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.
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.
Because of her advocacy work in the disability community, NMD United was super excited to interview Hannah about life with NMD, access barriers, and what independence means to her.
We asked Hannah six questions about life with NMD. Here are her responses:
What is your favorite living with NMD life hack?
Well, I'm going to have to say learning to not give a f*ck about what people think. Part of this includes developing a healthy level of assertiveness and intimidation when dealing with people who think they know more about my body and disability than I do (ie, doctors and insurance companies). If I'm able to share an NSFW life hack, definitely tying a string around my vibrator to prevent dropping it.
Are you inspirational? Why or why not?
It depends who's being inspired. I don't mind being inspirational for other disabled individuals or parents of children with disabilities--I feel that part of my responsibility is working to better my community, and so if I am able to be a representation for other disabled individuals I am more than happy to do so. If able-bodied individuals find me inspirational, though, I'd encourage them to question why they feel that way.
What's the best and worst part of living with an NMD?
Best part: being a part of one hell of a community and getting to meet so many amazing people with disabilities similar to mine. Also, having a perspective on life and society that allows me recognize ableism and how it functions.
Worst part: Dealing with both overt and implicit ableism.
What quality of life issue do you feel most impacts our community's ability to sustain or gain independence? Explain.
This is ultimately a complex issue. On the surface, I'd say the biggest barrier facing the disability community is access, which can mean many different things, including employment opportunities, healthcare, transportation, and physical access to buildings.
If I had to narrow this further, though, I would say our biggest barrier is not being given adequate hours of attendant care. Realistically, I need around the clock help in order to live independently, go to school, work, and participate in/contribute to society. Because I am currently in graduate school, I get funding for my personal care attendants through Medicaid and Vocational Rehabilitation Services, which (almost) covers all of my hours. Once I graduate with my Master's and start working full-time, however, my Voc Rehab funding will be cut, and I'll be down to the approximate 7 hours of care per day through Medicaid.
Supposedly my future employer is meant to provide me with the supports I'll be losing from Voc Rehab, but I'm unsure of how that's supposed to work out. Is an employer really going to pay for someone to come in and help me with all of the things I need help with? Or am I just supposed to rely on my coworkers to help me use the bathroom, eat, get to and from places, etc.? Of course it's not that simple--the reason disabled individuals have so little funding for attendant care is because laws have been written to make sure as little government money as possible is being used to allow us to live independently.
What does independence mean to you? Explain.
Independence means having autonomy over my body and my life. It means being able to choose where I live (ie, not in a nursing home), who I hire as personal care attendants, and where I work (ie, a job I have the skillset for, not just a job that is "accessible"). It means being able to travel from one place to another via accessible transportation, whether that be fully accessible public transport systems or a wheelchair accessible van (or, I don't know, airplanes that can actually accommodate wheelchairs?). It means being able to marry without losing my SSI or Medicaid benefits. It means being able to decide whether or not I want a cure or treatment for my disease without being pressured one way or another by a culture and society that values able bodies and able minds above everything else. It means, ultimately, recognition of how ableism is ingrained in our society and working like hell to change that.
What would you say to your 13 year-old self about living with NMD?
13 year-old me was so incredibly insecure in my body and my identity. I mean, I think most 13 year-olds are, but body image and self esteem issues definitely affect disabled teens on a whole different level than nondisabled teens. I'd like to tell my 13 year-old self to not give up, and that there is absolutely nothing wrong with me or my body. I'd tell myself my favorite living with NMD hack: stop giving a f*ck what people think.
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.
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.
Elena Muñoz Ruiz
Elena Muñoz Ruiz is from San Cristóbal De Las Casas, Chiapas; México. She is 40 years old and has spinal muscular atrophy type 2, and is a freelance illustrator. You can also find her work on Facebook (@mascotidiana), instagram (@soyelenanele), and Etsy (@catbrush).
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."
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.
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!
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.
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
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.
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.
Got a Story?
Be featured in Smith's Showcase!