Smith's Showcase

The Strength Coach, Greg Smith, served on the NMD United Board of Directors for the last year of his life. In that short time, NMD United learned a lifetime of lessons. Greg was a master at marketing and promotion. He was also a motivational speaker, author, and documentary film producer.  Smith's Showcase will tell the stories and promote the talents of adults living with NMDs around the world.

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Featured Badass

Right-side view of a Chinese American woman in a power wheelchair at sunset.
Aubrie Lee

Aubrie Lee is an artist with an engineering degree from Stanford University. She enjoys riddles, holographic foil, and jackets with inside pockets.

 

You can follow her on Twitter and find more of her work at aubrielee.com.

Image description: A Chinese American woman with red lipstick turning her body to face the camera from her power wheelchair.

A letter to my younger self

To a younger me,

 

I’m writing you the letter I wish I had gotten when I was diagnosed. “Infantile-onset facioscapulohumeral muscular dystrophy” gives you a name for why you’ve never been able to smile, why you get more tired than other kids, and why you can’t lift your arms above your head anymore. The diagnosis will also improve your spelling (I found the journal you left for me about wanting to become a “syentest”).

 

About those other kids, you don’t have to be shy like I was. When they ask you why your lips stick out, take the opportunity to make a new friend. You’re self-conscious now, but people pay money for shots to make their lips look like yours (I’m not sure how much money, but it’s more than you’ve ever gotten in a hong bao). And one day, when your muscles have weakened to the point where kids are asking you why you walk “different”, a stranger will go out of his way to respectfully tell you, “You’re very beautiful.” You won’t know what to say. As he walks away, you’ll realize that his back is disfigured, and you’ll wish you could thank him all these years later.

 

When people hurt you, you will call yourself a mirror that reveals their true character. But that’s not the mirror that matters. Hold yourself up to other Disabled people. See their beauty. See your beauty in them, and let them see theirs in you. You’ve always been proud of your mind, but you think of it as your body’s redemption. Be proud of your body. No one can cure muscular dystrophy. But no one can choose it, either. The perspectives you’ll get to behold, the beauty you’ll get to embody, people cannot even pay for, though they may try.

 

Question whether people’s lessons are lies. They can’t tell the difference.

  • “Survival of the fittest.” Genetic mutations like yours aren’t an exception to evolution; they are its mechanism. But biology doesn’t determine your worth anyway. Forget Darwin. You have the same rights as all humans do. You deserve to live and to create life.

  • “According to Maslow’s hierarchy of needs.” Maslow wrote that “the study of crippled … and unhealthy specimens can yield only a cripple psychology and a cripple philosophy.” His hierarchy was not meant for you; it was meant to erase you. Forget Maslow. Raze his pyramid to the ground and build your shining cripple philosophy on its ruins.

  • “Focus on what you can do, not what you can’t do.” Ability is not the goal. Autonomy is. Focus on what you want to do, and if you can’t do it, fix whatever systems stand in your way. It’s wrong that you should have to be the one to fight the ableism that holds you back, but as with every wrong, use it as fuel for a sun’s worth of fire.

 

Free yourself from the curse they call a cure. Don’t believe them—there’s nothing wrong with you.

 

You’re not a blemish.

You’re not a burden.

You’re not a broken thing.

 

I should have told you this sooner, and I’m sorry.

 

It’s okay to mourn the death of the life you thought you were going to live. And it’s okay to grieve each time your body gets weaker. But even though you can’t lift your arms, anything you want to be—artist, model, even “syentest”—is still within your reach. You will get to live so much life, so many lives, one for every muscle you lose.

 

On your 25th birthday, about a decade after you start using a wheelchair, your wonderful mother will write of you, “A barrier is merely the scaffolding upon which she crafts her visions and accomplishes her goals.” Constraints increase creativity. Disability drives innovation. Do you see the truth now? Your disabilities are how humankind evolves not just its biology but its civilizations. You lament that you were born into a world not built for you. Of course it wasn’t built for you. It has never met you. Show it what it owes you and your people. Continue the scaffolding raised by your Disabled ancestors and construct a world for all those seen as blemishes and burdens and broken things.

 

Seek out other Disabled people, older and younger, with muscular dystrophy and without. Overcome your internalized ableism. Go to MDA Summer Camp and actually talk with the campers, not just the abled counselors. Go to Youth Leadership Forum to find out, for the first time, how it feels to be the majority in the room. Go to Crip Camp’s virtual summer camp and realize that Disability is not only about rights, but about culture—that our movement is made not only of words, but of songs. Get used to calling yourself disabled. Get used to calling yourself Disabled and proud. Find the Disability community, and let us all angle our mirrors to merge the light of one billion suns. At the end of a livestream, one of these suns will say to you—in case you have not heard it from anyone else—“You are perfect.”

 

You think you want to be normal. What you really want is to be loved.

 

To a younger me, and to any disabled child of this world: You are beautiful, you are powerful, you are perfect. I’m telling you this now in case no one else has.

 

When you’re ready, we will create the future together.

 

With the love you’ve always deserved,

Aubrie

Ing Wong-Ward
Ing Wong-Ward

Ing Wong-Ward lives in Toronto, Canada with her husband and daughter, in a condo overlooking the skyline. When she was working, she was a producer for the Canadian Broadcasting Corporation. She was most recently the Associate Director of the Centre for Independent Living in Toronto. 

 

Unfortunately, Ing was diagnosed with a terminal form of colon cancer two years ago. She is now advocating for greater access to palliative care and had written about her experiences as a palliative patient with a neuromuscular disability. 

 

Ing was diagnosed with Type 2 Spinal Muscular Atrophy as an infant. She has always found solace and pride in being part of such a vibrant community. 

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Elizabette Guéçamburu

Elizabette Guéçamburu is a master with words. If you're looking for a blog that covers a variety of topics, this is one to follow. You'll find yourself pulled in by her storytelling magic and humor after a couple posts!

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Hannah Soyer

Hannah Soyer is a creative nonfiction writer and journalist. Her work focuses on underrepresented groups, under-talked about things, and how these fit into the idea of the “other.” She has written for the Disability Visibility Project, Rooted in Rights blog, and Cosmopolitan (among other various publications). She is the creator of the This Body is Worthy project, which aims to celebrate and represent bodies that are outside of mainstream beauty ideals. She is also the founder of Freedom Words, a program to design and implement creative writing workshops specifically for students with disabilities.

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Elena Muñoz Ruiz

Elena Muñoz Ruiz is from San Cristóbal De Las Casas, Chiapas; México. Elena is 40 years old and has spinal muscular atrophy type 2, and is a freelance illustrator. You can find her work on Facebook (@mascotidiana), as well as Instagram (@soyelenanele), and for sale on Etsy (@catbrush). 

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Heather Watkins

Heather Watkins is a Disability Advocate, author, blogger, mother, graduate of Emerson College with a B.S. in Mass Communications. Born with Muscular Dystrophy, loves reading, daydreaming, chocolate, and serves on a handful of disability-related boards. Her blog Slow Walkers See More includes reflections and insight from her life with disability.

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Alice Wong

Alice Wong is a disability activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture created in 2014. Alice is also a co-partner in two projects: DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, and #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people. Alice launched the Disability Visibility podcast in September 2017 and currently works as an independent research consultant as part of her side hustle. You can find her on Twitter: @SFdirewolf

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Shane Burcaw

Shane is an author of several books about living with spinal muscular atrophy. He runs a nonprofit organization called Laughing At My Nightmare that is dedicated to providing equipment to people living with muscular dystrophy diseases. Most recently, Shane and his girlfriend, Hannah, have been working on a vlog about their relationship, attempting to correct some of society’s misconceptions of dating with a disability. research consultant as part of her side hustle.

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Brad Cisar

Riggs Communications is a Pittsburgh-based integrated creative agency, specializing in creating meaningful branding and advertising solutions nationwide for B2B and B2C clientele. We strategically build a company from the ground up meticulously paying attention to every detail.

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Melissa Eckardt

Melissa grew up taking classes for watercolors, scetching, and acrylic painting. In her early 30’s, she switched to digital art.

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Steve Way

Steve Way is featured in many episodes of the Hulu show Ramy, which premiered in April to tons of acclaim. Steve plays one of Ramy's best friends on the show. He brings a hilarious and REAL portrayal to the screen that anyone with a NMD can relate and at times laugh along with.

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Ali Ramos

Ali is a graphic designer that has been in the field for over a decade. She started her schooling at a community college in Amarillo, TX and then moved to Los Angeles, CA to attend Otis College of Art & Design. "I was able to grow and find ways to improve my skill of creating vector pieces which ultimately led me to find my own style. Even though I don't have a formal degree, I find that experience is more important than a piece of paper, and I have plenty of experience."

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Jessica Gimeno

Jessica Gimeno has been living with myasthenia gravis for a decade, which she acquired in her early 20s.

 

She is a health activist, blogger, and speaker best known her TEDx Talk, "How to Get Stuff Done When You Are Depressed." Healthline named her TEDx Talk, 'One of the Best Depression Videos of the Year,' for two consecutive years. After experiencing drastic changes in her appearance due to myasthenia gravis medications, Jessica launched her website, 'Fashionably ill ®,' in 2012. Fashionably ill ® is about surviving pain with style and humor.

 

Jessica has an eponymous YouTube channel that follows her journey living with five chronic illnesses: myasthenia gravis, endometriosis, bipolar 2, psoriasis, and asthma. She has been featured in NBC News, BuzzFeed, MSNBC, Huffington Post, and The Chicago Tribune.

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