Not Every Disability Is Visible; I Have To 'Come Out' About Mine Daily

It is easier to understand something if it is visible. This is true for almost everything, but all the more so when it comes to disability. Through the hard work of activists, mental health is now more widely discussed, and serious reforms to provision are now on the agenda (the 2017 Conservative manifesto promised to give parity of esteem to mental health treatment in the NHS, for example). But there is a whole spectrum of other disabilities that aren’t perceptible to the eye, and remain unaddressed – for me, it’s a visual impairment. I often feel I have to “come out” to people as being visually impaired. People ask how I can still cycle around, do sport, or read off a screen. I don’t “look” like I’m blind.

This is because sight loss is not absolute; the recent #HowISee campaign by the Royal National Institute for the Blind details how 93% of those registered blind or partially sighted can see something. My condition, for example, means I have split vision, which only gets worse the more tired I become. My sight deteriorates both throughout the day and over the academic year, so as a student, by exams I spend a lot of the time acutely disorientated. Sometimes, I can struggle through, but when my vision fails to the point that I can’t see to read I go for a run, probably to prove to myself that even though part of me isn’t functioning, I can still push myself in other ways.

Those whose symptoms aren’t observable are often doubted or marginalised, but it doesn’t make the experience of the symptoms any less real. My impairment affects probably 75% of my day. University reading lists are intimidating for anyone, but for me to read the same amount and at the same rate as my peers is particularly daunting. Problems with my vision also spill over into my social life – the threat of what a hangover or tiredness will do to my sight often stops me going out with friends. What is often most problematic is the unrelenting need to justify myself, which can sometimes make life feel like a long series of academic and social excuses.

Mental health has long been treated in a similar way. Conditions like depression are frequently misunderstood and those who suffer from it are misrepresented as weak. The recent overturn of the government’s provisions of personal independence payments (PIPs) is proof that battles are being won. The policy was often found to discriminate against people with mental health conditions. This failed to account for the psychological impacts of mental health problems. Despite the relative progress of de-stigmatisation, the old trope that things must be seen to be believed still holds true.

Stickers which read “not every disability is visible” have sprung up on the tube and on disabled toilets over the last year. This is a good start to redefining disability, but we should go further. Whilst it is an important first step in educating people about the diversity of disability, campaigns shouldn’t just end with institutions ticking inclusivity boxes. This also holds true for the Tory promise on mental health spending, which remains unfulfilled. Symbolism is undoubtedly important, but we need a wholesale change in the way society approaches these invisible conditions. This is about open-mindedness, and ending assumptions. In the drive for changing attitudes on invisible disability, those whose physical symptoms are not evident – including visual, auditory and motor impairments such as dyspraxia to name a few – should not be left behind.

It’s not just problematic that people with invisible disabilities feel they must “come out”. It is that they must do so repeatedly. I’m privileged in that I get to choose as and when I disclose my disability, I “pass” as fully sighted. I don’t have any external visual defects, and I can navigate the world around me with ease a lot of the time. That sight loss is hidden, however, means it is all too easy for those I interact with on a daily basis to forget that it is something that affects almost every part of life.

I’ve had to make my condition visible to remind others of its presence. As my sight deteriorates throughout the day I find myself rubbing my eyes or blinking heavily, which doesn’t aid my vision nor give me relief but does at least make my experience seem more real to others. Through better education and effective campaigning, people could and should be reminded that those with invisible disabilities need support, too.

It’s one thing being defined solely by your disability, and quite another to be stripped of it entirely because you’re “not impaired enough” in the eyes of others. Disability is so often seen as a matter of degree, and I think my own struggle to define as disabled has been led by my own internalised misconceptions of disability. “Coming out” is a good place to start, but we must find a middle ground. We should make our aim the understanding and addressing of all disabilities, physical or mental, visible or invisible.