by tara sayuri whitty, speaking ally
I remember when my little brother Danny lost his words. It’s one of my earliest memories, and it’s strange that it is a memory of loss. I don’t remember him starting to talk. Just the sudden stop. And throughout my childhood into adulthood, pretty much every opportunity for a wish – birthday candles all blown out, a stray eyelash, dandelion poofballs, shooting stars – I would wish, from the core of my heart, for his words to come back.
It’s surreal to be on the other side of that wish coming true, about thirty years later.
Because it did indeed come true. Though really, his words never left him – just his ability to communicate them. Our mother learned about Spelling to Communicate (S2C), and when Danny tried it with an expert practitioner, his words came tumbling out in beautiful, vibrant lines.
About three years ago, I moved back home to focus on being Danny’s communication partner using S2C, and we attained fluency quickly. He often speaks of his universe opening thanks to the regular communication access he now has. My universe has also opened as I get to know my cherished brother’s actual words – his thoughts, feelings, and jokes – after more than three decades.
It’s surreal to be a part of that wish coming true, to be immersed in it.
Surreal, and humbling. Because I’ve learned that someone’s access to communication is huge, beyond anything a vague wish could conceive of, and this had somehow never occurred to me before. I’ve learned that, in my ignorance, I had said and done things that were so deeply disrespectful to Danny without having the slightest idea how wrong or hurtful they were. I’ve learned that, even with what I know now, all the things I need to unlearn are more persistent and ingrained than I’d ever suspected.
Reaching the awareness I have now of my brother and his disability – his apraxia, the motor coordination challenges that impede his ability to move his body as he truly wishes – has required me to acknowledge all of the ways that I’d been wrong. An excavation, grimy and arduous and painful. Excavating all of the ways I’d hurt him when all I really wanted to do was to show him love. All of the ways I’d let him down, and sometimes still let him down in moments of weakness.
It is a punch to the heart. It is the kind of guilt and regret that makes me want to stick my head in the sand. To not be there for someone who we love so much has got to be one of the worst human feelings out there.
But this heart-wrenching reckoning is a necessary step in healing, growing, and doing better. Each new realization, each new gift of awareness and knowing better, also risks that ache of regret over things done before. And that’s just part of the process.
Of course I’ve gained greater awareness of who Danny is as a fully realized human, and of the reality of his disability. I’ve learned that he is a scintillating writer, profound thinker, gregarious friend-maker (way more than I am!), brave waterperson, and determined advocate. I’ve learned of his traumas and serious internal struggles, just as I’ve learned that there are breathlessly gorgeous components to his autistic experience. I’ve learned that autism is not something to be “cured” (another cringe over things believed before: my fervent wishes for him, over time, mutated to “I wish for his autism to be cured”). And I’ve gained so much more awareness of disability justice.
But I’ve also gained greater awareness of myself and of what it means to be an ally. I’ve reckoned with the fact that, though I generally assume I’m a good person, I allowed myself to discount Danny and his rights and possibilities over the years because he couldn’t communicate. This was a sobering realization: that I, for most of my life, could be so ableist in such fundamental ways. I’ve also realized that many of my long-held assumptions about Danny were… wrong. And that many of the things I’d done that I thought were helpful for him were… not helpful. Grimy, arduous, painful digging – but necessary.
I’ve also finally started excavating my previous, almost life-long aversion to cultivating any awareness of autism beyond being Danny’s sister. Some context: I’m now in training to be a practitioner of S2C. And since I made the decision to pursue this certification, to support other nonspeakers, I’ve unearthed a memory that is almost 20 years old: Dr. Bernard Rimland, a close family friend, looking at me sternly when he learned of my post-college plans to study monkeys in a forest in Thailand. “Wouldn’t you rather be helping people with autism?”
Now, I know that Dr. Rimland represents a mixed legacy in 20:20 hindsight, but to us, he was a generous and genuine friend for many many years. And I was shattered by what he said. Because I had long harbored an ugly, tangled, unexamined guilt over not doing more for Danny – and not wanting, really, to pursue a profession related to autism in any way.
In the 1980s and 1990s, when we grew up, the information landscape on autism was much more sparse. Family members – unless you were lucky and also had the resources to be connected to the few experts who turned out to have less harmful notions of autism – were left in the dark. What on earth could I do for my brother, besides show him love? My powerlessness made me shy away from learning more about autism. I rarely read any books on it. I couldn’t handle it. It was too close to home.
I also got the sense that a lot of the information coming our way was built on shaky foundations. This grew in the early 2000s, as information accumulated and the internet spread it far and wide, and as I pursued a rigorous education in the sciences. I saw the sloppy science and the quackery rife on the message boards that desperate parents flocked to. This made me withdraw even more from trying to understand autism. I cringed every time my mom would breathlessly share the latest possible “treatment” to me. I had no idea what information to trust, so I couldn’t bring myself to read any of it. I just had to tell myself that showing Danny love, and continuing my wishes, was all I could do.
I gravitated more toward studying the conservation of animals rather than my once-expressed aspirations of helping people with autism through research. How could I pursue a research career focused on autism that might well achieve nothing tangible that would help my brother? What if I spent my life going along some ultimately dead-end path in that research, failing not just as a scientist, but as a sister? It would devastate me, absolutely devastate me.
So, in my recent exploration of my past, chosen ignorance, I’ve had to acknowledge that I’d been a coward. But I also see how feelings of powerlessness and a lack of any trusted source of information made it difficult for me to be anything else. And that’s a kind of awareness, too: for people to be empowered to be the best supports possible for their nonspeaking autistic loved ones, they need trusted support, too.
Lest you think that I’ve been solely consumed by self-loathing over past mistakes: I’ve also gained awareness of the immense beauty of forgiveness and healing, of my brother’s ability to have seen the worst of me yet to still love and trust me. Of the profound and shared love when you fully support someone through their difficulties and find that they, too, can support you through yours. Of how much the world gains when more people are able to access their voices.
I know that my awareness of what my brother and autistic friends experience will continue to grow and will, likely, require further corrections over time. And I’m fortunate to have the most fantastic, and patient, guide in my brother. And all of that grimy, arduous, painful excavation has built a foundation for this: a time where my wishes now focus on the meaningful work Danny and I will do together to make this world a better place for nonspeakers.
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