Lies, Lies & More Lies
by Naja Sorella (US)
published in Sinister Wisdom #45, Lesbians and Class, Winter 1991/1992
Reprinted with permission, May 2008,
Intro: This article aptly reveals and describes the misery and torment that people with disabilities, especially invisible disabilities, must endure because there currenlty is no universial Guaranteed Livable Income. This is a US article, but conditions for people with disabilities are similar in Canada (and probably in other countries as well), especially the scrutiny, judgements, and misunderstanding by non-disabled people towards people with disabilities. This of course increases stress which exacerbates any medical conditions that people have.
Thank you to JG for transcribing this so we could post it on our website. Any typos are the fault of LIFE and not the author or publisher.
Being disabled, living on SSI* and Medi-Cal, is exhausting to say the least. I'm worn out with everyday survival. The attitudes of some Lesbians towards those of us who're poor, on government assistance programs, and/or disabled make it that much harder. There're so many societal lies and myths about those of us on assistance programs, and Lesbians seem to have swallowed them whole.
( *SSI is Supplemental Security Income, a federal program for poor disabled people, and Medi-Cal is a Canada state medical program for poor womyn with children and disabled people officially on SSI.)
One of the basic attitudes that influences how America in general, and Lesbians specifically, treat us is that work equals worth. How much a person works, the type of work they do, and how much they're paid for it, determines their value. Along with this goes the Great American Myth: The USA is the land of plenty and there's equal opportunity for anyone to be successful if only they work hard enough.
Not only is this classist, but ablest (and racist, and ageist, etc.). Along with the Great American Myth comes the lie that the government is taking care of all the poor, disabled, and old people that need it. The government has plenty of assistance programs for everyone who really needs it and even takes care of a lot of people who don't really need it but are getting free rides off the government. There are plenty of Lesbians who believe these myths and lies.
The Myth of "One Simple Phone Call" or What's Taking You So Long?
Lesbians, along with everyone else, believe that the government is waiting with open arms to give you assistance, and all you need to do is make "one simple phone call," or "just apply," and presto! you're on Welfare, Food Stamps, SSI, etc. I fought for four years before I finally got SSI. Lesbians kept asking why I wasn't on it yet, and when I'd explain the difficulties, they were suspicious. Again, along with the rest of society, some Lesbians believe that if you're not getting government help, there must be something personally wrong with you. After all, the government takes care of everyone who really needs it. Maybe you're not as poor as you claim, or as disabled. Or perhaps you didn't really try hard enough, or you didn't do it right. Or the best one of all, you don't even want to help yourself, and you're so lazy you didn't even bother to apply in the first place. If you'd really applied like you claim, then you'd have it by now.
The truth about any assistance program is that it's damned hard to get on. It's almost a 24-hour-a-day job, and requires incredible health and stamina (which we don't have) to do all the work involved. I've lived on Welfare, Food Stamps, SSI and Medi-Cal. Mostly I'll refer to SSI and Medi-Cal, since I've dealt with them longer and am more familiar with them.
It's estimated that 30% of the disabled people nationwide that are eligible for SSI actually get it. SSI, like other assistance programs, sets the criteria so as to eliminate most applicants. There are very few disabilities and chronic illnesses that are in the codebook SSI uses to determine who gets SSI. Basically, they want you either totally paralyzed or dead in six months. If your illness or disability isn't in their codebook, you're out of luck. And from my experience, I tell you, that codebook ain't worth shit. My experience, and that of most Lesbians who try to get SSI for something not listed in the codebook, is that we fight them for years before finally getting accepted. And not all of us win. I've heard of middle-class Lesbians that used family connections (a family friend who's a lawyer, psychiatrist, politician, etc.) that got them on SSI quickly, but I don't know of any poor/working-class Lesbians who've had this kind of privilege.
If you're sick/disabled and apply for any kind of assistance, you gotta have a doctor fill out forms that verify you're not faking. If you can't afford to see a doctor, you don't get the forms signed. Usually, many, many visits to different doctors, mostly high-priced specialists, and expensive tests are required before a diagnosis is found. And this can take years. And until you have an official western medical diagnosis, don't even bother hoping to find yourself in SSI's code book.
Let's say you're a poor Lesbian and can't afford all those fancy doctors. You end up at community clinics or community hospitals, which are underfunded and offer minimal care. The misogyny inherent in traditional western medicine is reflected in the lack of knowledge and research about womyn's diseases, and the tendency of doctors to not believe womyn's physical complaints and misdiagnose them or, more commonly, tell them it's all in their heads. Clinics and county health programs don't provide any alternative health care such as acupuncture, homeopathy, chiropractic, herbs, etc. Instead, they offer surgery (which can be life-threatening) and drugs (many are highly toxic). Once you refuse these treatments, your refusal goes into your charts, and the clinic or hospital is no longer obliged to offer you any further services.
Now your goose is really cooked! When you apply for county, state or federal assistance, they get your medical charts and can deny you assistance because you refused a treatment that supposedly would make you healthy/able-bodied, and able to work again. The attitude is that you refused the surgery and/or drugs because you don't really wanna get better and go back to work, you just wanna freeload off the government.
When you're rejected by assistance programs, you can appeal, but appeals take years, and some kinda lawyer to help you figure out how to do the damn appeal. Who can afford that? Meanwhile, you got no money to live on. So you force your butt to work, while the appeals slowly grind their way through the bureaucracy, but then, they consider you able-bodied because you worked. If you're totally unable to work due to illness/disability, and are fortunate enough to have a family member or friend to leave with while you wait for Welfare or SSI, then you're disqualified for the assistance because you have someone who can support you. Of course, if you're not fortunate enough to have some place to stay while you wait, your butt's still in trouble, because you can't get government assistance without a street address!
The myth of making "one simple phone call" or putting in one application for assistance is a joke. Anyone who's had to deal with the system knows better than that. When I went to Welfare, I got up at five in the morning, took several buses for an hour or more, to arrive as early as possible before the office opened at eight. If you arrive at eight, too bad for you. There'll be 70 to 100 people in line before you. They go in first, get their number first, and if you're number 106, you might as well take the bus back home.
The first time I went, I didn't know this. I sat from eight in the morning until four in the afternoon in a smoke-filled room, sick as a dog, and waited and waited and waited. At the end of all that waiting, I didn't even get to fill out an application. I was too ill to make it back the next day, so weeks later when I could deal with the buses, smoke, and sitting all day, I got there at seven. I did get my application in that day, but that wasn't the end of that. Over the next month or two, I went back many more times. On top of all that, I had to sign a form saying I'd pay the Welfare back whenever I got any money. When I finally got SSI in 1988, every dime Welfare had given me was automatically taken out of my retroactive SSI payments. So much for a free ride!
The Disappearing File Act
It's not uncommon for applications and complete files to be lost. About two years into appealing SSI, I discovered they'd lost my file. They'd never heard of me, had no file anywhere on me, and I had to start over. Workers will also say they've lost your file when they don't wanna get up and go look for it. It's also not uncommon for workers to give you wrong information, if you're lucky enough to get ahold of them at all! (I've left messages for weeks before getting my worker.) Workers will tell you to do such and such or call such and such department, and when you do that, the workers at such and such a department say no, that's not what you're supposed to do, you're supposed to do this and that instead. This game can go on for months.
The one I hate the most is when I call person and/or department A who tells me to call person and/or department B, and when I call B, they tell me they're the wrong person/department. I call A back, and of course, A is emphatic that B is the right person/department. And they both insist there's nothing more they can do for me; after all, it's not their department. This can also go on for months.
On top of all this, workers out and out lie. I've been told certain information by a worker, who'll later tell me she/he didn't say that at all. Or they'll promise to do a procedure that's vital to your application, or your continuation of a service; then they either forget to do it, or refuse to do it, and deny they promised to do it in the first place.
The worker is always right; they're never, never wrong. It's us who eat shit. Confronting a worker on her/his lying and/or incompetence (which is rampant in assistance programs) is very dangerous. They have all the power. You rub your worker the wrong way, and forget the service or program you've applied for or are already on. Workers make up their own rules. It may not be legal, but they do it. If they don't like something about you, or if you haven't properly groveled or kissed ass enough, watch out!
In 1985, I was on Welfare when my father suddenly keeled over one night and died. My sister bought me a plane ticket, and I left Canada to be with my family in Denver. I asked my lover to call my worker to cancel an appointment I had with her the following week, and to also tell her I'd left due to a death in the family. The worker informed my lover that unless I was back in three days, she was terminating my welfare.
In the middle of a family crisis, I had to make days' worth of long distance calls to straighten this mess out. After realizing my worker wasn't gonna budge on this three-day business, I asked her for her supervisor's name and number. She flat out refused. Clearly against the rules, but she was making up her own rules. My lover had to get a Legal Aid Worker to obtain the supervisor's name and number. The supervisor allowed me to stay out of state for three weeks (the legal amount of time), but I had to furnish proof that my father had really died when I returned to Canada. As well, my worker continuously punished me for the rest of the time I was on Welfare, for daring to question her power and authority.
"The Community's There For You!"
Besides believing the lie that the government takes care of all who need it, some Lesbians also believe that the Lesbian community is taking care of all poor and/or disabled Lesbians. Over the years, both my lover and I've been told (usually, but not always, by middle-class, white, able-bodied Lesbians) "the community will do that for you."
Among other illnesses and disabilities, I'm Environmentally Ill (E.I.). Living in the Bay area is extremely toxic, and we want to move to a less toxic, rural area. Some Lesbians are not only shocked, but angry to discover I'm still in the Bay area 7 years later. They demand to know why I haven't moved and when my lover and I try to explain the complications, they'll emphatically state, "Well ... the community will help you move!" As if there's offers to help me move pouring in every day, and I'm turning them down!
Another example of thanks was when a Lesbian came to my home to give me health care. She saw my paintings on the wall and asked if I'd been exhibiting and/or selling them. I briefly described some of the difficulties for me as a homebound, mostly bedbound womon (with only a couple of functional hours a day) living off SSI and paying almost half of it for rent. Again, "Well ... the community will help you get your paintings out in the world. There's plenty of Lesbians who'd love your art and want to help." So I told her to feel free to give my name and number to all those Lesbians, and now, over 9 months later, I haven't gotten one call.
There's all kinds of attitudes underlying those comments. First is the assumption that just like the government, the Lesbian community is taking care of everyone who needs help. They're just sitting on our doorsteps waiting for us to open the door and invite them in. I asked my lover, "Who do you think these Dykes are talking about when they tell us 'the community' will do this or that for me?" She said, "These are all middle- and upper-class Dykes and they're talking about the community they have around them, other middle- and upper-class Lesbians."
If this is true, if their definition of "the community" refers only to Dykes with physical and financial resources, then I don't know these Lesbians. The community that continues to be generous and supportive of me after these years of being sick and poor is a small number of Lesbians who're mostly poor and disabled themselves. This means they have fewer physical and financial resources to share. This is my community.
There are small pockets of Dykes who're devoted to disabled and/or poor Lesbians, but the truth is, there isn't much of "the community" available to us. Valuable Lesbian energy has been lost to men with AIDS. Lesbian who might've given free health care, massages, housecleaning, personal and/or political energy to poor disabled Dykes en years ago, now give it to men with AIDS instead.
Another attitude that keeps some Lesbians from sharing their resources is this prosperity consciousness bullshit. It comes in many forms: "willingness to manifest your life," "just go for it," "you'd be healthy/have money if you really wanted to," "your negative thinking prevents you from having prosperity," "you create your own reality," and on and on ad nauseam.
Many years ago, a Lesbian was giving me extremely low-fee therapy in my home. That she was willing to do that was great. About a year into it, she told me she couldn't work with me anymore because I wasn't "willing to manifest my life." What she based this decision on was the fact that I was often too ill to make to phone calls necessary to get information about the assistance programs I wanted to apply for. My physical inability to make phone calls was chalked up to a lack of "willingness to manifest my life." Of course, she never offered to make some of those phone calls for me.
Both my lover and I've had Dykes tell us to "just go for it," after we've explained how no money and my incredibly complicated illnesses and disabilities are the reasons we haven't moved yet. It's easy to "just go for it" when you have wealth and class privilege. Class privilege not only gives someone the money to "just go for it," but the know-how and, perhaps more importantly, valuable personal and business contacts.
Class privilege also determines which Lesbians are more likely to have "the community" (middle- and upper-class Dykes) available to them. Middle- and upper-class Dykes know more middle- and upper-class Dykes than do us poor/working-class Dykes. These Lesbians have beneficial work contacts. Those of us who got shit jobs, or no jobs at all, don't have the same number of class-privileged friends in our lives. For Dykes like myself who're mostly homebound by illness/disability, our contacts with "the community" are fewer as the years go by. The number of middle-class Lesbians I knew 8 years ago when I was first becoming disabled by my illnesses, and the number of them in my life now, has decreased dramatically.
A few years ago, a close friend of mind got cancer. Being a professional, she had tons of professional friends and contacts. The help and support she received on all levels was very different than what my current group of mostly poor, ill/disabled Dykes are able to give me. Some middle-class Lesbians who'd known of me for years, but never offered any support, donated time and energy though some of them hadn't known her previously. My friend and I talked about the different in how "the community" was there for her versus for me, and we acknowledged that cancer is a more recognized illness than the types of immune system illnesses I have. But we never discussed how class played a role as well. That was scarier for me.
"Well ... Then, What Do You Do All Day?"
Like mainstream society, many Lesbians believe the lie that people on assistance programs sit around eating bonbons, watching soap operas, and painting their nails. They think that once we're on assistance, it takes care of all our needs, and we don't have anything to do with all our "leisure" time. I can't begin to count how many times Dykes have asked me what I do all day, since I don't "work." I must admit that all those years I busted my but to get SSI, I thought that once I got it, I could relax a little, not have to work so hard every day fighting the bureaucracy. The truth is, once on an assistance program, you work as hard to keep it as you did to get it in the first place.
Services and programs that are supposed to be available to you once you're on SSI and Medi-Cal don't come automatically. Yes, I qualify for Section 8 housing (federal housing subsidy for poor people who are disabled, old or got kids), but six years after applying and being approved, I still don't get it. Even though I've been approved for it, I do continually work to make sure they don't lose my file again for the umpteenth time, that I'm still on the list (it's amazing how one minute your name's on the list and the next minute it just up and walked off the page), finding out new information and rules, etc., etc. When Lesbians demand to know why I don't have Section 8 after all these years, and I explain it to them, they give me that look that says, "I don't believe you; you must not be doing it right." After all, if I was doing it right, I'd have Section 8 by now.
My various illnesses/disabilities give me an average of two hours of functional time a day. Dealing with my illness itself, as well as trying to obtain medical care I need, is something I work at every single day. Some Dykes don't believe me, saying that I have Medi-Cal and it pays for everything. Nothing could be further from the truth. Medi-Cal is funded by the state and each year the state makes cuts in Medi-Cal funding. Very few doctors take Medi-Cal, as they pay so low that doctors can't recover the money it takes to pay their office workers to fill out the Medi-Cal forms. Also, Medi-Cal has a bad track record of not paying health providers, even when they do send in piles of forms. Mostly, Medi-Cal covers western medicine, but there are many types of doctors, tests, drugs, surgeries and other treatments they won't cover.
I struggled with Medi-Cal for several years to get them to pay for my oxygen (which they're supposed to cover). They maintained EI wasn't a valid reason for oxygen. I need oxygen due to my EI, and they maintained EI wasn't a valid reason for oxygen. They wouldn't pay, the oxygen company wanted to cut me off, and I put countless hours and months into dealing with the oxygen company, Medi-Cal and a Legal Aid worker. It was another situation where I'd do weeks of work and think I'd resolved something, only to find out it'd gotten screwed up one way or another.
In the end, I was lucky. Medi-Cal approved the oxygen two years into the battle, because they messed up the paperwork and didn't want to admit it in court. It took four other womyn with EI another two years to win their oxygen case in court.
The amount of relief I felt over no longer worrying about having the funding for my oxygen cut off, and no longer fighting the daily battle with Medi-Cal over oxygen, is hard to put into words. As well, the time I'd spent fighting them was now freed up to fight for some other service I needed.
Medi-Cal will cover a total of two alternative health treatments, such as acupuncture, homeopathy, chiropractic, etc., a month. Again, the fee they pay alternative health care providers is so low, hardly anyone takes Medi-Cal. For those of us with chronic illnesses, two treatments a month often aren't enough. Many of us need treatments weekly, and sometimes 2-3 times a week. Both my lover and I spend a lot of time contacting alternative health providers, asking how low their fees are, if they make home calls, and if they're willing to use safe products (personal care products that won't make me ill) in order to come into my home. Many months of calls go into finding the one or two health providers that are willing to do it.
Once you've done the months or years of work to obtain a Medi-Cal service, you're not home free yet. I've been getting in-home intravenous (IV) gamma globulin for two years now. It took an unbelievable amount of work to set up. After two years of doing it, you'd think things would go smoothly. Guess again.
There's always a glitch somewhere. I call in orders for new gamma globulin, IV needles, tubing, etc. The supplies are sent to the company the in-home nurse works for; she picks them up there and brings them here. We're told the supplies are there, and she goes to pick them up on the day of my infusion, and of course, no supplies. I spend the next four hours making desperate phone calls. Better yet, I'm told I never ordered any supplies, despite the fact I've written down the day I ordered them and who I talked to. Of course, as the client, I'm always wrong. Like with case workers, don't challenge them, don't confront them on their incompetence or lying, if you want to keep your service.
Another glitch; the nurse doesn't show up, she's sick, her kid's sick, or she forgot she was supposed to come, etc. More hours and days of phone calls to get another nurse. Every time my treatment is late, it takes two months to catch up on the benefits it gives me. Late treatments only happen 3-4 times a year, but times two months each time, that's over half the year.
Recently, my lover and I decided to ask the company to train her to put the IV needle in. We felt this would give us more independence, cut down on late treatments, and remove the risk of reacting to toxic nurses. In their quarterly magazine, the company bragged about training patients or their family members to self-infuse. So we called them up and said we wanted to do it. Suddenly, nobody has heard of training for self-infusion. They don't offer it. We must be mixed up; it's the company they subcontract to (for the in-home nurses) that does the training. So we call the company that hires the nurses and they say no, we don't do it. Back and forth and back and forth. Weeks later I think I've finally got it all set up, and again, they don't remember talking to me and promising to set the training up.
What else do we do with all our "leisure time"? Ask just about any chronically ill/disabled Dyke and she'll tell you she learns more about her illness/disability, new doctors, tests, and treatments from her similarly ill friends than she does from her doctor. Instead of eating bonbons and planning our next cruise, we're constantly searching out new information, asking other womyn if such and such a product helped or not, what they've done for this or that problem, etc. This is a full time job. When my brain works, I read anything I can get about the various illnesses I have.
As if there wasn't enough to do, there's the ever continual search for attendants. In Home Support (IHSS) is the Alameda County program that supplies money for attendants. If you're lucky enough to get it. It's another one of those programs where funding is continually cut. Fewer and fewer people receive it, and once you do get it, you fight every year to keep the number of hours they've given you, if you're not outright cut off altogether.
Once you're on IHSS, you don't sit back, watch TV, and pick lint from between your toes. Finding an attendant is a perpetual pain in the ass! IHSS pays minimum wage for attendants. It's hard work, low pay and no sick days off or holidays. It's the type of work colleague students do, people who're in between jobs, and people in the country illegally. In other words, transient work. No one goes into attendant work as a career. A few womyn are lucky enough to keep attendants a year or two at a time, but most of us lose them every month or so.
Being as E.I. as I am, I need attendants willing to give up their toxic personal care products and use only safe products. This is extremely difficult. Most people, even Dykes, are attached to their hair permanents, dyes, mousses, gels, etc., or to their makeup, hand lotion, deodorant, fabric softener, incense, and so on.
I keep ads in the local papers for attendants and do phone interviews every week. Sometimes every day. Yet, the only person I've been able to keep as an attendant is my lover. Besides constantly interviewing possible attendants, I spent hours making up lists of things for my lover to do when she works for me.
Welfare Bums, Freeloaders, Scammers, and Taking a Free Ride at Taxpayers' Expense
None of the assistance programs, whether it's welfare, SSI, IHSS, AFDC, Food Stamps, etc., provide the bare subsistence needs for poor and/or disabled people. No program begins to bring recipients up to Government stated poverty levels. What this means is that folks gotta figure out how to get the rest of their basic needs. Since it's against the law to have more than what the programs give you, you gotta scam. Assistance programs called this Welfare Fraud. People living on programs call it survival.
It takes much time and energy scrambling to get survival needs met that aren't covered by assistance programs, and learning how not to get caught. Obstacle courses, Catch-22's, and impossible criteria are built into every assistance program as a way of eliminating most people who need the help. As a result, time and energy must be spent learning what the traps are, and how to get around them.
For instance, the Food Stamp Program asks you where you live, if you share a kitchen, and if you share meals with anyone. If you so much as he one meal with a lover, roommate, or friend, that's considered meal sharing, and his qualifies you for food stamps. The rationale is: if someone shares their food even once with you, then you don't need the stamps because you have someone who feeds you. And if you share your food with someone else, then you must not really need food stamps, and as well, you might share food you've bought with Food Stamps, and that's fraud.
Of course, before the worker asks you if you ever eat meals with anyone else, they don't tell you why they're asking the question. Also, if you answer no, you don't share food with anyone, they come back, real fast at you with, "Never! You never have a meal with a roommate or friend?" So you think about it, and you say something like, "oh yep, once a month my best friend I get together and cook a meal." They gotcha! Instead of then telling you that meal sharing isn't legal, and asking you to agree not to food share when you get Food Stamps, they just quietly disqualify you and months later when you receive your letter of denial, you wonder what the hell went wrong.
Every interview for assistance, and every application form is chock full of questions like this, meant to trick you into disqualifying yourself for the program. Before any interview or filling out forms, it's important to call everyone you know who's gone through it, and find out what traps to avoid. Besides having impossible criteria, and trick questions, there isn't any one in assistance programs that tells you about other programs and services you're eligible for. I've never had a worker in for me about a service that not only did I need, but that I qualified for. This is the kind of information we must seek out, mostly by calling other friends who've more experience surviving on assistance programs. One more thing to do with all that "leisure" time. We're supposed to be wasting own eating Food Stamp bonbons while we paint our nails cherry red.
This myth that those of us on assistance get free rides of taxpayers' money while we do nothing all day is so infuriating. Nothing is ever free. I once figured out that I get paid less than two cents an hour (based on my month's SSI check). For all the work I do every day, just to get or keep services.
Some Lesbians think, at least we can rely on the monthly checks, we don't have to worry about our basic survival. Not so. Quicker than you can say jack shit, you've got a letter in the mail informing you they're cutting you all for one reason or another. Usually, they've made another stupid mistake, which takes you weeks of phone calls to straighten out. (By the way, I talked so much about phone calls because I'm homebound. For those not homebound, they make you come down and sit and wait.) Sometimes they find some minor technicality to bust you on. There's always the fear they'll find out about some scam you're pulling just to have the bucks to pay your light bill. And then there's the jealous or angry former friend, lover, or neighbor who reports you out of spite.
People are quick to say, "Oh, but I just read about a case of real fraud." When I ask about this case of "real fraud," I find out it's some womon who's getting twice the amount she supposed to get from AFDC. She also has 12 kids! No one can live off of AFDC with 12 kids. Even the extra amount she was getting what began to support that many kids. Real fraud is when temporarily broke class-privileged people or able-bodied people easily get on assistance programs, while the poor/working-class or disabled are denied. People are willing to believe this shit the media puts out.
Every year the assistance programs lose funding, and they start looking around to see how they can cut clients. Every year comes a reevaluation of one or more of your services, and since funding gets cut each year, it gets harder and harder to keep qualifying for the services you've already got, let alone get new ones.
Those of us on programs are a small percentage of the people who need services. Compared to people who're unable to get the programs, yes, I'm lucky. It should be a right, not a "privilege." I acknowledge this advantage that others need equally as much and have worked equally hard to get, but have been denied. But for healthy, able-bodied, class-privileged Lesbians, don't you dare tell me I'm getting a free ride, or you wish you had it so easy, or that it must be nice not to work, or that I'm lucky to get a monthly check. Not only do I work harder in my two hours per day than many of you do in your eight, I also live with the fear of being thrown off programs, with the degradation and humiliation dished out with the service and contact with workers, and lastly, I don't have the privilege you have of choice. I don't have the class or health privilege to keep me on assistance programs.
Thanks to Caryatis for explaining the difference between privilege and advantage, and for all her help with editing. Thanks to my lover Frieda for the title and some of the subtitles, and for all her input and critique.
posted with permission of the author