Our society is pretty ableist. If you’ve never heard that term, it means when you prioritize the needs of able-bodied people over those with disabilities, either through blatant discrimination or by indirectly excluding them from participating in everyday life. If you’re an able-bodied person who has never heard the term that’s a pretty good example of ableism actually. It doesn’t affect you, so you aren’t aware of it. There are a lot of activists fighting ableism and seeking visibility for themselves and their work.
They’ve made some headway. We have things like wheelchair ramps and priority parking because of that work. But, as the Atlantic reports, ramps didn’t even become commonplace until 1990, when the Americans with Disability Act (ADA) was passed. That’s not even thirty years ago. It’s also essentially only enforced when someone litigates for change, putting the responsibility on disabled people to make everything they need happen. Things have been improving, but slowly. Right now there’s another conversation about the nuances of disability activism happening on Twitter that everyone should take a look at.
Buzzfeed News reports that a woman named Madeline Dyer, who goes by the Twitter handle @MadelineDyerUK, tweeted about Ehlers-Danlos Syndrome, which causes “joint hypermobility, skin hyperextensibility, and tissue fragility.” It’s also what is called an “invisible disability.” You wouldn’t know Dyer has these issues by looking at her. She shared a story about how a woman at the grocery store wouldn’t believe she had a condition and pressured her to do something dangerous for her body:
Something that really sucks about having an invisible disability or illness is people automatically expect you to be able to everything an able-bodied person can. And then they’re surprised when you can’t…
(This is gonna be a thread, by the way…)
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
I have a loose spine due to Ehlers-Danlos Syndrome. I can’t lift medium or heavy items.
One time, I was in a supermarket, about to pay. I had items in a wheelie basket, and the lady at the checkout told me to lift the basket onto her counter.— Madeline Dyer (@MadelineDyerUK) August 28, 2018
When I told the lady I couldn’t lift it, she immediately wanted to know why (because I look healthy). I shouldn’t have had to explain myself, but I *felt* I had to. I told her my spine is loose.
And you know what she did? SHE LAUGHED AND TOLD ME THATS NOT POSSIBLE.— Madeline Dyer (@MadelineDyerUK) August 28, 2018
The lady at the till was very patronising, saying she’d have to “walk right around” to my side to lift the basket up, then “walk all the way back” to do something she still believed I could do easily. I felt embarrassed, ashamed, and very close to tears.
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
Due to my chronic illnesses, shopping alone is a big deal for me. Not only can my joints dislocate easily, but I also have #Dysautonomia. Standing still (while queuing) makes my heart rate way too fast, and this often causes me to faint. I often need to sit down rather than stand
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
But just because you can’t SEE something, it doesn’t mean it’s not happening.
Some people are great about invisible illnesses and disabilities. But some people are not. And a lot of people need to be kinder.— Madeline Dyer (@MadelineDyerUK) August 28, 2018
(I struggle a lot with feeling guilt over what I *think* I should be able to do, and being called out by strangers for doing something or for not doing something for medical reasons is humiliating, embarrassing, destroys confidence, and lowers feelings of self-worth.)
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
But you did X before so why can’t you now?” is a question I hate as it questions the validity of both our illness/disability and what we are telling you. We know our limits. We know what we can do. Trust us when we tell you.
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
(Oh, wow, please excuse all the typos in this thread!)
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
Thus, because the way I did it was different (and adapted so I could manage an everyday task, given my disability), I got humiliated.
— Madeline Dyer (@MadelineDyerUK) August 28, 2018
Dyer’s points are so important and also often unknown: lots of people have symptoms that recede and return, there are many conditions you’ve never heard of and don’t understand, you can’t tell where someone is at health-wise just by their appearance. Others started sharing times when they’ve had their disability ignored because someone had no idea what they were talking about:
I havw Bipolar disorder and Hypothyroidism which I'm pretty sure is actually Lupus cause I'm showing more symptoms that lead up to that and it runs in my family.
I constantly told by people who don't know me that I'm too young to have any problems..— Smol Tired Fren (@icanndrawstuff) August 28, 2018
At one point I started lying about the extent of one chronic illness to avoid these exchanges about another because asthma is still something people get as "real." Getting super tired of having to weave a narrative so that how my body works "makes sense" to people.
— K8 hearts tacos and nuance (@katealicesandry) August 28, 2018
I also have EDS, and the one that gets me is "Oh my friend has that", followed by either all the things they can do that I know I can't, or how much worse they are than me. Not helpful to compare, experiences of the same condition can be wildly different.
— Eleanor Pattison (@Writer_Nell) August 28, 2018
Or lean. Because I’m overweight I’m always called lazy or told I need to excercise more and the pain will go away. Not even the people in my family other than my husband actually believe how painful it is for me, and that while my weight may not help it’s not the cause of my pain
— Jay (@jaydott1409) August 29, 2018
I have lupus and hypermobility, which conspired together to cause a tear in my dura and a huge spinal fluid leak. I get similar confusion from people around me, and it gets exhausting having to explain.
— Butterfly (@FLButterfly7) August 28, 2018
There have been so many situations where I’ve kept quiet and tried to keep going because I don’t want to have that conversation again, and then you have a good day and start doubting yourself and how you felt on all the bad days. And everyone thinks you’re ‘too young’ to be ill
— Charlotte Walford (@Lottieknits) August 29, 2018
The overall lesson is to not be so judgmental in general! If someone tells you they’re sick or physically incapable of something, believe them.