Monday, February 2, 2015

The final choice should be yours

Why People Living With Disabilities Support Death With Dignity 
By Dustin Hankinson and Sara Myers 

"If you have a terminal illness, and are in great pain, I think you should have the right to end your life...It is discrimination against the disabled to deny them the right...that able-bodied people have."

Those are the words of famed physicist, best-selling author and U.S Presidential Medal of Freedom winner Stephen Hawking last July in an interview he did with BBC-TV. Hawking has a motor neuron disease related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. 

He is almost entirely paralyzed and communicates through a speech-generating device. As two individuals who also live with significant physical disabilities (ALS and Duchenne muscular dystrophy), we could not agree with him more.


Hawking spoke in support of an assisted-dying bill in the United Kingdom modeled after Oregon's time-tested 17-year-old Death With Dignity Act that Brittany Maynard (pronounced "Ma-NARD") recently utilized to end her suffering. Like Oregon's law, the U.K. bill would authorize terminally ill, mentally competent adults to request aid-in-dying medication that they can take to end their suffering if it becomes unbearable.

A report published in the Journal of Medical Ethics about the Oregon Death With Dignity Act concluded: "Rates of assisted dying in Oregon showed no evidence of heightened risk for...the physically disabled or chronically ill." Historically, one-third to one-half of Oregonians who obtain the medication never take it because their suffering does not become unbearable.

Since Oregon's law went into effect in 1997, four other U.S. states have allowed the medical practice of aid in dying: Washington, Montana, Vermont and New Mexico. 

We are volunteers for the nation's leading end-of-life choice organization, Compassion & Choices, a non-profit group working to expand the list of death-with-dignity states to include California, Colorado, Connecticut, Massachusetts, and New Jersey, and many others thanks to Brittany Maynard.

Last July, we commemorated the anniversary of the 1990 Americans with Disabilities Act with a video explaining why we support increased autonomy and expanded options for all people at the end of life, including aid in dying. We invite people who watch the video to sign a petition on the Compassion & Choices website to show their support.

As people with disabilities who support death with dignity, we are by no means alone. Recent state polls show a strong majority of voters living with disabilities support death with dignity in Connecticut (65 percent), Massachusetts (74 percent) and New Jersey (63 percent), support levels nearly identical to all voters in these three states (Connecticut: 66 percent; Massachusetts: 71 percent; New Jersey: 62 percent).

Like others, we want the freedom to enjoy life. This freedom should include the full range of options at the end of life, including hospice, palliative care and aid in dying. Stephen Hawking summarized it well: "We should not take away the freedom of the individual to choose to die," he concluded in his BBC-TV interview. "I believe one should have control of ones life, including its ending."

As California and other states consider whether to adopt death-with-dignity laws to honor Brittany Maynard, we hope they recognize that most people living with disabilities share Stephen Hawking's viewpoint: they strongly support aid in dying.

Myers resides in New York City and Kent, Connecticut, where she passionately advocates for death-with-dignity legislation. Hankinson lives in Missoula, Montana, where he has worked tirelessly to preserve access to death with dignity.


Interviews with Myers and Hankinson were featured in Brittany Maynard's "call to action" video to expand death with dignity nationwide that was released on Nov. 19. A different version of this oped was published last July by The Missoulian.