This week, disability has been everywhere. Dylan Alcott won Australian of the Year. A well deserved winner for many different reasons. Great tennis player, staunch activist, top bloke and a role model for everyone. An inspiration??? Alcott has it all ahead of him, in more ways than most of us will ever appreciate.
Not surprisingly, Alcott lost his last Grand Slam final. In his own words, he was fried. He had flown to Canberra for the awards. He would have had countless people calling him. Endless media interviews. It would surprise no one that his focus was elsewhere. He admitted he should have won the first set. When he lost it, all he could think was that he had to play two more sets. He knew that he might lose, but if he did, he wanted to make sure that he had fun. He had fun and he lost. At the end there wasn’t a dry eye in the house. Including his own..
At the end of his game he received a text from his mate and tennis great Andy Murray. This is what Murray said,
“… I don’t know if I’ve articulated that well but you’re an absolute rock star and inspiration. Thanks for everything that you’ve done. …. Special. Like you’re just a part of it … they don’t even care you’re in a wheelchair.”
Don’t get me wrong, I fully get what Murray was trying to do. But that last part, “.. they don’t even care you are in a wheelchair.”That triggered me, as I am sure it did many other people with a disability. Why should they care that Alcott is in a wheelchair? Well, because he is a champion tennis player. He is the GOAT! I mean fuck, they should care that he is in a wheelchair because he is the greatest and most skilled wheelchair tennis player, of all time. It is who he is! He said it himself. He is a proud, disabled man.
Then I wondered, those people in the stands crying – why were they crying? Were they crying because they would never see him play again? Or were they crying with him, at his sadness that his career was over? Or were they crying because they were inspired that wheelchair man had made good against all odds? Were they they thinking that Alcott was an anomaly; not sad, depressed and suffering like all those other people with a disability? The reality is that it was probably a combination of all of the above.
Disability is a bit of an enigma. Society has a way of wanting it hidden. They do this in lots of subtle ways. For example they make hearing aids as tiny as possible. They struggle to even say the word disability. They use revolting terms like ‘Differently Abled’, ’Sight challenged’, ‘People of Varying Abilities’ and so on. All these terms are designed to normalise disability so that we are all more like the non-disabled. “DON’T EVEN KNOW ITS THERE MATE” is the attitude as many non-disabled try to find ways to deal with their own discomfort. Take it from me, just say the word DISABLED!
Then, there is perception. Alcott tells the world he is a proud, disabled man. That’s great. There are many proud disabled people. Disability is their identity. It is their life style. It is something that they declare loud and proud. Then there are people who are proud to be associated with the disability community, but don’t love their disability so much.
Dr George Taleporos, a disabled man, and in a post on Linkedin that was later published on many media platforms, had this to say:
“ While I recognise that a lot of the discrimination and injustices I face are societal, I hate the fact that I have a genetic condition that causes severe muscle wasting and that over the years it has slowly crippled me, to where the only movement I have remaining is a wriggle in my thumbs.
Does that make me less evolved in my disability journey? Does it mean that I am yet to reach my ultimate destiny of fully embracing and celebrating my disability? Some may presume so.”
Dr Taleporos is an accomplished, disabled man. He is an academic and has been at the forefront of disability activism for many years. He is a role model for people with a disability and non-disabled alike. He defines success. He is proud of his achievements and his standing in the disability community and the community at large, but he hates his disability. In his own words:
“I don’t want sympathy. I want people to understand that we can’t all “love our disability”. For me, there’s really not a lot to love. I hate it and always will.
Hating my disability doesn’t mean that I hate my life. I love my life and I feel proud of what I have achieved and of the work that I do. I feel proud of and love the disability community that I belong to.”
So I wonder, perhaps with too much cynicism, just how do many non-disabled really feel? On the one hand you have Alcott, someone that they can relate to. He has a ready smile. He is handsome and a successful sports person. He is a media personality and loves a beer. They love him because he is everything that they aspire to be, despite his wheelchair. I add that last bit to see if it makes the reader jump. How many people out there actually think that?? Far too many for comfort, I would say.
On the other hand, you have Dr Taleporos. Probably even more successful than Alcott. A person that has created enormous change for disabled people in Australia. A successful academic. A person that has dedicated his life to the Disability community. A person that has helped to identify and break down societal barriers for disabled people. Respected, dedicated and talented, but hates their disability.
And if Dr Taleporos was to walk down the street with Alcott. The Dr and his ability to wriggle his thumbs, Alcott with his looks, charm and beaming smile. What would be the perception of non-disabled people? What would really go on in their heads?
And here lies the challenge for Alcott as Australian of the Year. He has to represent all these shades of grey in the Disability community. He has to articulate all the challenges, all of the perceptions and all of the barriers. His job is to also present success and what that means for the different disabled people. For some, it is sport. For some, it is academic. For some, it is just being happy and being out here. For others, it is a a constant hard grind, where facing everyday is exhausting to a point that many would rather not. Alcott has to represent the needs and experiences of so many diverse disabled people in a realistic light, both positive and negative. I do not envy him.
I will leave you with the words of the brilliant Dr Taleporos,
“So as we spend the next 12 months listening to Dylan and his inspiring, “feel-good” story, don’t forget there are many other stories that might not be quite as heartwarming but that represent the daily reality of disability in its many forms. We can’t all love our disability. We don’t have to.
But what we all need to do is work towards a society where accessibility and inclusion are front and centre of social policy so that there is more to love and less to hate about being disabled.”
To read more of Dr Taleporos views click Here