I was honored this week to be interviewed by Joyce Bender, President and CEO of Bender Consulting Services and an internationally respected leader in the field of disability employment. Her bio reflects some highlights of her extensive work:
Joyce Bender has built her career on over 30 years of executive search experience, and has become an internationally recognized leader in disability employment, since founding Bender Consulting Services, Inc. in 1995.
Joyce began her career in 1979 as a search consultant, and in 1988, founded Bender and Associates International, Inc., an executive search firm specializing in technology and management search. In 1985, Joyce had a life-threatening accident due to epilepsy that caused a cerebral hemorrhage that required subsequent brain surgery. This accident left Joyce with a 60 percent hearing loss in one ear and a realization that she had epilepsy. As a result of her personal experience, she developed a passion for helping people with disabilities secure employment. Joyce has received numerous recognitions and been featured in various publications and broadcasts. Those highlights can be found in the media section of this site. Joyce is also the host of “Disability Matters with Joyce Bender,” a weekly internet talk radio show on voiceamerica.com.
Here is Joyce’s Disability Matters broadcast information for the segment, including the archived interview as well as accessibility options:
Joyce welcomes Diane Coleman, the president and founder of Not Dead Yet. This organization, is a national disability rights group, that gives a voice opposing assisted suicide and euthanasia. Diane will discuss the mission of this organization in depth, as well as her leadership and policies in place now. She is a well-known writer and speaker on assisted suicide and euthanasia.
Proponents of assisted suicide repeatedly spread falsehoods to promote their lethal and ableist agenda. The February 8 op-ed, “Aid in dying is not assisted suicide” is no exception.
Suicide is defined as the act of taking one’s life intentionally. The person who intentionally ingests a prescribed lethal overdose more closely fits the dictionary definition of suicide than the despondent person who jumps off a bridge. The desire for suicide is a cry for help, even when redefined as a “medical treatment option.”
The Connecticut State Suicide Prevention Plan 2025 posits a clear intersection between assisted suicide and other suicide. Connecticut has the only state suicide prevention plan that includes disabled people as a high-risk population. To quote the relevant section (pp. 57-58):
Discussions about assisted suicide for those with terminal illness intersect in important ways with suicide prevention. The active disability community in Connecticut has been vocal on the need for suicide prevention services for people with disabilities… [William] Peace writes that “Many assume that disability is a fate worse than death. So we admire people with a disability who want to die, and we shake our collective heads in confusion when they want to live.”
Connecticut’s suicide prevention plan makes a number of important recommendations, including “Do not assume suicide is a ‘rational’ response to disability or chronic illness.”
In addition to attempting to redefine suicide, the assisted suicide lobby promotes other falsehoods.
They claim that their legislation is only for people in “deep and dire pain,” yet nothing in HB 6425 requires those seeking lethal overdoses to be in pain. Pain or the fear of it has never been in the top five reasons people give for seeking assisted suicide, according to Oregon’s annual reports. The overwhelming reasons people ask for assisted suicide involve not wanting to live the way disabled people do.
Proponents claim that there have been no abuses in states that have legalized assisted suicide, when the Disability Rights Education and Defense Fund has documented a list of abuses and complications, including cases of prolonged and agonizing deaths. Moreover, as the Oregon Department of Health and Human Services stated: “We are not given the resources to investigate [assisted suicide cases] and not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves.” The only reason more abuses have not been documented is that assisted suicide laws are designed to conceal them.
Advocates claim to be about patient choice, yet there have been instances when insurance companies would pay for assisted suicide but not curative care. A Connecticut state senator and leading assisted suicide proponent authored an op-ed proposing a separate bill that would “require the completion of advanced directives in order to sign up for Medicare, Medicaid or private health insurance.” He spoke of his proposal as a way of getting people to forgo curative care, thereby reducing healthcare costs.
Finally, proponents demand legislation that mandates the falsification of death certificates. HB 6425 requires the underlying terminal illness be listed as the cause of death. If Connecticut follows the lead of Oregon and Washington, this will forbid any mention of the lethal overdose. Connecticut’s Division of Criminal Justice has twice submitted testimony in opposition to death certificate falsification, stating:
Section 9(b) effectively mandates the falsification of death certificates under certain circumstances. It states: “The person signing the qualified patient’s death certificate shall list the underlying terminal illness as the cause of death.” This is simply not the case; the actual cause of death would be the medication taken by or given to the patient… The practical problem for the criminal justice system and the courts will be confronting a potential Murder prosecution where the cause of death is not accurately reported on the death certificate.
Legislators and the public should not be fooled by a privileged lobby that seeks to sell suicide as a solution to their own disability-phobia. We should follow the recommendations of the National Council on Disability’s report, The Danger of Assisted Suicide Laws, and reject codifying lethal and systemic disability discrimination into law.
Head and shoulders photo of Cathy Ludlum, a woman in mid 50s with glasses and wheelchair headrest.
Second Thoughts CT leader Cathy Ludlum on opposing assisted suicide: “there is no safeguard that can counter the social stigma of needing help with intimate care.”
By John B. Kelly
On January 14, Second Thoughts CT leader Cathy Ludlum joined WPLR host John Voket on his show “For the People” to explain why legalized assisted suicide is simply too dangerous to implement. The full transcript is here.
In the 15-minute segment (beginning at 37:20), Cathy meets Voket where he is, and agrees that on its surface, many people would think it’s “a good idea to put the choice of when and how one dies into the hands of the individual.”
But when you start presenting people with other things to think about, a lot of times people may support the theory, but then the implementation worries them and they cannot support it as they had in the past. In other words, talking to one of us or all of us often gives them “second thoughts.” So that’s where the name of our group came from and we’ve been active and mobilized since 2013, as I said.
Cathy pulls the conversation from a narrow focus on individual autonomy to the realities of a society prejudiced against disabled people, who “already have challenges whenever we go to the hospital or we try to get healthcare.”
What those of us in the disability community are trying to get across is, there is no safeguard that can counter the social stigma of needing help with intimate care, of having to rely on others for support, or of seeing your caregivers tired and wondering if the world would be better off without you.
Indeed, Oregon doctors reported that in 2019 “feeling like a burden” motivated more than half of the patients who were prescribed a lethal overdose. Cathy doesn’t get into the details, but the other top four “end-of-life concerns” also relate to psychological distress about the disabling aspects of serious illness, not physical pain as proponents insist.
There is also no possible safeguard to prevent coercion:
with no independent person there at the time of death, how can we ever know that it was the individual’s choice instead of a person who has been threatened or coerced or feels that they have no other choice than to end their own life?
Whenever disabled people point out the dangers of assisted suicide, journalists and legislators routinely ask, as Voket does, whether “legislation can be crafted to carve out the disability community that is so significantly concerned.”
Cathy patiently explains that the legislation “changes the way healthcare is structured” by codifying in law a medical practice that produces death as a beneficial outcome. “And so it changes the doctor-patient relationship. It changes the way insurance and financial reimbursement and such work.”
If some people are understood in state law and medical practice to be literally “better off dead” than alive, “it involves changing the whole way we look at life and death.” I would add that legalized assisted suicide logically leads to doctors and people in a patient’s orbit recommending, persuading, and instigating that death. We have the examples of Kathryn Judson, who overheard her husband’s doctor telling him that he should commit suicide to spare her the trouble of caring for him, or Kate Cheney’s family that was intent on her death.
There is no way to protect disabled people because
there is a tendency in the medical system already to think of us as terminally ill even though we may all live on for years with the right support. I understand the need to try and create some middle ground, and I wish we could do that, but I don’t see a way of making that happen.
It’s long been known that doctors and medical personnel underestimate the “quality of life” experienced by disabled people, who love our lives as much as nondisabled people.
Voket asks whether the legislation has gone terribly wrong in other places, and Cathy refers to a list of abuses and complications compiled by the Disability Rights Education and Defense Fund (DREDF). Cathy mentions without name the case of Michael Freeland, “with a 40-year history of suicide attempts being given the drug.”
It’s also been true that, once established as a benefit, assisted suicide (or in some other countries, straight up euthanasia) gets extended to more and more conditions, such as non-terminal conditions like diabetes and multiple sclerosis in Oregon, and depression and feeling “tired of life” in other countries. People can become “terminal” because their insurance denies coverage to and people can’t afford necessary treatment, or they stop their life-sustaining treatment.
Voket concludes the interview by asking Cathy if Second Thoughts CT could support “the other potential proposals involving end-of-life legislation that might hit the State House floor this session?”
Cathy affirms Second Thoughts’ support for “palliative care and anything that would support a person as they are nearing the end of life,” and of “good suicide prevention strategies.”
Our question is, how can the State of Connecticut be promoting suicide prevention while possibly at the same time promoting suicide assistance? And the difference is what label you wear, whether you are deemed as terminally ill, elderly, having a “complete” life — which is something they use in other places, or “disabled.”
Cathy loves her life and is upbeat about how supports can meet the challenges of disability. As she stated at the beginning of the interview, the problem isn’t disability but the deadly prejudice against it. And the answer is to remove that prejudice, not the people it targets for death.
Second Thoughts Connecticut: https://www.facebook.com/SecondThoughtsConnecticut
Radio Show Broadcast, beginning at 37:20: https://audioboom.com/posts/7772188-family-empowerment-now-stepping-forward-cfgnh-second-thoughts-ct
Not Dead Yet, with partners the Disability Rights Education & Defense Fund and the Patients Rights Action Fund, have assembled a total of 30 disability rights and racial justice organizations to support further regulatory action by the U.S. Department of Health and Human Services Office for Civil Rights. Specifically, the groups are urging the formal HHS release of the recently issued but not yet published Request for Information (RFI) on “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (PDF) (RIN: 0945-AA15).
The RFI details and seeks public input concerning disability discrimination in a number of healthcare areas, including life-sustaining care, organ transplant eligibility, Crisis Standards of Care, suicide prevention programs and services, the child welfare system, health care value assessment methodologies (e.g. QALYs), and auxiliary aids and accessible medical equipment.
In the introduction to the RFI, the Office for Civil Rights noted having received reports of discrimination from many sources, making particular note of the National Council on Disability’s Bioethics Series:
OCR has received reports of discriminatory practices from researchers, advocates, organizations of persons with disabilities, and through its own work. The National Council on Disability (“NCD”), an independent Federal agency, has issued studies examining disability discrimination in health and human services and has recommended that OCR provide guidance, regulations, and increased enforcement with respect to multiple aspects of these issues as they relate to health and human services programs and activities funded by the Department.
The advocates’ letter urging formal publication of the RFI is below (and on a separate page here). Interested persons can support this effort by emailing messages to Secretary@hhs.gov.
U.S. Department of Health & Human Services
Office of the Secretary
200 Independence Avenue, S.W.
Washington, D.C. 20201
February 11, 2021
Re: Support for “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15)
Dear Acting Secretary Cochran:
As the new administration undertakes its important role of regulatory review, we, the undersigned, write in full support of HHS’s continuation of regulatory action in the form of proposed rulemaking on the important issues related to disability nondiscrimination and Section 504 of the Rehabilitation Act raised in the recently issued Request for Information (RFI), “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities”(RIN:0945-AA15). In addition, we urge HHS to release guidance rapidly on Crisis Standards of Care, as explained below.
Even though much has been accomplished in the near 50 years of the Rehabilitation Act, and having just celebrated the 30th anniversary of the Americans with Disabilities Act, we all recognize that much is left to be done. The COVID-19 pandemic has only underscored and further uncovered discriminatory actions and attitudes in the provision of healthcare against Black and Indigenous people, other people of color, elders, and people with disabilities. With regard to the latter, as recent reports from the National Council on Disability show, people with disabilities still face significant disparities and obstacles to access in healthcare. The issues addressed in this RFI look to root out the common thread they all share: too many medical professionals see life with a disability as less worth living and less worthy of care, sometimes so much less so that they view death as the correct course. Continuing to allow those sentiments to influence the provision or denial of healthcare in any area addressed by these Section 504 issues is a threat to the integrity and equity of all healthcare, particularly because anyone at anytime can acquire or age into a disability.
The RFI addresses important protections for people with disabilities such as life-sustaining care, including in times of crisis, such as during natural disasters and pandemics, and the equitable distribution of scarce medical resources in organ transplants. Since HHS has been playing a critical role in investigating and addressing civil rights complaints regarding Crisis Standards of Care across the country, you are no strangers to the fact that triage teams are deprioritizing care to patients with disabilities based on prognoses after COVID survival; and some payers are using subjective “quality of life” metrics such as QALYs as well as “life cycle considerations” which are both subjective and presumptive, not clinically based, and always cut against older adults. Because these discriminatory Crisis Standards of Care continue to be promulgated by states and the lives of people with disabilities are currently at risk, we urge both immediate guidance and long-term, enforceable regulation on this issue. The RFI ensures the accessibility of suicide prevention programs and services, auxiliary communication aids, and support personnel. It also addresses the issue of potentially mandatory accessible medical device standards—an ongoing healthcare access priority for the community. The RFI also speaks to equality in social services so that people with disabilities cannot be summarily barred from custody of their own children or from consideration to adopt; it also solicits comment on the important issue of the Olmstead obligations of child welfare entities to ensure children with disabilities are served in the most integrated setting appropriate. Thus, an update as proposed in the RFI to the Section 504 regulations could not be more timely.
In light of these considerations and your Department’s concern for and enforcement authority over the civil rights of people with disabilities and all people in healthcare, we strongly support continued regulatory action in the form of proposed rulemaking as outlined in “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15).
Thank you very much for your time and consideration.
Sincerely,
American Association of People with Disabilities (AAPD)
Maria Town
President & CEO
American Civil Liberties Union (ACLU)
Ronald L. Newman
National Political Director
American Council of the Blind
Clark Rachfal
Director of Advocacy and Governmental Affairs
Association of Programs for Rural Independent Living
Billy Altom
Executive Director
Autistic Self Advocacy Network (ASAN)
Julia Bascom
Executive Director
Autistic Women & Nonbinary Network
Sharon daVanport
Executive Director
Center for Disability Rights, Inc. (CDR)
L. Dara Baldwin, MPA
Director of National Policy
Center for Public Representation
Cathy Constanzo
Executive Director
Center for Law and Social Policy (CLASP)
Disability Rights Education and Defense Fund (DREDF)
Susan Henderson
Executive Director
Justice in Aging
Kevin Prindiville
Executive Director
League of United Latin American Citizens (LULAC)
Sindy M. Benavides
Chief Executive Officer
Little People of America
Mark Povinelli
President
Minnesota Alliance for Ethical Healthcare
Nancy Utoft
Board Chair
National Association of Councils on Developmental Disabilities
Donna Meltzer
CEO
National Association of the Deaf
Howard A. Rosenblum, Esq.
Chief Executive Officer & Director of Legal Services
National Coalition for Mental Health Recovery
Daniel Fisher
President
National Council on Independent Living (NCIL)
Kelly Buckland
Executive Director
National Disability Rights Network
Curtis L. Decker
Executive Director
National Federation of the Blind
Mark Riccobono
President
National Organization of Nurses with Disabilities
Michelle Kephart
Executive Director
Not Dead Yet
Diane Coleman
President & CEO
Paralyzed Veterans of America
Susan Prokop
National Advocacy Director
Partnership to Improve Patient Care (PIPC)
Tony Coelho
Chairman
Patients’ Rights Action Fund (PRAF)
Matt Vallière
Executive Director
Patients Rights Council
Rita L. Marker, JD
Executive Director
Physicians for Compassionate Care Education Foundation
Dr. Kenneth R. Stevens, Jr., MD
President
Salvador E. Alvarez Institute for Non-Violence
Serena Alvarez, Esq.
Executive Director
TASH
Michael Brogioli
Executive Director
United Spinal Association
Vincenzo Piscopo
CEO/President
World Institute on Disability
Marcie Roth
Executive Director & CEO
CC:
Susan Rice
Domestic Policy Council
White House
Robinsue Frohboese
Acting Director
Office for Civil Rights
US Dept. of Health and Human Services
Alison Barkoff
Acting Administrator and Assistant Secretary for Aging
Principal Deputy Administrator
Administration for Community Living
The COVID pandemic revealed that people with disabilities have been denied treatment for the virus due to their disabilities and pervasive biases about their “quality of life”. This denial of care raises the very real issue that persons with disabilities are and will face similar discrimination under assisted suicide laws.
Healthcare providers are the gatekeepers of assisted suicide in states where it’s legal, rendering a terminal prognosis, certifying lack of coercion, etc. Assisted suicide laws immunize providers (and other persons) from criminal and civil liability in the death of an individual. Careful examination of the language in these laws reveals the absence of meaningful safeguards. Nevertheless, public acceptance has largely depended on trust in medical providers’ willingness and ability to protect very ill individuals from mistakes, coercion and abuses, up to and including negligent or intentional homicide. The pandemic has demonstrated that such trust is misplaced.
Media Coverage of Discriminatory Denial of COVID Treatment
A “vast majority” of doctors say people with a significant disability have a worse quality of life, according to a recent poll by Dr. Lisa Iezzoni, a Harvard Medical School professor and physician who studies health care disparities for people with disabilities. Her research […was] published in the journal Health Affairs in early 2021.
Unfortunately, discriminatory denial of COVID treatment is not unique to Oregon.
COVID Crisis Standards of Care Discriminate Unlawfully
In response to concerns about shortages of ventilators and other resources to treat COVID patients, many states, local authorities and medical facilities developed policies for allocating resources if there were shortages. These “crisis standards of care” included denial of treatment based on such criteria as:
loss of reserves in energy, physical ability, cognition and general health (WA)
cancer with a less than 10- year survival expectation (PA)
individuals who use ventilators on a regular basis may have their ventilators removed and reallocated (KS).
In early 2020, disability advocates began filing formal discrimination complaints against these policies, which were serious enough for the Office for Civil Rights of the U.S. Dept. of Health & Human Services to issue a bulletin stating that:
[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age.
Settlements between the Office for Civil Rights and certain states have resulted in critical policy improvements, but other states have failed to change their policies to comply with federal laws prohibiting discrimination based on disability.
Racial Disparities in Healthcare Increase the Injustices and Risks
Last summer, leading disability rights organizations called for an investigation of an Austin Texas hospital’s conduct relating to Mr. Michael Hickson, a Black man with physical and cognitive disabilities caused by brain injury, who died at the hospital on June 11, 2020. A complaint to OCR stated, “[T]he hospital refused to provide him treatment for his COVID 19, because of his disabilities. One of the doctors, in response to Mrs. Hickson asking if the reason they would not treat him was because of his lack of quality of life due to his disabilities, responded yes.”
Racial disparities in denial of healthcare treatments also increase the dangers of assisted suicide. Leading Black Disabled activist Anita Cameron has explained:
“People of color and people from other marginalized communities are at risk from assisted suicide laws because racial disparities in healthcare:
Lead to limited health choices and poorer health outcomes.
Make it more likely that doctors will “write off” patients as terminal.
Make it less likely that patients can afford life-saving treatment.
Make it less likely that patients will receive adequate pain treatment.
With all this, it is clear that legalizing assisted suicide puts people of color, the elderly, people with disabilities and people of certain socioeconomic status at risk of death through mistakes, abuse and coercion.”
National Council on Disability Bioethics Series Documents Rampant Medical Discrimination Against People With Disabilities
The National Council on Disability issued a series of groundbreaking reports on medical discrimination against disabled people, stating:
Despite the growing understanding that disability is a normal part of the human experience, the lives of persons with disabilities continue to be devalued in medical decision-making. Negative biases and inaccurate assumptions about the quality of life of a person with a disability are pervasive in U.S. society and can result in the devaluation and disparate treatment of people with disabilities, and in the medical context, these biases can have serious and even deadly consequences.
These reports covered such topics as organ transplant eligibility, futility policies, “quality adjusted life years” value measures and assisted suicide. As “The Danger of Assisted Suicide Laws” states:
The idea that hastened death is a pathway to dignity for people facing physical decline reveals the public’s extreme disparagement of functional limitations and a perception that “dignity” is not possible for people who rely on supports, technology, or caregivers to be independent or alive. Many hold the attitude that a person with a disability may be better off dead than alive.
Conclusion
Advocacy organizations supporting assisted suicide laws have pushed for public acceptance based on a generalized trust that medical providers are both willing and able to protect very ill individuals from medical mistakes as well as coercion and abuse. But that trust is, in many cases, misplaced and, in all cases, unrealistic. Claims that there have been no abuses are patently false, but more cases would surface if these laws were not designed to hide them. Assisted suicide laws must be rejected. The so-called “safeguards” cannot protect older, ill and disabled people from the discriminatory attitudes that permeate society including, as COVID policies have shown us, the medical system on which all of us depend.
