“Repeat after me: newspaper, rose, hamburger”.

No response.

“Ms. Smith, repeat after me, newspaper, rose, hamburger”.

No response.

The clinician looked at 22-year-old me and said, “Ms. Smith has progressive Multiple Sclerosis – this is a very severe case.”   This was my last day at my clinical placement, it was all too much for me to handle.

I was diagnosed with Multiple Sclerosis in 2012; I was 22 at the time.  They were not sure what was wrong with me at first.  I was a frail, 20-something college student, following a strict “vegan diet” to cover up underlying issues with food and chain smoking American Spirits – I was the poster child for malnourishment and ill health. But my symptoms had suddenly become much more serious than just poor general health.  My symptoms consisted of going blind in my right eye when overheated, stressed, working out, eating soup, drinking coffee, sitting in fluorescent lights, smoking, drinking, sitting in class, putting on eyeliner – okay, I was basically blind all the time! For a long time though, I hid my symptoms. I would tell my friends, “It’s getting better!”

I went through a year of tests – spinal taps, blood work, MRIs, you name it.  My mother has had Multiple Sclerosis since 1998 and with my family history and the nerve damage in my right eye, the doctors wanted to be thorough.  One hospital discharged me and told me to take vitamins. After a year of multiple hospitals, cities, and doctors, I was diagnosed.  Multiple Sclerosis, according to the National Multiple Sclerosis Society, is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.  No, I wasn’t going to die – but it sure felt like that sometimes.

I was a Speech-Language Pathology undergraduate student at the time and my final placement was at a rehab center in Brooklyn.  I could tell my professors were nervous about sending me there after hearing of my recent diagnosis, but I felt positive about the placement; after all, I had been living with my mother having this disabling disease my whole life.  I even wrote in one of my papers that I wanted to work with adults with neurogenic disorders.  At the time, I don’t think I realized how much this placement would affect me.  One client I met had progressive Multiple Sclerosis, and her mind was gone.  No responses.  No eye contact.  No “connection” to her verbal language.  The clinician explained that they saw her decline and watched this disease take everything she had to offer. I was a good student. Straight A’s, always punctual, engaging and communicative.  I stopped going.  This was my final year of school, and I just gave up.  It was too much.  Luckily, Marymount Manhattan College has wonderful and empathetic professors who understood what I was going through and changed my placement to a preschool. I will forever be thankful for that.

Now that I’m in graduate school, I look back on those moments of weakness in the first months of my diagnosis. I am now, a completely different person.  My Multiple Sclerosis has changed me, and for lack of a better term, for the better.

I left New York City in 2014 to move to Philadelphia.  Philadelphia was closer to my parents and had cheaper rent.  I had always an interest in nutrition, hence my vegan diet at such a young age, and I started learning how to take care of myself through nutrition.  I started accepting that my condition was incurable, and I needed to handle it.  I chose to stop taking my disease-modifying drugs, which left bruises all over my body, and manage this disease in a more holistic fashion.  I kept up with my vegan diet, but incorporated more whole, plant based foods.  I started juicing, eating raw foods, and exercising daily.  Now, by no means, am I perfect at this point.  This has been a journey and quite the process.  In early 2015, I met my future husband, and we moved to Colorado a year later.  Still eating whole foods and managing my Multiple Sclerosis naturally – I remained symptom free. I started my graduate degree in Speech Pathology, and my Multiple Sclerosis was nowhere to be found.  I felt like I healed myself.  I wrote a blog and gave diet and exercise advice to everyone who asked (and people who didn’t ask).

And then, in 2017, I forgot how to walk for the first time.  After a year of a vigorous running schedule, graduate school and a miscarriage, my body said no more. My diet was good, but it wasn’t great.  As cliché as this sounds, life happens.  Things take the back burner – things that shouldn’t.  At the time, I was off disease modifying drugs for 3 years with no symptoms. I became lax.  I had too many glasses of wine some nights, and living back in Philadelphia, too many vegan cheesesteaks.  Just when I thought I was done with this disease, I was right back where I had started – in that god awful tube for another MRI.  My legs were weak and shaky and I had no feeling in the left side of my body. Once again, Multiple Sclerosis wasn’t going to kill me, but it sure felt like that.

I have a lot of flaws and a lot of things I do not like about myself.  But there is one thing that I’m pretty amazing at: I don’t take no for an answer.  Multiple Sclerosis has taught me that.  I can barely walk? Nope, not happening.  I took it to another level.  I stopped running, even as much as I loved it; I felt that it was too much on my central nervous system.  I started doing yoga instead – and practicing meditation. I stopped drinking – it didn’t do anything for my body. I began asking myself a question every day when waking up – what can I do for my body and my health today? What is the best for Monica? I continued eating a whole food, plant based diet and started eating 9-10 cups of raw leafy greens a day. I also began supplementing with vitamin D, which is great for people with Multiple Sclerosis.  

When asked to tell my story I find myself thinking – well what part?  Do you want to know about the 22-year-old that couldn’t handle her clinical placement due to an unfortunate diagnosis, who you could find on East 90th street chain-smoking?  Do you want to know about my years of healing where I became a spokeswoman for healing multiple sclerosis and then miserably failed by losing my ability to walk? Do you want to know about my current diet and how I overcame failure?  Ask me for my story in a year, and it will be longer. There will be more successes along with hardships.  With or without an unfortunate diagnosis, life goes on. Our story lengthens as we grow as individuals.

Repeat after me, “hamburger, rose, newspaper.”

Today, I can repeat.  And that’s all that matters.

Since the age of two, when I incurred a spinal cord injury, I have used a wheelchair. One of the most complex parts of living with a disability is handling the way the rest of the world receives you.  I am a super observant person and feel like often I am met with people being unsure of how to move, communicate, or simply coexist with me.  This has led me to a concept that I’ve integrated into my life called, “Hosting Your Own Party.” What I mean by this is that you have the opportunity to either lead or to host situations which might be totally awkward, and turn them into light and controlled moments. How do you do that? First, you must remember that you know yourself and your disability better than anyone! So, below are the steps on how to Host Your Own Party:

1. Look the Person in the Eye and Greet Them:  People will often rush to one of two things: help or get out of the way.  I think reminding others that there’s no rush and that everything is under control is helpful.  We’re all human beings and no one’s going to bite… yet!

2. Be Clear and Precise: Whether you need help or assistance with something, or do not want help (for example getting in and out of an Uber), I’ve found that clear communication has been my best friend.  For example: I say, “I do not need help getting in the car.  I just need help with my wheelchair.”  Now, a lot of people don’t hear you or believe you, and rush to help you regardless.  This is your moment to stop and remind them that you’re the host, this is your party, and they’re not going to grab the reins on this one!

3. Be a Coach: I was lucky and grew up with a coach for a Dad. I’ve found a lot of success in offering positive reinforcement when dealing with someone who seems nervous around me.  For example - back to getting in and out of an Uber – I’ll tell the driver, when they’ve helped me in the way that I’ve asked, “That’s great. Thank you so much!”  And if they happen to get grabby, and try to help in ways that I haven’t asked for, I’ll tell them simply and clearly, “No, don’t do that. Thank you.”

4. Give Yourself Credit: By taking hold of these situations in your life, you give yourself the confidence to know, “You got this.” It takes practice, and you need to do the reps.  This “hosting your party” thing doesn’t just happen overnight, but over time, being disabled can become really powerful. It can make you realize that you can do anything as long as you’re doing it in your own way.  Give yourself a pat on the back.  You’ve accomplished a task that required another person coming into your party and you’re the one who got them there!

5. It’s Not All About You: One of the secrets of living life with a disability is to give others the opportunity to feel helpful.  Remember that kid in the first grade who was just dying to help the teacher? We all have that little kid inside of us and you’ve given someone that opportunity to reconnect with them.

6. Confidence is Key: Okay, I consider myself a pretty confident person.  I’ve been in a chair since I was two years old and have worked so hard to love and trust myself over the past twenty-eight years. However, there are days when I have to fake it. I choose to fake it because I find that even canned confidence feels better than none at all.

7. Costumes and Treats are Helpful: I respond REALLY well to rewards, always have. It was one of the ways I was taught to push my wheelchair as a four year old: “Ali, if you push to the end of the block, you can have anything in my purse!” my babysitter would say.  When I’ve had a tough day or a tough moment where all these tips that I’ve given haven’t worked, I go to the coffee shop and I get myself a treat. Maybe a brownie….  Even if I didn’t do great, I know I tried my best. “Costumes” in this context means that I like to wear clothes and accessories that make me feel FIERCE.  I need to feel like superwoman sometimes after pushing fifteen blocks, and looking down and seeing my favorite Doc Martens on my feet gives me that boost.

Everyone with a disability has their own style. It’s taken me years to find mine. These are tips that have helped me, and if one of them can give you a hand, I’ll be thrilled, because you deserve it!  Go out and “Host your party” to the fullest, in your own way. You’re kicking butt!!

Love and respect,

Your party planner Ali

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.

‍

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.

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.

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.

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.

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.

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.

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.

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.

 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 Angels, Service 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 Elvis, right 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.

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!

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.

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.

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.

‍