Dawn Lentz lives with her husband, John Stevenson, in Townsend.
I’m a Delawarean living with a disability. I suffer from a neurological disease called spinocerebellar ataxia type 2. Ataxia is one of the most horrible diseases that most people have never heard of. It causes progressive problems with coordination, balance, speech, swallowing and eye movement. I am the administrator for several ataxia support groups.
In the final stage of my disease, I will be unable to breathe properly. Most people with my condition die of aspiration pneumonia. That’s how my mother, uncle and grandmother died. Without medical advancements, I know that’s going to happen to me. It’s not a crapshoot whether I die a horrendous death. I have seen it. I know what the end will be like.
For years now, I’ve been testifying before the Delaware General Assembly, pleading with lawmakers to pass “The Ron Silverio/Heather Block End of Life Options Law” (House Bill 140), which would allow terminally ill adults like me the option of medical aid in dying to gently end intolerable suffering. Some disability rights advocates oppose this compassionate legislation. They have every right to speak for themselves.
But I’m disabled, and I don’t need anyone speaking for me. Why should a self-appointed group have the right to say what I can do or what any other person with a disability can do? It’s ludicrous. I’m irritated that people claim to represent me when they don’t. Nor do they represent many of us who live with disabilities: Seventy-nine percent of Americans who say they live with a disability support medical aid in dying, according to a February national poll.
Unfortunately, some lawmakers erroneously fear political risk if they were to vote for this time-tested legislation. The reality is that they’re more likely to win the gratitude of voters: Seventy-two percent of voters support passing medical aid-in-dying legislation, according to a 2020 survey by GBAO. Only 20% oppose it. In addition, 74% of Delaware physicians surveyed support passing medical-aid-in-dying legislation, according to a 2022 NüPOINT survey. The Medical Society of Delaware passed a resolution of “engaged neutrality” regarding medical aid in dying to “protect its members’ freedom to discuss end-of-life options in the context of the doctor-patient relationship.”
My husband loves me. But if I’m suffering intolerably at the end of my life, he supports me having the option of medical aid in dying. He knows that medical aid in dying is about bodily autonomy. He knows that medical aid in dying allows me control over my own medical care. And he knows that I don’t want to lose that control to a group of people who don’t know me or my situation.
The small percentage of disabled people who oppose the End of Life Options Law never say the word “terminal,” just the word “disabled,” implying that being disabled makes you eligible to use the law. That’s dishonest. An individual seeking to use the End of Life Options Law must be terminal, not merely disabled, and two health care providers must confirm the individual has six months or less to live.
Contrary to claims from some in the disability community, rates of medical aid in dying in Oregon, the first state in the nation to allow this end-of-life care option, starting in 1997, “showed no evidence of heightened risk for the elderly, women, the uninsured ..., people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations,” according to a Journal of Medical Ethics’ report.
The truth is, only a fraction of a percent of those who die in Delaware in any single year will ever use medical aid in dying, should it become law. Experience in 10 states and Washington, D.C., which all allow this option, proves that. If you read the language of HB 140, there are so many safeguards, including making it a crime to coerce anyone to use this option. The law can only help people like me. And, if it helps one person avoid unbearable suffering at the end of life, that makes it worth it.
Delaware lawmakers have debated this medical aid-in-dying bill for seven years, since its introduction in 2017. Many have died without the option. As a Delawarean living with a disability, I want that option. In honor of Ron Silverio and Heather Block, I urge lawmakers to pass HB 140 in 2024. It’s the best way to prevent more Delawareans from experiencing needless suffering at the end of life.
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