92. A Sibling’s Conscience


“A Sibling’s Conscience”

Lately, R has been on a reading binge about special needs families. It started when his English class read “Of Mice and Men,” and the tenor of the discussions, and the scope of the research project, bothered him deeply.

I will straight up tell you that, despite having been an English teacher myself, and seeing what the teacher was aiming for, I was solidly with R this time. Abstract opining about the developmentally delayed vs actually living with and deeply loving someone who manifests those symptoms—they are miles and miles apart. And R should not have to lay his home life bare to his classmates in order to be understood.

That said, we talked about how school is sometimes like that when you are a racial, religious, or any kind of minority. Stuff gets said in class as if it is the default, and we have to keep our heads down and our mouths shut, and go home to vent our frustrations at being so little represented in what we are reading in class. I remember this feeling very keenly from growing up a racial minority and attending a non-diverse school. Whether people mean well or are being openly bigoted doesn’t even matter in the end, when you have to disconnect your mind from your lived experience in order to get good grades. You can end up feeling like you sold pieces of your soul for each grade you purchased with your complicit silence.

Since then, R has been bookworming his way through the local library, enlisting the thrilled librarians to help him find books about people with autism. I think he is enjoying the sensation of imposing more satisfying and sensitive narratives over the one that disturbed him so much. Some of the books are better than others, according to him. The ones that annoy him the most are the ones that try too hard to be understanding. And here is where I concur. Sometimes autism whisperer stuff can be just as isolating for people like us— input that comes with good intentions but causes damage because it is so simplistic and unlikely to resonate with the complexities we are living with. The damage arises from the fact that people can end up further isolating us when their good intentions don’t ‘bear fruit’ because we are not reacting the way we are ‘supposed’ to.

If you couldn’t tell by now, I am immensely proud of R for taking this on. What he’s really doing is exploring what it means to be a sibling of autism, and how the representation of autism matters, and should not just be to add a cool factor or shock value or diversity quotient to whatever else is going on.

R has been in the front of my mind because we go to the library together quite often, and I recently read Akhil Sharma’s novel “Family Life.” The author modeled the plot on his own immigrant family’s experience, and I kept hearing R in all the narrator’s observations.

The narrator is Ajay, and after his family moves to the US, his older brother Birju, who shows great academic promise, hits his head at the bottom of a swimming pool and becomes brain damaged because he was not found for three minutes. The family’s life is changed forever as they give up their usual immigrant aspirations and become tethered to the realities of endless caregiving.

I really don’t want to spoil anything for anyone who wants to read the novel. So I will just touch on the parts which struck me hard as a parent observing both a high needs child, and his endearing, heartbreakingly understanding sibling. We want to do justice to everyone, and sometimes we end up feeling like we do nothing well, like all we did was get through another day. That’s the truth. This book is about people like us.

There is the progression of awareness in the sibling’s mind. As Ajay moves from knowing his brother has been injured (hoping he dies so that he can now be the favorite son; envying him his invalid life and not having to attend school anymore; fearing that God is punishing Birju because Ajay was not good enough) to realizing that Birju is not going to recover, I kept having to swat away tears as I read on in anguish and knowing.

Sharma also traces unerringly with an experienced hand the words of a child observing his parents’ struggles. Here is where he really excels. Not only has he nailed the immigrant child’s hyper attuned senses, watching people alternately pity, ignore and despise his family, but also the special needs sibling’s wretched guilt at being the one who gets to succeed, live an outside life, leave his parents behind to their repetitive life. That knowledge that other people in your community can occasionally tap into your reality, and more often exclude you from their celebrations and be unaffected by your ongoing struggles. That if they look to your family, it is sometimes for a display of nobility and self sacrifice.

The realities of physical care are starkly laid out. How, at first, the family has an optimistic and grateful spirit when they bring Birju home, not wanting him to be institutionalized and neglected. They try to normalize how tedious and exhausting and downright nauseating it can be, but when Ajay sees that his parents have no real plan or answers, that they are winging it and relying on miracle cures and prayer, he becomes despondent and lost, with no one to say to, “I am suffering,” because Birju is suffering more, and always will be, and his parents have lost their aura of all knowing power in the face of this trauma. Their grown up arguments about being ‘too nice’ while nurses drop the rope appallingly on Birju’s care, and insurance coverage is denied to them, are certain reading torture for anyone whose family has dealt with a mountain of responsibility like this, and worries that we are being shortchanged because we don’t know how to fight for our rights in a country that can seem cold and bureaucratic to us.

The parts that hurt my heart the most are when Ajay tries self consciously to play like a normal kid, or tries and fails to make friends. I have so much baggage about this side of R’s life, and even knowing that many siblings go through this does not assuage some of that burden. Like R, Ajay escapes into books, and he sees the various events in his life as writing fodder—his family’s struggles, his dad’s alcoholism, and the racism he endures regularly.

Sharma is a master at depicting the way the Indian community both supports and exploits Ajay’s family’s situation. I will leave the details to you guys to read on your own because it’s worth doing. But a couple of things stand out. One is how people revert to a kind of folksy superstition, gathering around the family to help, yet trapping them in a facade of perfection that cannot help but crumble. This plays out while the parents try not to rely too much on the support, gratitude and discomfort inevitably clashing. And the other is how Birju is revered as a helpless saint, how he and Ajay become tools for others to teach their kids to be more grateful, more filial, more vegetarian, whatever.

As a child of immigrant parents myself, I was amazed at how well Sharma explicates why kids like us can grow up psychically tethered to our parents:

“..we Indian children…felt that our value was to some extent based on our parents…we felt endangered by the world we lived in, and so to speak ill of our protectors was to make the danger more frightening (201).”

Ajay finally achieves the immigrant success story, and his financial contributions help ease his parents’ difficulties. But he never sheds the guilt of being the child who escaped, and doesn’t know how to enjoy moments of contentment. The burden of normalcy is one the sibling of special needs must always carry.

Developing a sibling’s conscience about special needs; standing up with your parents to do the right thing even when it’s too much; making space to have your own interests, personality, hopes, even disappointments—I see R growing in that capacity all the time, and in those moments when I am able to set my mom guilt aside and just make it about R, I see a kid who already knows he can be counted on, and who is educating himself because he wants his mind and heart and lived experience functioning in unity, as they always should be.



Sharma, Akhil. Family Life. New York: W.W Norton and Co, Inc, 2014.










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