From the President’s Desk
WOW! What a wonderful month October has been for the Council. I would like to thank everyone for their contributions for making our World Sight Day event such a wonderful success.
The Hon. Judy Sgro M.P. brought together so many strategic partners and friends of the vision community to showcase the importance and relevance of a National eye care strategy in Canada. The importance of such a strategy and the coming together of all of the players who contributed their support to this cause resulted in the passage of Bill C 284 through the Legislature and now it has been put into the hands of the Senate, and so close to becoming the law of the land.
We are truly indebted as members of the Council, its many partners, and the technical staff for the outstanding efforts demonstrated by their contributions to Our World Sight Day event.
I have received many letters and calls from across Canada from our constituents who shared their thoughts and congratulations on the event, sharing that CCB and its supporting partners have definitely changed the landscape of the future of vision research and supporting efforts to continue the end of preventable vision loss in Canada.
To that end, it goes without saying our great team headed up by Michael and Keith are to be congratulated for their tireless efforts and research that have brought us to this monumental time, and their efforts to continue the journey to end preventable blindness in Canada.
Our White Cane publication in early October magnified that it takes a huge effort of players (sponsors, partners, and the community) and we thank everyone for their support in allowing us to continue our important work.
On behalf of the Board, staff, partners, and membership, thank you Judy Sgro, you have certainly made us proud!
Jim Tokos
CCB National President
Announcements
Congratulations!
The CCB Windsor/Essex Low Vision Social and Support Chapter is pleased to recognize Christine Copeland, who was presented with an award for her twenty-two years of service at the October Chapter meeting. Christine is one of three women who organized the chapter when it was first formed.
“I was fortunate to have the opportunity to attend the chapter meeting and personally extend my congratulations to Christine”, said Jim Tokos, CCB National President. “CCB and the blind community are lucky to have her as such a strong supporter.”
“Christine has always been willing to serve on various committees within the chapter, such as the membership committee”, said Ken Christie, Chapter member. “She is a diligent worker, and has been a wonderful mentor in the group–always willing to take the time to provide guidance and support to new members and even our new Presidents.”
Congratulations Christine!
Congratulations on 30 Years!
Congratulations goes to the CCB Kamloops Chapter on achieving 30 years as a CCB Chapter! Founded March 19, 1993 under the name “Kamloops Insight Club” the Kamloops Chapter has been an active and vibrant chapter throughout the years and we wish them all the best!
Early Bird Draw Winners Announced!
CCB National is pleased to announce that the two winners of the 2024 Early Bird Draw are CCB Miramichi Chapter, NB and CCB Summerside Socialites Chapter, PEI. Congratulations!
Each of these chapters paid their chapter dues before the October 27 deadline and will be receiving back 100% of their dues back to help support their chapter activities.
All other chapters who have paid thus far, as well as those who pay by the “Rebate” deadline of Friday, December 8, 2023 are still eligible for the Rebates of 50% of membership paid plus $1.00 per unduplicated email.
Please encourage your members who are paying individually via credit card, e-transfer or via the CCB website to do so before this deadline so that their payment can be credited to your chapter.
In any case, ALL 2024 membership dues are due by December 31, 2023.
CCB Men’s Group
Join us on Tuesday, November 28th, 2023, for our Monthly CCB National Men’s Zoom Group Meeting.
The CCB National Men’s Group is an informative and sometimes lighthearted place for men of the CCB to get together to learn from each other in a positive and respectful environment. We will discuss a particular topic of interest to men who are blind or visually impaired and these topics have included such topics as travel, service animals, employment, health, tax credits and savings plans. We also have fun as we learn and build fellowship among the guys.
We are always looking for interesting topics to discuss, so if there is a topic you feel that we should consider for an upcoming discussion about, please feel free to reach out to Shane and Surander and share your ideas with them.
To join, please email Shane Cashin at
[email protected] and request to be added to the list.
We will inform the members on our mailing list about this month’s topic before the meeting when we send out the Zoom link.
Please note that if you have received an invite to previous Men’s Group meetings, you are already on the list and should receive an email on or before the day before the scheduled meeting.
Looking forward to seeing you all in the room and a great year ahead!
Shane & Surander
The State of Vision Health in Canada – A Canadian Council of the Blind Conference
The CONFERENCE on October 17th WAS AN OVERWHELMING SUCCESS!
DID YOU MISS IT? DO YOU WANT TO VIEW IT AGAIN? SEND IT TO COLLEAGUES?
Please visit the following link to listen to the conference:
This conference provided a comprehensive update on the current state of vision health in Canada and offered insights into what we can anticipate as we move forward through the post-pandemic era.
The Presenters Were Outstanding!
We were honoured to have the Honourable Judy Sgro, PC, MP, join us to provide an update on the progress of Bill C-284 – An Act to establish a national strategy for eye care, which was first tabled in the House of Commons in June 2022.
UPDATE Bill C-284
The motion on bill C-284, to establish a national eye care strategy carried unanimously on October 25, and now moves on to the Senate.
The dynamo MP from Humber River-Black Creek has demonstrated an unwavering commitment to getting her private members bill passed. The vision health community owes her a huge debt of gratitude. Again, thank you Judy!
If you missed MP Judy Sgro’s speech in Parliament you may download the video of her speaking in the House by following this link:
https://drive.google.com/file/d/1KgBPCUCRrXF7c7zYDhXUoL6smjkuKk3z/view?usp=share_link.
Specsavers and the Canadian Council of the Blind mark World Sight Day with national survey unveiling insights and behaviours that put vision at risk:
October 12, 2023 was World Sight Day, an internationally recognized date to promote eye health
According to a recent survey by Specsavers and the Canadian Council of the Blind, conducted by Leger, half of Canadians do not know that 75 per cent of vision loss is preventable and treatable and 51 per cent are unaware or unsure of how often they should get an eye exam.
Eye exams for those without pre-existing conditions should occur at a minimum of every two years, and every year for Canadians under 18 and over 65.
“The survey showed that most Canadians are unaware that most vision loss is preventable and treatable. This is concerning because if you believe vision loss is unavoidable, you may not take preventative measures for yourself or your family such as getting regular comprehensive eye exams,” said Naomi Barber, Clinical Services Director at Specsavers.
The Survey showed over one-third of Canadians (35 per cent) would only book an eye exam if they experienced vision issues. Catching eye diseases early through a comprehensive eye exam allows for preventative measures to maintain as much vision as possible. What many don’t know is that often eye diseases, such as glaucoma, progress without symptoms in the early stages.
“This World Sight Day, we are encouraging Canadians who are overdue for an eye exam to book an appointment with their local optometrist,” said Jim Tokos, National President, Canadian Council of the Blind. “There is a common myth that if your vision is good then your eyes are healthy. Unfortunately, that is not always true. More than 8 million Canadians are living with an eye disease that may lead to blindness. The goal is always to catch eye diseases before eyes start to show symptoms.”
Eye health may change without a person experiencing any kind of difference in their vision. Optical Coherence Tomography (OCT) is a 3D eye scan that helps optometrists see what is going on beneath the surface of the eye and can detect sight-threatening conditions such as diabetic retinopathy, glaucoma, and age-related macular degeneration in its earliest stages. All Specsavers locations include OCT as part of a standard eye exam at no additional cost to the patient or with the OCT costs covered by provincial healthcare where eligible.
“Specsavers has operated OCT for many years in different countries and has proven it is instrumental in preventative detection and management of glaucoma and diabetic retinopathy,” said Barber. “Providing this technology as a part of every standard eye exam is the foundation of Specsavers journey to help end preventable blindness.”
Booking an Eye Exam
Canadians seeking an eye exam can find a Specsavers location and book an appointment with an independent optometrist by visiting Specsavers.ca
ACTION ALERT! Accessible Housing – Tell Parliament: We Need Accessible Housing NOW!
It’s time to rally behind a cause that affects us all – the ACCESSIBLE housing crisis.
Please sign this petition to the House of Commons. And please share widely across Canada.
The Accessible Housing Network is calling for the National Building Code to be changed to make Universal Design mandatory in all new apartments and condos, so anyone can live there, regardless of age or disability.
To sign the petition, please visit the following link and thank you for your support!
https://petitions.ourcommons.ca/en/Petition/Details?Petition=e-4543
Accessible Emergency Alerts Survey-Understanding Your Experiences and Improving Accessibility:
Emergency alerts are important to everyone. They tell us about emergencies and what to do. These emergencies can be crimes, kidnappings, or earthquakes and other weather events. You can get these alerts on your cell phone, TV, or radio. You may also see the alert in a text message or on a social media website. There are two emergency alert tests every year. The next test is on November 15, 2023.
On November 15, look out for any emergency alerts you get on your cell phone, TV and radio. You don’t have to interact with them at all. But we want to know if you can see, hear, or understand the alerts.
After the alerts, please fill out the survey at https://www.at-tainable.com/survey-alerts.html to tell us if you had any problems or concerns with the alerts.
You can fill out the survey even if you miss the test or didn’t have any problems. And if you have received a real emergency alert in the past and had an issue with it, please let us know.
How Do I Participate?
You can take our online survey. The survey starts on November 16, 2023. If you live in Canada and have a disability, or if you are caring for a Canadian with a disability, we want to hear from you. Your answers are important. They will help us send emergency alerts to people in a better way.
What Do I Get for Helping?
If you finish the whole survey, we will send you a $35 Amazon gift card. Please make sure the contact information you give in the survey is correct. If it is incorrect, you will not receive the gift card. You will receive the gift card by email a few weeks after you finish the survey.
Who Do I Contact If I Have Questions?
You can send us an email if you have questions about the survey or want to learn about the survey results. You can also contact us if you want to know about our future projects. Please send an email to [email protected].
In the News
Blind at 47, P.E.I. woman finds freedom, confidence in social life
Jennifer MacKinnon lost her sight in 2020 due to idiopathic intracranial hypertension
For some people, losing their sight later in life would seem like an end.
For Jennifer MacKinnon, it has been a new beginning.
Since going blind at age 47, the Fredericton, P.E.I., woman has tried many new things and experienced a ton of “firsts.”
These things include re-learning to cook, navigating a new washing machine, her first airplane ride – to Cuba, in mid-March, and the list goes on and on.
It hasn’t been easy, but anything is possible with perseverance and a little help from your friends.
“You’re still limited, and you’re learning,” said MacKinnon, now 49. “You’re going from a full-sighted person to someone who can’t see.”
When she lost her sight, all MacKinnon could think of was one day returning to work as a nurse – a goal that, while it brought her hope as well as stress.
“That’s how I define myself,” she said. “I really like nursing. I really do.”
Her doctor recommended she find an outlet to channel her emotions, so she found a new way to spend her days in the form of yet another first.
Multiple times a week – sometimes even twice a day – you can find MacKinnon at Alberton’s Iron Haven Gym, working the machines as much as laughing with her friends.
During a frustrating time in her life, MacKinnon said the gym was exactly what she needed for her mental health to return to form.
When she was a child, MacKinnon was diagnosed with idiopathic intracranial hypertension (IIH) – high blood pressure in her skull.
A shunt in her spine helped manage symptoms for much of her life – until, in October 2019, she started experiencing headaches, felt unwell and had vision problems.
“I said, ‘jeez, there’s something not right,’” said MacKinnon. “And it just kept getting worse.”
She went to the hospital and had a new shunt put in – this time in her head – and felt near-instant relief. It did not solve her sight issues, but the hope was, given time, it could improve.
It didn’t.
A few months later, the shunt shifted out of place and her symptoms returned.
She went back to Halifax for a new shunt replacement; by then, though, her vision was gone.
“I can see shadows, I can see your outline and stuff, I can see a little thing of light,” said MacKinnon. “Some colours are better, overcast days seem to be better. Bright lights, sometimes they’re good.”
Still, she is unable to read, unable to drive or return to work, and needs assistance to get around – whether it be a friend guiding her or using the cane she has been practicing with.
During her first few months without vision, MacKinnon felt lost.
“I just said, ‘OK, I’m going give myself three months of pity party, and then I’m done,” she said. “I just have to move on.”
Losing her sight was rough enough; needing to ask for help made her situation tougher. With MacKinnon’s nursing background, she’s more comfortable giving help than receiving it.
“In the beginning, it was very hard. I’m not going to deny it,” said MacKinnon.
Little things she’d previously taken for granted, like cooking, choosing outfits or washing dishes, were now challenges to navigate.
“When you’re alone and you’re thinking about it, and you think about what you had, you could get yourself pretty deep. I’m not in a bad predicament, because I have the social (life) and I have the will to go … It was a friggin’ eye opener – pardon the pun.”
She recalls one incident involving turned cheese.
“I made lasagna soup, and later on (my husband) went for a piece of cheese, he said, ‘what cheese did you use?’ I said, ‘oh, that stuff on the top shelf on the left-hand-side,’” said MacKinnon. “He said, ‘yeah, full of mould.’”
Now, MacKinnon boasts that she can cook nearly anything, use the washing machine on her own and even use the computer with the help of a screen-reading program.
“It feels good,” she said. “Maybe I’m arrogant in some ways because I know I can do it.”
Despite how hard it was having to ask for help, MacKinnon now finds herself grateful for those at her side – both old friends and new.
One friend, Cheryl Hackett, has known MacKinnon since childhood. When Hackett thinks of MacKinnon, one word comes to mind: brave.
“A lot of her firsts, I did with her,” she said. “Going out to a restaurant to eat. We get into the restaurant and I see her hands shaking and I just say ‘look, we’re just taking this one step at a time.’”
Her biggest support, though, comes from hitting the gym with Hackett, as well as fellow childhood friend Kim DesRoches and new friend Mona Jeffery, who she met through Hackett.
“The gym has been life-changing for Jennifer,” said Hackett. “For all of us, but for her, really.”
In particular, MacKinnon credits the newfound pastime for her growing confidence. In her earlier years, she used to be a tag-along, following the crowd. Now, she asserts herself, voices her own ideas and frequently makes her friends laugh at her quips.
By Kristin Gardiner, The SaltWire Network
‘All the Light We Cannot See’ Casts Blind Actresses
In a new Netflix mini-series, the two actresses playing the Pulitzer Prize-winning novel’s protagonist, are blind, just like the character.
On a set on the outskirts of Budapest, as the crew reset cameras for the next take, Nell Sutton, 7, sat up in bed and asked her director, Shawn Levy, a question: “How will you make it look like night?”
Levy explained that the blue lights, set up around the room, would convey nighttime onscreen. Sutton was satisfied, and settled back into position, headphones on, to start a scene in which her character, Marie-Laure, is listening to the radio way past her bedtime. Her father, played by Mark Ruffalo, comes in and catches her. She tells him that she is learning about the magic of radio waves. “The most important light is the light you cannot see,” she says.
Sutton, cast as the young Marie-Laure in “All the Light We Cannot See,” Netflix’s four-episode adaptation of Anthony Doerr’s Pulitzer Prize-winning novel, is blind. The actress playing the character 10 years later, Aria Mia Loberti, is also blind.
In some ways the set, which took over a site next to an abandoned brewery last year for a few weeks over the summer, seemed like any other: People with walkie-talkies strode past equipment and craft services. But this production was the first time that blind lead characters in a major
television show were being played by actors who were themselves blind, and the attention that went into accommodating those actors, and making the show as true as possible to the experiences of people who are blind, was significant.
“All the Light We Cannot See” is set in occupied France during World War II and follows Marie-Laure, an amateur radio enthusiast and the daughter of a master locksmith at Paris’s Museum of Natural History, and Werner (Louis
Hofmann), a young German radio engineer who is drafted into a Nazi Wehrmacht squad to trace a radio signal that is broadcasting resistance messages.
Marie-Laure is behind the signal, which she sends from Saint-Malo, a town on the northern coast of France, where she and her father moved while Paris was occupied.
The book’s title refers to radio signals, and its protagonist’s sightlessness, but also to moral blindness, Doerr said in an interview on set. “In many ways, Marie-Laure is a much more capable-sighted character than Werner for much of the book,” he added.
The adaptation was directed and produced by Levy (“Stranger Things”), and co-produced by Dan Levine (“Arrival.”) When the book came out in 2014, the producer Scott Rudin snapped up the adaptation rights to develop a feature film. Years later, when Levy learned that Rudin intended to let the rights lapse, he approached Doerr and proposed making a limited TV series instead.
“That was much more exciting to me,” Doerr said. “The novel is like 500 pages; it would be hard to go for 120 minutes.”
Levy said that he and Levine agreed early on that Marie-Laure, both as a child and as an adult, should be played by blind actors. It was a risk for several reasons, Levine said, not least because studios like to cast big names in lead roles. The show has big names — Ruffalo as Marie-Laure’s father, and Hugh Laurie as her uncle, Etienne — but the actors playing Marie-Laure would have to be unknowns.
The bigger issue was how to find them, since there are very few working blind actors. The producers and the casting directors did a global, open casting call, contacting schools and communities for the blind. “I thought, once we go down this road, we can’t go back,” Levine said. “We couldn’t say,
‘Well, we can’t find anyone.”‘
First, they cast Sutton, who was from a small town in Wales and who had starred in a campaign for a British charity, but had no other acting experience. Finding the older Marie-Laure took more time, and the production team saw hundreds of auditions before a tape from Loberti, a Ph.D. student at Penn State University who had no acting experience at all.
The production’s secret weapon, Levy said, was their blindness consultant, Joe Strechay. Strechay has been legally blind since he was 19, and described himself in an interview in his trailer as now being “totally blind.” He previously worked with Netflix on the “Daredevil” series, and with Steven Knight, the writer of “All the Light,” on the Apple TV+ series “See.” “Having a lead character played by a person whose legally blind, this is what we’ve been working for for a long time,” Strechay said.
Strechay consulted on all of the adjustments the production made to the set, including adding tactile marks to the floor that Loberti and Sutton could feel to establish their positioning, giving the actors time on set ahead of shooting to acclimate, and writing the series title in Braille on the directors’ chairs and trailers.
He was also involved in a directorial capacity. Strechay watched all of the rushes with his seeing assistant, Cara Lee Hrdlitschka, who described the scenes to him in minute detail so that he could give feedback on how Marie-Laure’s blindness was being conveyed onscreen. “If someone who’s blind or low-vision does something over and over again, it becomes easy,” Strechay said. “So if it’s supposed to be them arriving in a place they’ve never been before, we look at all those little movements to make sure they’re accurate for that moment, for that character, in the story.”
This led to frequent alterations, including to a scene in which Daniel teaches young Marie-Laure how to use a cane while walking down a busy street. Levine thought Daniel ought to be standing next to the curb, for Marie-Laure’s safety, but on set Strechay corrected him. Daniel would want it the other way around, he said, so Marie-Laure could orient herself by the sound of the traffic and feel the curb with her cane.
These details mattered to Strechay, he said, because he has been generally unimpressed by media representations of blind people. Ruffalo played a blind person in the 2008 film “Blindness,” and remembered mentioning this to Strechay when they first met. “He said, ‘Oh yeah, I saw that. Nice try,”’ Ruffalo said in an interview between takes.
Strechay has also helped the sighted actors understand how to interact with a blind person respectfully. In the scene in which Marie-Laure listens to late-night radio, Ruffalo, as Daniel, removed a pair of headphones from Sutton’s ears. Because of the headphones, she couldn’t hear Ruffalo when he entered the room.
“I know not to startle her, to just give her a little touch to tell her I’m there,” he said, adding that onscreen, Daniel alerting Marie-Laure to his presence this way is also more authentic to the relationship between a blind child and her father. “It was important to me that we approach it this way,”
Levy said, not only because it seemed right, but because it ultimately made for a better show.
Working on this production has made the producers think differently about the primacy of sight in their work. One of the novel’s strengths is how it immerses the reader in Marie-Laure’s experience of the world: through smell, sound and touch. TV is a visual medium, but there are ways it can bring those other senses to the fore.
“It’s so easy as a director to get image obsessed, shot by shot,” Levy said. “And there’s still that, because this is ultimately a television series that people will watch. Creating beautiful images is important to me, but my awareness of the tools that I have as a director is more 360.”
He gave the example of the objects Marie-Laure has on her bedroom windowsill. “They wouldn’t be items chosen for prettiness, they’d be chosen for the sound they make in a breeze, or the texture against the fingertips,”
Levy said. In several episodes, shots of Marie-Laure focus on her feet –walking over broken glass, navigating the streets of Saint-Malo with her cane — and so heightening the viewer’s sense of how she perceives the world through senses other than sight.
Strechay said he hoped Sutton’s and Loberti’s performances would open the door for more blind actors. Sutton shared this hope, she said in an interview on set, adding that she was excited for other blind children to watch the series.
“Sometimes I say your gift is your blindness,” she said. “And I say, even if you’re blind, you can still do anything.”
The New York Times
World Blind Union (WBU) Marks a decade of the Marrakesh treaty
President of the World Blind Union (WBU)Martine Abel-Williamson recently attended the 10 year anniversary of the Marrakesh treaty. The event was planned by the World Intellectual Property Organization (WIPO) in Geneva at the WIPO headquarters.
Speaking at the ceremony, Ms. Martine Abel-Williamson, recalled the WBU’s pivotal role in advocating for the Treaty and ongoing efforts to ensure its full implementation. Referring to a gap between ratification and implementation in some member states, she called on the international community to redouble our efforts and work collaboratively to bridge this implementation gap, ensuring that the Marrakesh Treaty’s transformative potential becomes a reality for all.
Working with World Intellectual Property Organization (WIPO), the WBU led the international campaign to develop the Marrakesh Treaty that would enable reproduction of published materials into accessible formats, such as Braille, large print, and audio editions.
By Fridah Mlemwa
www.ccbnational.net 1-877-304-0968