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.


About Sharon Wachsler

Sharon Wachsler divides her time between writing, activism, and dog training — passions that overlap. Sharon has been a freelance writer and editor of fiction, nonfiction, and poetry for two decades, focusing primarily on lesbian erotica, disability rights and culture, humor, and service dogs and their training.
This entry was posted in Ableism, Accessibility, Disability rights, MCS/multiple chemical sensitivity and tagged , . Bookmark the permalink.

32 Responses to Corporate Control of People with Disabilities

  1. Excellent post Sharon. 🙂

    I’m actually really interested in the TTY process, as right now for calls I have to have someone on a call also be on a computer with internet. I can hear- though sometimes my processing is wonky- but I get very anxious and have a hard time talking when I’m on the phone. (I’m usually okay with there being a speakerphone at a meeting I’m at, but not calling in to that speaker phone. Anxiety often doesn’t make sense.) I know other Autistics who have TTY for similar issues, but the one I know well has extensive auditory processing issues and I don’t know if he might have gotten his privately or not. . . So, yeah. My needs parallel your needs for this area of accommodation.

    • Sharon says:

      Hey Savannah,
      You can get good, refurbished TTYs online for about $40. Try googling for refurbed TTYs or check out Craigs List and/or eBay, too. As more and more Deaf people have switched to video phones and video relay and other new technologies (texting, etc.), used and refurbed TTYs are becoming cheaper and more available. If you want an HCO phone — which allows you to hear the other person and then you type your reply — I’d suggest contacting your local ILC/CIL and asking if your state has a program for providing a free, specialized phone to a person with a disability.

      • Tara says:

        I agree with TTY’s being generally cheap enough to just buy outright. Mine was $40.

        Also, if you know or are willing to learn ASL(American Sign Language) and live in the US, you can get Videophones free, for any hearing loss (even temporary). You can also download to your computer for free (if you have a computer and internet) by using services such as Convo Relay, ZVRS, or Purple Communications. They all offer software for your computer that let you use a Videophone. You do not have to be deaf, you only need hearing loss (however temporary). So far, no medical doctors are required to get access to videophone services at this point. Hopefully that doesn’t change, since Dr visits are so expensive.

        ZVRS service generally includes HCO without asking, assuming you mute your videophone, they will happily play audio to you as well. It’s not guaranteed, and I’ve never asked, since spoken voice doesn’t really do me much good, but the hearing people I live with have noticed since I switched to ZVRS, that the other person’s voice is heard when I make calls.

      • Sharon says:

        Hi Tara,
        I have no hearing loss. I am totally hearing. I used to definitely be conversant in ASL but since I’ve lost all my friends who sign, and since most of the time I can speak now, my ASL is extremely rusty. I think it would come back to me, though, if I was able to use it.
        The different organizations I asked in my state about getting a video phone all said that I wasn’t eligible because I was hearing.
        I can’t use video relay by internet (such as Nextalk) because I don’t have a fast enough internet connection. I live in a rural area where there is no high-speed internet.
        Yes, when I looked into video phone, I found out that I’d be able to hear it, too. Until we get high-speed internet in my area, though, it’s a moot point.
        At this point, on the days I can’t speak, I’m usually so sick (in pain, trouble moving, exhausted, weak), that I’m really not up for talking anyway. It would just be useful to make very quick calls to say things like, “I’m not coming to our phone meeting today,” so I wouldn’t have to use TTY relay or email for that.
        But, I didn’t write this post seeking solutions for particular problems of mine. I don’t have a problem with not having VR access anymore. I wrote it to address larger social issues.

      • Tara says:

        I don’t know why, it won’t let me reply way down there where the conversation is. Whatever. Anyways, I live in Rural area too, but do get high speed internet.

        I didn’t have anything to say around the larger social issues you were talking about. I generally agree. I definitely agree with the overall theme of your writing. The medical establishment definitely has their way when it comes to the day to day lives of PWD’s. It doesn’t affect deaf nearly as much as other PWD’s. But many people want copies of our audiograms/etc. For instance to get a cell phone, requires we turn in a lot of paperwork to prove our deafness, which makes ZERO sense!! Plus the Deaf community often forgets about those of us that need ASL to communicate, but don’t necessarily have a large hearing loss (My hearing loss is fairly minor, but am completely mute). It’s so much easier for me to just be deaf, both in the hearing world and the Deaf world. People understand deaf, nobody understands hard of hearing or mute.

        I wish you success, and I know how frustrating it can be to have communication taken away. It’s VERY lonely!

      • Sharon says:

        Hi Tara,

        Yes, it is very lonely to lose communication. I get the impression maybe that’s your experience, too. It’s different than growing up Deaf or with a communication disability.

        You said, “It’s so much easier for me to just be deaf, both in the hearing world and the Deaf world. People understand deaf, nobody understands hard of hearing or mute.”

        Yes, I imagine that many people think either you are hard of hearing and then you can use hearing aids and that “fixes” you, or you are deaf, and then you can’t hear anything at all (neither of which are true). I know from my own experience, when I was using ASL terps, and the terps would tell them that I could hear, I just couldn’t speak (or, I would tell them that and the terp would voice it), that everyone still treated me like I was deaf. So, it was just easier to ignore that as much as possible. But, it was hard to tell how much of it was just the thing of the more disabled you appear to people (whatever their idea of “disabled” is), the more people talk to other people about you than to you. I had already experienced that before I became nonverbal, but it got much, much worse when I lost my voice and started using ASL. I thought it gave me a tiny taste of some aspects of how Deaf/HoH people are oppressed (though by no means all of them).

  2. AP33 says:

    Thank you for your priceless invaluable blogs & this article too! Thanks. Wow. [Nonsensical] our systems have been. *This directly ties into larger widespread issues of freedom of choice in healthcare & accessible legal services, as well as OWS & bigger issue of right to freedom in politics, legislation & social services from corporate influence. I’m posting from Canada. This post blog was shared via Facebook by another Canadian who has experienced severe MCE/ES. Reposting my comments & some of hers here.:

    Aren’t they then guilty of discrimination of human rights, which allows for PWD’s? It’s their responsibility, right?

    Although it took seemingly forever for (example) the TTC (Toronto Transition Commission) to comply with signs accommodating hearing & vision differently-abled people, it ultimately benefited everyone in my experience, opinion. As would the requirement of providing toxic free aids. Whoever achieved that, they or another similarly can achieve this.

    “Cdn & US laws can vary… to push the laws means someone has to be healthy enough to be able to pursue it & to afford a lawyer willing to pursue it & to be able to survive the years it [can] drag through the legal system. The barriers are humongous. I have a stack of issues that have been ongoing for years, but can’t afford the legal help & don’t have the ability to make phone calls [much], to relentlessly chase things down, when everyone says “no, not our mandate”… Legal aid has been cut back to nothing … only corporations can afford the law now.”

    I thought the community could pitch in rather than a lone person. And thought community legal services had improved. Social causes related bigger lawyers could take on the case/s perhaps pro bono, it’d be their responsibility to take collective action on the part of the community as a whole, of which I imagine there’d be *well* more than several participants. I’ve been (aiming to be) more focused on what’s possible lately. 🙂

    “Community for people with MCS is scattered all over the world, and many of us are struggling to survive. Families, workplaces, faith communities, medical practitioners… do not want to change their laundry and personal care products … [etc.] Disabled people do help each other when possible, but more often than not, it simply isn’t possible. We need the help of able bodied people.”

    Able bodied people helping each disabled person, all of them added together equals no longer one single lone person doing the work, but groups of ppl sharing in it! 🙂 (sounds good in theory, is there one nat’l or int’l group/org/website people are members of / subscribed to?) PWD’s could be prime candidates for one of the Intentional Communities / EcoVillages / Transition Towns (tailor made unique for a proper toxic free fit of course).

    One network of connected PWDs would help. And including all the related issues (’cause truly they’re healthier & beneficial for all of us) in the 99% related demands crucial, as well as in the key forming points of every movement & community incl Worldshift Movement & Thrive, Transition Towns, Eco Villages, Intentional Communities, etc.

    “Until you have spent some time banging into the systemic obstacles that exist, it’s impossible to imagine… May I suggest you [& others] leave a comment at the blog too, so someone with [higher level of physical functioning] can respond in a way that some others may not be able to.”

    • Sharon says:

      Hi AP33, I am loving your group/communal reply to this post, and the conversation it triggered! Please know, and tell your comrades, that I welcome posts from you — or anyone else — to discuss these topics you are bringing up in greater depth, or to address other topics related to the 99 percent movement as they relate to disability or to anything involving occupying from home. Anyone who’s interested can post in the comments or email occupiehome at gmail dot com. Hmm, I think I will also set up a contact form in the “About” section here, to make it easier for people. For example, I would really be interested in hearing about issues of concern to Canadians with disabilities. I know we share many similar concerns — such as people with disabilities (including children) being murdered by their carers (including their parents), and issues of public access and accommodation, and the usual attitudinal barriers, but I’d be interested in reading about other topics, such as the ones you mention, or also going into more detail on what you raised or what I raised or really anything that feels alive for you.
      I especially like that you brought up the issue of group/communal action/responsibility, because I think too often — most of the time — issues of access, ableism, accommodation, etc, are left to the individual with the disability facing the issue, and they/we are usually the least able to confront it, for the reasons you mentioned — we are too sick or overwhelmed with trying to survive and battling the ableist systems that consume our lives. Also, because PWDs are NOT taken seriously and our issues not seen for the political/social issues that they are, it is not seen as something that others — w/out disabilities — can and should take on as THEIR cause, that it is worth rallying around for them.
      This, IMO, is one of the biggest challenges we face — that only PWDs and our close allies (family members and friends, usually) care about fighting ableism. And for change to occur, we need more allies to step up to the plate and take action alongside us.

  3. Mark Martino says:

    Thank you; I posted a link on my Facebook page and will spread it on some others. Almost no one gets disability itself, much less what loss-of-control it represents in our lives, the philosophical and social problems it presents…thanks. Peace.

  4. David W. Griffiths says:

    Thank you, thank you, thank you for beginning this discussion! I’ve only read about a third of your post, and I can tell that I’m going to be posting several, very lengthy responses. For now, I’ll just say I’ve personally been alienated by the Occupy movement, because they seem to love using us as examples of “how bad things are” and they love talking at us about what they think would make things better for us, but as soon as I start talking about my own experiences of oppression at the hands of both corporate and government entities (and nondisabled individuals, by the way), or if any other PWD’s try to tell their stories, the occupiers start coming up with reasons why it’s not appropriate for us to speak for ourselves. As far as I’m concerned, the only thing that these people are occupying is the philosophical territory where many of us have lived our entire lives, but they deny even the possibility that we might have knowledge or insight based on decades of experience that they might actually learn from. Or, to put it more simply, many in the Occupy movement seem to be stuck on the idea of needing to “help” PWD’s, but they won’t let us help them. Thank you again, and I’ll be back soon with more.

    Those who walk on foot make progress by steps
    We who walk on wheels make progress by revolutions
    The 5th World is rising

    • Sharon says:

      Thank you so much for comment! This is a very useful perspective for me because I am not able to go to any Occupy events in person, and with very few exceptions, all my networking around Occupy has been with other PWDs, so I don’t have a clear sense of what’s going on “on the ground.” Although when I do hear, it sounds very much like “business as usual” within progressive/left movements where PWDs are seen as useful for examples/points to be made, and for scoring brownie points for inclusivity, but that actually working with us and toward our goals is sadly lacking.
      By all means, feel free to post comments. I think what you wrote above is already almost a blog post! Would you consider allowing me to use what you’ve written so far, and what you will write, and post it on #OccupyatHome so that it will reach more people?

      • David W. Griffiths says:

        That sounds great! I’ve been thinking about starting a blog of my own. Maybe writing some things for #OccupyatHome will provide the motivation I’ve been needing. Quite frankly, one of the biggest barriers has been the feeling that there just isn’t an audience for my message. I’ve been laboring under the impression that no one else is even thinking about disability in the context of the Occupy movement. Thank you for proving me wrong. It’s good to know that someone actually wants to hear what I have to say. I’ll post more comments tomorrow. I’m curious to see what you think. Maybe the Rising of the 5th World is closer than I thought.

  5. Sharon says:

    Hi David,
    Oh, for sure, there are many people with disabilities involved in Occupy. I hope to get the Occupy-themed disability blog carnival up in a day or two, and you will see there are lots of posts about it, though of course, there are many I don’t know about. But meanwhile, here is a post that gives links and blurbs to all the Deaf and disability Occupy groups I know about:
    FYI, I just updated the “About” page here, so you might find that useful because it discusses how to get involved and seeking more contributing writers.

  6. Pingback: Disability & Occupy: Disability Blog Carnival #79 « After Gadget

  7. Pingback: Corporate Control of People with Disabilities | #OccupyOakland Media

  8. I couldn’t even comment on this wonderful post on Occupy Seattle because they have me blocked. I am facing death threats and rape threats. No one cares.

    • Sharon says:

      Hi Jana,
      I care. Some of my favorite bloggers, usually women or genderqueer people, receive death and rape threats, and I find it sad and frightening. I fear it will happen to me. I imagine in your place I’d feel terrified and frustrated. I feel such sadness and fear whenever I hear of people online receiving rape or death threats. I moderate all comments, so it is certainly my intention that no form of personal attack or threat appear here.
      There is a resource you might find useful. It is called Occupy Voice, and it is a phone resource staffed by people who are trained in nonviolent communication (NVC), also known as compassionate communication, for anyone affected in any way by the Occupy movement (whether pro, con, uncertain, etc.). It is a great place to get empathy and be heard, and can also be a good resource for dealingn with conflict among Occupiers. I wrote a post on it here: OccupyVoice: A Resource for Anyone Affected by the Occupy Movement.
      There is also now an OccupyVoice blog.

    • brilliantmindbrokenbody says:

      I care. No one should face death threats or rape threats. No one. Not the least of us, not the worst of us, not the hardest to understand or the hardest to feel compassion for. To receive that kind of treatment for being different is such a kick in the teeth. I can only guess at why you’re receiving this treatment (and my guess is on the last – just being different), but on some level it doesn’t matter why people are acting that way. It’s still deeply wrong.

      You are worth more than that. I value you more than that, and I believe everyone else should as well.


  9. Wow What a Blog that and Comments are. My Mom is Disabled with Severe Arthritis. Lots of pain and in bed Needing care givers to help her do anything. Fortunatly My wife My Sister and My Dad are her caregivers right now. I hate to see if that were to change what might happen. I can relate to every one that has comented and you as well Sharon. I also have a Friend Who lost a leg in a work related accident. Jumping through hoops and all kinds of paper work Just to get The basic things you need is a very long and hard Prosses to go through. I my self am going to try to get on Dissability for my Arthritis after I see my DR. in the next few Months. I am having Difficultiys doing the things I have always done Hurts more than it used to.
    I do not know much of the occupy thing did not have any interest in it. bunch of Bunck To me. What was it to proove?
    I live in Washington State Here we have The Copes Program for the Elderly.
    I found this on facebook from a friend of mine I will Share this Shortly.
    Thanks Have a Great Day!

    • Sharon says:

      Hi Renny,
      Thank you for commenting. It sounds like you are dealing with quite a lot.
      Occupy has given me a lot of hope. I find it very exciting. For example, I think I would not have written this post — and it certainly would not have gotten the attention it has — without the Occupy movement. IMO, the movement’s most important achievement has been to raise awareness about the corporate ownership of America. A lot of people who would not previously have read a disability rights post, I think, read this one because it was framed within the Occupy movement’s sphere of interest and understanding.
      If you’d like to read more about diverse perspectives and experiences of people with different disabilities and Occupy, Disability & Occupy: Disability Blog Carnival #79.

  10. Snoopy says:

    *** 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.****

    Girl you hit the nail on the head with that one.. That is completely my experience. I dont care to get into all the details seeing how it is almost 3am and i need my sleep.

    • Sharon says:

      Thank you for your comment. I feel very sad hearing that you, like so many others, are facing this situation. Someone in my life is coming off of psychotropic meds after two decades of being on them, and it takes a LOT of other resources and support to do, which the medical community (which can almost not be separated from the insurance industry and other corporate industries anymore) almost never provides help with, even when they want to; they don’t have the training or the institutional support. I remember a few years ago hearing that Oregon’s state Medicaid program was cutting off virtually all services to people with mental health diagnoses. Then it started spreading to other states. It’s a recipe for tragedy on an enormous scale.

  11. Margo Menconi says:

    I’m also disabled but while I have had some problems with various authorities, right now I’m dealing with family issues. Mom committed suicide in April, and while I’ve seen her a fair amount, I haven’t lived in the same city with her for years, so I’ve learned some things since her death about the family that mostly confirms and fills in some blanks about the family.

    Dad believed in people pulling themselves up by the bootstraps, but mom had a lot of emotional problems, which were especially bad the last 10-15 years and I think that dad and then, after his death 5 years ago, my brother living nearby who ended out taking on the day-in-day out responsibility for mom verbally and emotionally abused her. Things were set up so that after dad’s death I had virtually no responsibility for mom and could only do things that fit in with my brothers’ efforts on her behalf. In other words, anything I did for her pretty much had to meet their approval. So I went behind their backs to call people near by to check on her and when I became concerned about the anger of my brother living near her I called a few strategic people to watch for tell-tale signs of possible emotional and verbal abuse, but no one believed me until after her suicide. It looks like he has anger pent up from life and vent it out on mom and after mom’s death a cousin became a target. No one else knew he had this anger, but I knew he’d had this anger from his youth and worked hard to try to control it over the years… so he was working long hours, became frustrated, and it came back again.

    So now it’s confirmed that both of my brothers are abusive, because the other brother who has a son with muscular dystrophy (and also another healthy son) is controlling and physically abusive too.

    I’m single and 51, but I don’t want either one of my brothers to take care of me in my old age. Can you blame me? I’m stuck at home a lot too like a lot of disabled people, so it’s hard to have much of a social life. I don’t have a lot of energy so I have to be selective on what I do too, and I have so many health-related activities that there is only a fairly small window of time available for social activity without compromising my health maintenance.

    So, while I have had times where getting access to the resources I needed and deserved was very difficult and stymied, right now family attitude and values are the biggest issue for me, resulting in me having to chose to go completely on my own with no back up emergency support or risk being abused like mom and my nephews.

    • Sharon says:

      Hi Margo,
      I’m so sorry to hear about the loss of your mother. I imagine you’re experiencing a lot of grief and a lot of other, possibly confused, emotions in the wake of all you’ve learned and endured of late. I think assuming that family members will care for ill or disabled relatives is a serious problem, and situations like yours are one of the reasons why. There was a period of time when I required caretaking assistance from my partner and from my mother, and both times were extremely difficult. It almost resulted in the end of my relationship. Now I have hired personal care assistants (the PAS program I discussed in the post), and that is so much better. Having an employer/employee relationship does not get in the way with familial relationships. Also, it’s much harder to disentangle yourself from an abusive domestic situation (be they siblings, spouses, parents, children, or lovers) than it is from a PCA situation (though abuse can occur there, too). I think this is one of the areas where corporate and public interests do interfere with PWD autonomy and safety. For example, in my state, if you are married, or even if you have a roommate, you lose a lot of PAS hours because the assumption is that the person you live with will provide you care. Private health insurance companies as well as state-regulated programs (often now privatized and run like HMOs) end up with this power.
      Margo, are you familiar with independent living centers? If you are not, they are organizations that provide information and referral, and usually other resources including advocacy and administering the personal assistance program, for their areas. If you contact your ILC, you might find that you are eligible for an emergency button/call for help, and/or homemaker or personal care services and/or other services that would not mean you’d have to rely on your abusive family.

  12. Mary-Anne Wolf says:

    My partner is para and we have faced similar issues to you, not as bad.

    Have you considered Skype as a solution to your telephone problems?
    This might change the set of equipment available.


  13. brilliantmindbrokenbody says:

    It is sad how often in our world, one has to be lucky to live decently. I have been. The doctors I’ve had since I got sick have almost uniformly been willing to work with me, especially my GPs, who in so many ways are the most vital. The first aide assigned to me by the carer services provider has been great (caring, friendly, efficient, and never any signals of thinking of me as less than a person – what more can you ask for in an aide?). My fiance carries so much of the weight of taking care of me, and does it with great caring and very little complaint. My service dog school has been about 95% helpful (I did have to go to events where I knew it was going to be too hot for me, but that WAS before my diagnosis with POTS, so things might be different now. Otherwise, they’ve been awesome). I am in the odd position of being on public health care (state Medicaid) that is provided via an HMO; thankfully, it is low cost to me and pretty inclusive. I just have to occasionally argue about medical equipment and medications – apparently, I am the ONLY patient my pain management center has on Medicaid getting one of my medications, and they don’t really know how I got it when no one else has. I think I just nag enough people often enough at both doctors’ offices and the HMO to get what I need – but being able to do that is definitely a privilege, and I don’t think the system should be built so that we have to do that! I know part of why I am as well taken care of as I am is the simple fact that I live in a major city that has pretty good services.

    It frustrates me when I realize how awful my life would be – how awful the lives of so many other like me are – without all of the pieces falling into place like mine have.

    The medicate-or-not issue is so controversial in the mental health circles. On the one hand, it’s genuinely helpful for many people, like myself (I probably wouldn’t be here right now if it wasn’t for medication over the years, it plays a big part in preventing me from harming myself). On the other hand, it is thrust on almost everyone who has mental illness by the medical industry and by society at large, regardless of whether it is effective or worth the drawbacks. And expecting anything but medication, well, that’s a fool’s hope. I have a therapist through my school who by their rules should not still be treating me – they are supposed to be available only short-term and I’ve seen her off and on for I guess just over 4 years now. If I didn’t have her, I’d be scrambling for resources. My fiance had depression issues in the summer and fall of 2010, after his uncle committed suicide. He had no insurance at the time, so we had to find somewhere that does sliding-scale work (possible in a big city like ours; much harder if we didn’t live in a major city with lots of colleges offering counseling degrees). Even the sliding-scale places, they’re there for the crisis, not for the long haul. I shudder to think what it would be like if he wasn’t relatively stable, as he didn’t have insurance from the middle of 2010 to September of 2011. Even now, I don’t know what his mental health treatment benefits look like; his insurance isn’t as good as mine.

    Wow. That’s turning into a big wandering piece of something. What I’m trying to say is that the services that are necessary for life and for quality of life are all too hard to get, and all too hard to keep.


  14. jayjay says:

    Excellent post. This country is beyond repair I believe. When the weakest and sickest are treated the worse, what is the point of even fighting for such a society to continue?

    I’m in that rut of where I’m too sick to work, but since I am married and he earns a measly income we both barely survive on (and depend on food banks and my grandma sometimes in bigger pinches), I am unworthy of the title of being disabled since it is a ‘needs based program’. I honestly could make do without the money, I just need the Medicaid. But I can’t get it. So I sit at home dying of liver disease, because our society doesn’t give a fuck about anyone and life is not worth saving if it isn’t unborn or under 18 or over 64. I’ve considered suicide but I’m so terrified of failing and ending up more disabled or with more debt I can’t convince myself to do it just yet. Guess I haven’t taken enough psych meds. Oh wait, I did and it caused my liver problems. Thanks, America.

    • jayjay,

      I read your comment with a heavy heart. The level of anger, frustration and desperation, of not getting the help you need — and having your illness caused by the medical system in the first place — is very painful. And very familiar. But that never makes it any better to hear. I do so wish that you had Medicare and Medicaid. Some people with disabilities divorce just so they can get on SSI and Medicaid.

      I do give a fuck about you. I hope you find the supports you need. I wish there was something more tangible I could offer.

  15. Mary-Anne Wolf says:

    Jayjay, I believe in Massachusetts people can buy into MassHealth if they earn too much to get it for free. I don’t know whether your spouse and you can consider moving, but it might get you better medical care.

  16. I’m 53 years old. I got Medicaid in Arkansas by finding a Social Security Administration advocate that helped me get my SSI (a need-based program). Different states have different eligibility requirements for Medicaid, even though the SSA requirements for SSI are the same because it’s administered by the federal government. Ask around for a good one in order to avoid the creepy ones. (Oddly, mine did such a bad* job that he may have gotten me my aid faster* than someone who was competent. I was lucky to have a Administrative Judge who had a clue.) Keep checking online for advocates and support groups who can recommend advocates who can find and help you get programs. Even something like Brain Injury Association has MCS awareness, now, and they may be able to help. It’s lots* better than it was, even though it still sucks, sometimes. can recommend counselors who can advocate in some ways for programs and getting Medicaide. It’s out there, it’s just really overwhelming to try to find. I hope this helps. I wonder if Prepaid Legal service attorneys sending warning letters to people up that you are trying to deal with, reminding them of their vulnerability to lawsuits should you decide to take them to court for discrimination, etc. It may be Federal Fraud for them to act this way. The ADA MCS Techs at the Department of Justice were hard to find, but they have been extremely helpful in convincing people to do the jobs we’re* paying* them* for. They serve US* and I never* let them forget it. The laws are* out there, they’re in place. We just have to survive while we sue, right? I’ve had trouble getting MCS accessibility in court situations, but I’m working on that with Prepaid Legal. Hopefully, they’ll be part of the solution, not part of the problem. I’m hoping the best for you. It’s hard keeping sanity in an insane world. National Alliance for the Mentally Ill (nationwide) has advocated for me, and, they’re breaking away from the big pharmaceutical companies. They’re changing language and really making a difference, here in AR. I hope some of this helps.

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