Valuing the lives of people with disability

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Living with a disability can be a real pain. We are constantly being judged and found wanting: by our appearance (never attractive enough), our state of being (we lead lives of unmitigated misery and suffering), our economic cost (leaners and lifters) and our mental competence (can she really talk?).

xxxxxPublic debates on our worth not only dismiss the validity of our lived experience but have profound implications for political and social responses. Even though we live in supposedly more enlightened times, it is a perpetual struggle to have our voices heard and taken seriously. Many people think we can't do anything much at all.

Ever since I was first thrust into the world of quadriplegia 45 years ago, bewildered, grief-stricken and in shock, I have navigated attitudes ranging from deep ambivalence and pity, to open hostility, bigotry, condescension and low expectations.

Although there have been many changes for the better over these decades — in the birth of the disability rights movement; in improved access to the built environment, public transport, education and technology; in anti-discrimination legislation and especially the introduction of the NDIS — the status of people with disabilities remains as a marginalised and often despised group. Many people still believe our lives are not worth living.

Nothing illustrates this more tellingly than the massacre on 26 July this year of 19 severely disabled residents as they slept in their beds at a residential care facility in Sagamihara, Japan. A further 26 were wounded. The perpetrator, Satoshi Uematsu, a former employee sacked for his disturbing views about the residents, upon surrender to the police was defiant and proud of his 'achievements'.

'I did it,' he is claimed to have boasted. 'It is better that disabled people disappear.'

In a letter he wrote to a politician in February, a few months before the crime, he outlined in detail his plot to kill all 260 of the residents and his belief that he should be rewarded for his contribution to Japan and world peace. He described people with disabilities as only creating 'misery' and that they should all be 'euthanised'.

Indeed the Japan Times described the mass slaughter as a 'mercy killing'. I can't see anything merciful about slitting the throats of 45 people! And although the initial story was reported worldwide, unlike with other mass killings there were no candlelit vigils, no fund raising concerts, no photographic honour roll of the dead and wounded, no celebration of treasured lives lost.

 

"Choosing death over life with disability is perceived as noble, brave and compassionate. Well those 15,000 of us currently living with spinal cord injury in Australia would beg to differ."

 

Although it is the usual practice, the Kanagawa prefectural police have not released the names of the victims to 'protect the privacy' of the bereaved families. It was reported that the relatives of the slain did not want their loved ones named because there was such shame attached to having a disabled family member it would affect the marriage prospects of siblings.

Whether Uematsu is ultimately deigned to be 'insane' and unfit to stand trial, there is no escaping the fact that his deed is the ultimate hate crime against people with disabilities who were deliberately singled out because they were disabled. And Australia is not exempt from crimes of hatred and abuse wreaked upon its disabled citizens. Our current royal commission into institutional responses to sexual abuse has exposed many such offences.

So an event like Spinal Cord Injury Awareness Week (5–11 September) is vitally important to enlighten the general public about the reality of the lives of people with spinal cord injury.

It also helps counter the stereotypes and misinformation peddled in films like Me Before You and Million Dollar Baby. Both films portray having quadriplegia as a fate worse than death and consequently advocate euthanasia as the only way to resolve their misery. Choosing death over life with disability is perceived as noble, brave and compassionate. Perhaps it can even contribute to world peace.

Well those 15,000 of us currently living with spinal cord injury in Australia would beg to differ. The majority of us, 52 per cent, have quadriplegia (tetraplegia); 48 per cent have paraplegia. Men outnumber women by four to one. We are mainly injured in motor vehicle, pedestrian and sporting accidents, a smaller number by workplace and other falls, by violence or by medical complications from illnesses like cancer.

Most of us live productive, busy lives with loving relationships, and contribute positively to our communities. Some of us are singers, actors, performers, IT professionals, lawyers, business people, academics, writers, volunteers, office workers, teachers, paralympians, housewives, public servants, community workers, accountants, access consultants, students, tradespeople or health professionals. Some of us like sitting in the sun and contemplating life; some like going to the pub or placing a bet on the horses. Some of us are disability activists and seek to change the world.

In my own life, I returned to high school teaching after my accident, and eventually met and befriended like-minded people with disabilities, especially as momentum built towards the watershed International Year of Disabled Persons (1981). Gradually my fears and sense of alienation began to disappear as collectively we drew strength and motivation from each other, fighting against the barriers to equal access to, and full participation in, all aspects of community life. Shame was displaced by the 'glorious rage' of advocacy for disability rights and pride in our achievements.

The world, however, is still a dangerous place for us when we have US presidential candidate Donald Trump cruelly mock a disabled journalist on national television and then demand an apology after his behaviour is challenged. It is still dangerous when public sympathy for parents who murder their disabled children is greater than for the victim. It is still dangerous when our physical vulnerabilities are exploited by those who wish us harm.

It is also dangerous when Australian philosopher Professor Peter Singer can postulate that the life of a quadriplegic is worth half that of an able-bodied person ('Why We Must Ration Health Care', New York Times, 19 July 2009) and get away with it. Infuriatingly, he is held in high public esteem and his views widely disseminated. Professor Stephen Hawking is a world renowned astrophysicist and a quadriplegic from motor neurone disease. Is his life worth half that of Singer's?

What are the real implications of imposing economic and other social measures onto the lives of people with disabilities? Isn't there an ever present probability that without an inclusive and accepting community, without believing in our possibilities rather than seeing only our limitations, we will spawn the likes of another Satoshi Uematsu here?

 


Joan HumeFor over three decades Joan Hume has played a prominent role in the birth and development of Australia's disability rights movement. Joan has been the president of Spinal Cord Injuries Australia since 2014 and was recently awarded the Alumni Award for Community Achievement from the University of Sydney.

This week (5-11 September) is Spinal Cord Injuries Awareness Week.

Topic tags: Joan Hume, Spinal Cord Injuries Awareness Week, quadriplegia, paraplegia, euthanasia


 

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Thank you very much for this excellent article!
Justin Glyn SJ | 06 September 2016


We need more eloquent and powerful protests like this. It's dangerous to take for granted our society's commitment to just and humane treatment of all its citizens - as soon as there's pressure, particularly financial pressure, we start looking to find those who have fewer human rights than we do. Disguising financial necessity as loving mercy is just the beginning..
Joan Seymour | 06 September 2016


An outstanding article. I suffer from Fibromyalgia, Osteoarthritis and Thoracic Spondylitis and at the age of 38 carry at walking stick with me and in public I suffer the same discrimination that you detail here in this article. You speak for all people here with disabilities with the words you have written. I am so sick of being thought of as a burden to society when it is not a lifestyle choice to acquire a disability. It just happens without your consent. People without disabilities need to understand that we too are just as human as they are with hopes, dreams needs and wants. Ours are just as valid as theirs. Once they recognize that fully, then I think profound change will happen.
Matthew Cheyne | 08 September 2016


Good to read a strong critique of the dangerous attitudes towards disabled people. For too long, people in the public sphere have been nauseatingly sucking up to Singer for decades, and any counter voices have been shouted down as wowsers.
Anthony Grimes | 08 September 2016


Timely article. I work in the disability sector. My clients have severe intellectual disabilities. They can be confronting at first, and many people don't take the trouble to get to know them. When you do, you appreciate them for their courage, generosity, love of life and for their unique personality and take on the world. In ''the old days'' (in some cultures at least) those with intellectual disability (e.g. the ''village idiot'') were thought to be specially chosen by God, and treated with kindness and compassion. Now the likes of Peter Singer say these 'special' people are no more than a burden on society. Singer has even suggested people with severe disabilities should be killed at birth. It is appalling that this man, with his ignorant, cruel and arrogant attitudes toward the disabled, is feted around the world. He should be shunned.
Monty | 08 September 2016


Bravo, Joan. Your story is one of extraordinary courage, hope and respect for life. You are a wonderful example to us all.
Lorna | 08 September 2016


Thanks for the article Joan and many blessings to Matthew Cheyne for reminding us of the bravery ,resilience and perseverance of people who live with daily challenges. Accepting our limitations and remembering how each of us is special , unique and lovable can do wonders for our own self esteem and can be a great gift to offer to others. Pain admittedly is a "bummer" Matt but maybe, just maybe it makes those good days even better while the challenge of living with it can lead us to a state of awareness that certain people will never know. Thanks for your message. You will be in my thoughts .
Celia | 08 September 2016


Thank you for your excellent article. I recall the richness that has come to my life by my interaction with people with a disability. Joan all the best in your endeavours to have all people with a disability be treated with the dignity very human person deserves.
Marie O'Shea sgs | 08 September 2016


As if people with disabilities don't have enough to deal with without the utilitarian types like Singer. Christ have mercy.
Frank S | 08 September 2016


The more we see, meet and greet people, who just happen to have a disability, the more we learn to appreciate differing capabilities.
David Freeman | 09 September 2016


Dear Joan, Thank you for the clear exposition of prejudices and for your lovely self. Your lucidity and sheer intelligence re the issues relating to attitudes to people with disabilities is exceptional . Thank you .
Faye Lawrence | 09 September 2016


Thank you Joan. An excellent and timely reminder of the deep trends underlying our attitudes and the potential for abuse at so many levels. Thank God for people of your courage and insight.
Jenny Gardner | 10 September 2016


Thank you Joan for an intelligent, passionate and eloquent article.
Catriona FitzGerald | 10 September 2016


Thank you, Joan, for this thoughtful and passionate article.
Frances Doherty | 11 September 2016


Excellent article! Please write more (social inclusion week in October, International Day for people with disability in Dec.). Also, I'm aware that there the "NSW parliamentary working group on assisted dying" are planning to introduce a bill this spring parliamentary session.... Important for us all to be vigilant about protecting our rights and valuing all lives (not just the lives of "able" bods)
Claire | 12 September 2016


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