John Kelly (Not Dead Yet and Second Thoughts Massachusetts) argues regularly that all people who use Medical Aid in Dying (MAID) laws are disabled, and, therefore, those laws authorize the state to get involved “by approving of the person’s reasons for wanting to die, and giving the doctor immunity by prescribing this.”
In a recent discussion with Kelly, Thaddeus Pope seemed to echo the idea that all MAID participants are, indeed, disabled: “[E]verybody who’s using medical aid in dying is disabled. And probably you could go to the next step and say the reason they want medical aid in dying is because of their disability … . I guess the key thing is, fthat’s their judgment, right? Some people would say, ‘I find this condition intolerable.’ Other people won’t.”
But there are more ways to look at disability and MAID laws than through the technical definition of disability.
The idea suggested by Kelly and other disability rights advocates, that most of us will be disabled in one way or another by the time we reach the end of our lives, has been borne out in my experience. Virtually everyone I have known who has died has satisfied, hours, days, weeks, months, or years before their deaths, the definition of disability under the Americans with Disabilities Act (ADA): “a physical or mental impairment that substantially limits one or more major life activities of such individual [including] caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.”
Looked at definitionally, I have been disabled, at least to a limited (though increasing) extent most of my life. However, I did not consider myself disabled until my knees became so painful that I could not walk without discomfort. After having both knees replaced with artificial joints, I gave away to Goodwill about fifteen pairs of various kinds of knee supports that I had used over the years to make walking less painful and even possible.
I don’t suggest that my increasing levels of disability since the age of twenty are comparable to those of someone who does not have the use of their limbs or is incontinent. There are many levels of disability. I have been able to adjust to mine over the years, just as John Kelly has adjusted to his much more severe disabilities. I see him as an important example of someone who did not let severe disability deprive him of finding meaning and purpose in living. Others, however, make different decisions for themselves.
But our discussions, if they are to be productive, cannot devolve into considering some who are profoundly disabled more credible than others whose disabilities are less severe. We should all be able to decide for ourselves when we can no longer tolerate a certain level of disability.
Stephen Hawking, with advanced support for his progressive physical disabilities from an unusual form of ALS that began in his 20s, was able to contribute significantly to his fields of theoretical physics and cosmology for 50 years before his death at age 76. People with severe disabilities like Hawking’s require a level of assistance that should be readily available to anyone in a civilized world.
Unfortunately, this world is not as civilized as it should be, especially in the US. I join John Kelly and others who assert that far more resources should be applied to provide the assistance needed by those whose disabilities keep them from enjoying and participating in society to the extent they wish to.
But Kelly believes that MAID laws devalue those with disabilities. My experience suggests that this is not necessarily true and may not be true to any significant extent. In the five or so years after being diagnosed with Alzheimer’s, my father decided that it was acceptable to him to go gently into that abyss, knowing that he would eventually not recognize people, not be able to continue most of the pursuits that he enjoyed throughout the nine decades of his life, and would require assistance with all the activities of daily living.
Three years before he died, he had to have a suprapubic catheter surgically implanted so that his bladder could be emptied. A large urine collection bag made it possible for him to sleep through the night. During the day, a leg bag was emptied frequently, as needed, so that he could sit at a table for activities and spend some time in a wheel chair (because of damaged hips that no longer supported walking), where he could be wheeled outside and move around slowly, sometimes on his own. It was his choice to live to the end of his disease, which lasted fifteen years, in spite of how disabled he would become. It is my choice not to do so should I develop dementia.
I agree with Kelly that ending one’s life before its natural end because some people believe “better dead than disabled” is outrageous. No one should encourage a person by word, deed, or attitude, to take their own life. But to prevent disabled people from having that choice is the essence of ableism–discrimination in favor of able-bodied people and against the disabled.
MAID and the training Final Exit Network (FEN) provides offer many who are dying or debilitated, including the disabled, choices that they would not otherwise have in spite of that right being implicit in our laws.
As FEN board member Gary Wederspahn has suggested, “[P]eople with disabilities (lifelong or at end-of-life) have the same rights as everyone. This includes the right to a peaceful, humane death on their own terms. To deny them this right, on any grounds or justification, is totally wrong-headed and unjust.”
