I just got back from an appt with A. We did something a little differently this week. We used trigger-point therapy (on my neck / back) and energy work to release some of my pain (physical) and fear / negativity at the same time. The trigger point technique is a good match for this idea of release because it gives me something to focus on and then let go. When we were done and I came to all the way I thought to myself, "Huh. I really feel different today." I see A pretty much every week and many times, I leave feeling rearranged but still hurting, if that makes any sense. Today there was a marked difference in my thoughts as I left the yoga studio. The studio exits onto a very un-yoga-like scene. The south side flats are (is?) simply bustling with drunks and brimming with gutter punks. I often feel my chill vibe evaporate before I get half a block to the corner. Today though I was feeling unusually serene. Every time I tapped my cane I thought in my head I exist you exist I exist you exist and it was all very.
I think that put me in the headspace to receive the following message. After A, I stopped by Dairy Queen and had one of their evil-on-so-many-levels Confetti Cake Blizzards. These are Satan's own crack and it's good they're only around for a month. Whilst eating, I surf the internet on my phone. And recently I've been seeking out the pages / blogs /whathaveyou of other poets with disabilities because... if I can't have an actual in-the-flesh mentor, I'll read a lot and see what the experiences of others are. I came upon this column by Ona Gritz on the Literary Mama website. It's called "Guardian Angels of the Staircase." Gritz has CP. She live in a walk-up with her husband and teenage son. The column begins when Gritz is in the supermarket and she does the thing that everyone does who commutes not-by-car. Essentially told herself as she was shopping I'm totally keeping these bags light enough so I can carry them home okay and then surprise! Exceedingly heavy bags. She gets to her building and is sizing up the daunting task of taking all those grocery bags up four flights of stairs when she sees people she knows coming down the stairs.
"Do you need help?" the woman asked. My first instinct was to refuse politely and struggle up the stairs. After all, they'd just come down five flights and were on their way out. But then I thought about all the times Dan answered that same question with an enthusiastic, That would be great! Being blind, he'd never be able to live his rich, busy life as both a poet and an access technology consultant without accepting help now and then. As a physically disabled woman living with an elevator that's been out of service until further notice for the past six weeks, I've come to realize the same is true of me.
I was like wha----? She's so .... positive. About the receiving of help. She takes the woman's help. The only reason she considers not taking it is because she feels too polite. Need I remind my loyal readers, that whenever people ask me if I need help, my first thought is wtf bitches, do you think I'm incompetent?
After relating another incident where a neighbor helps her carry heavy stuff up their stairs, she ends that anecdote with :
"It wasn't all that heavy," he shrugged, flushing, making me realize he preferred not to be recognized for what he'd done. Was it shyness? Maybe in part. But more than that, he'd simply helped me because he could and because I needed it. Neither for acknowledgment nor for praise. One perk of disability is that I get to see the best in people.
One. Perk. Of disability. Is that she gets. To see. The. Best. In people. I was reading and in my head going ?! ?! ?! I was thinking about my own experiences and, well, how different they were. Not that I have had only negative experiences, but that it's been ... rocky. Mixed. I would never make the statement that having a disability means I get to see the best in people. And I thought about what A has told me before, how people's reactions mirror my own energy and how I can "show" them how I want to be treated by projecting an aura of comfortability with myself. Which I kind of get and kind of don't. Part of me is like, yes, that is true. And the other, larger part of me is like, it is not my motherfucking responsibility to show people how they should treat me. Especially strangers.
You can see I have some anger issues here. Like an entire landfill of them. Honestly, the only person I've ever truly felt comfortable asking for help from is Mike, and that comes with its residual feeling of guilt, because I worry that I rely on him too much.
It's a short column. Gritz ends it with :
The medieval Jewish philosopher Maimonides considered anonymous giving one of the highest acts -- a commandment filled for its own sake. The one form of giving he placed above it is where the altruist finds a way to communicate that she or he and the person in need remain equals. I've definitely needed more help since the day the elevator went bust. Often, it's my family who jumps in. [. . . . ] But just as often, it's been my neighbors, many of whom I hardly know. Yet not once have I been made to feel like that poor crippled single mom on the fourth floor. Life's been a little harder for all of us in these long weeks of living in a walk-up. We're a little wearier for it but, on the upside, maybe a little thinner too. Most of all, we're in it together and that's never a bad thing.
I love this idea of "where the altruist finds a way to communicate that she or he and the person in need remain equals." I definitely feel shitty and "crippled" asking for help. Or even contemplating asking for help. Part of that may come from the other person, but part of that is coming from me. I don't know how to separate the two out, so that I can work on the me part. There's a whole lot of anger tangling these two negative aspects of helping. I will try and enumerate.
1) Most of the time, the question "Do you need help doing X?" angers me when it's a) from a stranger and b) quite clear to me (and I feel should be clear to the other person), that I don't need it.
2) An example of this is, no man is catcalling at me anymore now that I'm using my cane, but a slightly higher class of man (you can read that as, less drunk) comes up to me and asks me if I need help crossing the street. Think about it. It's always men. And always a certain type of man. I want to ask them if I was a blind man would you consider me capable of crossing this street? And / or if I was a little old lady with a walker would you consider me capable of crossing this street?
3) As a kid I was mainstreamed. I will say I was aggressively mainstreamed. And I didn't want it any other way. I've covered this before. I don't think I knew what the other ways were.
4) My dad has this kind of paranoid (is that the right word? I don't know) streak. As a kid, he was always warning me about people who were gonna take advantage of me. I'm not saying that these warnings necessarily came in the context of my disability... they sort of came all the time. And whenever he wanted / wants to encourage me to ask for help he always says use people! use them!
5) I have stranger issues.
6) I have man-stranger issues.
7) I still have not found a good place to put all this anger.
8) I didn't even realize how much anger I had for most of my life. Like, until maybe two years ago. But it's been accumulating for all the years previous to that.
This list makes me want to cry. This list makes me want to ask a higher power to please send me some positive helping experiences, or allow me to pay attention to the ones that already exist. I wish I could trust the world more. This anger is so heavy to carry. But I can't trust. I can't bend. I'm just waiting to get slapped down again. These voices are my inner dialogue.
Tuesday, May 22, 2012
I don't think Dear Abby can handle this one...
So yesterday was unintentionally weird. Hm, do weird days ever happen intentionally? Anyway, I have this colleague. She's a bit older than me and she lives with her sister. Both my colleague and her sister have grown daughters who are in abusive marriages and refuse to leave, even though there are kids involved and absolutely everyone in their circle has been like LEAVE HIM. When I see my colleague, sometimes she will vent about the things that happen to her daughter or sometimes her niece, and it's always triggering to me.
I was in an abusive relationship for five years. He was my first boyfriend. It went from when I was 15 to about 20. I don't like to talk about it and I don't think I've blogged about it yet, and I hope to not have to do so in the future, but it's relevant to the story. Anyway, I still have PTSD from that. It mostly hangs out in the background and / or manifests itself as this constant social anxiety I have. So yeah. That happened, and I'm still affected by it. He messed me up real good. But I run through the aphorisms like dwelling on bad shit is like letting that person live rent-free in your head and living well is the best revenge etc. And I'm on a lot of pills. So I'm simply super; thanks for asking! {ting}
Thus, when I say triggering, I mean triggering a PTSD flashback. Yesterday, I saw my colleague. She was really upset. Apparently over the weekend her niece's husband had "beaten the hell out of her" "fractured her front teeth" and "choked her with a cord until she became unconscious." Annnnnnd apparently the kids saw everything and the oldest one (about kindergarten age) knows what's happening. And she, my colleague, is still worried that her niece will go back to her husband even though this is the worst the abuse has ever been. I expressed upsetness and disappointment and anger and all the stuff you would expect... I tried to be supportive... then a little while later my colleague, who knows very vaguely that I had been abused --I may have mentioned it when she told me about her daughter and niece and their situations --starting asking me really personal questions about my abuse.
I was sort of shocked by the fact that she would ask me these personal questions, but I gathered that she was really life/death worried for her niece, that she wanted to know the perspective of someone who had been there and come out of it. So the questions were like, "what was it like?" "why did you stay?" and "why did you leave?" I sort of felt obliged / shocked into answering. I like my colleague a lot. She's a warm, giving, genuine person who devotes her life to helping people. And I think she was looking for some advice about how to convince her niece / daughter to get out of these marriages.
When the conversation was done my colleague was all like, "you're amazing," and I was all like, "I'm okay," and she was like, "No, really, you are; you're amazing," and I was all like, "I have trouble accepting compliments heh heh." So we sort of shared a moment there and I hope I helped her in any way that I could ..... BUT ...
I had started my day full of energy and plans. After she left I started in on my list of things to do, but when it came time to go outside... I had already packed my laptop, computer, notebooks all my crap.. and my brain was just like NOPE. NOT GOING OUTSIDE TODAY. And I was trying to appeal to my brain's reasonable half. C'mon brain, you need some distraction.
I plowed ahead with more "inside" tasks, which included calling my mom to get a family recipe for a cake as part of a poetry project. I wrote down the recipe plus her commentary and the conversation was really hilarious and actually kind of nice because my mom and I were talking about baking and baking brings her out of her constant, profound depression. She used to be a pastry chef. She's an AMAZING baker. Was. Is. She doesn't bake much now but when she does it is amazing. I am an okay baker. I don't do cakes so well. We talked about my problems and she diagnosed the problem and gave me some simple solutions to fix it. She also talked about when she first started how her cakes were flat and dense and horrible and she just kept practicing until she got good. I was like, "I can't even fathom the idea of you making hideous cakes," which made her laugh. By the time I was sentient her cakes were awesome.
After that I tried again to move my body outside. I had my stuff packed. I was looking cute. The bus was gonna show up. And brain was like NOPE. WHAT DID I TELL YOU? And I started have a gigantor panic attack that lasted on and off for the rest of the day until Mike got home.
When the panic was "on" I laid on the couch, watched tv and played Bejeweled. When it was "off" I tried to move ahead with some poetry stuff. But mostly, I was not very productive and it made me feel guilty.
Here is the Dear Abby part. Like I mentioned, I like my colleague. I want to be supportive. But I fear that --especially now that we've shared this moment --that she will think our intimacy has leveled up and we can talk about stuff like this more often. Except even before yesterday I was thinking my colleague can be so triggering; I wish I knew how to respectfully tell her to back off without it being mega-awkward. I don't want her to know that she's triggering me. I just want her to talk about something else. Like animals. She has three cats and three dogs. Like me, she carries pictures of her animals on her phone. You see? Different conversation tack.
Luna is now making incursions on my keyboard and I'm afraid she's gonna erase my entire entry, plus make a large monetary contribution to the Republican party on my behalf.
I was in an abusive relationship for five years. He was my first boyfriend. It went from when I was 15 to about 20. I don't like to talk about it and I don't think I've blogged about it yet, and I hope to not have to do so in the future, but it's relevant to the story. Anyway, I still have PTSD from that. It mostly hangs out in the background and / or manifests itself as this constant social anxiety I have. So yeah. That happened, and I'm still affected by it. He messed me up real good. But I run through the aphorisms like dwelling on bad shit is like letting that person live rent-free in your head and living well is the best revenge etc. And I'm on a lot of pills. So I'm simply super; thanks for asking! {ting}
Thus, when I say triggering, I mean triggering a PTSD flashback. Yesterday, I saw my colleague. She was really upset. Apparently over the weekend her niece's husband had "beaten the hell out of her" "fractured her front teeth" and "choked her with a cord until she became unconscious." Annnnnnd apparently the kids saw everything and the oldest one (about kindergarten age) knows what's happening. And she, my colleague, is still worried that her niece will go back to her husband even though this is the worst the abuse has ever been. I expressed upsetness and disappointment and anger and all the stuff you would expect... I tried to be supportive... then a little while later my colleague, who knows very vaguely that I had been abused --I may have mentioned it when she told me about her daughter and niece and their situations --starting asking me really personal questions about my abuse.
I was sort of shocked by the fact that she would ask me these personal questions, but I gathered that she was really life/death worried for her niece, that she wanted to know the perspective of someone who had been there and come out of it. So the questions were like, "what was it like?" "why did you stay?" and "why did you leave?" I sort of felt obliged / shocked into answering. I like my colleague a lot. She's a warm, giving, genuine person who devotes her life to helping people. And I think she was looking for some advice about how to convince her niece / daughter to get out of these marriages.
When the conversation was done my colleague was all like, "you're amazing," and I was all like, "I'm okay," and she was like, "No, really, you are; you're amazing," and I was all like, "I have trouble accepting compliments heh heh." So we sort of shared a moment there and I hope I helped her in any way that I could ..... BUT ...
I had started my day full of energy and plans. After she left I started in on my list of things to do, but when it came time to go outside... I had already packed my laptop, computer, notebooks all my crap.. and my brain was just like NOPE. NOT GOING OUTSIDE TODAY. And I was trying to appeal to my brain's reasonable half. C'mon brain, you need some distraction.
I plowed ahead with more "inside" tasks, which included calling my mom to get a family recipe for a cake as part of a poetry project. I wrote down the recipe plus her commentary and the conversation was really hilarious and actually kind of nice because my mom and I were talking about baking and baking brings her out of her constant, profound depression. She used to be a pastry chef. She's an AMAZING baker. Was. Is. She doesn't bake much now but when she does it is amazing. I am an okay baker. I don't do cakes so well. We talked about my problems and she diagnosed the problem and gave me some simple solutions to fix it. She also talked about when she first started how her cakes were flat and dense and horrible and she just kept practicing until she got good. I was like, "I can't even fathom the idea of you making hideous cakes," which made her laugh. By the time I was sentient her cakes were awesome.
After that I tried again to move my body outside. I had my stuff packed. I was looking cute. The bus was gonna show up. And brain was like NOPE. WHAT DID I TELL YOU? And I started have a gigantor panic attack that lasted on and off for the rest of the day until Mike got home.
When the panic was "on" I laid on the couch, watched tv and played Bejeweled. When it was "off" I tried to move ahead with some poetry stuff. But mostly, I was not very productive and it made me feel guilty.
Here is the Dear Abby part. Like I mentioned, I like my colleague. I want to be supportive. But I fear that --especially now that we've shared this moment --that she will think our intimacy has leveled up and we can talk about stuff like this more often. Except even before yesterday I was thinking my colleague can be so triggering; I wish I knew how to respectfully tell her to back off without it being mega-awkward. I don't want her to know that she's triggering me. I just want her to talk about something else. Like animals. She has three cats and three dogs. Like me, she carries pictures of her animals on her phone. You see? Different conversation tack.
Luna is now making incursions on my keyboard and I'm afraid she's gonna erase my entire entry, plus make a large monetary contribution to the Republican party on my behalf.
Friday, May 18, 2012
Bi-visual (pt. 3) : The Epic Conclusion
For the purpose of finishing what I started, here's part 3 where I finally talk about Cathy Kudlick. Kudlick is a scholar. My sharing of her article doesn't come with much good scholarly commentary, as I had wanted it to. There's one cat in my lap, one destroying small items around the house, and a pile-driver going off outside my house. And one cup of coffee has not woken me up sufficiently. So I mostly share large bits from her article and talk about my personal reaction / recognition.
TO RECAP: I may have mentioned that in my internet searching quest for others who have the white-cane-social-anxiety thing, I accidentally googled myself and I was like blargh sad sad sad. Then my new cane arrived. I thought ooh! the shiny! new! cane! will help drag me outside and put this social anxiety thing to rest, at least temporarily. Because I couldn't wait to try it out.
But as I started testing the cane in the house, I had some problems adjusting to the new telescoping style, so elegant designed but so different from what I was used to. So I searched for a video on how to properly use it --nuthin. But then I widened my search result to something really generic like "telescoping white cane" and came upon, not instructions for use, but a belated reply to the search I had conducted a few days earlier.
Kudlick's article from Disability Studies Quarterly presented me with another perspective of someone trying to navigate this in-between (i.e. blind / seeing) space --both internally as she tried to integrate it with her past experience of inherited eyesight problems and her family's paradoxical denial of them, but also externally, as someone "coming out" as a cane user in her adult years.
You have to understand, the amount of other blind people that I know is actually rather limited. Like I can count the number on one hand. And I don't need the whole hand. So when I saw this article it really meant something.
She has a different type of blindness than I do, but about the same amount of overall vision --though it's traits differ from mine. For example, she can ride a bike; I can't. But I think I have less trouble reading than she does. But but but... here's a paragraph that could have come out of my own life:
Beautiful as it all has been, my vision remains unreliable. One of the many operations I had as a young adult required the surgeon to enlarge my pupils, with the painful consequence that my eyes are permanently dilated, and thus extremely sensitive to light. I also have nystagmus, a series of rapid muscle movements that causes my eyes to vibrate, jump, and wander, and generally carry on a rich life of their own. This makes life especially interesting in crowded, chaotic places such as airports or hotels. Since I lack depth perception, I'm easily confused by shadows, brick walkways, curbs, changes in floor texture, and steps. One instant I might have what I imagine to be a nice clear snapshot with bright colors and clear lines that define shapes or even people who I recognize. Another, the world comes to me through a series of rapid images that fly by so quickly that my brain can't keep up. If I meet someone wearing a blue sweater early in the day, I can easily find her in a crowd - until the next day when she wears something different, or later that same day when she decides to take it off.
[...]
For years I struggled with how to explain this in the first split-second encounter with every new person I'd meet. I had to find a way of letting students know that I couldn't see them while still coming across as a competent teacher. Other times, I found it impossible and humiliating to explain to a friend or a colleague....
Finding these words were so... "comforting" is not the right word, nor is "inspiring." It's more like you've been hollering down the shaft of a well for so long, hearing only your own echo, and suddenly you hear a voice from the other end saying, tentatively, "hello?"
She talks about labels and the inadequacy of them. Not that I'm in a hurry to label myself, but we live in a world where it is helpful to be easily categorized --at least in this milieu of "split-second encounters" she talks about. I want to be able to say to someone quickly and easily this is what it is.
There wasn't even a term to describe someone like me. My first label, when I started to encounter people outside my family, was the impossibly vague "nearsighted." (At first I thought I was "near-sided" because I walked close to things to see them.) There was "visually impaired" (vague), "legally blind" (vague and legalistic), and statements such as "I don't see well" (vague and euphemistic). "Low vision" also had its drawbacks, linked as it was with "low intelligence," "low functioning," and various other "lows." There was even a vogue for terms such as "sight impaired" and "visually challenged" or — my particular nomination for the Most Condescending Award — "Visually Impaired Person," a VIP.
I think this first sentence below says a lot. Deep down, most of us want to belong to a place. We want to be able to indicate this is who I am, and for others to get the message, whether they understand the experience or not.
More important than labels was that I didn't seem to fit into anyone's conception of how either blind or sighted people act in the world. This became apparent as I tried to sort out if and when to use my white cane. To be sure, it can be a huge help by enabling me to walk with more confidence in unfamiliar or dark environments. It also allows me to ask colleagues and students who they are, rather than play my usual sloppy game of dancing around identities until I trick them into revealing themselves....But the cane also introduces its own set of complexities because I don't always need it, and frankly, life is simpler when I can do without. Like an umbrella when it isn't raining, the cane effectively eliminates the use of one arm.
I would just like to say it again. THE CANE EFFECTIVELY ELIMINATES THE USE OF ONE ARM. So to those people who are incredulous (I have had people come up to be and be like, "you don't seem like you need that") I want to say... would I be using it if I didn't? Seriously. Think of all the things you can do with a multi-tasking set of two hands. You can do any number of these things at the same time 1) carry a handbag or brief case 2) hold your coffee 3) hail a cab or bus 4) walk your dog 5) push a stroller 6) schlep a bag of groceries 7) read a book at the bus stop 8) text 9) peruse the merch outside that new house-of-cute-dresses that recently opened up 10) use an umbrella... and so forth. I guess I get cranky on this point too because..... because I could get by without using it... just not as safely and I could coffee-text-hail-bus-etc. But I've made this decision. Cos I'm sick of passing. And pitching headfirst off curbs, having cars suddenly turn in front of me.... I guess in a way I'm grieving the use of my arm. That sounds over-indulgent, says the judge in my head.
And of course sighted people's condescending, panicky behavior around white canes also deters me; in some situations I have enough vision to see people dart out of the way or I experience their little eye tests when they plant themselves in my path or stick out their tongues. And because I can obviously see things ... I know [people] must wonder about the woman escorted to the airport departure gate with her white cane, only to start checking messages on her Blackberry and read from her Kindle.
This last sentence (about the Kindle) really got me. I like to take pictures. I like to make art. And jewelry. Visual things. When I attempted this white cane experiment before, in Ohio, I felt acutely self-conscious whenever I would whip out my cell to snap something interesting. Like 1,000 eyes (or just one pair) would be watching, thinking... huh?
Ever since I chose to use a white cane in selected situations, I've collided head-on with society's (undiagnosed) case of "cryptophobia" - my term for everyone's panic in the face of ambiguity. It might be the same angst many feel when they can't immediately determine someone's gender; as they search their data banks for clues - expected behaviors, dress, voice, gait, facial expression, body space - they overload if some detail doesn't come to the rescue in fixing the mysterious identity.
I wrote a poem that engages this concept of "cryptophobia," --both my own of myself and those who see me --called "Suites for the Modern Dancer." And I would like to write more poems to explore this subject. You have to understand, this is, again, the hello from the bottom of the well. I've never personally heard / read about / met anyone who had this experience, as it pertains to vision / not-vision.
And so I return to this idea of naming, and the inadequacy of names.
The telescoping cane does not contract as easily as it expands. Yesterday, by myself, I used it in the drugstore and a coffee shop, instead of folding it up and putting it in my purse. This goes further than my original declaration to myself to use the cane outside; only inside if it's really busy / crowded --airport, hospital, conference. How do I want to be seen?
And... I have to stop now. Luna keeps climbing from my lap onto the keyboard onto my desk into my coffee knocking papers and books asunder. I have a headache. My eyes are starting to jounce about. Rest time. I haven't even gotten into the tattoos yet.
TO RECAP: I may have mentioned that in my internet searching quest for others who have the white-cane-social-anxiety thing, I accidentally googled myself and I was like blargh sad sad sad. Then my new cane arrived. I thought ooh! the shiny! new! cane! will help drag me outside and put this social anxiety thing to rest, at least temporarily. Because I couldn't wait to try it out.
But as I started testing the cane in the house, I had some problems adjusting to the new telescoping style, so elegant designed but so different from what I was used to. So I searched for a video on how to properly use it --nuthin. But then I widened my search result to something really generic like "telescoping white cane" and came upon, not instructions for use, but a belated reply to the search I had conducted a few days earlier.
Kudlick's article from Disability Studies Quarterly presented me with another perspective of someone trying to navigate this in-between (i.e. blind / seeing) space --both internally as she tried to integrate it with her past experience of inherited eyesight problems and her family's paradoxical denial of them, but also externally, as someone "coming out" as a cane user in her adult years.
You have to understand, the amount of other blind people that I know is actually rather limited. Like I can count the number on one hand. And I don't need the whole hand. So when I saw this article it really meant something.
She has a different type of blindness than I do, but about the same amount of overall vision --though it's traits differ from mine. For example, she can ride a bike; I can't. But I think I have less trouble reading than she does. But but but... here's a paragraph that could have come out of my own life:
Beautiful as it all has been, my vision remains unreliable. One of the many operations I had as a young adult required the surgeon to enlarge my pupils, with the painful consequence that my eyes are permanently dilated, and thus extremely sensitive to light. I also have nystagmus, a series of rapid muscle movements that causes my eyes to vibrate, jump, and wander, and generally carry on a rich life of their own. This makes life especially interesting in crowded, chaotic places such as airports or hotels. Since I lack depth perception, I'm easily confused by shadows, brick walkways, curbs, changes in floor texture, and steps. One instant I might have what I imagine to be a nice clear snapshot with bright colors and clear lines that define shapes or even people who I recognize. Another, the world comes to me through a series of rapid images that fly by so quickly that my brain can't keep up. If I meet someone wearing a blue sweater early in the day, I can easily find her in a crowd - until the next day when she wears something different, or later that same day when she decides to take it off.
[...]
For years I struggled with how to explain this in the first split-second encounter with every new person I'd meet. I had to find a way of letting students know that I couldn't see them while still coming across as a competent teacher. Other times, I found it impossible and humiliating to explain to a friend or a colleague....
Finding these words were so... "comforting" is not the right word, nor is "inspiring." It's more like you've been hollering down the shaft of a well for so long, hearing only your own echo, and suddenly you hear a voice from the other end saying, tentatively, "hello?"
She talks about labels and the inadequacy of them. Not that I'm in a hurry to label myself, but we live in a world where it is helpful to be easily categorized --at least in this milieu of "split-second encounters" she talks about. I want to be able to say to someone quickly and easily this is what it is.
There wasn't even a term to describe someone like me. My first label, when I started to encounter people outside my family, was the impossibly vague "nearsighted." (At first I thought I was "near-sided" because I walked close to things to see them.) There was "visually impaired" (vague), "legally blind" (vague and legalistic), and statements such as "I don't see well" (vague and euphemistic). "Low vision" also had its drawbacks, linked as it was with "low intelligence," "low functioning," and various other "lows." There was even a vogue for terms such as "sight impaired" and "visually challenged" or — my particular nomination for the Most Condescending Award — "Visually Impaired Person," a VIP.
I think this first sentence below says a lot. Deep down, most of us want to belong to a place. We want to be able to indicate this is who I am, and for others to get the message, whether they understand the experience or not.
More important than labels was that I didn't seem to fit into anyone's conception of how either blind or sighted people act in the world. This became apparent as I tried to sort out if and when to use my white cane. To be sure, it can be a huge help by enabling me to walk with more confidence in unfamiliar or dark environments. It also allows me to ask colleagues and students who they are, rather than play my usual sloppy game of dancing around identities until I trick them into revealing themselves....But the cane also introduces its own set of complexities because I don't always need it, and frankly, life is simpler when I can do without. Like an umbrella when it isn't raining, the cane effectively eliminates the use of one arm.
I would just like to say it again. THE CANE EFFECTIVELY ELIMINATES THE USE OF ONE ARM. So to those people who are incredulous (I have had people come up to be and be like, "you don't seem like you need that") I want to say... would I be using it if I didn't? Seriously. Think of all the things you can do with a multi-tasking set of two hands. You can do any number of these things at the same time 1) carry a handbag or brief case 2) hold your coffee 3) hail a cab or bus 4) walk your dog 5) push a stroller 6) schlep a bag of groceries 7) read a book at the bus stop 8) text 9) peruse the merch outside that new house-of-cute-dresses that recently opened up 10) use an umbrella... and so forth. I guess I get cranky on this point too because..... because I could get by without using it... just not as safely and I could coffee-text-hail-bus-etc. But I've made this decision. Cos I'm sick of passing. And pitching headfirst off curbs, having cars suddenly turn in front of me.... I guess in a way I'm grieving the use of my arm. That sounds over-indulgent, says the judge in my head.
And of course sighted people's condescending, panicky behavior around white canes also deters me; in some situations I have enough vision to see people dart out of the way or I experience their little eye tests when they plant themselves in my path or stick out their tongues. And because I can obviously see things ... I know [people] must wonder about the woman escorted to the airport departure gate with her white cane, only to start checking messages on her Blackberry and read from her Kindle.
This last sentence (about the Kindle) really got me. I like to take pictures. I like to make art. And jewelry. Visual things. When I attempted this white cane experiment before, in Ohio, I felt acutely self-conscious whenever I would whip out my cell to snap something interesting. Like 1,000 eyes (or just one pair) would be watching, thinking... huh?
Ever since I chose to use a white cane in selected situations, I've collided head-on with society's (undiagnosed) case of "cryptophobia" - my term for everyone's panic in the face of ambiguity. It might be the same angst many feel when they can't immediately determine someone's gender; as they search their data banks for clues - expected behaviors, dress, voice, gait, facial expression, body space - they overload if some detail doesn't come to the rescue in fixing the mysterious identity.
I wrote a poem that engages this concept of "cryptophobia," --both my own of myself and those who see me --called "Suites for the Modern Dancer." And I would like to write more poems to explore this subject. You have to understand, this is, again, the hello from the bottom of the well. I've never personally heard / read about / met anyone who had this experience, as it pertains to vision / not-vision.
And so I return to this idea of naming, and the inadequacy of names.
But how to describe the person who actually sees this way? How to harmonize how I see with how I want to be seen?
I think this phrasing is very important ---how to harmonize how I see with how I want to be seen? That is something I have yet to determine. How do I want to be seen? When I have a choice, what are the parts of me I want to display? How will these signifiers be interpreted? The telescoping cane does not contract as easily as it expands. Yesterday, by myself, I used it in the drugstore and a coffee shop, instead of folding it up and putting it in my purse. This goes further than my original declaration to myself to use the cane outside; only inside if it's really busy / crowded --airport, hospital, conference. How do I want to be seen?
And... I have to stop now. Luna keeps climbing from my lap onto the keyboard onto my desk into my coffee knocking papers and books asunder. I have a headache. My eyes are starting to jounce about. Rest time. I haven't even gotten into the tattoos yet.
Thursday, May 17, 2012
Tuesday, May 15, 2012
It wasn't a lifestyle choice; I was born bi-visual (pt. 2)
In the second installment, I talk about getting my cane.
So, to pick up where I left off, I was feeling anxious and angsty about not going outside, and I googled and found my blog and it just made a meta-mess in my head. So I texted Mike asking if my new cane had come yet. I don't get packages sent to our house because of this ridiculous UPS injunction that was put there in response to a previous tenant, where they ALWAYS required a signature upon delivery. And we can't lift it. Even though we own the damn house. Anyway... Mike texted back Probably? A package for you from the blind something or other came and I was like !!!!!!!!!! NEW CANE.
When he got home he gave me the package and suddenly I had my doubts. It weighed nothing. Like when you are expecting your new laptop and Apple sends you this laptop-sized box but all it contains is the paperwork for your extended AppleCare warranty. I was like ... this is paperwork for my cane? A slip to say it's out of stock? It didn't help that the outside of the box said FREE MATTER FOR THE BLIND OR HANDICAPPED. In retrospect, maybe they get a discount postal rate or something if they put that on the outside. When I opened it up, I found MY NEW CANE. And a very brief instructional sheet labeled Shipping Type: Free Matter.
So, to pick up where I left off, I was feeling anxious and angsty about not going outside, and I googled and found my blog and it just made a meta-mess in my head. So I texted Mike asking if my new cane had come yet. I don't get packages sent to our house because of this ridiculous UPS injunction that was put there in response to a previous tenant, where they ALWAYS required a signature upon delivery. And we can't lift it. Even though we own the damn house. Anyway... Mike texted back Probably? A package for you from the blind something or other came and I was like !!!!!!!!!! NEW CANE.
When he got home he gave me the package and suddenly I had my doubts. It weighed nothing. Like when you are expecting your new laptop and Apple sends you this laptop-sized box but all it contains is the paperwork for your extended AppleCare warranty. I was like ... this is paperwork for my cane? A slip to say it's out of stock? It didn't help that the outside of the box said FREE MATTER FOR THE BLIND OR HANDICAPPED. In retrospect, maybe they get a discount postal rate or something if they put that on the outside. When I opened it up, I found MY NEW CANE. And a very brief instructional sheet labeled Shipping Type: Free Matter.
So, first of all, the new cane comes in a velvet case. Like something you might to cradle a small musical instrument... like a piccolo maybe? And it really does weigh nothing. Though the new cane is six inches longer, it weighs a little over 3 oz. The old cane weighed 9 oz. Here are some pictures of the new cane. It's quite sophisticated looking.
In the first one, you can see how long it is but also the clean design scheme. It looks like the tuxedo of canes. In the second, I'm trying to get a close-up of the words on the first section. It says Designed by Chris Park, Carbon Fiber, and gives the NFB address.
And lastly, I like this detail: The little icon depicts the action of the blind person using the cane as one of elegance and grace. I appreciate this gesture, as I don't often feel elegant.
When I tried to use the cane, however, I felt quite less elegant and wanted to request an immediate in-service with Mr. or Ms. Park. This cane is gorgeous, ultra-light, and elegant-looking, but the telescoping aspect is going to be difficult to master. Also, I worry that the supremely broken sidewalks of my neighborhood are gonna reduce this baby to a bent length of awkwardness in about two minutes.
See how cute the new cane is? With the elegant tip on the end? Much nicer looking than my old canes' "pencil tip." The picture below shows what a pencil tip looks like (except my tips were narrower, more like the diameter of the cane itself). Thanks to The Carroll Center for the Blind for "letting" me borrow their image. The cane below more-or-less looks like my old cane(s) except mine were made from aluminum and I'd decoupaged the handles so they weren't so ugly.
Anyway, that pencil tip was rugged. And see how thick the overall cane body is? My cane(s) took a beating. I'm really concerned that this new one is a bit of a hothouse flower. Now, on to the concept of telescoping. The instruction sheet reads:
YOUR NEW TELESCOPING CANE
We hope that your new telescoping cane will serve you well. Here are some tips for extending the longevity of the this cane.
Correctly Extending and Collapsing a Telescoping Cane
To extend the cane, pull out each section fully; then twist it with the section above it to tighten the connection. To collapse the cane, untwist each section to loosen the connection.
NOTE: Do NOT attempt to collapse the cane by banging the cane straight down on the ground, [I admit I thought about this within the first five seconds of deploying the cane before reading the instructions] as the pressure may damage the cap! Always untwist the sections to loosen them!
At this time we do not have replacement caps available for most types of telescoping canes. However, replacement tips are available.
I had to read the last sentence several times because at first I thought it was directly contradicting itself. I still haven't figured out the difference between a cap and a tip. And after practicing with the cane so that I wouldn't look like a megadork in the field, so to speak, I'm still either tightening those sections too tightly, so that when I need to put it away, I'm standing there trying to un-tighten the sections for whole minutes OR I don't tighten them enough and the little lowest section collapses as I try to use it. I seem to have more of a problem with the former (over-tighten) than the latter (under-tighten), but internet searches reveal that some people have a chronic problem with this type of cane collapsing as they are using it.
I may wait on Part 3 of this entry (where I finally talk about Cathy Kudlick and her epiphanic DSQ article) because my eyes are really tired after doing these two. I may just go upstairs and watch some tv while practicing the tightening / untightening thing again. I searched for videos on precisely how to do this, but nay.
Do they mean give it a little twist or really screw it in there?
Are the insides of the sections in fact threaded or do they achieve tension by some other means?
Have I, in fact, completely lost my ability to perform so simple a task as righty-tighty-lefty-loosey?
Let's just hope the box doesn't end up being the best part.
(That's Ruskin, my oldest. Don't disturb him in his new bed.)
It wasn't a lifestyle choice; I was born bi-visual (pt. 1)
Okay, this is gonna be an epic blog entry. First, two things. Wait, three. First thing)) this is who I have sitting in my lap as I type.
It's Luna, my youngest. Isn't she adorable? She likes to recline with her lower half and then cling to my boobs with her front paws (claws, really). Ouch. But it's nice to have such a supportive friend around when confronting heady topics on one's blog, such as this concept which I have termed for short-hand purposes, bi-visuality. It's Cathy Kudlick's term. I'll say more about her later in part 2 or 3. You know I've been exploring this same concept. What I've found out over the weekend is that there are many blind people doing the same. I read a stat that 85% of blind people who use white canes have some usable vision. I think I got that right. I'm sure about the number at least. Bad academic --I'm not going back to re-locate and document my source.
Second thing)) waiting for my cane and angsting over the vicissitudes of bi-visuality, I found out that there's a list of blind bloggers. I added a link so you can see who they are too! I thought, when I found it, this may be the beginning of the support I'm looking for. And then I promptly "forgot" about it.
You see I have this avoidance problem. Sometimes it manifests as "I forgot." Am I making sense so far? I'm only on my starter coffee, and the adorable kitty that I snapped just moments before is now dismantling the dining room piece by tiny piece, and I'm distracted putting all this effort into ignoring her.
Third thing)) NEW DEFINING EXAMPLE OF IRONY : Yesterday I was practicing another one of my avoidance strategies, procrastination, and I was procrastinating going outside. Some days I just don't have the psychic energy in me to deal with the strangers who make my life-with-cane difficult. And it was raining. And I was doing a LOT of house chores. But I still was feeling bad about myself for not going out. Calling myself bad names indeed. And so, looking for some internet support / advice I googled "white cane" "social anxiety." The third and fourth hits were THIS BLOG. I was like really? Universe? Really?
In Part 2, I finally get my new cane... and wish it came with better-than-IKEA-quality instructions.
It's Luna, my youngest. Isn't she adorable? She likes to recline with her lower half and then cling to my boobs with her front paws (claws, really). Ouch. But it's nice to have such a supportive friend around when confronting heady topics on one's blog, such as this concept which I have termed for short-hand purposes, bi-visuality. It's Cathy Kudlick's term. I'll say more about her later in part 2 or 3. You know I've been exploring this same concept. What I've found out over the weekend is that there are many blind people doing the same. I read a stat that 85% of blind people who use white canes have some usable vision. I think I got that right. I'm sure about the number at least. Bad academic --I'm not going back to re-locate and document my source.
Second thing)) waiting for my cane and angsting over the vicissitudes of bi-visuality, I found out that there's a list of blind bloggers. I added a link so you can see who they are too! I thought, when I found it, this may be the beginning of the support I'm looking for. And then I promptly "forgot" about it.
You see I have this avoidance problem. Sometimes it manifests as "I forgot." Am I making sense so far? I'm only on my starter coffee, and the adorable kitty that I snapped just moments before is now dismantling the dining room piece by tiny piece, and I'm distracted putting all this effort into ignoring her.
Third thing)) NEW DEFINING EXAMPLE OF IRONY : Yesterday I was practicing another one of my avoidance strategies, procrastination, and I was procrastinating going outside. Some days I just don't have the psychic energy in me to deal with the strangers who make my life-with-cane difficult. And it was raining. And I was doing a LOT of house chores. But I still was feeling bad about myself for not going out. Calling myself bad names indeed. And so, looking for some internet support / advice I googled "white cane" "social anxiety." The third and fourth hits were THIS BLOG. I was like really? Universe? Really?
In Part 2, I finally get my new cane... and wish it came with better-than-IKEA-quality instructions.
Saturday, May 12, 2012
a) nightmare b) some good news
So I woke up this morning because Ruskin yowled and yowled. I was grateful because I was having a hard time breaking free of this nightmare:
the university for which I previously taught (and in the dream was still teaching at, or trying to) had a principal. A principal, like at a high school, who disciplined all the students and also made the hiring decisions. He looked like the Bob Kelso character from Scrubs.
I had made him a PowerPoint (as part of an interview portfolio?) in which I described what it was like to be blind. I used both an argumentative approach and also a poetic one. Like, logic entangled with metaphor.
Except I accidentally hit the "send" button (PowerPoint had a send button) and it whisked into his inbox without revision. I got it back with a big silly asterisk in the corner. It said F+ --"your arguments are not strong enough."
I wrote a groveling email in which I tried to explain the accidental hitting of the send button and could I have more time to complete the assignment? Instead of waiting for a response, I decided to just revise the damn thing and send it off again. I got his response. This time it said F* --"_________
and then I woke up.
The good news is that (I think I can share this? I haven't signed a contract but I did receive an acceptance email....) I'm teaching in the Young Writers' Institute this summer, high school level. w00t!!!!!
the university for which I previously taught (and in the dream was still teaching at, or trying to) had a principal. A principal, like at a high school, who disciplined all the students and also made the hiring decisions. He looked like the Bob Kelso character from Scrubs.
I had made him a PowerPoint (as part of an interview portfolio?) in which I described what it was like to be blind. I used both an argumentative approach and also a poetic one. Like, logic entangled with metaphor.
Except I accidentally hit the "send" button (PowerPoint had a send button) and it whisked into his inbox without revision. I got it back with a big silly asterisk in the corner. It said F+ --"your arguments are not strong enough."
I wrote a groveling email in which I tried to explain the accidental hitting of the send button and could I have more time to complete the assignment? Instead of waiting for a response, I decided to just revise the damn thing and send it off again. I got his response. This time it said F* --"_________
and then I woke up.
The good news is that (I think I can share this? I haven't signed a contract but I did receive an acceptance email....) I'm teaching in the Young Writers' Institute this summer, high school level. w00t!!!!!
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