Disability and Representation

Changing the Cultural Conversation

Why Is My Cane a Topic of Elevator Conversation?

Apparently, questioning my use of a cane has become a go-to topic of conversation when I’m riding the elevator in my building. You’ll remember that it happened a couple of weeks ago. Yesterday, when I got home from vacation, an older gentleman walked into the elevator with me and said, “You walk awfully well to be using a cane. You sure you don’t just use it to beat off the guys with a stick?”

Okay, so I got the two implied compliments: you seem to be able to walk well (although why that’s the source of a compliment actually escapes me) and you’re so good looking that you have to defend yourself against too much attention. I can’t say I was offended, exactly. That would be too strong a word. The guy was just trying to make conversation. What I felt was more like boredom mixed with annoyance: boredom because people need to start changing up their themes when it comes to making small talk with me, and annoyance because I was really floored by how free he felt to talk about something as personal as my body.

Now, I don’t mind if someone I know well says, “I see you’re using your cane today. Are you having difficulties with your hip?” or “I see you’re not using your cane today. Is your hip doing well?” And by someone I know well, I mean someone who would visit me in the hospital if I were sick and bring me flowers. Those folks can comment. Everyone else is just breaking a boundary.

Anyway, after I heard this latest iteration of “What do you need that cane for?” I just paused, looked at the guy, and said very seriously, “The cane helps me.” I didn’t really care whether he thought I meant “helps me walk without pain” or “helps me defend myself.” I just cared that I said something to deflect the intrusion.

Next time, I might just roll my eyes and then stare silently at the person until we get off the elevator. These comments are getting old very fast.

© 2014 by Rachel Cohen-Rottenberg

When I Ask For an Assistive Listening Device, Feel Free to Treat Me As a Full-Fledged Person

This afternoon, my husband and I went to see a matinee in town. We went to a particular theatre to see it because they have assistive listening devices for all of the movies there. These devices are glasses that provide closed captioning by means of a wireless signal. We got there early so that I could request the device.

I talked with the manager about what I needed, and after about 10 minutes, she gave me one — and proceeded to speak to my husband about how to use it, even though I was the one who had requested it, and even though I was the one to whom she had handed it.

It felt like a punch in the gut. I had clearly been speaking to the woman, I had clearly been understanding her speech, and I had clearly responded purposefully to her. There was no reason on this earth that she should have been addressing my husband when he was not using the device himself. At one point, she even said, “Your wife shouldn’t have a problem with it” while I was standing directly in front of her and he was standing to the side.

Interesting how I became a second-class citizen after asking for an assistive device. Is there something about the device that made me phase in and out of view, I wonder?

I know, I know. This is standard in the world of disability. I know so many people who have these experiences — people who use wheelchairs, blind people, Deaf people, all kinds of people with disabilities who talk about others addressing their partners and not them. Because most of my disabilities are invisible, I’ve never had it happen to me so blatantly before. I’ve had other microaggressions happen because I use a cane, but this is the first time I’ve encountered this particular kind of disrespect.

I have a feeling it won’t be the last. When I find myself in these kinds of situations, I’m going to have to say, “Eyes over here, please. I’m the one you need to be talking to.”

© 2014 by Rachel Cohen-Rottenberg

So, Do You Really Need That Cane? Why, Yes. Yes I Do.

I found out this spring, after a series of muscle spasms that left me crying on the floor, that I have a pulled ligament between my spine and my hip. I probably pulled it long ago; my physical therapist said that I could have pulled it in childhood, and that my body compensated for the injury until it just couldn’t anymore.

Before I started doing core strengthening every day, my hip was wobbly and would become over-rotated. Walking tended to inflame it, and I began using a cane in order to take the pressure off it. It worked very well. After having done the exercises for several months, things were feeling much more stable with my hip, so I did an experiment to see whether I could do without the cane.

It worked for awhile, and then I noticed about a week ago that I was feeling some strain. It wasn’t really bad, but I thought it best not to push it and decided that using the cane again would be a good idea. Using it cuts down the risk of re-inflaming the whole area and ending up on the floor again. Plus, I am able to walk with much more strength and endurance when I use the cane. Except for the fact that I was getting used to having both my hands free again, I am really fine with it.

What I’m not so fine with are the reactions to it.

On Sunday, I rode the elevator up to my apartment with a young woman in her early 20s. As soon as we got into the elevator, she said, “Do you really need that cane?”

She said it in such a quiet voice that I missed the intrusiveness of the question. It sounded like a simple request for information, and I was in a good mood, so I answered her with, “Yes. One of my hips get over-rotated and it helps with not re-injuring myself.”

That was probably too much information, but I’m all about substantive conversation, don’t you know? So I just smiled and figured that was that.

But it wasn’t. Of course not. She followed up with, “Well, you were walking really fast.” The implication was that, because I use a cane, I’m supposed to walk slowly and haltingly. At this point, I was still in a good mood, and I decided not to mess it up with getting in her face, so I said, “Yes, I do walk at a good pace. The cane is like a third leg. It allows me to go further and faster than I could without it.”

She looked skeptical. Thank goodness the elevator arrived at my floor before the conversation went any further.

It was one of those conversations that seems benign at the time but bothers you later. Part of it was the intrusion. Part of it was the skepticism. Part of it was the implied demand that I explain myself.

Most of what bothered me, though, was the implication that I had to perform disability in a particular way. I understand that mindset, because I constantly catch myself doing the same thing. I think, “I’m using a cane. That means I have to have a certain kind of affect that communicates that my life is somehow difficult. In fact, that means I have to exaggerate my difficulties in order to make them believable. In fact, it means that I’m old, and fragile, and can’t get very far.” I catch myself at that kind of thinking and I know that it’s ridiculous, because a) my life is really pretty wonderful, b) I’m not in the habit of exaggerating my difficulties, c) I’m no more fragile than the next person in a human body, d) I’m only 55, and e) I love physical labor and can walk 3-4 miles at a time easily.

But the whole notion of what a cane means — and of what disability means — is so narrow and so pre-scripted that someone watches me walking with confidence toward the elevator and questions whether I need a cane at all. I mean, why would I use a cane if I didn’t need it? Does she think it’s just a fashion accessory? Or that I want the best seat on the bus? When you start to deconstruct it, you find that the question is irrational, and it’s irrational because it comes from a view of disability that has nothing to do with the reality of people’s lives.

I wish I’d been able to throw the question back at her. I wish I’d been able to just say, “Talking about my cane is off limits to you.” But I was in a good mood. And I try to be friendly. And I hate getting in people’s faces when I’m just trying to go about my life. But I’d really like to get to the point that less is more. I’d like to get to the point that it’s just out of the question to even tolerate those kinds of questions.

I’ve learned to stop the conversation when it’s about my invisible disabilities. I’ve had a lot of experience with the exhaustion of explaining, and it’s instinctive for me now to limit my responses. But  I’m pretty new to this visible disability experience. The questions are different and I’m not prepared for them yet. But the world is certainly giving me opportunities for practice. I’m hoping that on the next round, I’ll simply end the conversation before it starts.

© 2014 by Rachel Cohen-Rottenberg

What I Have Learned

I have learned that the cruelty of others is never about me. It is always about the people being cruel. I do not have to worry that I caused it. I do not have to consider it a commentary on my own worth. And I do not have to take it in as though it has anything to do with me. Knowing that the cruelty of others is not a reflection on me gives me a great deal of peace.

I have seen and experienced a lot of cruelty in my life, and it always shocks me. I hope that it will continue to shock me, as long as I live, because that shock means that my heart is still open and hopeful and loving.

May you walk through this world of beauty and suffering with the peace of knowing that whatever anyone does, you are worthy of love, dignity, respect, and abundance.

© 2013 by Rachel Cohen-Rottenberg

Inattention to Accessibility: Am I Part of the Disability Community, Too?

I am finding it more and more difficult to use words like “accessibility” and “inclusion” these days. Much of the problem with these words is that they assume an inside and an outside. If you’re “accessible,” to whom are you accessible? And if you’re “inclusive,” just who is outside that circle?

I ask these questions today out of a great deal of personal pain, feeling that very little inside the disability community is accessible to me or inclusive of me. I also ask these questions with a great deal of fear and trepidation, realizing that my already rather precarious position within the disability community could become even more precarious. But that apprehension has never stopped me before. I am, if nothing else, a perpetual outsider, because I will critique just about anything that I feel is out of kilter with stated principles or simply not working. I don’t engage in these critiques because I think my ethics are higher and better. I engage in them because if I don’t, I can’t ethically and emotionally navigate while maintaining my sense of who I am as a human being.

So here goes.

I am becoming more and more aware of how deep and wide is the chasm between my work in disability studies, on the one hand, and my work as a disabled person serving other disabled people, on the other. I split much of my time in disability land between working on a master’s thesis about disability culture and counter-narrative, and serving homeless and hungry disabled people who live in one of my city’s parks. As much as I love the academic work I’m doing — and as much as disability theory in general has enriched my life and my ability to understand all of the many forces that impinge upon it — there is very little connection between what I study and what I actually do in the world. Any time I’ve been in an academic program, this disconnect has troubled me, but it’s quite a bit more problematic when the field of study is about a pervasive political and social issue and not, for example, 19th-century English literature. What I am to make of the disconnect between my academic and social work? My current program, to its credit, emphasizes bringing theory into practice and yet, I find that there are not a lot of role models for how to do so.

In addition to this disconnect (or perhaps because of it?), I find that, even within disability studies and disability culture, I feel a sense of apartness. To begin to describe why, let me direct your attention toward where the last Society for Disability Studies conference was held: Orlando, Florida, just outside the entrance to Universal Studios.

For those unfamiliar with the needs of many neurologically atypical people, may I be blunt? Having a conference outside of the entrance to Universal Studios is rather like saying, “We’re having our conference across the street from the gates of hell. All are welcome!” Does anyone have any idea of the aversive impact of noise, crowds, visual overstimulation, and other sensory assaults that provoke an immediate OMG get me out of here response on the part of a great many of us? I’m not just talking about autistic people. I’m talking about people with a wide array of sensory, cognitive, chronic pain, and fatigue issues. Having a conference in such a place renders that conference inaccessible to many of us.

Apparently, this fact is not yet on the radar, because the conference organizers advertised the venue as the perfect place to talk about our “various realities”:

This year’s theme is “(Re)creating Our Lived Realities.” Playing off our particular location of Orlando– the home of Disney World, Universal Studios, and Epcot Center – this year’s conference theme seeks to explore the myriad ways in which we work to (de)construct the various realities in our lives.

Any place within 50 miles of Disney World, Universal Studios, and Epcot Center is going to be a no-go in terms of a conference for me, because using up all my spoons just to get in the door is not how I see accessibility working.

But then, of course, even if a conference or performance takes place in a more appropriate location, there is the inaccessibility of the conference or venue itself.  For those of us with sensory and social differences, this inaccessibility is not limited to SDS by any means. It is pervasive. There is no thought given to the fact that walking into a venue with 20 or 50 or 100 or 500 people talking and socializing at once before the talk or the performance starts would put some of us into an overloaded, overstimulated, exhausted state. So what choice do we have? Walk into an inaccessible environment that causes pain and exhaustion? Or stay home?

Of course, there is just the appearance of choice here. There really is no choice for me. A performance venue or a conference might have ramps, ASL, CART, and any number of other accommodations, but I literally can’t walk into a sound-rich environment. It’s like a force field. It renders a venue just as inaccessible for me as if that venue did not have a ramp for wheelchair users. Walking into that kind of environment, and actually staying there, would be analogous to wheelchair users dragging themselves up the stairs in the absence of ramps and trying not to look too exhausted in the process. Possible, but hardly dignified, safe, or optimal.

Are my disabilities not as important?

A couple of weeks back, my friend Bill Peace wrote about an experience of being humiliated and excluded as a wheelchair user at the Humanities, Health, and Disabilities Study Workshop held at Hobart and William Smith Colleges.  I shared his outrage over the treatment he received. A lot of people did. But I wonder where the outrage is for people such as myself, who could putatively walk into such a conference, but who could not last more than a few minutes because of the sensory overstimulation, the inability to filter sound, the difficulties socializing in conventional ways. Because let me tell you, if you can’t do those things, you’re not even going to get close to such a conference in the first place.

I have watched for years while some of my peers with visible disabilities are able to navigate the professional disability world in a way that I cannot. Not everyone with physical disabilities can navigate that world, obviously, and these folks are hardly representative, obviously, but they are there and they are quite visible, and they have access because they are neurotypical. I have the intelligence, the drive, the passion, the commitment, all of it, just as they do. But there is this very thin membrane that keeps me from entering into that world, and that thin membrane is all about the fact that I perceive experience differently and have a completely different way of being in the social and sensory world.

It’s a source of tremendous grief for me. It’s like being this close to reaching something and always having it out of reach. I’m an incredibly tenacious person, and my tenacity will not get me past that thin membrane, ever.

So the question of “Am I a part of this community too?” runs very deep in me, and I feel very conflicted about it. On the one hand, I feel that people respect what I do, and I am amazed at the sorts of conversations I’m able to have online in various venues. On the other hand, I’m keenly aware that I am on my own, as I always have been — and I’m cognizant of the limited nature of what’s available to me in the disability community. It’s almost like watching my place in the community phase in and out. Up to this point, I’ve been stuck in the feeling of “Well, that’s just how it is. I can’t tolerate noisy public settings or socialize in conventional ways.” But now I’m thinking, “Wait just a second. That’s locating disability in my body rather than in the environment. Is there some good reason that conferences and cultural events have to be a sensory and social nightmare? Is there some good reason that they end up on the list of inaccessible venues, much like most nondisabled venues? Is there good reason to exclude people for social and sensory differences?”

And the answer is always the same: “No, there is no good reason at all.”

I’m still waiting for the outrage over this lack of access. But I have the feeling I’m going to be waiting a very long time.

© 2013 by Rachel Cohen-Rottenberg

On Brokenness

I’ve been giving some thought to the work “broken” as applied to the human body. For years, I’ve reacted against the word. I’ve seen it as an implied comparison with “normal,” as a judgment, and as a form of devaluation. And it often is. But I’m not sure it has to be, and I’m having a change of heart about it.

Part of what’s driving this change is that I’m coming to terms with my own sense of brokenness. Trauma and loss have broken my old sense of myself and the ease of my trust in other people. A different sense of myself is emerging, and a different kind of faith, but the old sense of self and the old faith have been badly broken, and that is part of surviving trauma. It breaks your heart. It breaks your trust. You don’t put the pieces back together in the same way.

For a number of years, I insisted that everything was perfectly intact, that no damage had been done, that any damage I thought had been done was an illusion. There was shame there for the breakages that had actually occurred. There was shame in believing that something had broken.

My soul is not broken. My soul cannot be broken. But my soul lives in space and time, in a body, and the body hurts when the soul does, and the mind has to deal with loss.

And then there is my physical body — specifically, my back. The working theory is that I pulled a ligament between my spine and my hip at some point in my life.  For a long while, my body compensated as best it could, and I did not even know that anything was awry. I had a little tightness and soreness, but nothing alarming at all. And then, one day, my body’s ability to compensate broke down, my hip got too loose, and I ended up lying on the floor, barely able to move with the pain of muscle spasms all across my lower back. I could barely crawl to the bathroom for pain relievers or lift myself to the freezer for an ice pack – and once I got them, they barely worked. My body’s ability to compensate for an injury – an injury that I might have gotten sliding into first base when I was ten – had ended.

There is something broken there – a ligament that isn’t holding my hip in place. I’m doing all kinds of core strengthening exercises to compensate and hold my hip straight, and they’ve helped tremendously, but the ligament will never go back to what it was, and very occasionally, the pain flares up again. There was also some nerve impingement in the beginning, and a few times, the signals didn’t get to my knees and it momentarily felt as though I didn’t have any. I didn’t fall, but it was an odd and worrisome feeling. It’s one of the reasons that I got a cane — the other one being that the cane gives me a point of reference for walking with my legs parallel to each other and keeps my right hip from over-rotating. When my hip over-rotates, I’m risking a flare-up.

I’m not sure that it’s bad to think about my body as broken when parts of have stopped functioning optimally, although I can feel my mind resisting the whole idea. And I’m not sure it’s bad to think about my trust and my sense of my old self having been broken when it’s abundantly true, although I can feel the fear that arises when I do.

Perhaps the problem is that the word “broken” has such negative connotations. We think of “broken” as synonymous with “Devalue it and throw it on the scrap heap.” That’s what we do in this culture with broken things. We render them worthless and we put them out with the trash. It’s also what we do with people whose bodies don’t fit a narrow standard.

But I’m starting to redefine “broken” as  “Work around it.” Or “Reclaim it.” Or “Get a mobility aid.” Or  just “It is what it is.”

I don’t really want to reclaim every single bodily and mental experience. Some physical and emotional experiences are awful. But I need to be able to say simultaneously, “This experience gives me pain” and “I love this body I live in because it gives me life.” I don’t want to devalue myself or my body because other people have broken my trust, or because the PTSD makes my body hurt, or because my body is fragile and does what bodies inevitably do.

I’m not a thing to be ranked according to whether I meet some standard of “wholeness.” I’m a person who experiences brokenness, just like everyone else.

© 2013 by Rachel Cohen-Rottenberg

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Shunning, Shaming, Renaming

For the past 11 years, I have been shunned.

Not socially rejected. Shunned. By what used to be my synagogue community. For falling in love with my partner. For my partner falling in love with me.

He was serving as the rabbi when we met. After we made our relationship known, people who had formerly welcomed me would not speak to me. I lost my closest friends in the community. Others reacted with hostility to me in public. They put their bodies between my partner and me, blocking our path to each other. They held meetings to vent about our relationship. They responded to my friendliness with walls of coldness and detachment.

My partner lost his job. We lost the spiritual home that we loved. We lost our sense of safety. We had to move away — not once, but twice, because the first move wasn’t far enough.

After 10 years of marriage, we’ve moved 3000 miles away to start again. I am 54 and he is 68.

Starting over one more time wasn’t in the plan. And yet here we are. Together.

——–

Shunning is a form of psychological violence. It brings out all the hidden shame you didn’t think you carried anymore.

Sexual shame. Body shame. There-is-something-wrong-with-me shame. I-don’t-really-deserve-anything shame. The shame you thought you’d dispelled when you faced your childhood. The shame you thought you’d healed when you found religion. The shame that lurks in a culture in which we are never all right just as we are – not really. The shame that is always beneath the surface when the body is always suspect.

It’s a shame that thrives on silence – that proliferates in silence, until you feel shame for even daring to push up against being shamed. Until you feel ashamed of your anger at your silencing. Until you feel ashamed of your resistance against what has been taken. Until you feel ashamed to speak the truth of your own experience. Until opening one door in your soul to let in the light causes three more doors to close because you don’t deserve to live in the light.

Until you feel as though you can’t even breathe.

——-

Shunning creates an absence that is difficult to describe because its hallmark is silence – a frightening, wearying silence. Because others refuse to speak, to acknowledge your presence, to treat you as though you matter, there is no way to respond. A response assumes a listener. How do you respond when no one is listening? Words do not matter. All that matters is the shaming – the unnamed, unnameable shaming.

Nearly seven years into the shunning, I was diagnosed with the disabilities I’d had all my life: Asperger’s syndrome, sensory processing disorder, auditory processing disorder, vestibular issues, dyspraxia. That’s when the language of shame began to break its awful silence and bind my soul with words. Now the shame had names: Deficit. Disorder. Brokenness.

My body was wrong. My body was broken. I would never be right. No matter how many ways I starved my body, how kosher I kept my kitchen, how clean I kept my house, how intensely my empathy flowed, how kind I was to strangers, and how much I loved my family – it didn’t matter. I’d never, ever be right.

The feelings of wrongness that the shunning engendered and the feelings of wrongness that the language of deficit engendered became intertwined. In the light of my disabilities, I began to look at the shunning, and I began to wonder: Had I become a target because my differences, though unnamed, were so obvious? Did people believe that I was somehow less-than? And in my worst moments, I secretly wondered Were they right?

Not only had I been shunned by my community, but I was also entering a whole new identity as an openly disabled person, with all of the social isolation and rejection that came along with it. With my disabilities becoming more apparent in mid-life, I began to realize what most disabled people already know: that the world marginalizes us because of the ways in which our bodies work. I had been able to pass as nondisabled for much of my life, but by the time I was 50, full-time passing was no longer an option. I no longer had the energy. I had to work with my body rather than against it. I had to assert my needs. I couldn’t pretend to be normal anymore. And that put me outside the world as I had known it.

In the face of this dual marginalization, I lived my life in a battle between anger and despair. When the anger rose, I was determined to turn the language of deficit and disorder and brokenness into the language of blessing. If the “experts” said that people like me were hyperfocused on our obsessions, I said that I was passionate about the things I loved. If they said that we had splinter skills, I said that I had talents. If they said that we had deficits, I spoke of brilliant adaptations.

I reclaimed, and renamed, and rejustified my existence.

And suddenly, I realized that it was all wrong. Because ultimately, this reclamation project wrote me out of its script altogether. I was no longer talking about myself. I was talking about the gifts of Asperger’s.

My analytical mind, my focus, my visual acuity, my way with words, my musical talent, my passion for justice, my honesty, my sensitivity, my gentleness: these had always been my gifts. Not the gifts of Asperger’s. My gifts. But they were no longer mine. All those precious moments of pride and work and love and family that had made up the fabric of my life had been stolen from me and made the fabric of a construct I had never named.

The gifts of Asperger’s. The gifts of an abstraction, of a word that a stranger had created.

And as my sense of myself diminished, the shame became such a constant presence that I couldn’t remember what it meant to live without it. I couldn’t taste my food without the shame sticking in my throat. I couldn’t go to sleep at night without it laying down beside me. I couldn’t speak without using words embedded in it. I spoke in the oppressor’s tongue. I thought in the oppressor’s words. I was always ready to flinch, to apologize, to justify.

——-

I sometimes think about the process of healing in terms of uprooting the shame, but I’m not sure whether uprooting is the right word. I’ve been uprooted enough, and I know that tearing out something by the roots tears up the rich fertile earth around it, too. I’m not sure what the right words are. I just know that the unshaming process cannot be done piecemeal. For me, there is no working through the shame, or coming to terms with the shame, or getting past the shame, to use the language to which I was once so attached.

There is only a radical claim to my own body, to my own mind, to my own soul. There is only a radical claim to love my own being – a being to which no one else has the right to lay claim but me.

Perhaps others have the privilege of being able to rely on the names that others give. Perhaps others can readily find mirrors in which they see images that they recognize. But so many of us cannot. So many of us cannot rely upon a world of deficit and shame and apology to give us our names. The words of that world are not our words. They do not speak us.

So I find others who are learning how to speak their own names. I join with others who are unapologetic about how their bodies look, how their minds work, how they experience the world. I journey with others who are rejecting the language of shame and who are learning to open all the doors of the soul to let in the light.

I hope to meet you one day on this road.

I wrote this post in April of 2013 and it appeared on The Body is Not an Apology’s tumblr blog on May 1, 2013. It is reprinted here with permission.

© 2013 by Rachel Cohen-Rottenberg

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Passing and Disability: Why Coming Out as Disabled Can Be So Difficult

Yesterday was National Coming Out Day. I officially came out as bisexual, and it was a celebration. No angst. No fear. No second thoughts. Just a celebration.

It was a such a contrast with coming out as disabled at the end of 2008, with all of the fear and dread that attended that decision. There have been many times since then that I’ve thought that coming out as disabled was the worst decision I’d ever made in my life. If I could have put the toothpaste back in the tube at those moments, I would have.

Of course, I’m a few years down the road now and feel much more comfortable, proud, and confident. But oh, what a process! And of course, the process never ends. I always have internalized shame, and hatred, and fear to root out of my head. And I still have to deal with a  world of people who don’t understand the physical and social experience of disability. But in general, I navigate these waters much better than I did at the outset.

It’s very difficult to come out as disabled, I think, because we face the dual reality that most people a) hate our bodies absolutely unapologetically and b) consider that hatred entirely natural. It’s for this reason that they can use disability slurs constantly and think nothing of it. It’s for this reason that they can segregate and exclude us as though we’re substandard merchandise to return to the manufacturer. It is still considered natural to react with revulsion against us in a way that other groups have fought against more successfully — not entirely successfully, obviously, but more successfully.

Partly, we face this hatred because our culture worships control and denies the fragile and ever-changing life of the body. Partly, we face this hatred because the medical model has taken over as a metaphor for human life. People are no longer evil. People no longer make bad choices. People are no longer victimized by oppression. People no longer act out of ignorance, or selfishness, or greed. No. Now they’re sick, crazy, brain-dead, retarded, mentally ill, have low IQs, and on and on.

In the face of this hatred, it’s very, very difficult to convince people that you love your disabled body because it’s the one you live in. You say that you love your body, and people look at you as though you don’t quite understand your own reality.

My body hurts a lot these days. But I still love it. It’s the body I was born with. It enables me to experience life. Without it, I’d have no life at all. I might not love every sensation in my body, but I love my body, even on the hardest days, because it gives me life.

© 2013 by Rachel Cohen-Rottenberg

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Peeling Back the Layers of Shame: Talking About My Mother

[Trigger warnings for sexual abuse, physical abuse, emotional abuse, shunning, shame.]

Shame is not something that most of us want to hear about. Many of us will listen to stories of any other kind of horror: sexual abuse, physical assault, hate crime, genocide. We consider it an act of courage when people talk about these things, and we give honor to the survivors by bearing witness.

But do we speak and bear witness to the debilitating and destructive nature of shame? Rarely. We fear rejection, judgment, social condemnation, isolation, shunning, so we don’t speak. And when we don’t speak, we can’t get a witness.

Truth be told, we often don’t want to hear about anyone else’s shame because it brings up all of our own. So if you’re still reading, thank you, with all of my heart. I know it isn’t easy to have come even this far.

I’m going to start by going straight into the heart of my deepest shame:

I DON’T LOVE MY MOTHER.

Lest you think my mother was a monster, she was not. I will not shame her in that way. Just to show you how very human she was, here is a picture of us, when I was about two years old. See how utterly ordinary we look? We were. We were just like anyone else. Human. Flawed. Fearful. Full of dreams. Trailed by demons. Capable of fucking things up royally.

circa 1960 mom and rachel But here is what I fear in this conversation: When I say that I don’t love my mother, I am afraid that you will think that I am a wholly unnatural and unloving being. That I am a freak. That I am missing some part of my soul.

Out of my fear and my shame, I will rush to tell you that I am, indeed, quite whole – capable of deep love.

Out of my fear and my shame, I will tell you that I still love my father (despite his many abuses) and that I miss him terribly.

Out of my fear and my shame, I will assure you that I love my husband as though he is the other half of my soul.

Out of my fear and my shame, I will protest that I love my kid with everything I am, and would willingly die to protect that kid against any evil that life can bring.

Out of my fear and my shame, I will let you know that I feed people on the street, and that I lie awake at night crying about the pain of the world, and that I am kind to small children.

And all of it is true. Absolutely, utterly true. But telling you that doesn’t push out the shame. It makes the shame worse, because now I’m justifying myself.

I suppose I must have loved my mother once, before everything happened. In fact, I remember very clearly, at some point in my twenties, feeling a momentary rush of love for her, and it nearly knocked me backwards. For a split second, my heart opened toward her, and then it shut right damned down. Loving her was dangerous. Loving her was foolishness. Loving her was an act of self-destruction. Being vulnerable in any way to my mother was dangerous to my ability to feel worthy of life. My openness to her sent me into spirals of self-hatred that terrified me.

I could do a recitation of all the horrors. The beatings by my father that happened only at the provocation of my mother. The hours that she would torture me by telling me what he’d do to me when he got home. The manufactured wrongs. The drama. The ways I tried to bribe her from my piggy bank to please, please, please, mommy, don’t tell. The sexual abuse she countenanced and then denied. The times I shouted for her and she never came. The years that I learned not to shout for her because it was futile. The ongoing mantra in our household that she was always, always, always right, and that everyone else was always, always, always wrong.

I could talk about my 20s and early 30s — about my rage, my despair, my spirals into suicidal thinking after every phone call. I could talk about the night my mother harassed me by telephone for three solid hours – the night my husband took me driving in Tilden Park while I screamed and raged and kicked the dashboard and then went into full-scale denial that anything bad had ever happened and that everything, everything, everything, EVERYTHING was all my fault. The night that my husband looked at me and said, “Sorry, but you’re screaming and raging and kicking the dashboard, and that’s not normal for you, so I’d say something pretty fucking bad happened.” The night that I still love him for, over 10 years after our divorce.

But that recitation is only more self-justification. Look how bad it was! How could I love this woman? It’s not my fault! It doesn’t really get to the heart of the matter.

In this recitation, I’ve left out one thing, and it has little to do with what my mother did and everything to do with what she felt: The woman hated me. I don’t use that word lightly. It wasn’t just dislike, or normal mother-daughter conflict, or not seeing eye to eye. She hated me. She hated who I was. She gave me praise when I erased myself. Otherwise, she treated me with rage, with contempt, with condemnation, with criticism, and with disappointment.

I don’t know why she hated me. I imagine that there was something in her that she needed me to complete and I just didn’t have what it took. (Should I be ashamed of that? No. But I am.)

The hatred in her went very deep. After I told her that I was going to break contact with her for awhile while I did some healing, and that she was not to harass me again without fear of legal repercussions, she took the whole family with her. No one in my family would speak to me again. Not my brother, not my uncles, not my cousins. No one.

She took away my family. An extreme act of hatred. An extreme act of shaming. When I tried to tell my uncle what happened, he shared with me the family message: You had no right to do that to your mother.

Daughters don’t get to tell their mothers to stop. They don’t get to take space to heal. They don’t get to tell them that they will find someone to protect them. They don’t get to be anything other than loving and self-sacrificing.

The loss of my family is so hard to talk about. It feels so shameful. I lost my family. They didn’t want me. Something must be wrong with me.

I began to hate my birthdays. I began to hate myself for being born of my mother. I began to hate myself for trying to survive. And beneath the hatred, there was shame, shame, shame without end.

After 13 years of estrangement had passed, my mother died in June of 2004. I found out in late May of 2005. One day, at my husband’s urging, I went to the computer, scanned the Social Security Death Index, and found that she had died eleven months earlier. That was it.

Did I cry? No. All I felt was relief. For the first time in my life, I felt safe. She couldn’t hurt me anymore. She wasn’t going to pop up when I least expected and tell me that I was unworthy of her love, unworthy of anyone’s love, unworthy of life itself. It was over.

How could I feel that kind of relief? Daughters aren’t supposed to feel relief when their mothers die. They are supposed to wail and keen and miss their mothers and talk with their friends about how hard it is and how nothing will ever be the same.

But I couldn’t do that and I felt ashamed of that. What was wrong with me?

I carry a giant absence inside myself where my mother and her love ought to be. And inside that absence, the shame spills endlessly. How could there be that absence? Why didn’t my mother love me? Why did she take my family away from me? What was wrong with me?

I’m not sure what to do with this shame and this absence. I’m not sure at all. In my rational mind, I know that all of this shame is a crock of shit. I know that my mother’s lack of love was not my fault. I know that she unleashed her demons on me and didn’t care. I know that other people get to fuck up royally every goddamned day of the year, and they’re not punished with condemnation and abuse and the withdrawal of love. I know that I should be allowed to be one of those people, too.

But the shame remains.

Maybe I’m not the only one. Maybe someone is there who, in the silence of their heart says, Yes. This is what I feel too. Maybe this shame will peel off me one day, and I will just be a human being who doesn’t need to protest what a good person I am. Maybe one day, after I’ve written enough and cried enough and spent enough sleepless nights wondering what the hell happened, I will just be a human being who says, I know who I am, and I know that I’m flawed, and I still deserve to be loved and held, no matter what.

This burden of shame is too heavy. I don’t want to carry it anymore.

© 2013 by Rachel Cohen-Rottenberg

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We Disabled Folk Have Everything to Offer the World — Except Normalcy

I have been feeling a lot of sadness these days. It’s almost a sad kind of wonder. I look back over my life from my perch here in my 50s, and I think about how differently my life has turned out from what others had planned for me — and from what I had planned for myself.

Part of what has sparked this nostalgia has been reconnecting with an old friend from high school. I find myself traveling back to when we last saw each other. We were 18. It’s been over 35 years — a whole lifetime. And I wonder at how young we were, how unformed we were, how we were barely out of childhood, and how we have aged and weathered so many things in the interim.

But mainly, I think about the difference between who I am now and who I was then. In some ways, I am still that innocent kid, with the Mensa-level IQ, and the acceptance letters from Ivy League schools, and the faith that my intelligence and my good heart would open doors and make my life the privileged haven everyone told me it would be.

Because yes, I grew up very privileged. White and solidly middle-class, I had the best of everything: the best schools, the best arts programs, the best neighborhood, and the best and highest of expectations. Home was a nightmare, but it was a nightmare that I knew would one day be over. I was not trapped in it. I had choices. I had a plan. I had an escape.

But I didn’t have as many choices as I thought I did. I didn’t use the word “disabled” back then, but even in high school, I knew that people could do things that I couldn’t do — and I knew that I understood things they could not see. I didn’t know how to define it. I didn’t understand all the neurological glitches and processing difficulties and unfiltered perception that made my life so much more work than I was perceiving in other people. But even in high school, I knew that my life would not be what I had planned, nor what my parents were planning. I knew there were worlds I could not navigate and had no interest in navigating. I knew that I was going in a different direction. I cried all the time.

Realizing that I have multiple disabilities here in the middle of my life has really been about a loss of privilege. I’ve been angry about it, and I’ve grieved it, but mainly, I think about how incredibly privileged I am to be grieving the loss of privilege. What does it say that I have had to adjust to what most people deal with in utero? I have railed against the loss of privilege with all manner of words that come down to Why Me? I only started moving on with my life when I could answer with Oh, for God’s sake. Why Not Me?

I still have so much privilege. I live in a great apartment in a secure building. I don’t worry about food or clothing or medicine. I have my husband with me and my kid less than a mile away.

And yet… What is it about being disabled that always brings up the words and yet?

Part of it is a lack of access. I was abundantly fortunate to have had a very good career for fifteen years. And then I left it to raise my kid, and by the time I was done, my disabilities were in full bloom, the time for passing had long since passed, and I could not find an accessible environment in which to work. I miss that. I miss the daily collaboration of work. I miss the routine. I miss the projects and the work friendships and the busyness of it. I miss the old identity. I miss the social respect.

But it isn’t just about access. Not exactly. It’s more a sense that the world wants something I can’t give it, no matter how hard I’ve tried. It’s not enough that I’m smart and good-hearted and hard working. The world wants me to be normal. That is the baseline. That is the condition under which everything else takes place. And I simply can’t do it. I never could do it. I tried very hard. And for awhile, I was able to compensate. But I’m not interested in compensating anymore. I’m interested in living comfortably in my body. That just isn’t possible when you’re compensating all the time.

So that kid, who thinks that her brilliance and lovingkindness are going to be just the ticket, is still very much a part of me. She’s still looking around, wondering why it doesn’t quite work that way. But there is also the adult, who knows that the gig was up a long time ago, and that it doesn’t matter how many of the trappings of normalcy I’ve acquired. I’m not normal. I will never be normal. I don’t ever want to be normal. Why would I want to aspire to a statistical construct created by 19th century eugenicists? Does that sound like a fun way to live?

I have so much to offer the world. And yet, I can’t give it what it wants more than anything: normalcy. So I seek out people who don’t care about normalcy. I serve people who don’t care about normalcy. I serve people in the park who are hungry and homeless — many of whom are disabled, and all of whom are way further to the right of the bell curve on non-normalcy than I am. I think that is one of the many things I love about what I do three days a week: I distribute lunch to people who don’t expect me to be normal, who aren’t judging how far I fall from it, and who really couldn’t care less whether I fulfill the ridiculous expectations of some fictional idea.

So, oddly enough, and despite the undeniable privilege I still enjoy, I have found a source of connection among the most dispossessed people in my community. I work to make my privilege work for them. I do my best to take my privilege and wield it for the sake of people who are about as far from privilege as one can get. Right now, that’s the best I can do.

© 2013 by Rachel Cohen-Rottenberg

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