12. Talk Linear To Me

“Talk Linear to Me”

As a fairly typical literature buff, I’m aware of how much my mental landscape is peopled by fictional characters, and how much those characters inform the way I process things. It’s just like there is a Lata or Rafi song for every emotion we experience; people leap out of novels and walk in the heads of readers, if we let them.

In high school, we read William Faulkner’s “The Sound and the Fury,” and these days, the character of Benjy flashes into my mind with increasing frequency.

We were too young to absorb the shock of what happened to Benjy back then. He is a grown man with developmental delays and synesthesia*. He is non verbal, but with a lucid inner life that informs his stream of consciousness, non linear, utterly honest thoughts. He reads the truth of a person through his senses.

It’s pretty clear to my autism mom self now that Benjy finds comfort in sameness. He likes to stand by the gate because he hopes his sister Caddy will return if he keeps watch. He gets upset if the gate is left unlatched, and some girls who walk by every day become scared when Benjy is trying to tell them why the unlatched gate is so awful. They claim that Benjy assaulted them, and as a result, Benjy, the ‘family idiot,’ is castrated.

As a family, we’ve come to accept that one of our main tasks is to preserve A’s life while he explores his world. He trusts us implicitly, and is terrifyingly, comically unaware of the many times we’ve swooped him out of harm’s way.

We’ve gotten better at getting him to focus, thankfully. He has to make eye contact, make requests in full sentences with his speech device, and pay extra attention to our voices in public. But it’s not a perfect science, and there have been many moments when his interest in patterns, lines and perspectives has led him to forget himself.

Our neighbors across the street have an etched glass panel on their front door. It filters light in beautiful, refracted rainbows, and A always wants to put his face up against that glass and study the refraction. The neighbors are very understanding, and give him lots of leeway, but we don’t want him to seem like Benjy, so we allow these visits very rarely.

A thinks these limitations quite unfair, and has managed, several times, to bound off the school bus and mad-dash partway across our busy street in pursuit of his beloved filtered light. After we grab him, he uses sign language to apologize, but with naughty laughter in his eyes.

Sometimes, we hear him rapping on his bedroom window, almost like he’s calling to the neighbors’ door. We ask him to stop, but have to stifle our own laughter afterward.

It is virtually impossible to expect people to fathom what catches A’s eye. But I confess we do sigh when new temptations are unknowingly placed in his path. The wonderful people who live next door to us are avid vegetable gardeners, and A took notice when they installed a fence. Fences make for good stimming. Alas, it is an electric fence to keep out deer, so that danger put paid to A’s lined dreams.

On the flip side, if stimming potential is destroyed, A becomes very distraught. He used to love the outdoors, and would ramble for ages on long walks with us, until one very cold winter, when ice and dirty snow stayed on the ground for weeks. The satisfying lines of the sidewalk were ruined for him, and ever since then, he steps outside only to enter the school bus or the family car. We can sometimes compel the issue, but it is so unpleasant for him and us–he sitting on the sidewalk, cowering and wailing, we being subjected to strangers’ disapproval–that we have thrown ourselves on the mercy of his home therapists to help. For now, the rest of us do walk all over our town, and when one of us leaves the house alone, leaving the others behind, we know that if we turn around, we will see A framed by a door or window, keeping watch as we so foolishly walk those crooked, sense-jangling paths.

The Benjys of today are the people whom we often view as ciphers, to be written upon at will. They are the pattern seeking children who get labeled as noisy, distracting brats, stared at and sometimes laughed at by other children. They are the autistic men and women who are perceived as threatening because they cannot tailor their sounds and movements to what others think of as ‘normal.’ They are the forgotten people who don’t get to have jobs. They are the ‘perps’ who get tasered by alarmed police officers, who may unwittingly speak to them in raised voices, thus worsening the meltdown. As their parents age and die, their behaviors have to stand up in the world, unprotected by the people who raised and loved them, and pass impossible standards. The stakes are so high if they fail. If the people whose judgment matters fail them.

Not every autistic person is a Benjy. Of course there are many loving people in their lives too, if they are fortunate. People who spend enough time with them that they understand what makes them happy or panicky. Trained people, bless them, who know how to draw them out. Caregivers who bond so deeply with them that they intuit the unspoken. The kind of police officers who recently showed up to a young autistic boy’s birthday party in Florida. The amazing policeman who talked so kindly to a depressed autistic teenager in North Carolina. As they grow to adulthood and are no longer seen as adorable or saintly (I can’t tell you how many people imbue A with this aura of otherworldliness), they need people around them who have actual, practical skills to connect them to society, and a genuine wish to see good in their efforts to speak what they feel.

We are all preparing A in a great many ways already. Everything is taught to him in logical sequence, repeated until he can do it himself without faltering. He asks for help when he needs it. He practices vocational tasks in preparation for future job prospects. As hard as it is to watch, in his therapy sessions, he has to use full sentences on his speech device even when he’s screaming. But we understand the long term benefits–if he can command his trained responses enough to speak clearly even when his mental imagery is overwhelming him, he has a vastly better chance of being heard. When he reaches high school age, we plan to introduce him to our local police so that they will recognize and understand that he is a little twitchier than other young men. The work is happening, to help him live an adult life where he can help himself, and be judged fairly. Maybe someday, he can tell you himself if we have been successful, if we all did a good job.

I have often wondered why Faulkner gave Benjy such a terrible fate, so pitilessly sketched out. This isn’t a critical exposition, so I won’t get into the larger tropes in the novel. But I think he did that because part of what illustrates a society’s moral code is how we treat the vulnerable.

It’s a very powerfully drawn truth. When we have created a mode of speech where linear narrative is prized so highly as the default, and our listening skills are not as developed as our wish to speak, we inevitably devalue those who communicate differently. When we have decided that mastery of the senses indicates a higher wisdom, therefore Benjy must be of a lower intelligence, we give ourselves permission to separate ourselves from the Other. When we imbue special needs symptoms with moral attributes (whether positively, by praising their unmaterialistic nature, or negatively, by castigating their karmic cycle that led them to this ‘unfortunate’ birth), we allow ourselves to judge them according to our smug sense of merit, and tell ourselves that they are happy enough, or living the life they deserve.

And when we lecture autism families to be more positive, to not dwell on these fearful outcomes, when we tout ‘cures’ for their children’s ‘afflictions,’ we silence them further.

It is an extreme portrayal, but Benjy is literally and figuratively FIXED. What is this righteous complacency that assumes he needs fixing or curing? That posits him as a saint or a savant in the abstract, but removes him from society rather than adapt the social systems to accommodate the presence of a Benjy? And we are not allowed to flinch from the fact that it is Benjy’s effort to communicate, the fact that people don’t understand his efforts, that earns him such an enormous punishment. Even as a teenage reader, that fact haunted my thoughts. Why should he even try after that?

If any fixing is to occur, let it be in our attitudes and assumptions. Let us first pass those tests of merit ourselves. Let us fix our own karma.

Radha.

*A description of synesthesia:
http://www.apa.org/monitor/mar01/synesthesia.aspx

3 thoughts on “12. Talk Linear To Me

  1. Hi Aparna, You are the first person to send me a comment whom I don’t know! Thanks so much for reaching out to tell me your impressions. It really means a lot. I feel so strongly about this issue, I’m sure you could tell… We owe it to our special needs community to try harder, do better, learn more, even just spend more time with them. I’m sure these words would mean more coming from someone who has autism. But I am trying my best to say it as I experience and observe it up close.

    I appreciate you reading this essay.

    Like

  2. I have only read this post once but your words are so powerful and brimming with truth. I will need to read them again and again. Please don’t stop writing. Thank you for sharing your truth.

    Liked by 1 person

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