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On Insults in Dialogue
Mar 11th, 2014 by Rachel Cohen-Rottenberg

Here I am, late to the party, but this article on Skepchick got me thinking. Apparently, last month, there was a big blow-up about ableist language used in another post, and this Skepchick article addresses the issue. I don’t agree with much of the article, and I don’t hang out in the Skeptic community, but all that is really beside the point. What I find so interesting is the amount of words spent — both in the article and in the comments section — on the whole problem of whether it’s okay to use an ableist insult, whether anyone should care whether people are triggered, and whether we should all just get over being offended.

To me, words like “idiot” and “moron” and “stupid” are ableist, so I think that people were absolutely right to raise the issue. However, I think that there is something quite — I don’t know, odd? — about arguing over what kind of insults are allowed in dialogue. The whole problem could be solved by sticking to content, respecting the dignity of other people, and staying away from insults altogether, yes? Then you’d never end up with an ableist insult coming out of your mouth or off the keys of your computer.

The purpose of an insult is to hurt, to shame, and to demean. So is it any surprise that people who are uninvolved in the argument end up as collateral damage? Is it any wonder that sexism, racism, homophobia, transphobia, and ableism start creeping in when the insults start flying? After all, if an insult is meant to hurt, to shame, and to demean, then what better way to do it than to make implicit comparisons to people who are already hurt, shamed, and demeaned?

This is why I do my best to stay away from insults and why I’m not interested in anyone coming on my blog and launching them. It’s not just painful to the people involved; it has the potential to add to the marginalization of already marginalized people. And no, I don’t think we ought to be compiling lists of non-bigoted insults. I think we ought to be able to talk to one another with dignity about how to fix the problems in the world we live in.

But obviously, I’m a dreamer. Being harsh and cruel is so acceptable now that I often wonder why I even write these kinds of words. And then I remember that I write them so that others who feel as I do will know that they’re not alone. I write for people like myself, who would rather have an insult be a rare event and not a common and acceptable mode of communication.

I hope our culture can move back to valuing respectful dialogue. Of course, there is no reason to romanticize the past. It’s true that there have always been all kinds of disrespect and indignities visited upon millions of people, and respectful dialogue was not the experience of the many. I’ve experienced disrespect, indignity, and assault in my own life, and I come from a people that experienced it for many centuries. What I remember, though, from my earlier years as an activist, is that people who wanted to create a just world valued respecting people. They valued raising up people who were not respected into the light of dignity. They felt that the only way to create peace and justice was to model it. What I see now is exactly the opposite — that we’ve given into the idea that, because the world is a brutal and violent place, it’s somehow all right to be nasty with each other.

I don’t see our society valuing respectful dialogue any time soon — perhaps not even in my lifetime. I’m realizing that what I’ve worked so hard to do all of my adult life — to engage in civil dialogue while staying rooted in all of my emotions — is no longer of value to most people in the society I live in. This realization saddens me more than words can say.

© 2014 by Rachel Cohen-Rottenberg

What Do You Mean By “Civilized”?
Feb 28th, 2014 by Rachel Cohen-Rottenberg

I’ve been distributing lunches to homeless and hungry people for six months. After a night and a morning of driving rain, I brought food today to people living under the Water Street bridge on either side of the river. Two things struck me:

1) I have no idea how we can call our society “civilized” when we allow people to live under bridges, in parks, and on the street.

2) I continue to be amazed at how kindly, how respectfully, and how courteously I’m treated by people who have nothing. Only occasionally have I been met with disrespect, and it’s generally by people who are traumatized and mentally ill. Everyone else? They are so kind that they put people who have everything to shame.

The contrast was very apparent today. After distributing lunches and having some really wonderful contact with people, I headed home. I was standing at the corner, across from my apartment building, when a large truck came into the intersection and then stopped just before the crosswalk. I made eye contact with the driver and he let me know it was okay to cross. Once I was across the street, an older gentlemen saw fit to mansplain to me about traffic laws, saying, “That truck had the right of way. He was already in the intersection. You shouldn’t have crossed.”

I have no idea why people think it’s a public service to police the behavior of other pedestrians on a public street, but it’s happened to me before — again, after someone driving a vehicle stopped, made eye contact, and let me know it was fine to cross in front of them. I find this kind of behavior annoying. So I interrupted him and said, in my most cheery and assertive voice:

HEY! ENJOY YOUR DAY, WON’T YOU?

I can’t wait to get back to the park to distribute lunches on Monday.

© 2014 by Rachel Cohen-Rottenberg

If You Don’t Provide Accessibility, Your Message is “You Don’t Matter”
Feb 4th, 2014 by Rachel Cohen-Rottenberg

You never know when a lack of accessibility — and the message that you are not important enough for someone to provide it — is about to hit you in the face.

Case in point: On Sunday, I was having a lovely day, minding my own business, working out, studying ASL, writing my thesis, and otherwise enjoying the serenity of a rainy, overcast afternoon. In the evening, my husband told me about a conversation he’d had with one of his relatives that day. She had called him to apologize for not showing up to various important events in our lives. And from there, the day derailed into grief and utter frustration.

The conversation had begun well. She’d apologized. He’d thanked her for her apology. Everybody was happy. And then she said, “And tell Rachel I apologize, too.”

My husband, being a kind and thoughtful man, knows better than to accept a second-hand apology on anyone’s behalf. So he told his relative to apologize to me directly. She asked if he’d put me on the phone. I wasn’t there, and my husband mentioned to her that the phone doesn’t work for me. He really need not have mentioned it. She knows about my audiological issues. She knows how bad my hearing is when it comes to degraded sound on the telephone. She knows how exhausting it is for me to use the phone at all. She knows that I communicate in text when I am not standing face-to-face with someone. She knows all of this. I told her directly when she called me a few years back.

So my husband asked her to email me. Her response? “No, that’s not going to work for me.”

Why? Because she would have to walk up two flights of stairs to the computer.

I kid you not.

This is a person who has emailed me in the past. This is a person with all of her fingers, who is perfectly capable of climbing stairs, and who was simply refusing to use my best and most comfortable means of communication in order to make an apology I could take in without getting a headache. In other words, if she couldn’t use the telephone to make an apology for ignoring me and failing to show up, she was just going to … ignore me and fail to show up.

This situation has hit me like a ton of bricks. It’s not just the lack of communication. It’s the message that my feelings, my dignity, and my personhood are not sufficiently valuable for someone to write me an email. How much more marginalized in the family could I possibly be? How much clearer could the message be that I am not valued, that I am not important, that I do not matter?

This is not the first time I have felt marginalized in the family. For many years, I reached out to everyone and, with only a few exceptions, got little in response. I sent emails that went unanswered. I sent around pictures of my kid’s soccer games and dances and other life events and got no response. I shared events from my life to the sound of crickets. I offered to be of support in various family crises, to no avail. Only two of Bob’s family members showed up to our wedding; only one showed up to my kid’s high school graduation. Except for Bob’s kids, no one ever came to visit us in our house in Brattleboro, even though they were traveling in the area and we had told them that they were welcome to stop by.

And yet, for years, whenever someone has contacted me, I followed up. I did not leave emails unanswered. Why would I? Having lost my own family, I was so hungry for contact from my husband’s family that there was no way I would have risked any of them thinking that the contact wasn’t important to me. There is no way I would have missed an opportunity to connect.

And what have my husband and I done together? We have traveled down the east coast countless times over the past ten years to see relatives. I can’t even keep track of how many times I’ve gotten in the car and gone to New York — with my multiple disabilities, my super-sensitive neurology, my PTSD, and all of the pain and fatigue that derive from them. I’ve gone to a wedding crowded with people in a small space, where I could barely hear what anyone was saying. I’ve gone to parties and shiva minyans in noisy venues. I’ve helped lead a baby naming ceremony. I’ve helped to care for my father-in-law while his body and mind were falling apart. I’ve gone out to restaurants with family members and was utterly exhausted from the sheer noise. I’ve gone down to New York to visit family in the midst of a hideous, eight-month-long withdrawal from benzos. I’ve gone way, way, way past my comfort zone in the service of connecting with them.

But someone can’t walk upstairs to send me an email? Because it’s too hard?

My 69-year-old husband flew 3000 miles last month to go to an anniversary party for his relatives, after a whole year of flying back east every month to care for his dad.

But someone can’t walk upstairs to send me an email? At my husband’s request?

It’s so absurd that it doesn’t even compute. My brain is almost on fire trying to grok it. I have to stretch and stretch and stretch to meet the demands of the able-bodied world, and I’ve done it for 55 years, and I’ve done it without any support from my original family. In fact, I’ve done it in the face of a legacy of protracted abuse and all that it does to the body and mind.

But someone can’t walk upstairs to send me an email? Because it’s too uncomfortable?

Could the nature of able-bodied privilege be any clearer? Could the message of “You don’t matter” be any more apparent?

I am absolutely beside myself.

© 2014 by Rachel Cohen-Rottenberg

Why Is My Cane a Topic of Elevator Conversation?
Jan 24th, 2014 by Rachel Cohen-Rottenberg

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

The New Derrick Coleman Duracell Ad Gets It Right
Jan 17th, 2014 by Rachel Cohen-Rottenberg

Every time that a new ad featuring a person with a disability comes out, I get ready to cringe. So when I learned that Duracell had released a video ad featuring Derrick Coleman, a fullback for the Seattle Seahawks and the first deaf offensive player in the NFL, I had to get myself in a good mood before I watched it. And certainly, if you look at how others are talking about the video, you’d be apprehensive, too. Hollywood Life ran the video under the headline Derrick Coleman: Watch The Deaf NFL Star’s Inspiring Commercial, and HuffPo crowed Deaf Seahawks Fullback Derrick Coleman Will Inspire You With This Commercial. The comments under the HuffPo article are painfully predictable, with people getting all inspired and teary.

So before I watched the video, I was bracing for inspiration porn. But that isn’t what I found. In fact, I thought that the commercial did an excellent job of showing that among the worst of the barriers that disabled people face are the ways in which we’re ignored, dismissed, and discounted. And, appropriately enough, it’s captioned. Take a look and see what you think:

From the beginning, the ad talks about the ways in which Coleman has been mistreated in his life. The ad doesn’t imply that being deaf is an impediment to being an athlete; in fact, it keeps the focus squarely on the people who discouraged Coleman on the basis of his deafness. “They told me it couldn’t be done. That I was a lost cause. I was picked on. And picked last.”

In fact, rather than saying, “I couldn’t hear” as the reason for his being ignored, the voiceover shifts the responsibility to the people who didn’t know how to communicate with him: “Coaches didn’t know how to talk to me.” To my mind, this is an absolutely stunning line. Whether anyone who put the ad together knows it or not, it comes straight out of the social model of disability. I was so amazed to see that line there that I played the ad several times, just to hear it.

And then, there is the double entendre of using “listen” to mean both “hear” and “take to heart”: “They gave up on me. Told me I should just quit. They didn’t call my name. Told me it was over. But I’ve been deaf since I was three, so I didn’t listen.”

There is great wordplay going on here. Not only does the double entendre work well, but being deaf metaphorically becomes an asset rather than a deficit. It’s his deafness that keeps him from listening to the voices of discouragement and believing in himself. In other words, in the logic of the video, he’s not in the NFL despite his deafness, but because of it. That twist on the mainstream narrative just floors me. And now that Coleman has been able to ignore the dismissals and the discouragement, he can hear the applause, the support, and the people on his side: “And now I’m here, with the loudest fans in the NFL cheering me on. And I can hear them all.” A deaf man saying that he can hear the crowd is a great way to confront the idea that being deaf is always about not hearing at all, and it makes Coleman a person with agency, not a passive victim of fate. He decides when he listens and when he doesn’t. No one else makes that decision for him.

The video ends with a tagline that could easily be read as inspiration porn: “Trust the power within.” Obviously, not all disabled people who believe in themselves experience inclusion, find employment, or get people to cheer for them. But I’m not reading the commercial as an “overcoming disability” story as much as a “don’t let the bastards grind you down” story. It’s not his disability that Coleman has overcome. It’s the microaggressions, the low expectations, and the prejudices of others that he’s pushed out of his head. To me, it’s not what he’s accomplished that is the main thing, but the fact that he stopped listening to the voices of dismissal and pursued something he loves to do.

Whether or not deflecting societal prejudice leads to any sort of tangible reward, simply deflecting it is crucial – and very difficult. No one should despair because of the attitudes of other people, and yet, so many of us do at one time or another. I like the idea of trusting the power within – not because it will help us to overcome all of the massive structural injustices we face, but because it engenders self-respect and self-love.

© 2014 by Rachel Cohen-Rottenberg

When I Ask For an Assistive Listening Device, Feel Free to Treat Me As a Full-Fledged Person
Jan 13th, 2014 by Rachel Cohen-Rottenberg

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.
Jan 6th, 2014 by Rachel Cohen-Rottenberg

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

Petty Cruelties
Dec 22nd, 2013 by Rachel Cohen-Rottenberg

Today I was talking to a friend who lives on disability and has been homeless for several months. He told me a story that simultaneously made me angry and broke my heart.

The other day, while he was standing on the street, he saw something that delighted him, and he wanted to get a picture of it. He was getting ready to use his smartphone to take the photo when a couple of women started talking in very loud voices about how he should not have a smartphone.

“That man is begging and he has a $400 smartphone? How dare he! That’s just wrong. He shouldn’t have anything like that!” And on and on.

In point of fact, he got the phone for $70. But really, who cares what it cost? It doesn’t matter, because in the eyes of some people, poor folks should be completely destitute before they deserve anything. And even if they were completely destitute, you know that these very same self-righteous good citizens would still do nothing to help. If my friend were on the street with nothing but the clothes on his back, they’d spit at him and call him a lazy bum because being poor is, in their eyes, some sort of moral and social crime.

I am a very shy person when it comes to initiating social interactions. But if I’d been standing there while these women started in on this subject, you could not have shut me up. I’d have told them where to shove it and invited them to take their privileged asses down the road.

This is the mentality that keeps people on the street. You want homeless folks to get housing and jobs? How are they supposed to do that without a phone, without decent clothing, without food, without shelter, without all of the things that they need?

People and their petty cruelties just break my heart sometimes. My friend is a kind and decent person in a terrible situation who just wanted to take a photo of something that made him happy. And random people passing on the road — people who have never spoken to him, people who have never given him anything, people who have all the food and shelter they could ever need — couldn’t even let him have a happy moment. They had to open their mouths. They had to say something. They had to fuck it up. They couldn’t have a moment of consideration for someone else and just keep their damned mouths shut.

There is so much suffering out there, and the systemic problems are so huge. When people try to find some measure of happiness in the midst of it all, why try to take that from them?

I despair of humanity at times. These cruel, petty microaggressions just tear me up. And then I look at my friend, who has more decency and kindness than almost anyone I’ve ever met. People like him keep me going when I think that the world is beyond redemption.

I hope I help to keep him going, too.

© 2013 by Rachel Cohen-Rottenberg

Ableist Language in Social Justice Spaces: It’s Not Just About the Words
Oct 19th, 2013 by Rachel Cohen-Rottenberg

One of the most difficult things for me about hanging out in Internet social justice spaces is the sheer amount of ableist language that gets thrown around there. Some of us point out the language and ask people to refrain from using it, but it rarely works. There are days that, if I wanted to, I could make a full-time job out of calling out every iteration of “He’s insane” and “What a moron” that people trot out to describe putatively “normal” folk who hold egregious views or dictate bad social policy. The pushback is usually along the lines of “We have more important things to do than talk about words” and “You’re asking too much” and “We shouldn’t have to protect you from nasty speech on the Internet.”

I’ve been thinking a lot about these kinds of discussions, because they all follow a similar pattern, and they all tend to focus on language. I find that focus enormously frustrating because, for me, it is never just about language. It’s about the level of devaluation and disability hatred that lies beneath the language. Much of this devaluation and hatred are unintentional, but that doesn’t make their impact on people’s lives any less.

The devaluation is acceptable and normal. People who are of non-normative intelligence or ability (narrowly defined) are simply considered less-than, so it’s the height of insult to call someone “stupid” or “a moron” or “a person with a low IQ.” Likewise, people with severe disability are considered less-than, so it’s perfectly acceptable to respond to an argument you don’t agree with by saying “If you believe that, you shouldn’t go out without a carer.” (Yes, I have heard someone say that in a social justice space. I could almost see the sneer.) When I hear these kinds of words, it’s the hatred and devaluation I’m responding to, because it’s everywhere, and it has a concrete impact on people’s lives, including my life, the lives of people I love, and the lives of people I serve.

Much of the time when we talk about ableism in social justice spaces, it’s not in the context of violence, lack of services, the valuation of ability, the construct of normalcy, hate crime, institutionalization, homelessness, inaccessibility, isolation, and a number of other issues that intersect in all kinds of ways with race, queer, class, and trans* issues. The fact that disability isn’t incorporated into these spaces as its own social justice issue leads to discussions on language that can end up feeling very theoretical and rather precious. The issue really isn’t about language at all, but about the pervasive impact of the kinds of hatred that the language betrays. If there is no discussion about the impact of that hatred, though, then questions of language lose their grounding.

For me, language discussions are always about concrete things. We think in language, and it forms how we address the problems that face us. It’s the problems that concern me — and the ways in which language reinforces them, frames them, and limits our ability to look at them.

© 2013 by Rachel Cohen-Rottenberg

The Stories We Tell: Coming to Terms with PTSD
Oct 5th, 2013 by Rachel Cohen-Rottenberg

One of the ways in which I navigate the cacaphony of competing discourses about disability, mental health, and just about everything else is to remind myself that we humans are always storytelling and that these discourses are just a series of stories. Along with eating, sleeping, and breathing, storytelling is what we do. Certainly, some things — like the sheer physicality of our bodies — aren’t just stories, and yet, we interpret even these things with stories about them.

I’ve been thinking a lot about stories lately — about the stories I tell about myself, about the stories I tell about other people, about the stories people have told about me, about the stories the media tells about everyone. I don’t fault people for telling stories. It’s what we do in order to makes sense out of our existence. As Arthur Frank writes, we are beings who, in order to make life habitable, must tell stories from the narrative resources available to us:

“To say that humans live in a storied world means not only that we incessantly tell stories. Stories are presences that surround us, call for our attention, offer themselves for our adaptation, and have a symbiotic existence with us. Stories need humans in order to be told, and humans need stories in order to represent experiences that remain inchoate until they can be given narrative form… We humans are able to express ourselves only because so many stories already exist for us to adapt, and these stories shape whatever sense we have of ourselves… ” (Frank 2012, 36)

One of the things that comforts me in this life, especially when I feel barricaded in by the absurdities of the things that people say, is to remember that we can rewrite these stories. If we are all inveterate storytellers — incorporating pieces of different narratives and creating new narratives from what exists — then we can always reinterpret and rewrite our stories. We are always free to engage that process. The problem is that stories often masquerade as fact, and we feel cut off from rewriting them at all.

To say that a story isn’t fact doesn’t mean that it’s entirely fiction. The stories that people tell always have truths in them somewhere. But they are not necessarily truths about the purported subjects of the story. A story about me might contain no truths about me at all. It might contain truths about the storyteller’s fears. It might contain truths about the storyteller’s trauma. It might contain truths about the storyteller’s desire for power.

There are two sets of stories that plague me. One set consists of the negative stories that people have told about me or about people like me. These stories tend to be pathologizing. Sometimes, they are so ubiquitous that it is difficult to have the strength to analyze, reinterpret, rewrite, and rethink them. But I’m coming to see that it’s the stories that I tell myself about myself that are the most troubling. Some of these stories incorporate the larger narratives, sometimes by design and sometimes unintentionally. Others are a rebellion against the larger narratives. It would be impossible to avoid responding to these narratives in some way.

These days, there is one story of mine whose validity I’ve been calling into serious question. It has to do with Post-Traumatic Stress Disorder (PTSD).

I’ve been dealing with PTSD for nearly my whole life. It began over 50 years ago, when I was four years old. I wasn’t diagnosed until I was in my thirties, and that diagnosis was like the heavens opening up and the angels singing. I know that it sounds like a strange thing to say about a PTSD diagnosis, but how else can I describe the way in which the PTSD markers — the core narrative elements of the PTSD story — mirrored my own story so well? Suddenly, someone was narrating my story in a way that I recognized.

Over time, I learned to navigate and handle PTSD triggers. I learned to distinguish between a trigger and actual danger. I learned how to detach and breathe and not react when the catastrophic thinking started. I got very good at it.

And it worked for a long time — until a whole new level of protracted trauma came along, triggered the old trauma, and gave me a whole new set of things to heal from. It took me a long time to recognize the new trauma as trauma, even though it went on for 11 years. My husband and I moved to California this year, just to get away from it.

In order to cope all these years, I’ve told myself a story about how well my old adaptive patterns were working. And so, in true PTSD fashion, I went back to the story that had served my survival as a child — the story in which I was always the person who has it together, who figures it out, who doesn’t show weakness, who helps other people, who never asks for help, who is always on top of things, and who is somehow beyond regular, garden-variety human needs. In other words, I have spent the past decade or more dealing with PTSD by telling myself a story that am not traumatized. Not really. Maybe I used to be. But surely, not anymore.

Right.

These days, that story is showing itself to be largely fiction. It began a few days ago, when my husband left for a visit to the east coast. I felt tremendous sadness. I looked at the sadness and thought, “What is that doing there?” I started to ask the sadness what it was trying to show me. And within three days, I got the message: my body is absolutely racked by trauma. For the first time in my life, I am fully inside my body and it is incredibly painful. The level of stress, of sheer physical tension, of never feeling at ease, of never feeling safe is constant. I look at some of the things I do, and I see how hypervigilant I am.

For instance, there is the way I sit on the sofa and use the computer. Here is a picture of my sofa:

[The photo shows a picture of a futon with a blue spread in a mandala design. There are four white pillows along the back and some beige carpeting is visible in front. A small wooden end table is visible to the right.]

It’s a futon that doubles as a guest bed. It looks very beautiful and comfortable, doesn’t it? But do I sit on this futon comfortably, leaning against the pillows, relaxing? No, I don’t. I sit on the edge, next to the table, with one foot on the ground, looking like I’m ready to fight an intruder who is about to mercilessly fuck with me.

You can see why my story about not being traumatized isn’t exactly working.

One of the things I have noticed recently about my attempt to fend off PTSD is that I have bifurcated the telling of my stories into public and private. In my public writing, I will talk about disability quite openly. But privately, I rarely talk about it at all. For instance, I wrote to my regular doctor today about whether she could help with a letter of medical necessity for a service dog for PTSD, and her response was along the lines of “We’ve never talked about your PTSD. We really should.”

It’s true. We never have. I wrote her back and basically said, “We’ve never talked about most of my disabilities. We really should.”

I’ve been seeing this doctor since May. She knows about my auditory processing disorder. She knows about the problem with my hip. But she does not know about my Asperger’s diagnosis. She does not know about my recent diagnosis of mixed receptive-expressive speech disorder. She does not know about my dypraxia. She does not know about my severe vestibular issues. She does not know about my sensory processing disorder. She only learned about my PTSD today, and I’ve been dealing with that since I was four.

Why hadn’t I talked to her? Partly, it’s that I’m so wounded by many of the assumptions that people make about my disabilities that I almost can’t bear it anymore. I have had so many bad experiences. And of course, the PTSD gets in the mix there, because the PTSD says, “Right. Don’t talk about it. Don’t show any vulnerability. Act like you’re fine.”

I told her why I hadn’t raised the issue. And her response was, “I understand your hesitation.”

So it looks like we’ll be having that conversation after all. I will also be seeing someone for EMDR (Eye Movement Desensitization and Reprocessing) therapy. And I’m making tracks about getting a service dog. I can’t continue to talk about disability publicly and pretend privately like everything is fine.

I sometimes wonder whether passing as nondisabled isn’t sometimes an expression of PTSD. I mean, who wants to deal with all of the crap that gets thrown at us around disability if they can help it? Over the past couple of years, I’ve done everything I can to avoid as much of it as possible. But now I’m tired and my body hurts. It’s time to start telling the people I know in my daily life, not just in my writing.

Perhaps it’s safer to talk with all of you about it. If you’re reading this piece, it’s because you have some connection to the world of disability. But most people do not. And they’re the ones I have to start addressing, even when I feel like one more refusal, one more ignorant response, one more uncaring word is going to break my heart.

References

Frank, Arthur. W. “Practicing Dialogical Narrative Analysis.” In Varieties of Narrative Analysis, edited by James A. Holstein and Jaber F. Gubrium, 33-52. Thousand Oaks, CA: Sage Publications, 2012.

© 2013 by Rachel Cohen-Rottenberg

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