Let’s talk priorities. We can send rockets into outer space when we choose to. We learned how to send virtual pictures of poop anywhere in the world instantly from hand-held devices. We have a vast interconnected system of paved highways, we have industrialized agriculture, we have airplanes for crying out loud. Flying machines, and we use them every day. We can do some pretty amazing things when we set our minds to it.
I’ve spent something like 18 years in a school of some sort, most of which were focused on general education, the things everybody’s expected to know. Some of that was focused on biology, including human biology. Some of that was focused specifically on health. I learned about the difference between aerobic and anaerobic exercise and what RICE stands for and I was required to pass a swimming test to graduate from high school. When I became disabled I had no idea what to do. It hadn’t been covered.
Disability could be covered in school though, thoroughly, at all levels. Living with it. Making the mental adjustment from being able-bodied to being disabled. An overview of what services are available for people with disabilities, and maybe a walk-through on how to apply. Dispelling myths. Etiquette on how to interact with people with various disabilities: do try to get down to eye level with someone in a wheelchair so they’re not stuck craning their neck, don’t inundate someone with a chronic illness with unwanted advice about supplements and alternative medicine.
When I first got CFS, all I knew about becoming disabled was that when you have health issues you go to the doctor. So I went to the doctor. I got lab tests, I got a lot of things ruled out. When it got to the point where I sometimes wasn’t showering for days at a time because I couldn’t stay standing for that long I said so. I think on some level I assumed that would trigger some automatic response from any doctor: oh, you’re having trouble with activities of daily living, ok that’s a problem, let me refer you to someone who can get you some help with that. What happened was…nothing really.
Doctors can’t possibly be unfamiliar with the basic concept of disability, can they? Surely they know that some people 1. have health problems that aren’t going to get better any time soon, if ever and 2. can’t do necessarily daily-living stuff on their own as long as those health problems persist. Surely they know that these people still need care. Surely they know that most of us don’t know who to turn to other than our doctors. Surely?
I got told it might be depression. I got massively offended at this, it seemed dismissive (as well as just inaccurate.) I sometimes get embarrassed about getting offended: if I believe depression is a real, serious illness, and I do, then why did getting told “maybe it’s depression” feel like my real, serious illness wasn’t being taken seriously? Then I read this and first, it kind of blew my mind, and second, it made it all make sense. If my fatigue that kept me from showering was rooted in depression, that wouldn’t suddenly mean I was capable of showering. I would still need help with the, you know, Activities of Daily Living and Instrumental Activities of Daily Living. (And I still wouldn’t necessarily be able to get myself to a weekly therapy session, thank you very much.) When I finally called about getting therapy, because it was becoming clear I was having depression issues on top of my CFS (because I was being treated like I was able-bodied when I wasn’t), I talked to a nice, helpful woman who pointed out that some therapists made housecalls but there was a waiting list. I was so relieved. It was the first time anybody I’d seen or talked to really acknowledged that yes, some people literally can’t do normal things because they’re too sick. It was the first time that I knew I was being believed.
(Because I was being treated like I was able-bodied when I wasn’t. Is there a word that’s like “gaslighting” but doesn’t imply intent? It was very unsettling and somewhat rage-inducing to know something is true (I had become disabled) and have everybody around me act like the opposite was true.)
I have sympathy for why doctors respond the way they do. I understand they want to help, and getting someone assistance with household and personal care stuff doesn’t seem nearly as helpful as curing them. It can feel like giving up. To some degree it felt like giving up to me too, and some of my depression was from having to let go of the idea that a return to full health was just around the corner. But within a month or so I started feeling dramatically better, not because I’d been cured, but because I started learning to live where I was. This is when I started using my folding stool, when I bought a rolling cart to do laundry, when I tested out washing dishes in a plastic basin sitting down (even though I only ever did that like once.) When I learned that I could shower sitting down.
From the outside it looked nothing like a cure, but it helped me feel better as much as a cure would have, because I was doing things I’d thought I couldn’t do any more. I could only do that when I switched from trying to get healthy again as fast as possible, to learning to live with the way things actually were.
Circling back to where I started. Priorities. When I was healthy and had a lot of physical and mental energy and a reasonable amount of free time and had an activist mindset as well, I spent about 0% of my time thinking about disability and accommodation. I didn’t really read up on disability rights at all. While there are some individuals who aren’t disabled themselves who spend a lot of time trying to figure out how to help people with disabilities (either from a “helping” or a “justice” perspective) the vast majority spend very little time thinking about it. I think I probably spent more time thinking about whether it made sense to terraform Mars, than I did thinking about how we could make life better and more just for disabled people on Earth.
It doesn’t have to be that way.
When there’s a “special needs” kid in an elementary school or preschool class, instead of trying to get that kid put somewhere else we could understand that part of the curriculum for young children is learning how to get along with all people, especially people who seem different or difficult at first. And that that starts with the teacher modeling inclusivity. (Or perhaps with principals, state assessment standards, etc acknowledging there might be some actual benefit to having special needs kids in mainstream classes, to the mainstream students, that might counteract a reduction in learning in other areas, because yeah some kids can make it really hard to teach.)
When we teach health, we can teach about disability. When we teach social studies, we can teach about disability. (I read something just the other day that I already can’t find again, about the distinction between “impairment” and “disability” — not being able to walk up stairs is an impairment, not being able to get to an event because stairs are the only form of access is disability. Likewise hearing/communicating etc.) When we teach history, we can talk about what the lives of everyday people were like in different times and places, including people with disabilities. When we teach manners, formally or informally, we can include things that are specific to people with disabilities. When we teach subjects like literature and philosophy, we can treat disability as a central part of the human condition and value what people with disabilities have to say about their own experiences.
When we teach medicine, we can teach doctors to be alert to when a patient needs help living-with rather than or in addition to recovering-from. I think if we get disability awareness sufficiently ingrained into our culture though, we won’t need doctors to help with that because we’ll already all be familiar with what resources there are and how to get them, just like I know that I can get a marriage license from City Hall even though I’ve never needed one before. It’ll be just another life skill.