For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

• Older women should not have children because their children are more likely to have a disability
• Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
• Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
• Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
• Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
• It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
• Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
• Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
• Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
• Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
• To violate those cultural ideas means that you are inherently flawed
• The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at FWD/Forward.)

Feministe. Feministing. Shakesville. Bitch. Kate Harding, Jezebel and Broadsheet.

Every big feminist-inclined blogger who has shown such urgency and import about Stupak and abortion-within-healthcare-reform. Every feminist blogger who has used their standing, their wide audience, to urge people to do something to change this bad thing that is going to happen to people like us.

You’ve been there for all the women with functional reproductive capacity.

Where have you been for all the women stuck in nursing homes and institutions and all the women who are managing to live independently who will have their services taken back from them and be forced to move into nursing homes and modern institutions?

Because this is just as urgent an issue. And just as timely: it is being considered in the current health-care reform package. This one. This same one with Stupak (or analog). This same one you are fighting to improve for the sake of women.

Where have you been for years on the Community Choice Act?

We are talking about policy that is cheaper than subsidizing the cost of placing someone in a modern institution (nursing home, “senior living,” “care home” and the like), that allows women to have independence, autonomy, and self-determination. We are talking about a policy that gives women control over their bodies and the direction of their lives.

Just like access to affordable abortion.

We are talking about policy that lets disabled and elderly people live out in their own communities, with home services that allow them to get by on their own.

We are talking about fighting modern institutionalization, which is alive and well and still just as horrific as the stories from those old abandoned state buildings you’ve all heard about.

We are talking about saving people from being corralled, shepherded, and treated like livestock. Saving people from abusive situations, from sexual assault, from neglect and starvation.

This affects women.

Why aren’t you there with them?

Why don’t I see this addressed with nearly the same frequency or urgency? Nearly the same sense of importance, immediacy?

Because it is quite immediate to quite a lot of people. People who do not have the power you hold in our political system. (Oh, you may hold less than your male-identified young, abled, financially-privileged counterparts. But you still hold a great amount of power compared to many who are not in such a position.) People who need allies to fight with them. Let me spell that for you: N-E-E-D. They cannot see progress for as long as their younger, more abled peers continue to ignore them.

This is your chance to do something that makes an enormous difference.

If you aren’t familiar with this issue, I suggest you make yourself familiar with it. Learn about ADAPT. Read about the CCA and the arguments for it. Look into your local Independent Living center and see about opportunities for volunteering. Whether it’s high-minded political activism or low-status work doing the caring and cleaning and cooking.

Read up about disability activism, and read up about today’s institutions. Force yourself to confront reality.

And, maybe, use that platform you’ve got to share your new knowledge with others.

We need you.

I’ve had a handful of names throughout my life.

I was born “The [Mom's Maiden Name] Girl.” My mother had not yet picked out a first name for me. She was living in a hole-in-the-wall shack in a poorer town in agricultural central California — it was where she ended up after my father kicked her out upon discovering her pregnancy. Get an abortion or hit the road, he said. I knew this as a child, but it wasn’t until I grew older that my mother also informed me that he was threatening to beat her, to punch and stomp on her stomach to forcibly terminate the pregnancy. He tried to send her out with no belongings in a scrap car — which was to get her from her then-home on the northern border of Oregon to her adult sons’ home in central California. That’s over 900 miles. She was 43 years old and not in the best of health. My oldest brother — something of a giant — had to gather some friends to physically threaten my father for him to make sure that she was able to make the trip safely.

I’ve never had a moment’s contact with him. My mother claims that when I was around six years old, he called her, having “dropped by” and wanted to take me out for some ice cream with his new girlfriend (with whom he had been involved during the short months my mother was married to him). Fearing for my safe return, she refused. And never heard from him again.

During my first months, my adult sister lived with us — she has told me stories of having to brush cockroaches off of me while I slept. And it wouldn’t be until I entered adolescence that my mother and I settled down in a permanent home: before that, there was not one residence I was able to stay for more than a single year’s time; we hopped around looking for the lowest rents, and spent time living in spare rooms in each of my adult brothers’ homes (three times with one, once with the other).

When I was five years old, my mother married a long-time family friend. When she did so, he legally adopted me, claiming to be my father and being added to my birth certificate as such — whether my mother just went along with this or actively sought it for reasons of future security, I don’t know. Regardless, my name at the time changed from [Mom's Maiden Name] to [This Man's Name].

A little less than a year later, after struggling with him over finances — he wanted her to continue working to support his retirement, with no support for either her nor I — she divorced him. And there, a problem cropped up: in order to get my name changed back to my birth name, she would have to go to court to prove that he was not, in fact, my biological father, and have him removed from my birth certificate. As a newly single mother, she did not have the resources to take on that task. So, even after the divorce was finalized, I remained [This Man's Name] — and she kept that name as well in the interests of having the same name as her daughter.

And that name remained mine for the rest of my childhood, adolescence and early adult life. I hated it. I hated the sound of it, I hated the man it came from, I hated the way he had treated her, I hated the way we were stuck carrying his family name despite having no ties to this family whatsoever.

Ever since I can remember, I have been very eager to get rid of that name.

And ever since I remember, I have been wholly uninterested in weddings and traditional family life. I had no interest in boys or girls as a teenager. I never dreamed about “my day,” about dresses and flowers and music, about honeymoons and housewifery.

Part of that, especially as I grew older, was that I had a distinct sense of my undesirability. I wasn’t interested in anyone else because I thought no one else would be interested in me. As I grew more aware of my health and struggled with my increasing limitations, I never even entertained the idea that anyone could ever be interested in me — not to kiss me, not to hold my hand while we walked through the mall, not to cuddle, not to call me “girlfriend” or “go steady,” not to live with me, not to propose to me and certainly not to legally commit to be stuck with me for the rest of their life. Who the hell would want that? I was a burden; my health was growing worse; they would have to help take care of me, and I wouldn’t be able to contribute to the household enough to count as an equal. So obviously, I wasn’t on the market. It never even got as far as whether or not I wanted to be: it was simply a matter-of-fact acknowledgement of a reality that would never change, and thus there was no point wasting energy trying to change it.

All this is to say that I wasn’t dreaming of changing my name as part and parcel of the supposedly-universal little girl’s dreams of wearing white and being pampered and fawned over and having pretty pictures taken in rolling green fields. I never had those dreams. I just really fucking hated that name.

So before changing my name as part of an adult relationship ever became a possibility, I had three names to contend with. My father’s name (which I’ve never officially carried), my mother’s maiden name, and that other man’s name.

And not a single one of them was a name I wanted any part of.

My father’s name? Sounded pretty cool phonetically, but it was the name of a man who threatened to beat my mother, cheated on her pretty openly during their short relationship, had some pretty serious class bigotry going on, and was by all accounts — including those of his other children, the half-siblings who wanted nothing to do with me — a complete asshole. Yes: there’s a name I want to adopt!

My siblings (on my mother’s side) actually shared a completely different name — they were from a different father — my mother’s severely abusive first husband who thankfully died in a motorcycle crash, and every single member of my family is convinced it was for the better.

And then there’s my mother’s maiden name. The name shared by my aunt and uncle and family up in Oregon, the name I was born with, the name I went by for my first five years of life.

It doesn’t matter. I don’t fucking want it.

I want nothing to do with any of those names. I grew up in a severely emotionally controlling and manipulative family and experienced abuse to the point that I am just being introduced to the idea that I may have PTSD by my counselor. (I protested, and she said “OK, well, we don’t have to put a name to it, but…”) I have pretty bad dissociative issues I am only just beginning to explore; I escaped with moderate to severe anxiety disorder and panic attacks that don’t qualify as panic disorder only because instead of being random, they are triggered by contact with my family. I fit every other qualification.

I was stuck at home with a mother who afforded me no space to develop an individual self, unable to make it on my own away from her because of my disability. I couldn’t work, couldn’t afford rent, couldn’t live independently. I pushed myself to return to college earlier than I should have — after I dropped out the first time and spent months housebound — cutting short my recovery time, just to get away from her. I lived for a year on Social Security disability (after I was approved), $7500 in needs-based college grants and several thousand more in student loans before everything started to run out — money, my ability to continue school and maintain grades high enough in a busy enough schedule to qualify for further student aid — and I couldn’t stay out on my own anymore.

And then I spent a very painful and traumatic six months stuck in close contact with an abusive mother who was keenly aware that she was losing her grip on me and escalated the abuse accordingly.

And then? I was able to move 2500 miles the hell away from all that shit to live with… a man. Whom I married. And whose name I took.

I was able to move to a place I wanted to move to, to live with this amazing person I wanted to live with, who loved me dearly, who was respectful and affectionate and treated me like a whole person, a person of my own whom he just so happened to be enamored with, whose family was warm and welcoming and accepting and easy to be around…

I was able to choose where I wanted to be, who I wanted to be there with, who I wanted to be, what sort of life I wanted to live…

I chose the family I wanted to be a part of. I built the life I wanted to live. It’s a life I just so happen to love deeply, a life that has given me so much more opportunity than I ever had on the other side of this country, thanks to the person I chose to build it with.

That person? Is a man.

I took his name.

I don’t think that’s a capitulation to patriarchy. I don’t think that’s a compromise of my feminism. I think that is a demonstration of my feminism.

I have a name now. It is mine.

I am going back to tag all my photos. I have wanted to get my collection organized for over a year now.

Of course, this means going back through all my photos before I moved out here, too. From March 2004 through December 2006. It felt much longer than it seems, typed out like that. Feeling trapped. Controlled. Cut in half, the only person who loved me 2500 miles away. My friends, so loving, but my social circle so wrapped up with my family that I have not been able to keep up those beautiful relationships since the move.

It hurts. The good things hurt. The bad things aren’t documented, with few exceptions (me staring glassy-eyed at the camera with a distressed smile, forced to pose with my family at the church event celebrating my class’ graduation, where my family threw a fit because I spent some of my time with my friends and their families, and they felt betrayed). But I remember them immediately when I see the smiles. Because the happiness was never unfettered. The happiness was desparate, tenuous, fragile, aware of its own brevity. There was no such thing as a moment of happiness that was free from all the pain. It was all baked together, inseparable, each a part of the other. I could never have happiness without knowing it would bring even worse pain as soon as it ended, and knowing how soon it was set to end…

And now here I am, cut off from the life I had, no contact with anyone except the occasional email to my mother (though she seeks me out daily, by email, calls to my husband’s phone, invitations to myspace and twitter and facebook, finding my accounts by association with my friends) living a totally different life, much calmer, freer, and finally now able to feel happiness… unguarded.

I had to have my shield, then, and it had to be strong, and always ready. My self, the person I truly was, was holed up in a fortress deep inside, very small, restricted, not allowed to explore, grow; too dangerous. I was saving it, unable to nurture it, but protecting it for the day when I might be free from the constant assault, safe.

Here I am. I don’t need a shield here. I have, in fact, grown accustomed to living  without the weight of the armor, always protecting. Grown accustomed to just living, just doing, just being what I am, and enjoying it.

But whenever I dip into my past, I find that I am vulnerable again. I have to fumble for that shield. Shit, I forgot it. Shit shit shit shit. Overwhelmed, crushed under the weight of everything rushing back.

I lose touch with the world I sit in, right now, in this chair with the windows open and streaming in light and noise from outside, the locusts foreign to me when I moved here, my cat sleeping comfortably on the floor, the kitchen in a mess as we reorganize where we keep the spices and the dishes. The kitchen where I can cook, now, without fear that I will be yelled at, guilt-tripped, physically pushed aside, my work taken over, can’t even put a pot of water on to boil without it being changed, always wrong, never able to do anything and have it just be mine.

This kitchen now, where I enter, I pour my tea from my refrigerator, I put my pot of water on to boil, I take my box of pasta down from the cabinet over the sink, I clear the dishes out of the drainer and put them away. And that’s that. No one behind me to move everything I set down, chastise me, ensure I am never allowed to do a single, small, petty little thing for myself.

I am caught up in the old kitchen. Where my hand is grabbed as I fry up the pork for tacos, held, and another hand does the same thing I was just doing, while telling me that I was doing it all wrong. Where I find my pot of water mysteriously moved, set on different heat, on a different burner, after having been yelled at from the living room about doing it wrong. The laundry in the back, where I am instructed on how to operate the washer as I try to set a load of clothes to wash, even though I have capably done my own laundry many times, I am assumed to never know, never understand, never be capable, never be self-reliant, always someone else’s burdensome extension.

Going through these pictures of the good moments, the fun, the smiles and sun streaming, this is where I am, caught up, again guarded.

And suddenly I start, and wake up. And realize that the person I am waiting for to come home is not my mother, but my husband. That it has been a year since I have seen my mother, and a year and a half before that. I have not set foot in California in two and a half years — now the same amount of time between when I finally got my first digital camera and when I packed all my belongings in flimsy cardboard with layers of packing tape and stepped on to my much-anticipated one way flight from LAX to PIT.

I am sitting here as the locusts make their locust-noises, I hear the rhythmic hum of the ceiling fan in the downstairs neighbors’ bedroom, I see my cat sleeping peacefully on the unvacuumed carpet and the bucket of cleaning supplies ahead of me. I realize that I have a bed not fifteen feet from where I sit, a nice queen size bed with a memory foam topper, in which I sleep every night, happy and secure, with my husband. Happy. And secure. Unguarded.

It’s a hard transition.

Written originally for my stint at Feministe at the beginning of July; been working on it bit by bit ever since, but suddenly it has become topical again.

Part I: The Personal

Note: I’m going somewhere with this. Please keep your mind open as you read, because I will be coming back in Part II with a concept that may seem to conflict with your initial reading of Part I. Thanks.

Understanding my background is essential to understanding my understanding of these things. And so we go.

My brothers and sister, between them, share two diagnoses of bipolar disorder, one of schizophrenia, two of those with psychosis, and all three have severe depression and/or generalized anxiety disorder. That is only what has been diagnosed by mental health professionals — D* was only diagnosed by way of being taken to prison and has not seen a doctor otherwise in decades.

My mother never saw a mental health professional and never will, but she shares most of the symptoms my siblings display, and my own mental health professionals have agreed with me that if there is a diagnosis to give her (with all requisite caveats), it would be borderline personality disorder.

1.

My brother D* had the worst situation of the family. He was the first to go to jail: when he was taken to court for some sort of licensing issue, he refused to give his name. Wouldn’t speak. And so they put him in jail. And he stayed there for eight months before relenting so that he could just go home.

How long would you stay in jail for a principle?