What is an “invisible disability?” Is it a specific illness or condition, such as multiple sclerosis, fibromyalgia, bipolar disorder, diabetes, a Chiari malformation or syringomyelia? Is it the symptoms of an illness or disability, such as pain or fatigue or neuropathy or brain fog? Why do we even use the phrase or where did it come from? Isn’t a disability just a disability, no matter if you can see it or not? Are people treated differently because their disability manifests itself visibly? Is having a disability different from being disabled? All great questions! Is someone, who has an illness or is in pain or has a disability or is disabled, a bad person who should be treated like a lesser human? I can answer that one. NO!
Twenty years ago in 1996, my wife, Sherri, coined the term “invisible disability.” Why did she come up with it? After receiving a diagnosis of primary progressive multiple sclerosis and chronic late stage Lyme disease in 1991, at the young age of 27, Sherri endured the stares and accusations and disbelief of strangers and friends that 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.
As a tech guy, I decided to use some of Sherri’s pamphlets she wrote to help friends and family better understand what she was going through such as “Multiple What? Untangling the Perplexities of Multiple Sclerosis” and “Don’t Judge by Appearances – Parking with Invisible Disabilities” and created the InvisibleDisabilities.org website. That is when The Invisible Disabilities Advocate® was launched (which became theInvisible Disabilities® Association (IDA)). Almost immediately, 25,000 people a month started coming to IDA’s website and said that we put into words what they had been trying to tell their friends and families. “Invisible disabilities” progressed from a very descriptive term to an international organization and movement.
Of course, the question most-asked of our organization is, “what is an ‘invisible disability?’” 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! 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 does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.
According to the Americans with Disabilities Act of 1990 (ADA), 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, “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).”
Often people think the term “disability” only refers to people using a wheelchair or walker. On the contrary, the 1994-1995Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost one in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker. In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.
The term “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.
Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have an invisible disability. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they live with an invisible disability.
Unfortunately, people often judge others by what they see and often conclude a person 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, as well as those who appear able, but are not.
International Disability expert Joni Eareckson Tada explained it well when she told someone living with debilitating fatigue, “people have such high expectations of folks like you [with invisible disabilities], like, ‘come on, get your act together.’ But they have such low expectations of folks like me in wheelchairs, as though it’s expected that we can’t do much.”
The bottom line is that everyone with a disability is different, with varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes.
At the Invisible Disabilities® Association, we do not maintain a list of specific illnesses and diagnoses that are considered invisible disabilities. There are thousands of illnesses, disorders, diseases, dysfunctions, genetic defects, impairments and injuries that can be debilitating. Therefore, all conditions that are debilitating are included when we talk about invisible disabilities. However, our focus is not to attempt to provide a vast amount of information about thousands of specific conditions (there are plenty of amazing organizations that do that).
IDA is here to provide awareness, education, connection and support for everyone who lives with a debilitating condition. We do this by offering articles, pamphlets, books, resources, radio interviews, video, seminars, symposiums and more to give hope and compassion to all living with invisible disabilities as well as information for loved ones to better understand.
IDA’s mission is to encourage, educate and connect people and organizations touched by illness, pain and disability around the globe. Hard to believe it has been twenty years yet there is still so much more work to do. Will you join us on this journey and envision a world where people living with illness, pain and disability will be Invisible No More®?
About Wayne Connell:
Wayne Connell, the founder and president of the Invisible Disabilities® Association (IDA), established IDA twenty years ago in 1996 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the book, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities.
Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them atwww.Facebook.com/invisibledisabilities or becoming a member ofInvisibleDisabilities.Inspire.com. Join IDA at our 2nd annual Brain IDEAS Symposium on August 5th. Invisible Disabilities Week is Oct 16 through 22, 2016. Our 9th Annual Awards Gala, “Jazzed About You” will be October 21st.
Join us for Invisible Disabilities Week every October! Don’t miss the Annual IDA Awards Gala and the Brain IDEAS Symposium.