LeakyCon

LeakyCon. Until a few days ago that term was abstract to me. I spent most of my teenhood immersed in the Harry Potter fandom, but had moved to the periphery by the time the cons started emerging. College took over my time and, I admit it, television shows took over my fangirling. It wasn’t until I became a nerdfighter and a Maureen Johnson fan that I began to hear about LeakyCon, with its multifandom appeal and literary focus. Last summer, a ton of my favorite authors, bloggers, and webvideo creators attended. Meanwhile, I moved in with a fellow HP fangirl, and she took me to my first wizard rock concert.

“You know,” I said one day, when tweets from Chicago were flooding my timeline, “We should go to LeakyCon next year.”

Reader, we went.

It still surprised me that we followed through on an idea hatched before we found out the con would be happening across the country. I’ve made plenty of plans to travel with friends that haven’t panned out. This one did. In spite of inconvenient summer class scheduling, new jobs, and my ever-evolving physical challenges, we made it to Portland. And it was incredible.

I’m not sure I’m by nature a con person. I’m not fabulous at making fast-friends with groups of strangers, and because my mom ran most of the conferences I went to as a child, I always want to be involved behind the scenes. Sitting in convention center chairs as a participant is strange to me. It feels strangely passive. It lacks intimacy. Luckily, LeakyCon is about much more than the panels. It is about more than the Quidditch matches, or the author signings, or the exhibit hall. It’s about more than Buffy, Doctor Who, The Lizzie Bennet Diaries, and even Harry Potter. It’s about more, because that’s the point. It is more, just like every fan is more than her house, his age, their ship.

My roommate is not a nerdfighter (yet). I’m not hugely into wrock. Neither of us are massive StarKid fans. And we both had an incredible weekend. I got to thank people whose creative work has gotten me through this year, which has—for many reasons—been one of my more difficult ones. For some of that time, there were days when all I could bring myself to do was watch The Lizzie Bennet Diaries, and Saturday night I got to speak to the cast and hug two of the women who made me laugh and cry when nothing else did. I danced with the show’s executive producer, took a picture with Hank Green, and danced to “Party in the U.S.A.” for the first time since I graduated college.

There are a lot of amazing things about this. There is the fact that nothing hurt when I jumped around the dance floor. That I got to speak to people who have inspired me creatively and emotionally. To people whose face I see on my computer screen every night, but who had never seen me. That my roommate and I got to have fun together indulging our fannishness with abandon. But what was most amazing to me was seeing the other people on the dance floor last night. The Esther Earl Charity Ball is the prom of LeakyCon, except far better than the prom most of the attendees probably had. Amongst the crowd there were moms with their ten-year-old boys. Girls dressed like witches. Guys cosplaying The Doctor. Teenagers who had probably never heard a Katy Perry song. They were all on the dance floor having fun, in their way. And that’s what LeakyCon is about: having fun, in your way. Whatever that way is, as long as it’s awesome.

Tonight, I am back in Boston, unpacked. The pain has shown itself. I have a fever. I definitely shouldn’t have gone into work this morning an hour after landing, but I regret none of it, because my weekend was more than amazing. It was magical.

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. 

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.

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.

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!

Friday Five

1. I have one paper standing between me and summer. Well, and the whole packing thing that has to happen. I'm going down south for two weeks before coming back up here to move into the pretty, pretty apartment. I'll keep you all updated though. Suffice it to say, writing this paper is really hard, guys.

2. Last night my MFA classmates and I had our final mentorship readings. I read from Ghost Light, the manuscript I worked on with my mentor this semester. It went really well. Interestingly, trends don't just happen in publishing. They happen in confined spaces. We didn't have classes together this year, and yet there was a definite pattern of ghost stories in our works. Also foxes.

3. A week ago, I volunteered at the Federation for Children with Special Needs annual gala. I've done various things for the Federation over the two years I've been in Boston--mostly social media--but I came in helping to organize the silent auction for the gala. One thing I thought about this year while I was there, was the way in which advocating for someone (a child) is different than advocating for yourself. Not only is the terminology different. The way of seeing the world. When you've grown up with a disability, you don't have anything to compare it to, and that's different from the narrative one usually hears from parents. Not good-or-bad, just different.

4. Tuesday, I signed the papers for my summer job. I'm super oh-my-goodness excited about it, and about working in downtown Boston. Some of it can be sketchy at times (where isn't?) but the office is a block from the Common, which is lovely in summer time!

5. A piece of my childhood. I got introduced to The Brady Bunch during this summer of Brady, and occasionally still get this song stuck in my cerebral jukebox (it's a scary place)

They're Not Standing. Deal With It.

Ladies and Gentlemen, I have never experienced an hour of television more full of fail, and I watch Ringer.

Glee has never done well with disability. I've posted about it here and here. I really thought they had the chance to improve now that they've put head cheerleader Quinn Fabray in a wheelchair, but in the first five minutes of today's episode, they managed to ruin all chances of redemption. The episode opened with Quinn and Artie--Glee's token character in a wheelchair--singing "I'm Still Standing." This maybe Glee wanted irony here, but their failure to deal well with disability up until this point means they haven't earned it.

They then ruined any chance of doing a newly-disabled story in a unique way by having Quinn explain right away that her spine will heal. Whether it does or not, Glee is embarking on a cliche. Quinn's attitude of "I will walk again!" is not unrealistic at all--but Glee's already dealt with this. Artie has spent three seasons longing to walk, making his lecture to Quinn about accepting her situation hypocritical at best. They had a chance to show something unusual for TV--someone accepting physical disability without associating it with their life being over--and they didn't.

Now let's talk about senior skip day, shall we? Again, there is potential here. Going to an amusement park IS difficult if you have a disability. More so if you're there with people who are able-bodied. And the scene with people using wheelchairs shredding it at the skatepark was awesome. Ostracizing Quinn and Artie from the excursion, whether by some plan of Artie's to get Quinn on her own or not? Ruins the potential. Intercutting the scenes and therefore highlighting how excluded the two using wheelchairs are? Even more not okay.

Does it happen? Yes. Does it need to be talked about? Could Glee have covered more ground doing something different? Absolutely.

They handled the storyline with Sue's baby having Down Syndrome well, if predictably. But Sue's character has been built around her acceptance of Down Syndrome. Glee didn't do anything new here, except make it a Very Special Episode by airing it in the episode with Quinn's storyline.

Also, whether Quinn and Artie date, or whether Artie is just crushing all this does is retract all the ground they made by having Artie date Brittney by pairing the two students in wheelchairs for however long.

Book Musings: The Wonder Show

\ The Wonder Show

This book is The Night Circus without the magical realism or Water for Elephants without the tragedy. It's the story of a young girl, Portia, who runs away from an orphan's home to work for a freak show at a carnival. Portia has an interesting story, but what interested me more was the freak show and the history it implies. The book is set in 1939, and it shocked me for a bit that the freak show was around that late.

Part of me is immediately against the thought of people--most of whom would be considered to have disabilities today--being on display. I'm generally pretty anti-staring (see my post The Gaze) but in a way, I've done it. I've been a guinea pig for doctors. And the "freaks" in the novel joined the show by choice, unlike some of their historical counterparts. Additionally, there's a camaraderie between them that I associate with the disability groups I'm a part of. The people in the show are supporting themselves, choosing to exploit a condition they can't control. It's liberating in a way some people with disabilities don't get to experience these days--of course they also have more chances to get typical jobs.

Reading the book, I wondered if I'd be strong enough to do the same thing. (Again, I'm pretty anti-stare). You'd get to travel, though maybe not to very interesting places. I'm glad the idea of people with disabilities being display pieces is generally gone along with the Ugly Laws, but as for as historical perspectives go, The Wonder Show puts a positive spin on a potentially controversial subject. 

Book Musings: My Body Politic

My Body Politic: A Memoir

I'm a little bit obsessed with some of the observations in Simi Linton's disability studies book Claiming Disability, and was very eager to get into her memoir. Linton is a disability rights advocate who has been a wheelchair-user since she was paralyzed in the seventies. I honestly expected to have a little bit of difficulty empathizing with parts of her story, because she had a "normal" body before she was disabled. However, so many of her words resonated with me and my own journey, potentially because she became disabled in her mid-twenties, the age I am now, and faced similar issues of identity.

She claims her disability in a way I'm not sure I've learned to do yet. She disgardes the people-first language I've been trained to adapt, preferring not to shunt disability to the side. She writes of leaning to own being a "disabled woman" in a time when curb-cuts weren't standard. Some of her experiences were incredibly familiar, like when she first went into the Center for Independent Living office in the 1970s. "CIL isn't a place, it's a universe. Entering the door that summer in 1975 I discovered a disability underground." I felt the same way walking into the Boston CIL offices forty-odd years later. Like I'd found a place where I could be reminded that disability didn't make me a patient. It made me a person.


 Sometimes it's hard to remember that the disabled life can be as enriching as it is challenging--and as challenging as it is enriching--and Linton's memoir does that. It's an importnat book, I think, to remind disabled people that we're not alone and to remind able-bodied people that disabled people are complex people. The disability community is widespread, sometimes too widespread, and it's in places like the CIL, and Simi Linton's book, that I can remember how many other people are out there encountering the world in ways similar to the way I do.

Here's the trailer for the upcoming documentary based on the memoir:

Friday Five!

1. There are flowers outside, and birds chirping.

Also it's supposed to snow tomorrow.

I know that's how Boston does things, but it makes me miss my Georgia days. It's pollen-central there this time of year, and already on the crux of way-too-hot, but I miss days of lying on the grass, feeling the gentle breeze and smelling the azaleas. I wish I could live somewhere with a Boston autumn and an Atlanta spring.

2. Due to a change in course schedules, I'm probably going to do my independent study in disability and children's fiction in the fall. Expect a lot of posts about books that are inappropriately titled by modern sensibilities. (I cannot wait to sink my teeth into "Retarded Isn't Stupid, Mom!"

3. My friend Kendra visited all of last week, and we watched approximately umpteen episodes of Gilmore girls. I forgot how much I love that show. I have now made it a goal to finally go through and watch the whole thing--including season six *shudder*.

4. Because it worked to find a roommate: my roommate and I are looking for a third person to sign onto the lease for this AMAZING Cambridge apartment. If you know anyone in Boston/Cambridge/Massachusetts who needs a room, hit us up. In-unit laundry! AC! Dishwasher! Deck!

5. Two of my favorite TV shows (Grey's and Buffy) recently had anniversaries. I only started watching Buffy last year, but it struck me that two of my favorite shows were mid-season replacements. Now I almost never watch those, and it made me think I should be giving more a chance. I just don't have the time to reconfigure my TV schedules come spring....

Guide Dogs Behaving Badly

Today I got treed by a guide dog on the T.

I have a friend visiting me in Boston. We took the subway up to the Commons (the park) today. When we boarded, I noticed a guide dog sitting under his owner's seat. He was very good for the half hour we spent traveling a mile (Oh, MBTA). Then we pulled into Park Street Station. (NB my friend and I ended up separately by a few people, so she saw the following situation from a distance).

The doors on the train open on both sides at this station, and I went right, heading toward the door near the driver so if my cane got stuck or something the train wouldn't try to go with me hanging half way out of it (I think about these things). The man with the dog headed the opposite way. It took a moment for the doors to open, putting me up against the dog.

I am TERRIFIED of strange dogs. But not guide-dogs, in general, because they are not supposed to bother people.

This one bothered. He started out sniffing me. He nudged the cane, which I don't begrudge--I often think strange dogs mistake it for a stick. Then started licking my leg.

LICKING my leg.

I squirmed in the opposite direction, twisting around the pole I was hanging on to (context is everything) practically ending up on the lap of the nice lady next to me. To get my leg out of his reach, I lifted in onto the seat. He opened his mouth, and I really thought he might eat me. (Okay, he was yawning, whatever). Finally the woman on my other side petted him to get him to leave me alone. The doors opened, and my friend listened to me have a panic attack.

Now, I know the woman shouldn't have petted a working guide dog, and that's why I didn't try to do this to distract him--oh, no let's face it I'd never have touched him--but the owner wasn't holding the harness. This is why I think Fido thought it okay to get all up in my business, he wasn't being signaled that he was on duty. My friend pointed out, he had a choke collar. So, that's not a thing you expect to see on a guide dog.

Also, she said it looked like I was going to climb up on the chair. Like a badger climbing a tree to get away from this guide dogs' ancestors. (Do German shepherds hunt?)

I am all for guide dogs in public. His owner was genuinely blind, so it wasn't a fake service dog. But this should not have been a thing that happened.

I got treed like a badger, by a guide dog on the T.

Everything is wrong with that sentence except the prepositions. Everything.

When is Problematic Too Problematic?

I'm revising a manuscript that involves a lot of Shakespeare, and I just had the random thought that it would be an interesting casting choice to have a character in a wheelchair play Richard III. In the text he is described as a "rudely stump'd," "deformed, unfinish'd" hunchback. Having an actor with a disability would be a good way to be true to the text, and it's a complex, intriguing part.

It's also problematic. For Shakespeare, and a lot of other writers up to the modern day, it is easy to give the villan a visible ailment that turns people off of them--in this case a hunchback. Disabled characters are often antagonists, because having an abnormal body is something that automatically--so the thought goes--repulses an audience, particularly an audience who did not understand disability.

At what point do we stop sanitizing things like this to change the image of disabiltiy in the world? Do we cut the lines to appeal to contemporary sensibilities and always cast an able-bodied actor? Or can Richard III be played by an actor with a disability without causing the negative connections?

Just a thought I had.

The Gaze

Mild Spoilers for The Fault in Our Stars by John Green

I am not Hazel Grace Lancaster. She has a certain gracefulness (ha) that I will never have. To illustrate this, I provide the following scene. Hazel is sitting on a bench at the mall when:

"[T]his little girl with baretted braids appeared in front of me and said, 'What's in your nose?' And I said, 'Um, it's called a cannula. These tubes give me oxygen and help me breathe.' Her mother swooped in and said, 'Jackie,' disapprovingly, but I said, 'No no, it's okay' because it totally was..." (46).


I've had my share of encounters with random children. They stare and point and ask their parents what's wrong with me. My mother always encouraged parents to tell their children to ask questions rather than stare, the way Jackie does in this passage.

I don't like that either. Maybe because I moved through my school days with little attention given to my differences by my classmates--and still do--the tendency of strangers to blatantly notice bothers me. In Stigma: Notes on the Management of Spoiled Identity sociologist Erving Goffman quotes a young woman who "suddenly realized that I had become so self-conscious and afraid of strange children that, like animals, they knew I was afraid and the mildest and most amiable of them were automatically prompted to derision by my own shrinking and dread" (17). 


I know this terror. I get it in line at airports. I refuse to go into Wal-Mart. And yet, often, children are staring at me because they like Henry my monkey hat, or my tendency to have pink in my hair. I have become tainted by the ones who ask their parents if I am a monster, who wonder aloud why my arms are like that or who--the one true memory I have of childhood teasing--whisper to a friend "she looks old" while I pass on my way to the cafeteria.

And why? Why can't I accept, as Hazel Grace does, that children are naturally curious? I have a tendency to let my gaze linger on other people with disabilities--trying to figure them out, offer solidarity--isn't this just as bad?

Unlike Hazel, I have no frame of reference to understand life as a child for whom disability isn't a daily thing. I don't understand not knowing that a person may not want to explain their wheelchair, cane, or cannula to you. My immediate thought is that it's not my job.

Until people with disabilities are not an unusual sight out in the world, though, it falls to me. I have to admit, it worries me that even if the day comes where people in wheelchairs do not have to explain themselves to any form of stranger, I still will. But the issues of being one of ten in the world are topics for another post.

I plan to work on it, using Hazel as my guide, but I may never get to the place where it's totally okay.

And maybe that's totally okay, too.

An Open Letter to Ryan Murphy

Dear Mr. Murphy,


I wrote this some weeks back, but held off on sending it into the ether, because I hoped things would get better. 


They haven't. 


I have been a fan of Glee since it aired in 2009, but have always been seriously disappointed in the way the show treats its characters with disabilities. Your storylines dealing with everything from LGBT issues to virginity to teen pregnancy have never forsaken honesty for comedy. They have never relied on stereotype—in fact they’ve gone far in the opposite direction. Kurt Hummel is not a cardboard cutout and never has been.

Yet from his first appearance on the show, Artie has been the nerd in the wheelchair. His relationship with Brittney helped to alleviate this, as well as his directing storyline this season, but I don’t understand why it existed in the first place. I understand that there are teens in wheelchairs who dress as though their mothers dressed them, but this is a stereotype the world of disability has fought against for quite some time. Why couldn’t the boy with a disability have been the bad boy, for instance?

There is also the issue of Artie’s obsession with being able to walk. When asked where he thinks he’ll be in 2030, he says “walking,” and his imagining of storming out of Mr. Schu’s class automatically involves walking. Why is the show so desperate to draw attention to something that draws attention to itself by definition?

But my major problems don’t lie with Artie. While I did resent the fact that Kevin MacHale isn’t disabled, when you had the chance to do some truly world-changing casting by casting an actor with a disability, I understand. I also have come to terms with the filmic justifications for Safety Dance, as well as Brittney’s wish that Artie can walk—as if he’s not enough without it—but the character of Becky Jackson is the one who most bothers me.

Yes, often students with disabilities are the managers of their school sports teams, and this is considered inclusion. But on a TV show you have the chance to provide a larger-than-life example of inclusion. If Becky were a full-fledged cheerleader, like the young woman with dwarfism featured in the Glee film, think of the power this would give young girls with Down Syndrome. She might not be the most physically-able cheerleader, but she could be something more than Sue Sylvester’s lackey, one who was unjustifiably demeaned by being shunted into the role of a dog on the Christmas episode two years ago. I understand the comedic homage to The Grinch, but I had never seen such an offense for the sake of comedy in the show before or since.

Her brief attempt to date Artie this year could have been done well, had his reason for not wanting to date her explicitly been her Down Syndrome. If there had been a hint that this conclusion was a misunderstanding on her part, the episode might have been far more effective. Lest you think I completely disagree with her portrayal on the show, her role in The Spanish Teacher was wonderful. Kudos for that one.

The two young women with disabilities featured in the Glee Concert Movie were such wonderful examples of achievement and honesty. I hope to see this attitude portrayed on the show in future. I know Glee can handle tough stories with love and grace—I just it wasn’t reserved for every character except the ones with disabilities.

All the best,

Chelsey Blair 

PS. I hope some positive disability-related storylines will come out of Quinn's accident. But if not, I may be storming out, Artie-style. 

Say No to the R-Word

Today is Spread the Word to End the Word. I posted about it last year, so I'm not going to repeat myself much, but for new followers:

Today is the day we take a stand against the word "retard," a slur that insults people who cannot always fight back. I see it frequently in YA fiction, used not to make a point about the way in which we are flawed human beings who sometimes use words without thinking about the, but because authors know teenagers use the word and want to sound "authentic."

This is more than not okay. It's lazy writing.

For more information about spread the word to end the word, and to sign the pledge letting everyone know you are aware that the r-word is not okay, please visit www.r-word.org

To win a copy of Kirsten Hubbard's Wanderlove, comment on this post. Winners will be chosen next Tuesday.

Minority Report

I've been thinking more lately about what it means to belong to a minority group.

As a person with a disability, i consider myself to be a part of a social minority. It's harder to see, especially because the ideal model for educating people with disabilities is for them to be mainstreamed--put into classes with typically developing kids. Thus, you create two groups, the mainstream kids and the ones who have to be in ESE throughout their education. They're often the ones who get involved in organizations that find jobs for people with disabilities, and host events such as dances and parties for their clients.

On the other hand, you have mainstream students who have been "successful" out in the world and who could look with scorn on those organizations, because they don't think people with disabilities should have to have their own dances and parties, or need someone else to find their jobs.

But then they realize that during the time they spend with other people with disabilities, they feel safe, and they dance freely, and it's okay--because they also have their mainstream lives. How is this at all superior to the other way of life? It's not.

But I think the answer to all of this ends in the choice. If an adult can choose where they work, who they work with, what function they want to go to, then they can move in a world with both typically developing people and those with disabilities. They can learn to feel safe both places. To connect with people in both places, in different ways.

I'm not sure we're they're yet....

I Don't Want to Go to Denver!

Actually, I did. Want to go to Denver.

But the title is a line from an Eddie Izzard sketch that I couldn't get out of my head on the plane.

I went to Denver to give a presentation on inclusion at the a conference, and it was so much fun. It's something I really love doing, and people seem to like hearing my goofy stories.

That said, it wasn't until I stood up there narrating my life that I realized exactly how many of my tales had "and then I went to the doctor/ER" in the middle of them. In fact, so does this one.

I scratched my eye at some point last week, and by the time I got to Denver it'd gotten way obnoxious. Mom and I had to go to a walk-in clinic our first day there, and then a specialist because I'm too complex for doctors at a walk-in. (I have a detached retina in that eye, and they worried it could have been more than a scratch. It wasn't, but safe>sorry).

I did get to go to the Denver Art Museum, and to Boulder to visit my college professor/mentor who now lives up there. I also, finally, got to meet his little girl who is the cutest thing that ever wore a tutu.

Then I came home to write a paper on Narratology. Oh grad school life.

But I also realized how much more I want to get into public speaking/disability advocacy, so that's a thing.

Book Musings: The Fault in Our Stars

The Fault in Our Stars

Like most people, I've been trying to put my thoughts about this book into words for weeks. I didn't post it as my best book of January, because everyone did. I wanted my review to stand out. But the truth of the matter is, it can't. It can't because every person experiences this book differently, and no person's opinion matters more than another.

For many people The Fault in Our Stars represents a glimpse into a different world. They don't "relate" but their "eyes are opened." I spent the first two-thirds of the book wondering how John Green managed to retell my life. I deal with chronic illness and disability, not cancer, but so many of Hazel's emotions and interactions spoke to my experiences. There's a scene in the book where she goes to the Ann Frank Hais. Her physical struggle there, and her justification for working through it, took me immediately back to my own fight to climb those ladder-like stairs.

Encountering a book written by a non-disabled person that captures the nuances of disability is an incredibly rare occurrence, but I found it in The Fault in Our Stars. I highly recommend it to people who don't have experience with disability, but I recommend it more to those who do.

Friday Five!

1. I know the Disability Profile isn't up yet, but something happened this week that made me change my mind about who it's going to be, so that'll be up Saturday.

2. Grey's Anatomy last night was so the bomb dot com. I am a sucker for homages to old episodes, and for alternate realities, and also have the same brain as Shonda Rhimes some times, so I was right there with it all. I find it fascinating to imagine where the world might be if people had made one different decision, so it made me happy to see my show explore these things too.

3. I'm going to Colorado for the first time next week. I'm presenting at a conference on inclusive education, seeing one of my mentors who moved there several years ago and my mother is joining me. With so much to do to prepare, this is not the time to have writing projects eat my brain. And yet.

4. Some of you know I've had a week of writerly disappointments. My final three partials came back with three nos, in three days. But I think I've figured out where that MS needs to go, and I'm working hard on others to send out in the meantime. My immediate reaction to the rejections weren't despair, but determination. I think that's a sign that I'm meant to be in this thing for the long haul.

5. Not the Kristen Bell with a sloth video. Aren't you glad?

A Confession

Oh Blog World, a confession. I do not generally have an issue with social anxiety. I like making friends, hanging out with people and such. But I am horrible at socializing in groups. I attribute it to many things. I'm short, so that doesn't help with those times when you're mingling, and you get shut out of the circle, and you try to work your way into the circle, but you're at elbow level, so you're also trying not to get hit in the face and....

Yeah.

Also, I'm kind of a strong personality. You'd think that'd work well in a group, but.... well. I take some getting used to. And that's fine in, like, groups you see all the time. People from my program, my sorority sisters, old high school friends. It's fine. But new people tend to give me sidelong looks, shuffle to the left and shut me out of the circle.

Before accidentally elbowing me in the face.*

So, yesterday I had agreed to go to a Nerdfighters meet-up at the Prudential Center. But I woke up and REALLY didn't want to take the bus+T, or walk+T or really anything at all to get there, because it is maddeningly inconvenient for a place that is a mile away, especially to spend two hours being awkward (and I know, Nerdfighters, but trust me MY AWKWARD KNOWS NO BOUNDS).

Plus, from the excuse factory, I was ill all week, so even though I was useless, I didn't actually do productive things. Yesterday, I edited half of a manuscript, snuggled with my large stuffed frog, watched a massive amount of Vlogbrothers videos and read a book.

I regret nothing. I was a productive, writerly person, and it was awesome.

*This hasn't actually happened, except in my nightmares