Thursday, May 22, 2014

Let's play 20 questions

By Cheryl Peters

Last week with my daughter Jillian at my side a store clerk asked: "Can I ask what's wrong with her?" Seems like an honest question, right? When you're raising a child with a disability, you'd be surprised at the questions that are lobbed in your direction. Normally they're innocent, but whenever we go out as a family, we're regularly asked a barrage of questions.

My daughter Jillian is five-and-a-half years old (above right). A little spitfire of a little girl. I always knew she was paying attention whenever I answered these questions but what I didn't know was that she would take matters into her own hands.

Last week my husband was due for a phone upgrade so we headed to the mall. Jillian is enjoying independence in a chair she can self-propel. She was full of giggles and laughter as she threatened to run away from us. When Jillian was within earshot, the agent at the phone kiosk looked at me and said "Can I ask what's wrong with her?"

"...You could..." I replied. It was then that Jillian decided to speak up for herself. "What's wrong with you?" she asked. I wasn't sure how to proceed. Surely I should apologize for her, or do I? The question was posed innocently, so why did I feel embarrassed? Jillian had a point.

The agent at the kiosk said "I deserved that." So I was left wondering what do I do about this? On one hand, I'm so proud of my little girl for standing up for herself. On the other? I really would have hoped she would have picked up a little bit of manners to answer these questions.

It's times like these that I'm reminded Jillian is only five. Children at that age have little filter. I should know, I also have a typically developing older daughter, Lauren, and at seven she's just now realizing about filters.

I'm proud of Jillian for realizing she can stand up for herself. Maybe she'll show people that they shouldn't assume things about children in wheelchairs or children with disabilities in general.

This isn't the first time Jillian has been an advocate. At the ripe old age of three-and-a-half she was involved in the Children's Advisory Council at Holland Bloorview. We learned there that she never went into the ball pit because she didn't want to ask for help to get in and out. I had just assumed she didn't use the ball pit because she didn't like it. I realized I shouldn't make assumptions about her either. Because Jillian spoke up, there are now foam steps and wedges that allow kids like her to crawl into the pit on their own.

Did I handle the above question correctly? I'm still left wondering about it. In the mean time, I'll be proud and explain to Jillian that maybe next time, we could be a little bit more polite and understanding when people are asking questions.


To ask a question like that in the earshot of the person, concerned is really rude. My MIL is very confused at times these days, but is on point others. It hurt her terribly and still, when a store clerk, mouthed out, "Alzheimer's I know, bless you and her." I think it hurts anyone's feeling to hear someone asking what's wrong with a person. So good for your DD that she answered the way she does.

But then there are those who are interested, and want to help, really mean well and could help if the question is answered and a need disclosed. To shut down everyone, anyone who asks is not always the best thing to do, especially when you and your DD could use some extra consideration for things.

Nothing is "wrong" with her, is an answer to maybe answer, but she does have X which means Y. To have a condition that is clearly an issue, from needing help walking to extra explanation, a bit of understanding, can mean being willing to impart some info.

But I do like your spitfire's answer! When she is a bit older, or maybe even now, some direct answer to asauge curiousity and get some assistance might be in order. Hugs to her and you.

Jillian made excellent use of a five-year-old's prerogative!

I would let it go. Sometimes a sharp reply is the best reply. It seems a lot to ask a five year old to manage someone else's ignorance.

Hi Cheryl,

I think you did just fine. And, you're right, “Jillian does need to be polite”. People will always be curious of your daughter's disability. Most of the time, their questions are genuine and kind in nature.

I also think that Jillian's reaction may stem from a sense of people talking about her as though she wasn't there. So, maybe, after you speak to her about being polite, you could ask her, "Do you want to take turns answering people's questions –kind of like, ‘Hey Jillian, do you want to this or should I’?” This will also be good practice for those times when she finds herself without you or your husband.

I find simple answers to be best: “I was born with cerebral palsy. This means that I have trouble walking. I use a walker and a wheelchair to get around. And, other than that, I’m just like you.

I hope this helps.

Take care,

Matt Kamaratakis

Hi - what a great post - and I love your daughters response. I have a spitfire of my own who is mostly non-verbal and so is subject to these questions and worse on a regular basis - I wish she had the ability to correct them and humble them the way your daughter did. Make no mistake, although her answer was abrupt, it was also on point and that clerk will think twice about asking that question that way again to anyone else - and if your daughter has taught someone about accepting everyone and celebrating differences then bravo to her (and you because obviously the apple doesn't fall far from the tree!!). Give her the proper language as she get's older like Matt K suggested, but never hold back her ability to speak for herself - she will need this skill in spades as she gets older. Thank you so much for sharing!

I've had to catch myself from 'scolding' my son. We hear so many questions too. so many people think nothing of asking questions, especially kids. He tells them 'I was born this way' or 'God, made me this way' BUT sometimes to the same exact question he (perhaps bad day or just not in the mood) he will respond 'rudely'. One of the most shocking things for me was an older boy in a karate class, on our first visit to the class (and my son is missing an arm below his elbow, and other arm is a 'claw' hand with only pinky and thumb, and also he wears a prosthetic: which to me seems like not that big a reason for hundreds of comments). anyway, on our first free class a boy with a fairly high ranking belt (purple) came up and said to me right in front of my son 'i bet you wanted to throw him in the trash when he was born'. I was so shocked and then burst into tears (feel really silly looking back but that is what I did). I fled to bathroom and when came out my son was 'why did you cry?'. thinking he hadn't heard I said, 'oh, I was just being silly'. he said non-chalantly like it didn't bother him at all 'is it because that boy said you wanted to throw me in the trash?' In that instance he did't care other times kids might just ask 'what happened?' and he says something 'rude'.

Touche! I love her response. It works for a 5 year old! For an adult, not so much.

I've often wondered how to respond to this comment myself. The best thing I could come up with is either: I prefer not to talk about it. Or (more polite) I'm sorry but I prefer not to talk about it.

How do others handle this type of comment?

When I hear questions such as "are her legs broken?" or "what's wrong with her?" from children who truly are just asking an innocent question out of genuine curiosity, sometimes I just simply say "some people where glasses to see right? Some people use walkers and/or braces to help them walk" or similar explanations.

Your daughter has the right attitude! People are curious..I get that however, if they are going to ask direct questions like that to a 5 year old, you better be prepared for a direct answer.

I'm asked that question all the time and like your 5 year old, I ask them 'what's wrong with you?' Because I don't see anything wrong with me, and neither should your daughter. I think by pushing the question back on them it makes people think about how they have asked the question and maybe next time they should use different wording. Adults should know better in my opinion but sometimes it does come out badly.

As your daughter gets older and as she watches you answer these questions, she will become more familiar on what to say to curious people that is both polite and direct. I sometimes tell people 'everyone has a disability, you can just see mine.'

You should be very proud of her for standing up for herself! She is going to get questions like this for the rest of her life and I think people will learn a thing or two from her with her positive attitude!

Thank-you for sharing!

I agree. Nothing wrong with her answer at all, and I'm sure she schooled the asker. People really need to be more considerate.

Thank you for that piece of sunshine!

I LOVE her response and often times wish I could answer the same way. Although I know questions aren't usually asked to be malicious, but what people fail to realize that if they have that question, someone else probably does to and have asked. So they ask once yet you've fielded the same question 5-10 by 5-10 strangers in one day...enough is enough. They are a person. They may look and be different. It's ok; let's move on...