Coming Out of the Silence
Living with cerebral palsy, my lack of muscle control, limited hand function and inability to walk without falling isn’t my biggest frustration. My biggest frustration is my lack of easily understandable speech. I speak Glenda-ish and only a select few understand this unique dialect. To the rest of the world, I am “non-verbal” – a point my dear husband Darrell vehemently disagrees with, particularly when I have something on my mind!
Being “non-verbal” has led to isolation and loneliness. Without clear speech, simple interactions with other people are difficult. And when people do hear my speech, they mistakenly assume I am deaf or cognitively impaired; neither of which can be further from the truth.
I was silent all through high school and university, speaking to only a small handful of friends who took the time to learn Glenda-ish. I typed out questions to teachers ahead of time. I never answered a question in class, even though I frequently knew the answer.
In groups, I can feel so totally alone. I remember being at one conference, in a roomful of approximately 400 people, and I felt immensely alone and invisible. Ironically, the conference was for employers eager to “do the right thing” by hiring people with disabilities! I would have thought they would have made the effort to get to know me to enhance their knowledge and understanding, and even possibly to offer a job. Silly me!
Along the way, well-intending people have suggested that I try various communication devices. But, being the stubborn one that I am – to which my husband can also attest – I graciously refused. Being long before Microsoft and its Speech Application Programming Interface (SAPI), I felt the early speech synthesizers were more difficult to understand than I was. I opted to stick with my typed notes, my alphabet card and my silence.
Had I seen and heard someone like Stephen Hawkings, the world-renowned astrophysicist with Lou Gehrig’s disease, give a speech using E Z Keys way back then, I may have been more amenable to giving such devices a shot. The power of leading by example and mentoring is sadly overlooked when introducing young people to assistive technologies.
The Internet has opened a whole world to me. I can finally communicate with others without my disability getting in the way. Oftentimes, others don’t even know I have a disability, or if they do, they don’t know the extent of my disability. This means we can have more meaningful exchanges as we can bypass the misperceptions and misunderstandings of my cp and get right to the topic on hand. It is such a liberating feeling! And, it is amazing who all I have connected with online.
Email, online conferences, discussion forums and webinars enable me to participate fully in the virtual world and to lead an exciting career. However, although this technology means greater inclusion in participating in the virtual world, there is a risk of becoming further isolated from the real world. The irony is the technology tools that allow me to be accepted into the world as an equal, can also isolate me even more as I draw further and further into the “virtual world” with less and less “real life” contact with human beings face-to-face.
A couple months ago, I temporarily escaped Hermitsville when I was asked to speak at SPARC BC’s “Beyond the Obvious: Exploring the Accessible Community Dialogue”. My initial thought was, But I don’t give speeches. I can’t. But since I was raised without can’t in my vocabulary, that was a fleeing thought and I quickly turned my thought to how can I do this?
Thanks to Darrell and his extensive knowledge of free assistive technology, I had been using ReadPlease for a couple years to proofread my writing. ReadPlease reads aloud text that is copied into the program. I thought, Maybe I could put ReadPlease onto my laptop and have it read aloud me speech for me. I hesitantly agreed to speak. Unsure if the technology would actually work, I took a printed copy of the speech with me, just in case I needed someone else to read it out for me.
Finally it was my turn to take the stage. Being on stage alone for the first time in my life, with two hundred eyes staring at me, I so wanted to run, and I mean run. But, I didn’t. I stayed and gave my speech. When I was done, I left the stage, trembling. I had just given my first ever speech! And the technology worked! Yessss.
Then something amazing happened afterwards, for the rest of the day. People actually came up to me and spoke with me. I was heard for the first time. I was no longer invisible, no longer silent. It was amazing! An unexplainable feeling! A feeling I would like to experience again. I would like to give more speeches. I would like to be heard again.
This weekend I am putting the final touches on my responses for an audio interview scheduled for Monday morning with Psychjourney. When I was first approached to do this phone interview, I again initially thought, There is no way. This is so isn’t what I do. Couldn’t we simply do the interview by email or even by instant messaging, and then post that exchange on the website? But, I’ve never been one to back away from a challenge or to turn down an opportunity.
It remains to be seen (or heard) if ReadPlease will be clear enough over the phone. We will see. But, if the technology works in this manner, this opens a whole new world to me. Never in my wildest dreams did I imagine I’d be giving speeches and phone interviews! I no longer need to remain silent.
You have the thoughts and words, it is just how you express them which is unique. You can andwill show other the way. The more things we try the more we can do.
The fredom to be who you are is here dont be afraid to try it. The journey is worth it.
Comment by Darrell — July 9, 2005 @ 8:57 am
Thanks Darrell,
Because of your encouraging and supportive words for the past seven years, I am willing to try these opportunities that come along that are so not what I do. I am now seeing that these opportunities can be added to my can do reportoire.
I now wish I had listened to you when you said I show buy the E Z Keys version with voice. Back then, I didn’t see myself using that feature. Now I can. I will publicly admit that sometimes husbands are right!
You honestly know about assistive technologies. I sincerely hope you have the opportunity to open doors for others as you have done for me.
Thank you, Darrell.
Comment by Glenda — July 9, 2005 @ 9:57 am
Hey,Glenda,
this is amazing — a real revelation for me! I know we’ve worked very well together, using mostly emails, etc. — amd we surely don’t let the speech “constraints” stand in the way of our getting the job done, but this may well open up a whole new world for our work — and even our friendship. I feel really excited about this — I want to learn myself and I also want to share this with others with whom you and I may be working.
wonderful!
so i’m off to Ecuador shortly, but let’s hang out when I get back, ok? August 6.
marylee
Comment by marylee — July 9, 2005 @ 2:58 pm
Glenda - I’m SO glad this new world has opened up for you. I LOVE our email discussions and chats and am thankful for the technology that allows us to communicate, but more importantly it has allowed us to become friends - and for that I’m VERY grateful.
You have taught me SO much and I’m continuing to learn from you - and your sweetie Darrell too!
Wendy
Comment by Wendy McClelland — July 11, 2005 @ 5:13 pm
Dear Glenda; I was lucky to have this emailed to us here at SPARC BC. I now know that our Dialogue on Community Accessibility has reached it’s goal! We have made our event accessible in the true sense of the word, and I am really greatful that you have made that possible! Thank you for not having the word “can’t” in your vocabulary, and thank you for now officially being part of the SPARC BC family! Isn’t it great to know that there are people outthere who believe in us, they see what we can do, and not what we cannot!
Emese
Comment by Emese Szucs, SPARC BC — July 12, 2005 @ 10:14 am
Well, it appears that your only disability is a lack of understanding of the word “can’t” and that is a good thing. Your strength of character humbles me.
Keep up your good work,
Jules
Comment by Jules — July 20, 2005 @ 9:56 am
Jules,
Thanks for your kind words. Tell me I can’t do something and I’ll find a way to prove you wrong! (grin)
The interview went amazing well! The synthesized speech was clear enough and understandable over the phone. I still need to post it to my site with a text transcript. In the meantime, have a listen to the interview with Deborah Harper, President of Psychjourney.
After the interview, a brilliant idea hit me - I swear it was divine intervention! I realized I could convert text to MP3 files and take them with me to play to anyone anywhere! That means I could have business spiels, speeches etc with me, which opens a whole new world to me! Now I simply need to the find a way to mount the mini speakers to my scooter and I’ll be set to network the Glenda way!
The future is mine!
Comment by Glenda — July 20, 2005 @ 10:29 am
Great post. All too often people with disabilities can become invisible - especially online. I went to Wright State in Dayton, Ohio which focused big-time on accessibility - there was one student getting an advanced science degree and she was bound to a motorized gurney with respirator. Here in Chicago I don’t see wheelchairs as often. The city gets more accessible each year (I believe the Mayor’s daughter or granddaughter has CP…?).
Sometimes simply being visible is so vitally important. Cheers.
Comment by Andy — July 20, 2005 @ 11:52 am
Hi Andy,
Thanks for stopping by!
I will admit I am one of those people with disabilities who has become invisible to a degree and I need to remind myself to drag myself out of Hermitsville every so often. However, it can be much easier to be myself online. My disability becomes less of a factor and I am free to be the real me without needing to deal with people’s heebee-geebees and misconceptions about my cerebral palsy.
Speaking only for myself, living in the real world and the virtual world is like living on two separate planes or dimensions simultaneously. I feel I am treated differently in the two worlds, even though I am the same person.
For example, Monday I went grocery shopping. No big deal, it is a normal, everyday activity and everything along the way is physically accessible so that wasn’t an issue for me. At the checkout, the cashier noticed my sunburn and essentially scolded me for not wearing sunscreen. Then, out in the parking lot I stopped to shift bags before scooting home. A lady kindly asked if I needed help, to which I cheerily replied, “No thanks.” She then proceeded to help. When I was done, she praised me, “Good girl! You’re doing good.” Not sure how to reply politely, I simply gritted my teeth and smiled. Ironically, she was in a scooter too. I think the main obvious difference was that she had clear speech and I don’t, and there is this commonly held assumption that speech is linked to intelligence. Since my speech is faulty, then so must be my cognitive ability, and that seems to give people to treat me like a six-year-old. It baffles me every time, particularly since I am far from being six by a few decades!
Hats off to Chicago’s mayor Richard Daley’s commitment to making the city more accessible! That will definitely help people with disabilities to get out and about. Just keep in mind accessibility means more than physical access. I like to use my AAA Principle - accessibility also involves awareness and acceptance of people with disabilities. People’s attitudes and acceptance of those with disabilities can go a long way in making a place feel accessible and drawing us out of Hermitsville.
Cheers,
Glenda
P.S. In increasing accessibility to people with disabilities, perhaps Mayor Daley can have a second look at his website. Looking at the site quickly, I noticed a few things that could be done to increase access.
Comment by Glenda — July 20, 2005 @ 8:32 pm
Great story - posting it on my personal blog.
Comment by Andy — July 25, 2005 @ 11:57 am
Thanks Andy! Simply a typical story in the “daily life of…”
Comment by Glenda — July 25, 2005 @ 12:42 pm
Very cool post, Glenda.
Comment by David — July 26, 2005 @ 7:41 am
Aloha Glenda,
Hermitsville! Yes! We have that town here in Hawaii too!
Looks like we all live in the same world, no matter where we’re from,
and no matter what challenges we face.
It’s exciting to see the world of possibilities that open up for people
either for those facing a physical disability - or a physical location challenge -
like many living in Hawaii face.
Before becoming a Business Coach, I was a Director for a Social Service agency in NJ,
where we’d advocate for people with disabilities, and find jobs, opportunities, housing, etc.
The more assistive devices came out, the more exciting it was to see barriers come down.
I loved reading your story - you have SUCH a way with words. I came through to your site
after seeing your picture and comments on IVWCC. Your laughing picture connected with me instantly,
as my tag line is: Learn, LAUGH, Profit! (TM) And it’s great to see a business woman like you doing just that!
Here’s to your success!
May you be a role model to many… and a trail blazer for yourself.
I’ll see you in Hermitsville again soon. (I’m just afraid it’s going to get really crowded there soon!
- with all the folks being transported there from the Internet - what WILL we do for solace and quiet?
:+)
Comment by Coach Deb — September 12, 2005 @ 12:27 pm
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