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April 04, 2006 | Read comments | Post a comment

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.

The distinction is subtle, but there's a shift here from previous stories of this type. Stories like this seem to get trotted out periodically; typically their flavor has a heavy dose of how awful the lives of the "normal" kids are; what a burden it is to have a disabled sib -- they get all the attention; you're supposed to be grown up and not have any problems yourself, yada yada yada. Not to denigrate any of this -- because it surely is true that nondisabled sibs do have problems like these. But there always seems to be something about the tone of such pieces -- a not quite stated but implicit "blaming the victim" tone.

I was prepared for the worst when I started reading it -- reporter Gretchen Cook had to use the word "challenges" (which always makes me go "grrrr!") and she did trot out the usual litany --

Some children say they fear "catching" their siblings' disabilities. Others may wish that they, too, were disabled, so that they could get all the attention their siblings do. And many suffer embarrassment about their siblings' inappropriate behavior or abnormal appearance, and then feel guilty about it.

But then the story seems to take a kind of turn, and Cook gets at some of the reasons behind the problem, which I don't often see in stories like this. And then there's this:

Mr. Meyer [Don Meyer of The Arc's sibling support project] said that when asked about the most embarrassing moment of their lives, few of the children cited anything having to do with their disabled siblings. Instead, most recounted the usual teenage humiliations: problems in romantic relationships or dealing with parents.

And that, Mr. Meyer says, underscores an important point: "When I talk to parents about embarrassment (about disabled siblings), I ask them to keep in mind that it's an age-related condition," he said. "That's the good news, that a lot of that seems to be resolved by even their late teens."

Well, anyway... read it and let me know what you think. Are things changing?

Posted by mjohnson on April 4, 2006 03:30 PM


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?

Posted by: Kara Sheridan on April 5, 2006 01:41 PM

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".

Posted by: Kassiane on April 6, 2006 02:11 AM

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).

Posted by: Mary Johnson on April 6, 2006 08:37 AM

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.

Posted by: Kara Sheridan on April 6, 2006 09:29 AM

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!

Posted by: Mary Johnson on April 13, 2006 10:48 AM

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..

Posted by: Kassiane on April 13, 2006 06:43 PM

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