On Saturday, September 28th, members of the Washington state chapter of the Autistic Self Advocacy Network gathered at Seattle Center, despite the rain and wind, to protest the latest fundraiser for Autism Speaks, an organization that has consistently demonstrated its lack of regard for the priorities of the Autistic community. What our community needs is a focus on promoting self-determination, improving our quality of life through systemic supports and services, and making the world a safer place for us to live in by working to destigmatize Autism and Autistic behaviors. Instead, they undermine our autonomy with a paternalistic leadership structure that includes no Autistic people, they focus their research budget on finding ways to eradicate Autism from existence rather than finding ways to help us live in the world as the people we are, and they reinforce the stigma against us by using fear-and-pity-driven fundraising and marketing tactics that endanger our lives by poisoning society’s attitudes against us.
When Autism Speaks and similar organizations cast Autism itself as the enemy, and dedicate themselves to fighting against it and stamping it out, they position themselves as the enemy of Autistic people. Autism is a fundamental part of how we recieve, process, and express our experience of the world; it is inextricably intertwined with and inseparable from the things that make us the people we are. When doctors, therapists or parents attack Autism with agressive and dangerous “treatments” designed to remove or suppress this part of us, it is the Autistic person receiving those treatments who suffers the harm, not a nameless, faceless “disease.” When our loved ones denounce Autism as having destroyed their lives and ravaged their families, it is our hearts, minds and souls that break under the weight of their message that this deep part of who we are is responsible for their misery. We know that the thing they hate and want to destroy is actually US, whether they believe it to be or not, and we carry the wounds from their rage-fueled attacks upon our neurology.
On that rainy Saturday morning at Seattle Center, we showed up to take a stand against these attacks, and stand up for our right to exist as the Autistic people we are. As participants in the fundraising walk for Autism Speaks streamed past us, we held our signs and alternated between chants of “Autism Speaks Doesn’t Speak For Us” and “Nothing About Us, Without Us.” We received plenty of blank stares, some looks of confusion, and a few shouts of anger. The moments that really mattered, though, were of a different character. The pair of young children that came up to us during the walk, full of questions; the family who came by after the protest to thank us for opening their eyes and motivating them to take a closer look at Autism Speaks; the couple who had heard about our protest and dropped by to express their support and make a donation.
In those moments, as they walked away with our flyers and brochures in hand and our words in their thoughts, it was clear that our message is getting out there. Our community is growing, a community of Autistics and those who truly support us as the people we are. And we are changing our culture’s conversation about Autism, changing the world for the better. As the value of supporting and accepting neurodiversity becomes clear to more and more professionals, educators and parents, and as the influence and perceived legitimacy of organizations such as Autism Speaks continues to dwindle, we are building the hope that one day, we will live in a world that embraces and welcomes us, rather than shunning and feaing us. And we shall all be the better for it.
Well, it’s involved enough sleep-deprivation that I barely feel competent to write this post right now, but… we did it. We won.
Their response to all of this:
"Our Research Institute recently launched a bus ad campaign to raise awareness of the work our scientists and clinicians are doing to investigate causes and breakthrough treatments for diseases and conditions such as cancer, diabetes and autism.
"Members of the autism community have reached out to us requesting that these ads be removed as they are perceived as hurtful to children and adults with autism. Here at Seattle Children’s we take great pride in the work that we do to provide the best care for all children – including those on the autism spectrum - as well as the research we do to prevent and better treat pediatric illnesses and conditions. Many of our researchers have dedicated their lives to better understanding autism and developing innovative approaches to support the autism community.
"We are sorry for the hurt and anger these ads have caused – that was never their intent. We at Seattle Children’s fully support the autism community, and have therefore made the decision to remove these ads starting next week."
My response to them:
"Thank you. Will this extend to other ads in this campaign that lump autism in with life-threatening conditions, and call for it to be cured? My friend and I saw another unpleasant advertisement last night that ran before a showing of Star Trek at the AMC theater (we were seeking refuge from the sensory overwhelm of July 4th fireworks displays). We saw this ad as similarly disturbing. ASAN would be happy to work with you to help identify which ads run afoul of toxic memes about autism.
"Also, please note that the community of actual autistic individuals prefers the term "autistic community" when referring to us, rather than "autism community". This helps differentiate us from groups that involve themselves with autism who often don’t have the necessary perspective to serve the actual interests of autistic people in an effective way."
I’m looking forward to a satisfactory resolution. :) Thank you to everyone who helped boost the signal and/or took the time to contact SCH. We all made this happen together.
The autistic community KICKS ASS.
Imagine it: you’re walking home from school or work, when a local city bus drives by, with a gigantic ad plastered across it picturing a smiling young boy. The ad cheerfully asks the reader to support a pledge to make sure that you, yes YOU, and anyone like you, the community you belong to, your entire people, would be wiped out of existence within that young boy’s lifetime.
You feel sick, and afraid. Your world feels tilted on its side as you try to regain your sense of reality. Why are they doing this? you wonder. Why are they saying that? Why do they hate me so much? And as all around you, people walk by like nothing is happening, you wonder, Why doesn’t anyone see anything wrong with this?
There are some of us who don’t have to imagine what this is like. For some of us, this is our reality. A friend of mine, a fellow member of the Autistic Self Advocacy Network, had a reaction much like I just described after seeing this ad on a Seattle bus the other day:
(Image description: A green and yellow bus on a Seattle city street, with a huge white and blue advertisement on the side. The ad shows a picture of a young child, next to the words: “Let’s wipe out cancer, diabetes and autism in his lifetime.”)
Some of you may not see anything wrong with this ad. It may look to you like a simple message of hope, calling for an end to medical conditions that destroy lives. But despite popular opinion, that’s not what autism is. Unlike cancer or diabetes, autism is not a life-threatening condition. Autism itself often enriches lives; it is the fear, desperation and hatred that our culture currently holds for autism that can and does destroy lives.
In fact, many autistic people regard our autism as an integral part of our self-identity. We draw strength from understanding ourselves as autistic people, as individuals and as a community. It is part of our brains, a fundamental part of the way we see, think, and experience the world. It is a part of what makes us who we are, and cannot be separated from us. When we read a sentence about “wiping out autism”, we experience that as equivalent to saying “wiping out autistic people.”
Our community is still reeling from the death of Alex Spourdalakis, a 14-year-old autistic boy, who was brutally murdered last month by his mother and his caregiver. This kind of killing is far too common, almost a monthly occurrence. These kinds of murders happen because parents of autistic children are taught to hate and fear autism, and see it as something to wipe out and get rid of. Ultimately Alex’s guardians were so desperate to get rid of it that they killed their child, because when it comes down to it, you simply can’t eliminate autism without killing autistic people.
Rhetoric about autism as something to be wiped out, like a terminal disease, equating it to degenerative conditions such as cancer, functions as a very real form of hate speech that leads to disability-based hate crimes like the murder of Alex Spourdalakis. In the interest of the physical safety of the community of autistic people, the Washington State chapter of the Autistic Self Advocacy Network calls upon Seattle Children’s Hospital to immediately remove these ads from circulation, everywhere they have been placed. They are not merely offensive; they constitute extremely dangerous hate speech against a vulnerable minority population. And they make us feel very unsafe walking Seattle’s city streets and riding its buses.
We don’t need or want campaigns to wipe out autism, we need a campaign to wipe out ABLEISM. Care to join us in that campaign, and support our call to have these insensitive ads removed? Please voice your displeasure with the ads and your support for Seattle’s autistic community by commenting on the Facebook page of Seattle Children’s Hospital (linked here), and watch for an upcoming Change.org petition, sometime in the next few days.
Autism is a lifelong disability for us to adapt to, not a medical infection to be overcome with some kind of “cure.” Please remember this when creating ads that refer to autism, or when speaking publicly about autism. It is not okay to talk about autism as a purely negative thing to be eliminated or wiped out. Remember, when you talk about autism, you’re not talking about a faceless, mindless disease, you’re talking about autistic people. Respect that fact. Respect our community. Respect us as people.
Back in March, we held vigils across the country for people with disabilities who have been killed by their parents and caregivers. This happens far, far too often. And now we’ve lost another one.
I should have posted a transcript of our vigil when I posted the video footage, but was too drained at the time to do so. But here’s the meat of it, of our community’s reaction to these continuing deaths:
"We are saddened. Saddened by the senselessness of these deaths, and saddened by the loss of these lives, these people, and all that they could have brought to our communities, just by being the people they were. Saddened by the loss of the opportunity to get to know these people, our brothers and sisters. Saddened that, thanks to the nature of media coverage, we know more about their deaths than about their lives. Saddened that we don’t have more to say about them as individuals today, and that we’re reduced to speaking out about the injustices around their tragic deaths.
"We are hurt. Hurt by the conversations we see and hear, over and over again, that revolve around expressing sympathy for those who have killed people like us. Hurt by the way these acts of murder are portrayed as understandable, justifiable, in light of the challenges of caring for someone with a disability. Hurt by the implicit assumptions that these lives had little value, and were unlikely to have contributed meaningfully to society. Hurt by what this says about the value society places on our own lives and contributions. Hurt by the ways that society so clearly sees us as less than whole people.
"We are angry. Angry that people are so quick to make excuses for those who murder people like us. Angry about the way that these excuses perpetuate the social narrative that our lives have less value, that our very existence is an intolerable burden to those close to us, and that extreme violence against us is therefore justified. Angry at the way that this narrative leads to countless abuses and acts of aggression against us, small and large, every single day as we make our way through this world. Angry at the way that those who murder our brothers and sisters so often — not always, but often — receive greatly reduced sentences as a direct result of this poisonous cultural narrative. Angry that the criminal justice system so often seems to agree that murdering one of us is justified.
"We are afraid. Afraid of what this means for our own physical safety, and that of others like us. Afraid that the excuses made for these murderers will lead other beleaguered caregivers to believe that if the stress of their duties becomes too much for them, society will forgive them for killing those under their care. Afraid that they will be right to believe this. Afraid that we will be attacked or killed just for being the people we are. Afraid that people will think that’s okay.
"We are determined. Determined to do everything we can to protect those of us who are still here. Determined to change the way people talk about our lives and about our deaths. Determined to change the way people think about the value of our lives. Determined to do everything we can to prevent as many future murders as possible. Determined to make it unacceptable to discuss our deaths as understandable or justifiable by reason of our disabilities. Determined that this time, for once, it’s OUR turn to make the rules about what is or is not socially acceptable."
I’m glad I did the work of putting all that into words a couple of months ago, because there’s no way I’d be capable of being that articulate about all of this right now, in the middle of all the emotion surrounding yet another senseless death.
But here’s the bottom line. We MUST make changes in the way these deaths are talked about. We must do all we can to make it ENTIRELY SOCIALLY UNACCEPTABLE to react to news of such deaths with expressions of sympathy for the plight of the murderers. We must call out such rhetoric as not only profoundly insulting to the memory of the deceased, and threatening to those of us with disabilities… we must drive the point home that expressing sympathy for these murderers DIRECTLY ENDANGERS THE LIVES of other potential targets for such killings, by fostering a culture that condones such killings. ABSOLUTELY NOT OKAY. We need to call people out on this, and spread the word that this is not a sort of rhetoric we can accept in our communities. We need to identify such rhetoric as the hate speech that it is.
And to those tempted to lay blame at the feet of autistic victims that sometimes express violent reactions to their distressing environments, I leave you with this classic article from Amanda Baggs. Maybe, if we had managed to listen to and understand what Alex Spourdalakis was trying to tell us with his behavior, this tragedy could have been averted.
The things we’re willing to accept, and the things we refuse to accept, reveal a lot about who we are, as individuals and as a culture.
From a young age, our society strives to indoctrinate us to refuse to accept anything less than perfection and success from ourselves. We are taught to reject any hint of failure, to turn up our noses at the faintest whiff of aberrance or deviance from the socially mandated yardstick of that which is “normal.” Inabilities or disabilities are often dismissed as we are told to simply “try harder”, exhorted not to “give up” and instructed to “accept nothing less than success.”
But not all bodies and minds are created equal, and many of us find ourselves carelessly cast out into a world that has been designed for bodies and minds that are very different from our own. Building a healthy and satisfying life for ourselves in such a world is often an insurmountable task, as we find ourselves confronted by innumerable barriers to access at every turn. Without supports and accommodations to compensate for the disadvantage of living in a world that wasn’t designed for people like us, many of us simply find ourselves adrift, subsisting as best we can on whatever resources we can manage to scrounge up for ourselves.
Meanwhile, society continues to inundate us with the message that our failure to achieve security and stability for ourselves is our own fault, and furthermore that our failure is unacceptable. We are conditioned to refuse to accept our shortcomings, and in the end, we are conditioned to refuse to accept ourselves. We are taught to loathe our differences in ability, taught to blame these natural differences for our failures, rather than holding society accountable for its failure to accommodate a more diverse range of bodies and minds. Trapped in this destructive paradigm, we finish the job society started, cycling through endless loops of shame and self-rejection.
In the specific case of autism, this dynamic is played out in a particularly blatant fashion. For years, the dominant narrative about autism has been anything but accepting. Awareness campaigns funded by alarmist organizations have characterized autism as a mysterious, invisible thief that steals the souls of innocent children, leaving them empty, emotionally disconnected husks. Panicked parents have been conditioned by this fear-mongering to treat autism as the enemy, and to seek out ways to destroy this insidious force that has somehow stolen away the perfect, able-bodied, able-minded children they were “supposed” to have, and replaced them with these pitiable, tragic figures.
The damage that this rhetoric does to the autistic population is, quite frankly, unacceptable. Which is why we are rebranding April, long claimed by the fear-mongers as “Autism Awareness Month” to spread their destructive campaign of awareness of autism as “the enemy.” We refuse to accept this brand of awareness, and have recast April as “Autism Acceptance Month”, a time to celebrate the unique, complex, sublime individuals that we are, to accept our strengths and our challenges, our struggles and our triumphs.
It’s time to accept that autism is here, and it’s not going away. To accept that autistics are here, and we’re not going away. It’s time to accept that autism is a natural part of the diversity of human existence, and that society has a long-neglected responsibility to provide this segment of our population with access to opportunities to succeed, to thrive, to find happiness and fulfillment, safety and security. It’s time to accept autistic mannerisms such as flapping, rocking, walking on tiptoe, and other forms of harmless stimming as the natural self-expressions of autistic bodies, and it’s time to accept our right to express ourselves in these ways, publicly.
It’s time to accept that autism is a broad, complex condition that presents in myriad ways, with endless combinations of strengths and challenges, talents and impairments. It’s time to recognize that all of these diverse combinations are equally valid forms of autism, and that each of us on this vast spectrum is equally autistic, no matter how different from each other we may appear to a given observer at a given moment of our lives. It’s time to accept that our autism is an inextricable part of us, a fundamental part of how we receive and process information, rather than simply a set of unacceptable behaviors to be corrected. It’s time to accept our right to be autistic, to be ourselves, to accept ourselves as we are.
It’s time to accept that each of us develops at our own pace, and in our own way. It’s time to accept that some of us will never develop speech, and some of us will speak when we’re good and ready. It’s time to accept that some of us will communicate through typing, or signing, or never use language at all, and to accept that any of these alternatives is okay. It’s time to accept that some of us may never be able to tolerate the social and sensory overwhelm of large crowds, and to accept that it’s okay for us to keep to ourselves if that’s what brings us peace and security. It’s time to accept that some of us may thrive in an employment setting while others of us may never achieve stable financial independence, and to accept that you might not be able to predict which is which from your external observations of us. It’s time to provide us with guarantees of the supports we will need to live safe, happy lives, whichever of these abilities we do or don’t develop.
It’s time to accept autistics as respected members of our communities. It’s time to accept that autistics are suffering from exclusion and deprivation every day as a result of living in a society that was not designed to include us. It’s time to accept responsibility for changing this situation, and it’s time to accept that the solution is to change our society, not to change autistics. It’s time to accept that this change won’t be easy or quick, and it’s time to accept that in the meantime, the autistic people we love will need that much more respect, support, and accommodation, while we work to create a society where we all have the opportunity to participate equally. It’s time to step up, and take care of each other, because the status quo is unacceptable.
It’s time to work toward true Autism Acceptance, every day, because the alternative is to continue to accept a world where 2% of the population is relegated to the margins of society. Is that really a state of affairs that you’re willing to accept?
"Should" is such a loaded word. It carries with it the very essence of invasive moralization and judgment. People use this word to tell each other how to act, how to think, how to feel, how to be. It’s a tool for oppression and disempowerment that is built into the English language on a fundamental level. I wish our culture wasn’t so prone to tossing it around so very carelessly. Violently, even.
The troubling nature of this word becomes particularly evident when it’s typed into a Google search box. It’s recently come to light that when the partial phrase “Autistic people should” is entered in Google’s search tool, their autocomplete feature offers some suggestions for finishing that sentence that unquestionably qualify as hate speech of the worst order.
In response to this abhorrent state of affairs, autistic people are organizing all across the Internet today to offer some more healthy search suggestions and search results on the partial phrase “Autistic people should”. And as a card-carrying autistic self-advocate, I’m doing my part, as I should, and adding my voice to the crowd.
Autistic people should be free to live their lives. Autistic people should be free from the fear that their inborn, natural, neurological differences will lead to sytematic neglect, or abuse, or outright murder. Autistic people should receive the support they need to live their lives, to prosper, to thrive. Autistic people should be given opportunities to succeed at the endeavors that bring them joy.
Autistic people should determine their own futures. Autistic people should determine their own values, their own moral compass of right and wrong, free from the oppressive weight of what other people declare that autistic people should do. Autistic people should speak out against injustice and mistreatment. Autistic people should contribute their voices, their unique sensibilities, to the moral fabric of our shared culture. Autistic people should be heard, and autistic people should be listened to.
Autistic people should trust their own instincts and judgment as to what is healthy for them, what will help or hinder their ability to function in the world. Autistic people should follow their hearts, follow their bliss. Autistic people should trust their own judgments, their own minds, their own feelings, their own knowledge of themselves. Because, above all else: Autistic people should be true to themselves.
And while we’re at it, we should all head over to google.com today, and type “autistic people should” into their search box, and continue typing so as to finish that sentence with something far more empowering and positive and life-affirming than the horrid suggestions that their autocomplete feature follows up. We should do this repeatedly, running searches on as many positive variations on that sentence fragment as we can think of. We can use variations on the suggestions offered above, or draw inspiration from any of the other numerous autistic advocate blogs that are being published today. We should use our knack for perseveration to our advantage, and see if we can turn this thing around.
We should show Google, and the Internet, and the world, that we “give a should” about how we’re talked about, how we’re viewed, and how we’re treated.
I peel back the layers that soften and cushion, the layers that protect us both from seeing and feeling too much of me as I venture out among you, seeking connection, belonging, understanding.
The raw intensity of my unadorned presence in the world is something I’ve been conditioned to mask, to conceal, to cloak for your comfort and for mine.
In my natural state, I feel too deeply, focus too intently, speak too directly to be comfortably integrated into the patterns and customs of conventional social behavior, the practices that allow us to navigate our communities in a predictable fashion, reducing the actions of those around us into simplified, safe routines with superficial explanations that allow us to go about our business without having to think too deeply about the overwhelming, messy complexity of everything we do, and everyone we meet.
I’ve tried to respect your need for me to drape myself in the trappings of conventional society, I really have. I try to squeeze into my costume, and remember my lines, and watch for my cues. But the costume doesn’t fit, and eventually it chafes too much, and I squirm, and I falter, and the raw intensity that I tried to protect us both from emerges nonetheless, and my discomfort becomes uncomfortable for us all. It’s just not sustainable, and it’s not me.
Ultimately, the habit of wrapping myself in these socially softening behaviors and perspectives and ideas hides my true raw nature from even my own awareness, and I find myself unable to adequately connect with my own thoughts, feelings, and sensory experiences. And that is a price I’m no longer prepared to pay.
If I wear a disguise as I walk through this world, seeking connection, belonging, and understanding, then even if I “succeed”, the person who “connects” isn’t actually me. The person who “belongs” isn’t actually me. The person who is “understood” doesn’t actually exist.
So I peel back the layers, and through the raw terror of the social risk that I take in doing so, I remind myself that ultimately, I’m not responsible for the comfort of those around me. Despite conventional language structure, we don’t actually “make” each other uncomfortable, or comfortable, or angry or sad or happy or anything else. We each do what we do, and we each feel how we feel about our own actions and choices and those of others around us, and those feelings are our feelings, not caused by anyone else.
I choose to expose my raw, intense experience of my life to the open air. I choose vulnerability. And exposed to my core, I realize, all the obstacles to true connection, true belonging, true understanding, true intimacy, begin to evaporate, as my experience of the world is allowed to penetrate to my very foundation, allowing me to change, and grow, and truly affect and be affected by the world.
Now it becomes real. Now it resonates, now it all thrums with the vibrancy of a life unfiltered, uncompromising. Now my life and my experiences and my choices can sink all the way in, and change me, and change the world around me, and leave us all the better for it. Now I can live my life, and be my true self, exposed, vulnerable, strong and safe and standing tall.
No more shame, no more hiding. It’s time to bare my true self to the world, and let myself be seen, and find a way to connect, and belong, and be understood, as the person I truly am.
It’s good to be home.
2012 was quite an eventful year from me. For a few years prior, I’d been living as a shut-in, deliberately isolating myself from almost all social interactions, whether face-to-face or online, to give myself time to recover from past traumas. But as the year began, I’d finally gotten in enough downtime to have recovered the will and the life energy to start emerging from my cocoon. I started 2012 off having reached out for mental health services to assist me in transitioning back to a more active (and interactive) lifestyle.
A couple months in, my psyche and my neurochemistry were stable enough for me to start taking some more social risks. I worked up the nerve to plug back in to social media, joining Facebook and Twitter. Before long, I’d reconnected with a friend from LiveJournal who was now very active in the Autistic Self Advocacy Network, and by mid-year, I was participating in protests, circulating online petitions, and doing what I could to leverage my online presence to help shape the public conversation about autism. I became very active with ASAN myself, and drew strength from an empowering sense of contributing to society in a meaningful and positve fashion.
I was working through my inhibitions, opening up and putting myself on public display, in order to exhibit the joys, challenges, and curiosities of my life as an autistic, for personal and community benefit.
As a consequence of this newfound social confidence and aptititude, I found myself experiencing a surge of hunger for deeper, more intimate relationships. During my self-imposed convalescence, my love life had been fairly low-key, and my explorations of my polyamory had been limited to me being one among multiple intimate relationships in another’s life, rather than me having multiple intimate relationships in my own life. This had worked out well for me at the time, since the modest demands on my time and energy as a secondary partner to someone else matched up well with the limited emotional resources that I had to offer.
But with my newfound social energy and evident need for intimacy, it was time to start finding more outlets. About five months after joining Facebook and exploring online social interactions and large-scale community involvement, I joined the Center for Sex-Positive Culture, a community center and event venue for the Seattle poly and kink communities, and there, I began exploring face-to-face social interactions, and smaller-scale community involvement. I began plugging in to an existing on-the-ground community of open-minded people who valued skilled communication practices as a social standard, and there I slowly started cultivating opportunities to meet my needs for healthy social interdependence, and emotional and physical intimacy.
In this environment, I began taking my exploration of openness in self-expression to a whole new level, displaying various aspects of myself to my community in bolder and more exciting ways, and began truly owning my identity as a multi-leveled, whole-person exhibitionist, plowing through my inhibitions at an exponentially increasing rate.
But as exciting and freeing as all this was, I ended up crafting a new set of inhibitions for myself. I began to distance myself from my online social presence, falling out of the habit of tweeting, and reducing my Facebook activity to little more than passing along links to articles I found socially relevant to my community. My new explorations consumed most of the social energy that I had been using to meaningfully connect with people online, and what energy I had left for online activity was entirely consumed by my steadily increasing responsibilities with ASAN.
Because I felt substantially inhibited about sharing my latest explorations with the online audience I’d recently built up, I found my need for openness to be thwarted in the wider public sphere, even as I energetically pursued the development of my exhibitionist side in my local community. I could tolerate this schism only because I assured myself that it would be temporary, and that when the time was right, I would find an appropriate way to integrate these diverging channels of self-expression, presenting a more unified, consistent, and complete view of myself to all those within my social reach, through whatever channel.
As a whole-person exhibitionist, I need this level of radical public openness on a very deep level that may be difficult for most people to relate to. During my time at CSPC, I’ve had the opportunity to observe countless varieties of personal kink on display. Some are simple, some are highly intricate, but upon close enough inspection, each individual’s kink is deeply personal, and expressed by each practitioner in a uniquely idiosyncratic way. Each seems to be an expression of a deep, powerful need that is difficult or perhaps impossible to find adequate support for in mainstream society. By practicing their kink, the individual is granted the opportunity to address these profound and unusual needs in a deeply fulfilling way, and by doing so within the framework of a supportive community, there is the added benefit of receiving implicit or explicit social validation for a type of need that would typically arouse social scorn. Whether a particular person’s kink generates excitement for me or leaves me feeling squicked out, I recognize and respect their need to pursue that kink in order to be truly able to be themselves in this world.
Well, here’s my kink: I need to be on display. I need to be seen. I need to experience other people’s attention on me, and receive their reactions to me. I need to draw strength from the validation of those who look upon my exhibitionism with acceptance. I need to display steadfast strength when faced by invalidation or rejection of my self-expression. I need to be a conversation piece. I need to be an interactive exhibit, arousing interest, raising provocative questions, generating discussion, and actively participating in that discussion. I need to develop and refine my ability to express my whole self to others in a variety of media and styles, and use my acts of self-expression to contribute to and enrich society in ways that I consider to be positive, and cultivate and exert personal influence on our community’s path of positive social development and growth.
Lofty goals. I’ll need lots of practice, and I’m definitely still quite clumsy at it, so far. But it’s who I am, and it’s how I can successfully exist in the world, and it’s what I need to do. To exhibit myself as a whole person on a multitude of levels, and via a multitude of channels. To bring my whole self to the table, nakedly on display, in all my social interactions. Granted, it’s important to be aware of the tolerances of my audience in a given moment or through a given medium, because it can be all too easy to push a given observer or set of observers into a reaction of distaste so powerful that I can’t effectively communicate my message. But that’s where continued practice and development of my skills come in. Over time, I have faith that I will learn to be effective and artful in expressing my message, because really, I don’t have any other choice available to me. This is who I need to be, and how I need to do things.
So, it may take a while for me to build up the confidence and skill to be able to share my whole self in an artful and appropriate way through all my social channels. My need to be effective in conveying my message can justify taking it a bit slow when I have to, and allowing for some delay while I refine my art of self-expression. I can allow myself to go slow enough to respect my own limits and capacities, mainly because I can see that if I break myself too badly in my explorations, I’ll reduce my effectiveness. So I’ll go at whatever pace feels natural and right, and share the parts of myself that I can through a given channel when I feel genuinely ready to do so.
But I certainly wasn’t going to kick off this new year without publicly declaring where I’m at, where I’ve been, and where I’m going. My self-expression has become far too fragmented between the different parts of my life for me to be able to continue tolerating this state of affairs any longer, and I need to at least begin the process of integrating these parts of my life, in order to truly be my whole self, wherever I go. As a mission statement, this seems like a decent start.
So grab some popcorn, sit back, and get ready to enjoy the show. 2013 has the potential to be quite the adventure! Thanks for watching, and thanks for caring.
Just because I have autism, doesn’t mean that I’m just an autistic.
Just because I need help functioning in the world, doesn’t mean I’m just a burden to others.
Just because I’m trying to change the world, doesn’t mean I’m just a radical idealist.
Just because I get a charge out of being the center of attention, doesn’t mean that I’m just an attention whore.
Just because I want my abilities and accomplishments to be valued and recognized, doesn’t mean that I’m just a glory-hound.
Just because I crave affection and fall in love freely and easily, doesn’t mean I’m just a desperate shmuck.
Just because I’m interested in getting laid again at some point, preferably frequently and with a variety of women, doesn’t mean that I’m just a horndog.
I mean, sure, I am all of these things, but I’m not just these things. I’m an autistic and a burden to others and a radical idealist and an attention whore and a glory-hound and a desperate shmuck and a horndog. But I’m a bunch of other stuff too. I’m a good friend and a good brother and a good son and a good lover and a good citizen and a good person, and I have plenty to offer, to plenty of people.
Just because there are parts of me that might happen to seem distasteful or disagreeable, doesn’t mean that my entire existence can be reduced to those aspects of me that might trigger such discomfort. Doing so might make it easier to avoid having one’s viewpoints challenged, by dismissing me as someone whose nature or views or behaviors are just deviant and unworthy of valid consideration. Such dismissal, however, is an instance of the reductive fallacy, and inaccurately characterizes matters of genuine multifaceted complexity, in a way that is deeply unjust.
Just try to look a little deeper at the people and behaviors that trigger you, before judging and dismissing someone as unworthy of consideration or respect. You just might find that your life will be the better for it.
I’ve got a lot going on these days. On a personal level, I have immediate survival-level crises that I must resolve as soon as possible, so that I can have secure affordable housing in which I’m capable of functioning on a daily basis. Because many of my basic daily self-care skills are profoundly impaired by my autism, I need a lot of help to take care of my basic needs. But because my ability to maintain social relationships has also been impaired, and because I appear to the casual observer to be capable of functioning at a higher level than I actually can, I’ve never successfully called on as much help as I truly need.
I have thus lived in a continuous state of low- to high-level crisis for most of my life. Adequate community care for people with my condition has not yet been developed in this society, and I have not been able to cultivate a personal community that is attuned to and capable of providing for my idiosyncratic needs. Having that kind of access to community care, inherently set up to facilitate meeting your daily needs, is something the privileged, “able-bodied/minded” majority take for granted. Our society does not yet provide people like me with the same access to basic essential resources and community participation that it provides for the majority of people. So I have to independently create a customized and robust social support network for myself, which is not an easy task, especially for someone with social challenges.
But I’m working on it. Over the last few months, I’ve been working on integrating into a new social circle from the local neurodiversity community. A core of us have come together to advocate for our needs in the community and for autistic and disability rights in general, forming the new Washington State chapter of the Autistic Self-Advocacy Network in the process. And this process has also led to forming a wonderful group of dear new friends, who have frames of reference from which we can understand one another’s challenges, gifts, struggles, strengths and value. It’s been a magical feeling, as this community of like-minded people in which I feel like a true equal has started to coalesce. And I’m deeply grateful for the social comfort that this group of friends provides.
And yet, this is a community of people who share common difficulties with functioning in mainstream society. So while it provides me with a sense of community and purpose, this social circle isn’t well equipped to functionally compensate for the lack of resources and assistance we need in our daily lives. For that, I need to be part of a community that has more access to those kinds of resources, and has a cultural tradition of openness to sharing these resources among its members.
Thankfully, the autistic community isn’t the only subculture to which I have inroads. I’ve also identified as polyamorous, for just as long as I’ve known about my autism. Dealing with my disability and my needs as an autistic has required the bulk of my time and energy over the last seven years, with little left over to actively explore polyamory. But after being in a state of prolonged extreme isolation for the last couple of years in order to regain my health, I’ve both recovered sufficient energy to take a swing at it, and developed a profound craving for basic human contact.
A month ago, the urgency of expanding my social circle into the local polyamory community became evident. I realized that I had developed a pattern of spontaneous romantic crushes on people who I was still just getting to know, and that these intense feelings jeopardized the integrity of my fragile local social network, which was still in its infancy. I needed an outlet for this surplus social and emotional energy, a safe place where I could explore this side of myself in an atmosphere of acceptance.
Fortunately, I live in Seattle. When I first moved up here, I was introduced to the Center for Sex-Postive Culture by a sweetie of mine, and now I have the energy to explore this vibrant, active community center where there are opportunities to meet people in the polyamory community (as well as a host of kink-centric subcultures). For the past month, I’ve been actively attending events there, expanding my social circle. It’s been a splendid social outlet for me, and helped me break the rest of the way out of the isolated state in which I’d been keeping myself for so long.
Now, with the addition of these new connections to my existing social circle, I have the beginnings of a support network that maybe, just maybe, could be robust enough and supportive enough to help me meet my basic human needs. My needs are unusual, difficult for others to understand and identify, and chronically undernourished, which has kept me in a continual crisis state for the vast majority of my life. But now, it actually seems possible for me to finally become a truly functional and cared-for member of my community.
My current most urgent need is housing. My rent costs nearly 70% of my monthly income from Social Security Disability, and now that rent is being raised. It was (barely) sustainable for me when I was subsisting in a dormant, convalescent state for the past couple of years, but now that I’m active again, my expenses are greater, and my cognitive resources to functionally manage my finances (one of many extremely difficult tasks for me personally as an autistic) have decreased. Yesterday, I gave my 30-day notice to move out of my current studio apartment. I don’t have a new place lined up yet. But I’m in a situation where I have no other choice. I have to take a leap of faith, hoping I have access to the community resources needed to find a safe place for me to land.
This is all huge, transformational, life-changing stuff. And yet I’m only one of a great many people with disabilities whose access to housing and other basic human needs are only marginally supported, at best, by society. Granted, the broader social situation has been improving for a while, thanks to the Olmstead decision. That Supreme Court ruling back in 1999 required that states provide adequate access to integrated community housing, for those whose needs would be better served in that environment than in an institution. Thanks to that ruling, states have been transitioning massive numbers of unnecessarily institutionalized individuals into healthier community settings, greatly increasing their participation in society.
But now, all that progress is in jeopardy.
Due to state budget cuts to Medicaid, state resources for providing community housing facilities have been reduced, and large numbers of people are now in danger of losing their access to those facilities, if they haven’t already. These people may be forced into medically unnecessary institutionalization. The disability community sued the state for violating the Olmstead decision, and won. But now Gov. Gregoire is considering appealing that decision to the Supreme Court, which would open the possibility of the Olmstead decision being reversed on a national level, turning the clock back on over a decade of substantial progress for our nation’s disability community.
This week, my recently developed local social circle of neurodiverse individuals, the fledgling Washington state chapter of ASAN, is taking point on a massive statewide effort by the disability community to call for Gov. Gregoire to settle this court case and refrain from appealing to the Supreme Court. More details on this budding campaign will be revealed soon, but the upshot is that right now, my community needs me. Sure, my current personal crisis is dramatic and urgent and overwhelming, but part of being a member of a community is looking past all the struggles of my own personal life to do my part to help make sure that society as a whole can provide adequate care for those in need. If I want to build a community in which my basic needs and the needs of people like me can be adequately cared for, then it’s my personal duty to advocate for ensuring access to that kind of necessary community care and housing for everyone.
I’m being called upon by my peers to pitch in, and I’m answering that call. I can devote a week to fighting against the displacement of people with disabilities, fighting for their inclusion in society. Relegating disabled people to institutions where they are isolated and inadequately cared for is a lose-lose situation for everyone in our society. I’ll have the whole rest of the month to find a place to hang my hat. This advocacy effort is more important than my personal situation.
And so I’m calling on you, dear readers, to lift your heads and take a time out from your own personal situations and dramas like I’m doing… not to help me with my own personal crisis, but to help me raise awareness for the potential crisis that Gov. Gregoire is about to create for thousands of others. What I need from you is to pay attention to this situation, to talk about it, and help me generate public discussion about why it’s not okay to unnecessarily institutionalize countless individuals with disabilities, just to cut corners on expenses. This is not an acceptable corner to cut. Everyone needs access to adequate housing and community care, just like I do. Please, help me spread the word about this, and help me drive this discussion toward something that can resonate for society as a whole and compel people to act. I’m doing my best to help out, but I can’t do this alone.
Are you with me?