What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Monday, 8 October 2007

Para versus Special

Here is something I have been thinking about.
One of the CPecialparents recently passed round this request from the CEO of the Special Olympics, as it appeared in their August 2007 Journal:

"This year, the Prime Minister will call a federal election. Whatever your political views I ask you to consider the future for young Special Olympics athletes and bring it to the attention of your local representatives.

Australia is a great sporting nation recognised for the Wallabies, Socceroos, Opals, Hockeyroos, and many Olympians and Paralympians who make us proud. But when the disability world (and the 170 Special Olympics programs around the globe) look at Australia, they see a heartlessness and meanness in government support for people with an intellectual disability to be involved in sport. They see major inequality in funding among the disability groups and a lack of consultation, understanding and direction.

Despite a lot of recent activity there has been NO NEW FUNDING from the National Review of Disability Sport. While we are grateful for the $0.1 million annual funding from the government this is just 5% of our income and compares to an annual $5.5 million which the Paralympics receive.

Given the benefits Special Olympics brings to sport, health, education, social inclusion and volunteering we believe government should support our work so that we can reach out to more of the 174,000 Australians with an intellectual disability.

(…) please raise this with your federal member during the coming election."

This request got me thinking. Why is it that the Paralympics get more funding than the Special Olympics? The only answer can be discrimination.

It is one thing to realise that people with an intellectual disability are more discriminated against than people with a physical disability. It is another to realise I have been guilty of this myself.

When our first child was diagnosed with CP we went through a rough time, as all parents do in this situation. I am not proud to admit it, but there was a sense of relief that his disability was physical – it seemed somehow easier to deal with. I remember one conversation with a physiotherapist, in which I told her I really wasn't too fussed about him needing a wheelchair – if only he would be able to talk. I also remember my deep disappointment when an IQ test failed to deliver the "he's definitely OK intellectually" result.

As a society, we place great importance on education. I hold three university degrees obtained in three different languages and was working on a PhD before motherhood totally derailed me. So I know what I'm talking about here. My Hubby is a bit of a thinker too. Brains are important for us. Stupidity or slowness was not something I tolerated very well. And then my firstborn came along to teach me a lesson or two about life, and I came to realise that how you live your life is what matters. How you love, and are loved. How you interact with others. How you value the simple fact of being alive, being there with and for others.

I have come to know children with an intellectual disability as the children they are. We have shared therapy and leisure time at the Special Needs Swimming Club and Riding for the Disabled, and I have learned that they are kids like any other, live normal lives in normal families, and there is nothing to pity (although the families could do with a bit more help). The kids just simply are.

Yet I admit there is still some prejudice I struggle with. The word "stupid" is banned in our house as one of the naughty words. It's partly because of my heightened awareness of the discrimination in the word, but I have asked myself if it is some sort of guilt reaction for still valuing intelligence over love. I still tell people that our son has a physical disability that comes with developmental delays and some learning difficulties, but he's intellectually "normal". I tell myself that I do this because I don't want people to treat him as if he's stupid – and really I don't – but is there not also some prejudice in me there? He's perfectly capable of showing people who he is, and doesn't really need me to pre-empt things. I tell myself that I want to "educate" people that being "a spastic" refers to a muscle condition and not intelligence. I am at pains to tell people about my son's friends with CP who are smart and have above average intelligence. But am I doing my bit for the "image" of CP here, or am I doing a disservice to people with an intellectual disability? What do you think?

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