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

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

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

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

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

© 2014 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

© 2014 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2014 by Rachel Cohen-Rottenberg

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

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

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

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

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