Out of Sight Out of Mind: The Problem with Hidden Disability Denial

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Photo credit: Aperture Yogi via Foter.com / CC BY-NC

Having never broached the subject of hidden disabilities before writing this article, I really wasn’t sure of the best way to approach it. Nor was I confident about the appropriate language to use having very little in the way of other articles to refer to. However, I was also very excited to share my story because, whilst diagnoses of dyspraxia (the hidden disability that I am affected by) is on the increase, it’s still relatively unknown compared to other specific learning disabilities. Until fairly recently, in fact,  children with dyspraxia were commonly referred to as having something called ‘clumsy child syndrome’—a rather simplified term to describe a complex and wide ranging set of difficulties.

The response I tend to receive when I tell people I have it is, ‘Ooh, what’s that?’ So, for those reading this who don’t already know, dyspraxia can be defined as a common developmental disorder affecting fine and/or gross motor coordination, as well as speech and language in both children and adults. For me it’s a condition characterised by awkwardness, muddle-headedness, and an inability to play group sports. And like all specific learning impairments, it also comes with its fair share of anxiety and embarrassment.

Like many people affected by specific learning disabilities, school was a bit of a challenging environment, made even more so (I can gather now) by a lack of diagnosis and appropriate support. Despite being good at English and the humanities throughout my school career, I have vivid memories of desperately trying to sneak a peek over the shoulders of those sitting in front of me in class, having failed to fully grasp the task at hand and feeling too scared to ask for help for fear of looking stupid in front of my peers. In particular, numbers were and still are my nemesis, proving so alien to my way of thinking that tears still begin to well at the thought of having to undertake anything more than very simple calculations.

However, as a rather hot-headed and rebellious teenager with a complicated home life, I never associated my difficulties at school with anything other than disengagement. It wasn’t until I began studying for my degree in English literature years later that I realised there may be something else going on. Whilst being fully engaged and working hard to complete my coursework on time, I felt completely overwhelmed by the workload and soon became aware that I was struggling more than my peers to keep up. At the end of my first year I sought out an assessment and was finally diagnosed with dyspraxia at the age of 26. As well as receiving a grant for specialist equipment, including a laptop installed with software to help with the planning, execution and revision of essays, I was also offered coursework extensions and extra time in exams. I strongly believe that without all of this access support I would have completed my studies with a grade well below my level of ability.

What people can’t see is the absolute dread I feel when faced with certain tasks and the big bully that lives inside of my head and tells me over and over how stupid, and incapable I am.

As an adult in full-time employment, the problem I’m currently faced with is how and when to disclose my difficulties to employers. Is it best to tell them at the interview stage so that they’re aware of my access needs, or should I wait until after I’ve been accepted for a position in case my impairments work against me somehow? Well, in my current role within the arts industry I decided not to say anything at all, until I was finally forced to disclose when my manager became frustrated and angry with the mistakes that I was making. Being invisible, dyspraxia has a habit of making those affected seem rather careless and lazy, and this can cause employers to doubt potential and, in many cases, withhold opportunities for progression. I can’t help wondering whether this would still be the case were it a visible impairment.

Part of the problem with having a hidden or invisible disability, whether it’s schizophrenia, chronic fatigue syndrome, depression, anxiety, or a specific learning impairment like dyspraxia, is that you don’t necessarily look like you’re experiencing difficulties. So, as well as people asking me to explain what dyspraxia is when I tell them I have it, another common response is, ‘But you don’t strike me as having those kind of issues.’

And here’s where the heart of this article lies.

Being articulate, well-educated, and able to hide a lot of my awkwardness and anxiety means that from the outside I often appear confident and capable. However, what people can’t see is the absolute dread I feel when faced with certain tasks and the big bully that lives inside of my head and tells me over and over how stupid and incapable I am. Whilst I understand that these insecurities aren’t necessarily unique to people with learning impairments, I’m certain that experiencing difficulties with tasks and activities that other people seem to find easy does magnify the feelings of inadequacy that I experience on a day-to-day basis. And, whilst I can also appreciate that most people don’t feel confident all the time, it’s clear to me that some individuals, including myself, are far more affected by insecurity than others, whether visibly or not.

The reason I decided to focus this article on the issue of hidden disability denial is that, as well as having personal experience of having to explain and justify my own difficulties, I have recently become aware of a wider belief—which seems to have roots in the wellness community—that specific learning disabilities do not actually exist. A few weeks ago I came across an article related to this theory, and it left me feeling pretty angry. The condition it dealt with was ADHD and (without going into too much detail) the argument it tried to put across was that most cases of the condition are purposefully misdiagnosed in order to generate money for Big Pharma through the dispensing of costly medical treatments.

Now, it’s very likely that there is an element of truth to this: we all know how much money and power is tied up in the pharmaceutical industry. But what I absolutely cannot get behind is the idea that so many health care professionals across the globe are implicit in this corruption, or that the majority of people diagnosed with ADHD are merely imagining their difficulties and the benefits of the medication that is prescribed to treat the condition. It’s true that the numbers of children being diagnosed and medically treated for the condition is on the rise (I’m not going to deny that medication being the first port of call is problematic), but rather than being wholly due to a money-making scam, this could also be because we now understand more than we ever have about the condition and are therefore more able to diagnose and treat it.

A shared experience amongst many of my friends is being told by their school teachers to stop being stupid and try harder in class.

This is of course an issue that will continue to be hotly debated, and I’m certainly no expert. But I strongly believe that if a child or adult is experiencing difficulties and has sought out a diagnosis then no one has the right to invalidate this by claiming that the condition doesn’t exist. A shared experience amongst many of my friends is being told by their school teachers to stop being stupid and try harder in class. Had more been known about the impairments they would later be diagnosed with this may have been a different story.

As well as invalidating the experiences of those affected by the symptoms of ADHD, the other problem with the article was that, whether intentionally or not, it implied that those who choose to take their medication are somehow implicit in the wrongdoings of the pharmaceutical industry. When asked, a close friend told me that after reading the article he felt guilty and ashamed to continue paying for and consuming his tablets.

Unfair as this invalidation is, however, my biggest problem with the article wasn’t so much to do with the implied misdiagnosis as it was to do with something far more insidious: the outright denial of the symptoms by which ADHD is commonly characterised. According to the author, symptoms such as lack of concentration, mood swings, hyperactivity, anxiety, and forgetfulness are not specifically related to ADHD, but a normal part of everyday life. What the article failed to grasp is the fact that it is not simply one or even a couple of symptoms that are experienced with ADHD, or any other specific learning disability. What is generally experienced is a complex set of mental and sometimes physical challenges that can have an enormous impact on an individual’s personal and professional life.

I can’t help wondering whether this article would have been accepted by the online community in the same way had it stated that wheelchair users aren’t really impaired and don’t really need their access equipment. Whether it’s a mental health issue, a neurological condition, or a specific learning disability, the impairments that hidden conditions bring can have an enormous effect on an individual’s quality of life. Rather than contributing to a positive and inclusive discussion about disability, articles like this openly discriminate against those affected by suggesting that invisible impairments are not as complex or as valid as those that are visible.

This is just one example of the many ways that hidden disabilities are minimised and invalidated in contemporary society. And without more open discussion on the subject this sort of denial is never going to diminish. The important thing to consider when thinking about this issue is that things are not always what they seem. A person may very well look and seem as though theyre managing, but this doesn’t mean they’re not fighting an internal battle.

A documentary exploring the nature of ADHD and the neurological affects of the condition is now available to view on BBC iPlayer. Those interested can watch here.

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Maddie is a freelance writer, and life-long lover of literary fiction, with a particular interest in feminism, social justice and contemporary culture.