Disability in the Movement: Including the Invisible

We’re thrilled to post this excellent article at OAH. This piece first appeared in Slingshot #109, Spring 2012. It is reprinted here with permission of the author, Comrade Canary.

by Comrade Canary

The politics of inclusion have always been at the core of the disability rights movement, and activists with disabilities are speaking up at General Assemblies about how to make occupations more accessible. People with disabilities are used to obstacles, and activism comes natural to many of us, because we frequently find ourselves thrust upon a soapbox simply to demand our right to access public places. But disability rights are not merely about ramps and zero threshold, the willingness to provide sign language interpreters and resources in alternative formats, or making seats available to those who need them. Building an inclusive movement means becoming aware of all of our comrades’ needs, be they obvious or invisible, and feeling the empathy necessary for true solidarity. Reclaiming the commons for all is not about tolerating each other, but accepting and embracing our differences. It’s not about accommodation, but about community. “An Injury to One, is An Injury to All” is not an empty slogan, but describes real people, with real injuries.

People with disabilities have been called the largest minority in the world, one that each and every person can become part of at any given moment, and without warning. If you’re lucky enough to live to a ripe old age, you most likely will end up with some measure of disability. Direct action activists who stand up to the police state are especially at risk of disabling injury, but are often unprepared for the difficult realities people with disabilities face. Disability rights are currently under heavy attack by the austerity measures of the 1%. Already living in poverty, we have seen deep cuts to the social services that keep many of us alive. SSI has been reduced several times over the last couple of years. Medicaid has been stripped so bare, that street medics at many occupations have more to offer someone in need of medical care. In-home supportive services are being decimated, and as a result many people with disabilities are in danger of losing their independence and of being institutionalized.

The more complex our own individual struggle for immediate survival, the less likely we are able to help in the struggle for revolutionary change, unless the movement makes room for our needs. Many people with disabilities cannot participate fully in the Occupy movement, but desperately want to. Among the invisible 99% are comrades who are isolated by disabling illnesses, that are caused by the industrial civilization of the 1%. As synthetic chemicals and other toxic substances have become a constant in our lives, some of us have reached toxic loads that are no longer manageable. For us there are no ‘small’ exposures. Every exposure is another drop in a barrel that’s already overflowing. Because the toxic substances that make us sick are so commonly used, many of us can rarely leave whatever controlled home environments we can create, and we become housebound, because every outing is a physical assault on our health. We are essentially barred from participation in the community, and are in effect invisible. When we do venture out, some of us have to wear masks to help minimize exposure, and stay at a distance to avoid perfumed smokers, keeping us further alienated from our comrades.

There are a few things that occupiers can do to help make it safer for comrades with toxic injuries to participate: As individuals you can choose to use fragrance-free laundry and personal products. Synthetic fragrances are made with petrochemicals, and a slew of other hazardous chemicals. Even essential oils are often extracted with toxic chemicals, and can make people ill. Occupations could explicitly discourage smoking in the crowds, and set up comfortable smoking areas. A very large segment of the population has asthma and other lung diseases, which are aggravated by second hand smoke, including from incense and burning sage. Any ceremonial burning could be planned for specific times that can be avoided by those of us who must. For comrades injured by electromagnetic radiation, which often overlaps with chemical injuries, it would be helpful to set up an area as far from any cell towers as possible, where cell phones and other wireless gadgets must be turned off.

Why should occupations do any of this? Out of solidarity, as well as self-preservation. Because there are millions of people who are injured and sensitized by chemicals and electromagnetic radiation, many who are pushed to the margins of society by the toxic industries of the 1%. There are millions of people with chemically-induced asthma and other respiratory diseases, of which thousands die each year. Every cell phone transmission puts an increasing number of people who live near cell towers at risk of cancer. In a society where the use of chemicals and wireless technology runs rampant, such injuries can happen to anyone. It can happen to you or someone you love. Like the canaries in the coal mines who alerted miners to deadly fumes, those of us who have been poisoned already, are often able to recognize toxicity sooner than those who are still healthy. Some among us were first injured by teargas on previous actions, and have vital information and skills to contribute to the movement, but we can’t approach you when your cologne is impairing our central nervous system and making it hard to breathe.

Of course people with toxic injuries are unlikely to forget that the cozy villages that are being built by the Occupy movement are also direct actions with inherent risks not everyone will be able to take. Chemically injured people cannot afford to stick around when the cops put on their gas masks. The threat of chemical weapons precludes our involvement in certain actions. But that is not to say that we should be excluded from history because of our limitations. The disability rights movement has been involved in civil disobedience from the start, challenging the misconceptions of helplessness, and continuing today with groups like ADAPT. People with disabilities are participating in occupations throughout the world. Even as comrades with toxic injuries are housebound, they find creative ways to support the occupations from where they are, like the folks who Occupy At Home and organize online. But we shouldn’t have to stay at home, isolated from our communities at large. A movement that unites the 99% should make explicit efforts to make occupations accessible for all in whatever way we can take part. This is our revolutionary moment too, and we’re entitled to participate and fight our own battles against the abuses of the 1%.

* * *

Comrade Canary is a chemically injured revolutionary in the San Francisco Bay Area, who organizes resistance against toxic industry, in the labor, environmental, and disability rights movements.

Posted in Ableism, Accessibility, Disability rights, Hidden disability, MCS/multiple chemical sensitivity, Occupy Movement, Right to Public Assembly, Wireless/EMF | 1 Comment

A Plagiarised Writer’s Response to #PIPA & #SOPA During the #Blackout

Cross-posted at Bed, Body & Beyond and AfterGadget

If you go to Wikipedia today, you will find it blacked out — along with many other websites, blogs, twitter accounts, and more. However, on the Wiki page, along with the blackout is a way to contact your representative to tell them why you oppose PIPA/SOPA (or to learn more information about these bills, if you’re not familiar with them).

I encourage you to make your voice heard. Here is what I wrote to my representative. Feel free to use whatever is relevant or useful to you:

As a writer who has had my work stolen — shadow companies were selling my articles under their own copyright on Amazon, as well as websites that have stolen my blog content and reprinted it without permission on advertisement-filled pages — I am very sympathetic to the aims and goals of SOPA and PIPA. In fact, multiple articles were stolen and sold on Amazon from a feminist newspaper I was in by this one company, and the editors and publishers of the magazine had tremendous difficulty getting Amazon to stop selling this stolen work.

I wonder how many of my other stories have or will be stolen — particularly because one of the genres I write in is erotica, and that seems to be an especially popular genre to steal and publish under another name. I work very hard on my stories. It’s no small feat, because I am severely disabled, and each time I write, it exhausts and sickens me. But I continue because it’s my passion and my joy and my job in this life.

I use the internet for everything — work, social interaction, news, research for work, research on my medical conditions and connections to others with my illnesses, personal study, and more — everything, really. I am bedbound due to chronic illness so it’s my connection to the world outside my bedroom. The idea of what PIPA and SOPA could mean for internet freedom and literacy is chilling to me. I am absolutely opposed to SOPA and PIPA, even with my personal experiences of internet piracy.

Megacompanies like Amazon need to be held accountable. They did their best to evade me, making their legal department all-but-unreachable, and then when I threatened them with legal action, they simply took down the pirated article without acknowledging my correspondence or compensating me for my stolen work. The big money-making machines, like Amazon, need to know that the DOJ has them in their sights, that authors need to be respected and protected.

But indiscriminate, sweeping legislation like SOPA or PIPA is not the answer. It throws the baby out with the bath water. It will not stop the internet megacorporations from their sloppy, unethical (and lucrative) practice of ignoring stolen work, but it will seriously damage the free exchange of ideas and information that is the life’s blood of the internet. The people of the internet are united in our opposition to SOPA and PIPA. I ask you to listen to your constituents, not corporate interests.

Thank you for your time, for reading, for listening, for following the will of the people.

P.S. If you have tried to email your representative or senator and gotten an error message where their website is supposed to be, that’s because so many people have registered their opposition to SOPA/PIPA that we’ve crashed their sites! Keep it up! You can still contact them on their Facebook pages or via Twitter.

Posted in Strike!, Support the Movement | Tagged , , , , , , | 1 Comment

In Honor of MLK Day: Regular People Make History

This is not a particularly new thought, and in a lot of ways, it’s not particularly deep, but it struck me in a new way recently, so I thought I’d share it with you today, in honor of the birthday of Dr. Martin Luther King, Jr.

Martin Luther King helped change the world, and he was just a person. He was an inspiring person. He was an intelligent, passionate person who knew how to use his skills. He was an educated person, a reverend. But he was also just a person. Like you. Like me. A person who made choices in the face of fear. A young person, even.

Let me tell you how I came to that realization, because there was a time when I’d have thought this was sacrilege to think this, let alone to say it, or god forbid to write and publish it. So, it’s not a thought I came to lightly.

I was born after Dr. King was assassinated. I don’t remember a time when I didn’t know who he was, but I certainly remember when I learned the most about him, which was in third grade. Mrs. Mildram spent a week on Dr. King and the Civil Rights Movement.

Of course, since I was nine, and I was learning about Martin Luther King in school, this was History. He was a Famous Person. I thought of him like I thought of Mahatma Gandhi or Abraham Lincoln or George Washington. They were famous people. Although I didn’t relate to the presidents, I found King and Gandhi personally inspiring — especially King, because he was American, and hoped I could do something as amazing as them one day. (What can I say? I was a sucker for social justice issues from the womb, apparently. The only other event of third grade I remember aside from our unit on MLK was when we hatched chicks — which I found thrilling — and then our teacher killed one that was being pecked to death by its siblings, which horrified me. I wanted my teacher to put that chick in a separate, safe pen, but was told that since this chick was “weak,” it would be better for everyone to kill it now.)

Then, one day — I have no idea how old I was — I happened to be in our rabbi’s office, and I saw on the wall a picture of him walking with Martin Luther King. They were marching in a civil rights march. I don’t know which one.

I was shocked.

I see the picture so clearly in my mind because every time I went into that office, which was many times, over the years, my eyes went there first. But memory is a funny thing, and it can’t be relied upon for details, so I don’t remember if one of them actually had their arm on the other, but they clearly knew each other and were walking together. I also think I remember them smiling and waving, but again, I could be wrong. There were other people in the picture — men, I think — but I didn’t pay much attention to them, so I don’t know who they are.

How could my rabbi, who — although an intimidating figure to me, but a real person, nonetheless — be walking with Martin Luther King?

This led me to several thoughts:

  1. My rabbi was incredibly cool. He must be a really, really good person. Better even than I had thought.
  2. My rabbi must be really old — even older than I had thought. How was he able to even continue being our rabbi, being so old?
  3. They looked happy in the picture, and that made me sad because I knew that one of them, King, would soon be murdered, while here my rabbi still was, and here I still was.
  4. My rabbi was even more formidable, intimidating, and unreal to me from then on.

Looking back, of course, some of this is funny. But some of it is sad. It’s sad that instead of taking away from the picture the idea that a regular person, someone I knew, could be involved in something big and important and make a difference — instead of showing me that King was just a regular person who used his life to do extraordinarily important work — my take-home message was that because my rabbi knew this famous person, my rabbi was larger-than-life now. I could learn from him, but I could never be like him.

A lot has changed over the years. I’ve learned a lot about activism, social justice, racism, systems change, etc. I’ve been an activist. The more I did, the older I got, the less I could see doing anything as major and important and scary as Dr. King did.

Then, in the early 1990s, it was coming up on the long weekend for Martin Luther King Jr Day. One of my coworkers, Susie, mentioned that she’d be away because she was going down to Atlanta, Georgia for the celebration of Dr. King’s birthday.

“Oh!” I said, surprised. I didn’t know she knew people in Georgia.

Yes, she told me, she had known Dr. King, had been active in the civil rights movement under his leadership, was from Atlanta.

Wow.

Here again was evidence that Dr. King was just a person — a person who knew real people who I now knew. This time, some of that sunk in. I was starting to realize that Dr. King had not been a God, had not been a mythical figure. He was a person. His life was interwoven with the lives of others, and it was therefore natural, given his reach, that I would meet people who knew him. This was not ancient history, after all. I was born a couple of years after he was killed.

I wondered what Susie’s experience had been. I realized there was a lot about Susie I didn’t know — and wanted to know — and didn’t know if she wanted to share it with me. I remember being swept with sadness, because we couldn’t talk about this subject without the presence of Dr. King’s murder hanging in the air. I immediately wanted to convey how sorry I was about the sorrow and loss she must feel, but I was awkward and didn’t know what to say because Susie and I weren’t close, and I was still young and didn’t know yet that just saying the thing that’s in your heart, even (or especially) when it feels vulnerable, is usually the right thing. I don’t remember what I said, probably something that felt incredibly inadequate to the depth of my feelings, like, “I hope you have a good time!”

Of course, again, this put Dr. King’s age into perspective a bit, but not much. I wasn’t nine anymore, but I was in my early 20s, so my thought was, “Wow, Susie’s older than I realized!”

More recently, I’ve started studying Nonviolent Communication (NVC), which was created by Marshall Rosenberg based on his study of the nonviolent methods of Gandhi and King. NVC is not the same thing as nonviolent action, but there are overlaps. I’ve started to view some of the activities I used to take part in that I thought were nonviolent action as not truly nonviolent, from an NVC perspective. That’s a post for another time.

Where the Occupy movement has struck a chord within me the most is where it meets nonviolence and NVC. The people involved in the intersection of NVC and Occupy make the most sense to me; their ideas and efforts resonate the strongest with me. One of the best known teachers of NVC is Miki Kashtan who blogs at The Fearless Heart. A few weeks ago she posted Does Nonviolence Work? Notes from OccupyOakland October 24th. In this post, Miki writes about the effectiveness of nonviolent action (not about NVC); naturally King is part of her discussion. She included this picture of Martin Luther King marching in Memphis, Tennessee, on March 28, 1968:

A black and white photo of a march of mostly Black men in suits. Some hold signs. King is in the foreground. He is arm-in-arm with a man on either side of him. All three look worried.

Martin Luther King, Jr., marching with Rev. Ralph Abernathy, right, and Bishop Julian Smith, left, in Memphis, Tenn., March 28, 1968.

The first thing I saw when I looked at this picture was how scared Martin Luther King looks. He, and the men flanking him, have the expressions of those who feel fear in the pits of their stomachs, clenching their hearts, and yet they are resolute. They are determined, in the face of very real danger, to march right into that fear. Reverend Abernathy is looking out of the corners of his eyes — it’s not clear at what, but it’s something that worries him. Bishop Smith looks angry and concerned and utterly determined, with his lips pursed.

But King, the naked fear on his face mixed with determination, the youth, and the exhaustion, just socked me in the gut. “My god,” I thought, “he was so young, and so scared, and he did it anyway.”

Of course, intellectually I knew he must have been scared to do the things he did. He’d already been stabbed. He knew there were assassination plots against him. He’d been on the receiving end of violence at the hands of white police. But most of the photos of him show him looking thoughtful, determined. Often he is smiling or laughing.

This picture was taken eight days before he was killed, and he seemed to have an idea that was coming, given what he said in his last speech, “I’ve Been to the Mountaintop.” He was only 39. I am older than Martin Luther King was when he was assassinated. What he achieved in such a short time is humbling.

Of course, the first face you look at in this picture is King’s — his is the famous face, his is the emotional and visual center of the photograph, his is the one highlighted by the sun. And then the faces of the men whose arms are clutching his — also strained, determined, worried faces and tense arms and hands. And then the faces of the men and women behind him — scared, tired, wondering, determined expressions. Some surprised. Some looking shell-shocked by violence. King was in Memphis to support a sanitation workers’ strike, so my guess is that many in that crowd were sanitation workers trying to get a decent work contract. It took King’s murder to achieve that.

Being involved in a populist movement for the first time in my life, after having been in so many smaller movements that have not generally had public support, and having access to social media for the first time, has put me in contact with hundreds of people with whom I’d never have connected before. Not all of them share and understand my commitment to and involvement in queer rights, women’s rights, and especially disability rights. But these are people who believe in a movement that will make life better for all — at least, that is what I hope and think we all want. And I realize that yes, we are all just regular people, and we are trying to be a leaderless movement, but Martin Luther King did not have Twitter or Facebook or Youtube. The message had to be shared a different way. There would not have been a civil rights movement without meetings in churches and long marches and leaders at every event to spread the word.

I will never not be inspired by Martin Luther King. As a child, learning what he achieved, and what it cost him and so many others, touched me. Reading his words, listening to his speeches now, always move me profoundly. Perhaps this is partly because I do finally see him more clearly as just a human being, like me, and this gives me courage and hope for the social justice work I’m involved in, even as it humbles me.

Here is the “I Have a Dream” speech, “live” from the March on Washington, August 1963.

Here is a copy of the text of the speech.

Posted in Nonviolence | Tagged , , | 2 Comments

Corporate Control of People with Disabilities

This post was written for the December issue of the Disability Blog Carnival, taking place at my personal blog, After Gadget. Check out this big, fabulous carnival of posts relating to disability and Occupy here!

This is such a huge topic that I will only be able to touch on some of the points that are most glaringly obvious to me in the moment. Suffice it to say that corporate control of people with disabilities is deep and wide, and I encourage others who are intimately familiar with this topic to post additional examples in the comments.

(An obvious example was covered in earlier post on this site, by Anonymous. She discusses how corporations create disabilities by chemically injuring people, and then promote our isolation and oppression. There’s a lot more that could be said on this topic, which I hope to do in the future, but I wanted to focus on other issues here.)

I hope that those who are nondisabled and active in the Occupy movement will read and take this information to heart. We, people with disabilities (PWDs), are essential to the Occupy movement. We have been at the bottom of the barrel of the 99 throughout history, and this perspective gives us a keen understanding of the stakes. We also, for better and for worse, know a great deal about interdependence, and you would do well to learn from us on this topic, which I hear bandied about by occupiers, but which I have yet to hear “click” in its understanding of a disability rights perspective.

A quick overview is that PWDs in America have historically had, and continue to have, the highest rates of unemployment and underemployment, barriers to education, and poverty, of any other group in America. These statistics cut across all other demographics, including race and gender (with people of color with disabilities and women with disabilities having the highest rates of poverty, lack of education, unemployment, and other aspects of low quality of life and lack of social inclusion). In most other countries, PWDs have fewer rights and are even worse off than they are in the U.S., so this is a global problem. However, since I live in the U.S. and am not intimately familiar with the effects of corporate control over the daily lives of PWDs in other countries, my post will focus on what it’s like to be disabled in the US of A.

PWDs experience daily struggles for autonomy, survival, respect, and personhood at extremes that most others cannot relate to, at all. The economic collapse is not much of a shock to PWDs in this country (yet); we have already been living with unemployment, poverty, and in — or on the edge of — homelessness, for a long, long time. Now the cuts are starting that will make life harder for many of PWDs, but since most PWDs already live far below the poverty line and are in a constant struggle with bureaucracies to maintain the “benefits” and “services” that allow us to survive, it’ll be more of the same, but worse.

Corporate control over our lives in conjunction with government authority is not a shocking new concept; it is what we are used to. For example, people with mental illness — and people with physical illness who are misdiagnosed with mental illness — live with the constant threat of incarceration and/or forced drugging — to stay in their housing, to keep their health or other basic survival services, by the courts or police to keep from being jailed. Who benefits from the enforced medicating of people assigned the label of “mental illness”?* Eli Lilly. Pfizer. Bristol-Myers Squibb. Is it a coincidence that numbers five and six in the list of the top-ten money-makers for pharmaceuticals in 2011 are antipsychotic drugs? Of course not. While therapy and other non-pharmaceutical treatments or services for people with mental health disabilities are cut by state and federal government plans, psychotropic medications continue to be covered. Not surprising, since the people who approve the drugs (such as members of the FDA) are also the people who are making (money off) them.

But it’s not only mental health disabilities that are affected by corporate control. People with all sorts of disabilities are required to have the medical establishment’s approval for personal care services, transportation vouchers, access to alternative reading materials, assistive technology (from TTYs and video phones to wheelchairs to service dogs). It’s a rare medical practitioner who is not dependent on corporations. The insurance industry has its members on medical review boards, as members of the American Medical Association, as members of oncology and infectious diseases organizations that define what is or is not a covered service. (To see the effect of the insurance industry’s control over the medical establishment on the lives of people with Lyme disease, please watch the documentary, Under Our Skin, or read the book, Cure Unknown.)

This excerpt from the lengthy post, Evolution and Politics of Medicine, Doctors and the Medical Establishment in the U.S. sums up the situation pretty well:

By the 1990s, doctors had been pushed out of the driver’s seat of the wagon called medicine and were replaced by publicly traded corporations.

The medical establishment returned to the concept of prepaid health plans, now called HMOs, because it was the only way businessmen could practice medicine without a license. In effect, Congress and the states exempted the corporations that owned HMOs from being doctors.

For the first time, businessmen were permitted to make decisions regarding the practice of medicine including the treatment of patients and the choices of drugs available for treatment and determine who would be insured and what medical treatments would be paid for by private insurance carriers, Medicaid and Medicare.

At or about the same time, the CEOs of the major drug companies stopped being medical doctors. Now, the medical establishment is being run by MBAs, lawyers and accountants more concerned with the bottom line than the health of our nation.

If you do not have a disability, it probably does not occur to you that you need permission from someone in authority to take a bus, to read a book, to go to the bathroom, to talk on the phone, to leave your house, to enter a public space, to choose how to treat your medical condition.

If you have a disability, needing a doctor’s permission for basic daily tasks is normal.

We need to get a signed letter (at the very least) from a doctor, physical or occupational therapist, social worker, etc., which usually requires an in-person appointment with them. The letter is then passed through some state, local, or federal agency to be approved — or not — before we can go about the business of our daily lives. To have a parking space that allows us access to our home, we need our doctor to convince our landlord. To get that apartment in the first place, we need the housing authority to believe our doctor that we have the disability we say we do and have need of the type of housing (e.g., wheelchair accessible or with an outgassing room, etc.), that we say we do.

In fact, for some of us, it literally comes down to needing a doctor’s approval to take a shit. How we get to the bathroom and choose who wipes our ass is at issue.

For example, for me to get personal assistance services (PAS), I have to be on my state’s Medicaid program. I got on that program after applying to the federal Social Security Administration and being declared unable to work due to my disability. Then, to get on the Medicaid plan I’m on, I had to show this proof of my disability, but I also had to show proof that I am working ten hours a week or forty hours a month or more. So, I have to be disabled enough that I cannot do any “substantial gainful employment,” but I have to be able to work some. It’s extremely stressful to have to worry about being functional enough to try to work an average of ten hours a week.

Then, I provided information with supporting documentation (every time one applies for, or is re-approved for, a service, which is at minimum once a year, and for things like food stamps, can be as often as every one-to-three months, one has to provide supporting documentation) of my disability and of my income. Then, after getting on Medicaid, I applied to my independent living center (ILC) to get on PAS. I had to fill out forms for them, and my doctor had to fill out forms for them. Then, I had to be evaluated by a nurse and an occupational therapist. Then, they submitted their evaluations to the independent living center, who sent it to the state’s Medicaid program (who altered it), and sent it back to the ILC. Then the ILC had me fill out paperwork, and then, I was allowed to start searching for people to help me with my cleaning, bathing, food preparation, shopping, etc.

That’s just one example of one service — a service I’m very fortunate to have because I live in my own home. Many people with physical disabilities, intellectual disabilities, or mental health disabilities are incarcerated in nursing homes or other institutions because the nursing home and “long-term care” lobby makes money, hand-over-fist, by warehousing them there. Despite the Supreme Court’s Olmstead decision, which requires that people with disabilities be allowed to live in the least restrictive environment, in their communities, the nursing home industry continues to build homes and to partner with the medical establishment, insurance companies, Medicare, and other branches of our government to stick people in institutions that are frequently dangerous, abusive, isolating, and dehumanizing. And, for someone to live in a nursing home is much, much more expensive for tax-payers (because it’s Medicare or Medicaid who pay the nursing home bills) than for PWDs to live in their own homes and receive PAS. But the nursing home industry is a big, big, big lobby.

It’s not just the big things like where I live and who helps me day-to-day that require hoop-jumping. I’ve had to jump through hoops to get books on tape (which was the least bureaucratic process for a disability service, ever! Goddess bless the National Library Service!), assistive equipment (such as manual wheelchair, commode, oxygen, power wheelchair, assistive speech device, service dog, speaker phone, TTY, relay services — many of which I was turned down for), a parking placard (one of the hardest, nastiest, and most demeaning processes I’ve undergone to receive a “benefit”), paratransit services (wheelchair accessible public transportation), sign language interpreter services, disability-related modifications to my home, and on and on.

The lives of PWDs can be controlled by others in every conceivable way. It can range from entering or leaving our homes or other buildings; to who prepares our food or helps us in the shower; to whether we receive crucial information intended for the public (via media that may not be accessible to us); to how we get around inside our homes; to whether someone will suddenly decide we are not really worthy of a service or program and take away our income, our health insurance, our assistance animal, etc. And even the “private charities” and the “government agencies” are heavily influenced by corporate America.

Assistance dog organizations get donations from, and have members of their boards from, the pet food and pet product industry. Some medical equipment vendors have turned into huge corporations that provide one-size-fits-all products to people who really need specialized equipment, but who have no recourse once Medicare has been billed. And while ILCs were originally intended to provide freedom and independence to PWDs and are generally staffed by PWDs, they often become part of the “charity complex,” relying on corporate grants to stay afloat, which naturally influence the types or ways services provided, sometimes requiring that certain products or companies are privileged above others.

Here’s an example of the corporate control of an important aspect of my life which was intertwined with the medical profession and the “disability service” private, non-profit service: the ability to use the phone. When I first became disabled, I had multiple chemical sensitivity (MCS) and myaglic encephalitis/chronic fatigue immune dysfunction syndrome (ME/CFIDS). I needed a speaker phone with a headset. The headset was necessary because I was not able to hold the receive up to my head for a conversation. I needed a speakerphone because I was not able to go to meetings or other events, and I attended them by speakerphone. Likewise, for me to be part of something with friends or assistants, if I attended by phone, I needed the speaker part so everyone could hear.

I found out that Verizon had a program through my local ILC, where I could apply for a special phone. Of course, I had to fill out forms and get my doctor to agree that I needed this device. At the time, I had a doctor who was an asshole. Even though he knew I was disabled by pain and fatigue and chemical intolerance, he didn’t understand why I needed a phone with a headset and speaker. I had to convince him. I had to explain to him about how my chronic pain and exhaustion affected my ability to hold a phone up to my ear. And since I rarely left the house, and almost all my relationships were via phone, it was really important to me that I be able to use the phone! He did sign the forms in the end, but the stress that accompanies having to convince someone in power every time you need anything important is a form of oppression that PWDs all experience.

Then, I got the phone, and it reeked horribly, outgassing plastic fumes that made me sick. Of course, neither Verizon nor my ILC had any clue or interest about how to make or provide a telephone that is usable by a person with MCS. So, I had to outgas that phone for about two years before I could use it. Then, I used it for many years and was happy with it. Then, I was bitten by a tick and developed Lyme disease and two other tick-borne diseases, Bartonella and babesia. One of the symptoms of these chronic infections was that I lost the ability to speak, and I frequently was too immobilized by pain, weakness, and fatigue to write or type. In person, I used sign language, a communication board, mouthing, and other strategies to communicate.

Now, however, to have telephone conversations, I either needed an ASL interpreter in the room with a speakerphone, or a TTY. The speakerphone was necessary so the interpreter and I could hear what the other person was saying and then I could sign my half of the conversation while the interpreter voiced it. In some situations, a TTY was better, in others, an interpreter was. Paying an interpreter was a big issue.

I asked the ILC for a TTY, and they said I could have one if I gave them back my speakerphone/headset. I explained that I still needed the speakerphone because I still had MCS and ME/CFIDS, and now I also needed it for interpreted conversations. Further, because it had taken so long to outgas, if I ever wanted to trade back, it would be years before I could use the new one. They said their Verizon contract only allowed them to give one device to a person, even if the person had multiple disabilities that could not be covered by one phone. I appealed to Verizon directly and also got nowhere.

I had been haltingly conversant in ASL before I lost my voice. The longer I relied on ASL, the more fluent I became. Using ASL became the most effective and efficient (and least painful and exhausting) way for me to access my thoughts and communicate. I also constantly had problems with the relay system that I used for communicating with my TTY. Very often, communication was slow, garbled, and confused. Speaking directly to people who also had TTYs — thereby avoiding relay — was best, but some of my closest friends had disabilities that prevented them from typing. I knew Deaf people who used video phones and video relay, which involved signing instead of typing. Since I had friends who had video phones (including friends who were Deaf, interpreters, or otherwise knew ASL), I realized I could have real conversations with them if I got one. I contacted the independent living center again. This time, I did not go through the Verizon program, but spoke to the Deaf and hard of hearing services department. Even though I’m hearing, I explained my reasoning for wanting a video phone. I was told no, that they were for Deaf people, and that was that.

Meanwhile, my inability to communicate well by phone was taking its toll. During the months and years this went on, I tried to continue to speak to my psychotherapist, first by TTY relay, and then when that proved untenable, by hiring ASL interpreters, which was also not a good solution, as — among other reasons — it’s hard to discuss highly emotional topics in a language in which you’re not fluent. I urged my therapist repeatedly to get a TTY; she repeatedly refused. I became more and more upset with her. I didn’t know at the time that it was the cost of a TTY that was holding her back, that she didn’t realize inexpensive refurbished ones were available (even though I’d mailed her the information). Finally, I demanded she get a TTY, my ILC loaned her one, and she used it to terminate with me.

I hope that those in the Occupy movement will not see the story above as an example of one person’s individual misfortune of illness. That is the medical model of disability, which says that disability is an individual problem, that the cause of the problem is in the PWD’s body, and that the solution must be medical. The disability-rights perspective of disability uses the social model, which posits that there are multitudes of external, socially constructed barriers — barriers of architecture, environment, attitude, language, or technology — that oppress PWDs. That prevent people with disabilities from more fully engaging in society, from being granted access to the broader world. Nondisabled members of the Occupy movement need to understand stories like my struggle for telephone access as a failure of society, not of my body. If I could have had a decent hearing-carry over (HCO) telephone (like a TTY, but for people who can hear but not speak) and/or a video phone, I would have been able to talk to friends, to my therapist, to attend groups that met by phone, etc., and not have struggled like I did. The problem was not my being nonverbal, the problem was not even that the equipment I needed didn’t exist. The problem was that the company (Verizon) that had a state-mandated program through a non-profit agency wouldn’t accommodate my needs.

This is just one small example of one instance in my life. And I am assertive, educated, and have the confidence that comes with growing up with class and racial privilege. I was actually a provider in the disability services system before I became disabled, so I am exceptionally well-prepared to be a self-advocate. Yet, I have failed many times, over many years, in grappling with the bureaucracies whose strings are usually pulled by corporations. One thing that has been true for me is this: The more corporate control is involved, the less likely are my chances of having my needs met. For example, being disabled and having private health insurance is a nightmare of unbelievable proportions. It is a full-time job just to try to get them to cover the things that they say that they do cover, never mind attempting to get coverage of services or medications not “in plan.” Medicare, on the other hand, has been terrific. There are a few exceptions — such as eye glasses and dental care not being covered — but overall, nobody I know on public health insurance ever wants to go back to an HMO.

I hope nondisabled members of the 99 percent will perceive the story of a person denied Social Security or personal assistance services or assistive technology in the same way they view the story of someone losing their house to foreclosure. The elderly woman of color in a predominantly non-white working-class neighborhood who loses her home because of usurious lending practices does not exist in a vacuum. Her story is not just her personal tragedy. There are reasons that predatory lenders target poor people and people of color. Corporate culture is at work. Institutionalized racism and classism are at work.

When people with disabilities are forced to live in nursing homes, even though they could live independently with supportive services, or are denied reasonable accommodations to their Section 8 housing voucher, or are denied other crucial survival resources, corporations are often making money at our expense, and institutionalized ableism is at work. That people with disabilities have to get permission from doctors for things that people without disabilities don’t even think about is institutionalized ableism. That the medical profession is owned by the insurance industry, that the FDA and other government agencies are filled with, and courted by lobbyists from, members of industry, further entrenches institutionalized ableism.

*Please note that I am not opposed to people who choose to take psychiatric medications making that choice. On the contrary, I know many people who have found medication for depression, anxiety, bi-polar, and other conditions to increase their sense of happiness, control, and quality of life. However, I also know people who have been forced to take medications which made them life-threateningly ill, both physically and mentally. The issue here is not how one chooses to label or treat themselves, but that they do have the choice.

Posted in Ableism, Accessibility, Disability rights, MCS/multiple chemical sensitivity | Tagged , | 32 Comments

OccupyWorkPlace Speech by Denise Romano Washington Square Park GA

Many thanks to Denise Romano for allowing us to cross-post this speech. The original post can be found at her blog, Workplace Credible Activist, along with a lot of of other great information for workers and people who care about all workers’ rights — in the United States and internationally. Some of it might surprise you. Some of it might help you. Some of it might help you help your fellow human beings (and the planet).

Speech at #OccupyWashingtonSquarePark on 11/28/11 at 7pm General Assembly (audio for this will be added soon):

My name is Denise Romano 

I have trouble speaking –
because of disabilities.
If I can’t speak at some point –
someone here will help.
I might start coughing.
I’m not contagious or choking.
It’s just what my body does.
I am going to talk to you today
about Direct Action
and labor issues.
Point of Information
and especially
in case my disability company sees this speech;
I have taken a special medicine today
to help me speak to you.
I can’t take it often.
The Occupy Wall Street Declaration
mentions labor issues
in several different ways.
Before I get to Direct Action-
A short teach-in
about workplace issues and your rights:
If you have questions after this,
see my blog or ask me after this.
Point of Information:
I am a workplace expert-
a former whistleblower-
a former Human Resources Director-
and an author on labor issues.
I am not here to sell books-
In fact, don’t buy my book.

Get it at a library

or visit my blog-
where much of it is posted for free
I will be donating a copy of my book
to the Zuccotti Park library
and also here
if a library is established
I wrote it for Human Resource professionals-
to help them when they are pressured to violate labor laws-
which is an epidemic in US Workplaces.
This happens every day to millions of HR professionals
in private companies
in government workplaces
in academia
in non-profits
Many times employees think-
their Human Resources people at work-
are not to be trusted.
That might or might not be true.
Keep in mind-
they are employees like you-
and are also part of the 99%.
Most HR professionals-
are pressured daily-
to violate labor laws.
This is not okay with us!
I call upon you all-
to Occupy Your Workplace!
What does this mean?
This means:
Understand what your rights ARE
and ARE NOT.
We are not taught our workplace rights in school.
We are not taught Labor History in school.
By law,
workplaces are required
to post laws
so employees can understand them
When I worked & studied at Columbia University
they were posted
on a yellowed crumpled piece of paper
on the back of a door;
this is not unusual,
and it’s unacceptable.
Education is the first step.
Our labor history
is a rich history.
Many people suffered and died
so we could have
the 8 hour workday
weekends
child labor laws
health insurance
workers comp
paid sick leave
and other rights we now enjoy
I call on you to Educate yourselves-
your coworkers, your family & your friends
about your workplace rights
and responsibilites.
When we demand zero harassment
we must not engage in harassment
When we demand zero discrimination
we must not engage in discrimination
When we demand zero retaliation,
we must not engage in retaliation
When we demand zero bullying,
we must not engage in bullying
This means we must understand
WHAT those things are
so we understand
how NOT to do them
If your workplace
doesn’t train all employees about these things,
Ask them to do so.
It is their legal responsibility
to PREVENT
harassment, discrimination and retaliation
Unfortunately,
Workplace bullying is legal in the US
This means it is legal
for employees to be harassed and mistreated
UNLESS they are mistreated BECAUSE OF
race gender color disability religion age etc
This is not only unacceptable –
It is also unwise.
We have troops coming home
who have invisible disabilites.
Many disabilities are invisible;
PTSD is invisible.
My disabilities are invisible
unless I’m coughing badly
or if I don’t have my walker.
Many workplaces have employees-
who for various reasons-
think it is fun to bully and harass others
who are different from themselves in some way.
Most of us know
This is immature unnaceptable behavior.
Most of us have experienced this
or witnessed this.
One direct action you can take
is to Speak UP
if you witness this kind of thing.
It might make you nervous to do so-
Please consider doing it anyway.
There are different ways to do it.
I’ll get to that.
Tell your HR person or boss:
you want a policy to prevent this
you want a training to address this
you want all harassment and bullying stop.
If you don’t want to say so directly,
slip this speech under their door-
you can get it on my blog tomorrow.
There are more than 12 states
that have grassroots movements
to make workplace bullying unlawful.
Direct Action in workplaces
can be frightening-
and for good reason.
US Labor Laws are insufficient.
Unfortunately it is true
that many employees who speak up at work
and make legitimate complaints
despite laws that are supposed to protect us
wind up being disciplined or fired.
Unfortunately it is true
that US labor laws
when compared
to the labor laws in other first-world nations
are insufficient.
We are NOT okay with this!
We can and we must
demand better laws
and demand that existing laws
be fully enforced.
Here are some direct actions
that I have taken
and that I ask you to consider taking:
They have varying levels of risk
so choose what is best for you.
Sign a petition atChange.org (http://chn.ge/bO31L8)
to let the President and your congresspeople know
that you demand that US labor laws be enforced.
You can do this with a few clicks.
It states that currently most workplaces
consider labor laws to be optional.
Employers know
that most employees
don’t know their labor rights
don’t know about complex complaint procedures
and don’t know about important time limits
crucial to filing complaints
and getting justice.
Employers know
that most employees cannot afford an attorney
and that it is very rare
for lawyers to take cases on contingency.
Employers know
that most employees are a few paychecks away
from homelessness
and will sign a gag order
for money they desperately need
if they are fired for making legitimate complaints
What they do NOT know
is that we will NO LONGER accept this
We WILL educate ourselves
our co-workers
our friends and family members
and we WILL take direct action.
We will demand that our workplaces
provide trainings that address
harassment
discrimination
retaliation
safety
 and bullying.
Even though workplace bullying
is legal in every state,
smart workplaces create policies
that make it unacceptable.
We will demand that US labor laws
be enforced in workplaces-
-that instead of disciplining and firing
employees who make legitimate complaints-

We demand that workplaces

PREVENT violations of labor laws

 We demand
that workplaces discipline and fire
those who harass, discriminate, and retaliate-
even if they are in positions of authority
even if they are the top salesperson
even if they have tenure
even if they are famous.
You would think you could do this safely
in the US-
exercise your freedom of speech at work
Think again.
We have to do this very carefully.
One safe way to do this
so you do not get retaliated against
or disciplined or fired-
is to print out one of the pages on my blog
and slip it in the mailbox of your HR person or boss
There are pages on my blog that address them directly 
Another direct action you might take
is to get involved
in the grassroots movement in your state
to make workplace bullying unlawful.
Another direct action you might take
Is to talk to your union
if you have one.
If you don’t have a union,
consider trying to get one
or
just educate yourselves and coworkers.
Another direct action you might take
is to make legitimate complaints at work
in groups.
It is safer to complain in a group than alone.
Keep in mind
your complaint must be true.
Try using the communication tools
we’ve learned at General Assembly
to get consensus on a written statement
a group of you can sign.
If you only witness harassment or discrimination
but it hasn’t happened to you,
you can still complain about it-
and I hope you will.
We must remember
those who harass and discriminate and retaliate
are often clever.
They know better than to say or write
“I’m firing you because
of your race or gender or disability or age”
But we are also clever-
And we will NOT accept violations of labor laws.
I encourage you all-
when you complain
to be diplomatic,
gracious,
direct and professional.
Write it down.
Make it easy on yourself
There are sample memos on my website-
feel free to use them.
I know from experience it is very difficult
to think clearly enough
to write an effective memo
when you’re being harassed.
I encourage you all
to stand in solidarity
with each other at work
and with all workers
in the US and in the world.
Do not isolate or fear
those employees who complain;
they need your support
they need your solidarity.
I encourage you all
to not take sides
in workplace issues
if you don’t have the facts.
Get the facts
whenever you can.
Many times,
workplaces will say
that someone is incompetent
as a way of retaliating against them
because they’ve made legitimate complaints.
Get the facts as much as you can
before you give your solidarity
against someone
If your workplace or manager
wants you to sit through
a lecture or video
about why unions are not a good idea
consider reporting your employer
to your state Attorney General
for union-busting.
Please think about
where the things you buy are made.
Please learn about
slave labor around the world.
Please consider
boycotting goods made in China
or sold at companies in the US
that have rampant abuses of labor laws
e.g. Wal-Mart 
If you are unemployed,
there is a link on my blog
with job-search resources.
If you have experienced
harassment
discrimination
retaliation
bullying
unsafe working conditions
union-busting –
You can tell your story
on my blog-
sometimes telling the truth can help.
The more we speak up and tell the truth
about this epidemic
the less they will be able to get away with it
Labor Rights are Human Rights
Labor Issues are Political Issues
Think before you vote-
There are serious consequences
to voting-
and not voting.
People died so we could vote
Just as there is a serious problem
in the American Justice System
and some get harsh sentences or the death penalty
while others go free –

The same kind of thing happens

in US workplaces.

Those in high-level positions
are often let off the hook
or protected from discipline or firing –
while the rest of us
are laid off, disciplined or fired
even when we’ve done nothing wrong.
What happened to Shirley Sherrod
happens every day to millions of American workers
But they have no recourse.
We Are All Shirley Sherrod!
We are All Troy Davis!
We are All Scott Olsen!
I stand in solidarity
with anyone and everyone
who works for a living
all over the world
and who protests peacefully
and practices freedom of speech
and freedom of assembly
I hope you all will, too.
Thank you.
Posted in Uncategorized | Leave a comment

Who Are My Brothers and Sisters in the Struggle for Justice?

This post is by Big Noise and is cross-posted with her permission.

It is impossible for me to express the degradation I feel. A progressive group put on a one-day workshop Sunday. I was not allowed to go. My friends went; my husband went; but not me. I wasn’t excluded because my big mouth got me in trouble again; not this time. I could not attend because a left-leaning group of people made a decision to have the training in a three story building with no elevator. No way to get in; no way to participate.

The back of a person in a manual wheelchair sits looking at a set of steps.

We with mobility disabilities know better than to show up to an unfamiliar location and expect to get in; we who are deaf or hard of hearing know better than to show up at a meeting and assume an interpreter to be there; we who are blind know better than to show up and expect to receive materials in alternate formats.

A week and a half ago my husband and I learned about the training; we signed up and worked on carpool details. We were excited about heading out of town for the event. I was positive it was not going to be a problem; this was after all, put on by a group of freedom fighters. But caution and experience made me ask about accessibility.

The organizers assured me, that accessibility was a grave concern to them; they discussed it at length. But in the end they decided to have the training in an inaccessible location. They thought the fact that they struggled over the issue should make me feel all better. I should understand that they are trying to do a good thing. I should quiet myself, settle down, and stay home. Maybe next year…

Being quiet is not my long suit. In the next set of exchanges, I suggested that they could have postponed the training until they found an accessible site. From the tone of their electronic communications, they felt irritated or frustrated by my insistence that an injustice anywhere (by anyone) is an injustice everywhere. Their response was that the event was too close to postpone. I, in no way, was suggesting they cancel the event now; but that they should have postponed it in the planning phases until they could access a suitable inclusionary location.

They told me if they HAD TO accommodate people with disabilities they would HAVE HAD TO cancel the event altogether. I was outraged that they would be willing to blame people with disabilities, (well, not all of them, just me) for preventing the event by my insistence that they do a bit of self criticism about their discrimination. Is that not blaming the victim? I was the one facing discrimination; yet, if I kept telling them that they were wrong to exclude people, they would have to cancel and it would be my fault.

The back of a brown-skinned person of indeterminate gender in a manual wheelchair with a backpack sits looking into the entrance of a building with two flights of steps to get inside.

One person told me I should stop picking on the organizers who are just trying to make the world a better place. For whom? Everyone– or just those people who were most like them? It was a bourgeois excuse. I told them that I too, was trying to make the world a better place. It was my wish to join others who were trying to do the same. Was providing free meals more important than full inclusion? It is too ludicrous to even consider.

They assured me that they had no money and had tried as hard as they could to find a free accessible location, but could not. I asked them if they had contacted the centers for independent living in the area: LINK in BellevilleIMPACT in Alton, or; Paraquad in St. Louis to help them find a location. There is also ADAPT St. Louis. They had not contacted any disability related organizations. Only one person acknowledged that I did have a point there. That particular planner gave me what seemed to be a sincere apology, but still many excuses. I thanked him for at least listening.

Watching my husband and our friends leave our house for the event early that morning filled me with emotions ranging from deep sadness to humiliation. I spent the day, locked away from the information, from the camaraderie of like-minded people, from the synergy that can only happen when people are together attempting to solve society’s serious inequities.

Now, I know that I should not feel degraded or humiliated; I know the problem is not a personal failure on my part. But, that is how it feels on the receiving end of bigotry. Marginalization gets internalized; no matter how well-intentioned the perpetrators may be. A worker feels a personal sense of failure if employers won’t hire her because she has been under or unemployed for too long. African-Americans feel it when they walk through a jewelry store. Women feel it when no man volunteers to take notes at a meeting.

What the disability and other civil rights movements did in helping me understand this, the Occupy Movement is doing for the 99% today. The fact we face systemic problems does not relieve individuals of privilege from their responsibility to fight their own privilege, whether based on race, sexual orientation, education, or disability. And, we must never let the oppressors control our sense of self.

My husband reported that at the meeting summation the organizers still did not get it. One of the organizers told him, “The complainant was happy with resolution”.

Mike responded, “The complainant is my wife… and she is NOT happy.”

The organizer flippantly tried to end the dialogue by saying, “That sounds like something you have to take care of when you get home.” Seriously? Was he saying all I needed was a good “poke” and this wold go away?

That is when young man in the back of the room criticized the organizers for not taking the issue seriously, as did our friends who attended. They were all met with boos from the organizers supporters.

They never criticized themselves for making their exclusionary decision. Rather, people defended the organizers for their hard work. The lack of accessibility was excused because of the lack of funds; more bourgeois blather. This was a conference for the predominately white, middle class radicals. Organizers believed they would only support their efforts if it was free.

I have been a member of small organizations that operated on left-over grocery money most of my adult life. We always had and have inclusive meetings. Their inaccessible meeting happened, not for the lack of funds, but for the lack of will.

Inclusion is just one, but an important reason I joined the Occupy Springfield Movement. To a person these young enthusiastic people, relatively new to progressive politics, (when compared to those of us who have been around since the ‘60s) inherently knew that it was wrong to exclude anyone and found accessible meeting locations to hold our General Assemblies. I should not have to feel grateful for that; but, I am. They are a microcosm of the new socialist women and men developing… And I love them.

Brightly colored cartoon. A brown-skinned woman in a purple skirt-suit with a brief case holds papers that say "Special Needs." A white man with curly blond hair holds the hand of a boy who resembles him. They are standing in front of a wall with a sign that says "Special School" and then the rest of the text is crossed out, which read "for Learning Disabled Children." Tacked underneath the sign is a hand-lettered sign that says "for the teaching disabled." The man says, "There's nothing wrong with the kids -- it's the tutors who have a teaching disability."

Let’s hope that the training organizers can learn a thing or two from the people they attempt to teach.

Looking for more fun? Check out: See the Invisible Backpack of Able-bodied Privilege Checklist

Posted in Accessibility, Disability rights | Tagged , , , , , | 4 Comments

OccupyVoice: A Resource for Anyone Affected by the Occupy Movement

I believe that the way that I have been most able to contribute to the Occupy movement has been through my involvement with OccupyVoice. My work with OccupyVoice has been to help staff calls, to encourage and inform others that the service is available, and to help get the word out in general about this resource. I’m hoping that this post will help a great deal in letting those who care about Occupy know about Occupy Voice.

Through OccupyVoice, I have learned a great deal, made friends, received support, and helped to support people “on the ground” in the Occupy movement. When I’m on a call, and I hear new callers expressing joy, gratitude, relief, or other emotions that mean they were touched by their experience and feel enriched by it, I feel immeasurably enriched and empowered. The fact that I can do everything from my bed — on the phone and/or on the computer — is wonderful for me.

What is OccupyVoice?

It is a dedicated phone line staffed by people trained in nonviolent communication (NVC) — also called compassionate communication — to provide support and strategies to anyone who needs it, whether pro, con, or undecided about the Occupy movement. The main feature I have been involved in is the phone conference center. This is a telegroup that anyone can call in to and be heard about any concerns arising from the Occupy movement or to learn de-escalation and nonviolent communication strategies. This service is available as a group phone session (conference-call style), or if someone prefers, for one-on-one empathic support, every day of the week, from 4 PM to 6 PM Eastern Standard Time (9:00 PM Greenwich Mean Time). No registration is required, and anonymity is available for those who want it.

Call in to OccupyVoice to experience . . .

  • Effective and compassionate communication
  • Conflict/anger transformation
  • Effective communication skills training
  • Role play/feedback
  • Being heard and understood
  • A place where people really share and listen

Who is behind OccupyVoice?*

We call ourselves OccupyVoice because we believe that what everyone has to say is important. This effort is run by volunteers. Callers pay only their phone service provider regular rate. We have multiple call-in lines to try to provide local call-in numbers, when possible. The call-in number we started with was for New Yorkers (because it was for Occupy Wall Street), at 347-304-9152; you can still use this, or you can use one of the many other numbers listed on the website.

The volunteers are trained in NVC, which was developed by Dr. Marshall B. Rosenberg. In NVC, we have some premises that we think make for a very powerful, effective, and compassionate way of connecting to other human beings:

1) We are all human beings, and we’re all just trying to get our needs met. No matter what a person says; no matter what a person does; no matter their tone of voice or the job they hold; no matter how scary or appalling we may find what a person says or does; they are human beings – like us – trying to get their needs met.

From this perspective, the more we can hear one another’s needs, the more likely we are to come to an understanding of what strategies will work for both of us (or all of us). From this perspective, getting my need met at someone else’s expense is not a long-term solution. The longer we can stay in dialogue, the better chance we have of coming to this understanding of one another’s needs.

2) We can hear one another better if we empathize – but this is a certain kind of empathy, a certain quality of listening. We define this type of empathy as being present to the other person, moment to moment, showing that we are listening to them and hearing their concerns with unconditional positive regard for them. The more we can be present to this degree, the more likely they are to eventually be able to hear what we need. If, instead, we argue, debate, defend ourselves, or tell them what we think is wrong with them, there is a greater likelihood that anger will escalate, people will disconnect from one another, and we won’t get much accomplished.

We are an international group — callers and staffers. Some of the people who staff the line have been studying NVC or related practices for decades. Others, like me, have only been studying it a couple of years. Staffers include people from the US, Canada, Argentina, Portugal, Israel, and elsewhere. Some staffers are fluent in Spanish, French, German, Portuguese, and other languages.

Two adult giraffes standing in the tall grass with open sky behind them. They are pressed chest-to-chest, so that their necks make a V-shape, extending to the sky.

Giraffes, heart-to-heart

The giraffe has come to be a symbol for using NVC and giving empathy to oneself or others. They have the largest hearts of any land animal.

When is OccupyVoice available?

As mentioned above, there is a two-hour staffed call every day from 4:00 to 6:00 PM Eastern Time (3-5 PM Central, 2-4 PM Mountain, 1-3 PM Pacific).

Although the line is open around the clock, we currently have it fully staffed only for those two hours a day. However, sometimes staffers hang out there at other times, so you can try at another time, and you may or may not find someone else there.

We are also working on a system where those who are seeking the services of OccupyVoice can text, tweet, or call for support, and a volunteer will get back to them. I’m not sure yet how many volunteers are available to do this, but if it’s something you’re interested in, you can get in touch using the website, and someone involved with OccupyVoice will do their best to connect. Please visit the OccupyVoice website for further information on these options.

How do I call in?

Any day of the week, at 4 PM EST or 1 PM PST (9 PM GMT), you can use any of the access numbers at the OccupyVoice website to call in. They all take you to the same call. Find USA access numbers here, and international access numbers here. If you’re in the USA and you can’t find a number that works for your area, you can use the toll-free call-back option. (Note: This feature seems to work fine for some people and not at all for others, and we don’t know why yet.)

How can people who Occupy from home use OccupyVoice to support the movement?

  • If you know of people who have suffered or witnessed violence or who are seeking an outlet for their emotions, pass on the link to the OccupyVoice website or give them the phone number and call-in times so they can get support.
  • If you know people — including, but not limited to, those in a marginalized group — who really need to feel heard and affirmed that their needs matter, to recharge their batteries, or to communicate when they do not believe they are being heard, OccupyVoice can be useful.
  • If you are a business owner or worker that has been affected by a nearby encampment, a city or government official, or a police officer whose job and/or life has been affected by Occupy, you can call for support or strategies for dealing with conflicts.
  • If you know occupiers who are running into new challenges in trying to strategize with winter descending, police or city crack-downs, conflict among members, calling OccupyVoice might help them get clearer on their needs and how to listen to and communicate with others at the encampment.
  • If you are in favor of the Occupy movement, but friends, family, or colleagues are opposed to it, OR if you are opposed to the Occupy movement, but your friends, family, or colleagues support it, calling OccupyVoice can help you develop strategies for listening to and understanding others who have a different perspective and find common ground in caring or connection.
  • If you are committed to nonviolence as an effective means of social change and want to learn more about understanding and applying deeper levels of nonviolence, OccupyVoice can provide information and resources.
  • If you have been following Occupy events from home — watching youtube videos, following it on Twitter, reading about it in the paper or on TV — and are feeling worried, hopeful, frightened, frustrated, or helpless, OccupyVoice can provide you empathy that will help you get clearer on your needs and offer strategies.

For anyone to whom the descriptions above apply, or anyone else, OccupyVoice is a resource.

My personal experience on OccupyVoice

Most people who call want to receive support for concerns arising from the Occupy movement or learn de-escalation or nonviolent communication strategies. Perhaps even more than dealing with what happens in the moment, OccupyVoice can offer support and strategies for responding to the aftermath of both blatant violence as well as in-group conflict, and for long-term healing, peace-building, and transformation of consciousness. When I’ve taken part in OccupyVoice, we’ve heard from callers who have witnessed or tried to intervene in violent situations, people who are trying to spread harmony and understanding among comrades, people who are frustrated by lack of progress toward their group’s goals, people who have experienced discrimination, people who have witnessed police violence, people who have seen videos of camps being destroyed or people being hurt, and other situations.

What’s your experience?

I have both given and received support, and it’s been a wonderful experience for me. I’ve learned a lot and met many people who have touched and inspired me. Every time I’m on the call, I learn something new.

I think it would be extremely useful for those who have called in to the line to post about your experiences in the comments. After all, every call is different. If you have used OccupyVoice, how did you feel about your experience? What did you learn? What did you take away from it? Have you gone back? What would you most like others to know about this resource?

– Sharon

*Most of the “Who is behind OccupyVoice” section, except for the last paragraph, was written by Suzanne Jones, a frequent facilitator on the daily call. If you’d like more information on OccupyVoice or to get involved, please drop her a line at suzannej [at] ymail [dot] com. (I love being on the line when Suzanne is facilitating. I have learned a great deal from her warm, compassionate, and wise facilitation.) A few other phrases and sentences were borrowed from others creating documents to spread the word about OccupyVoice; I am grateful to them for these additions. However, I take responsibility for the contents of this post, and hope you will comment if you find any errors.

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