When I was nine, I saw a monkey puzzle tree for the first time. I was staring back at it across the road whilst walking fast to catch up with my mum. Suddenly, I felt the impact of a lamp post.
It turned out that this accident had damaged my nerves, and I had my first epileptic seizure the next afternoon.
As a result of this trauma, my face began to change, getting smaller on one side. Two years after the incident, I was diagnosed with Parry-Romberg’s Syndrome.
It meant the tissue and muscles had all stopped growing on one side and were shrinking. It’s an incredibly rare condition and there is no known cure. I was recommended surgery, which involved inserting tissue, muscle, fat and bone from other areas of my body into my face. I was in an all-girl’s secondary school and worried about how people would react to my appearance after the surgery, as many of my peers were beginning to become aware of “beauty”.
The surgery left me with bruises all over my face. My mum bought me some foundation to try to cover them, but I found that the skin on the Parry-Romberg’s side wouldn’t absorb it. This made it difficult for me to fit in with other girls, as many had become interested in make-up.
My Parry-Romberg’s Syndrome also affects more than my face, impacting one entire side of my body – my standing stance is therefore a side slump. It has other symptoms in addition to epilepsy and tissue and muscle wasting. These are spinal problems, in my case three worn vertebrae causing chronic thoracic pain and muscle spasms.
I hope to show the world #ThisGirlCan when people assume I can’t!
I’ve had a few different procedures over the years. Nothing has worked, and I’ve been left with post operation scars all over my face and body, as well as burns from seizures when cooking. My surgeon also had to remove my front tooth and the one next to it as they were loose due to the hip bone in my face disintegrating over time.
People often stare and it makes me self-conscious of being photographed. It took me years to build the confidence to be okay seeing myself in a photo and speaking to an audience and on camera for my work in politics.
Building my confidence involved regularly taking myself out of my comfort zone. I learnt how to stand properly when speaking, ensured I give eye contact, and voiced my concerns about my condition to photographers. I was never going to let my visible difference stop me from living my life.
I’ve jumped out of a plane despite chronic thoracic pain, muscle spasms, epilepsy, and severe asthma. I’ve got myself elected, creating housing policy change as an Independent Councillor and making a difference for Borough residents who are full-time carers. I’ve also abseiled down the Broadgate Tower for the Epilepsy Society and become an Epilepsy Action Trustee. These are just a few examples of what I’ve achieved.
Avril abseiling down Broadgate Tower
I will keep campaigning for all disabilities, inclusion, equity and accessibility. I hope to show the world #ThisGirlCan when people assume I can’t!
However, while I’ve been able to grow my confidence and take control of how people view me, carving out a successful path for myself, there are certain experiences I’ve had which have taken me back to a place of vulnerability. The journey of having a visible difference is rarely linear, and no matter how much you’ve worked on self-acceptance, sometimes the behaviours of others can bring your insecurities flooding back.
People’s attitudes towards me seem to change depending on what job role I’m in. Voluntary sector roles have been great, and I’ve got on well with board members who have treated me with respect. On the other hand, while I’ve been successful in paid roles, I never seem to be able to get the head office positions I know I’m capable of having. It makes me wonder about how much of an impact my visible difference has when it comes to these recruitment decisions.
Some colleagues in politics and people who I thought were my friends have also side-lined me and excluded me from group videos and photos, which has cut me particularly deep. One true friend told me that it was because of my facial asymmetry.
I would tell my younger self that she will make many precious memories that brighten the darker days, and that she will achieve more than people ever thought she would or could.
A career in politics is challenging to most already, but add a visible difference to the mix and it can become a nasty environment to be in. As my ability, activism and popularity increased, my image was used more and more, and sometimes pictures were chosen without anyone checking my approval to use these. I’m very aware of public perception, so I’m careful with the images I choose because of the judgement that I might face. To have this choice taken away was not only hurtful and insensitive, but a lack of due regard for my protected characteristics. While I’m resilient, when you’re reduced to a picture on a leaflet, being able to decide how you’re presented is so important and campaign managers didn’t want to consider and change this when I brought it to their attention. Losing this control over how the wider world viewed me was upsetting. Nevertheless, I continued to power through, making positive change as I went.
While it’s great to see more people with visible differences getting opportunities to be in the public eye, I still don’t expect that I’ll ever get equity or equal opportunities because of the way I look. The media continues to condition people into accepting their stereotypical concept of beauty, instead of letting beauty be in the eye of the beholder and allowing unique qualities to shine. I hope this will change.
I wish people and employers would open their minds and see talent, experience, knowledge and the unique qualities in me and others with a visible difference, instead of quickly deciding that we don’t fit with their vision.
My journey includes many lows, but also a lot of highs. If I could, I would tell my younger self that she will make many precious memories that brighten the darker days, and that she will achieve more than people ever thought she would or could.
Don’t try to fit in. Be true to yourself and find happiness and peace with who you are; “Que Sera Sera”, as my mum sang to me.