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.

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.

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.

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.

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 Belleville; IMPACT 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.

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

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.

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.

Activities for #OccupyBlackFriday / Buy Nothing Day! #Occupyxmas

Those who Occupy from home have a real opportunity to participate in an important action this week. Did you know that this Friday, November 25/26, is “Buy Nothing Day” (BND)? Did you know that this year, it’s also known as “Occupy Black Friday” and part of #occupyxmas?

The goal of Buy Nothing Day is to raise awareness about consumerism and its effects and to reflect on one’s own buying habits. BND was launched by the magazine Adbusters in 1992. This year it will probably get more attention because it’s been embraced by the Occupy movement (#occupyxmas). With its typical biting wit, Adbusters sets the stage:

You’ve been sleeping on the streets for two months pleading peacefully for a new spirit in economics. And just as your camps are raided, your eyes pepper sprayed and your head’s knocked in, another group of people are preparing to camp-out. Only these people aren’t here to support occupy Wall Street, they’re here to secure their spot in line for a Black Friday bargain at Super Target and Macy’s.

Adbusters suggests not just a “consumer fast” on this day, but also participating in various “shenanigans.” This is smart. There is more to not doing something than doing nothing.

Huh? In the dog training world, we say, “You can’t teach a negative.” For example, people say, “I don’t want the dog to jump up on the guests.” Okay, fine. What do you want the dog to do? Because dogs, like people, have to be doing something. We don’t cease to exist when abstaining from a certain behavior. Peeing on the carpet, humping the guests’ legs, or chewing the guests’ coats all fit under the heading, “Not jumping up.” Instead, we usually teach the dog to sit for petting or to go to its bed for a chew toy when the doorbell rings.

In other words, it’s usually a lot more productive to tell someone (whether that person is a dog, a human child, or yourself), “Do this (desirable behavior)” as opposed to, “Don’t do that (undesirable behavior).” As I indicated in my dog example, whatever “that” is can involve lots of other options that might be equally undesirable! In the case of people, we want to ask others and ourselves not to take out the credit cards, buy from the big box stores, go into debt, and purchase more petroleum-derived and -produced products that will go into the landfill. So what should we do instead?

The nice thing about an action like BND/Occupy Black Friday is that, since I pretty much live in bed, I’m not being exhorted to go out and do various things that I cannot do. However, there is also the Internet equivalent of Black Friday, “Cyber Monday,” when all the online sales take place the weekend after Thanksgiving. So, it’s not just about not going out. I could support the United Corporations of America right from bed, if I wanted to. But I don’t want to. (I don’t want to pee on the carpet, either.) What will I do?

Here’s a list! These ideas were generated by the creative and clever people on the Occupy at Home Facebook page. I hope you’ll add your ideas in the comments!

In no particular order, here are some things to do as Occupiers at home on Occupy Black Friday:

Educate Yourself (& Act on that Knowledge)

Lots of people enjoy watching a video the day after Thanksgiving. It’s a great thing to do at home with family and friends or by yourself. Here are several movies — some of which you can watch free, online — that will deepen your understanding of the importance of BND/Occupy Black Friday.

Access note: I regret that I don’t have the spoons or time to caption and/or transcribe these movies. Certainly, the full-length documentaries can be rented as DVDs with captions. I have not yet been able to find out if any are available with audio description. (If you have links to described or captioned versions of any of these films, please put a link in the comments, and I’ll add it to the post.)

- What Would Jesus Buy? Produced by Morgan Spurlock, this is a truly educational, inspirational, funny, and surprising film. I rented it on a whim because I thought the title was funny, but I learned a lot about our debt-based economy, about how people work all year to pay off their Christmas-shopping debts, and about how Disney and other multinational corporations that make things for American children do terrible harm to children (and their families and homes) in foreign countries.

A trailer for it is below. If you have already seen the movie, you can also watch videos, listen to podcasts, and read blog posts by Reverend Billy, the star of the film and the leader of the Church of Earthaleujah. Heck, you could memorize some of their clever anticonsumerist Christmas carols sung by the Church of Stop Shopping Gospel Choir and go enlighten and entertain your neighbors!

- Wal-Mart: The High Cost of Low Price. You can actually watch the documentary at home, for free, on youtube! I knew there were problems with Wal-Mart before I saw this Robert Greenwald documentary — in the words of one customer review: “Closure of family stores, forcing its “associates” to work overtime without compensation, depriving them of a living wage, and forcing them onto welfare, destroying central business districts of small communities, diverting tax revenues from school districts, etc.” I knew they sold products made overseas in sweatshop conditions and full of toxic ingredients.

What I hadn’t realized just how intentional and single-minded was Wal-Mart’s mission to eliminate all competition in every community it enters, going to great lengths to do so. One example that shocked me was how one huge Wal-Mart will enter a community, squeezing out many of the local economies and then how they will open a second enormous Wal-Mart in a neighboring community; between the two megastores, all the other stores go under. Then, Wal-Mart will close one of those two massive complexes, leaving it a vacant building, and the only place for people to buy anything they need will be the one remaining store, which often means driving distances without public transportation for many people — their time and gas consumed by buying necessities from far away.

After you watch the documentary, please visit BattleMart, an activist resource, which provides data, information, resources, a blog, and activist tactics to try to prevent the destruction of communities by this behemoth retailer. Even if you cannot afford to boycott Wal-Mart entirely, BattleMart provides information on actions you can take that can make an impact. (For example, Wal-Mart has cornered 25 percent of toothpaste sales in America, so if nothing else, please buy your toothpaste elsewhere.)

Here it is!

- The Story of Stuff is another documentary that can be watched in its entirety, for free, on youtube! (It is closed captioned in Croatian, but if you choose the translation into English option, the captions are pretty accurate.) Here’s a description from the video:

From its extraction through sale, use and disposal, all the stuff in our lives affects communities at home and abroad, yet most of this is hidden from view. The Story of Stuff is a 20-minute, fast-paced, fact-filled look at the underside of our production and consumption patterns. The Story of Stuff exposes the connections between a huge number of environmental and social issues, and calls us together to create a more sustainable and just world. It’ll teach you something, it’ll make you laugh, and it just may change the way you look at all the stuff in your life forever.

- Hooked on Growth – A documentary with trailers and websites and a blog, and all sorts of cool, educational information that challenges the core American value of endless growth (in all areas). From their YouTube:

A documentary examining the superstitions and addictions we need to leave behind in order to become a sustainable civilization. Scheduled for completion in 2011. Join the global grass-roots network helping to fund, produce, distribute and spread the word about this non-profit project at http://www.growthbusters.org

Here’s the trailer: 

Here’s a video focused on the filmmaker, David Gardner: 

Chris Martenson’s video course on how the entire monetary system works (and why it’s crashing) is important information for individuals in building resilience into your life, and for the world in terms of the type of activism we choose to do. He foresaw the events that have been unfolding in the last couple of years. Particularly relevant for Occupy Black Friday is The Crash Course, Chapter 5: Growth versus Prosperity.

You can watch the entire Crash Course online, for free! If you want to see a condensed, 45-minute version of it, that’s available here. I did not see information on captioning, however The Crash Course is available in Spanish, German, and French, as well as English.

Get Playful! Get Creative with “Your Stuff”

Here are an assortment of fun ways to take part in BND/Occupy Black Friday.

- Watch George Carlin’s classic comedy routine, “A Place to Put My Stuff.”

- Sort through closets, sheds, cupboards, etc., and collect stuff you don’t use or need and post on Freecycle or Craigslist to give away, or depending on what you have, some of it might be of use to a battered women’s shelter, a homeless shelter, or an independent living center.

- Get crafty. Is there something you want or need? Is it possible you could make it yourself? My partner and I like to play backgammon. I can’t tolerate most backgammon boards due to my multiple chemical sensitivity. Then my partner found a set that was all made of glass. It was great, and we used it often until a few years ago, when we dropped the board and it broke. We still had all the pieces. Finally, I started badgering her that I wanted to make a board, which we did! It was fun! We used a piece of cardboard from a box we didn’t need and covered it with black construction paper, using purple construction paper to make the points. That’s all it took — some cardboard, a few pieces of paper, some scissors, and a nontoxic glue stick. All things we already had around the house. We’ve been playing backgammon almost every night since. It’s fun, it was cheap, and it smells like kindergarten.

- Set up a skillshare. A skillshare is a way for people to teach others skills that they know, and vice-versa. It can be done formally, in classes at the local library or community center or town hall, or one-to-one at get-togethers at someone’s home. This website, Just For the Love of It, provides information and resources on skillshares, toolshares, spaceshares, and other ways to participate in a gift economy. You have skills to offer, even if you haven’t thought of it. What kind of skills might someone want to learn? Playing bridge, knitting, bicycle repair, changing the oil in your car, editing, saving seeds, raising poultry, astrology, getting organized, learning another language, and anything else you can think of!

- Sometimes you really do need to buy things — food, clothing, soap, towels, a dog collar, a snow shovel, gardening supplies, or whatever. Because of Wal-Mart’s tactics to make them the only game in town, this might leave you with no nearby options for shopping other than a big box store. If you don’t drive, this can be particularly problematic. One possible option — and a good time to do it is around the holidays when you are in touch with family and friends — is to look into a shopping carpool trip or trips. Together, you can research family-owned and -operated or other small businesses in your area for those items you really need or want. If there aren’t any or many nearby, talk to family, friends, neighbors about setting up a carpool for shopping at independent, small businesses for the things you really need or want.

- When you do shop at small or local businesses, if possible, pay with cash or a check. With every credit card purchase, small businesses lose a portion of their profit by paying a fee to the credit card company. You can help small businesses by paying with cash or checks.

- Write letters to the stores you might normally go to, and tell them why you won’t be shopping on that day. Let them know what they could do to encourage you to shop there on the other days of the year, such as selling products made closer to home, environmentally friendly products, and products that are produced (harvested, created, shipped) in ethical ways or from union labor in your country.

- Spend time with friends and family sharing what you enjoy or appreciate about each other, realizing that the gift of companionship and love is priceless! (Cheesy, but true.) This just in! Occupy Together has created a lovely little gift exemption card (pdf) that you can print out and give to family and friends explaining why you’re participating in #occupyxmas. Check it out!

- If gift-giving at the holidays is important to you, spend some time putting thought into what small handmade and/or locally-sourced gifts would really resonate with your loved ones, or what you could make yourself.

- Write a letter asking people who would normally buy you a gift to make a donation in your name instead. That’s what I’ll be doing this year for a cause very close to my heart. I was planning on doing this anyway, but having a day set aside for it will help me to stop procrastinating.

I hope you found this helpful, informative, and inspiring. What did you do (or what do you plan to do) on Buy Nothing Day? How did it feel? What ideas do you have to share with others?

If Corporations Aren’t People, Neither Are People Corporations

As many of us try to sort out specifically what the Occupy/Decolonize movement means to us, which issues we want to focus on, what changes we want to see, we are discovering that the movement means many things to many different people. That’s one reason why I like this Facebook page, Occupy: The People’s Changes and Solutions, which asks everyone to post their number one issue or concern they’d like to see Occupy address.

I think many of us are starting to realize that for this movement to realize true change, it needs to be about more than rebelling against what we don’t want. We need to start focusing on what we do want, and working and living those changes. I hope there will be more posts here on this topic, by several bloggers, on many aspects of this issue. (Please indicate in the comments or email occupiehome at gmail.com if you’re interested in writing a post!)

One issue that concerns me is the “us against them” attitude I see in many comments on Twitter and Facebook. I have seen through the “us against them” goggles for much of my life, and I often don’t realize I have those goggles on because they’re so comfortable. They fit so well. But they distort the world. The water is really much more murky than it appears.

I’ve read on signs, on blog posts, in tweets, on Facebook rants, that all bankers or all people who work on Wall Street or all people who work for certain big banks are “crooks,” “predators,” or are the one percent. I feel sad and worried when I read these statements. One reason these statements bother me is that they are not factually accurate; most of those people are not the one percent. I’d like to find out who all the one percent actually are, but I haven’t had a chance yet to do the research. I know most of the people listed by Forbes as the top ten richest people in America are not bankers. Do you know who they are? Here’s a hint: most of the ten richest people in America have the last name Walton or are part of the Walton family. Who are the Waltons? They are the owners of Wal-Mart.*

In addition to the fact that it’s not accurate to assume that everyone in a certain industry is the one percent, I’m bothered by equating the people who work for institutions that have done damage with the institutions, themselves. One of the central topics of the 99 percent movement — one that I strongly agree with — is that we must find a way to banish the Supreme Court decision that declared that corporations are people. Corporations are not people. I think there is consensus in the Occupy/Decolonize movement about this. It’s an idea that would be laughable if its effects weren’t so tragic, wide-reaching, and destructive.

At the same time, I think it’s important to remember that people are not corporations, either. Someone who works at Bank of America or Goldman Sachs is not Bank of American or Goldman Sachs. They are people, like you and me. They have favorite meals or holidays. They have parents, children, and siblings. They eat and sleep and pee and poop. Corporations don’t do or have these things. The manager or even owner of a branch of a multinational bank is not the one percent.

But even the people who are the one percent are still people. Corporations must be held accountable for their actions, and the people who make those decisions that adversely affect other humans, other species, and the earth are responsible for their own actions, too. At the same time, it’s important to me that the Occupy movement not paint with such a broad brush that we lose track of the humanity of all people.

Yes, many police officers have acted in ways that I find very upsetting, have been violent, have hurt and terrified people. I cannot condone those actions. Does this mean all police officers are horrible people or have perpetrated violence? I don’t think it does. In fact, I know that there are police officers who do support the Occupy movement.

Those of us who Occupy at home can help the movement by doing research into what exactly we want to change and how we want to bring those changes about. We can look into who pays which lobbyists to influence which elected or appointed officials, and what the results of that have been. We can write legislation. (Did you know that yes, you, a regular citizen can work with your elected official to write legislation which they can sponsor?)

We can tell our stories. We can educate each other about the corporate interests tied in with certain charities and decide we are going to find better ways to help those the charities are supposed to be helping. We can teach each other — over dinner, in blogs, on boards or list-servs, on Facebook pages — about what it’s like to be a single mother working as a nurse, or a university professor who has bipolar disorder, or a person with MCS living in a tent in the desert, or a teenager who got kicked out of their family for being transgendered, or an African-American vocational rehabilitation counselor who has to buy bottled water for his family to drink because his tap water is polluted with PCBs. And yes, we can also listen to what it’s like to be an experienced police officer who is trying to talk down amped up rookies who have gotten riled when protesters told them they are a disgrace to the uniform or that their mothers would be ashamed of them. We can empathize with a midwest bank manager who is scared for his safety when his place of work is surrounded by hundreds of people chanting that he is a crook. We can influence the direction of this movement by how well we listen to everyone and work for everyone to get their basic needs met and not confuse the actions of a corporation or its CEO with the value of the lives of all the people who work for that corporation.

We can all agree that corporations aren’t people. We need to change the twisted law that says they are. While we do so, we must remember that people are not corporations, either. Everyone’s lives and needs matter. Many of us feel very angry when our humanity is denied by taunts from people who say occupiers are “hippie trash,” or by suffering physical and psychological harm from police officers when practicing our First Amendment rights, or by being told to “go back to your country” because we have dark skin. Let us not meet violence and dehumanization with more violence and dehumanization. Instead, let’s recognize all people’s humanity and that all sentient beings have needs. From this place, let us continue to work to meet those needs.

*I’m working on a post about Wal-Mart. I would like to see people in the Occupy movement become aware of the practices of Wal-Mart that are detrimental to people in the US and abroad, and to change our relationship with Wal-Mart.

Occupiers: How Do/Will You Represent Me?

There is so much happening all the time in the Occupy movement that it’s hard to write a complex, well-written post that encompasses what I want to say on any one topic. I have decided, therefore, for some of the issues that are huge, encompassing many pieces, to try to write short posts as part of a few series. I keep coming back to two main issues:

1. What do I personally want this movement to achieve and how do I articulate that?
2. How can I and others with disabilities participate actively and convey to the larger movement our place in their ranks?

Of course, these issues overlap a great deal. A lot of what seems promising and exciting about the movement is the potential for great inclusion — of people with disabilities (PWDs) and all people. And if the movement itself — the process, in other words — includes all people, including PWDs, then the outcome will, too.

Where I feel some of the most opportunity for this is the frequent comment that those visible in the Occupy movement are also representing those of us who are less visible. This post will be part of my process of trying to address these issues.

Today, I pose the question to those in the Occupy movement who want to be inclusive and help represent us all: Is this something you really are committed to? Are you open to looking within and confronting the uncomfortable feelings that may arise when you realize that your experience is not my experience, and to really represent me, you will have to learn some ways in which I struggle and you do not? (I am aware that there are many ways others struggle, and I do not, and I am trying to open myself to those experiences, too.) And, taking that very important next step, to take on “my issues” as your own? As the movement’s own?

For today, I will just pose the questions. I hope to follow this post with several on specific aspects of inclusion/representation that concern me. I very much encourage others who want to post on this issue to comment here or email me at occupiehome at gmail dot com. I particularly welcome people whose experiences are different from mine, for while I am trying to be cognizant of my privilege and be inclusive, I know I will sometimes make mistakes and oversights.

It is the process of openness that I have so much valued in some of the aspects of the Occupy movement. I frequently hear people say, “I, a person at an encampment, represent many people who aren’t here.”

Mostly, I appreciate this very much. I appreciate the recognition that there are many of us who want to be there, but cannot. As someone whose disability causes me to be isolated and invisible to a great extent (partly due to the disabilities, themselves, and partly due to structural/societal ableism), it’s very important to me to be “counted.”

For the same reason, I often feel uncomfortable when I hear that someone is representing me. Usually, the person I hear or see saying this is a man, usually a white man, usually not a man who identifies as having a disability or being LGBTQ. Of course, I know this is not true across the board, but as a woman, a lesbian, and especially as a person with disabilities, I wonder how much these other occupiers really are representing my interests. Do they know what it’s like to have their work undervalued just because they have a voice in a higher register? Do they know what it’s like to be assumed to be “attached” to a man and have people’s interactions with them change instantly when they meet their partner?

Most of all, do they know what it’s like to live in a society where they are considered by many to be disposable — where, when someone with a disability is killed by their parent or caretaker, it’s considered justifiable, a mercy killing? Where their lives are viewed as a tragedy or a “human interest story” of inspiration? Do they know what it’s like to have everything they do be policed by a bureaucracy, which can and does include things like transportation, reading material, getting food, and moving about in one’s own house? To be stuck at home, deprived of human contact; or, the flip side of the same coin, to be stared at, asked prying questions of, and be treated like a freak? To lack access to the basic information of news, entertainment, and other aspects of communication that mean being included, safe, informed, and counted in society?

Whenever I or someone else here has written about disabilities* access, or I have talked about it recently with nondisabled people in the Occupy movement, I have been asked or told, “Well, how do we provide you access? Give us a list to work from. Tell us how to do it. You have to organize this; that’s how it works.”

In some ways, I understand this. This is an anarchist or leaderless movement. There are many details to be coordinated. It’s helpful to be given concrete information about what to do and how to do it. There might also be concerns about not coopting an agenda or strengthening the idea that people with disabilities can’t take charge of things on our own. (Thus the disability rights movement’s slogan: “Nothing about us, without us.”)

At the same time, I’m tired of telling people what to do, how to accommodate or provide access. I’m tired of referring people to the same websites, books, brochures over and over and over. I feel hurt and angry when the message I hear seems to be, “This is not my (a nondisabled person’s) problem or issue; this is your issue. Therefore, you must solve it.”

I want disability access to be a communal value — a universal value of the Occupy movement. Indeed, I see no way for the Occupy movement to truly succeed without true integration of Deaf and disabled people.

I want to hear from nondisabled Occupy people, “I am committed to being an ally. I want to learn how to create access for those who can attend in body as well as for those who cannot. I am willing to put energy into creating wheelchair access, environmental/chemical sensitivity access, blind access, Deaf access, access to people with autism, access to people with mental health disabilities and/or psychiatric survivors, access to people with developmental disabilities, access to people who are chronically or severely ill and cannot attend events in body. I want to learn how your struggle is my struggle. I want to learn how ableism is an oppressive force for all people and is harming me, even though I don’t have a disability.”

To those who say, “I am representing you,” I would like to hear from you: “I care. I am opening my heart. I am opening my mind. I am listening. And I am committed to seeking out information — reading books, watching movies, subscribing to blogs — about and by people with disabilities and the disability rights movement.”

I mean this quite literally. Please post it in the comments. Are you with us? Truly with us?

Please post and tweet this to your friends and ask them: Are they aware of the people who are not yet included fully in this movement? Do they desire to learn from us and lend strength to our voices? When I hear that desire and passion to do not just what is easy, but what is right, I will feel so much more generous and patient in offering my energy, my resources, my time to educate you. I will start making those bulleted “to do” lists of access.

*I say “disabilities access” as opposed to “disability access” because there are many different types of disabilities, requiring many different types of access for us. An ambulatory person who is hard of hearing may require CART services, an oral interpreter, or an amplification system; a wheelchair ramp will not meet his need. Someone with multiple chemical sensitivity may need a separate area away from the generator, people who smoke or wear fragrance, and wind blowing in the right direction; a sign language interpreter will not meet her needs. A sighted person with fatiguing illness who needs a quiet place to rest will find no help from a Braille printout. Access and accommodation must be attempted to meet both universal access needs and individual access needs. We are a diverse community.