Category: Real Life

I’m in Vermont right now working through my ten-day residency. It’s exciting to be back around writers again, and take in all the things my brain can hold. We have long, intense days, beginning early and lasting until 9 or 10 at night. My schedule has become my lifeline. It’s all I can do to try to eat when I’m hungry and sleep when I’m tired, and I am tired all the time. And this is how residency is, and mostly, it’s great.
The not-great part is that on top of all my other learning, I’m learning to navigate a new campus. And, because of that, I am way more dependent on everyone than I like to be. And because I am way more dependent on everyone, I’ve become somewhat one-dimensional: I’m the one who’s blind and needs help. People all the time, having nothing but good intentions, approach me and ask if I need help. Sometimes I do, and it’s appreciated, but there are many times when I yearn to do it myself, even if it takes a few extra minutes, or when I don’t need help at all.
It’s hard to explain to those who don’t get the “do you need help?” question constantly, but being asked that several times a day is exhausting. You play a little game each time you are asked: what should I say? Do I say yes, just for the comradery and to have someone to talk to? Do I say no because I want to show my independence? If I say no this time, will they not ask next time when I might actually need help? Have they helped me before? In fact, have they already helped me a bunch today and really shouldn’t be expected to help me again?
When I stop to think about the conversations I’ve had in the last few days, I am astounded at how many of them revolve around what I am doing or not doing, and whether I need help doing it. I’ve heard, “what do you need?” so many times when I’m idling to look at my notes or my schedule or just to take everything in. Most of the time, I don’t know what I need, or it’s a long list that most people can’t help me with, and many times I don’t need anything. Being asked over and over continually puts me on the spot, in a fight or flight stance, even though the intentions behind the asking are nothing but good.
Today, I had someone yell across campus to me: “Do you know you turned the wrong way?” This person didn’t have any idea where I was going. So how did they know I was going the wrong way? I called back that I was fine, then wondered if they continued to watch me as I navigated to where I wanted to be. When I refuse help and the person doesn’t immediately withdraw, I wonder if they are watching me, thinking how much easier it would be if they helped, how much faster and more efficient. I know I have done this before, too. But sometimes, most times, I want the agency to take longer, to do it my way that’s maybe, probably, not your way. When you’re in my situation, you can certainly do it your way.
What I miss most in these ten days is just being able to get away. I want to walk uptown by myself to the co-op, or the crepe place I went to last fall. I want to find a café and listen to people around me, not talk to anyone in my program. If I want to leave, though, I have to find someone to help, and coordinate schedules, and feel obligated, somehow, to return the favor. I hate that society has ingrained this tit-for-tat idea into me. I hate how hard it is for me to accept gracefully, without worrying about the payback.
I’d ask folks who interact with people with disabilities, or want to help those who might need it, to consider the circumstances before offering help. Don’t just offer willy-nilly, and do be prepared to be told no, thank you. Try not to bring your ego in.
I think what I want most right now in the world is to have a genuine conversation where my blindness or my dog are never mentioned. Or, to take a walk by myself away from the campus and away from everyone, just for a few hours of receiving no help at all.

Breaking the Cycle

I haven’t been writing.

Back in May, I finished my third semester of grad school and in August, NILA closed its doors.  I moved back to Minnesota.  In September, I attended a writing conference in northern California and felt slightly renewed to write, or, I told myself I felt renewed.  But I came home and didn’t write.  Keeping this blog has been a struggle, and it’s the only real writing I’ve done in months.  Instead, I’ve spent hours laying on the floor with my dog, made an epic ton of jam, paced, cried, and tried in vain to get a job so I wouldn’t have to think about writing. I’ve felt like a failure.

There is a dam of words inside me, the desire to make sense of this insane, sad, difficult year.  Part of me is afraid that if I start writing I will never stop, or I will cry until I can’t breathe, or I will realize just how hopeless writing is or how much of a fraud I am.  Imposter syndrome is eye rollingly dull, but it doesn’t mean it doesn’t exist and isn’t pervasive.

I had wanted to spend this holiday break writing, but I didn’t, for all the same reasons I listed above.  My advisor from NILA always said, “If you can’t write, read”, so I have been reading instead, and when I haven’t been reading I have been singing, and when I haven’t been singing I have been watching slam poets on YouTube and trying to let go of everything except words.  I hope it is working.

On Wednesday, I start residency at my new grad school in Vermont.  I finally wrote to my former instructors at NILA to tell them I’d gotten in and was starting soon.  I chided myself for not doing it sooner; I’d put it off for months because it felt like closing the last peephole window on NILA, and on the community and challenge and solace I found there.  And because I knew that one of my instructors, in his recommendation letter for the school in Vermont, called my writing “fearless” and to be honest, I am fucking terrified.  I always wish people knew how afraid I am.  The only thing I have going for me is that I’m afraid, but I do it anyway.

Fear or not, I am doing this thing, I am going to write again, (thank you, grad school deadlines), I am going to get my MFA, I am going to meet and connect with writers again.  I am hungry for it, and curious, and hopeful, because I don’t know how else to be.

What are you hopeful for in the New Year? What do you want? What are you afraid of but determined to do anyway?

I’ve been bingeing on Metric lately, so I’ll leave you with some.  I acutely feel the urgency here, and understand the wanting.  I want it all too. Happy New Year, everyone.

“A blade of grass

a grain of sand

the moonlit sea

to hold your hand

I want it all

I want it all

I want it all

I want it all.”

 

Metric: The Shade

Today I walked through my old neighborhood
Under the bridge, down the big broad hill
my feet knew the path
my dog knew it too, trotting beside me, trying to pull towards our old home
we’d worked so hard to learn these streets
we still knew them like we deserved to.

Cheeks rosy cold, fingertips curled into palms into pockets
I found myself holding my breath
trying to name the feeling rushing in my body
the quiet whish-whish of traffic
the night clean and clear.

“I’m thinking about moving back to Seattle,” I told her earlier.
In a tumble of confession, of shame but wanting no shame
I spoke the thing aloud
where it had so far only been heard in my head
and in the ears of my Beloved when I felt the most sad.

I crossed at the light with strangers guiding us
and hopped a bus to Ballard
just so I could be alone a little longer.

Last week, I spent Thanksgiving at my parents’ house in Sioux City, Iowa, my hometown. They are moving at the end of this month. I don’t know when, if, I will be back in Sioux City. I don’t have a lot of memories of Sioux City as a town; it was the place I grew up, but I was tethered to my home and my school and my gazillions of activities. Most of my friends no longer live there. I never “got” the Sioux City food scene: hot dogs, lengua tacos, etc. And there were hardly any coffee shops when I left at 19 and moved to the Twin Cities, and definitely no Thai food.

All to say, Sioux City doesn’t produce nostalgia, but my parents’ old house on Orleans Avenue does. We moved there when I was 13. Change-averse as I was then, I was not exactly pleased. I also remember feeling like my parents were spending too much money on the house, which I find hilarious now. As if I had any clue.

We moved in the spring, close to summer break, and I remember spending most of that first summer writing my “novels” on the Brailler in my bedroom. I sat on the wooden floor to type, and my mom would comment on how loud and exuberant my typing was from where she puttered around downstairs. There was a cupboard hanging on the wall in my room when we moved in, which I thought was amazing for some reason. I liked the secretiveness of xI kept all my finished writing in that cupboard, stacks of typed Braille pages which are now likely in the attic. Around that time, I won a “contest” where the prize was a brand new Brailler of my very own: (up to that point, I’d borrowed school-provided ones). I won because I told the person who phone interviewed me that I wanted to be a writer, and wrote “novels” using my borrowed Braillers. Now, that Brailler’s keys are lumbering and sticky, and the back space doesn’t back space. It’s almost as if I typed it to death.

Over Thanksgiving, my dad talked about that first summer in our house, mentioning that I’d sat on the porch swing into December because the weather was so warm. I don’t remember that year specifically, but I do remember a few other years when the summer stretched well past August. I did so much thinking, writing, and daydreaming on that porch. I sat with friends late into the night; we figured out our whole lives. We were pretty wrong about everything.

During high school summers, my friends and I would sleep outside in the backyard, with the bright city lights and the loud traffic and intermittent humming air conditioners. In my mind, there were dozens of these sleepovers, with none of us actually sleeping much. In reality, there were probably only 4 or 5, or fewer. During one such sleepover before my senior year, lying on a blanket in the circle of my friends, I came out as a lesbian. I had just turned 17. I felt buffered from everything in that circle except bracing love.

The stairs in that house always creaked. For many years, we had wood floors and you couldn’t hide from anyone if stairs were involved. We believed that my dad always made extra creaky stair noise in the summer when we all slept in and he had to get up to go to work. I’m sure he will deny this, but it was real, people. The squeaks don’t lie.

I always liked coming back to the house on breaks in college. I’d sit in one of the recliners and read all winter break, and though I didn’t go home for the summers once I moved to Minneapolis, I still missed the porch swing and my mom making iced tea and my dad whistling as he got the grill ready. Certainly, physical homes are just that; between people are where real, lasting homes are built and added to and sustained. But I will so miss that physical space that embodies where I come from.

I’m not sure why I’m so sentimental. I have to confess that the holidays are hard for me. I struggle with societal consumerism, dark cloudy days, some combination of internal and external pressure to pretend I’m happy all the time. I see how the holidays are devastatingly hard on many people, especially those who are sick, lost, vulnerable, alone.

I have also been feeling a lack of attention to intention in my own life for the past several months. I have been living precariously, feeling in a near constant state of reaction and anxiety and volatility. Many things feel outside my control, and that has eaten away at my normal desire to be intentional with people and with myself and my decisions. I want to use the holidays, the hunkering down of winter, to recalibrate my intentions. I have a few ideas of how I want to do this: things I want to do to strengthen my friendships and relationships, physical exercises to be fully with my body in a given space, writing prompts and projects to shed light on some critical choices I need to make. What do all of you do to stay mindful? Or, what would you like to do better?

I’m wishing you all a peaceful December. Be gentle with yourselves and with one another.

In the best world, I would have all the words for this. In this world, I can only approximate, which is why I’d like to say from the outset that I have no idea what it is like to be a person of color in this not-at-all-the-best world today. I have only knowledge and pitiful understanding of what black and brown people face every single second of every single day from a society who collectively thinks it is so much better than it used to be, or, worse, who insists that racism no longer exists.

That said, I am a disabled person. And I can tell you, as a disabled person, I am hella angry, and if my anger is anything at all like the anger of folks doing racial activism in this country, I know it and I feel it, at least a little bit.

If there was a movement for me as a disabled person to stop traffic on a freeway, to yell and scream and link arms and create a human wall of passion and rage, I would be there. That’s why, when people say to me that they don’t understand why everyone is so angry and has such a bad attitude, I just think, I know why. I’m angry like them; I know how it is, a little bit.

Here are some reasons I am angry:
1. I am 31 and have never had a steady job that pays me enough to live independently and with relative ease. You can say this is due to the economy, but it is mostly due to people not knowing how to work with a blind person, and not believing she can be an asset rather than a hindrance.
2. Because of this, I am 31 and have also never had reliable, consistent health insurance. It’s a good thing my blindness doesn’t actually present any day-to-day medical challenges.
3. Every time I leave my house, I have to decide if I’m willing to handle nosy questions, pushy offers of “help”, or harassment directly related to my presenting as a blind woman. If I want to live in the world that day, I have to make peace with the fact that this could happen at any time I am outside my house. If I just can’t deal that day, I stay home and a day of productivity is lost.
4. No one, on a bus or a sidewalk or in any building in any situation, has ever tried to intervene on my behalf when I am being catcalled, questioned, or harassed. People walk by. I imagine they either stare or look away quickly. If I want allies, I defend myself. That usually does not help.
5. Because of a world that is in no way created for disabled people, it takes me much longer to do simple tasks. This usually fits the narrative that blind people can’t do anything, so the narrative is perpetuated. Very few think about the problem as being about the rest of the world, not the blind individual.

These things are just the tip of why I am angry, and why I am more angry now than I was last year, or five years ago, and why I fight to keep my anger in check way more often than I’d like. This is why when I see people with immense privilege refusing to acknowledge that, I want to scream and stop traffic and howl with the injustice.

And that is why, sometimes, I am not very kind to people with that privilege, even if they are the people I love the most. I am not proud of this. Sometimes, my pain and frustration is such that I can’t separate the “privileged people who get it” from the “whole ignorant and privileged society.” It all mashes together into people that will just never, ever truly understand. The people I love the most get caught in the fire. No one is spared, because ultimately, privileged people, even those who get it, benefit from this system that keeps disabled people from the most basic livelihood.

As I said, I am not at all proud of my reactions, my pain, my anger, the fact that it drags down those I love. I ache for the hurt I’ve caused. I spend as much time yelling at myself for being an asshole as I do being angry, if not more. I am so, so sorry. I love you. Thank you for sticking with me. Please forgive me.

The terrible part, the absolute worst part, is that I can’t guarantee it won’t happen again. I can only hope for, if not the best world, a better one.

Day 3, and this is where I am.
I feel more and more afraid and unable to cope with being alone. I crave community and am struggling with where to find it.
I am worried about living as a poor person without a lot of choices or financial power. Without that power, I can not make changes, and with the uncertainty of the upcoming administration, I feel this very acutely. I feel a growing sense of dread that this will be the rest of my life, tinged with fear of just getting by.
I am afraid for the vulnerable people I know, and the vulnerable people who have decided to not go on after the outcome of Tuesday night. They are out there. I know of at least two personally.
There are moments where I think: I MUST stop this. I must get up. I must walk, exercise, eat better, make myself stronger. I am going to need my strength. Others will need my strength.
I am still, mostly, content to listen and to put forth positivity, rather than yelling at invisible Trump supporters, or shaming them, or screaming at people for not voting. That particular use of my voice is completely unproductive, and does not make me feel better.
I am feeling scattered in my writing and in what I say, and I think, maybe, hopefully, I just need more time. We just need more time, and though we don’t have much time, we have a little. And perhaps, we who need it should take it.
How are you? I want to hear from you. I want to hear voices from my community.

Things have been a bit heavy around the blog lately. I feel heavy, and therefore my writing is heavy, and therefore my writing is more scarce than I’d like it to be. Tonight, I thought I’d attempt to sit with some bright spots and quantify them for a little change, instead of concentrating on so much dark.

My favorite restaurant right now in the Twin Cities is Nightingale, and you can walk there from my house in a brisk 15 minutes. There are lots of small plates, my favorite being the pickle plate. But, they also have fantastic bruschetta, grilled bread with seasonal toppings like squash and kale and mushrooms, cut in half for sharing. Their olives are ridiculous, (that is a technical foodie writer term). Their flavors often change, but right now they are smoked in olive oil, then infused with orange and lavender. Smoke and lavender are ethereal and mysterious, and two things I will almost always go for separately, and together I could eat them all day. I’ve gotten to go to Nightingale twice in the past week.

Today, my friend Kyla sent me an MP-3 file of a song with words about witch hazel, “bright yellow flowers blooming in the middle of winter time.” It was sung by a group and there was harmony, and one singer had an uncannily similar voice to another friend I’ve neglected for far too long, and then neglected longer because I felt bad for neglecting. I need to get back into group singing. I miss that connection with strangers. And, I need to reconnect with my friend. And to remember that flowers still bloom in winter.

A month or so ago, Arlie, who I know just loves being mentioned in this blog, compiled a zip file of Pacific Northwest song bird calls. Many of them are the same as Midwest song birds, or at least Minnesota song birds, since we are fortunate enough to be near lots of water. I finally got around to unzipping and listening today.

I have an incredibly obnoxious, drippy cold. I don’t say drippy hyperbolically, either. I was supposed to make sushi and hang out with a new friend tonight, and had to cancel because I was concerned about my cold contaminating everyone else’s meal. I felt terrible for flaking out, especially in the tentative early days of a new friendship, but just discovered that she emailed me back with understanding and compassion, and offered to drop off some sushi anyway.

Someone extremely important to me told me very gently the other day to not think of myself as unlovable or unworthy of love based on not having my life at all together. They know who they are. Thank you.

People are so kind, and the world right now seems so fragile, and I must hold onto that kindness, extend it, and return it, over and over. It is the way I live the most in the present, the way I live best.

I am afraid.

I’ve grown up being told by those who don’t know me well how brave I am. I would like to throw water all over that idea right here and right now. I am afraid. I am uneasy, I am unsettled, I am restless, I am hanging on to shreds of sanity, I am afraid, I am afraid.

People on social media are fond of bringing up Trump’s fear-mongering tactics as one reason he has any supporters left at this point. The implication is that people are afraid of differences: immigrants, people of different religions, people with disabilities, queer folks. They are afraid of things like taxes, free education, universal health care. They are so afraid of being jerked out of their comfortable lives, and of having to look at something differently and change and adjust according to those differences. People who don’t want to deal with those things are afraid.

I’m afraid too.

I am afraid of a world where it is even more impossible for me to find a job without having my qualifications questioned because I am blind. I am afraid of living in a world where the current federal administration normalizes and even approves of harassment of minorities. Right now, I have to walk down the street while blind, while queer, while presenting as a woman, while vulnerable, while shaking, while crying, while minding my own business, while not asking for it, while not having a car or the opportunity to hide in one, while not having financial stability, while just trying to be a better person today than I was yesterday. I am afraid of a world where this will be even harder than it is now.

I am afraid of a world where we will not go far enough to ensure good quality of life for everyone. And although it’s no secret who I will vote for, I am afraid she will not do enough. I am afraid that the smugness and righteousness I see all over Facebook, people’s moral highground, the cockiness and certainty everyone has about the outcome of this is misplaced. No one thought we would be here, and here we are. How can we possibly assume we know what will happen, let alone that it will be what we want?

I wager that the people who are so confident are those who live well-off lives, who do not live in fear for their safety or livelihood, who don’t have their life dependent on this fight. It’s easy to be smug when you’re comfortable. It’s easy to throw around stats when you own your home and are warm and well-fed and cuddled next to the “success” that America approves of. It’s easy to feel like you’re 100 percent right when you’re not afraid.

I am afraid.

How about a good, old-fashioned rant today.

I’ve been thinking a lot lately about accommodations, and how we accommodate people with disabilities, (or don’t). The ADA has given us a term for this, “reasonable accommodations.” Everybody says these words like we all know what they are, but it’s really just an easy buzz wordy way to make black and white something that, by its very nature, is always going to be gray.

I’d like to talk, specifically, about the reactions of people who hear about the “reasonable accommodations” someone with a disability might receive. When, on the rare, rare occasion that I’m given some printed text in an alternate format, whether it’s Braille or a Word document or an audio file, I’m thankful for the consideration that has been given to me and my situation. I will usually thank the person responsible, and mean it sincerely.

However, if someone else finds out about the alternate format, they often will break into a gush about how fantastic that is, and how nice they were to provide an accommodation, etc etc. And, don’t get me wrong, it is incredibly thoughtful, and I appreciate that, but it is only particularly noteworthy because of how rarely it happens.

I could count on a few fingers the times I have not had to ask and advocate for my own accommodations. Most people have know idea what accommodations are, and how to define “reasonable.” I tend to say that, for a blind person, a reasonable accommodation is whatever is comparable to what a sighted person receives in a given situation. This is most important, for me, where text is concerned. If someone sighted has access to identifying text, I should too. It is not “nice” for someone to do so. It is the law. It’s not “nice” when it’s done for sighted people, either, and it would be silly for someone to say so.

Since most of the reasonable accommodation giving centers around employment, and whether or not a requested accommodation is, indeed, reasonable, I’ll mention, too, that I’m sick of the way we talk about people with disabilities finding and sustaining work. Often when I have a job, I feel enormous pressure to be constantly positive about it, because someone was so “nice” and “took the risk” of hiring me. And often, an employer will expect so little from a blind employee, and be all too quick to say, “Well, it just wasn’t working out. They just couldn’t perform the essential functions of the job.” (In case you were wondering, “essential functions” is another ADA phrase which employers love and I loathe.

Blind people, overwhelmingly, are not unable to perform the “essential functions” because they don’t have the skills to do the work. They are unable to perform the functions because they are not given adequate, reasonable accommodations. Can you imagine if a sighted person didn’t have something as simple as an agenda for a team meeting in a format that they could read? What if a whole population of sighted people were continually not given agendas? When someone comes to me and apologizes for not getting printed materials to me in a manner in which I can read them, my expected response is supposed to be: “Oh it’s ok. I know you’re busy. … Yes don’t worry, you have a lot to do.” Certainly, everyone has a lot to do. But what if blind people had permission to say something like, “I understand you’re busy, but not having the same materials as everyone else compromises my job performance and my job security in turn. How can I work with you to ensure I get the materials in advance next time? And how can we work together to get me the materials for today as soon as possible?”

I’m sure many of you, looking at the above, diplomatic statements, are thinking: “Say it! You go girl!” And certainly, I wish we as blind people could all feel empowered and confident enough to say these things. But even if we’re not told by individuals, we’re told by society that we should simply be grateful to have a job. If we’re not making adequate money, or don’t have full materials, we should just be grateful someone took the risk when our skills are inferior to others. We need a shift far greater than “reasonable accommodations”, which only sounds good to a certain point. It needs to be practiced, to be demanded, and to be honored without repercussions. Of course, there will be blind people (just like sighted people), who will turn out not to have sufficient skills to do a particular job. They may have to seek other employment. But blind people should be given everything comparable to what a sighted person receives, so that there will be no question about why it didn’t work out.

This week, you are traveling east, back to a place you left for hopes of a better one, which, whether you found it or not, (and you’re not sure, but you think so), you are leaving anyway. Your stoicism looks good except for the cracks, the tremble in your chin, and the fact that you have trouble swallowing. You say, “See you later!” instead of “good-bye”, and hope noone knows your sadness.

The states between the two stretch wide and press close, somehow at the same time. You want everything: to get there, to go back, to have the drive go on forever so you never have to choose. Miles of mountains and no water, and you try to picture how it would be to live here. To raise a family in a state that makes you feel so small.

And then you arrive, and you’re in another new apartment, trying to find some joy, and if not joy, comfort, and if not comfort, resignation. Instead, you feel a sense of loss, of the person you were when you left, only a year and a half ago. Maybe now you are better, or at least maybe now you know more, but you are surprised to miss who you were, or who you think you were, and you are dismayed that you can’t find your old self again in the streets and the people and the places that dared continue in your absence.

You miss the sound of the boats that floats to you on the breeze. You miss the distant seagulls, the mist, the blessedly cool cradle of night. How the city grows wild, how you always wondered idly if someday no one would be able to hold back the blackberry brambles and the mulch and the heavy-hanging branches. You miss the idea of the closeness of the coast, you miss that “going to the beach” actually might mean a beach, sand and bracing salty water and a tide. And not a lake.

But you’re here now. Comfort or not, you’re here now. You dig through the boxes for the things that will make it feel like home, the candles and the soft blankets and the teakettle and the spices.

Everyone says, “Give it time.” You wonder how much time you should give it. You are often impatient. You often want things you can’t have, so you pretend you don’t want them, because it’s easier that way. Or that’s what you’ve been telling yourself, anyway.

Maybe, hopefully, you will find your feet here again. The worst that could happen is you don’t, and so you’ll just keep moving. You try to remind yourself that this won’t mean you’ve failed, that you’re just living, the best way you know how.

As much as you thrive on discomfort, on the high, on the adrenaline of new challenges, this seems like an old challenge you know all too well. So you do what you’ve done, what you know, what you must: you pour the tea. You pull the chair to the table. You picture your shadow, there with you, offering comfort, keeping you from being alone. You settle in for a long night.