Is scoliosis a disability?

The definition of disability is “a physical or mental condition that limits a person’s movements, senses, or activities.” ⁱ Since I have scoliosis and specialize in working with people who have scoli, I’m often asked if scoliosis is a disability. I have very strong feelings about this topic, but before I tell you my opinion, I’m going to let you see what the medical community and a few governments have to say about it.

Some of the top medical centers around the United States, including Johns Hopkins, UNC Medical Center, Cleveland Clinic, Mayfield Clinic, Texas Children’s Hospital and many more, have the word “deformity” in the title of their specialty scoliosis center or use it to describe scoliosis on their website. When it comes to scoliosis, if one thinks they are disabled they also think they’re deformed. They go hand-in-hand.

What do you think a parent of a child with scoli or someone with scoliosis is taught to think when they walk into one of these centers? They are told in big, bold letters by the outside of the building that they or their child is deformed.

Additionally, both the United States’ and Canada’s governments offer disability benefits to those who have scoliosis, if they meet certain standards. While I understand there may be people who are so affected by scoliosis that they are physically unable to work long-term, I can honestly say that I have never met someone who would fall into this category—and I’ve worked with A LOT of people that have scoli. I’ve seen curves well over 60 degrees, failed spinal fusions, genetic abnormalities, and the list goes on.

Despite all of this, I emphatically believe to the depths of my soul that scoliosis is not a disability.

I’ve specialized in working with people who have scoliosis for over a decade and try to communicate this message through my work. I have scoliosis, have traveled around the world giving workshops on scoli, have a Pilates studio that specializes in scoliosis, have created books, videos, apps, and more resources to help inform the scoliosis community around the world that scoli doesn’t have to dictate who they are or who they can become.

It greatly saddens me that the medical community and government don’t encourage people affected by scoliosis to think positively and act proactively about their scoliosis—if they did, people would change their words and actions.

Did you know that many people with scoliosis struggle with psychological distress?ⁱⁱ

My heart breaks when I hear people describe themselves as disabled or being deformed when they have scoliosis, but after all—this is how our medical community and government have taught them to think. Quite frankly, it infuriates me.

At one of the Spiral Spine’s scoliosis workshops I taught, a female attendee utterly degraded herself by the words she used to describe her body and her scoliosis. She used words like disabled, ugly, weak, and broken. During the workshop I firmly, yet lovingly, confronted the verbal and mental abuse she was doing to herself. She had no idea she was twisting her words around to make herself feel worse and was so grateful to me for bringing this to light. I still keep in touch with her, and she’s dramaticaly changed her outlook on life and the actions she’s taking to increase her quality of life. All it took was one conversation.

I’ve seen people in the scoliosis community struggle with opioid addictions, suicide attempts, anxiety, depression, shame, and body dysmorphism. Parents of children with scoliosis carry heavy burdens of guilt which then leads to a host of bad parenting practices.

Just because you have scoliosis does not mean you have to be in emotional or physical pain. If you are, I urge you to seek help. At my studio and through virtual lessons, I physically train and mentally coach those who have scoliosis and their families that they are healthy, smart, and as capable of doing anything in life they want as anyone else on earth without scoliosis.

You don’t need to take my word for it though. I’m guessing you’ll be very surprised to see how many famous people have scoliosis.

• Usain Bolt—world’s fastest man
• Wendy Whelan—ballet icon and past principal dancer for the New York City Ballet where she had a 30 year career
• Yo-Yo Ma—world acclaimed cellist
• Princess Eugenie of York—British royalty and granddaughter of Queen Elizabeth II
• James Blake—tennis superstar
• Martha Hunt—Victoria’s Secret Model
• Hollywood actresses: Sarah Michelle Gellar, Shailene Woodley, Liza Minnelli, Laura Dern, Rene Russo, Naomi Harris, and Vanessa Williams

The interesting thing to me about all the people I just mentioned is that you very rarely hear that they have scoliosis. It’s not that they are ashamed of it and are trying to hide it (some of them, like Princess Eugenie and Martha Hunt, openly discuss their scoli), it’s just that they have learned to own it.

They are able to own their scoli because they have tried many different therapies and know what they need to do to stay strong, both mentally and physically. If you look into some of their scoliosis stories, you’ll notice that most of them use some form of specialized physical training to stabilize their spine and keep them strong—be that Pilates or personal training. By keeping their body strong, they’ve moved beyond their scoliosis to owning it so their scoli doesn’t own them.

Do these famous people still have scoliosis? Yes. No surgery or therapy will remove scoliosis fully from the body, and that’s OK. Be inspired scoliosis community. Scoliosis does not need to own you.

If you need help, mentally or physically, dealing with scoliosis, I’d strongly encourage you to view the resources I have created on Spiral Spine. There are many simple steps you can take to start helping your body and mind.

You are beautiful. You are strong. You are able—and scoliosis does not need to dictate your life. If you need help learning to own your scoliosis, my staff and I would love to help you, all you have to do is ask.

 

Sources

i. “Disability: Definition of Disability by Lexico.” Lexico Dictionaries | English, Lexico Dictionaries, https://www.lexico.com/en/definition/disability.

ii. Lee, Hyejung, et al. “Health-Related Quality of Life of Adolescents Conservatively Treated for Idiopathic Scoliosis in Korea: a Cross-Sectional Study.” Scoliosis and Spinal Disorders, BioMed Central, 31 Mar. 2016, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4900241/.