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:
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:
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!
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