The other day, a friend reached out to me to get advice about how she should approach talking with her children about people with disabilities. As her children were getting older, they were starting to notice subtle differences in people they saw in public, and my friend wanted to make sure she was saying and doing the right things as she taught her girls about disabilities and the people who live with them.
My first reaction was that there isn’t really one “right” way people in the special needs community can agree upon when it comes to talking about disabilities. Some people are offended by the slightest wax in semantics, while others are just happy there is a conversation taking place at all. For my part as a special needs mom, I can get irritated by all the stares and questions about how my son hurt his leg badly enough that he has to wear a brace or a cast when he’s undergoing casting therapy — especially when the unspoken (and sometimes even spoken!) implication is that it’s because I wasn’t parenting him closely enough — but at the end of the day, as emotionally rough as it sometimes is, I see those as opportunities to educate people about pediatric stroke, cerebral palsy, and hemiparesis.
In an effort to get a wider array of opinions on the subject, I took to my support group for parents of pediatric stroke survivors and children with hemiplegia, and here’s what some members had to say:
I would love for parents to make it clear to their children that being different doesn’t equal weird or scary. It’s important to know we are all different in our own ways, and that they don’t just come in physical form. Sometimes there’s differences we can’t even see. So by being accepting of differences in general, I think children would find them less questionable in the future.
I wish parents would encourage kids to ask a question if they have it….I have noticed parents whispering with young kids when they see my son’s brace. I am ready and armed with an easy to understand explanation that doesn’t make it scary or confusing.
I also encourage children to ask their questions. Just today I had a group of kids make a comment about L—-. That’s when I engaged them and explained why he was making that sound (he was crying, L—- is non-verbal). That led to a 10 minute conversation with them asking questions.
I wish people wouldn’t be scared to just ask. It’s no big deal, teach your children that asking questions is how we learn things in life!
My biggest hate is people who stare and don’t ask! I’ll gladly spread awareness if people would just ask me as pre-stroke I was admittedly completely ignorant to childhood stroke and hemiplegia.
When my kids have commented or asked a question about another person, I have just told them that everyone is different and the world would be very boring if we were all exactly the same. I also told them that I would be willing to go with them so they could introduce themselves to the person and ask if it would be okay if they asked some questions. Yesterday I was out shopping with my son who was wearing his Walkaid. A lady politely asked me if it was an insulin pump, and said she was curious because she had never seen an insulin pump on someone’s leg before. I got to educate her on the Walkaid, and then she happened to see that he was wearing his “I’m a pediatric stroke survivor t-shirt,” and I liked that she engaged him directly and asked him about it (and she also said to him that he didn’t have to answer if he didn’t want to). I appreciated the fact that she talked to us both together, instead of just talking to me and expecting me to answer for him. She also didn’t talk down to him, and thanked him for answering her questions, before she said goodbye.
Clearly, asking questions, even when it can seem awkward or even irritating to kids with disabilities and their parents, is a good idea, at least from the perspective of these parents. But what else should you keep in mind? Here are some ideas to get you started (while bearing in mind that I am just one of many people with opinions on the matter):[/nextpage] [nextpage title=”Page 2″ ]
First, know that even having this conversation with your children is huge!
So many people choose to ignore or, worse, mock people with disabilities. By opening up the lines of communication with your children early, you lessen the stigma associated with disabilities and help children feel comfortable around and accepting of people with disabilities. And this is SO IMPORTANT!
Be sure to use person-first language.
Though this one doesn’t personally irk me as much as, say, the use of the word “retarded” when referring to people with disabilities, I completely understand its importance. People with disabilities are people first, meaning they are not defined by their disabilities (or different abilities, depending on whom you ask in the special needs community). Essentially, they are people who also happen to have a disability. So instead of saying “the autistic boy,” you should say “the boy with autism.” He is, after all, a boy first who just happens to also have autism. Using person-first language helps others see people with disabilities as people above anything else rather than as walking (and sometimes not walking) disabilities in human form.
Avoid pitying people with disabilities or treating them as heroes.
There are few things more crushing to a person with a disability or parent of a child with a disability than sensing that others feel sorry for you/him/her or feel you/he/she is worthy solely because you/he/she lives with a disability. Yes, many of the things people with disabilities endure are difficult and even heartbreaking, but this doesn’t make them mere charity cases worthy only of sympathy and accolades for no other reason than the fact that they are mentally or physically different from most people.
People with disabilities want to be understood, but this is not the same as being pitied or hero-worshiped. They are so much more than the disabilities with which they live, and they want to be recognized for their accomplishments (not just because they have a disability) and even admonished for their wrongdoings (provided their wrongdoings are not a manifestation of their disabilities). They want to be treated like people and held to the same standards as everyone else (again, within reason depending on their disabilities). For a much more eloquent explanation of what I’m getting at here, watch the TED Talk below.[/nextpage] [nextpage title=”Page 3″ ]
At the same time, don’t pretend their disability doesn’t exist.
Not pitying or hero-worshiping people with disabilities is not the same as ignoring their disabilities altogether. This is similar to pretending to be blind to race or obesity. Nobody with functioning sight is blind to the fact that people come in all colors, shapes, sizes, and defining features. Neither are they blind to the fact that some people get around in a wheelchair or live with Down Syndrome.
Sometimes we think being honest about what we see and feel might be construed as insensitive, so we pretend it doesn’t exist at all. I promise, this is worse than confronting one’s feelings and questions about a disability (remember the importance of asking those questions?!). I’m not saying you should encourage your children to scream, “Hey, everybody! Look at that guy over there! He has no legs! ISN’T THAT WEIRD?!” But I am saying that you should help your children understand that their questions and feelings are normal and not something to be ashamed of. While it might be uncomfortable at first, being willing to recognize that you notice someone’s disability and asking your questions helps you to understand the person living with it and opens up the path to friendship and acceptance much more quickly.
Please don’t stare.
I understand that it can be difficult not to (heck, even my kid with disabilities stares at people with disabilities that are different from his own), but it’s crucial that you really try not to and that you encourage your children not to stare as well. People with disabilities can tell when your’e staring at them, and they know exactly why you’re doing it. It’s hurtful and alienating. Instead, think about what it is that’s causing you to stare, and either make a note to look it up when you get home or to head on over to have a friendly conversation with the person you’re tempted to stare at (provided you’ve asked them first if they’re comfortable discussing their disability with you).
While directly questioning someone about their disability or discussing it with your children in front of them might seem insensitive all on its own, there are ways to do it while still being kind. First, be careful with the terminology you use and educate yourself on words and phrases that are no longer acceptable to use when referring to people with disabilities — things like “retarded,” “crippled,” and “deaf and dumb” for starters.
Second, understand that just like anybody else in the world, people with disabilities vary when it comes to what they find acceptable to discuss and what they’re uncomfortable with. When approaching them with questions, be sure to ask them first if they’re OK with having a discussion about their disability. Also, be sure to read their body language and that of their friends or family members when interacting with complete strangers, and recognize when it’s time to end the conversation or move on to other topics.
Finally, avoid talking down to people with disabilities or pretending like they’re not even there. Just because somebody is in a wheelchair or is non-verbal doesn’t mean they can’t understand what your’e saying or that you have to speak loudly and slowly for them to interpret your meaning. Remember: People with disabilities are people first, and they’ll appreciate that you’ve taken the time to consider their feelings.
Understand that you can’t please everybody.
Unfortunately, no matter how good your intentions are and how hard you try to do things the “right way,” there are bound to be people who take issue with your approach. As long as you’re making a conscious effort to educate your children and yourselves about people with disabilities as sensitively as possible, there’s no reason to let this get you down. It’s far better to communicate with your children and answer their questions about people with disabilities than to ignore it completely, even if this means inadvertently offending someone from time to time. Open and honest communication can do so much to spread awareness, acceptance, and rapport among people, both those living with disabilities and those living without.
What other suggestions/advice do you have for parents wishing to talk with their kids about people with disabilities?[/nextpage]