Describing a disability, disease or disorder to someone who doesn’t understand it can be tricky — particularly if the condition isn’t common or visible. Overly scientific descriptions aren’t usually easily understood and ignoring the topic entirely isn’t an option. So, what is a good way to describe a disability to someone who isn’t familiar with it?
To learn more about the tactics people use to describe disability, we turned to the people who do it every day. The Mighty asked our readers on Facebook to share how they describe their own or a loved one’s disability to people who don’t understand it. The responses we received were informative, creative and incredibly helpful.
Here’s what they had to say:
2. “I explained [my] cerebral palsy like this: ‘When you go out and play in the snow, come inside and can hardly move because your body is so stiff because of the cold? That’s how I am 24/7.'” — Desiree Ferguson
3. “My son has attention deficit hyperactivity disorder (ADHD). I tell folks to imagine their messiest bedroom and being told they had to keep it messy 24/7 and be productive. That’s how my son feels when people tell him he ‘just needs to be organized.'” — Amy Jones
4. “My son has autism. I tell people the best way to describe what my son deals with daily is to imagine being in a foreign country. You do not speak their language, they do not speak your language and you can’t communicate your needs to get help. You’re lost, hungry, thirsty, etc… How frustrated would you be? I believe this is a great visual aid for others to understand.” — Theresa Angrisano
5. “To explain my mom’s schizophrenia, I told the children in the family that [she] had more things going on in her brain than most people. If they didn’t understand what she told them to do, then they should go to another grown-up right then. It made sure that the child didn’t disrespect [my mom] by ignoring her.” — Jean Dial-Teague
6. “We say our daughter has cerebral palsy. Then we ask the person to flex their muscles and imagine having to hold the flex position for 18 hours. When we get the normal response, ‘Oh, that’s hard and would hurt,’ we say, ‘That’s what it’s like for our daughter.'” — Deirdre McDaniel
7. “I explain that having systemic scleroderma is like having a vat of concrete poured into your veins, skin, and organs. Eventually everything becomes so hard to move that you are paralyzed and everything shuts down. You slowly turn into a living statue.” — Chanel White
8. “[I explain it] with truth. My son has many scars from multiple surgeries. He is 6 years old and we always discuss his health, scars and disabilities with honesty. I prefer questions rather than stares or shooing people away.” — Jenn Budd
9. “I’ve told people to imagine, ‘If your lips were superglued and you couldn’t get anything out that you were thinking about, wouldn’t that frustrate you as well?” — Jimalea Jones
10. “For many years when people would ask what was wrong with our son, my wife and I would just say it was cerebral palsy and get it over with. It’s only been over the last year that we truly explain David’s condition of holoprosencephaly. Big words normally scare most people away, but those who truly want to learn will listen while we explain his brain developed differently than ours. We actually look forward to those questions now and the chance to educate others in our area.” — Bill Best
11. “It’s like being blind and just when you just get to where you know the layout of a room and are comfortable with it, someone comes in and moves the furniture around. That’s the mind of a child with ADHD and cognitive disorders.” — Jeannetta Harris
12. “You know how there are stressors in your life that make you nervous or anxious? Those situations make [my son] feel like the world is caving in and he has no control over his behavior because he is tapped out.” — Kimberly Konig Marley
13. “I have single-sided deafness of unspecified origin. My description of it? It’s like living in a wind tunnel with F-18 airplanes flying overhead 24/7.” — Donna Allgood Kuchem
14. “My sons are both undiagnosed. They have global physical and cognitive delays and are nonverbal, but they understand way more than people assume. I usually explain to children that they are just like everyone else but their bodies work differently and they use an iPad to communicate, which most kids find very cool.” — Anna Siderakis-Karounos
15. “I have Tourette syndrome, and when I describe my tics to people who aren’t familiar or who only know what they’ve seen in the media, I tell them having a tic is like a sneeze. You can’t always keep it in, and more often than not, if you suppress it, it will come back later with a vengeance. Most people tend to get a grasp on Tourette’s that way, because everyone sneezes and knows what that feels like.” — Lauren Elaine Childress
16. “My little brother once asked, at 3 years old, why he didn’t have crutches like me. I told him, ‘Because my legs aren’t as strong as yours, but that’s OK.’ He accepted that and had a simple, positive explanation to take forward with him.” — Tonia Says
17. “My son has apraxia, which I explain [like this]: ‘It’s like a marble in a drain. Sometimes the water can pass, other times it gets stuck.’ His speech processing is exactly like that.” — Sherry Mitchell
18. “I have depression and anxiety disorders. I [explain it] like this: Depression and anxiety are teammates and I’m the opposing team. Their one and only goal is to drag me down. They make me paranoid, they make me feel useless and they steal all of my energy and motivation. However, sometimes, they go on vacation. I never know how long the vacation will last, but I get stuff done while they’re away, because I never know when they’ll come back.” — Sarah Cecilia Flanigan
19. “I had to explain [my daughter’s seizures] to her 1st grade class after she had one at school. I explained like this: ‘[My daughter] has something special about her. Her brain has seizures, or, like her brother calls it, ‘her shakes.’ She is what we call epileptic. I know it’s scary, but when she has her shakes, it’s important to stay calm and go get an adult so they can help her. If you can’t find an adult, get her brother, he’ll know just what to do.’ Then, we began our conversation of what our siblings help us do and why being a ‘helping friend’ is so important.” — Crystal Wright
20. “This is how my daughter describes her sister with autism: ‘It’s like we all have a red power cord, and her cord is blue. She’s just wired differently, but she functions just fine.'” — Julie Preston Bean
21. “I tell people who ask about my son’s multiple conditions that he was in such a hurry to see the world he showed up a little early. He has some issues but he is awesome and happy and that’s what matters.” — Jessica Hirschenhofer
22. “[Living with depression] is like treading water and never reaching land.” — Barbara Winthrop
23. “We usually say something like, ‘[Our daughter] has Rett syndrome. It’s a rare neurological disorder caused by a genetic mutation which makes it hard for her to use her hands and legs properly. Sometimes her hands do things she doesn’t want them to do. She can’t speak, but she can hear you just fine and she is very smart!'” — Grace Fox
24. “[I explain my son’s] Down syndrome to the kids at his school by using an example they can relate to. I came up with the concept of two bears made out of Legos that are very similar, but with one difference — an extra chromosome or an extra ‘lego-peg.'” — Ingrid Muschta
25. “[My adult son has] severe social anxiety, depression, obsessive compulsive disorder (OCD), Tourette syndrome and is on the autism spectrum. When he was working I explained [his anxiety] to his supervisors as follows: ‘Imagine you are terrified of spiders. When you get to work, you have to wade through a giant pit of spiders. When you get to your desk, you think of nothing other then the fact that you must pass through the pit of spiders on your way home. Once home, you obsess about the fact that you have to go back tomorrow.'” — Wanda McCallin Oleson
26. “Our son is visually impaired. He has underdeveloped retinas, nystagmus and poor vision. The way I explain his nystagmus is imagine seeing everything as if it were a flip book and the only way for the images to be clear is to hold your head in a certain position. His brain then takes those images and smooths them out. So he takes longer sometimes when concentrating on things.” — Lara Young
27. “My son’s left hand never developed properly. It’s called symbrachydactly. We tell people (kids especially) that he’s got a ‘lucky fin’ just like Nemo in ‘Finding Nemo.’ There’s nothing he can’t do; it just looks a little different.” — Jamie Brenner Ponce
28. “I’m a paraplegic due to transverse myelitis, an autoimmune disorder that attacks the spinal cord. I relate it to a cat chewing on computer cables, damaging the insulation around the wires inside. My immune system has damaged the insulation around the nerve fibers in one particular place on my spinal cord, and without that insulation, the nerves can’t carry the signals properly.” — Elizabeth Churay Matherne
29. “I explain my son’s high functioning autism as something [that] enables him to do things most 5-year-olds can’t, like play checkers for an hour, have discussions about the civil and revolutionary wars and explain friction to his 3-year-old brother. My kid wouldn’t be the cool, inquisitive, patient child he is without his ‘disability.'” — Rebecca Silvern Roberts
*Some responses have been shortened and/or edited.
How do you explain you or a loved one’s disability or disorder? Let us know in the comments below.