Content warning: ableism, invisible disability
“You don’t look your age” said the woman as she checked my passport. I explained that being of Pakistani origin, I age well. Being judged on how we look is something that happens to us all and it’s something we all do too.
Those judgements extend to every other part of our lives including disability, whether our disabilities are visible or invisible. When filling in application forms now, there is always a request to answer a question about your disability. I would never tick that box because I never saw or wanted to see my disability as real. More recently I have had a change of heart. Oh, the irony of writing these words — you will get what I mean as you read on.
When I decided I wanted to write, I was thinking about the topic from a selfish point of view. I saw it as therapy, as coming clean, sharing my darkest thoughts with you, the therapist. You see, I had a heart attack nearly seven years ago.
My heart attack came out of the blue, as I had not been complaining about chest pains to anyone. I was going to the gym, playing tennis and eating healthily. So, adjusting to having a stent put in my heart — a foreign piece of metal acting like a bridge keeping my blood vessel open — was difficult to accept for me and my body. All of a sudden, overnight I became a person with a disability but one that no one could see.
I have worked really hard to adjust my lifestyle, improve my health and wellbeing, physically, emotionally and spiritually, as I tried not to think of myself as being disabled. Partly because I was scared to share the diagnosis; I did not want the creative world to think that I was not able to do any work or that I might be unreliable. I have never not attended or missed work since my heart attack.
There was also the fear that if I shared my diagnosis, it would be real and I would be discriminated against. As an older woman of colour, who came into the arts later on in life and not through the traditional route, I have had plenty of barriers to overcome. I have also been in countless situations where I was discriminated against just because of the colour of my skin and I didn’t want to give anyone another excuse. Then there is the embarrassment of having a vulnerability. No one likes to feel vulnerable.
When I received the email to say that I was to write an article about invisible disability, I started to feel a range of emotions. I felt like a fraud. “I am not disabled” the voice in my head kept telling me. It’s not just me who thinks about my disability in the same way as I do; those close to me also feel the same. They do not see it as a disability. Perhaps it is more that they could not cope with me, their loved one, not being able to do everything I had in the past, to have a vulnerable side. The truth is, I do more than I did in the past, however, now I am more aware of my limitations and do not overstretch myself, physically or emotionally. It’s something everyone should reflect on and do.
There is then the mainstream view of disability which is negative, something to overcome, and links with the medical model of disability. The definition of disability, according to the Equality Act, is a physical or mental impairment or health condition that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
The social model of disability creates a new dimension, where it is society that disables and excludes people by creating barriers. Such as the lack of representation, negative attitudes and stereotypes as well as policies, procedures and social institutions. These barriers can feel like oppression and wrongly exclude, disadvantage or discriminate against disabled people. Add the colour of skin to that mixture as well as age and it’s ‘the full bhoona.’
Having a hidden disability is not just my domain, there are many, many different types of hidden or invisible disabilities. These can range from ADHD, asthma, autism, cancer, chronic depression, dementia, dyslexia… to ulcerative colitis and everything in between. Some disabilities may seem more obvious or well known, however someone could have a disability which can flare up from time to time, like multiple sclerosis (MS), and people have no idea it’s for life.
People with any kind of disability, hidden or visible, encounter ableism. If you feel like me, and you are at this transitional point of identifying as disabled, then do it in an empowering way. If you’ve had to deal with internal and external ableism, as well as racism, sexism and ageism (so many -isms!) then embrace the process.
I wonder if there should be a banner or flag that indicates to people that we have a hidden disability without giving away its exact nature. A bit like the way the rainbow flag that is instantly recognisable as the pride flag. However, there is the hidden disabilities sunflower symbol and lanyard. It’s not widely known about yet, but recently some larger employers are supporting it. Perhaps we need a marketing campaign to raise awareness of the Sunflower lanyard.
It might ease the pain of people, like my past self, who are too scared to admit their disability, or those like me now who feel it’s time to share and be accepted for who I am, not what happened to me. Perhaps it’s time to have a national conversation about hidden disabilities, one I would be very happy to be part of.
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I have been writing as long as I can remember. Keeping a diary from a young age and writing plays at primary school about rescuing Humpty Dumpty. Recently I have written serious and funny opinion pieces for a variety of broadsheet newspapers, online magazines and also my first play Tickbox.