It happened every time I took my family out in public; stares, open mouths, finger pointing, awkward conversations and personal questions. And then my fourth, and soon fifth, children added their wheelchairs to the large family traveling circus and things got even worse.
I’m hardly an expert in how to properly act around handicap people, but I thought I would offer, after consulting with several parents in similar circumstances, some advice on 1. what to do when your child points/ stares/ says something really embarrassing about a disabled person in public and 2. how disabled people and their families prefer to be approached in public…if at all.
1. First and foremost, I can’t speak for all special needs parents, handicap people and their caregivers. Everyone is different and responds to words and actions differently. For example, I read about one father who was angered every time someone complimented his son on how well he drove his wheelchair. That would never anger me as a parent, but I know Fulton and Teddy do not like all the attention to be on their wheelchairs, or, what makes them different from other kids. I find not many comments upset me- except the time someone seated near Fulton (in his wheelchair) loudly asked “Can he walk?” Oh, and the other time someone said “He’ll be happier in heaven”, after saying he got SMA from vaccines.
So please, if you follow some of my advice and someone still gets mad at you, realize that what you’ve said or done has touched a nerve in a way you can’t understand. Don’t assume everyone will react the same way and try not to take it personally.
2. Imagine your child, younger than six, is standing in front of a person in a wheelchair, mouth open, finger pointed and utters something like, “What is wrong with this scary looking man????”
Ideally, you’d like to just melt into the ground with your child and disappear off the face of the earth (seriously, I’ve been on this end of the conversation too). But as that is usually not an option I recommend the following:
- Remind your child that staring and pointing at anyone is bad manners.
- That nothing is “wrong” with this person; they just use a wheelchair (walker, scooter, leg braces, etc.) to help them get around.
- If the person in the chair is still there, you can smile at him/her and then ask your child if they’d like to say hi. Don’t force your child to do so. If they say hi, and the person says hi, great. If the child doesn’t say hi, you can still do so and then continue going about your business and let the other person go on his/ her merry way as well.
- Conversely, the worst thing to do would be to get angry at your child, shush them, and then hurry away from the other person like they were a leper to be avoided at all costs. (Rebecca and Ella sum it up nicely here.)
3. You don’t have to have some long heart to heart discussion right then and there with your child OR the other person. If your child has more questions, you can politely ask the person if your child may ask them some questions. The other person may or may not have time to “spread awareness” at that point in time. If you’re not the type of person to strike up random conversations with people in public, you shouldn’t feel the need to do so with someone just because they’re handicap. In fact, please DO NOT go out of your way to have your child “make friends” with the child or adult in the wheelchair. Fulton and Teddy want people to see them as normal. When you rush your child over to say hi, you’re actually making my sons stand out when all they want to do is blend in. My sons’ appearances in public are not your “teachable moments”.
4. Most people will forgive the innocent looks and questions of a child. And parents, you can set a great example for your child by:
- Not ignoring the handicap person in the chair and only talking to the parent or caregiver. This implies that you think the person in the chair cannot answer your questions. Please direct your questions or conversation to the person in the chair unless directed otherwise.
- Talk about what makes your child and the handicap child or adult similar. “Look, you’re both wearing Marvel characters on your t-shirts!” Fulton and Teddy love when kids come up and just start talking about Star Wars, or Minecraft or other normal kid things. They immediately clam up when the conversation revolves around their chairs, their leg braces or anything else that sets them apart.
- Talking about the person in negative terms, or expressing only pity or sadness. Choose your words wisely. Disabled people aren’t really “sick” unless they’ve got a head cold. Other examples: “What is wrong with him?” “He must be so unhappy stuck in that chair.” “What is his life expectancy?” “I knew someone with your same disease. She died. It was awful.” “I’m so sorry. I will pray for you.”*
5. *YES, even expressing the desire to pray can seem negative. I mean, how would you feel if you were walking down the street, minding your own business, whistling a tune, when some stranger stopped you, asked what was wrong with you and then shook their head sadly and then said they’d pray for you? There you were, just enjoying you day, feeling fine when you were reminded that, “Oh yeah, I have this sucky disease that will probably kill me. Everyone thinks my life is awful and can’t imagine being in my shoes.” DO YOU STILL FEEL LIKE WHISTLING?!?
By all means, pray if you feel called, but understand many handicap people are happy and don’t need a miraculous healing to enjoy life any more than they already do. Do I want (and pray for ) a cure for SMA? Hells yes. But do my boys and I sit around thinking about how much better life would be if they were cured. No. We’re too busy loving the life we have.
6. KEEP YOUR HANDS TO YOURSELF (and make sure your child does the same.) People instinctively want to touch Fulton on the head or hand. Can you imagine how it must feel to have strangers come out of the blue and touch you while you can’t get away? Fulton is not a lucky charm, relic or person in need of a comforting touch (and if he did need a comforting touch, it would be from me, his mother, and not you, random person with sad eyes.) If you would not come up and pat me, my husband, or say, my 12 year old son on the head, please do not touch Fulton and Teddy.
Imagine trying to run away from someone but they kept grabbing your shoulders and directing you towards them. That’s how it feels when a child grabs the joystick and tries to drive Fulton’s and Teddy’s chairs. (Neither are strong enough to push a child’s hand away.) So if you’re talking to someone in a powered chair or scooter, make sure your young child understands not to touch. Kids love power chairs; I get it, there’s buttons, lights, screens, and joysticks and they go so fast. But they’re not toys, and children can get injured if they grab someone’s joystick and drive the chair into their own feet or legs. (And make sure your child asks a person in a manual chair for permission before they start pushing them around.)
7. Other great blog posts about this topic:
Want to Know What it’s Like to Go Out in Public When Your Child Uses a Wheelchair? – What Do You Do Dear?
Don’t Stop Staring – Laughing At My Nightmare (language warning)
#JustActNormally – Words I Wheel By
If you think this post could benefit anyone- please share! I’ve never had so many people ask me to write about the same question, so I’m sure many of your Facebook friends or Twitter followers would find this post useful too!
Let me know how your August is starting out! Write it down then link it up below! Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Thanks for this post! If we ever have a situation like #2 (I don’t think it’s ever happened with a wheelchair, but it has happened with an overweight person and a bald person, and probably others I can’t remember) and they are close enough to hear it, I apologize for my child before ushering them away.
I also learned after the first time to tell them “If you notice something about someone and you want to tell me about it, please whisper it to me.” It doesn’t happen nearly as much anymore!
Lots of Yeses from me here, and I’m not even IN a wheelchair….I have “invisible” disabilities. But a few things go across lines: TALK TO ME, instead of whoever is with me–sometimes when people find out I’m hearing impaired, and my parents or a friend is with me, they will talk to THAT person, instead of talking to me, in the third person. “Does she want anything?” Um, how’s about you ask the SHE.
And yes on not being sick! Geezy pete!
Thank you so much for giving us your perspective and experience! I think it’s so helpful to hear from you, as a mother who deals with people’s weird reactions, because people who don’t have disabilities probably all have their ideas of what they *think* is the best way to react, which isn’t necessarily going to be something that you or your boys appreciate. I really like how you mention, in particular, pointing out to kids something similar between them and the handicapped person.
Thanks so much Kelly for sharing this. It is truly helpful to hear from a mother who deals with this regularly. Like Jenny, in an earlier comment, I have had this happen with overweight people and other situations I can’t think of right now – but asking them to whisper it to me or talk with me about it later has really helped.
One thing we’ve worked on with our daughter is addressing the issue before it happens – we regularly visit a nursing home and before we go there we talk about how sometimes people need different tools to help them do things. Then when we’re at the nursing home, we get fewer questions and the questions are more about what the different walkers, wheelchairs, etc. help people do rather than about “what’s wrong” with that person.
I also think intentional exposure to people who are different (different races, different abilities, different appearances), whether it be through books or TV shows is a great thing.
Thanks this a great read as my kids are very interested in wheelchairs. I usually tell them that wheelchairs are a special type of bike as they are only 3 and 1 and it seems like the closest comparison. They usually get excited about them similar to bikes, motorcycles etc
Thank you for this post! This is so helpful to me as a parent of two very curious children, and one who is extremely conversational with strangers.
Fulton and Teddy should tell that creepy Aunt of theirs to stop covering their faces with lipstick smooches.
Kelly, I was wondering if you’d seen the news about the Jerika Bolen case. (For those who aren’t familiar with her, she’s a 14-year-old girl with SMA Type 2 who wanted to go to prom before she takes herself off the ventilator later this year.) I’d love to read a post about your thoughts on this.
Yes, I’m familiar with this story. I don’t plan on writing a whole post, though I will share my thoughts here. First, the media reports state that Jerika is suffering with SMA, when in fact she is suffering from severe pain related to numerous surgeries she’s had in the last couple years. SMA is not directly causing her pain. Most people with SMA of any type are not affected with the type of pain she is describing. Second, according to one article, she has pain medicine but chooses not to take it unless her pain reaches “between and 8 or 10” because the medicines are “negatively affecting her body.” Exactly how, we don’t know, but despite this pain she was able to attend camp, go to school, get up in her wheelchair and drive around, interact with nurses and her family and many other things. I am not questioning her pain, but the fact that it inhibits her quality of life. Third, the articles state she is on the highest setting on her “vent”. This is a vague term. She is not wearing a bipap mask on her face in any of her pictures, nor does she appear to have a trach (breathing support that goes directly into her windpipe through her throat). I can only assume she only uses breathing support at night, the same as Fulton. His bipap machine could also be called a ventilator. To say she plans to kill herself by going off her vent is confusing to me because if she only requires breathing support at night, I don’t know how quickly she will die when deprived of it, since she can go all day without breathing support. I worry that she will actually be deprived of food and water and that is the pain the morphine will mask, but I have no knowledge of this- it is only my own private concern. Fourth, Jerika is a 14 year old child. No 14 year old child who expresses a desire to die should be applauded as a hero. Rather than getting treatment for depression, Jerika is getting the message from the media that her death is a brave and noble deed, something to be celebrated, rather than hearing that she is valuable to this world as she is. I wonder if she was suffering with another painful condition such as juvenile arthritis or Crohn’s disease or even cancer if people would rally around her death wish, rather than seek to convince her that life is worth living. Her death will send a dangerous message that if you’re young, disabled and suffering, you do the world a favor by ending your life. Jerika and her family need our prayers. I pray she has a change of heart, and a change of doctors who work towards making her more comfortable and helping her depression, rather than endorsing her death.
This is super helpful! I always like hearing from people with disabilities, or at least their parents/family members directly to know how best to handle those types of situations.
I’d heard before not to shush kids when they’re curious so I’ve always tried to not do that. In fact just yesterday at Staples a woman and her daughter came in for school supplies, her daughter was in a powered wheelchair and my 3 year old and 5 year old were of course intrigued and commented on it. I just said “oh, yeah, isn’t that cool? Yes it has a stick that steers it” and went back to my shopping. I find they do better when I just answer their questions right there rather than trying to avoid their questions.
We have the opposite problem with our daughter who has invisible special needs. People talk to her like a typical 14 year old and she’s often left baffled and not knowing what they’re saying because she’s profoundly deaf among other things and they don’t realize she needs to read their lips to understand them. I try to tell people at the pool that she truly cannot hear them (no aids in the pool obviously) but they consistently try to talk to her and then get frustrated when she doesn’t respond or responds oddly because she misheard them.
Found this by way of your link to my blog post and I have to say, I quite appreciate how you framed your guidance on the issue. This is a solid etiquette post that I think will really help parents think carefully about how to handle when their child encounters someone disabled.
Some truly great information, Glad I noticed this.
“DO YOU STILL FEEL LIKE WHISTLING?!?” Best. Line. Ever. XD
Love this! Thank you for showing people a better way! We found our own way to help people learn a better way to approach my son and anyone else who may look a little different and the difference in the kinds of public interactions has been amazing. After witnessing a parking lot beating, we decided it was up to us to find ways to diffuse the embarrassment that parents feel when their children express genuine and (most times) innocent curiosity. We used to dread going out in public until we found what worked for us. I guess we have to look at it as our added burden, to try to teach people a gentler, more positive way. And you have pretty much summed it all up in just a few paragraphs. Very helpful!
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