This is the second week of Advent. Our church has a guest preacher, Drew Melton, who has been leading on our Advent series “Journey Through Darkness.” Last week’s sermon was “Waking up in Darkness” where we were challenged to peer into the darkness and not look away.

From my notes:

Usually, I dread the holiday season. This is the first year that I wanted the tree up early and had to force myself to wait until after November 11th, whereas usually the tree isn’t put up until 1st weekend of Advent, as per the family traditions that I grew up with. I had to force myself to “be in the Christmas spirit” because I have children. I think it is the “be of good cheer” and “most wonderful time of the year” sentiments.. people telling you to be in a certain mood and feel what you don’t feel. I was that way for at least a decade – not wanting to do this “stuff” and to get it other with. 

On this Sunday, the first Sunday of Advent, I sat down after a difficult week with juggling my children’s schedules; their sleep issues, in some cases, the refusal to go to school, and getting a final payout/cheque from the Hep C Class Action Lawsuit. 

It was an unexpected contribution to my life and I called my sister when I first got the letter about this. She had been contacted in the Spring whereas I only got the letter in September. ”Yes” she said. “I told them your address as they didn’t seem to know that you existed.” This cheque was also a depressing contribution to my life, as I mused that this amount was what they deemed my father’s life was worth. A pitiful amount compared with what he would have contributed had he not died from Hepatatic Cancer in 2005. The richness that we would have had with his involvement in the life of me and my family; actually getting to meet my husband, to meet my twins, to encourage my life’s path. My sister said that when she got the letter, she wrote them back and “gave them a piece of her mind”. I don’t think that depth of his absence can fully be understood by those who were not affected by this disease.

As it has now been over 15 years, the rawness of the grief is less and is a part of the darkness that one wishes to ignore at times. To push aside, so that we can go on with the mundane. 

This past week, “Strange Voices in the Wilderness” we are reminded that Advent begins in the dark, so does the Gospels. We were reminded that in the darkness, our other senses are heightened because we can not see. So then we listen better/more. I hate the darkness; pitch blackness. Always have. Other senses heighten. More like I go into panic mode because in the dark, most people hear better; are more aware. I have limited hearing and can’t tell direction, hence I rely on my eyes and the visual cues. Not being able to see the cues means not being able to function in the dark. For me. 

From my notes:

“Hearing is heightened in the darkness, but our way of hearing does not change. The volume is up but it is still the frequency. In darkness, we hear other voices that we do not usually experience.” 

Melton challenged us to not deny/brush the voices off, but to listen for the words that may be hard to hear. To train our ears in a different direction- to unlearn the voices of our echo chambers or turn off ‘the usual’ voices temporarily.

This past month, I finally was able to divest myself of the piles that have accumulated from purging. To clean up my house by letting go of items that are not needed, and to finally post items for pick up. It was freeing to see the large piles in my front hall diminish, and I realized that I was depressed – partly from looking at them, and partly from not having the energy to deal with them. I can see the light. I have been able to stay on top of the dishes and fold most of the laundry this past week/month. I have started baking again for the church social hour and school bake sales. I play the holiday music and indulged myself in reading books and watching old musicals (Danny Kaye). I look forward to week 3 of Advent season.

Today, I found an article online from the Vancouver Sun. I will copy/paste it below so that it is still there when they remove the links.

This article basically talks about the struggles that the “deaf, deafened and hard of hearing … who are nearly five per cent of the population, or 1.3 million Canadians, according to the most recent data from Statistics Canada. The Canadian Association of the Deaf puts that number much higher, at 10 per cent, estimating that 3.8 million Canadians have hearing loss, with more than 380,000 estimated to be profoundly deaf.” face with accessibility, specifically the lack of captioning, and the fact that local governments could add this to their budgets.

People with ‘invisible disabilities’ are being left out

Governments, especially at the local level, slow to adopt closed-captioning for the hard of hearing by Tyson Burrows Sep 03, 2021 (Vancouver Sun)

After years abroad, Steffani Cameron returned to Ottawa to a disappointing welcome. Despite being hearing impaired, Cameron regularly enjoyed live theatre and, to mark her homecoming, she’d planned a night at the National Arts Centre.

But without captioning, the threads of audio that reached Cameron’s hearing aids weren’t enough for her to piece together and she struggled to understand the performance.

“I didn’t hear any of the dialogue, I missed 90 per cent of what was going on in the show,” she said. “I came home crushed. This experience that I thought was going to be my Canadian welcoming home and everything just left me … depressed.

“I mean, I saw opera in Croatia, and it was completely closed captioned.”

Closed captioning transcribes audio to text, both spoken words and non-speech elements such as sound effects and speaker identification.

Cameron works part-time doing captioning, seeing firsthand how captions improve the accessibility of film and television. But when attending conferences and council meetings, where captions are hardly ever offered, she is always aware of the difference they would make.

Captioning is essential for the deaf, deafened and hard of hearing — people like Cameron — who are nearly five per cent of the population, or 1.3 million Canadians, according to the most recent data from Statistics Canada. The Canadian Association of the Deaf puts that number much higher, at 10 per cent, estimating that 3.8 million Canadians have hearing loss, with more than 380,000 estimated to be profoundly deaf.

Canadians aged 65 and older, 18 per cent of the population, are more likely to be affected, with 12.2 per cent of seniors reporting a hearing disability. Canada’s seniors will make up 23 to 25 per cent of the population by 2036, driving an even greater need for communication accessibility.

Accessibility is an issue that worries many.

Also affected are those who speak English as a second language and those with learning difficulties.

“An informed citizenry is necessary for democracy to flourish,” said B.C. seniors advocate Isobel Mackenzie. “It starts with not just engaging in elections — it’s engaging every day and understanding what’s going on.”

Local government affects our day-to-day lives more than the federal or provincial governments, said Mackenzie. But at the local level, communication accessibility is at its weakest.

Step 1 is the recognition of these “invisible disabilities,” she said. “We need to start pushing the envelope to have that broader understanding that a disability is more than just somebody with physical mobility limitations.” Vancouver, Surrey and Richmond are among B.C.’s largest municipalities, each with a large tax base, and yet none captions council meetings. Victoria, a city of just 92,000, has captioned its council meetings since 2019.

At $10,000 a year for auto-generated captioning, a fraction of Victoria’s more than $260-million budget, Mayor Lisa Helps sees its cost as far from prohibitive. In terms of accessibility, she describes it as “low-hanging fruit.”

“Closed captioning is one thing that councils can do to send the signal that the city is working on accessibility,” Helps said. “It’s really important to me as mayor because we want Victoria to be an inclusive and welcoming place — regardless of people’s ability.”

“It’s about inclusion, having a stronger and more robust democracy. Building an inclusive city creates resilience and creates diversity. And the more people we have engaged in, and able to participate in, council discussions … the better and more resilient democracy we’re going to have locally.”

It takes time and money to address barriers to physical accessibility, Helps said, but that isn’t the case with captioning.

In Vancouver, communications manager Kirsten Langan said that captioning of council meetings is “currently being reviewed by staff” and that the process was “put on hold last year due to budget restrictions resulting from the pandemic.” In Surrey, communications project manager Amber Stowe said the city is “in the process of exploring options,” with only a few events captioned.

Commitment to hearing accessibility varies among other local decision makers, such as park and school boards, regional boards like Metro Vancouver, and transportation authorities like TransLink that all play large roles governing our daily lives.

At Metro Vancouver, “various options for closed captioning are under consideration,” said communications specialist Greg Valou.

At TransLink, which operates across Canada’s largest single transit service area and oversees more than 250 million rider journeys annually, board meetings have been captioned at no cost through YouTube since 2016. The decision to publish to YouTube “was a natural one,” centred on the accessibility of the platform, said TransLink spokesperson Gabrielle Price. “We wanted to ensure that anyone who wants to participate could participate.”

Recent changes to federal legislation pave the way to developing accessibility standards Canada-wide, but without a clear framework for regulation and enforcement, compliance cannot be guaranteed.

Regulation is possible. For example, the Canadian Radio-television and Telecommunications Commission has required Canadian broadcasters to caption 100 per cent of their programming since 2007. Yet accessibility remains unregulated in many other Canadian sectors.

The 2019 federal Accessible Canada Act aims “to make Canada barrier-free by Jan. 1, 2040.” But it applies only to organizations under federal jurisdiction. And any standards set as a result of the act are voluntary and become mandatory only if and when these standards are turned into regulation — something that could take years.

It’s all “aspirational,” Mackenzie said of the federal legislation. “It’s not a bad thing, but it doesn’t get to the meat of what we are going to have to do to improve it.

“For people with physical disabilities, we’re miles ahead of where we were 30 years ago. … So maybe the next 30 years is going to focus on these ‘invisible disabilities.’”

Carla Qualtrough, federal minister for disability inclusion, did not respond to calls.

Retired physician Hugh Jones, at age 78, has relied on hearing aids for over two decades. Before then, he “managed to limp along,” doing what was necessary to cope with his worsening hearing, such as sitting close to those speaking at meetings.

“I’m fortunate that I can afford the really sophisticated hearing aids,” he said. Their price is out of reach for many. But even with hearing aids, he still experiences barriers to accessibility due to the acoustics of some locations, a difficulty closed captioning would help overcome.

Provincially, the schedule for ensuring accessibility regulation is little better than at the federal level. MLA Dan Coulter, B.C.’s parliamentary secretary for accessibility, says change “might be a ways off” and that “standards generally take about two years to develop.”

According to the 2021 Accessible British Columbia Act, these standards are to be developed by an 11-person provincial accessibility committee, and deadlines are loosely defined.

“There is sort of a 10-year timeline that’s laid out in the legislation,” Coulter said. “We don’t want to set up artificial deadlines for anything … There’s no possible way that we could identify every single barrier in society and say we’ll be able to remove them in 10 years.”

To Coulter, the B.C. law enables further steps. “It’s like a skeleton and now (the B.C. government) needs to put meat on the bones.”

But Gabrielle Peters, who calls herself a disabled writer and consultant, said not enough is being done.

Peters was contracted by the Broadbent Institute to do a report to help develop the accessibility legislation in B.C. But when the Accessible British Columbia Act was introduced in April and passed in June, she didn’t see her work reflected in the legislation.

The most important parts of accessibility legislation — clearly defined deadlines and enforcement mechanisms — remain weak, she said.

The act does allow for inspections and fines for non-compliance. The extent of enforcement is vague, compliance is mandated only for the provincial government and “prescribed” organizations, there is no mechanism for complaints to be submitted by the public and there are no timelines for implementation.

“What’s the point? It’s like a wish. It’s like, you might as well open your window and look for a shooting star to wish on,” said Peters.

The Wavefront Centre for Communication Accessibility, formerly the Western Institute for the Deaf and Hard of Hearing, works to eliminate communication barriers across B.C.

CEO Christopher Sutton of Wavefront Centre for Communication Accessibility. Photo by Jason Payne /PNG

“Legislation doesn’t exist in every province or every jurisdiction,” said Wavefront CEO Christopher Sutton, “so there is not really a lot of consistency.”

Ontario passed the Accessibility for Ontarians with Disabilities Act in 2005, the oldest legislation of its kind in Canada, establishing the goal of achieving provincewide accessibility by 2025 and requiring Ontario businesses and non-profits to submit compliance reports every three years. Manitoba, in 2013, and Nova Scotia, in 2017, followed suit, passing their own accessibility acts.

“When I’ve worked with municipalities on accessibility, the people that are working on those portfolios, very knowledgeable, very excited, they’re passionate about it,” said Sutton. “But getting it up to the city, the general manager or the city manager, or the budget makers, that’s the challenge. … At the end of the day, a lot of people see the cost for accommodations to be very burdensome, but generally it isn’t.”

YouTube offers free auto-generated captioning, though the quality can be poor if not monitored and edited. Other providers offer auto-generated captioning, supplemented by artificial-intelligence software, for about $10,000 a year. Human-generated, real-time captioning costs $150 an hour or more.

“We need to incorporate accessibility as a budget line item. … It’s a cost of doing business,” Sutton said.

New Westminster city councillor Nadine Nakagawa. Photo by Jason Payne /PNG

In January 2020, New Westminster Coun. Nadine Nakagawa tried to bring closed captioning before her council as part of a motion to address a range of accessibility issues. She worries that, if left to the discretion of municipal governments, changes will be less likely to occur.

“And If we’re waiting for people from the disabled community to raise this, we’re functionally excluding them from being able to be a part of community discussions to start with,” she said. “It’s a way that the status quo replicates itself.”

With the onset of the COVID-19 pandemic, priorities shifted. Nakagawa’s motion was set aside.

Accessibility of local government is also of concern to immigrant settlement groups, but they are more concerned with language accessibility. To the Immigrant Services Society of B.C., doing away with lesser-known acronyms and government jargon would increase accessibility across the board.

In 2019, Canada welcomed more than 341,000 new permanent residents. And, some 21.9 per cent of the population had immigrant or permanent resident status in 2016, according to StatsCan.

“What would help more than anything else is a commitment from the (city) councillors, who are doing the speaking, to speak in plain language,” said Lisa Herrera, lead instructional co-ordinator for the society.

When barriers to accessibility are removed, everyone benefits, she said: “If you make something accessible to the people who have the disability, or the people that would have trouble with accessibility, you actually make it more accessible for everybody.”

To people such as Steffani Cameron, the changes needed are clear — and clearly beneficial to all.

“If we’re making it so that it’s only easy for people who are perfectly healthy … then our society is being geared to those people as well, because you’re not hearing everybody who needs to have their voice heard,” she said.

“Until you mandate it, people don’t do it. Nobody’s going to do it unless it’s profitable, and it isn’t profitable to (care) about the hearing impaired.”

I looked at what has been posted and I realize that it is a bit disjointed, but then that is what life has been like .. not just because of COVID times, but this is just how things are. How I have likely always been.

On twitter, I follow various local persons related to Autism interests, and advocacy that I likely need to aware of. I also follow various disability advocates as well.

Since having my children, I have been thrust into an alien world; learning about autism (previously unknown to me), learning about supports for my children, financial concerns like RESPs, and also about RDSPs. I have been fortunate to be able to provide these things for my children, but I realize that there are those parents out there who can not. We are fortunate that we can pay for our twins’ services out of pocket without too much deficit.

This has been frustrating to me in general, the definitions of disability. I suppose that technically I am disabled as I am hard of hearing. I have had this since birth and have worn hearing aids since I was 4. Yet, by the standards outlined by Revenue Canada, I do not qualify for Disability services, Disability Tax Credits, or a Registered Disability Savings Plan(RDSP).

My hearing loss is severe; I do not hear high pitches – birds, cell phones, pagers, fire alarms. I started by wearing bilateral analog “behind the ear” hearing aids, and then in high school, I did the “in the ear” type, mostly because of my vanity. I thought that the other type was too noticeable. I also gave up on wearing 2 in my teens as it either squealed (feedback like a microphone) or was an “expensive ear plug”. I wore that type for at least a decade, and had to be talked out of it by my new audiologist as the “behind the ear” type is appropriate for my type of loss. She convinced me to get a single digital “behind the ear” in the right ear. This was the first time that I bought my own, as I had finally started my career (luckily with benefits that included hearing aid coverage). I was 28 or 29.

As a child, my speech was impaired because, of course, you say what you hear. Large rooms with high ceilings and crowds were not fun. Gym class was awful. In elementary school, I would be pulled from class to work with a speech therapist on my “S” and “F” as I did not say these well. I still have difficulty with “s” to this today. Mississippi is fine, but “Sam” may be heard as “fan”. It took a long time for me to learn that people mishearing things that I say is not always my fault.

Over the years, you learn to adjust how you function. I unconsciously learned the skill of lip reading. The year that I had the professor who was a closed lip talker with a strong Scottish accent was hard on me. My third year of my Masters degree was the first time that I had to tell a teacher about this issue. As I had been taught to just do my best and try not to dry attention to myself or my hearing loss/struggles.

I remember going to see one of the Lord of the Rings movies with my sister, (a rare thing, as we were both home for Christmas and hadn’t lived together since I was 16) and she said that she had a hard time hearing the movie and understanding it, especially the part with the Elves (Liv Tyler and others). She asked how I managed in movies “like that”. I told her that is how it always is for me at movies and I just get the gist from the scenes. When I dated my husband, he learned to ask if there was anything I needed explained from the movie. I would say, “well it was about a guy who worked at a _____ and this group of terrorists came to steal the “thing”…” and he would cut me off and say, oh this is what you missed them saying/explaining at the beginning. ” I sort of hated that he did this as it made me feel dumb sometimes and ruined my enjoyment of the movie.

Over the years, things have improved. We go to Cineplex and they have closed caption system that is fabulous. It can been a hassle at times as not all the movies that I want to see have CC or run in theatres where the CC works, even though it may be advertised as such. Their previous “Rear Window” system sucked as you had to be in a certain area of the theatre to use it, and this was before you reserved seating. So I wasn’t about to tell someone that I need them to move so that I could watch Harry Potter or Marvel movies. Also the staff often had NO clue how it worked either. With the current system, you get a personal device that you put in your cup holder that you can adjust to your height, etc. As you can see, the lines of dialogue are divided on the 3 lines, and also they are like blinders. Only I can see it in front of me, it will not bother the people next to you except that they will look at you weird wondering what that “thing” is. Hubby has looked over my shoulder at times to see a) what does it look it b) what the hell was that line that I missed? It works well for the most part, although there are times when it misses dialogue. Sometimes it will even give the song lyrics, which is also cool. This device and my Scene points have vastly increased my movie going experience for the past decade.

I didn’t start using closed captions/subtitles until I moved here to BC. One day, a friend from back home was visiting and playing with the remote on my TV and turned it on by accident. I remember saying “WAIT! No. Don’t turn it off! How did you get that?!” I have used CC ever since and my tech saavy hubby had to figure out how to download subtitles for me for all shows and movies. In the late 2000’s, he had to burn the subtitles onto the DVD and on occasion, the synchronization would be off thus spoiling my enjoyment. As the years progressed, he learned about digitization and on demand CC as we have used ROKU for at least a decade. I still worry that if something happens to him, (hospital, divorce -not likely, or death) that I will never be able to watch TV again as I can never figure out getting the captions, (even though he has shown me numerous times how to do it). I have, on occasion, watched a show without the use of CC but I can only do it when I know the show well, and it is not a complex plot. I did this for Big Bang Theory or Charmed, but CANNOT do this for any Law & Order, NCIS or that type of show.

My children are now 9, and will be 10 next month! They understand that I need to wear my hearing aid to hear them better; that I am not deaf without it; but they are also 9, with autism and now ADHD (as of December 2020) so I still have to repeatedly remind them that I can holler from another room at them, but that if they want something from me, that they have to come to the room that I’m in. (Not fair, I’m sure, but such is life in my house) They still haven’t really grasped the complexities of my hearing loss (remember the not hearing fire alarms, birds etc) and so I am often frustrated as I cannot really have conversations with them in the car when I pick them up from school because I’m driving and they are behind me.

Well that’s enough for now.