Commentary: Assisted suicide legislation endangers those with disabilities

I live in Newark with my husband Joe. We have five sons and one daughter. Our 32-year-old daughter has cerebral palsy. She does not walk, talk or stand without the support of equipment. My husband and I bathe her, dress her, feed her and love her each day. We love her as much as our other five children. And her life is a life worth living.

I have been an advocate for and with my daughter for the last 32 years. Every year when assisted suicide legislation comes up for debate, my daughter and I come to Dover to testify. She sits through the testimony of others saying that they want to die or their relative wants to die because they could no longer talk, walk, eat, bathe or get dressed without assistance. It hurts me to hear this and I know it hurts my daughter. And yes, without us supporting her in the community, or without life-saving medicines, she would probably die within six months. Supporters of assisted suicide always focus on the “indignity” of needing help to eat, move or take medications. This legislation sends a clear and callous message that my daughter’s life is not worth living.

In Oregon, which passed nearly identical legislation about 20 years ago, the latest data from 2017 indicate that most patients who died from assisted suicide had disability-related concerns. In fact, only 21% cited concerns about pain control. Compare that to 87.4% cited losing autonomy. Some 88.1% cited fear of being less able to engage in activities making life enjoyable, and 67.1% cited loss of dignity. Some 37.1% cited losing control of bodily functions and 55% were concerned about being a burden on family or caregivers.

This fear of living with disabilities reinforces the stigma, isolation and depression that people with disabilities, including disabilities related to illness, face every day. It also worsens the problem of medical discrimination, abuse and coercion that people living with disabilities are more vulnerable to than others.

Claims that this legislation limits its scope to people who have a terminal illness is not reassuring either. It is important to note that doctors typically cannot make six-month prognoses with any acceptable level of certainty. The disability community is full of people who have outlived “six-month” prognoses by decades.

Proponents also say that assisted suicide should be a choice for patients who have tried everything else. In reality, having access to “everything” is a luxury of a few. We must address health care inequities in Delaware and beyond before we even consider legalizing assisted suicide. When the people of Delaware are offered the option of suicide without access to affordable home care, they do not have any meaningful choice.

People with significant disabilities due to illness should not have to die in order to have dignity. Instead, they need access to the things that help them make the most of their remaining time: quality palliative care, respectful in-home supports, counseling and assistive technology to maximize autonomy. Let’s focus on aid in living, not “aid in dying.”

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