Disability 101: Hidden Disabilities
June 24, 2008
When I was teaching special education, I also coached Special Olympics. I used to take our athletes to the regional Special Olympics Winter Games.
Local reporters came as well and generally would print a photo in the local paper. Predictably, the athletes that looked the most disabled, those who used wheelchairs or those with Down Syndrome, were the ones who got their pictures in the paper. Kids who looked “normal” never got their pictures in the paper.
Our society is stuck with an image in our minds of what a disability looks like. Then we rush to aid all those that look disabled.
What about people with hidden disabilities? People with heart disease, liver or kidney disease, respiratory illness, asthma, cancer, AIDS, diabetes, fibromyalgia, chronic fatigue syndrome, lupus, arthritis, epilepsy, multiple sclerosis, muscular dystrophy, and Crohn’s disease, to name a few, often look “normal” but are in need of accommodations as much as a person who uses a wheelchair.
Unfortunately, for those with hidden disabilities, accommodations are not always forthcoming. They face frequent discrimination in their jobs and in the community simply because they don’t look disabled enough.
An individual with heart disease may look “normal” but may be totally unable to walk any distance. Yet when they use their disabled parking permit they are often met with suspicion and shame. Others decide they don’t look disabled enough and think they shouldn’t be parking in disabled parking spots.
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Persons with hidden disabilities are often seen as “lazy” or as “faking it”. They don’t have one of the socially acceptable disabilities and discrimination results.
The two most challenging symptoms of my multiple sclerosis are fatigue and pain.
However, in many people’s minds fatigue and pain don’t count as a disability. I’ve had people say to me, “Oh, I have that.”
Begging your pardon, but you don’t have that. This fatigue is not the “I’m tired. I’ve been working overtime and I haven’t gotten enough sleep,” kind of fatigue. I’m talking about the type of fatigue that’s “I’ve gotten enough sleep, I haven’t hardly done anything, yet I feel like I’ve been run over by a Mac truck, I’m literally too exhausted to lift my arms, and my brain has literally shut down.”
This level of fatigue can be experienced by those with multiple sclerosis, kidney disease, cancer, chronic fatigue syndrome and fibromyalgia, again to name a few. It destroys your life and makes normal activities impossible. I can’t tell you how discouraging it is to try to describe this type of disability to someone and then have that person say, “Oh, I have that.”
Along the same lines, much discrimination occurs against people who experience a disability but don’t have a clear cut diagnosis. The bad news is that medical science is nowhere near keeping up with disabling conditions. There are many, many people out there who experience disabling symptoms but doctors have no clue what’s going on.
As a special education teacher, I had many students who were born with mobility impairments or cognitive impairments but who never received an official diagnosis. Just because doctors don’t know what is causing the disabling symptom, doesn’t mean the disabling symptom does not exist.
Many times people ask “When were you diagnosed?” That question is irrelevant. The question should be “When did you experience your first symptoms?”
Once again, it boils down to not making assumptions. Don’t always think you know everything there is to know. Make an effort to get to know people with a disabilities, including those with hidden disabilities, and be open to learning about what they are experiencing.
Frisco resident Sandy Lahmann is a disability consultant with Wheels on the Summit. E-mail her at firstname.lastname@example.org .