Posts Tagged 'diability access'

BADD: Q&A on Being an Assistance Dog Partner

Blogging Against Disablism Day“>The graphic for BADD, a multicolored square comprised of twenty other squares of stick figures, mostly standing, some wheelchair symbols or with canes

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.

Interlude: Gadget Wins Posthumous Recognition

Hey everyone.

Sorry for the lag between posts. I’ve been focused on the following:

1. Learning how to make After Gadget more accessible and then going back to revise all previous pages and posts to get them up to scratch. (Almost, but not quite done. I should be done when the next “real” blog goes up.)

By the way, if you blog, too, you can get great info on making your blog accessible at FWD/Forward — feminists with disabilities. It’s also a really excellent blog.

P.S. Even if you have not received a complaint about your blog’s inaccessibility, please do not assume it works for everyone. For example, I haven’t had any complaints about After Gadget, but I’ve learned some ways to improve it.

Personally, I flee many a website or blog because it’s not accessible to me, without ever telling the webmaster or blogger that there are problems. Aside from it being a pain in the butt to constantly fight for access, it’s not alway even possible if you can’t access the site to begin with. Stepping off my (fragrance-free) soap box now.

2. Sleeping. You know, it turns out that sleep really can be excellent. I don’t think I’ll make it into a lifestyle or anything, but now and again, it’s very refreshing. I recommend it.

3. Puppy preparations!

A. Which puppy?

The breeder has narrowed it down to two boys as the best candidates for what I’m seeking in a future SD. (The latest puppy photos are at legacybouviers.com, an inaccessible site. Click on “New Arrivals.”) They sound unbelievably adorable and sweet. They both love to be held, and you can pick them up and rub their bellies and paws, and they just go limp! Isn’t that the best? And, although they like to play, they are good at settling down and are super mellow, which I need, because when we are aren’t training or working or exercising, we will be resting a lot. They also are curious and bold, but not overly obnoxious. Of course, it’s still too soon to tell. The final decision won’t be made until formal temperament testing is done between weeks seven and eight.

B. How to get the puppy here?

I’ve been working on getting Monsieur le Petit Chien here. I’ve decided to book flights for Betsy to fly in, pick up the puppy, and fly back. I have not booked a flight in fifteen years, if that, and never before booked a pup as “carry on,” so I’m a bit nervous about making it work out. Anyone with experience in this, feel free to post suggestions or soothing remarks and encouragements.

C. When should I take leave of my senses, before or after the puppy gets here?

Most people probably think that getting a puppy in the first place requires taking leave of your senses to a certain degree. I’m not going to argue.

In my case, there are also predictable occasions (and some unpredictable ones) when I have what I affectionately call, “the crazies.” This usually happens when I start a new antiparasitic or antibiotic medication to attack one or more of the tick-borne diseases (TBDs) that have damaged my brain. It’s part of what’s known as a “herx” or a Herxheimer reaction. Herxes can last for days or months. When I was adding new treatments every few months, I essentially herxed for over two years. That was brutal, but I’ve learned a lot from it.

One thing I’ve learned is that it’s better to be honest with myself and others about what’s going on. This helps me handle it better; it helps the people around me handle it better; and it allows my doctors and me to make better decisions about my health care. It also makes me less secretive and ashamed of it, which contributes to all of the above, as well as, in my opinion, making the world a better place (and delusions of grandeur are not even one of my symptoms; I come by them naturally). That’s why I’m taking you on this tangent: one of my roles in life, and in this blog, is to destigmatize and demystify stuff about disability so that disabled folks will have to put up with less oppression. For example, I am certain I’m not the only one taking steps to address psych issues before I get a puppy.

Case in point: I don’t want to be in the middle of a new, big, flaming psych herx when I welcome my puppy into the first home he will ever know after leaving the nest!

So when I talked to my doctor yesterday about which protocol we’re switching to, I had the pup in mind. My doc and I agreed that it’s time to attack my Bartonella infection because it’s been undertreated, and it’s caused me loads of problems. She suggested adding a new IV medication. While all my TBDs can cause psych symptoms, the worst are probably related to Bartonella.

“Would this be likely to kick up a psych herx?” I asked.

“Oh, yeah,” she replied with gusto.

“Let’s start that now,” I said.

I told her that I’m getting a puppy in a month, so I want to get “the crazies” out of the way before the puppy arrives. She seemed delighted that I was getting a puppy and asked if it would be the same breed as Gadget. Apparently, I now have medical approval for puppy-lovin’! (Not that disapproval would have deterred me, at all.)

4. I wanted to post some more celebratory blogs occasionally, to keep you all from burning out on my grief, but my computer has been refusing to cooperate.

A long time ago I wrote an essay for my Sick Humor column called, “The Hindrance Dog.” It details an incident wherein a rambunctious new rescue, who is young but strong, teaches his naive handler the dangers of attaching his lead to her mobility device.

I thought this would make for a quick-and-easy post while I worked on items 1, 2, and 3 above, but my computer is refusing to allow me to translate it from its old format. I’ll get there soon, though. Humor is in store, I promise ye.

Instead, here is a different bit of celebration.

I received the email below last night from the Service Dog list on Dogster. I was very honored. Everyone there was very supportive of what Gadget and I went through. (I joined less than two months before he died, though I didn’t yet know that he was dying.) So, it really means a lot to get this posthumous recognition of Gadget — and of our partnership. Thank you, Dogster SD list moderators.

[Accessibility note on the link below: I know guide-dog partners who use Dogster, so I assume it’s text-reader accessible. However, it’s graphically intense, with lots of colors, flashing and moving things, and very small print.]

Congratulations to Gadget’s mom for Gadget being service dog of the month in memory for February!

Gadget was a male Bouvier des Flandres whose page can be seen here:

http://www.dogster.com/dogs/1051350

Gadget passed away in November, but his mom made a wonderful blog about his life and work, and how to cope with the loss of one’s service dog. He was a truly special dog, and continues to impact people today. He knew over 100 commands, and helped his mom not only with her disabilities, but also with greyhound rescue.

So congratulations to Gadget’s mom, and Gadget, we miss you!

Thanks for bearing with me. Another blog will be out soonish.

Peace.

-Sharon and the muse of Gadget


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