So the other day I was catching up on reading Dave Hingsburger. I know, I know- I’ve said before just how much I like the guy and how much I appreciate his advocacy; just how much I have learned and continue to learn from him. I’m repeatedly amazed at how simple and profound his thoughts make the world appear when I find myself agonizingly inarticulate over similar issues.
Here’s the thing- The examples he gave in this post- I was fortunate. I won’t say I never did the things he did as a caregiver- I’m sure I did. But I also had the blessing of his wisdom back then. I had so many teachers reminding me to listen to and respect the words, thoughts and actions of a person with a disability. It was my job as a caregiver to hear them and to help them navigate their world in their own way. There is one thought that sticks with me, and I apologize that I can’t remember who to give the credit too- but there was a time when I worked with people with fairly profound disabilities on a daily basis. We worked to teach them daily living skills. How to unload the dishwasher, dress themselves, shop for themselves, feed themselves. I remember someone wise interjecting during a weekend caregiving stint, that just because someone can do something, doesn’t mean you have to make a lesson of it every single time. Sometimes, it’s nice to have someone get you your cup of coffee. It doesn’t mean you weren’t capable and need to prove that you are learning every single time.
Where am I going with this? Especially since it seems to be the opposite of Dave’s point? That the point is to learn to listen to people. To every person. To put aside the soundtrack in your head of what you think someone should or could do and notice them today.
All people- and here’s the light that just flipped on as I was reading Dave; including the people that aren’t labeled as “disabled”. I’m outing myself here. Sometimes, I’m hyper-critical of Zuzu. Not here, but in the moment, when she’s having a hard time and not behaving like how I think she should behave in a given situation. I rationalize, well she’s new to this earth. She needs me to instruct her. She needs me to tell her we are going to storytime now, because that’s when it is scheduled and you’ll just have to be able to sit still and listen to the nice lady like all the other kids because that’s where good parents take their kids. Even though I see the energy practically bursting out of her. I see that she wants to run and play and not have to answer to anyone at this moment.
I’m still reflecting on this. I’m not suggesting parents don’t owe it to their children to instruct them. I know we do, but we also owe it to our children to let them be who they are. The difference is when the Quail hollers and screams at me and knocks her carefully prepared food off of her plate- I tell her no, but later I will reflect on her strength, her ability to have an opinion and her ability to communicate it so clearly. I make my focus to try to offer a choice next time so she can choose what she wants. I work on the sign for eat and for drink- so next time she wants one or the other she has an easier way to get her point across. Because she has a disability- I expect to have to slow down and learn to work with her, because of how I’ve been trained. Because of this training I know she’ll get there. I tend to not make overarching generalizations about what it means about her capacity and what kind of person she’ll be or what kind of trouble she’ll have or whether or not she’ll grow up to be a doctor some day or not. I know to wait and listen to her and let her find her voice.
I don’t always give Zuzu that same wide girth. If she does the very same action, more often than not, my response is to despair something along the lines of, “Oh no! Not again, you know better than to do that!” And then put her in time out and then later scan my ever-growing library of discipline books for the latest technique to “manage her behavior”.
And don’t get me wrong- I’m not talking about the age dependant biggies here- The Quail- she bites me- she goes to time out. She hits, she gets told no hitting, be gentle and shown how to use her little hand. The next meal we try to be a little more prompt about introducing the choices before she’s so far gone she’d eat her own arm to get a bite of dinner.
But Zuzu, sometimes I forget she is just a little kid. She’s so grown up in so many ways and is the first to tell me what she knows and correct what I think I know. Sometimes I think she should already know more than she does.
Dave says, “Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?”
It’s not too much to ask Dave. Sometimes we all need reminders. Sometimes we are better about remembering the lesson with some and not others. The listening I think comes easier to me with the Quail than it does with anyone else in my life. Probably because I’ve had so much practice and lessons on listening to those with disabilities. I guess in some ways I do still group her as having a disability by affording her actions more respect than I do other people’s. I guess what I realize now- is that it’s really time for that lesson to sink in and generalize a bit. If I’m really going to treat people with disabilities with the respect I afford others- then I need to remember to treat others with the respect I afford those with disabilities. I need to really get the
message that we are all more like than different.
Thank goodness children are pretty darn forgiving.