Hawaii

It was one of those "passing by" encounters.  I was walking in the parking lot and a man was passing me by.  I glanced at him, and he gave me a broad smile. "Arhh da le ba blah blah..." I stopped.  "I'm sorry," I said with a smile. "What did you say?" "Arhh da le ba blah blah..." Hopeless.  There was no way I could lipread this guy.  I had no idea what he was talking about.  No clue what he was saying.  By this time, we had both turned around and we were walking backwards towards our destinations. …

If there's one word that I can't stand to see in print or said/signed outloud--it's "retard." The same goes for "retarded." I hate it.  The word is very offensive.  And the word can be found in the new Ben Stiller movie, "Tropic Thunder," which will be released on August 13. Patricia E. Bauer, a mom with a daughter with Down Syndrome, is leading the way to get the offensive words removed from the movie.  Her site, News and Commentary on Disability Issues is receiving lots of comments on the issue: Once Upon a Time... There Was a Retard…

When Nick Vujicic sprained his ankle, he couldn't walk for three weeks.  For most people, a sprained ankle would be a nuisance and require some adjustment to get around.  For Nick, the sprained ankle made him feel disabled. Never mind that he was born without arms or legs and that most people would consider him disabled--Nick doesn't consider himself disabled. He was featured on "60 Minutes" recently and showed his ability to swim and play golf.  The video is not captioned but a transcript is included.  From the transcript: PETER OVERTON: This 25-year-old…

I finally did it. For the last few years, I've been telling the hubby that I want a jet ski/waverunner.  I started saving up a little bit of money here and there.  All summer long, I've been looking at Craigslist and trying to find something that doesn't have a lot of hours on it. I came close to buying one on three different occasions.  My neighbor was selling one and I wanted to go for it.  The hubby wasn't too sure.  Let's talk about it over dinner, he said.  No sooner did we make the decision to buy it and we saw someone drive off with…

If you're a parent of a child who is deaf or hard of hearing, you may want to participate in this survey developed by Oticon, a hearing aid manufacturer.  Oticon wants to hear from parents and find out what is needed after a diagnosis of hearing loss to provide information and support to families.  Here's a chance to make an impact on a company and affect positive changes: Oticon Parent Survey Oticon is also looking to award people who inspire: Do you know a person with hearing loss who is a role model for others? Nominate someone you know and admire for the Oticon Focus on…

I have to share my latest experience with you all. It was, I expect, the first of a lifetime of worries and fears regarding our, as of yet, unborn child. Okay, so it really wasn’t that big of a worry, but to me—a neurotic, first-time mother—it was a stressful event. So here’s the story: early last week I had the wonderful experience of seeing the baby move—not actually feeling it move yet—but if I would lie down and watch, I could see my belly move. Watching it jump slightly from a kick or punch...(read more)

With the elimination of recess, an intensified focus on learning outside of school, and the increased seriousness of youth sports, children’s opportunities for free play have reached the brink of extinction. Now more than ever, children need a sanctioned area in the home where play is not only allowed, but also facilitated and encouraged. Decades ago, a wise man recognized the importance of play by creating an entire neighborhood that has fertilized the imaginations of millions. Mister Fred Rogers...(read more)

With the elimination of recess, an intensified focus on learning outside of school, and the increased seriousness of youth sports, children’s opportunities for free play have reached the brink of extinction. Now more than ever, children need a sanctioned area in the home where play is not only allowed, but also facilitated and encouraged. Decades ago, a wise man recognized the importance of play by creating an entire neighborhood that has fertilized the imaginations of millions. Mister Fred Rogers...(read more)

Art was always in Ketra Oberlander’s blood, but she didn’t become an artist until she was 40. Ketra, who is blind, started dabbling in art by developing her own art collection. “I'd been a collector for years, starting out by setting aside a small annual sum and going to art festivals in my area, picking out a unique piece I loved, and buying it without regret I collected on a secretary’s salary. I've always had artist friends and I've always been around creators: artists, musicians,...(read more)

In many ways, road trips are an excellent choice for wheelers and slow walkers. You can pack as much equipment as your car will hold, and you never have to worry about the airlines losing or damaging your luggage. If you want to take a break, get some fresh air, stretch your legs, or even use the restroom, all you have to do is find the next exit. Additionally, if you’re traveling with an attendant, you won’t have to fork over more of your hard-earned cash for an extra airplane ticket — as long as...(read more)

From the New York Times: At a farm on Cape Cod, adults with disabilities are learning to grow vegetables and sell them at roadside stands and farmers markets. Employees of Cape Abilities Farm work up to 20 hours a week, at rates up to $10 an hour. It’s a for-profit venture, but it hasn’t yet turned [...]

Writing in the [UK] Guardian, Janet Murray says the UK needs to provide more options for young adults with learning disabilities after they finish school. Too many of these young people find themselves stifled by inappropriate adult day care centers that do nothing to help them gain skills and independence, she says. Less than five percent [...]

By Rick Reilly in ESPN The Magazine; earlier story from KDKA TV in Pittsburgh: Lawyer Craig Dietz swam in the Pittsburgh Triathlon recently as part of a three-man relay team he called Bob (at left). He came in 273rd out of 308 swimmers, which meant he beat 35 people who had all their arms and legs. Dietz [...]

From Federal Times: A complaint filed against the Social Security Administration by more than 40 current and former employees alleges that the agency engaged in systematic discrimination against employees with disabilities. The employees are seeking class action status for their complaint. Approximately 2 percent of the SSA’s work force is comprised of employees with severe disabilities, compared [...]

Writing in the [UK] Guardian, Peter V. Berns says the portrayal of a person with an intellectual disability in the film “Tropic Thunder” is offensive and shouldn’t be tolerated. He says the use of the word “retard” and other insulting language in the film could spark abuse, bullying and violence against people with intellectual disabilities. An [...]

Families with disabled children are struggling to keep food on the table, a roof over their heads, and to pay for needed health and dental care. But according to a new study from the University of North Carolina at Chapel Hill, these challenges are now falling on middle-income households and not just on poor families as previous research has found.

Consumers with hearing loss might think they are saving significantly more by purchasing over-the-counter hearing aids, but they most likely will be disappointed -- or could be taking risks -- when purchasing such aids, according to new research.

The traditional view of individual brain areas involved in perception of different sensory stimuli -- i.e., one brain region involved in hearing and another involved in seeing -- has been thrown into doubt in recent years. A new study shows that, in monkeys, the region involved in hearing can directly improve perception in the visual region, without the involvement of other structures to integrate the senses.

Scientists are reporting development of the first test for instantly detecting beef that has been contaminated with tissue from a cow's brain or spinal cord during slaughter -- an advance in protecting against possible spread of the human form of Mad Cow Disease. 

Robots may be the solution for people with disabilities who are struggling to regain the use of their limbs.

Whether planning a meeting, workshop or multi-day conference, your goal, no doubt, is to assist all participants, including those with disabilities, to feel welcomed and able to fully participate in the event This checklist is intended as a starting point in planning an accessible event, which likely requires more than ramps and wheelchair washrooms. The key is to consider every aspect of the event and what barriers a person with a disability - whether it be physical, mobility, hearing, sight, or cognitive - might face, and how you can eliminate or minimize those barriers to ensure all…

Several weeks ago I mentioned I, the Left Thumb Blogger, was holding out for the Thumb 2.0 rather than succumbing to the iPhone 3G Mania. Yesterday I stumbled across the next upgrade for the Left Thumb Blogger - a USB thumb drive! But, seriously, isn’t this the ideal promotional item for the Left Thumb Blogger to hand out? I could upload content to the thumb drive and then use it instead of a business card. How memorable would that be! My next step is to contact the manufacturer or wholesaler to inquire about a discounted price. The challenge there is that the order page is in Japanese…

My apologies for not posting frequently this summer. With my kind of cerebral palsy, I don’t do well in the heat. Hence, hot days are not productive, which is frustrating because I have blog posts and other things to do piled up to my wazoo - how high that is I’m not exactly sure. Some things are better not knowing! Stay tuned for the next Accessibility 100 post - A Checklist for Planning an Accessible Event. I am also working on another two-part article for Uptake. This one will be tips for parents and fellow travelers when traveling with children with autism. And, my kitty Faith…

For the past several weeks, I have been playing with StumbleUpon – a great tool for discovering new-to-me website and blogs related to my interests. StumbleUpon is also for social networking and meeting people with similar tastes. Finally, if used correctly, StumbleUpon can also dramatically increase traffic to one’s own blog. Getting Started with StumbleUpon Getting started with StumbleUpon requires two simple steps: Join StumbleUpon - you will be ask to set your username, other information and to select your interests (there are 501 to choose from!). Selecting your interests…

(Photo credit: weetabix) In his “What I Learned From…” group writing project for August, Robert Hruzek asks us to share our metaphor for life. Life is a garden maze immediately came to mind. Imagine a garden maze with hedges too tall to see over. There is no way of knowing what lays ahead until you are actually there, and then face the decision of turning left or right, again without knowing what is around the corner. Some paths are one-way; there’s no turning back. Others permit an about-face. Any plans for reaching the end goal can be thwarted by taking the wrong…

My 6 year-old daughter says "I want to be a boy. She says "I don't fit in the gender" for the following reasons:Doesn't like pink and purple and likes blackLikes rockDoesn't like BarbieLikes PokemonLikes video gamesHates princessesPlease give her examples of girls like her. Thanks! LOLShe forgets all the sterotypical girl thing she likes such as art, writing notes, gymnastics, flowers, and reading books about fairies and pound puppies.I know there are some kids who are genuinely questioning their gender. I think my daughter is more stuck in gender stereotypes which is fairly typical for a…

I confess tv is my drug of choice when life is stressful. When things are bad with Little T, I watch a lot of tv. In the hospital, at home holding him being human pillow, I watched a lot of tv. When life gets too overwhelming and talking about it just won't help, I watch tv. Being a Silicon Valley mom, I have a Tivo, so I only watch tv of my choice. The tv my kids watch is always educational.As drugs go, tv is wonderful, the best. It lets you forget about life for a while. It relaxes you. It produces a trance like state similar to that found in a good narcotic. Then you can turn the thing…

I read a post that made me cry. It was about a child that died. But what stunned me and made me feel both sad and angry was the fact the post implied that babies are safe in the US. Unfortunately according to a CNN headline, the The U.S. has second worst newborn death rate in modern world.My baby was almost one of the newborns that died. It took three hours to stabilize him, then he was whisked away to another hospital. My husband frantically followed the ambulance in our car. As I sat bereft in my maternity room, a doctor called and told me "We have to operate on him to save his life." and…

Jed blogged about cutting back on meat. Like him I don't eat red meat. Unfortunately I didn't find Mark Bittman's article "Putting Meat back in its place" to be at all helpful for my needs though others may find it useful. Unlike Jed, I have seen plenty of articles that address cutting back on meat or becoming more vegetarian while on briefly touching on the reasons. Jed says the reasons aren't addressed, but they are briefly mentioned. The vegetarian and sustainable and slow food movements are quite diverse. What is relatively rare about this article is it's in the NY Times. We have…

My daughter is "graduating" from Kindergarten on Wednesday and so will begin her first official summer. Sure she's had summer breaks in preschool, but I always signed her up for summer preschool. Before any type of school, she simply grew as the seasons passed and I needed to put her in slightly different clothes. For the first time, she has three months of no school aka summer.My daughter has opted only to sign up for swim lessons half an hour a week for the entire summer, three days of camp at Happy Hollow and one week of gym camp. So far she's refused repeated offers of other camps and…

I've been working on a post about the dangers of Merck's Gardasil vaccine, but Dr. Mercola just released a beautiful analysis of the vaccine's efficacy and risks so I'll post that instead. Here is an excerpt, but it's well worth reading the entire article:Cervical cancer usually develops in your late 20s to mid 30s. The protection period of Gardasil is estimated to be 5 years. That means, if you receive your first set of shots when you’re 10 years old, you’d need at least 2 to 4 additional booster shots to make it through your 30s. And THAT means you’ll have to expose yourself to the…

It appears that people who don't agree with opinions on Med Nauseum have flagged my blog as potential spam. I received a note from Blogger saying that their algorithms had flagged my blog as spam and that a Blogger employee would review my site. So far, no word back from Blogger. Funny thing is that I've been blogging for three years here, and have never been flagged before. I think it was not a spam-bot, but a human being clicking on the "Flag" icon that appears at the top of all Blogger blogs.I suspect the flagging occurred after I was invited to guest post on MOMocrats. My post Why Do Half…

Let's hear from you in the comments.

I am outraged that pediatricians will now prescribe statin drugs to children as young as eight. When I first read this news, I thought it was a parody of American Academy of Pediatrics guidelines, but I was wrong.There is no research showing statins will prevent heart disease when our children reach middle age. No research. If there were research, it would take fifty years to conduct it on our kids. And, what would be studied? Heart disease risk, of course, but also the risk of developing severe liver disease, muscle problems, and other side effects from taking decades of statins. If the…

Insomniac, a new book by Gayle Greene, who is both an insomnia sufferer and a professor, could become the "it" book for sufferers of insomnia. It is at once validating, infuriating, and instructive.Gayle interviews sleep doctors and attends sleep conferences only to find out that insomnia is not really being studied. It is a surprisingly common condition that patients don't want to admit, for fear of being dismissed as a hypochondriac.Personally, I never had insomnia until after I gave birth to my twins. Then, when they finally began sleeping through the night, I continued to awaken, or…

A few days ago, I returned from the national Osteogenesis Imperfecta (O.I.) conference. It was held in Washington DC this year. I've been to the bi-annual conference four other times in my life but I wasn't able to make the last two because they always conflicted with major swim meets (like the Paralympics!). The conference lasted for three days and included informational sessions during the days and social events at night. I'd been looking forward to the conference for months, but even my ridiculously high expectations were surpassed! [Photo caption: Me and my fiance at the…

Not many moons ago, I named my car Mabel...inspired by a summer where her reliability could best be described as MAYBE. A 1996 Mercury Cougar, Mabel's no spring chicken, but she's much more than a hunk of junk to me. Mabel represents a fight for independence that I braved in the trenches for over TWO years, which is also known as eternity in high school. I wound my way through the dizzying maze of vocational rehabilitation's evaluations, mysteriously long waiting periods, and somewhere around a million lessons. I didn't start out as the stellar driver I am today. AFTER all…

What are you doing to celebrate the 18th Anniversary of the Americans with Disabilities Act? I'm in full geek mode huddled in front of my computer, Pepsi in hand, and applauding (to myself of course) as I watch the amazing webcast of the National Forum of Disability Issues here on Disaboom. If you're reading this before 4:30pm EST, you MUST go check out it out too. I've learned, laughed, and even got a little teary and there's three more hours to go of of this disability goodness! [Picture catpion: Banner graphic of American flag with text reading, "Feel the power of the…

According to psychiatrists, a new study in Cyber-Psychology, and this psychologist in training (me!), blogging is good for your health! The article's not yet available online through Cyber-Psychology but you can read more about it here. The study tracked bloggers on a social networking site (much like Disaboom) and found that after only two months of blogging, people felt less isolated and happier with friendships compared to others that used the site but didn't blog. Other research indicates blogging has helped some people decrease anxiety and depression. Blogging also seems to…

Besides being members of our exclusive club that is! If you watched the ESPYs a few nights ago, you didn't miss the winners of the "Athlete with a Disability" category when you went to the bathroom, grabbed some popcorn, or in my case-took the dogs out. That award wasn't televised. But this blog isn't about just another oversight by the media to include people with disabilities in the mainstream. A couple hours after the award show, I looked up the winners and noticed an interesting commonality in both the winning male and female athletes with disabilities. Both winners…

A rumor is spreading that WHOIS data suggests Barack Obama, expected to announce his choice of running mate within 24 hours, may have selected Kathleen Sebelius. Who is for www.barackobama.com:Domain Name: BARACKOBAMA.COMRegistrar: GODADDY.COM, INC.Name Server: NS05.DOMAINCONTROL.COMName Server: NS06.DOMAINCONTROL.COMWho is for wwww.obamasebelius.com:Domain Name: OBAMASEBELIUS.COMRegistrar: GODADDY.COM, INC.Name Server: NS03.DOMAINCONTROL.COMName Server: NS04.DOMAINCONTROL.COM The only other vp candidate with a perfect match is OBAMABIDEN.COM. ObamaSebelius.com is registered through…

Avid readers of the Disabled Politico blog, now's your chance to make a difference: Disaboom is conducting what, to my knowledge, may be the first political poll targeted specifically at individuals with disabilities! Although one in six Americans is living with some sort of disability or functional limitation, politicians rarely take much time to reach out to this minority community.   If you consider yourself a disabled politico, or just a person with a disability and an opinion, please answer the current Disaboom polls by Friday, August 22nd. The more responses are…

When Barbara Wagner's lung cancer returned, the Oregon woman was prescribed a chemotherapy drug, Tarceva, that could lengthen her life and provide comfort. Then, she was notified that the Oregon Health Plan wouldn't cover the cancer drug, but would cover palliative (comfort) care, including a doctor-assisted suicide.   “Treatment of advanced cancer that is meant to prolong life, or change the course of this disease, is not a covered benefit of the Oregon Health Plan,” said the unsigned letter Wagner received from LIPA, the Eugene company that administers the Oregon…

Danieal Kelly's last word was "water." Her 42-pound body was covered in her own feces and maggot-infested bedsores when found. Her mother, Andrea Kelly, has been charged with murder in connection with the 14-year-old disabled girl's death. Her father, Daniel Kelly, is charged with endangering Danieal's welfare.   Now, Danieal's parents have filed a wrongful death lawsuit, naming the state of Pennsylvania, the Department of Public Welfare, the Department of Human Services, and the city of Philadelphia, as well as the private…

The 2008 Democratic National Convention is coming, and the Disabled Politico Team will be attending and live-blogging from the Pepsi Center in Denver, Colorado. The Convention is sure to be a historic event, and so too will be Barack Obama's acceptance speech at Invesco Field. If you have an opportunity to attend, here's what you need to know about disability, accessibility, and the 2008 Democratic National Convention. We hope to see you there!   Disability Advisor Becky Ogle   Becky Ogle is Senior Advisor on Disability for the Democratic National Committee. Her…

Kiersten Niles, who uses a service dog for seizure alert and hearing assistance, says she was refused service at Dunkin' Donuts in Manchester, New Hampshire last month. Ms. Niles was told that her service dog, Loretta, was not welcome in the store.   After Niles was told to leave with Loretta, she called Judi Bayly, of Assistance Canine Education and Support Inc., an advocate of service dogs. Judi's dog, Crystal, helps her with mobility and detects health changes. Judi and Kiersten returned to Dunkin' Donuts together, armed with a brochure showing that state law and…

Found this on the web, and it's pretty true of our own Disaboom Discussions!    How many forum members does it take to change a light bulb?    1 to change the light bulb and to post that the light bulb has beenchanged. 14 to share similar experiences of changing light bulbs and how thelight bulb could have been changed differently. 7 to caution about the dangers of changing light bulbs. 1 to move it to the Lighting section. 2 to argue that the Lighting section was really intended for candle-related posts, then move it to the Electricals…

1. Feedback Solicited?:     2. Neener, neener....       3. The Usual Suspect:        4. Cheaper by the Flock:       5. Panhandling at $4.00/gallon:      6. Highway Robbery:   7. Partial Payment:     8. Fond Memories:     9. Taken for a Ride:     10. The Sweet Smell of Price Gouging:     11. A Loan-ly Road:     12. Early Symptoms:     13. Uphill, Both Ways:     14. A Full Tank:     15. Economic Stimulus:     16. That'll be…

A young man enters a confessional booth.   He confesses, "Bless me, Father, for I have sinned. I went out with a girl of loose morals."   The priest says, "Is that you, little Johnny Parisi?"   "Yes it is," says the boy.   "When did you sin?" asks the priest.   "Last Saturday," confesses Johnny.   "With whom did you sin?" inquires the priest.   Johnny says, "I don't want to ruin her reputation.   "I'll find out anyway when she confesses. It's best just to tell me…

Every year, English teachers from across the USA can submit their collections of actual analogies and metaphors found in high school essays. These excerpts are published to the amusement of teachers across the country. Here are the most recent winners: 1. Her face was a perfect oval, like a circle that had its two sides gently compressed by a Thigh Master. 2. His thoughts tumbled in his head, making and breaking alliances like underpants in a dryer without Cling Free. 3. He spoke with the wisdom that can only come from experience, like a guy who went blind because he looked at a solar eclipse…

A few months ago I was having a conversation with a close friend and he mentioned as sort of a criticism that if I were asked to list the top five words to describe myself, the top one would be bipolar. I responded by saying that my top adjective is advocate. What I choose to advocate for is disability rights, and so bipolar, as well as CP, happen to fit under that.This conversation has stuck with me, mainly because looking back on my life I never thought that would have come out of my mouth. So I started thinking, and realized how powerful adjectives are. Adjectives tell us how we think and…

I never realized how much work it takes to put a carnival together. It could be up late, but it'll be up. Should have started earlier...

*What 'Tropic Thunder' Thinks Is Funny* By Timothy Shriver Monday, August 11, 2008; A15 I've been told to keep my sense of humor about the film "Tropic Thunder," which opens this week. Despite my requests, I have not been given the chance to see the movie. But I've seen previews, read about it and read excerpts of the script. By all accounts, it is an unchecked assault on the humanity of people with intellectual disabilities -- an affront to dignity, hope and respect. Consider this exchange: Ben Stiller's character: "There were times when I was doing Jack…

MDLC has embarked upon a major initiative to expand the power of the disability community voting bloc. The purpose of the voter forums is to register more people with disabilities to vote, give the community an opportunity to hear from the two major parties their positions on issues of importance to people with disabilities, become visible to the campaigns, provide an opportunity for people to become familiar with the voting equipment, and get our community informed, energized and motivated to go to the polls.  Another purpose is to survey the disability community regarding MDLC's…

  This is a reminder, in case you put the first Alert aside, that your Comments on the proposed ADA regulation changes are urgently needed by August 18, to the US Department of Justice. Many people have asked us, what if we can't address every topic? Just click on the topic you're most interested in, or the top 2 or 3, and fashion a short comment on that subject, based on the summary at the top of the page. Or you can simply copy and paste from the DREDF website, if you wish.  Note that the most important issues are starred (**) below. Please go beyond forwarding this to…

I AM NOT CAPTUREDI face a giantIt's not one you can seeYet, it is not invisibleThe giant insists on winningIt's hold reaches deepI am trapped within its graspThe giant holds me tight, yetI am not captured.We live as oneThe giant feeds on motor neuronsSlowly, it disables my limbsThe giant wants all of meYet, not all is his to takeFor my soul belongs to JesusI am not captured.Peace prevailsThe giant has taken my voiceIt has taken my throat tooYet, my spirit remains freeWhat can be seen belies truthThere is more to me unseenI am not captured.There is strengthA deep well abides withinI live, even…

ALS Association Research Grants AnnouncedNew research grants by The ALS Association will support investigations of new disease models, pathogenesis of ALS, biomarkers of disease progression, and development of new treatments. The research portfolio supported by the Association is designed to speed therapy development by attacking ALS on all fronts, from basic research to clinical trials. Each year the Association funds the most promising research from hundreds of investigator-initiated proposals. In addition, it actively seeks researchers to undertake studies identified by the Association as…

"Every human being is the author of his own health or disease." --Buddha"Deep in my heart I know that Budda was right. Somewhere within myself lies the cure. I am certain I will find it. Nothing less is acceptable."- Drew J. S. III

http://www.youtube.com/watch?v=8neQJlTvMSs

Drew,what's up man? Long time no talk. I haven't seen you in awhile, but read your blog daily and am truly inspired by your courage and fight. It's very humbling when I think about the many things I used to stress about at work and in my personal life and then compare it to the challenges you experience every day. Sadly I have a colleague who I've worked with for years who was recently diagnosed with brain and lung cancer. Just as I told her, God is just testing you to see how strong you are. Make sure you continue to fight and show him how serious you are about beating this sucker! Only the…

Hey all you Denver area Disaboomers listen up! Disaboom is hosting its first ever Community Meetup next Wednesday evening from 7-9pm at the VSA arts of Colorado/Access Gallery (located in the arts district in Denver off of Santa Fe).  Dr. Glen House, founder of Disaboom, will be speaking on what it means to Live Forward.  Refreshments will be provided.This should be an awesome time to get to know one another in person and to connect with new people.  Plus there's free food and you'll get to meet Glen!Limits spots are available, so please RSVP if you plan on attending…

What do you get when you put a large assortment of people with different backgrounds, opinions and ideas in a place of public discourse where almost anything can be said without fear of meaningful non-verbal reprisal? What if the identity of these people is masked by distance and arbitrary screen names? You get a chat room full of people who, despite good intentions, often degenerate into reactionary villains bent on winning arguments and verbally assaulting those who disagree with them or frustrate them.  You get selfishness and anger and large amounts of pettiness.  I guess…

For the kid who has everything...   --------------   11-yr-old Internet superstore Allegro Medical recently unveiled a $387,568 jet powered wheelchair illustrating that the sky is the limit when it comes to making your wheelchair “beautiful”.  Probably not exactly what National Wheelchair Beautification Month founder Horace Knowles had in mind when he invented the July holiday, but Allegro considers its ‘Jet Chair’ beautiful nonetheless.   The image of the supercharged wheelchair, complete with jet engine, fat run-flat high pressure tires, a rear airfoil,…

Here's a disturbing article about how the TSA seems to be abusing their power and making unreasonable demands upon passengers that could be averted with a bit of common sense (CBS Chicago, via Boing Boing): When travelers go to the airport, they know what kind of security to expect: luggage searches, metal detectors and shoe inspections. It's all part of our post 9-11 reality enforced by the Transportation Security Adminstration. But as CBS 2 Investigator Pam Zekman reports, thousands of travelers have complained that some of these screenings can become abusive and even x-rated. In…

Disaboom will be presenting a live Webcast of the National Forum on Disability Issues this Saturday from 12:30pm to 4:00pm, ET.  The Forum is being held in Columbus, OH. The event will commemorate the 18th anniversary of our civil rights law, the Americans with Disabilities Act and will feature time slots for the presidential candidates to individually present their visions for the future of disability policy in America followed by questions by Judy Woodruff, news anchor and journalist ("The News Hour with Jim Lehrer"), who will act as the Moderator. The latest news…

Now that we've concluded all of Jay's medical visits, concerning his swallowing (at least for now), we can now focus on making him more comfortable in his wheelchair. Unfortunately, he has terrible scoliosis which causes him a great deal of discomfort. Since I only have a few weeks remaining before I resume teaching (waaaahhhh, I don't want to go back), I'm trying to schedule all these appointments now, so I don't have to miss work. We already visited the dentist, then the swallowing appointments, now it's his wheelchair. Which leads us to our appointment at the…

The day for my sons "cookie swallow" test finally arrived. We weren't looking forward to going. Simply because the hospital is very large and extremely uncoordinated. For example, we called ahead to radiology requesting that a cart be positioned in the lobby, because the wheelchair will not fit in the car. I would just carry Jay from the car, to the cart, then up the elevator to Radiology. Sounds simple, right? Not with this hospital! Radiology told us they only have wheelchairs (yet the hospital is full of carts at other departments), so they directed us to the front desk.

The day after I took Jay to the ENT, he felt his swallowing was worse. His complexion was pale and he felt warm to the touch. He was quite lethargic and queasy, so I contacted his nurse practitioner. Dayna was concerned there could be an infection. She said she could order an antibiotic, but if Jay was in a great deal of distress, he should immediately go to the ER. Jay considered his options, but felt it would be best to just go to the ER. We are so fortunate to live across the street from a hospital. It really is a convenience that is invaluable to our situation. I don't even need to…

In my last blog, I discussed the swallowing issue my son Jay was having. Well, we had our appointment with the ENT, what a disappointment. I know that doctors don't always display the perfect bedside manner, but this guy really took the cake. I don't know if certain doctors consider it too much trouble or just become comfortable with the typical "cookie-cutter" type patient, but when the Doctor took one look at my son in his wheelchair, it was obvious he was going to make this a quick examination. It was quite disheartening especially because I had used him myself, 15 years…

Trying to stay positive Tomorrow, I take my son Jay to the ENT. His throat is still bothering him, but at least it hasn't worsened. I just hope it won't be anything too serious, it is so difficult for Jay to open his mouth wide, because of the atrophy in his jaw muscles. However, he does have something great to look forward to. For months, he has been trying to plan a trip to Las Vegas. He asked all of his buddies, but for one reason or another, they couldn't find a date that worked. Well finally, he received two commitments from his old summercamp counselors... he is finally able…

I was at a hip-hop club with my crew Saturday night. It was pretty awesome. I'd like to preface this entry by saying that I do "sorta" dance from my wheelchair. I'm no Briana Walker or Auti Angel, but I hold my own. I use a powerchair afterall. Can't wow the crowd with wheelies. And you know how AB-folk love the wheelies :/ We had some sour apple shots then strolled out onto the crowded dancefloor at 1am. Perfect timing too. MIA's "Paper Planes" just started. We screamed like little girls and began to dance our asses off. And drunk people love me. It's…

It's funny all the bizarre things that can happen to you when you use a bunch of wacky contraptions to help you do things that most people take for granted. Take getting out of the car for example. The other day I was going to Target to buy a few things and hit up the bank. I parked, hit the EZ-Lock button to unlock my chair and back out of my place in my van, but I wasn't moving. I hit it again, but still, I'd try to drive my chair back out of the locking mechanism under my chair but it wouldn't let go. It was like a Venus Flytrap or a Hungry-Hungry-Hippo. I wasn't going…

...what's it like? This Fall I'll likely be going on two roadtrips. They won't be far, about 4 hours each way in total, but....this will be the first time for me to ever drive myself for an extended period of time to anywhere further than an hour. Will I get tired and poop out after an hour and a half? And then need to stop at every available rest stop to regain my quad strength? Or, should I eat a whole punch of pasta, protien bars, and for good measure, a few Red Bulls, before my crew takes off? Does anyone out there have any advice for a C6 quad driver? I used to date this…

So I'm turning 29 tomorrow. I'm not looking forward to it. I still feel like I'm 21, or 22, so doing the math between my birth year and the current year every year has become nothing but a depressing chore, come each August. But it's something you gotta do, because what they say is true: You DO actually forget how old you are as you get older. Am I turning 27? 28? No that's right: 29. Kill me now. Nobody wants to get old, disabled or able-bodied. It's just a common thread every human shares. I did however have a recent revelation regarding age the other day. I was…

As a wheelchair-user, the dilemma of carpet vs. wood floors is a common thread among our community. They say wood floors are better if you use a manual chair, because then (obviously) pushing is a breeze. Then some say carpet is better if you're a quad who gets cold easily and wants carpet to keep their place warmer and cozier. Oh, and if you're on a budget carpet is cheaper. But wood floors look better. Decisions, decisions....what's a girl to choose? I moved into my new place in 2005 and the carpet was new. It's been almost 3 years now and after driving around on…

The thing with dealing with Emma’s, especially us crippled Emma’s, is that sometimes we like to have falls. Falls when transferring are particularly popular and a not uncommon subcategory of that type of fall is the one where the Emma lands on the footplates of the wheelchair.  Sometimes this is due to missing the seat of the wheelchair, other times its a simple loss of balance/trip/whatever and hit the ground or similar fall.  Either circumstance has the same results. When this happens with the Quickie manual wheelchair this causes particular problems due to the presence of…

It was really nice to see Auntie Sheila and everyone this afternoon and I did feel a bit more cheerful when I was out. I think part of the blah down-ness might have come from the fact that I’ve not done very much of anything other than computer time, knitting and a bit of reading over the last few days.  I definitely couldn’t have been in the bureau this week.  Overdoing it at the weekend and then spending a lot of time at home recovering is not a good mix for me mental health wise.  I guess those two mornings a week where I’m in the bureau do make a difference to me…

Today I think/feel/fear is going to be a down day. Ideally I’d just like to hide away at home and around here doing my own thing.  But my Great Aunt is visiting my parents for the day and I promised to join them for lunch.  So I will go. I’ve spent a lot of time this year and last year making sure that if I don’t do something it’s not because of a can’t be bothered down-ness type thing.  And I’m very proud of the fact that I’ve managed that really well.  I think I’ve not done it for the entire time if that makes sense.  Can’t remember…

I obviously didn’t weigh myself last week due to being at Rutland and doing all sorts of regatta related things.  So when I weighed myself this morning it was two weeks since my last date with the scales. And I’ve stayed the same weight. Which actually was my goal and I am very pleased with. Eating last weekend was very nice but not very good if that makes sense and this week has been better but no where near fabulous or even really what it needs to be it seems for me to lose weight.  But I held steady amongst all that and that is in no way a small achievement.  I’m not…

Lee Evans last night was pretty funny at times.  But I couldn’t help thinking that some of the jokes were inappropriate as a pwd.  I don’t think he actually realised that they could be viewed that way to be honest which in a way makes it hard to be too mad about it all.  So that was disappointing as a whole.  Don’t get me wrong, I wanted to go and I’m glad we did go.  I did laugh a lot and I did enjoy a lot of it.  There was just something of a pall cast over it for me. Out of the four of us who went, I’m the only one who didn’t love it to pieces and…

Okay, this is mostly not my business, what others argue about in the autistic community, since it so far has had nothing to do with me directly. But I’ve noticed examples of argument on a couple of autism lists I’m on. I wonder why things have to get taken so personally. You’re attacking me, I don’t like the way you’re running your life, you’re ignoring real threats, blah blah blah. Yes it’s true, I’m completely ignorant of the various situations in which said arguments are taking place. That’s why I’m only venting out my…

We’re leaving for a brief vacation with Mom and Sister, later this afternoon. We will be in Western CT on a lake. Our neighbors have rented a place there for a month, and we are going to stay there with them for a few days. Our father will join the party tomorrow after he gets off of work. We’re going to hike there and do other fun stuff. I can’t wait to go! We’re all very excited. I will miss our kitty Dennis for those days; Ivan and The Integral tell me that he will be okay and that he will miss us too. He always gets excited when he sees us, and he can tell who is…

Our blog has been accepted for membership into the Autism Hub. We have yet to figure out just how to put a button on our blog that says it’s a member blog.  We have a lot of errands to run, so we can’t really write a whole lot now.  But we (in addition to being autistic, there are three active people in this one body) are very passionate indeed about all things related to autistic rights, proper autistic advocacy, and the like.  We hope to learn alot from you (fellow AH bloggers) and we hope we can contribute something to you all as well.  Warmly,  Ivan, The Integral, and…

A fellow autism rights blogger has written this short post concerning autistics.org’s need for assistance. It was written a short time ago, but still consider donating to the site’s webmaster for hosting costs and maintenance fees. It’s not fair for her to have to beg for money from people who claim to support her cause every time she runs into an emergency. This isn’t meant to be admonishing, it’s just what’s been happening. If many people gave a small amount to her paypal address every so often, she’d be able to cover for mishaps much more readily…

Okay, I’m going to go on a bit of a semantics adventure here. We all hear about people who rail (rightly) against drinking and driving and how terrible it is, right? Well, when they are talking about drinking in that context, they almost certainly mean alcohol and nothing else. I believe that drinking ANYTHING and driving at the same time has the potential to be very dangerous to the driver, and to others on the road. People may respond to this saying “Oh I’ve been sipping on coffee en route to work for x years now, and I haven’t had a problem yet.” Well folks,…

The new Disability Blog Carnival is up! This is a great one with the topic "adjectives." This is my third carnival I've submitted something to, and it's so much fun writing the entries and then reading how others have tackled the topic as well. So get over there and start reading!!!!

Sticks and stonesMay break my bonesBut words will never hurt me.For this Disability Blog Carnival on ADJECTIVES, I knew I wanted to write about adjectives like “handicapped,” “crippled,” and “lame.” But this didn’t all coalesce in my mind until I was at Target today. I was in line, and the cashier, who was an older woman, was flirting with this young kid who also worked there, “razzing” him about his earring. He was a very tall and lanky and kind of awkward. After he walked away, she turned to me and said, laughing, “They call him Cripple.”Everything came to a screeching…

When my son was some orthopedic issues, I thought I knew what it meant because I had just spent the last 5 weeks of my pregnancy with a broken ankle. I was miserable and not a “good patient.” I complained constantly, my arms hurt from hoisting myself up, and I was just downright miserable. Maybe some of it was because I was 9 months pregnant and walking on one leg on crutches, but who knows how I would have been otherwise.On top of what I already “knew,” the doctors had dire predictions for Jordan. The first one said he might have trisomy 18, meaning “mental retardation, heart…

Jordan and I have gotten really into "playing Play-Doh," as he calls it. Kneading the Doh, creating whatever we want--including mainly food, for some reason, as well as chairs, beds, and other items his mini penguin, Pengu, is apparently in desperate need of--I think Play-Doh can teach us a lot about life. Jordan often says he "can't" make a certain thing he wants to make, or he says, "I don't know how." I tell him, first of all, there is no "can't" in our house. Second, even if what he makes isn't perfect, he just has to TRY. And with practice, what he makes will turn out better each time.

When my son was born with a dislocated knee, dislocated hips, clubfeet, and missing the lower part of his spine, and they said he might never walk (might not even LIVE), I thought I knew what it meant. I had just spent the last 5 weeks of my pregnancy in a cast from my toes to my knee, after breaking my ankle when I was 8 months pregnant.Anyone who has been 8 and 9 months pregnant knows how often you have to go to the bathroom. The first night, I had to sleep on the sofa downstairs, and with no access to a bathroom on the same floor, my dad brought over his portable toilet they use while…

Darn, I thought it was my own state of New Jersey that does: According to the most recent figures released by the Centers for Disease Control and Prevention in 2007, about 1 in 150 8-year-old children in multiple areas of the United States had an ASD, and New Jersey has the highest prevalence rate, 1 in 94. An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81. The CityPages article mentions a 2001 CDC study but not the more recent one in 2007, though it does cite the 1 in 150 figure. For the 1 in 81…

A Tennessee high school student, Eric L died on August 18th after suffering head trauma at the Byington-Solway Career and Technical Center last Wednesday. Law was autistic and a special education student. From VolunteerTV.com Oaks says two employees are on paid administrative leave pending an investigation. Oaks says the student fell from a vehicle, but would not elaborate on the details because of the ongoing investigation into the incident. Attorney Greg Isaacs identifies the student as Eric Law. Isaacs is representing Law’s family, and says Eric was a special education student with…

Researchers at the University of Missouri-Columbia are studying how to use 3-D imaging to analyze the facial structures and brain abnormalities of autistic children, in the hopes of developing a formula to identify autism in young children. From a press release: “When you compare the faces and head shapes of children with specific types of autism to other children, it is obvious there are variations. Currently, autism diagnosis is purely behavior based and doctors use tape measurements to check for facial and brain dissimilarities. We are developing a quantitative method that will…

Yes, we’ve been on vacation; meanwhile, the usual back and forth about vaccines and autism rages: CBS news say they’ve unearthed “details of a third case of vaccine injury in a child born in 1974″—as Kev’s noted, Kathleen Seidel described this same case five months ago on the Neurodiversity blog, CBS news is catching up in these dog days of summer. No mention of autism and vaccines is complete without a nod to mercury: Translating Autism reviews a recent study in Journal of Toxicology and Environmental Health, Part A, entitled An Investigation of…

Yet another report of an autistic individual—Angel Brooke McKinnley, a 22 year old woman in Provo—-who is missing. There’s been numerous stories about autistic children and adults missing this summer, and Project Lifesaver has been mentioned a couple of times. A friend’s son has one of the Project Lifesaver devices and I was surprised at how big it is; it’s a lot of plastic strapped onto a small boy’s wrist. He’s okay wearing it but I don’t think Charlie would tolerate it at all and would probably try to get the device off his wrist, and not be…

I've been painting and thinking today.I've been painting the window sill and back door of the garage today. I find it very relaxing to move the brush up and down, each brushstroke another small step to changing the colour scheme of the house. And while I concentrate on keeping my brush steady and straight, away from the glass window or brick wall, my mind goes wild. The more tricky the painting, the wilder my brain goes. Backwards and forward through the different sides of the argument, while the brush goes slower and ever more steady along the brick wall.This morning, I read another one of…

On the Monday afternoon Possum and I were talking after we finished his homework. The conversation went to Oma and Opa, who are soon coming to visit us from Belgium. He wanted to know how many more weeks until they are here, and how long they would stay.Possum was pleased to hear it's only 3 more weeks till Oma and Opa arrive, and even happier to hear that they are staying for nearly 7 weeks. Then I told him that they would be going to Perth for a week and a half while they are here in Australia.And Possum, tired from his first day back at school after being sick, promptly burst into…

It's been an interesting weekfor me. I've been at the receiving end of a cyber-bollocking. I've not been sure how to react which is why it took me some time to write about it. I'm still not entirely sure about all this - but it's time to post. Maybe the process of writing will help to enlighten me further.An e-mail group I belong to has been vigorously debating the post-modern idea that the personal is political and the political is personal.You see, some issues came up on the group that have dealt with language around disability. I have been very vocal on language issues and have very strong…

We have a thief in the house.Last Saturday, Daddy and Beaver had a sleep in the big bed and Possum, Boo Boo and I went to the park. After the park I bought the kids some ice-cream, and after they finished, I got a take-away one for Beaver, and a really nice biscuit for me. Which somehow ended up on the kitchen bench top while I was attending to other matters.Until Possum screamed "Mam, she's got your bikkie"...Now you see, this wheelchair we've got for Boo Boo has this nifty little control that lets her move the chair up higher. Like this.This means she can access the table - very handy when…

Thanks to the organisational skills of our friend and old neighbor Shannon and her two gorgeous girls, Boo Boo and I went to a small Hi5 concert in a nearby suburb.Boo Boo loved it and has been bitten by Hi5 fever again.She asked to watch a Hi5 DVD on TV yesterday evening and jived away in her walking frame.See?Make an on-line slideshow at www.OneTrueMedia.com

I popped by Shannon's blog today and she had played an interesting game on her computer. She'd typed 'Shannon needs' into Google and then published some results. I was having a quiet few moments so I decided to do the same. I googled 'Dave needs' and the list was interesting ... here's the first ten.Dave needs a shave.Dave needs a shower.Dave needs a rest.Dave needs a timeout.Dave needs servers.Dave needs a lover.Dave needs rehab.Dave needs therapy.Dave needs a big apology.and the last one, quite simply states:Dave needs help.Not being entirely egocentric, I thought I'd look up Joe Needs and…

So, I learned a few things about a wheelchair from hanging around with a 14 year old boy and his dad. The primary lesson is that a wheelchair is fun. That's right, fun. It ain't a tragedy. It ain't a cause for pity. Instead it's cause for mischief, play and feats of strength. To me it's simply a means of transportation. But I was wrong. It's much more than that.It started while shopping in Zellers for soy milk. I kid you not. I was pushing myself and finding the work of pushing was very, very difficult. I didn't really notice because I've been wanting to get the chair tuned up for awhile now…

On our last full day of our mini-vacation, we decided to take Mike and his son Joseph to the war museum here in Ottawa. We'd been there a few months before but only got about half way through. We thought it would be good for Joseph to see the museum - it's kid friendly, beautifully laid out and fascinating. Joe and I went to get the tickets and on buying them saw a poster for a special exhibit called, 'Deadly Medicine: Creating the master race" that has been borrowed from the United States Holocaust Memorial Museum.Needless to say I wanted to go. The special exhibit hall is right after entry…

We saw a guy eat razor blades.We saw another guy hammer a nail into his face.Oh, and the woman who did splits on a rope strung between poles.And the other woman who hung on a ring balanced on her neck.We went to an old fashioned Carnivalle.And saw someone eat fire.And saw someone sit on an operating electric chair.And saw someone catapult through the air.We went to the fair.Where someone swallowed a sword.And someone else drank a cup of boiling water.And then someone bent a steel bar with his teeth.Yep we went to Carnivalle Lune Bleue ...Where the people who were different.Were the coolest…

We arrived in Montreal to find that it is Gay Pride weekend here. We didn't realize that when we booked the holiday but were pleased to be here for the action. After going to a movie and having lunch we were going to go for an afternoon beer at one of the bars on St. Catherine street. We were quite lucky to find parking just off the pedestrian mall that had been created for the celebrations.There were several small booths that had been set up on the mall all staffed by young and enthusiastic volunteers. It appeared that the booths had been grouped into various areas and we entered into the…

It's a little Google fun, brought to you by the big, bored Internet.I Googled Shannon needs and found that I am more high-maintenance than I thought.Shannon needs to be more vigorously investigated by the Irish government. Shannon needs an alibi. Shannon needs to stomp that Latin out. Needs your support. Needs Atlantic Roadway now. Needs to stop singing. Needs to learn to soothe her moods with something other than food. Shannon needs more cred. Shannon needs no more treatment. Shannon needs a car.And Shannon needs to shake her booty more.And I'm going to add one more thing: to put away the…

Erudite Mondays at HalfSoled BootsVolume 5, Number 3 The OtherDavid GutersonSeconds ago I turned the last page of David Guterson's new book, The Other. In between setting it down and picking up my laptop, I murmured, involuntarily and in a subdued voice, "Wow."At the risk of sounding hyperbolic, this is a huge book. Not physically - there are only 256 pages - but thematically.Written in the first person, this story is a complicated, delicate retrospective of a long friendship between boys who become men - boys who inhabit each other's thoughts and emotions. John William Barry is the son of…

Will somebody please come over here and teach my stupid dog not to eat fridge magnets?Look at him. You'd think he wants what's INSIDE the fridge, right? Wrong. He wants to finish the snack he was having when I caught him earlier today.On the other hand, scooping poop is really easy - you just walk around the yard with a spade held a few inches off the ground, and Zing!

Happy Birthday to my darling sister Gwen..........wish we were here.XOXO

Thanks everybody, for your well wishes on my anniversary post. Mr HalfSoledBoots even read it, after I told him his anniversary card was online and he'd have to go to the blog to see it.These photos are very dark - I took them outside hoping for some natural light, but there was just enough to disable the flash and not enough to show the colours. Drifting is coming along beautifully. I've finished the sleeves and the front, which means I would be completely done the knitting except that I need to knit another back since I ripped out the first one.When you're knitting fair-isle, as everyone…

I found this excellent post by AZ that talks about promoting awareness and supporting individuals with Non-Verbal Learning Disability. Most of her ideas could work either in a small town or major city. I especially like her suggestion of a mentorship program.

There are several known causes of Asperger syndrome and related disorders, the most common being genetics (believed to be responsible for my case). Several others are:-premature birth- brain injury-illness or physical trauma during pregnancy-vaccines?*-etc.*There is no conclusive evidence that vaccines are responsible, but some individuals still remain suspicious of a link.Often a combination of genetic and environmental factors are responsible for the development of autism spectrum disorders. This is known as the gene-environment interaction. For instance, I was a full term baby, but my…

I was diagnosed with NLD with autistic tendencies at age 4 when living in Newfoundland. At age 13, I was labelled as having Asperger syndrome. There is some confusion among professionals about which label fits. In my opinion, it doesn't matter because they are almost identical.I spent my childhood in various small Maritime communities where there were few outside resources and services. Other than one excellent occupational therapist, my Mom was my therapist who did most of the work with me at home.We related letters of the alphabet to things in the real world so I could verbalize how to draw…

One interesting thing I learned in the neuropsychology course I took last year was the role of the cerebellum in autism spectrum disorders, particularly Asperger syndrome. One of the primary effects of this is impaired implicit memory, meaning in simple terms, difficulty remembering things that are not consciously remembered (e.g. the rhythm of running, adaptation to loud noises.) This can also cause problems with depth perception, abnormal eye movements (e.g. nystagmus), and a I probably forgot a few.In My Case: -I have difficulty learning things involving rhythmic movement. -I like…

As, I have said many times before, every individual with AS is unique. However, this post is about similarities among individuals with AS and related disorders that are not necessarily listed in the DSM-IV.Some of My As-isms:-talking to oneself when alone (often creating scenes for my writing) -love