this is why i talk about this stuff

hey all,
please take a few moments to read this, especially (but not only) if you consider yourself an “ally” to disabled folks, or just to me.

The reason i continue to talk about inaccessibility is that inaccessibility is but one (though certainly not the only) direct outcome of ableism. It is a huge, inescapable one.

It is part of the oppression of large swaths of variously disabled folks.

And it negatively impacts me every day. It marks me. It does real damage to my heart, my emotions, my opportunities, my health, my communities, my body, my trust, my will to keep going, my liberation. It damages me in ways that non-disabled folks don’t understand and often don’t want to understand. It causes me at times to wonder what the point is of going on. It hasn’t killed me yet, but it has killed people in my life, and i have been at times precariously hanging from it. Ableism kills people i love and it may yet kill me. It is no. fucking. joke.

And the fight against it is not a few whiners demanding special treatment.

There are some well-intended people want easy answers [how do we ramp this step? how do we book interpreters? how do we reduce scents? how do we enlarge this space? and so on.] And while these things are critical, that isn’t where this stops. It can’t be. If you think that ableism ends at the top of a ramp, you have gotten lost somewhere.

Ableism doesn’t stop when you tell yourself or your friends that you are an ally. It doesn’t stop when you post access info for your events. It doesn’t stop when you shop for someone who can’t do it, or tidy up or move chairs or pay for interpreters or go scent-free or any of that. Not because these aren’t good things to be doing (they are!), not because these things don’t positively impact folks (they do!), but because ableism just. doesn’t. stop. there.

It is so much bigger than any of that. Ableism is structural, institutional, interpersonal, sneaky, blatant, violent, confrontational, slithery, outrageous, embarrassing, intersectional. It gets funded by government, it gets theorized by privileged academics, it gets used as a promo tool by liberals who want to look good, its buzzwords get used by anarchists so long as it doesn’t mean actually doing anything about it, it gets used by queers who want their parties to look inclusive but who easily fall back on “outsider status” to stick with the status quo.

Read this, soak it in. Ableism is something i and millions of other people deal with every single day. It manifests differently for different folks. Its damages to me are mitigated by or expanded based on my various privileges and oppressions, on my geography, my race, my class, the visual of my physical body, the ways my mental health stuff does and doesn’t manifest, and so on. It includes but is unfortunately not limited to, in no particular order:

  • weird looks on the bus (etc.), being gawked and sneered at;
  • being talked about as though i don’t exist while i’m sitting right there;
  • including having my mobility devices fondled, moved, and otherwise fucked with;
  • being told that the murder of a disabled person isn’t murder at all, but “mercy”;
  • being treated as though i can’t make decisions for myself;
  • being physically assaulted; being spat on; being slapped; being threatened with physical violence;
  • being undermined;
  • hearing the constant undertone and outright statements that the world would be better off without disabled folks;
  • missing out on opportunities to work based on assumptions and realities about my body and/or governmental limitations on earning as a disabled person;
  • being de-sexualized and/or hyper-sexualized;
  • being pitied just for existing;
  • having it assumed what i can and can’t do instead of listening to what i say i can and can’t do;
  • not being heard or believed when i say what i need; having my words re-interpreted through an ENabled filter;
  • how so often even if a space is accessible to me, literally nothing else has been done to make it an actually accessible space which is not totally fucked up to disabled folks (i.e. once you get into the space, what then?)
  • being challenged on my body and my claim to disability;
  • having to lie about certain life situations else those benefits be removed, then being chastised and punished for lying;
  • instead of listening to me share my experience, being told that i have one specific experience, having it be assumed what my experience of disability must be (for example, i use a scooter and crutches, so often people don’t get that i also have cognitive disabilities; i live with PTSD, and ADHD and a CAPD that impacts my hearing, comprehension and so on, as well as chemical sensitivities; people thinking they know who i am based on what they think they are seeing);
  • being told, literally to my face, that it is “such a shame” and “such a waste” that i am using crutches, that i am disabled at all;
  • having people expect that there be one voice, one experience of disability which can be easily articulated and applied and questioned and challenged across all disability experience; being called “the disabled”; being told that my experience of disability doesn’t match up with someone else’s version of disability and so they’re going to go with the other (often more convenient) one;
  • listening to ENabled folks whinge about how HARD it is to be an ally, how much WORK it is to think about accessibility, how hard they work FOR me, and so on, if they do even the slightest thing to address access stuff;
  • not being able to go to most of my friends’/ lovers’ / comrades’ homes because of inaccessibility, and over time finding the connection between us dissolve — if there had ever been opportunity for connection in the first place;
  • having to “prove” my situation, even as someone who “presents as stereotypically disabled” (“visible” or “invisible”, i still have to prove myself, like i said before “sympathy is not a privilege, pity is not a community”, and  being seen is not easier );
  • having other parts of my identity minimized, not believed, always lessened, or used as a means to negate or problematize my place in different communities (for example, being disabled apparently looks bad as an anarchist; being fat makes me a bad disabled person, being queer and trans makes me a bad representative of disability, etc);
  • having my autonomy consistently dismissed, challenged and outright abused;
  • being directly challenged on my worthiness to be, for example, in a college classroom for a few classes years ago, because i got in on disability grants, and that’s apparently getting something for nothing;
  • often being the only one or one of the only people who speaks up about this shit in my own communities, for example on a specific event or whatever, and being treated as a “complainer” a “whiner” a “do nothing” and “entitled” because of it, often by people with significantly more social capital;
  • having people assume that simply talking about this stuff is meant to be a guilt trip against ENabled folks;
  • saying something about access/ableism, having it fall totally flat, then having an able bodied person come and say the exact same fucking thing and be treated like they just said the most amazing wise and revolutionary words;
  • often being the only one like me in the room;
  • doing a shit ton of work on disability or access or whatever, and having able-bodied folks take it as though it was their own, no credit, but demand and expect and receive credit for their own work;
  • if i am expected to do anything at all, being expected to always be nice, patient, understanding, educational, inspiring, helpful, a real resource to able-bodied folks, to be grateful for whatever “allyship” exists, and so on;
  • having to roll the very thin line between asking nicely for what i need and upsetting the ENabled so much that they pull any support they may have offered had i “just been ‘nicer’ about it”;
  • being expected to have no limits, no cut-off points, to always be ready to hear more ENabled confessionals;
  • paying the price for ENabled people’s mismanagement of disabled folks’ lives and needs;
  • being told over and over that i receive unearned benefits so i should stop complaining;
  • being told by ENabled folks “wow! i wish i could ride around in a scooter all day!”, and other ridiculous shit, and them not having to think about what they’re saying;
  • being challenged on my understanding of my own body, my needs, and my right to access those services which might assist me in accommodating those needs;
  • being told by ENabled folks that the ways i speak about ableism may not be “helping my cause”, even after i have spent extensive time and energy on specifically tailoring my work, my attitude, my thoughts on this stuff, even though i consistently bring it back down to personal connection and love of liberation and offer to help when and were i’m able to, often for free;
  • being told that my body is less than, feeling the weight of that less-than, every day;
  • being expected to allow “we thought about it, but we couldn’t make it accessible” to suffice for some kind of inclusion;
  • being told -despite my clarifications- that i expect accessibility perfection, when that couldn’t actually be further from the truth. Having this used as a way to shut down conversation and movement, and being expected to take it on as my doing;
  • being tone-policed when discussing my experiences as a disabled person;
  • being pitted against other disabled folks as a way for ENabled people to not have to work on their shit; and in a familiar twist, being pitted against the needs and work of other disabled people who are oppressed in ways i am not, in order to maintain white supremacy and sexism and so on within this ongoing ableism; to have white disabled folks’ or disabled dude’s or disabled non-sex-workers etc etc etc work prioritized above all else, and to be expected to go along with that because there is so little support out there they figure we should all take anything we can get even when it fucks with other gimps;
  • being expected to understand that ENabled folks are dealing with a bunch of shit that impedes their involvement in accessibility advocacy and so on, but not having that same benefit be extended to me;
  • being told that my basic access needs are “draining limited resources from community”; being told to my face i am a “drain on society”;
  • having people tell me they “don’t see my disability / don’t see me as disabled”, when, like, wtf?
  • and so on…

These are not all, only some, of the ways ableism shows up in my life. It is not all about putting in a ramp. It’s about what exists once i get in; it’s what else is stopping me from getting in; and most importantly,

it’s that there is an “in” in the first place.








12 thoughts on “this is why i talk about this stuff

  1. Pingback: 902/3002: An Activist’s Experiences of Ableism | Disability Courses 2013

  2. I have a three year old with Down syndrome. It’s early in our journey but thank you for saying these things. It will help me better care for, advocate for and try to move mountains to help him (and hopefully, through him, others) gain wider access, and more, respect for his thoughts, feelings and personhood. He’s not very verbal yet and at three, already receiving looks. He doesn’t need ramps etc but he does need inclusion once access is obtained. And not just inclusion…equal inclusion. God bless. Rebecca :)

  3. Pingback: In the News – October 2013 | The PsychoJenic Archives

  4. Pingback: Access to the World: Talk About, Think About and Act Upon 'This Stuff' - Changed Lives, New Journeys

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