Jules Good: NDY Recognizes World Elder Abuse Awareness Day

ableism, abuse, ageism, assisted suicide, domestic violence, elder abuse, MAID, Our News & Commentary Blog, , , ,

Jules Good, a white person with very short red-brown hair, pictured from the chest up, smiling.
Jules Good (they/them)

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.

[1] UK Elder Abuse Prevention
[2]  NSW Legislative Council, General Purpose Standing Committee No. 2, Elder
Abuse in New South Wales, June 2016
[3] Ibid.
[4] National Center on Elder Abuse
[5] Potential Impact of Additional Federal Funds for Medicaid HCBS

Jensen Caraballo: Assisted Suicide Laws Are Dangerous

abuse, ADAPT, aid in dying, assisted suicide, guest blog, health disparities, Latino, long term services and supports, MAID, nursing homes, Our News & Commentary Blog, Pew Research Center, quality of life judgments, , ,

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.

I am a Puerto Rican male with short, black hair, and glasses on my face. There are a couple posters behind me and a Bluetooth earpiece in my ear. I am smiling.
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.

Assisted suicide negatively impacts disabled people. Many Disability organizations oppose assisted suicide like:

  • 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.

Muster Our Voices and Social Media To Oppose Assisted Suicide In Massachusetts!

"death with dignity", assisted suicide, MAID, Massachusetts, Our News & Commentary Blog, Second Thoughts, social media, ,

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!

Black and red text on a white background reads “Say no to murder by medicine. S1384/H2381 puts disabled lives at risk in Massachusetts. Assisted suicide is not health care. Tell your legislators on the Health Care Financing Committee to vote NO on these dangerous bills!”. The Not Dead Yet logo is in the center on the bottom of the graphic.

Social Media Templates and Post Ideas

HASHTAGS

Use these hashtags on your posts about S.1384 / H.2381 (MA Assisted Suicide legislation).

#DisCo #CripTheVote #RevUp #NotDeadYet #NotABurden #MurderByMedicine

LEGISLATORS TO TAG

  • 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!

  1. 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.

  2. Did you know that the top 5 most reported reasons for dying by assisted suicide have nothing to do with pain, but with disability-related assumptions? Ableism kills. Disabled people need support, not #MurderByMedicine. Learn more here: https://second-thoughts.org/why-massachusetts-should-reject-assisted-suicide/resources/

  3. Tell legislators on the Health Care Financing Committee that disabled people are #NotABurden . Learn more and take action against dangerous assisted suicide laws here: https://docs.google.com/document/d/1Dhjt4r357omrmvjji3EW_YOdbX_ELHl9/edit?usp=sharing&ouid=112385030863611399223&rtpof=true&sd=true .

  4. 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!

  5. We can protect disabled people from #MurderByMedicine, but we need your help. Tell legislators on the Health Care Financing Committee to vote NO on S1384/H2381! https://docs.google.com/document/d/1jfMcicz2ntaTJL7BKK1Sd8qVTEdGcLGtrWaUdLu0sQw/edit?usp=sharing

GRAPHICS WITH ALT TEXT

Please be sure to alt text your posts so they are accessible! Learn how to add alt text on Twitter, Instagram, and Facebook with this guide.

Please find the graphics and suggested alt text in this folder.

Add Your Voice: Action Guide On Opposing Assisted Suicide In Massachusetts

"death with dignity", assisted suicide, end-of-life options bills, Massachusetts, Our News & Commentary Blog, Second Thoughts, ,

Action Guide: Opposing Assisted Suicide in MA

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.

Sincerely,

YOUR NAME

Introducing NDY’s New Assistant Director/Policy Analyst: Jules Good

Jules Good, New Hampshire, Our News & Commentary Blog

NDY is thrilled to announce that Jules Good is joining our team as Assistant Director and Policy Analyst. This is a new position at NDY established to help implement NDY’s policy priorities at the state and national levels as they affect legislation, regulations, legal cases, and activities of government and health care providers in the areas of assisted suicide and euthanasia, withholding and withdrawal of life-sustaining treatment, futile care policies and more.

Jules Good, a white person with very short red-brown hair, pictured from the chest up, smiling.
Jules Good (they/them)

Jules Good (they/them) is a disability justice activist and policy analyst. They are late-Deaf and multiply-disabled. Jules holds a Master in Public Policy from the University of New Hampshire, and formerly worked as the Relay and Assistive Technology Outreach Specialist with Northeast Deaf and Hard of Hearing Services. They also founded their own organization, Neighborhood Access, which works with communities to help them make their presence and practices more accessible to disabled people. Jules serves as a member of the White House Office of Public Engagement Disability Advisory Council, as well as a member of the Fair Fight Action Disability Council. Jules has worked with nonprofits, state agencies, and private businesses to aid in making their practices and processes more accessible to the disabled community. They are deeply involved in disability justice work both locally in their current home state of New Hampshire, and nationally.

Please join us in welcoming Jules to the NDY staff!

“Jules brings a broad set of skills to NDY’s efforts, including strong social media experience and a crucial ability to communicate with and engage younger disabled people in these life and death issues.” – Diane Coleman, President/CEO, Not Dead Yet

“Our board is thrilled to welcome Jules into this important position where their passion for disability justice issues and nuanced communication skills will help expand the reach of our mission and work.” – Emily Wolinsky, NDY Board Chair

“I am thrilled and honored to be stepping into this role. I have admired NDY’s work for years and look forward to the opportunity to apply my skills and passion in this crucial area of disability policy. I am eager to engage with NDY’s partners and collaborate in building a world where disabled people can not only survive, but thrive.” – Jules Good, Assistant Director/Policy Analyst