Tuesday, January 30, 2007

Wounded Warrior: Anderson Cooper CNN series

Due to the opening of the new Center for the Intrepid rehab center for those wounded in Iraq, Anderson Cooper is doing a series of stories on military people with various disabilities. His show is at 10pm est and various stories are being aired throughout the day.

As one staff member put it, the emphasis is on maximizing what these folks can do now, no matter what that takes.

More than 23,000 have been wounded to date in the war.

A profile of Hernan Reyes, quadriplegic artist

click above for a video on his work

Lumen Gentium

Here's the text from Vatican II, as promised in an online, accessible form for those who prefer (or need) this to a paper form. (Our parish is offering a study/discussion group on this. )

Enjoy!

lifekludger: New to the blogroll

I added a few new links today. First of all, there's Disabled hands, a site which points out devices that work well for people with hand impairment.

And I finally got around to adding lifekludger, a great blog by Dave, a quadriplegic, who reports on ideas and experiences he's had with adapting items for those of us with disabilities. He calls them "workarounds".
We must not, in trying to think about how we can make a big difference, ignore the small daily differences we can make which, over time, add up to big differences that we often cannot foresee.
Marian Wright Edelman

Monday, January 29, 2007

Sting in Chicago to catch people who illegally use handicap placards...

..to park for free at meters. Those caught were using relatives' placards, for example. Click above for the story.

You can ride your scooter in the road in NJ if you're disabled, get a sticker....

..and buy insurance. I'm not kidding. You need to buy insurance.

2 men arrested for stealing car after parking it in handicap spot illegally....

ha!

Nick Wallis' story

He talks about how many people do not see people with disabilities as being sexual....and about his choice to hire someone to have a sexual experience. He speaks about the fact that something is lacking in society because he had to resort to this. Click above to read his article.

Hospice arranges for disabled man...

.... to be with prostitute when Nick Wallis, who has muscular dystrophy and is in his 20's , but never had sex, made the request. The hospice is run by an Anglican nun.

His story will be featured on BBC 2 in the UK.

A Monday morning in white.....


I awoke this morning to a snow covered ramp, car and driveway.

The snow was beautiful while it was falling last night as I fell asleep. I looked out of the window several times and remarked to my cat "Isn't that nice? How wintry."

But reality always sets in when we have to get around in the white stuff. So when I looked outside this morning and saw that the snow was still there, I groaned.

It was then that I heard the scraping. Someone was outside, scraping snow off of my car windows. Then I heard them shoveling my ramp. Wordlessly, silently, this person dug me out, then drove to work.

Her thoughtful and generous help made it possible for me to independently get out.

Immediately I pulled myself out of bed with my trapeze and had some coffee. I no longer felt overwhelmed and trapped.

I'm always humbled by the flat out generous help I get from others. Their sacrifice of time, whether it be ten minutes or one minute, makes the difference sometimes between whether I can be independent or not the rest of my day. Most of those who help me do so quietly.

I am long past the stage of having people around who are helping me because it will, they believe, make them look good. Those who have stuck around show a quiet strength of character and a spiritual way of life that is referred to by one of my blind friends as "rare birds". Often only they and I know their good deeds and sacrifices.

So here it is, another Monday morning and I am yet again freed by the spiritual generosity of another human being.

It is beautiful outside, isn't it?

Sunday, January 28, 2007

Wheelchair Dance Competition in Europe



Check out this video of a dance competition in Europe (my favorite is the Rumba, near the end...)

Singing and Dancing Toward Inclusion

When I was on my trip at Ski For Light, I asked a number of my blind friends about their experiences going to church. At least three of them told me they attended Catholic Mass in a local parish. When I asked about how their experience was for them, I received a mixed reaction - one reported it was not comfortable, the second reported that it was "okay" and the third replied "I don't know if everyone else is comfortable, but I am!"

Her name was Isabel. She told me that she loves music and likes to sing and dance at every opportunity. (And I witnessed this throughout the week!) She was emphatic about the fact that her enthusiasm for life - and her Catholicism - was contagious to others around her - and she was comfortable with that. In fact, she told me that the bishop knows her and ended by saying "How could he not?"

It's true. She has an outgoing, wonderful personality. Isabel could fit in anywhere.

This got me to thinking. I've always known that perceiving people with disabilities as different is really the attitude we need to work on changing in everyone. For someone like Isabel, her style of dealing with an attitude that she is different varies quite a bit from mine. I intellectualize - she dances. I speak up - she sings.

Neither of us is wrong and neither of us is right.

The bottom line regarding changing attitudes toward those with disabilities and achieving more inclusion is love. When any community acts out of love toward its members, many negative behaviors disappear or get checked as members become accountable to each other and the community at large. This atmosphere allows someone who loves to dance and sing to be herself, another who is more serious to be herself, etc. It also encourages each member to remain open to the needs of others and be open to change that benefits all.

So this Sunday at Mass, I found myself carrying with me the joy for life and faith that Isabel showed me. I smiled more. I laughed more.

Sharing our experience of joy in our lives is a great way to work toward inclusion, no matter how we choose to do that.

Saturday, January 27, 2007

The First Blog Village Carnival :Family Theme

Click above to visit this wonderful carnival!

Saddened to hear...

...that Gimpy Mumpy closed her blog. She was one of the first people in the disability blogosphere whom I met and she was supportive and friendly toward me when I first started my old blog In the Name of Quad years ago and was brand new to blogging.

I wish her well.

The late Pope John Paul II ...


....regularly slipped away to go skiing for years during his papacy, according to a news source. People did not recognize him.

Fly bye

You disappoint me, my friend,
Not because I expected you to understand-
Just not to pretend.

There was that moment (I recall)
When I became the cripple to them all-
Your eyes averted mine,
Denying it all.

Now you say it's all okay
That it would have happened anyway
And I've just got a chip on my crip self
Because I brought it up today.

Don't worry, because it won't happen again.
Go on, pretend.

And
I'll just offend,
Passing on your left
From the fast lane.
The screaming in my heart muffled by
The sound of my tires
Squealing, wheeling by
As I circle and fly.

Right on by.

And bye.

Friday, January 26, 2007

Thoughts on parenting a child with a disability

David from Growing Up with a Disability, shares his thoughts on parenting a child with a disability in an interview. over at My Autistic Boy and Other Adventures in Fatherhood.

Disability Blog Carnival #7 is up!


Celebrate the Carnival in Three Acts covering "Disability History" and "Disability in the Arts," hosted by Penny Richards over at Disability Studies, Temple U.

Thursday, January 25, 2007

"Just a minute is 60 seconds too long " : New public service announcement


..aimed at raising awareness of the problem of people illegally using handicapped parking spots stars Mark Zupan, who was in Murderball. Click above for a link to an article and video about the campaign by United Spinal.

It emphasizes that parking illegally in handicapped spots even to just run in for a cup of coffee, use an ATM machine or do another short errand out of convenience, is wrong and shows Zupan waiting for a handcapped spot to open up when someone else illegally parks there.

I'm hoping they do a whole series - highlighting all of the rationalizations used , including spaces taken by motorcycles, people using disabled relatives' handicapped parking permit, etc.

The campaign is also aiming to promote awareness NOT to park in the striped access lane adjoining the handicapped parking spot even if you have a disabled parking permit since that room is needed by wheelchair users to transfer into their wheelchair. (I experience this frequently where I cannot exit my car or, worse yet, can't get back in when I return and someone has decided to turn one handicapped spot into two.)

Wednesday, January 24, 2007

Ski for Light 2001 pictures

I've had so many folks ask to see pictures of the ski trip - and unfortunately I may not have those for awhile, but I did find some from years ago.

Click above for a photo album of the trip from 2001 prepared by Ed Kenlon, the husband of one of our skiers, Marilee. (My picture is toward the bottom! I'm on a sitski with poles duct taped on, skiing with Dave....)

You will also be able to see pictures of blind skiers with their guides - and the famed Land of the Vikings!

Do you have difficulty loading DVD's?

If so, you might want to check out Netflix's new feature, Watch It Now.*

For someone with a hand impairment, it might fill a gap.

You need a Netflix subscription to use it and it's being made available over the next five to six months across the country. The way it works is that you get online viewing time in hours equal to the number of dollars you pay on your selected subscription plan. The 3 DVD's at a time plan for 17.95 gives you 18 hours of viewing time, for example.

When you go to your Netflix home page, you'll see a box that says "Watch It Now" (again, when available in your area). You click on that and it leads you through a very short download to allow you to stream/watch movies that you can pick. I found the selection to be adequate, especially in the areas of documentaries and dramas. There were some other categories that seemed lacking, such as comedy and thrillers, in my opinion. ( I also didn't like that I can't play movies on my Mac but luckily I do have a PC with Windows.)

Once you select your movie, you hit the Play button and the movie begins to download. When it's ready to play, the button Play pops up and you simply hit that. Voila! You're done. As you watch, the movie continues to download. I had no lags or interruptions except when I, the quadriplegic, accidentally closed the viewing window at one point. I thought I would have a difficult time finding my place in the movie, but I simply went back to Netflix, clicked Watch It Now and then set the bottom feed to about a half hour into the movie and forwarded/rewound from there with my head cursor to find my place. It was no problem at all.

My computer with DSL only downloaded at a basic streaming level, but it was adequate. The quality of the picture could have been better, especially when I tried to watch the movie in full screen.

I think it's a great alternative to struggling with hard copy DVD's. As their selection grows and they work out the glitches with no availability on Macs, Netflix is offering something that can be a real help to people who need to do things on their computer due to their disabilities.




*I received no promotion or gift in exchange for this blog post.

Catholic Carnival 103 is up!

Tuesday, January 23, 2007

Autism documentary shows at Sundance

Fee fi fo fum -

I wish the flu season had come and gone.

Seems I picked up a type of flu the end of my trip and am still recuperating. I retreated to my room and have this vague recollection of people knocking on my door, sticking their heads in and asking me if I needed anything. And I would rouse myself enough to reply "Tea" or "kleenex" and then fall back asleep.

At one point I woke up and my friend Sue's guide dog Wonder was in the room with me. She kept coming over and snuggling me. It helped.

Janet the OT came into my room and talked me out of trying to be in the talent show, pointing out that I couldn't even get into my wheelchair at that point. I stubbornly insisted I could go on with the show. But in the end I was a no show.

Then someone stopped by and asked if I was going to the dance. I tried to raise myself out of bed, then just muttered "More tea." So much for that.

In the end, I felt fortunate that I was well enough to travel home on Sunday.

I know it was because of the loving care of all of my Ski for Light friends - and guide dogs. Thanks, everyone.
God is not what you imagine or what you think you understand. If you understand you have failed. ~Saint Augustine

"Is she OK?" "What's the matter with her?"

I looked up from my lap, where I was struggling to get money out of my wallet with my paralyzed hands, and saw two women standing about ten feet away, watching me.

I realized they were talking about me.

Nice.

The first thought that entered my mind was to shout "I'm paralyzed!" quickly followed by "And it could happen to you too." But neither of those facts are really what's important. It is the negative attitude toward people with disabilities that needs to be addressed.

Let's start with talking about us in the third person.

We are not her, him or they. Nor are we he or she. It's rude to ask our able bodied companion "what does she want?"

We are, like everyone else, first persons and should be addressed, like everyone else, as "you". Third person language not only is objectifying to the recipient but it is dehumanizing. It also prevents direct dialogue.

Then there's the issue of talking about us instead of to us. For example, don't go to my friends, hairdresser or relatives and ask personal questions about me and my disability. You wouldn't want me to ask your husband personal information about you without your permission . Ask me. If I want to tell you, I will. If I don't, I won't. Some information about my disability I will readily share and other information is too private. But that choice is mine to make.

Last, but not least, we come to the issue of feeling free to make comments, such as the above ones, that imply that my state of being disabled is not OK. It's rude and primitive behavior that reflects ignorance and fails to acknowledge the dignity of the person with a disability.

It's like the story of the little boy who screamed in the dark and then a little girl panicked and screamed too. When asked why she was screaming, the little girl replied "I don't know. I screamed because he screamed."Joining in the rhetoric of "something is the matter with that person" or "that person is not OK" because he has a disability is much the same thing.

Let's review here. We, not they, prefer you to ask us any questions you may have but we may not think your questions are ones we want to answer. But the good news is that we are OK and nothing is the matter with us.

Monday, January 22, 2007

ski for light pictures

I don;t yet have photos from this year's trip but if you click above you can see photos of a sitski for mobility impaired skiers and of blind skiers with their guides!

Where can you find a quad, over a dozen blind people, several guide dogs and some vikings?

It's got to be at Ski for Light!

I'm just back from the Northeastern Regional Ski for Light program held annually in Land of the Vikings, Sherman Pennsylvania. It's a cross country skiing program held for those with visual and mobility impairments. Skiers are paired with sighted guides who teach them the basics of cross country skiing and, with more advanced participants, accompany them on trails and fields.

There is also plenty of time for socializing.

Ski for Light has programs across the country if you're interested in participating.

Tuesday, January 16, 2007

common grounds

This morning I've spoken with a Deaf person, a blind person, two people with spinal cord injury and someone with bipolar disorder.And it's not even 11 a.m. yet.

I have many interactions with people with various disabilities on an almost daily basis. And I'm always struck by the fact that, even though our disabilities are different and create different needs, there are many common grounds. We all deal with misunderstandings about our disabilities and struggle to get the services we need. We also share ways in which we thrive on a daily basis.

It's striking how similar our issues are in our day to day lives. Underneath our individual stories lies a repository of experiences that we can share with each other as well as with those in society who are designing social programs and providing services. It is from this that we'll eventually find solutions to the current dilemnas in services provided. It is through having that Voice that we'll create the clamor it's going to take to fix what is now an inadequate system for all of us.

People with disabilities know that when we ask for services or equipment the response may be that there is not enough money available and we may be labeled as having a sense of entitlement. But we also know that when the right mixture of creativity and resourcefulness is applied to any situation, much can be done, sometimes with less money spent rather than more.

There is currently a gap between the communication between the disabled community and those designing the services we receive. This results in much waste in spending in current programs. Tragically, there are people with disabilities doing without basic services because money is not being spent correctly. The "fix" is not to spend more, but to spend wisely, in accordance with the needs expressed by our Voices.

Yet how will anyone know this if we do not have a Voice that is as loud as the rest of society and those making decisions for us?

Catholic Carnival 102

Monday, January 15, 2007

Ugly Betty just won a Globe....

....and she thanked her mother. I'm sure she's a very nice person. This isn't aimed at her at all.

She looked elegant in a gown among the glitz and glamour of Hollywood's finest as she stood before them, speaking of how she gets emails from girls who feel as if they are worthy and loveable after watching her show.

The cameras scanned the crowd. There were tears in the eyes of all of the beautiful actors and actresses, their wives, partners, lovers, cameramen, directors, producers, etc.

When her speech was done, she walked to the side of the stage. Someone obviously told her she would be interviewed by an announcer standing there. Betty stood there, next to the announcer, shifting a bit from foot to foot, just not quite sure in her endearing way that she should be standing there.

Clearly it was either a mis-cue....or she just stood in the wrong place. She's a natural.

For a moment I found all of this heartwarming. Then my trouble-making Irish self thought ....

So what?

There's this beautiful actress hired to be dressed up as "ugly". But she's not ugly. It could only happen in Hollywood - that make-up is used to make her ugly. And the sad thing is that there are real girls out there writing to her about their feelings because they feel ugly. Maybe they're not ugly either.

Maybe none of us are ugly. Radical thinking, I know. If any of us received a Hollywood makeover so we could get an award at the Golden Globes and wore an expensive gown or tux, had people work on our make-up, and pamper us - we could all look much better.

Yet maybe the lesson of Ugly Betty needs to be not that we should all have a "feel good" moment that she's a role model, but that Hollywood has created such a false definition of beauty that real kids worry that they aren't good enough, worthy or loveable.

Go hug your kids. Tell them they're beautiful.

"Deafness and the Riddle of Identity"

by Lennard Davis Via the Chronicle of Higher Education

modus vivendi

Don't miss the beautiful artwork and people on this site - take a moment and click above! Be sure to scroll to the bottom to see it all....

Sainthood for caregivers.....


I wonder sometimes why most of what I read about caregivers online is limited to forums for them.

There isn't enough written about caregivers as models for sainthood.

Think about it. It's a profession (when done with the right motives/attitude), not a job, where a person acts on behalf of someone else as their eyes, hands, legs (fill in the blank) so the person with a disability can live a fuller and more productive life.

Have you ever helped someone in the grocery store? Perhaps a person in a wheelchair has asked for your help to reach something. Perhaps you said no and walked away. But chances are you probably retrieved it for her, gave it to her and went on your way.

Caregivers don't go on their way. They stay. For hours if necessary. And they come back, day after day.

They say yes.

If this isn't grounds for sainthood, I'm not sure what is. Some people tell me "It's their job". But it goes beyond that when caregiving is done as a profession. A professional caregiver knows how to :

*focus on the recipient's needs
* give personal space to the recipient , remaining nonjudgmental
* keep private personal information they know by virture of their presence

All of this requires a sense of spiritual maturity, a giving heart and an ability to set their own ego aside.

Of course I just answered my own question. The reason I don't see writings about or by professional caregivers is that they respect the privacy of the recipients.

And this is a tough standard. But they are out there.

And by the grace of God, I have one. I thank her from the bottom of my heart.

Fra Angelico and frescoes....

Sr. Edith at Monastic Musings writes a post about her trip to Italy , full of spiritual reflections and wonderful descriptions. I thoroughly enjoyed it and want to share it with my readers!
In the end, we will remember not the words of our enemies, but the silence of our friends.


Martin Luther King Jr.

US black civil rights leader & clergyman (1929 - 1968)

NJ Back in Action program

NJ Protection and Advocacy has a web page for the program Back in Action for those who wish to sell or donate assistive devices. Click above to find out more!

Via William Gaventa, Inclusive Ministry list serv (thank you Bill!)

Saturday, January 13, 2007

Why exclusion continues....

Exclusion exists because the majority of people act in ways to sustain it.

We are facing a time of great energy in the disability community. Many of us are aware that as our voices clamor to be heard , there is a backlash. This comes in the form of labeling disability advocates as troublemakers. We are accused of having a sense of entitlement when we point out injustices . We are told that we should be happy for what we already have in a threatening tone that implies even that can be taken away.

None of this matters. It is simply chatter, the type of noise that comes from a balloon as you deflate it - the dying cry of outdated beliefs and prejudices toward people with disabilities.

It is time to shake off our naïve belief that society is going to open its doors to us if we simply knock. What we are facing is not a matter of "showing up in life", although that is certainly a necessary ingredient toward a solution. We deal with something much larger at work-societal beliefs and attitudes that are negative toward our state of being disabled. These negative beliefs could disempower us.

But they don’t, because those of us with disabilities are able dealers, resourceful as a matter of necessity as we have had to adapt to a world that gives us unequal treatment in areas ranging from its architecture to its social programs .

By setting and maintaining seemingly insurmountable obstacles, our society has instilled in us the very traits we need to face the discrimination it is so reluctant to admit. We are resilient, strong and courageous.

Now is not the time to back off. Those of us who have accessible homes and jobs should never forget that those rights were achieved by people with disabilities who were courageous and fought for them. There is much more to accomplish, because those of us who have these things are few and far apart.

We must wade our way through the current waters of change, always keeping in mind the greater common good for our next generation. This means keeping an open mind not only toward the issues at hand, but toward each other.

Much of the problem lies in the objectification of people with disabilities. We are seen as not having the same needs and desires as others. This is a far cry from being included in society.

When our presence is simply tolerated, it implies that it is at the largess of others, i.e. the able-bodied world . This is not inclusion, which provides an equal opportunity to participate.

The assumptions, beliefs and practices of our society have to change. We do not want to be treated as the "other", but to be called by name. We do not want to be seen as a problem, but as an asset.

Let us continue to speak up for those who cannot speak for themselves and to open new doors .

The Gimp Parade: I am tired

The Gimp Parade: I am tired

Blue writes about how fear and hatred of people with disabilities continues - and writes eloquently about how recent events show this. This is well worth reading and I'm so glad she posted it.

The Gimp Parade: Saturday Slumgullion #23

The Gimp Parade: Saturday Slumgullion #23

For an excellent roundup of disability posts.

"What's that Mommy?"

I went out to the mall to get some aerobic exercise which is always exciting on a Saturday. When it's crowded, I spend most of my time dodging what appear to be herds of toddlers set loose by their parents in the aisles. Most of them can barely walk and all of them turn to me, point at my wheelchair and gurgle something like "what's that mommy?"

Sometimes they hop into my lap which, although it's amusing, really slows me down. I have to put them down as they're screaming "I want a ride !"

At least they can see that riding in a wheelchair is a superior form of mobility. I think it's because they haven't had a chance to swallow the erroneous assumption that being in a wheelchair is some tragic fate and that people in wheelchairs are objects of pity.

Instead they see the wheelchair as an object of curiosity. To them it's a new and exciting adventure- one they don't want to miss. The kids that are old enough to talk sometimes ask me if it's a bicycle.

Their parents often look confused and even worried about their enthusiasm for my wheelchair, not realizing that the kids have it right-riding in a wheelchair can be exciting and fun.

It's all about perception and the way we frame things.

So as much as I would prefer to get around the mall faster, I must admit that when I have to stop for toddlers, their reaction is always a reminder to me that life should always include time for new adventures and a sense of curiosity.

Dans le noir restaurant, London

Disability - and how we deal with it - is a matter of perspective.

In the Dans le noir restaurant in London, the servers are blind and the patrons eat in the dark. Their web site (click above) describes the experience for the diners as having to trust their blind server.

Friday, January 12, 2007

One can never consent to creep when one feels an impulse to soar.
Helen Keller

Larry King: Joni Tada appears...

..to discuss the need to treat people with disabilities with respect - regarding the Ashley X case. She brought up the issue of cost- saving - and how that is used to justify treatments that are repugnant to many of us in the disability community.

Haven't heard about Joni? You can read about her ministry here.

Disability blog carnival

Go check it out - disability and relationships is the topic!

"Churches neglect older folks - potlucks won't do"

Via Christian Post, this article posits that churches are not including the senior population of baby boomers, including the 50 plus crowd, in their ministry.

I don't find this to be true in my parish. We have many seniors actively and visibly involved in activities, service work and social activities. They are a vital and important part of our staff and congregation.

Many of the parish's programs, including the caregiver program, addresses the needs of the elderly and their families. I have also witnessed an informal network of seniors helping each other out - which I believe meets the needs of some of the independent older parishioners who find themselves "in the same boat" so to speak, facing health issues, changing their housing, dealing with social isolation, etc.

I pray frequently for discernment regarding a ministry for the disabled - and its intersection with elderly issues. They overlap, yet some issues for people with disabilities are different. I have spoken at our caregiver group and worked to build some resources for them on a very very informal basis because I have access to some information. However, those experiences have made it clear to me that parishes have separate ministries for the disabled for very good reasons.

The Catholic church has encouraged people with disabilities to start ministries which are sprouting up, side by side, with programs that are geared more toward elder care and elder needs. This is a positive recognition that there are different needs for those with disabilities. As time goes on, we will see more growth in this area. But those of us with disabilities have to step up to the plate and get active. It will also take time to develop a ministry in an individual parish - unless one single person wants to do it alone.

The joke I use with this is "I can't have an inclusion committee of one!" as I look for others wanting to start a disability ministry. However, I believe, as my Quaker friends say "The way will open".

This is an exciting time of social change as the baby boomers age - one that is rife with opportunities for ministry and service.

Thursday, January 11, 2007

"He's blind - I married him anyway"

Via Planet of the Blind, Connie writes this excellent post dealing with erroneous assumptions made by some folks about a relationship with a person with a disability.

Disabled boy's parents sue utility company...

..for shut off of services, causing his ventilator to go off until his parents could rig up a backup generator. The shutoff took place despite the fact that their file was marked special needs and apparently late payments were made up. Officials state that mistakes get made because so many personnel are involved - click above to read.

"Without Apology" - out on DVD

Via listserv Inclusive Ministries

The movie "Without Apology", about a family whose son with cognitive limitations was institutionalized (and later sent to a group home after abuses in the institution were revealed), has been released on DVD. The movie is a step in the long process of revealing the family's secret that they had a child with a disability. The story is told from the view of his sister who indicated that her brother was never mentioned at home once he was sent away.

Anyone seen this movie? I'm looking for a review by a person with a disability. If anyone is interested, you can email at their website for a free copy of this movie on VHS to view.

Wednesday, January 10, 2007

Children with disabilities need a voice

In a BBC article, the children's Society is quoted as saying that children with disabilities who live away from home need advocates to speak for them, listen to their needs and keep them from becoming "invisible". It is pointed out that they are often deprived of having the right to say anything about simple needs, sometimes due to communication difficulties.

Volunteering - it's a good thing!

I just received an e-mail from a teenager who used to volunteer to help me through a local program. She would come every week and spend a few hours with me and we would do activities and projects together-or just talk sometimes. This year she is a senior in high school and very busy! However, she wrote to ask if I would like to get together with her some afternoon and catch up. As I read the e-mail, I remembered her from three years ago when we first met and she was just a sophomore in high school. I can't wait to see her now that she is a grown-up high school senior.

I have been in this program where teenagers and people with disabilities get together weekly for almost 8 years now. During that time, I've worked with three teens. It's always been a mutual learning experience. We cracked jokes about my disability at times-I teased one young man that I would make him go on a cable show with me to do quadriplegic cooking! There are times they have come to me with issues in their life that are pretty serious and I'm playing the role of a mentor. Then there was the time when one of my teens accompanied me on a ski trip. We had a blast.

Whenever anyone asks me who gets the most out of this program, I find that difficult to answer since both of us obviously do benefit. And as I watched each teenager grow up and move on with their lives, I feel very blessed for the time we've spent together.

NJ seeks to strike language that bars voters with mental disabilities

Via Reuters The proposal: Archaic language barring people from voting is to change to a competency standard.

"Modify the system, not the person" -

Via DREDF On the Ashley X issue.

forwarded by William Gaventa

reader comment - deaf teen's dog barred from school

gen x revert writes :

The East Meadow school district is clearly breaking the law. There is now an investigation being started but it may take awhile to resolve the situation. Although the school says every accomodation has been made for the student, which is true, it is still illegal to bar the dog. Looks like education is lacking in this school, and not necessarily on the students' part.

Catholic Carnival is up!

Tuesday, January 9, 2007

Ski Therapy for Soldiers Via YouTube



"This is the first mountain they face", an instructor points out while talking about how skiing helps disabled vets deal with their disabilities and fears.

bookshare.org

Are you unable to read print materials due to a visual or mobility disability? Check out bookshare.org!

I've belonged there since its inception. It provides books that you can download and read on your PC or Mac for the small contribution of $50 a year. Over the years, bookshare.org has grown - and now provides the NY Times Best seller list as well as newspapers. Their books are listed by author, title and genre (such as literature, science fiction, biography, etc.)

If you already belong to the National Library for the Blind, joining is easy! So click above and start reading.

Monday, January 8, 2007

more on universal design

via the Washington Post

Design for Everyone, Disabled or Not

From the NY Times, an article forwarded by Reverend Bill Gaventa about the importance of universal design...and it's ability to help PWD regain their dignity.

A Mother and Father's Betrayal

David, over at Growing up with a Disability, blogs about the Ashley story - with a very powerful post about his relationship with his parents. He also links to a number of other bloggers who have posted on this. Well worth reading.

New online Catholic newspaper: Catholic California Daily

Stephen Hawking plans space flight

He plans a preliminary zero gravity flight in an airplane first and then a space flight in 2009.

Sunday, January 7, 2007

I'll have a steak, but no pity on the side please....

Pity (definition ) Sympathy and sorrow aroused by the misfortune or suffering of another.


I don't know about you, but it does nothing for my appetite when I'm eating out and people at nearby tables give me looks of pity.

I realize I am in a wheelchair and I use a special eating utensil. But I live with those things every day, so when people cast me looks of "sympathy and sorrow" aroused by my supposed misfortune and assumed (on their part) suffering, it makes me gag.

Can we talk?

Perhaps these folks might stop and realize that just because they are seeing the person with a disability (PWD) for the first time - eating out or whatever - it does not mean that the disability just occurred. Chances are she has been like that for years - and doing fine by the way without their sympathy!

I'm being tough on those people who are casting me looks of pity, but I really wish they would go home, rent a Sunday night melodrama and save it for that. They need to get over it. They need to grow past limited reactions like pity which are indulgent for everyone.

It's indulgent on the part of the observer, who uses it to distance himself from the person with a disability, whether he knows it or not. Pity objectifies people. It makes them "others", as in objects of pity.

Those of us with disabilities know that self-pity is indulgent and useless. It is far better to cultivate resiliency, self-empowerment and acceptance.

So, please, don't indulge yourselves in front of us. Hold the pity.

Do pass the ketchup, however. And a smile would be great.

School bars Deaf teen's assistance dog

You don't need that wheelchair....the (hidden) built in pre-existing condition clause

One by one, I've watched my friends being denied the wheelchairs they need to go to work by their insurance companies.

Instead, insurance companies offer them heavy, cheap alternatives which will make it difficult , if not impossible, for them to work full time, do their errands and get around. This is not just about whether the wheelchair is made of aluminum or titanium. One friend was told she was not eligible for a wheelchair under 30 pounds. Due to a birth defect, she has very short arms. I have no idea how she is supposed to propel herself to her full time job, mange around her house (where she lives alone), run her errands, etc. etc. in a chair that heavy.

So what's the point of having insurance for medical equipment if you do not get assistance with buying it? If they are going to deny us basic and necessary equipment, why should we pay premiums to insurance companies? It's like a built-in pre-existing condition clause that never goes away!

Of course, even if you are approved for a medical purchase, you still have to pay a per cent of the cost. So you're budgeting that in. When equipment is denied because in their view you don't need it (but you do), then you pay 100 per cent.

We could, of course, try using skateboards. It's cheaper and then we wouldn't have our finances tapped to the tune of thousands of dollars by paying for a wheelchair every few years. It certainly would be easier to push than those heavy wheelchairs.

I think perhaps that might make a nice visual at one's job, to show up on a skateboard and explain why. Of course, then you'd need an assistant to help you reach the file cabinets.

Saturday, January 6, 2007

How to Speak a Book

Via Open Book - Amy links to Richard Powers' experience of writing on a tablet PC using speech recognition and handwriting recognition to make corrections - and his thoughts on the process.

Changing colors for the time after Epiphany....

We're back to green here at Wheelie Catholic.

I always start early.....mea culpa.

Christian Faith in Art:CSS in Rome

Sr Edith from Monastic Musings writes, along with her students, about their trip to Rome . I highly recommend their blog for a vicarious spiritual tour (which also includes some wonderful observations about day to day life and customs in Italy).

A reader asks: What is ableism?

A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.
Who except God can give you peace? Has the world ever been able to satisfy the heart?
-- St. Gerard Majella

Praying on wheels

How many times I took long walks during my teens and early twenties, pondering the issues of my life - career, relationships and faith. As I walked, I prayed.

In my early thirties, I remember playing my guitar (I used to be a classical guitarist before my accident) and singing along in prayer as I played.

After my accident, my prayer became more simple. It often consisted of saying one devout Our Father because my energy was low. Or perhaps I would read the Bible and pray afterwards. I remember reading passages from Job, searching for answers to the doubts that arose when my life was disrupted by my spinal cord injury.

Those answers did not come in the form I expected. I never thought that Bob, who came to my home to sell me a wheelchair, would be the agent of change. He was a vet, about twenty years older than me and an ex-high school teacher and coach who was coping with a progressive neurological disease that had him using wheelchairs. He played wheelchair tennis and began to recruit me after he saw me watching ESPN on several visits.

"You like sports?" he asked.

I shrugged. In the months after my accident, I wasn't sure I liked anything.

He dragged me outside to try his handcycle which was the first time I moved fast in months. He ordered a speedy wheelchair for me and dragged me over to a tennis court to play tennis.

I thought he was nuts.

But the day after, I took myself over to the tennis courts and hit bucket after bucket of balls over the net in anger. The high school tennis coach came over after two and a half hours and asked me if I would like lessons, noting that I appeared to be 'fit'.

And so it began. Through wheelchair tennis as an outlet, I met others in wheelchairs and my healing began.

I certainly never thought that I would learn to pray while rolling myself around in a wheelchair. That was never in my life plans. It's not that much of a change. I still pray about the same issues - career, relationships and faith.

And I thank God that someone like Bob cared enough to extend his hand to me.
"When the solution is simple, God is answering."
Albert Einstein

Friday, January 5, 2007

In the news: 12 year old special education student charged with disorderly conduct

... after wetting her pants.

After helping her class with a holiday lunch in the library, the student refused to leave and was confronted by the principal whereupon she wet her pants. The school is taking the position that she deliberately wet her pants.

The police were called and she was charged.

According to her mother, the girl is afraid of the principal.

I can see why. I'm a bit afraid of him too just from reading about how he handled this.

How does the school intend to prove, by the way, that she "deliberately" wet her pants? Seems like a ridiculous response by the educators and a ridiculous charge.

New Gallaudet President Appears on CNN

Robert Davila, the new President of Gallaudet University, is appearing on CNN right now discussing the issues and problems surrounding the protest and his appointment. The interviewer , Kyra Phillips, mentioned that she has Deaf relatives and brought up the topic of Deaf culture.

Comment - Which floor are we on?

As a parent of 2 young adult children with lifelong disabilities, I appreciate your ability to recognize this all to common behavior as what it is - ableism. A huge challenge for young people who grow up with a disability, and have only that frame of reference to draw from, is to develop a healthy self-love, recognize and deal with rampant ableism, and somehow learn socially appropriate behavior in the midst of the conflicting messages. As you probably see with your nephew, it is really tricky, if not downright impossible to figure it all out. The ableist messages that our kids get from the "authorities" in their world - church leaders, teachers, scout leaders, coaches, etc - are pervasive, damaging and so hard to counter. How's a kid to know what the truth is?

Janet

Our viewpoint in mainstream media on panels

Sometimes I think PWD should be the ones with their faces on milk cartons, listed as missing.

Why? Because we have been, for the most part, faceless in the mainstream media.

I watch news shows quite a bit. I used to have them on all day before I received my voice activated TV remote , mostly because I couldn't change the channel once it was set. So during those many many hours of watching , I noticed something.

When a hot topic comes up, many of their show hosts bring in a panel consisting of various viewpoints. There will be, for example, a Republican and a Democrat. If it is an issue involving school violence and video games, for example, there will be two psychologists, one on each side of the issue. There may be representatives of advocacy group or members of a community .

But one thing I noticed on several specific topics pertaining to those of us with disabilities is that this practice was not followed. For example, when the court case ruling that currency is inaccessible to the blind was discussed, there was no representative from the disabled community. I saw no advocate.

When the Ashley case was discussed yesterday, there was a disabled advocate asked to speak on the Nancy Grace show. (Click above for transcript).

Why, for the most part, are our faces missing from the screen? The media have not accepted, nor have they been pressured to accept the fact that the disabled have our own culture and identity - and although there are differing viewpoints within that culture, we have strong and strident voices among us.

Let us remember that in cases dealing with issues where people with disabilities are involved who cannot speak for themselves, such as the situation with Ashley, those of us who can speak up need to. When we aren't invited onto mainstream media, then let us consider what we need to do to be heard through other media sources.

Our opinions matter. Our culture is as legitimate as any other.

Which floor are we on ?

Mouth magazine has an interesting article this issue by Reverend Rus Cooper-Dowda about how a person with a disability (PWD) is treated by co-workers and others in an elevator.

The article mentions things happening in the elevator such as the author being asked if she knows how to run the elevator. It also alludes to behavior by co-workers treating her differently in front of others (i.e. as more disabled) than when they are in a close work setting. Due to the degree of familiarity with these people, she challenges this behavior.

I've had this happen to me, where folks will treat me differently when we are alone than when we're in a bigger group. Clearly the dynamics are different in a group, but it is disturbing when someone treats you completely differently in a group setting and then, when alone, goes back to an assumed familiarity with you that they won't own in public.

This can happen, not only in elevators, of course, but in church. I've had great conversations one-on-one with folks, only to find myself in a group setting with them and their behavior changes. This occurred recently when I ran into a man I saw weekly at a bible study in my church for months. We were congenial and spoke quite often about different issues, including personal ones.

However, when I ran into him in a more public setting at church, he denied any familiarity when I approached him and greeted him . He called me "ma'am" as if he had never met me before. Other people standing around looked over at me and, quite frankly, it was awkward for me.

If I didn't have the awareness I do of disability issues, I would have felt like I acted inappropriately by greeting him in a way that acknowledged that I knew him. Certainly he didn't not recognize me! The wheelchair is a dead give-away.

But I know what this is - ableism. And just as the co-worker issues need to be talked about, it needs to be addressed in the church setting as well.

As I struggle to achieve inclusion in my parish, behavior like this is only discouraging to me. I have enough life experiences to understand that some people will respond like this. I don't take it personally. After all, each person is responsible for his contribution toward inclusion - or his choice to thwart it.

Inclusion cannot happen without the willingness of people to stand strong in the face of what others might think.

Thursday, January 4, 2007

"You have to use a lot of creativity out there."
Jim Thorpe

SmartNAV 3 -hands free mouse


Just received a SmartNAV 3 to help me move my cursor and to use with an onscreen keyboard , which gives me complete control of the computer hands free. So far I like it. I'm using a dwell feature to click and it works well.

I put the "dot" which controls the cursor on a piece of duct tape which I then attached to different spots (my forehead, glasses, microphone) just to experiment with placement. I like it on my forehead best so far. That seems like it's the most accurate.

The camera sits well on my laptop. Sometimes I forget it's there and it scares me- it looks as if an alien is crawling toward me with red, green and blue glowing lights! But then again I've seen too many movies.

This will be a great supplement to Dragon Naturally Speaking.

It's awesome for surfing the web! I am having no trouble getting around at all without any training.

I give this 5 stars.

This just in...

CNN is doing a poll on the Ashley issue -however their "take " on this is all wrong.
The question they ask is who should have the say in medical decisions for the disabled - caregiver or ethicist?

Probably because the news stations (the ones I saw anyway) had all able bodied guests commenting on this issue rather than bringing in PWD (it IS a disability issue) it never occurred to anyone that Ashley should have her OWN advocate.

And check out this misinformed headline

From the Independent:

"Brain- damaged girl is frozen in time by parents to keep her alive"

Now these measures are being justified as life saving. Quite to the contrary, Ashley's disability does not limit her life expectancy.

BBC article on 9 year old Ashley

I shudder as I read this quote :

""The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

So where does this end? Do we maim all kids with cognitive limitations by keeping them frozen in childhood?

Since when is it OK to say that women with cognitive disabilities are "grotesque'?

The Ashley Treatment

Parents of a severely disabled girl have opted to use medical treatment to keep her child-sized, performed a hysterectomy, administered drugs and took other measures to stop her sexual and physical development. They claim in their blog (link above) that this treatment will ensure their daughter better care and it is not being done for their convenience. They also say they do not want to get involved in a controversy over this topic.

However, their blog goes on to give resources to other parents after mentioning that Ashley is the first child to have this treatment. So I find their statement that they want to avoid controversy as well as the overall tone of their blog to be disingenuous.

It is deeply disturbing to me that doctors in Seattle went ahead with these treatments without any legal parameters. The ethics board at the hospital made this decision.

In response to someone raising the issue of the dignity of Ashley, George Dvorsky, an ethicist, responded that, due to her cognitive limitations, Ashley is not capable of feeling indignity.

Those words make me shudder. They strip every person with a cognitive disability of any right over his or her body.

Those of us with physical disabilities need to take heed, if we haven't already, of the many infringements occurring to our rights, not only on the issue of euthanasia, but in cases such as these.

Without laws in place protecting the rights of the disabled in situations such as this, parents will, with the aid of the medical field, have unfettered rights to take extreme medical measures to alter their childrens' bodies. This raisies moral and ethical questions that should be raised before such treatments are legally allowed.

People would shudder if this happened to a child without a disability. The parents of Ashley make the superficially appealing argument that parents who do not have special needs children won't understand their position.

I am more concerned about the fact that Ashley cannot speak for herself.

But we can.

Wednesday, January 3, 2007

iQuad

I have a great marketing idea. We all know the momentum behind the iPod. Not only do people buy iPods, now they are buying multiple iPods. Why? They need one for traveling, another for the gym - you get the idea.

And for each of these iPods, they need accessories. So there are cases - silicone cases, leather cases, neon cases, zebra patterned cases with feathers, cases with straps. And there are docks to put the iPods in. There are car radios to hold iPods and boomboxes.

So I'm thinking that those of us who are quadriplegics should try a new tactic to get more products made for us. Why not just call ourselves "iQuad'?

It's catchy and it's shorter than quadriplegic. We can even snap some shots of quads in silhouette in different colors and do some marketing just to get our image out there. Photo after photo: iQuad, blue, iQuad, red, iQuad orange.

Once that becomes more mainstream, then we go for the accessories. You have the iQuad phone, the iQuad computer and software line, the iQuad eating utensils, the iQuad appliances. All designed for those of us with quadriplegia- but how much more interesting to design a product with the brand name "iQuad" than some rehab product for a high cervical spinal cord injury? There's no comparison.

And the highlight of all of this would be designing the iQuad robot - that customized robotic assistant all of us with quadriplegia dream about, who could assist us with the mundane tasks requiring fine motor movement. The profits from the iQuad idea could push research for this robot forward.

How proud all of us would be to wear T shirts with our iQuad logo, knowing that although we may be excluded in some parts of society because of our disability, we are carving out our place in corporate America by exploiting the brainwashed masses who jump at the word iPod - and are assured success simply because iQuad rhymes with iPod! People will purchase iQuad products even though they have no use for them, not being quads themselves. But it will be cool to own anything bearing the iQuad logo.

So prepare yourself . This is going to be big. Think multiple iQuads, not just one. Picture an army of iQuads in Times Square on the big screen.

And remember - when it's cool to be a part of the iQuad movement, we quads will be the real thing.

Tuesday, January 2, 2007

Images of Dwarfism

Did you realize that there are different forms of dwarfism?

Gary Parker, a professional photographer, has taken pictures for the Little People of America for the purpose, among other things, of educating the public about dwarfism. Please click above to visit his gallery. (Note: These images are copyrighted by Gary Parker and not for use in the public domain.)

Catholic Carnival - Auld Lang Syne - the 100th edition!

I encourage you to take a moment and click on over to read the 100th edition of the Catholic Carnival. Thanks to everyone whose hard work makes it possible.

Why am I calling my television silly?

I received an Invoca voice activated TV remote 3.0 for Christmas from my sister. It's a great gift, especially for someone who cannot turn the channels on a TV with a conventional remote.

It takes rechargeable batteries, which I didn't have, so I ordered those online and just got them today. After charging the Invoca remote, I synched it to my TV and cable box via the automatic function. Once that was done, I was ready to program some commands in.

I started with the ones in the brochure, such as "channel up/down", "TV power". All went well. Within a few minutes, however , my TV began to act as if it was haunted. Channels changed without warning - the TV went off and I swore I heard a voice from inside saying "I'm baaccckkk!" (OK that was my imagination.)

I decided, however, to set it up to use a keyword to precede each command so that the noise from the TV wouldn't cause the remote to "take over" my TV. You can imagine the fun it was to pick a keyword. How tempting to choose things like "Cyborg", "Robot", "Jeeves" , "HAL" - but I tried quite a few and realized I needed a distinctive word.

"This is silly, " I said to my cat. Then I tried the word "Silly" and it worked great. Silly it was.

So the keyword "silly" precedes everything I say. I am saying phrases like "Silly- Louder", "Silly- That other Sports channel", "Silly-Quiet" (that's the mute function). It's rather fun.

I can even program macro strings into this, to do things like play a VCR tape. You just enter a string of commands which are clearly outlined in the brochure. It's quite easy.

So as I sit here watching football instead of just one channel that I can't turn off, my only complaint is that when the announcer remarked "Now that's a silly play" the channel switched to Bravo. Not a problem.

I say "Silly- previous channel."

I give this 5 stars.

Dignity of the person is the foundation of human rights

Via Vatican Information Service - Pope Benedict's New Year message

Monday, January 1, 2007

Starting the new year with Christ

from Monastic Musings- Sr Edith shares from Rome!

Mom, there's a dog - in my dorm room...

At Rutgers, University of Delaware and Rowan University , students raise puppies before they are sent for their final phase of training as guide dogs.

new book:Ed Roberts - Wheelchair Genius

Geared toward younger and middle school children, this book
is being sold by the Institute on DIsability Culture.

This book is available on CD. The CD is available for $20.00 including Shipping & Handling within
the U.S. and $30.00 for international orders. If interested, please
pre-pay to:

Institute on Disability Culture
3029 Lowrey Ave., P-2104
Honolulu, HI 96822

Inquiries may be sent to disculture@gmail.com