Emma and Hope
Cerebral Palsy & Blindness
Do's
1. Talk with us. Imagine being invisible. You're in a crowded room and you desparately want to join in the conversation but nobody notices you're there. That's what it's like when you're different because of a disability. A good place to start is, "Hey, how about those Mets!" In other words, underneath our disability we're just like you and we like to talk about the same things you like to talk about, sports, life, family, etc.
2. Invite us. Like the mother who didn't invite the boy in a wheelchair to her son's birthday party because she didn't want the child to feel excluded when the other children did things he could not, unintentional exclusion is everywhere and it hurts. It's infinitely better to invite us and let us say it's not workable. Even if we can't participate, the fact that you asked will be a treasure many of us remember for a lifetime. You'd be surprised too at how many times we can participate.
3. Ask questions (just not too personal). You wouldn't go up to someone else and ask if they have sex like everyone else so probably not a good idea to ask the same question of someone in a wheelchair (yeah, we know you're curious). A good way to break the ice is to say, "I'm really quite uninformed, can you help me understand about your situation?" This approach has two advantages. You're avoiding the problem of talking down to us and you're leaving it up to us what to share.
4. Follow up. We get a lot of, "Hi, how are you," and then quickly move on, as in people are satisfying their obligation to be polite but nothing more. If you really want to say this is for real and you actually care, end the conversation with an invitation to talk or get together again.
Note: Have you noticed all these things are suspiciously like good advice for making friends? That's because we're just like everyone else so what works best is treating us like everyone else.
5. Replace the word, retarded, with "cognitively impaired" or "intellectual disability" and replace "normal" with "typical". This is an easy change that will score you huge points with the disabled and immediately identify you as someone sensitive to their needs.
Don'ts
1. Don't try to help us with your advice. You may mean well but it's offensive to us and on so many levels. Resist the urge. Don't do it.
2. Don't tell us you understand. Unless you have a severely disabled child, you don't. You can't. Better to say, "I want to understand. Can you help me?"
3. Don't tell us God can heal. We already know that and, although most of us believe He can, it is plain to see He hasn't. It also denies the fact that God may have a higher purpose for the disabled than sitting around waiting to be healed. Can you think of anyone better qualified to teach us about persevearance, determination, and overcoming in the face of adversity?
4. Don't compare me or my child with someone you know. It comes across as condescending and belittling.
5. Don't touch. I'd be put in jail if I fondled other people's daughters the way they touch mine. Just because she's in a wheelchair doesn't mean it's OK. We're human beings and we don't want our space violated any more than you do. We are often more at risk of every day germs too.
6. Don't say, "If you need anything just ask." We hear that all the time and rarely do they mean it. If you're serious, make a specific offer, something like, "How about if I come fix dinner for you Tuesday night?"
7. Eliminate the words, spaz and retard, from your vocabulary. When you say these words someone hurts.
8. Don't tell us, "God surely knew what he was doing when he chose you to be _______'s parent." Every year numerous disabled children are abused, neglected and outright killed by their parents. If God chose me then he also chose them. Statements like this just come across as better thee than me.
It's only human nature to want to be around people like ourselves so, if we don't practice intentional inclusion, we automatically get unintentional exclusion. Exclusion hurts. It is the biggest problem affecting the disabled and the majority of it is unintentional .
Note to those in the disability community
Lighten up! Is it any wonder people exclude us when we're so politically correct we take offense at everything? There's a whole generation out there that doesn't know any other term than mentally retarded to describe what we now call cognitively impaired or intellectual disability. Their intentions are good but they're scared of saying the wrong thing.
When we take offense or immediately try to correct someone we shut down the only chance we'll ever have of helping them to understand a better way. How much better to open a dialogue, establish are friendship, and then, when the time is right, explain some of the more sensitive ways we now use to talk about issues affecting the disabled.
Things people have actually said to us
1. After listening to me explain my profoundly disabled daughter's disabilities, "At least she's healthy. That's the important thing."
2. After learning Emma is 11 months older than Hope and both have feeding tubes, "Wow, I didn't know twins could be born that far apart".
3. After learning Emma is legally blind, "I don't know how to tell you this but did you know your daughter can see?"
4. After complaining that my disabled daughter had been excluded, leaders of the Christmas program accused me of "sinful gossip."
5. Referring to Emma, "She has cuckoo eyes!"
6. "It would have been better for both of you if she had died at birth."
7. "Maybe this is God's judgement on you."
8. "At least your other children are normal."
9. "You can always have another baby."
10. "It's because of people like you the world is in such a mess."
11. "What that kid needs is a good spanking."
12. "What's WRONG with her?"
13. "People like you are a burden on society."
14. "The reason she hasn't been healed is you don't have enough faith."
15. After hearing me excitedly share the progress Emma's made, "It would be better for Emma if she didn't make any progress."
16. As they walk away without offering to help, "God never gives you more than you can handle."
17. "It was better years ago when these kids died at birth."
18. "It's actually a blessing she's retarded because that way she's not aware of what she's missing."
19. "She doesn't look disabled." or "She doesn't look retarded."
20. "I heard she was hideously deformed."
21. After learning I'm a stay-at-home dad raising two special needs kids, "You've got it easy because you don't have to go to work."
22. Comment after they see me photographing them illegally parked in a handicap space, "You ought to be ashamed of yourself."
23. "She'll outgrow it."
24. Bus driver, "Are you sure you want to use the tie downs on the wheelchair?"
25. After checking into a hotel with two special needs kids going psycho, "Wow. You need some of my marijuana."
26. Police officer referring to Hope's eczema, "How'd she get these injuries?"
27. "Hey, retard, get out of the way!"
28. Public bus driver looking down the steps at my daughter in her wheelchair, "Do you need the wheelchair lift?"
29. Someone responding to my disabled daughter crying, "That makes me mad!" or "Can't you shut her up?"
30. From a paid provider, referring to Emma and others like her, "I'm tired of having to haul them around."
31. Referred to children like Emma in care facilities as "inmates".
32. The most common thing people say to us: Nothing. They treat us like we're invisible and ignore us.
Unintentional Exclusion is the biggest problem affecting the disabled
Exclusion: Some places are proud to open their doors to the disabled but, once inside, it's like being in the 1960's and being told, you don't have to sit in the back of the bus any more but don't get any ideas about sitting in the seat next to me. Then you discover the only place there are any rows they don't occupy are in the back of the bus. That's today's exclusion, unintentional and often in denial. Other places say, sit any place you like and we'll come sit with you. That's inclusion.
I once took Emma to an internationally known disability organization and found one of their employees illegally parked in the handicap parking space we needed to unload Emma's wheelchair. When I complained the employee's manager defended the employee and said, referring to the handicap parking laws, "We're taking a break from that today."
I once complained about a church with a disability ministry that, although it was unintentional, Emma had been excluded fom their Christmas program. They responded by sending me a letter calling me names and accusing me of defaming their organization.
Exclusion is everywhere, even among those who profess to be dedicated to the rights of the disabled and, whether it's intentional or not, it hurts. If you really want to make a difference, practice inclusion.
