“When a woman gets on stage and makes a ton of noise, she’s breaking the rules about how to be a woman. And that idea of freedom and that idea that the rules don’t hold you, it spreads to everybody in the room. Everybody feels that sense of possibility breaking open.” Sara Marcus, author of Girls to the Front: The True Story of the Riot Grrrl Revolution

I’ve gone through periods of my life where I am just so damn angry. One such period pushed me to start my first blog, which I centered specifically around having a disability. I wanted to explore how that felt in an open space, not just behind closed doors, in therapy, with my closest friends and family. I wanted to have conversations about how people perceive those with disabilities, what perspectives lay outside my own. Certainly, I wanted to have cordial discussions, but if I’m being honest, I also really wanted to rant. I wanted to advocate for myself and talk about injustice and leave it all bare. I wanted to make noise.

I think way more about making noise than actually doing it. You might call me mousy, and it wouldn’t be an ungenerous term. Twice in as many weeks, two different people have told me I have a “strong personality” and both times I had to remind myself they were talking about me. Maybe I am noisier than I perceive. Maybe there’s a sea change happening that I haven’t even noticed yet.

Last week, I attended a talk on feminism by Andi Zeisler, one of the co-founders of Bitch magazine. During the q and a, an older gentleman got up and started raving about how he couldn’t believe we were all here celebrating a magazine called Bitch, how could we as women use that word, and also, we all really do just hate men, don’t we? I felt like I was in the campiest trope of a movie, where the script just says, “Ok, brain dump all the anti-feminist bullshit you’ve heard people spouting since the 1950’s right here. Make sure you really mansplain it too. Go!” As he ranted, as my jaw dragged on the floor, I could feel the room stir, shock giving way to restless mumbling, the tension escalating with my every heartbeat, until I was sure we were gonna start a riot. I felt the riot in my body. We all felt it.

“Why are you fucking here?” someone demanded behind me and we all collectively agreed. It was one thing to hold these opinions after years and years of women fighting for themselves and men who get it fighting with us. It was another thing to hear those opinions in a space that should have, by its very nature, deterred them. I know how privileged I am to have barely scratched the surface of the worst of it. But I was seeing a little of that surface, and seeing the response, and knowing that, if Andi Zeisler hadn’t deftly handled the situation as she did, we would have all made a hell of a lot of noise and I would have welcomed it.

I often feel that visceral need to make noise, to say things loudly, let people stare, they’re staring anyway. I’d like to give them something to really see. I can’t count how many times I’ve been shushed in public for saying even the slightest “off-color” things. Sometimes I just want to scream: “People! We all poop, we all have sex, we all cry, we all die eventually, get over it!”

Mostly my want for screaming threatens when I feel like I’m being pigeon-holed into a box that’s labeled “blind” or “woman” or “queer”, a box whose label means that people don’t have to listen as much. When I’m walking down the street, and someone stops me to try to pet my dog, or when someone drunk tells me I’m pretty at the bus stop for the umpteenth time, I just want to scream, “Fuck you!!! Fuck you!!!” More than that, I just want to scream no words, just sound.

Somewhere in this noise, too, there is kindness, there is joy, there is passion, there is the overwhelming want to grab hands and hug and scream with others, just because we are so here and right now and alive. There is rage in noise, but there is also ecstasy and peace.

In her poem “Eve’s Mouth”, Alix Olson repeats one phrase several times: “She screams at the top of her lungs, “I’m whole! I’m body, I’m heart, I’m mind, I’m soul!” I think this gets to the heart of what we want. We want to be seen as everything human we are, not just “woman”, “queer”, “trans”, “black”, “blind.” When we’re seen for all we are, the beautiful and the flawed bits, we are given so many possibilities. We are open to receiving them, and offering possibilities in return. When women make noise, when social norms are challenged, we are thrown for a loop, thrust into a world where what we’ve thought and perceived is no more, and what we might build could be infinite. I’d argue that sometimes, most times, this is the best possible place to be. Body, heart, mind, soul, whole.

I’ve been hungering for short hair for years, but it’s been a slow process. As a teenager, I wanted nothing but long locks, all the way down my back. I wanted ponytails on hot days and updos for fancy occasions and a thick mane cascading down when I pulled all the pins and bands and clips out at night. I wanted a curtain to hide my face behind. But, I could only grow it partway down my back before my impatience would flare and I’d hack it up to my shoulders again. The ponytails were always lumpy, the pins hurt, the long mane was more limp than luxurious.

In college, my desire for short hair coincided with coming out, and my desire to be read as a little bit queer. I thought perhaps having what my friends and I affectionately called the “dyke haircut” would cut down on people asking me if I had a boyfriend. I only managed to cut my hair to chin-length during those years, because as much as short-short hair intrigued me, I was also afraid of sticking out even more than being blind already stuck me out.

Finally, in my twenties, I was ready to commit. I liked the idea of a “pixie cut.” The stylist who cut my hair in Minneapolis wasn’t keen on this; he said that he thought my forehead was too big for a pixie cut, and that it would take more maintenance than he thought I wanted. He may have been right about the maintenance; I can’t be bothered with much more than washing and brushing, which is why my ponytails always had lumps. I don’t know about the big forehead. He said his girlfriend looked a bit like me, and he’d seen pictures of her with a pixie cut, and it was all Big Forehead. I appreciated the honesty, truly. It’s harder than you’d think to find sighted people who will tell it like it is and not worry about offending me when really, what offends me is walking around with a big forehead or a weird-fitting shirt because no one could summon the nerve to tell me. So, while I wanted the short-short hair, I also respected his reservations, and continued with my safe and short-enough bob.

When I moved to Seattle, I tried again for short-short. The stylist I consulted was concerned about short hair being at odds with my face overall. It wasn’t just my forehead this time, the angles of my face weren’t made for anything above the chin. I let it go again, because I was paying her to know best.

The last straw came a few months ago when, for several mornings in a row, a man followed me down a particular block in my neighborhood shouting, “Are you blind? Are you blind?” at my back. These encounters happened early in the morning, before most of the world was awake, before the Seattle winter daylight filtered weakly through the clouds. It was obnoxious, and frightening, and I was generally fed up with this and situations like it, where I felt my feminine looking hair made me more vulnerable. I was tired of looking blind and soft. Though I don’t think I should “have” to chop off my hair to cut down on street harassment, I wanted short hair anyway, and I knew I wasn’t likely to get it at a salon.

So, on a Friday night in early March, I stomped through my friends Arlie and Betsy’s front door and said, “Let’s cut my hair.”

Arlie calmly said we could do it over the weekend. I not calmly rejoined with, “No. Tonight. Now. If I don’t do it now, I might not ever do it.”

So, fortified with a few gulps of wine and a fizzy feeling of the unknown, we set to work in the upstairs bathroom. Rather, Arlie set to work with clippers and his camera. As the whirring blades made their first swipes at my too-long hair, I was so happy that there was, for once, no turning back.

I love my short-short hair. It gets out of the way of my bare, un-made-up face. It barely wisps the back of my neck. It sometimes sticks up a tiny bit on the top. No strange man has asked me about my boyfriend since March.

For weeks after my haircut, no one spoke to me at all on the bus. I like to think this wasn’t coincidental. Maybe it was, but regardless, it was such a lovely respite, to go about my life without being approached by people I didn’t want to talk to, most notably men who wanted to comment on my looks or my blindness. As my hair has gotten longer, the Kiva comments have come back, most notably, “what a beautiful dog”, “can I pet your dog?”, and referring to the dog while not actually acknowledging me. It’s annoying, but certainly better than being followed or asked for my phone number to give to some dude’s blind “friend.”

Again, it’s a tough speculation to swallow that hair makes a difference to catcallers and other bored people on the street. I love my short hair, but that shouldn’t matter, and yet, at least in my experience, it seems to. Long hair says femininity, vulnerability, approachability. I’m not sure what short hair says. All I know is that it leaves my face out there in the world, plain and simple, big forehead and all, no hiding. No hiding seems to suit me best.

When I was a kid, my classmates thought it was the best thing ever to come up to me and ask, “Do you know who I am? Do you recognize my voice? Guess who?” It was especially awesome, I think, because they didn’t even have to cover my eyes. They could just ask and, depending on my answer, either be impressed that I remembered their voice or scornful that I didn’t. Wasn’t I supposed to be exceptional in my voice recognition skills? In all honesty, I’m pretty sure my recognition was about 50 50. I’m not Daredevil, or any other “inspirational” blind fictional character, and I can’t remember a voice I’ve only heard a few times or haven’t heard in years.

This might seem like a little kid harmless thing, and mostly, it was, though it persisted well into high school. By then, the “guess who?” among my friends came accompanied by poking, tickling, and other physical contact as code. Code for, “We’re teenagers, and this is what we do.” Looking back now, I’m sure it was just a form of nonvisual communication and, likely, affection. This was what replaced eye contact, or a smile across a crowded room, or a mouthed greeting in class. Instead of those things, I got anonymous hugs from behind, pokes in the ribs, tickles under my chin. And, always, “Do you know who I am? Guess who?”

I’ve been thinking about this lately because it has happened a few times in the last weeks. As an adult, I am still being asked to play “guess who” and frankly, I think it’s ridiculous. There’s a twist, though: this has also morphed into, “guess where?” “Let’s see if you remember where this is,” someone will say. “Let’s test you and see if you can do this.”

I have a lot to say about these “tests” of my memory and ability to be Blind Superperson. Mostly, though, I just want to say, “Stop it. Like, immediately.” This is not fun any more. I am not a child any more. Poking and prodding and tickling isn’t cute any more.

I’ve been trying to think about WHY it seems acceptable to some sighted people to engage this way with blind people. I’ve come up with one theory, that it’s a way to communicate for people who are awkward around blindness. They can’t make eye contact with me, or smile with recognition, and they also can’t think much past Blind and Sighted, so they try to find humor and connection in those feelings of insecurity by putting me through a “test.” Instead of just asking a question: “How would you like me to let you know who I am? Should I remind you of my name?” Specific asking takes away the guesswork; the sighted person doesn’t have to assume the other person knows who they are, and also doesn’t have to keep identifying themselves over and over if it’s unnecessary and just annoying.

Yet, outright asking seems to be one of the hardest things to do. Outright asking is acknowledging difference, having to talk about it openly, and admitting that you don’t know what the best way forward should be. That’s a vulnerable place to be in, I suppose, and for me, it explains why even some adults revert to the elementary school “guess who” when they are reacquainted with me. I’d much rather just be told and not tested.

The other part of “guess who”, of course, is the being touched. I don’t mind being touched by people who know me well, and I don’t even mind being touched by strangers too much. What I do mind is the assumption that because I am blind and that, in some people’s minds, makes me vulnerable, it is ok to touch me without consent. When someone comes out of the blue and hugs or pokes or tickles me, it could be a complete stranger or someone I know, but I have no way of knowing which. Since I’ve become a city dweller and am on the streets every day, I’m much more wary of this than I was as a kid or a teenager. So, I’d rather not be touched without knowing who is touching me.

Of course, as with everything, different blind people have different feelings on this. But these are mine and, as ever, only mine. I’d love to hope that “guess who” will soon be part of a bygone era of my life.

Last summer, I deactivated my Facebook account for my 30th birthday. It was the best. It had gotten to a point where social media was way too stressful and anxiety-inducing and PRECIOUS for me. I was tired of looking at people’s curated, (and I suspect sometimes fake), lives. It wasn’t about anyone in particular at all. I love my friends and family. It was about minimizing anxiety, and my own sense of “failing” at the life I felt was expected of me, and it was about practicing authenticity. (It’s always a practice.)

Now, I’m back on Facebook for a few important reasons, for the moment. I reserve the right to quit again, as we all do. But I’m still looking for authenticity, for vulnerability and honesty, and it’s occurred to me that I might as well start with me.

I’ve noticed a pattern in myself, where the more depressed I am, the more I’m looking for validation, posting on Facebook like everything is amazing. Of course, this is not always the case. You shouldn’t assume that if I’m posting a lot, I’m doing so while listening to Tori Amos and crying into my teacup. But, it is something that I do: when my outside life feels overwhelming, I’m on the Internet, wanting superfluous talk and distraction. Sometimes, I’m posting about my big plans for the future, my cooking projects, my feminist and activist ideals. Blahblahblah. And other timestimes, it’s totally legitimate and I really am making a three-layer carrot cake with extra-creamy cream cheese frosting and loving every minute of it. But sometimes, it’s teatime with Tori.

I’ve decided that this is probably ok, and that I don’t need to stress over it too much, especially when I’m already stressed. But it does beg the question: what can I do to intentionally be more authentic? And where? And how? And my blog seems like the obvious place, the space where I can be real with you, and you can read it, or not. You get to decide.

This post on authenticity was also inspired by my blog post last week. It was not a happy post in the slightest, and I know it’s natural to worry, and worrying is ok. But the post was less about wanting to cause worry and more about practicing that authenticity, vulnerability, and honesty. I can’t make carrot cake all the time. It’s been a very challenging couple of months for me. I’d like to say it’s getting better, but I’d also like to not fake it, so it’s really not getting better. I have good days and bad days and I’m trying to be ok with the fact that, at least for a little while longer, things are just gonna be hard. I hope you’ll stick with me through my possibly sad, but striving for authentic posts, but it’s ok if they’re too much: too personal, too sad, too bleak. I get it.

And thank you, as always, for being here. Thank you for reading these words, no matter how uncomfortable they might be.

At some point you get some crazy idea to move away
look for a new home, look for a new life
laugh and eat and breathe somewhere else
because dammit, you just want to.
Because it’s an adventure, because it’s time
And then when you do, life goes on back there without you
the place you left
and even though you want to return, it doesn’t stop to wait for you.
No, it’s too busy with new things
you’re old, you’ve been there before, you’ve loved there before, you’ve failed there before.
That place moves on, even though you can’t
even though you want to try to take it back
because you changed your mind you made a mistake you didn’t mean to
you just want to be held
not to go to bed alone
not to lie awake alone
but it’s just not the same back there and it will never be
Life changes, even if you haven’t.
Or even if you have, in the worst possible ways.

Tonight, I ran out to get my mail and on my way back, I met a man I didn’t know, with a southern accent and a firm handshake, who said he’d been living in 102 since November. I felt mildly guilty, as I usually do, that I had no idea he had moved in, that I wish I knew my neighbors more, enough to ask them to bring in my mail or water my plants when I’m gone, enough that they would ask me the same. I was about to let the guilt go and move on, when the man, who introduced himself as Paul, said he was the brother of David, a neighbor I had gotten to know over the past year.

David had Parkinson’s disease and sometimes had seizures. On his better days, he liked to hang out in the hallway with his door open, or hang around the back door, saying hello to everyone who walked by, again and again, even if he said it to the same person every five minutes. Once, I’d come upon him when he was upset and crying, and we talked about what it was like to be different, to be “people with disabilities” living in the world, and I found comfort in our conversation. I wrote an essay about it. It’d been months since I’d seen David anywhere, and had hoped fervently that he’d gone home to D.C., or maybe he’d moved into assisted living or something. Every once in a while, I thought I should ask my landlord about him, but I hadn’t seen my landlord around lately either.

I’m so glad I ran into Paul, and that he didn’t let me duck into my apartment without talking to him. (I tried.) He told me that David had died in January, after being in the hospital for a few months. Paul had moved into tie up David’s “affairs”, and is leaving to go back to Virginia tomorrow. I’m so glad I hadn’t missed him.

Paul also told me that my landlord, Marvin, had also died in February. I had said, “I wanted to ask Marvin about David, you know, since I hadn’t seen him, but I haven’t seen Marvin lately either.” I remember I kind of smiled, like, you know Marvin, he’s everywhere. And Paul said, “Marvin died too.”

I couldn’t get my head around it, these two neighbors, who lived across the hall from one another, one landlord, one tenant, both the life of the building, the only two I knew and who consistently greeted me with warmth, both dying within a month of each other. So much loss, so easy for me, as I immediately did, to feel guilty about not knowing, to think, “I wish I would’ve known, I could have helped maybe.” But what could I have done? I wished I had been friendlier, enough that I would have met Paul sooner, or sent my condolences to Marvin’s wife, or something. My brain, as it does, worked hard in those moments with Paul to figure out what I could DO. How could I make my past apathy better?

But I couldn’t, and I can’t, and it’s not about me.

Paul asked me to share memories of David. I struggled with whether to tell him about the essay I’d written, how I was shopping it around, trying to get someone to publish it. I wasn’t sure he’d like that I’d written about his brother. I decided to just tell Paul how welcoming David had been when I moved in, have: he was the friendliest, steadiest person in this building, how in my moments of homesickness, I appreciated it so much.

Paul said he was sorry to be the barer of doubly bad news. I felt wrenched that he was apologizing to me when his brother had died. He said he would tape a piece of paper to my door with information about David’s obituary, if I’d like to read it. I said I would, didn’t bother to tell him I couldn’t read the paper. I asked him if I could give him a hug, and remembered that after our conversation where I’d found him crying, I’d hugged David too. He seemed so thin. Paul was more wirey than thin, but strong, intent on holding me up, even though he didn’t have to, even though I should have been doing that for him.

Tonight, I’m winging a thread of hope to the universe, that Paul will have a long, happy life. And that he knows that David will always be a fixture in my memories of this place and of Seattle.

I was recently doing some “research for my thesis” about Daniel Kish, the blind guy who uses echolocation to get around instead of a cane or guide dog. I say “research” in quotes mainly because it makes me feel pretentious and academic in a way that it has become clear I am not and am not likely to be. “Research for my thesis” implies that my thesis has a formal research component, when what it actually means is that I spend lots of hours Googling stuff I’m not even sure I’ll use, and skittering down various information rabbit holes. And my thesis is no more defined than it was last month or last year. But I digress.

So, spoiler alert, I find Daniel Kish and his echolocation perplexing at best and annoying at worst, but that’s not the point here. The point is that as I was reading about and listening to interviews with him, he mentioned that he had gone to elementary school with another blind kid. Unlike Daniel, the other blind kid (TOBK) was more or less helpless: he ran into walls, people carried his books for him, and he sat out in gym class. Daniel didn’t run into walls, carried his own books, and killed it in gym class. Or at least, climbed a bunch of trees and rode his bike around the neighborhood.

Despite their differences, Daniel said, eventually people started lumping them together. They were “the blind kids.” They got called each other’s names and eventually got the same treatment, which defaulted to over-helping, because, well, they were the blind kids. And as annoyed as I was by some of Daniel’s opinions, I was completely on board with this situation being absolutely infuriating.

I haven’t been around many blind people for large parts of my life, because I was “mainstreamed” from preschool and was the only blind kid in my class. But I have noticed that every time I’m around other blind people, we become an indecipherable blob of white canes and guide dogs and robotic screenreaders.

This has become clear to me most recently working with other blind people. I worked with people with varying assistance requirements. Some needed a person to sit with them the whole time they were operating a computer. Some needed an escort to the bus stop. It’s not really my place to judge whether they “should” have been able to do these things without assistance, but it did start to irritate me when my sighted coworkers defaulted to trying to help me do the same things as some of the others. It’s like they forgot we were all individuals, and assumed we all needed as much help as the most helpless.

I admit to being someone who stubbornly refuses help, at times to my own detriment. My stock response to this acknowledgement is: “I’m working on it”, which I am, kind of. I bristle at the thought of having someone looking over my shoulder while I’m doing anything on my computer. If I have someone walk me to the bus stop, my goal is to pay rabid attention so I can do it myself next time. I mostly just want to be left alone, and if I need help, I’ll ask.

But the assumption that blind people need help all the time is pervasive. A few months ago, I was crossing a busy street in Downtown Seattle. In the middle of the street, while I’m concentrating on not getting run over, a woman who was also crossing says out of the blue, “Do you need help?” I had made it to the middle of the street without help. I was walking upright, in a straight line, presumably not giving off an air of desperation. But she asked anyway. I said, “No, I don’t.” She said, “Ok, well, I’m getting my degree in care-giving, so I have to ask.” To which all I can say is: no. No you don’t.

Sure, ask if the situation seems dire. Ask if someone is walking around in circles, looking super lost. Ask, if you can, out of a sense of genuine compassion, not to feed your ego or give you the opportunity to talk about your education. I’d be willing to bet most people in the middle of the street really don’t care about that, and would much rather just get to the other side in peace.