Where Everbody Knows My Name

Remember the show Cheers? It was a memorable show with an even more memorable theme song: "Sometimes you wanna go where everybody knows your name". Up until 19 months ago, I thought it would be great to go where everybody knows my name. But now that everybody knows me, or more specifically my family everywhere I go, it's not as fun as I thought it would be. Maybe it's because very few of the people who know us by sight actually know our names. Sometimes I think about how nice it would be to go back to anonymity and have an uneventful outing with my kids. I know isn't possible.

For the rest of her life Jane will be the girl (and later the woman) with one hand. Most of the people who recognize her will refer to her only as that. No matter how much I try to change it. But I still try. And so one of my attempts will be to help my family and friends know how to react when they see someone with a disability.

• Don't stare. At first it may be tempting to try to figure out what is going on, but no matter how covertly people try to be about staring, I still see them. 

• Don't open a conversation with a stranger by asking about their disability. You'd be surprised at how many people come up to me and, without introducing themselves or getting an introduction from me, make free to ask about Jane's medical history. In children this is understandable. In adults it is unacceptable. I admit that if I were to see someone with a condition similar to Jane's I would want to talk to them. It's a rare condition and I would love to meet someone else who lives with it. But I would begin the conversation by introducing myself, not by asking about their arm. When your child does ask, don't be embarrassed. It will teach them to be embarrassed. Here are some questions that children have asked me (after reading these I hope you will realize a well asked question is not reason for embarrassment):

1.  What's wrong with her arm? (this one is very common)
2. Where's her hand?
3. Does it hurt?
4. Why does she have a plastic hand?
5. When she grows up will she have a real hand?
6. The reactions from children that aren't questions: staring, flinching, running away in horror (you may spank them for this with my blessing), grabbing her little arm and feeling it (In very small children this is okay. A ten year old should know better). 

• If your children point and stare (which they often do) don't give them a lecture in public. It embarrasses the person with a disability (and their mom) more than if you were to go up, introduce yourself, let the child ask a question and get to know someone who is different from them. Lecturing them and trying to hush them up only teaches them that a disability is a bad thing, or something to be embarrassed of. 
• Never make an assumption about what a person with a disability can't do. I admit the basis for this post was an incident in which we were at the library and one of the librarians overreacted to Jane being near the stairs because she assumed Jane couldn't negotiate the stairs with her disability. She was wrong. I have all but stopped carrying Jane up and down stairs. When in doubt, follow the lead of the person with the disability or (in Jane's case) their parent. You may be pleasantly surprised. So far, I haven't discovered anything that Jane isn't able to do in the realm of normal toddlerhood. That includes climbing EVERYTHING.
• Educate your child in advance about people that are different from them. We have found Nemo to be a wonderful teaching tool. I tell small children that Jane has a lucky arm just like Nemo has a lucky fin. Sesame Street often has guests that look or sound different. When they come on, use the opportunity to discuss the differences and similarities with your children. They will find that the similarities a disabled person shares with them far outweigh the differences.
• Most importantly: Never, never, never assume that a person with a physical disability also has a mental disability. With Jane, as with most people with disabilities, what you see is what you get. She is a perfectly normal toddler with one hand. 

 

Thanks for reading this self indulgent post. I promise next time I'll have another great story about Emily's criminal acts or something embarrassing I have said or done. But in the meantime, I hope this helps someone to see past a disability and to see a person.