A Slip of the Tongue

simProfessor Alan Mackay-Sim is the Australian of the year for 2017. Mr Mackay-Sim is a distinguished scientist. He is a trail-blazer in stem cell therapy research. Mr Mackay-Sim’s work has far reaching consequences. It impacts on the treatment of people with cancer, spinal injuries and even conditions of the brain such as Parkinson’s and schizophrenia. Make no mistake, Mackay-Sim is a brilliant man and his work will impact positively on the well-being of many people in the years ahead.

Imagine using stem cells to be rid of the debilitating tremors of Parkinsons. Imagine having a severe spinal injury and being fixed so that you can do all the things that you once used to do. Maybe not all of them but at least be independent and mobile. Imagine the deaf having their nerve cells restored so that they can hear again. Perhaps livers and hearts can be repaired rather than having to rely on transplants and years of drugs to prevent rejection of the new organ. It is no small thing that Mr Mackay-Sim has done.

In his acceptance speech for Australian of the Year he excitedly proclaimed;

“We must, as Australians, prioritise our spending so that we can afford not only to look after the disabled and the diseased in our community, but to look at future radical treatments that will reduce future health costs,”

He further went on to say;

“More than 10,000 people in Australia have a spinal injury and we add to that tally by a person every day and the cost to Australia is about $2 billion annually.”

And with that he upset many in the disability community.

For a while I stopped writing. I needed to think over the message I wanted to convey. In years gone by I would have had the tendency to get stuck into Mr  Mackay-Sim for the gross disrespect that he had just shown to people with a disability. But I decided to enact the 24 hour rule and think it through. (Such is the wisdom that comes with the mellowing of age.)

At home that evening I sat down to continue my binge watching of HOUSE on Netflix. For those that don’t know, HOUSE is the medi-drama/comedy that stars the very talented Hugh Laurie. HOUSE is a brilliant diagnostician doctor. He can diagnose anything eventually. He is also a seemingly dry and emotionless man. (But we all know it is really just a façade and he is kind, gentle and caring soul.) With a stare into the distance and twitch of the nostrils we know he has got it. Like Holmes said do Watson, it was seemingly elementary.

In this particular episode HOUSE is treating a woman that was previously blind. She had a cornea implant and after years of not being able to see she suddenly could see. But she was not happy. What she saw was ugly. It made no sense to her. It did not make her happy. It engulfed her with sadness and horror. Said HOUSE, “Even seeing cannot change your misery”

And the disability activist in me loved HOUSE. I loved him because he was suggesting that the world of abelism is not what we all think it is. I loved him because he was telling the world that there is more to life than just what able bodied people think is utopia, There is a blind life, a deaf life and a disabled life that is no different to any life. Its all about values and experience. There is no one way to happiness. This I believe.

And then he spoiled it. He chopped off her skull. He did this and that with her brain. He covered her eyes in bandages. After mutilating this woman in this way he stood before her hospital bed. “HOUSE”, she said, “I can smell you.” Yes, this previously blind woman had not lost any of her blind talents. “Back to blindness, back to ordinariness.”  Said HOUSE, ” … I will take the bandages of your eyes and what you will see will be far better than what you ever saw before.” (The dialogue is my paraphrasing of what was said, it is not the actual dialogue)

You see there had been some kind of brain injury. This brain injury had impaired the woman’s ability to perceive images as “normal” people do. The miracle of brain surgery would restore her sight as it should be. And so HOUSE removed the bandages. The woman looked around and at the face of HOUSE. “How do I look?”  asked HOUSE?  And the woman smiled. The illusion of the perfect world of blindness was shattered. Seeing was everything.

BUT WAIT!!! Just in my last Rebuttal I professed to being scared witless at the thought of loosing my sight. As a deaf person I need and want my sight. All I had was cataracts and I was literally a nervous wreck. Seeing to me is everything. It lets me continue to do all the things that I love. What am I? The worlds biggest hypocrite? Given the choice I would never, ever want to be blind.

But that is because I have learnt sight. In fact if you are born blind and suddenly find yourself seeing you apparently have to learn sight.  There was some very interesting research done about people who are given sight after being blind since birth. It is apparent that the restoration of sight is no fairy tale. “… first moments for the newly sighted are blurry, incoherent, and saturated by brightness—like walking into daylight with dilated pupils—and swirls of colors that do not make sense as shapes or faces or any kind of object. The moments immediately following bandage removal are not quite as ‘magical’ as Hollywood movies would have us believe,” Apparently nothing the newly sighted person sees makes any sense because sight is not innate and must be learned. There are even documented cases where sight has been given to a born blind person and it has been so traumatic that they wished that they were blind again.  Read full article here.

While I do not want to be blind that does not mean that the life of a  line person is crap. There are clearly many happy blind people who are very satisfied with their lives. This goes for deaf, wheelchair users and other people with a disability. What Mackay-Sim has done, probably unwittingly, has devalued the life of people with a disability. He has assumed that being able bodied is the thing to be and with his statement he has labeled every single person with a disability as lesser, and worse, a burden to society. This is sad because with a slip of the tongue he has undermined all of the great work he has done, at least in the eyes of many people with a disability.

That said disability is not always a great thing. It can be painful, stressful and sheer hard work. There is no doubt that many people with a disability, given a choice, would jump at the choice of having their condition eliminated so they can be free of pain and fully independent. All well and good but this does not justify labelling people with a disability as lesser and a burden and Mr Mackay-Sim needs to be mindful of that. For the record, people with a disability are a thriving economy providing employment for thousands of people around the world estimated to be in the trillions of dollars. Be it care, technology, professionals or equipment there are many people that owe their livelihoods to people with a disability. Mackay-Sim being one of them.

 

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2 thoughts on “A Slip of the Tongue

  1. I am disabled and I did not interpret what this brilliant man said as in any way offensive. He had been made Aussie of the year because of his healing so why is it offensive to say more funding is needed to continue and improve what he does best.
    Anyone who has worked in a laboratory knows funding is low and hard to get.
    Thank you Professor Alan … Now some stem cells to repair long thoracic nerve palsy … Please.

    • Possibly Sue but when you start saying spinal injuries are costing $2 billion a year and use language like “looking after ” instead of language that suggests value and inclusion … you feed an already paternalistic and negative attitude to disabilities that already exists in our society .. hence my suggestion that he needs to be mindful of the way he speaks of disabilities .. but like you I am in awe of his work.

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