165. The Coffers of Shame

“The Coffers of Shame”

By now, even if we (well, I) have not been able to make ourselves watch the video, many of us are aware of the Australian boy, Quaden Bayles, whose mother made a video of him crying from the stress and grief of vicious bullying directed at his appearance (he has dwarfism).

I think we really have to stop now. We need to be asking ourselves why we need these expressions of pain in order to know even the tip of the iceberg of how isolating and horrifying it can be to deal with the abled world. It trips off our tongues and keyboards so easily—oh, just ignore, and live your best life; look at This Person whom I found on the internet, who has Risen Above their disability; find your worth; let us all lighten our wallets to fund the Shame Coffers. See? Quaden has money and fame now. Collective sigh of relief. The world is not so bad. People really need to be more open about what they’re going through, otherwise how will we know? More stories and videos I can share, please. Why did the mom make that video? She is exploiting her kid. Also, why don’t people focus on the good more? Bullies only rule us if we let them. Cue the hauling out of anecdotes.

Whether we are the kind of parents who would film our kids out of desperation, because schools are refusing to act; or whether we are the kind who virtually disappear our families from public spaces because the burden of pandering to abled families is going to finish off whatever spark we innately possess, is not what concerns me. I think that is a way to shame people who are already living with emotional trauma, and I am not interested in participating in that sort of blood sport.

Let us do our own work. How do we react when these pictures and videos come to us? Caste related murders; brutal sexual assaults ending in acid and fire (we seem to become outraged enough to protest only when it happens to people from class and caste groups we identify with); unending violence inflicted on the transgender community. The angry, phobic responses we indulge—resentment about how “THEY love to play victim, when they actually ‘enjoy’ so much privilege. How we don’t see differences; we are made from pure love! It is others who sow the seeds of discord. We have problems too, but you don’t see us taking it to the media. Quaden’s mother must be feeding him sound bytes of outrage, otherwise he wouldn’t know to talk about racism.” I’m sure you can hear me scoffing in New Jersey. Kids understand racism and other bigotry perfectly well, whether they are believed by adults or not.

Also, why don’t schools act more often? In our experience, stringent laws exist on the books that require schools to act on harassment, intimidation and bullying, but extremely magically, the targeting of special needs children is often found not to “meet the definition of harassment, intimidation and bullying,” and we can hear the sound of collective hands being washed, the purging of responsibility for what is perpetrated on our kids every day, even by teachers and staff. Look at how often the confluence of factors works in the favor of bullies. Their families frequently know the right people in the district; they usually benefit from institutionalized racism; they are good at picking targets who don’t have these protections; if they are kids, they may have parents who are good at bullying and intimidation too; and if they are adults, they are skilled at constructing narratives that implicate the cultural and innate behaviors of minorities.

As parents of special needs kids of color, we have heard a great many excuses, and watched people contort themselves into pretzels to justify placing the blame back on us. For these and other reasons, I will never again trust a mainstream public school with A’s wellbeing. Whenever I say these things, people will invariably tell me how it was wonderful in their own child’s school. That’s really good to hear, but it tells me that we depend too much on the compassion of a few good eggs, and otherwise, oh well. Plus if I listen carefully enough, I can usually discern that the parent talking to me learned gradually to lower the bar, and that’s a NO from me.

The language of the work done by school psychologists is also worthy of scrutiny. R pointed out that anti-bullying materials invariably avoid talking about how disability and race are used to stigmatize certain students. He presumes, and I agree, that this skittishness is because of not wanting to alienate the privileged. I can also think of two appalling instances when school thought it a good idea to have kids play psychologists, and quack diagnose various symptoms as bipolar, ADHD, etc. This is really not okay, and I had to go tackle that one, which, as you can imagine, they loved me for. :/

I was looking over some materials sent home from an anti-bullying workshop in A’s school. What are some ways you can respond to a bully? According to the worksheet we got, our kids can a) avoid the bully, b) stay calm and confident, and c) tell an adult. These suggestions are worse than useless even for vulnerable abled kids, but for the nonverbal population, for the people intellectually disabled enough that they cannot always understand what is being done to them or said about them, I cannot express enough how inadequate such advice is. I won’t break any confidences by sharing stories that are not mine to tell, but so many come to mind.

I’m not worried about A’s school life so much, the staff are on top of things, but in the community, there is a victim blaming component to such approaches. “Well, did you tell them to stop?” is incredibly harmful to ask a rape victim, for example, but courts do it all the time, don’t they? And if you add in intellectual and possibly physical disabilities, I think we are giving ourselves a huge pass by placing the onus on victims to behave in ways that they simply may not be able to.

Our kids are not entirely helpless by any means. They have innate gifts of their own, and are savvy in ways we can only be amazed by. But they are vulnerable. This is a fact. And I would like us as desis to look into our own hearts at how we prioritize the wellbeing of the abled. How we look the other way when abled kids form cliques, which we encourage so they have companions in their myriad activities (Sanjana will only join Girl Scouts if Chloe does too). How we seek to ally with privilege so that we can rise. How we clear every obstacle standing in the path of abled kids’ race to the top.

Mostly, we expect and demand the labor of the disabled and their families—to spend their lives disproving bigoted claims which impact them in every way, barring access to community life, support services, adequate healthcare, and so much more. I am strongly reminded of Toni Morrison’s words about racism:

“The function, the very serious function of racism is distraction. It keeps you from doing your work. It keeps you explaining over and over again, your reason for being. Somebody says you have no language and you spend twenty years proving that you do. Somebody says your head isn’t shaped properly so you have scientists working on the fact that it is. Somebody says you have no art, so you dredge that up. Somebody says you have no kingdoms, so you dredge that up. None of this is necessary. There will always be one more thing.”

Now I know that some of you might be thinking of instances when your kid may have felt creeped out by a special needs classmate, how they can become doggedly attached to the idea of friendship, and not understand when their advances are not reciprocated. You might wish for that stuff to be called bullying, and insist on the school addressing it, especially when it comes to boys making girls feel uncomfortable. I have nothing but sympathy for kids who find themselves in such situations. It’s often the nice kids who get hand picked by teachers and told that they have to include So and So, sit with them in class and at lunch, and so on. This is where I think that fudging, and refusing to tackle these things, is so risky. Schools should be doing a lot more than merely stabling kids together in inclusion classes. It is a project doomed to failure unless EQ issues are also addressed, and some schools do a vastly better job of it than others.

I see all the time how A’s behaviors can make other kids nervous. In their minds, he has advantages they don’t have. He appears to get away with tics they have to control in themselves. At extra curricular activities, I’ve observed how the other kids try to win our adult attention, or that of his therapist, away from A and towards themselves, because they are fascinated by the idea of someone having endless access to grown up engagement. They are jealous if he uses his iPad to communicate; they see it as cheating. They are bothered by how he sometimes flouts the rules of the group. And so on.

These issues can be worked on, and regular exposure to disability helps. If we are content with merely clumping the differently abled together without doing the work, resentment, exclusion, and paranoia are allowed to flourish. After that, it is disingenuous to wonder why someone who is marginalized this way has to spend their life proving they have value.

Radha.

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