About the healthcare debate- who defines what is "normal health"?

In the Healthcare Debate and Disability Studies article over at Literature, Arts and Medicine Blog, the author asks the question "who defines normal health?", noting two related items in the NY Times:

One was Dr. Abigail Zuger’s book review of Normal at Any Cost by authors Susan Cohen and Christine Cosgrove and the other was an essay entitled "To Overhaul the System, ‘Health’ Needs Redefining," by Dr. H. Gilbert Welch. What these articles have in common is that both ask us to re-examine what is meant by "normal health." And both articles raise this issue in the context of current national discussions about runaway health care costs.

.....

Questions about the definition of normal, about who gets to define "normal," and about the medicalization of the body are at the core of disability studies scholarship. So it would seem that in the debate about health care funding and cost control, some of this scholarship needs to be injected. Policy wonks and legislators should be aware of this body of work. In the context of these two articles we could point them to the work of those who have addressed these issues for more than a decade. For example, Robert Aronowitz demonstrated in 1998 that disease definitions are influenced by the vested interests of physicians, researchers, and policy makers in the biomedical enterprise and are not immutable biological entities, disconnected from their cultural context (Making Sense of Illness: Science, Society, and Disease. Cambridge: Cambridge University Press, 1998, pp 11-14).

Such vested interests abound - as we are all already knew, but are certainly witnessing - in the current debate.

The G.L.U.E. Manual

via NJCIM list serv:

The G.L.U.E. (Giving, Loving, Understanding, and Encouraging) Manual is now available. Written by Barbara Newman and Kimberley Luurtsema at CLC Network, this manual, with accompanying forms,
surveys, etc details a process for use in congregations who are seeking to discover ways that people with disabilities and their families can be included as partners in ministry. A one-time purchase of $60 for the manual connects the church to all of the fully reproducible and electronically usable materials needed on the web. For more information or to order a manual, contact CLC Network at glue@clcnetwork.

org or by visiting www.clcnetwork.org. This adds to other great resources written by Barb including, Autism and Your Church, and Helping Kids Include Kids with Disabilities.

Emerging Trends Public Consultation

via NCD list serv:

Emerging Trends Public Consultation

The National Council on Disability (NCD) is gathering public input for a study of emerging issues and trends affecting the lives of people with disabilities. Information gathered will be used in the development of NCD's next annual progress report to the President and Congress, "National Disability Policy: A Progress Report," which is required by Section 401(b) of the Rehabilitation Act of 1973, as amended.

The purpose of this public consultation is to gather input to inform NCD's assessment of the status of the nation in achieving policies that guarantee equal opportunity for all individuals with disabilities, and empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

If you would like to participate, the entire document and information on how to respond is available at http://www.ncd.gov/newsroom/publications/2009/NationalCouncilonDisability.doc.

Please send your responses to NCD by September 15, 2009.

Mark S. Quigley

Director of External Affairs

National Council on Disability

1331 F Street, NW Suite 850

Washington, DC 20004

202-272-2008

202-272-2022 fax

www.ncd.gov

You also may want to join more than 2,000 subscribers who receive the latest news from NCD via its listserv. Please sign up at http://listserv.access.gpo.gov/ and click on On-line mailing list archives, then select NCD-NEWS-L and complete the short subscription form.

Younicate voice shortcuts - freeware

Younicate Voice Shortcuts is a piece of freeware that helps you voice browse the web, play music and movies with voice commands.

I've found it also improves Windows Vista Speech recognition while browsing the web, often finding links with one or two word voice commands. This saves a lot of time and energy. Rather than reading an entire link, I'm able to read the first few words only.

You can find more information about it here.

A free download is here.

4 Austin Texas clubs and restaurants face ADA lawsuits

The Texas Civil Rights Project has filed four ADA lawsuits over lack of compliance with the law and access issues. Other establishments, like the Travis County Expo Center , Ironworks Barbeque and Habaneros Mexican Cafe have either settled their suits or complied, but now offer more access.

The Subway restaurant at Congress and Oltorf, Evangeline Cafe in South Austin, Submerged nightclub and La Zona Rosa, a popular concert venue, have each been sued for accessibility issues that plaintiffs say are out of compliance with the ADA. The lawsuits were filed on Monday. The establishments have not been served yet.

La Zona Rosa's box office has a ramp leading up to it, followed by a step down just before concert goers get to the ticket window.

Sending best wishes to Lady Vol Amber Gray

Lady Vol Amber Gray, pictured at right, underwent shoulder surgery on July 2, at which time doctors discovered that she had an aneurysm that was beginning to hemorrhage. A 12 and a half hour surgery was done last week at the University of Cincinnati’s Neuroscience institute and Amber is now in a rehabilitation center.

Prayers don't require a stamp and Get Well cards may be sent to:

Amber Gray
c/o Lady Vol Basketball
207 Thompson-Boling Arena
1600 Phillip Fulmer Way
University of Tennessee
Knoxville, TN 37996-4610

Disability.gov receives makeover

The site Disability.gov is worth a visit, especially now that it has had a makeover. It now offers social media tools and upgrades to information resources.

A brief description:

The front page lists news and events about federal opportunities for people with disabilities, among other topics. There's a list of topics ready to be searched above that, which takes readers to information about disability laws, transition services for young people, help starting a small business and finding a job and health care.

Another nice feature this site has always offered is state-by-state information.

At the bottom of the page, you will find links to topics including Community Life, Education, Emergency Preparedness, Employment, Health, Housing, and Technology. In the upper left corner, topics are also listed.

The 19th Anniversary of the Americans with Disabilities Act: -But...

[I regret I couldn't blog on the ADA's anniversary, but I'm still dealing with Verizon issues and will be, apparently, until tomorrow. Hopefully this post will go up.]

In remarks at the White House, where he signed the U.N. Convention on the Rights of Persons with Disabilities, Obama said the ADA resulted from a movement carried out by people who "refused to accept a second-class status in America."

via upi.com

A second-class status.

That's a great way to put it when ,19 years later, things as simple as going out to eat and using a bathroom are still up in the air. I just returned home from a Friendly's, a national food chain, where their bathroom was not accessible. So there I sit in an open doorway, no way to transfer onto a toilet, no way to close a door for privacy. A nondisabled woman in the bathroom said "Well that's okay. You must be used to having no privacy." She was diapering a baby and said "He doesn't mind" and laughed.

Second class status isn't funny or amusing.

And it's far worse than not being able to use a bathroom. We have staggering unemployment figures, even when we're not in recession. In June 2009, the percent of people with disabilities in the labor force was 22.6 compared with 71.9 for persons with no disability. We lack housing and transportation for people with disabilities. And we still face institutionalization in nursing homes at young ages.

Let's hear what our Attorney General had to say on the ADA anniversary:

As steward of the ADA, the Department of Justice is
committed to actively enforcing this critical civil rights law
and will use all tools to seek compliance - including
litigation if necessary - so that its promise of full
equality for Americans with disabilities can finally be realized.
We are full partners in President Obama's
designated "Year of Community Living" and will vigorously
enforce the Supreme Court's Olmstead decision to end unnecessary
institutionalization.

It's 19 years after the passage of the ADA and on this anniversary we need to remember those who have fought and are still fighting the good fight. We need to recognize the progress that's been made and those who have helped us. Sen. Tom Harkin has been a strong consistent voice on our behalf. There are many others as well, those in the disability community who have sacrificed, who first said "This is a civil rights issue" back when saying that was mocked. It still is at times, but imagine being among the first to do it.

Yet, despite progress we have seen, our unemployment rate is disgracefully high, not only in recession, but always. Imagine if our unemployment rates applied to the non-disabled population of our country.

There isn't enough housing, transportation is inadequate or unavailable for many and we are still working to get people out of institutions into community. Imagine if tomorrow nondisabled people looking for apartments had to eliminate those which didn't have ramps - or had to abide by laws which make them responsible for paying for access. Imagine if nondisabled people were told if they couldn't find housing or afford inhome care they would have to be in nursing homes in their teens, twenties, thirties, etc.

All those "buts"- we have a long way to go.

"It began when they not only refused to accept the way the world saw them, but also the way they had seen themselves," [President Obama] said.

More of us with disabilities approach life with a sense of empowerment and a positive attitude, in part because we have more opportunities and more allies, those who believe that we can live full and productive lives. Instead of raising artificial bars of ableism, we need to remain creative and resourceful so that more of us are freed from outdated stereotypes and attitudes that keep people with disabilities in lives of poverty, unable to use their talents.

Next year the ADA will be 20 years old. Let's make this year count.

Let's keep working toward getting rid of the "but's"....

Who does this benefit?

This post may or may not get up. After a dozen calls to Verizon FIOS for both phone and internet issues, still no action, but will give it a try.

I was reading Wheelchair Dancer's post about Debbie Brown this morning. She's the woman who is sitting in a rented 1200 dollars a year wheelchair that could be bought, according to CNN, for $440.

Those of us who buy our own wheelchairs find out quickly that online providers offer better deals. It doesn't take us long to figure out that we can save a lot of money by buying that way. So it's always confounded me why our government can't figure that out too. (And, as WD points out, other medical equipment- it's NOT just about wheelchairs.)

As WD points out the difference in costs is high.

I've since wondered about the difference in costs. Where do they come from? If I order 25" wheels online, I will pay 2/3 of the price my provider quoted me for the same pair of wheels. Where's that money going? I can't believe it's going to support good customer service (they've had my chair for ages now -- and haven't called to tell me they need a prescription for repair... as if my doc knows that my front casters are trashed. Please oh, doctor doctor, can you heal my casters?). Overhead? Rental? Salaries? Who knows. Certainly, I cannot immediately come up with a way to justify their costs. (Or their attitude.)

So who does it benefit not to have an open discussion about all of this? The DME industry.

And she also questions why this woman was in a rented chair, when "this "debilitating illness" forced Ms. Brown into early disability retirement. Doesn't sound like a temporary kind of thing".

Who does that benefit? The DME industry.

After all, Brown says the wheelchair barely works for her now. So guess what? Now she needs a new chair. And who does that benefit?

The DME industry.

Despite all this, as WD points out, the article is not a "bitter indictment" of the DME industry, but a human interest story.

Who does that benefit?

Well, you get the point.

Telling stories: McCourt as writer and teacher

As this NY Times piece says, former students of Frank McCourt are leaving tributes online about him.

Mr. McCourt began teaching in 1958, when he was 28, at Ralph R. McKee Vocational High School on Staten Island, and from 1972 to 1987 taught at Stuyvesant High School, a highly selective school, then on East 15th Street in Manhattan. His students learned from him that literature was nothing more — and nothing less — than the telling of stories.

I noticed that one of them is Marc, aka Wheelchair Kamikaze, who wrote about McCourt's death from the point of view as a former student. McCourt was his favorite teacher and he tells this wonderful anecdote:

When the class's attentions actually did turn to the study of English, we would often read Mimi Sheraton's restaurant reviews in the New York Times, the prose of which could transport Mr. McCourt to a state of rapturous joy. It wasn't until I read Angela's Ashes nearly 20 years later, that I understood his fixation on Ms. Sheraton's columns. He'd grown up quite literally starving, and the eloquent superlatives lavished on edibles by Mimi Sheraton must have put words to his own lifelong fascination with food.

Other students have left their recollections about Frank McCourt here.

You're in the wrong spot, buddy

Wisconsin lawmakers are considering raising the fine for handicap parking abuse from $350 to $500 and raise penalties for anyone "who produces, copies or sells fake parking cards." A spokesperson from Disability Rights Wisconsin "says the tougher fines and stricter enforcement will help discourage people who continue to abuse these cards."

This weekend after I lowered the ramp on the side of my van and started to roll down, a man whose SUV was parked in the adjoining handicap spot walked toward the driver's side door of his car, stood there tapping his foot and told me to hurry up, that he needed to get into his car.

I was down the ramp by then. I turned my wheelchair, looked at his car and saw no handicap placard or license plate. I realized I could have called the police to report the car, but he was going to leave as soon as I left, so that wouldn't do any good.

So I said "Well, since you have a disability, you understand that this" - and I pointed at the blue hash marks- "is for van access, right?"

He said "No, no, I need to leave."

I began to raise the ramp on my van - slowly. I continued "I'm just saying that since you're disabled too, you understand that these spots are for those of us who have specialized equipment. You do have a disability, right?"

My ramp was raising up in the air. The man looked toward his wife, who was in the car gesturing him to go, but he couldn't get into his car and so he said "Yes, yes I'm disabled or I wouldn't be parked here."

"Exactly," I said. "That would be illegal for someone who isn't disabled or doesn't have the right placard to park here. And certainly for them to rush someone who is disabled would be-" I hesitated and added "completely, utterly outrageous."

He looked at me, but said nothing. Inside the car, his wife had opened the driver's side window and leaned over to join in telling me to rush. He hushed her.

"So you understand?" I said.

"I understand," he said.

My ramp chose that moment to clunk into place. I hit the button to close the doors on my van, then locked it and rolled off.

"What was that about?" my mother asked as we went through the parking lot.

"Just a little disability awareness," I said.

And this kind of incident is why I'm all for raising the fines and better enforcement with the number of times I run into people who have no placard or plates taking up handicap spots, not to mention those who use others' placards illegally.

How Mackenzie uses assistive technology

via YouTube :
Mackenzie Kench, who has cerebral palsy, uses a talk link device to communicate, which she operates with her big toe.

In this video, Mackenzie is shown attending school using the device and also at home with her family, who tell a very funny story about how her 4 year old friends reacted to the device when she first started to use it.

Reactions to disability

Richard Pollins' piece in the Guardian talks about three kinds of reactions to his disability: the Troubled, the Inquisitors and the "well done for coming out, mate".

The British are, as we know, fairly reserved, polite, and often awkward. Which means most of the time when I meet new people, they don't ask why I'm on crutches. All that changes, however, if I'm out at night and the drinks are flowing. The interest levels seem to rise in parallel with the alcohol levels, and it's extraordinary how often I am clocked over the course of an evening by a sincere nod and the phrase: "Well done for coming out, mate."

The Inquisitors are interested, curious – and demand answers. Normally a short, occasionally awkward conversation ensues while I explain my lack of legs. Commonly, an Inquisitor's mission during this conversation is to find a line of questioning that is staggeringly original. I'm 30 now, and I can count on one hand the number of times they have succeeded.

Inquisitors sometimes ask to "have a feel" as if to see if he is telling the truth or "have a go" at his crutches. It is the Troubled who he finds most - troubling, who tell him tales of family tragedies or times they have fallen and had an accident while he is out trying to have a good time.

I don't wish to sound heartless, but when you're on a night out with your friends, enjoying a few drinks and having a good time, finding yourself embroiled in a stranger's troubles can be a little . . . deflating. I understand that seeing someone on crutches can remind you of your time on them (and I do even enjoy having my ego massaged by a temporary crutch user about my abilities on sticks), but it doesn't follow that I'm the best person to talk to about more severe, general disasters.

Yet, in the end, Pollins' article keeps a sense of humor about all these interactions, noting the various ways he has handled his disability in the past. It's a great read.

Sen. Ted Kennedy on universal health care

In a Newsweek article, Sen. Kennedy writes about universal health care, "the cause of my life".

He writes about his experiences when his son Teddy had cancer as a child and how other parents who did not have resources plead with doctors:

What chance does my child have if I can only afford half of the prescribed treatments? Or two thirds? I've sold everything. I've mortgaged as much as possible. No parent should suffer that torment. Not in this country. Not in the richest country in the world.

That experience with Teddy made it clear to me, as never before, that health care must be affordable and available for every mother or father who hears a sick child cry in the night and worries about the deductibles and copays if they go to the doctor. But that was just one medical crisis. My family, like every other, has faced many—at every stage of life. I think of my parents and the medical care they needed after their strokes. I think of my son Patrick, who suffered serious asthma as a child and sometimes had to be rushed to the hospital for treatment. (For this reason, we had no dogs in the house when Patrick was young.) I think of my daughter, Kara, diagnosed with lung cancer in 2002. Few doctors were willing to try an operation. One did—and after that surgery and arduous rounds of chemotherapy and radiation, she's alive and healthy today. My family has had the care it needed. Other families have not, simply because they could not afford it.

Sen. Kennedy writes about the history of efforts toward universal health care by others, including Truman, Teddy Roosevelt and the Clinton administration. He notes how John Kennedy supported Medicare. Sen. Kennedy also notes that in the 1970's he introduced a bill for health care that was lost in the aftermath of the Watergate scandal in 1974. (A timeline of his own efforts, including legislation he has supported, can be found here.) He explains how, over his long career, he predicted that businesses would eventually join on in realizing changes were necessary and outlines the current situation and what changes are necessary.

You can read the rest of the piece here.

Disability bloggers' reactions to Peter Singer's article on rationing health care

Reactions to Why We Must Ration Health Care


Peter Singer in the NY Times: Disabled Lives Worth Less Hypothetically

The 1/2 Compromise and Health Care

Being a Wally about QALYS

Shorter Peter Singer: Being Disabled Sucks, or How to Wallow in Ablism


Peter Singer and Health Care Reform

Peter Singer Applies Utilitarian Values to Your Life

Dirt buggy with laser equipment can be driven by blind

Oh boy. We're going to need one of these up at Ski for Light. After being regaled with driving stories by my blind friends, I know they're going to want one of these buggies ASAP.




via Engadget:

As the mighty Hokies look to prove their dominance in the field of engineering, a student team from Virginia Tech has assembled what amounts to a vehicle that can actually be driven by blind individuals. In short, the specially equipped dirt buggy is outfitted with an array of laser range finders, an instant voice command interface and a few other related systems that enable drivers to respond to whatever the vehicle "sees." Best of all, the project is far beyond the drawing board, with a blind driver (Wes Majerus) already singing praises about the vehicle and deeming it a "liberating" experience.
[visual image: Two students sit in a small red, four wheeled buggy with a metal cage and off road tires, driving through orange cones for a test drive. ]

What are you waiting for?

"What are you waiting for?" my drama teacher asked me when I was in tenth grade.

I sat there at the drama audition, looking around the green room and shrugged. "I don't know."

He shifted in his seat and leaned forward. "You could have the lead in any of these plays. But you have to believe that you can."

I looked down at the audition pieces I prepared. One was safe- a short reading. The other was harder. It was long. I would have to sing. I wasn't sure I could pull it off. I looked at him. I looked at the paper.

No, I didn't get the part. I read the safe one and gave the better audition piece to my friend in the hallway, who did get the lead.

I had a love/hate affair with Mr. N, my drama and creative writing teacher.

He bugged me to join the drama club when I signed up for his creative writing class. Then he pushed me even more. I kept thinking that he was wrong about me. I was shy. I was introverted. I was not cut out for debating topics or reading poems out loud or sharing from my journal. I had no idea what he was trying to do most of the time he was my teacher.

The day of that audition, when I took the safe route, was a turning point. I sat in the hallway, my head in my hands, and realized that life was not about waiting when there was an opportunity. I never made that mistake again.

Looking back, it was that lesson that helped me when I fought to go to college early, despite the school district refusing to issue me a diploma even when I had the academic credits. It helped me when I didn't have enough money for law school and had to work up to five jobs at a time some semesters. No, I wasn't going to sit out a semester and wait. I was going to finish on time. It helped me after I acquired my disability and people told me to put my life on hold. No, I wasn't going to wait to do things or put my career on hold. If I waited, I would miss chances.

I have no regrets from the times I didn't wait, just the times I didn't put myself out there. And, thanks to my drama teacher, there aren't many of those.

I read this quote this morning and thought of Mr. N:

Don't wait for your ship to come in. Row out to meet it.

—Unknown

I count myself lucky that I learned that lesson at such a young age.

I'm Deaf - so what? says...

the writer of the blog I Look So I Can Hear. With this great video showing images of Deaf people working in various occupations, the author writes:
I’ve not been short on the skills either. I’ve worked in retail, law, accounting, teaching, careers consultancy, and have my own businesses. I’ve plenty of deaf friends who are accountants, entrepreneurs, teachers, lawyers….. they are all smart and sassy. They’re deaf. So what? I’d say to any person who is put down by someone else; believe in yourself and go grab your life with both hands. You deserve nothing less.

Contingent on walking?

Yesterday I received an email from a Christian acquaintance with an attachment to a story about a dog born with two missing legs and a front leg that had to be amputated. It said

"He could, of course, not walk. Even his mother did not want him."

It spoke of the dog's owner's efforts to teach the animal how to walk on his two back legs and how she just would not give up. Included were photos of this dog parading about. I've included one photo above, showing the dog walking on his two hind legs behind his owner on a sidewalk.

Interestingly enough, this was referred to as a piece about faith. I kept thinking as I went through pictures of the dog walking in front of classrooms, etc. about how we apply the word faith to disability.

Far too often I've seen people with disabilities suffer because someone linked a lack of faith to an inability to walk, etc. There are those who believe - and even say- that if you have enough faith, you wouldn't be disabled.

This is spiritual abuse and an affront on so many levels to those living with disabilities. It judges not only our faith, but implies that our quality of life is contingent on things such as walking. Anyone who says they believe all humans are created equal and deserve dignity is contradicting himself or herself by saying this.

Why is this important? Because these assumptions are dangerous. There are people like Peter Singer who openly espouse rationing health care to people with disabilities and others on the basis that there is a lesser value to their quality of life. In this article, the author quotes the section about quadriplegics :

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," he writes.

The value of a life. My life. Your life.

When there isn't enough of a resource, concepts like rationing get applied. Withholding medical care or resources from certain groups of people is seen as a utilitarian way to control costs for the general good, morals be damned. And God help you if you fall into a class where you are one of those to whom it's rationed.

Oh no- I will not mince words when it comes to a public piece in the NY Times challenging my quality of life and the lives of my nearest and dearest friends who are also quadriplegics. It is summer. Many of them are holding barbeques with their families, wives, husbands, sons and daughters. Our lives are not as different as some would make them out to be.

Singer appears to make arguments on behalf of disability advocates and then concludes that those arguments paint disability advocates into a corner. This is a debatable position, whether he believes that or not. He also uses Christopher Reeve as proof- since it was clear he wanted to walk again- that not walking gives one a lower quality of life. Also debatable.

Not walking does not give one's life less value.

We need to be careful about all of our underlying beliefs and assumptions, particularly beliefs that life only has value when one is able-bodied. Rationing health care "would put bioethicists of the ilk of Peter Singer in charge of who received or did not receive wanted care. If that doesn't turn you off the rationing agenda, what will?" asks Wesley Smith.

UPDATES FROM THE BLOGOSPHERE:

Peter Singer in the NY Times: Disabled Lives Worth Less Hypothetically

The 1/2 Compromise and Health Care

Being a Wally about QALYS

Shorter Peter Singer: Being Disabled Sucks, or How to Wallow in Ablism

Zac sails home

Some readers may have noticed I've been following the voyage of 17 year old Zac Sunderland, who is returning home today after sailing around the world solo for 13 months. You can see a photo of Zac at sea above.

You can also find Zac's blog here, along with some great photos and stories about his journey.

Congratulations, Zac!

Delivering the best

There's another interesting post over at Rolling Around in My Head by Dave, called Stop. He writes about abuse in care systems and what it's like to work with those "who have suffered brutality and who look to see if it's in me. I am regularly in contact with those who expect the worst of me even as I struggle to deliver the best."

It's worth a read.

Laws changed in some states to protect restaurants donating food

As food pantries struggle to provide meals for increasing numbers, some states have recently passed laws to protect donor restaurants from civil liability, which makes "it easier for restaurants to donate leftover food to charities", according to USA Today.

Ross Fraser of Feeding America, a national association of food banks, says the demand for free meals rose by an average of 30% in 2008, but some areas saw an increase of up to 70%.

The article discusses changes in laws in Mississippi, Nevada, Massachusetts, California, and Florida. It is also noted by USA Today that

Food donors are protected from liability by the 1996 federal Bill Emerson Good Samaritan Food Donation Act, but it does not supersede state and local restrictions on food donations, says Maureen Ryan, spokesperson for the National Restaurant Association.

Why Is There a Menorah on the Altar? a new book by Meredith Gould

Those of you who read the blog from this page may notice that Meredith Gould's newest book Why Is There a Menorah on the Altar? Jewish Roots of Christian Worship is now on my sidebar. It is also available for pre-order.

Book description from amazon.com:

* Ecumenical, liturgical Christian audience -- particularly Episcopalians, Lutherans, and Roman Catholics
* Seeks to enhance Jewish-Christian reconciliation
* Excellent resource for interfaith couples, Christian formation, and sacramental preparation
A desire and demand to know more about the Jewish legacy of Christian identity is growing among laity. A desire to foster interfaith understanding and dialogue is growing among officials of local churches.

Meredith Gould's newest book meets these demands by providing information and delivering biblically and historically-based insights about Judaism's legacy as it's revealed in Christian rites, rituals, and traditions. She introduces Christians to Judaism's influence on the structure of liturgical worship; church sanctuary design and decoration; and the meaning and structure of baptism, Eucharist, and confirmation.

Why Is There a Menorah on the Altar? provides readers a deeper understanding of Judaism, one that will enrich their Christianity and deepen appreciation for their enduring Jewish legacy. Each chapter includes questions for reflection and discussion, plus practical exercises to illuminate key concepts. Questions and exercises can be used by groups as well as individuals.

About the Author
Meredith Gould, Ph.D. is the author of six books, including The Word Made Fresh: Communicating Church and Faith Today, (Morehouse Publishing).

Free wheelchair ramps available from Appalachia Service Project

via The Ridgefield Press:

Free modular, pre-fab wheelchair ramps are available to disabled individuals and non-profit organizations through the Appalachia Service Project (ASP), sponsored by Jesse Lee United Methodist Church in Ridgefield and the Danbury United Methodist Church.

ASP is a Christian ministry that sends about 15,000 volunteers from across the country each year to make homes warmer, safer and drier for 400-500 low-income families in Central Appalachia.

One hundred and thirty-five high school students and adults went to West Virginia and Tennessee with the Ridgefield/Danbury group this year.

Information and applications are available at jesseleeasp.org.

Petition for Jemma Saville

Over on Twitter, there's a petition being linked in support of a visually impaired junior doctor named Jemma Saville who has not been offered a training position on the basis of disability. After starting medical school in 2002, "Jemma's vision deteriorated and she was "registered as partially sighted in 2005". The petition reads:

The medical school supported her through her visual loss, and despite some obstacles, she completed her finals and graduated as a doctor in 2008.
In 2008 she was informed that there was no position for her to go to and took some time out from the profession to make some decisions.
By November 2008 the decision was clear: that there was a reason for all that studying and determination to succeed, and it wasn't just for a piece of paper, or the letters "Dr." She gained GMC provisional registration in March 2009: the General Medical Council believe that she poses no danger to patients on the grounds of her visual impairment.

Despite this, she has not yet been offered a training post within a hospital.

This petition is about showing her support, and proving to the sceptics out there, that (with very obvious limits) people with disabilities can be fantastic doctors.

"I want to be a psychiatrist. I am great with people, kind, empathetic, understanding. I don't want to be a surgeon, or perform clinical procedures which I am not competent to do, and I certainly would never put any patients at risk. I know what I can and can't do, and this is key to any doctor being safe. I believe that even with a visual impairment I can be a very successful, inspirational doctor. I just need to be given the opportunity to prove this."

If you support Jemma, and other partially sighted doctors in the future, please add your name to the list below. And thank you so much for your support.

You can find the petition here.

What empowerment is not

There's a list over at Disability Prejudice and Civil Rights Watch of what empowerment is not. I can relate to a number of things on it.

It includes:

when you ask [someone] a favor, having done them a favor yourself, being told it would be empowering to do it yourself

On the subject of favors, I've noticed how differently that works now since I've acquired my disability. I can help a friend with a resume or a ride or any number of things, but if I ask a favor back, I am often told that it's my aide's job. Or, as the writer says, my commitment to being independent is questioned. Needing a loaf of bread when you have the flu is no different for any of us. It is not empowering to go to the store sick.

It also includes:

Denying my physical or other disabilities and pretending I can do things I can not do

This happens at times. I'm astonished at the number of people who "get embarrassed" when I ask for help cutting up food, for example. The truth is if I pretend I can do it, I'm likely to wind up shooting my food across the room. (Once I landed a sticky cornish hen against a wall, but that's another story.)

What's behind this, however, is not funny. So often I see people with disabilities pretending to do things they can't. They fall or injure themselves. They deny their hidden disability and wind up with larger life problems. It is not empowering to deny who one is.

Great post. Hope more people comment on it or blog about it.

Dazzboard

Dazzboard is a free online media manager that supports all mobile devices, including cell phones, mp3 players and media players on a Windows PC). You can use it to

* Connect your portable device and PC
* Transfer your photos, music and videos
* Download content from the Web to your device
* Upload content from your portable device
* Connect your device and Social Networks

It's still in the beta stages and you have to request an invitation to use it. You can also view a video about how it works at its site here.

LA Times reports delays and lack of oversight in disciplining problem nurses leave public at risk

When fellow nurses reported Owen Murphy Jr. for behaviors such as twisting the jaw of a patient, slamming an elderly patient against a mattress and telling him "I said, Stay in bed", ignoringalarms on vital-sign monitors, hurling a thirsty patient's water jug against the wall and shouting at coworkers, they assumed the board would take action. Murphy resigned under pressure, but California's oversight board failed to take any disciplinary action for three years, the LA Times reports. The article says that the public is unaware of the risk due to delays of this kind, even for egregious misconduct, leaving nurses free to practice who have "histories of drug abuse, negligence, violence and incompetence".

Reporters examined the case of every nurse who faced disciplinary action from 2002 to 2008 -- more than 2,000 cases in all -- as well as hundreds of pages of court, personnel and regulatory reports. They interviewed scores of nurses, patients, families, hospital officials, regulators and experts.

Among the findings:

* The board took more than three years, on average, to investigate and discipline errant nurses, according to its own statistics. In at least six other large states, the process typically takes a year or less.

"It's really discouraging that when you do report people . . . they don't take action," said Joan Jessop, a retired chief nursing officer in Los Angeles who filed multiple complaints with the board during her 43-year career. "What is so frightening to me is that these people will go on and do it to somebody else."

* The board failed to act against nurses whose misconduct already had been thoroughly documented and sanctioned by others. Reporters identified more than 120 nurses who were suspended or fired by employers, disciplined by another California licensing board or restricted from practice by other states -- yet have blemish-free records with the nursing board.

* The board gave probation to hundreds of nurses -- ordering monitoring and work restrictions -- then failed to crack down as many landed in trouble again and again. One nurse given probation in 2005 missed 38 drug screens, tested positive for alcohol five times and was fired from a job before the board revoked his probation three years later.

* The board failed to use its authority to immediately stop potentially dangerous nurses from practicing. It obtained emergency suspensions of nurses' licenses just 29 times from 2002 to 2007. In contrast, Florida's nursing regulators, who oversee 40% fewer nurses, take such action more than 70 times each year.

UPDATE: Schwarzenegger sweeps out nursing board

Proposed change to Ohio's budget bill could threaten nursing home patients' access to complex wheelchairs

Those are the complex wheelchairs that are custom-made for patients such as paraplegics or those with multiple sclerosis who have moderate or severe physical challenges that can’t be met by standard wheelchairs. Industry members hear they could lose a direct reimbursement from Medicaid, see that amount cut and then diverted through nursing homes where many of their customers live.

Carol Gilligan, president of Health Aid of Ohio in Cleveland, spent the last two days in Columbus trying to find out about the behind-closed-doors addition to Ohio’s budget bill. Health Aid specializes in customizing, assembling and delivering the wheelchairs – a $15 million-a-year industry in Ohio, Gilligan said.

Under the proposed change, nursing homes would receive the Medicaid payments in a convoluted fee transaction with the state, Gilligan said. The wheelchairs would belong to the nursing homes, not the patients, she said. So if a patient left a nursing home, the wheelchair would stay behind.

Bundling these services for nursing home residents increases the expenses of the homes, enabling the state to qualify for more Medicaid dollars, Johnny Miller, homecare manager of Miller’s Sales & Rentals of Akron, told legislators during testimony on Tuesday.

Gilligan and others fear the change would make it next to impossible for nursing homes to afford the complex wheelchairs, which can range from $3,000 to $15,000.

What’s more, the change would devastate businesses in the industry. Gilligan said she would lay off 20 workers and Miller testified he would cut 25 to 35 of his 100 employees.


via medcitynews.com

Higher quality providers could be put out of business, legislators note, since the services would be bid on cost and failure to provide wheelchairs will leave people bedridden, resulting in costly medical complications.

Not to mention robbing them of any quality of life since people would have to leave their wheelchairs behind "if a patient changed providers or moved to PASSPORT or assisted living, their wheelchair would not move with them because it would belong to the nursing home.”

Ghana schoolchildren await historic visit of first African-American US President

This BBC article discusses Ghana's history and connection to slavery, as well as the significance of the president's visit there. Ghana, which was the first African county emancipated in 1957, has a democratic government showing what Obama has referred to as an "effective governance" despite some flaws, such as relying on international help despite having strong natural resources.

Related:Obama's Ghana visit will stress African self-reliance
US Hopes Obama's Ghana visit will spur others
Obama's Ghana trip sends message across Africa

Two news stories

Two articles forwarded to me via email this morning that I'm reading over a cup of coffee- talk about one extreme to the other!


Last week a high school cheerleader was accused of stealing money from a group of kids, including a girl in a wheelchair, who were selling t shirts and hats.

According to police, Steele approached the kids, started a conversation with the father of two of the children, then, when the man left, took the cash and ran. She then got into a car and drove off. Three other teenage girls were in that car with Steele. Police have not yet decided whether to charge the other teens.

Steele's mother, according to the article, offered to repay the stolen $147 if the charges were dropped, but the children's father hasn't responded, saying he wants a "lesson learned".

UPDATED: VIDEO

Visit msnbc.com for Breaking News, World News, and News about the Economy

**

Out in Utah, a TV viewer donated a lift and the labor to make the Small Smiles Bookmobile accessible for all children.

Until school starts, the bookmobile will be at Lindavista Park in Syracuse every Tuesday and Thursday mornings. All children are invited to come, and it's free.

The Pope receives President Obama

In their first private meeting today which lasted approximately twenty minutes, Pope Benedict XVI and President Obama spoke about "moral values in international politics, immigration and the Catholic Church’s contribution in developing countries", according to Press Office Director Fr. Federico Lombardi.

In addition, Fr. Lombardi said the they discussed inter-religious dialogue and Middle East peace, with both reaffirming the need for a two state solution. He said the US president “reiterated his commitment to reducing the incidence of abortion”.


President Obama’s parting words to Pope Benedict Friday were that he looked forward to future strong relations between the United States and the Holy See, Pope Benedict told the President: “I thank you for all your work! I’ll pray for you!”

via radiovaticana.org

Video coverage of the public portion of their meeting can be viewed here.

The Access - universal weight machine

The Access is a universally accessible weight machine, in the running for the James Dyson Award.

The Access was inspired by the difficulty, after the designer saw a man in a wheelchair arrive at a gym, with a bag full of homemade gadgets attached to the back of his chair. In the following hour and a half he spent more time fiddling with the equipment and getting in and out of the chair than he did working out. Surely, he wasn't alone: Almost no gyms have equipment for the handicapped.

The designer's still anonymous, because the design itself is competing for the James Dyson Award, a global competition to find the cleverest student-designed concepts (after the spirit of Sir James and his ubiquitous vacuum). The Access has two arms that extend laterally, and which can rotate up to 180 degrees, each independently. That allows anyone to configure it to their specific need:

via fastcompany.com

A video is shown below.



The entry is in second place and voting is still open - -entries are all now online, and by registering, you can vote for the best (and worst) until July 20th.

Keeping kids fed all year

The US Department of Agriculture's Summer Food Service Program "serves meals at supervised sites near where children live in the community." It helps bridge the gap for those children who receive meals during the school year, but may go hungry in the summer months.

The program can always use volunteers. If your community needs help, visit the link above to see how organizations can sponsor SFSP in your area.

To find your state agency that handles Child Nutrition programs, click here.

The Voices of Lupus

A NY Times feature - the Voices of Lupus featuring six people who have lupus.

from the article:

Lupus affects more women than men, and is more common among blacks and Asians. The inflammation associated with lupus affects everyone differently, attacking skin, joints, kidneys, the heart and lungs. Symptoms, which often flare and subside, can be vague, mysterious and frightening and show up in a variety of forms in different patients. They include, fever, fatigue, joint pain, anxiety and mental confusion. Others symptoms include a butterfly-shaped rash on the face, skin lesions, mouth sores and hair loss.

For questions about lupus, go to the Consults blog, “Ask an Expert: Understanding Lupus.” Dr. Richard Furie, chief of the division of rheumatology and allergy-clinical immunology at North Shore-Long Island Jewish Health System, is answering reader questions.

House of Lords defeats assisted dying bill

via BBC News:

A move to make it legal to help a terminally ill person to die has been defeated in the House of Lords.

The measure would have removed the threat of prosecution from those who go abroad to help an "assisted suicide".

...

The Care Not Killing Alliance, an umbrella group of doctors and organisations opposed to changing the law, labelled the amendment "dangerous".

They argued it runs the risk of vulnerable people being pushed into going to clinics like Dignitas against their will.

Free accessible software for computer users

There are many software resources out there that are available for free, which provide access to computers for those with disabilities. (For a great discussion of what's out there and how it's used - or not used- in the educational system, click here.)

My SmartNav stopped working this weekend. Gamers use them for hands free gaming, but I use it to move my cursor and click. Basically, you wear an adhesive dot - on your forehead, eyeglasses, the brim of a hat, your knee, etc. - and direct it at an attached external camera to control the cursor. The device is costly so it's not something I will replace immediately.

But I googled and found a program called Camera Mouse 2009, which is free and will help me out. You do need a webcam to use it, but it's easy to learn.

I was very grateful to find it and would like to pass it along to anyone else who would find such a program useful.

A short film on disability

This short film by Praveen K. raises the question of how we see what we choose to see as it follows a young man getting out of bed, riding to work on a scooter, seated at his desk working - and then shows him leaving work on crutches, followed, in part, by the message that we see what we choose to see and the words: "There is only one disability - the disability to accept".

Literacy program volunteer Leonardo Camargo talks about his work

Leonardo Camargo, a recent college graduate, is interviewed in this video by SCI-Peers.org about his volunteer work in literacy training. He describes how important literacy is to accessing health care, as well as his goal of obtaining employment as a result of his volunteer work.



In the next video, Leonardo talks about his college education and his accident and spinal cord injury.

Glucose testing a la Nintendo DS...and a Didget

BoingBoing reports about the pre-launch page for the Bayer Didget, a device that rewards users for consistent testing. It was invented by a parent who noticed his son would lose his blood glucose meter, but never his Gameboy. The Didget was designed by both of them and is

a blood glucose meter which plugs in to the DS / DS Lite's Slot-2. Consistent glucose testing by the diabetic child (or adult, presumably) is rewarded with points in a game that can be used to buy items or unlock levels. As with the the 'iPlayer' hardware video decoder for the DS which Cory recently posted, the downside is that the new DSi doesn't have a Slot-2.

The gadget provides two modes for users - a basic mode (L1) which requires inserting the test strip in and out and an advanced mode (L2) which includes the basic mode with personalized treatment goals.

I noticed the pre-launch page is UK - based, but that they are building a web community that will be called "Bayer Didget World" and mention late summer to check back. There is also a way to sign up for more information over there if you're interested and/or have a loved one, friend, family member, patient, etc. who might find this gadget motivating - or make treatment a bit less scary.

Wimbledon hosting inaugural women's wheelchair tennis doubles

Happy 4th of July to my readers.

Wimbledon, which began holding wheelchair tennis competition in 2005, is holding its first women's wheelchair doubles tennis event this year.

The History

Wheelchair tennis has proved highly popular with spectators at The Championships since the first men’s doubles exhibition was staged in 2001 and the popularity has only increased since the first Wimbledon Men’s Wheelchair Doubles in 2005. The sport is now firmly established at all four Grand Slams. This year’s first women’s event will follow the same format as the men’s doubles, with four of the world’s leading women’s doubles partnerships competing for the top tier of world ranking points in an event sanctioned by the ITF as part of the global NEC Wheelchair Tennis Tour. via paralympics.org


The Players

Dutch top seeds Korie Homan and Esther Vergeer will play Lucy Shuker (GBR) and Daniela di Toro (AUS) in Sunday’s Women’s Wheelchair Doubles final at The Championships after di Toro and Shuker beat the second seeded pairing of Florence Gravellier (FRA) and Jiske Griffioen (NED) 64 64 in Friday’s semifinals.

Di Toro and Shuker won the closest of Friday's two matches, the Anglo-Australian pairing gaining an immediate break of serve to go 2-0 ahead and only being taken to deuce once in the first nine games, that coming in Shuker’s opening service game.

via itftennis.com

The finals will be played Sunday.

[image description: Esther Vergeer is shown preparing to hit a tennis ball with her racket.]

Student invents escalator that can transport wheelchairs

It's also energy efficient. (A photo can be found at the link).

Moving plates form a platform to carry wheelchairs on the escalator, invented by Jesus Sanchez for his final graduate thesis at the Universitat Politècnica de Catalunya. Sanchez is looking for investors.

The most obviously clever part of the design is its steps. Normally, the escalator's steps are of a standard width. But at the push of a button, three steps come together, to create a platform that's perfectly sized for a wheelchair.

As Sánchez points out, such a dual-purpose escalator could present significant cost savings for builders who would otherwise have to install an elevator.

via FastCompany.com

Faith communities and disabiity

An article over at pbs.org discusses various faith communities and inclusion of people with disabilities.

Reverend Bill Gaventa of the Boggs Center on Developmental Disabilities:

In every faith community there is a scriptural basis for welcome and hospitality. But you’ve also got congregations who live in cultures where people with disabilities have been hidden and ostracized and devalued in lots of ways, and too often faith communities sanctify prejudices in the community rather than challenge them. It shouldn’t be easier to get into a bar than a church.


Rabbi Grossman of the Adath Israel Congregation in Lawrenceville, NJ, notes how his synagogue is known as a 'special needs community' when it makes up a small percentage of who attends, but says "I think it defines the synagogue because it simply doesn’t happen elsewhere." He adds that "you got to create the environment where everybody has a place, and if you start with that notion, then everything flows from there."

Skallagrigg

I'm reading Skallagrigg, a 1987 novel by William Horwood about what's been described as a "mythical protector of disabled people". The book tells the story of Arthur, a young disabled boy thought to lack intelligence because he can't speak, who is placed in an asylum in the 1920's and Esther, who lives in 1982. Esther, who has cerebral palsy, is institutionalized by her father, but eventually lives with him. She designs a computer game about Skallagrigg which is then deciphered by an able bodied computer gamer seeking answers, after her death, about her work and the Skallagrigg, who is only known to the disabled children who "look and keep on looking".

The book describes the dehumanization of life at the asylum, where Arthur is called by the wrong name, stripped of his few meager belongings and sadly neglected until he winds up in the infirmary, close to death, holding onto hope only through knowing about the Skallagrigg. In particularly touching prose, the author writes about Arthur "losing the sky" as he lays in a bed, reaching up to a window so high it hides his view from outside the institution.

The book also explores the issues facing Esther's father, although I haven't finished it yet so can't write about it at length, but the struggle of Esther and her father in their relationship is portrayed, when her father, after years of visiting her, brings her home.

A movie was also made by BBC and is available for viewing on YouTube since no DVD was released, but after watching a bit of it, I highly recommend reading the book as well, which is a completely different experience.

BBC reports "veterinary approach"used in Greek mental care facilities

A BBC reporter writes that twenty years after a scandal about care conditions in Greek mental care facilities, she witnessed patients tied up in a building in so much disrepair that it appeared to be abandoned.

Chloe Hadjimatheou went to the Women's Clinic at the Dromokraitio Psychiatric Hospital in Athens, which houses about 300 patients. When she saw wide leather straps and buckles next to the beds, the head nurse told her:


"We have to keep some patients tied at night to prevent them wandering around and waking the other patients," Head Nurse Maria Makraki explains.

Dr Astrinakis interrupts her: "Just like a dog you tie up to stop it wandering off… this could be considered the veterinary approach to psychiatry."

He points to buckets below the beds that act as make-shift toilets.

...

Nurse Makraki tells me that staff shortages mean that there are usually only two nurses caring for around 30 patients.

That is half of what is required to provide basic care.

Stella Galianos, a psychologist, estimates that in every clinic at Dromokraitio hospital there are around three to four people tied to their beds.

I ask her if the woman I saw could end up tied to her bed for years.

"Yes definitely."

And, although the Athina Residential Home was pointed out to the reporter as an example of reform, the staff there went unpaid for six months last year. In light of the issues, the European Union has told Greece that "if it does not come up with roadmap for psychiatric reform by next month, EU funding will be cut from social projects across the board."