New Mobility Highlights “2016 People of the Year: The Resisters”

Few in the disability community would argue about 2016 being a hard year – assaults on the Americans with Disabilities Act, assaults on our access to education, assaults on safety nets many of us rely on – and of course – assaults on our right to dignified lives in the form of policies and rhetoric that suggest the only “dignity” old, ill and disabled people can find is through our voluntary suicides.

New Mobility‘s article “2016 People of the Year: The Resisters” by Josie Byzek highlights the activivists/organizers who took on some of the high-profile “better dead than disabled” issues last year. Here’s the opening paragraph:

Activists with Disabilities Fight Back Against the Forces of ‘Better Dead than Disabled’

From the movie Me Before You to the untimely deaths of 5-year-old Julianna Snow and 14-year-old Jerika Bolen, our society’s message of “Better Dead than Disabled” is as insidious as ever. Those disabled activists who resist this message are often met with scorn, even death threats, yet they stay strong in their fight to defend the lives that are so often devalued by others. This year, we are breaking from our tradition of naming one Person of the Year to instead honor the activists who we are collectively calling The Resisters: Carrie Ann Lucas, TK Small, Emily Wolinsky, Diane Coleman, Dominick Evans, Tari Hartman Squire, Ellen Stohl and so many more. Lead on!

Please go to New Mobility and read the entire story.

(Editor’s note: New Mobility is an important asset to the disability community. If you like what you read, consider taking advantage of one of the magazine’s subscription options.

 

Not Dead Yet and Respecting Choices Announce Successful Collaboration

Not Dead Yet and other disability advocates and rehabilitation physicians have worked with Respecting Choices, a national leader in the field of advance care planning, to develop fact sheets on feeding tubes and breathing supports. Today, they announce the results of an over two year collaborative effort.

The project began following an open letter from disability advocates dated December 2013. According to the letter, previous versions of the documents expressed a strong bias against long-term use of feeding tubes, BiPAPs and ventilators, potentially discouraging health care consumers and medical professionals from using these life-sustaining devices except for short-term recovery and not as part of a viable disability lifestyle. The Not Dead Yet open letter was signed by over thirty disability organizations as well as twenty-five individuals who have successfully used one or more of these devices for years, and in some cases for decades.

In response to the letter, Respecting Choices began a dialogue with disability advocates, which led to a productive exchange and, ultimately, to substantially revised fact sheets on feeding tubes and breathing supports. These documents are intended to provide consumers, as well as legal and medical advisors, important information for health care decision-making and advance directives.

A formal joint announcement is below and can also be viewed online on the Respecting Choices website, and the revised fact sheets are online (feeding tubes, breathing supports) and available for purchase from Respecting Choices.

Dear Colleagues:

In December 2013, a number of disability organizations and individuals jointly expressed their concerns about two healthcare decision-aids created by the Respecting Choices® program. One of these decision aids focused on the use of medical nutritional support for those with serious illness and the other focused on breathing support for those with serious illness. The concerns expressed were that these decision aids were incomplete and biased or misleading, and could result in uninformed decisions and harm to people with disabilities, including loss of life.

Once these concerns were expressed, the leaders of Respecting Choices recommended that representatives from Respecting Choices and these disability advocates work together to consider improvements to these two decision aids. This work was complicated and required an over two-year effort to form a balanced committee and exchange information and perspectives, as well as considerable back and forth dialogue concerning language to ensure effective communication.

The result of this work and collaboration, however, has been the development of two revised decision aids that address the concerns of both the disability advocates involved and the person-centered standards of the Respecting Choices program. We hope that these revised and improved decision aids will help all patients make better informed decisions about when medical nutritional and breathing support will and will not be helpful depending on the individual’s medical condition and goals.

We also hope that this process of collaboration will serve as a model of cooperation between healthcare professionals and disability or other diverse groups when they have differences, especially in the field of healthcare decision-making and advance care planning.

We want to express our thanks and appreciation to all those who contributed to this effort including Linda Briggs, MS, MA, RN, Dr. Carol Gill, Ph.D., Dr. Kristi Kirschner, M.D., Cathy Ludlum, Stephen Mendelsohn, Sandra E. Schellinger, MSN NP-C, and Dr. Lisa Wolfe, M.D.

Sincerely,

Diane Coleman Bernard “Bud” Hammes
President
Not Dead Yet
Director
Respecting Choices

John Kelly’s Letter Published in the Cape Cod Times

Not Dead Yet New England Regional Director John Kelly sent a letter to the editor last week after the Cape Cod Times published Rabbi Elias Lieberman’s opinion piece promoting legalized assisted suicide.

In the lead up to the 2012 referendum on assisted suicide, Rabbi Lieberman invited John to take part in a panel discussion about assisted suicide before his Reform congregation. Lieberman stacked the panel with four proponents of assisted suicide, and after a review of the long-standing Jewish teaching against assisted suicide, added his own support for the referendum. The referendum, known as Question 2, went down to defeat because of the strong turnout of people of color, historically opposed to assisted suicide.

Just as he did at that panel discussion, John’s letter uses some of Not Dead Yet’s main arguments against assisted suicide: that it leads to innocent people losing their lives because of misdiagnosis, coercion, and abuse, and because of bottom line decisions by insurers. Because of space limitations, John did not address the issue of “unacceptable suffering,” which relates not to uncontrolled pain but mental distress about the disabling aspects of people’s serious illnesses. For a more in-depth look, please see Not Dead Yet President/CEO Diane Coleman’s recent analysis of the Oregon assisted suicide program data.

The Cape Cod Times published John’s letter in its November 28th edition. Here it is:

To the Editor:

Proponents of legalization like Elias Lieberman (My View, 11/16) present assisted suicide as a fairytale in which doctors can predict the future and everyone wants the best for you.

In the real world, legalized assisted suicide inevitably leads to the tragic deaths of innocent people, through mistakes and abuse.

Every year nationally, thousands of people prove doctors wrong by outliving their mistaken terminal diagnosis. Every year in Oregon and Washington, doctors prescribe suicide for people who are not terminally ill. You may have months, years, or decades of life left, but with assisted suicide it takes just one mistaken doctor and their colleague to put you in the ground.

One out of every 10 older adults is abused every year, mostly by adult children and caregivers. Someone in line to inherit your estate can help sign you up, pick up the prescription, and then take action against you. No witness is required at the death, so who would know?

Insurers always cover assisted suicide because it’s the cheapest “treatment.” Meanwhile, they routinely deny seriously-ill people medical treatment prescribed by their doctors.

Let’s protect innocent people like ourselves from a law that could send us to our early deaths.

John B. Kelly
Director
Second Thoughts MA: Disability Rights Advocates against Assisted Suicide

Mary’s Killer Cocktail: Recipe for Legalized Euthanasia in D.C.

The diverse D.C. coalition against assisted suicide, NoDCSuicide.org, has come up with an infographic showing the abject failure of the D.C. assisted suicide bill to protect people from the dangers of mistake, coercion and abuse. The bill doesn’t even casually mention, much less require, self-administration of the lethal drugs, making it the most clearcut active euthanasia (legalized homicide) bill ever to receive serious legislative support in the U.S. Please go to the coalition website and share this important infographic, calling on Mayor Bowser to veto the bill (social media sharing options are included). Scroll down for a text version of the infographic.

bad-recipe-infographic

A BAD RECIPE FOR D.C.
“Mary’s Killer Cocktail” – B21-38
Serves none

From the Kitchen of: Council Member Mary Cheh (Ward 3)

Photo of red liquid in a glass splashing droplets upward

INGREDIENTS

1 Patient with unaddressed fears of advanced illness.

1 Greedy heir (may substitute with an abusive caregiver).

2 Doctors referred by Compassion and Choices.

2 Witnesses who don’t know patient but check ID, then certify “no coercion.”

1 Prescription for lethal drugs, dissolved in water.

DIRECTIONS

  1. Combine all ingredients.
  2. Stir in profit-driven healthcare.
  3. Strain out any self-administration requirement.
  4. Add in record-keeping shrouded in secrecy.
  5. Add additional hollow safeguards to taste.

TELL MAYOR BOWSER WE’RE NOT INTERESTED IN “MARY’S KILLER COCKTAIL” AND TO VETO THE BILL!
Web: eom@dc.gov – Phone: (202) 727-2643
noDCsuicide.org
#wrong4DC

Two Disability Statements Issued After the Election of President-Elect Trump

[Editor’s Note: Not Dead Yet is one of 15 national disability organizations on the Steering Committee of the National Disability Leadership Alliance (NDLA). NDLA’s statement below reflects our solidarity and commitment to the broad diversity in the disability community. ADAPT is another member of the NDLA Steering Committee, and issued an Open Letter to President-Elect Trump about key disability rights issues, including opposition to legalizing assisted suicide.]

Statement from the National Disability Leadership Alliance on Solidarity and the 2016 Presidential Election 

Following a truly historic election, we find ourselves facing an unknown future. Despite a great deal of speculation, we know very little about President Elect Trump’s intentions toward our community. What we do know is that the important issues that concerned us prior to the election are still there. In the coming months, there will be many attempts to dissect this election. There will also be efforts made to work with the Republican White House and Congress. What we cannot do is abandon our core values including recognition of the diverse and intersectional nature of our community. Doing so would divide and weaken us.

The Disability community has grown stronger this election cycle. We are better organized; we have built thicker networks with strong alliances. Social media campaigns like #RevUp & #CripTheVote have mobilized many who have not traditionally participated in disability activism/advocacy. We have done all of this by embracing our diversity and by working with other justice movements, not against them. While some might be tempted, it would be reckless to take a path of chasing power at the expense of the erasure of so many in our community. We cannot go back to that all too recent past in which we thoroughly ignored and excluded the voices of disabled people who belong to multiple communities. Disabled people of color and Disabled LGBTQIA people are not tangential parts of our community; they are us.

Disabled people live in every corner of our society and for our work to have any meaning it must represent all of our interests. There is no victory in clawing for a smaller piece of a diminishing pie.  We must continue to fight for the constitutional and civil rights of ALL disabled people.  Beyond that, we must fight for justice for all.  We cannot for one second forget that our diversity is our strength, and unity is essential to our cause.

ADAPT’s Open Letter to President-Elect Trump

President-Elect Trump,

The Disability Community is a diverse community made up of people from different races, faiths, political beliefs, and backgrounds.  Our community is the only inevitable minority: if a person lives long enough, they will eventually become disabled. Therefore, our interests are not partisan, but human; not political, but practical. We want all people with disabilities to enjoy the rights and opportunities that make America great and to have better, brighter futures for ourselves and our families. It is our hope that under your Presidency, the Disability Community will partake in a more equal share of the prosperity and freedom that is the promise of America. Accordingly, we ask for your support for some critically important policies which affect our community and our daily lives.

Protect our freedom and liberty.

The Constitution, in two places, guarantees that Americans have the right to live in freedom, but disabled Americans have never enjoyed that Constitutionally-protected right, because in many states and for many years, the services that disabled people rely on are only available in institutions. This institutional bias has prevented people with disabilities from participating in the social, economic, and cultural life of our great nation. The institutional bias has been enshrined in law from the beginnings of Medicaid, and private insurers have followed suit, even though the cost to provide services to people with disabilities in the community is on the aggregate less than the cost to provide those services in an institution.

Our community has advocated before Presidents and Congressional leaders of both parties for decades. We have called on Republicans and Democrats to overturn the institutional bias and secure our Constitutional right to live in freedom. We have found allies on both sides of the aisle to support initiatives and legislation which do this, most recently in the form of the Disability Integration Act, which was introduced by Rep. Gibson (R-NY) and cosponsored by Rep. Sensenbrenner (R-WI) in the House this past year. You can be the President who secures for our community the Constitutional right to live in freedom by calling on Congress to pass the Disability Integration Act.  Even without the support of Congress, as President, you can still use the power of the Department of Justice to enforce our right to community integration, as affirmed by the Supreme Court’s Olmstead decision, so that disabled Americans are no longer denied their birthright of freedom.

Protect our lives.

At present, there are efforts to legalize physician assisted suicide. The Disability Community is strongly opposed to this policy change which will open the door for people with disabilities to have their lives ended by mistake, coercion, or abuse. We are glad to have found strong allies in the Republicans who oppose assisted suicide, and for the inclusion of that opposition in the 2016 Republican Party Platform. We are counting on you as President to refuse to sign any legislation making assisted suicide legal, to refuse to appoint to the Supreme Court Justices who support legalizing assisted suicide, and to ensure that our nation’s commitment to suicide prevention includes old, ill and disabled people.

Assure access to vital healthcare services.

You have called for repealing and replacing the Affordable Care Act (ACA) and for reforming Medicaid. Whatever form that repeal, replacement, and reform may take, the Disability Community strongly urges you to consider that many of our lives literally depend on services provided and paid for through Medicaid or on benefits guaranteed through the ACA. Protecting these services for people with disabilities is critical to ensuring that America does not let our elderly and disabled citizens suffer and die of neglect. The ACA established new health care protections.  It encourages disabled people to work and utilize private insurance by ensuring that people with pre-existing conditions can receive health care coverage like every other hard working American.  The ACA also established critically important services for disabled Americans – including the Community First Choice Option. These provisions must be maintained.  We strongly urge you to avoid using block grants for Medicaid. The use of Medicaid block grants will further disrupt the services and supports which people with disabilities rely on, with the result that a disabled person’s ability to exercise their Constitutionally-guaranteed right to liberty is dependent not on the Constitution but rather on their state of residence and that state’s implementation of Medicaid. Our liberty is a fundamental right: it must not and cannot be left to the states to decide whether to support the Constitutional rights of disabled people.

Eliminate discriminatory ableist standards in federal labor law.

Many in the Disability Community have been denied the right to receive a fair wage for our work because an exemption to Federal law allows certain organizations to pay people with disabilities less than the Federal minimum wage. In their 2016 Party Platforms, both the Republican and Democratic parties called for the repeal of this exemption, section 14(c) of the Fair Labor Standards Act. Data from the state of Vermont, which prohibited the use of the 14(c) exemption in 2002, demonstrates that people with disabilities are more productive workers and require less services when we work in integrated settings which treat and pay us as equals.

Protect the rights of Americans with disabilities.

In the twenty-six years since the Americans with Disabilities Act was passed, there have been multiple attempts to repeal or restrict the equality which the ADA ensures for our community. One of those attempts is likely to return in the next Congress under the name ADA Education and Reform Act. That bill obstructs the protections afforded disabled people under the ADA by imposing additional notice requirements. It is more than a quarter of a century since the ADA was passed. Our community believes that 26 years is more than enough notice for businesses to be made accessible. The ADA was the signature and lasting domestic policy achievement of President George H.W. Bush: you can extend and add to the Republican legacy of support for disability rights by promising to veto this bill or any bill like it.

A dangerous bill that is aimed at eliminating the rights of people with mental health disabilities is likely to return in the next Congress. The Helping Families in Mental Health Crisis Act is a bill which treats people with mental health disabilities as human chattel, stripping our Constitutionally-protected rights to privacy and due process, and imposing coercive involuntary “treatment” regimes which are in many cases, prison by a different name. This bill is an assault on the Constitutional freedoms which you have said you hold dear, and we call on you to be our strong ally in opposing this bill or similar legislation.

Stop the torture of disabled Americans.

Finally, our Constitution bans the federal government from imposing cruel or unusual punishment on criminal defendants, yet we currently allow private institutions to impose such punishments on disabled individuals. The Judge Rotenberg Center is the only facility in the nation that uses electric shocks on disabled people under the veil of “therapy.” The shock devices used by the Judge Rotenberg Center are made on site and are made to give shocks that are stronger than that of a police taser for behaviors as insignificant as getting out of a chair without permission. This treatment of disabled Americans – which an FDA panel recommended banning two years ago – is inhumane and unacceptable. You can end this unwarranted torture that the previous administration failed to address by banning the use of electric shocks in the Judge Rotenberg Center.

As a candidate, you boldly established your own agenda, cutting through the political rhetoric to speak directly to Americans who have felt left out and forgotten by the political process. In your victory speech, you pledged to every citizen of our land that you will be a President for all Americans. You promised to bring Americans together as one united people.  When you take office, you will have the power to follow through on that promise and forge a new politics that breaks with partisan gridlock and includes every American. You can ensure that Americans with Disabilities have the opportunity to realize our fullest potential and no longer be forgotten and disregarded by a political culture war that must end.  ADAPT formally requests the opportunity to meet with you and key representatives from your transition team/incoming administration so that we can get to work on this immediately.

The ADAPT Community

http://www.adapt.org/main.trump