MAISE & METFORD: The Programme (A Novella, Part 2)

The Programme

On the second day of my absence from school, a programme called “Defeat Tuberculosis” came on telly.

I normally didn’t pay attention to the BBC’s public information films. They were dull, had no children in them, and tended to air on weekday evenings while I was helping Mum scrub the supper dishes. But that night, Mum sent me to the front room early with my cup of tea and a packet of Garibaldi biscuits. “Best be safe ’til we know for sure,” she said, calling Tim to wash dishes instead. I was kneeling by myself on the front-room carpet—Tim and I weren’t allowed food or drink near the furniture—when the programme’s intertitle appeared on-screen. I recognised defeat but had trouble with tuberculosis. The word seemed familiar, but barely so. I’d learned plenty of new words for the 11-plus exam recently; this one was nothing special. It hadn’t yet taken on the low, frightful tenor that rang deep in the pit of my stomach, as near to me as the sound of my own breath.

The programme was about two sisters, Betty and Joan, who went to be tested for the disease. Betty’s x-ray was normal, but Joan’s x-ray looked just like mine: black cavities for lungs, barred behind white ribs, and inside one of them, a single fist-sized splotch that reminded me of a cumulus cloud.

That cloud was a “shadow,” the technician had told me. That cloud was TB.

IN MY LANGUAGE: A YouTuber's Inside Look at Autism

Amanda Baggs: blogger, YouTube celebrity, and
disability rights/autistic liberation advocate.

Some people assume that a personal history with one type of disability entails an intimate knowledge of all disabilities.

Nope.

Though some of the social obstacles each community faces may be similar, our means of experiencing the world around us is fundamentally different. I navigate my environment under the unique circumstances of impaired mobility. I've never attempted this without sight, or without hearing, and I've definitely never done the same while filtering my perceptions through the lens of autism, ADHD, or bipolar disorder. These experiences are as alien to me as they would be to someone without any disability whatsoever.

Which is why I'm thankful for people like Amanda Baggs, who communicate these experiences so that they're accessible to everyone.

She calls it a translation.

Baggs' viral YouTube video, "In My Language," illustrates her personal experience with autism. (Note: it doesn't claim to stand for the universal experience of autism, which doesn't exist, although she's posted another video describing the varieties of autism she's encountered.) The video shows Baggs interacting with various household objects: touching them, making noise with them, rubbing them together, and in general—as she says—holding a conversation with her surroundings. The second half of the video is what she calls a translation of the first. It's not a translation in the typical sense, which matches input with output in a one-to-one ratio. Instead, in her translation, she switches gears and begins speaking in a new language entirely: in part one, she communicates with her environment; in part two, she communicates with us.

A transcript of Baggs' translation—with some added guesses at formatting—can be found at the bottom of this post, but I highly recommend watching her video first.

Just like Connolly, I have a hard time calling Baggs disabled. Both Connolly and Baggs are, in some ways, enriched by what others might call their disabilities. They're perfectly in sync with their bodies' distinct modes of functioning, which are accepted without question, thoroughly understood in their specific abilities, requirements, and limitations, and—most importantly—not wistfully held up to an unattainable standard of "normalcy."

For Connolly and Baggs, this is normalcy.

"Being disabled from birth, there's nothing to adjust to," says Baggs. "It's usually other people who get this idea that you must need to adjust to being disabled. So then they start mentioning it, and it ends up seeming really weird to you, because it's like, 'This is the brain I was born with, or the body I was born with, why do I need to adjust to it?' "

Baggs' video has over a million views. Her channel, where she posts other videos on disability rights and autistic liberation, has three thousand subscribers. Her comments sections—especially the one for "In My Language"—have become massive forums on autism awareness, whose contributors bolstered the most popular comments with hundreds of "up" votes so that they sit atop the forum as representative statements of an entire community. The most voted-up comment for "In My Language," with 182 votes, is from a teacher:

Thank you so much for making this video. I work with youth that have a range of disabilities, some verbal but still their communication style is often overlooked. I am going to share this with my students and encourage them to make and post their own videos. Thank you so very much!

The second most voted-up comment, with 144 votes, is from a parent:

thank you for posting this video i have two atustic sons who are non verbal to the normal world i seem to understand them just fine .. this video was completely normal for me as with a few of the others you have posted i understand them completly but only because my son's have taught me your language.. but to learn it you have to care enough to listen

These are the two demographics that would benefit most from Baggs' disclosure of her "native language": those who are raising children with autism, and those who are teaching them. Both figures lay the developmental groundwork that shapes children well into their adult lives. Beyond instilling values of self-worth and self-acceptance, teachers in particular are responsible for crafting a child's attitude toward disability. This applies to non-disabled students as well as disabled students, especially in integrated classrooms.

The explosion of popularity experienced by Baggs' YouTube video happened much differently from Katawa Shoujo's and The Rolling Exhibition's. Katawa Shoujo had an enormous fan base to begin with—it never truly went viral, hurtling through the social media like an out-of-control vehicle. It just began baptizing new fanatics into its already-substantial following. The Rolling Exhibition's popularity trickled down from highbrow platforms of distribution (photography exhibitions and news media) to lowbrow platforms of distribution (online entertainment feedbags like i-am-bored.com), garnering the attention of the masses from the top down. But Baggs' video was a bona fide bottom-up social movement, boosted in popularity by the internet's grassroots so that it eventually soared into the ranks of CNN and Anderson Cooper 360.

In other words, "In My Language" truly went viral.

A photo from Baggs' most recent post, "I'm starting
to heal here."

Baggs has been riding the social media wave ever since, redirecting the spotlight she's been granted toward issues facing the autistic community as well as the disabled community as a whole. Her blog, Ballastexistenz, was chosen as a Yahoo! Pick of the Week in 2007, and though her YouTube channel has been collecting cobwebs lately, she continues to regularly update her blog—even while battling gastroparesis and a severe case of pneumonia.

Recently, she's assembled her web-followers into a massive coup on her hospital's administration, after they delayed standard treatment procedures for her gastroparesis. As soon as Baggs' disability became a factor in the hospital's healthcare decisions, Baggs and her friend, Laura T. (known as "Webmuskie" within the blogosphere), began voicing their discontent from the largest soapbox available to them: the internet. Laura and Baggs both continue to document their experiences at the hospital on Tumblr. Baggs' page attacks ableism in healthcare and administrative injustice:

I still remember the way the nurse laughed a little when I said my wishes were for all measures to be taken to save my life. This place is hell. What scares me are all the people without a good advocate to protect them. And they die. I know they die because I know people who quit working here because they couldn’t stand it anymore.

Laura's page is a call to action:

It may be time to add angry phone calls to the hospital to the prayers come Monday morning. (the switchboard # is 802-847-0000 FYI, though you won’t be able to find her in the directory for reasons of privacy. Not a problem because come Monday the hospital administration will surely know who we are).

This information has been widely distributed within the blogging community, and by internet authorities such as Stephen Drake from Not Dead Yet and Rachel Cohen-Rottenberg from Disability and Representation. At one point, he president of the Autistic Self Advocacy Network himself joined the throngs of callers jamming the hospital's phone lines, saying—in Drake's words—that the ASAN would be "tracking her case very closely."

As a result of this mass blog-driven ambush, Baggs' hospital care has largely improved. She's dedicated the remaining anti-ableist fervor she's generated toward improving healthcare conditions for others like herself, who may not receive the same celebrity treatment. "The hospitalization started awful," Baggs says in her latest blog post, "but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through."

And the internet is right there behind her.
Meg

*The following is a transcript for the translation in Baggs' YouTube video, "In My Language."

The previous part of this video was in my native language. 

Many people have assumed that when I talk about this being my language, that means that each part of the video must have a particular symbolic message within it designed for the human mind to interpret. But my language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment. Reacting physically to all parts of my surroundings.

In this part of the video, the water doesn't symbolize anything. I am just interacting with the water as the water interacts with me. 

Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as "being in a world of my own," whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings, people claim that I am "opening up to true interaction with the world." They judge my existence, awareness, and personhood on which of a tiny and limited part of the world I appear to be reacting to.

The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all, but it is a way of thinking in its own right. However, the thinking of people like me is only taken seriously if we learn your language, no matter how we previously thought or interacted. As you heard, I can sing along with what is around me. It is only when I type something in your language that you refer to me as having communication.

I smell things.

I listen to things.

I feel things.

I taste things.

It is not enough to look and listen and taste and smell and feel—I have to do those to the right things, such as look at books, and fail to do them to the wrong things, or else people doubt that I am a thinking being. And since their definition of thought defines their definition of personhood so ridiculously much, they doubt that I am a real person as well.

I would like to honestly know how many people, if you met me on the street, would believe I wrote this. 

I find it very interesting, by the way, that a failure to learn your language is seen as a deficit, but a failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling, rather than anyone admitting that it is themselves who are confused—not autistic people or other cognitively disabled people who are inherently confusing. We are even viewed as non-communicative if we don't speak the standard language, but other people are not considered non-communicative if they are so oblivious to our own languages as to believe they don't exist.

In the end, I want you to know that this has not been intended as a voyeuristic freak show where you get to look at the bizarre workings of the autistic mind. It is meant as a strong statement on the existence and value of many different kinds of thinking and interaction, in a world where how close you can appear to a specific one of them determines whether you are seen as a real person, or an adult, or an intelligent person. And in a world in which those determine whether you have any rights, there are people being tortured, people dying, because their kind of thought is so unusual as to not be considered thought at all. 

Only when the many shapes of personhood are recognized will justice and human rights be possible.

Disability? Let's call it something else.

There came a point, during my last review, where I felt kind of silly calling Kevin Connolly disabled.

I mean, look. He's doing a handstand, for Christ's sake.

I've been mulling over that word a lot lately. Disabled. I identify with it. A whole community identifies with it. For the time being, it's our designated politically-correct label (although people-first language mixes it up a bit, calling us "people with disabilities" instead of the briefer-but-blunter "disabled people"). And up until now, I've never had a problem with it. I used to think that its combination of roots—which means, very clearly, "not able"—fit me fine: I can't hold a pen, can't run a marathon, can't stand in one spot for too long without falling over. I'm, in a general sense, not able.

But Connolly? What do you call a man who luges, jousts, and cliff jumps, but can't reach the top shelf of a bookcase?

THE ROLLING EXHIBITION: Legless Skateboarder Stares Back

Sample image from Kevin Connolly's
online photo gallery, The Rolling
Exhibition.

We all know this look.

I'm not just talking about the disabled community, either. At some point or other, we've all been stared at. Curiosity is fundamental to the human experience, and everyone—wherever they fall along the spectrum of ability—has inevitably been on both sides of it. We engage with the new, the unfamiliar, and the foreign by devoting to it the sense we rely on most: sight. Whether you're introducing yourself to a class, stumbling on a stairwell, or even catching someone's eye at a bar, you hold an audience captive in the brief moment that you're centered directly in someone's vision.

Of course, anyone with a visible disability will be more familiar with this particular look than others. We receive a distinctive brand of stare. There's pure curiosity, sure, but there's also the furrowed brows of confusion or contemplation—what's wrong with her? why does he walk, speak, or look that way?—or the pinched expressions of pity. All stares end abruptly when the starer's social awareness, conditioned not to call such blatant attention to the anomalous, kicks in. Their gazes jerk in a different direction. Physical differences are swept aside. Social proceedings continue as usual.

But for that brief moment, their stares reveal what their averted glances later hide: that universal human curiosity. An inherent interest in what one perceives to be different or strange; a desire to investigate what one has never before encountered. All of this in the raw, unmediated by social conditioning, with the shock of the new, the unfamiliar, and the foreign cleaving momentarily through all considerations of what's "proper" and "appropriate."

In some ways, the starer becomes just as vulnerable in the act of staring—just as exposed—as the actual subject of the stare.

"For the same reason we want to know how a magic trick works, or how mystery novel ends, we want to know how someone different, strange, or disfigured came to be as they are," photographer Kevin Connolly writes in The Rolling Exhibition's artist statement.

Everyone does it. It's natural... But before any of us can ponder or speculate—we react. We stare. Whether it is a glance or a neck twisting ogle, we look at that which does not seem to fit in our day to day lives. It is that one instant of unabashed curiosity—more reflex than conscious action—that makes us who we are and has been one of my goals to capture over the past year.

Connolly is more familiar than most with this kind of stare. The picture below should explain why.

MAISE & METFORD: The Train (A Novella, Part 1)

This is part one of my novella-in-progress, Maise & Metford, which follows a young girl's coming of age in the British convalescent homes of the 1950s.

The Train

Before boarding the train at Victoria Station, I wasn’t told where I was going. My mum and dad opted for other topics of conversation during meals—which neighbour boy had gotten the cane at Tim’s junior school, the new advert that Dad’s business had put out, and for me, how quickly the 11-plus exam was approaching. No one seemed to remember that I’d been absent from school for over four weeks now, and that—depending on the length of my “early holiday,” as Dad called it—I’d likely not be around in two months to take the 11-plus exam. The grunge of bedrest still clung to me at the kitchen table like a bad odor, glazing my eyes and plastering cowlicks in my hair. Sitting beside Mum, Dad and Tim in their daily wear, I felt hot and muggy-headed in my cotton pyjamas, as if I were sleepwalking and conscious from a great distance away.

On the morning of my departure, Mum had knelt down in front of me and pulled out her handkerchief.

“Take care not to breathe too much smog, Lorna dear,” she said, covering my mouth with the handkerchief and tying it in a knot behind my head. Though her voice was bright, as polished as our front-room silver, she directed it more to the handkerchief than to me. “There’s no worse place for you right now than London.”

KATAWA SHOUJO: 4chan's Disabled-Girls Dating Game (And Why I Love It)

My initial reaction to Katawa Shoujo was the same as nearly everyone else's: that it would be an absolute train wreck.

Katawa Shoujo is a visual novel/dating simulator with an all-disabled cast, set in a fictional private school for disabled students. This premise alone is enough to earn a few cocked eyebrows. Each of its five main love interests has a different disability—presumably, I assumed, to satisfy the entire spectrum of disability-related fetishes. And, indeed, Katawa Shoujo is considered an eroge, or "erotic game" (though mature content can be toggled on and off). Slap on a cringeworthy title—"katawa shoujo" translates roughly as "crippled girls," and carries the same derogatory weight as a racial slur—and you'll stir the internet into a frenzy.

But the finished product was surprisingly... tasteful.

AN INTRODUCTION: Disability Online

This icon makes the rounds on

May 1^st, known to the blogging

community as Blogging Against

Disablism Day.

I'm not the first person to blog about disability in the arts. This is something I couldn't be more happy about.

The fact that "disability blog"—with quotes, mind you—turns up over eighty thousand results on Google is worth celebrating. Fifty years ago, at the beginning of the disability rights movement, such a wide-reaching forum on the topic would've been unimaginable, nothing more than an advocate's dream. Today, I'm able to type the letters C-I-D-P into a search bar and find message boards, Facebook groups, local meetups, blogs and vlogs—a whole international community of people who share my diagnosis.

When I was thirteen, this blew my mind. In one afternoon, after I'd summoned the courage to Google my new diagnosis, my community of fellow diagnosees exploded from a desolate island of one to a nation of thousands, their voices all reaching me through my screen and speakers. Shouting their indignation at doctors IN ALL CAPS. Shaking pill bottles at their webcams. Passing around links to blogs and forums like shared bottles of champagne.

As I marveled at this new community that I had suddenly and unexpectedly joined, an anxious excitement bubbled into my chest. I realized something then that would forever change me as a writer, as a student, and as a human being.

I had a voice as well. I could speak. And the people of this community would listen.