Dispelling the myths about hidden disabilities

hidden disabilitiesInvisible disability, or hidden disability, is a broad term that captures a whole spectrum of hidden conditions that are primarily neurological in nature and are not immediately apparent.

They include Autism, Dyslexia, Dyspraxia, Crohn’s, ADHD, Fibromyalgia, IBS, ME, MS, Asperger’s and Mental Health conditions. A hidden disability can be a daily challenge for the person who has it but it can be difficult for others to understand.

On Thursday 6 December the Student Support team will be holding a Hidden Disabilities Awareness event in the Student Hub. Please drop in to find out more.

We’ve written this post to bust some of the myths around hidden disabilities and to share personal experiences of hidden disabilities as told by members of the Marjon community.

I received the Aspergers-type diagnosis I was expecting, with an additional ADHD co-morbidity that I was not (I had been over-thinking the questions on the ADHD diagnosis tests)!  Recognising my difficulties in starting things led to me using family or support workers to get me going. Other difficulties with some loud sounds has been helped by noise-cancelling headphones.

I’ve never been too good at seeking out social experiences, so I forced myself to participate in Judo Society at university, since without social stimuli, I will spiral into lows. Unfamiliar people can trigger anxieties, sometimes, as can comments acquaintances make – little things I consciously know I’m probably over-thinking, but still make me worry I’m (at best) tolerated.  Judo is very socially draining, but rewarding.

My key to coping, I think, is being able to remove myself from whatever stimulus is causing distress, then focusing on something enjoyable – often a familiar song/video, while fiddling with an elastic band, and making a cup of tea. I do tend towards not getting started on things, if left to my own devices, but this means I appreciate the value of rest and breaks – something crucial to avoiding burnout.

Myth. Is it okay to refer to people who do not have a disability as ‘able-bodied’?

Fact. No. This term suggests all disabilities are physical and that disabled people are defined by what they can or cannot do. Instead, if it is really necessary to make the distinction, use the term ‘non-disabled’ for people who do not have a disability. Also, the term ‘ableism’ is sometimes used in a negative way; describing disabled individuals by their disabilities and as inferior to the non-disabled.

Myth. Hidden or invisible disabilities are more likely to be disclosed than those which are more obvious.

Fact. Sadly not. Some people might feel more stigmatised or embarrassed to disclose an invisible disability than a physical one, for example, conditions such as Crohn’s or Irritable Bowel Syndrome. Although mental health is becoming more widely discussed following increased public awareness and understanding, there still remains a lack of education in respect of hidden or invisible disabilities.

I have a number of invisible conditions, Scleroderma, Cardiomyopathy, Sjogrens Syndrome and Fibromyalgia, which sometimes cause severe physical pain in going about my daily life.

I take 15 tablets a day to keep me well and functioning. The worse thing is people can’t see how I feel inside, and they don’t understand that you can feel so different day to day. Today they might see me walking around with no aches no pains and feeling great, but what they don’t see is that by the time I get home I can struggle to walk upstairs, to get up and down on the sofa, to prepare a meal.  One day I can lift things and stretch and the next ache so much I can hardly move.

These illnesses get you so down that you could just cry because people just don’t believe you. I wake up in the morning and move my joints to see which one is going to be trouble today. If I sit at my desk for a while and get up I walk like an old woman but by the time I come back in I look like I am fine. Believe me it’s as confusing to me as much as it is confusing to you. Like my doctor says I may look a picture of health, but in fact I am quite unwell.

Myth. Nobody thinks in stereotypes – we’re more sophisticated now.

Fact. Many people live with invisible or hidden disabilities. These can physical, mental, sensory or neurological conditions which don’t have physical signs but are painful, exhausting and isolating. In 2015, it was reported that 42% of disabled people seeking work found the biggest barrier to getting hired were misconceptions around what they could do. Sadly, we can still be misinformed in our perceptions of how barriers can restrict a disabled person’s access to work.

Myth. Neurodiversity is just a new label for people with dyslexia and other Specific Learning Difficulties.

Fact. Neurodiversity refers to the diversity of human brains and associated cognitive functioning. We’ve replaced the notion of disability (and deficit) with that of difference. We have different sets of abilities and therefore process information in different ways, for example, sequentially or holistically.

It bugs me when people assume that to be dyslexic means you’re not good at reading or spelling. In fact dyslexia varies from person to person so everyone experiences it differently. It is essentially about differences in how people process information. While dyslexia is not linked to intelligence it can make learning difficult. It is an alternate way in which the brain is wired. One that brings with it certain strengths and weaknesses.

My own experience of dyslexia doesn’t fit the stereotype. I have always enjoyed reading and writing, though I write slower than most people. I sometimes find spoken language hard to process. For example I sometimes struggle to follow what people are saying, answer questions or keep up with group discussions.

Once I’d understood my own dyslexia I was able to learn techniques to manage the difficulties. I also came to understand how it dials up certain skills. Many people who have dyslexia have strong visual, creative and problem-solving skills. I can very quickly see how ideas or things fit together because dyslexic minds are good at making interconnections. When faced with incomplete information I feel relaxed that I’ll figure something out, freeing me to be creative and flexible.

Support is available at Marjon for students with hidden disabilities. The first step is usually to book into a wellbeing signposting session by emailing studentsupport@marjon.ac.uk or by coming to the Information Hub. Or you can attend a drop-in held by the Student Support team, the times will be posted to the Student Hub. The disability and inclusion team can also be contacted directly at disability@marjon.ac.uk.

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