I am motivated to write this editorial because of an article that was written by Paula McElwee, who is the Technical Assistance Coordinator in the national independent living community. McElwee is a person with an invisible disability. McElwee shared information about her experience with living with an invisible disability. How others (even in the disability community) sometimes questions the validity of her disability and the disabilities of other individuals, and what she has learned from others in the disability community. Her article resonated with me because I am also a person who has invisible disabilities. I dedicate this article to all of you who have an invisible disabilities; and for those who don’t, I hope you gain some insight and sensitivity to our experiences.
When you have an invisible disability, there can be a perception by the community that your disability isn’t real or significant or that you aren’t really a person with a disability. You have to prove that your disability is real, significant, and at times debilitating. Think about this; when you watch someone that is parking in an accessible parking space and they don’t have a “visible” physical disability, what are your thoughts and reactions? Do you find yourself thinking, “Well, why is that person using that ‘handicapped’ spot? They obviously don’t need it!”
An “invisible”, “non-visible”, “hidden”, “non-apparent”, or “unseen” disability is any physical, mental, or emotional impairment that goes largely unnoticed by the general population. An invisible disability can include, but is not limited to: cognitive impairment and brain injury; the autism spectrum and its physical manifestations; chronic illnesses and diseases like multiple sclerosis, chronic fatigue and chronic pain, autoimmune compromise, and fibromyalgia; hearing and visual impairments; ADHD; learning disabilities and dyslexia; and depressive, bipolar, and anxiety disorders like major depression, bipolar, generalized anxiety, and PTSD. (Invisible Disability Project)
The term we define invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person. (Invisible Disabilities Association)
It’s important to remember that even well-intended comments can be hurtful and damaging. Regardless of what anyone says, each of our experiences are valid, and we all are deserving of understanding and support.
Unfortunately, people often judge others by what they see and conclude a person can or cannot do something by the way they look. This attitude can be equally frustrating for those who may appear unable but are perfectly capable, as well as those who seem able, but are not.
In the Independent Living community, we recognize that each of us has a different set of needs. We need to find our solutions, our coping mechanisms. We need to be able to back away if the situation is more than we can handle at the moment. And we need to allow our brothers and sisters the courtesy and respect of letting them tell us how we can assist and provide a safe space for these conversations without judgment. (Paula McElwee)
How can we embrace our disability, hold disability pride if we don’t even acknowledge it? We can do this by acknowledging what we need and to support each other by allowing each person to define their disability and their support needs.
We each have stories to share, but in order to share these stories, we need to respect each other, listen to each other, and learn from each other. That means suspending our assumptions we have towards others and embracing the diversity that all of us bring to our families, workplace, and communities. If we can open our hearts in this way, people with visible and invisible disabilities can achieve justice, independence, acceptance, and integration.
Invisible Disabilities Association: https://invisibledisabilities.org/what-is-an-invisible-disability/
Invisible Disability Project: https://www.invisibledisabilityproject.org/
[image description: Five figures that are white and look like humans are in a straight line. In the middle of each figure is are words for invisible disabilities. The first figure has the words ADHD. The second figure has the words Fibromyalgia. The third figure has the word Dyslexia. The fourth figure has the words Crohn’s Disease. The fifth figure has the words Arthritis. Under the five figures are the words, Sometimes disabilities are invisible.]