International Assistance Dog Week

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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

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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

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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:

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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

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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.

Feelings of Guilt (& Delusions of Grandeur)

GLINDA: Can’t I make you understand? You’re having delusions of grandeur… -Wicked

I’ve been reading all these hopeful, inspirational blog posts recently, and just can’t get behind them.  Not that my life is a disaster or anything (far from it, really!) But I can’t get behind the whole “I was a (probably) genetic mix-up for a reason”. I don’t know, maybe I’ve just studied too much disability theory for my own good or am just too damn bitter… but it doesn’t sit well with me.

It isn’t my responsibility or duty, as a human being, to make other people better people.  It isn’t my responsibility or duty, living my life, to “teach” anyone anything. Hell, with the amount of mistakes I’ve made recently… please don’t use me as a guide for good life planning!

I see the temptation, though, to make sense of the nonsensical.  The one in a million (or thereabouts) chance that whatever happened happened doesn’t make sense.  And, for me at least, it doesn’t have to.  Unlike some, I can’t wait for researchers to hopefully figure out more about the causes of Moebius syndrome. Why? Because I like to know stuff! And maybe because I approach having been born with Moebius as a purely genetic, random occurrence… rather than anything with any more deeper meaning whatsoever.

What does this all actually mean, though? (and how in the world does it relate to the title of this post?).  Well, for me I think the delusions of grandeur can cloud how people interact with the world, and how they expect people to interact with them.

Personally, I feel no sort of responsibility for any kind of social greater good related to the random fact that I was born with Moebius syndrome.  For a long time, this wasn’t the case.  It ate at me.  I thought I should be doing something more, something different, something to help people who for some unknown reason looked to me for answers.

But then I stepped back and realized what I want.  And I don’t want that.  I am okay living my life to the best of my ability, for me and not to serve as any kind of example.  But damn do I feel guilty about that!  Which is bad, I know, I need to make myself not as swayed by what I fear people will think.

I hope that didn’t come off as completely bitchy or snobby.  But sometimes, preserving a little sanity in this weird, convoluted world of living with a disability isn’t pretty. At all.

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