Letters: March 2015 – New Mobility

DaSilva: Artist, Ambassador
Historically, disability stories haven’t been told well in film. More often than not, they’re informed by fear rather than reality and the perspective is one of an outsider looking in. Jason DaSilva’s work [“ opens in a new windowJason DaSilva, NEW MOBILITY Person of the Year: Documenting Life, Finding Joy,” January 2015] has helped erect an important cinematic bridge between the typically non-disabled perspective to that of “the new normal” a recently disabled person faces. Unknown, sometimes scary, sure, but with Jason, never overwrought. Filmmaking is art, not therapy, and DaSilva knows this. He’s managed to communicate the understandable trauma of his diagnosis without drowning the transition in the pathos we’re sadly accustomed to seeing. That’s significant. And, for filmmaking, strangely fresh.

DaSilva may not have sought membership in the disability community, but we’re lucky to have him. And the skillful way he applies his craft. As his story has evolved, so has his storytelling. The disability community would be hard pressed to find a better ambassador.
Lawrence Carter-Long
Founder/Curator, the disTHIS! Film Series

Quad Loses Attendant Care
Thank you for sharing Jenny Weast’s story [Bully Pulpit, “ opens in a new windowPenalized for Working,” January 2015]. The reality of Jenny’s life is more than most people could handle. She has a strong and dedicated spirit to live a life almost taken from her. She is a positive role model to all who come in contact with her. Her life demonstrates that no matter the circumstances you can do good, be a productive member of society and contribute to the lives of others. It is disgraceful that our government system forces people with disabilities to live in poverty and confinement. I have known Jenny for 52 years. She is my big sister and it frustrates all of us beyond belief that she is having to deal with the injustice of a broken system. I know some “take advantage” of the system, but this lady does not, and we pray that a resolution will happen soon so she can focus her attention back on her students and those she can be an inspiration to.
Alison Long
Via newmobility.com

Senseless Discrimination
Thank you for bringing more light to this situation [“ opens in a new windowPenalized for Working”]. This is discrimination against those with disabilities. Jenny Weast must live in poverty to have caregivers? Jenny is making her way, paying taxes and changing lives. Let her keep working hard and forging her way as she has been.
Gretchen Davidson Maccoux
Via newmobility.com

I Could Lose It All, Too
I am a C4-5 quad living in Missouri who has to turn down raises so I will not lose my morning/evening attendants. Those I have only get minimal pay, so it’s hard just to find a PCA. But my state government keeps changing the rules, lowering my amount of daily/weekly hours to the point where I can’t find anyone willing to work for me. I got a degree in engineering, worked for 20 years, have a family, and now I could lose everything.
Mike V.
Via newmobility.com

Poster Child
I’m an older person who also had juvenile rheumatoid arthritis [“ opens in a new windowPoster Child Has-Been,” January 2015]. Interesting to hear the experience of one of the poster children. Glad to hear the author made a good life for herself.
Pat Danielson
Via newmobility.com

My Pain Med Rx
I suggest straight (non-toxic) codeine sulfate to eliminate toxic acetaminophen (Tylenol) found in most pain pills [“ opens in a new windowControlling Your Opioids,” January 2015]. Just request more, to make up for codeine’s weakness. For me, prescriptions of 180 mg total daily of codeine and 12 mg daily of cannabidiol has replaced strong and toxic meds like Norco and Tylenol 4. It’s always a balancing act. Too much pain relief gives a false sense of ability that can lead to overdoing it, which can cause long-lasting discomfort, or potential damage, depending on the circumstances. Don’t be afraid of pain, and don’t be afraid to use painkillers responsibly.
JB Abajian
Via newmobility.com

Frank Lloyd Wright Home
Heated floors, wide openings, light bright rooms with windows where a person can enjoy the view no matter if standing or seated? It would be very interesting to visit this historic home [“ opens in a new windowAccessible Living Before Its Time,” January 2015].
Mary Mullenax
Via newmobility.com

Parking Ticket Immunity
Back in the 1980s I confronted a United States senator illegally parked in a handicap space in front of the East Wing of the National Gallery of Art in Washington, D.C. He tried to offer the excuse that he always voted in favor of bills that assisted people with disabilities. When I failed to accept his faulty reasoning, he just ignored me, got in his car and drove away.

Members of Congress have a special office of the Capitol police that fix any traffic or parking tickets they receive. Their excuse for this waste of taxes is that it is justified by the separation of powers principle in the Constitution, since law enforcement is an executive function, and Congress must be free of local law enforcement so they can do their jobs without intimidation. Not only do they violate accessible parking spaces with impunity, but they also do so with immunity!
Jimmy Collins
Waipahu, Hawaii

EDITOR: The following letters, written by activists who oppose physician-assisted suicide, were submitted in response to an earlier letter by Compassion & Choices founder Barbara Coombs Lee [“ opens in a new windowHugh Gallagher Supported ‘Death With Dignity,’” December 2014]:

Assisted Suicide Abuses
Barbara Coombs Lee brags that the Oregon assisted suicide law has never triggered a prosecution for abuse. She should know! Her [Oregon] law granted every participant in assisted suicide the unassailable defense of “good faith.” But lack of prosecution does not prove lack of abuses.

Kate Cheney was found by doctors — not once, but twice — to have dementia and a daughter coercing her toward death. Reporter Erin Hoover Barnett depicted Kate Cheney as a woman who apparently felt she had no other choice than to suffer in a nursing home or take the lethal dosage her family offered [Oregonian, “A Family Struggle: Is Mom Capable of Choosing to Die,” October 17, 1999]. The very same day she returned from a respite stay — respite for her family — in a nursing home, she reportedly told her family that she would take the poison. She was dead that afternoon.

In direct violation of Oregon’s assisted suicide protocols, a pair of nurses illegally “assisted” in the death of Wendy Melcher. The only sanctions meted out to the nurses were brief probations handed down by the state nursing board.

And Tami Sawyer is now imprisoned for her crooked real estate transactions but not her assisted suicide violations, based on “charges of criminal mistreatment and theft as a result of a state charge that she stole more than $50,000 after a man who suffered from Lou Gehrig’s disease moved into her home, named her his estate trustee, deeded his home to a trust, and then died by physician-assisted suicide.” The day after Thomas Middleton died in her home, Sawyer deposited $90,000 in an account. The Oregon Health Division did not investigate, lacking the authority and resources to do so.

These are just three cases involving abuses that are not revealed in the official Oregon assisted suicide reports, but were uncovered by media and researchers. In fact, the reports seem mostly designed to hide abuses in a law that does little to prevent them.
Diane Coleman, JD, MBA
President/CEO, Not Dead Yet

What Price “Dignity”?
Barbara Coombs Lee has some nerve offering NEW MOBILITY’s disabled readership “Death with Dignity.” She never defines the word “dignity,” nor do any of the bills she has written or championed. And yet 81 percent of people who have died under Oregon’s assisted suicide program reportedly complained of “loss of dignity.”

“Dignity” appears to unite the other “end-of-life concerns” in one easily understood word. People frightened of “losing autonomy” (91 percent); who feel “less able to engage in activities making life enjoyable” (89 percent); fear “losing control of bodily functions” (50 percent); and who may feel like a “burden on family, friends/caregivers” (40 percent) turn to assisted suicide to protect their “dignity,” which simply means “the state or quality of being worthy of honor or respect.”

The independent living and disability rights movement, the Americans With Disabilities Act, and the Olmstead decision all affirm the inherent dignity of disabled people, regardless of notions of our abilities or whether we need physical assistance in daily tasks or are continent every hour of the day.

Coombs Lee trumpets the success of her law and obviously approves of people freaked out by their disabling condition or illness committing suicide. Many of us, especially those of us who acquired disability after thoroughly enjoying our pre-disability status, know these feelings all too well.

We thank our communities, including the NEW MOBILITY community, for recognizing and promoting our inherent dignity against such death wishes, whether internalized or from medical professionals or the larger society.

That’s why I disagree with NEW MOBILITY’S decision to take an advertisement from Compassion & Choices, because it literally promotes a “better dead than disabled” mindset. Free speech is one thing, but you don’t invite the person who thinks you are better off dead to your party.
John B. Kelly
Second Thoughts Massachusetts

Coombs Lee Hypocrisy
Barbara Coombs Lee, president of Compassion & Choices and the leading American proponent of legalized assisted suicide, tells readers that “Compassion & Choices abhors discrimination against people with disabilities based on cost or any other reason — by the insurance industry or any other entity.”

But after Oregon Medicaid offered cancer patients Barbara Wagner and Randy Stroup assisted suicide while denying coverage for the expensive cancer drug Tarceva, Coombs Lee wrote an op-ed defending cost-based discrimination. It is no coincidence that Coombs Lee was an HMO executive when she helped to create Oregon’s assisted-suicide law.

She compliments NEW MOBILITY for running her organization’s advertisement even though the staff is divided on the issue. When she is out promoting her cause, however, she shows no such evenhandedness to her disability opposition. In a recent signed fundraising appeal to her mailing list, Coombs Lee falsely charged that “today, misguided anti-choice zealots drive even harder to steal our right to self-determination.”

And as for the “choice” of people with cognitive decline or dementia supposedly ineligible for assisted suicide under current bills, Coombs Lee recently told a Connecticut audience: “It is an issue for another day but is no less compelling.”

Coombs Lee is a consummate publicist, and a deadly threat to the disability community.
Cathy Ludlum
Manchester, Connecticut

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