Making the Invisible Disability Inclusion Connection 

Filed under Disability Awareness & Confidence

Reading time: 5 min. | Guest post by Wayne Connell

A man is sitting with his eyes closed and his elbows resting on a table. His arms are raised and his fingertips are pressing against his temples. There are swirls around his head, representing dizziness.

One of the most important things to grasp about disability, is that disability is diverse. Some disabilities are visible. But the most common ones are invisible.   

So what exactly is an invisible disability?  

These are all great questions.  

How the term “invisible disability” originated 

Here’s another one: Is someone who has an illness; or is in pain; or has a disability; or is disabled, a bad person to be treated like a lesser human? My answer to that is, definitely not. 

Twenty-seven years ago — in 1996 — my wife Sherri coined the phrase, “invisible disability.” Why did she come up with that phrase?  

Sherri and Wayne Connell are smiling at the camera. Sherri's on the left. She has blond hair, tied back, with bangs. She's wearing a heart-shaped necklace, dangling silver earrings and a grey-and-white floral blouse. Wayne has dark brown hair, and a close-trimmed moustache and beard. He's wearing a black shirt.Because having become disabled due to Primary Progressive Multiple Sclerosis and Chronic Late Stage Lyme Disease in 1991 — at the young age of 27, Sherri endured the stares, accusations and disbelief of strangers and friends. 

They questioned how she could be disabled and still walk with seemingly unapparent outward signs of her disabilities.  

People would often scream at her when she parked in an accessible space. Or ignore her when she collapsed on the floor of a department store.  

So the phrase, “I have an invisible disability” became an apt description of what she was living with.  

From descriptive phrase to international movement 

Sherri wrote pamphlets to help friends and family better understand what she was going through. Being a tech guy, I decided to use some of them — like Don’t Judge by Appearances – Parking with Invisible Disabilitiesas website content. With it, I created the InvisibleDisabilities.org website. 

That’s how the Invisible Disabilities® Association (IDA) came to be. Almost immediately, over 20,000 people a month started coming to the IDA’s website. Visitors were stating that “we put into words what they had been trying to tell their friends and families.”  

It was the evolution of “invisible disabilities” from an apt descriptive phrase to an international organization and movement. 

As the Founder of IDA, the question I get asked most often is, “What is an invisible disability?” 

Either way, this term should not be used to describe a person as weaker or lesser than anyone else. It’s disturbing that this unfortunately does happen.  

What an invisible disability is — and isn’t

In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed; or a mountain that creates serious changes and loss.  

Either way, this term should not be used to describe a person as weaker or lesser than anyone else. It’s disturbing that this unfortunately does happen.  

In 2021, over 50% of respondents to a UK government survey on disability said they worry “about being insulted or mistreated in public places.” A similar number said they’re “mistreated because of their disability.” 

Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.   

In addition, just because a person has a disability doesn’t mean they’re disabled.  

Diverse definitions of disability 

As I said at the top of this post, disability is diverse.  

I live in Colorado, so the U.S. federal Americans with Disabilities Act (ADA) of 1990 is my frame of reference. The ADA states that an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.  

Furthermore, the ADA states, “A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).” 

In Canada, the federal government doesn’t have an official definition of disability. And there isn’t a Canadian equivalent of our ADA here in the United States. In Canada  and many other countries, disability protections fall under human rights laws.   

The most widely accepted definition of disability is the World Health Organization’s (WHO). The WHO defines disability as “an umbrella term covering impairments, activity limitations and participation restrictions.” 

Similar statistics in U.S. and Canada 

Often, people think the term disability refers only to people using a wheelchair or walker. The reality is, only about 6% of people with disabilities use a wheelchair. Not everyone with mobility issues uses a wheelchair all the time. Therefore, a disability cannot be determined solely on whether or not a person uses a wheelchair or other assistive equipment. 

The statistics on disability in the U.S. and Canada are strikingly similar.  

According to the U.S. Centers for Disease Control, about one-quarter (27%) of Americans, or about 70 million people, have a disability.   

In Canada, it’s almost one-quarter (22%) of the population, or about 6.2 million people.  

The percentages of mobility issues are also similar. About 12% of Americans have mobility issues; 13% of Canadians have a hidden, or limited, mobility disability 

As well, in both countries, mobility issues are one of the most common disabilities.  

My association terms invisible disability as symptoms, impairments or conditions including: 

Here’s another important disability inclusion connection to make: Someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have an invisible disability they live with.

Still a major lack of awareness 

None of these are always obvious to the onlooker. All of them can sometimes or always limit daily activities. They can range from mild challenges to severe limitations. And they all vary from person to person. 

There are thousands of illnesses, disorders, diseases, dysfunctions, genetic defects, impairments and injuries that can be debilitating — that constitute an invisible disability.  

That’s why it’s important to include all conditions that are debilitating in any definition of invisible disabilities (like our association’s definition) when you talk about invisible disabilities.  

Here’s another important disability inclusion connection to make: Someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have an invisible disability they live with. It doesn’t matter whether someone uses an assistive device or not.  

But there’s still a major lack of disability awareness. People often judge others by what they see. And people too often conclude someone can or cannot do something, by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable. The same goes for those who appear able, but are not. 

Three things to raise invisible-disabilities awareness 

The bottom line — the connection to make — is that everyone with a disability is different. Each of them with varying challenges and needs; and abilities and attributes. We should all learn not to judge people based on appearances. 

This post intentionally coincides with Invisible Disabilities Week 2023 (October 15 to 21). IDA’s theme for 2023 is CARE In Motion, Listen | Believe | Support. So take time to: 

Do these three things, and you’ll be more disability aware. Aware enough to make the inclusion connection so many people living with invisible disabilities are hoping for. 

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Head-and-shoulders portrait of Wayne Connell smiling at the camera. He's wearing a blue shirt with the Invisible Disabilities Association logo on it.

 

Wayne Connell is the Founder and CEO of the Invisible Disabilities Association in Parker, CO.