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

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!)

Join the Carnival and Blogswarm!

Lots of exciting stuff in the blogosphere in the coming week!

The third Assistance Dog Blog Carnival goes up in a few days, but if you want to submit a post and haven’t done so yet, you still have time! Get in touch with our host for this edition, The Trouble Is. . . , and ask about an extension, if you need one.

Want to know more about the ADBC? For the low-down on the carnival, in general, click on the “About the ADBC” link on my menu to the right. For info on April’s edition, read all the details here.

And that’s not all!

Every year, on May 1, there is a fabulous blogswarm called BADD: Blogging Against Disablism Day. It’s hosted by Diary of a Goldfish, where you can get all the details.

From the roster of excellent bloggers who are planning to get involved, 2011 looks to be bigger, better, and BADDer than ever!

Please help spread the word! Info on how to get involved, hashtags for twitter, and all that good stuff is up at Diary of a Goldfish.

Happy bloggifying!

– Sharon and the muse of Gadget

BADD: Q&A on Being an Assistance Dog Partner

Blogging Against Disablism Day“>

Today, May 1, is international Blogging Against Disableism Day. So, this blog will be a bit of a departure from the usual. Actually, since I’ve barely been blogging since Barnum arrived, any blog is a departure these days! But I’m very motivated to get this one out because I’ve been looking forward to participating in BADD.

(By the way, Barnum is doing really well! I love him to bits. I keep wanting to blog about this or that exciting or adorable or heartbreaking thing, so I have many partial posts. They won’t be in chronological order, but I’ll get them up eventually!)

In case you are wondering, “disableism” is the term used in most countries outside the US for what we, in the US, call “ableism.” [The preceding link has a nice, succinct definition of ableism, but you can find many others that go into more depth.] If you don’t know what either of these words mean, here is your chance to learn!

When I was writing up my FAQ, there were a lot of comments and questions I wasn’t sure if I should include or not, but they are perfect for BADD, so here they are. (Additional comments and questions, not as closely related to ableism can be found on the FAQCC page.) Some of the questions below are direct quotes, but most are either paraphrases or compilations of the same type of question or comment I’ve heard many times. Because Internet communication and face-to-face communication tend to be different, some are comments I read online (community forums, Facebook, here at After Gadget), others are questions I’m asked “in real life,” and many are a combination.

Warning: It’s pretty hard to address some of these issues without sounding a bit snarky. (Or way snarky.) But I’ve noticed that most blogs err on the side of snark, so hopefully you’re used to it. Nevertheless, this post is aimed at informing those who need informing, amusing and affirming my comrades, and yes, allowing me to blow off some steam on a few pet (pun! — see below) peeves. If  you’ve said some version of the things I don’t like, it doesn’t mean I don’t love and appreciate you. After all, Gadget wouldn’t have cared, and he was an excellent judge of character. It just means, we’re all learning.

Frequent Questions and Comments on Being an Assistance Dog (AD) Partner

General Questions and Comments

Q: Who trained your service dog (SD)?

A: I did. Yes, me, a disabled person! I train my own dogs!

Q: That was sarcastic and overly emphatic. How come?

A: I get asked this question a lot, and it gets tiresome, especially because usually the question is put to me this way: “Who gave you your service dog?” or “Where did you get her/him from?” or “Who trained him for you?” or “Isn’t it wonderful that they [assistance-dog programs] do this?”

These questions assume that because I’m disabled, I must be the recipient of charity. (And by the way, most AD programs charge for their dogs — many thousand dollars). I particularly find it irksome when someone asks who trained my dog after I have already said that I train my own service dogs. (Yes, it happens often.)

To sum up: The frequency of this question, the patronizing tone which sometimes accompanies it, the astonishment with which my answer is usually greeted, and the fact that people ask it after I have already told them I am my own dog trainer is insulting. It suggests that many nondisabled people have trouble wrapping their minds around the idea that a person with a disability (PWD), or maybe especially a person with multiple disabilities, is capable of training her own assistance dog.

The corollary is that sometimes, when I am interacting with someone online who therefore cannot see my disabilities, I will say I am a PWD raising a puppy to be my service dog, and they gush in response how noble and big-hearted I am to do this work. In this case, the nondisabled person has had to ignore the fact that I said I was disabled and that this will be my service dog in order to fit the idea of me being a nondisabled “puppy raiser” into their world view. When I correct their assumption, suddenly my dog-training efforts are no longer so laudatory.

Both these types of comments and questions are forms of dis/ableism. Again, I encourage you to please learn the definition of ableism. Reading blogs about disability rights issues can also help; there are some great ones on my blogroll.

Q: Isn’t there a non-offensive version of that question?

A: Yes, there is. Sometimes people ask in a neutral way, “May I ask who trained your dog?” or “Did you train him or get him from a program?” or something along those lines. If their response, on hearing that I trained him is not incredulous gushing, but treated as just another interesting piece of information, that is very nice. Sometimes people say something like, “You must be a good trainer, he’s great!” Of course, flattery will get you everywhere.

Actually, some people ask this because they have a disability (often a hidden one) or because someone in their lives has a disability, and they are wondering if an assistance dog might help them. I am very eager to give them information, including a leaflet with the contact information for an assistance-dog advocacy organization of which I’m a member. I often give them my own name and email address and encourage them to contact me.

Likewise, if the person is another dog-training fanatic, it can be fun to “talk shop.” I do like to meet up with other assistance dog partners when out and about because I’m pretty starved for “real-life” assistance-dog friends, but I understand that not everyone wants to get into an AD conversation every time they leave their house. (See below.)

Q: What kind of dog is that? Can I pet him? [Pet, pet, whistle, clap, shout, wave, offer treat.] Can I give him this biscuit? What’s his name? Where’d you get him? What does he do for you? Can I monopolize all your time and energy and breathing space to talk to you about your dog?

A:

Long answer: Do you see that I am using oxygen and a mask covering my nose and mouth? And that I am falling out of my chair with exhaustion? Did you know that once I get home, my PCA will have to help me bathe, change my clothes, wash my AD, and my powerchair because of all the chemical fumes that sink into hair and skin and fabric? Did you know that if you pet my AD, not only are you distracting him from his job, but you are also getting even more chemicals on him that we will have to shampoo off?

Short answer: I’m trying to buy something. Here’s a leaflet.

Non-Snarky addendum: I know that many AD partners like to interact with the public about their ADs. Sometimes I do, too. It depends on the situation (how sick I am, what the environment is, the tone of the interaction, etc.). It’s true that for many PWDs, partnering with an AD helps break down isolation, and that has been true for me, too.

I also think it makes a difference what questions you get asked and how often. For example, many AD partners find it particularly intrusive and offensive to be asked what their AD does, since this is often akin to asking details about their disability or daily living needs. If I’m already in a conversation with someone about my AD, and I think their question has a valid basis, and isn’t just nosiness, I might be okay with it. I also usually give examples of the most obvious and least personal tasks. However, bear in mind that asking, “What does your dog do for you?” could be like asking a stranger, “Do you have trouble getting up when you fall? Do you take medication that you need help to remember? Do you have a panic disorder that your dog assists you with?”

Another issue is since my SDs have been Bouviers des Flandres (usually with short haircuts I do myself), I am constantly asked, “What kind of dog is that?” When I answer, most people say they’ve never heard of them. I actually made a brochure called, “What Kind of Dog Is That?” after I partnered with my first Bouv, Jersey, just so I didn’t have to get stuck in long explanations about what a Bouvier is.

The moral of the story is that everyone is unique, and some people love to discuss their ADs, some people don’t, and everybody has good days and bad days, hurried days and mellow days. Also, bear in mind that almost all of us get asked questions or hear comments whenever we’re in public. So, if you want to approach a stranger about their working dog, try to limit your questions, and be prepared to gracefully take “no” for an answer. I recommend approaching with something like, “Do you have a moment to answer a question about your assistance dog?” That way, you acknowledge that the PWD has a life that is not devoted to being a spokesperson, and you’re giving them an “out” if they don’t want to talk. If you have a specific reason behind your question, I would open with that, which indicates that you don’t intend to take up all their time.

Questions and Comments Arising from Gadget’s Death and/or this Blog

Q: I am so sorry about the loss of your pet. I know just what you’re going through because I lost my pet dog, too, and I loved him so much.

A: Thank you for your sympathies. I’m sorry about the loss of your dog, as well. I have lost much-beloved pets, too, and it is very painful. The grief can last a long time and is sometimes devastating. In fact, it is often a worse loss than that of a human loved one because our relationship with our animals is usually entirely positive, without any of the anger, guilt, resentment, or other complications of human relationships.

However, Gadget was not a pet. He was my service dog.

I strongly disliked having Gadget referred to as my pet when he was alive, and because my loss has been so public, I find that since his death, I’ve heard him referred to as my pet (or my “companion” or “friend,” which are often other terms people use for pets) much more than I did when he was alive. It can be a little hard to take, hearing it so often.

While the “heart loss” of an assistance dog may share similarities with the loss of a super-bonded pet relationship, the working-assistant partnership and functionality loss are very different. The grief of pet loss is very real, but  it’s a different kind of loss in several respects. I can’t speak for all assistance-dog partners, but those I have talked to about this issue feel as I do: We hate having our partners called pets, and we hate it when non-AD partners say they know just how we feel.

Q: Why? How is the loss of an assistance dog different?

A: I haven’t come up with a short, simple answer to that yet, but I’m hoping that the accumulated posts here, over time, will be an answer to that question. Gadget’s death is the worst loss I’ve lived through, and that includes the death of one my best friends a year ago and multiple other forms of major loss.

To put this into perspective: The first three years I was disabled by chronic illness, I almost never left the house, and I often went many weeks at a time without seeing another human being. I lost my job and career, friends, much of my financial security, freedom, independence, social life, and on and on. And I also just felt physically very lousy all the time. I had two cats at that time, and they were my one source of physical contact, daily interaction, and love. When each of them died, it was very, very hard. I used to say, and I still believe, they kept me sane those first few years.

Yet, Gadget’s death feels 50 times worse. Sometimes people react to my disabilities as tragedies. I don’t feel they are tragedies; I feel Gadget’s death was a tragedy. I have never dreaded anything so much as I dreaded him dying. I honestly don’t know if I’ll ever completely get over it.

Q: I was trying to be supportive. What should I say instead?

A: I know you were, and I appreciate your kind intention. While I know you are trying to empathize by saying you have gone through the same thing, many of us feel more alone when we hear such comments, because we feel the person trying to comfort us not only doesn’t understand what we’re going through, but by saying that they do, we are cut off from saying how we really feel. I know I usually say, “Thank you,” to conform to social niceties and to spare a well-intentioned person’s feelings; then I try to avoid the topic with them after that. That feels lonely, too.

I hope you will make use of this information the next time you come into contact with someone who has lost an assistance dog. As to what words to use instead, more appropriate terms would be “partner,” “assistance dog,” or “service dog,” “guide dog,” or “hearing dog.” If you don’t want to use these terms, you can just say the animal’s name: “I’m so sorry you lost [dog’s name]. You must miss him/her terribly. Let me know what you need. I’m here for you.” That’s usually what I want to hear, and I find it hard to imagine another grieving AD partner would be put off by any of the above. In fact, I think those are good things to say regarding any kind of bereavement.

I also am fine with people — in comments here at After Gadget or in “real life” — telling me about their own feelings of sadness and loss when their dogs died, whether or not they were pets or ADs. It’s always okay to talk about your own feelings, your own experiences, and I can often tell from people’s tone how heartfelt their sympathies are. I have been moved by many of the comments here from those who have lost companion animals saying that my blog has touched them and reminded them of their own dogs. It is only when people start making comparisons, insisting that they know how I feel, or using “the p-word,” that I feel alienated.

(Other assistance dog partners: If you agree, disagree, have other ideas, etc., please comment!)

Q: Is it okay to post this link on my blog/website/Facebook/email to friends? I would have to list it under “pet loss resources” and you just said not to refer to him as a “pet”!

A: That’s okay. Really and truly. Please do spread the word. The more people who learn about and love Gadget, the better. I feel that Gadget’s death left a hole in the world, and I want more people to know how wonderful he was, and how much he is missed.

While AD partners often try to seek each other out for comfort and support when dealing with a loss, sometimes we don’t know others, or we are not that connected to the AD community, or we face communication or other access barriers. In fact, I turned to a variety of “pet loss” groups and hotlines. Some worked out better for me than others, but these things are very individual. A listserv of people who lost their dogs to cancer has been very important to me, and I’m the only AD partner in the group; however, I relate very strongly to most of what happens on the list and care deeply about the other people and dogs. Having a relationship with these people before our dogs died makes a big difference.

In fact, my impression is that most readers of After Gadget were not AD partners, but many have lost pet dogs; there is a lot about grief and loss that is universal, no matter the species or relationship. I am hoping that After Gadget will, in time, be just one of many easily accessed resources for grieving assistance dog partners — blogs, chats, lists, hotlines, etc. Meanwhile, we have to find each other somewhere, and pet loss resources are often where we try. I would appreciate it, though, if you indicated that Gadget was a service dog along with your link.

Comments and Questions Arising from Seeking and Raising My New Puppy, Barnum

Q: Do you have a replacement lined up?

A: In the AD community, we do not use the term “replacement.” Gadget could never be replaced. He was one-of-a-kind. It would be like saying, after your spouse died, “Are you going to marry a replacement?” We prefer the term “successor.”

Most also prefer the term “partner,” not “owner,” because an assistance-dog partnership is a team effort. Both members of the team take care of and support each other and work together toward their goals.

Likewise, a previous AD is “retired” or the “predecessor,” and contrary to popular belief, not all retired ADs are rehomed (or euthanized!). Some ADs stay with their former partner as back-up SDs, pets, therapy dogs, etc.

Q:

1. Who will raise your puppy for you?

A: 1. I will be raising the puppy.

2. Would you like me, a complete stranger, to do it?

2. No, I wouldn’t. Assuming I need someone else — someone nondisabled or less disabled than me — to raise my future SD is ableist, especially if you have learned anything about me and know that I have trained two previous SDs and also have helped other people (mostly nondisabled people!) train their dogs. Please read more on learning about ableism.

3. Would you like me to give you a random puppy, probably of a breed you are allergic to, from my neighbor who has done no health testing on the parents and has no experience in selecting dogs with the right temperament to do the type of assistance work you’re seeking?

3. No, I really, really wouldn’t. I spent years, literally, researching which breeder I wanted to get my puppy from this time around. There are not many Bouvier breeders in the US, yet I still had to do my homework. The breeder I chose knows the complete lineage of Barnum’s parents (which includes their personalities, health histories, and temperaments) and provides information on every health test she has run on them and their forebears. She is also one of a minuscule number of Bouvier breeders that have bred and selected service dogs.

Q: If you start with a puppy, won’t it take an awfully long time before the dog can assist you?

A: Yes, it will, and that will be the hardest part: expending so much energy while getting no help in return for a long while at the beginning. My original plan had been to do something similar to what I did when training Gadget: I adopted Gadget when Jersey was still working, and she helped me train him, and then she retired as my pet when Gadget was ready to take over working. For Gadget’s successor, I’d decided to get a puppy when Gadget was about seven or eight year’s old; that way I would have had Gadget’s assistance with training the puppy, as well as not having a gap with no canine assistant. However, two major things went wrong. One was that I became severely ill with Lyme and two other tick-borne diseases and had to focus on survival; therefore, I was in no shape to raise and train a puppy. Second, right around the time my health was improving, Gadget got cancer, so my focus had to be on his needs, above all else.

However, the waiting and trade-off was hard when I was training adult dogs, too. It seems to be par-for-the-course whenever one adjusts to a new assistance dog or when one is working toward finishing training. (I have heard from those with program dogs that even in that case, when starting a new partnership, it takes both team members time to acclimate to new routines, environments, and styles.)

However, this time, for the first time, I have several people, including my partner, who are helping me raise Barnum. Without them, I definitely could not handle a baby. In the past, I did all of the care and training myself (except for Gadget’s wonderful dog walkers, Deb and Cameron, whom he loved with all his heart, as do I).

And yes, I know I said above that the assumption that I couldn’t raise a puppy on my own was ableist, and now I’ve gone and verified that I couldn’t raise a puppy on my own, so let me elucidate: It is the assumption that is the problem. Types and severities of disability range greatly. I’m much more severely disabled now than I was a few years ago. Also, there is often an assumption (that word keeps cropping up!) that disabled people lead solitary lives, without friends, lovers, spouses, etc. Barnum is being actively raised by my partner, me, and my four PCAs — under my instruction — with additional support that I have rallied from my small, rural community.

I know several people with disabilities who raised their ADs from puppyhood who considered it a delight and wouldn’t have had it any other way. I know others who absolutely feel their lifestyle could not accommodate a puppy and have adopted adolescent or adult dogs or who have obtained program dogs. There are also people who did raise a puppy into an AD but who have decided that next time around they will take a different route. You might notice that the same can be said for nondisabled people: some prefer pups, some older dogs, etc. In fact, if you learn nothing else from this post, I hope this one fact will come shining through: all people with disabilities are unique, just like all nondisabled people are unique! In this way, we are all exactly the same! (Ooh, a paradox.)

Q: Oh my goodness! How will you manage without a service dog until the puppy is full-grown and trained? Can’t I help you get a trained service dog right now? I barely know you, but I am so worried about you!

A: I very much appreciate that you understand that service dogs are not pets, and that my independence, safety, freedom, and quality of life are inextricably connected to my partnerships with my service dog. When people “get” that this loss is not the loss of a pet, that can feel very supportive.

However, treating my disability as a catastrophe and my life as a tragedy does not feel supportive. It suggests that you think I have had service dogs from the moment I became disabled, for example, which isn’t true for me or any assistance dog partner I know. It also indicates an assumption that I lack the resources to survive without a service dog, which is also not true of me or any other AD partner I know. (Hopefully you’ve already figured out that this type of response is yet another form of ableism.)

Those who choose to partner with ADs may experience better, richer, more independent, or safer lives with our canine assistants, but that doesn’t mean we will keel over and die without them. Often, to explain the role of our dogs, AD partners liken an AD to a piece of assistive equipment, such as a wheelchair, a cane, or an environmental control unit: we can survive without them, but life is much better with them. In fact, when an AD dies or retires, many of us turn to the assistive technologies we used to use before we were working with an AD. (I’ve discussed this in some of my previous posts, especially this one about the doorbell.) We might experience these technologies as inferior to a partnership with a versatile, thinking teammate, but they are extremely valuable.

Two other ways of coping with functional issues after the loss of an AD are increased human assistance, and — for lack of a better term — “making do.” I do need human assistants to get along, but my life is best with both a canine assistant and human assistants. For others I know, having an assistance dog allows them to live without PCAs or other human assistants (such as sighted guides). If they lose their AD, they may turn to human assistants until they have a reliable AD again. In my case, having more personal assistance for myself than I had when training my previous dogs will make me better able to raise Barnum. I’ve also enlisted the help of members of my household to pitch in with things like taking Barnum out to pee or playing with him, when I’m too tired or in too much pain. Betsy took him to puppy kindergarten because the class was not MCS-accessible. Having more people involved helps take the pressure off the pup and me, allowing us all to enjoy his puppyhood and training more fully.

Q: But why buy from a breeder? Why not adopt a rescue? Don’t you feel guilty that you’re contributing to dog overpopulation? Don’t assistance-dog programs contribute to the overpopulation and death of dogs?

A: This is a complicated situation, and I have wrestled with guilt over the decision to buy from a breeder. My previous dogs have all been older — two rescues and one “rehome.” However, my reasons for wanting a puppy this time around are solid, relating to my own health needs, my service dog goals, and what I think will be best for the dog. It’s just not the right time for me to have a rescue. I considered it, and I decided it wouldn’t be fair to the dog nor to me and my household. I’m hoping that eventually I’ll be doing well enough to foster and help train rescue dogs for others.

Another major issue in terms of adopting rescues is that I am allergic to most dogs, so I can’t adopt or foster a mixed breed (which eliminates 75 percent of shelter dogs) or any breed that is not hypoallergenic. This doesn’t mean it’s impossible for me to adopt a rescue — I’ve done it before, through Bouvier rescue — but it makes it more complicated.

If I didn’t have allergies, I would likely have adopted a mixed breed from the shelter for my first service dog, as they tend to be genetically hardier and healthier (because there is less inbreeding than with purebred dogs), and are usually very smart, to boot. But it’s very rare to find a hypoallergenic mixed breed. Plus, now I’m an incurable Bouvier fancier.

As to the issue of breeding programs at assistance-dog schools, this is complex. For one thing, many programs do adopt and train dogs from shelters, rescue, or donated from breeders. For another, the life of an assistance dog is not for everyone. If a program has a high success rate of graduating dogs with the physical, mental, and emotional traits that make assistance work rewarding, safe, and successful for them, and if they are humane and responsible in their breeding, training, and placement, that is probably the best way to go for them.

In my opinion, the crime of dog overpopulation (and thus, death) is caused primarily by puppy mills, which are too horrible for me to discuss here, and secondarily by people who breed their pet dogs without awareness of the larger consequences.

Q: Why don’t you get a service dog who is already trained? Wouldn’t it be easier?

A: Yes and no. It’s complicated. I’ve posted the long version of the story in my “About Sharon’s Dogs” page. For this BADD post, however, I do want to briefly make three points that do relate to ableism (and which I discuss more fully and less pedantically on the other page):

1. I tried to get a service dog through a program, and I couldn’t. This was for two reasons. The first is that no program could or would train a dog to fit my disability needs, because my disabilities were not “mainstream” enough. Fortunately, the AD world has changed a lot since 1998, and many more types of disabilities are now seen as appropriate for service dog work. The second is that no program would accommodate my disability needs, which is extremely problematic for organizations that are designed to meet the needs of PWDs! This is changing, too, though not as much as I’d like.

2. I discovered, in the process of searching for and applying for programs, that there was an air of paternalism among many programs that really turned me off. A big component of the disability rights movement is self-empowerment — that we (PWDs) know our lives, bodies, and needs best. Sometimes this means that the people who are in the “helping professions” (doctors, social workers, those who work for public or private charities or benefits programs, etc.), treat us with less respect, understanding, or autonomy than we think is appropriate or healthy. While many assistance-dog programs work terrifically well for many people, a lot depends on the organization, the PWD, and the fit between them. I did not find a good fit in this regard; however, as I mentioned above, a lot has changed. Many new AD programs have sprung up that have a more “client-driven” focus, including programs run by PWDs or that teach PWDs to train their own ADs. I also think some of the “old guard” has changed somewhat to keep up with the times.

3. Once I discovered that I was good at and enjoyed assistance-dog training, I got hooked. There are challenges, but for me, the benefits of partner-training outweigh the costs. If someone tried to train my dog for me, I would feel robbed of an essential part of our partnership and of my life experience, as well as of the flexibility I enjoy to train or retrain to fit exactly according to my (often changing) disability needs and my lifestyle.

Q: You mentioned a struggle you’re having with raising your puppy. The problem is that you’re doing [fill in the blank], while you really should [fill in the blank thing that is either inappropriate or impossible for you to do].

A.

1. [Silence.]

2. Everyone loves to give advice about raising puppies, training dogs, raising children, etc., to people who are newly in the thick of it, disability or not. I have been guilty of this, myself. Unfortunately, usually unsolicited advice is obnoxious (again, disability or no).

However, there are some broader issues to keep in mind. One is that PWDs have historically received — and continue to, as much or more than ever — unsolicited advice from nondisabled people about our disabilities. The underlying assumption is that since we’re disabled, and they’re not, we must be doing something wrong, so nondisabled folks, who must be doing something right, can fill us in.

This urge is so widespread and obnoxious that when I was cartooning about life with disability, my most popular cartoon, bar none, was one that was a “fill-in-the-blank” card to people offering “helpful suggestions” about how we could cure ourselves. PWDs from all over the world and with every type of disability related to that cartoon. Before you give any advice to a PWD on any topic, think long and hard about whether this is something we might already have more information and perspective on than you do because we live with the disability, ourselves. Also, think about whether they have indicated in any way that they want your advice.

I’ve received many suggestions and pieces of advice since I got Barnum, and a few of them were useful (such as book recommendations), and many were not. The ones that stuck in my craw tended to be from people without disabilities or with different disabilities than me who were judgmental or ignorant around my disabilities.

For example, I was very stressed about how to get Barnum from his crate and out the door in the first few weeks of toilet training without either (a) allowing him time to have an accident or (b) running him over in my powerchair. I had tremendous anxiety about hurting a puppy with my powerchair. I literally had nightmares about it before he arrived. I was so afraid I would accidentally murder him in a horrific way by running him over in my chair that it was a factor in my decision as to whether to get a puppy or not.

My friends reassured me that I would not accidentally kill the puppy. Then Barnum arrived, and it turned out to be quite tricky. The easiest way, for others in the household, was to pick him up and jog to the door and deposit him outside. This did not work easily for me.

For one thing, for the first two weeks, he reeked so bad of the fragranced shampoo the breeder had washed him with (despite our washing him, ourselves, several times), that I couldn’t touch him or pick him up without having a reaction. If I held him, any clothes that touched him had to go into the wash. This added an additional layer of work and exhaustion — not to mention misery at not being able to touch and bond with my puppy without becoming ill — to an already difficult situation. Since I had to take him out every hour, I couldn’t pick him up and then change my clothes every hour!

There were also the issues of fatigue, balance, dizziness, weakness, etc., that affected being able to pick him up and whisk him to the door in my lap. Hefting ten pounds (and growing every day!) of wriggling puppy was not nothing for me. There’s also the fact that opening and shutting of doors can be tricky from a chair, and with a squirming puppy whose bladder can only last 30 seconds or less, the situation isn’t any easier.

It seemed to me that the best solution was to get a leash on him and then have him run behind me out the door. That way, I would know where he was (because of where the leash was), and I wouldn’t have to deal with the lap-related issues. Despite my extreme watchfulness, however, I did twice run over his paw, which was a terrifying experience for both of us, but which caused neither of us any lasting harm.

However, when I sought advice on handling the leash situation with a puppy who was still not used to wearing a collar, several people told me that I should just carry him! What the heck was wrong with me that I was trying to get a puppy to heel on command at nine weeks? (Of course, I didn’t care about heeling; I cared about not squishing him.) Someone even told me that I should not move my chair, ever, at any time, without first always making sure that he was nowhere near me. Well then, how should I get him to the door? Telekinesis?

Several people were quite blaming that I had run over his paw at all. Honestly, I don’t know any wheelchair user who has never run over their dog’s paw! I have run over several people’s feet, including my own! Certainly there must exist many wheelchair users who are much more graceful than I, who have better coordination, better memory and spatial abilities, more accessible homes, and no balance issues. Not all of us are born athletes! In fact, Betsy accidentally stepped on Barnum’s paw on a walk and felt just as horrible as I had when I’d run over his paw. Then I found in one of my puppy books, under life stages, “Learns to avoid being stepped on”! That made us both feel better.

So, this is my final point: All the people who gave me a hard time and/or told me how I should have handled getting Barnum from the crate to the door knew that I have a disability and that I’m a wheelchair user. Some did not know about the MCS, and at any rate, in my experience, only people in the severe MCS community actually understand severe MCS, no matter how much others may think they do. Still, is it really such a stretch to imagine that someone who uses a powerchair to get around in her house might have disabilities that would make it challenging or impossible to lean over, pickup a wriggling, increasingly heavy puppy, carry it through at least two doorways and to the outdoors, in winter, all in under thirty seconds? Might it have occurred to the people to whom I said, “I need to have him on a leash so I know where he is so I don’t run over him,” that I had good reasons for choosing that method? Did they think that having a disability made me unaware that I also am the proud owner of a lap?

Of course not. I’m sure they didn’t think of these issues at all. That’s the point: assumptions, again. Assumptions about what a PWD can or can’t do, and assumptions that the way a PWD chooses are not based in rational awareness of her own body and/or abilities and/or limitations. I have to say that, unlike most assistance-dog partners I know, I have very rarely been denied access to public facilities. Having an assistance dog has not kept me from passing through most doors. Yet, I still find that I frequently must ask people, when it comes to me and my service dogs, to check your assumptions at the door.

P.S. It’s a year later, and I read this terrific post, Service Dog Etiquette for Dog Lovers, at The Manor of Mixed Blessings, and I thought it was terrific. Please read it; if you are not an assistance-dog partner, I guarantee you will learn something. She also wrote this follow-up piece for people who were bothered by her shoe analogy, which I actually loved and commented upon.