Copy of Pope's new book auctioned - proceeds go to paralyzed man

The equivalent of $8000 was raised to help a paralyzed man in Poland who had asked for assisted suicide. Arrangements have been made to donate proceeds from each copy of Jesus of Nazareth sold in May toward his fund. The man no longer wants to die.

This story once again highlights the confusion that goes on around the topics of assisted suicide and euthanasia for people with disabilities. Often the lack of resources, poverty and accompanying despair are the reasons why some people ask for assisted suicide when their condition is not terminal. Who would want to live if that's the future one faces?

We need to look at the conditions that cause people with disabilities to ask for assisted suicide and work to remedy those conditions rather than considering these lives disposable.

"Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not."

- from the website of Not Dead Yet

Marathon 2007 at Ensemble Studio Theatre opens today

Despite the fact that its founder died recently, the Marathon will go on. Click above to see the fare at this NY city legendary spot.

549 W. 52nd St.
New York, NY 10019
212-247-3405

The theater is air conditioned and listed as wheelchair accessible.

Universal design needs to consider low vision users

Scott over at Rolling Rains posts about an article stating that low vision users do not receive the consideration they need when universal design planning is done. (Click above to read his post).

One of my blind friends Sue was telling me that the curbcuts wheelchair users need are a huge problem for her mobility. She provided input on a local level to the design plans for curbcuts so they would take into consideration the needs of blind and low vision people. This may seem obvious to say but it's important to design accommodations in a way that does not present further barriers for folks with other disabilities.

It is also important, as the article Scott cites points out, to consider lighting conditions when planning for low vision users. The article describes the difficulties a woman with low vision encounters in her own home due to the lighting conditions- a situation that will become more common in the baby boomer generation.

As we see more input from people with disabilities, hopefully architects and others will learn what constitutes true "universal design". To achieve that goal, I encourage readers to speak up if they encounter accommodations that present additional barriers or have ideas to improve future designs. Your experiences and input are valuable.

Straight Ahead: Using a Powerchair

I got my used Jazzy 1113 power wheelchair yesterday. It's highly manueverable . I'm impressed at how the chair can turn quickly and easily in small spaces. I have not tried to use it outside yet since I'm still getting the batteries up to snuff.

It's the first time I've used one and lesson one was all about the importance of keeping the wheelchair going straight forward with the joystick. I have a small ramp going over the lip of the threshold into my bathroom and the first few times I went up it everything was fine. The third time something went amiss and it took me a minute to figure it out - basically I did not approach it straight on.

The wheelchair just died on me halfway up this very little threshold. I turned the chair off right away, figuring I'd done "something" wrong. Then I turned the chair on again. It powered right up. I backed into the hallway , straightened the chair out and went in without further problems. The manual cautions users to take inclines in a straight forward fashion.

Other than that I haven't had any problems using the chair. I'm keeping the speed low until I'm better with the joystick. This is keeping me from running into counters, the refrigerator and walls. I'm used to my manual wheelchair which I've used for over a decade and this feels like going from walking to a wheelchair all over again. I'm relearning how to judge starting, stopping, how to open doors, how to avoid running over the cat and Meredith and the best way to deal with tight spaces (all homes have them). My most challenging place is in my kitchen. I have a variety of things I do out there - using the sink, the refrigerator and appliances, etc. and I'm still working on getting the approach right so I'm close enough and at the right angle. However the energy I am saving is definitely worth any adjustments!

I am amazed at how easy it was to charge the chair. It has an onboard charger so all I had to do was back the chair up near an outlet and plug it in overnight. Maintenance was one of the reasons I did not want to get a power chair but this couldn't be easier. I'll get new batteries if these don't work well but I'm going to give them a few good long charges before I give up on these.

One thing that has been frustrating and making me unhappy about using a manual chair in the past as a quad is the feeling that I am limited by my arm strength from moving from Point A to Point B . I play wheelchair sports to keep my arms as strong as possible, but on days when I work a lot this is an issue. I just need to wrap my brain around the fact that a power chair gives me the freedom to independently get from one place to another and conserve energy rather than see it as giving in somehow.

Making equipment changes is such a lesson in seeing how important it is how you frame things in life.

Caption Fun

[visual description: A white wall is shown adjacent to an open doorway. From right to left there are three painted figures usually seen on restroom doors - a male figure in blue, a female figure in red and a slightly oversized figure in a slightly oversized wheelchair in gray . The male and female figures are facing forwards and the wheelchair figure is facing toward the other two figures sideways.}

Wheelchair User: They told me I could get concert tickets here and I fell for it.

Top 10 Uses for a Power Wheelchair

10. Bigger and wider tires to squish bugs with.
9. Towing my other wheelchair.
8. Able to pet the cat while using the joystick with one hand.
7. Learn about science as you dash madly from room to room to measure the battery life.
6. Create wider and better accessible doorways in your habitat. oops
5. Having a larger surface to put decals on.
4. Improve your joystick skills for computer games
3. Brake suddenly to avoid squirrels
2. Use high speeds to surprise and astound your friends especially when they're standing in front of you
... and the number one use is......drum roll....
1. Saving energy so you can have a life

Re-Mission: A game and community for teens with cancer

Blast those cells! Fire up - here's a video game developed by Cigna for teens and young adults with cancer to play. Doctors are hoping it will help young patients understand why their ongoing treatment is necessary even when symptoms may be silent. This site also provides online support - click above.

Mom of 4 on oxygen dies after power cutoff for unpaid bill of $122

A woman in New Zealand who relied on oxygen died several hours after power was cut off to her home by the power company. Relatives told the company about her physical condition and her reliance on oxygen but the cut off took place because there was an unpaid $122 bill.

"Six days before a Mercury Energy representative arrived Tuesday at the house to disconnect the electricity, she was $122 in arrears.

Sheehan said both Muliaga and her son told the technician she was dependent on the oxygen machine to stay alive and invited him into the house to see it. "Then he cut the power off," Sheehan told The Associated Press." Via CNN

An investigation is ongoing.

GOJO: Using Public transportation in the UK

I received a link to this new site earlier this week and just went over to look at it. It's a great idea to encourage more disabled people to get out and use public transportation- provides links to information, tips and trip planning (and some fun stuff too!) It even provides ideas for outings.

Click above to check it out.

Muscular Dystrophy : Regan

In this video, Regan talks about her philosophy of Carpe Diem- and sky diving, having muscular dystrophy and her relationship with God.

Momentary Reminders of Prayer

I believe that one of the hardest spiritual practices for most people to follow is to slow down and give the Holy Spirit a fertile ground - and listen to spiritual guidance. This involves some discipline, a setting aside of time and the ego/self, and requires profoundly private prayer.

I enjoy praying at Mass and with others. When I'm in a group that says the Our Father or another prayer, I feel a common bond that is at once joyful and sublime. I do not feel a part from but feel a part of in those moments.

Yet, for me, in order to truly discern God's will, I require private prayer. I've done this since I was very young . I believe that I was led to it by the Holy Spirit so that I may find further spiritual guidance - when God wills it. I know I can't force this to happen- I can only be open to it. So I've always accepted that it was part of the process for me.

Over the years, I've had periods of time when I found it almost impossible to slow down and trust this process. I went through angry phases where I would turn my face away and refuse to pray. I found this spiritual separation very painful. I rationalized it by saying that I did not want answers or guidance in God's time or way but my own. When I returned to my usual practice of prayer and stillness, I felt renewed even though the anger did not immediately lift.

I've learned that it's best for me to think of my paralysis as an advantage in all of this rather than as a hindrance. Who better to practice stillness than a quadriplegic? But it's not as if because of my disability I have nothing to do or cannot do anything. It's because I need to plan when I move my body. Each part of it only moves after a bit of laying out a route. If I want my leg to lift, I have to lift it. If I want to get across a room, I need to get into a wheelchair. If I want to eat I need to go get a special device.

All of this gives me the gift of that split second, that reminder of my need to pray. It's only a moment but that moment has been a great gift to me. I often wonder if I was not paralyzed if other reminders would be placed into my life by God. I bet they would. I think everyone has them. When we listen to these momentary reminders and practice profoud prayer, in that stillness we can remain open to discern our next step - or roll of our wheelchair.

What Attitudes Can Do to People with Disabilities

[visual description: A picture of a metal ball and chain used to shackle prisoners.]

It comes not from the disability, but from the attitudes toward it.

How do attitudes affect you?

Journal of Literary Disability

This new journal has just published its first issue online. It offers an excellent array of subject matter by prominent authors and poets. The theme of this issue is Disability and Poetry.

Subscribing to the journal is free. Click above to access it.

Let us run to Mary

Let us run to Mary, and, as her little children, cast ourselves into her arms with a perfect confidence.
– St. Francis de Sales

One of my dad's friends was a priest. They went to Regis High School together in New York. My dad was a scholarship kid and lost his father suddenly his senior year to a heart attack so the going was rough. He told me that Fr. Fred was very kind to him during that difficult time. After Regis, my dad was drafted and served in the Army Air Corps in Korea as a navigator. Fr. Fred Jelly went on to become a priest.

Fr. Fred, as we called him, would come to our house to visit with his sister, who was a nun. They were both teachers, which intimidated us a bit since we went to Catholic school. On one visit my three year old sister, who was getting a bath, streaked naked through the living room laughing as toddlers do. Both Fr. Fred and his sister almost fell off of the couch laughing but my older brother and I were aghast and ran around trying to catch her.

Fr. Fred was a Marianist and this quote reminded me of his great love for Mary. He spoke eloquently about Mary whenever he gave a sermon at Masses he held in our kitchen and how she exemplified so many of the qualities that would lead to a good and productive life of service.

It wasn't until I was older that I realized that Fr. Fred Jelly had held positions such as dean of studies at various seminaries and was nationally known for his writings as a Marianist. This humble man never spoke of any of his achievements to me when I was a shy kid, but asked instead how I was doing in school and asked me what I wanted to be when I grew up. He was a consummate educator and scholar and devoted himself to his students at Mt. St. Mary's Seminary in Maryland.

He was very active in the Mariological Society. I found this on the web: "At the 1977 meeting, Fr. Fred Jelly, O.P., urged that the Society be more mindful of the role of catechesis and of the hermeneutics of the Marian dogmas. At the 1978 meeting, Fr. Jelly suggested that more attention be given to the ecumenical role of Mary and that the special relation between Mary and the Holy Spirit be studied." And after his death I found this:

"A special feature was a Power-Point presentation from Sr. Ann Marie Harrison, I.H.M., on a Marian invocation, "Mary, Beloved of the Trinity." ..Through her initiative, the title has received the approval of Cardinal William Keeler of Baltimore; the late Cardinal John O'Connor of New York City; Fr. René Laurentin; the late Fr. Fred Jelly, O.P.; Prof. John Saward; Fr. Theodore Koehler, S.M.; and many others. Sister Anne Marie believes that the invocation will promote a consciousness of Mary's loving relation to the members of the Trinity and a Trinitarian spirituality which includes the presence and praise of Mary. ... The conferences given at the meeting will be published in Marian Studies, vol. 53 (2002), available in the spring of 2003. "

I knew him simply as Fr. Fred.

If you'd like to hear Fr. Fred, some of his tapes are available at Alba house (click above). And here's one of his books - Madonna: Mary in the Catholic Tradition:


I'd like to post a prayer to Mary that he taught me - I believe it's the oldest known prayer to her:

"We turn to you for protection,
Holy Mother of God.
Listen to our prayers
and help us in our needs.
Save us from every danger,
glorious and blessed Virgin."

(Found in Greece in the year 300)

Wheelchair accessible trails

If you live in the San Francisco bay area, Ann Sieck and her husband Dan Hill have already found great trails for you to use (if you want to train for the 2007 Extreme Wheelchair Trail Ride below) or if you just enjoy nature. Ann, who has MS, has camped with her family through the years and decided to put together a guide for others seeking trails that are wheelchair accessible. She has also written other articles about her outdoor experiences.

For a list of accessible trails for other areas around the country, click here.

Extreme chairing: Where's your sense of adventure?

[visual description: A photo of J2, the only rider in the 2006 trail ride, in his power wheelchair and racing suit.]

I must say I'm a little disappointed. I found the Extreme Chairing website online only to discover that at last year's fundraiser they held an event for power chair users to ride a 45 mile trail over two days - and only one guy, John J2 Mryczko, showed up to do it. In his day job, John is a graphic designer.

C'mon folks - where's your sense of adventure? It's not as if the one guy who showed had the best equipment - his chair was eight years old. It took him several more days to complete it due to chair breakdowns , rain and the like - but it was all about heart.

I've seen folks play tennis in power wheelchairs, hockey in power wheelchairs and I must admit I'm glad to see an event like this - especially when it raises money. Click above to get info about this year's event - in August. Not that far away.

Operation Iraqi Children

Many of our servicemen and woman have been very touched by the plight of the children in war torn Iraq. This is an organization that helps American soldiers help Iraqi children by reconstructing schools and gathering learning materials.

Always remember- Memorial Day 2007

In the silence of this moment I will my lonely vigil keep.

He did not want war but served.

Back on the road again: No access at the bus stop

Our intrepid traveler (below) finally arrives at the bus stop only to have to go back into the street to wait for the bus because there is no curb cut access to the bus stop from any angle. He is, however, a sport and tries all angles. The people waiting at the bus stop kindly offer to lift his chair up on the sidewalk, however his powerchair is too heavy for them to manage it.

No sidewalks , no curbcuts: a dangerous route to the bus stop for a wheelchair user

This video highlights a common problem for wheelchair users trying to get around- sidewalks that suddenly stop or have no curbcuts causing them to have to roll in the street. I like this video because it is filmed from the back of the wheelchair user and you can hear the cars whizzing by almost at his height - I've had to do this and it's pretty scary. This is the only way this guy can get to the bus to take mass transportation.

Triple amputee about to graduate from medical school exudes an aura of competence

This story in CNN caught my eye, not because it was about a triple amputee - but because it emphasized what she has to offer as a talented young woman about to begin her residency. Lim, who lost both legs and one arm at 8 years old due to bacterial meningitis, went back to school in five months and says she chose pediatric medicine as a field due to the experiences she and her family went through.

Click above to read the rest of the article.

No one should have to heal alone

Marines don't go into battle alone. One Marine, who woke up in a hospital bed after an injury to his head from mortar, decided that they shouldn't have to heal alone either.

"Col. Maxwell had a wife and two children to go home to after he was wounded. But he thought of the Marines fresh from high school whose parents live in other states, and the men and women who joined the corps to get away from home or had none to return to.
Where would they go while their buddies were still at war?
Today, 30 injured Marines live together in former officers' quarters modified with wheelchair ramps and grab rails. Most of the staffers at the barracks are wounded, too.
...As the program expanded from just a few men, the team split into three squads. One heads to the Camp Lejeune hospital to coordinate doctors' appointments and medications and check on Marines arriving on medevac flights.
The others work in public affairs or serve as teachers' aides at Johnson Primary School." Via WFAA.com

Maxwell Hall is a place where wounded warriors gather as a final stage of healing after going through hospitals, surgeries and the like.

Click above to read the entire article on this Memorial Day weekend.

The only cat syndrome

[visual description: A photo of my cat, a black and white tuxedo long hair Angora.}

We've all heard about the only child syndrome. But not enough has been written about the only cat syndrome.

Usually I live with two cats but when Murphy passed away this year, I decided to give it a go with having one cat - my three year old male named Buddy. I was a bit concerned that he might be lonely being an only cat. I thought perhaps he might go through a grief process and wander around looking for the cat who died as I've seen other cats do.

It was not an issue. I never saw Buddy look for Murphy although he did immediately take over her bowl. He also took her place in bed, the spot reserved for the cat with the most territorial rights. When I asked "Do you miss Murphy?" he yawned, rolled over and showed his fluffy belly for me to pet.

Alrighty then. So much for his need for feline companionship. As the days went on, Buddy eased ever more comfortably into the role of the only cat. I no longer had to multi task between two cats. He didn't have to share "lap time". He discovered that he could jump up in my wheelchair any time - no waiting, no number to take. He figured out that he came first. He loved it.

So yesterday Meredith comes over and says she saw a really nice white cat in Petco and almost got it for me. Buddy, who was on the bed, narrowed his eyes. I asked about the cat and Buddy turned and gave me a look. I must be imagining this, but I swear he shook his head no . And I said to her "I don't think Buddy would like that." He sighed, laid down and closed his eyes.

Alrighty then.

Excellent video on blindness and visual impairment

I'm linking over to Planet of the Blind (click above) where Connie has posted a video about blindness and partial visual impairments that is excellent. Thanks Connie!

It answers many questions and based on the comments has been of help to friends, relatives and loved ones of those dealing with these issues as well as folks living with them.

I always encourage everyone to take minutes out of your day to view these videos. Educating ourselves about disability is a wonderful way to practice inclusion. If you'd like to view more information about disabilities, click on my label "learning about disability".

Futile care law changed- UPDATE

Efforts in the Texas legislature to extend deadlines accompanying the futile care law failed when the House did not act to pass the bill this week.

UPDATE: A bill passed the Texas Senate unanimously that would "extend the initial notification period to five days, and would give families a minimum of 21 days to look for a transfer to another hospital after the ethics committees' decision. The measure would also prevent hospitals from using the law on patients whose only life-sustaining treatment is artificial hydration and nutrition."

Via Inclusion Daily News

I don't want to rent to you

[visual description: A picture of a "For Rent" sign is shown.]

My friend Charlie* is looking for an apartment. He uses a wheelchair and is visibly disabled. Although he can afford most of the apartments he's seen, has good credit and excellent references from former landlords, he's been turned down for every single one after he's gone to look at them.

Why? As one prospective landlord bluntly said to him "I don't want to rent to you. There'll be problems because you're in a wheelchair that I don't need to deal with."

This landlord was the eighth on a list of ten who turned Charlie down in a row. And the landlord was surprised when he was contacted by a local attorney who informed him that he violated the Fair Housing Act by discriminating against a person with a disability. Many of those renting or selling housing who act in discriminatory ways toward the disabled may find themselves in this position as the years go on. Expectations of people with disabilities have risen and some, like Charlie, will seek legal redress when denied housing.

Charlie told me that he wants to rent an apartment near his aging mother to make things easier. He's willing to jump through the legal hoops of filing complaints and possibly suing to have the same access to housing that able bodied people have enjoyed in our society. Not only does he need to solve his own personal situation, but he is doing it for other people with disabilities who may not have as many resources as he does.

"If nothing else," he told me, "maybe some of these landlords will think twice next time before automatically closing the door on a qualified tenant who has a disability." And he adds "Maybe it will save some young person from hearing those words 'I don't want to rent to you'."

To file a fair housing complaint, call toll-free at (800) 699-9777 or (800) 543-8294 (TDD). Or visit HUD on the Internet at http://www.hud.gov/complaints/housediscrim.cfm to fill out a discrimination claim online. Local Boards of Realtors will also accept complaints alleging violations of the Code of Ethics filed by a home seeker who alleges discriminatory treatment in the availability, purchase or rental of housing.

[*For reasons of privacy, Charlie is a fictitious name.]

Wheelie Musical

Here's a video of a guy on roller blades who plays music by tapping on different bottles (with extensions from his skates) as he rolls pushing himself on ski poles...and people stare at us?

Finding the joy in a joystick

I'm a quad but I've always used a manual wheelchair.

At times it was tough keeping up with friends who were paraplegics or had no upper body paralysis, but that's okay. Sometimes I fell half a block behind or friends slowed up a bit to wait. There were incidents - like the time my friend Janet and I hit the hills at the San Diego Zoo. On the way down one steep hill, my lack of grip landed me into the bushes so she wordlessly fished me out. Going up the hills made me want to take the little shuttle bus. But I hung in there.

No matter how hard I've worked to keep up ,para-wannabe that I am ( I tape weights on, I diet, I handcycle with quad attachments, I play tennis with duct tape) I'm a quad.

Last week I was asked a series of questions, much like the ones in this article.

Things like: have you noticed you're putting off errands? has your social life diminished? have you been more tired? do you have increased pain? decreased mobility? less activity? Yes. Yes. Yes. I find myself turning down things to do because I'm so tired but it never occurred to me that it was because of - well - pushing- even though my arms are well - paralyzed.

And even now I think I should have frigging lied when they asked me those questions. But I didn't. I told the truth and I was told: get a power wheelchair. Just use it part of the time. After all , you're not more paralyzed. Nothing to panic about. So why did I want to roll screaming into the street?

It's not that easy a change to make, not only based on how I feel about it, but as a practical matter. Power wheelchairs are pricey, custom made and take time and money to get. And they won't fit into regular cars.

So today I bought a used Jazzy -that looks something like this- and I'll see how it goes. At least using a joystick will be fun.

[If you use a power wheelchair that you LIKE, leave me a comment. And if you LIKE using a power wheelchair, please let me know.]

By the way, here's a fellow who figured out a way to stay in his manual chair and use jet pulse to propel it:



uhhhh I think I'll pass...

Memorial Day Images

Via NY Times

West Point graduates of the class of 1937 get up from their wheelchairs as the 2007 graduates march in their annual review several days before graduation.

Here are some tributes to fallen soldiers.

Disability Blog carnival 15 is up!

The theme this time is Disability and Family over at Ryn's Tales. Don't miss this one - the subject matters of the posts that are included are varying and engaging and Ryn has done a superb job on it - much to read over there!



(Image description: Image is black and white. In it a one legged man stands on crutches on a beach looking out at the San Francisco Bridge next to a small child who is holding onto one of his crutches as one might do to a parents hand.)

Thanks to Kay at The Gimp Parade for designing this blog carnival logo.

So what is Wheelie Catholic reading?

_ The Ha Ha by Dave King

About a guy with a disability whose female friend goes into rehab leaving her son with him - he has multiple disabilities as a result of a war injury and is mute. I really like the way the main character is portrayed so far - he's active and engaging. My reading of this was interrupted by my day job (da nerve) but I intend to get back to it this weekend.

You can get used copies of this book very reasonably over at Amazon - sadly it looks as though it did not sell well which is unfortunate because Dave King's writing is quite good.

Next on the Queue


-Rise, Let Us Be On Our Way by Pope John Paul II

-Changing Planes by Ursula LeGuin

-The Red Tent by Anita Diamant

I want to read Children of Hurin but it's not available on tape yet and audible.com and bookshare didn't have it last time I checked. I would use my headpointer but I have a lot of reading in my job right now so I think this is going to be au audio deal.

Assistive technology I use to read: headpointer and reading stand; books on tape from Recording for Blind and National Library for Blind; audible.com; bookshare.com

What are you reading - and if you have a disability - feel free to share the assistive technology you use to read.

New Book: Reading and Writing Disability Differently

Tanya Titchkosky, Reading and Writing Disability
Differently: The Textured Life of Embodiment

University of Toronto Press,
2007.

The book is available at Amazon.

"Mixing rigorous social theory with concrete analysis, Reading and Writing Disability Differently unpacks the marginality of disabled people by addressing how the meaning of our bodily existence is configured in everyday literate society."

Via the SDS list serve

Personal Mobility Vehicles: A new form of Wheelchair Envy

[visual description: A picture of a PMV - personal mobility vehicle that is open. An open door on a hinge overhangs a center compartment with a single modular passenger seat. }

Wheelchair envy - it's all around us. How many times have I heard people say in line "I wish I had some place to sit down"? What about that time in McDonald's when there were no tables left and my friends had to eat standing up and kept reminding me how lucky I was that I could just use my lap as a table?

And now we have the ultimate form of envy: the new personal mobility vehicles. Take a look at these. They resemble the shape of a wheelchair. People will deny that but let's face it: you have the two big wheels on the sides, the single seat in the middle and even a reclining- tilt feature apparently. (I wonder what those two poles on the side are - for sip and puff , perhaps?)

I'm not fooled (and no other wheelchair user will be either!) by the use of colors other than the traditional black. Wheelchairs today come in any kind of color you want.

Wheelchair users have had their own personal mobility vehicles for years. Maybe we haven't called them that but we were first. And no matter what kind of design anyone comes up with, it's merely an imitation of the original wheelchair. And now we are going to have all kinds of pretenders and wanna be wheelchair users wandering around in these - things - trying to take up space on handicapped check out lines, cutting in front of us on ramps and who knows what else.


There is one thing, however, that folks who envy us our pmv's may not have thought of , but they will soon find out - sticker shock.

Giggles from an Iron Lung

only at... A Different Light

99 Balloons - A tribute to Eliot

Eliot was born with lungs that didn't work right, problems with his DNA and other medical difficulties. His parents cherished every day of his life - all 99 of them. This is their simple tribute to him.

Leaman Potental Foundation

Jesse Leaman was still in high school when he sustained an injury to his spinal cord. He went on to study astronomy, earned his bachelors and went on toward his Ph.D.

And he wants to give back. So he formed a foundation to work toward independent housing for people with disabilities- to fill in the gaps caused by lack of services - emphasizing a community approach where people benefit from services and give back in ways they can. Click above to read about his ideas -

And while you're over there, take a look at his Gryphon Shield if you haven't already seen it on Gizmodo. It's a gadget beyond belief designed for use on electric wheelchairs and scooters and personal mobility vehicles of all sorts - including things like rear view mirror, WiFi capabilities, a DVD player - wow! It can also be used to rig up enivonmental controls or monitor vital signs. Sort of like - NASA?

Curb cut case victory

A judge in Riverside California awarded a wheelchair user over $220,000 after he spent a decade fighting to get curb cuts fixed. After measuring, photographing, and most probably tipping over 189 of them, he rolled away with a monetary award - and a court order mandating the city to fix those curbcuts over the next four months.

"Lonberg, who was paralyzed below the waist by a drunken driver in 1983, sued the city almost 10 years ago, after years of trying to persuade officials to fix sidewalks.

In setting damages, Larson noted that Lonberg had repeatedly encountered improperly constructed ramps, including nine he tried to use at least 100 times each near his home."

Via examiner.com

What to do what to do!

[visual description: A stick figure scratches his (her) head.]

I'm facing (yet) another medical equipment issue and, of course, options always exist but-

I'm always amazed how when I follow the standard advice given, it's a waste of my time .

Which is why I've developed a habit, like many of my disabled friends, of depending more on peer advice than professional advice when it comes to decisions like this. I'm certainly not unique in any of the issues I face as a quadriplegic - many have gone before me and will come after me - and it's at times like this that I need to let other people share resources with me that they have used, soutions that have worked for them - and ask for prayers and positive thoughts!

Just think - when I'm through this one, I can share what I've learned with other folks.....and ain't that what it's all about?

Grief Camp for soldiers' children

As Memorial Day weekend approaches, I'd like to remind everyone to pray for those grieving loved ones and friends lost in the war. Last year a group of families, including children of parents who died in Iraq and Afghanistan, gathered in Washington DC through a program called TAPS to work on their grief in groups.

One teenager, who lost his dad, shared how kids in school sometimes laughed at him when he tried to talk about his dad dying in the war. His grandmother, who lost her son, wonders if people understand her loss and the changes in her life since she has taken in her grandson to raise. A little girl said she wakes up at night alone and thinks of her dad as being asleep on the ceiling above her - so she can be near him. She writes that what's the matter with this situation isn't just that her dad died, but that it was four days after her birthday.

Yet, despite these poignant scenes, a thread of hope, laughter and joy comes out of their shared grief. If you click above, it will take you to the video. Let's pray for these folks as they meet this weekend to help each other heal.

TAPS can be found at http://www.taps.org/

Newly injured paraplegic talks about experience

In this interview, a T6 paraplegic speaks about her experiences after her injury, including rehab, home modifications and coming home to her family.

Man in wheelchair hit by street sweeper

On May 1, a man in a wheelchair was injured and hospitalized after being hit by a street sweeper at an intersection. His injuries were not specified in the MSNBC article, nor did it state whether the driver was cited since the "incident" (I'd call it more of an accident) was being investigated. I haven't found any further updates on this story, but if anyone does let me know.

"Don't let disabilities or age rob you of a stylish home"

In this article about universal design ideas presented at the Atlanta Home Show, the benefits of planning such living spaces - for everyone - are discussed.

It discusses modifications to prevent falling and other ideas for people with disabiilties, elderly people and family caregivers:

"Pam Sanchez, of Pam Sanchez Designs in Atlanta, Georgia, designed the "Safe Home for Life" kitchen. Some of the universal design elements she incorporated were different levels of countertops, elevated appliances, movable work surfaces and shelves that slide out of cabinets.

Sanchez used three different countertop heights in the kitchen, each with multiple purposes. The lower countertops could easily function as an eating area or could serve as a work space for children or people using wheelchairs. Mid-level countertops allowed appliances such as ovens and dishwashers to be mounted at a more comfortable height. The tallest surface is more ergonomical than average-height countertops, allowing people to prepare food without having to bend over the work space.

Candice McNair, of Bright Ideas Interior Design Inc. from Marietta, Georgia, designed the master bedroom and closet installation. It incorporated an adjustable queen-size bed, a hospital bed, comforting colors and many details to make care-giving and living with disabilities easier and stylish."

Via CNN

Interesting how it's becoming more frequently acknowledged - right in the headline of this article and others - that the some of the same products can be marketed toward both groups - and this is the second article I've seen in a "Style" category in the past week linked to the word disability. Click above to read the article.

Update: Parents of boy with autism win case for right to self represent in court

Parents of an autistic child won a Supreme Court case granting them the right to self represent -

"...the right to go to court without a lawyer to challenge their public school district’s individualized plan for their child’s education.

The 7-to-2 decision involved an interpretation of the federal law that gives all children the right to a “free appropriate public education,” regardless of disability. Millions of children receive benefits under the law, the Individuals with Disabilities Education Act. Most federal appeals courts have ruled that when a dispute brings families and school districts into court, the parents cannot proceed without a lawyer."

Via NY Times

Information on Attachment Disorder

In my work with abused and neglected children over the years, I've run into cases of children who have reactive attachment issues and I've found a useful site which I'd like to share.

If you'd like to read more about attachment disorder, please click above.

New Book: Reasonable People

Found this book in posts over at Planet of the Blind -

Reasonable People is a book about one family's journey - a couple who adopts an autistic child who has been abused and also has attachment disorder. This memoir about autism and adoption by Ralph Savarese will be available tomorrow. I highly recommend it for everyone.

Baby Emilio passes away

Emilio Gonzales died in his mother's arms the family attorney told MSNBC. The toddler, who was in the middle of a controversy involving the futile care law in Texas, had Leigh's disease.

On the 80th Anniversary of the Buck decision and Contemporary Trends in Eugenics

"This month marked the 80th anniversary of the disgraceful Supreme Court decision in Buck v. Bell, which upheld Virginia's involuntary sterilization laws. In his majority opinion, Holmes declared: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind . . . Three generations of imbeciles is enough."
...Though society may be inclined to regard Holmes's detestable opinion in Buck v. Bell as a relic of a time past, eerie similarities exist in contemporary remarks of the well-respected."

Via Washington Post Op Ed by Andrew J. Imparato is president and chief executive and Anne C. Sommers is the policy counsel of the American Association of People With Disabilities, based in Washington.

This op ed explores the current trend in eugenics in legislation such as the futile care law, Britain's Royal College's argument for active euthanasia a la Peter Singer, increased prenatal testing, and perception of the disabled as "burdens" and "defective".

The authors write:

"On this 80th anniversary of Buck, let's not foolishly believe that victims of eugenics are an artifact of history. So long as we speak in terms of good genes and bad genes, recognize a life with a disability as an injury, and allow health policies to value some lives over others, we continue to create human rights violations every day."

Living with MS as a family : scooter sleigh ride

I love it when I find images of people with disabilities having fun! Please feel free to send me links to any you find or may have so we can share them with others.

Personal responsibility and self advocacy

I receive a lot of requests from people with disabilities for free help with advocacy problems. Because I have a day job and only so much energy, I have to turn down most of these requests.

Some of the people who ask for the help of an advocate really don't need one. Their issues can result from one of two situations:

1. There are ways for them to self advocate with a referral to information or
2. They are not taking personal responsibility for some of their choices which has resulted in the situation created.

The first situation is easy to deal with. I can give them a direction to go in and most people are able and willing to help themselves. But the second group of folks is very hard to deal with.

They simply do not recognize that their problems are of their own making. These are the people who , even if I took their cases on, would probably not cooperate with me when I tried to help them out. If I asked for information, they would fail to document things or accurately report things. If I needed a paper signed they would lose it. If I suggested they talk or not talk to someone about the case, they would call me a week later and mention that they had to go against my advice and they hoped it didn't "hurt my case".

Which, in the end, is why I've learned that personal responsibility is key when dealing with advocacy situations. It's never good to battle against a situation where one person isn't perceiving things realistically and it's even worse to do so when that person won't accept responsibility and help himself.

My Scottish grandmother told me when I was little that when it rained a person who had to go out in it could react in one of two ways: She could complain about the rain or bring an umbrella. Basic personal responsibility runs along the same lines: sometimes you can't change a situation right then and there and there are always going to be things you can't control, but you do what you can to help yourself.

I can't help people who throw up their arms and moan about getting wet. If that's their choice, no matter how many times I tell them where to buy an umbrella, how to open an umbrella or even if I lend them an umbrella , I can't make them use it.

I believe in the end that people with disabilities all have to do some self advocacy. Checking to make sure that we've acted in a responsible way before we lament about the rain is the best advice I can give to anyone as a starting point.

Echoes, Rising

Amy at Open Book writes a spiritual and contemplative post about Virginia Tech - a month afterwards. Click above to read it. And then, perhaps, pray.

Car 54 where are you?

The NY Times posted an article about voice recognition in cars which describes the many advances in the technology as more buyers want this feature. It explains that voice recognition in autos require that the system "listen" to users' requests for things such as directions, traffic conditions, etc. Not having seen any of these cars, I was amazed at the progress that's been made.

So it got me to thinking about a discussion I had earlier this week with another disabled woman who was interviewing me for an article. We were talking about accessible vehicles which are quite expensive when you need lifts, ramps, or the like to get yourself around in a wheelchair. She really likes her van which helps her with her job and getting about and I was glad to hear that it's been a good purchase for her.

I have a few friends who drive accessible cars. One owns a new Honda Element that has a ramp that comes off the side and she loves it. Her about price with the features she needed: over 50 grand. I have another friend who has an accessible van with a lift. Her about price with the lift, a captain's chair and other features: over 40 grand.

Now their accessible cars, nice as they are and as much as I might envy them on days when I am struggling and dropping my wheelchair to get into my car, do not talk to them. Their cars do not listen to them either. I've seen their cars pull things like:

1. Open the ramp and then open a side window (for no apparent reason) when it's raining out
2. Open the door to the lift but then the lift will not go down
3. Experience electrical difficulties where the ramps and/or lifts repeatedly open/shut and no one is going anywhere that day

And no amount of talking to their cars works. These cars aren't hearing what their owners say. After spending 40 or 50 grand you can imagine the kinds of words that come out of the owners' mouths. (A hint: they aren't asking for directions to Pittsburgh.) It can get ugly.

What I'd like to see for that kind of money is this: an accessible car that's gas efficient, has few service repairs and opens the ramp/lift/whatever when I press a button. Whether it turns on the music I like, gives me directions or listens to anything else I say, I really don't care.

I would like features to make me more independent, like a better way to clear off snow/ice. I don't suppose, however, that voice recognition will help with that either.

2006 Testimony Hearing on Institutional Bias

To read the testimony of disabled people who lived/live in nursing homes and want to be out in the community, click above.

Of wayward whales, unnatural habitats and the suicide of a double amputee

Over the past several days, scientists have been experimenting with various sounds to lure an injured wayward whale and her calf who are stuck in Sacramento about 90 miles from the sea into their natural habitat. There was a news conference where the public were urged not to overreact because the animals are fairly safe and it could take weeks before scientists are able to coax the animals back to the sea. Apparently so many folks are concerned about these whales that they need to calm them down. Pietr Folkens of the Alaska Whale Foundation said there is no sense of urgency and that the whales are not in bad shape.

This story is being covered nationally on TV and in newspapers. It is also on the web page of Seattlepi today. And on their front page further down is another story: Double amputee commits suicide with gun. The story indicates that a male double amputee confined to a nursing home shot and killed himself with a gun after a woman brought him a parcel during a visit.

And I thought of all of the efforts being put into those wayward whales to get them back to the sea and lure them into their environment and how people are so concerned for them. It's a good thing that we care for animals and protect them.

But it's sad that the buried news story about the double amputee won't get the same coverage and attention that the whales get. And it's also kind of sad that people don't really know or acknowledge how many people with disabilities lead desperate lives in nursing homes - which causes some of them to wish for suicide as a way to escape the confines of their unnatural habitat.

ADAPT is fighting for the passage of the Community Choice Act of 2007 which will change the current bias toward fiscal spending toward institutionalizing people with disabilities rather than the lower cost community care alternative preferred by many disabled people. Their site reads:

"(CCA, S. 799 and HR 1621). Introduced in March, CCA will end the nationwide institutional bias in Medicaid funding and give Americans with disabilities the real supports and services they need to get out of expensive institutions and rejoin community life."

If you believe that human beings as well as animals deserve to be in their natural habitat, click above to read about their work. And take a moment to read the stories of people who lived in nursing homes by reading the testimony post above.

"Disability Cool Gone Wild"

Over at Wheelchair Dancer, she weighs in on the story of the amputee runner who is training for the Olympics but may be barred because some folks see his prosthetic legs as an advantage. Click above to read her thoughts about this issue and some interesting comments over there . She writes:

"To me, these sound like the arguments that have been used to keep other disabled athletes out. I mean, is Pistorius more likely to fall than any other runner? No, of course not. He is a pro. The distinction made here between technological aids (which would be additions to the body) and prosthetics (which are the body) seems to be off track (hee hee). And if TAB runners begin adding stuff to their shoes, it seems you could check for that as easily as you check urine and hair for drugs."

I also wrote about this earlier this week and find her post very interesting (as I always do ).
[My post on it can be found by clicking on the label "sports" ]

CarePlace

Need online support for your illness?

Their website states: "Share pictures, write in journals, post in forums, and send private messages." Click above and check out CarePlace where people share their common experiences about their illnesses.

Worth Watching: The Boys of Baraka

{Visual description: One of the four boys featured in the film is shown sitting in a playground near his inner city home.}

Speaking of community and inclusion (which I talk about a lot on here in relation to people with disabilities), I rented this DVD from Netflix and watched it last night. (This film also airs on PBS - click above for show times and an update on the boys.)

This film features the journey of four inner city kids from Baltimore about to enter seventh grade who are sent to the Baraka school in Kenya to a two year program for intensive educational and therapeutic experience to help them deal with issues holding them back academically.

The filim begins in Baltimore, where each of the boys and their families are introduced. The boys are dealing with parents in jail, on drugs, poverty, poor school systems, racism, violence on the streets and other difficult challenges. They are accepted to the Baraka program and sent to a summer program to get them ready before they are flown to Kenya in September of their seventh grade year of studies.

Upon arrival in Kenya, the students learn that they will be living in a building which only has electricity part of the day. It is a stark contrast to the urban environment they have grown up. Suddenly surrounded by what one boy calls "beautiful" scenery and wild animals that roam freely around the school's environs, one child is shown playing with a hedgehog, fascinated. In this photo, the boys are introduced to an elephant by a local.


These physical changes are only part of the picture - the school has a one to five teacher:student ratio. The boys, used to being lost in large city classes, are suddenly under a microscope. Those with behavioral issues are sent to a time out room or to a mini-survival experience with a counselor. One boy, it is discovered, is reading at a second grade level and yet was never tested for academic problems.

One night the boys are taken to a local church where they participate in a celebration of song and community spirit. Upon their return, the boys tell a teacher how impressed they were by the love they saw between people in Kenya and how they cared about each other even in conditions of poverty worse than they experienced.

The boys are sent home for a three month summer break and their planned return the next September never occurs when the school has to be shut down due to political upheaval and safety concerns in the area. Each boy reacts differently to this news. One boy goes on to excel in eighth grade and gets into Baltmore's best academic high school. Another decides he wants to be a preacher and begins to preach at his church with the support of his family.

Two brothers who went do not fare as well. The older one displays anger, despair and feels betrayed by the discontinuation of the program. He gives up doing his schoolwork in his large city class and fights with his younger brother. Their home life appears to be in worse shape than before. A woman from the Baraka program meets with him and encourages him to go to an automotive program at a vocational high school but he shows no interest.

The film raises the issue of what responsibility communities hold for the people within them and what role neighboring communities can play. As one of the boys asks, why couldn't a school in the surrounding area continue the program to help these boys succeed with them having to go all the way to Kenya? Another boy interviewed in 2006 now points out the need for role models for kids today in inner cities.

Film Factoid: 76% of African American young men never graduate high school.

Disability, Connectedness and Redefining Social Integration -The Need for Community Education

I've linked to a summary of an article last month in a psychiatric journal discussing the connectedness and social integration of people with psychiatric disabilities, emphasizing the need for services to consider this aspect of care and the skills needed by the folks who have psychiatric disabilities.

But what about community education?

Articles like this always get me thinking about the other side of the equation - the obstacles faced by people with disabilities when they try to integrate into society. One of our most vulnerable populations is people with mental health issues. Many of us with disabilities realize from real life experience that having social skills if you are a person with a disability isn't the entire answer. If it was, the solution would be simpler. But we have to be careful not to discount the fact that social integration is dependent on the response of others - and society.

I remember years ago talking to a vet in a wheelchair at a tennis tournament. He had used a wheelchair for over 25 years and I was newly disabled. I explained to him how I was surprised at the social difficulties I was running into in some places and with some people and he replied "Well you're going through shock right now." He went on to explain that it wasn't shock from being disabled, but shock from realizing that the reactions of some people were going to be so different because I was in a wheelchair. I tried to talk him out of that position but he wouldn't budge.

Up to that point, I had blamed myself for every interaction that went wrong. Whenever I ran into a situation where I was excluded, I blamed myself. Then I read a few books about disability studies and began to understand better what that vet was trying to tell me that day - that barriers exist because of attitudes and other factors in our society.

I applaud and support those in the field of disability studies as they strive to introduce a consideration of the societal factors as related to disability into all academic fields. An article such as this , which discusses raising the expectations for integration of people with psychiatric disabilities, calls out for a discussion from those of us advocating for the rights of the disabled about the myriad of factors involved so that we can determine what needs the system can and should address. Some of the services do need to address the skill level of the person with the disability, but some of the services also need to address community education to create a more equal playing field for those who are de-institutionalized and about to enter our communities.

A headline I will not see

{ Headline I Saw: Paris Hilton's jail time cut to 23 days for good behavior} {her "good behavior" described in part by showing up in court- so what's the other part - matching her handbag to her outfit? }

Headline I will not see:

Paris Hilton told good behavior must be earned

Using a wheelchair in Second Life

Over the past year or so I've read a number of articles about the virtual world Second Life. It's a virtual online world - with locations built and maintained by users and its own currency called Lindens. Some locations are cities, some are beachfronts, some are space stations - it runs the gamut.

So the other night I decided to try Second Life. I created an avatar and wandered into the Pier, a nightclub environment near a beach. It was a friendly crowd with good music so I clicked on a dot and my avatar danced a bit. I used the search feature to look for "Live Music" and attended a few concerts where avatars (very talented ones) offered entertainment from bands to solo artists. I found moving around a bit awkward as a newbie and bumped into a few avatars but no bruises or bumps happen in Second Life.

Then I searched under disability and I found Wheelies. Wow. It's a multi level building full of disability art and media. I ran into Simon (click above to read about Simon) who gave me a Wheelies welcome package and in it was a blue aluminum wheelchair. Most excellent! (I also received free t shirts and other useful items to a newbie with no Lindens.)

I went to the top floor using the handy dandy elevator and spent some time under the virtual night sky floating in a tube in the pool at Wheelies. Then I flew around the area a bit (yes you can fly!) and found the whales in the sea near the building. It was fun dipping and diving with them.

The next night I decided to attend a literary reading in another place. Before I went inside, I dragged/dropped the wheelchair (called object) onto my avatar and there I was - in a wheelchair on Second Life. The literary reading was on the third floor of a ramped museum so I rolled up the ramps and rolled into the group. Just like in real life, chairs that were set out for people to sit on blocked my way a bit, so I rolled around them. I was invited to join the group and the discussion which was quite good. Unfortunately I attempted to move my wheelchair halfway through and I rolled backwards off the third floor (the floors were the kind that hang in mid air) and landed on the first floor.

I laughed so hard at my "newbie" move that I was unfit to return to any kind of literary reading. Instead I decided to try out a new venue. I joined in the Monster Mash at a concert and got a free mask. Cool. Then I teleported to another concert. As I landed in my wheelchair, an avatar approached me and asked "Are you disabled in RL?" (RL meaning real life) to which I replied yes. She said "So am I but I choose to enjoy mobility in SL." (Second Life). hmmm. So I replied "Cool." She walked away quickly before I could add anything.

So why do I use a wheelchair for my avatar in Second Life? As Simon from Wheelies puts it:

"The avatar is a powerful device in ensuring an inner self-identity...
So for some disabled people, Second Life is an opportunity to escape from their impairment. Disclosure is optional and this “second life” often suits people who became disabled after birth.
There is, however, a group of disabled people, including myself, who wish to appear disabled within Second Life. ...
Within an environment which is perceived to be barrier free, it challenges the very nature of impairment and disability when someone chooses to appear disabled. ”

I find the world of Second Life to be quite accessible in a wheelchair. It's not that there aren't steps but if you don't mind jostling, your wheelchair just goes right up them. And there's the optional "flying" - when you fly in a wheelchair you certainly do fulfill those fantasies you've had from lack of access!

For me, using a wheelchair has nothing to do with accessibility,however. It's about exercising my choice to enjoy Second Life without feeling like I have to hide my disability and who I am.


Here's a video about Simon's site on Second Life.

Oklahoma chides insurance company for dealings with Medicare recipients

Oklahoma chided Humana for its tactics, among other problems, in selling policies to Medicare recipients from agents who, in some cases, did not even have the proper licenses.

"... documented widespread misconduct by agents working for Humana and has ordered the company to take corrective action to protect consumers against high-pressure sales tactics.

The commissioner, Kim Holland, said some agents had enrolled Medicare recipients in Humana products that “they did not understand and did not want.”

Via NY Times

"An Amputee Sprinter: Is He Disabled or Too Abled?"

An amputee sprinter who has used prosthetics since he was 11 months old wants to make an Olympic bid. His times are not fast enough yet to qualify but he has stated that running in the Olympics is his goal. Authorities are considering his case.

See the post below for my commentary.

Via NY Times

Amputee runner is too 'able bodied'?

[visual description: Oscar Pistorius, who wears two prosthetic legs, beats a competitor in a Paralympic meet.}

First Tatyana McFadden had to file a lawsuit to compete against able bodied runners in her wheelchair at high school events and now an amputee runner is being challenged about competing against able bodied runners in the Olympics because it is felt that his "high tech" prosthetics give him an unfair advantage against mere able bodied mortals.

All kidding aside, I see this as a backlash against disabled athletes who have worked for years to be good at their sport and, well, get better than many able bodied competitors. Take Tatyana, for example. She's already won medals in the Paralympics despite being in high school. So if you put her on a track with high school kids, with her experience and training, it's not the same as a wheelchair athlete who is not as gifted, talented and well practiced and experienced. I play wheelchair sports and know the skill level runs the gamut - as it does with able bodied athletes.

The same is true with amputees. So is the real question being asked: Should athletes with disabilities who can beat able bodied competitors be banned ? Because it's not as if there has been a rush of disabled athletes to sports who have taken over the competitions here. In fact, the amputee runner in question here still has not reached the Olympic qualifying times in his runs - which brings up the question of how much advantage there really is and how much of this is about perception of people with disabilities.

First of all, we're talking about a few very gifted and talented athletes here and, based on the comments I see on the web about both of them, there is a knee jerk reaction along the lines of banning them due to an unfair advantage due to their equipment which they need in order to, well, run.

The first comment (if you click above) talks about how an athlete should remove his limbs to give himself an advantage. That's just mean spirited and ableist to boot. And after following Tatyana's case, I can tell you that many comments made about her fall in the same category. It is one thing to calmly look at whether the hypothesis that athletes with disabilities have an unfair advantage and able bodied runners some kind of, well, accommodation . (Gee how's that for a concept to wrap your mind around?)

It is quite another for people to immediately jump to the conclusion that athletes with disabilities should be banned from participating. Especially in track, there are ways to adjust times to accommodate any real advantage that equipment gives to athletes. But we do have to be careful that the real problem here isn't that of image: that some disabled athletes have become better than able bodied ones.

It reminds me of the day one of my friends watched as I used my voice recognition to do a task on my computer and said "Wow, that works faster than the way I do it and my hands work." After that, she kept telling me over and over how it was great that I could "get my work done faster" than everyone else because of that "advantage". So she went out and bought voice recognition. I received a phone call a month later from her and she said "It didn't work for me the way it does for you." I asked her if she practiced with it and she replied "Oh no I don't have the time. "

I've used voice recognition for many years now and it does work well for me. I've put a lot of work and training into maximizing my skill at it. But I know many quads who don't use it as much as I do and it doesn't work as well for them either. So my 'advantage' was earned.

I wonder how many of the runners that Tatyana competes against would choose to use a wheelchair in their meets because of its advantage - if they were given that option. My guess is they would lack the arm strength and training to beat her even if they used the same equipment she does. That's certainly true of many other athletes in wheelchairs who have raced against Tatyana.

Even those who got to the Paralympics.

And a doctor who has studied the biomechanics of amputee runners has this to say to the IAAF which is questioning Oscar's eligibility for the Olympics: "“I pose a question” for the I.A.A.F., said Robert Gailey, an associate professor of physical therapy at the University of Miami Medical School....“Are they looking at not having an unfair advantage? Or are they discriminating because of the purity of the Olympics, because they don’t want to see a disabled man line up against an able-bodied man for fear that if the person who doesn’t have the perfect body wins, what does that say about the image of man?”

"According to Gailey, a prosthetic leg returns only about 80 percent of the energy absorbed in each stride, while a natural leg returns up to 240 percent, providing much more spring."

“There is no science that he has an advantage, only that he is competing at a disadvantage,” Gailey, who has served as an official in disabled sports, said of Pistorius."

Via NY Times

Oh stop gushing!

Last night around 1:30 a.m. I heard the sound of gushing water.

Odd, I thought. It wasn't raining when I checked before. But I kept working since I'm on deadline and when I'm on deadline and behind I work until 2 a.m. I figured I'd check what was going on in a half hour.

Meanwhile the gushing sound was getting louder. My cat was circling around. The last time I heard such a disturbing water-related sound was when I was staying on the fifth floor of a hotel in San Diego with a seven story level artificial waterfall outside my door during an earthquake. I remember waking up and watching my wheelchair roll across the hotel room out of my reach as the room shook and said to my roomie who was watching hers roll around "What do we do now?"

She said "I vote for going back to sleep" and turned over.

But she wasn't here so I rolled over and opened the front door and looked out. The fire hydrant across the street was gushing water in biblical proportions. It made those pictures of kids playing in the stream of fire hydrants in New York city in the summer look lame. This fire hydrant meant business - it was gushing and spewing water up, down and sideways.

A few minutes later two men and two flashlights showed up. I heard banging. The water stopped. Then the gushing started again. I heard muttering, a few choice words, hammering, creaking and two tiny flashlight beams appeared, were blocked, reappeared in the dark night.

Then, suddenly, it was silent. The men left. I opened the door and looked out at the errant fire hydrant. There it was, surrounded by pools of water. I'd never even looked at that fire hydrant before.

But it sure got everyone's attention tonight. It reminded me of the times I've dealt with people who "gush", those who vent and are seen as "overreacting". It is true that sometimes people do behave unreasonably and out of proportion to what's going on. But there are other times when, like the fire hydrant, something really has gone wrong and the "gushing" is a signal for help.

As I went to bed feeling very tired, it somehow renewed my faith that the work I do is important even if I only do the equivalent of silencing one "gush" in one place by offering help.

"The empath"

I wrote a short story over at A Different Light for Mother's Day 2007 - it's for all those who adopt or raise special needs children. Click above to read it.

Happy Mother's Day to all.

"Clearly, Frankly , Unabashedly Disabled " - Just read the quotes!

Here we go.

I found this article in the NY Times as I sip my coffee from a special adapted mug. On top is a photo of a woman with a prosthetic leg dancing in a club with someone. The article mentions the comedian with CP, Josh Blue. Then it states:

"The public image of people with disabilities has often hinged on the heroic or the tragic. But Mr. Blue, 28, represents the broader portrait of disability now infusing television and film. This new, sometimes confrontational stance reflects the higher expectations among many members of the disabled population that they be treated as people who happen to have a disability, rather than as people defined by disability.

“What we’re seeing is less ‘overcoming’ and more ‘just being,’ ” said Lawrence Carter-Long, the director of advocacy for the Disabilities Network of New York City, which last year started a film series, “disTHIS: Disability Through a Whole New Lens,” celebrating unconventional portrayals of the disabled."

“More people are saying, ‘This is who I am. If you have a problem with it, that’s your problem,’ ” he said.

Via the NY Times

The rest of the article can be read by clicking above. The article left me wishing that the author had used the quotes differently. I could have done without the interspersed unfounded conclusions, but a nice job is done describing the experiences of a woman amputee who talks about going out shopping in shorts "... people gawk and some have even tapped her on the shoulder to ask her to put her leg back on. She said she’s been told, “It is upsetting my child.” But she refuses to hide.“You either accept me as I am,” she said, “or you don’t have to look at it.”

On the other hand, if you read the article through and just read the quotes, it's a very different experience. For example, I like that the article ends with quotes from a woman who says she wears sunglasses when she goes out with her prosthetic leg exposed and compares being stared at to being an animal in the zoo, but then comments on progress and positive changes in people. Both are true simultaneously for me. Every day.

For the most part, I see people with disabilities who are just "being" as Lawrence Carter-Long points out so astutely in his quote above. What changes will that bring? Many. Not only will it change peoples' perception of disability, but those of us with disabilities will put "overcoming" further behind us into the annals of disability history.

And maybe, just maybe, those of us who have been called confrontational because we expect to be treated as people who happen to have a disability, rather than have our disability define us, will live to see it. It's enough for me if my nephew does.

For now, I'm just going to go "be".

Googling Personal Assistant - pay is $100,000 a year?

At fabjob.com, it can be, because they are looking for personal assistants for celebrities.

Tomorrow is Mother's Day and I think it's a really good time for those of us who have personal assistants, family caregivers or generous friends to stop and say thank you - and , more than that, to honor how important they are to us in our lives.

Those of us with disabilities are sometimes called inspirational. But people don't call my personal assistant inspirational - yet she is the one who shows up, does what needs to be done to care for me on a steady basis and makes me comfortable.

What's it like to have a personal assistant? Well it's different for me than an actor or celebrity. I don't ask her to shop for my favorite perfume or makeup (although I could). We're too busy getting the basics done around here - sometimes together. For me as a quadriplegic, my personal assistant is my hands. She opens what I can't, writes what I struggle to, signs, seals and ships things. She zippers, buttons, inserts batteries, cartridges, and sets up new appliances. She changes lightbulbs and litter. She cuts up my food, then cracks a joke. She pets the cat, hugs the cat, then touches my shoulder and looks me in the eye. And that's just on a Wednesday.

"Need anything else?" she asks.

Yeah I do. Today I need to tell you that you are my hero. You are inspirational.

I wish I could write a song or book or become famous - not because I want fame but because I could pay personal assistants better. The least I can do is to show my gratitude to the REAL personal assistants of this world - the ones who do the important work, although society doesn't recognize their worth.

Thank you to my personal assistant, Meredith - for your spiritual generosity , compassion, empathy and kindness. I know you have better things to do- like write books, sign autographs and go on speaking engagements. I admire your spirituality and how you walk the walk and don't just talk the talk in life. You are an inspiration to me.


And, by the way, readers might want to see what Meredith has to say on the subject of caregiving and volunteering in her book: Deliberate Acts of Kindness: Service as a Spiritual Practice by Dr. Meredith Gould. (Two of her other books are to the right on my sidebar and you can find more of her books over at amazon.com - with more books to come.)

"Taking better care of caregivers" - new bill in California

Tomorrow is Mother's Day so this post is dedicated to everyone who is special in someone else's life - someone whose spiritual generosity has touched another. That includes caregivers of all kinds IMHO.

Yet work environments have traditionally not provided protection - and continue to discriminate- against workers such as pregnant women and caregivers. It is being called "Family responsibiilities discrimination" which does not support family values.

"Caregiving discrimination lawsuits have exploded — with plaintiffs often winning...
These laws and other actions are based on an emerging legal doctrine built around the concept of "family responsibilities discrimination." The doctrine is based on evidence that pregnant women and caregivers often are passed over for jobs, dinged on performance reviews or blocked from promotions. Some employers assume they would be absent more frequently and won't work as hard or be as committed to their careers as those without caregiving duties."

One California lawmaker is stepping in with a proposed bill that would assist family caregivers with jobs outside the home extending protection under current job discrimination laws. (Click above to read the entire article).

"For example, federal law requires employers to accommodate the needs of disabled workers and grant employees leave to care for sick or disabled relatives. But no federal statute expressly forbids job discrimination on the basis of an individual's parenting status.
California law expressly bars job discrimination on the basis of sex and marital status, among other factors, but not caregiving.
A bill now before the state Senate amends the Fair Employment and Housing Act, extending that protection to parents and workers with an ill or disabled spouse or aging relatives. SB 836, sponsored by state Sen. Sheila Kuehl (D-Santa Monica), would apply to businesses with five or more employees. It is scheduled for a vote in the Senate Appropriations Committee on Monday."

Via latimes.com

Vocylyzing Inclusion

This video was done by a group of teens who live in Victoria, both with and without disabilities, who meet every two weeks to do activities together. It consists of their thoughts on inclusion and shows them socializing. Toward the end they share their ideas as to how to make their schools more inclusive through accessibility, awareness raising and other means.

I love their message - Inclusion is for everyone.

Medicare anti fraud sweep nets 38 people

Good news- the FBI reports (click above) that folks who have bilked Medicare out of millions of dollars are being caught.

"In one case, a company was developing compounded aerosol medications, a process by which a pharmacist makes medicine to meet a special need for a patient rather than dispensing less expensive commercial pharmaceuticals. The indictments state that the homemade medications were prescribed only to defraud Medicare."

Via www.govhealthit.com

These efforts will help recoup money that could be going toward durable medical equipment for real claims.

Australian blind woman tells press about public misconceptions

Ms Kelly, a mother of nine, has stopped going out with her friends to pubs and night spots because her disability leads to misunderstandings so frequently. Pub owners assume she is drunk when they see her running into things or being assisted by friends who hold her arm. Rather than ask her questions, she is asked to leave.

`They need to check and make sure before assuming people are drunk,'' she said.

``Your eyes may be funny or you may be running into things and laughing with friends, but it doesn't mean you are drunk. It is the other `d` word _ disabled.''

The article also mentions that a 39 year old man who suffers muscular dystrophy goes through the same thing and told the press he is used to being asked to leave pubs and clubs in Darwin.

Via Northern Territory News

Pope canonizes 1st Brazilian saint

{visual description: On his trip to Brazil, Pope Benedict XVI canonized the first Brazilian saint, Friar Galvao in the first canonizatoin ceremony held outside of Rome. He is shown during the ceremony with other clergy members.}


Friar Galvao, who lived from 1739 to 1822, founded monasteries and convents throughout Brazil, including the Monastery of Light.

Catholic Social Justice Teachings

For a list of Catholic Social Justice Teachings, click above. (Posted at reader request).

Darfur

The Save Darfur organization has come up with a wonderful way to connect people who want to help raise awareness and work to help the people of Darfur. If you click above you can enter your zip code and find events near you that you can attend and participate in. After seeing the creative ways people are finding to have events (such as talent shows, film showings, etc.) you might want to run one yourself.

What some people do with fame

Drew Barrymore, the actress known for her many roles since ET as a child, is now an Ambassador for the World Hunger Program. She has been traveling and working with the group, which provides aid through school feeding programs. "Feeding a child at school is such a simple thing to do," she says. And she adds that she's seen what a miracle it is. "School feeding not only fills stomachs, but has a proven track record of boosting enrollment, attendance and academic performance. For just pennies a day per child, this program changes lives – and ultimately can impact the futures of poor countries around the world in a profound way,” she said.

In the above video, Drew talks about the work of WHP. I've put a link on top of this post so people can go over and check out the work this group is doing.

"First Word War"

A short story for children of all ages over at A Different Light about a boy with a learning disability who finds out that reading doesn't have to be a war.

Listen to this!

Over at podiobooks, authors read their books and submit them for free download (donations are encouraged but not required). You can download these books to your ipod or other mp3 player on your own schedule or play them on your computer with a simple click. It even opens in a small separate window so you can keep blogging!

I tried a few titles out from their top ranked list and easily found books I like. If you're like me and always looking for more to read, check it out by clicking on the title of this post!

New to the blogroll: The World....God?....

Every now and then I find a blog that speaks to my heart. This is one over at St Blog's, full of great postings. James describes it as: "News and comments about this crazy mixed-up world and the grace of God. A Secular Franciscan looks at life."

I know that I've just read a great Catholic blog when I find myself praying over a post.

Go on over, visit, and leave a comment.

My achey breaky advocate's heart

Ask me why, in a system that does not require notice, those who are in violation of the ADA react with hostility to attempts to remedy the problems but then claim they are the "victims" and insist that they need a 90 day notice provision for the ADA?

I've never seen such a ridiculous idea in my life. Any notice that I've tried to give under the present act usually results in a temper tantrum, hilarious laughter, or - the most common reaction - it's ignored.

This would all break my heart except that I am an advocate. I've been one for over 20 years. I'm not swayed by tears, insults, fists in the air, banging on furniture, slamming down phones in my ear, nasty letters or potty words. Words and phrases like "entitlement", "aren't other restaurants accessible? go there instead!", "I don't see why your client can't use the toilet down the block", and (my personal fave) "I'm grandfathered into the ADA!" no longer make me even blink an eye.

I could write a country song about how I find all of this unmoving. Like a woman wronged and left with five kids and no child support, I stand (or sit) alone in the face of accusations that I should not speak up about lack of access or accommodations for people with disabilities who want to work, go out in society and lead full and productive lives. The response is: "Sure, but go down the block to do it - go somewhere else."

Years ago I wanted to be a songwriter. I could be cute right now and come up with some country lyrics to illustrate what I mean. But I'm too tired from advocating and I suspect we're all better off if I just leave it up to your imagination what I might write.

Because my achey breaky advocate's heart is not unique. It's shared by all of us who push for the changes we need to achieve inclusion.

"Sick of love? Me too!"

"Is this what we’re about? Cute love? Jesus suffered the whip and died on a cross so that we are free to shoot sugary looks at one another and drip cutesy clichés about warm-fuzzies and teddy-bear hugs? Do I need to go put on the creamy-pink vestments and my Bunny rabbit slippers? No. Thank God and all the Saints…no. ....If you think love is best expressed with chocolates or a Starbuck’s gift card or perhaps you think real love is best signified with a quickie in your dorm room, then you don’t know what love is. Love makes you. Love saves you. Love delivers you to the throne of the Most High! You are not loved b/c you deserve it. You are not saved b/c you’ve earned it. You were not created b/c God needs you. Your being, my being—we exist, gratuitously, without merit or debt b/c our God, in His Goodness, draws us out of nothingness and makes us body and soul. We exist in Love because of Love for Love so that we may return to Love to be Love forever. And this is sometimes a terrible pilgrimage—painful, disillusioning, exhausting and dirty. But, at the end, you will be the newest creature b/c you are now a new creature.
Love perfects the imperfect. It shines up, buffs off, and sharpens. If you will become a well-oiled, surgical tool for God’s Word, you will love. You will speak the truth, spread goodness, honor beauty; you will correct error, confront sin, forgive offenses; and you will build up the Body in service and open the doors of faith to the stranger. Your life in Christ is a gospel epic not a Hallmark poem. Love us as Christ loves us…right to the cross, to the tomb, and on to the Father’s right hand."

Fr. Powell writes a very powerful sermon about love (hat tip to Amy at Open Book for finding this) on his blog (click above for a link to read the entire post).

Disability blog carnival 14 is up!

The topic is "Firsts" and The Gimp Parade is hosting it. I thoroughly enjoyed reading through this carnival which contained not only links to posts but photos of firsts as well.

I've been reading through the posts this morning and the one that struck me was by Wheelchair Dancer, who examines the many ways she has broken new ground personally, in her family and her community as a "woman of disability and colour" in her post First .

Also Kestrell lets us all know that the Journal of Literary Disability has just started (the first of its kind!) Go on over and register at http://www.journalofliterarydisability.com/ for a free subscription.

Click above to go over and check the carnival out -don't miss this one!

And the next disability blog carnival is where, you ask? Submit your blog article to the next edition at Ryn Tales, where the theme is "Disability & Family." for May 24 - submissions are generally due by midnight of the Monday before the Thursday date of the carnival.

Miles' blog: a teen with cancer shares his journey

A teen named Miles who lives in suburban Detroit has a rare form of cancer that has caused him to leave high school. To keep in touch with his teen friends, he began a blog.

The medical news is not good: doctors agree that he's terminal and at best has a few years left.

However the reports on the blogging front are much better. Miles' blog has touched many readers with his daily thoughts and ponderings. It's been a way for him to stay in touch with peers and meet new friends from all over the world. And it's been a way for others to learn the lessons he's sharing from his experiences. And he's scheduled to graduate from high school in June.

To read a CNN article about Miles, click above.

Being real - from the first date through marriage

In this radio interview at Revive Our Hearts, Joni Eareckson Tada*, a quadriplegic, talks about her marriage to her husband Ken, from their first date to the present. She recalls how she was so nervous their first time out at a restaurant that she drank too much water and it filled up her leg bag - so she needed Ken to help her empty it out. Neither wanted to crash into the opposite sex's rest room - so she "watered a bush" outside and emptied the bag there. She recalls how that sense of being real with each other was key and has been key in their marriage.

She also acknowledges the ways she and Ken work out getting their needs met in their marriage. They each have different sources of support and, at times, different friends and outings supplement their lives and help their marriage.

Click above to read the entire interview.

*Joni Eareckson Tada is a world reknown speaker, writer and heads a disability ministry called Joni and Friends.

Civil rights are indeed inconvenient: Ashley X parents respond on their website to WAPS report

The parents of Ashley X disagree on their website that it should be necessary to follow the court-mandated procedure of obtaining approval prior to sterilizing a child with a disability. In their statement they write that they consulted an attorney (whom they refer to only as a "disability lawyer"- not sure if that's true since that specialty doesn't exist in some states but since I don't have a name I can't check) and were told by the "disability lawyer" that the law didn't apply to their daughter. They state that " the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. "

This is an argument that dehumanizes those who are more "severely disabled". Drawing lines like this is the dangerous part of this whole debate - if you take this approach (shudder) at what point does a person with a disability lose his/her civil rights? Unless we're going to argue that civil rights are "silly" and frivolous in general, that's a question that unversally needs to be answered as follows- all human beings are deserving of the same protection and equality. Basing an "entitlement" to protection by somehow reaching a certain standard of functioning negates the entire point of protecting people with disabilities in the first place.

They then state that : "Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s."

Yikes! This is like saying that having to follow any procedure to protect children with disabiltiies or any other vulnerable group is a "burden" (interesting choice of words) and is outweighed by considerations of convenience. The parents of Ashley X and the hospital board did indeed circumvent the law, which the hospital board has admitted and intends to rectify.

The parents of Ashley , on the other hand, seem to see nothing wrong with what they did even in the face of a finding that the procedure was done illegally. In fact they call it a burden and an "undue obstacle" to follow the law. The parents' web site is highly visible as a result of the "debate" (which we now find out was over an illegal procedure) and the parents are still not willing to acknowledge that we live in a society that recognizes the constitutional and common law rights of people with disabilities - including court mandated procedures that were violated with Ashley.

In any case, since their statement has been put out there in the public, it will draw responses like mine. The choice to issue this statement in the face of a finding by the Washington Advocacy and Protection report that it was done illegally, in my opinion, is a continuation of a campaign to promote the "Ashley X treatment" without court approval. Basically the parents should remove the parts of their statement from their web site that encourage illegal behavior - performing procedures by bypassing the laws already in place - by arguing that it is a burden and undue obstacle And we need to consider whether the laws in place are sufficient to protect the rights of disabled people in the face of this kind of response.

We also need to separate out the excuses people use to try to take away the civil rights of disabled people. It is certainly true that parents of children with disabiltiies are a sympathetic group- and rightly so. They are good, well meaning people. However when they break the law or speak out publicly in ways that encourage breaking the law, it is necessary to set aside our sympathy and see their behavior for what it is.

Many who defend the parents' position in this case refuse to see that Ashley X's parents publicized this treatment on a web site, suggesting it would work for other families. Now that a finding has been made that it was done illegally, not only has no deterrent been suggested - such as sanctioning the parties involved, but the parents continue to make arguments that would put the civil rights of disabled children at the mercy of the convenience of everyone else. They criticize the very laws they broke making the same arguments that caused them to break the laws in the first place.

To which I say: Civil rights are indeed inconvenient - to those who seek to violate them.

[A link is provided at the top to the website of Ashley X's parents.}