Hattie Cousins

@hattie-cousins | contributor
Ari Cousins is a U.K.-based autistic student who is adjusting to the reality of having Ehlers-Danlos syndrome.
Hattie Cousins

Things I Wish People With Ableist Beliefs Understood About Disability

I’ve honestly found that one of the hardest parts about chronic illness and disability is how people react. We aren’t “superhuman” – whatever the British Paralympics advert says – nor are we “subhuman,” for the different ways we engage and interact with the world. We are just human. We deserve to be treated properly: not with your pity, but with your respect. I tried to pick out the top 10 things I wish people with ableist views understood about life with a disability, but I’ve definitely missed some – feel free to suggest more in the comments below! 1. Someone using mobility aids or other assistive devices in public does not automatically make them “lesser” than you, or than invisibly disabled people. Nor does it mean you can pity them. There’s so much stigma attached to using assistive devices in public, and I’ve heard time and time again that someone who needs a wheelchair is reluctant to get one because of how people will judge them. The one I really don’t understand is the judgment that motorized scooters and wheelchairs are “for lazy people,” whereas having a manual wheelchair means you must be “really sick,” and so you therefore become an object of pity. That isn’t true. Whatever assistive device we are using, it is the one best suited to our requirements and means. 2. Someone being “weird” does not mean you get to treat them badly. Chronic illnesses can make us do some stuff that appears a little odd. Regardless of whether the behavior is involuntary – like muscle spasms or tics – or voluntary – for example, the notable occasion where I couldn’t take standing anymore and so carefully lay myself down on the floor of a shop – we know. We know it’s not “normal.” Staring, whispering, and pointed comments are hurtful. We’re getting by in the best way we can. Don’t tell us to fit in with your parameters of “normality” to make you feel more comfortable. 3. I have limitations. They are not made-up excuses. If I say I can’t do something, I either mean I physically can’t, or it will cause me pain/ fatigue that I could otherwise avoid. I am not being lazy by saying “no.” When I say something is too much, it’s not OK to push it even a little bit further. 4. Just because I can do something once doesn’t mean I can do it a thousand times, that I’ll be able to do it tomorrow, or that my chronic illness / disability has gone away. Often we’re struggling with variable or progressive conditions, or have flare-ups of symptoms. What we can do changes hour by hour, day by day. Please don’t hold us to what we were able to do yesterday: it just isn’t realistic. Especially as chronic fatigue tends to factor into things – we could actually still be recovering from whatever it was we did yesterday. 5. Me accepting my limitations doesn’t mean I’m “giving up” or “giving in.” All it means is that I’m refusing to adhere to society’s rigid beliefs on what I should and shouldn’t be able to do. When I “focus on what I can do” that should mean finding workarounds and things I can do in place of things I can’t do, not ignoring things I can’t do and pretending I’m fine. 6. I am not being selfish by prioritizing my needs over your wants. This goes beyond chronic illness – selfishness is prioritizing your wants over someone else’s needs. But we often get told we’re being selfish when we assert our needs, especially when they are an “inconvenience” to others. If we say we need something, we need it, and those needs are of prime importance to our well-being and functioning. 7. I am not exaggerating, or making it up. This often comes up in reference to pain. One time when I tried to articulate my pain to my mother, she just said “maybe you have a low pain tolerance.” If something affects me X much, it is X amount of a problem, regardless of what you think my “pain threshold” or “pain tolerance” should be. If something hurts like a 7/10, it’s a 7/10. In fact, it’s normally the other way around: chronically ill and disabled people tend to minimize their pain. If our symptoms seem unbelievable to you, that might be because you’re unfamiliar with our condition. I assure you, we’re telling the truth. 8. I am not your inspiration porn. We don’t exist to make you feel better about yourselves. We don’t exist to provide you with motivation. It isn’t automatically “amazing” when we achieve something, nor are we “so brave” just for daring to live in a world that isn’t built to accommodate us. We are human, doing everyday, human things. This kind of “what’s your excuse?” thinking often crops up around the Paralympics. Since there are disabled people who have trained hard to become amazing athletes, other disabled people may be viewed as lazy for not achieving similar things. 9. Comparing your acute problems to my chronic problems is invalidating, tiresome and honestly just a D*** Move™. No, your experience with tendonitis of the knee three years ago does not give you a window into my experience, where I am in constant knee pain, have chronic tendonitis from limping, and frequent knee subluxations and dislocations. I know you’re trying to empathize with me, and I appreciate your attempt to get some sense of understanding of the pain I’m in. But honestly, it’s not the same. 10. Unsolicited medical advice isn’t helpful. No amount of sunshine, exercise, kale, yoga, [insert current health fad here] is going to magically restore me to abled status. I don’t care if your aunt’s ex-husband’s second cousin’s friend’s daughter had a similar condition and defeated it with the power of positive thinking and vitamin supplements. I promise you, we do our research – those of us with rare conditions often know more about them than our doctors. We’re often forced into a position where we have to bring up possible solutions, so we know what’s available and likely to work. On a related note, our medications and / or assistive devices aren’t “making it worse.” Medications in particular have their side effects, but they have been prescribed to us for a reason. We know you probably mean well, but pushing various treatments on us can make us feel like we’re not trying hard enough to be better.

Hattie Cousins

A Letter to My Parents After I Was Diagnosed With a Chronic Illness

I know it’s hard for you to see the child you’ve cared for facing challenges and to know there’s not much — if anything — you can do to help. I know you believe you’re doing all you can to make my new way of life just a little bit easier. I appreciate the early-morning starts and long drives to physiotherapy. I appreciate you’re willing to drive three hours just for a 20-minute doctor’s appointment, and I thank you for the hot water bottles and hugs you offer on bad pain days. I love you for your optimism, for your faith in doctors that I’ve already begun to lose faith in and for your belief that my condition can dramatically improve. Please know that I’m not depressed and/or being pessimistic when I contradict your beliefs — I’m being realistic. Many doctors aren’t knowledgeable about my condition, and some dismiss it out of hand. I know I can improve my quality of life with assistive devices (like splints and braces and, yes, even my cane), physio and pain management, but that doesn’t mean it’ll go away. These things are about managing my illness, not curing it. Acknowledge that. When you say things like, “Focus on what you can do, not what you can’t” and “You rule your disability, your disability doesn’t rule you,” you don’t see that what you appear to mean, at least to me, is “The only disability is a bad attitude.” No amount of positive thinking is going to cure me. I am not “reliant” on my assistive devices, they enable me to do more than I could do otherwise. They don’t limit me, they empower me. Accept that. And finally, please don’t praise me when I push myself too far for you. I would have been proud of those extra hundred yards I walked, too, but I ended up paying for it later as my pain levels rose from a 5 to an 8. I know I have a habit of pushing myself too hard and pretending I can do more than I can or that my pain levels are lower than they are. Please help me look out for myself. Acknowledge that my abilities vary from week to week, day to day and even hour to hour. Ask if I’m comfortable with doing a task or offer to help if I appear to be struggling. Above all, this illness and my ways of coping with it don’t make me weak. I am #spooniestrong. Lead photo source: Thinkstock Images