Invisible disabilities: prevalence and consequences

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wWhen I look at pictures of my brother as a child, I see an auburn-haired boy with freckles and usually a mischievous smile on his face. In retrospect, I also see a “different” look in his eyes now, but nothing too extraordinary to notice. I’m a little biased, but I think my brother was a nice guy. For the first twenty years of his life, my brother’s disabilities were invisible. Sometimes it was a blessing, but other times it felt like a curse.

Prevalence of invisible disabilities

Many disabilities are invisible. Some examples of invisible disabilities include autism, chronic fatigue syndrome, heart disease, cystic fibrosis, some types of intellectual disabilities, and mental health problems. An estimated ten percent of Americans suffer from some form of invisible disability. The Americans with Disabilities Act, which was passed in 1990, defines an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities, has a record of, or is deemed to have such an impairment impairment.

I have been guilty of judging people who use handicapped parking and then get out of the car with no visible bodily harm. Now I understand that there are many cases where a person has a disability, but it is not visible. A physical disability must not involve a cane, walker or wheelchair. The reality is that 74% of severely disabled Americans are not using any of these devices that we associate with the idea of ​​physical disability.

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Many people with intellectual disabilities have no visible disability. For example, the top three intellectual disability diagnoses are Down syndrome, Fetal Alcohol Syndrome, and Fragile X. All three have physical characteristics that indicate their disability. However, hundreds of other causes of intellectual disability have no identifiable appearance.

Potential consequences of an invisible disability

Delayed diagnosis

Why is an invisible disability bad? In my brother’s situation, his normal appearance played a role in getting a delayed diagnosis. The doctors didn’t take my mother’s concerns seriously because David looked like a normal child. Because he didn’t receive a diagnosis until age three, he missed out on early intervention therapies that are often beneficial.

Wrong assumptions

My brother lacked physical markers often associated with intellectual disabilities, so people were shocked when his behavior got out of control. It was impossible to ignore my brother’s screams, hand biting, hitting and head banging when he was upset. People thought he was just throwing an age-inappropriate tantrum and needed better parents. I’ve heard parents of people with autism comment on negative stares and comments from strangers if their child has a meltdown in public. Not seeing a disability, people wrongly assume that the child needs better discipline.

Difficulties in public toilets

My brother’s invisible disabilities made a difficult situation even more uncomfortable. Toilets were a significant problem when we were kids and I dreaded the inevitable problem when out in public with him. I couldn’t let him into the men’s room by himself, so I put my embarrassment aside and took him into the women’s room. In case you’ve never experienced it, I can tell you that people do not I love it when you take a teenager into the ladies’ room. I tried but was never completely able to ignore the mean stares and comments. (I do want to complain about the lack of family bathrooms, but I’ll save that for another time!)

Prolonged denial

My brother’s appearance also contributed to my father’s denial that there could be anything wrong with his only son. Of course, other factors contributed to my father’s reluctance to accept my brother’s intellectual disability diagnosis, but the fact that my brother was “normal” looking and fairly athletic hindered my father’s acceptance. My grandmother was also in the denial camp. Although my brother had very limited speech and an IQ in the fifties, my grandmother insisted she just needed better discipline.

Switching from invisible to visible disability

As my brother got older, his physical appearance changed dramatically. It is now evident that he has intellectual disabilities. A combination of aging, scoliosis, and self-harming injuries have significantly altered his appearance. When we go out in public, people are aware that he has disabilities. In a way, this makes it easier. People aren’t shocked when his behavior is strange.

When I stand outside the men’s room to check it out, I get some weird looks. But when they see it emerge, they understand. Expectations are different because his disabilities are visible now. I’m happy to report that most people are nice to us. The cashiers allow him to slowly count his money (usually incorrectly, offering two dollars for a thirty-dollar purchase), and the waiters are patient and understanding when I take him out to eat. When he gets stuck in an obsessive-compulsive cycle of touching a doorframe or picking lint, people seem to understand.

As a sister to a brother who once had invisible disabilities but now has visible disabilities, I have experienced both sides. Each of them has its share of challenges. I hate to be too simplistic, but following the “golden rule” is a good idea. Treat others as you would like to be treated and be nice to everyone you meet. You don’t know their struggles and you don’t know if they have an invisible disability. Through my experiences with my brother, I’ve learned to give people the benefit of the doubt. Be kind, kinder than necessary. It’s not that difficult.

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With my brother at Night to Shine several years ago.


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Invisible disabilities: prevalence and consequences

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