How To Be My Guide Dog

There are a lot of things I need to be happy that feel unreasonable to me.

For example, it’s usually not possible for me to be comfortable in chaotic environments, like bus stations and sports bars. Or when the refrigerator is buzzing at the wrong pitch. Or when someone says words near me that require a response when I wasn’t prepared for language.

If it were just a few things, I imagine I’d be ok with it. But it’s a lot of things. They’re things that interact with nearly every aspect of daily life, imposing all sorts of constraints on my existence, and especially on socialization. Imagine being invited to meet friends you like a lot for lunch, but the place they’ve chosen has five car alarms going off inside. Or always having to speak a second language, any time you want to communicate in bodyspace, that you aren’t close to fluent in. Or a party where people whack each other with baseball bats at random. “What’s wrong, don’t you like parties???”

I’ve just spent a month doing a lot of traveling to visit family. As a result, I’ve had much less control over my experiences than I usually do. I’ve had little control over where I sleep, where I work, what I eat, who I talk to and when and how, what I hear, what I see, what I smell, etc. For a whole month. It's been... stressful.

So I’ve been thinking a lot about my responses to these things. By default, it seems I try to ignore or endure all this stuff. In the company of others especially, I try to behave as though everything is fine. “I’m going to run away because there is a light flashing in the window of the building next door” is not a thing I enjoy saying to people who don’t know me well. “Omg she’s such a prissy little princess.”

And I’ve noticed I’m really not being very agenty about any of this, partially because I’ve only recently recognized that it’s even a thing, and largely because I’m ashamed of my weaknesses. (And we all know that if you ignore something you’re ashamed of, it goes away.)

But I got to hang out with one of my friends who knows me well while I was visiting the Midwest, and he was proactive about helping me be comfortable. It was amazing. He did things like not talk to me while I was reading the menu, suggest that we go for a walk in a quiet park, and make simple decisions on my behalf when I was too overwhelmed to think.

I’ve come to think of it as “being my guide dog”, and I was immensely grateful.

I suspect I have a lot of friends who would be eager to help me in similar ways if only they knew how. One step toward a more agenty approach is to create affordances for those friends to make things easier for me when we’re together.

So I’ve compiled a list of behaviors that constitute “being my guide dog”. I’ll try to add to it over time as I learn more about myself.

Travel

Travel is the most stressful thing I do regularly. It tends to involve high-stakes decision making under time pressure in extremely chaotic environments while people try to talk to me and ask me questions. (Think of airport security, or a subway station with crucial announcements over a shitty loud speaker.) Intervening in this area is very high leverage for increasing my comfort.

• Literally guide me around.
• Meet me at the airport or bus station and tell me you'll take it from here.
• Know how to get where we’re going.
• Choose streets with fewer cars and less chaos.
• Take my hand and decide when we cross the street.
• Coordinate transportation for me.
• Hail the Uber and identify it when it arrives.
• Tell me where to be when, how to get there, and when to leave my house.
• Prevent me from having to drive at night, or in the rain.
• Prevent me from being rushed.
• Offer to drive me.

Environments

I am almost literally never in an environment that makes me feel really safe. The safest environment I've ever been in was a Zen temple on top of a mountain in rural North Carolina during a silent retreat. "Make things more like a monastic retreat" is a good rule of thumb when crafting a Brienne-friendly environment.

• Choose a calm and quiet meeting place.
• Choose restaurants with no TVs or loud music.
• Turn off the TVs.
• Only play music that lacks lyrics.
• Play rain and thunder sounds (you have no idea how soothing this is to me).
• Take me to a lake, river, creek, or garden.
• Pay the bill and send me a reimbursement request via Square.

Communication

Talking out loud is hard for me. I try to think the thoughts, and the feedback from my mouth and throat and ears distracts me. Parsing speech is also hard. So being asked a simple question can be a bit like, "Quick, what's 345 times 78?"

• Speak slowly, clearly, and at a moderate volume.
• Use a direct communication style (be blunt), to minimize the cognitive resources I have to spend on figuring out what you actually mean (odds are good I just won't spend them, and I'll fail to understand you entirely).
• Avoid sarcasm and other humor that relies on awareness of deception.
• Relax and be comfortable with silence (don’t talk just to fill silences).
• Don’t interrupt me.
• Don’t expect me to interrupt you when I want to get a word in. I'll get frustrated and just stop trying to talk.
• If you want to show me text on your phone, read it to me instead of handing me your phone. That's probably a little counter-intuitive, but it's some kind of switching-modes thing that is really hard for me.
• Ask me specific questions (less like “what have you been up to?”, more like “what poetry have you been learning?”).
• Prevent me from having to make phone calls.
• Don’t talk to me while I’m reading (as from a menu).
• If I’m reading or have been silent for a long time, text me the first line of what you want to say (it gives me time to adjust, and gives me the option of responding via text). This is especially good for questions.

Group Contexts

People are chaotic. More people are more chaotic. I'm often debilitatingly overwhelmed in groups.

• Speak to me only when nobody else is talking; don’t start a side conversation with me.
• Don’t invite more people at the last minute.
• Use hand signals to auto-moderate group conversations (ask me how if you’ve never done this).
• Give me the end seat at the table so I hear fewer discussions at once.
• If you're high status in the group or are otherwise the center of attention, set an example of conversing clearly and patiently.

Self Awareness

The more overwhelmed I am by external stimuli, the less likely I am to be aware of my own internal state. I'll also be less aware of your internal state, even though I'm perfectly capable of empathizing with you when I manage to devote resources to it.

• Remind me I have noise-canceling earbuds.
• Remind me I have night glasses for bright lights.
• Remind me I can go somewhere else.
• Ask me how I’m feeling.
• Tell me how you're feeling and what you want, at the slightest provocation.
• Ask me how I think you’re feeling. Connecting with you empathetically can actually be grounding, especially if you're feeling calm and confident.

To be clear, you don’t have to do any of these things when you’re hanging out with me. I'm not even making a request. I've gone my whole life without people catering to my pesky little preferences in every interaction, so I'm not depending on you to do this. I'm just providing an opportunity.

But if you’re actively looking for a way to make my life easier, doing any subset of these thins will help. If the spirit of the entire list appeals to you, you can tell me, “I want to be your guide dog” when you see me (or beforehand), and you will probably find that I’m much more relaxed around you.

Bodyspace

It’s well past time for us to stop saying “irl” when we talk about the part of the world that our bodies occupy. Same for “in person”.

A few days ago, I was at a cafe, when the fifty-something stranger sitting beside me said, "Oh, you've got one of them fancy phones! ‘Smart phone’, right? I've been thinking about getting one, but I duuno if I'd be able to use it." I was a little startled to encounter someone who was unfamiliar with smart phones, but I didn’t think much of it.

Shortly thereafter, I had lunch with my brother and his girlfriend (both of whom are in their 20s). We were all visiting my hometown. She also had one of them fancy phones, and she was showing us how her followers had responded to the photos she’d posted of her visit.

I thought of the older man then, and the comparison filled me with warmth and transcendence. I became aware that there’s something wrong with the way I’ve been thinking of on-line interactions all this time.

“Birthform is not true shape. I am not some hairless ape,” as the saying goes. I’m information that happens to be encoded, for now, mostly in a squishy ape brain. But it’s the information that counts.

So this is me talking to you right now. Even though it's across time as well as space. Me. In real life. In person. Our togetherness is not somehow fake just because I'm not looking at you with my eyeballs and vibrating my vocal chords. I am with you more certainly than if our bodies silently shared space on the same bench while our minds moved elsewhere.

There are many people who see my body on a regular basis, but are far less familiar with the patterns of my mind than is someone who’s read a single Agenty Duck blog post. If you read my thoughts, then you know me, regardless of whether you’ve encountered my body in bodyspace, because I am those patterns.

And I can go so many places, and be together with so many people, while my body chills in an otherwise empty room. My keyboard is as much a part of my body as is my larynx, and Agenty Duck is as much a part of my home as is my kitchen.

When my friend took out her phone and showed us her Instagram photos, especially the one of the winery right by my mom’s house, I felt the presence of her followers in my little town. I felt the expansiveness of her augmented mind, how tremendously powerful she is compared to the man who dunno if he can use one of them fancy phones. She is something different. Something new.

So no more “irl”. No more “in person”.

We are bigger now, and our world is deeper. Let’s talk about “bodyspace”, denying neither the analog sensorium nor the digital realm. Let’s not slip into oppressive patterns of speech and thought that mask the extent of our reality.