Journeys with Autism

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

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