Archive for the 'Waspish Wednesday' 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.

Two Things Service Dogs Can Do that Assistive Technology Cannot (with a side note on brain injury)

I’m having that feeling again. That feeling of being in a partnership. Of having a service dog I can rely on. It’s been three years since I last had that feeling, and boy, am I happy it’s back.

Not that Barnum and I don’t still have plenty to work on. We do. But here’s some of what he’s done today, and I’ve only been up five hours (and he was out on a walk for one of those hours):

  • Helped me undress for my bath by removing two socks, two long-sleeved shirts, and — with coaching — a pair of sweatpants
  • Shut my bedroom and bathroom doors to keep the heat in (repeatedly because I and other people sometimes forget to shut them, see below for memory issues in humans)
  • Shut and opened both doors when I needed them opened
  • Went to get my PCA while I was in the bathroom (opening two doors to get to her)
  • Retrieved my walkie-talkie, a plastic lid, and a pen when I dropped them
  • Retrieved my slippers for me (a few times)

And other stuff which I’ll describe below.

The reason I’m writing this post is that several times today I was able to rely on him for things that I hadn’t planned on needing him for, and it reminded me of all the times people have suggested I use this or that piece of equipment — instead of a service dog (SD) — for a particular problem. And why those solutions sometimes fail me. That’s why I’ve categorized this post under “Waspish Wednesday,” even though it’s not Wednesday, and it’s mostly a celebratory post. It’s also because now that I am enjoying the partnership I have waited (and worked) so long for, I am remembering (with some bitterness) all the unhelpful suggestions of people who have told me that I didn’t need a SD for what I need a SD for.

Not that I don’t use or believe in assistive tech (AT). I do. I use a lot of AT, and I am a big believer in people having access to as much AT as they want to improve their quality of life. And I also believe that there are some situations for which AT is much better than a service dog.* And, they are not mutually exclusive. They are complementary — in my case.**

So, here are two things that service dogs can do that assistive technology (with very few exceptions) cannot:

  1. Think
  2. Move on their own

For example, one of the main things I use Barnum for is communication. I have written about this quite a bit, especially in recent posts. When Gadget died, I got a “doorbell” that became my main way of getting my PCAs, but it had a lot of drawbacks that made me miss Gadget all the more. A lot of people over the last three years have suggested a lot of equipment ideas to rely on instead of Barnum. They are a bell (already have it), walkie-talkies (already have them), and an intercom (have it but can’t use it). Even though I use the doorbell and walkie-talkies every day, I still need Barnum. Here’s why:

  1. My assistants and I are human.
  2. I have neurological damage that impairs my memory.
  3. I have MCS (multiple chemical sensitivity).

Let’s start with #3. The reason I can’t use the intercom is the same reason that for quite a while I couldn’t use the walkie-talkies or the doorbell — they are plastic, and they offgas plastic fumes when they are new. The doorbell took the least amount of time to offgas. I don’t remember now — I think it was just a few weeks, primarily because the only part I have to be near is tiny and the bigger, smellier part is away from me, in the kitchen. The walkie-talkies took a year to offgas. The intercom we have had for over two years and it still reeks to high heaven. I doubt I will ever be able to use it.

Problems #2 and #3 are just variations on a theme. I’m human and my assistants are humans, therefore we sometimes forget things. They have sometimes gone home with the walkie-talkie. They sometimes forget to bring it with them outside. They sometimes go to the bathroom or to get the mail and don’t take them with them. One of my assistants refuses to carry it because of the electromagnetic radiation it emits.

Plus (#3) I have a disability which specifically fucks up my memory, therefore I forget a crapload of things all the time. Every day, many times a day, I forget things, often the same things, repeatedly. All these ideas you might have for dealing with this? Writing things down? Carrying things with me? Velcroing them to me? Timers? Alarms? I’ve tried them all. I already use them all. And it’s still not enough. So don’t fucking suggest them. Please. (That was the waspish part. Could you tell?)

Anynoodle, what I have done in the years since Gadget’s death and Barnum becoming a reliable SD is use the doorbell, and more recently, the walkie-talkies. They certainly are much better than not having them, but there are issues. One is that sometimes I can’t speak, so when that happens, the walkie talkies are about as useful as the doorbell in that they can convey only one piece of information: “I am trying to get your attention.” This can be very limiting, whereas having Barnum bring a note is much better, as I explained in this post.

Another issue is the brain damage/memory thing. I lose these pieces of equipment. A lot. I used to lose the doorbell and the walkie talkies constantly. Frustratingly constantly. Because the problem was that when I taped the doorbell to my overbed table, I didn’t lose it, but I could only use it when I was in bed and not to call for help from the bathroom. Then I got the walkie-talkies, mostly for their portability, and I’d forget to take them with me to the bathroom. (Oh, and someone suggested — after I explained about my memory — that I keep another set of walkie talkies in the bathroom at all times, which tells me that this person doesn’t use walkie talkies because they have batteries that must be charged every night, like a powerchair. If I left them in there all the time, the batteries would be dead when I need them. It also assumes I’d be able to find and reach them in the bathroom which is used by other people. Or perhaps she thinks I should buy three or four sets of walkie talkies?)

Then, I got the brilliant idea of Velcro! I velcroed the doorbell and walkie-talkie to my overbed table where they are within reach and cannot escape. I also put Velcro on my powerchair so I could bring them with me. This has worked very well for the doorbell in that I just leave it velcroed to my overbed table all the time, so I never lose it. But for the walkie-talkie, sometimes I leave it stuck to my overbed table, and I can find it. Sometimes I lose it in my bed. Sometimes I attach it to my chair and then use it when I need it, but more often, I attach it to my chair and then can’t get to it because I’m in the tub or on the toilet and my chair is out of reach, or I have gotten back in bed and left the walkie-talkie attached to my chair, and I can’t reach it, etc. (The bathroom that has the tub is not wheelchair accessible.) Or I bring it to the bathroom with me and put it next to the tub/toilet and then forget to take it with me when I leave and then it’s in the bathroom and I’m not, and I can’t get to it. See how helpful that piece of AT is?

Ahem.

But NOW, I have a working SD. So, today when I wasn’t sure if I needed help getting dressed or not after my bath, but I really wanted my PCA to go make me lunch because our time is limited, I could send her off to the kitchen with the agreement that if I needed her, Barnum would come get her (because I had left the walkie-talkie on my powerchair and also forgotten I had it with me, whereas Barnum’s a lot harder to miss!). And when I stood up and realized yes I had used too many spoons and I needed to get to my chair FAST before I fell over, I could have Barnum open the door ahead of me and skeedaddle out of the bathroom so I could make it to my chair, as opposed to having to sit back down on the toilet, wait for my PCA to come back, help me up, and get to my chair, which would used more PCA time and even more of my spoons. And when I dropped the walkie-talkie (that I’d forgotten I’d brought and therefore didn’t think to use and therefore left it behind), Barnum picked it up and brought it to me. And when I forgot to put on my slippers and they were in the bathroom and I was already in my chair, I could send Barnum back into the bathroom to get them.

You cannot call your bell or walkie-talkie or slippers when you leave them somewhere. Well, you can, but they won’t come. They also won’t retrieve things. They also won’t open doors to get to the thing or person you want.

I love my powerchair. I would be in trouble without it. But sometimes if I am feeling well enough, I prefer to walk to the bathroom, for example. (I try to always use as much energy as I can without overdoing; it’s a very difficult balance.) Sometimes it is fine and good to walk to the bathroom. Sometimes it’s impossible and I don’t try. And sometimes my powerchair is charging or I think I’m doing better than I am, and I discover that I have used too many spoons (especially now that I’m on Clindamycin which means I’m spending a lot longer on the toilet than I’m used to!) to get back to my powerchair, my doorbell, my walkie-talkie, my bed, and I might need my service dog to help me get up and walk back, or to open the door, or to get a human assistant to bring me my chair.

Choices. Having a service dog offers me choices. Because I can choose what needs doing in the moment based on what and how I’m doing and what I need, and I can ask him to do that particular thing, and he can do it nearby or at a distance. He can get and bring the thing or person I need. Because he can think, and he can move all on his own, without a joystick. Though he does bring me a lot of joy.

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

*I believe that wheelchairs and other mobility aids are generally preferable to service dogs for ongoing mobility needs such as balance, walking, etc., because frequent use of dogs as mobility aids can be physical damaging and dangerous to the dog. If you are a full-time wheelchair user, I think it is better to use a powerchair than to have a SD pull a manual chair. If you need walking assistance frequently, a cane, walker, or chair is probably a better bet. However, sometimes you need both. For example, when I have had my powerchair break down, I have used a manual chair with a SD helping to pull it as an emergency backup measure.

**I realize that some people use human assistants or canine assistants or AT instead of one or the other or both of these, and I fully support everyone having the options to make these decisions because no two situations are the same. Everybody’s situation is unique. For example, I know a lot of guide dog partners who do not use a cane because their guide dog is a far superior navigational aid, and I also know people who use both when training a dog or when an issue arises and people who prefer a sighted aid (person) or a cane. And all of us who partner with assistance dogs have times when we cannot use our dogs — when they are sick or have died or have retired — and we have to make do with AT or people in the meantime. I know people with physical disabilities who use SDs so they don’t have to rely on PCAs or certain types of AT, and I support that, too. In my case, I rely on all three, and I am fine with that, too.

Waspish Wednesday: The Obstacle to Training My Service Dog

A poster showing a paved road with a huge, long boiling mass of molten lava pouring out across the road, black smoke billowing up from it. Under the picture in large orange letters, it says, "Obstacles." Beneath that in smaller type, it says, "Some things cannot be overcome with determination and a positive attitude."

A Despair, Inc., Demotivator

[To enlarge image, click here.]

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

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

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

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

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

Uplifting, no?

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

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

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

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

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

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

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

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

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

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

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

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

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

But. . . .

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

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

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

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!

Waspish Wednesday: Komen Foundation Pinkwashing Us with Perfume (with a side note on #Occupy)

Alright, so technically it’s Thursday, but I’ve had so much going on, this is the first chance I’ve had to write this post. To whit, the Susan G. Komen Foundation is still pinkwashing consumers. Some of you might have seen my tweets and Facebook links about this, or read my DTOX Radio blog post. I’m taking it to you, my blog readers, now before October, “Breast Cancer Awareness Month,” is over, because there is more to be done, and it’s really very easy to do. It also might teach you a lot you didn’t know.

Let’s start with one of the most disturbing facts about the pinkification of breast cancer: It is actually preventing breast cancer awareness. The very thing all this pink ribbon shit is supposed to do — raise awareness about breast cancer and get women to take preventive measures? — has the opposite effect.

But, it’s not just that. It’s worse. Taking the offensive, ridiculous corporatization of “girly cancer” to the next level, the Komen Foundation is selling a perfume to raise money for breast cancer prevention!

The perfume is called “Promise Me.” As in what?

  • “Promise me that you will never buy or wear this perfume because it will make anyone with fragrance sensitivity sick?”
  • “Promise me that you will make the connection between people with breast cancer and people with MCS, because both have their disease as a result of chemical injury (poisoning) by things such as the petrochemicals in perfume?”
  • “Promise me you won’t wear this perfume around anyone getting chemotherapy, because it will make them sick?”
  • “Promise me you won’t buy into a corporation pretending to be a grassroots organization putting fundraising ahead of health?”
  • “Promise me you won’t buy into the pinkwashing the Komen Foundation is engaging in as it tries to backpeddle from their deceptive practices in the name of fundraising?”

Breast Cancer Action (@BCAction on twitter) has been calling Komen to task for their pinkwashing of breast cancer and irresponsible use of carcinogenic agents to raise money.

If you missed it, BCA’s press release to RAISE A STINK on this subject can be found here.

I signed on to the petition and email the Komen foundation. I got this form letter back from them. I felt very angry about it:

Thank you for your email to Susan G. Komen for the Cure® about the Promise Me fragrance. The fragrance was designed especially for Susan G. Komen for the Cure by TPR Holdings, which is donating $1 million to Komen annually for breast cancer research, education, screening, and treatment programs. The funds raised through the sale of the perfume will be put to good use in the pursuit of that goal.

Our first concern is always the safety and well-being of women and men facing this disease. To that end, our partners’ products are subject to review by our Medical and Scientific Affairs team, which evaluated the perfume’s ingredients, the latest research, and guidelines from the U.S. Food and Drug Administration.

According to our research, the ingredients found in Promise Me are within fragrance and cosmetic industry standards, and at these levels have not been shown to elevate breast cancer risk in people. At Susan G. Komen for the Cure, we support evidence-based medicine, that is, decisions based on current facts and knowledge.  In addition, we make this information available to our constituents, respecting that they are intelligent consumers who make informed decisions about the use of products based on evidence. As new research and new findings are published, we will certainly take them into account.

Nevertheless, at Komen’s request and to be sensitive to these concerns, the manufacturer agreed to reformulate the perfume. The last batch of the perfume was manufactured in May of this year; we expect manufacturing and sale of the reformulated product to begin in early 2012.  We do not intend to ask the manufacturer to recall or remove unsold products.

Komen has always believed that ending cancer requires research about how it begins and how it might be prevented, which is why Komen  has invested more than $65 million to prevention research and an additional $7 million supporting 18 projects investigating environmental estrogens, pesticides, steroid hormones, and nitrites/nitrates and their relation to breast cancer.

We’re also taking action for clarity and consensus around the direction that environmental research should take in the future, which is why we requested – and are funding – a $1 million study by the Institute of Medicine to answer that question. We expect IOM’s recommendations in December, along with IOM’s assessment of evidence-based strategies for individuals to reduce their risk of breast cancer.

Komen is strongly committed to addressing breast cancer through science, advocacy and community and global outreach to achieve our mission to end breast cancer, forever.

I’m going to deconstruct this reply based on my 16 years of experience as an environmental health activist. Then, I’ll give you the info on how Breast Cancer Action views this response.

First paragraph: This corporate buddy program is going to bring in a lot of money. That’s our first priority.

Second paragraph: We used FDA guidelines. Of course, since the FDA doesn’t follow its own guidelines for testing or labeling cosmetics, and in fact lets perfume manufacturers hide behind “trade secret laws” that keep those untested or known toxic ingredients secret, FDA guidelines really amounts to a free-for-all, with no regulation.

The third paragraph is so dense with misleading language that it requires several bullet points:

1. “The ingredients found in Promise Me are within fragrance and cosmetic industry standards” = see links above, that fragrance and cosmetic industry standards are set by the industry, itself, to avoid regulation.

2. “These levels have not been shown to elevate breast cancer risk in people” = “We don’t actually know if these chemicals elevate breast cancer risk in people, there’s just not enough proof yet to say we know. We also are not mentioning other types of chemical injury/health damage known to be caused by perfume chemicals, nor studies of fragrance chemicals’ effects on laboratory animals or the environment.”

3. “At Susan G. Komen for the Cure, we support evidence-based medicine, that is, decisions based on current facts and knowledge.” In other words, we only will believe that something is harmful once it has been on the market long enough, and enough people have gotten sick, died, and/or brought suit against us, and enough time has elapsed that the chemicals have been proven beyond a shadow of a doubt to cause illness, that it is in fact dangerous. We do not follow the Precautionary Principle, which takes the common sense approach that you first prove something is safe before introducing it into the environment and people’s lives and bodies. Instead, we believe in releasing products without sufficient testing, and only when they are known to be highly dangerous, are they removed from the market (when the damage is done). That is Science!”

4.  “We make this information available to our constituents, respecting that they are intelligent consumers who make informed decisions about the use of products based on evidence.” In other words, “People should just know, without being presented with all the facts, that the products we, a health advocacy organization, are promoting may be hazardous to their health, so if they get sick as a result, it’s their own fault for not being informed consumers.”

5. “As new research and new findings are published, we will certainly take them into account.” Again, “Once we have enough double-blind, placebo-controlled studies proving that these perfume chemicals are dangerous, we’ll switch to something else (which has not yet been tested, either).”

Phew!

Fourth paragraph: We’re still going to sell the stuff we know is hazardous that we’ve already made, but we’ll reformulate a new perfume that has slightly different ingredients, but will still, of course, because it is perfume made up of synthetic chemicals, be hazardous to health and the environment. But, once you know what’s in it, it’ll already be for sale, too.

Fifth paragraph: We’re spending a lot of money, folks! We are spending this million and that million, and we are even examining some environmental factors, just not the ones that affect our bottom line.

Sixth paragraph: We’re using a tiny percentage of our budget to discuss how we want to investigate “environmental research,” but we’ll only listen to “evidence-based” strategies, which is our way of saying that we can pick and choose which “facts” are most convenient for us.

So, that’s how I parse their response. Breast Cancer Action was equally unimpressed with the Komen Foundation’s response, which they say, Raises More Questions than It Answers.

If you would like to get involved in the effort to uncover the true nature of breast cancer research, funding, and other pertinent issues, BCA has a fantastic toolkit available (in PDF form):

With Breast Cancer Action’s Think Before You Pink Toolkit, you’ll get the resources, information, and tools you need to understand the truth behind pink ribbon marketing, the conflicts of interest in the cancer industry, and why so many women are still being diagnosed—and help others learn about it, too.

The toolkit gives the history and background of pinkification and how corporations have jumped on the pink bandwagon to cash in on concerns about breast cancer while selling products that promote breast cancer! THAT’s what pinkwashing is!

It’s easy enough to see the corporatization of breast cancer on your own, without any materials from an advocacy organization. Just put “Susan G. Komen” into your Twitter search box, and you’ll see hundreds of tweets about winning or buying cameras, clothes, purses, bras, and fashion magazines in the name of supporting the Komen Foundation. Forbes has even profiled the Komen CEO in this article, “Susan G. Komen CEO: Too Much Pink Is Never Enough.”

Meanwhile, here are some easy things to do to raise a stink:

You can use BCA’s handy-dandy form that just takes a moment to fill out and will then get sent to the CEO, chief marketing officer, and vice president of Komen for the Cure.

You can also contact Komen for the Cure and tell them in your own words, “Making and marketing a product to women that contains synthetic chemicals is NOT the way to fight breast cancer!”

You can tweet the Komen Foundation at @komenforthecure

Or use snail-mail: Komen for the Cure, 5005 LBJ Freeway, Suite 250, Dallas, TX 75244

Phone: 1-877 GO KOMEN (1-877-465-6636)

Email: http://ww5.komen.org/contact.aspx

Maybe it’s hard to think about this with all the global upheaval occurring. I plan to spend the next week’s blogs on #Occupy — specifically how people with chronic illness and disability can get involved in the efforts.

But I needed to do this first, because the #Occupy movement and the Think Before You Pink campaign are sisters:

Are you having trouble focusing on this or other “small matters” because you are wanting to work on the #Occupy movement? They are very much related. This excellent blog post, Telling the truth is a revolutionary act, by a staff member of Breast Cancer Action who was feeling this conflict and came to some profound realizations about the connections between the work she was doing, and the #Occupy movement.

Please click on this link to do your easy activism by sending a letter to the Komen Foundation. It will only take you a minute. And then, back to my regularly scheduled Barnum updates and lots — I hope — about #Occupy and how people with chronic illness and disability can get involved in the movement.

– Sharon, the muse of Gadget (who died of cancer despite getting lots of exercise and not smoking, drinking, or eating fatty foods), and Barnum, SDiT and budding RETRIEVER!

Waspish Wednesday: Please Don’t Comment on My Voice!

This post cross-posted at ChronicBabe.com.

Or, Behavior Modification (Training) Works on People, Too!

I’ve been disabled by chronic fatigue syndrome and multiple chemical sensitivity since 1995. However, when I became infected with Lyme disease and two other tick-borne diseases in 2007, I developed several new symptoms. One of the strangest and most difficult has been intermittent vocal cord apraxia, which means that sometimes I can’t make voluntary sounds, most notably speech.

The amount of voice I have occurs on a spectrum from total inability to speak, to severely affected (like a cerebral palsy accent), to scratchy and hoarse (like laryngitis), to completely normal. Most of the time, my voice slowly improves over the course of a day: upon waking, I can’t make a peep, but by nightfall, I can talk a blue streak. Other times, it’s very sudden: at noon I can’t say a word, but by 1:00, I speak fluently. Conversely, I may be talking fine until a chemical exposure or an exertion (e.g., taking a bath) steals my voice in a flash.

Frequently, when I can’t speak, it’s the sign of a “bad day,” when I’m also immobilized by severe pain and fatigue. However, there are times when I can’t voice, but I’m not feeling worse than normal — as well as days when I can speak, but I feel like hell.

Unfortunately, most use my voice as a barometer. Not only do they assume that if my voice sounds good, I must be feeling good, they also jump to the conclusion that I am recovering or have been cured! Virtually everyone* to whom I say, “Hello,” on the street or the phone, immediately responds with comments like these:

  • “Hey, you’re talking! You must be thrilled!”
  • “Your voice sounds so strong today! You sound really energetic!”
  • “Oh dear, I thought you were getting better. . . .” (This is said with deep disappointment, followed by an awkward pause, then a hurried escape.)

I usually just grit my teeth and change the subject as fast as I can. I understand the drastic changes in how I sound can be confusing, especially to new people in my life, but for people who have experienced the vagaries of my communication issues for years? In those cases, I want to scream, “Shut up about my voice! Just ignore it and treat me like a human, not a symptom! Stop guessing what it ‘means’!”

I don’t scream, especially because I know that these remarks — particularly the “your voice sounds terrific!” variety — are intended as compliments. Nonetheless, at a certain point, I decided to ask people not to start every conversation with a discussion of my voice. I usually say something like, “I know you’re trying to be supportive and encouraging, but I’d really prefer if you didn’t comment on my voice. You see, almost everyone does this, and it gets really tiresome.”

The response is usually a surprised and confused pause, followed by profuse apologies. I interrupt this, too, saying there’s no need to apologize, that they didn’t know, and that it’s just information I’d like them to have for the future. The best response is a “thank you for telling me.” This tells me they have not taken it personally. So far, this strategy is 100 percent effective; if I make this request, it is always honored.

Everyone has their own preferences about whether, how much, or with whom they wish to discuss their health or functioning. I personally restrict such discussions to family, and close friends who are also disabled. I know I’m not alone in my struggle. Like others with disabilities, I’ve had people comment on, and try to judge the state of my health based on, my use or non-use of various assistive devices (wheelchair, oxygen, filter mask, service dog) or my behavior (standing, sending an email, writing a post, leaving the house).

My advice to chronic babes who’d like others to ignore perceived clues to the vagaries of your condition? Tell them! My advice to those who I speak to on the phone or on the street? Ask about my dog training, writing, or opinion on the weather — just don’t mention my voice!

*The exception to this are those who see me, day in and out, with and without voice, and are used to its vagaries, such as my partner, my personal care assistants, and a small number of friends who are also disabled.

Waspish Wednesday: Receive Free Sn*ggle Sample (Then Vomit)

Wow! Sometimes I really have to wonder how I get on various mailing lists or get certain targeted ad campaigns. (Although, as we shall discover, I did eventually get a hint about this one.)

I mean, I understand why 80 percent of the FaceBook ads and AOL ads I see are for dog food or dog training or donating to the ASPCA. A little less clear is why I get ads for “Hunky Men!” or “Male Singles in Your Area Want to Meet You!” But, since I generally check “single,” in the categories asking me if I’m married, divorced, widowed, or single, I can sort of see that, too. (Most of those forms don’t follow that up with, “Oh, and by the way, are you a lesbian? Cuz we were just assuming you were heterosexual.”)

Be-that-as-it-shouldn’t-be, I was quite amazed at what slithered into my email inbox today. The subject line/headline is, “Receive a Free Sample of Snuggle(R) Fabric Softener!”

Yes, really.

Let’s start of with this question: Is there anyone on the planet who actually likes Sn*ggle? Even before I was chemically injured and developed multiple chemical sensitivity (MCS), I — and all my friends — loathed the Sn*ggle bear. Any time an ad came on with that noxious pipsqueak of a teddy, we wanted to throw something heavy at the TV. My favorite picture of the Sn*ggle bear was drawn by my friend Peggy Munson, for her page, Welcome to Camp NoStink. If you can view images, I definitely encourage you to check it out, because it’s hilarious.

If you can’t, here’s my best effort at doing the drawing justice. [Image description: A cartoon that looks as if it was drawn on a computer. An impressively realistic-looking brown grizzly bear snarls, with mouth open, holding the “Sn*ggle bear” by one ear. The Sn*ggle bear has the happy, vacant expression of a stuffed toy. It is holding a box that says, “Fabric Softener” under one arm. The other arm has been severed, with a bloody stump at the shoulder socket. The disembodied arm is flying through the air. Blood squirts out of the socket, the amputated appendage, and the Sn*ggle bear’s ear that is hooked on the grizzly’s teeth.]

Of course, this is nothing compared to the fact that Sn*ggle fabric softener is one of the worst toxic offenders and creators of misery for people with MCS. The problem with scented fabric softener is not only that it reeks of toxic chemicals that make me sick. It also, because of the adhesive properties created for these fragrance chemicals, adheres forever (really — you can never wash it out) to everything it touches or fumigates. Also, because it’s used in dryers, which are vented to the outside, it is forcibly blown at anyone who is nearby. Interestingly enough, some of the chemicals used in dryer sheets are dangerous when heated!

If you really want to hear a person with MCS rant about what makes our lives hell, mention fabric softener.

The email says, “Does your laundry need a little boost of freshness? Sn*ggle Fabric Softener comes in a variety of fragrances to put that extra ‘Ahhhhh’ in your clothes. . . . Just answer a few questions & we’ll send you a Free Sample!”

“Ahhhh” is right. But, I don’t think the tone comes across just so. It’s more like, “Aieeeee! Augh! Ack, ack, koff! Koff! Koff! [Vomiting sound].” And then a quiet moan of misery for the next day or several as the migraine settles in.

But for “Gift fulfillment” you must answer questions from Lifescript Advantage Women’s Health. This turns out to be your contact information, age, member registration, survey questions, and “completion of question asked in conjunction with this promotional offer.”

I googled Lifescript Advantage and found a page with a rotation of six advertisements articles on various topics. The first shows a picture of the same woman in two poses (and two outfits!). In the first pic, she is smiling happily (and wearing a yellow V-neck sweater). In the second, she is hanging her head with a big frowny face (and wearing a blue V-neck sweater). The caption is, “Up or Down? 10 Warning Signs of Bipolar Disorder.” I kid you not. We all know that if your mood changes (to match your sweaters), you must have a major mental illness, right?

The next one shows a headless guy in a snazzy suit holding a red rose out to you. (For me? Really? Aw, you shouldn’t have.) The caption is, “Is Mr. Right All Wrong? 7 Tips for Telling if He’s a Dream or a Dud.” And this relates to women’s health, how?

Then there’s the picture of a sausage held above a plate of bacon, which says, “Bacon vs. Sausage? Which is really healthier? Plus 8 other diet-friendly food swaps.” I’m going to guess, “Neither, but they’re both delicious!” (Now I’m hungry!)

There are two that actually seem to relate to women’s health, and they are, of course about (big hint: lots of PINK! BRIGHT PINK! REALLY REALLY PRETTY PINK BOWS!). Yes, breast cancer. Breast cancer, which is at epidemic proportions because of what? Carcinogens in our environment. Carcinogens such as benzyl acetate, chloroform, and limonene, among many other toxic chemicals found in fabric softener. (Yes, chloroform. You’ve heard of it? The stuff that’s used to knock people unconscious?)

However, the most disturbing, jarring, and all-out bizarre advert is the one of former President George W. Bush, wearing his little flag lapel pin, standing against a blue background, grinning as if he is still the President! Agh! Agh! Agh!!! No, no, no, noooooooo!!!!!

Okay. I’m alright now. Just needed to take a few deep breaths into a paper bag with my head between my knees. And check my calendar.

So, why am I being assaulted presented with a photo of the worst thing to happen to the planet since, well, I dunno, the discovery of pesticide? “Bush’s New Campaign,” it says. “Ex-President Launches Initiative to Improve Women’s Health.” Really.

Really? Really? Bush. Improve? Women’s? Health?!

In terms of his domestic policy, a Mother Jones article on Bush “waging war on women” reports:

Who has Bush placed in important posts involving women’s health, education, and employment? Well, darling, according to Bush appointees, when you get PMS, pray. If your husband beats the crap out of you, just agree that wives should be submissive to their husbands, and besides, as everybody in the Bush administration knows, women beat up men just as often as men beat up women. Oh, and if you get breast cancer, it’s your fault because you had an abortion—a conclusion that particularly startled people who study the disease.

Elsewhere, Bush imposed the “global gag rule,” which meant that any group receiving U.S. funding for family planning was banned from mentioning abortion, even when medically necessary. And how is women’s health in Afghanistan and Iraq, after Bush started the wars there? Not so good, I’d think, if any news was allowed to leak from the front lines. And all the environmental destruction he caused that is continuing to unfold? Good for women’s health, huh?

Well, there’s just too much to list, obviously. Right at the beginning of his presidency, NOW put out their “Bush Whacker” campaign round-up of W’s record on women’s rights. This is the harm he caused before he even became president.

So, yeah. This seems about right. When you know who the chemical corporations are snuggled up with, it makes sense that they run a “Women’s Health Issues” website with pictures of bacon, George W. Bush, and “9 Reasons Men Cheat.”

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

P.S. The weirdest thing of all was when I uncovered the address of who sent me this particularly nauseating slab of spam. It came from Free_SnuggleSample [at] homosexualse [dot] net. So, someone does realize I’m a lesbian. I’m not sure that’s a good thing.

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

Waspish Whatever-Day-This-Is: By “PTSD” I Mean “PTSD”

I hope this is coherent, because I’m having a lot of trouble focusing and thinking clearly. In the past twenty-four hours I’ve periodically been so dissociated I’ve had trouble keeping track of the day and trouble speaking. However, at the moment I’m calmer than I’ve been. Perhaps this is the eye of my emotional storm of anxiety.

As you may be aware, the East Coast of the US is facing a storm called Hurricane Irene. My sister-in-law is named Irene, but I bear her no ill-will. I just want to state that for the record.

I’ve written before about the ice storm two years ago that knocked out power — water, electricity, heat, phone — for a week during the winter, and how I couldn’t be evacuated due to my disabilities. And how I feared I would die. And how, in the aftermath, I suffered terrible losses, while in acute PTSD.

I did not have post-traumatic stress disorder (PTSD) before that experience. Now I do. This seems a hard concept for people to grasp. I’m not sure if it’s because people in general don’t want to hear about my anxiety, because it feels uncomfortable for them (perhaps a sense of helplessness that they can’t “make me feel better”?), or if it’s because it’s hard to grok that someone could have PTSD from “a simple power outage” — as opposed to more well-known causes such as military combat or sexual or physical assault or abuse.

For two reasons, I get upset when I don’t think people believe me or understand how freaked out I get at the mere thought of a power outage, let alone an extended one. The first reason is that I generally like to feel known and understood and believed. In this instance, I worry that people don’t believe me and instead think I’m exaggerating or hopping on some “disorder-of-the-month club” bandwagon or something. The second reason is that I think that if people knew that by “PTSD” I truly mean PTSD, they might be better able to respond to my distress in ways I find helpful, whereas there are very few people in my life who know how to do that now.

So, let me explain a bit about PTSD and why my situation is, in fact, actual PTSD, and why I think PTSD is especially rampant in the disability community. Then, I will offer some suggestions of things to say or do that I find comforting or supportive. If you’d like more information on PTSD, in general, this is a pretty comprehensive PTSD website, which provides this definition of PTSD:

Post-traumatic stress disorder (PTSD) is . . . an anxiety disorder and usually develops as a result of a terribly frightening, life-threatening, or otherwise highly unsafe experience. PTSD sufferers re-experience the traumatic event or events in some way, tend to avoid places, people, or other things that remind them of the event (avoidance), and are exquisitely sensitive to normal life experiences (hyperarousal).

Here is the difference between surviving an extended outage for someone like me, versus for most of the people in my town (who were not traumatized by the ice storm — many people actually said it was fun for them). This is a major difference, in general, between people with disabilities and people who are nondisabled, healthy, and mobile: I cannot escape. I cannot evacuate.

For one thing, aside from wheelchair access, due to my CFIDS/ME and Lyme disease, I need to spend most of my time in a quiet, restful surrounding, lying down in bed. For another, I have multiple chemical sensitivity (MCS), and the only other places that are MCS-accessible are the homes of other people with MCS, and they are as stuck as I am (especially if the also are mobility impaired and otherwise ill).

So, when “Rita,” the computer from my electric company calls to tell me that there might be “widespread power outages” and that “she” is calling me to take steps to get safe because I have medical needs reliant on electricity and should therefore prepare to evacuate, it is really not very fucking helpful. Thanks anyway, Rita.

The other issue is that I can’t do what most people do to weather a storm without power.

Let’s start with heat, shall we? I can’t tolerate wood smoke/wood stoves, gas, propane, or oil. The only heat source I can tolerate is electric. That is why being without power for a week in winter in New England was scary as hell.

Then there’s food. Lot’s of people during the ice storm cooked on wood or gas stoves. Obviously, I can’t do that for the same reasons I can’t use them as heat. Some went out to eat; obviously I can’t do that, either. So, you are probably thinking I should eat non-perishables. Well, that’s a problem because of my food allergies. I’m trying to think of which foods I can eat that don’t have to be refrigerated (until they’re opened). This is what I’ve come up with:

  • Rice milk
  • Hemp milk
  • Apples
  • Rice protein powder
  • Semi-perishables like brown rice bread, cucumbers, and lettuce
  • Organic plain cocoa powder
  • Olive oil

That’s pretty much all I can think of at the moment.

Then there’s water. Because when the electricity doesn’t work, neither does the water. This is not so terrific in general, as I know from living with non-flushing toilets for a week, but it’s also a problem not to be able to wash my hands when I need to infuse my medication (via my PICC line) or give myself shots, etc. Which reminds me: My intravenous and intramuscular medications need to be kept refrigerated.

Then there are all the things I rely on that use electricity, like air filters and powerchair chargers and book-on-tape machines, etc. I certainly can’t read by candlelight because 1) I can’t read print books, and 2) I can’t use candles.

Another problem is that often, when we lose electricity, we also lose the phone. This is particularly problematic because 1) if I need something — like help, or someone to talk to because I’M FREAKING THE FUCK OUT — I have no way to communicate with the outside world, because I can’t drive, and 2) we don’t have cell reception where I live. Let me repeat that because it seems very hard for urban and suburban people to grasp: No. Cell. Service. No, really. No iPhones or smart phones or texting or any of that shit. I don’t even know how to do any of that.

So, maybe you’re thinking, “But it’s summer, so you’re not in danger of the cold like you were during the ice storm, and Betsy is around, so you’re not by yourself, so why are you freaked out?” People tell me this. They are trying to be helpful. I know they are, but I feel terrible when I hear it because I am translating what they’re saying as, “Sharon, you are a crazy, irrational nut-job. It’s just an outage. It’s summer. Calm down, you drama-queen.”

The problem is that I have PTSD, and PTSD isn’t rational. Rationally, I am aware that it’s summer and that I’m not in danger of freezing to death this time. I’m also aware that, unlike last time, I am able to get out of the bed sometimes. I know these things, but I don’t believe them because there is a part of me that went “Zzzt! Pop!” and broke when I thought I was going to die alone and cold in the dark two years ago. That part views the world like this:

  1. I have electricity. Life is normal. I’m fine.
  2. I don’t have electricity. I’m going to die.

So, how do I know I have PTSD? Well, it started with the triggering event:

Virtually any trauma, defined as an event that is life-threatening or that severely compromises the emotional well-being of an individual or causes intense fear, may cause PTSD. Such events [may] include receiving a life-threatening medical diagnosis, . . exposure to a natural disaster. . . .

It was a natural disaster, and it felt life-threatening to me, but whether it was or not, it definitely caused intense fear and compromised my emotional well-being. And I was already living with life-threatening illness, which certainly didn’t help the situation any.

The following three groups of symptom criteria are required to assign the diagnosis of PTSD:

  • Recurrent re-experiencing of the trauma (for example, troublesome memories, flashbacks that are usually caused by reminders of the traumatic events, recurring nightmares about the trauma and/or dissociative reliving of the trauma)
  • Avoidance to the point of having a phobia of places, people, and experiences that remind the sufferer of the trauma or a general numbing of emotional responsiveness
  • Chronic physical signs of hyperarousal, including sleep problems, trouble concentrating, irritability, anger, poor concentration, blackouts or difficulty remembering things, increased tendency and reaction to being startled, and hypervigilance (excessive watchfulness) to threat

I have a lot more in the latter two categories than in the first one, although, when I’m triggered (if there is a blackout, for sure, or just if someone unexpectedly turns the lights off or if there is a possibility of an outage), I do have some of those symptoms. Mostly, though, I have the numbing, and then most of the things in the third category.

I think the reason this is a hidden issue is that most of the time, I’m not triggered, and even when I am, I’m usually pretty good at hiding it. Whenever there is going to be a weather “event,” I do my best to avoid hearing or reading about it. If people talk about the possibility of an outage, I get extremely anxious. I ask them not to talk about it around me if I can’t get away from them. But more often I play it off by making jokes and changing the subject.

If I absolutely can’t avoid hearing about it — as has been the case with this goddamn hurricane that everyone is tweeting about incessantly — I get flooded with anxiety, don’t sleep, can’t concentrate, lose sensation in my feet, have nightmares, and as a result of all this muscle tension and adrenaline, the next day I am having severe body pain, often immobility issues and migraines. My neurologically and immunologically impaired body does not take kindly to stress. It’s a hallmark of CFIDS/ME — emotional exertion kicks us in the teeth. Now that I have Lyme, any sort of muscle tension is repaid triple-fold.

Recently, we had a power outage that lasted under three hours, but it was at night. So, that meant suddenly it went from “normal” — with my fan blowing and my computer humming and all — to dark and silent. It was warm, there was no danger of my having hypothermia, and it was unlikely the outage would last for several days. Nonetheless, the second that the lights went out, my body was flooded with adrenaline. I couldn’t think. I didn’t know what to do. It took me about half an hour just to figure out how to call the electric company to report the outage. It wasn’t until I called the electric company and heard that my voice sounded weird and that I was having trouble catching my breath that I realized I was hyperventilating.

Barnum put his head on my lap, and I started to calm down, and that’s when I realized that my feet had gone numb and that my heart was pounding, etc. When the lights came back on, I was just flooded with relief — as if someone had poured a bucket of cool water inside me from the top of my head to the tips of my toes.

So, here are some factoids I found interesting from that site on PTSD: women are twice as likely as men to develop PTSD, and non-white people are also more likely to develop PTSD. Two theories as to why are

a tendency for individuals from minority ethnic groups to blame themselves [and to] have less social support.

This made me wonder about if similar issues might be involved for people with disabilities, since we also tend to be socially isolated and to internalize ableist beliefs that we are to blame for our struggles.

I also thought about how it applied to me since the immediate aftermath of the ice storm was that I lost almost all of my sources of emotional support. My best friend stopped speaking to me, one of my other best friends died, my therapist terminated with me, and my relationship with my other best friend — sister of the one who ditched me — became strained and distant. In fact, I had a lengthy nightmare this morning that was basically a replay of the ice storm, except that it was focused on my best friend who ditched me ditching me again. Then Gadget died. It was endless.

And I did blame myself. A lot. People in my life who ditched me made it very clear that the problem was me. They told me I was in crisis all the time, that I was emotionally difficult, etc. Well, yes, I was in crisis a lot because that was the nature of my life with multiple severe illnesses. And yes, some of the diseases that were untreated, or that became worse due to herxing, were making me crazy. I was not myself. So, yes, I was experiencing a lot of neurological damage that affected my moods and behavior, which was not only torturous for me but unpleasant for others.

So, all that is wrapped up in the pain and trauma of the ice storm. Along with guilt and shame that I’m still affected by it. This post is me trying not to judge myself for my suffering.

I said at the beginning that I’d mention some things that help when a weather event or outage is possible or is in progress. I know some of these are contradictory, and I’m not saying these are what would help everyone, but this is what does or doesn’t help me feel calmer, so maybe some of it will be relevant to others, too:

  • Talking about it — unless I bring it up — doesn’t help. It triggers my anxiety. I don’t want to hear that there may be outages or trees down or this or that worrisome thing. I get weather alerts automatically on my computer and from the electric company by phone. That’s plenty.
  • If I tell you I’m anxious, saying, “There’s nothing to be anxious about,” doesn’t diminish my anxiety. I just interpret that as you telling me to shut up, even though I know people say this in an attempt to be supportive. Saying something like, “I can understand how this could be very triggering for you. Is there anything I can do to help you feel less anxious?” would feel better.
  • If I say I’m anxious, even if I don’t “seem” anxious, believe me that I am totally freaked out. When I’m in a state of extreme anxiety, I tend to speak very slowly and quietly because I’m having so much trouble thinking that it’s an effort to string a thought together, let alone express it. However, I have discovered that most people interpret this as me being spaced out or mellow or something. Often, the more anxious I am, the quieter and more still I become. (A lesson from the animal world: It’s not just fight or flight, it’s fight, flight, or freeze; and many animals go with freeze.)
  • Likewise, reasoning with me would seem like it should help — pointing out that it’s not winter, that I’m not alone this time, etc., — but it doesn’t help. This comes back to the fact that there’s something in me that just connects being in the dark, without power, to potential death, and certainly terror and helplessness, regardless of how irrational that is. When I hear someone say, “But it’s not winter,” or “But it’s daytime,” I just feel ashamed that I’m having these irrational feelings. You could try saying, “Is there anything that feels safer now than before that you could focus on?” That might help. I’m not sure.
  • Part of the problem with reminding me what’s different is that I also don’t have a lot of what I had to survive the ice storm. I don’t have Gadget, and my grief feels overwhelming if those two losses/traumas combine. I don’t have my best friends I loved so much who tried to provide assistance from afar, etc. That’s why I think it’s good to focus on what I have now, like Barnum. Barnum helps a lot. For one thing, he’s entertaining. He helps me keep my focus out, which is important. He now has also gotten good at resting his head on my leg when I am anxious. He started doing it tonight, and I hadn’t even cued him. But then I started clicking and treating him for it so he would continue. Here are some adorable pictures of him resting his head on my legs while I wrote this blog:
In the foreground is a black cordless computer keyboard. Sharon's right leg from the knee down is visible, lying on a red comforter. Her left leg is hidden by Barnum with his big, hairy black head, eyes shut, resting on her left knee and thigh, his nose on the edge of the keyboard. His hind end is stretched out behind him on the rest of the bed.

Mm, comfy. (Can I have some cheese now?)

He tried out some different positions. This was the best one:

Similar to the previous picture, except Barnum has stretched his head out so his neck is on Sharon's left knee and his chin is on her right thigh. The only part of Sharon visible is her right knee.

This MUST be cheese-worthy. (No, I'm not eating the keyboard. I gave that up in puppyhood.)

  • If I am able to do training with him, that’s the most therapeutic thing there is, because it requires total mental, physical, and emotional focus and commitment. There is no room for me to obsess about my mortality. Thus, talking about Barnum is usually good. You can ask if I have any plans for things to do with him in the next couple of days (and not even mention the storm).
  • Ask me what is helpful! This is often very helpful. Ask me if I’d like you to distract me. Usually the best thing is for me to focus on other things, to just chat about stuff and keep my mind off The Scary Thing. When I was calmest today was when I was working on my other blog (I’m putting together pages with links to books I’m in) or doing stuff with Barnum or listening to Harry Potter. If you’re someone I talk on the phone with, call me and see if I’m in any shape to chat about something totally frivolous. If you’re a reader here or an email friend, do something similar. Please don’t be offended if I don’t respond. I am using a lot of energy dealing with being anxious, so I’m not responding to emails much right now. I might need to just listen to Harry Potter. The Harry Potter CDs are my wubbies. I know the books by heart. I literally can’t count how many times I’ve listened to them. When in doubt, listen to Harry Potter — that’s my motto. It’s so unrelated to anything in my world, it’s wonderful.
  • Because I tend to deal with my anxiety by trying to pretend that the weather event is not going to happen, I am often caught by surprise when it does, or when we do lose power. Then I freak out that I haven’t set aside water or moved the battery pack into my room or put the number for the electric company in any easy-to-find location. So, asking me, in a low-key way, if I have done these things can be useful. (We have.)
  • Let me know you care, ideally in a positive, low-key way. I got a voicemail today from a dear friend who is also homebound on the East Coast, letting me know she is thinking of me, and passing on a message from a West Coast friend to both of us of “a wish for calm, inside and out.” I thought that was lovely. It helped me focus on the idea of calm weather and a calm internal state, that both were possible.
  • I asked Betsy, if the power goes out, and I’m anxious, to remind me that I have a list of people I can call — with their phone numbers — and things I can do if I do lose power. My therapist helped me come up with it, along with a visualization. It helps me to know I have this list.

So, there it is. Writing this post gave me something to focus on, too.It too me about fifteen hours, on and off.

May you all have calm days and nights now and in the next few days, internally and externally.

– Sharon, the muse of Gadget (Mr. Cool), and Barnum (so calm that he’s asleep now)

Waspish Wednesday: Now, with Real Wasps!

Betsy got stung by a wasp today as she was dealing with one of our four composting nightmares. As she was sitting on the floor with a bag of frozen peas on her ankle, she said, “You should write a Waspish Wednesday about this!”

After I thought about it I realized she was right, it is Wednesday! I have other topics I’ve been wanting to write on, not least my post for the Assistance Dog Blog Carnival, if I can get it done in time. Meanwhile, though, what have I been up to?

Powerchair hell, as usual. A few weeks ago, I asked the people who built my big purple chair if I could please exchange it for a new chair or just return it for a refund, inasmuch as it is a lemon. They responded that they would completely change all the wiring and the wheel motors.

I thought about it. I knew I didn’t want that, because they’d already rewired it, and I’m convinced the wheel motors are not the issue. But I was trying to decide if I wanted to ask for a new chair or just a refund. I looked up the Massachusetts wheelchair lemon law and discovered that it is up to me, the consumer, as to whether I want an exchange or a refund.

I wrote them, referred them to the law (which is online; most states have wheelchair lemon laws), and told them I wanted a refund. They responded by yelling at me a few times. I basically said, “Can’t we please just settle this? I’m not asking for reimbursement for mileage for the many long trips. I just want a refund. I’ll return the chair.” But no, I kept getting emails saying it was my fault for using it in mud, snow, and rain, which is mostly not true, and also beside the point, as the advertisements for this chair and the conversations I had with them said it’s great to use it in snow, etc.

For the last few days I have been contacting the Better Business Bureau — who told me to file a complaint, but who have no teeth — and the Consumer Protection Office, who told me to file a complaint, and may or may not have teeth, and the Attorney General’s office, who told me to file a complaint, and who — I think — do have some sort of teeth. This is just exactly how I wanted to spend my summer. Sitting inside, reading websites, making phone calls, and doing paperwork for a chair that has caused me pretty much nonstop stress and trouble.

Right now I’m in the middle of writing a “Letter of Demand,” which the AG and the Consumer Protection office told me to write. I’ve got my calendar and all my old emails to refer to to help my sometimes rusty memory. In this letter, I demand he comply with the various applicable consumer protection laws, and then say that if he doesn’t, he could be facing big, nasty, mean court charges. It’s just a thrill, and I know he’ll be totally cooperative and reasonable once he gets it.

Meanwhile, I decided to see if I could resurrect my old pchair, my Jet 3 Ultra, which was a pretty decent machine in its prime. Betsy and I took it all apart, as this picture attests.

The seat of the powerchair sits sideways on the floor, disconnected from the base. Around it are tools, hardware, rags, cleaning solution, a flashlight, and other debris.

Actually, we'd already put the base back together when I thought to take pictures. We took it apart a lot more than this.

It turned out we didn’t need to take it apart as much as we did. We discovered this when Betsy suggested I find and read the manual and see if it tells us how to change the batteries, which it did. However, I’m not sorry we took it apart, because I learned about what’s inside and where and how to make all sorts of adjustments. It also gave us a chance to vacuum out a lot of debris and remove dust and dirt — which always harbors mold.

We adjusted the seating, which had always been too low for my long legs — raising the seat and then moving it back so my feet rested on the foot-plate like they were supposed to. (The original vendor should have done this, but he just dropped it off and left. That’s a story for another time.) Then, we had to move where the controller box (joystick) was sitting, so that would be in the right place, too. Betsy did a lot of heavy lifting; it was quite a job, but now I finally have two chairs with proper seating.

We tried taking out the almost entirely dead batteries and replacing them with some others I had lying around. Usually if you don’t charge batteries they die completely, but I thought that since the others were very-nearly dead, these others couldn’t be much worse. I was wrong. They are completely dead, and now the chair doesn’t go at all. It won’t even charge. However, it looks fabulous.

Powerchair reassembled. In the foreground, the chair, with a shiny gray captain's seat and red metal base with gray wheels. Behind and to the left, Barnum naps on his tan organic dog bed.

Voila!

I even figured out a problem that had stumped me for years, which was how to make my elevated leg rests from my new indoor chair fit with it. I figured out how to remove some thingies that had been blocking the  rails. I also took the seat belts off my useless purple chair and put them on this chair. (Which is where they were originally from.) With the addition of seat belts and extended leg rests, it will be safer, more stable, and less tiring for me to use for extended periods, such as for walking my dog! Behold! . . .

Side view of the powerchair with long, black, metal leg rests and a gray seatbelt with a red buckle.

Now I'm ready for action! (Sorta.)

I have been posting on a powerchair forum called Wheelchair Junkie, which is basically a bulletin board for power mobility gearheads. The folks there have given me a lot of helpful advice. I decided to get cheap replacement batteries for the Jet, just so I have a working backup chair and one that I can use with my existing van lift — so I can go to doctor’s appointments and take Barnum for working field trips to parking lots and stores and such. And, I will see how this chair does in the rough-and-tumble of my rural setting. Hopefully, it will be good enough until I get something with more power, clearance, stability, and speed. (I’ll talk more about ideas for that another time.)

I ordered my batteries from Amazon, the same brand and type that had been in there before. They arrived within three days, and I couldn’t wait to install them and see if the chair was viable! After all Betsy’s and my hard work, I was very excited.

I took out the old batteries, put in one of the new ones, started to connect the wires to the terminals, and then decided I should put the other one in, too, before I connected the wires. So, I took the second one out of the box, and . . .

Close-up of wheelchair battery. On the far side, the red terminal stands up straight. On the near side, the black terminal is bent back severely.

Augh! The terminal was bent!

I emailed the seller and asked them to send me a new one with expedited shipping and take back this damaged one for no shipping charges (because each battery weighs 23 pounds, so shipping can be pricey!). I didn’t hear back from them. The next day, I emailed them again and asked for their shipping return address and an expedited exchange. No response. Today I sent the battery back, and the shipping charges came to almost as much as the cost of the battery itself! I wrote to them for a third time, told them the battery was on the way, and asked for them to defray the shipping costs and send a new battery. I also said I was “very unhappy with your customer service.” I hoped that would get their attention, since they get feedback scores from customers.

Surprise! Very shortly after that, an actual human from the company emailed me and said they were expediting my refund, but that my shipping charges were too high for them to cover. I don’t know what will happen in the end, because we’re still discussing it. Meanwhile, I ordered a replacement battery. I hope it arrives in perfect condition!

I want to get out of my frickin’ house! AUGH!

My theory is that I was in a wheelchair karma-accident in my former life. The only positive out of the battery disappointment was that when I tried to stand up from the ground and needed assistance, Barnum did a terrific job of bracing me. He is super solid on that skill. He stands nice and square and doesn’t move a muscle. Best stand-stay and brace on any dog I’ve had yet.

Good dog! Bad wheelchair vendors. If only I could clicker train them! . . .

– Sharon, who has used a carrot for a long time and has now taken out her big stick! The muse of Gadget (I LIKED the Jet! But not as much as the scooter, which went faster), and Barnum (Sharon never takes me for walks anymore. Sigh.)


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