From the President’s Desk
We all as members are getting prepared to celebrate our annual White Cane Week activities from February 4th through 10th, which is an opportunity for us to show off and demonstrate our abilities. It is also a chance to educate others how, with minor adjustments here and there, we can do almost anything and live our lives proudly.
Of course, this includes daily tasks, organizing events, travelling freely, advocating for change, while educating others on how we can use technology to position us to live a normal life, with limited sight but a tremendous amount of vision.
Although a few challenges still remain in place for our chapters and members to participate in educational events, such as setting up booths in malls and hospitals, we do find other alternatives to educate the public.
While we spend time with our peers engaging in whatever way we celebrate our White Cane Week activities, we ask that all chapters and members ensure they provide feedback so we can promote our activities through social media and our Visions Newsletter. These events are very important and should be shared with our peers from coast to coast.
February is also AMD awareness month, so we will continue our events into late February. Cupid also arrives February 14th, allowing us to spend time with loved ones in celebration of Valentine’s Day!
On behalf of the National Boared, staff, sponsors, donors and volunteers, we wish everyone the best in celebration of White Cane activities, and we know you will make us proud! Please also remember to get your eyes checked as self awareness is vital to our own lives as well.
Happy White Cane Week!
Jim Tokos
National President
ANNOUNCEMENTS
Member Spotlight: We would like to introduce Dawn Elias, from Fredericton, New Brunswick.
I was born in Hull Yorkshire, England in 1967, completely blind. They started operating on me at two months old, and even after our move to Canada in 1969, the operations continued. I spent most of my childhood in and out of the hospital for sick children-and more in than out, sadly. The reason I start here is because it gave me a unique perspective of the needs of those that are blind.
Throughout my life, I have held to a very strong desire for community. And a very firm belief that a good community can extend and enhance the physical, social, psychological and emotional well-being of a person.
This is the reason why CCB is home for me. Unlike some organizations for blind and visually impaired people, the CCB feels like home, because it is full of like-minded people. It is a community and a welcome and safe place for people like me to come to share to learn to celebrate, and even to fail, and have someone pick us back up again.
It is such a great pleasure for me to serve in any position. At CCB I must confess my favourite position is on the advocacy committee. I have also done some meet and greet in our local grocery stores.
Advocacy isn’t just limited to my time at CCB. I have also done advocacy work inside my city, and for people in my neighbourhood and my province.
Anytime I have an opportunity to lend my voice and my abilities to help further someone’s cause or help them out as someone living with vision loss-I am right there.
It has been my greatest pleasure to work largely in the senior section of the blind and visually impaired community in my province. It seems to be the part of the community that needs the most help right now.
I have benefitted greatly from the help of the GTT team here at the Council. From the one on one training that I have received, and the zoom meetings that I attend on a regular basis to keep my technology training up to par.
I am also an advocate for Braille literacy. To me, every person who is diagnosed with sight loss should be encouraged to learn braille. Even if it is just grade one or uncontracted Braille. Learning Braille is the first step to a fulfilling and independent life as a blind person.
No matter who you are, or where you are, there is always an opportunity to let your light shine even in the darkness of vision loss to encourage, and to inspire to bring hope to bring joy, and to bring a smile!
White Cane Week 2024:
Get ready for a fun and exciting awareness week from February 4 to 10. This year’s events will include countless activities in local communites. Please visit the CCB website to keep yourself updated on the many exciting events that will be taking place this year across the country. And stay tuned for reports on events in upcoming newsletters!
BC-Yukon Division White Cane Week Events:
Once again, the CCB BC-Yukon Division is planning two virtual WCW events via a Zoom Webinar and we encourage you to join us!
Webinar 1 – Sunday February 4th at 1:30pm PST, Hosted by Fraser Hiltz
“Helen Keller’s Connection with the Lions”
Featuring Bob Scales from the Comox Valley Lions
AND
“Knights of the Blind & Grandpa’s White Cane”
Featuring Colette Arvidson from the Knights of the Blind Lions
Webinar 2 – Friday February 9th at 1:30pm PST, Hosted by Fraser Hiltz
“Tips and Tricks for Low Vision and Blind Folks”
Featuring Terry Pipkey, CCB BC-Yukon Division 3rd VP
How to Connect with Us
Please click this link to join us:
https://us02web.zoom.us/j/86529648004?pwd=OCtTMEp1bDJVSytEaTZJMHdDeFo3Zz09
(You will be asked to enter your email and name; and once connected; you will be automatically muted during the presentation)
Or dial in: (when phoning you will need to punch in the webinar ID and password)
Webinar ID: 865 2964 8004
Passcode: 282050
• +1 855 703 8985 Canada Toll-free
Or contact us before the webinar and we can call you to connect you. For more information email
Or call 604-795-3885 or 1-800-874-4666
CCB Chatham Kent chapter WCW Activities:
Below is what our Chapter will be doing for White Cane Week 2024.
Starting with Dennis Cooper doing an interview which will be played on both of our radio stations CFCO and CKSY advertising White Cane Week and our activities.
We will be venturing out to three different stores walking around with the hopes of acknowledgement from the general public and potentially giving some information on the history of the cane.
We will also be at our downtown Chatham Center/mall, setting up an obstacle course and hopefully letting people get the feel of what it’s like to be someone with low vision or completely blind. We will also be advertising our weekly bowling on Fridays at 1 o’clock.
Submitted by Markus McCracken
Women of CCB:
Attention all ladies! Did you know that we have a monthly Zoom group just for you? Join the Women of CCB and be a part of the conversation.
We meet every second Tuesday of the month. Our next meeting will be on Tuesday, February 13th starting at 7 PM EST. During this meeting, we will be discussing White Cane Week and sharing some delicious chocolate recipes.
We have a lot of exciting topics planned for the rest of the year. If you would like to join us, please contact our hosts, Heidi and Leslie, via email
Or
CCB Men’s Group:
The CCB National Men’s Group is an informal discussion held on the 4th Tuesday of each month, focusing on topics particularly relevant to our male members.
For February, we will be discussing Men’s Health. This was a suggestion from one of our members.
To join, please email Shane Cashin at
[email protected] and request to be added to the list.
Looking forward to seeing you all in the room!
Shane & Surander
In Memory: Doug Ayres, Canadian Council of the Blind Club 60 Barrie
We are sorry to advise of the passing of Douglas Ayres. Doug passed away on Monday, January 15, 2024, at the age of 93. We would like to recognize the life and achievements of Doug:
Doug resided in Barrie, Ontario since 1939. Due to gradual vision loss, Doug registered with the Canadian National Institute for the Blind in 1980. He served as Chairman of their Board for 8 years.
Also in 1980, Doug joined the Canadian Council of the Blind Club 60 in Barrie. When Doug joined Club 60, at that time there were only 10 or 12 members.
Around 1993, Doug took it upon himself to restart the bowling group. At that time, there were only one or two lanes of bowlers and through Doug’s encouragement over the years, this group expanded to numerous lanes plus the Barrie Blind Bowlers, who participated in all available tournaments. The Barrie Club 60 members, in addition to pin bowling, participated in curling, cards and lawn bowling, where much enjoyment was derived. Social activities and trips were added as time went on.
In 1994, to help raise funds for the Club, Doug, in his capacity as Club President, obtained a Charity Bingo license. Doug initially volunteered to work at the bingo and did this on his own for many years until many other Club members volunteered to help. Doug’s commitment to raise needed funds for the continued sustainability of a Club he loved, is evident in many ways. Not surprising to know, for the good of Club 60, Doug continued to work designated bingo shifts until his increasing vision loss prevented him from performing the duties of a volunteer.
In addition, he served from 1981 to 2001 in a number of positions on the Board of Directors, Ontario Division. He held the positions of 1st and 2nd Vice President, Director of Finance, Employment Research and Public Relations. Fund raising was an integral part of his activity on the Board. This involved many years of selling pins, clothing, chocolate bars and some visual aid products. He was active in helping with the organization of Conferences in different provinces across Canada.
In addition to Doug’s involvement in Club 60 Barrie, he started CCB Chapters in Orillia Ontario and Collingwood Ontario.
Doug’s awards are not restricted to those associated with Club 60 – he has been recognized for his dedication and involvement in community service throughout his life. Those that are particularly noteworthy are:
– Doug received the Helen Keller Fellowship Award in 2002 partly due to his involvement with Club 60.
– The same year, he was presented with the Queen Elizabeth II Diamond Jubilee Award.
-Doug was instrumental in having the audio signals placed at a busy, prominent intersection in Barrie.
-He was involved as liaison with local service clubs such as the Lions’ Club in Barrie. He participated in community activities such as the men’s 10 pin bowling league which he was active in for over 50 years.
Doug was President of Club 60 for the better part of the 30 plus years he was involved with this Club. He supported and participated in Club 60 activities. Through continuous fund raising from Delta Bingo and Gaming, activity charges are still kept at a minimum for members.
In his own words, Doug was heard to say he could not have accomplished all he had without the help and friendship of the many Club 60 volunteers. He appreciated and was thankful to each and every one of them for their hard work and assistance in making Club 60 the success it is today. It was truly satisfying for him to know that so many visually impaired in the community have and continue to enjoy and benefit from all that Club 60 has to offer them.
Doug was a true ambassador who represented that impairment is not an obstacle when you have a positive attitude and a good support group. Without his tireless efforts, it is possible that Club 60 would not be in existence today.
Advocacy
CCB Representative Attends Canada Transportation Agency (CTA) Round Table:
The following is submitted by Leslie Yee, CCB National Board Member, who recently attended a round table with the Canada Transportation Agency (CTA).
The CTA meeting was very informative and highlighted some upcoming innovative technologies in accessibility in air transportation.
Everyone had a chance to speak and I highlighted some of our concerns as follows:
-Lack of education and awareness on the ground. There are still many complaints from people travelling and that is often because of a lack of understanding, respect and the willingness to treat people with dignity.
We understand that everyone at the CTA round table understands this, but it is not always getting to the front line people.
-More people with disabilities need to be hired and there needs to be more training by people with disabilities as well.
-There are such different experiences when travelling between airports, carriers, etc that it is stressful not knowing what to expect.
There needs to be better regulations in place that are carried throughout the system so that everyone providing the services is providing similar experiences.
-Finally keeping us involved at all levels. For example, Frances said that the Parliamentary committee on transportation is discussing, with other organizations including the CTA, “Accessibility of People with Disabilities”. This is good but we need to be at this discussion, also. Again we need to be included at the beginning of the discussion, not just talked about and asked to join later once they have a plan.
CCB will continue to work with the CTA to advocate on behalf of blind and vision impaired Canadians for accessible travel.
Fight for more Described Video Access:
In the fall of 2022, Mr. Zawilski approached the CCB with his concerns regarding Described Video (DV).
We moved quickly to provide him with letters of support and we have stayed in contact with him through his ongoing advocacy work on this important issue for our community. Now that Mr. Zawilski has a favourable decision to take his case to the CHRC against Cogeco, I will be a witness, as the CCB representative, for Mr. Zawilski when his case is heard. The following is a summary of the case so far, and we will keep you posted on further developments.
-Leo A. Bissonnette, Ph.D.
CCB 1st Vice-President
Jan Zawilski shares his experiences and challenges over the past four years regarding his efforts to get access to described video (DV) for television content offered by Canadian cable TV providers on their on-demand platforms. As a person with a visual disability, he represents the thousands of people in Canada who face this barrier. According to the 2017 Canadian Disability Survey, there were approximately 1.5 million Canadians with a visual disability and this number is growing with the aging process.
DV is an important means of compensation that makes it more accessible for people with visual disabilities to follow what’s happening on TV. It provides verbal narration of visual elements during dialogue pauses. This service is usually activated via a dedicated button on the TV provider’s remote control. Jan deplores its absence on on-demand platforms and believes this constitutes systemic discrimination against people in his situation.
Jan firmly maintains that this systemic discrimination manifests itself on two levels: Cogeco’s customers with a visual disability pay the same rates as other customers but do not have access to DV on the on-demand platform, and he points out the disparity with deaf or hard-of-hearing people who have benefited from captioning for at least 15 years on all TV content (linear stream and on-demand).
To fully appreciate the impact of this systemic discrimination, we need only draw a comparison with a library. It’s as if a library were to allow one category of users access only to the latest releases and not allow them to consult its entire collection of books and other printed matter – the vast majority of its printed content. This is totally absurd!
He also highlights the financial realities of people living with a disability, pointing out that they generally have lower incomes than people without disabilities, and that paying for largely inaccessible TV services exacerbates their often precarious financial situation.
Jan’s efforts began when he noticed the complete absence of DV on Cogeco’s on-demand platform in February 2020. Despite his requests, he received no explanation from the TV provider. This led him to file a complaint against Cogeco with the CRTC in October 2020.
The CRTC’s disappointing response in March 2021 did not address the alleged systemic discrimination, deferring the potential resolution until Cogeco’s license renewal in August 2023. Indeed, the CRTC did not acknowledge that its regulatory policy 2017-138, which does not require cable TV providers to offer DV on its on-demand platforms, is at the root of the alleged discrimination. This is all the more disappointing considering that this organization was given new responsibilities towards the rights of people with disabilities with the coming into force of the Canadian Accessibility Act. At this stage, Jan was unable to speak with a CRTC representative, nor get answers to the important questions he had raised.
Faced with this situation, Jan filed complaints against Cogeco and the CRTC with the Canadian Human Rights Commission (CHRC) in May 2021. Jan and Cogeco agreed to participate in mediation proposed by the CHRC, but Jan ended the process because he was not satisfied with the results.
Although the CHRC officer initially recommended that the complaint against the CRTC be dismissed, in April 2022 the CHRC decided to re-examine the complaint because of the importance of the allegations of systemic discrimination and the need to analyze case law in this area.
Jan tried everything to get the CRTC to address his allegation of systemic discrimination. The CRTC refused the CHRC’s offer of mediation, as well as Jan’s offer to settle out of court. The CRTC limited itself to arguing that the CHRC had no jurisdiction over its regulatory policies and decisions.
The CRTC’s Decision 2023-287 in August 2023 renewed Cogeco’s license until August 2028 without requiring DV on its on-demand platform. Although a future proceeding is planned to review the regulatory framework for DV, no firm commitment to require DV for on-demand platforms has been made, and no timetable has been provided. As a result, the systemic discrimination will probably persist for several more years.
In the end, the CHRC dismissed the complaint against the CRTC in November 2023, declaring it legally “frivolous”, a decision that deeply disappointed Jan. Under the Canadian Human Rights Act, the CRTC is not considered a service organization and therefore cannot be prosecuted for discrimination. Jan points to the apparent unfairness of the federal legal system, which seems to allow federal regulators such as the CRTC to circumvent the fundamental rights recognized by the Canadian Charter of Rights and Freedoms (CCRF).
Nevertheless, Jan remains determined to pursue his efforts to challenge this legal loophole, and to obtain the necessary legal support to do so. He also hopes to raise awareness of the issue, noting that the issue goes beyond his personal cause, affecting all people with disabilities and potentially all groups of citizens covered by article 15 of the CCRF who may be confronted with federal regulatory agencies presenting discriminatory policies, regulations or practices.
Jan did, however, get some very good news when he learned, at the end of November 2023, that the CHRC had referred his complaint against Cogeco to the Canadian Human Rights Tribunal (CHRT), as it had found it to be justified. As a result, he will finally have the opportunity to obtain a favorable judgment recognizing the existence of the systemic discrimination he has alleged for the past four years, as well as remedial measures.
Finally, on January 10, 2024, the CHRC informed the CHRT and the parties involved in Jan’s complaint against Cogeco that it will participate in the CHRT’s process related to this complaint. The CHRC believes that this complaint is of public interest and could clarify human rights issues. This is excellent news for Jan and the hundreds of thousands of people in his situation in Canada.
The following organizations formally support Jan’s efforts:
- Canadian Council of the Blind;
- Regroupement des aveugles et amblyopes du Québec;
- Alliance québécoise des regroupements pour l’intégration des personnes handicapées;
- Confédération des organismes de personnes handicapées du Québec;
- Canadian National Institute for the Blind;
- Council of Canadians with Disabilities;
- Fighting Blindness Canada;
- Ligues des droits et libertés.
Assistive Technology
Meet Estée Lauder’s Voice-enabled Makeup Assistant, an AI-powered tool for people who are blind or visually impaired:
This innovative and free app offers audio feedback on the user’s foundation, eyeshadow and lipstick application, creating a more accessible beauty experience for people who are blind or visually impaired.
How It Works: The AI-powered Voice-enabled Makeup Assistant leverages machine learning and voice instruction technologies to learn your preferences and provide audio feedback when you ask. After you apply your foundation, eyeshadow or lipstick, the app will access your phone’s front camera to scan your face. Using artificial intelligence, it identifies the makeup applied to your face, eyes and lips and assesses the uniformity and boundaries of application and coverage. If there are suggested areas to touch up, the virtual assistant identifies them and makes audible recommendations so you can adjust your look. After your touch up, the app scans your face again and provides feedback on the accuracy of application.
In the News
World Braille Day-Girl from Ireland ‘able to read like classmates’:
Eryn Kirkpatrick said that braille gives her the independence to read on her own.
This year marks the 200th anniversary of the invention of Braille, but to people like Eryn Kirkpatrick, it is much more than just dots on a page.
For the 12-year-old from County Tyrone, Ireland, the system is the key to her independence.
Eryn, who began learning Braille aged just five, says it allows her to learn just like her peers.
For all of this, she has a 15-year-old French boy called Louis Braille to thank.
“I love reading and writing with Braille,” said Eryn. “I also love learning about all the new technology that is out there now but still enjoy reading story books in Braille sometimes.
“It’s important to me that I’m able to read the same books and do my schoolwork as well as everyone else my age – Braille helps me to do that.”
Despite there being alternatives such as audio books, Eryn says she still prefers to use Braille.
“It gives me the independence; it tells me the story through words instead of through somebody else reading it to me.”
January 4 marks the anniversary of the birth of the inventor of Braille, Louis Braille. The French man became blind aged four. In 1824, aged 15, he developed Braille. The system is based on variations of six dots, arranged in two columns of three. Variations of the six dots represent the letters of the alphabet, punctuation, numbers and groups of letters.
Eryn’s mum, Evanna, said that since her daughter’s birth she has “learnt to trust that she’ll find her own way in life”.
“As parents, when Eryn was very young, we were worried about the future and how she would manage at school or growing up but she continues to amaze us with the way she approaches every problem that’s thrown at her,” she said.
“We knew that she was blind but we didn’t really know what that would mean for her growing up. Would she be able to read and do all those things that children do?”
She added: “I’d say to other parents: have faith in our kids. It was important to us as parents that, from a young age, Eryn got every opportunity to learn skills that would help her progress in life.”
Evanna has since learned to read Braille by sight but not touch.
“Braille just means Eryn can live as normal a life as you or I or anybody else,” she said.
Jackie Brown, from RNIB, who visits Eryn at school, said Braille remained crucial to people with visual impairments.
“Close your eyes and think of all the ways you use the written word in your daily life,” she said.
“Those scenarios are just the same for a person who can’t see – that’s why Braille is still so important.
“Don’t get me wrong – advances in computer technology and screen reading or magnification software can be life changing, but if you’ve restricted access to computers or need to read independent from other technology, Braille is still the go-to.”
For Ms Brown, her love of the system started as a child. “Being totally blind, I learned Braille as my first medium to read and write. I did all my schoolwork in Braille and even now, I still use Braille each and every day.
“Growing up, I was acutely aware of how much Braille enabled me to do. I think it’s still so important in order to teach kids with a vision impairment numeracy and literacy.
“It’s my job to make sure that young people with a vision impairment know about the developments in technology that exist to support them in their education journey so they can grow up strong, confident, people who choose their own path in life, go to university, flourish in their chosen careers, or whatever it is they wish to do.”
Groundbreaking gene therapy gives the gift of sight to Quebec child:
Two retinologist surgeons at the Maisonneuve-Rosemont Hospital ophthalmology clinic in Montreal have performed groundbreaking gene therapy on an 11-year-old boy.
The procedure was to reverse a degenerative, genetic eye disease that could have caused him to go blind. It’s the first operation of its kind in Quebec, and the first publicly funded one in Canada.
The surgeons performed the surgery on William Khayrallah’s eyes two weeks apart. The doctors surgically administered Luxturna, a gene therapy drug developed in the United States.
“To convert an untreatable disease into a treatable disease, for a physician in their lifetime in their career, it’s very rare,” said Dr. Flavio Rezende, an ophthalmologist and retinologist surgeon.
“It’s a very special opportunity we have to impact medicine into the future, and the future is the present. It’s very rewarding.”
William was first diagnosed with Leber’s congenital amaurosis as a baby. It’s a severe form of inherited retinitis pigmentosa caused by a mutation in the RPE65 gene.
“I think for the child and the family when they first find out, it’s a very devastating diagnosis because in the past it was untreatable,” said Dr. Cynthia Qian, one of Khayrallah’s surgeons. “It leads to difficulties in vision in the dark at first, but over time this can continue to decrease to affect daytime vision. Children can continue losing vision into adulthood and it can become very severe. In severe cases, it can become full darkness.”
William says he couldn’t see at night, and also struggled during the day, especially with sports like badminton, tennis and soccer, where seeing a ball was difficult.
“It was annoying. I had to have someone walk me around almost like I’m blind,” William said.
It was difficult for his parents to witness.
Last fall, the Quebec government approved the gene therapy treatment for use in patients. The surgery is complex and in Quebec is currently only performed at Maisonneuve Rosemont’s ophthalmology centre, one of North America’s leading centres for eye issues.
“The treatment we are doing today is gene therapy to reverse the effects of this type of retinitis pigmentosa,” said Dr. Qian.
“This is the first in the province of Quebec. It’s also the first gene therapy approved to completely reverse the disease at source. What we are able to do is to inject and surgically impact the gene in the patients affected in order to correct the genetic error and to re-establish the normal function of vision, and not only stabilize the vision but also keep it at a long-term permanent level.”
William says it took about a week for his eye to feel better after his first surgery, but says his vision is remarkably improved since.
“It’s a big improvement from before and it’s life-changing for me,” William said. “I played soccer with my dad at 8:30 at night and I was in goal and I managed to block the ball. This will be something I remember forever. It will be the thing I will never forget.”
“Our son will actually have a different life, basically,” said William’s mom Joy Solomon. “Finally now he can really see. We are very happy and very thankful.”
William’s father can’t wait to take him camping this summer. Last year, he couldn’t see the night sky.
“He could not see any stars. This summer I am taking him again and he can see the beautiful sky we have – a sky full of stars,” he said.
By Amanda Jelowicki, Global News
www.ccbnational.net 1-877-304-0968