Looking in the darkness

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:

“Pandemic affected our life and how we do things; we had to do grief from a distance, and distance our physical selves, which led to more emotional distance. We are desensitized to grief and darkness – Advent season challenges us to face the darkness so that we can fully embrace the light that God and Jesus brought to the world.

There is power in seeing and being seen; especially in darkness. We prefer to look away because it is too hard to look at people.

Advent provides time to revel in our brokenness, to be in the darkness and to anticipate the Light.”

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.

Article re: “Invisible Disabilities”

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.”

Reflections from this weekend

For the past few years, I/we (hubby and I) have been donating towards a scholarship fund at one of my alma maters. I used to have a career in healthcare when I first met my now spouse, and hubby suggested that we create a fund for other women in my field. I looked at the extensive list of scholarships and bursaries for this school and opted to contribute towards one in existence. Due to the circus that is my family, hubby and I weren’t sure that we could commit to a specific amount of money per year and this gave us the flexibility to donate as we were able.

Due to having to advocate for my twins, I have given thought to my own journey with my hearing loss and what advocacy I or my mother had to do. In hindsight, there was very little advocacy needed in my school journey in regards to accessibility. My mother told me that it was actually my grade 1 teacher, Ms. Smith, who advocated to the school that I didn’t need to be in remedial or special ed class – that I was a bright girl who just didn’t hear or speak well. My mother told me this when I was in university as I was reviewing my old school memorabilia and kept seeing “will be going into a NORMAL class” in the next grade. I was perplexed about why that wording was used. I also remember that there were a few cases that my parents had to explain to teachers in my junior high years about what my hearing loss really meant, and thus I ended up being moved in the seating arrangements from alphabetical to visible line of sight (for lip reading).

So last year, I asked the bursary/scholarship office about a disability scholarship that was in the list and its history. It was started by an alumni who is physically disabled. I spoke with this person to ask if they would be open to my adding our funding to this instead of the “women” one. I was told that the terms of the fund were due to be renewed (as it was for a fixed period that was lapsing). I told the scholarship office about this conversation and left it with them to sort out. Totally forgot about this conversation until an email thread this morning.

The conversation is to explore creating a new one and renaming it the “X and Y Accessibility fund.” Upon seeing my surname as the Y, I physically shuddered and replied that “my initial thought is that we don’t need our name on this fund.  It could simply be call “Accessibility Scholarship”.  I grew up with a father who gave away a lot of money but he did not broadcast this fact.  I don’t really know that I am comfortable with our name on it, but I will see what hubby thinks”.

I asked hubby and he agreed. We don’t need our names on anything. I’m not sure that hubby has the same reasoning as I do. I grew up with a heritage of faith and service. While I didn’t grow up in the Mennonite faith, my parents are both Displaced Persons due to their Mennonite faith. It was not openly discussed but there were certain things that we understood in our family. I suppose they are called the “Family Rules” that every family has. They vary, of course, from family to family based on their values and beliefs. I grew up with a strong connection to church. It felt like we were at church even when it wasn’t Sunday. Both of my parents held positions of service in whatever church we were in but in some cases, we were not members for various technical reasons.

The “rules” that I grew up with were:

  1. Do a good a job at whatever you commit to. Don’t commit if you aren’t going to do it.
  2. Don’t quit just because you don’t like something.
  3. Don’t drink, do drugs, have premarital sex. (“Don’t be like your friend so and so” was often said to me when I was in high school.)
  4. Don’t tell people about your money.
  5. Don’t buy something on credit card unless you have the money to pay for it. ALWAYS pay the bottom line of the credit card, not down payments.
  6. Don’t go into debt if you don’t have to.

So to that end, I never had a student loan (it was the parent loan), worked for my living, paid the credit cards in full, etc. Mission was an important aspect for my father. He was often donating to something, The Shantymen’s Ministries, missionaries, Alumni things, the list goes on.

On a rare visit back East to see my family, I mentioned to my mother that we still didn’t have our tax refund yet (it was August) because we were being audited. We had never been audited before but it was our first year to claim the DTC for our children, so it was an obvious irregularity in our finances. My mother’s reply was “oh yes, your father got audited too.” I was shocked. She said that because he donated 80% of his funds to charity, they got audited for 6 years in a row, but after a while they (Revenue Canada) realized that this was just what Dad did and stopped after that.

My father did not broadcast what he donated or to whom. He was not one for titles. So even though he had a PhD, he did not insist on the title “Dr.” I actually didn’t realize that he had a PhD until I was in high school. “Yes. ” my mother replied. “Why do you think we ask for Dr. Y when we call his office?”

My last comment on this blog is about my learning to advocate for accessibility. Last night, hubby and I had a rare date night with dinner and a movie. While in the restaurant, my conversation went back to my “struggle” with my hearing loss. I said “while I know in my head that others struggle with hearing certain things, I also thought that it was my fault when I couldn’t hear things well. And it reminds me of a twitter post or something that I read earlier in the week. It was something along the lines of “able bodied persons making the disabled feel that they have to acclimate to the standards of society, but in reality it should be that society accommodates me and my disability”. I told hubby that I never thought of it that way before because I have had to survive/navigate the world with this hearing loss and it was just a given that I wasn’t going to function as well as I could, but I made do. Having to learn how to be a “tiger mama” and fight for my kids and what they are entitled to has been tough for me as I don’t want to burn a bridge or potential ally, but I think that lately a lot of advocates are just tired of being pushed aside and are raising their voices so that we are loud and in the end, the powers that be, society, whoever, will have to listen.

Ok. I need to go do something else for a while like chores and then back to genealogy stuff. 😉

COVID and my disability – part 2

My mother worked hard to make me function with my hearing loss but not stand out visibly in society as having a disability. A lot of people either don’t realize (until I start to talk) or forget that I have hearing loss. People with hearing loss speak as we hear. I was told that due to my hearing loss, I apparently center my speech further back in my mouth so that the sound vibrations are closer to my ears… (or some sort of odd explanation like that) hence my voice pitch is lower than most. (This makes sense as I don’t hear high pitches well.)

I have met people who later tell me that they knew I “had something” but they weren’t sure if I was deaf or hearing impaired. (until I told them, which I do at times when I need to tell them that I lip read, meaning “stop mumbling!!”) over the years, I have had some interesting conversations that range from thought provoking to down right rude. (One conversation began with “Do you know sign language?” to which I replied after a stunned pause with “No, I don’t know any deaf people” to which he replied with “Oh so you just wear a hearing aid.”)

COVID has shown me how well I do/not function, as I have had to be in on Zoom calls, supervise my children in their online school sessions, go to the store, medical appointments, etc where I have to wear the mask and be with others who use the masks as well. We did a year of online school with my children where I bounced between screens/rooms to help my children with their “listening” and assignments. I learned that I didn’t always get everything that was said because it was muffled, we were in a class with a bunch of 8-10 year olds, or frankly I was bored. If my kids hadn’t had their EAs, I would have missed a lot of things necessary to make sure that my twins got the work done.

During the year, I had school/child related meetings to attend and so I learned a lot about TEAMS, and Zoom. I liked Zoom meetings in that I didn’t have to leave my house and drive anywhere, find parking, sit in a large room with questionable acoustics to hear information that may or may not be new/relevant to what I want to know. Some Zoom meetings that I attended such as the ones with BCED Access had an interpreter and manually entered closed captions, that a panel member volunteered to do. Other meetings were my local PAC or District PAC (Parent Advisory Committee) and I somehow ended up on a newly launched Inclusion of Diverse Learners Committee. I look forward to seeing how this evolves and whether it helps/impacts the targeted cohort.

In going out in public with mask wearing, customer service has been interesting. There are many times when I had to explain that I read lips, and the other person was able to accommodate by stepping back and removing their mask so that I could read their lips, which was helpful. Other times, I’m sure that I had inappropriate replies/responses to whatever was said (which I likely do/did regardless of this mask-wearing times that we have/are experiencing). I had various people on Facebook point out variations of this mask for me. Obviously forgetting the fact that I would need to hand them out to others to wear, not that I would the one wearing it. (FYI, there are some scary looking pics on the internet of the various versions of these.) What I should have worn was one of these pictured below, which is a moot point now I suppose.

I got fully vaccinated last month but lament that my children are too young to get it. Even if they were of age, I’m sure it would be a battle for us with at least one of them (which one I’m not sure at the moment) as I have read of other facebook posts by other parents who asked where they could go with their ASD child.

As my children have a heart condition, I consider them to have a compromised immunity hence hubby and I still wear masks when we do errands, even though we see others who do not.

I’m still stunned when I see posts on social media that people are camping (near the BC forest fires), or travelling to the other end of the country to visit family. I get that everyone makes their choices, but I can’t imagine travelling ANYwhere as we are STILL in a pandemic. While people are/getting vaccinated, we are still hearing reports about case numbers going up. This past week, the BC government advised/ordered “Regional restrictions for gatherings, exercise and restaurants are in place for people who live in Kelowna, West Kelowna, Peachland, Lake Country and on Westbank First Nations lands (Central Okanagan Local Health Area)” as per the gov.bc.ca website 4 days ago due to yet another outbreak. While I would love to travel, there is no where that I need to go urgently. Yes I would like to see my 80 something mother and my family back East, but we will not be risking it to go on a plane anytime soon. I have told hubby that we shouldn’t plan any travel until 2022, which is fine for our budget as we usually alternate between travel or home renos. This Spring, I had landscaping done to improve our gardens. (and then the heat dome thing happened and scorched my new plants. *sigh) I still dream of going back to Vegas to see shows or someday (in the far far future) going on another cruise.

In regards to my disability status and travel, it is the rare time that I use this option. I have flown a lot of place in my life, in fact, I was hours old and traveled on a helicopter to another province for medical care. It wasn’t until my early 20’s that I started using my hearing loss to benefit me. I board the plane early (when they say people in 1st class or who need extra time to board) so that I can put my stuff away. 🙂 I have never been questioned about my being in the early line. Hubby has benefited from this as well. I usually pick the left side of the plane so that my right ear, the good ear, is closest to the flight crew when they ask if I want a drink. I have learned not to indicate this on my ticket though or I can’t sit in the exit row with my VERY tall husband who needs the leg room. Over the years, we sit wherever we can on the plane. As he needs the leg room, I have booked him us in separate rows to accommodate his leg room need. To be fair, we are both tall, but he is 6’7 and I am only 5’9. The background noise on the plane has been something that I had gotten used to. I rarely know what the pilot is saying, but I suppose most people don’t.

I have also learned that to use this hearing loss thing to get me better seats when we have attended FanCons. On our 10th anniversary, we went to Vegas to the 50th convention of Star Trek. It was great, but we were in the middle of a HUGE auditorium. It is was our first time at any convention and I spent a lot of time looking at screens rather than the actual person. We have since been to Supernatural Con once, and FanExpoVancouver 2x. I saw that there was an ASL group there and inquired. Hubby was allowed to jump the assigned ticket entrance because he was my “companion”. So I got to sit in the first 2 rows marked as “reserved for deaf”. I got to meet the lovely group of 4 or 5 that attended and the ASL interpreters to ask about their work. Sitting up front helped my enjoyment of the experience greatly as these where in MASSIVE ballrooms where the acoustics are even more fun (not).

Oh yes, and can’t forget the time that I was the co-chair for the national conference of my professional association. I got to wear a blue tooth type device (t-loop) for the conference. Had I known that it was an option to ask for in previous years, I would have heard/understood SOOO much more. Alas, that was my last year in my profession before I retired/burnt out so I don’t have any more conferences to attend in that vein.

As mentioned in my last post, I entered the digital age in my 20’s, but my latest aid came with yet another gizmo that I LOVE. It is called a ComPilot. It is hooked to my TV and I wear it to watch my shows. It is a T Loop; you wear it like a necklace and the sound comes through your aid. I no longer have to blast the volume, which is something that hubby does these days it seems, AND I have learned that I can mute the TV but hear the show regardless. My family has to wait for me to mute it or I can’t hear them speak to me.

Well I have to go to another medical appointment soon. This time it is just me.

Me and my disability – Part 1

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.

Personal In-Theater Closed Caption Viewing Device

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.

Lack of funding… can/will anyone help those who need it?

This morning, I have read yet another article about the lack of help, funding or childcare for our children with autism. I have reprinted it below in case it gets removed in the future (from the link).

I also posted this on a facebook group with this comment.

Saw this today on the CBC website. This article talks about one family’s struggle to find childcare specifically for their autistic children and mentions the ABA summer camp.

While I agree with Tracy‘s comments that “All child-care spaces should be inclusive. This means that all staff should know how to support all children … but in reality child-care staff are not trained to support all children,” this article also talks about the limited spaces or specialized and the fact that this mother still had to pay for daycare AND for her BI to go with her kid.

The same can be said about the ABA camp. Even though we parents pay for our children to go, it is a “hardship” (my words) to have to find and then pay for the BI/assistant to go as well. The point of finding space for childcare is that you, the parent, can breathe easy knowing that your child has a place to go that will provide them with the care and attention that they need. While my comment on this is likely a whole other tangent from the article, it is what I thought about when I read this. We have sent our kids to the ABA summer camps 1x only because while it was a great experience for my twins, the cost was prohibitive.

**********************

One thing that I wonder is that there seems to be so much out there these days. Social media is wonderful for getting the word out and spreading information about events or ideas. This is supposedly why there seems to be a prevalence of more cases of mental or physical disabilities in today’s society. The argument has been made that “it” (whatever we are talking about, in this case Autism and special needs children) has always been there, but people are now more aware then we were before due scientific advancements (medical diagnoses) and the fact that social media reaches a bigger audience.

Still it seems like there has been an explosion of cases of autism, racism (COVID racial acts against Asians, BLM), sexual harassment(#metoo), and just plain everything. Sadly, it seems that while the awareness has improved and people are able to access funding or services due to this awareness, it seems that the governments haven’t caught up to this increased demand for services for autism, or other disabilities or community needs. It is time for the services to be better funded and better accessed. It is tiring to know that something exists and yet be denied access to it. Ignorance (I didn’t know it existed) is one thing, but fighting to get basic service is another.

***************

https://www.cbc.ca/news/canada/british-columbia/surrey-mom-childcare-autism-1.6119454

Surrey mom struggles to find summer child care for son with autism

The Catroppas have to rely on extended family, paid staff for help

Michelle Gomez · CBC News · Posted: Jul 28, 2021 5:00 AM PT | Last Updated: July 28

Ashley Catroppa is facing challenges finding summer child care for her five-year-old son with autism. (CBC)

A Surrey mom is facing challenges finding summer child care for her two sons, the eldest of whom has been diagnosed with autism. 

Ashley Catroppa and her husband started looking for specialized options for their sons, aged three and five, in March. However, spaces were already filled at the Applied Behaviour Analysis (ABA) camp in Surrey, one of the few summer camps in the province specifically for children on the autism spectrum. 

After being put on a waitlist for the ABA camp, Catroppa says she had to enrol her children in a program with no additional support for children with special needs even though it worries her. 

 “I lose sleep at night all the time.” 

When camp staff said they were having difficulties with her eldest son, Talon, after the first week, Catroppa tried to find a solution. She says the B.C. Ministry of Child and Family Development suggested that the family hire a worker from ABA  to assist with Talon at his daycare. 

“So on top of paying a daycare to watch our child, we now have to pay for an ABA worker to come in.” 

Catroppa and her husband both work full time in professions where summers are busy, and taking time off is not an option. 

The Catroppas have increased the hours of a behaviour interventionist they employ to help Talon attend daycare. They also rely on support from extended family to pick Talon up early from daycare.

High demand for child care

Co-founder of the ABA camp in Surrey, Leah Mumford, said that she got the idea to start the camp when she noticed there was a gap in summer care for children with autism. 

“It is really challenging to find an appropriate space sometimes for a kid with autism to go.”

The ABA camp, which started in 2010, runs for four weeks in July with 30 spots per week. When they opened 2021 registration back in March, all 120 spots filled up within eight days. There were an additional 10 or more families on the waitlist for each week. Mumford said that kids come from all over the Lower Mainland to attend the camp. 

“I hate turning kids away because I know there aren’t a lot of good alternatives for them.” 

Catroppa and her husband both work full time in professions where summers are busy, and taking time off is not an option. (CBC)

Tracy Humphreys, founder of BCEdAccess said that it is challenging for families of children with special needs to find care, as there are not many specialty programs. 

“All child-care spaces should be inclusive. This means that all staff should know how to support all children … but in reality child-care staff are not trained to support all children,” said Humphreys. 

Mumford doesn’t believe it is a mindset of exclusion that prevents community camps from accepting children with autism, but rather a problem of capacity and funding. 

Decreased funding

Catroppa said that when funding they receive from the government to help with Talon’s needs is reduced after his sixth birthday in August, they plan to allocate their limited funds to professional help, such as occupational therapy. 

Catroppa hopes to enroll Talon in the ABA program for next summer.

What will we tell our children?

When I was a child, I grew up in a small town during the late 70’s and 80’s. It was a predominantly white/Caucasian population of Scottish and Irish descent. Growing up, it had been my aspiration to marry a McLeod, MacLean, or Mc/MacDonald, so that I would fit in better. Even though my parents lived there for 30+ years, and I was born there, we were considered to be “from away”, because we had no roots there.

It was also largely influenced by the Christian religion/church, mainly Catholic (likely due to the strong cultural links). I grew up in the church. While my family attended various denominations, they were of the Protestant vein, likely due to my parents’ Mennonite background. Church was a large part of my life. I used to say that “I was born in the Church, raised in the Church, and will likely die in the Church.” This influenced and permeated my life so much that I went into the ministry as a profession/career right out of college, and did this career for 13 years before “retiring” at the age of 36.

Over the decades of living and working in the Church, my relationship with it changed and grew in different ways. It wasn’t until my training/20’s, that my understanding changed. I would spend some time reflecting on and explaining that, to me, there is a difference between Church/church, and Religion. Our Faith is what we believe about the world and our place in it, and Church/church or Religion are just one way that we use to express that. It took a long time to come to this understanding; that I learned to separate religion/faith/church and how we function in it.

I think that a lot of people have issues or struggles with the Church because there was likely a negative experience within. Which is sad.

These days, the North American newsfeeds have been rocked by the discovery of mass graves throughout Canada of Residential Schools. Since Kelowna, there have been more discoveries, and vandalism. The latest from BC is the removal of a large cross at the top of Mount Tzouhalem, near Duncan. This has been added to the list of growing destructive acts of Church symbols, as various churches have been burned, or statues defaced. As of July 4, 2021, at least seven fires at six B.C. churches since the initial discovery of the remains of 215 children at the former Kamloops Indian Residential School. Five of those churches were completely destroyed, and RCMP are investigating the fires as suspicious.

The outrage at the death of hundreds of helpless children is understandable. For decades, the Indigenous Peoples have suffered. Reconciliation has been ongoing for the past decade but I would say that it has only been during this past year that I fully understand it. The past year, in particular, with the riots and Black Lives Matter movement, has been an eyeopener for many.

I think that while these voices have been out there for centuries, really, this past year of quarantine, pandemic, political unrest has been the final push for a lot of people, myself included.

As I stated before, my family was considered to be “from away”, which was a muted away of saying that we weren’t one of them. Over the years, I experienced racism, (was called a Nazi and a Commie) but not to the degree that the Indigenous or Black groups have. In the years that I moved away from my hometown/province, there have been more diverse groups moving into the area. The annual Canada Day party of the province was organized by members of the Indo-Canadian group that lived there. There’s even a Buddhist Monastery now.

When I was in college, one of my friends had to explain to me about what it meant to pulled over for DWB (driving while Black). I had seen allusion to this on US television shows, but had no idea how demeaning it was. No idea about this experience of racism.

So the recent church burnings as retaliation or response to the racial injustices have got me thinking about what to tell my children. Due to Reconciliation, there is now a requirement that schools teach a certain amount of Indigenous content. My childrens’ elementary school even has an Aboriginal Youth Worker, which is not something that I grew up with. My children have had difficulty with the curriculum’s inclusion of the Indigineous content as it mostly focused on Residential Schools. This year, they had to read Shin chi’s Canoe. Both of my kids freaked and could not finish it as it greatly disturbed and upset them.

In my last phone call to my mother, I asked her about when I was young, and what did she say to me about the Indigenous peoples. (The local group were the Mi’kmaw or Micmac, as I was taught to call them, who lived on a reserve on an island off PEI.) Her reply was that she didn’t really process it or understand it until after my sister and I had left home. (My mother had grown up in Winnipeg, Manitoba, known to have the “largest Aboriginal population in Canada”, and so she was influenced by what she saw or told about this group.) The fact that my mother said that she didn’t really have the words says a lot to me as well.

So while I struggle with how I understand all of this, and try to find the words to tell my children, what I have come up with so far.

Canada is a mix of different cultural groups. Some have been here for centuries, while others are new. Most of the groups are immigrants with the exception of the Indigenous Peoples, who were here long before the vast mix that you see now. Some newcomers did not or do not treat certain groups well. This is largely, imo, because they are different and it is hard and scary to understand other people.

There were a group of people who decided that the Aboriginal people and how they did things were wrong because it was different than how they, the white people did things. The white people of that time thought that they were better and understood the world better than the Aborginal people did, so the newcomers/white people decided that they needed to fix this. They built schools so that they could educate the Aborginals to the “right way”. This was mostly done by well-meaninged members of the Church.

Today, we have a different way of thinking about how people should be treated, and about how to have dialogue with them. So there are a lot of people in Canada who realize that what was done and at times is being done, is wrong, and they want to fix that. The problem is that there are so many different groups with different voices about these “wrong things” and they have different ideas about what should be done to help or fix it. Some of them are angry and destroyed the churches and other items because they are a symbol of oppression or other hurt. When people are angry, they sometimes do things that they wouldn’t normally do, like when you hit your brother/sister because you are mad.

This is what I have come up with so far and does not really scratch the surface I’m sure. The BLM and residential schools are just a small example of the bursting of the bubble in a way that created awareness to a magnitude that I think previously did not or could not have existed before. The pandemic had people locked in their homes with much time to themselves. This could have been a good thing, leading to a contemplative time of realization about what we really need ( a lot of people upsized or downsized) to get by, or want out of life. But obviously, this also had a different effect on some people, as the isolation led them to withdraw, or seek out/hunger for stimulation. We turned to our TVs and saw and heard horrible things. George Floyd, overdoses, fires, heatwaves, and the list goes on. I wonder that some tuned out as it was too much to take in. I know that I had to tune out Trump shenanigans and other things so that I wouldn’t make my family crazier than we already are.

Chosen to Serve

Of the blogs that I follow, this is today’s post from Derek M. (I wrote this post on May 13, 2021, but forgot to post.)

What If Christ Chose You?

What if it’s true?
That Christ chose you – you in particular –
picked you out of the crowd
to bear this particular fruit for him?
What if he chose you,
and put you right where you are –
exactly there, in that very spot –
to bless his world through you?
What if there is no one else, no one but you,
chosen for this sacred task?
What if God’s Son trusts you so much that
you are his only plan,
his only way to bear this fruit?
Not because he needs you, of course,
but because he chooses to need you.

It is hard to think so, isn’t it?
There must be someone else
better-suited for this.
You’re too busy,
you haven’t enough faith,
or even enough energy,
to do anything like
what you imagine he wants.

“You did not choose me, but I chose you.”
His words come back to you,
echoing still in your soul,
a persistent whisper that only you can hear,
trying to convince you all over again
that he really did choose you
to love this little piece of his world
in the unique and special way
that only you can.

But what if this is also true –
that all he really asks of you
is to believe it,
and to let him
bless this world
through you?

When I was younger and considering my vocation, I knew that I called to serve the Kingdom of God. I did not feel that I was worthy to be a preacher, nor did I want to do so. I spent 13 years in the ministry profession before I burned out and opted for a new one.

Part of the burn out was the stress that comes with the awareness that I am/was chosen to this position of service for God’s people. Along with the position of minister/leader of a flock, comes an expectation of perfection, of “more” in the eyes of those whom you meet. There is a certain perconception about what a minister is to be, how a minister is to act, talk, or be. I was/am not the person that fit the mold.

While I knew that God called many different people to serve in many forms, it was the added pressure that we put on ourselves, that others put on us, that added to my stress. I was always “on”. It was exhausting.

What if he chose you,
and put you right where you are –
exactly there, in that very spot –
to bless his world through you?
What if there is no one else, no one but you,
chosen for this sacred task?

I knew from my work as chaplain at the hospital that I was where I was supposed to be, to help certain people, in my own unique way. I also knew that many did not like how or what I did at times. This added to my depression and at times, futility. My decision to leave the vocation was based on a culmination of factors; fighting a system, pressure from my church (through the sermons), lack of support when/where I needed it, and my own health.

Now I have stepped away from the vocation of service, but know that I am still called to serve. But the audience is different. Now I am a mother to 2 special needs twins, with their own issues and personalities.

Summer Fun? Not happening

BC has announced that they will move to Step 2 of reopening. Outdoor gatherings have been increased to 50 people, indoor gatherings up to 5 people or 1 other household, and playdates. Travel within our province, indoor worship, indoor dining, and people are returning to their offices.

Hubby has been told that his office is allowing people to return but that for those who are wary, the work from home option will be permanent, meaning that he doesn’t have to go to the office.. ever. I breathe a sigh of relief at that because the commute was long and it has been nice to have him here to help out and to have meals at a semi-regular time.

So I asked him, that in light of the changes, and pending lift of restrictions (July 1st – we could travel outside of province) what does he anticipate for the coming year. What should I plan for? You know what? Nothing.

We will not be planning any trips to Vegas, or cruises, or travel to the other end of the country to see my mother. Sure I would like to see a movie… in a theatre… with “real” popcorn. But otherwise, we don’t plan anything as it is still not safe.

I can’t really remember doing much last year, or the year before either. I know that 2 summers ago, we never went to the beach once with the kids.

So we will have to see what things we can plan locally or in our backyard for the summers, aside from their sessions with their BI.

Every Child Matters

Over this past weekend, the news has exploded with the horrible news of the 215 bodies discovered in a mass grave at a former residential school in Kamloops, British Columbia.

This is the province where I live. Over the past decade, we have heard more about reconciliation and various issues related to the Indigenous Peoples in Canada. Over the past two years, my children have read about residential schools as part of their course work at school. My children, who both have autism, have been very upset by it every time these stories come up. I have been at a loss about what to say.

My own experience with Aboriginal people has been limited. I grew up near Mi’kmaq as I lived in the Atlantic region. I knew of a few persons but did not have enough knowledge of their lives aside from knowing about the fact that they lived on a reservation/island, and that I went to school with the son of a prominent leader, John Joe Sark.

I also lived in Winnipeg for a few years, where I was told was the “Aboriginal Capital of Canada”, meaning that there were the most Aboriginals in Canada living in the Winnipeg area.

Living in BC, in this time period, I have been exposed to more knowledge about various cultures that I previously did not know about or have opportunity to meet. With this discovery using ground penetrating radar, the country is more aware of the history of residential schools and their existence. I was not aware that they were still in use in any form, and was shocked to learn that the last school in BC was in operation until 1996.

Yesterday, the staff at my son’s school wore orange to show support, and my son was asked to color a heart in orange motif. When he got in the car, I asked what it was for. He said that he didn’t know. I thought it unlikely as I would think that the teacher had explained it. When I got home, I found a note from the teacher saying that she explained about the 215 bodies found at the Kamloops location and that my son had gotten upset. Later when I asked him to do his homework, I repeated the question asking if he knew what it was for and he rattled off an explanation unprompted. When I discussed this when my spouse, I said that of course our kids got upset about this, and that my response is that he should be upset about this. We should all be upset that this country allowed this to happen.

I worried about what to say to my children about this news item and how much to say as they have difficulty to process information or are very sensitive about things. In my son’s case, his OCD and anxiety means that he will ruminate on some things (from years ago even), so I wasn’t sure how much to go into it.

Why is this discovery an issue? This is something that is not openly discussed but is an ugly part of Canada’s history. Essentially, the immigrants and settlers from Europe who deigned to take over the country, decided that the persons who lived here were primative and thus inferior. The English (mostly) sought to eradicate the culture, at times under the mistaken idea that these peoples were heathen and needed to be converted to Christianity. While I am a member of the Christian Church and a member of clergy, I would say that the methods and understanding of the time were inappropriate. To try to separate children from their families; to eradicate a culture and language is wrong.

When I worked in healthcare, I met a few survivors of residential schools, but I was limited in my understanding to help them. What little these survivors could express to me because of PTSD and trauma, showed me that they were affected to their core. The 80 year old man who broke down and cried, and had little words for his experience; I will never forget this.

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