What’s it like to live with a non-visible disability?

I remember it quite clearly. I was standing before my classmates. In front of me, a substitute teacher was upbraiding me on the scruffiness of my handwriting and the laziness of my work. Such public embarrassments were not uncommon at my school. I attempted to quietly explain that, some years before, at the age of 9, I had been diagnosed with dyspraxia.

Dyspraxia, more properly titled “developmental coordination disorder”, is a neurological condition affecting both gross and fine motor control, with additional effects on memory, speech and sensory processing. In my case, it mostly expresses itself as difficulty writing by hand and spelling, trouble expressing thoughts clearly and the occasional embarrassing Spoonerism in speech. I was never going to make it as a concert pianist, nor play for England, but who does?

The teacher in question refused to accept my explanation, and continued his tirade. A few of my classmates stated that yes, I usually wrote using a kind of rudimentary word-processor called an Alphasmart (then out for repairs with a faulty display). He finally relented, his expression changing from one of indigent anger, to one of bashful apology. “I’m sorry,” he said, “it’s just so many people make it up.”

He was not the first to make such assumptions, and he would not be the last. Such experiences were fairly common throughout my schooling. This was, however, the first time I realised just how invisible my disability was to other people. I understood why Professor Amanda Kirby described dyspraxia as “The Hidden Handicap.”

My experience is far from unique. An estimated 70% of the 11 million people with disability in the UK have a “non-visible” disability (PscyhReg, 2020). The teacher’s assertion that “so many people make it up” illustrates one of the key issues that people with non-visible disabilities face: lack of awareness and ignorance, particularly of those in positions of authority. Such ignorance places barriers in the way of the support that people with non-visible disabilities often need.

There remains a long way to go. Women in particular are both more likely to suffer from non-visible disabilities, and less likely to have their pain taken seriously by health professionals – a phenomenon known as “Pain Bias” (BBC, 2018). Certain non-visible illnesses, such as endometriosis, which affect only women, are often dismissed or minimised.

Endometriosis is classed as a disability in Australia, but not in the UK, and women with this condition are frequently misdiagnosed as suffering from “period pain” which can lead to severe health complications down the track. A recent All Party Parliamentary Group (APPG) report found that only 26% of endometriosis sufferers found their GPs helpful or very helpful, compared to 46% that found them unhelpful or very unhelpful. The average diagnosis takes a whopping 8 years from first onset of symptoms – with no improvement in this timeframe in the last decade. The APPG also recognised that additional barriers face women from black, Asian and minority ethnic communities in accessing adequate care (APPG Report Into Endometriosis, 2020). More must be done to ensure that women suffering with this condition are taken seriously by the health service, and can access the care they require.

In many cases, the issues that face people with non-visible disabilities stem from wider societal ignorance, discrimination and prejudice. The frontline of combating prejudice is education. As my own experience shows, students with non-visible disabilities are subject to unfair treatment not just from their fellow classmates, but from teachers and staff too.

According to a 2007 Mencap study, 83% of children with learning difficulties had experienced bullying, whilst a more recent study by the Anti-Bully Alliance reported that 70% of all teachers had heard ableist slurs used towards SEND – Special Educational Needs or Disability – students (Mencap, DON’T STICK IT, STOP IT. 2007; SecEd, ‘Tackling the Bullying of Pupils with SEND, 2016). Another Mencap campaign of the mid noughties (the time I was at school) titled They Won’t Believe Me: bullying of children with a learning disability, seems to encapsulate precisely the struggles of children to even have their disabilities acknowledged by peers and authority figures.

In many ways, I am lucky; the support of certain charities and government organisations meant I had equal access to education, including university. My parents were supportive of my diagnosis and sought the appropriate help (many people with dyspraxia are not diagnosed till later in life). Advances in information technology have ensured that my inability to write by hand has not impacted my schooling or career nearly as much as it would have even 20 years ago. I have lived with it for so long, that my condition is invisible even to myself. It rarely enters my thoughts most days, often only when my partner will suggest some idiosyncrasy I had never considered to be an aspect of dyspraxia as related to the disorder.

For many people, this is not the case. They face the ignorance expressed by my teacher on a daily basis. The consequences can be embarrassing and, at times, painful. This stigma is why it is so important to raise awareness of “non-visible disabilities” – as not every condition is accompanied by a wheelchair or a cane.

For example, something as simple as toilet signage can have a massive impact on people living with Crohn’s or Colitis. These inflammatory bowel conditions often mean that access to toilets (particularly disabled/ accessible toilets) is of great importance. However, according to Crohn’s and Colitis UK, 29% of sufferers have been rejected access to accessible toilets because their disability is not visible, and 50% have received negative comments or abuse for using accessible toilets (Crohn's and Cloitis UK, 2020). No less than 95% of Crohn’s and Colitis UK supporters surveyed reported feeling that the public has limited to no awareness of the conditions – and that awareness is a crucial step to reducing stigma and embarrassment.

On the other hand, 2,500 branches of the UK’s Big Five supermarkets (ASDA, Sainsburys, Tesco, Waitrose and Morrisons) now feature altered signs that read “Accessible Toilet: Not every disability is visible”. Over 80% of people with Crohn’s or Colitis surveyed reported feeling more comfortable in locations with this signation – a significant success for Not Every Disability is Visible campaign.

So what can be done?

Fortunately, on the now-u app and website there are many easy ways of supporting causes that will make a real difference to the lives of people with non-visible disabilities.

RAiISE (which stands for Raising Awareness of Invisible Illness in Schools and Education) is a charity that works to support children and students with invisible illnesses through providing information to education professionals. You can donate to RAiISE here.

Endometriosis UK does sterling work representing sufferers of Endometriosis, and you can lobby your local MP demanding better care for people with Endometriosis here.

In two simple steps, you can take action to end the stigma felt by Crohn’s or Colitis sufferers, by asking the 12 largest restaurant and pub chains in the UK to install new accessible toilet signage here.

A recurrent theme of this blog has been the ignorance faced by people with non-visible disabilities, and one of the best things you can do to support this community is educate yourself on the difficulties they face. A great place to start is this video from RAiISE CEO, Sophie Ainsworth, filmed when she was just 19, explaining how it feels to have an illness that people can’t see or understand.

I began this piece with a personal story, illustrating my experience going to school with dyspraxia, and you can learn more about this particular condition through the Dyspraxia Foundation’s excellent information sheets.