New to the blogroll: The Traveling Wheelchair

After spending nearly 20 years in a nursing home, Kenny now has an accessible home. I found his wonderful blog The Traveling Wheelchair, which rates places he goes to in terms of access, on a score of five to zero. This is a great access guide for others traveling in Massachusetts, where most of the recent places seem to be. Kenny describes parking facilities, ramps on beaches and things to do at each place.

There is also a section on DisabilityVoice , where you can get your own web page for advocacy issues.

His blog also contains a lot of disability-related information, including legislation , the ADA, and other links.


I really like his mission statement:

"To help make the world more sensitive, respectful, safer and accessible to all."

Accessing nature

A number of years ago,I was fortunate enough to be able to go with the Ski for Light organization on their summer trip. With assistance, I was able to tandem kayak, enjoy swimming and go on hikes. I'm very grateful for the volunteers who made this possible because, without their help, most of the activities wouldn't have been possible.

Every summer I'd like to participate in these things, but it isn't possible. There aren't enough volunteer organizations around for that to happen and, as a single woman with a disability, those in my life who are willing neither have the time nor energy to help me do things like kayak.

So it was with mixed feelings that I read an article this morning which seems to say that those who advocate for access to the wilderness through "motorized means" are being, well, selfish. The truth is that the only way I get a taste of nature is through my own means, which is my power chair. And, yes, I drive as close as I can to the site if access is an issue because often that's the only way to see things. If it weren't for the paved nature trails around where I live, I wouldn't be able to enjoy the parks around here, for example. As a person with quadriplegia, I do rely on man-made and motorized access to wilderness areas.

Although the author is well meaning by extolling her mother's virtues and talking about her experiences with volunteer organizations and within her own family, I find it rare that friends with disabilities can afford to pay helpers or have available family members to help them access nature and even more rare that they've found a volunteer organization to work with them to do it. The author seems to unnecessarily label people with disabilities as "selfish" for wanting to be able to enjoy the wilderness independently when, quite frankly, that's often the only option for so many.

May I suggest that a better approach for the author would be to engage in dialogue with members of the disability community who disagree with her view, to find out why their needs may differ before assigning labels. Although the people with disabilities she knows have certain views, that doesn't necessarily mean that those who disagree lack humility, as she seems to say. I'd also be curious to see where she wishes to draw these lines in the wilderness where man made access shouldn't be provided. How would she and others who share her views suggest handling a situation where a couple who are both in wheelchairs would like to travel independently by themselves, an often ignored reality?

I'm always reluctant to speak for everyone on these issues, so I'd be interested in hearing what readers have to say about this.

via JF Activist : H1N1 and the Disability Community

JF Activist has important information up about the H1N1 Flu and the Disability Community.

A teleconference was held this week and it was mentioned that personal care assistants and those providing direct care to people with disabilities should be vaccinated to make sure there is continuous care.

Officials mentioned that seasonal flu vaccinations will start nationwide within the next several weeks, starting September 10, with a second round to start in mid-October, when the H1N1 vaccine will be available.

They noted that H1N1 affects people differently but there are five groups more at risk: pregnant women, people with children less than 6 months old, health care emergency personnel, people between ages 6 months and 24 years, and people ages 25-64 who may be at higher risk due to chronic or other medical conditions. This totals about 160 million people.

Please take a moment to read the entire post at the above link and visit the website http://www.flu.gov as a source of information.

ADAPT at Sestak Town Hall meeting on health care reform

"The state of American politics is such that people painting Hitler mustaches on photos of our president get more attention than a grassroots movement to provide sensible, humane and cost-effective long-term care to people with disabilities. What a shame."

Daniel Denvir writing on ADAPT's support of the Community Choice Act at Sestak Town Hall meeting. You can read the rest here.

New Mac OS, Snow Leopard, includes features for blind users

Just a FYI:

According to a NY Times article, Snow Leopard has some features for blind users, so it might be worth checking out:

There’s an impressive trove of tools for blind Mac users, including one that turns a Mac laptop’s trackpad into a touchable map of the screen; the Mac speaks each onscreen element as you touch it.

In Memoriam for Sen. Edward Kennedy, WC goes dark

In Memoriam for Senator Edward Kennedy, Wheelie Catholic goes dark, as has the blog Day in Washington, where it reads:

Perhaps more than any other individual, Senator Kennedy’s commitment and dedication to the well-being of vulnerable populations has lead to the enactment of groundbreaking legislation. This has included the Civil Rights Act of 1964, the Americans with Disabilities Act, Title IX, the Family Medical Leave Act, and other laws that have changed the course of this nation and have exemplified him as the champion of the common man.

Out of respect and in honor of everything “Ted” has done for people with disabilities over his decades in the Senate, the Day in Washington blog will go dark. We have lost a great advocate; he will be missed.

Back to Middle School- a guest post

[This blog post was written by my nephew Danny who will be heading back to middle school soon. Thanks, Danny, for being a guest blogger!]

School - some kids have shivers sent down their spines just by the sound of that one word!

As the school year comes closer parents will be going to department stores, malls, and clothing stores to get their kids what they want.. You know what that is like - crowded aisles with small children and mothers screaming “WHAT KIND OF BINDER DO YOU WANT JOHNNY, COME ON MAKE UP YOUR MIND!” Yep, that is what it is like around here in August.

This year my classmates and I are going to a higher grade which can be very stressful for them and their parents. I am going into 8^th grade which is the highest grade in my middle school. We like to call ourselves the Head Leaders at the school.

But what is really scary is kindergarten. I was scared to death when I was going to kindergarten! I didn't want to even get on the bus, but once I got to the school I had the time of my life. Kids are not going to get any sleep the night before school, especially if they are going into the High School. The High School is the granddaddy of all the schools (except colleges and universities, of course) .

So I guess I’m happy to be going to middle school – right in the middle of it all!

Sen. Edward Kennedy dies

It is with great sadness that I read this morning about the death of Sen. Ted Kennedy. His family issued the following statement:

"We've lost the irreplaceable center of our family and joyous light in our lives, but the inspiration of his faith, optimism and perseverance will live on in our hearts forever. We thank everyone who gave him care and support over this last year, and everyone who stood with him for so many years in his tireless march for progress toward justice."

You can find other tributes to Sen. Kennedy here.

High school students build ramp

Cross High School students used their shop class skills to build a ramp for Martin Novak, 16, who was recently paralyzed in a shooting. The ramp will give him access to his own home. His relieved mother told the reporter that she didn't have the funds to make her home accessible and she didn't know what to do or who to turn to. so she asked the high school and its students for help.

"My heart feels happy for him that these people care for him the way they do," said Novak.

All three of McGann's construction classes took part in the project. He knew the projects would have a positive effect. "It's a huge lesson for them. These young men may not see a lot of people reaching out to their community."

Their generosity is helping a former student come home to those who need him most. "I want my son home. I miss him," said Novak. via wtoc.com

Juliana Recio Calero: An Advocate

In this video, Juliana tells her story:

via YouTube: My name is Juliana Recio Calero and I grew up in beautiful Bogotá, Colombia. When I was an infant, I contracted polio and to everyones surprise, survived bronchial pneumonia as well as numerous surgical orthopedic procedures. 30 years later, post-polio syndrome caused me new weaknesses, pain, and fatigue. After walking with leg braces and crutches for years, I had to readjust and accept a new condition that was progressive. After fighting it for a while, I started using a wheelchair, because it gave me independence, made me faster, and helped me conserve energy.

DOJ report cites abuse at New York State juvenile detention centers

A nearly 2-year investigation by the Department of Justice into New York's juvenile residential centers may result in a takeover of the states youth detention system if problems are not addressed. The report revealed that "children at four juvenile detention centers were so severely abused by workers that it constituted a violation of their constitutional rights".

Workers at four locations routinely used physical force to restrain residents under 16 years of age against the rules, with serious resultant injuries such as broken teeth and bones, for infractions that were as minor as seeking an extra cookie, refusing to stop laughing and glaring at a staff member.

Officials at the centers also routinely failed to follow state rules requiring that instances in which force is used be reviewed after the fact. In some cases, the same staff member involved in an episode conducted the review. And even when a review determined that excessive force had been used, the staff members responsible sometimes faced no punishment.

The report also found that state officials failed to provide youths in detention with adequate counseling and mental health treatment, something the vast majority of residents require. Three-quarters of residents enter New York’s juvenile justice system with drug or alcohol problems, more than half have diagnosed psychological problems and a third have developmental disabilities, according to figures published by Office of Children and Family Services.

Well, that was easy....

So I'm back from Target with a $20 microphone to use with my voice recognition . I bought a GE portable headset with detachable mic, which is turning out to be pretty good.

I always get this gut-wrenching feeling when a piece of equipment breaks, especially one that I depend upon for work. Often I just can't go to a regular store and pick up a replacement item. So t's refreshing to be able to spend $20 to replace an item and get something that is workable. And it shows how far voice recognition has come that I can plug a microphone in on a new profile without much training and get right to work on basic things.

Of course voice recognition is still new with some things, like cars. It helps to know what the commands are - or it can be more aggravation than it's worth.

Technical difficulties

My cat who thinks he's a dog managed to chew through my microphone so cant use my voice recognition. Blogging will resume after I get a microphone-promise.

Quadriplegic Dumping: Watch what you say about quads, please

Tom DeLay now claims that quadriplegics on gurneys were dumped in front of his podium at town hall meetings in the '80s, claiming this has been going on at health care town hall meetings "forever".



This article thinks DeLay has had a memory lapse, noting a May 1996 article about an ADAPT protest that he could be mixing this up with, which is a far different thing .

It begins like this:

"Groups of protesters, most of them in wheelchairs, barricaded two local political offices Tuesday to demand changes in the way disabled people receive care in America. ... A second group of about 150 ADAPT supporters blockaded and occupied U.S. Rep. Tom DeLay's office in Sugar Land [Texas], until DeLay agreed to meet with them. "

And continues:

"Tuesday's protesters narrowly escaped arrest by Stafford police when DeLay, who is in Washington, D.C., agreed to meet with them next month."

First of all, his claim feeds into peoples' comments about how anyone with a disability who dares to speak up at a health care town meeting is a setup, as if people with disabilities should not have an opinion or, if they express one, someone told them what to say. There's always that passive element involved, as in someone bringing them in - i.e. dumping them- not attributing self determination to our actions.

If you think that assumption isn't a big deal, take a moment and ponder how this waters down our opinions if people take a look, see a disability and assume we are fed our opinions. And by the way, this assumes all of us with disabilities think the same way, which is laughable if you've spent any time among us.

Secondly, this is typical of the ableist tendency to remain ignorant about the differences in disability. Any two people in a power chair have different disabilities, although they may look the same to someone who is ignorant about disability. Even if this claim by DeLay was true, it's incredible to think that someone went out, recruited all quadriplegics, put them on gurneys and brought them in. Did they raid local nursing homes to find enough quads? Not to mention, most quadriplegics on gurneys are only on those because they can't afford a wheelchair.

Just an FYI for anyone who thinks we live on gurneys.

So taking the name of quadriplegics in vain appears to be a story behind the story here that most likely will garner no attention. I'm tired of these passive characterizations of quadriplegics and angry that those of us who work so hard to get rid of myths and assumptions continue to be bombarded by them, as if it's socially acceptable.

The next time you hesitate as a person with a disability to speak up, remember that your opinion matters. Those who see us as objects who are dumped, those who still insist on turning us into lemmings who all look the same are not going to shut up on their own. Their insistence on doing this obscures the real issues about disability and health care - long term care and the Community Choice Act, among others. It is up to us to claim our personhood and to insist that generalizations about disability and, at times our disability in particular, are untrue and that it's unacceptable to view us that way.

3 Point Hand Strap: inexpensive because it's not made for people with disabilities

In case anyone out there with hand gripping issues is reading, I'd like to mention that Engadget had a post up about a 3 Point Hand Strap that can be used to attach to a camera's tripod socket and wrist for $16.

Knowing how expensive products that are made for disability are, I like to pass along information about these mainstream products for you to use as you will. At that price, it may be worth getting one and experimenting with it around the house to see what you can hold with it.

CP Survival Guides by Parents

CP Survival Guides are now available for all 50 states. Designed by parents of children with CP, they help others find needed resources. You can find more information here.

Grants for families living with autism

ACT Today is now accepting grant applications for families living with autism.

Agencies report increase in college grad volunteers

Several volunteer organizations are reporting increases in the number of college graduates they place, as a response to "the tight job market or simply from a desire to do some good."



The Jesuit Volunteer Corps Northwest, which places volunteers in rural and urban areas in Alaska, Idaho, Montana, Oregon and Washington, accepted 101 volunteers at the start of the 2009-10 service term, a 40 percent increase from the previous year.

Teach for America and the Peace Corps also have tracked big surges in volunteer numbers since the nation's economic downturn began in the fall of 2008 -- about 40 percent for Teach for America and 16 percent for the Peace Corps. via catholicnews.com

The directior of Jesuit Volunteer Corps Northwest, Jeanne Haster, credits the President's call for involvement in community service and the signing of the Edward M. Kennedy Serve America Act in April, which increases the number of spots in the AmeriCorps service program.

"This bill will dramatically increase the amount of support for service opportunities throughout the United States, enabling more Americans to volunteer during a time when so many in our country are in need," said Jim Lindsay, executive director of the Maryland-based Catholic Network of Volunteer Service.

The network, with more than 200 member-programs, hosts an online directory of full-time service opportunities. Those logging on to search the opportunities have increased by 32 percent from a year ago. In a recent poll of network members, two thirds reported a "significant" increase in applications from previous years, he told the Catholic Sentinel, Portland's archdiocesan newspaper. via Catholicnews.com

To read the rest of the article and read about some of the students involved, click the link above.

Just So You Know

As the health care debate swirls around us, I've found myself searching for accurate information to parse out from the hysteria. The reality is that when we're in need of medical care, all of us want access to good doctors, quality of care and affordable options. Our current system isn't providing that for many people in many situations.

Meredith writes about how she'd call her vet if she was in need of end of life care, based on her experiences with her pet Itty recently. It's a sad commentary. She and Daphne Leigh Swancutt have been writing about health care issues and communication over at their blog Just So You Know.

In Daphne's post Talking Trash, she writes about all the jargon in the health care debate and how "regular folks" are being treated like outsiders in the health care reform discussions. She emphasizes the importance of reducing jargon to terms - like this - Comparative Effectiveness Reform becomes

Seeing what treatments work better than others, or
· Seeing is believing

I call this: Observation.

Then there's Meredith's post If u cn rd ths, r u literate? She writes about health literacy, a topic that doesn't get written about often enough.

As healthcare communicators, we are most concerned about that third point: creating materials that inform and educate clearly. I, however, do not limit the audience of potential readers to healthcare consumers (aka, patients). I include practitioners, providers, manufacturers and payors who, in addition to possibly failing to communicate clearly, might not fully understand what the heck they've been reading.

So why am I writing about this on Wheelie Catholic, you might ask? Am I just giving a plug to Meredith and Daphne's new blog? No, not really, although they are both smart and witty writers with professional backgrounds in health care and communications and I wish them the best in their endeavors.

I'm drawing readers' attention to this discussion because as I watch the health care community engage in social media in an unprecedented way, I see a lack of participation by people with disabilities. Certainly people with disabilities are welcome, but more of us need to show up for these discussions, whether we leave comments on blogs dealing with health care issues or engage in online discussions on Twitter. (hash tags: #hcsm, #healthcare) We can also act as a source of information about our own experiences with the health care system, not to mention durable medical providers and other health care related industries. This is a great opportunity to express both our concerns and the way we successfully navigate the health care system to those shaping health care communications.

Let's face it - we have a huge stake in what happens with any reforms and can help shape how social media is used and how communications evolve in health care - but only if we participate.

Forgiving a felon: why Michael Vick's situation is the wrong discussion

There are those who say Michael Vick should never play NFL football again, while others say he did his time and deserves a second chance. This debate is about many things, but there's an aspect of it that, as an attorney who has practiced criminal law, concerns me a great deal.

I've met many young men and some young women who get into trouble at a young age. Many times it involves drugs. If they have committed a felony, they face serious hurdles in obtaining employment. In fact, those hurdles can be so high that their chance of reintegrating into society after imprisonment is low and they re-offend.

Efforts to employ felons could stand a great deal of improvement. For example, a program like Felony Franks is found in the "odd news" section, as if the name of the program is the greatest concern.

A Chicago restaurateur has earned praise from the community for hiring convicted felons, but the eatery's name -- Felony Franks -- strikes some as bad taste.

Jim Andrews, owner of Felony Franks, said his goal is to have a chain of the hot dog stores staffed by convicted felons

I'm all for businessmen and women who create programs to hire convicted felons, because we lack enough resources. There are some solutions , like transitional employment that teaches job skills and provides a work history. There are federal and tax credits for hiring felons. But getting business people to give chances to those with a record is difficult in good times and practically impossible during a recession.

I've had many conversations with young people about to leave jail or halfway houses. They call my office and ask what to do. Terrified that they will never be able to get a job, they often cry and express great remorse about what they did. They admit they didn't think it through. I make suggestions. I refer them to people in the community who I know will extend that extra hand. I urge them to use the prison ministry program and, if appropriate, the 12 step programs in the jail to form a network of support. Help can come from many places, I tell them.

I hear back from a few who have made it - far too few. There are many more I never hear back from. I know some go back to jail and, after watching these transitions for over twenty years, I know that the hurdles they face is a part of that.

Michael Vick is not your average felon. He is an extremely talented young man and because of that talent he is at the center of many discussions. But those discussions don't solve the real problem which is, as a society, how we somehow expect those transitioning out of jail to get jobs and housing and become productive citizens, yet provide few, if any, avenues to do so.

What I'd like to see come from this is not a resolution of his unusual situation, but a discussion of what our society can do for the average person who has served his or her time and emerges into society, often unskilled, certainly without the advantages and connections that Vick has. Perhaps this is a good opportunity for all of us to think about things like forgiveness and redemption. Otherwise, we will continue to face high levels of recidivism when convicted felons who really try can't find any honest job.

A Safe Haven

A 12 year old boy, Joseph Martin, will be able to take his wheelchair into his bedroom for the first time in his life and become more self sufficient, thanks to a project by Rebuilding Together. Joseph, who lives with his single mother Mary and sisters Holly and Rebekah, has to be carried up the stairs to his bedroom every night.

Joseph, who is on an able-bodied swim team, and likes to ski, carve and fly-fish, has had 39 surgeries. He was diagnosed with cloacal exstrophy, spina bifida and chiari malformation.

After his teacher Suzanne Nesbit made a documentary of the lack of access in Joseph's home to send to Oprah, local school officials and community members who viewed it decided not to wait. They found help to build a room with access for Joseph from Rebuilding Together. The project, slated to cost $100,000, is called A Safe Haven.

The aim of the addition is to make Joseph's living quarters accessible in every way.

A custom-made shower is part of the plans. A washing machine, dryer, stovetop and microwave will be at a level he can reach, and the rooms will be designed so he will always have enough space to turn his wheelchair around.

"This will be a place for him to live independently," said Warren, who will be recruiting volunteers once the project is closer to completion. "Joseph sells this project himself. He and his family have overcome so much, and everybody's embracing it as an opportunity to do something beyond themselves."

All this is huge for Joseph, who seems to have architect Lynn Walker's blueprints memorized. With great detail, he can reel off with preciseness what will be in each of the 1800 square feet of the addition.

His eyes beam as he rehearses the architectural plans.

"I will be able to bring my wheelchair into my room," said Joseph, who presently must be carried up the stairs each day. "And I'll finally be able to close my own door." via newsleader.com

A netbook as assistive technology

An interesting article discusses using a netbook as a speech communicator for those with ALS and others. This is a much less expensive option than current speech communicators which can cost over $5000.

It refers the reader to a list of free software that, in combination with a netbook, can be used to communicate.

The software includes:

Free software that is recommended:

• E-triloquist – www.etriloquist.com – speaks what you type and has preprogrammed phrases.
• Click-N-Type - www.lakefolks.org/cnt - free onscreen keyboard if typing is difficult.
• Skype – www.skype.com – use your computer as a telephone and make video calls with a webcam. You can also use this program to type your responses while the other person speaks to you.
• Mozilla Firefox – www.mozilla.com – free web browser.
• Free virus software, such as AVG – www.free.avg.com

Please note, however, that netbooks do not generally run voice recognition software, so as this article points out, the user must have hand function or be prepared to use other technology to access the keyboard. Also it is important that the netbook have Windows XP (not all do) . A webcam is recommended as is a longer life battery.

You can read the entire article at the above link.

For more information on computer access for those with ALS, please visit here.

For more information on speaking/communication difficulties, please click here.

Quadriplegic Quandaries

A casting call for a character with quadriplegia in StarGate raises issues about disability, sexuality and respect for people with disabilities.

No surprise here- an able bodied actor will play the part. How can that be? Well, the convoluted plot includes a story about a character who is a quadriplegic from childhood but becomes temporarily able-bodied - no pun intended.

It involved assumptions about the ability to have sex or "experience intimacy"(not a surprise in light of the physically useless language below) . After an outcry, the producers issued comments, including an apology noting that the " language of the breakdown was insensitive and inaccurate, and we sincerely apologize to those who may have been offended. The audition pages that have been under scrutiny were from an early draft and released out of context. It is our desire and intention to portray both characters with dignity and respect, while remaining mindful of the ethical issues we’re raising."

Here is how the original casting breakdown read:

ELEANOR PERRY, (35-40) and quite attractive. A brilliant scientist who happens to be a quadriplegic. Affected since childhood, her disability has rendered her body physically useless. However, after being brought on board the Destiny as the only person who may be able to save the ship and her crew from certain annihilation, she is given temporary powers that enable her to walk again and to finally experience intimacy. Strong guest lead. NAMES PREFERRED. ACTRESS MUST BE PHYSICALLY THIN. (THINK CALISTA FLOCKHART).

Critics challenged what appears to be an insensitive description of a disabled person, such as calling her body “physically useless” and suggesting that she would have been unable to experience true intimacy throughout her life without the use of her arms and legs.

Gov. Corzine signs bill expanding coverage for autism, developmental disability therapies

N.J. Governor Jon Corzine signed a bill "requiring insurance companies to cover the screening and therapeutic treatment for children up to age 21 who are diagnosed with autism and other developmental disabilities."

"There is no justification, no rationalization, that makes it possible to turn our backs on people who have so much love in their hearts for their children,'' Corzine told a packed room of teary-eyed families, lawmakers and hospitals officials at the PSE&G Children's Specialized Hospital in New Brunswick. via nj.com

The bill also makes financial sense, says Joseph Roberts (D-Camden) since many toddlers are able to "bypass some special education programs" with such services.

Friendships and disability

This ESPN story about two high school wrestlers with disabilities talks about their friendship. A video is below.

Should American health care be rationed?

US News and World Report offers Two Takes on this issue : Michael Tanner of the Cato institute in Washington DC says yes and Laura Hershey, disability advocate, says no.

Laura's piece is entitled Handicap is Not a Death Sentence and Should Not be Treated as One. Here are a few excerpts:

The situations that worry me most are those involving different definitions of "futile" and "effective." Some nondisabled people think that having a disability is an intolerable state and that medical care can't be considered efficacious unless it restores lost physical or mental functions. In one glaring example, the University of Wisconsin Hospital denied antibiotics to two developmentally disabled people admitted with pneumonia. They needed lifesaving treatment, which was withheld, causing the death of one man. The other finally did receive treatment, at the insistence of his family, and survived. A disability rights group is suing the hospital for discrimination.

...

Quality of life" arguments are used to bolster these decisions, but the real driver may be cost concerns. While insurers and private hospitals generate huge profits, our healthcare system fails to serve many Americans. It's true that sometimes the opposite happens: People are pressured to accept treatments they don't really want. But overall, the right to refuse treatment is extensively protected by statute and case law and respected by medical practitioners. In contrast, the right to lifesaving treatment is not specifically protected and is no longer necessarily the default option.

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.

***

More of Laura Hershey's writings, including poems, can be found at her site.

Sen. Kennedy to be awarded Medal of Freedom

Sen. Ted Kennedy will be awarded the Medal of Freedom today, the highest civilian honor in our country. His daughter, Kara Kennedy, will be on hand to accept the award for him in Washington DC. He is presently mourning the loss of his sister, Eunice and balancing his work with treatments for cancer.

Held in high affection by colleagues, Sen. Kennedy is missed.

A lot of times I've asked myself, 'What would Teddy do?' " said Sen. Chris Dodd, a Connecticut Democrat who is filling in for his friend at the helm of the Senate's health committee. In the Senate, Kennedy "is one of the pillars," said former senator John Warner, a Virginia Republican who retired last year. via usatoday.com

Other 2009 recipients include Desmond Tutu, Stephen Hawking, Billie Jean King, Mary Robinson, Sidney Poitier , Nancy Goodman Brinker, Pedro Jose Greer, Jr., Jack Kemp, Rev. Joseph Lowery, Dr. Joseph Medicine Crow, Harvey Milk, Sandra Day O'Connor, Janet Davison Rowley, MD, Muhammad Yunus and Chita Rivera.

Eunice Kennedy Shriver 1921-2009

You are the stars and the world is watching you.
By your presence you send a message to every village, every city, every nation.
A message of hope. A message of victory.
The right to play on any playing field?
You have earned it
The right to study in any school?
You have earned it
The right to hold a job?
You have earned it
The right to be anyone's neighbor?
You have earned it

-Eunice Kennedy Shriver

Peter and my blog

Years ago in Ann Arbor I rented half of a house with a friend, with grad students living on the other side. Our residences shared a common porch and parking area in the rear, not that I owned a car since I was saving money for law school. I rode a bike to my job at University of Michigan Hospital, where I worked from noon to 8 p.m. as a clerk in the operating rooms and at night as a part time aide for my friend Andy, who was in an iron lung at night due to polio. We would hang out a bit, I'd get her ready and put her into the iron lung and then we'd read or kid around until she fell asleep.

Peter was one of the grad students across the way studying to be a social worker. We tended to keep our doors unlocked since, although the street was fairly busy, no one ever wandered to the rear of the house to enter. The front was locked. Besides, we had little to nothing for anyone to steal - just our beds, dressers, old couches and a kitchen table.

Financially I was in the best position of anyone. My roommate was perpetually unemployed and the grad students never had time to earn enough money and study. They also never had enough food to eat. So I began to fill our refrigerator with snacks and food and it was an unspoken rule that Peter and the other grad students could wander over and eat what they wanted. Peter's favorite was chocolate pudding and I always kept some in supply for him.

When I began to apply to law schools, my life became much busier. I came home one day and Peter was standing, looking forlorn, in front of our refrigerator.

"No chocolate pudding?" he asked. "Again?"

Sometimes I feel this way with my blog. When work and living with a disability - including dealing with finding help and equipment and the resources for it - gets very busy, I don't have as much to offer on here to readers. I just don't have the time or energy to blog. The image of Peter looking for pudding comes to mind and it makes me smile.

But I do have one thing here to share. Australia has released a report called Shut Out, which talks about the results of a nationwide consultation process to find out what living with a disability is like. Below is an excerpt, but the entire article about it is at the link above. Let's just say it offers food for thought.

It is a shocking picture. The report finds that Australians with a disability are often isolated and alone. Their lives are a constant struggle for resources and support. In short, the national notion of the ''fair go'' does not seem to apply to them.

More than 56 per cent of participants said they had experienced difficulties with social inclusion and community participation. More than 39 per cent said human rights and access to justice was a continuing problem. Thirty-four per cent identified problems with employment, while a further 37 per cent raised the issue of the cost of living with a disability.

....

Over and over, participants made the comment that it should not require such an extraordinary effort to live an ordinary life. Sadly, more than half of respondents identified problems with the disability service system. As a result there was considerable support for the introduction of a national disability insurance scheme, which would remove existing inequities and ensure people with a disability were able to access the support and assistance required to participate fully in community life.

However, the report also demonstrates that people with a disability are resilient and strong. They have fought hard to achieve their goals. When they have succeeded it has been despite - rather than because of - the system.

Book Announcement: On the Margins of Citizenship: Intellectual Disability and Civil Rights in 20th Century America

by Allison C. Carey (Philadelphia: Temple University Press, 2009).

via Temple University Press

On the Margins of Citizenship provides a comprehensive, sociological history of the fight for civil rights for people with intellectual disabilities. Allison Carey, who has been active in disability advocacy and politics her entire life, draws upon a broad range of historical and legal documents as well as the literature of citizenship studies to develop a “relational-practice” approach to the issues of intellectual disability and civil rights. She examines how and why parents, self-advocates, and professionals fought for different visions of rights for this population throughout the twentieth century and the changes that took place over that time.

Carey addresses the segregation of people with intellectual disabilities in schools and institutions, along with the controversies over forced sterilization, eugenics, marriage and procreation, and protection from the death penalty. She chronicles the rise of the parents’ movement and the influence of the Kennedy family, as well as current debates that were generated by the impact of the 1990 Americans with Disabilities Act.

Presenting the shifting constitutional and legal restrictions for this marginalized group, Carey argues that policies tend to sustain an ambiguity that simultaneously promises rights yet also allows their retraction.

Readers can order the book using the Temple University Press webpage at http://www.temple.edu/tempress/titles/1934_reg.html

Sen. Harkin's statement on Senate vote to confirm Judge Sotomayor to the Supreme Court

Sen. Harkin's statement specifically addressed disability cases.

I also firmly believe that Judge Sotomayor will be an important and needed voice on the Court to ensure proper effect is given to our most important statutes, such as the Americans with Disabilities Act (ADA), the Civil Rights Act, and the Age Discrimination Employment Act (ADEA), so all Americans receive the fullest protections of the law.

“This is illustrated in an area of the law that I care deeply about – disabilities rights. Unfortunately, as many in Congress know, the Rehnquist Court repeatedly misread the ADA, ignored the intent of Congress and narrowed the scope of individuals deemed eligible for protection under the ADA. The result of these decisions was to eliminate protection for countless thousands of Americans with disabilities. These flawed, harmful decisions were reversed last year when Congress unanimously enacted the ADA Amendments Act.

He goes on to talk about the Bartlett learning disabilities case as well as Judge Sotomayor's understand of the ADA. She wrote:

“For those of us for whom words sing, sentences paint pictures, and paragraphs create panoramic views of the world, the inability to identify and process words with ease would be crippling. Plaintiff, an obviously intelligent, highly articulate individual reads slowly, haltingly, and laboriously. She simply does not read in the manner of an average person. I reject the basic premise of defendants’ experts that a learning disability in reading can be identified solely by a person’s inability to decode, i.e., identify words, as measured by standardized tests, and I accept instead the basic premise of plaintiff’s experts that a learning disability in reading has to be identified in the context of an individual’s total processing difficulties.”

and Sen. Harkin notes:

“As the Congressional Research Service noted, “She anticipated the legislative discussions surrounding the ADA Amendments Act by finding the use of self accommodations did not mean that the plaintiff was not an individual with a disability.”

...
“The contrast with Judge Sotomayor is telling. In Parker v. Columbia Pictures, she addressed the very same question in the disabilities context – whether a plaintiff need show discrimination was a “motivating factor” or “but-for” cause under the ADA. In contrast to Justice Thomas’s opinion in Gross, she carefully analyzed the statutory language, intent of Congress and precedents and noted that “Congress intended the statute . . . to cover situations in which discrimination on the basis of disability is one factor, but not the only factor, motivating an adverse employment action.”


His full statement can be read here.

Medicaid services are ranked for people with developmental disabilities - Related Stories - CEC SmartBrief

Medicaid services are ranked for people with developmental disabilities - Related Stories - CEC SmartBrief

Shared via AddThis

On being heard: assertiveness skills

Far too often when I speak with those living with disabilities, I hear stories where their time and energy is wasted. Sometimes they are dealing with trying to get a wheelchair fixed, only to find that parts take weeks or even months to arrive. Other times they can't find the services they need because they were referred to the wrong place.

There are far too many times people say to me that they don't feel heard in these situations. It can be discouraging to waste time and energy, particularly on tasks that are disability-related and, let's face it, have to be done in addition to everyday tasks like shopping and other things.

I've found a few good ways to improve these situations. One is to use assertiveness skills. This article includes a few questions to ask another person that might improve communication, such as:

Have you heard me?
Do you understand my point of view?

It also says that it's important not to let people ignore you. This is an experience that is far too frequent sometimes with places that treat disabled customers in patronizing ways. I've seen transactions where I'm paying for goods or services and a business has ignored my request for a reasonable accommodation. Repeating a request more than once doesn't usually work, as this article indicates, but there are other actions you can take as a consumer that will empower you. Always remember that there's usually more than one person you can deal with. Don't hesitate to ask for a manger or supervisor. If it can't be resolved and it's a situation involving the Americans with Disabilities Act, write down the information and contact them at their 800 number (on my sidebar).

Some business owners, whether they sell disability-related products or not, are savvy enough to know that a customer who feels heard is a customer who will return. Keep in mind that managers may not know what employees are doing or how they are treating customers. So it's important not to allow one person's criticism to dissuade you. Stick to the facts and try not to personalize what happens.

On the other hand, it's always good to do a reality check with someone you trust to see if there would be a better way for you to handle a situation, but don't give that power over to a clerk or manager in a store - in other words, to the person or place with whom you're having issues. You can always return or make a call later if you want to strategize an approach. Sometimes this may be a positive thing: cooling off is a legitimate way to handle some situations, as long as you follow through later. The more you deal with conflicts, the better your skill base will get. And, as a person who is disabled or nondisabled, it's realistic to face the fact that we live in a world where being assertive will eventually not only come in handy to save you time and energy, but is a necessary skill to keep you mobile and independent.

Barriers to Home and Community Based Home Living

This series by UCP of Middle Tennessee discusses ongoing barriers that face people with disabilities for living at home or in community based home living, despite the Olmstead case. It provides a background as to why the Community Choice Act is crucial legislation.
Part I: Isolation in nursing homes and housing discrimination

Part II: Institutional Bias and bureaucratic barriers based on medical model that warehouses people in nursing homes

Part III: Universal design and affordable, accessible housing; home based support and the growing need for such accommodations and services in our communities

Headlines that make me cringe

The stories that are covered in the media are then spread throughout Twitter with google searches. If you search the word "quadriplegic", for example, there's usually a smattering of inspirational genre stories, along with headlines that often make me cringe.

Take this one: Man pursues aviation, full life despite being quadriplegic

Despite being quadriplegic ? How's that for a back handed slap?

Then there's this story:

Quadriplegic law school grad is allowed to take bar exam

Big of them. I mean, she finished law school and all that stuff. Seems that because the state paid her bar exam fees with a check rather than a credit card, there was a tussle about it. Nothing else. But it sure sounds like she had to have permission, doesn't it? Uppity quad.

Then there are the fear headlines about living alone, like this one:

Quadriplegic targeted in Clay home invasion

That brought on about half a dozen calls from anxious friends. Thanks a bunch. Wonder what the stats are on home breakins anyway, if you broke them down according to whether people were quads or not. Bet more able bodied people get robbed. Just sayin'.

I'm going to finish my coffee and start work now. Don't tell anyone. Because they'll come up with some kind of a headline that'll ruin the whole thing.

Setting boundaries with caregivers

If you google caregiving, you won't find much written about how those of us with disabilities can go about setting boundaries about how we get our care, although there's a lot written about how caregivers should set boundaries with those they assist.

Articles about caregiving and stress also tend to be written for caregivers, not for people with disabilities. Yet those of us who deal with aides have to manage scheduling and disputes about who should do what, how often and in what manner on a daily basis. Sometimes we face aides who constantly talk about their own personal problems or try to hit us up for cash to solve those problems. Juggling the different personalities of caregivers can also be difficult. These relationships often require different approaches and compromises. Scheduling our needs for care with multiple people around our work schedule and still having time to have a social life can be challenging. Yet there is very little written about it.

Having paid caregivers places you in the position of being an employer, with the responsibilities that entails. This includes being a supervisor and can create one on one situations that feel very uncomfortable and can get personalized quickly. Despite this, it's important to maintain your boundaries so that you get the care you need.

For example, I once had an aide who was often very late and, on top of that, resentful when I asked her to do simple things that were part of her job. When I explained that I had a schedule, too, she told me that her boyfriend was disabled and he kept thinking of things for her to do as she was ready to leave the house. My gut reaction was to feel sympathy for her personal situation. But after going without meals a few times, I realized that I didn't want my schedule to be thrown off every time I scheduled her, nor did I want her resentment toward her living arrangement to carry over into my care situation. We came to a mutual decision that it would be better for her to work for someone else.

This is the kind of example that shows how important it is for those of us with caregivers to also have boundaries. Perhaps we have commitments--or needs- where we can't sit around and wait for caregivers to show. If our disability prevents us from preparing food, for example, having a reliable and timely person show up is important. If part of their job is to make us lunch, then showing up at 9 pm is unacceptable. Sometimes compromises can be reached, but it's up to us to know what we can compromise about, so that our care and quality of life remains manageable and our health isn't adversely affected.

Ultimately, both the responsibility - and authority- of hiring and firing needs to be handled in a way that is mutually respectful, but ever mindful of the reality that a caregiver who can not, will not or does not provide adequate care within the boundaries we set, may never be a good fit for us.

Interview with Paralympic swimmer Mallory Weggemann and her parents

"I wanted back in the pool," Mallory says in this interview where she discusses how she resumed swimming after paralysis. Her goal is to swim in the Paralympics at London. Here's a link to a Paralympic Spotlight piece. I wish her good luck.

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And you got us feelin' alright....

My blogging friend Blue Girl would have loved this. She's always keeping the music alive over at her blog.

Last night my friend-who-was-recession/unemployed-but-whew-got-a-job treated me to the Elton John/Billy Joel concert in Philly. It was great. I've never seen either of them in concert before, so it blew me away to see both of these musical talents together.

I found this clip on YouTube of Piano Man from another performance and it gives you an idea of what it was like. Very thrilling when the audience sang back to Billy Joel near the end. Here's a review. If you get a chance to see either of them in concert, go.



*
Speaking of music - if you're into Mozart, two pieces of his were recently played for the first time. You can listen to an audio clip and read about it here.

Wheelchair accessible treehouse

A beautiful day outside, so thought it would be great to put up this video of a wheelchair accessible treehouse.