This is part two in a (probably) three part series. I am going to start this one the same way. When I wrote about the need for many parents of special needs kids to act as ambassadors to the non-disabled world, I commented on how difficult that can be when people say stupid things. People wanted to know some of the stupid things said and my reactions. I can relay a few of those, but it is difficult to recreate the emotion of the moment, or the context of some of the comments.
Initially I wrote a long piece listing various examples, but trying to capture 15 years of idiocy in one entry is too whiny, which is not how I feel. Besides, focusing on the stupid or offensive things subordinates the kind things people do or say. The kind things astound me. Nonetheless, inquiring minds want to know, and I want to tell. Therefore, I will just put the idiocy and into general categories and serve them up slowly along with the responses.
The first category was “Who’s at fault?” You can read that here Maggie World: Queries from Stranger Part I http://sfmaggie.blogspot.com/2009/07/queries-from-stranger-part-i.html#links
The second category is one I will label “Why was she born” A question I got all the time when Maggie was little (but not so much anymore) was, “Did you know she would be like this before she was born?” Or “Didn’t you have an amnio?”It is difficult to convey the tone of voice here. Think of it as high pitched and incredulous
There were times and contexts that neither question was offensive. I frequently speak in front of groups and open myself up to questions and I would expect questions about medical history then. If I am talking to another parent who is trying to figure out issues with their own child, or having an intimate conversation with a friend, those types of questions are perfectly appropriate.
Other times it is incredibly offensive. Strangers in the park, at the museum, in the grocery store or even at the doctor’s office simply do not get to make these inquiries and neither do casual acquaintances. First of all, it is very intrusive. I do not ask people questions about their medical information or that of their children and expect others to offer the same courtesy. Many of Maggie’s medical conditions and most of her disabilities are obvious, and people seem to think that changes the rules. It does not.
Secondly, the implication often is that I would CERTAINLY be better off, and so would Maggie, if Maggie were never born. Sorry. That does not work for me and I am willing to say not for Maggie either. Think what you want about pro-choice or pro-life. Those do not apply once the child arrives. In addition, societal questions about costs of care etc cannot be addressed on an individual or anecdotal basis. They have to be addressed at a policy level. I am her mother. Guess where I am going to fall on those types of questions. I should not have to defend my child’s existence in the world.
My responses when the context made it offensive were generally one of the following:
1) Ignore the question completely and just stare quizzically until they get uncomfortable. This is very effective.
2) Tell them it is none of their business. I did this, but not very often, because then I have to defend myself from the offense they take “Hey I was just interested, obviously you’re sensitive about this...etc
3) Smile brightly and say, “We had every single test!” (Which is true, by the way and all indicated she was perfectly healthy.) “And we were thrilled to learn we were having a girl after two boys!” That is the best one. It presumes the question to be innocent (even when the context dictates otherwise). It lets the person know how happy I am to have a daughter without addressing the value judgment implied in their question. Honestly, it was often difficult to muster the (pretend) enthusiasm when someone has offended you. It is worth it, though, to see the confused look on the faces. Moreover, it makes them ill at ease. If they want to proceed, they really have to pry, which many do not want or mean to do. If they persist, I can use #2 without worrying about hurting their feelings.
Now that Maggie is 15, I do not really get questions like these anymore, which is ironic because now I could handle them better than I could when she was little.
Still to come…religious questions, animal comparisons and random advice. Hmmm. This may be more than three parts. Stay tuned