tag:blogger.com,1999:blog-78573209947072177302024-03-13T11:40:38.229-04:00(in)Visible SpectrumThe spectrum is all the colours.Unknownnoreply@blogger.comBlogger50125tag:blogger.com,1999:blog-7857320994707217730.post-1204659028417316342015-07-17T13:28:00.000-04:002015-07-17T13:28:04.433-04:00Uphill Both Ways: or, on the Privilege™ of having legs.<p>When two people cross paths on a hiking trail, the person going <a href="http://www.hikingdude.com/hiking-etiquette.php">downhill should yield</a> to the person coming uphill. </p>
<p>To those who haven't gone backpacking, this might be less intuitive. But when you've carried a lot of weight for miles, it begins to make sense.</p>
<p>Foremost, going uphill takes stamina and a certain amount of rhythm and focus take hold - anyone who has been in this zone will want that uphill hikers be allowed to keep that going.</p>
<p>Additionally, going downhill you have line of sight that you don't have going uphill (if you ride in a car notice that the passing zone of a double-lined rural highway is always when going downhill or flat. It's not only because your car has to work harder to accelerate uphill, the line of sight is better). Therefore hikers going downhill will usually see uphill hikers before uphill hikers see them. Yet another reason to initiate communication and to yield.</p>
<p>Now, I don't always follow that rule, and like many rules there are situations where this makes no sense. As the link above states, if an uphill hiker wishes to rest, it's perfectly acceptable for them to stand aside. The point is that it's their choice to do so. I also will yield going uphill to a downhill hiker who I can tell is an Appalachian Trail (AT) thru-hiker or any long-haul backpacker. I do this because while I may be hiking ten miles with all kinds of time, these folks have been on the trail conceivably for months. I stand aside when I'm able because I want to help their journey in that small way. Many times, I am thanked for this small gesture.</p>
<p>So what? I don't know. Let's take a right turn.</p>
<p>I've more or less abandoned notions of privilege as a vehicle for thinking about power. I may need to unpack it more but <a href="http://spectrumvisible.blogspot.com/2015/03/the-voice-of-their-anger.html">here's a brief mention</a>. It's not just an argument against "privilege" because it's being used as a tool for silencing. It is an axis, and not the only one. If we focus on it, we risk quibbling about personal responsibility and systemic oppression. We risk missing coercion and injustice but it's not just a question of having bigger fish to fry. We risk alienating people who would otherwise be most likely to engage in demonstrably constructive conversation.</p>
<p>Maybe I'm becoming a pragmatist. I simply tire of attempts to tip scales by using privilege language as a corrective act. Of claims to being more (or less) deserving of a voice or authorship because of privilege axes. Ten years ago I might have bristled at a charge of lefties playing "Privilege Olympics" but now I bristle at providing a laundry list of my marginalized identities as license to be heard or taken seriously (or not dismissed). I value ideas -- including where they're coming from -- but I will not rate the value of a speaker's words by demerit points (the more privilege you score, the less you have any right to say anything at all).</p>
<p>Do oppressed people deserve more? Is it a Thing that some have to work harder than others?</p>
<p>Of course. But downhill hikers don't yield because uphill hikers deserve the right of way. Downhill hikers yield because of empathy. Downhill hikers yield because they've been there. Damn the metaphor -- yes, some folks are always hiking uphill and some folks are always, it seems, hiking downhill.</p>
<p>So what if I am always hiking uphill, and some downhill hikers just aren't yielding? And dammit, my load is pretty heavy. What then?</p>
<p> I'll leave you with this. I have choices:<br/>
<ul>
<li>Post signs everywhere to alert uphill hikers that I'm sick of yielding to them. (ineffective)</li>
<li>Keep hiking, forced to step aside and feel more anger every time I'm not yielded to. Complain when in friendly company. (passive)</li>
<li>Just don't ever complain. At least I have legs. (internalized oppression)</li>
<li>Ask them politely and explain why to those who listen -- ignore the ones who respond with expletives.(splaining)</li>
<li>Whack/stab them with my hiking pole. (violent)</li>
<li>Tell them they shouldn't hike. (coercive)</li>
<li>Keep trying to get them to understand what it's like to always hike uphill, but then resent any attempt to identify with me because how could they know what it's like to hike uphill? They can't. Never mind that carrying 30lbs downhill with bad knees has gotta hurt. (denial of empathy/projection of pity)</li>
<li><em>Why yield? Why should I *ever* yield?</em> (...)</li>
</ul>
I'm not sure there is a good way. I'm sure I'm missing ways.</p>
<p>I guess to me it raises questions. What is the difference between being deserving of something and that something being just? I think that's up for discussion, and it has no one answer (especially regarding justice -- given that "social justice" brandishes a seemingly very different set of ethical assumptions than other notions of justice).</p>
<p>But that last stance of refusing to ever yield: beware a position of pride too great that you lose the very dignity you're fighting for.</p>
<p>Peace.</p>
Anonymoushttp://www.blogger.com/profile/00132593380913788450noreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-53985736419921382162015-04-05T17:44:00.000-04:002015-04-05T17:44:13.650-04:00some osho<p>These were too long to tweet, so I'm putting them here.</p>
<p>I lovingly call OSHO a heretic. He is. Much of what he writes about is scathingly critical of monogamy, the church, state, and many of our ideas. But they are all meditations on attachment and ego. I love his heretical ideas. They make sense in my heart, even when I hate what he's saying.</p>
<p>Here is a passage I absolutely resonate with:</p>
<blockquote>Remember, love is not an attachment. Love knows no attachment and that which knows attachment is not love. That is possessiveness, domination, clinging, fear, greed -- it may be a thousand and one things, but it is not love. In the name of love other things are parading, in the name of love other things are hiding behind but on the container the label LOVE is stuck. Inside you will find many sorts of things, but not love at all. <br/><br/>
Watch. If you are attached to a person, are you in love? Or are you afraid of your aloneness, so you cling? Because you cannot be alone, you use this person so as not to be alone. Then you are afraid. If the person moves somewhere else or falls in love with someone else then you will kill this person and you will say, "I was so attached." Or you may kill yourself and you will say, "I was so attached that I could not live without her or without him."<br/><br/>
It is sheer foolishness. It is not love, it is something else. You are afraid of your aloneness, you are not capable of being with yourself, you need somebody to distract you. And you want to possess the other person, you want to use the other person as a means for your own ends. To use another person as a means is violence. [161]
</blockquote>
<p>excerpt from Osho. Love, Freedom, Aloneness: The Koan of Relationships. Osho International Foundation St Martins Griffin, NY 2001. </p>Anonymoushttp://www.blogger.com/profile/00132593380913788450noreply@blogger.com2tag:blogger.com,1999:blog-7857320994707217730.post-6863376180871932362015-03-28T13:00:00.002-04:002015-03-28T13:00:25.650-04:00Autism and The Erotic as Power<p><a href="http://www.cds.hawaii.edu/sites/default/files/downloads/resources/diversity/SisterOutside.pdf" target="_blank">Uses of the Erotic: The Erotic as Power</a> by <a href="http://alp.org/about/audre" target="_blank">Audre Lorde</a> has been a seminal essay in my growth. It struck a particular chord with me in my 20s and continues to inform some of the ways I think about the world.</p>
<p>In order to understand where I'm coming from with this, I think it's important to delve into what the word erotic means for Audre Lorde. The link above contains the full PDF and I strongly encourage reading the entire thing. However here are some quotes to begin:<br/>
<br/>
<blockquote style="color:#999;">The erotic is a resource within each of us that lies in a deeply female and spiritual plane, firmly rooted in
the power of our unexpressed or unrecognized feeling. [53]</blockquote>
<br/>and <br/>
<blockquote style="color:#999;">But the erotic offers a well of replenishing and provocative force to the woman who does not fear its revelation, nor succumb to the belief that sensation is enough. [54]</blockquote>
<br/>and <br/>
<blockquote style="color:#999;">The erotic is a measure between the beginnings of our sense of
self and the chaos of our strongest feelings. It is an internal sense
of satisfaction to which, once we have experienced it, we know
we can aspire. For having experienced the fullness of this depth
of feeling and recognizing its power, in honor and self-respect we
can require no less of ourselves. [54]</blockquote>
<br/>and <br/>
<blockquote style="color:#999;">Another important way in which the erotic connection functions
is the open and fearless underlining of my capacity for joy.
In the way my body stretches to music and opens into response,
hearkening to its deepest rhythms, so every level upon which I
sense also opens to the erotically satisfying experience, whether
it is dancing, building a bookcase, writing a poem, examining an
idea.<br/>
That self-connection shared is a measure of the joy which I
know myself to be capable of feeling, a reminder of my capacity
for feeling. [56-57] </blockquote>
</p>
<p>The quotes above do not capture what Lorde means in entirety. However it's a decent starting point. The erotic is not pornographic - Lorde writes of it as in the realm of women but also a dimension not explored enough in men (as it is in the realm of women); it is devalued, but kept around because it is powerful; its power is subdued by the contortions of a culture(s) that fear(s) this power. Do people fear the erotic because it is in the realm of women-power, or because as a kind of power it is one that women are particularly good at embodying (if they let it)? I hesitate myself to gender the erotic, however I understand the particular place Lorde was writing from here.</p>
<p>The reason this captured my attention so much and resonated with me was in the lines like, "..every level upon which I sense also opens to the erotically satisfying experience..."[56] </p>
<p>I can relate to the erotic connection with building a bookcase. The erotic is connection to self and others. So at a very surface level, if one does not attempt to really understand aut-istic - the connection is as simple as aut-o-erotic. But "autistic", despite the propaganda, is not "jailed inside ones own world and not really human", as much as eroticism isn't the one-dimensional masturbatory fantasy of much pornography. The erotic is life-force. This connection exists on every dimension of being. It is what artists tap into when they create, and also what mathematicians tap into when they work out a new equation.</p>
<p>It is, with respect, perhaps what some people only experience during sex, and why the erotic is often equated with sex and nothing more. Sex is great - and sex is so many things, and many of those things don't involve orgasm, or things we would think of as sex. There are no delineations -- as Foucault wrote, (roughly), before there was homosexuality (first) and then heterosexuality (second), there used to be bodies and pleasure. We've certainly categorized things in ways that divide up the erotic ever so much that it is not easy to grasp the entirety of what it means to live in the power of one's experience.</p>
<p>Back to those dimensions of being -- autistic spaces within me are dimensions of my being. The entirety of what it means to be autistic isn't exclusively the purview of the autistic. I could describe one aspect of my joyful experience with light and dust motes and this dimension is highly relatable to a cinematographer, even if he isn't autistic -- because his uses of the erotic, his power, includes this capacity.</p>
<p>If autistic capacity is undervalued, I believe it is for some of these same ways that the erotic spaces are undervalued -- however they have been around all the time, forever. Some writings on meditation and mindfulness touch on the kind of connective presence I'm talking about. However I don't mean to say autists are closer to enlightenment -- I mean that for each, our capacities are different. The capacity for kinetic resonance within space and light and sound is a particular capacity -- and less valued, in our world, than the capacity to understand office politics. But both are, I would argue, just as important to our humanity.</p>
Anonymoushttp://www.blogger.com/profile/00132593380913788450noreply@blogger.com2tag:blogger.com,1999:blog-7857320994707217730.post-58996490795767837412015-03-15T10:36:00.001-04:002015-03-15T10:36:49.671-04:00The Voice of [Their] Anger
<blockquote class="twitter-tweet" lang="en"><p>The angry voices - listen to their meaning, there is the potential for understanding, there is Real in there. Do not dismiss. <a href="https://twitter.com/hashtag/beyondhate?src=hash">#beyondhate</a></p>— Aurtist (@AuRtist) <a href="https://twitter.com/AuRtist/status/577104936040804353">March 15, 2015</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>
<p>I grew up witnessing anger being silenced, including my own. I have also started to learn about my anger as a tool which can focus me toward what needs to change, and have the energy to change it. The silencing of anger, then, can be a particular kind of power against me.</p>
<p>Black people are angry. Disabled people are angry. Fuck your politics. Listen.</p>
<p>I have done a lot of privilege work since the 90s and while there is utility to that framework, I could not continue to look at the world through such a framework. In my experience it was used as a tool for silencing when it became the main framework for discourse. Power is complex and if we explore it along this one axis -- even through "intersectionality" (an attempt, perhaps, to introduce mathematics in an erroneous fashion as if we could ever quantify qualitative experience of oppression). </p>
<p>I cannot think about race without remembering how the legacy of Jews (exile, genocide, diaspora) permeated the everyday experience of my [family] culture. I cannot think of race without imagining similarly, a legacy of Black people (slavery, colonisation, scientific racism) permeates the experience of their cultures. No, we are not a monolith (And I blame American solipsism and exceptionalism for some of the odd political stances I see). We inherit the trauma we didn't ourselves experience -- a Republican from Wisconsin talked to me about his work around historical trauma and I admit to being surprised his politics allowed that. Shows what I know.</p>
<p>At the same time, it doesn't diminish that we haven't just experienced second- or third- or N-generation trauma, we can also experience it in the daily ways that still exist. People still throw pennies at jewish people, and target black people as thieves, and on and on. We can use the language of microaggressions as a way to capture the chipping away of trust and safety one can feel going around the in the world, and we diminish the right anger at the macro aggressions - the acts without plausible deniability. The egregious acts of coercion being done because of an unchecked and toxic and repugnant orthodoxy to beliefs that should have been obliterated by science and freedom-fighting.</p>
<p>There is power, there is resistance. There is privilege, there is coercion, there is hegemony. There are many lenses, and many filters to apply to those lenses. Often, it seems common to assert a view through a particular filtered lens, then argue with others who employ a different filtered lens about who has reached the wrong conclusion -- without ever working alongside one another to even reveal what lenses we are employing. This seems like a great waste of fine minds. For if we allowed those revelations perhaps we would have a language for philosophical argument of the deeper issues, rather than building our skills for internet trolling.</p>
<p>When I read the arguments between people that ultimately devolve into silencing, hate speech, because of unchecked racism or ableism or any other ism -- I don't see the value in undermining the "-ism" because it is a left-wing idea of oppression, and I don't see the value in shutting down the hate speech when it so very clearly comes from a place of misunderstanding. Hold up a mirror. Listen. Be willing to hold the anger of the other. But let me be clear -- it is not so much on the people who are angry -- legitimately angry from an unrelenting legacy of receiving hate -- to do this work. No, there is a difference between losing many peers to race- and poverty-related violence and being angry about that, and the anger of rich white people at "their" resources, earned on the backs of those very people, being used to address systemic problems. No, anger at being fucked over by a world you want to change is NOT the same as the hate borne of a perceived loss of privilege. I use privilege in that sense very earnestly.</p>
<p>In other words, patriarchal/misogynist butthurt is NOT equal to the rage at a system that murders women and trans people. Got butthurt? I have toys for that.</p>
<p>But to those who would turn away from us who are angry -- legitimately angry -- because race may have no scientific meaning but it is culturally salient and it MATTERS in the sense that it materially affects a person's experiences, opportunities, and safety in the world, and because of that, <em>being colorblind is at best a copout </em>-- then that angry must matter. Not only must it matter, it is the path to freedom. Not only must we listen to the anger of black people, woman people, disabled people, trans people, first nations people, those in poverty, those who witnessed genocide, those who are being enslaved, etc -- we must understand that anger is like an arrow at the heart of coercion and evil and we must amplify these voices and distill their meaning and behold their power with the tenderness it deserves; without ownership, destruction of authorship, or compromise of message. </p>
<p>The more uncomfortable we feel about those voices, the more it's on US to work that through and pay even closer attention. There is no solution until those voices aren't just a part of the conversation: <em>they are the conversation</em>.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-65790297920327162472014-09-28T14:23:00.002-04:002014-09-28T14:23:30.289-04:00Life Change, Regret(maybe), and Self-transformation.<br />
There's something I don't like about the term "Love of my life" because it implies some kind of privilege to the idea that a single person is the only one I've loved, or puts the love in a place of importance or significance above the other loves -- which may reflect some people's truth but I feel wary about it. Even if my most recent love felt the most significant or deep or held the moments of most growth in my life, I don't feel like that places it above the others. I don't wish to devalue any relationship I've had, however helpful, troubled, or life-changing it was or is. While I don't begrudge the use of this term by anyone else, I've struggled with its meaning and have come to the conclusion that it isn't useful to me.<br />
<br />
I'm also in my late 30s, and haven't figured it out. As my second marriage edges on the brink, I struggle with self-care and boundaries and how to be healthy in relationships. Parts of this feels shameful, and when I reflect on it they always did feel shameful, even if I intellectually know that many people figure things out later than this, or maybe even never -- or struggle, and figure out at some point that intimate relationship is not a priority for them, and they shift (gracefully or not) into an independent frame of reference. This framing can still allow for intimacy without subverting what feels like a healthy ego boundary. Sometimes this isn't entirely healthy either; it's possible to fall into some trap of fierce (Westernish) individualism that denies the realities of how much we need love, caring and connection. However I've discovered many people who find some way to grow a community around them that means, being single into older age they don't find themselves completely alone in squalor -- I think this is a large fear of people in our culture: the idea that if we don't partner, then we will become isolated and face our later decades as a person without love. That if/when we become sick and more dependent (especially if we haven't pro-created, but not exclusively -- and the correlate, that dependence is Bad, although this needs critique and reframing), the only logical outcome is death because it is our family alone who would take care of us in this state. And without a partner (or if a partner dies, then without children), society discards us. If we're lucky we can find social connection, support, and an occupational therapist who can help us use old-age benefits to work our way into an impoverished non-independent living situation. It's bleak, we think, to end up there. So regardless of our age, if we're not in relationship, many spend vast amounts of energy finding love.<br />
<br />
It seems to me that when people have found love, that confusing mess of support, boundaries and legacy of dysfunction confounds a romantic ideal of mutually supportive and healthy coupling. Perhaps people land naturally and easily into this ideal situation -- and much of the time, they credit compatibility, or the other person's devotedness, or some foolish pattern on our own part of previously looking for love in all the wrong ways (but thank goodness this one person finally came around and showed us what we were missing, or what it really means to love/be loved/be treated like we deserve). I'm skeptical of this.<br />
<br />
The people who have "arrived" -- who, at whatever age they found "it" -- can safely and confidently say (this moment anyway) that their coupling satisfies their need for wholly supportive companionship balanced with individual growth (no messy boundaries here, folks). Maybe they were young sweethearts who were always "the one" for each other and achieve their 50th wedding anniversary as prime examples of how marriage works (these people almost never say it was effortless). Or maybe they learned through a series of mediocre/difficult relationships before figuring out (maybe in their 30s, after a divorce or something), consciously or not, how to cultivate intimacy without dependency; or they keep soldiering through less than great relationships and credit the wonderfulness of their current partner with helping them work through things in order to relate in healthy ways. Or maybe they had some seriously crappy or even abusive relationships or marriages, and then gave up for a while, to "find themselves", and then in their 40s or 50s or 60s, and figure out, after a decade or two or three alone, that it's entirely possible to self-care, and that a kind of healthy love/companionship is entirely more possible when the people involved really are their own person and that the intimacy they can cultivate together contains the full sense of differentiated egos each working in their own way to support one another to keep growing and learning.<br />
<br />
Whatever it is or is not remains a mystery to me. The above is merely intellectual speculation, mixed with an intuition about the truly healthy and supportive relationships I've witnessed in my life: the childless couple who feel truly like individual people, entwined in shared interests and their own creative, professional and emotional pursuits (they've worked for it, but we rarely see the messiness in it, just the happy outcome). Or the couple who seem to be raising absolutely amazing kids because they struggled for a while to understand that they come from different family cultures and get that a) what each person wants and needs and expects is different, and b) how they learned what demonstrating love is supposed to be doesn't necessarily match what their partner learned, and c) that communication isn't done one way, and d) that we have to see the people we love, whether we found them, or birthed them, as people *first* and roles second, in order to support the person they can become (not the person we want or think we need them to be). Or the couple who seem completely not enmeshed and therefore able to travel for business or pleasure each on their own, support full and vibrant social/creative/professional aspirations of their partner with no resentment or obstructionism because their adult self-sufficiency means that their partner's endeavors come alongside (not before or after) their own aspirations.<br />
<br />
I may seem too harsh on the less than ideal arrangements, which can work in their own way. However it's really hard to tell, particularly in the self-representation of blissful baby-making and kitchen re-modeling that seems to represent successful adult pursuit=happiness. I can look at all the things people show me they are doing in marriage, parenting, house-buying, cottaging, hobby-making, business making... and become despondent that these are not things I do (or tweak my self-representation towards that model of responsible-adult-healthy-person, and feel like I'm lying in the process).<br />
<br />
People may privately come to some degree of acceptance that they are mutually dependent or even co-dependent, but while it's mildly unhealthy it functions in its own kind of balance for the most part, only flaring up into unhappiness during times of stress. Or people who are truly unhappy but privilege commitment and tenacity to keep struggling through the issues rather than give up and risk being alone (or really, accept that there is struggle, and it's not wrong, but that the benefits of being together still outweigh the drawbacks to leaving). Or people who have kids, and their relationship is not outwardly toxic so they find their ways of living together for economic benefit, energy conservation, pragmatic support, kid raising -- and kind of relent on the probably-idealistic-anyway sense that one can continue to thrive as a person and grow and dream and take risks even as adult responsibilities grow and one necessarily struggles with the sense that there is no time or space for the playfulness or deep exploration necessary to have lifelong continued growth and personal fulfillment. Go to job, come home, do the chores, share a bed, rinse-repeat; self-exploration and play is the privilege of the selfish, childless people (even as what I'm talking about isn't about some Jetski Method of Letting Go<span style="background-color: white; color: #545454; font-family: arial, sans-serif; font-size: x-small; line-height: 18.2000007629395px;">™)</span>. Maybe we've lost the sense of value that comes with long, thoughtful and intelligent cultivation with others. Of respectful debate around subjective questions, of the many many layers of human growth that contribute to a better world. Trivial things, smartphones and google-facts aren't inherently bad things, but it becomes easier to get used to missing a rich community of ideas if we're all kind of watching little screens instead of observing what's around us. Keen observation is different from consumption. Do many of us have a similar relationship to our partners? Do we become frustrated when another human being isn't so readily packaged and consumed for our pleasure? Is it because we stopped seeing them for who they are because the projection is more comforting and desirable than they are? Has it ceased to be rude or narcissistic to demand the presence of others but then respond to them only as fits our purpose?<br />
<br />
===<br />
<br />
Taking it slowly out of the abstract...<br />
<br />
My recent (second) marriage collapsed because it was vulnerable (I dare say fragile), even before events of April 2013 thrust us into an impossible level of turmoil. It wasn't my first long-term relationship in which I struggled. It was hard for me to understand the problems, and easy for most people outside that relationship, who loved and advocated for me, to understand how complex and nuanced the difficulties were. I had supports who seemed to get (as their own experience mirrored) that relationship problems were never a simple single-sided problem residing in the other person at the same time that they could hold my pain and confusion with a degree of empathy. They could support without blaming my partner, or point out my partner's problematic treatment of me with compassion for us both. I credit this in part to their own recognition of how much work healthy relationships take, of how much past trauma can affect the ways we related, and most of all, recognize that if they thought I was a good person, then they must honor that I had/have real love, caring and respect for my partner even if it is a troubled relationship. I have had others who took the tack that relationships shouldn't be so much work and therefore my partner is the Wrong Person. These same people could also point out that I'm too emotional or intense, or over-analyze -- which invalidates the kind of person I am (one who analyzes a LOT, who feels very deeply, and feels quite confused about things.<br />
<br />
My own parents have been together about 42 years, and this included a period of seriously considering divorce or separation, but they ultimately worked through that. So in many respects they have been successful, and yet I remain in a place of confusion about the dynamics in my family that equipped me to be in relationship/family, and other dynamics which didn't particularly support the ways I struggled socially as a kid and which impact my ability to have healthy boundaries. At least in this culture, people can often phase through a series of emotional states wherein they blame their parents, feel wounded and angry about things, differentiate themselves, eventually realize that their parents both had an effect but are not to blame for the set of relational tools we developed, and to whatever extent they affected that set of tools, if those tools need re-organizing or changing, it is not up to our parents to fix it for us - it's a personal project we engage in with trusted friends, lovers and therapists. But it's equally easy to cling to a sense that our own toolbox is wholly natural and complete; or that our parents must acknowledge the bad stuff they imparted in order for us to be released from the bondage-illusion of having to please them by being like them (that often just isn't gonna happen); or that our partner simply can't work with our set of tools -- our partner has the incomplete and broken toolbox. These illusions harm everyone involved.<br />
<br />
Our (my) defensiveness around our (my) own fallibility is also a barrier. Some of us maybe grew up developing a healthy ability to try and fail, make mistakes and own them, apologize, repair, and grow. As a perfectionist, highly sensitive person with a faulty sense of myself as fragile and less powerful than I probably am (or at least unequipped to deal with failure, or expect to always be perfect the first time), making mistakes is a source of great despair and emotional turmoil. Handling the emotions that come with Being Wrong is a skill I'm working on. But it's equally easy for me to take on blame and churn on it endlessly, which both minimizes my agency and does nothing to repair actual damage I enact on my attempts to have intimacy (a self-defeating pattern). I can endure intolerable levels of harm to my emotional well-being so that I don't harm my partner, but inevitably I collapse and harm my partner because of this entrenched ignoble strategy for "supporting no matter what" leads to being unable to support, leads to abandoning, and ultimately the collapse of a relationship in spite of really caring.<br />
<br />
My previous partner (first marriage) and I ultimately parted ways because, in part, I struggled with overwhelm and collapse (trying to get through grad school with undiagnosed autism and a complete lack of understanding of how I could (ask to) be supported). I had also been unfaithful about 5 years into the relationship, and while we attempted reparations and got married, I don't think we/she had healed from that betrayal. But at the time we made the overt decision to end our relationship, I had descended into depression and less than helpful psychiatric treatment, and I don't blame her for eventually pulling away and giving up because I had drawn into myself, not knowing how to get myself out of it. She couldn't save me. And I couldn't be the partner she or I wanted.<br />
<br />
My most recent partner was harmed badly by events external to us (but exacerbated by a distinct set of vulnerabilities in our relationship, including our uneven power dynamics, a very thin social support network, and both of us having a history of complex trauma). I was unequipped to support him through; he collapsed, and I collapsed. We kept trying, but that trying felt to me like continuing to put my bare hands into fire, trying to prove that I could solve the problems, stick with the person I love -- even taking on the problems that weren't mine to solve, and simultaneously churning in confusion around what was mine to own. Also, allowing and contributing to very messed up dynamics around who was to blame for hurt, misunderstanding -- blame is a toxic, no-win enterprise. I left three or four times, including one time when I had promised I would not abandon him, and breaking that promise is both inexcusable and understandable given the circumstances I can't fully outline here.<br />
<br />
In any case, my second marriage has been one of hope, over and over, that we two people who have felt alienated in the world, afraid, struggling, vulnerable, hurt -- could help one another heal. That the notion that the ways we fight and struggle could be seen as arguments for breaking up or seen as opportunities (if we let them), and yet the patterns that emerged, the projected trauma, the ways we both increasingly withdrew into our own outrage at unmet needs, unstated desires, focus on our own hurt (and a demand for the other to own up and take blame for their failings as if those could ever be discrete from our own failings -- and what about not focusing on failings in any case, and how much is it reasonable to expect the other person to change because we want them to for our own needs/expectations? Not at all, because we don't change because someone else demands for us to). There are too many complexities, and they can't be reduced no matter how hard anyone tries.<br />
<br />
One of the most painful decisions I have made in my life was to leave this person I truly and deeply care about - even as he tells me repeatedly that I demonstrate over and over that I don't truly care about him. It's painful because while I left and came back multiple times during post-marathon upheaval, even during times of my own unemployment, I ultimately left once I was almost 6 months into a job that paid enough to support myself in Boston, and left him in a state of unemployment, active PTSD symptoms, and already having lost friends and other supports. I have to live with the duality that I both made the decision I needed to make for myself, and left a person at the worst time in their life (what happened to in sickness and health?). I have to sort out the contradictions within my heart every time I need to establish boundaries with him, to recognize an emotionally dangerous dynamic brewing, even if it means that exiting that dynamic invites accusation that I'm doing wrong because I flee every time I'm told that I'm doing something wrong. Or that I'm making excuses when I struggle with boundaries, or fail to set them and then screw up (thereby causing hurt). The confusion, between his actions and my actions, the effect they have on the other, and how to deal with this in a context of deep emotional pain and fear, well it's a confusion that tears me apart. It can destroy a morning or an entire day. It can send us both into spirals of depression and shame and hurt. I can feel like I'm choosing between sustaining my job, my emotional wellbeing (which hurts him), or trying to pour energy into empathy, caring, listening, and deep, long conversations that are necessary and potentially healing in the long run (except that I can't predict at any time whether they end up being constructive or harmful).<br />
<br />
And it's a lonely place. I have some sympathetic friends who have "been there" in one way or another, and advocate the setting of boundaries even as they understand that the boundary setting is like asking me to stop being being a people pleaser -- undoing a lifetime of being oriented away from my own needs, even if no one is explicitly telling me that my needs don't matter, that's... entrenched stuff. I want to change it but it's a monumental task, particularly within the context of a long-term relationship with so much caring and so much pain, and highly contentious ways of relating.<br />
<br />
I haven't told my partner that there is no hope of reconciling. I haven't said that we're over definitively, for good, because I feel that would be dishonest. It is my true desire that we work on our own issues, with a degree of better boundaries, and if possible to remain supports in one another's lives. This would be easier, and more reasonable, if he was able to work right now and financially support his own living situation rather than decimate years of savings. It would be easier, in some ways, to completely cut off contact and insist we both engage in intensive therapy before exploring whether that individual work brings us to a space of relating differently. But these aren't the reality. I can sometimes try to carve out a boundary of no contact for a couple of days, but even that feels harsh and wrong even if I truly need that space.<br />
<br />
Most each step I take to establish my own physical and emotional space (for the first time in my almost 40 years) feels full of potential for discovering my own patterns, my own needs and rhythms, a refuge to which I can retreat and heal from the assaults the world places on my introverted nature and overly excitable sensory system. There is something inherently positive and self-reinforcing about doing this - from setting up furniture, to living as minimally as possible, to coming home on a Tuesday night without the energies and needs of another person adding noise to my already noise-filled mind. To hear myself for the first time is both frighteningly exposing and strangely good - like listening to oneself being interviewed on the radio. Is that me? Wait. Really? In the absence of anyone, this is my voice? This is my heartbeat? I can choose silence? For someone who finds mirrors uncomfortable, my own eye contact too intense (let alone looking others in the eyes), being alone is a project in self-awareness that only when faced with that aloneness am I realizing how much I cocooned myself in the energy of others, a multi-channel radio that drowned out my own frequency. It's not that others necessarily drowned me out on purpose. I believe I lost the signal a long time ago. There's still a lot of static.<br />
<br />
Each step I take also feels like a betrayal of him. Like a giving up, even if that is less an abandonment than a letting go in order to wander out into the wilderness of myself and find what it is I need so that I can come back more intact and clear and healthy. Even if by doing so, I hurt him in the short term, yet in the long term, at the other side of the pain is a gift of a more whole me (which is primarily a gift to myself, from which my partner benefits).<br />
<br />
So I have my own apartment. I'm working full time, setting up my space, newly on a board of directors, try to go to yoga once a week, try to see a friend, and try to navigate the space that is: I care about my partner, I care that he's hurting, that he feels he's collapsing without me, that he feels abandoned by the world, that he's angry and resentful at me, that he is caving to a message from the world that he is not wanted and doesn't matter. Except it's entirely possible to become the focus of those problems: I'm the one to fix it, repair it, address his resentments and continue holding the promise of a future together (at worst, the idea that it is my problems that are the main barrier to our relationship success) -- and that stating and re-stating what many have told me (therapists included) that we can't create a healthy relationship if either one of us refuses to own our shit and work on it. Which isn't going to happen if either one of us dwells on whether the other is owning their own shit and working on it.<br />
<br />
This writing has gotten entirely too long. Sorry. But thank you if you're still reading.<br />
<br />
One of the struggles I've always had is managing the network of relationships that is community. What do those people I know think about this other person I know, and vice versa, and what effect do I have on others' perceptions of people in my life, especially my partners?<br />
<br />
Did I destroy others' positive regard of my partner? Is my challenged ability to hold all the meta-data of networked community what failed my marriages because we could never have the community support any marriage needs to succeed? Because I couldn't do it? Because I couldn't be "we"? Or because I was too unhealthy "we" and not enough "me"? Or too much "we" to everyone else but him, who felt I was selfish?<br />
<br />
If I'm unhappy in a relationship, am I primarily influencing whether they judge that unhappiness to be a mutual state, the fault of my partner, or my own? Or does each individual's ideas of what a healthy/successful relationship is (whatever their version is of my own ramblings above), ultimately decide their approach to how they support a loved one going through difficulties?<br />
<br />
Like if people think it's right to stick it out no matter what (don't divorce if you can help it), then I'm wrong for leaving. If people think relationships should just work and that if it's work, then I'm with the wrong person. If people think that relationship communication is key and that this is a skill not an inborn trait (that it's something they can learn), they may be neutral about whether I should stay or go, or trend one way but feel supportive either way, as long as the effort within the relationship is balanced with both people constructively working on communication.<br />
<br />
As it is - many people feel that my separation and getting my own place is absolutely the best thing I can do. I think many would feel disappointed or even betrayed if, 6 months from now, J and I got to a place where we wanted to enter couples therapy and explore getting back together. As for how I feel? I'm scared, confused, and trying to discover that small voice telling me what the next moment wants.<br />
<br />
At least for now, that small voice is whispering that being alone is the necessary thing. So don't congratulate me too much, because this hurts a LOT. Don't reassure me that with time I'll separate more and it will be better, because that feels too simple, and ignores that the man I left is a real person with feelings who you don't care about. You may be able to justify not caring about him because you care about *me* (which, just to say, hurts me), but this doesn't help ease the pain. You may not understand how deep it runs, this feeling of being unable to discern my own needs, like pulling off the Red Shoes because they keep me in this noisy dance and it needs to stop except the Red Shoes don't just pull off. I'm not the same as your friend who had to get away. I'm not the same as you, who got lucky (or had the tools) to be in a relationship already that fully supports and enables you to be your own person. My partners never intentionally kept me from this project, so it's not their fault, however if they unintentionally interfered with it, then I need to develop my OWN awareness and call to action from which I can move forward.<br />
<br />
This is entirely too long. To quote that John Mayer song, I'm "like a maze where all of the walls continually change".<br />
<br />
Thanks for rambling with me.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-82953437540974530752014-02-14T11:36:00.002-05:002014-02-14T11:37:29.665-05:00Ways I LoveLove, not Fear.<br />
<br />
I first thought of other people's fear, but then thought that what I really wanted to blog about was self-fear. Fear of the world, fear of the politics, fear of all the hate, fear of other people, fear of being judged.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://lovenotfearflashblog.files.wordpress.com/2014/02/flashblog-entry.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://lovenotfearflashblog.files.wordpress.com/2014/02/flashblog-entry.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image description: Text on red background with heart design. Text reads: Flashblog Love Not Fear, presented by Boycott Autism Speaks. Submit your: poetry, essay art, photography, etc. by February 13 @ 12PM EST email to:info at boycottautismspeaks.com inside the heart design is the hashtag #posAutive</td></tr>
</tbody></table>
So I'm a day late, whatever. I have never participated before in a <a href="http://lovenotfearflashblog.wordpress.com/" target="_blank">Flashblog</a>. I can always post on <a href="https://twitter.com/aurtist" target="_blank">twitter</a>.<br />
<br />
I don't know what to write that would affect other people's fear. But understanding fosters love, so I guess starting there is something.<br />
<br />
Someone wrote (paraphrasing) that the big loss that autism brought [them] was never being able to hear "I love you" from their child. What's interesting about that is how much that didn't really say anything about autism itself. Maybe it says something about how much fear there is about the myriad of other ways, aside from words, in which one can say I love you. I don't judge this comment, although it feels attached to so much sadness. #LovenotFear means that harsh commentary on them is a move away from love. I'd rather try for understanding. Are words the only way to say I love you?<br />
<br />
There is sign language.<br />
Stimming on your beard may be one way to say I love you.<br />
Showing my favorite toy for a moment is another way to say I love you.<br />
Talking to you a lot about what I care about is sharing myself, and a way to say I love you.<br />
Putting my head in your hand is a way to say I love you.<br />
There are many more.<br />
There IS love. Do you see it? Do you feel it?<br />
<br />
Except I fear myself. I fear myself going out into the world and being judged as less than or wrong, because I think, behave or look different from an expectation I didn't create. If the clothing I need to wear in order to focus on being a part of the world is "odd", I want to be able to love that and for that to be okay.<br />
<br />
"People" share that tired wisdom that one must love oneself before anyone else will.<br />
<br />
I think we learn very young how to love ourselves, from others. So really, we don't do this by ourselves. We can't love ourselves, despite the whole world telling us that is an illegitimate love. We have to love each other, it's the only way through.<br />
<br />
So love the quirks, love the struggle, love the odd, love the difficult, love the strange, love the frenetic, love all the ways the souls around you manifest in the world, however it is they manifest.<br />
<br />
Someone said to me recently, that they loved how honest I was because I didn't say something pat or glossy about where our lives are at right now. That's love. That is recognizing the humanity in another. It may seem tiny, but that's what love is built on. Those tiny acts of acceptance, recognition, of <b>being with</b>, that allow the full range of what it means to be human into our world.<br />
<br />
Love, not fear. Open your heart wide, because there's a lot more ways to say I love you.<br />
<br />
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7857320994707217730.post-84869484650155587732014-02-03T11:58:00.000-05:002014-02-03T11:58:09.977-05:00Nothing is a WasteI originally unloaded this as a post on Facebook, after reading one too many comments on there and twitter about Phillip Seymour Hoffman's death including the phrase "what a waste". This phrase is a big huge trigger for me. So I wrote about it.<br />
<br />
---<br />
<br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;">Back in the 90s, I remember having more than one conversation (or argument) with women who would see a really attractive gay man and say, "what a waste". And I would ask, "Why, exactly??" What is wasted about a gay person? Is it your assumption that they are "opting out of the gene pool"? Are you just lusting and it's a way to offload your aggression/frustration about it? Because what a waste they can't have babies (which we now know isn't even an accurate assumption)? I think the people who would say this truly thought their comments were innocuous. Like that there was nothing wrong with saying it (even that it was said in jest). To my knowledge people don't say this anymore, but I wouldn't be surprised if this context still existed.</span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;">When someone comments on the death of a famous person, or any individual who died "too soon", for reasons of their own cause or by another's hand and says "what a waste of a life", I am filled with a kind of rage I don't know what to do with. What makes for a waste of a life? Are people dying of bad drugs in mental hospitals a waste of a life? Is someone dying at 25 of a terminal disability a waste of a life? Regardless of what a person did in the time they had here, nothing they already did is wasted. They haven't done what they haven't done, so it's impossible to say what could have been. Is the death of a famous person worse than the death of a different drug addict, or an unknown talented person? Is it a waste because of how they died? What about people who die too soon because they eat food that kills them? Do we say that about them? Is the waste about the content, or what hasn't happened yet? Are people projecting their own regrets and sense of fragility of life? </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;">I know that calling gay people "a waste" isn't the same as calling the death of someone who overdosed "a waste", but something in the sentiment triggers for me the same kind of anger, even rage, about the assumptions and judgments we make about people and actions, and class, and race, and disability, and human life.. all kinds of things that are bound up in those few words. </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;">Marilyn Monroe, Amy Winehouse, Kurt Kobain, Janis Joplin, Vincent Van Gogh, countless others known and unknown, just now, P.S.H. -- You may think saying "what a waste of a life" is a way of saying that they were so valuable and you are so disappointed that they are not going to have impact beyond their death (but even that is untrue, just look at the list above). None of them were a waste for having been on this earth, contributed what they have, experienced and loved and been loved. </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17.940000534057617px;">No one is a waste, and everyone is valuable. Underlying the phrase "what a waste" is a very unexamined connotation to the value/lack of value in any given human life. Yes, precisely -- the opposite of what you might think you're trying to express. Thanks for listening and considering.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-7602579576166316842014-01-19T11:48:00.001-05:002014-01-19T11:48:46.974-05:00Concrete<div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">All my steps will be encased in concrete. </div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">The tender steps on earthen moss,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Carrying nothing but my heart,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Carrying only what I need to survive:</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">These too will perish.</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;"><br></div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">My heart will be encased in concrete.</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Hardened by the frosts that consumed it,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">And all the times it was measured, assessed and condemned--</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Reduced to questions, like:</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many successful babies did she produce?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many units of revenue did her time generate for someone rich? </div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many minutes of happiness compared to how many minutes of pain?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many lovers hated her, in the end?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many opportunities did she seize, compared to how many were squandered?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many times did she let her brilliance die, to live in another's room and falter at being open-hearted?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many poems were written about heavy, concrete hearts</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Or political truisms, </div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">And were never shared?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How much did silence make her life small?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">How many broken dreams were scattered to the wind, marring freshly laid concrete?</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;"><br></div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Even the woods weren't safe, </div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Like when we were caught in a landslide and I was hoping and scared about dying,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Even then, as we</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Measured steps, degrees on a map, turns not taken, feelings unshared, </div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Degrees not finished,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Love found and lost or never pursued; or discovered, long ago, to have withered. </div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;"><br></div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">In the end all is cocooned or</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Mummified in an anonymous bank of time,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">That is everywhen and nothing all at once.</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;"><br></div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">This earthen heart, tread upon with so many breaths,</div><div style="font-family: UICTFontTextStyleBody; font-size: 18px; -webkit-text-size-adjust: auto;">Cannot contain the question.</div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-LX4rZolkHIs/UtwB7WIFTzI/AAAAAAAAAHo/uBHFRFUdsKc/s640/blogger-image-1434762116.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-LX4rZolkHIs/UtwB7WIFTzI/AAAAAAAAAHo/uBHFRFUdsKc/s640/blogger-image-1434762116.jpg"></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-80922743045263732462014-01-06T23:33:00.002-05:002014-01-06T23:33:53.352-05:00If You Turned the Volume Up on my BrainThere's a deep reason why I think that functioning labels, severity scales, and dominant definitions of autism, are faulty. The reason extends to why I can embrace the term autistic as a way to describe my experience without hiding it or couching it in ways that separate me from other autistics. The reason is that when I observe a fellow autistic at the museum [crouched on the floor, yelling, covering their ears but wanting to cover their eyes too) and their caregiver is hauling them off from the lobby because all of this is drawing too much attention from passersby, I think to myself, "me too". Because that's the way the museum feels.<br />
<br />
No, I'm not crouched on the ground trying to cover my eyes and ears at the same time or trying to vocalize to match the auditory assault, but my experience of the museum allows me to know that if I took my experience and intensified it more, I would probably have the same reaction. I actually see it as a profound lack of empathy, understanding, and imagination, that an allistic (non-autistic) person doesn't get it. Maybe it's just ignorance, but that's every reason then to keep reading, searching, and trying to really understand what autistic sensory experience really is.<br />
<br />
I've been following <a href="https://medium.com/matter/70c3d64ff221" target="_blank">Intense World Theory</a> for quite a while now. When my friend Michael Forbes Wilcox posted his <a href="http://www.mfw.us/blog/2013/12/17/my-thoughts-on-markrams-intense-world-theory/" target="_blank">own thoughts</a> to a recent follow-on <a href="https://medium.com/matter/d0ef22d74496" target="_blank">article by Maia Szalavitz</a>, I got to thinking more about how a lot of things hang together through a refocus on sensory matters in autism.<br />
<br />
The primary way I have come to understand being autistic is the very embodied experience of my world. I can recall this mattering from a very early age.<br />
<br />
Some basic points in my story, which may or may not be worthy of mentioning in this context (and apologies for any repeated mention):<br />
<br />
<ul>
<li>Pre-natally, my mother worked at a bank and it was robbed while she was 7 months pregnant with me. I have no memory of this, but the details of the incident and imagining the stress that incident must have caused, I don't doubt the experience impacted me, even if it was just a 7-month cortisol spike.</li>
<li>I was colicky and difficult to soothe as baby. I'm told that if they put me an elevator or the car I would fall asleep. Motion helped. </li>
<li>I read early, and taught myself. My mother had no idea I could read until she had me in the seat of a shopping cart and I told her that she couldn't take it out of the parking lot; she asked how I knew that and I replied, "It says it right here [on the handle], 'Do Not Remove From Parking Lot'." This is the stuff of legends</li>
<li>I recall a lot of physical discomfort even from an early age - itchy clothing, pilled bedsheets, the confines of shoes, the tenderness of bare feet, dissonance of 80s radio music, horrible perfume smells of old people, distasteful food textures, loud noises, the wonderful smell of leaded gasoline, the startling strobe effects of light through trees, lining up pennies according to year, organizing crayons according to hue, noticing defects in the oriental rug and tracing the patterns with my eyes over and over, always needing to pee urgently because I couldn't tell before it was urgent, gastrointestinal distress (including mid-meal pain and loose stools I never told anyone about), being overwhelmed at attention paid to me, being so shy, being so afraid that I couldn't bear to make noise for fear of being noticed...</li>
<li>They called me little professor. For a long time I was touted in my family for being so 'mature' (though I think this was a typical point of praise for not just me), in part because my vocabulary and way of speaking was so serious, so intense. I rarely spoke but when I did it was with purpose, thoughtfulness, and with a tone and language that gave my words a kind of adult quality. I think it masked how much I struggled.</li>
<li>I recall in grade 3 how confused I was by the ways girls played, and the politics of friendship. I know it was before then that I felt I was different, and before then that my high levels of anxiety and distress informed the way I experienced the world; but grade 3 remains a retroactive marker of some point at which my memory of deviating from my peers stands out. Before that, I can't say my play or behavior differed so much, but it was some part of the social developmental landscape that changed then -- and I never really quite caught up. School years got more and more insufferable.</li>
</ul>
<div>
I mastered the ability to make a locked bathroom door open and close silently. I learned how to get dishes out of the cupboard without making a noise. I learned which places on the steps made noises and learned to avoid them. I think I did this to not be heard, but also because all of those sounds distressed me.</div>
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I coped with auditory processing disorder, an inability to process speech in noise (every sound is the same volume), often missing what someone said but would pretend that I heard.</div>
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I was teased for the way I looked, the way I dressed, the way I excelled in school, the way I didn't understand social cues (and specific tricks were played on me because of this). I cowered when the substitute teacher would loudly reprimand all of the unruly misbehaving kids but wish they would shut up because I couldn't hear; I would excel in school only through my ability to read copiously and accurately.</div>
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For a long time now, I have liked to wear something on my head. I wear winter hats indoors, bandanas for days and days, loved the years I kept my head shaved because the sensory experience of my head is really important to how grounded and coherent I feel (and covering my head keeps me from scratching my scalp compulsively -- so does keeping my nails short, and I can't have any whites in my nails if I want to tolerate typing).</div>
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My memory for textual information is solid -- where I lack auditory memory, I make up for it in my ability to read through a manual for that new piece of electronics or whatever, and recall the information later. Or to bring up odd and obscure facts about something, or a memory of childhood, because of associated information read, smelled, felt, processed in that visceral way I have come to understand as an autistic, heightened version of the way memory works.</div>
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<div>
I don't look at faces very well. I can feel like faces are too much information. If I'm trying to listen for information, looking at a face will drown out my ability to process the voice. I have learned to mitigate this by looking at cheekbones or hairlines or lips. However I believe I miss a lot of cues, because it's too much information, it always has been. </div>
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<div>
In her book <a href="http://amzn.com/B000FC0WOM" target="_blank">When the Brain Can't Hear</a>, Teri James Bellis talks about a feature of Auditory Processing Disorder that opened up yet another realm -- a right-brain aspect of processing tone of voice that she discovered was affected in her after a car accident. She began to perceive people speaking nastily to her. I know I have always felt highly sensitive to the way people spoke to me. While I can't say for sure whether I am misperceiving tone of voice in people, I do know that with some people, mostly personal relationships, I can really hear an exaggerated melody and meaning that I can interpret as hostile. Even non-personal relationships can be this way. Other people express surprise that I can really bristle at the way <a href="http://onpoint.wbur.org/about-on-point/tom-ashbrook" target="_blank">Tom Ashbrook</a> seems to talk in a sardonic way to some guests or callers -- most people think he's far too agreeable!</div>
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<div>
Looking back (and into now), it's impossible to tell whether my not reading body language and mishearing tone of voice came out of my sensory experiences, but I suspect this. Even now, I find my ability to connect with others fluctuates with the degree of sensory cohesion I experience. </div>
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What I mean is, that I can be more socially present when I am less overwhelmed: when I'm in a quiet environment, when I'm in comfortable clothing, when my body functions aren't nagging on my attention (or out of conscious awareness but still painful or problematic); when I've eaten well, exercised recently or had sex, which can be highly integrating if it's good, when I've felt not taxed.</div>
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But here's the thing -- I learned really early on, I think, that all of these experiences and needs are unusual. Even though no one explicitly gave me the message that it was wrong to feel those things, I instinctively began to hide (and suffer), rather than be a burden or focus of attention. </div>
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It was either a blessing, a curse, or both, that I could basically straightjacket my behavior into Compliant Well-Behaved Girl and still perform well at school enough to not really ever touch special education (I was not sent to gifted program though because of some social/emotional reason, however).</div>
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I spoke recently with a staff member at the <a href="http://aane.org/" target="_blank">Aspergers Association of New England</a> about the profile of girls coming to their services, and for the most part, the Compliant Well-Behaved girls are still flying under the radar and being missed, until probably adolescence when they may have an eating disorder, or self-injure, or have other difficulties that lead them to be identified (or not even then; I was self-injuring, but I remained under the labels of anxiety and depression until 2009). </div>
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<br /></div>
<div>
Just because I was Compliant Well-Behaved Girl, I experienced an intense world. I relate highly and strongly to autistic writers on all parts of the spectrum who talk about their sensory experiences. Some people unacquainted with autistic adults might comment that I'm nothing like the autistics/their autistic child who can't speak, or control their bowel movements, or rock and cover their ears in public spaces... The internet goddesses know how many autistic adults have had to endure battle after battle over how <a href="http://wearelikeyourchild.blogspot.com/" target="_blank">"We Are Like Your Child"</a> and this post may very well draw that kind of battle (and my intense world will cower at it all, which is why I've rarely posted here as the fire got hotter).</div>
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<br /></div>
<div>
But I do relate to autistic writing, especially of a sensory nature, and my strong instinct is that it's all a matter of degree. While on the outside my straightjacketed compliant self seems worlds away from dominant "autism as pity/tragedy" ideas, I firmly believe that if you took my brain and turned the volume even further up, my ways of coping would look very different.</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-667387227440169482013-10-06T23:27:00.004-04:002013-10-06T23:27:50.249-04:00Central Auditory Processing Disorder<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;"><i>I wrote the thing below the video after waking up from a dream in which someone moved my notebook from the seat beside the teacher (who happened to be Barack Obama, just finishing a radio interview). When I mentioned my notebook had been at the seat, the person sitting in it resisted moving so I begrudgingly sat beside them, with someone else to my right. Then I experienced not being able to pay attention to the seminar class. Person to my right kept talking to me. And feeling angry, yet holding back being able to do anything for fear of seeming controlling. The rest spilled out from there. </i></span></div>
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<span style="font-family: verdana, sans-serif;"><i><br /></i></span></div>
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<span style="font-family: verdana, sans-serif;"><i>This doesn't encompass all of the ways I think I am affected by having an Auditory Processing Disorder, but words only go so far. </i></span></div>
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<span style="font-family: verdana, sans-serif;"><i><br /></i></span></div>
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<span style="font-family: verdana, sans-serif;"><i>I also offer up this wonderful short film called "How English Sounds to Non-English Speakers" as a different take. While it's not the intention of the video makers, I feel this captures my experience well. Notice if when you're watching the video, whether your mind or ears are straining to make out the words that aren't English. You can hear some of the words just fine, but then a lot is just garbled. I don't always hear that way, but it happens. And it is oh so taxing.</i></span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/Vt4Dfa4fOEY?feature=player_embedded' frameborder='0'></iframe></div>
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<span style="font-family: verdana, sans-serif;">Auditory Processing Disorder means..</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Trying to listen to people and having their spee jus not soun rye </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Missing the majority of emotional non-verbal information because it's not possible to </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">take in all of the body language and facial expression and still process what they're </span></div>
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<span style="font-family: verdana, sans-serif;">saying</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Not really learning how to express emotion non-verbally because that information never </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">made much sense</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Seeming controlling because where we sit and who sits where is important to being able</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">to hear anybody</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Seeming anti-social when it didn't matter that the maitre'd moved us twice, because </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">afterwards someone seated a loud party of six right near our table</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Going to a loud environment and needing a day to have silence afterward</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
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<span style="font-family: verdana, sans-serif;">Trying to converse, read, write, paint, or think in a loud environment and feeling unable </span></div>
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<span style="font-family: verdana, sans-serif;">to do it</span></div>
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<span style="font-family: verdana, sans-serif;">Just not going places because they are too loud and chaotic, even if not trying to have a </span></div>
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<span style="font-family: verdana, sans-serif;">conversation</span></div>
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<span style="font-family: verdana, sans-serif;">Finding out that those places don't seem loud to other people</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
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<span style="font-family: verdana, sans-serif;">Feeling a physical constriction of the ear canal when uncomfortable noises happen</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Not enjoying 80s music because MIDI sounds are painful</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Knowing what a sine wave sounds like because it hurts</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling "old" at 19 because loud bass coming from the next floor of the dorm is a </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Sensory nightmare that brings on nausea and JUST MAKE IT STOP</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
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<span style="font-family: verdana, sans-serif;">Tolerating simultaneously the noises of the hard drives, air conditioners, dying </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">fluorescent lights, squeaky chairs, squeaky shoes, nails on denim, loud breathing, </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">music through someone's headphones, brakes on a car a block away, sirens, piped in </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">music, plates clanking, keyboards clacking, paper rustling, other conversations, birds </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">outside, tinnitus inside, noises of cars, church bells, telephones ringing too loudly, </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">-- and </span><span style="font-family: verdana, sans-serif;">then people wondering why one direct tiny thing creates a overly sensitive reaction</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
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<span style="font-family: verdana, sans-serif;">Showing up early to get a seat in the front because not sitting in the front means it is </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">impossible to filter out people talking who shouldn't be</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Realizing that five minutes before the event starts no one else is in the front row anyway </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">because no one sits in the front</span></div>
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<span style="font-family: verdana, sans-serif;">Being perceived as the teacher's pet because paying attention requires all the focus, </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">and sitting in the front is too keen for the cool kids.</span></div>
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<span style="font-family: verdana, sans-serif;">Getting older and realizing that being the teachers pet wasn't a bad thing, except it has </span></div>
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<span style="font-family: verdana, sans-serif;">resulted in fear and self-consciousness every time because of all the teasing.</span></div>
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<span style="font-family: verdana, sans-serif;">Not even understanding how much teasing happened because it was not possible to </span></div>
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<span style="font-family: verdana, sans-serif;">hear most of it.</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Writing everything down because reading the text is easier than hearing it, but then </span><span style="font-family: verdana, sans-serif;">having writers cramp AND brain cramp by the end because it was so much effort</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Figuring out just the right amount of effort to apply to be able to hear and process, but </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">not so much that focusing to the end is impossible</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling emotionally broken because upset and excited and angry voices scramble </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Thinking to the point that nothing makes sense</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling cut off from everyone because nothing makes sense</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Asking for an assistive device every time at the movies, and only going to certain movie </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">theaters because other theaters don't have the desired movie in captioning that day </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">which means watching a movie but not understanding it</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">People not understanding why a captioning device would be needed for someone who </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">seems to hear just fine</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Videos online with no captioning and the music is too loud so turning up the volume </span></div>
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<span style="font-family: verdana, sans-serif;">makes </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Automatic captioning on youtube that doesn't work (which is worse than no captioning)</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">turning on some music in order to relax and then getting stuck trying to do the task that </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">was at hand</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Trying to listen to a person while doing a task and missing parts of what they're saying</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Having to ask a person to repeat themselves</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Having to ask a person to repeat themselves</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Having to, sorry, ask a person to repeat themselves</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling embarrassed when it still doesn't make sense</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling like people expect an answer faster than it's possible to process a question and </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">then formulate an answer</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Stumbling through a group conversation because it's not possible to process five other </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">people at once</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling fake because making eye contact while conversing makes listening hard but </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">looking away makes people think they aren't being paid attention to</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling fake after discovering it's possible to trick people by looking at their foreheads or </span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">their lips</span></div>
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<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling not smart with a far above average IQ</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling slow because it takes longer to respond</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">Feeling powerless because some voices are too hard to hear</span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;"><br /></span></div>
<div class="gmail_default" style="background-color: white; color: #222222; font-family: arial; font-size: small;">
<span style="font-family: verdana, sans-serif;">- by Karen. </span></div>
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<span style="font-family: verdana, sans-serif;">You may link to this post, please only republish with permission.</span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-67041195136769725302013-01-21T13:59:00.001-05:002013-01-21T14:03:38.835-05:00Everywhere I Go There I AmI didn't really know what to call this post. I've been a bit "underground" of late, despite recent posts. I duno. Part of it has to do with the new job -- which has been amazing, by the way, and fully accommodating of autistic me, and while I still overcompensate in some ways, I feel the easement of demands on me to be "not me". It's a paradigm shift that I haven't fully processed.<br />
<br />
This post is in response to <a href="http://www.thinkingautismguide.com/2013/01/why-did-amy-sf-lutz-attack.html">some articles</a>, I guess. It's an attempt at my own situated response to what has been ongoing <a href="http://en.wikipedia.org/wiki/Identity_politics">identity politics</a> in the autistic community, which echoes the identity politics I've encountered in other groups (mainly LGBTQQ groups back in the late 90s). I see identity politics as a kind of necessary step a movement goes through as it sorts itself (and its language) out. However, the movement of autistic people is kind of confusing and even more complicated -- rife with power politics -- because some of the claims aren't even being made by autistic people. The policing of who can call themselves autistic is so based within a medical model of illness and within a discourse of 'parent strife' that I feel the very act of trying to engage my own identity is like wandering into a sucking swamp full of mud-dwelling pirhanas.<br />
<br />
Pardon the image.<br />
I'll dwell no longer on the scariness of the prospect of my publishing this post.<br />
<br />
This is who I am. I am many things. Many of them have nothing to do with autism.<br />
<br />
I taught myself to read and yet I can have trouble processing (and therefore remembering) things when they are spoken to me instead of being written down.<br />
<br />
I sometimes hit myself, or stim, when I leave an environment of high anxiety or when I've done something wrong.<br />
<br />
I've also cut myself.<br />
I've also banged my head over and over against things.<br />
I've become non-verbal.<br />
<br />
I was bullied.<br />
I was abused, and this experience is interlaced with my experiences of non-verbalness and dissociation. And spent years trying to figure out feelings I didn't know how to articulate, and still struggle to figure out how to feel legitimate in my needs and feelings, and self-advocate.<br />
<br />
I can talk to someone for a long time about how Foucault influenced the way I think about power.<br />
But in my marriage I struggle with the pragmatics of everyday communication about emotions or what we are going to have for dinner.<br />
<br />
I am measured, by IQ standards as superior in most areas, average in a few (and these feel like deficits)<br />
But I don't really understand and get overwhelmed easily, I have trouble reading an analog clock, when someone explains something to me sometimes I don't understand it. Or I understand it and I can't respond. There are holes in my knowledge so wide that my intellectual peers tend to talk circles around me. (But then, I'm not exactly lamenting that I can't quote Dostoevsky).<br />
I'm great at a lot of tech stuff. But I'm by no means someone who can write code because of object relations problems or something. But I have such extreme ability to pay attention to detail and to systematize the world that I often perform tasks more quickly, with greater accuracy, and more artistic flair than most people.<br />
<br />
And.<br />
I forget to eat<br />
I forget to bathe -- or have such intense sensory aversions to cold or dryness or my hair being staticky or wet or greasy -- that I end up paralyzed in a pit of being unable to self-care about anything. Even if this is brief, it is real.<br />
I can fail to recognize that I have to use the bathroom, until it is very very urgent. I also have IBS. I walk a fine line at times, but I don't have accidents.<br />
<br />
I identify more, often enough, with my non-verbal, or highly sensory-affected contemporaries. I identify with the things they write about their experience. Like <a href="http://carlysvoice.com/home/aboutcarly/">Carly</a> and <a href="http://ollibean.com/?70isWX7T">Amy</a><br />
I can feel I have less in common with people I could get lumped with because of some arbitrary DSM artifact.<br />
<br />
I may exist on the other side of some line of "passing"-"not-passing" or <b>presumed </b>compentence/intelligence spectrum, but I do not see these as real lines, but ones imposed on people. The impositions don't serve us -- <a href="http://ollibean.com/2013/01/19/autistics-grade-autistics/?result=search">on either side</a>.<br />
<br />
But let me be clear. Needing to use AAC and not needing to use AAC makes a real difference in ones experience of the world. Needing to wear a diaper is a different experience than not needing to wear one. Self-harming sometimes is a different experience than constantly doing so -- but the reasons why aren't clear to many people -- but then reasons for self-harm aren't often understood. An attempt at self-regulation is but a guess, in line with <a href="http://en.wikipedia.org/wiki/Marsha_M._Linehan">Linehan's</a> work married to <a href="http://www.ncbi.nlm.nih.gov/pubmed/21191475">Intense World Theory</a>.<br />
<br />
I don't know.<br />
Sometimes, like today, I can feel lost and disorganized, and all these words, in text, on a page, and the fact that I might be able to get some things done at work, doesn't undermine the ways I do all of these things as an autistic person, with an auditory processing disorder, with sometimes very intense sensory experiences, with a limited pragmatic language ability, with a highly intense emotional world.<br />
<br />
My heart breaks when people fight identity politics in autism<br />
And forget what that we ALL deserve to fight for is respect and our own humanity.<br />
<br />
Peace.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-48193440852896070632012-12-16T13:09:00.001-05:002012-12-16T13:09:30.517-05:00On Autistic, Mentally Ill, Godless EvilI'm struck by how much dialogue and debate here (in the US, where I'm not originally from) spills into illogical and irresponsible use of religion, the constitution, and even the value of letting the real emotions of trauma *be*. Processing events of magnitude (even when they aren't on the news, even when they are and we aren't directly experiencing the trauma) is a process. All the stuff people are saying is necessary. It is heinous, what Huckabee said. But it was said because at the very least he, a person in power who has an audience to say these things publicly, said them, believes them, and then others agree. So it needed to be said and now it needs to be engaged with, and some engagement will change minds, a lot won't, and a lot of hurt will be dredged up. A lot of old wounds from very deep important philosophical debates emerge from tragedy. Fine. Do it.<br />
<br />
But I'm very disturbed about how autism coming up as a "reason" and how the reaction of many autism people(?) (not so much self-advocates) are blaming mental illness. And people who have so called mental illnesses or are on psych mess or whatever, are not blaming autistic people, but either way, it's disturbing to me that people need these scapegoats in order to feel safer. Dehumanizing the criminal by lumping them in with the majority of non criminals who have that label, effectively dehumanizes all of us who have that label. <br />
<br />
When a heinous thing happens its not about autism, mental illness, a lack of god. None of these things actually explain what a person experienced that led to this. <br />
<br />
the best thing anyone can do, as uncomfortable as this is, is to process the fact that we are connected and process the contradiction of that connection as is it bound up with the individual decisions each person makes. Community and individual actions are inextricable. Do not attempt to render the trauma as good vs evil. what if those concepts were removed? <br />
<br />
What if a broken system had less to do with the absence of god in them and more to do with the presence of god in them? What if the very reasons people are alienated from community and are suffering further is so bound up a dominant view of God/Satan/good/evil?<br />
<br />
What if the way to deal with suffering is to go to it, not alienate it? <br />
What if it were the case that it is only possible for a person to become separate from the web of community when the community breaks them off and convinces them (and they themselves choose to believe) that they don't deserve the caring and regard of humanity? <br />
<br />
What happens when, instead of just being victim to a narrative of ones life in which they are a loser who doesn't measure up, a human being who has been traumatized by life and feels angry about that (for whatever reason, autism label, mental label, or other) -- what happens when that person instead chooses to not be a victim but has no outlet for anger?<br />
<br />
Anyone in a vacuum can become distorted in thinking.<br />
Germany was systematically cut off from the outside world, fed propaganda, and we Jews became a scapegoat for all kinds of problems, and genocide resulted. <br />
<br />
Think about your own vacuums. Those distortions may be privilege in disguise. Or the seeds of your own suffering. <br />
<br />
As uncomfortable as it is to process these traumatic events, it can't be done by the dehumanization of the perpetrator(s). It only allows the possibility for the same thing to repeat itself, because we fail over and over to understand the roots of suffering.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-16213621862966600162012-12-10T12:23:00.000-05:002012-12-16T13:27:46.383-05:00Sensory IssuesThe abstract for <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518049/">Intense World syndrome</a> is is so incredibly validating to me I just about cried. I probably teared up. I don't think an abstract has ever made me cry before. The thought was, "finally".<br />
<br />
It's not about fidgeting/repetitive behaviour/stimming/flapping/twirling/whatever.<br />
It's not about lack of making eye contact.<br />
It's not lacking emotional empathy.<br />
<br />
In my estimation, based a lot on what autistic people have written about themselves, many of the common external signs of autism result from an overwhelmed sensory system.<br />
<br />
Not all of autistic stuff is sensory processing, but I venture a guess that a lot of it is. And I venture to say that at least a few people who might sit in the camp of mourning the loss of Asperger's Syndrome might also argue that they aren't like the people who had an autism dx rather than an Aspergers dx. However I often identify strongly in the other direction. <br />
<br />
- since autism 'lines' [of severity] can't be drawn around IQ, nor around functioning (google some critiques of the functioning trope to understand that), I propose those lines aren't really possible to draw in any meaningful way.<br />
<br />
- sensory processing is a thing we all do, is a neurological and nervous system (or whole system) kind of thing. If a person has a divergent system for processing external information, so much of that is a 'fish in water' kind of experience. My sensory issues weren't at all apparent to me. Until I got tested by an audiologist and had a consult with an OT. <br />
<br />
- this is purely speculative, but based on sensory experiences communicated by my peers who maybe also get labeled as more severe than me or whatever -- may other-verbal, or do more stim stuff or self-injury or have more meltdowns and in different ways than me -- that I would be doing those same things if my sensory integration issues had the volume turned up on them. In other words, I can handle some time in a grocery store. But for someone who doesn't handle that as well, I think much of that has to do with being more affected than me by the fluorescent lights or the noises or the smells, temperatures, etc. Even if the experiences aren't exactly the same, there is the same root at play. Sensory. Not behavioral. <br />
<br />
- communication frustration is a huge part of why I may self-injure (severe or not, overt or covert), why I may yell, why I may fail to respond to the person I'm talking with. Feeling misunderstood and stymied in communication is so terribly frustrating. I can imagine that if I more frequently got into non-verbal spaces, or was always that way (because verbal speech production and cognitive understanding are not the same thing), I would be even MORE frustrated. I would be less understood. Fewer people would even be making the effort to listen. Especially if those communications weren't even verbal in the traditional way. (I could ASL as a legitimate Lternative to speech, but AAC is probably even more viable, and for in either case where motor skills affect the use of these, assistance with producing communication is a highly viable path to someone having agency with their voice)<br />
<br />
- so. The world is a disorganized, highly intense place. What if the emotional empathy Rachel Cohen-Rottenberg talks about is so very present, but the cognitive production of an empathic response being interfered with (by internal sensory and communication challenges) as well as outside disempowerment) -- <br />
<br />
Then we are less broken than imagined.<br />
<br />
and all those parents claiming that kids who are nonverbal and hitting themselves or whatever are so different than those of us who can write, or talk, or have a cogent argument that challenges their -- or rather discomfort with another way of being -- there is no possible chance of helping. <br />
<br />
But if there is a way to understand about sensory issues and communication (organization, and the connection between nervous system integration and cognitive organization) -- it may be possible to address some of the side effects that allistic (non-autistic) people cite as non-empathy or the behaviors that manifest in a lack of social support for autistic people.<br />
<br />
Having sensory integration issues and communication issues (that are tied to those sensory issues) is difficult for me, and if the volume were turned up on those issues I think I would have the manifestations of what DSM V calls more severe/lower functioning. <br />
<br />
Therefore, the DSM change makes sense, insofar as it has included sensory issues in the realm of ASD. That connection was sorely missing before. I think we need to explore (and research the heck out of) what these sensory systems are doing in autism, how these sensory differences can have multiple causation factors including environmental and genetic, and take those of us with perhaps less severe manifestations of sensory issues and challenge/push the sensory system, in research settings, and study what happens. Study what that does to cognitive processing. Understand better how gut and immunity and cognition and communication and sensory integration aren't all separate. <br />
<br />
This post is long and not well written or cited or linked or anything. Don't shoot me (that's what the next post will be about). It's just a mash of my thoughts on why its okay there's no Aspergers anymore. Those people who didn't get the privilege of an Aspergers label? They have been more disadvantaged than me, in a lot of ways because of systemic abuse and other barriers, but I'm not so different from them. I can feel that in all the circuits of my highly empathic nervous system.Anonymoushttp://www.blogger.com/profile/00132593380913788450noreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-45237266339404568242012-10-24T15:23:00.002-04:002012-12-13T19:16:54.955-05:00On Overload and Retail (Part 2?)I wrote here a long while ago, and it was about my job. Here's another post about my job. I'm doing this instead of other things I guess I need to do, like buying cat food and cleaning up, but maybe I just needed a down day after everything going on the last few days (work, informational interview about a new career, other important conversations with my husband..)<br />
<br />
So, I work retail. I mainly do cashiering, but I also do sales and a bit of stocking, or I work in shipping and receiving. The majority of my days at work are in front of customers, however, servicing the line of people checking out.<br />
<br />
It's become an increasing issue for me that when I leave work and get home after a full 8 hour day of Customer Service (CS), I am very overloaded. There are some mitigating factors, like if I've remembered to take anxiety med, if I have remembered my brimmed hat (for fluorescent lights), and how well I've eaten. Food plays a big part in how I function. So these factors can amplify (or not) the experiences I describe below.<br />
<br />
I'm in general, not a very verbal person. Some people are surprised by that, because I can certainly have modes where I talk and talk and talk. The talkative mode(s) are often due to high anxiety or even sense of ungroundedness which leads me to think a bunch of things at once and have a hard time focusing. In these states I can often not do a very good job of matching the mood around me; so people might be stressed, or subdued, or whatever, and I'm bouncing happy. I can imagine this being annoying at times.<br />
<br />
So as a not particularly verbal person, and one who, frankly, is depressive in general, when I work my job I have to put a great deal of effort towards the task of serving customers.<br />
<br />
<h3>
Smile</h3>
Sometimes I just don't feel like smiling. I can watch co-workers do their job without any particular amount of projected joy, even with some degree of outward disinterest; but I can't. If I'm not putting forward that positive, energetic persona, I feel utterly incapable at my job.<br />
<br />
So I have something akin to a verbal smile. It's not that I'm always smiling outright, but there's this stance of smiling in the process of talking to someone that is possible even if I feel like crawling into a corner and covering myself with a blanket. It is something I picked up over time, I think, from listening to other people speak. I have learned it's possible to make certain inflections sound genuine even if what I feel inside is completely opposed to the happy, energetic persona I have to project.<br />
<br />
<h3>
Stick to the Script</h3>
<div>
"Hi, how are you today?"</div>
<div>
"Did you find everything okay?"</div>
<div>
"Are you a member?" "Okay, great, can I have your phone number?"</div>
<div>
"Nick?" "Thank you" </div>
<div>
"Your total is 375.69"</div>
<div>
"Is that debit or credit?"</div>
<div>
"May I see the card to verify your signature?"</div>
<div>
"Just hit the green button to confirm the amount"</div>
<div>
"Thank you, have a great day"</div>
<div>
<br /></div>
<div>
"Thank you for calling _____, Karen speaking, how may I direct your call?"</div>
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<br /></div>
<div>
I have scripts for all the different situations -- returns, selling memberships, special orders, phone calls, complaints, inquiries, bartering, etc.<br />
<br /></div>
<h3>
Overload Heaven</h3>
<div>
It's hard to describe what it's like in the fifth hour of the day, after doing this with so many people. I would love to know how many transactions I process on an average day at work. how many times I have to go through the same thing.</div>
<div>
<br /></div>
<div>
Then, on a Saturday, it's not just the fact that the volume of customers goes up and I basically go non-stop (and have to turn someone back to the line in order to take breaks) -- the level of noise in the store goes up TENFOLD. The number of cashiers doubles at least. During a sale, moreso. The level of noise affects my diagnosed Central Auditory Processing Disorder. I have to work harder to hear through the noise, and so my nervous system is on overdrive. So on a quiet Monday, I can basically deal with the radio background noise, and a bit of other ambient noise, sometimes another cashier's voice, but only one. On a Saturday, I may have a customer and cashier pair speaking on either side of me, the person I have to hear, and then a hundred other voices and children crying, bicycle bells dinging (by children), paper bags crinkling, beeps, printers printing, the smells of perfume and garlic and that new clothing smell. I do my best to dress comfortably so that I don't feel my clothes all day, and it took me a long time to find good shoes so that my body wouldn't hurt after a day on my feet.</div>
<div>
<br /></div>
<div>
Some of these things affect everyone, in the sense that it's always harder to hear in a noisy environment. I wish I could simulate what it sounds like to me when English turns into a mess (I can't hear words well or hang onto the words) because of my auditory issues.</div>
<div>
<br /></div>
<div>
In many other circumstances besides work, I think the equivalent level of stress on my system would shut me down. If I was in a noisy environment like that for hours on end with my husband and some other people, I probably would at some point just say I need to leave. But here I don't, or I can't, and so I stick it out. An interesting thing happens. I kind of go on autopilot, and push through the overload. </div>
<div>
<br /></div>
<div>
I still use my scripts, and everything goes fine. But I feel a pressure at the front of my skull. I feel a fatigue underneath the verbal smile, and I am less and less inclined to do anything but the bare minimum of what I have to say. If there are enough other cashiers, I will find a task to do that doesn't involve talking, like go take a full rack of hangers back to the warehouse. Or I'll admit to even just ducking into the back room and turning my head upside down (when this happens), taking long breaths, and just hiding for a few moments.<br />
<br />
<br /></div>
<h3>
Verbal Load</h3>
<div>
By the time I get home from work, I'm not in any shape to talk to my husband. I need a serious break from listening and speaking. The listening may be just as important as the speaking part, here. This really affects our relationship in negative ways; if we end up getting into something and I'm still trying to recover from the fallout of working, I may invariably be unresponsive, or just not really engage, or worse, be irritable and end up having a fight because I can't really glean all the subtext of what is happening in our interaction. CS is straightforward; and even if someone is difficult or especially taxing, chances are I won't see them again, or only seldom. </div>
<div>
<br /></div>
<div>
In my marriage, it's important to me to be there with my husband but I feel like I've spent all my <a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/">spoons</a>. This happens over and over, and it's taking its toll on our relationship.</div>
<div>
<br /></div>
<div>
So while I'm lauded at work for being great, it comes at a price. A kind of invisible price.</div>
<div>
<br /></div>
<div>
I've considered asking for an accommodation like one extra ten minute break only if needed (Breaks PRN!), but haven't been able to really convince myself that this would be okay. Or that if I really need it.</div>
<div>
<br /></div>
<div>
I've <a href="http://spectrumvisible.blogspot.com/2012/01/challenge-of-social-accommodations-in.html">written about accommodations before</a>; it's a tricky thing, because, even like things with the hat, invisible disabilities mean that other people don't necessarily understand the reason for the accommodation and can perceive preferential treatment, and there's no graceful way of making that happen without "coming out" over and over, or being horribly cryptic about "medical reasons". </div>
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<div>
This video is a decent sensory comparison for how it can feel.</div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7857320994707217730.post-40483364250353479542012-08-11T17:21:00.002-04:002012-08-11T17:21:49.298-04:00emergingSo, I figure that I'm slowly coming out of, not a closet, exactly, but out of some silence that I've been friends with all my life. There's a safety in silence. There's a safety in never getting angry (on the outside), but it eventually fucks over the psyche in a way I can't live with anymore.<br />
<br />
So every day, when I go out in the world and figure out some way to be, it's getting less and less acceptable to use silence as a veil, silence as a foil, silence as a way to stay on the sidelines and avoid getting egged.<br />
<br />
I started with being open at work. With friends. Posting stuff that subtly or not, indicates, I care about this autism stuff. I've followed and made friends with people who are being very vocal about their views. They are views I mostly agree with.<br />
<br />
I'm seeing my friends get egged. They are getting hurt. It's not only okay to be autistic, it's like, a legitimate voice. Not more legitimate on the circumference of the world or astrophysics or whatever. But on autism, just as legitimate. In fact MORE legitimate on being autistic. More authoritative. Really! (And apparently, what <a href="http://opinionator.blogs.nytimes.com/2012/08/08/hear-all-ye-people-hearken-o-earth/">font we choose makes a difference</a>)<br />
<br />
Because rights are being violated, because the discourse continues to be controlled by people who just don't understand the violence they're doing, and because there is so. much. suffering. to bear witness to and speak to and rail against and try to make a better world full of understanding and kumbaya.<br />
<br />
I'm a full-fledged idealist. My heart breaks constantly. I believe in love. Fine.<br />
I may never be a badass but I'm going to aspire to be one.<br />
<br />
Because I want to and need to <a href="http://timetolisten.blogspot.com/2012/08/there-is-blood-on-your-hands.html">speak truth to oppression</a><br />
I want to and need to find <a href="http://www.disabilityandrepresentation.com/">my people</a> and support them in their work<br />
And I want to step out of silence and into strong voice full of all that boils deep inside me to speak about suffering, understanding, and change.<br />
<br />
Peace,<br />
KUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-58099450971033118482012-06-09T22:06:00.000-04:002012-06-09T22:06:03.648-04:00Just an update. Overload.Hm. Haven't postedin a while. I'm typing from mobile because I have put myself to bed early.
I'm overloaded. We went to a movie tonight at the IMAX and waiting in line was a sensory nightmare. I almost considered asking to use the alternate (accessible) entrance because it would be less sensory overload. But I stuck it out. The thing about sticking it out though is that I pay for it later.
I've been kind of sad lately because of being more aware of my difficulties connecting with others. Like, kind of lonely. Kind of longing for better connections and an easier time making plans.
I've also been struggling a fair bit with housework.
Two things I'm thinking about pursuing. One is neuropsych testing. I want to find out about learning disabilities we suspect are there. And also maybe also try to get an EEG to see if I'm having some kind of seizure activity.
But positives include: doing a lot of physical exercise. I'm kind of banged up from backpacking, rock climbing, and canoeing but it all feels really good for my body.
That's an update. Nothing deep really but that's okay :)Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7857320994707217730.post-22548875987481160512012-01-29T10:01:00.002-05:002012-01-29T10:01:27.560-05:00The Challenge of Social Accommodations in the WorkplaceThe Autism Women's Network posted <a href="http://http//www.marketwatch.com/story/pennsylvania-dpw-releases-nations-most-comprehensive-autism-needs-assessment-2012-01-26">this link</a> today citing the stat that two thirds of autistic adults are unemployed and underemployed.<br />
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I love my job in retail; I'm in a supportive environment and I enjoy working with my colleagues and with customers. There are challenges for me there but I have stayed there for a year and a half because it works for me in some ways. For instance the culture there supports work life balance, encourages my outdoor activities, but it also has a schedule that changes week to week (ie no routine) and it pays much less than my skills and intelligence would imply I could be making. So with all due respect and love to my job and the people there, I'm seriously underemployed.<br />
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It's a mixed bag; I find the job to be less stimulating intellectually, and to be more challenging on my sensory systems and social skills than some full-time desk jobs might be. It is both less challenging on my skills (though a side effect of this is I've become a kind of go-to resource for operational concerns because I have such a strength for detail), but very challenging in terms of my ability to socialize well with co-workers and customers.<br />
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I can sometimes develop a very easy and positive rapport with people, but other times it's all awkwardness and lack of eye contact. I know it matters less with customers; some cashiers are friendly and others less so, and any given interaction with a customer averages 60 seconds or so, which means its mostly low impact if I'm benignly weird. Less so with co-workers. It is hard to do small talk; break room conversations can be taxing, leaving me feeling like I haven't had a break. Navigating the scheduling, interpersonal and teamwork aspects of the job can feel like walking a tightrope; I feel like I always have enough social capital, because I work so hard to be positive, and liked, and not make mistakes. This takes a lot of energy.<br />
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So that article linked above is capturing something about my life. One sentence in that article captured my attention enough to write this post, however; and it is right in line with how daunted I feel at the prospect of becoming less under-employed. The study found that social skills training was at the top of the list for both adults and care-givers. It presents the un(der)employment stat as follows:<br />
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In addition, it was found that more than two-thirds of adults with autism are unemployed or underemployed, when in fact these individuals are fully capable of working, but lack the social skills to be able to hold or find employment. </blockquote>
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Other autists have some great writing on the social model of disability as it relates to autism. I encourage you to seek that out. I am thinking about it though, and it seems that there are real barriers to full employment that can't be explained using the deficit model.<br />
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For one, jobs aren't very flexible when it comes to having a neurological difference that can result in uneven and inconsistent skills. Until a (9-5) job is capable of really accommodating an invisible disability that is inconsistently present, it will be inaccessible to many.<br />
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Some days/weeks I have no problem talking on the phone, but sometimes it's a challenge. Sometimes I'm capable of functioning well in time management, other times I'd need support. I'd need discrete alone times, more things in writing, the ability to work from home... Many many things could be accommodated. Other things seems trickier. One can't, for instance, reschedule meetings last minute frequently, without some social or political repercussions. One can't necessarily disappear for a week. Even this, however -- many employees have kids, and those kids get sick, or whatever, and work needs to accommodate these things. It's even in law In some places that if one has a sick relative, one can get paid leave to take care of them. There is also short-term disability when a person themselves needs time off. However none of these actually seem to fit the situation of sensory overload, for instance. It most closely is like the last minute doctors appointment for a child that makes you leave work early. Except in this case there is no "legitimate" reason. The reason it isn't legitimate is that people don't understand sensory overload. Sensory overload may be unusual, but it's understandable, and the lack of understanding has nothing to do with a deficit in the person experiencing it.<br />
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In my experience in both graduate school and employment, the question of social accommodation is the hardest one to answer. As much as we want to accommodate and educate, the overriding of social convention is a gargantuan challenge, and this anthroplogophile asks, for example, what aspects of human non-verbal interaction are cultural and amenable, and what might be more codified into our instincts (putting aside the question, of course, of whether we even have purely animal instincts anymore).
If Sally doesn't make eye contact and Ann may be offended or not trust Sally, in the social model, Ann needs to be assisted in understanding that Sally is trustworthy, and there are good (non-derisive) reasons for not looking her in the eye. It shouldn't matter how ingrained someone might feel about lack of eye-contact = trustworthiness (and in fact, troll TED for a great talk on how liars make more eye contact than usual), they should be able to give a person making no eye contact, the benefit of the doubt, especially when they are told that eye contact is challenging.<br />
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Eye contact does more than just convey a person's intent though; eye contact allows me to gain more non-verbal information (secret: I'm often not looking at eyes, which is both easier and I'm told more acceptable than direct eye contact anyway). So I gain something by working on my eye-contact-with-people's-faces skill as well as monitoring-my-own-face skill. There's no question about that. But unless I get some leeway and understanding as I become more effective, I'll be punished out of the social game long before I gain the skills.<br />
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I'm sorry this next point/thought is less rigorous and well formed than I'd like...
One thought/connection I've had recently is delicate but relevant to autism. I think. It's not an analogy.<br />
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Some individuals with motor control differences can sometimes face discrimination because typical people seem to rely on body signals those individuals can't give in the same way. What then happens is the typical person might express derision, mistrust or dismiss the person with atypical motor function, but more often, I suspect, engage in a very subtle, possibly unconscious withdrawal of social contact/support because their neurotypical instinct is that the untypical person can't be read easily. The typical person possibly feels a lack of control. They need to do extra work to get information they usually get from all the culturally codified mannerisms and non-verbals most of us take for granted.<br />
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It is a privilege to be relaxed and confident that one's way of gesticulating, holding a facial expression, or using one's eyes will be received in congruence with the meaning of those expressions. When one's expressiveness is not received in congruence with what is meant, it is a real disadvantage.<br />
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A difference between having motor control a-typicality and say, being labelled with autistic social skills, is that one is thought to be unchangeable and the other is thought to be amenable to social skills training. Do we really know this? This issue is so complex. One thing I do know; I am not lazy because my facial expression doesn't match how I intend to present my thoughts/feelings. In any case, as an autistic person I don't have the privilege of just relaxing and assuming my non-verbals will be received in congruity with how I intend them.<br />
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I have made this connection as well to the immigrant experience in some cases. If you come from a place where some of the non-verbals are different (how you nod yes or maybe, for example), you might be nodding yes and natives of your new country think you are indifferent to them. I've witnessed this kind of difference wreaking havoc with workplace relationships.<br />
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Non-verbal differences can be a kind of invisible barrier that MAY require the non-typical person to understand and gain skills (not always), but definitely requires typical people to do some work to question their own expectations and learn to read a person differently. To live with their discomfort at not getting all the information they expect from a person's body, assuming good intentions, and providing feedback, in non-derisive ways, how they are reading things as they are. And be open to a different interpretation than their initial spit-second reaction. To engage in meta-communication, like 'This is what I thought you meant, am I right? Please correct me if I'm wrong...' Until both parties can work on that two way meta-communication, there will be social barriers in the workplace (and well, everywhere!).<br />
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One can't circumvent all bad reactions to unusual needs, or unordinary social gaffes, which ultimately hurt ones career. The higher level one goes in careers, the more those can have dire consequence. In my experience it has been much healthier for me to work below my potential where those failures happen with less consequence to my livelihood. Unfortunately, this leads to depression and social isolation. I am, indeed, angry at myself for never taking the risk to do something meaningful, get outside my comfort zone, risk failure for the bigger rewards. Except for, well, I'm always living outside my comfort zone.<br />
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And in case you aren't familiar with the <a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/">Spoon Theory of Illness/Disability</a>, read it.<br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7857320994707217730.post-60085702707261961232011-12-13T11:44:00.003-05:002011-12-14T09:01:52.739-05:00The Crossroads is a Field<a href="http://declanod.files.wordpress.com/2011/08/crookedpath2dwp.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span class="Apple-style-span" style="color: #444444; font-family: inherit;"><img border="0" height="212" src="http://declanod.files.wordpress.com/2011/08/crookedpath2dwp.jpg" width="320" /></span></a><span class="Apple-style-span" style="color: #444444; font-family: inherit;">I knew a guy growing up who was kind of on the margins. I remember being friends with him but he and I didn't particularly stick together, if I remember correctly. I met him one day years later; we happened to take the same public bus home from school. So we started chatting, and both got off the bus at the same stop, and kept talking. The way home from the bus started off through a field of weeds. The sidewalk ended and he began to trudge through the thickest part of the grass. Of course he'd done this trek many times, but I pointed out the well-worn trail made by thousands of feet. His response: "I prefer to make my own path".</span><br />
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<span class="Apple-style-span" style="color: #444444; font-family: inherit;">That response stuck with me. </span><br />
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<span class="Apple-style-span" style="color: #444444; font-family: inherit;">I've been in a bit of hibernation. I have let this blog go fallow. I stopped tweeting. I suppose this is in keeping with the deep work I'm currently doing. I'm in <a href="http://en.wikipedia.org/wiki/Dialectical_behavior_therapy">DBT</a> to work on skills I believe will help me. I am tapering off medication that I have been taking since 2005 and which has dulled my senses and my feelings. I am mourning lost potential, ruminating on current challenges, and so uncertain of my future that I feel I could grind my teeth off in a single fit of war with the unknown. </span><br />
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<span class="Apple-style-span" style="color: #444444; font-family: inherit;">[I think I've been reticent to post blogs and tweets and even facebook updates because I feel so opposite of "hey look at me!" I don't want to be seen, I don't want to stick my fingers into the jarring machine of other peoples' attention. As the holidays approach, which I associate with one of my first conscious experiences of being marginal (Christmas), people are all wanting to connect; have potlucks, have parties, send cards; and I experience more soundly how much I don't feel in sync with what everyone else is presumably craving: togetherness and chestnuts roasting on an open fire. My winter holiday will be in mid-January, and I will retreat to the mountains, hike deep into the woods where there is no running water and no people.]</span><br />
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<span class="Apple-style-span" style="color: #444444; font-family: inherit;">In the midst of all this holiday alienation and personal exegesis, my dear friend-I-met-only-once-in-person-but-we've-known-each-other's-souls-like-forever, <a href="http://autismwomensnetwork.org/">Sharon da Vanport</a>, shared <a href="http://www.journeyswithautism.com/2011/12/02/the-path-that-chose-me/">Rachel Cohen-Rottenberg's Dec 2 post.</a> Her writing, as always, is such a strong reflection of what I'm struggling with, despairing in, yearning for. </span><br />
<span class="Apple-style-span" style="color: #444444; font-family: inherit;"><br /></span><br />
<a href="http://www.breakoutofthebox.com/proactive.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><span class="Apple-style-span" style="color: #444444; font-family: inherit;"><img border="0" src="http://www.breakoutofthebox.com/proactive.jpg" /></span></a><span class="Apple-style-span" style="color: #444444; font-family: inherit;">The path of least resistance seems so often the path of conformity. It's supposedly easier to fit in and ascribe to common notions of power and prestige. For those not living on the margins, I guess that could be true. But if my very being is on the margins, the path of least resistance isn't conformity. To take the path of conformity means to contort myself into ways of being that don't work. It means disavowing my real experience in favor of an illusion that would make other people more comfortable. </span><br />
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<span class="Apple-style-span" style="color: #444444; font-family: inherit;">I will never feel at home in that world.</span><br />
<span class="Apple-style-span" style="color: #444444; font-family: inherit;"><br /></span><br />
<span class="Apple-style-span" style="color: #444444; font-family: inherit;">Rachel writes, "<span class="Apple-style-span" style="background-color: white; line-height: 19px;">The only time I didn’t feel on the margins was when I happened to cross paths for awhile with other people on the margins. Then the world felt like home". I have also had this experience. It wasn't like those people had to be marginal in ways that I was marginal. It just had to be a mutual recognition of how, whether that experience made us sad or scared or angry, meek (as I was) or hard around the edges (as I was often drawn to), being marginalized meant that we shared a knowledge of each other that made us feel less alone. We found power together, in mutual recognition of that experience -- of standing outside the collective illusion that everyone else shared. </span></span><br />
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<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="background-color: white; color: #444444; line-height: 19px;">I'm less concerned with how false the collective illusion is. In some sense it isn't an illusion, and it isn't as collective as I'd imagined it. It is, however, a well-worn path. It isn't questioned. It becomes Reality because of some collective agreement, and the margins become a blurry no-man's land, they become unknowable and the people in the margins become unknowable, their silence being a function of living outside the collective dream.</span></span><br />
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<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="background-color: white; color: #444444; line-height: 19px;">Choosing to walk the path of marginal means working to unblur those lines, and in doing so, point out that the center isn't really the center, and the margins are all over the place.</span></span><br />
<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="background-color: white; color: #444444; line-height: 19px;"><br /></span></span><br />
<span class="Apple-style-span" style="color: #444444;">Rachel is doing something so important that it prompted me to post myself. When I read her work I feel my own potentiality stirring. I see her blazing trails and I feel compelled to speak because the more people who stop being silent the more the voices from the margins speak, the more we create a world in which we exist, the more the world isn't a simple place consisting of "inside" and "outside", of center and margin, but it becomes a multi-faceted world of many margins. So many margins that the picture is beautiful.</span><br />
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<span class="Apple-style-span" style="color: #444444;">I have always known who my people are, and I’ve fled from them, afraid that if I threw in my lot with them, I’d have to give up this mad craving for acceptance, for approval, for the mythic safety of “normalcy,” for the dream of what people once led me to believe was my destiny. And that fear has cost me dearly — physically, mentally, ethically, and spiritually. I’m only beginning to understand just how dearly.</span></blockquote>
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<span class="Apple-style-span" style="color: #444444;">It’s an awful thing to be at war with oneself. It’s an awful thing to keep fleeing and arriving at the same place, over and over. I can’t do it anymore. I won’t do it anymore.</span><br />
<span class="Apple-style-span" style="color: #444444;">There is no shame in being on the margins. There is only shame in believing that I am too important to be there. -- <a href="http://www.journeyswithautism.com/2011/12/02/the-path-that-chose-me/">Rachel Cohen-Rottenberg</a></span></blockquote>
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<span class="Apple-style-span" style="color: #444444;">Rachel inspired me to look up some Audre Lorde, who was the first (along with Ani Difranco) to teach me how much power is possible with poetry and how much damage fear and silence can make, and how many people, when I reach into that darkness, are there waiting to hold my hand.</span><br />
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<span class="Apple-style-span" style="color: #444444;">Possibility is neither forever nor instant. It is also not easy to sustain belief in its efficacy. We can sometimes work long and hard to establish one beachhead of real resistance to the deaths we are expected to live, only to have that beachhead assaulted or threatened by canards we have been socialized to fear, or by the withdrawal of those approvals that we have been warned to seek for safety. We see ourselves diminished or softened by the falsely benign accusations of childishness, of non-universality, of self-centeredness, of sensuality. And who asks the question: am I altering your aura, your ideas, your dreams, or am I merely moving you to temporary and reactive action? (Even the latter is no mean task, but one that must be rather seen within the context of a true alteration of the texture of our lives.)</span></blockquote>
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<span class="Apple-style-span" style="color: #444444;">The white fathers told us, I think therefore I am; and the black mothers in each of us-the poet-whispers in our dreams, I feel therefore I can be free. --<a href="http://www.english-e-corner.com/comparativeCulture/etexts/more/feminist_reader/poetryisnotaluxury.html"> Audre Lorde</a></span></blockquote>
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<span class="Apple-style-span" style="color: #444444;">If you are on the margin, however silent or small or alone you feel, know that you are really none of these.</span><br />
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<span class="Apple-style-span" style="color: #444444;">There are voices in the margins whispering poetry. It is the verse of possibility on the verge of the truth that none of us is really free, or powerful, or loved, until we all are.</span><br />
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<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7857320994707217730.post-24128439414865751782011-09-25T10:58:00.001-04:002011-09-25T10:58:28.766-04:00just breatheI'm kind of overwhelmed. I'm working a lot. This is good, but it means I'm neglecting a whole lot of other things, like basic housework. Cooking is challenging me because I don't know what to make with stuff I have. I feel agoraphobic to go to the store for milk or whatever. I have multiple things that are just overdue, phonecalls I need to return, stuff like that.<br />
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All I wanna do is sleep, hide, escape. That won't help with getting anything done.<br />
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Then, yesterday someone said something to me at work that was upsetting. But as usual, I didn't have any reaction at the time, that indicated at all that what the person said was not okay. So now I'm left with the words echoing in my head, and no way to be able to say that it wasn't okay.<br />
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So I'll just keep breathing, and maybe find the strength/focus/will/courage to get shit done and keep on going.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7857320994707217730.post-44149728565717945312011-09-17T22:53:00.001-04:002011-09-17T22:53:24.726-04:00Disablism Among AutistsI'm caught between notions of inclusion/neurodiversity and notions of how difficult it is to change some responses to socially untypical behaviors.<br />
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Or to put it less delicately: Some people are hard to be around. I can be hard to be around. The reasons for this are so numerous it's useless to even try. This being 'hard to be around', at my core, is not okay. It's not okay to feel frustrated about and/or avoid a person.<br />
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There are people who I have a hard time with. Some of them even want to be my friend. But so, how do I respect those limits but not just be like every other asshole who doesn't want to be around person X?<br />
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There are so many hurting and lonely people, who, it seems to me, could maybe change some things but it's not like they're assholes they're just missing some part, and maybe they don't need to change, they certainly don't have to change, but I can see that something about them is making a giant barrier between them and other people. Like, with body odor -- people avoid a person with body odor, but it's so delicate a topic and since no one is close enough to have a trust-bond to tell them, they just never get told.<br />
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There are so many versions of body odor, many of them behavioral, and I am at a loss as to how to deal with my psychic pain when I find myself recoiling and unable to tell the person why I am doing so. It's not like I owe them a reason, but I sense that for some people, whether ignorant, mildly aware, or fully aware of what distances them from others, I know there is not enough trust between us for me to share even an inkling of what I'm thinking about them. I feel I'm a bad person. I know I'm not, but I can't figure out how to deal with my discomfort.<br />
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As much as this is torturing me, I'm so aware of how problematic the terms high and low and functioning are, and there are people, other autists, who I associate with that use those terms, and in ways where they are saying they want to have social experiences with some kinds of persons and not others, and this feels wrong. But I know what they mean. And in all of that I glimpse the broader problem in a new way, how typical people can justify disablism, justify trying to change/cure/eliminate autism and/or not accept behaviors. That we're all just trying to control the kinds of social experiences we have.<br />
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I get really unhappy when I serve rude, impatient people at the cash register. I want to shake them and say, 'Don't you realize, that the more of a crank you are to me, the less you treat me like a person, the more you go around treating every service person you encounter the way you treat me, YOU ARE REINFORCING your perception of shitty customer service. You will find more and more opportunities to treat other people like shit, bully them, complain about them, and on and on, and you will feel no better for it. No. In fact, your suffering is the only constant in that equation."<br />
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It's kind of like that.<br />
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I know some autists who are direct with other autists about the behaviors that they find unacceptable. I can't do this, and I somewhat admire it but I can't decide if it's rude at times. Maybe it can be. For example, "You are staring at me and that is making me uncomfortable. [Please go away]."<br />
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Maybe it's the 'go away' that spills into rudeness. I just say nothing, however, which starts to make it difficult for me to be in spaces where I inevitably end up in overload because of so much intrusion (like staring, or pressing at a topic that I'm politely trying to end, or not getting clear cues like 'I need to leave').<br />
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I bet this is way disorganized. I need to sleep, I have a big day tomorrow before I head to a three day retreat. But I felt I wanted to share. I am really chewing on all of this, and to top it all, my workplace is doing diversity and inclusion training in the upcoming month. Which I'm pleased about. And also painfully aware that I walk a fine line every day. I'm not 'in the closet' about autism at work, but I don't really talk about it either. I am constantly on the verge of sharing more publicly. I kind of said something about it offhand a little while ago, in the breakroom. It was all fine, but I fear if I was being treated weirdly because of that information, I wouldn't know it.<br />
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And in the realm of my own awkward or socially difficult behavior, aside from one person, no one is really giving me any feedback on what I might change. So I remain painfully unaware of, partially awkwardly in control of, and fully immersed in that which is my autism.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-74748110279142832022011-09-03T09:25:00.002-04:002011-09-03T09:25:51.898-04:00(In)Voluntary Silly VoicesIt was pointed out to me (not recently) that I have a surreal silly voice that I use sometimes. I've also been told that this voice is really grating/annoying, and that it can have the effect of disconnecting me from the people around me, and possibly cause them to take me less seriously.<div>
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I noticed that I used it quite involuntarily yesterday at work, in front of a lot of my co-workers. I was kind of embarrassed, in part because no one laughed, no one else was really talking, and so it probably stuck out quite a bit. I'm not sure how it received, and whether the person who brought the silly voice to my attention is right or wrong generically about how annoying and disconnecting it is for other people (besides them). I know that my readers/responders tend to be more supportive than not, and might say 'feck 'im and love the way you are,' but understanding this behavior and when it may be inappropriate is important to me. I don't really want to alienate myself. I agree that the effect it has, especially in situations when I need to be grown up or professional or just not stick out as odd, is alienating and can seriously affect negatively how people see me.</div>
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I love my sense of humour. I love being silly, saying wry things, pretend or surreal things, things I don't actually believe for comic effect, and since I can't do deadpan, I'll tend to go the other way and be totally silly about what I'm trying to be funny about. I don't want to shut down feeling amusement at my thoughts that are amusing. So I'd like to partially transform my behavior (as opposed to completely), rather than squelch the naturally good things about this phenomenon.<br /><div>
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Since I can't/won't publish an actual sound clip, you'll sort of have to take my word for it. It's higher than my normal voice. It's kind of like a cartoon character. It happens more often, I think, when I'm nervous, but also [in combination with] being kind of elated, happy, or just in a good mood. <div>
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I'm trying to think of examples of what I'd say in this silly voice. </div>
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"Uhoh, burned the rice again. Silly rice cooker"</div>
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"Oh, but Ms Palin is the smartest person in the world."</div>
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"Look, it's a monkey!"</div>
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"But my brain! It's melting...."</div>
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I suppose when I quote movies (which I don't do often enough for it to be a stereotyped feature of my speech), I use the silly voice.</div>
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When I say something I don't really mean, but it is ironic or pretend, I use the silly voice.</div>
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When I am being sort of childish, but mocking myself in doing so, I use the silly voice.</div>
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So. First step to changing anything, right, is awareness. After that, compassionate modifying, maybe by not using the silly voice in certain situations, like work, and if I find myself doing it, slipping up as it were, I can not berate myself about it. Maybe I'll find out it is really truly involuntary. But maybe it's possible to change it. Maybe, like at work, I have to actively not share some humourous thoughts I have, even if that means I'm appearing a tad too one-dimensional. I'm not sure. </div>
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I suppose, boiling it down, this is about NT humor and my odd aspie kind of humor, something I did develop from interacting with my (undiagnosed aspie) family, and it's something that I enjoy. It's not something everyone will understand, and I'm better off being seen as odd but enjoying life than squelching what brings me joy. </div>
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[Deity] knows I spend enough time in hand-wringing anxiety, depression and pain.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-32746099108064242782011-08-31T09:26:00.000-04:002011-08-31T09:26:35.999-04:00Is this thing on?I haven't been posting because I haven't been feeling much self-acceptance. In general, this means I have a hard time being in the world. I don't feel like that is the full reason for much of the stuff below, but it's part of it. As much as I want to change some of this because it increases my isolation, I can't seem to change it, and letting go of trying to change it just makes me feel more isolated.<br />
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<ul><li>I feel less verbal. It can be very hard to talk. Hair trigger frustration. Incomplete sentences. Can I just go hide and rock now?</li>
<li>Making eye contact is harder. Doing it means a rush of adrenaline. It's too intense. Mostly I look everywhere but at a person.</li>
<li>High anxiety making me silly.</li>
</ul><div>Don't get me wrong, I like myself. I'm just having a hard time with the involuntary stuff that makes it difficult to connect with others. </div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7857320994707217730.post-44509182116124354022011-08-14T10:47:00.002-04:002011-08-14T10:50:34.291-04:00On Autistic SpaceI'm not a hater, a (autistic) segregationist, a person who is very bitter from years of being misunderstood.<br />
However, current happenings on about.com (see blog commentary about it here: <a href="http://theautisticme.blogspot.com/2011/08/writing-about-autism-not-for-autistic.html">http://theautisticme.blogspot.com/2011/08/writing-about-autism-not-for-autistic.html</a>)<br />
where posts by autistic people were taken down because of hateful comments, makes me ever more desiring of a number of autistic only spaces, or spaces where the autistic voices are privileged. I really appreciated Stuart Duncan's post <a href="http://www.stuartduncan.name/autism/when-autistics-write-about-autism/">http://www.stuartduncan.name/autism/when-autistics-write-about-autism/</a> because as a parent, he takes the stance that feels the most supportive, accepting, and advocating for us. I still reel about the hate, the sensorship, the silencing of autistic voices because of such bad behavior on the part of non-autistic people.<br />
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I belong to a couple of online email groups on yahoo and google, for ASD or sensory processing disorder (SPD). One, for example, is an adult SPD forum where many people are sharing their self-discovery around this, and the challenges of getting adult occupational therapy when most therapists only treat kids. Every once in a while a parent becomes active on the list, and starts asking questions about their child (whatever the age), and I just feel like quitting. I've tried to raise the fact that there are PLENTY of parent support forums out there, but most other people seem to think it'd be wrong to exclude non-autistic/SPD people. I have no trouble if parents want to read forums where adults talk about stuff, because they can learn a <b>tremendous</b> amount from people who are actually experiencing autism/SPD. But I don't feel it's the place to ask questions, parenting advice, stuff like that. It feels at best intrusive, and at worst, exploitative.<br />
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It's not about hate, in my mind. I just really want a space where our voices don't seem threatened, even when it's well meaning parents trying to glean insight into their children. It seems harmless, but for people like me who have a hard time anyway being totally open, I could really use a space where it's clear that autistic voices are not ever going to be threatened. (notice that here, I am creating this space so it's really autistic space).<br />
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That's wishful thinking. I know that somehow. But I can still state my ideal world, maybe someday I'll find that space.<br />
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Autreat is an example, and really I need to make an effort to go next year. It's just hard to travel that distance, with cost etc. But it's the only one I can think of that's really autistic space, and deliberately so.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7857320994707217730.post-87631222314231627452011-04-07T12:11:00.000-04:002011-04-07T12:11:35.443-04:00feeling too muchI've thought a lot about how much I feel. It's a lot. It's overwhelming. <br />
While I think I lack communication skills to demonstrate empathy in a typical way, I think it's partly because I get so overwhelmed by feeling what's happening in a room, with another person, even an email interaction. I feel blocked, or choked up with words. I wish telepathy existed because maybe then people would *know* what I so desperately struggle to communicate. <br />
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My husband's father died this week. We flew down to visit him in his final days. It was very tough -- it'd be tough anyway, but there were a lot of strong emotions because of J's difficult relationship with his father (due in no small part to a stepmother who didn't want anything to do with J -- jeez, don't get with a man who has a kid then). Anyway it's not my stuff to process, but I can't help but <i>feel</i> how much J is hurting, and while I know that J needs words of comfort I tend toward the non-verbal because with my body I can comfort better than with words. <br />
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Messy thoughts. I gotta go lay down. We might've both caught norovirus somewhere in our travels. :(Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7857320994707217730.post-55501693736118676772011-03-29T12:07:00.000-04:002011-03-29T12:07:55.768-04:00social vs socially awkwardThe scope of this post is mainly about employment and Aspergers.<br />
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The Social Aspie kind of breaks the stereotype, but oh well; I think many people on the spectrum (maybe all of us) actually do want to connect with people, it's just difficult. I think there's a difference between being social and being socially awkward. And there's also a difference between being social and being extroverted. I'm an introvert. But I care deeply about people and I want to connect with them. I just have trouble doing so.<br />
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Employment can be tricky. Barbara Bissonnette of <a href="http://www.forwardmotion.info/home2.html">Forward Motion</a> sent out her Aspergers and NLD newsletter today and it was about how only about 20% of skills that count in the workplace are hard skills and 80% are the interpersonal soft skills that help us get along and get things done in the workplace. Temple Grandin, among others, cites certain jobs as better for those on the spectrum; one of the jobs usually on the "not great for spectrumites" list is retail/cashiering. <br />
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While I tend to agree, I work in retail and can share some of the positive things about my experience. I never thought I would be good in a retail setting. I briefly worked at a jewelery store (one of those cheap jewelery franchises), and I hated it; I didn't like interacting with the women and teens who came into the store. I found processing credit card transactions stressful, and there were so many little things to try and keep clean. I've never been a stylish person, so I couldn't get excited about fashion accessories. It was horrid, and I lasted three months. <br />
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Aside from another stint in a department store restaurant where I worked as a cook behind the scenes, I've stuck mainly to office temping and factory work. I enjoyed the factory because it was repetitive detail-oriented work and there was no interacting with the public; I could wear comfortable clothing and a smock.<br />
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When I moved to Boston, I couldn't work for a while. Once I could, I considered going to a temp agency to work in corporate office settings but the more I thought about it, I realized that I really didn't like that environment. The office politics always felt too intense for me; I had to wear clothing that was uncomfortable, and I just felt like I didn't fit there.<br />
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One day I found myself at a outdoor gear retailer and on a whim, inquired about job opportunities. I love backpacking, hiking, cycling and kayaking, and I thought this might be a good place. I got hired there. It's on the Fortune 100 Best Companies to Work For. Their benefits are great, and it's a good work culture; the people who work there are generally passionate about the outdoors, and just all-round good people. It's not your average retail sales job. <br />
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I work as a cashier. Cashiering is challenging, and I think people on the spectrum are potentially challenged by this type of job in a number of ways, and maybe my experience isn't really representative of anyone else, but I figure it's worth sharing...<br />
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<b>The Challenges</b><br />
- The job involves a degree of multitasking that is challenging. <br />
- The environment can be noisy and chaotic at times. Enter screaming baby.<br />
- Difficult customers/conflict can be really challenging<br />
- There are many complicated things to remember/learn about operating the cash register, and policies/procedures that, while documented, need to be applied appropriately.<br />
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<b>Suitable Aspects</b><br />
Good for someone detail-oriented and who is good at being accurate. I'm meticulous about doing the job properly, but it's made clear to us that most any mistakes can basically be undone, and we're not punished for making them, we get corrected and it's a learning opportunity. <br />
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This is key -- there is a kind of prescribed formula for interacting, a role if you will, which can make this less stressful than an open-ended interaction like in an office. Effective cashiering kind of involves guiding a transaction from start to finish; Greeting, ringing, providing information (like a particular discount is being applied here, etc), and finishing the transaction by taking payment, and a farewell greeting (Have a good day!). In other words, there is a <i>basic script</i> that one can follow, which helps reduce the stress of the interaction. <br />
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<b>Benefits</b><br />
There are some things about customer service that I really feel have benefited me. A few of these may be specific to the company I work for, perhaps, but are still relevant in a broader way.<br />
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I have an employer who supports diversity in the workplace, and I have an accommodation plan with them. I provided a letter from my doctor and they have worked with me to identify areas that I need support in - for instance, there is one cash register by the door that is supposed to be staffed at all times, but it is more challenging because people are always approaching that end cashier to ask questions, so it requires more multitasking. I have an accommodation that I don't work that register, because when I try to do that one I make mistakes when I normally don't make mistakes. I get overloaded and stressed, and my employer is fine with having me manage this by avoiding that register.<br />
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I have the opportunity to interact with a large number of people in one day, but within parameters that I can handle (because of the script, or prescribed role I can take). Now that I am fairly comfortable with the basics of taking payment for someone's purchase, I can interact with them to the degree I feel comfortable. If I'm more overloaded that day, I can simply ring stuff up and say only what I need to, but if I feel more social I can ask them questions about their upcoming backpacking trip or vacation, or tell them about a piece of gear they are buying that I have experience with. <br />
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When conflict arises, like if a customer is complaining or is asking for something I don't know how to handle, I have supportive managers I can ask for help. They are always willing to answer my questions. The return policy at this store is very liberal, and I generally don't have to say no -- this makes the job much more enjoyable. I am given all kinds of tools to give great customer service, and I rarely have a customer leave me feeling dissatisfied. <br />
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I can practice being friendly and receptive; I notice, for instance that when I make eye contact with the customer, the interaction is much more positive and friendly. It's really damn hard to do, but cashiering offers a low-stakes way to practice getting used to doing it. My job involves a tiny bit of sales, but there's no pressure with it, and I find that when I apply more or less effort I get results. This has been a great growth experience, and one that offsets my experience at that crappy fashion chain.<br />
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I get to experience interacting with ALL kinds of people. I meet laid-back Californian climbing buffs, bratty moms with their bratty teens, controlling middle-aged women who are addicted to shopping, scruffy city public works employees, police officers, military base personnel, extremely rich Boston executives who are weekend warriors, old hippie couples who are getting back into hiking, and lots of parents buying their spoiled kids The North Face Denali jackets. All kinds. Nice people, rude people, controlling people, prickly people, crabby people, super-positive friendly people, gay couples who aren't sure how I'll treat them, type-A runners, closet yogis, health freaks, alpine backcountry skiers, exhausted new parents, twenty-somethings getting ready to hike the Appalacian trail, ladies looking for a sporty 'cane' to help them walk after surgery. I would not get this in an office, or a factory. This offers mini-lessons in human nature and how I do or do not handle these different personalities.<br />
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I get to learn that how an abusive person treats me, a random cashier they know nothing about, has nothing to do with me because I'm treating them the same way as everyone else. I learn that the person who may seem snobby and inaccessible is actually a really down to earth person. I learn some people really are maybe-gangsters who pay with giant rolls of 100s. I learn that many people walk around anxious and when I am relaxed and I interact with them, it's a mirror for me how much I can be difficult to deal with when I'm anxious.<br />
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In general, I feel like cashiering is a training ground for social skills. There are a set of rules, which makes the interaction less stressful, but there's also plenty of opportunity to practice small talk and also how to handle different personalities. Because the workplace empowers me to do what I can to provide good service, for the most part interactions are positive, but the odd time when there is difficulty, like if a credit card gets denied, or someone wants something we cant do, or someone is being unreasonable, I learn assertiveness skills, or through my manager, learn how to handle that situation assertively.<br />
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I think it definitely helps that I have disclosed to my employer and have an accommodation plan. My six-month review was excellent. I exceed expectations, and my manager said, "Don't go anywhere". :)<br />
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For someone who is social but socially awkward, has sensory processing problems but can manage some degree of sensory bombardment (as long as they get downtime too), retail employment with a supportive employer may be accessible. It's not for every person, NT or spectrum, and I'm not even suggesting that it'd be a great thing to do long-term (it also doesn't pay very well). Some people could handle it. They may be struggling to find a workplace that can accommodate them, and dismissing retail jobs completely for all people on the spectrum may be robbing some of us of both opportunities for viable employment, and a space to practice valuable soft skills.<br />
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<a href="http://retailindustry.about.com/od/awardwinningretailchains/a/best_retail_companies_work_for_2010_fortune_magazine.htm">Fortune's Best Companies to Work For</a> (retail)Unknownnoreply@blogger.com1