New Jersey Senate Committee Shuts Out Disability Rights Community from Assisted Suicide Hearing

On the website of the New Jersey coalition opposing the state’s assisted suicide bill, more than half of the New Jersey state groups listed are disability groups.  Specifically, they are centers for independent living run by people with disabilities, and the statewide independent living council mandated by federal law to plan the state’s independent living services for people with disabilities of all ages.

Nevertheless, in a move that has outraged both national and state disability rights advocates, the New Jersey Senate Health, Human Services and Senior Citizens Committee last week announced that there will be a hearing on the assisted suicide bill (S 382), with witnesses by invitation only and no disability witness invited.

The New Jersey Alliance Against Doctor-Prescribed Suicide is issuing a press release expressing outrage at this exclusion of the voice of disability rights advocates, as follows:

The uninvited have, however, submitted written testimony, some of which John Kelly has posted on bluejersey.com.  One of these is very strongly worded testimony by the former executive director of the NJ Council on Developmental Disabilities, Ethan Ellis.  Here’s an excerpt:

I’m now  81 years old and I’ve come out of retirement to speak out against this well-meaning but murderous piece of legislation – at my age, I’ve earned the right to speak candidly and I will.

This bill is a matter of dollars and cents, not sense. Behind the scenes, it’s major supporters are those who will benefit financially from ending the lives of people rendered helpless by needless pain, rather than allowing us to live out our natural lives with dignity by paying for the palliative care that will relieve that pain. They’re easy to identify: health insurance companies, hospitals and, in some states, those officials who control or influence their budgets.

If you doubt it, look behind the experience they often cite as successful in Oregon. After the bill on which S 382 is based passed there with the sub rosa support of state officials, those same state officials removed the strongest, most effective painkillers from the list of drugs eligible for CMS reimbursement, encouraging those in unbearable pain to kill themselves because otherwise reliable relief was beyond their reach.

Mr. Ellis’ full testimony is online here.

Another New Jersey advocate to submit written testimony is Norman Smith, Board President of the Progressive Center for Independent Living, also representing two other organizations, Resources for Independent Living and Alliance Center for Independence.  Among other things, he wrote about disturbing personal encounters with emergency room doctors that are all too familiar to many of us (myself included):

A personal story that may explain my fear: I have had the unfortunate experience of dealing with doctors in emergency rooms. Often I can see the look in their eyes: their cold look of indifference as they deal with my medical situation and my Cerebral Palsy. My life has no value to them because they see my disability first. “Better off dead than like that” is in their eyes.

But then I can see their attitude change as they learn that I’m married, that I have a six-year old son, and that I have a job with responsibilities. They discover that I have a life that they put value on.

Mr. Smith’s full testimony is here.

Meanwhile, John Kelly has been coordinating with disability community advocates from national and out-of-state organizations who are adding their weight to the urgent message that the NJ Senate committee must hear from the group most negatively impacted by assisted suicide legislation, people with disabilities.  Their testimonies have been posted online:

• Cassie Cramer, Geriatric Social Worker
• John Kelly, New England Regional Director, Not Dead Yet
• Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund
• Stephen Mendelsohn, Organizer, Second Thoughts Connecticut
• Ruthie Poole, President, MPOWER Massachusetts
• Diane Coleman, President/CEO, Not Dead Yet 
• Amy Hasbrouck, Toujours-Vivant/Not Dead Yet Canada 
• W. Carol Cleigh, former Not Dead Yet Board Chair
• Denise Karuth, disability rights advocate
• Cathy Ludlum, Organizer, Second Thoughts Connecticut
• Meghan Schrader
• Karen Schneiderman, Boston Center for Independent Living

The Committee is not expected to vote tomorrow, but whatever develops, we’ll try to keep you up to date.

All of our readers should be alert to the possibility of assisted suicide legislation in each of our home states.  Assisted suicide proponents are hoping to capitalize on the media storm that arose around the tragedy of Brittany Maynard’s death.  We will need to remind legislators that the people they need to be thinking about are the countless thousands of old, ill and disabled people whose lives are too often dismissed as worth-less.  We cannot let them forget who this is really about, and whose lives are at stake.