Do It Myself Blog – Glenda Watson Hyatt

For the last while – even for the last couple of years – I have had this restless feeling of wanting to do more than disability and accessibility-related work stuff. I mean, disability and accessibility will likely always be part of what I do because it comes as part of the package of life with cerebral palsy. But I want to do something more than that. Something bigger.

I knew I wanted to take what I have learned from my life with a disability to help other people experience their lives more fully. But I didn’t yet know exactly how to explain what that really meant or what that might look like.

That wasn’t until a few weeks ago…

Friends were over to celebrate Darrell’s birthday. They mentioned spending a month in Whistler while their house was being renovated.

I asked if they had done the zipline – the one I’m dying to do, once I figure out the logistics.

They replied they had walked up as far as the ticket booth, but they were scared to go any further. 

I pulled out my iPad and played the video of me ziplining across downtown Vancouver: 

They were amazed. Impressed. Bob asked a few questions.

Then Bob turned to Pat and said, "Hmm, maybe we could do that.”

"THAT is what I want to do!" I heard those words so clearly. Darrell says he didn’t hear me say it aloud.  I am not sure whether I did say those words out loud or if it was my inner voice that keeps getting me in trouble.  Either way, I heard it.

The point isn’t whether Bob and Pat go ziplining, but rather that the next time they are standing on the edge of an opportunity and wavering, they go for it.

THAT is what i want to do in this next chapter of my life.

I’m not sure what shape THAT is going to take; my inner voice has yet to apprise me of the specifics. I do sense giving more (paying) presentations, with a motivational message, will play a role. My speaker site is in the works.

I welcome any thoughts you might have on figuring the specifics and next steps. Please share in the comments below.

To be continued…stay tuned.

To keep up with my adventures, musings and insights, be sure to subscribe to DoItMyselfBlog.com.

After my first red-eye flight, followed by my first significantly delayed, and, ultimately, cancelled flight, I finally landed in Philadelphia on the afternoon of Friday, July 27th.

My journey to the City of Brotherly Love actually began a few years earlier when, on a rainy Saturday afternoon, Darrell and I sat at the kitchen table and watched a Rocky movie marathon on Darrell’s laptop. Something about the scene where Rocky runs up the steps, which I later learned were at Philadelphia’s Museum of Art, with others joining him sparked something within me.

A little voice whispered, “I want to do that!” My initial response was “Yeah, right. Sure. How the heck am I going to do that? Get real.” I didn’t even tell Darrell because it was too crazy; and I’ve told him some pretty crazy stuff over the years. The thing is, once that little voice says something, unhearing it is not an option.

Fast forward to March 2010: I was in San Diego to present at the 26th Annual International Technology & Persons with Disabilities Conference (CSUN 2010). While exploring the Exhibit Hall and other displays, I came across a table of information about ISAAC: the International Society for Augmentative and Alternative Communication. I hadn’t even heard of ISAAC until that moment, which I thought was odd since I’m was now using my iPad for communication and was being drawn into the AAC community. I also learned their 15th Biennial Conference was to be held in Pittsburgh in July 2012. The young volunteer gave me a flyer about the conference and said, “Hope to see you in Pittsburgh.” Something about her genuine tone of voice planted another seed.

Given my limited American geography, I knew, at least, that Pittsburgh and Philadelphia were in the same State. Close enough. I quietly added “Climb the stairs at Philadelphia Museum of Art with the spirit of Rocky Balboa” to my bucket list more than a year ago.

Since the thought of attending ISAAC was now zinging around inside my head, I figured I might as well contribute to the conference conversation. I spent weeks writing a presentation proposal and submitted it. I didn’t hear anything. Then, with the deadline for submissions only two hours away, I decided to submit a second proposal, which was a quick copy-n-paste job from previous content I had written and I slapped on the cheesy title “The New AAC: Glenda’s Life-Changing Story Starring the iPad”. Wouldn’t you know it: the quick n dirty submission was accepted. Is there a lesson here?

I now had a reason to be in Pittsburgh. What was a few extra hundred miles and a few extra hundred dollars to stop by Philadelphia first?

On May 17th, 2012, I wrote a blog post to put “out there” my crazy idea of climbing the steps at Philadelphia’s Museum of Art in the spirit of Rocky Balboa. What followed was a flurry of tweets and emails: a tweet by my web accessibility colleague and friend John Foliot led to Kel Smith putting the wish-granting organization Wish Upon A Hero in touch with me. From there, Director of Wish Granting JamieLynn Storch worked her magic. People were coming from all directions to be involved. Plans were put into place. It was very exciting and somewhat overwhelming, and to think it all started with a seemingly crazy idea.

Even though I arrived at the Philadelphia airport three hours late, Wish Upon a Hero founder Dave Girgenti and Director of Programs Ryan Rendfry were there, as planned, to pick me up in the wish-granting hummer. Yes, a hummer!

I checked into Le Meriden, a posh boutique hotel in the heart of downtown and a mere mile away from the Museum of Art. I would definitely stay there again, if given a chance, because it was so nice not needing to fight with a so-called accessible room. The hotel gets physical accessibility.

Given that I hadn’t had an actual meal in I don’t know long, I then went searching for food, which is always a daunting task when alone in an unfamiliar city. Unfortunately, because of my late arrival, I missed the Amish sticky buns at the Reading Terminal Market, as highly recommended by my friend Char James-Tanny. However, I did happen across the Italian restaurant Maggiano’s, which seemed a fitting connection to the Italian Stallion, and with Glenda-friendly pasta on the menu. Bonus! I loaded up on carbs for energy for the next day, but decided to forgo drinking the six raw eggs the next morning; I wasn’t aiming for that much of an authentic re-enactment.

Not only was I famished, but I was also very thirsty. When I travel, I limit fluid intake because I do not have easy, if any, access, to a washroom while in the air. And, my unexpected extended trip meant an extended time without much to drink. With a glass of iced tea and a glass of water on the go, I was a two-fisted drinker that night!

With it still light out after supper, I went on a short photo wheel around the area — something I had forgotten I had done until I got home and went through my photos. (Yes, it was a seemingly long trip!)

At the corner of 16th Street and Benjamin Franklin Parkway, I was surprised to see what I assumed (and later confirmed) to be the Museum of Art. It was humongous! I was so tempted to go a few blocks further to get a closer look, but I didn’t want to spoil anything for the next morning. Besides, I still had to finish the email interview for the Philadelphia Inquirer reporter.

The next morning began rather early, especially given the three hour time difference. But I didn’t mind: excitement was building!

My walk along the Ben Franklin Parkway was pleasant and reminded me of my day in Washington DC — minus security noticeable everywhere.

Breakfast ended up being a few bites of a dry croissant and couple sips of juice across from the museum; not quite what I had envisioned before such a physical activity. Mysteriously, the croissant, juice and bottle of water then disappeared somewhere in the excitement. That’s how it goes sometimes.

"I am going to do what? Are you kidding me?"

But seriously, those steps are rather intimidating when staring up at them. For a nanosecond, I questioned what I was about to do. When the newspaper reporter asked how I was feeling right before we started, I replied, “Nervous.” Now was not the time to trip over my own feet, which has been known to happen.

The first step I took, with H.E.R.O. (Hero Emergency Response Operation) Justin Jack and Ryan, was rather wobbly and I am sure everyone was thinking, “Oh, ya, this is going to take a while.” I was certainly thinking that.

But once the Rolling Trumpet Ensemble from Rowan University struck the first few notes of the Rocky theme song “Gonna Fly Now” — yes, a band! —

and I found my feet…I felt like I floated up the first two levels!

After a quick sip….

Rocky Spirit author Felice Cantatore and Rocky impersonator Mike Kunda helped me the rest of the way. (Does Mike look like Rocky or what?!)

An increasing number of supporters cheered with each step I took…

This video shot by one of the 40-50 (or more) bystanders captures a majority of the climb:

Apparently we only took 7 minutes to reach the top of the 72 steps. (Karen, Craig and I took half an hour to reach the top of the 81 stairs at the Robson Square Zipline. We must have stopped for coffee along the way.)

(Yes, you do see my scooter in the right side of the photo. Three big, strong guys from the Rocky Spirit team carried my scooter up the Rocky steps so that I had a place to sit once I reached the top. The wheelchair ramp went only so far.)

Once I had nearly caught my breath again, the reporter asked how I was feeling in the moment. I uttered, “Awesome” mainly because it was the easiest word to say. But, in actuality, the word was “Indescribable!”

Indescribable because so many small moments had been pieced together to create that one moment and because so many people had played a role. I now had a view of Philadelphia that I had only seen in a 33 year old movie. How many people get the opportunity to experience that?

In my lifetime I have always made my own path, taken the road less travel, mainly because there was no one out in front leading the way for me. For a brief moment, it was nice to stand in someone else’s shoes — or footsteps — to absorb everything that Rocky represents.

One of my favourite photos of the day…

…standing between Rocky impersonator and author of Cue the Rocky Music, Mike Kunda, and boxing champion who went fifteen rounds with Mohammed ALI, Chuck Wepner, the inspiration for the Rocky movies. Can life get any better than this?!

Apparently, it can! After being in town for less than 48 hours, Kristin Holmes’ article about my climb appeared in the Philadelphia Inquirer. The hotel concierge gave me his Sunday newspaper to treasure.

I would like to sincerely thank everyone — many of whom were mentioned here, many more were not — who were involved in making this day indescribable. I am truly appreciative and will cherish the memories in my heart for many, many years to come. Thank you.

To keep up with my adventures, musings and insights, be sure to subscribe to DoItMyselfBlog.com.

Since doing the on-camera interview last week, I have been wondering how I can minimize “MASS” – “media-amplified spaz syndrome”, a term offered by fellow CPer Spashionista, that I am so stealing!

MASS bugs me. Every time any camera in the vicinity is turned on, MASS kicks in. It doesn’t allow me to put my best self forward. That isn’t to say I don’t have spaz out moments when there isn’t a camera around, because I do. Peanut butter often goes flying off of the knife at breakfast time in our house. Sometimes I think I could have acquired Parkinson’s Disease and not even know it by of my shaky cerebral palsy. MASS is more pronounced than the everyday spaz outs.

Anyway, the interview was done in two parts: 1) the question and response segment, and 2) the online demonstration segment. For the first part, the interviewer sat off-camera and asked me the questions. I responded with my prepared responses that were on my iPad, on my lap. The thing is, once I tapped play, I wasn’t sure what to do while the device spoke my response. I knew not to look at the camera, but rather to look at the interviewer. But what should I do? 1:30 minutes is a long time to sit still, especially with athetoid cerebral palsy. I remember Roger Ebert being quite animated while using his device when being interviewed by Oprah. I am sure that had I tried that, it would have looked like an extreme spaz out.

Likewise, during the demo, I went through a section of my previous week’s presentation because it addressed one of their questions. (Did I re-use content? You betcha!) Typically when I deliver a presentation, I make eye contact with members of the audience. That seems to (slightly) minimize the spazing. But this time I didn’t have an audience; only a few people watching from behind me, trying not to make a sound. Once again I didn’t know what to do. Do I stare at my computer screen and laugh at my own humorous bits? Or do I stare mindlessly out the window? What do I do?

After much thought and pondering, I have concluded that a portion of (perhaps an extremely small portion of) MASS in this particular situation is due to not knowing what to do, where to focus my attention. When talking people give an interview, ideally they focus on what they are saying and how they are saying it; that might help to divert some of their nervousness. Butt when a device on my lap is speaking for me, I don’t have the same diversion; I have time to focus on the fact that a really expensive camera is capturing every jerky movement, which, in turn, makes me even more self-conscious.

Once again I need to learn the rules and then figure out how to adapt them to fit my own jerky needs. Either that or write my dang own rules…before the next film crew encounter…!

Yesterday I had the pleasure of welcoming the film crew from the Fetzer Institute into our home and my home office.

This wasn’t the first time a film crew had been in my home. The first was many, many moons ago when the National Film Board of Canada filmed On Top of the World. (Oh, that brings back happy memories!)

And yesterday was likely not the last time I will welcome a crew with a mondo video camera into my home, but that is another post…quite possibly in the not distance future…

But it was the first time I had done an on-camera interview! Once again my iPad was put to the test. I was given the interview questions ahead of time and, after writing my text responses in Microsoft Word, I used TextAloud to convert the text to speech. I then emailed the audio files to myself on my iPad.

When I was asked a set question during the interview, I tapped the appropriate audio file and “Kate” spoke my response perfectly. I so love my Kate! We have done so many wickedly awesome things together.

But the one phenomenon that I really, really, really don’t like is how my body goes into “spaz out” mode whenever a nearby camera is turned on; the more expensive the camera, the more pronounced the “spaz out” mode. And telling myself to relax only accomplishes putting more focus on my body’s unintentional movement, which amps up the movement even more.

I have often wondered whether mastering a few acting techniques would aid in muffling this mind-body disconnect. This is something I would like to learn before I interact with the next film crew, so that when “Action!” is called, only intended action is put forth, or, less unintended action is caught on video.

Bags are packed and two presentations are about to be loaded onto my laptop, assuming I can resist this compelling urge to rewrite the rote-feeling introduction. Tomorrow I am off to San Jose to present to a group of web engineers at a large financial institution, and then at Open Web Camp IV on Saturday. I’m definitely getting my geek on this weekend!

I am then home for less than two weeks before heading out for my Philadelphia-Pittsburgh adventure. Climbing the “Rocky” steps in the midst of a heat wave: who’s brilliant idea was this?

In those few days in between trips, I am not only unpacking, washing clothes, re-packing, and getting re-organized; I am also getting my home office and adjacent living space ready for a film crew. Yep, a film crew!

The Fetzer Institute is producing a short (5-minute) documentary on web accessibility, which will be shown at their Global Gathering For Love and Forgiveness in Assisi, Italy in September, then subsequently made available on their website, YouTube, etc. Their production crew for the film has impressive credentials. The script writer in particular has done work for Frontline, MacNeil/Lehrer, NOVA, and others.

I am one of their interviewees. How I get myself into these things, I know not.

Thankfully I have already received interview questions and I will prepare my responses in text-to-speech, likely to be played on my iPad during the video interview. But one question requires some deep, reflective thought, which I haven’t had a chance to do, yet. I pose the question to you, my wise and insightful readers; consider this crowdsource thinking…

The Fetzer Institute’s work focuses on realizing and cultivating the power of love and forgiveness in people’s lives. Do you feel there is a connection between universal design, love, forgiveness?

Discuss in the comment section below while I go triple check that I have my passport, iPad charger, and…