feminist blogs

I am the person who was still making up six exams within three days of her high school graduation.

I pushed myself pretty hard these last two weeks, and never quite got to the posts I was planning on writing here. :) And ended up with a couple contentious threads, leading to some, um, not so nice attacks. But I think we had several really good discussions, and I got to hear from a lot of people I hadn’t seen around much before. And I think that’s a great outcome.

Check me out at my homeblog, Three Rivers Fog. Add the RSS feed here! You can also find me on Tumblr (which is updated much more regularly than my main blog, with photos, quotes and other snippets). There are some unfinished posts from my time guest-blogging here that I’ll be putting up on 3rf soon.

This coming Friday, July 17th, is actually my second anniversary blogging in the feminist-o’sphere. I do want to take a moment to thank everyone who has stopped by to read my sometimes-muddled writing, and especially the people who have taken time to comment on it, email me about it or write their own posts in response. I love to see these conversations happening, and it heartens me to know that at least someone can see part of their experiences being represented in the larger political conversation.

I haven’t always responded to the various comments and blog posts — I am somewhat of a flake, in part because of my disability, but in part just because that’s what I am — but I do see them, I read them, and I appreciate them so much more deeply than I can express here. You are all awesome, awesome people. Keep speaking out. It is so refreshing to hear your voices. It’s what I live on.

I’ll see y’all around. Drop by once in awhile!

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

1.

Think, for a minute: visualize a disabled person. Just a generic idea of a disabled person. What would you say are the requirements to qualify as disabled?

Do you have to be disabled — in a dictionary definition sort of way? Disabled, unable, incapable? Unable to work, or unable to participate in social activities, or unable to take care of oneself? Is there a certain level of un-able-ness one must reach to qualify as disabled?

If so, what do you call the people who don’t reach that level — but who share many, if not all of the exact same problems with accessibility in society, who face the same obstacles in their path, the same ignorance and hostility? The people who have the same condition, but face different accessibility problems because they are trying to navigate the workplace, living independently — who are able to do these things — but who still have to fight with the outside world to be able to live their life how they want to?

Are these people disabled? No? Are they abled, then? Are they privileged over the people who meet that level of un-able-ness?

Am I “temporarily able-bodied” because I can push myself enough to work full-time?
Because I can walk? Drive? Prepare meals? Go to sports events and concerts?
What about the fact that I still have to fight with my doctors over medication? That I still have to approach HR at work to tell them about everything I need to be able to work there?
What about the fact that without the drugs I am taking and my TENS machine and my access to health care and workplace accommodations and accessible parking, all of a sudden I wouldn’t be able to do those things anymore?

Is my disability about my inner feelings when I get home and slouch in pain — is it about what is going on in my body? Because I still have pain, whether I am well-treated and working or untreated and housebound. I still have fatigue. I still struggle when I stand up from a sitting position, still need help getting out of the car if I haven’t taken at least a few painkillers already that day. All that stuff is still there.

Or is it that my disability something beyond me — not having to do with me at all? Not defined by what is going on inside my body, but defined by whether society is working with my body or working against it?

2.

I’m going to let you in on a secret. A lot of us people who do fit the classic dictionary definition of “disabled” — don’t feel “disabled” either. We don’t always feel un-able. We feel like “just people.” Normal people living a normal life, just happen to have some sort of neurological or physiological difference, but that isn’t our defining characteristic or something that is always forefront in our minds, it’s just one part of us that doesn’t always make that big a difference in our life at all.

3.

Remember, briefly, the social and medical models of disability.

Under the medical model, a person must justify their claim to disability. A person must fit neatly into a narrow diagnosis with a Latin-based name. The person must be cleanly categorized. Their experiences must fit a prepared check list.

The medical model says that your body fails to be normal in this particular way: so we must devise a way to force it to be normal, and that will solve the problem.

Naturally, such an approach to disability will wind up excluding a good many people who don’t fit those boxes cleanly, who appear close to normal — and that just can’t be right; there must be a logical explanation, like that they are over-worrying, imagining things, that they like being sick and want the world to treat them with kid gloves. After all, there is no proof that they deviate from the normal — so they have failed to justify themselves as different.

The medical model, in this way, denies community and services to people who still face considerable obstacles to full participation in society because they have failed to prove that they deserve that “special treatment.” They have failed to prove themselves as disabled enough. They aren’t “other” enough to be Othered.

The medical model imposes strict and narrow definitions — which become boundaries which must be policed.

What do you do when you’re caught in the middle? Different, but not different enough to be Othered, but still needing services (benefits, accommodations) which are only given to Others.

4.

Informed by the social model, “disability” becomes a marker not for condition (mental or physical) — not for “what I feel inside, what I experience inside” — but instead for the fact that our condition is maligned or neglected (or both) by the rest of society.

Disability is not a matter of my condition, but a matter of the group I am assigned because of that condition.

Perhaps it could be said as such: Disability is not a condition, it is a status.

5.

The classic analogy to explain the social model is this:

Many sighted people have less-than-perfect sight. If assistive devices — glasses or contact lenses — were not so widely available and accessible, many of these people would be prevented from full participation in many aspects of society.

But because society sees fit to prioritize this assistance, to make sure glasses/contacts are widely available and accessible so that every less-than-perfect sighted person can have clearer vision — because society decided that no person should be blocked from access because of hir different vision –  this condition is no longer a disability.

This is a useful thought experiment. But it is not a perfect analogy. Many blind people still face considerable access blocks. This only really applies to people who are sighted, but whose sight is not precisely “normal.” Perhaps because society can, for the most part, bring abnormally-sighted people to normal-sightedness, whereas it cannot do the same to blind folk.

There’s a lot to explore here.

6.

The word disability isn’t perfect. I don’t know that I would choose it, were we to start over with a blank slate. Nor do I know that most people who are active in the disability community would choose it.

What I do know is this: people who don’t feel, literal-dictionary-definition disabled, embrace the word and run with it. They can make it something all their own.

Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

I don’t feel dis-abled. I feel people-are-willfully-ignorant and access-to-good-care-is-restricted-in-unnecessary-ways and the-medical-industry-has-no-respect-for-me. Among other things.

And I’m sure other disabled folk feel why-isn’t-there-a-wheelchair-ramp-for-this-public-use-building and nobody-has-to-accommodate-my-needs-until-they-get-sued-why-don’t-we-have-an-oversight-board-that-makes-them-do-it-right-from-the-fucking-start and you-aren’t-providing-alternatives-so-I-can-access-your-lecture-even-though-I-can’t-[hear-what-you-speak/see-what-you-write/be-there-in-person-at-all]. Among other things.

People who identify as disabled (or are identified as such by society) don’t necessarily always think the dictionary definition of the word applies to them. There are disabled people in wheelchairs or braces who still work, still have families, still go to parties. There are disabled people who appear totally abled yet can’t work, can’t perform certain self-care, and so on.

The word “disability,” in the disability movement right now, already refers to a great variety of individual conditions, abilities, approaches…

And for the most part, when a person appears whose condition challenges the current boundaries of abled/disabled, the disability community is completely ready to revise their assumptions and welcome that person (and hir companions) into the movement.

Because, here’s the thing…

7.

The disability movement has a lot to offer to a lot of different people — not all of those people who may identify as disabled.

And this is part of why I do not want to pressure people to change their identification. They don’t have to identify as a disabled person, or a person with a disability, to still become a part of the disability movement, to benefit from it, to help move it forward.

What I am wanting to do is not change people’s minds about how they individually self-identify. What I want to do is explore the cultural phenomenon that is certain groups rejecting the label of disability.

Anyway: the disability movement is working hard to change the way we approach the world. From an approach that excludes non-normal people to an approach that stops INcluding by certain standards and starts just treating all persons as fundamentally human, period.

Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!”

When we encounter a person, we expect that person to be abled. When we imagine a “person” — just a generic, default person — we imagine that person as able-normative.

Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

This approach is what defines the disability movement. We want to change the world so that the world stops treating us as unexpected — and therefore a disappointment — and therefore has not prepared for us — and therefore we have to constantly fight with the world to make it change every little individual thing it has set up wrong.

This approach, applied broadly, has benefits for so many more people than only the classically, dictionary-definition disabled.

This is the world I want to live in (bold emphasis added)…

My body isn’t the enemy, I realized.

It’s not my physical self that creates all my problems.

It’s all the external expectations of it.

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

[Reading back, I cringe at the use of the words "straightforwardly lacking." Proof that we are all still learning, still building.]

What if things did happen that way? What if we just rushed to give, knowing that those around us would rush to give back?

and in this POV, the centering of individualism falls apart — because that’s not what life is about. life is give and take, push and pull, you do this for me (that i don’t do well/don’t like to do, but that i want/need) and i’ll do this for you (that i do well/like to do, and you want/need).

disability, really, when you get down to it, is the ultimate unraveling of that ball of individualism — it FORCES you to look at all these little things that go into the living of a life, and realize that not all of them are yours to do or yours to control — and also to realize how many of those little things YOU affect for OTHER people’s lives — and to finally give up, and fall back into the arms of the community.

it means you have to stop looking at things as “mine, yours, this person’s, that person’s” etc. you have to stop keeping the damn tally — and just rush to give, knowing that those around you will rush to give back…

so many people are afraid to admit that ultimately, they DO depend on the people around them, and their accomplishments are not solely their own, and the things they do, affect people besides themselves. but it’s all true! and it’s not a bad thing, if you look at it the right way.

This is everything we are trying to change.

And when we are successful: it will be good for so many people. It will benefit a great many, people who might not consider themselves part of this movement, but who will see their life become substantially easier or better, because this movement has destroyed the system that puts obstacles in their path.

8.

There is a lot people can learn from the disability movement — even if they don’t consider themselves a part of it.

This is why I, and others, explicitly tie our disability activism to our feminism. Believe it or not, there are things that non-disabled feminists can learn from disabled ones about how to refine, how to better our (not their, OUR) feminist movement.

There are things the disability movement is accomplishing that the feminist movement has fallen short on. Things that disability activists are paying attention to that feminists have forgotten.

And it makes a difference in women’s lives.

9.

There are substantial immediate benefits to individuals, as well. Many of you who do not feel “disabled” nonetheless benefit directly from the Americans with Disabilities act and other non-discrimination legislation. And that’s only in the realm of the state (legal sense).

Consider the pharmaceutical industry. The alternative medicine industry. Consider protections on health insurance that prevent companies from discriminating against people with pre-existing conditions or prevent them from denying certain treatments.

These are all things the disability movement has had part in. Often, the disability movement has been the sole force pushing for these things — when other movements fall short, and forget us.

And there is, therefore, substantial benefit to involving oneself in the disability movement. Because it is working for you. So it will do good for you and for us if you directly engage with it — help it refine its purpose — help direct its actions — help challenge preconceptions.

If you will stand with us, if you will be — a friend, or a family member — whatever role you feel comfortable taking, we will stand, sit, lean or lie beside you. We will be there with you, however you identify.

We want more people to engage with us — on an honest, good-faith level.

Some of those people will find themselves beginning to identify as a part of this movement, as a person with a disability. Some people will not, but will remain our friend, our ally.

No matter which: we are happy to have you.

***

ETA: I really should have included a link to this post from Joel at NTs Are Weird — from the perspective of the autistic community. I ain’t the only one beating this drum! I remember reading this post a long while back, and it has informed my politics a great deal. And I think it is necessary reading for anyone engaging with the disability movement. And he does a great job wrapping up the many elements of this post! ;) Take it away (bold emphasis mine):

Welcome to the disability community! [...]

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are. And, no, I don’t mean that you are less or more functional than anyone else. I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

Yep, that’s the social model. It’s not the “OH MY GOD, I AM SO BROKEN AND LIFE SUCKS AND I WANT TO BE NORMAL BECAUSE EVERYTHING WOULD BE WONDERFUL AND I WOULD HAVE LOTS OF MONEY AND A GIRLFRIEND AND A NICE CAR” view of disability. But it is recognition that we have trouble in society as it is currently set up. You’ll also notice that it is not a view that accepts society as a static, unchangeable, and morally good entity, but rather as an institution that can and should change – even when people have a hard time seeing how it could.

In addition to this, I want you to know that there is “nothing new under the sun.” You don’t need to reinvent disability theory [...]

One example – although the victory isn’t yet fully realized – find out why there public transit has to at least make *some* effort at accommodation in the US. Yep, I know it still sucks, and there are tons of problems – I’m not saying anything different. But I can assure you of this: Without good advocacy, there wouldn’t be a wheelchair lift on any bus except one owned by a nursing home – and even that one might not have one.

Find out why people with cerebral palsy can go to US schools today, even if their natural speech is hard to understand, thanks to assistive technology and good law. Sure, schools, technology, and law aren’t good enough yet, but they are way better than they were 40 years ago. Why?

Better yet, learn how you can make a bus in your city more accessible both to yourself and to someone with a different kind of disability. Learn about your schools and what can be done to help others with disability. Not just autistic people, but people with all types of disabilities. Do you know what you will find if you do this? You’ll find out quickly that it also helps you, even if that wasn’t the goal of the movement.

For those of you who are already doing these things – thanks! It’s good for us to stop reinventing the wheel once in a while.

***

ETA 2: I will be moderating this thread carefully. I want people to be able to explore their feelings about their own identity and how they percieve disability without having the conversation taken off-track into pre-101 territory.

I know some people don’t like my moderation, but y’all have enough space to air your thoughts elsewhere. This is my space, and I am making it comfortable for a set of people who end up pushed out the door by the usual open-moderation type discussions. That’s my decision.

To potential commenters, I want you to explore how you feel openly. This is why I will watch the thread closely. The comments that get taken out will be the comments that make disabled people — and people who are close to the disability movement — uncomfortable discussing their feelings. This is my way of protecting this space for those commenters. People who come in good faith and who do not use oppressive language and concepts will be welcomed.

Oh, this post has been a long time coming!

2008 was a rough year on me. That January, I began having persistent lower back pain that did not go away like most pain flare-ups eventually do. I went to the doctor, and I was sent for x-rays and ultrasounds, then scheduled for a laparoscopy to confirm the condition that we pretty much knew I had for five years previous to that, but which no doctor ever saw fit to address. (On resolving open questions)

Hindsight, etc. We now know that I have fibromyalgia (dx age 12) and endometriosis (dx March 2008); that endometriosis is diffuse, all over the organs in the pelvic region, particularly on the back of my uterus. Some of it is new, but much of it is scarring  from old endometrial implants back when my hormones were left uncontrolled (estrogen is what feeds/flares/inflames the endometrial implants) because none of my doctors thought “pain so bad I couldn’t sit upright the first day and couldn’t walk completely upright the whole week” was something that really merited any attention. It caused pain throughout my life, but for whatever reasons, it significantly worsened that January — setting in for good, no longer an occasional visitor but now a permanent fixture.

I went through two treatments that year: six months on Lupron Depot, a GnRH antagonist which stops the body’s production of estrogen, inducing what is basically menopause; and physical therapy, for several months late that summer. The Lupron results were mixed, while the therapy was generally helpful.

My physical therapy included heat therapy, stretching exercises, resistance exercises, heat ultrasound, and electrical stimulation. I have heat at home, I can do the exercises at home, and I always felt a bit worse at the end of the ultrasound anyway.

But the electrical stimulation — I was surprised, but it made such a difference. I attended therapy three times a week, and I got twenty minutes to lie back on the moist heated pads with the electrical stim going. I’ve been using heat as part of my pain management ever since I realized I had chronic pain — I know what it feels like and how it affects my body, how it helps and how much. Adding the electric stimulation, though, really seemed to soak the pain straight out of my back. I was able to perform the exercises less inhibited, and it seemed to keep the pain level down overall, even outside therapy.

My therapist told me, at one point, that there were portable versions of the giant machine that got wheeled up next to my old-school exam-room-style bed, for personal, individual use. And later let on that it was even possible my insurance would pay for one. And that they had one available for patients to take home and try out for a week to see if it worked well for them.

So I tried it. And it’s not like it was magic. There are so many parts to my pain management routine, by now, that even though some of them are amazing, they don’t overwhelm the whole picture. But it provided solid pain relief in a way that reduced the amount of narcotic pain killers I had to take to control the breakthrough pain (pain you still get despite everything else in your treatment plan). And it was something I could take with me, and use, pretty much anywhere in any way. Except, you know, swimming.

(My husband and I spent a week in a cheapie room on the beach in the Outer Banks for our anniversary this year — it was a bit too cold still to be able to play in the water, but the beach was gorgeous. And I say this as a Pacific beach snob. But I wanted so much to wear my TENS when we went on our walks down the beach, but I was in a bikini and near water, not to mention what if it gets dropped in the sand — too risky. The thought of walking along with the electrodes and lead wires hanging off my back, in a bikini, though, was tempting.)

TENS stands for Transcutaneous Electrical Nerve Stimulation. Basically, you attach two or more electrodes to the skin (wherever, with certain important exceptions) and connect them to a device which delivers electrical currents through the skin. Electrical stimulation is thought to work by blocking or replacing pain signals before they travel through the nerve to the brain. It also stimulates endorphin production in the body, among other things that help reduce the pain level. The science is here if you like that kinna’ stuff.

Portable TENS units allow a person to take advantage of this pain relief without being tied to a gigantic machine. Which means they can go about their life, doing just about anything with the exception of driving (you can wear the TENS, but it needs to be turned off) and anything that would expose any of the components involved to water. Apparently there is some suggestion that TENS may even help labor pain.

The old-school versions may be cheaper, and found online. They’re usually analog (no digital screen, or only a readout screen), square with a couple knobs/wheels on the top to control the level of stimulation on each channel.

The newer things are damn expensive, though, which means that they are only an accessible solution if you are insured, your insurance covers them, and you can convince your insurance it is medically necessary. My doctor was extremely cooperative; he knew to document my condition before, during and after use, making it hard to ignore that there was an obvious improvement in my physical condition. He knows how the insurance companies work, and how to make sure they work for his patients.

Damn, I hate insurance companies. (Ahem.)

But they did end up paying for mine (after several months rental period, several visits and forms and and hoops to jump through). This is where I am extremely lucky that I am married to a man who works for the state. Because they give pretty good bennies. Not the gold-plated stuff your six-figure-makin’ elected officials get, but good enough that I know exactly how fortunate we are to have it considering the wider economic conditions.

I spent my time un- and under-insured, and uninsurable. I spent my years paying for my medications out of pocket, draining my small savings. I spent a couple years on Medicaid and a couple years on Medicare. I’ve been through the range, at this point, throughout my life. So I know well that I am privileged in this way. Cuz I’ve been on the other side of it.

And it’s kind of fucked up that anyone’s access to health care (that works) is predicated on whether, and whom, they marry.

Ahem. Anyway.

I started my first full-time job at the end of 2008. I’d never worked full-time before, or at a desk job. I started as a restaurant greeter and then moved on to retail, canvassing, and more retail. You know, you start low and you work your way up. Well, I started with six hours a week showing people to their tables in a one-step-above-fast-food breakfast restaurant and worked my way all the way up to a starting clerical job with the state. I was so excited and so fucking proud of myself.

Most of the people at work, after a short time to get to know me, would exclaim that I should apply to (a higher status job), that I was obviously smart enough to be able to do the job and I worked well and I’d be a shoe-in. What they didn’t understand is that this was it. I already climbed my ladder, and this was the top. And I was extremely happy there. I wanted nothing to do with (that other job). There were parts of it I know I would hate doing and didn’t feel particularly suited for. I’m comfortable alphabetizing files and doing data entry. I don’t think it’s “below” me. I think it fits me perfectly.

But clerical is lower in status, and (that other job) is a sign of a Better Worker or whatever, so obviously I should do that, I should keep climbing, I could end up a supervisor someday, you can go so many places… but I didn’t want to go anywhere else. I chose where I was because I knew it fit me, and it did, and I wanted to settle down there.

This is the reality of my life.

Working full-time was a huge stress on me. I had to get up two hours early, only 30-45 minutes of which were spent half-conscious and doing my hygiene and preparation to go out the door. And then I would get home from my eight-and-a-half hour day (hour lunch) and I’d only be able to stay awake for maybe three more hours before I just didn’t have the strength, and I would crash in bed. And those three hours — some of them were spent undressing, destressing, eating dinner, spending time with my husband, with my cats — I ended up getting about an hour a day of time that I can say I was mostly alert, cognizant, and able to read a little bit of news and blogs and communicate a little with my friends. One hour per day that wasn’t devoted to eating, sleeping, hygiene or working.

I managed to make it through, mostly with the knowledge that I got the summer to recover (my job is seasonal). I push myself to work hard so I can manage a 37.5-hour week — no benefits, no  time off, nothing, since it’s not a year-round permanent job — push myself through five months of that, and take seven months of rest to balance it out.

The one biggest factor in my ability to actually make it through those full five months was my TENS.

I wore it every day, for the duration of my workday.

Here’s what went in to using it:

Putting on the skin prep, attaching the electrodes and trying to find the right places, changing out the batteries and so forth was part of my morning routine, and taking off the electrodes, removing any remaining adhesive, and treating my back so my sensitive skin wouldn’t break all over the place (making it impossible to use the TENS again until it healed, which with my skin is an excessively slow process) — that was my after-work routine.

Skin care was essential for me. I had to make sure to remove the adhesive residue (they provide pads of adhesive remover). Then wiping down my entire lower back with witch hazel, then carefully applying Sween cream (a medical-use moisturizing lotion that doesn’t make it impossible to adhere anything the next day) and some sort of product to calm the itching irritation (I’ve cycled through several, including the Bikini Zone cream with lidocaine, which seemed to work particularly well — now using a Bactine lidocaine spray, hoping the antiseptic in it helps the healing of any small skin breaks that show up).

Oh, and only use the specialty sensitive skin gel electrodes — regular electrodes are gonna rip up my back no matter what I do after.

And I’ve had to learn extreme self-discipline in not scratching my screaming itching skin when I miss any part of that routine, because even very slight rubbing will break that irritated skin.

That’s just what works on my skin. My skin is particularly sensitive in its own particular way. Most people do not have skin like mine. And even people whose skin is also sensitive may respond differently to different products, may not need as much (may need more) and so forth…

It takes three AAA batteries; I was provided with a set of rechargeable batteries and a charger, but given my background in camera sales, I know that most cheap rechargeables are more of a pain in the ass than they’re worth — they drain quickly and die just as quickly. At the time (I’m not sure what’s true now) the silver-and-green Energizers were the best-performing rechargeables, so I bought a bulk set off eBay for cheap.

I keep a set of batteries charging at all times, so I can rotate them out. Generally, a new set of batteries, freshly charged, will last a full day. Now that I’ve had them for awhile, they tend to last up to a full day, sometimes draining about 3/4 of the way through the day. So I keep a set of three newly charged spare batteries with me when I’m out somewhere for a whole day, too.

(The Energizer Lithium AAAs are also excellent, but they annoy me because they don’t work well with the battery monitor on my particular TENS unit; they’ll show totally full for days and then bam, they’re empty all of a sudden. It makes it hard to know when to be prepared for a change, which I need to be able to monitor ongoing. The rechargeables, OTOH, generally give you a good idea how much power they have left in them on the battery monitor.)

And here’s what came out of wearing it:

Where back pain formerly prevented me from performing certain activities — particularly anything involving bending or kneeling, lifting, extended reaching, and even just the pain and fatigue that sets in during the afternoon from having been standing/sitting upright for hours at a time — the TENS provided relief, allowing me to go about my day without those activities weighing heavily on me.

It did not, and does not, cure overall pain. The feeling is hard to explain; it zaps the muscle underneath your skin, and you feel that “zap” in the areas where the electrodes are attached — and the “zap” feeling seems to replace the “pain” feeling (rather than removing it altogether). The device I was given has several different modes which provide different patterns of zaps, rolling and building in different ways.

When your back pain is really bad and you get the electrode placed really well on a tender point — oh, it feels so good. It’s a similar sort of relief you get with a really, really good massage. It’s not just taking away pain; it’s almost pleasurable in doing so.

When the back pain is moderate or mild and there aren’t any particular tender points (or your skin is broken in those areas, preventing you from using the electrode on them) it’s not quite pleasurable, but it still takes the pain away, replacing it with a sensation that’s at least neutral.

When it’s working really well during those times, I forget that it’s there and running. I can just move about and not think about the pain at all. That’s a freedom I cherish when I realize it’s happening. It’s not often I can just move my body without realizing the pain I’m in and having it limit what I’m able to do.

Wearing the TENS is what allows me to be at work for eight and a half hours a day — even when much of it is spent sitting in a chair. I have a lot of things to take care of at work, and if my back pain is distracting me, I have a lot more trouble getting them done, and getting them done right. I take longer, I need more time to rest, I’m stressed and irritable and easily overwhelmed. This is something that allows me to take one complication out of my day.

Wearing my TENS is what allows me to do a lot of non-work things, too: washing the dishes at home, for instance (standing upright but doing something physical slightly in front of me requires use of my lower back muscles, which don’t hold up for long in that situation), or attending a sports game or going to a museum or zoo, or anything else where I am going to be away from home for a good portion of the day, especially standing or walking, or sitting where the seating is awkward.

Without my TENS, I would be taking more pain killers to manage my pain. With the TENS, I only need pain-killers for other areas of pain: my severe headaches, or the over-all neuralgia ache and fatigue. If I’m fortunate and those things aren’t bothering me that day, I’ll have less need for the pain-killers overall.

My TENS unit can be a stealth device. No one necessarily sees it. Sometimes I tuck the wires in to my pants or skirt so that they are hidden, and sometimes I don’t bother, letting them hang out — leading out the back of my pants/skirt to a pocket on my side.

Here is where I make a recommendation: of all the ways I’ve tried carrying my TENS, my favorite is the Cargobelt from Etsy seller Utilitywear. I have tried several ways of carrying my TENS unit: with the included clip alone, in the black canvas carrier the company gave me with the unit, in my jeans/skirt pocket, and with a couple different solutions I found on Etsy.

I ended up removing the clip from the unit; I didn’t like the way it sat high on the clip, making my outfits look weird (I wear mid-rise jeans and prefer my shirts to fall around the hip, covering a few inches of the jeans) with the shirts pulled and bunched up on one side. And it didn’t clip well to the pockets on my work pants/skirts. The black canvas carrier doesn’t really fit it well (a bit too small), is ugly, has the same shirt-bunching problem to a slightly lesser extent, and isn’t convenient — I have to pull the unit all the way out of the carrier to adjust the mode/levels, and it’s a bit of a struggle to get it in and out of the carrier.

When I’m lazy, I’ll still just stick the TENS unit in my pants/skirt/shorts pocket — particularly on the guy’s cargo shorts I wear, since there’s more than enough room in the pocket. But on my jeans and skirt, it’s a bit uncomfortable due to the size of the unit; it presses in to my hip and leg and when I’m sitting down, it’s hard to get it in and out of my pocket if I need to adjust it.

But the best option for me so far has been the Cargobelt.

I bought it in the dark denim; it is available in several different fabrics. It links through the belt loops on your pants like a belt does.

I ended up making a couple modifications after using it for a little while.

Obviously, I am no professional seamstress! But I was able to make the changes I needed. I used my x-acto knife to cut a couple small slits in the back, then went and stitched over the edges of the fabric to prevent fraying. This way I could thread the lead wires through the back of the pouch, and attach them to the TENS unit inside. This was more comfortable than just tucking the unit in to the pocket with the lead wires hanging out the front. (I was originally wearing the pouch on one side, and made the slits you see with white thread, then switched to the other side, so I made the slits you see in black thread. Nobody sees them, so it doesn’t affect the glamor ;))

The only thing I don’t like about it is that the metal hardware controlling the adjusting belt — that metal rectangle thing — is a bit taller than my belt loops are, which requires some work to get it through the loops (rather than just being able to pull it through without issue). But that is my only complaint. Otherwise, this little pouch works beautifully — it allows me to walk around with my TENS unit without being too conspicuous.

And when I’m doing something like, say, traveling into the city for a sports game, it’s nice because I can also carry my ID, credit card &/or cash, my chapstick and my phone — voila, no purse necessary! Except that I have learned — ahem — that when I do have a large purse, security guards at the ballpark or hockey arena don’t bother to pat me down (instead just looking through the purse), so as long as my wires are tucked in I can get inside without any questions about this-weird-electronic-device-that-might-be-mistaken-for-something-sinister. Sneaky.

When I first began wearing the TENS, I was careful to tuck in my wires. Since then, I’ve stopped bothering most of the time. I just let them hang out. Part because it’s easier on me that way — less hassle — but also part out of a desire to have a visual marker to the world that I am Different. That there’s a reason I’m walking slowly or sitting down — or when I’m well enough to pass as one-hundred-percent Normal, to try to buck that image.

Identity is a complex thing for a person with an invisible disability. There is always that voice in the back of your head, reminding you that most of the world still thinks you are not sick — you are normal — nothing’s wrong with you — you’re making it up, imagining or exaggerating things, or looking for things to complain about. I have been pushing back against this voice for years, connecting with the still small voice inside that tells me what I am actually feeling, rather than always looking to fit my feelings within the boxes the outside world provides me — learning to just be what I am. To accept what I feel. And it’s only when I connect with what’s actually going on inside my body that I can address the problems effectively. When I  am still in the frame of mind that says my self experience is not valid, that I need to conform to what the world tells me I should be — I address the wrong things, in the wrong ways, and end up making my situation worse in a variety of ways.

I’ve had years now to gain experience in fighting that back-of-the-head voice, and reaching for the still-small-voice inside me. I am fairly stable in my identity, fairly confident in who and what I am, I trust my own feelings now. But that voice is still there in the back of my head — it always will be, as long as people still remark about people like me as though we are malingerers.

I leave my wires hanging as a way to combat that voice. As a way to say to the rest of the world: I am Disabled. I am Different. You need to face up to that. You need to deal with that.

Most of the response to my TENS was while I was working. I needed to tuck in my wires because of the bending down I had to do for filing — the wires would catch on the back of my shoes, and they would pop out, disconnecting from the electrodes or pulling the electrodes off my back altogether.

But sometimes the electrodes caught on the hem of my pants, or the wires shoed a little bit, or someone saw me messing with the unit. And they would ask about it and I would explain. And most people regarded it as: something cool, neat, and nice to know something was providing me relief. And usually, they’d leave me alone about it afterward.

(One woman did bring it up a little more often than I was comfortable with — sometimes I get tired of answering questions or making small talk about my illness. But it was only borderline, and I loved working with her otherwise, so it was easy enough to get past.)

Besides that: most people don’t bother me. And I haven’t even gotten any weird looks — I mean, I was hoping for at least one, to balance out all the glares I get when I use my accessible parking placard. Maybe in time?

Overall, even with the additional skin care routine, the addition of the TENS unit to my pain management program has made a bigger difference in my quality of life than just about any other component — only a couple of my medications might be more important. It gives me a non-drug option for managing pain and it drives me to do more physical stuff that I couldn’t do as much before. It’s one of those things that I like to have, that I’ve grown fond of, because of everything it has enabled me to do. It seems Goldfish feels similarly, because she’s even written an ode to her TENS machine!

Ode To My TENS Machine

I want to tell the whole wide world about my darling TENS,
My little matt black box and I are very special friends.
He stays close to me all day long, he never leaves my side,
I tingle when I feel those soft electrodes on my thighs.

He came straight to my rescue when my agony was heinous.
My love for him is deep; in fact it is quite transcutaneous.
This love it has no side-effects; those drugs can be so icky,
Though when I pull the patches off he leaves me rather sticky.

I knew that it was meant to be as soon as I first saw him,
He stimulates my nerves so that I produce more endorphins.
He stops me curling up with pain; he stops that horrid spasm,
Alas however, he falls short of making me [feel any better than as I have described above]

He is the answer to my prayers; the dream I have been chasing,
After just a week he needed his battery replacing.
However much my body aches I know he’ll make amends,
My love, my life, my tingly-wingly, darling little TENS.

Indeed!

Recommendations, again: Empi handled all the insurance claims, supply orders and so forth; they’ve been extremely helpful through the whole process, and made it much simpler and easier on me. And, again, check out utilitywear on Etsy; there are several options and they work great whether you’re wearing a TENS or just want a way to tote around a few essentials without carrying a bag. The Rehabilicare ProMax is my particular machine model; the Empi rep tried another one on me (the traditional knobby black box kind) but I maxed it out at 100% and it was still at a pretty low buzz level for me, so he handed me the ProMax instead. It’s been in my hand ever since.

Skin care: Skin prep before and adhesive remover after (both provided by Empi), Sween cream, something containing lidocaine (a numbing agent) — I’ve liked the Bactine spray and the Bikini Zone cream in particular (yes, that’s a bit of an off-label use, but it works!). I’ve tried other numbing agents, cooling sprays and itch relief sprays/creams/gels that just didn’t work well for me for this purpose.

If you’re in physical therapy and you think it might help, ask your therapist if you can try electrical stimulation. That way you get an idea on how it works for your needs without having to rent the machine first. Your therapist should have further information if it seems like something that could help you. Or make an appointment with whichever doctor you see to manage your pain.

The Chicago Reporter did an investigation revealing poorer ratings for majority-black homes in Illinois than majority-white homes:

An investigation by The Chicago Reporter found that Illinois is arguably the worst state in the nation for Black senior citizens seeking quality nursing home care. There is just one home in Illinois rated “excellent” by the federal government when more than 50 percent of the home’s residents are Black. In Illinois, these facilities get the worst federal ratings and on average have more violations than facilities where a majority of residents are white. And in Chicago, on average, these homes have more medical malpractice and personal injury lawsuits. People in white homes got better care than those in Black homes, even if both were poor.

The Reporter also found that the staff at Illinois’ black nursing homes spent less time daily with residents than staff at facilities where a majority of the residents are white. Of that time, Black residents got a smaller percentage of time with more-skilled registered nurses than facilities where the residents were white [...]

The Reporter analyzed the records of 15,724 nursing homes listed in the federal Nursing Home Compare ranking database to determine if disparities existed in the quality of care. The overall rating is based on a combination of health inspection results, staffing levels and how well each home performs on 10 important aspects of care, like how well residents maintain their ability to dress themselves and eat. The database includes homes that get some of their money from Medicaid or Medicare, more than 95 percent of all nursing homes.

The Reporter found that in Chicago, the worst rating—a one on a five-point scale—was given to 57 percent of Black nursing homes, compared with 11 percent of white nursing homes.

Excellent ratings were given to no black homes in Chicago and 29 percent of all homes with majority-white residents. White seniors had qualitatively better nursing home options than Black seniors—in some cases, even when facilities had the same owner [...]

The Reporter analyzed the ratings for Chicago homes where more than 75 percent of residents’ care was paid for by Medicaid. A quarter of white homes received an excellent rating, compared with none of the black homes. More than half of the Black homes received the worst rating, while 8 percent of white homes earned the same score [...]

“That’s blatant racism,” [state Rep. LaShawn Ford] said. “A lot of the times the owners of these nursing homes treat them [just] as a business. It has to be more of a mission than a business.”

It should be surprising, but it’s not. In just about any way you can identify, it appears that black people are receiving worse care than white people. We can talk about the causes — the value society has placed on particular qualities in a person, the significantly worse performance of for-profit homes — in this case, it even appears that the systemic effect of poverty (which black people suffer under disproportionately) made no difference; poor black people still received worse care than poor white people.

We can talk about support for independent living for people with disabilities, but that is a point where poverty — especially poverty extending deep into a person’s family, rather than individual poverty — would come into play and negatively affect people of color disproportionately.

Research has also shown that black patients receive worse medical care than white patients (this article focuses on diabetes care in particular; I am fairly sure I have seen research that demonstrated similar disparities in hospital care).

This is white privilege: even when you are aging and/or disabled, with all the trouble society gives you, your racial background is still giving you a hand up over those who do not share your privilege.

Thanks to Anna for the link.

(Cross-posted at Three Rivers Fog)

I took the kitties in for their yearly vaccinations this week. Buddy needs to be vaccinated because his immune system is compromised; Mitsy needs to be vaccinated so that she doesn’t catch the virus from her brother. So I always get nervous around this time of year. (You can read their story from last year.)

The vet had nothing but complements for the two of them. Buddy, in particular, always gets exclamations of surprise for his coat, which is medium-length, thick, and soft like flannel. (Mitsy’s fur is long and soft like silk. I love petting both of them at the same time.) He’s doing beautifully, now three years and three months old and healthy as can be. We hope he will stay with us for many years more.

They screamed the whole way to the vet’s office in the car — but as soon as we entered the door, they shut their traps — because there was another cat there already yelling louder than both of them. They behaved perfectly for the vet, then started screaming at me the minute I took them back to the car. Brats.

Mitsy immediately ran off to clean her leg where she received one of her vaccinations.

I decided this week to dig up an old-school picture of my dog, Rainey. She lives with my mother in California — we could bring the cats over to PA to live in our apartment, but not the Chow-Chow/black Laborador mix. She’s an absolute sweetheart (with a black-spotted tongue!), and a handful of Mom’s friends and acquaintances have threatened to steal her. I miss her a lot. We haven’t been to California since we got married just over two years ago, and probably won’t be able to make it for at least a year more.

(Yes, I blinked.) Helping Mom plant some flowers in front of her house, back in 2004.

(Cross-posted at Three Rivers Fog)

The title of the press release: “Promiscuous men more likely to rape”

The title of the Telegraph article: “Women who dress provocatively more likely to be raped, claim scientists. Women who drink alcohol, wear short skirts and are outgoing are more likely to be raped, claim scientists at the University of Leicester.”

The researcher who was interviewed spoke out about the misrepresentations of her work (she is an MSc student and this was her dissertation, which is also apparently unfinished).

According to current.com, the article has been pulled and corrections have been issued. It’s hard to see how they can explain away something like this.

The Bad Science blog offers this update:

Via @jackofkent, here are the articles Richard Alleyne of the Telegraph has written about recently. I’m not saying anything. I’m just saying. Is all.

www.journalisted.com/richard-alleyne

From Pharyngula. H/T hearshot

(Cross-posted at Three Rivers Fog)

I, and others, have been mulling over how to refer to people who are not disabled. Roughly, our options seem to be:

* normal, or non-marked identity: centering a certain body/mind as “normal” necessarily implies that any difference makes a person less than. It tends to imply that “normal” is accepted as good, whole, while non-normal is bad, wrong, diminishing.

* able-bodied, which seems to be the settled-upon term: excludes people with non-physical disabilities — and I have had so many people write me expressing that they feel their non-physical conditions didn’t “count” as disability, and it just makes my heart cry.

* temporarily-able-bodied: I love this term, because it makes clear: at any time in life, you may become disabled, due to age, injury, late-manifesting genetics, or social barriers. Your privilege will not always be with you, so pay attention, because you might find yourself on the other side of the fence at any point. But this still centers physical disability and excludes non-physical disability.

* neurotypical, physiotypyical: NT is a term used in the autistic community to describe persons whose neurological makeup conforms to the expected norm, but it doesn’t describe conditions which are not neurological in nature. Physiotypical might cover those conditions, but it requires using both terms, and still may not be truly comprehensive. I can’t come up with any good, comprehensive word to describe the range of disability (mental, physical, neither/both) to use as a prefix in place of “neuro-” and “physio-”.

* normative: I like this term because it emphasizes the social conformity rather than some inherent difference; think heteronormative. I just can’t find a good word to combine it with to describe the category of ability rather than heterosexuality.

* non-disabled: functional, but we tend to want a specific term to describe the privileged category — which is why trans community members came up with “cis” to describe people whose gender identity is consistent with their assigned gender.

* abled, fully-able: I have been leaning on these terms as the most neutral of the set of options, but they still just don’t seem to describe what we’re trying to describe — and referring to an able-privileged person as “fully able” may be inaccurate; ability is not a binary.

I think, though, I’ve finally settled on the term I’m comfortable with: Temporarily Non-Disabled.

This harnesses the power of temporarily able-bodied but without excluding non-physical disabilities. And it is a longer term but easily condensed to TND. We’ve got enough acronyms going, so why not? And I’m actually rather excited — this is a language quirk that has bothered me for some time, so having a term that seems to fit right is a considerable comfort to me.

Thoughts? People with disabilities — of any sort — please feel free to comment. Does TND seem like the best choice to you? Do you see any problems with it? Do you prefer something else? What makes the most sense to you?

(Cross-posted at Three Rivers Fog.)

ETA: Anna points out in comments that this is somewhat US-centric: UK disability advocates tend to use “disabled person” and “non-disabled person” as opposed to “person with a disability” or “person without a disability” (people-first language). And other countries may have different approaches as well. Something to keep in mind.

ETA 2: Many people in comments bring up the word “currently” in place of “temporary” and most people seem much more comfortable with this terminology. Currently Non-Disabled/Currently Able? It fits just as well for me – read through the comments to see what other people are saying. It’s a great thread so far.

ETA 3: anon in comments: “So it seems to me we are often referring to segments of population that are not merely “undisabled” — they are actually ENabled by the social constructs that are not merely neutral but support their particular conditions.”

I want this to be a safe commenting space for people with disabilities. Non-disabled people, please respect the words of PWD and avoid denying a person’s feelings and experiences. You carry privilege, so step carefully, and listen carefully to what people are telling you. I’m not afraid to break out the pandas again for unacceptable comments. Thanks.

And according to the New York Times, the FDA

… is not required to follow the recommendations of its advisory panels, but it usually does.

Emphasis mine. In other words: the ball is rolling.

Vicodin and Percocet are two commonly-prescribed narcotic painkillers. They combine hydrocodone or oxycodone (respectively), the narcotic agent, with acetaminophen, brand name Tylenol.

Acetaminophen is coming under fire because abuse of the drug can lead to liver damage. The safe limit for acetaminophen has generally been regarded as 4,000mg per day. That translates to two extra-strength Tylenol (500mg each), four times a day (eight pills total). The dose of acetaminophen in various combination drugs varies, usually 325mg but ranging up to 750mg.

The panel voted against a ban on over-the-counter cold, flu and sinus relief medications, the vast majority which contain acetaminophen. Apparently these medications aren’t a concern, despite containing just as much acetaminophen and being available over-the-counter, where consumers do not have a doctor and pharmacist counseling them on how to take the medication.

This is not to deny that many practitioners — including, infamously, dentists — throw out prescriptions without a second thought. But the number of such practitioners is much lower than commonly perceived, and restrictions on narcotic painkillers will have a negative effect on chronic pain patients, who have to jump through an increasing number of hoops to obtain effective treatment.

I’m sure many people will jump in the comments to “inform” me that narcotic use for chronic pain is dangerous and inadvisable. This is simply wrong; when there is a medical professional overseeing a patient’s pain management regimen, carefully monitoring the use of such drugs, these pain killers can make an enormous difference in a patient’s quality of life. Dosages will have to be watched, as patients develop a tolerance to narcotics over time, but this does not preclude the use of narcotics whatsoever.

In medical terminology, there is a distinction between addiction and dependence. Generally, addiction occurs when a person takes a drug for which they have no medical need, whereas dependence is a patient taking that same drug for a medical purpose. Another way of putting it is that an addicted person uses a drug to escape from life, whereas a dependent person uses a drug to get on with their life.

With knowledge of the potential for dependence in mind, painkillers are a viable treatment option for chronic pain patients. Many patients do not respond to other available treatments (whether pharmaceutical or otherwise), or they do but those improvements ultimately still leave them in considerable pain. The range of available treatments today may not work for every patient — there may be other conditions and considerations that would make one drug dangerous, or another drug might trigger severe side effects, or another drug may just plain not work for them. Every body is different; every person’s body chemistry will interact differently with a certain drug. Considering this, it is important to leave open the option of using narcotic painkillers for chronic pain patients.

They are, obviously, not a first line treatment! Trust me, we know that. But that doesn’t mean it cannot therefore be an available treatment at all.

One article attempts to assuage the concerns of such patients, in a somewhat patronizing tone. A doctor says that practitioners can simply prescribe acetaminophen-free narcotics and advise the patient to take a Tylenol with it. If a practitioner is going to advise that much to a patient, why can’t sie just advise, “Don’t take more than X per day, and check with us before taking any over-the-counter medication,” in the first place? If it’s as simple as telling a doctor to advise a patient on how best to take the medication — why can’t they just do that, instead of taking away an important treatment option for patients?

It is telling, I think, that they voted to ban the pain killers but not the Nyquil. They see narcotic users as other people — the poor people, the drug addicts and traffickers. But the family next door uses Nyquil. The family next door is trusted to be responsible. The Other People are not.

I have been using Vicodin as a part of my pain management routine for almost seven years. As I wrote in a letter to my doctor earlier this year:

The adjustments we made to my other medications were the driving force behind my ability to take on an increasing amount of work – from six hours a week as a restaurant greeter when I met [my doctor], to 20-30 hours a week retail sales, and now to a full-time nine-to-five clerical job. Up until two months ago, for all the change that I went through physically, my hydrocodone usage only went up a small amount – from 1.5/day average to 2/day average.

And I do not rely solely on medication to treat my pain and fatigue. I practice good sleep hygiene: I make sure to go to bed around the same time every night and wake up around the same time every morning, allowing myself 8-9 hours of uninterrupted sleep. (I know that is actually more than recommended for healthy adults, but because research shows fibromyalgia symptoms seem to stem from an interrupted sleep cycle, making the sleep less restful, I need a little more to make up for it.) I make my sleeping environment comfortable in terms of light, sound, and temperature. I maintain a very careful balance of physical activity and rest. I do my best to get light but regular low-impact exercise – I’ve done everything from light walking to weight lifting to Pilates. I am careful to identify things that trigger pain, such as clothing that is too restrictive around the shoulders and hips or certain chemical odors, and then eliminate them from my life to whatever extent possible. I have been through cognitive-behavioral therapy; I have been to stress-management workshops; I know breathing exercises and other coping strategies. I have an entire collection of heating pads at home – portable ones, electric, moist microwavable pads – which I use quite frequently. Dr. H recently helped me procure a TENS unit to treat my recurrent back pain, which has been the single biggest factor in my ability to work this new full-time job. It reduces my pain significantly and thus reduces my use of the pain killers.

I have also tried a variety of other techniques and treatments that just ended up not working for me. Those listed above are those that turned out to work, and each is an important and indispensable part of managing my chronic pain.

Vicodin is only one part of my pain management routine. But one that would significantly affect me if it were taken away. I would have to quit my job. I would do a lot less work around the house — and my husband already does more than half, even when I’m not working. I would be confined to my house, as the amount of trips outside (grocery shopping, doctor appointments, etc.) would be significantly harder on me. As I explained a bit further down in that letter:

I explained to him that, for everything my other medications do for my pain, there are many times where if I want to be able to get up and do something, I need the pain killers. It not only kills the pain, so to speak, but it gives me energy – to try to describe it more accurately, it lifts a weight from my body, so that I can move more freely. Without it, unless I have been doing absolutely nothing but resting for days previous, just moving, lifting my legs and reaching my arms and pushing my body through the air, is cause for a sort of generalized, all-over ache. I feel it in the skin and muscles of whichever part I am trying to move. With the pain killers, that feeling is gone. I can stand up and walk; I can reach to take something off a shelf; I can write; I can lift and carry, and the only pain I will feel is if I actually do strain anything unnaturally.

So whether I’m wanting to fill the cats’ dish with kibble, or gather my dirty clothes to take down to the laundry room, or go out to the grocery store for some milk and bread, I need those pain killers. Whether I’m wanting to sit in the shower for fifteen minutes, or dry my hair, or prepare myself a meal, I need those pain killers. For these activities, I don’t need them every time. But I also cannot go without them every time. I need them some of the time, to keep that careful balance so that I am not so overwhelmed with pain that I find myself unable to do those things at all.

You can see how this would extend to work activities. If I want to get myself ready in the morning so that I am presentable and professional; if I want to alphabetize the files and begin to put them away; if I want to walk around to the various places I need to go inside my workplace throughout the day, fetching applications and delivering mail – to do these things, I need the pain killers. And because this work is regular and sustained, I will need them more regularly than I do for the home care tasks mentioned above.

This letter was written after a nasty incident with another doctor in my clinic. She gave me all of twenty seconds to explain why I was there before launching into a very loud diatribe about how I was crazy and ruining my life, and she was going to send me to rehab. (If you want that story, it’s highlighted in blue here. The yellow blocks are the purely-necessary background, since the letter is so long.)

That left me with no option but to go to the emergency room to ask for a Vicodin script. The experience was humiliating. Nurses outside my exam room joked to each other “We should put a sign on the door that says ‘We are all out of Vicodin, go somewhere else.’” The doctor who saw me gave me a long and patronizing lecture, telling me that I should be seeing a pain specialist and not having my primary doctor coordinate my care, guilting me for using the stuff at all, with many dramatic sighs and furrowing of the brow.

Before he gave me my prescription, I asked if he had a recommendation for a pain specialist, and he gave me one. I called them up. They requested that I send over my medical records before they would make an appointment, because the doctor sat down to read them for every new patient so that he could establish a customized treatment plan. I did as they requested and two days later, I got a call. His receptionist told me that they were not going to schedule me an appointment, because the doctor said “There’s nothing else we can really do for you” and said to continue doing what I was already doing with my primary doctor.

In other words, I was doing it right.

This is the kind of regular obstactles that are set in the path of chronic pain patients who use these medications. And it seems like every time we turn around, there’s another restriction.

It is good that they are turning their attention to the dangers inherent in acetaminophen. But there are ways to address this without making life that much harder for another set of people. Am I going to have to take a higher dose of narcotics now because they want to “protect” me from the danger? I don’t particularly want to.

Hat tip to Annaham.

I will be stricter on this thread. No lecturing, no patronizing. Treat us with respect. If you think you can step in and drop names or pull rank to justify a condescending lecture to people with chronic pain conditions, to tell them how it “really” is, what their life is “really” like or how naive and stupid they are, I’m going to put my boot on your ass. Fair warning.

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 Three Rivers Fog)

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.

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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.)

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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.

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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.

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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 Three Rivers Fog)