Archive for the 'Social Justice' Category

Waspish Wednesday: Don’t “Let It Snow.” How Autoplays Can Disable Visitors to Your Website

Recently a friend of mine visited a blog she often visits. What she didn’t know was that the blogger had added a fun, temporary new feature to her blog. When my friend visited the blog, it triggered a seizure.

There are many different kinds of seizures, and every person experiences them differently, but some common aspects of seizures include inability to think, exhaustion, loss of bodily control, memory loss (during or around the seizure), and severe headache. Regardless of the specifics, having an electrical storm in your brain is not fun.

The seizure trigger in my friend’s case was WordPress’s “Let It Snow” feature, which is a feature that causes little white dots to float continuously down the screen soon after someone opens the blog. I believe people enable this feature on their blog because they think it’s fun — probably for them, and they assume, for most of their blog visitors. [Update: Actually, I have just learned that if you have the paid version of WordPress, it does this automatically in December. Blog owners need to opt out if they don't want it; I think this is a terrible system, and it should be an opt in. I plan to try to contact WordPress and ask them to change it.] They may do it to be festive, to enjoy the holiday season, to spread some cheer among their readers, or because they don’t know how to turn it off. I’m certain nobody uses this feature with the intention of causing distress to site visitors or with the intention of making their site inaccessible.

Autoplays Interfere with Access for Many People

The problem is larger than snow. And it doesn’t just affect people who are susceptible to seizures. Autoplays — any sound or movement that starts up automatically when someone opens an email or webpage — can interfere with internet usage for many, many people.

Examples of autoplays:

  • A music player that starts up automatically when someone visits your business site or .ning personal page
  • A video that starts playing when a visitor opens a news article
  • Animated GIFs (short clips of moving pictures or drawings) that you paste in the comments section of an online magazine
  • Graemlins or smileys in emails or on bulletin boards that bounce, flash, or change facial expressions

Examples of disabilities that are affected by autoplays:

  • Blindness, low vision, or other visual issues
  • Migraines and seizures (the first and fourth most common neurological disorders, respectively)
  • Sensory processing issues and various of other neurological issues
  • PTSD, panic attacks, and other conditions that cause a heightened startle responses

Recently, I tried to do some education on this topic in the comments section of a magazine where a video was on autoplay in an accompanying article. Some of the responses to my comment let me know that many people don’t understand how and why autoplays can be an issue for so many people. So, here are some details that I hope will answer lots of questions. (If I don’t address your question, please comment!)

Q: If someone has one of these problems, why don’t they just leave the page or turn off the video or music when it starts up?

A: Sometimes this is an option for people and sometimes it isn’t. In some cases, as soon as the computer screen flashes or the sounds start up, the computer user has a problem. My friend’s seizure was triggered before she could exit the page. The same can be true for migraines; I have had migraines triggered by music playing, by the WordPress snow, and by other moving or flashing things. Once the migraine or seizure starts, you’re stuck with it, regardless of what windows you close.

Some people (including me) may also experience sensory overload — causing disorientation, trouble thinking, or even panic — as soon as music comes on or a video plays or smileys bounce across the screen. This confusion and overwhelm can interfere with my ability to find the “off” button for the player or the tab to close the window or even the volume control for the computer. On more than one occasion — and I’ve heard this from others, too — I have had to hit my computer’s power button just to escape the sensory overload because I couldn’t figure out how else to make it stop. For people whose symptoms are severe when they unexpectedly encounter an autoplay, navigating the web can feel like a minefield.

Q: If the problems are so severe, couldn’t you prevent them by keeping your sound shut off or avoiding sites where videos play and things like that?

A: Some people keep their sound shut off, but this isn’t workable for everyone. I’ll go into more detail about that in my answer to the next question.

Avoidance of problematic pages isn’t always effective because you don’t always know where you will run into these issues. For example, I subscribe to several blogs that I enjoy, and most of the time they present no access issues for me. However, every year, suddenly, some of them are snowing. I like to be able to read these blogs — some of them are written by friends — so I don’t want to just stop subscribing to them. And it’s also not a workable solution for me to not read any blogs from Thanksgiving through New Year’s because I have a lousy sense of time and impaired memory. It is always a surprise to me when I open a blog that is normally fine and it suddenly starts snowing.

The other reason for not just avoiding sites that have these features (even if that was possible) is that, as is probably true for you (since you’re online), the internet is very important to me. In my case, the internet is my primary source of information, friendship, entertainment, communication, and work, and losing access to this is difficult. In particular, I’ve found that certain illness-specific communities (such as chronic illness forums on .ning and many illness boards) are very heavy on the bouncing smileys and autoplay music. When my neurological symptoms were particularly bad and I couldn’t tolerate unexpected sounds and movement, I stopped using them. Sadly, these were also my main sources of emotional support and medical tips for the very diseases that were causing these symptoms.

Relatedly, I like having my sound on for the same reason many people do: There are sounds my computer makes that I want to hear — sounds which I have enabled, in some cases. For example, when a new email arrives, or I get a private message or a relay call, my computer goes “Bing!” so I know to check messages or email. I also like to intentionally watch videos or listen to radio programs that interest me. I could theoretically turn my volume off and on all day long every time I opened a new page or tab on the internet, but that would be a real energy drain and pain in the butt, and also, I do sometimes try to do that, and there is one substantial drawback: because one of my neurologic issues is impaired memory, I often forget that I’ve turned my volume off. Then I miss message notifications, can’t understand why the volume isn’t working on a video, etc.

And then there are people for whom, if they turned off the sound, their computer would be unusable: screen reader (or text reader) users,* which includes many legally blind and virtually all totally blind computer users. Screen readers use audio output** (a computer “voice”) to tell the user what’s displayed on the screen, including the content (such as an article) and the navigation (such as links, headers, applications, descriptions, etc.). If you’re using a screen reader and suddenly music or a TV clip starts playing loudly at the same time, it interferes with your ability to read and can also make it difficult to navigate away from the page causing the interference! This is another example where “just turning off the music/video” is not a viable solution, because you might not be able to navigate to the “pause” button to turn it off.

While we’re on the subject of visual disabilities — just because someone is blind, it does not mean they won’t be affected by visual autoplays as well as sound autoplays. There are a lot of kinds of blindness, and not everyone who is blind is totally blind. For example, my friend whose seizure was triggered by the snow autoplay actually is functionally blind and uses a screen reader, but she has enough vision for her brain to undergo an electrical storm when it registers the flashes and movements on the screen.

Q: But a lot of people really LIKE music, videos, bouncing and flashing things, “Let It Snow,” etc.!

A: Yes, and I wouldn’t want to deprive people of that enjoyment, either! That’s why I think the best solution — one that can work for everyone, I believe — is to make such features contingent on the user activating them. In other words, if you have a visual art website and you think it will heighten visitors’ enjoyment to hear music that accentuates certain aspects of the art, set up your music player so that they can hit “play” IF they want to hear the music. If your article is about a funny video, use one of the many video players that allow people to hit “play” when they want to see the video. I see no reason why WordPress can’t add a widget that says, “Let it snow!” so that blog visitors who want “snow” while they read can activate the snow. Etcetera.

This is really, in my opinion, about consideration and consensuality. Just as websites with explicit sexual content have a warning screen or put “NSFW” (“not safe for work”) in post titles, and posts detailing violent or dehumanizing events include a trigger warning, it is only reasonable and kind to allow all users, whether disabled or not, to choose whether or not to have music blare, graphics bounce, or people shout from a video screen.

Three Simple Steps You Can Take to Make the Web More Accessible

1. When you set up your blog, website, magazine, or personal page on a forum, don’t use any autoplays. If you want videos or music to play, great — just make it optional. If you already have autoplays set up, remove or alter them so that visitors to your site have choice.

2. When you visit a website, blog, or forum that uses autoplays, ask the people who own or run the website to remove or alter them so that they can be used consensually. I think it’s most effective if you explain why they’re a problem for you or others and give examples. I also think such requests go over better if you make an effort to be courteous.

3. Share this post! Lots of people have no idea that autoplays can be problematic for others, often including friends and loved ones. I am certain that many people would opt not to use them if they knew there were alternatives that would provide greater access and well-being to many of their site visitors.

I welcome your comments!

- Sharon and Barnum, SD

P.S. If you want to learn more about creating accessible sites, here’s an article about five easy steps to increase access, and here’s a more comprehensive one I wrote that includes reference to colors, flashing, sound, etc.

*Screen readers may also be used by people with print disabilities such as learning disabilities.

**Some screen reader users, which includes some Deafblind people, might use a Braille output instead of or alternating with an audio output.

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

Signal Boost: Growing Compassion

Howdy!

I’ve posted before about how I’m study NVC (Nonviolent Communication, also known as Compassionate Communication) and how important it’s been for me. I actually see a lot of similarities in philosophy between clicker training and NVC, and I keep intending to write some posts on that topic, but I haven’t managed it yet.

Anyway, I got very involved in helping the organizer of an upcoming NVC telesummit, and now I’m really hoping some of my friends, readers, and others will want to attend because it looks like it will be an awesome event and it’s really fun to be on the phone with friends or people I know from online. It’s very accessible, too, for anyone who can use the phone (more about this at the bottom in my postscript).

For those who might want to participate in the calls — you do not have to know anything about NVC or have any experience with it. In fact, this is a great opportunity for people who haven’t studied NVC to learn from some of the most experienced and respected people in the field and get a large sampling of perspectives on a single topic: compassion.

BayNVC’s new telesummit is begining September 3rd. It’s called “Growing Compassion: Building on Interdependence.”

This month-long telesummit — available globally by telephone — will be led by 21 of the most exciting NVC trainers in the field. Each trainer will be sharing their wisdom of years of accumulated experience in compassionate communication and open-hearted connection.

Registration is open now. The Growing Compassion telesummit starts September 3. Not only will you be able to attend as many (or as few) calls as you want, but you will also receive recordings of all 20 calls! More information about this powerful and transformative event is below and here.

NEW BayNVC Telesummit – Registration Now Open!

Growing Compassion: Building on Interdependence

If you want to experience the spark of global community forged by shared learning and compassion, join us!

Program Highlights

  • Opening Call: Practices for Opening our Hearts. BayNVC founder Miki Kashtan will offer  tips based on her decades of study and work with thousands of people.
  • 9/11 “Enemy Image” Call: During conflict, we often lose connection with the other person and see them only as a villain. Lisa Montana shows how the Enemy Image Process offers a simple way to defuse this dynamic, get support, and open the door to solutions that meet everybody’s needs.
  • Zen Wisdom for Naturalizing your Practice: Are you interested in ways to actually practice NVC out in the world, with natural language? Coming from his perspective of Zen Buddhism, Jesse Wiens answers the question, “How can I get off the cushion and out into the world and make a difference?”
  • Calls offered in French, Spanish, and Hebrew – open to ALL. Marshall Rosenberg, author of Nonviolent Communication: A Language of Life, says about empathy, “It’s not the words!” Practice “wordless empathy” by experiencing the humanity of a person who speaks a different language than you do. Experience a heart-to-heart, personal connection which transcends words!

Dates and Times

All calls take place Monday through Friday, Noon to 1 PM Pacific Time (3 PM to 4 PM Eastern Time). Schedule of dates and trainers below. After registration, your call-in number, PIN, and further details about each call will be emailed to you!

Schedule: Presenters and Topics

Week 1 (September 3-7)

  • Monday: Miki Kashtan – Practices for Opening our hearts
  • Tuesday: Jesse Wiens – Out of the Workshop and into the World: Zen wisdom for “naturalizing” your NVC practice
  • Wednesday: Alan Seid – Supporting Compassionate Actions of Social Change Agents : Sharing tools, skills, and coaching for maximizing positive impact in our world.
  • Thursday: Meganwind Eoyang – Transforming Self Judgments
  • Friday: Catherine Cadden – Empathy First Responder

Week 2 (September 10-14)

  • Monday: Carol Chase – Compassion in the Face of Adversity
  • Tuesday: Lisa Montana – Enemy Image Process
  • Wednesday: Nancy Kahn – A Commitment to Self-Compassion in Our Social Justice Work Across Race, Class and Ethnicity Divides
  • Thursday: Arnina Kashtan – Falling in Love with My Judgments: Why I cherish judgments and how they teach me true compassion towards myself and others
  • Friday: Myra Walden (in Spanish) – Cariño a Mí Mismo: Calidez hacia Los Demás (Increasing Self-Love: Warmth towards Others)

Week 3 (September 17-21)

  • Monday: Mitsiko Miller (in French) – Communiquer de Coeur à Coeur avec Nos Enfants (Communicating Heart-to-Heart with Our Children)
  • Tuesday: Newt Bailey – The Compassion Switch: Finding and flipping on the compassion switch
  • Wednesday: Bob Wentworth – Finding Tenderness For What You Can’t Stand About Yourself
  • Thursday: Roxy Manning – Authentic Dialogues: Growing compassion across sociocultural differences
  • Friday: Aya Caspi (in Hebrew) – Meeting the challenge of opening our hearts to our loved ones (including self)

Week 4 (September 24-28)

  • Monday: Kate Raffin – Flowers, Tears, and Lightbulbs: Balancing my yearning to grow with acceptance of who I am right now
  • Tuesday: Selene Aitken – Your Adult Children and You: The dance of connection
  • Wednesday: Mair Alight – Self-Empathy Core Competency- Practicing with  Wisdom Circles
  • Thursday: Roberta Wall – Growing Compassion at the Checkpoints between Israel and Palestine: Empowerment or Submission?
  • Friday: Inbal Kashtan & Kathy Simon – Truth and Dare: Nurturing authentic, courageous relationships.

Join Us in Co-Creating World Peace through Compassion


Cost:
This is a continuing effort to financially support BayNVC. Requested contribution: $60 (includes recordings of all calls). If you are living in the Global South or your financial circumstances preclude your participation, please email Mair Alight so that you can be included in this event.

- Sharon and Barnum, SD/SDiT

P.S. About various access issues:

I attended a much more intensive telesummit in July that was life-changing. I was so grateful I was able to attend 17 calls (!!) even though I was very sick. The trainers and most of the participants, too, were totally accepting and inclusive around my disability issues. For the previous teleconference when I was experiencing spasmodic dysphonia, sometimes I used TTY relay, sometimes speech-to-speech relay, and sometimes people understood me well enough without relay. I loved the diversity of the people and topics under a unifying theme. I felt accepted and my disabilities were treated as normal, overall. Some of my friends from my chronic illness/disability NVC classes attended, too. (Because it’s a teleconference, I think this event is not accessible to people who are D/deaf.)

If you have difficulty attending events or classes in the flesh, due to your disabilities, location, or schedule, doing them by phone can be great. Also, it’s just an hour a day, which I find much easier than something long (which tends to drain me). Plus, you can go to as many or as few as you’d like, and you can listen to whichever of them afterward as often as you like, whether you attend or not. Also, there’s usually a pretty good mix of listening and participating, though nobody is ever forced to do anything, and my experience is one of a great deal of acceptance of whatever you’re feeling or needing.

There is also a commitment to financial access. The requested contribution (this is a fundraiser for BayNVC — many trainers are donating their time) is $60, which is for 20 calls and the recordings of all the calls. That is a pretty amazing bargain — $3 per call, not including the recordings. HOWEVER, I know many people with disabilities are struggling to get by and simply do not have $60. So, if you’ve read the info above and are thinking, “This sounds really amazing. I so wish I could go, but I don’t have $60,” please email the organizer, Mair at Mair@baynvc.org and ask her if you could attend for a contribution that you CAN afford (from $1-$59 sliding scale). She really wants it to be inclusive (and so do I, of course).

Would you like to help me out in my efforts to increase peace in the world? If so, I’d greatly appreciate any of the following actions on your part:

  • Sharing this post with friends, family, colleagues, and others who might want to learn about, or deepen, an NVC practice or learn about growing compassion.
  • Sharing this post or this link via social networking, including Twitter, Facebook, Google+, LinkedIn, etc., and encouraging friends and followers to register.
  • Gifting the telesummit to someone you believe would enjoy and benefit from it. Whether you can attend or not, you can give the gift of NVC to friends, colleagues, or loved ones by registering them for this event!

Details about the Growing Compassion telesummit are on the BayNVC website. It start soon — September 3 — so your help in getting the word out now is greatly appreciated!

Public Comments to the National Council on Disability

I was asked by Mary Lamielle of the National Center for Environmental Health Strategies (NCEHS) to call in with testimony to the National Council on Disability (NCD) during their public comment period today, Thursday, July 26.

What is NCD?

NCD is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Senate-confirmed Presidential appointees, an Executive Director appointed by the Chairman, and eleven, full-time professional staff.

In its invitation for public comment, NCD noted:

NCD will accept statements on any topic but is particularly interested in discovering what the public believes should be included in NCD’s 2013 statutorily mandated Progress Report to the President and Congress. Individuals interested in submitting public comments may do so in-person or by phone and should provide their names, organizational affiliations, if any, and limit comments to three minutes. Individuals may also submit public comments in writing to PublicComment@ncd.gov using the subject “Public Comment.”

Mary had previously emailed me to ask me to sign on to the recommendations she was circulating in the disability and multiple chemical sensitivity (MCS) community for the NCD’s meeting. These recommendations, which I support, are as follows:

1. The NCD should play an active role in organizing and participating in an Interagency Committee on Chemical Sensitivities;
2. The NCD should examine the significant levels of harassment and discrimination experienced by those with chemical and electrical sensitivities in housing, employment, education, healthcare, medical services, and daily life;
3. The NCD should support federal research on chemical and electrical sensitivities;
4. The NCD should adopt the CDC Fragrance-Free Policy;
5. The NCD should adopt a fragrance-free and healthy, accessible meeting policy similar to that of the Access Board; the NCD should also adopt a policy to limit exposure to electrical devices and frequencies at NCD meetings; and
6. The NCD should support the addition of a Board member with expertise on chemical and electrical sensitivities.

Here is what I will be saying in my public comment by telephone later this afternoon:

My name is Sharon Wachsler. I have multiple disabilities, and I’ve found that not all my disabilities are treated equally even within the disability community. I’m generally able to use my service dog, my powerchair, and a sign language interpreter or the relay without any problems. But when it comes to my access needs stemming from multiple chemical sensitivity, there are always problems. Every year I had to fight my CIL to get a fragrance-free nurse for my annual PCA evaluation. There are no hospitals or doctor’s, speech-language pathologist’s, psychotherapist’s, or CIL offices accessible to me.

I have a close friend who is Deafblind and a lifelong wheelchair user. She has told me on many occasions that having MCS is the worst of her disabilities. She has given up trying to work with case managers, assistive tech providers, and other disability organizations because they do not listen or abide by her needs for products and services that won’t make her severely ill and cause her other disabilities to worsen.

When we had an ice storm in Massachusetts in December 2008, and I had no heat, power, water, or phone for a week, I couldn’t be evacuated; there were no MCS-accessible shelters. Two friends who have MCS were also stranded. One of them suffered hypothermia. The other ended up in the hospital which caused such damage to her health that she was in chronic respiratory arrest for two years afterwards.

Just last week a woman with MCS called me about trouble getting workplace accommodations. I referred her to the DOJ ADA hotline. She said she’d already called and been told, “That’s not an ADA issue. It’s a building maintenance issue.” How many other people with MCS have called the hotline and been told that their access needs aren’t real?

I have stories like this for every day of the year. It is for these reasons that I urge you to implement the six recommendations proposed by Mary Lamielle of the National Center for Environmental Health Strategies.

We are not separate from you. We are a part of the disability community. Our needs must be heard, respected, and accommodated.

If you would like to support the efforts of the MCS community to have our issues included by NCD, please email your comments to PublicComment@ncd.gov and put “Public Comment” in the subject line. Please also send a copy of your comments to marylamielle@ncehs.org. They’re accepting public comments by phone on Thursday and Friday, but if you can’t get your comment email sent by Friday, just send it when you’re able.

If you’re not sure what to say, you can talk about your experience with MCS or electrical sensitivity or that of friends, family members, colleagues — or me! No matter what you say — even if you say nothing else — you can copy in the six recommendations of NCEHS above and indicate your support of them.

Thank you very much for your support!

- Sharon, the muse of Gadget (who had chemical sensitivities), and Barnum SD/SDiT (and blessedly healthy so far)

Just Like Mall Wart, except…. [Updated]

Bumper sticker with dark blue letters on white background, type face the same as Wal-Mart's. Says Mall Wart, Your source for cheap plastic crap.

It's a good beginning.

My PCA used to have many excellent, snark-intensive bumper stickers on her truck. This was one of my favorites. However, I don’t think it’s entirely fair. It’s a little misleading.

It really should say, “Mall-Wart: Your source for cheap plastic crap, which also

  • Uses slave labor in other countries for outsourced goods
  • Violates the Clean Water Act in multiple US states and otherwise engages in practices egregiously harmful to the environment and dangerous to the consumer
  • Exploits its workers
  • Busts unions
  • Systematically and intentionally puts small businesses out of work
  • Participate in racist employment practices
  • Has been sued repeatedly for Americans with Disabilities Act violations, such as not allowing people with disabilities accompanied by assistance dogs into their stores
  • Is owned by people who each make over $18 billion annually, lobby conservative elected officials, but donate less than one percent of their income to charity.” (By comparison, Bill Gates donates over 50 percent of his income to charity.)

But that would make for a really, really long bumper sticker, don’tcha think?

Anyway, why, you may wonder, am I writing a totally random post about Wal-Mart? Well, partly it’s because it’s evil, and I like to raise awareness about the depth, breadth, and sprawl of their evilness. You’d be hard-pressed to find any form of despicable activity — human rights abuses, animal rights abuses, environmental destruction, trade practices bad for US interests, etc. — that they don’t participate in. Where am I getting these facts? From this extremely long list of facts and their sources about Wal-Mart’s illegal and unethical practices. (Except for the ADA and service dog stuff; I just know about that from my involvement with disability rights activism.)

You can learn all this and more, in entertaining, heart-breaking detail, by watching the documentary: Wal-Mart: The High Cost of Low Price on a DVD that you rent or purchase, or for free online!

So, back to the reason I’m writing this now. The reason is that I have been promoting the auction that I have helped organize, Marlena’s Teaching Fund, and it’s down to its last 30 hours or so. We are having a big sale to try to get as much donated as possible when this comes down tomorrow at midnight.

Thus, I have slashed prices! I have encouraged people to spend! And bargain-hunt! And obtain!

I have been relentlessly posting on Facebook and Tweet-spamming, such that I think everyone will unfollow or unfriend or block me. And I’m talking about how many, many items and services are still available, and how “there’s something for everyone,” that I was thinking, “My God, I’ve turned into some sort of Mall-Wart-esque monster!” Aieee!

But then, I remembered, no.

For one thing, this little shindig is actually an offering of gifts by people who want to contribute to someone’s (or a group of someones’) well-being. And much of this stuff is stuff that people have but don’t want or need, so it’s being repurposed, recycled, not going into the landfill. And a lot of this stuff was handcrafted, by people who did it with love, not sweatshop labor.

Actually, I have learned a lot from this experience. I have gotten the opportunity to connect with and meet some really awesome people. I think it has served many useful purposes and contributed to meeting the needs of many people. So, overall, I’m very glad of my involvement.

I am not Mall-Wart. I am still me. And hopefully Betsy will help me create a spreadsheet so my head doesn’t explode when I try to match item donors, winner bidders, mailing addresses, donations made or to be expected, etc., when this all comes down tomorrow. (Or maybe I’ll just crawl into Barnum’s crate and put my head in my arms and rock myself and hope that people will telepathically figure out who to contact and what to mail, etc.)

Or maybe one of you reading this is good at spreadsheets and has some spare time in the next day or two? Heh heh heh heeeeeeeeeeeee. . . ?

So, I guess this is a request for help, which really was not my intention when I started this post, but there it is — life takes you in unexpected directions, and for me, these directions are often found while blogging. My requests:

1. If you have bid on the auction and won one or more items, starting Sunday night or Monday morning, please check your email (including spam folder) and/or your blog comments — or whatever you gave for your contact info — or contact me yourself, because I have already not heard from two people I’ve tried to contact where there were questions about their bidding, and I feel quite anxious about not being able to connect to everyone who bid.

2. If you know of anyone who has bid, please pass along the note above, in case you have more reachable contact info for them than I do.

3. If you haven’t bid on anything, go check it out. There really is some amazingly cool stuff there, and some unbelievable bargains. I really did go and mark everything down that had not yet been bid on.

4. If you bid on stuff, check to see if you were outbid. If you were, and you want whatever that stuff was, bid it up.

5. If you are in any way able to help me with the adding up of sums or creation of spreadsheets or email of people who donated items or made winning bids, please contact me! (If you know my phone number or email, use that. Otherwise you can use this private form.)

Finally, to paraphrase Trillian from that most remarkable book, The Hitchikers Guide to the Galaxy, “[This blog] will be restoring normality as soon as we are sure what is normal anyway. Thank you.”

- Sharon, the muse of Gadget, and Barnum, SD/SDiT (We have some cool training stories to share; I just haven’t yet finished any of the blogs I’ve started recently.)

UPDATE: The kind and talented Kat of Join the Club! created a google docs form/database/embeddable thingy which we think I’ll be able to have winning bidders fill out with their contact info. This will make my job MUCH easier (if it works). So, some help has already been given, and I am very grateful!

Seeking Auction Donations

I’ve written occasionally here and at my other blogs about my study of Nonviolent Communication (NVC) for the last year-and-a-half. I’ve written here about NVC being the major factor in being able to grieve Gadget, and spending the Jewish New Year with my NVC friends, and on how NVC has changed how I communicate about grief. I’ve blogged about it much less than I have wanted to, however. Partly, this is for the usual reasons I blog less about everything than I want or expect to — I’m sick, I’m training my own service dog, I trying to write when able.

But there are other reasons. One is that since that life-changing international NVC phone call at the beginning of October, I am trying to attend as many NVC practice groups and classes as I can. (Note: Whenever I refer to attending NVC classes, they are always by telephone — conference calls.) Although this has absorbed energy — the time spent on the calls and then the time recovering — they give me so much. I feel a new sense of peace, calm, and happiness and an ability to have compassion for myself and others that I didn’t have before.

I actually had wanted to take NVC classes several years ago, but they were offered in a space that was up a flight of stairs and not MCS-accessible. Then I found an NVC teacher who has created an option for NVC classes that are financially and physically, mentally, and emotionally accessible to people with disabilities.

Meet Marlena

The person most responsible for this change in my life is my NVC teacher, Marlena Willis. Marlena lives with both mental health disabilities and physical disabilities, including MCS. A couple of years ago, she decided to offer NVC teleclasses to people with chronic illnesses and disabilities. We became a tight-knit community, most of us living with multiple disabilities, often homebound, and struggling with very difficult situations.

Read what Marlena’s students say about how her classes have changed our lives.

Because she wanted to make sure that anyone who wanted to learn could attend, Marlena offered the classes on a sliding scale and said that nobody would be turned away for lack of funds. Most of us have been able to pay little — much, much less than what Marlena’s time and skill are worth to us — and some have been unable to spare anything for tuition.

Marlena laying on her back in bed. A black-and-tan short-haired large-breed older puppy -- maybe part Doberman or Rottweiler -- wearing a pink collar is licking her from her chin to her eyebrow. Marlena's eyes are closed and her hand rests on the dog's chest.

Marlena's dog loves her as much as her students do!

In the last few months, Marlena has entered financial crisis. This was the result of several unexpected medical expenses not covered by Medicare or MediCal, plus the unexpected expenses of her rescued dog and cat, who are very important to her mental health. For this reason, Marlena’s students are doing a fundraiser for her, which I’m organizing. We are doing it as an online auction. I would so much appreciate your help in making Marlena’s Teaching Fund auction a success so that Marlena can get the dental work done that she needs and continue to teach the NVC classes that mean so much to me and my dear friends.

Find out more about Marlena (my interview with her) here.

If you would enjoy contributing to the success of the auction, here are some ways to help!

  • Donate an item to auction. This is the most useful and important thing we need right now. It can be any item, product, or service that someone else would enjoy. Even if you think you don’t have much to offer, you probably do! I have more notes about this below. Please keep reading!
  • Spread the word! Follow me on Twitter at @aftergadget and retweet my auction-related tweets, or share my posts on your Facebook page.
  • Ask friends, family, social or business networks to donate an item. Do you know someone who has a business, either online, like an etsy shop, or anything else, who would appreciate some publicity while giving something small that will make a big difference in someone’s life? Ask them to donate a service or item.
  • “Like” the Marlena’s Teaching Fund Facebook page! Before the auction starts, we can use it to organize and gather info on items to be auctioned. When the fundraiser is underway, we’ll use it to post updates or feature certain items or list quotes from how Marlena has changed lives.
  • Link to this post. Offer a signal boost. You also have my permission to cross-post this post as long as you attribute it to me and link back here. And you’ll probably want to write some sort of introduction so people know you’re not me!

What Items Can Be Auctioned?

All sorts of things! They can be tangible goods or they can be services. Below are some categories of things we can really use.

  • Unique or beautiful things: Jewelry, photos, artwork, hand-crafted items, specialty or homemade foods (that travel well), films, music, or books donated and signed by the artist/author, tickets to sports/theater/exhibits.
  • Useful things: Dog or cat toys or products, clothing, housewares (kitchen, bath, bed, etc.), hair combs or sticks, hobby/recreation stuff (knitting, crocheting, photography, games, gardening), posters, cards, gift certificates for anything/anywhere! (Did you get something for your birthday or the holidays that’s perfectly good, but that you just can’t use?)
  • Items of interest to ill or disabled people: Unopened supplement bottles, books on living with chronic illness, disability culture or humor, massage or body work, meditation or yoga instruction (live or on CD or DVD), assistance dog gear or lifestyle stuff, videos educating others about your illness or disability rights.
  • Items of interest to NVC people: NVC books, CDs, or DVDs; BayNVC merchandise; giraffe things (puppets, ears, jewelry, prints, bags, decor); empathy session; coupon/gift certificate for a free workshop or class.
  • Services: The sky is the limit! If you have a skill or passion, chances are someone is interested in learning from you or taking you up on your talents. Editing/proofreading; writing; graphic design; cupcake decoration; astrology; Tarot reading; NVC empathy session; dog training (in person or by Skype); photographing your pet or food styling; bicycle, wheelchair, or car repair or maintenance skills; counseling; gluten-free cooking; life coaching; blogging; how to write a synopsis or query letter or create a portfolio; animal communicating; a or presentation on creating access or what it’s like to live with your illness or to be partnered with a guide dog. You can specify if this is something that can be done by phone, internet, or in person. If you have an idea, bring it, and I bet we can make it happen!

Things to Keep in Mind

  • The purpose of this auction is to help Marlena and allow her to continue teaching NVC to people who really benefit from it and would otherwise not to be able to access it. However, if you have any sort of business — an online store, a consulting business, teaching, etc. — this is also a way to let more people know about you, your services, or your products. All listings of donated items will link to the donor’s website and include their logo or image and a blurb about what they offer. It’s part of our way of saying, “Thank you.”
  • Unless they are antiques or collectibles, tangible items (products, goods) must be in new or like-new condition.
  • Tangible items will be shipped. Whoever donates the item will also be donating the shipping. So, if you’re choosing between sending something heavy or bulky (like a big, hardcover book) or something lightweight (like a silver necklace), you probably want to choose the small, lightweight thing. You’re free to choosing the easiest, most inexpensive shipping option you like; we are not FedEx!
  • Services have many advantages: 1. There is no shipping cost involved. 2. If it’s something you can offer by phone or internet, this usually means it can be bid on internationally. 3. If it’s something you can offer to a group (a workshop or class), we can take several winning bids on one item.
  • If your service or product can only be offered to those in your local area, please indicate the area (e.g., open to bidders in the SF Bay area only, or open to those in NYC only, etc.).

If you would like to donate an item (product or service) to Marlena’s Teaching Fund, here’s what to do:

Contact me as soon as possible to let me know you’re donating something. Please include as much of the following information as possible:
1. A description, which can include things such as materials, size, weight, number, handmade, etc. (Unless I can lift this from your website or a mass-market site, like Amazon.)

2. Any background on you or your product that makes it more appealing (or, again, if this is on your website, let me know, and I’ll get it from there).

3. Your website, shop, blog, Facebook page that is associated with your donated service or product.

4. An image to accompany the description (unless it’s something I can lift from your website or from Amazon, etc.). If it’s a product, send a picture. If it’s a service, your logo or a picture of yourself or something is great. If you are willing to include a text description of your image, that will save me a lot of energy on adding alt tags, but it’s fine if you don’t.

5. The retail value of the item (unless I can find that online). If it’s a one-of-a-kind that doesn’t have a retail value, just take a guess.

6. Whether there are geographical restrictions on who can bid (in USA only, in Canada only, in North America only, in your city only, anywhere in the world, etc.).

7. If this is a tangible item, if you know whether it’s coming from an environment that is smoke-free, or fragrance-free, or pet-free, please indicate this (it doesn’t have to be all three, e.g., if it’s coming from your smoke-free, pet-free home, say so; if it’s coming from your fragrance-free home, say that. If you don’t know what it’s been exposed to, leave this out).

NOTE: If you know you want to donate something, please contact me as soon as possible so I can start a listing — even if you don’t have all the information yet. You can get the rest to me as you are able.

The auction is scheduled to go up Friday, MARCH 9, so I’ll need all item listings by Sunday, MARCH 4 at the latest.

How to get your information to me:

Thank you so much for your support!

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

P.S. If you use email to contact me and don’t hear back within 24 hours, it probably means your message went into my spam folder. Please try again, preferably using one of the other contact methods.

Disability & Occupy: Disability Blog Carnival #79

Disability Blog Carnival badge by Ryn, featuring a black-and-white photograph of a man and a boy. The man is in uniform and holding crutches; he is apparently an amputee; the boy is holding onto one of the crutches as a child might hold an adult's hand; the two are photographed from behind, and we see beyond them a seashore and a suspension.bridge

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.

Black and white picture of a middle-aged white woman with short dirty-blond hair. She is wearing a white, sleeveless shirt and holding up a sign that says, "I have a Master's Degree, Systemic Lupus, Two Kids Entering College in Fall, and Less than $20 to my Name. I am the 99%.

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!

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)

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 logo by Ryn, featuring a black-and-white photograph of a man and a boy. The man is in uniform and holding crutches; he is apparently an amputee; the boy is holding onto one of the crutches as a child might hold an adult's hand; the two are photographed from behind, and we see beyond them a seashore and a suspension.bridge

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

We Interrupt this Blog Cuz We’ve Been #Occupied at Home

My blogging friend and fellow chronically ill gal, The Fibrochondriac, recently wrote to me to tell me that I had helped inspire her to get involved in #OccupyTriCities. I will post about that another time, because what she said really blew me away.

It also changed my perspective. Reading her posts about what she was doing, despite her chronic illness, inspired me. (Really, check out this post, especially.)

I have been so excited by the growing Occupy Wall Street and then worldwide #Occupy movement, but also sad that I could not take part. I have felt like finally, the change I have been hoping for since Ronald Reagan got into office (yes, I’m old), is starting to happen! And I can’t do anything about it!

But no, I’ve decided I can do something. There are lots of things people who cannot go #Occupy in an embodied way can do. So I have been trying to gather momentum for #Occupy at Home.

Thus, I’ll be blogging, tweeting, and posting to Facebook from a new address and identity.

Blog: #Occupy at Home

Facebook: #Occupy at Home (please go “Like” the page so it will become searchable)

Twitter: @Occupy_at_Home

Will you to join me? I love that this is a leaderless movement, and the #Occupy at Home movement should be, too. If you would like to be an admin for the Facebook page or write for the blog or anything else, please, please, join in! The more minds, hearts, and bodies involved, the truer it will be to the movement. Also, it is too much work for one person; that’s why numbers count, even for those at home, alone. Because we are not truly alone. We have each other.

I don’t think I’ll be here at After Gadget much for a while. Even I can only do seven or eight million things at once. (Especially if I don’t eat or sleep! And then, I can only do one thing at once: Breathe. And maybe whine.)

Lots of great stuff coming up about disability, chronic illness, the #Occupy movement. For example, I’m putting together a post for the General Strike on Wednesday, November 2. “What?” You say. “How can someone who doesn’t work, who is on SSDI or SSI or worker’s comp take part in the General Strike?” Well, we can!

Join me at #Occupy at Home and find out!

- Sharon, the muse of Gadget, and Barnum, SDiT-on-holiday

Waspish Wednesday: Yes, Lyme DID Cause This

Wow, I have managed to keep on schedule and get out a Waspish Wednesday post every week for three weeks! It’s so unlike me to be able to maintain a regular publishing schedule. Go, me!

This is another Lyme-related post in honor of Lyme Disease Awareness Month. This tells the oh-so-bittersweet story of how I was recently able to go back to one of the doctors who told me I didn’t have Lyme and say, in effect, “You were wrong!”

It also is kind of a sequel to my first Waspish Wednesday post, wherein I discussed a certain doctor whom I strongly dislike.

There are many reasons I dislike this doctor: That he has absolutely forbidden me access with my service dogs and failed to provide other reasonable accommodation in their place; that he thinks his office is MCS- and wheelchair-accessible, when it is neither; that he does not provide American Sign Language interpreters to Deaf patients who require them, despite the fact that it’s the law; that he is smarmy and pompous and condescending; that he once suggested my cognitive impairment (brain damage) which is well documented, was caused by “watching too much TV.” You get the idea.

However, perhaps his most egregious sin was the way he treated me when I was so severely ill with Lyme disease and coinfections that I was probably dying.

I’ve written about my Lyme story before, but in a nutshell, here’s what happened:

I was bitten by a tick, and a few weeks later developed classic signs of acute Lyme disease. I was put on antibiotics; I improved, but did not get better. Eventually, I got much, much worse, until I couldn’t speak or move my limbs, was in excruciating pain all the time, had dozens of other symptoms, and was unable to leave my bed. This doctor was supposedly a Lyme-literate physician (LLMD), which means that, unlike most doctors, he knew about coinfections and “believed in” chronic Lyme, etcetera.

I went to see him, with a friend interpreting for me (because, remember, he doesn’t pay for ASL interpreters), and he was so rattled by how sick I was that he could barely stand to be in the same room with me. He said, “I don’t know what this is, but it isn’t Lyme. Lyme can’t do this. You need to find a doctor who can diagnose and treat you, and then come back, and I can help you.”

Then he got me out of his office so fast, you’d have thought I was a pile of shit on fire.

He wasn’t the only “unhelpful” doctor I dealt with. Some doctors refused to see me at all, just because I had Lyme. Others said they didn’t know what was wrong, and/or thought I didn’t have Lyme because my tests were negative. Still others did believe I had Lyme but didn’t want to take on my case because I was so sick, they were afraid they couldn’t provide adequate care.

However, none of these other doctors advertised themselves as Lyme specialists, then told me I didn’t have Lyme because “Lyme can’t do this.” No other physician told me that after another doctor diagnosed and treated me, he could help me. (What was he planning to do for me, exactly? Sing “Kumbaya”?)

Now, three years later, I’ve been definitively diagnosed with Lyme disease, babesia, and bartonella, and have been on aggressive antibiotic and antiparasitic treatment. Most of the time, I can speak. Most of the time I can sit up, move my limbs, brush my own teeth, do limited walking inside my house, and all sorts of other things I couldn’t do when I was being refused treatment because “Lyme can’t do that.”

So, two weeks ago, I went to see this doctor because he’s the only specialist in this region for another condition I have, and I was told if I didn’t have an appointment, they’d withhold treatment.

I started our appointment by refreshing his memory about the state I was in when last I saw him. Then I said, “Remember how you said, ‘Lyme can’t cause this’? Well, it turns out that Lyme did cause that. I got tested again in October 2008, and I was positive for Lyme and babesia.”

He expressed moderate surprise and requested copies of the labwork. I knew he would do that. I hadn’t brought it. He asked me to fax them to him. I said I would, but I probably won’t.

He did not say, “Wow, I really blew it on that one. I’m so glad that after nine months of multiple infections digging deeper into your organs and central nervous system, you got treatment. I have learned my lesson and will treat severe Lyme cases much differently in the future.”

Not that I expected it.

A lot of other annoying things happened, which I won’t go into, and then he asked me who was treating me for Lyme. I told him, and he asked me to please pass along his kind regards, as he thinks very highly of my treating doctor.

“Yes,” I said. “I think Dr. ___  saved my life.”

Either he didn’t hear me say that or he pretended not to. I don’t know if he caught the implication that he essentially left me to die.

Then, he yanked the plug on the only treatment I’d been getting from him — the entire reason I schlepped my tired ass to his office after avoiding him for over three years — and I left.

I don’t know if anything I said penetrated his thick armor of smugness, but for the sake of the next Lyme patient who enters his office, I sure as hell hope so.

I don’t know why he’s unable to say a mea culpa. Maybe he has some sort of brain injury that interferes with his “guilt processing center.” If so, it’s probably caused by not watching enough TV.

- Sharon, the muse of Gadget (I got stung by a bee waiting outside his office because he wouldn’t let me in!), and Barnum, SDiT?


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