I cannot count the number of times I\u2019ve been told by people that I must have overcome so much in order to drive a minivan. I have been told that my presence in a public swimming pool is impressive, even though I swim at half the speed of everyone else. A school-trip organizer once wondered in hushed tones whether it would be okay to give me a trophy for attending. After all, it certainly couldn\u2019t have been easy for me.<\/p>\n
When people see a wheelchair user like me, they evidently assume my disability must be so hard to survive, so painful, and so isolating that even just venturing beyond my front door is an achievement worthy of recognition.<\/p>\n
No wonder they think it is compassionate to give us the option to end our lives. Surely, they would like to have this option too in the nightmarish event they ever become disabled. But what is really worth recognizing is that able-bodied fears, rather than disabled realities, are distorting public thinking about \u201cassisted dying.\u201d\u00a0<\/p>\n
Take the example of the advocacy<\/a> of Dr. Jeremy Boal, former Chief Clinical Officer of the Mount Sinai Health System. When he was diagnosed with ALS, what<\/a> filled him with dread was not death itself but the prospect of life with a disability. He worked with New York\u2019s recent campaign that led to the legalization of medical aid in dying (MAiD).<\/p>\n Boal did not write from a position of unbearable physical pain. He continues to live in his home with his wife, participate in community life, exercise, and meditate. Nor are decline and death foreign concepts for him: He described his experience caring for many patients with terminal illnesses.<\/p>\n Nonetheless, his present suffering is palpable. He wrote in a recent column that his diagnosis transported him from \u201cthe intellectual awareness of death\u201d to \u201cthe emotional reality of facing it.\u201d He couldn\u2019t help but think of unbearable suffering as what lay ahead. He thought of people who were \u201cmentally intact but imprisoned in their own bodies, unable to move, swallow, speak, or breathe.\u201d He recalled \u201cthe look of desperation in their eyes when they could no longer communicate.\u201d He had \u201ca vision of my own death: I would be choking on my own saliva, gasping for air, unable to communicate my needs, my eyes filling with panic, as my family and friends looked on helplessly.\u201d<\/p>\n This vision of the future, and not his current physical symptoms, terrified Boal. He attributes the return of his peace to a realization: In contrast with the horror of descent into the depths of disability, \u201cI will have the privilege of creating the exact conditions I want for my own death,\u201d maintaining \u201cthe freedom to determine my own fate.\u201d<\/p>\n As someone who has always lived with a disability, it strikes me that the anticipation of disability can inspire more dread than the prospect of death. One reason these fears are so powerful is that people consistently underestimate the human capacity for adaptation. What seems unimaginable before it happens often becomes manageable once it does.<\/p>\n \u201cPeople consistently underestimate the human capacity for adaptation.\u201d\u00a0<\/p>\n I have no idea what it is like to imagine losing the ability to walk because I\u2019ve never stood up. For me, using a wheelchair is simply ordinary life. I need to find ways to stay physically healthy that cannot include a treadmill or even a walk in the park, and every night for eighteen years, my legs and one hand were strapped into hard plastic splints to maintain my range of mobility. Through my disability communities, I know people who rely on ventilators to breathe, robotic arms to eat, and picture boards to communicate.\u00a0<\/p>\n People look at these lives and imagine what it would feel like to lose mobility, speech, or independence, and assume that the life that follows must be unbearable. But disabled people frequently report lives that are meaningful and fulfilling, even as they encounter difficulties to which others are not accustomed. Still, policy debates often treat the able-bodied imagination of disability as more authoritative than the experiences of those who have adapted to it.<\/p>\n Though acquiring a progressive disability is undoubtedly a different experience from being born with a non-degenerative one, such as mine, there is a real distance between anticipated terrors and lived realities. It is certainly hard for me to think of what losing the abilities I am accustomed to having would be like. But these possibilities are not so overwhelming as to cause the \u201coverwhelming sense of dread and near-total panic\u201d described by Boal, nor to make me think I would prefer a lethal injection delivered at needlepoint. Nevertheless, it might take time for me to adapt to a new reality, and it\u2019s during this period that people with and without disabilities are most at risk from the cultural assumption that death is preferable to disability.<\/p>\n \u201cThere is a real distance between anticipated terrors and lived realities.\u201d<\/p>\n Boal is not the only one who conceives of extreme disability as \u201cbeing imprisoned in a body that had died around me.\u201d A large majority<\/a> of expectant parents obtain an abortion following a prenatal Down syndrome diagnosis, surely in part out of a misguided sense of compassion\u2014even though peer-reviewed research has found<\/a> that an astronomical 99 percent of people with Down syndrome \u201cindicated that they were happy with their lives.\u201d Medical administrators and even some laws use<\/a> \u201cquality adjusted life years\u201d (QALYs) to devalue the lives of disabled people in making health care decisions.\u00a0<\/p>\n