I have lived with an amyotrophic lateral sclerosis (ALS) diagnosis for 20 years now. And in that time, I have seen so much end-of-life suffering among my PALS (people with ALS). Hundreds in my peer group have died horrible deaths from this cruel disease. That’s why I believe that adults – disabled or not – deserve to make their end-of-life decisions free from government interference and government indifference to our suffering.
My advocacy for better health care for those living with ALS has expanded to the national movement to authorize medical aid in dying – that is the ability of a terminally ill, mentally capable adult to request from a physician medication they can take, when and whether they choose, to shorten a dying process if their suffering becomes unbearable.
Living with this disease places me within a large population of people in this country who live with a disability, more than 56 million. So I express gratitude that our nation celebrates the 26th anniversary of the uniquely empowering Americans with Disabilities Act (ADA) today, July 26.
Stories can change hearts and minds
At the same time, I call upon the leaders of major disability organizations, the same people who fought for the autonomy the ADA gives our diverse disability community, to recognize that we want to be empowered in our end-of-life medical options, too. Hearing the stories of those who want – and need – end-of-life autonomy can change hearts and minds.
One of the most poignant examples of why we need better options is the case of an acquaintance of mine, an educated man with ALS who did not want to die the suffocating, paralyzing death people who have ALS are destined to die. Fearing that fate, he tried to end his life three times. Ultimately, he was transferred from his assisted living facility to a secure institution so he can be closely monitored while death slowly encroaches. This, to me, is a heartbreaking end to a life well lived.
Lawmakers in dozens of states, including Minnesota, have considered aid-in-dying laws in the past two years. Most recently, on June 9, California became the fifth state to authorize the practice, joining Montana, Oregon, Vermont and Washington. I testified in support of Minnesota’s Compassionate Care Act, which is modeled on a law in Oregon that has an 18-year record of safe practice. For failing to act to make a humane option available can have severe consequences, as my acquaintance’s experience shows.
Aid-in-dying laws have safeguards
To those who would label the option I seek “assisted suicide,” I urge you to open your mind to the view that it is not. Medical aid in dying applies to people who want more than anything to live, but a deadly disease is ending their lives. And some responsible people want to make a responsible decision with the aid of their physician to reduce their suffering as they leave this world. The safeguards in aid-in-dying laws ensure that only those who qualify can access the medication and that vulnerable people are protected.
I know too many PALS who have suffered an excruciating death at the hands of ALS. Literally, I have known hundreds in the course of my decades of work advocating for the ALS community. For them, and for the thousands I will never know, and, possibly, for myself I advocate for Minnesota’s Compassionate Care Act. It is good law, and good policy, and I urge all Minnesotans to join me in campaigning for better end-of-life options.
Bobbi Jacobsen lives in Richfield.
WANT TO ADD YOUR VOICE?
If you’re interested in joining the discussion, add your voice to the Comment section below — or consider writing a letter or a longer-form Community Voices commentary. (For more information about Community Voices, email Susan Albright at firstname.lastname@example.org.)