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


One quote at a time

Staying motivated and positive is much more involved than “just do it”. It’s not something you can accomplish in a day; it’s something you have to accomplish every day. Some days it’s easy and others its near impossible.

As (the infamous) “they” say…There’s an App for that!

There are a load of apps that help you start your day right. They send you inspirational, motivational, spiritual, or otherwise quote every morning. And if you are having a particularly bad week, you can get several of those apps and receive messages all throughout the day.

I really like this app. (it’s free!)

Yesterday’s quote felt like it deserved to be in my fortune cookie! It’s so easy to get down on yourself and feel like your failing that it’s hard to see how far you’ve come!

Thomas Edison quote: Many of life's failures are experienced by people who did not realize how close they were to success when they gave up

These quotes really are quite good. I think I’ll have to start sharing them with the world on Twitter!

It’s an odd gift but it’s a gift

I started writing Controversy Humpday so I could share stories that I’d otherwise find very difficult to share, but that are extremely important and worth sharing! Today is particularly difficult; I hope every one feels they can chime in with their opinions in the comments and that these controversial stories can become somewhat cathartic.

Baby with Down Syndrome thrown from bridgeIn 2000,  mother dropped her baby, Kaya, from a bridge  45 meters in the air. After reading this, I was overwhelmed and probably too upset to write a coherent article. I realized I would never be able to find better words than this spectacularly gifted author, in her letter to the fallen baby:

Dear Baby Kaya,

When I read about your fall in the newspaper, my heart hurt. I know that the police are still trying to find out if your mother dropped you or if you were tossed over the guardrail.

But, in many ways it doesn’t matter. The fact is, as soon as people knew you had Down Syndrome, that changed the story. Now there was a reason for you to be thrown away: you are a baby who doesn’t really matter.

There are two things you need to learn. First, you come from a group of people who have a history of being thrown away. We have been thrown out of families into institutions. We have been thrown out of schools into special classes. We have been thrown out of lives of employment into lives of poverty. And people like you and me, doctors don’t really want us to be here in the first place. But we, people with disabilities, are glad you are here and welcome you to the fight.

And I, a woman with Down Syndrome, want to be the first to give you the second bit of news. Yes, you come from people who have a history of being thrown away, but you also come from a group of people who have learned how to survive.

I am a self advocate, that means that I have learned to speak up for myself and speak out against injustice. I take this seriously. There are some things that I learned that I want to pass along to you, things that I wish someone had told me when I was a little girl.

So, from me to you …

Be proud of who you are. Having Down Syndrome is kind of cool. I think we have beautiful eyes. Everyone tells me that we have the greatest smiles, and I think they are right. Being proud will help you in so many ways. It will insure that you ‘land softly’ every time someone treats you badly or calls you a name. You will hear them all, Retard, Reject, Dummy. I’ve heard them and really don’t care what people who use those words think. They may think I’m Retarded, but I know they are prejudiced.

Don’t listen to people who say you can’t do things. All sorts of people told me that I couldn’t learn. Guess what. I went to college, right along with typical students and I passed the same courses that they did. Oh, I had to sit up real late at night and study. I knew it was harder for me to learn, but I did it.

I can read. I can write. I can think. I can speak. There are more things that I can do than things I can’t. Just remember, don’t give up on yourself because someone says you can’t do something. Try it. You may surprise yourself.

I really hope this was all an accident and you will know a mother’s love like I have, but if not, there are lots of places where you an find love and acceptance. Find people who love you for who you are. Spend time with people who like you because of who you are. You will get tired from always having to teach people that you are a real person like everyone else. So find other people you can just have fun with.

I go to People First and other places where there are other people who have disabilities –you wouldn’t believe the fun we have and the things we get up to. In my groups I’ve met other people with disabilities who are married, who have full-time jobs, who own their own homes, who decide their own fates. It’s fun just to be part of the group. It’s a relief from being special.

Discover!! Life is fun and full of surprises. You know, I never kissed a guy until I was twenty!! But I discovered I liked it.

Life is full of great things, like first kisses and chocolate. Every day I sit down and enjoy strong coffee, real strong coffee, with milk and sugar. When I treat myself, I eat seedless grapes, cold and green.

You too, have lots to look forward to. I remember my first crush –on an older man. I remember playing races with my parents. I remember swings and slides and skipping and jumping. I remember playing with a puppy and rubbing his belly. Enjoy it all. Life is full of trials, but it’s also full of excitement, and fun, and green grapes and chocolate.

I read in the paper (that part still surprises people) that you are a ‘miracle baby,’ that maybe God caught you and carried you safely down from that bridge to the earth.

I believe, Kaya, that God gave me an extra chromosome. It’s an odd gift, but it’s a gift. I believe that God does love you. And, I hope you realize, so do I.

Welcome, dear baby, welcome.

Thank you Astra Milberg for finding the words no one else could and for giving baby Kaya the welcome and love she deserves.

Specially-abled pets

I’ve gotten a few complaints that Animal Week ended up not being as uplifting as they’d hoped. I understand, we are a tender-hearted folk and seeing such innocent and loving creatures suffering is hard. I find that animals’ dogged perseverance and chipper attitude and compassion should inspire us all.

National Specially-abled Pets DaySometimes they may need a little human intervention , or just our love. And that is what May 3rd celebrates: National Specially-abled Pets Day! (Notice it’s not National Disabled Pets Day). They have plenty more examples of how specially-abled pets are chasing their dreams.

handicappedpets.com beach shotAnd there are so many people more than happy to help them in that pursuit! For example, HandicappedPets helps people caring for elderly, injured or special needs pets and provides everything you could possibly need (including pet wheelchairs!).

HandicappedPets.com maked Walking Wheelchairs for all sorts of people of the animal persuasion, like Cris P. Bacon and Joshua the goat with bone disease:

Cris P. Bacon walkin wheels recipient

Joshua the goat with walkin wheels wheelchairSo…I don’t know. I think these specially-abled pets and the humans that love them are rather inspiring. There’s a lot of love there.

That said, if you would like to help pets with disabilities… Pets With Disabilities is a non-profit that rescues abandoned disabled pets and promots/facilitated disabled pet adoptions. Its pretty spectacular the lengths people go to for family.

Happy Monday friends!

Have a little faith: beating the odds

Faith was born in December of 2002 with only 3 legs. Her mother tried to smother the newborn puppy by laying on top of her.

Faith two legged puppy

Faith was rescued by a young man named Reuben. He and his mother took care of the puppy, but one of her legs was so severely deformed it had to be amputated.

With only two legs left, Faith struggled to learn to move about on her own. Veterinarians advised that she be euthanized because if she continued to drag herself the way she was, she would rub away the skin on her chest and chin.

But her adopted family had other plans. With much encouragement and some peanut buttery incentives, Faith learned to stand on two feet and walk! At first she would hop but then she taught herself to walk like her two-legged family members.

Faith the two legged dog, walking

Faith the two legged dog serves her country

Faith has recently retired from her career of helping, motivating and healing people. She made visits to veterans hospitals to see disabled soldiers. In this way Faith was able to serve her country just like her rescuer Reuben.

Faith the two legged dog all grown upShe is still an inspiration–10 years and going strong and touching lives!!

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: 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.

No bones? No problem.

I’ve been pretty excited to start talking about rare diseases. I thought Crohn’s Disease was rare, affecting about 1.4 million Americans. But it turns out, its not! A Rare Disease is defined as affecting fewer than 200,000 Americans.

Though that’s a very small amount of the population, there are about 6,800 rare diseases. And if you clump all those diseases together, you have 30 million Americans (or 1 in 10) that have a rare disease.

With so very many of those diseases out there, I wanted to start with a story of hope.

Janelly Martinez-Amador was born with a severe case of hypophosphatasia–a genetic disorder of the bones that prevents mineralization of the skeleton–and her bones didn’t even show up on x-rays. She had trouble breathing because of her underdeveloped ribs. Over time, she lost the ability to move on her own.

By age 2 and 8 months, her condition was so severe, she entered a clinical trial, even though it was meant for children at least 3 years old. The 10 other children started seeing improvements, but Janelly didn’t. Her scans didn’t change. Months went by.

Janelly’s family started to notice she was moving more but her doctors disreguarded them as hopeful parents because still her scans didn’t improve. It seems the doctor started to think the clinical was a failure because her disease was too severe and Janelly had too little for the medicine to act on. But evidently there was still enough bone left and the medicine (an enzyme called asfotase alfa) and Janelly has drastically improved.

All the other children in the study were getting better and Janelly wasn’t. It was disheartening but they waited so long and saw hope in the face of failure… Now, for the first time in her life, Janelly’s bones are growing! She breaths on her own and even dances!

Moral of the story? Don’t give up until the fat lady’s sung, gone home, taken a bath, and is soundly snoring.

Am I disabled?

In my last post I did something a little controversial. I suggested Halle Berry was disabled. I did this intentionally to see your response and to make you question what exactly “disability” means.

When I first started this blog in January, I thought “disability” meant amputees, spinal cord injuries or other mobile-challenged individuals, blind and deaf people (I’m a scientist so we’ll call this Hypothesis 1). But something personal and unexpected happened that completely altered my way of thinking. I haven’t spoken to anyone about it before . So Mom, Dad, listen up. 😉

As you know, I have Crohn’s Disease. I lived with it for upwards of ten years before being diagnosed, and I never once thought I was disabled.

For those of you who don’t know what Crohn’s is, it’s an autoimmune disorder of your digestive tract. In terms of symptoms: imagine your worst case of food poisoning. Any and all of those symptoms are fair game, 24 hours a day, every day of your life.

I went to college and my first semester: I never felt worse in my life. I had absolutely no social life, no friends, and I sat in the back of all my classes hoping the professors didn’t notice me crying silently in pain. Still I didn’t see myself as disabled. I sacrificed eating entirely just to make it through finals. (And I’m Italian. You don’t want to get between me and my food! That’s how buckets get kicked)

After surviging college, my view of myself changed. We all strive to be productive members of society and the community and I began to see all the things I couldn’t do.  I felt like I couldn’t do anything. For example, I dread long drives and traffic—imagine drinking water from Mexico before your commute every day and you might begin to understand my fear. So on top of the pain–that anyone who’s encountered the disease will call debilitating—I also had this debilitating fear. And to me, it’s completely rational.

Trying to better equip myself for the working world, I read an article titled something along the lines of “The Workplace and Crohn’s”. Very original. But what it said is that disability laws dictate that an employer must accommodate your needs so long as they are reasonable, and it suggested requesting a desk near the bathroom.

That was the first time I was called disabled.

Sure it was by an article, authored by someone who didn’t even know me. But after the shock, I began to realize it was right: I am disabled. It has less to do with what I’m physically able to do, because I can go up a flight of stairs like a ninja. But some days, I can barely get out of bed. This didn’t fit my original definition of disability, so maybe it was wrong.

I put those thoughts aside while writing this blog these past months. I wanted to gear it towards people with disabilities, to empower people, to give them the information they needed to travel and experience the world. But that felt too limiting because I wanted to help other people like me and I wasn’t sure if they belonged in that category. And then I finally figured it out (or so I thought): EVERYONE is disabled (Hypothesis 2). Hear me out: some people physically can’t get around or navigate their environment alone, but some people are disabled by fear, past experiences, relationships, responsibilities, mental and psychological conditions, their current situation, etc. Whatever baggage you carry, whether physical, emotional, or mental, that is what is limiting you, disabling you.

But I had an issue with this theory, too. The stories and blogs I’ve read and the people I met at the Abilities Expo—they all had a physical disability in the traditional sense of the word, but they accomplish way more than just about any able bodied person I know! Their disabilities might as well be an afterthought or a forgotten footnote, because describing them as disabled just doesn’t feel right. Just look through our weekly Starstruck series!

So what does that mean? No one is disabled??? Hypothesis 3.

FINALLY, I think I figured it out! Let me ask you the same 3 questions from my last post, about where do you draw the line between disabled and not-disabled:

  1.  Is a stubbed toe a disability? – How about a broken toe? A deformed toe? A limp? A missing toe? Two missing toes? Does it matter if that person’s job is a dancer? Well check out Team Hot Wheelz, a group of wheelchair dancers, working the crowd; are they disablied?
  2. How about carpel tunnel syndrome?  — Talk about the most boring work-related injury. But if it’s so severe that you can’t type for your job, is it a disability? Is it a disability if typing isn’t part of your job description?? What about Jessica Cox—she has no arms but she can type. Is she disabled?
  3. Or a good old fashioned zit? – Is a zit a disability on a supermodel? Debbie van der Putten is a successful model but she doesn’t have a right arm; is she disabled? How about a skin tumor? What about this man (warning: graphic images) who has neurofibromatosis and every inch of his body is covered in tumors. He can run, jump, see, hear…but he can’t go out in public.

My point is our physical abilities are on a sliding scale. We have no system or definition in place to differentiate at what point you qualify as disabled. And my second point (I have two) is that some people traditionally considered “disabled” are accomplishing more than ever before, and more than their “able-bodied” peers. They don’t think of themselves as disabled, and they aren’t. They are differently abled. I am able to write with my right hand; my dad is able to write with his left. We are differently abled but equally abled.

So, the truth is the difference between “able-bodied” and “disabled” is not nearly as important as the difference between an abled spirit and a disabled spirit. I think the later is the true definition of disability.

Hypothesis 3—disability refers to a person’s spirit as least as much as, if not more than, to that person’s body—is my going theory. There are too many people who have inspired this new outlook of mine to properly give them all credit, but there is one person in particular who I must acknowledge: Aimee Mullins. Her TED talk, below, was just the Aha! Moment I needed to put together my personal going theory. I really, really strongly recommend you watch this video.

Like I told the brave soul who told me they thought I was wrong to call Halle disabled, “disabled” people are showing just what they are capable of and are challenging what it means to be disabled. It is through challenging these beliefs and perceptions that people like me have had to change their definition of disability.

Please join the conversation and leave a comment. If you think I’m wrong, please explain it to me. I’ve been excited all weekend just to hear your thoughts on this so comment, share, ask others what they think. I think this is such an important question and there is no good, concrete  definition out there. It’s up to US to define it, and we do that together. So…what does disability mean to you?