By Lois Rogers | Correspondent
There’s a perception among secular pundits that the objections to New Jersey’s assisted suicide bill – now titled “Aid in Dying for the Terminally Ill” – come mainly from religious quarters.
Without question, the Catholic bishops of New Jersey and leaders of other faith-based groups, spurred by their religious belief in the sanctity of human life, have voiced strenuous objection to the bill that has advanced in the New Jersey Legislature. But many groups, including those who don’t embrace any particular faith’s doctrine, have been just as active in the effort to inform the public about the risks and potential unforeseen consequences of assisted suicide.
Prominent among groups who stand in opposition where ever such bills have cropped up over the years is Not Dead Yet, a national, secular grassroots disability rights group, which is now focused on the New Jersey bill.
John B. Kelly, a regional director for Not Dead Yet in the New England states, takes this particular fight a little more personally than most. The New Jersey born and raised disability rights advocate, himself, profoundly disabled, has provided some of the most compelling arguments against it.
In testimony before the N.J. State Assembly and by way of op-ed commentaries and letters, Kelly, who grew up in Middletown, has stressed that despite amendments to the package to make it more passable or a change to what he calls a “prettier” name – from the “Death with Dignity Act” to “Aid in Dying for the Terminally Ill” – to make it more palatable, the bill remains a danger to many segments of society.
Outspoken in his opposition to such legislation, over the years, in his own eloquent words, in testimony, letters and articles, Kelly has done his best to convey his abiding concern that such bills pose a serious threat to scores of individuals with depression, the frail elderly, and those whose suffering could be relieved by palliative care.
Deacon Patrick R. Brannigan, executive director and spokesperson on public policy matters for the New Jersey Catholic Conference, embraces the shared mission between the Church and secular groups like Not Dead Yet. At a recent talk on assisted suicide given in St. Rose Parish, Belmar, he handed out a list of 39 progressive and disability rights organizations that are committed in their opposition to legalization of assisted suicide.
He urged everyone in the room to take heart from the participation of these organizations and to make the involvement of these groups known when they reach out to others in the community at large on the dangers posed by the legislation.
Deacon Brannigan, a strong advocate for palliative care, acknowledged Not Dead Yet, and called Kelly not only passionate about the issue of assisted suicide but “knowledgeable about the ways we can help people live through end of life difficulties with great dignity and comfort.”
Through Kelly’s Eyes
As Kelly sees it, when such bills are passed, no matter how well intentioned, no matter how many assurances that interests of the most vulnerable among us are safeguarded, the personal autonomy they promise to deliver for each individual is, in his words, “ineradicably compromised.”
It’s no secret that Kelly, 56, comes to the conversation with the critical eye of someone who is disabled: he became a quadriplegic from a spinal chord injury sustained in an accident at age 26.
Early in a telephone interview from his Massachusetts home, Kelly described his condition. “I’m a high quad,” which means paralyzed from the neck down, he said.
Kelly, whose parents still live in Middletown, has fond memories of growing up playing on Little League baseball and Pop Warner football teams as a kid. He relates rather proudly that he graduated first in the last “unified” class of Middletown High School and went on to Yale. He enjoys connecting on Facebook with some of his high school classmates.
Kelly, who writes by way of speaking into a microphone that goes into special software, explained that he has “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.’
With the help of caregivers, he has lived on his own for 30 years. Unlike the characters that have appeared on screen, “the fact that I’m dependent on others doesn’t come with a sense of burden or loss of dignity,” that looms so prominently, along with pain, in the assisted suicide debate, he said.
In a profile he wrote in 2013 when he was appointed to regional director of Not Dead Yet in New England, he shared his considerable activities and achievements over the years. They include graduate school in Brandeis University where he studied with Irving Zola, one of the founders of disability studies; his involvement on disability issues in Boston, “especially streetscape accessibility,” his participation in a successful campaign to defeat an assisted suicide campaign in Massachusetts.
He decries the fact that so much of today’s argument for assisted suicide focuses on personal autonomy when the lack of it can be mitigated with a good support team as it has for him. He expressed concerns about those who may consider assisted suicide because they “see themselves as burdens because they can’t afford the equipment or whatever they might need to live independently,” for instance those with conditions such as ALS – amyotrophic lateral sclerosis – who “may be influenced by people who see them as burdens.”
He noted instances where those with neurological diseases who have opted for increased support including ventilators as their bodies fail. “Some are alive 20 plus years after diagnosis,” he said.
Not Just Faith Alone
Kelly, who is not Catholic but joined the Church briefly in his early ‘30s, emphasized that Not Dead Yet comes from a purely secular standpoint on the issues it supports.
“We’re a secular group. We operate from a secular perspective,” he said, noting that the organization focuses on a range of discriminatory issues with stances that are apt to take observers by surprise.
For instance, he confounded assisted suicide proponents in Massachusetts during the campaign there for assisted suicide by simultaneously supporting a ballot question to legalize medical marijuana.
He decries the fact that the mainstream media and the assisted suicide proponents ignore the existence of disability rights advocates when it comes to this issue.
“The mainstream media is comfortable with denying our existence,” focusing instead on faith-based opposition to a movement fueled by Compassion & Choices, the successor to the Hemlock Society, he said.
“(They are) recreating culture wars that make it easy to dismiss the opposition.”
“What we’ve been happy about in New Jersey is that many faith based folks in our broad coalition have been using the arguments we promote,” – drawing attention to the possibility of elder abuse and cost cutting” of funding programs, for instance.
“It’s a fine line of mutual respect that goes on,” he said. “We have to be clear where we’re coming from especially when proponents try to deny our existence and (say) the only opposition is coming from religious people.”