Marmiteboy - Urbane Warrior.

Thursday, September 29, 2005

What if you're were not a crip?

Having been disabled for over 26 of my 40 years I have been wondering lately what it would be like to be non-disabled. As someone who trains disabled people in positive action and disability awareness it's an important question for me to answer.

I'm forever championing the positive aspects of being disabled. I couldn't go into the classroom on a positive action course bemoaning my terrible luck over the last twenty years and how countless operations hadn't worked and how shite it was being a crip. It wouldn't generate the right atmosphere for a start.But what do really think? But I'm being professionally hypocritical?

Well if you'd asked me 10 years ago I would have given you a very different answer to what I will give you today. I hadn't accepted what I was at that time and was still going through the grieving process. I think many of us who acquire a disablity grieve for the things we can no longer do. It would take a a very pragmatic person indeed to be accepting of an acquired disablility.There are exceptions of course. Alessandro Zinardi the racing driver who lost both legs in a horrific crash was planning his come back within weeks of his accident.

My answer today would be if you could take away the pain I wouldn't change a thing. My stick is an extension of my personality. It's part of who I am. Being a disabled person has given me so many opportunities that I wouldn't have had if I wasn't a crip. The training that I do, which is probably the most fulfilling thing I do, would never have happened if I hadn't had my accident. I have met so many fabulous people that wouildn't have come into my life. I'm a better person for being disabled. To me being disabled is something to celebrate and Rod Liddle can stick it where the sun don't shine.

There is another issue here though. Much of the subject matter I cover when training disbaled people who have acquired a disability is about loss. Many disabled people, when they acquire their disability lose a great deal, be it sporting ability, sight, hearing, mobility etc. I could go on for ages, but I have been wondering what it would be like to be a disabled person with a congenital condition who were suddenly 'cured'. Now I have only one person to go on here,my great friend and mentor Alan Counsell who is CP. He has told me that he would hate it if he wasn't disabled because he has never known anything else. It's a very important point. How scary would it be for a person born blind to gain sight after 30 years or so. They would have to adjust their whole world as much as someone who lost their sight at 30. Likewise a person who has used a wheelchair all their life would find it hard to adjust if they could suddenly walk unaided. Their life would change completely.

This is only a theory, and maybe completely wrong about this but loss can work both ways in my opinion. I have accepted myself completely as a disabled person (sure get bad days when I'm pissed off cos I'm hurting like a bastard). I have been disabled for more than half my life and it would take a lot of adjusting to get used to being non-disabled. It's something I'd rather not go through.


Blogger Lady Bracknell said...

Lady Bracknell is a proponent of the social model of disability and, as such, has not "acquired a disability": rather, she has acquired an impairment.

She is disappointed that Master Marmite should have made such a linguistic error, particularly considering how he has just spent his day....

8:20 pm

Blogger marmiteboy said...

Call it extreme tiredness if you want.It's been a long day.

8:29 pm

Blogger Lady Bracknell said...

It is fortunate that Master Marmite's students, whom he has been inculcating with social model precepts, are unlikely to be reading his blog.

8:36 pm

Blogger Charlesdawson said...

I seem to remember seeing a programme some time ago about a chap who had been blind from birth, or early infancy, who thanks to a new technique had his vision restored. I think he was American.

And he wasn't exactly delirious about it; in fact he had severe psychological problems. His whole sensory apparatus had been rejigged at a stroke and he had to remake his perception of reality.

This is the point: dis-abled means an ability has been taken away. Someone who never had that ability in the first place is not dis-abled, they are "normal" (can't think of a good word to express what I mean).

I can't remember the outcome of this blind chap's experience; can anyone?

8:41 pm

Blogger marmiteboy said...

Lady B,

We can't all be perfect all the time.

8:52 pm

Anonymous Timmargh said...

I was born with FSH muscular dystrophy and so have been slowly getting weaker and as such been losing the ability to do certain things.

Being suddenly cured would definitely be an acutely difficult thing to adjust to (although in reality it would take a considerable amount of time to build my body up to be anything like "normal").

I also think I'd be plagued with the immense fear of being struck down with something that would take it back away from me, be it a crippling accident or disease of some kind. I'd probably end up being completely paranoid and would be overly careful about anything remotely dangerous.

But, that doesn't mean I'd like the chance to see wha it's like ... ;^)

8:56 pm

Blogger marmiteboy said...


That of course is a very good point. I bet not many non-disabled people would want to see what it was like to be disabled.

Someone born with an impairment on the other hand would have a totally different view.

Thanks for your comments.


9:16 pm

Blogger Lady Bracknell said...

Lady Bracknell has never claimed to be perfect: merely to be firm of purpose.

Master Marmite has been known to swoop like a hawk when Lady Bracknell has fallen into a similar error:she is merely returning the compliment.

11:11 pm

Blogger Gimpy Mumpy said...

I found what Tim had to say really sparked a bit of a reality check for me. My cripness is the result of a sudden, unnexpected, but possibly preventable fall down a flight of stairs (at home). Now to be medically exact I did discover that I had an until then unknown congenital defect of the spine that aloud for such extreme damage........but to make a long story short, I now am terribly afraid of falling. But if I were to suddenly wake up 'normal' I think I would be even more scared that it would happen again.

Also would like to add that I really (once I was done bemoaning my position) felt empowered by this whole experience. Suddenly it wasn't the way I walked, or dressed, or how successful my job that was important so I finally felt confident being me. I would truly hate to lose that, although I don't think anyone could take that away once it is found.

Lots to think about, thanks MB!

11:45 pm

Anonymous Anonymous said...

I am still alive thank goodness, in spite of my mental illness (manic depression) and its attempts to rid me from this planet.

Would I change anything? Yes, I would have the major downers cut out. But please leave me my highs (and Crushed Velvet suit)!

Great article(?) Marmite!

Stringfellows Bottom (well that goes up and down a lot)

1:08 pm

Blogger Becca said...

I'm in the relatively unusual (and definately not recommended) position of having two impairments; my autistic spectrum disorder and associated neuroprocessing impairments have been with me since birth or thereabouts, whereas my maybe-progressive-or-just-changing-a-bit mobility impairment - which seems to involve some congenital aspects combined with various other orthopaedic, muscular and rheumatological horrors - has, although also present from at least early childhood, only really affected my mobility since I was 12, and does so now very much more than then.

Even during a period in my early teens of being ambulant enough to run after a fashion (a kind of wobbling skip) and walk fairly long distances, I feel that I'm much MUCH more mobile and independant now as a 20 year old mostly-wheelchair user. Needless to say, my mother disagrees.

1:32 pm

Anonymous Anonymous said...

I remember saying seomthing like this on ouch before now.

My answer is that, I wouldnt' want to be cured/relieved of my disability during this life time. REason being, as mines congenital, I wouldn't be able to cope with the change. On a psychological level it would severely mess me up. There'd be no support systems in place for me to adjust. It would take years for me to do so! Before I started properly living the life of being non-disabled. So, what's the point? What i have is all I know, all I ever can know.

Ok, I'd give up the albinism and have proper amounts of pigment producing inside of me. That I would gladly love to see the back of. Sorry, but, I detest the white hair, sure, could keep the overly pale skin, the translucent effects on the eyes is unflattering but, I can live with it *groan*. Not the hair colour though.

As I said, i couldn't give up the level of vision loss for full sight for anything. It wouldn't work if I was cured.

What has being disabled/impaired taught me. Not a lot on the face of it. Life's experiences haven't been impressive for me. However, I do feel I'm learning much deeper, more valuable lessons. Lessons concerning concepts of lookism, shallowness, the faulseness of others. I'm able to focus more on human nature and all t that is. I couldn't do that if I was non-disabled. I'd look the way society wanted and, I'd be reasonably popular, cocky, crude and shallow for it.

4:48 pm

Blogger The Goldfish said...

This was a really good blog entry and I wanted to comment on it during the week but my brain wouldn't engage to do so.

Recently I met a woman who had had my condition - or at least had been told she had - for thirteen years. Then it turns out it was a chronic Lyme Disease infection, course of anti-biotics, six months building her strength back and bingo! Well woman.

She hadn't been as "bad" as I am and I think the six months of gradual recovery provided a buffer-zone of sorts. But she certainly described how she had learnt from it, how she would look after herself better and remember what is most valuable in life.

And I must say, I immediately began ploughing through information about Lyme Disease, hoping that there was a gnat's chance in hell that I too may have been misdiagnosed... no such luck.

Because the truth is that if someone offered me a magic pill, I would gulp it down in an instant. However, if someone offered to turn back the clock and have me be well all my life, no way. And if the magic pill had side effects, or if the devil turned up and said your health for your soul, nope. I would like it back, but there are far more important things in life.

10:08 pm

Blogger Katja said...

I've an acquired impairment (as Her Ladyship would have me say). Perfectly fine for 34 years, and have spent the last 11 going downhill in a very higgledy jiggledy way.

It's hard for me to wrap my head around the "I wouldn't want to have better physical functioning" mindset.

Like every other 40-something on the planet, I'm noticing that my vision is changing (and not for the better). If there were a pill for that, I'd take it.

If there were an anti-MS pill, and I could go back to being able to work full time, be a Domestic Goddess, and be Wonder-Mom to my kids, all at the same time and on 7 hours of sleep a night, I'd take it.

But there isn't. So I might as well spend as much of my time and energy as possible making the world a better place for me (and others like and not like me) to live and function.

7:16 pm


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