I’ve written a few entries about stupid things people say to me regarding Maggie and her disabilities. (check the label/tag “stupidity” to see the previous three posts about this.) This is probably the last one of these for a while. As noted, sometimes I have snappy comebacks and sometimes I don’t. That depends on several factors, including my mood, my relationship with the person speaking, how insulting they are etc.
The comments happen frequently but not constantly. They are tiresome, unless they come from children. I always answers questions or even invite comments from kids because the only way kids learn is by asking. The same is true of adults, of course, but adults get points off for boorish behavior. Often the answer should be, “it’s none of your business. “ but the last thing Maggie needs in this world is a mother who alienates people. She is isolated enough.
There were a couple of instances that demanded a stronger reaction.
Maggie was a funny looking baby, I admit that. Her head was huge, she wore these (cute) pink plastic glasses and was always sort of draped over my arms. People often stared and then caught themselves and stopped right away. Sometimes they didn’t stop and it made everyone uncomfortable.
In one instance a woman’s incessant staring was frightening the boys, who were about 5 and 7 years old at the time. We were in Toys R Us. I tried to ignore her and told the boys to do the same but she was cranking her head and staring at Maggie mouth agape. Her husband was trying to get her to stop as he could see that the boys were worried. I will never know what her story was and to this day I wonder if she lost a child or something.
But you know what? No matter what your story, you cannot scare my kids. I finally walked up to her and said. “We are done in this aisle, but if you want to continue to stare we will be over in action figures.”
Needless to say that stopped her cold. The boys were relieved and learned that sometimes you have to school people a little bit. They still stare back at people and make them realize what they are doing. That day they managed to parlay the whole scene into (another) Ninja Turtle or whatever the action figure du jour was.
The other was, without a doubt, the most insulting thing anyone ever said to me. But it was so ludicrous that it was almost funny. We were in the dog park and I noticed my benchmate, an older Russian woman, staring at Maggie. I ignored her and simply enjoyed being out in the air watching the dog frolic. After several minutes the woman, who spoke with a very strong Russian accent said “Vats wrong wid her?” I gave my stock answer,” nothing’s ‘wrong.’ This is how she was born.” I studiously ignored her continued stares, but I knew something else was coming. She tapped my leg and waited until I looked at her. She then pointed a bony finger in my face and said”
“No more bebies, pleeece”
Looking back now I get that she was trying to give me a lesson in genetics, but didn’t have the command of the language. That would still be terribly offensive, but the way it came out was incredible. A complete stranger in the dog park was wagging her finger in my face and telling me not to breed again. I was dumbstruck for a moment, which is a rare occurrence for me. The absurdity of the whole thing hit me and the only thing to do was respond in an equally absurd way. I just looked at her and said. “You know I was going to but since you don’t think I should, I will tell my husband -- no more kids.”
My sarcasm was completely lost on this woman. She just looked back at the dogs and said “Ya, dat iz goot”
Now it was my turn to stare.
Showing posts with label stupidity. Show all posts
Showing posts with label stupidity. Show all posts
Tuesday, October 6, 2009
Monday, September 14, 2009
Queries from Strangers Part III
This is an ongoing series about the stupid things people say to or about Maggie and our life. I’ve written other installments. Just click on the "stupidity" tag in the list of categories to the right and you will see those posts.
This makes it sound like I’m fending off these comments every day, and I’m really not. I still get more than my share of stupid comments, but either it has slowed down or I’ve grown immune because I don’t hear this stuff so much anymore. Nonetheless, well meaning people should understand that a lot of their comments are not welcome at all.
Some of you wanted to know how I respond to dumb remarks , and I have snappy comments for many. The subjects in this post, however, are met mostly with a stony silence. To quote an excellent phrase my brother used recently, a whisper can be louder than a shout. These categories are: 1). She is not a pet and 2) religious observations should be offered silently. (And just to be clear, I have a dog that I adore and I have a religion that works for me.)
I cannot count the number of times Maggie has been compared to someone’s cat or dog. I cannot think of a single time this wasn’t completely offensive. I realize you love your pet and that's great. Nonetheless, emergency trips to the neurosurgeon or calling 911 because Maggie isn’t breathing do not compare to taking the cat to the vet. Maggie’s often frantic emotional responses should not be likened to your dog’s fear of sirens or thunder. No disrespect to your cat, dog, horse, pig, fish or any other pet, but PUHLEASE.
The worst of it is when these comparisons are made by medical professionals. One example (of hundreds): When Maggie was little she could not tolerate riding in the car. We could go about a mile and then she would start screaming. S C R E A M I N G. And that made her turn blue. It was unnerving and did not make for safe driving. Her wheelchair needed some repairs and rather than come to San Francisco, as was the custom, the woman wanted me to drive to Stanford, about 45 minutes south of here. I simply said, “I’d rather wait for you to come to SF, I just cannot come down there. It would be unsafe because Maggie can’t tolerate it. She said, sympathetically, “my cat is the same way. I just can’t do anything because of it.’ My silence was pronounced. There was a pause and then she said, uhhhh, I guess that’s not the same thing, is it.
No. It’s not. Comparisons to healthy children are hard – appropriate, but hard. Comparisons to animals are not ok.
The Religious comments come fast and furiously. We used to go to church with Maggie all the time, but we take her only rarely now. Religious comments when we are at church are acceptable, even if they make me a bit uncomfortable. We are there; the subject is apropos. However, strangers stopping me in the park to tell me that God chose me, or Maggie, or people telling me that Maggie is an old soul and gets to enjoy this life with people caring for her, or people asking me if I thought I was interfering with God’s work by having all these surgeries (honest to God!) are not. And I REALLY resent being told that I must have done something bad because I’m being punished. Here’s news: I am not the devil and I am certainly not a saint. Neither is Maggie.
I will make a sweeping generalization here. People who are willing to share their religious views in public assume everyone agrees with them. They do not think these are "opinions" or "views," they are trying to share what they believe is the TRUTH. It may be your truth, but it may NOT be mine.
To those of you sharing applying their religious views or rules to my family, know this: Even in the event I agree with you, I will still not discuss this. The fact that my daughter has a feeding tube does not automatically dictate where I stand on end of life issues, for example, and thank you but NO! I will not discuss and will certainly not debate this with you. No one should not mistake my silence as acquiescence or agreement. My religion is private and personal to me. I wish yours was to you.
Smile at her, say hello to her. Pray for her, pray for me, send positive vibes, do whatever positive thing your religion or philosophy does. We thank you for that. But don’t come up to me in the grocery store, or in the park, and interpret my daughter’s situation from the standpoint of your religion. It makes everyone uncomfortable.
This makes it sound like I’m fending off these comments every day, and I’m really not. I still get more than my share of stupid comments, but either it has slowed down or I’ve grown immune because I don’t hear this stuff so much anymore. Nonetheless, well meaning people should understand that a lot of their comments are not welcome at all.
Some of you wanted to know how I respond to dumb remarks , and I have snappy comments for many. The subjects in this post, however, are met mostly with a stony silence. To quote an excellent phrase my brother used recently, a whisper can be louder than a shout. These categories are: 1). She is not a pet and 2) religious observations should be offered silently. (And just to be clear, I have a dog that I adore and I have a religion that works for me.)
I cannot count the number of times Maggie has been compared to someone’s cat or dog. I cannot think of a single time this wasn’t completely offensive. I realize you love your pet and that's great. Nonetheless, emergency trips to the neurosurgeon or calling 911 because Maggie isn’t breathing do not compare to taking the cat to the vet. Maggie’s often frantic emotional responses should not be likened to your dog’s fear of sirens or thunder. No disrespect to your cat, dog, horse, pig, fish or any other pet, but PUHLEASE.
The worst of it is when these comparisons are made by medical professionals. One example (of hundreds): When Maggie was little she could not tolerate riding in the car. We could go about a mile and then she would start screaming. S C R E A M I N G. And that made her turn blue. It was unnerving and did not make for safe driving. Her wheelchair needed some repairs and rather than come to San Francisco, as was the custom, the woman wanted me to drive to Stanford, about 45 minutes south of here. I simply said, “I’d rather wait for you to come to SF, I just cannot come down there. It would be unsafe because Maggie can’t tolerate it. She said, sympathetically, “my cat is the same way. I just can’t do anything because of it.’ My silence was pronounced. There was a pause and then she said, uhhhh, I guess that’s not the same thing, is it.
No. It’s not. Comparisons to healthy children are hard – appropriate, but hard. Comparisons to animals are not ok.
The Religious comments come fast and furiously. We used to go to church with Maggie all the time, but we take her only rarely now. Religious comments when we are at church are acceptable, even if they make me a bit uncomfortable. We are there; the subject is apropos. However, strangers stopping me in the park to tell me that God chose me, or Maggie, or people telling me that Maggie is an old soul and gets to enjoy this life with people caring for her, or people asking me if I thought I was interfering with God’s work by having all these surgeries (honest to God!) are not. And I REALLY resent being told that I must have done something bad because I’m being punished. Here’s news: I am not the devil and I am certainly not a saint. Neither is Maggie.
I will make a sweeping generalization here. People who are willing to share their religious views in public assume everyone agrees with them. They do not think these are "opinions" or "views," they are trying to share what they believe is the TRUTH. It may be your truth, but it may NOT be mine.
To those of you sharing applying their religious views or rules to my family, know this: Even in the event I agree with you, I will still not discuss this. The fact that my daughter has a feeding tube does not automatically dictate where I stand on end of life issues, for example, and thank you but NO! I will not discuss and will certainly not debate this with you. No one should not mistake my silence as acquiescence or agreement. My religion is private and personal to me. I wish yours was to you.
Smile at her, say hello to her. Pray for her, pray for me, send positive vibes, do whatever positive thing your religion or philosophy does. We thank you for that. But don’t come up to me in the grocery store, or in the park, and interpret my daughter’s situation from the standpoint of your religion. It makes everyone uncomfortable.
Go tell your cat or dog or fish or pig.
Wednesday, August 26, 2009
Queries from Stranger Part II
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
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
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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