Introduction

Webcast archive: MaterCare conference presentation

This week, get a sneak peek of a presentation Amy will be giving for a conference in Rome.

Webcast archive: MaterCare conference presentation

In this episode of Euthanasia & Disability, Amy Hasbrouck discusses her upcoming presentation for the MaterCare conference with the Euthanasia Prevention Coalition.

Due to a technical issue, there will be no audio/video available for this week’s webcast.

PRESENTATION FOR THE MATERCARE CONFERENCE

  • This week we offer the presentation that Amy will give at the MaterCare International Conference in Rome on September 20.
  • People with disabilities are the population most affected by death-hastening practices.  
    • Everyone with a terminal illness has a disability, but not everyone with a disability has a terminal illness
    • Disability is an eligibility criterion in many Assisted Suicide and Euthanasia (AS/E) laws.
    • The most common reasons cited for life-ending requests relate to disability:
      • Loss of autonomy;
      • No longer able to do things they enjoy;
      • Perceived loss of dignity;
      • Feeling like a burden.
  • Understanding the ways disability is viewed by society can help us understand why disability is seen as reason enough for hastened death.  Disabled scholars have identified several “models” of disability that answer the questions:
    • What is disability?
    • Why does it occur / where does it come from?
    • What and where is the “problem”?
    • What is the “remedy” for the “problem”?
  • The Religious or Moral model of disability was how Western societies viewed disability until about 150 years ago, and there are still remnants today.  It says that disability is the manifestation of a punishment from God for sins or transgressions; or it is a test of faith or potential path to salvation.  The religious model would answer the questions as follows:
    • What is disability? – It is a manifestation of the will of God.
    • Why does it occur / where does it come from? – It is a punishment for sins or a test of faith.
    • What and where is the “problem”? – The person’s character or behaviour.
    • What is the “remedy” for the “problem”? – Live right and pray for healing.
  • The medical model of disability emerged in the 19th century and says that disability is a medical problem that resides in the individual. It is a defect in or failure of the body or mind and is inherently abnormal and pathological. The goals of intervention are cure, amelioration of the condition, and rehabilitation.
    • What is disability? – an abnormality or pathology.
    • Why does it occur / where does it come from? – the body or mind does not conform or perform to “normal” specifications.
    • What and where is the “problem”? – The person.
    • What is the “remedy” for the “problem”? – cure the defect or modify the person to be as close to “normal” as possible.
  • The Social model of disability was developed by people with disabilities in the 1970s.  It says that disability is the disadvantage or restriction of activity caused by a social organisation which takes no or little account of people with impairments and thus excludes them from participation in the mainstream of civic and social life.
    • What is disability? – The conflict between a given person’s needs and abilities, the requirements of daily life, and the resources available in the environment.
    • Why does it occur / where does it come from? – When the environment does not suit the needs of the person.
    • What and where is the “problem”? – In the environment.
    • What is the “remedy” for the “problem”? – Change the environment. 
  • The legacy of the Religious and Medical models is the devaluation and disempowerment of people with disabilities.
    • The eugenics movement which began in the 19th century had strong moral overtones, even as it relied on “medical science” to justify sterilization and euthanasia of people with all kinds of disabilities.
    • A major motivation behind the AS/E movement is the idea that it’s better to be dead than disabled.  While most people are too polite to say it to our faces, we disabled people hear it said often enough to know it lurks in the minds of most people.
    • Thus it’s no surprise that people who develop disabilities do not want to self-identify as disabled.  
      • In every society on earth, becoming disabled means a loss of status, power and prestige.  It usually means loss of employment and descent into poverty. 
      • Also, a newly-disabled person must confront a lifetime of stockpiled stereotypes about disabled people which now apply to them.  From fairy tales to soap operas, physical imperfection is equated with evil, laziness, ineptitude, greed, loneliness and many other negative traits.  Though it would make sense to examine and reject these stereotypes, without an alternative vision, people often simply accept what they’ve been taught.
    • People with disabilities experience rates of abuse much higher than non-disabled persons, often take the shame of the abuse on themselves, and have fewer resources to escape or end the abuse.  
    • Another legacy of the religious and medical models of disability is that public policies that affect the lives of disabled people have been created and carried out by people without disabilities.  Thus, a central theme of the disability rights movement has always been “Nothing about us, without us.”
  • In 1983, “A 26-year old woman, attractive and educated, checks herself into a hospital psychiatric unit announcing her wish to commit suicide. She reports that she has undergone two years of devastating emotional crises: the death of a brother, serious financial distress, withdrawal from graduate school because of discrimination, pregnancy and miscarriage and, most recently, the breakup of her marriage.”  Though the hospital refuses to help her die, Elizabeth Bouvia ultimately wins a court battle for the right to suicide assistance based on the fact that she has a serious physical disability (cerebral palsy). However during the two-year legal battle, her supposedly firm and settled decision to die, had changed.
  • Also during the 1980s, several nursing home residents with spinal cord injuries brought legal claims for the right to have their respirators switched off.  Sometimes referred to collectively as the “give me liberty or give me death” cases, plaintiffs won the right to refuse medical treatment on the theory that their disabilities condemned them to a poor quality of life.  As in the Bouvia case, the courts in these cases ignored the discrimination and barriers that prevented the plaintiffs from living independently and participating as equals in their communities.
    • During the legal process Larry McAfee was contacted by disability rights activists who helped him rent an accessible apartment and arrange funding for personal care assistants.  Freed from the institution, McAfee changed his mind about dying and lived on his own until his death years later.
    • David Rivlin and Kenneth Bergstedt were not so lucky; their families rebuffed all attempts by disability activists to help them gain independence.
  • Nor is this kind of case a relic of the past.  Just last month, Canadian Sean Tagert elected euthanasia rather than be forced to move into an institution far from home because he was denied the assistance he needed to remain in his home.  This despite Canada’s adoption of the Convention on the Rights of Persons with Disabilities, article 19 of which requires states to provide needed services to enable disabled people to live independently in the community.
  • In the 1990s, promoters of assisted suicide such as the Hemlock Society and Final Exit Network included disability as a reason for hastened death.  As well, 70% of the people Jack Kevorkian “helped” to die had a disability rather than a terminal illness (a similar percentage were women). The founding of the disability rights group Not Dead Yet in 1996, and the presence of disability activists at Kevorkian’s second criminal trial that resulted in his conviction for second degree homicide in the death of Thomas Youk, who had a spinal cord injury.
  • Many who advocate for AS/E have disabilities, and cite autonomy and self-determination as justifications for legalizing hastened death.  This creates the inaccurate impression that disabled people support AS/E. In fact, all of the major disability rights groups oppose the legalization of hastened death.  These groups:
    • are run by and for disabled people; 
    • combine members’ personal experience of disability with a detailed analysis of disability policy; and 
    • make the link between disability discrimination and other kinds of oppression, such as racism, sexism, enforced poverty, homophobia and others. 
  • Disability activists recognize that, while the idea of autonomy and self-determination are attractive, the “autonomy” promised by AS/E promoters is an illusion; there can be no free choice to die as long as disabled people don’t have a choice in where and how they live.
  • Disability rights activists focus on four key arguments against legalization of medical assistance in dying (MAiD):
    • AS/E are discriminatory;
    • Legalization is unnecessary;
    • Choice is a slogan, not a reality; and
    • Safeguards don’t work.

AS/E ARE DISCRIMINATORY

  • The movement to legalize hastened death is driven by fear of disability and discriminatory beliefs summed up in the phrase “better dead than disabled.” 
  • Assisted suicide creates a double-standard in how suicide prevention policy is applied.  Though anti-discrimination laws should guarantee equal access to suicide prevention services, in practice, disabled people cannot rely on the suicide prevention safety net.
    • A non-disabled person who expresses a desire to die is given suicide prevention services, even to the point of losing their liberty, for their own protection.
    • A disabled person who expresses a wish to die is often helped to do so.
    • While most suicide attempts are considered a cry for help, assisted suicide can turn suicidal ideation into a completed suicide. 
  • This inconsistent policy is based on the widely-held yet discriminatory belief that the desire to die is rational where the person has a disability.

LEGALIZATION IS UNNECESSARY

  • Suicide, as a solitary, autonomous act, while regrettable, is legal and available to anyone.  
    • There is no “right” to suicide that must be accommodated;
    • Those who ask for AS/E are usually able to commit suicide;
    • Those who cannot commit suicide can refuse medical care and have continuous palliative sedation.
  • AS/E laws are designed to protect medical professionals from prosecution.
  • Disabled people do not have to die to have dignity.

CHOICE IS A SLOGAN, NOT A REALITY

  • Let me reiterate: there can be no free choice to die as long as disabled people do not have a free choice in where and how we live.
  • Factors which limit disabled people’s choice include:
    • Inadequate palliative care;
    • Public policy that favours institutional care over home-based services;
    • Lack of mental health care and peer counseling from people living successfully with similar disabilities;
    • Poverty, unemployment and disenfranchisement;
    • Architectural barriers and lack of transportation.
  • Cost-driven health care policies and decisions also limit disabled people’s options:
    • Barriers to diagnostic services and treatment;
    • Denial of coverage for treatment;
    • futility policies;
    • Managed care requirements for “recovery;” and
    • Assisted suicide is always the cheapest option.
  • This was starkly illustrated with the deaths earlier this year of two members of Not Dead Yet’s board of directors, Carrie Ann Lucas and Bill Peace.  Both were denied medical treatment to maintain their health; Carrie Ann was denied an antibiotic, and Bill could not obtain a therapeutic bed to relieve pressure sores.  In both cases, the insurer paid more in subsequent acute care than they would have to provide the needed service. And in both cases, society lost gifted, highly-educated, articulate leaders with exceptional skills and records of accomplishment.
  • Even in luxurious facilities with caring, stable staff, the lack of control over daily routines, privacy and personal space that are built in to institutional life is intolerable to many people.  Inadequate staffing, high staff turnover, poor maintenance, run-down facilities, violence among residents and abuse by staff can make life in an institution a nightmare.
  • Even where disabled people are able to stay in their own homes, they will often be dependent on unpaid family members who have had to abandon careers to provide personal care.  Alternatively, they may need to rely on agencies that send an ever-changing series of employees who provide assistance according to a one-size-fits-all model without the time or consistency to adapt procedures to the person’s unique needs.

SAFEGUARDS DON’T WORK

  • Prognoses of “six months to live” are often wrong.  As well, the definition of “end of life” or “reasonably foreseeable” death may be so broad as to include people whose death is not expected for years (as happened in a 2017 Ontario Superior Court case: AB v. Attorney General of Canada).
  • Doctors evaluating if a person has the capacity to make life-or-death decisions rarely use the tools designed for that purpose, or assess all of the abilities that go into making such a decision.  As well, they are not required to explain how they weighed external pressures, social or economic factors that could affect the person’s decision-making process.
  • Psychological evaluations are not required for competency or to test for mental illness or other conditions that cause suicidal feelings.
  • Most AS/E laws hold doctors to a “good faith” standard in determining eligibility and complying with safeguards for medical aid in dying.  This is lower than that for medical negligence (“reasonable care and skill”).
  • Where assisted suicide is the method, no impartial witness is required at the death to ensure the person takes the drugs themselves.  If the person struggled, who would know?
  • AS/E laws have minimal reporting requirements, little oversight, and no enforcement provisions.
  • Under such laws, disabled lives are “acceptable losses.”

***

  • Working in coalition:  All roads lead to Rome!
    • The disability rights arguments are the best vehicle to reach our destination;
    • Focus on the common goal;
    • Agree to disagree on other issues; leave your baggage at the door.
  • Affiliating with religious organizations can be hazardous to disability rights groups.
    • Disabled allies are portrayed by the media and perceived by opponents as passive pawns;
    • It reduces disability groups’ credibility with our progressive allies;
    • The religious/moral model of disability continues to have a negative impact.
  • Additional barriers to coalition
    • Disabled activists lack economic clout:
      • Our constituency has limited income;
      • Our costs of participation are higher due to access needs;
      • Groups by and for PWDs are not well funded.
    • Policy and strategy decisions have been made without the participation of disabled people;
    • Our expertise on health care and assisted suicide has been disregarded;
    • We have been excluded from leadership roles;
    • We have been used as tokens.
  • The Remedy is R-E-S-P-E-C-T.