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

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. 

My fingers pounded on the keyboard angrily as tears of frustration ran down my face. A call service for an organ transplant coordinator had just hung up on me for the second time that day. This was after weeks of trying to get in touch with her on MyChart and finding that my message thread was expired. I can’t initiate conversations with her, she can only initiate them with me. After 30 days, the thread is gone. When I do get a chance to communicate that way, several items have accumulated, and I rush to get them all in. But there is a character limit. So I spend an hour cutting back niceties and prioritizing, letting some things fall to the wayside. When I send in my carefully crafted, concise list of questions, days may go by before I receive an answer and then only one of my 3 questions is addressed and I start over again. (I once participated in a hilarious online discussion where autistic folks complained about how neurotypicals can only handle written communication in very small one-issue chunks and how they had to accommodate the “typicals” on this issue lest they think the autistic folks were mad at them. I related. Disabled people work nonstop to cater to the needs of the mainstream culture.)

Written communication is all I have, though. And I was not being given any consideration of this fact. At this moment, a question I needed answered for weeks went unanswered again and I was at the end of my rope. I felt helpless. I feared the inability of the medical profession to accommodate my communication needs was going to cause my premature death.

I am a Deafblind person with end stage kidney disease. I am biding my time carefully, waiting for a kidney transplant. I am also the co-owner of an assistive technology training company. Because of this, I am in a much better position than many other deafblind people with a chronic disease to communicate with medical staff. I have access to the latest and most advanced assistive technology. I am a relatively affluent and educated user of this tech. I am also lucky that my spouse and business partner is one of the most knowledgeable and prominent assistive technology experts in the country, so I have built-in assistive technology customer support at my beck and call nearly 24 hours a day. I have more braille displays, smart devices, and assistive tech software than I care to admit available to me. I am a strong believer and a constant user of assistive technology.

Yet, I couldn’t communicate with my medical providers.

My usual means for talking to most people was to use texting. I am a “blind first” Deafblind person. A rarity as most Deafblind people have Ushers Syndrome, which causes deafness at birth and diminishing vision later in life. I was born with Alport Syndrome, which causes diminishing vision, hearing and kidney function. So, I am not culturally Deaf. I know a rudimentary level of ASL, but I am very proficient in braille and in using digital braille displays. Although I have some vision and hearing, I am most comfortable with the written word via braille. Texting and emailing works for many things, as well as using the texting functions in apps like Uber and OneCapApp for captioning. This covers a lot of communication ground for me, but there is a wide communication abyss in the medical field. Part of this is due to the privacy regulations of HIPAA, which many medical professionals interpret as not being allowed to email or text. (Ironically, faxing is still a mainstay of medicine. As if your medical records sitting on the desk of some receptionist in the waiting room is somehow private.) When I was younger and had fewer medical needs, this was all a minor inconvenience, but now, I feared…this lack of accommodation could end up killing me.

So here I found myself, furiously crying and angrily pounding out a desperate email to Chad Ludwig, the Deaf director of Bridges Oregon, a nonprofit that advocates for the civil rights of Deaf and Deafblind folks. I wrote:

I am really frustrated right now, and I am looking for solutions for myself and thought about this program. I’m not sure if you know that I have kidney disease and am waiting for a kidney transplant. There is a lot of communicating I have to do in healthcare and healthcare has always presented a special challenge for me in regard to deafblind communication. There is no emailing or texting allowed due to HIPAA. I communicate a lot via MyChart and TTY relay. It sometimes works fine, but it sometimes just completely breaks down to the point where I really feel my health is compromised. MyChart only lets me initiate conversations with certain people so others don’t get my messages. There is a character limit and message threads expire after a few days. TTY relay has its problems in that people are afraid of it, hang up on it and don’t really want to talk a lot on it so I get incomplete information. I’ve also had some weird communication breakdowns on it. Once I was almost kicked out of the program because they said I told them that I refused to wear a mask. I don’t even remember being asked the question of whether I would or not (of course, I would.) Today, I tried to call a transplant coordinator using a Compilot (ALD that connects to my hearing aids) and She couldn’t hear me, then she called back, and my compilot wouldn’t pick up the signal, and its just been a big mess. I am very worried that I will miss a call to get a transplant because of some stupid communication issue and I will just get passed over.

A few years ago, Chad had asked me to make a public statement to the state legislators in support of a bill to provide Communication Facilitators to Deafblind folks to help them make phone calls. This is a live person who can act as an intervenor on behalf of Deafblind folks when using the telephone. Although the bill passed, a lot of people didn’t get it. When talking to others in the Assistive tech field about this bill, the first question they all asked is, “Why is that necessary? There are all kinds of tech solutions for this.” Putting aside for the moment that there are always going to be people who don’t have access to or can’t use assistive tech, this seems like a good point. There is plain texting like anyone does. There is video relay where an interpreter relays the signs and voice between deaf and hearing people over video. Text relay (sometimes called TTY), where a relay operator types out the voice for the deaf or deaf blind person and voices what is typed for a hearing caller is what I have come to use often. I read the text with a braille display, a device that turns what is written on a computer screen into braille. In a pinch, I will blue tooth my hearing aids to my phone to amplify the sound. It is not a great solution for me because I have to work extremely hard to hear the conversation anyway, and after a few minutes it becomes physically painful to my ears. I mostly use this for my dad, who is too old to not be easily confused by the other methods, but when all else fails, I will give it a try. But in the medical setting for me, it was all failing on a regular basis. Appointments took weeks to set up. Miscommunications occurred often. More times than not, I was just being ignored.

Assistive technology is fabulous. For those who do not communicate typically, it can be the bridge between us and the rest of the world. But I have come to find, it only works well if others–and by others, I mean the nondisabled…I mean YOU–are willing to be flexible enough to work with it. As I go around in my work and advocate for disabled folks to have access to assistive tech devices and software and to be trained to use them…I am starting to see that I am missing a huge piece of this. Assistive tech only works when they are also understood and valued by the nondisabled as well as the disabled. Assistive technology helps us to meet you halfway, but you have to come halfway to us. You have to do your part to include us by understanding how we do things. I don’t mean that you need to understand every little aspect of how to work a braille display with a speech reader and a TTY operator, but you do need to be open, curious, and flexible in working with us and our tech solutions. You have to work with us to work with you and make it work. You have to be more “Can Do” than a lot of you are. It can’t always be about your convenience and comfort all the time.

I see this inclusion gap in other areas besides healthcare. We have clients are offered jobs where they will need a screen reader to access the computer. My company’s role is to come in and install the software and provide customized scripting, if needed, to make the screen reader work at maximum efficiency for the employee. (And often our services are provided free to the employer through funding from a vocational rehabilitation or insurance agency.) This is a process that may take a few weeks. But often we run into employers who put up barrier after barrier to getting this (free!) service, that can not only help this employee but others in the future, and even customers! Companies won’t give us security clearance to install proven technology on their system, or they don’t want to wait for the scripting to be done. We also come in sometimes when an employer has updated software so the scripting has to also be updated. But rather than wait for a few hours’ work to get done for an experienced, loyal, and hard working employee, they dismiss the employee.

People expect assistive technology to just turn on and work perfectly, and that it will in effect make the person using it nondisabled. That is just not how it is. Many years ago, I told my new boss that I was in the middle of getting new hearing aids because my current aids were broken and to please be patient as I wouldn’t get them for a couple of weeks. He spent the time making comments like he was counting the minutes until I would no longer be hearing impaired. Seeing a need to adjust expectations, I explained to him that my new hearing aids would be an improvement, but I would still be deaf, and he knew I was deaf when he hired me. When I got my new aids, he was disappointed that they did not make me magically hearing. I still needed amplified phones. I still needed captioning for some meetings. And he still had to repeat things to me. Assistive technology is not a “Get Out of Accommodating Free” card. It is a means, but it does not let the nondisabled off the hook or get them out of a responsibility to provide disability accommodations.

As we have all learned a lot about remote work and video conferencing over the last few years, the use of assistive technology has opened a lot of doors for people with disabilities to participate. Live captioning on zoom calls has helped more Deaf people be included in work and social events that they have been historically left out of. But again, the tech is only as good as the people who accommodate the tech. In a zoom call that is captioned, the captions are never going to be as fast as the speaking. They also cannot transcribe 6 people talking over each other. In order for all people to be included, a meeting facilitator has to run a tight ship. There needs to be rules about only one person speaking at a time. Extra wait time needs to happen to that all people can catch up and comment or ask questions. If someone uses alternative/augmentative communication, there needs to be wait time for them to have a chance to have their voice heard. Yes, that may mean a few moments of awkward silence. Believe it or not, this won’t hurt you and you will get over it. The tech only works if the participants have an inclusive attitude.

Another classic example is website and app accessibility. If websites and apps are not developed following accessibility guidelines, people are left out. If your videos don’t have captions and transcripts, or if your buttons are all labeled “button” so a screen reader can’t discern any different between the functions of these buttons, if your forms are not formatted so the fields are labeled and people know where their name goes and where their address goes, you will lose people who can’t access your site.

In looking for a better solution for my health care issue, I ran across an app called AlloCare by CareDx. It is especially made app for transplant patients. It has a means to keep track of medications, test results, text communication with medical staff and other important functions. But I couldn’t even make an account on it. I got to an incorrectly coded checkbox that I had no way of checking with my braille display. And boom! The app has just excluded every single blind screen reader user. When I reached out to the company, they seemed receptive at first but also said they had to “check with legal” and then I never heard from them again. I still can’t use that app. There are doctors that are implanting insulin pumps in blind diabetics who can’t even use the apps to monitor and adjust the pump! An easy bit of debugging and adding a few accessibility features would make these devices accessible and life-saving, instead of a detriment to health.

Assistive tech is often expensive and takes diligent work and patience to learn and use. This is a burden that disabled folks take on and fight for because technology can be a godsend and open a world of possibilities. But skills and tech can only get us so far if others don’t participate in meeting us halfway and doing their part. I can have my TTY, computer and braille display all set up, but if I constantly get hung up on because people either don’t understand or are uncomfortable with TTY relay, or if they refuse to set a time with me to communicate (as I cannot just BE in constant vigil for your call in front of my computer, relay app open and hands at the ready on braille keyboard) then I am excluded and all the work I have done to get the proper tech and learn it is for nothing.

I always remind people that accommodations are not just special things for disabled people. Everything human-made is an accommodation for someone. When your employer provides you a chair, desk and computer with monitor, that is an accommodation. The fact that some of us need a screen reading software instead of a monitor is not a “special need,” it is a different accommodation to access the computer. A doctors office provides a building, a door and a seating area. All accommodations. By having an automatic door and a ramp, they have widened their net to accommodate more people. If a presenter provides a stack of slides on a projected screen, that is an accommodation. It is not that much more difficult to describe those slides and provide them as an email attachment ahead of time to a deafblind person. Nondisabled peole often balk at providing “special accommodations” for disabled people while ignoring the enormous amount of accommodations that are always ready for them without even having ask for them. This entitilement gets at the heart of the Diversity, Equity, and Inclusion that organizations say they believe in promoting. DEI takes work, and this work includes not only providing assistive technology solutions, but understanding them and participating in their success.

Chad Ludwig informed me that Bridges Oregon has just signed the contract for the Communication Facilitator program and hopes to have it running by late summer. I’m happy, but it seems like yet another (in this case, high cost and low tech) thing I have to manage to accommodate others. Even though I have all the assistive technology I need to communicate with people, their refusal to participate in my tech solutions mean that I will have to get a facilitation communicator when they become available in my state. I will have to forgo my privacy and find, hire and train a facilitator and organize and set aside time to work with them just to make phone calls. In the meantime, I finally asked my husband for an hour of help out of his day once a week; which equals lost wages when you own your own business. I got more done in one hour with him than I have gotten done using my assistive tech in the last 8 weeks. Just because people were willing to talk to him when he called them.

Maddeningly, I have yet to come up with a solution for the most important phone call I may ever receive. This is the call to tell me that an organ is available to me that will save my life. I will have less than 20 minutes to respond and an hour to get myself to the hospital. Of course, there are solutions. The tech is all there. Vibrating pagers, texting, etc. But pardon me for being absolutely paranoid that someone’s ignorance or refusal to deal with me on a TTY relay or someone talking on my behalf or hang up when I call them back. When I have expressed my concerns, I have just gotten shrugs. People don’t seem to understand that this isn’t just happening once in a while or just “by accident,” It is a systemic civil rights violation. It is baked into the policies, attitudes, regulations, and procedures of organizations and it is discriminatory. It is constant and pervasive enough that worrying that I will miss the organ call is very real. Working with people who use assistive technology is part of DEI, and it’s about you just as much as its about me.