posted
Hmph. You'd expect Snopes to do their research before posting something as volatile as a derogatory comment about someone's looks, right?
Nope. Apparently not.
Snopes posted this picture, which they say appears "too gruesome to be real". To my eyes, the man clearly has an uncorrected craniofacial disorder, probably Crouzon's Syndrome.
Now, I may be a bit more sensitive to this than some, since my mom is Nurse-Coordinator of Craniofacial Services for Kaiser Permanente Southern California. But they didn't even think that it might be a medical condition before posting a potentially offensive comment! You can be sure I e-mailed them, but it irritates me that I had to.
Like the time in church that almost a whole side was clear and nobody spoke to some visitors to welcome them in our normally hyper-friendly ward because they had a little girl with Pfeiffer Syndrome. I went up to them to welcome them; they were in town for an adenoid removal in preparation for a midface advancement. The mother was thrilled that I knew what Pfeiffer Syndrome is, sure, but was more thrilled that I talked to her like a normal human being, asked why they were visiting, invited them for dinner, etc. That is something that anyone could have done whether they had ever heard of Pfeiffer Syndrome or not.
And even cleft lips and palates create a wide berth around a parent and child. I've seen it many times, even when the baby is absolutely gorgeous. And you can be sure I make a point to congratulate those parents on their beautiful babies because they are beautiful. I've had parents cry when I told them their baby was gorgeous (and she was! She had big blue eyes and a little pixie face and black ringlet curls. She also happened to have a cleft lip-- just a unilateral cleft lip! And not a bad one at that!) The mother told me that even the doctors and nurses in the hospital hadn't said the baby was beautiful. (I told them that those doctors were obviously blind, and gave them a website of a support group for families whose children have cleft lips and/or palates, which, again, the doctors had not bothered to give them. And this in a city with two world-class craniofacial surgical clinics! )
This kind of thing would not be acceptable if it was a child with Down Syndrome or whose skin color was not that of the majority of the community. So why do people act this way toward kids with (correctable!) craniofacial disorders?
posted
Snopes is quoting the original email they received, which says "too gruesome to be real." That's how their entries work. The part in the box is the legend, as they recorded it, and the commentary appears outside the box. Their entry states that it is quite possibly real.
So yes, I think you are being extra sensitive.
Posts: 720 | Registered: Oct 2004
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posted
Aren't there any surgeries that can change the dismorfia - at least partially? Like people with Down syndrome can shorten their tongues and then can speak normally.
Oh, and thanks for the info, KQ! That was very interesting and thought-provoking post.
Posts: 803 | Registered: Dec 2004
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posted
I've noticed this too. First people tend to stare at kids with unusual faces, then they hurry away. I also tell them how gorgeous their babies are, just as I would anyone else. All babies are gorgeous.
Posts: 1528 | Registered: Nov 2004
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posted
The group of mentally disabled adults I'm working with also recieves the same reaction. The worst is when kids point and laugh loudly, because if my group is retarted, they must also be blind and deaf.
Posts: 803 | Registered: Dec 2004
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posted
I think one part of it is getting used to what you aren't used to seeing. Some people don't shy away from it, they right away are nice, etc, and get used to the different-ness of the face and it isn't really noticeable anymore.
Well, it's noticeable, but isn't. I'm sure that makes sense somehow.
Like...one of my friends has a lazy eye. Smaller example, I know. But he's up front about it and it doesn't bother him when people ask where to look, because you can't tell when he's looking at you. It takes a bit of getting used to, but honesty really helps. But folks have to be willing to approach it and deal directly with those that are different from them somehow.
Posts: 14745 | Registered: Dec 1999
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quote:Aren't there any surgeries that can change the dismorfia - at least partially? Like people with Down syndrome can shorten their tongues and then can speak normally.
Yes, that's what my mom does-- runs the clinics where they treat and as much as possible correct these problems so kids can have as normal a life as possible.
In the case of Crouzon's, it's not that hard compared to some, but it is potentially life-risking cranial surgery (reconstruction of the skull vault and a midface advancement, where the middle part of the face is cut away and then moved forward, often along with some muscle reattatchments to make the eyes function properly. See the page on Crouzon's for more information.) It's best done within the first three or so years of life, although it can be very successful even after that. Almost everyone in the US is either covered by their insurance or the state will pay for this; it's considered essential corrective surgery. Perhaps this guy was born outside the US, perhaps it was against his parents' religious beliefs to have surgery, who knows. Maybe if my mom had been working craniofacial then and they attended her clinic, she could have convinced them; she's kind of known for that.
quote:I think one part of it is getting used to what you aren't used to seeing. Some people don't shy away from it, they right away are nice, etc, and get used to the different-ness of the face and it isn't really noticeable anymore.
I think you probably have it dead-on. When I was in preschool, we were taught fun songs, mostly pop songs from the thirties and forties, and loaded into the bus to go visit a convalescent home down the road. We wore our best church clothes that day, and sang for the patients, almost all of whom were old, many of whom were missing a limb or had had a stroke and had paralysis of one side of their body and face, some of whom had Altzheimer's, in the day room. After singing, they applauded for us, and then we were offered cookies and juice and encouraged to go around and visit them. I, being a big ham, ran around accepting compliments and sitting on laps, listening to stories of their childhoods and their kids when they were little, and having my curls stroked. At a very young age, I just accepted people who weren't what I was used to; most of the class did. We did this for three years, when I was 3, 4, and 5, every two months or so. I really looked forward to it, and so did the residents.
Then my mom began working craniofacial when I was about 12, and I began seeing pictures of and eventually meeting kids with craniofacial disorders.
I guess I just had a chance already to get used to people who look different. Maybe I shouldn't be so judgemental of others. *hangs head* But I think that if more people tried to focus on the child instead of the difference, they'd be able to make a positive remark and not make the parents feel like outcasts.
Posts: 21182 | Registered: Sep 2004
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posted
Got a reply from Snopes. They pointed out what you all did first, and thanked me for the information. I just replied that that had since been pointed out to me, and apologized for my hasty judgement and strong wording.
I really should wait until morning on these things.
Posts: 21182 | Registered: Sep 2004
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quote: I, being a big ham, ran around accepting compliments and sitting on laps, listening to stories of their childhoods and their kids when they were little...
KQ, that gave me a big smile. I hope my kids would know how to react that well, given a similar situation.
Posts: 1862 | Registered: Mar 2000
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posted
*thinks about quotation* *takes a minute* *Latin is a long time back* Oh! I get it.
ssywak, we reacted like that because we were expected to. I think we may have been told once, "The people there are older, like your grandparents or great-grandparents. They are there because they've been sick. They may look different because they have been sick. But you should treat them like you would your grandparents." After that first time, we were just caught up in singing, cookies, and attention. They knew we had it in us to behave appropriately, and didn't worry much, so we did.
When Emma gets a little older and is walking better and talking more understandably (sometimes I'm the only one who knows what she's saying right now), I am definitely going to find a local convalescent home wherever we are and take her to be a volunteer "grandchild". That is one of my fondest childhood memories. Many retirement and convalescent homes have a program for it and you could probably find one in your community, too. Posts: 21182 | Registered: Sep 2004
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posted
typically I would feel bad about someone's picture going around the internet and being made fun of. But in this case, I don't fee bad for him at all. There are enough people in this world that deserve sympathy, sex offenders are not in that group.
Posts: 1901 | Registered: May 2004
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posted
The point is not what this guy has done, the point is that you shouldn't criticize him on his look, because maybe people with the same disease will see the comment and feel bad.
Posts: 3526 | Registered: Oct 2001
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posted
"Many retirement and convalescent homes have a program for it and you could probably find one in your community, too."
I have been wanting to do this with my kids. My daughter and son love to hang out with my grandmothers, and it just means the world to an older person, or to a young person in a long term care type place, to get visitors.
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