I struggled for two whole days and missed a lot of stuff. Since the stakes for me, personally, are so low, I thought I would take you through the murky, uncertain waters of being a disabled person at one of these types of events. Before I start: here are a couple of disclaimers:

  1. I am not mad at the University of Oregon. Technically, they did all that I asked. Some of it did not work out. Do I think they, and all event organizers could do better? Absolutely. But this post is not about ragging on UO. I’m just using this experience as a way to show how muddy the waters get when you ask for accommodations.
  2. I did not do everything I could have done to get better accommodations. I know that so you don’t have to tell me that I should have spoken up about this or I could have planned better about that. This is all true. But partly, I would like you to appreciate the amount of work it does take to plan and speak up about all these little things. Also, how there is a rate of diminishing returns on how you will be treated based on how many things you ask for.  How much work should disabled people be expected to do to wrangle accommodations for themselves when the nondisabled participants are being accommodated left and right without even trying?

I have multiple disabilities. I am both vision and hearing impaired. I also have kidney disease which was exacerbated this month due to a very low hematocrit (anemia) and a constant slew of graduation and social events in June that had left me exhausted. Furthermore, I am dealing with a temporary, but frustrating issue of adhesive capsulitis in both shoulders (frozen shoulder syndrome) so my arms are puny and painful noodly appendages that are prone to cramping fits of pain. Oh, and my guide dog is 10 years old and although she is still a very good dog, we are in those months of asking each other how long this partnership can go on as she is getting more tired and distractable as she ages. It’s a day-to-day thing, and I thought about not bringing her but decided she would be happier going. 

The Ask

I only asked for accommodations for vision and hearing stuff. Mostly because there was nothing anyone could do about everything else, but I do think I underestimated how the “everything else” affects the vision and hearing stuff. Thinking this was only an afternoon of seminars, I asked for 1) digital copies of handouts and slides; 2) preferential seating up front; 3) use of an ALD (assistive listening device); and 4) assistance in navigating to different rooms or buildings I needed to travel to. I did receive (somewhat) all those things.

But one of the big problems I see at these kinds of events is that you are only supposed to have like 1 disability to accommodate. Any more than that and you are going to confuse the system too much. I have even filled out forms with checkboxes for accommodations (i.e., ASL interpreter, wheelchair accessible seating, braille handouts, etc.) and you can only check 1 thing at a time. If you need wheelchair seating and an ASL interpreter, well-choose which one you like best. Do you want to understand the words, or do you even have a place to sit at all? Is the wheelchair seating in a place where you can actually SEE the interpreter? Or is it on a platform at the second level left hand side of the auditorium when the terp will be on the lower level, right hand side? These are the things that event organizers don’t consider. 

The other struggle I and others often have is that we are always in transition. Our disabilities aren’t stable. Needs change in real time. For example, what if your vision is worsening and you can kind of see large print but you are learning braille? Optimally, you’d like both large print and braille. Your braille is too slow to keep up so the large print can kind of orient you to a page and give you clues to its content, but you can only read headings, not the details, so you need to use your rather slow braille skills to read some of the details in time to make it relevant to the discussion at hand. But you can only check 1 mode of accommodation, not two. This type of linear thinking about disabilities that are actually dynamic put forth barriers to inclusion. Especially for those with multiple disabilities.

The Execution

I did receive the digital handouts and slides in the afternoon before the orientation. But problems arose almost immediately. First, the documents were in One Drive. So, I had to get an access code and then I could not download the documents into my own files. This limited what type of scanning I could do with them. Which I needed to do because some of the documents, like the schedule, were graphics, not readable by my screen reader. Giving blind people inaccessible (or barely accessible with some manipulation) documents is very common. Then I must decide how much I am going to try to take each document and try to OCR scan the text and make sense of it all or try to teach the event planners how to make accessible documents. This can take hours and hours of work.

Y’all, my plan was that I was going to do the afternoon of family workshops and then take the other day off. I packed a swimsuit. I was tired. I wanted to just chill at the hotel, sleep in, get some food door dashed, maybe hang at the pool, and call it a day. But when I finally was able to OCR the schedule, I found that there was a WHOLE DAY of events for families. I still could not exactly read it, it was all out of order, with the times listed first all in a row and then the events listed later. So, my assumption was that Thursday was my day off, except for dropping off my kid, and Friday was the day of these events. However, I was still wrong, because I later found out that the schedule they gave me was completely a different document than the print schedule that they gave everyone at the event itself. There were 2 whole days of events for parents, and I had no access to a schedule for any of them. Giving blind people the WRONG version of a document is also super common.

There are many things that happen at events like these where, as a disabled person, you sort of start to feel like an alien. I mean, this is not the biggest of deals and you can’t take these things too personally, but they are little things that happen all day long. 

The first is the assumption that everyone comes in a car. We came the day before on Amtrak, then took the local bus to campus. So, when we walked up to the line to enroll, we did not know that we completely bypassed the car drop off and park location, where people were directing students to this line and parents to this other line. We just got in a line. Slowly, it became apparent that this line was for students only and the parents were nowhere to be found. Not wanting to cramp my kid’s style, I backed out of the line and went to sit on a bench to regroup. I went back to the litany of emails I got about this event and reread. I often skip the 3 paragraphs where they give people driving and parking instructions. Sure enough, buried in one of these paragraphs, I learned the place where parents had a separate check in. I decided that I would start looking for middle aged Gen Xers and see if I could follow them over. And I was successful at this, thanks to some other parents I caught a hold of.

Through the line I go, until a young girl tells me, go to table one. Table 1 is where? But she is already on to the next person, and I lose her. So again, no idea where to go. I just wander around and start asking folks and eventually find my table. (Remember, I still think at this point that I am just going to drop my kid off and hit the pool.) But I am told when I check in that I should go to the Pathways meeting. This is a financial aid meeting that is not for every parent, so it isn’t on the agenda. Where is this meeting? I ask?

“Over there.” 

Uh huh. Ok, so I work with this kid who does not know which way west is or what the name of the street is that this building is on. It’s the last building over there, he gestures. He points to a map I can’t see on the back of a card with a schedule I can’t read. I work with him a bit, but I can tell that he does not have the capacity to give good, blind people directions, so I decide to go it alone. But first, I need to get out of this courtyard I am in. The way out is—you guessed it—over there.

I walked a ways, trying to use google maps, but it was a no go. I had a time issue, so I decided to go back to where I had come from and ask for help. I met my temporary buddy—a nice kid named Jerry—to walk me all the way to the building I needed to be in. On the way, we collected a few other parents. 

I walk into almost pitch blackness (to me, that is just the way my eyes work) and did not know if I was in a hallway, a regular classroom with 4 walls, an auditorium or what. I lost Jerry for a bit as I wondered in while a speaker seemed to be talking. Was this a class going on? Was it my group? Should I avoid this speaker or go towards him? I had no clue. But Jerry found me again and did take me to a front row seat. I mostly sat and recovered from my last 30 minutes of having to figure stuff out. Using your brain to constantly process broken and incomplete information is extremely tiring. Several people come up to me and whisper things to me. I don’t hear them or know what they are saying. I just need a minute, so I nod and smile. Everything is fine. I’m sitting and I don’t have to do much now. Let that be for a minute. Slowly, I realize I can hear some of what the speaker is saying, and I start to listen.

On the way out an hour later, my dog gets distracted and promptly runs me into a pole. Everyone gasps, but I am not injured, and I take it in stride. (And she went out of her way to avoid that pole the next 20 times I walked by it.) Jerry walks me all the way to lunch, helps me through the lunch line, and helps me find a seat. Awesome. My son is there with me now, and I don’t even need Jerry to do this, but it’s good to set a precedent because I feel like he is my point man. When in doubt, Jerry will “appear” as if by magic at my elbow and I will have a comrade in this day. I know that with Jerry’s help, I will save on much fatigue and anxiety. 

Knowing Jerry would get me through was good in that I found out at this lunch that my leisurely time at the hotel was all for not. My son helped me read that full schedule that was completely different than mine, and I found out I was not only there all afternoon, I was there all of the next day as well. Oh my goodness! That is a lot of processing my brain was going to have to do. Little did I know, though. I was about to lose my new best friend, Jerry.

The Dump Off

One thing that happens to disabled folks is that people cannot seem to handle that our lives are not absolutes. If I ask for visual help and then I appear to see something, the visual help stops. If I ask for a person to write to communicate with me because I can’t hear and then they hear me talk in non-deaf accented speech, they stop believing that I really can’t hear. If someone in a wheelchair gets up to walk a few steps, all of the sudden people don’t think they need the wheelchair accommodations at all. This is what I suspect happened to me and my escort assistance. 

Because I went to take my dog to poop. Ok, all guide dogs have silly idiosyncrasies that we work with. Mine is that my dog likes to poop in private, alone, away from everyone. I could not find a place for her to go that morning, so I knew we were reaching the desperation point and her guiding would decline dramatically the longer I left this matter unsolved. So, I walked away from the outside lunch area to try to give my dog her required private moment alone. Then afterward, I had to get her to help me find a trash can for said successful deposit. We had to go a couple of blocks before she located a trash can. By the time I came back, I was lost and my black shirted buddy was gone. 

I was supposed to “find any staff member wearing a black shirt” if I needed anything. This is a prospect I always find funny as a blind person. Blind people are excellent at social engineering their way around. We talk to anyone, ask anyone and get help from anyone. It doesn’t work all the time, but we try. The task of finding someone wearing a black shirt is not something I can either be successful at or spend energy on. So, when Jerry or any other blackshirted staff member did not appear at my shoulder, I had to go it alone. Could I have planned and asked for them to come find me? Well, no. Because I only just learned minutes earlier that I was staying for the afternoon. In any case, once I took it upon myself to find the next building on my own, (I used a combo of looking for my middle-aged friends and a navigation app put out by Seeing Eye), none of the staff ever magically appeared to help me again. I had done something independently, and so therefore (I am guessing) it was decided that I needed no more help. This is pretty common, sometimes you try to rectify it. Sometimes, you are tired and don’t want to make a big deal, and you don’t.

The Clumsying Around with Tech Accommodations

So, back to the digital handouts and presentations I go. But I totally lost access to my digital slides and handouts. Because One Drive would not let me download, even into my own One Drive account (because it wasn’t’ issued by the institution that gave me the files, the University of Oregon) I had to get an 8 digit passcode emailed to me each and every time I wanted to access a file. I use voice over, which by design takes longer to use. I had to go to mail, read down to the number, copy the number, and get it back in to the text box in the web browser. I think in normal circumstances I could have done this, but sitting in a chair, balancing my stuff, dealing with an earpiece ALD, listening to voice over in the same ear, I couldn’t get it done before it timed out. I did try several times before I just gave up. 

My usual preference is to use my own ALD mic that goes to my hearing aids. I clip the mic on the speaker and it bluetooths directly to my hearing aids and I can turn it off and on myself. But the tech people convinced me that because of multiple speakers, I should use their own ALD receiver. This is a little box with an earpiece. Since I had to use voice over and hearing aids to hear ambient sound, the best way for me to use this was to balance the ear bud near the microphone on my hearing aid. This is located at the top of my Behind-The-Ear hearing aid. Then I would take the earbud cord and wrap it around my hearing aid a couple of times to keep it in place. This worked marginally well if I didn’t’ move much. Too much movement and it would either fall out or deliver high pitched feedback in my ear. But when it worked, it did improve my comprehension of the speakers.

The Orientation and Mobility Digression

At the end of day one, I walked out a door….and there was no one. Everyone else was probably going back to parking lots anyway and I needed to get to a bus stop, so it likely didn’t matter much anyway, but here I was and I needed to get back to the bus stop and had no idea where I was or which way I was facing. This is nothing new and not a U of O issue. But although I am not a newbie at navigating while blind, I am a relative newbie at navigating while blind and having kidney disease and significant anemia. The mental resources are harder to come by these days.

The Seeing Eye nav app helped me get to the bus stop. But here is what I notice I do these days. I talk to myself. I become my own orientation and mobility instructor. I’m sure this looks wildy weird to anyone watching. I’m also less patient. So, I mean, I’m already talking to my elderly distractable guide dog, and it isn’t like I’m yelling loudly. But this has become a new thing I do? These nav apps are maybe 70% accurate on a good day. They will sometimes tell you to turn left, when turning left is directly into a hedge or a building or what not. These are things a guide dog is not wont to do. They like their clearly defined streets and sidewalks. Normally, I would try to find the next sidewalk going left, and I would let the app recalculate.

But I have no patience. So, my verbal narrative is something like this: “Turn left? FINE. Let’s go, Marra. We can do this. It’s ok. We are just going to go through the trees and over this bush and through this alley between these two buildings and oh, there is a dumpster there, we won’t be smelling that. Let’s go. We can do this. Ok. Turned left, and now we have Agate Street in 40 meters, wonderful! See? We got this, Marra! Now, Agate street here and we need to turn left again. Ok, turn left here and cross. Ok cars. Y’all need to stop for us. Use the force. You WILL stop for the blind lady and her dog. Ok, crossed the street. Almost to Franklin. Use the OKO app to cross this busy street. Right, now it’s got the signal in its sights. Ok, now forward, Marra, Good girl. Now we go right to the station. And here we are.”

All good! 

Except!

I cannot see nor hear the bus stop screen or announcements. I knew I had to go five stops. All I had to do was sit close enough to a door on this bus rapid transit vehicle and count 5 stops. Then I walk 3 blocks and am home free. Rest at my hotel (my son was staying in the dorms this night.) I count three stops. And then…

Yelling on the PA system. I don’t pay attention. It is never directed at me. I am just a polite middle-aged mom. The bus driver is never mad at me. More yelling. The bus doesn’t move. Even more yelling. I start to get concerned. 

Then there is a dude in my face. “Ma’am! You have to get OFF the bus! This bus is out of service! Go! NOW!”

Oh, OK. I didn’t know that. Can you tell me where we are though?

Silence, he is gone. 

I step off the bus. Logic about bus systems tells me that we are at the main city bus station because that is where buses go out of service. That is not too far from my hotel and I can just walk. But first I need to figure out where the hell on the block he just left me off. 

Back to the app, back to the talking myself through the navigation. After a couple of wrong turns at the get-go, I’ve got it. It’s hot, I am in pain. People either banging doors in my face that my puny arms couldn’t catch or holding them open for me and then wanting me to hold them open for the next person have made my shoulders just burn with pain at this point. I’m miserable, my dog is miserable, but we make it back. I feed and water my dog, water myself and then collapse on the bed in a fit of laughing tears. It is both relief that we have made it back and exhaustion at how hard it all is. And I have to do the whole thing again tomorrow.

I avoided a family reception in the lobby, waited to get door dash and went to bed and kept waking up dreading the next day. But MANDATORY (is it, for me? Could I skip?) No, I need to go. One thing about being disabled is that people notice when you are not there. I was afraid it would be blown into a big deal if I didn’t show up. Besides. I did want to learn something about health insurance and find out about my kids’ day. I could do this.

The Next Day

Getting there the next day was uneventful. Back on the bus, and back to the building. I made one wrong turn but corrected myself with the app. I found parents coming back from some type of morning coffee and pastries thing that I didn’t even know was a thing. I still don’t have access to an agenda. Although I avoided the family reception the night before, I might have gone to this because I didn’t even have coffee or anything as I wanted to give myself extra time for getting potentially lost. 

The ALD earpiece situation and the slides/handouts situation was the same. Except today I noticed something. There were 3 huge screens on the stage. I could sort of see them but not really. I started noticing that along the bottom was a black area with something moving in it. The pattern of the movement felt vaguely familiar. Then it dawned on me. 

Captioning! They were captioning this thing? Could I get me some of that? I could not tell if it was mediocre auto caption or whether it was live CART captioning. But for about 2 hours, there was captioning. Captioning is something I like to have to reinforce what I can hear, but it usually requires such prep work and balking about the costs from event organizers that it is really, really hard to get. And here it was, but I couldn’t see it or hook it up to a braille display. And it’s not like I could work this out now while I was sitting there in the dark and people were talking. I hadn’t even brought my braille display that day because since I couldn’t get the files to work and my shoulders were killing me, I took out all extra tech from my bag to lighten my load and just had my phone.

I also noticed that the speakers had a largish monitor on the floor in front of them with captioning. If I could only have access to the monitor and a braille display of my own to sit on my lap, I would have had total access to this thing for the most part. But weirdly, the captioning went away after a couple of speakers, never to return. 

By lunch time, I became determined to find a staff person to get me through the lunch line. But with 300 people standing around a large quad area, I had no hope. I didn’t know where to stand or what line to get in or if I was in a line, so I started asking random folks for assistance. People are always surprised when I say that when you do this, it will take you several tries before you find someone willing to help you. Some people go “deer in headlights,” some walk off, some give a cursory answer and run away, some act like they don’t understand or give you the wrong information. I finally found a line and figured that there would be a staff person up at the buffet to tell me what food there is, like there had been yesterday. But when I got there, there was nobody. I realized that the day before I had been in the special diets line because my son is vegetarian, and the person was there to answer questions about dietary restrictions and the ingredients. I could not hear anyone anyway, so I just reached around feeling carefully for a spoon or tongs and took a small bit of several things, not really knowing what I was going to be eating. 

Thankfully, another mom came up to me by the time I got to the end of the line and helped me the rest of the way and to find a seat. She also helped me later find the building again. Thank you, Mom from California with Blond Daughter!

The Deafblind Bored Diversion into One’s Own Head

I heard a bit of each of the day’s lectures. Some I heard very well, others, like the public safety guy’s, I couldn’t understand well. I drifted in and out of understanding what was being said and letting my thoughts drift. Here were some of my thoughts:

On having people in college that “look like you” in terms of diversity:

I get this and support this, but its always about BIPOC and LGBTQ folks, and never about disability. I have NEVER, and I mean NEVER walked into a college classroom and faced either a teacher or student that “looked like me.” I did not even meet another Deafblind person in person until my 30s, and I have never ever met someone with Deafblindness and kidney disease. With social media, I know a lot of Deafblind folks now. It is hard for me to even conceptualize the advantages of having people like you around because  I’ve never had it. Not to play oppression Olympics, but at least most BIPOC folks get to go home to a BIPOC family. I mean, I am in total support of diversity. I just have trouble figuring out what it would be like when you are sitting in a college class and hearing all the bad stuff about blind people that I heard and what if you had some teacher or student that had your back when you spoke up about that instead of looked at you like you were from another planet? Wow.

On public safety escorts at night:

I mean, it’s good, right? I have no problem with it. But then I think, while this police officer is talking about getting escorts whenever you want to, I think how hard it was for me to get an escort around campus. I also think, my 13-year-old is at this moment on a bus in a major city without an escort. How much of this is theater? Or am I just a horrible mother? My kids grew up on the bus and trains. They have ridden themselves since they were 13 or so. We are always just a text away to come rescue them in an Uber if need be. But these parents kind of make me feel like I’ve neglected them when they are talking about driving their kids everywhere. Yet really? Are cars any less dangerous? No one thinks twice about putting their kid in a car where they are more likely to be killed. Again, another planet.

On kids these days being immature:

Everything they said kids can’t do yet and we are supposed to teach them, my kids can do. My kid has called the doctor for their own appointment. My kid does budget his own money. My kid knows he needs health insurance. My kid does handle his own classes and has at community college since he was 15. I helped him only the first quarter. Oh my god! My kid is weird!!! I have parentificated him! I hardly ever had him do anything to “help his blind parents,” but did I make him do too much? Is he TOO responsible? Have I failed? Have I robbed him of his childhood? On the other hand, I’m sitting here going, why am I here? Why are you giving us like this parenting 101 lecture? You need to be taught NOW how to support your kid? When they are 18? Why not tell the kids about health care and public safety? Aren’t they supposed to handle this now? AM I???? Am I from another planet? Why is my kid way more capable than you are acting like these kids should be? 

On moving in:

Yadda, yadda, yadda, cars cars cars. Drop offs. Parking. Parking. Parking. See, here is my plan. We are ordering bigger stuff (comforters, towels, etc.) to be shipped here. We will take the train with his clothes in suitcases. We will go to target on the bus and get the little things like shampoo and stuff. We will show up with some shopping bags and then pick up our packages. We will not need a huge cart to move up the stairs. And a drop off point to unload. We will bring what we can carry. Bedding, towels, clothes, toiletries, a laptop. Done. He can get a few things to decorate the walls on his own. What? Am I forgetting something? Why should he have a carload of stuff that needs to be unloaded in a cart? Am I making him go without? Am I from another planet?

On the Accessible Education office:

Unimpressed with this woman. She is phoning it in. Why are all these disability offices this dull and unimaginative? She is screwed up with her slides, I can’t even see them and I can tell she is unprepared and screwed up. And guess what else? I was able to look at all the slides later. I got slides from every speaker EXCEPT the disability services office. I am SO. NOT. A BIT. Surprised. Why can’t the disability office be like the multicultural office or LGBTQ office and celebrate diversity? Why are we acting like this is a shameful thing where we have to ask secret questions in the hallway? Some of these parents have overshared to the point where I know the size of underwear their kid wears and their annual income and what’s in their financial portfolio, but no, disability is shameful, and we can’t ask even generic questions about it. No, I’m not the person from another planet, here. I know these offices like the back of my hand and I know how they should and shouldn’t work. She is the alien this time. She doesn’t know my people or what we need. 

The Return to my Planet

…and that is just it. I am not an alien from another planet. I represent one type of diversity, and my family is one of many, many types of families out there. But we are not considered too much at events like these. My kid will get hit with this still, as a child of disabled adults, and he will have to wade through it like the other marginalized kids, but no one will even get that he is marginalized in some ways, too. I can try to help him, but in the end, he will likely be a bit alone in this. There is no office that celebrates disabled kids and/or kids of disabled parents here.

I skipped out on the last 2.5 hours of programming where different offices were having some kind of open house things, I guess. Without an agenda or quicker help to navigate, I could not make heads or tails of it so I just headed back to the bus stop. I texted my son to let him know, with instructions that he could stay as long as he wanted before heading back to the hotel. It gave me a chance to rest for a bit before he came back, which allowed me to take him out to dinner and ice cream. He did tell me that he felt like many of the kids just came from a different place than him and didn’t seem to be quite in the same headspace as him. I encouraged him to give it longer than 24 hours, and that it would take time to get to know these kids so that they didn’t seem like a homogeneous monolith of white boys. And we talked about being proud of who you are and where you came from, but balancing that with being open to others’ experiences, too. He also wanted to know what I learned in my sessions, and repeatedly commented “why didn’t they tell us about that?” Why, indeed. He went to a session of the accessible services office as well, as a kid with a 504 plan, and mentioned that they weren’t on their game and lamented whether it was worth using them or not since they usually gatekeep so hard. We talked about how it would be better to go to set up a precedent in advance so you can choose when to use accommodations instead of doing nothing and then hitting a wall with no recourse. He laughed at me, “Did you hit the wall today, mom?’

“Yes, I guess I did,” I laughed.

I realize that I could have done much more to get myself accommodated here. It is hard, though, to describe the level of fatigue I deal with now. Many times, I suppose I could have gotten up and asked someone for more help. But I was tired and conversations when you are hearing impaired take a lot of energy. Many times, I sat quietly in my seat and just needed to recover. From the heat, from the pain in my body, from the brain power it took to travel and communicate and find the bathroom and the trashcan and the file and the earpiece. Disabilities interact with each other in different ways at different times. There is no cookie cutter solution. In much of this event, I could only sit quietly and recover and that was the best I could do.

I know I missed a lot, but of the things that I heard and read from the handouts and slides, I knew pretty much 95% of what they talked about already. And this is because I read. I read everything because I know there is much that I miss in meetings and presentations. Reading on my own time is how I can best get the information in these situations. Other families might have members where reading is difficult, and this type of presentation format is where they get the best information. And so, I am fine with the fact that they offer this, but diversity is about offering information a lot of different ways. UO has an extensive and informative website. They did fairly well to have accommodations set up and they did offer up many of the things I asked for. They also did not offer any push back or resistance to what I asked for. They seemed willing to make it work. They cannot be mind readers about every need, just like I can’t foresee every need I might have at an event I’ve never been to before. 

I would have had to spend hours and weeks in conversation and planning with the staff at UO to get the type of accommodations that would have really worked well for me. I did not elect to take that amount of time to do this in this particular event. I might have to in other situations.  

The Recommendation

My main point in describing this experience is to get people to see the gap between the little check box accommodations they provide and the work someone has to do to get real, dynamic and complex accommodations that work for them. Lots of folks think that if a disabled person just has an interpreter, or just has a ramp or just has a large print document, that is all it takes. They will have an equivalent and inclusive experience to those whose accommodations are set up en masse (the nondisabled and their folders and their PowerPoint screens and their parking passes and their direction signage.) But there is a lot more to inclusive experiences than that. When someone does have multiple and complex disabilities like I do, I know that it is going to take a lot of effort from me to set up accommodations that will work for myself, and that I might not even know what will work until I am there. 

Event planners need to be open and willing to work with participants to make their events more inclusive, but also not put all the responsibility on the person involved. Have some respect for the time and energy it takes to constantly have to educate people on how to be inclusive. Learn on your own what makes a digital document accessible. Offer CART and interpreting without being whiny about how much it costs and look at different delivery methods for getting those captions out to people. Embrace universal design. Build in as much accessibility as you can before people even ask for it. Describe what the event will be like up front, the schedule, setting, etc., and what accommodations are already built in so people better know what to ask for. Build in time for customizing accessibility to people with complex needs so you aren’t throwing stuff together at the last minute. Celebrate disabled people in your diversity, equity and inclusion movements as well as BIPOC and LGBTQ folks. Be flexible and open to solving problems as they happen as well. Don’t think if someone doesn’t need you one time, they may not need you again.

I was there for my kid, not really myself. So, this is not too big of a deal for me. But even so, when I think how hard I worked each second to be there and how lonely and disorienting it was for me, I think about how it must be for the disabled kids (especially those with low incidence or multiple disabilities) that come in and have to do introDUCKtion. I went to three colleges and have two degrees, back before the ADA was even a thing. I KNOW how it feels to scratch and claw your way to a degree with not much meaningful belonging and social life outside of academics. That was…30-35 years ago. It should be so much better now. College kids with disabilities shouldn’t have to feel like aliens anymore. They should be celebrated. They bring so much more to these institutions than people ever give them credit for.