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29 Ways to Describe a Disability to Someone Who Doesn’t Understand It


The Mighty Staff

Aug 04, 2015

·          

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:

1. “My daughter has dyspraxia, which is poor motor planning because of slow neural transmissions. I describe her to others as being a super-computer with a dial-up modem.” — Stephanie Bruttig Brander

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


Read more: http://themighty.com/2015/08/29-ways-to-describe-a-disability-to-someone-who-doesnt-understand-it-5/#ixzz3kNXh7wa4


03.09.2015

All news:

December 3rd in Sabac
2018 International Day of Persons with Disabilities – IDPD
Training for persons with disability
International Belgrade Book Fair
Regional Conference "Participation of Persons with Disabilities in Politics and Elections",
Project promotion in Sabac
Training for PA in Belgrade
Partnership - aims and challenges
Strategic planning
Annual Assembly
PA Training
ReLOaD Programmee
IL DAY 2018
What is good personal assistance made of?
PA service in Cacak
BIDF meeting
PA Training
Violence against women
Risk of Poverty and Social Exclusion higher twice than EU average!
New CIL local branch
PA Service in Irig
Citizen participation and inclusive decision-making
PA training
Seventh Assembly of CIL Serbia
Training for PAs in 2016
NATIONAL CONFERENCE ON POLITICAL PARTICIPATION OF PWDs IN SERBIA
Signed LDAP
About discrimination
International Day of Persons with Disability
PA Service in Belgrade
Study visit to UK Parliament
American Ambassador visited CIL Serbia
Support to civil society organizations in drafting Local Action Plans in area of disability
Terms to Avoid When Writing About Disability
Employment of Persons with Disabilities
Parliamentary Working Group on Disability established
Training for PAs in Velika Plana
Project promotion
Round table in Smederevo
Round tables
Tomorrow Is Too Long to Wait for Inclusion
International Day of PWDs
29 Ways to Describe a Disability to Someone Who Doesn’t Understand It
CIL Serbia realised another PA training
Sectoral Round tables
Why Using a Wheelchair Is the Opposite of Giving Up
The 3 Words I Want Every Single Hospital Employee to Hear
8 ‘Helpful’ Things That Don’t Really Help People With Disabilities
When a Little Girl Felt Sorry for My Son
PA training in Vrsac
7 Microaggressions Disabled Folks Face at the Doctor’s Office—and 6 Ways to Fix Them
The 12 Pillars of Independent Living
The social model of disability
Hidden Limits
Dear Society, Why Don’t You See Different as Beautiful?
Myths and Facts About People with Disabilities
International Day of Persons with Disabilities, 3 December 2014
Licencing
EU Delegation in Serbia supported the increasing of political participation of persons with disabilities and the impact on policy development in Serbia
National Conference
Accredited Program of Education for Personal Assistants working in five cities in Serbia
CIL Serbia held its Presidency and the Assembly meetings
Jointly forces for economic and political empowerment of persons with disability
With joint forces of political and economic empowerment of persons with disabilities
"Public sector for all citizens"
Combining the strengths: Jointly for political and economic empowerment of persons with disabilities - EIDHR
Combining the strengths: Jointly for political and economic empowerment of persons with disabilities - EIDHR
Combining the strengths: Jointly for political and economic empowerment of persons with disabilities - EIDHR
"Walk of Shame on 5 May" - Save the date
Autism Awareness
SEMINAR – COMMUNICATION AND NEGOTIATING SKILLS
Donation of natural supplements
PROUD OF WHAT WE DO IN PAST 10 YEARS ( and a few more)
Establishing an informal parliamentary group for improving the status, position and quality of life of persons with disabilities ( PWDs Group )
International Day of persons with disability marked in Serbian National Assembly
DISABILITY IS NOT THE QUESTION OF CHOICE – YOUR ATTITUDE IS
Advocacy and local support networks building
Workshop on social enterpreneurship
Stop Saying 'Wheelchair-Bound' And Other Outdated And Offensive Terms To People With Disabilities
ANTI POVERTY NETWORK SERBIA



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