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mock my pants not my sister

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beethoven

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http://childrenshospitalblog.org/mock-my-pants-not-my-sister/

Mock my pants, not my sister
by Childrens Hospital Boston staff on July 18, 2011

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.



On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.

For more information on Dr. Skotko and Children’s Down Syndrome program please visit their Facebook page.
 

beethoven

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my kid had an mri a few months ago. im thinking no news is good news. months have gone by, but i figure i might as well call there and ask if it turned out ok. they call right back and book an appt for next wk. i cant make it, so they give me october. fine with me. they call back and tell me no, the doc wants to see me asap. i hope its just news and nothing weird, ya know? cant sleep the last few days. anyhow, the whole thing has me jumpy and sensitive. carry on folks. and and plus plus, please play nice.
 

MsSage

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Sending prayers
I do have one question....did they tell you why they didnt call before you called if its ASAP?
 

Steve

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beethoven said:
my kid had an mri a few months ago. im thinking no news is good news. months have gone by, but i figure i might as well call there and ask if it turned out ok. they call right back and book an appt for next wk. i cant make it, so they give me october. fine with me. they call back and tell me no, the doc wants to see me asap. i hope its just news and nothing weird, ya know? cant sleep the last few days. anyhow, the whole thing has me jumpy and sensitive. carry on folks. and and plus plus, please play nice.

hopefully all will be well,.. and our prayers are with you and your child,

and while it is easy to give advice... since your already stressed.. maybe the appointment next week would be a a better choice..

I know you said it can't be made,.. but short of a wedding or funeral we can be replaced at almost any task...


take care.. and May GOD bless your family..
 

beethoven

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thanks guys. the kid's seizures from between a yr ago and 6 mnths ago triggered this mri. last mri yrs ago showed malformations, but no lesions. kid is seizure-free on meds the last 6 mnths. point taken about the appt.
 

beethoven

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mssage that is alittle bit of a loaded question. that you take an interest is noted. having been an advocate for many years now and knowing so many, many loving families of children in similar circumstances, we do influence one another afterall, the experiences of this situation shapes one into a very careful manager of all things to do with this subject. we grow very big hearts surrounding the human condition and vulnerability, and are certainly motivated to do what needs doing, but perhaps you will forgive me not trying to explain it too much. perhaps how we are moved to do the things we do or dont, and how it affects our priorities is an area of vulnerability one is not easily willing to share. will say am not measurably curious or interested to know if this was an oversight, or perhaps something else. i prefer to focus on just going forward. that is all.
 

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