Romanticised rhetoric of assisted dying bears little relation to reality

The Joint Committee on Assisted Dying had its first public hearing recently. Its task is to determine whether people should have a statutory right to assisted dying. Safeguarding is the intent to protect. Yet there is a sense that safeguarding is flimsy because it can never be human-proofed.

In the war of words and diverse ideologies, concepts like ethics, politics and values become abstract and academic. The reality of lives that are often considered less or different or troublesome become devoid of agency. The perception of illness and disability is understood as loss of dignity, loss of agency. Bodily integrity is presented as the loss of personhood.

Official euthanasia started with the Eugenics movement of the 1800s. Today, the language of assisted dying is presented as more soothing than euthanasia. Compassion, pain relief and removing a familial economic burden was the rationale.

The quality of our lives – due to lack of supports and resources – can eventually propel thoughts of not wanting to live

We carry history in our bones. Reading history is a particular experience, but to visit a death camp warrants courage and a certain emotional disposition. My impairment, my Traveller ethnicity, means I fall short of the strength required.

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The well-known death camp in Bernburg, Saxony-Anhalt, Germany, during October 1939 was one of many public health authorities that began to encourage parents of children with disabilities to submit their children. The programme’s functionaries called their secret enterprise ”Aktion T4″. By June 1940, the mobile gas vans were being replaced with gas chambers.

By August 24th, 1941, more than 70,000 patients had been killed. Some of these children and adults with disabilities also had Roma, Sinti and Jewish identities. This became the model for the subsequent murder of millions of Jews, Roma, Sinti and gay people.

Ableism, and its pervasive and pernicious norms, does not just belong to history; it is a paradigm that requires a long-awaited shift. It is ingrained in all of our structures. Ableism defines the totality of what it is to be human, with no allowance for any deficit of this perception of human perfection. The internalisation of this toxic ideology is menacing to people with impairments. The term “ableism” is relatively new in our vocabulary, yet it is a cultural and historical lens through which many of society’s views are formed.

[ Euthanasia is sometimes the right choice ]

Our voices are drowned out by an amplified chorus of legislators, care policymakers, media and medical professionals. The insidious messages given to us regarding being a burden to our families, to the State and the shame and stigma associated with impairment and dependency, permeates every area of our lives. As in all communities, there is diversity of opinion on assisted dying within the disability community. However, the quality of our lives – due to lack of supports and resources – can eventually propel thoughts of not wanting to live.

The Assisted Decision Making Act 2015 allows for advanced healthcare directives. This advanced planning is a positive invitation. It may well be the conduit that slows the speed of assisted dying. Advanced planning gives time for reflection.

Vulnerability brings fluidity. Coercive control is subtle. Voices that are considered reasonable can often sway us in our hour of darkness. Values such as strength, power, control, agility, speed are all held as aspirations to live the ultimate life. The heady mixture of worthlessness, shame, stigma, frustration and isolation – coinciding with devaluing your life – is emotionally crucifying. The offering of adequate and appropriate supports is often slow in coming.

In Belgium and Canada, where assisted suicide has been legal, research shows us a frightening vista.

One report found that 40 per cent of Belgians favoured “no longer administering expensive treatment to prolong lives” of anyone over age 85. .

Half of Canadians would allow people to seek assisted dying due to a disability. Twenty-eight per cent would expand the guidelines to include homelessness, and 27 per cent would allow it in cases of poverty.

Depression, loss of hearing, inability to provide for own personal care – the litany of non-terminal reasons where approval for assistance was given is extensive. The gradation of context and circumstances slipped. Dying became a viable option. It started with terminally ill people, then older people. This has led the way for many disabled people to die.

In my community, 11 per cent of Travellers die by suicide. Racism, analogous to ableism, is the silent virus that kills us. Self-esteem and self-worth are so low that most families have faced this endemic. The romanticised rhetoric of assisted dying bears no reference to the actuality of holding a loved one’s body in your arms because they felt a burden to the family. That body, that person, had spiralled into a vacuum of brokenness. The paradox of advocating and looking for resources in relation to suicide prevention is ironic.

In the UK during Covid, the learning disability mortality rate was six times higher compared with the general population. Covid demonstrated how disposable people with chronic illness, terminal illness and impairments can be seen to be. “Do Not Resuscitate” orders were placed without consent. The Committee on Assisted Dying would do well to remember this lesson. When we talk about assisted dying, we need also to talk about assisted living.

Rosaleen McDonagh is a playwright from the Traveller community.

If you have been affected by any of the issues raised in this article, you can freephone the Samaritans 24 hours a day for confidential support at 116 123 or email jo@samaritans.org