No one likes to be pigeonholed. It feels demeaning and dehumanizing. If we are categorized we lose our individuality. If the categorization happens to be right, it feels creepy. If it’s wrong it’s downright offensive. Reaching subjective conclusions based on objective criteria omits real life and personal circumstances. It’s profiling and doing it to people strips them of the parts of them that are unique. It omits humanity.
We all do it in a general way. Advertisers target an entire demographic because percentage wise there is sufficient accuracy in these categories. Applying general conclusions to general groups of people is fine. Applying general conclusions to a specific person is not.It just does not work for everyone. You are a white, middle aged, professional female; hence you love Volvos and sushi. What? No I don’t? (OK, I do like Volvos, but it’s very difficult to get a wheelchair in one.) You are teenage African American male, hence you are into hip hop and sagging pants (are those still in?). The dapper African American high school student who plays classical piano might take exception to that.
The more unusual the objective criteria, the more likely you are to be wrong. It is one thing to be wrong about the type of car I might like and quite another to express conclusions about someone’s life. It happens to Maggie all the time. People see her disabilities and assume she has a miserable life. They impose their own value judgments on her and decide what her life is like. Perhaps, they think if that were me I would be miserable, hence she must be miserable. Newsflash – she’s not. If you’ve ever read anything in this blog or ever spent more than 30 seconds with Maggie you know that.
Doctors – who dedicate their lives to curing others - cannot cure her disabilities. They can cure her illnesses but not her disabilities. Perhaps because they can’t “fix” her, some (not all) assume her life is terrible. Some refer to her poor quality of life. They are wrong, but they are powerful and in a position to apply those judgments in dangerous ways. I quickly remind them that her life is different, and we think the quality is quite good. I ask them to give me the medical information and let us decide the quality of life issues. That tends to stop them cold. They may think I’m crazy. I really don’t care. My job is to protect her, even from those who will help her.
Don’t misunderstand or think me naive. I completely understand that Maggie got a raw deal in life. I know that better than anyone. But Maggie is almost constantly happy. Things you wouldn’t even notice absolutely delight her. She is smiling or laughing more often than not, because she finds her life just delightful. That to me demonstrates a pretty good quality of life.
I pity the fool who tries pigeonhole Maggie. If they can get past their own bias, she will surprise them every time.
And her crazy mother will throw sushi at them from her Volvo.
I wrote a piece about this a while back when a doctor told a group of medical students that Sophie was a "disaster." You could possibly hear the part of my brain that "liked" this doctor clang shut like a prison door.
ReplyDeleteI have always looked on Maggie's face as filled with joy. Radiant, really -- your words about her speak to that but one can see it, too, plain as day.