JFActivist

Just In: AAPD Joins Facebook Causes

From the JFA Moderator:

AAPD recently joined Facebook Causes as a way to get the word out about the disability rights movement and to make it easier for YOU, our dedicated activists, to contribute your support.

Take Action TODAY: Join or Donate to AAPD's Cause on Facebook and share these links with your friends.

>>> To Join the Movement

>>> To Support our Work

Handicap is NOT a Death Sentence

From U.S.News and World Report (August 10, 2009):

Handicap Is Not a Death Sentence and Should Not Be Treated as One
"Futile" healthcare is in the eye of the beholder, and should be in the hands of the patient
By Laura Hershey

Laura Hershey of Englewood, Colo., is a national advocate for the rights of the handicapped.

When people discuss "end-of-life care," they often invoke scenarios meant to sound ominous: tubes, breathing machines, physical dependency. I'm not scared by those images, having lived for 46 years with increasing reliance on technological and human support. A ventilator aids my breathing. Personal care assistants bathe, dress, and feed me. I operate my wheelchair by blowing into a tube. And my life is far from over. Of course, none of us can know for sure, but I plan on being around for a while.

That plan has not always gone unquestioned. Tactless acquaintances have told me they would kill themselves if they became as disabled as me. More chillingly, the last time I was hospitalized for pneumonia, I had two different nurses ask if I had a DNR—a "do not resuscitate" order. I replied that I had come to the hospital to get better, not to die.

Unfortunately, that expectation of medical treatment can run up against physicians' opposing views and hospitals' rules. In dozens of states, laws allow doctors to unilaterally deny lifesaving treatments that they deem "futile," even if the patient or a surrogate decision maker wants care continued. Some people actually advocate this, as a way to ration healthcare—limiting the resources available to sicker patients, to extend basic care to more healthy people...

Who should make medical decisions? The individual in the hospital bed, with everything at stake? The family, with their complex and sometimes contradictory concerns about love, obligation, and money? The doctor, with a vested interest in achieving rigidly defined "successful" outcomes? Or hospital administrators, with one eye on the bottom line?

The situations that worry me most are those involving different definitions of "futile" and "effective..."

Some prominent bioethicists, seeking easy scapegoats for escalating healthcare costs, increasingly question the value of providing care to people with disabilities, whose lives they (mistakenly) consider undesirable.

>>> For the Full Article

>>> For the Counter-Argument read the case for healthcare rationing from Michael Tanner of the Cato Institute.

Disability Community Denounces Rationing Argument in NYT

From Not Dead Yet (8/14/09):

 

FOR IMMEDIATE RELEASE                                         

Media contact: Stephen Drake, Research Analyst, Not Dead Yet

Not Dead Yet and Coalition Denounce

New York Times Magazine Article

Coalition Sends Letter to NYT Magazine Asking for Dialogue on Disability Issues

 

WASHINGTON, DC – August 14, 2009 – Not Dead Yet, along with more than 40 other disability organizations, including the American Association of People with Disabilities (AAPD), has signed on to a letter to New York Times Magazine Editor Gerald Marzorati denouncing a July 15 article by ethicist Peter Singer.  Singer’s article argued for rationing health care by denying treatments to people with disabilities based on the assumption that our lives have less value than the lives of nondisabled people.

“For The New York Times Magazine to publish an article calling for health care rationing that would discriminate against people with disabilities one week before the anniversary of the Americans with Disabilities Act shows how out of touch the leadership at The New York Times Magazine is,” said Not Dead Yet President Diane Coleman. “Peter Singer is a sloppy ethicist who should not be given a forum by a publication as credible as The New York Times. His piece, published at a key time in the health care debate, gives fodder to critics whose goal is to kill any reform by raising the specter of government supported euthanasia.”

The letter, written by Stephen Drake, Research Analyst for Not Dead Yet, states:

“…This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising. What’s surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion...”

The coalition has requested the following of The New York Times Magazine:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.

2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.

3. Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.

4. Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

To read the letter in its entirety, visit http://notdeadyetnewscommentary.blogspot.com. For more information about AAPD’s views on the Peter Singer piece in The New York Times, please visit www.aapd.com.

Not Dead Yet, 497 State St.,

Rochester, NY 14608

Phone: 585-697-1640; Fax: 585-697-1641; Email: sndrake@aol.com

http://www.notdeadyet.org

IL: Anti-Sterilization Bill Signed Into Law

From Amber Smock, Co-Founder of F.R.I.D.A. (Feminist Response in Disability Activism):

IL: Anti-Sterilization Bill Signed Into Law

Good news!  As of yesterday, Illinois Governor Quinn signed HB 2290 into law.  It is now Public Act 96-0272.  As of today, people with disabilities who have guardians are now protected by state law against unnecessary and unconsented forced sterilization.  The law now says that if a guardian requests sterilization of a ward with a disability, there needs to be a review process and advocate for the person with a disability.  To read about the bill, see http://www.ilga.gov/legislation/billstatus.asp?DocNum=2290&GAID=10&GA=96&DocTypeID=HB&LegID=44195&SessionID=76.

Many thanks to the advocates and groups that worked on this!  The groups include: Equip for Equality, the ACLU, FRIDA, the Cook County Office of the Public Guardian, and many others.  If you want to send a thank you note to the advocacy coalition, you can send it via Cheryl Jansen at cherylj2@equipforequality.org.  I know that this is an issue across our country that concerns many people in many states.

This law stems from several Illinois based advocacy efforts, including an EFE review of sterilization laws in the 50 states and the FRIDA-coordinated campaign on the Ashley X case.  Again many thanks to all of those who fight every day so that people with disabilities can be free of oppression.

Amber

Disability Community Responds to NYTimes Article

From the JFA Moderator: The following letter was composed by Not Dead Yet in collaboration with the JFA Action Network with the first signers listed below. We are seeking additional signers. If you would like to add your signature to this letter to Gerald Marzorati, Editor of NY Times Magazine send your name and email to jfa@aapd.com by 12 noon EST Monday August 10, 2009.

In response to    >>> For JFA Post on ther original NYTimes article

Dear Mr. Marzorati:

Was it the New York Times Magazine’s intention to assault or diminish the basic tenets of the disability community's civil rights law virtually on the eve of its 19th anniversary? The New York Times Magazine’s decision to publish Peter Singer's latest long essay entitled 'Why We Must Ration Health Care' (7/15/09) less than two weeks before the anniversary of the signing of the Americans with Disabilities Act demonstrates either deliberate malice or reckless disregard of the reality of disability as an important demographic representative of nearly 20% of the American population.  

As anyone who has read ‘Why We Must Ration Health Care’ knows, Singer spoke “hypothetically” of assigning a life with quadriplegia as roughly half that of a life without any disability at all.  On this “hypothetical” basis, Singer lays out a case for denying health care to people with significant disabilities on the basis that our lives have less value than the lives of nondisabled people.

This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read.  His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.  

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising.  What’s surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion.

To be fair, the NY Times Magazine has published some excellent articles in the past that have covered the disability experience as more than a mere medical issue.  The late Harriet McBryde Johnson had several thoughtful articles published in the NY Times Magazine describing the historical oppression directed at people with disabilities, contrasted with the wonderful opportunities that unfold if that oppression is lifted.  When Harriet died, many of us were taken aback when the NY Times Magazine editors passed over Harriet’s friends and colleagues to write an end-of-year tribute in the year she died.  That honor was bestowed on Professor Singer.  Perhaps we should have taken that as a sign of things to come.

Reluctantly, we have to suspect that the NY Times Magazine accepted this piece because of its content, agreeing with Singer that our lives have lessened value and that we represent a drain on the collective economic and health care resources of our country.  It’s hard to imagine the NY Times Magazine green-lighting an article that targeted any other group in such a way – e.g. immigrants, the poor, or other groups who have been targeted as scapegoats in the health care debates.  Did the editor in charge of publishing this issue even notice that Singer used no factual information at all to support his devaluation of people with disabilities?  

We have to wonder what went through the heads of the editorial staff when they thought about the reactions of readers – with or without disabilities – to the large graphic that read “__ YEARS OF A NONDISABLED LIFE IS WORTH __ YEARS OF A DISABLED LIFE.”

Contrast this with Senator Edward Kennedy’s essay on the fight for universal healthcare in the current issue of Newsweek.  Talking about people with disabilities he said, in part:

Social justice is often the best economics. We can help disabled Americans who want to live in their homes instead of a nursing home. Simple things can make all the difference, like having the money to install handrails or have someone stop by and help every day.

Obviously, the definitions of justice that Senator Kennedy uses are very different from the definitions favored by Peter Singer and the NY Times Magazine.

Without using the term, Senator Kennedy is also describing the social model of disability.  In the traditional medical model of disability, the “problems” of disability are all situated within the person.  The medical model defines people with disabilities as having a lower “quality of life” than their nondisabled peers.  In reality, most of the limitations put on people with disabilities are socially defined – and can be remediated in the same way.  The Americans with Disabilities Act is built on the principles of that social model, acknowledging that disability is a natural part of life and that society has to reflect that reality in an inclusive and supportive way.

The proposed treatment – or nontreatment – of people with disabilities also violates the UN Convention on the Rights of Persons with Disabilities, which was signed by US Ambassador to the United Nations, Susan Rice.  She signed the Convention on July 30th at the direction of President Obama. While the Singer essay violates the spirit and vision of the Convention in numerous ways, the most pertinent section of the document is spelled out in Article 25 (f), in which obligates signatories to “prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.”  This is important. Article 4(d) states that countries that have signed the Convention agree to “refrain from engaging in any act or practice that is inconsistent with the present Convention.”

The American disability community, Senator Kennedy and an ever-growing majority of the international community all recognize that public policy has to embrace the inherent equality of the lives of people with disabilities – and public policy must reflect that in practice.  The NY Times Magazine and Professor Singer stand opposed to the more progressive voices of social justice, inside and outside of the United States.

We, the undersigned, protest this treatment of people with disabilities within one of the most important public policy debates in our time.  The New York Times Magazine has failed in its public responsibility to treat citizens of the United States with the simple respect we deserve by serving up people with disabilities as a drain on public resources and to legitimize the denial of medical care to those of us who need that support the most.

The editorial staff of the New York Times Magazine needs to meet with representatives of disability advocacy groups, with the following goals:

1.         The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.
2.         If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.
3.         Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.
4.         Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

Urgently,

-ADAPT Chicago
-ADAPT Montana
-American Association of People with Disabilities (AAPD)
-Center for Disability Rights -Disabilities Network of NYC
-Feminist Response in Disability Activism
-Hearing Loss Association of America
-Little People of America
-MetroWest Center for Independent Living
-National Coalition of MH Consumer/Survivor Organizations
-National Association of the Deaf  
-National Center for Environmental Health Strategies
-National Council on Independent Living
-Not Dead Yet
-TASH
-The Autistic Self Advocacy Network
-The Center for Self-Determination
-Topeka Independent Living Resource Center

AK: Gov. Palin's Son, Trig, Center of Online Debate

From the JFA Moderator:

During her announcement that she is stepping down and will not seek a second term as Alaska's Governor, Sarah Palin made the following comments about her son, Trig, who has Down Syndrome:

From the Wall Street Journal (July 3, 2009):

...I think much of it had to do with the kids seeing their baby brother Trig mocked by some pretty mean-spirited adults recently.) Um, by the way, sure wish folks could ever, ever understand that we ALL could learn so much from someone like Trig — I know he needs me, but I need him even more… what a child can offer to set priorities RIGHT – that time is precious… the world needs more “Trigs”, not fewer...

These comments have sparked a flurry of debate around Palin, the Media, her resignation, their coverage and, yes, her children.  For an excellent summary see

Opinions: Were Palin’s children ridiculed?

by Patricia Bauer at http://www.patriciaebauer.com/2009/07/09/opinions-palins-children/

with such comments as

"YES. John Fund in the Wall Street Journal

Everyone in the family was weary of endless personal attacks, including mean-spirited suggestions on liberal blogs that all of her children should have been aborted and that she would run on a presidential platform promoting retardation."

and

Writer: Palin reacting to ‘indecent’ treatment of Trig, Bristol

at http://www.patriciaebauer.com/2009/07/07/palin-kids-mockery/

which reports "Palin’s resignation moved one Erik Nelson to write a Puffington Host post titled “Palin Will Run in ‘12 on More Retardation Platform."

Comment Below: Have you been seeing many comments like these? Do you think the media (mainstream or otherwise) has been cruel a to Trig? What are the best and worst sentiments in this firestorm?

'Empathy' on 1927 Supreme Court might have saved thousands from the knife

From the LA Times (6/4/09):

'Empathy' on 1927 Supreme Court might have saved thousands from the knife
By Michael Hiltzik

One of the great things about Senate confirmations of Supreme Court justices is that they help us develop a long-term perspective on the workings of the highest tribunal in the land.

For instance, when the political fight broke out over Sonia Sotomayor's assertion that a judge's ethnic and socioeconomic background might actually influence how he or she interprets the law, I cracked the history books to find support for that fairly obvious point.

The best illustration turns out to be a 1927 case known as Buck vs. Bell. Or as it might otherwise be known, the case of Oliver Wendell Holmes and the imbeciles.

Holmes, perhaps the most revered of all Supreme Court justices, was always proud of his opinion in Buck vs. Bell, which upheld a Virginia law allowing the forced sterilization of "mental defectives." Yet the terse ruling proclaims, in each of its four chilling paragraphs, the narrow elitism of his personal life experience. And its consequence was tens of thousands of ruined lives over the next half-century.

Before we reconsider Buck vs. Bell, let's review the conservative brief against Judge Sotomayor, who presumably reflected President Obama's stated desire for a justice who would show "empathy."

The attack is based partially on a speech she delivered at UC Berkeley Law School in 2001. Challenging a notion attributed to former Justice Sandra Day O'Connor that "a wise old man and a wise old woman" on the Court should come to the same legal conclusion, Sotomayor said, "I would hope that a wise Latina woman with the richness of her experiences would more often than not reach a better conclusion than a white male who hasn't lived that life."

...She acknowledged that people of "different experiences or backgrounds" are often quite capable of "understanding the values and needs of people from a different group." But she endorsed the view that "in any group of human beings there is a diversity of opinion because there is both a diversity of experiences and of thought."...

Is this really arguable? Is the law a set of immutable principles brought to earth on, say, the wings of heavenly messengers to be decoded robotically by human agents distinguished only by their power of intellect? Or is it a living institution, evolving with society, incorporating an ever broader and deeper definition of American values as the definition of "American" itself becomes broader and deeper? In other words, did Justice Holmes' opinion in Buck vs. Bell reflect basic legal principles or establishment culture?..

...Holmes accepted at face value the state's contention that Buck was "a feeble-minded white woman, . . . the daughter of a feeble-minded mother in the same institution, and the mother of an illegitimate feeble-minded child." Upholding society's interest in avoiding the "transmission of insanity, imbecility, etc.," he produced one of the most infamous sentences in the annals of the court.

"Three generations of imbeciles," he wrote, "are enough."

..."It's hard to believe that one or two women justices might not have made a difference," he told me from his home near the University of North Carolina, where he is a professor emeritus. "They might have made the other justices confront what was at issue."

...We can't condemn Holmes alone for the travesty of Buck vs. Bell. It was an 8-1 opinion... We can, however, take it as a lesson in how time and diversity can transform even an institution as precedent-driven as the Supreme Court. It's impossible to say how Sonia Sotomayor's personal history, much less her "empathy," will play out on the court, assuming she's confirmed. At Berkeley, she didn't predict that a Latina justice would steer the court in any particular direction. And no matter where they stand on the political spectrum, justices have a way of confounding the expectations of their presidential sponsors.

But to deny that the character and experience of judges helps to make law is foolish. Virginia sterilized more than 7,500 men and women before ceasing the practice in 1979 -- second only to California, where 20,000 operations were performed. Nationwide, the toll was 60,000. How many would have been saved, one wonders, had the court showed a little "empathy"?

>>> For the Full Article

Erasing Autism: A Controversial Question

A recent article in Newsweek Magazine summarizes the controversy surrounding Autism Research from the perspective of Ari Ne'eman, Founder of the Autistic Self-Advocacy Network and AAPD Congressional Intern.

Excerpts from Newsweek (May 2009):

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

By Claudia Kalb

... The task [Ari Ne'eman] has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a national conversation about autism without the voices of people who should be at the center of that conversation," he says...

...Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.

I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist...

>>> For the Whole Article

Comment Below: The questions brought up in the Autism controversy and Ne'eman's position are ones that affect many in our  community.  Where do you stand? For a cure to restore a person to full functionality? or for valuing the disability as an integral part of the person as a whole? Are there shades of gray between these two extremes?  What are they for you?  Does it necessarily have to be an either/or scenario? Is it different for different disabilities?

Take Action: End Involuntary Sterilization in Illinois

From F.R.I.D.A. (Feminist Response in Disability Activism) (Feb. 25, 2009):

>>> ACTION STEPS BELOW <<<

End Involuntary Sterilization in Illinois Now!
Fact Sheet on House Bill 2290 (Sterilization of Adults with Disabilities Under Guardianship)

Background

In Illinois, the Probate Act of 1975 outlines the general duties for guardianship of an adult with a disability (i.e., a ward).  However, currently there are no guidelines for when a guardian seeks to have the ward sterilized.  As a result, the involuntary sterilization of people with disabilities can be abused.  It is possible for a guardian to violate a person’s basic right to not be sterilized without knowledge and/or consent.  Most states in the U.S. have due process protections to prevent this extreme, irreversible and dehumanizing situation… but unfortunately Illinois is still one of 16 states lacking any protections against sterilization without consent.

What Has Been Happening without HB 2290

-    One guardian (the mother of the ward) did not seek the court’s authority to consent to her daughter’s involuntary sterilization. The intent of the guardian to have the woman sterilized was discovered when her father received notice that his insurance policy would not cover such a procedure. The father then interceded on his daughter’s behalf.

-    The guardian of a young woman with a traumatic brain injury filed a petition to have her involuntarily sterilized.  The woman had no knowledge of the pending petition, even though she had been using different kinds of contraception successfully for years, and expressed the desire to get married and raise a family one day.

Because Illinois law does not require a guardian to file a petition under these circumstances, many of these cases never come before the court.  Instead, the guardian and the physician make the decision for the ward, without any independent representation or protection of the ward’s interests.

Note: Many parents of adult children with disabilities are not the legal guardians of their children (although they may think that they are), and have NO legal authority to seek sterilization of their adult children.  However, physicians unaware of this fact may agree to do a sterilization based on the parent’s consent, without realizing what they are doing is illegal.

So How Does HB 2290 Address This Problem?

HB 2290 updates the Probate Act of 1975 by adding a new section which says that:
-    The guardian must file a motion requesting the court’s authority to consent to the sterilization procedure (except when a procedure is necessary to save the ward’s life or to prevent harm to the ward);
-    An independent counsel should be appointed if the court finds it best serves the ward’s interest or if requested by the ward, or if the ward objects to sterilization;
-    The court should seek a medical and psychological evaluation of the ward;
-    A determination by the court of the ward’s capacity to consent or not consent to the proposed sterilization:
-    If the ward has such capacity, there must be an entry of an order that respects the ward’s decision;
-    If the ward lacks such capacity, there must be a determination of the ward’s desire regarding the proposed sterilization.  If the ward has not clearly expressed a desire for sterilization, there must be proof of specific factors by clear and convincing evidence;
-    If the court determines the ward lacks such capacity, there must be a determination of the ward’s best interest in accordance with certain standards; and
-    The resulting court order will include written findings of fact and conclusions of law.

TAKE ACTION: So what can you do to help?              

We need this bill to pass the Illinois House of Representatives NOW!

1.  Look up your rep at
http://www.elections.il.gov/DistrictLocator/SelectSearchType.aspx?NavLink=1. 

Right now, we especially want to reach representatives who are on the Judiciary Civil Law Committee
(http://www.ilga.gov/house/committees/members.asp?committeeID=595). 

2. Contact your state representative and ask them to sponsor H.B. 2290 TODAY!

3. If you are with an organization, have your organization join our FRIDA website list to support H.B. 2290! 

Organizations Supporting H.B. 2290: FRIDA, Equip for Equality (special thanks to EFE for providing the information on this fact sheet), and the ACLU of Illinois.

For more information, or to sign onto our list of organizations supporting H.B. 2290, visit www.ourfrida.org, or contact FRIDA member Michelle Robbins at (915) 496-5468 or
free_our_people@yahoo.com. 

New Prenatal Downs Syndrome Tests Raise Concern

Excerpts from the Washington Post (Feb. 26, 2009):

New Safety, New Concerns In Tests for Down Syndrome
By Rob Stein

A handful of biotech companies are racing to market a new generation of tests for Down syndrome, a development that promises a safer way to spot the most common genetic cause of mental retardation early in pregnancy even as it weaves a thicket of moral, medical, political and regulatory concerns...

...With the first new approach due to become available this spring, the tests are renewing questions about why regulators do not require such innovations to be proved reliable before being offered to the public.

Abortion opponents, meanwhile, fear that the technology may prompt more couples to terminate pregnancies. And advocates for the disabled, noting that couples are often poorly informed about the syndrome, worry that more of them may feel pressured to abort. They also fear a dwindling number of those born with the condition, along with the prospect of increased discrimination against them and their families.

"We have a history in this country of a eugenics movement where people tried to eliminate certain people from the gene pool," said Andrew J. Imparato of the American Association of People With Disabilities. "People could start wondering, 'How did you get born?' " ...

...The new tests for Down syndrome come as advocates pressure Congress to fund a law passed last year aimed at ensuring that couples get accurate information about genetic conditions and at providing support for women who decide to keep their affected children or put them up for adoption.

"These tests make this all the more important," said Madeleine Will of the National Down Syndrome Society, which is seeking $25 million over five years to implement the legislation. Society members are gathering in Washington this week to lobby on this and related issues...

>>> For the Full Article