I have thought about writing this post for a long time but couldn't quite figure out how to do it. While visiting my brother and his wife we met Mahli, We were so excited because Mauli had a walker just like Annie. We had assumed that Mahli had CP because it was the only diagnosis I had ever seen use a walker but I was wrong- Mahli needs her walker for a clubbed foot. This misunderstanding prompted my sister-in-law to ask how we prefer to be asked about our child’s disability and both Mahli’s mom and I just stood and thought for a second. Curiosity is normal. When you see a child in a wheelchair or with a walker or with braces on their legs it is natural to wonder. There are times when investigating your curiosity is totally fine but don't forget, curiosity killed the cat.
We are very pro education, I love telling Annie’s story and educating whoever will listen about cerebral palsy, epilepsy and Incontinentia Pigmenti. I hope to one day live in a world where no one stares at Annie in a store and we don’t stop a room when I roll a two year old in in her wheelchair. People with disabilities are just that, people. They want to be treated like everyone else and be accepted. I think education is a vital part of normalization so I don’t mind being approached and asked about Annie’s condition. But I have to be honest, I have my bad days. There have been days that I am ready to snap at the first person who questions me parking in a handicapped spot (because there’s no way a 27 year old woman could have a disability right? But I digress..) I have made the decision to be an advocate for childhood disabilities but Annie did not and if she decides she doesn’t want to as she gets older I will respect that. Kids want to blend in, they don't want to be the center of attention and to be called out for being different. I am sure that she doesn’t want to feel like a sideshow every time she leaves the house, she doesn’t want to be stopped by a handful of people asking about her at every store we go to. It is ok to approach us but be respectful. Read the situation- if I am frazzled with my five year old running around, pushing annie with one hand and holding a basket with the other hand it's probably not a good time to satisfy your curiosity. If I look like I haven't slept in two days and I’m wearing sweatpants, a messy bun and a tee with baby food on it, it's probably not a good time to ask.
Dealing with children’s curiosity is different than talking to an adult, kid’s questions are pure curiousity where adults border on being nosey sometimes. The worst thing I have experienced is being approached by a curious kid just to have their parents shoot them down and tell them in a hushed voice to not approach us. Let them! They approach us and ask questions with such an innocence, childhood is the time to investigate your curiosities and learn. When you pull them back and sternly explain to them that they can't ask about Annie’s wheelchair while apologizing to me you are teaching your childhood that disabilities are something that should not be talked about. They are learning that the subject is taboo and they should ignore it. We want your child to not stare at us in a room because they don’t have a reason too- because they see annie just like they see every other kid- not because they were taught to not approach. You are teaching them not to approach my daughter on the playground, at school, in line at the store. Annie is a very social child and it breaks my heart every time that she tries to get the attention of another kid just to be stared at and then ignored. Teach your child that it is ok to approach us, teach them that everyone is different- some kids have dark skin, some kids speak a different language, and some kids need a little help walking or talking- so that I don't have to explain to my kid why other kids won't play or talk to her. Teach your kids that our kids are normal.
I am no expert, I have had a disabled daughter for two years now and I am still trying to figure life out. Asking about a child’s disability really depends on their parents and situation, so it is hard to say when it is ok and when it’s not. I will tell you this: don't approach someone for the sole purpose of learning about their diagnosis- treat them like you would any other kid. Ask them how old they are or what grade they're in, if they like school, that their shoes are adorable, tell her that you love her wheelchair and the pink matches her perfectly. While it is hard to tell you what to do, it is easy to tell you what not to do. NEVER ask a child’s parent “what is wrong with them?”- you might get punched. There's nothing wrong with our children, they have challenges and are different than other children but they’re never wrong.