These days, cynicism is obedience. What's really radical is being willing to look right at the problems we face and still insist we can solve them. ~Alex Steffen

Thursday, May 14, 2015

Throwback Thursday Post: My 12 Random Thoughts and Views on Disability

Originally posted on November 14, 2013 to Facebook

I was given 12. I thought I'd do things a little differently because a lot has been on my mind lately in regards to disability. So in the comments section, My 12 Random Thoughts and Views on Disability:

1. If I woke up with the ability to walk independently, the first thing I’d do is run up and down our dirt road to warm up my legs and then trek over and climb T Hill. I hear the view is beautiful.

2. That said, Melanie’s told me she is going to find a way to get me up there one of these days and I believe her. My sisters have always found ways to get me to impossible places.

3. I played Tiny Tim in our high school’s production of A Christmas Carol, and I loved every minute of it! I still remember Ms. V coming to me, prefacing her request with, “Now, you don’t have to do this at all, but I was thinking…” I said yes before she even finished.

4. I think it’s BS that casting directors cast abled-bodied actors in disabled character parts, no matter the disability. I don’t care if you’re Daniel Day Lewis. There are virtually no parts for working actors with disabilities as is. So it always feels like a slap in the face when I find out they’re not disabled in real life.

5. Vince Gilligan, brilliant writer that he is missed a huge opportunity to delve into Walter Jr.’s motivations, desires-anything really. I know it wasn’t his story, but he really was the least developed character and it’s a damn shame because there were so many eyeballs on that show.

6. I’m determined to get at least one of my script ideas written and produced. Even if takes until I’m 90. I’m going to get the disability community’s voice to Hollywood. It’s time we write, produce, direct and act our own stories!

7. I love disability humor, I’d much rather laugh than take things seriously. But context is everything.

8. Heather and I tried to fool our dad that we were the other one once. She got in my chair and I directed her on how to sit just so to get the right look. “Ok, now lean over more, now tilt your head, now put you hands at this angle.” CP bodies have minds of their own, and I wanted it to look just right. Re: #4: If able-bodied actors are going to portray disabled people they should do their due diligence and look the part. : )

(These next ones are more serious)

9. This one is sad in retrospect, but every birthday wish from I’d say 6-11 was a wish for the ability to walk. After that I came to my senses. If I could tell li’l Hil anything it’d be to focus on what you have instead of what you don’t.

10. My first, honest, gut reaction to having a child with a disability would be one of sadness. I’d be sad, not because of her disability, but because I know how this world perceives those with disabilities. Societal and attitudinal barriers abound. It’s a hard road. She’d know from a very young age that she’d always have to work thrice as hard as anyone to be thought of as equal.

11. After the sadness passes, you better believe I’d work my fingers to the bone to give her every opportunity out there that her peers would have. Indeed, that’s why I want to go into public policy, to make this world better for all the little ones coming up behind me.

12. I don’t believe I have a disability because of some divine plan to teach those around me. I have a disability because I was born premature and suffered oxygen loss that affected the part of my brain that controls mobility. It’s pretty straightforward actually. That said, this is the hand I was dealt, and I’m always going to do everything in my power to advocate for those with disabilities who can’t advocate for themselves.

Friday, December 6, 2013

What you see is not how I see myself

Let me try to explain. The video below has been making the rounds on FB and I have been avoiding commenting on it because it brings up some interesting thoughts for me that I needed time to try and articulate.

I have written before that CP bodies are different: muscles pull in directions of their own accord, spastic limbs have to be tied down, and still try to escape. Head tilts will always be there, and drool will escape in a fit of excitement in the midst of storytelling. I have been aware of my body’s quirks from day one. This is the body I have; I’ve learned to find the humor in it.

But you see, I often forget that this is what my body looks like on the outside, to others. It is not uncommon for me to pass a mirror in a store, or reflective surface and pause in shock. Not because I find myself repulsive or anything like that; I simply forget I look disabled. “Yup, there’s no mistaking I have CP,” I’ll say to myself. I just never see myself as having a disabled body even though of course, I do.

In my minds’ eye, I’m rockin’ an awesome pair of wheels, sitting tall and straight not a spastic limb, head tilt, or crooked body in sight. I would liken it to when you hear your own voice in a recording; it’s not bad necessarily, just different.

So on to my reaction of the video: I think anything that brings visibility of people with disabilities to the fore, is fantastic. We need more of this! Not to mention this is a novel, lovely idea. One that had not even occurred to me and I'm always mentally inserting people with disabilities into mainstream media. For example, I always wanted an iPod shadow dancer in a wheelchair back when those Apple ads were so prominent.

I just wanted to chime in and challenge the notion that people with disabilities view themselves as different. In fact, our reaction when confronted with our image is often the same as everyone's: "is that really how I look?!" 

You often hear this sentiment more as people begin to age: "I guess I look my age, but I don't FEEL my age."

I hope this provides some insight. But honestly, I don't think I'm unique. Don't we all view ourselves differently inwardly than what meets us in the mirror?

Saturday, November 10, 2012

Disability in Pop Culture: Daphne from Switched at Birth

Hey lovely readers! Long time no post, huh? Lets jump right in, shall we.

I was looking for a new series to stream on Netflix and I kept seeing Switched at Birth popping up as a suggestion. The draw for me before watching was Marlee Matlin because I've always loved the characters she's chosen in the past, particularly Joey Lucas on The West Wing.

So in the wee hours of the morning last week, when I couldn't sleep because I kept thinking I would see Bloody Face from American Horror Story: Asylum the minute I turned out the lights, I decided to give Switched at Birth a spin.

I was very pleasantly surprised! The premise: two babies mere hours old accidentally switched before going home. One baby, Bay Kennish grew up affluent. The other baby, Daphne Vasquez, grew up in a poorer neighborhood. And it is reveled that she is deaf after having contracted a case of meningitis as a toddler.

What I think this show does remarkably well is handle multiple and interplaying issues such as social economic status, race, and disability. It does so with a delicate hand and a surprising and delightful depth.  Because Daphne Vasquez was raised by Regina, her single, working, hispanic mom in a poorer neighborhood, it is explicitly implied by her wealthy biological parents, the Kennish's that Daphne more than likely wouldn't be deaf had she been raised by them.  Regina  rightly points out that she did a damn good job raising her (their) daughter. The show plants the idea in your head though that maybe the Kennish's have a point, as hard as it is to admit.

I'm going to break up this post into two parts because I want to talk about Daphne (above) more in depth, and want to do it in relation to her best friend Emmet who is also deaf.

So stay tunned, I'll be back. Promise!

Wednesday, November 16, 2011

Disability in Pop Culture: Rollin' With Zach premieres December 12 on OWN!

Official Trailer: Rollin'

I CAN NOT wait for this! I'm SO excited! I love that Zach's humor and charm wasn't lost in translation to a network-reality series.  Let's hear it for Zach! representing for us and our experiences.  It's been a long time coming, for a show like this to get on-air with such a visible platform like Oprah's Network!  Let's hope it won't be the last or a long time in between when a new show pops up that shows more of who we all are beyond our disabilities!

Saturday, November 12, 2011

You Know You Have CP When...

You go for a pedicure and your toes are straining with all of their might to go in the only direction they know: right into each other.

Like this:

My OPI Little Red Wagon painted toes put up a valiant fight smooshing those toe speraters to smithereens, but alas my nails dried perfectly.  Great experience for my first professional pedicure ever!    

Additional note 12:42 pm: My sister Angelica says my color's more Little Red Walker Handles than Little Red Wagon.  ;D

Wednesday, November 9, 2011

Disability in Pop Culture: Artie from Glee

I thought it apt to do my first Disability in Pop Culture post on the most visible character with a disability on television right now: Artie Abrams from Glee.  And no, I didn’t know he had a last name until I looked it up just now.

As we all know, Artie’s portrayed by Kevin McHale who does not have a disability in real life.  When I talk about my passion for writing characters with disabilities for all mediums: film, TV, plays and books, people usually bring up this character and ask what I think about casting non-disabled actors for disabled roles.  Does it bother me in general? Yes it does.  Does it bother me that Kevin McHale got the role of Artie? No it does not…anymore.
Of course when Glee first premiered all the buzz around this character and the actor cast in the part centered on that fact that he didn’t have a disability.  Honestly, I wasn’t really fazed because frankly that’s par for the course when it comes to casting in Hollywood.  Of course, it didn’t escape my notice and I would have loved if the casting directors had tried harder to search for an actor who could sing and was also disabled, just like the character.  For comparison, I was absolutely overjoyed when I found out that R.J. Mitte, who portrays Walter White, Jr. on Breaking Bad really did have CP, (who’ll get his own post in short order).  But the bottom line is, if we want to see ourselves portrayed on the national stage in any capacity we will have to be the ones producing, writing, casting and acting the parts.  Will it be a heck of a long road, with seemingly impossible odds?  Hell yes.  But nothing worth fighting for ever came easy, right?  And I don’t think of that as just an empty platitude.

Now to the actual storylines that Artie is given on the show.

So far I’ve pretty much liked what this character’s been given to do.  Much has been said and lamented over, about the fact that Artie would give anything to walk.  He doesn’t really take any joy or pride in being disabled.  I can’t speak for all disabled individuals, so I’ll just speak for me from my experience.  I’m 27 and have been disabled my entire life.  Being a teen that happens to be disabled is hard, really hard.  Being 27 and disabled is hard, not as hard as being a teen and disabled, but hard none the less.  Are there days where I wish I could walk unassisted?  You betcha there is.  Not the most joyful and prideful answer, but it is the most truthful answer.  The fact of the matter is, I didn’t find a person like me (same cognitive abilities, ambitions, and dreams who also had CP) until I was 19 and in college.  Until then my experiences with other people with disabilities was limited to those who were of lower cognitive function and were in Special Ed classes.

So imagine if it took me 19 years of my life to find someone like me, 24 years to join a group comprised of professional women with disabilities who have given me hope for my future, and up to and through today navigating all the myriad of issues associated with disabilities- what it must be like to distil all that into portraying a character of 17 who hasn’t been disabled all his life, by an actor who doesn’t have firsthand knowledge?  It’s tricky and messy, and of course there are going to be some missteps.  I’m willing to give the writers some breathing room.

I particularly liked the episode titled ‘Wheels’.  It’s been a while since I’ve seen it so I can’t speak for it directly right now, but it does stand out as one of the better episodes to me.

Regarding last night’s episode, Artie had a small but on point little speech about feeling for the first time that he was capable of achieving something independently of others and how great that felt.  I remember that feeling well.  It was when I first learned to drive and got my license.  And come to think of it, my example is universal to the teen experience and really is not dependent on whether I’m in a wheelchair or not, is it?  Although it is more laborious a process, the end result is the same: the freedom to drive...

…and the awesome power of figuring out who you are, finding your tribe who’ll become your friends and mentors, and finding your place in the world and being damn proud of it.

All of which I have faith they’ll explore in due time with Artie.  He is only a teen after all.  The journey is all about discovery.

Sunday, October 23, 2011

Blog Maintenance Post: Using Disqus for Comments

Hi Readers,

I've been updating my blog-increasing functionality.  I'm figuring out the best tools to use to make this blog as interactive as possible between you and I.

Disqus, pronounced "discuss", is a service and tool for web comments and discussions. The Disqus comment system can be plugged into any website, blog, or application. Disqus makes commenting easier and more interactive, while connecting websites and commenters across a thriving discussion community. (description from their website)

I thought you might be interested in this tool since I know many of you are also bloggers.  I'll check back and give you my review after I've been using it for a while.

Thanks for clicking on over!

Disqus for hil on wheels