The Autistic Self Advocacy Network is profoundly concerned by the recent decision from the United Kingdom allowing Great Ormond Street Hospital in London to kill Nancy Fitzmaurice, a disabled 12-year old, through the withholding of fluids at the request of her mother. The decision constitutes an extremely troubling legal precedent, representing the first time the British legal system has allowed a child breathing on her own, not on life support and not diagnosed with any terminal illness, to be killed by the medical system.
Euthanasia of people with disabilities is an extremely dangerous and wholly inappropriate solution to inadequate pain management. In cases where painkillers are insufficient, a number of alternatives for pain management exist. A policy of euthanasia targets vulnerable people, particularly when it is applied to children. People with disabilities who experience chronic pain should have same access as others to life-sustaining medical treatment.
When parents and physicians have the ability to authorize the killing of disabled children, we see serious abuses. Recently, ASAN and twelve other disability rights groups filed an amicus brief in a case challenging the University of Wisconsin Hospital’s practice of counseling parents to withhold care from children with disabilities for treatable but life-threatening medical conditions. In one such instance, a child with developmental disabilities died after a hospital doctor advised his parents that they could withdraw his feeding tube – which provided fluids and nutrition – based on his supposedly low “quality of life.” The medical condition supposedly justifying this measure was treatable pneumonia. The child died the next day, after administration of morphine. Such actions demonstrate the results of a policy that allows families and clinicians to discriminate on the basis of disability in the application of life-sustaining treatment.
The media coverage surrounding this case has been extraordinarily irresponsible, implying that the child’s disability should justify a decision that her life was unworthy of living. ASAN is concerned that the voices of people with disabilities with similar support needs were not heard in this discussion. Many people with disabilities who utilize feeding tubes or experience other conditions similar to those Nancy Fitzmaurice face live in the community and do not feel that their lives are not worth living. The absence of the voices of people with disabilities who could shed light on the lived experiences of children like Nancy is troubling in the extreme.
We urge advocates and policymakers to stand against legal and legislative decisions enabling the killing or withholding of life-sustaining care from disabled children and adults. As ASAN’s previous work has indicated, people with disabilities continue to face systemic and ongoing discrimination in accessing the medical system. Inaccurate and dangerous assumptions that our lives are not worth living have claimed too many lives. People with disabilities deserve better.