Meet our New Regional Director, John Kelly


John Kelly
John Kelly

[Editor’s Note:  John Kelly officially began working for NDY as a Regional Director on September 23.  We issued a press announcement on that occasion, but here’s a chance to get to know John better.]

Hello everyone, I want to introduce myself to the far-flung faithful readers of this blog and all the supporters of Not Dead Yet and our mission to halt the deadly discrimination of legalized assisted suicide and euthanasia. My role as Regional Director will be to assist Diane and represent Not Dead Yet throughout the region, such as recently in New Jersey where we are strategizing against an assisted suicide bill.

Getting to work for Not Dead Yet and Diane Coleman is a dream come true. I had the pleasure of working closely with Diane during the campaign in Massachusetts last year against Question 2, the “Death with Dignity” referendum. It was Diane and Stephen Drake’s years of work that laid the foundation for the efforts of our Massachusetts group, Second Thoughts. They boosted us early in our campaign with a Wall Street Journal op-ed with “Second Thoughts” in the title. Not Dead Yet supported us with finances and advice, as we tailored a winning message for the progressive voters of Massachusetts. Our victory in November 2012 was unexpected and especially sweet, given that legalization proponents were already counting their legalization chickens in other states.

I’ve been a disabled person since the age of 25, when I became a quadriplegic from a spinal cord injury. I am a “high quad,” or as some would say, “paralyzed from the neck down,” the dramatic way of saying the accurate “paralyzed below the shoulders.” I have the same amount of physical function as the suicidal characters in the movies “Act of Love,” “Whose Life Is It Anyway?” and the Spanish movie “The Sea Inside.” (The only time I get to see someone like me on the screen is when they want to die, or raise money for the cure.)

I got exposed to Not Dead Yet issues through the writings of the great disability scholar Paul Longmore, who wrote about Elizabeth Bouvia and Larry McAfee, so-called “right to die” cases in the 1980s to early 1990s. I saw myself in those stories, how the courts and the media took for granted that anyone with severe disabilities would want to die, deeming rational the desperate responses to impossibly oppressive circumstances (Bouvia had a miscarriage and marriage break-up, and was thrown out of school and denied services, while McAfee was warehoused in out-of-state nursing homes). Then Not Dead Yet articulated my rage at this prevailing willingness to have us die, at the same time we have to fight for the tiniest service, the most basic accommodation. And like many disabled people, I feel personally vulnerable to the common belief of “better dead than disabled.” (My father thought it would’ve been better if I had simply died in my accident.)

My first Not Dead Yet action was in Cambridge, Massachusetts, to protest an institute affiliated with Harvard giving Jack Kevorkian a “humanitarian” award. I was hooked, because Not Dead Yet understands the first rule of protesting, which is to have fun. Elaine Kolb came up from Connecticut and we sang songs and tried to infiltrate the award banquet. Then I joined the national action in my hometown of Boston in 2000, when the World Federation of Right to Die Societies held a convention. We protested all day in the rain (our classic chant: “We’re here, We’re wet, We’re Not Dead Yet!”). The Boston Globe published my piece on our clash with the death promoters.

In the 1990s, I went to graduate school at Brandeis in order to study with one of the founders of Disability Studies, Irving Zola. I loved studying and learning, but realized that I preferred a life of activism to academia. My research led to a couple of articles in the Ragged Edge, on how fear of incontinence helps fuel the assisted suicide movement,  and an exploration of “inspiration.”

The op-ed’s we submitted during the 2012 Massachusetts campaign were group-written, even though they sometimes bore my name. Here is our op-ed that appeared in the Providence Journal just before the election.:

I am active in Boston on disability issues, especially streetscape accessibility and the horrors of brick sidewalks. I’ve always known, however, that the most important battle going on is the one being fought by Not Dead Yet. I would find myself thinking, as I was measuring whether a change of level was greater than ¼”, that inches and degrees are nothing compared to the right to be secure in our own continued existence.

I look forward to working with and learning from Diane and Stephen and all the other activists and thinkers among us. My experience is mostly fighting the legalization of assisted suicide, so I have some catching up to do on other issues facing our community, like organ donation and POLST. I think our continued success lies in working together across disability with all our present and potential allies, such as the Autistic Self Advocacy Network (ASAN), the mental health recovery community, and the developmental disability community.

And I have a cat, Boris. 🙂

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