The hidden world of non-visible disabilities

For International Day of Persons with Disabilities 2022, we invited Dr Elohor Ijete, currently completing FY3 year in forensic psychiatry, to write about non-visible disabilities. Elohor is the main carer of her mother (Dr Onikepe Ijete) who is a psychiatrist and who has a physical disability.

Disability is described as a term covering “impairments, activity limitations and participation restrictions” by the World Health Organisation. Over a billion people (15%) worldwide live with a disability.¹

Not all disabilities can be instantly seen or are obvious to others. These are often referred to as hidden or non-visible disabilities. A non-visible disability is described as a “physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities”.²

Non-visible disabilities can include traumatic brain injury, dementia, learning difficulties (such as dyslexia), chronic health conditions (such as diabetes and Crohn’s disease) and mental health disorders.³ In 2020, 14 million people (21%) in the UK reported having a disability. Of this number, it was estimated that 70% of the disabilities were non-visible.⁴

Having a disability or a chronic health condition can be a life-changing event in one’s life. Going through this process can be made even more difficult by having to deal with a significant amount of stigma associated with disability. I have seen this first-hand with my mother who is a wheelchair user.

I have witnessed people assume she is unemployed only to see the surprise on their faces when they find out that she works full time as a specialty doctor in forensic psychiatry and she drives her own adapted car. Navigating the stigma associated with disability can be even more difficult when you have a non-visible disability. 

The fear of being discredited or stigmatised can lead a person with a non-visible disability to conceal their disability. However, this could lead to the dilemma of them not receiving the support they need if they chose not to disclose their disability.⁵

Even when they do disclose they can face the additional challenge of not being believed or a lack of support and understanding as their disability is not outwardly observable. I recently met a co-worker with a non-visible disability who told me that she often has to show people her blue badge to prove that she can park in a disabled parking bay.

The first step to addressing an issue is to raise awareness that the issue exists. Initiatives such as the hidden disabilities sunflower which allows someone with a non-visible disability to discreetly signal that they may need additional help or support have helped to increase awareness.⁶

In Scotland, a young lady called Grace Warnock who has a non-visible disability (Crohn’s disease) was awarded the points of light charity award for her work on awareness of non-visible disabilities. She created a sign for disabled toilets that includes representation of non-visible disabilities after she personally was criticized for not appearing disabled.⁷

The more work that is done to increase awareness of both visible and non-visible disabilities, the more likely we are to live in a world that promotes inclusivity and equity for non-visible disabilities.

Bibliography

1. WHO. Disability and health [Internet]. Who.int. 2018. Available from: https://www.who.int/news-room/fact-sheets/detail/disability-and-health 
2. Connell W. From defining invisible disability to invisible no more -- what is an invisible disability? [Internet]. Invisible Disabilities® Association. 2017. Available from: https://invisibledisabilities.org/ida-getting-the-word-out-about-invisibledisabilities/defining-invisible-disability
3. DPTAC. DPTAC position statement on non-visible disabilities [Internet]. GOV.UK. The Disabled Persons Transport Advisory Committee; 2020. Available from: https://www.gov.uk/government/publications/dptac-position-on-non-visible-disabilities/dptac-position-statement-on-non-visible-disabilities
4. UK Parliament. Approved work: Invisible disabilities - post [Internet]. POST. UK Parliament ; 2021 [cited 2022Dec5]. Available from: https://post.parliament.uk/approved-work-invisible-disabilities
5. Goffman E. Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster; 1963.
6. Sunflower HD. The sunflower is for people with non-visible disabilities [Internet]. Hidden Disabilities Sunflower. 2022. Available from: https://hiddendisabilitiesstore.com/uk/
7. Shining light on the stigma surrounding invisible disabilities [Internet]. Legal Spark. Legal Spark; 2019. Was available from: www.legalspark.scot/news/2019/5/17/shining-light-on-the-stigma-surrounding-invisible-disabilities -