Category Archives: recommended reading

Recommended Reading for 24 December, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

The Broken of Britain: The GP’s Story by Dr Jest

So there you have it. Neither Pete nor Dud would have chosen to be where they are now, and neither has asked not to work when they were capable. Indeed both have rather struggled on when reason would have suggested they ought not. And I could name you a dozen others in a similar position. All present talk of making it more profitable to work than rely on benefit may sound very noble and high minded in the marbled halls of power, where hard graft means having a lot to read and a few late meetings to go to. It completely misses the enormous efforts made by the likes of Pete and Dud to keep going against the odds, and any move to impoverish them is little short of scandalous and should be relentlessly pointed out for the evil narrow minded bigotry it is.

Sarah at Cat in a Dog’s World: PWD and TSA

From information I’d heard from TSA administrators, I thought that the body scanners would reducethe need for physical pat-downs. Little did I know that TSA would use the new technology as an excuse to conduct more invasive pat-downs! It is obscene, especially when one considers that many people with disabilities don’t have any “choice” at all. If someone is unable to stand independently for ten seconds with their arms up, or if one wears any number of medical devices or prostheses…there is no “choice.” (And no, for many people, “don’t fly” is not a realistic choice.) There is, additionally, reason for concern about the radiation from the body scanners, particularly for cancer survivors and people who have a genetic predisposition to cancer. It is now pretty clear that body scanners, far from being a panacea, are making things worse. And people with disabilities are being affected disproportionately.

At Spilt Milk: Thanks for your help, doctor.

Make no mistake: I know that this only happened to me because I am fat. If I were a thin person and I walked through his door with the symptoms I described, he would have been forced to dig deeper. To ask me more questions, to hopefully come up with a wider range of options. Maybe run more tests.

United States: Megan Cottrell at ChicagoNow: Got a disability? You’ll see the difference in your paycheck

A lot of people might assume that if you have a disability, you might not make as much money as someone without a disability. But how much less? How hard is it for people with disabilities in Illinois to get by compared to their neighbors?

India: An unnamed special correspondent at The Hindu: Social barriers keep the disabled away from workforce:

Persons with disabilities are the last identity group to enter the workforce, not because their disability comes in the way of their functioning, but because of social and practical barriers that prevent them from joining work, a study on the ‘Employment Rights of Disabled Women in India’ carried out by the Society for Disability and Rehabilitation of the National Commission for Women (NCW) has said.

Guillermo Contreras at Chron.com: State sued over care for disabled Texans

The federal lawsuit, filed Monday in San Antonio, alleges the state isn’t providing some mentally and physically disabled Texans the opportunity to move into community-based settings, which advocates say are less restrictive and more rehabilitative than nursing homes.

Lastly, here’s a transcript of a story on Australia’s 7.30 Report program called Setting Sail:

Known as the ‘Everest of sailing’ the Sydney to Hobart race challenges the most seasoned of yachtsmen on what can be a treacherous ocean voyage.

Most of the focus is on the big maxi-yachts competing for line honours. But a unique crew of blind and deaf sailors is also commanding attention.

The charity organisation, Sailors With Disabilities, has been gifted a half-million dollar fast yacht, making them eligible for the first time in the prestigious Rolex Cup.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Recommended Reading for Thursday

Exciting Laptop update: I dropped it off at the repair place today. I will likely not get it back till after the holiday. Picture my face of woe. Woe. Lucky I can at least borrow Don’s laptop to check email and play Farmville. Right now I’m at my library, which closes at the horribly-early hour of 6 p.m. (Usually it closes at midnight.)

Yay! The newest Disability Blog Carnival is up at Rolling Around in my Head:Long Nights: Disability Blog Carnival!

We’ve all had long dark nights. We’ve all learned, to greater and lesser degrees how to survive them. This Disability Blog Carnival comes on the Winter Solstice, the longest night of the year in the Northern Hemisphere. One can forget that in another part of the world, it is the day with most light. There is always balance. The submissions to the Carnival speak of strategies rather than solutions, realizations rather than remedies. I think that’s what makes them so compelling. I wrote my post the other day and realized how deep and how difficult it was to write about darkness. I applaud all who submitted and thank them for the many times I was moved, to tears, to thought and, perhaps even, to action.

The next Disability Blog Carnival will be hosted by Butterfly Dreams

he theme I have chosen is LET YOUR FREAK FLAG FLY, taken from the title of a song in one of the Shrek movies, and one of my favorite songs of all time. Write about a time when you openly and proudly identified as a person with a disabilty, or, if you’re a non-disabled ally, write about a time when you were proud to stand by us. Or….you could make it into a musing on the word “freak” itself, and related words. Do they help us? Hurt us? Is it wrong to call ourselves freaks, spazzes, and gimps? Or is it empowering? Or……something else!! I’m flexible – as long as you can justify it fitting the theme, I’m good.

Noelle Cigarroa Bell at Deaf Echo: Why I Almost Didn’t Sign The Dailykos Petition

I was reluctant to sign the Dailykos petition in support of Netflix and asking the FCC to reign in Comcast’s abuse of corporate power. Why was I reluctant to do so? Because of the history of Netflix’s hostile business practices towards the deaf community, in refusing to caption streaming videos. Dana Mulvany, a consumer advocate, explains the history between Netflix and the deaf community, which I am a part of:

Yet virtually all new DVDs and TV programs have captions or subtitles. Why hasn’t Netflix figured out how to repurpose the captions and subtitles from DVDs more quickly for online streaming? Hulu.com does this with a very short turn around period without even charging viewers. Netflix has dragged its feet about doing this even when it’s raking in millions of dollars from its subscribers. The problem seems to be one of attitude and will, not resources.

Pipe Cleaner Dreams: Slip Sliding Away

I need your help. This is the first year that we have had our wheelchair ramp and really needed to use it. It is Ronnie’s only access into the house.

Last week, we had our first snow. I was dreading it – not because I don’t like snow – I really love snow – but I knew that the ramp was going to be an issue. And sure enough, it was.

So here’s where I need the help. What do others of you that have ramps do when the ramps get snowy or icy?

Wheelchair Dancer: Check ME out!

Not in that way, peeps. Although if you absolutely must. Smile. This comes to me via a variety of folks, and I have enjoyed it so much that I thought I would add it to my blog. It’s a neat, neat idea: How To Borrow A Person From The Library, by Liz Colville at the Hairpin. The Toronto public library has this idea, taken from the library in Copenhagen — that people are just as cool as books and that you could just check out a person from the library.

Recommended Reading for Wednesday

Hi All! My laptop is broken, woe, and thus I am more scattered than even the last month might lead you to believe. (Repair will take a few days, I haven’t lost anything important, and it won’t even cost much to fix, so don’t fret!)

Hand to Mouth: Lilliput touchscreen monitor review: a pleasant surprise

So. A friend of mine did the gambling for me, and surprised me with a 7” Lilliput touchscreen USB monitor. I am typing on it with the stylus taped to my fingers, because otherwise I lose my grip after a while and the pinching motion hurts.

If you want to use this device on something other than your home computer, be aware that the monitor requires driver installations for the device and the touchscreen capability. The disk includes drivers for 2000 through 7, 32 bit. Installation is straightforward, as is the touch calibration – you hold the stylus on 4 points until it says OK. You can also choose 9 or 25 points from the calibration menu later on, and there is also a draw test to determine accuracy. You do need some degree of fine motor control.

Lisa J. Ellwood at UK Uncut: Guest post: Disabled Activists and the Anti-Cuts Movement

Recent media coverage has shone the spotlight on disabled people, and that spotlight has been less than favourable. We are castigated as ‘scroungers
and ‘fakers’ not only by journalists and their employers, but also neighbours, friends and even family. It would seem that the vast majority of the great British public knows several people who are as fit as a fiddle and audaciously raking money in hand-over-fist thanks to bogus benefits claims based on faked illnesses. There is an endless stream of rhetoric to be found when reading any newspaper, blog or listening to talk radio. Too often I find myself reading the latest venomous shots fired by the disgruntled and wonder if the face behind the pseudonym is a familiar one.

Musings of a Marfan Mom: Ellen’s Birth Story

My husband and I decided to have biological children in spite of my genetic risk. During one of my first ob-gyn visits with my first pregnancy in 1999, I brought up delivery options. My bone disorder is rare, and medical professionals who don’t quite understand it can be overly cautious. I knew from my research that women with my type of OI (the most mild type) who have not had pelvic fractures or pelvic deformities can deliver babies vaginally. I was also familiar with research indicating that c-sections are not necessarily safer for babies who have OI. But I was afraid my doctors would freak out about a fragile mom delivering a potentially fragile baby and insist on a c-section. I was relieved when the doctors said they were fine with my planning a vaginal birth. I settled into my pregnancy, took childbirth classes, and looked forward to seeing what my body could do.

Miss Invisible at Fucking Meds: Fun with benzos

Dear Ativan,

You were first prescribed to me on an as-needed basis for panic attacks, and you were so good to me. Other meds often do awful things to my system, but the worst you ever did was knock me out, which was nice when I was, y’know, too panicked for rest. So it made sense for the pdoc to put me on you when I needed a day-to-day med. Just a tiny bit, just a quarter of a .5 mg tablet. Barely a dose at all.

Astrid: Change in Autism Symptoms and Maladaptive Behavior after Exiting High School

I’m not quite in the mood for studying. However, I thought that, since I’ve been nominated for best autism spectrum blogger in the Mental Nurse TWIM blog awards, I’d better do an autism post for a change. This time, I’m going to review a study on a subject that is dear to my heart: the effects of exiting high school on autism symptomatology and maladaptive behaviors in adolescents and young adults with ASD.

Recommended Reading for December 21, 2010

James S. Fell for the Los Angeles Times: Holistic nutrition is weak on science, strong on selling supplements

You may not know the term, but you’ve surely heard its claims. Among other things, holistic nutritionists (or HNs, as they call themselves) may teach that fluoride and pesticides are lethal, that most diseases and detrimental behaviors are diet-related and that many people would benefit from taking numerous supplements. I’ve read plenty of articles by HNs in which they assert that they are disparaged by mainstream medicine and warn you not to trust modern medicine.

Gina Kolata for the New York Times: Tests detect Alzheimer’s risks, but should patients be told?

It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.

Kathryn Roethel for the San Francisco Chronicle: Chronic migraines: When pain is all in the head

After Robertson’s headaches began, she started wearing sunglasses to school because the migraines made her sensitive to light. Then she gave up fencing – a sport she’d competed in for seven years. She cut school to half time, then had to quit altogether.

In their Potrero Hill home, Robertson’s family put in skylights because the light bulbs were too bright for her. They stopped cooking with garlic and onions because the scents made her nauseous. On the rare occasions when she is well enough to eat meals at the dinner table, her mother lowers the lights and everyone speaks calmly and softly.

David Sirota at Truthout: Why the “Lazy Jobless” Myth Persists

First, there’s what psychologists call the Just-World Fallacy — the tendency to believe the world is inherently fair. This delusion is embedded in our pervasive up-by-the-bootstraps, everyone-can-be-a-millionaire catechism. The myth of the lazy unemployed can seem to make sense because it connects those ancient fables to current news, effectively alleging that today’s jobless deserve their plight.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Mental Illness: Brain Function Impairment

Re-branding the current term “mental illness” to the more accurate description “brain functioning impairment”, will go a long way towards solving our stigma problem. We can reposition the impairment term as the politically correct term, and phase out the awful connotations of the old term. At a minimum, rebranding will go a long way toward forcing the general public to change its perception of people with BFI.

Recommended Reading for Monday, December 20

Oh, happy day. They were testing the fire alarms in my building. For two hours. Yes, they work. I have no idea how Don slept through them.

Also, this is going to be a bit of a massive edition of Recommended Reading because I have open many many tabs and want to close them.

Bipolar Burble: I Can’t Remember Not Being Depressed: Emotion and Memory

When I am depressed I can’t remember what it’s like not to be depressed. It’s an interesting phenomenon, actually. Although I, logically, can state that I have spent massive chunks of my life out of major depression, when I’m depressed I feel that’s not true. I literally can’t remember what non-depressed feels like. Logic ceases to be convincing. I understand there’s a high statistical likelihood that depression will pass. But I just can’t believe it when depressed.

Learning Disability Bulletin: Disability Living Allowance Discourages Work? I don’t think so

The facts about learning disability and employment are stark. The latest statistics suggest that in Scotland only 4.3% of people who have learning disabilities are employed in the open workplace. That is a shocking statistic. However, for the Department of Work and Pensions to suggest a causal relationship between Disability Living Allowance and unemployment is at best naive and at worst cynical.

Many people who have learning disabilities would love to have the opportunity to work. However, there are numerous barriers standing in their way. For many, there has been an incorrect assumption that they would be unable to work throughout their school or college lives and as such they have not been encouraged to understand the importance of having a job. ENABLE Scotland is supporting schools, colleges and people who have learning disabilities across Scotland to change some of these assumptions.

The Emperor Has No Toque: One Block: a Tale of Two Caregivers

In most health care institutions, there is institutional stigma regarding mental illness. Rarely are MH patients treated with warmth, or mutual respect, but usually treated like opposing forces. Very few more facilities are newer, up to date or maintained as well as the physical health side of the coin. Mental Health care even though it serves a large and diverse population is usually the recipient of hand me down facilities and equipment. And yes some hospital staff offer different levels of care for mental health and physical health patients.

Gazza, The Rebuttal: The Last Post (via The Abundance of my Heart)

But we deafies that need to watch movies with captions are a fragile lot. So instead of rolling out captioning they have decided to proceed with caution for our own good. “We didn’t know people would get sick!” they claim. “It’s not our fault that the technology has let us down!” they proclaim. That most movies released are 2D and that sickness watching 3D movies is nothing new is not something that the cinema bosses highlight. And let’s not forget our Blind and vision impaired friends! Presumably they get sick listening to 3D movies through audio description so we have to delay the roll out of that too. Bottom line is that the excuse the cinemas are spouting to delay and water down the rollout of captions to cinemas is POPPYCOCK. It’s an excuse! They are throwing their toys out of the pram because they had their hands forced when nearly 500 people let the Australian Human Rights Commission know that what the cinemas were offering was pathetic and that they wanted more. And for once the Australian Human Rights Commission showed some teeth and told the cinemas that what they were offering was an insult and that they needed to do MORE! Now all of this seems to have been to no avail.

Latte Republic: Disability, Work, Income, and Benefits

There are approximately 38,000 Washington residents who depend on the Disability Lifeline program. I challenge readers to live on $450 a month (cash grant plus food stamps). That’s $5,400 a year. The stress from the financial hardship alone is enough to kill a person. No matter how you look at it – it’s inhumane to treat the disabled this badly. We should be ashamed of ourselves as a nation and a state.

Disability Lifeline program enrollees can not accept financial assistance from churches or relatives. If they receive more than the cash grant in any month, they are removed from the program. In 1995, Welfare reform removed the penalties that prevented recipients from working. It’s time to remove those barriers for the disabled. Many disabled citizens could work part time or in their homes, if the prohibition against work was lifted. We should encourage worker re-training and vocational education and allow recipients to accept financial assistance from churches and family members.

Benefits Helped Turn My Life Around (via Forthwritten)

As soon as I was discharged with a punishing regime of psychiatric medication to control my condition, I was advised to find a job. It would give me something to do and besides, living with my employed boyfriend, I wasn’t entitled to benefits. Despite being noticeably manic, with difficulty caring for myself and a tenuous grasp on reality, I looked for employment. In between my grandiose applications for gym instructor roles, I found a job with the help of a friend. I was barely able to wake up in the morning due to the sedating effects of my antipsychotic medication, which gave me embarrassingly noticeable hand tremors. I slurred my speech, and was routinely asked at work if I had been drinking. Though I had disclosed my illness to my employers, I was unable to get time off for psychiatric appointments. Bereft of that support and barely able to take medication because of the adverse effect it had on my work, I became ill again.

NZ: Tasers Used in Mental Health Cases

A new study shows that police tasers are more than twice as likely to be used at mental health emergencies than criminal arrests.

Canada: New Coalition Calls For Completely Accessible Broadcasting System

“While current regulatory trends mean that sight- and hearing-impaired Canadians will only obtain complete access to television in thirty years, Access 2020’s goal is to achieve fully captioned and described television content within the next decade,” said Beverley Milligan, on behalf of Media Access Canada which is leading the Coalition. “We will be inviting the CRTC to empower Canada’s accessibility organizations to research, test, develop and monitor the implementation of modern, multi-platform digital accessibility standards.”

Recommended Reading for 17 December, 2010

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

United States: Tampa’s ‘Sensitive Santa’ allows children with autism to get photographs, too by Shelley Rossetter at the St Petersburg Times:

The mall’s owner, Glimcher Realty Trust of Ohio, started Sensitive Santa in some malls nationwide two years ago and extended the idea to all its properties this year, said Kristy Genna, marketing director for WestShore Plaza.

Ireland: Deaf man can sit on jury, says judge by Eithne Donnellan at the Irish Times:

A HIGH Court Judge has ruled for the first time that a deaf person can sit on a jury in the Central Criminal Court.

Mr Justice Paul Carney yesterday ruled that profoundly deaf teacher Senan Dunne could sit on a trial jury with the aid of a sign language interpreter. He said objections to having a “13th person in the jury room” in the form of a sign language interpreter could be met by the signer taking an oath of confidentiality and the jury foreman ensuring that she or he was confined to translating what went on.

Just updating you on the situation in Sierra Leone (see RR for 3 December): In Sierra Leone, Disability Congress Writes President Koroma by Abdul Karim Fonti Kabia at the Awareness Times:

The NDC highlighted that persons with disabilities remain severely under-represented in political and decision-making positions; disabled hold only 0.01% of parliamentary seats, and; the current representation of disable persons in cabinet is at 0.0%.

Indonesia: City to Soon Issue Bylaw on Disabilities at BeritaJakarta.com

As form of its attention to the disabled, Jakarta capital city government plans to implement local regulations on building facilities and accessibility for the disabled, including the sanctions for the violators. At present, there are approximately 35 thousand disabled people in five administrative areas of Jakarta.

Australia: ‘Warringah Council is seeking feedback on design concepts for the Collaroy Disability Tourism Precinct,’ something you can read about in Disability precinct design feedback wanted at the Manly Daily. Also see Windfall for disabled, also by Brenton Cherry at the Manly Daily:

The vision is to create a holiday destination for people with disabilities and their carers as well as a specialist economic business hub for Collaroy.

It would be a place where not only access to the beach, including to the water using an amphibious wheelchair, is possible, but also restaurants, public transport, accommodation and entertainment facilities.

Here’s the page on the Warringah Council website. Collaroy is a beautiful place on Sydney’s Northern Beaches. I am so excited to hear about this proposal, and hope that more people will be able to enjoy that stunning beach!

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Recommended Reading for 16 December, 2010

Talulah Mankiller at Life Under a Rock: Just the Facts, Ma’am (via Kiri) (post mentions domestic violence but doesn’t describe)

Even when I was very sick and had no idea what was wrong, I always had two versions of reality in my head: what I logically knew was actually probably going on, and what I emotionally understood was happening. The two rarely matched up, but that doesn’t mean that they weren’t both there. For years, various people made futile efforts to help me “grow up” and “learn to deal with things” by trying to get those two versions of reality to overlap as much as possible, but the fact of the matter is that they were never going to. Because those kind people, those lovely people, thought if I just understood that another, less emotionally volatile reality existed, then I would just magically walk right over there and everything would be fine.

Problem was, I’d been well aware of that reality the whole time. I just couldn’t reach it. Because, you know, MY BRAIN CHEMISTRY IS FUCKED.

Kiriamaya: “Why aren’t you angry?”

Because I’m fucking exhausted, that’s why. Depression means I don’t have much energy to begin with, and I have to use most of what I do have for school, work and social situations, which doesn’t leave much over to do activism or to be angry about shit. Oh, and I’m also trans, which means I have to constantly fight just to be seen as human (and usually fail). And I try to squeeze creative projects in amidst all this because that’s how I keep from killing myself.

Old Kentish Sign Language Put On the Worldwide Endangered List

A centuries-old sign language thought to have been spread throughout America by Kentish settlers is on the worldwide endangered list.

Evidence of the use of Old Kentish Sign Language dates back as far as the mid-1600s, but is now thought to be extinct thanks to the rise of British Sign Language in its place.

It is also thought to be one of the forerunners of American Sign Language, as a number of 17th century settlers on the island of Martha’s Vineyard near Massachusetts – the majority of whom knew how to sign – migrated from the Kentish Weald.

Disability Scoop: Violent Crime Odds Double for People With Disabilities

The findings come in a report released Thursday by the Department of Justice’s Bureau of Justice Statistics that looked at 730,000 nonfatal violent crimes during 2008 in which the victim had a disability. Overall, those with disabilities age 12 and older experienced crime at a rate of 40 cases out of 1,000. During the same period those without a disability were affected at a far lower rate of 21 per 1,000, the findings indicate.

ABC (Australian Broadcasting Corporation): Inside an isolated world

There are more than 300,000 Australians who are deafblind and an Access Economics report is predicting that with an ageing population that figure will top one million by 2050. The 7.30 Report’s Natasha Johnson spent a day with a woman who is deafblind to witness the many challenges she faces.

Recommended Reading for 15 December, 2010

Jody McIntyre: Student Protests, Part Three

From the corner of my eye, I spotted one of the policemen from the earlier incident. He recognised me immediately. Officer KF936 came charging towards me. Tipping the wheelchair to the side, he pushed me onto the concrete, before grabbing my arms and dragging me across the road. The crowd of 200 ran and surrounded him. I got back up and stood in front of the horses.

When I finally got home at 5am, exhausted but pleased at what can only be seen as a victory, I found that the picture of me being pulled from my wheelchair had been creating a bit of a storm online. But I am not the real victim. The real victims of yesterday are people like Alfie Meadows; a 20 year-old student who was rushed to hospital for emergency brain surgery after internal bleeding caused by police truncheons.

Abuses Reported at Mexico’s Institutions for the Disabled

MEXICO CITY — Ten years ago, a human rights group released a scathing, groundbreaking report on abusive, decrepit conditions in Mexican institutions for the mentally and physically disabled, moving the country to promise change and to take the lead in writing international agreements to protect the disabled.

But in a new report released Tuesday, the group, Disability Rights International, working with a Mexican human rights organization, said a yearlong investigation revealed “atrocious and abusive conditions” that included lobotomies performed without consent, children missing from orphanages, widespread filth and squalor, and a lack of medical care.

Making the Case for Irish Sign Language in Education

“As we say to parents at this stage, don’t think about your child at five . . . think about your child at 10, at 15 and at 25. Where is he or she going to be at 25? You know, part of a deaf community or a hearing community, but hopefully a mix of the two. And sign language is a critical aspect of that.”

NPR is doing an investigative report called Home or Nursing Home

People ages 31 to 64 now make up the fastest-rising proportion of nursing home residents. One reason: As states face record budget gaps, the programs that help people live at home are being cut.

Muscular Dystrophy Org: Disabled children hit by Residential Education Transport cuts [This link has a moving image on the top that makes me dizzy to look at]

In a move condemned by the Muscular Dystrophy Campaign, when changes to mobility support claimed through the Disability Living Allowance come into force in October 2012, families with a disabled child in a residential school will immediately lose access to either adapted vehicles used to transport their children or the £49.85 a week allowance available to assist with the higher costs of accessible transport.

Recommended Reading for December 14, 2010

K__ at Feminists with FSD: Notes on MTV’s True Life: I Can’t Have Sex

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Carol at Aspieadvocate: I’m an Embarrassment

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

David Gorksi at Science-Based Medicine: Death by “alternative” medicine: Who’s to blame? [trigger warning]

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Arwyn at Raising My Boychick: How far I’ve come

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

Linsay at Autist’s Corner: Autism-related gene spotlight: CNTNAP2

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

Recommended Reading for 13 December, 2010

You are Here: Safety Haiku: Automatic Captions

This is the reason why you should not send me breathless, excited emails about the wonders of automated speech-to-text. You see the “CC” button and you think you and I will both enjoy the same media. This is what I actually get. (On the other hand, in a black turtleneck and beret, with bongos in the background, this little poem could actually be kind of cool.)

Where’s the Benefit: Demolition of the Case for DLA Reform

In fact, though the report claims that there exists a “perception of disability permanently precluding work is prevalent among individuals with disabilities not already in employment”, there is no evidence cited in the report that suggests DLA could be a barrier to work. The section and all references to it in the consultation paper could be interpreted as an attempt to misdirect, and should be removed forthwith. Further, it should be noted that the consultation commits the statistical crime of confusing correlation with causation. Whilst RR No. 648 does provide evidence that low employment is correlated with claiming of DLA, this in no way implies that one causes the other.

Guest Post at MarfMom: Jennifer’s Birth Story #2

Jennifer Levesque, 38
Diagnosed with Marfan at age 12 -inherited from father
Mother of two
Methuen, MA

Boing Boing: Universal Subtitles: add subtitles to any video on the web

For video creators, this is a dead simple way to increase the audience for your work — especially since there’s a full-text search coming shortly. For subtitlers, the upcoming workflow management and collaboration tools will make volunteer efforts even easier to run.

Both Mozilla and Wikipedia will be including the Universal Subtitles tool for their videos — and the tool itself is free/open source software, which means that the community can be sure that it won’t be orphaned and that the tool can always be improved.

Trigger Warning for violence against disabled people: Damn Interesting: Howard Dully’s Lobotomy

Howard Dully was brought in for the procedure because his stepmother described him as “unbelievably defiant,” saying among other things: “He objects to going to bed but then sleeps well. He does a good deal of daydreaming and when asked about it he says ‘I don’t know.’ He turns the room’s lights on when there is broad sunlight outside.” After Howard’s stepmother visited with Dr. Freeman, he suggested that “the family should consider the possibility of changing Howard’s personality by means of transorbital lobotomy.”