Jack: The theme of this year’s UK Disability History Month is childhood and youth, and my colleague Lauren and I wanted to make sure we marked this.
We’ve both grown up with a muscle wasting condition and find it incredibly interesting when we meet someone with a similar condition and compare notes. What was the same, what was different. Someone will start telling you a story and you’ll get this odd sensation as you feel their experience connect with your own. It makes your own experience feel a bit less lonely.
With that in mind, Lauren and I felt it important to give our community an opportunity to share their experiences. We cannot say thank you enough to everyone who shared their stories in our survey. We have read every single one.
When we put the call out, we weren’t sure what would come back. What was surprising was how many people shared their experience of PE in school.
“I was always poor at PE and got bullied, no one ever wanted me on their team. I also struggled to keep up with my peers whilst swimming and I couldn’t jump hurdles. I was told I ran flat footed.” Emily living with limb-girdle
“Enforced to do cross country and sports days/PE.” – Anon
“I would get in trouble at school as I couldn't do the cross country or the bleep test as I just wasn't fast enough, but the teachers thought I just gave up too soon. I would slow my whole team down on the Duke of Edinburgh and I couldn't find interest in sport as I would be in pain.” Pedro, 31
“I was belittled at school during games by the PE teacher, he would stop the class for them to watch me try to throw the javelin etc. When I got a letter from my GP excusing me from games, he made me wash his car. His behaviour encouraged other boys to bully me.” Paul Mann, 74
“I was ridiculed by other students (and on a few occasions teachers) on the playground and in PE lessons due to my ‘funny run’ and terrible co-ordination. I would like to see better awareness and education amongst teachers and other childhood professionals.” - Charlotte, 33
This negative experience of PE is something that Lauren could also really relate to:
During my time at high school, I faced acts of inequality and discrimination through no fault of my own. The school was ignorant about my condition and refused to listen when my family and I tried to educate them on where they were going wrong. One experience still stands out, it was a PE lesson in the peak of winter, and it was freezing. Having a muscle wasting condition such as Spinal Muscular Atrophy (SMA) means your blood circulation and body temperature can be hard to regulate, leaving you chilled to the bone when it’s cold, and dealing with searing, long lasting pain.
I explained to my teacher that going outside would leave me in pain all day, and I would struggle to warm up and use my hands etc. I tried to do this discreetly, but I was brought in front of the whole class and told to “just put pants on”. I was arguing back and forth with the teacher, trying to explain why it wasn’t suitable or appropriate for me to be forced to join in. I ended up breaking down in tears in front of my classmates, before the teacher would listen.
It's so important that disabled pupils are listened to when they try to explain their condition and their bodies because this is the body we live in; we know it best. It is something I really advocate for now that I’m an adult who has experienced this and hope that disabled pupils nationwide get the support and adjustments they need in school.
If you’re reading this and you’re an education professional, the education section of our website might be useful to you, along with the eLearning Module. Children growing up with muscle wasting conditions deserve to be met with a curriculum that helps them flourish and thrive. Hopefully the above stories above can be a thing of the past.
It has been an absolute privilege to read everyone’s stories, and we cannot thank you enough. We will be sharing more about what you said across the month, so watch this space!