Early Press & Testimony Opposing Mass. END of . . . Life-Options Bill

John Kelly is on almost total doctor-ordered bed rest, which made for an especially compelling TV interview in advance of today’s press conference and committee testimony on the Massachusetts assisted suicide bill. Here are the links to both Boston Channel 25 news stories featuring John as an opponent of the bill:

Bill to help terminally-ill patients end life to be debated on Beacon Hill 

Public to weigh in on right-to-die legislation for terminally ill

This morning’s press conference was well attended, and NDY’s Anita Cameron posted a photo of the speakers on Facebook:

Nine people lined up to speak at press conference with podium in the center displaying name Massachusetts Alliance Against Doctor Prescribed Suicide.

Next: The Hearing. At least seven disability rights advocates were prepared to testify on one of two panels. The following are links to three of those testimonies with short excerpts from each.

John Kelly’s Testimony

Like most progressives, I strongly oppose capital punishment. We simply can’t stomach the fact that at least 4% of people sentenced to die are not guilty. We know that when there is a mistake, there’s no remedy.

H.1926 would in effect sentence to death non-dying people. Doctors misdiagnose all the time, and it’s estimated that 12 to-15% of people will outlive their six-month terminal diagnosis. . . .

And when more than half of suicide deaths in Oregon last year were reported to feel like a burden on others, we can see evidence of bullying, shame, and loss of options. When you read the title of the bill with different emphasis, it doesn’t mean options for the end-of-life but “the end [pause] of life-options.”

Ruthie Poole’s Testimony

Those of us in M-POWER know that depression is insidious in how it affects thinking. Against the new provision, we know that depression does impair judgment. As a therapist once told me, depression does not cause black and white thinking; it causes black and blacker thinking. Absolute hopelessness and seeing no way out are common feelings for those of us who have experienced severe depression. Personally, as someone who has been suicidal in the past, I can relate to the desire for “a painless and easy way out.” However, depression is treatable and reversible. Suicide is not.

We applaud the Joint Committee on Public Health and other members of the Legislature who have worked hard to expand funding for suicide prevention efforts. Passing this bill would be a slap in the face of those efforts. Suicide contagion is real. Any assisted suicide program will send the message to people in mental distress – old, young, physically ill or not – that suicide is a reasonable answer to life’s problems.

Anita Cameron’s Testimony

Although assisted suicide requests in Oregon (which this bill and others are modeled on) are lower among Blacks and people of color, that doesn’t mean that this won’t change in more diverse areas, especially as healthcare support lessens and assisted suicide becomes more acceptable due to the efforts of groups like Compassion and Choices. . . .

Further, doctors often make mistakes about whether a person is terminal or not. In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. My mother wanted to go home to Colorado to die, so the arrangements were made. A funny thing happened, though. Once she got there, her health began to improve!  Ten years later, she is still alive, lives in her own home in the community and is reasonably active.

John Kelly & Anita Cameron Begin A Busy Week Opposing Mass. Assisted Suicide Bill

Tuesday, June 25 begins a busy week for disability advocates opposed to legalization of assisted suicide. The Massachusetts “End of Life Options Act” H.1926/S.1208 will be heard before the Joint Committee On Public Health. John Kelly, NDY’s New England Regional Director, and Anita Cameron, Director of Minority Outreach, are among several disability leaders planning to testify.

Details of three events at which disability advocates’ voices will be heard are listed below. Please support them by attending, submitting testimony, commenting on press coverage and otherwise adding your voices.

1. PRESS CONFERENCE from 9:30 AM-10:15 AM on Tuesday, June 25, before the hearing at the:

The University of Massachusetts Club
1 Beacon St., 32nd floor, Presidential Parlor Room
Boston, MA 02108

Speakers include Not Dead Yet Director Of Minority Outreach, Anita Cameron, Peer Specialist and M-POWER Board President, Ruthie Poole, palliative care physician Laura Petrillo, and John Kelly, Dir. of Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide. Please come show your support.

From there, it is a  3 minute walk to go to the committee hearing, up the hill to the front of the state house at the Hooker entrance, for ambulatory people, and a 4 minute walk to the accessible entrance on Bowdoin Street.

2. COMMITTEE HEARING on H 1926, “The End Of Life Options Act,” is at 11 AM on Tuesday, June 25, in the Gardner Auditorium at the Statehouse. The capitol police can show you how to get there.

Doors to the auditorium will open at 10 AM.

There will be an overflow space in Nurses Hall on the 2nd floor. There may be a limit on how many wheelchairs at a time can fit into the Gardner. Oral testimony is limited to 3 minutes. There will be a sign up sheet at the Gardner Auditorium entrance. Written testimony can be longer, and should be sent to john.mahoney@mahouse.gov.

3. LEGISLATIVE BRIEFING on Thursday, June 27, 2 days after the hearing, in the House Members Lounge on the 3rd floor of the state house. It will run from 11 AM-12:30 PM.

Speakers are Rep. Denise Provost (D-Somerville), Anita Cameron , peer Specialist Brian Shea of M-POWER, Dr. Laura Petrillo, and John Kelly,

The most important event to come to is of course the hearing. There will be stickers for our side showing “no Assisted Suicide.”

Not Dead Yet Condemns Maine Governor’s Signing of Assisted Suicide Bill

Not Dead Yet, the Resistance

Contacts:
Mike Reynolds 207-576-7396 (no voicemail; uppitycrip@gmail.com)
John Kelly 617-952-3302 (jkelly@notdeadyet.org)

Not Dead Yet Condemns Maine Governor’s Signing of Assisted Suicide Bill

(Augusta, ME) Long time Not Dead Yet disability activist Mike Reynolds condemned today’s signing of “An Act To Enact the Maine Death with Dignity Act” by Governor Janet Mills. “This is a terrible day in the history of Maine that will lead to the untimely deaths of disabled people due to inevitable mistakes, coercion and abuse.”

Reynolds had been scheduled to speak to the Governor’s staff today at 1:00 p.m. along with two others, but learned shortly beforehand that the call was cancelled. Reynolds had penned a recent op-ed in the Bangor Daily News on the issue. He had planned to report on yesterday’s decision by the American Medical Association to maintain it’s longstanding opposition to these bills. He would also have made the following points, which are all too rarely considered by policy makers.

1. When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Will insurers do the right thing, or the cheap thing? Examples already exist where this is legal.

2. Elder abuse, and abuse of people with disabilities, are a rising problem. One in ten elders are abused, usually by close family. Where assisted suicide is legal, an heir or abusive caregiver can suggest or steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug — no independent witnesses are required at the death, so who would know?

3. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. And many people with chronic conditions and disabilities can become “terminal” simply by refusing or being denied coverage for essential medications or treatments like insulin or dialysis. This bill is not limited to the imminently dying.

4. The “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. And the legal immunities in the bill just require a claim of good faith compliance, not actual compliance, protecting everyone involved in the death except the patient.

5. Although assisted suicide proponents will say that it’s not about disability, the top 5 reported reasons for assisted suicide requests in Oregon throughout the years since legalization are all disability issues: “loss of autonomy” (90.6%), “less able to engage in activities” (89.1%), “loss of dignity” (74.4%), “losing control of bodily functions” (44.3%), and “burden on others” (44.8%). These are issues that many people face, not only those of us commonly considered disabled, but also seniors, people with chronic conditions, and people with advanced illnesses, including terminal illnesses. These reasons demonstrate that virtually all who die by lethal prescriptions in Oregon are disabled, in that they need assistance from another person for daily activities. Consumer directed home care would go a long way in actually helping people and families.

6. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. For example, a CDC report reveals that from 1999-2010, suicide among those aged 35-64 increased 49% in Oregon, where assisted suicide has been legal the longest, as compared to a 28% increase nationally.

An Open Letter to Maine Governor Mills: Veto Assisted Suicide Law LD 1313

VETO LD 1313, An Act “To Enact the Maine Death with Dignity Act”

Dear Governor Mills:

The disability community appeals to you to veto LD 1313, which would legalize a public policy of assisted suicide.

Many people are unaware of the fact that every major national disability organization that has taken a position on assisted suicide laws opposes them. These include over a dozen prominent groups, many of which have undersigned this urgent appeal:

  • ADAPT
  • American Association of People with Disabilities
  • Assn of Programs for Rural Independent Living
  • Autistic Self Advocacy Network
  • Disability Rights Education and Defense Fund
  • National Council on Disability
  • National Council on Independent Living
  • National Organization of Nurses with Disabilities
  • National Spinal Cord Injury Association
  • Not Dead Yet
  • TASH
  • The Arc of the United States
  • United Spinal Association

Our reasons for opposing assisted suicide laws are many. Most of them are illustrated by these documented examples of significant problems which occurred in states that have courted the danger of a law based on Oregon’s “death with dignity” Act. These examples are available at https://dredf.org/wp-content/uploads/2015/04/Revised-OR-WA-Abuses.pdf.

When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Bitter experiences has shown that insurers are denying expensive life-sustaining treatment but offering lethal drugs instead.

Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for a “yes,” regardless of their actual legal eligibility. The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no disinterested witness is required at the death, so who would know?

Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. For example, a CDC report reveals that from 1999-2010, suicide among those aged 35-64 increased 49% in Oregon, where assisted suicide has been legal the longest, as compared to a 28% increase nationally.

Finally, although assisted suicide proponents will say that it’s not about disability, the top 5 reported reasons for assisted suicide requests in Oregon throughout the years since legalization are all disability issues: “loss of autonomy” (90.6%), “less able to engage in activities” (89.1%), “loss of dignity” (74.4%), “losing control of bodily functions” (44.3%), and “burden on others” (44.8%). (The same reports show that every year except the first, some of those who died by lethal prescription were not terminal within six months.)

These are issues that many people face, not only those of us commonly considered disabled, but also seniors, people with chronic conditions, and people with advanced illnesses, including terminal illnesses. These reasons demonstrate that virtually all who die by lethal prescriptions in Oregon are disabled, in that they need assistance from another person for daily activities.

As people who have fought for the civil rights and equal protection of all people with disabilities, we in the undersigned organizations understand that our society is permeated with negative stereotypes about disability. Award winning movies deliver the message that it’s “better to be dead than disabled.” We understand the shame people are taught to feel if they become disabled, the pressure to hide that we need help, the guilt for “inconveniencing” others.

There are ways to address the reasons people have for requesting assisted suicide, but it starts with a societal commitment to treat all suicides as a tragedy, to respond to anyone’s expression of suicidal feelings with an equal level of support, affirmation of the value of their life and effort to address their concerns. A two-tiered system where most people get suicide prevention but certain people get suicide assistance is a deadly form of discrimination that should not be accepted. Assisted suicide laws exacerbate the disability stigma that prevails in our culture and undermine people’s genuine autonomy by establishing a medically administered program of suicide approval and assistance in a health care environment already riddled with pressures to cut costs of care.

Assisted suicide is bad medicine for Maine. We hope that this information is helpful in your consideration of this life and death public policy issue, and would welcome the opportunity to communicate about this further.

Sincerely,

Diane Coleman, JD, MBA
President/CEO
Not Dead Yet
497 State Street
Rochester, NY 14608
708-420-0539 C
www.notdeadyet.org

ON BEHALF OF:

ADAPT
American Association of People with Disabilities
Association of Programs for Rural Independent Living
Disability Rights Education & Defense Fund
National Council on Independent Living
Not Dead Yet
TASH: Equity, Opportunity, and Inclusion for People with Disabilities Since 1975
United Spinal Association
United States International Council on Disabilities

Stephanie Woodward Will Represent NDY and ADAPT at Albany Press Conference

Contact:
Matille Thebolt: mthebolt@CRCPublicRelations.com
or
Emily Degnan: edegnan@crcpublicrelations.com
703-683-5004

***Media Advisory***

Patient and Disability Rights Advocates Hold Press Conference to

Warn of the Dangers of Assisted Suicide

What:                      Patient and disability rights advocates will hold a news conference to warn of the dangers of legalized assisted suicide in their state. Assembly Bill A2694 and Senate Bill S3947 are currently in their respective Health Committees.

Who:                        Kristen Hanson, Patients Rights Action Fund
Meghan Parker, New York Association on Independent Living
Stephanie Woodward, ADAPT and Not Dead Yet
Kathryn Carroll, Center for Disability Rights
Clifton Perez, Independent Living Center of the Hudson Valley
(see bios below)

When:                     Wednesday, May 29th at 2:00pm ET

Where:                    Legislative Office Building, Room 130, 198 State St, Albany, NY 12210

Bios of Speakers:

Kristen Hanson is the Community Relations Advocate at the Patients Rights Action Fund. She is the widow of JJ Hanson who passed away from glioblastoma multiform. JJ was a staunch opponent to assisted suicide as he battled his illness. Kristen now continues JJ’s work speaking out against the dangers and abuses of assisted suicide.

Meghan Parker is the Director of Advocacy for the New York Association on Independent Living (NYAIL). NYAIL is a statewide membership organization created by and composed of Independent Living Centers across New York State. Independent Living Centers are unique disability-led, cross-disability, locally administered not-for-profit organizations, providing advocacy and supports to assist people with disabilities of all ages to live independently and fully integrated in their communities. In her role as Director of Advocacy, Parker coordinates the Statewide Systems Advocacy Network, which advocates for the full inclusion and civil rights of people with disabilities in New York State. Prior to her work at NYAIL, Parker was the Deputy Director of Westchester Disabled On the Move, a Yonkers-based Independent Living Center. She began her career working in constituent services for her local Congresswoman, Nita Lowey. Parker is blind and has spent her professional life advocating for the civil rights of people with disabilities.

Woman with long reddish blond hair and serious expression seated in wheelchair with hot pink trim and wearing hot pink Not Dead Yet and jeans with hands folded in her lap.

Stephanie Woodward is the Director of Advocacy at the Center for Disability Rights (CDR). Stephanie attended Syracuse University College of Law where she earned her J.D. with a certificate in Disability Law and Policy and her M.S.Ed. in Disability Studies. Prior to her work at CDR, Stephanie worked as a litigator in Miami, Florida focusing on Disability Rights law. Stephanie is a proud disabled person and member of ADAPT, a national grass-roots community that organizes to assure the civil and human rights of people with disabilities to live in freedom. Stephanie has been arrested multiple times while advocating for Disability Rights. While Stephanie’s work spans across all areas of Disability Rights, she is particularly interested in deinstitutionalization, community living, ending violence against people with disabilities, and improving access in the community.

Kathryn Carroll is a disability rights advocate and is Manager of Government Affairs for the Center for Disability Rights. The Center for Disability Rights is a disability-led not-for-profit organization which advocates for the civil rights, independence, and community integration of disabled people. Kathryn handles policy matters which range from advocating for adequate healthcare services and supports, access to complex rehabilitation technology, increasing accessible affordable housing and transportation and more. She is an attorney and is committed to bringing about inclusion and acceptance of disabled people in the community. She is a member of Capital Region ADAPT.

Clifton (Cliff) Perez of Troy, New York has been working in the field of advocacy to enhance and defend the rights of people with disabilities since 1985. He holds a Master’s Degree in social work from the University of Stony Brook NY, and currently serves as the Systems Advocate for the Independent Living Center of the Hudson Valley. In 2018, he was nominated and was inducted to the first established NYSILC NYS Disability Rights Hall of Fame. In the same year he was nominated and selected as an HVCC Outstanding Alumni Award winner.

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