I’m a Montanan living with a disability. And I strongly support end-of-life choice. To me, the right to die with dignity is as important as the right to live with dignity.
That’s why I agreed to be interviewed by Compassion & Choices for this video. It’s just three-and-a half minutes long, yet speaks volumes about respecting the rights of people with disabilities to make our own end-of-life decisions, just as other Americans can do in five states and counting.
At three-years-old, I was diagnosed with a genetic disease called Duchenne muscular dystrophy. In 2004 my diaphragm became too weak for me to breathe on my own and I began using a ventilator. At some point in the years ahead, my cardiac (heart) muscles will become too weak to support my body. When that happens, I believe I should be the one who decides my ultimate fate.
That’s why I will celebrate the upcoming anniversary of the 1990 Americans with Disabilities Act (ADA), and will do so as a fervent supporter of Compassion & Choices. So should you!
This Saturday, July 26, marks 24 years since this landmark law guaranteed me and every American with a disability the right to live autonomously and independently.
Its impact is a lot bigger than the wheelchair ramps that now make it so easy for me and others to maneuver on streets and board buses. It integrates us into the fabric of life and living that most people can take for granted.
Just as the ADA preserves our dignity, so do laws that guarantee end-of-life choice in New Mexico, Oregon, Vermont, Washington and my beloved home state of Montana.
I firmly believe the end-of-life choice movement is one of the latest civil and human rights struggles in our country.
My passionate belief in this liberty is why, when opponents of Montanans’ right to make their own end-of-life decisions tried to stir up false fears, I spoke out forcefully and publicly.
The rhetoric from some people in the disability community was especially vitriolic, so it was important for me to show they weren’t speaking for all Americans with disabilities. In doing that, I had Compassion & Choices’ support all the way. (No organization has done more to advanced end-of-life choice in Montana than C&C.)
When I talked to Montana legislators, I focused on the simple belief that my body is sacred, and it’s my fundamental right to decide what happens to me when my life is drawing to an end.
But I don’t see aid in dying merely as it pertains to me. Every mentally stable, terminally ill adult deserves the right to choose how they leave this life — to be surrounded by those they love, with peace and dignity — just as we all have a right to full participation in society, regardless of our physical abilities.
Polls show that most Americans, living with disabilities or not, agree.
We can honor patient choice and protect vulnerable citizens; the two values aren’t mutually exclusive. Wisdom must be our guide; compassion, our goal.
Thank you for your support and engagement. It matters.
Disability Rights Activist
P.S. 24 years ago, lots of people said crazy things about the Americans with Disabilities Act — as if wheelchair ramps and equal access were a threat — and not a gift. The debate over end-of-life choice is no less contentious and tainted by misinformation. That’s why people like me, and you, must make our voices heard. Thanks for being part of this great movement.