NDY board officer Shonda McLaughlin shared her personal story of discrimination during ADAPT’s celebration of the reintroduction of the Disability Integration Act on Martin Luther King, Jr.’s birthday January 15th. John Kelly, NDY’s New England Regional Director, captured a video of her remarks, which he said “personalize the ‘better dead than disabled’ mindset, and embody the way forward through civil rights and solidarity.” He also captured Anita Cameron’s introduction and call to action in this 5 minute video. For background, see NDY’s press release.
Not Dead Yet’s Director of Minority Outreach Anita Cameron will MC the ADAPT celebration of the reintroduction of the Disability Integration Act (DIA) in Congress on M.L. King’s Birthday, Tuesday, January 15th. Cameron has been an ADAPT organizer and activist for decades and has the distinction of having been arrested for nonviolent civil disobedience for disability rights more times than any other disability activist in the nation.
NDY Board officer Shonda McLaughlin will speak on behalf of Not Dead Yet at this public event. Senator Schumer, Senator Bob Casey, Senator Cory Gardner and Representative Jim Sensenbrenner have confirmed that they will speak, along with representatives of leading disability rights and seniors organizations that are joining together to advance the DIA.
“This bill is vital to seniors and people with disabilities,” said Cameron. “DIA ensures that people can live in freedom in our communities rather than being forced into nursing facilities and other institutions. It is bipartisan legislation that has a real chance to pass in this Congress.”
The celebration event will be held on January 15, 2019, from 3 – 4pm ET at the Capitol Visitors Center Room SVC 202-3 in Washington, D.C., and will be simulcast on National ADAPT‘s social media.
The Disability Integration Act is civil rights legislation. The bill ends what disabled activists have long called “the institutional bias” by requiring that any public or private insurer offering long term supports and services must make them available in a community setting rather than only in institutions and nursing facilities.
In the last session, DIA was introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House. The legislation builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services as an alternative to institutionalization.
Much of the excitement over the reintroduction comes from the feeling that DIA’s time has come. “The midterm elections changed everything. With Dems taking over the house, there is a real opportunity to pass the bill on the House side this year” said Kelly Buckland, Executive Director of the National Council on Independent Living. “As someone who uses attendant services and has spent time in a nursing facility, I can’t begin to express how exciting it is that this is finally going to happen.”
It is not a coincidence that the celebrations and the reintroduction are taking place on January 15th, Dr. Martin Luther King Jr.’s birthday. The Disability Rights movement has deep ties the Civil Rights leader and has long marked the day as Freedom Day.As Cameron has previously written, explaing the solidarity between ADAPT and NDY, DIA “would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in institutions.”
Not Dead Yet opposes the legalization of assisted suicide and strongly supports DIA because it addresses many of the reported concerns of people who request assisted suicide by assisting people to live at home, for whatever time they have, rather than assisting them to die.
NDY’s Director of Minority Outreach Anita Cameron is leading ADAPT’s organizing efforts for the reintroduction of the Disability Integration Act (DIA) in Congress on M.L. King’s Birthday, Tuesday, January 15th. Anita has been an ADAPT organizer and activist for decades and has the distinction of having been arrested for nonviolent civil disobedience for disability rights more times than any other disability activist in the nation. We’re truly proud that she will MC the program.
NDY Board officer Shonda McLaughlin will speak on behalf of NDY at this public event. Senator Chuck Schumer, Senator Bob Casey, Senator Cory Gardner and Representative Jim Sensenbrenner have confirmed that they will speak, along with representatives of leading disability rights, seniors and civil rights organizations that are joining together to advance the DIA. These include, among others, Bruce Darling (ADAPT), Kelly Buckland (NCIL) and Vanita Gupta (Leadership Conference on Civil and Human Rights).
Below is the event invitation and more information about the bill and why it is so important to NDY. The event will be simulcast on National ADAPT’s social media.
You are cordially invited to celebrate the reintroduction of the Disability Integration Act, with colleagues and Disability Rights Activists. Reception to follow. January 15, 2019, 3 – 4pm ET, Capitol Visitors Center Room SVC 202-3 Washington, DC. ASL & CART & Spanish provided.
Note: If you are attending in person @uscapitol in DC for #FreedomDay2019 01/15/19 at 3pm EST please email first and last names to DCMetroADAPT@gmail.com by 12pm (EST) Monday, 01/14/19 to get on the admission list.
The Disability Integration Act is civil rights legislation. In the last session, DIA was introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House to address the fundamental issue that people who need Long Term Services and Supports are forced into institutions and denied their basic civil rights. The legislation builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services as an alternative to institutionalization.
As Anita has previously written, DIA “would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in institutions. It addresses many of the concerns of those who would feel they have no option but assisted suicide by assisting people to live, for whatever time they have, rather than assisting them to die.”
People sometimes wonder if the subjects Not Dead Yet deals with get us down. But the reality is that you lift us up – every time you share the message that we are NOT “better dead than disabled,” every time you fight for the healthcare and supports we need, every time you prove our inherent DIGNITY by fighting the indignities society too often heaps upon all the beautiful, proud disabled people we are. Thank you for all the forms of support you have given and please take comfort in knowing you have helped save lives.
If you are still looking to make a year end donation, please consider Not Dead Yet by going here. Wishing you love, peace and justice in the new year!
Photo of John Kelly, above the waist, middle aged white man with plaid shirt, glasses and sip-and-puff switch to operate his motorized wheelchair.
In a recent Wicked Local Lexington commentary (“Medical aid in dying important for some with disabilities,” Sept. 28), Michael Martignetti argues for the legalization of assisted suicide from the perspective of someone with the progressive neurological disability, Friedrichs ataxia. I can relate to the author’s disability experience, as 35 years ago a spinal cord injury left me paralyzed from the neck down. Like Martignetti’s, my disability will present challenges as I age.
But whereas Martignetti frames assisted suicide as a personal choice in the face of “unbearable suffering,” I see a state-run program that will result in people losing their lives to misdiagnosis, treatment denial, and coercion/abuse, and depression. Not all families are united in loving and supporting us.
Doctors often make diagnostic mistakes: between 12 percent to 15 percent of people admitted to hospice as “terminally ill” outlive the six-month prediction. Many more who never enter hospice also outlive their diagnosis. For example, the late Senator Ted Kennedy lived a full year longer than his diagnosis of 2 to 4 months, while Florence resident John Norton credits 60 years of good life to the unavailability of assisted suicide after a mistaken prognosis.
Late last year, the Oregon Health Authority explained that people can become “terminally ill” through insurance denial and unaffordability. For example, Nevada Dr. Brian Callister had two patients denied by California and Oregon insurers for what used to be routine, lifesaving, operations. The insurers only offered the “choice” of hospice or assisted suicide. It’s impossible to talk about individual choice when profit-maximizing companies can – with no accountability – make you terminal.
The Health Authority admits its involvement ends with the dispensing of the drugs by the pharmacy. Of the many reported abuses, see the cases of Thomas Middleton (financial abuse), Wendy Melcher (attempted murder of a trans woman), and Kathryn Judson (physician pressure).
The bill requires no independent witness at the death, so the supposed safeguard of “self-administration” is empty. Especially vulnerable will be the 10 percent of Massachusetts seniors estimated to be abused yearly. A caregiver or heir to an estate can witness a person’s request, pick up the prescription, and then administer the lethal dose without worry of investigation — the bill immunizes everyone involved.
Another safeguard requires applicants to be evaluated by a mental health professional, who in a one-time meeting is tasked with “determining that the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.” A survey of psychiatrist revealed that most said they could not diagnose depression in a single visit. Meanwhile, “impairing judgment” is what depression does. As peer advocate Ruthie Poole has testified,
“Depression does not cause black and white thinking; it causes black and blacker thinking. Absolute hopelessness and seeing no way out are common feelings for those of us who have experienced severe depression. Personally, as someone who has been suicidal in the past, I can relate to the desire for ‘a painless and easy way out.’ However, depression is treatable and reversible. Suicide is not.”
Martignetti insists that disability does not make people eligible, but the Oregon reportsshow that the 5 leading “end-of-life concerns” are not pain-related but the “existential distress” (New England Journal of Medicine) experienced through “loss of autonomy” (91%), lost abilities (90%), “loss of dignity” (76%), incontinence (46%), and feeling like a burden (44%).
Indeed, I have found that social prejudice and discrimination are far more injurious than the actual loss of abilities. People have told me to my face that they would rather be dead than like me, while the culture promotes a theme of “better dead than disabled.” Movie examples include “Me Before You,” “Whose Life Is It Anyway,” and “Million Dollar Baby.”
This helps explain why every major national disability rights organization that has taken a position on assisted suicide has come out in opposition.
The legislature should continue rejecting a bill that trades on disability prejudice to push vulnerable people toward early deaths.
– John B. Kelly is director of Second Thoughts Massachusetts: Disability Rights Activists Against Assisted Suicide, a grassroots group opposing assisted suicide since 2011.
Not Dead Yet Leaders To Speak At Disability Integration Act Reintroduction on M.L. King’s Jan. 15 Birthday
NDY’s Director of Minority Outreach Anita Cameron is leading 
NDY Board
You are cordially invited to celebrate the reintroduction of the Disability Integration Act, with colleagues and Disability Rights Activists. Reception to follow. January 15, 2019, 3 – 4pm ET, Capitol Visitors Center Room SVC 202-3 Washington, DC. ASL & CART & Spanish provided.
