wheeliewifee:

An Open Letter To Those Without Invisible Disability Or Chronic Illness …

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

Portal, 2008

“My studio practice has, for sometime, centred around finding ways to understand and represent my embodied experience as a wheelchair user, opening up profound issues about methods of self-representation and the power of self-narration in challenging the nexus of power and control that created the ‘disabled’ as other.”

copyright Susan Austin

disabledbyculture:

disabledtalk:

As someone with a disability, one of the things I often hear is assumptions about performance.  Usually it’s no one who knows me, or an overheard conversation, maybe it’s a scrap of overheard conversation or a side-note in a newspaper editorial.

What I hear is fundamental lack of understanding on the topic of coping.  I’ve heard it from doctors, I’ve heard it from therapists, I’ve heard it most of all from people simply conversing. 

When you’re doing - anything, no matter what it is - and you have a disability, there’s this tendency of assumption on the part of others that even if it comes back later, for now, your disability is gone.  Poof. Vanished.  Sure, while you’re lying in bed that afternoon due to stress and exhaustion you’re disabled, but three hours earlier, out grocery shopping, they see you and you’re fine so what gives?

Here’s what gives.  I can’t speak for all, but for most disabilities there’s a cost of coping.  There’s a cost of maintaining, of pushing back symptoms long enough to do sometimes even the most basic of things.  When you’re getting your groceries you aren’t just getting your groceries, you’re also managing your energy and stress levels, monitoring your body, and yes

coping

The unseen cost of coping is what most people without disabilities don’t understand.  That even when you appear to be asymptomatic, there’s a cost.  That the ability to cope doesn’t necessarily mean you’re any less disabled, not when that hour long grocery trip costs you hours, or days, in recovery.  So the next time you ask your disabled friend, or family member, or client, or patient, or student, why they can’t just do whatever it is you want them to do because you saw them at the grocery store the other day so they’re obviously capable of coping?

Please just remember that we pay for coping, just like we pay for not coping.  The cost may be hidden to you, but it’s not to us.

-anon submission

(bolding by mod)

I have a couple of thoughts about this… (1) Yes. There is usually a great deal of hidden physical and/or cognitive effort involved with coping with a disability. In my case, part of the difficulty is directly related to the nature of my disabilities and another part is directly related to the ableist nature of the society. (2) People have fluctuating impairments (aka uneven, variable, inconsistent impairments). It should be assumed that they do. It should be assumed that whatever the disability, there are going to be moments during the day, during the week, during the month when it gets worse, and also it should be assumed that the disabled person is the absolute best judge of when those times are. Everyone from friends to family to employers seem to have a really hard time comprehending that coping uses up cognitive/physical resources, and that because of the amount of cognitive/physical resources expended (and other reasons), one’s overall degree of disability can vary.