Monday, March 05, 2007

The Tragedy Model of Disability

The next Disability Carnival (rescheduled for March 10th) is about HIV/AIDS and disability. I haven't seen many blogs written on this subject and wanted to contribute something, but this was kind of hashed together on a day of fog.

The Tragedy Model of Disability (sometimes Charity Model) is a fascinating demonstration of our need to impose order on the world through story-telling. Not only does this understanding of disability carries all that Medical Model baggage about there being something wrong with us which ought to be put right, but it imposes a very orderly yet highly emotional narrative on our lives and limitations.

Anyone who has ever read newspapers or watched the television will be very familiar with this particular story. It goes a little like this:

Beginning - The Tragedy
In which an innocent is struck by disaster.

Laura was an active young girl before she was struck by a crippling disease, which left her housebound and unable to go to college. Before long, none of her friends visited anymore and she found herself sitting at the window, watching as the best years of her life passed her by.

All prospective parents want is a normal healthy baby. Betty’s pregnancy seemed to be going well before a routine scan in the third semester revealed a problem that would turn her family life upside down. She was told that her child would be born a vegetable – possibly an avocado, although the prognosis remained uncertain.

Jack was a normal young man before a freak motorcycle crash left him paralysed and confined to a wheelchair. When the doctors told him he could never walk again, he realised the life he had enjoyed was over and contemplated suicide.

Middle - The Brave Struggle
In which our hero bravely struggles against the adversity they are faced with.

Laura tried all number of conventional and alternative therapies in an attempt to get well, but nothing seemed to work. She established a charity to raise money so that she could consult a very expensive magician who she considered her last hope in her struggle for normality.

When Jemima was born she had multiple disabilities, but Betty was determined her life would be as normal as possible. Jemima underwent many experimental surgeries and therapies in her early life and managed to attend a Special School for Very Special Children, where she learnt to read and write despite having very little control over the muscles of her legs.

Being a brave young man, Jack was not down in the dumps for long. He soon became determined to defy the doctor’s pessimism. “I will walk again!” he said. “Even if it kills me!”

End - The Bittersweet Resolution
In which our hero finally overcomes adversity or at least finds some compromise in which they might live happily ever after despite their afflictions. Occasionally, they lose the battle and die.

Laura eventually raised the hundred thousand pounds she needed to see the magician. Now, through the power of magic, Laura is slowly getting her life back. She remains housebound and sleeps most of the day, but says she now feels almost completely normal.

Despite her challenges, Jemima completely her education, went to university and is now working as a lawyer. Betty hopes that better prenatal screening techniques will mean that in the future, tragic children like Jemima need never be born.

This year, Jack met and married Miranda, a special someone who could see past his disability with the help of a periscope. They are planning a family together. Jack remains resolute that one day, he shall be playing football with his children, just like all the normal Dads.

This is terribly destructive for very many reasons. Chiefly, because it not only casts each of us in a particular role, it also obliges us to play that role and punishes those of us who deviate. The main way in which the vast majority of disabled people deviate is by disrupting the story midway, coming to terms with our situations and then getting pissed off at the way in which we are disabled by so much more than our functional limitations. We stop suffering. We tend to become "chippy", we lose all that wonderfully endearing humility and gratitude. We are the wide-eyed, fluffy and vulnerable kitten that grew up and grew claws.

And people find it genuinely disappointing. Not suffering? Not brave? Well, how do I place you? How can I make myself feel good if I can do nothing to help you? How can I compare my life favourably to yours if you are perfectly happy? Who shall I have as a role model if you are not engaged in a struggle against adversity?

The other way in which many disabled people deviate is by disrupting the very first part of the story. After all, a hero has to fit the role. A hero must be innocent, righteous and everything else that heroes should be. The disaster must be as simple and straight-forward as possible. Impairment is rarely simple and straight-forward and disabled people are no more representative of goodness than any other group of society.

For example, young men who acquire injuries in war offer wonderfully tragic stories. Not only are they usually young, male and often beautiful (you get extra points for all three), but they were engaged in a heroic activity when tradegy struck. He took this bullet for his country.

This works very well, so long as their injuries are physical. The remaining stigma of mental health as some sort of moral weakness is even greater when those experiencing it are supposed to be some of the toughest men around. He watched his comrades die horribly for his country and is yet to recover from the trauma doesn't work so well, apparently.

But then there are diseases like HIV/AIDS. I have written before about responsibility and health, also about contagious diseases as an inevitable consequence of human contact.

Many people who have acquired impairments have done so through activity with an established level of risk. Pretty much any sporting activity, using the roads, DIY projects, certain jobs which involve high places, heavy objects, water, volatile substances, biological hazards; people get hurt doing these things. Most people don't and most people who do get hurt are not badly hurt; broken arms and legs rather than broken spines and head injuries.

An awful lot of people take risks doing the things that they enjoy. Some people are very conscientious in keeping that risk to an absolute minimum, but others are not. You only have to make a small mistake, once, and be unlucky. Which is the usual way in which HIV/AIDS is contracted in the UK. There is no moral difference between this and a snowboarding accident; a risk was taken and this time, events took a turn for the worse.

Trouble is we have another little myth which we find psychologically useful, which means that HIV/AIDS cannot fit into the Tragedy Model of Disability. This goes something like
I am afraid of the bad thing. The bad thing happened to him because he is a bad person. I am not such a bad person, therefore the bad thing cannot happen to me. I am safe.
Our culture carries a lot of baggage around sex, sexual desire and sexual behaviour. I imagine there is something deep down in every one of us which secretly feels we shouldn’t really have sex at all, or if we should it should only be under very particular socially-sanctioned conditions. However, most people behave quite differently. A lot of people take risks with sex; we know this, as despite HIV/AIDS remaining relatively rare, other STIs are not, nor is unwanted pregnancy (by far the most serious moral consequence).

And people ought to use condoms and ought to be more conscious about the risks they are taking - especially where there is the potential to get pregnant. However, after the fact of an HIV infection, how somebody came to have such an impairment is totally and utterly irrelevant.

What’s more, with HIV/AIDS, perhaps more than any other condition, disability often begins long before a person experiences functional impairment. The mere status, regardless of whether it poses any actual limitations, is enough to bring one up against disabling prejudice. Prejudice from both those who consider a person to have brought their condition on themselves, as well as those who may not, but consider HIV/AIDS so very tragic that someone with the disease might as well be on their deathbed from day one.


fluttertongue said...

This is a wonderful post - you are a gifted writer!

Sage said...

I loved the stories at the beginning. You could flush them out and compile a series.

On non-heroes becoming disabled - if they're not noble before hand, then they must deserve it, and we shouldn't care about them too much. Somehow it's only necessary to care about the pious - maybe we learn from moral example, and since God let the rest drown, we should too. So if Joe the garbage collector, who spent his nights watching the game on TV with a few beers, ends up losing use of his legs, it's not a great loss because his life isn't as worthy as some special wonderous person who, perhaps, played sports, and therefore, really gave back something to society.

Funny that.

Anonymous said...

Just two comments...? On this most incisive, erudite and important of posts??

Honestly, I never cease to be amazed. Posts about the minutiae of everyday life ("I got a hang-nail today" or "The fish are doing well") have people queuing around the block to leave comments, but when you talk about the really important stuff; the stuff that matters; things that make you go “Hmmmm!”; the same commentators stay away in droves.

“C’est la vie” say the old folks, it goes to show you never can tell!!

Anyway this “old folk” is mightily impressed and wanted you to know!!

Big Respect to ya,

Dude x

Mary said...

Dude, I would love to comment on this post if there was anything I wanted to add to it, or wasn't clear on.

But as it is, I'm just sitting here thinking "dammit! why can I never come up with stuff like this?!"

Anonymous said...

Dude, any comment on this incisive post would be superfluous; Goldfish has a knack of getting to the heart of the matter in one go.

What can one say apart from "I wish I'd said that!"

The Goldfish said...

Thank you. :-)

In fairness, I did bump it down within twelve hours, as it was written in a bit of a hurr and in fog. Glad it made sense to someone. :-)

imfunnytoo said...

I love this post. We should never be up for either Sinner of the Year, or Sainthood, because of our impairments and/or how the impairments got's an illustration of basic humanity, and that's all...

Anonymous said...

Mary - There was nothing I could add or on which I lacked clarity either, but feedback doesn't need to be critical or negative.

Charles - "Thank you" is never superfluous. If "I wish I'd said that" is all you can say, then say it!

If authors of this calibre (and there are only a couple) publish material of this quality, only to be met with silence, chances are that they will be less inclined to do so again. After all, why bother if nobody is interested? I'm not suggesting that sycophancy is called for, but if gems like this are not appreciated they will disappear and all we will be left with will be the kind of self-indulgent egocentric nonsense which pollutes most of the blogosphere.


Tokah said...

Brilliant post!

Maggie said...

LOL, loved your heroic disabled stories. ;-) A friend of ours has a name for such tales - he calls them "dead nun stories". Of course it's always better if it's a dead beautiful nun too. ;-)

Anonymous said...

your bowl must be well placed as you sure get an interesting view of the world. I too get an interesting view as I'm a wheelchair user - I'm a good judge of bums as well!

kitrona said...

This is a wonderful post. Thank you for saying some of the things I wish I could get out through my fog. :)