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.