Introduction

Webcast archive: United Nations Special Rapporteur on the rights of people with disabilities

This week, we summarize important points from the UN Special Rapporteur on Disability's statement on her visit to Canada, and pay tribute to advocate Denise Karuth.

Webcast archive: United Nations Special Rapporteur on the rights of people with disabilities

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

  • United Nations Special Rapporteur on the rights of people with disabilities – observations on her visit to Canada
  • Remembering Denise Karuth
  • Corrected link

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

UNITED NATIONS SPECIAL RAPPORTEUR ON THE RIGHTS OF PEOPLE WITH DISABILITIES, OBSERVATIONS ON HER VISIT TO CANADA

  • The United Nations Special Rapporteur on the Rights of People with Disabilities, Ms. Catalina Devandas Aguilar, visited Canada between April 2 and 11 to gather first-hand information about the status of people with disabilities in Canada, to determine whether disability rights are being respected, and to make suggestions to improve compliance with the convention on the rights of persons with disabilities.
  • On April 12, the office of the Special Rapporteur issued some preliminary observations; a final report will be presented at the 43rd session of the United Nations Human Rights Council in March of next year.
  • Ms. Devandas mentioned that Canada has ratified the Convention on the Rights of Persons with Disabilities and its optional Protocol, the Marrakesh Treaty (to provide access to print texts for people with vision and reading disabilities) and most of the other core human rights documents.
  • Ms. Devandas noted, however, that Canada has not ratified some important human rights treaties, including:
    • The International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families (ICMW)
    • The international Convention for the Protection of All Persons from Enforced Disappearance (CPED)
    • The Optional Protocol to the CAT
    • The Optional Protocol to the ICESCR
  • She further encouraged Canada to withdraw its “interpretive declaration” related to article 12 of the CRPD, which states that Canada “reserves the right to continue to use substitute decision-making in appropriate circumstances.”
  • The statement is somewhat long, and covers a lot of ground, but it’s worthwhile to read the whole thing.  We don’t really have the space to review it thoroughly here, but we will highlight a few important ideas.
  • The Special Rapporteur points out the limited federal control over matters covered by the CRPD, and that only Ontario, Manitoba, Nova Scotia and Québec have adopted disability rights legislation. Ms. Devandas adds that none of these provincial laws ensures the rights protected by the CRPD.
  • Ms. Devandas criticized the lack of a national policy in Canada to coordinate, guide and monitor the implementation of the CRPD. She issued a reminder that governments at all levels are responsible for putting the convention into action, as provided in Article 4(5).
  • Ms. Devandas notes that while Canada collects fairly detailed census information about people with disabilities living in community settings, demographic data about the half-million people in institutions is inadequate, and information about indigenous disabled people is almost non-existent.  The Special Rapporteur also believes that the information drawn from the Disability Screening Questions isn’t being used to guide the design, implementation and monitoring of disability policies and programs.
  • She remarked that in Canada “discussions about the rights of persons with disabilities are still framed in terms of social assistance, rather than from a human rights-based approach.” The Special Rapporteur adds that the non-discrimination guarantees in the Charter of Rights, and the duty to accommodate recognized in provincial laws “are insufficient to ensure a systemic transformation of society”
  • The Special Rapporteur emphasized that all levels of government must remove from individuals “the burden of initiating lengthy and onerous legal procedures to achieve the recognition and enjoyment of their rights.”
  • Ms. Devandas identified “significant disparities in the areas of accessibility and access to education, health, administration of justice, and social protection” depending on place of residence, and noted that the situation for indigenous people was “particularly worrisome.”
  • The section on independent living bears special mention.
    • The Special Rapporteur is “extremely concerned,”
    • Access to independent living supports “is not considered as a right, but rather as a social assistance programme dependent on the availability of services.”
    • Piecemeal programs and under-funding cause long wait times for services that provide insufficient coverage.
    • People with intellectual and psychosocial disabilities are over-represented among the homeless population.
  • In the section entitled “Right to life” the exact language, and several points, are worth noting.
  • “I am extremely concerned about the implementation of the legislation on medical assistance in dying from a disability perspective. I have been informed that there is no protocol in place to demonstrate that persons with disabilities have been provided with viable alternatives when eligible for assistive dying. I have further received worrisome claims about persons with disabilities in institutions being pressured to seek medical assistance in dying, and practitioners not formally reporting cases involving persons with disabilities. I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care.”  Some points to note about this section:
    • The section is called the “right to life” not the “right to die.”
    • The Special Rapporteur is “extremely concerned.”  She expresses this level of concern only regarding the Right to life and independent living.  It is the highest level on the “scale of concern,” however this section was not highlighted in the press release issued by her office.
    • Ms. Devandas notes that people should be “provided with viable alternatives,” not just informed of the availability of palliative care.
    • She mentions “worrisome claims” of:
      • Institutionalized people being pressured to seek MAiD; and
      • lack of reporting by physicians.
    • Ms. Devandas urges the federal government to:
      • Investigate these complaints; and
      • Put into place adequate safeguards to ensure that people don’t ask for AS/E just because they don’t have community-based alternatives and palliative care.
  • You can email the Special Rapporteur on the Rights of Persons with Disabilities at sr.disability@ohchr.org.

REMEMBERING DENISE KARUTH

  • On Easter Sunday morning, April 21, 2019, nearly four years after a diagnosis of brain cancer, Denise Karuth died peacefully in her own bed, comfortable and pain-free, surrounded by friends and family.
  • Like many of us, Denise Karuth was a disability rights activist by default. Her life-long visual impairment shaped her awareness of barriers in her environment, and her compassionate character made her aware of how discrimination affected other disabled people.  Denise learned more directly about architectural barriers when she developed Multiple Sclerosis in the early 1980s. She unfortunately also learned more about negative attitudes about disability from medical practitioners, social service professionals, and even loved ones, for whom the MS seemed to add an insupportable insult to injury.
  • Denise became involved in the independent living and disability rights movements, helping others with disabilities move from institutions to living in their own homes with personal care attendants, and advocating for accessible public transit.  Denise served as the chair of the Governor’s Commission on Accessible Public Transportation under Michael Dukakis.  To increase her own mobility, she had to advocate with guide dog providers to consider the needs of mobility-impaired users, both in how the dogs were trained (for example, to identify curb cuts and locate ramps to building entrances), and the accessibility of their facilities and programs to people using wheelchairs.
  • Denise was a co-founder and long-time director of the Boston Self-Help Center, which provided a counter-balance to the male-dominated, physical-disability orientation of the Boston Center for Independent Living by providing independent living skills and peer support to people with cognitive, psychiatric, and sensory disabilities, as well as chronic illness and HIV/AIDS.
  • Denise’s personality was both gentle and formidable.  She was incredibly generous, and was the person who always made sure that everyone’s accessibility needs were taken into account.  Her faith was a central and essential part of who she was, but even there, she challenged traditional Christian conceptions of disability. Her ordination as a Minister of the United Church of Christ in 2016 (upon earning a Master’s in divinity from the Episcopal Divinity School in Cambridge, MA) was the culmination of her faith and dedication to the communities of the First Church in Cambridge, as well as the First Church in Northampton.
  • Denise became involved with disability activists opposing the legalization of assisted suicide starting in the mid 1990s, and her passing became a testimony of sorts; she outlived her 16-month prognosis by 32 months, and she showed that it’s not necessary to control the moment of death in order to die with dignity.
  • All these details, of her jobs as administrator or grant-writer, as peer-counselor, activist and ambassador, mentor and minister, barely scratch the surface of who Denise was; a unique gift to each person who knew her.  She was a talented musician and scholar.  She was the embodiment of lovingkindness, a dog fan, and a Trekkie.  Denise was tender and tenacious.  She was wonderfully imperfect, sometimes too soft, almost naïve in her optimism, ready to give away the store. She was luminous and warm and frustrating at times. But most of all, Denise Ann Karuth was beautiful and beloved.
  • For more information about Denise’s life and work, visit http://scua.library.umass.edu/umarmot/karuth-denise/

CORRECTED LINK

  • The link we included in the webcast text of April 12 to the Summary report on end-of-life care in Québec didn’t work; this one should do the trick.  We’re wicked sorry for the error.