Saturday, January 30, 2010

Botox Use in Cerebral Palsy: Deaths Are Being Reported

Botox is being used to treat spasticity in children with Cerebral Palsy. Botox relaxes muscles, relaxed muscles are less spastic muscles and therein lies its efficacy.

However, the dosages are much higher in children than in adults. And while it is usually safe there have been reports of Botox traveling to other parts of the body like the lungs and causing botulism type symptoms, including difficulty breathing. The FDA recently required manufacturers to warn patients about these dangers.

There have been several reports of death in children who have been given botox for cerebral palsy, though the company is not yet acknowledging any link between the drug and the deaths.

In California, one family is suing the Botox manufacturer Allergan for the death of their 7 year old daughter.

The lawyer for the family examined an Allergan employee about another seven deaths which may have been linked to botox.

The US FDA has issued warnings concering deaths related to Botox use.

Canadian authorities are also investigating reports of botox spreading and causing fatalities.

European agencies have also reported patients who have used Botox and died.

While Botox appears to be safe for cosmetic purposes there are still many questions about the use of Botox for other purposes.

Wednesday, January 27, 2010

MSN / Bing Has The Best Response To Copyright Infringement (DMCA) Complaints

About two weeks ago, I learned that one of my best wheelchair articles had been illegaly copied and spread around the internet. I was stunned.

I had spent days researching an important article about wheelchair ramps. I even had two experts review it to make sure it offered quality information. Needless to say, I am very proud of my work. I was careful to write at the bottom of the article that the article is copyrighted and not to be used without permission.

Imagine my shock when I placed a line of my article into a search engine and found nearly 100 copies on the Internet in addition to my own. In seconds some people had simply copied and pasted my writing into their own websites, claiming ownership of my hard work!!!

Turned out that there were three people behind the copyright abuse, two were in the ramp building business and they were relatively easy to manage. A DMCA notice to the company with a copy to the Internet provider and they were quickly taken down. The third has been a nightmare.

A jerk with a bad website selling used wheelchairs on Ebay, copied my prize article and submitted it under a pen name via an article submission wizard. Like a cancer this thing has spread so far and wide, it is nearly impossible to stop. But I am trying and will not stop until I have taken them all down. I am contacting website owners and hosts and sending take down notices and slowly some of the better quality websites are responding.

But there have been two big surprises along the way.

First, the host of the offending Used Wheelchair website, Bluehost, has shown a surprising lack of interest in this matter. I have written to the Bluehost legal department asking them to close down the offending website. How can a reputable company be willing to host a website that is obviously stealing and spreading copyrighted content? Since my copyrighted material is not on their severs, but only links to their servers, Bluehost simply does not seem to care. Bluehost seems to be quite willing to offer its hosting services to an obvious copyright infringer.

Second, I have received very different responses from the search engines.

Bing: By far the best and most professional. After writing, I received a response from MSN DMCA agent the very next day asking me to clarify whether I was asking for the offending articles be removed from their search engine index. I wrote back to confirm that I was. They responded that their response time is 3 days. To my delight, they have all disappeared from Bing's search!!! GOOD JOB BING! GOOD JOB MSN!

Google: A week after writing to Google, no response at all except an auto generated email. Is anyone home? Does Google take copyright theft seriously? Hard to say.

Yahoo: Yahoo seems confused. First, they wrote me to tell me that none of the sites that had my copyrighted content was hosted on Yahoo servers. This is true. When I wrote back to ask if they could remove them from Yahoo search index, they wrote back and told me that my notice was incomplete. That was strange, because it was the same notice that I sent to MSN and they had no problem with it. I have sent a third message to Yahoo. Hopefully it will clear up the confusion. However, unlike Google at least Yahoo is responding and there is hope for progress.

Two messages to EBay, the source of revenue for the copyright thief have also resulted in disappointment. Confused Ebay customer service representative simply sent back a form letter about selling copyrighted products on Ebay, and how Ebay is not responsible for it. When I wrote back to clarify that I was not writing about copyrighted products but rather copyrighted content from one of their advertisers, I received another form response from Ebay concerning copyrighted products. Judging from the confused response, it appears that Ebay has little interest and no proceedure concerning copyright infringement.

My hat is off to MSN and Bing. They obviously take copyright abuse seriously and have a very professional procedure to deal with it. I wish it were so easy with all of the search engines and advertisers.

I am not sure how to protect myself from such copyright theft in the future. I have set up an alert for a sentence from each of my most important articles. My hope is that if someone copies it, I will learn about it immediately and hopefully be able to reach more quickly.

The sad thing is it seems that there is little to prevent thieves from stealing copyrighted content and claiming it as their own. If it happens, the only thing you can do is spend hours working to take it down. If the website's host is unwilling to lend a hand and the search engines are slow to respond, what will stop this copyright thief from simply stealing again?

Tuesday, January 26, 2010

Does CCSVI Hold the Key To MS?

Marc, at Wheelchair Kamikaze, has been blogging about Chronic Cerebrospinal Venous Insufficiency ( CCSVI ), the relatively new theory about the possible cause of MS.

I won't repeat the details which are elegantly discussed on the Wheelchair Kamikaze Blog, but briefly there is new evidence that the cause of MS may be linked to blocked blood vessels leading out of the brain. Many people with MS are now getting scanned to see if their vessels are blocked and if surgery might relieve some of their symptoms.

This is very exciting since, for the first time, there could be a magic bullet for MS. If follow-up studies prove this to be true, it will not be long until some medical mastermind comes up with a drug which specifically dialates the blood vessels coming out of the brain, or they come up with a way to implant a vasodilator in the right region of the brain. In the meantime, clinical trials are ongoing and the world is watching with anticipation.

Sunday, January 24, 2010

Am I The Only One Unaware of Lazy Legs The Disabled Breakdancer?

He calls himself "Lazy Legs" and he performed on "America's Got Talent" in 2007. His real name is Luca Patuelli and if you have not seen Luca Perform, watch this:

I just came across this talented guy recently and enjoyed Luca's Website. The guy does have talent and I admit to probably being one of the last to know about it. Better late than never.

Friday, January 22, 2010

Sri Lankan Disabled Soldiers Dance Swan Lake In Wheelchairs

Here are some beautiful photos of disabled Sri Lankan soldiers dancing Swan Lake in wheelchairs. One reason that performance is remarkable is that in many countries people with disabilties have few rights or opportunities. In some developing countries disabled people have little access to the rest of the world. Disabled people are sometimes locked away or left to resort to begging in order to survive.

An article from Mencafep Sri Lanka gives an idea of what it is like to be disabled in Sri Lanka:

"Some children are hidden away in family dwellings, sometimes in appalling conditions, that not even animals would be kept in. MENCAFEP is aware of cases that involve the death of severely disabled babies, soon after birth, being killed or abandoned and left to die. Within Sri Lankan culture families of disabled children, especially the mother and the child are seen to have done something wrong in a previous life. This ‘wrong doing’ is the cause of the disability; therefore in the traditional way of life sympathy and understanding are at times rare commodities within the Sri Lankan social order. In some cases families of disabled children can be ostracised from their communities."

In contrast to this mentality, the beautifully choragraphed perfomance showed in the photos seems remarkable. According to the CNN I-report which accompanied the photos, when it opened the cast and the show was smaller. But the reception was so positive, the performance has been growing.

It is not hard to understand why. Looks very beautiful. Hopefully these performances are more than just another cultural event for Sri Lanka.

Wheelchair Links: Resources For Wheelchair Users

I am trying to build up a link list of resources for wheelchair users. I already have a good start. I am calling it Wheelchair Links: Important Resources For Wheelchair Users. I would be willing to link exchange with other wheelchair or disability websites from the Wheelchair Link Site. If interested contact me at RehaDesign "AT"

Thursday, January 21, 2010

Jobs For Disabled People

If you are disabled and out of work, you are not alone. According to the US Bureau of Labor Statistics the unemployment rate for disabled people is an incredible 50% higher than for for able-bodied people. As the economy worsens and jobs get more and more scarce that figure is likely to increase. For this reason, we have created a new article:

No One Wants To Hire You? Consider These "Jobs For Disabled People".

The "Jobs for Disabled People" article was recently discussed amongst members of a well known disability community and was found to be very helpful. One commenter from the community said "My job is assisting individuals with physical and cognitive disabilities to find employment. You gave me some ideas I had not thought about."

I would also like to get comments from readers of this blog. Please review our article about jobs for disabled, and give your comments here.

Tuesday, January 19, 2010

A Preview of Dancing On Wheels

Below is a preview of Dancing on Wheels, the upcoming UK Wheelchair Dance Competition. This show looks VERY cool. However, if I had created the show, I would have selected famous able bodied celebrities (Paul McCartney, Sting, William Shatner, etc) to dance with professional wheelchair dancers. However, if I am reading correctly, neither the able bodied people, nor the disabled people have any real dance experince.

But "The winning couple will go on to represent the UK at the Wheelchair Dance Sport European Championships in Israel this autumn. "

DAMN!! I do not live in the can I watch this show?

Sunday, January 17, 2010

Around The World In A Wheelchair : Can You Help Andrew Shelley Fulfill His Sundance Dream?

In 2007 Drew (Andrew Shelley) with advanced Muscular Dystrophy and confined to a power wheelchair, decided to give up everything and backpack around the world. Two friends followed, documented Drew's journey and made a film "Beyond The Chair". Now, with health fading, Drew's dream is to have his documentary screened at the Sundance Film Festival which starts next week!!! See the Beyond The Chair Website for more about Drew's Dream.

The trailer looks pretty impressive to me. If you know someone, who knows someone at the Sundance Festival, perhaps you can help Drew fullfill his dream? If not, at least watch the trailer below and be amazed. Drew is one cool wheelchair user.

Friday, January 15, 2010

A Guide To Wheelchair Wheels

You probably do not think much about your wheelchair wheels. Wheelchair wheels simply get you where you want to go. You may not even know about all of the options available for wheelchair wheels. There are cool wheelchair wheels, high performance wheelchair wheels and assisted wheelchair wheels. Similarly the front wheels, or casters have similar options.

We have written an overview of wheelchair wheels called "A Guide To Wheelchair Wheels". The guide to wheelchair wheels briefly covers the available options for rear wheelchair wheels, wheelchair casters and wheelchair wheel accessories.

Thursday, January 14, 2010

New Jersey's Institutional Death Traps?

Some very prominent people are saying some very shocking things about New Jersey's Institutions for people with developmental disabilities. I wonder if anyone is listening?

Ethan B. Ellis, an Adjunct Professor at the UMD/NJ School of Public Health and former Executive of the NJ Developmental Disabilities Council, wrote a blog post about New Jersey’s Death Traps. Elis states that in two years "there had been more than 2,000 incidents reported that involved broken bones or lacerations requiring sutures at New Lisbon. With a few more than 500 residents at the time, that’s an average of four apiece" in just two years. In the last two months of 2009, there were two "unexpected deaths" and Ellis suspects "foul play" is involvd. Ellis is advocating closing New Jerseys seven developmental centers.

If Prof. Ellis' word is not enough for you, Ralph Boyd an assistant attorney general for the state of New Jersey, submitted a damning report about New Lisbon in 2002. Boyd reported amazing abuse by the New Lisbon Staff including taking residents home to clean up dog waste, smearing glue on a resident's face requiring painful removal after it dried and hitting and slapping of residents. Not only were the staff abusing the residents, but Boyd's team found they also abused work time. Boyd's team caught over half a dozen staff sleeping while on duty. Staff seened to be able to do what they wanted without fear of reprisal. Even in nine cases of dcoumented severe abuse when removal was recommended, it never occured. The strictest punishment handed out was a 10 day suspension.

Lest one thinks that New Lisbon is the only place where such abuse is occuring or that this abuse is a thing of the past, yet another assistant attorney general, Loretta King, documented severe abuse at the Ancora Psychiatric Hospital in August 2009.

To read about life on the inside of New Jersey's New Lisbon Institution, stop by Charles Carroll's Hard Candy Blog. Carroll was a resident of new Lisbon as a child in the 1950's.

There is some movement towards closing New Lisbon, which sounds like a step in the right direction. But the question remains....what about the other six New Jersey Developmental Centers?

Tuesday, January 12, 2010

A Special TV Series That Is A MUST See

The Specials
Did you ever have the following experience: You hear from someone that a movie or a TV show is very good, but you don't know why. You take a chance and see it, without knowing anything about it. And after it is over, you realize you have watched something very, very special? Well, without further ado, please take 10 minutes of your life and watch this video. Then, see the interview with the director below.

If you now love the Specials as much as I do, you will want to know more about who and what is behind it. Katy Lock is the director and the driving force behind The Specials. Katy was kind enough to do an interview for our blog.

Gene Emmer: To start please give everyone a summary of the Specials. What is it all about?
Katy Lock: Well 'The Specials' is a documentary series which follows the lives of Lucy, Lewis, Sam, Megan and Hilly, five friends in their 20s who have been sharing a house in Brighton for the past 2 years. Lewis has William's Syndrome and the others have Down's Syndrome and they have been friends since they were little kids. The guys provide the voiceover to the series and so, through 'The Specials', they are inviting the viewer to share their world.

GE: Can you please say a few words of introduction about each of the Specials.
KL: Hilly's parents Carol & Dafydd decided to set up the house when she told them she wanted to live with her friends. Hilly's a real girlie girl, she loves clothes, manicures and is always dancing to pop music. Sam's a complete Ladies Man! He used to go out with Lucy but through the series you follow his search for love. Lucy is the mother of the house, she is in a long term relationship with Nick and works 5 days a week (the others are still at college). As for Lewis, he's such a funny man! At the beginning of the series his girlfriend Megan moves in to the house but things soon get a bit complicated with Sam around.

GE: You describe the Specials as a docu-soap. According to Wikipedia a Soap is a "episodic work of dramatic fiction". So how much of The Specials is documentary and how much is fiction? Do the Specials have scripts?
KL: It's good you ask me this as the word “docu-soap” has confused a lot of people! In the UK, when we refer to a docu-soap, we mean a documentary series in which, over a long period of time you follow the 'goings on' in a real life situation. The “soap” part refers to the episodic nature of a series like this - but let me assure you 'The Specials' is not fiction! The guys are not actors but are real people who allowed me to enter their home and follow them with my handheld camera. I filmed them over a 6 month period and during that time I saw them have a lot of fun but also go through some very difficult emotional situations e.g. break ups, parental divorce. Over that time we built up a lot of trust and so, hopefully, you can see they trusted me enough to be really open.

GE: I understand that you tried to get TV networks to pick up the show. Why do you think that the series was not picked up by a TV network? Are you still trying?
KL: One of the major networks in the UK came very close to commissioning the series for prime-time but sadly it didn't work out in the end. I think the mainstream media does struggle to see shows about disability appealing to a large audience. When the pilot wasn't commissioned we all decided to make the series for the web because we wanted to prove that a show like this could have mainstream appeal. I hope people find 'The Specials' entertaining simply because the 5 housemates are wonderfully engaging individuals. Many people who previously didn't know someone with a learning disability have contacted us to say how surprised they were to see 'The Specials' go through all the same ups and downs as anyone else. That's exactly the reaction we want! 'The Specials' is not a show about about disability, it's about the shared human experience.

GE: Like many non-TV people, I imagine it must be expensive to create such a show.
How was the show financed? Is there any chance it will "break even". What are your most important sources of finance for the show?
KL: This show has been a real labour of love project – in other words, we had no funding whatsoever! Me and Dan had to raid our piggy banks but we really believed it was a series that needed to be made. With the DVD of Season 1 and the shop we hope to get together enough money to make a second series, however right now we are nowhere near raising enough, so I am also looking into other funding options. I've got all my fingers crossed as I really want 'The Specials' to continue. The guys are so fantastic to film and I really want to see what their future holds – it's bound to be fascinating!

GE: Thank you Katy.

You will be pleased to know that there are currently 10 episodes of The Specials available on the website.

Do you want to support the Specials? There are several ways to do so:

1. If you are in Europe, visit The Specials Zazzle Shop

2. If you are in the USA, visit The Specials Cafe Press Shop

3. Sign up to order the Specials DVD when it is available.

4. Help to spread the word about The Specials

Sunday, January 10, 2010

Don't Play Me, Pay Me Campaign

Finally, a few disabled people are demanding that disabled talent is used by program makers, on television, film and on the stage.

They have created a campaign called Don't Play Me Pay Me

I can not agree with this idea more. My only problem is that their focus seems to be on actors. I believe it should be all inclusive and be about any kind of performer or entertainer. Disabled people, like all people are in all aspect of entertainment and find barriers everywhere. For example there are disabled singers like the late Vic Chesnutt, and wheelchair dancers like Autie Angel.

Yet when Lady Gaga required a wheelchair dancer for a performance, what did she do? Lady Gaga used an able-bodied person instead of a talented and experienced REAL wheelchair dancer. Similarly the exucutives behind the TV Show Glee selected an able bodied person to play a wheelchair performer.

Why would they do this when there are so many talented wheelchair dancers in the world? Ignorance? Prejudice? Simple lack of understanding?

With that said, here are the objectives of Don't Play Me Pay Me:

* Actively encourage and support disabled people to follow their chosen creative career path.

* Remove the barriers of prejudice that disabled actors face in finding work.

* Provide a forum for all disabled actors to encourage debate and empower them to have their voice heard and listened to.

* Encourage programme makers to feature disabled actors in all storylines to reflect real life.

* Encourage programme makers not to use non-disabled actors (even if a “name” means funding) to portray disabled characters.

* Encourage advertisers to feature disabled people in all advertising.

I will be watching and following this campaign with interest!

Saturday, January 9, 2010

BBC Plans TV Competition Program For Wheelchair Dancing

Amazing! Will this catch on in the USA?

We all know that "Dancing With the Stars" is the US version of the hit UK TV series "Strictly Come Dancing". The dancing show was first popular in the UK and then it was brought over the Atlantic to the USA.

Now the UK TV Network BBC3 has announced that in its upcoming season of programs it will host a version of "Strictly Come Dancing" about wheelchair dancing! Very cool!

The new show is to be called "Dancing on Wheels". "Dancing on Wheels" will involve celebrities being paired with wheelchair users in a dance competition.

Hopefully Dancing on Wheels will show outside of the UK so the rest of us can watch. But what is the chance we will see a US version of Dancing on Wheels? German? French? Pretty small I would guess, but there is always hope.

Read more about the BBC3 Press release about Dancing On Wheels.

In case you have never seen wheelchair dancing, watch the talented wheelchair dancers in the video clip below:

Thursday, January 7, 2010

Coast To Coast by Greyhoud Bus in a Wheelchair?

Don't leave the driving to them!!!

A wheelchair user named Richard took a coast to coast (San Francisco, CA to Pittsburgh, PA) in his power wheelchair. Why? He felt that his wheelchair would survive the trip in a bus better than in an airplane. While the wheelchair did survive, it seems that Richard almost did not. His description of the abuse by the Greyhound personel is shocking. But in any case, I would not recommend any wheelchair user to take such a long term trip in a wheelchair. Greyhoud equals cheap travel period. The level of service is non-existant. Should it be that way? No, absolutely not and this kind of abuse is unacceptable.

Wednesday, January 6, 2010

A Video Montage By Auti Angel

This is a cool video montage by Auti Angel. Auti Angel is very talented, both as a wheelchair dancer and apparently as a videographer. This clip shows Auti before her injury and how she was inspired by other disabled artists and leaders to "Dance Anyway".

Well done Auti Angel!

I am still puzzled that Lady Gaga did not tap someone like Auti Angel for her recent tour. Why would Lady Gaga rather use an able bodied woman as a wheelchair dancer rather than a talented and experienced REAL wheelchair dancer like Auti Angel. If someone knows the answer to that, kindly let me know.

Saturday, January 2, 2010

The Sad Story Of Vic Chesnutt

Vic Chesnutt's story needs to be told. A quadriplegic since an injury as a youth, Vic was a talented singer. He recently completed tours in Europe and the USA. However, Vic's income was not sufficient to cover his medical costs. While Vic had medical insurance, somehow his coverage was not sufficient to cover the costs of surgery he required. As a result, Vic was sued by the hospital. Unable to cope with the stress of the law suit, Vic apparently took his life and died this past Christmas day.

Vic Chesnutt's sad story is a testiment to the need for some kind of health coverage for all Americans. It is a tragedy when life is lost. But it is a sin when someone must choose to have a medical treatment or not based on what they can or can not afford. No one should ever be forced to make this choice again. Read more about Vic Chessnut

See a Clip Of Vic Chesnut Singing Band Camp On The Late Show With Craig Kilborn

Friday, January 1, 2010

Gift Ideas For Wheelchair Users

This is coming a bit late for the holidays, but we put together a list of 10 Gift Ideas for Wheelchair Users. We tried to select different items for different types of wheelchair users, for example there is a gift idea for a child wheelchair user, another gift idea for a teen wheelchair user and yet another for an older wheelchair user and so on.