06:35, June 01 62 0 theguardian.com

2018-06-01 06:35:29
We’re told we are a burden. No wonder disabled people fear assisted dying

Opposition to assisted suicide – also called assisted dying – is characterised as being the preserve of the religious, stuffy and outdated, like religious opposition to gay marriage and abortion. In reality, some of the loudest voices opposing it are those of people with disabilities – because we have the most to fear. A poll done by Scope (a disability charity) showed that the majority of disabled people (64%) were concerned about moves to legalise assisted suicide.

Arguments around the legality of suicide and the right to refuse treatment are often conflated with assisted suicide. Suicide is legal, and there is already a right to refuse treatment. People with mental capacity can also create an advance directive to ensure their wish to refuse treatment is respected in future. This leaves people often able to die on their own terms. What assisted dying advocates are requesting is to create a system in which it is legally and morally permissible for people to engage in a deliberate action designed to end someone else’s life.

There are two main models for assisted suicide legislation: the American (Oregon), and the European (Belgium and the Netherlands). The laws in Oregon restrict assisted suicide to those who are terminally ill, with less than six months to live. The number of people dying this way has increased from 15 in 1998 to 143 in 2017. There is no obligation to establish whether the petitioner has a treatable mental health problem underlying their desire to die. Nor is there one to ensure that they are not under pressure from another person. It is difficult to even establish life expectancy. Jane Campbell – the former commissioner of the Equality and Human Rights Commission – has spoken about fluctuations in her life expectancy and when it affects eligibility for assisted suicide, the stakes would be high.

Some 5% of people in Oregon dying by assisted suicide cited financial pressures as a cause. Meanwhile, the number citing being a “burden on family/friends/caregivers” increased from 13% in 1998 to 55% in 2017. This tallies with Scope’s research that the majority of people with disabilities are concerned that legalising assisted suicide might lead to disabled people choosing it in order not to be a burden on others.

Under austerity people who are disabled, ill or elderly are constantly taught that funding our health and social care is a burden – that we are inherently a burden. I am given so little of the social care I need that I am forced to rely on unpaid care from friends to survive – and more than 10% of the population are providing unpaid care. Legalising assisted suicide may cover these cracks but only by ending our lives. In the US, insurance companies are refusing to cover the costs of treatments, while offering to pay for assisted suicide – which quickly becomes a useful cost-saving measure.

In Belgium euthanasia for “unbearable psychological suffering” is legal. Psychiatrists are tasked both with preventing suicide, and acting as the gatekeepers to euthanasia. Even the architect of Belgium’s assisted suicide legislation, Wim Distelmans, is concerned that people are being offered assisted suicide under this legislation too liberally while treatment options remain. As I know, mental illness can feel controlling, pervasive and hopeless – yet now the clouds have lifted, I am happy still to be alive.

Advocates for assisted suicide argue for the existence of an advance directive so people, with dementia for example, could decide to have their life ended were they to lose mental capacity. In the Netherlands, a doctor was cleared after having the family of a woman with dementia hold her down so he could give her the lethal injection. Her refusal of euthanasia in the present day was weighed against her historical desires, and she died.

Society’s priority should be to assist us to live, not to die. Provide a free social care system funded by progressive taxation that allows us to be productive, active community members. Increase NHS funding. Cut waiting lists – there are currently 4 million people awaiting treatment. Fund wheelchairs and assistive technology. Root out the disableism that leads two-thirds of people with disabilities to think that we’re seen as a burden on society. Only then can you come back to me and tell me that assisted suicide is no risk to disabled people.

I can envisage no safeguards that would prevent people being pressured into ending their lives, by interpersonal, financial or social means. All I see is a system which divides lives, offering suicide prevention to some, and euthanasia to others. When I am low and feel I cannot go on with life as a disabled adult, those around me support me, affirm that my life has meaning, and help me continue to survive. Yes, my suffering is sometimes unbearable, but the faith my loved ones have in me makes me able to bear it. Don’t take that away, by legitimising assisted suicide as the right, and gracious choice.

Jamie Hale is a UK-based poet and artist, and an activist with groups such as Disabled People Against Cuts, and Not Dead Yet UK

Topics