Stephen Hawking to go on Zero Gravity flight

Date set in April. Speculation exists as to whether this will lead to a space flight, although no physical for one has yet been done according to the article.

Respect is a key concept in accepting differentness.
- Carol Gill

Oh, it'll melt eventually...

[Visual description: Drawing of man holding shovel over his shoulder]

There are many factors that come into play when you use a wheelchair, crutches, walker, cane or scooter to get around. My blind friends tell me that this is a problem to them as well :the failure of businesses to do proper maintenance on accessible areas.

Many people with disabilities go out alone. That number is increasing all the time. This makes it even more important that accessible areas are properly maintained. Our level of independence rests upon this. Those of us who are working, obtaining an education, or simply out enjoying our leisure time rely on ramps, curb cuts, handicapped parking and similar accommodations. These areas need to be shoveled and cleared of ice.

When I went out last week after a storm, my wheelchair became stuck in snow in a handicapped parking spot that was supposed to be shoveled out within 48 hours. It was 72 hours after the storm. I managed to free my wheelchair with the help of a passerby. I then discovered that all of the curbcuts to the building were not shoveled. Piles of snow had been plowed and left there and, due to the cold temperatures, no sign of melting existed.

Did I return home? No. I needed to get inside because I had responsibilities to others who were depending on me, wheelchair or not. But I was late to my meeting even though I went to great lengths to find a way to get into the building. When I later reported it, I was met with the response "Well it will eventually melt."

All of this was a reminder of how far we still have to go in terms of getting proper maintenance on ramps, curbcuts and parking areas. Laws are being passed that mandate snow removal within a certain number of hours, but often they aren't enforced.

I choose to report noncompliance and urge you to do the same when you find it. Find out what the laws are in your area and report businesses that fail to comply.

Being told that it will melt eventually just isn't good enough.

On the issue of newborns with disabilities

A survey reveals that doctors who fear their own death are more likely to end the lives of newborns with disabilities.

"A survey of neonatal specialists in Australia and New Zealand has revealed that nearly one-third would break the law and give high doses of sedatives and painkillers to newborns with disabilities -- with the specific goal of causing them to die."

Via Inclusion Daily Express

NY Times article on parents' right to self represent in case of boy with autism

As justices mull over arguments heard Tuesday, news coverage continues...

List of burn camps

Yesterday I spoke with a 15 year old young lady who is a burn survivor.

As I talked with her, she explained what a wonderful experience she had at a burn camp. I'd never heard of burn camps - as most people, I'm sure, haven't. She explained that when she was struggling to deal with going out in public , she felt safe at burn camp and that helped her in her adjustment.

Please take a moment and click on the link above to read about the many burn camps there are. Usually camp is provided free for these children and they do rely on donations. They also rely on volunteers, OT's , PT's ,nurses, doctors - if you're in a position to help or know someone who is, I can assure you that these camps are a lifeline for these kids.

The sign that we truly have prayed, that we have had an encounter with Christ, is that we are there for others.
-Pope Benedict XVI

Parents of boy with autism fight for right to self represent in court

Via the Washington Post:

"Parents should not be forced to hire a lawyer to sue public school districts over their children's special education needs, the lawyer for parents of an autistic child told the Supreme Court Tuesday."

In the case of Winkelman v. Parma City School District, 05-983, the Winkelmans have spent about $30,000 on lawyers.

The article reads:
"Most federal courts have said parents don't have the right to sue and, if they are not lawyers, cannot represent their children in lawsuits filed under the Individuals With Disabilities in Education Act, the main federal special education law."

The parents do not want their son educated in the public school but in a private school that costs $6000 a year.

{Visual description: Man in wheelchair looks up a flight of stairs from the bottom.}
Access means getting to a place where everybody else gets to, so you don't have to make special calls to warn them of your arrival.
-Itzhak Perlman

dwarfism: USA Today article about acting opportunities

The article reads in part:

"Blacks, Hispanics, Asians, gays and disabled actors continue to break barriers in film and TV. But the approximately 125 short actors who are Screen Actors Guild members say they're usually pigeonholed by producers, directors and screenwriters. And even exceptional roles offer scant career momentum.

Still, times seem to be improving, with diminutive actors receiving high-profile projects and broader, more nuanced roles."

Via USA Today

As for actors with disabilities breaking barriers, I'd say this article is overly optimistic considering this piece on TV Squad stating that there are two new series featuring wheelchair bound actors. (Bound -get out the duct tape -geeze). Not to mention that only one of the actors really is a wheelchair user and has a disability. And that show is entitled "I'm with Stupid".

I just don't see this as breaking barriers. A SAG study from a few years ago agreed. The July 2005 article in the Pittsburgh -Tribune Review states that:
"While 20 percent of all Americans have a physical or mental disability, less than 2 percent of TV show characters display a disability and only one-half percent have speaking roles."

And then there's this dating show for people with disabilities being filmed in the Netherlands. Not sure exactly how they're going to present that, but I did get emailed via the SDS list serv a link to a video clip on CNN about the show which didn't look promising at all.

Blogroll: some long overdue additions

Thanks to my friend Bonnie for typing them in my blogroll for me! I tried a few weeks ago and only managed to accidentally remove a few :( Mea culpa to anyone affected.

My assist cat

[Visual description: Whimsical drawing of a cat sitting on an office chair talking on a phone.]

I'm in the kitchen when I hear it - the sound of my new voice activated phone asking "Name to dial please?"

And then I hear the answer "Meow."

I roll into the other room - my cat Buddy is sitting near the phone, his paw resting near the "On" button, looking down at the phone as it says "I'm sorry but I do not recognize this name" and hangs up.

Buddy raises his paw and brings it down on the "on" button again. The dial tone goes on and the phone asks "Name to dial please?"

"Meow."

"Janet," the phone says and begins to dial one of my friends long distance.

Great. My cat is training the voice recognition on my phone. I shoo him away and go back into the kitchen.

I hear it again. "Name to dial please?"

"Meow."

This time I have no idea who he called, but the phone is madly dialing the digits. I roll back into the room and shoo him away from the phone. He sits on the desk with a satisfied look on his face.

Another assistive device conquered.

Catholic Carnival 108 is up - about Lent

Judith Scott - artist with disability

Judith was born with Down Syndrome and also was Deaf . After spending over 30 years insitutionalized when people failed to realize she was Deaf, her twin Joyce rescued her and took her to California where Judith was enrolled in art classes. She spent ten years creating sculptures before passing away in 2005. Her works are pictured at the link above.

"When what you see is not what you see"

Wheelchair Dancer has an excellent post - a fascinating read - about a pianist with a disability whose body of work turned out to be - plagiarized. WD's commentary on this story is a must read.

Wheelchair stadium seating : Email question

Dear A.M.,
I received your email and I'm posting a picture of what some wheelchair stadium seating may look like. They usually reserve places in front of a rail and you just roll up there and park your wheelchair. The view is good at most places where I've been but, of course, it varies from stadium to stadium a bit. Last time I went to a ball game this able bodied guy kept trying to pretend he was with me because I had a great view from wheelchair seating - so -- my advice is to get tickets , go to the ball game and have a hot dog! By the way, go Phillies!

The Blogging Nun

Sr. Edith, who writes Monastic Musings, was interviewed by the Duluth News Tribune. An article about her is at her post, which is linked above!

The Scooter Police - Of unsolicited advice from strangers and disability

Ever get unsolicited advice? Sure, everyone has.

And it can be really annoying, even when it's well intentioned. Because the truth is that it's unsolicited. The person giving the advice does so without asking or maybe even considering whether you want it - or need it. (Those are two separate issues, but as adults, we have the right to determine whether we want to hear it anyway!)

Before I acquired quadriplegia (ebay Item # 34890), I received some unsolicited advice. It didn't happen frequently and it really wasn't an issue in my life. I would set a boundary and the other person either would or wouldn't back off, but it just didn't occur too often.

However, since I've been disabled, unsolicited advice from relative strangers occurs more frequently. It often comes in the guise of "If I were you, this is how I would handle being a quad". And this coming from people who walk and can move their arms, hands and fingers appears ridiculous to me. Especially when you add the factor that this person may just have met me or only has occasional contact with me and really knows nothing about what my life is about.

Don't get me wrong - it's not that I never need advice. It's just that I have certain people whom I will ask advice of - those I've selected over my years of living. Some of those people are able bodied, so that's not the only criterion I'm using. But certainly they are people who know me intimately.

It's a privacy issue. I don't really want to hear what someone thinks she would do if she was a quad. Nor do I want to hear how she disagrees with the way I handle my disability.

Yesterday a woman approached me in the grocery store while I was shopping. She said "I really think, if I was you, that I would use one of those scooters to shop. Why don't I go with you and we'll get you one?"

Now I can't use a scooter because I don't have the trunk control to sit up in one. Nor can I transfer into one in the first place. I always get a mental picture of myself draped over a grocery scooter cart and someone on the intercom saying "Pickup in aisle three - quadriplegic down."

This is not the first time someone has approached me and told me I should use a scooter. In fact, I call these folks the Scooter Police. I wonder what their deal is - have they raised money to buy these scooters so they want to make sure they're utilized fully? Do they sell these scooters?

My reply to her was a simple "No."

Like others before her, she continued on. She had everything but the Scooter Police badge. "But those scooters are meant for people like you to help you. If I were you, I'd do everything I could to make things easier on myself."

"This is none of your business," I replied, meanwhile trying to decide if I wanted cherry or strawberry yogurt.

When I looked up she had left. Boundary set, encounter over.

And I'm thinking "This is why I use Peapod." But it's interesting, I suppose, to watch able bodied people imagine how they would handle my disability.

I just wish they wouldn't share.

National Down Syndrome Society responds to ACOG's Recommendations for Prenatal Testing with..

two call-to-action points:

-Challenging and strongly encouraging health care professionals and organizations like ACOG to partner with NDSS and other Down syndrome organizations to ensure the wide-spread proliferation of balanced, accurate and up-to-date information to expectant parents; and
-Urging health care professionals, policymakers, and the Down syndrome community to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.

via NDSS website

Tennessee church allows Deaf to feel their faith

This innovative Baptist church not only has sign interpreters for services - the pastor put speakers under the floor so that Deaf members can feel the music.

Via OneNewsNow

If we have no peace, it is because we have forgotten that we belong to each other.
— Mother Teresa

Disabled American Veterans

Click above for a link to the DAV which serves our veterans with disabilities who have served our country.

You guys and gals are in our prayers every day here at Wheelie Catholic .

I've been receiving some email from a few of you vets asking if you have to be Catholic to leave comments here. No, you don't! Everyone is welcome here and your comments will help other people.

I am very happy that I'm hearing from some vets.

It's also okay to ask for help here - many people who have had disabilities a long time read here and might have suggestions or ideas.( I try to be an information and referral source to the best of my ability.)

Thanks for stopping by - feel free to come back as often as you'd like.

On disability pride

[Photo description: View of back of woman in power wheelchair with a sign reading 'Disabled and Proud' that is decorated with flowers. In the background is a crowd of people, including another woman in a manual wheelchair and a number of people walking on foot.]

"You have an important contribution to make to this society. You are in a position to teach that focusing exclusively on narrow standards of physical beauty, youth, and conventional athleticism is a problem for all of us. By continuing to demonstrate that you are not looking to be cared for, but to be treated as a whole, self-determining person with the right to make your own decisions and have a full life, society gets the chance to develop values that respect everyone."

Gary Karp, author of Life on Wheels

Judging Million Dollar Baby

Yes, it's that time of year again - Oscar time. So why not put up my article with my take about Clint's movie on assisted suicide ...for quads....

Diane Coleman's Senate testimony on the Consequences of Legalized Assisted Suicide and Euthanasia

Via Not Dead Yet

In case you're wondering why Wheelie Catholic keeps track of assisted suicide legislation - this is testimony given by the President of Not Dead Yet, who is also a lawyer, before the Senate.

She discusses the issues of assistive suicide and "right to die" in her own life. Her parents were told when she was 6 years old that she would not live past the age of 12 due to a neuromuscular disorder. Her diagnosis changed a few years later along with her life expectancy. She spoke eloquently about how friends of hers who did not use nighttime ventilators due to being discouraged by doctors and died. She is concerned about what will happen in a hospital with her health care proxy due to her disability.

She stated that federal court review and protection is necessary where life support is removed from someone is incapacitated. She goes on to say: "I’m also sick and tired of our allies on this issue, often our conservative opponents on other issues, who see assisted suicide and euthanasia as violating their principles, but see no contradiction as they slash budgets for the health care we need to survive."

Diane also stated: "Disability groups, however, object to the implicit claim that any of us need to die to have dignity. Needing help in dressing, bathing and other intimate daily tasks does not rob a person of autonomy and dignity. Unfortunately, popular culture has done virtually nothing to educate the public about how people with severe disabilities actually live autonomous and dignified lives. Our lives are portrayed as tragedies or sensationalized as heroism, but the real life issues and coping styles that most people will need if they live long enough are left out of the picture. No wonder people who acquire disabilities so often see death as the only viable solution. "

For more, click above to read the transcript.

Vermont Legislature Begins Debate on Legalizing Assisted Suicide

"Advocates for the disabled have been among the strongest objectors, led by the Vermont Coalition for Disability Rights.

“This bill is an insurance bill to protect doctors and insurance companies from any responsibilities if a ‘request’ for physician assisted suicide goes wrong,” the Coalition’s legislative branch said in a statement.

Language issues remain a key factor in the suicide debate, with assisted suicide activists steering clear of using the term “suicide” in an effort to increase public support for the practice. While “assisted death” or “death with dignity” have been favorite substitute terms among euthanasia proponents, activists in the Vermont debate have retreated even farther from the term “suicide”, substituting the phrase, “Patient choice and control at end of life.”

Vermont Gov. Jim Douglas said while he supported the concept of death with dignity, he was opposed to doctor-assisted suicide."


Via Life News

Whenever they start spouting about death with dignity, those of us with disabilities need to pay attention.

Hawaii recently struck down similar legislation.

Movie review: Emmanuel's Gift

Recommend this movie. It's about one disabled man's efforts in Ghana to change perceptions about people with disabilities.

In Ghana, 10 per cent of the population is disabled, but due to the fact that people believe disability is a punishment from a deity, people with disabilities are destined to beg in the streets. Emmanuel's father abandons the family when he is born with a shortened leg, but his mother encourages him to go to school and work.

After her death, the youth is determined to better things for others. What begins with a bike ride across the country to prove that stereotypes about pwd are wrong ends with Emmanuel receiving a prosthetic leg in the US. He then returns to Ghana with grant money - which allows him to better conditions for others with disabilities. The money is used toward wheelchairs and education of kids with disabilities. Emmanuel also leads the effort toward the passage of a Disability Bill in Ghana.

This documentary runs 1 hour and 20 minutes. It contains subtitles in parts.

Is *my * parish inclusive?

This is the most frequently asked question I get in my mailbox. People with and without disabilities ask me this all of the time. So let me answer it here on the blog (and then I can refer people to this post)!

Yes, my parish, St. Charles Borromeo in Skillman NJ, is inclusive.

I'll tell you why.

-I have opportunities to fully participate as a parishioner in all activities and volunteer opportunities.
-Mutual communication exists about any needs for accommodations for my disability. This extends well beyond obvious issues such as a ramp or parking spaces (although those are important) and is addressed on a personal level in a respectful way.
-Our pastor, Msgr. Malovetz, promotes a welcoming atmosphere with an emphasis on community and inclusion
-The pastoral council and parish staff are individually and, as a group, receptive to suggestions regarding plans for inclusion and willing to discuss ways to implement them
-There is a recognition that inclusion is a two way street .
-Inclusion is treated as a spiritual right in our community, not to be withheld from people who are excluded in society
-Social outreach extends far beyond a mere greeting at Mass on Sunday - our clergy and laity are active in many areas of service work and attend to both spiritual and practical needs of others
-Inclusion is practiced as part of our faith life and the teachings of the Catholic church

When you drive up to our church, there is a sign proclaiming that we are a Catholic community. I get tears in my eyes whenever I see it because I spent years looking for a church community that would be receptive to not only my needs, but allow me to use my gifts and talents.

So the answer is - yes, my parish is inclusive. And yours can be too. If it is, that's wonderful. If it isn't, there are ways to work toward that - together - in an atmosphere of mutual respect.

It's been a wonderful journey, but not always an easy one. That's because inclusion takes work - facing attitudes and obstacles and barriers that perhaps people do not even realize exist.

I am happy to extend any help I can to clergy, laity or people with disabilities, their parents, friends or family to make that journey toward inclusion a positive and faith filled one.

[This is a repost in response to questions I receive in email. ]

What's a quadriplegic?

A quadriplegic is a person with a spinal cord injury that affects all four limbs, whereas a paraplegic has an injury that affects the lower limbs. That's an in a nutshell description. Basically spinal cord injuries vary a great deal because the spinal cord is long and injury can occur at any point on it. Injuries at the cervical level usually result in quadriplegia .

Spinal cord injuries may affect trunk control, bladder function, respiratory function and heat/temperature control, among other things. They may result in loss of sensation or function - or both. Injuries can also be complete or incomplete which causes variations.

Confused yet? Well, there are alot of variations from person to person as you can see.

So here's a link to spinal cord 101 with more specific information.

[This is a repost from September 2006 in response to email requests]

Back in the News: High school wheelchair athlete fights to compete against able bodied runners

[Visual description: Wheelchair athlete McFadden is seen racing on a track in her adapted racing wheelchair.]

From Sports Illustrated:

A female Paralympic medalist with spina bifida, Tatyana McFadden, faced opposition against participating in track events at her high school in Columbia, Maryland based on safety fears and the fear that she has an unfair advantage.

For the last year, she has waged legal action for the right to compete in high school sports, suing in federal court. She was allowed to race last spring. The county has backed off on the lawsuit. Yet there is another setback: the state ruled this month that wheelchair athletes were not eligible to earn points for their teams if they raced.

McFadden states that she wants to belong to a team and her biggest thrill was riding on the team bus with other athletes.Tatyana is quoted as saying "The big issue is that nobody has had to deal with this before."

Tatyana, who was adopted from a Russian orphanage by American parents, has competed in wheelchair sports since around the age of seven.

Tatyana McFadden 's photo appears in the magazine with the caption underneath "Wheel life- State officials say McFadden's chair gives her an unfair advantage".

For love is the life of the soul.
– St. Francis de Sales

Known for his gentle nature, St. Francis de Sales said he spent 20 years overcoming his bad temper. Although his parents wanted him to be a lawyer and he did take a seat in the Senate, he followed his calling and became a priest and, eventually, a bishop.

He wrote the Introduction to the Devout Life and A Treatise on the Love of God and many pamphlets. He has been named patron of the Catholic Press.

"Disabled newborns likely to face death"

"The Royal College of Obstetricians and Gynecologists, a leading British medical college, has called on the health profession to debate openly the active euthanasia of seriously disabled newborns, and the Church of England supports it. The college believes the emotional and financial burden placed on parents of disabled children is a valid reason to consider the "mercy killings.
...
John Wyatt, a consultant neonatalologist at University College London hospital, said: "Once you introduce the possibility of intentional killing into medical practice, you change the fundamental nature of medicine."


Via OneNewsNow

Homeless man with mental illness spends 17 months in jail - for allegedly stealing a soda

[Visual description: This is a photo of the top of an open can of soda.]

Jail officials in Indiana stated that they thought the man had been released, so when a psychiatrist came to interview him, the doctor was told the man was no longer there. He was sent to a mental health facility on February 7 when the mistake was discovered by a new warden who was reviewing all of the inmates' files.

Via FoxNews

Martin's Answer to the Ashley Treatment

A blog begun by a parent of a child with a disability . It reads:

"Our intent is show that extreme measures are not an option. Our child's name is Martin and he has disabilities as severe, if not more so, than Ashley. Martin lives at home, is growing to a normal size and stature, and he will continue to do so without medical intervention to stunt his growth."

and describes the meeting with the AMA this week.

"Inspiring the Doll Car Lady"

Via Title Varies Slightly -

This is a great story by another Catholic with a disability who writes about being called an inspiration..by a woman known as the Doll Car Lady. Check it out by clicking above.

Who loves you baby?

SBS - what is it?

Shaken Baby Syndrome - which can result in death or serious injury to infants, including brain and spinal injuries - can be prevented.

I've met two folks in wheelchairs over the past decade who were shaken as babies. One is paralyzed, the other sustained a severe brain injury.

It's hard to talk about things like this , especially since 50% of the cases result from the actions of family members. Sometimes it's a babysitter. But prevention can be addressed through education. These injuries, sadly, do not have to happen.

Take a moment and click on the above link.

Who loves you baby? We all do.

Circus - for everyone!

[Visual description: Illustration of a striped circus tent with the words 'Big Top Circus' on a banner across it.]

Received this via the inclusive ministry list serv - a link to Circus of the Senses, which opens the experience of going to a circus to children who are blind, deaf or have other disabilities. Big Apple Circus also has a webpage with lots more info to bring the Circus to All!

on the radio...

Had fun with my interview on The Catholic Guy, Lino Rulli. We talked about the blog and the post Inspiration NOT.

Received emails from folks who do not have Sirius and couldn't listen so I figured I'd do a short post. But getting back to Inspiration NOT...

A lot of discussion has happened about that post - on the blog, off the blog. Sr. Edith's post on the subject made me realize that able bodied people can get it - and certainly listen to what we are saying as people with disabilities. I liked her point about how, in an inclusive world, we could talk about being inspirational in a very different way.

It can sound like a contradiction to say we do not want to be called "inspirational", but as I said on the interview, we certainly do not want that term used when we do ordinary things- just because we are disabled. I believe the "p" word (patronizing) came out of my mouth. In any event, it's what I think when someone tells me I'm courageous to be at the mall in my wheelchair.

Although around Christmas, EVERYONE is courageous to be at the mall.

Lino is a great guy - very funny and he's one of those special folks who like people and enjoy them.

Special. That's another word we need to talk about...

Extraordinary Everyday Lives

Want to hear about the Extraordinary Everyday Lives of others with disabilities? Dave at lifekludger offers this podcast.

UPDATE: Dave stopped by and pointed out that: " the podcast doesn't just focus on pwd [ people with disabilities]. Though of course I do have a keen eye-out in that direction."


Oops. Thanks, Dave, for the clarification - I will tell you that the list of interviewees looks extremely interesting to me - a range of topics.

Active Futures program...

Mountaineer in Scotland starts sport program

for youths with disabilities

Ashley Treatment- John Hockenberry weighs in on his blog...

in a post -Ashley X: straight on till mourning.

Disability blog carnival 9 is up!

Can you believe we're on the 9th one already? I enjoy them so much that I admit I was surprised when I saw the number 9.

This time Mark over at the 19th floor hosts a great variety of posts, bloggers old and new. Check them out!

"Life Lessons"

David, over at Growing Up with a Disability, writes in his post Life Lessons:

"What I am learning and I find intriguing is that it is very liberating to not be caught up in trying to be defined by society. Because of my cerebral palsy, I am already perceived as “different”, so I am more easily able to see that there is no obligation to conform. I have the freedom to pursue my values without the burden of conformity. I think this is a common realization among the people that I have met with disabilities and among the bloggers I read."

I think it's time his blog;'s name was changed to "Grown Up - with a Disability"

I'm Sirius...

Wheelie Catholic will be on the Catholic Channel (Channel 159) of Sirius radio at 5 pm EST today. I'll be talking with the Catholic Guy about my blog.

National Catholic Partnership on Disability posts disability ministries...

...in dioceses and parishes as available.

Disability ministries are growing in parishes and dioceses, but more service work is needed in this area. If you are interested, feel free to contact me for other resources.

Stella Borealiis Catholic Roundtable: New to the blogroll

This site has lots of great information on Lent - and other issues - with a variety of writers. I reallly enjoyed the time I spent over there this morning - and learned some things too. Always a good thing.

The site gathers information about the Catholic churches in Minnesota - I found much over there of interest to all of us. They've put together great resources!

OTOH - bionic woman? Please!

[Visual description: Photo of the prosthetic arm showing the woman's back and shoulder to which it is attached. From the shoulder area to the elbow the metal pieces and wiring is visible and from the elbow to the hand there is a plastic overlay that is flesh colored and ends in a hand.]

I just finished watching NBC coverage of a piece about a woman who lost her arm in a motorcycle accident and received a prosthetic arm.

The piece opened up with cheap clips from movies about "bionic" characters - man versus machine comments and science fiction versus fact kept flashing across the screen.

Then they switched to an interview by Matt Lauer of the woman with the prosthetic arm and her doctor. The woman demonstrated the use of the arm. She was well spoken and intelligent.

During the interview, Matt Lauer kept trying to steer the doctor away from discussing how the arm worked to the use of this technology in more sensational ways. Luckily the doctor steered the discussion back to the use of this technology to help those who've lost limbs and refused to cater to the sensational approach the show was using. (The woman with the prosthetic arm was standing right there and she did a fabulous job of explaining how it worked. She conducted herself with a great deal of dignity and did not thwap anyone on the head).

I can just imagine amputees wanting to just come forward now if the introduction is going to be bionic man- bionic woman - NOT. What about a teen amputee watching this in hopes of getting such an arm? What's going through his or her mind seeing this type of coverage?

It reminded me of a carnival sideshow - just updated.

"Living with autism in a world made for others"

Via CNN

An article by CNN discusses Dr. Sanjay Gupta's interview and piece on Amanda which began last night at 10pm and continues tonight. Amanda, who authors the blog ballastexistenz, is recognized in the disability community as an advocate.

I was particularly glad to see that they left her comments in about how she feels young people with autism should be around adults with autism. She has much to say that can help our society learn how to converge the needs - and talents - of people with disabilities with others.

What is Access versus Inclusion?

Access to our churches is about overcoming structural and communication barriers. It allows a person with a disability to physically "get to Mass" . It may mean installing a ramp, having materials available in Braille, or arranging for an interpreter for deaf parishioners. It may be something as simple as a different seating arrangement, so a parishioner in a wheelchair can sit near familiy or friends.

Inclusion, on the other hand, is about making each person feel like a valued member of the community. At its core is the teaching that each person is created in the image of God and has gifts and talents to offer to a congregation. Being sensitive and acting in a way not to exclude those who are different , even if it's not intended, can take time, education and awareness.

The reality is that physical access is much easier to achieve than inclusion, simply because it can be planned out step by step. A parish can set aside funds and time to build a ramp or make a bathroom accessible. When the renovation is finished, physical access has been achieved.

But inclusion is not as tangible and therefore more difficult to achieve. It is important to stress, as a Catholic with a disability, that it is a two way street. People with disabilities who have gifts and talents to offer need to participate in their parishes and "show up". This may feel intimidating to some, but change will only come about through those who do so. Parishioners who are disabled need to be willing to invest their time and energy as volunteers for their parish - just like anyone else.

Other parishioners can help by keeping an open mind about including a parishioner with a disability as a volunteer or committee member. People may be used to thinking of folks with disabilities as helpless or unable to contribute - at least until they work with and have a positive experience with a blind parishioner, for example, who sings in the choir or acts as lector. Not only will parishioners realize that the blind parishioner is just as capable at these tasks as sighted people, but such interaction will reveal more common grounds than differences.

Why is inclusion so important to our Church? Because it affects not only parishioners who are in our parishes, but those who do not come because they are afraid they won't be welcomed. As technology and equipment has improved, people with disabilities who used to be marginalized in society no longer need to be.

Those of us with disabilities who can participate need to do so, to pave the way for others, including the next generation.

We Catholics believe in the sanctity and dignity of every human life and , by practicing inclusion of people with disabilities, we can turn our parish communities into living examples of our beliefs.


*{I am reposting this due to the number of questions I've received. This post is from August 2006}

"Wheelchair Idol" - it's that time of year again....

Via Wheelchair Junkie, a parody on American Idol.

Ash Wednesday

Visual description: Drawing of a person's forehead with ashes upon it in the sign of a cross.

“Teach us to number our days aright,
that we may gain wisdom of heart.”

+ +



"The Cross is the definitive revelation of love and divine mercy, also for us, men and women of our time too often distracted by worldly and momentary concerns and interests. God is love and His love is the secret of our happiness. To enter into this mystery of love there is no other way than that of losing ourselves, giving ourselves, the way of the Cross.

....

For this reason the liturgy of Lent invites us ... to reject sin and evil, and overcome selfishness and indifference, Prayer, fasting, penance and works of charity towards our brothers and sisters thus become spiritual paths to follow in order to return to God."

Pope Benedict XVI

Epilepsy Tool Kit for Parents of Teens with Epilepsy: "You are Not Alone"

Via the Special Education Law Blog

Catholic Carnival 107: Divine Therapy

Emotional and social aspects of Epilepsy in Children and Teens

Epilepsy is the most common neurological disorder in kids. Take a few minutes to read the above article and learn about it - and expand the circle of support for these kids.

"Battling Epilepsy and Its Stigma"

An article in the NY Times discusses the effects of epilepsy on a young girl and her parents.

One factor is the social isolation that results due to peoples' fears - the lack of invitations and concerns about being around someone who might have a seizure since people lack awareness about the disorder.

Click above to read the full article.

The Wish List at bookshare.org

bookshare.org is an online organization that provides books for folks with visual and physical impairments. Volunteers scan books which are then read via software by readers.

bookshare has a wish list, which I've linked above. If you're interested in scanning books and volunteering for this great organization to increase the number of available books, please let them know! You'd really be helping a lot of people (and maybe I could find some Catholic books I've been wanting to read !)

The Catholic Passion: Rediscovering the Power and Beauty of the Faith

...an article by David Scott over at Godspy (author of book of same title).

On the eve of Ash Wednesday and the beginning of Lent, I found this gem of an article over at Godspy. How wonderful it was to spend some time mulling over it, reconnecting with some basic faith tenets.

"Did God Find You Today?"

..a new blog by Fr. Ben Hawley, SJ. Click above to go over there - well worth it.

Sonja Peters retires from wheelchair tennis

Photo description: Sonja Peters is preparing to hit a tennis ball from her tennis wheelchair at a tournament.


After she completed her studies in neurophysiology at the Free University of Amsterdam in 2005, Sonja begin seeking a job for her career in that field and has decided to pursue that career full time.

She has had a brilliant wheelchair tennis run. From the Wheelchair ezine newsletter:

"She started playing wheelchair tennis at the age of seventeen. Two years later she played her first international tournaments and then climbed rapidly to the world top. Since 1998 her position on the world-ranking list in the singles has fluctuated between third and sixth place, with a second spot as the highest ranking in 2003. In the doubles category, Sonja and Esther Vergeer was an invincible couple for many years and Sonja even ranked world’s number one for a short while. Sonja won the most important Grand Slams in wheelchair tennis (the British Open and the US Open) and many other tournaments too. The absolute highlight of Sonja’s career came in 2004 at the Paralympics in Athens, where she won a Silver Medal. That year she also ended No. 3 in the world ranking in both the singles and doubles categories. Looking back, that was also the end of her busy life as a tennis player, because from then on she concentrated on completing her studies and building another life for herself."

We all wish Sonja the best in her future career as she works with children who have autism and learning difficulties. Having met her, I know she will bring the same fervor and class to her new career that she always brought to tennis.

"

It's not the disability but the response that matters

"Disability isn't primarily about the physical, mental or intellectual impairments that are associated with it, but about society's response to them"
from Stuff Pity

Some people may not be aware that there is an area of studies offered in colleges called Disability Studies. There are an increasingly large number of blogs to read written by people in this field and I highly recommend Planet of the Blind and DisStudies at Temple U, which are in my blogroll.

I am an advocate. I've helped people with disabilities and their families for years who face discrimination and barriers that simply don't exist for others. From parents struggling with IEP programs for their children to blind people who are denied access to places because of their guide dog - on and on and on, I've pretty much seen it all over the years.

Yet I can only speak of my own experiences. This is, in my opinion, limited compared to someone who has been disabled all of their lives. Out of respect to my friends with disabilities, both the ones I now have and someday will have, I acknowledge this reality.

Yet I feel compelled to speak out in general here and state that in my experience after meeting and knowing many people with disabilities, it is not the disability that matters as much as the response to it. I do not inherently find my disability by itself a problem or an issue, but I do find the barriers that exist "out there" in society a problem. I find the attitudes "out there" to be a problem. And I find exclusion to be a problem.

I can assess my physical needs and get equipment I need to address those. But I can't change an employer's attitude about hiring a person with a disability. And, although the American with Disabilities Act has helped to a point, legislation is not the entire answer. It leaves gaps, not just because it may be written incorrectly, but because laws only go so far to change behavior.

And the laws only address certain situations. The rest of it often relies on peoples' attitudes, beliefs and experiences. Many people are open to hearing what those of us in the disability community have to say. Even though they haven't experienced living with a disability, they listen to us and read what we write . I know this because of the number of emails I receive from able bodied people each week.

And so, with communication, change happens. When we speak up, we not only let people know about our life experiences, but we demonstrate a basic trust and respect in and for others- that their response matters and , together, we can achieve inclusion.

Ultimately, America's answer to the intolerant man is diversity, the very diversity which our heritage of religious freedom has inspired.
Robert Kennedy

Snooze and lose....

...your alarm clock that is.

lifekludger found this interesting alarm clock - it allows you to hit the snooze button once, but after that it takes off across the room, forcing you to chase it around to turn it off (thus waking you up).

Assistive technology? Maybe not, but it might help my cat lose weight.

The Tim Krahling story

I received a link to this article from a reader about Tim Krahling, who was born with severe spina bifida about 20 years ago. At the time of Tim's birth, there was a court fight about him . Eventually he was adopted and received surgery.

If you're interested, the article documents much of Tim's story - how he wound up with two sets of parents, biological and adoptive, and the efforts made to save his life.

Now Tim is a young man . In this narrated slideshow, you can meet Tim and hear his story.

Is *my* parish inclusive?

This is the most frequently asked question I get in my mailbox. People with and without disabilities ask me this all of the time. So let me answer it here on the blog (and then I can refer people to this post)!

Yes, my parish, St. Charles Borromeo in Skillman NJ, is inclusive.

I'll tell you why.

-I have opportunities to fully participate as a parishioner in all activities and volunteer opportunities.
-Mutual communication exists about any needs for accommodations for my disability. This extends well beyond obvious issues such as a ramp or parking spaces (although those are important) and is addressed on a personal level in a respectful way.
-Our pastor, Msgr. Malovetz, promotes a welcoming atmosphere with an emphasis on community and inclusion
-The pastoral council and parish staff are individually and, as a group, receptive to suggestions regarding plans for inclusion and willing to discuss ways to implement them
-There is a recognition that inclusion is a two way street .
-Inclusion is treated as a spiritual right in our community, not to be withheld from people who are excluded in society
-Social outreach extends far beyond a mere greeting at Mass on Sunday - our clergy and laity are active in many areas of service work and attend to both spiritual and practical needs of others
-Inclusion is practiced as part of our faith life and the teachings of the Catholic church

When you drive up to our church, there is a sign proclaiming that we are a Catholic community. I get tears in my eyes whenever I see it because I spent years looking for a church community that would be receptive to not only my needs, but allow me to use my gifts and talents.

So the answer is - yes, my parish is inclusive. And yours can be too. If it is, that's wonderful. If it isn't, there are ways to work toward that - together - in an atmosphere of mutual respect.

It's been a wonderful journey, but not always an easy one. That's because inclusion takes work - facing attitudes and obstacles and barriers that perhaps people do not even realize exist.

I am happy to extend any help I can to clergy, laity or people with disabilities, their parents, friends or family to make that journey toward inclusion a positive and faith filled one.

Inspirational - NOT

I, like many others in the disability community, want to dispel the myth that people with disabilities are somehow inspirational. That is simply not true. We are no different than anyone else.

I've seen many discussions in the disability blog community about the young autistic man who shot a basket in a game and called himself a "hero." At Whose Planet is it Anyway, people are concerned that he is buying into the myth of being an inspiration because he plays basketball and has autism. They point out that this does not make him a hero. There are those who would turn him into one and define him as one - but then what does this do to his life? How does this promote one's inclusion - or one's sense of onseself - if one is defined as an inspiration?

Much of my energy is devoted toward inclusion. I write, I speak, I email, I blog and ultimately I advocate for people with disabilities so that our lives can be productive and full. Whether I am trying to help someone find a job - or meals - I grapple with issues such as the role of our communities - and our churches - in the scheme of these things. Why are there people with disabilities who are willing to work and qualified, but cannot get jobs? Why are there people with disabilities who need to rent an apartment but cannot find accessible housing? Why do we even have to talk about inclusion - and work toward it? Why is it such a struggle ?

I believe, for the most part, it is because people with disabilities are still seen as "the other". The myth of being an inspiration is dangerous because it adds to this problem. When a person with a disability is called inspirational, a wall has just been put up that's another barrier to inclusion. It makes it too easy to write a newspaper article about them - and compartmentalize their existence.

It also can constrict a person's choices. What are an "inspirational person's" choices? How can you live like that? Real life is not a media appearance. Do you go to a bbq and talk about your fifteen minutes of fame to someone and then retreat into that role? It's just not conducive, in any way, shape or form, to being a part of community at large.

In fact, as the discussion above shows, being an "inspiration" alienates one not only from the able bodied, but from people with disabilities who know that they are not inspirational.

One sister's story - living with autistic brothers

An article appeared in the NY Times entitled "Her Autistic Brothers". It's about a 14 year old girl and her twin 16 year old brothers - and how one sibling of autistic kids fares.

New on blogroll: National Dissemination Center for Children with Disabilities

For Parents, Educators and Others:

This valuable nationwide resource contains information on:

-disabilities in infants, toddlers, children, and youth,
-IDEA, which is the law authorizing special education,
-No Child Left Behind (as it relates to children with disabilities), and
-research-based information on effective educational practices.

You may communicate with them in English or Spanish, via their email or 800 number.

Sr. Rose's Passion: Movie review

This short (39 minute) 2004 documentary is about the work of Sr. Rose Thering, a Dominican nun and crusader who devoted herself to fighting anti-Semitism. She addressed anti-Semitic references in Catholic books and having them removed. As the years went on, she served in other capacities, including speaking to interfaith groups. She was Professor Emeritus at Seton Hall before her death in 2006.

This film received an Oscar Nomination for Best Documentary.

It's downright crippling....

I've been watching TV for ten minutes now. In that time I've heard Newt Gingrich use the word "crippling" (in the context of the Iraq war) and Condoleeza Rice use the word "disabling" (in the context of North Korea) in negative ways.

These words are jumping out at me from the screen. I've become more aware recently of the power of the language we use. It maintains the status quo, it reaffirms our assumptions and it also is evidence of our mindsets - positive or negative.

I've heard the word "cripple" (and its variations "crippled" "crippling") a lot lately. And some people might dismiss what I'm writing as a semantic discussion - and even tell me I should get out more.

But the reason it bothers me is what this use of language leads to. The negative connotations are bad enough. But it leads to direct usage at us.

Yesterday I was in Target. I passed a female shopper with a preschool daughter. The child pointed at me in my wheelchair and asked her mother "What's wrong with her?"

Her mother replied "She's a cripple."

"What's a cripple?" the kid asked.

OK. Stop the camera. My stomach is churning with anger . I'm getting ready to use my gross motor movement in a negative way. I look right at the mother, who avoids eye contact with me.

She replies "A cripple is someone who is different from us."

"Excuse me," I piped up.

"Hi," the kid said.

"Hi," I replied. "May I make a suggestion?" I asked the mother.

The mother was looking at me with outright shock. For all I know she was thinking "It speaks". "What?" she asked me.

I took her out of earshot of the kid and said "The word cripple offends me. Calling us people with disabilities is really better."

"OK," she said uncertainly. Then she added "I didn't know you could hear me."

Whenever we use language in a negative or derogatory way, people hear us. In this instance, I was more concerned that her daughter heard her - and I told her that. The truth is, we never know who overhears us.

And another thing - people with disabilities are not different from anyone else. But that's for another day.

No one wanted these kids....

Last night before I went to bed, I visited Planet of the Blind during my "blog rounds". Connie had posted about the case of the disabled children caged by their foster parents. She commented that she was surprised that there wasn't more chatter in the disability bloggers community about the case .

Then I went over to David's blog , Growing Up with a Disability, and noticed there was Connie in the comments section, discussing the case again.

I wanted to blog about it. I really did. I sat here for an hour. I watched videos online. I read some more news. I read some more blogs.

And I couldn't do it.

Today I went over to Planet of the Blind and Steve posted about it. He writes:

"People with and without disabilities should be up in arms about this story. But being up in arms requires that we repudiate the past twenty seven years of social policy. That's harder than asserting that the medical ethicists who were associated with the "Pillow Angel" case were basically forgetting the first rule of medicine which is of course, "to do no harm"." (via Planet of the Blind)

He's right, of course. When Ashley X hit the news, I was able to blog about it. But with this case, I'm sitting here mute. It takes alot to shut me up.

Why is this so hard? I think Steve hit the nail on the head.

Social policy is so ingrained regarding the treatment of those with disabilities that it's not only part of a system of assumptions widely held, but it's become a class and caste system. I know and feel this unconsciously - and consciously -every time I use a social service. My "role" within this social service system is well defined and when I step out of it, (which I often do) I am told about it. I enter a class and caste system when I accept social services. I hate that the social system presently defines me as "lesser than" those who extend the help to me.

If I feel that vulnerable, God help the children with disabilities in the system.

So what do we learn from this? Tacit acceptance on any level of the system as it is makes me - and all of us - a part of the problem.

What were we to do? asked the foster parents . No one wanted these kids. We gave them a home. The cages were necessary for this reason or that reason.

That comes from a class/caste system. How on earth were they doing these kids a favor by treating them abusively? In what barbarous society can neglect constitute care?

When testimony at the trial by caseworkers reveals that they knew about the caging and some thought it improved the childrens' behavior, how can we deny that the problem stems from our social system?

Neglect is rampant all over our social system for both kids and adults with disabilities. It flourishes in a society where we've defined those with disabilities as unwanted. It flourishes in a society where we demand that children with disabilities be grateful to have a "home" no matter how they are treated . It flourishes in a society when adults with disabilities are punished by receiving diminished benefits or threatened with loss of benefits when they speak up about inadequate care.

What does "it" look like every day?

- When we are given substandard meals in social programs and told to "be grateful you have something to eat"
-When we ask for more hours of caregiver assistance and are threatened with institutionalization if we "cannot manage by ourselves"
-When children with disabilities are left in abusive and neglectful homes and visiting workers ignore what they see
-When we are denied technology or devices we need to stay in our homes and/or work
-When we are told we are being "unrealistic" about wanting to work with our level of disability
-When we are unable to go to college, not because we do not meet the entrance requirements, but because there are inadequate services and assistance for the disabled
-When we are sent to nursing homes and other institutions against our will


And it looks like this - little faces staring out of bars, innocent and vulnerable children unable to speak for themselves.

Catholic blog Awards Winners & Runner ups ...

...listed over at Some Have Hats by Karen.

Thanks to everyone who visited during the voting period! Congrats to the winners for their well deserved awards.

The Special Needs Awareness Project...

..is an organization with a very active membership. Their website reads:

"Our purpose is to help promote the academic and social success of children with disabilities so that they can reach their fullest potential in the most inclusive setting."

They offer online resources, a message board and updates on their activities and community involvement. Go over and visit- and be prepared to spend some time there.

Wheelie Catholic on Sirius Radio's The Catholic Channel

...next Thursday at 5pm. EST (Channel 159 if you get Sirius radio). I'll be talking with The Catholic Guy about my blog.

Click above to see a link to the Catholic Channel.

Learning disabled in UK lose college places

About 3000 students with learning disabilities have lost their places in college, declaring them "ineducable", according to this article in The Guardian. A parent states that this is a throwback to the rules in place decades ago.

EEOC can proceed with disability discrimination lawsuit against Walmart

Praying Lent 2007

Here's a link to a website about preparing for, working and praying through Lent. It's got wonderful spiritual and practical suggestions.

And how's this for a wonderful approach?

"If I imagine Lent as an "ordeal" or a time I dread in some way, then I've already pre-disposed myself to not get very much out of it. These days before Lent are a time to start anticipating something wonderful that is about to happen." (Via Praying Lent website)

What wonderful thing is going to happen in your life ?

{Audio version alert: Please note that the website contains audio versions of several sections, located on the right column of the link above which is the Home Page.)

"Those evil pronouns" a post from Growing Up with a Disability

David writes about the ways people with disabilities are dehumanized. He states:

"Dehumanization, treating people as though not human, rears its ugly head in many different ways in the lives of people with disabilities.
It can be seen…
…when we are viewed as pitiful,
…when we are called inspirational as we face the challenges that society has set up for us,
… when people treat us like cute little pets,
…when people do not speak to us but rather to our caregivers or our friends with able bodies,
…when people are overtly cruel to us because we look, talk, or think differently,
…when people assume that because we have disabilities, we don't have any gifts or talents."

And then he goes to tell stories of PWD - click above to read his whole post - it's a must read.

Cardinal Rigali's letter asks Congress to amend bill

... Genetic Information Nondiscrimination Act (H.R. 493).

The bill fails to address discrimination against families based on the preimplantation or prenatal genetic testing of their child, or genetic testing performed on an adoptive child before an adoption is completed.

The article via USCCB (United States Conference of Catholic Bishops) states:

"As a result, an insurance company may misuse knowledge of a child’s genetic defect to raise a woman’s premiums, cancel her insurance, or even pressure her to have an abortion or cancel adoption plans for a child with special needs, because the company does not wish to cover the additional needs of a child who will develop an illness or disability."

A link to the Cardinal's full letter is available at the above site through USCCB.

Largest Minority.org will be broadcasting a show on Ashley X

....you can listen to it live on wbai at 11 a.m. There is a link to wbai from the link above. The show will also be in the archives at Largest Minority after its broadcast.

Via SDS listserv

Disability Culture Watch: A new blog

..by Simi Linton,Ph.D., author of My Body Politic and Claiming Disability: Knowledge & Identity. She describes it as follows:

"DCW is on the watch:
* reporting on what disabled artists of all stripes are doing;
* calling attention to the all-too-common misrepresentations of disability;
* lauding the smart depictions and revealing characterizations that are beginning to pop up - even in mainstream media."

Click above to visit!

Segway Wheelchair

A European designer adapts a Segway for wheelchair use .

Untold Stories: Neighbors Unite after Tornado & a Quad's firsthand experience of a tornado

An anonymous reader emailed me a link to this article from Catholic Online about how Floridians who recently suffered tornado damage found abundant help in its aftermath.

Father Browne from Sacred Heart parish arrived on the scene of a damaged neighborhood in Isleboro only to find that people didn't need help. Local contractors were already at work, clearing debris with chainsaws. Other residents were hard at work helping those with damaged homes.

The article reads in part:

"“It was amazing,” Gretchen explained. “People from the subdivision came to help us. We’re not really one big family - just families living in each house. We hadn’t even talked before and yet people were coming to help out.”

As police let volunteers into the subdivision, people from Krantz’s work arrived with water, Gatorade and bags of food from McDonald’s. The American Red Cross delivered pizza and sandwiches and a representative from the Federal Emergency Management Agency arrived. To Krantz, it seemed like every city employee had been sent to help clean up. By 9:30 p.m., Friday, power was restored to the most of the area." {Via Catholic Online}

This help not only restored the residents' physical needs, but their faith in others as well. According to one resident, she said that she learned how much she was loved.

****

goldchair emailed me the following story:

Via Summer 2001 Accent on Living

In 2001, a quadriplegic in Kansas named Curtis faced a tornado alone. Like myself, once he is in bed, he doesn't have any mobility.

His attendant, Janet, called him as the tornado was going through from a local church. He assured her that he was fine and to stay put since the tornado was heading in her direction.

Both survived. Curtis' advice to a quadriplegic or person with a disability facing this situation is to throw blankets over oneself - as he pointed out, unless you have a backup attendant, there isn't much you can do. An employee at an Independent Living Center, Curtis was very matter of fact about the situation.

By the way, Janet came over and checked on him as soon as the tornado passed.

[This is the first in a series of stories that are news "worthy", but may not have received the recognition in the media they deserve. If you know of a story like this, please email me a link or information about it.]





"

A Gratitude Check....

You Are 91% Thankful

You're an incredibly thankful person, and everyone around you feels very appreciated. You inspire people to be more optimistic, forgiving, and grateful.

How Thankful Are You?

Took this quiz after seeing it over at Monastic Musings.

I think I got a high score because I take tests well LOL but hey, maybe I'm more grateful than I think.

Why not give it a try yourself?

Riding on Air - I made the Switch...

It's similar to a Mac versus Windows decision for wheelchair users- what kind of wheelchair cushion should I use? They make cushions in many types - gel, air, foam and honeycomb materials.

I've tried them all over the past dozen years. The gel one bottomed out too quickly and, as one of my tennis friends said, "It's like sitting in a pit then." The foam ones were okay at first, but then the issue of pressure sores reared its ugly head. The honeycomb is a nice change, but sometimes is too stiff for my taste.

I know. I'm sounding like the Princess and the Pea. But I sit on this thing for many hours a day.

So I decided to try an air cushion. However, I have a big cat and was concerned about him using the cushion/wheelchair as a landing pad followed by a loud hissing noise. Everyone assured me that they have cats and air cushions and everything is just fine.

"Besides," they add, "you get a repair kit with the cushion."

So I sighed and ordered the Roho Mosaic, the (cheapest) least expensive air cushion I could find that I wanted. It came in a box with a hand pump, a repair kit (good) and a cover. The instructions were so easy that I was able to get it pumped up (with the help of the FedX guy whose hands DO work) in minutes. I found a comfortable inflation level, placed it on my wheelchair and - voila - it's in use.

It's as comfortable as the $300 Roho one of my friends bought, which I'd read on a message board. It's not divided into quadrants and I can't control the inflation level as much that way with this cheaper model, but that's okay. I'd rather get by with a less expensive version in any of the medical equipment I use that falls in the category of "Experimental". It's simply a financial decision, not necessarily a medical one at this point.

And that discussion belongs under a different label.

New interactive feature: Untold Stories

I posted previously about how there are many stories that don't get covered in the media because a great deal of time is spent on sensational issues.

I've been thinking about this topic since I went to Mass on Sunday. During the sermon, Msgr. Malovetz pointed out that we are bombarded with news and (I am paraphrasing) it can be difficult to discern what is and is not important.

So I've decided that it's worthwhile to add a new feature here: which is to ask readers to submit links/information to and about untold stories- stories that may not be sensational enough to make it any further than local news, but are of intrinsic worth. They may be stories that are only known by families and friends - I'm keeping the definition open for now.

The story can be either current or old, it can be about any topic or person, although I do want to emphasize stories that are related to my blog. However, if you run across something interesting, please forward it. And let me know if you want credit (your name in the post, a link to your website, blog, etc.) Feel free to include a short bio or introduction about yourself as well.( I'll assume that whatever you put in your email can be posted unless you indicate otherwise.)

My email is located in my profile!

Nominated in Catholic Blog Awards...

Just a thank you to the person who nominated my blog in the "Individual " category at the Catholic blog contest/awards.

It's nice to have recognition for my blogging, but more importantly I hope it lets more folks know that my blog exists - and is available as a resource to them, their friends, family, fellow parishioners, etc. Attracting more readers always leads to connections with more people who may need or want information and referral services!

So if you're reading this post and you've come here via the blog awards, would you please spread the word to anyone who might need this blog to let them know about it? Thanks in advance.

And I want to take a moment to thank all of the bloggers who have been kind enough to put me in their blogroll.

Click above to go visit the Catholic blog award web site, vote or check out more blogs to read!

The Catholic Carnival is Up!

With lots of "chocolate-covered" posts - of different flavors! Enjoy.

Email prayer requests

For Y.D., who is undergoing surgery tomorrow.

For Chris, who is dealing with medical equipment issues.

For J.H., who is looking for a job.

For Mike, who is undergoing surgery on Wednesday.

For Betty , whose guide dog has to be retired.


Lord, please hear our prayers for these brothers and sisters who need Your help. We hope that You will grant them peace of heart. We pray that those of us here on earth who are near them will be moved to extend a loving hand and help to them, both in spiritual and practical ways. Finally, we ask that You guide them through these life changes safely through Your protection.

Amen.

The Untold (and Unexciting ) Stories We Never Hear

"The public have an insatiable curiosity to know everything, except what is worth knowing."
Oscar Wilde

Anyone who has cable TV has seen it - the 24 hour news station. Pick your brand - vanilla, chocolate, strawberry - but all of them have one thing in common - a ratings race.

So they show news that people want to see. I know this is true, because when Anna Nicole Smith died, all of the news about the Iraq war, the nuclear arms negotiations with North Korea, and the situation with Iran disappeared except for short bits at the top of the hour. Instead we were regaled with pictures of the star, her son, her baby, and the baby's first, second or possibly third fathers. People were interviewed - her past agents, her mother, her sister, possible fathers, possible fathers' lawyers and even a woman outside of the hotel where the body was taken from. (Her fifteen minutes of fame.)

If you still doubt that this happens, the same thing occurred when a NASA astronaut went off compass the week before. All of the other news was pushed aside in favor of that story, sensationalized beyond any sane person's ability to withstand.

And, yet, these situations are tragic. A young baby is left motherless and a woman is dead at 39, her only other child, a son, dead at 20 years of age. A highly educated, committed woman who served our country and sacrificed a great deal has allegedly broken the law, and ruined her career and reputation.

Based on ratings, our insatiable curiosity as a nation will apparently never be satisfied, no matter how much coverage we see of events such as these. Next week there will be another sensational story. The faces will change, but the reality will remain the same: The stories that are not being told are more often the ones worth knowing.

Testing law may change to accommodate children with disabilities

Federal testing requirements under the No Child Left Behind Law are raising issues regarding kids with disabilities. New changes are being considered to accommodate both the needs of the children and to gauge the progress of the school in meeting the law's requirements.

As of this point, according to the article (click above), the subject is still under discussion.

Wherefore lieth thou thus?

Photo description: Wheelchair athletes in sports wheelchairs are on a basketball court during a match. One player's wheelchair has overturned and he is laying on his side while other athletes continue playing and a few look over at him.


Why do we do it? Why do people in wheelchairs play sports like quad rugby and knock each other over? Why do my wheelchair tennis friends go after balls so quickly that their chairs turn over, trapping them underneath?

Because we like it.

My coach has told me that our tennis program has a new player. This is very exciting news. I love it when a new player signs on and joins us. I particularly like it when it is someone who enjoys doing it. There are some people who try it out and play for awhile and stop and that's fine. Maybe they'd rather play recreationally instead of competitively. Or maybe they just don't enjoy doing it enough. That's okay too.

But for those who love playing sports, pictures like this don't surprise them. They don't sit and think about whether to go after that ball or make that play. They just do it because they are there. Because they can.

And that's a beautiful thing to know when you have people telling you all of the time what you can't do - that you can.

You kids in Oswego can stop praying for snow days now....

Photo description: A man in a snowmobile passes by a building covered with ten feet of snow. Snow is piled high on the side of the road where the snowmobile passes.

...please!

"You're the clumsiest paraplegic I ever met"...

....he said, leaning down and handing me the item I just dropped.

We met, eye to eye. He, the paraplegic, was in his titanium wheelchair and I, the quadriplegic, was in my titanium wheelchair. And, in that moment, I had to make the decision again, the one that I make over and over again since my spinal cord injury worsened a few years ago.

Do I tell the truth and say I'm a quad? Or do I laugh my hand and arm impairment off as clumsiness?

The decision is different depending on the context. Some people freak if I tell them I'm a quad. Others listen quietly. Some hotly deny it's permanent or insist that it's a matter of willpower for me to be a paraplegic, even walk again.

But this guy is another person with a disability, so I decide to tell the truth.

"I'm a quad," I say.

"I know. My best friend's a quad," he replied. "So what the heck - want me to put that on the counter for you?" And he took my items and put them on the counter at the wheelchair tennis tournament. When he asked my level, he whistled. "You do great."

"I'm a jock," I replied. "I muscle through everything. But I'm clumsy-"

"Yeah, a real clumsy para," he said, winking at me. "But you could look at it this way. Maybe you'd be better off being a really graceful quad."

Now, in a fairy tale, that would be the end of it. From this incident six months ago I'd accept that I'm a quad and take that as a compliment from a Paraplegic Prince and move on.

But that's not what happened. On Friday, Meredith comes over and I say something about my "clumsiness". She looks me in the eye and says "You're not clumsy. You're a quadriplegic." I roll around a bit, mulling that over. Then she repeats it. (It can really put a kink in denial having someone around who has a PhD in Sociology.)

"OK, OK," I say.

She rolls her eyes. I can understand that. She has the disadvantage of not having a wheelchair to roll around in.

"OK, I won't say that I'm clumsy anymore," I say.

"Good. Because you're not clumsy. You're a -"

"Quadriplegic," I say. "Incomplete. And I might get function back."

She rolls her eyes.

"Or not. It's not like I'm sitting around waiting for that to happen," I say.

But after she leaves, I look at the pictures of myself from my ski trip back in 2001. I can see the difference, feel the difference. My fingers don't move. My wrists don't move. Everything below my elbows is like a trout - I can slap my arms around, train them to work from the elbows, like synchronized swimmers trying to pull off a trick. And there is a mourning and grieving that is still going on.

And the questions remain every time I try to do something I used to. Can I ski? I don't know - we didn't have enough snow on the trip to try. Can I cook? Not yet. Can I turn a page? No. Can I get in and out of bed? Thankfully, yes, with the right equipment.

In fact, I have alot of function that I take for granted that other people do not have. And I don't deny being a quad because I think being a quad makes me inferior. It's because I don't want to be any more dependent than I have to be. My life has become like a ballet, where people dance in and out, helping here, helping there with things that need doing and trying not to trip over each other or me as I try to work and live a life. And I want to tell them all to go home, get their own show. Go pirouette over there!

But I need the help. So there's this delicate balance between accepting help and accepting the limits of my disablity as it now is and it's different than it was a few years ago. Thankfully it won't change again. That's the good news. But the bad news is that I'm done with the rehab and all of the "windows" and "time frames" and now the show must go on. Perhaps there will be more improvement. I'll continue to work toward that. But in the meantime, I have a choice to make.

Only I can decide. Will I be a clumsy paraplegic or a graceful quad?

Two new Catholic blogs added!

I've added two new blogs to my blogroll. Both are by Fr. Ben Hawley, S.J.. One is The Good News and his introduction reads:

"Welcome to The Good News Blogspot! The Good News is real and alive in my own life. Jesus has fulfilled in my life His promise of fuller and more abundant life (John 15), a quality of life I could not have created for myself. I invite you to share experiences with me so we can all grow into the life He offers us all."

His second blog is called Living Christ's Eucharist in Our Daily Lives. He writes:

"Christ died for us – really died for us. He did not die in the abstract world of theological ruminations. He died for us in the reality of our daily lives. Jesus of Nazareth had to die, and the Risen Christ had to rise. And this dying and rising make all the difference in the world to us as Catholic Christians."

If you are looking to enrich your spiritual life, please visit these blogs. They are at the top of my Catholic blogroll and I have added a link to The Good News above.

Crankiness as a Spiritual Nudge

Yesterday I felt so cranky that not even my cat would come near me. It wasn't that I'd said a harsh word to him - he just sensed my bad mood and stayed out of my way.

I've been , for the most part, stuck inside for weeks now because my so called cold isn't moving out of my lungs. Because the temperatures here have been so low, I've been advised to stay inside.

Usually I ignore advice like this, but when I did sneak out I found myself breathing so thinly that I decided perhaps I should listen. Fine.

I can understand that being stuck inside would not feel good. Yet I'm disturbed by how cranky I felt. It's not like I called people up and took it out on them.

But I sure was feeling sorry for myself in a big way. That is, until my aide showed up. Unlike me, she had a really hectic week of running around. I took one look at her weary face and my self pity vanished.

I felt bad for her. I even tried to get her to leave earlier than she was going to. I put her coat on my lap and rolled over to her and she jokingly asked "Are you throwing me out?"

Well, yeah. I was. Until we both realized that she had to plug in my accessible phone which wasn't working properly. So ten minutes later, she did leave - maybe a few minutes earlier than she had planned.

At some point I realized that my crankiness was a spiritual nudge for me to "get" that giving into my feelings just because I didn't like what was going on was wrong. It's just not a state of mind I aspire to. It's not the best I can do. I, as an adult, can exercise better self control than that.

Others do. And God, with his sense of humor, plants them right in front of me sometimes.

In the meantime, I hope that it's warm enough that I can get out of here soon.

Dr. Elizabeth Browne

..has written a book -The Disabled Disciple: Ministering in a Church Without Barriers. A member of the National Federation for the Blind, she has worked toward inclusion in all areas of life.

Click above for one of her articles challenging biblical stereotypes of the blind.

As I read her words about cringing at the portrayal of her disability in the Bible, I could relate.

Insurance companies limit spinal cord treatment

Insurers are capping coverage on those with spinal cord injuries doing rehab despite medical advances showing that such rehab can lead to vast health improvements and a better quality of life.

Elder care: Family caregivers

Here's a link to the blog Caring for the Saints, about families caring for elders. It's a wonderful, supportive spot in our blogosphere. Check it out.

Dream Mom: The Secret

Dream Mom: The Secret

Dream Mom writes:

"I have learned over the years that children with mental and physical disabilities are not scary people. They aren’t too be feared. They are just kids. They are loving. They are happy. They are sweet. I never in a million years dreamed I would fall in love with them, but I did.

Society makes them scary. We perform all of these prenatal tests and when they aren’t perfect, we think our lives are over. Nobody bothers to tell us that it’s o.k., it just might be different. "

She has learned "The Secret". Go on over and read about it.

MS Action Alert

The Quaker Agitator blog has a legislative alert asking folks to take action to avoid funding losses to those with MS.

Go on over and read about it.

QuakerDave also reminds us that MS Awareness week is coming up in the beginning of March.

Love his blog description - "Walking "cheerfully over the world, answering that of God in every one." Even the ones who drive me crazy."

A review : L.A. Hospital dumpings

Back in October 2006, they used ambulances to dump 5 patients.

Via MSNBC

Back in the News: Hospital van dumps paraplegic

Sadly, back in the news, another "hospital dumping" in L.A., throwing a human being onto Skid Row as a hospital release. But in this case, it was a paraplegic - without a wheelchair.

A detective described what onlookers saw:

""He was sliding along on his bottom using his hands," Long said. "He had a hospital property bag in his mouth, in his teeth, and he was trailing a colostomy bag, which was malfunctioning."

He had no wheelchair or any other mobility device - a case of neglect, abuse and shameful disregard of a human being's dignity.

Via Mercurynews.com

Catholic Blog Awards

Nominations have ended. Voting instructions will be available on February 12 and voting will end on February 16. Click above to go there.

Did you get your favorite Catholic blogs into nominations? I did! This contest is to be taken in fun and it's nice to get a chance to show appreciation for some of the hard working bloggers.

As for me, I blog as a vehicle to spread the message of inclusion and advocacy - and offer a hand if people need resources, suggestions or even a shoulder to lean on. When I get a comment or an email from someone in need, I know I've written that post for a reason.

I do want to add that I am often blown away by the blogs I read and the level of intellectual writing (and reading) and preparation that has gone into them by both Catholic and disability bloggers. I admire their work ethic and talents.

But no matter what kind of blog it is, what purpose it serves, or whether I'm reading a Catholic blog, a disability blog or any blog, I'm hearing other Voices from that community which enrich my beliefs and life experiences.

Where IS that size Allen wrench?

I've owned several sets of Allen wrenches which I need to do repairs on my wheelchair. Every time I buy a set, I wind up losing a few of them.

In fact when my footplate dropped too low on my ski trip (yeah yeah I shouldn't have chased that snowmobile down the logging trail), I didn't have the size Allen wrench I needed with me to fix it , although there were actually people with hands that worked around. Darn. Hate that as a quad.

So this time I bought a set at sportaid.com which comes attached to a main center. $5.99. It's a bargain.

Post polio information

...from Pastor Dick Helms website. Pastor Helms has an impressive array of links as well as personal stories based on his own experiences from disability to recovery to disability as he calls it.

I have a few friends who are dealing with post polio symptoms as they age and found this site very informative and helpful. Thanks , Pastor Helms!

Whose Planet Is It Anyway?: Life Is Suffering

Whose Planet Is It Anyway?: Life Is Suffering

An excellent post about eugenics that states in part: "If we aborted every fetus that was ever going to suffer, the human species would promptly become extinct." She also notes that perfection is a moving target and that many children now labeled with disorders would not have been years ago.

"

The Face of Autism

Sister, I never did pass gym.....

I've always been a dreamer. When I was a kid, the nuns who taught me encouraged me to use my imagination and write.

So when I got to public high school, I was surprised to find that using my imagination landed me into big trouble within the first month after I wrote a piece for the high school newspaper making fun of gym class.

There was a big hullabaloo about the whole thing. The editor, a senior, protected me, a freshman. It was like a Deep Throat incident. Newspaper staff were leaving each other notes in the girls' restroom as to what they told the administration about the author of the controversial piece. The minute I found out about it, I marched into the office and announced I was the one who wrote the article, which ended the whole thing. I didn't even get detention, just a stern warning not to make fun of anything at the high school ever again.

Right.

As you can see from looking over my blog, I took that advice to heart - not. I think I was too far gone in my outspoken ways by the time the nuns were done with me to ever recede back into the shadows and keep my mouth shut. I was not only a dreamer by the time I finished eighth grade - but an outspoken, articulate one.

To be blunt, I left high school prematurely, obtained a GED and went on to college early mostly because I felt as if I was dying intellectually. The high school I attended had textbooks that were 20 years old, teachers with low expectations and an administration that thrived on keeping the status quo. I never looked back or regretted leaving and moving on.

Of course, they refused to issue me a diploma although I'd completed enough credits in the few years I went there and was ranked first in my class. The reason?

I didn't have enough credits in gym class.

Secretum Meum Mihi

it's a monthly Catholic newsletter for women that discusses faith issues . Highly recommend it!

The Gimp Parade: Doctors involved with Ashley Treatment not as unified in support as previously indicated

The Gimp Parade: Doctors involved with Ashley Treatment not as unified in support as previously indicated

Disability Awareness Quiz

Over at Wheelchair Diffusion, Ziggi has posted a Disability Awareness Quiz. Go on over and take it.

Deaflympics

Did you realize that the Deaflympics have been going on since February 1 and will end February 10? If you'd like to see some of the sports action from Salt Lake City, click here.

Disability Rants: Subhuman standards once again

Disability Rants: Subhuman standards once again

Over at Disability Rants, a post by a wheelchair user about woefully inadequate seating at a theater. Great comments too.

Disability and suicide: A tribute

Don't kill the dream - execute it ~
Unknown

I learned early on in my young adult life that I could spend my energy trying to make things happen that I believed in - or making a choice to let opportunities go by. I also learned that when I let opportunities go by, I never felt very good about myself.

Sometimes living this way was a burden I didn't want. I watched as other friends partied while I went on to get more education. Then I took low paying jobs and volunteer positions because I knew that was part of executing my dreams. My adventures took me places and introduced me to all kinds of people. All of them, I began to realize, were special human beings. Each person I met, no matter what his or her circumstances, whether they were in an institution, lived in a mansion or a city housing project - had more in common than not by virtue of their humanity.

I was baffled at the extremes I saw - not just the poverty versus the wealth, but the great despair neglect wrought in some people, no matter what their material circumstances were while others had such hope. Eventually I learned not to feel intimidated by someone's wealth and I learned not to assume that someone's poverty meant their life was not a full one. I learned to see past their circumstances to the person.

I learned that if someone did not feel loved, nothing else mattered.

Several years ago, a friend of mine with a disability killed himself. He had money, a good job and fairly good health. But he thought he had no one who cared about him. He was a generous, funny guy who is missed by everyone. He was a special human being who became, in his mind, a throwaway. He lost his caregiver and his family member died. In a tragic act of desperation, he took his own life.

I'm posting this in his memory. If anyone reads this and remembers to reach out to one other person who needs to feel connected, it's been worth writing.

And if by any chance *you* are feeling like a throwaway, please reach out for help. I wish someone had said this to my friend : You are a special unique person who is lovable. There is no problem that supercedes your worth as a human being.

If you've lost material wealth, you can find spiritual wealth in the meantime. If you've lost your health, you can use it as an opportunity to philosophize about life. If you've lost friends and family, you can build a bigger community than you ever imagined.

Don't kill your dreams - live them out.

RIP HG

NATIONAL SUICIDE HOTLINE
1-800-SUICIDE

Disability blog carnival 8 is up!

There are lots of new contributors. Go check it out!

My favorite was from the 19th floor - writing about getting together with other disabled friends - totally related to it.

I'd rather wear a MAG than a Depends....

With the recent arrest of a NASA astronaut, everyone in the press has been referring to the fact that she brought diapers with her on the car trip. A few people have objected to using the term diapers, insisting that she was carrying MAGS instead. MAGS are maximum absorption garments worn by astronauts in space - and are, basically, adult diapers.

But MAG sounds much cooler.

The astronauts also carry an IDB (an In suit Drink Bag). On wheelchairs, I have to order something called a "drink holder". I'd rather have an IDB.

IDB sounds much cooler.

You get the idea. Those of us with disabilities need to revamp the language used for our daily needs for drinking, eating and eliminating. Let's be like the astronauts and give items cool names.

I don't want to call my eating utensils by the names of rocker knife and spork. I'm going to call them RKU (rocker knife unit) and SPK (spork). (I think there's a three letter limit .)

Moreover, I might start calling my wheelchair a WMD (Wheelchair Mobility Device). Oh wait those letters are already taken!

Guess I'll have to go back to the drawing board. The DBD......

Click above for astronaut terminology.

Musician with disability plays guitar with his toes

This guy has an awesome voice. Check it out.

Wherever my wheelchair goes, I go

As a person with a disability, I've had to face certain realities.

One of them is that wherever I go, my wheelchair goes. Because of that, people sometimes see my wheelchair first and it can be more difficult to engage them in seeing me. It's easy to get lost in a sea of assumptions whenever two people meet for the first time. The wheelchair just adds another dimension to that.

There are people who tell me that my wheelchair makes them nervous. There are others who want to ask a lot of questions. Some people have known someone in a wheelchair and I remind them of the person.

Of course I can't get bogged down in all of this every time I am around people. If I did, I'd waste too much energy doing that rather than interacting naturally with people.

Whenever I find myself noticing that someone has a reaction to the wheelchair, I try not to be too distracted by it. In fact I sometimes remind myself of how one of my blind friends teased me out of my self-consciousness by banging his cane against my wheelchair and announcing "Oh, that must be Ruth.”

That just about sums it all up. It is me-in a wheelchair. Like any form of mobility people use, whether it be a car, bike, skateboard,etc. , my wheelchair is a machine, a piece of equipment that gets me around. It is different in one sense - I don't like it when someone touches my wheelchair without permission. But that doesn't mean that I feel it is part of me. I've never experienced it as being part of my body.

It is part of my personal space, but that's different. I consider my eyeglasses part of my personal space and would be furious if someone came along and removed them without my permission. Not to mention that I would begin rolling into walls.

Maybe this will answer some of the questions people have about someone who uses a wheelchair to get around everyday. Maybe not.

All I can tell you is while some people are having a reaction to my wheelchair, I'm probably thinking about my grocery list, a cute guy across the room or some other unrelated topic. I doubt I'm thinking about my wheelchair-unless of course there's something mechanically wrong with it that day.

So don't feel like you have to think about it either. In fact, many times, I really would prefer that you don't.