It tastes better watching sometimes...

"Can I order this sundae just the way I want it?" my nephew asked.

"Sure, kid," the guy behind the counter said.

"Okay. Vanilla ice cream, soft." Pause. " Chocolate sprinkles on that. Whipped cream on top." Pause. "Rainbow sprinkles on that. And chocolate fudge sauce."

Several minutes later, my nephew lifted his spoon, stopped and said "Look at that. Just look at it." And then he dug in.

"Is it good?"

Through a mouthful of ice cream he said "Beyond good. Fantastic. Awesome. The ultimate sundae."

Love those sundaes that taste better watching someone else eat them.

What she said

I just finished reading an honest and heartfelt post by Elizabeth about some Christians who backed off after she told them she had a terminal diagnosis. She writes about how they avoided her. She writes about how they said they would pray for her and hope for a miracle..and then backed off from her and how hurtful that was. She writes:

I AM a Christian so I have nothing against prayer, it is just I never expected “I’ll pray for you” to be synonymous with, “I am about to sever all communication with you.” And indeed since then I have noticed that for some people, people with ample availability to do more “pray for you” actually came with a pride in their apparent helplessness ("sorry, dedicated to the XXXXX Ministry, I leave this in our loving Father's hands").

For those who don’t know the story of Jesus after “the last supper” Jesus went up to a garden taking with him three of his closest friends. Why? Because he knew he was to be in pain, and soon die and was scared. He went up and prayed, crying and so depressed that he wished to die and when done returned to find his friends….asleep. With a certain anger and desperation he said, “Can’t you even stay awake with me for one hour?” Now THAT, was Jesus’ prayer to his friends. A prayer saying “be with me, comfort me.”

I'm going to go read a book because I can't put it any better than she did.

Loveliness of Rosaries ...

..is now up at Just Another Catholic Pondering.

Sarah has written a beautiful post including perspectives and thoughts on the rosary by many contributors for a loveliness fair on the rosaries. Here's what it's about:

Praying the rosary is that moment when we encounter our Sweet Mother on the journey and share a quiet conversation with her. In the month of Our Lady, let's share our stories of her rosary and how it has shaped and formed us on our journey. And let's share the simple loveliness of rosaries themselves.

Check it out. (And Barb has been kind enough to donate a beautiful rosary for some lucky person who leaves a comment.)

Pistorius wins appeal

Don't have time to do much but a link and it was a unanimous decision.

Hollywood Quad videos - now on sidebar

Meet Jim Troesh aka The Hollywood Quad.

You may remember him as Scotty from Highway to Heaven years ago. Jim's been acting and producing for years now, and his work has gone a long way toward opening doors for actors with disabilities. He's now working on a series that I'd like to help get the word out on called The Hollywood Quad.

I've added video clips of Jim Troesh's Hollywood Quad series to my sidebar- about halfway down....enjoy!

How far is far?

Whenever I run into people (not literally) in my power chair, I'm inevitably asked "Do you know what the price of gas is?"

I nod and say yes.

"But do you realize how expensive it is?" they ask me. And then they get into their car to drive home three blocks.

I often pass them at the traffic light and wave as I hum by.

I'll admit that I'm going green because I can't fit my power chair into my car. But the reality is that, in the same way I can use my chair to get to stores around the corner, other people can walk or bike. I've learned I don't need a car for many things I used to use a car for.

But it's fascinating to watch how people react to walking. Recently a friend and I walked up to a coffee shop. When we got home, she said "That was really far. I don't think I'll ever do that again!" It was only six blocks.

It doesn't do any good to discuss this with her because, inevitably, she says to me "You're sitting down. You don't know how far it is."

I haven't forgotten how far far is by foot, however. I know I've defined it differently over the course of my life. Far seems to get closer as one ages. The further you are from far, the more likely you're fit. However you can redefine far by walking and making far closer again.

Just because I use a power chair doesn't mean I don't know that. It's like babying along old batteries in a piece of mobility equipment. Far is further with old batteries than new ones.

It's still better than the price of gas.

The Economy Goes South - Really-

..and sends postcards.

Introducing the blog Alive and Young! to the blogroll.

Fly among the stars....

Microsoft's World Wide Telescope hit the web recently and I decided to give it a try, although the computer specs looked as if I might fall short.

It worked fine with 1GB RAM and Windows XP software. It's an impressive piece of work that includes the ability to look at planets, constellations and even includes film clips to teach basic astronomy concepts to help newbies get oriented.

My first reaction was not much different than my visit to a planetarium on a class trip when I was 8. I remember sitting there, looking up at the ceiling and saying "Wow!" and realizing for the first time how much more was out there beyond Earth.

World Wide Telescope is more high tech and more immediate an experience. It fills your computer screen with images of the sky, if you choose that view, and you can zoom from constellation to constellation, zoom in and out at will, and click on other related information.

It allows you to control a planetarium. If any one ever dreamed of being an astronaut or wants to fly around the universe, this is the program for you. Show it to your children. It's a great teaching tool combined with a built-in 'awe' factor.

Tennis players don't quit, they retire

Yesterday Justine Henin retired from tennis. She's 25 years old.

She said she was no longer playing at the top of her game and needed to move on in her life, but her announcement stunned the tennis world. Some say she's quitting. I know better. I didn't quit tennis - I retired. And so has she.

Unlike my retirement from wheelchair tennis, people actually know she's retired. I don't envy her. I was able to roll quietly away from the court, stow away the duct tape and my tennis rackets and escape any comment or scrutiny.

It's not easy, no matter what people say. I wonder how Justine will feel when certain times of the year come around. For me, spring meant upping my training, preparing for the first tournament down in Lancaster PA. It meant sending my tennis wheelchair to the shop so the tires could be trued, fixing ripped upholstery and packing a travel bag I could use all spring, summer and fall.

It also meant I was going to see my tennis friends. I can still do that, although I've learned it's not the same. I miss the sound of tennis balls, the smell of tennis balls and even the humor that tennis balls brought into my life.

Do you realize how inane it is to attempt to hit a tennis ball across the entire length of a court when you have quadriplegia? Do you realize what a rush it is when you find out there are ways to make that happen?

But- oh - the comedy involved when two beginning quads play each other! And then, after practicing, the beauty is stunning.


You can't quit from that. You wouldn't. Only the word retire works, because once a tennis player, you'll always be a tennis player.

[visual image: Two male wheelchair tennis players hug each other over a net on a tennis court.]

Sometimes blogging reminds me of....

...the running scenes in Forrest Gump.



Maybe if Forrest had a blog, he wouldn't have run after Jenny died. I don't know.

My first blog ended suddenly, just like Forrest's running. I woke up one day and decided it was time to start a new one.

I wasn't sure what Wheelie Catholic was going to be about. Content wasn't ever an issue, however- what became an issue was which content to put in. There was - and continues to be- a wealth of topics to discuss. I found that Catholics were receptive to the idea of a blog where parents, people with disabilities, and other members of the church could find information or discuss topics. I began receiving emails from readers with disabilities on disability topics (much like those running after Forrest) asking for information on topics and/or relating to what I was writing.

I've found that there's a lot to be said for Forrest's technique, where you just keep running, no matter what's going on around you. Even on days when you're tired, things around you seem to be falling apart, or other distractions jump up in your face, there's merit to acknowledging that - hey, that's life. Keep blogging.

I think people ran after Forrest because he kept running. He kept moving. That was the thing that attracted them. They wanted to see where he was going. But it wasn't about the destination. It was about the journey.

I saw the film August Rush last night. It had more plot holes in it than a piece of Swiss cheese. But when it was over, the movie still sent its message. In fact, the more implausible it became, the less I began to care. There was no point in trying to make it plausible, I thought. Why begin now? Tying up the loose ends would have added to the implausibility.

I read that when writing fiction the best thing to do is choose what's least likely to happen next. I understand that approach in certain genres, but if you're writing character-driven scenes, there's that urge to give a favorite character what she wants. As Hemingway said, if you're a good enough writer, you can get your reader to buy into what you create, accept your story as truth. I think that has more to do with good fiction than anything else. If the reader cares what happens to the characters, then implausible events might be excused - even a character running without having a destination.

Blogging through implausible events is important.

David vs. Goliath...

I mean David vs. David....on American Idol finals, that is. It's down to the last two and either one would make a great winner. But here's my favorite:

Mixed Messages

a new short story over at A Different Light

When 16 year old Ray takes a summer job to learn to be a mason, his experiences one afternoon change the direction of his life

Young Adult/Adult

"I suspect that you will not hear from many of my fellow caregivers directly ... simply because they do not have the resources to take time away from their loved ones in order to come before you."
Former Supreme Court Justice Sandra Day O'Connor, while testifying on Alzheimers and how it has affected her family since her husband's diagnosis before Congress

Waving at Jackie O....

This video tells the tale of a couple and Jackie O.

It's an interesting and amusing story about perception and recall from different points of view.

h/t to Drawn

Talk To Me

Rachael has some things she'd like to say about assumptions people make about disability, some of which happen because people don't talk to her and only see the disability.

Which leads to incidents assuming she doesn't have her own mind, like when she asked for a tatoo.

And a young poet receives a computer so she can compose independently via eye movements, thanks to a Swedish company.

When life doesn't resemble fiction...

In a Charlies' Angels move, actress Drew Barrymore chased down a hit and run driver who slammed into her car yesterday. (She wasn't injured in the accident.) Barrymore was able to provide police with the car's license plate number. I also remembered the movie Barrymore did about 50 First Dates yesterday, where an amnesia patient kept having to be reminded every day of who she was, where she was and all the other details of her life.

It was because I was reading a short story in a scifi magazine dealing with a plot line of a doctor being asked by a colleague to hire a young woman who was institutionalized due to the same kind of amnesia so she could live in the community. Although I haven't finished reading the story yet, I was struck by the doctor's response when asked: How will I watch out for her? How will I protect her from others who will exploit her?

People won't find out, the other doctor assured her. No one can tell by looking. After all, she's smart and she's good looking so it would be a shame for her to stay in the institution - and you wouldn't know about this condition...

This dialog, like many other fictional works I read, reflects our society's values and mores. Since no one can see her disability, she can manage to function is the assumption reflected here. Other assumptions: if she is pretty, if she is smart, in other words, if she has other superlative qualities, then she deserves to live in the community. The doctor even says that, for those reasons, it would be a shame for her to remain institutionalized.

I'd like to address these assumptions:

-I find the assumption that people with disabilities somehow need to have a superlative quality to live in the community as insulting and degrading to the concept of human dignity. After all, we don't ask able bodied people to pass a "pretty" test, do we? ::Looking around::: uh, no.

-It is sometimes true that there are some people who do exploit those with disabilities, but I tend to think that many of them are the same people who exploit their fellow human beings in general. There are many people who don't. And part of the problem with seeing only the vulnerability of those with disabilities is that it is used as an excuse to limit their freedom.

Far too often, I'm confronted by an attitude that says to me: You shouldn't be alone ever. When I traveled for wheelchair tennis, others staying in the hotel would ask if I was afraid. I asked them if they were afraid. Bad plumbing? Possibly. Someone breaking into the room to take advantage of me? Heck, my roomie and I had more hardware available to defend our honor than they did. We survived an earthquake in California, a few hurricanes and even a hotel fire, by the way.

Now I'm not talking about exercising reasonable caution. All of us need to be mindful, including those of us with disabilities, about safety issues. I happen to think that using my power chair at night on a dark road would be foolhardy and don't do it, for example. I also wouldn't walk around at night by myself if I was able bodied. But the overlap in choices I make based on whether I have a disability or not isn't as clear as some might think.

In other words, I don't wake up in the morning and ask myself "Okay what can't I do because I have quadriplegia?" It's not like that. My life isn't dramatic. It's downright boring some days just like everyone else's. I work, I watch TV, I eat, I hassle Meredith - well you get the idea. I do have attendant care. But I'm not the only one in society who depends on physical care done by others. Some able bodied people choose to hire personal assistants who do a myriad of tasks.

What truly bothers me with these assumptions is that they float around us and our lives, often unconscious. And, meanwhile, we lose opportunities for common ground.

Oh and Drew? That was a bit dangerous to do, although I admire your spirit.

A blogger asks: How do we build community?

The "reason" given for exclusion varies from place to place. Inclusion, it seems, is illusion, even in 2008 in America today.

Fear and loathing are probably the main motivations for excluding individuals. The idea that we may have to consider the feelings of someone different from self is startling to us. It immediately raises to our consciousness our own bias. Something we don't want to acknowledge, or be associated with. Do we prefer "Out of sight, out of mind?"

But a group, City, State or Country is handicapped when not all of its individuals are considered members of the community, much less respected members of the community. The issue then, and which we have been skirting for a long time, is "Who should be members of the community, and how do we respect this commitment?"

How do we build community. How do we value community? How do we open ourselves to the views of others, whom we have learned to ignore, scorn, and speak with contempt about?

Yes, indeed, this is the question. How do we build community?


Read the rest of this important post at from the port.

A NY Times piece features a story about seriously ill and disabled children and a doctor estimates that 70% of those he sees could wind up institutionalized in nursing homes after the age of eighteen based on the present resources and community care.

Institutionalizing those with disabilities, rather than having alternative community care as children and their parents who care for them age, takes them out of our community. This is one of the main reasons that community care, which is less expensive, is being sought on a wider scale by disability advocates and is supported by the USCCB.

Part of building community is accepting that, although our lives may look different to each other, the things that give us meaning and a sense of purpose are the same. Until we do that and embrace the diversity that occurs among human beings, an "out of sight, out of mind" exclusionary attitude will continue to be reflected in our social policies.

In this 2005 letter, the USCCB writes in support of legislation to help attain the goal of community living:


On behalf of the United States Conference of Catholic Bishops, the Catholic Health Association of the United States, and the National Catholic Partnership on Disability, we are writing to thank you and express our support for your legislation, the Medicaid Community-Based Attendant Services and Supports Act of 2005 (MiCASSA), S. 401/H.R. 910.

Our faith calls us to work for the full inclusion of all persons with disabilities in society and in the Church. This is rooted in the earthly ministry of Jesus, whose deep concern for the sick and for the men and women with disabilities he encountered is clear in the New Testament. Throughout history, the Church has followed Jesus’ example through its diverse healing ministry, seen today in the Catholic health care facilities, community health clinics and Catholic charities agencies that serve millions and millions of people in our country.

In recent decades, our Church has come to a greater understanding of the needs of our brothers and sisters with disabilities. In 1978, the bishops issued their Pastoral Statement on People with Disabilities. In that statement, the bishops called upon all people of good will to work with people with disabilities to improve their living conditions and ensure that each individual is able to achieve the fullest measure of personal development of which he or she is capable.

It is in that spirit that we are pleased to support MiCASSA. With the services that MiCASSA would make available, more people with disabilities will be able to move from institutional care to lives of independence in their communities. The legislation will give them the choices and control over their lives they deserve. It will also increase the ability of people with disabilities to fulfill the duty we all share, to contribute to the common good through work, service and participation in community life.




via USCCB site

To read more about MiCASSA, go here.

Rosary Hands...

We met in the tiny chapel at the retreat center to say the rosary together, an assorted group of women Catholics- some living with terminal illness, others with disability, others there to support them as nurses, clergy members, family members and loved ones at the Genessaret Retreat.

I was there as a staff member. The woman next to me shared her rosary when she realized I couldn't hold one due to my quadriplegia. We exchanged a smile.

Around the room, I saw womens' hands holding rosaries -
hands that
welcomed everyone to the retreat,
put together bags containing prayers and cards,
cut up food for others ,
stroked the cheeks of those who wept,
reached out to dance at the party,
and now

held rosary beads, fingers gliding over each bead as a voice raised in prayer was followed in unison.

They were the most beautiful hands I'd ever seen. Hands used in service, reaching out like the hand of the Lord to those in need of comfort, reassurance. Hands that rarely stopped moving, except now to pause in prayer.

It was the first time I really had a chance to see those hands still. It was a Martha/Mary moment.

And, perhaps, the first time I truly understood the difference.

A Modern Day Good Samaritan

A 20 year old man saved a woman's life when her wheelchair became stuck on railroad tracks in Lodi, California.

[Her] frightening ordeal began as she was on her way home from a gathering on the other side of town about 10 p.m. She was heading west on Locust street in her motorized wheelchair and approached the Union Pacific tracks, a route she typically takes.

She could hear the train coming from the south, but Jones said she thought she was still a block away from the tracks, so she kept going, expecting to have to stop and wait until the train passed.

Instead, her wheels buckled underneath her as she crossed, ejecting her from the chair, she said. She looked up as she lay on the tracks.

"I saw the flashing lights of the train, and I just knew I was going to die," Jones said. via recordnet.com


Seeing this in the rearview mirror of his truck after passing her, he ran back, pulled her out of chair and then jumped out of the way of the flying debris as the train struck the wheelchair. This video demonstrates what happened.

So what does he have to say about it? That he was glad to have an opportunity to save someone's life because we don't get a chance to do it that often.

The woman simply called him her angel.

***

That's the story covered on CNN and mainstream media. Here's the other side of the story:

Because of a lack of accessible transportation, more people using wheelchairs are using them as cars. This creates safety issues, especially when used on busy roads, at railroad crossings and other surfaces that may be designed safely for vehicles, but not wheelchairs.

And it goes back to the politics of mobility.

And why should all of us care about this "other" story?

Because, as my friend Greg writes, disability doesn't discriminate.

Kindle review: update on NowNow

When I reviewed the Kindle for the first time, I intended to update on the experimental features, one of which is called NowNow - you can ask questions of the staff and they send an answer within ten minutes according to the description in some places.

I asked who hosted Saturday Night Live the most. There was a delay in receiving answers, which could have been attributed to a number of factors, which I discussed in my review. But here's a glitch that's annoying: I'm getting numerous daily answers weeks later on the same question. The same answers and they go to my email box and my Kindle .

Steve Martin. Steve Martin. Steve Martin. Ok already. Maybe that's why they call it NowNow. Repeat. Repeat.

To read my initial review of the Kindle, please click on the label below.

Blogging pundits

..is when so-called experts about disability (are there any? I've never met one) analyze the blogs of those with disabilities- right online in their blogs. It usually happens after I've participated in a group blogging event and someone feels the need to sum up their experience about reading our diverse and varied posts from an expert point of view.

It feels objectifying.

Can't stop folks from doing it. Just sayin'.

It's very different than when people link to a post and talk about it. It's when they (appear to) take an expert POV about ALL the participants, lumping everyone together. In my not so humble opinion, not only is their analysis wrong, but it's usually incomplete- and misses the point of much of what our blogs are about.

Why? Well take one post off of anyone's blog out of hundreds and how much do you know about that blogger? And then to compound that error by making conclusions about diverse groups of bloggers - well, I guess either people will agree or not with what I'm saying.

But there is also the fact that blogging is not a static activity. I blog, I read comments, I blog again- I read other peoples' blogs. Think of it like a water cooler. Opinions change because we are in the process of being (I hope!) It's a dynamic process. I just hate to see it reduced down to generalizations from the reading of one, two, three posts of a few bloggers.

Of course, the reality in this world is there are more pundits than the people they talk about. So maybe in a way, it's flattery.

Ack, I could do without it.

But as Sartre said: Everything has been figured out, except how to live.

Power dodge ball

My nephews and I went to the park yesterday and someone had left a big plastic ball there so we decided to go on the basketball court and have a game of dodge ball.

"Don't throw the ball too hard at Aunt Ruthie," my older nephew told my younger one.

Right, I thought, already scheming up ways to beat them. Hehe.

So we formed into teams and my younger nephew tossed the ball at my older nephew, hitting him squarely in the hip. When he got the ball back, he went to toss it at me, but to his surprise, I wasn't playing dodgeball, I was playing power dodgeball - and making a power play.

In other words, I was heading full blast toward him over the line.

He began to laugh so hard that he dropped the ball. I cheered.

"I won," I said.

"Not fair," my younger nephew said. "You have an advantage because you have a power chair."

Power dodge ball. An empowering sport.

Novel no-no's

I'm reading How Not to Write a Novel: 200 Classic Mistakes and How to Avoid Them--A Misstep-by-Misstep Guide (Paperback)
by Howard Mittelmark (Author), Sandra Newman (Author)

Yes, dear blog readers, I'm actually studying the craft which I hope will spare future editors *some* of the mistakes that, although obvious to readers, are not as obvious apparently to writers. This book has made me laugh out loud at times and blush at others. In fact, since it's written by those who have spent many years rejecting books for mistakes that could have been fixed, my theory is that it's worth a read. Or two. I warn you, however, that it is written with a humorous attitude that takes no hostages so if you're of the sensitive bent, you might not like it. However, if you're that sensitive, you probably don't want to deal with rejection slips either.

Some are obvious mistakes and others may not be. Mistakes such as: plots that forget cell phones exist. If the character doesn't have one and the plot is set in the present, you better explain why. Writing styles that are redundant, sound like an inventory, or work only to flaunt the writer's vocabulary at the sake of taking away from the book are discussed. Making villains ALL bad, which results in cardboard characterization. How not to write dialog. And on and on.

I've also found some great software programs that help organize writing. PowerWrite and Power Structure for PC and I'm checking out Scrivener for Mac which is a powerful, affordable program that appeals to me since it has a virtual corkboard and timeline as well as the ability to look at several screens at once to check research or edit related passages for those domino plot changes - when you change one thing and it affects five others. I used to use index cards but these software programs provide accessible and virtual forms of organization that are very helpful.

So why do I want to do this? I don't know!!!! (oops too many exclamation points)

I've already written a few novels, one of which Meredith really likes, although I feel I've moved on from the Voice Of That Character (too many caps).

My next character could be an elf, a dragon - or another human. Anybody. Just not cats, they warn, unless it's your main character. And if you do have to write about a cat, don't give it a two word name. Like Mister Fluffy. No, not good.

Which blows the idea I had of an undercover feline. Investigator Underfoot? No, huh?

Across the Universe

I saw this movie last night, which is complete with Beatles music and a strong antiwar message. No review from me on this one. I'm still digesting it emotionally.

This song montage from Let It Be also shows the violence from the riots in the streets of Detroit.

This clip is for mothers who have lost sons and daughters to violence abroad - and on our streets. And for all their other loved ones.

Happy Mother's Day

Meet Jeanette. Jeanette is the proud mother of Raymond, a young man with a disability living independently thanks to daily supports—help with meals, dressing, medications, mobility, etc.—from Direct Support Professionals. View this clip to hear one mother's story about how Direct Support Professionals are improving the quality of life for millions of Americans with disabilities and their families.

Happy Mother's Day to mothers everywhere and all those who dedicate their lives to the important work of supporting those of us with disabilities as direct support professionals.

Was Shakespeare Catholic?

A new book by Joseph Pearce posits that he was, and that since Shakespeare avoided the fate of many of his friends who were Catholic and were persecuted, he hid his faith. Noting how elusive a figure Shakespeare is in history, the book description reads:

The Quest for Shakespeare claims that books about the Bard have got him totally wrong. They misread the man and misread the work. The true Shakespeare has eluded the grasp of the critics. Dealing with the facts of Shakespeare’s life and times, Pearce's quest leads to the inescapable conclusion that Shakespeare was a believing Catholic living in very anti-Catholic times.

Many of his friends and family were persecuted, and even executed, for their Catholic faith. And yet he seems to have avoided any notable persecution himself. How did he do this? How did he respond to the persecution of his friends and family? What did he say about the dreadful and intolerant times in which he found himself? The Quest for Shakespeare answers these questions in ways that will enlighten and astonish those who love Shakespeare’s work, and that will shock and outrage many of his critics

The Quest for Shakespeare

The Bard of Avon and the Church of Rome

is available at Ignatius Press at the above link.

[Update: Just saw a review of Pearce's book Literary Giants, Literary Catholics over at the Curt Jester so am adding that!]

A real time capsule...

..or a cyber one from Apple. Pogue reviews Apple's backup system for Macs. Positively.

Catholic Writers conference online...

The Catholic Writers Conference Online is almost over, sadly. I've enjoyed it very much, particularly the fact that I can attend without traveling and choose which presentations will help me the most. I'd like to thank all the volunteers who are giving so generously of their time.

We were talking about typewriters before one of the chats (as in the chat before the chat) and reminiscing about IBM selectrics. And when I spoke to a friend about it, she told me of this adorable children's book that was quite successful despite the fact that it is about typewriters which a lot of children today don't know much about, if at all. (It contains other amusing animal tales and is available at amazon.com). Apparently the farmer is quite upset at the noise the cows are making from typing all day! I think the cover is adorable and what a great book idea.

Anyhow, thanks to everyone for sharing their hard earned knowledge with me and for your kind and warm welcome.


[visual image: The cover of a book that reads on top Click clack Moo Cows That Type has three cows in front of a typewriter.]

Posts that make me go hmmm...

I was reading this post by another quad over at From the End of a Mouthstick which talks about some of the issues I've dealt with myself, and talks about how people have different perspectives about what would make them happy. The "if I only had" syndrome is what I sometimes call it.

The writer talks about how in rehab quads were saying if they had use of their hands they would be happy and paras were saying if they had use of their legs they could be independent and the medical staff were saying if they had a new car they would be happy. Of course, Einstein was the one to pipe up with "It's all relative" and the wise guy in the room will be sure to ask "To what?"

Personally, I've found that , as we say in the spinal cord community, our level of disability has little to do with happiness. I know many quads who are happier than paras and many paras who are happier than able bodied people and many quads who are happier than able bodied people - well, you get the idea.

The same is true about money or material things. As I watch our economy get tighter, I know there's more to this topic than just philosophizing about the relativity of situations. There are people ( we all know them) who talk about getting this or that and as soon as they have the latest and greatest model are looking to get something else. This makes them pretty unhappy, although they could already win the prize for having the most toys when they die.

I just don't think that circumstances necessarily define happiness. An inner sense of values and an ability to be resilient really do play a part. Here's a video I found on a link to on a friend's blog today that kind of puts things in perspective.

Assistive Technology Blog Carnival

Have you heard of the new AT Blog Carnival ?

Lon left me a comment telling me that this carnival is in its third month and asked me to spread the word. You can participate by submitting a post - and by spreading the word to others to support this very important carnival. Here's the lowdown about this month's topic, synthesized speech:


Please send in a post you have written or write a post on your use of synthesized speech. You can write a review on a site, a tool or a software, application and use by children, issues with it and print disability, rating different voices, etc. Be creative and let us know your thoughts on it.
The deadline to submit a post for the May edition will be May 23. The new edition will be up May 26.
Submit to: lonthornburg@nolimits2learning.com

Or you can submit over at blogcarnival (just choose AT carnival).

Here's a link to edition 2 of the carnival: My favorite post on assistive technology. If you have a blog, please consider linking to this carnival to help get the word out there! Thanks.

There's a breadth of issues covered in this carnival and a wealth of information - it should give you a good idea of what an impressive group is participating in it. What a great resource! For teachers and parents: check out the blog Teaching Learners with Multiple Special Needs.

[And hey electrodude, here's one on accessible gaming.]

[visual description: The logo from the AT Blog carnival. A black ferris wheel is shown on a gray background. On the top it reads:Assistive Technology Blog Carnival. Underneath it says: Celebrating Human Potential & Sharing How We Do It.]

37 feet of boxes: one human life

The story of Genie, the "wild child" who was so badly abused and tortured that her case gained international recognition, is being researched by a 23 year old student, who will fly to UCLA to view the 37 feet of boxes containing information about her soon.

Genie is now speechless, living in an institution, having been abandoned by people who have studied her, researched her and quasi-cared for her while funding was pouring in. Sadly, when that funding ran dry, amidst rifts among the players, Genie was sent back to foster homes and institutional care.

Does it matter?

I was reading a book on my Kindle last night that I wanted to read years ago when it came out, but couldn't get in an accessible form.

Does the name of the book matter?

Perhaps only to me.

Does the fact that I can now read what I want matter?

Again, perhaps only to me.

In the quiet of the room, with my cat sleeping on my lap, I thought these things.

I want to believe that people care whether people with disabilities get at the assistive technology that is so necessary to them. Maybe that's because I have a disability that requires quite a bit of it, so I tell myself that to calm myself down.

But I don't see efforts to make that happen, except on a one to one basis. I don't see changes in legislation, changes in social policy or even a discussion of the issue in the elections.

Did you know that in 2005, the median annual household income of working-age Americans with disabilities was $35,000, while for working-age Americans without disabilities it was $61,500?

And those are the people who are working. It says 62% of people with disabilities aren't. Leveling the playing field is one factor: a college degree, according to the study. When a person with a disability acquires a college degree, it equalizes many of the statistics, the study claims.

There are a lot of assumptions in that study, however. It assumes that people with disabilities can get the services they need and, yes, the assistive technology they need to get the education.

So we're back to that assistive technology issue again. It opens the door to fully participating in life - to working, getting an education, being part of a community. And it costs money, so much money that paying as an individual for it in this age of insurance denials makes much of it out of reach (no pun intended for us quads).

I wanted a page turner for the last decade, to have the freedom of working without being in pain. I priced them and the only one that would work on the materials I need to read cost $4000. Now the price is up to $5000.

So I use a headpointer and it's slower, which cuts into my billable time. Since I have been busy buying wheelchairs, eating utensils, assistive stuff so I can write on a computer (the only way I can write), equipment so I can turn lights on/off, etc., the page turner has never happened. Things break and have to be replaced, which often puts other items down the list.

When the Kindle came out I thought - hmmm. $399 compared to $5000. Here's the irony that people with disabilities know: if an item is not made as a disability item, it's cheaper. Part of it is that it's mass produced, but there are other reasons.

The Kindle is not a total solution for me because I have to have my work scanned to use it for that. But in this increasingly digital age, I'm looking forward to a strategy that uses more mass marketed items as assistive technology, paying less and spending more nights reading a book than staying up to work extra hours to afford items made for disabled folks.

I know that matters to me. And if you have a disability and are reading this, perhaps my experiences will help you decide how to spend the dollars you have (or your family has) wisely. Because if buying the assistive technology screws up your quality of life, it may not be worth it.

Here they come! 37th edition of the Disability Blog Carnival...

..is up over at CripChick's blog. And what a collection of posts it is!

CripChick writes:

This disability blog carnival, the 37th one of its kind, focuses on the celebration of disability culture, struggle, people, history and identity. Put your party hats on— we’re ready to get started!

“I think it was