Do It Myself Blog – Glenda Watson Hyatt

Welcome AUDI 546 students!

Thank you for the opportunity to share my communication story with you this morning. As promised, here’s the transcript from my presentation.

In addition, here are several posts you might find of particular interest:

• The iPad as an Affordable Communicator: Initial Review
• The iPad: Cheap and Disruptive AAC?
• The iPad: A Cool Communicator on the Go
• Wanted: AAC Role Models
• Valuable Communication Lesson Learned While Sitting in the Dental Chair
• From a Speech Impairment to a Motivational Speaker: How Did I Get Here?
• Life with a Speech Impairment: A Toolbox of Communication Methods Required
• I Can Communicate, But Is My Voice Being Fully Heard?
• An iPad and Proloquo4Text for Delivering Acoustic Presentations: The Review

If you enjoy what you read, I invite you to sign up to receive my blog updates via email:

All of the best to you. Thank you.

With headaches so painful I felt like I would puke, an optometrist appointment was reluctantly made.

Reluctantly because my last appointment three years ago left me feeling devalued and depleted, and took all of my inner strength not to burst into tears.

This feeling had nothing to do with the condition of my eyes, but, rather, the ill-prepared, unenlightened way the optometrist communicated with me and my jerky, constantly moving, speech impaired body.

After that disastrous appointment, I wrote an letter to the optometrist and hand delivered it to the office. Even though I requested that the letter be placed in my file for next time, in preparation for this latest appointment I printed a copy to give to the next optometrist.

I was somewhat hesitant to hand the letter to the new-to-me optometrist because I didn’t want to assume he was as unenlightened as the previous doctor. I then realized the exam would have more of a chance of going smoothly if I gave him a fair chance to succeed. I handed him the letter.

Autobiography: amzn.to/U6N5uW
Blog: www.doitmyselfblog.com
LinkedIn: www.linkedin.com/in/glendawatsonhyatt
Twitter: @GlendaWH

October 19, 2012

Dear Optometrist:

After my eye exam on Monday, October 15^th, I left the office feeling devalued and depleted. I am hoping by sharing the following information, the next exam will go smoother for both of us.

As you might know, I have athetoid cerebral palsy. For me, this means I lack muscle control and coordination. My physical movements are jerky and involuntary; one body part or another is in constant motion. My speech is also significantly impaired, yet can be understood by individuals who take the time to listen.

However, my hearing, understanding and cognition are not affected. There is no need to speak loudly, to repeat yourself or to use simple vocabulary for me to comprehend.

Next time I will grab my iPad from my scooter basket before my scooter is moved out of the way so that I have a more effective means of communication at hand.

My head control is tenuous at times. When conducting the eye pressure test and other such tests during which my head must remain still in a certain position, it might be helpful to have someone hold my head steady.

My eyes closing when something is approaching is a strong, uncontrollable reflex. Repeatedly stating that I need to open my eyes for the eye drops is not productive. Perhaps another method can be found to achieve the same result.

Please keep this letter in my file so that it will be handy for my next appointment.

Perhaps in that time you could consult with colleagues and other optometrists for further suggestions on how to best serve patients with cerebral palsy and other neurological disorders.

Working together will ensure successful care for my vision.

Respectfully,
Glenda Watson Hyatt

The optometrist read the letter, thanked me for the information and proceeded with examining my eyes. He was extremely patient when my head twitched like a bobblehead that had just  downed a few cups of espresso.

However, perhaps “…my hearing, understanding and cognition are not affected” was not written clearly enough in the letter as he made a great effort to gesture while he was talking. He went as far as to write “2012” on a small Post-It note when he asked if my last glasses were in 2012.

In Don Miguel Ruiz’s The Four Agreements, the third agreement is: "Don’t make assumptions."

Don’t assume that I do not hear or do not understand because my speech is unclear or because I may communicate in another manner.

Making that assumption really does say more about you than it says about me. And, honestly, it does not portray you in your best light.

Asking me, ”Can you hear and understand me okay? Is there anything else I need to do when communicating with you?” would portray you in a much more enlightened light.

On the bright side, this optometrist would make a fantastic partner while playing Charades.

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

in July 2010, I had the pleasure of presenting on a panel Living with a Disability in the Web 2.0 Era at the Plain Talk Conference held in Alexandria, Virginia.

While at the event, I met two women who worked in the web accessibility field in Boston. Upon parting, one of them extended an invitation to meet up, if I am ever in Boston.

My immediate thought, of course, was Yeah, right, when will I ever be in Boston?

Fast forward to May 31st, 2014: I was trying to navigate through the still-under-renovation Main Street Shytrain Station on my way to a speaking gig, when a song line suddenly popped into my head out of apparently nowhere: Please come to Boston.

Huh? That was the only line that came to mind from a song I know I knew, but I couldn’t recall any other words.

While I was searching for the new elevator at the far end of the expanded platform: Please come to Boston.

While I was scooting along the sidewalks, trying to concentrate on finding the venue in a part of town I wasn’t particularly familiar with: Please come to Boston.

Again, huh? Where was that coming from? And, perhaps equally as important, what did it mean?

(Welcome to the inner workings of my brain! Total chaos most of the time.)

I managed to quiet the voices in my head in time to deliver my presentation; my second one using my iPad. And, yeah, I kinda rocked it!

Afterwards, Karen, my partner in crime since we were 7 year old Brownies, and I went to Starbucks around the corner. Karen, who also serves as my editor on speed dial, was excited to see me deliver a presentation live. Likely to prepare herself for the next round of editing, she asked what was the next speaking gig I had lined up. At that point, my schedule was open, which is kind of an empty feeling for someone who is trying to get her speaking career going.

While Karen checked her phone for an email message she wanted me to read, I took advantage of the free wifi to check Facebook. Much to my delight, there was a private message from Laura Fitton, who I had first met as @Pistachio on Twitter years ago and then met in person at a BlogWorld Conference in Las Vegas.

She messaged me to invite me to do a 12-minute Bold Talk on any topic I am passionate about, much like a TED Talk. This would be at InBound, with an expected registration of 8,000. The Bold Talks take place in a room with a capacity of 1,000! (I had just finished speaking to a room with 20 attendees, max.) In Boston.

Seriously?!

I am presenting my Bold Talk “Go Beyond: Stare Your Fear in the Face and Boldly Go for It!” at INBOUND 2014 next Wednesday, in Boston!

Boston, here I come.

Over the years, various songs have been anthems or theme songs for my life. These tunes either mark milestones or help me navigate something I am going through.

My current theme song is Rod Stewart’s Can’t Stop Me.

Why does Rod’s song about how he got started in his singing career bring me to tears as I launch my motivational speaking career?

Back in my early years at university, I spent my second summer semester “learning how to use the microfilm and the microfiche in the library just in case I needed to use that technology to research a paper” – yes, I am that old! And, really, there wasn’t much else to do during simmer semesters atop Burnaby Mountain.

Actually, I was searching for anything and everything I could find about Rod Stewart, who I had fallen in love with during the 1989 American Music Awards. Yes, i was also a late bloomer! My excuse: I was raised on country music.

I spent a small fortune on printing that summer. I also neatly typed each article reference on post-it notes; obviously I had more “free” time back then. I even wrote to his record company, requesting 8×10 glossies.

But I digress.

I became fascinated with his career, particularly how he got started; how Long John Baldry discovered Rod while he was playing harmonica in a train station late one night (not seeing Long John perform while he was living in the area is one of my few regrets), and how, by fluke, a radio disc jockey played Side B and Maggie May launched Rod into stardom:

I was singing in the pubs
Was singing in the clubs
Then along came Maggie May

~ Lyrics from Rod Stewart’s Can’t Stop Me

Around the same time I also had a subscription to Rolling Stone magazine. Grabbing a newly-arrived issue and a cold can of Coke and heading to the spot just above the football practice field was one of my few opportunities to read something other than boring university textbooks. I was intrigued with the behind-the-scenes side of the music industry; how the formation of bands was rather fluid and intertwined was fascinating.  

At that time, my fantasy was to become a rocker chick with a searing electric guitar, but, sadly, this white gimp chick has no rhythm. My somewhat-more-realistic dream job was some kind of clerical or office position at the Little Mountain Studios – a local studio where big names like Aerosmith, Bon Jovi, Bryan Adams and many others came to record. I was devastated when the studio suddenly closed; that dream died before I had the opportunity to even pursue it.

I am the kind of concert-goer, when I can afford to go, who enjoys arriving early to watch the last minute set up. And then, afterwards, while I am waiting for the crowd to thin out before I head toward the exit, I watch how quickly the roadies dismantle the lighting and stage:

Now the seats are all empty
Let the roadies take the stage
Pack it up and tear it down
They’re the first to come and last to leave
Working for that minimum wage
They’ll set it up in another town

~ Lyrics from Jackson Browne’s The Load Out / Stay

Ever since beginning to entertain the thought of exploring the possibility of becoming a professional speaker, I have felt an affinity with the careers of singers. Those who have paid their dues by playing the smoky backrooms and who have worked their way up, until they finally got  their lucky start. Not like many of the performers today who gain, what seems like, instant fame.

As I see it, the singer and the speaker does the same thing: move, touch, motivate, inspire, educate, rally, entertain. The only difference is one puts the words to music.

The careers of these old rock n rollers – and country singers, too – have kindly provided me with the roadmap for my speaking career. I am willing (and have been doing) to speak to those groups in small, back rooms, in exchange for “a token of our appreciation”. Those gigs are affording me the opportunities to find my voice as a motivational speaker.

The way I present using a text-to-speech app on my iPad and my “uniqueness in movement” (particularly when I am nervous) doesn’t really fit the image of what a motivational speaker looks like. I totally relate to Rod’s beginnings:

"We can’t sign you, son
‘Cause you don’t fit in the mould.
It’s your hair and your nose and your clothes."
I said, "Thank you gentlemen
For this opportunity.
Now move on down the road."

In time, with enough practice, enough massaging of my message, enough confidence in finding my stage presence, my Long John Baldry or my Maggie May will come along.

They can’t stop me now
The world is waiting
It’s my turn to stand out in the crowd
They can’t stop me now
The tide is turning
I’m gonna make you proud

We’re not gonna take it
No, we ain’t gonna take it
We’re not gonna take it anymore

We’ve got the right to choose and
There ain’t no way we’ll lose it
This is our life, this is our song

~ Lyrics from Twisted Sisters’ “We’re Not Gonna Take It”

Individuals with communication disabilities, which affect how we speak or understand what others are saying, typically experience inequality in employment, healthcare and numerous other situations on a daily basis. We are often treated as if we are hearing or cognitively impaired, which is not necessarily the case, and we are regularly discounted,  devalued or, even, dismissed.

Access to effective communication is a social justice issue, where social justice is defined as "… promoting a just society by challenging injustice and valuing diversity." Social justice exists when "all people share a common humanity and therefore have a right to equitable treatment, support for their human rights, and a fair allocation of community resources." In conditions of social justice, people are not “discriminated against, nor their welfare and well-being constrained or prejudiced on the basis of gender, sexuality, religion, political affiliations, age, race, belief, disability, location, social class, socioeconomic circumstances, or other characteristic of background or group membership" (Quoted from What is Social Justice?)

As an individual with a significant speech impairment, I have experienced inequitable treatment in countless ways. The most impactful have been in the areas of employment and healthcare.

It still irks a back corner of my mind that I am unemployed and surviving on social assistance because I couldn’t find an employer willing to look beyond my jerky movements and difficult-to-understand speech to give my abilities and skills a chance. Actually, it sucks the chocolate chip right out of my cookie that after five years at high school and seven years at university, working hard to keep up (and sometimes surpass) my classmates and friends, only to watch them land jobs with decent salaries, Christmas bonuses and pension plans while I’m still stuck on social assistance, labeled as unemployable. I have no doubt that my speech impairment played a huge role in acquiring that employment status, but proving it is a different matter. After all, that would have been social injustice. Discrimination, which is illegal.

Thankfully, i have found other ways to put my skills, talents and passion to use, in service of others. With perseverance and current technology, I have found a way to become a motivational speaker to share my message with audiences. (I love the irony here!)

I remain confident that my rightful compensation will eventually find its way into my bank account. And, after all of these years of un- and under-employment, that will be one juicy Christmas bonus when it finally does come.

Being self employed, I have been fortunate to surround myself with people who believe in me and who know I am capable and have much to offer. For example, in the next few weeks, I have a couple of podcast interviews. These solopreneurs are willing to give me and the technology a shot in order to share my experience, my story with their audiences.

Unfortunately, I do not have that same latitude in surrounding myself with people who believe in me when it comes to my healthcare. Oftentimes I need to deal with healthcare professionals as they come; I have very little choice. And, frankly, these “professionals” have no clue when it comes to interacting with an individual with a speech impairment or, for that matter, any disability. (Again, the irony.)

As one example (of many): on one trip to the Emergency Room when I had badly injured my foot, the nurse indicated that my husband Darrell had to go back to the waiting room because there wasn’t enough space for both of our wheelchairs.

Darrell explained that I needed him for communication purposes. But, once he relayed how the injury occurred and other necessary medical details, he was told to leave. The nurse assured him that she would come get him if he was needed. None of the other patients’ companions were forced to leave.

In that moment I wondered what were my patient’s rights. Patients who are Deaf wouldn’t (or shouldn’t) be denied access to an interpreter. Non-English speaking patients requiring a translator would definitely not be denied one; that would hit the news for sure.

Yet, I, with a significant speech impairment, was denied my means of communication. Darrell did hand me my iPad before leaving, just in case, but I wasn’t sure I could coherently type because I was in so much pain.

In this instance, I was suffering from only an injured foot. What if it had been serious or, even, life threatening? Would I have been still denied my means of communication? When my well-being or life is at stake, that is social injustice!

This needs to stop. Now. People’s well-being and lives are at stake.

For this reason and many others, Communication Disabilities Access Canada (CDAC) is launching a 2.5-year national project Communication Access Now (CAN) to promote communication accessibility for people who have speech and language disabilities.

How can you become involved?

Check out the education and resources about making goods and services accessible to people with communication disabilities. Like them on Facebook and follow them on Twitter.

If you are in Vancouver, BC, on Monday, March 17th, please join us for the Communication Access Now event – an information session and a rallying of the people. To be held at the Creekside Community Recreation Centre, 1:00-3:00pm.

“We’re not gonna take it anymore.”

Our voices will be heard. Our voices need to be heard.

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