A prayer for Jerry - and all of us

As blogger Wheelie Catholic, my first response was to pray for Jerry Lewis and all of us when I heard bloggers were speaking out against the annual MDA Labor Day Telethon. I join them. And yes, I know the telethon has helped many people over the years. I have no problem with raising money for MDA. My issue is how it's being done. Despite the ADA and advances we've made because of it, the telethon continues to portray people with disabilities as objects of pity. In this day and age, why is the poster child approach still being used?

Public perception about those of us with disabilities is beginning to change as we go out into the world more frequently. Americans see us in restaurants, movie theaters and other public places. We attend college in higher numbers and are continuing efforts to improve our representation in the job market. Our mobility—if we have the means—is at an all time high. We have better equipment, better care and live longer and healthier lives. Much of this is related to affording all that’s involved. Many Americans with disabilities, adults and children alike, may have the civil rights, but not the means to live fully with a disability. We can't afford what we need to do this.

Raising money to help disabled kids get the assistive devices they need and providing for their families is a worthy cause. I know the high cost of living with a disability because I live with quadriplegia. My sister and her family struggle financially as they raise a child with CP.

The charity model is not the solution. Why on earth would we teach children with disabilities that begging is the answer? Is that part of their IEP program? I don't think so. While it’s easier to fork over a check once a year than to commit to a community effort, let’s change our social programs so people with disabilities can attain a certain quality of life with dignity.

This is why I’m saying a prayer for Jerry Lewis — and for all of us. It's time to address the real problems and make some real changes. Let's grow up and discard the poster child model and start teaching all children that people with disabilities are not to be pitied, but respected.

Vision World Wide

A friend alerted me to this resource to share with my readers after I emailed her with a link to Wheelchair Dancer's Braille Graffiti post .

From their website:

"Vision World Wide is a non-profit 501(c)(3) organization dedicated to improving the lives of the vision impaired through direct interaction and indirectly through the caregiving community. We serve both the totally blind and those with various degrees and forms of vision loss.

We provide invaluable information, education, guidance, support and consumer protection, not only to the blind and visually impaired, but to the many professionals (medical, social and technical) who serve them.

Do you or someone you know have eye problems? Are you a professional working with individuals who have vision loss? We are here to serve you through this web site, our telephone helpline, our E-Mail list, and our Webletters."

Their site has an audio message and a link to instantly chat with someone.

Getting in and out of a pool independently

This video shows how one guy with a spinal cord injury does it - independently.

Late Show Blogging

Just wrapping up my workday. I took yesterday afternoon off (well mostly) and spent today playing catch up on my work but it was worth it. Sometimes a mini-vacation has more quality to it than a longer one (or at least I tell myself that since a longer one isn't happening right now.)

I went to the beach and in one of those "Can you believe this" moments actually lived out one of my childhood fantasies. If you grew up near a place with a wooden boardwalk, you'll understand. Most of them aren't built with the pieces of wood just sitting side by side - although that's part of the design. They criss-cross the boards in various patterns so some are slanted left or right or even where they meet in the center. As a kid, I always wanted to steal one of those carts I saw riding up and down the boardwalk and try out speeding up and down the wooden boards.

Well now that I have a scooter, guess what? I sat there realizing that my dreams had come true! So I gunned my scooter down the boardwalk for a teeth chattering ride over some parts of the boardwalk and I discovered, after a very scientfic study that:

a. Placing the front wheel of a 3 wheel scooter on the straight plank with the back wheels each on different slants provides a really bumpy ride and
b. It's no fun just riding where the wood planks go straight- fast but boring and
c. Riding on the slanted boards is just right - not too smooth, not too bumpy.

While I was figuring this out, I ran into a policeman in his own cart. Well, luckily I just missed him because his cart was bigger than my scooter. He looked rather amused and waved to me. I'm thinking that he, too, has tried out different ways to ride the wooden boardwalk since he goes up and down it all day.

I was happy to note that I didn't run into one place that wasn't accessible. Each store or restaurant had a ramp or a portable ramp they put up - and offered it before I even had to ask. This definitely is an improvement since the last time I went there a few years ago.

The next time I go down there I'd like to try an early morning handcycle down the boardwalk (you can do that before 10 a.m.) Now that would be bliss!
[visual description: A photo of a wooden boardwalk in Atlantic City is shown with pedestrians.]

Do not pat my head- and other stereotypes

....are discussed by Kyle in this video entitled The Kid in the Wheelchair.

Largest Euthanasia and assisted suicide symposium...

..scheduled November 30 in Toronto .

"Nearly every leader and significant speaker on the issues of euthanasia and assisted suicide will be attending the International Symposium on Euthanasia "Current Issues and Future Directions" to be held Friday, Nov 30th, Saturday, Dec 1, 2007 at the Four Points Sheraton - Toronto Airport Hotel.

Organized by the Euthanasia Prevention Coalition - Canada and co-sponsored by: Co-Sponsored by: Euthanasia Prevention Coalition - Canada, NOT DEAD YET - USA, Compassionate Healthcare Network - Canada, Physicians for Compassionate Care - USA, Vermont Alliance for Ethical Healthcare - Vermont, Care NOT Killing Alliance - UK, No Less Human, UK."

Via lifesite.net

Speakers include Wesley Smith, Diane Coleman, Stephen Drake and Terri Schindler's brother Bobby. For more information, click above.

Grumpy groundhog lives under the handicap ramp...

...at a museum in Saginaw, Michigan.

"Tours at a 163-year-old home-turned-museum are sometimes disrupted by a grumpy groundhog. The furry critter's digging has foiled some of the Saginaw Valley Historic Preservation Society's attempts to refurbish the house on the city's east side.

"We put in a walkway, and part of that collapsed due to Grumpy's efforts," preservationist Thomas Mudd told The Saginaw News.

Construction workers leveled a mound of soil that Grumpy the Groundhog had settled into, "but Grumpy still has his hole under the handicap ramp," Mudd said.

Mudd's latest tactic is to use fox urine as a groundhog repellent. But other efforts have failed to rid the pest in the past. Mudd tried evicting Grumpy with ammonia and mothballs, but the animal dumped the offending materials outside of his tunnel."

via Forbes.com

I'm thinking the handicap ramp might be smellin' a bit odd these days....

[visual description: A photo of an even grumpier groundhog is shown, who is holding a machine gun.]

NCAA rules Ole Miss player with LD academically ineligible...

.. in part for receiving too much help. The decision is being appealed to the NCAA subcommittee on learning disabilities and his attorney is considering a possible appeal under the ADA.

"Powe, who has learning disabilities, has been working toward eligibility for two years. He signed with the Rebels in 2005, but the NCAA ruled he did not have the required core courses.

He signed again in 2006 after attending a prep school and taking correspondence courses, but the NCAA questioned whether he had received too much help while he attempted to qualify.

Powe's lawyer, Don Jackson, has argued that teachers never offered more help than is required by federal law and the NCAA is violating the Americans With Disabilities Act.

"Over the next 24 hours we'll plot out where we are," Jackson told ESPN The Magazine's Bruce Feldman on Tuesday. "We've had discussions with Ole Miss and they're preparing to file an appeal either late today or tomorrow, but at the same time we're having separate discussions internally about whether to file a lawsuit. That would depend on the timeliness of how quickly the NCAA responds to the appeal.

"We'll be prepared to file a lawsuit by tomorrow."

Via ESPN

Editor of Sports n Spokes and PN Magazine dies

Cliff Crase, who founded Sports n Spokes and was their editor (as well as the editor for PN Magazine) passed away on August 15.

"As editor and publisher of PN, Cliff raised the bar of reporting on subjects of interest to people with disabilities.

Cliff was in an auto accident just days before his 21st birthday and suffered a C6-7 cervical injury, resulting in quadriplegia. After just 14 months of rehabilitation, he enrolled at the University of Illinois, earning a degree in business administration in 1967. He resumed his athletic career, competing primarily in track and field and swimming, where he held the world record in the breaststroke from 1967-1969.

Cliff became a member of the U.S. Wheelchair Team, winning 33 national medals and 32 international medals. He claimed eight national titles and won 10 gold medals in international meets. He was inducted into the Upper Michigan Sports Hall of Fame, the National Wheelchair Athletic Association Hall of Fame, the National Wheelchair Basketball Association Hall of Fame, and Athletes with Disabilities Hall of Fame.

In 1988 Cliff was selected to receive the National Courage Award for his "significant contributions to the health, welfare and rehabilitation of individuals with disabilities." Via pva.org

As a wheelchair user and athlete, I've been an avid reader of Sports n' Spokes for years as are many of my friends. I can't even imagine what it took to start up the magazine back when there was nothing like it in print - that's an amazing effort in itself, but to keep at it for so many years and continue to produce quality and worthwhile material with a postive message says one thing: Cliff knew in his heart that all of us, by living life to the fullest, would produce the best material.

I can't think of a better tribute to him than to link to an article about a 20 year old bilateral amputee who plays and teaches wheelchair basketball to young kids. Her message?

""The biggest thing is to not feel sorry for yourself. There comes a point you have to realize this is your life and you need to make the best of it. You live life once, and just because you have a disability doesn't mean you're different than any other person," says Carlee Hoffman, 20, a member of the 2007 U.S. Paralympics Women's Wheelchair Basketball National Team."

Via Sports n Spokes magazine

To read more about Carlee, click above.

[visual description: Cliff is shown seated in his wheelchair wearing a tropical print shirt and holding a straw beach hat on his lap.]

Attention all doodlers!

If you like to doodle, have I found an online game for you! Line Rider, a free online game (click above), allows you to draw anything you want and an animated figure in a sled rides it.

Book review: If You Could See Me Now

This delightful book is currently in production for an upcoming movie, which I just discovered as I googled the title.

It's about a lonely boy whose difficult relationship with his aunt improves after they both begin to share an invisible friend. Family issues such as alcoholism and abandonment have led to skewed relations between the two, who have been thrust together after the boy's mother leaves him in his aunt's care. The appearance of Ivan, an invisible friend, slowly changes their ability to relate, breaking down barriers.

This whimsical book is actually narrated in part by Ivan, the invisible friend, who challenges the reader to question whether invisible friends are real - or not. Through the use of various characters' voices in the book, the author manages to draw the reader into a world that is simultaneously "unbelievable" - and very real.

I highly recommend this book for adults and older teens. This book is available on tape from the National Library for the Blind and Handicapped as RC 61534.

[visual description: The book cover is shown with the title If You Could See Me Now across the top and the author's name Cecelia Ahearn below . There is a drawing of a woman in a red dress (the body is shown from the waist down) walking through a field of flowers.]

Catholic church launches airline for pilgrims

The Vatican has launched an airline to carry pilgrims to destinations such as Lourdes and the Holy Land.

"The charter flights for pilgrims, which will eventually take passengers to the beloved shrines at Fatima, Jasna Gora, and Santiago de Compostela as well as Lourdes, are part of a 5-year agreement between Mistral Airlines, a small Italian carrier; and Opera Romana Pellegrinaggi, the office of the Rome diocese that provides support services for pilgrims. Eventually the program calls for pilgrimage flights to the Holy Land and to the shrine of Our Lady of Guadalupe in Mexico.

The flights will use small jets that have been refurbished with quotations from the Scriptures on the walls of the passenger compartment."

Via Catholic World News

I've also linked to an article in Fox News covering this story (click above).

Botched abortion raises eugenics issue in Italy

"Rome - A botched abortion in which a healthy twin foetus was terminated instead of its sibling with Down syndrome has reignited the abortion debate in Italy and raised allegations of eugenics.

....
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," she said, referring to the belief that the human species can be improved through selective reproduction.

The abortion was performed on a 38-year-old woman in Milan in June, but news of its outcome has only recently become public. Doctors blamed the mistake on movement of the foetuses between the examination and the abortion."

Via The Curt Jester

USA wins Little League world series

...and after the game, the USA team continued to show the kind of character we can all be proud of.

"No moment was crazier than the game-ending home run Dalton delivered, the first walk-off he has ever hit, he said. Before the at-bat, Dalton said he knelt in prayer for the strength "to just get a hit and help my team out."

He hit a 2-1 curveball over the right-field fence, his fourth home run in 16 World Series at-bats. He tore around the bases.

"My adrenaline was about to go crazy," Dalton said. "My legs were about to fall off. I really thought I was flying, like Peter Pan."

In the stands above, where parents, siblings and other supporters among the 31,400 in attendance had variously clasped their hands, anxiously twitched their legs and simply sat without a word, bedlam broke out.

High-fives. Sobbing. Hugs. Screaming. Pointing and waving at jubilant sons. Chants of "USA! USA!"

The Warner Robins coaches and players gathered on the mound with the Tokyo team, trying to console the Japanese boys who Lay said were the first of the 16 teams to greet his team when Warner Robins arrived in Williamsport two weeks ago.

"I don't believe we'll ever forget this moment," Lay said. "The sadness on their faces, the joy in ours. We're trying to let them know there's no shame in what happened today. They need to hold their heads high."

Via www.ajc.com

When the Japanese team began crying after losing the game, the USA team went over to hug their opponents. Now that's sportsmanship.

[visual description: Dalton Carriker runs the bases, his arms in the air, after hitting the winning homer in the series championship game.]

The patience of a flea

Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them - every day begin the task anew.
Saint Francis de Sales
French saint & bishop of Geneva (1567 - 1622)

My Irish grandmother had a bevy of colorful sayings which she shared with us while we were growing up. Whenever the four of us clamored for something to happen sooner, she'd turn to us and say "You have the patience of a flea."

I never was very patient, being a Type A. And I wouldn't say that when I acquired my disability, I automatically received the patience I needed to deal with being a quadriplegic. (Yet another myth about disability falls by the wayside.) I'm more patient than I was but there are days when I have a hectic time at work and fret over how long it takes me to do things. Waiting for help is part of the equation. That's not always easy.

However, I've made progress. A few years after becoming disabled, I ran across this quote from St. Francis de Sales about patience. I realized that my frustrations arose mostly from a lack of patience - a trait I always had - not necessarily from what was going on. I had a choice as to how to react to circumstances. And, more importantly, I realized that it was okay to be patient with myself - whether it was in dealing with my tendency toward impatience or the fact that my quadriplegia resulted in getting things done at a slower pace.

I've made some strides with this. I've learned to stop and pray when my impatience descends. And, hopefully, my courage to face these imperfections, as St. Francis says, will continue - and that courage, I know, comes from God.

Quadriplegic making a sandwich

I'm posting another video to show how someone with quadriplegia (Chris has a C5-6 level injury) makes a sandwich using assistive devices. The video runs just under ten minutes. It shows how Chris uses items like angled utensils and everyday items like mustard that comes in "squeeze" bottles to do this task.

(I could totally relate to his frustration when, about seven minutes into the video and sandwich-making, he dropped the plastic bag with the coldcuts in it onto the bread with the mustard- have those 'quad moments' myself.)

If you'd like to see more videos or learn about disabilities, click on the labels below.

From the Sea

a new short story over at A Different Light - a coming of age story about mortality

A is for Advocacy

One of the facts of living with a disability is having to make choices about when to assert your rights when you run into lack of acess. Once you make that decision, you then have to choose whether to enforce your rights under the ADA or through other means.

For years one of my friends relied on his sense of humor to handle things when a restaurant or business wasn't accessible. I recall him charming waitresses into making room for his wheelchair and spending a half hour after his dinner explaining to managers why an accessible bathroom would help their business grow. And then he began to start filing lawsuits. Somewhere over the years he concluded that it was necessary to enforce rights, not just convince people to follow the ADA in certain instances.

Through his efforts, no matter which approach he took, a number of businesses are now accessible. Others are benefitting from ramps, accessible bathrooms and other facilities. It's not as if someone hangs a sign on a curbcut one fights for with your name on it - but I'm sure anyone reading this who has been able to get an accessible accommodation made knows the feeling of satisfaction you get when you pass by it. I spent years quietly advocating for new curbcuts where I live. Not only were the curbcuts put in, but research was done to make sure that the safest and most up to date ones were installed as the project went on. This was all accomplished without having to resort to litigation.

It can be a tough choice as to which approach to take once you’ve decided you’re going to assert your rights. I prefer communicating with a business first before filing an ADA complaint to see if a reasonable accommodation can be worked out. Why? Because I’ve been able to negotiate much better results without litigating in many instances.

If you choose this approach, remember to set forth your side of the situation in a direct but respectful way. Try to be clear about what you're asking for. If the situation becomes emotional, be careful to avoid becoming too reactive. After all, your goal is to get access, not aggravated. If you feel baited, simply point out that your alternative is to file an ADA complaint Knowing this can help you negotiate more effectively.

But what do you do when you run into a tough cookie who won't negotiate with you? If any of the following occur, then you're probably not going to be able to settle things without filing an ADA complaint:

-You receive the 'brushoff' - this can range from a denial that the ADA even exists to the business denying that any other customers in wheelchairs (who are deaf, blind, etc.) had any problem
- Your attempts to communicate are ignored or you receive a runaround
-You're met with an unreasonable level of hostility (Don't expect any business/individual to be happy about having to make accommodations; however, civility is a reasonable expectation.)

I've met far too many disabled people who leave it up to others to remedy lack of access. Perhaps they think they lack the skills to handle it. But often, with the right approach, simply letting a business owner know what you need results in a solution. And nothing feels more empowering than self advocacy.

Hofstra mourns the loss of Dr. Frank Bowe

Dr. Bowe was a distinguished professor and disability advocate. He passed away on August 21.

"His latest study, released in September 2006, revealed that Americans with disabilities – the nation’s third largest minority – are the least likely of any population within the country to achieve the American dream. Dr. Bowe reported that more than a quarter of this demographic live in poverty (75% earn less than $20,000 annually) and fewer than half have private health insurance. His research found that many adults with disabilities subsist on Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), and although the monthly funds received from those programs provide barely livable wages, the benefit of Medicare and/or Medicaid is something this population cannot do without.

Dr. Bowe also examined education in this study and found that despite measures to level the playing field, educational opportunity for students with disabilities and those without is not parallel. While the typical 9-year-old would be in the 4th grade, a 9-year-old student with disabilities is more than half likely (61%) to be in the third grade. Among high school students, the vast majority of 15-year-old students with disabilities are not with their same age peers in the 10th grade but in 9th or 8th grades." Via Hofstra University web site

A link to Dr. Bowe's site, including his writings and work, can be clicked on the heading of this post.

[visual description: A photo of Professor Bowe is shown. He is wearing a gray suit with a checkered tie.]

Back to school: teaching children about disability

As the school year approaches, I keep getting emails from my nephew. At the bottom of each email is a P.S. - I can't wait to start middle school!

I couldn't ask for a greater gift because my nephew, who has CP, didn't always feel that way about school. In fact, at a young age, he's faced inclusion issues. Fortunately he's in a wonderful school district that attends to his needs and promotes inclusion.

One of the needs the school recognized is that children with disabilities need friends, not just helpers. This concept is basic but crucial. There is a vast difference between using the proximity of mainstreaming to create helpers or encourage friendships.

Helpers are created when teachers or staff ask kids to assist a disabled classmate. This creates a relationship in which the child who is disabled is seen in a very different way than as one of a group of kids who may be a potential friend. In fact, it can prevent friendships from forming if the role of helper is pushed too much by staff or teachers. Turning classmates into helpers can, in certain instances, objectify the student with a disability. It can also reinforce negative myths about disabled people, teaching children that their relationships with disabled people are unidimensional and consist of "helping" them.

This robs everyone of full inclusion. In an inclusive setting, staff anticipates practical issues related to access and other needs of all students and promotes relationships between the children so that the disabled student has opportunities to make friendships on a more equal basis.

This will often include education about disability or awareness classes for able bodied students as well as providing for the accommodations needed for disabled students. Staff can do follow through with students by attending to question, issues and concerns as they arise during the course of the school year.

By providing the tools all students need, the groundwork is laid for friendships to form, rather than mere helping relationships, between students. In my experience with my nephew, one friend is worth dozens of helpers.

Home health care aides sold illegal certificates in NY

"Attorney General Andrew M. Cuomo announced guilty pleas on Thursday from the former operators of two schools for home health aides who sold state certifications to hundreds of people who never received proper training."
Via NY Times

The schools were described as "certification mills" in the article that sold the certificates for about three or four hundred dollars.

Mother Teresa's Crisis of Faith

Time magazine explores a new book about Mother Teresa in this article.

Jesus has a very special love for you. As for me, the silence and the emptiness is so great that I look and do not see, listen and do not hear.
— Mother Teresa to the Rev. Michael Van Der Peet, September 1979

The book, using letters written by her, documents her spiritual crisis, which apparently began at the time she started tending to the poor and sick and continued throughout the years.

"Come Be My Light is that rare thing, a posthumous autobiography that could cause a wholesale reconsideration of a major public figure — one way or another. It raises questions about God and faith, the engine behind great achievement, and the persistence of love, divine and human. That it does so not in any organized, intentional form but as a hodgepodge of desperate notes not intended for daylight should leave readers only more convinced that it is authentic — and that they are, somewhat shockingly, touching the true inner life of a modern saint.
..
The Rev. Matthew Lamb, chairman of the theology department at the conservative Ave Maria University in Florida, thinks Come Be My Light will eventually rank with St. Augustine's Confessions and Thomas Merton's The Seven Storey Mountain as an autobiography of spiritual ascent. Martin of America, a much more liberal institution, calls the book "a new ministry for Mother Teresa, a written ministry of her interior life," and says, "It may be remembered as just as important as her ministry to the poor. It would be a ministry to people who had experienced some doubt, some absence of God in their lives. And you know who that is? Everybody. Atheists, doubters, seekers, believers, everyone."
Via Time Magazine

Click above to read the rest of the article.

The Hokey Pokey

a new short story over at A Different Light.

The Disability Blog Carnival is Up!

One of my favorite bloggers, David over at Growing Up with a Disability, is hosting this one and he did an awesome job. The topic is Top Ten Lists and the posts range from the sublime to a delightful belly laugh that'll do your heart good. As David says "Move over David Letterman-" and don't miss the wonderful graphics he put up from The Nth Degree.

Go on over and join the crowd - and, by the way, remember that if you have a disability blog you can submit your own post to a carnival via the links provided - they always list the next host of the carnival. If you have any more questions, feel free to ask - the more, the merrier!

[Descriptions of picture: Carnival Logo: A guy with a rather absent look in his eyes has a wheelchair ramp switchbacking up to his head. He is wearing a black hat which is flipped open and several people (one in a wheelchair, one with a cane) are falling into his head. Dan Wilkins' title is Ramp Minds. "Ramp your mind at the Disability Blog Carnival" is added across the ramp.]

Vermont trails become wheelchair accessible

I've covered the topic of accessible trails before and am delighted to report there are more accessible trails now -in Vermont. And the National Park Service will be listing accessible trails, programs and other sites on their web page starting in September to make them easier to find.

In Vemont the accessible trails are:

"-Camel's Hump View Trail, Camel's Hump State Park, Duxbury. Take Exit 10 from Interstate 89; turn south on Vermont Route 100 toward downtown Waterbury, and left where Route 100 joins U.S. Route 2. Go about .1 miles toward Waterbury village, take a right on Winooski Street. Cross a bridge over the Winooski River and turn right. Go 4 miles, with the Winooski River on your right much of the way. Go left on Camel's Hump Road. About 3.4 miles (watch for the small Camel's Hump sign where the road hooks left). At 3.4 miles, take left over single-lane bridge. Follow road to parking area at the trailhead. Both ends of the .8-mile looping trail end at this parking area. Admission is free.

-Baldwin Trail, Mount Independence Historic Site, Orwell. It's located near the end of Mount Independence Road, six miles west of the intersection of Vermont Routes 73 and 22A in Orwell. Carefully follow the signs. Admission to this Revolutionary War historic site is $5 for adults and free for kids under 15.

-Thundering Falls Trail, Killington. This wheelchair-accessible section of the Maine-to-Georgia Appalachian Trail is expected to be open in the fall, when the Green Mountain Club completes construction of a boardwalk through the Ottauquechee River flood plain. The public is asked to wait for construction to be complete before visiting.

NATIONAL PARK SERVICE: http://www.nps.gov. A Web site will be launched in September listing accessible trails, programs and other accessible sites throughout the national parks system. In the mean time, most national parks have some accessible facilities; check with individual parks for details.

...The National Park Service program will be launched in September, according to Gerry Gaumer, spokesman for the agency. The objective, he said, "is to put all the information on one website, where people can access not only trails but also other programs that are accessible," such as museum exhibits, camp sites and visitors centers. Gaumer said most national parks have some accessible facilities, but the information has never been compiled in one place before. (The Web link for the program will be made public in September.)"

Via USA Today

Click above for the rest of the article.

Batter Up! We only have 29 runs...

And the record has been set - the biggest loss in baseball just happened when the Texas Rangers beat the Baltimore Orioles 30-3. The headline calls it a rout. You can hear the screams - or silence - from the locker room all the way up the East coast.

I wasn't a baseball fan at all until some of my wheelchair tennis friends kept putting Phillies games on when we traveled. I was, so to speak, a captive audience. I'd tell them there was a great movie on HBO and they'd look at each other and say "Game's on!" I was appalled. How could you turn down free HBO for a ball game that was not only free all of the time but not something I'd watch? All they did was toss a ball and, most of the time, miss it. Then there was the occasional shot to the dugout where who knows what who would be doing - scratching something or other or spitting. Yuck.

But, after watching a number of games in hotel rooms with my friends, I learned there's a flow to baseball. And, more importantly, there's a social aspect to watching it. You have the slow innings during which you can regroup - refill the chip basket, get another beverage. Then you have innings where the action never stops - not the time to ask three wheelchairs to get out of the way of the bathroom door. The game begins to take on a character to it.

If the teams are off, maybe it's okay to start a card game. Then you can watch the game out of the corner of your eye. It's like being in the dugout - you want to do something else but you have to watch. You're obliged to. You talk about the players. The sports announcers give you interesting tidbits and you comment on them. By the time you're at the seventh inning stretch you really do want to - stretch - in some games.

This is what being a true baseball fan is about. You don't choose to watch the game. You just do. You take it as it is, whether it's a one run game or a 30 run game. Whether your team loses or wins.

And, in my case, whether you initially like baseball or not. Because now, somehow, I too am a baseball fan.

And if you're interested it's been 110 years since a team scored 30 runs in a game. After this game, the Rangers had to play the second game of a doubleheader. Now that's baseball.

[visual description: A red baseball cap with a white letter P on the front is shown - of my team, the Phillies.]

Young Iraqi war victim needs surgery

Five year old Youssif was burned on his face and hands when masked men came up to him, threw gasoline over him and set him afire months ago. He was left with scars on his face and hands, but his family cannot afford the surgery he needs.

Youssif has become angry and withdrawn. Neighborhood children exclude him from play. His mother reports that he has become "spiteful" "sensitive" and jealous of his little sister. Youssif recalls the senseless and violent attack fully.

His scarring causes other problems.

"Even things like eating have become a chore. His face contorts when he tries to shovel rice into his mouth, carefully angling the spoon and then using his fingers to push the little grains through lips he can no longer fully open."

I'm posting this in hopes that someone with an organization that can help will see it- spreading the word always helps. And, if you would, prayers for this family would also help.

UPDATE: The Children's Burn Foundation , a nonprofit organization in the US, has generously offered to fund all the medical costs of Youssif's treatment. His family will need help with other costs, including transportation and lodging since his treatments will extend most likely over a year. Donations can be made at the Children's Burn Foundation's website at www.childburn.org

There are others like Youssif who are suffering from the effects of the war - loss of an education. Some parents are keeping children confined to their homes due to the violence.

If you'd like to help our troops help Iraqi children, please visit Operation Iraqi children.

[visual description: Two soldiers, one male and one female, hold OIC school packets for distribution. Actor Gary Sinise, who is a co-founder of the organization, stands between them.]

Paragliding in a wheelchair

This video shows Greg Smith, a wheelchair user, paragliding - from a wheelchair.

Autistic resident of LI group home beaten

Just turned on CNN's Nancy Grace show and Lawrence Carter-Long, a disability advocate, is on her panel discussing this case. Hidden cameras caught several caregivers beating a 50 year old resident with objects including a shoe and a wooden coat hanger.

"The helpless 50-year-old victim was battered repeatedly at the PLUS Group Home Inc. by at least four employees after one of their co-workers alerted police to possible mistreatment of the residents inside the Uniondale facility, police said.
...
According to police, there were four separate assaults.
In the first incident, one of the suspects still at large was captured striking the victim in the head with her hand several times on Aug. 9. Three days later, the second wanted suspect kicked the woman in her buttocks, smashed her in the head with a wooden coat hanger and then threw the hanger at the woman's head.
That same day, health care aide Gedeon used a shoe to batter the victim, hitting her in the head. Djhon-Felix, another aide, used a handful of the woman's hair to shake her back and forth during the last incident Thursday.
Authorities said the victim can not speak or convey emotions or pain because of her disease, which is characterized by impaired social interaction."

I've linked to the article above from Newsday.

Legal bid to subject disabled woman to euthanasia in Wisconsin dropped

"In a surprise move, attorneys representing a La Crosse family asked a judge for a dismissal of their motion to remove a feeding tube from a woman who is not terminally ill and not dying. Their original request invited legal action from pro-life groups interest in helping the woman not be subject to euthanasia.
...
"The La Crosse case was being set up as a test case to change state law via the courts to allow the removal of food and water from many vulnerable patients," Lyons explained. "We empathize with the family of the woman in question as they struggle through this difficult time. Our prayers are with them."
...
Marilyn, who is in her 50s, has had several strokes and has dementia. However, she is believed not to be terminally ill and is not dying, the pro-life group told LifeNews.com.
She is currently a patient at Gundersen Lutheran Medical Center where she is being kept under sedation and is fed through the use of a feeding tube.
Marilyn has left no advance directive or instructions or otherwise indicated her wishes with respect to the withdrawal of life-preserving nutrition and hydration. That's what led to the legal dispute between Terri's family and her formal husband, who eventually won the right to have her killed."

Via Lifenews.com

Top Ten Songs Adapted for a Disability Revue

The theme for this disability carnival is Top Ten lists, so here's my version of songs for a disability revue:

10. I Left My Crutch in San Francisco
9. Ramp Over Troubled Water
8. Ain't No Curbcut High Enough
7. You Are the Guide Dog of my Life
6. Someone Left the Power Chair Out in the Rain (McArthur's Park)
5. Goodbye Yellow Brick Nonaccessible Road
4. How Can You Mend a Broken Catheter?
3. Quads Just Want to Have Fun
2. Pump Up the Jam – Pump Up the Tires
and last but not least
1.Do You Know the Way to the Handicapped Restroom?

Parenting and Disability - a father's view

Julian Regehr, whose daughter has Down Syndrome, shares his experiences and thoughts in the article linked to above. It's part of his website that contains helpful links and information for other parents of children with disabilities.

He writes :

"In my own journey I am coming to the point where I make an extra effort not to match my child's growth against that of other children. If she can't sit up today and can sit up tomorrow, that is a huge achievement. Whether or not her peers have been sitting up for months is irrelevant. I need to learn not to measure her against a standard that is designed to highlight her short comings. As she grows I will have to continue to make that effort. Why should I push her to be involved in soccer if she doesn't like soccer. If she wants to work as a dishwasher at a restaurant why should I push her to become a secretary. If she wants to be a secretary why should I hope for her to become a business woman. If she wants to be a business woman, why hope for a presidency. When I do these things, it is most often because I am unwilling to let her measure herself against her own standard. I am succumbing to the standard of a society which prizes certain achievements over others. I am succumbing to a society which talks about acceptance and inclusion but requires that acceptance and inclusion happen on their terms, using their points of reference."

This article is worth a read - for everyone, whether you are parenting a disabled child or not.

Fetch cat fetch!

I've seen several people express surprise at the fact that my cat Buddy fetches objects - and brings them to me. However, I've had several cats who fetch - all different breeds, sizes and shapes. Their favorite is aluminum foil balls since they're fun to chase and easy to carry. I had one cat who used to love it when I tossed balls down the staircase. She would carry them up the stairs back to me and chase them down for hours.

Buddy, however, is particularly enthusiastic when balls are tossed around corners. He likes to do burn outs - take off and slide around the corner - all 20 odd pounds of him. It reminds me of a cartoon kitty, like Tom and Jerry and I half expect a bubble to float over his head with the words "Got it!" Sometimes I hear a crash and wonder if I should get him a helmet.

And then, suddenly, it will get very quiet. When I check, I see Buddy crashed out, laying on his back sleeping, one paw on the aluminum foil ball.

Awww.

Peter Apps - back to work with a disability

In his article, Apps writes about the changes in his life as a result of acquiring a disability - and how the system and people around him have responded. He has returned to work for ReutersAlert in its London office

He writes:

"There was the unwelcome, if not surprising, realisation that the damage done to my spinal cord when our vehicle slammed into the tractor was too bad for me to recover use of my limbs, leaving me needing everything to be done for me by carers.

That costs money I cannot afford. I was rendered dependent on a British welfare state already openly struggling with limited resources and an ageing population.

...

By and large people are tolerant of the inconveniences I pose. They have got used to wheeling me about, feeding me beer through a straw, and are less phased by the violent spasms that twist my wrists sideways and throw my legs up from the chair.

There are huge restrictions. It takes two people to get me up and put me to bed. If I had two full-time carers, I could do as I chose but with only one I am tied to when a second person comes in. Being home for bed at ten limits my social life. "

Via thestar.com

Click above to read the rest of the article.

In Prayer, Never Let Go

In this recent post from Sr. Edith over at Monastic Musings, she writes about St. Jeanne Francoise de Chantal, who offered this advice about praying:

""If you are told, as was the Canaanite woman, that you do not deserve the grace for which you are asking, then reply like her that you are not asking unusual favors, but are hoping only to eat the crumbs which fall from the divine table."

I wanted to share this over here because I receive so many emails from readers who are feeling discouraged by what they're going through and experience a 'dark night of the soul', where it becomes difficult to keep praying. Please click above to go read this very special post.

Medicare refuses to pay for hospital errors

In a radical rule change to be announced next week, Medicare plans to stop paying for treating reasonably preventable conditions that occur on its patients. The rules forbid passing the payment on to a patient as well. It is being hailed as an advance toward better patient care, with Medicare using its clout to encourage better medical oversight.

"Under the new rules, to be published next week, Medicare will not pay hospitals for the costs of treating certain “conditions that could reasonably have been prevented.”

Among the conditions that will be affected are bedsores, or pressure ulcers; injuries caused by falls; and infections resulting from the prolonged use of catheters in blood vessels or the bladder.

In addition, Medicare says it will not pay for the treatment of “serious preventable events” like leaving a sponge or other object in a patient during surgery and providing a patient with incompatible blood or blood products."

Via NY Times

Forget the election debates, let's have a contest

I'm thinking a reality show would be better.

How about this - we give each candidate a pressing social issue to work on over the next three months and see what approach he/she takes, what plans he/she makes, how resourceful he/she is based on present resources in taking action and how he/she remains accountable with feedback on progress?

The winner - well I can't promise a trip to the White House but I bet more people would watch it than the debates. And I promise to spare you Simon Cowell.

Four Dimensional

a new short story via A Different Light

Film Review : Touching Wild Horses

I rented this film from Netflix. It's a 2002 movie starring Jane Seymour, who plays a prickly woman (Fiona) living alone on an island off Nova Scotia studying wild horses. When her brother in law and niece are killed in a car accident and her sister left in a coma, she reluctantly takes in her nephew Mark who is suffering from post traumatic stress disorder -both from the accident and also from abuse. It becomes clear as the movie progresses that Fiona is hiding her own secret from a hidden past.

The movie sensitively portrays the characters' influence on each other and the emotional healing of the young boy as Fiona helps him regain not only his self esteem but provides him with safety and structure. It contains beautiful footage of the wild horses, the acting is superb and, although the screenplay wasn't as good as the acting, it did justice to the characters, providing a realistic portrayal.

For more information about this movie, click above.

[visual description: Young Mark is shown standing next to one of the wild horses, a black foal.]

1599 Geneva Bible available for first time in almost 400 years

Used by the settlers in Jamestown, the Geneva Bible has great historical significance.

"It was the first English Bible fully translated from the original languages. It was the first study Bible; [it] has over 300,000 notes and cross references. It was the first Bible to use chapters and verse numbers," says Vallorani. "It was portable and inexpensive. And it was ... used by Shakespeare and John Bunyan, and influenced America and the founding of America as we know it today."

According to Vallorani, the Geneva Bible played a key role in the Reformation." Via onenewsnow.com

Assistive Technology Reviews- NEW

Greg from Pitt Rehab is doing a series of reviews on assistive technology at the above link (just click above). He asked me to do a guest review on my SmartNAV 3 head cursor and there are reviews on a number of devices - including a remote controlled deadbolt door device and microphone for voice recognition.

Spread the word online so that folks can benefit from this resource!

God's Warriors, Pt I

Here's a link to the series on CNN that begins showing next week - one man's experience with radical Islam led him to the FBI.

In the series CNN's Christiane Amanpour examines the effects of Judaism, Islam and Christianity as a powerful political force around the world.

Watch Tuesday through Thursday, Aug. 21-23, at 9 p.m. ET

The Power Chair Pole Vaulter from Paluga County

a new short story over at A Different Light

Synopsis: When junior reporter Ace McConroy is sent to interview a power chair pole vaulter for the Sunday magazine inspirational column, he's in for a fall to earth....

[visual description: A cartoon of a young boy holding onto a pole and pole vaulting is shown. ]

10 Free Good Computer Games...

Via Dappled Things, thanks Fr. Tucker!

ElectroDude - this post is for you and all the other "kids" having end of summer "boredom blues"...enjoy!

Fortuitous! Fortuitous!

" In its best-established sense, fortuitous means "happening by accident or chance." Thus, a fortuitous meeting may have either fortunate or unfortunate consequences. For decades, however, the word has often been used in reference to happy accidents, as in The company's profits were enhanced as the result of a fortuitous drop in the cost of paper. This use may have arisen because fortuitous resembles both fortunate and felicitous."
via dictionary.com

I've used this word a lot in my life. I think perhaps I've misused it as well. Apparently its use has developed over time to not only mean "happening by accident or chance" to "happy accidents". I generally use it in the latter sense myself by exclaiming gratefully "How fortuitous!" when someone happens by at a great time or when circumstances and chance combine to create great opportunities.

I'm generally open to seeing - and naming - fortuitous events, such as meetings. Haven't you experienced running into an old friend and spontaneously going to get a cup of coffee? Isn't it wonderful to have a change of pace just land in your lap like that? What about when the "six degrees of separation" thing happens - and the person you call or meet knows so and so whom you know?

I've heard many people allude to the former meaning of fortuitous, when speaking of my disability. It really floors them when I go on to say that my life has been enhanced as the result of a fortuitous accident and by the experience of living with a disability.

The word fortuitous has a funky history. The consequences can go either way. It reminds me that being grateful for the happy consequences sure beats dwelling on the unhappy ones, no matter whether my usage of the word is completely accurate - or not.

But all in all I'm kind of glad that the word fortuitous has evolved toward a more fortunate meaning. Because it's a lot of fun to say it.

Catholic Carnival : Back to School edition

...is up here.

Sarah writes:

"It’s not that I don’t want to commemorate the Feast of the Assumption with this edition of the Carnival, it’s that I’m just stuck on the world around me and not on heaven. I hope you, and our Blessed Mother, can forgive me and indulge me this week as we explore, through the lens of this week’s collection of posts, just what this time of year brings our way, in addition to a fabulous opportunity to pay homage to Our Mother Mary.

Though I’m not going back to school, everyone around me is. "

Bishop proposes we call God Allah

A Dutch Roman Catholic Bishop has proposed that we call God Allah in order to ease tensions between the West and Muslims. His suggestion has resulted in public outcry against it.

Wired wheels

Because the power chair I bought on ebay is a Jazzy, I've checked out the message boards over at their site for owners. Luckily they're pretty liberal about allowing you to participate if you buy used equipment which says a lot for them in several ways. One thing it shows is that their euipment lasts well enough that folks can buy it second hand and the other is that they follow up with technical/service advice. Kudos to them on that!

One of the things I noticed over there is how people discuss how they rig up their power chairs. One guy did a Harley theme complete with their packs and decals. Others repaint their shrouds in various colors and patterns. Many accessorize and share those ideas.

But what intrigues me as a high tech wannabe is when they talk about wiring up their chairs - using the batteries as a power source, for example, for a cell phone or other device. (As to a cell phone, the question was asked 'How many calls do you make that you need to power it up that way?") But be that as it may, there is the 'cool factor'. I could see me wiring up a laptop.

Months ago I saw a device that was designed for power chair users and posted about it. It was a central hub of electronic devices but it was contained in a shield (called the Gryphon Shield). That didn't appeal to me since I don't even like using a wheelchair tray. I'm more interested in an open space design.

I have no plans to wire my wheels. My pride technician indicated that my ebay chair is quite old - a senior citizen it seems. So I'm not going to put any extra strain on it except to have it take me around my house. However, that doesn't stop me from occasionally rolling around with my laptop - unplugged -and being a 'wired wheels wannabe'.

NY Times on Alzheimers

..and how cases of dementia will be increasing.

".. the numbers are staggering: 4.5 million people in the United States have Alzheimer’s, 1 in 10 over 65 and nearly half of those over 85. Taking care of them costs $100 billion a year, and the number of patients is expected to reach 11 million to 16 million by 2050. Experts say the disease will swamp the health system.

It’s already swamping millions of families, who suffer the anguish of seeing a loved one’s mind and personality disintegrate, and who struggle with caregiving and try to postpone the wrenching decision about whether they can keep the patient at home as helplessness increases, incontinence sets in and things are only going to get worse.
....
It is telling, maybe a tacit admission of defeat, that a caregiving industry has sprung up around Alzheimer’s. Books, conferences and Web sites abound — how to deal with the anger, the wandering, the sleeping all day and staying up all night, the person who asks the same question 15 times in 15 minutes, wants to wear the same blouse every day and no longer recognizes her own children or knows what a toilet is for."

Via NY TImes

In my caregiving post yesterday, I received several comments from those who deal with the caregiving industry in this area - with very different points of view. You can read the post by scrolling down.

Sensational headlines

I just read a news story where a Japanese man hit a road barrier, severing one of his legs and continued on driving his motorbike, not realizing that his leg was gone. He reported excruciating pain and his friend, who was behind him, picked up his leg. The man, undoubtedly, was in medical shock.

I've seen a spate of stories in the news with a disability theme that fall under the heading of "odd" or "curious" news stories in major news services. Often they play on sensational facts like this one. It's reminiscent of the old carnival freak shows where people paid to stare at "human oddities" and could satisfy their curiosity for a nickel.

But I often think of other things when I read stories like this. I wonder how the guy is going to feel when he realizes that his accident has become a sensationalized major news story.

The headline in CNN reads "Biker fails to notice missing leg". Will he feel objectified? Embarrassed? Ridiculed? Will he blame himself for this? How will this affect his recovery?

I know. I'd be a terrible reporter. But at what price do we sensationalize the accidental amputation of someone's leg with gripping headlines? Because, bottom line, that's what happened here. He had an accident that severed his leg. It couldn't be reattached because his leg was too damaged.

Is it boring to look at it that way? It's certainly less sensational. But, then again, although I don't think having a disability is a tragedy, I certainly don't feel it should be a source of entertainment in the media either.

Doctor says society's view of elderly as burden adds to stress of caregivers

There is a move to label caregiver stress as a syndrome under DSM IV, but one doctor states that he opposes it since caregiver stress results from the way society views caregiving as a burden.

"Vitaliano isn't sure giving caregiver syndrome the status of an official diagnosis would be a good thing. He argues that if "caregiver syndrome" were listed in the Diagnostic and Statistical Manual of Mental Disorders (a text published by the American Psychiatric Association that defines all mental health disorders) it could stigmatize those that have it. "Caregiver stress is directly related to the way our society views the elderly and the people who care for them,"Vitaliano says. Today, caregiving is viewed largely as a burden in this county. If it were viewed as more of a societal expectation and people were willing to offer more support, fewer caregivers would suffer in isolation, he says.

Others think giving caregiver syndrome an official name would be helpful. Kathryn Anderson, a researcher in families and chronic illness at Florida International University, argues that caregiver stress should be named a syndrome because it would help caregivers seek the help and resources they need. Naming it a syndrome would encourage health professionals to develop better treatment strategies and require health insurers to pay for treatment, she believes." via CNN

One of the key things said here is about the isolation of caregiving that often results from a lack of support from the community. Not only does it cause isolation for the caregiver but for the person who is the recipient of care.

I recall talking to several caregiver groups, where the major concern was how a daughter of an elderly person was suffering burn out. When I'd ask if she had siblings, invariably she'd smile and reply "Yes, but they don't help mother. She's my burden." I'd also discover after asking questions that she wasn't receiving any help from local agencies or friends.

I asked her if her elderly mom had any friends who were able to get around and she looked at me quizzically but said yes. "Call them, invite them over," I urged her.

I received a call within a few months from the woman who told me that two of her mother's friends were now helping out and it had made an enormous difference in the situation. Not only was she getting assistance in caring for her mother's physical needs, but her mother was much happier and less isolated too.

"I never realized what good friends my mom had - or what a good friend she has been to others," she admitted.

This wouldn't have been possible as long as the woman continued to see her mom as a burden.

Reading books - on your cellphone?

This article in the NY Times discusses software - and devices - you can use to read ebooks, whether it's on the fly or because you have a disability. Depending on the device, some people with disabilities can benefits from ebooks and ebook readers - although I think software on your computer is probably easier to navigate.

One ebook reader who uses his cellphone stated:

"Once you get use to having books with you, you get use to reading in places where it never occurred to you. If I’m waiting in line at the supermarket counter, why not read one of my science fiction magazines?” he said. “Believe it or not, I’ll sit down in my chair at home, pull out my phone and read a book.”

The Sony Reader, a book-shaped electronic device that displays easy-to-read print, is not the only machine well suited for reading electronic books. Many cellphones and personal digital assistants have screens with a resolution fine enough to rival that of the printed page." Via NY Times

And don't forget the iPod as a digital book reader!

The article gives links to onlline stores where you can purchase ebooks and to ebook reader programs - so click above and enjoy!

Using a power chair is a roll on the beach?

This weekend I was sitting in my power chair struggling a bit with the whole idea of using a power chair when I headed over to read The Rolling Rains Report by Dr. Scott Rains. Scott had a post up about a Hot Shot power beach chair on a California beach with a photo of the chair - and I felt this huge smile cross my face. ( So, thanks Scott. You made my day.)

Unlike beach wheelchairs I've seen, these are power chairs and can be operated independently by the user. Not only do these balloon wheeled power chairs provide access to the beach, they look like great fun! And the Hotshot Power beach chairs can be found:

"The power beach chairs are stored in a locker at the City of Imperial Beach Lifeguard Headquarters at Dempsey Holder Safety Center, convenient to the City’s beach front plaza, parking and pier. Lifeguards will check out chairs to users by reservation and at no charge to users."

So if you live in the San Diego area, check these out! (Click above to visit The Rolling Rains Report and to read more about it.)

ADA Restoration Act of 2007 blog

I've blogged before about the ADA Restoration Act of 2007 - but this morning I found this gem - a blog about the Act.

In addition to defining disability and the purposes of the ADA, the following amendments would be added under the Act:

"Section 2(a) of the Americans with Disabilities Act of 1990 (42 U.S.C. 12101) is amended--
(1) by amending paragraph (1) to read as follows:
`(1) physical or mental disabilities are natural parts of the human experience that in no way diminish a person's right to fully participate in all aspects of society, yet people with physical or mental disabilities having the talent, skills, abilities, and desires to participate in society frequently are precluded from doing so because of discrimination; others who have a record of a disability or are regarded as having a disability also have been subjected to discrimination;'.
(2) by amending paragraph (7) to read as follows:
`(7) individuals with disabilities have been subject to a history of purposeful unequal treatment, have had restrictions and limitations imposed upon them because of their disabilities, and have been relegated to positions of political powerlessness in society; classifications and selection criteria that exclude persons with disabilities should be strongly disfavored, subjected to skeptical and meticulous examination, and permitted only for highly compelling reasons, and never on the basis of prejudice, ignorance, myths, irrational fears, or stereotypes about disability;'.

The blog states that as of August 6, 2007:

"And the grand total is..... 181 cosponsors on H.R. 3195 as of the start of the Congressional recess!!! Great job for sure!!! But we cannot let up during the recess! We're still 37 shy of the 218 we'll need for a majority vote. "

In the Senate there are 2 co sponsors.

I encourage you to click above, go on over and read (or listen, there's a podcast) about this important legislation.

The love of Christ impels us

"The Diocese of Iquique (Chile) will hold a Social Week August 11-18 in order to train “volunteers in each one of the organizations that are part of our social ministry.” The diocesan director of social ministry, Marcos Rojas, said, “Whoever feels the love of the Lord who saves us spring up in his heart, cannot remain unconcerned without responding.”
Via Catholic News Service

What a compelling phrase that calls us as Christians to action- the love of Christ impels us! Sometimes I think we forget what an Abundance the Holy Trinity provides us - Father, Son and Holy Spirit.

Not only have we seen Christ made man and seen God's love here on earth, but we have the Holy Spirit to guide us as we respond to the needs of those around us, both near and far. Some might respond to the plight of those in third world countries who need basic necessities - whether it's through sharing material goods and money or traveling overseas to give hands on help through organizations. Others respond to poverty or disaster here at home, such as Katrina. Others respond to those in their community.

One of the highest priorities in my life is to keep an open ear toward those who go unheard. Since I am in the disability community often I respond to people there. One thing I've learned is that I can't fully explain to others why, where or how the love of Christ impels me. Nor, do I think, He would want me to.

And what about all of those people who have acted upon the love of Christ to help me? I'd be here all day making a list! How could I choose not to respond after all the Love that's been shown to me in my life? When I read the Bible I often wonder if the lives of those who are touched by Christ can truly be explained in words because, to me, it seems that I often go straight toward prayer as I read about them. There seems to be a mystical connection in the very experience of reading the words which is far beyond my ability to understand or explain.

And, yes, I do think that the love of Christ impels me toward prayer as well. Prayer is another way to respond to the needs of others - and can accomplish much that I cannot in other ways.

[visual description: Two cherubs look skyward as one says 'I know guardian angels work overtime but I thought I'd at least get Sundays off."]

Never try to sell cleaning solution to a quad

So I answer the door.

"Hello," she says, holding up a bottle of Biogeneric environmentally correct solution, "I'm selling cleaning solution."

"Sorry, I don't use it," I reply.

She tries to hand me a flyer.

"Can't hold that," I say. "My hands are paralyzed."

"Both?"

I look down. "Yup." Figured I'd check, just to see if there'd been a change. "Look, I don't clean."

"Well," she says, putting on a chipper look, "someone must clean FOR you, so wouldn't they want a bottle of this?"

I think of Meredith and can hear her say "You only bought this because you felt sorry for the person, right?" and I reply "No, not really. I don't have any use for it. But I do have cold bottled water - would you like one?"

"Oh yes," she says. She looks frazzled, hot and very tired. So I bring her a bottled water in the crook of my elbow and she watches my every move. (Looking back, I think she was considering if she could convince me I could hold a mop that way and clean and then I would need cleaning solution.)

But she just said "What's your name?" and I told her. Then she said "Thank you, Ruth."

So I suppose, in a way,I wound up giving her a break from being treated like a door to door saleswoman rather than a person. And I realized, after she left, that perhaps that's one of the reasons why I offer people cold water in the heat.

Connect-Ability

Connect-ability is a job program in Connecticut that brings employers and disabled employees together. Their organization emphasizes seeing the ability. This video shows how James, a paraplegic, adapted a dump truck for his livelihood.

To visit their site, click above.

The resistance continues...

To the power chair. Those of you who read my blog know that I'm supposed to be using a power chair for my bilateral shoulder injury. So I ebayed, got one and the batteries promptly died.

After much procrastination I turned over the job of getting new batteries for my power chair to Meredith realizing that, left up to me, the task wouldn't happen any time soon. So she called, made the arrangements and yesterday new batteries were installed and the chair is back in use. (I shouldn't have picked her - she's way too efficient!)

Physically I felt immediate relief. I'm not particularly thrilled, wheelchair jock that I am, having to use a power chair. All I can think of is what it's doing to my muscles - whatever muscles I have left that I tried to keep pumped. On the other hand, being out of pain and being able to sleep and eat is rather nice.

But my cat Buddy is a mess. I mean it. He's clinging to me, hissing at me, standing in my way, and otherwise protesting my move to a power chair. This morning he tossed his cookies in the early morning hours - right in my bed. I think Buddy is having an 'adjustment reaction'. Maybe they need to do a study on pets' reactions to owners' equipment changes. If any pet therapist is interested, feel free to come work with Buddy. He could use all the help you can give.

The good thing for me is it distracts me from how I feel about it. RIght now he's clinging to my left leg, meowing like he used to do when he was a kitten. In fact, he wanders off for about a half hour, then returns and jumps into my lap for petting and reassurance, then goes away again. I'm wondering if he saw my manual wheelchair as part of me - and just thinks something is wrong - or if he's responding to the fact that I move around differently.

One friend told me he's picking up on my emotional cues and added "Poor Buddy. You really need to think of his feelings right now." Great. Should I feel guilty for hating the chair in front of a cat?

Well I'll give him extra petting and reassurance but I still hate the chair.

If you have to use a power chair, then this is the way I think they should be designed:


The Frontier X5 - you can use it outside and offroad -and inside. So many of the power chairs are limited to inside use - like the one I have. I mean what's worse than having a piece of equipment you can only use in your house? How depressing! No wonder we have a 30 per cent employment rate, folks....


[visual description: First photo shows a theater marquee with the words: Now Playing: Rebel without a Joystick. Second photo is a picture of the Frontier X5 wheelchair, a rugged looking chair with offroad tires.]

I "Stumbled Upon" this...

a new site called Stumble Upon - which , as one of its features, selects videos for you after you fill out a form and then plays them. This is great for anyone who wants to sit back and just relax while "tubing" - or who is using an assistive device and finds YouTube to be a lot of work.

Enjoy! (I've included a direct link to the video feature - the main site offers more features.)

Children with disabilities as happy as classmates...

...this article in the Independent says recent research shows.


"Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.

A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.

Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.

Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. "Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children." Via the Independent


h/t SDS list serve

What to tell kids about prejudice and discrimination

Some suggestions by the ADL, including:

"Why do those people look (or act) so funny? Why can't he walk? Why do they believe such strange things?"

Children need to realize that all people are different. It is important to communicate to children that we often think others are different simply because they are unfamiliar to us. We don't think our own beliefs and appearances are strange or funny because they are what we're used to. Point out that we must appear different to others, too."

For more suggestions, click above.

ADA violations - on YouTube?

That's exactly what Roy did in this clip. He emailed about sidewalk hazards that he saw and videotaped a missing curbcut and broken sidewalk at Harvard University in Cambridge Massachusetts in mid-July (he updated the post August 1 indicating that a curbcut was being added and the broken up sidewalk was being fixed).

Disability Blog Carnival #20: On Holiday

For a cornucopia of posts about the theme of being on holiday, head over to Andrea's Buzzing About. She's put together a multimedia collection of disability bloggers' posts on the theme - photos, iTunes, and wonderful stories that you'll enjoy even if you haven't gone much further than around the block due to shoulder injuries like me.

Oouch! Oh no that's BBC....have you gone over there and supported the guest bloggers? Click above for the carnival, on the label BBC Ouch for information on that....have fun!

[visual description: The disability blog carnival logo is shown in the shape of a rectangular movie ticket. It contains the name of the host blog - Andrea's Buzzing about, the date of the carnival - August 9 -and the words 'Interpreters Available.]

"Subtle" discrimination?

Recently a friend who has a disability called me, very upset. She told me that a group she belongs to had formed a subgroup - calling it a women's group -but hadn't invited her or a number of other people to join despite the fact that this subgroup was acting under the auspices of the main group that was an open organization.

Not realizing that it was intended to be exclusionary, my friend had found out where they met, trekked over there and went from room to room in the building to find their meeting. When she discovered that it was an exclusionary subgroup that she was not "supposed " to find, she was very hurt and stopped going to the main group.

Over the space of a few weeks, it came to light that two other women we know who are disabled also were not "invited" to join the woman's group. One called several women who were attending and asked for details. The woman didn't answer her. And, although the location became known at some point, when these women showed up it was changed.

Discrimination on the basis of disability? My guess is that a number of people, disabled and not, were excluded. It might be kind of humorous (if it wasn't such hurtful behavior) that they called it a women's group, acting as if they needed a separate group from the main for women's issues - and then turned around and discriminated against others.

Then there's the issue of scapegoating which is different than trying to distinguish discrimination from dislike based on dealing with a person. Scapegoating is a result of discrimination and prejudice but can look as if it's legitimate when a person from a minority is "picked on" for personal traits that would be tolerated when shown by someone else in the "in group" - but these same behaviors are not tolerated by someone in the "out group" and are used to justify exclusion. When an individual is scapegoated, she is blamed when the "fault lies elsewhere", according to the Anti Defamation League.

So what causes this kind of behavior on the basis of discrimination and prejudice? There is a distinct difference between thinking something that is discriminatory and acting in ways to promote those exclusionary beliefs. At this point someone might jump up, draw a chart and point at a continuum on it to pinpoint where it falls.

But I don't think that answers the question of what drives people to go out and create an exclusionary subgroup to an otherwise open organization. And what about the fact that the open organization colludes by not disbanding it when its purposes are "found out"? Does it seem too subtle a type of discrimination to people?

To my friend who hasn't returned to the main group, it wasn't subtle at all.

On distancing from the disabled

"When we see people who are disadvantaged in comparison to us, we distance ourselves, both to protect ourselves from empathetic feelings and also to avoid the guilt of not helping them." via changingminds.org on Empathy vs. Objectification

We see it in our social spaces, when special areas are set aside for the disabled. Our history as disabled people consists of being educated separately, institutionalized or hidden away and "housed" separately and excluded socially. Exclusion itself and the need to work toward inclusion is a result of the distancing that has taken place.

So what is this distancing about? Some say it's about an aversion, about the disabled looking different. But as our world grows smaller and media allows us all to educate ourselves about disability - hear about it, look at it, etc., these arguments begin to lose ground. Perhaps years ago, when people didn't get out much or travel or have online access, that would be a more viable argument. You were less likely to meet a number of disabled people, I suppose. But, again, this has changed a great deal.

Then there's the quote above which basically states that distancing can be about avoiding the guilt of not helping those we see as disadvantaged. Well, thanks to all the myths over the years (the poster child, the telethon melodrama), many do see the disabled as disadvantaged. You may even be wondering as I write this - aren't they? Isn't being around the disabled always about helping them, giving to them and then we all go home?

No and that's exactly where it's all a self fulfilling prophecy. When people limit their interaction and relationships to disabled people in those ways, they never learn that being disabled doesn't consist of being in these unidimensional roles.

The reality is that disabled people, depending on their disability, do things differently. I'm amazed at the range of reactions I received in email about the videos of the quad cooking a pizza. Some people were horrified and said he would burn himself alive while others said he was inspirational doing this daily task. I like Dirty butter's comment that a cooking mitt is a good idea next time. Certainly using a quad reacher to lift a hot pizza pan out of the oven has its dangerous moments (although not as dangerous perhaps as using one for other things, I can attest to that!) But it's an example of how a quad does things differently. The comments I really liked were the ones who 'got' that he found a way to make a pizza in the oven.

Seeing disability as a disadvantage does a disservice to all of us. It denigrates the creative, resourceful solutions that people find while living in a world that is not universallly designed. Such a view , unfortunately, grows things like shame, fear and despair in its garden rather than nurturing the human spirit and embracing the individuality of each of us.

Have I ever cringed watching a disabled person do something? Sure I have. I've seen blind people ski for the first time and fall down over and over again. But they get up and eventually they ski. I think it's how we interpret the falling down and the different methods and equipment we use to do things that is key here. I've also cringed watching my nephews learn to walk and struggle to read. I've even cringed watching boyfriends try to cook, much less quads.

The starts and stops of the learning process at times may be somewhat of an analogy here, I suppose, but that's not exactly what I'm talking about either. I think to fully understand what I mean one has to be around disabled people, listen to them, eat with them, and have fellowship with them. This can't happen when distancing continues.

If you don't see the beauty of a child in a wheelchair visiting a park or being surrounded by his friends in a class, you won't ever get that there's no reason to exclude him - and plenty of reasons not to. Nor will you understand his need to do things differently and have the right equipment and access.

And it's sad because we all miss out. When I meet a person who argues that distancing from the disabled is a normal reaction, I respond by saying that disability is natural and I ask if he/she turns away from nature in all its various forms. I ask if he only looks at blue butterflies or orange birds, if he dislikes thunder but wants the lightning. I question if he's ever seen beauty in the struggle of a bird to fly or in the last moments of a summer day as evening falls and dusk descends.

"Of course not - I know it all exists!" is the reply.

And so it is with us humans.

Distancing from disabled people denies them their humanity and personhood. It objectifies people - who are not unidimensional. And it hurts - everybody.

"I think mainly acceptance, for people to look at people with disabilities and realize although they have differing abilities, they are still people, and you can identify with on so many different levels .That's something we still need to work on both here and abroad, because there is still so much stigma attached to the disability. We need to get past that."
-Autumn Grant, Ms. Wheelchair America 2007

Changing Stereotypes

This article over at changingminds.org talks about the ways that stereotypes about a particular group can change. I found it particularly interesting and thought I'd share it.

All I was thinking was Cheese Doodles ...

..on Sunday as I headed down the food store aisle to pick up a few things on my scooter. And I ran into an AB protest in the middle of a grocery store. More accurately, an anti-scooter protest. I think it's a fringe group, however, of only three members. And they weren't wearing any T shirts with slogans protesting scooters. It was more of a silent protest- forming a body chain across store aisles.

The store was fairly crowded but not extremely so. When I went down the soda aisle, a mom and two kids, who were about nine or ten years old, were in front of me. I couldn't pass by them and politely asked to get by. The mother looked at me and, instead of moving to the side, stepped in front of me and said "You can just wait. I hate those things" and pointed at my scooter.

I like my scooter. It's red. It's cute. Anyhow I asked again. She began talking to the two kids as if I was invisible. I considered backing up but that way was blocked as well. In a few minutes they moved out of the aisle.

I moved my scooter to go around them as I exited the aisle, heading across the front of the store for the snack aisle. I was thinking "Cheese doodles." The next thing I knew, child #1, a girl (same family), stepped again in front of my scooter and stopped dead, her back to me. Again I was blocked. Then her brother joined her. He started dancing around in front of my scooter. I wondered if he needed to use the rest room.

I was still thinking "Cheese doodles." (I'm very persistent when it comes to Cheese Doodles.) I backed the scooter up since , for whatever reason, I'd run into the family from hell.

As I did this, their mother joined them. I was expecting them to hold hands and start chanting. As their mom moved toward them I zoomed around them on my scooter. I overheard her snarl "Those scooters should be outlawed. Normal people can't get around any more."

I agree. Normal people can't.

The role of the disability community in defeating California assisted suicide bill..

..is explored in this article. Saw this in my news server this morning.

"The Los Angeles Times profiled the impact of the disabled rights activists and Paul Longmore, a history professor at San Francisco State and a member of the community, said disabled Californians played a big role.

Disabled people, Longmore said, "probably even more than most other citizens, understand the kind of suffering and needless pain that's inflicted on a lot of people and leaves some of them to prefer to die when they can't get the help they need."

Via LifeNews.com

And a hat tip to Penny Richards over at DisStudies Temple U, who blogs about the original LA Times article in which Longmore states:

""HMOs are denying access to healthcare and hastening people's deaths already," said Paul Longmore, a history professor at San Francisco State and a pioneer in the historical study of disability. "Our concern is not just how this will affect us. Given the way the U.S. healthcare system is getting increasingly unjust and even savage, I don't think this system could be trusted to implement such a system equitably, or confine it to people who are immediately terminally ill." Via LA Times

A senator noted that the two main groups opposing the legislation were the disability community and Catholics.

BBC Ouch podcast

Did you know that BBC Ouch has its own podcast? Well it does and if you click above - there it is! Matt and Liz present a humorous and informative podcast show about the subject of disability. They cover disability happenings, news and present a point of view you're not going to hear anywhere else. They also read viewer emails and if they read yours, you get a mug so of course I had to write in. (Yes I was the kid who always looked for the prize in the cereal box first.)

By the way, Wheelchair Dancer and Elizabeth from Screw Bronze! have been selected to be guest bloggers by BBC Ouch and will be starting (I think) today.

With all this BBC Ouch stuff going on, I'm going to give them their own label. (Mug please?) Oh well...

Vacation - You don't have to leave home to have one

When I heard the theme of the disability carnival was vacation, I began to remember the essays I wrote as a kid on What I did over my Summer Vacation. And if I had to title this it would be "Vacation is a state of mind, not a place".

Generally my summers are full of travel as I go from one wheelchair tennis tournament to another. Technically, playing tennis competitively has always been my vacation - simply because , once I took the time off for it and paid for it, I wasn't able to take a "normal vacation". My job is busy and doesn't allow much time off and playing tennis is expensive enough, even at times I was sponsored, that it adds up.

This year since I'm not able to play due to shoulder injuries I was thinking of taking a "normal vacation". However, transferring is painful and my vehicle isn't accessible, so I did rethink that since lifting my mobility devices is very painful and ill advised. I bought a scooter which I've been using to get around town and am staying close to home.

What I've rediscovered, to my amazement and delight, is that where I live is full of tourist attractions. I've run into people at Starbucks who tell me they're staying in such and such a hotel and ask me directions to local places. A few times I've followed behind them and revisited places I haven't gone in years. I've also learned about things to see that I didn't know about. After all, I've been playing wheelchair tennis for over a decade and, being so busy with it, I haven't had time to do this.

In my town we have two new parks. One is quite small and is a few blocks away, built for children with swings and a wooden sandbox. The park is surrounded by beautiful flowers, a stone path and has a romantic looking gazebo. The second is a very large piece of land dedicated to local foliage - trees, bushes and plants - which takes awhile to scooter through. Everything is marked for identification and I learned a great deal about what grows around here.

I also discovered that they built a small park in the middle of town. It's shaded and contains some historical statues, complete with stories and facts. (I love history!) I found six new restaurants, including one that makes ribs which is my favorite food, rediscovered our new library and the food court next to it . I also learned that during the summer there are free concerts every Saturday afternoon and Thursday evening and went to a few of those.

I've found four new trails to go scootering on that I hope I can use my handcycle on if/when my shoulders heal but in the meantime I'm motoring on them. I also took several tours of neighborhoods where new houses have been built - or older houses have been modified - and there are some beautiful ones.

So I'm happy to report that I saved myself a lot of money and time by simply going to vacation - here. All it cost me was the price of my scooter, a few frappucinos and a few hours here and there - along with an open mind. Did I miss going down to Washington DC this past weekend and playing by the L'Eggs Mason Tournament? Or going to Lancaster? Or any of the other half dozen places I play? Do I miss my tennis friends? Sure.

But rediscovering my hometown has been worth it.

Quadriplegic cooking: making a frozen pizza

In this video, the quadriplegic demonstrates how, using a special quad reacher, he goes about making a frozen pizza in an oven. The video was shortened because it took him five minutes to get the stupid plastic wrap off the pizza. I have one of those C5-6 reachers but it's a little different than his - I think there are two companies that make different reachers for quads. (I can get the information if anyone needs it.)

"His Parents' House"

A new short story over at A Different Light.

"One Thumb to rule them all"

As my quest for software continues, I ran across this video about Mac's Switch XS software, used by Michael Phillips. Using SwitchXS with a Swifty USB device and a proximity switch, Michael works his Mac to play games, compose documents and listen to iTunes, send IM's - well pretty much everything - with the use of a thumb.

SwitchXS is a scanning software. It comes with Layout Kitchen. It can be purchased from assistiveware.com in a packaged bundle along with Keystrokes 3.6, an onscreen keyboard with word prediction - or purchased separately.

I downloaded the demos of all 3 programs and put them all together on my iBook and have had no memory issues even with 512 MB. Having never used a scanning software before, I was reluctant to even demo this, but am finding it very helpful as my speed increases. I'm using it with a switch that I hit with the side of my arm . The customization with these programs is impressive. Not only can you devise your own "keyboards" and scanning menus for particular programs, you can save and display them in a myraid of ways in each of the three programs.

Keystroke 3.6 is also an excellent stand alone program. It has a dwell feature, which I find handy. Like SwitchXS there's a 'smart transparency option, which makes the keyboard disappear so you can read what's underneath unless it's in use- handy on a 14 inch screen. There's a second vertical menu with options allowing you to use Keystrokes for mouse functions - and to turn dwell off/on. Surfing the web with Keystrokes and an electronic head cursor would be a great combo for a quad for most things.

Because I vary my computer use so much, I'm looking for a versatile combination of programs to cover some gaps I've run into. I'll continue to share my results here and if anyone's used any of these programs, let me know!

Grocery shopping from a wheelchair

A C6 quad shows how he does his food shopping, using an accessible van with a ramp to get to the store (check out how tight the parking spot is!) and a basket in his lap to carry the groceries. His wheelchair appears to be equipped with E motion wheels. These are attached to manual wheelchairs and assist in pushing. The beginning of the video shows him putting his jacket on and how he does that with his hand impairment. This is a great educational video for people who ask questions about how you can be a quadriplegic if your arms move at all - some people think only of Christopher Reeve when they think of quadriplegics. (His spinal cord injury was higher, resulting in more paralysis.)

As you'll see in the video, at his level of injury , this individual lacks finger dexterity and grasp and lifts items by using the sides of both hands. He's got his basket packing technique down to a science - when he unpacks the basket at the check out, you'll see how many items he has!