If You Don’t Provide Accessibility, Your Message is “You Don’t Matter”
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
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
Speaking Love and Anger: A Response to Ngọc Loan Trần’s “Calling IN: A Less Disposable Way of Holding Each Other Accountable”
There are many things I like about Ngọc Loan Trần’s article Calling IN: A Less Disposable Way of Holding Each Other Accountable. I’m particularly struck by the author’s insistence that, within social justice spaces, we be kind to one another — that we acknowledge that each of us is ignorant, that we understand that we are all debriefing from the constructs in which we were raised, and that we support each other as human beings as we go forward to create justice:
We fuck up. All of us. …. But when we shut each other out we make clubs of people who are right and clubs of people who are wrong as if we are not more complex than that, as if we are all-knowing, as if we are perfect. But in reality, we are just really scared. Scared that we will be next to make a mistake. So we resort to pushing people out to distract ourselves from the inevitability that we will cause someone hurt.
And it is seriously draining. It is seriously heartbreaking. How we are treating each other is preventing us from actually creating what we need for ourselves. We are destroying each other. We need to do better for each other.
We have to let go of treating each other like not knowing, making mistakes, and saying the wrong thing make it impossible for us to ever do the right things.
And we have to remind ourselves that we once didn’t know. There are infinitely many more things we have yet to know and may never know.
…
I want us to use love, compassion, and patience as tools for critical dialogue, fearless visioning, and transformation. I want us to use shared values and visions as proactive measures for securing our future freedom. I want us to be present and alive to see each other change in all of the intimate ways that we experience and enact violence.
This is all absolutely beautiful, and I am so happy to see someone talking about it. I am unbelievably tired of the verbal violence that passes for dialogue, particularly in social justice spaces, and anyone who pleads for coming from a place of love and empathy mixed with anger and pain is a person after my own heart.
But there are a couple of things about the article that call me up short. One of them is the way in which the author talks about people having “strayed.” There is something about that idea that feels both deeply foreign and painfully authoritarian to me. The concept appears in the following context:
I picture “calling in” as a practice of pulling folks back in who have strayed from us. It means extending to ourselves the reality that we will and do fuck up, we stray and there will always be a chance for us to return. Calling in as a practice of loving each other enough to allow each other to make mistakes; a practice of loving ourselves enough to know that what we’re trying to do here is a radical unlearning of everything we have been configured to believe is normal.
There is a Christian paradigm here of “straying from the fold” that I find very troubling. I don’t come from a Christian background of bringing people back into the fold; I come from a Jewish background in which we already belong and are free to disagree. So, in the context of the piece, what exactly is the ideology from which people “stray”? Who decides? Is it necessary to think about a central ideology around which we must all constellate, or should there be more room for critique, for disagreement, for generative argument? Straying assumes that we must come back to center. But whose center? Mine? Yours? Any group that treats me as though I’ve “strayed” is likely a group that I will “stray” right out of, never to return.
My other issue with the piece is that it is directed only to people inside social justice communities. There is not necessarily a problem with this approach, per se. After all, making sure our own communities are functional is a prerequisite for trying to create a more just and loving society. But I’m also aware of the necessity of applying “love, compassion, and patience as tools for critical dialogue, fearless visioning, and transformation” with people who are outside of social justice communities — with people who haven’t heard our critiques of the status quo, who haven’t examined their own complicity in oppressive systems, who haven’t done the reading or had the discussions or entered into the discourses that are so familiar to us. To me, this is the real challenge. How do we call people in who are way outside of our communities without exhausting ourselves, getting run over, or compromising what we believe in?
I believe it’s possible. I believe that we can combine love, compassion, patience, anger, outrage, pain, and despair as we talk with others who are outside of our circles. If we don’t combine all of these feelings — if we’re only in a place of anger and outrage, or we’re only in a place of love and compassion — we’re living at the polarized extremes that our society has taught us are normal, expected, and beyond critique. We’re creating either endless war or a false peace.
We can do better. We must do better.
Reference
Trần, Ngọc Loan. “Calling IN: A Less Disposable Way of Holding Each Other Accountable.” Black Girl Dangerous. December 18, 2013. Accessed January 1, 2014. http://www.blackgirldangerous.org/2013/12/calling-less-disposable-way-holding-accountable/.
© 2014 by Rachel Cohen-Rottenberg
Accessibility: My Kid Makes It Happen!
[Note: This is a post about my kid West, who is genderqueer and uses the pronouns they/them. So when I use those pronouns, I'm referring to West.]
My kid West is AWESOME.
They’re taking a creative writing class at a local community college. Last night, everyone in the class did a reading of their work, and we were invited to attend.
I need written backup for oral presentations; otherwise, my auditory delays and general difficulty with auditory processing makes it hard to discern everything being said. My husband Bob also has auditory difficulties and hearing loss. West knows that and took the initiative with the professor to talk about accessibility — not just for us, but for everyone. They sent me the following message a day before the presentation:
I talked to [the professor] about accessibility for the final and she and I are going to work on making it more accessible next semester. And for this final, she sent out an email asking if anyone’s loved ones are going to need accommodation and she asked for everyone to print out two copies of their work for you and Bob!
So we get to the presentation, and we’re immediately presented with written copies of almost every single reading. It made being there so wonderful. I thoroughly enjoyed myself. And all of the credit goes to West, for being such a kick-ass a disability rights advocate and making sure that the professor was aware of access needs.
Thank you, West! You ROCK.
© 2013 by Rachel Cohen-Rottenberg
Stymied by What I See
Ours is not the task of fixing the entire world all at once, but of stretching out to mend the part of the world that is within our reach. Any small, calm thing that one soul can do to help another soul, to assist some portion of this poor suffering world, will help immensely. It is not given to us to know which acts or by whom, will cause the critical mass to tip toward an enduring good. — Clarissa Pinkola Estes, We Were Made for These Times
I have been distributing food to homeless and hungry people in Santa Cruz for a little over three months. I love what I do. I love the people. I look forward to seeing them and serving them.
[This photograph shows a kitchen cabinet containing ingredients for lunches -- loaves of bread, jars of peanut butter and jelly, and boxes of cookies -- along with boxes of sandwich bags and paper bags.]
Now that the weather is getting colder, I am really concerned about the danger of people dying of exposure. Four people just north of here, in Santa Clara County, have died of exposure in the past few weeks. While Santa Cruz usually has a temperate climate, it’s been below freezing at night. A few weeks back, I had my husband send me all of the hats, scarves, and mittens I made when we lived in Vermont, and I gave them away to people on the street. I also made a hat and scarf for a friend who has been homeless for several months. I can’t stand the idea of people being cold overnight.
I have a winter coat that I brought with me from Vermont. I’m going to give away. I had been saving it, thinking that if I visit the snow sometime, I’m going to need it. But why keep it stored in my closet for another day when people are cold right now? If I need a winter jacket, I can always get one. I do not need to worry about things like that. So I’m keeping my eye out for other jackets that I can pick up in thrift stores and give to people who need them.
So there is much to do — and much that troubles me. One of the most troubling things is the way in which people respond to what I do. First, there are the people walking through the park who have homes. They sometimes see me distributing food and take a moment to say something like, “Oh, wow. You’re handing out food? That is so nice of you.” While I always appreciate a compliment, I find myself getting impatient with that particular one. I don’t need people to tell me what a great thing I’m doing, for the simple reason that I don’t think I’m doing a great thing. I think I’m doing the right thing, as any human being should do, and I would like more people to get involved.
And then there are the responses from people on the street. It’s the gratitude that calls me up short. The gratitude — for a sandwich, a piece of fruit, some cookies, and a kind word — resonates with all that is wrong about the situation. People say things like “You’re an angel” and “You’re just so wonderful,” and “God bless you for doing this.”
These responses are genuine, and I take them in with appreciation. I say things like, “It’s my pleasure” and “God bless you, too.” But it breaks me apart inside to realize that people are seeing God in a peanut butter sandwich — and that people are so disrespected, spat upon, fearful, and loathed that any kindness is like manna falling from heaven.
It just about guts me, because I’m not doing charity here. I’m doing justice. It’s wrong that people are hungry. It’s wrong that people are sleeping outside in freezing weather. It’s wrong that people have no refuge. It’s wrong that people are so disrespected that they feel that they don’t matter. It’s all so wrong. So, so, so wrong.
As much as I love what I do, I am also feeling stymied by the lack of any discussion about how to get people out of homelessness. At least in my city, any and all official discussions of homelessness center around crime. It illegal to sleep outside between 11 pm and 8:30 am, and people are routinely woken up, given tickets, and told to move along — to where, exactly? And with what money are they going to pay those tickets? And then if they try to sleep outside during the day, they’re not supposed to have a blanket on top of them. They can’t be on a bench for more than an hour. It goes on and on.
Now, according to one of my friends, they’re talking about throwing people in jail after three tickets — as though jail were some sort of “deterrent” for the “crime” of being poor. There is no talk of creating affordable housing for low-income people. There is no talk of creating accessible housing for the staggering number of disabled people on the street. There is no talk of creating accessible work places so that disabled people can support themselves. And there is no talk of how to create independent living support for people who need assistance staying housed.
There is no conversation about long-term solutions. There is no conversation that even begins to approach the roots of the problem. There is no conversation that speaks to the injustice of forcing people to live outdoors in below-freezing weather.
This is an old story, of course. It’s always been a crime to be poor and have no choices.
I would like to be involved in work to deal with the systemic problems that underlie homelessness, but I don’t even know where to begin. At this point, I feel that all I can do is to engage in palliative measures. There is nothing wrong with palliative measures, of course. God knows, when people are suffering, they can’t just wait until the injustices are fixed. That could take generations. They need whatever support and comfort I can give, and I have the resources to make that available. I have the resources to buy food for lunches. I have the time to make them. I have the power to do a great deal. I am not discounting the importance of any of that.
But given that virtually all of the long-term homeless population is disabled, I wonder why disability rights organizations are not getting involved here on the systemic issues. This is ground-level work. And yet, even if there were discussions going on about how to address the underlying issues, and even if there were political action taking place, I know that most of it would be inaccessible to a person with my disabilities.
I sometimes find myself falling into “overcoming” mode — the feeling that if I just pushed myself a little further, I could show up in noisy spaces that overload me, or do without captioning, or talk to people whose speech is so fast that blows right past my auditory delays, or end up exhausted for days — for the sake of discussion and political action. I keep hearing that internalized ableist voice saying, “You’re not doing enough. You need to be doing activism the way that other people do it.” I keep thinking that if those discussions were happening, and if those political actions were happening, I’d just have to suck it up and pay no attention whatsoever to how my body actually works.
I need to be careful of that voice. At the moment, I am creating my own accessibility and my own activism, and until the world opens up in terms of access, that will be how it will remain. I want to work on systemic issues, but to do that, I would likely have to spend an inordinate amount of time fighting for access. I’d rather not. I’d rather channel all of that energy into the work itself.
So I’ll continue to do my best by people, and to keep my eyes open for all kinds of opportunities to further be of service. That’s the best I can do in the world as it’s presently constructed. And for the people I serve, even a small act of kindness is writ large in their lives. So I go forward with the faith that no moment of channeling the larger love is wasted, and that all will come to fruition if we continue to do right.
© 2013 by Rachel Cohen-Rottenberg
How Do You Define Activism?
[I originally posted this piece to my old Journeys with Autism blog in April of 2012. The subject of activism and disability came up in a conversation today with several other disabled people, so I'm reposting the piece here as a point of discussion.]
How do you define activism?
I’ve been chewing on this question for awhile. It’s come up for me lately in the context of my graduate course. We are being asked to talk about the social relevance of our work, with an eye to bringing together theory and practice.
I find myself balking at the dualism of theory and practice. Surely, at least in the case of disability rights, disability theory is essential to thinking about how to solve problems, change cultural assumptions that lead to discrimination, and enable people to heal internalized ableism. I’m not sure that, when it comes to oppression, there really is a useful distinction to be made between thought and practice; after all, analyzing and critiquing oppressive norms like racism and ableism is part and parcel of creating change. For myself, reading disability theory has enabled me to move through discriminatory situations with a great deal more consciousness about what is actually going on (i.e. that it isn’t about me and “my problem”), and to therefore advocate for myself more effectively. When I can do so, not only do I help myself, but I also serve notice to people that the next disabled person who comes in the door may very well be prepared to do the same.
Perhaps the real issue isn’t the difference between theory and practice, but audience. For example, if academics are writing theory and it never goes beyond other academics and the pages of academic journals, then it cannot have an impact on ordinary people who need new frameworks in which to operate. This is a significant problem in academia. Except for my current graduate program, which is interdisciplinary and therefore oriented toward problem-solving, my experience in the field of humanities has been to be fired up with passion and outrage about the injustices of the world, only to hit the hard brick wall of the institution, which provides few opportunities for any sort of real-world practice. In fact, it was the presence of that wall that drove me out of academia for 25 years.
But my question about what constitutes activism goes far beyond questions of theory and practice into the mode of activism itself. For me, writing is my primary mode of activism, because it’s the way in which I communicate most effectively. It’s not the activism of talking to my legislators or organizing protests. It’s a quieter activism.
It’s the activism of replying to emails from parents, who ask about sensory issues, or about how to interpret their kids’ behavior, or about why certain language hurts.
It’s the activism of running the Autism and Empathy site, smashing stereotypes, and giving a place to voices that are all-too-often silenced in the popular media, in autism organizations, and in the scientific community.
It’s the activism of reflecting on my life, on my reading, and on my experience in a way that speaks to people who are just finding out that others feel as they do.
It’s the activism of building bridges with parents by letting people know that just as I need respect for my feelings and my process, so I will give them respect for theirs.
It’s the activism of creating a safe space on my blog, in which people who have never known safe spaces can express themselves without fear of being attacked for their perspectives.
It’s the activism of lifting up my voice and speaking out against murder, and abuse, and cultural violence against disabled people.
There are so many of us who cannot talk with our legislators, or organize protests, or do so many of the things that we tend of think of as activism. I am beginning to realize that defining activism is those ways is much too narrow. Of course, all those things are important. But they are not the only way to make change, and defining activism in those ways is to give in to ableist notions of what sort of action is worthwhile and what sort is not.
The fact is that it’s all activism. Every single piece of it.
Every disabled person who has the courage to ask for the accommodations they need at school or in the workplace is an activist.
Every disabled person who comes out of the closet and says, “This is who I am,” is an activist.
Every disabled person who works to defends his or her psyche against a steady onslaught of devaluation and dehumanizing messages is an activist.
Every disabled person who shares the words of another disabled person, and thereby helps to create a network of mutual support and pride, is an activist.
How could it be otherwise, when simply being disabled and loving our lives is a radical act?
© 2013 by Rachel Cohen-Rottenberg
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
Just a Drop in the Bucket
[The photograph shows ten open paper bags, standing upright, with five in the front and five in the back, against a white wall with grey shadow.]
Today, when I was passing out lunches in the park, one of the people there said to me, “It’s because of people like you that we’ll never starve.”
I was so taken aback. Sometimes, I only see how huge and systemic the problems are. I see lack of accessible housing, lack of accessible work places, lack of welcoming social structures, and lack of decent medical care as the root causes of so much homelessness amongst disabled people. And I see all of the systemic bigotries and inequalities and greed and broken social programs that are behind hunger and homelessness for so many people who are nondisabled.
And when I see all of that, I think that what I’m doing is just a drop in the bucket. I’m giving out 30 lunches a day, three days a week, when there are 1500 people living on the street in Santa Cruz alone, and many, many more going without food. If you think about what is happening across the country, and in how many ways this scenario is repeated in nearly every city, you see just how huge the problems are. In many ways, what I do really is just a drop in the bucket.
And then I remember that every person is a universe all their own, and that even saving one person from hunger or despair for one day is everything to that person. Everything. As the Talmud says:
“For this reason man was created alone, to teach you that whoever destroys a single soul, he is guilty as though he had destroyed a complete world; and whoever preserves a single soul, it is as though he had preserved a whole world.” (Sandhedrin 37a).
So I keep handing out food to people who see God in a brown paper bag and think I’m an angel, when the bag just contains a peanut butter sandwich, some cookies, and some fruit, and I am a very flawed and struggling person. But I try to channel the love that comes from The One Above, because I know that it is a balm to the soul. For people who have no refuge, the respect and kindness of others are reminders that they deserve justice in this world – including the ability to eat, to sleep, and to occupy space without fear.
Food feeds the belly. And kindness feeds the soul. And love provides a refuge, however fleeting.
And so I continue.
© 2013 by Rachel Cohen-Rottenberg
The Stories We Tell: Coming to Terms with PTSD
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
To the International Paralympic Committee: Let Victoria Arlen Compete
According to a recent article in The New York Times, disabled swimmer Victoria Arlen has been barred from competing in the Paralympics on the grounds that her disability is not permanent.
In her early teens, Victoria spent three years coming in and out of consciousness. Her legs are now paralyzed. She experiences muscle spasms in her upper body. She lives with severe stomach pain. She has seizures. Victoria was diagnosed with transverse myelitis and then given an additional diagnosis of acute disseminated encephalomyelitis (ADEM).
Now a high-level athlete, Victoria won four medals and set a world record at the Paralympics last summer. This year, however, she will not be competing in the world championships. The International Paralympic Committee’s Peter Van de Vliet sums up the committee’s decision:
“The million-dollar question is, Is this a permanent impairment?” he said. “The rules stipulate that only people with permanent impairments can compete, and the one thing the doctor couldn’t explain was whether this was a permanent impairment.”
All of the many things wrong with this picture fall into three main categories:
1. The committee is narrowly defining disability as a medical condition, with no understanding that it is also a social position. The medical-model view of disability is very outdated, and it goes against the core reason for the existence of the Paralymics. If the point is to allow high-level athletes to compete because they are excluded from competing with able-bodied people, then the social model has to enter the picture. Can Victoria Arlen be competitive against able-bodied swimmers? Can she qualify for the Olympics according to able-bodied standards? No, she can’t. Who is the Paralympics for if not for a high-level disabled athlete like her?
2. The committee is adhering to a strict binary of disabled and non-disabled, when no such binary exists. Everyone has a body in a state of flux. At present, Victoria’s body is disabled. What is happening at present should be the only deciding factor — not what might happen in some mythic future. After all, who is to say that a cure for the condition of some other Paralympic athlete isn’t around the corner, and that Victoria Arlen’s condition will not become worse?
3. The committee is essentially asking Victoria Arlen whether she is “disabled enough,” when no such objective criteria exists. In many ways, the committee’s decision mirrors the controversy about whether Oscar Pistorius was too able-bodied to compete in the Olympics. To my mind, this is a very odd question to ask about any disabled person, but especially about someone with a very clear physical impairment. Oscar Pistorius is an amputee. Victoria Arlen’s legs are paralyzed. I fail to see how the possibility that Victoria’s body might one day be ambulatory generates sufficient ambiguity to override the fact that she currently cannot purposefully move her legs.
The only deciding factor should be whether Victoria Arlen is disabled now, which she clearly is. It’s absurd for disabled people to draw these kinds of lines and act to exclude one another based on outmoded and questionable criteria. When it comes to disability, it’s time for the Paralympics to get into the 21st century
© 2013 by Rachel Cohen-Rottenberg
