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?

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.

***

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?

Note: Post was formerly split up into three parts, now combined.

july 31, 2010

engagement.

I’m having a really hard time with it lately.

I’ve been on a medication for months now that is causing mood swings, suicidality (more serious than has ever happened to me before, even through far, far more traumatic events) and significant dissociation. My doctor won’t give me a prescription for the old medication (which we know works, but hoped this one might work better) until I see him and he isn’t available until well into September. I call every day for cancellations. I have yet to catch one.

I can’t connect to my own experience. There are these huge changes in my life and I can feel a radical shift in my political consciousness but I cannot even figure out for myself what it is, much less articulate it for the people existing outside my shell of skin. Can’t even describe it to my husband or best friend, much less to strangers and minor acquaintances.

I want to be out there. I want to be doing this work. I want to be out there thinking, speaking, shouting. Pushing, pulling, exchanging. My heart is in this so deep.

It has been continual frustration over the past year, year and a half, as I’ve lost connection with myself, lost spoons, lost wherewithal, watched as so much has passed me by and all I can do is putter along the side of the highway, slow and careful baby steps beside large and powerful vehicles zooming by in a flash.

I can only do so much and unfortunately, what I want to do requires so much of me. It’s not as easy as “think smaller,” do little things, they still matter, etc. Because even the little things require a base investment that I am just not able to afford most days.

So I think to myself, hey I have time tomorrow, this weekend, next month. And by that time, my mind has lost connection with whatever it is I was wanting to do, read, think about, write about. And to be able to go back to it, I have to give that base investment again. Take myself away from whatever is going on that moment, and immerse myself in this point from my detached unaware fleeting past, and try to re-connect to whatever was going on in my head at that time.

Perhaps not surprisingly, this never really works.

So I flit about from day to day, trying to keep my brain awake, taking in information, revving and whirring and trying to do something with it — but I never quite move far enough up the levels to the ability to engage. To stop struggling to just exist, to start doing something other than just be.

And the day passes, and I haven’t done anything, and I go to bed and wake up the next morning to start from the bottom again.

***

i’m going to be doing this in small, incomplete doses. it will be disjointed, incoherent, and inconsistent. the parts may not seem to have connection to the whole, or may seem to repeat themselves. this is the only way I can do things, so bear with me.

***

I’ve been doing a lot of reflecting in recent months.

I honestly don’t know what to do with myself.

My ability to be meaningfully involved with the various communities in which I have found place has slipped away. The condition I find myself in now leaves me mourning the loss of my ability to consider, to plan, to change or to modify, the things that I do.

I can only do what is immediately available to me. If something is not immediately available, I am not going to be able to do it – at all.
If I am writing, I can either write the words that spill out of my brain or write nothing.
If I am reading, I can either read the words I can comprehend right this moment or read nothing.
In all that I do, I can either engage with what I am emotionally capable of engaging with or not engage at all.
No matter what, I can either do something right now or not do it at all.

The me that is available right this moment is the only me that you’ll ever get. If I can’t reach every part of me, then those parts of me aren’t going to be available. Only the parts that are here right now effectively exist for you.

***

august 1, 2010

I’ve noticed certain patterns in my social life. In the way I interact with other people. In the way I conduct myself as a member of the community. In the approach I take to working with others.

I am not liking some of what I see.

I’ve spent the last six months or so trying to dig deep, clawing down and down, trying to reach the depths of my soul, so  that I can see them. So that I can figure out why things have happened the way they have — but more than that — what is within my capacity to change that will allow me to become the person I want to be?

***

august 6, 2010

I don’t know whether this is a function of what was modeled to me as I grew up (my mother has borderline) — or something innate in me just starting to come out — or whether I’m misinterpreting it altogether.

I do know I’m ok with it. It’s not wrong. It’s just difficult to deal with internally.

I lay low at first. Then I feel out my place. Then I grow comfortable, and I assert ownership of my place. Then something happens, something huge or something tiny I don’t even commit to memory, just something, and I grow scared. I look inward. I want to change something. Not in the sense of “something needs to change” but in the sense that I have identified the specific thing and know what to do about it. And this is where things fall apart: I cannot change anything, large nor small. I can only throw out the whole of me and start over. All over.

I’ve done it a few times. And I’m tired. Just tired. That building process takes energy. Energy I just don’t have anymore.

And when I think about it, I like my place. I’ve set things up pretty nice. There are aspects of me I wouldn’t change for a minute. I’ve grown into something that I like, and appreciate, and value. Immensely.

And I’ve made connections. Come to know people. Come to have people know me…

but that’s what’s so scary.

Because I can’t change. Not consciously. Because people have one concept of me in their minds… I’m not me, I’m not mine. I could change me, this person right here, but the me that exists in all those other minds out there… I would have to change each one, individually, one by one, and some of them wouldn’t change, and some of them people would fight changing, and I would have to assert my change, my right to my change, and put forth the energy, energy, energy…

Because I’m not me. I’m not a person. I only exist insofar as other people have concept of me in their minds. I don’t exist in reality. I exist in other people’s minds.

If I need to change — and I don’t have the energy to go from person to person, changing their minds — then I have two options: remain the same…

… or leave it all behind, and start over.

but I can’t. I don’t want to. I don’t want to dammit I finally started building a real person and now I am losing it, losing that, connection slipped away. Here I am again, removed of reality, a personless entity. Confronted with something difficult, the tangible person might just slip away, and I am a ghost again…

***

that started out being about the way I handle relationships with other people… and ended up being about the way I handle being.

***

august 7, 2010

Today I am going to MedExpress because I broke down this morning and almost killed myself. My medication is part of it. But my situation can’t be removed from it either. I can take care of the medication part now. The other part takes a long time to process.

***

written privately:

I have been withdrawing further and further, from everything, and every single time I stick my neck out even an inch and try to say something I end up regretting it. regretting ever speaking a single public word. regretting being a real-life person that doesn’t close herself in one room for the rest of her life, only observing, never participating.

I’ve been regretting a lot of things I’ve said and done in the past.
regretting a lot of my patterns of behavior, a lot of my own tendencies.

trying to figure out WHAT is bothering me. WHAT is wrong.

doubting the “social justice” structure, doubting the Set Of Rules that are set in stone and the choreographed steps of the One Way To Do Things that one must follow at all times or else be consumed in abuse.
that includes “callouts” it includes gotchas it includes the focus on Bad Words over all other forms of oppression.
have ALWAYS hated the word “ally” and have come to hate the entire idea of binary identity, you are X or Y, and the Rules that must be followed to count as either/or. always hated the way it incentivizes people to get involved in matters of justice insomuch as it boosts their cred to other people. rather than to help a fellow living being.

I’ve been wondering, fuck, how are we raised as children that we are extremely fluent in Good and Bad Words, in tv shows and music, but as a community can’t meaningfully engage on all the thousands of little pieces of people’s real lived lives? the way we treat each other, the way certain types of people are left to starve or left in solitude or left to die because it’s not our responsibility to _____.

I hate these discussions. cant fucking stand them anymore. don’t know what to do with myself when I get home, because I can’t imagine being happy with myself ethically with being involved in anything. anything.

I can tell you that the more I look back on everything I have done, the more I hate myself. over the past three and some years.

there are a few things I am proud of. and will always be. but they can probably be counted on one hand, the things that I would not change. out of all the thousands of words I have spoken, or nto spoken, for those three years.

I’ve been working INTENSELY on processing this. figuring out WHAT is wrong and then figuring out how to apply that.
i spend every single day thinking through all of this.

[a particular incident] was radicalizing for me, and not in the way most people mean when they use that word.
i think it broke my spirit.

I am thinking more and more that I give up on having a conscious part in this, or any community focused on justice, because I feel like being known as A Person starts to poison my ability to act toward the actual betterment of hurting people. it poisons things from the start. I don’t know if I, just me amanda, am capable of handling a public presence at all without doing some really awful things.

I just don’t want to say I’M DONE GOODBYE to everything and then find a way to be a help. to be wholesome. and go back on my word.

I just want to poke along in quiet, just be an average nobody who isn’t trying to be known just wants to do things to herself and let people take from that what they want but not go and engage them when they do. I want to exist as just words. not a person.

The only reason I can’t quit, if I’m 100% honest, is because I can’t EXIST without having this community and this reading to feed my soul. If I give up my involvement, I basically give up on living, because I haven’t found anything that feeds me in that way other than this, and I won’t survive trying to walk that gap. If I quit, I will die.

I don’t know that there’s such a thing as organizing that doesn’t turn to shit.
I don’t know that humanity can return something worthy when we try to invest in it.

***

august 8, 2010

I don’t even know what I think. I spent  this weekend thinking about blowing everything up. This blog, my identity, my involvement in anything at all. Today, I feel ok with continuing as who I am. Knowing that I can change, and that’s a good thing. Standing by what I’ve said in the past, because it’s more honest than trying to erase what I’ve done. I’d rather be real but complicated than be a squeaky-clean, artificial symbol of perfection.

I thought back on the things I’ve written, and there are some things that I think are good. and successful. and important.
and I don’t want to blow those things up.

I have no idea how I’ll feel tomorrow.

***

I think that for the health of a community it is essential that a wide variety of approaches are supported, encouraged, nurtured, valued.

No community can thrive, and make progress, for so long as it limits the range of human reaction in its members.

This means that anger must be accepted. Embraced.

It means that being measured and reasonable must be allowed from those who feel able to be as much.

It means that being measured and reasonable must never be glorified or set up on a pedastal as the one true way.

When people declare that they cannot tolerate sarcasm – or hostility – or any other negative-realm reaction — they declare that they will not recognize those who feel or display these things as fully human.

It is fully possible to feel one way yourself — to tend toward certain patterns of behavior yourself — or even to look into the advantages and disadvantages inherent in various approaches to engagement. It is ok to recognize that anger can skew things certain undesirable ways.

But you must also realize that “reason” has disadvantages. “Logic” skews things certain ways. Being “even-handed” or “level-headed” or “fair” can cause harm on the margins as well.

And we all must recognize that anger is an integral part of healing. When a community, or an individual within it, faces trauma, survives abuse, endures violence and coercion — part of human reaction is anger, even hatred of the other party, or those who enable the abuse.

Some people never feel it. Sometimes, it’s merely one of many phases a person must go through to make right. And for others, it’s one facet of the prism through which they view their day-to-day life, in perpetuity.

And all of  that is ok. Because all of that is human.

It is dangerous to deny these things to people. It is harmful to stunt their growth, their recovery, their building, by only allowing, or only approving of, the pleasant and easy parts of them.

Perhaps you want no part in an activism that engages in snark. Or that doesn’t frame itself for the benefit of those outside the community.

I believe it is far healthier for the future of the community and the rest of  the world to meet people where they are, and work with them, than to wrinkle your nose at their messy reality and wash your hands of them.

***

All organizing is doomed to replicate the very structures it purports to destroy.

There is no such things as a human being free of influence. All human beings are shaped and moulded creatures, moving through their world differently than any other human being around them. All of the things that happen to us, all of the things that are impressed upon us, are irreversible. We can take those things and move in a somewhat different direction, but we can never be free of them altogether.

Given this, there is no possible way for an individual human being to create something that is not foundationally built upon the very things that person is trying to counter.

This is true in so many ways. For example,

By fighting gender oppression in the US, we are accepting as a basis the gender structure that the US maintains, and forming ourselves, our lives and our work around it.

By fighting gender oppression in the US, we are accepting as a basis the social structure that belongs to it, and imposing it on those who live outside of it, living entirely different types of lives under entirely different influences.

But even if we were to (claim that we) forsake that structure and instead build something entirely, completely new — we still begin that structure in the ways we have been taught to build. We still operate together in the ways that we have been taught to operate. We are still using the same language we began with, still interacting by the same patterns we began with.

There is no way to escape a system. Ever.

This means that movements are guaranteed to devolve in certain ways. Guaranteed to commit injustices against the people already beat-upon. Guaranteed to hurt each other, to experience divisions, as time wears on.

***

This does not mean that therefore, organizing is useless. That therefore, movements are worthless.

What it means is that we will perpetrate the worst of sins against our fellow human beings and we must accept that it will happen. We must let go of the idea that we can ever, ever, be free of the virus that infects us. The tighter we cling to it, the more the injustices spiral out of control.

***

I actually think that part of the beauty in life is found in the ways that we build imperfect things upon even more imperfect bases. The way we take things that have myriad problems, and push and shape and coax them into being something new, something entirely different, something existing on its own right — something still imperfect, but deep.

Deep.

Deep, containing multitudes, changed and changed and changing, storied and historied, inconveniences and complications…

We will never create something out of nothing. We will never begin a movement that is brand new, that is pure and free of mistakes at the start.

Perhaps we are better off for it.

***

can I have that kind of history? can I be that kind of complicated? and still be valuable?

***

august 9, 2010

I’ve found over the last few months, my own internal reaction to the same sorts of stimuli is broadly (but slowly) changing.

I’m finding myself more reflective. More peaceful. More generous in consideration.

I’m mulling over things and reaching different sorts of conclusions.

I like these things, because they are pleasant to experience.

But I refuse to think of them as being better. More moral. More right. I refuse to comply with anyone who would expect those things of me, or of anyone else. I refuse to have these things set as ideal, to create them as a standard.

Because this is just another route to edification. To building and sharing and bettering.

The different conclusions I reach mean that I get to internally enjoy a wider range of thought now — not that these conclusions supercede the older. Not that they are “right” and the older “wrong.”

The benefits that I give to others (of the doubt – of kinder, gentler interactions – etc.) are benefit that they do not deserve, and I am not obligated to give. They are benefits, not rights. They are not the right thing to do to one another. They can elicit certain desirable reactions in those others, such as being more likely to listen, more willing to consider my point of view. But I also know that human beings have a hard time changing until they get a spanking. That sometimes, it takes a rough fight for something to click — or for them to understand the importance and necessity of the concepts being communicated to them.

To really grasp the depth.

The right thing to do to another person is to engage with them without oppressing or abusing them.

That is a very wide set of boundaries to set, allowing for a very wide range of interactive approaches.

Including screaming “fuck you” at someone who has hurt you.

Even when they have no contextual understanding of why – or even that — you are hurt.

They don’t have a right to understanding. You have a right to be free from abuse and oppression.

Roughness, on the other hand, is a necessity.

A child might never understand why sie is supposed to avoid the stove if sie is never allowed to experience the pain of the burn.

A person might never understand what’s so bad about what they’re doing if they are never exposed to the pain that they wreak.

Pain is necessary to human experience. Pain is a signal that something is wrong.

***

I’ve made the mistake of trying to protect my husband from ever having to feel bad about anything he had done to hurt me.

I’ve made the mistake of trying to protect my husband from ever being exposed to the pain that I was experiencing.

Because…

Isn’t it just as bad –

Isn’t it equally wrong for me to make him feel pain?

Isn’t it equally bad for me to expose him to that pain?

If he knew that he did something wrong, why did I have to add, for him, guilt and regret on top of knowledge?

If I was hurting inside, then there was already enough pain for the two of us — there’s no need for me to add more pain — right?

Wouldn’t it be cruel of me to reduce my pain by asking him to feel some? Wouldn’t it be highly selfish?

Two wrongs don’t make a right — right?

I’ve made that mistake before. In the end, we almost lost our relationship, and both he and I endured personal (related but separate) traumas — because we were denying each other the privilege of sharing in one another’s burden. (You know, that whole thing monogamous relationships are supposed to be about.) We were trying to shoulder burdens individually, avoiding honest communication that would, yes, cause immediate-term pain, but which would be better for the health of our relationship in the short and long terms.

And I discovered something –

– sometimes, I have to let him feel that pain that exists because of his own actions. I have to let him feel the true weight of it. I have to let him experience the injury of it.

Because if he never feels that pain, he never makes that intuitive connection about why his actions were harmful.

He has to burn his hand to understand that the stove is dangerously hot. He has to feel the searing pain — and he has to work on healing his own wound.

I have to be there with him, through all of it. Be there to hold him up and help him process and recover.

If those things don’t happen — then he cannot be there with me through my troubles. For him to “be there with me,” I have to open up and let him go through the things that I need to “be there with him” for.

One cannot occur without the other.

If even just one of the two doors is closed, nothing can get through.

***

i realized smth abt myself

i shouldn’t let ppl “let me down” bc i shouldnt be expecting them to be perfect allies, a concept i hate applied to me, so why do i apply it to them

they are ppl they will make mistakes they can do hurtful things

but i shuoldnt turn it into a personal slight or a way theyve personally failed me

bc that makes it about a rel’ship btwn 2 ppl and not abt the structural issues and cultural attitudes that need addressed

those attitudes n those structures can be changed

we can work on that w them

not end that conv prematurely to focus on how they failed me…

***

august 11, 2010

I am too tired to write today.

I find myself wishing that I could just step into an alternate life space. Like stepping into clothing. But I would step into being me – the me I want to be. Already have the history, the approach nailed, the habits set, the emotional and communicative vocabulary mastered. Just step into the outfit, zip up the side, and be there.

I can imagine a me who is comfortable, happy, and at peace. Who has interactions she is proud of her behavior in.

It doesn’t mean she’s necessarily going to be the popular kid at school, that everybody is necessarily going to like her. Or that she’ll never have conflict, never be at odds with someone, never have a frustrating exchange that goes nowhere and wears her down.

It just means that she will be calmer. And gravitate toward different modes of conversation. And maintain a different focus.

Then again… can the first ever be true, when the second is allowed for? If people don’t like me, if I have conflicts, if I make mistakes, will I still be happy with myself, and at peace? Will I still stand by my own actions?

***

I realized something else today.

So much of what goes wrong in many of these conversations happens because of inelegant phrasing, misunderstood points, poorly-connected concepts, poorly disclaimed assertions.

So much of what I kick myself over, I do because of these things.

But, I think: I just have a physical disability that sometimes has cognitive symptoms. Sometimes my wording is clunky and I have trouble really communicating my point; I have to beat around the bush and hope that people will look toward the center of my circular path to try to deduce what I am actually trying to say.

I fault myself for those things.

But fuck. Why? Why do I fault myself for that? Why do I accept the standards practiced by wider society, wherein speech must be precise, artfully navigating complicated subjects, or else the speaker cannot be taken seriously and any misunderstandings are hir own fault? Those standards serve to effectively shut out certain people from public conversation. People who lack access to high-quality, long-term education. People who live with learning disabilities or cognitive disorders. People who learned English as a second language. People who speak nondominant dialects of English.

These people will suffer a greater burden under that sort of standard, fighting against constant resistance, dealing with far more misunderstandings and having their arguments endlessly derailed.

All because of an insistence on maintaining this standard built on expectations of a certain ability, a certain background, a certain experience.

and no, I will not apologize for  thinking that is fucked up.

what I will do? is try to put into practice a flexibility, and budget a little more energy toward, as a standard, making sure I am understanding what a person is trying to get across, and allowing room in any response for my reaction to take different direction as my understanding of the conversation adjusts to the person’s expressed meaning.

That does not mean that people can rationalize their way out of saying offensive things.

but… maybe it means I will let go of coming down hard on them, especially from the start. let go of the need to make a Big Deal out of what they just did wrong.

because maybe, I’m not even understanding what they did.

this is something I *hoped* others would apply to me, all along, with my difficulties with spoken/written communication. a benefit I hoped some would offer me.

I don’t think I’ve ever really connected, on that deep-down level, on why, and how, to offer it to others.

and I really need to do that.

I really hope I can do that.

***

I can offer you explanations why I have done certain things.

Why I have rushed to judge people.

Why I have judged people. at all.

Why I have — while knowing I hated the very idea — given in to labeling certain people or groups as Bad People because of certain things they had done wrong.

and discounting everything they say or do from there on out, because of those wrongdoings.

(i will not take argument about the fact that they were, in fact, wrongdoings.)

Why I have invested in “call-out” culture.

Why I have practiced — and propogated — The Rules(TM). the set of laws governing the precise process a person must follow in a given situation. the precise steps they must take. the precise words they must say. the precise reactions they must offer. [sometimes, The Rules(TM) call for a person to offer the "wrong" reaction, instead of the "right" one, so that The People may have a target for blame, feigned righteousness, and ridicule. if the "wrong" reaction is not offered, The People have the right, under The Rules(TM), to make one up wholesale.]

(by the way, what is the definition of “objectification” again? making a living, breathing person into a vessel for someone else’s purposes? … hm.)

gdamn, I am horrified at how I have participated in that culture. and how I have participated in forcing it on others — in completely overtaking a conversation about a concept — sometimes about people’s lives — and turning it into a conversation about how The Rules(TM) have been followed and how they have now.

that shit is poison.

***

I want to believe in redemption. I want to believe in power. the power to improve. the power to stretch, to learn, to grow.

I want to believe in capacity. I want to believe in potential.

I want to be there alongside someone who is pushing and pulling, struggling with new knowledge that they may not have even accepted yet — but often they do accept it, and process and digest it, and over time incorporate it into their daily life…

I hate the way I’ve discounted the very possibility of any of that, sometimes.

I hate the fact that I know I’ve made people feel that way — that their potential is being discounted, that having done one thing wrong means being written off the rolls of the good for eternity.

***

august 12, 2010

written in early june, unfinished (i say that like there’s any other status for anything i write):

Maybe I’m not supposed to say it, but I’ll say it: I regret pretty much everything about my involvement in that Feministing boycott.

Look, it was bullshit. Bullshit what they did, including dropping the “tone” argument (in those words) on me for being mildly assertive. Bullshit that they think a history of five posts that almost all played into exactly the disability tropes we want to deconstruct constitute a history of meaningful engagement with disability. Bullshit that they are OK with having a comment space they don’t want to put the effort into maintaining — leaving it to the wolves.

But here’s what I regret, truly, deeply, to the bottom of my soul:

Getting into the blame-the-individual game.

It honestly eats at me. I hate it. I just hate that I went there. I hate that I did that. I hate it for a variety of reasons.

It sets me, or the criticizer, up as somehow more righteous than they, the people/group being critiqued.

That sets me, the criticizer, up for failure when it is revealed that I am no perfect child myself, and have my own issues and have made my own shitty mistakes.

It makes it difficult to engage with them, the criticized, if they do make a genuine effort at improving, even if they stumble as they navigate new territory (even if it’s territory that shouldn’t be new).

It divides the audience, you, into camps. People on Side A and Side B and over there, people who don’t give a shit about this drama and just wish we’d all shut the fuck up already. (Those people don’t matter.)

It makes the whole conflict into a controversy to be consumed.

And that’s the issue here. That’s what I’ve learned in the intervening time. Either it’s a controversy that can be parsed for the consumption of the hungry masses, those eager to find a way to make a name for themselves — by playing the reasonable one, or by staking out a righteous position — and those who are just using your issue to settle old grudges … or it’s nothing.

Either it can be consumed as a product, a way to prove something about yourself, the bystander, the individual — or it’s not worth any attention at all.

Pay no mind that the struggles of marginalized people every day go on in ways that are not easy to gin up into “controversy” — ways that are messy, difficult, not easy to navigate — but because they are not of use to the observing masses, for the personal betterment of the people unaffected, they aren’t even worth more than glancing observance. Onto the next Gawker slideshow.

***

I think part of the reason I tended so much toward a flip of a finger and a “fuck you” was because I didn’t know how to assert my own boundaries.

I didn’t know how to say “This is more than I can handle,” or “You have crossed a line,” and add, “but I cannot articulate what or why right now, and I should not have to” … while still being ok with what parts of the conversation were OK, and perhaps (but not required to be) OK with addressing those without addressing the bad parts.

Part of why I would start flipping out and go into pile-on mode is because someone crossed a line, and I had these intense feelings of violation inside me, but to acknowledge all the other parts of the conversation that didn’t cross a line felt like it would be denying, to myself, the feelings that I had. That were very real.

And what I have desperately needed, all my life, is realness.

To deny those feelings would be to deny my very self, my very being, my very existence in reality (as opposed to dissociated ether).

It would be a violent act against my own body, and I could not do it.

But I couldn’t identify that boundary. I just… knew it was there, and had this hot, intense, wordless instinct/impulse/inner knowledge that I could not violate it, that to violate it would be as to death. Just that incredible, deep, burning feeling of being trapped, knowing something is threatening your life. What do you do to that? Except lash out, beat out, violently thrash about in a thoughtless attempt to survive, without even having the time to know what it is that is threatening you?

I feel now, like… I see something that crosses one of those lines, and my heart wells up in my throat and I feel the burning behind my eyes, but my self-awareness is on, and I can stop to consider what it is that is bothering me, and what it is that seems wrong, and evaluate the idea and its validity, and possibly engage it on non-flipping-out terms.

I’ve also started asserting, to myself more than anyone?, my right to not engage on things that I know threaten my being that way.

Like when I’m this close to committing suicide, I had offered thoughts on a touchy subject, and someone responds to it in a way I can already tell is not going to be pleasant for me.

I can respect that person, and know that she was probably, actually, making some good points (while I might have disagreed with her on a fundamental basis, or had a different perspective) and important pushback. But still acknowledge that this discussion threatens my being and just stay away. Click away or scroll away from any mention of it, stick with things I know I can handle.

I never used to be able to do  that. To stop. And assert that boundary.

If I felt connected to something — a person was saying something directly to me, or it was something relating to me the person, or something which is of deep and far-reaching importance to me — I felt… not obligated… but drawn, strongly to engage with it. Even if it was something that was going to upset me during a dangerous time. Even if it was something that had a good possibility of crossing certain lines. Even if it was a person I knew was acting in bad faith, or just plain known for being intentionally difficult and cruel. My attention was just… a given, something that wasn’t even under consideration, of course I had to pay fucking attention, and possibly put in my two cents. Usually in one of those nefarious tones.

I could not look away. Boundaries were extremely difficult for me to manage. Extremely difficult to make myself create them, and maintain them. Tending to them, caring for them — out of the question, because I was terrified of them.

I’m learning, slowly.

And I think it will be better for me, in managing my relationship with my peers and community members.

***

august 13, 2010

focus on language can be a learning phase for ppl new to the movement/concept of disability rights

we shouldn’t focus on it to the exclusion of all else, but it is a subject that newly-political folk can cut their teeth on, a way for them to get used to disability centered analysis, and talk of it should not be suppressed

tabs otoh need to leave language alone, because no matter what when they speak up to enforce good words/bad words, they are participating in a diluted/lite version of dis. activism that refuses to go any further than the safe and easy parts for them to modify, in a way that helps them make a name for themselves as “true allies”, again taking the entire focus off the conversation about any number of things affecting disabled ppl, and again making tabs dominate conv. (now instead of being about whatever topic, including disabled ppl talking abt their lives, it’s a tab person talking over everyone about whether or not some person said a bad word)

language is important, but language should not supercede all other concerns.

tabs need to let the disabled ppl talk about language, let them be the ones to decide when a word or phrase is harmful, let them be the ones to point it out in the situations they decide are appropriate. if they want to support pwd in this matter, they should not talk about it themselves, but should lift up and promote the works of pwd who talk about it. rather than talking themselves, they should reference and direct other people to the works of pwd.

***

I’ve been struggling to make sense of everything that is going on in my head, that has been going on for months.

There are so many changes I want to make. Part of why I try not to run around declaring my intent to make them is because I have to identify them first; I have to figure out what’s wrong before I can figure out how to make it right. Sometimes it takes me months of shaking things around inside my head to get some of those ideas to fall out my mouth in words rather than lurching gibberish.

But part of it is, as I wrote a little while ago:

Right now I am trying to refocus. To take a look over my activism and engagement. And seeing shit I’m embarrassed about. And hate myself for. And want to change.

But as my husband and I have done in the past: don’t make promises that you will change. Because what matters is that you do. And you can’t guarantee that you will. So I would rather you just hold your arm around me and stumble forward with me. And work on your shit. We will only ever know if the other is going to change once that change is put into effect. That takes years. Years.

Years.

***

I wonder sometimes whether we do injustice to the whole picture of people’s lives by trying to make judgments narrow slivers of their experience.

It manifests itself in the way we try to slice out human experience like we do sections of beef. The way people are easily __categorized__ into binary states of being, into neatly-delineated pre-set __identities__, the way those identities can never combine into something different than the simple sum of their parts, but must be as easy to understand as the addition of single-digit whole numerals.

But another way it manifests is in the way that we judge people’s actions.

The way it’s “just as bad” when the woman beats back on the man. (to the point that hetero women often get arrested for DV because their abuser knows its another avenue to abuse them. case in point, my sister with her ex-marine husband with a buddy in the system.)

because when you look at one narrow slice of that person’s life: yeah, the pure act is “just as bad” no matter who does it.

The way DV victims will often not let on that they are being abused to the people around them — family, friends, teachers, coworkers — because they know of the swift and unequivocal condemnations of the insidious beast that is that person’s partner.

because in a situation of your hypothetical het man and your hypothetical het woman, in your stereotypical het relationship, it is understood that abuse happens because a person is evil and malevolent and mean and there can be no room for any other facts.

but what happens when you step back? and look at the whole?

that woman is looking, not at a narrow slice of a hypothetical situation with imaginary people. she is looking at her life, her real life, in all its complexities. she’s looking at the things that her partner does that endears him to her, or the history they have together, or the fact that he is working his ass off to keep her and the family fed, or the way he stays at a job that is killing him because they need the health insurance it offers, or the sweet things he does for the kids.

Or maybe none of that is true, maybe there really isn’t much positive in the relationship, but it’s fucking HERS.

And to have someone loudly, unhesitantly condemn that? and if she squeaks a single word in protest of that condemnation — or simply lets on to the complexity of the situation as a whole, the conflicted feelings she has about it? what do people do?

they call her brainwashed, battered wife syndrome, inexplicable. No one would have “abuse” happen and rationally choose to stay.

and maybe all this does is just solidify her devotion to him. or to silence. because it’s just been demonstrated to her, that no one else is on her side, either.

just the side of that imaginary hypothetical stereotypical person.

no place is really safe for her. the real, true being, her. everything encompassing all that she is, and does, and feels, and lives. no one accepts that. only the pieces of her that they like, that are convenient to them — that they can use for their purposes (proving to themselves a point about their own lives, or a stereotype about abuse victims as a group).

She is a slice of a person, a sliver of an experience that we the community can extract from her, to inspect and analyze, to hold up to make a point off of. She is just a piece, a section, a portion. Not a life, a living being, a breathing throbbing soul, a person with her own experience that is made of her own history and her own personality, that is completely and totally different from anyone elses.

But we have grown comfortable with this practice, taking that huge and complicated beautiful mess of a life and narrowing our focus in to one tiny spot in its landscape, and have entire conversations about this one little tree without ever one acknowledging the huge and intricate ecosystem in which and on which it survives. Whether that system is thriving or deprived and dying makes a big difference in what conclusions to draw about that tree, but we never want to acknowledge the rest of the expanses of that whole landscape, that whole picture, that whole being. That would complicate things.

To an extent, simplification is a tool that can be put to useful ends, but it is one of many, many tools in the chest, and we should caution ourselves about its drawbacks, about the costs that come with using it. Right now, we seem to be using it while pretending that there are no costs. And vast swathes of living breathing landscapes are scrubbed out of existence and we wonder why the tree starts dying.

***

There’s something else that I think is highly important to any healthy community, or movement, that slips through the cracks when we engage in this narrowing of focus, this eliding of — not just context, that’s not really the concept I’m going for here — but wholeness…

That is, in any conversation on any issue there is going to be a lot of pushing, and pulling, and tension, and conflict, and difficulty. It is going to result in strained patience, hot faces, teary eyes, and sore feelings. And these things need not always be. There is no reason to create them where they would not otherwise occur. The things, themselves, are not necessarily valuable in and of themselves. But they can be symptoms of healthy change.

What we need when we talk about issues affecting real lives is for the conversation to be bursting with a wealth of different focuses, different approaches, different goals, different methods.

We need people to be “reasonable” and to try to reconcile our ideals with the reality of the world. We need people to figure out how to implement these ideas we have, and how things might go wrong in doing so, and what issues might come up in doing so, and how we might address those things if they do.

We need people pushing back strongly against those who would strike out middle ground and forge compromise, reminding them of what they might forget in their focus on the achieving the possible. We need people who will cry out against injustices, no matter how it might offend those outside, and people who will take middle-grounders to task for the things their movement-programs fail to address.

We need people who will do diplomacy to people outside, who will try to introduce them to easy topics, try to wean them onto a diet of political awareness, try to frame things in a way that they will understand, try to find ways to convince them how this issue is relevant to them. We need people who will be kind and gentle, who are there with reassuring words to fall back on when they make a mistake, and positive reinforcement when they do something right.

We need people who are harsh and grounded and ready to make clear those same outsiders exactly the greusome realities they have a role in creating. We need people who are hardened and unsympathetic, who are credibly able to make an uncooperative outsider’s day quite unpleasant if they choose to engage in bigotries.

We need people who will explore the boundaries of the conversation, searching for new frontiers, pushing into places that are uncomfortable, unsettling.

We need people who know how to get shit done to keep everyone fed and clothed and sheltered and stimulated. We need people who know how to work the system, and we need people who know how to work around the system.

All of these things get lost when the conversation, instead, becomes focus on one tool in our toolbox. One very narrow method or process, one particular style or approach, one device, one instrument, one tool in the enormous toolchest of relationships or organizing or community building. When one style of speech is condemned, or one point of view is diminished, or one way of accomplishing something is held up as exemplary.

Because when you are looking at a cropped picture of something, it might look bad. It might look insufficient to reach its stated end goal, or it might look unpleasant in the absence of context.

But when you widen your view to include the entire scene, that act might change in connotation. It might not be perfect, and might not accomplish everything. But it serves a purpose that perhaps wasn’t being addressed. It fills a need that might have gone unfilled. It shapes a space in a slightly different way. And perhaps we couldn’t move forward, in the original space. Perhaps we were smacking up against the boundaries we had created before, and finding our needs growing all the while.

Maybe it takes a lot of different approaches to help shape our space the way it needs to be.

Maybe we never fully understand what we need, and constantly have to make adjustments, and find ways to accomplish a reshaping, to account for newly gained knowledge.

maybe we all serve different roles. and maybe we all need to realize that the role we fill cannot fill the needs of our entire community. that our role is very important, but at the same time, so are the other sorts of roles people fill that are different than ours. and that personally, we might not fully understand where they are coming from or how they go about things, but we must realize the unfortunate limits of our own individual imaginations and allow for the possibilities of the collective imagination.

of course, what we collectively imagine is subject to a lot of push and pull, teem and throb…

***

we need people who can write reasoned, objective analysis.

we need people who can write impassioned pleas, and compelling attempts to persuade.

we need people who can bring deeply-felt emotion, who can get across the importance of a situation, or the true effects something has on a living breathing life.

and we need people who can write from experience, who can tell personal stories, who can convey humanity.

***

august 15, 2010

scribbled on a notepad on my bedside table, in the dark

putting

things in stark terms

overusing as a device

people get distracted

i can be more

– generous? –

neutral in

explanation

to give greater number of people access to my analysis

then again, over-

reliance on “reason”

logic neutral objective etc.

shuts out many

marginalized people too

discussion approach

centering around preferences of dominant group not

needs of marginalized group

speaks to necessity of

many approaches

& space for multiple

& variant conversations

not all needs can

be served with one

approach

choosing just one

as the only “good” or

allowable approach

means explicitly

rejecting certain

people’s place in

any conversation.

***

I do feel highly uncomfortable with my own overreliance on stark, unforgiving terms.

I want people to give me room to breathe, room to work, in any interaction. Because I want to be able to learn something from it. That doesn’t mean that any wrongs are ignored, or immediately forgiven. It means that sometimes, the shape of the conversation changes, when the focus narrows on a specific part of  the interaction, when there is a whole wealth of material and opportunity to explore in the greater conversation.

I want to explore. I want to discover. I want to pursue a politics rooted in wholeness.

***

I want to be someone who recognizes and acknowledges the whole of a person.

We cannot live for so long as we are chopped up into conveniently-sized portions for the consumption of others.

***

I’m wondering about the way I interact withmy communities.

I’m thinking about the structure of internet activism and the incentives it creates for bad behavior, abuse, manipulation.

I’m thinking about the way that every group is, in some way, an enormous failure. The way disability organizing is overwhelmingly white, for instance.

No matter how radical any group is, they are limited. Humanity is limited. It can only understand things through lenses, and no lens can take in the whole of a scene at one time.

We are all limited by the lenses we use.

If we are looking through an anti-racist lens in the US (and I mainly mean the lens that white folk use),

we are probably eliding the structure of racial inequities in the world as a whole. We are applying the structure of the US racial system to our thoughts and actions elsewhere in the world — even when we are trying our hardest not to.

If we are looking through a disability-positive lens,

we are probably assuming certain things about society where we live that may not be true in societies across the world. How would disability activism change in an area where there are no modern streets to worry about curb cuts? How would we re-focus and  re-center the people affected? Would we be able to?

Every lens skews the view of the person looking through it. And we cannot see without those lenses.

I’m thinking about how even some of our most venerated leaders held considerable prejudice, and advocated for the “wrong” side of certain issues.

About how Obama seems to be personally uncomfortable with queerness, and is deporting great masses more people under his administration than

About how Gandhi wrote against dark-skinned people in South Africa in his early years there.

About how important it becomes to us to deny that there is any possibility Martin Luther King, Jr. might have personally disapproved of gay marriage, regardless of what he may have thought himself (point being, if he were shown to inarguably believe in the rights of gay folk too, we would clutch tightly to that — and that is indicative of something).

About how we fashion our leaders into idols. About how we strip them of their humanity, scrub them clean of any blemishes, cover them in white virgin cloth, and freeze them in stone, so that we can display them to the public as a point of righteous pride.

I am also thinking about the way these shining idols shape the way we view each other.

I’m thinking about how I would see a person, and expect them to be close to perfect. And when they failed on one thing, grow immensely disappointed with them and feel as if I have been betrayed. As if they were lying to me about their perfection. That they probably never claimed, but that I wrote in for them.

What good does this do me? To expect nothing but the best, find out that these human beings are human, and feel that I must disassociate myself with them to protect my own image (of myself)?

It doesn’t leave me with a lot of people to associate with, I’ll tell you.

***

Does it count as depression when you know you’re too emotionally tired to go any further, and you just want to go to bed now to avoid the mood down-swing you can feel coming, but when you look at the clock it’s only 4pm?

***

for a long time, I have been creeped out by a certain type of person in the blogosphere.

for a while now, I’ve been hating and fearing the times I know I’ve played that type.

it’s the person who is there for every fight. there for every drama.

the person who’s got the gossip on all the parties and can report on the game.

the person who has to take every drama and analyze it to death. has to give the play-by-play and offer commentary on every little move. where so-and-so went wrong here, said a Bad Word there, broke The Rules(TM) over there. where so-and-so followed The Rules(TM) well here and you all should observe so-and-so’s example.

the person who can always fit an incident into a convenient narrative mold, shove it in as tight as you can and pop! out comes the pre-shaped narrative. the person who can always find a way to create two clearly defined and opposite sides, and set up the argument in such a way that the Right Side and the Wrong Side are easy to deduce if you know The Rules(TM).

the person who hangs around like a vulture, waiting for someone to slip up, trip up, fuck up — so they can pounce, and pop them in the mold, and serve up the resulting conveniently-shaped thing for the public to devour.

consume.

the person who knows the right words to repeat, and the right people to suck up to.

the person who knows how to network. how to build a following.

the person whose interactions in the community always seem to come down to winning. being the best activist. the most perfectest. the best “ally.”

and it just feels weird because they sau all the right words along the way, but ultimately it feels like … they aren’t in it because they care about the issues they’re talking about. they’re talking about those issues so that they can be in it.

and seem to get so excited when something new erupts. because it’s not a clear sign that there is some pretty tough pain going on. it’s a clear sign that there’s a new drama to reputationally profit off of.

***

you know when this finally came to head for me?

that big fucking feministing blow-up. (which one, you ask, and i say exactly)

i regret ever getting involved.

i regret it deep down to my bones.

ever since it happened i’ve been withdrawing further and further, because i saw some ugly shit in that, and what did it result in? what good became of it?

i came to distrust a lot of people after that because they kind of… disappeared… after the drama was gone.

there were people who were glad to talk the drama, but weren’t there for the quiet moments when we were talking about something that couldn’t be played against someone else…

that was unsettling.

and i started examining exactly what was unsettling me

and over time i’ve come to realize – it’s my involvement in the first place.

the fact that i stood up and “called out” someone

the fact that i got into the realm of blaming individuals, shaming individuals for being *ist, and therefore Bad People who shouldn’t be listened to by the wider community because their reputation was tainted

that game is poison.

“calling out” and categorizing people by their perfection-in-my-area quotient and demanding that they repeat after me the Right Words they were supposed to say, that they follow The Rules(TM) to the letter or have their misstep (or conscious refusal to play the game) used against them, used as examples of their bad faith.

it’s poison.

it kills communities.

it eats them from the inside out.

***

august 16, 2010

I don’t know if this place has anything for me anymore.

If I have anything for it.

I don’t know if I have anything left to say.

and I’m tired of fighting.

and I think I need to just let go.

let go of my idea of community, of relationships.

just stand on my box on the street corner, and speak.

and once the words have left my mouth, let them go.

let the world do with them what they want.

I opened this window several hours ago in hopes of reflecting on the closing year. The best year of my life, the first year I’ve ever felt like it was my life — immediately following the year my life seemed to fall away from me.

I have not been able to form words, even to myself. I can feel the presence of something inside me, feel the need to pour out in words, feel the emotional composition of the space — but when I reach, I find nothing.

I wanted to explore contentment. I wanted to reflect on security, on legitimacy, on ownership. I wanted to look at what I’ve gained — what I’ve established.

But when I reach, I find nothing.

I can see the form of the space emerge. But I cannot access the contents.

I need to be in there, digging, shaping, sorting, building, smoothing. Processing.

But all I can do is know that space is there, and that I cannot be in it.

My own thoughts, emotions, and memories are hidden from me. Buried away. For my protection.

One day, some time ago, I needed that. I needed to be able to bury the raw sensation of being. Bury it deep, undetectable. To keep it from being infringed.

But now that I am safe from what threatened me — now that I have cleared some space — now that I want to use what I’d saved –

I find nothing.

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.

Of obvious interest to readers of this blog. Check it out, forward it around. It’s only ten total questions, along with the usual demographics (age/sex/race/marital status).

It’s important to get perspectives from people who aren’t necessarily connected (having it themselves, or having a close friend/family member with it) so don’t feel like it’s irrelevant if the people you know don’t know a whole lot about it. That’s the point!

WASHINGTON, Aug. 18 /PRNewswire-USNewswire/ — Men’s Health Network (MHN) has launched an online survey to gauge awareness, knowledge, and willingness of men to take action when faced with the signs and symptoms of fibromyalgia. MHN is collaborating with the American Pain Foundation and National Fibromyalgia Association to encourage men, women and families nationwide to participate in the survey effort.

An estimated 10 million Americans suffer from this debilitating chronic pain syndrome, which impacts women and men physically, mentally and socially. The condition primarily affects women and has long been labeled a “woman’s disease.” However, men suffer from the condition as both patients and as caregivers for the women and loved ones in their lives.

“This survey will help us understand what men know, or more importantly don’t know, about fibromyalgia, its symptoms, and a man’s willingness to discuss any pain, discomfort, fatigue and other signs of the condition with his physician. Men are raised to believe that big boys don’t cry. They are told to ’shake it off’ and to ‘take it like a man.’ Showing pain is showing weakness for many men,” says Scott Williams, Vice President, Men’s Health Network.

Male sufferers are often reluctant to admit experiencing severe pain or discomfort, and as a result, may report milder symptoms then they actually have, making it difficult for healthcare providers to accurately diagnose fibromyalgia.

“Fibromyalgia, though very common, is a misunderstood and very under-diagnosed disease. It has a reputation of affecting more women than men, but I am certain that the disease is far more prevalent in men than is reported in the data. It’s a perfect disease to stay under the radar for men since men are saddled with the harmful belief that pain is something to endure and not report,” said Will Rowe, Chief Executive Officer, American Pain Foundation.

Fibromyalgia can cause absenteeism and presenteeism issues in the workplace, relationship/family troubles at home, and struggles with pain, fatigue, GI disorders, and headaches, etc.

“The National Fibromyalgia Association welcomes this opportunity to collaborate with Men’s Health Network on the survey effort. Although 10 to 20 percent of fibromyalgia patients are males, few scientific studies have been done in this population,” said Lynne Matallana, President and Founder, National Fibromyalgia Association.

To learn more and to participate in the online survey please visit: www.menshealthnetwork.org/fmsurvey.php.

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?

Apologies for RSS readers; I forgot to cross-post this when posted at Feministe! Getting it posted so I can move on to new posts.

***

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.”

[I am having with the WordPress backend and cannot paste the full post here. Once I get WP upgraded I'll put the post here as well. Visit Feministe to see the post for now.]

This is a post about a bit of a blow-up during my guest posting at Feministe. I am already emotionally exhausted from this, so I will not cross-post this at Feministe.

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.