Category Archives: class issues

The Other 90%

Design for the Other 90% is a website which highlights design initiatives which are intended to be accessible to the “5.8 billion people, or 90% [of the world’s population], [who] have little or no access to most of the products and services many of us take for granted; in fact, nearly half do not have regular access to food, clean water, or shelter.”

The very fact that you’re looking at this website right now means that you are among the lucky 10%.

What does this have to do with disabilities?

Many of the technologies we use, including “basic” assistive devices which we take for granted, are inaccessible to most of the world’s population. A simple cane is out of reach. Prosthetic limbs, wheelchairs, communication books, the countless items we talk about here (and which many of us use every day) are not accessible to people with disabilities in most of the world. Our access (however limited it may feel at times, especially when we are fighting with people who want to deny us) to these things is predicated entirely by where and when we were born.

There are a lot of charities which do things like providing prostheses to people who have lost limbs to mines, warfare, car accidents, and other events. There are a fair number of charities which work to provide people with disabilities around the world with other assistive devices.

This is all well and good, and a positive step.

But what I like about Design for the Other 90% is that it’s actually focused on working with people in the regions they are trying to help. Rather than importing technology and ideas from somewhere else and trying to shoehorn them into place, the designers profiled are actually thinking about needs on the ground, and interacting with the populations they’re helping. It’s a cooperative effort to get more things within reach, and it’s an effort which focuses not necessarily on passive charity, but on active interaction and the mutual development of effective, useful technology that will actually work in the places where it’s being applied.

I think that charity itself can be extremely problematic, which is something I’ll discuss at another time, and I’m much more interested in supporting programs which focus on autonomy and the promotion of cooperation and eventual independence. That’s what excites me about Design for the Other 90%; it’s far from being the only resource that collects information like this, of course, it’s just what I happened to stumble upon first.

One of the neat things about the site is that it profiles a lot of programs, initiatives, and designs, including programs which are focusing on people with disabilities. I think it’s a good starting resource for people who are looking for a way to do something for the other 90%, but aren’t sure about where to start. I like that they specifically talk about different levels at which people can do something, whether that’s working on programs in the classroom or traveling to regions where people are in need to share skills with them. There’s a recognition there that people can participate on a lot of levels at their own levels of ability, and that feels rare to me when it comes to initiatives like this, as often they demand money or time and leave no other options for contributing.

Readers, can you think of initiatives/programs which fit in with the cooperative ethos which you’d like to promote? What do you think about the ideas behind Design for the Other 90%?

Medicaid: I’m Sorry, Did You Want Social Services With That?

While doing some unrelated research for work recently, I happened upon some information about Medicaid transportation services in Oregon which I found rather fascinating. And also rather annoying. Medicaid will, it turns out, pay for medical transportation for appointments covered by Medicaid (of course, this assumes that “transportation” can take any number of forms, including buses, taxis, and so forth), if other options aren’t available and the recipient is “eligible.” This does not include transport for medical appointments and evaluations which are not covered by Medicaid; you’re on your own there, apparently.

And, while I would hope that Medicaid would not, say, force a wheelchair user to use transportation which is not accessible by wheelchair, I could see them forcing someone with social anxiety to take the bus, or insisting that someone with PTSD from a traumatic car accident take a taxi, even if this is triggering. Let’s not think that Medicaid would be too generous, here, when it comes to covering transportation.

What’s really interesting to me is Medicaid’s approach to non-medical transportation.

Non-medical transportation falls into the category of anything not related to medical appointments and medical care. Which includes things like buying groceries, attending school, taking yoga classes, going to social events, heading to work, whatever. Living your life, in other words. Medicaid apparently will cover some types of non-medical transportation, for “certain” clients, although the site doesn’t go into detail about who might qualify for this magnanimous benefit. Which is, honestly, more than I would have expected of them, although it’s less than Medicaid should be doing.

The framing of this informational page intrigues me. It seems to be stressing that people should try to arrange for themselves whenever possible; it assumes, for example, that people will/should get prescriptions by mail, or that they should rely on their friends for transportation, including medical transportation, with transportation being covered only grudgingly. Presumably it also thinks that people should always order groceries and other things they need for delivery, rather than going out, and that people on Medicaid should not do things like going to dance classes or socializing at the coffeehouse or going to work or anything, really, other than sitting at home.

It’s also important to note that paid transport has to be preauthorized. People should not assume, in other words, that Medicaid will pay for transport.

This seems to me to be a deliberate ignorance of class issues, and of day to day life for people with disabilities.

It’s a class problem because it assumes that most people have friends with cars (and schedules flexible enough for them to take time out of their day to provide transport), and because it assumes that everyone has access to safe, accessible transit. Neither of these things is the case. In fact, for Medicaid beneficiaries, both of these things are actually seriously in question. Friends might have cars, for example, but they might not be safe or accessible. Or those friends might not be able to provide transport when it’s needed. Likewise, assuming a bus route goes close enough to get someone where ou needs to go, that doesn’t mean the bus is safe.

A friend might be able to go along on the bus ride for safety and to help carry things, but not necessarily. Again, friends might not be able to take time off from work to accompany someone to a medical appointment. Or friends might have very limited schedules, which means that if an appointment runs over, the friend has to leave. Even if that means that there is now no safe ride home.

And, of course, it ignores the fact that some people with disabilities are isolated, and that many of us are running out of favors. When you’re temporarily sick, friends are usually willing to pitch in and help out. They imagine themselves in that position and they figure what goes around comes around. But when you are disabled, and you have been for years, friends are less and less willing to help out. They’re tired, you’ve drifted apart, they feel like they’ve already given too much. In turn, there’s awkwardness when it comes to asking people for help when it feels like one is always asking for help, and when you’ve been constantly reminded that you need to be a good cripple and be nice and well behaved and not be a bother.

And that means that no, it’s actually not at all reasonable to demand that Medicaid recipients ask their friends for rides. It’s also not really reasonable to insist that they restrict their social lives because non-medical transportation is only available for a limited list of things. Medicaid focuses on providing the narrowest and most limited set of benefits possible, and on denying those benefits whenever it can see a way to do so.

That contributes to isolation in a pretty major way. If leaving your house is a huge production which involves a great deal of work, you’re less inclined to do it. And that means that you are less inclined to spend time with other people, to attend events which look interesting, to do things that you want to do. And, of course, over time that means that your friends assume that you can’t leave. Policies like this effectively trap people in their homes.

That’s not social services. That’s just injustice.

Budget Cuts Work in Funny Ways

California, as some may be aware, is in the throes of a severe budget crisis. There are a lot of politics behind the budget issues, which I don’t want to get into in detail here, but the net effect has been especially chilling for social services. California’s cutting cost of living increases, slashing budgets for programs like MediCal, and making other budgetary decisions which are having a profound impact on California’s most vulnerable: Californians living in poverty. Which includes, of course, many Californians with disabilities.

The poverty rate in California is over 13% at the moment. California also happens to have a very high cost of living, which compounds the issue; people who are not technically living in poverty in the eyes of statisticians are also struggling. The unemployment rate is also extremely high, adding even more pressure to the social benefits system in California. These budget cuts, in other words, are even more painful right now than they would be otherwise.

Widespread budget cuts sometimes work in peculiar ways, and I’ve been noticing this of late with California’s public libraries. Our libraries are, to put it politely, struggling. Budget problems in libraries might not seem like an issue as major as, say, cuts to social services which provide people with food and housing, but they’re still important. Because California’s libraries are heavily utilized by vulnerable populations, including people with disabilities, California’s homeless, teens, and Californians who are living in poverty.

No, a book won’t put food on the table. A book won’t keep you warm when it’s close to freezing and you have no home. A book won’t get you a job when you’ve been looking for months. A book won’t pay for the medications you need to stay alive.

But books are important. They’re important on a lot of levels, whether they’re an avenue of escape or an avenue of learning. Whether you want to read a fantasy novel for a few hours to get out of the world you’re living in or you want to research opportunities for going to college, the library can probably hook you up. Libraries provide a huge wealth of beneficial resources; assistance with filing taxes, access to the Internet, information about local laws and benefits programs which people might not be aware of, and, yes, educational programs. Events for low-income children. Free legal clinics. Pretty much anything you can imagine is probably happening at a library somewhere.

Libraries are valuable. They provide an important public service, and here in Fort Bragg, I’ve been watching our library flail for months now with increasing worry. It started with furlough days; the library is now closed on Fridays (it was “temporary” when it was announced way back at the beginning of the year). Then the staff cuts. Which had a ripple effect, as the interlibrary loan system slowed to a snail’s pace and the librarians were no longer able to help people with inquiries; if you’re a person with disabilities looking for information on the ADA to see if you’ve been wrongfully terminated, for example, a librarian probably can’t help you. Now neighboring Sonoma County is closing its libraries for two weeks in December.

In October, the BookMobile broke down.

The BookMobile is, well, a large bus filled with books. It brings books to rural areas in Mendocino County so that people who cannot otherwise access the library system can get books. They don’t do door to door delivery, but they’re usually very accommodating; if you have a friend to pick up books for you, for example, the BookMobile will release your holds to your friend with the understanding that the friend will bring the books by your house. Sometimes charitable groups will also send someone to pick up a stack of books at the BookMobile and then distribute the books to people in the community who wouldn’t otherwise be able to obtain them. Fortunately, they got it repaired, but it felt like an ominous sign.

The library system needs more funds, or it’s going to collapse.

And I think that’s a bitter shame, because libraries, to me, are one of the greatest things ever. They truly provide free information to anyone who wants it. You can engage with the library at whatever level you want, and in a library which has the resources to support it, you can go far.

Losing books might not necessarily be life threatening, but it certainly contributes to a decline in quality of life.

This is a story which might not seem to have an immediate disability angle; after all, lots of folks beyond PWDs are being impacted by the library cuts (and other budget cuts), but I think about how liberating books are for me and I worry. I worry about people with disabilities who use the library to find information and resources they need. I worry about people with disabilities who can’t access books in other ways (finances, inaccessible spaces, etc). I worry about all of the Californians like me who need words to settle, to relax, to escape, to entertain, to enrich. I think about the fact that the library cuts are taking away a precious resource, and about the fact that while books might not be officially considered “assistive devices” in the eyes of the government, they totally can be. And I worry.

Budget cuts work in funny ways.

Getting Through College with a Mental Disability

We’ve been talking a lot about how university faculty and staff individually respond to students with disabilities, as well as attitudes from universities as a whole towards identifying students with potential mental health problems. I’ve noticed a lot of stories in the comments on those posts about the struggles individual readers had when navigating the university system, so wanted to share my own story and my perspectives about what made it possible for me to get through and graduate from university despite the onset of my bipolar during my freshman year. I can tell you in two words what made the difference for me: class privilege. I believe that without the money and other associated trappings of upper-middle class status I got from my parents, I would not have finished school and likely would have become homeless and unable to access meaningful mental health care. Which in turn would have certainly resulted in my death by suicide. I think it’s important to look at how and why class made such a significant difference in my experience those years, to identify policies and mechanisms that need to be adapted so that all students, regardless of class status, have the opportunity to finish their educations.

Although I had experienced some relatively mild depression during my senior year of high school, it wasn’t until my freshman year of college that I started to experience significant symptoms. I had moved thousands of miles from home to go to school in a city where I had no friends or family. The only person I knew on campus was my high school boyfriend, who I was still dating at the time. Things started going downhill for me:  I started staying in bed more often, sometimes for entire days, I stopped going to class,  but most often, I thought of death. I had an almost endless range of plans and procedures that I didn’t carry out because all of them seemed to require too much effort. I discovered self-harm, which I thought I’d invented. And I was terrified at how easy it seemed to be to get potential weapons, to cause myself harm.

At that point, I went to the student counseling center. When the day of my appointment finally came, the woman, a master’s student, took out a set of Native American tarot cards. I still remember how shocked I was.  I got up and left, demanded a new counselor, and came back a few weeks later for my return appointment – again with a master’s student, who wanted only to talk about my parents. I have some pretty obvious sources of psychological trauma – past sexual assault, then-current psychological abuse from my boyfriend – and my parents are not one of them. At least that student could hear how seriously dangerous my current depression was and gave me some samples of anti-depressants to take. Those pills triggered my undiagnosed mania and sent me into a two-day spin of increasing self-harm and lying to people in the dorm to get ahold of knives or razors or anything with a blade, culminating in a psychotic break when I tried to jump out the 3rd story window of my friend’s dorm room because I knew I could fly and wanted to test it out.

That landed me in the psych unit of the nearby community hospital. The hospitalization g0t my meds straight and got me on a mood stabilizer and got me set up with some tranquilizers for breakthrough hypomania or anxiety, so I was much more stable than I had been on the meds prescribed to me by the university health center. But a week after I was released, my roommate and best friend was hospitalized after a suicide attempt and sitting in the waiting room with her to be admitted triggered me badly enough that a few days later I self-admitted because I was scared of doing myself serious self-harm. And that’s when things went seriously sour with the university.

The university did not want me to return to the dorms after leaving the hospital, ostensibly because my behavior might frighten, upset, or otherwise disturb other dorm residents. The RA had also reported scabs on my arms (from self-harm) as suspected heroin use, so I had to disclose my self-harm to dispell that. (Although I’m not sure which would have been preferable from the university’s standpoint). If I’d been expelled from the dorm system at that point, I would have had to drop out of school as there was absolutely no way I was able to maintain an independent residence. Alternately, I could have couch-surfed.

So my parents threatened to sue the university for discrimination on the basis of mental disability. This required a whole lot of privilege – comfort with the judicial system, awareness of civil rights protections, financial ability to hire an attorney, willingness to disagree with the authority of the university. And although they hired an attorney and paid a fat retainer, the university caved before they actually had to file a suit. They agreed that I could return to the dorm system, but moved me to a new dorm across campus where I knew nobody and my roommate had had a double room to herself and greatly resented my arrival.

After I returned to school, my parents chose to pay for my ongoing mental health care out of pocket so I didn’t have to rely on the student counseling service for treatment. They paid for a private psychiatrist and a therapist who I saw twice a week – at what must have been astronomical cost to them. I know they are still involved in some collections disputes with the hospital, some 15 years after my hospitalization.

That’s a lot of personal story, but I think there are some really important points to examine. First, at no time during any of this was I ever in academic trouble nor did I need or request any academic accommodations (part of my problem was defining myself as someone who did well in school so I didn’t allow myself to waver academically, including being released from the hospital in the morning and taking a final that afternoon). Discussions about accommodating students often (reasonably) focus on academic accommodations, and I think there’s an assumption that any student having significant problems would be identified through the academic context before they needed housing or other accommodations. I am still not aware of how or if the office of students with disabilities would handle this kind of issue or whether they advocate on the student’s behalf. But accommodations in dorm life are just as crucial for students with disabilities as academic accommodations, especially when they live on campus and have no other real alternatives.

I often the housing concerns framed as a concern for other students – being around someone with a significant mental illness might traumatize them. And I agree that finding me dead in a bathroom would have traumatized someone. But my self-harm and my mania did not seem to me to be any more potentially traumatizing for other students than my dormmates who would go to the communal bathroom to throw up after every meal, those who were using hard drugs like cocaine, or even those who would binge drink until passing out naked on the stairway, none of whom ever suffered any potential housing consequences. To say nothing of my then-boyfriend, who was then causing me active and ongoing psychological trauma through his emotional abuse and who got to stay in the dorm with all our mutual friends after I was shipped across campus. That I was the only student looked at by the university and potentially subject to penalties – and identified as potentially problematic because I sought lifesaving and appropriate care – speaks volumes about how students with mental disabilities are seen by administrators.

My second point of contention is the degree to which the university actively contributed to my mental health problems before penalizing me for them. The manic episode which triggered my initial hospitalization was a direct result of the anti-depressants they prescribed for me. And I wouldn’t have been such a disaster and in need of immediate and emergency medication if my treatment hadn’t been delayed by over a month because of the first unhelpful counselor. Despite this, their only proposed solution was to get rid of me entirely – which seems to provide a disincentive for the school to provide effective counseling services. If the school pushes students into crisis, it can then remove them from school and campus. So why try to effectively treat someone?

The final point is the one I started with – it was solely due to my class privilege and the unwavering support of my privileged parents that I was able to fight the university to remain in the dorms and finish school. It was also due to them that I could access meaningful mental health care and treatment that allowed me to keep going in school. And it is stupid as hell that my luck in being born into such privilege was the determining factor in whether I moved forward or dropped out. Unfortunately, until the overall approach of universities towards dealing with students like me is drastically overhauled – to see us not as a threat to other students but a valuable part of the student community, to support us rather than trying to eliminate us out of fear – privilege is going to continue to be one of the most relevant factors.

I’m still thinking about how to best move forward on these issues. I have not done a great job of following up with my own university, primarily because I never want to speak to or be involved with them in any way ever again. But it seems like these issues must affect a sizable number of college students and contribute to the systemic problems that make it more difficult for people with mental disabilities to obtain higher education. I remember my time in college as a terrifying and desperate effort not to get kicked out – surely we can do better for the next generation of students.

Mental Health Coverage Makes Economic Sense

There are a lot of reasons to support health care reform and the inclusion of mental health treatment in that reform. I personally support it because I think health care (including mental health care) should be a basic human right of every human being and believe our government has a moral and humanitarian obligation to provide it to everyone.

But for those not convinced by that argument, there are some strong economic arguments for providing access to mental health coverage. First, evidence shows that overall health costs decrease when mental health care is covered. Second, tax dollars spent on mental health care tend to save tax dollars in other areas, including law enforcement, jails and prisons, homeless services, and emergency room visits – so spending money on mental health services saves money in other areas.

It’s clear that increased mental health coverage would result in increased usage of mental health services. A study by RAND in the 1980s found that decreased out-of-pocket costs for consumers significantly increased usage of outpatient mental health services, much more of an increase than demand for ambulatory health services. Even with this increased demand for services, though, overall costs are reduced, because an increase in mental health spending “yields concomitant decreases in total health expenditures and employee absences.” A study of an individual employer-based insurance policy found that the savings from decreasing coverage of mental health were entirely canceled out by increased physical health costs. Additionally, untreated behavioral health problems create significant costs for employers in terms of short-term disability absences. So even though increased mental health coverage would result in increased demand for and spending on mental health services, overall health coverage costs would stay the same or decrease due to the benefits of the mental health treatment. (See SAMHSA for citations)

Additionally, the effect of mental health coverage in reducing city and state expenditures on services such as law enforcement, jails, and homeless services is well established. After California expanded community mental health services through a ballot proposition, counties reported dramatically reduced use of emergency room visits for mental health issues. Transitional age youth (18-25) provided with mental health coverage achieved a 76% reduction in days homeless and a 49% reduction in days hospitalized. Adult participants achieved an 89% reduction in days spent homeless and about a 40% decrease in incarceration. These effects significantly reduce expenditures by cities and counties to treat the symptoms and consequences of untreated mental health disabilities – while at the same time allowing individuals to live their life without risk of homelessness or incarceration due to their disabilities.

Again, I would support expanded coverage of mental health services even if there were a cost associated with it. But because we can provide these services while saving money spent on physical health care and reduce the need for emergency rooms, homeless shelters, and jails to be primary mental health providers, there’s a very strong economic argument that we need to provide this coverage.

Advocacy in Flawed Systems: Using Shackling Language to Help a PWD?

In my professional life, I’m an advocate at a non-profit agency that provides free legal services to low-income folks. I work primarily in the area of public benefits, which means I’ve done a lot of work with the program from the Social Security Administration (SSA) to assist low-income folks with permanent disabilities: Supplemental Security Income (SSI).  When I read Lauredhel’s post about the language of shackling and the problem with terms like “wheelchair bound,” it reminded me of the type of problem advocates and people with disabilities encounter in navigating the SSI application process.

Some quick background on SSI — it’s a program from the Social Security Administration, but does not require past work history or employment where the individual was paying into the Social Security system. Those programs that do depend on past work history and contributions to Social Security are termed insurance programs, where a person who becomes disabled or turns 65 can collect disability or retirement insurance based on past contributions (premiums) paid to SSA. Those insurance programs are available to anyone who has paid in, regardless of income or resources — Donald Trump and Bill Gates will both collect retirement insurance starting at age 65.

SSI, on the other hand, is considered a “welfare” program, because it is based on the income and resources of the applicant and doesn’t depend on past contributions to SSA. A person has to be very low-income in order to qualify for SSI and there are strict limits on the resources a person can have, including property, bank accounts, or other assets. If a person qualifies for SSI, they receive a maximum Federal grant of $674 a month. Some states supplement that grant – in California, the maximum SSI grant is $850 a month.

Advocacy usually comes into play in determining whether or not an individual claimant is sufficiently disabled to qualify for SSI benefits. In order to qualify, an individual must have a physical or mental impairment that prevents them from engaging in substantial employment for a period of 12 months or more. When an individual applies, they turn in medical records, forms and statements from their doctors, and forms about their work activities and daily activities and general impairments. SSA then considers and often decides that the applicant is not disabled, requiring the person to go to an administrative hearing with an Administrative Law Judge (ALJ) to determine whether or not the person is disabled.

I represent people in this process and at these hearings, where my client’s goal is to convince the ALJ that they have a disability that prevents them from working and therefore should get SSI benefits. For many of my clients, SSI money is their only possibility for ongoing income that would allow them to keep their apartments, buy food, pay for medications, and otherwise survive. This means that convincing the ALJ that they are sufficiently disabled is of paramount importance to the clients.

And here’s where the dilemma arises. When evaluating clients, ALJs are not interested in nuance. They want to see a claimant whose disability limits or impairs their functioning so significantly that its a foregone conclusion that person will never be employed again. Any functional abilities a claimant has – regularly visiting with friends from church, doing their own grocery shopping or food preparation, ability to use public transportation – makes it more likely that the claimant will be found not disabled, so all of those abilities have to be excluded from the discussion or explained away as insignificant abilities. An ideal claimant would be someone in a coma.

This means that when I am advocating for an individual client, I need to ignore any and all functional abilities the person has while highlighting and emphasizing each and every functional limitation. I also need to show that this person is so affected by their disability that they are totally incapable of working. And it is when I am framing these arguments and drafting these briefs that I feel very uncomfortable. I find myself writing paragraphs like this:

Ms. R  is a 56 year old female who suffers from significant and severe physical and mental disabilities, including depression, anxiety, chronic back pain and headaches, and diabetes. She has lost interest in all activities, is so forgetful that she cannot leave the house for fear she will not be able to find her way back, and feels so useless and such a burden to her family that she thinks constantly of death and dying.

All of those things were true about Ms. R. But she also told great stories about how she used to hike in the Sierra Nevada Mountains and taught us how to make Cuban coffee and was an amazing singer. She was a great mother to her adult son, who loved her beyond measure and looked at her with adoration while she told us stories. But none of those characteristics were relevant to the SSI determination and if they’d been included in the brief, the ALJ would have been less likely to approve her application.

So when I’m writing a brief, I find myself playing to those stereotypes of restriction and limitation in order to fit into the ALJs pre-conceptions of what a person with a disability looks and acts like. I have no doubt I’ve used the term “confined to a wheelchair” in a brief. I wouldn’t be surprised if I’d described a claimant as “totally dependent on outside assistance for even basic functioning.” And I’m horribly conflicted every time – I’m advancing my client’s immediate goal of obtaining benefits that will allow them to stay housed and fed, but I’m perpetuating a negative stereotype of people with disabilities and reinforcing the flawed perspectives of the ALJs.

Because my ethical obligation to my client requires me to zealously pursue their goals of obtaining benefits, I’ll swallow my concerns and write a brief that makes them look as pathetic and incapable and needy as I possibly can. But this tension between serving the needs of individual clients while reinforcing a larger system of thinking about people with disabilities this way is a difficult one.

[Note: like the rest of my policy posts, this is entirely US-centric. This description of SSI regulations and requirements is not intended to be a guide for applicants, just a broad overview for purposes of this discussion. Do not rely on this information in seeking benefits.]

So, There’s This Conversation With My Pharmacist…

…that I am really tired of having.

For the most part, I am pretty fortunate when it comes to actually dealing with the process of getting medications. I don’t take any OMGADDICTIVEADDICTIVE medications which would require people to place hoops in front of me to jump through every time I need my meds. My pharmacy is usually very together and I rarely have any problems with them. Since I am currently surviving about half on samples and half on prescriptions paid for in cash, I don’t actually have to go into the pharmacy that often.

Except for this one medication.

Just the one.

Can you guess what it is?

Here’s how the conversation starts:

Me: Hi, I’m here to pick up a prescription for Smith?

Pharmacist/Pharmacy Tech: Ok, great.

(Whoever is helping me goes to grab it from the back. When they bring it to the front, I can clearly see that it’s not the right package.)

Me: Oh, uhm, Dr. Redacted called in a three month supply? That looks like a one month package.

Pharmacist/Pharmacy Tech: Oh, well, the discount plan only pays for one at a time.

Me (confused): I’m not in a discount plan? I always pay cash. For a three month supply.

Pharmacist/Pharmacy Tech: But the discount plan only pays for one month at a time.

Me: I have been getting this prescription at this pharmacy for a very long time. I always. Pay. Cash. For a three month supply. Every time! I swear!

Pharmacist/Pharmacy Tech: Oh, you’re not on the discount plan? Sorry. But the insurance still only pays for one at a time.

Me (gritting my teeth): I don’t have insurance. (I come in every three months to pick up this prescription, I pay in cash for a three month supply, and every time, we have this exact same conversation. In fact, the last time this happened, you were the person who helped me.)

Pharmacist/Pharmacy Tech: Oh, ok. Sorry. Well, do you want this?

Me: No, I want a three month supply.

Pharmacist/Pharmacy Tech: Oh, well, I’m going to have to put it back into stock…and then redo the prescription…are you sure? It’s very expensive to get a three month supply.

Me: Yes, I’ll wait, thank you. (No, I would not like a month supply, my need for this medication is not going to suddenly stop in a month, therefore, I would like three months, so that I can come into the pharmacy once, NOW, rather than three times.)

Now, what sort of prescription could possibly require this much fuss? Could it be expensive (it is, a bit)? Could it be dangerous (no, not really)? Could it be…birth control?! Yup, that’s right, it’s birth control. And the conversation gets better. The pharmacist checks off the new package with a three month supply, the tech brings it up to the counter to ring it up, and this happens:

Tech: Most people use those green cards1?

Me: Oh, I don’t qualify for that.

Tech: Have you considered applying for one?

Me: I don’t qualify for that program.

Tech: Oh, why not?

Me: … *eyebrow*

Tech: Ok, well, $235.87!

So, here’s the thing. This sounds like a kind of minor annoyance. And, in the grand scheme of things, it is. Way worse things happen to people with disabilities than this. Way worse things happen to people with disabilities in pharmacies than this. I am really not complaining that much. If this is the worst thing that happens to me in the pharmacy, so be it.

But, for me, this is an endeavor which basically turns the silverware drawer upside down. Spoons? I’m out. For days. The pharmacy is a loud place. It’s bright. It is filled with smells which make me anxious, and loud noises, and noxious magazines which tell me about how I can take a diet pill and trim inches and pounds off my tummy.

This prolonged social interaction agitates me every single time. There’s usually a line. People are glaring at me because I am taking so long. People are rolling their eyes because I insist on having my prescription filled properly. I am trying to control myself, because it’s not the tech’s fault, it’s probably some glitch in their system, but I want to lunge over the counter, speak sternly to someone, and liberate a year’s supply of BC from the back room before fleeing out the side door. I start to hyperventilate. I fidget. I feel like I am exploding inside.

And, every single time, I ask if it’s possible to put a flag in the system so that they know that I will pay in cash for a three month supply. So that a 40 minute ordeal every three months could be turned into a five minute in and out trip every three months. Every time, someone says “uh huh, we will look into that,” and then, the next time I come in, this happens again.

This is a pretty minor thing, in the grand scheme of things, but it’s yet another tiny little facet of the American health care system which is broken. While I’m waiting for my correctly prepared prescription, I watch people go through the line. People with MediCal or Medicare or CMSP or any number of other welfare programs get to the counter, hear that a prescription has been denied, and shuffle away without it. People with private insurance get told that the authorization for a prescription hasn’t come through, or it’s been denied, and they look at the prescription and the price on the register, and they walk away without it. I can tell that the people who know they will have to pay cash, like me, arrive at the counter and weigh their options; pick up the prescription today, put off grocery shopping another week?

I’ve actually had the pharmacist refuse to fill this prescription in the past until I’ve paid for it. And, you know, I think that they think they are doing me some sort of budgeting-related favour by trying to get me to take a month’s supply. But it’s not like I’m not going to need it next month. And the month after. And the month after that. The way I budget, I would rather pay a large lump sum every three months than get dinged every month. Every three months I see a collision of class issues in the pharmacy. The haves and have nots. The assumptions that get made by the pharmacy staff. The callous and routine denial of prescription benefits to people who need them. And every three months I think there was to be a better way to do this.

Comparatively, I’m lucky. I can at least afford to pay for my prescriptions most of the time. There are a lot of us out there who cannot.

  1. She is not, in this case, referring to a US Permanent Resident card, but rather to the cards issued to people in the FamilyPACT program, which provides reproductive health services for low income Californians. I would note, among other things, that this program at one point paid a bonus to low income folks who got sterilized. I don’t think they do this anymore, but they definitely pay for/encourage sterilization. Oh, and it gets better; once you are sterilized, the program refuses to pay for reproductive wellcare like Pap smears.


Being discriminated against or exploited because one is female may be painful and dehumanizing, but it may not necessarily be as painful, dehumanizing, or threatening as being without food or shelter, as starvation, as being deathly ill but unable to obtain medical care.

– bell hooks, Feminist Theory From Margin to Center

Ableist Word Profile: Intelligence

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Wait! you may be saying to yourselves. Kaninchen Zero, what the hell is ‘intelligence’ doing in the Ableist Word Profile series? Intelligence isn’t a disability!

Okay, so maybe you’re not saying that. But I’m serious. I hate this word. Hate the concept. With a hatred that is a pure and burning flame. True, part of this is because I get told all the time that I’m like wicked smart. When it’s some of the more toxic people in my family saying it, there’s more to it: You’re so intelligent so why are you poor? Other people use it as an opportunity to put themselves down: You’re so smart; I’m not; I could never do the things you do.

Does intelligence exist? At all?

Maybe it doesn’t.

There are tests that measure… something. They’re called Intelligence Quotient tests. The idea is that these tests actually measure some fundamental, real quality of human cognition — the people who believe in IQ believe that there’s a single quality that informs cognition as a whole and that people who have higher IQs have more of this and think better and perform better generally while people who have lower IQs have less of this quality and perform more poorly. Sorry; it’s a muddle of a definition, I know. Partly it’s a conceptual and linguistic problem — some things are not well defined and these things tend to be the things we consider to be fundamental. It’s much easier to define smaller things at the edges; it’s easy to define a fingernail. It’s harder to point to where blood stops flowing away from the heart and starts flowing back towards it.

The man who developed the first intelligence tests, Alfred Binet, wasn’t actually trying to measure intelligence. He’d done some work in neurology and psychology and education, and in 1899 he was asked to become a member of the Free Society for the Psychological Study of the Child. Primary education in France had become mandatory, so a lot of work on educational psychology was being done due to the large demand and the large available sample population. Binet, and others, were assigned to the Commission for the Retarded. (Again, please accept my apologies; I wouldn’t use the word if it were mine.)

The problem he was trying to solve was how to identify — consistently, without having to rely on the judgment of people who could be swayed by all sorts of personal biases (as we all are, including me) — those children who needed extra help. Maybe they had developmental disorders, maybe they had learning impairments along the lines of ADD/ADHD, dyscalculias, dyslexias, maybe malnutrition, injury, or childhood disease had caused neurological damage or limited development. The specific etiology wasn’t the point; the point was to be able to know who these children were and get them assistance. Which may be ascribing too-noble motives to him, but he doesn’t do so great later. Continue reading Ableist Word Profile: Intelligence

Disability, Gender, and Poverty

I came across a new study by the Center for Economic and Policy Research, a D.C. think tank, examining the relationship between disability and poverty (pdf).

I was very interested to read this because, while its not discussed in this study, poverty in the United States affects women at rates much higher than men. “The US Census, which uses a comparatively conservative absolute poverty measure, reported in the last decennial census that overall 17% of females, compared to 13% of males, age 18 to 64 living in the largest US cities, had incomes below the poverty threshold. Likewise, 36% of female headed families with children under age 18, compared to 21% of male headed families with children, in the largest 70 cities, had incomes below the poverty thresholds.” For this reason, I think issues of poverty in general affect more women than they do men. Studies have also found that “women are more likely to experience disability than men, particularly disabilities related to mental health,” so the population of people with disabilities living in poverty is likely to have significant numbers of women in it.

According to the study, disability is an enormous factor in poverty. “About half of all working-age adults who experience income poverty have a disability, and … almost two-thirds of all such adults experiencing long-term, income poverty have a disability.” This means that, although poverty is often thought of as an issue primarily affecting Latinos, African-Americans, and other minority ethnic and racial groups, “people with disabilities account for a larger share of those experiencing income poverty than people in any single minority or ethnic group — or, in fact, all minority ethnic and racial groups combined.”

The study gives more information on the prevalence of disability in the overall population, finding that about 18.7% of the non-institutionalized population (excluding group homes, jails, etc)  reported some level of disability. About two-thirds of those people had a disability that “seriously interfered with everyday activities, made it difficult to remain employed, or rendered the person unable to perform or in need of assistance with various functional activities.” Looking at working-age adults over a seven-year period, the study found that “about one in four working-age adults experienced a disability [during the 7 years], but only 10 percent of them were disabled during the entire period.” This supports the view of disability as a dynamic phenomenon that can result in increases and decreases in the severity of impairments over time.

The employment rates for people with disabilities in the United States are strikingly low. Among women age 16 to 64 (considered working-age), about 65.8% of women without disabilities are employed, compared to only 26.9% for women with disabilities. The study attributes this discrepancy to both “the considerably lower rate of labor force participation among people with disabilities and a higher rate of unemployment for people with disabilities in the labor force. This means that women with disabilities are less likely to try to work, but even those who want and are actively seeking work are less likely to find it than women without disabilities. (I should note that per the study, “a number of EU nations — including all Nordic nations –and Canada have higher levels of employment among people with disabilities than the United States.”)

These disability rates and low employment rates have a drastic effect on poverty for people with disabilities. Of those working-age adults who experience poverty for at least 12 months, about half have at least one disability. Of those who experience longer term poverty, defined as at least 36 months of poverty during a 48-month period, have one or more disabilities. This does not mean that having a disability causes a person to become poor, or that being poor causes a person to become disabled, but suggests that there is a strong relationship between the two. A person who is poor and cannot access meaningful health care is unlikely to receive the treatment, aids, and other assistance that would help her to manage her disabilities. A person who is disabled is, as shown above, likely to have difficulty finding or maintaining employment, causing income loss and pushing them towards poverty. Basically, the two conditions reinforce each other and make it more difficult for an individual to address either one.

But we’re not done – there’s an additional problem. The poverty estimates discussed above define poverty using the Federal Poverty Rate, a rate determined by the U.S. Government and adjusted each year. Currently, a single adult without children is considered “poor” only if she earns or otherwise receives less than $903 per month, $10,836 a year. If she has a kid, the family is considered poor only if they receive less than $1,214 a month or $14,568 a year. There are significant criticisms of the current rate, which is calculated primarily on the cost of food and doesn’t account for regional differences in housing costs. Another problem with the rate, though, is that it looks only at income coming into a household and not the necessary costs  – which would likely be higher for people with disabilities, who need medical care, assistants, mobility aids, or other costs to achieve the same level of functioning as a person without a disability.

This means that people with disabilities are “40% to 200% more likely to experience various material hardships than people without such disabilities … among persons living below the current poverty line, a person with a disability would require income of roughly two to three times the poverty line to have the same lower risk of experiencing most material hardships as a person without a disability.”

I read A LOT about poverty and its causes and how it can be addressed through policy solutions and why current policies aren’t working. But the idea of viewing poverty as a disability-related issue is a new one for me. The study explains that this is common, as “contemporary policy debate and research about income poverty in the United States is largely silent about disability… books and papers by leading income-poverty experts and researchers only rarely discuss disability, if at all.” The mention a recent set of papers presented by the Brookings Institute on “high-priority poverty strategies for the next decade” that briefly mentioned disability issues in passing, instead focusing largely on issues of marriage. This is another way the issue intersects with feminism – many contemporary poverty policies are aimed at encouraging poor women to marry or penalizing them for having children, policies based on stereotypes of “welfare queens” or poor women having extra babies in order to collect additional welfare money.

This study makes clear that poverty must be examined and understood through a lens of disability in order for us to create and implement policies that will adequately address the realities. People with disabilities are much more likely to experience poverty than people without disabilities, and the vast majority of people who experience long-term poverty have disabilities. People with disabilities are less able to obtain employment even if they are actively seeking it. And people with disabilities are likely to experience more significant material hardships (lack of shelter, food, etc) than people without disabilities even if both are equally poor according to the Federal Poverty Level.

There is a glimmer of hope in the study, though, showing that this is not an inherent or unavoidable situation for people with disabilities. In fact, the study found that “the U.S. is a notable outlier when it comes to poverty rates for disabilities. The U.S. has a higher income poverty rate for people with disabilities than any other nation in Western Europe as well as Australia and Canada. A handful of nations – again mostly Nordic – have eliminated the disparity in poverty rates between people with disabilities and those with no disabilities.”

So my plan is either to import Nordic social policies or just export myself to Scandinavia. See you in Reykjavík!