Archive for February 28, 2011

Audiology and Neurology

February 28, 2011 Rachel Communication, Community, Disabilities, Doctors, Hearing

I had my follow-up audiology assessment on February 15, and my follow-up appointment with a neurologist this morning. I don’t have much to report in terms of answers, but I’m continuing to find insight along the way.

February 15 audiology assessment: I walked to the audiology center, which is a mile or so from my house, and I was in a state of extreme resistance the entire way. I just didn’t want to go through the testing again. It wasn’t an intellectual resistance. In my head, I was interested in knowing how things would come out. The resistance was physical and instinctive. If I were a little kid, I probably would have said, “I just don’t wanna! Please? Can’t we go home?” But I’m an adult, so I kept on walking.

There are only two aspects of my audiology assessments that I like: seeing Beth Ann (my audiologist), and sitting in the sound-proof room she puts me in for the testing.

Beth Ann is a wonderful, friendly, quiet-spoken person who seems to talk at just the right tone and pace for me. She talks very little, too, which makes her very easy to be around. She says what’s needed, and then she gets down to business. She says that she likes when I come in for testing because she gets to use her normal voice; most of her patients are elderly people who are hard of hearing, and she tends to have to speak very loudly most of the time.

And the sound-proof booth? I want one. So. Very. Much.

At this particular appoinment, Beth Ann didn’t even bother trying to talk to me in her office. She did the pre- and post-assessment interviews in the sound-proof room. She figured I’d have an easier time of it. Nice person, eh? I really appreciated the gesture.

But God, did I hate the testing! My body was in a state of major tension the entire time. I just couldn’t wait to get out of there. I saw, once again, that verbal processing—any verbal processing—is very difficult, very tiring, and in some ways, very unnatural for me. According to the latest assessment, some of my scores have gone down, and one went up slightly. Here’s the breakdown of scores since my first assessment in July of 2010:

Frequency Patterns (pattern matching)
July, 2010: Right: 100%, Left: 100%
November, 2010: Right: 100%, Left: 100%
February, 2011: Right: 100%, Left: 100%

Compressed Speech (fast speech)
July, 2010: Right: 52%, Left: 48%
November, 2010: Right: 52%, Left: 48%
February, 2011: Right: 36%, Left: 36%

Speech in Noise
July, 2010: Right: 68%, Left: 80%
November, 2010: Right: 30%, Left: 20%
February, 2011: Right: 36%, Left: 40%

Dichotic Digits (integration of sound binaurally)
July, 2010: Right: 93%, Left: 90%
November, 2010: Right: 65%, Left: 28%
February, 2011: Right: 50%, Left: 25%

Except for my apparently ceaseless ability to do pattern matching, all of my scores are still in the Poor range. The good news is that they haven’t dropped as significantly as they did between July and November of last year, and I’m grateful for that. No one has ever suggested that my hearing will ever be normal, so I didn’t go in expecting miracles.

After the testing, Beth Ann asked whether I had any questions or concerns. My mind was kind of blank at that point, except for fact that I was cognizant of the huge enchilada in the room—the huge enchilada that is so large and so ever-present that I often can’t even register that it’s there.

So, I said, “Yes, I have a concern. How am I supposed to live my life this way?”

It wasn’t as pitiful as it sounds. I didn’t mean, “How am I supposed to get up in the morning?” I meant, “I don’t have a road map here. I do my best to understand what’s going on with my hearing. I take adaptive measures. I advocate for myself. But I feel like I’m doing it in a vacuum. If I were Deaf, I’d have a community to guide me. But I’m completely on my own here, and it’s very difficult.”

She was very kind, and she said that she’d talk with some people at Austine (the local school for the Deaf and Hard of Hearing) and see whether there might be any services or guidance for me. Later on, it occurred to me that there’s a crucial service that she can help me find: counseling from a Deaf practitioner. I need emotional support from someone who isn’t going to give me well-intentioned but useless advice. My last therapist told me that, of course, people wouldn’t approach me because, by blocking my ears, I was communicating that I didn’t want to communicate. I tried to explain to him that, um, no, I was blocking my ears to protect them, and that I wasn’t communicating a thing, except that I have a problem with my hearing. You can guess how that went. It was like saying, “You know, sometimes a cigar is just a cigar,” and being told I was in denial.

I don’t need to listen to that kind of thing anymore. In fact, what I need is a therapist who can help me deal with the exhausting, mind-numbing, crazy-making cluelessness implied by that kind of remark.

And I need someone with whom I can sit and text during appointments and not talk at all. I remember when I used to see my Deaf counselor at Voc Rehab. We’d sign a little and then write back and forth, or use the Ubi-Duo. After awhile, finding employment became secondary to just being in the same room with someone who wasn’t going to exhaust me. It was so peaceful. I came out feeling full instead of empty.

When I emailed Beth Ann about my idea of finding a Deaf therapist, she wrote me back and said, “Wow! I was just thinking the same thing!”

I’ll keep you posted about my progress in this area.

Today’s neurology appointment: Back in November, when my audiology scores plummeted, my audiologist strongly suggested that I see a neurologist “to get to the bottom of it.” I got an MRI right away, which showed nothing wrong. I also scheduled an appointment at Dartmouth-Hitchcock for February 2 (the first available one), but there was a blizzard that day and driving was out of the question. So I decided to see someone in town, figuring that even in a blizzard, I could walk.

The neurologist was lovely. I had gone expecting some high-powered, well-dressed doctor who would rush me mercilessly through the appointment. Instead, she was a very calm older woman dressed in a button-down shirt and corduroy pants that were balding in several spots, and she let me take my time. She did a bunch of testing and basically said, “I don’t see a thing wrong with you—except for the auditory and other sensory issues, that is.” My core muscle strength is good, my coordination is good, my balance is good, and nothing seems to be structurally wrong. She ordered some bloodwork to rule out autoimmune conditions that can lead to hearing loss, but she said that she expects that everything will come back normal.

Basically, she couldn’t explain the sudden drop, but after hearing about my father’s auditory processing and its extreme similarity to mine, she said that it’s probably all genetic. She gave me the option of going to an ENT clinic in Boston, but when I asked whether she thought it was actually worth it to shlep to Boston for more testing, she said, “I’m not sure. Let me think about that.”

I finally said to her, “You know, whatever is causing the drop-off, no one has ever breathed a word to me about it getting better. I think it’s good that we rule out really serious stuff that could be causing it, but if it’s something otherwise benign, that can’t be changed, what’s the point? I’ve accepted that my hearing is the way it is. I just need some support for dealing with it.”

She seemed to understand what I was talking about, and we agreed to have another appointment in a month to discuss things further. I got the bloodwork done (after having to flee the building for several minutes because they decided to test the alarm system while I was waiting), and then I came home even more convinced that my next order of business is not medical, but support-oriented.

I’ve got to get some support from a therapist for living with a disability and all the nonsense that the world throws at me about it—including all the ableist stuff I’ve still got to weed out of my own head. And I need some support for becoming more assertive and confident about the adaptive measures I need to take and the ways in which I need to advocate for them. I can’t continue to go this alone. I mean, actually, I can if I have to, and it’s good to know that I’m capable of doing so, but I really shouldn’t have to.

It’s all a work in progress. More later, as the work progresses.

© 2011 by Rachel Cohen-Rottenberg

18 comments

The Misleading Nature of the Deficit Model

February 26, 2011 Rachel Ableism, Alternative Theories of Autism, Empathy, Modes of Thought, Myths about Autism, Spectrum Pride

Those who danced were thought to be quite insane by those who could not hear the music.
—Angela Monet

I’ve never been shy about my feelings concerning the deficit model of autism. I object to its focus on “impairments” and its dismissal of our gifts as “splinter skills.” I dislike the hierarchy of human value it implies and, every time it leads a parent to believe that his or her autistic child will never feel love, I want to cry.

Lately, though, I’ve come to feel that the deficit model isn’t simply prejudicial, but entirely misleading.

In my view, the language of deficit hides the intrinsic nature of autism. In my experience, autism is not a condition of deficit, but of overabundance. I’ve never viewed my difficulties as deficits, because I spend a great deal of my daily energy dealing with an experience that is laden with perception and feeling. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world: color, texture, pattern, and motion. I have a vivid emotional and visual memory, both for events that have just occurred, and for experiences long past. I feel other people’s emotions immediately upon meeting them, and it’s in my nature to see things from a multiplicity of points of view.

When I look at autistic people who have been deemed “low-functioning,” I see people whose sensitivities make me look absolutely wooden. Our presentation is very, very different and, obviously, I can do a great many conventional things that others cannot. But intuitively, I know that they are not dealing with perceptual deficits. I see people whose overabundance of feeling and perception is both fundamentally different from mine and altogether overwhelming to their ability to function in any kind of normative way.

It’s this relative lack of normative functioning that brings in the deficit model. And, in terms of helping people to qualify for services and obtain needed assistance, it’s not a bad model. After all, if you need a service, you need to be able to document why. The problem is that once the deficit model is in place, it becomes impossible for most people to see beyond it. If you start talking about your internal experience, you get dismissed, because what becomes important is how you appear and what you do, not who you are or what you feel.

And how you appear is generally what shows up on an assessment, because the questions are geared to the surface level, and not much else. So, for example, if one were to ask whether I hold tenaciously to my own feelings and ideas, it might appear that I have difficulty seeing multiple points of view. But part of the reason I am so tenacious is that I’ve gone through a process of looking at things from so many different points of view that I would drown in the sea of other people’s perceptions if I didn’t make a judgment as to where I stand and what I believe. In arriving at a conclusion, I work through an immense number of possibilities and, once I’ve gone through the process, I generally form a strong opinion. It doesn’t mean that my mind is closed; it means that I’m not going to be convinced out of an idea or a feeling simply for the sake of social form or expectation.

Apparently, because I hold firmly to my conclusions, I can appear to be unempathetic to those who do not think as I do. If people only knew how intuitively I bounce from one person’s perception to another, how intensely I feel other people’s feelings, and how much mental and emotional discipline it takes to parse experiences that aren’t even on most people’s radar, they would see that my way of thinking is anything but inflexible—or easy.

Fortunately for me, I can speak, write, and express my internal life to other people. Where would I be if I didn’t have words? Where would I be if I weren’t able to navigate the world in a language it understands? Then I’d just look like a walking deficit model. And people without the empathy to see what’s going on below the surface would call me unempathetic, incapable of seeing things from other points of view, and without feeling. And they would be very, very wrong.

In describing autism as an experience of abundance, I don’t want to minimize the difficulties of living a life of intense perception, especially for those who cannot function in conventional ways. What I want to do is to signal that far from lacking the basic essentials of humanity, we feel our humanity acutely, and we suffer when others choose not to honor it.

© 2011 by Rachel Cohen-Rottenberg

23 comments

Resisting Stereotypes

February 24, 2011 Rachel Ableism, Disabilities, Marginalization

Recently, our local weekly paper ran a column about the roots of violence in the United States, particularly with reference to the bloodshed that took place in Tucson last month. While I agreed with the author’s take on the ease with which one can acquire all manner of weapons in this country, I was unhappy with the ways in which her column perpetuated stereotypes about people with mental illness.

My response appeared this week. I’d love to hear your comments.

© 2011 by Rachel Cohen-Rottenberg

30 comments

On Difficulty and Disability

February 23, 2011 Rachel Aging, Disabilities, Hearing, Self-Advocacy

Difficulty is not a welcome concept in our culture.

Everything is supposed to be easy. We have commercials that promise us a life of comfort. All we have to do is buy the right recliner, drive the right car, follow the right weight-loss program, or purchase the right labor-saving devices. The most valued people in our culture are young and able-bodied because, let’s face it, life only gets more difficult with age or disability.

The difficulties are physical as well as social. As much as I value who I am, I am not one to say that my disabilities are physically easy; add in the constant necessity of self-advocacy and the frequent experience of exclusion, and I’ve got a life that doesn’t come close to the ideal of ease and comfort that every advertisement tries to sell me.

It’s becoming clear to me that a great deal of our culture is based is the lie that life is supposed to be easy. And I’m coming to feel that this lie, in itself, is responsible for a great deal of the struggles that we face as disabled people.

While I’ve had the unbelievable privileges that come with being white, American, middle class, and educated, I’ve also had my share of hard times. For most of my life, I’ve gotten through the hard times by thinking, “Well, next year (or when I graduate/get married/have a baby/buy a house), life will be easier.” Sometimes, it has gotten easier (before it’s gotten harder again), but lately, life just feels plain difficult. My hearing condition take a lot of energy, a lot of discipline, and a lot of work. It is what it is. There is no changing it. At some point, I might grow so accustomed to my disability that it feels easier to carry, but I’ve stopped setting my sights on that mythic day. It might come, and it might not. Who knows? At this point, I have to stay with what is. I am much more in the present moment than I have ever been, simply doing the work that needs to be done.

But sometimes, I still catch myself thinking, “What the hell happened? Life is supposed to be easier.” And trust me when I say that thoughts of how life is supposed to be make the life one is actually living so much more difficult. The dissonance between the ideal and the real is both draining and painful.

And so, of late, I’m coming to accept that life is difficult. I think it’s difficult for most people on the planet. In the rich countries, we get desensitized to this fact—partly because we’re promised a “happily ever after,” and partly because a lot of people in the rich countries actually have it pretty good a great deal of the time. So, because many folks don’t see the kinds of lives that most people live, they become unfamiliar with the idea that life is full of harsh and painful things. And when they come up against those harsh and painful things in their own lives, they panic, because nothing has prepared them for the inevitable storm.

I’ve come to feel that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing. Our very existence flies in the face of the myth that, with the right combination of hard work, positive thinking, willpower, and possessions, life becomes what it’s “supposed” to be: safe, easy, and fair. Our interruption of the cultural myth is one of the reasons that all disabled people, at one time or another, have the experience of feeling invisible, even when in plain sight. It also explains why our attempts at inclusion are met with everything from good intentions that miss the mark to the mind-boggling experience of outright hostility.

If you weren’t born with a disability, but you live long enough, aging is sure to take you out of the camp of the typically able-bodied. Dealing with that change, at an advanced age, can be very hard. For the past few years, my husband has been going down to New York City, on a regular basis, to visit and care for his dad. At 94, his dad is fortunate to be able to live in his own apartment but, as the years have gone by, he has lost more and more of his ability to do the things he’s always done. These days, he is physically very frail and requires a great deal of assistance. Every time Bob visits, he hears his father’s constant refrain: “I’ve lived a charmed life. It wasn’t supposed to end up this way.”

And I hear him. I really do. Despite all the work I’ve done, I’ve heard those words coming from deep inside me, too. In these past several years, I’ve said to myself many times: “This is not how things are supposed to be.” So many of us are unprepared for the harsh realities.

In many ways, I’m lucky to be struggling with these realities at 52. It would be much harder to face them, for the first time in my life, in my 90s. I’m fortunate to be learning that, while it’s a long road from pursuing ease to grappling with difficulty, it’s also a long road from life being difficult to things being impossible. There is a pervasive tendency in our culture to elide the two, as though any difficulty is simply out of the question. From this confusion of the difficult with the impossible comes the trope of the “inspiring cripple” (and its counterpart, the “inspiring caretaker”). It’s as though typical people look at us and think, “Oh, you are so inspiring! If that were me, I would find it impossible!”

Sometimes, when I run across this kind of thinking, I just want to shout, “No, no, no! As long as we’re alive, difficult is not the same as impossible!” The two may look like the same thing to an outside observer, the two may even feel like the same thing in most people’s experience, but they are not the same thing. At all.

We learn to adapt. I’ve adapted quite well and found a number of creative ways to work around my difficulties. I can’t say that I’ve adapted to being treated in all the ways that disabled people are treated in this culture, but give me time. I’m working on it.

© 2011 by Rachel Cohen-Rottenberg

25 comments

Introducing Dakota

February 22, 2011 Rachel Pets

We’ve had our new cat for about six months now, and I’ve been remiss about introducing her and keeping you updated on her antics.

Her name is Dakota, and she is a four-year-old tabby mackerel cat that we found at the local animal shelter.





Here are the top ten things you need to know about her:

1. She is the most vocal cat on the planet. The cat meows almost constantly, and makes a number of other sounds that I can’t describe or even translate. She’s not as loud as a barking dog, but she’s as tenacious.

2. She spent the first two days in our house under the livingroom sofa (except for litter box breaks, which seemed to take place entirely at night). To keep her from going hungry, we had to put her food right by the sofa.

3. If you make any sudden moves while she is present, she will bolt from the room like a rocket. And by sudden moves, I mean laughing, shifting position on the couch, coughing, putting down a plate, picking up a water bottle, and anything else that doesn’t fall under the headings of sitting absolutely still or moving in extreme slow motion.

4. She enjoys affection, but on her terms only. She will meow at you like crazy to come and pet her, but if you make a move in her direction, she will run away. Instead, you must hold out your hand in mid-air, palm facing the floor, with your fingers wiggling, and allow her to place her dainty head under your hand.

5. If you attempt to pick her up, she will treat you like you’ve just come from the pound to take her away. Don’t attempt it, unless you have to go to the vet or she’s gotten out of the house.

6. She prefers strangers who are women to strangers who are men—meaning that if you are a guy and walk into our house, she will hide, but if you are a woman, she will simply run to the other side of the room.

7. She will meow at you persistently for her food in the morning, and then, when you put it in the bowl, she will run away from it and follow you into the livingroom.

8. If she sees you coming in her general direction while she is eating, she will run away.

9. She came to us a skinny little thing, but then her new Jewish mother gave her too much food, and she became rather zaftig. She is now moving into the happy medium of svelte.

10. She is the most aware, focused, and intelligent cat I have ever had.

© 2011 by Rachel Cohen-Rottenberg

19 comments

Holding the Space for Others

February 13, 2011 Rachel Community, Happiness, Spiritual Beliefs

I’ve been having a crisis, of late, about my place in world. Kind of a big, high-flying topic, I know, but I seem to have somehow brought it down to earth today.

Whenever I try to explain the crisis, I have difficulty finding words that don’t make me look like a total schmuck. So I’ll just say it outright: I don’t feel particularly important in the world.

Now, before y’all start telling me that I am important, let me just stop you in your tracks and say, I know I am. We all are. We all have a purpose in life that no one else can fulfill. But it’s the definition of important that’s changed drastically for me, and the difficulty of letting go of the old definition is a measure of how completely bankrupt it really was.

The old definition had to do with achievement and recognition. For me, it was never one or the other, but both. I’m sorely tempted to list out all my achievements for you, and all the ways I’ve been recognized for them, but that’s the problem. I want to list them out, to be impressive, to say, “Look at me! Look at me! See how important I was…I mean, am!” But I won’t. Let’s just summarize and say that it has to do with my education and my work life, and leave it at that.

And all that is largely in the past. I want to get another master’s degree, partly for the sense of accomplishment, but mainly because there are a lot of things I’d like to study, and a master’s program would be a good structure in which to study them. But recognition? What’s it going to buy me, exactly? What do I really want?

What I want is some peace in the midst of all of the storms. I want to be able to have my outrage, speak my piece, and then have my peace. I want to fight the good fight and, whether I win or lose, know that I’ve won, because I did what was right. And I want to just live my life, and not worry about how I’ll deal with whatever the next storm happens to be.

Some time ago, I went to see a healer who told me that every soul brings into this life an error in perception that must be healed. I’m not so sure about that—I mean, how can one be sure about spiritual matters?—but I was willing to listen and see whether there might be a truth in there for me to pursue. She then proceeded to tell me that my soul’s error was to believe that I could not handle whatever came my way.

She nailed it. She absolutely nailed it. I don’t know whether I’ve accumulated this error over several lifetimes, or I just inherited this fear from my parents, or what, but I really don’t care. Somehow, I’ve gone after achievement and recognition all my life because I thought that it would protect me against all those difficulties that other people have to go through.

Not me. Oh, no, no. I’ve had enough difficulty for one life, thanks. Other people can take it from here. Not too much entitlement in my thinking there, eh?

I seem to have gotten past that foolish idea. Or, better said, life has seen to it that I get past that foolish idea. I’ve been through a lot of difficulty over the past 10 years. I feel like I’ve been stripped down to my essentials. It wasn’t anything I could have avoided. I didn’t cause it, and I couldn’t cure it. It all just happened. It’s as though life said, “Welcome to the human race, Rachel. Nice to see you’ve finally arrived.”

So here I am, needing to find another way to have peace. I know that part of having peace is to walk a spiritual path, and it’s been a long time since I’ve done that mindfully. But for me, having peace means more than that. It means finding purpose, and in the absence of all the Big Important Things I used to do in the world, I’ve been wondering what on earth that purpose could be. And then I started tripping over it, again and again, until I couldn’t miss it.

It started this past Thanksgiving. My husband was spending the day with his kids in Colrain, and I was spending the day with a friend. The plan was to get together at my house, have some food, and watch a show. I wasn’t planning anything grand, but I offered to make us dinner. My friend has a number of sensory sensitivities regarding smell and taste, and she warned me that, whatever I might make, she might very well not be able to to eat it. She said that she’s used to having to bring her own food, and that I shouldn’t feel badly if she couldn’t eat mine.

She clearly felt worried that I’d be feel insulted or annoyed, so I let her know that it was totally fine, and that since I was going to make myself a nice dinner, I’d just make double, and she could have some if she wanted to. So, Thanksgiving came, and I made some chicken and potatoes. I fixed it in a way that she liked, and we watched a movie while it was cooking. When it was time to eat, we came down to the kitchen, and I brought the food into the dining room. I was yacking about something or other, when I looked up and saw my friend frozen at the threshold of the dining room, looking really scared and upset.

I asked what was wrong, and she said she felt embarrassed, but somehow, she just couldn’t look at the piece of chicken on the bone; the thought of it having been a bird was freaking her out. She started to cry. Now, I know for a fact that your average person would have said, “Oh, for goodness’ sake. Don’t be ridiculous! It is a bird. Deal with it!” But I have had people say just those kinds of dismissive, insensitive things to me too many times, and it just isn’t in me to go there.

So I just went over and gave her a hug, and asked what I could do to make the situation work for her. She asked me to take the chicken off the bone and cut up the chicken into small pieces, so I did just that. And while we ate, I blocked her view of my chicken pieces so that she could enjoy her meal. And she was happy. I mean, really, really happy, in a way that only those of us who feel uncomfortable in most places in the world can truly understand. It was a small thing, but no small thing. After all, what’s more important than people feeling safe and respected?

And then I really saw it: This is what I do. I hold safe space for other people. I deserve no credit for it, any more than I deserve credit for being 5’1″, because it’s just instinctive. I know that it’s not in any job description or degree program on the face of the planet, but it’s what I do, and I do it well. It’s the reason that during my daughter’s growing-up years, all the children having difficulties at home ended up gravitating to our house. It’s the reason that my daughter’s best friend is now living with us. Yes, I now have two teenagers, born a little over two weeks apart, living in my house, sharing a room. And I’m ecstatic to be able to do it.

It’s not that there won’t be challenges. Any time you get people living in a house together, there are challenges, but I have a better sense of how to approach them now than I’ve ever had before. Some time ago, on Diane’s blog, we had a discussion about the difficulties we have when our kids go through tough times and we can’t solve things for them. So many of us who are “fix-it” moms have just this problem, and in responding, I realized that I’d already come upon the solution. Here’s what I wrote:

I know that feeling of “needing to be needed” and being the fix-it person. It probably accounts for why my daughter’s entrance into the teenage years provoked such a crisis in me. It’s not as though I had to let go all at once, but at some point, it hit me very hard that she was going through things that either she didn’t want to tell me about, or that I couldn’t fix even when she did. After all those years of intense child-raising and homeschooling, adjusting to her being at school all day and entering that phase of life in which she just didn’t depend on me so much was really hard.

The thing I figured out, which might help here, is that I’m still very much needed, but it’s more like “need in waiting.” I’ve joked for a long time that my job has become to knock on Ash’s door, say “Hi, hon. Need anything? No? Okay. Going now.” And if I just concentrate on those few seconds, it’s awful. I feel obsolete. But then I realized that what I’m really doing is holding the space in the house for her to walk into when she needs support, or wants to talk something out, or wants to share something. It’s a critical job. I think our kids really need us to hold that space in order to feel secure, and it’s pretty much a full-time job, since it entails taking care of ourselves and being present to what’s going on.

It sounds like you and I both need to know what our “job” is at any given time, and sometimes the job is just to create the mother space, you know?

I had no idea when I wrote that how much holding the mother space was just one iteration of what I do, but now it’s clear. The other night, when I met up with some fellow autistics in town, I offered my art studio space to a guy who wants to do some programs with kids on the spectrum. I let him know that the space would be there, and that he didn’t need to feel hesitant about asking for it. I was also able to articulate that, while I can’t do all the face-to-face things in the world I once did, I am very good at organizing things and supporting other people as they find their way. Later on, he told me that a lot of the anxiety he’s been dealing with for awhile began to dissipate after sitting with us and getting that kind of support.

It was music to my ears.

Truth be told, though, it’s kind of a strange job, holding the space. I mean, I keep thinking, I should be engaging more. I should be more assertive. I should, somehow, demand a place in the center, at least some of the time. But that’s all nonsense. I do have a place in the center. We’re all in the center. I don’t need to keep fighting for space with people. When I feel the need to compete for space, I’ve stopped creating spaciousness, and that’s what I need to do.

I don’t need to have a big physical space to do it, either. It can happen anywhere, and it does.

But I worry, sometimes, about who will hold the space for me when I need it. And then I think, I will. And my husband will. And my daughter will. And my friends will. And you all will, because you all do.

© 2011 by Rachel Cohen-Rottenberg

38 comments

Guest Posting Today

February 7, 2011 Rachel Guest Posts

I’m guest posting today over at Claire’s blog, Life With a Severely Disabled Child. My post, Privileging the Visual, discusses the ways in which our culture’s emphasis on the visual presents difficulties for disabled people, whether our disabilities are visible or invisible.

Claire moderates all comments on her blog, and she keeps the discussion safe and civil. We’d both love it if you’d come over and join the conversation!

© 2011 by Rachel Cohen-Rottenberg

12 comments

On My Solitary Way

February 2, 2011 Rachel Solitude

One of the enduring patterns of my life is my on-again, off-again relationship with conventionally structured organizations of all kinds: corporate, political, and religious.

In the on-again phase, I join up in order to find community and purpose. I’m on fire with the cause. I’m changing the world. I’m part of something important. I’m going to find belonging at last. Glory halleluyah!

In the off-again phase, I realize that I’m not suited to conventional organizational life because of my most enduring and valuable quality: I am a fierce human being.

When I’m attempting to be part of the structure of an organization, I try to hide my nature, even from myself. I do everything within my power to subjugate it to my quest for belonging. I attempt to negotiate with it. I try to hammer it into compliance. I attempt to bribe it, talk it to death, and rock it to sleep. But when all is said and done, my fierce nature struggles its way out of the smothering cocoon in which I’ve bound it, and then my time in the organization draws to a close.

Sometimes, I just take my toys and go, and sometimes, there’s drama. But always, there is a particular turning point that signals that I might need to start looking for the door. Something happens, and while others pay it no mind, I feel it intensely. I’ll usually try to wait it out and see whether the situation improves. Sometimes, I’ll actively try to work it out, for shorter or longer periods, depending upon the context. But ultimately, I find myself at an impasse. The situation won’t change, and my feelings about the situation won’t change. That’s when I decide to go.

I would like to be able to report that, when the moment comes, I feel tremendous liberation and relief. But I don’t. Those feelings come later. At the moment of leaving, I feel a deep sadness. And that’s when the blaming-everyone-else phase takes hold:

“Why is no one listening? Why does no one care? Why does no one else see it as I do? What’s the matter with these people?”

And then, like clockwork, the self-deprecation phase begins:

“What’s wrong with me? Why can’t I keep my mouth shut? Why can’t I be like everyone else? Why am I always an outsider?”

It’s a fun place to be, let me tell ya. And all of it—all of it—is a mere distraction. When I finally part ways with the people with whom I’ve been struggling, one truth becomes clear: we’re fundamentally different souls destined to do fundamentally different things. There is no changing it. They don’t see what I see, and they don’t understand where I’m coming from. Throwing more and more words at the situation in an attempt to close the gap gets me precisely nothing, except upset and exhaustion.

We may share the same politics, or religion, or technical interest, or cause, but that commonality masks a huge difference in outlook and approach. Attempting to join hands on the road to happy destiny only means that someone is going to get dragged, kicking and screaming, to a place they just don’t want to go. The result is not a happy outcome, for anyone.

When I’m going round and round and round in my mind in the initial stages of such a debacle, I’m not facing up to the core truth about my life: I am on a solitary path. That’s my karma. That’s my life lesson. That’s why these forays into joining up with conventionally structured organizations just don’t work. I’ve gone off my path entirely.

The necessity of travelling the solitary path has been the core lesson of all my losses. Over the course of my life, the losses have come thick and fast, and now they’re all crying out at once to say, “You must find the strength to travel this road. Stop arguing. You have no other choice.”

Now, don’t get me wrong. The solitary path does not wind through an unpeopled landscape, and it is not an escape from engagement with the difficulties of the world. There is still much work to be done and much struggle to be had, but they take place in a context fundamentally different from an external organizational one. And, of course, I have many, many fellow travellers, each travelling their own solitary paths as well.

Could you call us a community? Sure. Call us a community in motion, weaving ceaselessly through one another’s lives. We’re the people who speak the truth, without sugar-coating of any kind, even though few people are happy or comfortable with us when we do. We question and confront authority without apology or shame. We chafe against ideological or political conformity. We value individuals over organizations, and we are each our own leaders.

As we travel down the road, we greet each other every day and, when our paths run close by one another, we talk about our struggles. We support one another. We listen to one another. We strengthen one another in the midst of the difficulties of the moment, when the loneliness feels unbearable because so few people understand. And somehow, we always find one another. Always. Even when the darkness descends and we feel we can’t go another step, we find one another. We call out, each in our own voices, and we hear others calling out in return.

And so I write. And write. And write. And sometimes, I think that’s not enough. Sometimes, I catch myself feeling that I want to be part of something bigger, better, more important. But there is no such thing. There is only the illusion of it. After all, what could be more important than doing what I was born to do: speaking in my own voice, in my own way, for my own reasons, under my own power?

And if one person reads my words and gets something out of them, I’ve done my job well. After all, one person isn’t simply a mark on a census form. One person is, after all, an infinite universe.

© 2011 by Rachel Cohen-Rottenberg

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