Rebecca Hopper: ADA protects me in life, but what about in death?
Advanced care planning is especially important for those with disabilities.
Thirty years ago, I was a new mother working full time with only a vague awareness of the Americans with Disabilities Act (ADA) which was signed into law by President George H.W. Bush on July 26, 1990. Little did I know how much that landmark legislation would mean to me.
By 1995, while still working full time, my daughter had been diagnosed with autism spectrum disorder (known then as Asperger syndrome) and I was coping with a progressive retinal disease that would lead to my current status as legally blind. In the years following those diagnoses, I became fully aware of the benefits I’ve received thanks to the ADA. Benefits that have allowed me and my children to live active, independent lives.
For example, the ADA’s “reasonable accommodations” requirement has provided me with access to low-vision communication devices and training, a service dog named Jazz to help me navigate my community, and social support for my daughter, who lives independently and has a modest source of income. I don’t want to suggest, however, that all of this has come easily. I still sometimes have to fight for my rights to be respected, as when someone tries to prohibit me from shopping in a grocery store with Jazz at my side.
When it comes to health care, I have few complaints. The physicians, nurses, therapists and social workers I’ve encountered throughout my many life stages have been nothing but supportive. I’ve never been denied care or received inferior care because I lack full sight.
Like most baby boomers, I am now entering the stage of life where I’m thinking more about death. The COVID-19 pandemic has caused me, my aging family members and friends to think about what the end of life will look like. None of us want to die in isolation in an ICU. We want our wishes to be respected, so that we can die peacefully at home and avoid a protracted death.
Advanced care planning is especially important for those of us living with disabilities because we live in a culture that still regards us as dependent, even helpless. Identifying who will speak for us when we can no longer speak for ourselves – someone who knows our values and will advocate for our wishes – is a critical first step.
But, when my end-of-life approaches, if I am still capable of making my own decisions, I also want to know that medical aid in dying is an option for me. Already legal in nine states and Washington, D.C., medical aid in dying allows terminally ill adults the option of a prescription medication they can ingest for a peaceful death.
A dear friend who battled pancreatic cancer shot himself in his backyard because he no longer wanted to suffer through a prolonged death with little quality of life. He had no safe, legal alternative. I don’t want that for me. When medical aid in dying for terminally ill adults becomes legal in Minnesota, people living with disabilities must have equal access.
The ADA recognized that people living with disabilities have the same rights as everyone else and made discrimination against us unacceptable. I am grateful for the ADA and hope it will protect my autonomy at the end of my life as well.
Rebecca Hopper is a former small business owner. She lives in St. Louis Park.