We Want Civil Rights & Healthcare, Not To Be Institutionalized, Tortured or Killed

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Photo of Anita Cameron, headshot of African-American woman with long dreadlocks

For several months, I have been actively involved in the fight for healthcare, resisting the watering down of the Americans with Disabilities Act (ADA), and pushing for FDA regulations against the shock torture of people with disabilities at the Judge Rotenberg Center.

From Washington, DC, to Columbus, Ohio, to Chicago, Illinois and back to Washington, DC, I have protested and gotten arrested fighting for the lives and civil rights of disabled people.

Some may wonder what this has to do with the fight against doctor-assisted suicide. It has everything to do with it!

Cuts to Medicaid and its services means that people with disabilities and chronic illnesses, as well as seniors, will lose access to medications, supports and services and general healthcare. It also means that if someone is diagnosed with a terminal condition in a state where doctor assisted suicide is legal, that person will be even more vulnerable to persuasion or coercion by doctors, family members or caregivers to request the suicide medication due to financial burden.

Our healthcare system is broken and insurance companies are focused on their bottom lines. Insurance companies in Oregon and California have already denied paying for cancer treatment for some patients, offering the suicide cocktail as an option. This is happening to people with some resources; those who lose their Medicaid will have no access to lifesaving treatment, putting them at risk of being pushed into assisted suicide.

The fight to prevent the gutting of the ADA is also important in the fight against doctor assisted suicide because the lack of access to public spaces by people with disabilities can cause anger and depression and contribute to feelings of worthlessness. Many doctor’s offices and equipment are still inaccessible to patients who use wheelchairs or have limited mobility.  The ADA also establishes our civil right to home care instead of being forced into institutions. And, as NDY has long argued, the ADA means that old, ill and disabled people deserve the same suicide prevention as everybody else, not a streamlined path to death.

Most doctors’ attitudes towards disabled people are telling–it’s all about a cure or correcting a problem. Many doctors are quick to devalue our lives, so if a patient is then diagnosed with a terminal condition it would be nothing for them to agree to, or even suggest assisted suicide in states where it is legal.

For me, the fight for healthcare and the ADA, and the fight against torture, are on par with the fight against doctor assisted suicide because the gutting of the former and the tolerance of the latter will lead to an increase in the number of people who will fall into its deadly trap.

Lisa Blumberg’s Op-Ed Featured in New Haven Register

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Lisa Blumberg is an attorney and disability activist in Connecticut. Her op-ed, Why the disability community opposes doctor assisted suicide, appeared today in the New Haven Register. Here are some excerpts.

People who have always been able to get the healthcare they want may assume assisted suicide is a choice issue, but persons who have struggled to get care that is free from bias see it as bad public policy. For us, the issue centers around how much and what kind of power a doctor should be given. Disability rights activists who see themselves as progressives are mobilizing.

Doctors are essential components of these laws and authorizing them to prescribe fatal doses of medication is counter to a society that values the health and well-being of all. If we enact assisted suicide laws, we normalize death as part of the doctor’s black bag. We expand the role of a doctor from provider of healthcare, be it curative, rehabilitative or palliative, to agent of death.

Blumberg highlighted the experience of NDY Board member Bill Peace:

In a searing piece for Hastings Center Reports, anthropology professor William J. Peace, who has paralysis, describes how a hospitalist, who knew nothing about him, gave him the choice to forgo antibiotics rather than endure the rigors, uncertainties, and expenses of recovery from a major pressure wound. Peace’s reaction was fear and demoralization based on the merits of his survival being questioned.

To read the whole article, go here.

Connecticut News: Strong Disability Advocacy and Great Result

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On March 20, Second Thoughts Connecticut members held a press conference and testified against an assisted suicide bill, HB 5417 at a joint Public Health Committee hearing. Channel 8 covered their testimony: ‘Aid in dying’ bill back before lawmakers. They also interviewed Cathy Ludlum and Elaine Kolb. NDY also submitted written testimony.

Although the major print media ignored the outspoken opposition of the disability community, despite their consistent presence and activism against these bills as they were considered the last few years, one very powerful letter to the editor by Second Thoughts member Joan Cavanagh was carried by the New Haven Register:

Once again, a bill in Connecticut legalizing physician-assisted suicide was the subject of discussion at a public hearing on Tuesday, March 20. This year, it is HB 5417, with the Orwellian name, “An Act Concerning End-of-Life Care.” The well-funded “Compassion and Choices” and Secular Coalition of Connecticut promoters of this bill are trying to rally all “liberals” behind it under the false banner of “choice,” claiming that its only opponents are the extreme religious right and the institutional Catholic Church. As always, they deliberately refuse to acknowledge the disability rights community activists, Second Thoughts Connecticut, and the peace and justice activists who have opposed these bills for years.
 
Second Thoughts Connecticut has led the opposition. They don’t just “represent” people whose lives are at risk because their health care is “too expensive.” They are those people. Articulate, determined, and resourceful, they have mobilized year after year to protect their own lives and right to choose. They have also given me courage, and so, from my personal experience in trying to get my elderly mother, a Medicaid patient with dementia, the care she needed to stay alive, I have written, spoken, and testified against this legislation since 2013. (The New Haven Register published my Forum piece about this (https://www.nhregister.com/opinion/article/Forum-Aid-in-dying-bill-neither-11375068.php), March 14, 2014.
 
We continue to clearly see these bills for what they are: another piece of the medical cost-cutting agenda that seeks to “ration” health care for the most vulnerable among us — the poor, elderly and disabled. As a life-long activist for peace and justice, it is beyond my understanding how anyone claiming human rights concerns could continue to advocate for this kind of legislation in the era of alt-right power, where the highest officials in our nation are slashing with impunity the most basic of our hard won, already inadequate, safety nets.
 
— Joan Cavanagh
New Haven
The great news, just in, is that the bill died in committee. This follows a similar victory in Massachusetts. Thanks to everyone who effectively communicated the very real dangers that a public policy legalizing assisted suicide poses to old, ill and disabled people!

John Kelly’s Awesome National Academies Presentation Video and Slides

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This is a very belated post about John Kelly’s February 12th presentation at the National Academies of Sciences, Engineering and Medicine two-day event entitled Physician-Assisted Death: Scanning the Landscape and Potential Approaches — A Workshop. Many of our readers have seen the video, which John posted on Facebook and others have shared. Here we can also provide his presentation slides. First, the video.

Here’s a photo of the first presentation slide, followed by links to PDF and text versions.

To view John’s presentation slides in PDF format, go here. For the Power Point text outline, go here.

We’re grateful for John’s leadership and fortitude in being one of only a few speakers at this event who opposed the legalization of assisted suicide.

 

New Jersey: Disability Advocates Testify Against Assisted Suicide Bill

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Assisted suicide is being promoted once again in New Jersey, going through the Assembly Judiciary meeting. This bill made it through the Assembly twice in previous legislative sessions, but failed to garner enough votes in the NJ Senate. Now, with the election of a new Governor and new members in the Legislature, the supporters of this bill are trying again.

On Monday, March 12, the bill was the subject of a public hearing of the Assembly Judiciary Committee. Disability Rights advocates were on hand to testify against the bill.

Here are the audio link and time markers for the disability witnesses.

http://www.njleg.state.nj.us/media/mp.asp?M=A/2018/AJU/0312-1200PM-M0-1.M4A&S=2018

  • Dawn Parkot and Lindsay Tuman – 1:49:35-1:56:44
  • Kate Blisard 2:38.10-2:41:22
  • Kathryn Carroll 2:53:48-2:57:00
  • Alex Thompson 3:05:54-3:08:13

This bill is virtually identical to the Oregon assisted suicide law, and poses dangers to people with terminal illnesses, as well as people with chronic illnesses and disabilities. Oregon officials have recently written that a person is considered “terminal” under the assisted suicide law if their life depends on any form of treatment or medication and the person does not get that treatment or medication for any reason. This applies whether the person refuses or is denied treatment involuntarily, such as by insurance denial, or for any other reason. State interpretations of Oregon’s law are precedent for other state laws using the same language.

Recent Oregon state reports include the following as qualifying conditions: neurological disease, respiratory disease, heart/circulatory disease, infectious disease, gastrointestinal disease, endocrine/metabolic disease and, in the category labeled “other”, arthritis, arteritis, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders.

Click here for a written version of  Dawn Parkot’s testimony.

Click here for a written version of Kate Blisard’s testimony.

In addition to live testimony, NDY President/CEO submitted written testimony. You can read it here.

The Committee voted the bill out for the Assembly to vote on. A setback, but the fight’s far from over. Thanks so much for the disability activists and activists who are engaging in the fight for our lives – in New Jersey and across the country.