Natalie A

Supporting inclusive theatre

I’m not really a movie theater fan. I don’t know if it is sensory or what, but there are just a bunch of other things I’d rather be doing than movies. I’m definitely a fan of Netflix, though!

I was lucky enough, however, to be exposed to the performing arts as a child and love almost nothing more than a live performance – concert, theater show, dance performance… just about anything live makes me happy.

The organization who runs the discount TKTS booth in Times Square, the Theatre Development Fund, also runs all kinds of amazing programs aimed at making theatre (both in NYC and across the country) accessible to all – including people with disabilities. I’m lucky in that I do not need any accommodations to go to the theatre, but many people are not able to do so. They offer discounted performances targeted to people with disabilities affecting vision or hearing, such as audio-described and signed performances.

TDF recently started something called the Autism Theatre Initiative, which offers modified performances targeted for families affected by autism. I think this is an amazing idea that I hope will have more success, as theatre is a powerful art form that everyone should have access to – and that many people with autism cannot. As a part of the newly-launched GOOD site, they are in the running to receive funding to continue this program. Currently the Lion King offers performances, personally I think it would be amazing if this expanded beyond Disney shows (many people with differences of all kinds have responded to the message of Wicked, for example, that would be great if they could adapt that show). Please consider checking this out and voting!

Thanks for reading this. I don’t really want to use my blog just to promote other things, but this is important to me on behalf of theatre fans with and without disabilities.

Autism awareness and Bully: in the news today

Yet more awareness days! (Why are they all in the spring?!) Autism Spectrum Disorders are important to know about and especially relevant within the Moebius syndrome community, where ASDs seem to be a bit more prevalent. Really interesting research is being done regarding this and hopefully we’ll know more answers soon about the connection between Moebius and ASDs.

Sometimes I wonder if it’s over-diagnosed in the Moebius community, where lots of young children have sensory issues and expressive communication issues and social issues purely as a result of Moebius itself, but don’t have Autism. But regardless, the rates are higher and more awareness and research is wonderful.

And on another note: Bully, a documentary chronicling “a year in the life of America’s bullying crisis” is opening soon. It’s important, especially for families of children who are different in any way.

Having said that, I want to say that having Moebius syndrome does not automatically equate to being bullied. While I did not enjoy my middle and high school experience at all, I have to say I was never bullied. At all. I went to a school district that was hyper-achievement oriented, and I was a “smart kid”. I found my niche early on, and was respected for that. Granted that pressure led to all kinds of other issues (perfectionism + pressure cooker atmosphere = not good!) but I never felt unsafe or targeted. Miserable, yes. But never particularly bullied.

I just wanted to put it out there, not to brag or discount anyone’s experiences, just sharing what I experienced.

Diving into the wreck

I am here, the mermaid whose dark hair
streams black, the merman in his armored body
We circle silently about the wreck
we dive into the hold. …
We are, I am, you are
by cowardice or courage
the one who find our way
back to the scene
carrying a knife, a camera
a book of myths
in which
our names do not appear. – Adrienne Rich

The poet Adrienne Rich passed away yesterday, and in her obituary this poem was quoted. I first read it, I think, in one of my college writing seminars and returned to it again often.

I think so much about life with a disability or medical condition, is akin to diving into the wreck of trying to find one’s place in a society that does not immediately have a place for you. Sometimes I don’t want to explore that wreck. I take another path, ignoring the glaring scene before me. Other times I explore it, finding my way through and making my mark on it. I think many people I know are the same way.

We search for ways to symbolically make our names appear in this world, to make a mark and be counted. To a certain extent everyone does this, but differences can make this path more perilous at times…

March is National Autoimmune Disease Awareness Month

Before I forget, March is National Autoimmune Disease Awareness Month. It’s important to me because, like many people with Moebius syndrome, I not only have Moebius but also have other medical issues – I had an autoimmune disease when I was younger. Thankfully it’s been in remission for a long time… but it can always come back. That knowledge frightens me, as neither the disorder or the treatment were painless. It has no known cause, either.

It’s funny for those of us familiar with very rare disorders that many autoimmune disorders are in fact rare – although there are many more people with them. But they still face many of the same issues.

I have to think the two are related somehow (or else I just hit the unlucky health jackpot!) and hope that the research being done on both conditions will shed some light and lead to answers about what exactly is going on with both conditions. It won’t necessarily make a difference in my day-to-day life, but out of pure intellectual curiosity, I want to know…

More music that inspires me…

If we go softly we might as well not make a sound
If we speak gently we’ll never break the crowd
If you keep hiding how will they know what you can do
I’m not risiding within these walls with you

Careful hearts might stay protected
But rebel hearts get resurrected

See I fire flames
Light up this town
Learn our every name
Or burn it down
Don’t go back to then
Don’t kill your voice
Stand like girls or men
But make some noise – Noise by Gavin Creel & Robbie Roth

So much of this song applies to life with Moebius and the importance of awareness and the sense of community we now have. It’s important to “get loud” re: awareness in any way we can or feel comfortable. We don’t need to shout from the rooftops or anything obnoxious like that but awareness in everyday life is important. We can make a big difference if we think about it…

“The power of positive dressing”

I’m a big fan of this issue of Vogue for many reasons. First of all, Adele is amazing and I love the fact that they featured a “normal-sized” person on the cover… and I can’t emphasize how much I agree with the power of positive dressing.

I can’t remember a time when I wasn’t just a bit fashion-obsessed. I distinctly remember my cousins and I layering our bright neon Gap Kids socks and being ridiculously excited about matching Laura Ashley dresses (hey, it was the late ’80s/early ’90’s!). My aunt gave me a subscription to Vogue in middle school… and my true fashion obsession grew.

Granted being fashion obsessed doesn’t translate to being able to actually buy what I see in Vogue (unfortunately!) but I think being fashion-aware and fashion-conscious really helps me feel better about myself and then present myself better. Then people are more apt to pay attention and give me a chance. It’s kind of like presenting yourself like you take care in your appearance gives people the chance to reassess their thoughts about what people who may look different from them.

So I stalk sale racks semi-obsessively, try not to buy too much (and amazingly enough am pretty successful at using restraint!), and embrace the fact that fashion does give me power. It gives me power over how others see me, but more importantly over how I see myself.

Thoughts About Rare Disease Day 2012

January 29 is International Rare Disease Day. Strangely enough, rare diseases are collectively not rare – about one in 10 people have one. Or if you’re like me, you have/had multiple unrelated (or related, who knows!) rare disorders. It’s striking, though, how common they are. Everyone knows someone who has something. And for me, I think that’s why I connect to Rare Disease Day. I mean, raising awareness for Moebius syndrome is needed and wonderful but I like how Rare Disease Day contextualizes everything for me. My experience, although unique to Moebius syndrome, is actually not that inherently different from people with a variety of different medical conditions. But without Rare Disease Day and some of the organizations such as NORD who are working to unite the rare disease community, we wouldn’t be able to connect and realize that we share these similarities even with different conditions. So for me, that is the take-away part of Rare Disease Day 2012: that we share so many similarities across disorders and conditions, and that need to learn from each other and work together to promote change and understanding. And I think it’s happening, slowly but surely. At least I hope so.

Moebius syndrome teddy bears have arrived!

Inspired by teddy bears with cleft palate surgery scars from the Cleft Palate Foundation, the Moebius Syndrome Foundation just ordered some bears of our own that will be available at the 2012 Philadelphia Conference (and online afterwards, depending on availability). While we don’t have completely custom bears like Cleftline has, we have bears with very cute purple t-shirts. One has “The Spirit of 2012 Moebius Syndrome Conference” logo on it and the other has the Moebius Syndrome Foundation logo and our unofficial motto, “I’m Smiling on the Inside” on it.

As a child, I was almost obsessed with anything I could relate to about other kids with disabilities. Because I was also book-obsessed, many were books. I would’ve been so excited to have these toys to play with, too. I don’t think there were really disability-related toys when I was a child. I remember being really excited to see that the American Girl catalog sold doll-sized wheelchairs, even though that happened when I was too old to really play with my dolls (bet my parents were thankful about that…)

So much of life with Moebius syndrome is not “fun”… so it’s great to have something cute and cuddly that is fun and spreads awareness of Moebius syndrome!

Music & Moebius

Sometimes music expresses feelings more aptly than just words could ever hope to. There are many songs that I love, while not specifically about Moebius syndrome, that I feel really express the experience of Moebius really well. A few are linked on my sidebar.

But today someone linked to a song written by a friend of theirs about their daughter that I think is beautiful. Here is “The Girl Who Smiles With Her Eyes”:

Rare Disease Research

Research is critical for many, many rare diseases. Some people with rare diseases will not survive without treatments and interventions that can only be accomplished through research. Although specific treatments don’t yet exist for Moebius syndrome, there is a possibility that they could eventually exist and be used to help all of us. Plus the knowledge of the specifics of what all the causes of Moebius are would be welcomed by many people in the community. We’re lucky to have some very dedicated researchers interested in Moebius, definitely not an easy feat for an uncommon disorder!

Many other disorders aren’t as lucky, and have trouble securing the researchers and the funding to find potentially-lifesaving treatments. For Rare Disease Day 2012, NORD and Lundbeck are working together to raise funds for research: