The Problem with Ableist-Driven Narratives: Why I Don’t Feel Lucky as Someone with a ‘Mild’ Disability
By Gemma Wynton
If I Was As Lucky As People Said I Was, I Would Be Able-Bodied.
There is a huge problem that those of us with ‘mild’ or ‘invisible’ disabilities are forced to deal with, and it is a problem that has followed me throughout my life. The problem? People like me are told that we are the ‘lucky ones’ when compared to those who are in wheelchairs, to those who require more physical aids, or to anyone with a seemingly more severe form of our condition.
When I was growing up, there was a girl in my year at school – let’s call her Poppy – who had Cerebral Palsy just as I do. Poppy was in a wheelchair, had to use a walker to help her walk independently, and – among other things – looked completely different to me, even though we were diagnosed with the same condition at birth. Watching her, I felt a strange connection to her. Yet her experiences were so different from mine, and because people often told me how lucky I was compared to her, I distanced myself from her completely. I could have been friends with her. Actual friends, rather than the pitying classmates she was always surrounded by at school. I could have learnt a lot more about myself and had a friend with shared experiences of my disability at a far younger age. It’s hard to say if this would have been more or less beneficial to me, but I do feel like I missed out on a lot as a result of distancing myself. Cerebral Palsy turned me into an extremely lonely individual.
This ‘lucky’ narrative that I am referring to often coincides with narratives such as ‘differently-abled’ or ‘see the ability in the disability’ – narratives that I believe have good intentions but that I really don’t believe are true. In my experience, I have found these ableist-driven narratives to be invalidating and emotionally neglectful.
Just Say ‘Disabled’– It’s More Validating Than You Might Think.
By saying this, I do not wish to generalise; the disabled community is extremely diverse, and each individual’s relationship with the word ‘disabled’ varies. However, from being a part of the disabled community (most notably on Instagram), I have seen a lot of accounts that are reclaiming the word ‘disabled’ as opposed to ‘differently-abled’, ‘handicapped’, or any other word used to describe someone with a disability.
I understand where people are coming from when they use these other words. From an able-bodied point of view, they are meant to liberate disabled people, meant to make us feel seen and included, meant to make us feel capable. However, what these words really do is minimalise the disabled experience in both an able-bodied perspective and a disabled perspective.
Growing up, I never heard the word ‘disabled’ as a label for what I was (and still am). Hell, I never heard the words ‘Cerebral Palsy’. Instead, I was told that I had a ‘slight weakness’ in my left side, or that I walked with a ‘slight limp’. I don’t know about you, but a serious brain injury as a premature newborn that resulted in two life-saving operations, and a childhood riddled with doctors’ appointments, physical therapy, and countless AFO braces, is hardly a slight weakness in my mind.
I understand where people are coming from when they say that I am lucky. So much could have happened to me when I was a baby, and it was undoubtedly a terrifying time for my family. The nature of Cerebral Palsy means that its severity is only revealed as the child develops. As a result, doctors have to tell parents the worst-case scenario to ensure that everyone is properly prepared and informed. So, a ‘mild’ diagnosis, meaning that despite my disability being physical it is largely invisible to people who don’t know that I have it, would have been a relief for my family.
People Forget That Children With Cerebral Palsy Grow Up To Be Adults With Cerebral Palsy.
Everyone in my life who has minimalised my disability has meant well and has done so without knowing the harm it has caused me. I want to make that clear. But the real challenge of Cerebral Palsy (specifically) comes when you grow up – when you are discharged from the Children’s Department of your local hospital and released into the world.
Cerebral Palsy is the most common childhood disability, with an estimated one in every 400 babies born in the UK developing Cerebral Palsy before, during, or shortly after birth. That’s around 1,700 babies with Cerebral Palsy being born in the UK every year. That being said, there is a shockingly small amount of research dedicated to exploring the long-term impact of Cerebral Palsy, i.e. what it’s like to be an adult with Cerebral Palsy.
Nearly 75% of people with Cerebral Palsy have Chronic Pain, Chronic Fatigue, or a combination of the two. In fact, those of us with Cerebral Palsy use three to five times more energy than our able-bodied peers. That means that moving, working, and just functioning day-to-day is at least three times more exhausting and at least three times more painful. As a result, being an adult with Cerebral Palsy means that everyday tasks like house chores and day-to-day living takes more of a toll on our bodies. And that’s outside of working 9 to 5, five days a week. Not only this, but the tightness in our muscles and deformities such as hip misalignment can mean that we are more likely to develop other conditions later in life. For example, adults with Cerebral Palsy are one and a half times more likely to develop osteoarthritis.
When You Take Away The Reality Of It, You Take Away The Individual’s Ability To Cope Both Physically And Emotionally; You Also Take Away Their Ability To Advocate For Themselves.
Let’s also talk about the emotional and mental effects of Cerebral Palsy. It has been found that people with Cerebral Palsy are five times more likely to be diagnosed with a psychotic disorder, two to three times more likely to develop mood disorders such as depression, and are one and a half to two times more likely to have anxiety.
Why is this? There are many reasons. For me, the main contributing factors are the fact that I have had to self-educate about my disability, and that I have had my experiences minimalised because my disability is ‘mild’, constantly being compared (and therefore invalidated) to those with a more severe form of disability. It has also been overwhelming to go from feeling capable as a child, to an adult with chronic pain and fatigue. Adjusting to that was difficult. I have had to seek more medical help in the past few years because of this, help that I was told I would never need and that was never mentioned as an option for me.
I Don’t Feel Lucky.
I understand that I am privileged. As a white woman with a ‘mild’ diagnosis, there are lots of things that I can access that others cannot. However, I experience chronic pain and fatigue every day; I have felt alone for much of my life, and I am still trying to work through aspects of emotional harm that I have experienced as a direct result of having Cerebral Palsy. I have anxiety and depression and I am working hard to get the help that I need for that too. I have grown up without the language to be able to talk about my disability – I didn’t even know that what I have is called Cerebral Palsy until I saw a parent write it on a form for school.
A lot of what I know now and the confidence that I have surrounding my disability (though this is still a work in progress) has been a direct result of finding the Cerebral Palsy community on Instagram, constant google searches (which, trust me, were not all positive) and advocating for myself and being persistent when addressing my new-found pain and fatigue to doctors (which went down well when I moved to university, so thank you to everyone at Bath Spa University and all my doctors and physicians at the Royal United Hospital in Bath).
I am many things, but I am not lucky. I have experienced too much pain, invalidation, fear, hurt, and frustration to consider myself that. Disability sucks, no matter what form it comes in. Mental health struggles suck, no matter what behaviours you do or don’t engage in, or whether you suffer with panic attacks regularly or not. You do not come out of a brain injury lucky. You will experience some form of suffering because of it, no matter how ‘mild’ or ‘severe’ it’s labelled.
I have listed some resources below for those who are looking to engage with the community:
@KreationsByKittles on Instagram
@teya_in_training on Instagram
@CerebralPalsyStrong on Instagram
@Nicola Claire on Instagram
@Kimberley Hamilton on Instagram
@Nina_tame on Instagram
Scope (UK disability charity)
The Cerebral Palsy Foundation
Chloe Tear (award-winning disability blogger & freelance writer) Seriously, subscribe to her blog, she’s great.