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
OR
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
Showing posts with label queries. Show all posts
Showing posts with label queries. Show all posts
Wednesday, August 26, 2009
Tuesday, July 21, 2009
Queries from Stranger Part I
The other day 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. A couple of 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 of stupid or offensive comments is best described as “who’s at fault.” People want to blame someone. They want an explanation of “what went wrong” perhaps just to reassure themselves that it will not happen to them. I understand that, but it is distancing and makes me feel very isolated. No one wants to be the “don’t let this happen to you” example. Further for a parent and family working on acceptance the word “wrong” is not helpful. In Maggie’s case, nothing went “wrong”. There was no doctor screw-up, no accident. Nature just made her different from other people.
Maggie’s appearance was obviously different from other babies. Her head was very large and her body very small. Her eyes did not stop moving and gazed off to the left, never straight ahead. I did not see any of that. I saw this beautiful little girl who survived 11 weeks in the Neonatal intensive care, including five major surgeries while she was there. I saw a miracle child. There was no denial. I was very much aware of what her health challenges were (though the disabilities unfolded later). She had been through more medical intervention in the first week of her life than most people have in a lifetime. But her appearance was startling. People wanted to know how and why this happened. Who’s at fault?
Of course, the easiest person to blame is the mother who carried the baby. Surely she did something.Did you travel? Did you eat strange things? Did you work too much? Etc etc etc. The most common however, was whether I drank or took drugs. I cannot even estimate how many times people asked me if I drank alcohol when I was pregnant. This was mostly when Maggie was a baby, but I still get it occasionally. In the beginning, it was like a knife going through me every time someone asked that question. They might as well have been saying, “Why did you do this to your child?” Now, I think the question is as stupid as the person asking it.
Generally, when people asked me this I was alone with Maggie. People do not accost you when you are with your husband and two little boys. A woman alone with her “strange” looking child is fair game, however. People learned very quickly that I don’t do the stereotypical “little woman.”
My responses ranged as follows:
1) Steely silence accompanied by icy stare; (most common)
2) “Do you have any idea how insulting that question is”;
3) Are you suggesting this is fetal alcohol syndrome? Do you have any idea what that is?
4) “No, but I drink a lot now”; (my personal favorite)
5) “OH! Was that a bad idea” and if Steve is with me, looking at him incredulously.
6) “Only to excess” with a huge grin.
The response depended on a number of factors. Where were we? A stranger on the street is different from a mom in the schoolyard. Was this a child or a grownup? Was it an older person. (note – it was almost never children or elders.) Was this a clerk in the store transacting business ((#1, 3, 4) Were the boys with me? (Very big factor) (#1, 2, 3) Was I alone? (#1,4-6). Etc. Of course this analysis wasn’t really done – or at least not consciously. Looking back now gives me a different perspective.
I do know this; I never simply answered NO (which, if you are wondering, is the answer).
I will get into other categories as time goes by. There are some winners out there, believe me.
For now, it's almost 7:00AM. I think I’ll have a little nip.
I'm always interested in your feedback. I know that intrusive questions are not limited to the world of disabled parents. We just have a larger market share. What stupid questions do you have to face?
You can either comment or sign the guestbook. I'll get it either way.
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 of stupid or offensive comments is best described as “who’s at fault.” People want to blame someone. They want an explanation of “what went wrong” perhaps just to reassure themselves that it will not happen to them. I understand that, but it is distancing and makes me feel very isolated. No one wants to be the “don’t let this happen to you” example. Further for a parent and family working on acceptance the word “wrong” is not helpful. In Maggie’s case, nothing went “wrong”. There was no doctor screw-up, no accident. Nature just made her different from other people.
Maggie’s appearance was obviously different from other babies. Her head was very large and her body very small. Her eyes did not stop moving and gazed off to the left, never straight ahead. I did not see any of that. I saw this beautiful little girl who survived 11 weeks in the Neonatal intensive care, including five major surgeries while she was there. I saw a miracle child. There was no denial. I was very much aware of what her health challenges were (though the disabilities unfolded later). She had been through more medical intervention in the first week of her life than most people have in a lifetime. But her appearance was startling. People wanted to know how and why this happened. Who’s at fault?
Of course, the easiest person to blame is the mother who carried the baby. Surely she did something.Did you travel? Did you eat strange things? Did you work too much? Etc etc etc. The most common however, was whether I drank or took drugs. I cannot even estimate how many times people asked me if I drank alcohol when I was pregnant. This was mostly when Maggie was a baby, but I still get it occasionally. In the beginning, it was like a knife going through me every time someone asked that question. They might as well have been saying, “Why did you do this to your child?” Now, I think the question is as stupid as the person asking it.
Generally, when people asked me this I was alone with Maggie. People do not accost you when you are with your husband and two little boys. A woman alone with her “strange” looking child is fair game, however. People learned very quickly that I don’t do the stereotypical “little woman.”
My responses ranged as follows:
1) Steely silence accompanied by icy stare; (most common)
2) “Do you have any idea how insulting that question is”;
3) Are you suggesting this is fetal alcohol syndrome? Do you have any idea what that is?
4) “No, but I drink a lot now”; (my personal favorite)
5) “OH! Was that a bad idea” and if Steve is with me, looking at him incredulously.
6) “Only to excess” with a huge grin.
The response depended on a number of factors. Where were we? A stranger on the street is different from a mom in the schoolyard. Was this a child or a grownup? Was it an older person. (note – it was almost never children or elders.) Was this a clerk in the store transacting business ((#1, 3, 4) Were the boys with me? (Very big factor) (#1, 2, 3) Was I alone? (#1,4-6). Etc. Of course this analysis wasn’t really done – or at least not consciously. Looking back now gives me a different perspective.
I do know this; I never simply answered NO (which, if you are wondering, is the answer).
I will get into other categories as time goes by. There are some winners out there, believe me.
For now, it's almost 7:00AM. I think I’ll have a little nip.
I'm always interested in your feedback. I know that intrusive questions are not limited to the world of disabled parents. We just have a larger market share. What stupid questions do you have to face?
You can either comment or sign the guestbook. I'll get it either way.
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