Head and shoulders photo of Anita Cameron, an African American woman with long locs and brown sweater.
As the Juneteenth celebrations approach, it’s important to know and understand racial disparities in healthcare, the impact it has on the Black community and why Black people, particularly disabled people, must fight against doctor assisted suicide.
There is a long and shocking history of medical abuse and experiments on the Black community,[1]fueled by racism and stereotypes, that has led to, and continues to spur, disparities in healthcare.
From the earliest days of this nation, Blacks have received abysmal treatment at the hands of doctors. Black enslaved people were property and seen as little more than animals. Enslaved people came to know that when they were purchased by doctors, their lives would be especially hard because they would be experimented on without anesthesia. In everyday life, enslaved people who became ill got the most cursory of medical treatment; most slaveowners called in the veterinarian for them, while whites got to see a regular doctor.
An illustration of the worthlessness of the Black body and how expendable we were can be found in the practice of J. Marion Sims, called the “father of modern gynecology”. He used enslaved Black women to test his techniques and to perform surgeries on without anesthesia. When white staff could no longer bear the screams of agony of Dr. Sims’s patients as he did surgery on them, other Black enslaved women were forced to restrain the patients during these barbaric acts.
After slavery, the treatment of Black patients did not improve much. Hospitals and medical schools saw us as medical or research material rather than patients and based their diagnoses, prognosis and treatment on vicious racial stereotypes about us and our community. Many types of junk science such as phrenology, which made racial assumptions based on the size of, and bumps on the skull, were in vogue, and it greatly influenced the thoughts and attitudes of the white medical establishment towards us.
Black doctors in the late 19th and early 20th centuries often could not practice medicine in the United States, and those who were allowed to could not have white patients. They spoke out against the cruel and disrespectful treatment of Blacks in hospitals and research centers but were largely ignored. Unlike whites, who could sue for mistreatment, Blacks had no legal recourse. Our community came to fear hospitals and deeply mistrust doctors, particularly white or non-Blacks because we knew that at their hands, we would die or at the very least, suffer abuse.
Today’s racial disparities in healthcare are a direct result of this history. Blacks are more likely to die from a heart attack or cardiac disease, yet we receive inferior care compared to whites.
The stereotype that Blacks are closer to animals, and therefore feel less pain than whites, has led to Black patients receiving abysmal treatment for pain. Our pain isn’t taken seriously. We are accused of being hysterical, emotional, malingering or outright drug seeking. In a recent study of 1 million children with appendicitis in emergency rooms around the nation, Black children were one-fifth as likely to receive opioid painkillers for their severe pain as white children.[2] In a 2016 study, 1/3 of 222 white medical students and residents surveyed held the false belief that Blacks had thicker skins, like animals, and a higher tolerance for pain.[3] They were less likely to perceive the intensity of Black patients’ pain and recommend appropriate treatment.
We die from diabetes at twice the rate of whites. We are the sickest patients waiting for organ transplants, yet often die waiting despite the role that level of need supposedly plays in transplant priorities. Blacks are diagnosed with cancer at much later stages and our prognosis is worse. Due to the stereotype of Black patients’ noncompliance with doctors’ instructions and orders, we are not afforded the state-of-the-art medical care that white patients routinely get, especially when they have the money.
Much of what was learned about medicine in America was learned on the backs of Black slaves and poor Blacks. One example that comes to mind is the infamous Tuskegee Experiment, where poor Blacks, mostly men, were not treated for syphilis, but allowed the disease to take its course so that doctors could learn what the end results were. HeLa cells, the first line of immortal human cells, were taken from the body of Henrietta Lacks, a Black woman who died of cervical cancer in 1951, without the knowledge or consent of her or her family. Those cells are still being used in medical research today.
Now, there is COVID-19, also known as coronavirus. What started as an outbreak has turned into a worldwide pandemic, with over one million Americans dead.
The Black community, especially, is being ravaged by COVID-19. We are three times more likely to die from it, and four times more likely to be hospitalized for it. COVID 19 has laid bare racial disparities and disability discrimination in healthcare that leads to medical rationing and futility decisions that can end a patient’s life.
Michael Hickson’s case is a clear case of discrimination against disabled people.
Michael Hickson was a 46-year-old Black man from Texas, the father of 5 children. Mr. Hickson was a quadriplegic, the result of a brain injury caused by a heart attack.
He was placed in a nursing home, where he contracted COVID-19. He was sent to St. David Hospital, in Austin, Texas. However, due to his disability, the doctors decided not to treat him, stating that he had no quality of life, though family videos show him laughing and singing with his wife and children.
He was placed in hospice and allowed to die.
So, what does this have to do with doctor assisted suicide? Everything! If you are not getting effective pain treatment for a terminal illness and you live in a state where assisted suicide is legal, you’ll be more likely to seek that recourse. If you are poor and live in such a state, your doctor or others can convince you to “choose” assisted suicide so that you won’t be a financial burden on your family.
We Blacks are overwhelmingly against assisted suicide. In the face of rampant healthcare disparities, it’s no surprise that doctor assisted suicide is rarely used by the Black community. But there’s an organization called Compassion and Choices that’s going into Black communities trying to convince us that doctor assisted suicide is a good thing and that it’s a “right.” They bamboozle us by couching it in those terms, because we know what it feels like not to have basic human and civil rights.
Compassion and Choices is an organization formed and led by middle and upper middle class whites. This demographic of white people overwhelmingly support assisted suicide but they have now hired middle-class Black staff to come into our communities to spread the lie because they know that we’re more likely to listen if something comes from someone who looks like us. As a result, some middle-class Blacks are falling for this farce.
As doctor assisted suicide becomes normalized, racial disparities in healthcare will mean that Black patients will be more likely to be written off as terminal and steered towards ending our lives. As the late comedian and activist, Dick Gregory said, “If we’ve lived all of our lives with you not paying attention to us living well, why do you want to talk about us dying well?”
Black people, wake up and remember our history! Realize and understand what white supremacy is and how it works! Listen to our elders. Listen to Black disabled folks whose lives are devalued every day. Listen to poor Black folks on the street who can tell of the injustices they suffer in emergency rooms across the nation because they’re poor and homeless. Compassion and Choices does not have the best interests of the Black community in mind. They do not care about us; they are merely promoting an agenda. They know full well about the racial disparities in healthcare, but are hoping that either we don’t know or that we have forgotten. They want us to believe that since we Blacks are less likely to receive adequate end of life care that assisted suicide is the answer. It is not! It is not our culture. It puts us, particularly if we have disabilities, are sick or are elders, at grave risk. It is discrimination of the highest order and we must fight back and fight hard against this malevolent form of white supremacy.
[3] Kelly M. Hoffman, Sophie Trawalter, et al., Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
Every year on June 15th, the USC Center for Elder Justice leads people and organizations across the globe in spreading awareness about elder abuse. The World Health Organization defines elder abuse as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person.”[1] Not Dead Yet recognizes the insidious role elder abuse can play in coercing older people to request assisted suicide.
Regardless of the purported “safeguards” in assisted suicide laws, we know that older adults are susceptible to forms of abuse that could lead to an accelerated and unwanted death in a state or country where assisted suicide is legal. Financial exploitation, particularly the phenomenon that Australian elder abuse researchers refer to as “inheritance impatience,”[2] is a troubling example of this. Heirs and caregivers who stand to profit off the death of an older person may advocate for choices that accelerate death and make payday come faster. There is evidence of people being coerced into signing revisions to their will made by a greedy beneficiary.[3]
What is to stop someone from being pressured or threatened to literally sign away their life by “consenting” to assisted suicide? Witnesses to the signature may be required, but they need not know anything about the person, their family or circumstances.
Many leaders in the fight to end elder abuse contend that the responsibility is on younger and/or healthier people to intervene when they suspect an older person is suffering mistreatment.[4] But what happens when people in a position to step in do not have the best interests of the older person in mind? Obviously, not every perpetrator of elder abuse is doing so out of hatred, malice or greed. Many people may inadvertently make an elderly person feel like a burden, for example, when they talk about the high cost of care for that person, or the struggles that come with moving them into a family member’s home, as is more often the case when structural supports for home and community-based services are absent in communities.[5] Legalizing assisted suicide opens up another avenue for elders to be abused and killed.
Finally, older adults may feel pressured to request assisted suicide because, as the Oregon assisted suicide reports show, they feel they are losing their dignity, independence, or ability to participate in activities they enjoy. These feelings reflect society’s ableism, biases against disability they have absorbed over a lifetime and may now turn against themselves. Changing such attitudes is a critical part of the Disability Rights Movement.
Not Dead Yet continues to oppose assisted suicide legislation to keep older, disabled, and chronically ill people safe from the ultimate harm. For more information about World Elder Abuse Awareness Day, visit this website.
According to a 2013 Pew Research Center study, 65% of the Latino community is against assisted suicide. That’s more than half of the Latino community. We understand how dangerous these practices are. But I would like to see the entire community against assisted suicide.
Have you heard of the Disability perspective? I am going to give it to you through this essay.
Jensen Caraballo
I was organizing with ADAPT when I first learned about the anti-assisted suicide movement. I was getting arrested for disability rights issues; in particular issues of forced institutionalization. I was once forced into an institution too, which is what drove me towards the Disability community. I learned about assisted suicide through my work in the field. I never learned about the anti-assisted suicide movement until after I started engaging in disability rights organizing. I did some advocacy with Not Dead Yet and nonviolent direct action in Chicago.
My name is Jensen Caraballo, I was born with a neuromuscular Disability called Spinal Muscular Atrophy, and I am originally from Puerto Rico. I am going to give you some hard facts about assisted suicide and why I am against it.
One problem is doctors’ attitudes towards people with disabilities. “In [a] survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. . . . [T]hese findings about physicians’ perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.” (Lisa Iezzoni, et al., Physicians’ Perceptions Of People With Disability And Their Health Care,” Health Affairs, February 2021)
The main reasons people want assisted suicide have nothing to do with pain.
According to the Oregon data, where assisted suicide has been legal the longest, the reasons are: loss of autonomy, decreasing ability to participate in enjoyable activities, loss of dignity, feelings of being an emotional or financial burden on family and loved ones, and loss of control of bodily functions, such as incontinence and vomiting.
Terminally ill people are part of the Disability community. This means that Disabled people will be murdered by mistake, coercion or abuse. This is damaging to the Disability community. It is dangerous. Nondisabled people receive suicide prevention, while Disabled people get assisted suicide.
I am affirmatively against assisted suicide. It’s too easy. Disabled people experience torture and punishment for swearing in institutions. We experience immense violence. This is happening every single day.
As a Disabled Latino man, I feel assisted suicide laws are dangerous. A person can administer death medicine without the person’s consent. Doctors think disabled people have no quality of life.
We want community-based services and palliative care. It’s too easy for abusers to kill off Disabled people without their consent. Disabled people are often denied community supports while society is offering assistance with suicide.
Some people are locked away in nursing homes. They are trapped in nursing facilities. Institutionalized. Forgotten. Alone. Wondering about freedom and a life full of choices. Autonomy. Where people get to decide exactly how they want to exist. Assisted suicide is dangerous for the Disability community.
ADAPT (American Disabled for Attendant Programs Today)
ADAPT National
American Association of People with Disabilities
Assn of Programs for Rural Independent Living
Autistic Self Advocacy Network
Autistic Women & Nonbinary 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
World Institute on Disability
We want community based services for Disabled people and fair pay for home care for our homecare attendants and a bill of rights for domestic workers.
Our needs are normal. They are not special. I live in the community in my own apartment with 24/7, 168 hours per week of home care services. I have Consumer directed personal attendant services (CDPAS). I’ve traveled to Japan for culture exchange.
Assisted suicide is scary and dangerous to the disability community. We understand suffering. We suffer exceptional pain. But we do it together. We have to uplift each other and be in loving and caring community.
Show Love. Spread Love and Light upon this darkness. Give people support. Spread life. Spread joy. Be a light to darkness. Assisted suicide is darkness. It’s violent. It’s dangerous. It’s wrong. It should be illegal and stay illegal. Life is worth living. Life is bearable. Life is better when people feel supported and loved and important to the community. Change is needed. I will help make this change. You should make a decision to do the same. You have the power.
Protect Disabled Lives in Massachusetts: Oppose S.1384/ H.2381, which would legalize assisted suicide & risk the lives of disabled people. Use this FORM to send the message to the MA Joint Committee on Health Care Financing that these bills must not pass!
Social Media Templates and Post Ideas
HASHTAGS
Use these hashtags on your posts about S.1384 / H.2381 (MA Assisted Suicide legislation).
Senator Cindy Friedman, @CindyFriedmanMA on Twitter
Senator Harriette Chandler, @Sen_Chandler on Twitter
Rep. John Lawn, @repjohnlawn on Twitter
Rep. Jay Livingstone, @jaylivingstone on Twitter
Senate President Karen Spilka, @KarenSpilka on Twitter
Speaker Ron Mariano, @RonMariano on Twitter
SOCIAL MEDIA POST TEXT TEMPLATES
These templates meet the 240 character limit on Twitter, but you can also use them on any social media platform!
Oppose the passage of S1384/H2381 in MA, @[LEGISLATOR]! Legalizing assisted suicide will result in unnecessary death and the coercion and endangerment of thousands of MA residents with disabilities.
Nothing in S1384/H2381 can stop a bad actor from steering someone towards assisted suicide, picking up the lethal dose, and even administering the drug — no witnesses are required at the death. Tell legislators not to pass this dangerous bill!
Thanks for taking action against legalizing assisted suicide in MA! Please use the following template to send an email to legislators on the Joint Committee on Health Care Financing by following the three easy steps below:
1. Decide who to send your letter to. You can send it to all committee members or to leadership members. Here are the email addresses for each leadership member of the committee, as well as the town(s) they represent:
Senator Cindy Friedman, Senate Chair of the Joint Committee on Health Care Financing: Cindy.Friedman@masenate.gov / (617) 722-1432. Representing Woburn, Arlington, Lexington, Burlington, and Billerica.
Senator Harriette Chandler, Senate Vice Chair of the Joint Committee on Health Care Financing: Harriette.Chandler@masenate.gov / (617) 722-1544. Representing Boylston, Clinton, Holden, Northborough, Princeton and West Boylston, and Worcester.
Rep. John Lawn, House Chair of the Joint Committee on Health Care Financing: John.Lawn@mahouse.gov / (617) 722-2430. Newton, Waltham, Watertown.
Rep. Jay Livingstone, House Vice Chair of the Joint Committee on Health Care Financing: Jay.Livingstone@mahouse.gov / (617) 722-2575. Parts of Boston and Cambridge.
2. Copy and paste the letter below into an email. Be sure to change the details highlighted in yellow to match your own personal details! Feel free to add any relevant personal anecdotes as well, but try to keep the letter fairly short overall.
3. Send the emails! When you’re done, please fill out this quick Google Form so we can track how many people are sending emails about this.
BONUS: Check out our Social Media Action Guide for post templates and graphics that you can use to encourage others to take action as well!
That’s it! You’ve done it! Thank you SO much!
SUBJECT: Protecting the Lives of Disabled Massachusetts Residents
Dear NAME,
I am a resident of [TOWN] writing to urge you to oppose the passage of S.1384 / H.2381 , An Act Relative To End of Life Options. Legalizing assisted suicide, also referred to as medical aid in dying, will result in the coercion, endangerment and unnecessary death of too many Massachusetts residents with disabilities.
Many people considering assisted suicide are not doing so because of unmanaged pain, but because of societal stigma against disability, also referred to as “ableism”. A 2021 report about the use of assisted suicide in Oregon, where it has been legal since 1997, finds that the 5 most common reported reasons patients consider assisted suicide have nothing to do with pain, but with the “loss of dignity” and lack of access to social activities thought to result from disabling conditions. This means that our legislative priorities should not revolve around expediting the death of patients with serious illnesses or disabilities, but around making Massachusetts a more accepting and accessible place for disabled people and improving access to palliative care and pain management so that death does not seem a better option than life.
Additionally, everyone is vulnerable to suggestion and persuasion. Nothing prevents self-interested family membersand medical professionals from pushing for assisted suicide. Meanwhile, it is estimated that 1 in 10 Massachusetts older adults are abused every year, and COVID-19 has only exacerbated this issue. Nothing in the law can stop an heir or abusive caregiver from steering someone towards assisted suicide, witnessing the request, picking up the lethal dose, and even administering the drug — no witnesses are required at the death.
Finally, assisted suicide laws lead to the denial of suicide prevention services to seriously ill and disabled people, a violation of the Americans with Disabilities Act’s guarantee of equal program access. Assisted suicide laws redefine depression and feeling like
a burden as “rational,” rather than as evidence of impairment or need for intervention, as they would be for a non-disabled person. This means that sick and disabled people living with depression may be encouraged to consider assisted suicide under the same conditions that a non-disabled person would be offered mental health resources.
In conclusion, legalizing assisted suicide in Massachusetts will further endanger the lives of an already vulnerable population. No amount of “safeguards” in the bill will protect disabled residents from dying prematurely if assisted suicide becomes legal in our cost-conscious healthcare system. I urge you to prevent this bill from moving further in the legislative process.
