What comes to mind when you think of a disability? For myself, I think of a physical disability. I imagine someone with difficulty walking; maybe they are using a mobility aid like a wheelchair or a cane. But what about unseen disabilities such as mental health disorders, hearing impairment, and chronic pain? In 2017, approximately 6.2 million Canadians aged 15 years old and above were living with one or more disability – that equals out to be 1 in 5 Canadians (Learning Disabilities Association of Canada, 2021). Of these 6.2 million individuals, the most reported disabilities were related to mental health, pain, and movement; meaning the majority are invisible (Learning Disabilities Association of Canada, 2021). In this blog post I will examine invisible disabilities (ID) further and identify common barriers, what it is like to live with IDs, and what can be done to better support those living with IDs.
What is an ID?
To understand what IDs are, it is important to understand what a disability is. A disability is an impairment of the body or mind that makes it difficult for an individual to participate in the world around them (CDC, 2020). IDs are disabilities that are not obvious just by looking at a person; for example, it would not be easy to identify someone with a learning disability or epilepsy at first glance (Disability Credit Canada, 2017).
How can IDs effect a person?
The World Health Organization categorizes disabilities into three dimensions (CDC, 2020):
1. Impairment: a limiting factor of the body or mind’s structure or function. An ID example of this would be loss of vision or loss of memory. The individual is unable to complete certain tasks in the activity that would rely on the impaired structure to complete.
2. Activity limitation: a factor that limits the extent in which someone may participate in activities. An ID example of this would be difficulties with seeing, learning, or problem solving. The individual can participate in the activity but there are limitations on execution.
3. Participation restrictions: a factor that limits a person in everyday activities such as employment. An ID example of this would be an unmanageable chronic health condition such as intractable migraines. The individual experiences an inability to participate in the activity.
What are the barriers that those with IDs face?
Barriers for those with disabilities will vary depending on an individual's impairment (Ontario Human Rights Commission, 2016). For the purpose of this post, I will focus on the psychosocial barriers that individuals with IDs experience: skepticism, judgment, and loneliness (Roshini et al., 2021; Smith, 2019; Syma, 2019).
1. Skepticism: Individuals often face skepticism when explaining their impairment or disability to others and have experienced negative consequences (Smith, 2019; Syma, 2019).
2. Judgment: A difficult feature of IDs is that impairments may fluctuate depending on a multitude of factors such as rest, diet, and external factors such as sounds or smells (Smith, 2019). In the workplace, an individual may have been granted an accommodation for their ID but receive judgment from their peers as they do not see the accommodation as fair (Syma, 2019). As healthcare workers we are very quick to judge someone who presents with an ID. Those with IDs are often labelled as "drug seekers" or "attention seekers". These beliefs can be detrimental to those living with IDs as healthcare professionals may miss important signs and symptoms and an opportunity to help.
3. Loneliness: Individuals are subjected to negative stereotypes and will hear others speak about them as if they aren't able to hear (Smith, 2019). Those with IDs in the workplace may feel ostracized by their peers when coworkers think the accommodation is unfair (Syma, 2019).
What is it like to have IDs? Consider the following: Imagine you are in a grocery store. You are pushing your grocery cart from item to item, picking out what you would like to purchase with ease. You hum along to the music playing overhead and smile as a woman walks past you, her perfume is a light floral scent. You head to the cash and put each item on the conveyor belt. The cashier reminds you that you have a case of water under the cart, and you bend over and pick it up, showing the cashier the barcode on the side of the case. When the transaction is complete, you head to your car and then home.
Now, imagine yourself completing the same task with a history of intractable migraines and chronic pain. As you make your way through the grocery store, you lean on the cart as your hips and back are really bothering you today. The music overhead, although quiet, distracts you and you cannot seem to remember what you were looking for. You look up and smile at a woman as she walks by. You breath in and smell her perfume; you hope this scent doesn’t trigger a migraine, although you are pretty certain it will. You think about the items left on your list and shorten the list in half – if a migraine sets in you will have to call an Uber to get home and you cannot afford that right now. You gather what items you can and head to the cash. You are struggling to put the items on the conveyor belt when the cashier reminds you of the case of water under your cart. You look up at the cashier and ask if they can come around to scan the barcode (you learned early on in your diagnosis that conserving your energy for when you are alone is extremely important). The cashier looks at you as if to say, “are you kidding me?” and comes around to scan the item. The cashier rolls their eyes as they head back to their post. You can feel your hands start to tingle and you know that you do not have much time before you start to have visual and auditory disturbances. You thank the cashier and head to your car that is parked in a disability parking spot. As you struggle to get the items into the trunk a couple walks by and you can hear them whisper to each other "they don't look disabled to me...". Thankfully, you make it home before the migraine sets in and are somewhere safe to weather the storm.
When both scenarios are compared, you can immediately see that it takes the individual with IDs twice as long to do half the amount of work. It is also easy to see the amount of judgment and assumptions made towards the individual with IDs which is not uncommon (Smith, 2019).
What can be done to support those living with IDs?
As I perused websites and journal articles I came across similar themes, all of which focused on education towards those who interact with and care for individuals with IDs (Centre for Disease Control, 2020; Disability Credit Canada, 2017; Smith, 2019). For the purpose of this blog post, I will focus on removing judgment, accommodations, and removing bias.
1. Ask, don't judge: Instead of making assumptions about a person's abilities/disabilities ask for clarification and don't assume they are making their symptoms up (Smith, 2019). Kindness goes a long way. Make en effort to learn more about people with disabilities and share that newly learned information with those around you (Respectability, 2021).
2. Learn how to help: People with disabilities have valuable insight into how to help make a space more inclusive. Take the time to listen to someone's symptoms/condition and see if there is a way you can help make their lives easier - accommodations aren't special treatment (Ontario Human Rights Commission, 2016; Smith, 2019). Providing accommodations is legislation but they don't always seem to be provided (Ontario Human Rights Commission, 2016).
3. Seek out further education/training: We all have biases that we need to overcome, especially in health care. The more time spend reflecting on these biases, the more positive patient outcomes we will see. One way of reducing bias would be to provide inclusions training to students of all ages (elementary school through University) and employees in all sectors (respectability, 2021).
In summary, the likelihood of you coming in contact with someone that has a history of IDs is high and the likelihood of you coming in contact with someone with a history of disability is even higher. Each disability is different and each individual may experience different triggers and symptoms. Our role as fellow humans is to approach each situation with an open mind and an open heart so we can be as supportive as possible. For a list of supportive things to say to someone with a disability, please click here.
References
Centre for Disease Control. (2020, September 16). Disability and health overview. https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html
Disability Credit Canada. (2017, 27 January). Living with an invisible disability. https://disabilitycreditcanada.com/living-invisible-disability/
Learning Disabilities Association of Canada. (2021, March 20). Canadian survey on disability. https://www.ldac-acta.ca/canadian-survey-on-disability-reports-a-demographic-employment-and-income-profile-of-canadians-with-disabilities-aged-15-years-and-over-2017/
RespectAbiliy. (2021, March 21). How to Include people with disabilities. https://www.respectability.org/inclusive-philanthropy/how-to-include-people-with-disabilities/
Roshini, R., Rajasekaran, V., & Mani, M. (2021). A Review on Disability Studies from 2000 To 2020. Language in India, 21(1), 73–80.
Smith, K. (2019, September 3). Respecting invisible disabilities is everyone’s job. Local Love. https://locallove.ca/issues/respecting-invisible-disabilities-is-everyones-job/#.YFvvdD9E2Um
Syma, C. (2019). Invisible disabilities: Perceptions and barriers to reasonable accommodations in the workplace. Library Management, 40(1), 113-120. http://0-x.doi.org.aupac.lib.athabascau.ca/ 10.1108/LM-10-2017-010
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