On March 1st, 2012 my life changed. I had no idea it was about to change. I had no idea a single blog post would impact my life the way it did. I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.
I had no idea.
On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism. A post she’d written almost a year before, but I was only now reading. Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”
I had no idea.
I have read that post half a dozen times since I discovered it. And then I read her post just preceding entitled Grabbers. “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”
Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”
As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose. That they will then also find happiness I thought was a given. Or so I always believed. Does that mean they must be like me? Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness? Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself? Do I even know what happiness is for me, let alone another?
I had no idea.
These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming. I urge anyone who is not familiar with her blog to read it. Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.
Again, from her post Grabbers – (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)
“The hands are everywhere.
They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.”
“…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”
I had no idea and now I realize that claim begins to ring false, even to my ears. How was it possible to not have considered this? But no.
I had no idea.
“…Until you realize that the way you move is fundamentally wrong…”
The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.”
I am about four years old, we are living in the first house I ever lived in. Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.” I am sure she will not let me leave, but I cannot go to the bathroom on command. I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped. I sit staring straight ahead, wondering how long before she begins to yell at me. I am terrified of Mrs. Williams. She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks. Her skin is pasty white and hangs from her body as though it were half a size too big. But mostly it is her eyes, partially hidden by glasses lens that do not conceal her anger and resentment. Those eyes hurt to look at because I see so much that isn’t said.
Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush. I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.
“Your body is not your own, but it is mine...”
Julia’s blog was the beginning. It showed me a different path and urged me to follow it. I did. Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs. Because of Julia’s blog I met my mentor and friend Ibby. Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future. Because of Julia I have become a (I hope) better parent. Because of Julia I see the world differently. Julia’s writing opened my eyes. I wonder if any of us can ever really know how deeply our words can impact another. I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.
Julia lit the way.
Julia created The Loud Hands Project.
Julia, with ASAN (Autistic Self Advocacy Network) put together the must read anthology, Loud Hands: Autistic People Speaking.
Julia is also the editor of the just released And Straight on Till Morning Essays on Autism Acceptance. I just downloaded this book from Amazon for $2.99 and encourage everyone to do the same!
Julia’s writing gave me insight. She confronted me with her truth. She makes me think and rethink what I believe, what I think I know and she has made me question everything. This post doesn’t do her justice. How could it?
To Julia ~ Thank you ❤
Beautiful post, thank you. I am so new to all of this social media and it can be overwhelming, so I want you to know how helpful your posts are in finding direction! And I will most definitely be visiting Just Stimming. It’s not just NTs that learn from autistic people – the brief snippets from Ms. Bascom that you shared were touching and incredibly insightful. We ALL have so much to learn from each other! Thanks as always ❤
Aw… so glad Renee. Julia really lit the way for me. And she also is an incredibly talented writer…
Thank you, Ariane. I can so relate to the enlightenment and influence of autistic adults, including Ms. Bascom.
When the doctors first mentioned something was “wrong,” we chose not to engage in the therapies and madness (I’ll call it madness because that is what was presented by “professionals”), and it was the best decision we made for our child. The focus was so much on her behaviors when all we wanted was to help her communicate. But I also realized that we resisted the word “autistic” out of fear of her being labeled and judged, and there was so much negative focus on autism from the professionals.
Eventually I began to read about neurodiversity and positive ideas from autistic adults; and in them, I began to see my child. I began to realize that “autistic” meant a community for us, a positive space, even a safe space to be herself and to embrace who she is as we embrace who we are as a family.
A moment of clarity for me was the video of Ms. Durbin-Westby’s trying to force speech. In that moment, I saw my little girl, the same way she kept trying to force sounds out (my God, she even had the same expressions!), and I realized how wrong the experts were who were telling us she “won’t let us in until she is confident” and “she is a perfectionist who won’t speak unless she is sure she can say it right.” How incredibly insulting! Here she is struggling with something she can’t control, and they present it as if it were somehow her choice. All I wanted was help in finding other ways for her to communicate, and instead, they focus on her movements. Absurd!
I am so grateful to Ms. Durbin-Westby. And I am grateful to Ms. Bascom for making me realize that I never want to be a “grabber” and how important it was for my girl to have the freedom to move those hands and fingers without fear. Sorry for going on, but having a community, even on the Internet, has been amazingly positive for us. Thank you all so much!
So glad Paula’s video was helpful. Did you see the interview I did with Paula for Huffington Post? It was in two parts, and we put a revised version of the video on the interview!
i can so relate to people treating your body like it’s theirs and not yours sometimes people do things for me even after I ask them not to it makes me feel so powerless and violated.
Did I ever tell you my father spent the last decade of his life in a wheelchair? He hated going to the doctor, he hated having people “do things” for him. He used to say “my legs don’t work well, but my brain is just fine.”
Reblogged this on Welcome to Breannaldh's World and commented:
Normal people who need a little help to tell you what they feel.
“Exactly like them…” (speaking of those predators named ‘grabbers’)… You do know what that means, don’t you? Not merely that autists aren’t ‘human’? (the horror… I was right… how I wish I was wrong…)
The sole ‘appropriate condition that Normal society allocates to autist is that of ‘worshipful supplicant’ – a place where the individual untermensch becomes not merely his/her Normal master’s PROPERTY, but in fact part of that master’s being – in short, an ‘obedient bodily extension’ having no existence apart from that very same master.
When this happens, said master’s expectations change: only absolute moment-by moment perfection will serve
continued from earlier post due to misbehaving .
This demand for perfection means that mere ‘normalcy’ will never be sufficient.
(no trace of autism must remain…)
Such persons must become ‘more normal than normal’: dead inside, truly empty, like a formless vacuity that can become whatever its ever-changing owners wish to see; a being without limit, whose sole thought is “how do I pleasure my (current) owner?”
When the owner thinks themselves to be superior and entitled to that degree, only one type of person will suffice.
Such owners are indulging their instinctual narcissism – and such people WANT psychopaths – psychopaths of a most particular sort.
Be careful when you long for that type of a djinn – it just might prey on YOU one day.
( better to just help autist be what they were meant to be, and not be so focused on ‘The Cure’. Said cure might be worse than the ‘disease’…
Dennis – just wanted to thank you for writing this. I will never fully know what it is like to have so many treat me as my daughter was treated so early in her life at the hands of all those early interventionists. It is my living amends to her to make sure she is not only supported and encouraged, but celebrated for being who she is.
Thanks again Dennis. These are powerful words you’ve written.
A novel is percolating with my mind. Proposed title : “The Cure.”
At this time, it deals with a pair of ‘wealthy self-absorbed parents and their most-recent ‘acquisition – boy… Very odd boy – really bright, quite strange – “he refuses to make the usual baby noises! He isn’t crawling! Oh, the shame…”
Boy’s talking in complete sentence before he’s a year old, and Running by eight months…
“But he’s not Normal…!”
Sent to be fixed in a disputed corner of Eastern Europe – three countries fight over it, none of them do much else, and the local version of the Mafiya runs things – including the ” Institute for Cure”. Cures what? (If you have the money, we can cure IT.”
Boy returns a year later as one of those previously-mentioned Djinns, and while his parents initially are VERY pleased at his miraculous change, the reality is Boy has gone from ‘really bright and really strange’ to ‘someone that makes people
Smelly tablet is playing up again..
…’someone who makes Rhoda in “The Bad Seed” look like a truly nice young girl’.
In short, Boy develops a severe case of ‘learned psychopathy’, and is ‘inhabited’ as well – which means he’s become utterly and irredeemably evil. More, he’s also become a stone killer, too clever by a thousand miles to get caught.
The Vory (mafiosi) did their work well. Boy is a true ‘thief in law’ : without ANY shred of a conscience, plans ahead, defers gratification, feels nothing save greed and anger…
Moral: “sometimes it’s better to let a ‘sick dog’ alone…”
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