Anyone who thinks that the so called ‘right-to-die’ isn’t a loaded gun aimed right at the heads of disabled people simply isn’t paying attention. A cursory perusal on-line of such organizations as Compassion & Choices, Ergo and Final Exit Network yield a plethora of examples.
Compassion & Choices has a long-term disabled man demanding the ‘right to die’ on their home page. His essay states that he is ”a 38-year-old disabled man with a terminal diagnosis of Duchenne Muscular Dystrophy.” From the photograph accompanying the story, he seems to have a power wheelchair and a ventilator. I find it interesting that he calls MD “a terminal diagnosis,” as I have several friends with MD, none of whom consider it terminal. It is, in fact, a long-term disabling condition caused by a genetic anomaly.
In his article “Farewell to Hemlock: Killed by its name,” on the Ergo site, Derek Humphry says that Hemlock was, “fighting for voluntary euthanasia and physician-assisted suicide to be made legal for terminally and hopelessly ill adults.” Disability activists know that ‘hopelessly ill’ means us.
The other major ‘right to die’ organization in the U.S., Final Exit Network, has the following as the first bullet point in their mission statement:
To work toward obtaining the basic human right of competent adults to choose to end their lives on their own terms when they suffer from irreversible physical illness, intractable pain, or a constellation of chronic, progressive physical disabilities.
Which makes it abundantly clear that they mean us.
Thus it is apparent that these major ‘right-to-die’ organizations are really ‘better-dead-than-disabled’ organizations and that the people that they want the right to get rid of certainly include people with long-term physical disabilities – us.
I have to confess at this point that I, too, had not been paying attention to this for some time. I’ve been living in my rural paradise and ignoring, to some extent at least, the fact that these organizations have all come out to blatantly target disabled people. When I was more directly involved in the Jail Jack campaign and other Not Dead Yet activities, the ‘better dead than disabled’ crowd were screening this agenda from the public. Back then they wanted everyone to believe that it was only for those that were imminently dying and we were a lunatic fringe to feel threatened. I remember the furor when Faye Girsh, then President of Hemlock Society, came out with a press release stating that nonvoluntary euthanasia for the mentally incompetent and elderly was part of their agenda. Rather than officially retract the statement, she passed it off (and the national press let her) as ‘unofficial.’ I’m still scratching my head, trying to figure out how a press release on the organization’s letterhead can be ‘unofficial.’ Including non-terminal people with disabilities was controversial then, but my research shows that including us is now accepted within the ‘right-to-die’ lobby. This makes it all the more sinister that they have been changing the law in states like Washington, Vermont and New Mexico and it makes me even more thankful to the dedicated activists from Not Dead Yet and sister organizations that prevented legalization in Massachusetts, Québec and California.
I’ve come back to active status in Not Dead Yet through the issue intruding on my otherwise quiet life. First early last year, a friend told me about another friend of hers who was being systematically starved to death in a nursing home despite being willing and able to feed herself. Apparently a relative that lives far from here had her put in the nursing home following a heart attack to ‘recover,’ then ordered them not to feed her. Despite the fact that she’d never been declared incompetent and made her wishes known loudly and often, the nursing home was following the relative’s instructions. I started preparing for a direct action protest, but also advised my friend that she could and should just get her friend out of there. “Just take her home,” I advised and if the relative or anyone else showed up, let me know and I’d be there with media. Her friend lived at home for several more months and eventually died quietly in her own bed.
A second wake-up call occurred when my husband (who is also a wheelchair user) was in a local hospital for a GI issue and the doctor put a DNR (do not resuscitate) order on him without our knowledge or consent! We found out about it when the anesthesiologist for a procedure told us they would be suspending it for the duration of the procedure. What? I was livid! By the time we got back up to the floor following the procedure, the hospital ombudsman had found the doctor and she and I talked. She claimed that it was a clerical error and that they would not have followed it had he been in crisis because an armband is supposed to accompany the order and he did not have one. I informed the hospital that I would forgo suing them (for now) only if they reviewed the systems that allowed such a ‘clerical’ error to occur and put in safeguards against it happening again. I’m still not sure I believe the ‘clerical error’ story, but medical facilities are limited and I’d not like for my sweetheart to be denied services so I’m letting it pass.
The final straw was a Facebook conversation that I had yesterday with an apparently otherwise savvy disabled woman. She didn’t know what NDY is when I mentioned it, and demanded that I defend the ‘better dead than disabled’ characterization of the ‘right to die’ movement and accused me of ‘beating a drum’ and using her post to do so. However, my research on the ‘better dead than disabled’ movement today has more than justified my statements in that conversation and I definitely stand by them. I, for one, intend to pay attention, starting now. I invite all of my sisters and brothers in the disability rights movement to join me. It’s no exaggeration to say we’re in the fight of our lives. – W. Carol Cleigh