13 July 2015

How Not to Plan Disability Conferences

How Not to Plan Disability Conferences
(or, how to be an ableist asswipe while planning a disability conference)

1. Form a planning committee without any actually disabled people on it. You’re parents/researchers/professors/professionals. You know what you’re doing, and you can do it without letting those pesky little personal biases get in the way. 

2. Alternatively, form a planning committee with your one token disabled person, so you can honestly say that, well, there was a person with a disability in the room. You have to remember all those overly-sensitive people with disabilities who’ll start hyperventilating about “inclusion” if you don’t do the politically correct thing. Bonus points if you get a token disabled person who already believes you are the Experts God Put On Earth on disability.

3. Produce an initial list of speakers/presenters without any actually disabled people on it. Don’t worry, you already know who all of the experts are on the conference themes/topics/strands. It just so happens that none of them are disabled. But hey, it’s the loving (non-disabled) family members, the dedicated (non-disabled) researchers and professionals, the prominent (non-disabled) professors who’ve done so much work for so many years to improve the lives of people with disabilities. They should be grateful you care so much. 

4. Ignore the list of disabled people with relevant expertise on the conference’s themes/topics/strands that the token disabled person provides. You don’t know most of those people, and even if the token disabled person does, they must not be very important or accomplished because you would have heard of them if they really were. Besides, you’ve already pretty much decided who the speakers will be. You just have to make the token disabled person feel like someone listened to their opinion before you proceed. 

5. Insist that none of the disabled people suggested should be presenters because “They’re not like my child/client/student!” (otherwise known as “They’re high-functioning!”) After all, if someone is capable of presenting at a conference, they must obviously have very mild disabilities—who knows, maybe they’re even so close to normal no one would ever consider them really disabled. 

6. Make sure you mention the one or two disabled people on the list who you actually know. Discredit their qualifications to speak on the conference themes/topics/strands. 

7. Relegate disabled speakers to the “inspirational personal story” presentation. You should ignore any of their interest or ability to speak about public policy, best practices, recent research developments, advocacy strategies, theory, etc.

8. You can also consider having disabled people co-present alongside non-disabled experts. You know, to provide a personal anecdote as a way of legitimizing the non-disabled main presenter’s expertise. 

9. Constantly remind everyone, especially the token disabled person, that you have a very limited budget, and can’t afford to bring in any speakers from outside the local area where the conference is happening. Then insist on bringing in one of the non-disabled presenters who lives so many states away it’s definitely a long-distance trip. 

10. Dismiss one of the disabled speaker suggestions because you had to pay them a lot of money the last time you asked them to speak. Obviously any other disabled person asking for money is clearly asking for an unreasonable and impossible amount. Besides, it’s not like they need that much money. Don’t they have families to mooch off of and SSDI to collect or something?

11. Create a list of target audiences for your conference that doesn’t even include people with disabilities as a target audience. Reluctantly add them in later under “families.” Some of those more high-functioning people with disabilities might show up. And of course, some families will have to bring their lower-functioning relatives with them, but it’s not like they’d be listening or anything. 

12. Remember to keep telling your token disabled person that they are very high-functioning and don’t know what it’s like to have severe disabilities. Emphasize this especially whenever the token disabled person tries to get the rest of the committee to bring in actually disabled speakers. Don’t forget—anyone the token disabled person suggests must also be very high-functioning if they could theoretically present at a conference.

13. Repeatedly tell the token disabled person that they’re not listening to what anyone else is saying. It doesn’t matter that they’ve barely been given any time to speak and have mostly been ignored. The fact that they keep harping about more speakers with disabilities (eye roll) is just more evidence that they’re. not. listening. to. you.

14. If you have to include disabled speakers/presenters, make sure your token disabled person at least gets the comfort of a consolation prize. (See #7 and #8.) Don’t worry. It’s for the best.

15. If you post information about your conference online, make sure to only list the name of the non-disabled main presenters for any presentation where you have so kindly thought to include one or more disabled speakers to provide their "personal perspective" as a self-narrating zoo exhibit for you. This makes total sense, of course, since the disabled speakers aren't presenting the main ideas or concepts or research. They're just there to illustrate your fantastic non-disabled expert's points.

16. Remember. You’re being perfectly reasonable. Any possible complaints are unfounded accusations riddled with personal bias, irrational thinking, and emotionally volatile lack of perspective. You have done everything you possibly could. At this point, if you have to just go ahead and make your final decisions without the token disabled person on board with it, you just have to do it. They’re just the token, in the end. It’s not like they’re important or anything, and it’s definitely not like their opinion was actually going to change the outcome anyway. 

--

This is a red rageface sketch. Why? Because THIS SHIT FILLS ME WITH RAGE WHEN IT HAPPENS. Which is often.

--

Afterword:

Seriously, don't do any of these things. If you or someone you know is doing one of those things, stop!

Instead:

1. If you realize that everyone invited so far is not disabled, or everyone on your list of possible speakers is not disabled, ask some actually disabled people -- not just one -- who they think should be invited to the conference. If you're asking disabled people who are *in touch with* disability activism or advocacy or anything disability-related, we definitely know people with disabilities you could invite.

2. It's fine to have parameters by necessity -- for example, you have a small budget so you can only invite speakers who live nearby, or you need someone to be able to talk about specific types of issues -- but don't use these parameters to exclude disabled speakers. Again, if you're asking disabled people who are in touch with the movement, we either know disabled people within your parameters or we know people who will.

3. Don't make exceptions to your financial/compensation/geographic parameters for one or more non-disabled speakers while denying the disabled speakers a) an honorarium, b) travel expenses for out-of-state, c) travel expenses for local travel, d) lodging expenses/arrangements, e) per diem costs, f) any other arrangements that you're paying for. If you catch someone doing this, ask why you are prioritizing a non-disabled person (no matter how awesome they or their work are) over a disabled person.

4. Rethink who is on the planning committee. Don't invite people as tokens -- actually talk to disabled people who you know and ask them to take a substantive leadership role in the planning of your conference. More than one. More than two. And yes, expect some of us to decline because of time, energy, spoons, or other limitations on our ability to engage. So ask several of us. When there are disabled people, and not just one or a handful (proportionate to the total number of people in the room), involved in the planning, a lot of these issues will be avoided.

5. Change the wording on any publicity materials to mention that YES, disabled people are an expected constituency. People with disabilities should always be expected in the audience of anything related to disability, even and especially if the material is geared more toward "parents" or "professionals." Why? Because a.) some of us are part of those groups also, and b.) we have the most valuable possible perspective to give to non-disabled parents, professionals, or what-have-you, since we live every day the things you will be talking about.

6. Another good way to acknowledge and affirm -- and thereby make your conference infinitely more welcoming and inclusive -- that disabled people may want to be present at your thing is to include easily findable information about access and accommodations.

Be up front if you won't have ASL interpretation. It's shitty if you don't but can, less shitty but still in the shitty category if you don't because you can't, but it's always even more shitty if you're not even able to be up front about it and leave d/Deaf and hard-of-hearing potential attendees wondering and forced to ask (which many won't do because they're used to being told no, which sucks for obvious reasons). If on the off-chance you actually WILL have ASL interpretation, please plaster that information everywhere. I mean everywhere.

In the same part of your site or other materials on access/accommodations, make sure to describe whether there is adequate wheelchair/mobility access. Establish a low-fragrance policy. Establish a no flash photography -- and no photography of any kind without consent of those in the picture -- policy. Mention if there will be a break room where attendees can take a break from the stimulation. (Seriously, that's not just autistics; it's also people with anxiety, people with physical disabilities or chronic pain, people with depression, etc. etc. etc.) These are all little things that you can do for minimal cost, and that advertising and talking about publicly can send a strong message that you're expecting and trying to be as welcoming as possible for disabled people.

* (On the minimal cost note, yes, ASL interpretation or CART captioning are expensive, and because interpreters and captioners need to eat too. That's why it is a shitty situation if you can't have ASL interpretation or CART captioning, but because of our current capitalistic system, if you don't have enough money, it's just not a thing that can happen.)

7. When you ask disabled people to speak at your conference, be up front that they are welcome to share personal stories or their individual perspective based on their specific life experiences/childhood/etc. if they want to do so, either as the main presentation (if it's open topic and presenter gets to decide) or as backdrop/details, but that you are NOT EXPECTING a self-narrating zoo exhibit / in-person inspiration porn / a token self-advocate to make the non-disabled people feel good about themselves. In fact, if you're inviting disabled people to talk about anything beyond merely themselves (whether or not they also include information and stories about themselves in the presentation), like public policy, research, activism, or advocacy, you should say that in the invite. Like, "Hey, we know you've done a lot of work on employment issues affecting people with disabilities. Like, you've won awards, worked for orgs, and spent years advocating for better employment supports and shit. Since you're such a fantastic advocate and your work is super important, it would be awesome if you came to speak at our conference in [some place] on [some date] about employment and disability issues!"

There are more professional ways to convey this sentiment than this wording, but hey, if it suits you, feel free to snag it verbatim from here.

8. Listen to what disabled people have to say. Seriously. It's not that hard, but people make it out to be. If someone disabled in your planning group can talk or go to college or has a job or can help plan a conference, don't use that fact to say, "Oh well you know, you're very high-functioning/mild/etc., so you really don't get it." That's shitty. It's ableist. It's invalidating, dismissive, and demeaning. It's also incredibly arrogant. Does someone who went to college know what it's like to not be able to go to college? Well, obviously, no. But someone who has ANY kind of disability, no matter how specifically they are impacted or what specific skills they have or lack, is going to have a better grasp of what it's like to be disabled in ways that have really significant impact on life than you as a non-disabled person. (Here's an excellent blog post about precisely this topic written by someone who does have more impairments than me in a lot of ways, so go read theirs.)

9. Speak up if someone else in your planning group is saying or doing these shitty things. If they're saying them in front of the whole group, and you know they're wrong, and you have the ability to speak out, then do. That's called practicing good allyship. Because if disabled people aren't in the room to begin with, then all we can hope for is someone who's in there to say something. Or if we're in the room, but we're being constantly shouted down or talked over or talked down to in those patronizing voices, it's actually really nice for a change to have someone who will be taken more seriously (i.e. someone not disabled) speak up for us and say, "Yeah, actually, [disabled person here] is right. This is not okay."

10. If someone is objecting to someone presenting because "well they're too high-functioning" and you're supposed to be talking about people who "could never present at a conference," think about these two things: a) a lot of non-disabled, neurotypical people can't present at conferences, because it's just not in their skillset. b) if you're thinking there are people whose disabilities would mean they couldn't comfortably be in a conference space, please start questioning whether i) you mean their behavior (like, humming, or pacing, or flapping, or rocking, or sitting on the floor, or something) would make you uncomfortable and therefore be inconvenient to the non-disabled people in the room or ii) you can rethink how you are designing the whole conference (length and number of breaks, expectations for behavior/seating arrangement during sessions, lighting -- natural or artificial, availability of food/drinks, etc.) so the space would actually be more inclusive for more types of people.

11. Don't conflate disabled people into the families category. A lot of us ARE also parents of disabled kids, or siblings of other disabled people, or spouses or partners of other disabled people, etc. etc., but if by "families" you typically mean "non-disabled family members of someone with a disability," you don't get to lump us in as a subcategory. List us separately. It's totally okay (and I encourage you) to acknowledge that parents/spouses/siblings/etc. can also be disabled themselves, but the category of "disabled people/PWD's" needs to exist on its own as well. This should be common sense if the conference is about disability, but apparently it isn't.

12. If you're offering an honorarium to non-disabled speakers, offer the same honorarium to disabled speakers. Doing otherwise shows that you value the labor of non-disabled people, but don't believe that the labor of disabled people is worth paying us for. That's shitty.

13. Don't have the disabled person/people in the planning group only be responsible for planning a single in-the-back or niche session where disabled people will be presenting. That's just as tokenizing and othering as not having any disabled speakers at all. Strive to include disabled speakers throughout your event, not just at one small part of it.

14. And include the disabled people in the planning group in all parts of the planning, with equal responsibility and decision-making power as everyone else, for all other parts of the conference. If they're not speaking up, explicitly ask/invite them to share their thoughts, and give extra time for them to respond. Give the option of responding by phone or over email or some other medium that's not in-person if the in-person meetings aren't eliciting many comments from them. Create multiple modes of access and participation.

Soooo that afterword turned into almost an entirely separate list on its own. I would apologize for that, but I'm not actually sorry. Pass this one around, because these kinds of conferences, symposia, workshops, training sessions, etc. are planned all the time and way more of the time than not, there are no disabled people involved in planning, there are no disabled speakers, or if there are disabled speakers, they're expected to fulfill the role of self-narrating zoo exhibit / inspiration porn and absolutely nothing else whatsoever. Since a lot of you reading this will at some point have the opportunity to push back against these harmful practices, it's especially important that you do so. We don't want tokenism. We want real representation. 

08 July 2015

"No, but seriously, where are you REALLY from?"

It's not a picture of me, but it's from this campaign by Oxford students of color about racist microaggressions. Photo: Young person outdoors making incredulous face, holding whiteboard that says, "Then... why do you speak such good English?"

Have you ever wondered why non-white people seem to get so upset / offended / angry / annoyed / etc. when you ("you" here usually meaning white people [and yes, Not All White People TM do this], but not always) ask "Where are you from?" or "Where are you really from?" or "So what's your native tongue?" or in general, any question along these lines?

Have you ever been that person? (Maybe, maybe not.) Well, I've been the person it happens to. All. The. Time.

It's okay to want to know what someone's nationality or ethnicity is. It can also be totally okay to ask, sometimes. Curiosity is normal and especially if someone looks or sounds different from you, you might think you're just learning more about them or showing that you're interested in them if you ask about these things. But here's the catch -- for those of us always on the receiving end of these seemingly innocent queries, it's not so innocent or innocuous or random. It happens all the time.

I'm a Chinese American and I'm constantly being stopped on the street by total strangers demanding to know where I'm really from, or whether I speak Korean or Japanese or Chinese, or how long ago I came to the U.S.

Taken individually, these strangers probably don't intend to be malicious or rude or offensive -- or, god forbid, racist -- but taken collectively, the constant stream of messages that I must not belong, that I can't possibly be from the U.S., that I am a public object for other people to examine and interrogate, basically, that I'm something exotic and other-than-normal-human, are deeply rooted in racism. They don't have to be individually targeted or malicious or cruel or specifically intended; they just have to be based in a hidden set of ideas about whiteness being normal and default (and therefore invisible and unquestionable) and Black, Indigenous, Latin@, Mixed, and Asian people as "different [from the unnamed norm of whiteness]" and therefore public spectacle.

Lots of words. (Sorry, I'm working on that.)

What I'm trying to say is, yes, I get that you're probably not trying to be a meanypants bastard if you ask me where I'm really from or what my native language is. BUT, and this is an enormous BUT, that doesn't mean that it's okay. I get these questions all the time, and it's like wind and rain and shit slowly eroding a rock, except the rock is me and the wind and rain and shit are casual racism. (I say casual, not because it's flippant or irrelevant, but because these little things don't fit neatly into a conventional, mainstream understanding of what "racism" is.) Once or twice, maybe it hurts a little. Thousands of times a year, it constantly rubs raw.

So here are some handy Do's and Don'ts for not making a total ass out of yourself, but still being able to ask and learn about other people's cultural identities and communities. (Because yes, actually, learning about and appreciating cultures that aren't yours is a good and desirable thing. Just there are so many wrong ways that people go about thinking they're appreciating and learning, and really, aren't at all.)

Don't say, "So how many languages do you speak, including your native tongue?" when what you're really trying to ask is what the person's native tongue is -- and especially if the only reason you're asking this (and assuming their native tongue isn't English) is because they're not white. (Even if the reason you're asking is because you think or know the person has an accent, it's still rude out of context leading up to it.) Power dynamics also mean that this tends to happen way more to visibly non-white people (whether or not we have an accent) than to white and white-passing people who do have accents.

Do ask, "Do you happen to know languages besides English?" if you're having a getting-to-know-each-other kind of conversation, and you've been asking similar types of questions already (like, what cities have you lived in, do you have siblings, what kind of work do you do if any, etc.). This doesn't single out someone automatically as a person you're assuming isn't "really" from here, or rest on the presumption that the person must know a language other than English.

Don't open a conversation (especially with a total stranger) by asking what someone's nationality/heritage/ethnicity/race is. Especially if you didn't even say "hi" or "how are you" or "what's your name" first. You're probably neither doing demographic research nor taking the census nor booking us into jail. And when you do this, even if this is not how you meant it or thought about it in your head, it sounds like you think we're exotic fascinations, not people.

Do ask about someone's nationality/heritage/ethnicity/race after getting to know them, and after asking if it's okay to broach the topic. (Example: "Hey Saaliha, would it be okay to ask you about your ethnic background?") That gives the person an out ("Sorry, I don't feel comfortable talking about this right now") or an opportunity ("Sure, I don't mind"). This shows that you respect and care about the person you're talking to, and you don't just think of them as an exotic potentially foreign object that exists only to entertain your curiosity.

Don't say, "What are you?" when you want to find out what my ethnicity or nationality are. I'm a who, not a what.

Don't say, "So what's your real name?" if a non-white person introduces themself with a Western-sounding name. Whatever name someone has told you to call them, call them by that name. Period. That is their "real" name.

Do say, "Can you tell me how to pronounce/spell that?" if you're not sure how to pronounce or spell someone's name, especially if knowing how to pronounce or spell the name will help you remember it.

Don't say, "But where are you from?" or "No, but seriously, where are you REALLY from?" when you're trying to find out my ethnicity or nationality. Again, especially if the only reason you're asking this question is because I'm not white and you're assuming that because of that, I must definitely not be from here.

Do say, "Have you lived around here for awhile?" or "So where did you grow up?" or "Have you always lived in [city/town/state/region]?", especially if you're just getting to know someone or you're making small talk at a networking event or a random awkward social situation like waiting at a bus stop. These questions don't assume "otherness" of the person you're talking to, and they let the person share information about themself on their own terms. They're also questions that can apply to everyone, and not only to people already pegged out as "exotic" or "other."

Don't crash cultural events that seem geared mostly/only to people from a specific culture that you're not from, or try to host an event about a culture that you're not from. You may think this is appreciation; it's not. Especially if you're white, white people have always been able to demand space -- from setter colonialism to gentrification to micro-interactions -- and it's incredibly important for marginal cultures and communities to have spaces for ourselves. Also, if you're not from a specific cultural background, you don't get to claim ownership of our culture by running any kind of event supposedly about appreciating or celebrating us -- that's not appreciation or celebration; it's theft and misappropriation.

Do go to cultural events that are open to the general public (or that someone from that cultural community has specifically invited you to) to learn more about cultures that aren't your own. (Do wear culturally-specific clothes if invited. If you're not sure, ask first.) This shows that you appreciate the people from this culture AND that you respect boundaries and different types of spaces.

Don't assume that learning or knowing a language not from your own culture or ethnic background automatically gives you authority to talk about the culture of the people who speak that language, or makes you an expert, or means that you're "basically one of them." It doesn't.

Do learn languages that aren't your own or part of your own ethnic background. Do ask people you have a pre-existing relationship with (i.e. not a random stranger on the street) who speak the language you're learning if it's okay to practice with them. This is a major way to show that you appreciate other people's languages and cultures.

Don't walk up to a random non-white person and start suddenly talking to them in a language you assume they speak based on their appearance/actions. (Examples: Going up to a brown person wearing hijab and then speaking Arabic to them, or going up to a brown person mopping the floor and then speaking Spanish to them.) You have no idea what race or ethnicity the person actually is, and even if you did, that information still doesn't automatically match up with which languages a person speaks, and even if you did guess correctly, it's still a racist assumption.

Do speak to a non-white person in their own language if you can tell for sure that they actually speak that language, and especially if you're doing so because it could be helpful. (Examples: You try to ask someone for directions, and they reply in broken English with a lot of Swahili mixed in, so you switch to Swahili; or, you're calling someone for work and a person answers in Vietnamese, so you start speaking Vietnamese to them.)

Remember, in some contexts, many things can become okay to say that wouldn't be okay to say in others.

For example, if someone tells you that they were born and raised in a country where English isn't a main language, and especially if they say they're trying to practice English or they think they're not that good at it, complimenting them on their English is much more okay. On the other hand, if you see me and notice that I'm not white, and then decide out of the blue to compliment my English right after we started talking, that sends the message that you don't think I could possibly be from here or that I don't belong -- and while that could be true, since you don't know me, there's a power dynamic here that means this really only happens to people of color, not white people.

If a lot of this sounds like hypersensitive politically correct horseshit, let me be first up to tell you that a) it's not, b) you're fantastically missing the point, and c) I don't give a flying fuck about political correctness.

This is about basic human respect and decency. It's about treating me as a person, not an object. It's about not being a douchebag to strangers who did nothing to deserve random douchebaggery. It's about making the people around you feel like it's okay to be around you. Those people might even be folks you care about a helluva lot, so yes, this actually matters.

You have the power to be aware of how you deal with other people. Maybe try rethinking initial reactions of defensiveness or hostility or accusations, and consider that what seems harmless to you is actually very harmful to the other people involved. And yes, I mean harmful. Not "offensive." Harmful.

If you truly believe that all people should be respected or should be "equal" and that differences should be respected, now you have a lifetime of future opportunities to demonstrate it. Every person of color -- born here or not, native English speaker or not, called by a Western name or not -- constantly subjected to these minor degradations will appreciate the one person not doing it.

And that has been your public service announcement for the night.

--

(*Note: This is very U.S.-specific, but could possibly apply to some other Western or European contexts where English is the dominant language -- or with a substitution replacing English with the actual dominant language in said other context.

**Note: Also, suggestions on trying to rephrase things are not meant to imply that anyone who cannot, for whatever reason, consistently or significantly change their language is automatically a bad, evil, terrible person. There are a lot of reasons, including not being fluent in a language, being disabled, being uneducated, etc. that someone might not be able to change their wording part or all of the time. That being said, for those who can change their language I really mean it, language can be an incredibly important vehicle for expressing hidden ideas and attitudes and for changing them.

***Note: Some examples in here assume that the person doing them is sighted. These do apply to sighted people. This isn't to say that blind and low vision people can't do the same things, but also is specifically recognizing how many sighted people use visual cues to make assumptions about race, language, identity, etc.)

19 June 2015

Call for PCA Story Submissions

This post is from a friend and fellow activist, Sarah Rizzuto. 



Call for PCA Story Submissions

Photo: Sarah Rizzuto (using a wheelchair) smiling at the camera.

Hi, everyone,
My name is Sarah Rizzuto, and I’m interested in assembling and publishing a collection of nonfiction stories about personal care assistants (PCAs) and the disabled individuals who employ them. If you have worked as a PCA, or if you have hired PCAs to help you or a loved one, I invite you to submit a personal account of your experiences, whether they are funny, frustrating, frightening, heroic, heartwarming, humiliating or anything in between.
Your submission should be true, no more than five thousand words, and sent to the dedicated email PCAStorySubmissions@gmail.com by September 1, 2015. If typing your submission is not the best way for you to communicate your story, I’m open to assisting you in any way I can. I will also make sure that all stories are kept confidential by changing the names of the characters and authors as requested. I hope that this will allow those who submit to feel more at ease in telling their stories.  
My hope is that I’ll receive enough stories to publish a collection that will target a broad audience. Many readers may know caregiving only through the lens of hiring someone to help an elderly parent; this collection will instead focus mainly on PCAs’ work with younger disabled adults.  All stories are appreciated.
Although I have editorial experience, I have not declared myself editor of this collection. I’m open to having co-editors and would love to hear your suggestions via email. The details will be worked out later. At this time, I’m accepting stories and will go from there based on your response.
My interest in this topic comes from personal experience. I was born with a disability called Cerebral Palsy. Ever since I was young, I’ve needed assistance with my everyday care. These include tasks such as showering, dressing, preparing meals, housekeeping, and being driven places. Although my parents still assume a caregiving role occasionally, I now, at the age of 33, live on my own. Even as I write “on my own,” I know that implies that I now accomplish everything without help. This simply isn’t the case and never was.
From elementary through high school, various adults were employed by the school systems to assist me. At nineteen, I entered college and took on the role of employer. Although I had no experience hiring, training and firing PCAs, I had to manage the whole experience. My quality of life was at stake. The young women I employed throughout college were diverse in their personalities, abilities and work ethics. Many of them were close to me in age. College was our common denominator, which meant that in the midst of laundry and grocery shopping were nights filled with break-up monologues, textbooks and bureaucracy. I knew that despite the craziness of college and juggling caregivers who were constantly late, blatantly rude and often tipsy with the ones who were punctual, respectful and creative; it was nonetheless a protected environment. PCAs were within walking distance, I had overnight care, and counseling services and on-campus police were a phone call away.
After finishing ten years of college, I filled out fifty applications to get on waiting lists for accessible housing. I considered myself lucky that I had to wait “only” two and a half years for an apartment. I then had to wait several more months until I interviewed and hired seven PCAs, covering all my shifts. Now, my pool of applicants is not confined to a college campus, and support isn’t as easy to reach. But just like in college, there are the moments with my PCAs that bring smiles, tears, uncertainty and complete appreciation.
Caregiving is more complex than just the stories of the disabled folks being cared for and/or directing their lives. It’s a nuanced relationship between the caregiver and the disabled individual. I look forward to hearing your stories and honoring your voices.
Peace and access,
Sarah
 
 




   

03 June 2015

The best advocates for people with disabilities

Content/TW: Discussion of ableism and abuse.

The best advocates for people with disabilities are other disabled people. Not their non-disabled parent(s), not their non-disabled teachers, not non-disabled researchers and professors, not non-disabled support or care workers or clinicians or therapists or professionals. Us.

(I preface these possible relations or positions as non-disabled because that is the relevant marker here. Obviously -- or I hope obviously, if you read this blog -- disabled people can be any or all of these things.)

If you tell a disabled person that their advocacy isn't effective because they're too emotionally involved or personally vested, what you're saying is that we should forget the trauma and harm visited on us for a false specter of neutrality -- a neutrality that derives from white masculine "rationality" and neurotypical supremacy.

The idea that intellectual, rational, neutral, distanced thoughts, speech, or advocacy are the best kind of thought depends on a way of expression that silences survivors, devalues femininity and neurodivergence, and replicates white dominance over emotion.

Let me make this plainer.

The disabled adult who survived years of abuse by classmates knows better than anyone else what a disabled kid abused by classmates in school is going through, understands without having to say anything the exponential harm created when teachers refuse to punish the instigators and only ever and always punish the victim for reacting, knows exactly what it is to be disbelieved by parents, targeted repeatedly by those pretending to be friends, forced again and again to return to the same doors.

The disabled adult who survived involuntary treatment aimed at fixing their supposedly broken, inferior brain or body knows better than anyone else what a disabled kid whose own parents who claim to love them keep making new appointments with the same doctors or therapists for the same marathon sessions of pain where no one believes what the kid says about their own feelings, where they tell them over and over again that they're hurting the kid for their own good, knows exactly what it is to be told that if only they stopped talking like that or moving like that or being interested in that then other people could accept them, or at least a fake version of someone who never existed but who everyone else believes is better than who they are.

The disabled adult homeless, disowned, out of work, stuck at home or in bed, body flaring up in pain, shaking, triggered, self-harming, using, incarcerated, committed, still healing from childhood abuse, isolated, taught to hate themself and everything about themself -- that disabled adult is exactly where others have been, has been where others are, knows their own almost as well as they know themself.

We don't need to explain ourselves to each other. We understand the forced eye contact, the leg braces, the never being allowed to say no, the someone else always being the expert on our own bodies, the always surviving new traumas, new violence heaped on old. We get it.

We take care of our own. We are fierce. We don't need your acceptance or your approval. You can keep trying to relegate us to your tokenizing idea of what you think we should be doing but we know exactly what it is. It is a lie. You would have us either pretend our experiences don't exist so you can treat us as really just like you (that is, not really disabled) or you can co-opt our experiences into a more palatable, easy to digest, non-threatening version for your daily dose of inspiration porn (enough to remind you were disabled but not so much that you remember the power of who we are).

No one knows better than us. No one can advocate better for us than ourselves. In any context. This is precisely why we need more sick and disabled people as nurses, as doctors, as healers, as lawyers, as care workers, as PCA's, as therapists, as teachers, as trainers, as lobbyists. Living fiercely, living proudly, relying on the strength of who we are and what made us to possibly be the support for each other that we never had from anyone else.

Don't fucking tell us that our experiences make us "too close" to the issues. If you have to resort to that, you are part of the ableism problem.

26 April 2015

Don't listen to them.

Sometimes I am asked, if I could say anything to my younger self, or to an aspiring organizer just starting out, what would I say?

This is the answer I give. This is what I wish I had known. This is what so many of us need(ed) to have said to us:

People in power will say anything to silence you. 

They will play to your emotions and guilt you. They will make you question whether anyone you love truly supports or understands you. They will tell you that you'll never get anywhere with whatever tactics or tone you're using.

They will tell you that what you want is unrealistic or impossible. They will tell you that you don't really know what you're talking about. They'll hit you with numbers. They'll hit you with condescension. They'll hit you with deeply invasive personal attacks.

They'll water down everything you demand and try to co-opt your movement. They'll even hit you with flattery and try to win you over.

Don't listen. 

And, just as important, as scary, as necessary to know:

People in community with you will hurt you. 

They will question your values. They will make you doubt your own politics and faith. They will try to turn your friends and fellow activists against you. They will take the language of social justice and twist it to their own ends.

They will attack you with bitterness and rage for even the smallest mistakes. They will make it all about them instead of about the community or the movement.

They'll come down on you for falling in love with theory. They'll come down on you for not understanding theoryspeak.

They'll shame you for every action you don't or can't participate in. They'll tell you to get out of the movement, that you never belonged in the first place.

Don't listen.