To celebrate Canada’s 150th Birthday CDBA National would like to invite Canadians to share a memory, story, thought, picture or a dream for the future that relates to CDBA, deafblindness or intervention. Our hope is that 150 (or more) people will take a few minutes to inspire others with their past experiences or hopes for the future.
Happy 150th Birthday Canada! Here are our submissions so far…
I had the pleasure of working as an Intervenor with the Canadian Deafblind Association in Saskatoon. As Canada looks back at celebrating 150 years, I think back to the many Canada Day’s I spent as an Intervenor. The Individuals were always so excited to partake in the festivities at Diefenbaker Park. We would get a spot close to the music stage, and everyone would enjoy the music/vibrations while we waited for the fireworks.
The best part of the day was seeing the Canadian Pride on the individuals’ faces. Every year, we always made friends with whomever we sat beside; the community is truly an inclusive one. It makes me truly proud to be a Canadian, and even prouder to be a member of the Canadian Deafblind Association.
Although I have many memorable CDBA moments one of my fondest is from 2003. CDBA National, our Chapters and our Community Partners hosted the 13th Deafblind International Conference.
During the opening ceremonies we paid tribute to each of the 48 countries in attendance by having a parade of the country flags. Each flag from a visiting country was carried into the room by a Canadian intervenor. The Canadian flag entered the room last and was carried by a Royal Canadian Mounted Police officer. It was truly inspiring to have so many people from so many different countries on Canadian soil to share and to learn. A proud CDBA Canadian memory!
My story of CDBA NB starts back in 1988 with a camp for 14 clients and 14 intervenors. At that time there were no family members present to witness what excitement can be had when they accomplish something for the first time, and they sure did just that. Well that has changed, and then some, to where now our chapter is providing a camp experience along with other programs for up to 45 consumers and their families. It is providing a proven service to its consumers and their support network.
A very dedicated Board of Directors that has grown to include family members, educators, businessmen and women and former intervenors. I have seen a parent become the current chapter president, a man who not only is on our NB Chapter Board but also the National Board and a parent who sits on both Boards. How awesome is the dedication from all our members to providing the best world of information to our consumers! A unique and Happy Canada 150 – to all.
Twenty years ago, our daughter, Alynne, was born with a rare genetic syndrome. She is a gentle, petite, and sociable young person. Her challenges include global developmental delay as well as a significant vision and hearing impairment. This dual sensory deficit posed huge barriers to both expressive and receptive communication, but eventually led us to meet the experts in deafblindness in Vancouver. Through their thoughtful and consistent teaching of the ‘Total Communication’ system throughout Alynne’s school years, we as a family were able to learn what deafblind Intervention can do to open doors to the world for our daughter.
Now, as we live and work with her each day, ‘Doing With, Not For’, always looking for motivators, helping her anticipate or choose what is about to happen next, she rises to our challenges – each time – as if she had been waiting for us to figure out how to give her the right tools to say or do yet one more thing. Inspiring!
CDBA for me was the beginning of my journey of working with people with challenges. I was given the opportunity at the age of 16 to work with an individual who was blind, cognitively delayed and nonverbal. CDBA NB, even though I was inexperienced and young, trusted that I would be able to work with this person despite some of the very real challenges that were said to exist. Throughout our time together, I developed an understanding that how you treat a person will reflect on how they treat you (even with a disability such as his). We developed a friendship and understanding of each other that lasted through several years. With only a look (mostly because this person was nonverbal), I usually was able to know what he was thinking and I truly believe that the same was true for him.
This person that was described as violent and difficult ended up being a very caring and funny individual. My family began to see him as part of our family and, when I graduated from high school, he was invited to attend our family party. I have many wonderful (and some funny) memories with this person.
This first employment was the beginning of approximately ten years working for CDBA part-time (and full-time in the summer) with a variety of people with different needs. I learned and grew as a person with each consumer I had the opportunity to work with. Some of these skills learned, I still use every day with my current job as a learning specialist. I will always have a special place for CDBA in my heart and it is the reason why I am now a board member of the NB chapter.
I was born deaf and became blind in my left eye when I was 8 years old. Later I started to get tunnel vision in my right eye due to Retinitis Pigmentosa, eventually losing almost all my vision in that eye. I have a Deaf-blind brother Pier Morten and two hearing sons. I was in the Paralympics in 1980 for wrestling and the 5-km walk – where I won a bronze medal, then in the 1984 Paralympics I competed in wrestling, winning gold in the 68-kg category, and in 1988 I won a bronze medal for judo. I have been an advocate for Deaf-Blind people for more than 20 years. I am a founding member of the BC Association of the Deaf-Blind (now Deaf-Blind Club). One area I advocated for myself and other Deaf-Blind people was to be able to travel independently, by any kind of transportation. (Air Canada Human Rights Case) More recently, I was a Director-at-Large and the Deaf-Blind Liaison on the Board of the Greater Vancouver Association of the Deaf, as well as Chair of the Deaf-Blind Planning Committee for four years – 2012-2016.
In 2013, I participated in the Rick Hansen School Program Ambassador training, where I met Rick Hansen again. We had met before as athletes a long time ago, and were on the 1980 Paralympic team together. I did a few presentations with another RHSP Ambassador who is Deaf. I have been a guide dog handler since 1999, having had three dogs over the years – Harmony, Hope, and now Kore. Using a guide dog helps me with my mobility and being independent. Yet it has been a challenge at times, when training a new guide dog if it becomes lost, I am literally stuck in a strange place with no one to help get my dog and me back on the right path. Having an intervenor would help in this situation.
I have been working at the Quest Food Exchange Market as Coordinator for their Accessibility Project for 5 years. I also worked as the Volunteer Intervenor Program Coordinator with the Deaf-Blind Services Society of BC for 5 years. In June 2013, I received the Joyce Thompson Award from the Rotary Cheshire Homes/Canadian Helen Keller Centre. I also received the WIDHH Merit Award for Distinguished Service to the Deaf and Hard of Hearing community in 2009. It is a humbling experience to receive these awards, when I know that other people who are Deaf-Blind are still struggling for their own independence.
Initially I became involved with the CDBRA, as it was called then, in 1998. Volunteers from National were instrumental in providing some training for me as I embarked on a new journey in my career where I was fortunate enough to work with several individuals who were deafblind. I have learned so much over the years from these individuals who are truly amazing
I have many wonderful memories of being part of CDBA including the DBI World Conference held in Canada in 2003, several provincial conferences and as a provincial and National Board member. The Canadian concept of Intervention, of “doing with not for” and using a total communication approach changed the way I saw the world, how we provided supports in my work and the amazing impact on the lives of people who are deafblind.
I am proud to be a member of CDBA and the advocacy work the organization provides in the field of deafblindness.
When I first heard about an open position at CDBA-SK, I wasn’t sure what I would be able to offer the agency or the Individuals. I had only worked with one Individual who was deafblind before and that was only a handful of times throughout my career. I decided to give it a try despite knowing that there might be some challenges. What I learned from working for these amazing Individuals, was that patience, persistence and genuine concern for others will always pay off in the end. It was remarkable to see their ability to communicate using so many things other than words.
The things I have learned from the Individuals has definitely played a role in my life outside of work too. The Individuals have become contributing members of society, positive role models for others, and additions to many families because of the services provided by CDBA-SK. They have so much to look forward to because of this great organization and the people who support them.
I cannot imagine my life without the people I work with as they have helped shape me into the person I have become over the last 10 years working for CDBA.
When I first began in 1995 with the Canadian Deafblind Association-NB Inc. (CDBA-NB), it was a whole new world for me having come from working in the government. However, it didn’t take me long to fall in love with my job and our amazing clients. If I’m having an especially difficult day and a client arrives at the office…my day is immediately brightened. This year is CDBA-NB’s 35th Anniversary. Over the year’s clients have come and gone, Intervenors have come and gone, staff has changed, but the one thing that has not changed is the dedication CDBA-NB puts in every day to make the lives of our clients better. Thanks to the wonderful Intervenors that enter the lives of our clients to help fulfill their programs (which might include taking them to work, appointments, events, shopping, learning life skills, etc.) they are able to be part of their community.
Over the years, CDBA-NB has further enhanced their clients’ programs and experiences by providing a sensory camp in the Fall; day trips to visit places and do things they might not otherwise be able to do (ie. Whale watching, seeing the Globetrotters, going to the zoo; driving go-karts, visiting sensory gardens, an aquarium, museums and so much more); taken them to concerts; sporting events; developed a Snoezelen room for them to enjoy, and so much more. Without the hard work and dedication that everyone (the clients and their families, the Intervenors, office staff, volunteers and the Board of Directors) puts in, CDBA-NB would not be where it is today.
I look forward to what the future will bring and what new and exciting things will happen.
Canada’s 150th Birthday
Giving back to the community in the spirit of Canada 150
Happy Canada Day from Troy DeBaie- Nova Scotia member of the CDBA.
I am the mother of a beautiful young adult, Beth, who was diagnosed Congenital Deafblind Rubella Syndrome. Throughout her life, Beth has been the recipient of direct and indirect services provided by CDBA-NB. A prime example of CDBA-NB providing direct support is the stimulating annual camp they host. The staff’s creative thinking and unconventional twists allow for full inclusion of all campers. Their ability to conceptualize problems differently allows them to be proactive and elude potential barriers. This perspective benefits all campers by allowing full participation, along with promoting a harmonious atmosphere, leading to a pleasurable camping experience.
Their hands of service also extend through those we call Intervenors, trained individuals who provide one-on-one service to those afflicted with deafblindness. CDBA-NB works closely with all their Intervenors, collaboratively developing individual programs for presentation to government representatives in support of adequate funding for the provision of their services. CDBA-NB also advocates tirelessly to provincial service clubs and associations for supplemental funding to ensure they meet the needs of all deafblind recipients. As a result of Intervention Beth has excelled academically, behaviorally and socially.
In our small coastal community, Beth and her Intervenor broke the barriers of prejudice and fear while earning themselves an abundance of respect. Together, they attended Sparks (a group for young girls of kindergarten age), Messengers (age 6-9) and explorers (age 10-12) for the full duration. During the last years in Explorers, there were three girls Beth’s age whom she interacted with on a more regular basis, and they would save her a seat each week. At this point, her Intervenor was able to distance herself, but remain close enough to intervene if necessary. She was able to do this because of the great job she did integrating Beth and educating the girls. Speaking of education, one evening the Explorers Group was doing a Word Search and they were trying to help Beth by pointing out the word “Braed”. Beth wouldn’t circle the word; ignoring their effort she continued doing her word search. Eventually, the girls realized Beth had already circled the real word “bread”, so they put their erasers to work and copied Beth’s sheet. How true that we all learn from each other. By the way, Beth happens to be a Word Search “Pro”. Beth graduated from Explorers in May of 1999. Throughout these years, Beth’s Intervenor taught the girls about Beth’s Hearing Aids and how to communicate using Sign Language; a language that she studied when she first started working with Beth. The young girls were taught the Motto, Group Verse, and various songs in sign language, but it didn’t stop there. Her intervenor was a Sunday School Teacher at a different church than Beth attends. She took it upon herself to set a few minutes aside each week to teach the young children various words and songs through signing. Each Spring, at the Sunday School Closing, the children would sing and sign the songs to the church congregation. The support of CDBA-NB has silently, yet successfully, filtered through our society.
Thanks to CDBA-NB and Beth’s Intervenor, Beth developed a great sense of independence, and the pride she felt when making decisions independently was evident by her demeanor. Her Intervenor would avoid providing choices that would consequently lead to disappointment. I believe her Intervenor saw Beth’s potential over her limitations and because of that, they have met with many successes.
With the support and blessing of CDBA-NB, Beth’s Intervenor devoted time and effort towards enhancing Beth’s quality of life. She took Beth to dance class twice a week faithfully for several years, and in the second year, they had perfect attendance. She had also acquired Beth’s tap and jazz shoes, dance suit, and pounded the pavement fundraising for the year-end Dance Extravaganza. At only an arms’ length away, she tapped every tap, kicked every kick and turned every turn with Beth. Her determination to have Beth give it her all became so obviously self-gratifying to Beth that it didn’t go unnoticed by others. As we sat among the crowd of 400 at the year-end performance, we swelled with pride at her achievement and cried with joy at her obvious sense of accomplishment, worth and belonging. The comments my husband and I received after the show were numerous and gratifying. Things such as “I had no idea she could do that”, and “I didn’t notice Beth and her Intervenor in that group until the song was half over,” and “Beth did great, she really appeared to be enjoying herself and she didn’t seem as nervous as some of the other girls.” To top it all off, after the show the girls in her group began hugging each other and telling each other what a great job they did. One of the girls came towards Beth, although she looked a little apprehensive, she gave Beth a great big hug. Then she asked her Intervenor how to sign “good dancing,” this broke the ice for the other girls and one by one they followed suit. This time it was Lisa’s (Intervenor) turn to have tears in her eye while saying. “This made it all worthwhile.”
In reflection of the above testimony of the true value of CDBA-NB for their support and services, I feel a strong sense of gratification towards their staff and the fulfillment of their mission, “The Canadian Deafblind Association-NB Inc. is committed to assisting all persons who are deafblind to achieve, with Intervention, the best quality of life.” They have allowed Beth to achieve, with Intervention, the best quality of life.” Thank you CDBA-NB.
I took my son Jonathan, who is deafblind skiing in March with the Vancouver Island Adaptive Skiing Program. He did sooo well! Skiing is something I have done my whole life … skiing most of Western Canada … a very Canadian thing!!
When our daughter was born in Toronto in 1975 we had no idea she had any problems. But within a few days she was transferred to the Hospital for Sick Children where she was tested from head to toe. Eventually the diagnosis was rubella. This was later changed to CHARGE syndrome, a condition which was not in the medical books at the time of our daughter’s birth.
When she was discharged 3 weeks later we were given a prescription for her heart medicine. The bill was $1.65, and I still have that receipt. After all the testing and weeks of hospitalization we paid less than $2. We are forever grateful to Tommy Douglas and the Canadian health care system. Our daughter was well taken care of and we were spared bankruptcy.
I am fortunate that at a young age I discovered my calling to world of deafblindness. I am grateful for the role CDBA-BC has played in making my dream of becoming an intervenor a reality, by providing opportunities to work in the summer with individuals who are deafblind. The following is an adapted excerpt from an essay I wrote in 2015 expressing my love for deafblindness.
“Mountains. Tall and scraggly. Wide and snow dusted. Covered in sheer rock faces and vast forests. Breath taking and beautiful. I love mountains. I’m a BC girl so I feel at home wherever they exist. I’ve been hiking since I was young and have even hiked trails in Peru and Spain.
I fell in love with the mountains of deafblindness before I even had any formal training. I had experienced the beauty and the challenge, and was nothing less than called to them. I started with a simple curiosity and it has grown into one of my greatest passions.
Those who are deafblind are in many ways like mountains, each uniquely beautiful, easily judged by their appearance, maybe a bit intimidating and no two are alike. Like mountains, people who are deafblind experience change and may look different from one season to the next; some seasons are more challenging, but there are always things to learn. With mountains there is always another ridge to climb or valley to explore; people who are deafblind have incredible depth of character just like every other human.
The beautiful difference between mountains and individuals who are deafblind is that mountains can’t move or explore the world. But people who are deafblind can. As an intervenor I have the privilege to bridge the world of an individual who is deafblind to the world and people around them. Anything we experience, they can too and for that I am grateful that they are not mountains.
The secret of hiking is that you hike for the sake of hiking the mountain, not for reaching the top. I hope to climb mountains for the rest of my life, both physically and in the world of deafblindness. So in the words of John Muir, “The mountains are calling and I must go.”
Members of the CDBA New Brunswick Chapter visit the Canada 150 sign in Fredericton New Brunswick.
In 2015, Richard asked CDBA-NB, if they could make this trip possible for him. CDBA-NB was pleased to be able to help make his wish come true and a world of possibilities opened up.
Richard caught the train in Moncton and went to Truro, NS for the night, stayed at the Holiday Inn and then headed back home by train the next day. Richard loved the train and the taxi rides. Lot of smiles and praises of thank you for the opportunity. Richard didn’t like the hotel, however, thought it smelled too much like a hospital. Richard got to try different restaurants and he informed me that some were good but he likes “Queens Buffett” better. Richard also got to go to Value Village in Moncton. He thought it was so cool that Moncton had one too as he usually goes to the one in Saint John.
As his Intervenor, I was so pleased to be part of this experience with Richard.
Sheena has been a fan of the Backstreet Boys for 15 years. As soon as I heard the Backstreet Boys were going to be performing I knew I had to try to get Sheena there. With the help of CDBA-NB and Sheena’s family, I was able to purchase tickets for the two of us. I wanted to make it even more special, so I thought I would do a scavenger hunt. Each day she would receive clues that would lead to the next clue. Every day for almost two weeks, she received multiple clues on where to find her next clue. Also in her clues, I put in song titles/album titles from their CD to see if she would pick up on it. Towards the end she did but still had no idea how that was related to her scavenger hunt.
On April 2, she got clues that lead her to the CDBA-NB office. Once she was there she received her last clue and found her surprise: BACKSTREET BOYS TICKETS. She was beyond excited and even shed a few happy tears. During that moment alone you could see how truly excited and honored she was to go—-a dream come true. She never thought in a million years she would get to go see her all time favourite band. This was a whole new experience for Sheena and I was so glad to be a part of it. We started the concert day with a nice dinner at Boston Pizza, thanks to Kevin’s wife, Kim. We stood in line and patiently waited to get in. Once inside Sheena couldn’t wait for it to start. When the opening band started she really started to get excited. Once the Backstreet Boys came out her face lit up and she was smiling ear to ear. She stood up, danced and sang to every single song, and they played for about 2 hours, and she didn’t stop all night. It was an amazing experience for both of us. When I asked her how she would describe her concert experience, she said it was AMAZING and so much fun. She was so happy she finally got to see “her boys”. She said she loved doing the scavenger hunt too.
I am an intervenor and wanted to share how happy Ellyn (the student I work with) was trying her stander for the first time.
I cannot walk by a Canadian flag or hear the Canadian anthem without thinking about the first student with deafblindness that I worked with. I started working with Jeff when he was entering grade eight and spent the next 6 years developing an exciting relationship. There was never a dull day with Jeff. Our shared love of the Canadian game of hockey made the bonding easy.
Jeff had season tickets to the Kelowna Rockets and it was important to him to get there for the opening anthem. If you were running behind Jeff would be pointing at his watch, “time, time, time”. No one stood prouder for those anthems with his ball cap at his chest and signing the Canadian anthem. His enthusiasm spread to those sitting near.
His watch was an important part of Jeff’s day. He knew when all the NHL games were on TV and would be telling me who won or lost. He had his own signs invented for each team. In the morning he would show me how a body check was delivered by throwing his own body into the school lockers or share just how close his team came to scoring but the goalie stopped it.
One particular day at school he must have missed the anthem the night before because he dragged me outside (because I was not understanding his message via sign) to the Canadian flag and we stood outside in the cold signing the anthem while other students passed by. We would also stand and sign for the Canadian anthem in grocery isles if he happened to see a maple leaf on a bottle of maple syrup.
When the Canadian anthem is played I stand and sign remembering my days with Jeff and the enthusiasm he threw at each day. It makes me smile.
Most memorable moments:
Wow I could go on and on, so many wonderful people, memories and experiences all because of CDBA!!
Thank you for being a part of my life for so many years!
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