I didn’t realize until making the decision that I would benefit greatly from a service dog that my identity for these past few years has had a lot to do with invisible illness. I think that everyone else seemed to be making such a big deal of it and turning it into such an obstacle that I had to do something, make some decision as to how I related to this problematic piece of my persona, and there it was. It probably didn’t happen like that at all (I honestly don’t know) but for better or for worse, in sickness and in lack of health, I have tied myself to invisible illness. The specific struggles it brings have helped me bond with friends, find causes I care about, and shape how I interact with the world. Like I said: it’s a big part of me.
The thing about invisible illness/pain/etc? If you can see them, they’re not invisible. This brings me to the present day and my dilemma. Sure, my chronic pain hasn’t manifested in a physical form and started handing out pamphlets; my ovaries don’t have a flashing neon sign proclaiming POI; none of the various and sundry things have become any more visible in their own right, but when I decided that partnering with a service dog could be the route for me, I became visible. To have a service dog, you have to also have a disability, so whenever I identify Stormlight as an SDiT (service dog in training), the conversation goes one of two routes.
The Conversation, Take 1
Participant One could be anyone, but they have just discovered Stormlight is a service dog in training.
Participant Two is me, Meg. Average-tall pale white girl with long dark brown hair and greenish eyes, larger than liked, and somewhere between antsy, irritated, and resigned by the time participant one, the questioner, has their first sentence out.
P1: So you’re training her for someone? [Note: Frequently, it’s some variation on “You’re training her for a blind person?”]
P1 then may say that it’s cool or follow up with, “is that your job?” or “So you’re a dog trainer?”
P2’s expression becomes forced and, unless P1 has (to be blunt) already been too much of an ass to tolerate any more, stays as pleasant/polite as possible.
[I’ve been playing around with various options for my reply and have recently settled on the following. Believe it or not, it seems to be the least awkward route I’ve found]
P2: No, I’m a disabled person. [this may take another few turns to reach, but I have presented the most direct and basic version of this conversation for your reading pleasure]
P1 becomes momentarily uncomfortable more often than not and then perks right up.
The Conversation, Take 1 V2
NOTE: This may be preceded by some variation on the dialogue above or may be on its own, in some form such as the variation shown below. Please do not try this at home.
P1: What kind of dog is she?
P2: She’s training to be a service dog. [Typically in this variation, Storm is wearing her cape reading “Service Dog In Training” or has been verbally identified by me as “in training”]
P1: No, I mean, what is she for?
P2: She’s for me.
P1: But what are you training her to do?
P2: *getting understandably irritated as P1 ignores polite ways of ending the line of questioning* I’m training her to be my service dog.
P1: [something along the lines of] But what is she for?
I’m going to interrupt this program for a minute for some commentary. Those aren’t transcripts I’ve typed out, but I’ve had conversations within a few words at most of those and it’s frankly irritating. I try to politely shut down the invasive questioning in the second version, and I don’t think it’s ever actually worked. In version 2, by the way, the person often already knows she’s mine and is for me, and if they did not then they have learned it by their second conversational turn. Let’s recap: service dogs partner with people who have medical diagnoses with enough impact to be disabling, and it frankly doesn’t matter whether they’re visible, invisible, psychiatric, physical, etc. for the purposes of determining that you “qualify” for a service dog (oh, goody, I qualify! — this is sarcasm). So, to have a service dog, you must have something “wrong” with you. What people pursuing this line of questioning are trying to ask, without actually saying words that even they realize would be obnoxious, prying, or offensive, is: what exactly is wrong with you that your dog is there to fix? Often it’s just curiosity. Sometimes, I offer information about our partnership and what she will end up helping me with, but when I do so it’s because I want to. It’s not information I owe to anybody. It’s also not information that people have any right to demand from me. Your curiosity, however innocent you may consider it, does not trump my privacy or my dignity as an actual human person standing in front of you. This is something that an alarming number of people seem to have trouble grasping.
I try to stay polite. However absurd this may be, I know that Storm and I may be the first service dog team (in training or otherwise) that this person has really interacted with. As such, we have some responsibility not to leave a bad impression that will impact other teams, and I’ve decided that that means I can’t respond in a way that prying like this deserves. It can go on for a few more rounds of similarly worded questions and responses to what is outlined above, if the person is being really clueless or just completely ignoring increasingly obvious attempts on my part to shut them down. If they won’t back off, and I’ve just had it, I make an (usually successful) effort stay civil, if not necessarily warm and cheery, and explain that it’s not particularly polite to pry because when Stormlight is working, she’s like any other medical assistive device (albeit cuter and alive and all) — and she’s not your business any more than it would be your business to ask these questions about someone’s cane or wheelchair or medication.
What I want to say: Sure, I’ll tell you all about why I need Storm, but first you tell me about all of your medications and why you need all of them. Sound good?
I don’t hate curiosity. I hate that the kind of conversation I’m referring to and have tried to re-create above is really just somebody who wants to know what’s wrong with me. It’s not healthy curiosity or a desire for harmonious understanding and the person on the other end is an adult.
I love curiosity, as a matter of fact. I’ve got loads of it myself. When children are curious, I actually love it — especially because they’re so innocent. They’re not asking what’s wrong with me; they just don’t already know what a service dog is, nor do they think they know, and the little kids who would like to say hi and don’t get what it means when I or their parents regretfully say that the dog is a service dog or that she’s working — they’re actually asking what they want to know. What does that mean? I love when the little ones ask and I get to tell them. For a little girl who saw Storm in a store and grabbed her mother’s hand, whose mother explained with a slightly apologetic smile that her daughter had just jumped because she was afraid of dogs, I got to explain it my way. I told her that I was really sorry that seeing Storm scared her, and had Stormlight move to sit behind me. I explained, completely honest, that Storm is actually a special dog who has a job as a service dog and helps me with lots of things. Without going into PTSD, I told her that Storm became my partner after some bad things happened that made me sick and now she’s there to help when I’m scared. It may have been the most honest way I’ve ever explained storm to anyone, and it was to a little girl we’d accidentally scared. I guess I wanted her to know, in some way, that not only did we not mean to scare her but we hadn’t come into this space that she could usually expect to be free from dogs lightly, because we knew what being scared felt like. I reassured the mother and daughter that Storm loves people and kids and is exceedingly gentle, but the mother was already smiling — not just the apologetic smile from before, a stronger one. I think (hope?) she enjoyed the explanation for her daughter.
That was a tangent, I realize, but it’s one I’m leaving in (sorry, readers! — but you can picture the cute little kid and the sweet dog and the whole thing in Macy’s for your enjoyment). It’s a nice way to lighten the mood of this post so that it isn’t just an angry and sometimes sarcastic tirade about humanity.
Circling back to where I began, I still think a great deal about chronic and invisible illness. I still consider myself just as much part of that community. It’s changed, though, since I can’t “pass” anymore if I’m with Storm. She’s part of how I’m taking steps to heal or at least manage my life and I’m not ashamed of that. I think I could even learn to be proud of taking this step, but it’s not a banners-and-announcements kind of proud. It’s still a private proud. It’s a proud that keeps my medical life secret, invisible even when Storm’s presence gives away that something must be there, unseen.
Please, don’t be the person asking this.
Respect my right to function without exposing intimate details of my personal life.
Thanks.
Operation: SuperStorm 