Archive for Belonging

Navigating Competing Worlds: The Elusive Ideal of Normalcy

October 19, 2011 Rachel Ableism, Belonging, Community, Disabilities, Medications, Spectrum Pride

Over the past few weeks, I’ve been very busy with my job and with getting acclimated to the routine of my graduate program. I’ve formed a great connection with the little guy I care for, and in my graduate program, I’m generating lots of ideas and questions as I go along.

For one of my classes, I recently read an excellent article called Orchestrating Voices: Autism, Identity, and the Power of Discourse by Nancy Bagatell, an assistant professor of Occupational Science at Quinnipiac University. The paper is the result of the author’s nine-month process of interviewing and observing Ben, a 21-year-old college student with autism, as he engages in the iterative task of constructing his identity in the face of social stigma and the demands of normalcy. Because it illuminated some of my own struggles and gave me insight into some of the issues that we face as disabled people, I thought I’d share my observations.

In Bagatell’s study, Ben’s struggle for identity goes through three phases:

1. Pretending to be normal
2. Finding the autistic community
3. Navigating competing worlds

Sound familiar, anyone?

Pretending to be normal
Summary: As a child, Ben knows he is different, has little interest in the things his peers are interested in, and is “teased mercilessly.” He initially resists attempts by his parents and teachers to “fit in” and “act normal.” As Ben gets older and wants friends and a girlfriend, he attempts to act in the ways that his parents and teachers suggest, but he has difficulty navigating social situations. The more “normal” he tries to act, the more he feels that something is “wrong” with him, and the more isolated and depressed he becomes. (416)

When Ben goes to college, his anxiety and depression worsen. He sees a psychiatrist who prescribes medication and sends him to a social skills group and psychotherapy in order to help him “fit in.” He begins self-medicating with marijuana, alcohol, and prescription drugs in order to try to navigate social situations. In this phase of his life, Ben relentlessly attempts to control his behavior by pretending to be normal and longs for a cure for his autism. (417)

Ultimately, he finds that pretending to be normal is enormously stressful. He experiences increased anxiety and panic attacks, and he engages in self-injurious behavior. This phase finds its climax when he climbs to the top of a building, intending to commit suicide. The result is a three-day stay in a psychiatric hospital. (417-418)

My thoughts: One of the things that struck me about Ben’s story is the Catch-22 in which he finds himself: the more he tries to “act normal,” the more “wrong” he feels. That is, attempting to attain an ideal of normalcy only results in a pervasive sense of failure.

As a child, I avoided that sense of being all wrong — partly because I was a good student, and partly because I was an athlete. On both counts, success built upon success, and my self-esteem was pretty solid. The trouble started in adolescence, when social situations became more complex, and it was clear that I was not engaging them as other people were. Each year of high school, I chose a different friend to emulate, just so that I could feel that I was getting it “right.” But, like Ben, the whole time, I felt a deep and pervasive sense that something was wrong with me, and that sense only deepened as I got older.

I am very fortunate in that I didn’t end up suicidal. Oddly enough, the abuse I had experienced at home created in me a powerful desire to live. I was determined that I was not going to let the abuse destroy me.

But suicidal ideation is not uncommon for autistic people, and the beginning of Ben’s story is something of a parable about the very significant dangers of the medical model of disability. In emphasizing impairment, it rejects that idea that a disabled person is whole, and thus supports the notion that one must be typically able-bodied in order to be a complete human being with a full and meaningful life. The medical model is a self-perpetuating one: if it is taken as axiomatic that one must be “normal” to have a good life, then most of society’s resources and energy go to attempting to get disabled people cured, assimilated, or out of sight. Very few resources and very little energy go into making the society more respectful and inclusive of diversity, when doing so is the only way to actually enable disabled people to have full and meaningful lives. Ben’s attempted suicide speaks to his instinctive perception that the medical model holds no promise for him. It simply leaves him feeling that he is wrong and cannot be made right, no matter how hard he tries. Under these conditions, he feels that his life is not worth living.

Bagatell notes that Ben’s attempt to construct an identity have led him to consider suicide because he knows that he cannot be “normal” in a society that privileges the normative, and so ends up in a state of self-hatred: “Within the discourse of ‘normalcy’ Ben was a failure… Like many others with disabilities, Ben became ‘tangled up in various forms of self oppression’ (Swain and Cameron, 1999, p. 75). Ben’s attempts at self-punishment climaxed on that April day as he literally teetered on the edge.” (418)

Finding the autistic community
Summary: After he leaves the hospital, Ben attends an autism conference and learns that his behaviors and perceptions are neurologically based, rather than a question of moral will or deviance. He begins to see them as “a normal part of my experience.” Ben meets other people with Asperger’s who have stopped pretending to be normal. He rejects the need for a cure, seeing Asperger’s as integral to who he is as a person, not something that can be “separated out.” He begins to accept and assert himself as he is and to reject attempts to render him “normal.” In so doing, he makes a very good distinction between acting normal and being normal:

“There really is basically no way to teach yourself to be more normal. You can teach yourself to appear normal but you can never really be more normal. And trying to do it is just stressful. I think that’s everybody’s experience.” (419)

Ben sees himself as part of the autistic community, where he can be who he is without attempting to conform to conventional social expectations. He enters and becomes engaged in the shared experience of a world in which he is not marginalized. He listens to the voices of other autistic people who reject the need for conformity in a quest to live an authentic life. He chooses to “come out” as a person with autism and to adopt it as a “valid, positive social identity.” (419-422)

My thoughts: Ben’s experience almost precisely mirrors how I felt when I found the online autistic community. Suddenly, there were other people like me. And for the first time, I felt “normal” in a group of people. It was very empowering and very comforting.

The problem, as I soon found, was how to navigate between the larger world and the autistic community. As grateful as I am to have found this community, and as empowered as I feel by all that I’ve learned, the dissonance between my own emerging truths and the social attitudes toward disability that I’ve encountered in others have been very painful to me. It was one thing to attempt to navigate the world with an interesting neurology I didn’t have a name for; it’s quite another to have become conscious of the issues in play and find that the world is still seriously behind the game in understanding them. This is part of the quandary in which Ben ultimately finds himself.

Navigating competing worlds
Summary: After a time, Ben experiences the tension between the “authoritative voices” of the neurotypical world (in which he is perpetually reminded of the importance of fitting in and, thus, of his perpetual position on the margins) and the alternative voices of the autistic community, which welcome him and let him know that he is fine as he is. He realizes that he cannot just choose between these voices in constructing his identity, but needs to figure out how to perceive himself in both worlds.

Bagatell suggests that we form multiple identities in which to navigate multiple social and cultural worlds, and that the trick for Ben is to figure out how to have a positive identity in each one. (422-423)

For Ben, by the end of the study, the process is not going well. He experiences more agitation, anxiety, depression, and sensory overload. He tends to see both the autistic and neurotypical worlds in negative terms. He does not see autism as a positive, nor does he see many possibilities for love and marriage, even within the autistic community. On the other hand, he is more and more upset that the medical community doesn’t seem to understand autism and that his psychiatrist is constantly “experimenting” with his medications. (423) Ultimately, he seems to see that his problem is social, not medical, asserting that he doesn’t need social skills classes, but true inclusion in society: “’I am sick of social skills groups … . Why can’t someone go to the bar with me or to chess club? That’s what I need.’” (425)

My thoughts: The reality of constructing multiple identities really rings true for me. Earlier in my life, I experienced this process in forming a Jewish identity within the Jewish community, and then attempting to figure out how to navigate the larger society without losing my sense of my own culture. Within Jewish culture, I could use certain words and have my meaning be understood, because we all shared the same basic paradigm; in the larger culture, those same words could be taken to mean something quite different, and I had to choose carefully how to present myself and my ideas. (For example, the word “salvation” means something quite different in Judaism than it does in Christianity. In Judaism, it refers to being saved from suffering and injustice in this life, while in Christianity, it has to do with being saved from hell after death.)

Forming multiple identities is the challenge for people of all minorities who must live within the larger culture. How does one live within different worlds — especially when one world takes a pejorative view of the other? It’s a very complex process. For disabled people, it’s particularly fraught, because the larger society defines us in terms of what we lack, and we tend to form identity in the face of it. Along these lines, Bagatell quotes Swain and Cameron (1999):

“From the viewpoint of disabled people, then, their personal and social identities have traditionally been formed within a framework from which they have been excluded. In defining the parameters that state emphatically what disabled people are not (i.e. ‘normal’), the dominant cultural discourses determine that disabled people’s self-reference is measured against this. (p. 75, emphasis in original)” (418)

The question is, how do we disabled people define ourselves in a context that embraces the deficit model and sees us mainly for who we are not? It seems to me that we always have a choice to make: Do we take in those voices of impairment, lack, deficit, and disease, and see ourselves as people who are “less than”? Or do we define ourselves as whole, as human, as essentially fine, just as we are? And in making this choice, how do we root out the deficit model from our thinking about disability so that we can see ourselves as different, not wrong?

I’d love to hear your thoughts.

—

Sources

Bagatell, Nancy. “Orchestrating Voices: Autism, Identity, and the Power of Discourse.” Disability and Society 22, no. 4 (June 2007): 413-426. doi: 10.1080/09687590701337967.

© 2011 by Rachel Cohen-Rottenberg

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On Language and the Spectrum of Experience

July 20, 2011 Rachel Belonging, Community, Marginalization, Myths about Autism

I tend to tread very carefully in the general discourse about autism, because stereotypes and overgeneralizations abound. Given the wide nature of the autism spectrum, and the varied experiences of autistics and family members, general pronouncements about the nature of autism, as opposed to particular statements about personal autism experiences, generally leave me very frustrated and depressed.

In response to living in a world in which people seem to argue endlessly about which autism is the “real” autism, I’ve made a commitment to reading a wide range of personal narratives. It keeps me from feeling frustrated by the constant generalizing, and it helps me to keep a broad perspective about the wide variety of experience in the world of autism and disability. I am constantly reminded that my experience of autism and disability is not everyone’s experience of autism and disability.

Unfortunately, I recently stumbled across an article that generalizes so dramatically from the specific that it’s taken me over a week to collect myself and respond. The article was written by a woman in my community, Prudence Baird, who has a 16-year-old son with Asperger’s. My husband knows Ms. Baird and has spoken highly of her; I have never met her personally, but she and I are both involved with the local independent weekly. Eager to know more about her, I decided to go to a website for women writers that she helps to run, just to see what sorts of things she writes about.

That’s where I found her article, Naked Motherhood. It discusses autism in highly charged and pejorative terms. (It also discusses the story of Jeremy Fraser, a story about which I have very strong feelings. In the interest of limiting the length of this piece, I’m not going to address those feelings here.)

The terms that Ms. Baird uses to describe autism wouldn’t be a problem for me if she were speaking only to her own experience; as I see it, how she experiences her life and frames her responses to it aren’t open to argument or judgment. However, she takes a giant leap from her experience to very generalized statements about autism that I consider to be highly prejudicial and potentially very destructive.

I want to make it very clear from the outset that I do not believe that Ms. Baird had any ill intent. I do not think she meant to do harm, or that she harbors ill-will toward autistic people, or that she doesn’t see the positive aspects of autism. My purpose is to discuss the impact of her words on me, and to speak to the fact that her words have the potential to do harm, regardless of intent.

Ms. Baird begins her piece with a personal anecdote in which her son is woken from sleep and becomes irate and aggressive:

The popsicle stick-thin figure in rumpled pajamas who is my 16-year-old son stands in the darkened corridor in a fighter’s stance, small white hands clenched into fists. His face, lit by a shaft of light from the laundry room, is contorted with rage at being roused from his slumber—probably by me shutting the dryer door.

…

“Honey, you’re half asleep; go back to bed.” A light touch Casey’s shoulder. Mistake. A tiny fist flies—I duck; a torrent of abuse follows.

“Just shut-up!” yells older brother wrenching open his bedroom door. Then, “Mah-ahm, you don’t ever punish him; he thinks he can get away with this.”

Casey tries to scramble past me, “Fucker! I’ll kill you!” I seize a second jab in mid-air, gently guiding the wrist to Casey’s side as I hold him firmly by the elastic of his P.J. pants.

“It’s late,” I soothe, drawing closed my older son’s bedroom door. “Let’s get you a cup of warm milk.”

But there will be no soothing tonight. The door to Casey’s room slams, and for emphasis, opens and slams harder. I count with eyes closed. Finally, his bed
creaks.

I very much admire that Ms. Baird responds gently and mindfully to her son. As far as I’m concerned, that’s the right response. No argument there. However, I find myself apprehensive about the fact that she says nothing about what her autistic son is going through — why he’s upset at being awakened, why he has such difficulty self-regulating, why he is in so much pain — but concentrates exclusively on her experience and on the impact on her elder son:

I pivot, open the bedroom door of my eldest son who is sprawling on his bed wearing drawstring shorts and Borat T-shirt. His laptop is open to what I hope is homework. He glances at me from under brows stitched together with almost two decades of frustration; a look too jaded for his 18 years.

I well understand that siblings of autistic kids have their own issues, and I am not at all suggesting that Ms. Baird talk about only the subjective experience of her autistic child. I am asking only that everyone’s experience have a place in the narrative.

I worry when I read an obviously well-honed piece, written for public consumption, that does not include any words about the subjective experience of the autistic young man who is at the center of the discussion. Yes, autism can be hard on a family — and it’s also very hard on the person with the condition. I have read innumerable stories about the impact of autism on the family that fail to even guess at the experience of autistic people. Each time I do, I have the same uneasy feeling that I have reading Ms. Baird’s piece — that others will see autistic people merely as burdens and sources of pain, rather than as full-blooded human beings in need of the same empathy and respect as anyone else.

As an autistic person, my heart sinks when read these sorts of narratives. In a world in which the voices of autistic people are so relentlessly ignored, every iteration is another moment of invisibility.

After all, when people read narrative after narrative in which autistics are discussed only with reference to the difficulties of others, the impact on the ways in which people view and treat autistic people can be profound. Many of us have had the disheartening experience of disclosing our diagnoses, only to find that people immediately feel sorry for our family members for having to live with us — even when our family members take great delight in us and do not feel sorry for themselves in the least.

For example, when I was first diagnosed and going through a difficult time, one of my extended family members said to my husband, “Take care of yourself. Sometimes, you know, the caregiver suffers worse than the patient.” I was aghast. Fortunately, my husband clarified that he is not a caregiver, that he is not suffering, and that I am not a patient — that, in fact, he is my husband, I am his wife, and we are very happy together, just as we were before the diagnosis.

Such are the sources of my unease — an unease that turns to outright pain with the next sentence:

“This is autism,” I whisper. “Please. Punishing isn’t the answer.”

As I said earlier, I admire Ms. Baird’s approach to her son; that isn’t what pains me. And I am willing to guess that, in her household, “This is autism” is a shorthand for “This is your brother’s experience of autism.” Unfortunately, because the article was published on the Internet, many people will have no idea of what those words might mean in the context of her family. Many people will only see the words “This is autism” and believe that all autistic people melt down after being awakened, take a swing at family members, and threaten them with bodily harm.

The pain that I feel about it is particularly intense because the person who wrote those words lives in my community, where my Asperger’s is well-known. I wonder whether people who read these words will look at me now and think, “Well, she certainly holds it together well when she’s sitting on her porch, but she must be hell-on-wheels inside her house. The next time I stop by to admire her flowers, I’d better keep my distance and be careful not to set her off.”

They would have absolutely no reason to see me in that light. None at all. But I know that there are people who will see me through the lens of that distortion because, once upon a time, when the only thing I knew about autism were dreadful stereotypes, I thought that all autistic people were scary, too.

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

Like Ms. Baird’s son, I have Asperger’s. Have my marriage and my parenting partnership died “on the rocks of exhaustion, despair, and blind self-interest”? No. Has my autism severed “familial bonds”? No. Has my autism worn down my family with “recriminations, blame, and guilt”? No. Quite the contrary, in fact.

My neurotypical husband tells me early and often how happy he is that we found each other, and how much I help to ground him and to help him feel at home in the world. My neurotypical 18-year-old daughter tells me that I’m the best mother she could ever ask for, because I listen to her, give her unconditional support, and treat her with respect and kindness. My friends find me to be a trustworthy and sensitive person. Like most autistic people, I am neither aggressive nor violent; in fact, it gives me physical pain just to think about people being violent toward one another.

In my experience, we autistics are as different from one another as the members of any other group. I have worked with autistic teens who are quite aggressive; I have also worked with autistic teens who are among the most gentle, kind, and sensitive people I’ve ever met. And, from my association with autism parents, I know that autism families have experiences that are all over the map. I also know that, when they have similar experiences, they can respond to them in a very wide variety of ways.

Consider the following:

Many autism parents have not had their marriages and their families torn asunder. In fact, a 2010 study showed that, in the United States, the divorce rate for parents of autistic children is 36%, while the divorce rate for parents of typical children is 35%.

Many autism parents have found that raising their autistic children has strengthened their families, and has made them stronger and more nurturing people.

Many autism parents feel that if family members and friends distance themselves, it is not the fault of the autism. It is the fault of the people who refuse to make room in their lives and in their hearts for their children.

Many autism parents are living fulfilled lives with autistic children whom they enjoy. Are their lives difficult? Of course. Are they happy? Much of the time, yes.

In short: Many autism parents, after the initial shock of the diagnosis and the steep learning curve that it entails, do not experience autism as a disaster that has befallen them. Consider the words of K, the mother of a son with autism and apraxia, who blogs at Floortime Lite Mama:

I realized that the most important story that I will ever tell, is the one I tell myself.

About me and my life.

And that I am not just the central character of my life

But also the author

Its most important audience

And the narrator

And so the story I started to write, has become a story of gifts and gratitude and love

And not a story of loss and fear and guilt

And I see my child as different, even gifted

And I stopped seeing him as broken

I have come to see the difficulties of my life

But am still deeply aware of its essential sweetness

And I find that I am not living in a sad story

Or a make-the-most story

Or even a second-best story

And that the story that began so promisingly with “once upon a time” does end on a “happily ever after”

Because this is my story

And that is how I write.

These words reflect K’s experiences and how she has framed them. I am not at all suggesting that everyone has the same experiences, or that all autism experiences could, by any stretch of the imagination, be framed in this way. I am simply pointing out how varied our experiences and our responses are. If Ms. Baird had simply spoken in the first person, about her own experiences, I wouldn’t have a problem. Not at all. If she finds her life as an autism parent unbearably difficult, I respect the voice of her experience, and I respect her right to speak honestly about it.

But from my perspective, drawing conclusions about an entire group of people based on a subset of experience is not helpful, to say the least. It’s nothing less than stereotyping. And stereotyping of any group, whether based on race, class, religion, sexual orientation, or disability has serious consequences for the ways in which people are treated at school, at work, and in the community.

Unfortunately, the article continues on in the same vein. I hardly have the words to describe my response to the next paragraph:

Autism makes no sense; there are no navigational tools or comfortable rest stops along the path families must traverse on their way towards the inevitable—when they must blindly entrust their disabled loved ones to the care of others when they themselves are spent, the marrow of their bones turned to dust, and all their loving ministrations poured out onto the dry sand of life’s injustice. In the final analysis, the only real measure of the energy expended is the significant shortening of the mother’s lifespan and the distance the other family members put between themselves and the pain that just won’t go away.

It’s taken me awhile to untangle all the reasons that I find these words so deeply offensive. I will begin by pointing out the obvious fact that autism does not exist separately from human beings. So when people talk about autism in such pejorative terms, they are not talking about a disembodied abstraction.

I am not arguing whether autism is intrinsic to the person or a condition that can be separated from the person. I’m not going to generalize about the lives of millions of people. Arguments on that point tend to be fruitless, because how people render identity is very complex and very personal. I only know how it is for me — I consider autism intrinsic to who I am — but how it is for me is not the issue here.

What I want to point out is the simple fact that autism is always manifested by human beings. In the final analysis, when people talk about their experience of autism, they are talking about their experience of people with autism. And when they make sweeping, generalized, unsubstantiated claims that autism significantly shortens the lifespans of parents and tears families apart, autistic people become stigmatized by association.

Please understand: I’ve got a condition that is already poorly understand and highly stigmatized, and sometimes, all I really want in life is for the rhetoric to become more nuanced, not more strident. All I really want is for people to be able to see me as a human being, without stereotypes clouding their judgment. Because as difficult as it is to have autism, it’s even more difficult to go out into my community as an openly autistic person with this sort of language flying around. And for a great many people I know, it makes it impossible to come out of the closet at all.

In the past, I have found myself very isolated and lonely because I’ve been afraid that other people will believe the stereotypes about autistic people. It’s been terribly painful to go out into the world being my friendly self, eager to help and to be part of my community, only to feel the energy shift in very, very clear ways when I disclose my autism.

Does it happen all the time? Thank God, it doesn’t. I have found many people who take me as I am and do not rely on stereotypes. Sometimes, they even ask me about my experience of autism and how it manifests in me. For my recent job interview, the parents of the little guy for whom I am now a caregiver did just that. But when I applied for the position and disclosed my Asperger’s, I was afraid that the stereotypes would precede me and that I wouldn’t even be considered for the job.

I shouldn’t have to live with that kind of fear. No one should. And one of the ways to create a world in which no autistic person needs to feel that fear is to stop engaging in generalized pronouncements, for good or for ill, about what autism is.

I honor people for whom autism is a gift, and I feel tremendous pain for people for whom it is a curse. But a great many of us tread the vast grey area between the two poles. All across the spectrum of experience, we all need to be heard.

© 2011 by Rachel Cohen-Rottenberg

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A Strangely Ordinary Life

July 28, 2010 Rachel Belonging, Community, Happiness, Loneliness

Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.

Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.

Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.

But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.

Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.

This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:

“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)

These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.

I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.

How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.

What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:

“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)

Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.

© 2010 by Rachel Cohen-Rottenberg

9 comments

Embracing the Social Model of Disability

July 15, 2010 Rachel Belonging, Communication, Community, Disabilities, Self-Advocacy, Spectrum Pride

In my last article for The Commons, our local weekly paper, I wrote about the distance I often feel from the non-autistic world, saying “[I]f you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do.” The feeling was an honest one, and yet, I’ve been troubled by these words from the time I first saw them in print.

I’ve thought long and hard about why, and I finally have an answer. I’ve come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism. I am not actually worlds apart from anyone because I am autistic. I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account.

In the larger world, two models of disability are always in play. The first is the medical model, which posits that something is wrong with me, something from which I “suffer,” something that must be treated and perhaps someday “cured” by medical intervention. In this model, my autism is a disorder, and I am somewhere “over there,” apart from regular folks, separate and unequal.

I have sometimes found myself trapped by this point of view, mainly because I have imbibed about a half-century of negative ideas about autism and the general condition of being disabled. I had accepted without question the idea that all autistic people would rather be non-autistic, and by extension, that all physically atypical people would rather be typical. After reading the eloquent and searing words of many disabled people, I have come to understand that this point of view is a serious distortion. Many, many of us are proud to be who we are and would not want to be different. The Deaf community is a perfect example of a group that embraces its experience of the world as perfectly valid and celebrates its own unique culture. The Autistic community is beginning to do the same.

Of course, there are disabilities that require medical intervention for health and quality of life. However, not all disabilities fit this model and even when they do, they cannot be entirely defined by it. Personally, I have moved away from the medical model, mainly because it tends to create a hierarchy in which some people’s lives have value and other people’s lives do not. It creates a mindset in which we celebrate the lives of some people, while mourning the lives of others, simply based upon physical difference. I do not accept this way of understanding the richness and complexity of human life. I find it unjust and divisive.

An alternative lens through which to view disability is the social model. According to this model, disability is a social construct. That is, one can only be disabled in relation to an accepted norm. So, all the things I value about myself—my acute sensory sensitivities, my deep ability to empathize, my visual acuity, my ability to enjoy silence and a slow conversational pace—become disabilities simply because I live in a culture that does not value them. For example, because I have hyper-acute hearing, I have to wear earplugs when I go downtown or into any sound-filled environment. Until recently, I’ve thought of my hyper-acute hearing as a problem, because I find it very hard to converse with other people in public or to concentrate in the midst of noise.

But my hearing isn’t a problem in isolation. It’s only a problem because I live in a very loud culture—full of noise, full of words, full of TVs and radios and music playing everywhere I go. If I lived in a quieter culture, my hyper-acute hearing would not be a problem. In fact, when it comes to keeping people safe from harm, it would be an asset. In the same way, if I lived in a culture that valued deliberation and a more measured verbal pace, I wouldn’t have the problem of being constantly left behind. In a society in which impulsive action and rapid speech trump other ways of experiencing life, I cannot possibly keep up.

In the face of this mismatch, the only way for me to stay connected to others is to consistently ask for other people to adjust the environment so that I can be present. For example, at one of the stores in town, I ask a staff person to turn off the music when I come to shop, and whomever I ask is always happy to oblige. Everyone who works at the store wants the place to be accessible to me, and and they know that I cannot operate in an environment with music coming from every speaker. Because the staff is willing to be flexible, I have full access, just like everyone else. In stores with loud music playing, the environment is so aversive that I cannot enter, and full inclusion becomes impossible.

Moreover, when I go to my doctor’s office, I use a text-to-text device in order to communicate. Doing so allows me to avoid coming home in a state of auditory overload. My husband and I had to work long and hard to find a doctor open to this form of communication. Because it was a painful, discouraging, and exhausting process, I feel especially fortunate to have happened upon a sensitive doctor. At my last appointment, in fact, something wonderful happened. After we had been typing back and forth for about a half hour, she said, “I’m exhausted. I’m not used to typing so much. Now I know how you feel with your auditory processing challenges.”

And I replied, “That’s amazing. Writing and typing are so natural to me that I forget that other people could find them difficult.”

It was a perfect moment. She understood me. I understood her. I didn’t feel worlds apart at all. I had a different way of communicating during appointments—that was all. My way of communicating was no better and no worse than anyone else’s. At that moment, I became more than the sum of another person’s preconceptions. I felt myself a part of the world, able to express myself fully, with a presence equal to that of every other human being.

So, yes, if you are typically abled, I sometimes feel that we live worlds apart. But it doesn’t have to be that way. If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit. Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one other as perfectly different and perfectly human.

© 2010 by Rachel Cohen-Rottenberg

9 comments

Feeling Freaky

April 1, 2010 Rachel Ableism, Anxiety, Belonging, Community, Disabilities, Marginalization, Stimming

Last night, I had a killer migraine. Usually, when I feel a migraine coming on, I take a tablet of Sumatriptan, which stops the migraine in its tracks. It has always worked—until last night. The migraine didn’t respond to medication at all. By 8 pm, I was so nauseous and shaky that I needed Bob to help me navigate to the living room so I could lie down. I couldn’t bear to open my eyes; any kind of light was like torture. I couldn’t even look at the fire in the woodstove. I had the dry heaves, and at one point, I went into shutdown and couldn’t speak or move at all.

But mostly, for about two hours, I stimmed almost constantly—rocking, hand flapping, hitting my head with my fist, over and over. It actually helped—a lot. I’m not sure how much it helped to reduce the pain, but it certainly soothed me in the midst of it. As I went through the whole ordeal, it became clear that a lot of pressure has been building in me. Some of it has to do with Bob’s daughter, and even more of it has to do with my almost continuous anxiety and my drive to figure things out. My poor mind felt so incredibly tired last night, as though I’d overworked it to the point that it was literally screaming at me to stop.

Once my defenses were down, I finally saw what most of the pressure is about: I feel like a freak.

There, I said it. I feel like a freak. I feel like a freak to the point that I don’t want to go outside and be seen with my stupid headset on, or try to talk to anyone, or do anything out there at all. I just want to hide. Watching how naturally the stimming came to me, and how much it helped, brought the issue out into the open. I thought, “Wow, I’m really autistic. Look at what I’m doing—all those things that I’ve been taught are sick and strange and wrong.” Then I realized that I feel sick and strange and wrong, pretty much all of the time, and I’m exhausted by it. It takes so much work to defend against the feeling, to avoid it, to tip-toe around it, to change it. Last night, I hit a wall of exhaustion, and my feelings about myself came pouring out.

I feel like my whole life is strategy. The spring is here, the days are warmer, and I want to go out and enjoy it all. But how do I deal with the neighbors? Do I take off my headset and talk to them? If so, how often? Will they think I’m anti-social if I don’t? Should I have Bob explain the situation to them? All these questions have been circulating through my mind for weeks, and I can’t find any answers. I’m afraid to try anything. I’m completely stuck.

Feeling like a freak puts me in a terrible trap. If people believe that I’m really autistic, I’m afraid that they’ll see my headset and my silence as bizarre, and they’ll just ignore me, which will make me feel even more isolated than I already feel. If they don’t think I’m autistic, then they’ll think I’m putting on an act. If they only knew that my whole life up to this point has been an act! I wish there were a third alternative, that went something like: “They will know that the way I am is normal for me, and they will meet me where I am.” But I can’t depend on that response, to put it mildly. At the thrift store, they meet me where I am more often than not, but I’m always afraid that all that will go away.

I’m always afraid, it seems. Sometimes, it lays me low, and sometimes, I just carry it and keep going. Physically and emotionally, I feel things so acutely that it’s hard to feel resilient, and it’s hard to know when something will total me.
 
I still want to be normal, so much. Not because normal is better, but because it’s physically easier. I’d give almost anything for one day in which I could do anything I want without risk of overload. I’d give almost anything for one day in which I could keep a conversation with a neighbor going for as long as I want. I’d give almost anything to be able to go to a restaurant or a movie without needing three days to recuperate.

But that’s not my life, and very little has prepared me for who I really am.

Even as I write this, I know that someone will read it and think, “Wow, so I’m not the only one.” And then I’ll remember that I’m not the only one, either.

© 2010 by Rachel Cohen-Rottenberg

9 comments

Contributing to the Local Community

March 3, 2010 Rachel Belonging, Communication, Community, Disabilities, Fiber Art, Making Art, Volunteer Work

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

6 comments

Autism and Self-Worth

February 21, 2010 Rachel Ableism, Belonging, Communication, Community, Disabilities, Loneliness, Marginalization, Spectrum Pride

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

15 comments

Why I’ve Changed the Name of My Blog

February 13, 2010 Rachel Administrative, Belonging, Marginalization, Spectrum Pride

I’m tired of the Asperger’s label.

I’m tired of people using it to distance themselves from other autistic people.

I’m tired of the folks who imply that having Asperger’s makes being autistic okay, but that being autistic is somehow not okay.

I’m tired of being put into some sort of nonsensical order in which Aspies rate higher than other autistics.

I’m tired of division.

I’m tired of hierarchy.

Bev’s latest post says it all for me. And by changing the name of her blog, she’s inspired me to do the same.

At some point, I hope to change my domain name as well. I haven’t figured out the mechanics of using a new domain name and making sure you all can find me there, but when I do, I’ll make the change.

UPDATE: If you’ve found the new URL, you’ll see that I’ve changed my domain name. I’ve specified the proper settings to redirect people automatically from aspergerjourneys.com, but it may take up to 72 hours for the settings to take effect. Argh. Meanwhile, I’ll need to go through and repost all my photos again, since they’re attached to my old domain name.

Note that I also have a new email address: rachel@journeyswithautism.com.

© 2010 by Rachel Cohen-Rottenberg

12 comments

Living in the Margins

January 31, 2010 Rachel Belonging, Community, Disabilities, Marginalization

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

7 comments

Making Friends with My Eccentricity

January 24, 2010 Rachel Aging, Belonging, Friendship, Happiness, Spectrum Pride

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

© 2010 by Rachel Cohen-Rottenberg

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