Tuesday, December 13, 2011

The Crossroads is a Field

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".

That response stuck with me. 

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 DBT 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. 

[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.]

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, Sharon da Vanport, shared Rachel Cohen-Rottenberg's Dec 2 post. Her writing, as always, is such a strong reflection of what I'm struggling with, despairing in, yearning for. 

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. 

I will never feel at home in that world.

Rachel writes, "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. 

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.

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.

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.

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.
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.
There is no shame in being on the margins. There is only shame in believing that I am too important to be there.  -- Rachel Cohen-Rottenberg

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.

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.)
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. -- Audre Lorde

If you are on the margin, however silent or small or alone you feel, know that you are really none of these.

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.

Sunday, September 25, 2011

just breathe

I'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.

All I wanna do is sleep, hide, escape. That won't help with getting anything done.

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.

So I'll just keep breathing, and maybe find the strength/focus/will/courage to get shit done and keep on going.

Saturday, September 17, 2011

Disablism Among Autists

I'm caught between notions of inclusion/neurodiversity and notions of how difficult it is to change some responses to socially untypical behaviors.

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.

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?

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.

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.

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.

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."

It's kind of like that.

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]."

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').

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.

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.

Saturday, September 3, 2011

(In)Voluntary Silly Voices

It 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.

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.

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.

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. 

I'm trying to think of examples of what I'd say in this silly voice. 

"Uhoh, burned the rice again. Silly rice cooker"
"Oh, but Ms Palin is the smartest person in the world."
"Look, it's a monkey!"
"But my brain! It's melting...."

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.

When I say something I don't really mean, but it is ironic or pretend, I use the silly voice.
When I am being sort of childish, but mocking myself in doing so, I use the silly voice.

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. 

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. 

[Deity] knows I spend enough time in hand-wringing anxiety, depression and pain.

Wednesday, August 31, 2011

Is 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.

  • I feel less verbal. It can be very hard to talk. Hair trigger frustration. Incomplete sentences. Can I just go hide and rock now?
  • Making eye contact is harder. Doing it means a rush of adrenaline. It's too intense. Mostly I look everywhere but at a person.
  • High anxiety making me silly.
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. 

Sunday, August 14, 2011

On Autistic Space

I'm not a hater, a (autistic) segregationist, a person who is very bitter from years of being misunderstood.
However, current happenings on about.com (see blog commentary about it here: http://theautisticme.blogspot.com/2011/08/writing-about-autism-not-for-autistic.html)
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 http://www.stuartduncan.name/autism/when-autistics-write-about-autism/ 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.

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 tremendous 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.

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).

That's wishful thinking. I know that somehow. But I can still state my ideal world, maybe someday I'll find that space.

 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.

Thursday, April 7, 2011

feeling too much

I've thought a lot about how much I feel. It's a lot. It's overwhelming.
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.

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 feel 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.

Messy thoughts. I gotta go lay down. We might've both caught norovirus somewhere in our travels. :(

Tuesday, March 29, 2011

social vs socially awkward

The scope of this post is mainly about employment and Aspergers.

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.

Employment can be tricky. Barbara Bissonnette of Forward Motion 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.

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.

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.

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.

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.

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...

The Challenges
- The job involves a degree of multitasking that is challenging.
- The environment can be noisy and chaotic at times. Enter screaming baby.
- Difficult customers/conflict can be really challenging
- There are many complicated things to remember/learn about operating the cash register, and policies/procedures that, while documented, need to be applied appropriately.

Suitable Aspects
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.

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 basic script that one can follow, which helps reduce the stress of the interaction.

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.

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.

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.

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.

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.

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.

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.

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.

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". :)

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.

Fortune's Best Companies to Work For (retail)

Sunday, March 27, 2011

Hope and then

Thanks to wave mom -- I have been thinking about waking up this blog, and her recent comment is the extra little push I need. A combination of things had me pulling inward and this has been a useful period of introspection and internal shifting toward what I hope is a more balanced view of myself and the world.

In other words I've been damn depressed but I think there is some positive function to this depression. A psychologist I've been seeing said that I'm clinically depressed and have been for a long time. I'm not sure what's a long time (I don't know when I haven't been depressed), but yeah, it's been a long time, though the quality of depression changes over time. Lately it's been a very thick, tiring kind of sadness and feeling stuck. I think that rather than resisting it, I've realized that if I honour that place I can glean important insight from it. So I'm sitting with it. Indeed, changes come.

Heh, anyway, I think I have some writing in here somewhere. Keep an eye out (but don't let it dry out har har)

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