The community of people with disabilities has considered the “End of Life Options Act” otherwise known as physician and nurse-prescribed suicide. We have thoroughly studied and vetted the effect of prescribing suicide on our community. The National Council on Disability is, “An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families”.
The Council on Disability came out with a report on October 9 about the dangers of assisted suicide laws for people with disabilities. The council clearly opposes medical assisted suicide in this extensive report. There are many national disability rights groups that oppose prescribing suicide including but not limited to ADAPT, American Association of People with Disabilities, Autistic Self Advocacy Network, Disability Rights Education & Defense Fund, National Council on Independent Living, TASH and Arc of the United States.
My 25-year-old son Kylen and I also testified at the recent Minnesota hearing on prescribed suicide. Kylen has quadriplegic cerebral palsy, profound cognitive disabilities, intractable epilepsy, chronic pain, and multiple other medical disabilities. I have been a registered nurse for 20 years. I have been a disability rights activist for 25 years. I am vehemently opposed to doctor and nurse-prescribed suicide.
The End of Life Options Act was based on “Death with Dignity” in Oregon. These are the top five reasons people ask their doctors to help them commit suicide: loss of autonomy, being unable to participate in activities that make life enjoyable, loss of dignity, loss of bodily functions and becoming a burden on family and friends and caregivers. The statistics kept for more than 20 years proves fear of pain or inadequate pain control is not mentioned in the top five reasons.
The top five rationale are descriptions of my son and other Minnesotans with disabilities. Able-bodied people cannot tolerate the prospect of becoming a person with a disability and developing dependencies on another person. They are so appalled at the loss of “dignity” this dependency brings that suicide is preferable to disability. It goes like this, “I would rather die right now by a prescription for suicide than to lose all dignity and turn into one of those people with disabilities for six months or less.” Doctor and nurse-prescribed suicide for these rationale supports the doctrine of better off dead than disabled. The assisted suicide bills devalue the life of my son and his peers.
We must continue to advocate for reliable and competent care in the community. We must continue to advocate for full inclusion of people with disabilities. We must continue to lobby our elected officials for allocating the money needed to help provide for and empower people with disabilities. The assisted suicide legislation is the antithesis to the ADA, Olmstead vs L.C. & E.W., integration, inclusion, community living and Minnesota’s very own Olmstead Plan. People with disabilities do not have equal rights, equal access, equal respect, or the caregiver support that they need.
Minnesota has a staffing crisis for people that require personal care attendants or 1:1 physical care. How can we allow people prescription suicide because they feel like a burden during a clear and dangerous staffing crisis. The Assisted Suicide laws are a judgement on the quality of life of my son and all people with disabilities.
I would encourage people with disabilities to read the National Council’s report to Congress. Please watch a movie called Fatal Flaws and listen as Professor William Peace PhD describes his encounter with doctors in the hospital as a man with physical disabilities. I would ask you to go to NotDeadYet.org and read the articles there. I would also encourage people to watch The Long Goodbye, The Kara Tippetts Story. Let’s provide high quality care and support to people across the continuum of their lives.
There are no safeguards against social and medical bigotry toward a person with significant disabilities. Doctors and Nurses openly declare that people like my son Kylen have no quality of life. They want to know during a dental procedure if Kylen is DNR/DNI, yet they don’t ask me that about my able-bodied, National Honor Society, basketball playing 18-year-old son. People find it amusing to say that they are going to tattoo DNR/ DNI on their chests, so they don’t have to ever end up like Kylen and his peers. I agree with the National Council on Disability, “… the council does not believe that added safeguards, modified safeguards, or indeed safeguards of any kind, will remove the inherent dangers in assisted suicide laws. Also, such a message can be readily confused with the idea that legalized assisted suicide is acceptable as long as its rules are stronger, which is not true. On the contrary, the basic dangers of legalizing assisted suicide are inherent and cannot be eradicated.”
The National Council on Disability goes on to recommend that, “Congress should pass a resolution to express the sense of the Congress that assisted suicide puts everyone, particularly people with disabilities at risk of deadly harm.” I want to thank Access Press for allowing my opinion to be shared with its readers. I wonder if Compassion and Choices would allow my opinion piece to be shared with their readers to persuade their membership of the dangers their advocacy presents to my son and Minnesotans with disabilities.
Ware is an RN, PHN and disability rights activist from South St. Paul.
