01 May 2009

Don't dis my ability.

Disclaimer that I feel is necessary for the following blog:

I am fully aware of where my injury sits and readily acknowledge that my view is based solely upon my own experience and injury.

***

Disabled.

Interesting word that one. It's one of those words that mean very different things to different people. It's full of associations, images, words, actions, and assumptions.

I think we should start with a look at the word. "Dis" a prefix that denotes the opposite of the suffix "abled".

So what we have here is a word that means not-abled. In the context of the word, its generally used to label someone who is disadvantaged in relation to the "normal" person. For example, someone who has one leg, or no arms, or senses that do not function "correctly". It also covers intellectual disabilities - not being able to think in the same way as "normal" people, not being able to fully integrate with society.

The term is based inherently in the idea that there is a way that we should be - dictated by a majority that appears to fit this mould of "normal".

I feel its a word born from ignorance, from people never labelled "disabled". The perception is one of misunderstanding, one that does not take into account what it is like to be "disabled". It appears to treat "disabilities" as something unfortunate, an illness, accompanied by the unfulfillable desire to be normal.

I think a little background is necessary here to understand the personal experience my opinion is based upon.

I was born under conditions that resulted in a moderate to severe injury to my brachial plexus. In layman's terms - a nerve damage to my right arm. It means that I have limited use of my right arm. It affected my hand and wrist the most resulting in fine motor skills at near zero accompanied by reduced sensation. This is not the worst injury one could harbour, and that's not the point I'm trying to make.

My point is that a disability is, in many ways, an ability.

Life with two functioning arms would fundamentally change who I am. My construction of self has its foundations in my inability to use my arms in the same way everyone else did. As a baby, I never crawled, but developed a kind of scoot, where I propelled myself along the ground on my bum with a combination of hand and leg movements. I developed ways to play just like everyone else - as far as I was concerned everything about me was perfectly normal. I've known no other life. Sure, I couldn't swing on the monkey bars, and took a little longer to climb, but I could swing, paint, and play with play-dough, and talk. As I grew older I found ways to express myself so that my arm did not limit me at all. I use a laptop, I play a euphonium instead of a flute, I have a knob on my steering wheel.

It never concerned me much that I was different. It defined me. I am proud - I like people asking about my arm and I enjoy talking about it, in the same way anyone would like to talk about their defining moments and features. It means that people acknowledge there is something different and unique about me.

I hate people being scared to ask. It implies that they feel I may be sensitive. Which to me, is highlighting that there is something different about me, and that they feel I should be concerned about that difference.

Which brings me back to one of my previous points. That the term "disability" is born from a lack of understanding. It implies that being disabled means that you have an unfulfillable desire to be normal.

Read that bold part closely. There are two distinct groups in that statement. The normal, and the "abnormal". It gives rise to sympathy and pity - disabled.

I do not need sympathy. I do not wish to be normal. What I need is for people to understand my injury, and the limitations that it posses to me, and then to help me modify so that I can accomplish tasks to the best of my physical ability. Curiosity is the first step to understanding what it means to be disabled.

I'm sick of the high and mighty "able-bodied" people thinking are the flag bearers in the noble quest to defend the disabled.

There was an article on the ABC news website today about a fundraiser that had been cancelled. A bunch of primary school students decided to have a "dress up as someone with a disability day". Now yes, there are something things wrong with that. But it had potential. I am all for kids having a "come to school with a pretend physical disability day" and seeing what its like being in a wheel chair, or wearing earmuffs to see what its like being deaf. It leads to greater understanding.

There were a series of comments the article, however, that really made me angry. The main one that nearly made my blood boil was from this lady, calling herself Karen:
I do not blame the children - they pick up on the perceived ideas and attitudes from the adults around them.
At the end of the day my son cannot take off his disability and slip into something a bit more comfortable. Awareness of those with disabilities is not about clothes or appearances. AND IT IS NOT ABOUT POLITICAL CORRECTNESS. It is about treating others with dignity and respect and acknowledging that despite appearances we are all the same.
She was referring to above comments that suggested what I was suggesting - that it would be a great idea for kids to understand disabilities by experiencing them.

It perfectly highlights exactly what I have been saying. She is defending the disabled, and trying to imply that they WANT to be able to "slip into something a little more comfortable". She is perpetuating the implications of a word that misrepresents that which it is trying to represent. Disabled people are NOT, as Karen would like to thing, the same as the "abled".

By trying to treat the disabled as the same you are restricting them in a way that they do not want to be restricted. Sure, they cannot do certain things - but they are able to do many other things - and that's what they want - to do what they can and bugger everyone else.

And that is what they want other people to understand.

All I want is to be able to participate to the best of my ability.











All I want is to be allowed to play on the swings, instead of longingly watching my peers swing on the monkey bars.

11 comments:

Jamie said...

Love it!!!! And agree totally with you!

Jamie said...

Oh and i forgot to say...

I read the article and it states

"years five and six students came up with the idea"

Surely this shows that THE CHILDREN (who i will point out {and yes i know what i am about to say is a BIG cliche} are the future generation... The people who will one day be in charge of running the country, who will have the ability and the power to CHANGE many views on disabilities etc) want to have a better understanding of what it is like to be slightly different from the norm.

Let them have their disability day... It would be a good learning exercise for them, and may make them less likely to have fear when they meet someone with a disability.

Christopher. said...

@ Jamie

Oh, I agree with you, defs.

But granted the people opposed had a few fair points.

Originally it was, apparently, a "dress up as a disabled person" day. I don't think disabled people dress any differently.

It's just such a shame that these children have lost the opportunity to refine their idea, and learn valuable lessons from it. Instead they have been pushed into their parent's PC views.

It's also a real shame that the poor kids in Bangladesh have missed out because of it as well.

That really stings.

Jamie said...

Okay so yes, I agree with that Chris, the school could have thought through the idea a little bit more... I mean, some of the ideas kids come up with sound crazy, but with a little bit of help, are actually very good ideas!

Bechor said...

As always Chris, I love your blog. It's always very thought provoking and insightful.

Just like you, I'll have to add a little disclaimer before I go on. This comment will probably be filled with the crude terminology of which you're complaining, simply because of an absence of more accurate terminology. Secondly, I'm largely playing devil's adocate here because I'm curious about your thoughts.

I think the first thing that should be acknowledged in a discussion about "disabled people" is the huge variety of people which that phrase covers. As disability could be something as (relatively) minor as poor eyesight in one eye, or as major as severe mental retardation that affects motor function, language ability, thinking, etc. Though the term "disabled" places both of these individuals in a class, in practice the two have nothing in common with each other aside from the fact that their bodies don't function like that of an "ordinary person." The reason I think that this is important is that, just as its very difficult to lump "disabled people" into a group, it's also very difficult to have a general discussion about those "disabled people." It is an arbitrary grouping - comparable to picking up several random objects on the street and calling them "street objects" despite the fact that they have nothing in common other than being found on the street. In general, I think the word should not be used, not so much (as you argue) because of its connotations, but because it has very limited usefulness in any serious discussion. Still, for lack of a better term, I'll have to continue using it here.

You say: The term is based inherently in the idea that there is a way that we should be - dictated by a majority that appears to fit this mould of "normal".I'm not sure I agree with this assessment. The term doesn't suggest that there is a way we should be - it suggests that there is a way most people ARE. Most people have two eyes that function in a particular way. A person born with one functional eye, and the other blind, is considered to be abnormal in that sense. Thus, I don't think that the word in itself means that you have "an unfulfillable desire to be normal" - just that you AREN'T normal in some way.

But let's assume that you are right and the word disabled does mean what you argue it means. As you've said you are writing from your own personal experiences. But I can imagine (and I can only imagine, since I have no idea what effects being "disabled" in some way would have on my life)some circumstances in which a disability is so severe that a person suffering from it might indeed wish to be "normal." Take the earlier example of someone suffering from severe mental retardation. If some sort of medical breakthrough would enable that person to gain motor functions, "higher thinking" and enhance severely limited language skills, I do not think it would be far-fetched to say that an ordinary person in that position would accept it - probably even gladly.

So now I've talked myself in a circle and I come back to the problem of talking about "disabled people" in general. I think it's too inaccurate to talk about disabilities at such an abstract level. As you've pointed out, to some people "curing" a disability seems like an outright biggoted and insensitive concept. To others, who might suffer from a disability of an entirely different magnitude, it would probably be a great relief.

This is the problem with words that have no real meaning. :P

Morgan said...

The typos, oh the typos!

Also, good blog. I know that you've said things along these lines to me before, and I completely agree with you.

Good blog, if I wasn't so tired, I would comment properly.

Squirrel245 said...

My pitiful brain agrees with you. It would probably agree with Bechor too, if it was able to read it, but that comment is long enough to be a separate blog post.

Also, "trism".

Mirokoth said...

Im sorry bechor but TLDR.

@ Chris
Sorry I dont post on your blog more often I do actually read it every time you make a new post but by the time I get to the end I just go 'Oh god... to much thinking' and collapse on the floor convulsing.
But thankyou for continuing your writing even though I know you dont really do it for us you just love to write :).
I miss you Mr. Chris and we will have to get together soon!

Christopher. said...

@ Bechor

- I agree with you about the arbitrary nature of the word, and understand exactly where you were coming from. I didn't bring it in because what I was writing was already too long, but it was something that I considered. There is a quote from a guy who has no legs..."Everyone has a disability".

In fact I'm sure many people have expressed that sentiment - but it was the context that he used it that made me quote him.

- Fair point.

- Ah yes, and so you have reached the point that my disclaimer was aimed toward. My experianced as being "disabled" is not something that I consider a very "severe" disability. There are many, many who are worse off than me. Indeed, even amongst people who share my injury there a different degrees.

There are people who are born with the injury - like myself.
Yet there are also people who have suffered the injury later in life.

Using your example there are also groups that have intellectual disabilities. Again, some are born with it, some get them from injuries after living perfectly normal lives.

I think you are right in saying that many would argue that if they could fix themselves they would.

What my gripe is my perceived societal assumption that all "disabilities" are unfortunate, and that all people suffering from them feel that they need to be fixed.

And I mean, even if they are unfortunate injuries, as many are (I feel that way myself more often than my blog post would indicate), there shouldn't be a focus on this. My argument is that there should be a focus on their abilities.

Thanks for the contribution. =)

@ Morgan. Yeah...I barely edit my blogs...I realise it shows, but once I've finished writing all i feel like doing is publishing - such is the wonder of this particular medium.

@ Adam - I would agree with Bechor too =P

@ Rhyse - Thank you. I write just as much for you as myself. Not much point in writing if nobody ever see's it.

Though you could argue that point too =P

I apologise for making you think! =)

Grace said...

Amazing writing Chris. It's an angle that I haven't really thought about and really made me think. Keep it up. :)

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