Archive for the 'Access/Accessibililty' 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.

Update: Free Empathy Call, Online Chat & Webcam Chat Details – Oct. 1&2

This is an update to my previous post. If you want to read the details of my personal experience with the call last year, check it out.

A globe brightly covered with the colorful flags of all nations and people that look like paper dolls standing in a circle around the globe holding hands. The 12 people are each a different shade of the rainbow, from red to purple.

Global Connection

However, if you simply want to learn the nitty-gritty of how to attend the call or one of the online events for the United Nation’s International Day of Nonviolence in honor of Gandhi’s birthday, here it is:

In case this was clear before, this is a FREE call. Twenty-four hours of continuous empathy are available to give, receive, or witness. If you would enjoy making a small donation in appreciation of our organizing efforts, we will happily accept, but the point of the call is to make it available to everyone (as someone said to me recently) “as a love offering.” That’s what it is! Free love! It’s priceless. <wink, wink>

Every two hours a different facilitator, or team of facilitators, will be hosting — bringing their own perspectives and experiences to the call. Note: For technical reasons the 24-hour period has been broken up into six (6) four-hour “sessions,” but you can call in (or leave) any time during any “session.”

The call STARTS Monday, Oct. 1 at 6:00 PM EDT

and

ENDS Tuesday, Oct. 2 at 6:00 PM EDT.

(If you’re not in the Eastern US, you can find out when the calls are in YOUR time zone using this time zone converter. If you are more visually oriented, here’s a map of the world’s time zones.)

You do need to register in order to get a call-in number and PIN. Find all the details and register here.

Secondly, the online chat is set up! It will go from noon – 2:00 PM US Eastern Daylight Time (9AM – 11AM PDT or 16:00-18:00 GMT). Click here to enter the chat room. Have questions about the chat? Contact me.

Thirdly, someone else has also now scheduled a face-to-face empathy by webcam for October 2, from 1:00 AM to 3:00 AM US Eastern Time (October 1 from 10 PM – 12 AM US PDT or 05:00-07:00 GMT). To register for empathy by webcam, enter your name and email address at http://www.PANinA.org/Empathy.

If you know someone who doesn’t have web access who would like to register for the calls, please contact me and I’ll get in touch with them by phone.

P.S. It just so happens that Marlena, my wonderful teacher, will be offering a new series of her classes in October. “Healing Listening, Healing Talk” is the name of her classes in Nonviolent Communication for people with disabilities and chronic illness. If you’d like info about the classes, contact me, and I’ll email it to you.

Hope to “see” you on a call or chat room!

– Sharon and Barnum, SD/SDiT who is sooo eager to work because we have not been doing enough training for his taste!

P.S. Yes, I will return to dog blogging again after this!

UPDATE: A Call Changed My Life: Global Empathy Call Oct 1 & 2

This has been a busy and rather extraordinary week for me, and one which I hope will lead to something enjoyable — maybe even wondrous? — for you.

The Story Begins One Year Ago

Last year at this time I was consumed by grief over Gadget’s and Norm’s deaths as well as by the multiple other losses I’d experienced in close proximity: the loss of feeling safe in my home after a natural disaster; new functional limitations in every aspect of my life caused by Lyme disease; and the loss of several very important friendships. I was in a constant state of pained numbness. I was angry a LOT. Underscoring everything was my unrelenting self-loathing and self-judgments, which I didn’t even realize were there.

When I found out, via a friend who was also studying Nonviolent Communication (NVC), that there was a marathon global empathy call in honor of Gandhi’s birthday (October 2) and the UN International Day of Nonviolence, I was a little dubious. I didn’t get it — what would people DO? Would I have to interact with a bunch of strangers who would not “get” my life, with all its disability-related weirdness, loss, isolation, and complexity?

But the call was free, and I heard from some friends that it was really great, so I figured I had nothing to lose. I could call in and just see what it was like, and if I didn’t enjoy it, I’d just hang up. At first, I just listened. I was amazed at the courageous vulnerability of those seeking empathy and in awe of the skill — combined with a depth of compassion and empathy I’d never witnessed before — of the facilitators and participants who were so interested in supporting other participants, regardless of the topic or the person.

A globe brightly covered with the colorful flags of all nations and people that look like paper dolls standing in a circle around the globe holding hands. The 12 people are each a different shade of the rainbow, from red to purple.

Global Connection

I started calling in as often as I could, and each time I felt a stronger and stronger desire to request empathy, even though I felt very scared and nervous. I felt comfortable with my little knot of NVC students and teacher who also had chronic illnesses and disabilities, but this number of unknown, mysterious strangers on the line, what would they think of me? Maybe they would be as disgusted with me as I was with myself. After all, hadn’t the friends who left my life told me I was a selfish, horrible person, not worthy of attention? (That was what I believed back then; now I know that that is probably not at all what they thought.)

I Finally Spoke Up

Eventually, standing in the stream of empathy flowing around me, I wanted to drink of that water, too. I really felt like I would implode if I didn’t get some empathy. I made a request for time on the call. Having held in my grief for so long — years! — as soon as I started talking, overcome by anxiety and sadness, I just sobbed, all my grief just pouring out of me. It was hard even to talk.

Honestly, I don’t remember a lot of what I or others said. I remember a few words and phrases here and there, and certain names and voices. But mostly, what I was completely astonished to learn — and what I didn’t believe the first times people said it — was how much they were moved by my call, how much it had given to them, that my sharing my pain was a gift. I actually stopped someone to ask her “Why?” Because I couldn’t believe it. It happened to be Mair Alight (one of the organizers of last year’s call and now one of my NVC teachers) who answered me. I don’t remember what she said, but she was clearly speaking the truth. She was not being “nice” and lying or being pitying or patronizing. She was genuinely connecting with me, and that connection was nourishing to her. That shifted something large inside me. I always remembered her name and voice after that.

When I first started speaking (and crying), I was cringing, waiting for the silence of repulsion or the polite words of distance, letting me know that really, it was not appropriate to just sob on the phone to a bunch of people who don’t know you. But I got the opposite. I got love and tenderness. From strangers.

That was also the first time I had a chance for a communal grieving process for Gadget and Norm. I felt held and cared for like I never had been before. To experience such deep compassion from strangers around the world was transformative. I left the call raw and open and exhausted, but also with a sense of a heavy weight on my heart having been lifted just a bit. The wound of unattended grief that had been festering for two years was finally able to begin healing.

Hope

I don’t usually use language like this, but that call for me was a rebirth. It gave me all sorts of hope. Hope that I could have friendships and close connections with other people again. Hope that maybe there was good in me, that I had something to contribute to the world. Hope for things I can’t even define or name.

Several people expressed concern about my needing much more empathy than I was getting in daily life and suggested other free NVC phone classes and practice groups, which I scribbled down on bits of paper. With these leads, I threw myself into every NVC endeavor I was able to. For a while I had several embarrassing interactions where, when I met a new NVC person in a phone practice group, they would tell me they recognized me from the call. But they all seemed to view that as a positive thing, and more than one person told me that my call had been the one that had moved them the most or been one of the most meaningful.

The long-term effects of that call have been amazing — not just that one catharsis, but the connections to other people and groups have made me much more attuned to my and others’ feelings and much more aware of what my underlying needs are and how to fill them. One unexpected result is that I am a much happier person now, more compassionate toward myself and others, and much, much less angry. (Funny side note: I said to Betsy a couple of weeks ago that I realized I very rarely got angry anymore, and that now I was aware that I used to be angry constantly. I said, “Do I seem less angry to you?” And she widened her eyes and said, “Yes!” Nodding her head so emphatically that it was comical.)

I Have Come Full Circle

Ever since the call ended last year, I have been looking forward to this year’s. Last week I emailed Mair to ask her for details on this year’s event. She said it had not been planned; nobody had had the time and energy to take it on. However, she said, if I could help organize it, we could do it together.

I thought about it and decided I couldn’t NOT volunteer because otherwise the call wouldn’t happen, and I wanted it to happen so badly. I thought there would be a few of us organizing it, but nope! It’s just me and Mair, and people were referring to me as the “lead organizer”! How did that happen? I never dreamed I could or would be doing this, but the call is scheduled, facilitators are volunteering, and I very much hope you will join me!

You don’t have to know any NVC to attend and enjoy this event; all human beings are very welcome! (Of course, dogs are welcome to listen in, too.)

And because of my own disabilities and that of many of my friends, I have also added an online, all-text chat to the schedule, which I will be co-hosting. All are welcome to the online chat, just like the calls. You can do both!

Here are the details of the event: This is a free global empathy call that will span 24 hours, facilitated by teachers, practitioners, and enthusiasts of NVC. The intention of this call is to experience community through empathy. You can ask to receive empathy or offer to give empathy or just listen and witness the flow of empathy.

Every two hours a different facilitator, or team of facilitators, will be hosting — bringing their own perspectives and experiences to the call. Note: For technical reasons the 24-hour period has been broken up into six (6) four-hour “sessions,” but you can call in (or leave) any time during any “session.”

The call will START Monday, Oct. 1 at 6:00 PM EDT

and

END Tuesday, Oct. 2 at 6:00 PM EDT.

The timeline chosen means that in every part of the world, some of the call will occur on October 2, the United Nations International Day of Nonviolence and Gandhi’s birthday.

(If you’re not in the Eastern US, you can find out when the calls are in YOUR time zone using this time zone converter. If you are more visually oriented, here’s a map of the world’s time zones.)

Click here to register for the call!

Plus the Online Chat!

Of course, given my own intermittent speech disability and the many Deaf and hard of hearing people I’ve had in my life, I am aware that conference calls are not always the most accessible forum for everyone (although I have used relay in NVC classes and practice groups). I know of people who prefer text to spoken communication due to seizure disorders and autism, as well. So, I really wanted to have one “call” be online. I’m excited and nervous because I will be co-hosting, and I don’t yet know who will be my co-host(s), but here is the info:

A two-hour live online empathy chat

on Oct. 2, from 12:00-2:00 PM EDT.

(Again you can find out when the chat is in YOUR time zone using this time zone converter.)

You do not have to have a communication disability to attend the chat! We welcome anyone who would enjoy giving, receiving, or witnessing empathy in an online environment or who is just curious what it’s about. To join the chat, click here or go to http://us7.chatzy.com/76139319355482

Please spread the word about the calls and the chat!

**NEW: Another online option has been added! There will be a face-to-face empathy by webcam on October 1 from 10:00 PM to midnight PDT. To register, enter your name and email address at http://www.PANinA.org/Empathy.

Will You Join Me?

You do need to register for these events — that is how you get the call in number and PIN code for the calls (or the URL for the online events) — but you can drop in whenever you want, or decide not to go at all!

Please note that this is a free call. When it asks you for the amount you’re paying, just put in “0.” If you would like to make a donation up to $24 in appreciation of our work organizing this event, we would certainly appreciate it, but our deepest wish is for the presence and participation of everyone who wants to come!

When I took this project on, it was only with a desire for the event to happen. I knew I’d be using a lot of “spoons” on this that would leave little or no time for other activities, including training Barnum and the bits and pieces of writing and editing I’m trying to do for pay again.

Click here to learn more or register!*

* 1. If using the computer is difficult for you or for a friend who is interested, please contact me, and I will be delighted to register you or them!

* 2. If, for some reason, you have trouble registering (if you don’t get your call-in number and PIN), please contact me.

Getting the Word Out

In all honesty, I am trying everything I can think of to get the word out, and I don’t know if it’s having any effect, so I would appreciate it very, very much if you would post the link to this event on Facebook, Twitter, Tumblr, Google+ and share with friends, etc.! Or reblog or retweet this blog post. Or tell someone in your life.

I very much hope this year’s Global Empathy Call will be as rewarding for all involved — hopefully including you — as last year’s was for me.

Love, Sharon (and Barnum, who does not understand the fascination of the black box on the overbed, the clicky thing in the lap, or the wire thing on the head that the sounds come from)

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)

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

Waspish Wednesday: New Wrinkle on Captcha Problem

Howdy.

I have posted before about how Captcha interferes with internet access. It seems like almost daily I hear from a friend that she can’t access a website, a forum, or other resource because of Captcha, also known as word verification or image verification. It is a scourge on the landscape! It is an access-blocking nightmare! And it seems to be spreading everywhere you turn.

An example of some Captchas -- making the internet inaccessible to many people! Grr.

It has come to my attention that Blogger has made it harder (but not impossible!) to disengage this “feature” in the comments section of blogs. I discovered this when I went around to the various blogs that participated in the huge and amazing PFAM blog carnival I just hosted at my other blog, Bed, Body & Beyond to thank the bloggers in their comments. Almost everyone who used Blogger had Captcha. I was feeling quite frustrated.

Then I found out from a couple of them that there is a new Blogger and that with new Blogger, you cannot disengage word verification! They had tried but didn’t know what to do next. Augh! In particular, Kelly at Fly with Hope, was gracious and tenacious at informing me of the situation and running down and fixing this problem. Thank you, Kelly!

I tweeted my friends for information on any workarounds, and L-Squared of Dog’s Eye View informed me that there is a way for bloggers to deal with this:

They can report it using the Send Feedback option in the Nav bar & for now they can switch back to “old Blogger” to disable it.

No, it is not an ideal solution, but for those who are willing and able to jump through these hoops, we salute you for helping to make the internet a slightly more accessible place!

Please, website designers and software developers, do not be seduced by the popularity of Captcha. It hurts people. It really does. There is a better way, I promise you.

I am completely exhausted. I’m going to tick check the dog and myself, eat, and go back to sleep.

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

P.S. Barnum is actually starting to be useful on random occasions. Today, one of my slippers was not nearby, and I asked him to retrieve it, and he did it perfectly! Woohoo!

Both Carnivals Accepting Late Submissions: ADBC & PFAM

Assistance Dog Carnival Deadline Pushed Back

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.  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

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.  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

Waspish Wednesday: Ask Alima to Ditch the Fragrance

A couple of months ago, I wrote a blog in which I wore makeup and enthused about the company, Alima Pure, that made the makeup. I bought this makeup many years ago, and it’s still in great shape. I even linked to them. The big deal was that they made the only makeup I’d been able to tolerate since I developed multiple chemical sensitivity (MCS) in 1995. I had tried other brands that were sold by MCS catalogs, even, and not been able to tolerate them.

All of this company’s products are basically loose mineral powder (blush, foundation, concealer, eyeliner, eyeshadow) that must be applied with a brush of the correct size. So, it’s a fair amount of work. However, since it’s just minerals, there’s no gunky stuff that makes me sick. And no smell.

The problem is that I’m not all that interested in most of those products. Back when I used makeup, I wore eyeliner, mascara, lipstick, and some powder to take the ever-present shine off my face. (Since I developed MCS and rosacea, I am even more naturally “rosy” — aka face-like-a-beet — than I was before.) Thus, I have never used blush in my life, and I doubt I ever will. I rarely bothered with eye shadow, either; it just wasn’t my “thing.”

What I really wanted was lipstick. Alima doesn’t sell lipstick, but they sold a wide variety of lip glosses that were tinted. I bought several samples of the darkest shades they had, and there were some I liked quite a bit. It was pretty miraculous that I was able to use the lip gloss, because I had not been able to use anything on my lips, even plain beeswax lip balm, since I got sick.

I decided that eventually I would buy a full-size tube of gloss, because the little pots that the samples came in had to be sort of scooped out with my finger, which was messy and wasteful. However, since I only use makeup about twice a year — and if I do, I have to make sure not to wear a mask, or it will smudge all over the place — this was not a huge priority.

Finally, a few weeks ago, I got a note that the company was having its seventh anniversary. I’m not sure how I got on their mailing list after having not been on it for many years. Anynoodle, they were giving away free eye shadow and offering a discount on any purchase. I thought, “What the heck?” And went to look at the lip gloss.

I was disappointed to see that only a few shades were offered now (used to be a couple dozen, currently there are nine), none with the same names as the ones I’d bought before. There was also very little information about what they looked like. I scoured the information on the pages for the glosses that looked promising, but the detailed descriptions of shades were not part of their new look, either. I took my best guess — buying the two darkest reds — and placed my order.

Normally I put a lot more care into buying things — reading all the details and double-checking everything. But I was sick and exhausted, and I found their website confusing and difficult to navigate. I thought about calling them before I placed my order, but it was the weekend, and if I waited for their customer service hours, I would miss the sale.

Some of my confusion was because there was one page that said, “Lips,” which was the introduction to the lip gloss, but which did not contain any detail on any of the glosses. You had to go to separate pages for that. Also, the writing was minuscule. I am used to enlarging the print on my screen, but I was tired, my eyes were tired, and I guess I didn’t enlarge it enough. I was assuming more detailed information about the lip glosses would be on the pages that included the actual information about each lip gloss.

I read the “description” of each gloss (which consisted, usually, of one or two words, such as “sheer red,” and that’s it) and the ingredients. The ingredients were another long list in tiny, tiny font. I skimmed them, and it seemed to be pretty much minerals, like what I’d bought before. I did not read every single of the couple dozen ingredients, as it was all sort of blurring together, and I had already purchased products from them, so what could have changed so much, right?

Obviously, from the title of this post, you know I was wrong.

A week later, my box of luxurious new products arrived. It was all very long and non-smelly and clean. There were the free eye shadows, a couple of free samples of eye shadows I hadn’t ordered, and the two tubes of lip gloss, each in their own long, thin cardboard box. I opened one, pulled on the wrong end for a while, then pulled on the right end to remove the cap, and prepared to . . . ack! What was that smell? Why did my lip gloss reek of mint? Was I imagining this? What was going on?

I hurriedly replaced the cap and looked at the ingredients list on the box. Buried in the middle of a an 88-word ingredients list was “Organic Mentha Piperita (Peppermint) Essential Oil.”

They had added a freaking fragrance essential oil to their lip gloss! AUGH! I checked the box on the other one, and it had the same mint oil as its last ingredient. AUGH!!

I had been looking forward to this for so long — my full-size tube of lip color! I’d been so excited, and now I had spent twenty bucks (including shipping) on worthless stinky crap!

I called them up and spoke to a customer service representative. She was not apologetic. She was defensive, and she did not listen to me. She kept saying things like, “All our other products are unscented. The lip gloss is the only thing that is!” And, “We made it gluten-free!” And, “We announced this in our newsletter!” She didn’t seem to get why none of this was relevant or helpful.

One of my main points was that they should have made it very clear on their website that there was added fragrance to the products. That it should say in big, bold letters, on all the lip gloss pages, “These lip glosses contain fragrance from essential oils.”

She kept telling me how they’d sent out announcements to their email list that this change was coming. I told her repeatedly that didn’t do me any good because I had not been on their email list, but either she didn’t believe me or she just wasn’t listening. I don’t know. She just kept repeating that.

Then we got into an argument over whether there was, in fact, any information on their site warning customers that the lip glosses were scented. It turned out that buried in a small paragraph, in tiny print, on the “lips” page — not the page that actually gives you any information about any of the individual lip glosses, mind you, but what seems to be an introductory page that just says, “Hey, we have stuff to smear on your lips!” In their minuscule, five-sentence blurb on the “lips” page — which was basically the only thing on the page — they included these two sentences: “Lightly scented with a touch of organic peppermint oil. Yes, you deserve it.”

Oh, I deserve to have my face burn and turn red? I deserve to be gifted with a headache and a sore throat and brain fog? Swell.

Obviously if I had seen that, I would not have bought anything! But I didn’t see it, because it appeared to be a page that was basically devoid of information or actual products!

She also kept repeating that if I had read the ingredients lists, I would have seen the mint oil. Oh, well, obviously I deserve what I get because the fact that there was fragrance didn’t LEAP out at me from the ingredients list, which looks like this (except much, much tinier):

Organic Prunus Amygdalus Dulcis (Sweet Almond) Oil, Organic Ricinus Communis (Castor) Seed Oil, Organic Butyrospermum Parkii (Shea Butter) Fruit, Organic Beeswax, Organic Carthamus Tinctorius (Safflower) Seed Oil, Organic Cocos Nucifera (Coconut) Oil, Organic Camellia Sinensis (White Tea) Extract, Organic Theobroma Cacao (Cocoa Seed) Butter, Organic Punica Granatum Linn (Pomegranate) Seed Oil, Organic Simmondsia Chinensis (Jojoba) Seed Oil, Organic Mentha Piperita (Peppermint) Essential Oil, Organic Punica Granatum Linn (Pomegranate Extract, Tocopherol. May Contain [+/-]: Mica (CI 77019), Titanium Dioxide (CI 77891), Iron Oxides (CI 77491, CI 77492, CI 77499).

That fragrance mention — the single word, “essential” — really arrests the eye, doesn’t it?

Of course, they don’t allow returns because these are personal care items. The service person offered me store credit to buy any of their other items, but since it will take me the rest of my life to use them, that’s not very helpful.

Pretty much, I kept trying to get my points across, and she kept arguing with me, not apologizing, not agreeing that I had anything to be upset about, and not offering me any compensation. My points were, in order of importance to me:

1. You should put in BIG BOLD LETTERS EVERYWHERE that the lip gloss that is sold on your site is FRAGRANCED.

2. I want my money back on these lip glosses, since I will never be able to use them.

3. Why the fuck did you add fragrance to something that was perfectly good beforehand? Every other makeup company in the world puts fragrances and toxic crap into their products. Why on earth would you screw up the thing that made you a viable alternative?

I was much more polite than this in person, which got me nowhere. Finally, I was so upset, I started crying and said that I lived on a fixed income, that this was a really big deal for me, that I had been looking forward to it, and that I did not feel I was being heard.

That seemed to make a dent. She stopped defending and parrying and listened to what I was actually saying. That turned things around.

She said she would tell the owner — who made these decisions, not her — my very strong request to have very blatant warnings about fragrances in their products, and my plea to get rid of the fragrances as soon as possible. She also said she would refund the cost of the lip balms.

She did tell me again, however, that they had made the lip balms gluten-free for some of their customers, and then someone else had complained that they have soy in them! (As if, you know, I should join in on her righteous indignation that someone dared indicate to them that they have a soy allergy.) She sort of insinuated that removing the gluten had been a reason for adding the fragrance, which makes no sense, since so many of us who are allergic to gluten are also sensitive to fragrance! And also, I’ve never heard that gluten or essential oils are required for making lip gloss; clearly they aren’t, because they used to make unscented lip gloss, and now they make gluten-free lip gloss.

She also said that I was just one person, and that therefore my complaining about the fragrance wouldn’t make any difference. They would have to hear from a lot of people that they had an issue with the fragrance before they’d consider changing anything.

On one hand, her saying, “You’re just one person,” didn’t feel so good. It kind of underlined the sense I’d had throughout our encounter, which was, “Your needs aren’t important.” On the other hand, she was being honest with me, and I appreciated that. I know that usually a large number of people need to complain about a product before a company will change it. The logical course, it seemed to me, was to write a blog about it and ask YOU to contact this company and get them to switch back to fragrance-free products!

However, I did not write this blog soon after it happened. For the last six weeks, I’ve been too sick to deal with this. Now, I’m finally writing about it, and I just checked their website and — surprise! — they now have eliminated the useless, irritating introductory “Lips” page and combined it with the actual list of lip balm products. So now, at least, that one tiny sentence that indicates there’s fragrance is at least on the same page as the lip glosses themselves. However, it’s still just that one obnoxious little sentence in tiny font at the end of their twee little paragraph about the lusciousness of their products. They have NOT indicated on the pages for the individual glosses, “NOTE: This product contains fragrance.” It is not in large or bold font. It’s still very easy to miss.

So, my friends, I would greatly appreciate it if you would contact Alima Pure, using whatever method works best for you:

Telephone: 503-786-8224 or 1-888-380-5420

Snail-mail:
Alima Cosmetics, Inc.
18342 SE River Rd.
Portland, OR 97267

E-mail: Use the form on this page, http://www.alimapure.com/alima-pure/contact-us. (I don’t think there is any word verification/CAPTCHA, thankfully.)

Here are some talking points for your phone call or email or letter:

1. Alima Pure should reformulate their lip gloss to make it fragrance-free. Fragrance is unnecessary and only makes the product unavailable to those with chemical sensitivity.

2. Until Alima Pure changes their lip gloss formula, all pages relating to lip gloss should contain a notice in highly visible — large, dark print — indicating that the lip glosses are scented.

3. One-third of the population has a sensitivity to chemicals, with fragrance being among the most common source of symptoms. They are losing customers by following the herd and making all their lip products unusable for people with fragrance sensitivity.

4. Creating a gluten-free product is not incompatible with going back to fragrance-free. It is possible to do both, and in fact, there is a large overlap between those with gluten intolerance and those with chemical sensitivity.

5. If they do remove the fragrance from all their products, you will be happy to tell your friends with fragrance and/or gluten sensitivity about them.

Thank them for their time.

Please spread the word on this! Share on Facebook, Twitter, Tumblr, etc. Please ask friends to send an email, etc.

If you have a blog and you’d like to cross-post this piece, I’d appreciate it very much! I only ask that you cite me as the author and include a link back to After Gadget with your post.

Thank you!

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

QuickPress: Funny Dog & Resources for Learning about MCS

A quick training anecdote from yesterday:

I was working on “plate zen” with Barnum, which means I’m trying to teach him that all plates, bowls, and mugs are out-of-bounds for dogs. I am trying to teach this as a default behavior, which means I don’t want to have to say, “Leave it,” 80 times per meal. I want him to just know to leave all plates alone.

I used different plates, sometimes with a piece of food on them, sometimes empty. Sometimes I’d put them up to his nose, and sometimes I’d hold them in my lap. Barnum needs to have all the fine points explained to him. He apparently realizes that he’s a dog, and that therefore he doesn’t generalize well. (Gadget hadn’t read the book on dogs not generalizing well, so I used to think it was a load of hooey.)

Anyway, I switched back from a blue plate (yes, it was the blue plate special — thanks for asking) and put a clear glass plate in my lap. I waited to see if Barnum would back up.

Barnum waited to see if I would give him some clue as to what to do. I didn’t, so Barnum offered, “Chin,” and rested his chin on the plate in my lap. Then, like the gifted and serious-minded dog trainer I am, I fell out laughing.

It was so adorable: “Here, would you like me to put my big slobbery beard on this plate? Look, I’m really resting my whole head on the plate. Will you click me now?”

Barnum backed up in confusion when I started to guffaw. Having learned my lesson, we tried again. Barnum rested his head on the plate again. I burst into laughter again. Poor dog. We did eventually actually get to some real training, and he earned some clicks and treats.

I am very behind on emails and comments. I’ve been super sick for the past two weeks. I sent out a mass email telling people to please be patient, but there is a problem with my email, and I’m not getting all of them! So, I know at least one person didn’t get that.

Anyway, I am not apologizing, but I am explaining.

Readers have requested I write on certain topics. In many cases, I have written partial blogs in reply, but I haven’t finished them. In other cases, I feel so overwhelmed, I don’t know how to begin.

For instance, many of you have asked what you would need to be able to do to visit me. I am deeply appreciative of the interest you’ve shown in learning about MCS and less-toxic products! I wish I were more able to answer your questions in a timely manner.

Until I can write more, here are some links of resources put together by friends of mine:

  • Another great resource is the video/DVD, Secondhand Scent: Accommodating People with MCS. I’m biased because I participated in the making of this video, but I honestly think it is one of the best tools available to explain to people how and why to become more MCS-accessible. To order the video, please call the Boston Self-Help Center’s message line, 617-277-0080 (voice/TTY), and someone will call you back with details and arrangements.
  • Finally, another video/DVD about living with CFIDS and MCS is Funny, You Don’t Look Sick. This doesn’t provide information about how to become MCS-safer, per se, but before I got Lyme disease and got sicker, it was a pretty good description of my life (except in terms of severity). Co-produced by singer/songwriter Susan Abod, the movie is “an autobiography of an illness.” It gives you an eloquent glimpse into the life of someone with MCS and CFIDS. If you scroll down, you can watch a trailer for the movie on this page.

Indeed, Susan is finishing a very important second documentary, which she has been working on for over ten years, right now! (The trailer for this movie, Homesick, is below the one for Funny.) I’m very excited about this. I hope to interview her about that project soon.

Enjoy! I am very grateful for the requests for information, even if I’m not always able to keep up with them. Keep it coming!

– Sharon, the muse of Gadget, and Barnum, head-on-a-platter SDiT


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