Wednesday, 15 April 2015

Just Call Me Kay

I have come across folk with disabilities who have scared me witless.

This is not because of their disability, but their attitude to those around them.

When I’m doing disability consultancy I fear being summoned by them. It’s terrifying waiting for them to access what I have put in place because I know I will get a tirade if I have got something wrong - even a small thing. 

So if I, a disabled person, fear these folk - just think what it’s like for someone who knows nothing about disability.

The whole disability world can be very confusing, the terminology varies and changes depending on who you talk to. 

Reactions from those who have a range of disabilities can be vastly different too, depending on their circumstances. And to be honest, some disabled people can be their own worst enemy, growling at people who try to be helpful but get it wrong, and getting very angry when things are not right in every minute detail. These people say they shouldn't have to inform people of their needs all the time, it should be accessible, all the time, end of discussion!

I naughtily call these folk "disability terrorists". You don't really have to do much to incur the wrath of them, and not all of them are disabled. 

Opinions on and reactions to disability terminology/access vary between those born with a disability and those who become disabled.

Preferred terminology will vary depending on how people view their disability.

Reactions vary hugely on certain common phrases as to whether they are viewed as 'Ableist' or not.
For example, I've always been told it's better to put the person first and the disability second. So you would say "A person with a disability". But many prefer it the other way around. They feel that being described as a person with a disability defines them by their medical issue, but instead say they are disabled by society being largely inaccessible, so this makes them a "disabled person”. In other words, it is society that makes them disabled, not their medical condition. (For those ‘in the know’ on these things, we’re talking Medical Model vs Social Model)

Some folk don't like to be called a wheelchair user, some prefer 'differently abled’. Others call themselves ‘wheelies’.

All this political correctness can get very silly! I’ve been ‘barked’ at by other wheelchair users for using the wrong words to describe myself and severely told off by an able bodied person for calling myself a cripple (in jest, on twitter with #CrippleLooseInLondon). 

What I call myself is completely up to me. If I’d called another person a cripple…. well that’s a different story.

For myself, I don’t really mind the order of words.
I prefer ‘person with a disability’ but if I’m tweeting - it uses too many characters, so will revert to ‘disabled person’. I call myself a ‘wheelie’ but have no problem with being called a wheelchair user.
I do dislike being referred to as ‘Wheelchair bound’ because, just like many others I can walk a bit! (And I’m not tied into my chair…)
But if you do call me that - I won’t bite your head of…. or run over your toes.

There are phrases that shouldn’t be used, but we have to bear in mind that people of a certain age will use them. Gentle reminding is good - but we are changing the habits of a life time. Even my mum uses words like handicapped, crippled, retarded, mongol etc! I agree that younger people should know better, but when Americans still use the words handicapped and retarded it’s difficult to educate in this.

My favourite response to the question “What would you like to be called?” is “Kay”

By being grumpy and adversarial in the way we approach correcting these words, we are not helping ourselves, or the people we are trying to teach. 

We all have our pet irritations, our crusades and our preferences when it comes to the subject of disability. But some of us take that to a whole new level!

I live an itinerant life, having to access many different places to do the job I do. I’ve come to the conclusion that to help people help me, I need to give notice of what I need. This helps the people providing the service I want to access, and gives me peace of mind that what I need will be there. 

Having said that, if you are disabled, and your permanent place of work is not accessible, then you have a right for reasonable adjustments to be made. 

Being disabled doesn't make me the centre of the universe - I have to share this world with others.

I could insist on permanent ramps up to all shops so I don’t have to wait for them to be put out. But in places where they are put out permanently, into a public thoroughfare, my friends who are blind have been seriously injured by falling over or off them because there is no warning of the ramps being there and nothing to show where the edge is. 

I have to share this world with people who have other disabilities too.
There are somethings in this world I won’t be able to do - that’s just life. But public places that will be used regularly such as churches and libraries etc should be accessible to at least a reasonable level, and information about it’s accessibility made available on line.

I will still fight for my right to access the world around me, to be treated as a fellow human being and to be allowed to live my life doing the job I love without discrimination.  But I promise I will try to do it with good grace.

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