Sue O’Reilly, who has guest written today’s column on The Angry Cripple, is a freelance journalist. She is is a parent and raised her son with cerebral palsy until last year, when he died at the age of 21. She co-founded Australians Mad as Hell with Fiona Porter to campaign for an NDIS and established a charity called Fighting Chance to help people with disabilities pay for essential therapy services.
When does any form of disability turn into a “disease” to be eradicated?
When it is being discussed by doctors and medical researchers seeking money from governments, corporate donors and members of the public to fund research aimed at finding ways to prevent and/or cure some form of disability.
Now, you may think that no one in this relatively enlightened day and age, however well-meaning and well-intentioned, would describe any form of disability as a “disease”.
A condition which there may one day be ways to prevent or cure perhaps… but no one would talk as though a lifelong physical or intellectual disability was akin to rabies or leprosy or cancer – would they?
If that’s what you are asking yourself, then go to the website of the Cerebral Palsy Alliance Research Foundation, and also one of its main financial sponsors, the Balnaves Foundation, and read all about it for yourself.
Cerebral Palsy Alliance is the new, improved “brand” for one of Australia’s largest disability charities, the Spastic Centre of NSW, which early last year bowed to about 20 years of pressure and pleas and agreed to change its name to something a little more… up-to-date.
You may recall the Spastic Centre was responsible a few years ago for a television commercial, aired nationally, in which the pitch for donations featured parents graphically describing how devastated they felt when told their children had CP – with the children sitting alongside them.
Around the same time, the entrance to the Spastic Centre’s headquarters in Sydney featured a giant bill-board proclaiming: “There is as yet no pre-birth screening test for cerebral palsy”.
Clients with CP, parents and families arriving for appointments couldn’t miss it, and nor could anyone driving past for that matter.
When challenged as to what a pre-birth screening test might be designed to achieve, and whether it could possibly be anything akin to the pre-birth tests designed to detect – and with parental consent, abort - foetuses with genetic and chromosomal abnormalities such as Down Syndrome, Spastic Centre staff replied that it merely had something to do with “providing early intervention services more efficiently”. But fairly soon after, the poster disappeared – never, as far as I’m aware, to be seen again.
Sadly, however, the thinking behind that TV ad and poster has proved far harder to dispel.
Although founded by a small group of Sydney-based parents in the late 1940s to provide services and supports for people with CP in NSW and their families, the Spastic Centre/Cerebral Palsy Alliance has over recent years become increasingly enamoured with the startlingly ambitious idea of “leading the world in the search for the prevention and cure of cerebral palsy”.
Given the explosion in neurological, genetic and stem cell research in high-powered universities, specialist teaching hospitals and research institutes throughout north America, Europe, Asia and Australia over the past couple of decades or so, we can only wish the former Spastic Centre of NSW well in its self-anointed role of “world leader” in this particular field of work.
Yes, research is important. Yes, research is desirable. And yes, someone has to do it. But exactly the same argument applies to the far more mundane-sounding but equally vital goal of helping provide wheelchairs, therapy services, respite and decent supported accommodation for people with disabilities - and as it happens, the latter is what the Spastic Centre/Cerebral Palsy Alliance was created to do.
There are no natural linkages between present-day disability service provision and long-term medical research. They are two very different things - which is perhaps why, as the CPA actually boasts, it is “unique” in trying to do both.
Just as worrying though are the hopelessly mixed, contradictory messages this organisation is now spending money on promoting to the “world” (or at least the citizens of NSW) when its research arm asks for money from governments, corporate donors and the public to – as it puts it – “help us achieve our vision: a future without cerebral palsy.”
For decades, disability rights campaigners and activists have fought desperately hard to beat back the pessimistic, negative, medical-model view of disabilities like CP as some terrible, untreatable, incurable affliction from which people “suffer”.
It was the far more optimistic and tolerant social-model view of disability that led to the closure of the gruesome quasi-hospitals in which people with disabilities used to be locked away, and to the spread of concepts like “inclusion”, “participation” and “basic human rights”.
How is promoting a “vision” of a world without some form of disability, whatever it may be, in any way helpful to people living with that form of disability today? For instance, would I have wanted my late son, who had CP, to have heard his disability publicly described as a “disease” that needed to be “eradicated”, as it was late last year on ABC TV by the head of the Balnaves Foundation in a news story sparked by a CPA Research Foundation media release? No, I would not.
My son was a happy, cheeky, wise and much-loved person who, precisely because he had cerebral palsy, taught his parents and siblings a vast amount about what really matters in this world, brought us into contact with kind, inspiring and generous people and changed all our lives for the better.
As the US politician Sarah Palin wrote recently about her young son, who has Down Syndrome, “families of children with special needs are bonded by a shared experience of the joys, challenges, fears and blessings of raising these beautiful children, whom we see as perfect in this imperfect world. Our children are a blessing, and the rest of the world is missing out on not knowing this”.
One day, medical researchers may well find a way to prevent all the many causes of cerebral palsy, maybe one day even come up with a cure. Maybe one day there will be no such thing as “disability”. Maybe one day medical researchers will even achieve human perfectibility.
But in the meantime, do you think some research genius might be able to come up with an answer as to why kids with CP in NSW have to wait up to three years for a bloody wheelchair?
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