teafeather

It seems I cannot go through my backlog of RSS feeds without encountering at least one smug anti-ebook graphic or text statement. I wonder if anyone who creates or reblogs these sentiments knows or cares how important ebooks have become for people who cannot read standard print books because of a disability.

For many people, disability is not a real thing that affects real people who live everyday lives and want to do things like enjoy stories, keep up with current events and culture, or seek knowledge of things from the past. It's aggravating that people who profess to love books so much have no concept of people who are slightly different from them valuing the same things even though they can't enjoy books in exactly the same format or container.

Books in electronic format help people with many different impairments access written information.

A person with low vision (legally blind but with some usable vision) may require large print in order to read visually. Large print paper books are available, but the title selection is limited, they are very expensive, they go out of print much more quickly than editions with standard size type, and they are much larger, heavier, and more difficult to hold than standard print books. This last part is especially galling for someone with an additional disability that affects arm and hand strength and dexterity if they must hold the book close to their face instead of being able to rest it on their lap or a table top. In addition, paper large print books are often available only in 14 or 16 point type, when many people require 18, 24, or even larger type sizes in order to read comfortably for extended periods of time. With most ebook formats and display devices, fonts can be adjusted to the size needed, and some color screen devices even support high contrast (yellow or white text on a black or navy blue background) which is helpful for many people with low vision.

Braille readers also benefit from ebooks. Braille books are even harder to come by, and even larger than large print books. In most countries, braille books are only available from government-sponsored lending libraries or a handful of nonprofit organizations that serve blind people. A library may have only one copy of a book, and of that copy becomes lost or damaged, a replacement may never be made. My own local braille lending library lost thousands of books a few years ago due to a mold infestation caused by lack of funding for adequate climate-controlled storage facilities. The embossing plates for those books were not kept on hand so those books can't be replaced. Limited copies mean that someone may have years on a waiting list before they get access to a book they want to read. Even if you are first in line, it can take a couple years for a new book to be made available in braille, if it even gets transcribed in the first place. Having access to a digital braille file or a DRM-free ebook that can be displayed on a refreshable braille device means being able to have access to more books, more quickly, and even keeping a personal archive of files of books you've enjoyed. Can any of you print readers imagine only being able to get books from the library and not having the option of buying your own copy to keep? Never getting a book as a gift?

Text-to-speech is another way that ebooks are useful to people with print disabilities, and not just blind people: dyslexia, other learning disabilities, traumatic brain injuries, brain cancer/tumors, epilepsy, paralysis, cerebral palsy, stroke survivors, etc. If you can't see the page, interpret symbols, hold the book, turn the page, etc., you might be able to hear and process synthesized speech to gain access to the same information. Some text-to-speech programs are optimized for specific circumstances, for example programs for people with dyslexia may highlight the word on the screen as the computer reads it out loud, which can improve comprehension over simply hearing the words from the computer or an audio recording of human speech. DAISY, the combined ebook and audiobook format for people with disabilities (and a close relative of EPUB) is especially suited for this purpose.

And, finally, some people who may not be able to hold a print book and turn paper pages may be able to use assistive technology to use desktop, laptop, or tablet computers to read ebooks in that manner.

So before you snark on ebooks, think about who you may be snarking. Since few people reach old age without acquiring a significant disability, you may be short-changing your future self.

I liked this post about the problems with the "open person" status of a person with a temporary physical disability, especially the phrasing "do help to you." Having help done to you is one of the microaggressions that people with an obvious physical disability deal with nearly every time they go out in public.

For those not familiar with the term, "open person" in this context refers to the status of people who are one the receiving end of social interactions that cross the boundaries of what a person would normally expect or tolerate from a person with a given type of social relationship. Examples are touching a pregnant woman's belly, touching the hair of a person of African descent who has natural hair, asking about a trans person's genitals, or asking intrusive medical questions of a person with an apparent disability or medical condition. There are situations in which these kinds of interactions are acceptable given a socially intimate relationship, but infuriatingly inappropriate when they come from a stranger or casual acquaintance.

Andrea is no stranger to this kind of thing (she has multiple disabilities), it just increased frequency when she recently injured her foot:

http://qw88nb88.wordpress.com/2011/12/03/thats-not-helpful/

All of the following have happened to me in the past month:

1. Accuse the blind person of faking blindness because they are moving quickly and efficiently through space, even in a low-traffic, uncomplicated environment such as a large hallway in an office building.
Yes, moving through space as a blind person takes some practice and concentration, but it is possible. I've had 10 years of experience.

2. Offer unsolicited medical advice, such as "eat more carrots."
I discuss medical issues with my doctors, thanks. My vision problems cannot be solved with vitamin supplements, cornea transplants, new eyeglasses or LASIK surgery.

3. Tell the blind person how and/or when to cross the street
I wouldn't be out alone if I didn't know how to do this safely. I find the curb with my cane (guide dog handlers get shown the curb by their guide dogs) and then listen to traffic patterns. Don't tell me "You can cross now!" I know it's tempting, but it's really not helpful, especially since half the time people try to tell me this, they are wrong.

4. Block the crosswalk when you stop at an intersection
The crosswalk is for pedestrians, not for cars. It's bad enough for a TAB pedestrian to have to step around your car closer to oncoming traffic, but it's far worse for a blind person (or someone in a wheelchair, or a short person or someone who moves more slowly than average). For added fun, combine #3 and #4.

5. Ask personal questions of blind strangers
I can't imagine that sighted people get as many invasive questions as I do. I certainly get asked less stuff when it's not obvious that I'm blind. I'm happy to answer general blindness questions when I have the time and brain-points to spare, but questions about my medical history and personal life are none of your business.

One of the irritations of having multiple disabilities is that I'm never 100% sure of what happened in a particular awkward situation. Are people treating me strangely because I'm blind? Am I not understanding what's going on because I'm autistic? Or is this person actually behaving in a non-standard way that has nothing to do with me?

This afternoon, I was standing out in front of the grocery store, waiting for my friend to pick me up. A woman shouted something like "have a great day!" but I didn't know if she was talking to me or someone else. This is another one of those little life irritations: I don't want to be rude and ignore people who are actually trying to communicate with me, but I've also been in situations where I've assumed that someone was talking to me and received a nasty, "I wasn't talking to you!" reaction when I tried to reciprocate. I can't win, especially in a world of bluetooth headsets.

The woman approached me and stuffed a dollar bill in one of my grocery bags. I was baffled. I don't know this woman (as far as I know, anyway) and she has no apparent reason for doing this. I've heard of blind people receiving these unsolicited "gifts" from pitying strangers, but it's never happened to me before. I asked, "Excuse me, what are you doing?" and she just said "giving you this," which was an accurate answer but not a particularly helpful one. For all I know this was her idea of a random act of kindness to a stranger and had nothing to do with my disability.

My friend, who saw this as he drove up, said that the woman looked like she was drunk or high. I guess I'll never know what really happened. I left the dollar bill in the tip jar at the restaurant we went to after I dropped the groceries off at home.

In trying to figure out what I want to do with this blog (other than participate in blog carnivals) I've thought about doing book reviews. I read a lot* and think about what I read when I'm not reading. The more I think about it, the less I want to write actual reviews, and the more I wanted to write about my personal experience with the book and the kind of thinking it generated within me. I'm not very good at recaps or at persuading people to read or not read a particular book, which seems to be the format of a lot of reviews. I also want to write about other media and how it invades my mind, so the "babbling about media" will also include babbling about television, movies, podcasts/radio, magazine/newspaper articles and music.

It might be helpful to have the context in which this media is consumed (i.e. my mini-biography and circumstances)

I'm blind (low vision/high partial). I can read large print but tend not to read very many large print books because they're just too awkward to hold and transport. Most of the books I read are audiobooks from the Library of Congress National Library Service for the Blind and Physically Handicapped (AKA NLS). I'm fortunate to have been one of the early pilot testers for BARD, which is the downloadable audiobook service I've been enjoying since 2006. Prior to that I was a heavy consumer of NLS books on cassette tape, starting in 2001. I occasionally get large print or audio books from the local public library. I like ebooks, too, some of which are from the public library's ebook service, and some of them are from Bookshare.org, a nonprofit organization that provides ebooks in accessible formats to people with print disabilities. My braille reading skills are very poor so it's not practical for me to try reading whole books in braille. I have yet to work up the motivation to improve my braille reading skills. Blindness affects me in ways other than reading, of course. I'm a white cane user but would like to have a guide dog at some point in the future.

In addition to the disability that's usually most apparent to outsiders, I am autistic. I perceive and process sensory information in ways that most people don't. This complicates a lot of the traditional alternative techniques and assistive technology that I use as a blind person. Audiobooks, for example, are actually more difficult for me to understand than are large print books. I basically have to live-caption audiobooks inside my head in order for them to make sense. It infuriates me when people equate audiobooks with laziness or say that I haven't "really" read a book if I've listened to it. My other brain-related challenges are depression and anxiety.

Personal timeline:
I was born in 1981. I grew up as a "gifted" child. Unfortunately because of this many of my developmental and social problems due to autism were ignored or seen as my fault/laziness. I was bullied a lot, even singled out in junior high by the guidance counselor as the "lowest on the social ladder." But, of course, this was framed as being my fault for being a weirdo, not the fault of the people who wouldn't leave me the fuck alone. This didn't exactly aid or improve my social skills or other aspects of my development. I barely graduated from high school because I was so mentally messed up from various things that I just could not keep up with school work. I tried college twice but flunked out both times due to anxiety and major depressive episodes. I've been working unskilled jobs since then. I have been at my current job since mid-2005. I live alone (well, I live with 2 budgies but no other humans) in an apartment in an inner-ring suburb of Minneapolis. I'm above the federal poverty line but not but nowhere near middle-class.

I'm asexual. I'm genderqueer. I'm introverted. I'm an atheist (grew up that way, for the most part). My body is female, tall, and fat. I'm not sure what to label myself as racially/ethnically but I basically look white and am perceived as white so I guess that's the most useful label even though it's not 100% accurate. I hate body and identity policing. This is me, if you don't like who or what I am, that's your problem and not mine.

*No, really, I read a LOT:
2010: 124 books/ 38,443 pages
2009: 77 books/ 25,399 pages
2008: 61 books/ 17,133 pages
2007: 52 books/ 14,579 pages
2006: 69 books/ 23,240 pages

I read a lot of content related to social justice, but I'm afraid of participating in those communities. It's not that I don't have experience as a marginalized or oppressed person that I can draw upon. It's because I do.

I don't want to have a pity party or play Oppression Olympics, because nobody wins at that. I want to show how even people involved in social justice movements can fail to recognize how their own privilege (in various categories) can exclude people in marginalized groups.

Class, and education as a component of class, is one of the main issues. I'm in a lower socioeconomic bracket, and have less education than my parents. I flunked out of college, twice, because of mental health issues. I didn't try a third time because the money available for my education ran out, and so has my confidence in my ability to succeed at any kind of higher education institution. I make a couple dollars over minimum wage in a so-called "unskilled" job at a gas station. I'm not starving or homeless, but I do live a fairly frugal lifestyle with a few cherished small luxuries, mostly afforded by the fact that I have never owned a car because I've been legally blind since my late teens. Of course being blind makes some things more expensive, but that's not really the topic of this post.

What I'm trying to get at is that a lot of social justice talk comes from college educated, middle class people. I'm not hating on people for their success, and I'm not cursing sour grapes, but I do feel left out because a lot of social justice related talk uses vocabulary, concepts, and references that I don't have access to because I didn't get exposed to them in school. Also, as previously mentioned, I'm blind so I can't access a lot of materials on my own. Your textbook changed your life? Great! I'd love to read it! But the library for the blind doesn't have it and I can't read regular print books. I used to be able to scan print books but my scanner broke a few years ago and I no longer have access to the (extremely expensive) OCR software I used to use, so even if I replace the scanner it wouldn't be much good to me.

What I'd like to see is more freely available educational materials, in accessible formats, so I don't feel like an ignorant jackass every time I want to express something or inquire further into an interesting concept. Stuff that goes beyond 101. It's my hope that there are people out there who want to educate people who can't afford to pay for it.

I am fortunate, as a worker in a store that's open 24 hours a day, 7 days a week, to be guaranteed to have my weekends free the majority of the time. Weekends are my time to rest and recharge after the stress and fatigue of the working week.

There are many things that give me joy and comfort over the weekend that I simply don't have the time and energy to savor during the work week. I like being able to go to bed when I feel tired and not having to worry about when I will wake up. If I wake up earlier than I normally do (my work-week alarm is set for 4:00 AM) I can enjoy the peace and quiet before my neighbors (human and otherwise) get up. I can listen to the first stirrings and morning calls of the wild birds. I can watch the light patterns change as the sun rises. I usually do this in the reclining armchair in my living room, which faces my patio door. If the temperature, humidity/precipitation and level of insect activity are agreeable I might even spend this time out on the patio itself. Right now the snowdrifts on my patio are slightly higher than the threshold so I haven't had much outdoor lounging time in the past few months. If my processing and attention capabilities are sufficiently high, I might also listen to an audio magazine or a podcast. I drink a few cups of tea and nibble on breakfast.

When I feel awake and alert enough, I'll change into workout clothes and go for a walk. Sometimes this is just a circuit of the neighborhood but other times I'll go to a nearby park. If I'm feeling really energetic I'll go to my absolute favorite place to walk, the Nature/Environmental Education Center. The Nature Center walking trail opens at dawn. In the summer I'll sometimes endure waking up to an alarm clock on weekend just so I can go walk this trail right at sunrise when I'm extremely unlikely to encounter any other humans, and very likely to encounter interesting animals that are scared into hiding by more boisterous humans, or are crepuscular in nature. This park doesn't allow dogs (except assistance/service animals for people with disabilities) so I was very surprised, and angry, the first time I saw what I initially thought was an off-leash fawn-colored Great Dane, but turned out to be a white-tailed deer! I had no idea that a forest that small in an inner-ring suburb could support a deer population (there are at least 6 in the herd) but I guess it must be possible because they're there. If the ground isn't too wet when I encounter them, I like to sit down on the trail and watch them graze/browse for a while. Another favorite of mine are the snapping turtles. I'm not sure what they do in the wooded area of the park, but I often encounter them as they're crossing the walking trail from the lake/swamp area to the forest area. Then, of course, there are the birds: the usual little brown difficult-to-identify finchy things, bluebirds, orioles, robins, blackbirds OOO-KAA-REE!-ing everywhere, chickadees, egrets, mallards, wood ducks, Canada geese, bald eagles, kestrels, peregrine falcons, etc. Walking there, around the lake, and back home again takes about 2 hours but it's worth it!

When I get home I'll have a snack and some more tea, shower and change into non-sweaty clothes. If it's after 10:00 AM I'll do laundry. This is early enough in the day that I won't be competing for laundry facilities with other tenants in my building, but not so early that I'm likely to wake people up with the noise. While waiting for wash and dry cycles to complete, I'll putter around on the computer, read a book or watch a video. Sometimes I'll play some kind of computer game that doesn't require language or auditory processing while listening to an audiobook. For some reason I tend to comprehend and retain more information from an audiobook if I'm doing some kind of fidgeting activity while listening. If I'm feeling fatigued or overwhelmed by language processing I might go back to looking and listening out the patio door.

Later in the afternoon or early evening I sometimes go out with friends to a coffeehouse. I am fortunate to have some friends who are also fairly introverted and don't feel the need to fill every moment we're together with interaction. We can switch between speaking, instant messaging, and parallel solo pursuits like reading or web browsing without it feeling awkward and weird, or people feeling hurt or ignored.

That's what I imagine for myself when I exchange "Have a great weekend!" wishes with my co-workers when I leave the store on Friday afternoon. I hope that they find their own sources of bliss over the weekend as it makes Monday more bearable for everyone.

This post is part of the Spectral Amoebas Blog Carnival: http://writingfromfactorx.wordpress.com/2011/02/01/spectral-amoebas-round-up-post/

One thing I have slowly come to realize over the course of my life is that there are many questions in life that do not actually mean what the words in the sentence mean. For example, "How are you?" usually means, "Will you acknowledge me and interact with me?" and the standard response, "I am fine," actually means, "Yes, I will acknowledge you and interact with you." Another layer of this social script is our cultural emphasis on being positive and optimistic even when things are not going well. Deviations from this script are more likely to happen and be accepted by both parties if they know each other well and have established a certain amount of emotional intimacy in their relationship.

Questions involving the word "like" are more variable in their accepted responses but can still have negative social consequences if the wrong answer is given. In a culture that values extroversion over introversion, asking someone "What do you like to do in your free time?" is a way to judge how well a person fits into these expectations. As an introverted person whose interests mostly lie in solitary pursuits, most of the ways I could honestly answer that question tend to make people who do not share my enthusiasm for those activities confused in the best case or angry in the worst cases. I am "boring" or "need to get a life" or "antisocial." People using this term do not know the difference between introversion and antisocial behavior, and that truly antisocial people seek out social interaction so they can act in destructive ways. When I am feeling especially frustrated by these assumptions I have to suppress my desire to point out that criticizing someone for giving an honest, non-offensive answer is a little antisocial itself.

I do desire some social interaction, but find it very difficult. Even when I seek out groups of people who supposedly share my interests, I feel awkward and out of place in those groups because for some reason the conversation frequently veers into territory which which I am not comfortable or in which I have little interest. In fiber arts groups for example, there is a lot of talk about spouses/boyfriends and children. I do not have much to contribute to those kinds of conversations.

I have experienced a lot of confusion and stress surrounding what "liking" actually means. Expressing a liking for something that isn't accepted, or dislike for or indifference to something that one is expected to like is socially dangerous. It can be something as simple and innocuous as pretending to like an itchy, ugly, ill-fitting garment given as a gift or as complicated and dangerous as being too afraid to say "no" to kissing and groping by a sexually aggressive person out of fear of the consequences of being impolite. That latter category happened to me two years ago and still has the power to make me feel physically ill and give me occasional nightmares.

I struggle to understand how sexual people think in order to best respond to liking-questions that assume that everyone is sexual. I do not want to give the Asexuality 101 talk to people and even if I did I would probably not succeed in communicating the basics effectively, especially to an unreceptive and skeptical audience.

As an asexual autistic person, I know I need to work on being more assertive. I just have no idea how to do that and I have so much emotional baggage about the dangers of being perceived as attention-seeking, manipulative, deliberately difficult, rude, selfish, etc.