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/.
Hi, I am a high schooler who has suffered from scoliosis since the age of 11. I wear a brace and may receive surgery.
I am pretty discouraged by this article. There was a prior comment by Ivy that talked about this post being ableist and I agree. This isn’t a personal attack but given your personal and professional experience, I am wondering why you do not think scoliosis should be classified as a disability?
Scoliosis is an invisible disability. Since 11 when I first had it, I didn’t take it seriously because I thought it was just another sickness. This made my curve worsen and when I got a back brace, I was ashamed to tell my friends. The back brace was heavy and awkward and you could see it protruding from my shirt. I had back pains that I didn’t take seriously, and I sweated under the plastic brace. I had to bring an extra bag to PE classes and sneak to the toilet to change. I was so ashamed because my disability was invisible and nobody took care of me. No one gave me a seat on the bus. If scoliosis was classified as a disability I could have gotten better accommodations and therapy (being uneven on both sides, my shoulders being weird, the sweat under my brace, the tension and pain in my back, my anterior pelvic tilt, these all made me feel so flabby and weak).
I understand where you are coming from, i really do. I have had thoughts about my body being worthless too. I think the points you make are good. No one, especially disabled people, should feel that way. However, you attribute this type of helplessness to scoliosis being seen as a disability. I argue the opposite. If scoliosis was treated seriously we would get better help and accommodations , instead our illness is treated like the flu and everyone still expects us to work like able bodies people. How would scoliosis not being a disability help us? We would struggle more. I think the type of apathy and self hatred you are describing can be attributed to the lack of mental healthcare and societal ableism. If scoliosis was more apparent, you wouldn’t be trying to make it a normal thing. I dont think we should be normalizing scoliosis because it is hard. Please don’t post ableist things because it can cause a lot of self hatred and trigger someone.
Hi Cathy,
Thanks for you comment. It took a lot of courage for you to share your story, and I see that and I’m proud of you for that. In your story I see that you’ve experienced a lot of shame, guilt, anger, sadness, and loneliness–and you’re still only a teenager. That’s a lot for you to have experienced.
I wish that I would say that your story is unique, but unfortunately there are millions of people just like you around the world who are experiencing the same exact thing. Isn’t that almost unfathomable! It’s been a hard thing for me to grasp too.
I truly believe that in most cases, receiving the label of “disabled” when having scoliosis is a choice. I would say that scoliosis is not an invisible disability. I would say it’s not a disability and that it’s also not invisible. Our emotional battle may be invisible, but our physical struggle with scoli is very much visible. Having the medical world label scoliosis as a disability (which many clinics and doctors already do all around the world) won’t improve how they care for us. I wish it would, but it won’t–and those that already take that title for their clinics haven’t improved their care. Many doctors and clinics take this diagnosis seriously–but it’s not treated well in my opinion, neither the visible or invisible aspects of the scoli are.
Choosing to take the title of disabled will only make our burden harder to carry, and our burden is already heavy enough. As a piece of inspiration for you, a friend of mine, Eva Butterly who has severe scoliosis in Ireland and is known as the “scoliosis warrior”, had to have her fusion removed due to inflection years ago. She just finished a non-stop 200K, which she had 40 hours to complete cross Ireland. Look her up. She’s SUCH an inspiration–and she does’t claim the title of disabled.
Blessings,
Erin
I agree with your points about how the language surrounding Scoliosis (ugly, deformed, weak, etc) can be incredibly harmful.
I am incredibly heartbroken by your words here though. this entire piece is incredibly ableist and only adds to the stigma that those with disabilities (and yes, scoliosis IS a disability, even by your own definition in the first sentence) suffer through. You imply that by admitting scoliosis is a disability you are weak and only thinking negatively. Having a disability is NOT a bad thing. Being “labeled” as having a disability is not a bad thing- as long as that label isn’t also using words like weak ugly deformed etc of course. but here you claim again and again that we shouldn’t think of ourselves as disabled – “My heart breaks when I hear people describe themselves as disabled or being deformed” – but all of your words only serve to make those people feel worse. It is one thing to say we should work on having a positive outlook, but you are implying that having a disability is a negative. it’s so ableist and harmful. Some of us are disabled. ITS NOT A BAD THING. And yes, scoliosis is literally a deformity- BUT THAT IS NOT A BAD THING EITHER. To say that that woman “degraded” herself with the word “disabled” is absolutely disgusting. I will agree that to say her body is ugly weak and broken is degrading- but a disability IS NOT DEGRADING.
and to discount the people who are seeking financial, physical, emotional help FOR BEING DISABLED, by saying that they are not, is so so harmful. Being disabled does not mean we stop seeking ways to improve our quality of life- having a disability does not mean we have given up or that we are weak.
DISABLED IS NOT A BAD WORD. Please come to understand this.
“ While I understand there may be people who are so affected by scoliosis that they are physically unable to work long-term..” – Im sorry, no, not “there may be”, THERE ARE. And it is not a bad thing to be disabled and require more support. we are not giving up.
“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.” – Your anecdotal evidence means nothing. Im sorry. but just because you have met a range of people with scoliosis and none of them (in your opinion) would fit the category of being disabled- DOESNT MEAN that you should spread this hurtful dialogue and make people feel worse about considering that they may be disabled.
I am so disappointed in the language used here.
“ it’s just that they have learned to own it.”
“theyve moved beyond their scoliosis”
yes we can work physically and mentally to feel better and manage better- but there is no moving beyond scoliosis. and to say that all it takes is some hard work is so ableist and shameful.
You are right- I am strong and beautiful. AND I AM DISABLED. Being disabled does not cancel that out. Please rethink the language in this post and the image at the start. Disability and deficiency should never be in the same category as any of the other words in that image, and you are only adding to the stigma with this language.
Hi Ivy,
Thanks for taking the time to write your thoughts. I have a few quick questions for you to help me understand where you’re coming from. How has scoliosis made you disabled? Do you have any other diagnosis? What is your curvature? Why can you not work? If you have pain, what have you tried to combat that?
I have had the privilege of working with and walking along clients young to old, small curves to 70 degrees plus, all different forms of fusion surgeries, those with multi-inch leg length discrepancies, multiple disc issues leading to nerve pain, spina bifida, multiple sclerosis, Parkinson’s, and the list goes on. I do no like any of the clients who come to Spiral Spine to refer to themselves as having a disability. It affects the psyche which leads to apathy, lethargy, anxiety, and depression.
Now, is having those issues shameful? Absolutely not. I totally agree with you there. Do some of those clients have handicap stickers? Yes, but none with simply a diagnosis of scoliosis–no matter what the curvature.
Blessings,
Erin
I have scoli in the neck (left side) and my head moves to its natural sitting point – tilted down and left so that my left jawbone is not visible. Everytime my neck muscles cramp up just from sitting, standing, especially walking and jogging, this occurs, and I offer resistance but the tension just involuntarily takes over and my head can’t look straight. I am thinking of getting a surgery/ something to help I can’t keep living this way especially since I still go to work 40 hours a week and stay positive, it is severe bend in the the neck and is bringing me down slowly overtime… every time there is an outburst when I am even around one person it is oblivious to ignore if I cant even look someone in the eye and get uncomfortable, this takes a toll on me mentally and socially.
Hi Drew, I’m sorry to hear about all that you’re going though. I can’t recommend to you enough to hold off on surgery, and instead find a great manual therapist to release all the bound tissue in your jaw. In the Starting Point Series I had a little video where I talk about what kind of therapist to look for. My neck, jaw, and head are very affected by my scoli, and I manage it all by movement/exercise and regular massages. Awhile back I posted an instagram post with one of my manual therapists working in my mouth and on my neck. Check that out–to know what to look for in a therapist. If your neck is really affected by your scoli, then I bet the rest of your spine is affected too (just an educated guess). If this is the case, how the rest of your spine moves will absolutely affect what’s happening in your neck. My staff and I would love to do a virtual lesson with you to figure out what’s happening in the rest of your spine if you’re looking for a guidance and a support team. You can always reach out to Spiral Spine (through the contact page or feel free to call) and we’d be happy to help you make a plan to improve the quality of your life. You don’t need to feel alone–there are people who can help you. I’m proud of you for reaching out. Blessings, Erin