Flying Solo

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Digby Webster and Tracie Sammut have made waves in the art and TV world – but successes aside, both face an uncertain future.

Digby Webster, a widely exhibited visual artist, was born with a genetic disorder known as Down Syndrome. Tracie Sammut, an actress who has been featured in classic Australian TV shows such as Home & Away and GP, and received a prestigious Logie Award for Special Achievement in 1993, shares this disability.

Digby, 30, and Tracie, 39, still live at home in the care of their families, who are anxiously watching as they take their first tentative steps towards independence.

Flying Solo follows Digby, Tracie and their friend Tom, 36, over the course of four years as they pursue their new lives, juggling their passions with new responsibilities.

Digby tackles fundamental skills such as money management and cooking, even undertaking a new job as he prepares for his newest exhibition. Meanwhile Tracie decides to take Tom under her wing and train him as an actor. But for Tom – now living on his own – pursuing his dreams of professional acting proves an uphill battle as he finds himself struggling with time-management, household chores and depression.

The trio's journey is chronicled in Flying Solo, a feature documentary directed by Australian-American filmmaker Ehsan Knopf, which premiered online on March 21, 2018, World Down Syndrome Day.

The film, made in close collaboration with its subjects, captures their hopes and the hurdles they – like many people with intellectual disabilities – hit along the way. It features frank discussions about disability by the subjects and their friends and families, as well as inspirational scenes of mentorship and friendship.

A social impact documentary, Flying Solo pulls back the curtain on the unexpected strengths of disability, revealing the unique contributions people with conditions like Down Syndrome can make to society. It also aims to inspire change around a chronic lack of access to supported accommodation, which maximizes independence for people with disabilities.

“People with disabilities need to be heard,” Digby Webster said. “I hope the film will show people a different kind of world and also help to create a more open and inclusive community.”

Flying Solo, which first began as a student short film in 2013, was inspired by the filmmaker’s discovery, as an adult, that he himself had a disability. Filmmaker Ehsan was 26 when he got the life-changing diagnosis of Asperger’s Syndrome, a form of autism. A year later, a friend showed him Digby’s artwork, prompting him to get in touch with the artist and make a film about his journey.

After meeting Tom and Tracie, Ehsan expanded the scope of the documentary to include their stories as well, encouraging Tracie and Tom to work together. The result was a series of acting workshops featured throughout the film.

Flying Solo can be watched online on Vimeo On Demand.

History Made

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On June 9th, 2019, Different & Able contributor Ali Stroker made history as the first performer in a wheelchair to receive a Tony Award for her role as Ado Annie in this year's Broadway revival of Rogers and Hammerstein's Oklahoma!  

At the young age of two Ali was involved in a car accident and as a result was left paralyzed from the chest down. As a child, Ali felt frustrated that her identity revolved around her disability. Becoming a performer offered her a new identity of which she was in control. She started performing professionally at age eleven. Stroker attended Ridgewood High School, where she was senior class president and starred in a number of school musicals. She trained with the Summer Musical Theater Conservatory program at the Paper Mill Playhouse in Millburn, New Jersey. In 2009 she graduated with a degree in Fine Arts from the New York University Tisch Drama Department. 

This is not the first time the actress has made history. In 2005, she was the first actress in a wheelchair to appear on Broadway when she originated the role of Ana in Deaf West’s acclaimed 2015 revival of Spring Awakening. Ali is also a humanitarian and tireless advocate for making Broadway more accessible. She is the co-chair of Women Who Care, an organization supports United Cerebral Palsy of New York City, as well as a founding member of Be More Heroic, an anti-bullying campaign which tours the country connecting with thousands of students each year. 

Learn more about this incredible woman's philosophy by reading Ali's essay "Hosting Your Own Party," or following Ali's adventures on twitter and instagram at @alistroker.

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Rough Around The Edges

I have what’s called a facial difference or deformity. I was born with it, kind of. I’m not sure of the full story behind what happened to me, but I do know I spent the first six months of my life hospitalized as a result of something called a hemangioma. A hemangioma is a benign tumorous growth of blood vessels on the skin. My hemangioma went away but left a significant amount of scar tissue on one side of my face; it also blinded me in one eye and resulted in me having to wear a tracheostomy up until I was about three years old. Fun stuff! Every summer up until I was eleven years old, I’d have reconstructive surgery to correct the scars. I was very fortunate because in spite of my visible difference, my parents raised me the same way as my older sister. I went to regular school, we went on family vacations, and I got in trouble when I was bad. Just kidding, I was never bad! My mom and dad always encouraged me to be whoever I wanted and accepted me for who I am.  My parents also made an effort to protect me from a world that was not always so kind and when they no longer could, we came up with a short speech I could give children who asked the inevitable questions about what ‘happened’ to me; I’d tell them I was born with something that left scars on my face but the doctors are trying to fix it. I still use parts of this speech when people inquire about whether or not I was in a car accident or fire.

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Image Description: Dyana and her sister at Christmas 1994. Her sister is standing behind her. Dyana is eating a cookie and her face is messy from the cookie.

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If you’ve seen the film Wonder or read the book, you know that the main character, Auggie, a little boy who is born with Treacher Collins syndrome, is homeschooled until 5th grade; I obviously was not. Starting school is confusing for everyone, but starting school when you don’t resemble the rest of your classmates is even more confusing. I attended a private school in New York City and although I was never outwardly made fun of by my peers for the way I looked, I had a few classmates that made sure I knew they thought I was inferior to them. In my opinion, it was a projection of their own ignorance and lack of empathy. I often felt alone and excluded but I never connected the dots, and even though I dealt with kids (mostly boys) on the playground or at day camp who called me names or ran away from me in fear, I never really thought about the fact that other kids didn't have surgeries every summer or had seen more doctors since birth than their age number. When I was in 6th grade, I became more aware that I was different looking from other girls in my grade and through a series of events over the next couple years, I got a taste of what that would mean for me for the rest of my life. It means that I will most likely always put people off initially and that no matter where I go or what I do—nothing changes who I am. Growing up, there are were a lot of things I never did because I was afraid of how I’d been received by kids I didn’t know, something I deeply regret because I think knowing the world was bigger than my school would’ve been extremely helpful to me back then. When I first got social media, I never uploaded pictures of my face. It’s almost laughable now because if you could see my Instagram you would see that I post tons of pictures of myself. It’s taken a long time for me to feel comfortable with my appearance.  Self-love is hard and even though I'm much more confident now, there are still things I don’t do because I’m afraid of how I’ll be received.

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Image Description: Dyana at age 12, in a school photo. She is wearing a blue turtleneck and has braces on her teeth.

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The truth is I’ll never be normal and sometimes I wonder whether certain things just aren’t in the cards for people who look like me. My difference or deformity will always be a thing that requires an explanation. Most recently, I had a woman who was waxing my eyebrows ask me if it was okay to wax around my mouth because of my ‘burns’. Beauty is a privilege. It’s easier to be brave when you’re beautiful or even just normal-looking. It doesn’t mean your life is easy or perfect, but the fact is, we live in a society where physical appearance is regarded as a measure of worth and is rewarded as a badge of honor. When you’re constantly being reminded that your physical appearance is problematic, it’s going to inform your behavior, your feelings, your relationships, and everything else.

I'm not asking you to feel bad for me.  My difference doesn’t stop me from having a great life full of friends and family who love me. It doesn’t stop me from having amazing co-workers and casting people to be on cool reality TV shows. It doesn’t stop me from being a huge wrestling fan or loving the Muppets. Though I’m currently single, I’ve been in relationships before. I know that my facial difference will always be an eventual topic of discussion, just like I know when people meet or see me for the first time a little red button of curiosity goes off in their heads. To me, that's perfectly reasonable and fair. Fielding questions from strangers about what’s “wrong” with me is not my favorite thing in the world, but it's something I've learned how to handle. My facial difference is not all of who I am, but it’s certainly a part of it and my experience living with it is the basis for a lot of why I am the way I am. I’m not afraid to be seen and I’m not ashamed, because I have no reason to be. It should be possible to be beautiful because of your differences, not in spite of them.

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Image Description: Dyana today. The photo is in black and white. Dyana is wearing a black dress and is standing in front of a fence with tree bushes around her. Photo credit: Maegan Gindi.

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Like a lot of people I know, I have a bad habit of scrolling through Instagram and comparing myself to other women, including my own best friends on my feed and wondering why I can’t look like them. It would be nice to be “different” or “weird” in a way that attracts positive attention instead of the negative kind. It would be nice to not constantly feel like I’m participating in a competition where the playing field is not level. That will probably never be my life and while I don’t like to admit it because I fancy myself Wonder Woman, sometimes I wish I were someone else. There are days when I want to give up but then I remind myself I‘m a fighter and strong as hell, and I keep trying new things and putting myself out into a world that tells me I don’t belong.

What To Expect When You're Expecting A Child With Spina Bifida

Angus refuses to let his condition define him and he faces life with a smile, determined to surprise, shock, and teach people what ability looks like.

Back in 2010, I was 20 weeks pregnant with our third child. I'm ashamed to say I was complacent when we went into the scan room - just excited to find out the sex of our baby and not at all thinking about the possibility of anything being wrong. After a massively long time the sonographer turned off the machine and looked at us; she told us that she had seen a 'lemon' shape and a 'banana' shape which made it likely our child had spina bifida. And there it was. We knew nothing about it and to be honest the rest of the pregnancy was a whirlwind.

Angus was born, gorgeous and calm, on the 4th of October, 2010. He was whisked off to the special care unit and had his back closure surgery on day 2 of his life. We felt like the luckiest parents alive that first day after his surgery - he was truly the most gorgeous looking baby and all the nurses would fight over him in the ward. No part of us as parents ever didn't feel immense pride in him - he was just perfect to us.

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Image Description: As a child, Angus utilized a standing frame.

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Fast forward 8 years. 8 years of determination and proving everyone wrong. 8 years of fun, laughter and love. Angus has the most wicked sense of humor; he is open and loving. He has never once complained about any of his difficulties despite them being numerous. He falls over ten times a day and we often joke that if Angus cries its time to call an ambulance. Let me put all this into perspective: Spina Bifida is a condition that affects almost every part of your body and this varies widely from person to person. For Angus this means his legs are weak and his feet have a progressive deformity - he wears solid splints to compensate for this but cannot walk far or fast, so he uses a wheelchair for getting around and sports. He is visually impaired, has hydrocephalus, is doubly incontinent, and has poor fine motor skills. He cannot learn new skills easily so school can be difficult for him. He has had to endure lots of medication, treatments, appointments and surgeries.

This all sounds rather bleak, but the reality of Angus is nothing like what he looks like on paper! He is the child I wish I could have seen as a parent expecting a child with Spina Bifida and not knowing what to expect. He refuses to let his condition define him and he faces life with a smile, determined to surprise, shock, and teach people what ability looks like.

He is the child I wish I could have seen as a parent expecting a child with Spina Bifida and not knowing what to expect.

There was a time last year when we saw his confidence drop. He started to be more shy, more aware of his differences, and less able to talk about them. Angus finds it hard because he can walk, but not sufficiently to compete or keep up with his peers, and yet he is not completely paraplegic so he doesn't feel like he fits into that group either. Thankfully, he saw a video online of someone called Aaron Fotheringham who started as a child riding his wheelchair on the skatepark and a girl called Lily Rice who achieved a wheelchair back flip at 13. This inspired him to get involved in the sport WCMX (wheelchair motocross). His amazing resolve set in and he told us he had decided to raise money for a lightweight wheelchair to keep up with his friends. He planned an '8 mile roll' down the river Thames to show how difficult it is to be independent as a wheelchair user. With the help of his incredible school  and our wonderful community he raised the money in less than a week. He was in several local newspapers and amazed us with his resolve and determination - wheeling over three miles himself during his challenge.

Once he received his new lightweight wheelchair, he started alongside his skateboarding brothers to test out what he could achieve at the skateparks - posting a video of him starting out online. Lily (Silver Medalist in WCMX) and her dad Mark came to visit Angus at a local skatepark and shared his video with key people, which ultimately lead to Angus being funded for a bespoke Roma WCMX chair by Princes Gate Trust. This was a life changing moment for Angus.

The area Angus was seriously behind in before starting to train for WCMX was independence. Getting a WCMX chair made specifically for him has changed the way he sees himself - he rides it with pride. He is a child who has gone from having no wheelchair independence to a child popping wheelies, hopping down curbs, and even dropping in on 5 ft half pipes. He has a fearless streak and loves to amaze and surprise people. He talks about his WCMX with a pride we have never seen and honestly we love others seeing how capable and determined he is. He falls and he gets back up, but importantly it teaches everyone that he is just a kid - not a disabled kid, but just a kid. There are no limits on Angus's future - I honestly can see that he will achieve what ever he wants. I hope that other parents can see what is possible and feel hope for their children when they look at Angus. Having challenges in your daily life builds an authentic resilience that I am just in awe of.

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Image Description: Angus Spiers today.

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More than a sport, WCMX brings a community, the chance to compete, time skating with his brothers, and a sense of pride. At a recent event we watched him wheel around, confident to chat to his friends and even his heroes without help. When we look a back over the last year we can't believe all the Angus has achieved and we know his journey has only just begun.

You can follow Angus's adventures on instagram at @anguswcmx.

Just Keep Swimming

 Editor’s note: Support animals are one of the most important accessibility tools that people with differences utilize. Though many assume the only working animals for people with disabilities are dogs for the visually impaired, today all kinds of animals are being trained to accommodate difference. Dogs are now providing service to people with all kinds of conditions, from seizures, to food allergies, to dementia and Alzheimer’s disease. Today we have the story of Elvis, a mobility support service dog, who wrote in to tell us a little bit about how he helps his human thrive. Think you or someone you love might benefit from a service animal? For general information about service animals, check out the Americans with Disabilities Act resource page here. You can also check out this great article, which provides a list of organizations that train dogs for specific conditions. Most of these organizations can provide service animals for free or for very low cost to people who need them. You can apply for a service dog via various organizations, including The Guardian AngelsService Dogs of America, and Paws with a Cause. See this website for a list of frequently asked questions about service animals and the law, according to the Americans with Disabilities Act. You can check out The Service Dog project, which raised Elvisright here. Interested in training your dog to be a service dog? You can find more information here. For more information on types of services dogs and how they work click here.

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mage Description: Elvis and his human in their hospital bed.

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My name is Elvis and I’m a service dog. 

My human came to the Boston from England for medical treatment in 2016. She expected to be here for no more than eight weeks; now, over three years later, she lives full-time in Boston.  She has a complex medical history including dystonia/muscle spasticity, which means that she walks differently than most people. Until I came into her life, she used a wheelchair or crutches for movement. 

 I was born and raised at the Service Dog Project in Ipswich, MA. I was trained as a mobility service dog and was donated to my human in May 2018. I help her walk, balance, and navigate the world. Since I came into her life she has been able to put her crutches and wheelchair away for the most part, although when she does need her wheelchair I am also trained to pull that! She always tells me how much freedom I have given her. Before me she avoided a lot of things. When she came to a set of steps, she was frightened, knowing she would likely fall. When she slipped and stumbled, she often found herself stuck on the floor with her crutches, unable to get up.

Since I came into her life, we take on steps without a doubt. I stop numerous falls, supporting her when she stumbles. If I am unable to stop her from falling, no matter how hard I try, I am right there to get her off the floor. My human often tells me that it is the little moments that make her smile every day. These are simple freedoms like knowing she can step up onto the curb while walking down the street, or grab something off a shelf without losing her balance. I am always right by her side, and if she loses her balance, I’m there to catch her. When she becomes very dizzy or ends up passing out, I am there to support her. I know my human inside and out. I know the days we can play around and the days when I need to be more focused on keeping her safe. I brace to keep her upright, lay under her legs when she is unconscious, and do all I can to support her. I am basically a moving crutch with four legs and a huge heart!

We have been through numerous hospital admissions, surgeries, and emergency room trips together. No matter what situation she puts me in, I am always there to help her navigate the world despite her chronic medical conditions. We have ups and downs, but stick together. For instance, at the beginning of this year my human was really not well at all. Through a long hospital stay, I made sure I slept at the end of her bed every night. I helped her take her first steps during the really tough moments after her surgeries. While I was trained specifically for mobility, during the time we have been a team, I have learned how to read her other medical signals. I am now very in tune with my human. I tend to notice when she is feeling off before she does. Sometimes I can tell that her blood sugar is off, or that she is having a bad mobility day, or that her cardiac issues are acting up. I make sure to tell her when things are off. In this way, I have saved her from getting very sick or hurt multiple times. 

I’m not sure people always realize how important I am to my human and how much I have changed her life. I have prevented multiple emergency room visits, concussions, and injuries.  Perhaps even more important, I have allowed my human to grow so much more confident about living life despite her medical challenges. I have helped remind her that she is so much more than her medical conditions, no matter what they try throwing at her. Looking back at our time together, it is incredible seeing all the achievements she has accomplished with me by her side. I also know that her friends and family are so grateful that my human can live life independently now that she has me. She can have the life she wants, because she is never alone. I always keep an eye on her. 

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Image Description: Elvis and his human in the hospital. Elvis is wearing scrubs and his human is smiling broadly.

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Balancing school, health, an internship, and life can seem quite challenging at times, but we embrace every moment. We made a promise to ourselves to live life to the fullest, make the best memories, and pursue our goals without looking back. My human also has some incredible doctors that helped inspire her passion to work in medicine. (Not that she needed much pushing! She has been known to take her finals in the hospital the night before surgery.) She just loves to help people, especially children, in any way she can. In fact, we both love volunteering with kids. Before me, she couldn’t do this volunteer work very often because of her mobility challenges. Now, we do it together all the time. 

I would be lying if I said there weren't any moments where my human’s health scares us! There are definitely tough days, especially during hospital stays. Through it all, however, she has a determination that never seems to fade. She says that she couldn’t do it without me or the support system she has built. We help her “just keep swimming”, a saying that she holds on to in those tough moments. We always keep swimming, no matter what life throws at us, together. There’s another saying she says a lot, which I like. When people doubt her ability to pursue her goals, or try to put limits on her, she says: “Just because my path is different, doesn’t mean I am lost.” We walk through the world together, and that might seem different to some people, but we are definitely not lost. While we never expected our journey to look like this, we know we are exactly where we need to be. 

I am Service Dog Elvis and I have helped give my human her life back. You can follow my adventures on Instagram @servicedogelvis and my trainers, The Service Dog Project, at @servicedogproject!

Meet Karli: Representing Difference On Children's TV

How important is it for children to see representations of themselves on television? Numerous studies have shown that children benefit from encountering media in which they can see people who look and sound like they do, though much of the research on this topic is regarding representations of race and gender difference. More and more, however, there is recognition that children with disabilities and other forms of difference need representation too. Sesame Street has historically done a wonderful job of representing all kinds of children and families on their show. In 2017, the program made new strides in this direction, debuting Julia, a character on the autism spectrum. In the last year, the show has introduced Julia's family (and her dog!). Julia is part of Sesame Workshop's initiative to See Amazing in All Children. The program offers resources and information for families who are affected by autism. Educational psychologist Dr. Jeannette Betancourt, who leads the Sesame Workshop's social impact initiative, said that Julia is intended to help viewers see the similarities between all families, no matter their situation, as well as learn about the autism spectrum.

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Now, Sesame Workshop has introduced Karli, a new character whose parents are recovering from addiction. Recognizing that more and more of our nation's children are affected by the addictions of their caretakers and families, Sesame Workshop has decided to show its viewers the challenges and successes experienced by Karli and her family. One of the best part of the above segment, which introduced Karli, is that it affirms the idea that addiction is a sickness which requires treatment. This will help children understand that their parents have not abandoned them by seeking help, but are in fact getting help in order to be better parents. The segment also emphasizes the fact that parents who need to leave their children for addiction treatment are faced with a terribly painful decision. As Salia says in the segment above, though her parents were only away from her in treatment for sixty days, to her that time felt like sixty years. As Salia's dad reminds her, it felt terribly long when he was away from her too. He cried because he didn't want to leave her, but he went to rehab because he wanted to be a better parent.

Karli's introduction to Sesame Street represents an important step for representation of children who are affected by addiction and other mental health conditions. We believe that this character will not only help children affected by addiction realize that they are not alone, but help children and their parents have important conversations about respecting difference and finding the common ground that we all share.

For more information about how representation affects children, check out the Tuft's University Children's Television Project.

No More Blaming Myself: My Journey With Narcolepsy

Narcolepsy is a strange disorder. It’s strange because it centers on universal experiences: sleep and fatigue. Everyone knows what it feels like to be tired; everyone knows what it feels like to be sleepy. That said, there is a difference between narcolepsy and sleepiness, and it’s particularly important to recognize that fact when talking about an “invisible” disability like narcolepsy.

Many people lead entirely normal lives until they begin experiencing symptoms of narcolepsy. For me, it started in college. At first I just started sleeping more, feeling like I needed naps every single day. Then I started needing them twice or three times a day. Eventually, I started falling asleep involuntarily. I would fall asleep two or three times in a 60-minute lecture. I would get up in the middle of class and run laps around the building to wake myself up, only to sit down again and succumb to sleep almost immediately. I started to gain weight rapidly, and was sick all the time. I started to have intense, realistic night terrors that made me afraid to get into bed at night.

While all this was going on, I was a freshman in college and I assumed that this must just be a result of my failure to take care of myself, a consequence of staying out late at parties and reveling in my newfound freedom. So I tried to buckle down: I cut back on socializing, spent more hours in the library, tried to maintain a proper sleep schedule. But it only got worse as time went on – my grades started to slip, my relationships became strained and I fell into a deep and unrelenting depression. I felt like my whole world was falling apart because I could no longer trust my body, and by extension, myself.

I didn’t find out I had narcolepsy for a long time, so I had no word to use to try to explain these events to myself, or to others. I tried to describe how different this was from anything I had ever experienced before. I tried to prevail upon professors and administrators to hear how much I was struggling to understand what was happening. But for the most part, all anyone heard was how tired I was, and that was simply not excuse enough.

I sought out doctors at many different institutions and with many different specialties. They ran many tests that consistently came back normal; my symptoms were simply not enough to make any kind of definitive diagnosis. After receiving that message so many times, from so many people, it stopped being about my physical body. It started to be about me as a person. I was simply not enough.

I spent a long time feeling like I was coming up short, even after I was diagnosed. Even now, I sometimes ask myself: do I really need a nap or am I being selfish? Am I just lazy? Sometimes these questions get bigger and scarier: will I ever find someone who can love and accept me given my needs and circumstances? Will narcolepsy keep me from achieving my dreams?

But recently I also discovered that I’ve finally stopped blaming myself. It took hard work to come to terms with my disability and to incorporate it into my identity. I won't say that every day is easy, but I will say that having narcolepsy forced me to slow down, to look around and appreciate my strength, tenacity and conviction. It dared me to appreciate the joy of uninhibited laughter and the satisfaction of a hard-won achievement. Perhaps most of all, it taught me to embrace those who can embrace all of me, who don’t see my disability as a barrier, but as one part of who I am.

I didn’t get here alone. I wouldn’t be where I am today without the support of others: fellow PWN (People With Narcolepsy) who have inspired me and lit the path for me during one of the darkest moments of my life, my therapist who continues to help me find compassion for myself, my friends who have stuck with me even when I wasn’t much fun to be around, and my family who have been unfailing in their efforts to understand my disability and champion efforts to cure it. I wouldn’t be where I am today without you all.

I am different. Narcolepsy makes me different. My “tired” is distinct from yours, my “sleepy” is not the same. But in that difference, there should be power, not shame. I’m proud to finally be able to see that for myself.

Epilepsy Is A Part Of Me

As a child, I was told that I was prone to seizures, but I never thought I would experience them as part of my day to day life.  Everything changed, however, the first day of orientation during my freshman year at Wheaton College. 

 I spent the day like everyone else - moving into my dorm room, unpacking, saying goodbye to my mom and saying hello to the next chapter of my college life.  

And then it happened.  I was out with some new friends, eating pizza, when a piece got stuck in my throat.  Seconds later, my right arm lost sensation.  I started to lose consciousness.  I screamed for help.  I thought I was dying. 

 I was told my seizure lasted for a few minutes; I fell out of my chair and my body shook uncontrollably on the floor.  EMS came immediately and rushed me to the hospital.  

From that moment on, my life shifted. Suddenly it revolved around regular visits to doctors and  hospitals, as well as frequent testing (MRIs and EEGs). I also had to try out different seizure medications to find the one that was the best fit for me.

 In my college years, if anyone mentioned the word “epilepsy” or the word “seizure” I couldn’t tolerate it.  I worried about my future.  Would I graduate college?  Would I get a job?  Would I have friends? 

Around this point in my journey, I met Dr. Devinsky from Finding A Cure for Epilepsy and Seizures (FACES).  I have vivid memories of how I felt during my first appointment.  I don’t remember much of what he said when we first met, but I definitely remember that I was crying hysterically. Dr. Devinsky has played an important role in my journey. Over time, he found a medication to adequately control my seizures.  I am grateful beyond words.

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Image Description: A woman looking up at the camera contemplatively.

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 I have been seizure free for six years. This was a critical step forward in my journey, and it presented me with the next important transition in my life with epilepsy.I needed to decide how I wanted to live.  Was I going to live live with fear and or live with courage? Was I going to tolerate the fear of never following my dreams? Could I live with my  fear that my life would be crushed by my condition? Or, would I find  the courage to persevere? Would I find the courage to push forward?

I chose to live with courage.

I refer to this choice as “my acceptance.”  For me, it’s about finding a way to cope and live with the condition - for what it is - while living my life as fully as possible.  

Acceptance and life experience led to four big shifts in my outlook, and my life: 

BEFORE, I thought: People would not accept me because of my epilepsy; I worried they would doubt my abilities because of my condition. NOW, I can see that people recognize how capable I am - based on my performance, rather than my epilepsy. 

BEFORE: I could not tolerate epilepsy.NOW, I am comfortable with my epilepsy, and I can talk about it openly.

BEFORE, I thought:  I could never drive or socialize freely.NOW, I have my license and drive myself to and from social events with friends. 

BEFORE, I thought: I was at the mercy of my disorder, loaded with anxiety and fear. NOW, I am on the right medication and have educated myself about my condition. My choices make me a healthy and functioning person. 

I’ve come a long way…

As a girl, I didn’t understand the word.  

As a young adult, I couldn't handle hearing the word.

Now, as a woman, I can talk about my condition and say: epilepsy is a part of me.

How The ADA Helped Me

My name is Jane and I was born in Chicago. Soon after my birth, doctors realized I had cerebral palsy.  My CP resulted in physical and cognitive deficits. I have right arm weakness which prohibits me from doing two-handed tasks. My attention deficits, slower processing speed, and problem-solving skills affect my academic and vocational performance if accommodations are not granted. 

For these reasons, the Americans With Disabilities Act (ADA) has played a crucial role in my education. Because of the ADA, I was able to graduate from high school, college, and graduate school. Having my CP-related deficits did not make excelling easy. I had to work twice as hard as the typical student without a learning disability and I had to be pretty resourceful to get around my one-handedness in school and graduate training.  

The ADA insured that reasonable accommodations would be made during my entire schooling. As I write, you will see what is meant by “reasonable accommodations.” For me, it began when I began experiencing academic difficulties in fourth grade. After receiving a neuropsychological evaluation that revealed my deficits, I started receiving accommodations. The accommodations included receiving extended time on exams and projects, getting the help of a peer note-taker, and getting access to class material prior to the start of each semester. I needed extended time because my processing of information was slow, a peer note-taker because I was a slow writer, and access to class material would allow me to study in the summer so I would not lag behind the class because of my slow reading.  The accommodations leveled the playing field for me so that I could demonstrate my intelligence and not be hindered by slow processing and reading.  

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Image Description: A group of friends watch as one young man, who utilizes a wheelchair, shares an image on his phone with them.

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As I continued my education, my accommodations changed as the program demands changed.  When I entered graduate school to get my masters in Psychology, I needed accommodations that would serve me both in class and in clinic practicums. In class, I continued to receive extended time for exams and a peer note-taker. For clinic practicums, I now required audio recording privileges to take home after therapy sessions. Students in my program were generally not permitted to take home audio recordings of their patient sessions.  The Office of Students with Disabilities (which is responsible for ADA implementation in my program) arranged for special permission for me to take home the recordings of my patients so I could fill in the gaps of my therapy notes that occurred because of my slower processing speed and working memory deficits. Physically, I had to learn compensatory strategies to manipulate testing materials. An occupational therapist taught me ways to maneuver materials using one hand. She taught me to use therapy “sticky mats” to keep things in place and ways to grab materials in a seamless manner during sessions with clients. The occupational therapist also suggested using a suitcase with wheels to carry all my books and materials to the clinic. Again, the faculty recognized by unusual changes in procedures as “reasonable accommodations” since they were protections offered by the ADA. 

The ADA applies to all individuals with disabilities in all levels of education and employment. According to the United States Department of Justice Civil Rights Division on the ADA:

“This law is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an ‘equal opportunity’ law for people with disabilities.”

The faculty members in my program were unaware of how the ADA applied to students in graduate school. Most assumed that the ADA only applies to students in secondary undergraduate programs. Their incorrect understanding of the law and reluctance to understand my eligibility for accommodations in graduate school prompted me to seek the advice of legal council. With the help of an attorney advocating for my rights, the faculty began to comply and grant my accommodations. The main reason colleges have a center for students with disabilities is because of the ADA for students. Unfortunately, in my case, my school’s Center for Students with Disabilities was unable to be helpful. Thankfully, the law is there to protect people in my position. 

I am now working at the Children’s Hospital of Philadelphia. I continue to use the same accommodations that I used in graduate school in my work today.

Everyone Deserves A Prom

Going to the prom is often a rite of passage for teenagers, and yet many young people with differences don't get to go to prom because their schools or support programs don't sponsor prom events. That's where the Tim Tebow Foundation comes in. Every year the Foundation hosts "Night to Shine" events all over the country and world, where people over the age of 14 with differences can come to get their hair and make up done, get their shoes shined, ride in a limo, dance the night away, and be crowned King or Queen of the Prom. It's a very special program and this year it takes place on February 7th.

You can check out highlights from last year's event in the video below, and we'll be updating this post as we get highlights from this year's event in the coming days. Given the popularity of last year's events, which drew 100,000 people, this year's events are likely to draw 115,000 guests with disabilities and 215,000 volunteers.

Looking to find an event near you? Check out this year's event locations here.

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