Thursday, October 20, 2016

Mama's Got a Brand New Bed (For Now)

Yes, it’s true. I bought a bed for work. My name is Nicole Cortichiato, and I have narcolepsy. It’s a sleep disorder where my sleep schedule is different than yours. Way different, trust me.

Napping is medicine to me. I need a nap every 2-3 hours to function. It doesn’t alleviate all the symptoms, but it helps tremendously and my boss Celia provides me with that accommodation.

I need to sleep like you need to use the bathroom. Unfortunately, finding a bed to sleep on at a moment's notice isn’t easy. Often I’ve had to sleep in a coworker's car while at work, or if I'm out in public, find a coffee shop with a couch. Sometimes, if I’m alert enough, I’ll even walk into a business with a comfortable chair and tell the employee I need to sit down for 30 minutes, say I have narcolepsy or just that I have a medical condition, and hope they will be kind enough to let me rest there.

Fun fact! There are also horses, goats, and dogs that have narcolepsy. See below:

I know... when it’s a dog or other animal, we feel way more empathetic. That poor, poor puppy. Look at what he has to go through. :(

Anyway, I’m not writing to get your sympathy. I’m writing to tell you about my brand new bed. Why did I get a new bed? Well, the old one was this pathetic lawn chair with no lower back support and a screw missing. Not to mention it was three rounds in the boxing ring to find a comfortable sleeping position!

So, I found two different businesses that make a portable blow-up bed (Outdoor Junkie and Akface). A portable bed I can carry around with me and fold up into a purse? Awesome! Naturally I bought one from each company (one to keep with me and one to stay at work). Now if they could just sell it in a vending machine... Then I would really be in heaven.
Me in the midst of a work nap on a new bright blue bed.
Remember: no nap is complete without a blanket and Teddy. Yes, this is a medical condition.
The beds arrived AND I slept like a baby for two weeks! But then... one day I fell back trying to sit on one, and I hit my head pretty hard on a bookshelf. Ever try getting on an inner tube in the water? These beds are just like that, only there is no water. So, after my little accident, I decided to sleep on the couch in Room 101, which is sometimes available but definitely not a permanent solution for space reasons. For now, I guess I will keep the beds for when the couch isn’t an option, and maybe I need to look for a helmet to go with the blow-up beds:
Me in a motorcycle helmet. Somehow the lawn chair doesn’t seem so bad now.
So if you think a nap would do you some good at work – you know, to increase productivity – then I fully support your decision to get a bed and take naps at work. My suggestion though would be to get a giant bean bag chair or some other safer option. And if you have any suggestions for my plight, please send them my way, because mama could always use a brand new bed.

If you want to learn more about narcolepsy, you can find more information here:

Happy Napping!


Thursday, October 13, 2016

Why We Need to See Characters with Autism on TV

One of the most frustrating things about parenting a child on the Autism spectrum is explaining to people how a spectrum works. Autism is one of those things where people have one experience with it and apply that to each and every kid that they come across. I suppose it is human nature to lump things into categories; I just never thought it would apply to my kid.

Most movies and television shows that portray a character on the spectrum give them some sort of “talent.” This has led to more people than you want to know about asking me point blank “So, what’s your son’s THING? I heard all kids with autism have that, right?” How I longed for years to see something that took away the ‘magic’ from kids on the spectrum and showed the day-to-day life.

Then, Parenthood got really popular on television and I had an entirely new thing to bitch about.
Max Braverman, a character on the popular television show Parenthood played by Max Burkholder, struggles with transitioning when a trip he was supposed to go on did not go as he had planned and begins to throw things around the room. His mother Kristina, played by the actress Monica Potter, stands by and attempts to help Max calm down.

I used to find myself incredibly annoyed at people coming up to me and saying “That kid on that show reminds me so much of your son! They are like the same person!” Then I would watch the show and want to punch a wall because what I was seeing was different from what I knew my child to be. It felt like such a disconnect and all I could think was “They have the same haircut and they are both on the spectrum. That’s it. Now stop talking to me and trying to make me watch that show.”

After years of staying angry at anyone who tried to compare my kid to one on television, it dawned on me that I was looking at things all wrong. I started to see the similarities – the trouble adjusting when things did not go exactly as planned, getting up in the morning, switching from one task to another. I started seeing what other people saw. I realized that my kid and the kid on that show didn’t have to be exactly the same for it to translate.

From Parenthood: Max sits on his bed cleaning the lens on his camera while his father Adam,
played by actor Peter Krause, stands beside him talking.

People NEED to see things on television or in movies in order to understand them better. It doesn’t matter if my kid and the kid on that show are the same, to the person watching, it’s about a connection to another perspective. If even one single similarity exists between the two, then it is a success. That’s one of the greatest things about visual storytelling; people feel connected to it. They feel like it’s part of their own life and maybe they understand my life a little more. And that is a wonderful thing.

Thursday, October 6, 2016

Adventures in Choreography

(All photos by Camille Wheeler)

To be perfectly honest the making of this dance was a first for me. It was so full of energy and rich with possibility that the hairs on my arm stand up when I think about it. You’d think with that kind of inspiration this blog post would be a piece of cake. However, I have spent the last couple of weeks playing ping pong with my thoughts trying to make sense of it all. Then it hit me! In 1997, Chicago Tribune columnist Mary Schmich wrote a column entitled “Advice, like youth, probably just wasted on the young.” The piece became so well known that Australian film director Baz Luhrmann used the essay to create his hit song “Everybody’s Free (To Wear Sunscreen).” Besides being a clever piece of writing and a personal manifesto I try to live by, the words: “Enjoy your body, use it every way you can. Don't be afraid of it or what other people think of it. It's the greatest instrument you'll ever own. Dance, even if you have nowhere to do it but your own living room. Read the directions even if you don't follow them.” perfectly describe how I feel about what Silva and I casually call Together and Apart.
“Encountering Balance.” Silva and I find a moment of balance as we sit side by side on the bus stop bench while holding hands. My crutch dangles from my arm as we pull away from each other. We are together and apart.
From studio to pavement and everywhere in between Together and Apart reminded me that dance is fun and that the panic I feel when I try to make work is all in my mind. What else did you notice, you ask? Well, I’ve done a lot of work outdoors but this is the first time I have gone from place to place. As improvisers, we are taught to connect with ourselves first and then relate to our environment. With this work, I had to dare myself to move differently. There was so much to take in! I had to process it all before I could see where I fit. I discovered I could use all my senses. While I found it challenging to push beyond just using my eyes and skin for inspiration, it was so freeing. In fact, right before we called it quits, Silva and I were dancing on a sand-kissed concrete courtyard. I will never forget how that sand vibrated throughout my body or how the sound felt as it cascaded over my eardrums. It was like the sidewalk was saying, “May I have this dance.” Now I understand what dance teachers mean when they say things like, “The floor is your dance partner too.” It was beautiful.
“Hello sand! Shall we dance?” Our dance becomes a trio as Silva and I find ourselves doling with the sand that has blown across a concrete court yard. We stand facing each other, about 2 feet apart. Silva strikes a modified warrior pose as she lounges forward. Her chest is low to the ground as one leg bends in front of her and the other extends behind. She stretches her arms out wide to either side. She is looking down as if she is going to kiss the sidewalk. I respond by bending both knees and crouching as low as I can while extending a crutch out in front me. I am looking down like a bull ready to take on her matador.
Tell me more, you say? Your wish is my command. Unlike other on-site pieces I’ve been in, we never rehearsed in the space for this piece. It was a true adventure. Eat your heart out Dora the Explorer! Before you trade in your ballet tickets for safari tickets, let me tell you what I think made our adventure possible. First, the score or movement “rules” for this piece were short, simple and sweet. If our movement was any more complex, I’m pretty sure our adventure would have turned into a disaster. Second, we had no official audience. As with any performance, whether in a studio; on a stage; or somewhere in the community an audience is a given. Basic expectations have been set before you take your seat. The performers are “on” way before the curtain rises. But, like a polka dot on a striped shirt, Together and Apart dared to be different. I never felt like I was performing! You’d think our matching outfits would have been a dead giveaway. Yet, I was stunned when barely a head turned as shoppers passed at Wheatsville Co-op. Plus; I’m always hyperaware of cameras during a performance. However, with Camille and Rey it was different. They were adventurers too. This experience would not have been the same without them. For those of you who have ever taken an Elements class or attended a DanceAbility training it was “One Mover, One Watcher” at its finest ☺  Silva and I had the freedom to focus on our relationship. I’m so glad we had each other’s backs because for the first time ever the risk taker in me didn’t mind taking a back seat. I was happy when Silva started climbing tables and lying on the ground because it helped me conserve my strength for the journey ahead. And, believe me I needed all the energy I could get. I have never been more present and more authentic in my life. I felt awesome! By the way, we did build a little bit of an audience. By the end of the day, people were definitely wondering if they should cross our path.
“Peek-a-boo. I see you.” Silva and I see each other in a whole new way as we sit side by side on a bus. Our torsos twist toward each other and our eyes meet. We take a moment to acknowledge one another through the finger telescopes we made with our hands.
But, wait there’s more. The bus, there’s no way I’m ever going to forget dancing on a bus! Seriously friends, this is tombstone material. It was thrilling to feel the motion of the bus as it moved forward. I loved how the up and down movement of its shocks and struts affected the quality of my movement. The space was so concentrated you could feel a pin drop through the sound of steel and motor oil. Truly a fantastic lesson in how gravity moves through the body, pure fun. Again, I felt like the bus was dancing with me. I felt like a sponge again. I had to take in before I could make a move. I felt completely taken care of. The best part was hearing the bus driver tell us how much he enjoyed our dance and that he hoped his driving was okay. He played a dual role of audience member and performer. I have always wanted to make a piece that explored this concept. I finally got my chance. Capital Metro you haven’t seen the last of me.
“Movement meets inertia.” As we sit side by side on the bus, our arms swing out in front of us as they complete a spiral that came from above. The palms of our hands grow wider as they face the floor. Our fingers grow longer as they pull away from each other. We are waving goodbye to the old and welcoming the new. It’s time for a new dimension of on-site choreography.
Well friends, I’m just about out of words. But, before I sign off let me leave you with this: GET OUT THERE AND EXPLORE THE WORLD AROUND YOU. Be a sponge and soak in the inspiration. Then, move the furniture in your living room, introduce yourself to the nearest sidewalk, or star in your own personal dance party during your next commute (remember safety first, of course ☺) Just get out there and move! Your environment is waiting and it wants to dance.

With love and gratitude,

Click here to see Rey Barrera's video of the Together and Apart performance!

Thursday, September 29, 2016

Listen, Look, and Learn from Our Youth

We recently finished our Giving Voice program, a partnership with AIGA Austin, which consisted of pairing 8 young adults with disabilities with 8 professional graphic designers. Each pair met for 3 hour-long sessions. The mentors listened to their students to find out what topics were important to them and to understand their take on the world. Together, the teams worked on how they could turn these discussions into visual representations of the topics. Using their professional skills as graphic designers, the mentors were able to help their students turn ideas into images, resulting in 8 posters, with each relating to a social cause.

This past Saturday a team of us hung these posters along with supporting materials at the Laura Bush Community Library. As is typical of physical labor work events that happen on Saturdays, spouses and significant others were dragged along to help! Thanks to Jen Bigheart, PR Supervisor of Westbank Community Libraries, and her wife Betsy, and Kim Hopson of AIGA and her boyfriend Robin, we hung the show in just under 2 hours.

The Opening Reception will be this Saturday, October 1st from 1:00-3:00 PM at the Laura Bush Community Library, 9411 Bee Caves Road, Austin, TX 78733. The event will include a silent auction of the original signed posters. The auction will close at 2:00 PM, and winners will be announced at that time. You will also get a chance to meet the young artists and their mentors. Don’t miss this unique event! But if you do, don't worry – it will be on display through January 6th, 2017, and smaller poster prints will be available for sale online.

The final posters have not been revealed to the public yet! So those of you reading this blog are getting a sneak peek. We look forward to seeing you at the event this weekend! Invite your friends to attend through our Giving Voice Opening Reception Facebook event page here.
Jen directs Robin on the ladder as Kim waits nearby with tape
ready to secure the wires behind the poster designed by Colton.
Robin and Kim secure wires behind the poster designed by Danielle.
Betsy gives a thumbs up from the ladder in front of posters by Madison, Pearl, and Max.

Thursday, September 22, 2016

Wings of Color: Magic Happens at Moody Gardens

It’s a beautiful day at Moody Gardens here in Galveston, Texas, the site of our 5th Annual Art in the Gardens festival sponsored by VSA Texas and Moody Gardens. This free event for schools gives students with disabilities an opportunity to show off their creative side through interactive art stations. This year’s theme is "Wings of Color" and we have over 15 local art groups and 4 performance groups providing activities and entertainment for these kids.

Well we better start getting busy setting up. The schools, performers, and art groups will be arriving soon, and we got a big fun-filled event to put on!

We have an adhesive foam butterflies activity provided by The Galveston Art League:
The Galveston Art League table covered in clipboards and butterfly outlines 
A bin of brightly colored foam stars and other shapes
Making animal face masks with Tide Way. Got those creative juices flowing!
Coloring and cutting out various animal face masks
Hey, I see some dancing going on by the Down Syndrome Association Pantomime Dancers.  Fabulous costumes! The kids are loving this.
Pantomime dancers donning circus costumes
Another pantomime dancer in a colorful tutu carefully walking an imaginary tightrope
More pantomime dancers, this time dressed as cars
Oh my gosh, it’s a Penguin Mascot from Ryan's RazzMaTazz! Maybe I can get his autograph, see what kind of fish he likes and if he has a girlfriend.
The penguin mascot greeting one of the kids
Where are all these bubbles coming from? Why it’s from VSA Texas' own bubble making machine attached to this wheelchair. Bubbles everywhere!!
The wheelchair bubble maker attachment blowing bubbles in all directions
More bubbles!
A big shout out to all the volunteers provided by Moody Gardens that are working hard to make this such a special day for all the kids!
Someone dressed up as a bright blue and yellow bird. A penguin admirer? 
Ah, I think it’s lunchtime now for us as well as the kids, but I don’t know, they are loving this live music provided by School of Rock. Look at some of these kids' moves. They know how to rock!
A student grooving to School of Rock with the help of a teacher
Well, it seems like we just got started and now it’s pack up time and thank you's to do for all our great participants. We saw many creative expressions on this year’s theme “Wings of Color.” The kids are off now to see the Rainforest Pyramid compliments of Moody Gardens. This event has been a delight every year and the art community always pulls together to donate their time and creativity in making this event so special for the kids and their families and teachers. Galveston is such a welcoming and beautiful city here on the waters behind Moody Gardens, so magical.
The VSA team behind the magic: Janelle, April, and Lynn
See ya next year!

Thursday, September 15, 2016

Call Me Disabled, or: How I Learned to Stop Worrying and Love the Word

I first heard about the movement to do away with the word "disability" ten years ago from a peer in California. His problem was with the prefix "-dis" which according to most dictionaries means some version of "a negative or reversing force." I don't quite remember what he had in mind to replace  "disability" with – it might have been "differently-abled," "uniquely-able," "special needs," or even just "ability" – but I remember being supportive, nodding in agreement, and wishing him luck in that struggle. After all I was eighteen, fresh out of the Youth Leadership Forum, and filled with tremendous pride in this community of which I was a part. So if my disabled friend wanted to get rid of the word "disabled," I thought more power to him! But I also remember thinking as time went on, "Is that really the most important issue affecting people with disabilities? What about attendant care? What about people still locked away in institutions? What about accommodations in school?"

Several recent experiences, culminating with the non-disabled host of a radio program about the Americans with Disabilities Act (ADA) devoting airtime to articulate why we should replace the word, have brought the issue back to mind, and I have come to believe that the words we use to describe ourselves are more important than ever, only I believe we instead need to embrace the word "disability" and discard the others. Here's why:

First off, I adhere to the social model of disability, which means that I am not disabled by Muscular Dystrophy but by the society that refuses to include me. In this way, my actual "disabilities" are stairs, heavy doors that don't open automatically, unlivable personal care attendant wages, the lack of affordable, accessible housing, the cost-cutting practices of insurance companies and government agencies. This list is by no means exhaustive, but the idea here is that if these problems did not persist in my life, I would not feel "disabled," and I honestly wouldn't even think of myself as "disabled." And if we do away with the word disability in favor of a soft alternative with an opposite meaning, we may risk losing this social perspective which is at the core of the disability rights movement.
 Holding my hands up in terror as I sit in the shadows before a steep staircase.
I think the stairs are the real problem here.
Disability is more than just a word. It encapsulates a movement, a culture, and a source of pride for the millions of us worldwide who identify as members of the disability community. When I hear the word disability, I feel good because it refers to my brothers and sisters and some of my greatest role models and friends. Taking ownership of the word – and the identity – is akin to showing solidarity with the community and helping to preserve its history and culture. Moreover, proudly using the term, rather than skirting around it, actually strengthens the community, validates its experience, and shows people without disabilities that a disability is not some terrible, scary, or shameful thing. Disability is a fact of life that nearly everyone will experience at some point in their lives, so it benefits everyone when we make the world a more accessible and inclusive place.
On my first ADAPT action. Disabled and proud!
But isn't the word disability necessarily negative? In short, no. I don't believe disabilities are viewed negatively because they're called disabilities; they are viewed negatively because they have been represented that way and thought of in that way for as long as we can remember, and everything from books and TV shows to movies and other media reinforce that perception. If we simply change the word, the ableist structures that oppress us will persist, especially if we distance ourselves from the label of disability at the prodding of those without disabilities. We need to attack ableism at its core, and we do that by shouting "disabled and proud!"
A blast from the past: long-haired,
18-year-old me and stranger dog checking
out the accessible entrance.
Of course this is only one disabled guy's opinion. Ultimately I believe each individual should determine how they personally want to identify – be it "unique ability," "disability," person first, identity first, or not at all – as long as they have complete autonomy to do so. But if you call me anything, please call me disabled.

Feel free to share your own thoughts in the comments section below, or explore the various perspectives on this complex issue by reading these other articles:

Thursday, September 8, 2016

For All The Writers Out There!

Originally posted July 28, 2016 at Reposted with permission.

Stop Looking for Something to Be Wrong!

Sit DOWN, and Write!

AND Look for What’s Right in Your Life.

Because there is more right than wrong, isn’t there?

My name is usually Nicole Cortichiato, but sometimes I use my pen name, Nia Spaghetti. I’m also a person with a disability and a writer. I am going to talk to you about getting YOUR stories out there and my writing process.

What have I written? Fiction, flash fiction, memoir, children’s books (below), plays, and poetry.
The cover of my first children's book, "The Independent Hand"

Where have I been published?
  • Austin Rio Review
  • Pen to Paper Contest (2nd place)
  • Badgerdog (Public library writing program)
  • Imagine Art Artist Retreat (Directed and wrote two short plays)
  • Helped write for TILT Performance Group’s production of “Free Patterns”
  • And I’ve self published

My writing process
  • I like to write in the morning, always with plenty of coffee and some breakfast.
  • I didn’t start writing seriously until 2011. By serious I mean actually finishing my stories and doing something with them. Before then, I just journaled a lot.
A tiny plate of eggs and bacon in the palm of my hand

This is how I make it happen:

1. I take creative writing classes at Austin Community College! I swear by this! Favorite teachers: Sidney Brammer and Charlotte Gullick. Why take classes?
  • Because you get to learn new things, see your growth, and because there are assignments, readings, and deadlines.
  • You can take as many classes as you like, you can even take the same class more than once.
  • You always have to hand in a portfolio of your work at the end of the semester. Yeah! Finished pieces!
  • It is required for you to submit your pieces to literary magazines. This is good exercise for any writer.
  • You can also take these classes online. Woohoo! Trust me, it’s easy to learn.

          2. I attend writing and storytelling events!
          • Open mics: These are crucial if you’re a writer. Listen, learn, then participate. Reading your work out loud is super helpful.
          • Storytelling events: Bookstores like Bookpeople, Malvern Books, or BookWoman have regular author events. The Writers League of Texas is another place to learn, and you can volunteer there too.
          Reading at the Lion and Pirate Open Mic

          3. I joined a writing group where we critique each other’s stories.
          • Make sure before you join a writing group, you familiarize yourself with the art and rules of critiquing someone’s work. Bottom line: you want to encourage someone, not crush their dreams. For example, say what worked in a piece instead of what you hated.

          4. I meditate before I write!
          • I believe we have to own what we put out in the world so I seriously think about what I want my writing to do for people. How do I want them to feel or grow? I meditate at least 10 minutes before I write.

          That’s it folks! Now, what’s write with you today?