JFActivist

Making God More Accessible

From the Wall Stree Journal (9/3/09):

Making God More Accessible
By MARK I. PINSKY

The television commercials were disturbing: Traditional-looking churches barring or physically ejecting racial and ethnic minorities, gay couples—and people with disabilities. One tag line was "Jesus didn't turn people away. Neither do we." The national campaign, which aired several years ago, was sponsored by the liberal United Church of Christ. "We included people with physical disabilities in these commercials—in a wheelchair or with a walker—as an extension of the call and hope that churches would be intentionally inclusive of 'all the people,'" said the Rev. Gregg Brekke, a spokesman for the denomination.

Instead, the imagery provoked grumbling from some denominations because of its implied critique of other church traditions. But at least when it came to the physically handicapped, the criticism had more than a grain of truth. Churches, synagogues, mosques and temples are places where people with disabilities might not expect to feel excluded, isolated or patronized. Yet that has often been the norm. For years congregations have effectively excluded the disabled from worship—by steps, narrow doorways and straitened attitudes—or segregated them in "special" services. Houses of worship (except those with more than 15 employees) were excluded from the 1990 Americans with Disabilities Act, which, among other things, bars discrimination against people with physical or intellectual disabilities—including access and architectural barriers—in public accommodations and transportation...

..."Of all the barriers to full participation and inclusion, the barrier of unexamined attitudes is the most difficult to address," said Ginny Thornburgh, director of the American Association of People with Disabilities' Interfaith Initiative. Its goal, she says, is "to bring the powerful and prophetic voice of the faith community to the 21st-century disability agenda," and to involve all religious communities. "There are no barriers to God's love," Ms. Thornburgh says. "There should be no barriers in God's house."

>>> For the Full Article
>>> For more on the work of AAPD's Interfaith Initiative

Guest Column: The Disability We Don’t See

Contributed by AAPD's Coalition Partner, the Islamic Society of North America (7/26/09):

The Disability We Don’t See
By Khansa Padri

Confession isn’t Part of Islam, but I reason to make one.  I used to harbor anxious feelings about people with physical and mental disabilities.  That’s why when the prospect of volunteering for the Special Olympics recently came my way I hesitated.

The inner debate was on.  Did I really want to get up on my Saturday morning and bake in the sun for innumerable hours to help with a program for people that made me uncomfortable?  But the social benefits for children in need!  Shouldn’t I help the feeble?

Ugh, but how well I remembered my own uneasiness in being around disabled children.  I could be cozy in bed, sleeping in late after a hectic week.  Then the little voice within spoke up, though I tried repeatedly to shut it out.  It kept asking: “What would Khadijah, the Mother of the Believers do, may God be pleased with her – the woman who gave everything to the budding Muslim community in Makkah, for the sake of Allah?”

At last, with a deep sigh and a quick bismillah, I signed my name on the dotted line.

Saturday morning I found myself decked in a white hijab and tons of sun-block lotion.  I can do this, I kept telling myself.  I tried to psyche up.  I envisioned myself happily and successfully getting through the day.  But most importantly, I renewed my intention to participate in this event solely for the pleasure of my Creator.

When I got to the Special Olympics site, abruptly I beheld a flurry of people-in wheelchairs, on crutches, cast in varied apparatus and motions all mingling with one another.  For a moment, I was taken aback.  My eyes swallowed the un-synched scene, and my heart gave a quick flutter.

I swiftly pulled myself together and registered, got my volunteer badge, and headed off to my event.  My task was mercifully simple:  Keep the relay race lines moving and physically assist anyone in need of a hand here or arm there.

One by one, the unique athletes, some trudging, others hopping, slowly struggled down the 50 yard track, never taking their eyes off the finish line and always surpassing it.  Each time a member made it across the trodden path, the entire team broke out in pride-screams of victory.  With each passing race words of encouragement instinctively spilled out of my mouth and  gentle touches of aide was a simple matter of reflexes.  I soon became a member of not just one team but all three.

The day moved faster than I expected. Even the blazing sun didn’t seem so bothersome anymore.  I was actually enjoying myself.  I ate some scrumptious food and even conversed with a number of participants, listening to their wholesome dreams of growing up and leaving their mark on the world.  Yes I had a bit of difficulty understanding  the speech of a few, but I never failed to see the eagerness and  determination to succeed that illuminated their faces.

The day wound down, only a couple of contests left.  I felt immensely satisfied with how the even unfolded for me.  Little did I know, that my day was just about to begin?

It was a 10-yard baton relay race between two teams.  Things were flowing smoothly as before with the athletes engaged in friendly competition. A small boy of about 7 in a wheel chair, with one full leg and one amputated to the knee, unexpectedly began struggling to stand up.

Naturally, I asked him what he was doing.  He would use his crutches in this final race, he said.  As I looked at him, it was clear that there was going to be on convincing this boy to stay in his wheelchair.  I had to think fast.  So instead of disallowing him, I simply gave him the keys to his independence.

Intently I watched him.  He began to wobble down  the lane.  He moved with laborious determination, stopping every so often to take a breath.  Whether  there was a rock along the way or Allah had just determined to teach me a hard-learned lesson, I don’t’ know. But before I could react, the young boy flipped onto the ground, his crutches lying close by.  Within seconds, I was beside the boy, feeling as if my heart was going to come out of my mouth.  I helped him turn over and checked for any injuries or signs of bleeding.  Except for a few minor scratches on his knees and palm, the boy appeared unhurt, alhamdulilah!

The race was over for him.  He’d turn around and call it a day.

But to my shock, he tightly grabbed hold of his crutches and fiercely stared in to the finish line.  His intent was clear.  So I helped him to his feet and then stood by in disbelief as the boy continued his arduous journey to complete the race.

Every eye was fixed upon him, step after grueling step.  By the time he reached that deeply coveted line, the entire audience was on its feet applauding raucously.  I myself literally jumped for joy and ran to meet him at the other end.

The satisfied look of accomplishment he wore, beads of perspiration on his forehead, is forever etched in my mind.  I congratulated him, exclaiming wildly: “You did it! You did it!”  He just looked at me.  And calmly he said: “No We did it.”

My heart dissolved. My eyes misted.  This 7-year old child, with a physical disability, yet the will and poise of  a hero, helped me more than anything I did that day.  He became my teacher.

For Allah had reminded me through him that the real disabilities in human beings lie not in their forms or intellects, but dwell in their hearts.  And all of them veil a single thing: A spirit imbued with arrogance that proud feeling which hinders us from acceptance of one another because of superficial differences; that prevents us from our native state of happiness for each other and mutual joy in togetherness; that keeps us from hymning our inborn will to express collective thanksgiving to the sole Creator and all His many splendid creatures.

I was humbled.  I was grateful.  By a miracle, I had been cured.

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

AAPD: Focus On ... IDAC

Religious Leaders Affirm Disability Rights

By Ginny Thornburgh

Director, AAPD Interfaith Initiative

Sometimes what seems impossible is actually possible.

When our president, Andy Imparato, asked me to bring the “powerful and prophetic voice of the faith community to the 21^st Century disability agenda,” I was stunned. Through almost twenty years of work at the intersection of religion and disability, I had learned that disability rights issues were not generally high on the agendas of most denominations and faith groups.

How in the world does one bring the “powerful and prophetic voice of the faith community to the 21^st Century disability agenda?” Through AAPD’s newest effort – the Interfaith Disability Advocacy Coalition (IDAC). That’s how.

IDAC is a diverse, nonpartisan coalition of religious and religiously-affiliated organizations whose core spiritual values affirm the rights and dignity of people with disabilities. The mission of IDAC is to mobilize the religious community to speak out and take action on disability policy issues with Congress, the President and Administration, and society at large.

The IDAC Steering Committee consists of both lay and ordained interfaith leaders who care deeply about issues of disability. At our initial meeting in October 2008, we hammered out our goals, our procedures and our membership requirements. Finding common ground and common cause across faith lines and across disability experiences was hard but very rewarding work.

Our first public policy effort was to draft an IDAC letter for House and Senate leaders in support of the Community Choice Act (indicate information on the AAPD website), legislation which promotes independence with dignity and allows individuals who receive long-term services through Medicaid to have a choice in where, how and from whom they receive personal assistance. By allowing older adults and people with disabilities to receive care in their homes and communities, passage of this legislation will ensure that they can remain active participants in their families, neighborhoods and religious communities.

When the IDAC CCA letter went to the hill on June 22, 2009,  twenty two respected organizations from a wide range of national religious groups had signed on and lent their moral support to the Community Choice Act. Sometimes what seems impossible is actually possible.

Our next step was to invite these twenty two very respected religious organizations and others who care about disability public policy issues to become Members of the Interfaith Disability Advocacy Coalition. Organizations seeking membership in IDAC must be a national religious or religiously- affiliated organization with the capacity to take action on national public policy issues; must agree to support IDAC’s mission and follow IDAC’s procedures; and must have a grassroots constituency and the authority to take positions on their behalf.

The variety of the first ten organizations completing IDAC membership applications was impressive: Lutheran Services in America, Union for Reform Judaism, National Catholic Partnership on Disability, Islamic Society of North America, Evangelical Lutheran Church in America, The Episcopal Church, The American Baptist Home Mission Societies, National Apostolate for Inclusion Ministry, United Methodist General Board of Church and Society, and United Jewish Communities/Jewish Federations of North America.

On Monday, July 27, 2009 we held the first IDAC Membership Information Meeting with featured speaker, the Honorable Tony Coelho, AAPD Board Chairman and Former Majority Whip, U.S. House of Representatives. A key author of the Americans with Disabilities Act (ADA), Tony spoke with passion about the need for more and better employment opportunities for people with disabilities and he described the discrimination he had encountered as a person with epilepsy. His remarks were gratefully received.

Also during that first IDAC meeting, AAPD president Andy Imparato, a self described “disability policy wonk,” outlined the landscape of the disability rights movement and drew particular attention to the Community Choice Act and the U.N. Convention on the Rights of Persons with Disabilities which will be at the forefront of IDAC’s agenda. Following Andy, Rabbi Lynne Landsberg, Senior Advisor on Disability Issues, Religious Action Center of Reform Judaism, spoke of her personal experience with brain injury and her strong belief that disability is a social justice issue which deserves the fullest attention of the religious community.

All in attendance at the July 27^th meeting offered enthusiastic support for IDAC. The meeting made us realize that once members of the religious community became aware of the pain of discrimination, exclusion and isolation which people with disabilities and older adults often experience, their support for disability rights issues is likely to be sure and swift. So that which seemed impossible is now very possible. Stay tuned as we gather new IDAC Members and begin to use the moral authority of the Interfaith Disability Advocacy Coalition for the good of our nation.

NYT: To Fix Health Care Simply Stop Treating People with Disabilities

Excerpts From the New York Times Magazine Section (July 15, 2009):

Why We Must Ration Health Care
By Peter Singer

...The debate over health care reform in the United States should start from the premise that some form of health care rationing is both inescapable and desirable. Then we can ask, What is the best way to do it?...

...If the U.S. system spent less on expensive treatments for those who, with or without the drugs, have at most a few months to live, it would be better able to save the lives of more people who, if they get the treatment they need, might live for several decades...

...When a Washington Post journalist asked Daniel Zemel, a Washington rabbi, what he thought about federal agencies putting a dollar value on human life, the rabbi cited a Jewish teaching explaining that if you put one human life on one side of a scale, and you put the rest of the world on the other side, the scale is balanced equally. Perhaps that is how those who resist health care rationing think. But we already put a dollar value on human life. If the Department of Transportation, for example, followed rabbinical teachings it would exhaust its entire budget on road safety. Fortunately the department sets a limit on how much it is willing to pay to save one human life. In 2008 that limit was $5.8 million. Other government agencies do the same...

...multiplying what we would pay to reduce the risk of death by the reduction in risk lends an apparent mathematical precision to the outcome of the calculation — the supposed value of a human life — that our intuitive responses to the questions cannot support. Nevertheless this approach to setting a value on a human life is at least closer to what we really believe — and to what we should believe — than dramatic pronouncements about the infinite value of every human life, or the suggestion that we cannot distinguish between the value of a single human life and the value of a million human lives, or even of the rest of the world. Though such feel-good claims may have some symbolic value in particular circumstances, to take them seriously and apply them — for instance, by leaving it to chance whether we save one life or a billion — would be deeply unethical...

...the benefits may vary in ways that defy straightforward comparison. We need a common unit for measuring the goods achieved by health care. Since we are talking about comparing different goods, the choice of unit is not merely a scientific or economic question but an ethical one.

As a first take, we might say that the good achieved by health care is the number of lives saved. But that is too crude. The death of a teenager is a greater tragedy than the death of an 85-year-old, and this should be reflected in our priorities. We can accommodate that difference by calculating the number of life-years saved... It’s easy to say, “What if the teenager is a violent criminal and the 85-year-old is still working productively?” But just as emergency rooms should leave criminal justice to the courts and treat assailants and victims alike, so decisions about the allocation of health care resources should be kept separate from judgments about the moral character or social value of individuals.

...How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? ...One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life...restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

This is the basis of the quality-adjusted life-year, or QALY...

Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition...

...The QALY approach does not even try to measure the benefits that health care brings in addition to the improvement in health itself. Emotionally, we feel that the fact that Jack Rosser is the father of a young child makes a difference to the importance of extending his life, but his parental status is irrelevant to a QALY assessment of the health care gains that Sutent would bring him. Whether decisions about allocating health care resources should take such personal circumstances into account isn’t easy to decide. Not to do so makes the standard inflexible, but taking personal factors into account increases the scope for subjective — and prejudiced — judgments...

>>> For the Full Article

Comment Below: I think this one speaks for itself, but I look forward to the inevitable comments.

Obama Reverses Stem Cell Restrictions: Debate Ensues

President Barack Obama signs an Executive Order on stem cells and a Presidential Memorandum on scientific integrity, Monday, March 9, 2009, in the East Room of the White House in Washington.

(AP Photo/Gerald Herbert)

From an AP article (March 9, 2009):

Obama opens up stem cell work, science inquiries
By SETH BORENSTEIN and BEN FELLER

WASHINGTON – From tiny embryonic cells to the large-scale physics of global warming, President Barack Obama urged researchers on Monday to follow science and not ideology as he abolished contentious Bush-era restraints on stem-cell research. "Our government has forced what I believe is a false choice between sound science and moral values," Obama declared as he signed documents changing U.S. science policy and removing what some researchers have said were shackles on their work...

...Researchers said the new president's message was clear: Science, which once propelled men to the moon, again matters in American life.

Opponents saw it differently: a defeat for morality in the most basic questions of life and death...

...The most immediate effect will allow federally funded researchers to use hundreds of new embryonic stem cell lines for promising, but still long-range research in hopes of creating better treatments, possibly even cures, for conditions ranging from diabetes to paralysis. Until now, those researchers had to limit themselves to just 21 stem cell lines created before August 2001, when President George W. Bush limited funding because of "fundamental questions about the beginnings of life and the ends of science."...

Comment Below: What do you think of this change in policy?  Is it a victory for science and a renewed hope for many?  or is it a tragedy which violates life? or neither? both?  What do you think its results will be? 

Community-based Rabbis Focused on Getting Out the Disability Vote

From the Central Conference of American Rabbis (CCAR) Monthly Newsletter (October):

Getting Out the Vote
By Rabbi Lynne Landsberg

This year, our country marked the 18th anniversary of the Americans with Disabilities Act of 1990 (ADA).  As a rabbi with a disability, the 18th anniversary held special meaning for me.  The ADA literally gave new life to Americans with disabilities by tearing down physical barriers, making discrimination illegal, and creating new opportunities for education and employment.  But as Senator Harkin (D-Iowa), an original sponsor of the ADA said at a summer ADA celebration on Capitol Hill, “With the ADA, we have climbed the mountain and reached the top, but we still have not fully arrived at the Promised Land.”  

In other words, we have much to do.

Among the immediate priorities is making sure that Americans with disabilities, who number more than 50 million people, get out to the polls on election day.  The Civil Rights Act of 1964 was followed by the National Voting Rights Act of 1965, ensuring that Americans of color were not prevented from voting.  Although the ADA was followed with similar legislation, greater effort must be devoted to enforcement of the law.

How can we as congregational or community-based rabbis help? 

In reality, many polling places are still inaccessible in various ways...

>>Read more.

Churches Try to Meet Needs of Children with Developmental Disabilities

Excerpt from the Baptist Standard (Oct. 23):

Churches try to meet need of developmentally challenged kids

By Adelle M. Banks

...Created about 10 years ago by parents with special-needs children, it’s just one example of how churches are trying to welcome families—who otherwise might stay home—into a faith setting that works for them and their children.

“It’s better than everything else in my life,” said Alec Carlson, 15, who has Asperger’s and joined 10 other people on a multicolored mat during the Scripture lesson.

Participants in The Haven, a ministry for special-needs adults and children, play a game earlier this year at Damascus Road Community Church in Damascus, Md.

Across the country, new programs and resources are being made available to families with special-needs children...

>>Read entire article.