November 1, 2017

Autistics Speaking Day 2017: What I would say to autistic people who want a cure

Posted in Uncategorized tagged , , , , at 2:12 am by chavisory

 

ASDay 2017

Autistics Speaking Day was founded several years ago in response to a particularly ill-conceived charity campaign, as a way of resisting the narrative that we are or should be silent or non-communicative. We’ve utilized it, largely, to talk and write about the truths of our lives and refute common misconceptions to a largely non-autistic audience.

It has been less focused on autistic people speaking to each other. That’s what I’m hoping to do today.

Recently I was asked, in the context of a broader conversation on Twitter about the foundational principles of neurodiversity, what I would say to autistic people who do want a cure or support the development of a cure for autism. This post is adapted from that discussion. I’m not sure it’s what the person who asked me expected, and I’m not sure how many people who fit that description might ever read this, but, well, this is what I would say.

1.  You have a right to your feelings. I’m not going to tell you that you shouldn’t think or feel this way. I’m not going to tell you that you only want this because of “internalized ableism.” I’ve never found attempts to argue other people out of their own feelings very effective, and I really hate it when other people try to tell me what I feel and why.

You have a right to feel the way you do about your own life. I’m sorry if you’ve encountered autistic communities where it was suggested that that wasn’t true.

I think too many of us spend our lives being told that by too many other people. It’s not right, and I’m not going to do it.

2.  However, your feelings and wishes are no more real and genuine, or more authentic an experience of autism, than mine are. I’m not sugarcoating the experience of autism when I talk about why I oppose cure-based research and favor acceptance; I’m telling the truth about conclusions I’ve come to from my own experiences as well as a lot of listening to other people from all sides of this debate. And it would be a mistake to assume that those experiences were easy or mild just because I have not come to the same conclusions that you have. Chimamanda Ngozi Adichie discusses “the danger of the single story” when the single story is a stereotype imposed from outside a culture or marginalized group. But I think one of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

Neurodiversity advocates get told a lot that we “don’t speak for all autistic people.” That’s true.

Neither do you.

3.  I actually think you should have a right to access any treatment or therapy (within certain standards of demonstrated safety and effectiveness that any drug or medical device is required, for good reasons, to meet in this country) that you and your health care providers think might make your life better or more comfortable. Like all of us should.

People who oppose or who do not personally desire a cure are not just the people who have everything easy, who have no real problems. We want our medical issues and other challenges taken seriously.

We just think they’re a poor excuse for why people like us shouldn’t exist at all.

4.  But a true cure for autism (that doesn’t consist of eugenic abortion based on genetic profile) is not only something that we are nowhere even remotely close to achieving, but seems, to me at least, increasingly unlikely to be achievable in light of current research. Autism isn’t something located in one part of the brain. In the vast majority of cases, it’s not attributable to a single gene or even to a small number of genes, or to any discernible damage or definite pathology, but involves differences in how the brain matures over time and processes information in complex and subtle ways.

Serious attempts at a cure, to date, have tended to be ethical and human rights catastrophes.

5.  I don’t say that to make you hopeless. I say it to strongly suggest that you not wait for a very hypothetical future in which you might be able to turn yourself non-autistic in order to try to be happier. To find the things that make you happy or satisfied and follow those things wherever they lead. Because if you’ve put all of your hopes for joy or contentment with your life in the basket of a potential cure, then you’ve already made your decision in a way that is very unlikely to have the resolution you want.

6.  In any way and to any degree that you can, get out of bad or incompatible environments. They can really easily make you feel like the problem when you’re not.

When you have, for a really long time, been surrounded by people who make everything about you into a problem, or only ever been in environments that sent the message that everything you want but can’t have is because of autism, then it can be very, very difficult to tell the difference between artificial, arbitrary barriers, and obstacles actually imposed by autism itself. And those messages, those arbitrary, imposed barriers, are very, very prevalent in our society and in a lot of the ways that our families, teachers, healthcare professionals, potential employers, and other people who have a lot of power in our lives, are taught to see and treat autistic people.

Those things aren’t just natural, inevitable consequences of being autistic, and learning how to recognize and challenge them might not make you change your mind, but life can be a lot more livable.

7.  There are ways in which I think the neurodiversity community could do a lot better for all of us.

I think we need to have more room for people who don’t necessarily feel prideful or self-accepting, who feel ambivalently, who are still coming to terms with difficult or ambivalent personal histories.

I think we need more room for people to admit to struggling, both with acceptance and with the pragmatic realities of being autistic.

I think we need to remember that neurodiversity is about the conviction that autistic and other neurodivergent people are truly and wholly human, with everything that that entails, that our existence is natural and innate to human biodiversity, and that it would be wrong to try to eliminate autism and autistic traits from the fabric of humanity; and not about feeling 100% positive about our lives or identities at every given moment.

That’s not something that’s expected of typically-developing, non-disabled humans in order to justify their continued existence.

I also think there are compromises we rightfully will not make. That the neurodiversity movement for the most part does not engage or condone “Well, I don’t need a cure and people like you might not need a cure, but low-functioning people do” rhetoric is not because we don’t understand how disabling autism can be. Indeed, some of the pioneers of the neurodiversity movement were and are very significantly disabled people. It’s because we believe that autistic people are real and whole people, no matter the intensity of their disabilities or their support needs, and that all of us have a right to our own thoughts and feelings and decisions about our lives. That if we’re serious about honoring diversity, we don’t get to say “We’re okay and intrinsically valuable the way we are, but people like you aren’t.”

There are a lot of things we could do better to find common ground with autistic people whose goals and desires differ from our own. That we won’t do that isn’t one of them.

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October 24, 2017

Inside and outside

Posted in Uncategorized tagged , at 10:54 am by chavisory

IMG_2594
Greenhouse at Wave Hill, Riverdale, NY.

October 5, 2017

Invisible history

Posted in Uncategorized tagged , , , , , , , at 2:00 pm by chavisory

I started watching Westworld last week. In a scene in the first episode, one of the android characters, a “host” in the immersive Wild West-themed amusement park, has found a photograph in his field, discarded by a guest, depicting a woman in modern clothing standing in Times Square at night. Disturbed and confused, he shows it to his daughter, Dolores, but she’s not similarly affected (at least, not yet).

Lacking any possible context or way to make sense of what she sees, she can only say over and over again, “It doesn’t look like anything to me.”

She can’t process the possible existence of a whole reality that she has no framework at all in which to understand.

 

With the premieres recently of both Atypical and The Good Doctor, I was having a conversation about fictional representation of autistic characters–what we wish we saw more of, what we find intolerable.

And one of the things I have managed to put my finger on that unsettles me consistently, that leaves me unable to connect with a lot of the portrayals I see, is the tendency for autistic adults or near-adults to be portrayed as baffled, bumbling, almost complete naïfs about the non-autistic social world and its expectations and the realities of how things work.

As if, at the age of 18 or even older, they walked out their front door and encountered an overwhelming and often hostile world for the first time yesterday.

When, in reality, and unless we have been terribly, inappropriately isolated or sheltered (though often even then, often especially then), we’re actually well-acquainted with the fact of a world that doesn’t work terribly well for us, and we’ve been navigating it for a long time.

We aren’t dropped into our world for the first time in the opening teaser of a television episode.

A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are.

So, for instance, by the time we’re adults, we have made a lot of social mistakes and had to deal with the fallout.

We’ve often had to be responsible for ourselves in ways that other people our age haven’t, because adults haven’t been reliable sources of support. We’ve had to teach ourselves things that everyone else seems to just know.

We’ve had to be careful in ways that other people don’t and problem-solve for ourselves in ways most people haven’t.

We have to know things that most people don’t about navigating the non-autistic world. And we know more about what we don’t know than most people even realize there is to know.

We have to anticipate being mistreated or misunderstood almost constantly.

We have dealt with a lot of abuse, ostracism, isolation, loneliness, being disbelieved about our experiences and perceptions, and violation of our autonomy.

We’ve had to work harder to not just fall through the cracks of the world. We’ve also experienced uniquely intense beauty and joy, as well as many of the common experiences and challenges of growing up that most adolescents and young adults experience.

All of those things have impacts, besides that people learn and grow and are affected by their histories as they age. People become competent at dealing with the circumstances of their own lives.

 

And without that grounding in personal history, you’re left trying to construct a character’s personality around a diagnostic checklist, and you wind up with characters who are basically walking autism in some kind of imaginary pure state—without patterns of experience, without memory, resilience, or emotional connective tissue—who therefore have the social navigation skills of 6-year-olds no matter how long they’ve supposedly actually lived on this earth.

 

The more I thought about it, the more I started to suspect that this is actually what people are talking about when they say things like “But you don’t seem autistic.”

It’s not just that we don’t behave like children or that we don’t have the same “kind” of autism as a character they’re familiar with or don’t seem to occupy the same place on the spectrum as their own or someone else’s child.

It’s that the autistic characters they are used to seeing have no depth of experience.

They are people without history.

A growing number of people know children diagnosed with autism. But autistic adults are still overwhelmingly likely to be undiagnosed, or closeted, or both—if they’re not isolated from their communities in group homes or institutions or segregated workplaces, and many still are. So many people don’t really know autistic adults, or at least don’t know that they do. Their knowledge base of autistic people is still being drawn from children, or from fictional representations based on clinical knowledge of children.

And that leaves the reality of our life experiences, both positive and negative, and their impact kind of invisible. So if autistic people change or grow as people, or pick up skills we weren’t expected to, it must be because we overcame or outgrew autism, or “must be very high-functioning” in the first place…and not because we are capable of learning from our own experiences and the demands of our environment.

I speculated once (apparently in a comment now lost to the depths of the internet, sorry) that the myth of autism as developmental stagnation or eternal childhood, and a lot of “not like my child” rhetoric directed at autistic adults, stems largely from this inscrutability of what the passage from childhood to adulthood looks like for autistic people.

“They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them,” writes Rabbi Ruti Regan.

Most people just don’t have a framework of knowledge about the substance of our lived experience.

So it doesn’t look like anything.

 

A lot of the time, when autistic people complain that autistic characters are unrealistic, it’s presumed to be an issue of a character not representing the traits or experiences of a certain faction of the autistic community, and we get responses like “But one character can never represent all autistic people.”

But that isn’t the problem. It’s not that they’re not exactly like ourselves; it’s that they have no depth or complexity because they have no lived experience, because their creators didn’t know how to give them one.

Well-meaning non-autistic people frequently protest that “You aren’t only autism!” but it usually isn’t we who seem to think that we are only autism and not an intricate amalgam of our innate character traits, our strengths and weaknesses, our personal histories, our thoughts and desires and fears and embodied experiences of the world.

And yes, autism pervades all of that. But it doesn’t comprise our personalities in a vacuum.

Just because we’re new to many non-autistic people’s conception of the world, doesn’t mean we’re actually new to the world. We have histories, and we are affected, like all people, by those histories.

September 29, 2017

From summer

Posted in Uncategorized tagged , at 1:01 am by chavisory

IMG_2531From the Walkway Over the Hudson in Poughkeepsie, NY, end of the summer.

September 12, 2017

Disappointment

Posted in Uncategorized tagged , , , , at 9:37 pm by chavisory

A friend of mine not long ago strongly recommended the television show True Detective to me (and I’d acquired HBONow recently for purposes of playing Game of Thrones catch-up), and that is how I came to be watching it one evening last week, as it happened, right when I learned from Twitter that Matthew McConaughey had partnered with Autism Speaks and Kiehl’s on a new autism awareness campaign.

It was an especially bitter moment of irony, but sadly not an unfamiliar one.

One of the hard things about learning to let yourself love things unreservedly again when you’ve quashed that instinct in yourself for much of your life—beyond the fear that it’ll be too much, that an obsession will consume you in a way you can’t sustain, that it’ll be off-putting to other people if you let it show, or that you’ll burn out your capacity for that kind of love—is that, with a not-insignificant frequency, an artist you really, really like and respect turns out to think people like you shouldn’t really be here.

It’s a difficult risk to contend with, when you’ve only just relatively recently learned to let go and let yourself fall in love again after so long, that every now and then, you’re going to be really into something or really intensely identify with a body of work (when that’s kind of a rare experience for us to begin with), and then wake up one morning to find that that creator thinks the world would be better off without you.

It makes it hard to let yourself enjoy something wholeheartedly, when you know you have to guard your heart against this possibility.

It affects what and how much I can let a thing mean to me once I know.

And it most definitely negatively affects my willingness to pay to see that artist’s work in the future.

Even beyond the fact of channeling huge amounts of money to an organization that’s been pretty useless at best and actively dangerous, at worst, to the very community it claims to speak for, this is the harm that it does to us, individually. We’re people built for overwhelming, obsessive joy, but it’s vulnerable to put yourself at the mercy of that passion and then have your trust in it smashed like that every now and then.

Maybe it seems like a small thing, comparatively, held up against all the things we struggle with. But it happens over and over and over again, and it takes a psychic toll over time. When you always have to be a little bit paranoid that this is how your enjoyment will be answered.

I don’t expect artists to be perfect people with wholly unproblematic views any more than I expect that from anyone else, and it’s not that I think autistic people uniquely should (or, realistically, could) be shielded from disappointment by public figures and celebrities, or that basically decent people can’t sincerely have different opinions about ethical matters. But, man…I really wish that more of them would do their research and search their own hearts and maybe, maybe, not put us in this position so damn often when choosing causes or charities to conspicuously support.

That’s all.

September 4, 2017

Fix your hearts or die

Posted in Uncategorized tagged , , at 8:39 pm by chavisory

This post contains SPOILERS for episode 18 of Twin Peaks: The Return.

It occurred to me, as I was looking for a RedBubble artist who might put this motto on a t-shirt or sticker for me, that, to the extent that this show could be said to have a thesis or a moral in any coherent sense, this might well be it.

“Fix your hearts or die,” we’re initially told is what FBI Director Gordon Cole said to his skeptical colleagues upon Agent Denise Bryson’s decision to live openly as a transgender woman, but throughout this season of Twin Peaks:  The Return, we see this warning play out in the lives of other characters and in the world of Twin Peaks as a whole.

Nadine fixed her heart, deciding she was capable of finding joy apart from maintaining her control of Ed and giving Ed and Norma their freedom to pursue true happiness together.

Ben Horne has fixed his heart.  We last see him at the end of season 2 bemoaning that he’s only ever wanted to do good, to be good, and at long last he seems to have mostly figured it out, though it clearly hasn’t been an easy endeavor for him.

Bobby Briggs has fixed his heart.  We’ve seen him capable of such impulsive malevolence and recklessness in his younger days, and such goodness, joy, competence, and responsibility more recently.  Bobby has individually embodied many of the dualities of Twin Peaks that most of its characters seem to sit on one side or the other of.  It hasn’t been easy on him, either.  He knows what it is to do both good and evil, more than maybe any other character in this world.

Whereas many of the characters who’ve met nasty ends, or seem to be hurtling towards them, or who cause the destruction of others, are those who would not fix their hearts.  Steven.  Richard.  Ray.  The “truck you” guy.

Becky is learning, maybe, that you can’t fix the hearts of others.  Only your own.

We can’t undo the catastrophic vulnerability, the moral damage to the fabric of the world itself done by something like the advent of the atomic bomb.  But we can work to fix the corruption of our own hearts, the juxtaposition of the overwhelming scale of the sin of Trinity and Hiroshima and Nagasaki with the more pedestrian struggles of the characters to make their own lives bearable seems to say.  We can’t always help what happens to us, what is done to us, but we have a choice about whether to follow that darkness into the future.

Will Sarah Palmer be able to fix her broken heart, or will the darkness we saw behind her face consume her totally?  Is there damage to the human heart that can’t be fixed?

I wrote a lot of this before I watched last night’s two-part finale–and as I watched Cooper find Laura in the forest and take her hand, I felt not relief or hope, but a mounting dread.  It mounted as Coop and Diane drove over the dimensional border, down that dark highway, and into Odessa.  This wasn’t Bad Cooper, but previously, I think we’ve only seen Bad Cooper driving into darkness this way.

dark road

He was choosing wrong.  Everything about the recurring visual language here tells us that Coop is making a horrible mistake, even in his determination to do good.  He’s trying to undo what has been done, to turn back the consequences of undeniable evil, rather than to carry those lessons into the future.

I do think it’s interesting that I’ve felt differently about other stories involving timeline revision before, and I don’t know what to say exactly other than that the worlds of Doctor Who and Twin Peaks are not the same and don’t work in exactly the same way.  Amy’s story isn’t Laura’s, Audrey’s, or Cooper’s.  In this one, a timeline can only be healed by reckoning fully with grief and guilt.  And the characters we’ve seen turn out for the better are the ones–notably Bobby–who have done that within their own stories.

Looking back, appropriately enough, it was Bobby who back in the very first season took the entire town of Twin Peaks to task at Laura’s funeral for its denizens’ complicity in her death, for refusing to acknowledge what was going on in front of their eyes all along.  “Everybody knew she was in trouble, but we didn’t do anything.  All you good people.  You want to know who killed Laura?  We all did.”

Laura can’t simply not die, and everyone involved not have to fix their hearts.

(Furthermore, if the events of seasons 1 and 2 catalyzed by Laura’s death didn’t play out, then BOB is still loose in the world, not banished back to the Black Lodge.)

We cannot go back on what we’ve done without compounding destruction and chaos.  Only forward, if we dare to fix our hearts.

August 17, 2017

Letter to my representative on H.R. 2796

Posted in Uncategorized tagged , , , , at 1:16 am by chavisory

This is my letter, going in the mail tomorrow, to my congressional representative regarding H.R. 2796, the Civil Rights Uniformity Act of 2017, which you can view here.

Dear Representative Espaillat,

I’m writing to ask you to vote against, and take any action possible against, H.R. 2796, deceptively titled the Civil Rights Uniformity Act of 2017.

From what I understand, this bill was written specifically with the intent of excluding transgender people from protection under existing civil rights law.

While I am not transgender, this represents quite literally a matter of life and liberty for trans people I know and love–a matter of access to employment, housing, and public life.

Furthermore, in this bill’s reliance on a poor understanding of the science of sex and gender–biological sex is extremely complex, and most individuals do not know or have any documentation of their “genetic sex”–it represents a potential invasion of privacy and serious access barrier to anyone at all who fails to conform to simplistic and repressive ideals of what a man or a woman should look like.

I thank you for your time and thoughtfulness on this issue.

August 12, 2017

Equality doesn’t feel like oppression.

Posted in Uncategorized tagged , , at 7:31 pm by chavisory

There’s an expression that has become hugely accepted in lefty activist communities that goes

“When you’re accustomed to privilege, equality feels like oppression.”

I wish we would retire it.  It’s always given me the heebie-jeebies and I had trouble verbalizing why for a long time. I’ve had parts of this post half-written for a while, but a cornerstone of my problem with it fell into place, unfortunately, this morning.

 

In the first place, I have never ever seen a good explanation of why it should be true.

I don’t feel safer or more secure at seeing fellow Americans abused and reasonlessly killed by police, or without safe water, or systematically denied educational opportunities, or having their voting rights suppressed, or disabled students of color funneled into prison.

Why should I?

Why should I feel oppressed at seeing fellow citizens treated fairly and equitably? Why? Why should I? Why should I feel oppressed at seeing people with different backgrounds than me well-represented in media? Or having a truly fair shot in the job market or decent housing or not having their children lead-poisoned by their drinking water?

There’s a presumption that achieving that would require taking anything from me that I consider worth having. And I don’t accept that as true.

Maybe you mistake what I value.

Nothing made me more furious when I was a kid than seeing other people treated unfairly and not being able to do anything about it. Nothing. I hated being treated that way and I hated seeing other people treated that way.

I don’t understand why I would look at it now and go “That’s fine.”

What’s true is that the sheer scale and pervasiveness of it has often been invisible to me for much of my own life.

Learning to see it doesn’t make me more okay with it. It makes me sad and rageful and overwhelmed at my own helplessness to just make it stop.

 

Furthermore, I do not trust people who tell me that they know better than me what I think, how I will feel, or how I should feel.

People who are sure that they know better than I do what is going on in my head or in my experience of myself, that they have greater authority than me to tell me what that is, who won’t take no for an answer about it, have not been safe or trustworthy people.

I have very few actual triggers, and that is one of them. It has almost always been a prelude to escalating manipulation or a ploy to gain my compliance or an attempt to undermine my trust in my own intuition or agency.

It makes me suspect that what you’re actually setting up is a justification for making me feel oppressed or mistreated as an objective in itself, telling yourself that what you’re doing is necessary and okay, and that whatever anger or unpleasantness I feel will just be a natural consequence of “loss of privilege,” and not a reaction to anything you do.

When I see other people being mistreated and then get told “well this is a system that benefits you so you must agree with it,” I recognize that tactic, itself, as abusive and manipulative.

No, no I don’t have to agree with it.

 

This morning, as I was reading the coverage of the white nationalist rally in Charlottesville last night, I encountered this brilliant Twitter thread about how these straight, white, so-called Christian dudes brandishing tiki torches have not the slightest conception of what oppression really means.

And someone contributed that quote to the comments.

And it hit me.

It’s so coddling. I want them held more responsible than that, than just to say “oh this is just what it feels like to recognize your own loss of privilege.” You know what? People have more ability to question their own reflexive reactions than that. These are not toddlers with no ability to take perspective or adjust their sense of proportion.

“When you’re accustomed to privilege, equality feels like oppression.”

No, it doesn’t.

No, these Nazi dingbats have no idea what oppression is like.

They have no idea what they are talking about. I will not validate their cluelessness and their false history and their rage at not being the only people who matter in the world like this.

I don’t think we should make their behavior understandable in this way. Plenty of other privileged white guys figure out how to come to terms with their loss of automatic dominance in the world without throwing Nazi rallies. I don’t think we should entrench the notion that this as just what it feels like when you see people who aren’t like you making marginal advances towards true equality.

Especially when these people have been explicitly encouraged with particular rhetoric to fear and resent and even take up arms against certain other groups of people, I think we should really hesitate to call their response just the natural emotional reaction to loss of privilege. I don’t want to give any cover to the idea that this is just what happens when people have to reexamine their place in the social order a little bit.

They made choices here.

It’s not just inevitable.

Unless the freedom to bully and oppress others was the only freedom you held dear in the first place.

July 17, 2017

Allies and alienation

Posted in Marginalization, Uncategorized tagged , , at 3:29 pm by chavisory

The last few years, I’ve spent a lot of time baffled and confused about many of the ways that activist communities talk to and about allies.

Until I realized that what “ally” means now…isn’t really what it meant, or what I took it to mean, when I was younger.

Around 10-15 years ago, in the contexts in which I was involved, “ally” had more of a connotation—or at least, I thought it did—of people or communities who were similarly marginalized making common cause, out of recognition that the prejudices against us worked similarly and had similar effects and implications, and that no one was truly free while anyone was not.

When I started having more contact with communities of activists again a few years ago, I was very shocked, for a while, to hear allies consistently spoken of with such disdain because that wasn’t my experience of the concept at all. I don’t know when things changed and “ally” came to mean something rather different.

Finally I started to suspect that this difference in experience as to the concept of allies may underlie a lot of miscommunication and strife, at least in part…

I see things like this, and I think…we may be talking about different things.

allies

Because when one group of people says “don’t alienate allies,” they mean,

Don’t show any anger or resentment that might be difficult or unpalatable to clueless privileged people. Don’t be abrasive. Don’t raise your voice. Be unfailingly non-confrontational at all times. Never tell me I’m wrong.

And people who claim the identity of “ally,” but behave like that, exist. They do.

But when another group of people says “don’t alienate allies,” they mean,

Don’t perpetrate the same forms of mistreatment, psychological abuse, and bigotry against other vulnerable people as both of you have already been injured by. Don’t recycle those very same dynamics into your own communities and belief structures. You can only hurt and alienate people that way who are already hurt and alienated.

 

I am not an ally*, but yes, I am alienated.

I mean, of course, you shouldn’t be able to alienate allies from their beliefs or support for your cause by not being nice enough because deeply-held beliefs about human rights shouldn’t be based on whether or not an arbitrary group of people is nice enough to you. It should be a matter of right and wrong. If a position on the human rights of a group of people is that easily shaken, it’s not a conviction, it’s just expedient.

So no, you should be able to alienate allies from their positions by not being “nice enough.”

But you can absolutely alienate people from wanting anything to do with you by being addicted to cruelty, by celebrating hatred, by re-enacting highly recognizable patterns of emotional abuse and coercion, by pursuing an agenda of upsetting people for the sheer sake of it, and by an alarming dedication to ends-justify-the-means reasoning.

These are the things that have alienated me from communities that I, at least in theory, belong to. I’ve been alienated by being told that other people know better than me what I think and what I feel and that I need to simply accept that. I’ve been alienated by demands not to use my own critical thinking or judgment or conscience, or to lie about my own life because that would make it more convenient to someone else’s politics. I’ve been alienated by gossip and smear campaigns and hypocrisy. I’ve been alienated by unwillingness to distinguish between missteps and malice and by embrace of the social control tactics of evangelical fundamentalism and outright abuser logic (“the fact that you’re defensive means you’re wrong so just admit it and apologize”).

I’ve been alienated by rules for allies that I can neither follow, nor expect anyone else to, not as an ally but as a human.

If I see women saying they hate men or that men are trash (and garnering social media accolades for it), that doesn’t make me any less dedicated to the equal rights of women. It just makes me profoundly sad. Because I thought we were supposed to be the people who didn’t devalue people for their gender or their bodies. I thought we were the people who didn’t celebrate hatred.

So when I hear you say those things, it doesn’t make me less committed to justice, it just makes me think your values are crap.

These are not issues of niceness to me, but of ethics and integrity and core values.

I don’t actually think I’m a particularly nice person and “niceness” doesn’t mean a whole lot to me. But civility does. Kindness does. Intellectual honesty does. Ethical consistency does. Freedom of conscience and of self-reflection does.

My values are not shaken. But yes, I am alienated.

So I can only imagine how people on the outside, looking at how we treat people and wondering whether they dare wade into engaging seriously with activism or issues of social justice, may feel.

I’m not “worried” about alienating “allies.” I know that the way we treat people has consequences.

I do not believe that the fact of fighting back against oppression, of being angry, of calling injustice what it is, makes us “just as bad” as our oppressors, but I am worried about how we undermine our own supposed values, when our communities turn out to be very, very willing to engage in the exact same modes of abuse and anti-individualism and authoritarian thinking as our oppressors. I think that what we are and are not willing to do matters.

I don’t believe that our rightful anger is hatred, but I see actual hatred being valorized and yes, I worry.

I am not worried about people who only want to be “allies” if it gets them enough brownie points; I am worried about vulnerable people seeking a social justice-oriented community and being told that the price of admission to being a decent person is to accept being treated appallingly.

I worry about who we become when we accept that.

That’s what worries me.

That’s why I’m alienated.

*Yes, of course I believe in working to understand intersectionality and standing against injustice and battling oppression in all its forms, but the designation has acquired too many terms and conditions that I can’t consent to, so I will not use it for myself.

July 7, 2017

Because Medicaid is Investment in Freedom

Posted in Uncategorized at 1:21 am by chavisory

Hi everyone–I’m having a wild summer with not so much time for writing; I’ll be back very soon, but in the meantime, this is an absolute must-read post by Cal Montgomery about what Medicaid means to the lives and freedom of disabled people, and why we must defend it.

Watch Well

People are asking why disabled people are suddenly protesting. It’s not new. The disability rights movement grew out of other movements of people labelled “unable” so it’s hard to date its beginning, but it was well underway at least by the Congress of Milan nearly 140 years ago, when hearing people decided that to be equal you needed to speak and to understand speech and set about stamping out Deaf language and culture.  Although a great many Deaf people reject the label “disabled” that many other groups accept and even take pride in, their critique of “ability” is echoed by every other strand of the movement.

But I’ll tell you why disabled people are protesting right now.  It’s because Medicaid is an investment in freedom.

Filmmaker and activist Dominick Evans said this morning, “I am terrified of the health care bill…. I don’t want to die. I don’t want to…

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