What a Gift We are Given

When We Take the Time to Know Them!

In learning of the deaths of two members of our Bliss family/community this month, I could not help but reflect on the huge impression these two men have made in their respective communities. Justin touched the lives of  persons across Canada and in his home city of Ottawa. Chico made his impact in his home city of  Sault Ste. Marie. They both enriched the lives of those who knew them.

We are so fortunate – we who have the opportunity to know persons like Chico and Justin, who are unable to communicate through speech and who must work endlessly to share their ideas and feelings in some form of augmentative and alternative communication (AAC). From them, we learn about perseverance, bravery, drive, trust in the caring of others, humour, the inner strength of the human spirit. As AAC users, they tirelessly, and often relentlessly, persist on getting their message to us. 

I have witnessed this in so many of my friends who rely on AAC to communicate. What a wonderful bond is possible for those of us who learn to watch, wait and listen! 

As AAC professionals, WE shared the language of Blissymbolics with those who were nonspeaking, as they were developing their language. Later, THEY learned print and mastered voice output devices. THEY learned and effectively USED the AAC methods we gave them. THEY showed us their strengths and their individuality and shared with us their dreams and aspirations.  We are the fortunate recipients!

Remembering Dwayne Houle, (Chico)

By Elaine Windus

In the following tribute to Dwayne Houle (Chico), Elaine Windus recounts the determination and humour Chico displayed, and the joy she and others experienced in knowing him.

When I first met Chico he had no speech but he proudly showed me the most enormous communication system I had ever seen, attached to his wheelchair tray. Part of it was a Blissymbol display, with many large pages to flip over, but the other part had just as many pages with names of pop singers and bands, which he could read and find easily as needed. Yes, Chico’s ambition was to become a disc jockey. I remember one day when we spent our whole therapy session on adding one name (Sammy Hagar) as his spelling was not the best and I had to rely on guesswork and clues. But he was determined to have that name on his display and stuck to his guns.

At that time (1986) Chico was still in high school and I had just moved to Canada at the age of 35. Over the years we managed to reduce his display to a more manageable size by using different short cuts and techniques to access his symbols. He also embraced new technology as it was developed, mainly in the form of voice output devices. When he got his first one he informed me that he could now speak French and demonstrated this by selecting the symbol for “we”. Furthermore Chico was the first client I worked with who learned to use a computer, long before these became permanent fixtures in the administration department offices.

Chico was a client of the Algoma District Mental Retardation Service (now Community Living Algoma) where I worked as a Speech Language Pathologist, though he had no intellectual disability that I could determine. From the very beginning I was impressed with his positivity and his wicked sense of humour. I always looked forward to our sessions as I knew that he would always brighten my day, even when I was having a bad one. My predecessor Marquise reminded me of the time that she was working with him when he asked to have the f-word added to his display. The staff at his group home were outraged and did not want it put on, but Marquise told them that he too needed to learn when it was appropriate to use, just as a verbal person would, and complied with his request.

Chico was able to access his display with the hand that he had control over, but he had no control over his other arm, which was subject to wide ranging involuntary movements, and as he described it, had a mind of its own. He frequently told us he wanted this arm amputated, as it was no use to him. Failing that he wanted it put in a coffin. When he moved into a family home, his caregiver made him a black shiny hard case to cover it and attached it to his wheelchair tray. It served the purpose for a while, but was eventually removed as it caused chafing on his skin. But at least he tried it out.

Chico was a huge Soo Greyhounds fan for his entire life and held seasons tickets for all their games every year. He was a familiar and beloved figure, always seated close to the ice, and made many friends this way. He even got to meet Wayne Gretzky, his hero, on one occasion. Knowing nothing about hockey, this topic was one where I was not the best conversation partner, but he was very patient with me. 

Before Marquise handed Chico’s communication needs over to me, she mentioned in passing that Apple Computers was donating free computers to deserving individuals who were unable to afford them; you just had to write and ask for one. So Chico and I composed a letter telling the company a little about himself. He talked about how his physical disabilities were the result of a car accident when he was a young child. I asked him what he missed most since that time, thinking he would mention being unable to walk or speak, but no, Chico missed being able to make snowballs.

Apple Computers did donate a computer to Chico, an Apple II e. At that time there was only one computer store in town where it could be sent and they would not deliver or install it. So I picked up 3 large boxes (CPU, monitor and printer) in my car and took them back to his apartment to assemble. There I sat on the floor, screwdriver in hand, thinking that this was the last thing I expected to be doing as an SLP, but I would have a go at it anyway as he was relying on me. At that time you had to open up the computer and flip little switches inside it, following the instructions and diagrams provided. Anyway, both Chico and I finally got the knack of how everything worked, but we felt like true pioneers. While the computer was processing something we were waiting for, unlike the small icons used today, the words “THINKING” flashed on the screen in large letters. Chico thought this was a huge joke and kept asking me who was inside it. 

In his later years Chico preferred to be called Dwayne, which he regarded as his adult name. He developed a talent for abstract painting and enjoyed this activity immensely. He was generous with the finished works of art and donated them to all his friends as well as to fundraisers he wanted to support.

After I left Community Living Algoma in 2009 I did not see as much of Dwayne as I would have liked, but still kept in touch, asked how he was doing and visited him once in a while. Although his health had deteriorated in recent years and his mobility was considerably reduced as a result, he still maintained the same positive attitude to life and the same wry sense of humour. When I last saw him he proudly showed me his 50th birthday cards and we joked about him getting old.

So it was with sadness that I learned from a former colleague that she believed he had passed away at the age of 55, and this was then confirmed when I saw his obituary. Although he had a hard life with many challenges, Dwayne won the hearts of all who knew and cared for him, in both senses of that word. Dwayne made our lives so much richer for having known him, and I feel privileged to have been both his therapist and his friend.

In closing I would like to acknowledge the role that Blissymbols played in Dwayne’s life. He was a man with a lot to say and Blissymbols allowed him to express himself freely on a wide range of subjects. He used them in many inventive ways to get his message across and he was the most proficient Bliss user I have ever met. His life would have been very different without them.

Elaine Windus

Remembering Justin Clark

by Shirley McNaughton

In the video recording of my last interaction with Justin at my zoom birthday party, I could have edited out the many repetitions of a phrase that his body kept forcing him to activate. It would have been simple to edit out the repetitions in this short clip. But I want to remember, how this challenge was a part of Justin’s life. And he never gave up in delivering his message! He always persisted until his objective was achieved. For my party, Justin had prepared three sentences to transmit. He persevered until they were delivered!

Looking back…

Justin was praised by Michele Landsberg in The Toronto Star, in December, 1981, with the following statement:

“There are human strengths – of courage, of decency – that amount to giftedness. In these last months of the Year of the Disabled, able people like Justin Clark and Sue O’Dell have helped me grow a bit, and to recognize those gifts.”

Justin was described by Judge Matheson, who presided  at the court hearing in Perth in November, 1982, “We have recognized a gentle, trusting, believing spirit and very much a thinking human being who has a unique part to play in our compassionate interdependent society”.

Justin’s thick binder, containing the many articles written about him through the years, will be treasured within the Blissymbolics Archival Collection at the University of Toronto. It was a valued gift from Justin to BCIC.

After the court hearing in 1983, I wrote a tribute to Justin in our magazine, Communicating Together. In the 38 years since then, my warm and high regard for Justin has only increased. He demonstrated his “gentle, trusting, believing spirit” every time we were together. I wish it could have been more often! My memories of Justin’s times with us at the Bliss Learning Centre in Bala will always be savoured by me. He sang a rousing grace every night at dinner! He brightened the lives of all who knew him!

‘Justin Gives to us All’, published in Communicating Together , Winter, 1983, is online at https://www.cdacanada.com/resources/communication-supports-in-exercising-capacity-and-autonomy/about/experiences/, as a resource from CDAC, Communication Disabilities Access Canada www.cdacanada.com

Justin and Chico, each in their own way, gave much to those in their worlds. We who knew them will always treasure their lives, and we will always be grateful to have shared our lives with them! They each gave us a treasured gift!

Happy Birthday, Rebecca!

by Samantha Millar, Carolyn Henry, Glynis Henry, Julie Millar

Lets wish Rebecca a Happy Birthday on March 15th!! Rebecca’s birthday memories help us learn about different ways to celebrate birthdays.The following is from Rebecca with our comments.

Okay….people who don’t share my background always find this a little strange, but my very first birthday present didn’t come until the birthday I turned 9. 

You see, it is customary for us to really go all out for the birthdays of our elders- so twice a year, we had to dress up and we’d fill the entire restaurant where my 2 grandparents each got elaborate 10-course banquets and be given money from their guests. These were big, big deals that took up the whole day, and we’d do family portraits in the restaurant. 

 In contrast, children’s birthdays were never considered- no, you had to wait until you got old!! [Carolyn: Gee, I am glad I am not from your background.]

 What changed is that when I turned 9, an aunt who was more modern decided it was high time I received a present. Pretty sure no other kid in history was as thrilled as I to get a shirt for their birthday! I think it was my first exposure to a present meant specifically for me and only me. I hung on to that shirt well past the time I could still wear it- wish I’d kept it for Iris Hannah because by the time she’s old enough, that late 70’s style is sure to be fashionable again! [Samantha: I would never get rid of that shirt]

Yes, we had toys, and books, and board games, but they were “family gifts”- no one kid could lay claim to it; it was meant for all. And being the last of 5 kids, (not to mention the 3rd youngest of 15 cousins), pretty much everything that eventually made its way to me had first filtered through many others. [Samantha: I knew there was a reason I was glad to be the oldest]

 And yeah, I’d been to my classmates’ birthdays for which I brought gifts, but birthday presents were for other kids, not us, and it seemed perfectly normal to me that we didn’t do birthdays. Consequently, I have a tendency to let birthdays slip by unremarked, which is not good, because people think you don’t care.   [Carolyn: We know you care Rebecca.]

When Caitlyn was growing up, we followed the custom and threw annual birthday parties for her with her friends- nothing elaborate, but still my mother used to look askance and remark, “In MY day, we didn’t….”. It was hilarious to think what my mother would have made of the fancier children’s parties with hired clowns and bouncy castles. 

Last year, during my birthday week in mid-March, stores, theaters, and coffee shops were shutting their doors and people were not allowed to gather. In that regard, almost a year later, nothing has changed. [Carolyn: Sigh.]  Last Wednesday was Iris’ first birthday, and I saw pictures of her digging into a cupcake, wearing frosting on her nose and cheeks…, for my birthday, maybe I’ll re-create that picture- smeared frosting and all!   [Carolyn & Samantha:  We would love to see that.]

Here is what grand-daughter and grandmother looked like on their birthdays….