Wednesday, June 27, 2012

I Am ... or Am I Not

Does disability exist?

Would  a world without disability be diminished?

I've been having some discussions recently, on line and in person, about these issues. I've heard people say things like 'in this situation disability just disappeared' or 'it was like disability just wasn't there.' And they say this in excited tones - like some victory has happened.

Too and also with enthusiasm, I'm told that in a world that is fully accessible, disability will cease to exist.

And in my heart I wonder.

"Why does anyone want a world without disability?"

"Why do people keep telling me that disability disappeared is a goal?"

I don't want the world that they are talking about. I don't want my identity as a man with a disability, I don't want my history as a member of the disability community, I don't want ME and my experiences ... erased, eradicated or eliminated. Why don't they understand that what they say, in excitement, is what scares me? Deep down inside, scares me.

I imagine that if women were all in a woman positive space where all attitudinal barriers to gender were eliminated - they wouldn't want it said that in that situation that 'gender disappeared.' I really don't. The women I know identify strongly with their gender, see their gender as a positive aspect of who they are, couldn't imagine themselves genderless. In fact they would see, I believe, that the idea of ripping their gender from them as an act of violence that supports the idea that their gender is a 'bad thing' that can be 'experienced away.'

I don't see my identity as a disabled person as a bad thing.

I don't wish it away.

I am what I am and what I am is on wheels.

I'm good.

I'm OK.

I'm disabled.

Parent says: You know when it comes to loving, he doesn't have a disability at all.

Child hears: Parents admire me only when they can morph me into an able person.

Media says: It's her talent that defines her, not her disability.

Disabled person hears: I am valued for what I do, but not for who I am.

Staff says: Don't let anyone tell you that you've got a disability.

Disabled person hears: Don't admit to your disability, it's a bad thing.

Messages, messages, messages.

I don't want you to see me 'beyond my disability' I want you to see me AND my disability as one whole.

I don't want you to 'focus on my ability' I want you to focus on the person I am and be informed by my experience as a disabled person.

I don't want to lose my identify as a person with a disability and I don't like it when you talk like the 'elimination' of the disability experience is a GOOD THING.

I believe I have a purpose.

My purpose in informed by my disability.

Don't rob me of me ... and then expect me to thank you for it.

Sometimes those who hate disability most use language of acceptance to further the cause of rejection.

23 comments:

Anonymous said...

Somehow this post conjures up the picture of eggs they "created" to use in meals in space. All fine cooked eggs neatly staked in a onboard refrigarator in "cubes"!

Disability is one kind of human varity. Ending up like clones everyone the same? Not a nice thought.

Living without the bodily and mental pain disability can cause - oh yes that would be great.

Hm, dont know if those thoughts make sense.

Julia

Anonymous said...

If your disibility defines who you are - then you may need to look at your image of yourself. Unless your disabiliy gives you an income, gets you attention, or makes you happy - then who needs it? Good grief - I live for the day disabilities disappear.

Perhaps your disability is just an inconvenience.

I think you assume alot to speak for other disabled people. I'd love for someone to see my love and not my disability. I'd love folks to see a talent and not my disability. I can see not wearing a banner announcing my disability - but I do have to inform others of my limitations.

Do I want a world without disability? You betcha!!

TMc said...

In the words of Kathy Snow, "Disability is Natural... there have always been people with disabilities and there always will be.." Its a natural part of the human spectrum. As a lifelong human services professional, I and others have seen the focus in our work shift from changing the person we support to fit into society (at the expense of their personal identity) to educating the public about the diversity of the human experience.
When people say the disability disappeared I think what they mean is that in that interaction the disability was rendered irrelevant. Because the interaction had context and purpose and was based around a shared interest all the participants focused on what they had in common not on their differences.
As you have advocated Dave, I think it is time for a disablity pride movement.

joanne said...

I wonder....Is disability the same as an illness?
As I watch my daughter struggle with her mental health, it affects her ability to join in social events, and to work....it affects every day. I sure would like a cure. Interesting blog...as always Dave.

Rachel said...

If the world were more accessible certainly the major downsides of disability would go away -- the inability of the world to built to include all. But that's not going to change my body, just how I get around in the world.

I recently moved into what was billed as an accessible apartment. It's certainly way more so than anywhere I've ever lived; being able to reach things like the sink without a stool is a minor miracle.

But being able to maneuver in the kitchen and bathroom more easily doesn't take away my dwarfism, it just makes it less of a factor. It's still there. And I've been through too much with it to seriously wish it away; I admit there are moments, but a lot of such moments could be prevented if people thought about how things are built and how they interact with other people.

Laura said...

I'm not sure I agree dave but it might be semantics too. I do not wish to not have my CP. Because it has shaped my experiences and even negative situations have caused me to grow it ways that make me proud. I do wish however that people and society in general would learn it doesn't need to be a part of every conversation about me or others in similar situations. For example and this is most often when I think about it, if I meeting somebody new I know a certain amount of time is going to be spent on my disability at some point. It gets OLD. :D
Also I've noticed and I'm sure you have too that when something happens and people with disabilities make the news for any reason, their disability is first and formost even if it has no other bearing in said event. "An accident blocked traffic today. A bus carrying "disabled people was in an acciedent..."
SERIOUSLY??? I mean come on, no one would ever start a story like that saying " A bus carrying black students or single woman" Because it's not relavant but somehow disability still has that kind of feeling of importance that it has to be mentioned or something is missing. I long for the day when that is no longer important in every day life. But I don't as a whole wish to stop being me. I just wish that what I see as one part of my whole self wasn't so important to people who don't know me at all. Because some of them judge if the want to know me based on that one fact.

Jim Currie said...

Dave, your post confused me, but in a good sense, that it made me think more about the subject.

I can clearly see how you are proud to identify as a disabled person. However I can still see that for many people for whom their disability has a negative impact on their lives, they would wish that disability to no longer be present.

The reports of people who accomplish "despite their disability" can be construed in different ways. In some cases they are patronising and often intended to be so. But in other cases though they are genuine praise of an accomplishment. It is clear to me that in terms of physical abilities, I have advantages over some people. For me, walking a mile is no problem. For someone with mobility problems it is much harder. For that reason it is more accomplishment for them to have done this than it is for me.

If I was to describe this as being done "despite their disability" it would not be untrue, nor would it be in a patronising sense. I would be in praise of a genuine effort to complete something that for them took considerable effort.

Thanks again for a thought provoking post!

Jim

helencs said...

Hi Dave
Last night we went to see a show performed by kids from a school for kids with intellectual disabilities here in Edinburgh. They do this every year in one of the huge theatres in town. The show was amazing, not "considering these kids have ID" but because it was actually amazing. The kids disability didn't disappear, it just didn't matter in what they were doing. The kids excelled in a way they just wouldn't have had the confidence or opportunity to do if they were in a mainstream school with all that entails. Disability isn't something we should be trying to get rid of; it should something we embrace and celebrate so that kids with disability can do the same.

Anonymous said...

I love being a woman but I could do without sexism- against men as well as against women.
My racial identity and skin tone is totally me and I wouldn't be me any other way but I could do without racism.
I hate it that my partner suffers with health problems and the hitches of negotiating a world not set up to meet her needs. That sometimes focuses human energy on perjoritising the difference she experiences. I thought I hated that she is disabled.
But now I realise I hate the disphobia and I so need to think about, hear about, talk about, experience disability PRIDE!!!!
L

Anonymous said...

It would be nice if disability itself disappeared, and everyone was whole and able.

But these sorts of thing seem to be saying that they don't want to have to *notice* that you are disabled. Which isn't the same thing at all.

Sharon

Utter Randomness said...

Rachel, I disagree. It is true that for some disabilities an accessible world would make a difference for the major downsides, but for others, the world could be completely accessible, even people's attitudes and they would still experience effects that would create disabling challenges.

I agree that accessibility needs to be worked on, for sure, and increased accessibility would help in many cases, but when people say things like "if everything were accessible, there would be no disability" it erases the experience of people for whom that is not the case.

CAM said...

Disabled people are "whole and able".

Glee said...

Check this blog out Dave and All. I went to it immediately after reading yrs Dave. Snap.

http://www.disabilityandrepresentation.com/2012/06/22/ableism-and-ageism-in-one-tidy-little-package/

seeya
Glee

Colleen said...

Dear Dave:

I long for a world where everyone is loved for who they are - the whole package. I wish hate and greed would go away - stuff like that. But I learned from my brother and my daughter that people are whole and perfect for what they need to do in this life - just the way they are. And if they were whole and perfect in that way then so are we all. Problem is we don't seem to get that as a society. I think we all long for that - to be loved for who we are the whole package.

Colleen

liz said...

I would like for barriers, physical ones and invisible one - like people's attitudes towards disability - to disappear, so that people of all levels of mental and physical ability could have access to everything the world has to offer.

But that wouldn't eliminate disability any more than having universally unisex bathrooms would change the way each of us approaches the toilet to pee.

Rachel said...

Utter Randomness, I wasn't trying to say that, I don't think.

It's not a matter of disability being made to disappear by accessibility; it's disability being acknowledged as existing without a value judgement, just as a fact, and realizing that almost any changes, both attitudinal and physical, that make it easier for us make it possible for everybody to contribute to their community in their own way.

Of course some people will need more assistance than others. Given that sort of acceptance of disability then those people will be able to get said assistance without the same judgement or difficulty they have now.

Anonymous said...

Glee, thanks for linking to that blog post! I have now not only read that blog post but also am going to read through the archives of this new blog site!

CapriUni said...

I'm one of those believes in the "Social Model of Disability" -- the idea that the concept of disability is a culturally, semi-made up thing, in much the way that Race is a social construct (the minute, irrelevant, biological differences between people around the globe are nothing compared to the differences people believe are there). This is often (over) simplified to: "Change society to take down barriers, and Disability will disappear!" I don't actually think that's a) true, or b) (as you've pointed out) even desirable. But... Since you've used women and gender for a comparative example:

It's been nearly 30 years since I learned this point of Christian History in college, so my memory is fuzzy, but during one of the first Religious Summits in the third or fourth century C.E., when Christian Elders were debating what the Church's official doctrine should be. There was a serious debate at the time on the question of whether or not women were as fully human as men -- whether or not they had souls of their own. In the end, the vote came down that they did have souls. But the vote was closer than you might expect. Now, if we could somehow show one of those elders a glimpse of what our society looks like today, that elder might conclude (based on his understanding of "gender") that we have, indeed, "gotten rid of womanhood," whereas we, who are living through it, believe that we have developed a deeper, more complex, and subtle understanding of what womanhood is.

I have a similar hope for Society's concept of "disability" -- I just hope it comes along sooner than 1,700 years!

Anonymous said...

CAM said...
Disabled people are "whole and able".

Cam, perhaps you are whole and able, I hope so. But I'm not. I am so limited in what I can do compared to years ago, that if I thought about it too hard, I'd cry. But I keep going and do what I can, and enjoy life.

There are many ways that accessibility can help me.. but no amount of accessibility is going to help when I hurt too much to get out of bed. When doing a modest amount of "normal" activity makes me pay for days.

No, I am not "whole and able". That's my personal view anyway.

Sharon

Barb said...

I would muse that using the word to define a group of people is where the trouble lies. All people are human and should be respected as such regardless of they way they look, or what they are able to do physically or mentally. Society has labelled people and treated them differently due to the label. I agree with Dave, he should be proud of who he is and every tiny piece of what makes him the amazing man he is. Some are born with a "disability" and don't know any different until we treat them different. It is PART of what defines them just as mental illness is aprt of what defines who I am! And by the way I am PROUD of who I am and that my mental illness has contributed to the person I am today!

CAM said...

Sharon, I did not mean to say life is without pain and difficulty. But I do not think anyone, regardless of their disability is less than, not a whole person, not good enough. Each of us is a whole person. Each of us are able to do what we are able to do.

I am sorry you are experiencing so much pain, but I still think you are a whole person.

Amanda said...

There's something making me uncomfortable. It's anyone's right to say they're not whole and able. But a couple comments seemed to veer dangerously close to saying "You may see yourself as whole and able, but there are people with more serious conditions who can't." 

And... the world really isn't that simple. I've met people with barely as much as a limp who feel themselves not to be whole or able. And other people who need help with everything, who see themselves as whole and able. Seeing yourself as whole and able has less to do with what conditions you have, and more to do with ho you view the world. 

I'm going to list a bunch of different things about myself. I don't want anyone to feel bad for me or something. I just feel like I need people to understand where I'm coming from, in terms of conditions, when I say I am whole and able:

I live the vast majority of my life in bed.  When not in bed, I can sometimes walk short distances, but otherwise use either a motorized wheelchair, or a manual transport chair. Both of which have to be able to tilt back. And even being pushed around in the manual one while completely tilted back wears me out. I'm not able to speak, and sometimes not able to type.  

I only get bathed in bed, and rarely all of me at once because it's painful and tiring to get washed.  Most other daily tasks either require someone to start me out (like if they hand me food I can eat, not likely to be able to if I have to go get the food), or far more involved help. And there's nothing, even "simple" things, that I can do all the time. 

I have to plan my entire life around cues.  Like, I need something, usually something physical, that prompts me to start doing something.  Otherwise I either can't do it, or do it very badly. 

I have more forms of chronic pain than I can remember all at once.  Migraine, neuropathic (possibly central) pain, trigeminal neuralgia, joint pain from hypermobility, several unknown sources of back and neck pain, chronic daily headache, spasticity.  And I know there have to be more, but I've only got one body, so it's hard to remember them all separated out like that.  (That problem exists for other diagnoses too.  Medical professionals are pretty sure I have to have something that links a lot of this crap together, but they don't know what.)

(continued)

Amanda said...

I also have asthma, bronchiectasis (hence recurring lung infections), reflux that affects breathing, severe constipation (as in it regularly tries to kill me), some kind of problem that recurs despite my gallbladder removed, heart rate that has spontaneously hit 250 at times, temporal lobe epilepsy, central and obstructive sleep apmea, a circadian rhythm disorder, a movement disorder (so far has been progressive), some kind of condition that causes muscle weakness, and again assorted other stuff I rarely think of all separated out.  Also need an implant to be able to urinate, because of spasticity.  And have had severe depression and PTSD. 

I have a lot of weird cognitive stuff. As in, stuff that most people would never think of as existing, because it's not how most people's minds work.  I have trouble in a wide range of areas.  But they are constantly shifting around. So while there really are times all abilities are on the same level, mostly it's shifted around so I can do a couple things but not others. Like playing hot potato. 

So several areas I can have trouble in include:  Reading comprehension, speech comprehension, language comprehension, writing, speaking, expressive language, understanding my surroundings, separating and identifying objects by sight, connecting together things I see, multitasking, counting, having a sense of time, thinking in ideas or symbols (of any kind, words or not), locating and understanding signals from my body, object permanence, recognizing things outside me (through any or all senses), using my senses, all kinds of things like that.  

Each of those abilities has kind of a normal range it's in.  And then it has ranges outside its normal range in each direction. So like let's say abilities in an oversimplified world go from 0 to 20. So something may normally bounce around in the 3 to 8 range. But with the right circumstances and lots of effort it can be pushed as high as 12. And if I'm shutting down a lot it can hit 0. 

So then each ability has those various ranges. And within those ranges, at any given time, they're constantly moving around. And to get more out of one ability, the rest have to be dropped lower. And when I'm resting they're lower. And if I've done too much a lot of them will start hovering around zero, even in some areas I'm normally quite good at.  If this happens to enough things at once, I can enter a state where I must be aware of something, but I'm not sure what it is. I just know I have to have been aware of something for my memory to record that time.

It always surprises me when I list all this stuff at once.  Because it just feels like my body, not an assorted collection if medical diagnoses.  But I feel like I had to list it all.  Because its never what people expect when they see me online saying I am whole and able. 

Why do I see myself as whole?

Because being whole isn't about how your body or mind work. It's about something deeper than that.  Much deeper.

Why do I see myself as able?

Because there are things I am able to do.  If you are able to see yourself as anything at all, you are able to do something. Being able doesn't mean having the exact set of abilities considered the norm in your society. (Some disabled people even have abilities most people lack, me included. Not that this should be the measure of who is able either. It's just worth mentioning.)