disability – That ASD Mom

Thoughts on Ableism and irony

Over the years, I have been on various executive boards or committees related to the interest of the time. For 2 decades, I was involved in my professional association (you had to be to maintain your certification), and eventually was on the executive board for the BC chapter for 4 years. Ironically, I was the secretary for most of this, meaning that I was the one to take the minutes and distribute them to the membership. Me… the clutter bug. The person who had a desk (and still does) that is so covered in stuff that you wonder how I know where anything is. Me. The hearing impaired person, who sat in LARGE rooms with horrible acoustics and took verbatim notes and then condensed them into 2 page minutes.

I am currently on a PAC (parent advisory committee) for my kid’s school, my 2nd year, and also on an advisory committee for the District PAC for Inclusion of Diverse Learners. Today, we had a new member added to our thread and so some have re-introduced themselves to the group about why we are on this particular committee. I had to ask another member on a separate chat if I was required to do this as it wasn’t clear why this person was added. My side chat had me make a comment that “I don’t attend these info sessions (that our group has put on to educate fellow parents) as the schedule or content is not for me” and then I went on to say, “Ironically, my hearing issue is part of what they are trying to address and that is what is the barrier for me.”

I also confessed that I had googled “examples of ableism” due to the whatsapp thread. Ableism seems to the current buzzword these days. It has been hard for me to wrap my head around. In reading examples, I realized 2 things… 1. I have been subject to ableism for most of my life. Specifically related to this example …

People automatically assume incompetence based on another person’s
appearance or diagnosis. How does this manifest?
A person’s opinion is dismissed because they are on the spectrum. A
wheelchair user is moved without their permission. A couple must fight to
maintain custody of their children because they have intellectual
disabilities.

I’m not on the spectrum, but I have had my opinion dismissed often for various reasons. Depending on the situation, it may have been that I haven’t processed it (aurally) well, or my thought process is a jumble (Hubby often tells me that I’m not logical. To which I have replied You just don’t understand ‘Kathylogic’.) but it is disconcerting to know that what you contribute to the conversation is dismissed because of a preconception about you based on something you cannot control.

My comment to my colleague was “I have experienced [ableism] my whole life… to me it is a fact of life and you just go around it….” By this, I mean that I have learned that the issue is either a battle to fight, or in most cases, I don’t have the energy or resources to fight for something. People are tired of being educated about what is wrong and want something to move in the “right direction” toward change.

The second thing I have realized is that I am likely guilty of ableism as well. I have a few chronically ill friends who live far from me and so I haven’t see them in years but we still converse regularly but I don’t “see” what they experience. I think if I saw how they live their life and the obstacles they face in daily life, I would get it better. I have likely said something stupid or ignored a person’s experience. [Frankly, this is why I quit my other job, as that was a key component to my work; listening to other people’s problem and to provide support. But I felt that I wasn’t getting support for my own issues and also had low energy/capacity to provide the support with the integrity that I felt the work deserved.]

As I have said in previous blog posts, COVID pandemic has made me more aware of my disability (lip reading obstacles with mask wearing, etc) and I have sought to educate myself about what I can do for me and also for my children. To that end, I have some books.. but they are dry at times. I have also joined various social media groups (via Facebook) and follow some ppl on Twitter. One person that I follow on Twitter describes themselves as “as a disabled poor woman“. In the course of my previous profession in health care, I met a variety of people who live in poverty; social housing or the street. One of my frustrations in trying to do my work of supporting people is that I was limited in what type of support I could offer. The person would say, I need help with x. I could say, I can offer A or B, to assist with x. To which I would sometimes get “I would rather get J” which has nothing to do with problem x or the individual wanted help in a specific way that was either not possible by anyone, not possible in the current system… OR.. They would get the help that was totally appropriate to get them out of the situation and it was “squandered” by some staff’s definitions.

This is what contributes to my thinking that it is possible that I have also engaged in ableism due to my limited understanding of what poverty is, what disability can do the life and needs that we have.

I have friends who are chronically ill, but are able to provide for themselves, have a strong work ethic and the person has figured out some option that works for them so that they can manage their illness (usually chronic pain) and still do work that assists with contributing to the household financially. They have a support system and family members who can support them when things are dire.

I also have a strong support system of friends and family who are able to support me should things take a turn for the worse. I have also described in past posts that I had parents who fought hard for me to function outside of my disability, to not label me or excuse my behavior because of my hearing loss.

Hubby is the one who encouraged me to quit my job/profession because I was unhappy. I have now been out of the workforce for so long that I don’t what I would go back to, however, I think that despite my hearing loss, I would still be able to get a job. It would not impede me significantly from the workforce, however, if I had to start over and get a job and live without the support of my spouse, I would fail miserably and likely fall into the poverty level. The difference from my 20’s to now, is that while I was used to scraping 10k together a year for schooling, I now have children and a mortgage to consider. I would fail spectacularly.

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This introspection comes from the fact that I’m on the committees that I am and have to have these conversations and learn new concepts. Also the pandemic smacking me in the face making me learn me coping strategies. The 3rd thing is that I have listened to a podcast, something that I usually NEVER do because there are no closed captions for that, that someone recently launched. The subject matter was intriguing and so I approached them and said I would have names of other people that they might want to chat with, and became one of them. So they sent me a list of questions that I immediately blanked on as I haven’t had to think about certain things in this way before.

Year End Reflection

Today is the last day of the year that was 2021. I will not do a review of news events, celebrity deaths, and other generic highlights that other people or news outlets are doing, but plan to think about 2021 in relation to me and my family.

2021 began with us still in a pandemic. Listening to American news as we heard about the mess that the 45th President made of the US economy, thus impacting the Canadian economy and day to day life. Hubby was still working from home, kids were still doing online classes and I was tearing my hair out trying to balance all of this. We finally had enough and removed our daughter from brick and mortar school to begin home school learnings. I hired my ABA team member to do this as I knew that I was not cut out for teaching her full-time.

I would say that we limped along through the 4th wave of the COVID-19 pandemic, the hemming and hawing of our local government about health measures; the closing and re-openings of restaurants, bars and large event gatherings such as religious services, sports and concerts; the fluctuating and backpedaling of various health edicts; the schools changing their regulations and protocols; the border restrictions; and through it all, I would say that I have been anxious and depressed at the same time. As we enter the 5th wave, and advent of Omicron, it continues.

We have not been to church since March 2020, although members of our church choir have asked if/when hubby will return. Our church has changed worship formats and in person worship locations due to renovations and seismic upgrades. I have rejoined my son’s school PAC (Parent Advisory Council) but we aren’t able to do much of the usual activities due to restrictions at the school. I have attended numerous zoom or other online meetings over the past year and had to confront my abilities and obstacles of my hearing loss. Technically, I have a “hidden disability” as it is not obvious when you look at me. I have detailed in various blog posts about my learnings/struggles with COVID life (masks and communication).

I have not seen my mother in 2 years as she lives on the other side of the country/continent and I am not comfortable to travel in an airplane any time soon. It had been my hope that when my twins turned 10, that I would take them to my home province in the summer so that my side of the family would have a mini reunion and summer vacation on the beaches where I grew up. I had hoped to show them the nooks and crannies of the small town where I lived, see my childhood home, meet some of my childhood friends – but that is not likely to happen for a while yet. It actually upsets me to see the posts on social media of the people that went to see their family members in other provinces during the summer or winter holiday seasons. While I’m sure that they are taking precautions, etc, we know that there are issues with the spread of COVID-19 and now, Omicron, as infection numbers are up globally.

I have binged more Netflix and now Amazon Prime than usual. I usually hit a slump in my reading about the beginning of summer, but this year it lasted longer than usual. I usually have a challenge on Goodreads where I set a goal of how many books I think I will read in the year, but haven’t met that one this year, not by a long shot. I had set a goal of 50 books (based on my usual trend) but have only finished 31 so far. I now have 2339 book on my “Want to Read” list, but only 967 Read, and 9 DNF (did not finish). I think the reason for this is that reading involves active processing in a different way than television watching does. And while I stream my favorite radio stations most days, there is no way I could do an audio book as that would require concentration in a different way than radio/music.

2021 has hit me in the face to really process what my hearing loss is and how it has impacted my life. To recap, I was born with a hearing loss. We don’t know how much was genetic as there is an entire set of cousins with hearing loss (maternal side) but I don’t know what type their loss is. I have discovered terminology from Reddit groups that describe me as “Mono-hearing” (meaning 1 ear). I have worn aids since the age of 4, starting in the late 70’s. Over the decades, technology has changed significantly. I heard birds for the first time when I was almost 10. My hearing loss has been described to me as “inner ear damage”, “nerve deafness” and now this “mono-hearing”. This means that a cochlear implant would not help me; that my left ear has little to no hearing (I think it is now 10%).

So over the years, I have learned to adapt. I don’t know what I don’t know. I understand some concepts in theory, like hearing “in stereo”, the “hum of the city”. A lot of this is from just living my life, or reading books. I remember a phone conversation with my best friend of 2 decades (we met when I did my Masters degree) where she told me that one day she stood on the street corner to listen to the hum of the city (as she is in Ontario while I have moved all over the Canada) and a coworker asked her what she was doing (spacing out instead of crossing the crosswalk, or lost in thought). She explained to her coworker about a recent conversation where I had told her that I didn’t really “know” what the “hum of the city” is in the way that she does, because I don’t hear what she hears, in the way that she hears. So she was consciously giving that some thought during her lunch break.

2021 has made me confront some of the things that I take granted.

I have begun to follow things on Reddit forums and twitter more and more these days, related to the state of our provincial ups and downs (COVID and policy related) as well following local activist groups so that I can keep up to date about issues related to my children and their needs/rights. Our province has decided to change the funding model used to assist my children assess services for their Autism, but has been sparse with details (amounts, who will regulate/distribute funding as gatekeeper, and what type of training these persons will have) about how this will work. Most parents are upset as the structure that most of us have researched and worked hard to set up will be ripped apart by the changes. My town’s mayor has made some interesting/not-so-popular choices re: budgeting and infrastructure.

One of the twitter users that I follow is a vocal member of the disabled community who talks about their struggles to access services as a physically disabled woman living in social housing. I have been made aware of issues that I have luckily not had to face (as my disability is different, and I have a different economic status) but it is good to hear these voices so that I expand my thinking but also know that some of what I have experienced in my life is not okay.

I remember when I was graduating from my Masters program at the age of 27, (I did it from age 23-27) I complained to my mother about how hard it was to find a job in my field. My mother’s reply was “well, you have to remember you have 4 things working against you; 1. you are young. 2. you are in ministry where the jobs are slim and the denomination has issues 3. you have a hearing loss and 4. you are a woman.” I remember going “oh yeah, I forgot the part about prejudice against women in ministry”. I knew that I had a quirky way of looking at the world so my sermons/perspectives were often met with skepticism by mainstream players in the field, but I had forgotten about the impact that some the obvious could have. My hearing loss helped and hindered my work. My being a woman helped and hindered my work. My being young and having this as my first career also didn’t help. In the conversation with my mother, my hearing loss was inconsequential until she reminded me. A lot of my friends have told me that they forget about my hearing loss, until I remind of the car analogy, “pretend I’m driving a car and you are the passenger” when you talk to me (to determine my good ear) if you can’t face me.

2021 and the COVID communication issues have reignited my ire about the fact that I’m disabled but the government denies me the ability to get the disability tax credit because I don’t fit the criteria. I don’t “need” the DTC, but as I don’t really know how or if I can return to the workforce due to my kids and my hearing loss, it would be good to know that I would have “something” especially if I am entitled to it.

This past week, it was announced that there will be delayed returns to school across our province (BC). We are reverted back to one of the phases from 2020, allowing children of essential workers and those with special needs (gov’t wording was ‘essential needs’) but did not clarify what the second group is. This is reactionary due to the soaring numbers post-holiday festivities. Omicron is now raging and persons who have been tripled vaccinated have been infected. Public sentiment is that there is no safety from this regardless of the measures that we take; anger at those who feel the need to exercise their freedom of self-determination and opt not to get vaccinated due to their beliefs that range from COVID being a hoax, paranoia re: governmental control, etc. (I have had to instruct my hubby not to engage with certain members on his social media feed who hold these opinions as the interactions end up creating more ire on both sides of the conversation/debate.)

In the end, we have decided that the risk of Omicron infection is too great. Our children are FINALLY booked for their COVID vaccinations in January, but we will delay the return to public school forum and continue with small bubble/home school options for both in the weeks to come.

I hope that 2022 gets better than the past 2 years. I’m sure that this is nothing compared with what our parents/grandparents dealt with rationing, survived wars, and various economic ups and downs, but it is still hard at times.

The Struggles Continue

The struggles continue. We have started them on meds for ADHD and now I have to find some form that both will take for other meds; melatonin and iron. Iron is for the girl as she doesn’t eat meat (or fruit, or veggies) and the doc worries that she may be anemic. Not a good thing for anyone, but especially with her heart condition.

Melatonin is for both, but mostly for the boy who has anxiety issues and is back out of bed at least 3x a week. He will come down and say that he is scared and the reasons range from a video he saw, to worrying about death and dying (what will happen to him if I die, worrying about the aging grandparents…) and the new one is worrying about his sister as she doesn’t finish all of her food some days.

*Sigh. Let mommy worry about that, and you worry about getting enough sleep so that you aren’t grumpy or sleepy at school tomorrow … is usually my response.

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Our province is also going through a period of rain storms that have caused flooding in the main farming area of our province. Many have been forced from their homes and need to rebuild only to have more rains come. Stores are empty in areas due to stocking and access issues. Gas is rationed. Borders issues with the States. The list goes on.

In the midst of this, I have actually put up the Christmas decor, which is a significant feat for me as I usually don’t like it, don’t want anything to do with it, … I tolerate it and the commercialization of the season. I guess this year I needed something to look for , to hope with. Despite my child’s greed about presents, we have determined that our kids have too much stuff and there will not be an abundance of gifts this year from us or Santa. We figure there is enough from grandparents, etc to add to the piles.

Hubby has asked if he needs to buy something for me or if he “has already done this” *wink (meaning have I bought something and told him that was what he got me). I told him, you got me a new TV so there is that. I was getting annoyed with squinting to read the subtitles from the other end of the room, so we got a bigger screen and it is a smart TV, so it now has only 1 remote instead of 2, and more apps on the TV whereas we had the Firestick (amazon) in the basement where I hardly went. I have discovered shows that I watched in the 80s or have wanted to see but didn’t have the time or platform for it.

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There has also been protests at the BC legislature about changes to the funding for special needs. Currently most autism funding is through the BC gov’t from the Autism Funding Unit. There was an announcement about funding changes to create hubs instead of the current direct funding we currently have. AFU should be increased in amount has been a long said critique. Instead, BC has decided that in order to provide access to services for the various disabilities, diagnosed or otherwise, they will pool it all into hubs. This model has been used in Ontario and has been criticized for increasing wait times to gain access to services. My issue is that information is vague; no budget listed, no information about WHO will determine WHAT services are to be provided, or their credentials to make this determination. In trying to help the masses, I worry that they will hurt more than help. So to that end there have been protests and one will be on December 3, the International Day of Persons with Disabilities. I’m torn. I know that I should go. I also have been thinking that I should join the letter writing campaign (to my MLA) about this, but frankly I have little energy for all of this. I’m trying to put my finger on it, but it is reminding me of when I was working in healthcare and they talked about the demoralization of the staff. I think that is it, or the closest thing that I can think of to describe this feeling. The fact that I have to fight so hard for basic access to things that have been deemed essential or fact. It takes so much energy to advocate for things, and it is so far out of my comfort zone that I worry that I will make a horrible faux pas and thus screw my chances (and my twins’) for getting what services are needed.

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:

Do a good a job at whatever you commit to. Don’t commit if you aren’t going to do it.
Don’t quit just because you don’t like something.
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.)
Don’t tell people about your money.
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.
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. 😉