‘Jumping the queue!’ a man waiting outside the theatre doorway shouted as I was wheeled to an accessible side entrance by a steward.
This was pre-pandemic, in 2018, and the man presumably believed I was gaining the upper hand because of my inability to climb stairs.
It’s just one example of hundreds of ‘joke’ comments that passers-by regularly seem compelled to share with me as a person with a disability.
Every time they happen, I feel jolted by the shock of hurt, leading to an all too familiar scenario where I’m simultaneously made to stand out from the crowd, while at the same time deemed invisible and unwelcome.
I was diagnosed with Limb Girdle Muscular Dystrophy 24 years ago, at the age of 19. This genetic, degenerative muscle-wasting disease causes extreme weakness and gets worse over time.
The way it feels to live in my body is like the experience that a non-disabled person might have if they were carrying a brick-filled backpack that is pulling at their neck and weighing them down, while trying to walk up a sand dune against a strong wind.
This is the level of weakness, fatigue and pain I battle every day.
Because of my physical needs, equipment plays a huge role in my life. From Brian (my scooter) and Speedy (my ‘granny walker’/rollator), to my stairlift, crutches, automatic car with blue parking badge and manual wheelchair, these are the visible parts of my disability that often attract unwanted attention.
Almost every time my husband, son and I go out for a countryside ‘walk’ – using my off-road mobility scooter – someone will say something like, ‘I could do with one of those’. I generally respond with my now well-practised reply of: ‘OK, let’s swap. You can have my scooter and my disability and I’ll have your healthy legs’.
I’m no longer surprised by these almost weekly encounters, but each interaction comes at a cost.
My work as a psychotherapist has taught me that it’s not only life’s large-scale suffering, losses, abuses or events that can lead to traumatic responses, but also the persistent, continuous exposure to subtle discrimination that can result in symptoms commonly associated with low level trauma or PTSD.
Quite honestly, I’m exhausted with these microaggressions and I’m tired of finding ways to ‘manage’ them. I’m weary of trying to avert the projected pity, ignorance and thoughtlessness that I encounter when, frankly, I’m already more than exhausted simply trying to cope with the daily exertions of my disability.
A little while ago, something in me shifted and I realised that if I didn’t do something constructive about it, then I was in danger of losing it with the next person who made a seemingly ‘innocent’ comment.
I needed to use my sense of helplessness and anger to produce a creative response that I hoped might initiate a conversation about the often unintentional – and yet still very real – impact that these comments have on people in the disabled community.
So I took a number of selfies, holding up placards with comments that I’ve experienced over the years. ‘You disabled drivers get all the best spaces!’; ‘Your health is your greatest wealth!’; ‘Can she stand?’; ‘But you look so well!’; ‘Look at those wheels! That’s cheating!’ I then shared these with the world by posting them on social media.
One acquaintance commented that the photos were ‘taking things too far’ because ‘people are just trying to be friendly’, adding that ‘everything has become so PC, it gets to the point where people are scared to say anything at all’.
But I’m afraid that argument doesn’t wash with me. It points to an unwillingness to grow, listen and learn.
As a white, middle-class, cisgender, (fairly!) straight woman, I still have a huge amount to learn about race, sexuality, class and gender, and I want to keep learning where my many blind spots are. I also hope I’ve got the humility to change when they are shown to me.
Likewise, that’s all I’m asking for in response to my photographs: to initiate a dialogue about disability, an openness to ask questions, a receptiveness to our stories, a desire to learn and a willingness to change when necessary.
This is where the incredible charity, Muscular Dystrophy UK, has stepped up to the plate, and has helped me get these photos out there.
Their media and communications team picked up on my photographs on social media and believed that their message was important so we worked together on a press release and the story has garnered a lot of interest.
The charity provides support and advocacy for patients, funds research into muscle-wasting conditions, campaigns for change, and is also heavily involved in raising awareness of important issues.
It is also a significant part of my life, particularly my relationships with many of the staff who work for the charity.
They have encouraged me with volunteering, advocated for me when struggling with Department for Work and Pension (DWP) forms and the like, and pointed me in the direction of various types of help and support over the years.
MDUK are fantastic at bringing people together and helping us to feel less alone.
I hope my photos will go some way to help reduce the sense of isolation that many within the disabled community feel.
I want them to encourage us all to learn, face our prejudices and ultimately reduce the stigma that so many people with disabilities experience every single day.
Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk.
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