Hazel writes about experiencing feelings of ‘not being disabled enough’ and the effect this has on disability identity.
When growing up I essentially learnt that “disabled” only really meant physical things, in fact mainly visible ones. Disability was discussed as something to pity, as something that you could see, something that was obvious and could not be hidden or invisible. Of course this isn’t the case, but it is what I believed as a child because that’s what the people around me seemed to believe.
So here’s the thing… to look at me I appear to be a “normal” person in their 30s. Visibly there appears to be nothing wrong with me, people may notice I’m wearing earplugs or headphones at all times, or that I wear sunglasses when indoors, but for all intents and purposes I look “normal”.
The reality though is that I am not. I am autistic, and I have ADHD, anxiety, an auditory processing disorder, plus psychosis.
I see things others don’t, I hear voices, I get paranoid and scared about things totally within my own mind. I can’t be in loud or bright environments as I may have a meltdown. I can’t sit in meetings for long without a need to move. I can’t understand what people are saying unless I can see their face, can’t look people in the eyes or shake their hands. I can’t understand sarcasm. I can’t hold down a job for long, can’t look after my house, can’t pay bills on time… Basically I cannot function in the way that an adult should.
But physically I am fine, visibly I am fine, so surely I cannot be disabled right? No, I am just lazy, disorganised, weak, and an array of other negative terms.
Here lies the imposter syndrome… I can walk, I can speak (most of the time), I can see, and I can exist in many spaces where physically disabled individuals cannot. I feel I’m not well enough to be “normal” but don’t look disabled enough to fit into that space either. It’s like being in some sort of limbo, existing between the binary.
These feelings are then reinforced when I attempt to get accommodations to make my life easier and I get knocked back over and over again. Have to fight to prove my difficulties, have to explain to employers, to educational institutions, and even to the government (DWP) over and over that, yes my problems are real, yes they do affect me every day, and no, I will never be “cured”.
After a while of society constantly doubting you then you start to also doubt yourself, to start to believe that maybe you are just not trying hard enough. It’s frustrating and confusing because no matter what I do my neurology is my neurology and I am never going to be able to change it, but if society doesn’t want to help me then I am basically stuck, still trapped in this limbo between the two apparent binaries.
When I first joined YDRF, this fear of not being “disabled enough”, or not being the “right type of disabled” continued. I was so scared that I wouldn’t be accepted, that the other members would be looking at me and thinking “why are they even here?” because, as I say physically I appear to be fine.
But, my fears were totally unfounded. No-one has judged me, no-one has dismissed me, in fact people have taken my ideas and thoughts on board just as they would with any other member.
I am still scared about doing activities outside of the Steering Group meetings and not being taken seriously as a representative because I don’t look the way society imagines a disabled person to look, but I am working on it. I’d like to imagine that this fear is completely within my own mind and that society has moved on from when I was a child where “disability” basically meant being in a wheelchair, being blind or deaf, but I am not sure that it has. There’s this image that society has created, expectations that have been formed about what disabled or chronically ill people are supposed to look like. Even though this image is not correct it is very well ingrained in many people’s minds.
This feeling of imposter syndrome can be very difficult to get past, it’s an awful feeling and can also be extremely isolating. One thing that helped me to come to terms with the idea that I am, in fact, disabled, was looking into models of disability beyond just the medical model. This is something I would encourage anyone who is doubting their own status or who feels trapped between the two binaries to do. Another thing that can help is taking the leap into disability spaces, discovering just how varied and diverse disability is and being accepted into these spaces can really help with not only the imposter feelings but also with self-acceptance.