Valuing the lives of people with disability

By Joan Hume (Article originally appeared in Eureka Street)

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?).

Public 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.

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?

For 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.

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