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I remember a terrible injustice during high school that I still look at and wish I did more.  There was this desi girl that I always saw in the hallways hanging out with the “jock-ish” people, but I always sensed that those groups never wanted her there.  They did not feel comfortable with her presence, but because they felt “sorry for her” they would stay while finding ways to subtly poke fun.  I will not mention her name, but something in me always sensed there was something more to her than this situation.  She (I will use the name Annie for her protection) genuinely had “something wrong in her brain” (as I used to describe it to myself back then) but even though I could not understand it I knew it just was not right for her to be be poked fun at when there really was a problem.  I even remember a teacher of mine (whom I will also not name) who made a joke about her, and it just made me feel uncomfortable because deep  down I knew something more was wrong than her just “being weird”.

I learned through people who knew her at her religious place of worship that her parents knew something was wrong, but didn’t want to do anything about it.  In fact they were embarrassed and would mostly leave her on her own while at religious events.  I found her parents’ reaction and neglect to be much worse than the way people mocked her and treated her at school.   It always bothered me and I wonder what happened to Annie after I graduated.  I really wish I was more aware in high school about her issues in order to tell the people who treated her so rudely to stop it.  More importantly, I wish her parents were truly aware of it and understanding.

I now present a case that I saw much later, after high school and college.   was subbing for an aide in a special ed class, which dealt mainly with students of more severe developmental disabilities.  There was a girl named Sarah who I recognized as being South Asian.  She was not able to respond in clear words, but when I began to speak in Urdu to her she held my hand and responded positively.  One of the main teachers was surprised by this and asked my ethnic origin, and told me Sarah’s family was the same.

She then asked, “I hope not to sound offensive or overgeneralize, but is it in your culture to just not care about children with these disabilities?”

I really did not know how to answer her, except to say that  many people in the South Asian community did treat their children this way, but that it will eventually change.  I asked her what she meant in Sarah’s case when she asked me that question.  She revealed to me that Sarah’s family called her a “black omen”, but much worse, treated her like one.  It was so bad that her mother would pick up her sisters in a separate car, while she sent Sarah home on a school bus just so her sisters did not have to be seen with her.  Even within school, the sisters refused to associate themselves with Sarah, period.

She also told me that the school offered some extra skills development outside of school for Sarah in the comfort of their home.  Of course, the parents refused such help.  They just didn’t see the point.  To them, her development wasn’t worth the investment because she was never going to be “normal”, so who cares what kind of benefit she gets from extra help.  It is sad that these parents came from Pakistan only 6 years ago where these resources weren’t available to a place where they are, and all they can do is refuse it?  Over what?  Pride?  Superstition?

And to put the icing on top, the teacher told me that while her sisters were wearing the best fashions, Sarah would get the ugliest clothes and her parents would not care to groom her at all.  Maybe clothing and grooming do not seem like “a big deal”, but to treat one child differently like this from your others simply because she isn’t “normal” is still disconcerting.  Maybe that child cannot express her feelings the way we can towards this, but I am pretty sure that she functioned enough to feel that lack of love from such lack of gestures.

I could pass judgments on these parents and Annie’s parents, and it’s very tempting to, but I realize it is all ignorance.  I do not think the South Asian community is the only one guilty of this.  Mental health is generally stigmatized around the world, but I would venture to say that in the South Asian community superstition combined with concern about what society will think creates a unique problem.

In another post, I will talk about a case of a South Asian woman who has given her developmentally disabled children all of the love in the world, despite the hardships she has personally faced and the lack of understanding from her surrounding South Asian American community.  Her example can provide hope for the way this issue is addressed in the community.

Till then, you should check out a really cool organization trying to raise awareness of mental health and developmental disabilities in the South Asian Community: My Sahana.  It is great to see other South Asians mobilizing on this issue!

Here is their website: http://www.mysahana.org/ or you can follow them on twitter @MySahana