"Don't rush your child over to say hi. My sons’ appearances in public are not your 'teachable moments.'”
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 disabled people, but after consulting with several parents in similar circumstances, I thought I would offer some advice on what to do when your child points, stares or says something inappropriate about a disabled person in public and 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 parents or people with disabilities.
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 the attention to their wheelchairs, or comments that make them different from other kids. I find not many comments upset me, except the time someone sat near Fulton — who was in his wheelchair — and 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 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 6, 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?”
Perhaps you’d like to melt into the ground with your child and disappear (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.
Tell them 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 do the same.
Conversely, the worst thing to do would be to get angry at your child, shush them, and then hurry away from the person with a disability like they were a leper to be avoided at all costs.
3. If your child has questions, you can politely ask the person if your child may ask them.
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 disabled. 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 equals. 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.
Don’t ignoring the person with a disability who used a wheelchair by 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.
Talk about what makes your child and the child with a disability (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 typical kid things. They immediately clam up when the conversation revolves around their chairs, their leg braces or anything else that sets them apart.
Don’t talk about the person with a disability in negative terms, 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 for someone can be 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 said they’d pray for you? There you were, just enjoying you day, feeling fine when you were reminded that, “Oh yeah, 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 disabled 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? 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.
It’s really about using common sense and common courtesy, but I totally understand how in the heat of the moment, when your child points and blurts out something embarrassing, it’s easy to freeze and do something out of character. Tuck these suggestions away in your memory bank for when the inevitable happens so you can be prepared.