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Suffering Sibs

In today's New York Times we have this story: Siblings of Disabled Have Their Own Troubles.

This turns out to be a better article than I'd anticipated.


I, too, found this article surprisingly well written and with an overall positive tone. As expected, I had a few cringing and questioning moments...I wonder why the description of Ally sharing that her sister was "really fun to play with" and didn't embarass her "all that often" was labeled as "backpedaling"....Especially considering it seems that these children were directly asked whether or not their siblings embarassed them and if so, how often. Why cannot we accept the truth in this little girl's statement?? If we are expected to empathize with the other views from children her age and view these as honest perceptions, then why is her statement labeld "backpedaling" simply because she didn't fall in line that sometimes her sibling was embarassing and she affirmed that her sister was fun to play with......Maybe I needed to have heard the tone of the interview, but from the words-I don't get it (but am not surprised-our society has a difficult time believing children other than when their messages coincide with something we want to say anyways....)

I've always found this topic so interesting because my closest lifelong relationship is with my brother. I can remember from a young age attending conferences for people with my disability and hearing my brother return from the siblings meetings with a complete sense of confusion-It really seemed to bother him that so many didn't have the relationship we did. Since my condition involves alot of caretaking from broken bones early in childhood and the episodes are sometimes traumatic and usually unexpected-the nature of the particular disability causes families to get used to cancelling events and dealing with the disappointment of another fracture/surgery/etc. There seems to be a good deal of jealousy between these siblings (even now into our young adulthood)...and just general withdrawl. Many of my friends with the same condition report that their siblings routinely left them behind during adolescence and they grew even farther apart. I am so thankful that I have had my brother my entire life and I think he sincerely values not only have me for a sister but in addition me with a disability....he really has valued the disability culture increasingly as I have-he has been involved and as stated in the article shown pride in his knowledge on my disability from a young age. Now, I watch as he incorporates inclusion into his career as an educator. So..to answer your questions whether things are changing-I'm not sure! I would like to hope so and this article shows a glimmer of hope. I would be even more interested to read about the issues that I think are less thought about-people assume that my brother received less attention, was jealous of me, and was generally neglected during childhood....I would be more interested in an exploration of any anxieties that siblings of children with disabilities might experience-or with conditions like mine which involve careful treatment through childhood..what are the effects of guilt/feeling like the sibling caused an episode? I'm also interested in seeing the long-term outcomes. I think few realize that many parents attempt to bridge the gap and may overcompensate on the sibling's side-being permissive or giving what to "make up for their experiences"........Ad last...Many siblings I know adopt minor caregiving-but more accurately described as protective roles at a young age...I see that this pattern can have certain effects based on the constant need to protect in other relationships (marriage, father, mother, etc.)....So-it's something I've thought alot about-would like to see more on it. Any other thoughts?

It bothered me.

They talked a lot about autism (I'm autistic) and how embarrassing people like me are and all that. And I'm sick of it, because...well...

They aren't easy to live with either. Just no one asks US.

*shrug* less bad doesn't necessarily make "good".

Kassiane (above) makes excellent points. It's a sad state of affairs when I say an article is "better" and the reporter STILL hasn't bothered to interview the disabled folks -- only the "normal ones -- as though their views are the only ones worth having. I hope Kassiane will make these same points in a letter to the New York Times (letters@nytimes.com).

I agree this is a persistent hole in the public's understanding of us (the lack of even asking) but don't we have to consider the title of the article "Siblings of Disabled Have Their Own Troubles"? If I'm reading an article about one vastly undiscussed group,say stay-at-home-fathers, I don't expect another population to be interviewed.....I just didn't think that was the focus of the article.

Kassiane didn't just comment here; she sent a letter to the NYTimes. Yay! It was published on Tuesday in Science Times. Here's a partial quote:

I have news for you: all y'all aren't that easy to live with, either. Neurotypicals are loud, impulsive, manipulative, too easily embarrassed and unpredictable. They have friends who are loud, impulsive, manipulative, too easily embarrassed, mean to us and unpredictable. Many an autistic child has been bullied by a group that includes his or her own brother or sister (who often claims not to be related). But no one ever asks us. Maybe it's time to start, instead of assuming we don't have thoughts and feelings. . . ( Read entire letter - requires free registration at NYTimes.)

You go, girl!

Well that's a big surprise. Really. I about fell over. Wow. Thanks.

There was another letter printed that pushed for acceptance of disabilities. Woo..

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