Positive Health Online

I’m a Personal Trainer and I have scoliosis. I’ve been living with this condition since I was 15 years old and have been through the ordeal of  three spinal fusion and rib surgeries. My body looks straight enough to the untrained eye but for me I know my spine isn’t like most people’s.  My spinal journey has brought up loads of insecurities both physically and mentally over the years. I’ve been able to let go of some of these feelings with incredible family and friend support but have also picked up a few new insecurities along the way.  Fear of showing my scar has been overtaken by my wonky waist as my lower vertebrae, which luckily for me are not fused, take a lot of extra pressure resulting in some wear and tear of the discs and the worry that they may collapse with age.  

Caption: Scoliosis is a curvature of the spine in an S shaped form

https://www.scoliosishandbook.com/

Emotionally the toll on mental health for many with a curvature of the spine is a struggle.  Some would argue scoliosis is a disability.  Certainly it can be, depending on the severity and how much pain and discomfort a person is in.  This brings me onto the topic of ‘Scoliosis Descriptions’ and name calling.  Would you ever consider calling a disabled person a cripple or spastic or any another other derogatory term? It appears to many of us (I have discussed this topic with my scoliosis clients numerous times) that Scoliosis name calling is an acceptable form of prejudice towards people with a curvature of the spine.

In response to an article I read recently in a national newspaper, I thought that I would share how it feels to be labelled “deformed”, a “hunchback” or even worse “Quasimodo”. 

I woke up a couple of days ago, chilling in bed having hit the snooze button, scrolled through the news threads and clicked on an article about improving bad posture. Oh I thought, this could be both helpful and informative. It was anything but…  In the article references were made to both the latter descriptions above.   I Immediately wrote on their comment thread the following:

“Misleading – your description of people suffering with curvature of the spine is mentally unhelpful. I write about Scoliosis and exercise. I’m still astonished that journalists as well as others think it’s ok to use the words “hunchback” and “Quasimodo” relating to spinal issues. As if it’s acceptable to use degrading language you would quite rightly not use to address people with other physical conditions.”

I was initially irritated and sat for a while contemplating my emotions.  How the description made me feel and how others see me.  It brought back the times people have made jokes about ‘The Hunchback of Notre Dame’ and how they would then look at me and say ‘Oh we don’t mean you!’

It ate into all my insecurities. Though I am an exercise professional specialising in scoliosis and have used my experience to keep up positivity over the stigma some assume the condition to be, words are still hurtful, even to me.

Then a couple of weeks ago on The Times online 31/01/2024 I read that The Globe Theatre has been embroiled in a row over Michelle Terry, who does not have scoliosis, playing the part of Richard III who historically was confirmed to have a very obvious ‘S’ shaped curvature of the spine.  There was such a hoo-ha from disabled performers, likening this to “Blackface” and I do get it.  However, having trained in acting as a child and through my teens I was always under the impression that ‘acting’ meant you played someone who isn’t you!  Also as Tomiwa Owolade pointed out in his response to this article on The Times online 05/02/2024. 

…”we should provide more opportunities for disabled actors”.

Michelle Terry stated

“I acknowledge that for many, Richard III is an iconic disabled figure,” she wrote. “I understand that this feels like a missed opportunity for a disabled artist to play a disabled character on a major UK stage, but it will come around again.”

She is now playing Richard III without his scoliosis.

I am currently advising another playwright on the movements of a character who has scoliosis so an able bodied actor who has a straight spine may play the part.  She will also audition anyone who has a disability and hire the best person.  I agree with Tomiwa Owolade’s view that we just need more parts available to disabled actors.  I have always wondered where our physically disabled community are when I watch long running soap operas, detective series, news programs, movies etc. and why they have been mainly hidden from the world.   Why are they not fairly included in presenting and acting roles?  This reeks of inequality and bias.  When it comes to characters with scoliosis (AKA Hunchback by directors) why is it that we are looked at as narcissistic, miserable or nasty characters.  There is not one character I can think of who is a ‘goody’ or really happy and successful who has scoliosis.  

This is my example list to prove my point:

Richard III, Shylock in Merchant of Venice, Quasimodo in The Hunchback of Notre Dame. The Wicked Witch in Snow White and Red Riding Hood are sometimes depicted with scoliosis and there are a few sad films, but little (except Elsa in Frozen) showing how incredible many with my condition actually are.

During the Johnny Depp/Amber Heard trial I just fixed on his nasty words likening Heard to a hunchback, which not one journalist picked up on.  Had he thrown out other physical insults, say about her size, there would have been an outcry.

Jasmin (not her real name) writes 

“My experience was most of my school life being called that! (Hunchback) Language is interesting, In terms of disability, no medic has ever said I have a disability. One of my parents wrapped me in cotton wool and the other was like you have a health condition you manage. As in you can do anything, you just may need adjustments. I have been described at work by HR as disabled when going through a job review. Also strange as you would never tell someone what race, gender etc. they are. Very odd experience someone else choosing your protected characteristics. These days I describe myself as having a hidden disability. Which enables me or disables me in different situations. It kinda talks to the theories around intersectionality”

Joaqui @extremescoliosisaurvivor writes

“When I was sorting my Instagram name I searched hunchback,  I was feeling particularly angry and wanted to find an ugly name to hit home, not very mature but that's how it gets me sometimes. That's when I found all the names.  I just googled and a certain publication has done quite a number of articles relating to hunchback as a very derogatory term. I hate the word. I had meant to call them out over the one to do with working from home but then it takes me all my time  to get through a day that I am too exhausted and forget.”

 The Scoliosis Handbook of Safe and Effective Exercises Pre and Post-Surgery

by Caroline Freedman

https://www.scoliosishandbook.com/

Published by: Hammersmith Books. 2020. £12.65 / $15.96   ISBN-13: 978-1781611661.    

Available from Amazon.co.uk  and  Amazon.com and Hammersmith Books.

Unfortunately, whether intended or not, the common portrayal of scoliosis equalling a negative character in film and TV has resulted in a high level of insecurity, especially in young teens.  The constant depiction that bad characters have a curved spine leads us struggling with scoliosis to a self-fulfilling prophecy that we are less.

There are however some celebrities that counteract that notion and bring back the positivity I am trying to promote.  These people, such as athlete, Usain Bolt, model, Martha Hunt, film, Naomie Harris and royalty, Princess Eugenie show not only those struggling but everyone having scoliosis can be positive, beautiful, talented and kind.  They are true #scoliosiswarriors. I hope that through my writing and keenness to raise awareness I can call myself a #scoliosiswarrior too.

Disclaimer Note

This article is not intended to be a substitute for professional medical advice or diagnosis. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition

Picture Credit

Caroline Freedman Headshot image: Sam Pearce - www.square-image.co.uk – Image courtesy of Scoliosis Association UK