Phinally Phillies?

I'm holding my breath here.

It takes fortitude to be a Phillies fan. Patience. The willingness to endure watching them just about make something of their season for phourteen years, only to be struck down at the last moment, sent back to the clubhouse with nothing but the sound of empty popcorn containers bouncing around.

But here we are - bottom of the eighth inning. The Phillies are up 6-1 against Washington. The Mets are down 8-1 against Florida Marlins. And it looks like - yes I know we've been here before - the Phillies are going to actually make this happen.

Phans in the stands are nervously wringing their hands. Many are chanting, clapping, waving towels, screaming MVP when the players go to bat. The Phanatic is going wild. Well he always does that.

Is it real? Could it be?

Janet, Maria, Cory - are you watching? Are you listening? Can you hear that sound?



It's Phllies Pride, my phriends. I mean friends. Let's hope they phinish this off...

YES! THEY DID IT FOR THE FIRST TIME SINCE 1993!!!!!

[visual description: The mascot of the Phllies, the Phanatic, who is a giant green bird wearing a Phillies shirt and red cap (ok I'm doing my best here) points at the camera in a "I want you" pose.}

PET gives the gift of mobility in third world countries

PET was established in 1995 to bring mobility to people in poor and underdeveloped countries. They deliver handcranked mobility devices such as the one pictured below to the right to those who need them. The demand is great and PET works with all groups, religious and secular, to accomplish its goals.


"PET Project has worked to fill the needs primarily in the following areas:

Congo/Zambia: The frames and wheels for the PET are shipped there via container, and the wooden part (we call this the 'bed') is made and then distributed. They have 4,400 persons on a waiting list.
Angola: We ship PETs to Angola complete with the wooden bed, and they are distributed by our missionary nurses. The bishop of Angola says, "Just ship us all you can." The need is so great.
Other areas: Afghanistan, Argentina, Bangladesh, Benin, Bolivia, Bosnia, Brasil, Bulgaria, China, Columbia, Costa Rica, Cuba, Dominican Republic, Ecuador, El Salvador, Eritrea, Gabon, Georgia (Russia), Gaza, Ghana, Guatemala, Haiti, Honduras, India, Iraq, Jamaica, Jordan, Kenya, Kosovo, Liberia, Madagascar, Malawi, Mali, Mexico, Mongolia, Montagnon, Namibia, Nepal, Nicaragua, Nigeria, North Korea, Peru, Philippines, Russia, Rwanda, Senegal, Sierra Leone, Tajikstan, Tanzania, Thailand, Trinidad, Uganda, Ukraine, Uzbekistan, Vietnam, West Bank, Western Sahara, Zaire, Zambia, and Zimbabwe have all received one or more PETs."
-via their site

If you would like to donate to PET or do service work in one of these countries and know someone who needs a mobility device, click above to visit their site.

[visual description: A man who is an amputee sits on a three wheeled cart, his arm resting on the handle.]

When Sports Imitates Life

Everyone was shocked. The US Women's Soccer Team was blanked by Brazil, 4-0 in the playoffs at World Cup. During the game the coach made a controversial decision and benched Hope Solo, the goalkeeper. The player he put in had played in many international high profile games. But the shock wasn't over. After the game, player-turned-coach Solo went in front of the press and not only criticized the coach's decision, but allegedly disparaged her replacement.

A few days ago, at a team meeting, it was decided that Hope would not attend or play in the rest of the World Cup series. She posted an apology "of sorts" on her web page according to newspaper articles, but it wasn't enough to convince her team that she should return.

On the day after all this happened, my initial reaction was that Hope was way out of line. Publicly criticizing a coach - and certainly a teammate - undermines the coaching staff and player morale. I even penned a post about it. But then I read a few more articles online about the coach's decision and what the player said and decided to delete the post because I had other topics to post about and couldn't take the time to read enough that was out there.

My take on this today however is about how the media used Hope Solo. Her interview was great press. It was sensationalized. It gave people someone to blame for the loss. And, let's face it, it falls into media coverage of events that seems to more closely resemble Entertainment Tonight than sports events. Soap opera.

But anyone who plays sports knows that a player who criticizes a coach publicly isn't going to be playing for that coach much longer. And criticizing team mates just puts the icing on the cake. Hope Solo forgot this. Perhaps she bought into the hype of the moment created by the media so much that she actually believed it was her place to take the microphone after the game was lost and make it about her being replaced in the game.

But when the camera lights went off, the bottom line was that Hope Solo was just another player on the team. She's not the coach. And now she's not a player. She's only in the news because the same media that built her up now reports that she's banned from playing at the game.

When I was a camp counselor years ago, the newspaper came to interview one of our teen counselors about the camp. The reporter asked questions not only about the camp but about the counselor's social life. In an attempt to look cool, the counselor talked about some wild aspects of her social life. The subsequent article contained information that was embarrassing to the camp and the counselor. I remember the fallout. The young lady almost lost her job, received a tongue lashing from the camp director and her parents, and spent months holding her head down. She couldn't do anything about what was out there, in print. They got their story.

As hard as that experience was about personal accountability, the coverage wasn't as broad was that which Hope Solo received. Hope's lesson will be much harder. And, although it may not seem fair, her fall will also be harder.

Because , just as in life, what you say to the media as a sports figure can't be taken back.

Meanwhile, the US team went on to win their final game and take third place in the World Cup. Each player received a $10,000 bonus.



[visual description: Hope Solo, with her hands on her head, is shown seated on the right with a teammate.}
[for an article and a video showing Hope's statements to the press, click above]

One Day University

Imagine going to college for just one day. No entrance exams, no tests. And being taught by professors from the best schools across the country.

Interested? Welcome to One Day University!

This is a great chance to enrich your knowledge.

And there may be someone out there who does this to see how it goes. To build a bit of confidence. Maybe a newly injured or disabled vet. Maybe a single mother. Maybe a grandparent. Maybe a 20 something year old considering going to college.

Who knows? Maybe you.


For more information or to register, click on the link above to go to their site:

October 6, Wellesley, MA
October 20th, New York, NY
Positive Psych 1/2 Day Workshop
October 20, Rye Brook, NY
October 27, Morristown, NJ
October 28, Fairfield, CT
October 28, West Hartford, CT
November 3rd, Morristown, NJ
Human Resilience 1/2 Day Worksh
November 10, Wellesley, MA--SOLD OUT
November 17, New York, NY
November 18, Brookville, LI, NY
December 8, West Hartford, CT
December 8, Rye Brook, NY
December 9, Morristown, NJ
December 15th, New York, NY
December 16, Fairfield, CT
January 27th, 2008, Rye Brook, NY
February 2nd, 2008, New York, NY
February 17th, 2008, Brookville, LI, NY
Register online or call 800-811-8821

A Mom's Overture

To the tune of the William Tell Overture, a mother sings the things she says to her kids - every day...

We Got a Game to Play

a new poem over at A Different Light

“The God of Jesus Christ must be known, believed in and loved, and hearts must be converted if progress is to be made on social issues and reconciliation is to begin, and if - for example - AIDS is to be combated by realistically facing its deeper causes and the sick are to be given the loving care they need. Social issues and the Gospel are inseparable. When we bring people only knowledge, ability, technical competence and tools, we bring them too little"
Pope Benedict XVI (Homily)

Call my pca inspirational, not me

It was pride that changed angels into devils; it is humility that makes men as angels.
– St. Augustine

I know when I've met a person who is really, truly humble- because it's far too easy not to notice real humility.

Real humility is quiet. Humble people don't draw attention to themselves. I'm not talking about the stereotype of the meek person in the corner, but the one who rolls up his/her sleeves and does the footwork. The guy or gal who volunteers to do the tasks that go unsung. Like my pca, friend and fellow Catholic, Meredith.

The other day I emailed Meredith about a concern I had that something was above and beyond the call of duty regarding what she does as a personal care assistant for me. Meredith is , primarily, an author. And somehow manages also to be, primarily, my pca. Not easy. Almost impossible to pull off. But it gets done. And when I emailed her about the concern, we worked things out.

Being a pca involves doing a lot of unsung tasks. It's hard to do that on a day to day basis. There's never going to be any recognition of what she does. It's not fair.

People tell ME I'm inspirational. Well what about Meredith who does the many tasks that allow me to then do what I do? People tell ME it's wonderful that I have a good attitude (on most days). What about the times Meredith comes in here and my company isn't worth a dime yet she talks to me about her day so I snap out of it?

And on and on. And here's where the real humility comes in: when I occasionally tell her how much I appreciate what she's doing, she says "Oh it helps me too."

So the next time you meet a person who is doing an unsung task and who rolls up his/her sleeves and quietly works in the background, check it out. Sounds to me like they've got some humility. Try calling them inspirational and see how they react. If they give an answer like she did, they've probably got a pretty serious case of humility. You don't even need to take their temperature.

Observe. Learn. If you're very lucky, it might be catching.

Housing discrimination complaints grow

For an article with excellent resource information, click above.

Reason is the Advance Guard

a new essay over at A Different Light

Hate crimes bill passed by Senate

A hate crime bill that expands protection hate crimes based on disability, gender, sexual orientation and gender identity passed in the Senate. Senate Majority Leader Harry Reid stated:

"“The Matthew Shepard Local Law Enforcement Enhancement Act would strengthen the ability of federal, state, and local governments to investigate and prosecute hate crimes. This amendment would remove the current limitation on federal jurisdiction that allows federal involvement only in cases in which the assailant intended to prevent a victim from engaged in a ‘federally protected activity,’ such as voting. This amendment would expand the groups protected under current law to include all hate crimes – including those based on disability, gender, sexual orientation, and gender identity. And this amendment would provide the Department of Justice the authority to assist state and local jurisdictions in prosecuting violent hate crimes, or to take the lead in such prosecutions where local authorities are unwilling or unable to act. "

The bill is the first major expansion of a hate crimes law since 1968 after a decade long struggle. It would cut down on hate crimes behind attacks that are sometimes fatal upon vulnerable populations. In the case of the disabled population, for example:

"On Tuesday, May 29, at around 8:45 p.m., James McKinney, 41, of Los Angeles, was walking to a store from a board and care facility for the mentally disabled, where he lived. As he neared the corner of Wilton Place and Olympic Boulevard, a male attacker approached him from behind and struck the back of his head with an aluminum baseball bat, the video showed."
-via clickondetroit.com

"A 21-year-old maintenance worker developmentally disabled was followed into the men's bathroom at the Shirley Lanes bowling alley and sodomized.
Investigators say the Sunday night attack was the work of 19-year-old Steven Rodriguez and 17-year-old Michael Lunsford.
Police say one man held down the victim in the bathroom, while the other sexually assaulted him with a plumber's tool, a snake used to clear drains.
The victim was found on the floor, bleeding with severe internal injuries."
-via abc.local.com [Long Island]

"Deputy Prosecutor Derrick Julkes said the 29-year-old victim, who is mentally disabled, has continued to suffer, as has his family. Prior to the beating, the victim was able to perform odd jobs, but he can't now, Julkes said.

Ward and co-defendant Pierre Lamar Springer, 19, of Gary, followed the victim from a home where they all had attended a party. In the street, the two men punched the man in the face, knocking him to the ground, and kicked, stomped and hit him in the face, chest and legs. They also removed the man's clothes, beat him with his own belt and left him naked, court records state.

The man was airlifted to Chicago with extensive brain damage. As a result of the attack, the man cannot used one arm, court records state."
via www.post-trib.com

Statistics show that:

-women with disabilities, regardless of age, race, ethnicity, sexual orientation or class, are assaulted, raped, and abused at a rate two times greater than women without a disability (Sobsey 1994; Cusitar 1994).
-The risk of being physically or sexually assaulted for adults with developmental disabilities is four to ten times higher than it is for other adults (Ibid.).

Hate crimes against the disabled are notoriously under-reported for various reasons. Often police categorize them as cases of assault and don't address the hate crime. Or these crimes may be referred to as abuse.

A case from Anaheim California, where day care workers slapped two developmentally disabled men in the restroom for no reason was, for example, seen as a reason to develop a policy requiring protection of employees by requiring that two workers accompany residents. Sadly, the legal concerns involved are often addressed - from the point of view of the caretakers rather than the disabled.

This approach has failed to deter growing concerns of abuse from caretakers since underlying crimes often carry minimal penalties and screening people for such jobs may fall by the wayside by employers who need workers. Sadly sometimes this abuse is violent. Prosecuting violent crimes as hate crimes would be a further deterrent to offenses against the most vulnerable among the disabled population - institutionalized people.

Virtual Visiting Robot

The iRobot ConnectR, a robot with the capability of connecting to a remote PC so you can 'visit virtually' with people at a different location, allows you to read your kids a story or feel as if you're in the room with people you can't be near.

Yes, the iRobot ConnectR is coming to a neighborhood near you soon. A pilot program is going to hand out some of these little robots for the mere sum of 199 dollars to a pilot group (that has to be approved it seems) and then afterwards (in 2008 I believe) the robots will sell for 500 dollars a piece.

Doctors have been using robots like this to visit the bedsides of patients and have found them useful. Scientists predict that, like the Japanese who see robots more as potential social aids rather than the current US view of them as utilitarian (the roomba, the gutter cleaning robot, e.g.), Americans will come around to seeing robots as more of a social tool.

Anyhow here's the description for you tech lovers as to how the set up goes:

"Simple set-up

ConnectR comes complete with everying you need to set it up and get going including the robot, rechargeable battery, self-charging Home Base, remote control, headset microphone, and joystick. ConnectR is quick to install and easy to operate. You need a wireless broadband connection in your home and a Windows XP operating system on your PC. You simply charge the robot and follow the user-friendly set-up instructions to connect it to the wireless network in the home. Then you download the ConnectR software program onto any broadband-enabled PC, which enables you to contact ConnectR and use the robot to virtually visit the home." via irobot.com

{visual description: from their website: a family gathers in front of iRobot (unseen) to visit with Daddy who is on a business trip.}


And here's a photo of the robot in a room with a little boy who is playing on the floor.

(He thinks it's his father - no , his mother - wait, he's trying to get it to vacuum the floor...)

Pedestrian Hostile: Blog Carnival #23- Consider It Brought

Pedestrian Hostile: Blog Carnival #23- Consider It Brought

Bloggers gather again, this time to ponder the topic of Simply The Best.

And, my friends, yes you are. Go on over to read what everyone came up with...

Addiction Kills: The Compassion Factor

“The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another.”
--Thomas Merton

Why do I write about addiction on this blog? I've received numerous emails asking me that question in various ways. A few were angry that I included addiction on a blog about disabilities.

And my response was that I do consider addiction to be within the scope of this subject matter. I've met addicts whose entire life has been turned so backwards and upside down by their drug or alcohol usage that trying to work is out of the picture for either a long time - or forever - and they have to dedicate all their efforts to staying clean and sober. I've met far too many addicts who have just died from their addictions.

Our society preaches tough love toward addicts. This is for good reason since the disease of addiction causes much self delusion in those who suffer from it. However, the key word in that sentence I want to draw your attention to is the word suffer. Addicts do suffer. As selfish as they are in their full blown addiction, as much as they cause harm to others, they also harm themselves. When I work with addicts I'm often left wondering how on earth they could treat themselves the way they do. And this led me to pondering the compassion factor.

The difficulty I have with the way society deals with addiction today is that they hold up addicts in the public pillars for ridicule to the detriment of acknowledging addiction is a disease. Sure we have famous people doing stupid things. And what they do is often indefensible. And we have a right, perhaps an obligation, to teach our children that these people are examples of "what not to do".

What we don't do, and what I make a small, feeble attempt to do on my blog, is fully educate our children about addiction. For example, do we tell them that addicts are always addicts? Do we explain that addiction is a disease? Do we explain that it takes courage and bravery to go through recovery and get - and stay- clean and sober? And do we stop and think about the effect on our children of how we handle the subject of addiction? What happens if we have a teen or young adult - or famliy member - in recovery? How does media coverage of addiction affect those groups?

We need to handle the subject of addiction where we educate about the topic, not sensationalize it. I think our media is making so much profit off of poking fun at and publicizing the addictive behaviors of stars and public figures that the balance toward educating the public about addiction is way off. There are very few stories about public figures who are recovering addicts who put together long periods of recovery. The cameras stop whirring and go back to the slapstick active addict falling down on the streets of Hollywood.

When I use the words "compassion factor" I'm not suggesting that we enable active addicts or approve of what they do. I support tough love . But let's look at the whole, tragic picture of what addiction is, I guarantee the compassion factor would cut down on many peoples' somewhat insatiable appetite to watch public figures who are addicts fail - in their recovery efforts to save their own lives.

{Please click on the label below to see more posts about addiction.]

7th grader writes books about her service dog Mercer

Meet Mercer. Not only is he an assistance dog and the star of Marvelous Mercer, but his paw print will go on books sold this Saturday when he sits by the author's side at FAO Schwartz.

The real author, 12 year old Shea, has a rare form of muscular atrophy.

"Ever since 2004, when Mercer became Shea's assistance dog, they have been inseparable. At the mall, Mercer carries Shea's purse and will hand the clerk a credit card using his mouth and paws. At school, Mercer lies beneath Shea's desk, and when she drops a pencil, he gets it. They watch movies together, each with individual bowls of popcorn. When Shea goes to the doctor's office, he keeps her calm. If she's sick, Mercer won't leave her side.

Last Thanksgiving, while cleaning out her daughter's closet, Shea's mother, Megan, found six stories Shea had written about Mercer.

Over the past few months, the stories have become a six-book children's series. The first book will be sold exclusively at FAO Schwarz's New York store this month. It will also be available at shop.marvelousmercer.com and the websites for FAO Schwarz, Barnes and Noble and Amazon.
...
On Saturday, Shea and Mercer, whom Shea calls her best friend and her puzzle piece, because he completes her, will sign copies of the book at the New York store. Each book will come with a plush toy version of Mercer, Shea's autograph and Mercer's paw print.

A majority of the book's proceeds will go to Canine Companions for Independence, based in Santa Rosa, Calif. The organization, where Mercer came from, plans to use its share of the money to give assistance dogs to Iraq veterans from Walter Reed Army Medical Center in Washington, D.C. Some proceeds will go to the Spinal Muscular Atrophy Foundation, based in New York City, and Families of Spinal Muscular Atrophy, based in Libertyville, Ill., for research. A portion will also go to pay for Shea's medical needs."
- via USA Today

In the books, Mercer goes out on adventures at night - but, of course, always returns to be by Shea's side.

AIDS epidemic- its effect on South African families

In this piece, the changes to family structure in South Africa due to the deaths of young parents leaving behind orphans is explored.

"...[O]n May 26, 2005, Olga's sister Nono – a mother of four – died of AIDS. Since there were no other relatives to take in Nono's children, Olga took them in herself, and her family doubled overnight. In June 2006, Olga's family grew again, when Olga's aunt – a mother of two – also died of AIDS.

Hundreds of thousands of families in South Africa have faced both the grief of losing relatives to AIDS and the daily demands of looking after those they leave behind. South Africa has more children orphaned by AIDS than any other country in the world, with some 2 million South Africans having died of AIDS, and 5.4 million living with HIV, according to UNAIDS. Demographers describe South Africa's population as an hourglass, with a large number of elderly on one end and a large number of children and youths at the other end. In the skinny middle are a diminishing number of young adults, who are dying at the rate of 1,000 a day from AIDS."
-- via csmonitor.com

The poverty level in these countries heightens the difficulties faced by those left behind. Taking in additional children, many of them young, who need to be fed, educated and dressed is a daunting task for those struggling to support their own families. The orphans taken in by Olga talk about how she is the only relative who treated them equally to her own children, providing them with equal portions of food.

If interested, please click on the AIDS label below to find organizations working with these families.

Catching air...

So yesterday I received my replacement ROHO Mosaic air cushion. I wrote about my ROHO last February so basically I got about seven months out of mine - only due to my own fault, which I'll write about.

Over the years I've used (i.e. sat on) foam, gel, honeycomb and air cushions. The foam cushions are okay but over the years did not prove to be comfortable. I then tried a Jay extreme gel cushion. This was an expensive and disappointing experience for me as it bottomed out quickly. One of my wheelchair tennis friends also experienced this.

I purchased a Stimulite cushion with a honeycomb design. I use that one currently and find it to be lightweight and comfortable. I can move it from chair to chair and it's durable, easy to wash and basically was worth the cost.

One of my tennis friends had a high end ROHO cushion that's divided into quadrants and after I tried hers out I decided to go with the ROHO Mosaic, the low end one. (I found it for $69 online as opposed to her cushion which cost over 300 dollars.) There is a slight difference in the feel to the cushions, but both are comfortable and durable.

The Mosaic is a series of cells, as you can see in the photo above. You get a pump with the cushion and a cover. This cover is upgraded from the last one I ordered, which is nice since the cover on my last one seemed thin and wore badly.

Basically the pump is like a bike pump and easy to use. If you're a quad, it's safe to even have a kid help you with this since you simply put the air pump on the valve and pump until the cushion starts to bend - just make sure they don't overinflate it! I find that I have to repump the cushion every 10 days or so which is low maintenance considering how much more comfortable air has been for me than other types of cushions. My two biggest concerns with air cushions were the maintenance since I'm a quad and the fact that I have a very large cat who thinks he's Tigger and likes to jump rambunctiously on anything that bounces. The Mosaic is durable and my fears were unfounded. Mine was ruined when a sharp object was left on it by a visitor and I didn't notice in time. My fault, not Tigger's.

Which is why I go with the low end Mosaic personally. I recommend this air cushion. If you have the extra money, I recommend the higher end air cushions. But for the rest of us, the Mosaic is comfy, durable and reasonably priced.

Need more cushion advice? Visit USA Tech Guide, where folks leave reviews on the medical equipment they use.

Catching shadows...

I'm reading The Shadow Catcher by Marianne Wiggins. She writes about a photographer who took pictures of the Indians - and, at the same time, about herself as a writer.

She writes about the first time Gertrude Stein flew in a plane and thought the landscape below reminded her of cubist art.

She writes about traffic in LA and the back streets therof.

She writes so beautifully that I cannot describe the language she uses in any way other than "not to be missed" if you're an avid reader and lover of the English language.

Yes I know you're busy. Yes I know you have other things to do. I do too which is why this isn't a real book review. I don't have time. I'd rather spend any spare time I have reading this book.

Trust me on this.

Read it. Or some of it. Whatever you can make time for.

[visual description: The cover page of the book is shown. A photo of a mountain with a field in the foreground is depicted with the title of the book The Shadow Catcher and the author's name below.]

Wheelchairs - Going vertical !

I've used my share of wheelchair lifts in my life but never seen one like this. It's a glass lift that appears to come out of nowhere - appears out of a flight of steps. The best visual description I can come up with is that the flight of stairs folds like wall bleachers and the lift slowly becomes visible....

When worlds collide: Dealing with service calls

How do you deal with a service call when you have a disability?

This morning I have one scheduled. I know that there's a chance I'll get a technician who comes in, does his/her job and leaves. However, there have been times when I am asked to move items and perform other tasks they feel customers should do that, without an able bodied person here, I can't do.

I think of it as worlds colliding: someone who has no clue how profound my paralysis is enters my home and expects me to do able bodied tasks. Usually they're not familiar with my disability or trained in disability awareness. But it's an unsettling feeling at best and can be downright frustrating at worst.

I've decided, however, that the best way to handle it is according to the Tao of Betsy. Betsy was a woman I met at a Catholic retreat who, after watching me explain why I couldn't help make signs, took me aside and said "Just say no."

I blinked at her, newly disabled person that I was and said "What?"

"You don't owe any explanations to anyone. You don't need to even tell them the disability you have. That's medical information. Just say no. Period."

So the rest of that weekend I did exactly that. Since I was on staff at the retreat, the situation popped up fairly frequently. People assumed when they saw my staff label that I could do x, y or z. Just saying no was a very easy way to handle these frequent requests.

I also found that I no longer personalized any of it when I handled the situation that way. And it felt more like my reality- not everyone else's - was honored. The word 'no' aptly describes what I feel, think and experience internally when faced with a physically impossible task as in " No way." It's just nicer to leave off the 'way'.

So I know if this service person asks me to perform any able bodied tasks that I can't, I'll just say "No." Of course I have no clue what he or she will say when our worlds collide.

But it is only a service call.

Confined to a wheelchair

a new essay at A Different Light

Short movie review: Kids

I watched the movie Kids this weekend. It's a controversial 1995 award winning film that deals with the subjects of sex, drugs and the spread of the HIV virus among a group of NYC kids. One of the main characters, Telly, is a skateboarder who is positive for HIV. After Jen finds out that he infected her, she sets out to find him which leads her on a chase through his haunts.

The scenes depicting drug use ranged from casual use to parties that left bodies strewn in various rooms with kids unconscious. Casper, who was an addict, is depicted realistically as arranging his whole life around ways to find substances to take - everything from pot to booze to other drugs. This was one of the starkest realities of the movie since his character was one of the most likeable, yet frustrating to watch. And, sadly, Justin Pierce, the teen who played Casper later committed suicide.

The movie is filmed in a way where the audience clearly observes what goes on - almost in a documentary style fashion. The characters seemed so real that at times I found myself wanting to reach out and help them. The teen actors were street kids without acting experience, for the most part, which resulted in a realistic portrayal. It was a powerful film and dealt with heavy subjects, but a worthwhile journey into the subject matter.

Watching just one day in the lives of these kids could be the best argument I've ever seen for parents who hesitate to ask their kids questions about what they're doing with their time.

Viewer caution: This film contains profanity, nudity and violence, including a date rape scene.

[visual description: The DVD cover of the movie KIDS is shown. The cover is divided into four squares. Four of the main characters faces are shown and over each face one of the letters - K-I-D-S is shown.]

Free 411

There's a new free service called 1800FREE411 for those of you who have trouble dialing the phone - or just need directory assistance. The company inserts ads during the service that you have to listen to in order to get the number. (Looks like it's for everyone, not just disabled.) And don't forget - if you have a disability that prevents you from dialing the phone, you can apply for free 411 from your phone company. And that's ad free!

Where the wild wheelchairs roam..

Heck if I knew I'd roll over and join 'em.

But I do know one thing - after reading online message boards over at a few forums, the "self help" fix it up tips for configuring wheelchairs the way users want 'em are growing by leaps and bounds. And this, in my opinion, is a great thing.

First of all, those of us who use wheelchairs know best what tweaks are needed to get our chairs to work in various environments. When a new wheelchair user asks one of us a question, we have the real life experience to answer him/her. We also can share what's comfortable for us, where and how we get our equipment and supplies at the most reasonable prices and what pitfalls to avoid.

There's also a growing trend toward adding accessories that personalize wheelchairs. I saw an entire thread devoted to places to buy castor wheels - with various patterns and rock groups on them. Very cool. Because we're in our wheelchairs all day, they do become part of our appearance and it seems that there are a lot of folks checking out different looks for their chairs. And for fashion tips for wheelchair users, check this site.

And last, but not least, I noticed that people are encouraging wheelchair users who order new chairs to empower themselves more in the process - to speak up about what they want in a chair and to review the measurements carefully to avoid ordering errors. This is a positive thing since most wheelchairs come custom made and are of little or no value if configured improperly. In one instance, a woman whose wheelchair was ordered with the wrong measurements refused delivery - and she was able to get another chair. This was because she was careful about the entire ordering process and the error happened on the seller's end.

So before you order that new chair or if you're new to using a wheelchair, I recommend you check out a few message boards online. There's a great one over at Wheelchair Junkie and I also recommend the CareCure forum. Don't forget the USA Tech Guide, where you can read other wheelchair users' reviews. Ziggi over at Wheelchair DIffusion has great posts on wheelchairs and all things pertaining to them.

If anyone wants to add more suggestions or message boards they've found helpful in the comments, that would be appreciated.

A young Catholic...

writes about how she is tired of Christianity lite. She points to a young Christian in Philly who is doing work on the streets with folks and suggests that faith should dare us.

Sr. Edith honored for her dedication to accommodating disabled students

I was not surprised when I went over to read Monastic Musings, Sr. Edith's blog, to see that she was honored at her college by receiving a faculty award for being the most accommodating faculty member by their Disability services center.

Sr. Edith contributed several posts to Blogging Against Disablism Day (B.A.D.D.) and blogs on issues related to disability as a sociologist. Her perspective is both informative and thought-provoking.

Her many comments on my blogs are also appreciated and have taught me a great deal about the importance of allies as we all work toward inclusion.

Congratulations, Sr. Edith, on a well deserved award. If you'd like to congratulate Sr. Edith and/or read more about her award, click the link above.

I'll be leaving this post on top all day tomorrow - in tribute to all the allies we all have in our lives.

Complex ownership of nursing homes confound government regulators...

...seeking to collect fines for poor care of patients as well as families who are potential litigants when patients suffer. This NY Times article discusses the ways ownership is layered in various companies, which stymies those who are trying to hold owners accountable when patients die or the nursing homes fail to meet minimum levels of care.

"As such investors have acquired nursing homes, they have often reduced costs, increased profits and quickly resold facilities for significant gains.

But by many regulatory benchmarks, residents at those nursing homes are worse off, on average, than they were under previous owners, according to an analysis by The New York Times of data collected by government agencies from 2000 to 2006.

The Times analysis shows that, as at Habana, managers at many other nursing homes acquired by large private investors have cut expenses and staff, sometimes below minimum legal requirements.

Regulators say residents at these homes have suffered. At facilities owned by private investment firms, residents on average have fared more poorly than occupants of other homes in common problems like depression, loss of mobility and loss of ability to dress and bathe themselves, according to data collected by the Centers for Medicare and Medicaid Services.

The typical nursing home acquired by a large investment company before 2006 scored worse than national rates in 12 of 14 indicators that regulators use to track ailments of long-term residents. Those ailments include bedsores and easily preventable infections, as well as the need to be restrained. Before they were acquired by private investors, many of those homes scored at or above national averages in similar measurements.

In the past, residents’ families often responded to such declines in care by suing, and regulators levied heavy fines against nursing home chains where understaffing led to lapses in care.

But private investment companies have made it very difficult for plaintiffs to succeed in court and for regulators to levy chainwide fines by creating complex corporate structures that obscure who controls their nursing homes." Via NY Times

Those who have formed these types of ownership claim that the nursing home industry will not be profitable any other way while others say this is exaggerated.

What does autism mean to you?

-is the name of this video. Some interesting bits in here, if you'd like to view it.

This is best for you

How many times I've heard those patronizing words since I've acquired my disability. In fact, it's so common I've taken to clocking people to see who gets the record.

So far the winner is a secretary at a local DME provider who "decided" which wheelchair was best for me in less than a minute. I suppose she had a chart in front of her which indicated the exact model to "prescribe" for a quadriplegic. When I brought up the issue of what medical folks thought I should have, she promptly replied "Oh no. The model I gave you is the one you need. Let me set up a fitting." Just like that. No wonder people just buy online.

Then there was the nurse who kept insisting I should take a medicine - which I was allergic to. Instead of checking my file, she kept interrupting me and then said "This is best for you. All quadriplegics take it." I shuddered and left the doctor's office without a prescription -or paying for the visit, considering they were apparently treating another quad who didn't have the allergy!

Then there are the hordes of (well meaning) friends and family who tell me what is best for me. "Stop working," they say. "And go on whatever the government gives you. If I were you, I wouldn't work."

To which I reply "Go ahead and stop working if you want. I'm not stopping you."

"But -" here it comes - "this is best for you."

Arggghhhh! Or how about this one? One friend handed me a Silvert's catalogue full of specialized clothing for the elderly and disabled and told me that I was being inconsiderate of those who assisted me if I didn't dress in these sack-like dresses "to make things easier". Oh, please. Why not just drape a plastic lawn bag over me in the morning, shower me in it since it's waterproof and whisk it off at night? That would be easier if we're going to throw all fashion sense out the window. Of course, when I protested, she used the words "This is best for you." And she added "Also for everyone else."

I hate when what's best for me is wedged in there with a guilt trip about it being best for everyone else too. But at least it's more honest. Because about 95% of the time when people tell me something is best for me, the bottom line is it's the easiest way to go about things for other people. What they really should be saying is "This is best for everyone else".

That list could include all kinds of things because, let's face it, having a quad around is work. It could lead to a scene where someone decides it's best for everyone if I "go somewhere where they can take care of me" or best if I "take a little pill so I'm not a burden anymore".

So the next time someone out there wants to label me as difficult, just stop and remember that those five little words are mighty dangerous for a quad who just agrees with them no matter whose mouth they pop out of. I'd like to suggest to people that they be more discerning before using them in situations they know nothing about, especially as concerns my health, life, clothing or decisions I make as an adult.

If they're listening (which I doubt) I really need to say "This is best for you."

Australian advocacy group launches a new plan

"The leading national advocacy group, People With Disabilities, has launched a plan which it says will address better access to mainstream services and reduce the need for institutionalised care.

The plan was launched in Sydney last night.

Members of People with Disabilities expressed concern about a lack of dialogue with the Federal Government.

People with Disabilities' vice president Faye Druett says carers get plenty of attention at election time but the disabled community feels ignored." via ABC.net.au

The group's positiion is that, with changes to community care and services, more people can live in the community and many will lead less solitary lives.

Gunshot survivor writes graphic novel

Central Comics Zone blog features a new graphic novel by Percy Carey (aka MF Grimm) called Sentences, about a main character who is shot and paralyzed by a bullet.

The book is autobiographical . MF Grimm, remembered for appearing on Sesame Street as Percy, survived eleven shootings in 1994 which orginally left him deaf, blind and paralyzed. He regained his sight and hearing but remains paralyzed. The blog says:

"Percy Carey (aka MF Grimm, aka Jet Jaguar) begins the story of his life in the middle of its most intense moment: the day a bullet left him paralyzed from the waist down. It's a scene of incredible violence and chaos that leaves our narrator lying on the snow, bleeding out. And from there we naturally cut to... Sesame Street, where young Percy has an acting gig.

The jump from bloody murder to such innocent surroundings creates a nice bit of cognitive dissonance that sets the tone for the rest of the book. Throughout the rest of Carey's childhood, we see him constantly pulled between "good kid" and
"bad kid". It seems like he could fall either way at any time, and he often does."
via Centralcomicszone.com

An excerpt can be found here.

Misnomer No More

a new poem - also over at A Different Light

MISNOMER NO MORE

Misnomer
Miss No More

Mislabels
Unsuitably attached

To the back of my wheelchair
An airline ticket that says luggage

To my refusal to take pain meds
A charted note : noncompliant

To the table in the darkest ugliest corner of the restaurant
A blue handicapped sign

To when I do ordinary things
The term inspirational

To when I do things differently
The word pity

Misnomers
Knee jerk responses, unfair to one whose knee only spasms

I am not yours to label
To patronize, to judge

To reflect
Meaning
That is yours, not mine.

Copyright 2007 Ruth Harrigan

The Grace of Living with a Disability

I see the grace in my disabled friends every day. I'm not talking about them being inspirational, because this is different. I'm talking about living with grace and about God giving us grace. Both are true.

I'm firmly convinced that the reason many people who shy away from disabled people do so is because they see a deficit, not the grace. Because they're unfamiliar with how it is to live with a disability, they focus on what they perceive the disabled person can not do. Often their assumptions about this are wrong.

Many disabled people do things in a different way. We may not walk but we roll, for example. The point is that we still get around and are mobile. So what can at first glance look like an inability to do something may be a matter of realizing that there is an ability to do it differently. Unless people get to know disabled people, they don't learn this. No words I say can convey to anyone who hasn't been around a disabled person that our experience of living is as full and vital as theirs.

This is why I believe the word inspirational is overused. Living with grace, to me, is not about being inspirational. It's about embracing who you are and participating in the world and serving others. It's an inside job, not a press release. The part where spiritual grace comes in is that I believe God gives those of us with disabilities the grace to find our way in this process. God grants us his "unmerited favor". He guides us and leads us on our spiritual journey, as he does for everyone. God may be inspirational, but I'm not.

Sometimes our journeys are not easy, but that's not any different than for any other human being. Our journeys at times may be more difficult because of how society and others perceive our disability. There are other times when it's not an easy journey because of how we feel about the disabiilty and the issues it may present.

But when people look at disabled people and say "There but for the grace of God go I", they miss a very important point. Those of us with disabilities are not to be pitied. Disabled people live full and vital lives.

And we also live with and in grace.

Response filed in lawsuit against God

The court clerk reports that "poof!" suddenly there were papers to be filed in response to the lawsuit filed by Nebraska Sen. Chambers against God. (see post below)

The "response argues that the defendant is immune from some earthly laws and the court lacks jurisdiction.
It adds that blaming God for human oppression and suffering misses an important point.
"I created man and woman with free will and next to the promise of immortal life, free will is my greatest gift to you."

via Foxnews.com

Sen. Chambers, who is an agnostic, said in interviews that he filed the suit to raise attention to frivolous lawsuits.

Autistic teen tasered

In California, a teen with autism who ran away from a social services center was tasered by an officer as he ran in and out of traffic. According to the article, a police official commented that the tasering was done so the teen would not be hit by a car and happened after a second car swerved to avoid him. His parents have said police overreacted.

Becoming : Finding Ways to Express Yourself

"What is she doing?"
"Writing."
"Can anything be done about it?"
-from the movie Becoming Jane

My grandmother believed that girls who spent too much time reading and writing would become ill. In her day, girls were discouraged from getting "too much education". So, confronted with a granddaughter who had an insatiable desire to learn and write, she constantly appealed to my parents to quell my "unhealthy habits".

So when I saw the movie trailer for Becoming Jane with this dialogue, I laughed out loud. My niece would probably be baffled and shake her head at the illogical thought process behind these words, but anyone who knows the social mores of the time period in which Jane Austen lived knows these beliefs about women were a very real roadblock to females not that long ago - and vestiges remain.

So it is with disability. Disabled people have also historically been denied access to ways of communicating or the means thereof. We need to encourage people with dsabilities to express themselves - through art, writing and other means. This is an exciting time because people with different disabilities are using more mediums to do so as technology advances. As we open our minds to redefine ways to express ourselves, the results will be astounding. Technologically speaking, we've come a long way from Jane Austen sitting outside a country cottage with a pen and notebook in hand.

If you have a disability and you're reading this, I encourage you to find a way to express yourself. What you have to say is valuable. Once you empower yourself to speak up on topics that matter to you, you'll find others who are doing the same. There is nothing like having a community to enhance the quality of your life. All you need to do is google and look around the internet to find different groups of folks with common interests who do that on message boards - and that is simply the tip of the iceberg.

In my opinion, what matters is that we use every means at our disposal to achieve inclusion. Sometimes the internet is our best way to do that or, perhaps, our only way. Use it. Become a voice. And, perhaps someday,someone will speak these words about you:

"What is he/she doing?"
"Writing/filiming/drawing/dancing."
"Can anything be done about it?"

It will be your signal that not only are you blowing away others' expectations of what you can or cannot do or should or should not do- but a reason to keep doing it. Because you will meet many folks who are interested in hearing what you have to say - and who are traveling on the same journey. I call it a dialogue toward inclusion.

In the video below, the Disability Mural, which reflects the experiences of people with disabilties and those in their lives, is featured. The video contains audio and closed captioning.

Power plays in negotiations: Calling their bluff

A new essay over at A Different Light

A power chair is not a toy

My Broadway play is coming along. And, yes , it includes disability themes and of course it's a musical. It has to be.

As I'm working on my Broadway play about disability, naturally I'm revisiting some of the classic broadway shows. And I think I'm getting closer to writing songs that really will work.

How to Succeed in Business Without Really Trying gave me lots of ideas. Take the song A Secretary is Not a Toy. In light of my big fluffy cat's tendency to boisterously jump up on my powerchair from over my shoulder, landing on the joystick and sending us both on a wild ride, I easily came up with :

A power chair is not a toy
No, my boy Not a toy
So do not go jumping for joy, boy.
A power chair is not . . .
A power chair is not . . .
A power chair is not a toy.

A power chair is not to be
Used for a landing zone.
Be good to the joystick, boy.
Remember no matter what
Neurotic trouble you've got
A power chair is not a toy.

It's a highly specialized machine
Of parts - like a nut and a screw,
A fine and sensitive machine
To serve the disabled, not you.
So remember - a power chair is not a toy."

It's coming along.

Although perhaps I should have written about how a reacher is not a toy....

Talk Like a Pirate Day

Greg over at Pitt Rehab reminds us that today is Talk Like a Pirate Day ! Last year I missed it so I did better this year by picking up on it late afternoon. I'll have to rush off some emails to my nephews and annoy them with my attempt at pirate banter.

Ahoy mates! Wait, wait, I'm rolling off the plank.....argh....

Disabilities & Parking Awareness Day in Baltimore

Today there is a

"crackdown by city and state officials called "Disabilities and Parking Awareness Day," is taking place today at some 15 locations in the city, including Charles Village, Good Samaritan Hospital, the University of Baltimore at Mount Royal Avenue, Mondawmin Mall, Reisterstown Road Plaza and The Rotunda.

"In Baltimore City and other areas there's a constant problem with handicapped people not being able to park where they need to," said Sidney Hyatt, the MVA's assistant manager of investigations, who was observing the crackdown downtown at 7 a.m. "There are people abusing handicap placards and people using stolen ones." via baltimoresun.com

People abuse the placards in some states not only to get parking spots but to avoid paying meter charges.

The kiosk approach to health care

I recently read in an article that, in an attempt to cut down on lines by patients waiting to be checked into ER's, some hospitals are trying out an automated kiosk system, where patients put in their own information - and are then seen in turn according to information they provide. Of course the wait to see a doctor is still the same - and long - in many places, but nurses report that it cuts down on staff's work and some patients seem pleased with it.

Last night as I watched the movie Idiocracy, the hospital scene reminded me of this article. I don't know if you're familiar with this movie, but it's about an average guy from the Army who is put into hibernation (supposedly for a year) as an experiment but winds up waking up in the year 2500 or so. As he brushes himself off and emerges into this new world, he realizes that it's a "dumbed down" version of our society. The movie's premise is that the folks who had kids had, well, the lower IQ's and over time this produces a generation of subverbal people.

As Joe goes looking for help, he sees the front of a hospital called St. God;s Memorial Hospital and the lettering kind of falls off at the end because it just didn't fit - or someone couldn't figure out how to make it fit. Inside the receptionist has a board in front of her - with pictures - showing possible patient complaints. She never says a word to Joe - simply hits a picture on the board showing a stick figure holding its arms up with two question marks next to its head in response to his explanation that he woke up from an experiment and doesn't know where he is. I suppose that picture was the best fit. And that reminded me of the kiosk, for some reason.

I must admit, as a person with quadriplegia, that I cringe whenever I see things set up in our health care system that create more access problems rather than alleviate them. I'd hate to try to get the attention of a busy staff member if I can't use a kiosk system due to my disability simply to get information put down. And I wouldn't be too keen on asking another patient to help me enter this kind of information.

And what about the questions it inevitably leaves out because suddenly we're reduced to a preprogrammed set of questions? Oh ,I know, one could debate this issue and say that the computer would do a much better job than some humans would, but shouldn't hospitals be providing a knowledgeable employee to take this information down? Having paid my share of ER bills, I would be delighted if I thought it would bring the price of care down, but there was no hint of that in this article. So unless it cuts down the wait to see a doctor and improves services, as long as I'm sitting around for the inevitable wait for a doctor, I'd rather be checked in by a human being. Otherwise it appears to only save the hospital staff's time, not mine.

After watching Idiocracy and seeing how they relied even more on these kinds of techniques in their care, I found myself disliking the kiosk idea even more. Because the next thing Joe had to undergo was sticking probes into his mouth, ears and rectum so that a machine could diagnose him. Well, it would save the staff's time....

Senator sues God

A Nebraska Senator has filed a lawsuit against God . Sen. Chambers' complaint asks for a permanent injunction and states:

"defendant directly and proximately has caused, inter alia, fearsome floods, egregious earthquakes, horrendous hurricanes, terrifying tornados, pestilential plagues..."


-via Foxnews.com

Click above to read the rest of the story.

"

Tasering the annoying student who won't shut up...

A U of Florida student at a John Kerry event was tasered when arrested after he took the mic near the end of the event and hammered Kerry with questions. The blogosphere is bursting with reactions, from the opinion that the campus police (yes campus police) who arrested him overreacted to some who say he should have gone along peacefully whether or not he realized he was under arrest - or what for.

It reminded me of students in my classes during my long educational haul who always waited to ask the teacher a question at the end of class - usually a three part-er. "Ummm, can you explain the theory of relativity please?" "Oh and professor could you apply that to how that would work in an example?" "Oh and also how does this theory relate to the rest of the field of physics - on an international level, both current and over the past fifty years?"

How annoying is this, huh? So I had this sudden mental image of what would have happened if a campus cop had come into the lecture hall, tried to remove the student and then tasered him. But of course in a university setting it's really hard to imagine that campus police would remove a student for asking questions, right? There are rules at events, however, so that of course differentiates this situation. But the irony of a student who is asking questions being arrested and tasered by campus police - well it's pretty strong.

An outside investigation is going to be conducted of the way the incident was handled. It looks from the video that the student was already on the ground, surrounded by a number of campus cops when he was tasered. A spokesman from the U of Florida on CNN this morning also said that the student became physical and a number of officers were injured before he was taken down. He acknowledged the student was not armed.

A student protest is scheduled for noon today. I hope no one gets tasered.
[visual description: A taser gun is shown, measuring 6 inches across and 3.2 inches down. It is black with yellow decals located behind the cartridge marking it as a non lethal weapon.]

Things reporters have to say - or write

"The snake you just saw Matt holding isn't the one that bit him. He no longer owns that one." via CNN broadcast

Sometimes at the end of a video clip on one of the 24 hour news station, the news announcer stops, looks at the prompter and then, with some resignation, reads inane words like this to the audience - with a straight face. Usually. Once in a while, he or she can't pull it off and simply chuckles or points out how inane the words are.

I sometimes wonder if there are frustrated writers behind the scenes who have their fun by wording things this way and then watching the newscasters deal with it.

But the news in and of itself creates constant awkward, very human situations. No matter what the story is, there remains not only the potential and risk of getting the facts across wrong but in a biased or offensive way - or both. There's always the message - and the meta message, as they say.

When I studied communcations at Rutgers as an undergrad, it was a new field and our studies of the media were drawn from other disciplines, like sociology and political science. Although I didn't enter the communications field, I'm fascinated by the variables that affect our viewing as well as the dissemination of news. And, although the methods used now are much more sophisticated than when I studied the field, how much does the human factor enter into what a reporter, well, reports - or says - about a story?

What comes to mind is one reporter who stood outside a hotel during Hurricane Katrina, watching as bits of the roof - and trees - flew by where he stood, rain soaked in a poncho. Others were holding onto him at times so he wouldn't join the debris blowing down the road. The situation seemed to create one in which his experience of the hurricane was like a resident's. But it took one interview with a true victim who lost his home in the aftermath to realize how staged this presentation, no matter how dramatic, was.

The same is true when reporters report on issues about disability. I just read a story from wsbtv.com carried on CNN about a possible suspect in a murder who has no arms. He was referred to as the armless man about half a dozen times and I pictured the reporter pondering how to refer to him and finally settling on "the armless man". Mentioning it once is quite different than having it not only in the headline but as the only description of the suspect. The metamessage? I suppose it may seem to some that I'm picking on the reporter until you stop and consider what the purpose was to constantly refer to him as "the armless man", choosing a term that not only defines him as "less" but as different and, in a way, representative of his disability.

We are all the sum of our parts and none of us who are disabled are just disabled. I'm not just a quad. I'm also Irish American, a female, and Catholic. I could probably list a dozen other classes I fall into, but the point is that when reporters report only about the disability, that one dimensional view in and of itself is reminiscent of the "staring" phenomenon. Oops - armless. Wow. And it stops there. This is dehumanizing because it implies that all we are is our disability.

Like the reporter standing outside to report on a hurricane, those reporting on stories about disabled people need to be careful to remember that the lenses of their camera or the words they type are about people as well as events. They reflect social mores and their own beliefs.

And they can look as ridiculous as the newscaster telling us that the snake the man is holding is not the one who bit him.

NY Times to stop charging for online areas

If you read newspapers online, you'll be happy to hear that the NY Times has decided to stop charging fees for access to certain parts of its online area. Starting at midnight, the Times Select area will be free.

"n addition to opening the entire site to all readers, The Times will also make available its archives from 1987 to the present without charge, as well as those from 1851 to 1922, which are in the public domain. There will be charges for some material from the period 1923 to 1986, and some will be free." Via NY Times

Representatives said the change was made due to growing revenues made from online ads and the unanticipated number of readers arriving at their site via links from search engines, which contributed toward the decision to drop the fee program.

Funny ha ha....or not?

Watch this video for "I Can Love You in a Wheelchair Baby" with Benni Hemm Hemm. Apparently they're a folk/pop group from Iceland known for doing songs on topics that are out of the mainstream in a comedic manner....not to be taken too seriously one web site says....but again, a disability theme used . So what's your reaction?

How much does yellow cost?

So my quest to try to get a power wheelchair that will take me outside continues. And I've discovered something - I can't even afford to buy yellow!

Here's how buying a wheelchair works if your medical condition requires a custom chair, with your measurements, so that you fit properly in it and don't get any skin problems or other complications. Features on a chair, which add to the base price, like tilt and recline, may be necessary depending on your health. Or suspension which, if you're prone to spasms, may be needed. And, of course, there's the all important question of the color. Since I plan to use this outside, I want a bright color so I'm seen if I go out and about in the neighborhood crossing streets where folks like to play zoom zoom with their cars.

Anyhow, based on my medical needs, the chair I need was narrowed down to two or three possible models. I've been looking for a gently used chair in these models that has the most important configurations I need or what they call a demo or a "quick ship" model which some folks provide that is configured for quick sale and can save money. So far no luck so I made the mistake of looking at new chairs.

By the way I did find two chairs this weekend for other folks and I'm very happy about that. It was through private individuals, which is usually the way I find chairs for people after doing lots of reading. I want to thank the people who stepped up who had chairs and made deals possible. Like many other people I've assisted, these folks have insurance (be it Medicare or private) but their claims were denied. (So as presidential candidates talk about everyone having insurance, my question is: will it cover wheelchairs and other equipment we need? Those are the kinds of tough questions those of us in the disability community need to be asking.)

Anyhow back to trying to get a chair for myself. I called one place up this weekend. Even with cutting out some of the things I need, the price came to eight grand- which is daunting. So I said to the guy "Can I buy this in pieces?"

"What do you mean?"

"Could I buy just the piece that's yellow?"

"I can't sell you just part of a wheelchair," he said. Then he added "I don't think."

I think he can. Because, let's face it, I was chopping off parts I need left and right just to get the price down.

It would help to have a 3D model here to inspire me . And I really like yellow so that would particularly help me along. In fact I might hold that piece in my lap and pretend I'm outside rolling around. Zoom zoom. Just think - kids in wheelchairs would get great training to become engineers. Their parents could hand them each piece as it came in the mail and say "Here, Johnny, Daddy worked some overtime so the cross bar came in today. Why not add that to the rest of the frame? Why, in about a year or so you'll be able to get out of that chair that no longer fits you and into this one!"

And Johnny could roll across the room to his Daddy, exhausted on the couch whom he hasn't seen in three weeks because of working overtime and say "Thanks, Dad! Could you get the wheels next? I think I can duct tape the rest together."

It might even lead to new wheelchair designs if they gave us just the pieces. I can imagine people would get very resourceful putting the pieces together if it meant they could get out. I know I would.

In fact, maybe that's what they're afraid of...

Wheelchair Ballroom Dancing

TV coverage of wheelchair ballroom dancing at American Dance Wheels is shown in this video sent to me by a reader. (Thank you Ed!) It shows a couple who are champion ballroom dancers, one of whom uses a chair. It talks about classes for wheelchair dancers and how it affects all of the dancers.

Inclusion? Wow. Now that's exciting.

Here's a list of events from the American Dance Wheels site:



UPCOMING EVENTS

Mayor’s Commission on People with Disabilities Award Breakfast<
Annual awards event for local leaders on behalf of the disabled community.
ADF performance.
Friday, October 26th 2007
Marriott Courtyard Hotel, Philadelphia, PA

New Jersey State Open
ADF performance at this national Ballroom and Latin dance competition.
Weekend of October 26th - 28th
East Rutherford, NJ"

Click the heading above for more details.

Pray for Notre Dame

"We have to worry about Notre Dame.I can't worry about Michigan. I can't worry about Michigan State. I gotta worry about Notre Dame. I gotta worry about me. I gotta worry about my coaching staff. I gotta worry about my players. And you want to know something? Justifiably so, after you lose a game like that, the scrutiny that you come under after a game like that has to be expected. It just comes with the territory."
-Charlie Weis, Notre Dame football coach

Notre Dame was soundly defeated by Michigan yesterday afternoon at the home of the Wolverines. Having attended many a game at U of M, I'm familiar with the intimidating (and large) atmosphere of their stadium and, as I watched on TV as Notre Dame took their third pounding (and subsequent loss) of the season, it sometimes appeared that U of M was playing a high school team that wandered into the stadium by mistake.

I've watched both teams for years. And over all those years I've never seen a Notre Dame team in need of so many prayers. Some are saying it's because the school puts academics over athletics. According to Wikipedia, "Since 1962, Notre Dame has graduated 98.74% of its football players in four years. As of 2006, only 13 football players in this time have left Notre Dame without finishing their degree requirements. Also of note is the 90% graduation rate of ND's African-American players". Hmm. It is college - football. College. Football. But, alas, fans want wins, not just degrees and these stats aren't going to be plastered across anyone's TV screen during a game, are they?

The coach vows to take them back to basics and training camp, but the reality is they have a four hour Sunday practice today and , of course, face another opponent next week. Notre Dame is in trouble but I do have a suggestion for those folks who shine the Notre Dame helmets - make 'em as bright as you can and let's hope for a lot of sunshine. Maybe the glare will distract the opponents.

Oh - and pray for Notre Dame.

[visual description: Photo shows a huddle of Notre Dame players, their gold helmets shining in the sun. One player holds his helmet up above the others.]

Removable Parts - The Experience

I posted about a week ago on the show Removable Parts showing in NY City - about BIID and voluntary amputation. A musical. Wheelchair Dancer was able to get to the show and wrote about it , as well as a panel she and her friends attended afterwards.

What's so interesting about her observations and experiences is that the response to the disability issues involved seemed to be no more aware than those writing the Monty Python scene herein pictured where a knight lops off his limbs for comic effect.

She writes:

"The panel admitted that including disability in the title of the panel was a "mistake." No one, not the people on stage, not the staff of Here Theater, not the audience wanted to get to grips with a possible connection between the disability community and the voluntary amputation community: we were told that disability was not relevant."

And, although I suppose that is one approach toward including disability subjects in your work (of art), people need to realize that doing that will elicit a reaction from those of us with disabilities. Because you can't deal with a subject like amputation without bringing up the subject of disability and how it's presented. And you're going to have reactions, especially when you put your work on a NY stage. Stage it in your own garage? Well, maybe you could pretend it was your own little private show that doesn't merit scrutiny. Put on a play at a summer camp? That's understandably not going to receive as much feedback. But in New York? Difficult to believe that folks would feign surprise, especially when they put 'disability' in the panel, that there won't be a reaction.

Sometimes the disability community's reaction is an amused or bemused one or outright laughter when disability is handled awkwardly , yet does no harm. At other times, it can be quite a serious thing, because treating the subject of disability with as much thought as slapstick comedy -well, it's just not funny.

Click above to read Wheelchair Dancer's post.

And I still haven't given up on my dream of writing a Broadway play about disability. In fact, I'm working on a song right now.

visual description: [A knight dressed in black with his left arm cut off stands with his sword to the ground held in his right hand in front of a white knight.]

Shakespearean quotes - and the memories of a friend

When I found out that my best friend from high school passed away, I remembered her for many things - a hundred kindnesses, many laughs and - most of all - our shared love of literature, history and languages.

No one else but her ever cajoled me out of a bad mood by quoting Shakespeare - which she did all the time. When we went through hazing , only she would get up on a chair in the cafeteria and begin what was supposed to be the school song by starting with "Friends, Romans, countrymen - lend me your ears - if you dare" making me laugh so hard that I almost fell off my chair, shy as I was. It didn't get us out of having to sing, but we were laughing so hard the seniors found no fun in it and let us go.

It takes guts to toss out Shakespearean quotes in high school classes, but it never stopped her. When our favorite teacher announced he was giving us a surprise quiz, she'd quip "Et tu, Brute?" And when I couldn't find a pen to take a test one day, she watched me going through my bag frantically and predictably started in with "A horse! A horse! My kingdom for a horse!" as she handed me a pen with a grin.

Okay, so it could get on your nerves once in a while. But it usually made me smile. And it makes me wonder what Shakespearean quote she'd fling at me, watching me today. I wouldn't mind a few lines from A Comedy of Errors some days. It would seem appropriate.

Perhaps you'll bear with me as I offer, on her behalf, a line from Julius Caesar - "And this was the noblest Roman of them all." She would have liked that.

If I had a power chair that could go outside..

I'd be out right now. I have a manual chair but two injured shoulders so can't use that to go out. I have a scooter but am too tired to sit up in it- from working .(That trunk control thing.) I have a power chair but it's an inside one- and since I bought it on ebay, it's old. Really old. But a lot better than nothing. I'm one of the lucky ones.

Yet I feel inadequate because, although I work as hard as I can, I can't afford to "fix" this. Not only for myself, but for many others I care about. We are not alone. The way the current system is set up, I fall through the holes of it like many others.

So if anyone else out there is reading this and can't afford what they need, but is being told it's their fault (either implicitly or expressly), let me share this little jingle I wrote today as I sit here, yet another sunny day, inside. If your wheelchair is broken and you can't afford to get it fixed, or you've put in a claim and you're waiting for Godot (no not the DME provider - it's a literary reference, google it) - join me.

I hope Peter, Paul and Mary forgive me for stealing their "If I had a hammer " music for this. I dedicate it to all the people on Medicare who suffer with the InHome wheelchair restriction and all my friends who are being denied insurance claims on their ultralightweight wheelchairs. Those who can, hold up your screwdrivers and do the wave as you sing along with me.

"If I had the right wheelchair
I'd roll in the morning
I'd roll in the evening
All over the land

I'd roll for freedom
I'd roll for justice
I'd roll for those who can't roll for themselves
All over the land"

Ok that's the easy part. I see you in the back - hold up that screwdriver! And what do you have there? Ooooh - a roll of duct tape. Excellent. Can I borrow some? Ok, onto the first verse...

"I could give a thousand reasons
Why we should all care
That the high cost of wheelchairs
Is too much to bear
Maybe one day you will know
First hand that you can't go
Anywhere without the right chair for you
Nowhere in the land.

I guarantee that
By then it's too late
'Cause when you speak up
You'll be told to be patient and wait
By others who are out and about
And don't get it when you shout
I want to roll and roll and roll and roll
All over the land!

There's only one hope
That we'll get out soon
That's if we all sing this song
Even if it's in our room
Sing it to everyone
Sing it out loud and strong
Because our words can ring
All over the land.

If I had the right wheelchair
I'd roll in the morning
I'd roll in the evening
All over the land

I'd roll for freedom
I'd roll for justice
I'd roll for those who can't roll for themselves
All over the land"

And, in the meantime, if I can't roll - I'll write. Because I see the neglect caused by the myriad of holes in our system as a crime against those who are on what amounts to house arrest.

May God forgive us all for looking the other way.

Click above if you'd like to learn about the Medicare In Home Restriction .

7 new autism laws in NJ signed by Governor Corzine this week

"The Governor signed A4055/S2558, providing for teacher training in awareness and instruction methods for students with autism and other developmental disabilities for candidates for teaching certificates, current teachers and paraprofessionals. The Commissioner of Education will develop recommendations to address a variety of issues including the characteristics of students with autism and other developmental disabilities; curriculum planning, assistive technology; and inclusive educational practices.

- A4056/S2568, requiring the Early Intervention Program in the Department of Health and Senior Services to address the specific needs of children with autism spectrum disorders and their families. These activities involve developing guidelines for health care professionals to use in evaluating infants and toddlers for autism, ensuring the timely referral by health care professionals of infants and toddlers suspected of being on the autism spectrum to the Early Intervention Program and collecting data on statewide autism screening, diagnosis, and intervention programs and systems.

-A4057/S2559, establishing the New Jersey Adults with Autism Task Force in the Department of Human Services (DHS). The purpose of the task force is to study, evaluate, and develop recommendations relating to specific actionable measures to support and meet the needs of adults with autism. These include job training and placement, housing, and long-term care.

- S/698A4054, which makes changes to the Governor's Council for Medical Research and Treatment of Infantile Autism, renaming it the Governor's Council for Medical Research and Treatment of Autism.

-A4059/S2569, extending funding for autism medical research and treatment. The bill eliminates the five-year “sunset” for the $1 surcharge established under P.L.2003, c.144 for each motor vehicle fine and penalty imposed by the court, which is deposited in the “Autism Medical Research and Treatment Fund.” The fund provides the financial support funding for the grant and contract awards of the Governor’s Council for Medical Research and Treatment of Autism.

- A2306/S2723 requiring the Department of Health and Senior Services (DHSS) to maintain a registry of reported autism diagnoses. The DHSS, in consultation with the Department of Human Services, will maintain an up-to-date registry to include a record of all reported cases of autism that occur in New Jersey; each reported case of autism in which the initial diagnosis is changed, lost, or considered misdiagnosed; and any other information DHSS deems relevant and appropriate to conduct thorough and complete epidemiologic surveys of autism, to enable analysis of this problem, and to plan for and provide services to children with autism and their families.

-A2291/S690, which establishes an Asperger's Syndrome Pilot Initiative in the Department of Human Services. The initiative will provide vocational, educational and social training services to persons with Asperger's Syndrome. This will be accomplished through community-based service sites which offer appropriate support; guidance and education that will enable these individuals to further their education achieve gainful employment and become broadly competent adults who are able to lead fulfilling lives."

via state.nj.us/governor/news/

Call of Duty 4 Accessible Gaming

The game developers at Call of Duty 4 responded to a disabled gamer's request to add an accessibility feature. Check out the story here.

Vatican affirms teachings on nutrition and hydration of unconscious patients

"The responses reaffirm the church position that patients in a “vegetative state” are living human beings with inherent dignity and deserve the same basic care as other patients. This basic care would include nutrition and hydration, even when provided through artificial assistance.

“The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life,” according to the Congregation’s response. “It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.”

The bishops also asked for clarification as to whether nutrition and hydration could be removed if physicians determined that the patient would never recover consciousness. The Congregation affirmed that the patient must receive “ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means” regardless of the prognosis of recovery of consciousness."

Via USCCB.org

Possible, but rare exceptions are noted at the link above.

Wheels run in the family

So my younger brother emails me last night via his laptop from his motorhome somewhere from the heart of Virginia. He writes something along the lines of gee didn't we have an adventure when I put the refrigerator on propane and we suddenly smelled something and wow there was smoke coming out of the top of the motorhome when we went outside to check and my wife tossed me a fire extinguisher and I put out the flames and oh boy some wires are messed up but it's okay we're not hurt. Oh and it smelled really bad that night sleeping.

Yikes.

And yet my mom has told me that having an accessible van isn't a good thing since those things break. It's a moot point considering what they cost, but at least I wouldn't have to fling a fire extinguisher around.

Is there anything more unnatural than trying to live - in a car? Although out of all the people in the world it doesn't surprise me that my brother attempts it on vacation since as a toddler he used to watch cars go by for hours in front of our house and could name any model by the time he was in kindergarten. He wrote Ford Motor Company when he was in elementary school and recommended an engine design. Forget playing with those little metal cars. He took the car keys and tried to back the family car out of the driveway - at 3 years old. He didn't get very far. Luckily. Although I still wonder if he really did already know how to drive. It wouldn't have surprised me.

And when he got his permit I took him out to supposedly teach him how to drive. It really wasn't necessary. After five minutes I told my mom he should just call and set up his test date ASAP - he was ready. He'd been ready for years.

I've watched him drive (race) sports cars, motorcycles, foreign cars, etc. not to mention jet skis and boats but never pictured him in a motor home. But hey it's on wheels.

And we all know that wheels run in my family.

When Accessibility doesn't always mean hospitality...

this NY Times piece discusses various issues facing diners in wheelchairs in the NY City area - and lists welcoming restaurants with accessible restrooms and helpful employees:

"Anne Davis, the program director for legal services at the New York City chapter of the National Multiple Sclerosis Society, said these restaurants have accommodating employees and restrooms that are accessible to wheelchair users.

AQUAVIT 65 East 55th Street, (212) 307-7311.

CAFé BOULUD Surrey Hotel, 20 East 76th Street, (212) 772-2600.

FOUR SEASONS 99 East 52nd Street, (212) 754-9494.

GRAMERCY TAVERN 42 East 20th Street, (212) 477-0777.

MAYA 1191 First Avenue (64th Street), (212) 585-1818.

O’NEALS’ 49 West 64th Street, (212) 787-4663.

SIP SAK 928 Second Avenue (49th Street), (212) 583-1900." Via NY Times

Although the article is very well worth your time to read since it raises many issues - such as where disabled diners are placed, where accessible restrooms (if they are really accessible) are located, how many restaurants' arrangements require other diners to move so you can get through in a wheelchair, etc. - I think includiing this list in the article is a wonderful incentive for other restaurants to try to do - better - to get our business.

In the way?

The inside joke I have with friends when I go out with them is the phrase "in the way". I was just reminded of it this morning as I was reading email and a person with a disability alluded to being "out of the way".

One of the things I noticed after I began using a wheelchair is that, due to the fact that moving in a wheelchair is different than walking, wheelchair users are perceived as - and treated as - being "in the way". At first, I was quite upset to realize this and went to great lengths to somehow get out of the way. However, over time, I began to realize that my wheelchair and I were going to take up a certain amount of space in any given time and place and that was a matter of physics, nothing else. In effect there was nothing I could do about it.

And I certainly can't control other peoples' perceptions. If they choose to see wheelchair users - or disabled people in general - as in the way, then that's it. It's certainly not helpful to inclusion - it's objectifying and, worse yet, creates an unnecessary hierarchy in terms of implying, somehow, that the disabled person can or should get out of the way.

This scenario , recreated over and over again, appears in many forms. If I'm waiting to use a handicap stall in a ladies' room and it's designed in such a way that the only place I can go blocks others, but if I move my place in line isn't preserved, then the Catch 22 situation of being in the way becomes obvious not only to me but to an astute observer. Narrow and small waiting areas, whether they are in restaurants or doctors' offices, create the same problem. So does poor placement of furniture that creates narrow spaces, crowding the ingress/egress space to a bare minimum.

So, until more awareness is raised about the physics of all this and the reality that more and more wheelchair users and others with mobility equipment and issues are going to be out and about, the inside joke of "in the way" will continue. Humor is probably a good tool to use - along with , of course, the goal of working toward and supporting Universal Design.

And, for the latest on that topic, I suggest you visit The Rolling Rains Report (just click above).

30 Days in a Wheelchair....

I found this video on YouTube , apparently Part I of a documentary prepared at a Michigan college by students who tried an experiment - two students were to use a wheelchair for 30 days, with some exceptions. (The rules are contained within the video.)

Their portrayal of the experience of using a wheelchair is almost completely negative. (Part 2, in my opinion, was even more negative and it's over there but I'm not going to post it.) Whether they realize it or not, they forgot to take into account numerous factors here. I'll explain below how that affects things. I also want to point out that projects where people are "disabled for a day" or even "30 days" aren't the same as being disabled, a point that's been made by others on the web.

I do think this video can work toward helping folks understand that adapting to a disability takes time. (Showing the first 30 days of anything is going to be a skewed view).

When you first use a wheelchair, you're not used to it. Naturally if you're pushing one, your muscles take time to develop. Also your environment needs to be adapted. So when they show a shot of a woman in a wheelchair who has a microwave oven over her head and is trying to find "something to eat and cook" from kitchen cabinets above her and she decides she can't do anything herself, that's a result of the environment, not being in a wheelchair.

However, some of their observations are interesting (and amusing) and, of course, I'm interested in readers' comments as usual, so thought I'd put this video up. Please note- violence alert- that the video opens with a re-enactment of a motor vehicle accident, showing the impact, glass flying and an air bag deploying.

Disability Blog Carnival #22: Resilience

Jodi hosts this carnival and she introduces it by saying:

"In honor of this being the 22nd edition, I have for you twenty-two posts on the subject of: Resilience. I have loved reading all of the posts submitted and in doing so I have learned quite a bit about the things that make people resilient. There are people who use humor or call on their faith in God. Their are those of us who adapt, persevere, adjust their perspective, come to accept, see beauty, find joy. Fasten your seat belts, because you are about to meet some incredible people."

Click above and head on over - enjoy!

[visual description: The disability blog carnival logo is shown. The word resilience is on the lower left and below it reads Disability Blog Carnival. On the right is a spider who is moving toward the words on the left that look like a web.]

Closed caption videos on Revver

Revver, a YouTube competitor, is announcing today that it's paid out 1 million dollars to posters.

So I wandered over there to see what the site is like and discovered that it also has closed captions on its videos . Thought I'd pass that info along....click above to visit it!