Introduction

Webcast archive: The CCA Reports – Part I – Overarching problems

Today, we discuss the many problems with the way disability is viewed in the Council of Canadian Academies reports.

Webcast archive: The CCA Reports – Part I – Overarching problems

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:

  • The CCA Reports – Part I – Overarching problems

Please note that this text is only a script and that our webcast contains additional commentary.

THE CCA REPORTS: SOMETHING ABOUT US WITHOUT US – PART I – OVER-ARCHING PROBLEMS

  • This week, we’re starting a series of four webcasts looking at the Council of Canadian Academies reports that were published in December.  The CCA was asked to examine the possibility of extending eligibility for assisted suicide and euthanasia (AS/E) to mature minors, people whose suffering is only psychological, and those who make advance requests for AS/E before they become incompetent.
  • Today we’re focusing on some problems that apply to all three reports. Over the next few weeks we’ll talk about each report separately.
  • The major problem that shapes the form and content of the whole report is that disability discrimination is not considered relevant to the issue of AS/E.  This shows up in many different ways:
    • It begins with the make-up of the working groups that wrote the report; none of the 43 members was disability-identified (some had professional experience with disability issues).  Though the submissions of disability organizations were quoted, and two of the 32 report reviewers are disabled people, these measures are inadequate because of how the study was carried out.  The report is designed as a dialogue, a back-and-forth between the differing views of working group members.  To be left out of the working groups means to be effectively silenced in the discussion itself.
    • The authors did recognize that failure to consult with Indigenous people, (both in adopting the Medical Assistance in Dying law and writing the report) was a grave error.  They admit that even the addition of an “Elders Circle” was inadequate to make up for the essential perspective, experience and knowledge that were lost due to the exclusion of first nations voices. Yet no such concern was expressed about excluding disability leaders from the process, despite the degree to which disabled people are affected by AS/E, and the depth of the disability rights community’s knowledge and understanding of this issue.
    • The reports don’t acknowledge that AS/E is applied only to disabled people, whether or not they also have a terminal illness.  Put another way, nondisabled people are not eligible for AS/E. Thus, the reports don’t take into account the excessively large impact of AS/E on disabled people.
    • The Working Group didn’t take notice of the connection between AS/E and disability discrimination. In their view, “disability and vulnerability can be understood as an interplay between a person’s impairments and the accommodations available in their environment …“  (MM p. 148) with no mention of explicit and implicit discrimination, prejudice and barriers.
      • The Working group didn’t note the importance in the fact that “parental requests for MAID for their children outnumber requests by minors themselves by five to one.” (MM p. 110)
      • Nor did they acknowledge the “Pandora’s box” of negative images and stereotypes about disability that most non-disabled people carry with them, without knowing it.  When someone becomes disabled, or has a disabled child, the box is opened, and the negative beliefs are suddenly applied to themselves or their disabled children.  Without support, understanding, and an alternative view of disability, newly-disabled people, and disabled children, will develop low self-esteem and a belief that they deserve to die.
  • The idea that it is better to be dead than disabled – or that death is in the “best interests” of disabled people – is also woven through all three documents.
  • Thus, a “failure rate” (non-compliance) that is considered acceptable in the AS/E program would never be tolerated in a service for the non-disabled public, like consumer products or airline safety.
    • Québec’s Commission on end of life care boasts of a 90% compliance rate with eligibility criteria and safeguards.
    • From 2011 to 2018, Dutch physicians complied with due care requirements in 12 of 16 cases where the person’s decision-making capacity was questioned.  That’s only 75%. (AR p. 129).
    • Dutch end-of-life clinics were also “involved in 19% of cases [where] due care criteria were not met” even though they handled less than 5% of all euthanasia cases. (AR p. 132).
  • People with disabilities are not seen as a group whose civil rights are jeopardized by AS/E laws and practice.  The Carter decisions voiced this point of view, but it remains controversial.
    • For example the authors discuss the “disability paradox,” a fancy term for the fact that actually having a disability is not as bad as people think it will be.  The authors never mention that this “paradox” is based on a discriminatory assumption; that life with a disability is a fate worse than death.
    • While advocates on both sides submitted personal stories, such accounts were treated differently depending on their source.
      • Descriptions of disability discrimination were either ignored (such as the story of Jerika Bolen) or dismissed as isolated incidents; “[w]hile these cases highlight problems experienced by individuals, no conclusions can be drawn from them about support services in Canada as a whole,” (AR p. 148)
      • On the other hand, stories provided by AS/E advocacy groups were seen as fighting unjust deprivation of legal rights; “[m]any of the personal stories shared by Dying with Dignity Canada in its submission to the Call for Input expressed … the unfairness of losing the option to receive MAID.” (AR p. 138)
  • The absence of a disability rights voice among the working group members is especially noticeable in the report’s discussions of autonomy.
    • The working group debated whether autonomy means society should provide everyone a level playing field, or should it mean everyone is “free” to play on the field, whether or not it’s accessible?
    • Equality, equity, and justice are related, but not the same thing. This is often shown by a graphic of three children of different sizes watching a ball game from behind a wooden fence.
      • Equality means providing the same supports and resources, regardless of the person’s needs or reference to the outcome. Each child gets one box to stand on.
      • Equity requires providing supports that take individual needs into account. In the picture, the smallest child stands on two boxes, the medium-sized child gets one box, and the tallest child stands on the ground; all three can watch the game.
      • Real justice involves removing the barrier altogether! The wooden structure is replaced with a chain-link fence that clears the view for everyone.
  • Where the authors talked about safeguards, it was always in a “perfect world” scenario, whereas safeguards are supposed to be effective even in “real life,” worst-case scenarios.
    • The discussions of capacity determination are missing important elements:
      • For example, in the Mature Minors report, the authors described the capacity determination process without reference to the high rates of abuse of disabled children, or the broad popular support for parents who kill their disabled children and claim a “mercy killing” defence.
      • Capacity determination is described as a detailed process, using assessment tools to establish specific abilities; whereas studies have shown that doctors rarely use assessment tools, don’t use them correctly, and don’t assess all the abilities that add up to capacity.
    • We already know that doctors face no consequences for submitting documentation that is incomplete or contains errors, or for filing reports late or not at all.
    • Euthanasia is supposed to be the last resort after palliative care fails.  In practice it’s often the first option presented to a person in distress.
    • The report didn’t recognize factors that can influence whether consent is truly “informed.”
      • The reports did not address the need to ensure that a person with disabilities has an effective and impartial means of communication.
      • What’s more, If the doctor doesn’t know about self-directed personal assistance services or if palliative care is not available in a particular community, the person in distress will not have a real choice with respect to AS/E.
  • Problems such as substance abuse, homelessness, poverty, and domestic violence are linked more to the individual than to their social, economic, political and discrimination-based causes.  Solutions are therefore left up to the person, rather than the society that created the underlying condition.
  • In a similar vein, socio-political issues related to disability are stripped of their political importance.
    • Caregiving is described as burdensome and exhausting, and there is even some admission that the burden of caregiving falls disproportionately on women. However the authors don’t connect the dots between negative attitudes toward disabled people, the belief that caregiving is “women’s work,” its devaluation (and low pay) as an occupation, and the expectation that family members (especially women) must take on these responsibilities without compensation.
    • In their discussion of autonomy, the council ignores the impact of disability discrimination and the medical model as factors in the power imbalance between a parent and child, or doctor and patient.
    • “Mental disorders” are disconnected from causes related to discrimination, such as isolation, inadequate health care, abuse and bullying.  For example, the experience of many disabled children is comparable to that of LGBTQI people growing up in a society that sees a fundamental part of them as “other” and bad.” The fact that many people with physical, sensory or cognitive disabilities often end up with mental health issues due to the effects of discrimination is not seen as a political issue.
  • As so often happens, the working group distinguishes between committing suicide with and without medical assistance, and assigns positive and negative values. Ending one’s life without the help of a medical practitioner is portrayed as dangerous, selfish and tragic; while doing so with society’s permission and help of a professional is portrayed as safe, humane and peaceful.
  • Suicide prevention is only discussed in the context of mental disorders as the sole reason for the AS/E request.
    • This reflects the ongoing effort by MAiD promoters to exclude AS/E from the definition of suicide.
    • In the “mature minors” paper, little attention is paid to teenage suicidality.
    • There is no indication that problems with self-esteem and suicidal feelings caused by disability discrimination need to be attended to.
  • These omissions and errors cast doubt on the value of the CCA reports as a thorough investigation of the questions presented.  Given the investment of time and resources in producing the report, it will be touted as the “final authority” in research on the topic, and will be cited in court cases, legislative records and academic works around the world for years to come.  The tragedy here is that, once again, the disability rights perspective has been excluded when so many disabled lives are on the line.

(Abbreviations for report citations: MM = Mature Minors, AR = Advance Requests, MD = Mental Disorders)