Interview with Lynne Jamneck, editor of Perhiphery

When my work is in an anthology it's always great fun when my copy of the book arrives and I discover what and who else is between its covers. The biggest thrill is when I get totally absorbed by the work of the other writers and can't put them down. These are the books that make me realize how lucky I am to have been included. Periphery is one of these books.

Periphery was originally published as a paperback by Lethe Press in 2008. I'm thrilled that it has now been re-released as an ebook by Untreed Reads because I anticipate that this will give more readers a chance to enjoy it, particularly science fiction (sf) readers who may not have thought it would be their cup of tea because of how it was originally subtitled.

Although I dabble in speculative fiction, I'm not an sf writer, so I could never have conceived of creating this collection, let alone of editing it. I've therefore been very eager to find out what was going on in the brain of the person who did, Lynne Jamneck. I have pounced upon the re-release of Periphery to ask Lynne a few questions, and I thoroughly enjoyed her answers. I hope you do, too.

Sharon: My first question is, why did you want to edit an anthology of erotic lesbian sf?

Lynne: I wanted to put something together that could be both entertaining and subversive. Sex is such a great divider; what some find erotic or sexually alluring others find immoral, degrading, dangerous. sf introduces the context of future possibilities, and with that, future ways of thinking. The moral panic that persists around the world with regard to what people do in their own bedrooms behind closed doors (or open ones) can only change if people are willing to challenge their own thought processes.

Sharon: I remember at the time that you were still seeking submissions -- and I hadn't sent you anything because I thought I was not "sf enough" -- that you said you'd gotten a lot of good "sex in space" pieces and that that wasn't what you were going for. That gave me the nerve to submit something. Although there is some space opera in Periphery (such as what I think is one of the hottest and funniest stories, Elspeth Potter's "Silver Skin"), you were clearly going for something unique. So, what would a lesbian "sex in space" anthology be, and why didn't you want to edit one?

Lynne: I'm so glad you decided to send me something. "Sideways" is one of the stories in Periphery that gets positively mentioned to me almost always when I discuss the antho with someone who has read it.

What I was trying to avoid was a collection of stories that was, basically, erotic stories set in space, where the context of space or the future was incidental to the stories. I wanted the futuristic elements to be intrinsically coupled with the eroticism. The stories in Periphery are about loss, hope, possibilities, passion, resistance -- elements that, to me, are an integral part of humankind's evolution as a species. We stick our toes into ethical, political and social lakes filled with crocodiles on an almost daily basis as we gaily blast off into Tomorrow. I like stories to say something, even if it's something that doesn’t come across immediately. That's part of the fun of reading, isn't it? Sex in space is fine. It's great! But honestly, not for twelve stories in a row.

Sharon: I was intrigued by how cohesive the book was in its themes. One is a classic sf theme -- the future, especially dystopia, and another popular sf trope, crime (punishment, imprisonment, fighting back,  revolution). Did you seek out these themes or were they simply in the air when the stories were written? What, if any, effect do you think a lesbian sensibility had to do with it?

Lynne: I never intentionally sought out any particular theme. The tropes you mention are – sadly – always present somewhere in the world. The notion of "first world countries" is true only insofar as it designates a group of people who are materially well-off. Right now, I can rattle off the names of countries that are in actual fact dystopias owing to the presence of archaic laws, moral oppression, anti-intellectualism and spiritual poverty. "Fighting back" does not always indicate violent physical behaviour, but it remains the context in which many people frame rebellion.

As for a lesbian sensibility… I'm very careful when talking about stuff like this. I'm not a good feminist, haha. Obviously, there is a queer history of oppression to draw from, which is undeniable. I'd like to think that fighting back and being revolutionary isn't limited to one particular gender or sexuality, though; rather, it's a human trait.

Sharon: One theme which totally surprised me was illness and disability. In my own piece, disability is central, but illness-related themes appear also in several others (Gwyneth Jones's "The Voyage Out," Kristyn Dunnion's "They Came from Next Door," and Lyda Morehouse's "Ishtartu"), and most notably Melissa Scott's "The Rocky Side of the Sky," which to me felt like an sf version of the Karen Thompson/Sharon Kowalski story. Because it's so subtle and organic in these stories, I don't know if it hit other readers' radar, but because I'm one of few erotica writers who frequently write disabled characters, it caught my attention. What's your thought about why illness and physical difference are an element in several of the stories?

Lynne: That's an interesting question. I think people who are "different" are uniquely qualified to address those social aspects that label them as somehow not being "normal. Perhaps physical otherness provides a perspective which enables those with illness to perceive the future less rigidly. That's a fairly important ability, in my opinion, to have, writing-wise, if you are going to write sf. Well, any speculative work of fiction, really.

Sharon: Humor's very important to me, as a writer and as a human being. Speculative fiction has so much humor potential because there's such a big field to play in, with& The Hitchhiker's Guide to the Galaxy being the most obvious example, but there's also a lot of subtle humor in sf. Do you have any favorite winks or nudges in Periphery?

Lynne: You mentioned Elspeth Potter's "Silver Skin" earlier. I have to agree, there is some fairly wicked word-play on display in that story that subtly pokes fun at a number of sf conventions. Also, one of my favourite sentences in the anthology is the first one from the first story, Marianne de Pierres' "Origins." Read it and you'll see what I mean! [Note from Sharon: I did, and I burst out laughing.]

Sharon: Although Periphery is classified as erotica as well as sf -- and it was a finalist in the erotica category for a Lambda Literary Award -- the stories here are not usually what the public thinks of as "erotica," I think. There's not a lot of "throw down and fuck" going on, which is what I think some readers loved about it and others found disappointing. How did you approach the erotic element in choosing material?

Lynne: Several times, when I initially pitched the idea to publishers, I had to stress the fact that it would be a sf anthology with erotic aspects. Nevertheless, as you mentioned, it was shortlisted for a Lambda Award in the erotica category. Likely, that's where some of the reader disappointment may have stemmed from. To a degree, the anthology was marketed as something it wasn't entirely. Untreed Reads has just re-released Periphery. The publisher and I agreed to truncate the original title, "Periphery: Erotic Lesbian Futures" to simply "Periphery." Hopefully, this will put it on the radar of sf readers who may have missed it first time around.

The erotic elements had to be integral to the stories in a way that, if it was removed, the story would be altered in such a way that meaning or emotive response would be compromised. I wanted the eroticism to be a reflection of the characters, their thoughts, hopes and desires beyond a sexual scope. Eroticism is a complex beast. It involves psychology, and can to a large degree be dependant of the culture that an individual lives in. In that sense it's fluid, making it hard to pin down a static, go-to definition. But that's probably where ninety percent of people's issues with, and misunderstanding of sexuality and gender concepts stem from – the inability to clarify why something is the way it is, when instead they should be considering that we don’t live in a world where complex organisms like people can be shoved into a preconceived mould of "normality."

----

Thank you, Lynne, for sharing your process and insights! The first time around, Periphery got terrific reviews and was a Lammy finalist. I'm really hoping that this recent re-release in digital format will give more people a chance to enjoy this great collection. Grab a copy here. (Or as an Amazon Kindle or a Barnes & Noble Nook.)

Languaging Disability: Where Do "Ability" and "Dis/Ability" Fit In?

This post first appeared at Ability Maine and is cross-posted with permission.

As a writer with a disability, I read a lot of writing about disability, discussions of language about disability, and the like. There are noticeable differences in language usage around disability depending on geography, disability status and type, and community. This has led me to some conclusions about who uses which language and why.

Before I discuss these differences, I want to stress that I am aware that these conclusions are generalizations. I know there is wide variation within the groups I'm referring to which goes beyond a few exceptions. Nonetheless, I've been active in the disability rights community and have been writing (fiction, poetry, and most often, nonfiction) professionally about disability since 1992, so I think I have a pretty good grasp of the broader implications.

The first four short sections (below) cover material most have some familiarity with. However, recent reading has alerted me to the fact that many people who are trying to be disability allies are not as aware of disability rights perspectives on the less obvious words. Thus, I've decided to provide an overview of some of the more widely understood issues before getting into the newer ideas.

Euphemisms and Other "Don't Go There" Words

Do not use these terms. Some have horrible histories. Most were created by nondisabled people, and I almost never hear a disabled person using them (except with loathing).

On the saccharine, ridiculous, and skin-crawlingly euphemistic side we have the following:

• handi-capable/handicapable
• differently abled
• physically challenged (or mentally challenged or any form of "challenged") 
• special needs or "special" in general

On the outdated, mean, or "hipster" hit list of words I hate, please find:

• handicapped
• cripple
• invalid
• defect/defective
• the R-word or any of its incarnations
• lame (as in "That's totally lame" or "He's so lame, dude")
• any of the zillion offensive terms used to refer to people with mental health disabilities (crazy, nuts, bonkers, etc.)

Also, please don't use "the disabled," as if we are some monolithic entity that shares a hive mind. I usually see "the disabled" as part of a list that refers to "children, the elderly, and the disabled." In other words, people who need to be cared for, and thus, not really people in our own right so much as  recipients of others' attention or sources of employment. Do you generally refer to gay people as "the gays" or "the homosexuals," to Jewish people as "the Jews," or to people of African descent as "the blacks"? I hope not! If you're not comfortable with "the gays" or "the blacks," please don't use similar language about people with disabilities (PWDs).

PWD versus Disabled Person/People

I'm not going to get into this one. Scads of articles and blog posts have already been written about it. Basically, the generally preferred language in the US is "person/people with (a) disability" (referred to as "person-first language") and in most other countries it is "disabled person/people." However, there are people in and out of the US who disagree with "the party line" and prefer the other. I am fine with either one. They both have merit, and sometimes one or the other works better depending on the situation. (For more on this topic, check out this style guide by the National Center on Disability and Journalism.)

Cultures within Communities

There are some exceptions to the PWD/disabled person guidelines in the paragraph above. There are certain communities of people who prefer different language. Deaf people are an example. People who are deaf or hard of hearing who use American Sign Language (ASL) and identify as being members of the Deaf community usually do not identify as having a disability. They also use a capital "D" for "Deaf," and "Deaf" refers to anyone with hearing loss who is part of Deaf culture.

Autistics are another example. There is a movement among Autistics to be recognized as a community of people with unique and valuable attributes, not as children who need curing. They use the term "Autistics" (with a capital "A") instead of "people with autism" to indicate their community identity and to show their separateness from families of people with autism or other people concerned with autism who are not Autistic.

There is also, within virtually every disability subgroup, language that is mostly used "in-house." As a person with Lyme disease and multiple chemical sensitivity, I often refer to myself and others with these illnesses as "Lymies" or "MCSers." I have seen people refer to themselves when addressing others with their same disability as Deafies, blindies, crips, gimps, quads, paras, and crazies. This does not mean that people outside of these groups should use this language! In many of these cases, they/we are reclaiming terms that have been used to hurt them/us or they/we are using these words fondly within their/our subculture. Unless you have the disability being referred to, don't use these words. Go with "person/people with [proper name of disability]" instead.

Whaddaya Call Normal People?

First, please don't use "normal" to refer to people without disabilities. That implies that PWDs are abnormal, which is a perception we're trying to change. Having a disability is as much a part of the human experience as anything else. It is normal to have a disability!

I'm sure some of you are thinking or have read "able-bodied/AB" or "TAB" (temporarily able-bodied). The problem with "AB" is that it indicates that all disabilities are the result of physical impairments, such as mobility issues. However, there are a multitude of disabilities that don't fall into this category. Mental health disabilities, cognitive disabilities, and autism are examples of disabilities that do not necessarily have anything to do able-bodiedness.

TAB seems cool, but it's actually problematic. It's based on the belief that everyone will develop some disabilities in old age. Some people use TAB to try to raise awareness that disability is a normal part of life and something that can happen to anyone. I definitely support the goal of non-otherizing PWDs. After all, I lived my first twenty-odd years without disabilities, and now I have multiple disabilities.

However, the fact of the matter is that not everyone does develop a disability. Some people never reach adulthood, let alone old age. You can be perfectly healthy and nondisabled until you die in a car accident or of a heart attack. My grandmother was much healthier and more active at 82 than I was at 28.

In addition, I've seen people use TAB to dismiss the validity and uniquely different perspectives and experiences that come from living with disability. It's much like saying, "Well, I have glasses, so I'm disabled, too," or saying to a lesbian or gay person, "Well, everyone's bisexual," to negate the reality that living as a queer person in our culture is different than living within normative sexual/familial culture.

So, what's the answer to what to call nondisabled people -- i.e., people without disabilities? It's in the question! It's "person/people without (a) disability/ies" OR "nondisabled person/people"! What could be simpler?

One Mongoose, Two . . . Mongeese?*

The assertions I've made up till now are pretty widespread. You can find lots of blog posts, articles, books, and papers that agree with me. What I haven't seen much discussion about is the question, "What is the category name for disability/nondisability?" Although I get irritated when I come across people using terms I don't like for this, I've only recently decided I must write a post explaining my position.

The impetus was an active discussion on Twitter, started by author Kate Bornstein when she was crowdsourcing for her next book, My New Gender Workbook. She asked on more than one occasion what term to use to refer to the state of having or not having a disability. In other words, when talking about oppression, we often refer to issues of "race, class, gender, sexual orientation, and religion." Any of these words work to talk about both people who are in the marginalized position and those in the privileged position. For example, one of Kate's tweets said something like "Race is to racism as ___ is to ableism." (Omigod! It was like taking the SATs all over again!)

Most people said "ability." I strongly disagree with this, even though it seems to be most people's default. For instance, I googled "race socioeconomic gender sex ability" and got lots of hits for "diversity" policies or studies, or antidiscrimination policies. Here are some examples:

• These include but are not limited to age, ethnicity, socioeconomic status, gender, physical and cognitive abilities/qualities, race, sexual orientation, gender ...
• These can be along the dimensions of race, ethnicity, gender, sexual orientation, socio-economic status, age, physical abilities, religious beliefs, political beliefs, ...
• in terms of race, ethnicity, culture, socioeconomic status, gender, sexual orientation, abilities, ...  

I don't think there's been enough thought or discussion about this, both inside and outside the disability community. It seems like people are using what's handy or conventional, without much actual familiarity with disability or what it means to classify disability status under "ability."

On the other end of the spectrum are people involved in disability studies who tend to give words and their meanings a lot of thought. Some of them use the terms "dis/ability" or "dis/Ability" or "(dis)ability," and I find this problematic, too. I did find, in the Google search above, one example of this (below), followed by further examples from disability studies texts:

• all people, regardless of race, gender, sexual orientation, class, (dis)ability, language, or religion, ... 
• "...dis/abled people all face the threats of an increasingly punitive and governing ableist society." (Dan Goodley, Foreward Contours of Ableism, xii)
• The Unveiling of (Dis)ability: Essays on Silence, Voice & Imprints by Fiona Kumari Campbell's

My preferred term to use in laundry lists of -isms is "disability," or where it is necessary to distinguish between disabled and nondisabled, "disability status." I will explain why after I explain why I don't think "ability" or "dis/ability" work well in many of the situations in which they're used.

Ability

I don't know the people who replied to Kate's query, so I don't know their disability status. (I'm assuming both disabled and nondisabled people replied). However, my experience is that the general public, particularly nondisabled people or disabled people who are not heavily involved in disability rights work, are more likely to use "ability" to mean "the category of having or not having a disability" than people involved in disability rights activism.

Why is using "ability" this way problematic? The first reason is that it's inaccurate and misleading because whether or not one is disabled doesn't actually have much to do with one's abilities. I know that the letters "a-b-i-l-i-t-y" are contained in the word "disability," but the etymology of the word and its meaning as a social construct are not the same thing.**

For example, I have loads of disabilities. How I identify them or myself as disabled depends on the circumstances. I could say that my disabilities are MCS, myalgic encephalomyelitis (ME), and Lyme disease, but this doesn't tell you my "abilities" at all, does it? It tells you my diagnoses, and it might tell you something about my limitations and symptoms, if you are very familiar with these diseases (which is unlikely unless you are severely disabled by these diseases, too). However, even this is limited information because, like most chronic illnesses, mine occur on a spectrum and affect me differently than they affect others with these illnesses.

I could get more specific about "abilities" in identifying myself as "disabled." I could say, "My disabilities cause chronic pain, exhaustion, limited mobility, cognitive impairment, sleep disturbance, and intermittent speech impairment." That would give you some hint that my "abilities" to speak or ambulate or sleep are not typical, right? However, it doesn't really provide any detail. It doesn't give you a true sense of how these issues affect me, how they wax and wane, or how I live my life to accommodate them. Much more importantly, what I'm talking about here is not in the realm of what I call abilities at all. They're what I would call "symptoms" or "functionality" or "limitations."

When someone asks you what your abilities are -- for instance, in applying for a job -- do you list "going to the toilet unaided"? Do you list falling asleep with ease, or seeing, walking, or speaking? I sure hope not, because if you think you need to list such things, your potential employer seems likely to be discriminating on the basis of disability.

If I am having trouble moving my legs, to me that is not about my "abilities"; it is about my functionality, symptoms, or limitations on that given day. I may have limited ambulatory function, but that doesn't mean that I can't run my dog for a mile, because I can -- using my power wheelchair.

Function varies a great deal not only between people with different disabilities, but also between people with the same disabilities, and quite often day to day (or minute-to-minute). For example, many people with disabilities have totally functional legs (or lungs, hearts, eyes, or brains) and many have less-than-totally functional legs (or lungs, hearts, eyes, or brains). Among those with functional limitations, some have static levels of function or lack of function, but many have variations in functionality. Sometimes I can move my legs with great difficulty, sometimes with ease, and sometimes not at all. My functionality on this front varies. The same is true of my standing, walking, sitting up, speaking, reading, brushing my teeth, and on and on.

In general, when you speak of someone's abilities -- yours or another's -- you are talking about their skills, accomplishments, natural talent, or knowledge set. One of my abilities is proofreading. I can take a document that someone else wrote and fix the errors in spelling, punctuation, and grammar. I have this ability because I learned the basics of proper English spelling, grammar, and punctuation in school and then was taught proofreading by a mentor when I had a job that required this skill. I have maintained this ability by making use of references, such as dictionaries, thesauruses, and style manuals. If I suddenly lost the ability to proofread, would this make me disabled? Should we assume that anyone who publishes a blog post that is full of errors in grammar, punctuation, and spelling is disabled? (I'm working very hard to not make a snarky joke here.)

Some abilities come naturally (e.g., being naturally athletic or musical or "good with animals"), but to excel (as a runner or singer or horse trainer) one still has to supplement inclinations with learning. In addition to proofing, other abilities or talents I have include dog training, baking, swimming, applying makeup, and public speaking. The fact that I'm not physically or mentally able to do all of these things all the time or even most of the time does not necessarily mean that I can no longer say these are abilities of mine. For example, even if I can't swim at this time, I still have a memory of loving to be in the water, of a sense of ease and freedom of movement in the water that I never had with land sports. Being unable to exert myself in the water now and having a PICC line that can't get wet doesn't mean I've lost the ability to swim. I still remember how to swim freestyle and backstroke, how to do flip-turns.

My other objection to using "ability" to mean "disability status" is that it is a euphemism. I find euphemisms distasteful for several reasons. The first is that they support a subtle form of ableism, a tiptoeing-around-the-topic that suggests discomfort with talking about disability. It says, "I'm not sure if I should acknowledge disability as a real thing that is okay and normal to talk about, so I'm going to use this vaguer term so everyone can feel more comfortable about not naming 'disability.'" Not including "disability" in a direct and clear way usually results in PWDs shouldering the onus of awareness and inclusion.

Euphemisms are also, by definition, not quite honest. This is true of saying "ability" when you really mean "disability status." For instance, when people use "ability" in their laundry list of demographic insider/outsider groups, they don't mean "ability," they mean disabled or nondisabled. In general conversation, when people mention "ability," they are almost never talking about disability status.*** They really mean "what this person is good at." As in, "She has fabulous artistic ability," or "I have no ability to decorate a cake so that it resembles the picture in the recipe," or "That team's fielding ability is deplorable."

Can you imagine someone saying, "What's his ability?" And being answered, "Nondisabled"? It doesn't make sense!

Lastly, similar to other disability-related euphemisms, the use of "ability" to mean "disability status" carries condescending and marginalizing baggage. It's like someone referring to a PWD as "special" or having "special needs" when what they really wish to convey is "this person requires a ramp and a communication board to participate in this class." (Or sometimes what they really mean is "this person will take more time and energy than I think they are worth.")

Dis/Ability, DisAbility, and (Dis)Ability

The other terms I'm seeing used increasingly among academics are variations on "dis/ability" or "(dis)ability." Typically I see this type of usage among disability studies people. I attribute some of this to the postmodern love of deconstructing words, and using creative punctuation to highlight the (de)construction of language and meaning. (See? I can do it, too.) I have tried asking disability studies professors and doctoral students why they use these terms, but I mostly got a lot of very emphatic replies about why they don't like them and use other language instead. So, the best I can do is guess. (If you're a person who uses one of these types of constructions, please comment! I'd love to know if my guesses are accurate.)

One of my guesses is that these constructions serve different functions for different people. I know some disabled people who use "dis/Ability" and "disAbled" because they're trying to focus the reader's attention on the fact that people with disabilities are "able" -- in other words, not useless, incompetent, or inadequate, which are longstanding general beliefs about disability. Others seem to use (dis)ability or dis/ability to be inclusive of both those with and without disabilities without writing extra words, much as many feminists used to write "s/he" instead of writing "she or he" or "they," etc. The only disability studies professor who did reply to my query (although she doesn't use these constructions herself) said that she thinks the slash usage is "meant to indicate the inseparability of the concepts 'abled' and 'disabled.'"

There are several problems with these usages. One is that they're awkward and inaccessible. They're not likely to be adopted by the masses. But that's the least of my concerns.

Mostly, I don't like these usages because they carry the same problems as "ability"; any configuration of dis/ability or (dis)ability focuses on "ability" as a category that is meaningful to disability, which is false. As I asserted above, disability is not about ability or inability. People who do not have disabilities are not "abled," they are nondisabled. Disability is a social construct. While I have a lot of life experience in common with people who have certain types of disabilities -- usually chronic illnesses that involve a lot of pain or fatigue, and isolation -- the only thing I have in common with all disabled people is ableism. Becoming friends with a number of blind people and Deaf people has taught me this more than anything else. Most of my friends who are Deaf and/or blind have very little in common with me in terms of our day-to-day lives (except if we have assistance dogs, which is a mutual bonding point). Since ableism takes so many forms and is such a vast, integral part of every aspect of our society, we can still end up with a lot of shared experiences -- denials of access, condescension, discrimination, stereotyping, and on and on -- all of which is not about any functional impairment but about ableism. However, such experiences have nothing to do with what I'm actually able to do versus what they are able to do (which is generally a hell of a lot more than I can do).

I also really don't like to see "(dis)abled" used in reference to me. I am disabled. I have disabilities. The parenthetical "(dis)" seems to suggest that those of us with disabilities are also partly "abled" (i.e., nondisabled). And there is no part of me that is nondisabled because it is a part of my identity and life experience. Being disabled is as much a part of who I am as being a woman or an American or a lesbian or a Jewish person. None of these parts of me are all of who I am, being a disabled person is not all of who I am; but I can't leave that part of me behind as if it existed in another body any more than I could divorce myself from being human.

When I see dis/abled used about me, it feels like a lie. It's like "differently abled" or "handicapable" -- as if the writer is trying to take my reality away and make it into something palatable and hidden. I want to be respected and understood in my entirety and my complexity. That includes my disabilities -- the suffering they have caused me -- physically, emotionally, and socially -- as well as the insights I've gained and the mundane boringness of my life, which is like so many lives, regardless of disability.

My Proposition

In most cases where people are now using "ability" in reference to disability, they can simply use "disability." After all, who is turned away from a job, excluded from history, made fun of, prevented from entering a building, or denied communication access because they are not disabled? Certainly nondisabled people can wind up in such situations, but it's never because they don't have a disability. Thus, "ability" can easily be replaced with "disability" in all of those nondiscrimination or diversity clauses, e.g., "Nobody will be turned away due to race, gender, sexuality, religion, or disability." Period. It's really quite simple, folks.

For syntax sticklers, I have a second option. In cases where you really need to make clear that you are talking about any person or group of people, whether or not they have a disability, you can use "disability status." It's like saying "national origin" or "socioeconomic status." For example, I welcome your comments on this post, regardless of your disability status. I really do.

------
Footnotes:

*This is a reference to a joke I grew up with. A European man is in the import/export business. He mostly deals in furnishings, but a valued customer says he will pay handsomely for two mongooses. The importer isn't used to requesting animals, but he doesn't want to lose this business. He also doesn't know what the plural of "mongoose" is; is it "mongeese"? "Mongooses?" So he wires his Asian contact: "Please send a mongoose. While you're at it, send another."

**Getting into the etymology and social constructs requires more research and space than I have for this piece. Hopefully, I can address those topics in a later piece.

***Yes, if you look up "ability" in the dictionary, it will include in its definition aspects that can relate to disability, but it also includes some aspects that I very much think should be divorced from disability. For example, here is the first set of definitions at Dictionary.com:

1. power or capacity to do or act physically, mentally, legally, morally, financially, etc.
2. competence in an activity or occupation because of one's skill, training, or other qualification: the ability to sing well.
3. abilities, talents, special skills or aptitudes: Composing music is beyond his abilities.

Content Is Coming!

Howdy.

I've been super sick this summer, so I have done very little writing or blogging here or elsewhere. However, I have some pieces in the pipeline. Upcoming, an essay on languaging disability and interviews with the editors of some recently released anthologies that include my work!

Thanks for sticking around.

-Sharon

A Plagiarised Writer's Response to #PIPA & #SOPA During the #Blackout

Cross-posted at AfterGadget and Occupy at Home 

If you go to Wikipedia today, you will find it blacked out. However, along with the blackout is a way to contact your representative to tell them why you oppose PIPA/SOPA (or to learn more information about these bills, if you're not familiar with them).

I encourage you to make your voice heard. Here is what I wrote to my representative and senators. Feel free to use whatever is relevant or useful to you:

As a writer who has had my work stolen -- shadow companies were selling my articles under their own copyright on Amazon, as well as websites that have stolen my blog content and reprinted it without permission on advertisement-filled pages -- I am very sympathetic to the aims and goals of SOPA and PIPA. In fact, multiple articles were stolen and sold on Amazon from a feminist newspaper I was in by this one company, and the editors and publishers of the magazine had tremendous difficulty getting Amazon.com to stop selling this stolen work.

I wonder how many of my other stories have, or will be, stolen -- particularly because one of the genres I write in is erotica, and that seems to be an especially popular genre to steal and publish under another name. I work very hard on my stories. It's no small feat, because I am severely disabled, and each time I write, it exhausts and sickens me. But I continue because it's my passion and my joy and my job in this life.

I use the internet for everything -- work, social interaction, news, research for work, research on my medical conditions and connections to others with my illnesses, personal study, and more -- everything, really. I am bedbound due to chronic illness so it's my connection to the world outside my bedroom. The idea of what PIPA and SOPA could mean for internet freedom and literacy is chilling to me. I am absolutely opposed to SOPA and PIPA, even with my personal experiences of internet piracy.

Megacompanies like Amazon.com need to be held accountable. They did their best to evade me, making their legal department all-but-unreachable, and then when I threatened them with legal action, they simply took down the pirated article without acknowledging my correspondence or compensating me for my stolen work. The big money-making machines, like Amazon, need to know that the DOJ has them in their sights, that authors need to be respected and protected.

But indiscriminate, sweeping legislation like SOPA or PIPA is not the answer. It throws the baby out with the bath water. It will not stop the internet megacorporations from their sloppy, unethical (and lucrative) practice of ignoring stolen work, but it will seriously damage the free exchange of ideas and information that is the life's blood of the internet. The people of the internet are united in our opposition to SOPA and PIPA. I ask you to listen to your constituents, not corporate interests.

Thank you for your time, for reading, for listening, for following the will of the people.

P.S. If you have tried to email your representative or senator and gotten an error message where their website is supposed to be, that's because so many people have registered their opposition to SOPA/PIPA that we've crashed their sites! Keep it up! You can still contact them on their Facebook pages or via Twitter.

PFAM: Why Do We Write?

Welcome to a whopping big edition of the Patients for a Moment (PFAM) blog carnival! I'm blown away by the response to the topic I proposed: "This is why I write."

In fact, I received so many responses to my call for contributions that I barely had time to write my own post, which could pretty much be the topic of my post: How much I don't write! Instead, in my post (which I just slammed together a couple of hours ago -- enabled by the fact that about half of it is me quoting another blogger!), This Is Why I Write -- For Now, I discuss two responses to my writing that were deeply meaningful for me, and helped me to understand that my writing is still worthwhile, even if I'm not even close to meeting the writing goals I would set for myself, if I could.

In addition to thoughts about my own writing -- which I didn't get much time to express! -- I was inspired to choose this theme by a blog post by Peggy Munson. Her post, When Words Fail, for Her Circle Zine, is the best essay I've read on writing with the kind of disabilities and cognitive impairments she and I both have. It's an excellent piece of writing in its own right, but also, when I read it, I thought, "Yes! This! This is how it is for me!" Here is an excerpt to tantalize you:

I have been losing my cognitive acuity with alarming speed the past couple of years due to my worsening health. It’s the last in a long line of robberies by an illness that makes brains look on SPECT scans like those of AIDS dementia patients. I have written no real creative work since almost dying a couple of years ago (this short piece will take a lot out of me)—as I have been too brain-impaired to rub together words in the magical way that used to happen spontaneously. I’m trying to prevent more dissolution.

I hope you delight in it as much as I did.

Okay, on to the fifteen additional posts I got for this carnival!I loved being introduced to new bloggers I hadn't yet discovered, learning more deeply about the lives of those I knew, and the deep authenticity and desire to meet the challenge head-on in each and ever post.

A word about organization: Usually when I host a blog carnival, I put a lot of time and energy into finding shared themes, grouping them into categories, and other lovely administrativa to make your reading experience smooth and easy to navigate. While there are clearly several themes that arise in almost every post, I just did not have the spoons to be as "detail-oriented" (anal and perfectionistic) as I normally am. There are so many delicious posts, I'm going to be more minimalist and casual today, and let you unravel the threads of shared themes yourself.

So, get out your tray, plate, and forks, and get ready to sample a bit of everything in this all-you-can-read smorgasbord of blogging gals writing about writing!

I'll start with my favorite submission, which ironically is entitled, I stopped writing because. NTE's post at Never that Easy is gorgeous in its honesty, its poetic rhythm, and its personal, universal appeal. She carries this compelling complexity throughout the piece, hurtling toward a conclusion that continues to embrace the contradictions of writing (and life) with chronic illness. It was hard to choose which section to quote, but I chose this one: "I stopped writing because the dark didn't make sense to me, and the light was too bright. Because there was nothing to share when you are both inundated and empty."

I really related to Megan's beautiful post, Why I Write, at Objects in Mirror are Closer than They Appear. The detailed description of all the things her hands used to do really painted an intimate portrait. She starts out saying, "I have a Flannery O'Connor quote in my profile that reads 'I write to discover what I know,'" which led me to think she was writing for herself. But no, she is writing for someone else, which I found very touching. (I'll let you discover who that is.)

Wendy of Picnic With Ants  takes us on a journey through multiple blogs and diagnoses, each of which affected her relationship to writing. "With this blog, I have thrived. I started writing this blog to tell my story, living with chronic illnesses. To get it all out before I exploded. Then I found others who understood what I was going through." I love the honesty of Why Do I Write? PFAM carnival and its deeply felt sentiment. However, my favorite part is the very last sentence! You'll have to read it to find out.

It was a real pleasure to read Selena's post at Oh My Aches and Pains! A Friend Asks: So, Why Do You Write? is visually appealing, fluid and easy to read, and goes into depth on several aspects of why and how she writes, without ever losing the reader. Due to a pain syndrome, Selena uses Dragon NaturallySpeaking to type, which I would never have known, as her post is free of "speakos" (or Dragonisms, as I call them). And I'm tickled by the idea that she started writing as a competition with a friend: "Hence was born the "'Blog a Day in the Month of May' challenge in May of 2009. And the rest, as they say, is history."

For Laurie Edwards of A Chronic Dose, blogging is just one aspect of many in her writer's life. In On Why I Write, she also reveals that writing was a necessary part of coping with life as a sick child and now, as a blogger, she keeps writing about chronic illness as a way to connect with others: "I keep writing this blog because as my own journey has evolved . . . I continue to learn and be inspired by those I find on similar paths, facing similar challenges. . . . I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults." A clear, compelling, and uncluttered read, this post resonated for me on multiple levels.

Leslie of Getting Closer To Myself shares her path of becoming a blogger after having been a writer of many other forms throughout her life. I really enjoyed being with her through these transitions. She started blogging the week after she was diagnosed with rheumatoid arthritis and lupus: "I started writing to the cosmos.  It wasn’t quite an abyss because I imagined that there was at least one person out there reading what I was saying." As with many in our carnival today, blogging soon morphed into something with much greater meaning. Found out what in Why I Write (A Chronic Illness Blog)?

Kathy, The Fibrochondriac, writes of a home-coming of sorts -- to herself and what she feels now is the real reason for her blog, even if not everyone wishes to take this trip with her: "I’m losing subscribers by the dozen. I’m okay with that. I’ve found my passion, my purpose. I’m not going to force anyone to read my blog." Kathy reveals how she arrived here in  Why I write...yes fibromyalgia and Occupy in the same post.

Aviva of Sick Momma and I have something in common: We sometimes use our writing as a way to satisfy our nosiness our curiosity about the details of others' lives. In This Is Why I Write, Aviva describes a now-familiar journey -- from writing as a passion or a job to writing as a way to find community: "But something funny happened along the way, and blogging became more about community than I'd ever imagined." Tight, clean, and well-written, this post's journalistic roots make a complex subject an easy read.

Kelly at Fly With Hope is another of our contributors who has found community through blogging. Writing for my Spirit focuses in on what makes blogging special -- the gift it gives her that other writing does not: "I want to challenge myself and others to think of life with chronic illness in a different way. . . . I write because I want others to know that they are not alone and they do not need to be afraid to speak out about what they are going through or how they feel about it." And yet, even if nobody read her blog, Kelly would continue it! Find out why.

I just love the name of this blog: Lisa Loves to Write. Given this, the conclusion Lisa Tomey draws in her post, Why I Write, is unsurprising. I'll just leave it at that; a short and snappy post should have a concise introduction!

Jamie, the Chronic Migraine Warrior, gives a host of reasons for "Why I write," divided neatly into sections for those of us who find categorization soothing for our scattered brains. I particularly loved this section on writing and disability, because I went through this, too, and I know so many others who have said the same: "I (foolishly) thought that being unable to work would give me the opportunity to read and write more... while that's great in theory, it simply isn't the case. Sure, I have the time to read and write, but I don't have the energy (or cognitive ability)." Say it, sister!

Displaced of Gonna Eat Worms describes her awakening to the fact that she is a writer and that writing is a gift she doesn't want to squander: "I take praise of my writing with grace but also with rebuttal as I really think it is a gift and I have only made a minuscule effort to refine it. I'm just lucky." In Why I write, Displaced goes from there to what she writes (quite a list!) and the many needs writing fulfills.

Elisabeth of Redefining "Good" started writing for the same reason many of us do -- as an extension of her love of reading. Then life's twists and turns brought her from one form to another, but still stumbled with inconsistency until she discovered LiveJournal, which came to serve a very useful purpose indeed: "[LiveJournal] got me in the habit of writing regularly again, even if my only audience was myself. It helped me feel connected and coherent. And, eventually, it helped my doctor identify the beginnings of my illness and diagnose me." The continuation to blogging was not a simple, linear path, and I reveled in Elisabeth's honesty and the conclusions she ultimately draws in  Why Do I Write?  [Access note: There is snow falling on this blog. I found it only mildly distracting because the blog's background is also white, but if you have difficulty with moving graphics on the screen, it's something to be aware of.]

Kat of Join the Club! titled her post, What me a writer?!?! That gives a pretty strong hint that she has mixed feelings about (non-technical) writing. She blogs because there are times she feels "barely human," and "Sometimes I just need to scream at the world."

Last, but far from least, Phylor, of Phylor's Blog: chronic pain, life, and all that,sent me an email with her submission apologizing that her post was late, that maybe it wasn't really on topic, that her title wasn't imaginative enough, reassuring me I didn't have to use her post, etc. Well, I do not accept Phylor's apology. Why should I, when I was pleased to  include her post? In fact, she described the topic as "most appropriate, heart-wrenching, and necessary." I am trying to learn to cut myself some slack in my own life, and I think this would be a good idea for most (all?) of us with chronic illness. So, here is some slack, for Phylor, or any of the other bloggers who may need it: _____________________________________________. Use this space whenever you feel like you need more spaciousness. Moving on. In why i write: pfam blog carnival, Phylor, like so many of the bloggers today, has so many answers to why she writes, but I picked this one: "I guess because I can’t keep all the words, the feelings, the observations, the ponderings, the what ifs, the private inside."

Whew! There it is, folks. Please check out these fabulous posts and give the bloggers some love in their comments sections. I plan to do that, myself, this evening, after a nap! Love, love, love to you all for opening your hearts and sharing your precious words.

P.S. If you enjoyed this, and if you like the topics I pick and my hosting style, you're in luck! I'm hosting the December Disability Blog Carnival at After Gadget! Yes, I seem to be caught in a vortex of endless blog carnivals this autumn. Please pop by After Gadget in the next few days to learn the theme and deadline!

This Is Why I Write -- For Now

You might have noticed that I rarely post at this blog. I'm spending all my "spoons" on training Barnum (my service-dog-in-training), studying and practicing nonviolent communication (NVC) -- including staffing and promoting the NVC line, OccupyVoice, and working on Occupy at Home. All of which leaves little left over for blogging, and nothing for any other type of writing. I already have such limited energy, I am struggling to find balance. I long to find time for "creative writing" or paid writing, but it's not happening. For now.

But, oh, how I love to write. I could -- if I had the time and energy -- write a separate essay every day, for months, about each of the reasons I write. Writing is an essential part of who I am. When I write, I feel the most "me," the most connected to myself, the most alive. Writing and editing have been a source of income and of accomplishment. Writing has been my craft, my spiritual practice, my answer to that most dreaded of questions, "What do you do?"

In the last few years, I have very rarely been able to tap into that creative space, yet I have discovered a powerful reason -- a different kind of connection -- still occurs when I do write. Two similar events inspired me to choose the topic, "This Is Why I Write" for the PFAM blog carnival.

One of the forms of professional writing I have managed to squeeze in this past year is the interview. I enjoy interviewing people. Everyone has a story. Everyone has a unique way of revealing their story. I enjoy learning about and connecting with my subject, trying to bring out some essential truths in their lives in my questions and in my editing. One of several interviews I did this year for a disability-oriented magazine was about an artist with chronic illness. (We'll call her "Amber.") After the piece was published, I sent Amber a copy of her interview.

This is some of Amber's response to me when she received the profile.

Seeing it there, in print, I can't tell you how much that moved me. It's like it put air back in my lungs. . . . I wasn't expecting it to, but it almost felt like an incredible weight was lifted. Oh, I exist. I am a person. I do things. I am not gone. I haven't been totally eclipsed by this yet. . . . It was this quiet, powerful shift inside of me when I saw it. Like, I remember. I remember now.

I was moved to tears by this. I had no idea it would mean that much to her.

A few weeks later, I found out from blogger, Kathy, The Fibrochondriac, that my blogging had made an impact on her life -- that I'd inspired her to get involved in Occupy (long before I, myself, got involved in it, actually). She sent me an email, excerpted below (which she's given her permission for me to post) that totally blew me away, because I never thought of my blogging as particularly meaning much to anyone else but me.

I am really freaking tired right now but I just want to tell you...it is because of you. You are not afraid of nobody (ignore the grammar please). You are committed to making your life work for you. You are also committed to activism. Reading what you write makes me feel brave, like I can do it too. Although sitting outside all day in the cold wind was probably not in my body's best interest, it was definitely in my heart's. For me Occupy means equality. It means by the people for the people and NOT corporations. It means that we do not sideline and shove people into the slums because they are disabled by whatever...illness, lack of education, whatever. That particular list is long and my brain power is short. I'm just saying, you inspired me to be brave. I could have kept sitting at home and whining about things. But I'm healthy enough (I'll pay for it for the next couple days but whatever) to get out there and start organizing people and making things happen. And I may never get out in front of a group of people again, but I did it today and I think I did it pretty damned good. And it's all your fault :)

I told Kathy I was very moved by what she'd said and asked if I could quote her. These are excerpts from her replies. The first was written while she was riding in a car just about to arrive at a protest!

Sharon, you showed me that even stuck in a bed you can be a warrior. :-) I try really hard to channel you sometimes :-) and the lady from Harry's Law (Kathy Bates) because I can watch her be a badass too! And another sick warrior is Jennifer Jaff with Advocacy for Chronically I'll Patients. So you three are my goal. Gotta run!!

Later, Kathy expanded upon her three role models. Having grown up with no role models, she was surprised to meet John, whom she married. He treated her with "basic innate kindness. I finally met a person worth emulating."

After I got forced out of my job . . . I was so brain-fogged! . . . I tried to get on disability. And got turned down. So I tried to hire a lawyer but nobody understood the federal disability system or fibromyalgia. Then I found Jennifer Jaff. She was sick too, but she turned it into something good...free legal advice and assistance for chronically ill people. She worked out of her home so she could accommodate her Crohn's 

Then you came along :-) and you were far more "stuck" than I was, but that wasn't stopping you! You were training your own dog, you were making your life fit you. And then you'd tell a few stories of your life before and I'd get it. Your willingness just to work with what you have. You'd point out the problems (like stupid office policy of doctor not letting [your service dog] in) but then you'd come up with work arounds. YOU MAKE YOUR LIFE WORK!! That was so utterly profound to me. And then when you started your activism posts, yeah baby. Oh yeah! 

Then Occupy came along and that is helping me rise above the days I spend in bed. But since I first got sick, I've done a lot of good things for my health and I'm actually more mobile than I thought I was capable of. And with your stories of activism behind me, I knew I could do this! 

It may seem weird but you had a very profound effect on me. There are people that are sick, but still keep working. They annoy me because I want to be working too. Then there are people that are sick who do nothing but whine all day and it makes me want to slap tape over their mouths. Or glue their fingers together so they can't type. 

Then there's you. You've had you ass handed to you quite a few times by ticks and your health and loss. But you keep finding ways to make it work and to help other people while you're at it. How could you not inspire me to do the same? I just wanted to tell you all this while I had time to focus on you. 

Because the rest of the day...whew! We're hitting the mall tonight and some of us are doing a flash mob inside the mall. Fun times!! And I have to finish getting the newsletter out. Not easy work for me, but somebody has to do it! I haven't figured out what exactly I'm good at, where my groove is, but when I find it...that's where I will focus my energy. Right now it seems to be in organizing things.

Kathy was right -- it did seem a little weird to me, at first! I was just not expecting this outpouring of gratitude and affection. And I tend to be leery of using other people's reactions to my writing as a reason for writing.

In fact, it is a cherished bit of wisdom among artists (actors, writers, painters, or anyone who is creative for the public) that it is dangerous to believe your reviews. It is wise, and helps a writer's stability, to try only to absorb feedback from a trusted source whose sole goal is to help you hone your craft. "Do not take good reviews to heart," the saying goes, "because if you believe what they say about you when they're raving about how wonderful you are, you're also going to believe them when they're raving about how terrible you are."

External measurements of "success," or "talent," or "gift" are dangerous this way. We can fall in love with our image in the water, smiling back at us, and do nothing but beam at ourselves.

Ultimately, what I'm talking about is balance, and that cuts both ways. For the last several years, I have thought pretty meanly of myself. I suffered a great many losses and traumas, and I came to believe others' bad opinions of me along the way. Shame and humiliation are not character-building; they are destructive.

Now I am rebuilding my "me," one brick at a time. Some dog training here (among trainers who are compassionate to both dogs and people), some blogging there (with a readership that is kind), some NVC there (which has helped me more than anything else has to teach me to be compassionate with myself), and ever-so-occasionally, a little creative writing, just to remind myself that the logophile still resides within, no matter how hard she may be for me to access.

Right now, I'm allowing people like Kathy and Amber to hold this space for me, this space of knowing that my writing matters. There's an essential difference, I've realized, between what Kathy and Amber said and between people who say, "Oh, your writing is so great. Why haven't you written a book?" (I'll rant about that another time.) The people who just say, "Oh, you're such a great writer," are -- from an NVC perspective -- judging me. (Judgement in NVC is not defined solely as negative interpretations of a person, but any interpretation of the value of a person.) The people telling me I "should" write a book are (unintentionally) conveying to me that my worth is based on something I do, which is writing. And then the art and craft of that work gets all tangled up in feelings that I have to write, or I'll be worthless. Therein lies the danger.

Amber and Kathy, on the other hand, experienced my writing as a gift. For Amber, the gift was that I wrote about her, and she got to see herself reflected in my heart and mind. For Kathy, the gift was not how I wrote, but what I wrote about -- my life, my day-to-day thoughts, feelings, and doings. The words were not significant. She just saw something about the way I was living my life that triggered ideas and thoughts already available to her about how she wanted to live her life. I feel pretty certain that if she hadn't gotten the ideas from me, she would have found them elsewhere. I was fortunate enough to be credited with being a catalyst.

For now, this is how I will keep writing, because I cannot live up to my own internal critics' ideas of what I want my writing to be and how I want it to feel. I will keep in mind that just the act of writing might relay some useful tidbit to someone else that they will find helpful, that they can put to use in their life. Thus, we are both creating the story. We are both -- we are all -- the writing.

Call for Subs: PFAM Blog Carnival! Writing & Disability

I'm hosting the upcoming edition of the Patients for a Moment (PFAM) blog carnival! I hope you will participate!

(And I'm late in getting this call for subs up. Eek! Life got chaotic, and I lost track of the date.)

This is my second time hosting. My first time hosting PFAM was a couple of months ago, at my other blog, After Gadget.

Since this blog is my writing-related blog, my topic is writing related. When I became disabled by chronic illness in 1995, I decided to try to look at the losses of my job and career and other activities as a way to give me more time to write. That turned out to be less doable than I'd thought, but writing has been a central part of my life, nonetheless. It didn't take me long to discover that many people who've recently acquired an illness or disability also have the "now I can focus more on my writing/painting/photography" response. It got to be sort of a joke in my chronic illness support group that every new member said something along those lines.

Since I've entered the blogosphere I've noticed that there are an awful lot of bloggers and writers with disabilities and chronic illness, and I sometimes wonder why. Am I just more aware of those with disabilities because that's who I'm drawn to? Is this how many of us have found a way to incorporate writing into our lives? Does blogging lend itself particularly to writing about lives with chronic conditions? Is there something about becoming ill that compels many of us to write? Or is it something else?

This is your chance to tell me and the world why you do what you do. The topic is, "This is why I write." I'm eager to read other chronically ill or disabled bloggers' thoughts on being a writer with a disability or chronic condition! Elaboration below (and above) are a jumping-off point. You don't have to answer all these questions, although you can if you like. Mostly, they are prompts to get you going.

So, bloggers, why do you write? Does it add something to your life that nothing else does? What does it mean that you spend your precious spoons on writing? If your disability affects your writing -- your ability to type or find words or meet deadlines, for example -- why do you persist? (And if you like, how do you persist?) If you write other forms in addition to blogs, such as fiction, poetry, creative nonfiction, freelance journalism, etc., what's the driving force? Do you think you'd write/blog more or less if you didn't have a chronic condition or disability?

I'm extending the deadline for submissions is Monday, December 5, by midnight of whatever time zone you're in (-ish) because I'm late in getting this announcement up. I also know it can be hard to meet deadlines when you're ill. (Take me as an example!) Therefore, if you are writing something for the carnival and need a little extra time, please contact me, and we'll try to work something out so I can squeeze you in.

The blog will go up Wednesday, December 7.

Of course, it's lovely if you write something new just for this edition of PFAM, but if you find yourself running out of time, and you have a post already up that answers this question, please send it along. To submit, please comment on this post with the following information:

• Your name (as you'd like it to appear in the post).
• Your blog's name.
• Your post's title.
• Your post's URL.

I really look forward to reading your posts!

I encourage you to try to make your posts for this edition of PFAM as accessible as possible to people with a wide range of disabilities, including putting descriptive alt tags on any photos, transcriptions for any videos, and disabling word verification for comments. This will not only enable more people to enjoy your work and to experience greater ease in navigating the web, but it may bring you new readers and possibly followers and subscribers! Find out details about steps you can take to make your blog more accessible (many of which are very easy) on the Assistance Dog Blog Carnival page. Thank you for your consideration!

Please also spread the word on Twitter, Facebook, on your blog, and everywhere else! Thanks so much!