Tag Archives: disability

Disability in the ALA Youth Media Awards: Separate and Equal

Of course I was excited last week when the Schneider Family Book Awards which “honor an author or illustrator for a book that embodies an artistic expression of the disability experience for child and adolescent audiences” were announced at ALA Midwinter.

I’ve only read the middle-grade winner – Rain Reign by Ann M Martin (Babysitter’s Club author, in case you lived under a rock or had no elementary-school aged children in the 90s), but thought the story of a girl with autism learning to love and let go when she encounters a lost dog was wonderful. I’ve requested and ordered the other two for my library system.

What really made me (literally) squee, however, was that Cece Bell’s El Deafo was a Newberry Honor book. This funny and touching graphic novel explores what it is like to grow up wearing hearing aids and attending a mainstream school. I am so, so happy for this book that it was recognized.

I am especially happy, however, that it was recognized separate from the Schneider category – because while it is important to recognize marginalized groups and create recognition for works exploring them, the ultimate goal is to de-marginalize them and not have to limit “disability literature” to one category. It is great that the nominating committee saw fit to see beyond genre boundaries and pre-conceptions in this case.

I highly recommend reading through these books and the others that have won in past years.

IMG_5796

IMG_5797

Pile O’Awareness, and of History

2015/01/img_0368.jpg

A stack of t-shirts sits on my bed. They span 6 years, the entire United States, and come from a variety of experiences I have had in the Moebius syndrome and rare disease community. Some I wish I could relive, some I wish I could change my response to, some I am still not sure of. But they are all there, sitting on my bed in front of me,

These t-shirts represent communities, constructed by chance, by choice and perhaps by necessity. They are communities that sometimes I wish I could escape, but know I cannot. Communities that have shaped me and supported me and pushed me. Communities that have, most of all, taught me.

January 24 is Moebius Syndrome Awareness Day, commemorating the birth of Paul Julius Mōbius – a German physician in the 1880s who first described the syndrome. It is a time for awareness-raising, of course, but it’s also a time for reflection. About how we navigate the world with a rare disorder, about how we negotiate real-world life with the online community we have formed, about how we raise awareness in everyday life, not just one week a year.

I tend to be more quiet, and approach awareness raising in the same way – open to awareness-raising, but guarded. Probably too guarded, but that’s a post for a different day (or never). Other people are most comfortable doing it in large-scale ways. Both are needed.

All kinds of things are happening this weekend – get togethers, news stories, social media campaigns… I’m spending Saturday day working, and Saturday night undoubtedly catching up with what I’ve missed! I’m looking forward to seeing what is accomplished this year, and what will happen looking forward to next year and beyond.

My friend Kathleen Bogart just published a study about how awareness leads to understanding. And that is what ultimately I think anyone, but especially those of us living with unique medical needs, want. I don’t even care if you can’t remember what it’s called, honestly (best line ever “whatever-it-is-that-you-have-again?)… but understanding is paramount to acceptance. And we all, ultimately, yearn to be accepted. I think I, and others, are doing good work towards that goal.

So this pile of shirts represents a history, my history, with the Moebius syndrome community. It represents me navigating my unique journey. These are my choices, my desires and my mistakes. They are uniquely mine, just like all of the individual experiences living with Moebius shared on Moebius Syndrome Awareness Day.

Together, they make a visual embodiment of a layered story. My story.

International Assistance Dog Week

20140805-070550-25550838.jpg
This week marks International Assistance Dog Week. I think it’s a great idea to make us think more broadly, and more compassionately, about the entire assistance dog community. I recently had a sort-of encounter that made me reconsider this.

Normally seeing other working dog teams out in public is nice. There is the moment of acknowledgement, the admiring of both dogs behaving themselves, and then going on our own separate ways. Often this is done without so much as a word between the two handlers, just a communal acknowledgement. (Unless it’s a fellow CCI handler/raiser/volunteer, then you end up discussing breeding and raising and who trained the dog in Advanced Training!).

Last week, though, I had my first “bad” encounter with another service dog handler, and I was honestly a bit shocked. I was at my local independent grocery store, checking out the prepared food. Cassius was standing between me and the counter. Guide dog and handler come barreling down the aisle behind me (aka, before I had time to react!), dog sticks its nose in Cassius’ face on the way past. Cassius rocked a pretty darn good “leave it”, guide dog got a stern forward. All good, right?

Apparently not. As I was checking out, I heard the handler asking the cashier if they knew there was another service dog (in a blue vest. Hello, if you gave enough vision to see the blue vest, how about seeing the big honking yellow dog in said blue vest?!) in the store… “And if they knew if it was a real service dog?” Sigh. Thankfully I buy a lot from said grocery store and they know I’m almost always there with Cassius, so they stood up for me… But it was rather bizarre.

So what can be learned from this? Education! Education for other service dog handlers (yes, there are indeed other types of service dogs besides the kind that you have!). Education for the public about fake service dogs so that the default question isn’t “are they a faker?” And education for businesses so more can make good judgements like this one did.

And while we’re at it, how about some education for your dog so it doesn’t sniff things on the way past. 🙂

24th Anniversary of the Americans with Disabilities Act

20140726-093637-34597812.jpg
The ADA was signed 24 years ago today. While I was definitely too young to remember life pre-ADA for people with disabilities, I know I have benefited from growing up in a post- ADA and post- IDEA society. It’s not perfect for people with disabilities, of course, there are still huge barriers and challenges – but progress has been made and is only continuing.

I loved the message of this graphic – it’s so true! Disability rights are indeed civil rights.

A Preview of Rare Disease Day 2014

A Preview of Rare Disease Day 2014

My dog’s getting into the spirit of the day! Actually, he just really likes to hold things so I capitalized on that in this instance. Tomorrow I’m going to Sacramento, CA with many other rare disease advocates from across the state, along with the National Organization for Rare Disorders and the Global Genes Project. We’re not going on Friday the 28th (which is Rare Disease Day) because the legislature is not in session then… so we’re being prompt! I’m really excited to see what we can do collaboratively to advocate the cause of rare disease funding, care and research.

Canine Miscellany

Image

A few rather un-related dog things of interest: ThreadStart, an apparel crowdfunding site, has paired with Canine Companions for Independence and produced this wonderful design. I love it, especially since I do think these dogs (and all service dogs) are indeed heros in their own right. What they do is so diverse, depending on the needs of their partners, but their loyalty and joy are truly heroic. I picked up a shirt, because a. you can’t have too many dog t-shirts, apparently and b. I love the design so much! I will wear it proudly.

And in other news:

Image

If you’ve been watching the Olympics on NBC, you have probably seen the promos for a new television show called “Growing Up Fisher” – featuring a father who is blind and has a (really cute) guide dog. I myself am particularly fond of the one where it cuts to the dog acting as an ice hockey goalie.

I probably don’t have to tell you how abysmal the overall depiction of characters with disabilities is on television. It’s just… bad. I have measured hopes for this one, from the previews it looks really, really funny. I hope it lives up to its potential for a comedic take on life with a disability.

And I hope the dog gets lots of screen time!

Disabilities (are sort of) in Fashion

Jillian Mercado and the new Diesel campaign Jillian Mercado, 26, a New York fashion expert who has muscular dystrophy, is one of the new faces of Diesel. (Diesel )

Disabilities (are sort of) in Fashion

“Model in wheelchair stars in groundbreaking new Diesel ads” (LA Times)

This popped up in my newsfeed this morning, and I thought it was worth sharing. Great for Diesel for showcasing beauty in diversity.

When I was in high school, there was a short-lived disability culture magazine called We that changed how I viewed disabilities of all kinds. I was deeply moved by Rick Guidotti’s Positive Exposure work, and ended up publishing an academic paper on his projects. There is still such a long way to go in how our culture defines what is beautiful and what is mainstream, but these small steps are indeed small steps in the right direction.

Clubfoot Treatment Changes Featured on NPR

Clubfoot Treatment Changes Featured on NPR

This is a fascinating article and discussion about the advances in clubfoot treatment over the past few years. For me, having a clubfoot is difficult even though it was technically “fixed” before I was 2 – I have a lot of chronic pain and balance issues from that foot and leg. It’s great that different, more effective, approaches are being embraced – thanks in no small amount to the power of the internet to connect diverse people facing similar challenges.

Moebius Syndrome Awareness Day

20140124-124835.jpg

I think that the best sort of awareness is spread quite unintentionally, just by living my life and sharing with people who know me and want to know my story.

Every once in awhile, though, a big awareness day thingy makes me happy to be part of this community. It’s amazing how diverse and varied we all are, brought together by chance and through social media.

For more information on Moebius syndrome and MSAD, see http://is.gd/WhatIsMoebius and http://is.gd/MSAD2014.