ADA31 Lead On – Celebrize! Celebrate & Recognize Non-Apparent Disabilities

Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

My name is Anita Cameron. I am Director of Minority Outreach for Not Dead Yet, a Rochester, NY-based, national disability rights group opposed to medical discrimination against disabled people, medical rationing, euthanasia and doctor assisted suicide.

I’m also a psychiatric survivor. I live with chronic depression and anxiety.

My first experience with the mental health system was at age 19. I was living in rural Western Michigan in a little apartment that I was quite proud of. I’d recently moved there from Chicago, and had been living on my own since age 16, when I entered university.

I was born with multiple disabilities, including low vision and epilepsy, but I was able to live independently in the community.

While living in Michigan, my seizures became uncontrolled and I was hospitalized 30 miles from home, as my tiny town had no hospital. When my seizures were finally controlled with a new medication, I wanted to go home to my apartment.  The hospital stalled, but one day, the sheriff came to pick me up. I assumed that they were taking me home, but no – they took me 300 miles from home – to a psychiatric hospital! I was taken before a judge, and it was explained to me that because I wanted to go home, I was considered a danger to myself, because disabled people shouldn’t live alone. I was committed for up to 60 days, but I wound up fighting for 8 months to get out of there. Finally, with the help of my music therapist, I was able to get out and return home to Chicago.

That experience was so traumatic that it led to decades of a revolving door experience in psychiatric hospitals. I was depressed and suicidal, indeed, I had attempted suicide many times.

After years of therapy, I got to the point where I no longer wanted to die. I fought for my life and for my mental health and I won! It’s been 16 years since my last hospitalization. I’m also a writer, and I use my writing to get my feelings out and clear my head. If not for writing, I don’t know if my recovery would have been fully possible. I’ve written about mental health issues and the discrimination we face.

I then used my writing to create gig opportunities for myself, culminating in my position at Not Dead Yet. I have written persuasively about opposition to a public policy of assisted suicide from the perspective of communities of color who experience disparities in access to healthcare. I was even cited in the 2019 National Council on Disability report on the dangers of assisted suicide as public policy.

One of the reasons I’m so vehemently against assisted suicide is that it turns suicide prevention on it’s head. It makes death an option for medical treatment, which is absolutely terrifying.

Now, in some states where assisted suicide is law, assisted suicide proponents are trying to broaden it by advocating that those dealing with mental health issues should be able to request doctor assisted suicide. This is already law in countries like The Netherlands, Belgium and most recently, Canada, though there will be an 18-month study period before it’s implemented.

We cannot allow this to happen! Those of us with mental health conditions need services and supports, not death! As long as disability discrimination exists in healthcare, as long as mental health conditions and people living with them continue to be stigmatized and ostracized, death should never be a “treatment” option under any circumstances.

If you’d like you learn more about why physician assisted suicide and other forms of disability discrimination in medicine are dangerous public policy, visit Not Dead Yet at www.notdeadyet.org and DREDF at https://dredf.org/public-policy/assisted-suicide/.

NCIL’s Advocacy Priorities Guide Includes Key NDY Policy Issues

As July 26, the 31st Anniversary of the Americans With Disabilities Act, approaches, the National Council on Independent Living is holding its annual conference. NCIL has announced that its annual Advocacy Priorities Guide is now available, containing “specific information on the national legislative and policy priorities identified biannually by the NCIL membership.”

NCIL’s Healthcare priorities include four key areas:

  • Expanding Coverage
  • Prohibiting Healthcare Discrimination
  • Chronic Pain and Opioids
  • Opposing Assisted Suicide

Here’s the section on:

Opposing Assisted Suicide

Assisted suicide laws pose major dangers to people with disabilities. Every national disability organization with a position on assisted suicide opposes it. Many national medical organizations also oppose it. This includes the American Medical Association and the American College of Physicians. Many states have repeatedly refused to pass assisted suicide laws as well. The reasons we oppose it include:

When assisted suicide is legal, it is the cheapest treatment available. This is attractive in our profit-driven healthcare system. This is dangerous.

Terminal diagnoses are often wrong, and it is nearly impossible to know how long someone has left to live. Assisted suicide laws lead people to lose good years of their lives.

If one doctor says “no,” people can “doctor-shop” (go from doctor to doctor) until they find one who will say “yes”.

The “safeguards” do not protect people. There is no independent witness when the lethal drugs are taken. There is no real enforcement, and no one is charged with investigating. Therefore, there is no protection against abuse or coercion.

Many other pressures exist that can cause people with compromised health to hasten their death.

Evidence shows that assisted suicide laws lead to “suicide contagion,” driving up the general suicide rate.

We already have the right to good end-of-life pain relief. This includes palliative sedation, if needed. Palliative sedation uses medication to decrease awareness to relieve suffering.

In 2019, the National Council on Disability released a report on Assisted Suicide. The report examined the effect of the country’s assisted suicide laws on people with disabilities. The report found that the laws’ safeguards are ineffective. It also found that there is no oversight of abuses or mistakes. Many of those abuses have been documented by the Disability Rights Education and Defense Fund (DREDF).

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NCIL  also included the following critical priorities on discrimination.

Prohibiting Healthcare Discrimination

There is a lot of discrimination against people with disabilities in healthcare. This has serious consequences, like substandard care and less access to needed services. The COVID-19 pandemic highlighted this for us. States and hospitals created new rules that discriminated against disabled people. They developed plans for “medical rationing” that determined who does and does not get treatment and care. Some disabled people were denied treatment altogether.

Black, indigenous, and other people of color (BIPOC) have died at alarming rates during the pandemic. LGBTQIA+ people and many other marginalized groups have also faced discrimination. Discrimination in healthcare has always had deadly consequences. During the pandemic, it has meant drastically higher infection and death rates.

NCIL supports strong enforcement of nondiscrimination laws. We also support new laws to address discriminatory practices. Some of our biggest areas of concern include:

  • Medical equipment in clinics, offices, and facilities that is not accessible;
  • Failure to communicate or provide information in accessible formats;
  • Discrimination involving pressure to refuse life-sustaining treatment;
  • Discriminatory “futile care” policies allowing healthcare providers to decide not to give life-saving treatment to someone even if they want it;
  • Discrimination in organ transplants; and
  • Quality Adjusted Life Years (QALYs). Insurance companies use QALYs to decide how much – or whether – to pay for certain treatments and services. Different disabilities and health conditions are given different number values. These are used to calculate the “value” of the treatment or service.

 

Not Dead Yet UK: Evidence of a Slippery Slope?

Evidence of a Slippery Slope?

By Not Dead Yet UK

June 14, 2021

Supporters of our campaign to resist a law change on assisted suicide have continually expressed real concerns about the concept of  “a slippery slope”. The idea that once assisted suicide is permitted for one group it isn’t long before it’s extended to include other groups and that this is a bad thing. Our opponents have argued that this is simply not true, that a slippery slope does not exist.

Let’s briefly examine what has been happening in Canada.

In December 2015 – the Quebec Province in Canada (a regional government) passed the Act Respecting End of Life Care, which permits Medical Aid In Dying (MAID).

June 2016 – The law was extended to other Provinces and Territories, making Quebec’s law legal across the whole of Canada. It prioritises mentally ill and vulnerable people and those who have a grievous or irremediable medical condition, including people with an incurable illness or disease, and disabled people.

https://en.wikipedia.org/wiki/Euthanasia_in_Canada

In March 2020 – the Canadian courts (nationwide) extended the law to include the following:

  • Removal of the requirement that death should be reasonably foreseeable
  • Only one independent witness to request for MAID
  • A personal or health care worker may be a witness
  • Removal of 10-day period for reflection
  • The waiver should be given in advance

On 17 March 2021 – the Canadian legislature expanded MAID to a broader group of people:

  • A person does not need to have a fatal or terminal condition to be eligible for MAID.
  • Mentally ill patients can give an advanced waiver to sign off for MAID before they are compromised by their condition.

https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html

The numbers of people assisted to end their lives in Canada are consistently growing year on year:

https://bit.ly/3glUlmp

The Canadian Government now propose that in March 2023 it plans to give patients with mental illness alone and no other underlying issues the option for a MAID.

Within six years the scope of the assisted suicide legislation in Canada has been amended twice with further amendments planned. More people are now eligible, the death rate is increasing and the protections have been weakened we’d call that a “slippery slope”.

Carol Cleigh Sutton: Ableism Is Violence

Image of Carol Cleigh Sutton, a fair skinned woman with white hair, pulled back, wire rimmed glasses, and a white turtle neck top with a silver necklace featuring two connected silver handcuffs with small white stones.
Carol Cleigh Sutton

Listening to the other presenters, many of whom  mentioned ableism, but most especially to the names being read – for more than an hour – during the Disability Day of Mourning, something I’ve known for years snapped into focus and demanded to be written: Ableism is Violence.

The problem is Abled Chauvinism. Like men vis á vis women, the severely abled are deeply, violently, wholly convinced, indoctrinated, certain of their superiority over us in all things, at all times and in all places. It goes beyond privilege and leaves microaggression in the dust. Early feminists said things like, “I may be a woman, but that doesn’t make me disabled.” Well, these wheels upon which I sit make me disabled. That doesn’t mean that anyone is superior to me in any meaningful way. I would concede that many people are my superior in, for example, athletics. Athletics, though, is not a meaningful area of pursuit for me. But most severely abled people would come off far behind Marcel Hug, for example, so even that is not an area of unequivocal abled superiority.

A lot of people think of ableism, if they think of it at all, as a softer, gentler form of discrimination. Some believe that it is in some ways beneficial to disabled people. I’ve even been told that it is not really like racism or sexism because, “no one would actually harm a disabled person.” No,  just murder us and then sympathize with our murderers. Ableism is violence. It is real violence done to real people. It harms and it kills.

As I write this, I can hear them saying, “yes, but it comes from a place of love.” I explain about the leavings of a male bovine. They say, “yes, but it’s really for the best, they were suffering.” I cry bullshit. “Yes, but their lives were a burden.” BULLSHIT! All of these attempts at rationalization are the violence of ableism trying to hide its ugliness inside the trappings of compassion. Their ‘compassion’ is poorly disguised contempt. It is ableism. Ableism is violence.

There is jingoism, chauvinism in the severely abled’s attitudes towards us. I remember an interview I saw with Ed Roberts. Ed recalls being told by everyone around him that he couldn’t have a life, an education, a family or a career and how he tried to kill himself. Then he got some control back and it all changed. He decided to live and he got all of those things and created structures to help others get them as well. Yet, he recounts being met with frank disbelief when talking about having a rich, full life. There is pervasive, pernicious, ableist belief that life with disability is unremitting suffering, sadness and pain. This belief that our lives are horrific and any sane person should rather die, this is the core of the BDTD (better dead than disabled) movement. The very fact that there are large, multi-million dollar organizations promoting this filth, this violence is an affront. It is hate. It is ableism. It is violence. It needs to stop.

ABLEISM IS VIOLENCE.

Wrongful Death & Disability Discrimination Lawsuit Filed In Michael Hickson Case

June 11, 2021
By: Andrés J. GallegosJennifer M. Sender

ROBBINS, SALOMON & PATT, LTD. SEEKS JUSTICE FOR MICHAEL HICKSON,
FILES WRONGFUL DEATH LAWSUIT AGAINST ST. DAVID’S SOUTH AUSTIN MEDICAL CENTER & ITS PHYSICIANS

Robbins, Salomon & Patt, Ltd. (RSP) on June 10, 2021, filed a multi-count wrongful death lawsuit against St. David’s South Austin Medical Center (SDMC) and two of its physicians, in the United States District Court for the Western District of Texas, Austin Division. Despite the absence of an irreversible or terminal condition, SDMC physicians deprived Mr. Michael Hickson, a 46-year-old black man with multiple disabilities, of all life-sustaining treatment including artificial nutrition and hydration for six days resulting in his death.

Admitted to SDMC on June 2, 2020, Mr. Hickson was fighting sepsis, a urinary tract infection and pneumonia. Although he had suspected COVID–19, he had a negative COVID-19 test several days prior to his admission. While seriously ill, all of those conditions were treatable. In fact, only three months prior, SDMC successfully treated him for sepsis, urinary tract infection and pneumonia. Upon admission, SDMC assessed Mr. Hickson having a 70% chance of survival. Almost immediately thereafter, however, SDMC physicians determined he was not worth treating and crafted a plan of “comfort care” only.

Antibiotics were initially provided, and lab results determined they were effective. Mr. Hickson’s physicians even identified the specific bacterial organism at the root of his infection.  Yet, only three days later, they abruptly withdrew the antibiotics and all life-sustaining treatment, designated Mr. Hickson as Do Not Resuscitate, and placed him in hospice. When pressed for an explanation as to why they would not treat him, in a legally recorded conversation, Dr. Viet Vo told Mrs. Melissa Hickson, “as of right now, his quality of life, he doesn’t have much of one.” Dr. Vo then distinguished Mr. Hickson from other of his patients who were being treated aggressively for COVID–19, “his quality of life is different than theirs. They were walking, talking.”

The lawsuit asserts multiple counts of disability-based discrimination, gross medical negligence, wrongful death and deprivation of Mr. Hickson’s constitutional right to life, against SDMC and two of its physicians, Dr. Vo and Dr. Carlye Mabry Cantu. The lawsuit also asserts a count of intentional infliction of emotional distress against SDMC and Dr. DeVry Anderson, its Chief Medical Officer. Among other matters, from June 8 to June 11, 2020, SDMC denied Mrs. Hickson access to her husband, even denying FaceTime visits, claiming the hospital’s iPad was not working on those days. An incredulous claim from a hospital with reported gross patient revenue of over $4.7 billion in 2019.  On July 2, 2020, Dr. Anderson released a media statement concerning Mr. Hickson, demeaning Mrs. Hickson and disclosing his protected health information, falsely stating he had consent from Mr. Hickson’s family. The complaint is available here.

RSP’s litigation efforts are led by Andrés J. Gallegos and Jennifer M. Sender. RSP is co-counseling with Whitburn and Pevsner, PLLC.