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
How to Be an Ally in Two Easy Steps
You can find a great deal of brilliant writing on the Internet about how to be — and how not to be — an ally. From Mia McKenzie’s 8 Ways Not To Be An “Ally”: A Non-Comprehensive List to Jessie-Lane Metz’s Ally-Phobia: The Worse of Best Intentions to Eli Clare’s Be an Ally to Disabled People to Frances E. Kendall’s How to Be an Ally if You Are a Person with Privilege, the writing on this topic is prolific, and anyone who wants to be an ally has likely stumbled upon it.
But what about all of the people who say, “I can’t think this hard. I’m tired. I just got home from my lousy job, my kid is screaming in my ear, and all I want from life is to fall asleep in front of the TV. And besides, I love everybody and I don’t harbor any bigotry. Good night.” These are the people I desperately want to reach. All the folks who have already made the commitment to be allies? I can refer them to people who have done the work of explaining the issue in painstaking and heartbreaking detail. But the people I want to reach need something a bit more concise to get them started.
So here it is:
How to Be an Ally In Two Easy Steps
1. Listen to and believe the experiences of other people. If someone tells you that they experience racism every day of their lives, believe them. If someone tells you that they are being victimized by disability hatred, believe them. If someone tells you that every bone in their body hurts because of the level of fear and anger they live with as a gay, lesbian, bisexual, or transgender person, believe them. Take this principle and apply it across the board: anyone who tells you what happens to them because of the way their bodies look, work, and experience the world, believe them. Believe, believe, believe. Because people aren’t making it up. They’re not spending their time talking about trauma and injustice because they have some sort of deep need to be depressed and angry all the time. They’d like the respect due to them as human beings. Step up. Listen and believe.
2. Respect the emotions of other people. Emotions are fine. Emotions, in fact, are wonderful. Emotions give us information about how to proceed in life. Someone who is the target of daily racism, disability hatred, transantagonism, and any other form of violence is going to be angry, in pain, and experiencing fear and despair. Think about it this way: If the world is kicking you on a daily basis, you have a choice. You can self-abnegate or you can get pissed off. Being pissed off is much healthier. Not only does it protect the psyche, but it’s a signal that something is wrong that needs to be made right.
So remember: The anger of another person is not an attack on you personally. Yes, some people can be wounding, destructive, and cruel when they’re angry, but that’s different from the anger itself. There is a difference between a verbal attack and an expression of anger. Someone saying “You are a fucking waste of space and I wish you would die” is a form of verbal violence different from “Your beliefs are dangerous to me and mine, and I’m pissed, and if you don’t fucking step up, the suffering will just go on endlessly.”
Please hold this distinction close to your heart. It’s vital.
A point of clarification for the uninitiated: Anyone who knows me knows that I don’t put up with attack. I don’t accept verbal violence. Words have living, breathing power to me. They can create or destroy. If someone mocks, berates, or disrespects me, I will push back. I have only one non-negotiable in life, and it’s called respecting my dignity as a person. But it works both ways. If respect is my one non-negotiable for how people treat me, it also has to be my one non-negotiable for how I treat other people. I have to be willing to understand the distinction between an attack on my personhood and words that happen to engender fear and pain in me. If someone else’s anger creates fear and pain in me, that’s not an attack. That’s a challenge to step up and respect the dignity of the other person by acknowledging their feelings and their experiences. There isn’t a person on the planet who doesn’t need that kind of respect. It’s absolutely basic to any form of sustainable change.
In the zone between “Let’s just be nice and pretend that everything is fine” and “Let’s say the most vile things we can think of because the world has already gone to hell” there is a space where the work is happening. We can combine love and respect and anger and pain in this work. So let’s do it.
© 2013 by Rachel Cohen-Rottenberg
Petty Cruelties
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
Hey, Slavoj Zizek: Deaf People Aren’t Metaphors and Interpreters Aren’t For You
Slavoj Zizek’s The ‘fake’ Mandela memorial interpreter said it all is such a train wreck of a piece that I hardly know where to begin. Somehow, Zizek manages to take an access issue basic to the Deaf community and spin it so completely that I’m left wondering whether he even knows that Deaf people exist.
To begin, Zizek interprets the Deaf community’s outrage at being denied access to the Mandela memorial in such a bizarre manner that it almost beggars belief:
“What lurked behind these concerns was the feeling that Thamsanqa Jantjie’s appearance was a kind of miracle – as if he had popped up from nowhere, or from another dimension of reality. This feeling seemed further confirmed by the repeated assurances from deaf organisations that his signs had no meaning, that they corresponded to no existing sign language, as if to quell the suspicion that, maybe, there was some hidden message delivered through his gestures – what if he was signalling to aliens in an unknown language?”
So, Deaf people protested the lack of access to “quell the suspicion” that some sinister form of communication was going on? And here I thought they were just outraged about a lack of access. I’m not sure how much further toward Othering members of the Deaf community Zizek could go, but …. oh, look! There’s this:
“And this brings us to the crux of the matter: are sign language translators for the deaf really meant for those who cannot hear the spoken word? Are they not much more intended for us – it makes us (who can hear) feel good to see the interpreter, giving us a satisfaction that we are doing the right thing, taking care of the underprivileged and hindered.”
Ah, so now Deaf people are “the underprivileged and hindered” (excuse me while I spit) whose interpreters are not for them, but for people who can hear. Seriously? At about this point, I’m wondering whether Zizek himself is signaling to aliens in a language I don’t understand, because most of us here on planet Earth are pretty sure that sign language interpreters are for people who can’t hear. Could someone quell my concerns, please?
And of course, for Zizek, because the interpreter was only there as window dressing to make hearing people feel deliciously liberal and inclusive, his very presence is nothing but a metaphor for the emptiness of the proceedings altogether:
“And was this also not the truth about the whole of the Mandela memorial ceremony? All the crocodile tears of the dignitaries were a self-congratulatory exercise, and Jangtjie translated them into what they effectively were: nonsense.”
The only nonsense, as far as I can tell, is Zizek’s insistence on speaking for the Deaf community, asserting that intepreters aren’t really for Deaf people, and then making a civil rights issue a metaphor for his political agenda. Perhaps if Mr. Zizek were to be quiet and ponder the issue for a few minutes, he might realize the obvious: that a man who was not a skilled interpreter, and who describes himself as mentally disabled, was unable to avail Deaf people of their civil right to share an event viewed by millions of people all over the world.
The lack of communication access is the issue, Mr. Zizek. The rest, indeed, is nonsense.
References
Zizek, Slavoj. “The ‘fake’ Mandela memorial interpreter said it all.” The Guardian. December 16, 2013. Accessed December 19, 2013. http://www.theguardian.com/commentisfree/2013/dec/16/fake-mandela-memorial-interpreter-schizophrenia-signing?commentpage=1.
© 2013 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
Why I Am Giving Up the Word “Privilege”
I’m going through a sea-change in my thinking about the concept of “privilege.” I find the word so thoroughly problematic that I don’t think I can be effective in my work and continue to use it.
My friend Kiera Scriven has written that the word “privilege” is a misnomer. When we talk about “privilege,” we’re really talking about rights:
A “privilege” in this case is something unearned, correct? “Unearned privileges” is how we tend to conceptualise it. But let’s think about some of these “privileges”: 1) Not being automatically perceived as criminal 2) Being given the benefit of the doubt in these and all kinds of situations 3) Fairer housing practices (see: Wells Fargo settlement in Baltimore) 4) Seeing positive and powerful representations of yourself everywhere 5) Being deemed as “normal” 6) etc…
Are these things we want people to have to /earn/?…I think these are aspects of basic humanity that should be bestowed upon everyone simply for existing.
So feel free to call it whatever you want, but I caution you when your concern is the fact that majority groups have these things — these things they haven’t “earned” — as opposed to the fact that minority groups don’t have them.
Starting with Kiera’s formulation, let’s get clear about what people mean when they talk about “privilege.” To ground the conversation, I’ll get as specific as I can: What does it mean when people say that I have white and middle-class privilege?
It means that I live inside a political, economic, social, and cultural system that gives me power on the basis of my skin color and class — both accidents of birth. I get a whole lot out of that power: money, education, housing, food, clothing, medical care, medical insurance, and cultural authority. The police don’t look at me in the street as though I’m a criminal. I’m not stopped for driving while white. I don’t run much of a risk of being shot for knocking on someone’s door for help. I live in an apartment in a secure building and do not have to worry about a rental application being discarded on the basis of my skin color or income. I have clothing for all kinds of weather and medicine when I need it. When I economize at the grocery store, it’s by choosing between one thing I want to eat and another — not by going without nutritious food.
Are any of these things privileges? No. It’s not a privilege to have an apartment. It’s not a privilege to have clothes. It’s not a privilege to knock on a door and not get shot. It’s not a privilege to be treated with dignity. None of these are privileges. They are basic human rights to which every person on the planet is entitled, and they are basic human rights denied to vast numbers of people on the basis of not only race and class, but also disability, gender identity, sexuality, size, ethnicity, and religion.
When we talk about “privilege,” we talk about “giving up privilege,” and that’s when people with the “privilege” start getting defensive. When people go to that defensive place, I feel the exhaustion coming on, because if I have to keep beating against people’s defenses, I’m not going to be able to sustain the work. Beating against defenses doesn’t serve. The defenses just go up higher. Does it really help to keep using the same strategy?
If what we call “privilege” is really a set of basic human rights and the power to protect them, then no one with any sense or self-respect is going to give them up. And they shouldn’t. The point isn’t to give them up. The point is to make sure that other people get them. What if we started talking about the rank injustice of some people having more rights than others? What if I said that my race and my class enable me to fulfill the promise of my human rights, and that I have to use my resources, my time, my energy, and my life force to fight in solidarity with people whose rights are unprotected? At that point, the question of my losing anything goes right off the table, because the aim isn’t for me to lose my rights, but to use them to make sure that other people get what they deserve to have.
There is something deeply disturbing about a social justice framework that sees human rights as privileges and that sees the solution to inequity as one set of people giving up their human rights so that another set of people gets them. That’s basically the system we’re already in. It’s a system of a scarcity. It’s the same system of scarcity that makes people compete with each other at Wal-Mart for TV sets at Christmas. It’s the thinking perpetuated by our media- and commerce-soaked culture, in which there is never, ever enough for everyone.
That’s no way for human beings to think about human rights.
Much of the problem with a lot of privilege conversations is that they ultimately become shaming, because it is all about what we have and who we are by an accident of birth, and not about what we do. There are lots of dents that can be made in my social power– my disabilities make very big dents in it — but I still have power that I cannot lose. When people start talking about the “privilege” inhering in people by virtue of birth or social position — rather than talking about what people are doing with their birth and social position — shame enters the picture, and that shame is often immobilizing.
In social justice spaces, I have seen a kind of obsession with “privilege” among white and other social justice activists — a kind of distracting guilt about it that creates a lot of distortions. In fact, much of what I see in discussions about ”privilege” is deeply informed by a Christian paradigm in which proper belief is the most important thing, sin must be expiated, and we’re saved by virtue of the words coming out of our mouths, the thoughts happening in our brains, and the feelings going on in our hearts. As Andrea Smith notes in “The Problem with Privilege,” there is a confessional quality to many conversations about privilege, with the listener expected to grant some form of absolution. As a non-Christian, I watch that paradigm in play and simply can’t participate, because it is almost entirely foreign to me. My culture is all about praxis. Belief can inform praxis, but it means nothing without it. I don’t come from a culture that believes in sin, or that believes that we’re fallen, or that believes that we need to feel shame for the world we’re born into, or that believes that confession and proper belief will save us.
It’s immobilizing and useless to feel shame for the system we’re born into. There is no shame in being born into a human body and a world we did not create, and we should feel no shame for that. But we should feel shame for sitting on our hands in such a system and doing nothing. We need to be listening to people tell us what we can actively do and we need to join up with them to do it.
The point is not to grok “privilege.” The point is to not to wrest human rights from each other as though that will create justice. The point is to do justice. I’d like to hear a whole lot more talk about how to do justice in a system overwhelming in its violence, its distortions, its lies, and its cruelty than I want to hear about “privilege.”
I just can’t go there anymore.
References
Facebook. “On ‘Privilege.’” https://www.facebook.com/notes/kiera-scriven/on-privilege/448172575236421. January 7, 2013. Accessed December 5, 2013.
Smith, Andrea. “The Problem with ‘Privilege.’” Andrea366. August 14, 2013. Accessed December 5, 2013. http://andrea366.wordpress.com/2013/08/14/the-problem-with-privilege-by-andrea-smith/.
© 2013 by Rachel Cohen-Rottenberg
Should Oppressed People Know Better?
For many years, I’ve labored under the illusion that oppressed people should be wiser, kinder, more just, and more empathetic than anyone else. As a Jew, I was taught early on that we have to fight for justice because we have known persecution. This teaching goes back thousands of years and finds its expression in the dictum in Torah that “You shall not wrong a stranger or oppress him, for you were strangers in the land of Egypt” (Exodus 22:21). I try to live by this dictum. It drives my work in a multitude of ways.
So the belief that Jews should “know better” than to engage in bigotry and ignore systemic injustice has been axiomatic for much of my life. Out of this belief, I’ve extended this ethical demand to all other oppressed groups: people of color should “know better” than to be homophobic; queer people should “know better” than to be ableist; disabled people should “know better” than to be racist.
Lately, though, I’ve begun to shift my perspective. This shift began during a discussion about the persecution of Africans in Israel. As happens so often, a discussion of Israeli government violence turned into an indictment of all Jews, with all kinds of anti-Semitic canards getting thrown around: Jews own the media, Jews haven’t learned from history, Jews think they’re better than everyone else, there is good reason that people are anti-Semitic because Jews fit the stereotypes, and on and on. The anti-Semitism was like several punches in the gut and brought up tremendous wells of pain and fear, but it was the repeated demand that we Jews “should know better” that I found impossible to answer.
I didn’t know what to say. In fact, I felt as though I really weren’t permitted to say anything at all — as though I had just been placed outside the conversation altogether. And I felt shame — despite the fact that I don’t live in Israel, have never visited Israel, have nothing to do with Israeli policy, and feel appalled by much of what goes on there.
I realized, for the first time, that it is extremely shaming to say to persecuted people “you should know better” – as though people in an oppressed group aren’t capable of all the same ignorance and bigotry and violence as non-oppressed people, and as though they have to be held to a higher standard. I’m becoming less and less enamored of the idea that it takes oppression to create empathy and a passion for justice. Given that dehumanization is at the core of all oppression, it makes no sense to me that oppression would automatically create greater empathy or a greater commitment to justice in anyone. After 2000 years of dehumanization, persecution, and near-genocide, are we Jews really supposed to be kinder and gentler than anyone else? After hundreds of years of systemic and violent racism, are people of color really supposed to be kinder and gentler than anyone else? After centuries of violence, segregation, and humiliation, are disabled people really supposed to be kinder and gentler than anyone else?
That’s not how human beings operate and yes, oppressed people are mere mortals, like everyone else. Pain is not a gentle teacher and nobility does not automatically emerge from suffering.
There is something about the “you should know better” standard that feels curiously oppressive. It’s as though non-oppressed people get a pass, because they haven’t learned what suffering is, but oppressed people are supposed to be nobler and better, because they have. This perspective ignores two basic truths about human life: a) all people suffer and b) it doesn’t take suffering to know that you shouldn’t spill blood or treat another human being unjustly.
What does it to take to do love and justice? It takes being in touch with one’s humanity. It’s a choice to do love and justice. Yes, we should use our suffering and put it in the service of humanity, but that is a choice open to all people equally. It is not simply the province of people who have suffered more than others. Telling dehumanized people that they should be more human than other human beings is simply unjust. It’s creating a standard that other people apparently don’t have to meet. And it ignores all of the pain and terror and anger and despair that drive the injustices we perpetrate on one another.
So to anyone to whom I have said, “But you should know better!” I deeply apologize. It is shaming. It is othering. It is giving power to a double standard that creates division. I am dismantling that standard in my own life and I will speak to it when I see it. More division is not what we need. Healing these divisions cannot happen when we continue to reinforce them. I will strive to do better.
© 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
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
