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Why is Representation Important for Young People with Scoliosis?

When the toy company Mattel launched the first-ever doll with scoliosis and a removable back brace a couple of years ago, I must admit I was genuinely and positively surprised. I was even more impressed when the global fashion retailer ASOS featured models with scoliosis in their e-commerce photos, boldly showcasing their visibly curved spines and post-surgery back scars.


Although my own journey with scoliosis — including years in a back brace and a spinal surgery — is now well behind me, I found this recent increase in visibility truly empowering. This sentiment was echoed by many others with scoliosis, who praised these brands in the media for challenging traditional beauty standards and celebrating diversity.

Image by Mattel
Image by Mattel

As these examples show, the representation of scoliosis has gradually increased in the past few years. Celebrities like Princess Eugenie as well as models like Martha Hunt and Emm Arruda have proudly shown their scoliosis scars on public occasions, whether at royal weddings or major fashion runaways, advocating for greater awareness and visibility. Likewise, many people outside the spotlight have started sharing their scoliosis journeys on social media, fostering a sense of community and belonging. As such, for Scoliosis Awareness Month this June, I wanted to reflect on why representation matters and how it can support the mental health of young people with scoliosis.


What is Scoliosis?

Scoliosis is a condition where the spine curves or twists to the side. It can affect people of any age, but it is most common in children and adolescents, affecting approximately 3% of them globally.

Depending on the severity of the spinal curvature, scoliosis can result in a variety of physical differences, such as a visibly curved back, uneven shoulders or hips, and a prominent ribcage. People with severe scoliosis may need treatment to prevent a progression of the curvature; this can include wearing a rigid back brace or a cast and, in a minority of cases, surgery (called spinal fusion) to straighten the spine. However, people with mild spinal curvatures often do not need any treatment.


While scoliosis is unlikely to cause any severe or long-term physical health problems, especially if detected and treated in a timely manner, it can have long-lasting consequences on young people’s mental health.


How does Scoliosis Affect Young People’s Mental Health?

Living with scoliosis can be particularly challenging for young people who already face the typical challenges of adolescence, such as peer pressure, puberty and changes in physical appearance.

Research has shown that young people with scoliosis are at increased risk of mental health conditions, including anxiety and depression. These psychological difficulties have been linked to the practical and social challenges of living with scoliosis, such as disruption to daily activities, feelings of loneliness and isolation, as well as worries about treatment. These struggles have been vividly captured in qualitative literature exploring the lived experiences of children and adolescents with scoliosis, as reflected in their own words:

“I had to stop training, and when I could take it up again it felt difficult. The team had grown so much better and I was left behind” 
“I don’t know many people with the same condition, sometimes I feel a bit lonely”
[referring to their upcoming surgery] “I was scared of being paralysed and not being able to walk again, to sort of have to be bound to a wheelchair”

Additionally, adolescents with scoliosis have been shown to have lower body image satisfaction and self-esteem compared to their non-affected peers. These have been suggested to be due to the visible physical differences caused by scoliosis, such as uneven shoulders or a curved back, heightening feelings of self-consciousness about physical appearance and a sense of being different from peers. Treatment can further exacerbate these feelings; indeed, wearing a bulky back brace or having a long scar can act as constant reminders of one’s differences at a time when fitting in seems to be essential. These challenges have also emerged in the qualitative research mentioned above:

“When we were all getting in our swimsuits and going to the beach and all that… I didn’t want to get into my swimsuits because my body didn’t look right”
“I was worried about the brace being visible under my clothes and I didn’t want to go outside the house, not even to have fun”
“I cannot visit a swimming pool or go to a beach because I don’t want anyone to see the ugly scar, and I don’t want anyone to touch it or ask about it.

 

As this evidence shows, scoliosis can take a profound emotional toll on young people — so, where does representation fit into this picture?


The Important Role of Representation

Representation can support the mental health and wellbeing of young people with scoliosis in many ways. Firstly, visibility can promote body positivity, ease body image concerns and boost self-esteem. According to the Social Identity Theory our sense of identity and self-esteem are deeply influenced by how we see ourselves in relation to others. For young people with scoliosis, seeing others with the same condition — be it a model proudly showing her back scar or a peer confidently wearing a back brace — can make them feel part of a valued and accepted group. This sense of belonging can normalise their physical differences and empower young people to embrace them with confidence.

Images from ASOS
Images from ASOS

Representation can also promote the development of supportive communities where young people can connect with peers facing similar challenges. With celebrities opening up about their scoliosis, many young people have followed suit — sharing their journeys through personal blogs, social media platforms, and online support groups. These peer support networks allow young people to share their experiences with others who understand what they are going through, reducing feelings of loneliness and isolation. These platforms can also provide reassurance, especially around common worries like wearing a brace or undergoing surgery. While it is important to approach information on the internet with caution, hearing from others who have navigated similar journeys can offer validation, comfort and practical insights.

 

The power of representation extends far beyond raising awareness and visibility; it creates opportunities for self-acceptance, connection and support. While this can’t brush away the struggles that come with living with scoliosis, it can help young people feel less alone in their experiences and empower them to face these challenges with positivity, confidence and pride.


Although 15 years ago I found my own path to accepting my body, I sometimes wish this representation had been around then, and I find it uplifting to see it happening today for the young people who need it the most.


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