How Invisible Should an Invisible Disability Be?

Every person with a disability is an individual.

Itzhak Perlman

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Three years ago, a good friend of mine was diagnosed with breast cancer.

Before she discovered that mysterious lump, Annie was a regular fixture at various Zumba and Pilates classes. She loved to cook and was always creating incredible recipes for family occasions, like Tiki Barber’s Korean-style short ribs for Super Bowl Sunday or grandma’s homemade lasagna with fresh mozzarella and fennel sausage for Christmas dinner.

In the office, she was a dynamo and a mentor to others. She never made excuses and rarely called in sick. She wanted to keep her newly unearthed disability invisible. Why? Because even through her disability was invisible, she knew people’s reactions to it are not.

Other than close friends and family, Annie decided to keep her illness to herself. She didn’t access the Family Medical Leave Act) that afforded her protections under the law to care for herself and safeguard her job. I was afraid for her, though it was ultimately her choice. Even more, it got me thinking:

• How many people do we pass by every day who are walking around with a disability that we can’t see?
• When should we tell an employer or potential employer that we need accommodations due to health-related issues?
• How do we navigate protecting our jobs while also protecting our privacy?

If I can’t see it, does it really exist?

One of the accommodations Annie did accept with the news of her diagnosis was a handicapped parking decal. While she was convinced that there were others who really needed it more than she did, she realized there may be times it would be important to have.

A few days after Annie had one of her radiation treatments, we met at a local coffee spot to catch up. While she was tired and weak, she wanted to get out to help put herself in a positive headspace and help speed her recovery. On this occasion she used the permit.

After our visit, we gave each other a hug good-bye and went our separate ways. As I opened my car door, I heard a woman shouting. When I looked up, I saw that she was screaming at Annie for parking in a handicapped spot. “You should be ashamed of yourself; that’s a real abuse of that spot. Look at you. You’re fine!”

One of the amazing things about Annie is that she never “looked sick,” and she never lost her hair. To me she was visibly tired, weaker and thinner. To the rest of the world, however, she looked perfectly normal.

What are examples of an Invisible Disability?

Some common hidden disabilities, as noted by the Center for Disability Rights, include:

• Diabetes
• Chronic Fatigue Syndrome
• Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder
• Epilepsy
• Psychiatric Disabilities, i.e., depression, bipolar disorder, anxiety disorders, PTSD

While all of these disabilities are separate and impact people and families differently, they all share some commonalities:

• One is unable to “see” the disability.
• There are no “visible” supports to indicate the disability, i.e., cane, wheelchair, sign language, etc.
• The disability may be managed througn medication or behavior in many instances.
• The person is in some kind of physical or emotional pain.

According to Disabled-World.com, it is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability. Additionally, a 2017 survey conducted by the Center for Talent Innovation identified that among white-collar, college educated employees, 30% have a disability. Only 3.2% self identify as having a disability to their employers. And of all employees with a disability, 62% have an invisible disability. In the survey, those employees responded, “Unless I tell them, people don’t know I have a disability.”

Pros and Cons of Disclosing an Invisible Disability.

Generally seeing a person in a wheelchair, wearing a hearing aid, or carrying a white cane tells us that a person may be disabled. But what about invisible disabilities that make daily living a bit more difficult for many people everywhere.

Let’s say you are interviewing for a new job. As you know, today, the competition is fierce for every open spot, especially in the world of COVID-19.

Your credentials are impeccable. Your skillset is exactly what the company is looking for. Your salary fits in the range they are offering and culturally you mesh well with the team. There’s just one thing – you have an invisible disability.

Do you tell the hiring manager about it realizing: (1) You will be afforded proections under the law for disclosing, (2) There are tax benefits to companies that hire disabled American workers, and (3) You are disclosing that you need special accommodations, may not be reliable at times due to your circumstances, and may require additional time off? It’s a very difficult decision.

In speaking with HR professionals associated with the Society of Human Resources Managers, they admit that there can be an unconscious bias associated with such a confession. However, true to their profession and ethics, they also believe that being truthful from the beginning is in everyone’s best interest.

Personal Comfort Level.

Like so many things in life, whether to disclose an invisble disability to an employer seems to be a judgment call. If the law could stand on its own merit and make hiring someone with an invisible disability a non-issue, there would be nothing to contemplate. However, with human emotion and bias factored in, the waters become muddied.

Other than for a point of pride and privacy, my sense is that it would be easier for someone like Annie to tell her managers and coworkers about her situation if she chose to do so. She has been with her company for 20 years. They know she is reliable. They know the caliber of work and her work ethic. (A person must be with an employer for a minimum of 12 months to be eligible for FMLA.)

The decision to disclose your invisible disability with your employer is a personal and private one. Discuss the pros and cons with your family and medical team. Resources such as InvisbleDisabilities.org or WorkPlaceInitiative.org provide terrific insights for both employees and employers alike. Some questions to ponder through the decision-making process include:

1. Do I mind if my boss knows that I have an invisible disability and what it is?
2. Do I want to work for a company that I am afraid to share this information with?

Between having a team of supporters, being armed with accurate information concerning your rights and how to approach this type of conversation, and being able to live with your decision, you should be able to discern what is right for you.

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Postscript.

If you or anyone you know has an invisible disability, there is now a National Disability ID Card that is available at InvisibleDisabilities.org. The goal is to support individuals with invisible disabilities who may be in need of help while in public locations.

The State of Alaska is the first in the nation to authorize their DMV to provide a method for a person to voluntarily designate a discreet symbol that identifies a person with a verifiable cognitive, mental, neurological or physical disability. This allows law enforcement to react accordingly during a routine traffic stop.