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.


The Diversity Conundrum

It happens every so often: the question of where disability fits into the diversity conversation.

This week, it was an e-mail from my alma mater, asking about our experiences of diversity during college. I opened the e-mail, saw the usual questions about race and ethnicity, began to type my response… and then closed my browser window before hitting the “send” button.

Why? I’m not sure. I’m not sure if there is a good place for the disability as diversity argument, or more likely, I’m not sure if I care enough to keep fighting for its inclusion.

It’s a disarming statement, I think, for me as a white woman from a (comparatively) privileged background, to stand up and say, yes I am a minority, yes I am discriminated against due to that status. It throws people off. It’s hard to contextualize or make sense of, unless you have been in this position.

I tried to do it for awhile, I was on all kinds of diversity committees, ostensibly as the “disability representative”… did it have any impact? I hope so, but I’m not sure.

I guess I’m just weary of it all, the attempts to get people to recognize experiences that they have not experience as validly diverse, similar to although theirs.

That’s mostly the point of diversity education, actually, but it is easier said than done.

So for now that survey goes unanswered, unless I think of some brilliant way to formulate my thoughts on the conundrum of contextualizing disability within the diversity conversation.


On Beauty Queens & Guide Dogs

You’ve probably read about Nicole Kelly, recently crowned Miss Iowa, who happens to have a limb difference.  Pretty amazing! Even more interesting, or more random, is that she isn’t the first Miss Iowa to have a limb difference!  Granted in every other way possible she conforms to our cultural beauty norms, but I still have to give credit for the judges and organization for their choice.

Maybe this is just because I spent a year or two watching way too many episodes of Toddlers & Tiaras (aka, near child abuse in the name of a crown and trophy), but I have to admit I’m a little judgmental about pageants.  Miss America is a bit better (they did, after all, crown a deaf winner once), and I kind of love Miss Iowa’s platform – both supporting disability awareness, and supporting VSA (an arts organization for people with disabilities).

Her talent was Defying Gravity from Wicked, which I think encompasses perfectly what she is doing in raising awareness of people with differences and disabilities.

I wish her the best of luck and hope she wins the whole darn thing!

Miss Iowa 2013, Nicole Kelly

And on a completely different note, have you seen the video of O’Neil, the Guide Dogs for the Blind dog in training, narrowly missing an out-of-control car?

I joke that my dog would be the worlds worst guide or hearing dog… the whole alertness thing is not is forte.  But I think (hope!) he has enough self-preservation that he would help me out here (although it’s not part of his job description, he would like you to remember)!

Since O’Neil is in his final stages of training, one very lucky recipient will get partnered with an already-famous dog!

A Guide Dogs for the Blind yellow lab named O’Neil wears a harness at the center’s campus in San Rafael, Calif. on Tuesday, June 11, 2013. (Alan Dep/Marin Independent Journal)

A bit of Positivity for the weekend

Rock Center   |  Fashion photog devotes life to the disabled

POSITIVE EXPOSURE, an arts, education and advocacy organization, utilizes the visual arts to celebrate the richness of human diversity and to expand and challenge conventional standards of beauty.

I am continuously in awe of what Rick Guidotti and the Positive Exposure project are able to accomplish through his vision and connections. It’s not that hard of a concept to realize – that all people are beautiful – but it gets lost in our current social and media environment.

That he is able to actualize this, and spread the message that so many of us already know, is wonderful. I always am happy when his projects get profiled, and more people are able to learn about what he is doing. I hope everyone in the disability/difference community someday has the opportunity to watch him at work. It is spectacular.

Keeping on the positive bandwagon here, had a great riding lesson on Cowboy today – we rode bareback, actually so much harder than with a saddle but a lot of fun! Cassius got to hang out at home in his crate while I rode, which I have to say he doesn’t object to at all! He was happy to see me, of course, when I returned… but he’s back in the crate for some serious napping right now. I think anything that involves a human giving you praise and a soft bed to nap on is perfect by his standards.

Want people to talk to you? Get a dog!

Okay, that is rather crass.

But seriously, it’s a curious phenomenon that I’ve observed in the almost two months I have had Cassius: animals provide a reason for people to say “hi”.  On morning walks, two people with dogs almost naturally greet each other without thinking about it.  None of the awkward “should I say something”-ness that often goes on between people in urban areas.

Sometimes people, even those without any noticeable differences, are just kind of awkward in public.  That whole wanting to be friendly but not sure if they should.  Add in disabilities or visible differences, and it gets even more problematic.

68 pounds of adorable yellow dog with a perpetually-wagging tail goes a long way to put them at ease.

It’s weird, because the act of having a service dog also definitively marks you as “different” – but I find that freeing, in some way. There’s no confusion, no intermediary between normal and not normal.  And I think that puts people at ease in a way.  It takes the burden off of them to figure out what’s going on.

So I won’t say that getting a dog is the key to any sort of isolation that people with disabilities experience (since dogs and humans are very different, and while dogs are great… they won’t replace human relationships!), but at least for me, I love how my dog makes me feel just a bit more connected to the people I encounter.