“This is always the hard part. I know people are fundamentally good and kind and nice. However, that isn’t an excuse or a justification.”
Written by guest contributor, Kathleen Cail. You can read her earlier post here.
I recently attended a fabulous conference, hosted by Starfire, which was basically about community development. Part of the discussion was about “bending over backwards to enhance the image” of people who experience disability. We were focusing on “code words.” I worried that when we are too politically correct about words, we end up creating barriers for the very people we want to knock down barriers. We spend so much time talking about “code words” that I worry we make people feel as if they are walking on egg shells and rather than getting to know a person, people avoid that person because they are afraid they might say the wrong thing. Some people in the audience disagreed and said that words do matter because words often reflect what is meant and believed.
Today, I picked up my daughter at school and she was very excited to show me the biographic pamphlet she had completed. Apparently there is an aid or co-teacher in the classroom who helped Grace with this by scribing for her. The 2nd paragraph read, “Grace suffers from Muscular Dystrophy. She has many challenges in her life.”
So much for my soapbox about words earlier that morning. I was on fire. These are not the words of a 13 year old and these are certainly not the words of my 13 year old. I wish I could say that Grace would not likely have mentioned that she has Muscular Dystrophy, but that’s not true. This is a big part of who she is right now. We hope that we can lead her away from this, as time goes on. However, she would never say she suffers from it. I was furious. Whenever I have been asked to introduce myself, I never mention that I am overweight, have a tendency to be controlling, get migraines, got a C in high school chemistry and math is my weakest subject. It’s not that I avoid these things, but it’s not what people want to know about me and it is not what I am going to use as common ground in a potential relationship. Muscular Dystrophy is not going to be the common ground for a potential relationship at Grace’s new school, either. Muscular Dystrophy is going to be something that makes Grace different and last time I checked, what school-aged kid wants to be different, particularly a 13 year old middle school girl?
Words DO matter and there are “code words.” To me these code words sound a little different from the list we constructed at the meeting. To me they include words/phrases like, “we are all about inclusion” or the “Downs kids.” That one always makes me think ofa dystopian world where we have the “fatties,” the “gingers,” the “uglies,” the “short people,” the “Epis” (have to carry EpiPens), the “ADDs”, etc. We just don’t do that. But for some reason, we do feel the need to label people experiencing disability. It is horrifically “politically INCORRECT” to say, “the blacks” so why would we say “the Downs kids?” I’m truly baffled by this.
Words DO matter. Even today I received an email about trying out for the school play. I had asked for some information since Grace is interested in trying out. In fairness to the teacher, Grace has had a very difficult transition to her new school and for the first two days, she flat out refused to go to her classes because she was afraid of the bell ringing (this is considered non-compliant behavior—forget that it really is true anxiety exacerbated by the fact that Grace spent 10 years in a school that had no bells at all). In reading the email, I couldn’t help but wonder if all the parents whose children want to try out for the school play received this email and if it had similar (what I read as code) words,
“…With that being said, expectations about rehearsal time, behavior and keeping up her academics would remain the same if Grace chooses to do the play. I know that everyone is working hard to give her a positive, successful experience…She will need to be at rehearsals and positively contribute when she is there…If the acting part of the play seems like it is going to be too much, there are other ways to get involved besides being on stage!”
We have only been at this school for a few weeks, so I am trying to tread lightly. It is hard to stay calm in the face of this, but it is so important to remain calm in order to “keep my eyes on the prize”—developing a great school community for my daughter, filled with teachers, administrators, friends, and peers who know my daughter, value my daughter, like my daughter and invite my daughter to truly be a part of the community. A community that has opportunities my daughter can seize and enjoy. Part of achieving that goal will take education on my part and theirs. We all have a lot to learn and it is a journey for me, Grace, and for everybody else. I saw a car magnet the other day that read, “People are good.” I think that is true. People are good. We just all sometimes make mistakes or have more to learn. That goes for Grace, me, and the people we meet.
I took a big risk at approaching “Grace suffers from Muscular Dystrophy” as a teaching moment. At the end of “Meet the Teacher” night I approached the social studies teacher and introduced myself. I told her that it was very hard for me to bring up this subject, given that is was “MTT” Night and we were a new family, but that it was very important to me and something I felt couldn’t wait. I told her what came home and how that made me feel and what my concerns were with it. I picked the right person with whom to take the risk. She thanked me for sharing this. She said that she learned a lot about Grace and who we are as a family and what we want for Grace. She also told me she learned a lot about perceptions of people. She wanted me to know that the aid who wrote this is a very nice person and would never have wanted to offend Grace or us and would not have seen what she wrote in this way. This is always the hard part. I know people are fundamentally good and kind and nice. However, that isn’t an excuse or a justification. I know that is a default response. I make that same default response—“I didn’t mean it.”
Truly the teacher was great, but my struggle is always how do I move the conversation beyond the default response. What I want to say but don’t is, “Since she is nice, she will understand then that what was written suggests pity, neediness and less value and that is not an image we want for Grace and that is not what we want people to see or feel when they interact with Grace. We want people to see Grace for who she is. Grace is a typical adolescent who has hopes and dreams. She has crushes on boys and favorite music groups. She likes to dance and sing and hang out with friends. She hates homework. She has been known to throw her medicine down the sink, take off her nighttime braces, when she should be wearing them, and refuses to play on any team that is special needs only. She bugs her brother and her brother bugs her. She thinks her mom pushes her too much to do homework and study and doesn’t like when her mom tells her what to do. She thinks her father is way more fun. She is a democrat and Obama is her hero. If she could watch TV all day, she would. She loves to hug and hold hands. She loves to talk and is very observant. She asks good questions. She’s gorgeous and she’ll tell you she has beautiful blue eyes. She loves the Reds, the Bengals, the Red Sox and the Patriots. She hates the Yankees. Grace has been to many foreign countries and many states in the US. She loves her dog Hank, but not the cat. She loves horses and does horseback riding. She swam on her old school’s swim team and hopes to swim on her new school’s swim team.
Does this sound like someone who is “suffering from Muscular Dystrophy?” Do you feel sympathy for the child described above or do you want her on your team? Do you want to cross her? Make her do something she doesn’t want to do? Or be a Yankees fan or any fan but a Reds, Bengals, etc. fan? Words do matter in helping Grace’s image. I think you know the image I want for Grace, so I think you know the words I would choose. Words DO matter after all.