On January 12, last Monday, the Executive Director of the National Council on Independent Living emailed me that he would not be able to attend a gathering of a new coalition to oppose assisted suicide bills to be held on Jan. 21st at the offices of the Family Research Council. The announcement said that disability advocates were involved, so naturally he figured that included Not Dead Yet. It was complete news to me and I did not receive an invitation. But later that day, I learned that Second Thoughts Director John Kelly, who is also NDY’s New England Regional Director in Boston, received one, as did Marilyn Golden of the Disability Rights Education & Defense Fund in California.
John, Marilyn and I do work in coalition with other groups on the assisted suicide issue, mainly by participating in conference calls to share useful information with groups that we tend to disagree with on other issues. I’m stating that mildly. We’ve had a lot of practice, them and us, leaving our disagreements at the door. We agree that legalizing assisted suicide is extremely dangerous public policy for old, ill and disabled people, including the general public in ways people often don’t recognize.
But this invitation from the Family Research Council (FRC) is different. There was no advance contact with the most active disability groups on the issue. In contrast, new coalitions were already forming in Maryland, Pennsylvania and Colorado, but those groups came together through careful outreach, preparation and mutually agreed ground rules. Face to face meetings, if any, should be held in a neutral setting such as a hotel. None of this happened with FRC, yet our disability rights colleagues who received this invitation would have no way of knowing that.
DREDF and NDY decided that we needed to communicate our concerns to those we knew who had received an invitation:
We have heard from a few folks in the disability community who have received the invitation below from the Family Research Council (FRC). FRC did not engage in any preliminary planning with NDY or DREDF, nor even notify us of this effort. Sending the message from FRC and holding the proposed meeting at FRC’s offices indicates a serious failure to recognize how it undermines the real coalitions that already exist or are forming, and threatens to paint opposition to assisted suicide laws as connected with the other policy positions that FRC is known for. We hope that disability advocates will not RSVP and will instead put energy into the genuine broad-based coalitions that are working to oppose assisted suicide bills in the states where they are being introduced. We would be glad to help you connect with them.
I received a grateful response from the head of a national disability rights organization, stating that FRC was “a bridge too far” for them. Then on Friday evening, Jan. 16, I received a forward and query from that same leader, asking if John Kelly was speaking at this gathering? John was listed in the agenda that had been sent out that evening to invitees:
2:10-2:30 Disability Rights and the Case Against Assisted Suicide- John Kelly (TBD-Skype) (Second Thoughts MA and New England Regional Director, Not Dead Yet)
An asterisk appeared beside the names of seven confirmed speakers, and there was no asterisk by John’s name or one other listed speaker. Later Friday evening, John received a call from one of the confirmed speakers, inviting him to speak at the gathering via Skype. Needless to say, John declined, and notified the individual who sent the invitations to remove his name from the agenda and send out the correction.
FRC’s behavior is a good example of bad coalition work. It’s so bad on so many levels that I felt the need to share this information publicly with other disability rights advocates who may have received an invitation from FRC. I also want to be clear with other groups that oppose legalization of assisted suicide that perhaps the best way to initiate communication and coordination with the disability rights community to help form a coalition in your state is to contact NDY or DREDF and let us help initiate those connections.
BTW, one reason that I’m particularly concerned about FRC’s approach is the false message that Compassion and Choices (C&C) is giving the media about their opposition. It’s been a few years since reporters have seriously questioned the existence of disability rights opposition to legalizing assisted suicide. Every major national disability group that has taken a position on assisted suicide opposes these laws due to the dangers of mistake, coercion and abuse. But C&C is out there claiming that their only real opposition comes from the religious right, and promoting opinion pieces from two disabled individuals who agree with them. One reporter even pressed upon one of NDY’s LGBT Board members that she must be a closet conservative. Enough already.
Disability organizations, like policy makers, have a duty to consider the risks that proposed laws pose to everyone, not just a few. Collectively, disability rights advocates have first hand experience with medical mistakes, medical devaluation of our lives, daily violation of our existing legal rights, social stigma and oppression, crushing financial pressures, and abuse at two to four times the rate of non-disabled peers. All of these mean that we cannot sit by silently while assisted suicide bills are falsely marketed as a progressive social cause. We’re willing to work with medical, palliative care, hospice, religious and pro-life organizations in broad coalition to defeat these bills, but coalition presumes equity, good faith and an ability for all members to keep their eyes on the prize. Sadly, we don’t see that in FRC.
Diane, I agree with you completely. Assisted suicide IS NOT a progressive issue. That premise is patently absurd. As we know, under Nazi fascism, the first to be murdered by the state were disabled people (including many children), and the elderly. Also, eugenicists, in this country, also advocated, in writing no less, the killing of children and others with mental or physical disabilities. I actually read the work of psychiatrists who were disgusted that the parents of disabled children would visit them since they viewed them as worthless. These doctors were not progressive.
I think you are right to be alarmed about the false message that is being sent by The Family Research Council about Assisted Suicide Laws. To suggest that the opposition is composed of only religious institutions on the basis of faith is truly damaging to the larger disability rights community who fight for equal rights to health care for the disabled, the elderly, the poor, and the mentally ill who depend upon the public safety nets of Medicare/Medicaid to attain their potential for life, liberty and pursuit of happiness under secular law formed under The Constitution of the United States.
You know, of course, that there are dangerous times ahead for the most vulnerable populations because of the quiet, almost covert, transistioning of Medicare/Medicaid from “fee for service” to “managed care” and “managed death” reimbursement protocols in the scenario of a Health Maintenance Organization. that will continue to ensure the private profits of Big Insurance. .
Obviously, the FRC is either ignorant of the great danger these physician assisted suicide laws present to vulnerable populations who depend on the public safety nets of Medicare and Medicaid OR they have another agenda?
Can the Disability Community do anything about disclosing or revealing this quiet and under-the-radar transitioning of Medicare/Medicaid to a for-profit big HMO who uses value based buying of Health Care to ensure and retain the profits of Big Insurance who realikze great private profits from the people’s public puirse?
Can the Disability Community do anything about disclosing the LACK of WARNING and NOTICE in the OFFICIAL Government Medicare/Medicaid Handbook that is mailed out to all Medicare/Medicaid patients of record about the 27 Adverse Hospital Events, The Pay for Performance Violations, the Exceeding of the Diagnosis Related Group Caps that are NOT NOW reimbursed under Medicare Part A or Advantage Part C Hospital Insurance.
Diane, I may be misreading your message, but the only thing FRC seems to have done wrong here was to omit NDY from its invitation list. This seems like it could be a mistake connected to FRC’s lack of familiarity with the issue and with who its most important players are. Did you check to find out whether FRC’s failure to invite you was an accidental? I would wonder whether a conservative organization that is a novice player would immediately recognize the profound importance of an organization with NDY’s spirited name.
A follow up thought is that maybe it would be better teamwork to ask other members of the coalition to remind FRC that their invitation list was incomplete and that FRC should invite NDY to speak, too, rather than to isolate FRC from a potential team. FRC may hold positions with which NDY does not agree, but refusing to work with them on those grounds seems to take the focus away from PAS/SSS (State Sponsored Suicide) and divide a potentially powerful alliance because of unrelated political differences. The pro-suicide media would LOVE that to happen, and when they accuse DR activists of being “closet conservatives,” I think this infighting is what they hope will arise. Whatever we think of FRC, they may influence the opinions of 30-50% of voters. If they are currently on the right side of the issue and opposed to PAS/SSS, friendly interaction with NDY could help them to stay there.
It does not surprise me that FRC is not doing coalition work well but it does make me curious to ask if there are any groups whose primary focus is not based on disability advocacy that NDY is comfortable with. The protection of the vulnerable is common ground between groups that are more socially conservative and advocates for the disabled. I think the notion that assisted suicide makes many groups vulnerable to undertreatment supports both the agenda of NDY as well as other groups (e.g. NRL) and individuals (e.g. Wesley Smith) that focus on the ethical problems of assisted suicide. Does NDY perceive this the same way?