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.