Not ‘Special,’ Just Equal: The Reality of Accessibility in Healthcare
A few years ago, I considered starting a nonprofit organization focused on services for patients, helping them get accommodations they requested from someone/somewhere but were denied, and working on making places, people, and things more accessible for anyone with any disability.
That’s a lot of work, and going through health crises at the time (uncontrollable seizures, followed by a spinal tumor, taking away my abilities to move, taking a toll on my mental health because I thrive when moving), I let it go. I knew it would be an unsurmountable project, and I only had myself. It didn’t mean it wasn’t necessary because accessibility and reasonable accommodations always seem to be an issue in some way, even in professional medical facilities.
I’m profoundly deaf. What does that mean? I’m deaf to specific pitches, and I have such profound hearing loss that I could not hear a small plane fly over me when it comes to what I can hear. What I can hear is garbled noise. It’s difficult to distinguish what I hear so much that I always rely on closed captions. In my daily life, I have an app that transcribes everything in real-time.
Seems simple enough. However, the app only works in person. It doesn’t work for virtual appointments or meetings because those occur through another electronic device rather than in the room. Several doctors’ offices, especially ones in hospitals, have Zoom or other virtual services, potentially including their telehealth service. These provide closed captions. However, nearly as many do not. What do I get from such offices? The inability to have virtual appointments for things as simple as medication check-ins when there is nothing wrong.
I can’t drive because of my seizures/epilepsy; I depend on virtual appointments. Yes, I need to meet with my doctors in person occasionally, but I don’t need to for many appointments I have with them. Ironically, neurology offices, the very places that treat my epilepsy, do not offer virtual appointments with closed captioning.
Because of brittle bone disease and multiple breaks and surgeries on my hands, I can’t sign. Knowing sign language shouldn’t matter when I request closed captioning, perhaps the most basic accommodation for people who are deaf and/or hard of hearing. Not so much. In one virtual appointment with my neurologist (which I see for epilepsy, meaning they understand why I can’t drive – seizures), their staff was rude and blamed me for needing closed captions. I made sure they had Zoom with closed captions ahead of time, and they said they did. It turns out they did not. When I expressed my need at the beginning of this non-Zoom appointment, they used a text box.
When I told them I couldn’t use the text box, they looped in a sign language interpreter despite me saying I didn’t know sign language. They then, very rudely, told me they had provided me with acceptable accommodations and that it was my responsibility to work with them using the text box or sign language interpreter. The reason I don’t know sign language is the same reason the text box wouldn’t work: typing in real-time (you’d be shocked how long it takes me to type something) during my appointment wasn’t practical. After they accused me of not being reasonable, they abruptly ended the appointment. That was it. I never got past the gatekeeper and met with my physician.
Sadly, the neurology department I’ve worked with is notorious for accommodation violations. They provide options, but when they don’t work for you and you let them know, they shut the virtual (and physical) door. It’s my fault. No, it’s not. I will never feel bad for requesting the accommodations I do as they are always reasonable, even officially listed in what constitutes “reasonable accommodations.” It’s my right, but they don’t view it that way. They offered accommodations, but they weren’t the accommodations I needed. They argued they were “in the right” because they offered me something. Medical offices and hospitals are not “in the right” when they refuse specific accommodations/needs patients have. They’re not “covered” or “safe” just because they’ve offered something. (This is such an “all-the-time” battle; it’s exhausting.)
The world isn’t built for people with disabilities. It’s just how it is. This fact doesn’t bother me because it makes sense – there are so many diverse needs that break away from what the majority of the population needs. They’re not a simple list; they vary from person to person and can be unique. Just because the world isn’t built for people with disabilities doesn’t mean they should bend to this fact. It means they should change it.
I’m always polite when I ask; you should be, too. I work with others and give them a heads up, whatever is necessary or professional. I’m diplomatic and look for ways to compromise. I encourage everyone requesting any accommodations to be/do the same. Honey is always better; smoother. However, if honey isn’t effective, I have no qualms about bringing out some extra-strength vinegar. The world isn’t built for me, so I build it for me. I won’t apologize, and if someone is in my way, telling me my world will remain as is, they’re done.
Understanding accessibility and making things accessible is so important. Understanding people need different accommodations is just as important. People have unique fingerprints; while our disabilities aren’t our fingerprints, they match this comparison. I needed extra time writing and taking tests in school because of my hands (like hearing, this is a resounding theme). Sometimes, I was given crap or was accused of “cheating” because I took the test shortly after others (tests were proctored, and while most of the time they were at the same time, this wasn’t a guarantee). Of course, I had a lot to say back, and I did, even if it was to an adult.
When I lost my hearing, things were more… just more. My needs changed as my hearing loss spiraled. Hearing assisted devices, reading lips while others repeated themselves multiple times, and then exclusively closed captions. Each time, I got flak from various parties. What sucks is they were in professional settings, whether at conventions or, again, in medical facilities and/or departments. (People have no idea how rampant this is. Yes, I’m a professional patient and often in these places, but they’re not my life, and I lived a lot before when they were “less” while my hearing was still an issue. I dare say that accessibility and denied accommodations are the worst in healthcare settings. The irony baffles me.)
Accommodating people with disabilities is not providing them with “special treatment.” I’ve been told this or overheard it when I could still hear or secondhand, more times than someone has said, “Okay.” I’ve been called demanding. Fine. I’ve been called other things along the lines of ‘expecting special treatment,’ such as princess. I’ve been called a bitch. I’m fine with those, too. I’m not fine when someone (a professional facility) doesn’t accommodate me, often when I’m in-patient in the hospital. “Some patients” and “most patients” are phrases that do nothing for me, so I don’t blink. I’m not “some patients” or “most patients.” For other patients who have come across these phrases or spent time in hospitals or see doctors often, note that no one ever says, “all patients.” There’s a reason for that. They can’t. It’s such a bold-faced lie that even they won’t go there.
Many others I know don’t speak up because they’re constantly pushed back. Whether it’s discomfort or fear, they stumble through, trying to accept the inaccessible. Then, I’ll be louder for them. Some of us are. Sometimes, it’s all-consuming. Sometimes, it’s a job. Sometimes (or often), it’s infuriating. It’s always necessary. It always has a reason and importance. Trying to work with others is crucial, and sometimes that’s enough. When it isn’t, go into a situation expecting to be called a bitch and wear that mantle proudly.
Image descriptions, parking and/or sitting up front at events, service animals, sign language, closed captions, bathroom access, writing assistance, and/or extra time are non-negotiable. So are several others not mentioned above. I hope this doesn’t come across as a rant. I hope others who do not have disabilities try to educate themselves or understand that when someone asks for an accommodation, they’re stating a need, not a desire, and while they’re asking, it’s not up for debate. People who need accommodations don’t shy away from asking. Don’t take “no.” If you’re afraid of arguing, learn.
If you’re afraid of being called a bad word, rejoice. Names are just used by “sore losers.” You win. It’s not a game and shouldn’t be considered one, but when someone says something nasty about me, I smile. Perhaps they’ve only encountered hot air before, but I’m not hot air. I’m f*cking fire. You should be, too.
(In our upcoming “More” section, there are patient advocacy and consulting services as well as various courses surrounding being active in your treatment plan, knowing your body, learning and embracing the word “no,” and how to be a b*tch, the right way.)
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