What Would Harry Do?

Wednesday, July 31st, was J.K Rowling’s (and Harry Potter’s) birthday. I think it is only fitting to let Ms. Rowling author this week’s Motivational Monday post.

We do not need magic to transform our world - JK Rowling

It is impossible to live without failing at something - JK Rowling

Greatest fear realized, rock bottom became a solid foundation on which I rebuilt my life - JK Rowling

It is our choices that show what we truly are - Albus Dumbledore


Starstruck: Wheelz

Aaron “Wheelz” Fotheringham is a 21 year old Extreme Wheelchairer.

Spinal bifida — a birth defect of the spinal cord — left Aaron in a chair but it did not get in the way of his dreams. A successful moto-cross athlete, Aaron does with his chair things others can only dream of doing on a bike.

Aaron can forever boasts the FIRST EVER double back-flip on a wheelchair, among his many accomplishments alone and those done with Nitro Circus (essentially a motocross “circus” crew of incredibly talented and brave athletes).

Concussions are temporary, backing down is permanent.- Aaron Fotheringham

Fotheringham wants to change the way people see wheelchairs. After seeing this, it will be hard to see a wheelchair the same ever again.

I present, the first wheelchair double back flip:

Miss You Can Do It

Last month’s coronation of Miss Iowa, Nicole Kelly, was very exciting as Kelly will be the first one-armed contestant for Miss USA.

Kelly, however, cannot claim the title of first disabled contestant on Miss USA. That title goes to Abbey Curran, the 2008 Miss Iowa.

Miss Iowa Abbey Curran at Miss USA

You read that right. I triple checked; they were both crowned in IOWA. There is something very special in the state of the wild rose.

Abbey Curran has a mild case of Cerebral Palsy and has some trouble with muscle coordination required for walking. A high-school teacher told Curran that she could not compete in beauty pageants because of her disability, and that was motivation enough to prove them wrong!

In her royal wake, Curran founded a non-profit which allows girls ages 5-25 to compete in a special pageant: Miss You Can Do It. This year marks the 10th annual pageant for disabled women built upon Curran’s belief that you can accomplish great things when you try.

And boy is Curran an example of that! She was told that disabled girls cannot participate in beauty pageants and she turned that idea on it’s head!

Miss You Can Do It - Big Dreams, Little Wishes, Major Triumphs

This incredible pageant and it’s beautiful founder are featured in an HBO documentary airing this summer. Here’s their summary:

Miss You Can Do It highlights the extraordinary work Curran is doing with the pageant she founded. Curran and a team of enthusiastic volunteers give participants a chance to be celebrated for all they are inside, not just defined by what the world sees on the outside. For one special weekend the young girls, along with family and friends, some who have traveled far distances, spend time in an oasis of fun, femininity and celebration.

No one leaves the pageant empty-handed, with each girl receiving a special award. The real winners of the pageant might be the families and friends, who proudly cheer them on from the audience.

Watch Abbey Curran’s interview with Ellen Degeneres to get a glimpse of how awesome she is and all things she touches. I introduce the original Miss You Can Do It!!

Starstruck: Tom Dempsey

If you haven’t heard of Tom Dempsey… Imagine a disability. Pick the one thing that should be the hardest to accomplish for a person with that disability. Watch them become the best in the world at it. Now you’ve heard of Tom Dempsey.

Tom Dempsey kickerTom Dempsey was born without fingers on his right hand or toes on his right foot. Surely this would be discouraging for an aspiring athlete. But it turns out that even with those disadvantages, he not only kicked for the NFL in the 70’s, he tore it up!!

Dempsey is probably most known for his 63-yard game winning field goal in 1970. In the past 42 years, no one has been able to beat this record! (To be fair, a few have matched it).

It seems like every successful disabled athlete out there has to endure criticism that their disability or their equipment gives them unfair advantages over their peers. As is the custom, Dempsey, too, endured this obligatory scrutiny.

Even though ESPN Sport Science found that Dempsey’s modified shoe gave him no advantage and likely a disadvantage, the NFL decided to add the “Tom Dempsey Rule”. It stated: “any shoe that is worn by a player with an artificial limb on his kicking leg must have a kicking surface that conforms to that of a normal kicking shoe”.

But kicking isn’t Dempsey’s true pride and passion. He loved hitting. He’d tackle anyone; he was absolutely fearless. Unfortunately, after 3 confirmed concussions, 66 year old Dempsey is now learning to deal with a new disability: dementia.

In January of this year, Dempsey shared his condition publicly. He met Dr. Amen (I can’t imagine a more trustworthy sounding name for a doctor. Dr. Amen: the answer to your prayers. Yeah, I just came up with that, no biggie 😛 ) who was doing a study on former football players with brain disorders. He described Dempsey’s condition as ‘an emergency’ upon seeing his brain scans. Dempsey has 3 holes in his brain and is now taking steps to slow down it’s progression.

What an inspiration–going after your dreams with brain-clobbering passion!

Read this great article featuring an interview with Dempsey and his wife about his career and his struggle with dementia. 

Starstruck: Elizabeth Taylor

While studying up for our previous Starstruck article on Mila Kunis’ eyes, I heard Natalie Portman give an interview on the topic. Portman–demonstrating once again that she’d rather be smart than famous–said “[Mila’s eyes] was incredibly beautiful. It was like an Elisabeth Taylor thing that she had.”

I was curious by what she meant with that comment and the world wide web parted for this surfer…

Elizabeth Taylor, in her infinite beauty had violet-blue eyes. It is an extremely rare color, often reserved for people with albinism. Whether this is what Portman was talking about, I’m not sure, because Taylor also had a genetic mutation of her eye lashes: she had an extra pair.

Elizabeth Taylor's eyes

When she was born, her doctor tactfully (*sarcasm*) told her parents that she had a genetic mutation. Any parent would be distraught over hearing this but when he finally explained that distichiasis means simply extra eyelahses, Taylor’s mom said “Well now, that doesn’t sound so terrible.”

Though distichiasis itself means extra eye lashes, it can come with other complications. It is not simply a cosmetic effect, though it is associated with ptosis (droopy lid) and strabismus (cross-eyed). The extra lashes tend to grow inward and damage the cornea. Further, there are associations with congenital heart defects, lymphodema (extreme swelling of extremities), and mandibulofacial dysostosis (facial deformity).

The only issue I could find regarding her distichiasis was when she was a young girl, acting in Lassie Come Home, she was sent back to hair and make up for having too much mascara on. She wasn’t wearing a drop.

Taylor was clearly blessed genetically, not just for her rare violet eyes, but for her mutatiously beautiful eye lashes. Her distichiasis  (in the public eye) was isolated and did not lead to any of these very serious outcomes. However, it is worth saying that Taylor was hospitalized over 70 times for various reasons (one of which was an ulcerated eye), almost died four times (by her count) and finally succumbed to congestive heart disease in March, 2011.

Just because Taylor did not share publically any health problems related to her distichiasis, doesn’t mean she didn’t face those struggles. Even the most famous and public of figures have secrets. So maybe she wasn’t as lucky with genetic roulette. I must admit though, she made a very beautiful mutant.

Starstruck: Jim Abbott

Jim Abbott is a world class pitcher. Pitching for the Olympic Team in 1988, he brought home Gold. In 1999 he ended his 10 season big league career; among his greatest achievements was pitching a no-hitter for the Yankees in 1993. Finally, in 2007 he was elected in the College Baseball Hall of Fame.

Jim Abbott was a great inspiration and an icon–as demonstrated by his guest appearance on Boy Meets World just after his no-hitter–for his amazing skills on the field. Even parents loved him for being a great role model and pursuing his education at Michigan University.

He did all this and all without his right hand!

Jim Abbott baseball

The really cool thing about that, to me, is that Abbott’s achievements were so visible. No one could argue that Abbott was any less talented than his able-bodied teammates. In fact, batters would try to exploit his disability by bunting the ball, but he was prepared and often got them out at first. I think this visibility was an opportunity for people to reconsider what disability means and what obstacles we let get in the way of our dreams.

Abbott is an exceptional player, and he got there because of his “little hand”. This may seem counter intuitive, but his little hand motivated him to prove he could do anything the other kids could do. To fit in.

When I was young my father put a baseball in my hand, and it made sense, and eventually it put me in a place where, maybe, I was a little less different. Baseball, to me, was validation.   -Imperfect

Abbot just released Imperfect: An Improbable Life detailing his life story. I’ve only read bits of it, but it is a unique account where you can get a glimpse of his internal struggles resulting from his birth defect. I really love this excerpt about when he goes to his 5 year old daughter’s career day and, in front of the entire class, asks “Dad, do you like your little hand?” There is no way to do justice to his response, so I won’t even try; read it here.

He took the hand he was dealt, and inspired a generation. Now that he’s put his story on paper, this baseball legend’s legacy will be how his triumphs transcend time and will have a lasting change in the world, for the better.

Ablevision: Tom Brady’s starstruck sneak attack

One of the most rewarding parts about writing this blog is being continually surprised.

The technological advances are always mind blowing. But I’ve accepted the fact that there are and will always be enough research/innovations to keep the world’s fastest reader occupied for a lifetime.

The thing I haven’t gotten used to is how people touched by disability are motivated to change the world for the better. I’ve barely been able to scratch the surface with what I’ve been able to cover so far: from making superhero capes for children with disabilities and dolls that disabled children can relate to, to taking initiative to make local activities accessible like boating, skiing, piloting, dancingmarathoning, and even safari-ing!! (There’s more, that’s just all I can list in only 5 breathes) Its incredible! And never ceases to amaze.

I came across Ablevision on YouTube today–a channel produced entirely by 45 crew members with mental and physical disabilities.

We seek to entertain and inform our viewers, and most importantly, we want everyone to know that we can do anything! Not only do we want to portray people with disabilities in a positive light, but also offer a unique program that allows people with disabilities creative control and direction. –YouTube profile

While the YouTube channel only posts clips of episodes (view entire episodes at www.ablevision.org), I have to admit I’m impressed! And you can even hire Ablevision to produce a professional video for your business 😉 😉 I had a lot of fun going through clips and learned a bunch about the disabled community in Boston, including the annual Best Buddies Football Challenge.

Best Buddies is an international nonprofit that pairs up individuals with intellectual and developmental disabilities with members of the community. Quarterback Tom Brady has been involved with Best Buddies for 10 years and played QB for both teams in the buddies touch-football game. Brady even took an interview with Abelvision (watch here) and you can see how passionate he is for the event and for his buddy.

Best Buddies has been stunningly influential in communities around the world, boasting that “Best Buddies volunteers annually contribute, at no cost to their communities, support services that equate to more than $168 million USD.” Holy smokes!

I know it’s not Saturday, but gosh darn it, I’m a little Starstruck for Tom Brady and for the Ablevision crew!!
Starstruck Saturday came early this week.

Tom Brady Best Buddies

Starstruck: Mila Kunis

If you are at all like me, you might assume that the glowing perfect faces of smiling A-list celebrities are indicative of an equally beautiful and perfect life. Look at the lovely Ms. Mila Kunis:

Mila Kunis - dichromatic eyes

If she doesn’t make your top 5 for most beautiful woman you’ve ever seen; you should see a doctor–you and Mila might have something in common. Mila Kunis has chronic iritis, or inflammation in her eye. It is responsible for her being blind in one eye for years.

When I think of Mila’s story–coming to the US at age 7, without knowing a word of English, with her parents and brother with only $250 to their names and then becoming a super talented international superstar–I think there is blockbuster-levels of excitement and drama; she didn’t need anything else to make her story more extraordinary. Yet she one-ups herself has this rare eye condition that makes her all the more amazing.

Though Mila had her blindness surgically corrected in 2010 (around the same time of her breakup with Macaulay Culkin, as numerous articles are quick to point out), she still has a lasting effect: two different colored eyes. As Natalie Portman so aptly puts it, “it was incredibly beautiful. It was like an Elisabeth Taylor thing that she had

Mila kept her condition a secret until after she had it corrected. At that point, no one would ever have to know but she chose to share her story and that too makes her even more awesome.

She sums up the experience like this: “I was blind in one eye for many years, and nobody knew…I’m not blind anymore. I had surgery a couple of months ago. They cut it open and dropped a new lens in there.”

We’re reaching dangerous levels of  awesomeness–this post needs to end before someone gets hurt.

Happy weekend!

Enabling disabled actors

We’ve talked a bit about the portrayal of disabilities on the silver screen, but what about in the movies?

It was recently pointed out to me that disabled characters are often the villains. Think Darth Vader, Captain Hook and the six fingered man in the Princess Bride. This messes with how the public perceives disabilities.

Strides are being made in this category, but many people wonder why disabled characters are often played by able-bodied actors. The obvious and overused comparison is that you no longer “black-up” actors. So why is it so accepted for disabled roles?

So for the sake of equal opportunity employment, and considering able-bodied actors are taking disabled roles….disabled actors should be cast for able-bodied roles.

When casting a part why assume that every part has to be played by a non-disabled actor? Why not consider giving a character a disability without worrying about integrating the disability into the script? Why not make sure that your extras sometimes include people with visible impairments?  —mediaanddisability.org

It actually makes a lot of sense and will impact our culture and perceptions of disabilities the way disabled villains are partially responsible for some bad reactions towards the disabled. Why should a disabled person follow a different script than an able-bodied person? They share a similar script every day, so why should it matter on screen?

I think a lot of the reservations towards casting disabled actors stems from Hollywood’s fear. In a city where careers are based on appearance, it’s scary to endure Hollywood when you are one accident away from losing everything.

Society fears disability because it is the only minority we could all become part of.  —backstage.com

I think it would be so cool to see a movie who’s protagonist has a disability but is never directly addressed in the movie.

Starstruck: Hugo Weaving

Today I’m Starstruck for one Mr. Hugo Weaving.

Matrix star, elf in Lord of the Rings, and man behind the mask of V for Vendetta…has epilepsy. Diagnosed at 13 with this neurological disorder, he experienced a seizure about once a year.

There are so many “invisible” disabilities like epilepsy, fibromyalgia, learning disabilities, dyspraxia, etc. Just because you can’t see a person’s disability at first glance, doesn’t mean they can hide it from you indefinitely. As someone with an invisible disability, it’s a nice feeling to see shock in someone’s face when I tell them I have Crohn’s. Though I rarely get that response, either because they are worried for me, don’t know what it is, or because I’ve let them see my struggle.

I think some people with invisible disabilities feel the obligation to hide it from others. Let me tell you, it’s exhausting!

Hugo is a pretty cool person because his diagnosis is shocking and he doesn’t hide his epilepsy! It’s a rare combination.

He completely down plays his condition. I think he only gave one (brief!) interview about his condition and appears in the clip below.

Having a seizure out of the blue with no warning, repeatedly, is both traumatic and also enough to make anyone distrust their own body. It is a big deal. Even though he has not had a seizure in 18 years, I’m sure he is taking medication prevent them and these drugs come with many serious side effects.

Hugo was unable to get a driver’s license as a teen because of his epilepsy, but since he has been seizure-free for so long he can get it now. He say’s he’d prefer to walk. So it seems to me that Hugo doesn’t dismiss his epilepsy like he appears to afterall!

Hugo’s pretty awesome because–the way I read his interview–he get’s the last laugh over his epilepsy. This is what I imagine:

Epilepsy: Hahaha, you can’t drive!
Hugo: Oh good, I really didn’t want to drive anyway. I really dodged a bullet there; thanks Epilepsy!

Everyone has their own “driver’s licence” to bear… 😉 I hope you get the last laugh!