Why I’m Voting “No” on Massachusetts’ Question 2

Imagine this situation: A woman arrives at a hospital for a medical procedure. She is obviously sick, in pain, and severely disabled. She’s in a wheelchair and on oxygen. She needs help getting from her car to her wheelchair, and going to the bathroom, and changing into her gown. Whenever she’s moved, she grimaces, her hands and feet curled in pain. It looks and sounds like talking and even breathing are an effort. In fact, her disease has rendered her incoherent, so the person with her translates her gestures and sounds to the nurses. The patient is asking for a legal document before the procedure — a form.

The nurse immediately understands. “I know what you want,” she says and returns quickly with the paperwork. She explains that these are advance directive forms that the patient can fill out to decline life-saving treatment. The patient says no, she just wanted to update the contact information on her health care proxy forms, which the hospital keeps on file. In fact, the reason she is certain to keep her health care proxy forms updated is that she does want extreme measures. No matter how grim her situation appears from the outside, she wants her friends to advocate for her right and desire to live.

Of course, this is not hypothetical. The woman is me. That incident happened a few years ago. At the time, I was too stunned to take in the meaning of what happened. It was only later that I realized that the nurse had, in effect, offered me a DNR (do not resuscitate) form without my asking, that she had basically asked me if I wanted to die. It’s possible she offers those forms to everyone, but I doubt it. I think it’s more likely that my appearance, the fact that I was visibly severely disabled, led the nurse to the conclusion that I didn’t consider my life worth fighting for.

That story is part of my very personal reason for opposing ballot question 2: I know the “slippery slope” referred to below is not a hypothetical for the future. Some people have already slid down it. Some people have already been pushed. I learned that day that I had to hold onto my breaks even tighter than I thought I did because I was already on the slope.

But there are a lot more reasons to vote against Question 2. The fact is that even if you support the idea of assisted suicide for dying people — the right of someone who is actively dying, who is in pain at the end of their life and wants a way to hasten death by just a few days — you should still oppose this ballot initiative because it is full of gaps and loopholes and opportunities for abuse. It is, quite simply, a bad bill, a bill that ought to spur you towards Second Thoughts:

• Question 2 is modeled in the laws in Oregon and Washington — laws which have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations. For example, from an article by John Kelly in Disability Issues: “Disabled people constantly hear how expensive we are, how money could be better spent elsewhere. In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying them chemotherapy for their cancer.The letters did inform them, however, that the state would cover the $100 cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. In a system constantly under pressure to cut costs, choice will be constrained.” (More on this topic in this excellent article, PDF, by Carol Gill.)

• Elders and people with disabilities are at greater risk for abuse than the general public, and they are also the people most affected by this bill. The rate for elder abuse in Massachusetts is estimated at one in 10 already, with the vast majority of abusers being caretakers — family, heirs, and providers of medical and personal care — the same people in a position to help someone obtain and ingest the poison pill.

• Risk for abuse is inherent in the law: According to the Cambridge Commission for Person’s with Disabilities, “Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.“

• The National Council on Disability (NCD) Position Paper on Assisted Suicide states that: “The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing. . . . The so-called ‘slippery slope’ already operates in regard to individuals with disabilities. . . . If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.”

• Inexact wording and application. Anyone who a doctor says has six months or less to live can be given fatal drugs, but doctors are fallible, medical conditions are diverse, unique, and complex — it is not easy to determine how long someone will live. Many people outlive their prognoses for months or years. Some even recover. (I know someone who was terminally ill 15 years ago, and she’s still writing and publishing books today!) It is also a fact that wherever assisted suicide is legal — whether in Oregon or the Netherlands — the definition of who is eligible becomes broader and broader. It is not confined to people who are imminently dying, but also to people who are not terminally ill, particularly people with disabilities, chronic illness, or elderly people.

• Inattention to mental health issues. According to Second Thoughts member, John Kelly, “In 2011, exactly 1 out of 71 Oregonians seeking assisted suicide were referred for psychiatric evaluation. With the total 14-year referral rate below 7%, people are not being adequately evaluated. Michael Freeland, who had a 43-year history of depression and suicide attempts, easily got a lethal prescription, and it was only because he mistakenly called an opposition group that he was spared suicide. He also outlived his terminal diagnosis.”

• One of the key reasons that disability rights activists oppose such laws is that the focus of the laws, and the way they are carried out, are not really about providing more comfort in the last hours of a life that is already fading. It is about fears and lack of understanding about what it means to be disabled or ill — a state that many of us spend our entire lives in, often quite happily. Quoting Kelly again: “That word ‘dignity’ in the act title signals that assisted suicide is not about preventing pain and suffering during the actual dying process, but about escaping the perceived quality-of-life beforehand. People’s concerns listed by prescribing doctors are almost exclusively social: people seek assisted suicide because of limitations on activities, incontinence,feeling like a burden, and perceived loss of dignity. We disabled people know that our dignity does not depend on performing our own self-care or being continent every hour of every day. We know that there are social supports such as home care and PCAs that can remove any family burden, and we understand that our dignity is just fine thank you, without having to die to get it.”

Or, to put it another way, I echo Diane Coleman’s statement, published in the New York Times, “It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.”

For more information on Question 2 and assisted suicide, please visit the Second Thoughts website or read this excellent New York Times op-ed on Massachusetts Question 2 which was just published on Wednesday.

Peace,

Sharon, the muse of Gadget, and Barnum, SD/SDiT

I’m Writing Again

Back before Gadget died, before Barnum was born, before I started blogging, before Lyme disease ravaged my life, I was a writer. And now I am becoming one again, thanks in part to you reading this blog and encouraging me. Thank you!

Back in the Day

Disability Literature and Culture

Yes, Virginia, there was writing before blogs. I used to manage and edit Breath & Shadow, a literary journal of disability culture, and I wrote occasional essays and articles (some humor, some disability studies), short stories (usually erotica, though not always), and poems for a variety of paper and online magazines, newsletters, papers, journals, and anthologies. From 1992 through 2006, I slowly built up a writing career. It was a challenge because I was disabled by chronic illness very soon after I graduated from college, so there were many years where getting published at all was a big deal each time it happened.

In January of 2007, I moved house, which I spent months trying to recover from. That summer, I got Lyme disease, which picked up my world and shook it like a snow globe. A lot of the time, my world still whirls around me in chaos. From 2007 through 2010, I did almost no writing. I handed over the reigns of Breath & Shadow to another editor, to whom I’m very grateful. During my most extreme years of illness, I did manage to write a couple of essays — a grueling undertaking — and a very small number of short erotica pieces. I also conducted periodic interviews of activists with multiple chemical sensitivity (MCS) for Our Toxic Times,* the newsletter for the Chemical Injury Information Network. If you have MCS or want to keep abreast of issues relating to environment and health, I highly recommend joining. The newsletter is excellent, and you will be supporting a 501(c)3 nonprofit that puts every penny to good use.

MCS: Roller coaster or merry-go-round?

Aside from the interviews, most of the stuff that got published in that time period were pieces that had been written earlier. Some were reprints; others were pieces that were waiting for the right home. And, after Gadget died, in December 2009, I started this blog. Blogging, I discovered, did not require the extremes of care, editing, proofing, and other work I usually put into writing. It offered me some slack that enabled me to continue writing.

“Professional” — or something**

Slowly, in the past two years, I have begun to write professionally again. I’m still hampered by severe swings in my cognitive and physical functioning and by needing to spend so much energy on training Barnum, but I’m managing to pick up a slow, stuttering sort of momentum. I know many of you read this blog because you’re interested in the topic of service dogs, dog training, recovering from loss, and other topics I cover. Others of you have told me you subscribe because you like my writing. I’m preparing for a big writing undertaking (a book, actually), and it would be very helpful to have more readers “follow me” to some of my other writing sites when my book project devours my soul takes over my life becomes the focus of my passion.

I wanted to tell you where else you can read my writing and ask you to subscribe/follow me on those sites, because I don’t generally post here about my writing elsewhere. I have some big projects I’m working toward — I hope to unveil the details about The Book in upcoming months — but meanwhile I need to keep stretching and exercising my writing muscles that are a bit stiff and atrophied from disuse. I would love it if you’d join me in some of my new writing ventures!

Dykes, Dogs, Disability, and . . . Maine?

Here’s where you can find some of my work:

– My writing blog, Bed, Body & Beyond, focuses on life as a writer with disabilities. Although historically I haven’t posted there as often as here, I have been posting there more frequently lately. I also put a lot of care into the posts that appear there. Sometimes a great deal of research and thought goes into a single post, such as this one about the language of disability.

The longest alt tag ever?

Lately I’ve focused more on being an erotica writer, but so far I haven’t actually published anything x-rated on my blog. However, there have been requests for excerpts, so I might start posting some teasers, perhaps focusing on stories with a disabled protagonist (hint for upcoming book project!). Rest assured, if I do post something explicit, I’ll put NSFW (“not safe for work”) in the subject line so people can make an informed decision about whether to read it. Most of the time, so far, material on that site is not remotely explicit.

Recent posts include interviews with editors of books in which my work has appeared in 2012, a discussion on the language associated with disability, some reviews of my work, and pages with blurbs and links to online and book publications. As my work gets published elsewhere (I have essays, fiction, and possibly poetry coming down the pipeline) I’ll post interviews, excerpts, and links. I’d love if you subscribe/follow my writing blog! (Note: This is a Blogger blog, which means that subscribing by RSS is easy for anyone, but subscribing by email requires doing a Captcha [“word verification”]. If Captcha is a barrier for you, please contact me and I will subscribe you. I apologize for the inconvenience.)

I’m ba-ack…

– Ability Maine — the website of disability news, views, information, and literature, especially (but not exclusively) with a Maine focus. One example is an interview I did with Arnold Mann, the investigative reporter for Time and USA Weekend who published a fantastic book on corporate and government complicity and coverups of chemical injury.

I’ve also started a blog for Ability Maine — Ability Maine Blog. At the blog I post blurbs and links about new content at the main Ability Maine page as well as its literary journal, Breath & Shadow. I also have started posting short, time-sensitive posts relating to disability news, events, culture or other pieces of interest to the disability community in Maine or around the world. Subscribing to the Ability Maine blog is a great way to read my new writing and found out about information of interest to the disability community. Those are actually *short* blog posts, which is a rarity with me, you know. (Note: This is also a Blogger blog, which means that subscribing by email requires doing a Captcha [“word verification”]. If Captcha is a barrier for you, please contact me and I will subscribe you. I apologize for the inconvenience.)

IAADP logo

– Partner’s Forum, the newsletter of the International Association of Assistance Dog Partners (IAADP). I have written occasional articles for PF for many years, usually training tips or equipment ideas. Now I am also helping the editor, Joan Froling, with locating, editing, and writing work on what will hopefully be an ongoing basis! You need to be a member of IAADP — a 501(c)3 nonprofit organization — to get the most recent issues of PF. Anyone is welcome to join. It’s a great way to support and learn about what’s happening in the assistance dog world. Partner members (those partnered with a working assistance dog) also receive additional benefits with membership.

– Amazon.com Listmania — I now have two listmania lists at Amazon of most of my work that’s appeared in books. (Work from magazines and such is more difficult to make available.) One list of books are nonfiction pieces (essays or humor) and the other is lesbian erotic fiction.

– The Chronic Writer(??) — Way back in the day, I wrote a monthly humor column called Sick Humor for Ability Maine. It was an outgrowth of my comic strip by the same name. “A twisted look at life with disability.” When I was invited back to write for Ability Maine, I really wanted to start writing again about the life of a writer with chronic illness, although I wasn’t sure I wanted it to be purely humor/satire. I wanted to do interviews with other writers with disabilities or chronic illness, write about some of the complexities of writing with impaired cognition and limited energy, the politics, the unexpected gifts of writing. I planned to call it The Chronic Writer.

I haven’t yet written an official Chronic Writer piece, although I’ve written lots of partial pieces, and I’ve published pieces at Bed, Body & Beyond and at Ability Maine that could certainly fit under the “Chronic Writer” rubric. My current plan is to move both my blogs (After Gadget and Bed, Body & Beyond) to my sharonwachsler.com domain (which is very, very old and outdated, so I am not linking to it) and launch The Chronic Writer there. That website would be the home for all things Sharon-the-writer-Wachslery and would also allow me more freedom than using Blogger or WordPress freeware (especially as I’ve recently been made aware of an issue with WP Terms of Service). But, it’s been my plan for years to update my domain, so let’s call this a work-in-progress in progress, shall we?

So, that’s my big news. It’s a bit scary to make this announcement as if it’s some done deal, as if I can be relied upon to keep producing. Because if I had a dollar for every time I’ve said, “I’m doing better. I’m starting to write again,” and then discovered that I couldn’t even finish a piece of flash fiction or a blog post . . . I would have made a lot more money than I ever have on anything I’ve published! But that is, after all, the way of the Chronic Writer.

– Sharon, the muse of Gadget, and Barnum, SD

*I’m still doing OTT interviews when time and energy permit, so if you are chemically injured, and you are involved in any form of activism, very broadly interpreted, please drop me a line, and we’ll see if you’re a good fit for my series. My goal is to profile one activist from each US state (and then perhaps I’ll move on to US territories and other countries after that).

**My definition of professional writing: getting paid occasional paltry*** sums for huge amounts of work OR getting paid nothing to have your work appear in academic or literary venues. This definition is slightly different if your name is J. K. Rowling or Stephen King.

***I recently got a royalty check for $1.36. That was $1.36 more than I had expected to earn in royalties for the year for that piece!

What Would YOU Like to Know about Assistance Dogs?

After I published this post for Blogging Against Disableism Day, I received a note from Sarah Levis inviting me to guest post on her blog, Girl with the Cane. I wasn’t sure what I should write about, other than “service dogs,” so we decided to put the question to you, dear reader.

What would you like to know from me about raising, training, or partnering with service dogs?

I’ll take any question, no matter how detailed or general, public or private. Why owner train instead of use a program? Differences between clicker training and previous methods I’ve used? If I have human helpers, why do I need a dog? What is my preference for how others behave around my dogs? Why bouviers and not Labradors? Why did I switch from adopting adults to raising a puppy? What’s the most embarrassing/exciting/shocking thing my service dog ever did? What do members of the public do that annoys me the most? How did I know I wanted a service dog? And all those questions I can’t even guess at. . . .

So, you have a question?

Nothing is off-limits! If you have ever wanted to ask something but thought you shouldn’t because it was too personal or offensive or silly or “ignorant” or you “should” already know the answer, etc., be silent no more. This is your opportunity!

I’ll accept questions for the next two weeks. Please post them as comments to this post here (or, if you’d like your question to be anonymous, at today’s Girl with a Cane post on this topic). After Sarah and I collect all the questions from both blogs, I’ll attempt* to answer them all, and Sarah will post those answers at Girl with a Cane. (I’ll put a link up so you’ll find out when that post is up.)

I’m very curious to know what you’re curious about!

– Sharon, the muse of Gadget, and Barnum, SD/SDiT

*I say “attempt” because I might receive a question that I can’t answer. For example, if I’m asked what it was like for me to have a guide dog or train at a service dog school, I won’t be able to answer those questions directly because I haven’t had those experiences. But I might ask one of my friends who has such experiences if they would be willing to answer. If I can’t give a complete answer to a question, to quote Albus Dumbledore, “I shall not, of course, lie.”

Waspish Wednesday: The Obstacle to Training My Service Dog

A Despair, Inc., Demotivator

[To enlarge image, click here.]

The theme for this month’s Assistance Dog Blog Carnival is “Obstacles.” Lately it’s become very clear what my biggest obstacle is in training Barnum: me. Or, to be kinder and more accurate, my panoply of disabilities and their attendant symptoms.

While searching for inspiration to create a catchy title for this post,I  googled famous quotes on obstacles. I ended up at the proverbia.net Obstacles page. Here are two representative quotations:

Obstacles are like wild animals. They are cowards but they will bluff you if they can. If they see you are afraid of them… they are liable to spring upon you; but if you look them squarely in the eye, they will slink out of sight. ~Orison Swett Marden, American author and founder of Success magazine

Stand up to your obstacles and do something about them. You will find that they haven’t half the strength you think they have. ~Norman Vincent Peale, American preacher and author of The Power of Positive Thinking

What I noticed as I read through the quotes (aside from the fact that, except for unknown authors, these were all said by successful white men) is that the underlying message to all of them is this: Obstacles aren’t real. What you think is an obstacle is actually your personality defect. Get some perspective, little missy! Ditch the bad attitude and start thinking B-I-G! If you fail, it’s because you didn’t follow the dream recklessly/doggedly enough, and it’s your own damn fault.

Uplifting, no?

Although most of these quotes are from a century ago or more, the ideas they espouse are the same victim-blaming, magical-thinking-induced ideologies that I and every other person in the US (and most other countries) are relentlessly subject to today. (If you need some convincing, please read Barbara Ehrenreich’s excellent book, Bright Sided: How Positive Thinking Is Undermining America. She lays it all out much better than I ever could.)

Many of us with disabilities or serious illnesses get told by family, friends, strangers, even doctors how positive thinking, and mind-over-matter, and mind/body connection, and blah blah blah is going to cure us. How if we think positive! And act cheerful! And smile! And be good little poster kids and supercrips and Brave, Inspirational, Role-Models (because therebutforthegraceofgodgoyou), we can overcome every obstacle! After all, isn’t that what the American dream is all about? Isn’t that what all the commercials tell us — about limitless growth, wealth, expansion, progress?…

In fact, this quote was my favorite of the bunch at the Proverbia.net site because it is just so brutally honest in its social Darwinism:

The block of granite which was an obstacle in the pathway of the weak becomes a stepping-stone in the pathway of the strong. ~Thomas Carlyle, British historian and essayist

That’s the truth of it: If you’re “weak,” too bad for you. If you’re “strong,” you get all the cookies. (And by cookies, I mean, money, security, respect, freedom, independence, choices, opportunities, etc. In a nutshell, privilege.) Basically, “weak” can just be a stand-in for whatever misfortune or trait a person might have which puts them on the margin. Of course, “weak” can also literally mean “weak,” and that’s a reality for some of us, too.

My biggest obstacles are not imaginary. They are not any sort of personal failing on my part or Barnum’s to be determined, smart, dedicated, hard-working, or creative enough. Because, in all honesty (but not modesty), I have all those traits. And they’re not enough. My severe pain and mondo-weirdo sleep disorders and exhaustion and inability to think clearly and inability to drive and inability to leave the house and inability to leave my bed and struggles to walk, talk, bathe, etc., all affect my training with Barnum in every possible way.

It is so damn frustrating! I want a trained SD desperately. It’s true that I am training him to a higher standard — in terms of both the solidity and number of skills he’s learning — than I used with Gadget or Jersey. Nonetheless, I’m also a better trainer, and we’ve been working longer than I’ve ever worked to get a SD completely trained. I don’t want to just keep training forever! I want to spend time with Barnum working, playing, getting out and about, having fun, being free and independent. I want this so bad! And lately it has become so starkly apparent that the reason we are so behind in so many areas is not him; it’s me.

When he started rounding the corner to two year’s old, a lot of dog maturity suddenly clicked into place. He has more energy. He catches on to ideas much faster. (I wrote recently about how we’re having more “light bulb moments.“) He’s more enthusiastic and confident. He wants to train. Indeed, he wants to interact with me all the freaking time! He’s insatiable! He’s turned into a training machine. This miracle I’d been hoping for of a dog who really wants to work, who chooses to be a service dog, is coming to pass. And much too much of the time, I’m so damn tired, I just want him to leave me be. I want peace and quiet and rest.

And I also want so much to work, work, work him. Lately, when we train, the clicker magic is there. He has recently — within the last three weeks — either learned the beginnings of or dramatically improved aspects of the following behaviors:

• Opening the refrigerator
• Opening my bedroom door (almost a completed behavior and on cue) and opening the bathroom doors (understands the cue but hasn’t figured out how to work the doors yet)
• Pulling my bedroom door shut from the outside (which is a completely different set of behaviors than shutting it from the inside)
• Carrying an item in his mouth from me in bed to a PCA in the hall
• Standing or sitting on a table to be groomed
• Going into crate as a default when I start eating a meal (not 100 percent yet, but more often than not)
• Nose-targeting my feet (which will later be shaped into pulling off my socks and helping me move my legs when I can’t do it on my own)
• Generalizing the light switch UP skill
• Learning the light switch DOWN skill
• Going to find a named person to let them know I need help
• Retrieving novel objects from the floor
• Holding his head and mouth still (no chewing or licking) for tooth brushing
• plus doing ongoing work on go-to-mat, down-stay, sit-stay, zen/leave it/self-control, come, crate, quiet, separation anxiety, and other things I’m forgetting.

All of which is probably leading you to think, “Damn! They’re doing great! Why is she complaining? Clearly they are overcoming obstacles, otherwise they wouldn’t be showing all this progress, right?”

Yes and no. Yes, we’re making progress. Nobody is more aware of that or more excited about it than I am — believe me! I’ve waited a long time to see this. There was a time I thought we were hopeless! I’ve tweeted and posted on our Facebook page, and on the Training Levels list, about how Barnum has really started to help me with some important skills, especially when I’m very sick. This is terribly exciting, and there have been a time or two I almost wept with gratitude and joy that we have achieved this place. I also tend to shower him with praise, hugs, and kisses when these events take place.

What I’ve noticed the most, when I actually need help, and I ask him to do that thing, not just as a training exercise, but because it would really be damn useful, and he does it, it’s a totally different world we are entering. It’s the world of partnership, of a new level of communication, of moving from mommy/baby or teacher/student to something more like, well, partners. It’s really the word that sums it up best, because it’s appropriate in every nuance and meaning of the word — equals, mutual supports, working team members, family, beloved, etc.

But. . . .

We are not there yet. Most of the skills above are still in their youth, if not their infancy, in some cases. Most of the time I’m still putting the energy out, out, out, and only sometimes is it coming back. By his second birthday, I really had expected him to be working full-time, with just polishing of a few skills. Instead, only a few of his skills are in working order, most of them are under construction, and a few haven’t even been introduced.

So, yes, the reason we have achieved what we have, despite the immense obstacle of my illness, is due to our determination, smarts, dedication, hard work, and creativity. We certainly wouldn’t have gotten here without all that. But the fact remains that we still have so very far to go because the obstacle of my illness is real and cannot be “overcome” as in the endemic supercrip trope. We can only chip away at this block of granite a little bit at a time, sometimes with a pick-axe, and a chunk comes tumbling down, but mostly with a dull pocket knife, or a bent spoon, or sometimes just a toothpick or a thousand drops of water over the course of years that hollow out a smooth indentation where I rest.

– Sharon, the muse of Gadget, and Barnum, eager SDiT

Disability & Occupy: Disability Blog Carnival #79

The Disability Blog Carnival Badge

I’m delighted to be hosting the seventy-ninth Disability Blog Carnival. I chose the theme of Occupy (as in Occupy Wall Street/#ows) for this edition. I have to say that I’m proud of this post. It makes it abundantly clear what we have to teach each other and ourselves, and what we have to learn.

I posed a lot of questions for people to respond to for this carnival. However, the majority of the posts in this edition were written before my call for entries, indicating that Occupy is on the minds of many who blog about disability already.

One of the pictures from the Facebook photo album, "Faces of the 99%"

Occupy Activists with Disabilities

I enjoyed a great deal reading posts by people with disabilities who found joy, meaning, liberation, or other empowerment by participating in Occupy activism.

I thought it would be appropriate to start the carnival off with a post by Penny at the Temple University Disability Studies blog — the home of the disability blog carnival! — has a blog post up called Disabled and Proud at Occupy Oakland. It is mostly a short Youtube video of the General Strike called by Occupy Oakland, and it includes people with disabilities who are activists there. Penny has transcribed the portion of the video where the people with disabilities are being interviewed.

Rocking (and Flapping) at a 1000 Revolutions a Minute is definitely one of my favorite posts on disability and Occupy. It is a must read! This incredibly powerful, liberating post by Savannah Logsdon-Breakstone of Cracked Mirror in Shalott includes a captioned video Savannah took of herself at an Occupy DC event, off by herself, rocking, and how doing that contradicts the harmful messages she’s been subject to based on others’ responses to her being an Autistic:

The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.

Denise Romano spoke at the #OccupyWashingtonSquare Park General Assembly, addressing worker’s rights, in which she included the rights of people with disabilities. As someone with an intermittent speech disability, I was excited to read Denise’s opening sentence to the GA where she essentially tells them to ignore her speech disability and then goes on to deliver a comprehensive, kick-ass labor rights teach-in. The text of her speech is up at her blog, Workplace Credible Activist, in the post, Occupy Your Workplace (scroll down to where it says “My name is Denise Romano” to read the speech).

When we demand zero harassment
we must not engage in harassment

When we demand zero discrimination
we must not engage in discrimination

When we demand zero retaliation
we must not engage in retaliation….

Connections and Intersections

In her post, Decolonizing Our Voices, Savannah Logsdon-Breakstone of Cracked Mirror in Shalott describes the parallels she sees between the 99 percent movement and her activism against oppression of Autistics. In fact, she published this post on Autistics Speaking Day, an annual event to counteract the messages of pity and misinformation coming from certain autism organizations (which are run by non-Autistics).

After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large ‘non’-profits such as Autism Speaks.

In her post, Why I write… yes, fibromyalgia and Occupy in the same post, Kathy of The Fibrochondriac admits that blogging just didn’t feel fulfilling for her, didn’t give her a sense of purpose, when she was focused on fibromyalgia information and resources:

Then purpose found me… I started looking for things to talk about with John (domestic partner/husband). And I found a lot of things I didn’t like about how our government worked. Then I started meeting people who are just as concerned as I am. And it felt good to get out and listen to what they had to say. Yeah, Occupy. Again.

Lynette, who blogs at The World As I See It, My Life As It Happens, takes us on a journey of her initial lack of interest in Occupy Halifax to a ripening consciousness of what the movement could become and the role of disabled activists within it. In her post, Occupy your Heart, Occupy Your Mind, Occupy Your World, she begins her discussion of the role and burden of the disabled activist in this way:

But if I stepped back and did not get involved, i could not expect anyone in the occupy movement to represent my interests as a disabled woman. A homeless addict or a third-year college student who has never met a blind person isn’t likely to understand how society should change to include me and others like me. If I don’t make my voice heard, then I can’t expect the movement to recognize my needs.

Deciding Against Occupy

Like Lynette, Brooke at Ruled by Paws started out leaning in one direction and ended up in the other. Whereas Lynette started out skeptical and ended up being drawn in by the movement, Brooke initially thought the movement had appealing ideas, but upon reflecting on what a successful Occupy movement would mean, she has decided she is not in favor of it. In The Occupy Movement, she starts out her ponderings with questions:

I have found myself more and more skeptical of its effectiveness and continue to wonder if the ‘99%’ includes people like myself. If the Movement were successful, would I benefit? Would the world become more accepting and accommodating of people with disabilities? Or would we be pushed aside, and left to fend for ourselves in an even more undemocratic and economically unbalanced society.

Exclusion and Alienation

Even among pro-Occupy activists, the relationship between Occupy and disability rights is not all shiny-happy-people-holding-hands! Some who have participated — or tried to participate and been thwarted — in Occupy activities have met with ableism.

One of the most powerful posts I’ve read about Occupy and disability — and which has been much discussed and ranted about in the disability activist community — details the infuriating, heart-wrenching, and all-to-familiar experience of Big Noise in her post, Who Are My Brothers and Sisters in the Struggle for Justice? So many amazingly appalling things take place, I couldn’t decide what aspect to tease: That the organizers picked a meeting space up three flights of stairs? That they booed the blogger’s allies when they raised access concerns? That they used sexist comments to try to shut up her husband? That try tried to turn things back around on her and give her a sob story? If you are an Occupy activist who is not familiar with disability access issues, you seriously need to read this post!

Noah’s post, Dear Ableist Assholes in Occupy Seattle, gets right to the point in his first two sentences: “I am a wheelchair user who took part in the December 12th West coast Port shutdown. I want to say fuck you to all the people who belittled me and talk down to me while I was out there.” Along with his link for the carnival, Noah provided some interesting information about how the post was received and why it’s at Our American Generation:

This is an open letter I posted in the Occupy Seattle Facebook. It has since been removed from the group page because of the controversy it started. The comments it received were very harsh and offensive to many people. The letter was a response to the way I along with my friends were being treated. The harsh language was used on purpose to show that people with disabilities are not submissive and to question how people view myself.

Anonymous, posting at Occupy at Home (#OAH), urges members of the movement to become aware of multiple chemical sensitivity (MCS) access, as well as to make the connection between the 99 percent movement, MCS, and corporate interests. To the Other 99%: Dump the Corporate Toxins & Let Us Join You! Anonymous declares:

We see how corporations have been making, marketing, and selling everyday products with cheap, unnecessary, harmful, toxic ingredients derived from fossil fuels, while they claim these pollutants are safe. We see their efforts at blocking legislation to ban toxic ingredients and preventing warnings to consumers to keep their cell phones at least an inch away from their bodies at all times and to keep them off when not in use.

Educating Occupies about Disability and Access Issues

Some bloggers are addressing nondisabled members of the 99 percent in an attempt to raise disability rights consciousness and provide disability access education.

One of my favorite efforts in this area is by Occupy On Wheels: Awareness, Inclusion, Solidarity. OOW is actually a group with a Facebook page, not a blog, but they created an incredibly spiffy video that I’m considering a vlog and posting it here. It is a funny, easy-to-understand, and very engaging 17-minute video about wheelchair access: What makes a location wheelchair accessible or not, why camping out is not powerchair accessible, how to find accessible locations, etc. It is close captioned and narrated. A transcript of the video is here on Facebook or here at the Occupy at Home blog. I’ll edit this post to put in the link to the transcript when it’s ready.

OOW also has many excellent articles, including, “Tips: Is your GA meeting accessible?” “Protest Signs & Alternative Ways to Show Your Solidarity,” and “Mini Occupies: A Day-Time Alternative to Camping Out.”

The reason I’m happy that I’m a day late in publishing this carnival is that it allows me to include this just-posted link on a really crucial issue for the Occupy movement. At Pushing Limits, the blog of the KPFA radio show by the same name, Adrienne Lauby introduces the topic for her next show, Mental Disability Within Occupy. The show airs tomorrow, Friday, and will feature three guests:

Herbert Darren spent a month at the Occupy L.A. encampment. David Parks and Eve are heavily involved in Occupy Santa Rosa. All three live with mental disabilities. All are (or have been) homeless.
The stereotyping of people living with mental disabilities and homeless people during the Occupy encampments could have set our mutual liberation back for decades.  If it doesn’t, it will be due to a radically different story from those who came to the Occupy camps to protest and meet each other face to face.

My entry for this carnival is Corporate Control of People with Disabilities, which I posted at Occupy at Home (#OccupyatHome). I’ve been very pleased with the reception this post has gotten so far; the comments section is like reading a second post on the topic!

If you do not have a disability, it probably does not occur to you that you need permission from someone in authority to take a bus, to read a book, to go to the bathroom, to talk on the phone, to leave your house, to enter a public space. Corporate control over our lives in conjunction with government authority is not a shocking new concept; it is what we are used to. In fact, for some of us, it literally comes down to needing a doctor’s approval to take a shit.

An earlier post of mine, also at Occupy at Home (#OAH), is Occupiers: How Do/Will You Represent Me?

I frequently hear people say, “I, a person at an encampment, represent many people who aren’t here.” I appreciate the recognition that there are many of us who want to be there, but cannot. As someone whose disability causes me to be isolated and invisible to a great extent (partly due to the disabilities, themselves, and partly due to structural/societal ableism), it’s very important to me to be “counted.” For the same reason, I often feel uncomfortable when I hear that someone is representing me. I wonder how much these other occupiers really are representing my interests. Do they know what it’s like to live in a society where they are considered by many to be disposable — where, when someone with a disability is killed by their parent or caretaker, it’s considered justifiable, a mercy killing? Where their lives are viewed as a tragedy or a “human interest story” of inspiration?

Other Posts Pertaining to Disability and Occupy

I’m running out of time, space, and energy, so here are more links, all from Occupy at Home (#oah), which hopefully speak for themselves!

• Disability and Deaf Decolonize/Occupy Groups
• How to Support the Strike Even if You’re Unemployed/Disabled/Work from Home
• Disabled Raleigh Woman Arrested for Staying Seated: Take Action!

Thank you so much to everyone who contributed links for this blog carnival. Thank YOU for reading this. Please go to the posts, read, be enlightened, and give the bloggers some love in the comments section.

– Sharon, the muse of Gadget, and Barnum, SDiT (currently occupying his crate)

Extending Deadline for Occupy-Themed Disability Blog Carnival

Hello.

Earlier this month, I announced that the December theme for the disability blog carnival would be “disability and occupy,” and that I wanted submissions by tonight. Well, that’s still the theme, but between being unusually sick and unusually busy, I haven’t even written my own post yet, let alone started gathering the links for the carnival post.

Thus, I’m extending the deadline. I know a few of you want to write posts for this and haven’t yet, so I hope this will give you time. The deadline is extended till I publish the actual blog carnival! How’s that for vague?

Please spread the word! Share on Facebook, tweet, signal boost, etc. Thank you!

– Sharon, the muse of Gadget, and Barnum, SDiT

Disability Blog Carnival Call for Submissions: Disability & Occupy!

**UPDATE: Disability Blog Carnival #79 is now up! Lots of great links and blurbs on Occupy/#ows and disability. Please check it out!**

I’m very excited to be hosting the Disability Blog Carnival for December. This will be my first time hosting this carnival, though I have participated in it many times. It is one of my favorites!

Disability Blog Carnival Badge

Since there is so much going on in the world of Occupy and disability, the theme for this edition will be “Occupy.” You’re invited to write a new post based on this call for contributions or to send a link to a post you’ve already published that relates to this theme.

Here are some potential questions to get your mind whirring on this topic. These are just ideas; however, anything you want to write about Occupy that relates to disability is welcome!

• Are you involved in any way in Occupy? What draws you to the movement or repels/alienates you (or both)?
• Do your disabilities interfere with your ability to participate?
• Have you been involved, or attempted to be involved, in Occupy but been thwarted by inaccessibility, ableism, or audism?
• Do you think Occupy has a place for Deaf people and people with disabilities in general or you in particular?
• What do you think of media representations of people with disabilities and/or Deaf people in the Occupy movement?
• Do you think Deaf- or disability-related issues are being addressed by those in Occupy?
• What disability-related issue or issues do you think (or hope) the Occupy movement could get behind?
• How do you feel about the term “Occupy”? Do you use “Decolonize,” or another term?
• How do you feel the movement is doing with issues of intersectionality, such as race, disability, gender, and other members of the marginalized 99 percent? Where do people with disabilities rank among the 99 percent?
• Have you started or joined a disability-specific Occupy organization or group? Why? What are your goals?
• Are you a nondisabled Occupy activist or ally dealing with disability or access in some way?

Or anything else relating to the Occupy movement and disability. I’m wide open!

I’m happy to accept vlogs, as well as text blogs, as long as a captioned version and a transcript are also provided. If you want information on how to caption or transcribe your video, please contact me.

It would be great to see some new bloggers join in. The Disability Blog Carnival has a long and groovy history with many thought-provoking, moving, and/or galvanizing editions. I hope those of you who have participated before will do so again, and I hope those who have not taken part will be moved to do so this time.

As always, I encourage — but do not require! — those who submit links to make their blogs as accessible as possible to people with a wide range of disabilities. I just posted yesterday about how to remove Captcha from your blog if you are using “new Blogger.” You can also find links and info on blog accessibility at the bottom of the Assistance Dog Blog Carnival homepage.

The deadline for submissions is the night of Monday, December 26, midnight-ish of whatever time zone you’re in some time in the near future. It depends when I get the carnival up, but if you want to submit something and it’s not done yet, please do! You can also please contact me to let me know what you’re working on and when you think it might be done.

To submit your link, please comment on this post and include the following:

• Your name (as you want it to appear)
• Your blog’s name
• The title of your post
• The link (URL) for your post

I hope to post the carnival on Wednesday, December 28.

I look forward to reading your posts! Please spread the word!

– Sharon, the muse of Gadget, and Barnum, SDiT

PFAM: The Patients (and Impatients?) Have Spoken

For this edition of the Patients for a Moment (PFAM) blog carnival, I posed a question that gets to the heart of the carnival itself: its name. “Are you a patient?” I asked. “Which word(s) do you use to define yourself, and why?”

What intrigued me most about the bloggers’ responses was the combination of differences and similarities among them. Several took a contemplative turn, consulting dictionaries, teasing out complex meanings from the root of the word as well as its modern usage. Others jumped in with a more visceral and emotional response. Several take the reader on a journey, trying on a series of identities to determine which words fit and which don’t.

The overlap was as striking as the divergence. Each post contained a surprise. Sometimes it was the mood and tone, sometimes it was the interpretation of the question. Sometimes it was the ultimate answer at which the blogger arrived. I was surprised by how evenly split the answer was: four end up answering yes, they are patients, and three that they are not. However, everyone felt some pull in more than one direction. Internal conflict was a theme for most posts.

Wendy of Picnic with Ants grounded her post, Am I a Patient? in the definition(s) of the word, patient, before taking off on a flight of musings on diverse aspects of her identity. One section I found particularly sweet, funny, and revelatory was how her relationship with her husband has been affected by her illness, and how that relationship affects her identity:

I had a lot of trouble with my husband being my caregiver for a while.  I felt like I was no longer his wife, I was his patient. . . . Many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up.  He’s put in many suppositories, and every time I feel horrible about it, and I cry.  I often feel like we’ve changed, I’m now his patient.  But I’m more than that…

A family member also affected Genevieve’s perspective on thinking of herself as a patient. This blogger at Gonna Eat Worms grew up hearing the word “patient” in a very neutral, even positive, context because her father was a family doctor. Using gently self-mocking humor, in Becoming More Patient, Genevieve ponders whether this is the source of her comfort with the word, patient, or whether it is part of her healthy denial about her chronic condition:

Words are like little signposts with secret, private perceptions hanging on them; they never mean exactly the same thing to any two people and I have to be honest and admit that “patient” is not a trigger word or a sensitive word to me at all.

Rachel of Tales of Rachel also looks at her life from many angles before coming to a conclusion. Her post, The Patient, feels like a poem. In a few short, evocative, flowing lines, she lets us in and then makes her leap. I don’t want to quote an excerpt here because I think this post is like a delicious, ripe berry — it is best enjoyed fresh and whole, in one mouthful.

Megan of Objects in Mirror are Closer than They Appear also used the dictionary as her jumping-off-point for her post, Am I (a) patient? Her rich and layered examination of the subject from a linguistic, political, and personal perspective was a joy to read:

While I’m sure this kind of verbal gymnastics seems either basic or unnecessarily complicated to some people, it prevents us from reducing an individual into his or her most prominent—or visible—identity category.

Many bloggers indicated that this topic hit a nerve for them. (Wendy admitted she “stepped outside her comfort zone.”) For the remaining three bloggers, the nerve seems to have vibrated against being labeled as a patient.

Connie Rae posted here at After Gadget as a guest blogger. She interpreted the question in a way I never would have thought of. Her post, The Importance of Healing Language, focuses on the difference between a traditional Western medical perspective on health and healing, and the route she has taken to heal from back injury and chemical injury. Her preferred practitioners don’t even use the word, patient:

Many alternative practitioners call those they treat, “clients.” They give you a wellness plan and most clients don’t wait very long in the “reception” room (instead of “waiting room”). You also usually go in with pain and come out with a smile.

Phylor of Phylor’s Blog: chronic pain, life, and all that, says my question fueled “a rant” that she turns into “a call to arms.” I found the latter phrase to be more accurate in doing justice to the depth and passion of her post, When Am I a Patient? Phylor unleashes an energetic and invigorating honesty that defines patienthood as being tied to a loss of respect and control as a “chronic”:

We aren’t cranks, hypochondriacs, drug-seekers, or drama queens. We are people who have often at costs to our physical, spiritual, and emotional health tried to come to terms with our chronicness, be informed of the latest trends/discovers, and ask all the right questions.

Last is my own piece, carrying this ridiculously long title: What’s in a Name? Lymie, yes. Canary, yes, CFIDSer, yes. Patient no. I describe how I came to embrace and enjoy this carnival when I decided to share my discomfort with its name:

Given how often PFAM occurs, how much I enjoy blog carnivals, and the fact that PFAM is a chronic illness carnival, I thought to myself, “What is holding me back from getting more involved with this community?” The reason was staring me in the face: I don’t identify myself as a “patient.”

Thanks so much to the wonderful bloggers who contributed their time, energy, and brain cells to this very thought-provoking edition of PFAM. I enjoyed each piece. And thanks to you, the readers, without whom there wouldn’t be much point in posting! Please visit the links above and give these excellent bloggers some love in the comments.

The next issue of PFAM will be hosted by Sick Momma. Maybe I’ll see you there!

– Sharon, the muse of Gadget, and Barnum, SDiT

Both Carnivals Accepting Late Submissions: ADBC & PFAM

Assistance Dog Carnival Deadline Pushed Back

  Cyndy Otty at Gentle Wit has asked me to announce that, due to illness and to others’ requests to get posts in late, she has extended the Assistance Dog Blog Carnival deadline another week. So, if you want to write and submit a post on the topic of “Achievement” in relation to assistance dogs, you now have until October 31 to do so. (And if you wrote something that you’re not 100 percent thrilled with, as some of you have tweeted about, you now have time to meet your needs for perfectionism.) This is Cyndy’s call for entries. And here is the ADBC home page, answering all your burning ADBC-related questions.

I’m Patient about PFAM Entries

  I’ve also received two terrific PFAM entries from people who were “past the deadline” and a question from another about whether she’s too late to submit. Well, phooey on the deadline. This is a carnival “by, for, and about” people with chronic illness, so if we don’t understand about life/illness getting in the way of meeting deadlines, who the heck does? I haven’t even finished my own PFAM entry! So, if you haven’t submitted one because you think you’re too late, don’t fret. I’ll gleefully accept entries through 2:00 AM Eastern Time tonight of whatever time zone you’re in. (Or, you know, a few hours after that if you really need it.)

I’m thrilled with the thoughtful posts that have been generated by my question, “Are you a ‘patient’?” and deeply relieved and grateful that I am not facing a “silent” carnival (where nobody submits posts!). Keep ’em coming!

Also, if you have already submitted your post, first of all, thank you! Second of all, if you are interested in making your post more accessible to readers and commenters by Wednesday, you still have time to change settings or make edits, if you so wish. One simple step is to disable “word verification,” which presents a barrier to comments by blind readers as well as neurological and other disabilities. Find five relatively easy steps to make your blog or post more accessible here and more info on blog accessibility here.

In Conclusion . . .

If you have a submission for ADBC, post that at Gentle Wit.

If you have a submission for PFAM, post that in the comments below, or at the original call for subs.

Thanks, everyone!

– Sharon (@aftergadget), the muse of Gadget, and Barnum, SDiT

PFAM Announcement: Are You a “Patient”?

As I announced last month, I’m hosting the upcoming edition of the Patients for a Moment blog carnival! I hope you will participate!

I chose a topic that really goes to the heart of the matter — that takes on the name of the carnival itself! Here is the topic. You can tackle some or all of these related questions/issues:

What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not? If you live with a chronic illness, condition, or disability, do you refer to yourself as a “patient,” a “person with,” a “person living with,” a “person healing from,” or do you prefer to keep your disability or condition in the background? If you’re a medical professional or a family member or friend of someone with a chronic condition or disability, how to do you refer to them when speaking to others or blogging?

And of course, the most important issue is WHY do you choose the language you do?

The deadline for submissions is Sunday, October 23, by midnight of whatever time zone you’re in (-ish). While I definitely need most submissions in by Sunday in order to put the post together, I know it can be hard to meet deadlines when you’re ill. 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, October 26.

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!

By the way, if you are new to After Gadget, 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 my ADBC page. Thank you for your consideration!

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

– Sharon, the muse of Gadget, and Barnum, SDiT