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Weeknotes, 20/07/14

Term is over! On Monday, there were exams. On Tuesday, the end of year awards evening. There were course videos (for literacy, numeracy, ESOL, and Step by Step) before each class was called up. I was itching to go get my laptop & cables & projection software to tart it up a bit; habits die hard but that’s not what it was about. It was amazing to hear students speaking about their experiences + their goals, especially in such a celebratory environment. No doubt of their tenacity. Certificates were given out by the Lord-Lieutenant for East Sussex.

“Her Majesty’s Lord-Lieutenants are the representatives of the Crown for each county in the United Kingdom.

Men or women of all backgrounds, they are appointed by The Queen on the advice of the Prime Minister.

Lord-Lieutenants were originally appointed in Henry VIII’s reign to take over the military duties of the Sheriff and control the military forces of the Crown.

In 1662 they were given entire control of the militia, but the Forces Act of 1871 transferred this function back to the Crown.

Lord-Lieutenants are responsible for the organisation of all official Royal visits to their county.

On the day of an engagement they escort the Royal visitor around the different locations – not simply The Queen and The Duke of Edinburgh, but any member of the Royal Family.

Lord-Lieutenants also carry out other duties in their county, such as the presentation of decorations (where the recipient is unable to attend an Investiture), The Queen’s Awards for Export and Technology, and Queen’s Scout and Queen’s Guide Awards.

Lord-Lieutenants are also responsible for ensuring that The Queen’s Private Office is kept informed about local issues relating to their area, particularly when a Royal visit is being planned.”

We were asked to stand for his entrance, although that was the most formal bit. It was a bit weird and very British, like all the pomp and circumstance stuff that happens at citizenship ceremonies and seems particularly meaningful to people who’ve migrated. In previous years it has been the city mayor or another public official. Someone to do with governance, for community + establishment acknowledgement. (Most) people dressed up. Everyone was smiling.

It’s a good culmination for an academic year, especially after the anticlimax of exams whose results you won’t know for weeks, if not months. One of the biggest takeaways from the theatre programme is that endings need to be marked by some kind of ritual or performance, and a presentation celebration certainly qualifies. Performances etc are an automated culmination (you don’t need an afterparty to wind up a gig) but things have to be built to congratulate long-term showing up for private achievements. Theoretical congratulations aren’t enough for things with so many people involved. On a bit of a comedown, slightly sad not to have a class to work tomorrow.

My ~gift~ to myself, in that time, is to finish a bunch of projects that have been languishing (partly spoons, partly my easy distractability + tendency to take on ten billion projects at once) and to pay off all of my debt. My Prince’s Trust business loan has less than £200 outstanding.

Remember when I spoke at Brighton Pecha Kucha during the digital festival a couple of years ago? Me neither, nearly. But! I’ve almost finished forming those seeds into a book. It’s going to end up Kindle Single (5,000 – 30,000 words) to novella (17,500 – 40,000 words) length cos there’s no point making it any longer for the sake of it. I’ve been playing with formatting but that will be comparatively simple after the slog of the last 22 months. It’ll be excellent to have it done. It’s felt like I needed to push all of my thoughts together then get them out of my brain (partly to interrogate them in daylight). Soon there’ll be room for me to move on to a next stage of thinking/feeling/doing with a clean page.

Weekend Links, 07/07/14: Ebooks, editors + “eyeball-hours”

“Selling Themselves Down The River” by Andrew Hickey.

“There is a group of people, mostly former mid-list thriller authors who’ve been published by the major publishing companies and built up a small fanbase, who have set themselves up as self-publishing gurus. They write short ebooks about how to make a million dollars a month on Amazon, constantly blog about the evils of the big publishers, and generally act as propagandists.

Several of the usual suspects recently released a “petition”, which I won’t link to but which has had media attention and received thousands of signatures, about the ongoing dispute between Hachette and Amazon.

Now, I don’t have any time for either party in that dispute, though I end up giving both a substantial fraction of my income. Hachette’s problem is largely of their own making — by enforcing DRM on their books, they’ve helped cement Amazon’s near-monopoly position — and when multi-billion-dollar multinationals fight I tend to want both to lose.”

“Amazon, Hachette, Publishing, Etc — It’s Not a Football Game, People” by John Scalzi.

“Publishing is a business. As a writer, you are enaging in business with others, sometimes including large corporations. It’s not a team sport. It’s not an arena where there are “sides.” There’s no “either/or” choice one has to make, either with the businesses one works with or how one publishes one’s work. Anyone who simplifies it down to that sort of construct either doesn’t understand the business or is actively disingenuous, and isn’t doing you any favors regardless. The “side” you should be on is your own (and, if you choose, that of other authors).

These businesses and corporations are not your friends. They will seek to extract the maximum benefit from you that they can, and from others with whom they engage in business, consistent with their current set of business goals. This does not make them evil — it makes them business entities (they might also be evil, or might not be, but that’s a different thing). If you’re treating these businesses as friends, you’re likely to get screwed.

(And for God’s sake, don’t confuse being friends with people at those businesses with being friends with the business. I have very good friends at Tor. It didn’t stop me from having a substantial business disagreement with the company. Businesses aren’t your friends, even when they employ friends.)”

“Cover girls (How lipstick, bathing suits, and naked backs discredit women’s fiction)” by Eugenia Williamson.

“In recent years, many of the people on book covers have been women without faces. So prevalent is this visual cliché that the publishing industry has cycled through at least two well-documented iterations. The first, the Headless Woman, features some poor thing cut off above the neck, like the swimsuit-clad beachgoer on Alice Munro’s story collection “The View from Castle Rock.” The website Goodreads’s Headless Women page has 416 entries. Last year, the Headless Woman was supplanted by the Sexy Back, in which a woman is shown from behind, often gazing out over a vista.”

“A book too far” on Karen Dawisha‘s work.

“Karen Dawisha is a distinguished Russia expert, who for the past few years has been working on a book about the origins of modern Russian corruption, focussing particularly on the links between the ex-KGB, business and organised crime in St Petersburg in the early 1990s. I’ve read the manuscript (provisionally sub-titled: “How, why and when did Putin decide to build a Kleptocratic and Authoritarian Regime in Russia and what is its Future?” Without giving away the specific sizzling scoops it contains, I can say I found it admirable: lucid, incisive and devastating. In the light of the news from Ukraine, and the resulting sanctions recently imposed on some of what America now officially calls Vladimir Putin’s “cronies” (details here), it could hardly be more timely and important.

But Mrs Dawisha’s publisher has got cold feet. She has just received this letter (posted in full below) from Cambridge University Press, saying that the legal risk of publishing the book is too great…

She stresses that she is not angry with CUP, but with the climate in Britain which allows what she calls “pre-emptive bookburning”.”

“Two Damn Books: How I Got Here And Where I Want To Go” by Roxane Gay.

“I had no idea what to expect when working with bigger publishers though I heard the horror stories so I suppose I expected very little — no money for publicity, editors who don’t edit, good books languishing without the publisher support they so very much need and deserve. I’m also a writer of color and I was told my prospects as one were especially grim because publishers don’t know how to market us and readers don’t want to read our stories.

I did not know publishing moves glacially. When I eventually looked over each contract, I offered up thanks and praise for my agent. I know how to read but I didn’t understand much of what I saw in those papers. There were lots of arcane words and numbers and basically, I understood I would receive a rather modest sum of money in exchange for the publication of my books. The first and only dream dashed was the one where I could quit my job to write full time.”

“How to Publish Writers of Color: Some Basic Steps for White Folks In the Industry” by Sarah McCarry.

“Someday I’m going to write the Essay to End Them All on why I don’t work in traditional publishing anymore and what I think of the industry’s institutionalized racism, but today is not that day (oh, honestly, just buy me a couple of whiskeys and I’ll yell it at you). But there has been a lot of hand-wringing on the internet of late about Diversity and Why We Don’t Have It, prompting today’s Twitter rampage, and look, folks, the answer is not because people of color can’t write. I run a small press, Guillotine, out of my apartment; my list is currently nearly 50% writers of color, and will likely be more like 80% writers of color next year. Nearly all my chapbooks sell out and the press is 100% self-sustaining. Commercial publishing, if I can do it, so can you.

I wrote 99% of this on the train just now in a state of total rage, so please excuse anything important I may have left out. This is an ongoing conversation. And again, again, a hundred times again: I am not saying anything here that has not been said better for decades by writers of color.”

∞ “Esoteric Publishers, Crowley, and the ‘New Right’” by Jason Pitzl-Waters.

“Amazingly, the “we’ll let you live in peace apart from us come the revolution” defense seems to often work. Allowing views that would get them painted as neo-fascists to get lost in a constructed apolitical fog. However, any direct contact with self-proclaimed National Anarchists makes plain what they are, and apologists end up having to twist themselves into pretzels in order to insulate figures like Southgate from the odious effects of their pseudo-intellectual rhetoric.

I don’t think there should be a “blacklist” for those duped into thinking Black Front Press was truly apolitical in orientation, but once enlightened, it will become increasingly hard to erect a firewall between Southgate’s publishing arm and the views he and his followers espouse. Just because this book on Crowley avoided becoming a pamphlet for neo-fascist views doesn’t mean the publishing house that produced it should be given a free pass. Ultimately, there’s an expectation that intelligent people will consider who is funding and distributing a project. If your work is helping to bolster the image of a company that endorses the philosophy of the National Anarchists, if your work helps these groups further insinuate themselves within Pagan and esoteric communities, then the fig leaf of apoliticism must be challenged.”

“Neil Gaiman: “I’m obviously pissed at Amazon””, an interview with Neil Gaiman by Daniel D’Addario.

“”It’s sort of weird because the “Chu” No. 1 began with me being in China. I was talking to my Chinese publisher, and I said, “Guys, explain something to me that I do not understand. All of my adult books are available in China in translation. I’m a very popular author in China. I’ve won all these awards for you guys, I’ve got foreign author of the year twice” — really cool stuff. “And yet my children’s picture books … are only available in Taiwan and Hong Kong, they’re not available on the Chinese mainland. Explain that to me.”

And he said, “Oh, that’s very simple. Your children’s books are not published in mainland China because they show children as being smarter than their parents. They show a lack of reverence toward parents as the wisest and most important people in their family units. They show a lack of reverence for authority. And in your books, Neil, children do terrible things and get away with them. So we can’t publish them in China.”””

“A footnote about the publishing industry” by Charles Stross.

“But it’s still a more or less global zero sum game (competing for readers eyeball-hours). And because the rate of individual production is relatively low and the product is still produced artisanally by cottage industries, product lead time is measured in years, time to achieve net positive revenue is also measured in years, and it’s important to keep the back list on tap because it can take decades to grow an author’s career. Stephen King was an overnight success with “Carrie” after a decade of learning to write, but Terry Pratchett took about 15 years to finally break big. J. K. Rowling took 3 books to really get rolling, and she grew eye-wateringly rapidly by industry standards. And some authors are slow-burn successes: my big breakthrough book was my tenth novel in print (“Halting State”). J. R. R. Tolkien’s Lord of the Rings was in print for a decade or more before it really took off in the 1960s. If you practice ruthless commercial Darwinism, weeding out any hopeful mutants that aren’t immediately successful, you will miss out on a lot of huge opportunities.

So reforming the publishing industry is a very non-trivial undertaking.”

“Kickstarter Before Kickstarter” by Justin Kazmark.

“In 1713, Alexander Pope set out to translate 15,693 lines of ancient Greek poetry into English. It took five long years to get the six volumes right, but the result was worth the wait: a translation of Homer’s Iliad that endures to this day. How did Pope go about getting this project off the ground? Turns out he kind of Kickstarted it.

A year later, Pope crafted his pitch:

“This Work shall be printed in six Volumes in Quarto, on the finest Paper, and on a letter new Cast on purpose; with Ornaments and initial Letters engraven on Copper,” he wrote.

In exchange for a shout-out in the acknowledgements, an early edition of the book, and the delight of helping to bring a new creative work into the world, 750 subscribers pledged two gold guineas to support Pope’s effort before he put pen to paper. They were listed in an early edition of the book…”

“THE CONSOLATION PRIZE: EMILY GOULD”, an interview with Emily Gould by Mark Doten.

“The two opposed trends are “longform,” which I sometimes think of as “wrongform” because there’s such obvious fetishization of length for length’s sake, and so few publishers have the editorial resources or time to edit 5,000 words into the kind of shape they should be in to in order to deserve to run at 5,000 words. And then there is Twitter which I love, which I think is such a creative, exciting medium, and which valorizes epigrammatic writing and brevity.

The second, related, infinitely more important thing is that no one has yet come up with a sustainable, ethical way to monetize content that doesn’t pander to the absolute lowest common denominator. If you’re leveraging ads against eyeballs or harvesting data in order to sustain your editorial vision, that’s shaping your editorial vision somewhat, in a different way than it historically did for print magazines.”

“The Death of the Boozy Lunch?” by TheWorkshyFop.

“Jess Richards has been in a similar situation since she began writing full time: ‘At this point in time, I don’t know how to live, where to live, how to support myself financially… so I have to figure out all of those things. Because I don’t have any financial security, I’m trying to live as cheaply as possible for now. Though there’s still adjustments needed – I spend more on bags of coffee and pouches of tobacco than food. Which isn’t quite right, is it? At the moment, I’m at the tail end of a ‘housesitting’ assignment, which in reality is ‘caretaking’ five rural holiday cottages through the winter, in lieu of paying rent. I’ve been trying (in my mind) to be ‘a caretaker who doesn’t care’, so I can prioritise writing and not get too knackered. But I can’t fix doorsteps and cracks in walls and then not love them a little bit. And there’s always something here that breaks; it’s winter, wild weather and old cottages in an exposed landscape. Everything could possibly go wrong. And sometimes does. At times I’ve hated it here. But more often than that, I’ve loved it.

The down side is that it’s hard to type when my fingers are numb with cold. And electrical wires breaking during gales, cluster fly and mouse invasions and making sure the rare visitors have clean and ironed bed linen all have to take priority over writing. I’m learning new things, which must only be good, as I’ll probably write about them later. I now know all about silicone guns. (It was flooding. A lot.) Writing’s about building a whole world sometimes. Mending broken things is a different thing entirely. Each is important. But it doesn’t start raining INDOORS if I don’t write something, whereas if the latest gale’s brought slates down… I’m not sure what’s next yet in terms of where to live. Perhaps I’ll go exploring and find a clearing in the middle of a wood that doesn’t technically belong to anyone. Make a secret room out of old tyres and pallets. The only thing that’s stopping me doing that at the moment is the fact that a laptop needs electricity…’”


“Being a creative operating in public, putting your work out for sale and discussion, is a super-stressful thing at times. You spend weeks, months, or often years bleeding all over the page, crafting sentences, fabricating fictional real people out of your brain-meat and then torturing them for hours on end, and then you send the whole fragile ontological baby out to learn how to drift with a publisher so it can go fight for great justice, entertainment, and enrichment.

Querying agents is rough. Being on submission is rough. Running yourself ragged with a blog tour is exhausting. Sitting at a signing table for hours with the hope that someone, anyone will come up to see you and not to ask when Big Name Author will be back at their table.

It’s normal, I think, for an otherwise emotionally stable person to be a giant fucking wreck when dealing with their creative career. And the thing about that is, others have been where you are. Many of us have walked the same or similar paths, and can relate. That’s why it’s so important to make friends in your field, not just to help you better your work, connect with markets, or to have someone to sit next to at a mass signing. It’s also to have a support network for group therapy when shit goes down and your Publisher Jaeger gets hit by an EMP when a major retailer pulls your buy buttons or refuses to stock your book.”

“Jason Arnopp interviews JMR Higgs” (Jason Arnopp & John Higgs).

“‘JMR Higgs’ is the indie novelist side of me, whereas ‘John Higgs’ is the traditionally published non-fiction author. The KLF and 20th Century will both come out properly on Orion as ‘John Higgs’, like the Timothy Leary biography. Those books are the result of an awful lot of thought, research and work and a great deal of concern for the reader and the bookseller and the publisher has gone into them. They should make sense to the wide world, basically. JMR Higgs books, on the other end, are the product of a dialogue between me and my subconscious and they are under no pressure to please anyone other than me, myself and I. So when they do find themselves chiming with others, that’s a real delight.

I can’t recommend having a foot in both camps enough, its keeps your non-fiction original and your fiction believable. It’s a bit like a band going between tour and studio, tour and studio. Also the subjects of the non-fiction act as a flag to attract people who might be on your wavelength and persuade them that maybe it’s worth risking the fiction.”

Site Spotlight: Never Say Never to Your Traveling Self

“I am HSofía, a handle I started using a few years ago in part because I got tired of seeing my first name misspelled or mistyped all over the Internet. If you know my first name, and can spell it correctly, you are free to use it here.

If you want to know about me, it’s best to read the blog, but I can be longwinded, so I totally see why these About pages are necessary. (I click on them, too.) To run through all the identity stuff real quick: I am a Black Latina woman born and raised in the USA to Muslim parents. I am not Muslim anymore. In fact, I’m an atheist (for all intents and purposes) these days, and also a Unitarian Universalist (currently unchurched). I live in Seattle and I love it here. I’m originally from the East Coast.

I’m married – despite being a real, live Black Woman (alert the media!). My husband and I made a curious little child whom I will refer to as Kidlet, in what is probably a naive (and vain) effort to protect her anonymity should Google or the Internet still exist by the time she cares.

My days are spent running things in the house, raising and unschooling Kidlet, and maintaining my mental equilibrium through city-gazing, socializing, and reading. I like to write, I write a lot. I want to write more! Writing brings me joy. I row crew several days a week on Seattle’s Lake Union, and travel when I can. Several years ago I learned I have ADD something fierce, but am married to a person who doesn’t think ADD is real thing, so that’s interesting. I consider myself a life learner, and was homeschooled and unschooled for part of my childhood.”

Never Say Never to Your Traveling Self

Weekend Links, 22/06/14: Exoskeletons, professional experts + bogus expectations

“Bringing hope through technobabble” by Craig Wallace.

“Articles like this – and there is around one a day – reflect the media’s idea that we’re all sitting around waiting for a miraculous piece of kit that will re-assemble us people with disabilities into impersonations of the real article.

They are a 21st century incarnation of faith healing, with the same premise – that we’re all waiting to be cured and sprinkled with holy water, only this time swimming with nano particles.

“Opinion: Why the obsession with walking?” by Red Nicholson.

“These are all real headlines from the last week:

“Exoskeleton could make paralyzed walk again”
“Robot skeleton helps wheelchair-users walk again”
“Wheelchair-Bound Woman Walks Again With a 3D Printed Exoskeleton”


You’d be forgiven for thinking, given the headlines, that as wheelchair users, our entirely lives are spent waiting for the day when someone builds us an ugly, cumbersome, expensive, alpha-version robot, pats us on the head and says ‘There ya go! Now you can walk!’.

The frenzy around exoskeletons reached fever pitch this week when it was announced that “A Paralyzed Teen Will Kick The First World Cup Ball Thanks To A Robotic Exoskeleton” (again, their words, not mine). Good lord.

Believe me when I say this: my wheelchair is a very capable tool and to be honest, the last thing I want is to be strapped to a District 9-esque robot and become a puppet in some corporation’s half-baked execution of an obsession with making the non-walkers walk again.

Because the trouble with this narrative, if it wasn’t already obvious, is that the journalists who write these stories are unwittingly invalidating a unique way of life for millions of people around the globe who are really happy with their wheelchairs.”

“The complex issue of looking like a fake when I get up and walk” by Steven Sumpter.

“Unfortunately what other people think of us is something that keeps many people from accepting that they need help. I myself delayed using a wheelchair for a year or more after I really needed one because I was scared of looking different, scared of being accused of using it only to get sympathy or benefits. In delaying my use of it I no doubt subjected myself more pain and more time stuck in bed recovering than I would otherwise have endured, and prevented myself from doing as much as I might have done.

The problem of being thought of as a fake when standing up from a scooter or wheelchair is a particularly pervasive one. The common assumption amongst the general public is that people are “wheelchair bound” or “confined” to a wheelchair because they cannot walk. Full stop. Of course there are people who cannot walk at all but it is usually not the case.”

“A new definition of being able” by nihlaeth.

“Last week I’ve had a change of staff, and that triggered a lot of resistance. Resulting in me playing tough and doing a lot more than I should, not asking for assistance where I used to. With every new staff member I have to explain why I need help, why I *can* make a transfer but still need a patient lift when I take a shower. Or why I can move just fine but can’t put on my own shirt without help. I always feel like I have to defend myself, like it’s an accusation. So last Thursday, when I had to explain it all over again, I told her that I *can* do all those things, but that I had to pay a price for it. And I showed her that my wrist was dislocated because of the transfer I just made. And then she said the most wonderful thing. She said: “but if your joints dislocate when you do something, that means you can’t do it right?” And she was so right…

I’ve been living with a definition of being able that implies no matter the cost. Of course I can do a lot if you don’t hold the damage it does into account. In my head, pain is never a good reason not to do something. Nor is a dislocated joint. And to some level, that is true. If I would stop doing everything that increased pain or accounted for luxations, I wouldn’t be able to do anything at all. Here it is, I wouldn’t be able. But right now, I damage my body doing things I don’t absolutely have to do.”

“Pretty Ramp Machine”, about Sara Hendren‘s work, by Tim Maly.

“She explains that in disability studies, there is a growing distinction between the medical model of disability and the social model. In the medical model, people with atypical bodies are seen as being impaired. In the social model, the problem isn’t with the bodies, but with the environment that was built around them.

After all, the environment we live in didn’t just leap out of the ground from whole cloth. Cities were designed and then built a certain way; they could have been built differently. In the social model, “people are disabled, but by the built environment, schools, transportation, economic structures having evolved to offer only the rather narrow goods that a late capitalist culture presumes,” says Hendren. “So we nurture some bodies, and we tolerate others.” If stairs were 5′ tall, just about everyone on earth would be disabled.”

“We are more than the sum of our genes” by Stella Young.

“A few years ago I was approached by a nervous looking woman on a tram on my way home from work. “Excuse me,” she said. “Do you have Osteogenesis Imperfecta?” With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it’s because they know someone else with it. So I was surprised by her next line. “I was pregnant with a baby with OI and I had a termination.” I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn’t quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, “I made the right decision.” Then she got off the tram.

I thought about this woman for days. Indeed, I’ve thought about her many times in the years since we spoke. As challenging as I found my interaction with her, I have no doubt that she was much more confronted by our meeting. I’m confident that the picture she’d had of a person with OI didn’t look like me. It didn’t look like a young professional woman on a commute home from work. I strongly suspect it looked much more like the ones I’ve seen in medical textbooks from the 1940s. Despite knowing a number of really fantastic people with OI who lead full and productive lives myself, I bet this woman hadn’t been introduced to any of them. Her view of the condition was more likely shaped by what she’d been told by medical professionals and, perhaps more worryingly, the internet.

And herein lies the problem. What a doctor, even one who specialises in my condition, will tell you about my life will paint a vastly different picture to the one I’ll give you. The information given to families is generally given by medical professionals who may know the pathology of certain conditions inside and out, but it doesn’t mean they know what it’s like to live with these conditions, or what it’s like for our families.”


“Medicines order Wolf’s body around, and then his internal directives are changed whenever some number cruncher at an insurance company forces his doctors to compromise treatment. Therapists tell him how to think and behave, what his values are (for instance, he should desire independence). That’s not a personality; that’s a chart. To be “independent” on command is to be utterly dependent on others’ ideas of self.

Everyone occupies a place in Wolf’s head but Wolf. Even the nonprofessionals—myself, his aides, other relatives, the bus driver, other kids—pile on, reminding him of his “goals” and the many ways he is not meeting them. We define what growing up means for him—“doing what you’re supposed to do” (what we tell you to do). We even think it’s our business to tell him how to develop into a man, a space that for everyone else is considered personal and private. Because Wolf’s hormones and executive thinking are delayed, his social skills immature, his body still childish, clumsy, disoriented, and limp, and his disposition passive and receptive, we all live under the impression that his being is an open topic of discussion.”

∞ “Fifty shades of “no”” by Roia Rafieyan.

“As I was pondering these questions, yet again, this morning, I realized, not only is this the usual litany I go through when a client chooses to not come to music therapy on a given day, but my confusion- my wondering what happened, did I do something wrong, will this person leave- probably very much mirrors the feelings my clients have had with regard to their families placing them in an institution.

Perhaps (along with “no”) I was “hearing” his (and many of my clients’) experience of ambiguous loss, which is a loss that doesn’t have clear closure and around which there are questions and a great deal of uncertainty. It’s often thought of in terms of families’ feelings regarding a child who is disabled or mentally ill or a parent or spouse who has Alzheimer’s (for example), but there is little, if anything, written about the experience of the person whose family sees them as “gone” or “lost” to them because of their disability.”

“The Experience of Disability: Change of Identity” by Gary Karp.

“What’s the problem with passing? After all, the disability movement is working hard for inclusion in the society and for removing barriers to the ability to function as independently and fully as possible. However, passing is not about interacting in the world, being involved with able-bodied people, having a non-disability-related career, or dancing at your cousin’s wedding. If you can be an auto mechanic or a dance instructor because you found a way to adapt to the task and you have some real expertise to offer, what could be wrong with that?

Passing is crossing some line where the acting as if you are not disabled causes a problem. For example, perhaps you resist using an adaptive device necessary for your safety. Perhaps you are a quadriplegic with use of your arms, but you exhaust yourself using a manual chair because you resist the image of being a person using a power wheelchair. There is a borderline between challenging yourself within reasonable boundaries and acting against your self-interest because you don’t want to define yourself as a person with a disability.”

∞ “The Paralyzed Bride Draws My Ire” by William Peace.

“Those with a disability that frame their existence as a tragedy are lauded. I, on the other hand, am dismissed as a crank–a bitter man miserable about his lot in life. I find this sad and deeply problematics. I want to be an agent for social change but mainstream America is not buying what I am selling. As a result, I feel a major disconnect between Friedman’s life and mine. After I was paralyzed it did not take me long to realize that disability is primarily a social disease. Robert Murphy wrote this in 1987. I was relatively new to paralysis and Murphy blew my mind. In the Body Silent he articulated what I had been feeling for almost a decade. I was the same person I was before I was paralyzed but I sure as hell was not being treated with anything close to the respect I once thoughtlessly enjoyed. So I read Friedman and I am mystified. Does she and her type, recent post SCI that cannot envision anything beyond a medical model of disability, really individualize her paralysis? Do 99% of her peers really want a cure–a cure now god damn it? I find it impossible not to question why, to quote Friedman, “there are so many stories of wheelchair users overcoming the odds”. Exactly what is being overcome? I learned long ago the physical aspect of paralysis required out of the box thinking. With a little thought a paralyzed person can avoid the vast majority of complications associated with SCI. Evolutionary theorists call this human adaptation and we humans have been adapting for millions of years. The so called overcoming involves needless social barriers. A point missed by far too many.”

Weeknotes, 22/06/14

Classwork this week was more on future tenses. Hearing people talking about their possible futures totally fascinates me. Currently, most of my thoughts are very future perfect: by this time next year I will have done a, b, c; gone to d, e, f; finished x, y, z. I’ve always been goal and future oriented so unexpected reminiscing this week has been weird.

A friend from that I knew from school (baby groups onwards) got in touch, and it’s both stirred up a bunch of bizarre teenage stuff & got me thinking about everything that’s happened in the decade since we were both a regular part of common lives. It’s a nice thing, it just took me by surprise (as has the extraneous reaction: a temporary shift from competent adult to angsty vulnerability). Instant snap to the worst parts of being that age.

I’m only in touch with one (excellent) person from my entire schooling, and that’s someone who left at a similar time to me. Everyone has baggage from school right? It’s not special. It wasn’t that I made a point of burning bridges, and more that I hadn’t realised I had crossed anything until it was too weird & loaded to look back.

“Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious… Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it.”

- “Illness as Metaphor and AIDS and Its Metaphors”

I didn’t know how to be around people whose lives seemed to be continuing fine, and didn’t know how to articulate what I needed (or what that even was). I conflated my legitimate disenchantment/ alienation/ whatever with politics & structures with everything else. Frankly, teenagers were much nicer than the legally responsible adults but it was unconsciously easier to group everyone under “people” than muddle that one out, especially when I obviously wasn’t well. Blah blah reasons for being horribly antisocial blah.

Anyway, it’s lovely & I’m excited to catch up. Otherwise? I’ve been reading (finally finished the Bridge trilogy!), gardening, and revisiting design assignments. I still want to focus on improving my sketching and physical prototyping skills, although encouragingly they’re not as bad as I’d remembered. I’ve started “Citizen Designer”, and am looking forward to considering design theory & manufacturing again in October with the OU. These are new course versions, so it’ll be interesting to see how the structure and contents have changed. I didn’t realise until today that it was the solstice but have felt unusually aware of the seasons shifting. I’m not sure if more gets done in summer or it just deceptively feels that way. Regardless, it’s satisfying.