feminist blogs

Cross-posted: three rivers fog, FWD/Forward, Feministe.

Part 1 — Part 2 — Part 3

This is a series I always hoped would catch on. Because hey, I can write about stuff that helps me live my life, but that’s only one experience. I would love to see a community full of people writing resource posts for other folks who are living our different sorts of lives. I know we all negotiate shortcuts in the process of getting through our days. I know we all have well-trusted tips and tricks for dealing with society’s demands of us — fair or not. And I think we can all share them — writing about our own experience, and letting it apply where it might, and not where it doesn’t — and not creating expectations of individuals to respond to individually-shared recommendations, with all the problems that can cause.

Anyway, there is a great range of experience within the world of disability, much more than is let on by mainstream narratives, and another reason I appreciate the chance for us to talk about it is that it exposes the nondisabled world to all the things that go into living with a disability, the way that disability can make life very different, and appreciating that in a more-than-superficial way. While knowledge of certain experiences doesn’t eradicate prejudice against them, ignorance certainly makes it more likely, and is one of the easier issues to address — we talk about our experience (among ourselves and for all listeners); they catch parts of it and get curious and start listening.

No one is required to educate those who hold privilege over them, but most of us do practice the art of education every single day, as our lives play out in front of those around us. We are used to explaining things. It is tiring, and it is wrong when people demand or expect it of us. But when we give it freely — that can do a whole world of good. What makes it bad is not the act of an unprivileged person explaining pieces of their life to a privileged person — what makes it bad is the privileged party’s expectation that we will explain. That is what sours the entire experience.

But sharing what helps us with our lives — hopefully helping other people in similar positions who might be able to use the knowledge we gain from our day-to-day struggles — there is room for great good in that.

There is no shame in doing things differently. There is no shame in taking a different route to reach the same end point. There is no shame in reaching a different end point, even! If it works for you, if it makes your life easier, that is what matters. Not your conformity to expected methods of doing things, but the fact that it accomplishes your starting goal or gets you closer to accomplishing it.

And, hey, part of disability is to learn to compromise, and change goals altogether. To realize that all the milestones you are “supposed” to reach aren’t necessary to a successful, enjoyable life. You don’t have to have a career, or even a job; you don’t have to complete or even begin higher education; you don’t have to find a heteronormative partner, get married and have kids. You don’t have to fulfill all the responsibilities heaped on you by a society built around the particular qualities of nondisabled people. You don’t have to shower every day. You don’t have to appear “normal.” You don’t have to have a huge local social circle. What you have to do is whatever makes the struggles of your life easier on you. That is all.

There is no shame in that. There is no moral value attached to a method of doing something. It’s a method, that’s all. Just a method. One method. Not the only option.

In that spirit, I’m going to try to pick this series back up, and I’m hoping that maybe other folks will pick it up too. Because I really do believe it has great potential for the disabled community. We already come together and share resources; maybe we can do that while communicating our fundamental humanity to the outside world as well. And they need to listen.

They’ve gotta learn at some point – they never know when we’re going to spring a pop quiz!

So please, listen and read, and write or speak your own experience. Let me know if this is something you’d like to do, and if you end up writing anything! I don’t want this to be my series. I want it to be everyone’s.

Here’s what I’ve written on so far:

intro post / shower chair, shower chair redux / Tempurpedic Symphony pillow / cute pill case / TENS unit

Readers — what can you add to that?

Part 1 — Part 2 — Part 3

In the realm of disability, there is a lot of terminology like: assistive device, accommodation, care services, mobility aid, various sorts of therapy/treatment (physical/behavioral/occupational/speech/etc.); and so forth, about things/people/services which fill various common needs that people with disabilities share. The unfortunate thing about these terms is that they imply particularity to disability. But in truth, these things are not special to disabled people.

What are the needs being met? Things like: mobility and transportation, mental function, physical wellness, self-care. But we do not name the things abled people use to fill those needs as being special to abled people. This is because ability is an unmarked identity. That is, ability is seen as normal. The needs and behaviors surrounding ability fade into invisibility; they are not about ability, they just are. But disability is marked — it is special, notable. It can never just be; it is always about something, always representing and signifying something particular.

Along those lines, consider these examples:

• When an abled person wears shoes, they are not called “mobility aids.” Shoes are just things that normal people wear to do normal things. But canes, wheelchairs, and braces are special “mobility aids,” rather than just being things that normal people use to do normal things.
• When an abled person rides in a car, bicycle, or public transportation, they are not using “mobility aids.” They are just using transportation.
• When an abled person gets their hair cut, the stylist is not called their “personal care assistant.” Only disabled people need assistance with personal care tasks.
• When an abled person eats a meal cooked for them by someone else — a spouse or parent, a cafeteria or food court, a restaurant — the person preparing the food is not their “personal care assistant,” despite doing for the abled person the same thing PAs do for PWD every day.
• When an abled person uses a remote control on their television, this is not called an “assistive device.”
• When an abled person types out words on a plastic board with small key blocks indicating letters of the alphabet while staring at a screen, or speaks words into the bottom area of a plastic-and-metal hand-held electronic device while holding the top to their ear, this is not called “facilitated communication.”
• When an abled person is put through training at their place of work so that they can learn the tasks they will be performing for pay, this is not called “occupational therapy” or “vocational therapy.”
• When an abled person wears a bra, or a jock strap, or any clothing at all, this is not considered in the same category as slings or braces.
• When an abled person climbs the stairs, they are not considered to be a special device thought up just for abled mobility.
• When an abled person takes the escalator, they are not considered in the same category as the elevator or wheelchair ramp.

The trend evident here is that there are all sorts of things that help people live their lives. Having help to accomplish things — basic or beyond — is not special to disability. It is a fundamental part of humanity. Our society would not exist without all the little things we do, from products and tools to techniques and tricks to other people and relationships, to help us get through this world a little bit easier.

I want to emphasize this for a reason. A common trope in mainstream discussion on disability is that disabled people are helpless, and abled folk must take on the noble burden of keeping them alive, afloat. Disabled people need help with doing things, and it’s such a pitiable condition to be in, dependent on other people and things to get through life. Abled people pat each other on the back for the strength and courage and sacrifice they make in helping disabled people in their family or community. They often lament that would kill themselves before living as a person who needs help with things! And some of them take their considerable platforms to argue that because disabled people need help with doing things, their lives must not be good-enough-as-they-are, therefore their lives are not worth living at all, and we (the abled world) should withdraw all help and let them all die like they should have done as infants. (No, seriously, if your name is Peter Singer and/or you are the New York Times, this is what you say in all seriousness.)

In short, this idea of help-as-special-to-disability can be dangerous.

This is why I’ve come to like Things That Make My Life Easier: because that’s what they are. They aren’t super-special things that only people with disabilities can use. They aren’t super-special things that only people with disabilities need. They also aren’t things to be ashamed of. It shouldn’t be a hit to anybody’s pride to take shortcuts or to do things in an unconventional way. It shouldn’t be a possible insult to disabled people to associate themselves with icky, pitiable disability, and it also shouldn’t be a point of anxiety for disabled people who have concerns about admitting any sort of dependence or need for help. We can admit that we need things — or even just that those things are nice to have around — without it having to be a referendum on our identity, on our worth as a human being.

Or at least, I’d like it if we were able to!

So some of the things I post about are silly little things. Because they help me. Some of them are things that are particular to my disability — things that an abled person will likely not have to ever deal with, and may not be able to relate to — but that’s part of the human experience. I am a human being; there are other people like me who share these concerns, and they are human too. Part of the human experience is our experience. Because we are human. It shouldn’t have to be repeated like that, but it does. Disabled people have claim on the human experience. We can talk about our experience as disabled people, and it is not only about disability-in-particular, but about humanity itself. No matter how much it flames the insecurities of abled people, this is truth.

Next: An Invitation

Cross-posted: three rivers fog, FWD/Forward, Feministe.

The Post-Gazette has a story today detailing the costs of transit cuts in the city of Pittsburgh.

The city’s Port Authority needs $47 million to avoid cuts of 35 percent. According to the P-G, the Port Authority would have to reduce services hours by 35 percent, lay off 555 employees, and eliminate more than 40 routes, resulting in service ending entirely to over 50 communities. Pittsburgh public transit would lose 15 to 22 percent of its ridership under these cuts.

This could be devastating to many communities, and leave a lot of people stranded. Either you walk or you drive to wherever you have to go. Don’t have a car? Can’t walk that far? Sorry, you won’t be going to work today. Or bringing groceries home.

But people who ride public transportation are not the only people who would be affected by these cuts…

Chris Sandvig, project manager of the Pittsburgh Community Reinvestment Group’s GoBurgh Initiative, which has studied the benefits of transit in stimulating development, said Wednesday the actual costs would be far greater than those absorbed by displaced riders.

He estimated that $100 million to $200 million in infrastructure spending would be required to accommodate the additional traffic generated.

With Downtown parking already scarce and the city proposing to lease its parking garages to a private operator, increased demand could cause prices to skyrocket — an impact that would be felt by all commuters, not just former transit riders, he said.

“We really don’t have anywhere to put those cars,” Mr. Sandvig said.

Much of the additional money spent by former transit riders “doesn’t stay in southwestern Pennsylvania,” he added. “It leaves,” going to oil companies and automobile manufacturers.

Parking in the city of Pittsburgh is already a contentious affair. And driving? Do you really want to ask?

I grew up in California and I am used to navigating snarled, jammed, poorly-designed and/or simply overloaded roads and highways. It’s highly frustrating! But I know how to handle it. But I can tell you that driving in western Pennsylvania, especially the city proper, is nothing like I’ve ever experienced on the west coast. It’s not just that the roads are jammed; that’s true in any city. It’s the way Pennsylvania doesn’t know the value of a good sign — they’ll tell you when a lane is going to shift three feet, but they won’t tell you where the hell you are. That makes it rather difficult to figure out where you’re going, too.

Ahem. Anyway.

Imagine how bad it is trying to drive in a city already packed to the brim with wheeled vehicles (and the occasional duck boat) and occupied parking. Now imagine adding another 16,000 to 24,000 drivers.

Just because you don’t personally ride public transit doesn’t mean transit policy doesn’t affect you.

Cross-posted at three rivers fog.

A long time ago, I decided to start up a series. I lacked a catchy title, so I went with the mere truth: Things That Make My Life Easier.

What I meant by that is, of course, things that make my life with a disability easier.

Disability can introduce certain complications to a life — meaning that in reaching the same destination, a disabled person may have a bumpier, windier, more obstructed path than a nondisabled person. A disabled person may simply have more to deal with than hir nondisabled counterpart. And this is not inherent to hir condition: much of that difficulty, that obstruction, is constructed by a society that is built to suit a nondisabled person’s needs, concerns, and preferences. Some of it, to be sure, is difficulty that will never be eliminated, no matter the social context.

This means two things, things that are not at all contradictory but, in fact, must both be recognized for us to make any progress:

One, that disabled people face a great deal of difficulty that is ultimately the result of a society that cares more about the convenience of the comfortable than the comfort of the inconvenient;

And two, that disabled people may always face some amount more difficulty than their nondisabled peers due to the intrinsic nature of neurological and physiological variation.

Disability is an experience all its own. But at the same time, disability is not particularly [anything]. Disabled people are experiencing the same thing nondisabled people are, by the by: they are experiencing pleasure and experiencing pain; they are experiencing acceptance and experiencing rejection; they are experiencing stability and experiencing change. They are learning and expanding; they are teaching and demonstrating. They need food and drink, and the opportunity to get rid of bodily waste. They need shelter from the elements, a comfortable place to sit or lie. They need transport if they are mobile; they need a way to enter buildings; they need an effective method of communication with other people. They need social interaction; they need solitary time. They need intellectual stimulation; they need leisure and entertainment.

These are all things that nondisabled people need, too. They are not “special” needs. They are human needs. A core set of needs that we all share.

But these needs are not all met in the same ways.

This is the beauty of humanity, really: presented with a particular need, a set of people will take all manner of approaches, using all sorts of different resources available, finding all kinds of different ways to use them — different paths to the same end point. All paths take a toll on their travelers, while offering to those travelers certain advantages. It is up to the individual to weigh the costs and benefits of any specific way sie might take.

There is no moral weight to one path over another. That it harm none, do what you will. Whatever you are doing, so long as you harm no one else, it is good. Or, put another way: Whatever you are doing, however you are doing it, if it gets done, who the hell cares beyond that?

Next: A Reintroduction (Part 2 of 3)

Cross-posted: three rivers fog, FWD/Forward, Feministe.

You might’ve seen me around these parts before.

My name is amandaw and you can find my writing at FWD/Forward, my personal blog, and my Tumblr. That’s more-or-less in reverse order of posting frequency.

I am a cross-country transplant with several chronic pain conditions attempting to balance her life while working full-time. I have two cats, Mitsy and Buddy, still going strong after 4+ years. You can read their story here. I can’t wait for hockey season to start again (go Pens!). I love photography, but I never have time to do the post-processing.

I have one very long post ready for yinz, which I may break up into more digestible pieces. We’ll see if I have the energy for anything else along the way.

***

Comments will be fully moderated on all my posts. This means all comments must be approved before they will be seen.

This is largely because I don’t have a lot of time and energy to spend on conscious interaction online. I get home from work after 5pm and I am usually in bed by 8; part of the intervening time must be spent on more worldly endeavors such as eating and showering, and the remaining time isn’t necessarily spent cognizant.

I have seen how quickly things can get out of hand, sometimes with no predictable cue. I would rather spend this time reflecting, considering, and exploring than worrying, reading hurriedly, and trying to get messes under control.

I have spent a lot of time reflecting this year. I am trying to learn greater patience and flexibility. I plan to exercise it. I hope you will too.

Also, as a rule, I won’t be checking trackbacks, so if you write something expanding on what I’ve written, or want to express support, please feel free to contact me independently or leave a comment with a link to your post (I don’t mind!).

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)