There is something I'd like to blog about today, but I want to be careful about how I say it.
Having a disability is a 24/7 gig. What I mean by that is that for many of us with disabilities, our condition doesn't change. That's certainly true with a spinal cord injury. If there are things that I can't do on Tuesday, I'm not going to be able to do them on Thursday.
On the other hand, it's not useful to think of disability as an illness. Some people still do and that gets in the way of understanding about disability and having an impairment(s).
The reason I'm talking about this is because I often have conversations with nondisabled people who equate sickness and illness with disability. Sometimes they will even say things like "Well rest up and you'll be able to do x,y or z" or treat me like I'm sick and dying. The reality is that, no matter how rested I am, I'm paralyzed. I can be fresh as a daisy and I'm still going to be paralyzed. It is also true that I can be healthy as a horse as they say and not be able to button a shirt. (Neither can a horse, when you think about it.)
This is where a preprogrammed response of pity comes in and it's why I'm hesitant to talk about this. But let me explain that I don't feel bad about being paralyzed. I don't feel overwhelmed when I wake up in the morning because I know I'm paralyzed. I know I'm paralyzed when I go to bed and when I wake up.
I think because living with paralysis or other impairments is outside the scope of ablebodied existence, people sometimes think of disability as illness. it is within their experience and maybe they're thinking "Oh yeah it's like having the flu." It's not because the flu is a temporary state and when you have the flu you're also sick. A disability is a permanent state and you are not sick.
As long as we think about disability as "sickness", we're going to have all kinds of misunderstandings and barriers. Who is going to hire a sick person, for example? But when you see a person with a disability as someone who does things in a different way because of an impairment, that's a whole different approach. We can even start seeing people as resourceful and creative.
And the other thing is maybe we could all stop waiting to be cured before we work on quality-of-life issues. If you think of disability as temporary sickness waiting for a cure, then there's a resistance to providing what people need for their impairments, like housing. After all, the goal becomes a cure, not maximizing people's potential as they are. This is not to say that working toward cures is a bad thing. Of course it's not. It's only when it's done to the exclusion of putting resources toward quality-of-life issues in the here and now.
[The links in this post are from BADD 2009 - you can find more posts here.]
18 comments:
Right, I'm in agreement with you that the illness model can deprive us of needed access. I feel happy with myself as is,(mostly!, I'm human), though I'd like less pain. I do think that this has been true in my own case, that those concentrating on me getting better (which hasn't happened in most regards) then don't want to provide accessibility, because they see it as temporary. I'm often told I need to "think positive" or "be optimistic" when I mention a needed change (even a personal decision like using a wheelchair or applying for a service dog).
One complicating factor is that some illnesses may overlap with disability or be protected by ADA, as with cancer. With some of my medical problems, I'm not sure if they're illness or disability but the *primary* issues are disability.
While I am someone who needs rest to be able to do much (pain issues even from sitting up), I'd certainly resent someone other than immediate family (who know my exact limits and can tell from experience when I am about to put myself in severe pain) that I need to rest or recuperate. I do know people who get sick along with their disability (infections with COPD or vent use), but that's an immediate illness and is secondary to the disability.
Often I will say illness and disability, but I mean to indicate those as separate entities, not to blur them together. I hope TABs get that. I'm with you here--if people see us as "sick," they won't want to hire us, for example.
(Thanks for the twitter, by the way!)
WC, this was an excellent way of rounding up your favourite posts, so nicely done. Thank you.
Frida-
Yes you point out some very valid intersections here. I tried to be careful how I worded it, but with the diverse population in the disability community, there is a lot of variation. Would like to hear from others as to how they feel about this too.
Loved your BADD post, btw.
Goldfish- thank YOU for all your work and dedication to BADD.
Yay! I made it into your favorites post!! thanks!!!
Wheelie,
This is awesome! You are Awesome. Thanks!!! This is a subject that is extremely difficult to address with TABs...
Spaz girl- loved your post :)
Full Tilt - yes, it's a very difficult subject to address!
Interesting post and made me think which is a good thing. At least for me. I guess my question is why when people are making all sorts of mistakes and stereotypes regarding potential, employment, housing, barriers and quality of life - would the one thing you want to change is the world that people with DISABILITIES use?
Many, in fact most disabilities, including various types of paralysis are illnesses. For many there is a chronic, unchanging aspect; however I believe that from MD, MS to Lupus to name some big ones, it does, and it does in such a variety of ways (4 BASIC types of MS progressions for example) that itis anything but unchanging. And how can we deal with all the things you mention if we ignore the basic tenet of the disability.....the disease. That potential this year will be different than potential in two years because the person HAS AN ILLNESS. OF course, disease if you prefer, as well all have a form of cellular degeneration and cerebral ones which end in death, we are all ill, as Camus' the plague points out. However, maybe I am missing this but the majority of people I see blogging from CFS/ME to Fibro do NOT have an unchanging condition and wish they had, from Parkinson's to Lymes.
Elizabeth-
Thanks for your perspective on this, coming from your experiences. What occurs to me as I sit here waking up is that quadriplegia has its share of "changing" conditions too - bladder and breathing issues, e.g. And friends of mine with quadriplegia, although not terminal, have died due to lack of care. The root cause of the lack of access to and "stereotypes regarding potential, employment, housing, barriers and quality of life" (as you mention), as well as health care and care itself .
I think we all have much more in common than not, but I won't push that belief onto anyone else. I would hope that we could find a common ground that when people with changing disabilities can get around and about they use the facilities intended to use the world and it's important to them. I wouldn't say, however, that I'm pushing for that to the exclusion of other things you mention.
Although I have a changing condition, I read what you wrote and reacted differently. I identify primarily as disabled, not ill. I'd be very uncomfortable if everyone treated me as if I'm ill.
Another variable in the medical model is that many if not most in the health care business consider disability as inherently negative--a failure of some sort. Few will admit this but disability is an ever present reminder that the field of medicine cannot always cure all physical deficits such as paralysis.
I am sorry if I overreacted, and I do believe I am unclear, I do see all the people I mentioned as 'disabled' I was just reacting, perhaps emotionally but also to the 'many of us, our condition doesn't change' which as you point out, no one disability/disease is by itself, one thing affects another in the body and SCI have issues too, which can lead to amputation, death, long term bed sores or other issues. I do think working together is good. And I do think that those things which make quality of life need to accomodate all of us. I do think in the world there is a need for common ground (but also assumptions, as facilities are often built for just one form of disability - for example, how I am to get BACK to my chair in bathrooms in something I would love to have explained to me, bars to pull me over to toilet - yes, to get back, no. But then, maybe this is covered somewhere I never got to - I did ask the wheelchair PT and they just said, "Welcome to Canada" - but even in the US I find this true).
Bill - yes, that's a really interesting point. Glad you brought that up.
betterolls - thanks for your comment. hope all is well.
Elizabeth - When I wrote this post, I tried not to speak for everyone, but it's a tough topic so I did expect there would be a lively discussion- and will probably be more of one. I respect your point of view always. Bathroom bar placement - we could do a blog of just pictures of the creative but oh so not helpful places they get put.
Yes, we should do that--I need to start taking my camera with me to show some of the ridiculous "accessible" circumstances we run across. When I was younger, I used to sometimes see parallel bars on either side of the toilet in accessible stalls. This is also what some people have done in their homes that I've seen--parallel bars. Now the bars in toilets are placed at 90 degrees, with one beside and one behind the toilet, which is a fair reach for a lot of people, and yes, does introduce the "how do I get back?" problem.
I have one of the so-called by the medical model "unchanging conditions" and le3t me say that the secondary and chronic issues that have developed as the by products of living and aging with this "static" condition pose increasing challenges physically and emotionally(mostly because of others attitudes) and while I do not identify my self as ill but disabled, an important distinction, others, mostly medical professionals, are not so clear about the two and as Bill points out, view disability as a negative when it is a difference that should be properly accommodated. We have a long way to go before "different" stops being viewed as "Bad," "sick," etc.
Full Tilt-
::nodding::
Ruth,
Push it a little further. Completely agree that people oughtn't freak out because they think you're sick. But really, what if you *were* sick? Wouldn't matter. Either you can do the job or you can't. So what?
As a not-sick person, you can make a rough guess as to what you'll be able to do a year or two down the road, maybe more. If you were a sick person, you could also make a rough guess.
--> I think the heart of the trouble isn't that people mistake you for being sick-and-disabled rather than disabled-but-healthy. The trouble is that people really can't deal with either.
[That said, I do appreciate your annoyance with some of the particular comments. People just say dumb things. Wow.]
Jen.
Jen-
Hi Jen,
I'm making a distinction based on wanting a social model rather than a medical model of disability applied. But of course I agree that people shouldn't freak out because they think you're sick.
Thanks for giving me a chance to clarify that, Jen.
Jennifer,
Thank you!
I identify as disabled, but I frequently refer to myself as "sick," as well, because I am. I am disabled by several chronic illnesses that do make me feel sick. I have chronic bacterial and parasitic infections, in fact, as some of my disabilities.
I echo what Elizabeth says.
I knew the social model before I became disabled myself, and totally bought the "disabled people are not sick," proscribed language.
Then I became sick/disabled. I am still sick 14 years later -- sicker, in fact, AND more disabled. I *just* posted a comment on this topic on FWD a few minutes ago -- that it is difficult to deal with the AB world assuming it's all about the illness (medical model), and the PWD world thinking it's all about the access (social model), when for many of us, it is BOTH: I can't get there and participate if you don't provide me with various forms of access (wheelchair access, assistance dog access, sign language/voicing access), BUT usually I can't get there AT ALL because I am sick in bed. That is my disability. I know the DR movement squirms to hear "sick in bed," because it's everyone's worst stereotype of what disability means, and what it does not at all mean for *most* PWDs. But, for a fair chunk of us, it does mean that, AND we still have meaningful, valid lives. We *still* deserve accommodation and respect.
I've had this discussion frequently with a long-time friend and member of the DR movement who also has chronic pain and illness as aspects of her disability: Like most PWDs, we cringe at the word "suffering," because it jumps to that assumption of "otherness" and pity, thereby making us lesser. However, our disabilities do cause us physical (and sometimes emotional) suffering, and that's a reality that we don't think should be so scary. It doesn't make us less able or less worthy. It is good to be able to interact with people who understand that aspect of our disabilities, but it's treacherous territory! I think we all want to be accepted for the fullness of who we are, with understanding, in other words. *Any* knee-jerk reaction to a word to describe oneself, whether it's sick or disabled or whatnot, is, by definition, preventing true respect and understanding. That's what it comes down to, IMO.
Peace.
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