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 in no way trying to dimish what you are saying. But here’s the thoughts your blog stirred in me this moring.
But really, aren’t we all marginalized in some way? It may be because of race. It may be because of appearance, weight, social status, or disability. Isn’t the struggle for acceptance one big push to be in the center, for general acceptence and equality? What’s so great about the center anyway. Really it’s just mediocre by definition. But yet, at some point we’re all angry about it.
But what does our anger do for us? Does it push us to advocate change? Or can we do that accepting our position in culture? Does advocating from a position of peace with ourselves grant us a more palatable voice for the general masses? Or does that further allow us to be ignored?
People like pushing other people into the margins. It makes them feel better about themselves. If they can call someone else ugly, or stupid, or inferior, then they themselves elevate their own position. It’s really an ugly cycle.
But I say, look around the margins, there’s really some fabulous people here. Really it’s all of us, except for those unremarkable people at the top of the bell curve. Do we all really want to be C’s anyway?
Life on the Margins (apologies to the Eagles):
He was a soft-hearted man
He was brutally handsome now, and she was terminally Aspie
She held his hand, and he held her in his mansion, away from the cold of the city
He had a sterling reputation as a cool guy
They said he was a mensch, they said she was fly
They had one thing in common, they were good together
She’d say, “Slow it down, we’re heading for stormy weather.”
Life on the margins, Surely makes you lose your mind,
Life on the margins, Huh
Are you with me so far…
i don’t think that everybody is on the margins. if that were true, there’d be no margins, and i can say for sure, there definitely are. that they’re determined by a kind of conscious and unconscious consensus among the same or the mediocre is a matter of opinion. i’d say there are biological/evolutionary reasons why humans do this, but do it we do. while different nowadays is usually not threatening, our monkey brains don’t know that, and so, we oddities get pushed to the edges. some things seem more clear from here, and there’s ALWAYS someone further out on the margins than you, but margins they be.
it was easier when i was young to pretend that being marginalized was cool, edgy, and hey, i want to be here anyway! (like i had a choice)
it’s not cool and edgy, and no, i really don’t want to be here.
with age has come some perspective. i’m no longer as angry with the society that makes margins and encourages me to live there, but i’m aware of how i got here, and why. there are certain advantages to being here, but i can’t fool myself into not noticing all the things i don’t get to do out here on the margins.
I’m with Melissa on this. The majority of people could consider themselves in the margin for a lot of reasons. However, it’s concentrating on differences in stead of seeing the things that unite us as people that causes problems. For years now I’ve lived with very little contact with former friends. My immediate family is my world and my social life outside it is non-existent. This sounds like something to pity, because there is an expectation in society that people should socialise regularly with people outside of their family in order to be happy. in my life, I just don’t have the time for it, and I don’t even miss it. I’m too busy for that. But if I told myself that I should have things differently, then it would make me miserable. But I choose to ignore that expectation made of me. (People talk about making more time for myself- but with three children under 10 it’s less feasible,without depriving them of my time.)
Before I had my children, I was quite happy being a social butterfly. I really don’t enjoy relative isolation, for it’s own sake.
In your case Rachel, Bob seems to be saying that sometimes he does feels like talking to you, when you’re out and about. He might feel unhappy if there were an expectation that he remain silent at those times. It’s a tough one. The good news is that you do like being together, and that you do want to venture ouside the home together. Bob likes to talk to you, share his thoughts with you (and not with the wider world.) He accepts that you wearing the headphones is part of your listening to your inner voice telling you what you need. He has an inner voice too. There’s got to be a compromise somewhere, without requiring that he makes your margin, his.
It’s absolutely untrue that everyone is marginalized in some way. In the US, white, male, Christian, neurotypical, heterosexual, educated people are not in the margins. There are millions of them, and they wield a great deal of political, social, and economic power. Many of them have nothing but contempt for marginalized people–if they even see us at all. It’s the way they’ve been socialized, and it has a devastating impact on people here and abroad.
There is a vast difference between choosing to be in the margins (because you’d rather spend time with your family than anyone else) and ending up in the margins (because you have a neurological difference that makes you unable to tolerate sound outside your home). I don’t have the choice between concentrating on my home/family and socializing with a lot of people. And that difference means everything.
Bob is fine with spending time together in silence. He has no problem with how we set things up, so long as we’re together and it’s working for both of us. I have spent my whole life seeing neuro-typicality as the norm. Bob is willing to see things from my viewpoint, understanding that nothing is abnormal, although some things are rare. I appreciate the reciprocity. I like seeing the things he does in the outside world, and he likes seeing how things look to me. It’s why we do so well together.
I think that even being mainstream, in a world where so many people are marginalised, is a kind of handicap. It’s a privileged handicap, but it still means that they are outsiders looking into worlds that they can’t quite comprehend. For example how can I, who likes my showers hot, bathe in unheated water like many people do?. I’m not rich, but to some sections of the world population without electricity, my ‘need’ for heated water is a luxury they can’t afford. It’s so relative.
It’s great that there is dialogue between you as Aspie and Bob as non-Aspie. I’m all for an intercultural attitude toward one another. It means that the world is not seen as an entity designed against people with Aspergers, but just that people with Aspergers should have the means to function within it’s framework. I can understand that being bothered by sound could infuriate or disorient you. I wonder whether Bob could choose moments to speak when background sound is at a minimum. Is there a way that you could gently condition yourself to hear increasing volumes of noise? (My daughter can tolerate now, what she couldn’t when she was 4, so something changed along the way.)
To say that privileged people are marginalized because of their privilege simply empties the word “marginalization” of any meaning at all. This isn’t an intellectual exercise; there are real consequences to marginalized people in the form of isolation, harassment, discrimination, compromised mental and physical health and safety, and so on.
Unfortunately, I cannot condition myself to tolerate increasing amounts of noise. I’ve tried the various therapies and they haven’t worked. My system is just extremely sensitive. If I didn’t have to go out every day with a large, conspicuous headset on, I wouldn’t.