Journeys with Autism

In this month’s issue of The Sun magazine, I found the following quote by Philip Slater:

“Despair is the only cure for illusion. Without despair, we cannot transfer our allegiance to reality—it is a kind of mourning period for our fantasies. Some people do not survive this despair, but no major change within a person can occur without it.”

Those were the perfect words for me to find at this particular moment of my life. I’ll try to explain why.

After I wrote my post about self-worth, I noticed myself living with the emptiness inside, and I saw that it wasn’t going kill me. In fact, I felt like a great burden had been lifted from my shoulders. All my life, I’d struggled with improving my sense of self-worth, and now I felt nothing but relief that I didn’t have to struggle anymore. I could stop going to war about it. I could move on. Or better yet, I could just sit still.

One evening, as I sat knitting, I found myself thinking, “Okay, so I feel no self-worth. I feel empty. Yup. Empty. It’s weird. It’s sad. It’s… Hey, this hat is really coming out well…” I was just sitting there with the homespun yarn in my hands, watching myself knit around and around on circular needles, thinking about Bob spinning the yarn, appreciating the fact that the lanolin was healing the cracked skin on my fingers, and not having the pressure to do or be anything in particular. After all, I was empty of worth. What could I possibly do of any importance? Such freedom!

And then, it came to me: The empty place inside is where my parents’ love should have been. I felt no self-worth because I had never felt any love from them. And then I thought about the sexual abuse and the despair I felt when it started. I was eleven, and that was the day that I started to lose my family forever. That man who abused me was not the same man who had thrown baseballs to me in the backyard. He was not my father. It was as though my father had died, and some other man who looked like him, and talked like him, had taken his place. My mother would never have believed me, and so she was gone, too. My brother was only eight. I wasn’t going to tell him. How could I? I didn’t even have words for it. In that moment, everyone was gone, and I was alone.

Since then, not one of my relatives has expressed any love, any compassion, or any concern for me. Quite the contrary, in fact. And all these years and years of losing people started one night when I was eleven, and somehow, I knew it back then. I sensed what it meant for my life. And I was right.

I accept these losses now, but sometimes, they make me very sad. My friend Ben said that it’s okay to be sad about it all. How could I not be sad? Bob has said many times that the emotion I express most is sadness. Of course it is. How many people have I lost over the course of my life? I can’t even keep count of them all.

And then there was the despair of watching my dreams for my life drift away as my disabilities became more and more apparent. As much as I love the gifts of my autism, I’ve had to grieve for that person I thought I was, and at times, the grief has filled me with despair so deep that I didn’t know whether I’d ever be able to climb out of it.

Last week, I talked these feelings over with the doctor who manages my medication. I see him once a month for an hour. As I described what I was going through, he said that my grieving seemed to be going well. He said you know that your grieving is going well when the sadness wells up inside and you start to cry, and then at some point, you notice that you’re thinking about getting a pizza, or that you’re remembering an afternoon with your best friend when you were ten. You grieve, and you leave room for other things to enter. And then he leaned forward and said, “I’m going to tell you a secret. The grieving never ends. You just learn to carry it differently. Nobody wants to admit it, but it’s true.”

Another piece of relief, of a burden being lifted. You mean, I don’t have to resolve this grief? You mean, I don’t have to go to war against it? You mean, I don’t have to feel like an utter failure because I feel sad? How utterly fantastic is THAT?

After all, life is predicated on loss. Life ends. Jobs end. Friendships end. We end. Everything is fragile and finite. Broken-heartedness is one response to all of it. It’s my response to all of it. I’ve been broken hearted all my life. I live in a culture in which we’re always supposed to be happy and comfortable and thinking positively, while at the same time I’ve a) been assaulted by the very people who were supposed to love and protect me, b) had my senses assaulted by the world around me, and c) had my mind and heart assaulted by the madness of the world. I can’t even read a newspaper anymore. The so-called “healthcare debate” drives me crazy. How can adults in the richest country in the world not agree on how to provide universal healthcare? How can they be so arrogant and so unbearably stupid? How can they strut and accuse and lie and play politics with people’s lives?

It takes a spiritual warrior to be broken hearted in a culture like this one.

In the midst of all these layers of sadness and despair, I’ve been burning away the illusions of who I was supposed to be. I was supposed to be able to do anything I wanted. And what were all of these nebulous, terribly important things waiting for me in my future? I don’t even know. They were someone else’s illusions, I suppose. I just took them on. Now the illusions are gone, and I can feel the relief of being exactly who I am. I walk around town in a big old headset, communicate with people in writing, don’t make much eye contact, and that’s who I am—right now, right here, at this very moment.

The rest is either a dream of who I was supposed to be, or the memory of who I no longer am. I was once the mother of a small child, but no more. I was once married to her father, but no more. Bob and I once led services together, but no more. I used to work full-time, but no more.

If I keep living in what’s past, I’m living in a world of illusion, and my whole life has been about truth, about speaking the truth to my family, about dealing with the consequences, about never being able to do anything other than say what’s real, despite the fact that it rarely gets me what I want—compassion, support, friendship. But it’s who I am, and I love that it’s who I am. My whole life has been about trying to see things as they really are, and about trying to speak about them as they really are. And somehow, the despair I’ve felt has burned through layers and layers of illusion, and left me with the time and the willingness to look at the truth of my life.

At times, I’ve been afraid that my despair would swallow me alive. Some people don’t survive despair. I’ve wondered at times whether I would survive it. But then I remember that I have a fierceness inside me, like an unquenchable flame. Somehow, the despair has taken my fierceness and used it burn through so many illusions that I am left empty and can begin to live.

© 2010 by Rachel Cohen-Rottenberg

As most of you know, I volunteer for a thrift store that benefits the local area hospice. Several weeks ago, I told the store manager that I sew, and since then, I’ve been up to my elbows in different kinds of mending and restoration projects. I even bought a sewing machine to help the process along, although I sew by hand when mending quilts that are hand stitched.

A couple of weeks ago, the store manager showed me some chair cushions that she wanted me to re-cover, so we started with the ugliest ones. They are (or should I say, were) ugly in a kind of 1970s polyester way. At first, I tried replacing the material altogether, but then decided that it made more sense to sew new material onto what was already there. For the front and back of each cover, I used my sewing machine. For the side panels, which had to be sewn around a zippered opening, I sewed by hand. Here is a picture of the two covers. The one on the right is the original, and the one on the left is my beautification of it:

Yes, the border around the original was made of a kind of tinsel-like gold color that should simply be illegal to use in a home furnishing. It’s an affront to the senses. When I wasn’t working on the covers, I had to hide them under other material in my loft so that I couldn’t accidentally catch sight of them.

I brought the finished cushions into the store yesterday, and the manager was so happy with them that she brought the chair up right away to sell. When I went in today to take a picture of it, I learned that it had already been sold, but was being held for pickup downstairs. So I went down and took some photos of it. Here’s the best one:

I love doing this work, and the people at the store are nearly ecstatic about it. Everyone seems to have adjusted to my not talking or hearing, and they are very appreciative of what I do. They write me notes, show me what to do, and treat me with a lot of kindness. I’m getting less and less self-conscious about my headset and my silence, and more and more able to rest easy in the knowledge that I use them to work with my disability (in the same way that I would use a wheelchair if I couldn’t walk).

It’s good to feel part of something again. It’s been a long time coming.

© 2010 by Rachel Cohen-Rottenberg

When I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.

And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.

But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.

That’s right. None.

I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.

Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.

But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.

It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.

It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.

I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.

Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.

I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.

I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.

Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:

“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.

[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”

I’m not sure I’m ready to rejoice.

© 2010 by Rachel Cohen-Rottenberg

Two weeks ago, I had an experience that was life-changing. It was so intense that I haven’t been able to write about it until now.

It was a Thursday afternoon, and I had spent two hours working at the nice, spacious, quiet new thrift store. I like working there, and the staff gives me good, tactile, straightforward things to do—like tagging items, stamping bags, pricing books, and so forth. Now that I’ve told them that I sew, they’ve been sending me home with quilts in need of repair, and I’ve been having a wonderful time bringing them back to life. For example, here are before and after photos of my latest quilt renovation project:

So, anyway, back to the day in question. That day, I decided to wear only my earplugs to the store, and to take them out when I wanted to talk with people. For awhile there, the Zoloft seemed to be helping my sensory sensitivities and language processing issues, so I was feeling confident. Unfortunately, moderation is very hard for me. When my power switch is turned to “On,” it gets stuck, and it takes something rather harrowing to get it turned to “Off.” As a result, on this particular day, I had a 5-10 minute conversation with one person, and listened to another 5-10 minute conversation between two other people, and talked with my friend Tom (who has auditory sensitivities similar to mine, though not as severe). In other words, I was chatty.

Then I came home and felt like I was getting the flu. I mean, everything hurt. Everything. My joints. My muscles. My skin. My stomach. My head. I told Bob how I felt, and he thought I was getting the flu, but I knew it wasn’t the flu. It was the stress of talking, listening, translating, falling behind, talking, listening, translating, falling behind, talking, listening, translating, falling behind, over and over and over and over and over until I couldn’t think straight anymore. It’s as though the stress were radiating to every part of my body. I’ve felt so often over the past year as though I were getting the flu, but then I take a day or two to myself, and I feel better. So I finally figured out why I was getting sick.

Once my nervous system calmed down, I decided that I had to grasp the bull by the horns before it gored me to death, so I wrote the following email to the lovely managers and volunteer coordinator at the store (titled “Working Around My Disabilities”):

Hi all–

I plan to be working at the store this coming Wednesday and Thursday, and then to switch to Tuesdays and Thursdays in the following weeks. I will need to come in from noon-2pm (rather than 11 am -1 pm), because I’m needing my mornings for better self-care. Please let me know whether those hours will work for you.

When I come to the store, I’d like to communicate with written notes as much as possible. Don’t get me wrong—I absolutely love talking with all of you—but talking and listening are getting more and more difficult. Everything in me just wants to be “normal” and chat it up with everyone, but I overdid it last week and came home with muscle pain and body aches. My body seems relentlessly committed to reminding me that my autism and sensory processing issues are disabilities (even though I look pretty typical, even to myself) and that I need to take care.

See you on Wednesday…

Love,
Rachel

When I got back to the store the following week, I wore my earplugs and my headphones, and I knew that I could not remove them for any reason. The store managers were totally cool about it and communicated with me via notes. They love the work I’m doing on the quilts, they’re glad to have me at the store, and all is well with that part of the world.

Except, of course, that my last piece of denial is in shreds—the piece of denial that says, “Oh, come on. You can talk. You can listen. How hard can it be?” It’s hard. Unless it’s a one-to-one conversation with a close friend, a fellow Aspie, or a family member, it’s a non-starter. Completely. I know it. And knowing it makes me feel both incredibly relieved and very depressed.

The thing about being autistic and not finding out about it for 50 years is that I’ve had a lot of practice at looking around at all the things that interest me and thinking about how much fun they would be to do. Despite the fact that the world is quite overwhelming to my senses much of the time, I find the things that people do quite interesting. In fact, except for accounting and flipping burgers, there is very little in life that I don’t find interesting. I’d love to know how to cut people’s hair. I’d love to know how to repair a car engine. I’d like to know how to play soccer. I’d like to speak five different languages. I’d like to walk into a situation with people and talk to them. My brain looks at things and thinks, “That looks like fun.” And then I try to do them and find that they involve extended interactions with other people, and that’s all she wrote.

So, I now understand that I’ve got a serious disability going here, and I realize that I must tell people what I need without feeling ashamed or apologetic. I have no choice. I must advocate for myself and ask for the accommodations I need. With this reality in mind, I went to my appointment at VocRehab yesterday, and had a very good conversation (in writing and a bit of ASL) with my counselor Will, who is Deaf. I filled out a bunch of paperwork, and we discussed the kinds of jobs I might be interested in. I still have to have my application for VocRehab services approved, but I don’t think I’ll have any problem there. [UPDATE: I'm approved! In response to an email I sent asking how long the approval process would take, Will wrote, "You are eligible for VR services based on the medical information that I already got from you. Clients who are interested in work and have a documented disability/employment barrier qualify for our services."]

All in all, it was very helpful to be working with Will and seeing how comfortable he is with himself and how empowered he feels. It gave me a lot of strength. Plus, the office is so spacious and quiet, and the people there are so friendly, that I felt pretty good by the time I left (taking into account, of course, how tired I felt from interacting with people in general).

So, there you have it. I’m seeing the reality of my life more and more clearly, but I’m not seeing what lies ahead. It’s a hard place to be standing. I’m hoping that I can get a clearer sense of how to shape the next part of my life.

© 2010 by Rachel Cohen-Rottenberg

Jenn Power is a typically abled woman who lives with disabled people in an intentional community called L’Arche Cape Breton. She and her husband are the parents of twin boys with Down Syndrome. A week or so ago, I was reading her blog, Possibilities, when I came upon a post about some harsh words directed at her on the New York Times blog Motherlode. Apparently, this community leader and loving mother had committed the unpardonable sin of saying out loud that she would not want to cure her sons of Down Syndrome. I was especially struck by these words:

“I know that my position is a minority one. When you throw your lot in with marginalized people, you get marginalized. I understand that.”

Reading these words set off a wave of new realizations about my autism, my relationship with Bob, our ongoing struggles, and new possibilities for our lives.

Many of us autistic folk have talked and written about living on the margins, observing group dynamics, and deciding how to act. That feeling of living on the margins has always felt so precarious to me. I’ve always felt as though I were balancing on a fence post, living in perpetual fear of falling over backward.

So today, instead of thinking about “living on the margins,” I started thinking about “living in the margins.” The more I thought about it, the more I experienced a greater sense of spaciousness. All things being equal, I’d prefer to be able to come and go from the margins to the center and back again, but all things are not equal. In this society, I have a disability called autism, and I live in the margins of the culture all the time.

Because I’m also white, American, middle-class, and well-educated, the margins I live in are quite a bit wider and more elastic than the margins in which others live. In other words, I don’t for a minute believe that being autistic erases all other privilege, nor do I believe that my privilege can ever erase my marginalization. If anything, being autistic and otherwise privileged creates an odd kind of self-perpetuating expectation. I often think that, given my privilege, I should be “higher functioning.” I should be much more “normal.” I should feel a greater sense of “belonging.” I should be able to figure out how to live somewhere other than in the margins.

But of course, I can’t. That’s what being disabled is all about in the world as presently constituted.

Ever since Bob and I made our relationship known eight years ago, I have felt progressively marginalized. The first attempt to marginalize me took a very tangible form: one person on the synagogue board of directors suggested that Bob should leave me, and that I should leave the community entirely. The response of the other board members? Silence. While Bob did not leave me, we did leave the synagogue community, because when people saw us together, they spoke with Bob and ignored me completely. The same kinds of things happened in the larger community.

Virtually all of us on the spectrum have had that feeling of being hidden in plain sight, but until recently, I had never thought of it as an experience of marginalization. Instead, for years, after every outing, Bob and I would have long, tedious, upsetting discussions about how he got all the attention, about the ways in which people were ignoring me, about the fact that he didn’t step in and make it stop, and about how powerless and angry I felt. Because we couldn’t define what was going on in terms that made any sense, these discussions were exhausting and unproductive. We just kept having the same argument, over and over.

After I read Jenn’s piece, Bob and I had a long talk about marginalization, and suddenly, I realized why I had been so angry. I realized that Bob had never consciously given up his privilege of being “normal” and joined me in being marginalized. Not that I wish being marginalized on him or on anyone else, mind you, but do we really have another choice? After all, as Jenn said, “When you throw your lot in with marginalized people, you get marginalized.” Isn’t that what happens to parents of autistic children? To the family members of autistic adults? How many neuro-typical people want to befriend them, or listen to them talk about their loved ones? Not many.

Although Bob is quite wonderful, I’m tired of seeing him as the de facto prototype of “normal.” Some time ago, he said that it is hard to go out with me because I have to block sound, and he doesn’t like having to talk loudly in order for me to hear him. I’ve always felt uncomfortable with the impasse in which that leaves us, but I hadn’t been able to figure out how to get past it. Finally, in the midst of our discussion about marginalization, I blurted out words to the effect that if I’m going to feel human, he really needs to come into my world and stand next to me. Maybe, when we go out walking or to a restaurant, we don’t talk at all. Or maybe he talks loudly and feels a bit conspicuous. I don’t know. But uncovering my ears out in public really can’t be part of the plan, and I can’t stay home all the time, either.

For both our sakes, I don’t want Bob by my side 24/7, but our lives are becoming increasingly separate, and it bothers me. In the course of our conversation, he said that he’s willing to drop a lot of activities in the outside world, start from scratch here at home, put our relationship first, navigate the world together, and see what possibilities flow from there.

To get ourselves started, we did something simple: we went grocery shopping together. Part of our agreement was that “together” was the operative word. If I’m alone at the grocery store, it’s challenging, but I stay completely focused on getting my shopping done, and it works. However, when I’m with Bob, I’m more open, and if someone else comes in and starts talking to Bob, I feel very disoriented in an already challenging situation. So, if someone were to come over to talk, we agreed that Bob could say whatever he needed to say in order to keep his focus on me. In fact, I gave him permission to say just about anything about me he pleased: that I’m disabled, autistic, dazed, confused, weird, and undeniably odd. I don’t care. It just doesn’t matter to me anymore.

Fortunately, no one came up to Bob and wanted to talk, so we got our shopping done easily and had a very good time of it. Even lugging the groceries home was fun!

As we’ve gone through this process, Bob has realized that his ongoing resistance to standing in the margins with me derives from the fact that the only time he’s ever focused on being with a disabled partner, she was dying. Part of him hasn’t wanted to accept that I’m disabled because, when the thought arises, his mind goes to a very sad, scared place. But I’m not dying. On the contrary: I’m fighting like mad to feel part of the world, to feel that my life is meaningful, to feel less afraid and more powerful. I’m fighting to widen the margins in which I live, for myself and for other people.

I’ll let you know how it goes.

© 2010 by Rachel Cohen-Rottenberg

I’m feeling very depressed. I was very “up” after my trip to New York City, and I seem to be in a slide now. I’m very teary and feeling very isolated.

My daughter is in two plays at school, her very first ones, and I won’t be able to go. It will be crowded and noisy before and after, and I will get seriously overloaded just being there. So, I talked to her, and she seemed fine with it. I offered her support around the play, like helping her practice her lines. She suggested that I contact her principal and arrange to get a DVD of the performances, which I’ve done. But I feel really sad about what I can’t do.

Then, yesterday, my ASL tutor was supposed to come over, but she forgot. We had changed the day from Monday to Tuesday this week, because she had a teachers’ meeting on Monday. So, since the schedule had changed, she got involved in other things and our session slipped her mind. I know that it wasn’t personal. I know that. It’s just that in order to see her—in order to see anyone—I basically have to orient my entire day around pacing myself, not doing too much, conserving my energy, and getting ready to interact. When she didn’t show up at 4:30, I was like a little kid, looking out the window every 10 minutes, wondering where she was. It was like my whole day was wasted. She sent me a really apologetic note this morning, and I’m not angry at her. I’m just sad.

I’ve begun feeling that perhaps I need to find a part-time job, just to have a routine and a context outside of myself. I contacted a counselor at VocRehab Vermont, a Vermont state agency that helps put disabled people to work.  The counselor’s name is Will. He’s the Deaf counselor I emailed several months ago regarding strategies for navigating the hearing world. I’ve got an appointment to meet with him next Friday. Here’s the email I sent him this morning:

Hi Will,

Next Friday would be fine. Please send directions to your office. It would also help me if we could communicate in a quiet room. If there is too much background noise, I won’t be able to hear your interpreter’s voice or think clearly.

Here is a short list of my disabilities/challenges:

Asperger’s Syndrome (a form of autism)
Sensory Processing Disorder (of the sensory over-responsivity type, mainly affecting moving visuals and sound)
Mild dyspraxia with fine motor tasks, moderate dyspraxia with gross motor tasks (Dyspraxia is a difficulty in sequencing novel tasks.)
PTSD, anxiety, and depression (all managed by medication)

And here is a list of what I’m good at:

Focusing on the task at hand
Organizing just about anything
Discerning and creating patterns
Doing strenuous physical work
Writing and editing
Creating art
Being honest and direct

I’d like to find work in the non-profit, social-service sector. Most of my employment has been in front of computers in corporate environments, and I don’t want to work in front of a computer or go back to the business world again.

All the best,
Rachel

I don’t know what he’ll be able to help me do. I’m seesawing between my fear that he won’t think I’m really disabled, and my fear that he’ll think I’m too disabled to work at all.

I seriously need to get some support for being out in the world again. I don’t know what I’m suited to do anymore. My level of confidence is at an all-time low, and no matter how many times I tell myself that I’m a good, intelligent person, it doesn’t seem to matter. I just want to cry.

© 2010 by Rachel Cohen-Rottenberg

The first time I heard the term disabilism, I winced and rolled my eyes. It’s not that I’m against the use of “-ism”s to describe bigotry. There’s enough bigotry in the world to justify a whole dictionary full of “-ism”s. My problem was more basic: I didn’t believe that disabilism existed. After all, who hates disabled people?

Duh.

Because I live in a culture that teaches fear and loathing of difference, I’ve imbibed all the poison the society has to offer—racism, sexism, homophobia, classism, misogyny, anti-Semitism, you name it. Knowing that I’ve internalized all of this hatred and fear, I’ve spent the better part of my adult life trying to root out as much as I can, secure in the knowledge that I will never fully succeed.

Until I had to deal with the fact that I am a disabled person, it had never occurred to me that I had any kind of bigotry against disabled people at all. In fact, I have a very vivid memory of the day in Berkeley that a young man in a wheelchair called me over and asked me to drain his urine bag into the street. I was happy to do it, and he seemed to have no self-consciousness about it at all. Perhaps he sensed my innocence and knew that I would be nice. I don’t know. All I know is that it’s one of my best memories.

But why would I remember that moment? Well, it made me feel good about myself. It made me feel helpful. It made me feel compassionate. Okay. Are any of those feelings a problem? It depends on what lies beneath them. For me, they were based on a subtext of “Oh, this poor man has to actually ask a stranger to empty his urine bag. On a public street.” The fact that he was gracious, self-respecting, and without shame does not take away from the fact that I thought of him with pity, and I that I felt lucky that I wasn’t him.

If you asked me what I felt when I saw a person in a wheelchair, I’d inevitably say, “Oh, that must be so hard for him.” Or if you asked me about a person who was Deaf, I’d probably say, “Oh, it must be awful not to be able to hear Beethoven.” It didn’t matter what the situation. I felt sorry for people who weren’t able-bodied in the way that our society defines it. Of course, I never thought I was being bigoted, because one of my best friends was in a wheelchair, and as we all know, if one of your best friends is….well, you know.

What does it mean to feel sorry for disabled people? What does it mean that I was glad not to be one of them? What does it mean that my first thought wasn’t about the person, but about how hard, how limited, how sad, how embarrassing, how terrible that person’s life must be? Is that really bigotry?

I think it is. My reactions were based on a stereotype of what a disabled person must be feeling, of what a disabled person must be thinking, and of what a disabled person’s life must be like. What’s missing from all of these moments is something as necessary to human existence as clean air and water. It’s called respect. Respect and pity do not go hand in hand. Respect and feeling sorry for someone do not go hand in hand. Respect and thanking God you’re not like that poor schmuck over there do not go hand in hand. Respect only goes hand in hand with full acceptance, with encouragement, with love for the individual, and with justice. Respect powers life forward. It doesn’t leave it hanging in mid-air while you wring your hands and think, “Oh, I’m so glad I’m not you.”

When I check out my attitude toward myself, I nearly choke on what a toxin disabilism really is. Lately, I’ve finally given in and begun using the “disabled” label to describe myself, as in “I am disabled in the culture in which I live, because the culture does not cultivate my strengths, support my needs, or respect my existence. And just for the record, being disabled does not mean that I’m disordered, broken, or impaired.” Why go through all of these words? Why explain it? Why be so defensive? Why not just say “I’m disabled” and get over it? Why do I feel saying that I’m disabled is “giving in” to some sort of adversary?

Because  in some of the deepest places in my being, those places in which the light of rationality and the balm of compassion have not yet entered, I think I’m pathetic. I feel ashamed. I feel broken. I’m one of those people over there: the ones who are always too loud, or walk funny, or talk funny, or look funny, or drool, or make weird sounds, or don’t get what’s going on. They’re the people I used to feel sorry for all those years when I thought I was being compassionate and accepting and helpful. Now I am one of them. Oh. My. God. Now I have to cross the line and say, “Yes, I’ve faked it really well all my life, and now, the facade is gone, and I am who I’ve always been.” I’ve always been autistic. I’ve always been disabled. I’ve always faked my way through everything and wondered why I hated myself so badly in the process.

When the culture tells you that being disabled means that your life isn’t worth as much as the next person’s life, that message tends to engender self hatred. When people talk about a cure for autism, what they’re really saying is that somehow, if you took away the autism, you’d get a person whose life was actually worth something. Well, excuse me, but the last time I looked, I’m the only one who can decide whether my life is worth something. I live in a world that makes it hard for me to believe sometimes, but that doesn’t make it so. Not by a long shot.

As I write these words, I’m aware that I’m making a major shift. I’ve gone from feeling dispirited about everything I can’t do to simply looking at the internalized, cultural messages that impede my ability to feel worthy of love and respect. I call that progress. In fact, in the life of this disabled person, it’s a major leap forward.

© 2010 by Rachel Cohen-Rottenberg

I’ve been struggling in my ASL class, and Michelle’s comment about how visual input can affect auditory processing gave me some insight as to why. While my last post was about my auditory sensitivities overwhelming my visual sense, this post is about what happens when most of the stimuli are visual.

First things first, though: My ASL class, as it turns out, is not as quiet as I thought it would be. While the course syllabus says that there is no talking upon entering the classroom, people are still talking before class. When I asked the teacher for clarification, she said that she doesn’t feel she can ask people not to talk when they don’t know enough ASL to otherwise communicate. I was hoping that they could just be quiet and have the experience of how it feels to have to adapt, but alas, another of my great ideas is just…well, another of my great ideas. Anyway, with my earplugs and headset on, I can still hear people’s voices. I can’t hear words, but I can hear what sounds like undifferentiated noise, and it wears me out before the class even starts. Were I to show up right at the beginning of class, however, it wouldn’t make much of a difference. The teacher jokes around a lot, so there’s a lot of laughter, and it’s quite distracting. Most of the time, I feel exactly as I do in the rest of the world: I wonder why everyone else is making noise when I’m trying so hard to concentrate.

But the problem isn’t just sound. It’s the fact that being in a room full of people is very disorienting. Even if the room were silent for two hours, I’d have all the visuals of people moving around, using their hands, gesturing in nonverbal ways, expressing things with their faces, and thereby distracting the living hell out of me. In the class, I have to focus very hard just to communicate and respond to the simplest signs in the language—signs that I can easily use and understand when I’m watching my ASL DVD, or showing Bob or Ashlynne what I’m learning. I need more structure, more quiet, and fewer people in order to learn and to use what I’m learning.

Unfortunately, the class feels very unstructured and chaotic to me. The description says that we’re supposed to be learning Units 1 through 6 of the book we got, but we’re already three classes into a 12-week course and we’re not even all the way through Unit 1. When I asked the teacher about the homework after the second day of class, she said that she doesn’t give homework, and that we should just study the material in the book on our own. Then, when I asked whether we could use signs in class that we’ve learned from the book, she said no, because not everyone will have learned the same signs. She only wants us to use the signs that she’s taught us in the class so that we can all learn them together. 

I understand what she’s trying to accomplish, but my brain doesn’t work that way. I have to learn things outside of class in order to really understand how to do them; I can’t just pick them up from watching her once a week and remember them when I get home. There is far too much in my visual field for me to be able to discern what I’m supposed to remember. And of course, once I get back to class, I can’t remember what signs she’s taught and what signs I’ve learned from the book.

And then there’s my moderate dyspraxia. I have a lot of trouble watching, imitating, and sequencing moving visuals, and ASL is one long series of complex visuals. While it’s a beautiful language, and I love learning it, I’m also finding it very challenging. When visuals are static, I can focus on them to my heart’s content and see all kinds of patterns and colors. When visuals are moving, it’s very difficult. I can get there, but it takes time and work. I’m willing to put in the time and work, but I need a different learning environment. The present one isn’t working for me.

I finally understand why Aspie kids need IEPs and one-on-one aides. I need educational supports at 51 that just aren’t there in a regular classroom. I’ve emailed my contact at the school about finding some other way to learn and practice ASL. Perhaps someone would be willing to tutor me? I don’t know. Wish me luck!

© 2009 by Rachel Cohen-Rottenberg

Yes, the title of this post is a very apt metaphor for my life at present, but my intention is to write about how to literally navigate when you literally do not have a sense of direction.

My ASL class begins next week, so I decided to walk the route to and from the school. I have learned the hard way that if I want to arrive at any new place on time, I must do a trial run and make sure that I know the route. So, before I made my way to the school for the first time, I looked up the route online. Since I can’t read a map very well at all, I simply printed out the written directions:

1:  Start out going SOUTH on JUNIPER ST toward ALDER ST.

2:  Turn RIGHT onto ALDER ST.

3:  Turn LEFT onto CATALPA ST.

4:  Turn RIGHT onto HOLLY ST.

5:  Turn SLIGHT RIGHT onto WILLOW ST.

6:  Turn RIGHT onto QUINCE ST.

7:  Turn LEFT onto REDWOOD ST.

8:  Turn RIGHT onto HAZEL ST.

9:  Turn LEFT onto LILAC DR.

10:  100 LILAC DR is on the LEFT.

Yesterday, I set off for the 2 ½ mile round trip. Because my directions were clearly printed, I had no trouble finding the school at all, and I was delighted by what I saw: children playing soccer, a beautiful, green campus, and plenty of parking. I was able to locate the building in which I’d have to check in, but I decided that I didn’t want to venture too much further onto the campus. I wondered whether someone might ask me whether I needed help, and I was anxious that I wouldn’t know how to respond. I don’t know sign language yet, and since I was wearing my headset, I wouldn’t be able to speak to anyone, either.

All the same,  I was quite pleased to have found the campus without difficulty, so I turned around and headed for home. The key words here are turned around. Turn me in a direction different from the one in which I’ve started, and I’m lost. (And yes, I mean that literally as well as figuratively.) Unfortunately, I hadn’t printed out the directions in reverse, so I was left trying to figure out how to reverse them in real time. I always have a problem with this task, but most of the time, I deny that it’s an issue at all. This time, the denial resulted in my getting lost less than a mile from my house. I needed to stop and think very hard, several different times, about how to read my instructions backward so as to find my way home.

Since I cannot create a mental picture of any route I’ve ever taken, all I could do was to work with the printed text. By the time I was close to my house, I’d finally figured it out. I realized that all I had to do was to start from the bottom, reverse each direction (changing Left to Right and Right to Left), and apply it to the street name in the step above it. Here’s how it looks for the first two turns in a homeward direction (reading from the bottom up):

7:  Turn LEFT onto REDWOOD ST.

                 LEFT
8:  Turn RIGHT onto HAZEL ST REDWOOD ST.

                RIGHT
9:  Turn LEFT onto LILAC DR  HAZEL ST.

I was am kind of exceedingly proud of myself over this bit of magic.  I deeply envy admire those who can hold the image of a route in their minds, but for someone as directionally challenged as I am, another strategy is a necessity. Happening upon the logic of how to reverse course was an incredible relief.

© 2009 by Rachel Cohen-Rottenberg

This week, my 93-year-old father-in-law was joined by his 90-year-old sister in sending out love and support to Bob and to me. With her permission, I’m sharing the email that Bob’s aunt Charlotte sent to us. She lives in California and is the person whose 90th birthday party Bob missed in August.

Here is her email:

“Dear Bob and Rachel,

How I wish I lived closer to you.  I have all this warmth – so many  
hugs – and I think you could both use some right about now. I’m really  
sorry both of you missed my party. It was an interesting gathering of  
many parts of my life and you two really belonged there.

But I do understand. Reading Rachel’s blog – and some of the others as  
well – gave me new insight into the world in which people with autism  
live. I had no idea. Having learned a bit about it does help me  
understand why Bob was unable to leave at this juncture. I admire your  
plans to find other resources so that Rachel can be more comfortable  
not only if Bob is away but so that her great fear that he might not  
return and she would be without support can also be ameliorated.

For someone who had been as independent as Rachel was, this must be a  
great blow, but to give a name to the changes that have taken place  
must be a great comfort and I’m glad you have a therapist with whom  
you can work things out. I am still so very independent but the day  
will come when I can no longer drive and if THAT terrifies me so, I  
can have just a glimpse of how the world must look to Rachel.

What more to say? I love you both and wish I were nearby to do  
SOMETHING.
OOOXXXAunt Charlotte”

Since we received this message, some of the burdens I’ve been carrying have been lifted from my soul. It’s amazing what a little kindness can do, especially coming from someone who could have reacted angrily to Bob’s absence. When Bob called her to say that he wasn’t coming to California, she said, “That’s all right. The next time you visit, I’ll have more time to spend with you than would be possible at a big party.”

And now, she’s sent just the right message at just the right time. How amazing is that?

© 2009 by Rachel Cohen-Rottenberg