One of my favourite things to witness is the look on a parent’s face when their child starts asking me questions about my wheelchair. As a parent myself I know the exact feeling of dread that they are experiencing. The unpredictable nature of a child’s curious mind can be a stressful thing. I am not easily offended and love having children ask me questions while they try to wrap their brains around what they are seeing. I have yet to meet another wheelchair user who discourages questions from a child. Even so, I’m sure a lot of people have walked away from me wondering exactly how to explain a spinal cord injury to their child and answer their questions in a way they will understand.
In all honesty, I’ve been spending a lot of time trying to figure out the best way to make this injury make sense to children. My own kids are immersed in our life so they have a fairly thorough understanding of it (at least I think they do). However for many children it is a very foreign thing. Children see my wheelchair and it is strange to them; it is not something that is part of their everyday experiences. Their very correct observation is that my legs don’t work but when they inquire why, I always feel like my explanation is lacking. It seems so easy and straight-forward to explain how a broken leg or a broken arm affects those particular limbs but attempting to explain that my legs are useless because I broke my back seems to be counter-intuitive.
But the number of things to understand about the body before even starting to explain the injury can be overwhelming. What powers our bodies? How do our legs move? How do our hands make a fist? All of the movements in our body are powered by signals that come from our brain and travel down our spine in our spinal cord. Without continuing to get too technical (I promise to be brief) the spine consists of 33 vertebrae divided into 5 sections and each vertebra represents a level of the spinal cord. Each level of the spinal cord is responsible for relaying messages from the brain to different areas of the body. But the technical explanations can be a bit dull so let’s talk Christmas lights instead!
In reality, all of the 33 levels of the spinal cord would be represented by their own strand of Christmas lights. But in this example, we are going to imagine just three strings of lights that represent the entire spinal cord from the neck all the way down to the tailbone. Each string of lights is plugged into the next with the final one being plugged into the wall. The wall outlet is where the electricity comes from just like the human brain is where the signals for our body emanate. With all the strings of lights attached properly to one another, they all light up as expected as the electricity flows through the cord. The spinal cord in most people is just like the working lights: attached properly and completely intact allowing for the signals from our brain to reach our entire body. But for some people, people like me, the spinal cord has a bit of a glitch.
If you take your lights and disconnect the very last string, the two strands before will continue to shine brightly while the third goes dark. The electricity can no longer reach
the last string of lights and, without the electricity, the bulbs cannot turn on. When a person sustains an injury to their spinal cord, it can be like that area of the cord gets unplugged and, therefore, the signals from the brain cannot reach it. In turn, the areas of the body that receive their messages from that particular area of the spinal cord (like my legs for instance) go dark and no longer function.
If we had all three strings connected and glowing once again and disconnected only the second string from the first, what would happen? The first string would stay bright while the second and third string would go black, despite the fact the connection between those last two strings is still intact and all of the bulbs are still good. The electricity can’t get past that plug that is no longer connected so all of the lights below no longer function like they should.
It works the same in the spinal cord. The higher up you injure your spinal cord, the less function you are left with in your body because the signals can’t travel there. Of course every spinal cord injury is different and some people recover to a much greater extent than others. I’m just giving you the basics.
Obviously a spinal cord injury is not the only reason someone might find themselves in a wheelchair. There are many different types of people who could cause our children to wonder things. But allowing them to explore their natural curiosities is what helps them learn. How can they learn about all the differences that make up the people in our world if they don’t ask questions? Guaranteed, at one point or another they will say something that causes you to turn red and even apologize, but most people have a lot of grace for children. It is the questions that spark conversation. For instance, our daughter, at two years old, looked at a man nearby who was wearing a turban and said “Look it’s Aladdin”. Yep. Awesome. But that was one of the first opportunities we had with her to talk about cultural differences and equality. And if we, as the parents, don’t have the answers for them, that is okay too. It is okay for us to tell them that we can look it up together and both learn something.
I don’t know much about other disabilities, only my own. I do know that, no matter what, people should always be treated with respect. It is never too soon to teach children to see beyond appearances and discover the person underneath. Even if the lights have gone out below my injury, they are still on everywhere else; I am still human. I want to help children understand so that they grow up with a better idea of what it is like to be different than they are. The more they understand the less they have to be afraid and unsure of. Let them ask questions and now (hopefully) you know how to answer one of them a little bit better.
Codi very good nice and easy to understand how to explain to kids thanks.
Thanks for sharing and with children to the more people share these things the more children are able to understand. And in turn grow up more accepting of different disabilities
Hi Codi – I just happened on your blog and really love your writing. I’ve always been a wheelchair user (well – had polio when I was 6 weeks old, so…..not too much of a before & after for me). I really know nothing other than the wheeling world – even though there is so much more accessibility now than there was in the “olden days”! Adults rarely ask anything and sometimes kids don’t either. Being eye level with a lot of them, I sometimes wonder if they realize I’m an adult…..I’ve had them ask about my room, toys, what I play with! OK – that’s always interesting! But, when they do I just tell them some age appropriate answer. To the little ones that ask I just say my legs aren’t strong enough to walk & then we talk about how cool it is that I have my chair so I can get around and do fun things! Then you get the “how to you get in bed?”, “in the car?”, etc. stuff. Simple answers usually work fine and then we’re chatting about whatever else might be going on. I’m actually surprised that lots of times they say nothing about the chair. That’s good too – mainstreaming at it’s best! I do try & make eye contact right off and say something first so they know I’m approachable!
Anyway, y’all have a beautiful family. Thanks for sharing your adventures & thoughts – I’ve been reading backwards towards your earlier posts and have even learned a thing or two myself! Take care!
Great example with the Christmas lights Codi !
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Explain very well 🙂