Archive for the 'Disability studies/theory' Category



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Rural Difference

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

Vivez la différence rurale!

The theme for the fourth Assistance Dog Blog Carnival is “Difference.” It is being hosted by Kali at Brilliant Mind Broken Body, so please pop on over there later tonight or tomorrow, when it goes up!

I’ve decided to write about being a rural service dog partner, because the great majority of assistance dog (AD) partners are urban or suburban dwellers.

In fact, I have discovered that there is a lot of ignorance in general about rural life in the US. This seems to be even more pronounced in the disability community, because many people with disabilities choose urban living, which provides better access to public transportation, sidewalks, doctors and hospitals, and a larger pool of personal care assistants, among other reasons.

The only group of people with disabilities that I know of that is more likely to choose rural life over urban is people with multiple chemical sensitivity (MCS). MCS is the reason I moved to the country, but my other disabilities make it a complicated choice.

For the purposes of this post, however, I’ll try to focus on the disability community, and especially, on the service dog experience. Here are some issues that I face that urban and suburban AD partners do not.

No pavement, no sidewalks.

Rural very often means dirt roads. Dirt roads aren’t just different because they are not paved. They are often full of rocks, gravel, hills, tree roots and branches. In this area, they are windy, hilly, and otherwise more rugged and harder to navigate.

Dirt roads are also affected by weather in ways that pavement is not. Not only are my roads often impassable (to cars, let alone powerchairs) in winter, due to snow and ice, but in spring — which we call “mud season” (really) — they can be impassable due to mud. Depending on how much money a town has for road maintenance, dirt roads generally get graded between one and three times a year. In my town, they are graded once a year. This means the condition of the road deteriorates all year until it’s graded, when it is then completely impassable (for a few days only) by wheelchairs until cars have packed it down.

Therefore, in addition to the problems occasioned by my powerchairs, themselves, which I have blogged about ad nauseam, I also face uncertainty about whether or how long I can walk my dog for other reasons. And if I do get caught out in a downpour, unlike a city dweller who can nip under a storefront awning to shelter their chair and dog from the rain, that is not possible here.

Here are some captioned videos that attempt to show you the road conditions, since I have never yet managed to convey to a non-rural savvy person what my roads are like using words alone. I feel quite frustrated, actually, that I still am not really getting the true situation across with these videos because when I made them, three weeks ago, the roads were the best they’ve ever been! This gives you no sense at all of how difficult they can be in spring or fall or winter.

Also, a lot of things that I’m pointing out — I give a running commentary — turn out not to be visible because of the poor lighting, due to the shadows cast by the leaf canopy. But hopefully these short videos will give you a tiny inkling of what it’s live in a rural area, using a powerchair for mobility and transportation. If you don’t want to watch all of them, I suggest the second and third ones, although the lighting is the best in the first half of the first video. All videos are captioned.

This is the first video, which I couldn’t load on Youtube, for some reason, so it’s on dotSub.

This is the transcript for video number one.

Below is video number two:


This is the transcript for video number two.

Below is video number three:

This is the transcript for video number three.

What does it mean, as a service dog partner, to always be in the street? Dirt gets between my dogs’ pads, and causes bad mats much more quickly than if they walk on pavement. Their nails also don’t get any wear, the way they do on cement or blacktop, which means more toenail filing or trimming. When people go driving around the corners and hills at high speeds in their pick-ups (which of course is what everyone drives, and how everyone drives), it can be quite scary when trying to get out of the way in time. I have taught all my SDs to move to the side of the road and sit any time a car comes. Barnum hasn’t mastered this yet, but Jersey and Gadget both learned it quickly.

However, while the cars can be problematic, there are few of them, which presents its own challenges. City dogs become so used to cars that they quickly learn to ignore them. Where I live now, cars are infrequent enough that they are an event; consequently Barnum still visually tracks them and is distracted by them, though he’s never had the opportunity to chase one. When I moved with Gadget from my very secluded home, where a car or person could only be seen if it was arriving at my home, he never got used to seeing cars go by on the street, or our neighbors across the way. Anything within a half mile, to him, was “our property.”

Small brown wood-shingled house in fall in New England. The house is tucked on the side of a hill, and there is an incredibly long, winding, steep, homemade wooden wheelchair ramp, with no railings, leading from the driveway down to the house.

This is where Gadget lived most of his life.

Of course, it just wouldn’t be an After Gadget post if I didn’t mention toileting, right? I’ve written numerous times about how important it is to me to train Barnum to go on cue, on any surface. This is much more difficult to train when there is no synthetic surface anywhere near your home. With both Jersey and Gadget, they learned to go on grass, and they’d refuse to go elsewhere.

I planned ahead with Barnum, and he will go on gravel, wood chips, and grass, very willingly. However, it has still been difficult to teach him to go on pavement or cement. I sometimes hurried him from the house to the van first thing in the day, when I knew he really had to pee, and then took him to the library parking lot in town, which is paved, to try to get him to pee there. But he’d just hold it and/or bolt so hard for the grass or wood chips that it didn’t work. By now, he has learned to cop a squat very fast, before I can get him in the van, so it’s no longer possible.

On occasion, I have managed to get him to go in the road by not allowing him to get to the side to pee or poo. Usually this is dirt road, but on rare occasions, when we were able to take long walks, and he didn’t have to go for the first half hour, I managed to get him to go in the middle of the paved road. However, because of my powerchair problems, I have not been able to take him for walks on any consistent basis.

You are probably thinking, “Why don’t you put some pavers or pieces of cement in your yard?” I’m way ahead of you. I was ahead of Barnum, in fact. I put cement pavers, bricks, and blacktop pieces that I scrounged from Freecycle and Craig’s List in his pottying area before Barnum even arrived. The problem is that these are such small spaces, I can’t make him use them, and of course he’d rather use surfaces he’s familiar with. One day he actually pooped on the cement pavers, and I was so excited, I took a picture. See below! This also shows our toileting area.

Doorway and part of exterior wall of yellow wood-shingled house. A metal ramp meets the door, with a second ramp at a right angle down to the lawn. The ground is bare dirt at the bottom of the ramp. Behind it, next to the house, the ground is covered with gravel. There are three toileting areas, about three feet square each, one of pieces of asphalt, one of bricks, and one of four cement pavers. If you look closely, you see a dog poop on the cement pavers.

Nobody can say I'm not trying!

Training and Public Access Challenges

Yes, with both Gadget and especially Barnum, I have tried to expose them to city sights and sounds as part of their socialization. But I can’t get out much, and the day-to-day experiences build on each other, making country sights and sounds much more “normal” to them than malls, buses, sirens, and yes, even cars.

Doing public access training is more challenging: Taking my dog to a grocery store, restaurant, mall, or other places that are considered “everywhere” are not, here. Again, it’s at least a half-hour or 40 minute drive to most of these places. This means a big investment of time and energy just to do a five-minute training session.

We also have to train various skills differently, or not train some skills and train others. Many people train their dog to get their cell phone, or to use a cell in an emergency if they fall or have a wheelchair die on the street. We don’t have a cell phone tower, therefore there is no cell phone service in my town. I have a free cell phone from a government program, which I can use if I am driven at least 20 or 25 minutes — to an area that gets reception.

Internet access (or lack thereof), is also a factor. The only options are either 1. extremely expensive satellite internet, which I’ve been told is comparable to high-speed dial-up, or 2. very slow dial-up, because even with a high-speed modem, because rural phone lines are old and not maintained, so dial-up is generally 28.8K. After years of slow dial-up, we finally got satellite, without which I certainly couldn’t do this blog. However, on my list-servs for dog training, people frequently post videos or offer online training courses or groups that I can’t attend because I can’t use Vimeo, Skype, Ustream, or anything streaming. I can watch Youtube videos, usually, if I wait for them to load fully before I hit “play,” and if I limit the number or amount I watch.

Getting gear or other dog supplies must be done by internet; there is no “local” anything. Even before the internet became the worldwide shopping center, I was buying everything from catalogs. Recently I posted about trouble getting a wheelchair battery replaced. The vendor suggested I get one from a “local” source. The closest place to buy wheelchair batteries is a two-hour drive! When I do need to make returns, I’m told to go to a UPS or FedEx store; however, there are none, even in the larger “cities” 30 or 40 minutes away. I would have to drive at least one-and-a-half hours to get to one. The closest pet-supply store is about 40 minutes’ drive.  Since I don’t drive, any car trip requires someone to drive me in my van and help load and unload my powerchair.

People often suggest incorporating dog training into little daily activities, such as getting the mail. At both my former and current homes, my mailbox is three-quarters of a mile from home — on hilly dirt roads. This is a big undertaking, not a small task! In fact, my favorite walk with my dogs used to be to get the mail — we all had fun, it wore them out, and I got something accomplished! If I ever have a reliable outdoor chair again, I hope to get back to this. It definitely provides invaluable training opportunities.

Dog Work and Lifestyle

Dogs are viewed differently in the country than in the suburbs or cities. Most dogs spend a lot of time off-leash, and this is normal. It is not because we are terrible dog owners who don’t care about our dogs’ safety. It is because usually there are few cars, a lot of open space, and it is a joy to dog and human alike.

Also, fences and long-lines are not always options. When you have a lot of wide-open space — fields, forests, bodies of water, etc. — it is not only natural and pleasurable to let your dog run free, but it can be nigh-well impossible to walk them on a leash in rugged terrain. Someone once told me I should use a long-line on my dog, instead of letting him run loose, at the pond. This is completely ridiculous when there are trees and bushes and tall grass and boulders everywhere, and I’m in a wheelchair. We’d spend the entire time in a fruitless effort to untangle the leash.

I am one of two people, I think, in my town (of 900-something people) who has a fenced yard. My neighbors were very upset when I put in a chain-link fence.  It is a very non-rural thing to do. Not only do I want to stay on my neighbors’ good side because that’s more pleasant, it’s also a safety measure due to my MCS. Further, neighbors are very important in the country, because sometimes your survival depends on their help.

Letting dogs off-leash is not just a cultural value, but a practical one. Many rural dogs work — either hunting or farm work. Dogs obviously need to be off-leash to herd or protect livestock. Many rural people with disabilities are increasingly training their dogs as both farm assistants and service dogs. I hope eventually I will be well enough to get chickens and/or goats, in which case I will rely on my SD not just for personal assistance, but for herding, too.

Rural service dogs might need to be off leash for some disability-related skills, too. For example, I used to email with someone with chemical sensitivities whose SD was trained to alert her to certain chemicals. The handler had life-threatening anaphylaxis when she was exposed to these chemicals, so this was a very important job. Horses were her main transportation, so when the dog was on the job, she ranged ahead of her human partner and her horse, scenting. It worked very well until the handler ran into issues with SD ordinances saying that assistance dogs must always be on leash; she had to prove that for her, her dog could not do its life-saving work on-leash.

Likewise, one of Gadget’s skills, when I lived in my previous home, was to alert my landlord in case of emergency. My landlord and I each had our homes on his 50-acre parcel, but no house, including his, was visible from mine. His house was about a quarter-of-a-mile from mine. Snow often made the driveway impassable, and we sometimes had phone and power outages, which would leave me completely cut off. Gadget had to learn to run to my landlord’s house, bark until he came out, down, wait for a letter to be removed from his backpack, and then run back home.

Since the rescue services (police, ambulance, and firefighters) are mostly volunteers and are coordinating by region, not by town, there are also much slower response times than in the city. This means that SDs who do medical alert or other emergency assistance are even more essential when you know it will probably be at least half-an-hour before human help arrives.

Another job Gadget had, which was not an official service skill, but was very useful, was to alert me to the presence of black bears in or around the house, and to help scare them off. I was very careful to keep Gadget on leash or inside when we were doing this. Black bears usually don’t attack people, but they can cause a lot of property damage, and it’s not good to have them too comfortable around people. I had them climb onto my porch pretty frequently, and once one came through my screen into my mudroom. Gadget smelled them as soon as they were near and alerted me. A friend nearby who did not have a dog had a bear rip a hole right through the garage wall she lived above; the bear was looking for garbage in the garage.

The Advantages of Country Life

After all I’ve said above, you might think, “Why the heck do you live in the country? Why not move to the city if it’s so hard?”

Because I love the country, and because living in the city with MCS was literally killing me. Also, there are a lot of bonuses to country life. I can never imagine being in a city again.

For one thing, having a dog is normal. Almost everyone has at least one. You rarely run into “no dogs allowed” situations. Basically, having animals around, wild or domestic, is commonplace, as are their sounds and smells and bodily functions. People don’t get all squeamish about hair or pee or poop or barking. Having an animal that serves a useful purpose (aside from companionship) is more “normal,” and very few people are afraid of dogs.

Beauty is all around. I love the clean air and the wide diversity of flora and fauna. There is a swamp near my home — it’s about 100 yards from where I stopped in the first video, if I go right out of my driveway. It is home to a great blue heron every summer, and last year a pileated woodpecker raised her chicks in a tree right next to the road. There are turtles, beavers, and porcupines, frogs and fish. (Not so thrilled about the porcupines.) Here is just a glimpse of part of this wetland. It is a particular joy to walk my dog where we can both enjoy the beauty and diversity and freedom that an alive, wide-open, ever-changing landscape has to offer.

A marsh with tall green grass on the left, evergreens on both sides, water stretching as far as can be seen, with water plants and algae floating here and there, and the gray trunk of a tree in the foreground. The sky is blue and partly cloudy. It's a picture that bursts with life, although it also appears very serene; no ripples on the water.

This is the part I come to first, from my house.

I don’t normally let Barnum swim in the swamp because he gets all mucky, but on a hot day, if I can’t take him to the pond, I might make an exception. For those who want to see more, I have an album of five pictures of him swimming here during the heat wave at the After Gadget Facebook page. (You don’t have to be a FB member to view the photos because it is a public page, however they do not include descriptions.)

I hope this has given you a taste of what it’s like to be a rural service dog trainer and partner. I also hope this creates greater awareness in the assistance dog world about assumptions based on urban life. Raising, training, and handling a service dog in the country can present its challenges; by the same token, those of us who do it have a unique perspective and ability to creatively problem solve that others might learn from.

– Sharon, the muse of Gadget (who loooooved the open country life), and Barnum, SDiT, hot dog in the country

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).

The graphic for BADD. Along the top, in yellow letters on a dark green background, it says, "Blogging Against Disablism. Below that is a multicolored square comprised of twenty smaller squares with one stick figure in each, mostly standing, some wheelchair symbols or with canes.

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!)

Waspish Wednesday: Yes! I DO Know How to Operate My Powerchair!

I’ve decided to start a new series, called “Waspish Wednesday.” These will be short posts that will tell readers that, “Hey, that thing you do/say because I’m disabled? You can stop now.”

Today, I went to the doctor. Not to put too fine a point on it, but I hate this doctor. If I never had to see him again, it would be too soon. He’s the only person on the planet I’ve ever threatened with an ADA lawsuit (and I meant it, too).

However, this particular thing that he said, and that he has said every single time I’ve seen him in the decade I’ve gone to his office using a powerchair, is — sadly — not unique to him. It is ubiquitous in medical settings: doctor’s offices, hospitals, even occasionally home visits (VNA or home draw programs), etcetera.

Here are the people I happen to remember who have said this to me: PCPs, surgeons, interventional radiologists, MRI technicians, nurses (of all varieties), office staff/clerical, phlebotomists/lab technicians, and every specialist imaginable.

What happens is this. We are about to leave or enter an office or corridor, or we need to reposition ourselves in an exam room, operating theater, or blood draw cubicle, and I move.

“Hey!” They say, in a tone that is half amazement and half amusement. . . .

  • “You really know how to corner in that thing!”
  • “You really know how to move in that thing!”
  • “You’re really good at that!”
  • “Wow! You can turn on a dime!”

They are jocular and seem pleased that they have been able to serve up this compliment, that they have noticed this rare phenomenon and can point it out to me.

What I want to say, but never do is, “Yes! Isn’t it amazing that I know how to operate the mobility device that I’ve used everyday, all day, for several years? This powerchair that I use inside my non-wheelchair accessible house, everyday, for years?”

Or, I could say (but don’t), “Actually, I’m pretty sucky at it. You should see the inside of my house, where every doorway is splintered and chipped, where every tight corner has had the plaster dinged all to hell, where I took the strip of molding off the bathroom door (and we never even bothered to put it back), and where the plates of protective Plexiglas are splintered where I hit them!”

Or, I could say (but don’t), “Yes! And look at you! You are walking! You really know how to ambulate! You can really move on those feet! You sure know how to work those legs! Good for you!”

What I say when I am in a really good mood or I really like the person, is, “Thank you.”

Otherwise, what I say is (nothing).

I have not been happy with either of these options. So, now I’m saying something else:

Hey! General public! Please stop acting like a disabled person’s ability to use the mobility equipment we use every day to get around is a big freaking deal! Or we might just start telling you, in a congratulatory and avuncular manner, how impressed we are that you know how to operate your shoes.

Thank you.

– Sharon, the muse of Gadget (I looooved to run next to the chair), and Barnum (SDiT?)

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

Assistance Dog Blog Carnival? Your opinion, please!

I love blog carnival and blogswarms. I try to participate in them as much as I’m able (which is a lot less often than I’d like). Lately, it’s been occurring to me, with the blossoming of so many new, thoughtful, lush, sassy assistance-dog blogs that it might be time to start an AD carnival or to do a blogswarm.

However, this would require many interested participants:

– Sites to host the carnivals (if we went the carnival route);

– Bloggers to submit their posts;

– Readers to read the blogs!

What do you think? If you are a blogger, would you be interested in submitting/writing for AD carnivals?

If you are a reader, would you enjoy blog-hopping to learn more about more different types of ADs, blogs, and handlers/trainers?

My thinking on this is still in its embryonic stages, but here are my thoughts so far (feel free to disagree/suggest/tweak):

– All forms of ADs (guide, hearing, service, and all its permutations) most welcome.

– Any blog that is primarily or partly related to ADs could host, including puppy raisers, AD programs partner trainers, private AD trainers, family or individual handlers, SDiT blogs, etc. I think in the beginning, though, I’d like to give preference to partners/handlers as hosts.

– Those submitting/contributing posts for carnivals wouldn’t have to be AD partners/trainers/etc., or have blogs devoted to the topic, but their carnival post would have to be “on topic.” For example, a veterinarian could contribute a post about treating a service dog; a PWD could post about their decision-making process as to whether to partner with a guide, hearing, or service dog — including choosing not to; a friend or family member of an AD partner could write about what it’s like to have an AD “in the family,” etc.

– Based on my own limitations and the assumption that many hosts might also have trouble meeting deadlines, I think perhaps a quarterly carnival would be often enough, and if that goes well, perhaps expand to bimonthly, to keep the pressure low.

– We could also consider opening the carnival up to working dog blogs — not just assistance dogs. This could include SAR, police K9s, herding dogs, dog actors, etc.

Please comment on my questions and ideas, above. Also, please pass this post along to any other bloggers you think might want to weigh in. Thank you!

Without Gadget, Who Am I? A SD-less Service Dog Partner’s Identity

Every month, there is a disability blog carnival. Every month I start a blog for it and don’t finish it by deadline. This month’s carnival topic, “Identity,” is particularly close to my heart, so I’m forcing myself to squeeze out this post on time.

My identity, for years, has been inextricably bound to being a service dog partner. In fact, my avatar is ServiceDogPartner for most sites that require them.

How does this identity play out in everyday life?

A telling, one-word answer is “We.” Any activity, especially if it involved leaving home, required, or was enriched by, the participation of my service dog; therefore, we were a we/us, not an I/me:

  • “We’re going to the doctor tomorrow.”
  • “We went for a walk.”
  • “We picked apples in the back yard.”
  • “The manager gave us a hard time about entering the shop.”

In fact, the first big “Aha moment” I had about what a difference a service dog could make in my life was when Jersey, my first SD, and I went to the grocery store without human help, for the first time in years.

Jersey in profile

Of course, I had trained Jersey, devoting all my energy to the endeavor for many months, in the hope that she would make me more independent, less restricted, but I don’t think I actually believed my own pep talks to myself until that day at the grocery store. What a revelation.

Jersey went everywhere with me. She reduced my isolation. She helped me participate in activities around my home that I otherwise couldn’t have done. For example, I was able to garden because she carted the tools and plants out to the yard and offered bracing and walking assistance when I became too exhausted. At the store, she carried my money, pills, water, and grocery list in her pack, as well as small groceries. When we got home from the store, she carried the bags from the van to the house, and from the door to the fridge. In little ways, every day, she helped me save energy that I could use on writing or talking to friends or just resting.

That was at a time when I was less disabled than I am now, and with a service dog who knew half the skills Gadget did. Jersey changed my life, but Gadget revolutionized it.

Sharon, Jersey, and Gadget

How can I even put into words what Gadget meant to me, how inextricably he was entwined in my life, how he was a part of my body, mind, and soul? It’s a struggle I have every day now, as the anniversary of his death descends on me, and my grief at his loss feels overwhelming. I grope for language that can convey who he was/we were. My unexpressed grief is like a magnet attracting hard, metallic shards of sorrow, anger, confusion, and fear; it grows larger and heavier, digging into my heart and weakening me.

Where do I begin?

This is the crux of the issue in so many ways: Where did I begin and Gadget leave off, or Gadget begin and I end? How do I continue without him, without this part of myself? Without him, who am I?

Maybe accepting my inadequacy to truly convey what Gadget was for me is the essential first step in beginning to define it, or at least hint at it:

  • Gadget was always with me, even in my dreams. This was true with Jersey, too, after we’d become a working team. Just as, after I became disabled, in my dreams I also had MCS and CFIDS, there came a point where Jersey was by my side in my dreams. When Jersey retired and Gadget took over, he entered my dream world even more quickly than Jersey had. Even in my subconscious, he was an extension of me. As I’ve written in previous posts, after he died, he haunted my sleep.
  • Gadget was my hands. He turned lights on and off. He opened and shut doors. He picked up things I dropped.

This video shows some of the skills above and belowRead the video transcript here.

  • Gadget was my legs. He brought me water. He brought me the phone. He helped me transfer.
  • Gadget was my voice. He carried messages to Betsy from me. He understood and followed signed requests. He let my PCAs know I was awake and needed their assistance.
  • Gadget was my memory. He alerted me (sometimes woke me) if the oven timer was going off or if someone was at the door and I’d otherwise sleep through the appointment.
  • Gadget was my safety. He knew how to run to my landlord’s house with a message if I was stranded. He helped keep me warm when I was without heat during the week-long ice storm power outage. He stood by me, barking and growling, if a strange person entered my home unannounced.
  • Gadget was my strength. He helped me stand up and walk when I was too weak or dizzy. He helped pull my manual wheelchair if I couldn’t use my powerchair. He carried or carted things that were too heavy for me.

That tells you what he was to me, but not who he was.

  • He reveled in his strength and speed. He liked to slam the doors shut. He loved to run, to wade in the water, to go on long walks off-leash, always checking in to make sure I was following, or doubling back to me before sprinting off again.
  • He kept me company. He was warm and soft and loving. He would plant the top of his head against my chest so I could scratch behind his ears. He put his head on my leg in the car.
  • He was calm, grounded, wise, and still. He let things roll off his back. He was patient and relaxed. Not much got to him. He was a dude.
  • He loved to train and to learn. He loved an intellectual challenge. He liked to figure things out. He made mental leaps that left me breathless and my lesson plans obsolete in moments.
  • He was trusting and knew how to relax. When invited onto the bed, he’d drape himself over me, or push me out of the way with extended legs. He let himself be poked, prodded, manipulated, squeezed by me, my PCAs, and countless veterinarians.

We fell asleep together After our nightly tick-check, we were both so relaxed we fell asleep just like this.

  • He was funny and sassy. He was his own dog. He wasn’t above sneaking around to get his way. He’d let himself outside when he wasn’t supposed to, or leave my room to visit with his favorite of my PCAs when he was supposed to be in my room with the door shut. This is what happens if you give a smart dog the tools to obtain his own freedom and independence.
  • He was my best friend and my comfort. I loved the way he felt, the way he smelled. My hands knew every inch of him, every bump on his skin. My eyes knew every spot or stripe of his coat.
  • He was my traveling companion. He was home.

I needed these parts of him just as much as the others, because his separateness, his unique personality and doghood, was part of our relationship and thus our partnership.

After Gadget died, I’d turn to look for him to help me in the ways I’d been accustomed — to open doors, to carry messages to Betsy, to bring me the phone. I felt as if a piece of my body had been severed, as if I was reaching out my hand to open the door and discovering I had no arm. I felt such deep pain, loss, and confusion when I realized again and again that he was not there that it felt like emotional phantom limb pain: the parts of my body and mind that lived in Gadget had died, and now I was no longer whole, but the pain of what had been there lived on.

Now, without a service dog — a non-partner — who am I? Where have those pieces of myself, and the pain of the shadow parts, gone?

In some ways, the pain has dulled. I don’t feel there has been much actual healing, more of a sense of physical and emotional numbness, the exposed nerves on ice. I have mostly adapted to not having the assistance I did before, mostly forgotten what it was like for life to be easier. I think this is a typical part of living with disability — we become habituated to our limitations and therefore don’t realize just how much pain, exhaustion, isolation, or limitation we are dealing with, until something (a medication, a piece of medical equipment, a personal assistant) eases the difficulty. Then we think, “My god, why didn’t I get this help years ago?”

Having Barnum in my life muddies the picture. He is my dog. He provides companionship. But he is not (yet?) a service dog.

He takes away energy, uses my strength, taxes my limbs. I am giving, giving, giving and getting nothing back, physically. Emotionally, it’s a cocktail: I am exhausted, frustrated, and mentally and emotionally overworked most of the time, yet he also makes me laugh, makes me feel loved, provides companionship, gives my life goals and direction.

Nonetheless, training a successor without a current SD in place keeps me in limbo. He is not yet a service dog. He cannot even be called a service-dog-in-training, because he does not yet have the obedience or public access skills or the beginnings of the service skills necessary to earn that title. Still, almost all my time and energy feed the hope and belief that some day he will be my service dog.

I hate existing in states of betweenness, living on hope or the promise of future gains. It was one of the promises I made to myself when I first became disabled by chronic illness: I would not devote my life to cure, not spend all my mental, physical, emotional, or financial resources on experimental treatments that might someday have the potential to reduce my illness somewhat — or not. I do get treatment. I do seek improved health and function. But, for fifteen years, I have refused to sacrifice my life now — which is real and true — for an ephemeral maybe of the future. I’ve seen too many people put their lives on hold until they get better, only to come to the crushing realization five, ten, fifteen years down the line that they are still sick or disabled, no better off for their grasping after a cure, just older, and without the skills or assistance they could have used their energy on to have a richer life with disability.

Yet, here I am, doing much the same. In my heart, I am and always will be a service dog partner. Even though I have no canine assistant now, my life revolves around cultivating one, even knowing that there is always the chance we might fail. Barnum could develop a physical injury or illness or a temperament issue, or suffer a training catastrophe, that would render him unfit to work as a service dog. We could become a great SD team and then have him get sick, traumatized, or die before his time. Even if he does turn into an excellent SD, living out a long, healthy, happy working life, the fact remains that I am sacrificing a great deal now, every day, for that future.

I have arrived at the answer to my question: Who am I without a service dog?

I am a person who is willing to lay almost everything on the line, including one of my fundamental beliefs about the best way for me to live with disability, in order to become an active service dog partner again.

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.


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