If your household is anything like mine, it’s a holiday tradition to watch some of the classic specials such as “Santa Claus is Coming to Town,” “The Grinch Who Stole Christmas” and good ‘ole “Frosty the Snowman”; all timeless and ageless “must-sees” for the yuletide season.

The one that resonates the most with me is the story of “Rudolph the Red-Nosed Reindeer.” Adapted from a song, the story is about a reindeer named Rudolph, who has a unique characteristic. He has a shiny nose. This meant that he was different and unlike all of the other reindeer, who, by the way, chose to laugh and call him names. Rudolph’s own parents viewed his difference as a flaw and tried to cover up the unique characteristic about their son. When your own parents are embarrassed or not accepting of you, that really hurts.

The one person who did accept his difference was a cute reindeer named Clarice; however, her support was quickly silenced by her father, who also wanted nothing to do with Rudolph.

Rejected by his friends, coach and parents, Rudolph decides to run away from home. He is joined by Hermey, an elf who also deviates from what is expected of him. Instead of wanting to work as a toymaker, Hermey wants to be a dentist. Rather than be supported to reach his dreams, he too was shunned.

As Rudolph and Hermey go along their journey, they find themselves in the Island of Misfit Toys, where unconventional toys go when they are rejected by their owners; unwanted because of their variance from a normal or typical toy.

After a long expedition, Rudolph and his friends decide to return to the North Pole. There he learns that his parents and Clarice are off looking for him. He also finds a troubled Santa who is about to cancel Christmas because the weather is too bad for him to take the sleigh out. As he begins his announcement, he suddenly notices Rudolph’s red nose.  Santa’s “aha” moment! Rather than be viewed as a flaw or inadequacy, his nose provides the means that saves Christmas Day.

“Wow,” I say.

The point I am trying to make is that there is deeper meaning in the story of Rudolph. As a parent who had a son with multiple disabilities, I can certainly relate to the inability of others to recognize what my son had to offer. He wasn’t included in the school play, yet he had a smile that could light up a room. I have heard countless stories from parents who work tirelessly to convince others that their son or daughter has the ability to work, learn and play with everyone else.

Each of us has unique qualities, diverse strengths and assorted interests. I hope that the story of Rudolph inspires people to embrace the diversity in all of us and that we find a way to make sure that no one is shunned or excluded from anything. It is what is different in us that can make a difference for others.

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Lead photo courtesy of YouTube: Dino Disco


It was a rainy, dull and boring lunch break at school, and I was in a tutor room but not my usual tutor room. Rain meant we weren’t allowed to burn off energy outside (more than likely due to “health and safety”), so everyone had to remain inside within their tutor rooms. I don’t remember why I’d been moved, but it was more than likely due to attempting target practice with a paper airplane and a waste bin… as you do. Anyway, I was in a different tutor room… but I knew for sure these kids were not all in my year.

I didn’t know half of them, and they didn’t know me so I decided to keep my head down and instead, engross myself within a Jacqueline Wilson book at the back left hand corner of the classroom. A girl I didn’t know came and sat next to me, introduced herself and commented about how she enjoyed reading Jacqueline Wilson books… we got talking about all things Tracy Beaker and had found a connection within that. Deep in conversation, I one of the boys, who must have been watching us in conversation for whatever reason, suddenly shouted to me “Why are your teeth so yellow? Don’t you know what a toothbrush is?” The
classroom erupted with laughter. It was obvious he was the class clown, but he sure wasn’t making me laugh.

I sat there, frozen in my space. I remember scanning the room, people were staring at me, laughing with each other while this guy was getting high fives from his crew. The frozen feeling gradually turned into sheer anger and embarrassment. My new friend sat quietly, seemingly embarrassed too. I could feel my cheeks burning and my clammy fists tighten as I got more upset. The door seemed so far away, but I needed to get out of there before I did something I’d regret…

Head down, I pushed the chairs out of the way, even threw one across the classroom (into an empty space may I add), maneuvered my wheelchair into the right position, which allowed me to pull open the door and slam it shut. I could still hear the laughter from the corridor. Moving away from the situation was the best decision I could of made. Getting to the bathroom, I locked myself in a cubicle and sobbed and sobbed until there were no physical tears left. My fists were red from punching the wall in anger. “Do people really think my teeth are yellow?  Why can’t I just be normal in some way, shape or form?” This incident wasn’t the first or the last.

I wasn’t a particularly naughty or violent child at school, but as a result of constant neuropathic pain, wheeling around and teenage hormones, I struggled to contain my anger. I already felt different because, at that time, I was the only wheelchair user within the mainstream establishment. Bullying was a regular occurrence inside and sometimes outside of school just for being supposedly “different.” Now, in addition to the chair, people were noticing my teeth. Again, the color of my teeth wasn’t and still isn’t something I have full control over. I had chemotherapy as a baby when I had cancer, and subsequently, the chemo stripped my teeth of the white enamel. As a result, the color of my teeth do not remain stereotypically white no matter how many times I brush them, what foods I eat and what toothpaste I use (if you don’t believe me, just ask your dentist!).

With this in mind, I started taking a toothbrush and toothpaste with me everywhere I went because I truly believed this was one possible way of getting the desired look of having white teeth. I had this element of control. No one would know I would be brushing my teeth maybe six or seven times a day because I’d be in a disabled cubicle while the helpers waited outside. Maybe, I thought, if I had white teeth the name calling, verbal abuse and anxiety would surely stop…

But as an adult, an incident like this gets you thinking. Why did that child even say that? We all know children are very honest, sometimes too honest. We also know mean streaks do ooze out of people, and bullies exist. But why should we have to attempt to conform to the norms and ideologies that society pushes us to strive towards? Why should we have to worry about pleasing other people and at the same time, displeasing ourselves and making ourselves sad? Why do we have to have the “whitest” teeth, “prettiest” face, and “hottest” body to be classed as beautiful and unique? Surely we are made this way for a reason? Whether we believe that reason is because there is a God that wants us to walk a certain path or whether we were made and placed on this earth to make a difference, we have to embrace what we’ve got, not what we haven’t got. You can’t always be wishing and wondering “what if I had this?” or “what if I had that?” (we all do it!) because you’ll never look forward and
always remain looking backwards.

Unless you can make a change and want to make a change for you and no one else, embrace yourself and love yourself. Don’t ever change yourself just to please another person.

Even as a 23-year-old, I still carry a toothbrush and toothpaste with me everywhere I go (even my friends don’t know this) so maybe that incident and others relating to it have actually affected me more than I realize, but at least I know that as long as I look after myself, keep as strong as possible and enjoy life, I can be the best version of me to please myself and myself only. You can’t always control what you’re given, but you can attempt to make the best of it. If someone can’t accept that, so what? There’s the door. Ba-bye.

*slowly wave as you leave so they know you aren’t bothered*

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Thinkstock photo by lisafx

Today is Disability Awareness Day. The fact that I have autism, OCD, major depression, and anxiety compels me to say something about having a disability. Still, I have no idea how to talk about having a disability without feeling like I’m stacking the deck against myself.

How do you talk about having a disability when the very term “disability” implies something that makes you lesser? The prefix dis- means “lack of,” or “not.” And it’s not like there’s some other word that avoids it. I believe “differently-abled” is condescending, and “special needs” falls into the same trap of “disability” by implying something alien, as though a disabled person does not have the same basic needs: food, water, shelter, and compassion.

I feel as though the language we use to talk about disability is rigged against us. It unavoidably dehumanizes us, because we cannot talk about “disabled” without reference to the “abled,” the “normal.” And since disability is typically implied to be permanent, the language informs me that I am permanently separated from what is normal. That I can never be like everybody else.

But then none of us can be like everybody else. We’re all ensconced in our individual skulls, our unique minds and unique perspectives. And just as much as I am disabled from being like everybody else, so is everybody else disabled from being like me. I do not know what it’s like to not have autism. But then, others do not know what it is like to have my autism. I do not know what it’s like to be able to interact naturally and un-self-consciously, but others do not know what it’s like to experience music the way I do, to hear the sounds of instruments dividing and subdividing into unique universes of soundlets, all separate yet simultaneously coalescing together into a larger whole, and then seeing those sounds turn to images in one’s mind. Those without depression may not know the depths of pain other people can feel.

None of this is to say that any disability is inherently “good.” I don’t want to have depression, and I take active steps to work out of it. Rather, what we call “disabilities” are what we choose to make of them. And it doesn’t matter if we choose to accept our disabilities and celebrate them, or rebel and agitate against them: both choices are valid. Because at a fundamental level, what makes something a disability is dependent on nobody else but the person who has it. At the core of me, at the basic essence of who I am, there is no “abled” or “disabled.” There is only me. The only person I have ever been at this moment. And at this moment, I do not have autism, or OCD, or depression or anxiety. I have only me, my life, and my experiences. Before I relate to anything else in the world, I relate to that. And I decide what it means.

None of this is to say that we should do away with “disability” and terms like it in favor of some sweeping “we’re all the same” generalizations. Language matters, and however imprecise and problematic such a term as “disability” may be, it’s nonetheless useful for identifying issues and conflicts that can be resolved through political action or science or medicine. But it would do us well to realize that the language we use to talk about disability, like all language, is ephemeral. What it’s describing does not exist. It’s a simplification – and thus a distortion – we use to serve our own ends, or the ends of others.

Instead, I believe we need to think about the ways in which we entrap ourselves within the whims of a society that purports to judge our bodies and our lives without our consent. The ways we have confused society’s opinions for our own internal monologues. And to be cognizant that when we use terms like “disability,” we are using a term that may be useful, but does not actually exist — except insofar as we and society allow it to.

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Many years ago, in the days before my chronic health issues began, exercise and sports were a regular, much-enjoyed part of my life.  There was nothing quite like racing down a field with a soccer ball at my feet, or clambering into a freezing lake with water skis strapped on, or standing at the top of a mountain I’d just hiked, looking out at what felt like the entire, beautiful world.

When health issues put an end to those sports I most loved, I still found a way to be active through long walks beside the little creek a few blocks from my home. It wasn’t the same, and I always felt the loss of the sports I loved, but at the same time, there was nothing quite like a jaunt through nature to get my heart pumping and set my world right. Many a night, after a hard stressful day, I’d slip on my sneakers and head down the front stairs, allowing the crisp Canadian air to fill my lungs and calm my soul as I walked around my neighborhood.

Then, suddenly, 11 months ago, I lost the ability to walk independently and had to accept a wheelchair into my life. (After several months, I’m at the point where I can use a walker inside my home now and a wheelchair elsewhere.) Gone were the long walks I loved so much; it created a cavernous hole in my life and heart.

After some moping, I decided enough was enough. Exercise has always been important to me, and if I had to be creative in how I exercised, so be it. The first thing I did was search the internet for ideas, but to my surprise it was hard to find ideas that worked for my specific situation. Many websites recommended exercises that were too intense for me. One showed a video of veteran soldiers doing heavy weightlifting in a gym and swinging on trapeze bars. Many others recommended playing wheelchair basketball, which I assume requires the ability to self-propel one’s wheelchair and handle fast wheelchair movements, both of which I cannot do. Other websites suggested going to a pool, but at this point in my life I am unable to drive on my own or to get my wheelchair out of my house without a strong adult taking me out, so that too was nixed.

Having been a physical therapist many years ago, I decided the best course of action would be to creatively design exercises that worked for my situation and my body. After a bit of trial and error, I came up with several exercises I love to do, all of which I do safely in a supported sitting position. A big key for me has been to listen to the messages my body sends me. My personality likes to push beyond my limits, but that not only leaves me discouraged, it risks injury. By working at my own pace, I am acting lovingly towards my body.

I thought I’d share some of my ideas here on The Mighty for others looking for exercise suggestions and tips.

Please note: always ask your physician or physical therapist prior to beginning any exercise program, and never push beyond what you can safely do for any exercises.

1. Dancing to music. I get my body supported in the way it needs to be comfortable, crank up the tunes (I recently discovered early rock-and-roll greats such as Buddy Holly and Ritchie Valens, which have a good beat) and start flailing my good leg, swinging my arms, and moving my back to the music. As an added benefit, the songs get stuck in my head, bringing a smile to my face throughout the day.

2. Exercise resistance bands.  I ordered a few stretchy bands off the internet and it is amazing how versatile they are, allowing me to exercise everything from my toe muscles all the way up to my shoulders (and lots in between.) They allow me to work at my own pace.

3. Ball bouncing/ kicking. Bouncing the ball beside you is a good way to work on coordination. However, after a few times of the ball bouncing away on me, I discovered this exercise works best in a confined space.

4. Arm cycle. This piece of equipment is like a bicycle for the arms and sits on my dining room table. It allows some valuable cardio activity that gets my heart rate up.

5. Taekwondo punching: My son takes taekwondo lessons through a local special needs program, and I’ve had him show me the proper form for punching forward into the air. Several of these in a row can get my heart working! They also make me feel a little bit powerful, which is something that went by the wayside during all my years of physical health issues and disabilities.

6. Range of motion with or without light weights.  When I first began exercising, my arms only had the strength to lift themselves through their range of motion (i.e. shoulders going in circles, elbows bending up and down.) After a few weeks, I was strong enough to begin with small 1 pound dumbbell weights. Every month or two I’ve been able to increase to a heavier weight, and now on good days I can use 3 or 4 pound weights.

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Ask a superintendent about parental engagement, and you will likely hear sincere optimism about the role, responsibility, and commitment to open, transparent, two-way communication. Ask a superintendent about the experiences they envision, expect and desire for each student, and you will probably hear much of the same. However, when pressed to be specific about students with special needs, the answers might seem, well, less certain or hopeful.

Please don’t misread this as disparaging towards educators; it is not meant to be. Rather, it is from personal experience as a superintendent that I felt, in many cases, inadequate and unprepared to provide a thoughtful, informed response that didn’t come across as trite or pithy.

It’s not that I didn’t care or consider each of our students as important, valued and certainly worthy of our very best — day in and day out. It was more a matter of not knowing what I didn’t know. In my 35 years of public service and less than three in the private sector, my awareness, understanding and knowledge of what our students with disabilities experience became better informed through open communication. To that end, I offer insight into the parent-teacher relationships I hope special needs families can experience while in our care.

1. Allies, not adversaries.

For parents of students with disabilities and their educators, I believe it is extremely important for advocacy to create allies, not adversaries. This mindset must be first and foremost in each interaction between educators and parents or learner guardians.

Alliances can balance strengths and weaknesses or, possibly better put, assets and deficits. Parents bring a unique and profound knowledge about their child, whereas educators possess a unique and profound knowledge about teaching and learning. In an alliance, there is an inherent need, commitment and obligation to transparency, grounded in constant and consistent communication.

A parent’s knowledge about their child is instrumental to equipping our educators with the information they need to meet the unique needs of each student.

There are two steps I believe should be taken to effectively transfer knowledge from parents to educators: 1) Educators must seek first to understand before being understood by the parent, and 2) They must hear each question from the parent as if hearing it for the very first time, regardless of how many times it may have been asked before.

2. Share experiences — ask (and answer) questions.

While each individual student is equally important, educators work with several students in a given day. As my experience validated, the most conscientious, caring and committed educator may not always have the same information or experience with your child that you would like them to have.

Questions are our friends, and questions can help us clarify our thinking. Whether educators ask or not, I believe parents should always offer an answer to this: “Tell me something about your daughter/son that will help me better meet her/his learning needs.”

3. Building dreams, together.

I want to affirm that the highest aspirations and biggest dreams parents have for their children are important to us. Educators can often see the possibilities, the potentials, and sometimes certain realities that many parents know in their heart of hearts, but that may be challenging to acknowledge. I hope parents can trust educators to bring out the best in their children while they learn and grow within the classroom environment.

The aspirations that parents have for their children with disabilities must not be discounted, discouraged, or dismissed. In my experience, educators are often optimistic and hopeful of improvement. To that end, I hope parents can share a sense of growth and improvement towards their children’s goals in the classroom, as well as the dreams their children have for their futures.

I am confident and remain steadfast that parents and educators as allies can create an enduring partnership, leading to a greater sense of trust, transparency and progress towards meeting or exceeding the expectations and needs of each student.

Image via Thinkstock.

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As Hollywood came together to celebrate people with disabilities, media creators recognized the importance of accurate representation of the largest minority in the U.S.

Scott Silveri’s new hit show on ABC, “Speechless,” which features a young man with cerebral palsy (Micah Fowler), won three awards including two for Silveri (Writers Guild of America West Evan Somers Memorial Award and SAG-AFTRA Disability Awareness Award along with director/producer Jake Kasdan and producer Melvin Mar.)

Danny Woodburn (Photo Credit: Michael Hansel)
Danny Woodburn (Photo Credit: Michael Hansel)

The honors were presented at the Media Access Awards, an event promoting disability and its depictions in film, television, and new media. In attendance were key entertainment leaders with ties to disabilities. It was emceed by actor/comedian Danny Woodburn who also was awarded the Norman Lear – Geri Jewell Lifetime Achievement Award for both his acting career and his disability advocacy work.

Casting Director Susie Farris, who cast Fowler, was awarded with the Casting Society of America Award. She spoke about the importance of Fowler’s character not being an inspiration. “Speechless” now reaches seven million people.

Silveri, who grew up in a family with a brother who has cerebral palsy, talked about not even thinking about including people with disabilities in his work for many years. When he came up with the idea of “Speechless,” he said he found networks willing and interested. Silveri thanked disability advocates who have been working for years to open the doors for him. “If we’re going to be storytellers,” Silveri said, “then we have to include disability.”

Speaking of “white able-bodied male jerks” who write for Hollywood, Silveri said many don’t get the importance of inclusion of people with disabilities, but they are not trying to be wrong.

A&E’s Drew Tappon & Born This Way Executive Producer Jonathan Murray (Photo Credit: Michael Hansel)
A&E’s Drew Tappon & Born This Way Executive Producer Jonathan Murray (Photo Credit: Michael Hansel)

Another major winner was creator and executive producer of A&E Networks’ “Born This Way”  Jonathan Murray, who said people with disabilities “have been placed on the sidelines and the margins of primetime television. With ‘Born This Way’ airing on A&E, that is no longer the case.” His newest show, Emmy-winning “Born This Way,” features seven individuals with Down syndrome. During its first season, the show increased its viewership by more than 80 percent, which Murray says proves that making shows featuring people with disabilities “is not only the right thing to do, it’s also good business.”

Awarded with the Producers Guild of America George Sunga Award, Murray has been promoting the
importance of including all minorities in his various television series such as “The Real World,” “The Challenge” and “Project Runway.”

The Media Access Awards aim to recognize depictions of disability that are accurate, inclusive and multi-faceted. The ceremony honors industry professionals who have advanced disability-related narrative in fields including writing, producing, casting, performance and directing.

Speechless’ Cedric Yarbrough, Scott Silveri, Melvin Mar and Micah Fowler (Photo Credit: Michael Hansel)
Speechless’ Cedric Yarbrough, Scott Silveri, Melvin Mar and Micah Fowler (Photo Credit: Michael Hansel)

By promoting success stories of people with disabilities, both “Speechless” and “Born This Way” help to change negative perceptions of people with disabilities, especially among employers.

“Each year 300,000 young people with disabilities reach the age to enter the workforce,” Murray said. “However, despite polls showing that most of these young people want to work, they often hit a roadblock because of negative stigmas. So it is wonderful that views of “Born This Way” see young adults in our series contributing to their workplaces, and, in one case, starting her own business. It is also wonderful that our viewers see our cast as individuals, each with distinct personalities and dreams.”

Media Access Awards Chairs Deborah Calla and Allen Rucker (Photo Credit: Lauren Appelbaum)
Media Access Awards Chairs Deborah Calla and Allen Rucker (Photo Credit: Lauren Appelbaum)

Deborah Calla and Allen Rucker chaired the awards ceremony. Co-chairs included Ray Bradford, Pam Dixon, Jenni Gold, Sam Maddox, Paul Miller, Adam Moore, Kim Myers and George Sunga. Other winners included actress Jamie Brewer (SAG-AFTRA Harold Russell Award), who has Down syndrome, and MacGregor Arney (Christopher & Dana Reeve Foundation Scholarship,) an upcoming young actor with cerebral palsy.

Zach Weinstein, who presented Arney with his award, summed up one purpose of the awards ceremony. Talking about his 13-day-old son, he said he is happy to known he will grow up
in a world “where disability is going to be normalized.”

Learn more at RespectAbility.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.