Ireland Needs To Be NOT DEAD YET Part 2

Activist and academic Peter Kearns is engaging with ILMI’s E-Bulletin to post a brief series of articles on the cultural backdrop to why many Irish disabled activists are opposing Gino Kelly’s Dying-with-Dignity (DwD) Dáil 2021 Bill. Peter’s Bi-Weekly articles will explore how some disabled activists in Republic of Ireland (RoI) have steadily become aware of the dangers associated with the call for assisted suicide to be legalised by our Dáil. In this ILMI E-Bulletin blog, Peter Kearns will identify why the distinction between disability & impairment labels and terminal illness in the Dying-with-Dignity debate is a myth.

Like ILMI’s New Year call to rethink the Dáil’s speedy courtship with the DwD Bill, international DPOs have supported networks of disabled people to join a growing alliance of disabled people in opposing the legalised killing of disabled people.  Those involved in social model led collectives such as NOT DEAD YET include people with physical and sensory impairments, learning difficulties, and mental health & well-being conditions and other impairment labels.

International activist on-line platforms such as NOT DEAD YET (NDY) proclaim that any dying-with-dignity arguments or distinction between disability and terminal illness is a myth. NDY point out that definitions of ‘terminal illness’ can never be precise. For example, people with Multiple Sclerosis are disabled people – and yet they are the people targeted most frequently as beneficiaries of assisted suicide legislation, often by Irish non-disabled Dáil Dying-Bill campaigners.

This disability and terminal illness separation myth serves only to create a false distinction between those who will be legally able to request assisted suicide and others who will not. In this way, Irish Dying-Bill proponents claim they seek a small change in the law. But could this small myth based law change be just the start of a crack that can be steadily opened wider and wider until any person may persuade or assist another disabled person to die without consequence.

As an activist and Disability Equality lecturer at NUIG St. Angela’s Sligo, ILMI’s ONSIDE Coordinator Peter Kearns argues that the majority of Irish disabled people would be enabled to consider assisted suicide because of Gino Kelly’s Bill.  Peter tells ILMI’s E-Bulletin that “Disabled people, including people with labels connected with learning difficulties and neuro-diverse conditions, survivors of mental health systems, and people with sensory and physical impairments have internationally demonstrated clear reasons to resist such legislation as the current Dying with Dignity Bill which is moving very quickly through the Dáil process”.  Referring to ILMI’s New Year policy statement demanding a different approach to end of life choices that give a role to Disabled Peoples Orgs. (DPOs) Peter argues that disabled adults are asking for a national representative voice to put forward their fears around having to make a ‘choice’ about being viewed as a burden or their lives being seen to have lesser value based on impairment labels connected with the phrase ‘terminal illness’. Peter feels ILMI has answered that call by demanding that the Bill’s Dáil progress is questioned.

Irish people already have the right to refuse unwanted treatment and for many years, thankfully, suicide is no longer illegal.  Making it legal for already medical model informed professionals to assist someone to die does not give that disabled person a ‘new’ human right. The Bill is all about providing a new immunity from justice for those professionals who provide the clinical assistance. Many Irish disabled activists believe that legalising assisted suicide will inevitably lead to increasingly adverse judgements about the quality of life of disabled people. 

One Canadian disabled activist campaigning against her country’s move towards a DwD Bill named C-7 recently tweeted; “I have experienced doctors, psychiatrists, and surgeons either not wanting to help me or being unwilling to help me. I’m not accepting being offered euthanasia under Bill C-7 after decades of neglect”. ILMI is only asking can Ireland still say that disabled people aren’t threatened by the speed of the Dáil Dying with Dignity Bill? The speedy progress of Gino Kelly’s DwD Bill will undoubtedly begin to affect the many disabled people who cannot speak for themselves and who have not requested a death ‘choice’. 

NOT DEAD YET international websites point to research in the Netherlands that has shown how legalising assisted suicide has led to nearly a quarter of overall intentional killings of patients happening without request. NDY also argue that the research has shown that intentional killings, by either withdrawal of treatment without the patient’s permission or by deliberate over-doses of symptom control, have increased.  NDT activists point out that nowhere is there evidence to show that legalising assisted suicide has deterred medical practitioners from intentional acts, or that the number of these professional dying-with-dignity actions has declined.

If we give in to the demand to assist in a suicide, we are reinforcing attitudes that say that the lives of disabled people are not worth living – that they are a particular burden to themselves, their relatives and friends, and the state.  These negative attitudes are faced by disabled people all the time. This discrimination does not just happen at moments of crisis or imminent death, they are the underlying reason why society is so inaccessible to disabled people and excludes and isolates us systematically. 

Peter also wants to point towards the robust campaigning by our UK NOT DEAD YET colleagues, who don’t trust non-disabled British campaigners for ‘assisted dying’, who say they want to change the law for terminally ill people, not for disabled people. UK activist are asking why do disabled people feel threatened by the campaigning? The UK social model led collective NOT DEAD YET strongly argue that ‘terminal illness’ and disability are not mutually exclusive. ILMI’s policy response to the rapid progression of the Irish Dying-with-Dignity Bill also points out that many people who are terminally ill are disabled people of one sort or another as well.

As with Irish social media sites such as End-Of-Life, UK non-disabled DwD Bill campaigners say they want to change the law only for the terminally ill, but they are supporting the campaigning of Debbie Purdy, who wants the British law to be changed for her but who isn’t terminally ill. In 2012, the Scottish MP Margo MacDonald tried to get a bill passed by the Scottish Parliament that would legalise assisted suicide or euthanasia for anyone who is physically incapacitated to the extent of not being able to live without the support of others. To read more about the Scottish DwD Bill and how it was defeated in 2015, check-out Guardian newspaper

In the next ILMI E-Bulletin at end of March, Peter Kearns will explore international arguments by disabled activists who have turned the ‘dying’ discourse on its head and are having face-2-face discussions with their governments about how the assisted suicide one-sided argument can prove a danger for those with terminal illness impairment labels who are not being enabled to effectively engage in important ways with suicide prevention supports. Across the world, with the sudden pandemic like spread of Dying-With-Dignity state legislation, has seen the DPO community wake-up and become vocal on the need for targeted suicide prevention services for disabled people, which are led by disabled activists. Peter will be suggesting that Irish DPOs such as ILMI follow the successes of our international colleagues in providing activist led collective alternatives to the single suicide tunnel vision dignity narrative.

By Peter Kearns

Note: Peter is writing in a personal capacity as a disabled activist and not representing the views of ILMI.

ILMI has made a submission to the Dying with Dignity Committee in January which can be accessed in PDF or Word Document to download.