Category Archives: disability

Oct 07 2010
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disability, shameless fangirling

Things That Make My Life Easier: Black Phoenix Alchemy Lab

[Image description: Four bottles of perfume in front of and resting upon some books; the bottles are labeled “Australian Copperhead,” “Banded Sea Snake,” “Cottonmouth,” and “Asp Viper,” respectively. Image courtesy of Black Phoenix Alchemy Lab.]

Today, I am taking a page from amandaw’s awesome series “Things That Make My Life Easier” and have chosen to spotlight the fantastically scented goodness of Black Phoenix Alchemy Lab. As a person with chronic pain, I have found that certain things having to do with the five senses that take my mind off of my pain — even for a few minutes — makes dealing with pain and fatigue much, much easier. While I am unsure of the scientific veracity of perfume oils and their use in general life-improvement for folks with pain issues (in my case, fibromyalgia, which for me usually causes intense muscle pain and moderate to severe fatigue), I have personally benefited from wearing the complex and often surprising essential oil blends in which the Lab specializes. While smelling nice certainly won’t bring my physical pain down from, say, an 8 to a 1 (on a scale of 1 to 10), many of these blends have helped me to relax, focus on a different sort of physical sensation that is not abjectly, horrendously painful, and generally be more comfortable as I go about my day.

Besides a “General Catalogue” consisting of hundreds of scents—all inspired by a diverse mix of people (comic-book heroes and heroines; H.P. Lovecraft), places (the “Wanderlust” line, which offers scents inspired by famous locales) and things (love [image on page is NSFW], myth and fairy tales, classic art, religion and spirituality, and Alice in Wonderland, to name just a few)—BPAL also offers Limited Edition blends. Currently, they are offering their annual Fall/Halloween scents; if you’ve ever wanted to smell like an apple orchard, fall leaves and smoke, or Halloween candy, one (or more) of these oils may be for you.

It is next-to-impossible for me to pick favorite blends, as mine seem to change by the day. There are a few that I consistently utilize, however: Blood Kiss is a bizarrely dark blend of vanilla, clove and cherry that I’ve been wearing for years (I’m on my third bottle of the stuff). Absinthe is effervescent, minty and (obviously) boozy. When I want to smell sort of like a head shop sans the moldy undertone, a couple drops of Sin do the trick. Aquatic scents seem to be my most-used “category,” with the salty, swampy Bayou being the one that I reach for most often, tied with the Limited Edition Sturgeon Moon (the latter is no longer available, unfortunately). The smoky, slightly citrusy goodness of Carnaval Diabolique (part of a sprawling LE series of the same name) makes for a great late summer/early fall scent, as does the sharp, lavender-tinged Casanova.

Of course, the very fact that I wear essential oil perfumes brings up another issue — how to be sensitive and accommodating to fellow PWDs who may have scent sensitivities, allergies, or who may have otherwise painful reactions to scented stimuli. When I’m planning to be out and about, I tend to wear a drop or two at most, usually applied with a q-tip, and allow ample time for the oil to dry before I leave the house; this is not a perfect solution, but I am still figuring out how to balance the benefits that I personally get from wearing these amazingly-crafted oils with the needs of other PWDs whom I may encounter in public.

[Originally posted at FWD.]

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Sep 10 2010
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disability

Reactions, part 1

[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]

I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.

Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.

The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.

My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.

When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.”  The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.

Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.

The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.

And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.

For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).

[Cross-posted at FWD.]

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Jul 11 2010
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cartoons, disability, fibro, wat

Detached

[Description: Line drawing of a woman in a bed, sitting up against the pillows as her eyes—popping out of her head—focus on her body parts, which have detached from their sockets and are floating around the room.]

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Jul 08 2010
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disability

Film Review: HBO’s “Kevorkian” (2010)

Director Matthew Galkin’s documentary Kevorkian (aired on HBO on June 28th; also available on YouTube) is one of those documentaries that I felt nervous about watching, mostly because I was extremely skeptical that it would be anything other than a massive apologia for the man colloquially known as “Dr. Death” in the U.S. news media and among much of the North American public. I was also concerned that my own complicated views on physician-assisted suicide would impact my feelings on whether this documentary was worth the time and emotional energy spent watching it. Like many documentaries, it is a difficult film to watch. It is not uplifting by any means. Parts of it are brutal. Parts of it are frightening. That said, however, I am ultimately glad that I watched this film — not because it “humanizes” Jack Kevorkian or acts as an apologia, but because it deftly explores issues of ethics, law, the power of the media, and legacy.

The entire film is framed by Kevorkian’s ill-fated 2008 bid for a congressional seat representing the state of Michigan —  his platform, as the film shows it, leans heavily on the Ninth Amendment — but his congressional hopes are not the most interesting or thought-provoking part of the film. Almost paradoxically, the most interesting part of this documentary is the fact that Kevorkian does a pretty excellent job of not coming across as particularly sympathetic, something that a viewer might not glean from the film’s trailer.

Here, Kevorkian comes off as one majorly self-aggrandizing guy, and it seems like the director does not have to work very hard to make viewers see that Kevorkian can be difficult to deal with. He often seems so enamored of his own ideas, and his own legacy, that he focuses on these things to the detriment of his friends and allies — and, ultimately, his cause. This becomes most clear in one sequence late in the film, where a longtime supporter of Kevorkian’s publicly disagrees with him at a small town hall-style meeting; Kevorkian responds not by answering the man’s questions regarding the Ninth Amendment, civilly discussing his differences of opinion or why he feels the way that he does, but by yelling at him and then forcefully spitting, “I wish you weren’t here [at this meeting]!” Kevorkian’s behavior during the Thomas Youk case is also ethically questionable, as he videotaped Youk’s death in part with the aim of bringing more publicity and media attention to himself and his cause, even though the videotape would most likely put Kevorkian in prison for murder; as one journalist phrases it, Kevorkian wanted to start a “national debate on [physician-assisted suicide]” by appearing on 60 Minutes with the full tape of Youk’s death. The 60 Minutes footage, both of the Youk tape and Kevorkian’s interview with correspondent Mike Wallace, shown in the film is nothing short of chilling; when Kevorkian intones, “Either they go, or I do,” one may pause to consider that a potential “win” of this particular fight would be built on the bodies of those he has “assisted.”

Unfortunately, no one who opposes Kevorkian’s views on assisted suicide — or his political platform, for that matter (with the exception of the former supporter mentioned above) — gets any screen time whatsoever, and this ends up making the film as a whole seem extremely one-sided. As a viewer, I would have been interested in seeing people who oppose Kevorkian’s method and message, particularly since Kevorkian’s former lawyer simplifies the opposition to him, and physician-assisted suicide in general, by casting any opposition as right-wing religious reactionism versus “enlightenment,” thereby erasing the many disability activists who have criticized Kevorkian and his methods. And while Kevorkian certainly does an admirable job of not coming across as anything other than a guy who overestimates his own importance, or gives any consideration to the reasons why some might oppose his methods or message, the film’s lack of any substantial exploration of opposing view(s) was disappointing.

Despite its flaws, Kevorkian is an interesting, thought-provoking and disturbing documentary. As someone who has complex personal feelings about physician-assisted suicide and its ethics, I am of the opinion that this documentary provides a riveting look at the life of a man whose actions have, for better or worse, managed to galvanize the discussion of physician-assisted suicide, and related issues surrounding medical ethics, the media’s role in medical issues, life, death, and quality of life in the United States.

Commenting Note: This is NOT a thread in which to debate the “rightness” or “wrongness” of physician-assisted suicide in general. Please keep your comments to either the issues discussed here, those brought up by the Kevorkian case/media coverage/related topics, or those illuminated in the film. The entire film is available in 9 parts on YouTube [trigger warning for in-depth discussion of PAS].

[Originally posted at FWD.]

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Jun 25 2010
2 Comments
ableism, cartoons, disability, FWD

The Inner Critic

[Warning for possibly triggering content regarding mental health, specifically depression.]

I’ve been reading a fair number of how-to creativity books (yeah, I know, creativity is not something you can “learn” from a book) recently in preparation for a long-term project, and one thing I have noticed about some of these books–and a lot of the “advice” floating around out there about creativity–is the notion of the “inner critic.” The inner critic, according to some Professional Creative Types, is the voice that tells you that you are not creative, that you can’t write, or draw, or paint, or accomplish whatever creative project you want to. The inner critic is supposed to stand in for everyone who’s told you that you are a crappy artist, that your creative pursuits aren’t good enough, and all of that fun stuff that apparently wasn’t there when you were a kid. And, in the course of becoming truly creative, you are supposed to silence your inner critic.

This got me thinking, however: What if that critic was there when you were a kid? What if the inner critic is, well, part of you, and you cannot “just silence” that part?

One thing that I really don’t talk about publicly (on the internet or off) is my history of major depression. There are many reasons as to why, and I think that those might best be saved for another post. However, there is something that really bugs me about the “inner critic” model of creativity: it does not take depression, anxiety, or other mental health conditions into account. What if that voice in your head has been there for a while, and is an active part of your mental health issue? It’s not so easy to turn off that voice that tells you that you suck, or that your art or writing is a bunch of crap, or that you will never amount to anything when that voice is there because of a mental health condition.

There’s another assumption in writings about the importance of “turning off” the inner critic, which is that all children have a magical reserve of resilience and that is why they are so creative. These children simply don’t care what anyone else thinks, and the Creative Adult must recapture that sense of adventure by silencing the inner critic! It sounds so easy! But what of the depressed child, or the child with mental health issues? As someone who had depression issues as a kid — and still does — I question the supposedly “universal” applicability of this whole inner critic business, the assumption that it can be turned off like a damn light switch, after which we will all Recover Our Childlike Capacity For Creativity, or something.

I remember having my own Inner Critic as a kid, and it was not fun. Certainly, I did have years where I had that sense of Childlike Creativity and Wonder, but those were also interlaced by a voice in the back of my mind that would tell me awful things. And it never left, after a while. It would hiss: You do not belong. You are weak. Your bum leg is punishment for something, and you sure as hell aren’t going to “make up for it” with your stupid cartoons, give me a break! You think you’re going to be popular because of your cartoons? Because of your writing? Please. You are worthless, and also none of the other kids like you. Your art is just a hobby, nothing more.

Then, once the depression came on the scene, those little hissings became, well, much bigger. They’d been there when I was a kid, no doubt, but with major depression, they stuck in my brain like a particularly awful tape loop that just couldn’t be turned off. Things with my depression are much better now — as they have been for a few years — but I am always, always on the alert in case it comes back full-force. My depression not totally gone (nor do I expect it to be), but I manage it with care. And the “inner critic” that artsy self-help types slam? She’s still there, and I think she will be there permanently. The trick, for me, is learning to live with her instead of assuming that silencing her is an easy step.

[Originally published at FWD.]

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Jun 14 2010
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disability, feminism, feminist blogging, media and popular culture, Music, my politics, pop culture, privilege

Hidden costs: On Lilith Fair and subtle exclusion

HEY LADIES AND THE FOLKS WHO LOVE THEM, REMEMBER LILITH FAIR? I certainly do, as I once had visions of attending it — visions which, like the proverbial sugar plums-dancing-in-childrens’-heads-come-December, did not materialize. Now that I think about it, this probably ended up being a good thing.

Well, the women’s music festival that isn’t that other one (and Lilith Fair, to its credit, does not have exclusion policies based on what gender an individual was assigned at birth) is back and it is BIGGER THAN EVER. It is going to be in my neck of the woods (the venue, however, happens to be about two hours away from where I live) rather soon, and it is going to be stopping at a pretty large outdoor arena that also happens to be built on a landfill.

As will quickly become apparent, I’m not a huge fan of Lilith Fair; I have some highly specific problems with it which, gasp, are not all about the music! With regards to the actual music, I don’t want to just throw my hands up from my keyboard and be all UGH SOME OF THE ARTISTS ARE SOOO TERRIBLE AND BORING NEENER NEENER. I used to rely on that sort of argument with some frequency, and, let me tell you, not doing that is so much more exciting, because it means that I can write long-ass posts on things that I find problematic in some ways (and, often, not completely without merit) instead of going THIS TOTALLY SUCKS WHY WOULD ANYONE LISTEN TO IT BAH and having that be the end of my opinion. I also don’t think that wholesale boringness, or totally sucking, or being the musical equivalent of Grocery Outlet (in which you think you are getting a good deal, but really you are just buying close-to-expiration-date food items — and, for God’s sake, be careful with those reduced-price dairy products!), is the case with many of these artists. I may not be a fan of, say, Norah Jones, but I can acknowledge that she is very good at what she does; she has struck a chord with folks for a reason that may, actually, be deeper than the popular music industry’s tendency to latch onto a trend and push it until it becomes the peat moss in the ground of modern music.

Here’s one big issue I have with Lilith Fair, in terms of social inclusion: Despite its attempts at “diversity” in its most recent incarnation, the roster of performers for 2010 is still fairly…white. And middle-class — just look at the ticket prices, for one thing. And, presumably, able-bodied. And, tangentially: if Sarah McLaughlan were diagnosed with chronic fatigue syndrome or something, you KNOW she would be all over raising awareness of that condition like hippies on a drum circle, perhaps appearing in a high-profile ad campaign of some kind. She is great with that kind of “raising awareness” stuff — see, for example, her tear-inducing recent ads for the ASPCA. While I do have problems with the whole “raising awareness” activism/charity model for a lot of things — including for PWDs and people with chronic illnesses/health conditions — overall, I respect Sarah immensely for her activist work, my own issues with the charity model of activism aside.

However: even if some of the artists whose music I actually enjoy (Erykah Badu, Sia, Janelle Monae, or Gossip, for example) were going to be on the roster for the day that the Lilith caravan-slash-sleek tour bus makes a stop at the legendary Landfill Amphitheater, I still would not go. Because the roster would still seem, to me, pretty white, middle-class, and abled — and, more crucially, it seems made for that exact kind of audience.  It is, ultimately, a kind of weird “elitism” that masquerades as Lilith Fair’s (promoted) status as a Music Festival For All Women.

I do think that this sort of “elitism” that Lilith Fair is promoting is almost painfully subtle. It is made for an audience that can, first and foremost, afford to be there —  Lilith Fair offers several ticket packages, from the nosebleed $36 lawn tickets to $756 for something called the “Diamond Package.” I am one of those people who usually gets nosebleed tickets, because most of the time, that is the only thing that I can afford. Of course, only a small percentage of concertgoers will probably buy the “Diamond Package” tickets; more folks will buy the less-expensive tickets. But even with the “lower end” tickets, one must still purchase them and, in all likelihood, pay for a bunch of things like processing fees and all that, which of course ups the prices of even the “inexpensive” tickets. If you can afford to pay those “convenience fees,” you’re good.

If you can’t, or if the fees put you off of buying even the “reasonably priced” tickets, the festival may not look so reasonably-priced after all. For some (middle-class) folks, getting concert tickets may not be that big of a deal, but what happens to those folks who aren’t middle class, and may have to do things like take time off of work to go to this festival? There are also probably many hidden costs that I am not considering here, such as transportation. Simply put, the cost(s) of going to a “diverse” and “inclusive” festival that unproblematically presents itself as For All Women can add up to way more than the ticket price.

The ability question is also worth considering in-depth; as far as I know, Lilith Fair does not specify any policies or instructions on its website for people with disabilities who may need special seating or other accommodations. This is problematic for several reasons, the most obvious of which is that the message seems to be, in the words of my friend and awesome FWD co-blogger Anna, that people with disabilities “don’t exist.” In Lilith Fair’s super-woman-power-goddess universe, women with disabilities are left out, thereby not exactly contributing to LF’s supposed standing as a music festival For All Women. If you are leaving women with disabilities out, you are leaving some women out of your musical utopia. Certainly, accessibility policies will vary from venue to venue, but because LF is so huge and is of such note, I believe its coordinators have a responsibility to reach out to people who have, traditionally, been ignored, left out and/or forgotten about by major music festivals — and that group includes people — women — with disabilities.

If Lilith Fair wants to be truly radical and different, it will take steps toward being for a wide variety of women, and people, instead of simply promoting itself as such. There is a huge difference between presenting an event or group as being For All Women and actually taking steps toward real inclusion. So, Lilith Fair coordinators, what are your policies on wheelchair accessibility? Interpreters for the hard-of-hearing? Seats for people who can’t do the “standing room only” thing because of chronic pain or mobility issues? These, of course, are just a few questions about accessibility; there are many, many more facets of accessibility that I have not mentioned here.

One final note: Before anyone accuses me of “not supporting women musicians” because of my issues with Lilith Fair, my fannishness and support of many women musicians is fairly well-documented — among them Tori Amos, Alanis Morrissette, Nina Simone, Jesse Sykes, and many, many others — so that argument will not fly with me. In my view, the whole “you’re not supporting women musicians if you have issues with Lilith Fair!” is the penguin of arguments about women musicians — it may be cute and kinda funny at times, but it cannot fly. And in my view, neither can Lilith Fair’s consistent trumpeting of itself as For All Women, when it still has so far to go.

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Jun 10 2010
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bad ideas, cartoons, disability, fibro, wat

OF COURSE it’s time for meds, if a rocketship crashes into your head

[Image description: A line drawing of a young woman with a quizzical facial expression who has a rocket embedded in the left side of her head. A thought bubble to her right reads, “It’s time for Vicodin.”]

Ink on paper, 2009.

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Jun 04 2010
10 Comments
cartoons, disability, feminism, feminist blogging, media and popular culture, pop culture

Crowdsourcing: GRAPHIC NOVELS! Edition

Here’s the scoop: Despite the fact that I am sort of a cartoonist and “into” graphic art, I am, sadly, not totally on the up-and-up when it comes to comics and graphic novels! So, I need recommendations from you fine folks for a project that I will be starting on rather soon. I am mostly looking for autobiographical comic/graphic novels, comics/graphic novels having to do with illness or disability, race, and/or gender and sexuality (I prefer non-fiction for these categories),  and comics/graphic novels that cover awkward situations in childhood, adolescence, or young adulthood (fictional or not).  Also, how-to books (such as Eisner’s Comics and Sequential Art, which I already own and have dog-earred to infinity) are also welcome as suggestions, as I will definitely need inspiration for writing a long-form graphic piece.

Here’s a list of stuff I already have that is in one or more of the above categories: One! Hundred! Demons! (Barry, 2002); Fun Home (Bechdel, 2006); Funny Misshapen Body (Brown, 2002); The Spiral Cage (Davison, 1992); Cancer Made Me a Shallower Person (Engelberg, 2008); Jokes and the Unconscious (Gottleib and DiMassa, 2006) Stitches (Small, 2009), American Born Chinese (Yang, 2006) [thank you Anna for reminding me of this one!].

PLEASE, SUGGEST AWAY!

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May 01 2010
5 Comments
ableism, disability, feminism, feminist blogging, fibro

BADD 2010: “Exhibition”

For Blogging Against Disablism Day this year, I thought I’d share a poem that I wrote a while ago that I haven’t shared until now. I was going to turn it into a spoken-word piece but never got around to it. Better late than never, I suppose.

Exhibition

On my side
side/ways
eyes brain neck
spinning along with
everything else
and I haven’t even been drinking

this is not a workout
and yet, I am sweating
the body over (re)acts
does not know quite how to
respond
and I wish I
could say to
every non-believer, every “skeptic”

everyone who’s ever asked:
what’s wrong with you
why do you walk like that
is something the matter with your foot
what is it
why aren’t you getting better
why isn’t your attitude more positive
why can’t you

almost always accompanied
by one of these:
at least you can walk
at least you’re smart, so you can deal with this
at least you’re not homeless
or starving
or living in a Third World country
you’re luckier than most
how bad could your pain be?
just take some aspirin
stop complaining
why
why
why

for every
you should take vitamins
just work through your pain
I have pain, too
you’re too young to have something
like that
why are you so bitchy
that I hear
I smile a little bit, inside

because: someday
many of these people
will also know
pain

but for now
this is my reality
and I wish you could see it
feel it
for only a minute
and then maybe you’d
think before you
talk at me
or offer meaningless platitudes

every word that exits your mouth

random stranger,
friend of a friend,
asshole on the street who tells me to smile
because it can’t be that bad
every word
means less to me
than I do to you

I’m not your vehicle for
public service
I am not to be used
to show the world

what a great “liberal,” progressive kind person you are
or to be subjected to
your pity
masked as concern
so please step out of
my way
once I can stand, that is
for now—lucky for you
I am confined to vertigo
In my own carpeted purgatory

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Apr 25 2010
5 Comments
disability, feminism, feminist blogging

Balancing Act

[Cross-posted from my Tumblr, which features a lot of things–like, for example, pictures of puppies and YouTube videos of Tori Amos–other than blog posts. Edited for clarity and bizarre sentence syntax, and expanded a little bit. Please try to follow the comments policy.]

This is probably going to sound scattered and weird and nonsensical in parts (I am supertired and tried to take a nap earlier, which did not happen). I would not be surprised if I lost some readers over this. I may regret posting this later. However: It’s important, and it is worth noting that this post is not meant to address one person or group of people in particular, because there have been, actually, several fairly recent incidents (again, spoiler alert, SEVERAL!) that have inspired this post.

I have a major Thing with being told that I am excluding other people, letting them down, and/or not taking them and their needs into consideration enough, both because I know from experience what it is like to be actively excluded in a painful, gross manner (thank you, mainstream U.S. feminism!) and because I have some Personal Issues with codependency (which used to be a hell of a lot worse). And yes, telling people that that they are being exclusionary/inconsiderate can be very useful at times, so my point is not to say that you should never tell anyone that they are excluding you (I mean, look at what happened with the Evelyn Evelyn thing in part because of my inability to shut up and my general verbosity!). And I know it’s going to sound like I am making it All About Me, which I do not want to do, but there are times when you have to put things on the table to make them clear, or at least intelligible. Or something. I don’t talk about my history of major codependency issues very publicly, mostly because I am concerned that a.) it will sound whiny or like I am trying to excuse the times that I have screwed up (of which there have been MANY, by the way, and since I am not perfect, these times will continue!) or b.) showing more vulnerability than I have in the past will just give trolls more ammo.

I just don’t know how to balance my own need for a “safe space” as a disabled woman on the internet with demands that I cover x issue, that I need to work more on y,  people saying that I am not focusing on the right things, or not working hard enough or jumping high and gleefully enough through some rather arbitrary hoops that have been put up, or that I am excluding people. But sometimes there are comments that I do not let through because they make me feel…just off, or they make my pulse go up a notch (is that a trigger sign?). This is not anyone’s fault, of course. I am inclined to blame myself and say stop it, you are being oversensitive. And feedback is something that I find useful. But I have spent years of my life doing many, many things and taking the shit for other people without also considering myself or taking care of myself, and it did not get me much other than chronic pain (I don’t know for a fact that my pain has been caused by this alone, but I’m pretty sure it was a contributing factor).

Here’s my major point: There is more than one way to be a feminist. There is more than one way to be a PWD. In one area of my life, I am attempting to (though not succeeding?) help make a space for as many people as possible while also doing my best. I know that neither intent nor effort “excuse” in any way what actually comes out or happens. There’s got to be a method that respects the many disabilities and the many feminisms out there without placing an unfair burden on any of the parties involved. I don’t know what that method is. Things will collide. Misunderstandings will occur. I am not adverse to this, but what I am adverse to are insinuations that I am not working hard enough, or that I am letting our community down (please remember, I am just one person!), among other things.

Other major point: You don’t know. There are a lot of things that I do not talk about on my blog, for various reasons (including, ya know, privacy reasons). There are a lot of things that you don’t know. There are a lot of facets of my experience that you cannot or do not see.

I am working. You might not just be able to see it, or I may not choose to give you all of the details.

I am listening. Maybe a little too hard.

I am trying to take other peoples’ needs into consideration and work things out, more than they will ever know.

And it’s fucking trite and cliched to say this, but: I am a person, too.

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