May Day! Now that I have your attention....

...may I introduce a great introductory post by Lady Bracknell to start off Blogging Against Disablism Day? In her post, she writes about people with disabilities :

"You could join us at any time. Just by taking your eyes off the road for a split second. That’s all it takes. If that happens, will you be special? Will you be brave? Will you just sit there quietly and accept it if no-one will employ you? If you’re prevented from going where you want to go and seeing who you want to see? If no-one takes what you say seriously any more?

No? Then why should we?

We are one in seven and we will remain silent no longer. Our impairments can’t be changed, but our exclusion can. On May 1st our voices will ring out in cyberspace as never before. We’ve got a lot to say, and we want you to read it. Visit Diary of a Goldfish on May 1st for a list of links to everyone who has made a commitment to speak out on Blogging Against Disablism day."

Please scroll down two posts to the graphic and click on it to join us!

Do you read CatholicDaily.org?

I do! A few of my favorite bloggers write for it - you'll see them leaving comments here occasionally. Julie from AdoroTeDevote has a great post up entitled "Like Little Children" and Amber of This Catholic Journey has written a post about conversion. Mark Shea writes about Super Spirituality - and the pitfall that can be. So click above and check out their latest edition.

I'm going to be BADD - Come join me!

That's right - BADD- Blogging Against Disablism Day! Feel free to join me - click above to go over and sign up to post something about disablism tomorrow May 1. It's open to everyone - and I do hope some of my able bodied readers and allies will join up too!

New interactive feature: Untold Stories

From a reader:

The story of two coworkers: a kidney donor - the recipient - and a life saving sacrifice. This article about two women in Seattle was sent by an anonymous reader as one of the Untold Stories that gets buried in the (often sensational) news.

"Gaeb, who expects to go back to work in July, said Jenkins' gift frees her from dialysis. That gives her 17 more hours of free time each week, she said, time that she can spend with a grandchild.

What kind of a person voluntarily interrupts her own life to save someone else's? How was it that Jenkins didn't do what so many of us do each day -- get so involved in our own lives, problems and activities that we turn our backs and hope someone else will take action?"

Via Seattle pi

If you see an Untold Story , please email it.

Outdated US policies keep many people with disabilities from services they need

""Society must do more now before a crisis is upon us," Alan Jette, director of Boston University's Health and Disability Research Institute and head of the Institute of Medicine panel, wrote in a report.

"Far too little progress has been made in the last two decades to prepare for the aging of the baby boom generation and to remove the obstacles that limit what too many people with physical and cognitive impairments can achieve," Jette added.

The report looked at a wide range of issues affecting the disabled such as accessibility of buildings and other places, gaps in public programs such as those paying for wheelchairs and scooters and health insurance coverage."

The report noted the growing number of disabled veterans as a result of the war and went on to say:

"Between 40 million and 50 million Americans -- roughly one in seven -- have some kind of disability, the report said. The number is expected to balloon over the next three decades as the baby boom generation ages.

"Inaction will lead to individual and societal costs -- avoidable dependency, diminished quality of life, increased stress on individuals and families, and lost productivity," the panel said in a statement."

Via Yahoo News

These are many of the issues which appear and re-appear in my advocacy work with people with disabilities - lack of quality of life, lack of access, barriers to obtaining necessary equipment and employment, stresses on caregivers/family/individuals, and gaps in public programs. If you're interested in reading more about any of these issues , please click on the tags below.

One thing I do disagree with is that a crisis is not pending-- it is already upon us, for those of us living with disabilities who are not receiving necessary services and equipment and employment....our quality of life is already lowered.

Who is now Reading This?

May-be one is now reading this who knows some wrong-doing of my past life,
Or may-be a stranger is reading this who has secretly loved me,
Or may-be one who meets all my grand assumptions and egotisms with derision,
Or may-be one who is puzzled at me.

As if I were not puzzled at myself!
Or as if I never deride myself! (O conscience-struck! O self-convicted!)
Or as if I do not secretly love strangers! (O tenderly, a long time, and never avow it;)
Or as if I did not see, perfectly well, interior in myself, the stuff of wrong-doing,
Or as if it could cease transpiring from me until it must cease.

-Walt Whitman, Leaves of Grass

A Catholic sermon against euthanasia: life which is unworthy of being lived

"For the past several months it has been reported that...patients who have been suffering for a long time from apparently incurable diseases have been forcibly removed from homes and clinics. Their relatives are later informed that the patient has died, that the body has been cremated and that the ashes may be claimed. There is little doubt that these numerous cases of unexpected death in the case of the insane are not natural, but often deliberately caused, and result from the belief that it is lawful to take away life which is unworthy of being lived."
-- Bishop Von Galen, Sermon Three in 1941 against the Gestapo

Upcoming disability events

Over at DisStudies, Temple U - a post about upcoming disability events across the country - from films to festivals! Click above to see what's going on.

Disability blog carnival 13

The theme is What Box? And don't forget (scroll down) about Blogging Against Disablism Day on May 1!

Woman in Wheelchair Killed At Railroad Tracks

In Australia, a woman in a wheelchair was killed while trying to cross railroad tracks. Here's the news coverage:

"As she was crossing, her wheelchair for some reason has fallen over and she has been thrown out....She has attempted to get up but unfortunately the train has come through and she has been hit." Via news.com.au

A one sentence description of the accident Via www.perthnorg.com.au

I chose this story to highlight a problem that has been addressed before in message boards for people with disabilities: the dangers to wheelchair users as pedestrians . What's always interesting in these stories (and they do appear in the news in all countries) is that we rarely go behind the fact that someone in a wheelchair was killed, whether by a train or automobile, lack of proper crosswalk markings and curbcuts, or a number of other factors.

Why was the woman crossing the railroad tracks? Probably the only way for her to get around. The article states that she fell out, vaguely alluding to the fact that no one knows why. I can make an educated guess as a wheelchair user that her tires got stuck as she tried to pop a wheelie to get over the tracks.

And there are issues like this that these articles don't address :

access to transportation
building accessible crossings
community services (perhaps caregiver hours)

Instead we just don't know, do we? These very brief , but frequent , articles memorializing the death of a deaf person, blind person or wheelchair user, whether they happen in the US, UK, Australia or anywhere else, remind me of how we still distance ourselves from the real issues.

If you click above, you'll see a report by an Autralian taskforce on wheelchair safety at railway crossings indicating the measures that still need to be taken.

Check out the comments on this site: Wheelchair pedestrian and curbcut issue

The comments on this site (although from 2001 so a bit dated) show the range of opinions on a case where a jury awarded damages when a curbcut was not placed in the crosswalk as required by the ADA, resulting in a wheelchair user being hit by a vehicle.

I'd be interested in feedback from readers on this one: are the curbcuts in your area in alignment with crosswalks? Because I know, despite efforts to change them, in my travels I see lots of places where they are not.

This is another cause of wheelchair pedestrian accidents.

“In my faith, the Jewish faith, there is a religious obligation called tikkun olam, or to make the world whole, or to correct error and end injustice. And that responsibility is found among people of good will in every faith.”
-Mayor Bloomberg, speaking this week about a plan to clean air in parts of NYC where children are hospitalized for asthma at four times the national average
Via NY Times

Taking a road trip?

This is way off topic but it's a fun internet site if you travel a lot.

MrBreakfast.com is an internet site that reviews various breakfast foods. I've been on the hunt for different kinds of breakfast foods (not my favorite meal!) and this site has guided me toward some healthy choices.

Today I've linked to a breakfast restaurant finder it also has for most cities/ states in the US. I typed in my state/city and it came up with one of my favorite diners with a pretty accurate review as well! So give it a try. I know I'll be checking it the next time I travel. And I also added reviews describing the accessibility of a few places as well as long as I was over there :)

Will you take me home with you?

I volunteered at a youth correctional institute in the Midwest for a year before I chose my career. I also worked at a hospital. I hated working at the hospital and I loved working with the kids.

But it wasn't that simple. As a matter of fact at times it was heartbreaking. I would drive into the facility, leave my personal belongings in a bin, grab a name tag and then head over to the classroom wing where I (tried to) teach a math class for 14 year old boys. I taught the class twice a week and every time there were different faces. Kids were constantly transferring in and out, although there were a few "long termers". They were the kids who had committed violent crimes - arson, robbery, or assault.

But there were a few other kids there who committed much lesser offenses - such as truancy and running away from (sometimes an abusive) home. And there was one boy there whose status defied definition.

The other kids called him slow. His IQ tested in the borderline range according to his records - lower than average but above what might be considered a cognitive disability. He had red hair, freckles and a great smile - the few times I saw it.

But he didn't belong there. He knew it, the other kids knew it and I knew it. He didn't want to be there and the other kids didn't want him there. They didn't know what to do with him. There was a pecking order there. The weaker boys were ruled by the stronger ones but even those who were the biggest bullies didn't want to pick on this kid. Their code didn't allow it.

So why was he there? I went to the office and asked after I spent three classes having him beg me to take him home with me. I was told that several foster homes couldn't handle him and he wouldn't go to school so he was a truant but in reality they were warehousing him there because they couldn't find a placement for him. I was also told to keep my nose out of it.

Which, try as I might, I couldn't do. It came to a head one day when I got in my car, started to drive home and he popped up in my back seat and announced he was coming home with me and how wonderful it was! I turned the car around to take him back and in the short ride between Point A and Point B to drop him off, I decided this situation couldn't be ignored.

I called a couple I knew from the office phone and begged them to take this kid. They were registered as foster parents and such loving people that I knew this kid would get what he needed there. They agreed to take him for a month or so. Papers were drawn up and he was sent to them. As I suspected things worked out and he stayed there long term.

Of course back in my math class chaos reigned. My glasses were stolen at times in hopes that I wouldn't be able to teach or see the lesson. The math textbooks were turned into paper airplanes. I was introduced to slang I never dreamed of. I did manage to teach a few kids fractions and multiplication. And I found one kid a home.

Institutionalization of people with disabilities. It's been going on for years.

"Coaching the Grief-Stricken"

In this week's issue of Sports Illustrated, there's a great piece by Rick Reilly in his column the Life of Reilly. He writes about how he heard from a truck driver named Mike Lemke who nominated his 19 year old son Cory for Faces in the Crowd. Cory had died in a motorcycle accident recently.

Colts coach Tony Dungy, whose own son died three days before Christmas in 2005 by hanging himself, called Mark up. They struck up a phone and email correspondence to support each other and Mark was in the stands when the Colts went to the Super Bowl, courtesy of Dungy.

It appears, moreover, that since his son's death, Tony Dungy has struck up a number of friendships such as this with others who have lost loved ones - fathers, a young kid who lost both parents in a car wreck, etc.

"I'm awfully grateful to Tony Dungy," says Lemke, who , like the coach, lost his son. "He helped me keep my faith. He taught me that he and I - we're not alone."

So many people grieve alone. I get emails from folks who suffer terribly after losing a loved one . What a great reminder this is that by reaching out to others, we can enrich their lives and our own as we journey through such experiences.

"In Maryland , A Fight to the Finish Line" - The story and my commentary on the high school athlete who wants to be included

[visual description: A photo of Tatyana in her everyday wheelchair.}

This news article updates the situation about Tatyana McFadden, a Paralympic high school wheelchair racer who has filed several lawsuits for the right to be included on her high school track team at events and have her results count in the team final.

According to Tatyana, she is now ostracized as she awaits a decision on the second lawsuit. Able bodied athletes have teamed up - against her - to the point where she practices alone, socializes with non-athletes at school and gets support from wheelchair athletes who understand and support her fight to be included. This is ironic since McFadden's desire to be included stemmed from wanting to be a part of a team - and be included as a member.

Able bodied runners - and some coaches - are threatening a boycott if McFadden wins her second lawsuit, claiming they will take runners off the track to leave her to race alone. In my opinion, they have already done that. And maybe the judge hearing this case needs to think ahead and put a sanction in place to disqualify teams who defy his court order, should he decide that McFadden has a right to race with her peers.

We can review the arguments here about what's fair to the sport, whether teams with wheelchair athletes would benefit from this ruling(not so far since judges penalized McFadden for a rule violation based on another runner's statement at the state championship, causing her team to lose first place), whether other athletes may be injured (none ever have with her racing) and on and on. What's interesting is that there is no debate going on here about ways to address these issues to include a wheelchair athlete.

It's part of the process of inclusion - the backlash against change and adhering to the status quo. We need to look at the history of disabled people - and other minorities - in this country to get the full perspective here. We achieve inclusion in different areas as time goes on. Education, employment, transportation , housing - and sports. To some advocates, inclusion in sports is not as important as other areas, but it is part of the overall picture. It has to do with having a society that includes all its members.

Would people be so upset if Tatyana raced and came in last or near the end all of the time? Would that better fit preconceived notions? When they argue that she has an "advantage" due to her wheelchair, do they realize how ridiculous that sounds? She uses a wheelchair all day long - it's not as if she climbs into one just to race! (I find it very interesting in reviewing the articles over the past several years that she is very seldom seen in her everyday wheelchair.) And let's face it - she's a Paralympic athlete. If there was an able bodied runner who had won an Olympic medal , wouldn't they expect her to be a valuable team member? How often do teams have years with good runs because they have talented athletes on the team? Is it somehow wrong if that athlete is in a wheelchair?

Those of us with disabilities who participate in the world know that there are many times when, due to the fact that we do things "differently" because of our disabilities, we are viewed as being inferior. Employers worry whether we can do the job. Landlords worry if we'll be good tenants. The assumption is that we cannot make the grade and meet the standards. Yet when we work hard and succeed our efforts may be discounted as coming from special treatment when in reality we are the ones who have achieved.

Inclusion does not mean that we fit into the world as it is. I am reminded of the words of Fr. Michael Lapsley:

" Don’t include us in your community, but together we must create a community which is for all of us."

How sad it is that a young girl's efforts toward inclusion have resulted instead in ostracism.

Anti-obesity group wants to fire Shrek...

...from ad campaign, saying he has too many ties to junk food ads to be a good role model to kids.

Maybe they should talk to the donkey.

I love this logo

The Disabled Rights Action Committee in Utah, partially sponsored by the Catholic Campaign for Human Development, works toward improving all kinds of conditions for people with disabilities. Right now they've filed a housing lawsuit to get better access.

But there's a really interesting story behind their logo. Years ago when the group tried to get lifts on buses for access to transportation, a "crawl on", where members got off and on buses by crawling - failed to get the attention of the powers that be.

Sooo...
"The next week, about thirty-five people with disabilities went to Main Street and 1st South and stopped every bus in the system by placing their wheelchairs in front of the busses. New fliers were distributed, complete with a skeleton with thumb out, announced: “I’ve been waiting nine years for the bus. How about a lift?"

The buses with lifts were ordered.

Where Stephen Hawking is going....

...today a 14 year old took Hawking's place during preliminary preparations for a Zero G flight tomorrow. The student , who is the same height and weight as Stephen Hawking, told reporters that every stage of the flight was re-enacted.

"On Thursday, the 65-year-old genius, who has a degenerative nerve disease known as amyotrophic lateral sclerosis, will roll his high-tech wheelchair out to a converted Boeing 727, take off from Kennedy Space Center's shuttle landing strip and be guided into position for what's basically a roller-coaster ride in the sky. During the top half of the plane's parabolic ups and downs, Hawking and his fellow fliers will be able to float in the air for about 15 to 20 seconds at a time.

It will the first time in decades that Hawking has been in the air free of his wheelchair - and that poses lots of logistical challenges: Exactly how will he get onto the plane, into his seat, then into a preparatory prone position atop a specially designed mattress? What will it feel like when his coaches and a nurse gently lift him up for a zero-G float? Where should his assistants, doctors and camera operators be placed? How close should the other fliers get?"

Via MSNBC

And where will the eighth grader be when Hawking goes into flight? In school, he says.

UPDATE :

After the flight Hawking said "It was amazing...space here I come."

"Many people have asked me why I am taking this flight. I am doing it for many reasons," he said before the flight. "First of all, I believe that life on Earth is at an ever increasing risk of being wiped out by a disaster such as sudden global warming, nuclear war, a genetically engineered virus, or other dangers. I think the human race has no future if it doesn't go into space. I therefore want to encourage public interest in space."

"Where do you think you're going?"

Via A Different Light

Hearing for baby Emilio postponed until May 8

Attorneys for the child's mother now have more time to try to find another hospital to take the child after a court postponed the hearing on the futile care law case from April 19 until May 8. Click above to read the article.

Disability at top of HUD list for discrimination complaints

People with disabilities are being discriminated against in housing in large numbers according to this HUD report. Click above for a link to the article as well as information to help you if you need to file a complaint.

The ADA Game

Want to try your hand at being a disability advocate?

Well now you can do just that online! Click above to play the ADA Game - where you work with a team of others to solve accessibility problems and other issues together.

Saintly Bad Behavior

In this Slate article by a Jesuit priest, he writes about the common misconception that saints are not, well, human. Makes for interesting reading - and thinking.

HBO : Thin

This is part 1 of 11 on HBO's series Thin about eating disorders. I've had a number of readers email me to request more posts on addiction and eating disorders and I found this series on anorexia informative and well done.

The other episodes are available via a link to this one at YouTube.

Lifekludging a UMPC

Dave over at lifekludger test rides a UMPC to see what potential it holds for those of us with upper mobility impairments. Previously he has reviewed Tablet PC's- and it's interesting to see what benefits (or not) this smaller piece of technology holds.

As a quadriplegic, Dave uses a mouth stick. He writes:

"One of the things I experienced using a touch style computer UI was an uncanny sense of getting a bit of my lost freedom back. This is evident in two tools in particular for me, InkArt and the Snipping tool.

If you don’t realise how much of an impact a pen or pencil, (as in the physical, long sticks you hold in your hand and write with) has made on human expression, try living one single day without using one. Now multiply that by 365 and then by 25 and try it. That’s how long it’s been without being able to hold a pen and write. Now, I do hold a pen in my mouth and write but it’s limiting. The ability to scribble is just so freeing.

And being able to use InkArt to use brushes and colour and just ‘play’ with design, and do it all on my own, is something incredible...."

He also found Snippet, a program that allows one to circle important information, important. These programs and the touch capability allowed him to capture deas without typing. And:

"Bringing that freedom of drawing over into a work context, I find I’m increasingly needing to express to colleagues at work concepts and ideas and how I see projects we are working on should hang together. I’m limited in expressig these to using some app to draw objects like Visio or Powerpoint whereas a sketch on a whiteboard’s what I really need to be able to do."

This is excellent and useful information for those of us who are looking for technology to assist us in better productivity, expression and quality of life. Thanks Dave.

Click above to read his post!

"Understanding Empathy: Can you feel my pain?"

In this NY Times article, a therapist writes about the conundrum facing many of the patients he's seen over the years - can others understand our pain without experiencing it? He believes they can. Click above to read his article.

"Saints to Lean On:Spiritual Companions for Illness and Disability"

This book comes highly recommended by a friend who wrote me that "This is a highly spiritual book. Although I take issue with lumping illness and disability together, some of your readers might find this a useful resource so thought I'd send it along."

Email request: Tools for adaptive gardening

It's spring! And a reader wants to know where to find tools for adaptive gardening for someone with arthritis or grip issues.

I've linked to one source above as a start and invite others to leave comments .

"I never met you but I do care"

[visual description: Photo of a person holding a cell phone to answer a call.]

Ryan Fitzgerald is 20 years old and lives with his parents. He is unemployed and self describes as having alot of time on his hands so he put up a YouTube video telling people they could call him because he cares and is a good listener. He said he was inspired by Juan Mann's free hugs YouTube video.

He's received over 5000 phone calls and text messages on his cell phone since Friday. Today when the free weekend minutes stop, he says he can't just start turning people away, noting that they need someone to talk to.

Frequently Asked Questions about Spina Bifida

Via Spina Bifida Association site

Spina Bifida

This video describes what causes spina bifida and explains why its severity varies from child to child.

Low Tech Hands Free Cell Phone Kit

Via Gizmodo

Disability History Museum

"Our Mission is to promote understanding about the historical experience of people with disabilities by recovering, chronicling and interpreting their stories. "

I just added this link to the sidebar too!

Disability History Association - book list

I received an email from a reader who said how much he enjoyed the 504 posts and would like to do further reading in disability history. The Disability History Association has published a list of books in the area (a link is above) compiled by Penny Richards.

Enjoy!

Familes helping Families of Greater New Orleans Holding Rally on May 8

This group's mission is:

"Our mission is to enable and empower Louisiana families of individuals with disabilities through an effective coordinated network of Resources, Support, and Services. Our vision is to ensure all individuals with disabilities have the opportunity to attend school, live, work and recreate in their community with typical peers."

I have spent some time this week reading about the difficulties facing parents trying to find educational resources for their children in the New Orleans area - those who are trying to return there to resume their lives and those who are relocating there as part of the effort to attract talent and needed help.

I am concerned for all of the children from New Orleans who are behind in their school studies as a result of the hurricane. Many face "make up time" and need high quality teachers to help them catch up on their studies to get to a proper reading level. Teachers are badly needed in the area, especially those who are experienced. And there are children waiting to get into school which is putting them further behind in their studies.

This is an even greater difficulty for parents of children with special needs children. Parents are finding it difficult and sometimes impossible to find the resources they need.

Families Helping families of Greater New Orleans is holding a rally called Disability Rights Day on May 8 at the State Capitol in Baton Rouge about The Right to Receive Services between 2 - 3:30 p.m. (For information about Transportation to Baton Rouge, contact Families Helping Families of Greater New Orleans 504-888-9111 or 800-766-7736)

As New Orleans is rebuilt, a priority needs to be put on the education of all children.

Voices from the 1977 504 Sit In

[visual description: Demonstrators during the "sit in".}

Ursula McGuire, Demonstrator

I told you about the spiritual. That's a great side that doesn't know what it's missing. I think most disabled people don't realize how strong they are spiritually and I think that's a lot of the part of what the consciousness raising was: We are strong. We can hold this building and fight at all costs because we are strong, and society doesn't want to face this particularly because of ignorance and fear.


Tom Blockus, Demonstrator

I am a Rehab counselor. I feel that if I did not participate in this demonstration that my involvement in the field would be hypocritical. What it will do for others is obvious. That is, education, employment, transportation. What will happen if 504 is signed? Disabled will flow into the mainstream instead of being a hidden minority as they have been. That's the real value of the Regs. I feel it is the least I can do and at the same time, it's the most I can do. This demonstration is a very draining experience. It taxes the soul. My whole aura, my gestalt, has been challenged and it's one of the most positive things that has ever happened to me. It's going to take years for me to realize how my disability will really help someone else. Years for me to appreciate how I can help someone else.

Via dredf.org

We were there: 504 Memory

TVS over at Title Varies Slightly, writes about picketing at the federal building with her mom - for the right to an education and a future:


"Why were we there? Why was a Presbyterian housewife — a real lady in the best senses of that word — encouraging her daughter to cut school? Spending the day blistering her fair skin with sunburn (the straw hat wasn’t enough, and it was unusually warm) pushing her daughter’s chair so her daughter could hold the protest sign, “Give me my rights!”

To fight for my future. Because at that time, I barely had one."

Click above to read the rest of this post.

"504 Sit In Anniversary"

Over at the Gimp Parade, Kay posted about this important anniversary in disability history. She writes:

..."at age 38, I belong to the first generation of disabled Americans who were allowed to attend grade school and high school with our nondisabled peers. There were exceptions, but physically disabled children (and definitely developmentally disabled children) were routinely excluded from all public school interaction with their nondisabled peers, sometimes entirely because they rode on wheels. It is because of the heroes of the 1977 504 sit-ins who demanded that the Rehabilitation Act of 1973 be fully implemented. They said they would wait no longer and they demanded equal access to public buildings. The ADA was possible because of this. My education and ability to sit here and type today was profoundly effected by the actions of these disability rights heroes of the past. Just thirty years ago."

Just thirty years ago.

Think about that for a minute.

Click above to read the rest.

Chart on Categories of Bullying Behavior

I use this chart when dealing with school systems about bullying of a student with disabilities. Sometimes I am called in cases where this is occurring.

It helps staff recognize behaviors that are bullying in three categories: physical, verbal and social - which otherwise might be dismissed as acceptable. The problem is that when level 1 behaviors escalate to level 2 and 3, the behaviors become more difficult to manage, particularly in groups. For example, in Level 2 it is typical for the bully to blame the targeted student and unfortunately the staff may join in on this not recognizing this as an escalated bullying behavior. I know of cases where students with disabilities have had to transfer schools because bullying had escalated to such a degree.

By recognizing bullying behaviors early, staff can better handle situations and refer students to appropriate resources, whether it be counseling or disciplinary referrals.

As an aside, adults may engage in some of these behaviors toward other people (with or without disabilities). Spreading rumors, engaging in gossip and gestures and nonverbal behaviors are bullying toward another and escalate as you can see on the chart. I have seen this occur as part of a "herd mentality" in which the majority practices exclusion , a level 2 (and sometimes 3) behavior that you can see in the chart.

Reach Out and Care - Adopt a Chair

ROC Wheels provides customized wheelchairs to those in third world countries, with a special emphasis on children.

"20,000,000 people in developing countries require wheelchairs for mobility. Approximately 6,700,000 of these people are children. A very small percentage of these people have a wheelchair and even fewer have one that is fit to their needs. ROC Wheels has put special emphasis on developing wheelchairs for children up to age 15 regardless of their level of disability. ..We realize the importance of providing the right wheelchair that helps each person gain independence, interact with their peers and become a more active member of their community. Our ultimate goal is to help people help themselves.."




Please visit their website to read about their work.

NAMI provides resources on mental health issues and Virginia Tech

"The tragedy raises sharp issues about the nation’s fragmented mental healthcare system, which NAMI has raised for years. Some of them are now being debated in the news media and legislatures, including Congress. They range from stigma, privacy rights, court-ordered treatment, gun control, mental health and suicide prevention screening programs, and mental health services on college campuses.

The purpose of this Web site page is not to engage in debate at this time, but to provide information and resources to people who are still seeking to understand and cope with tragedy—and to direct them where they can express support to the Virginia Tech community."

Via NAMI website

National Alliance on Mental Illness consists of individual living with mental illnesses, their families and friends.

Medicare may put dialysis patients at risk

"A flawed Medicare payment plan encourages aggressive use of a risky and costly anti-anemia drug on many kidney dialysis patients, say researchers who warn the system should be changed.

A new study finds that for-profit dialysis chains give higher doses of the drug than nonprofit dialysis centers. That practice may be putting patients at risk of deadly side effects, some experts said.

The drug is Epogen, and Medicare pays more for it than any other single drug: $2 billion in 2005. "

Via MSNBC

To read the article about dialysis profits click here.

Disabled vets sue U of Michigan stadium

"..the suit claims that U-M officials are fully aware of federal accessibility laws that dictate the number and location of wheelchair seating for stadiums, but have "intentionally" avoided compliance with the Americans with Disabilities Act even as they proceed with a $226 million renovation of the Big House.

...according to the lawsuit filed in U.S. District Court in Ann Arbor by the Michigan Paralyzed Veterans of America.

U-M officials have maintained they are fully committed to accessibility for all fans. Improving access and seating for disabled patrons were main concerns when considering the renovation, which calls for 83 luxury boxes, officials have said. The area to be renovated will indeed comply with the federal ADA, they maintain."

However the vets maintain that the renovations were staggered to avoid compliance with the ADA requirements of providing full accessibility when renovations are made.

Via Detroit News

Hallelujah Nuns - with captions!

Via Rev Gaventa NJCIM list serve

"Where have all the prophets gone?"

Over at Out of Ur, an interesting post on the subject of how modern day churches are not conducive to prophetic voices, that tend to "rock the boat".

The post suggests three reasons why:

"1. Seminaries are not training prophets
My seminary education (and I assume my experience was not too different than most church leaders’) primarily equipped me to teach the Bible. Professors taught me Greek and Hebrew, historical theology, hermeneutics—everything was designed to help me exegete the text, but no one equipped me to exegete the culture.

2. Church structures are unsafe for prophets
A prophet by definition is going to disturb the status quo, make people uncomfortable, and rock the boat. But when a pastor with a prophetic function is completely dependant upon the congregation for his/her livelihood it creates a conflict of interests. Hirsch and Frost state the problem well:
Centralized funding makes the minister or leader economically subservient to the dominant interests of the group. It’s very hard to have a prophetic ministry to the group that provides your salary. And this incapacity to cultivate an authentic prophetic ministry contributes directly to the institutionalization of ministry and the church. Leadership is thus always hostage to the reactionary groups in the congregation. Change becomes inordinately hard.
One way to overcome this problem is to decentralize funding for church leaders. ...Certainly, these ideas raise other challenges but they might allow a prophetic voice to once again be heard within the local church.

3. Ministries evaluate size not depth
...If we only see success in ministry as numerical growth we’ll never tolerate the ministry of prophets. Their role is not to add people to the church; that function belongs to the evangelist. Prophets bring depth and discernment to the community, they correct our course when we get off track, and they warn us when pragmatism begins to overshadow faithfulness.
Ultimately, if we have any hope of restoring a prophetic ministry to the local church we need to abandon our either-or thinking. We mustn’t require pastors to be either leaders or prophets. We cannot value either expansion or depth. And we must not see the role of pastors as being either to comfort the flock or correct it. Both are necessary for meaningful and balanced ministry."

Via Out of Ur



"

Family Village: Disability Resources

Check out this "global community of disability resources". You'll find a variety of resources here !

Safety on college campuses : Let's not form a lynch mob yet

It was supposed to be a social occasion, just having a meal together.

But my able bodied acquaintance decided that the main topic of conversation should be the shooting at Virginia Tech and whether there should be more laws about how to deal with students with mental illnesses. Laws that exclude such students, laws that take away the privacy rights of such students, laws that cut away at the hard fought for provisions of the Americans with Disabilities Act, and laws that increase the stigma such students already have faced.

After listening to my companion's argument, I took another sip of coffee. I swallowed. I thought about how I just wanted to eat my breakfast. But as a person with a disability I know that many others are thinking and saying these same things.

So I brought up the danger of knee jerk reactions to fixing problems, the tendency to point the finger at the entire group of students with mental illnesses for the behavior of one and the folks who chained themselves to court houses and other places to get those of us with disabilities the rights we have that still are not being enforced.

"As a group, we have legal rights but not social or cultural ones in many cases," I said quietly.

I was cut off. She was too angry to listen to me. "I knew you would say something like that, something vague," she said triumphantly, sitting back.

"And," I continued, "this is why many of us are forced to resort to the court system to handle situations which adds to a backlash against our rights. Then the stereotype of the angry and bitter and unreasonable disabled litigant crops up. Suddenly everyone else becomes the 'victim'. Even though we are the ones who cannot get access to buildings, churches, schools and other institutions, the finger is pointed at us when we try to enforce our rights."

"I'm not talking about your rights," she said. "I'm talking about everybody else's rights."

Ahh, the us versus them argument. I refused to take the bait. I did have more coffee. "So you think we need to cut away the rights of students with mental illnesses because of the behavior of one student," I repeated. She nodded. "So let's follow through with this. If one college football player rapes another student, should we test all college football players to see if they are sexual predators?"

"No, of course not. That would be a violation of their rights. We'd be punishing them for who they are, not what they've done."

"Maybe test all college athletes or students who weigh over a certain amount? Maybe we should do it on the basis of other attributes?"

She shook her head vehemently. "Absolutely not."

"Then I don't follow your reasoning. What you're saying is that only students diagnosed with mental illnesses shoot other students, right?"

"No, I didn't say that."

"And you're not saying other students should have their rights taken away?"

"Definitely not."

"Then how is that different than the college football player argument?" I asked.

"We all know that college football players aren't crazy."

"But some football players have commmitted crimes," I point out. "There have been several trials for rape by Naval academy cadets this year and three of those students were football players. But I heard no outcry about treating college football players differently."

"Well it's not right to pick on student athletes as a group. Look at how they picked on those Duke lacrosse players," she said hotly. "They were innocent and people made assumptions."

"And those assumptions hurt those players," I said quietly. "Our country was all indignant at the assumptions that were made against the Duke students just a few days before this shooting. We were all talking about the need not to rush to judgment, weren't we?"

Neither of us said anything for a few minutes. "There is that side of things too," she agreed.

I'm reminded of the mob scene in Frankenstein, where the villagers run out of their houses to get the monster. Torches alit, they go through the streets, looking for him, determined to make themselves "safe". Except in this instance the "monster" has been defined as students with mental illnesses.

Before we form a lynch mob, folks, let's calm down and consider how the prejudices that society still holds against those with mental illnesses are affecting our judgment. And let's take a look at the role stigma plays in how we treat this issue before we judge people on who we think they are rather than by what they have done.

We have to do something about The Boxes

My aide spent hours this afternoon getting rid of boxes. There were big boxes, small boxes, medium sized boxes - all over the place.

Why? Because by the time my aide does everything I need done plus those extra things that happen in life, there is no time left to deal with organizing things . So boxes happen. Clutter starts and grows. And suddenly I'm surrounded by boxes. The boxes become a metaphor for the fact that there's just too much to do.

I get used to them. I roll around the boxes that begin to jut out from the sides of my bed. Then boxes appear in hallways and those extra spaces in corners so that there's just enough room for my wheelchair to get through. Almost like developing body memory, I bump into "new boxes" when they are first placed somewhere but in a few days I learn to go around them. I don't think of them as boxes. I think of them as walls or room divisions. After all I'm a quadriplegic and can't move them at all so once they're placed, they stay put.

Lately it's become clear that something was going to have to be done about the Boxes. I tried to hire a few people to deal with the boxes. Some came once or twice but no one was able to handle the situation. A few ran out when they saw how many boxes had accumulated. Cowards, my aide said to me. Wimps, I agreed. It became apparent that this was yet another thing my aide was going to have to do. We talked about it. "Make a list" my aide said so I wrote down "Do something about The Boxes."

Then yesterday UPS arrived - with three more boxes. There was simply nowhere to put them. It was like a cruel joke. And I emailed her "The next time you come over we HAVE to do something about The Boxes." She wrote back "OK. Will do."

So today my aide arrived wearing combat gear. She has special clothes she wears when she's going to do a Big Job. Boxes were everywhere. She looked around woefully. I felt sorry for her. I watched as she ran her hand through her hair. She took a step back, then held her hands up and said "OK, OK, let me do this. Let me concentrate."

I tried to make a few suggestions but she gave me a look similar to that of Simon Cowell after Sanjaya sings. I sighed and backed off. My aide took things out of small, intermediate and big boxes. Objects flew, papers were stacked and boxes were crushed. Dust rose and fell as she whipped out the hand vac. The cat sat on papers, stepped over things and tried to sit in now empty boxes. I rolled over extension cords, papers and piles of stuff. My aide periodically stopped, looked around frantically at me and the cat and then kept going. For hours. I began to fear for her sanity. I closed my eyes, unable to watch any longer.

And then I heard her say "I'm done."

I opened my eyes. There were no more boxes. Tentatively I rolled around, testing out corners that had reappeared, making turns I hadn't been able to navigate in months and oohing and aahing at the extra space. My aide got herself a diet Coke and stood watching me.

"Thank you," I said.

We hugged. The cat , I think, danced. Maybe not. But the joy was palpable. We were "caught up" despite the system, despite the odds against it - all the things on the "regular list" that need to be done and all the mini emergencies that happen that we dodge and duck.

There is hope in the space that has opened up. For a time, my aide and I can relish the freedom of knowing that we got to The Boxes.

Fr. Jonathan writes about the Virginia Tech tragedy

"For now, we can only speculate about what may have been the cause of a life gone wrong. Cho Seung-Hui’s writings reveal a heart full of hate, anger and violence. The characters in his plays were victims of abuse. They hated authority and they wanted revenge. So did Cho...
I’ve worked in a university campus ministry. I know there are a countless number of young men and women whose hearts and minds — at least bits and pieces of them — are rotting from within, just like Cho’s. They look desperately and silently for love, to love and to be loved. Carrying emotional baggage from home and with no compelling guides in their newfound world of absolute freedom, they end up looking for happiness in all the wrong places.
But as we’ve seen, some don’t. ...
Of course, this bleak scenario of meaninglessness isn’t just a college thing; it’s a human thing. What’s gone wrong and what’s the answer?
This I know for sure: better security, more laws and revamped structures are not going to get to the heart of the problem.
The only way to deal with the heart is on a one-to-one basis. The work begins in the home and it continues in every human contact that follows — at work, school and the local gym."

via FoxNews

Click above to read the rest.

Abilities Expo NY Metro

And while I'm announcing upcoming events, let's not forget the Abilities Expo that showcases so many vendors, adapted sports demos, theater and art groups for people with disabilities and worthwhile workshops (say that one quickly!) :

April 27-29, 2007 Friday: April 27, 10:00 am - 5:00 pm
New Jersey Convention and Expo Center Saturday: April 28, 10:00 am - 5:00 pm
Edison, NJ Sunday: April 29, 11:00 am - 5:00 pm

Click above for directions/more info

Upcoming dates/locations

> Southern California, June 15 - 17, 2007
> Minnesota, September 7 - 9, 2007

Sprout Film Festival 2007 in NYC

Showcasing film related to the field of developmental disabilities

Taking place on Friday April 27th and Saturday April 28th at New York
University's Cantor Film Center, 36 East 8th Street, and on Sunday
April 29th at the International Hostel at 103rd St. and Amsterdam
Avenue. Festival highlights include "My Brother" starring Vanessa
Williams, "Life In the Shadows" a documentary about President
Kennedy's efforts to help the disabled, "Brain Man" a documentary
about autistic savant Daniel Tammet and "Kids Like These" a 1986 movie
starring Tyne Daly. Please visit their website for more information.

Via SDS list serve

U of Delaware student - New Orleans teachers have no resources for special needs students

[visual description: A young African American girl peeks out of the glass doors of a yellow school bus while perched on the steps of the bus.}

Students recently went down to the post-Katrina area in the Recovery District to offer hands on help to educators during their Winter session service learning sojourn.

"The UD groups were associated with the John McDonogh Senior High School in the Recovery School District.

The high school needed volunteer help in a variety of areas, Alvarez said. There were no records or transcripts. Students were self-placed in the classroom. Another issue involved student ablilties in reading and writing, with some students unable to read or write a complete sentence. “The teachers were on their own,” she said. “There were no resources for special needs or special education students.”

I found this information on the U of Delaware website in an article about the students' service learning experiences.

However, the impact of Katrina on education needs to be brought into focus so that even more citizens (and educators )around the country can assist recovery efforts. Children who fall through the gaps leaving them unable to read and write will feel the impact of Katrina in ways that can be avoided by action now.

Texas needs to follow the ADA

A pending state bill would waive the immunity the state of Texas has claimed from provisions of the American with Disabilities Act.

State Attorney General Greg Abbott has gone to court to declare that Texas has sovereign immunity from the Americans with Disabilities Act, a landmark federal law guaranteeing full civil rights to people with disabilities. Although his claim was rejected, it was done in a narrow ruling. The pending legislation would protect the enforcement of the ADA in the future.

Abbott's attack on the ADA was limited to claims against the state of Texas itself , not the entire ADA.

A new short story: The Fly and the Old Man

[visual description: Illustration of a fly swatter, its shadow and a fly.}

A story dealing with acceptance - sometimes not an easy thing.

Via A Different Light

Winners of Boston Marathon...

..in various divisions are posted with some pictures over at DisStudies Temple U by Penny Richards! These include visually impaired, mobility impaired ( those competing on crutches, braces or prosthetics) and wheelchair divisions. Click above to check it out.

May 1 2007- Blogging Against Disablism Day

Diary of a Goldfish is running Blogging Against Disablism Day on May 1. Last year the Goldfish "hosted the first Blogging Against Disablism Day where almost a hundred and fifty people joined together to write about disability and rail against the discrimination that disabled people continue to face. Both disabled and non-disabled people wrote about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with other forms of prejudice."

Click on the logo to go over and sign up!

"Violence Comes to Class"

In the face of the shootings at Virginia Tech, I found this post by Sr. Edith, a college professor, who writes over at Monastic Musings:

"After the shootings at Virginia Tech, I am probably not the only faculty member thinking, "Could that happen here? Could someone show up in my class with a gun in statistics class this afternoon, ending my life and those of my students?" The sad truth is that it could happen in just about any classroom on any college campus in America."

She raises a great question:

"Rather than ask what pushes one person so far over the edge that a massacre seems the best, or only, way to deal with the extreme emotions, I wonder what situations push so many people close to the edge - and how we might change that."

Click above to read the rest.

Holocaust survivor denied wheelchair

A Holocaust survivor with the use of one arm and one leg who moved to Israel at the age of 17 has been denied a power wheelchair by the Health Ministry in Israel.

"Despite the difficulties faced by Michal - who hid from the Nazis when they stormed his native Czechoslovakia and moved to Israel in 1949, at the age of 17 - the ministry has rejected his request for an electric wheelchair. Such wheelchairs, it contends, are provided only to people under the age of 65, and only if they are active outside the home.

"It's not logical," said Michal, who has taken a loan to finance an electric wheelchair but is having a hard time meeting the payments. "The older a person is, the harder it is for him to get around outside. What, from the age of 64 I have to be a prisoner in the home?"

Via Haaretz.com

Reminds me of the Medicare In Home Restriction on wheelchairs our country presently has which keeps people prisoners in their home and the Medicare Independent Living Act which has been drafted to address such issues.

Whose Planet Is It Anyway?: Just mailed my taxes...

Over at Whose Planet is it Anyway, a post about being "fed up with all the people I'm supporting with my tax money" from a person with autism's point of view:

"And how about the eugenics researchers who are happily munching on all those tasty grants from the National Institutes of Health that fund their autism genetic studies to develop a prenatal screening test? That's my tax money being spent for their genocidal schemes, too."

Click above to read the rest.

"Fitness a struggle for disabled people"

""There's an enormous number of barriers that people with disabilities face when they try to become healthy," says Dr. James Rimmer, director of the National Center on Physical Activity & Disability, and a professor at the University of Illinois at Chicago.

Those barriers range from health clubs that view people with disabilities as potential liabilities to public health campaigns that bypass them entirely.

"There's a mind-set that people with disabilities are also ill and they shouldn't be exercising," says Jerry McCole, who heads the National Disability Sports Alliance. The group promotes athletic competition and physical activity among people with cerebral palsy, traumatic brain injury, stroke and other physically disabling conditions.

"It's like any minority group — out of sight, out of mind," McCole says."

The article goes on to say that the erroneous assumption that people with disabilities cannot do physical tasks adds to the problem, including the lack of availability of fitness alternatives. This contributes to the poor health of many with disabilties who develop secondary health conditions .

Via Yahoo News

Helping students feel safe after tragedy

In this 2001 post 9/11 article, experts talk about how parents and educators can deal with the fears of students on issues such as feeling unsafe, talking about tragedy and violence and limiting exposure to TV coverage. Studies have shown that even those who are not present at a tragedy can experience a form of PTSD, especially children who have difficulty processing repeated images of TV coverage of events.

"Gateway to Post Traumatic Stress Disorder"

Today's tragic shootings at Virginia Tech will affect many lives. It is imperative that the students and staff who personally experienced this tragedy give voice to their experiences in its aftermath.

Click above to learn more about PTSD and to find resources for help and support.

Before there were hobbits....

A new Tolkien work, The Children of Hurin, is being released on April 17. Tokien's son, Christopher, has co-authored this work which is about the time before the Lord of the Rings, before there were hobbits.

I can't imagine that. No hobbits?


{Visual description: An illustration of a Tolkien character known as a hobbit- who is short of stature and leaning on a staff.}

Holy Spirit Interactive

To visit this online Catholic newsletter, click above. It features writers like Mark Shea and a whole host of different topics. You can also have it sent right to your email box!

Weight loss school for teens

Over at Interactive Narratives I found a multimedia presentation on an academy specializing in treating overweight teens. It includes profiles of several students as well as showing what life at the academy is like.

Wheelchair user transferring from wheelchair to couch

In this video, a wheelchair user demonstrates how she gets out of her wheelchair (which is called transferring) onto a couch.

Please note the helpful cat in the background who paces along the couch waiting for his owner to be ready to pet him!

"Peter was a man with all the weaknesses of a human being, but above all, he was a man full of passionate faith in Christ, full of love for Him. Through his faith and his love, Christ's healing power, his unifying force, has reached all men even through all the weaknesses of Peter. So let us look for Peter's shadow even today, in order that we may be in the light of Christ. "
-Pope Benedict XVI

Disability ratings system ill serving soldiers says Commission

According to commission findings, gaps in the system include a disability rating systems that may shortchange soldiers. Cases of PTSD and brain injury often lack proper documentation and the many claims are being set at 30% despite higher functional levels of disability and pain reported by personnel. Worse yet, officials claim it will take "several years" to fix the problem as soldiers continue to be injured in war.

Covering: The Hidden Assault on Our Civil Rights by Kenji Yoshino

I've been reading this book by a Yale law professor who discusses a new theory of civil rights. It's beautifully written and often reads more like a memoir than a treatise. I'm only halfway through the book, but find its discussion of "covering" interesting in the context of disability. The author posits that FDR was using "covering" behaviors (as opposed to "passing") when he sat behind desks at meetings to hide his disability. "Covering" is defined as "toning down a disfavored identity to fit into the mainstream".

The author reaches past conventional civil rights theories by positing that all human beings seek the right to be authentic and argues for a "new civil rights paradigm that moves away from group-based equality rights toward universal liberty rights, and away from legal solutions toward social solutions."

Helping others - it's a good day

{visual description: Photo of store employee wearing a helping hands sign in the parking lot.}

One of my friends , Joe (not his real name or picture), works as a Helping Hand at a grocery store. Joe has cognitive limitations and CP which makes it difficult to walk. Joe limps and sways as he helps customers but is strong enough to do the job.

"I like to work," he told me one day. "This is a dream job. I get to help lots of nice people, like you."

He's a charmer.

When Joe needed my help with a problem because he has trouble dealing with paperwork he wanted to pay me but I told him he's already paid me many times over with his kindnesses. As hard as he works for his money out in the cold, snow and heat, I was impressed by how he offered to pay although I certainly wasn't helping him for that.

I don't see Joe too often since I have my groceries delivered, but sometimes when I'm down in the area I stop by to say hello and just check on him. He's usually smiling. When I ask him how things are going he says "I got to help lots of people today. It's a good day."

I wonder how many lives Joe touches every day.

Sober companions

This NY Times article discusses the use of "sober companions" by addicts and alcoholics to help keep them from using. Noting that this area is unregulated, it discusses the role of a sober companion.

"Sober companions who, like Mr. Kaplan, charge daily rates comparable to the most expensive rehab facilities, have mostly been known as members of a celebrity’s entourage, akin to a personal trainer or a life coach. The profession gained some notoriety when companions accompanied actors like Robert Downey Jr. and Matthew Perry as they struggled with substance abuse problems while shooting a movie or television show.

But, in recent years, sober companions say demand for their services has come from outside Hollywood as well: from the chief executive officer who needs to avoid taking a drink while entertaining clients to the lawyer who needs to stay away from the airport bar while on a business trip."

Via NY Times

Unregulated or not, this is expensive , costing almost as much as a stay in a rehab or treatment center on a daily basis.

For everyone else, the service of the well known sponsor of 12 step tradition is - well - freely given.

Day of Fast and Prayer for Zimbabwe

Over at From the Anchor Hold, Karen Marie has published a Pastoral Letter by the Zimbabwe Catholic Bishops' Conference on the current crisis in their country entitled God Hears the Cry of the Oppressed.

They are asking for prayers and fasting today. Please click on the link above to read the letter and learn more about what is happening.

Wheelchair basketball photographs

I've linked to a website by Josh Birnbaum, a student at the University of Illinois, who has photographed the University's wheelchair basketball team. He has great photo essays showing the team traveling, practicing and playing. Be sure to look around his site since there are several series of photos.

Josh has his resume and contact information up if anyone needs an excellent photographer!

"Medicare Keeps Door Shut On Disabled"

This article discusses the draconian policies of Medicare as it affects wheelchair users, not only referring to the "in home" policy but further recent restrictions.

"Last fall, Medicare made the guidelines even more rigid, categorizing people by types of diagnoses in order to decide what kind of wheelchair to cover.

"You really can't just group people with the same diagnosis," says Lois Tucker, an occupational therapist who works at a Rehabilitative Technology Supplier (RTS) in New York. "Two people with rheumatoid arthritis can be very different cases. One person could be basically paraplegic, but Medicare still would only cover a group two [lower functioning] wheelchair for them."

Worse yet, Medicare will not cover the highest functioning wheelchairs (groups four, five, and six) at all now."



Via AlterNet

Click above to read the rest of the article.

Rutgers Team Accepts Imus' Apology

As Coach Stringer says let us hope this is a catalyst for change. Please keep everyone in your prayers as they journey on their road to healing and forgiveness.

On the way to the meeting, Governor Corzine was seriously injured in a car accident. He faces three to six months of being unable to walk, is presently on a respirator, has had one surgery and requires at least two more. Please remember him in your prayers as he recuperates.

Child soldiers - with disabilities - used to fight in Iraq

According to this article in Spero, children with "mental handicaps" are being kidnapped or sold to fight US and Iraqi soldiers. Here is one child's story:

"The dreams 13-year-old Barak Muhammad (not his real name) had of leading a normal teenage life were dashed when his father sold him to al-Qaeda militants. Being mentally handicapped, he said he was considered a burden by his family and was told he would be better off sacrificing his life for his country.

“I don’t have a mother and never went to school. I was dreaming of a day that I would go to school like my other brothers, but I was considered different. My father was always telling me that I was a mistake in his life, a boy that was just bringing expenses and problems,” Barak said.

Barak's father sold him to al-Qaeda in Iraq for US $10,000 to support his remaining five children. Now, Barak is in training to fight US and Iraqi troops. "

Via Spero

Statistics show that most children with disabilities in third world countries do not receive an education. The article also links to a source indicating that many children in Iraq, due to the war, are being deprived of an education because of the dangerous conditions.

Click above to read more.

A hidden barrier to access- the cost of an aide

I'd like to talk about a reality for people with disabilities who need aides to go places with them. Like me.

Some of us get some aide hours for free or sliding cost but usually not enough hours to meet anything but our most basic needs - if that. And then we have to hire people out of pocket. An agency around here gets about $26 /hour for an aide. And when I try to hire privately, it's not much less due to the shortage of aides. Which makes me really aware of how many hours I can go out for and be somewhere because I'm hiring someone else the whole time I'm out. The shortage of aides also makes it almost impossible to have backup which means that if an aide fails to show to go some place with me, I have no backup and cannot go.

For me, it's become a barrier to participating in society.

Because of this, I've had to give up volunteer work and social invitations, missed important events and some possible business opportunities. Forget going to all day or weekend conferences. I can't afford the additional cost of bringing an aide with me. And going alone just won't work for many reasons. I can go some places alone because I know when I get there people will help me but quite frankly my hands don't work. And going to cities by myself is a safety issue due to the level of my quadriplegia. Taking notes is an issue. Getting myself beverages is an issue. Cutting up food is an issue. And there are other issues I don't even care to discuss which make it inappropriate to rely on just anyone who happens to be around - but you get the gist.

The truth is that when I go over my allotted aide hours, I need to be making money in order to pay the aide I have to bring along. I hate that fact more than anyone else because it stops me not only from doing volunteer work, but really cuts into my social life big time.

In terms of education let me say that many people who use wheelchairs are able to manage without having an aide along. But for those of us whose disabilities require an aide and cannot afford it, it's a barrier to access that we haven't even begun to address.

"Those are my brothers" said Kurt Vonnegut

Kurt Vonnegut has died. I remember reading his books and being confronted by his often cynical view of the world. When I found out a few facts about his life, I understood better. His mom commmitted suicide. He joined the Army and was taken as a prisoner of war and hid in the basement of a slaughterhouse to survive.

And he wrote. And wrote. He did have a low opinion of humanity, some say. Yet at one speech, he referred to abused Iraqi prisoners of war by saying "Those are my brothers." And the place went silent. He knew about injustice.

As a society, we are confronting our own use of language related to racist beliefs that stem from a long history of oppression and injustice. There is, at least, the start of an acknowledgment that our public airwaves should not be used to broadcast racist remarks. But what about the use of this kind of language when we are out in public? What about talk around the dinner table or among friends? What is acceptable discourse?

We can debate who calls who what name and whether it's right for any person, no matter whether they are included in a certain group, to use derogatory language. And the news shows are full of pundits doing exactly that, holding up rap music as an excuse or permission for others using racist language. That argument falls flat for me. It's just as wrong to hide behind language when discussing these issues to avoid addressing and fixing the injustices as it is to hurl the epitaphs in the first place. Because it's about having a human connection to each other as brothers and sisters.

In my freshman year at Rutgers many moons ago, I was assigned an African American roommate. She became a great friend. But our interracial dorm room did not go over big with some. We found dead rats and mice left in front of our dorm room door with notes warning us to "stay with our own kind". Both my roommate and I were stopped by groups of both white and black students and threatened on our way to classes a few times. We had food dumped off our trays when we went to the cafeteria.

One day my roomie came into our dorm room and asked me if I wanted to get a white roommate. I began to cry, shook my head no and just hugged her in response. We never discussed that again. Eventually folks backed off from harassing us.

I learned a little about racism that year. Just a little. It was an entirely different experience for me because I am white. But I learned that racism is a very ugly and very real thing in our country.

When we do or say anything that denies the humanity of those who are different from us, we deny those who are our own brothers and sisters. It's easy to recognize injustice when it's done to us and much harder to recognize the magnitude of it when we haven't experienced it. We need to learn as a nation and a world to listen to those who really know of what they speak.

They are our brothers and sisters.

{To read some of Kurt Vonnegut's online articles from In These Times, please click on the link above.}

Disability blog carnival 12 is up....

and thank you Tokah for all your hard work on this one! The theme is disability and culture. There are many great entries - go on over and check it out!

My personal favorite was Disability Soapbox written by Jules who is deaf but was in a wheelchair recuperating from injuries. He writes:

"What I WANT to talk about is what I have experienced as a dual disabled person, being deaf AND temporarily disabled in other words, I wasn't able to walk for a long long time... I found that I had to rely on people to help me go to bathroom, just for a piss or for a sponge bath, to help me get dressed and/or to help me get things I needed (such as food, books, DVDs, stuff to keep me busy.) Now if you think that sounds "relaxing and wonderfully lazy," I am telling you now, it WASN'T. ... I went back to college earlier than what folks expected. Yes, it meant that I had to go around in a wheelchair on the campus. I didn't mind that. Little I knew what was waiting for me!

Going around in a wheelchair was more challenging physically, mentally AND emotionally. I discovered personally that folks in wheelchairs are MORE invisible than I imagined. It's like the folks out there are saying to themselves, "don't see that woman in the wheelchair, let me get out of that way, I don't want her to brush by me." "If I don't meet her eyes, she'd not ask me for help." "Oh, how awful for her! She is miserable, I know!" I could go on but you get the idea.... There were a lot of folks that'd not even look at me even when I wheeled by; there were a lot of folks who'd LOOK at me as if I was a freak. Sometimes there were folks who thought to help me WITHOUT asking me if I needed help. I got furious with a man who tried to push me (in my wheelchair); it startled me so bad because I was pushing myself, and suddenly the wheelchair picked up speed than I was used to so I immediately knew someone was behind me, pushing me. I slammed down the brakes and he almost flipped over my chair/body. I had to twist my upper body to tell him "thanks, but no thanks!" Mind you, I wouldn't MIND getting help but I feel that one SHOULD ask "do you need help?"

His post had me laughing out loud at his descriptions of situations. I would point out that when one gets used to being in a wheelchair, depending on the disability, it gets easier and you can do more for yourself (again it depends on the disability). But I love his allusion to "relaxing" and "wonderfully lazy" since in my experience there is nothing relaxing about having to rely on someone else to do things for me - I find it very stressful actually most of the time and would much prefer to do things myself. (Another myth gone down the toilet!)

There's also a great post by brokenclay on hotel access (or NOT) and by lisa entitled "Sometimes I wonder how walkies survive" - well you'll see....

Learning about disability in the UK

New disability legislation in the UK is posing challenges:

"The scarcity of disabled staff working in post-school education has implications for teacher trainers, for the recruitment and career development strategies of HE institutions, colleges, local authorities, voluntary organisations and private-sector trainers alike. Improving things for disabled staff poses real challenges for providers, who experience here as elsewhere tensions between competing obligations.
The disability legislation makes these issues relevant for all institutions, but there is more to equality than compliance with legislation. Cultures that foster the development potential of all staff, and seek to reflect the full diversity of the communities they serve, make for excellent places to learn.
The National Institute of Adult Continuing Education, Niace, has launched a commission on disabled staff in lifelong learning. It plans to improve the data, identify best practice, and offer advice to government, providers and practitioners to help the sector in complying with the duty, and in strengthening cultures and practices. It will gather evidence and prepare an interim report for September, with a final report in the new year."

Via The Guardian

"Dying...or getting better..or growing up?"

tvs over at Title Varies Slightly writes a post about living with a disability as a child and the messages she received from children's books, school and those around her. Some of the boys, who had muscular dystrophy, died and from the books she read, she says:

" I thought that when I grew up, I’d be able to walk and use my hands easily and speak clearly, just like “regular” kids. You see, I had read Heidi, and at the end of the book her cousin Clara gets out of the wheelchair, and she can walk! And I had read The Secret Garden, and at the end of the book her cousin Colin gets out of the wheelchair, and he can walk!"

She describes her journey from seeing her choices as either dying or getting better - to growing up sitting down . Click above to read the post.

"Life in Medicare's Waiting Period"

In this USA Today article, the impact of the two year wait for Medicare benefits for people with disabilities is discussed. It reads in part:

"Each year, tens of thousands of Americans like McCutchan find themselves disabled and unable to work. After going through the process to get Social Security disability income, most are shocked to discover that they have to wait two more years to be eligible for Medicare, the federal health program for elderly and disabled people.
...There are no precise estimates of how many people, insured or uninsured, are in the waiting period, but the number probably ranged from 1.4 million to 1.5 million in 2003, says a report by researcher Gerald Riley published in the journal Inquiry in fall 2006. Of those, a National Institute on Aging Health and Retirement Study in 2001 estimated that 27% to 39% had been uninsured at some point during their waiting period.
Often, that's because they are too ill to qualify for private insurance, their Social Security income puts them over the limit for Medicaid coverage and they can't afford to continue insurance through their former employers."

Click above to read the rest.

Sibling Mine - And parent of a child with a disability

This piece was written by my sister for National Siblings Day:


"I feel that I am at a great advantage as a mother because I have 3 siblings, two brothers and a sister. I am the youngest, and many of the experiences I had growing up with my brothers (particularly them because I have 2 boys, ages 16 and 10) I see happening now with my children.

My 10 year old son has a disability and he still competes (and wants to win!) against his brother, who is 6 years older than him. This jealousy, I feel, is the most difficult issue in parenting since neither of my sons are satisfied with the amount of attention they get from me. Since my grown brothers still feel a great sense of competition, which I have seen my mother struggle with them about to this day, I try to handle these issues with humor and loving discipline.

On the other hand, my sister and I have been through many stages of development with our relationship, and have reached
a point where we can depend, confide, console, and trust one another. She is 8 years older than I am, and we have still reached this point, which I feel is a great accomplishment, and a huge comfort to me. There is nothing like the security of knowing you have a sibling who is there for you!

HAPPY SIBLINGS DAY 2007!"

Judge sets hearing, orders baby Emilio be kept on life support

"Probate Judge Guy Herman set a hearing for April 19 for both sides to present evidence in the case of 17-month-old Emilio Gonzales.

Children's Hospital of Austin has been caring for Emilio since December and says the effort is futile and the child is suffering without medical benefit. It invoked a state law that allows hospitals to end life-sustaining treatment in such cases with 10 days notice to the family."

Via Houston Chronicle

Rutgers Women's Basketball Team- We hold our heads high with dignity...and with respect for ourselves

{visual description: Captain Essence Carson of the Rutgers Women's basketball team addresses the audience at the press conference held today.}

Snippets:

Rutgers President : Thank you for being the outstanding ambassadors you are. My heart goes out to each and every one of you.

Coach C. Vivian Stringer:
Let me bring a human face to all of this...I want you to see ten young women who accomplished so much...that we...are so very proud of. These young ladies are valedictorians of their class....future doctors, musical prodigies...girl scouts..the best this nation has to offer and we are so very fortunate to have them here at Rutgers University....young ladies of class, distinction...God's representatives in every sense of the word.
...there are five freshmen...with over a 3.0 GPA...bright ..gifted hardworking. talking about Don Imus story....forgetting what it's ..about....perseverance, hard work...no one believed in them but them. That's the greatest story...I have nothing but pride and respect for them....came back to this..so hurt by the remarks that were uttered by Mr. Imus...we can't let other people steal our joy. ..I was a victim of racial discrimination but I had ...people..who stood up for me..
I would ask...who could hear these comments and not be personally offended? Are women hos? Would you want your daughter to be called that? ...It's about us as a people, black, white, purple or green...the color is green...these aren't political figures...hardworking young women that little girls look up to..bigger issue here...it is all women...have we lost a sense of our own moral fiber?
..i honor and respect their parents who entrust their daughters to me at such a delicate age...so I would ask all of us as adults what is this all about? Are we not responsible...for nurturing their dreams and supporting them? ...What happens when young people do good things and do the right things?..Is there malice in my heart? No, I'm hurt.....despicable words are not right...it's time for everybody to reflect on what's going on..it's been time.
..It took me 25 years to come to a championship game and for once....this was a team that had so little and gave so much...so young.....this was a team that would restore all our faith and confidence in young people. ..we hold our heads with with dignity and ...with respect for ourselves.

Heather Zurich, player:
...we fought, we persevered and most of all we believed in ourselves...but all of our accomplishments were lost, our moment was taken away. We were stripped of this moment by degrading comments made by Mr. Imus..what hurts most is that ...Mr. Imus doesn't know any of us personally...i beleve we present ourselves well... he knows not one of us.

{Each player gets up and introduces herself]

Essence Carson, Captain of team
I would like to express our team's great anger, hurt and disgust...deeply saddened by racial characterization. Imus..brought us to harsh reality ...under brightest lights... has made history...where were these major networks when we ...were making history? ..now we are being bombarded with emails, phone calls..taken a toll on us physically and mentally...we ask that you not recognize us in a light as dim as this....agreed to meeting with Don Imus....private meeting....express our great hurt and sadness this has brought to us...it's about women across the world, across this nation...take a stand..don't look at it as if we're ...attacking {Imus}....we're attacking an issue that we know isn't right.

It isn't right.

As a Rutgers alumna I am proud of these young women and I too am saddened by the fact that the media coverage was not there until the controversy with Imus occurred.

Today is National Siblings Day

{visual description: Illustration of family. The parents are standing in the back. The mother is holding an infant next to the father. In front of the father stands a young girl and in front of her is her brother who is in a wheelchair.}


My younger nephew , a fifth grader, has a great sense of humor that helps him deal with his cerebral palsy. He has his parents, friends and loving grandparents, aunts and uncles.

But he also has his older brother who is 16. When he received his first computer as a gift on Easter so that he can do his homework on it, his brother set it up for him so that he can play games easily and access the features. This kind of support and help happens all of the time.

Sometimes, because of their age difference, it's a pat on the shoulder from big brother and at other times it's a stern reminder to do homework or go to PT and do his exercises. But mostly they are just brothers who talk about games they've played, places they've gone or would like to and other "stuff".

Today is National Siblings Day . I've included a link to a site called the Sibling Support Project, a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

It's a good time to honor all the siblings today - including those who have brothers and sisters with disabilties who are still growing up and those who are now adults. If you know a brother or sister of a kid with a disability, give them a hug.

The value of pluralism in disability advocacy

Disability advocacy happens in many ways. Parents of children with a disability become advocates although some admittedly are reluctant to play that role. Others are professional advocates who are paid for their work. Some people with disabilities self-advocate in order to gain or maintain access. Some write about disability advocacy and educate others.

My view from the trenches often differs from others' point of view. That's not surprising because what I see is different than what many see. I bring with me certain information, experiences and knowledge that others may or may not have. Because of that I will sometimes advocate in different ways, depending on the situation.

I often engage the help of a group or organization in my advocacy efforts. Resources matter in the world of disability advocacy and should be respected and cultivated.

Sometimes I disagree with certain points of view held by such groups. That does not mean they are not valuable as a resource, nor does it mean that the members themselves, whether able bodied or disabled, are not people whom I respect. Quite the contrary. Even though we both are acting in the role of advocate, we may "agree to disagree" on certain issues because we may not be "like-minded" on certain points. Two people or groups can disagree on certain issues and neither is going to change position. What is good to recognize is that it doesn't always mean someone is wrong.

I can tolerate this level of pluralism better than some, perhaps because I am used to dealing with conflict resolution on a daily basis. I can see the value of incorporating different points of view into my own worldview and do that quite frequently. I can also see and avoid when possible the temptation to conform to a lower expectation in a result that is achieved if issues get too "watered down" by some group processes. ( This is different than "preaching to the choir" because when people already "get it", that approach is a waste of time and energy. ) But a group that cannot tolerate a pluralistic view and tries to impose conformity on the people who come in touch with it stymies its own growth and usefulness. In the end, this group behavior turns off people who could otherwise be valuable allies and partners.

In dealing with the myraid of issues involved in disability advocacy from the trenches, I simply cannot imagine how I could function as an effective advocate without realizing both the value of and the need for pluralism.

Orphans of AIDS- Children of Nyaka

In Uganda, East Africa, there is a day school built for orphans of parents dying of AIDS. Every 12 seconds someone dies of AIDS. Millions of children are being left behind and many grandparents are struggling to raise them . The day school provides an education, extracurricular activities and one meal a day for these children. For many it is the only meal they get.

This is a trailer for a documentary showing the staggering need for help for these children. Click above for a link to the school's website if you'd like to read more about it or help.

Inclusion : Ministering to the excluded

Easter. The parking lot is crowded, the pews fill up and the overflow of people attending Mass heads down to the new Parish center to watch Mass on an overhead screen. When it's time to hand out Communion, Msgr. Malovetz heads down there with a number of Eucharistic ministers to hand out Communion . When he returns, he goodnaturedly quips that it was a longer walk down there than he thought -with a smile on his face. It was an effort he made that was done with joy. He knew what it would mean to those people who could not get into the church and felt excluded to have him show up to give out Communion.

Sometimes "showing up" is what makes things happen. My mailbox is full at times from people with disabilities who tell me they want to go back to church (and these are not just Catholics -it's an interfaith thing). And I write back to them and we talk about their concerns. And one of the things I say is "show up". However it's not that simple for some. And there is work to be done to help those who are excluded, who aren't even able to get to the "overflow" service.

You can't show up if you can't get there. Transportation is an access issue. I have a survey up about transportation needs because that is one problem.

You can't show up if churches don't let you know about their accessibility. You don't know if you can get inside. We need to encourage parishes to put on their websites and any ads they may have if their church is accessible - ramp, accessible bathroom, large print materials and the like.

You can't keep showing up if you're greeted with exclusionary attitudes. Well you can but it leads to lack of access in other ways. We need attitudinal change as well as physical access. Are the church's activities accessible and inclusive? Are people with disabilities given a chance to participate in service work and the social life of the parish?

We need better education, outreach and awareness of what is needed to bridge gaps. The truth is that inclusion is not a static state but an ongoing ministry.

We need to be willing to walk (or roll) the extra mile, go out of our way and minister to the excluded.

"He Is Risen, Alleluia!"

Via Monastic Musings (Click above for a beautiful Easter post.)

"Called to be Witnesses, Not Philosophers"

Found this on Mirror of Justice, a blog about Catholic legal theory. Interesting post referring to Stanley Hauerwas' A Community of Character and refers to this passage:

"The task of the Christian is not to defeat relativism by argument but to witness to a God who requires confrontation. .. The command to witness is not based on the assumption that we are in possession of a universal truth which others must also 'implicitly' possess or have sinfully rejected...the command to be a witness is based on the presupposition that we only come to the truth through the process of being confronted by the truth."

I also was glad to re-read this yet again which was in another post:

"We believe that every person is precious, that people are more important than things, and that the measure of every institution is whether it threatens or enhances the life and dignity of the human person. . . In a global culture driven by excessive individualism, our tradition proclaims that the person is not only sacred but also social. The Catholic tradition teaches that human beings grow and achieve fulfillment in community."
-U.S. Bishops, Sharing Catholic Social Teaching: Challenges and Directions

Book review: White on Black by Ruben Gallego

I've been reading this book for over a month now, digesting it slowly. It's written in a style that invites quick gulps here and there, but I quickly learned that too many gulps left me unable to really process each chapter with the honor it deserved.

Honor? Yes, because this is a story of survival of the instutitionalization of a small child with cerebral palsy. Rejected by his maternal grandfather who was the secretary general of the Spanish Communist Party, Ruben is sent to a children's home in Russia, an old folk's home, hospitals and orphanages during a harrowing childhood. He alludes to the complete and total abandonment that engenders. Although in one "good" children's home he was given lessons and met some kind people, life in an institution lacks any semblance to life in the larger community. This becomes apparent toward the end of the book when he writes of being "de-institutionalized" and traveling.

Ruben describes very well how he began to see himself through the eyes of others, whether it was in a disability hierarchy of the "ambulatory" versus the "non-ambulatory" or through the eyes of staff, visitors and teachers who were mostly able bodied. His writings lead the reader into an inevitable understanding of the world he lives and survives in. One chapter talks about how one will be okay if one "has hands", observing that those who do fare much better by surviving and sometimes helping others. There is the woman in the old folk's home who devotes herself to 32 years to feeding others, for example, and the touching story of how one child helps a new boy with CP simply saying it is easier for him to do the task.

The book also deals with the very real facts of being institutionalized: being told by helpers not to ask for too much, which caused the young boy to refuse to eat and cut down on the need to eliminate; the description of the third floor "goner's" area in the old folk's home, where being sent was a death sentence; and the touching story of how staff finally allowed the children to keep a dog named Rusty through the efforts of one kind nurse and a very persistent child.

Throughout the book there is the very real undercurrent of what this child faces at the tender age of ten - a future of being placed in an old folk's home to die, left without food on a bed. He sees others leave the children's home when they age out and if they are non-ambulatory like Ruben, knows this is their fate and his. He writes how everything changed for him once he found out they would take him to that "awful place". "To become good took very little, just the tinest thing," he writes. "Something almost anyone, even the stupidest person, could do. I just had to stand up and walk."

In a chapter called "Never", Gallego writes of all of the things his disability prevents him from doing. It is a rare foray into that type of discourse for him since the book, in general, emphasizes how those with disabilities are more resourceful than the able bodied (as in a wonderful story about how the children in the home are disgusted by a boy with a broken leg on crutches who runs from a fight when he only has a broken leg). Ruben then writes about traveling to America and experiencing the freedom of having mobility for the first time in his life - having access to an electric wheelchair and accessibility which permits him to see the nightlights for the first time - be out at night and be out during the day to do simple things like get a meal. These two chapters in juxtaposition are a fascinating look at the difference between what limits a disability imposes and those that are imposed on people with disabilities through our social systems.