Disability Day of Mourning: The Need to Mourn and Celebrate the Worth of Disabled Lives

by Sophie Trist




Every year on March 1 the Autistic Self-advocacy Network (ASAN) and other disability organizations hold vigils all across the country to call attention to the epidemic of disability filicide across the world. Disability filicide occurs when a disabled person is murdered by a family member or caregiver, often because they are seen as too much of a burden by their family members or because their murder is seen as a “mercy killing.” The Disability Day of Mourning (DDOM) shines a light on these tragedies and also protests the way these murders are treated in the courts and media. The killers of disabled people often receive an outpouring of sympathy from the public — sympathy which is denied to their disabled victims. This sympathy stems from a widespread but demonstrably false belief that people with disabilities have a very low quality of life. This narrative is perpetuated by books and films, like the horrific Me Before You, which romanticizes and glorifies the death of a disabled man and insinuates that our lives are not worth living. These messages do incalculable harm to people with disabilities; when we are killed, our lives are not treated with the same value and consideration as those of nondisabled victims. If a mother murders her nondisabled child, society clamors for justice. If a parent murders a disabled child, on the other hand, public commentary focuses on how hard her life must have been and how the disabled person is now “in a better place.” In essence, the murderers become the victims, and the murder victims are erased.


Since ASAN began keeping track of disability filicide cases in 2014, it has collected the names of thousands of people with disabilities murdered by their relatives or caregivers since 1980. You can view the full database of names and stories on the DDOM website. Teru Inaba was an 83-year-old, bedridden Japanese woman who lived with cognitive disabilities. She was murdered in Tokyo on February 2 by her adult child, who punched her in the head several times and reportedly told police that he was tired of caring for her. On January 11, 87-year-old Joan Marcela Wheeler of Oregon was shot to death by her husband, who claimed that due to her chronic illness Joan was better off dead than alive. In October of 2020, a 14-year-old autistic boy from Nashville named Sayeed Nelson was murdered by his mother and stepbrother, who then tried to pass off his death as an accident. A developmentally disabled man named Derrick Christophe was murdered in my home state of Louisiana on February 17, 2020. He died of internal bleeding after his abusive father beat him with a broom handle. These are just a few examples of the stories, which come from every corner of the world and every socioeconomic class. The victims range in age from infants to elders. In some instances, the Disability Memorial website is able to share more personal details to humanize the victims. For example, Sayeed Nelson of Nashville was a massive Star Wars fan. The names of some of the victims from developing countries are unknown; they are recorded simply as “Five-year-old Girl” or “Unknown Elder.” Nevertheless, this record of their existence, sparse as it may be, does not allow us to forget that they were human beings with infinite, inalienable value. The Disability Day of Mourning is a profound act of disabled resistance to the narratives society tells about the worth of our lives.


Though DDOM focuses exclusively on filicide, euthanasia and physician-assisted suicide are forms of killing which use the medical system to perpetrate violence against people with disabilities. European countries are writing more permissive assisted death laws, allowing euthanasia and assisted suicide for disabled people without a terminal diagnosis. In the Netherlands, only a diagnosis of “Unbearable suffering with no prospect of improvement“ confirmed by two doctors is required, and children as young as twelve can be euthanized with parental consent, which essentially legalizes filicide.


Because doctors hold overwhelmingly negative views about disability, legalized medical killing creates a two-sided healthcare system, where the able-bodied receive suicide prevention and the disabled and mentally ill receive suicide assistance. This is evident in the case of 29-year-old Aurelia Brouwers, euthanized in the Netherlands in 2018 — not because she had a terminal diagnosis, but because she was suffering from chronic mental illness. In 2016, a Wisconsin teenager named Jerika Bowlen held a Last Dance suicide party with over a thousand attendees before ending her life. Jerika had spinal muscular atrophy Type II, and thanks to advances in medicine, people with this disability can now live well into their sixties; Jerika’s diagnosis was nowhere near terminal. If a nondisabled teenager had announced plans to throw a suicide party, she would have been given mental health treatment and encouraged to keep fighting for life, but a disabled teen wishing to end her life is seen by the nondisabled as perfectly understandable, even “courageous.”


A vast majority of disability rights organizations and activists oppose assisted suicide and euthanasia because of the gulf between suicide prevention and suicide assistance, the consistent devaluing of disabled lives in healthcare, and disabled people’s heightened vulnerability to pressure and coercion. The UN’s Office of Human Rights agrees, arguing that disability should never be grounds for ending someone’s life because such policies would “legalize and authorize institutional ableism.” As the Center for Disability Rights points out, elderly and disabled people experience familial and caregiver abuse at astronomical rates, so it is not hard to imagine a person with a disability being coerced by heirs and others into prematurely ending his or her life. Additionally, assisted suicide puts financial concerns ahead of disabled people’s lives. When insurance companies are looking to cut costs however they can, suicide may be pushed as an option instead of costly treatments or palliative care. This played out in the case of Stephanie Packer, whose insurer refused to cover her chemotherapy treatments after California passed its End of Life Options Act. The lives of people with disabilities should never be left to the mercy of abusive caregivers or predatory insurance companies.


At the root of filicide, euthanasia, and all other attacks on the lives and human dignity of people with disabilities is the idea that we are a burden, that we’re better off dead than disabled. In a 2019 study of 112 Canadian patients who chose assisted suicide or euthanasia, over half cited a loss of independence and control as a primary reason for ending their lives. Many disabled people fight tooth-and-nail for legal, economic, medical, and social independence; autonomy is very important to us. However, autonomy and independence do not determine human dignity. Combatting lethal ableism means rejecting the idea that independence is the defining factor of a life worth living. We must also change the conversation about the deaths of people with disabilities. The Autistic Self-advocacy Network provides a comprehensive anti-filicide toolkit, which is an excellent place to start. We must stop making excuses for the murders of disabled people and start calling out dehumanizing systems which push death as a viable cure for disability. Disabled people will not be safe from these forms of aggressive violence until the societal narrative shifts to reflect and acknowledge our full humanity and right to exist just as we are.

Disclaimer: The views presented in the Rehumanize Blog do not necessarily represent the views of all members, contributors, or donors. We exist to present a forum for discussion within the Consistent Life Ethic, to promote discourse and present an opportunity for peer review and dialogue.

All content copyright Life Matters Journal, Inc. 2012-2020 

unless otherwise noted or in bylines.

Rehumanize International is a registered Doing Business As

name of Life Matters Journal, 2017.

 

Rehumanize International 
744 E. Warrington Ave.
@ Work Hard PGH
Pittsburgh, PA 15210

 

info@rehumanizeintl.org

General inquiries: 740-963-9565

Financial/Donation inquiries: 412-450-0749

  • Facebook - Black Circle
  • Twitter - Black Circle
  • Instagram - Black Circle
  • YouTube - Black Circle
  • LinkedIn - Black Circle