The Recent Canadian Council of the Blind Study Reveals the Stark Reality of COVID-19’s Disturbing Impact on Those Canadians Who are Blind, Deaf-Blind or Partially-Sighted
BY KEITH D. GORDON PH.D. AND MICHAEL BAILLARGEON
It goes without saying that at this time of crisis for the world, we are all feeling more stress than usual. Now imagine how much more stress you might be feeling if you were facing the dreaded COVID-19 with the additional challenges associated with those living with blindness or vision loss. We, at the Canadian Council of the Blind (CCB) became aware very early on in the pandemic (late February to early March) that many Canadians who are blind, deaf-blind or partially sighted were being heavily impacted by COVID-19. At the same time it was acutely apparent to the CCB that the many government initiatives and programs being announced in response to pandemic-related challenges were, for the most part, not taking into account what we see as the fundamental needs of not only our community, but all people with disabilities. We perceived the need for all levels of government to provide support and solutions to help those living with disabilities and by extension vision loss, get through these stressful times.
We saw it as being necessary to provide the factual support required by governments to act. Working in cooperation with Louise Gillis, CCB National President, we determined that our best course of action would be to survey the vision loss community and report our findings. The survey was designed to specifically identify what impact COVID-19 was having on those living with blindness or vision loss. We wanted to know their current circumstance and daily experiences due to the pandemic, and what their specific concerns and needs were.
The survey, conducted electronically during the week of April 7th to April 14th, attained a robust sample of 572 responses with respondents representing all provinces. We promised to let their voices be heard so that they would not be left behind, or forgotten. Our goal, then and now, was to make sure that the members of the vision loss community would be provided with the support needed, both socially and economically, to weather the COVID-19 pandemic. The results are a call to action and paint a disturbing picture of the experiences Canada’s vision loss community are confronted with, on a daily basis, during this COVID-19 crisis.
Key results of the study showed high levels of stress in the vision loss community. Respondents are very concerned about social distancing – they’re unable to see how far they are from others and are concerned that others don’t realize that they have vision loss and tend to come too close. Respondents feel unsafe when going out.
Those living with vision loss are particularly concerned that the effect of the added stress from the pandemic on their mental health may cause them to become overwhelmed.
Her Excellency the Right Honourable Julie Payette, Governor General of Canada
This was re-enforced Thursday May 7, during a virtual conversation live streamed on YouTube, between Her Excellency the Right Honourable Julie Payette, Governor General of Canada and Dr. Mona Nemer. Canada’s Chief Science Officer, discussing the importance of research and science in the times of global pandemic. When the conversation turned to a discussion on our vulnerable population and people with disabilities, the Governor General remarked as to having received a communication from the Canadian Council of the Blind; “that was alert particularly to the fact that people who are vision impaired are quite anxious in the time of the pandemic and that it was affecting them in many different ways.”
Survey respondents are stressed about their inability to access a doctor or health care practitioner and to meet their financial obligations, and about their ability to maintain their present standard of living. They’re further stressed due to their already-fragile economic status.
Respondents also expressed concern about having transportation and finding someone to accompany them should they have to go to the doctor or hospital.
Shopping is a concern as plexiglass shields make it difficult to negotiate payment and those with seeing disabilities are uncomfortable interacting with staff. About half of the respondents indicated that they had a personal care worker entering their home, about half of whom weren’t wearing proper personal protective equipment.
Respondents are concerned that when the COVID-19 pandemic is over, they’ll discover that their job no longer exists. Many who were asked to work from home have discovered that they don’t have the proper accessible devices and technology necessary to do their jobs from home, and that their employers have refused to provide or fund them.
The survey succeeded at identifying the challenges confronting those living with vision loss during the COVID-19 crisis. As Respondent 211 commented, “What’s affecting my mental health is this prolonged and extreme isolation. As a blind person, I already live a fairly limited life when referring to freedom of movement and independence and now even that small wedge of my active life has been completely eradicated.”
It’s clear that the vision loss community is being heavily impacted by the pandemic. It’s further evident that there’s a need for immediate action from all levels of government to provide support and solutions to help those living with vision loss get through these stressful times. The CCB’s resulting report includes detailed recommendations for all levels of government to consider.
In open-ended questions we discovered that there were a number of respondents who were concerned about their ability to see their eye doctor and that they might lose vision as a result. They also expressed a concern about not having an accompanying person with them when they went for their eye appointment and concern over maintaining social distancing in the doctor’s waiting room. The following are typical responses we received:
Respondent No.444: “I’m worried how long the pandemic and restrictions will last, and the impact on my appointments with doctor and optometrist.”
Respondent No. 441: “I am not able to get my monthly shots in my eyes, vision is going down.”
Respondent No. 547: “Can’t see my eye doctor. I need a new prescription and would like glasses instead of contacts.”
Respondent No. 465: “…my fear is having to do things like my eye appointment by myself when I am used to having my daughter with me to guide me and point out hazards in my way.”
Respondent No. 462: “Concerned about maintaining social distance in eye doctor’s waiting room.”
Editor’s Note: Both Keith D. Gordon, Senior Research Officer and Michael Baillargeon, Senior Advisor Government Affairs and Special Projects are colleagues at the Canadian Council of the Blind, advocating on a daily basis, for Canadians who are living with blindness or vision loss.
The Albert A. Ruel Road to Blindness
A 21 year old man stood on the beach at the Sproat Lake Provincial Park with friends early in May of 1977, and upon gazing across the lake found the Gulf Oil sign missing from the dock-side filling station there. When this fact was shared with his companions they glanced at him with puzzled looks and said, “No Albert, the sign is still there”.
That was the beginning of a road through confusion, anger, isolation, loneliness and discovery for me. It all began with a visit to a local Optometrist who could see that my vision wasn’t right, but that corrective lenses wouldn’t help. He then referred me to a General Practitioner, where I received a clean bill of health and an additional referral. This time to an Ophthalmologist. Immediately upon peering through the dilated pupils, Dr. McKerricher was able to see the problem, Retinal Vasculitis.
Now, you would think that all would start to improve at this point, but that couldn’t be further from the truth. You see, CNIB, from 1918 until 1985 only served the needs of people who were “Legally Blind”, a level of vision loss I wouldn’t reach until November of 1979. The words of Dr. McKerricher still echo in my mind today, “Albert, I don’t know what has caused this and nothing we’ve tried is helping to stop it, and you’re not blind enough for me to refer you to CNIB”!
In the middle of this transition from 20/20 vision to “Legally Blind” came the Motor Vehicle Branch and it’s rules of the road. On August 3, 1978 I drove a car for the last time as my vision had reached the level at which operating a motor vehicle became too dangerous, further intensifying feelings of fear, isolation and anger. Sadly, through this period the only available guidance and support was through family and friends, but not the experienced professionals I needed at the time. Although these support systems are critically important they can often be smothering and facilitating, rather than encouraging and supportive.
With gratitude, and some trepidation I finally was able to access CNIB services in November of 1979, and the world opened up then. There I was able to meet other blind people and receive the daily living and mobility skills required to live independently in this sighted world. I learned elementary braille and began to discover technology as necessary tools of independence.
Thankfully, in 1985 CNIB’s National Board altered the course of service to visually impaired Canadians forever. They added a third prong to their Mission Statement, “To promote sight enhancement services”. This opened the door to all Canadians who were beginning to lose sight, as well as those who had a fear of vision loss to access the full range of CNIB Support and Rehabilitation Services. So now, whether it’s someone’s Mother who is experiencing Macular Degeneration, or an Uncle experiencing the affects of Glaucoma, all have the ability to seek information, guidance and support as all involved deal with the fear and anxiety that accompanies such life altering experiences.
With the help of professional Rehabilitation Workers and Employment Counselors I was able to continue traveling independently within my own community, and even more remarkably anywhere in the world I desired to go. I managed to attend College in Nanaimo and New Westminster, as well as traveling to the Mayo Clinic and to doctor’s appointments in Nanaimo and Vancouver without assistance. All of this while living with some usable vision, but not yet needing a white cane for travel.
During the mid 1980’s I was a stay-at-home Dad and did all that was required of that challenging work, from changing diapers to preparing meals, and from cutting the grass to maintaining our home. I even took a woodworking course through Alberni’s Adult Education program and built and restored several pieces of furniture. Of course the 1958 Chevy Impala in the garage was my pride and joy, and I devised ways to do much of the work it required.
I also joined and participated in many community activities, like the local Car Club, and a disability support group that catered to the needs of people with many different disabilities. Of course, continued participation in family life remained of critical importance through this period.
In 1989 a secondary condition began to extinguish the vision that remained, which set into motion a new stream of professional rehabilitation services and supports. By the spring of 1990 Glaucoma had turned out the lights completely, and the darkness I had feared so desperately was upon me. Strangely though, I found this to be a great relief rather than the tragedy I had imagined it would be.
Through several professional rehabilitation sessions, and by joining peer mentoring and advocacy groups I was able to come to terms with this strange feeling, and to learn additional skills and strategies for living with no visual cues of the world around me. This is also about the time that I decided to explore CNIB as an employer, and to see if I could provide the sort of guidance and support to others that had been my pleasure to receive. Those 14 years were a wonderful experience of ongoing discovery for me, as teaching may be the best way to solidify one’s own learning. In other words, those we assist through this transition in turn help us all as we develop best practices and improved service.
Following a 14 year career with CNIB I also served the blind community as the first National Equality Director employed by the Alliance for Equality of Blind Canadians (AEBC), and as a Basic Computer Literacy Trainer with the Canadian Council of the Blind (CCB). Most recently I have enjoyed coordinating the CCB’s newly launched Get Together with Technology Program in Western Canada, which brings to the fore my passion for assistive technology and the power of peer mentoring.
Without sight I have continued to travel far and wide, with trips to Conventions of and for the Blind in Anaheim California and Melbourne Australia, as well as to many events and activities in Toronto and Vancouver. Of course my work has taken me to many communities throughout Western Canada, and most particularly nearly all regions of BC and on Vancouver Island. None of which would have been possible without the services and support of organizations like CCB, AEBC and CNIB.
For most people blindness generates a fear of extended movement, both within one’s home and community, but that doesn’t have to be the case. Independence comes from personal desire and increased skill. Many community organizations can assist with both through their mentoring and skill development programs. I remember always that life has little to do with what happens to me and 100% what I do about/with it. There is a quote I like to use from the National Federation of the Blind in the USA, “With adequate skill development and opportunity blindness can be reduced to the level of a nuisance”, and nothing could be closer to the truth.
Helen Keller said many years ago, “There is nothing more tragic than someone who has sight, but no vision”. She also challenged the Lions Clubs of the world to become the “Knights of the Blind, and to take up the crusade against darkness”. I too joined a Lions Club in 1992 and continue to work on the crusade that Helen Keller began in the 1920-s.
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