29 September 2014

This is What the Empty Room Means

Today, the Georgetown University Center for Student Engagement (formerly known as the Center for Student Programs) hosted a Lunch & Learn training session aimed at student organization leadership. The goal of these trainings is to provide student leaders with knowledge and skills to assist them in running a student organization. Topics could range from strategies for bringing in outside speakers to budgeting for programs or partnering with other student groups. Today's training was to be on accessible and inclusive event planning.

About a month ago, CSE asked if I would be willing to present during a training on accessibility in event planning. I said yes, enthusiastically yes. The outline for the event included an introduction from CSE, a presentation from our disability support services office on Georgetown's policies for accommodation requests, and a presentation from me about the importance of accessibility and inclusion, as well as an overview of the great diversity of possible alterations and accommodations that planners might consider when developing an activity or program.

I arrived on campus today to find the CSE person and the disability services person sitting at one table of eight arranged to form a large square. From the other end of the table, I could smell the fresh pizza in three boxes beside three crates of different types of soda. The tables were clean and polished, so white and bright they made a stark contrast with the muted hardwood floor. The room could easily hold over 100 people, and around 30 or 40 at the tables in the arrangement we had.

But there was no one there. Not one student organization sent even a single representative to attend the training. CSE had received no RSVPs in advance (though they weren't required), and there were absolutely no attendees trickling in even as the clock turned past 12:30.

Photo: Me wearing a white button-down dress shirt and khakis, standing alone inside the Herman Meeting Room with several tables and chairs inside the Healy Family Student Center.

The room was vast and I was small. I was alone in an empty room.

Nothing demonstrates more clearly the utter disregard that disabled people face every day at Georgetown than this. That of literally hundreds of student organizations with hundreds (possibly even creeping into the low thousands) of students involved on their boards or other leadership positions, not even one person deemed it worth their while to learn about access and inclusion.

Of course I recognize that there are many legitimate reasons that people can't attend midday trainings. They have work; they have classes; they have prior obligations; something comes up at the last minute; they didn't know about the specific event. But even if you make the generous assumption that 75% of all students involved in leadership with some or another club would have been unable to attend for some such reason, let's say the remaining 25% could have come and either knew about it or could have been told by someone else in their club's leadership about it. And no one came. How plausible is it that an event run by CSE, the administrative office responsible for oversight of all student organizations, is somehow off the radar of every single club on campus? That every single student involved in any leadership position whatsoever is simultaneously unavailable to attend a one-hour training?

It's not deliberate malice or cold contempt. It's casual indifference.

It takes very little to drive home just how little we matter in the grand scheme of things. And this is what the empty room means. The empty room means that our existence continues to be largely unacknowledged. The empty room means that our ability to participate fully in campus life isn't worth anyone's time. The empty room means that when we talk about improving conditions for disabled people, it's little more than lip service. The empty room means that no one cared enough to figure out how to go or send someone else in their stead. The empty room means that we don't matter. The empty room means another reminder of that fact, clawing into our consciences until we can't forget it for even one second, one brief slip of time.

Georgetown never fails to disappoint me. I attend an elite educational institution that has literally no excuse whatsoever to perpetuate inaccessible environments. Yet for all the talk of cura personalis, community in diversity, being men and women for others ... we continually fail to show even the most minimal concern for the wellbeing or meaningful inclusion of a particularly invisible community on the margins of campus life. The empty room means that the road ahead will be tortuous and long, that my work will never be done, that an entire collective of seven thousand-odd students, and thousands more faculty and staff, every one of us, remain complicit in this complicated system of ableism.

The empty room means that our fight is less against willful hate and more against the easy ignorance cloaked in the privilege of never having to live a disabled experience -- the privilege of never being guilted and shamed into going to an event that you lost the spoons for but had requested an interpreter for beforehand -- the privilege of never having to decide days in advance whether you will go to an event or not -- the privilege of never having to wonder whether you'll be able to access the handouts, presentation slides, or speech of the presenter -- the privilege of not worrying whether other attendees' perfumed products will induce an allergic reaction, meltdown, or physical illness -- the privilege of not sitting on edge in case something triggers a seizure -- the privilege of not thinking about whether something will surprise you by triggering a panic, anxiety, or PTSD attack -- the privilege of not having to think about whether you can even get into the fucking building -- the privilege of being able to go to any event you like, anywhere, with little difficulty or inconvenience except perhaps finding parking --

The empty room means that this state of affairs, a state of affairs in which our completely avoidable and unnecessary yet routine exclusion from programming on campus is simply ordinary.



--
Author's edit: Since 2012, I have been working in various ways to advance disability justice at Georgetown. I formed a committee of students advocating for the creation of a Disability Cultural Center. I am the first person ever to serve in GUSA (our student government) doing work on disability within the diversity section, and am currently serving a second consecutive term in that role. I have organized several events on different disability rights topics. I'm collaborating with faculty who are proposing creation of a Disability Studies minor. I am agitating all the time for better physical accessibility and accommodations policies for students with disabilities. I've interviewed dozens of people with connections to the university, past and present, on their experiences while disabled. Back in January 2014, I organized a conversation under hashtag #BDGU (Being Disabled at Georgetown University) in the footsteps of other such conversations on experiences of different racialized groups on elite college campuses.

I'm currently organizing a Lecture & Performance Series on Disability Justice. The first event was September 23, when Kassiane Sibley came to campus to discuss abuse of disabled people by caregivers/family members. The next event is October 21 and 22, with Leroy Moore from Krip Hop Nation and Sins Invalid, performing and speaking on police brutality against disabled people, especially disabled people of color.

So there has been progress, just very incremental and largely invisible to the larger community.

04 September 2014

Letter to a Stranger

Hello. You may or may not ever read this letter, but as much as I'm (perhaps irrationally) afraid that you'll stumble across it, part of me hopes that you do indeed find it and read it and think for a long, long time about it.

The way we met was so common, so everyday, so ordinary that it would be easy to forget. I was sitting on the stairs with my friend eating ice cream and you were about to go up those stairs. So we moved to give you a path, and I made a brief quip about not knowing where a certain state is on the map. It's a normal social thing to say, comments like, "Just trying to get a snack before my fifteen is over," or "Really excited about the Patriots game tonight," or "Wow, I almost forgot to get my phone before leaving." And most folks will reply quickly, say something like, "Good luck!" or "Yeah, I hope they win," or "Hey, you could always carry it in your briefcase," and then they'd move on and you'd move on and the entire interaction would be over in around thirty seconds.

You decided right then and there that because I didn't know where this state was, I must obviously be from outside the country. You asked me where I was born and if I was born in the U.S. When I told you I wasn't, you were almost satisfied with that answer -- assuming that I'm foreign and so it's acceptable for me not to know where this state is on the map -- but then you asked when I came here, and I told you I was one. At that point your condescension started erasing what small amount of social nicety you might have had at the start. You started talking to me like I must know nothing at all, like I'm oblivious to everything and ignorant about everything, just because I've lived in the U.S. most of my life and somehow don't know where this one damn state is on the map.

But that's not even the half of it. That was warm-up for what you did next.

Somehow or other, the topic of what I do came up, and I mentioned that I work in disability rights and public policy advocacy. (Fancy schmancy way of saying, I go to people in power and try to get them to change the way things are so they'll be better for us disabled folks.) You asked me why I was so involved in disability, and I told you, like I tell anyone who asks this (very tired) question, I'm disabled and so are most of my friends and colleagues.

For the next twenty minutes or so (hell, it might have even been closer to thirty), you decided to interrogate me about my experiences, while invalidating them, delegitimizing them, erasing them, individualizing them (and I don't mean that in the positive way), and outright mocking them. Yes, I watched you rolling your eyes at me when I decided to suck it up and answer your questions. And you want to know why I stayed there and kept letting the conversation (if you can call it that) continue? Because I believe in cultivating allies, in raising awareness, in developing public conscious of ableism and disability justice and neurodiversity. Because I'd like to think that most strangers, if ignorant at first, are willing to learn and that if they ask questions it's because they're coming from a place of wanting to understand.

Instead, you went full-blown self-narrating zoo exhibit and kept pushing me to explain what it means that I'm autistic, how my autism manifests, all the way down to insisting that I explain my thought processes. In case you're wondering (though I very sincerely doubt it), my thought processes are pretty private stuff.

You were arrogant as you rolled your eyes at me, conveying quite clearly that you believed hardly anything I was saying and in fact probably assumed that I'm incapable of either understanding what it "really" means to be autistic or that I'm not competent enough to accurate interpret my own experiences. You were entitled as you pressed me for personal details about myself, my life, my history, and my neurological fucking processes. You didn't read my signals to stop the line of questioning, to return to discussing my work or my ideas but instead decided that my innermost thoughts were suddenly yours to examine and inspect to your own invasive curiosity while simultaneously dismissing everything that I said as fabrication, delusional, inaccurate, or otherwise symptomatic of a defective mind.

It was so obvious that you refused to so much as entertain the possibility that something I said might be valid or relevant or right -- whether about existing and new paradigms of disability, or about my own personal experiences -- that I'm surprised, honestly, surprised, that I didn't lose my temper at you. I could have. Easily. Your body language communicated hostility and incredulity; your voice communicated condescension and arrogance; your questions communicated nothing but entitlement and the presumption that you, as a well-educated person, automatically know and understand far more about my own experiences that I do.

Somehow, I was not surprised when you started talking about the Deaf community as a legitimate cultural group because they are a linguistic minority but in the same breath assumed that speech is the most legitimate or highest form of language/communication. Somehow, I was not surprised when you in as many words began to talk down to me about "people who are profoundly autistic" as though I can't possibly be truly autistic and as though those who are labeled "profoundly autistic" don't have agency, don't have voices, don't participate in activism. Somehow, I was not surprised when you eventually turned to interrogate my friend who was with me, to ask if they were also autistic, as though autistics only ever socialize with other autistics (or are only capable of being around other autistics). Somehow, I was not surprised when you insisted on visually observing this friend toe-walk and then made them do it again, like, what, a well-trained dog? Somehow, I was not surprised when you asked me am I good at math -- because all Asians are good at math and all autistics are math savants, so I must be a total genius at math, right?

And you know, it's people like you who say that autistics can't understand nonverbal cues, that autistics can't control their impulses or feelings, that autistics can't communicate with other people, that autistics can't respect other people's boundaries. How ironic is that.

The next time you meet a stranger who makes an offhand comment to you, please respond with another offhand comment and then walk away. (Hint: It's a social skill.)

And I hope that if you ever speak to another autistic person again, you remember that actually, individual people are the experts on their own experiences. Do we know everything about everything? No, we don't. But you need to stop assuming that you somehow know us better than we do ourselves, because where I come from, that's called arrogance, condescension, and general assholery.

I sincerely hope you have a good evening.

17 August 2014

Submission Guidelines for Anthology on Autism & Race


SUBMISSION GUIDELINES for ANTHOLOGY ON AUTISM & RACE


WHAT IS THIS PROJECT?

A collection of things written by autistic people of color talking about their lives, experiences, ideas, work, or other stories. The project will become a book available in different formats. Lydia Brown is the lead editor for the anthology, which will be published through the Autism Women’s Network.

WHO CAN BE PART OF THE PROJECT?

Anyone who self-identifies as 

1. Autistic 
(with or without a formal diagnosis, includes PDD-NOS and Asperger's)

2. Person of color, racialized, or non-white

Specifically, you might consider yourself one or more of the following:
  • Transethnic, transracial, or transnational adoptee
  • Mixed race, biracial, or multi-racial
  • Migrant
  • Indigenous, Native, Aboriginal, or First Peoples
  • Black, Caribbean, or African 
  • East Asian, Southeast Asian, or Pacific Islander
  • South Asian, Desi, Central Asian, or Middle Eastern
  • Brown
  • Latin@, Hispanic, or Latin American
WHAT CAN I SUBMIT?

Anything that you write or have already written. Your submission can be short or long, prose or poetry, formal or informal, academic or personal. Some possible formats include personal essays, creative non-fiction, poetry, blog posts, speeches, and academic writing. You may also submit more than one thing. 

Some suggested topics (but you don't have to choose from this list):
  • Living at the intersection of disability and race
  • Cultural and community spaces for disabled people of color
  • Passing as white or neurotypical
  • Conceptualizing disability in non-white communities
  • Intersectional social justice for disabled people of color
  • Police brutality and profiling of disabled people of color, and state violence
  • Intimacy, kinship, chosen family, romance, and sexuality
  • Education
  • Employment
  • Housing
  • Disability services
  • Healthcare
  • Activism and advocacy
  • Further marginalized experiences (i.e., also being queer, migrant, trans*, poor, multiple-disabled, etc.)
  • Representation and visibility
  • Voice, silencing, erasure
  • Socialization, communication
  • Interdependence, healing, trauma
  • Violence and abuse
  • Resilience, power, reclamation, and solidarity

If you want more specific guidelines or concrete rules about submissions, contact Lydia Brown at lydia@autistichoya.com

* Note: If it was published somewhere else, you need to have the legal right to submit it here. 

CAN I USE A PSEUDONYM OR ALIAS?

If we choose your submission, we will use whatever name you want to appear. 

HOW DO I SUBMIT WRITING?

Email your writing to Lydia Brown at lydia@autistichoya.com. Submissions can be attachments or in the email. 

WHEN ARE SUBMISSIONS DUE?

15 November 2014.

WHEN WILL I FIND OUT ABOUT MY SUBMISSION?

You will find out by December 1. If we choose one or more of your submissions, we will begin communicating with you about the editing process at that time.

HOW ELSE CAN I HELP?

We need to raise $10,000 to cover publishing and printing costs for the anthology. If you or someone you know can donate any amount of money, everything helps. Check out our fundraising video and donate online!


WHO ARE YOU?

My name is Lydia Brown (though you might know me better as Autistic Hoya). I'm an activist and writer focusing on violence against multiply-marginalized disabled people, including hate crimes, policy brutality, and prisoner abuse. At present, I am serving on the board of the Autism Women's Network. I am also president and co-founder of the Washington Metro Disabled Students Collective. I have worked with the Autistic Self Advocacy Network's national office, and am a past Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. In 2013, I was honored by the White House as a Champion of Change for disability rights. 

The mission of the Autism Women’s Network (AWN) is to provide effective supports to Autistic women and girls of all ages through a sense of community, advocacy and resources. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women.  AWN welcomes all women, supporters of women, those who have at one time identified as women and non binary gender variant individuals.  AWN recognizes and affirms the gender identity of each individual.  AWN also welcomes the support and community of those who do not and have not identified as women as allies to support us in our work.

I HAVE OTHER QUESTIONS!

You can contact Lydia Brown, the editor, by email at lydia@autistichoya.com or by phone or text message at (202) 618-0187

26 May 2014

Do Blind People Dream in Color? Transabled/Transblind Commentary

The following article is a commentary on a recent article in the Braille Monitor, "Do Blind People Dream in Color?" The commentary (in bold for sighted folks) is written by Tasha Raella, who has given permission for the below commentary to be printed.

Today, a genderqueer, cisblind friend of mine (let’s call them Kelly) posted the below article from The Braille Monitor to their timeline. I read it, and realized that as a transabled person, I was instantly triggered by it, though I could also see how the article validated Kelly’s perspective. We had a lengthy conversation, in which we openly and honestly shared our views. Our conversation inspired me to write the following commentary. My thoughts are in brackets. Before we proceed, it’s important that I briefly explain some vocabulary.

Transabled or transblind (alternatively, abilityqueer): A term that typically refers to people without disabilities who feel that they need them (e.g. a sighted person who feels like she needs to be blind), but which I also use to refer to myself (a congenitally blind person with limited light perception who identifies as sighted). Transability is not the same as internalized ableism, because my identification with sightedness stems from factors that are unrelated to ableism. I have persistently felt sighted from a very early age, before I was exposed to the detrimental effects of ableism.  My transability is as integral to my identity as   Kelly's non-binary gender identity in a binarist world. when it comes to transness,  identity runs deeper than social conditioning.

 Cisdisabled or cisblind: A blind person who identifies as a blind person. Analogous to cisgender.

Now, on with the commentary.

Article quote:

Do Blind People Dream in Color?
by Erin Jepsen

From the Editor: Sometimes I find myself complaining about the blurring I perceive between opinion and news, about the tendency to elevate the reporter above the events he reports, and about how easily we accept one side of a story without demanding the other side and then some considered discussion of the conflicting points of view. When we carry an investigative piece, the Monitor tries to talk with those who are complaining and those who are the target of the complaints. We certainly do weigh in with our synthesis of what we have been told and have observed, but we also hope to give readers enough information to draw their own conclusions about what has been reported.

What follows is not an investigative piece. It is clearly a strongly held opinion, one that may cause those of us who consider ourselves progressive in the way we think about blindness to question whether we appreciate all that our senses can tell us or whether we simply appreciate having them, poor substitutes though they may be, for the sense of sight.

Raella commentary:

[Here’s the first sign that I identify with the sighted perspective. After reading this paragraph, I felt instantly ashamed for my seeming inability to “appreciate what my senses have to tell me.” I know on some level, I can push myself to get more out of my other senses (to concentrate on what I do perceive, rather than what I don’t), but this takes a great deal of effort and is not automatic, the way it seems to be for some other blind people. This lack of automaticity affects almost every domain of my life. When teaching, for example, it rarely occurs to me to use auditory cues, such as having students say “yes” instead of raising their hands to indicate that they have completed a task. I can learn to use these techniques, but I often need to be reminded of their existence, as if I were someone who had recently lost her sight, rather than someone who has never had it].

Article quote: 

Here is a perspective from the mother of a blind child, a mother who has some sight but considers herself blind and thinks there is much to appreciate in being so:

Raella commentary: 

[Again, the disconcerting       shame because of my lack of appreciation for blindness.]

Article quote: 

Have you ever been asked, “Do blind people dream in color?” I’d like to answer that question, but not in the way you might think. I’d like to say that blind people need to dream more in color, not literally, but metaphorically. Let me explain if I may.

Raella commentary:

[Why must we limit our understanding of color to metaphor? I strongly believe that because colors are basically just vibrations, blind people, if they so wish, can understand them literally, as well as metaphorically.]

Article quote:

A chronic condition exists in our world that desperately needs changing. We have chipped away at it, but still it lurks in our culture, in books, in movies, in conversations, and in unnecessarily limited expectations. We’ll call it “sightism” for lack of a better term, and, quickly defined, it’s the belief that being sighted is fundamentally better than being blind.

Raella commentary:

[Do I feel that being sighted is better than being blind? It’s a complicated question. I guess my best answer is in general, I don’t think one state of being is “better” than the other, but because I experience intense dysphoria as a blind person, being sighted would be “better” for me. Which leaves me wondering: am I a blind person who is sightist? Am I contributing to oppression? My friend Kelly is quick to reassure me that I am not an oppressor, because I’m not reaping the benefits of sighted privilege, but am I? After all, my way of thinking about the importance of visual culture is in alignment with the dominant paradigm. I feel privileged and marginalized at the same time]

Article quote:

Historically, the “medical model of blindness,” as it’s called in academia, is partly to blame. The thinking goes like this: Diseases, illness, or accidents cause blindness, so it is obviously to be combated and cured by the medical community and by research. Eye doctors spend years of study and millions of dollars to learn how to restore sight. Blindness is not an ideal part of the human condition, so its reversal is better than its acceptance. Historical literature paints the blind man as a second-class citizen, unable to support a family, unable to function independently, and devoid of power in any sort of social sense. The Bible also has several examples of Christ restoring sight, which carries with it the assumption that the lives of those so touched will be vastly improved.

Raella commentary:

[I definitely don’t agree with the medical model of blindness, and am conflicted over the vast amount of money researchers are spending on finding cures for various eye conditions. On the one hand, I am selfishly grateful. I want a cure (though I prefer to call it a transition to sightedness). On the other hand, I realize that the majority of congenitally blind people (and a lot of adventitiously blind people as well) do not want such a cure. I think this kind of research is acceptable, as long as researchers are very careful not to assume that every blind person wants to benefit from it.]

Article quote: 

In modern culture we, the politically correct enlightened few, assume we’ve evolved beyond this demeaning form of oppression. Here’s how our modern thinking tends to run: Of course a blind man can work! He’ll simply use his iPhone as a sort of replacement sight and go on with his business. Technology today has advanced so far that we’ll soon have self-driving cars and artificial retinas. Stem cells will likely re-grow entire eyes if put into the right petri dish.

Yes, I’m being facetious, but I wonder if you can spot my point? Replacement eyes. New eyeballs that work. Sight, sight, sight. Valuable—you bet. The end all and be all of human existence—I don’t buy it.

Raella commentary:

[Another sign that I’m reading this article as a sighted person: instead of getting annoyed by this proliferation of sight-replacing or sight-restoring technologies, I get excited by it. Clearly, the author feels that this emphasis on sight-restoring technologies will further support society’s marginalization of blindness and its obsession with the visual. But does this have to be the case? Can’t blind people fight for their rights, and demonstrate that their perspective is valuable, while at the same time, technologies are created for the blind people who wish to transition into sightedness, or to live as sighted part of the time? ? Maybe I’m naïve and idealistic, but I don’t think it is an either/or. When created and used responsibly, technology is all about giving people options.]

Article quote: 

I’ve been told that humans use up to 70 percent of their brains to interpret visual images. (Some literature alleges that 90 percent of learning comes through vision.) I was told this during a vision screening in which my own visual condition was cross-examined. My brain apparently processes visual images incorrectly. It brought into focus for me (sorry about the pun) the trouble the sighted world has with the idea that someone could function normally without that 70 percent of visual input and still have a rich sensory environment. I get it. Simple mathematics dictates that a blind person uses only the 30 percent that remains, right? Well, we all know that isn’t true. The brain is more flexible than that, and, while I don’t buy into the delightful myth of superhuman hearing, a la Daredevil, I do know that the brain appropriates visual processing centers in order to interpret shapes read by the fingers as well as aural input. Echolocation is one example.

Raella commentary:

[Though I of course don’t believe that blind people only use 30% of their brains, I can say that as a transabled person, I am keenly aware of the gaps in my sensory perceptions. I of course have no evidence to back this up, but I suspect that the neural restructuring that happens in most blind people’s brains didn’t happen to the same extent for me. I am more interested in color theory than I am in sculpture or music or anything else that is tactile or auditory. I am definitely good at some tasks that sighted people aren’t (listening to synthesized speech at high speeds, for example.) But it seems like the author is making an assumption that all blind people have a rich and complete sensory experience, and I don’t know if that is the case. I wonder if other blind people can relate to my awareness of having a gap in perception.]

Article quote: 

Still, people have a hard time believing that this is adequate. Even the blind community has a pervasive attitude of sightism running through it. Stick with me here. We’ve been told our whole lives that, while blindness is okay, sight is better, right? The sighted parents receive news that their child will be blind for life, and how do they react? They weep. The child hears them weeping and begins to form an image of her own unfortunate circumstances. This carries through to the undereducated (through no fault of her own) blind adult who cannot hold a job because she has never been expected to ride public transit by herself, the man who never learns to get along with his co-workers without demanding special treatment, and the woman who is incapable of working current technology because her school provided her with technology from 1965. In writing this I’m not shaming us, but I’m pointing out some simple facts. We all know these blind people. We are them.

Raella commentary:

[In my case, I had access to the right technology, and the right education. I had several strong blind adult role models. My mother quickly got over her grief and focused on helping me to become the most successful blind person possible. My father researched sight restoration for me, but I think only because I had expressed an interest in it myself. Clearly, education and familial attitudes are not the only factors that influence whether we identify or disidentify with blindness. I think there is a pronounced difference between the examples Jepsen describes, of blind people who were taught to believe that they couldn’t lead successful lives, and transblind people, who, for whatever reason, are wired for sight.]

Article quote: 

I have low vision. I’ve been denied jobs because the potential employer had known an incompetent blind person and assumed I was also incompetent. There is room for change.

Raella commentary:

[Yes, I agree.]

Article quote: 

Family, acquaintances, and strangers weekly tell me things I should believe about myself and my daughter, who is blind. When she confidently runs around at church during music practice, I invariably have someone tell me that she can surely see better than we think she can. (Uhm, prosthetic eye, anyone?) The underlying assumption that confident movement can be achieved only with sight is unquestioned. When I refute it, amazement and the dreaded word “inspiration” often follows. When she had surgery on her eyes, people asked me if she could then see better. They ask me if they might pray that her sight would be improved. I won’t go into my observations about our faith in the medical system as contrasted with our faith in the Divine. While I do believe in Divine healing, I believe more in Divine guidance, and sometimes we really do walk by faith and not sight. Did you hear me? Not sight. As in, that’s okay.

Raella commentary:

[I read this, and part of me is envious of Jepsen’s daughter’s confidence. I have blind friends that are amazing travelers, and to be honest, I think I’m in as much awe of them as sighted people are, though I definitely would never ever use the I word to describe them. Ick. Also, this paragraph is another example of Jepsen’s chastising and somewhat condescending tone. Kelly said that they doesn’t think Jepsen is saying that blindness is better than sight; she’s merely pointing out sighted culture’s extreme tendency to undervalue blind people’s ways of doing things. If Jepsen is taking an extreme position, Kelly says, it’s only because sighted people take an equally extreme position with regards to blindness. But as a deconstructionist, I’m always on the lookout for dichotomies, and I think Jepsen is unintentionally creating one here. In his article Queer as a Verb , Charlie Glickman invites us to view dichotomies as tensions between sameness and difference, rather than opposing forces. I think that’s what Jepsen is trying to do here, but it isn’t really working for me, because I keep scenting blind superiority.]

Article quote: 

The civil rights movement in our country focused our attention on race. It showed us that people with black skin could be employed if they were allowed to be educated. It showed us that black people were not content to sit at the back of the bus or to be treated as second-class citizens. It showed us that the rusty old “colored” drinking fountain next to the refrigerated “white” drinking fountain would no longer do and that shoehorning black adults into menial labor jobs was no longer acceptable. As a country we discovered that people of color were equal in every way to white people. It took time for this idea to sink in. It took a lot of work. But, for a lot of us, it has finally penetrated our skulls, and, equally important, it has made its way into our hearts—both are required for real awareness and understanding that people are equal, no matter their race.

Now let’s talk about disability. I’m tired of sitting at the back of the bus too. I’m tired of people weeping over blindness. I’m tired of literature equating blindness with death, with sin, with darkness and fear, and with ineptitude. I’m tired of being seen as superhuman or subhuman, and, never oh never, just human. I’m tired of viral videos showing a six-year-old boy stepping off a curb for the very first time with his white cane as if that is a good thing. It’s not a good thing. Eighteen-month-old babies step off curbs for the first time, not six-year-old children. I’m tired of reading about 70 percent unemployment rates for blind adults. I’m tired of Braille charities that “bring light to those in darkness.” Well, excuse me, I’m not in darkness. My visual condition happens to have a little too much light as a matter of fact. I’m tired of raising money to fight against my blindness. I don’t raise money to fight against my brown hair, my five-foot-ten height, or my Caucasian skin. If I raised money to fight my daughter’s African skin, I’d be accused of racism, and my accusers would be right. I don’t need to fight against who I am, and, more than that, fighting against the way I perceive the world robs the world of my own perception and of my own voice and message.

Raella commentary:

[I agree. However, whenever I am mistreated because of my blindness, my tendency is to take it personally, rather than to view the sighted person as ableist. It’s not that I think ableism doesn’t exist. It’s more that my identification with sightedness is so tangible, my expectation that I should be read as sighted so pronounced, that I blame myself. Of course, this way of viewing the situation seems illogical and potentially damaging, which drives home to me that my transability is not something over which I have complete control. When I expressed frustration to Kelly that I was not able to identify with Jepsen’s description of ableism, they said reassuringly, “Of course you wouldn’t. You’re sighted.”

In addition, I think the discourse around “curing” blindness needs to change. Phrases like “fighting blindness” and “suffering from blindness,” though they generate pathos and loosen purse strings, should be excised, because they imply that blindness is inferior to sight. We need to find other ways of talking about blindness research that are not oppressive, while still recognizing that some people may want to transition out of blindness. Another friend with a disability, Valéria M. Souza, ., helped me come to the conclusion that the tools to “cure” blindness are not in it of themselves dangerous; it is the way that the medical establishment wields them that is oppressive.]

Article quote: 

The medical model of blindness is fine as far as it goes. The social model steps a bit further and insists that blindness, when incurable, can become a normal condition of existence and should be accepted as such. Well, that’s all nice, but do I merely accept my daughter’s African skin? By no means! I embrace her beauty. I tell my bi-racial son that his brown skin is gorgeous, which it is. I tell them that their beautiful hair is so much fun. I tell my white children the same. I adore my multi-colored family, and my adoration opens the door for those around me to adore them too.

I draw attention to race only to illustrate a parallel between accepting differences in race and accepting differences in sensory ability. Just as rejecting racism ultimately relies on appreciating one another’s differences, rejecting sightism goes far, far beyond simple acceptance. Merely existing in spite of our blindness isn’t good enough. Secretly wishing we could see won’t cut it. There is a point beyond simply living with our blindness--actually enjoying it. There is a point where we realize that we have a unique perception of the world that sighted people don’t have. This perception adds richness to the tapestry of human existence.

Raella commentary:

[Again, Jepsen seems to be conflating her views with that of all blind people. Not everyone is capable (or desires to) embrace their blindness. By not acknowledging this fact, Jepsen is engaging in (or at least supporting) identity-policing. She is implying that if a blind person refuses to embrace blindness, he or she is contributing to sightism. Philosopher Jose Medina writes that proponents of second-wave feminism defined themselves in opposition to men and valorized “women’s ways” of doing things. I wonder if that is what is going on here; is the disability rights movement undergoing an analogous stage?] I see much potential in writers such as Robert McRure and Eli Claire, whose work is at the intersection of disability and queer studies, though to my knowledge, no one has yet postulated that abilityqueerness is separate from ableism and is a valid identity category.]

Article quote: 

My daughter who is blind has a rich perception that is unique to her and is in no way less than that of her sister who is fully sighted. If I go around telling my blind daughter everything I see and describing the world to her so that her poor pitiful dark world will be just a bit fuller, then I am sending her the subtle message that the things she notices are less meaningful than the things I can (sort of) see. People who tell me I am blessed because of the limited sight I have discount the wonderful things I possess as part of my blind self. I want to tell them that the unique way that I have always perceived the world is important, even if it is different from the way they perceive it!

Raella commentary:

[But the question is: does Jepsens’s daughter want to hear about the visual world? If she does, then her mother’s description of what she sees will contribute to the richness of her perception, rather than diminish it. Again, I think it is possible to do both: give the blind child an opportunity to engage with visuality, while encouraging and supporting her nonvisual perceptions. As the child grows older, she will be able to make her own decision regarding her relationship with the visual, but that decision can only be made if she has access to information from visual and nonvisual channels.]

Article quote: 

Remember the scene in Dead Poets Society where the teacher stands on his desk to the consternation of his strait-laced, rule-following prep-school pupils? He is trying to get them to see the world in a new way, a different way. He is trying to broaden them. At the end of the movie, the tearjerker scene involves a student standing on his desk, as if to say, “I learned what you were trying to teach. I get it. I’ve changed.”

Guess what? We blind folks were born standing on our desks--or that illness or accident forced us up there. We see the world in a different way. That’s not a bad thing; it’s a wonderful thing. It’s a broadening thing. The world needs us: not to give them inspiration, not by stepping off curbs, but by being ourselves. By experiencing the world in the way that we experience it, by looking at things from a different angle, we enrich the world.

Raella commentary:

[I’m standing on a desk, too! Except instead of teaching sighted people about how I perceive the world differently, I’m declaring my unbounded curiosity about sight. I’m focusing on my similarities to sighted people, rather than my differences, and I think that is just as important and just as subversive as what Jepsen is doing. I’m queering the boundary between blindness and sightedness, not out of a desire to conform, but out of a desire to live my own truth. The poet Hune Margulies writes, “is the bridge/there to embrace together two shores,/or are the shores/
there/to embrace both ends of the bridge?]

Article quote: 

I read an article which said that architecture designed with a blind user in mind ends up being more functional for the general population. In the same way that embracing the beauty of all colors of the races and all of the variety found in the world’s many cultural traditions makes us stronger, so too does embracing our diverse abilities. These must be seen as valid ways of perceiving or navigating the world so that they can bring a richness of experience, a diversity of thought and problem-solving that cannot happen when vision is considered to be the most important of our five senses. We close doors leading to significant human experience when only mobility using two feet is considered, when only hearing is considered, when only neuro-typical ideas are deemed valid.

Raella commentary:

[I consider my transability to be a form of neuroqueerness.]

Article quote: 

This shift in thinking about blindness has to come from the blind community first. For the sighted world to see us as competent, we need to begin seeing ourselves as possessing a truly valid perceptual experience. We need to question the sightism that goes on around us constantly. We need to sit in at the sightist lunch counters and insist that we belong there. We need to appreciate the blind artists who showcase the beauty of our perception to the unaware sighted world. We need to insist that blind actors play blind roles in Hollywood and discontinue the shameful but Oscar-winning blind-face practice that goes on there. We need to keep on working for equal access to education and transportation. We need to push back gently against teachers of the blind who teach reliance on poor sight over learning essential blindness skills.

Raella commentary:

[Note Jepsen’s use of “wee.” Though I agree with many of the causes Jepsen says we must fight for, my dichotomy alarm is still going off. Jepsen is using words like “blind community” and “sighted world,” which, to me, perpetuates an us-versus-them mentality. Kelly says that blind people are not to blame for this dichotomizing, that sighted people are responsible for creating it. Regardless of who is responsible, I worry that if we continue to use this kind of language, we are feeding the dichotomy rather than disrupting it.]

Article quote: 

I’m not discounting the frightening experience of sight loss. Any change like that is bound to be unsettling; I’ve gone through it myself. I’ve gone through the identity shift that rocked the very core of my existence when the person I thought I was is the person I no longer am. I’ve been there. I have. It’s okay. Stepping up onto that desk is scary at first. After a while, though, you find your balance and look around, acknowledging that what you observe is still reality, but reality from a different point of view.

Raella commentary:

[But sometimes, this doesn’t happen for me. Sometimes, I stand up on that desk, and I’m twisted between the me that is blind and the me that drives all her friends around and practices her calligraphy. Though only the former exists on a physical plane, the potentiality of the other me is just as real.]

Article quote: 

Because of the Civil Rights movement, I can adopt and raise black kids to have a wonderful future and embrace them for the color and race they are. I hope that in twenty years my partially sighted and blind children can have as bright a future and be embraced in their families and workplaces for the valuable contributions they make and not merely accepted or accommodated. Like the inimitable Dr. King, I have a dream: just as racism is dying, that sightism and ableism will die the same death, that the medical model will no longer be used as an excuse to discriminate and push us to assume second-class citizenship. I dream that our blind kids will join the ranks of tomorrow’s chemists and doctors and actors and engineers, as well as bricklayers and fast-food workers. I dream that we will never again hear stories of blind parents having children removed by Children’s Protective Services because they are both blind. I dream that inclusive architecture will be standard because the people who directly benefit from that architecture are valuable enough to be worth it. I dream that our children won’t have to spend their energy fighting for equal access to science laboratories but instead can spend their time and energy researching. I have a dream that all Braille teachers not only will read Braille well, but will tell children that learning Braille is as easy as sighted kids learning to read those squiggles and lines they call print. I dream that blind athletes will continue to strive for world records. Not only do I dream for the newsmakers, but I want to see a world in which blind people who want to live quiet, peaceful, non-record-breaking lives without being interrupted by a constant stream of acquaintances calling them inspirational will be free to do so. Let’s dream together, shall we? And then we’ll tell the world of our beautiful, colorful dreams.

Raella commentary:

[Maybe my dreams aren’t so different from Jepsen’s, but here’s what I would add: I dream that blind children will be fully included in art classes, instead of handed a piece of clay and told to work by themselves. I dream that all of us, blind and sighted, will learn that the visual can be accessed through more than just the eyeballs. I dream that while attending Harvard this fall, I will create a system for distinguishing  colors using the fingertips, through a phenomenon called dermo-optical perception. I dream that DOP will become mainstream, and that sighted and blind artists will collaborate and break boundaries. And, above all, I dream that the diverse experiences of all blind people will be celebrated: cisblindness, transblindness, and everything in between.] 


02 May 2014

New Publication: Criptiques Anthology

This past month, the new Criptiques anthology on disability has been published! I'm extremely excited to be featured alongside an array of incredible disabled writers and activists, all compiled by the kickass Caitlin Wood of Where's Lulu?



Here is the anthology's description:
Criptiques is a groundbreaking collection of essays by disabled authors examining the often overlooked, provocative sides of disability. Exploring themes of gender, sexuality, disability/crip culture, identity, ableism and much more, this important anthology provides much needed space for thought-provoking discourse from a highly diverse group of writers. Criptiques takes a cue from the disability rights slogan "Nothing About Us Without Us," illuminating disability experiences from those with firsthand knowledge. Criptiques is for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.

Not convinced? Here is the full table of contents!

  • "Introduction: Criptiques: A Daring Space" by Caitlin Wood
  • "Criplesque" by Elsa S. Henry
  • "Your Mama Wears Drover Boots" by Elizabeth J. "Ibby" Grace
  • "Droolilicious" by Leroy Moore
  • "Waiting" by Anna Hamilton
  • "Disability in an Ableist World" by Lydia Brown
  • "What Should You Call Me? I Get to Decide: Why I'll Never Identify with Person-First Language" by Emily Ladau
  • "Dreams I'll Never Remember" by William Alton
  • "Palsy Skinny: A Mixed-Up, Muddled Journey into Size and Disability" by Cara Liebowitz
  • "Brain Injury, Meet Disability Culture" by Cheryl Green
  • "Going Off the Communication Beaten Path" by Eva Sweeney
  • "The Visual and Political Implications of Using Frida Kahlo and her Artwork to Represent Disability" by Stefanie Snider
  • "Reflection Toward Practice: Some Questions on Disability Justice" by Mia Mingus
  • "The Wholeness Project" by Nitika Raj
  • "The Erasure of Queer Autistic People" by Alyssa Hillary
  • "Take With Food" by Cat Moran
  • "Beauty in Exile" by Riva Lehrer
  • "On Surviving “Little ‘t’ Trauma”" by Nina G. Comedian
  • "Preferred Provider" by Robin M. Tovey
  • "Disability Should Not Equal Poverty" by Danine Spencer
  • "Constant Dissonance: Our Noise is Dangerous" by Kay Ulanday Barrett
  • "What Bodies Do: Meditations on Crip Hatred, Elder Hatred, and the Vulnerable Body" by Rachel Cohen-Rottenberg
  • "On Radical Empathy and Schizophrenia" by Ben G. 
  • "The Reinvention of Self in the Context of Heteronormativity and Ableism" by Jen Rinaldi and Samantha Walsh
  • "Krip Power Through It: Disability Scholarship & Activism Helped Me Resign & Rebuild" by Bethany Stevens


Criptiques is available from Amazon and soon will be available in e-book format, too. Criptiques also has a Facebook page and a homepage at www.criptiques.com with further information.

Image description: Three pictures. Left hand corner is a stack of brown boxes with a blue Criptiques book lying on top. Underneath is a picture of the blue Criptiques book on top of a blue Criptiques shirt and black and white sticker and button. To the right is a large closeup photo of the Criptiques cover. Photo and description from Caitlin Wood.