What if someone made a compilation of your most vulnerable moments?
What if there was a running, public tally of your flaws and mistakes?
What if they told you that collection of fragile moments, flaws, and mistakes was all you were?
What if your needs, wants, and desires were judged solely on whether they were palatable to others?
What if you were treated as a set of behaviors with no intrinsic worth of your own?
It would hurt.
What follows is my contribution to the This is Autism flash blog, where many wonderful people have pieces that bring to life the beauty of divergent neurology. They are positive and glorious and you will be enriched by reading them.
However, bear with me while I am slightly less sunny. I am recovering from a couple weeks of trying to be a part of the world and getting smacked down with one access fail after another. I am cranky.
Suzanne Wright is the co founder of Autism Speaks along with her husband Bob. Last week, she wrote a vile fear mongering piece of hate speech, which is not shocking because fear and demonization is Autism Speaks bread and butter. They have used fear and money to build an empire bent on wiping autistic people out of existence. What shocked me was that this piece struck a nerve with so many people who had overlooked Autism Every Day and I am Autism. She explained that autism is living in fear. In that we agree, but while her fear is of naked hopping autistic refrigerator raiders making parents lives dreadfully inconvenient, my fear is of people, fueled by the rhetoric of the Wrights and others of their ilk, who want me dead.
Ms. Wright, This is Autism, the Autism you helped create.
This is Autism: Autism is having to work too hard.
The cultural pressure to pass is so intense, my failed attempts sneak up on me. Being natural or relaxed in public is impossible. While I’m a few generations too old to have been subjected to ABA therapy, the ABA paradigm colors how the world views us. Indistinguishable is good. Anything else is dangerous.
This is Autism: Autism is having needs treated as preferences.
Recently, I was to be involved in a project, about which I was very excited, designed to further the empowerment of individuals with developmental disabilities, but my statement of access needs, in writing, through proper channels, was ignored. I was not warned ahead of time that the environment would contain the very seizure triggers I specifically mentioned in my registration. I tried to tough it out, but after three seizures (not counting absence seizures) in less than two days, I had to admit defeat. Understand, I was dealing with people who are professionals in the field of developmental disability. These are the people who should already get it. By no means is a seizure disorder autism, but I do not doubt that my autism is why my needs were not taken seriously. It has happened too many times to be a coincidence. Autistic needs are viewed as wants, then labeled Behaviors. We are expected to control those Behaviors, or have them trained out of us.
This is Autism: Autism is having to explain myself over and over when explaining is the hardest thing to do.
When I use verbal speech to communicate, understand I am meeting you considerably more than halfway. I am expending energy that takes away from my responsibilities and loved ones. My reserves are not unlimited. If I then have to explain the same thing over and over again because it “doesn’t make sense” to you when I “look normal” or because you “know this other individual with autism who does that just fine” you insult me.* If you cannot give me enough time to form words without talking over me and (incorrectly) finishing my thoughts, you are disrespectful.
This is Autism: Autism is knowing no matter what, the majority of people I encounter will always view me as a little less than fully human. That is your legacy, Ms. Wright. In eight short years, you changed the dialogue surrounding autism. That is powerful, and impressive, and so very wrong.
There is a dollar figure attached to my right to exist. Do not tell me it is not there. That is a lie. I see it every time I look in the mirror as if tattooed on my forehead. There exists a ledger; a balance sheet of what I contribute and what I take.
Intangibles count for nothing.
Joy counts for nothing.
Every op ed piece I read defending food stamps or other benefits bend over backwards to point out the majority of recipients are employed. The majority are good people. Good people work.
But I do not work. I am autistic, and being the autistic I am means I am real world, social model disabled. I do not work because I cannot. There are a dozen hypothetical ‘what if…’ or ‘should be…’ scenarios in which I could hold down a job, but that is not my reality.
How much of myself do I have to lay bare for you to accept that work, as it exists today, is a thing I cannot do? I tried, and I had to choose between powering through another year or two that would kill me or come damn close, or admitting I cannot so my children could grow up with a mother.
My childhood was infused with a popular feminist theme. I was taught that a Real Woman is financially independent. She doesn’t need a man be it a husband or larger entity (The Man) to support her basic needs or the needs of her offspring. A Real Woman knows children are an accessory to a career, not something one builds a life around. I regularly heard the words “housewife” and “brood mare” used interchangeably. I am loathe to believe this is real feminism, because empowerment that exists on the denigration and neglect of other’s needs empowers no one.
Growing up, I was also told over and over again my worth was tied to doing Great Things. That lesser people lived ordinary lives, and that for me to live an ordinary life would be tantamount to complete failure. In order to be a worthy human, I needed to be financially independent while actively improving society. Nothing less would do.
So do I own my complete failure, or do I redefine what it means to do Great Things? I embrace both, which yields a very messy work in progress.
I started to apply for disability once, but every worker I spoke to asked the same question: if you are too disabled to work, how can you be a fit mother? I was told, repeatedly and in no uncertain terms that if I submitted an SSI application, a Child Protective Services investigation would be in my future. That is not a risk I could take. My children need me. I know this as much as I know anything. I am the best possible mother on earth for those particular children. That is not negated by my sometimes inability to speak, or walk, or work.
I cannot do it, and I am sick to my teeth justifying myself on this. I had to justify my dirt poor, EBT dependent self daily. Now I am privileged enough to not be poor. Now I am loved unconditionally for exactly who I am by a partner who can work, but I refuse to hide behind that veneer of acceptability. I cast off strangers’ easy assumption that I choose to stay home. If I could choose, I likely would stay home, but I don’t really have that choice. I’m too disabled for gainful employment, and it would be a slap in the face to too many people I respect to fake that.
So here I sit, grateful for the privilege of things I still do not take for granted. Indoor plumbing on demand. Food my children can actually eat. Health insurance, and the ability to make copays. But all those privileges; privileges that should be rights, do not make me a better person than I was when I bartered baked goods made with food stamp purchases for enough cash to make sure my cancer was still in remission.
I am just as autistic,
I am just as disabled, and
I am just as valuable.
I am sorry.
I want desperately to undo what has been done to you, and I can’t. I simply can’t. If you were one of my children, I would fold you in my arms and let you know you are a treasure. You matter just as you are. Not some trained, controlled, acceptable incarnation of you, but you in all your glorious, messy beauty. You deserve love and acceptance. It breaks my heart that you didn’t get that.
You deserve quiet, peace, and privacy. You deserve room to grow and a safe space in which to do so. I am sorry you didn’t have that space. I didn’t either. I did what I needed to survive, and I broke over and over again. My adolescence was a string of Faustian bargains, and I stumbled into adulthood yoked to some skewed culpability manufactured by the very people who forced me into those circumstances.
I grew up in a different time. There is no record of the events of my past, and I owe it to no one to dredge them up and justify my actions. All my supposed sins are my own. I can hold them close to me. I can guard my secrets, not out of shame, but out of love for my self.
I am sorry your pain was turned into a public spectacle. Do not feel shame. Do not be embarrassed. You are not to blame. There is a community out here waiting to fold our arms around you.
Because you are a treasure.
I should not need to explain myself, but I do. Over and over and over again because there is always someone out there who is certain they know me better than I know myself. When I have the option, I will choose when or if I use verbal speech, and my reasons are my own and valid. I am not obligated to be verbal just because it would make you more comfortable.
If I am using my few minutes of verbal speech with you, I am offering you something limited and precious. I have carved out a section of my physical health and peace of mind and given it to you like a pretty slice of birthday cake.
How long do most of my interactions with people take?
Three minutes in a drive thru,
Five minutes at the grocery checkout,
Ten minutes of social gathering small talk,
Fifteen minutes for a neighbor to borrow some sugar…
In my verbal marathon, at fifteen minutes I hit the wall. I can try to push past that, but there’s no guarantee I’ll finish the race. I am no longer running on solid ground. After fifteen minutes, maintaining verbal speech is like running on a tightrope. It wobbles. The margin for error is imperceptibly tiny. If I falter, the only option is catastrophic failure.
At best, I can walk this tightrope for the next twenty to forty minutes. These are the minutes when I stammer and rub my arms raw. These are the minutes when I say words that are not what I mean. These are the minutes I am locked in decades old scripts that do not allow for dissent or self preservation. In my head, past abusers bubble up to my consciousness screaming my failures, derailing my thoughts. These are my wounded animal minutes. I will accept almost anything, or lash out instinctively.
I cannot make it past those forty minutes. No amount of trying, wishing, or believing in myself changes that fact.
Forty minutes is just enough time to spend a life surfing the gap. I tried to make it in the work force, and it almost killed me. Not in an I’m miserable and want a good cry, a glass of wine, and ice cream sense (although that counts), but in a high blood pressure induced daily multiple blackouts and increased seizure rate sense. I have too little work experience to qualify for Social Security when I’m sixty-seven, but I am not able to qualify for SSI. If I honestly portray my abilities and limitations, I leave my children vulnerable to intervention by child protective services because disability in this state is still legal grounds for child removal irrespective of any other factor.
Most of my forty minute dog and pony shows are to keep judgement off my parenting. This is simply an extra responsibility required when parenting while disabled. There stands my line. I will not sacrifice my children at the alter of any cause no matter how just or righteous. What Should Be will not protect them, and my primary obligation is to their well being.
My father’s older brother was a quiet, brilliant man. My uncle was a slight built man with darting eyes that rarely met another’s gaze. His hands seemed like new tools he hadn’t quite mastered. They would shake as he lit a cigarette. They would fumble as he put together his clarinet, but once he had it assembled, with those long thin fingers in place, he was seamless. That clarinet was an extension of those hands, and it was perfection.
My uncle spent most of his time in a small garage apartment where he could read, make music, or sit amongst the gardenias and watch the squirrels play. It was his refuge, and he let few people inside. In the summer, he would often ride his bike to my grandmother’s house, but after a few minutes of trying to answer a bombardment of her questions over the din of the television he would become cranky and flustered, and we would walk back to his place. There, we could sit for hours listening to Stan Kenton or Chet Baker and blissfully not utter a single word. He was not like other adults. He was like me.
My father was charming. He had a quick wit, and an encyclopedic knowledge about darn near anything. He had a fearsome, exacting moral compass all his own. Integrity was everything to my father. People liked him. He did well out in the wider world, and he hated every minute of it. He hated the noise. He hated the groupthink. He hated the constant inane chatter. As intensely as he loved the human race and all the amazing things it was capable of, he could not tolerate being amongst his fellow humans and all the horrible things they were capable of. Much to my mother’s dismay, he refused to socialize. His tolerance for human interaction was only enough to tolerate his workday. My father would leave the house each morning with a palpable sense of dread, and come home each night exhausted. He would keep up this cycle until he could not, and then he would quit yet another job without warning, usually over an issue he saw as black and white but about which his former employer clearly disagreed. In between jobs, he drank.
My mother was a people person. Everyone liked my mother. She understood what people expected of her, and she never let them down. My mother was a self made woman. She never needed help or accommodation. She had the same game plan for all arenas; work, church, friends. Start at the bottom, do more than your share, keep your head down, and make people happy. This plan worked everywhere. No matter where my mother was, it wasn’t long before she was in charge.
Much to her dismay, none of this carried over to her home life. My mother was at a loss in how to deal with us. She was bewildered as to how people so intelligent were so incapable of success. She was crushed by the unfair hand she was dealt. She had played by the rules, and in return got a husband who could not support her, and a child who could not interact with peers, was constantly ill, and scared away babysitters. She found solace in the Bible, often describing raising me as her own personal trials of Job. By the time I was twelve, my mother had given up on us. She stayed because nice women simply did not leave their families, but she had lost all interest in trying to fix me. Her focus became her career and the relationships she formed in the workplace.
My mother’s detachment created some problems for me. My father had been between jobs for nearly a year. He was drinking liters of vodka a day resulting in auditory hallucinations; voices that told him I was an immediate threat to his safety. I was often forced to leave home for a few days until the situation calmed down. Whatever explanation my father gave my mother for my numerous absences, it must have been completely plausible. Any alternate explanation is simply too painful to entertain. I got by relatively unscathed. I looked many years older than I was, so it was easy to blend into the adult world. My grades never suffered, and I made real friendships, something I’d never accomplished among my peers in school.
In many ways my mother’s change of heart was an immense relief for me. While there were still medical interventions that I did not love, the lifelong string of psychiatrists, psychologists, hypnotherapists and the like came to an end. Ten years of strangers attempting to make me acceptable had accomplished nothing other than building a mountain of credit card debt. If I was going to find a way to make my mother proud, I’d need to figure it out for myself.
My top priority remained gaining my parents’ approval, and toward that goal, academics were my only successful outlet. In school, I was in a gifted program, which meant I spent most of my days with the same twenty-eight students for every class, twenty-six of whom shared a common background; white, wealthy children of “respected” families. They floated in a cloud of starched oxford cloth and Polo cologne. Gail and I sat firmly on the ground below that cloud, outcasts by virtue of her skin color and my neurology. No one was outwardly mean to us, but even at thirteen, the others had mastered the icy tolerance afforded obligatory tokens. Gail and I were more amused than hurt by this. Alphabetical seating kept us together, and this was not a movie where every socially awkward teen wants desperately to be part of the popular crowd.
One late spring day, there was a party invitation from Laurie on my desk when I walked into French class. Laurie was the ‘funny one’ of the very popular girls. She was snarky before snarky was a thing. She had a quick wit that stung. I’d seen girls driven to tears by her so often I lost count. Our only conversations had been her asking me for help with algebra, so I had no idea why I was invited. I assumed I would say I had other plans, and the matter would be dropped. Laurie would have met her obligation to be polite in inviting me, and I could avoid an evening of bad music and perplexing conversation. Brian, the boy every popular girl crushed on, sat down next to me and asked if I was going. I told him no, I had promised my uncle I’d spend the weekend helping him paint his apartment. Brian asked me to please reconsider. I was thoroughly perplexed but promised to think about it, and like an idiot, I kept my promise and really thought about it.
The more I thought about this party, the more I wanted to go. Not that the party itself held any appeal to me, but the concept of the party, the ability to go home and tell my mother I was going to a party with kids my own age was too enticing to pass up. I would be a teenager going to a party with other teenagers. It was my mode of operation to pick a television show or movie as a pattern for unknown social scenarios, and I decided this was Happy Days. What could be more normal than that? It took all I had when telling my mother about the party not to ask her if it made her happy that I was going, because I knew that was not what Joanie Cunningham would do.
My mother must have been pleased, because that Saturday she did not go into the office, but stayed home and ironed my shirt. I had not been able to reach my uncle to cancel our plans. He had a habit of not answering the phone, so he rarely got upset over information he didn’t receive. Mother promised if he called, she would tell him I’d be over the next weekend.
My mother dropped me off at 7:35 with plans to pick me up at nine. I knew the party ended at ten, but I also knew my limits. The party did not seem to be nearly as intolerable as I anticipated. We were outdoors, so the music was kept to a respectable level. I got a Dr. Pepper, and surveyed the landscape. I then placed myself one third distance from the center of the large patio, not so close as to be an actual participant, but not so far back as to appear aloof. My plan was to simply stand in that spot for a little over an hour, and I’d be done, but somehow, the cluster of people drifted outward, and before I knew it, I was drawn into conversing. I held my own, stutter fairly in check, when I heard Laurie say my name, “Bridget.”
“Yes?” I replied.
Slowly, savoring every word she asked, “Tell us, Bridget, is your dad still a drunk?”
While the girls tittered, I stood there frozen trying to collect myself. I had failed in my attempt at social normalcy, this had all been a colossal waste of my time, and I didn’t know how was I going to answer all my mother’s questions when she picked me up. I did not feel sad, or embarrassed, but since I had nothing to lose, I wanted to at least satisfy my curiosity.
“Why?” I wondered aloud. “What do you gain by asking me a question like that? I really want to understand.”
I startled as a hand touched my elbow. It was Brian. His voice was quiet, and angry. “Yeah, why Laurie?” He didn’t wait for a reply, but led me over to a bench. There I sat, eyes wide, watching Laurie’s party fall apart. The crowd drifted apart, divided by gender. The boys almost universally derided Laurie while the girls stood behind her, not saying anything in her defense, but unable to take the risk of going against her. I sat on that bench another half hour waiting for my ride home, while boys shuffled by with mumbled words of encouragement to insure I wasn’t sad.
I said little on the ride home, fending off questions with the very truthful excuse that I had a headache. I was weary from trying to be a part of the world and wanted the day to be over. I went straight to bed, thinking next weekend I would not spend trying to please anyone. I would go to my uncle’s, and paint, and listen to real music.
What I didn’t know was that night my uncle was also weary from trying to be a part of the world as well. They found his body that Wednesday.
I often don’t react to events in real time. The speed of my reaction bears no relation to the magnitude of an event. I need time to process. Time to sit on my feelings and sort emotion from fact, communication from gibberish, and truth from the convenient memes of utter bullshit that permeate any culture. I am careful in my reactions. I do not hold to the notion that if enough people say something, if they seem to know what they’re talking about, and if they say it with enough confidence, then it must be true. A lie told with authority is still a lie.
Do not mistake my quiet for silence. The words are there, and given time to parse them out I will endeavor to make myself heard.
I am a gentle person. I seek in all I do to harm no one, and like all humans, I fail more often than I like. But do not, under any circumstance, mistake gentle for meek.
So I want this understood by the person (and others of that ilk) who felt compelled to spend almost thirty days typing rape centered death threats coupled with my name into google so I could read them in my blog stats:
I am not afraid of you. I have not been writing because I have been busy with my life, not because you shut me down or put me in my place. No matter how many ways you combine my name with the words fuck, kill, and autistic in some pitiful rape culture “mad libs” game, it does not make me less of a person. I am real, valid, and surrounded by love. You are irrelevant to me.
The only reason I post this is because it stands as another piece of evidence. When autistics speak of hostility they face, that is not imagined.
When women posit that sexism still exists on an ugly, violent level, that is not imagined.
It took me a lifetime to get where I am; to reach a point where I believe in my own worth, and self determination.
Now that I am here, nothing you can do is going to make me go away.