At the end of the year....

This should be an awesome 2012 recap post, or a top ten books/shows/memes list, or an outline of my plans for 2013. Unfortunately, it's can't be. I'm ringing in the new year in the hospital. I had a planned surgery on the 26th and have to lie in a bed called a clinatron, which is full of sand and has air blowing through it to keep the sand moving. This prevents pressure from being on any part of your body so a wound can close. It's loud and I can't sit up well in it. This, no major post, just s note to say thanks to all who have read this blog in 2012. Old friends, new friends, roommates, family. All of you are so special to me and I love you! Better post when I'm discharged. And please no worry about me. I'm lying around reading and am thus happy. Also, nobody panic, I have seen Les Mis. All is well.

How're We Gonna Pay?

Oh blogosphere, I know it's been far too long, and I have so much to blog about, but finals are kicking my butt! I turned in my independent study, but I have one more paper before I'm through. However, I wanted to take a break from that work to bring you a post about the production of RENT my roommate and I saw on Sunday night.

It was a student production done at the cabaret-style club near our apartment, where I saw Cabaret and where Amanda Palmer played a bunch of times. The spaces incredible for a minimalistic show like RENT, and they used it beautifully. The ensemble songs like "Rent" and "La Vie Boheme" were excellent, mostly because so much of the chorus just owned it. Angel and Mimi were also really talented.

The production made a few odd choices, though. The arc of Mimi's drug use wasn't clear--a shame because Mimi was great--which made her and Roger seem to be yo-yoing only because of Benny. Roger, therefore, seemed like a bit of a jerk, and the actor wasn't very strong in songs like "One Song Glory." I didn't believe he was dying. I didn't believe Mimi was dying, either, which makes me wonder: Are we too far out from the AIDS epidemic for a privileged group of Bostonians to do this show justice for a quick Christmas run? To understand the pains of young artists trying to make it in the East Village of the 90s? Ot was this just a group of musical theater students who haven't quite gotten the "acting" thing down yet? I'm not sur, but the part of my brain that critiqued a million shows during my days of high school theater woke up and wondered.

There was some whitewashing in the cast as well, which is unfortunately unsurprising in this town. Collins was white, which doesn't matter, except that his inability to nail the jazzy tone in "Santa Fe" called attention to this. Benny was Caucasian as well, and none of the typically-white (or, I guess, originally white) characters were different. In fact, the girl playing Maureen looked strikingly like Idina Menzel. It wasn't the specific racial choices that felt odd so much as the lack of diversity.

Still, it was my first time seeing the show live, meaning I can check something else off sixteen-year-old Chelsey's bucket list.

Tis The Season for Writing Papers

It has been QUITE a weekend, y'all. It's finals time, which means everyone I know is cooped up in their apartments writing papers.

Wait, what?

I'm supposed to be talking about Thanksgiving weekend?

Hahahaha.

Thursday was the one day I left the apartment last week, to go over to my friends' for the holiday. We did have a nice meal and played Evil Baby Orphanage, but then it was back to the laptop. Not too hard, considering I was alone in the apartment. One of my roommates went home to Jersey for the holiday, and the other is gone visiting family in Norway. (I know, right?)

I had to write a justification paper for my independent study, which ended up being almost fifty pages. I somehow also managed to finish the draft of my Work In Progress, which I've been working on for since some time in September. I have sent it off to critique partners and have sent another project to my iPad for revision-reading.

But even with all that, I had a friend over for paper-writing and delivery. My meeting with my advisor is tomorrow, but right now roommate and I are watching Once More With Feeling, the Buffy musical episode. We just created the Facebook event for our Muppet Family Christmas Party, and bought tickets to see RENT at the Oberon next week.

What I'm saying here is, even though there's a ton of work to be done this season, I'm trying to take advantage of the fun that is to be had. I'm living in a great apartment with amazing people, and I don't want to lose a month to work the way I did in September. It's not worth it, no matter what the season!

The Way the Medication Makes Her

Pain. I've been trying to come up with a way to properly discuss the effect of pain for weeks. The conclusion I have come to is that it's one of those things that is difficult to describe unless you're coming out on the other side of it. Maybe it's a societal thing. Humans don't like to admit to pain, and therefore when you're experiencing it, you don't want to draw attention to it. You question yourself whether it's as bad as you think it is, whether you really need the medication you're taking for it, whether it's something you're doing. There's guilt, and shame, and the pain itself, which is beyond frustrating to deal with.

In The Fault in Our Stars, John Green's narrator Hazel says, "The pain was always there, pulling me inside of myself, demanding to be felt. It always felt like I was waking up from the pain when something in the world outside of me suddenly required my comment or attention." Ir's the truest description of pain I've ever encountered, but it doesn't acknowledge the difficulty of escaping said pain. Sometimes it's utterly impossible to comment or attend to a paper or an assignment when the pain tugs you inside. You only become aware of this when the pain is no longer there and suddenly parts of your brain are free.

Pain separates you from what's on the stage of your life.

At least, that's how it was for me until this weekend. 

The picture is my view of the first of two Amanda Palmer concerts I attended this week. The roped-off ADA section on Friday was behind the soundboard and trunks of sound equipment, stage left. It was a great view, but it wasn't the best I could have gotten had I not needed a chair. It made me think about fielding the crowds on Saturday, except by the end of the show, I knew I couldn't have. The new meds I was put on recently took care of most of the pain, but the twinges remained, making themselves known by the end of the night, taking me further away from the action.

Things had gotten so much better. The pain was no longer constant. The separation less noticeable. On Saturday night, I vowed, I would not be forced to disconnect from a minute of Amanda's show. 

Fate was on my side. This was the new location of the ADA section. Needing a chair was no longer a problem. 

I got lucky. The new meds make the old meds work. The pain tried to break through, I could feel it trying, but it didn't succeed in getting my attention. Amanda won that. She always does. 

My dear blog readers, you are perhaps tired of hearing me discuss the way concerts inspire me. They do, though. They inspire me. They enliven me. 

A friend once told me that the feelings she experienced at Wizard Rock events made it her church. 

That's what shows, particularly Amanda shows, are to me. I don't want to miss a second of them. 

Near by me, in the ADA/VIP section, there was a woman clearly in pain. I'm not sure who she was, though I'm fairly sure she and her husband were the "VIPs." Toward the end of the show, she was obviously in pain--migraine, I assume. I watched her detach from the show, until she was curled up in her seat, eyes hidden behind her hand. She cared enough to stay, and yet she wasn't there. 

I wished I could have offered her the pills in my bag. Not because I thought she'd take a pill from a strange girl at a concert. I know how creepy that is. No. I wanted a way to say, "I know what you're going through. I know. It's real. It's awful. I'm sorry. So sorry. You are not alone."

Except, somehow we are all alone in our pain, even in the places we should feel the most connected. 

Real Kids Like Me!

I read this book two nights ago. I'm not calling this a full review, because let's face it, only a disability studies obsessed weirdo is going to track it down (ie me). It's just as ridiculously eighties as you'd expect from the cover. The girl, Amanda, is spending the summer on the island where the pilgrims first landed (as opposed to settled). The boy, Jake, is a deaf boy who lives on the island helping his father, a lobster fisherman. I liked that Jake's deafness wasn't the only barrier between them, and thought the author handled it marginally well, with a bit of--oh, no of course he doesn't REALLY try to fit in at school. And, really, he's been deaf ten years and his father still needs him to sign slower?--but generally well.

But that's not what we're here to talk about. (I know, right?)

What I want to talk about is the sheer beauty of eighties romance novels. Amanda wears her boyfriend's ring on her finger, secured with adhesive tape. Her parents fly him out to the island for a week, and there's no suggestion of ya know, makin' whoopee. They lament not being able to 'phone like normal people, but she writes him long letters! Jake gives her his sweatshirt! He rides up to her house an a horse named Lightening.

There's just the right amount of pointed feminism, too. Jake bets Amanda she can't ride Lightening as well as she can. He tricks her by not bringing a saddle but, oops!, Amanda can ride bareback! And pilot the boat! And dig for clams! (But she'll only throw the rake away if she's searching for Chris's ring.)

There's even a scene where they shower together with all their clothes on.

It's beautiful. And on the last page, scholastic helpfully gave me a list of books to read about "real kids like me!"

If this was what being a "real kid" was like in 1989, then we've gone downhill since. Maybe it's my fault. I was born that year.

To quickly get back on the disability soapbox, the last chapter annoyed me. Amanda teaches Jake to dance--which is great, I love that the author acknowledges that deaf doesn't mean he can't dance--but then she takes him to a party on the mainland and his friends exclaim that he never participates at these things! Look at Amanda humanizing him! Now, granted, the whole novel has been about her entering his world, but there was so little build up to the him-entering-her-world (which is really still his world at this point) that it felt forced.

Still, pretty good overall.

Defining Literature

Last night, my roommate and I went to Org: Literati. Orgs are a regular event put together by Singer Mali, a Boston-based singer/dancer/woman of all trades. They are a pastiche of performing arts showcasing Boston talent, and based on a specific theme. Last year, I went to Org: Insanity. I haven't made it to any between now and then, but since we moved to an apartment literally four blocks from the Oberon, which often hosts them, and we're literature nerds, I couldn't miss this one.

The audience at these things always fascinates me. The Oberon is tied to the American Reparatory Theater, so most of their shows get a handful of ART subscribers, who are often a world apart from the glittered, corseted Org attendees--and yet, this is Boston, so all appreciate the English professor MC teaching us about the ties between sex and synecdoche, and the Victorian-styled band singing about Humpty-Dumpty.

Once the lights go down, I adore Orgs, because they always inspire me. Little things, like the shadow of a performer on the video screen behind her, or the way the bassist sways with his instrument, to the big things like an animated film based on a Bukowski poem. A trapeze artist performing to a haunting melody. The way the MC laughs when members from three band sing along with her musical interpretation of Sailing to Byzantium. It all makes the wheels in my brain click.

But I think what I most loved about this Org was how all-encompassing it was. Something titled "literati" suggest pretension. And, yes, like every art event there was a certain amount of "let me now explain MY SOUL unto you all." But mostly it was "let's all have fun with the words that inspire us." Let us translate literature, a solitary, two-dimensional art we all love, into something tangible.

The best moment of the night for me came during Karin Webb's performance piece. She had her friends send her their favorite quotes, taped them to her body and had audience members choose a quote and read it off. Many quotes came from the authors you'd expect. Hemingway. Kafka. Gabriel Garcia Marquez. Soem made me wonder if they were the person's favorite, or if they wanted to sound educated. There was a Gaiman quote. Not unexpected from a social circle that--to some degree of separation--includes his wife. But there were also quotes from Marcus Zuzak, and best of all Gayle Forman and Stephanie Perkins.

This made me happy for many reasons. First of all, because I loved seeing my beloved YA authors appreciated for what they are--writers of literature who have important things to say. Also, because it reminded me that the people I associate with can appreciate art of all types. They do not limit themselves to books that would be "impressive" or "pretentious". They read books that are wonderful, thoughtful, and enlightening, no matter who they are published for.

I don't know who submitted those quotes. I don't know everyone who performed last night. But I do know I've picked the right group of artistic people to interact with. I can't wait for the next show, for the next opportunity to feel that I'm part of such an intelligent inspirational community.

Luckily for me, it'll probably come soon. I'm going to two Amanda Palmer concerts next week.

Whatever I Do

This post is going to get lost in the buzz of vote, vote, vote. Which, VOTE, VOTE, VOTE, but I sent in my absentee ballot a couple of weeks ago and want to hide from the returns. Hence, another topic for the blog.

Last night, my supervisor from the summer called to tell me that my intern had come in for his meeting with her gushing about how he wanted to go to college, actually interested in his schoolwork and generally more motivated than we've ever seen him. He called me a couple of weeks ago to discuss the same subjects, but the fact that it has stuck means so much.

There are a lot of possibilities for what I might do with my life. I want to be a YA writer, that's not changing, but that's a timeline I can't control. I don't know where I want to live or how I'll be employed, but I do know is I want to keep getting the feeling I got hearing about the progress this young man made. To know that our time together had some kind of an impact on him. That I made a difference.

I'm not egotistical enough to think I hada big hand in the changes he's made, but the influence is there. My books might, once day, influence readers. They might make a difference. And whatever I do, I want to do that.

Huh. Maybe this was kind of about voting....

Friday Five!

1. This Southern gal has seen her share of hurricanes. Ivan whipped out my hometown in 2004, and then Katrina came through to destroy what we'd fixed in 2005. There's something different, though, about it happening to a place like New York. Whenever the hurricanes hit home, it's awful and devastating, but it's expected. We've been through it before. We'll, unhappily, be there again. But New York always seemed kind of impenetrable to me. I understand that cities can get destroyed--I've read about the Great London Fire, the burning of Atlanta, I saw the effects of Katrina on New Orleans--but this...I don't know. It's different.

I still want to live there one day, though.

2.  Best joke I've heard about the Random House-Penguin merger: Hurricane Sandy let the pengins escape from the zoo, and they wandered into random houses.

It took me two reads to get it.

3. I'm finally at a point in my Work in Progress where I WANT to work on it. A lot. It came from changing the ending and restructuring it. I've got a stronger throughline, and I want to get through it!

This desire to work is not helping my sleep patterns, which have gotten ridiculous. I'm naturally nocturnal, meaning that I'll get my writing wind at almost midnight. My body likes to get nine to ten hours of sleep, meaning that I tend to get up at ten or eleven.  I'm trying to let go of the guilt about this and be productive during my awake hours whatever they are. I don't feel overtired or anything like that, so I don't think it's a problem. Just, nocturnal. But my roommates are both morning people and have entire days before I'm up....

4.  A friend of mine on Twitter mentioned the musical The Last 5 Years yesterday, and a high school friend is in a production in Orlando, so I've been relistening to it today. It's beautiful and really captures what failing relationships can be like, but what I've been focusing on the anachronisms. It's about a protege writer, and in one place they mention "Borders" and then later "Random House," which wouldn't have been an issue until last week. It makes me think about how hard we work to make our books timely, when really we never know what's going to change.

5. We had a 90s Halloween Movie Extravaganza in the apartment from Monday to Wednesday. We'd invited people over, but hurricane, so it ended up being my roommates and me. Occasionally just me. We viewed The Witches, Halloweentown, Casper, Tower of Terror, and, of course, Hocus Pocus. Trends noticed? A lot of famous actresses playing witches. Some pretty bad insults. Screenplays that were much better when you were ten. A lot of kitsch and yelling of "GRANDMAAAAAAA!"

It was wonderful.

Book Fest

In obligatory "mention the hurricane" news, I am from Florida. Why am I getting hurricanes in Boston???

Saturday was the Boston Book Festival, a convergence of things for book-nerds of all ages from the two-year-old who wants to meet Llama Llama to the ninety-year-old Harvard professor discussing....whatever they discuss.

My roommate and I started the day off at the Kids Keynote, supposed to be given by none other than Mr. Lemony Snicket. Unfortunately, Mr. Snicket was delayed, and so Mr. Daniel Handler gave a quite good presentation. (And by that I mean, an amazing and hilarious performance).

We waited in the signing line, along with little kids with their noses buried so deep in the books that their parents had to herd them along. A handbell choir played for us while we waited. I am not sure why.

Mr. Handler gave Kathleen a new nickname. Because she had gotten her book signed to "Kathleen, Elizabeth and Francesca," he asked what my relationship to those three was. "Oh," I said, "I live with that one."

"I like that you call her That One," he replied.

Her name is forever That One.

For the rest of the day, I went to panels in gorgeous rooms in the Boston Public Library. I met up with other Simmons students, said hello to Jo Knowles, met Gabrielle Zevin and took a creepy picture of Corey Doctorow for my friend. I also told Rachel Cohn that "Snarl," the name used for a muppet in Dash and Lily's Book of Dares was actually the original name of Gonzo.

We ended the day at Max Brenner, the chocolate-themed restaurant on Boyleston. It was one of those days that made me happy that I'm in a city that takes books so seriously.

Friday Five!

1. I am sleepy today, because I stayed up to order the iPad mini. It's name will be Giles and it will hold all the books and go with me everywhere to fight the vampires. In other news, I'll be selling my Kindle Fire, if anyone is interested.

2. I am not terribly, horribly, very much thrilled with Taylor Swift's new album. I'm reserving judgement a little, because I haven't heard the deluxe version yet, and I tend to really like the extra songs (Often they're more country). This CD is lacking in the story-telling, intimate, amazing lyrics songs I love her for, and I think it has to do with the choice to make this album more about collaboration. Speak Now was all written by Taylor, and I think it shows. She has word-smithing talent, which doesn't shine through as much here.

3. Halloween is coming up, but no one seems to be doing anything, so I orderred a bunch of 90s Halloween movies. There will be a marathon. I already had Hocus Pocus and Casper, but have added Halloweentown, The Witches, The Worst Witch, and Tower of Terror to the collection.

4. In other Apple Product Addiction news, I got an iPhone 5 this week and am a little addicted to speech-to-text and Siri. I say "thank you" to her like a good human overlord, but I'm a little worried that there is a robot apocalypse on the horizon.

5. Tom Hanks. Spoken word poetry. Full House.
 

Query Partner

I'm not very good at sharing my query stats online. I use sites like QueryTracker and AbsoluteWrite, but don't usually mention the letters I have sent out. I prefer to discuss those in private. My mom, and my roommates, and all my writer friends at different places on their journey are incredibly understanding and helpful. However, I'd really like to have a go-to person. Someone who is on the same journey as me--testing the querying waters--who will squee over requests, tear apart the meaning of rejections. Who will check the query a millionth time for flaws, and for whom I can do the same.

Is anyone out there interested in being my query-buddy?

My MS called GHOST LIGHT. It's a YA contemporary/paranormal retelling of "Twelfth Night" wherein seventeen-year-old Natasha's decision to fulfill her dead twin brother's lifelong dream of performing as Hamlet raises ghosts--in more ways than one.

A Perspective

Over on Twitter last night, Amanda Palmer started an informal poll asking four questions:

" quick #InsurancePoll 1) COUNTRY?! 2) profession? 3) insured? 4) if not, why not, if so, at what cost per month (or covered by job)?"

The results, so far, have terrified me. I had no idea that people payed hundreds--sometimes thousands--of dollars a month for insurance in the US, and that people in other countries had no idea we pay so much. Currently, my frequent medical appointments, physical therapy, and all but $7 on my meds are covered by either my parents' insurance or Medicare.

 The fancy bandages I have to buy frequently to protect the wounds my body specializes in are not. Right now those are mostly (supposedly) paid for by vocational rehabilitation, but once I'm out of school that goes away. 

Thanks to Obamacare, I'll stay on my parents' Blue Cross until I'm twenty-six. Because of this, I'm arranging my life so I'll be able to get several necessary surgeries before that birthday. Moreover, I'm afraid of it. 

I can't be refused insurance, but how can i afford it if it'll cost more than my--ridiculously high--rent? Medicare doesn't cover everything, SSDI doesn't give enough to make the rent let alone pay supplemental insurance. Paying my doctors' bills out of pocket won't be an option even if I magically get the stamina to hold down a 9-5, not the part time job I'll hopefully be able to handle on top of writing. 

And I am by no means the worse off of people I know. Instead of partying on her 21st birthday, one of my friends had her parents hunkered down with her in her dorm room waiting for word from the Florida State Medwaiver program, because if they didn't decide to cover her personal care attendants, she'd have to leave school and move the two hours back home--all because she needs help getting in and out of her powerchair and using the restroom. Medicaid, which previously covered her, cuts off when you're twenty-one--no exceptions--and other programs wouldn't step in until she got officially rejected from the waiver. 

I know these aren't the scariest stories out there, but these are the ones that face highly capable college and graduate students who are scared to pursue their dreams--crippled, if you will, not by their disabilities, but because the system wasn't designed to assist them. It was designed to support disabled adults who never dreamed of returning to a job--not young men and women eager to take their place in the world. 

Thanks to the Individuals with Disabilities Education Act (1975) and the Americans with Disabilities Act (1990), we've been raised to think we can do anything anyone else does. Maybe we do it differently, our parents assured us, but we can do it. 

Except we can't. Because the expendable income our cohorts might spend on financing nights out, or even put into savings--gambling on their own health--we must put into the higher costs of daily living. Not having insurance may bite our agemates in the ass. We've all heard the stories of accidents, of undiagnosed illnesses, of pregnancies. But young adults with disabilities get that awakening much earlier, sometimes the day you turn eighteen when your parents say, "All right. You get to call the insurance companies now." 

Those are never fun conversations. They were even less fun for me, because a charge from when I was sixteen had landed on my credit rather than my parents'. While we fought to get it off, I found out how much of your life can be affected by one missed payment, and a crappy credit score.

And, look, I know I have it good. I'm a white, middle class female, living in a nice apartment in a gorgeous city. But the day I graduate all that could be taken from me. I could have to become that disabled family member who lives first in the back bedroom at her (admittedly amazing) parents' house, and then is handed on to her brother years later. I'll fight it every step of the way, but with the cost of insurance, housing, glasses, contacts, medication, paratransit--even grocery delivery--it's a distinct possibility for me and other young adults with disabilities who are much more skilled and have a much better chance of making a mark on the world. 

I want to write young adult books. I know I'm not the next Justin Dart or John Hockenberry. I'm okay with that. But there should be structures in place that let me do that. 

Friday Five

1. This has been an odd week. I was kind of down and unproductive the first few days, and I imagine it had something to do with the emotional rollercoaster of last week. I'm mostly recovered from it now, plowing along on my current WIP and query for Ghost Light.

2. I read David Levithan's Every Day last weekend, which is a novel about a character who wakes up in a different body everyday. A exists an independent self, without gender or physical form. The book was fascinating, particularly because it was a quiet book with a loud premise, at its core it's about self-discovery and romance, and yet it touches on so many other things. The one issue I had with it was a personal one--because A begins the novel as a male, in a heteronormative relationship, I had a harder time not thinking of zir as male later on. I'm wondering if it would have changed if ze had started the novel female and then met the love interest. The audiobook is narrated by a female, so I'm going to check that out and see if it changes my perspective. Also, Levithan didn't take the chance to explore gender-neutral language, and I wish he had.

3. In my sci-fi fantasy class, we've been encountering a lot of diaster novels, be it aliens landing or dystopian societies that are recognizable deteriorations of our society. These freak me out. Not just because with my disability I'd pretty much be dead the second running became the only way to survive. No, I'm just a total princess. If there's a world that doesn't have running water, or books, or buses.... Forget it. I'd be miserable on top of screwed. Do not want.

4. Speaking of dystopians, I also read the final book in the Giver quartet. I didn't hate it the way I did the third book, but it doesn't have the power of The Giver or Gathering Blue. Both of those have standalone power. They don't HAVE to be considered as part of the same story, and they have their own themes and ideas. I don't think Son managed that in quite the same way.

5. This has spoilers for the end of Doctor Who Season Seven. It will make you cry. But it is beautiful.

 

Friday Five

1. I had a reading Wednesday night--my first not for school, and it was AMAZING. The audience ended up being mostly my friends, but I think I would have enjoyed it just as much if it had been strangers. I love reading my work to people--I used to hate it, but now it's one of the only times I get to use my acting mojo. Also, it wasn't just my school friends who came. A veritable contingent of my coworkers from the summer attended. I felt so incredibly supported. I cannot wait until I get to do these on the regular.

2. In that vein, I got a rejection email only about half an hour after the reading. A big one. For the R&R I spent the summer working on. And that sucked. It made the evening bittersweet, in a way, but the reaction of my friends, both to the reading and to the email, made me all the more determined to get back into the submissions world, and keep trying. It's all part of the writing life.

3. I finished The Casual Vacancy last night at two o'clock this morning. I don't want to spoil anyone, but if you've read it EMAIL ME. I want to talk about it! Full disclosure: I really loved it. I thought JKR built the world of Pagford as well as she built the wizarding world, and her obvious knowledge of contemporary society made the connections to politics, emotions, and the human condition in Harry Potter all that much more powerful.

4. Tonight I get to eat sushi and see The Perks of Being a Wallflower with my roommate's friend (and my new friend) Anna. i am super-stoked! I read the "we were infinite" passage of Perks as my banned book at the reading on Wednesday, and it reminded me again of how powerful simple sentences can be.

5. If any of you know any good sources for Harry Potter trivia, let me know. The next gathering here at Ravenclaw Tower is going to be a Harry Potter themed one, and the only trivia we can find online is way too easy for our band of nerdy friends.

Quick Note and Some Thoughts

Bostonians! Tonight I'm participating in the New Voices in YA Panel at the Public Library of Brookline.

Details here!

I'm so excited. I love doing readings. It gives me a fast-forward view of what my life might look like one day.

On another note, I've started reading the criticism and articles I'll be using for my independent study (on disability in children's literature). Yesterday I focused a bit on social history, and once again got smacked in the face by how recently some of these injustices have happened. John Hockenberry--the world renown newscaster--was stopped from going into a theater in New York, on the basis of his wheelchair, in the early 90s, right before the ADA was passed. I guess I should take my shock as a marker of how much better things have gotten in twenty years, but honestly I know they haven't. Reading other articles about the failures of Medicare and Medicaid to help people live productive lives reminds me of experiences my friends are having now. In 2012.

Long road to hoe...

Investing in Stories

This has been a difficult week for TV fans.

Or, at least for me. Pretty much all of the shows I watch--Grey's Anatomy, Doctor Who, Fringe, Downton Abbey--have been a moderate to major amount of heartbreaking, to the point where I am afraid to turn on Switched at Birth tonight. But it all has me wondering, what about these shows (and these characters) makes people like my roommate and I so invested in their lives that we can pick apart the episodes and have major feelings about them for longer than the actual duration of the episode? Is it, in the case of Doctor Who or Fringe, that viewers have been getting to know these characters over the course of years and think of them as old friends, or is it something more?

I think it has to be. I got completely squeeful over Sarah Rees Brennan's Unspoken, and I was only with Kami and the others for a few hundred pages. In other books, I like the characters, but I'm not flailing over them. (Really. I flail.) What makes the difference?

I don't really have an answer to this, it's just something I'm thinking about. Maybe I'll go through the list of characters I obsess with and try to dig under the surface of what makes them tick.

Friday Five!

1. BOSTON AREA PEOPLE: I'm going to be reading at the Brookline Public Library's New Voices in YA event on October 3rd at 6:45pm. It's going to be a fun event, with readings from one of my WIPs as well as my favorite banned book. I'm super excited and hope to see many people there. More info here!

2. Last night, a couple of my friends had a joint birthday dinner at The Cheesecake Factory, and it was a blast, as per usual, but more than that I couldn't believe another year here had passed. Grabbing a cab with my roommate after was so much better than returning to my tiny dorm room. It's nice that everyday things like that can be happy.

3. I'm listening to the new Green Day album and have all these questions about the validity about them continuing to produce these "anthems for the young" when they're not necessarily young themselves, at least not in the way society usually thinks of youth. Billie Joe Armstrong is forty. Does the punk-rock world trap artists in some kind of perpetual adolescence? Also, why are they singing "Kill the DJ"? "Panic" is a Smiths song that should not be touched....

4. I was reading Libba Bray's The Diviners late the other night, and in it the villan whistles a song on his way to kill people. Someone started whistling outside of our kitchen window.

Never. Okay. Again.

5. This is a week old, but if you haven't seen it, you must:

Behold: My Life Goal

Last Friday night, Roommate Kathleen, Friend Allison and I went to a booksigning in Burlington, MA. We'd originally been planning to go to Libba Bray's event at the Brookline Public Library the same day, but Friend Tess told me that Sarah, Holly Black, and Sarah Rees Brennan would be at the Burlington Event. Friend Tess could not attend, leading me to make a phone call that went like this:

Me: Allison, remember how we were going to the Brookline event next Friday, and you were going to take your car to that?
Allison: No, actually, I was going to take my horse--
Me: Right, but, so, and, we're going up to Burlington instead, and we're taking Kathleen and her friend Anna.*
Allison: Okay!

Event preparation was difficult. Libba Bray has written all the things, and seeing the mountain of books piled on the coffee table required me to make CHOICES. (The dumb one of which was leaving Geektastic at home. I'll get it signed one day, I will!) Also, I'd ordered all of the Great and Terrible Beauty series from Abebooks, but one of them had a sticker on the PAPERBACK spine and removing it tore a chunk off and disheartened me so!

We ate at Chili's with my wheelbarrel wheelbarrow (We have recently discovered that like "colander", wheelbarrow is a word I chronically mispronounce) backpack full of books. Then onward to B&N. In the event area, we could only find one chair, which Allison pulled up to the front row for me. I felt like the Gimp on a Throne, with my friends flanking me, but it ended up crowded enough that we were not an island for long and it was less embarrassing. Which, it's not like my friends cared. The authors wouldn't care. Why did I care? Weird baggage, discuss.

The audience was a typically eclectic mix of Actual Teens, Adults and a few of those mythical creatures--boys! I bravely went up to a woman wearing a Maureen Johnson Stare T-shirt, and (shock! amazement!) correctly identified her as FelicityDisco, Maureen Johnson's assistant. She gave me a present! Allison was mystified in a how-do-you-know-people way. I gave her a lesson in The Twitters.

Kathleen and I watched the crowd grow and decided we want no more from life than to have even a smattering of people at booksignings who love our books the way people love these ladies' books.**

Sarah, Holly and Libba were wonderful. What struck my friends and I was how well they get on--they are such good friends. They have genuine love for each others' work and characters and it is awesome.






Sarah reading from Unspoken. Before the stripping. She also acted out The Diviners, pretty accurately from what I can tell three-hundred-odd pages in.

Holly giving Sarah the side-eye Kathleen already gives me sometimes. (Holly is awesome and signed the printout of the not-used, fits-the-series Black Heart cover I had tucked into my book).

Sarah under the table while we sing Happy Birthday to her. 

Their stories and writing tips had us alternately amused and inspired--basically if we can be half as good at them at entertaining a bookish crowd it will be incredible. When the time came for actual signing, my friends and I knew we'd be at the end of the line, so we clustered around my chair listening to the authors chat with teen Nerdfighters, grown-up librarians and the event coordinator who actually said "youse".

In line, Allison took my pile of books for most of the weight, until we got right up to the table. Annoyingly, seconds after I reclaimed them my new(ish) friend hip pain began spasming. It got better once I got to the table, but I probably looked a bit like a drug fiend popping a pill for it two seconds before my turn. There will be a post on this whole pain thing soon. Trying to wrap my head around thoughts on it. (Also, again with the my friends don't mind holding them, why do I worry so?)

Anywho, I've chatted with Sarah before, in person and online, so it was lovely to see her again, chat for a sec about my independent study, tell her the story of Anna and Kathleen* and share a mutual love for Buffy Time. Kathleen talked to Holly about being from Jersey, and I got to tell Libba Bray about my belief that not only does my one-eye-blindness totally make me qualified to be a YA author (she and Sarah are also one-eyed), but that we need to start a club. She agreed. There will be emblazoned smoking jackets.

On the way out, Allison and Kathleen commented on my skills at Knowing People. They'd both known about it, but never gotten to bank on it before. I'm simply not afraid to send an author/artist/person I admire an email. I believe in saying, hey, I like your stuff. It influenced me. Let's chat. Oftener than not, authors are cool about it and eager to exchange emails iffen you're patient and not begging them to read manuscripts.

On the drive back to Cambridge--aka the unending loop that is the interstate--Kathleen and I decided that we want our lives to be like that. We know that signing books for dozens of people for days on end is probably totally exhausting. That it'll take practice to learn to be on, and that neither of us is witty in quite the way of Sarah Rees Brennan. But we want to be up their talking about our books just as much as we want to see them in print. I think that's what really matters.

Also, it helps to remember that the goddesses who write sentences that make you squeal in awed delight are also cool people who went through a dressing-like-Buffy phase. (NB. I might still be in mine....)

In conclusion, yay booksignings!

*Anna couldn't come in the end, but there is a very funny story about her in re: SRB. When  Friend Tess and I went to the 2011 Diversity in YA panel, I overheard a group of girls talking in the ladies room. They were freaking out about meeting Sarah, because they'd made her a hilarious, embarrassing video online. Fast forward to Kathleen introducing me to her high school best friend Anna, who is now starting our program. We flailed about authors we like and events we'd attended and lo, she was one of the girls in the bathroom. TL;DR My roommate's high school best friend and I almost met a year ago, before either of them had started Simmons.

**We are going to have joint signings where we talk about living together. Allison will be our handler. Kathleen has said she will not act out my books Sarah Rees Brennan style, but will permit me to do dramatic readings of 80s parenting/disability books. DON'T THINK I WILL FORGET THIS.

Opportunity Taking

Last February, I was an idiot.

One evening, sitting in my tiny-tiny dorm room, I randomly went on the website of Jack's Mannequin, the band of Andrew Mcmahon, my favorite songwriter. He's in the playlist for everything I write. He's my ringtone. I am quite into him.

The band was in Boston. That night. Playing at House of Blues, which was .7 miles away from my dorm. I'd walked it before. The show started in an hour.

Did I get off my butt and head down there to beg for tickets? No. There wasn't a way to check online for tickets. I'd had a bad experience at HoB before. I didn't want to walk. (N.B. THERE WAS A BUS). But really, I was just going through a time when I let opportunity pass me by, because I was not mentally in a good place. I was convinced Things Wouldn't Work Out or Be Worth It.

Two days ago, I got an email about a benefit concert (in LA) that would "be the last Jack's Mannequin show". The band is splitting so Andrew can work on other things. I'm excited to see what that will be, but I will always, always regret not walking those seven blocks to try to see hm at HoB.

The thing is, you can't always recognize opportunity. The right way to spend an evening might be watching Buffy with your roommate instead of responding to that facebook event invite. But given the choice between nothing and something, I've always believed in something.

I spent my backpacking weeks jumping from event to event, seizing opportunities. It's time to reclaim that part of myself.

Political Patter

Saturday night I went to a Dar Williams concert in Davis Square. She played wonderfully, of course, etc., but her opener got me to thinking. She was, apparently, a pretty well-known folk singer/songwriter in her own right, and none of this speaks anything to her songwriting abilities. Also, I'm a bleeding heart liberal so my opinion herein might not even be important.

Only, between every song some part of her patter had to do with being here for a "Scott Brown benefit" or some other joke about the conservative republicans. I suppose she knows her audience, but Dar's music isn't overwhelmingly liberal (though she is), and I can't help but wonder if maybe this wasn't the place for it. Fine, the majority of the audience were probably Cambridge hippies, but who knows, maybe they brought their right-leaning friends for a night of pretty music.

It just felt odd to me. I'm all for artistic license within a song, because the music is what we came for--but I think patter is such a great opportunity to delve under the music, and the artist. I don't think it's the time for superficial political jokes when, really, the whole world has kind of turned into a superficial political joke.

Friday Five!

1. We're having a party tonight! My roommates and I are putting on our housewarming shindig that's sure to be the first of many get-togethers. I have to admit it's kind of bizarre to plan for a party that doesn't involve just moving the coffee table and turning up the stereo. On the other hand, in undergrad we used to put a lot into planning/decorating/dressing for the massive blow-outs, but now work still has to be done in the day before the fun.

2. I'm super-excited about next Friday, because there is going to be a massive YA author event in Burlington, MA. Sarah Rees Brennan, Holly Black, Libba Bray...it's going to be FABULOUS. I found out about it Tuesday night and immediately picked up the phone.

Me: Hey, friend, remember how we were going to go to the Brookline Public Library to go see Libba Bray and you'd probably use your car for that?
Friend: No, I thought I'd use my horse.
Me: Right, so, but, we're going to go to Burlington instead and take people and it's going to be great!

3. Speaking of Sarah Rees Brennan, I am halfway through Unspoken. (I'm SAVORING IT, okay) and I keep having moments where I'll think something like, "Oh, Napoleon complexes aren't real, silly Love Interest." Or "How very Pyramus and Thisbe" and then the character says it. Clearly SRB and I think the same way. Clearly.

4. Yesterday, there was PitchMad, a twitter pitch contest. I found out about it checking my feed before I got out of bed (I am not a twitter addict, I am a person who dosen't like getting up) and by the end of the day I had two requests. I adore the Internet!

5. You will notice the lack of thoughts about the iPhone 5. I wasn't impressed. I'll upgrade to get a 64GB device so I can stop carrying my phone and iPod around like a tool, but basically meh.

Massachusetts Avenue: Of Life, Love and Amanda Palmer

I've kept the promise I made two years ago when I first discovered Harvard Square, the day I saw Amanda Palmer in Cabaret. I live off Massachusetts Avenue and finding an alternative's a little hard to do. (Storrow Drive is pretty in the fall). 

Yesterday, I walked home from Harvard Square for the first time in a few weeks, ignoring the twinges of pain that were weaker than the ones I experienced for most of the summer summer. There's something in that anyway, mixing pain with memory in the way of the song. I strolled down six blocks of Massachusetts Avenue, blasting Amanda's song of the same name, which finally has a studio recording on her new CD Theatre is Evil.

That song---and the entire album--sums up my Bostonian existence. Meow Meow opens the album in German, an echo of Amanda's role as the MC in Cabaret, the performance that transformed the way I think about art. It was my escape from the world and a reminder to tune into the world. Meow played several of Amanda's Late Night Cabarets, the post-performance concerts that were my only social engagement during those tenuous first few months in Boston. I didn't have much, living alone in a tiny dorm room, but almost every Wednesday night I didn't have to go back home at all.

There's more to the album than memories, of course, but every time I walk down Mass Ave I remember those nights in the darkened club, sitting a couple of tables away from Neil Gaiman, sipping red wine and being alive. Being hopeful.

One night, I contemplated not leaving my room for the show. (Do you want to go back home, check your messages and charge your phone?) I was writing. The words were flowing. I had my own art to work on.

Which is exactly why I had to go. That manuscript, which I hope very much to see in print someday, if only so I can list Amanda (and Neil) in the acknowledgements, is infused with the joy I absorbed that fall (Do you remember loving me more than I could be loved?). It's set partially in Harvard Square, the place I explored, and adopted, during long evenings spent waiting to enter the Oberon. It's about music, and living statues, and Jacques Brel, and drag queens, and acceptance, and art, and hair dye, and love, and not a little bit of wine. And I hope that one day someone will read it and think, I know that feeling. I remember that. I covet that.

But this post isn't about my manuscript. It's about the way we need to experience art to create art, and the way one song--one note--can bring back the joy and love of a moment.

I don't need lyrics to tell me I don't have to be alone anymore. I have friends. I have a life I don't need to escape. I've cried in the parks, and walked through the cemetery, and nearly been run down by trucks.

And every time I walk home, I pass the spot that holds my most vibrant memories and remind myself what I want to do, and whom I want to be.

"There was a cabaret and there was a master of ceremonies and there was a city called [Boston[ [on a street] called [Massachusetts Avenue]. "

Tomorrow

It's easy to live in anticipation of things. For instance, I want to get through today, because tomorrow will bring Amanda Palmer's new CD and Sara Rees Brennan's new book. I have been super excited for both of these things all summer.

This weekend, my roommates and I are hosting a housewarming party. Saturday is a Dar Williams concert. At some point in all of this, I need to go see Perks of Being a Wallflower.

With all these cool things in the future, it's hard to stop just looking ahead. Trying to "get through" one thing and onto the next. But that's also a recipe for missing out on the little things every day brings.

And I think being too focused on the next step in publication can go the same way. One day, I'll wake up and realize I've got an agent, or been pubbed, or whatever the milestone is. But I'll miss the days spent yelling at characters no one else knows about, while my roommate does the same thing a few doors away. I'll miss this time.

So I'm going to try not to wish the day away.

Not going to be easy. Unspoken comes out tomorrow, y'all!

Friday Five!

Been a while, hasn't it?

1. I read Gilt last night, a novel set in the days of Henry VIII, about a friend of Catherine Howard. I really enjoyed it, but this morning I began to wonder if I'd filled in details that weren't there thanks to my obsessive reading of novels set in the Tudor period during my childhood. There were no mentions of Elizabeth I, very few of Edward, none of Mary. The political climate was alluded to, but I'm not sure the methods of trial were well-explained. That said, the novel served a different purpose. It read like a classic YA novel, about a girl trying to find her way in her world, set hundreds of years ago. Maybe it didn't need the sweeping political background.

2. Classes are going to eat me. I know i keep saying it, but I just put all my assignments on my calendar and...erp....The worst of it is, I brought it on myself. I'm doing an independent study. I created the list of things I'l turn in, and the dates they're due, and---It is all my own fault. All of it.

3. I've been getting physical therapy for the past few months, and I can say that there is nowhere--NOWHERE--better for people watching than outside or in the waiting room of a rehab hospital. From the moms comparing their sons traumas, to the women having the "no, YOU'RE inspirational conversations," it is all wonderful and priceless.

4. Yesterday, I was reunited with my one true love....the mozzarella sticks in my school cafeteria. They are magical. Also, the phrase "I don't have a meal plan" is the most bittersweet phrase ever.

5. This is an old video, but I hadn't seen it, so maybe you haven't either.

Breathe in Peace....

Breathe out love. It's a saying I picked up from one of my coworkers this summer, and I'm latching onto it. The semester starts tomorrow, and even though I'm only in one class and one independent study, I feel completely overwhelmed already. I'm sure this will subside at some point. We'll see.

I'm shifting my focus for the next two weeks toward schoolwork to make sure I have a handle on this. The writing guilt is, thus, kicking in big time. How are you going to be a writer if you're not writing? asks the voice in my head. But what about all those writers who raise kids/have jobs/etc., they don't take time off to focus on other things. It's a balance! 

And I get it. For years, I've carved out that hour of writing per day. I'm not saying I'm giving it up. I'm saying there are other things that need to be done first. My brain will always be soaking up information to be tucked into my writing somewhere, always be annoyingly giving me story ideas in the middle of class. I have a revision out with an agent. There is progress being made brain, okay???

Breathe in peace....

Anywho, as for this blog, I plan on making Wednesdays after this "Disability Book Days" partially to get back to the mission statement of writing here (like I had one) and partially because that's a thing I'll be thinking about a lot anyway thanks to my independent study (on disability in children's lit).

So that's my stress. And my plan.

What's wigging you out this month?

(Breathe out love)

Story Time!

I don't have enough thoughts to make a Friday Five today, but I am putting my best foot forward toward keeping up a blogging schedule starting....now. Thus, instead of a Five, we are going to have Friday Story Time!

Once upon a Friday, two weeks ago, I stood outside of the Center for Independent Living office, waiting for the paratransit company (known as The Ride in Boston) to come get me. I leaned against a mailbox, my backpack at my feet. I'd just finished instructing interns at one of our weekly job skills workshops and wore a skirt and nice top, unlike most of the people in the area who embraced casual Fridays.

An older lady came around the corner. Typical Bostonian woman with well-cropped white hair that did not try to reach for the heavens, in the way of the southern women I grew up around. She strolled down the street clutching her Macy's bag, but stopped when she saw me.

"Do you need help, dear?" she asked.

With what, existence? I thought, followed up by bewilderment about why she'd asked me this question. The area definitely had (has) its share of homeless people, many of them with disabilities. Last time I checked, they do not have frappucinos in one hand and an iPhone in the other.

The Ride car came around the corner. I pointed.

"Oh, you're waiting for a ride? Okay."

This is only the beginning of the story. It had been a twenty-four hour period of absurdity, starting with the conversation my morning Ride driver had with the (also older) lady in the front seat. Both of them were respectable, and yet the discussion culminated in his outlining where the strip clubs in Boston were now, as opposed to where they were twenty years ago.

The afternoon's ride driver reminded me of the morning's--glasses, gray hair--and was similarly chatty. He fired questions at me as we merged into downtown traffic. "Is that a Jewish place? It's on Temple Place."

"Um. No. No temple. Kind of like how School Street has no school." I took out my headphones, hoping he'd realized I wasn't in the mood to chat. Sometimes I have really good conversations with drivers. Sometimes I just want to go home.

"Oh. Yeah. Did you watch the Olympics?"

I slid my headphones onto my neck. No message gotten. "Some. Gymnastics."

"Follow the Red Sox?"

"No."

"If you don't mind me asking, what's your condition?"

I fell silent. It was not an unfamiliar question, but I assumed he'd had disability etiquette training and rule one is that you DO NOT ASK THIS QUESTION.

"Um....It's a genetic skin disorder." (NB. I don't actually know if it's genetic. But I had no idea what to say.)

"Oh. Okay. So it's not elephantiasis then?"

"No."

"Oh. Do you follow the Red Sox?"

I'm not sure what went on in this guy's head. I got the impression that he might be somewhere on the autism spectrum, because I associate this kind of rapid-fire personal questioning with a few people I know who are. And it's not really the question that bothered me, it's the context.

Ride drivers provide transportation for people with disabilities who cannot always ride the T. Our expectations for the experience, therefore, should not be significantly different than on a train or a bus. Get in, maybe pick up some other people, maybe take them home first, go home. I don't expect to have to field personal questions anymore than I expect a woman on the street to assume I need help when I'm not showing any signs of distress.

I went through the motions of calling The Ride to report the incident and discussed it with my supervisor at work who helped me get The Ride in the first place.  She was very apologetic, and at first I asserted that I wasn't bothered by the event, but I worried that someone else would be if he repeated it.

Really, though, it does bother me. My disability affects my life every day, in ways I can't enumerate. However, I forget that it also affects people's perceptions of me. I like to think that in accepting paratransit, I haven't forfeited my right to not be reminded of that.

Maybe I'm wrong. Either way, the whole event was the most absurd thing that happened to me that weekend, which is saying something because the next day my roommate and I went to see Harry and the Potters...

Elevated

I'm afraid of elevators. Not in any phobic sense--I use them nearly every day, no time to be phobic--but that's the problem. Statistically, I will probably get stuck in one someday. I use them statistically more than most people. Also, I have a tendency to use them in places where most people wouldn't. It's one thing to get caught in a car with seven people in a well-staffed building in Manhattan, You've Got Mail style. It's another to listen to the slow groaning of the lift in my apartment building reluctantly taking me and my bag of books to the second floor.

Recently, my roommate and I had a close encounter of the elevator kind. We went to see The Potter Puppet Pals at a venue in Central Square, and the bouncer asked if I'd like to use the elevator.

"Sure," I said.

He opened a door behind him, leading to a tiny room with a button panel on the wall and a big red button next to it.

"All right," he said. "It goes slow, but it goes. I'll control it from out here--Oh! Don't touch that button."

Kathleen leapt way from the big red button, and I began to reconsider this whole idea. We'd both been watching a lot of Buffy lately, we did not think this would end well.

"Okay! Oh. It's not. Here--," the bouncer reached in and fiddled with the red button we'd been instructed not to touch.

"Stairs! We'll take the stairs!"

"Are you sure? It's--"

"Sure, very sure!" To cement this assertion I exited the elevator before his red-button pushing sent us plummeting to our dooms.

I had the choice. The same way I usually avoided the similarly terrifying elevator in my undergrad academic building. The way most able-bodied people do when faced with a climb of less than a few stories.

Many people don't. For many people with disabilities--myself usually included--elevators aren't a convenience. They're essential. And having a horror-movie-esque room that descends is not enough. Having a creaking car with a phone I'm not entirely sure would contact anyone isn't enough. Not having an alternate route to downstairs seating because you have seating upstairs isn't acceptable--I'll go to a Panera with an elevator (granted, you have to go to an adjoining building, but still) before I'll go to a coffeeshop where I'd have to carry a drink, my cane and myself upstairs.

At least, though, humanity didn't readily adapt these. Paternoster elevators are a concept I discovered this week reading A.S. Byatt's Possession. Aside from simply being a terrifying idea (video below) they are a prime example of elevator as convenience as opposed to necessity.



What things that are convenient for others are essential for you?

End of the Summer

I had my last day as a job coach today. We had a luncheon for the interns and their supervisors at a bistro downtown, and I said good-bye to my coworkers. Most of them I'll definitely keep in touch with, but the program is over. I'm going home for a week, and then it will be time for classes to start. I'll go back to student life.

I got a lot of writing done this summer. I revised two manuscripts--one of them an R&R--and prepared to query a third. This more than meets my overall goals, but it still feels weird that the three months have passed already.

This semester is going to be intense. I already have two long emails from my advisor about my independent study, and we've been assigned readings for my other class. I believe a writer should always be writing, but my goals for the next couple of months aren't manuscript related (unless I get revision requests!). Rather, I want to hone my craft. I'm done with the MFA coursework portion of my degrees, and thus have to self-direct writing studies. It'd be pretty easy to never pick up a craft book again. I want to make an effort to do the opposite. Pick up my craft books, do the exercises in them.

I want to learn how to form better prose, something that isn't talked about as much in instructional books or blogs. I'm looking for people who want to make this a goal too, so we can exchange writings and critique, if anyone's interested!

What about you, what are your fall goals?

My First Wrock Concert

On Saturday I went to see Harry and the Potters with my roommate. The Potter Puppet Pals also performed.

We live in a world where so-called grown-ups make their living singing songs and performing puppet shows about a fictional character. I cannot express how much I love this.

Roomie and I are planning on going to LeakyCon next year, come hell or highwater. It's in Portland, which is not an easy trek from Boston, but I'm determined that we'll figure it out. There's something incredibly amazing about being in a room full of people who love what you love and are willing to sing about it.

Living in Holland

Recently, I read a memoir written by Kelle Hampton, who is the mother of two gorgeous little girls, one of whom has Down syndrome. I've been a fan of Kelle's blog for about a year now and adore watching her girls grow through the beautiful photographs she posts.

On both her blog and in her book, Kelle is incredibly honest about the emotions she felt around her daughter Nella's birth. She has since come to terms with Nella's disorder, and I very much admire the way she is raising her little girl. However, as a person with a disability I always find it incredibly hard to hear about parents who talk about having to reconfigure their dreams for their child, or accept their challenges, or other euphemisms for this. Often, people reference the infamous Welcome to Holland essay, which is a narrative that compares having a child with a disability to packing for a trip to one country and landing in another.

I've never been a parent expecting an able-bodied child. I've never been an able-bodied person. And every day,  I come to terms with the limitations of my own disability. But I've never had to know my parents were disappointed or upset in anyway when I was born. I'm adopted. They knew what I was getting into. My entire life has exceeded expectations based on what they knew the day they got me. I cannot imagine coming across a book or a blog where my mother admitted to being devastated at my birth for whatever reason.

I don't fault Kelle for her honesty. I think it's brave of her to admit to her experience, and it's important for other people to be open. Part of me, though, just wonders what happens if Nella reads her book ten or fifteen years for now. No matter how little impact her disabilities eventually have on her life, I can't help but wonder how that would affect her--how any child is affected by knowing that their parent was upset at their diagnosis--at a part of them.

I don't know what the answer is here, but it's something I wonder about.

My Gimpy Life Premiere!!

You guys, I have been so eager for this project all year. It's a webseries created/starring Teal Sherer all about being a Hollywood actress who uses a wheelchair.

Teal went to my alma mater, graduating two years before me. I discovered this after seeing her role in The Guild and wikipediaing her. We've chatted via email about about being artists with disabilities, and I'm super excited to share her work!

I watched episode one today and totally coffee spit-taked. Oh how I know "the stairs are fine...."

Watch, like, subscribe, promote!

Growth

I'm back from Youth Leadership and have of course spent the past few days fighting off the camp equivalent of con-crud. It takes me about as long to get over the exhaustion as it takes to cause it.

This year, my body decided to be my enemy during camp instead of just after it. I sprained my foot four days before leaving, my legs got more swollen than they had been since my last surgery--causing me to panic, and the intermittent hip pain I've been dealing with all year reared its head whenever these other issues weren't driving me nuts. All of this made me tired and annoyed.

It was not my finest year.

It can be hard to admit to your own pain when you're surrounded by people who--potentially--have it worse off. But pain, like joy and fear and sadness, is relative. One of our sayings at YLF is that the only normal is "normal for you." Normal for me the past few weeks has been an incredible amount of happiness and possibility. I wanted so badly to share that with everyone at YLF--because let's face it, I'm not usually the cheerful one. And it made me angry that I couldn't, that the pain and worry overshadowed the excitement. I didn't want to burden anyone else's week with my problems, especially since I was staff, not one of the kids we were there to take care of.

Here's the thing, though--the people I was with? They've seen my ups and downs. They've helped me through the petty trials of adolescence and advised me through the insanity of college.  They cheer on my every success and support me after every failure. They're not going to begrudge me one rough year.

And I've learned that I can't pretend that whatever issues I have with my body two days before camp are going to go away during the week. No part of life is a vacuum. I'll be better prepared to care for myself next year.

And if I'm not--if something else is going on that requires me to commandeer one of the spare wheelchairs again, there will be plenty of people to help me steer.

Mostly because they know that the sixteen-year-old who started going to YLF would never have admitted to needing a chair if her life depended on it.

The Most Wonderful Time!

It's mid-July! Know what that means? YLF!

YLF is the Youth Leadership Forum in Tallahassee, FL where I volunteer. For four days, I turn my writerly brain off down (let's be honest) and hang out with awesome teens and other volunteers who I've known for years.

I love hanging out in the FSU dorms ordering Hungry Howie's until the wee hours, but more than that I love getting to be a role model for the delegates going through YLF for the first time. Some of them have no idea that they can achieve the same things as their non-disabled peers. Sixteen-year-old me would definitely have been pleased to know that in seven years she'd be chilling in this gorgeous Cambridge apartment.

I'll be mostly off-line if last year's wi-fi is anything to judge by, but I'll let you all know the highlights of the weekend when I get back!

Solidarity

More than ever lately, I've become a girl who wears many hats. I do disability advocacy by day, write by night. (Which is weird, because during the semester it's the opposite). What amazes me is how many people I have supporting me in both areas.

Next week, I go to Tallahassee for the Youth Leadership Forum where I've volunteered since the year after I attended as a delegate. These are the people who have always listened to my disability rights rambling and who have watched me grow every summer. Now, I also have an awesome group of co-workers who talk the disability advocacy talk, and I'm always excited to talk with all of them.

One of my roommates in Fabulous New Apartment (henceforth: Ravenclaw Tower) is also a writer. We've both been amazed by how nice it is to walk into the living room with your laptop and see someone else already typing away. We can talk about plot and characters like they matter, and no one thinks it's strange. (Except, perhaps, Third Roommate, who is learning our ways).

Yesterday, my writing group met up for the first time in months. It's a few of us from my program, but we've been familiar with each others' work in all stages, so it's fun to write with them and see what they're working on.

Sunday night, I went to dinner with Matthew McNish who was visiting from Georgia, and a few other Massachusetts writers. There's something amazing about meeting people you've only known on the internet, and more than that about realizing how small this world really is. One of the attendees was Anna Staniszewski, who wrote My Very UnFairy Tale Life, and is also my writing instructor. Also, Kristen Wixted who I'd connected with earlier in the week via the Authoress's Crit Partner dating service. This universe is really small.

Anyway, my point is that it's so much more fun to have people around who share your passion, whatever that passion may be. It makes this path just a little bit easier to tread.


Pictures from Sunday. I look a mess.

Writers Poking Lizards in Eyes

Heather Kelly, Anna Staniszewski, Kristen Wixted, Maddy, Matthew McNish, Sarah Fine and me!

Something to Blog About

It's funny, last summer I kept up a very regular blogging schedule, but I wasn't really doing anything. I spent the summer at my parents' house reading and having surgery. I did see Taylor Swift, so that was something, but mostly I wasn't doing much but reading and writing. This summer I'm working, writing, going to dinner with friends, watching Buffy with my roommate and generally doing things.

One of my writer friends and I have discussions about the writing vs. living balance. We both think that living life is a necessary part of writing, the writing brain is always working etc. However,  I don't let that be an excuse not to write. I make sure I spend decent chunks of time working on my current project no matter what else is going on. Other things fall to the wayside. Other things like this blog. I'm going to work harder to make sure that doesn't happen, but I don't regret letting whatever spare brain energy I have at the end of the day go toward working on a novel as opposed to a blog.

It's how I maintain the life/writing balance. Or try to, anyway.

It's Not "If"

Today, the intern i'm mentoring told me he wants to find out "if" he can work. I immediately told him that the word isn't "if" it's "how."

The thing is, this is a question I've asked myself a million times. if I can work. If I'll ever get published. If this illness or that wound will get better. Telling my intern that he was using the wrong word made me realize that I"M using the wrong word, too.

How means that you have control. How gives you a to-do list to check off. It encourages you to do your best, rather than leaving everything up to The Powers That Be. And so even if one "how" doesn't work out, there's always another.

Just a little reminder on a Wednesday morning.

You've Got Change

I woke up this morning at 5am and couldn't go back to sleep. So, I rented You've Got Mail on my iPhone. Like you do.

I'm not sure why my comfort movie is a film that is a two-hour advertisement for an internet service provider no one uses anymore. You've Got Mail is only fourteen years old, but world has changed so much. The war isn't about chains and indies anymore. Things that changed the face of publishing--Amazon, ebooks, Harry Potter--don't exist yet in the film.. Sure, the inspiration for Fox Books (Barnes & Noble) still provides challenges, but it's certainly not the untold champion anymore.

 Only Starbucks is as ubiquitous on the Upper West Side today as it was shown in the movie. Even Kathleen Kelly, Meg Ryan's character, the defender of indie purchases her morning coffee there. Surely, the store she stops out bought out an independent café, but she doesn't consider this. As is proven by the end of the film, she cannot stop progress.

 The love story between Joe Fox (Fox Books) and Kathleen (The Shop Around the Corner) is supposed to be Romeo-and-Julietesque. However, I find it bittersweet that, really, he--representing the corporate conglomerate-- gets it all. Progress, the film states, wins.

I do love that the film is a love letter to New York, where I want to live some day. It's a city for the generations. Of change, and of tradition.

And, here's the thing, in the non-fictionalized city, The Shop Around the Corner still stands. There is a children's bookshop, Books of Wonder, around the corner from the 18th Street Barnes and Noble. The independent bookstore isn't dead. I like to think it's resurfacing. Sometimes tradition can win over, something I think the film tried to portray, but forwent in favor of the plot arc.

You've Got Mail came out when I was nine. I remember seeing it in theaters (Mom is a big Sleepless in Seattle fan), but I really fell for it while I was studying at Oxford. I loved the anonymous online letter writing, something I don't think could happen on today's Interwebs. It takes me back to the dial-up days (oh the nostalgia in that sound), and makes me wonder if I have modeled my life, my children's book love, on Kathleen. But most of all, I think it gives hope that in these days of exponential progress--while I play spot the out-of-date tech in a fourteen-year-old film--there could be someone out there to guide me. To be a constant when nothing else is.

F-O-X

Accessibility in the Literary Sense

In this week's Thoughts from Places video, filmed mostly at Book Expo America, John Green quotes fellow-writer MT Anderson. Anderson defends intelligent characters in literature, which is a topic I'm passionate about.

I've praised John before for making it okay to write about intelligent characters. Some people argue that there isn't a shortage of smart YA characters--I've been told that there, are, in fact a disproportionate amount of them. In writing classes and literature classes, I've seen characters who use words like "bucolic" and quote Shakespeare be called out for being "inauthentic" or "inaccessible" or "unrealistic".

And maybe there are a lot of "average" teens reading. And maybe they need to see themselves in books they read, the same way "everyman" needs Updike's Rabbit.

But here's the thing: Smart teens exist. Teens who read John Donne, and do Calculus, and obsess over Neil Gaiman. They are out there, they can appreciate references to these things in their books. And authors can write to them, they can write about them, and they shouldn't be criticized for wanting to, just because not every tenth grader would appreciate a metaphor mentioning Oedipus. Some will.

My friends and I would have.

We wouldn't have appreciated a sports reference, but some readers will. And it's okay to write a book that some people will appreciate and not others. "Adult" authors do it all the time without being unduly criticized for it, YA authors need to be allowed to as well.

Disclosing (My Failure as a Blogger)

I have NEVER been this lax on blogging, but it's been a crazy couple of months. I finished my second year of grad school, went home for two weeks, did a family road trip up to Boston, moved into a new apartment and started my summer job. I'm still in the throes of starting up this new(ish) life, but I want to make sure blogging is back in my routine.

So, let's talk about something I've been thinking about. Not to give too many details, but this summer I'm working with a program that helps youth with disabilities attain internships, and learn to advocate for themselves in the workplace. I'm a job coach--meaning I'm the one who goes to work with them in the beginning of the program and helps them figure out what adaptations they need to do their best work at the job. Job coaches also help the program supervisor with materials for the mandatory weekly workshops the interns have to attend. Most of what we're doing is that until Boston Public Schools get out next week.

Yesterday, we were working on the module on disclosure--telling employers/colleagues/friends about one's disability. This is a difficult thing for me, not because I'm hesitant to disclose. In fact, the opposite. I can't think of a time when I didn't readily admit to being disabled, in life or online. In a book I was reading today (one of Lennard J. Davis's tomes on disability studies) he mentions that people with disabilities do not have to identify as disabled online, but it never occurred to me not to. The effect my disability has on my life has always seemed too steady and influential to deny it. I've never been aware of stigmatization, either. For instance, I've always had to sit in the front row thanks to my low vision, but I never felt I was treated differently because of it.

But then, I'm the type of student who would have been in the front row anyway. Would things have been different if I'd have preferred to be in the back, and known that admitting to my visual impairment would mean being told to sit up front? There have been times during my secondary education when I've chosen to compensate in order to sit with my friends. (Often these days I won't be able to see no matter where I sit, thanks to classroom configuration, so I ask a friend to tell me what's written, or trust that the professor will repeat what they've copied onto the powerpoint).

Also, I've never, ever had a chance at "passing" (denying disability), so I don't quite understand doing it. All the literature we've read on disclosure for work implies that the reader will err on the side of hiding disability. In my opinion, that kind of attitude leads to shame and self-sabotaging attempts at compensation.

And maybe I need to think harder about that the next time I think I can deduce what's on the board.