Service Dogs & Friends: Familiarity Breeds … Confusion? BADD 2012

This post is in honor of Blogging Against Disablism Day (BADD) and the spring issue of the Assistance Dog Blog Carnival (ADBC).

BADD 2012!

Every year on May 1, bloggers from around the world post about some aspect of disability oppression. This is what’s known as a blogswarm. Check out the huge number of excellent posts — entertaining, emotional, or educational — at this year’s BADD!

Effects on others

The topic for this quarter’s ADBC is, “How has a working dog in your life affected other people and/or the relationships in your life?”

Lately, I’ve been forced into the realization that, in many ways, raising, training, and handling my own service dogs (SDs) has a negative effect on my IRL (in real life) human relationships, and likewise, my human relationships make raising, training, and handling my SDs much harder. I have many rich, rewarding relationships with other assistance dog partners and trainers online, but when it comes to people I see in the flesh or talk to on the phone, I have no SD partner friends. Ironically, the biggest challenge comes not from those who dislike or are indifferent to dogs. No, the biggest challenge comes from those in my life who are fond of or have some sort of relationship with my dog(s) or who feel a connection to the SD world.

Here are some of the common problems, many of which overlap with each other:

• Some perceive me as an extension of my service dog. They often prioritize their interactions with the dog over their interactions with me. They may or may not have any problem with me, but still may only want to be around me to interact with my dog.

• Some see my SD as just a dog, a pet, and are either unwilling or unable to see that my SD’s role in my life is much more complex, and requires much more upkeep and care, than that of a pet dog. They want to do what they want to do with the dog because it’s fun, and it makes them feel good. The effect that their behavior has on me and my working dog is either unclear to them or less important to them than the pleasure they derive from doing what they enjoy with my SD.

• Some misinterpret behavior that I allow or encourage with my own SD as giving them special privileges to interact with other people’s SDs in similar ways. They don’t seem to understand the difference in acceptable behavior with a dog who is at home, not working, and with whom they are interacting as a house guest, with acceptable behavior with a stranger’s dog or even my dog when he is working or training.

• Some have their own relationship to my SD and feel hurt or angry if I put restrictions on their interactions because of choices I make for the good of my working partnership or training. They may or may not intellectually understand or agree with the behaviors I am requesting or enforcing, but they still find them emotionally difficult. They may also think I’m being “mean” (or capricious, or dictatorial) to the dog or to them by disallowing behavior that disrupts my dog’s manners, obedience, or ability to work but which they find pleasurable (or which they believe the dog enjoys).

Here are some recent examples of how these situations have played out. I have altered some details to preserve anonymity.

1. “I saw a service dog and thought of you.” The story I relate below has happened with other people, in similar circumstances, over the last 13 years.

A recent acquaintance who met Barnum, my service dog, at my house a couple of times mentioned in a phone call that she met a miniature poodle SD while at the grocery store. She then said, “I bent down — because I wasn’t allowed to pick her up — and she gave me many kisses. I thought of you and Barnum.”

I didn’t know the particulars of the situation, so I didn’t know the service dog handler’s policies, comfort level in asserting her needs, the dog’s job, or my acquaintance’s relationship to the handler, but hearing her say this, I felt very uncomfortable. It is a universal experience for assistance dog (AD) partners that wherever we go, our dogs attract attention. Some partners enjoy a certain amount of attention from the public as an opportunity to educate or to feel less isolated. However, almost every AD partner I know — and I know a lot of people with guide, hearing, and service dogs — hates the constant intrusions, interruptions, and distractions of members of the public asking them about their AD or talking to, petting, or otherwise distracting their AD from its job. We find the work involved with constantly interacting with people we have not chosen to interact with exhausting.

The overwhelming majority of the people who cause us so much distress do it unwittingly, with only good intentions. This is part of what can make it so hard to deal with. These kind-hearted, dog-loving people usually feel happy and excited to see a working dog and may feel a connection to that team because of their relationship with me or Barnum. They may want to connect with that person or their dog, thinking that they are offering support by way of understanding. What they often don’t realize is that the partner/handler’s experience is quite different. We deal with comments, questions, and distractions all day. We generally don’t care if your friend or niece has a SD, or if you puppy-raised once, or if you follow a hearing-dog blog.

Within an hour or two of being in public, I can have a dozen people stop me to ask, “What kind of dog is that?” “What’s his name?” “What does he do for you?” “Where did you get him?” “Can I pet him?” “How long have you had him?” “He’s so handsome!” “I have a dog, too, but he’s not nearly that smart!” “What a wonderful friend he must be to you!” “Aren’t you lucky to have him!” “I wish I could have a service dog,” and on and on.

The questions and comments are difficult enough, but at least we have some control over how we choose to answer (or ignore) the questions. What we cannot ignore, and what can often be dangerous to our safety and well-being, are people who interfere with our canine assistants. Any of the following constitutes interfering:

• Talking to the dog (or talking “about” the dog to their handler using a high, squeaky, excitable, baby-talk voice)
• Petting the dog
• Extending their hand for the dog to sniff
• Thumping the dog on the back as they walk by
• Clapping
• Whistling
• Shouting or making other sudden or unexpected movements to “test” the dog
• Stepping on, kicking, or running into the dog with a shopping cart (yes, people do these things)
• Leaning down to get kisses

Part of the problem seems to be that some people, like my acquaintance, are trying to be respectful and “follow the rules” but they don’t get the overall concept of what good “assistance dog etiquette” is. They see the dog’s “Don’t Pet Me” patches, so they don’t pet the dog, but they talk to the dog instead. This can be even more distracting to many dogs. This is why many of us are switching from patches and signs that say, “Don’t Pet” to “Do Not DISTRACT.” For example, my guess as to what happened in the case of my acquaintance who got kisses from the miniature poodle is that they asked to pick the dog up (which shocked me in itself! Fortunately this is something nobody ever has asked me, since I have an 80-pound dog), and when the handler said, “Sorry, no,” they either asked if they could “say hi” or they just went ahead and did it.

Note: Just because an AD partner tells you it’s okay to pet their dog or talk to their dog doesn’t mean it actually is. They may be so worn out by saying “no” all day, or they may have received enough hostile reactions to their “no,” that they just give up and allow it, hoping it will make things faster and easier than trying to explain why it’s really not okay.

I was particularly concerned when I heard the miniature poodle SD story because small breed SDs are almost always used for some sort of health alert. They may alert or respond to seizures, changes in blood sugar, or psychological states, such as panic attacks, PTSD episodes, depersonalization, dissociation, or other states that require the dog to be completely tuned in to their partner at all times. They are likely on the watch for a change in their partner’s smell, gait, facial expressions, or other behavior. A dog that is busy kissing someone or being petted is not going to notice these things. You cannot necessarily tell by looking at an AD whether it is “on duty” or not. It is safest for the team if you assume the dog is on duty.

I have heard, over the years, from my friends, health care workers, family members, and others that they approached strangers with assistance dogs because they “thought of you and Jersey/Gadget/Barnum.” I’m always shocked, and I’m almost always tongue-tied. I know they are acting out of fond feelings for me or my SD, but I want to tell them, “The kindest and most supportive thing you can do for any working or training team you see in public — the best way you can honor me and my 13 years of training and partnering with service dogs — is to completely ignore the dog.” It goes against human nature, I know. But it’s really what the vast majority of us want. It is certainly what I want when I’m in public, training or working my dog.

I feel very uncomfortable not knowing how to educate people when I hear these kinds of comments. They pop up out of nowhere, and not usually in contexts where I can stop what I’m doing and go into gentle-assistance-dog-handler-education-mode. So I often say nothing. Then I feel guilty that I am contributing to the problems other handlers are facing with these people who likely think I approve and support their choices to interact with strangers with working dogs.

2. A person’s relationship to my dog — as a dog, not as my working dog — is more important to them than their relationship with me.

Someone recently ended a relationship with me because we had differing desires for how he would interact with my dog and what we saw his role as being. This was someone whom I perceived as “a friend who really likes my dogs.” I thought he was interested in helping me out with them in part because it was useful to me, and in part because he enjoyed his time with my dogs. I discovered, however, that his interest was entirely in having fun with my dogs, and that he did not consider me a friend. This has been a painful discovery for me.

I thought we were friends with a long history of a shared love of my dogs. I knew that there were sometimes conflicting desires about how he wanted to interact with my dogs versus how I wanted them to interact together, but I thought we had the same goal of me having healthy, happy, good working partners. In a recent interaction where this person explained his perception of our relationship, he said that his only sadness was that he would not be interacting with my dogs anymore. He did not feel sad that we had ended our relationship with conflict.

In this conversation, he referred to my service dogs as “your pets.” To me, this explained a lot.

Our disagreements always involved my requesting him to require certain standards of behavior from my dogs. Not to jump up to greet him was one. Not to pull on the leash was another. To sit before and after exiting the vehicle. These rules were for my own and the dogs’ safety, for the dogs’ sense of stability in knowing what was expected of them in all situations, and for their ability to retain the behaviors I needed in my canine assistants.

However, this person and I had different agendas, and it’s only now that I realize how big that difference was. When I saw him allowing, or encouraging, my SD to jump up on him in greeting, I thought that he just didn’t understand why that was a problem, that I hadn’t explained it fully enough. So, I would explain again. I learned, eventually, that he did know that I didn’t want this behavior, but he wanted it, so he “snuck it in” when I wasn’t looking. It was their little secret, between them. This worked alright with my previous SD, Gadget, who was able to distinguish what behavior was allowable with this person only, and what was required with everyone else. However, Barnum, whom I’ve raised from puppyhood, doesn’t make these distinctions as easily and generalizes more. Therefore, it’s very detrimental to his training to have jumping up allowed or encouraged, ever.

Similarly, for the past two years one of my helpers and I have spent hundreds of hours working on loose leash walking with Barnum. I have worked with everyone in my household who ever has Barnum on leash for a split second about how to preserve this training. I couldn’t understand why we could never maintain our progress. Then I discovered that this guy was allowing, or even encouraging, excited behavior which involved, or led to, pulling on leash. I explained again, as I had so many times, why it was important not to let Barnum pull. That was the end of our relationship. He let me know that his interest was in having fun with my dog. Having fun did not involve having to follow my rules for interacting with Barnum.

Of course, everyone has different needs and desires in a relationship. I can understand that some people just want to have fun with a “pet” and not worry about the impact their behavior has on that dog’s person. At the same time, none of the dogs this man knew were pets. They were all working dogs. Canine assistants. The equivalent, for legal purposes, of assistive technology. My SDs make my life safer, less physically painful or exhausting, assist with my communication with others, and provide me with more independence. I almost never leave my house. I am confined to bed almost fulltime. I don’t get to socialize with anyone IRL, except my PCAs and part of my family. In other words, my life is extremely confined, constrained, and limited. Any tiny drop of increased energy, decreased pain, or increased freedom is unbelievably precious to me. And anything that interferes with my dog’s ability to provide this assistance is very painful — sometimes unbearably and heartbreakingly so. I have been without a fully trained assistance dog for three years — since Gadget’s cancer went out of remission in 2009. Sometimes I just can’t stand how long it’s taking, and how unbelievably hard it’s been, to train Gadget’s successor. Knowing that someone I considered a friend doesn’t care about that at all really hurts.

To know that someone I thought of as a friend prioritized their unalloyed fun with my dog over my ability to finish training my dog to improve the quality of my very limited life is quite painful.

3. A person’s relationship to my dog is often intertwined with their feelings about, or relationships with, their parents, their children, their inner children, their own animals, etc., and when I don’t allow them to interact with my SD in ways they find emotionally comfortable, soothing, or pleasurable, they sometimes get very upset.

Sometimes these people are aware of the emotional triggers taking place and can talk to me about it. Then we can talk about what’s going on for them. I can try to empathize with them while also taking care of my own need for my dog’s behavior to be under my control. I hope they will be able to hear me when I explain the practical reasons why I’m asking them not to talk to or pet the dog, let him jump on my bed, beg for food, get treats, etc. Sometimes we can understand and support each other. Sometimes I end up feeling very lonely and exhausted by having to defend my methods. I worry that people in my life think I’m being “mean,” or that I’m just making up rules because that’s fun.

The bottom line in all these situations is that I wish people would understand that my service dog is not a pet. He is not a toy. He is not in their life for their entertainment. Yes, very often my dog and the people in my life share play, love, and affection. I really enjoy when people in my life love and respect my dogs. But, foremost, I want them to recognize — and act accordingly — that my dog is in my life to help me lead a safer, more independent, healthier, richer life. Lately, I look back with longing on the days when I trained my previous two dogs pretty much in isolation. When I lived alone and did not have assistants and carers in my home most of the time. The lines of communication were much clearer with my dogs.

However, back in those days, I was not nearly as sick and disabled as I am now. I no longer have the option of relying primarily on my service dog and my self to survive. For better and for worse, I have people in my life much more of the time, and for better and for worse, these people interact with my service dogs or dogs-in-training, and I have to do constant training and management not only in training my SD, but with these people in how they interact with my dog.

– Sharon, the muses of Jersey and Gadget, and Barnum, SD/SDiT

Hackers Have Gotten Smarter: Some Tips for What to Look For

And in other inexplicable computer news, this post got published with NO CONTENT, and without me hitting the “publish” button. Argh! (Deep breaths. Deep breaths.)

Here are some things the hacker did that made it harder for me to clean up the mess and that tricked some people into clicking the link:

1. They did it during the night. At 4:30 EDT, when I was asleep. Not that it took them more than 20 minutes to email all 1000 people in my address book, but if I had started getting those bounces when I was awake, I’d have realized something was up sooner.

2. This one is key: They only put in five or six addresses per email. The main reason to do this is because AOL has bulk mailing policies to prevent spamming. If you email more than ten people in one email, it can trip it. If you email many people in a few emails, it will trip it. So, AOL didn’t shut down my account and stop them.

3. Putting only a few addresses in an email also tricked some people who received the email into thinking it was legit, because we are used to spam emails having very long To: lines. Someone even said, “I clicked on the link because it was from you and there were only a few people it was sent to.”

4. They put a different subject line in every post, so I couldn’t just email everyone and say, “If you got an email that says “blah blah blah,” delete it. (I also didn’t want to email everyone because then I would be bulk mailing, AOL would shut down my account, and I would again have over 400 bounces to delete.)

5. They put a signature line in. Not my signature, but every email had some sort of random quote in the signature field, so it looked more authentic, if I was the kind of person who quoted people in my signatures (which I’m not, but a lot of people do).

Moral of the story, kids:

If you get an email with a link, and basically no info as to what the link is about, do not click the link! Email the person whose account it is from to find out if it’s legit or if they’ve been hacked.

This is particularly true for anyone you have not heard from in a long, long time. Someone you interact with frequently, you know what they have in their signature line and you know what they’re involved with. It’s easier to spot a hijacked email. If you get an email from out of the blue from someone you haven’t interacted with for a long time, that is a big red flag right there.

When in doubt, DON’T CLICK ON THE LINK. It doesn’t matter if it’s from someone you know. That’s why hackers steal others’ accounts!

– Sharon

P.S. If you get another fishy email from me, please tell me. There still seems to be the occasional fishy thing happening, and I can’t tell if it’s just delays in certain emails being process, or if my account has been breached again.

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: 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 Wednesday: The Chair! AUGH!

I just . . . I can’t even. . . . WTF, people, WTF? I’m incoherent with frustration. At. The. End. Of. My. Rope.

Spent all of Monday going to people who built it. SAID they fixed it. Brought it home. Plugged it in. Next morning, dead. DEAD!

They are offering another solution that I don’t think will work. Don’t know what to do. Beside myself.

If there was any other freakin’ option for a powerchair that can handle rural conditions and doesn’t cost as much as a sporty new SUV, I would take it. AUGH!

I don’t want advice, I just want to vent. I just want to be able to take Barnum for walks!!! Why should that be so frickin’ hard?!?!?! AUGH!!!

For now, I’m sleeping on it. I have some ideas for gathering more information, too.

I’m overloaded with too many other things to work on right now, anyway — training Barnum, various writing projects, NVC homework — so it will just sit there like a useless behemoth until I decide what to do next. That is all.

– Sharon, the muse of Gadget (her old chair worked for me), and Barnum, SDiT (why don’t you take me to the pond anymore?)

P.S. AUGH! AUUUUUUUUUUGH! AAAARRRRRRGGGHHHH!!!!

On Grief: It Helps When You Say…

I recently wrote a post about how much I’m grieving, how sad I am. Writing the post, itself, was a very important step for me. It was cathartic, and there was something about being able to say in a public forum, “I am hurting,” that was healing. I got some responses I found supportive and helpful.

I also got some responses that triggered feelings of anger, frustration, and loneliness. I wished I had never read or heard these comments, but since I had, I wavered about how to respond to them. Part of me wanted to ignore them. Another part of me wanted to respond by indicating that these responses were not helpful because I wanted to head off similar comments.

Part of me wanted to respond with a snarky post, such as a bingo card (which I still might do for other reasons or on other topics, because I love them so much — see examples here, here, and here. Oh, and what the heck, some nondisability bingos here). However, I am studying nonviolent communication (NVC), which has really changed my perspective on communication and how I try to communicate; I have learned it is often much more helpful to tell people what I want than what I don’t want. I was trying to think of how to respond in an NVC way and finding the mere idea baffling and exhausting.

Then I read this amazingly thoughtful post by Lisa Bonchek Adams about a list that appeared in the New York Times of what not to say to someone who has cancer. Lisa agrees with some of the listed items and not others, but her main point is that she never made a list of what to say or not to say for some very specific reasons. Her reasons make so much sense. (The comments from her readers are also full of terrific insights.)

One reason she gives is that people are already nervous about how to respond to someone who is seriously ill (and I would add the same is true for those going through any sort of crisis or who express strong “negative” feelings) and worry about saying the right thing. By telling people what not to say, you are contributing to that nervousness, which increases the chances of them saying nothing, which is often the worst thing.

Second, she says it really makes a difference who is saying it to you and how it is said. I absolutely agree. For example, I usually hate getting unsolicited advice from most people. However, sometimes suggestions are welcome if it’s someone I am very close to who is also chronically ill.

Third, she says the most important factor is that the person’s expression is honest. There is a lot of truth to this, although I don’t agree 100 percent. I don’t always want to hear someone’s honest thoughts, feelings, or opinions, either, depending on what they are, but better at least that they say something heartfelt and honest than that they present a platitude.

I strongly encourage you to read the post and the comments.

This topic is going to keep coming up here, not just because I will always be chronically ill, but because right now I am finally unearthing my feelings of grief that have been “frozen” for several years. I have a lot to grieve: my service dog’s death, one of my best friend’s death, the deaths of other friends, the “parting of ways” of my two very closest friends and several other friends, the multiple and devastating losses that have accompanied my new disabilities and illnesses associated with tick-borne disease, and more.

Some of these losses happened during times when I was literally struggling to survive. I didn’t have the luxury at that time of grieving. Then, there were losses that happened so close together that I was completely overwhelmed, unable to process any of them (such as the three-week period where I went through a PTSD-inducing natural disaster, my best friend stopped speaking to me, one of my other best friends died, and my therapist terminated with me against my wishes and with no referral).

I was numb. That was how my body/mind enabled me to survive — numbness. I didn’t have a choice, nor should I have to defend how I coped, but I found that when I was honest with people about being numb, their response was usually to tell me not to feel that way.

Lots of people told me, when I was dealing with some of the more public losses, such as Gadget’s death, that I should cry, I should journal, I should let my feelings out. This was beyond unhelpful. For one thing, I wasn’t able to do these things. Everyone grieves in their own way, and usually the best you can do is to just follow where your feelings lead you and try to honor them.

I actually tried to force myself to feel, to cry. It didn’t work. I couldn’t do it. I was still numb.

My therapist told me that there was a reason I was numb, and that it’s a normal way to grieve, and that I would be doing myself a kindness to accept that this was the coping mechanism I needed to survive. She also encouraged me not to spend time with people who told me I was grieving wrong.

The other problem with telling me I shouldn’t be numb, that I should cry, etc., is that they laid a burden of guilt on me. Instead of hearing compassion and understanding, I heard judgement: “You should cry. You should journal. You should let it out. Because you’re not grieving this way, you’re grieving wrong.”

“Should” statements are never helpful. Really. Even if you are offering a heartfelt suggestion and have been given permission to offer advice, don’t use “should.” Use, “I have found that it helps me to” or “have you considered?”

Now, I am having my feelings and expressing them. I am crying. I am feeling sad. I am also feeling angry, frustrated, hurt, lonely, and all sorts of other permutations of pain. This is because I am grieving. Grieving can encompass any emotion, and it can come at any time after (or even in anticipation of) a loss. There is no right or wrong time for grief; it happens in cycles, in stops and starts, over short periods and long.

The irony is that I am finally doing what all those people told me to do in the last several years, and I’m hearing negative reactions to this, too! I’m being told to buck up and look on the bright side and move on. I feel really angry about this.

All of this has led me to think: “What do I want to hear when I am expressing suffering or pain? When I am grieving, whether it is in a way that is perceived as acceptable or not? When I am numbed out or when I bawling? What have been the most helpful comments people have said on the phone or posted on my blog?”

The answer is that I want to know that my feelings are welcome. That the other person wants to listen. That they are okay with whatever I am going through. That I can just express myself without having to worry about their needs for the moment. That they care.

“Thank you for sharing this with me,” and “I’m so glad you told me,” are two examples of comments people have made that felt very welcome. I just feel a sense of opening and relaxing and relief: “Okay, it is safe to share with this person. I can be myself. I can even test out if I can say more.”

“I appreciate knowing what’s going on for you” or similar permutations indicate that the feelings I’ve already shared have been heard and received and held tenderly. They also suggest that it’s okay to share my feelings or experiences again. I think I particularly need that latter message, “I am open to your expressions of pain; it is not too much for me,” because so many people abandoned me in the last few years, and the message I internalized from these abandonments is, “Your distress, and the way you express it, is wrong, bad, and too much. You drove me away with your overwhelming feelings.”

I think that’s another reason I’ve been numb for so long. After hearing the message so strongly to shut up and not burden people with my pain, numbness was a self-protective mechanism.

Having other people tell me not to be numb didn’t help, because I just filed it away under, “More things I do wrong that drive people away.”

Telling me, “Thank you for opening yourself to me. I will hold what you say with care. You are welcome to come back to me and ask if you can share more of your feelings,” helps me feel brave enough to try to open up again.

Enough of you have said often enough in your comments that you appreciate what I say, that I have the courage to write this post and others like it. That I am able to keep trying again. Thank you for that. It has meant more than I can say. It has meant that I am finally able to feel wretched and sad and grief-stricken. This is truly a gift.

– Sharon, the muse of Gadget, and Barnum, SDiT (who gave me lots of kisses today)

Waspish Wednesday…Works? CAPTCHA News

A few weeks ago, I did a Waspish Wednesday post about CAPTCHA, otherwise known as “word verification” or “image verification,” which is a “feature” on many blogs and other online sites wherein the user has to type in a distorted set of letters and/or numbers in order to be able to post, comment, enter the contest, pass through the wall of flame without being consumed, etc.

Here are two examples of CAPTCHAs:

Most CAPTCHAs started out like this, only much less legible.

Now they usually look a little better, like this, but less legible.

CAPTCHA is extremely problematic for many people with a range of disabilities, including — but not limited to — blindness, low-vision, deaf-blindness, learning disabilities, cognitive impairments, visual or auditory processing issues, neurological disabilities, and fine-motor/coordination issues.

I wrote the post to raise awareness of this issue for other bloggers, asking them to remove CAPTCHA from their blog’s comment verification. I do know at least one person removed their CAPTCHA. Yay!

A few days after that post appeared, I got a comment from someone who seemed to be promoting his CAPTCHA-beating software. I deleted it as spam.

But he was persistent. A few days later, he used the “Contact Sharon” form and wrote to me personally. He offered me a trial year of his software free. I knew right away that I didn’t want to take him up on his offer because new software scares me; it always seems to make something new go wrong. Also, I believed that other people had greater need of his offer than I do.

I thought about asking if one of my readers could receive this offer instead, but I felt mixed about it. From an ethical perspective, I don’t believe that individuals purchasing software to get around CAPTCHAs is the answer, because that means that only people who can afford/access this software get around CAPTCHAs which are, by their nature, discriminatory. It’s an individual solution, not a systemic solution.

On the other hand, from a practical standpoint, if something exists that can make this inaccessible internet world more accessible to some people with disabilities, we/they ought to have the choice to try it, or at least to know about it.

So, I wrote back to him. Here’s what happened:

Mateusz Markowski (who I don’t know at all and had never contacted me before), wrote to me saying that he read my post about how CAPTCHA is inaccessible to people with certain disabilities, and . . .

[T]hus I’m writing to you, since I’m a developer of a new Firefox add-on called Captcha Monster which automatically handles completing CAPTCHA tests. Users don’t have to even think of CAPTCHAs, since the plugin will find the image, read it and put the correct text in the right field. No interaction is required.

The add-on currently works only with Firefox web browser, but is capable of learning new CAPTCHA tests and currently solves them on most of the websites. The time of solving is less than 9 seconds for each image.

If you’re interested in this add-on, please visit its website http://captchamonster.com and feel free to contact me with any questions. If you decide to mention or review the add-on on your blog, I’ll be happy to offer you a free one-year subscription to the add-on!

I wrote back and said:

I’m not personally interested in trying out this software, but if you’re game, I will see if one (or more) of my readers is — with some strings attached (see below).

I have many readers who have disabilities that prevent them using CAPTCHA. Some of them are blind or low-vision, others, like me, have neurological issues or other physical disabilities that make CAPTCHA a problem. Then they could beta-test it for a year.

If you want, I could offer it to several readers to test it, and then you could get feedback on whether it is truly usable, friendly, and accessible to a range of people who have problems with CAPTCHA.

My agreement with you would be that after the test period is over, the person/people who used it would provide feedback on how effective (usable, accessible, and friendly) they found the software, which would not only go to you, but to me, and I would post those responses/results. If you wanted to respond with whether or how you could fix any problems the users/testers found, I would probably publish that, too unless I found something ethically repugnant in it).

The reason I said I wanted the option of posting the feedback from the beta-tester(s) is that if the software is NOT helpful or accessible, I don’t want people to read this here blog and think it is and be misled. On the other hand, if it is helpful, that could be useful for people who want the option of buying a plugin to make CAPTCHA less onerous.

Here is Mateusz’s reply:

The agreement sounds promising to me, since the feedback from users is really a desirable thing for a developer. I will appreciate all the suggestions and will do my best to make the add-on more useful and accessible.

I have created a test account for the people who would be eager to test the Captcha Monster. The account will be active for one year and there is no limit of users who could is it at the same time. However, I will ask you not to share the credentials publicly, but only to people who are interested in testing, since the account could be abused.

E-mail (login): XXXX

Password: XXXX

If any of people who you ask for a feedback stumbles upon any technical difficulties, I am always ready to help!

Best regards,

Mateusz Markowski mateusz@captchamonster.com

So, that’s the deal, folks. If you want to try Captcha Monster (I have to admit, it’s a cute name), use my Contact Sharon page to send me a note, and I will hook you up with the super-secret email and password (ooh). Then, try it out for a year. And if you have any problems during that time, email Mateusz, and tell him what is or isn’t working, and he will try to fix it.

I’m hoping this will be a win-win-win for all involved: Mateusz gets valuable feedback on his product, and a bunch of people maybe can get around the internet easier by using this software, and perhaps — if Captcha Monster catches on — it will make CAPTCHA useless enough that websites will stop using it, which would be great for everyone!

Before I close, my disclaimer: I have no personal investment in, nor do I gain anything from, this product. I know nothing about it other than what I’ve posted here.

If you have a problem or question regarding Captcha Monster, please contact Mateusz, not me! I hope this is useful!

– Sharon, the muse of Gadget, and Barnum (She’s making clicky-clacky noises on that black thing while she looks at the glowing box again. Sigh.)

P.S. Some warnings and notes from readers since this was originally posted: 1. Captcha Monster can only be used with Firefox, so if your screenreader is not compatible with Firefox, this won’t be of use. 2. Be aware that this is an untested software, so you are taking a risk in beta-testing it. 3. This note courtesy of Vomit Comet (thanks, guys!), “Warn everyone wanting to test this thing, do not update to ff5 yet. It is considered incompatible.”

P.P.S. To reiterate: This is not a systemic solution for an access problem, because only some people can use this product, so it may only help some people. If some people have to pay for access, that is not real access. The real solution is to eliminate all CAPTCHAs on the web. I hope everyone will continue to eliminate CAPTCHAs wherever they have the ability, and to complain about them elsewhere, to make the web more truly accessible.

Waspish Wednesday: Yes, Lyme DID Cause This

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not that I expected it.

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

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

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

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

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

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

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

BADD 2011: Please Don’t Send Me This Video

[Note: I wanted to write this post for last year’s BADD, but I couldn’t finish it in time. (Instead, here is my 2010 BADD post.) What a painful irony that I should finally be tackling this topic, while I’m facing the question of whether I will have to wash out Barnum, my service-dog-in-training (SDiT).

BADD 2011!

Welcome to my International Blogging Against Disablism Day 2011 post! I love writing, and reading, the BADD posts, and I know you will, too!

Every year, on May 1, bloggers from around the world post about disablism, or as it’s usually called in the US, ableism. Dis/ableism is the oppression of people with disabilities (PWDs). Ableism is so omnipresent, omnippressive, vast, and insidious, it’s almost impossible to explain to people who don’t live it. So, please, read the other BADD posts and learn!

Now, on to my topic!

I wanted the full title to be: “Dear Well-Intentioned Person, Please Stop Sending Me This Video,” but that was too long.

I also noodled with a more sarcastic title — “Wipeout! The Inspirational Washout Video” — but given what I’m going through with Barnum, even I can’t find humor in this topic.

The Onslaught of Well-Wishers

It all started a year-and-a-half ago, shortly after Gadget died.  I told friends and acquaintances (on Facebook, on my brand-new blog, in my online chronic illness communities) that I planned to get a puppy to raise as my third service dog (SD).

Following that, for months, many many people sent me the link to a youtube video called “Inspirational Video: Turning Disappointment into Joy: SURFice Dog Ricochet.” Essentially, this video glorifies a program-trained SDiT washing out. There’s more to it, but that’s the main storyline.

Those who sent it to me clearly had no idea how problematic the video is, itself is — how ableist — and therefore offensive to me as a PWD. But even worse was how inappropriate it was to send this video about a SDiT washing out to me, a PWD about to embark on training a SDiT puppy.

The first time I watched it, I was crying by the end, and not in an “inspired” or “joyful” or “special” way, but in a wretched, hurt, sad, frightened, disbelieving way.

People kept sending it to me. I thought it would never end.

Who sent it to me? All sorts of people, with “dog people” being, by far, the most common. There with two notable exceptions; these people did not send it to me:

1. Assistance dog partners. All of the dog people who sent it to me were companion dog (pet) people, not SD people.
2. disability rights (DR) activists. While many of the people who sent it to me do have disabilities — in all cases, chronic illness — none of these folks identify, as far as I know, as members of the DR community.

The type of comment I got when someone sent me the video was, “I saw this, and I thought of you!” Or, “I know this will bring a smile to your face.” My jaw would drop, my stomach would turn over, and a lump would form in my throat. I didn’t reply, because if I did, it would have been the text equivalent of either sobbing or screaming obscenities.

I didn’t want to do that because I knew they meant well. I was too addled by grief to try to attempt any sort of educational effort as a response. So, I just stayed silent, and I felt very alone, with all these people trying to comfort me contributing to my sense of isolation. That was perhaps the worst part. I truly believe that everyone who posted this to me did so because they thought it would make me happy.

How can so many well-intentioned people be so painfully misguided?

Well, that’s one of the most common forms ableism takes, actually — causing harm to PWDs with the best of intentions, often “for our own good.” In the name of “our own good,” PWDs have been (and still are) forcibly sterilized or institutionalized, subjected to constant and oftentimes humiliating scrutiny to “prove” we are disabled and therefore worthy of services and equipment, denied access/accommodations and medical care and equipment, and on and on. Obviously, sending me an  upsetting link is not equivalent to putting a young disabled person in a nursing home instead of providing them the tools to live independently, but they both involve a lack of insight into what is most needed and wanted, a failure of imagination, at the least.

The portrayal of PWDs in all forms of media reflects these attitudes of paternalism, which is essentially nondisabled superiority with a soft-focus lens. Every day, you can find blogs, newspaper articles, TV shows, and movies making use of these most common ableist tropes:

• PWD overcomes tremendous obstacles to do truly amazing thing (Inspiring! Courageous!), AKA the supercrip trope, e.g., person with severe physical disability scales humongous mountain, person with chronic illness hosts wildly popular TV show.
• PWD is amazingly inspiring (and also pathetic) because s/he does mundane activities most people do every day, AKA the posterchild trope, e.g., man with intellectual disability works at his job! Blind woman rides a horse!
• PWD as embodiment of a morality tale (“There but for the grace of God go I”) of either complete goodness and purity and innocence, AKA the Tiny Tim trope, or evil (“twisted” or “crippled” personality by their disability), AKA the Captain Ahab/Captain Hook trope.
• Nondisabled person/charity/institution speaks about and “on behalf of” PWDs, e.g., the parents of a disabled person are interviewed, but not the PWD himself; the social worker, priest, charity, or other members of an organization “serving people with disabilities” are lauded for their “good works,” keeping PWDs in the role of client/charity case, and therefore disempowered — the passive recipient. This is where a lot of the damage is done “for our own good.”
• The cure trope (often coupled with the trope above), where a charity is featured that “serves” PWDs, usually as a fundraising/publicity effort. Those who do most of the talking are the nondisabled staff, but often one PWD is used as an inspirational centerpiece. The needs and rights of people living with that disability now are ignored completely or relegated to a low priority. The pinnacle of success of the cure trope is usually a wheelchair user who stands up or walks.

In most of these representations, the main role of the PWD is to be viewed, gawked at, stared at, presented, examined. The PWD is presented for entertainment value (whether that be “inspiration” or pity or revulsion), not as an actor/doer, but as a subject.

These ideas don’t just stay in books or on the screen, of course; they live in people’s minds. They are evident by the way people stare at me or point at me or talk about me as if I’m not aware of their comments.

They come out of the mouths (or are typed by the fingers) of the many people who have told me I am “brave,” “courageous,” “inspiring,” and other disability-stereotype buzzwords, just for living my life, as well as all the people who have told me I should be trying harder to cure my disabilities, or that I am disabled because I’m on the wrong spiritual path, or applaud me for “Keeping your sense of humor” (because automatically my personality would change when I became disabled?) or ask me, tremulously, how I have managed to “go on.” (Because it’s the only option, other than suicide?)

While concepts of inspiration, courage, etc., may seem to be complimentary and beneficent, they are actually extremely damaging because they “otherize” PWDs. Tucked into that package of amazement and “admiration” is the message, “There must be something intrinsically different about you that caused you to become disabled/is the result of your disability, and therefore, since I am ordinary (not an inspiration for just existing), I am normal and will not become disabled. You are scary and different; I can distance myself from my fear of disability by perceiving you as sub/superhuman.”

Do I think everyone who says these things to me is consciously and intentionally trying to be oppressive? Absolutely not. I think most probably have internalized these fears and negative ideas about disability without awareness; nonetheless, even while they are saying what they believe to be complimentary (or at least, insightful or helpful), these beliefs and feelings are entwined in their message. Please keep these tropes in mind when you watch the video!

The people who say these things are, in other words, well-intentioned, just as — one assumes — the makers of this video are, and the hundreds of thousands of people who wrote gushing, soppy responses to it. I can’t help but think of one of my dad’s favorite expressions: “The road to hell is paved with good intentions.”

Since there is no dialogue, just a song with occasional titles/captions over the images, I’m not providing a captioned version.

Read the transcript/description of the video here (including lyrics to the song).

View the video below:

Things that Make You Go “Hmm…”

Having just watched the video over and over to transcribe the text, images, and song lyrics (which I hadn’t paid much attention to previously, as I’m really not a music-oriented person), was not only extremely unpleasant, but revealing. There is so much here to dismantle in this five-minute video, from a disability studies perspective (and also from an assistance-dog [AD] training perspective), that I could write a small book on it, but I don’t have the time, energy, or emotional stamina for that, and you have other blogs to read.

Therefore, I’ll just briefly raise some questions you might wish to consider. Several of these questions cannot be answered without knowing more details about the dog and trainer than you can learn from a five-minute fundraising video, but they are interesting to ponder. Feel free to discuss them in the comments section!

• What do you think of Ricochet’s body language when she is surfing? The video says, “She was a different dog when she surfed with Patrick, totally joyful and 100% committed to her new direction.” Does Ricki look “totally joyful” to you? Does she look like she’s enjoying herself as much as she does when performing service skills or chasing birds? Is that tension and posture just the result of concentrating and balancing, or does it speak to her emotional state? (I really don’t know. I’m not a behaviorist or expert in reading body language, but to me, the only time she actually looks joyous in the water, is when she is off the surf board and running to her trainer.)
• Why does Ricochet learn to surf as a puppy if the bird-chasing problem only became apparent when she was an adult? Was surfing a body-awareness exercise all the puppies went through, or was Ricki being groomed for stardom? (Again, I honestly don’t know.)
• Was Ricki’s bird-chasing habit really reason enough to wash her out? Given how happy and skilled she seems to be at doing service work, and given that the only evidence presented is one shot of her running across a huge expanse of unfenced beach, might it be possible that if she were on a leash or in a fenced area (as is usually required by SD programs) this problem could be managed, much the same way that guide dog schools have to manage graduates who want to chase squirrels?
• Were any of the program’s clients (the disabled people waiting for dogs, which for almost all programs is years of waiting) consulted as to whether they could handle a dog with a lot of prey drive? Doesn’t the decision by the (apparently nondisabled) trainer that Ricki’s prey drive would be “a risk to a person with a disability” sound a lot like, “keeping this dog for myself for their own good” as opposed to including PWD in the decision? Personally, Ricki’s the kind of problem I’d welcome (especially since I’ve already had three squirrel-chasing dogs and a current bird-obsessed dog)!
• Given that Ricki has now raised hundreds of thousands of dollars for various causes as a staff member of this AD organization, will videos like this inspire other AD programs to train star dogs to perform publicity stunts as a fundraising gimmick?
• The video’s message is that the trainer washed Ricki out of the program so she could just “be,” so that Ricki would be happy and chase birds. In what way does surfing resemble chasing birds? Given how people-oriented this golden is — the two times she looks happiest as an adult in the video are greeting Patrick and reuniting with her trainer — why is surfing a more desirable career for her than partnering with a disabled person? How is she just “being” as a working fundraising-trick dog any more than as a working service dog? Why is surfing with a PWD to provide balance (or surfing for the cameras and in contests) suitable work for this dog, while retrieving items and opening cupboards wasn’t? If the trainer wanted Ricki to truly “follow her bliss,” why didn’t she rehome her with a hunter, so Ricki could be a gun dog, and chase birds as her job?
• Do you think the narrator’s “inspirational” lesson about how, when she let Ricochet just “be,” the dog “flourished,” and the narrator realized, “She’s perfect just the way she is!” Is intended to extend to Ivison? Or is the take-home lesson the opposite — that while the dog is perfect just the way she is, the PWD, Ivison, has to struggle to become nondisabled in order to achieve his potential?
• How do fundraising considerations, and a history of paternalism, affect decision-making about dog placement in programs run by nondisabled people?

Enough questions to make you think. On to my main focus — the two themes I started with:

1. What it was like for me, personally, to watch this prodigy puppy wash out while I was struggling to raise a very non-prodigious puppy for myself, and
2. The most blatant of the disability tropes that surround the representation of Patrick Ivison in this video.

No, My Worst Nightmare Does Not Bring a Smile to My Face

If you had charted my feelings when I first watched this video, here’s what it would have shown. First, I was interested. “Ooh, something about training and service dogs. Sounds good.”

Then, I felt excited, thrilled, happy — watching Ricochet as a young puppy looking like she is having the time of her life; when she is training, her body language is full of happiness and enthusiasm. The trainer uses positive methods. So far, this is legitimately inspirational for those of us training SDs about how well it can go. “Wow,” I thought, “I wonder if my puppy will be as smart and motivated as that! My first time starting ‘from scratch’ — with a puppy instead of an adult! Look at the possibilities!”

So much hope, and so quickly dashed: “What’s this? She’s not graduating? Just because she chases birds off-leash? WTF?”

That’s when the disbelief sets in: “No! This magnificently smart, eager, talented, raised-from-day-one puppy washes out? What the hell chance do I have? This can’t be happening! That dog on the screen is the epitome of a SD!”

Then, with the surfing comes confusion: “She does not look happy on that surf board. And why was she being trained to surf as a puppy if the surfing came in when she was pulled from the program? Why is surfing the answer?”

When Ivison entered the picture, I regained a little bit of hope. Maybe the two surfers — human and canine — would pair up. Maybe Ricochet would be placed with him and be a service dog after all — a SD who assists with surfing, as well as other tasks — a win-win for everyone! My optimism turned sour at the media spectacle, and the realization that Ricki and Ivison’s pairing was a fundraising stunt.

By the time the “physical therapy” session closed at the end, I was in shock. I felt disgusted. I felt scared.

Why did this video rattle me so?

It is the lurking fear of most PWDs training our own assistance dogs that, after years of intense physical, mental, and emotional work — time, money, and unbelievable emotional investment — the dog will not be fit for duty. The reasons a dog can wash out are almost endless: a health condition, a temperament problem, or some of the personality traits I’ve been struggling with in my own SDiT.

Not that I or any other partner-trainer I know spends all our time fretting about this. We get on with the work, but it also informs almost every decision we make, because we are trying so hard not just to train the perfect SD, but also to prevent training a washout.

I am, after all, training my third SD, and this is the first time I am seriously considering that I might be facing a washout. When I was a student and teacher of self-defense, we had a saying: Feel the fear, and do it anyway. That is what it is to owner-train an AD. We take on this enormous project upon which so much rides, knowing it might all fall down, and we do it anyway. Many of us do it time after time, even after washouts. But it takes a serious toll.

I’ve recently come to realize how little people who are not in my situation understand what’s at stake for me — even close friends and family. A couple of days ago I told one of my PCAs that I might be washing out Barnum. As everyone does, her first question was if I was going to keep Barnum. I told her that was my intention.

“Well,” she said, laughing with relief, “that’s the most important thing.”

I just turned away. What was I going to say? “You’ve worked for me five years, become like a member of my family, helped raise and train Barnum, and you’ve just told me you have no understanding of what his role is supposed to be? This huge part of my life, functioning, and identity isn’t visible to you?”

Here is the best analogy I can come up with for training your own SD. Imagine spending over two years, devoting most of your time and energy every day to creating the most complex piece of assistive technology you can imagine. It’s a combination multi-function piece of assistive technology, spouse, and medical treatment.

This technology will combine medical benefits, providing pain relief, fatigue reduction, protection from chemical exposures and exertion, anti-anxiety and anti-depressant medication without side-effects. It also will act as a communication device when you’re speech impaired and for distances when you are immobile; it is mobility equipment, powering your manual chair when your powerchair is unavailable, acting as a PCA to help you transfer or steady yourself. It has a panic button, alerting others to your need for help or providing you the phone. It acts as an extension of your arms and legs, allowing you to make a meal or leave the house or leave your bed or carry on a conversation you otherwise couldn’t do.

Along with all this, it is a combination best friend, spouse, roommate, and child, so you are also trying to foster the perfect relationship. This “project” is worth tens of thousands of dollars in labor and materials.

You work on this combination ultimate medicine, environmental control unit, and marriage for years, knowing that at any time, something unforeseen that you have no control over — an attack by another dog, a genetic mutation, an illness, a behavioral problem, or just a combination of subtle factors that add up to a unit that malfunctions on occasion — will cause the whole project to implode.

Then you’ll have to decide, do you start over again? Do you give up? Do you make do with a technology that can only provide some of what you need and may prevent you from getting the whole package from another model?

Meanwhile, everyone who knows you — often people who only have heard about this project you’re working on — are invested in the outcome, even when they try not to be, because they know it’s so important to you, and they have developed an affinity for your project and have their own feelings about it. They judge your abilities to create this magic machine. If you say you think the machine might be malfunctioning, they tell you your judgement is impaired because you liked the previous model so much.

So, not only do you have the pressure of all that you need and want in increased safety, freedom, independence, functionality, and reduced pain and fatigue riding on your success, you have this intense emotional bond that you need to consider breaking, and your own uncertainties and deeply conflicted feelings about your abilities to be objective in evaluating the performance of this combination medical equipment and life-partner. You have people eager to tell you that this or that potential major flaw in the machinery is really not as important as you say. You have other people who are ready to say, “I told you so,” and point out how, as a disabled person, you really have no business trying to create your own magic machine, you should leave it up to the (nondisabled) professionals who have been building these machines for years and know what’s best for you better than you could ever do. (After all, you’re disabled! You can’t possibly be competent and objective about your own needs!)

All of this is built-in to the process of training a SDiT for me, and — except for some of the particulars about type of service work and impact on functionality — for all partner-trainers. This comes with the territory every time I train a SD. But, some unique issues were facing me when this video started arriving in my inbox so often.

The timing was disastrous. The video went up two days before Gadget died and went viral in short order. Thus, people started sending it to me when I was utterly wrecked by grief, longing, despair, and frustration at suddenly losing so much of my functionality. Seeing Ricochet, this fantastic SD, being withheld from a PWD on a waiting list was very painful.

However, even worse was when I was still getting the video after Barnum was a few months old. Of course, I chose not to watch the video most of the times it was sent to me, but since many people didn’t name the link before they sent it, I didn’t know what it was until I’d clicked on it and it had opened.

There I was, struggling with a pup who was the same age or older than the puppy prodigy on-screen. While I watch Ricochet turn on lights, open doors, and unzip sweatshirts, I’m all-too-aware that my SDiT is still peeing and pooping in the house, showing stress and confusion when asked to “down” and “sit,” and jumping on and mouthing people’s shoes or hands or pants. Seeing Ricki washed out was a very, very bitter and scary pill to swallow.

The “Charitable Cause”

This is delicate ground to tread, and I do not want to contribute to the oppression of another PWD. Before I discuss the second half of the video, I want to make clear that I know nothing about Patrick Ivison, his wants, needs, priorities in life, or how much influence he had in the creation of the video.

I’m discussing this video as a piece of influential media (it has been viewed over three million times), not Ivison or his decisions, which are his own business. Whether, or how much, a PWD seeks out treatments or cures is highly variable and can depend on many factors, including the type and severity of the disability, the person’s resources for accessing treatment, the age of the PWD, the likelihood of success, and many other issues. It is always the individuals’ right to seek their own path and to speak for themselves (or to choose not to speak) about why they have chosen it.

Now, on to the second reason why I hated receiving links to this video over and over. The first reason is that it brought up grief and a real sense of isolation from people who I thought knew and understood me.

The second reason is more straightforward: The video in itself is a smorgasbord of ableist media tropes. It’s a manipulative schlockfest that manages to combine the posterchild, supercrip, cure, charity, and Tiny Tim tropes, all in five minutes!

Since the first word of the title is “Inspirational,” it’s no surprise that the video pulls out all the stops to tug at the heartstrings using all the old standbys — the sappy music, the adorable puppy, the kid with a disability reaching for a cure with the help of various charities, etc. In fact, the blurb under the video on youtube starts with “Kleenex Alert!!”

Given all this, I find it hard to believe what the videomaker told me when I asked her if there was a transcript of the video available.

She said no, because she had just made the video for a few friends. It totally surprised her that it went viral!

Really? She owns a dog whose job it is to raise money through publicity events, and she created a video (with music, titles, news clips, etc.) about that dog, and she titled it, “Inspirational Video,” and included all sorts of web links — just for her friends to enjoy?

The biggest problem is how the video handles its main human subject — Patrick Ivison. First of all, we’re introduced to Ivison as one of Ricki’s “charitable causes,” which strips away a certain amount of his personhood: “Her first fundraiser is for a 15 year old quadriplegic surfer, Patrick Ivison.”

Also note that his disability status comes before his name (although at least his occupation — “surfer” — and age are given equal weight). Ivison, who could have been featured as a promising young athlete, is instead an object of charity and spectacle — and unlike Ricochet, who at least has her (speculated upon) desires and feelings taken into account, we learn nothing of what Ivison actually wants.

We can infer — and I certainly hope — that his interest in walking again is the reason that the money was raised for “Helping Patrick Walk” as opposed to providing him with products or services that would improve his life in the here and now. We can only infer that the organization somehow learned of his desire to try this experimental, out-of-pocket physical therapy which costs $100 per hour and approached him. Not that he approached this organization for a service dog and they offered, instead (or in addition) for him to try to walk.

Regardless of what was going on for Ivison, the fact that Ricki’s handler chose “helping a paralyzed person walk” as her first fundraiser is nauseatingly typical of what is seen as a worthy disability “cause.” The public seems to be the most interested in providing financial assistance to PWDs if it’s to try to make them into nondisabled people, especially the holy grail of posterchild fundraising — for a wheelchair user to walk again. (And after the video went viral, several thousand more dollars were raised.)

How about having Ricki surf to raise taxes and awareness to pay for safe and accessible housing for low-income people with disabilities? Or to allow the Justice Department to sue the millions of public venues or providers that are not in compliance with the Americans with Disabilities Act? Or for food, assistive equipment, health insurance, and improvements to disability benefits programs, which would provide a better quality of life for all disabled people? Not so popular as a glimpse of a blond surfer dude taking a few steps while flashbulbs pop, apparently.

I can’t believe I didn’t actually see this coming as the culmination of the Kleenex alert. Because the narrator is someone who works with PWDs, and because she uses person-first language about PWDs in her narration, I had actually hoped that Ricki was raising money for something that would increase Ivison’s autonomy, joy, or independence in the here and now — something that was not focused entirely on his disability but on him as a whole person. I had thought (silly me), that it might have to do with his surfing — like a new surfboard or wet suit or surfing camp (if such a thing exists) or something. Maybe, as I mentioned before, that Ricki and he find they were a great match as a SD team, in the water and out. But no.

Another familiar problem is that Ivison is never quoted, never speaks for himself in any way (except insofar as his surfing shows us his surfing talents), but is talked about by the (apparently) nondisabled dog trainer. He is part of the spectacle of Ricki’s flashy fundraising and “human interest story” on numerous TV news programs. There’s no way to know from the video if he was interviewed and got to speak for himself on any of those segments; if he did, there was no sign of it in the video.

I guess I also should have paid more attention to the background music, as the song repeatedly refers to “standing tall” and “learning to walk. . . .”

The fundraising “allows amazing things to happen!”

Cue images of Ivison’s PT, which is unlike any therapy session I’ve ever seen before. Dozens of people line either side of the carpet on which Ivison and his therapist labor. Cordoned off by maroon velvet ropes like those for a red-carpet affair, onlookers cheer, clap, and take pictures while Ivison concentrates and sweats.

Ivison is obviously working his ass off — and props to him, I hope his therapy is successful and brings him joy — but I wonder how he felt about his PT being a media circus? If he could have gotten the money for PT without having to be a star attraction, would have chosen that?

Regardless — again, judging this just as a piece of disability representation — the world certainly needs no more encouragement to stare and gawk at PWDs, to take our picture for something that nondisabled people take for granted (PT), and to make our everyday lives into inspirational media events for nondisabled people to weep over, as they pity/adulate us.

Please, Think Before You Link

I’ve run out of time, and you’ve probably run out of patience.

I’d like to make two requests. One is that when you see something about assistance dogs, consider the context and the difference between what an owner-trainer, like me, goes through, versus what a nondisabled trainer who is working for a program experiences. They are not relying on the dogs they are training to be their assistants! It is hard enough to be a SD partner and then lose the support and assistance of your dog. To lack that support while using every bit of time and energy you have on training a dog you hope will one day return the investment is even harder. The losses surrounding a partner-trained dog washing out are massive; there is nothing comparable for a nondisabled trainer.

An essential element to the disparity is also that programs are businesses. They get money through fundraising, and many of them charge disabled clients for their dogs, as well. The trainers are getting paid for their work. In most cases, the trainer is not personally investing all their own time and money and energy into one dog — they go to work, work with several dogs, and go home. In most programs, although this is not the case with the handler/trainer in the video, puppy raisers are used, so the trainers don’t even have to work with puppies who are having toileting accidents, chewing up the house, and other difficult puppy behaviors. They receive a dog who has good manners, basic obedience, and has been well socialized. Then they evaluate if the dog seems suitable for further training before proceeding. This culling process allows them to work with the cream of the crop, avoiding the messiness of the puppy years.

When someone sends me this video, it slams a door on whatever connection or understanding I thought we had. I realize they comprehend almost nothing of what I’m going through in dedicating my life for at least two years to raising and training my SDiT, to the exclusion of almost everything else. Most people seem to think training my own SD is a fun little hobby — a way to keep me occupied with dogs, because I’m a dog lover. Even my family didn’t “get” how essential my SDs were to me until — ten years after I’d trained my first SD — my mother spent a week with me when I was extremely ill and saw the number of things my (second) SD made possible for me, all day long, every day.

The second request is that the next time you read an article or see something on TV or in the movies or on the web about a person with a disability, ask yourself if they are being portrayed and treated like any other person — like a nondisabled person? Does the storyline (whether fiction or nonfiction) follow one of the common ableist tropes I outlined above? If so, please don’t forward it on to all your friends with a note about how moving it is and how it made you cry. Instead, write to the creator of the piece and ask them to go to the BADD 2011 page and educate themselves about disability oppression.

Thank you for reading this very long post!

– Sharon, the muse of Gadget, the spirit of Jersey, and Barnum (SDiT? and Bird-Watcher!)