Talking to your Children About Disability

Our kids have started school in a new district this year and as part of that transition was making sure Lamp’s new school would be willing to let someone come in and educate each of the classrooms about Lamp and her unique differences. We did this when she started pre-school and again in Kindergarten. I really hope teaching children about disability is something we can do every year. The difference between this year and past years is that I got to be the one to do these presentations to every class. It was an amazing experience. It was like turning on a light switch for these kids and I was thrilled to be the one to help turn that switch on.

The first day of school I went to Lamp’s class and talked to them. (Lamp was not in the classroom, nor did she want to be in the classroom, but she did want me to come and talk to her class.) However, as we walked into school that morning she was a little nervous, as was I. Lots of kids staring, but no one smiling or introducing themselves. THEN, a little girl in her class walked up to her and said, “Hi, I’m Sally. I’ve heard a lot about you. I hear you can write with your feet.”BOOM BOOM DYNAMITE!Lamp smiled, I smiled and this little girl made Lamp feel immediately at ease, and she was a great example to the rest of the class. I then gave the presentation to Lamp’s class and I watched that switch turn on in their brains. Oh, that’s why she looks like that. Oh, that’s why she drives a wheelchair. Oh, oh, oh! I believe her first day of school went well. For various reasons, I wasn’t giving the talk to the other students in her school until the third day of school. So while the kids in her class knew about Lamp, the other kids in the school did not for the first 2 days.

This is how her second day of school went: On the second day of school when I went to pick her up, she said school was good and she was her normal, positive self. When we got home, however she made a sort of off the cuff comment and said, “Well there was one boy…and another boy…and then this girl…and this other girl…” She ended up telling me about 4 different kids who did everything from calling her a names to her face, to pointing and whispering about her within ear shot.

That was just one day in a new (and small school) where at least 4 different kids who didn’t know what to think or do, said and did hurtful and rude things. I’m sure these are great kids who come from great families. I’m sure their parents have even talked to them about being nice and treating other people with kindness. But in terms of disability it is simply not enough to tell kids to be nice and kind. Especially when their young and inexperienced minds have never encountered someone with differences before. They have questions! And concerns! And how’s and why’s and all sorts of stuff. It’s really, really hard to remember to “be nice” when you’re also trying to comprehend wheelchairs, limb differences, atypical movements or sounds, leg braces, walkers or any number of things that set our special needs kids apart. Which is why I appreciated the little girl Sally from day one because it was clear that her parents didn’t just tell her to “be nice” they actually talked to her about Lamp and her differences. Education is the key–the night and day difference–to our children treating their disabled peers with dignity, kindness and inclusion.

Once again, after I gave my presentation to each and every class at Lamp’s new school I saw those light bulbs go on, I saw–actually saw–on their faces and in their countenances the difference between knowing and not knowing. The difference between seeing Lamp as other, and seeing her as one of them. And that difference is everything.

In the past I’ve talked about How to Navigate a Special Needs Encounter with your child if you meet another child face to face with disabilities. This is a guide for having a talk with your child in private as a preemptive measure to meeting a person who is disabled. A lot of these points are the same, just presented in a slightly different manner.

How to Talk to Your Child About People with Disabilities
1) Everyone is different.
A great way to start this discussion is to talk about common differences like eye color, hair color and of course skin color and to point out that everyone is born just a little differently. Then you can bring in some slightly bigger differences like asking if they know of anyone who wears glasses (maybe they do!), or maybe you have a family member who uses a walker or a cane. Finally, you can say that some people are born with something called a disability. A disability is when your body or your mind is different from other people’s bodies and minds. Having a disability isn’t bad, sad, wrong or strange, it’s just different. We often say, “Lamp was just born this way” and “This is how God made her.” You can show them pictures of individuals who might look a little different than they look and teach them a little about some of these differences. You can show them Lamp who has limb differences, Catherine who has muscular dystrophy, Lily who has Down syndrome, Zayn who has dwarfism, Brenna who has Harlequin Ichthyosis, Noah who has trisomy 8 and cerebral palsy, Elizabeth who has one leg, Sarah who has Apert syndrome, cute little Ruby and many, many more.

This is also a great time to explain that some differences we can see on the outside, but some differences are on the inside and we can’t see them. Like Cole who has epilepsy, Luke who is autistic, or Wyatt who has severe food allergies and again, many, many more.

Of course not everyone who is disabled is “born that way.” Disability can happen through accidents, illness and other factors as well. It’s up to you how deep you want to go into this discussion. For a first time conversation I try to keep it basic.

2) Questions are OK, as Long as You’re Kind
The emotions that a child feels when seeing or meeting another child or person with special needs can range from curious, to nervous, to scared, to just plain confused. Let your child know that if they have a question about a person who is different than them, it’s OK and to come talk to you or another trusted adult about their questions. Please note, this is not an open invitation to ask disabled people about their disability. Of course some disabled people and kids are OK answering questions, but many are not. Of course most people don’t want you shushing your child and walking away, it’s OK to say something like “some people are just born differently, just like we all have different hair, eye color, etc. We can talk more about this when we get home, but just know it’s OK to be different.” when you’re in the moment.

While it’s important not to shame kids for their curiosity, it’s also very important to let children know in no uncertain terms that certain things are not OK. It’s not OK to use rude words like gross, weird, creepy, etc. Even if your child does this innocently–“she’s weird!” “Yuck! Why does her arm look like that?”–please correct them. For example, “That’s not a nice word and that might hurt her feelings” or “that would really hurt your feelings if someone laughed at you.” or “She’s different than you, but she’s not weird.” Of course it is also not OK to point, stare, laugh, call names, make fun of or tease a person with a disability. These boundaries must be laid out for kids. Curiosity can quickly turn to cruelty if left in a vacuum of ignorance and if we don’t teach them through our words and actions exactly how we treat other people.

3) Find Common Ground
Once your child has some understanding that some people are just born differently now is a great time to find some common ground. You can point out that children with disabilities like to do the same things that other kids like to do–they like to play with toys, watch Disney shows, eat ice cream, etc. Establishing this sameness is KEY. This is when the light goes on and children realize, oh… she’s just another kid, like me. We are more alike than different!4) People with disabilities sometimes have different and unique abilities
As Lamp’s mom I try to emphasize that she has different abilities. Yes there are some things she can’t do, like walking which is why she drives a power chair, but wow, she can drive a chair! Or I always tell them, she might not be able to do somethings you can do but guess what? Lamp can write with her feet! This is when you see the jaws drop–literally. Again, it’s super important for kids to understand from a young age that being disabled means you still have abilities, but they might be different or unique compared to other people. Try to help your child see a disabled person’s strengths. Here are a few great videos illustrating this point.

The 2016 Paralympics Promo Video is an amazing demonstration of unique abilities. Also love this one from 2012.

Of course it’s also important that we don’t play into the victim/hero stereotype of disability and insist that a disabled person has to “overcome” their disabilities and be some sort of “superhuman” to borrow a phrase from the Paralympics. People with disabilities are also just regular people and accomplish a lot of things that regular people do. You could show your kids that children with Down syndrome go to college too, teach preschool, and that people without arms have regular jobs like Richie Parker of NASCAR or Jessica Cox who is a pilot. The point is we all have strengths and weaknesses, and people with disabilities are no different.

5) Encourage your child to build a genuine friendship with their disabled peers.
Building an actual friendship is much more than just waving hi, “helping” a child with a disability at recess or even sitting by them at lunch occasionally. And it is certainly more than inviting a disabled peer to prom–inviting a disabled classmate to prom shouldn’t be newsworthy or remarkable. Kids with disabilities are as multifaceted as any person and deserve real, loving, deep, messy, funny, relationships. I love that kids want to be kind to Lamp, but none of us want a world of people who simply say hi to us, but never invite us over to play, or ask us questions about ourselves, or make silly faces to each other when the teacher isn’t looking. Invite our kids to parties even when you’re not sure it’s logistically feasible, set up play dates and allow for the real ups and downs of friendship. True inclusion is true friendship.

Thank you so much for taking the time to read this. And thank you even more for hopefully taking the time to have this conversation with your kids about disability in general and their disabled peers specifically. Please let me know if you have any questions or comments below. Once again keep in mind that I don’t have all the answers and I don’t speak for the entire disability community. But this is my basic outline and I have seen it work wonders and I hope it will do the same for you.

XO,
Miggy