Saturday, June 30, 2007

Gallaudet put on probation

The school, which was the scene of protests earlier this year, has been placed on probation by the accreditation committee. University officials cite issues such as lower enrollment as a result of the protests and an attempt to raise academic standards to a more rigorous level.

Scooter Dry Run

{visual description: A couple on ATV's is pictured going up a trail in a mountainous area.]

I've been writing about my equipment change to power equipment due to shoulder issues. (If you want to see other posts, just click on equipment changes below).

So today was my first journey outside with my scooter. Transferring onto it was a bit difficult, but luckily I have a swivel seat and flip up armrests. (Eat your heart out.)

I started down the ramp, which is in an L shape and I was a bit concerned about the turning radius on the platform, but the scooter I bought has a 27 inch turning radius so with a little backing up and a few tries on the way down, I was able to navigate it. On the way back up I made it in one try so I suspect practice is in order. Luckily the builder left extra room on the platform which measures about 39 x 43 inches with a ramp opening of 34 inches.

Let me just say here that I had a beautiful weather day! My friend Mary Kay came along as my pit crew just to pull me out of any ditches or tight spots. I was pleasantly surprised to find that the scooter was great even on uneven sidewalks. It wasn't tippy and it took the bumps really well. Although at 4mph it's not exactly faassst, it's not slow either.

It's definitely a "kid magnet". Toddlers and small kids got this glazed look in their eyes and started toward me - red scooter oh boy! I felt like the Pied Piper for a few minutes as we went through a local park. There was screaming behind me as mothers pulled away the little tykes. Ahh, nature.

I was thrilled to see that I could go up and down hills easily , go over reasonably sized bumps, on grass and even on a dirt-stone path for a bit until there was pavement again. I didn't even find the ride rough compared to a wheelchair. I was glad I had the adaptation for the tiller however which made it possible for me to run the scooter easily with the hand/arm function I have that's stronger. I want to thank my engineer friend who rigged that up for me the other night who said he didn't want any credit. You know who you are. :)

I do wish I owned a camera of some kind because it would have been nice to put up some pictures and I did have Mary Kay along who could have worked a camera. So I hope you don't mind that I picked the photo of the ATV riders above. I have to tell you, after not being mobile, going through park trails on a beautiful day felt as if I was on one of those.

I want to thank Shari at Easy Mobility for helping me choose a scooter that really met my needs and gave me an unbelievably good price/service, everyone on my health team, Mary Kay for helping put it together and being my pit crew, Meredith for helping put it together (I could hear you saying "I can't watch this!") , my adaptive engineer anonymous person and, last but not least, my friend Michael who built my ramp a few years ago.

Mary Kay was busily trying to figure out a way to get the scooter into my car or someone else's car, but that's for another day.

For today, this quad is mobile. And very very grateful.

Resources for Inclusion

[visual description: A grinning man is seen standing under a road sign that reads: Handicapped Person Use Caution]

The homepage of their website reads:

"We have many biases and we've worked very hard to get them."

Norman and Emma, who produced the video in the post below, have worked toward inclusion for over 20 years. Their site (click above) is a treasure trove of information on inclusion, linking to articles, printed materials and DVD's for use by educators and others. There is also an advocacy section which, in part, discusses the issue of assisted suicide and euthanasia as it applies to pwd, including the Latimore case.

Check it out.

A Credo for Support

This spoken video is worth a listen. It deals with the inclusion of people with disabilities. [For my visually impaired readers and friends, please note that the only video shown are the words that are spoken.]

Pistorius to race Olympic champ on July 15

[visual description: Oscar Pistorius, a double amputee, is shown running in a recent race. He is wearing a green body track suit.]

Officials will use the race results to see if Pistorius, who is a double amp who uses prosthestic legs to run, has an advantage. Pistorius was quoted as saying that 90 per cent of his races are against able bodied runners in local events. However there is still concern that because of his "blades" as he calls them he will have an advantage.

"Pistorius said his success against similarly equipped opponents was an indication that he did not gain undue assistance.

“If my blades are helping me unfairly, then why aren’t they giving the rest of the 70 percent of disabled athletes who use the same equipment the same advantage,” he said."


A recent court ruling went against Tatyana McFadden, a Paralympian wheelchair racer who wanted her track results at high school meets to count toward a team total.

Read it and weep - or laugh

This is really no more than a few observations about my blog - and blogging.

To date I've had over 33,000 visitors to this site.

This blog will be a year old next month.

I've put up 1345 posts so far.

I"ve had to moderate fewer than a dozen comments.

I've met (and continue to meet) hundreds of great people I never would have met otherwise.

No one seems to like my posts about my cat but I put them up anyhow and everyone tolerates them. Politely.

I receive email on a daily basis from allies and people with disabilities who enrich my life.

The generosity of the human spirit is revealed in many of the comments to my posts - as folks reach out in community to each other.

I cry when I get emails from kids who are bullied because they are disabled.

I started writing this blog because I wanted to make the world easier for my nephew who is also disabled by promoting inclusion.

I continue writing this blog because I met many other people also working toward inclusion.

My nephew probably cares more about going to the movies with me rather than about me writing this blog.

I enjoy reading other blogs more than writing my blog.

I don't think Sr. Mary Martha is really a sister. But I'll bet she has a ruler.

I've never written this blog on the road. But I will someday if someone will carry my laptop. If I do I will no longer have a laptop but a doorstop.

My secret ambition in life was to be a sportswriter after I received my grandfather's typewriter from World War I in a handy carrying case.

I wanted to write novels so badly as a kid I taped conversations and listened to the way people talked to improve how I wrote dialogue. I lost several tape recorders while going through this phase.

As a result of all my experiences, I'm writing a book about inclusion and it's almost half done. I haven't shown it to a soul. I suppose I'll have to get over that at some point.

My book will be dedicated to my nephew and all of our children as they live and work toward inclusion in their daily lives.

Friday, June 29, 2007

"The Right to Life and Human Dignity" by Leon Kass

..over at the New Atlantis (click above to read the entire article).

He writes:

"Nevertheless, Hobbes seems to me perfectly right to insist on the foundational importance of an individuated human life, and in worrying about the dangers to decency and dignity in making light of the right to life. Those who would, even today, be inclined to disagree, should ponder the human meaning of those seemingly loftier moral outlooks that deny the right to life—outlooks that push millions into gas chambers in order to improve the race, that brutalize and liquidate dissidents in preparation of the coming classless society, that dispatch the elderly and the handicapped newborn, or abort the genetically infirm, in the name of “quality of life,” that call upon doctors to deliver, with the state’s blessing, “death with dignity,” and that mutilate and blow up innocent civilians, all for the glory of God. Hobbes would call this unnatural and crazy, and a denial of natural right. So should we. We must also call it an assault on human dignity."

Well worth reading as it applies to issues of "right to die" , "death with dignity" and assisted suicide laws and futile care laws .

Disability theme in comic strip "For Better Or Worse"

This comic strip has been dealing with a story line about disabilities in a school setting. April, a student who sees students with disabilities being teased in the cafeteria, speaks back to one of the bullies and her friend who has as peech impediment then gives a speech (this appeared on Monday/Tuesday's strip which you can also access from the link above). After she did this, the students offered support.

I showed this to a few high school students with disabilities and they all agreed that it's good to see bullying of kids with disabilities brought into the open for discussion. One of them really liked the ending , but another one felt it wasn't realistic because of his experiences when he tried to speak up.

However, he thought it was "realstic that April spoke up on behalf of her friend" and said he'd experienced that many times. He also said he liked the part about making a difference because it can give meaning to what happens and how he responds. He thinks that "speaking up is important even if you don't always see an impact" like it happened in the strip. He thinks sometimes " kids in high school are too busy acting cool to admit they did anything wrong in a group, but might come to a student privately and apologize".

I thought I'd share this with everyone and I want to thank the students for their feedback!

h/t Monastic Musings

Caption Fun: iPhones :ET Call home

[visual description: A man under a large umbrella sits sleeping outside in the rain on line waiting to buy an iPhone. In the background high over his head is a building with the Apple logo shining.]
AP photo

Aliens use the tricks of corporate America to exercise mind control over humans.

Thursday, June 28, 2007

Disability Blog Carnival #17: Laughter, the Best Medicine

You have got to go over and read this one at Planet of the Blind! Consider it "summer reading" - the range of posts will brighten up your day and/or give you food for thought. Check out this video from Amanda at ballastexistenz

The Naysayers

An essay over at A Different Light. Click above to read it.

Hearing Our Voices: A documentary on schizophrenia and homelessness

The website (click above) for this documentary is worth visiting. It's beautifully done, with photos and stories introducing the participants and explaining what home is to them. I tried to recap what they said but I simply can't - you need to see their words over there - and hear them.

A poster on the site is simply entitled Searching for Sanctuary. It is a sanctuary most people take for granted, yet our society still needs to overcome the many barriers it has toward providing opportunities for housing for schizophrenics and many others with disabilities.

Video clips are available.

Wednesday, June 27, 2007


Over at Planet of the Blind, Connie is posting about this exciting project. She writes:

"Steve and I want to do what we can to help spread the word about this "television channel of, by, and for people with disabilities...and everyone else" currently under development. We have no doubt that once YOU spend just a few minutes researching [with]tv links you will be eager to do the same. This is a project just exploding with potential and we, as in all of us, have an opportunity to play a role in its development and success. "

Check this out.

Indoor scooter practice

[visual description: A photo of bumper cars in an amusement park.]

I've promised that I will take my indoor scooter practice very slowly until we figure out what kind of adaptations I might need on the controls and I learn how to work them safely.


Of course no one's here except me and the cat. So today I get on the scooter and head toward the hallway and in my head the words "Raceway Park!" are sounding. It's from a radio commercial of a local racetrack near where I grew up. And I know I'm in trouble. There's no way I'm going to be able to take this slowly, much less very slowly.

The cat decides to hide in the bathroom as I practice going forward and backward. I finally figure out the turning radius and as it goes back the scooter makes a beep beep sound. It's so cute. And so red. I'm feeling good. I'm ready for the big time.

I want to race with this thing. This scooter is fun to drive. It's like a go cart. And then I realize - no, it's more like a bumper car.

When I was a kid, one of my favorite rides was the bumper cars. I used to love those because size didn't matter. I could get behind the wheel and bump even bigger people around.

Sometimes it's so cool to be disabled. I now have permission to use a bumper car anywhere!

And here's another new scooter user:

Comatose man wakes up

This story comes from Phoenix where a 36 year old man, whose relatives and wife were in a legal battle over whether to continue life sustaining measures, woke up after an accident on May 30. He is communicating to those around him.

The scooter arrived!

[visual description: A photo of an open road ahead from the point of view of a scooter rider. The picture shows the controls of the scooter.]

It's very exciting. My scooter arrived today. It still has to be adapted a bit and I have to practice with it but I can feel the flow of air upon my face already.

And I decided, since I am now a scooter rider, to check out some scooter clubs. I figured - why not? Make some new friends. All the scooter ads online just look so cool - everyone is chummy, hanging out. It seems people get a scooter and it opens up a whole new world. Who knew?

So I call the first scooter club. Now I had to be careful because some of the names of these clubs put me off a tad. Like The Vampires. I wasn't interested, particularly due to the night rides. Or Scoot Free Or Die. Then there's the Screaming Dead Scooter Club. I just didn't like where that was all leading. I did find the Restless Scooter Club, but that was in Oslo. A long commute.
[visual description: In the logo to the left of the Restless Scooter Club, there is a checkered black and white racing flag to the left and an angry bee to the right. The text below spells out the name of the club.]

But I found this friendly sounding club so I called. The guy who answered the phone said "Sure we can always use new riders. We meet every Sunday morning at Krispy Kreme doughnuts around 11."

This was sounding better all the time. "Excellent," I said.

"What do you ride?" he asked. "A Vespa?"

"No," I replied. "I think it's called a Pioneer."

"A Pioneer? Who makes it?"

"Merits," I replied.

Silence. "This isn't a club for mobility scooters, babe," he said. "We ride real scooters. Italian scooters."

"My scooter is red," I said. "Any of you ride red scooters?"

"Well, sure, but -"

"Let me ask you this. Does your scooter go beep beep when you back up? Huh?"

"Uh, no."

"Mine does. Do you have a basket?"

"Uh, no."

"A top speed of 4 mph? Solid tires? Swivel seat? Adjustable width armrests?"

"Armrests?" he asked, groaning.

" Yes, armrests - flipup ones. So there. A safety flag? " I was spewing out all the features of my new scooter, gleaned from weeks of shopping for one. "How about this - antitip bars?"

You guessed it. He just couldn't appreciate the many features of my new scooter.

He did offer me a free jacket and some doughnuts if I show up. But I don't know.

I think those of us riding mobility scooters should start our own clubs. Clubs where swivel seats and adjustable armrests are appreciated.

Tuesday, June 26, 2007

What's your body worth?

[visual description: "Tsunami" Kobayashi is shown digging into a hot dog during a competitition.]

It was a headline I just couldn't resist blogging about : "World Hot Dog Eating Champion Crippled By Jaw Injury". It seems that this hot dog eating champion has developed arthritis in the jaw from competitive food eating and has to retire from the sport.

This comes on a day when Congress held hearings on the NFL's policy toward disabilities players develop. One of the players who planned to testify suffered concussions resulting in what he and doctors say is permanent disability with longstanding symptoms, yet he, like others, wonders at why so very few NFL ex-players wind up being classified as disabled.

So what does all of this have to do with the subject of disability? I think it shows how complicated an issue even defining disability is. For a hot dog eating champ, arthritis of the jaw is a career ending injury. Yet how interesting that the word 'crippled' appears when this young man's injury really isn't , in the scheme of life, that serious. Except to world champion hot dog eater.

And what about the NFL players? I'll bet their claims of disability are often true based on the beating their bodies take. Yet some of my readers may be sitting there asking themselves "Well aren't these disabilities the result of playing a sport and pushing the human body beyond its limits? Isn't that a risk these people assumed?"

If the hot dog eating champ was wise enough, he could have purchased insurance on his jaw perhaps, but only years ago before he began to develop an injury. Lloyds of London has insured others along similar lines.

Because let's face it - certain body parts and certain bodies seem to be worth much more for some than others.

[click above to read about the champion hot dog eater.]

Rehabilitation Counselor website

Greg Traynor, another quad who is a rehabilitation counselor in Pittsburgh, was kind enough to send me a link to his site. It contains wonderful resources in all kinds of areas - from sports to assistive driving devices.

He's compiled a list of excellent links - click above and pay his site a visit.

Movie review: Champions of Faith: Baseball edition

When I received a copy of this DVD recently, all ll I knew about the film was that major league baseball players and managers who were Catholics talked about their faith . I wasn't quite sure what to expect.

Watching this film was a spiritually powerful experience. It has appeal for Catholics of all ages, as well as those seeking to become closer to God in their faith. I highly recommend it.

The film opens up with an overview of how the sport of baseball can teach youngsters many things about life. This was well done and concrete, understandable not just to adults but to youngsters. And then, like a rollercoaster, the film changed gears and began to show profiles of players and managers in MLB. I found the film to be interesting and it kept my attention throughout.

Each segment showed how these men dealt with personal and professional challenges in their lives as practicing Catholics. It was an honest portrayal of how professional sports figures facing demanding schedules dealt with the temptation not to practice their faith by attending Mass and making time to pray. Some strayed for periods of time until facing a problem when they turned again to the Church for solace and support.

This was not the usual glorification of athletes that our society indulges in. Rather these men were shown as human beings who appreciate what they have in life, work hard to remain professional athletes and hold themselves accountable via their faith for the image they convey.

One athlete, Mike Sweeney, spoke of how his own father gave up a baseball career to be a better father to him and his siblings, then spoke of his own struggles with succeeding in baseball. He turned his career over to God, picturing himself on the back of a tandem bike with God in the front seat and made a deal: I'll pedal and do the footwork, Lord, and turn the rest over to You. Once he was freed spiritually, his talent surfaced and his career took off.

In other segments, players talked about how the examples of players and managers living out their faith had a positive effect on their team and encouraged somem of them to go back to church. Those who thought they were too busy and were caught up in the limelight of professional sports found a renewed interest in their faith, led by the example of those around them.

The positive messages of liviing in faith through each and every day, no matter what our circumstances, came through in this film. It would be a wonderful tool for youth groups, but I found it reaffirming as a Catholic adult to hear about many of the same spiritual themes I've dealt with in my own life.

One of the most important messages in this film for all of us dealt with humility. It stressed that a winner knows a path to success is paved with failure and that being human is necessary for us to grow. More importantly, it taught that God is always there to turn to. This very strong message is a theme throughout the film and is strikingly powerful juxtaposed with the images of the crowds roaring for those very human superstars we usually see.

The DVD is nicely packaged and is accompanied by a booklet containing a brief description of each segment of the film. Quotes, scripture passages, and other items for individual or group discussion are included. Click above to visit the website.

NY city lags behind rest of state in mainstreaming students with disabilities...

...and lags even more significantly behind rest of country.

Monday, June 25, 2007

Lumping together elder care and people with disabilities: a poor fit

At my parish , there is a caregivers group. It focuses mostly on caregiving of parents, although all are welcome. I spoke to the group on issues they face with elderly caregiving and shared some of my experiences as a person who both has a personal assistant and an aging parent.

One thing became massively clear to me: the issues concerning elder care very significantly from those facing people with disabilities who need the services of a PA. I really felt, which I relayed later on to the woman running the group, that there were others better qualified to talk about elder care. I gave her a few names of folks who work in the field.

Our social programs have tended to lump together the services for both elders and disabled folks. It is more cost effective to do so. But it's incongruent. Services geared toward the elderly fulfill different needs than those created for people with disabilities. Our needs are different. Yet we still put seniors and the disabled together in federal housing, meal programs, transportation services and the like.

This has stalled progress in many areas for people with disabilities since, aside from the personal assistant care programs, we lack social programs designed for their needs. At present, a social worker writes down that you're receiving services from such and such a program for seniors. Whether those services meet your needs or not, it's on paper and that goes to decrease the hours you may receive from a PA. Worse yet, if you "complain" that the services don't meet your needs, the pen comes out and you're deemed "noncompliant." The prevailing thought seems to be that you're turning down help and assistance if you point out that the elder service organizations don't meet your needs.

The head of one local organization run for the aged really got perturbed at me when I explained that their services didn't match my needs. The woman began to argue with me, telling me that they "help other young people with disabilities too". I told her that every time I asked for help, she told me it was something they didn't do . Yet even though I received no services from them, they would call and insist I be home to accept a "senior package" which contained items for seniors or a visit or some such thing. They never came when scheduled but would call and reschedule more times that I had to be home for these things, telling me "they" were busy. Whenever this happened I would look down at my stack of work and sigh. I asked her if she could just take me off the list for the packages, etc. and she adamantly refused, saying it would cause them too much work to "treat me differently". She just couldn't see things from my point of view- and ended the conversation by saying I would be struck off the list if I couldn't go along with the packages. That was fine with me! Clearly I had become the noncompliant patient to her.

There is a vast difference between a medical model of care and a consumer model, which disability advocates have fought for and incorporated in personal assistant/independent living programs. A medical model of care sees the recipient as a passive participant. Think of a nursing home situation where others run the schedule and tell the patient what his/her needs are. Compliance is the goal along with efficiency. This model is behind most elder care services to date. (I bet there are lots of seniors who don't like it either.) They tailor their services and you receive them. You have no input into them.

In a consumer model of care which is used in the Personal Assistant Program I am in, the (disabled) consumer is empowered to direct his/her own care. There is a structure in which an evaluation is done and a task list is drawn up, but within those guidelines a consumer acts as the employer of the personal assistant and directs the care.

You can see the vast difference in these approaches. Supplementing hours to a personal assistant program with services from a medical model just doesn't fit. There are legitimately different needs for seniors and disabled people and services designed for the elderly should not be forced upon people with disabiliities when they are inappropriate.

Sunday, June 24, 2007

The elder care crisis, nursing home abuse and lack of in home care...

..are topics Ken Connor, an attorney who handles nursing home abuse cases, discusses in his article at LifeNews. (Click above)

He writes:

"Because of deliberate short-staffing, many of my clients were left to languish in urine for so long that it dried in brown rings in their beds and in feces for so long that it dried hard to their skin. They often went for days without baths. Despite their repeated cries for help, they were frequently left unattended and their call lights went unanswered.... I've had elderly clients who endured beatings and sexual assaults in their rooms. Some were warehoused in roach infested facilities that had maggots in the mattresses and a urine odor so strong you could smell it from the parking lot....Yet although these kinds of incidents happen regularly in nursing homes across America, few people know about it, and fewer still seem to care. Many simply dismiss the growing problem because they buy into the lie that such suffering is the inevitable consequence of old age and ill health.
...our culture has adopted a "disposable-man" ethic that rates people on a sliding "quality of life" scale to determine whether they are worthy of life. Those who rate poorly on this scale, including the unborn, the handicapped, and the aged, frequently find themselves at significant risk of attacks on their dignity."

Via LifeNews

In addition to educating about the current level of abuse and neglect in some nursing homes, he highlights both the denial of the problems and the fact that as the graying of America continues, we will face a growing crisis since we aren't pursuing alternatives such as inhome care.
True charity consists in putting up with all one's neighbor's faults, never being surprised by his weakness, and being inspired by the least of his virtues.
– St. Therese of Lisieux

Sit down comedy

[visual description: A photo of a cornish hen on a plate with garnish.}

At the annual Ski for Light* talent show, the act I do is called "sit down comedy".

During my act I don't tell jokes that just include disability but I do include material about the humorous side of living with a disability. I've told jokes about my attempts to cook as a quadriplegic, including all the TV ad "cooking made easy" appliances I've fallen for. Then there are my jokes about my travels during wheelchair tennis. Their favorite is a story I tell about me, the quadriplegic who struggles to cut up any food, being served a cornish hen at dinner.

It goes something like this:

"I'm sitting there looking at the cornish hen on my plate, wondering how I'm ever going to cut this up. It's got some kind of sticky glaze on it so as I put my eating utensil on it I figure that might help hold it down. But the hen keeps slipping no matter what I do. Finally I get my curved utensil into the inner part of the hen and as I move my elbow to try to cut it, the hen flies across the table, hits the wall opposite me and sticks there. And stays there - mounted like the head of a deer.

No one says a thing. There's the hen on the wall and, except for a few casual glances, the conversation goes on. Finally one of the kids says to another "Bet you that'll fall within the next five minutes." "Nah," the other kid replies. "It's real sticky and it's got a lot of honey on it. I give it ten."

The host gets up, goes into the kitchen and brings me out another cornish hen. I couldn't believe it. Am I supposed to keep practicing? I have visions of a line of cornish hens on the wall and the worse part is I'm really getting hungry!"

Well you get the idea.

What's interesting is that the talent show is held in the bar area of a lodge so we always have able bodied folks in the audience who aren't with our group. In the first ten minutes of the show as I sit there telling jokes about disability, most of them are afraid to laugh. However as our group sits there, not only laughing, but laughing very loudly, I can see the visitors relax, turn around from the bar and start to smile.

In my opinion, humor is good for the soul.

*Ski for Light is an adaptive ski program for both visually and mobility impaired participants. Trips are held by regional branches and there is an annual international trip.

Saturday, June 23, 2007

Alive in Truth: Oral Histories from Katrina survivors

This website is dedicated to New Orleans and Katrina survivors. There's a great deal of information on here, including oral histories from people who lived through Katrina. Some of them have disabilities.

I read a few of them. One disabled man said that he was able to get up on his roof during Katrina with his pet and waited the storm out. By the time the storm was over, everything he owned was ruined. A neighbor assisted him afterwards getting to an area where he could get help and he moved to Austin Texas without anything.

People in Austin helped him get a mobility scooter and the basics : a bed, chair, table, etc. and he remains there, hoping that his son will join him some day. He doesn't want to return to New Orleans.

A male street performer spoke about how TV coverage is sometimes limited to showing the fixed up areas where businesses have reopened in the French Quarter, but that four or five blocks away it is bedlam. He speaks of cleaning out Burger King after the storm wearing a gas mask due to the stench. He said one problem that is happening is employers can't find people to hire yet people lack transportation and access to records employers want to hire them. There seems to be an endless circle of problems that keep progress from happening because the regular rules of business either aren't waived or made flexible to help get people back on track, yet people lack the help they need to meet the usual requirements.

One thing I know- getting mired down in bureaucracy at a time when growth is essential isn't the answer. I'm reading in the paper that New Orleans has a 46% higher death rate now and newscasters are saying doctors had to leave because their equipment was ruined so there isn't enough medical care. Medical records were lost, leading to poor care. On and on and on.

A lack of basic necessities like housing, employment, medical care amidst the ghoulish reminders of a landscape that still bears the scars of the storm - these are situations that face many.


Did you know:

In New Orleans, La., a city of about 484,000 people, 23.2 percent of residents are people with disabilities. There were 102,122 people with disabilities five years of age and older who lived in New Orleans.


37 year old cat is world's oldest

His owners say they are beginning to think that the cat, who is named Baby, will outlive them. Click above to see a slideshow of other photos.

Baby will be featured in the August issue of Cat Fancy.

[visual description: Baby, a 37 year old black cat, is shown standing looking off to the left.]

Whirlwind Wheelchair International

This organization works with people in third world countries to help develop a wheelchair that fits their particular needs, due to the rough terrain where they live. It recognizes the right of every person to have mobility - effective mobility. I think this photo of a young man in a specially designed wheelchair going down a very high curb shows very well why wheelchairs need to be customized to the environs.

In the photo at left, the wheelchair has a longer wheelbase which allows it to easily go down steps and curbs, unlike chairs currently used in the US. The front tires are wide and made of a softer material so they don't get "stuck" in holes and ruts. These special design features take into account the fact that there won't be curb cuts or paved areas. Because of where the foot rest is placed, even though the wheelbase is seven inches longer, the overall turning radius of this chair is lower than the average wheelchair.

If you go to their site, you can view a Quicktime video of these features. Or donate. Or read about how they are helping 45 third world countries mobilize people with disabilities.

And in the process, these wheelchair design features will ultimately benefit everyone.

Listen to some third world wheelchair users talk about their experiences in this video and how the wheelchairs allow them to continue to work.

Touch screen desktop PC- HP IQ 770

[visual description: A PC is shown. There is a monitor attached to a small rectangular base underneath it. A keyboard is in the forefront and a mouse to the right with a remote to the left.]

HP has come out with a touch screen 19 inch desktop PC that is being touted as a family center entertainment system. It has impressive specs, such as 2 GB RAM, large hahrd drive (320) but a rather surprisingly small processor. So it depends on the use you intend to put it to.

However, I'm putting it up because it may fit the bill for some folks with various disabilities or families with disabled family members due to the touch screen and large size print. I have found touch screens to be a help in certain contexts and large print never hurts. I suggest you read some reviews to see how the large print would affect tasks such as word processing, how the font can be adjusted, etc. for your needs. Speaking of adjusting, you can make height adjustments to the screen but it doesn't swivel, a feature I found lacking in recommending it for certain uses to folks.

It also comes with a large starting price although shopping around can help.

Friday, June 22, 2007

Hiring an Arm and A Leg

I've written a series of articles on the topic of hiring and working with a personal assistant over at A Different Light. I hope this is helpful for pwd, seniors, their loved ones and families and friends. Maybe even PA's.

However- the owner of a concierge company left a positive comment over there so even if you're not disabled but plan on looking into personal assistant services of any kind, I suppose some of the suggestions are helpful as well.

Anniversary of Olmstead decision

Kay over at The Gimp Parade points out that today is the anniversary of the Olmstead decision and writes about it and the "right to die" in a post you shouldn't miss (click above). She writes about Larry McAfee and his wish to die until advocates helped him set up a life outside of institutions, among other topics.

One of her links is to an article from a member of ADAPT:

"No matter what others or you think about our quality in life; we deserve what we think of life based on qualities decided by those of us who live our lives, in our bodies according to our own situations and circumstance. You may not be able to understand because you do not yet need the assistance of others and that is fine. Those of us who do need the help of others deserve to get that help where we determine and in the way that best enables us to lives of health and happiness.
...On that day when you or a family member needs what we have set up as choice for all, you will praise us and thank God that others have made this determined effort; that many battled when others told us to accept that "that's just the way it is." Hopefully soon you will side with our efforts and come to understand that what we do is for the freedom, in posterity, for every child born American. Perhaps even what we accomplish here will serve as precedent for every other country of the world, and perhaps they will follow in suit to take care the needs of the whole population, and people everywhere will forever be free from life in institutions. Praise God, let it be so."
-Zen Garcia

Commercial application using the mind to control electronics demonstrated

[visual description: In the foreground a male scientist stares at a monitor while a female sits wearing an electronic cap on her head.]

A possible commercial application that uses thought to control electronic devices does not require an implant like the medical model. Scientists have invented technology that allows a person's thoughts to run a toy train after adding sums or singing a song. Slight changes in a person's brain flow works to move the object.

Commercial applications generally result in a lower cost to the consumer than medical versions which is a plus although there are still issues concerning the size of the equipment used and other things to be "ironed out".

New to the Blogroll: Kara's Place to Breathe and Believe

Go on over and visit Kara - her blog states she is a "' clinical psychology doctoral student who blogs about life with Osteogenesis Imperfecta, disability issues, and occassionally-two bulldogs."

I found her after she linked to my 10 rules of driving for Catholics post. Spent some time reading there and found out she is also a Catholic with a disability . She's witty, has awesome graphics (love her blog design and she has a very cute little scooter animation today), and blogs about lots of topics. (Check out If I Had a Nickel where she talks about the all too common remark by folks that you should have an umbrella for your wheelchair. It's great.)

Nice to meet you, Kara, welcome to the blogroll!

Bringing you....Catholic Tube

Hat tip to the Curt Jester

Pope John Paul II

Reader question: Why do you talk about disability culture when you want inclusion?

"The elements of our culture include, certainly, our longstanding social oppression, but also our emerging art and humor, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview, beliefs and values, and our strategies for surviving and thriving. I use the word "remarkable" because I find that the most compelling evidence of a disability culture is the vitality and universality of these elements despite generations of crushing poverty, social isolation, lack of education, silencing, imposed immobility, and relentless instruction in hating ourselves and each other."
-Carol Gill

Great question. Thanks for sending it. Let's start by talking about disability culture.

It's certainly not easy to explain disability culture in a few sentences or in a blog post. I decided to use the above quote because it addresses various aspects but I'd like to add my own experiences of disability culture before I answer the reader's question.

As Dr. Gill notes, there is a "remarkably unified worldview" among disabled people. I discovered this when I first went on a Ski for Light (adaptive skiing program) trip with blind friends. I was the only MIP (mobility impaired person) there among the VIP's (visually impaired person/s). At first I was unsure if all of us would "speak the same language" considering I had a different disability. I found out that we certainly did, emphatically so. In my own life, I can attest to the fact that there is a disability culture with its own language, worldview, beliefs, values and strategies for surviving and thriving as Dr. Gill puts it so succinctly.

Although disability culture is a very real phenomenon, I believe its public expression has been blocked . More voices that represent disability culture are being heard now. As that continues to happen, there are more opportunities for others to view our art, read our writing, watch disabled comedians, dancers and performing artists. With inclusion, even more opportunities will exist- even in everyday conversations.

Personally I don't believe that we can achieve inclusion simply by making it a goal for disabled people to assimilate into able bodied society if there is no recognition of disability culture. This may seem paradoxical at first. But full inclusion requires more. Full inclusion is about creating a community for all of us.

Inclusion does mean working toward addressing the physical and attitudinal barriers that exist which bar access in our society. So if you take a step back and watch how it works, you might think that full inclusion is achieved when a person in a wheelchair has physical access when they didn't before. But it's just a first step.

I define spiritual inclusion as embracing the richness and diversity of experiences various members bring. I believe we need to openly recognize disability culture like any other culture because any other approach simply homogenizes members.

Able bodied people can and do learn about disability culture and this will be part of the process of inclusion. What disabled people bring with them to the table as part of their life experience is equally valuable to a world that values diversity. Inclusion can't be about simply merging into the status quo. That would rob everyone of the gift of sharing their diverse experiences. This sharing is necessary in order for our communities to be whole.

I'll leave you with a quote that describes what I'm explaining.

"We, the disabled community, as we demand a place in the sun, are a reminder to the whole human family of the need for justice, for inclusion. We stand uncomfortably, often within our faith communities, reminding them that they cannot be who they are without US. We do not ask for their pity, we ask for justice, and we say to our faith communities, “Don’t include us in your community, but together we must create a community which is for all of us. And that is very different”. We are not asking the faith communities to be nice to us and feel good about it, We are saying, “You cannot be a faith community without us”.

Portion of the keynote speech entitled ‘Exploring the spiritual dimensions of disability’ given by
Father Michael Lapsley

Part time pastors growing in different denominations

Just as Catholics realize that about 500 of our parishes are being run by laity due to a shortage of priests, other denominations are using part time pastors to keep churches open.

The article I've linked to above talks about one pastor who juggles a full time job in the US Army during the week with being a pastor at several churches. He spends his weekends traveling to various services. But, as the article points out, when the needs of parishioners arise, these part time pastors have little wiggle room to attend to that and wind up doing so by sacrificing their sleep.

The Catholic church is emphasizing the need for laity to become more involved in various ministries and more active in parish life as we face a shortage of clergy. This growing trend toward more involvement of lay people in the day to day running of a parish will result in some positive changes.

Perhaps we can frame this as an opportunity to find ways we can best serve God and each other with our individual talents and hearts, rather than seeing this as a deficit. Certainly it makes sense for parishioners with various skills to help overworked clergy in a changing world.

Thursday, June 21, 2007

Church asks mom and disabled child to leave

A woman whose husband in the National Guard was off on duty was asked to leave a church service when her disabled daughter's squealing during singing was seen as disruptive.

""It wasn't quiet," said Harvey, who chose the Household of Faith despite her Catholic upbringing, because the church had a reputation for spirited worship.

"The band was playing, people were singing and clapping and shouting 'hallelujah', and Teagan got excited." Because Teagan can't communicate verbally, Harvey said, she began squealing and letting out little screams.

"She was singing her praises the only way she knows how," Harvey said.

But as the music played on, Harvey said she was tapped on the shoulder by an usher and told that she and Teagan would have to leave.

"As a parent of a disabled child, you tend to prepare yourself for the comments and the looks," Harvey said, "but I hadn't prepared myself emotionally for this because it was church." Via Union Leader

The comments to this article are very interesting. Most people are shocked that this would happen, but I do receive emails from parents of children with disabilities who are told their child's behavior cannot be tolerated. Most of the time, the entire family stops going to church out of the fear of being treated like that again. I'm always happy to talk to them about alternatives and resources.

Some will say that any disruptive child should be removed - at least temporarily - during a service. I wasn't there but this mother indicates the congregation was singing at the time and particularly noted that it wasn't during a time when services were quiet. If that is the case, then based on much of the singing I've heard in church, I'd think she'd fit right in. Nor was the mother given a chance to quiet her child down.

Certainly this article highlights the importance of a dialogue toward inclusion when the end result is that people are being turned away from churches and services.

Any thoughts or experiences with this?

It's a fine mess you've gotten us in Ollie....

[visual description: A photo of the comics Laurel and Hardy wearing kilts and bearing arms.}

The names will be changed to protect the innocent. Just like on Dragnet.

One of my friends called me to tell me that he wound up in a bit of trouble the other day and needed some (free) advice. I reminded him that his "bit of trouble" usually involved more complicated scenarios than I care to deal with by the time I'm done working for the day and he just sighed. Deeply. So I softened and asked what was wrong.

"Well," he said, "I was out in my offroad wheelchair and decided to try this jump."

"What jump?"

"Just a little three foot jump I found near a creek near my home. "

Ahh, I'm imagining rural scenes. I can see him now in his Frontier 5 wheelchair, angling up to the creek, giving it a careful, well practiced eye before trying it - and then I remember who I'm talking to - Ollie. "What did you do?" I ask, sounding like the parent of a teen who just broke curfew.

"I took the jump."


Silence. "I hit someone."

Now we're getting to the bottom of this. But there's more. There's always more with Ollie.

"I hit someone's car. Their Cadillac." His voice lowers. "I sort of put a dent into it."

"New?' I ask, knowing the answer.

Silence. Sighing. Very deep, very long. Then his voice breaks. "A week old."

"Ollie! How could you hit a Cadillac near a creek?"

"Well the creek was near the road and I should have taken another angle but I had a good shot at it."

So we discussed his predicament. I considered asking him to call someone else but really did feel sorry for him when I considered how he'd have to explain how he managed to dent a new Cadillac with a wheelchair. However I did warn him that the price would be that this was bloggable - sort of like a public service message to any one else planning to jump creeks near highways.

Usually it's the other way around - where people are hitting our wheelchairs. Check this out where a guy loading a wheelchair into a car got injured :

- although his wheelchair was destroyed and he was injured, he kept a great attitude about all of it.

Much better than the Cadillac owner I'll have you know. Ollie!

Wednesday, June 20, 2007

Never tell a quad not to eat grapes

{visual description: A photo of red and green grapes.}

I happen to like grapes. It's a lot of work for me to eat them because of the lack of dexterity in my hands.

One of my quad friends still gets teased about one time when he tried to eat shelled nuts at someone's house. It took him so long to open one nut that his friend's mom looked at him and said "I hope that was worth it."

"It was," he replied.

And I can relate to that. I get to choose where my energy goes just like everyone else. You might decide it's worth it to go rock climbing and I'm not into that. It's not any different.

But it goes beyond that too. All too often I hear people say to me or another person with a disabiity "You can't do that." Sometimes it's "You shouldn't do that." Or my least favorite because it's so fear-based "You better not do that!"

The problem with this kind of talk is it excludes possibilities. It closes doors that may not need to be closed. And, worst of all, it negates the fact that only the person with the disability knows his/her limits and abilities.

My cat loves it when I eat grapes. He can play with the ones I drop. It's that simple to him.

After a day like today, I wish others would take a lesson from that.

Petition to create AMA Disability Advisory Committee

Online petition - Creation of an AMA Disability Advisory Committee

"Numerous recent medical cases, such as the growth attenuation treatment given to Ashley, underscore this urgency. It is imperative that the disability rights perspective of people with disabilities is formally represented in the structure of the AMA so as to minimize the likelihood that similar mistakes, breaches in the law, will happen in the future.

Please sign it and circulate it as widely as you can. And as quickly as you can. The AMA will hold its annual meeting in Chicago on Thursday, and we would like to present the petition to them on this day.
Thank you in advance, for your help.
Linda Edwards

Tuesday, June 19, 2007

My Mouth magazine came today!

I love it when my Mouth magazine issue comes in. This edition is particularly good. (For those who don't know, Mouth magazine is a disability 'zine in print.)

This issue is called Liberty 101 and features "heart-to-heart with Ed Roberts". It's full of his writings, his years of experiences as a disability advocate and his wisdom and insights about life and disability (The Tao of Ed - How to Live Longer are great pieces). There's an article about starting the independent living movement on campus.

Of course it also has the usual cartoons which make me LOL.

Subscribe. Today. Now. Immediately. You're missing out.

EmPOWERing myself

After I discovered that I'd developed problems pushing my manual chair I began searching for various solutions to get mobilized.

All I had when I found this out was a manual wheelchair, so my first move was to hit eBay and get a Jazzy power chair. So far that's worked out. For about 1/7 of the original price, I found a working chair that will just need batteries and a few adjustments on the front since it was owned by an elderly woman who apparently did not hop curbs (not that I would do such a thing!) and some seating fixups which I can do workarounds with from things I already own.

It was great to get the indoor power chair going and get out of immediate pain but then I realized after trying to lift my manual chair into my car that the level of pain ensuing and the setbacks weren't a good thing. Ut-o. As one of my friends who is an OT said to me "Well you can leave your wheelchair in the driveway and go through drive throughs!" Which is true. That works for some errands and I can take drives. But Ronald McDonald makes a poor date if you get my drift.
[visual description: In the photo at right, Ronald McDonald, in his red and yellow clown outfit, waves at the world.]

It's kind of an odd way to live never getting out of your car too. It reminds me of the legend of the Flying Dutchman, the ship that just wanders out at sea. I may not have this tale down right since my Uncle Bill who was in the Navy many years told it to me and he developed the sailor's habit of telling tall tales. As Uncle Bill told the story the Flying Dutchman just kept circling around for eternity, appearing at night against the horizon of the blackened sea.

I know, not a happy image. I was feeling a tad frustrated. I looked around at vans with lifts and ramps and accessible cars but they're not in the budget. I can't lift a transportable power wheelchair into my car (because of the shoulders thing although I'm not sure anyone can - and I couldn't find any Olympic weightlifters for hire). So I thought let me find out the newest and latest in scooters. I see people scooting around town.

I found out quickly (which didn't surprise me) that I can't use 99 per cent of scooters due to balance and dexterity issues including the ones you can easily lift into a car - but there is a new one out that can be outfitted for someone with my level of disability. With any luck this will work for me for around the neighborhood and can be transported if a friend or aide comes along in a car. This "scooter" has a power chair base with a very small (for a scooter) turning radius of 29 inches and an extremely high stability rating. It also has controls available for people with dexterity issues. So it might work out for me.

So long Ronald!

Media and Disability: An Article

I received this article via the SDS list serve. It reviews several journalists' approach to dealing with the subject of disability and thought some of my readers might enjoy it. The writer posits that old formulas including ideas like "confined to a wheelchair" and overcoming odds need to be put to rest.

Thou shalt not drive and drink...

The Vatican has issued ten rules for the road for Catholics to follow. The rules address common problems such as road rage, drunk driving and remembering to pray before you start your trip.

Monday, June 18, 2007

“This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.”
-Dr. Howard Brody

Hat tip to David over at Growing Up with a Disability for the link to a great article which this quote was in. I wish David bon voyage as he prepares to leave on his trip to Costa Rico tomorrow and send prayers and best wishes along with him. I know he will be a wonderful international ambassador.

[visual description: Photo of a river in Costa Rico surrounded by tropical trees.]

Peter Singer's views have him ejected as speaker

"Every so many years some of the world's most eminent scholars and religious and political leaders meet in the Polish city of Gniezno to discuss matters pertaining to Europe, especially the uniquely European view of spirituality and the nature and dignity of man.
The Gniezno Congress--which traces its roots back to the year 1,000 when Otto III arrived at the tomb of bishop martyr St. Adalbert in the city of Gniezno--is regularly attended by numerous presidents of European Countries, and, in 1997, was attended by the Holy Father John Paul II during his landmark visit to Poland.
Peter Singer is the notoriously radical philosopher and bioethicist, whose approach to ethics includes advocating as morally acceptable sexual intercourse with animals, the killing of "undesirable" or disabled newborn infants and eugenic euthanasia and abortion.
However, earlier this year a number of Christian groups found out that the Congress had invited Singer and began complaining to organizers. A source close to the scene indicated that parents of Downs Syndrome children were prepared to protest the Congress if Singer did in fact end up attending. In the end, however, Congress officials decided to cancel Singer's invitation due to the controversy, and the activist's name was removed from Congress literature."

via LifeSite News

"Can't Find a Way Out"

a new poem

Via A Different Light

Sunday, June 17, 2007

Mobility: The Board Game

After spending the past six weeks trying to figure out ways to stay mobile due to my shoulder problems, I've come face to face again with how tenuous a position all of us with disabilities are in when our equipment needs changing.

I finally decided that I need to put all this information into a format so others can benefit from it. And what better way to do that than in a board game?

I considered other board games while I was planning my game. There's the ever popular Monopoly and the tempting title Mobility Monopoly. Players could start off without any mobility equipment except, perhaps, a cane and then as they play acquire rollators, scooters, manual wheelchairs and power wheelchairs (not necessarily in that order). They could build accessible houses and buy other properties and put in ramps, accessible bathrooms and such.

But I ran into a few problems with that design. Because acquiring all that equipment just wouldn't help the player make money and then he/she would lose the game.

So I thought of the game of Life. You start out in a car and proceed along, picking a job and getting married and having kids. I think this game fits best although in my game ( called No Mobility, No Life) players would only be able to move when/if they had the mobility equipment that they needed. Otherwise, just like in real life, players have to stay home. That would be an area at the beginning of the game marked HOME.

You couldn't leave HOME until you successfully rolled the dice and got lucky numbers in one of three areas: darn good insurance coverage, lucking out on finding a mobility device on ebay or winning the lottery. Then you can get that mobility device you need to move forward and play life.

I think that's a more realistic start to a game about mobility. Because the main thing I've learned about mobility is that with the way our system is currently designed it often comes down to a roll of the dice before you can even get out there to have a life.

[visual description: The image above is a photo of a pair of dice.}

Saturday, June 16, 2007

Cat-a-Log : A Blog

I found this wonderful blog about cats - with lots of photos the other day. Highly recommend it for my readers who love cats.

And for an adorable kitten in a box video, I have this:

Surveys of the Spine

There seem to be an inordinate amount of research surveys studying people with spinal cord injuries out there. When I was first injured and received an email or request to do a survey, I cheerfully agreed. But after over a decade, I'm rather tired of being studied.

It's not that I don't want there to be studies done that could help people, but the questions on many of these surveys are the same, even when the researcher claims to be studying a new facet of living with a spinal cord injury. And because I'm a quad, filling the surveys out can be anything from tedious to hit and miss anyhow. Which makes me wonder if the results they're getting are valid. But more on that later.

For example, about a month ago one of my friend's friends was sending out surveys and looking for paralyzed people. So my friend dropped my name. (Don't you hate that? Oh yeah, I have a paralyzed friend. She'll do it!) Anyhow I decided to do the survey. A screen came up with various questions and I'm thinking "I saw these before!" Mostly they were questions about quality of life issues, asking if you work, play, etc. with your spinal cord injury. I always wish it was fill in the blank. "Do you participate in recreational activities with your spinal cord injury?" "Yes I bring it with me all the time!" And for the work questions "I only bring it on Take Your Spinal Cord to Work Day."

But sadly it's not fill in the blank. It never is. Just those little dots on the page where you have to pick from 1 to 10. So I'm sitting there aiming my electronic head cursor so I can click the tiny little dots. It's like taking the SAT's in an earthquake. Sometimes you're going to miss even if your life depended on it. The best I can do is if I want to answer somewhere around 5, I just aim in that general area. If I hit 6,7 or 3,4 or 5 I don't bother to change it. If I'm off a lot and hit the numbers on the way ends, then maybe I'll fix it. I call it the quad differential.

Then I thought to myself: maybe you're not the only one doing this and that's why they keep repeating the same questions in these surveys. They just can't get accurate results and it's all your fault , you head cursoring quad.

Wow. That kind of shook me up. I considered stopping the survey. But then I thought - heck no, you know there's only 20 more questions to go and you've already answered 40. You just don't walk away from tests - or surveys -with those cute little dots - in the middle. That would be downright un-American.

There were a few questions at the end I haven't seen before. I think three of them.

I bet they'll be on the next survey I do. Which,hopefully, won't be real soon.

You (tube) GOJO!

GOJO is sending comedians with disabilities onto public transport to further their efforts toward encouraging use of public transport by pwd. This clip is entitled "Is there going to be dribbling?" Enjoy!

Friday, June 15, 2007

One in seven

"We are, without a shadow of a doubt, the most diverse minority group on the planet. We are everywhere you look, and yet you do not see us. We are one in seven*.

We have two things - and only two things - in common with one another:

1. we have some degree of physical or mental functional loss or difference (we have impairments); and
2. we are excluded from full participation in society because we have impairments (we are disabled)."

We are

one in seven

click above to read the rest by Lady Bracknell..

The kid's a science prodigy.....

A video baby monitor has been picking up live NASA coverage of the inside of the Space shuttle. The baby's mom took a clip into her job to show to disbelieving coworkers.

NASA says that it's very unusual and people there are interested in how it's happening.

I think all baby monitors should come with a choice of cable channels. Educational.

Super Power Chair Poncho

[visual description: A woman is wearing a bright green poncho. She is standing with both arms held out to the sides modeling it.]

So what do you think of this one?

Oh, I'm sorry. Let me explain. You see, I know this sounds ridiculous but those powerchairs that cost thousands of dollars - well you're not supposed to get them wet. Which means - lean closer now for the punch line - I'm going to need to get a poncho for my power chair to wear.

Silly me. I thought wheelchairs were meant to take you places and it never occurred to me that being outside would be an issue. But apparently it is. I find myself looking up at the sky now thinking "Is it going to rain?" I must be saying it out loud too since someone asked me today if I wanted a copy of the Farmer's Almanac for my next birthday. Very funny.

Anyway what you're supposed to do is keep a poncho handy and when it rains you casually toss it over yourself - and the very expensive chair - oh and you're supposed to carry some kind of freezer bag 1 gallon size (if you're too cheap to buy a joystick cover which I am) and then rubber band that over the joystick controls so you can clearly see them as the raindrops fall.

I have a few problems with these arrangements. FIrst of all I've always looked lousy in ponchos. My grandmother knitted me ponchos when I went to elementary school. I never liked them. She put fringes on them and it wasn't a good look for me. And I can't imagine a worse poncho scenario than wearing one that is covering me and a very large power chair that sticks out in the back. Does this poncho make my butt look big? You betcha.

Secondly I just don't see how, being a quadriplegic, at the first sign of rain I'm supposed to manage to yank out a folded up poncho, drape it over me and the chair and get a 1 gallon freezer bag over my joystick . It sounds like a lot of hand movement to me. I really think I'm going to need to practice all of that.

Maybe I'll go out during a light drizzling rain some day and work my way up to a downpour.

Thursday, June 14, 2007

Wheelchair user barred from presenting petition on infanticide to Royal College of Ob/Gyn..

....because she needed someone to push her wheelchair and only one person is allowed, according to RCOG, into its London headquarters.

"The Royal College of Obstetricians and Gynaecologists (RCOG) London, today refused to let wheelchair-user Alison Davis present a petition on the infanticide of disabled babies. Officials told Ms. Davis, leader of the No Less Human disability rights group, that she could not come in because she would need someone to push her wheelchair, and the RCOG would only let one person into its London headquarters.

Alison Davis, who has spina bifida, said: “It would be comical if it weren't also tragic that the RCOG, which has asked for a debate on the killing of babies with disabilities such as spina bifida, won't let me, a disabled person, hand over our petition which has some 28,000 signatures. Neither I nor my career is a threat to anyone.”

Click above to read the rest.

Disability Carnival #16: Borders

An excellent carnival over at pilgrim girl - on the subject of all kinds of borders and the interplay of disability- living with, in, around disability.

She writes:

"A few months ago I was engaging in an online debate with some TAB friends who argued that the routinized abortion of fetuses with disabilities or genetic abnormalities should be encouraged. As I expressed opposition to their ideas, my well-reasoned arguments were soon abandoned.
"Are you saying that I should have been aborted?" I asked. "That society would be better off without me?"
One of them responded: "Well, not you of course. I never think of you as disabled. You are just Jana."

This response bothered me just as much as the original assertion about aborting babies with disabilities. I found myself simultaneously pleased to know that my friends didn't think of me as disabled even as I was disgusted that they refused to recognize that identity as important to me. Through this I realized just how flexible the borders of disability are--the categories of 'normal' and 'disabled' bending and flexing to both include and exclude. "

Click above to read the rest.

Two Australian professors suspended in the Laughing at the Disabled film/thesis controversy

...and from The World Today, an Australian radio show:

"PETER CAVE: The Queensland University of Technology has defended a decision to suspend two academics who raised concerns in the media about a PhD thesis called Laughing at the Disabled. The project involved a reality television style comedy starring two men with intellectual disabilities.

Doctors Gary MacLennan and John Hookham from the university's film and television school spoke out about the PhD project because they felt it was offensive and unethical, and set the men up to be ridiculed.

Well, they've now been suspended from the university for six months but QUT's Vice-Chancellor says the two academics breached the university's code of conduct.

Kathryn Roberts reports.

KATHRYN ROBERTS: In a newspaper editorial earlier this year, QUT academics Gary MacLennan and John Hookham went public with their concerns about a PhD thesis project involving members of the disability community.

The project by a film student was entitled Laughing at the Disabled: Creating Comedy that Confronts, Offends and Entertains.

The two academics aren't talking today, but on the Internet site YouTube, they've posted a video about the serious misconduct charges brought against them as a result of the newspaper editorial."

Click above to read the rest of this interview.


Contrary to some of the assertions in this video, the disability community has varying opinions on what/how/when humor juxtaposed with disability is appropriate.

This is an interesting scenario because it pits freedom of speech against freedom of speech. Is the student entitled to complete freedom in his exploration of the subject of disability? Some would say that any other conclusion would "chill" future student work.

Keeping in mind that it's a thesis done by a student, what are the ramifications of suspending two professors for going public with their concerns about a PhD thesis project? Some will argue that the university has the right and even an obligation to discipline these professors for writing a newspaper editorial. Others will see that issue in itself as an encroachment on their right to free speech.

eVokability...the notion of "walking": a multimedia performance

Exploring ideas and images surrounding the notion of “walking,” vis-à-vis the body with disabilities, multimedia performance piece, eVokability: The Walking Project presents a workshop performance in Philadelphia on June 22.

Performers wear Costumes embedded with sensors that track the shape and force of physical gesture, using these dynamics to generate live media projections that amplify their movement. Each performer’s sensor-based Costume is technically “tailored,” to her body and her movement. Each Costume functions as a media "instrument" that the performer plays: a virtual extension of the body, a narrative prop.

The eVokability workshop performances take place:

Thursday June 14, Friday June 15 & Saturday June 16 at 7:30pm at Dance Theater Workshop Studio, 219 W. 19th St., New York;

Friday June 22 and Saturday June 23 at 7:30PM at Spirit Wind Internal Arts Society (213 New Street in Philadelphia).

Tickets are $10 ($7 for students/under-/unemployed) and can be purchased by contacting Sarah Drury at or by calling 917. 254. 3468.

Wednesday, June 13, 2007

Power chair antics

I've received a few emails from readers asking me how it's going with my new used Jazzy power chair. It's going great!

Actually I've found some new, unintended benefits from using a power chair. The power chair takes care of the pesky problem of opening the front door when the mail comes. I simply push the joystick forward full speed ahead and open sesame. Even the mailman gets into it. He tosses the mail up in the air and it lands in my lap. Then he runs away. Very efficient. Cool.

It is also intriguing to hear what interesting noises you get when you ride over things. The crunchy foods like cereals are predictable but there were some real surprises when I ran over fruit. And there was a surprising echo when I crushed Gladware. Corelle dinnerware really is strong. That's all I'll say about that.

I'm thinking of calling the chair Rambo. But I haven't picked out a name yet. There's so much more to explore that it's going to be tough to name it.

But my antics are calm compared to what Andrew, who has muscular dystrophy, is planning - he owns a Frontier X5 off road power wheelchair- (definitely a dream machine for those power wheelchair users into adventure) and is going to film a documentary as he takes it around the world - check this out

Writings over at the Nth Degree

"To laugh is to survive"
-Dan Wilkins

I love Dan Wilkins' company and site - The Nth Degree. Dan works toward inclusion and has many creative T shirts, bumper stickers and posters that he sells if you're interested. (Browsing over there , I guarantee you, beats any other use of 15 minutes of your time! You 'll learn things and get a good chuckle. Who can beat that?)

Now he's added a "Writings " page on topics such as disability culture and inclusion issues. If you click above, the link will take you there. Enjoy!

"St . Anthony around the blogs"

Via Open Book

Above is a wonderful link to blog entries about St. Anthony, one of my favorite saints.

When I was growing up, my grandmother would always tell us to pray to St. Anthony. He is the saint who "seeks what is lost" so if we misplaced anything, my grandmother would pipe up "Pray to St. Anthony!"

But she also encouraged us to pray to him for all kinds of problems. If we had a problem, she'd say "St. Anthony will help you find the solution". If we were having trouble in school with a class, she'd urge us to ask his help because he'd help us find the answers. On one occasion when I was trying to decide whether to break up with a boyfriend, I stopped her in her tracks before she said "Pray to St. Anthony" but then asked her how St. Anthony could help me with that. She meekly replied "St. Anthony will help you find the right person."

All I know is that I grew up with a very special place in my heart for St. Anthony. Today as I face different issues than even last year I find myself turning to him for his very special brand of help and intercession. I've learned over the years that sometimes the answer I seek is simply spiritual peace even when the problem is not immediately solved.

"Disability claims related to obesity could rise"

Via USA Today

FYI: an article about obesity as a disability and possible types of discrimination lawsuits

Mobility 102: The economic factors in mobility

In Mobility 101 I explored accessible vehicles for wheelchair users. In this post, we'll take a look at how economic factors can limit the mobility of a wheelchair user.

Several factors are involved in this equation. First, the wheelchair user must have a wheelchair that is "right" for them - that is, it must be suitable to transport them where they need to go - in and out of the house,for example. Some wheelchair users can push a manual chair only for short distances depending on the weight of the chair. So if their insurance provider will only pay for a heavier manual chair, they may become housebound because they don't have a wheelchair that's suitable - unless they can afford to pay out of pocket for a suitable chair, such as an ultralight wheelchair or power wheelchair.

Another factor regarding wheelchairs is having the resources to get repairs done. Some people have manual or power wheelchairs that break down and have difficulty with access to repairs for economic reasons. They may not have the means to transport the wheelchair to a shop for repairs or lack funds or coverage to pay for repairs. More frequently, their wheelchair may run but in a limited way because of these factors and this in turn limits their mobility. There is also the issue of needing a new wheelchair long before a person is eligible for funding. Keeping an old wheelchair going can be tricky.

Another mobility issue affected by economics is transportation. Public transportation may be an option for some if they live near a bus route. We are still working toward accessible taxis in our country. Some communities provide services for disabled people where a van or small bus will transport them to certain places, such as a doctor's office. These options vary and result in varying levels of mobility for those depending on them based on where the person lives.

Although some wheelchair users are able to afford cars to transport their wheelchairs, many cannot. This issue is clearly explained when one looks at the cost of accessible vehicles, which range in price from $50,000 down. If certain adaptive features are necessary, that can raise the cost even higher. If a wheelchair user needs a ramp or lift to transport their wheelchair, they fall in the category of needing an accessible vehicle. Some wheelchair users, as noted in Mobility 101, can use "regular cars" to transport their wheelchairs. But this depends on their disability.

Grants and agencies that may help fund this equipment do exist. However, it can be difficult to get this funding and it isn't something a wheelchair user can count on. There is also the option of buying used equipment, but this carries some risks and even used equipment can be pricey.

Due to the high cost of this equipment, wheelchair users with the same level of disability will experience very different levels of mobility based on their financial situation, insurance or, if they are fortunate enough, assistance from family and friends. In fact, their mobility level will vary over their lifetime if their accessible vehicle ages out, for example, and they can't afford to replace it.

It is important for all of us to work toward a higher level of mobility for wheelchair users by continuing to explore available options to access to the equipment that makes that possible. One of the important factors in this equation for the wheelchair user is to remain as empowered as possible while exploring all options, whether it be used equipment, funding, or using this as an opportunity to create new options.

Economic limitations are a reality, however working to empower ourselves and assist others on that journey is key.

Tuesday, June 12, 2007

Spiritual Inclusion: The Movie

Got your attention? Good.

I can see the rating now on Rotten Tomatoes: 17 out of 100. The review "This movie tries to push for spiritual inclusion of disabled people in institutions like churches, but is anyone in Hollywood really interested in that? Ben Affleck does a great job as a parish council member who starts a disability ministry but the scenes showing the meetings are really boring." 17 seems to be the score given to movies that go out on a limb.

So for a number of years now I've been working on a book about spiritual inclusion. The truth is there always seems to be advocacy work that needs to be done so the book doesn't quite get finished. The other day a friend of mine pointed me toward a self publishing website and said "I dare you" and added "Think about how you can sell the film rights" and we both laughed.

But the idea of making a film about spiritual inclusion stuck in my mind. It's probably not going to literally happen because of several reasons. But that doesn't stop me from mulling the idea over.

And it makes a great post heading, doesn't it?

Monday, June 11, 2007

"A face to face with " Kevorkian

Via the Detroit Free Press - an interview by Mitch Albom of Jack Kevorkian. He writes:

"So when Kevorkian sat down across from me, I was ready to empathize with his compassion for the sick.
I was not ready for the man himself."

Click above to read the rest.

Homebound? Can't get to Mass?

This website allows you to watch Mass online. EWTN also provides video resources for Catholics along with its television programming. To watch Mass in Spanish, click here.

If you or a family member are homebound, you can also contact your local parish to find out if they have a ministry to bring the Eucharist to your home.

Need information about or help with assistive technology?

Check this site out: Assistive Technology Online Community
"Assistive technology is any item, piece of equipment, or product system that is used to increase, maintain, or improve functional capabilities of individuals with disabilities."
- definition from NOCK National Organization Caring for Kids is a nonprofit organization that provides assistive technology to children with disabilities and chronic illnesses through fundraising and other efforts

Of economics, the value of a human life and broken hearts

In the NY Times, the article "Pinning down the money value of a person's health"appears today in the business section talking about the economy of health care and its application to human beings.

I've been posting a lot about this topic albeit in different areas. We are facing drastic cuts to the Talking Book program for the blind and elderly which would disrupt their access to books.

So what is the value of the joy of reading? Of knowlege? How do you put a price on the effect of such a cut to people who cannot read a book? Imagine two, three years from now walking into Barnes and Noble bookstore and being unable to read any of the books on the shelf. Then you find out that there's the Talking Book program which was designed to open up the world of reading to the disabled. It is the only free program available for people. But you discover that because of the cuts back in 2007 the program is in disarray and materials aren't available.

[visual description: A little girl is shown holding a cassette player listening to a book on tape. To her right is a green cassette container.}

If only I had known , you'd think. I would have spoken up. How could our legislators let this happen?

We need to recognize that we let it happen when we don't speak up and let our legislators know what we think.

We need to look around and take responsibility as citizens for what is going on in how we are applying economics to the value of a human life. We tell people on Medicare they cannot have the wheelchair they need to go outside. That's the policy. So people are housebound for years. These people aren't celebrities so there's no camera whirring to show that they are locked up . There's no countdown of 23 days or 45 days for them. They are in house arrest for an unlimited period of time.

It's a disgrace. If we believe, as we profess to, that all human beings are equal and have inalienable rights - where are those rights in our system as it is where economics is the trump card that divides those who have access to basic health care and access to assistive technology?

Does anyone want to go tell the family I just talked to whose little boy can't get out of the house because they cannot afford to get him a power wheelchair and have no insurance coverage for it that their son has inalienable rights? I can't say that to them with a straight face. I believe it. I believe that child is equal to any other person on the face of this earth. And I believe that most people do. But we've been lulled into a state of inaction where we fail to take personal responsibility, even though we're in a democracy, for the policies our lawmakers set.

There are so many other people out there suffering because we are sitting by and allowing our legislators and our policy makers to apply economics to access to health care and assistive technology. When I post about such issues, like the Talking Book situation or the Right Wheelchair Campaign, I ask readers to join, to contact their legislators.

I do this because I hear the voices of those affected. In their voices I hear how their hearts and sometimes their spirits have been broken. No amount of money, no economic policy can fix a broken spirit or heart. That type of loss is unfathomable in any kind of equation.

Sunday, June 10, 2007

The Right Wheelchair Campaign

[visual description: The Right Wheelchair Campaign logo is shown. A stick figure pushing a wheelchair is shown to the left and the words Right Wheelchair Campaign are to the right. The lettering and figure is white and the background is blue.}

United Spinal is running the Right Wheelchair Campaign - to correct the problems in the system with current regulations such as the In Home Medicare restriction that affects a person's ability to get the right wheelchair for their needs. I'd ask you to click above and take a few minutes to read some of the stories about how peoples' lives are being disrupted and how people remain housebound unnecessarily due to current policies- and being in the wrong wheelchair.

This situation is made worse by the high cost of purchasing a wheelchair. An ultralight wheelchair's price starts at several thousands of dollars once you've customized it and can run as high as $6000. An electric wheelchair starts between $4000 to $6000 and can run as high as $12,000 - or more. (Comments are welcome as to prices you've found - I'm guess-timating here to give readers an idea.)

If you agree that these policies need to be changed, please join the Right Wheelchair Campaign.

"Let the cripples demonstrate"

[visual description: Jack Kevorkian at a press conference on Tuesday after his recent release from jail.]

sayeth recently freed Jack Kevorkian according to a news report in the Detroit Free Press which describes Kevorkian's reaction to Not Dead Yet, a disability advocates group and their efforts to make their opposition to assisted suiciide known through legal demonstrations.

It's sad that Kevorkian gets to use the media to belittle legitimate efforts by disability advocates through name calling. This kind of behavior has been coming from the right to die folks since his release (if you click assisted suicide, you'll see an opinion column by Russell Shaw that falls in this category as well).

But Kevorkian gets to make his point.

What are they so afraid of that they stoop to name calling and belittling disability advocates? It's because they do not want to address the legitimate arguments that are being raised as to the disproportionate number of assisted suicides Kevorkian did on people with disabilities, not with terminal illnesses. Instead of addressing this issue in public appearances, such as press conferences and his recent interview with Mike Wallace, Kevorkian instead tries to dismiss groups like Not Dead Yet via an old school yard trick - name calling.... make his point.

It's a very telling tactic. Language and disability (see my label below) reveals a lot about how people think. It can uncover attitudes or cause them. I'm not sure that Jack Kevorkian understands that some disabled people aren't bothered by the word cripples. Some are bothered by it when its used by able bodied people. Most,if not all, are bothered by it when it's used with negative connotations behind it... make his point.

We should all, able bodied and disabled, be bothered by the use of language like cripples when it's used with the motive to demean disabled people. Maybe this kind of language is still okay in this country because, let's face it, it's used every day. .

Although maybe by using it publicly, without meaning to, Kevorkian is helping to make our point.

Saturday, June 9, 2007

The Short Bus - a post

From the blog I Speak of Dreams, a post about the book The Short Bus which is about the author's experience of growing up in special education. The book is available at

Enjoyed visiting this blog which was part of Blogging Against Disablism Day - many great posts/info about dyslexia.

Assisted suicide bill fails in California

Disability advocates and other groups have been active in preventing the legalization of assisted suicide. A bill proposed in California did not move forward due to their efforts and work. Advocates noted that legalized assisted suicide is a bad mix along with for profit medical care for many disabled and poor people.

Via SDS list serve

Depersonalizing Discrimination

One of the biggest disability stressors people talk to me about in my advocacy work is the difficulty they have handling incidents of discrimination. Discrimination ranges from subtle behavior and language to outright exclusion. Somewhere in the middle there is a wide variety of things that happen that you have to decide whether to tolerate, act upon or handle with a sense of humor or other skill.

I've had many people come to me who begin to feel a sense of erosion of their self worth due to repeated incidents of discrimination. They ask "Why is this happening to me?" instead of reframing it to a wider social picture: "Why are people with disabilities being treated this way?"

One of the skills that I emphasize to people with disabiliites is learning how to depersonalize discrimination. Basically it means that you take a step back and remember that the party who is discriminating against you because of your disability would act that way toward the next person who comes along with a disability as well. This helps put the incident into perspective and can keep it from being as damaging to your self esteem.

There is a form of discrimination that happens where it is very difficult not to personalize discrimination. Some people who discriminate against disabled people, particularly in groups, consciously or unconsciously will personally attack characteristics of the disabled person. They rationalize their refusal to accommodate the disabled person or include the disabled person by picking on personal traits of the person unrelated to the disability. In my advocacy work I use the word bullying to describe this behavior.

This kind of exclusion is very hard not to personalize because it is aimed at your perceived faults and the attackers are careful not to say anything about your disability. In fact they are extremely politically correct. However, it is very important to learn to spot it. When a group of people does this to you and it results in social exclusion, it's important to take a step back and assess if it's discriminatory behavior.

Why does this happen? Sadly it's easier for a group to find fault with someone whose presence requires adjustments than to make those adjustments. It's easier to just make them go away. It can be very difficult for a person with a disability to undergo an experience like this. The herd mentality of groups, bullying behaviors and negative attitudes toward disability combine to create a toxic atomosphere.

For example, I had someone come to me who was attending a women's social group for several years. The meeting place had to be moved because of her wheelchair and she noticed that the label "selfish" and the word "entitlement" started to be tossed around by some of the group members. Over time the labels continued to fly, such as "arrogant" and "difficult". By the time she talked to me, she was in tears. She told me she never had an experience like this in a group before she became disabled. This alerted me to the fact that this might not be a case where the woman really did have social skill issues or personality problems but was being discriminated against. Members of the group had effectively closed her out by labeling her - but never using the disability directly to do it.

I told her that her best option was to depersonalize the discrimination and reach out for objective reality checks, which she already started to do by talking to me. It's important to consult with members of the disability community to get feedback and do a reality check with people you trust and who know you well to see if your assessment of the situation is correct. You then need to consider your options in this situation. A lawsuit may be appropriate , e.g., if it's happening at work and your career is at stake. You also need to assess if it's worth putting yourself through any more of this behavior as well as what you can realistically do about it. Balancing these two considerations is crucial.

Since this group was directly related to her professional career, the woman chose to stand her ground, depersonalize the behavior and hang in there. Once she stopped personalizing the behavior, she reported that it was easier to cope with the group dynamics and shake off much of the negative behavior. By doing this, she not only stayed in the group but noticed that the dynamics improved based on how she reacted to the behavior.

This is not always the outcome in these situations, but knowing how to depersonalize discriminatory behaviors is a good skill for all of us to have. It can be a powerful tool against many forms of subtle (and not so subtle) discrimination.