Happy Friday! Time to break out that much-lauded Cat-Only Internet Filter.

…. but wait, you say! That’s not a cat! No, it’s not, but it’s cat-related!

I’m growing cat grass. I’m trying it with plain ol’ wheat grass seed in a packet, and growing from one of those kits at the same time — this one has wheat, oat and barley seed. This is my first time actually potting plants with my own soil, germinating the seeds etc. Yeah, it’s not much but it still has me excited. This is the two pots (kit seed, packet seed) on our window sill.

Now for some actual cats! Mitsy gets comfortable in some awkward positions.

Buddy, on the other hand, is lying belly-up as usual.

Would that I could borrow some of his bliss.

(Cross-posted at Feministe.)

There are several different topics I’m trying to write about. Sometimes, when I start typing, the words just flow out and I end up in a totally different place than I was intending to go. The following was part of another post, but it was just too incongruous with the style of the rest of the piece, and long at that. And these topics deserve to be addressed on their own.

***

Before we go any further, you guys are going to need a quick tutorial on models of disability.

There are a number of models, but the two primary models are the medical model and the social model. These are the two most often discussed because of the particular ways they conflict with one another.

The medical model centers around the individual. The medical model defines disability in opposition to the normal body/brain, as deviating from that model of normalcy, and any problems that arise in your life are seen as arising from your deviation. Thus, these problems are to be solved by addressing that deviation — by bringing your body/brain closer to the normal model.

The social model centers around the structure of society. The social model does not seek to define disability: instead, it proposes that the problem is that society is built such that many people are prohibited from full participation in society because of their differences. Under the social model, the problem is not the difference, the problem is that society does not accommodate that difference. “The problem is not the person” is a common refrain from champions of the social model.

In short, you might say: The cause of exclusion is not the disability. The cause of exclusion is how the rest of society treats disability. Therefore, what needs to be addressed to eliminate this exclusion is not the individual person’s condition. What needs to be addressed is how society is set up in such a way that this person faces trouble when attempting to exercise hir right to participation equal to that of a non-disabled person. What do you change? Not the person. Society.

There are many other models of disability (including the charity model, which I think deserves more focus because of the real and lasting damage it does to disabled people) listed and explained here. It is worth a read. (You can try the Wikipedia page, but it appears to be written from an abled perspective, and of course the one model they promote besides the two above is the “market” model — how quintessentially white-American-male of them. A lesson in lenses.)

***

That said, I’d like to take a moment to establish a point regarding respectful language.

When at all possible, I prefer to use the term “condition” rather than words like illness, disease, disorder — which require the assumption that something is wrong with the person. The word “condition” has a more-or-less neutral connotation, in my experience, which allows me to describe the condition (see what I did there?) of a person’s body and/or mind without loading them down with all the detritus attached to the medical model, which assumes deviance over variance.

That said, sometimes I lapse, and fall into using the more common terms — like, here, mental illness (similarly, chronic illness, invisible illness, etc). I do honestly believe that there has to be a better way to describe the same thing — [mental/chronic/invisible] health condition? — and honestly prefer that those whose brains and bodies are normative would stick to the neutral language.

But something holds me back from being too strict with myself, and others in the atypical realm, on the language issue. Sometimes, I feel like embracing the commonly-accepted language to describe my disability-pride, body-positive, radical acceptance politics might help change exactly what concepts come to mind when people use that language.

Thing is, this isn’t something that can be done in every instance. There are words which simply aren’t going to be reclaimed to a point where even non-group members can use it without calling forth all of the hate and pain associated with them. There is absolutely no acceptable use of the word “retard” or any derivative thereof.

But every once in awhile, a space seems to open up for those of more radical leanings to take hold of that language and transform it.

You see, it’s happening. Right now. With the disability movement.

Think about the word “disability.” There are so many problems to identify with using this particular word to describe a certain category of people. It uses negative language — the prefix “dis-” — to describe them, which sets the tone for all the discussion that follows. The word necessarily implies a lack of something, which is a screwy way to describe a set of people and leaves all sorts of trouble in its wake. And the assumption that people with disabilities do not have ability is kind of silly, isn’t it? Ability to do what? Maybe certain folks with disabilites cannot walk — or talk — or perform certain self-care tasks — or work for pay. But those people do have the ability to do a host of other things. Why is it only that-which-exists-in-opposition-to-abled-people which is important to identify? And why can these differences never be positive?

That’s just a start.

But here’s the thing. The disability community — not unequivically, but more or less — has embraced this word and run with it. Fuck all y’all and y’alls shitty assumptions, they say. We’re DISABLED AND PROUD!

And the disability community is holding its ground. It has created a positive identity out of the language that the scornful world shoved on us. A wide-ranging, rich and deep identity that is all its own — it’s disabled people deciding how to define their disability. Self-determination at its best. And if anybody thinks otherwise, well, fuck ‘em.

And make no mistake, disabled folks are everywhere, and the community they form as a group is strong and working hard and accomplishing incredible things.

I have no shame about calling myself disabled, or saying that I have disabilities. I used to — along with other fears and anxieties about the term — but the more I connect with this community, the less I give a shit about all these problematic ideas and attitudes that abled folk come up with. I was holding back based on a construction that was wholly centered aroudn the ideas of people who were not disabled. Why should I be giving them the biggest say when determining my own identity?

The term “mental illness” (et al.) has its problems. But I’m hoping — really hoping — that it can come to inhabit the same sort of space “disabled” does now. Maybe not. Maybe I’d be better off switching to “health condition” to try to neutralize the toxic attitudes of the rest of society.

I also hope that people with mental conditions which typically aren’t considered “severe” enough to be categorized with conditions like schizophrenia and borderline — depression and anxiety disorders, for instance — might come to realize the similarities they share based on how society treats them both — and accept a term that puts them square beside fellow marginalized folk, standing in solidarity.

These are all my own thoughts. Every person has their own ideas, and is free to identify however they feel is most fitting for who they are. There will not be a monolithic voice here. And there may well be criticisms of what I’ve written here, and I’m ready to accept those if so.

But I wanted to clarify right now, so that people understand exactly what is behind these words when I use them.

***

A quick aside: many of us with invisible disabilities, with mental illness, with health conditions that aren’t as inhibitive as we usually think when we think “disabled,” have trouble identifying ourselves as disabled — we feel like we don’t count.

I want everyone to know this: the disability community welcomes all of us warmly, if and when we come around to that identity. The disability community readily accepts these people.

You know who makes the biggest fuss about how certain people “don’t count”? — Abled people. Abled people who have no investment in the disability community. Abled people who aren’t interested in actually listening to people with disabilities to learn what they actually want from the rest of the world. Abled people who aren’t interested in actually addressing practical issues for the disabled.

These are the people who police that boundary. These are the people who try to shame you. Not disabled people. Abled people.

Don’t let them make you afraid of identifying a certain way. Own your identity. Have it for your reasons. Not theirs.

***

Another aside: I would much rather people adopt the social model than adopt people-first language, if I were forced to choose one. I appreciate people-first language and, given that we are thankfully not forced to choose one, I use it.

But sometimes I feel like abled folk take it on to the exclusion of any other action to help PWD. There are so many other things we need. Please do something real about them. Don’t just stop at changing one fucking word in your vocabulary. Thanks.

(Cross-posted at Feministe.)

I’m having a hard time settling in without fazing out and completely losing cognition. What else to do but turn to youtube?

MOON SHOE IT UP!

Second, here’s Billy Mays (RIP) going through the drive-through at McDonalds.

(I’ve heard that (surprise, surprise) the morning radio show people this is associated with are assholes, and I’m sure they are, given that it’s pretty much a requirement in the genre. Fortunately, they don’t appear to have part in this video — it’s all Billy.)

What’s been cheering you up this week?

(Cross-posted at Feministe.)

Okay, here’s what you need to understand going in: my mother is mentally ill, most likely with borderline personality disorder (characterized by certain patterns in a person’s social interactions). She is extremely passive-aggressive, as well as manipulative and emotionally abusive.

Around sixteen years old, when I was just beginning to realize how fucked-up my family relations were, I devised a rule for myself: information = ammunition. You see, anything my mother knows about my life will be twisted around and used against me. Today, tomorrow or ten years from now. And the end result, that ammunition, may bear no actual relation to reality. She takes these bits and pieces, turns them over in her mind, and makes what she wants of them. So my #1 rule of self-protection in this relationship is withholding.

The other thing you need to understand, I will go into below the emails.

So… Read the rest of this entry »

At Feministe for the next two weeks?

That’s right. ME! Here’s my intro; be sure to check in at Feministe over the next couple weeks to see how things are going!

Buddy has more chair-time:

Whoops. Dozed off there.

Mitsy wants to know what the deal is with these chair things:

… and then retreats to her more typical hideout: the window.

After getting kicked off my low-income health insurance at age 18, going several years uninsured and uninsurable, sticking out the 24 month wait after being approved for Social Security disability payments before I could join Medicare, and then losing those payments and that Medicare because I had the temerity to get married (according to our system, my husband is not an equal partner but, because I am disabled, my expected caretaker, thus removing the burden of care from the state), I finally got a taste of the insurance all those class-privileged people have — you know, employer-based insurance (that actually is insurance and not those fake “discount plans” or “you can pay us a premium, but we don’t actually cover anything a human being might need” scam plans that low-skill employers offer to give the appearance of being socially conscious).

I am lucky that my husband is employed by the state, and represented by a strong union, so his health care benefits are good.

I was upset when I had to transition from one side of provided-by-the-state care to the other, because it was considerable work for me and for my health care providers, but over time I have come to be immensely grateful for my husband’s benefits. Rather than filling 30-day supplies of my medications at retail pharmacies and, every month, running into some hang-up or another that left me without one of my medications, or having to space out my medications, for days or weeks at a time, I now receive all but one of my medications in full 90-day supplies (including four packs of birth control pills, not three!) with no hassle. I order the medications online, and if the prescription is run out, my doctor is notified, and he sends a new one in electronically, and everything proceeds as normal. My medications arrive in the mail within days. It is the easiest it has ever been for me.

So now I am free of what was probably the biggest burden I had to bear in obtaining reliable health care. The only medication I still receive a 30-day supply for is my Vicodin, which is not considered a “maintenance medication” (despite filling the same function as my Lyrica, tramadol, Effexor, cyclobenzaprine and Mircette) and thus must be filled retail. Even that process has been considerably smoothed since the insurance switch, though not devoid of problems entirely.

And now I never have to deal with obtaining a referral for anything that wasn’t a yearly checkup with my general provider. And I have a single insurer, rather than feeling guilty every time I handed over my four insurance cards to my doctors (my retail employer’s scammy discount non-plan, my Medicare plan, the separate HMO for my MAWD and then the MAWD itself) and knowing the billing hell they were going through just to get payment for their services.

Alas, though: my troubles are not over. My husband’s insurer, like so many other employer-based insurance groups, has become enamored of these “incentive programs” that are supposed to, you know, “provice incentives” for patients to “lead a healthier lifestyle!” Mainstream conservatives and liberals alike seem to love these things. It’s a way to pretend you’re addressing the God-awful fucked-up shabby mess that is the American health care system and its soaring costs, but without actually, you know, doing anything to make these patients healthier. Actually paying for the health care they could use? Pfah! No, just “incentivize” them to exercise more or stop smoking.

These “incentive” programs, more often than not, do not take the form of an actual positive incentive for such “good” behavior. More often, patients feel the effect of a negative punishment for not being the Super Fit And Healthy Ideal Able Body. They end up paying more in health care premiums (by losing out on a “discount” for being a successful participant) or losing their health insurance altogether. Or, they simply feel the burden of having to jump through hoops no able-normative person would ever have to — the second shift for the sick.

These incentive programs would not be worth the money and effort if there were not a stick behind that carrot, a way to enforce good health on the people. It should go without saying: health is not something that should be enforced.

My husband’s ensurer has a yearly health survey that all participants — including every covered family member — must participate in to be eligible for the lower premium. This is not a five minute survey; it is fairly involved. And I am always nervous about answering questions from my health insurance provider: more often than not, when I inform them of this problem or that — even those insignificant in the grand scheme of things — it results in a loss of coverage, increased cost, or additional steps I must complete to continue receiving the care that I do.

This nervousness comes, especially, from my time spent uninsurable on the individual market due to preexisting condition. When I was younger, I created and held steadfast to a very important rule with my own family: Information Equals Ammunition. In the insurance market, this rule is sadly just as applicable.

Every year, after taking the survey, my husband is informed that he is dangerously underweight and action needs to be taken to correct this state of being. My husband is 5′9″ tall and weighs around 120lbs. This is his natural state. He eats a healthy diet, he walks to work and back every day and gets a fair amount of exercise beside that. He inherited his very lanky body frame from his mother, who is even skinnier than he, and jokes that when she was pregnant she never actually gained weight; at the end of her pregnancies, she looked just like she does now, but with a basketball contained in her tum.

When my husband played football in high school, he was actively trying to gain weight both through diet and muscle-building exercise — and he plateaued at 140lbs. Now that he is not weight-lifting on a regular basis, he hovers around 120lb. This is a BMI of 17.7, barely more than I weighed when I was a teenager — the difference being that I was significantly undernourished, and he was more-than-properly-taken-care-of.

So once a year, he gets yelled at a bit about his weight. He is healthy in literally every other way, his one and only health concern being a minor bit of TMJ pain which he now has completely under control. But he does not fit the widely-understood able-bodied “norm,” and so Something Must Be Done!

I take the same survey, and of course I am provided with tips for stress reduction and admonishment to see a pain specialist. I am now very slightly overweight, so of course I am also admonished to “park further away!” and “take the steps instead of the elevator!”

Recently, I have been receiving messages on our home phone from our insurance company, encouraging me to call them for the opportunity to participate in an unnamed program, for unnamed rewards. These messages piss me off, so I ignore them, even though I know there is a strong possibility that it might mean our premiums would go up. I planned to contact them at some point or another, but it was not high on my list of priorities, and still they kept calling every other day.

Then I received a letter, in a tone that can only be described as a lament, that I had not responded and would I please pretty please call them, this time finally informing me that it was for their “Healthy Back Program.” Oh great, I thought. And I caved in and called.

The woman who answered gave me the spiel I expected. And my reply, in a sweet voice, was (closely paraphrased): “Yes, I have chronic pain from fibromyalgia and endometriosis,” and she replied with a somewhat disappointed “Oh” — but I interrupted to continue: “I went in last year for lower back pain, and I spent the entire year going through various programs and treatments to help it. I had to go under for a laparoscopy which led to being diagnosed with endometriosis, and I’ve now been through physical therapy and even have a personal TENS unit to address the pain.”

“Well, unfortunately that means you are not eligible for our program, because your pain is chronic…”

Mm-hm. I am sure you can hear my disappointment.

This is the same health insurance company which paid for all these tests and treatments and has on record exactly what my condition is, what the background is, what medications I am on and which treatments I am partaking in. I provided this information in the health survey. It is very clear that I have chronic pain conditions. But because I even mentioned low back pain — a common focal point for people who like to cry about “overdiagnosis” and “overtreatment” — I was immediately flagged and referred to this oh-so-special program.

It’s just one more little thing I have to fend off to be able to continue on my treatment course. Just like every time I visit a new doctor, counselor or other practitioner and have to patiently go over every disclaimer about why I am on this Vicodin and why I have this symptom and why this and why that, and that yes I am being closely monitored by competent doctors and am following my treatment course as prescribed would you please leave me the fuck alone so we can get on with things.

And it’s exhausting, always having to be at-the-ready to explain these things. It’s just exhausting in a way that no able-normative person will ever fully understand, period, and I am confident in asserting this. It just drains you, even though each of these encounters is small and relatively easy when considered individually. But it accumulates, it weighs on you, and the knowledge that you always have more to come — that is the worst of it.

This is what people with disabilities go through in a health-obsessed culture, a culture that sees personal health as a responsibility to the collective, and any person who in any way deviates from the designated health “norm” (which changes regularly and is not as science-and-reason-based as these people like to think) is failing their family, community and nation, that they are dragging them down — being a burden.

And we all know what the result is when disability, or any health abnormality, is constructed as a burden.

From the beginning, we knew I was an artist. It has always been a part of my identity, something everyone simply knew.

I never fancied myself a photographer, though, as a child. I colored and painted and sketched; I played with ceramics and sculpting clay, with yarns and plastics and pom-poms. All of that Meant Something; it was not what I did, but Who I Was.

And yet I played with photography continually; my mother would buy a roll of film and I’d have it filled within the hour. I loved to pick up my twenty-dollar Wal Mart 35mm camera, to follow the cats around the house taking pictures. It was so satisfying, the snap and rolling noises, removing the film at the end, excitedly filling out the film envelope at the store and waiting patiently for the week we could afford to get the photos developed — then pawing through the stacks of full envelopes, and breaking the seal, the anticipation of what might lie inside…

And yet I never imagined that I could call myself a photographer. All of this, it was not Who I Was. It was just something I did. It didn’t Mean Something.

I don’t know why.

Late in high school, just as my disability was setting in, I took a strong interest in photography. I had been working with the school newspaper, which was feeding my love of visual design, which had been developing since age twelve when I got a computer and started making my own web pages. I was the tech and copy editor(s), so much of the visual presentation of the paper was in my hands. And I loved it.

Photography was something that caught my eye: the art of photography has a strong basis in design concepts, and yet it resulted in something so much more … classic. Free-standing. Boundless.

I saved money, and did research, and between Christmas, my birthday, and graduation gifts in my senior year, I was able to purchase a “prosumer” level digital camera — not an SLR, but offering many more creative controls than your typical snapshot camera.

March of 2004 is when that small black beauty finally sat in my eager hands. That same month is also when I was just beginning to recover from the most severe and serious flare I had experienced, which had me out of school for several weeks that January, then kept from attending school continuously for some time afterward. I was just getting on my feet again that March, just beginning to catch up with everything I had missed until that point, just beginning to collect all of the make-up work I would have to do to get my report card out of the F graveyard… my very last semester of school.

I took comfort in this new little device. It was something to learn which did not weigh down my consciousness, fog up my comprehension. This was not book learning; it was tactile and visual, and it came naturally, guiding the movement of my fingers and positioning of my body to obtain fresh angles, and even the mathematical balancing, shutter speed and f-stop and film speed, was intuitive.

And it cost nothing, once I had the camera. No rolls of film, no waiting for developing. Just space on my hard drive.

My camera would become my best friend as I looked ahead to college, where I was to face multiple health crises and major life changes. Whenever I was not well, I had something to take comfort in, to help me escape from hostile reality.

There is something about photography that exceeds the intellect. Oh, you use your knowledge and intellectual ability to manipulate all the mechanics and mathematics involved. But it is so much different, so far from the problem sheets of school, occupying a different space in the brain, utlizing different mental muscles. It is grounded in that intellect, but it sprouts forth and grows endlessly, obeying no boundaries, becoming whatever you wish to make it be. No intellectual space can hold the zone I enter when I have that camera in hand.

My disability does affect this art. Most so, my hands are shaky, never steady, always moving, and with occasional spasms. I had so much trouble early on, finding it nearly impossible to take pictures requiring a low shutter speed (below 1/30). I couldn’t afford the beautiful machines that handled higher ISOs gracefully, which would have allowed me to play more within this low shutter speed situation. But they were beyond my reach — still are, really.

It has taken me years to learn how to compensate for this. Years and years of failed attempts, frustration, disappointment, self-criticism. And it has come only little by little. And it is not complete.

But there is a physical knowledge there, and my muscles are being trained to hold steady in certain places, certain ways. I have learned to brace against a wall, chair, pole or rail, or even my own body. I have learned tricks: to extend the LCD screen out to the side, so that I can hold the camera at both ends, keeping it safer from unintended movement.

I cannot steady my entire body. It is simply not a trick available to me. But I am learning where to focus my energies, which muscles to use which ways.

And my photos are turning out much crisper, clearer.

This comforts me. When my art is crisp, clean, readable, I feel the same inside. When it is foggy, unfocused, poor quality, I feel the same inside. I feel frustrated at my inability to communicate what is going on inside this complex body to the outside world.

Learning how to do that more effectively… that is a life-long lesson.

This box is something I’ve had for probably 7-8 years. This cat is something I’ve had for three. The bottom of the box should have an inscription: Any resemblance to actual cats is purely coincidental.

This one is pulled up from the archives. Buddy has some Chair Time.

You know the Microsoft Minute?

A unit of time whose literal length is constantly changing due to rapid miscalculations of a computer wielding an operating system developed by Microsoft (i.e. Windows 95).

My husband had the brilliant idea to apply it to me and my various disabilities: the Manda Minute. To wit, “We’ll be out the door in five minutes!” will probably mean twenty, but it will change constantly as time progresses, and could end up being only eight minutes, or even — thought very rarely — two.

I try to be as honest as I can about time estimates, but there are so many fluctuating considerations and variables that it’s almost impossible to know for sure. I overestimate as it is, but chronic overestimation makes guessing useless anyway — if I say twenty minutes when it’s actually going to be five, what good am I doing anyone? and I’m going to be screwing with the medicine I have to plan out, the periods of activity and rest, and so forth.

Welcome to my life.