Season 1, Episode 13: Mind the Gaps
with Shantel Sherwood
Welcome to “The Gravity Well,” where we break down complex ideas into manageable discussions. Our mission is to foster collaboration and address societal dilemmas through open conversation. In this episode you hear from guest, Shantel Sherwood, co-founder of Hold My Hand Alberta, advocates for children with disabilities, focusing on education and interconnected support systems.
You hear us explore the challenges faced by children with disabilities, the impact of late diagnoses, and the need for early interventions. Shantel shares her personal experiences and the systemic issues within education and healthcare. We discuss the importance of inclusive and accessible education systems, drawing inspiration from global models like Finland’s.
The conversation highlights the need for a holistic approach to education, considering individual learning styles and the broader societal impact. With emphasis on the importance of community, family support, and addressing trauma. The discussion also touches on the systemic barriers faced by marginalized communities and the need for equitable solutions.
Join us as we delve into these critical issues and explore ways to create a more inclusive and supportive society for all.
Welcome and Introductions with Shantel Sherwood
Alex:
Welcome to The Gravity Well, where we break down heavy ideas into small buckets anyone can handle. Our mission is simple to set aside our differences and collaborate with others through a conversation and process. Together we can face our dilemmas and make the world better for all.
Jenny:
In the spirit of reconciliation, we acknowledge we are in Blackfoot Treaty seven territory and Metis districts five and six lands. We take reconciliation by seeking the wisdom of elders and individuals who aim to restore water, air, land, life, and community. A healthy living relationship with our homeland and each other is our guide.
Today I’m thrilled to have my friend Shantel on with us. I met Shantel last year when I was running in the election. Shantel is an advocate, how would you describe it, Shantel?
Shantel:
I would say children with disabilities. I’m one of the co-founders of Hold My Hand, Alberta. We represent children with disabilities, primarily with education, but we often go into other avenues as well because those ministries do cross each other.
Jenny:
Yes, everything is interconnected. I’ll just do a bit of reflection on what we’ve been up to this round for you and us. Our first round we ran through January and February, asked “Why are we hosting this conversation?” What’s the problem? What does it look like? How do we describe it? Now it’s “Who are the players?” What is the system we’re working in and who are the players within that system? I’ve got this rock model that we’ve been working through and it helps me understand what the power structure is. We’ve discovered that talking about names, particular people. For example, if we were to talk about the liberal party or conservative party, rather than just talking about governments in general. We’re trying to use general terms when we’re describing “who in the zoo”.
That’s what these couple of months are, we’re trying to break down this model. We’re talking to people like you, people like us. Alex and I feel like at various times in our lives we’ve fallen through the cracks. One of the times I fell through the cracks was recently when I worked in the oil and gas industry.
In 2022, I was working at one of the major oil companies and I did a presentation at the GeoConvention and said that I felt a certain sense of responsibility for the mess I was seeing that we were making. I could see a way for us to do it better. I wanted to help educate geoscientists, like myself, to understand this challenge and present it. That was on the summer solstice of 2022. The next day I was brought into a meeting room with four executives and let go.
I was given a choice. I could go with the flow or I could say I’m not participating in this and leave. I pleaded constructive dismissal and left. The reason why I tell that story is because that’s what set me on the journey to meet you.
The first thing I did when I left was meet with one of our mutual friends, Amy Shantz, who had been there with me at that moment when this happened. She had invited me to an Alberta Party event and said, “Would you consider running?” And I thought, “Oh God, I’ve never thought about running.” But what I discovered while I was in the industry was that the problems I was seeing were bigger than the industry. It includes the government, it includes the regulator, and “oh, my god”, it includes stakeholders. Holy smokes, this includes everyone. It was a bigger problem than industry.
I was cleaning my house and I decided to find a podcast to listen to, and I landed on Be Antiracist with Ibram X. Kindi The Zero-Sum Myth: We’re Divided, We’re Conquered. I thought, “Well, this seems interesting.” I turned on the first episode, he was speaking with the author of The Sum of Us, Heather McGee. The book was all about inequity and how she was presenting to the leaders in the United States, federal leaders, what the gaps were and how these policies designed for the few people at the top were hurting everyone, even including the people at the top. She kept showing them evidence about how inequity thinking was hurting them and the conclusion of her book was the only way this is going to change as if it changes through the government.
I thought, “Okay, well I guess I’m running.” Anyway, that’s a long way around to how I met Shantel because I went in with the framing of not only do I need to go into government, but I need to change government. I kept seeking out people like Shantel. What are we missing? Where are the gaps that we are not addressing? This is what Shantel, in a lot of ways, is leading. My words, Shantel, I’m sure you could say it better than me. That’s my introduction. I’m going to let Alex offer some reflections and you as well, Shantel, and then I’ll give us a little exercise to run through afterwards. Sounds good.
Alex:
Hi Shantel. Thank you, Jenny, first off, for explaining your lived experience, mine is different. I was a child who was diagnosed with ADHD and Asperger’s at the age of 12, and I was put on amphetamines so that I could read books quicker, continue my grades, and do what was required of me, so to speak. But the long-term effects of that amphetamine usage by the time I was 18, produced a whole host of other problems. It didn’t stop me from working and being involved in many different industries ranging from high-rise security to intelligence, to construction, to working in kitchens, studying at the Alberta College of Art and Design, and working as an independent artist.
When I look at the wheel that Jenny has presented in the chat, there are three basic ideas. Where I was born, being white, and a generic person. The fact that I wasn’t willing to learn in the way that the education system required me to learn resulted in them saying, “Well, now take this and then conform.” So I did. I adapted throughout my life and I’ve been quite the survivor. I think in terms of the work that you do, it would be really interesting to have a conversation, especially because you advocate for other children who are going through not only ADHD but autism, various levels of the spectrum, gender identity issues and combinations therein. I’d love to take this opportunity not only to work from my experience and have this conversation but learn from your experiences in trying to navigate the complexities of these matters. With that, I’ll hand the microphone to you and open the floor.
Shantel:
Wow, you two have quite the lived experience. I am reflecting right now as we speak because like I said before as we were chatting, I do like to fly off the cuff a little. I do appreciate both of your lived experiences because it does tell a story about, “why we do what we do”. What you were just saying, Alexander, about being the kid that was just given these medications. I am not anti-medication because in the right stages, in the right places, they can be helpful. They can be helpful like a crutch or a cast or anything. It’s a device. They can’t be the end all be all, which is where a therapist and all of that come into play. It’s a system. But beyond that, I am also autistic, ADHD. One of the things I found as a late diagnosis is that I was thriving and surviving in a system not designed for me and thriving and surviving at the very bare minimum level.
It was because I could, as white females, we don’t have it easy in every aspect, but I don’t have it harder than some. I could get away with a little bit. People said, “You look cute, you’re not…” Because there’s this idea that if I tell people I’m autistic, the first thing they say is, “You don’t look autistic.” That being said, I could pass. My masking worked to some extent. Did I have breakdowns at home and other issues? Absolutely. But I could function, but it was functioning, and that is not how we should live.
We look at these children and we look at what Jenny was talking about and how she was finding certain things impacted other things and impacted other things. I find the same thing with disabilities, it is largely intersectional and because it plays such a huge role in so many areas. I could advocate endlessly, whether it’s healthcare, education, or social services. We could go all day in different ministries and different levels of government, but the reality is everything impacts each other.
On a personal level, I have a sibling who has addiction problems, is also non-diagnosed, autistic and ends up incarcerated. All of these things might’ve been avoidable had he just had support. All of these things led me and a few others that I work with two other moms to hold my hand. Alberta, we created that based on the fact that we understood that an education system right now is like a size six shoe, and if you’re that size six shoe, absolutely fantastic. You’re awesome, you’re good. Why we’ve designed it that way, there are so many different reasons that we could look at, but that’s not what matters. It’s the kids that are the six and a half and the seven and those outliers, they’re still doing okay. Their mental health probably isn’t as impacted as those who are saying eight or a nine or all those who are just kind of flopping around her and shoes that are way too tight.
Alex:
[My mom] would always say to me, just think of the solar system. She’d say, “Earth is a three. Everybody who is going Mars a little further out there. Then you have the asteroid field, which is the barrier that separates you from the normative society. And then right off the bat, you got Jupiter until you’re at Pluto. Pluto is not a planet and has a completely elliptical orbit that goes in the same direction of every other planet within the solar system. We had kind of a safe word when I was younger. If I was freaking out about something, she would just say, you’re going to Pluto.
Shantel:
In our house. It’s snowball when a snowball hits the snow and it starts rolling down and it’s just becoming bigger and out of control, that is our house. Everybody in my house is neurodivergent. So if I can run a house with five people with five different divergences happening and…
Alex:
Still keep your sanity, I’d say You deserve a high five.
Shantel:
We’re getting there. No, we’re doing good. We roll with it. We don’t let it snowball at a control. The moment we just decided that this is and the moment I said I’m autistic, and it was that defining moment where my son was diagnosed and then it started to hit that, hold on. Maybe getting that diagnosis was an opportunity for me to tell my son, it’s okay, I did okay. You’ll be okay. If we were to say government as a whole, no matter which everything I do is nonpartisan, if schools just said, “It’s okay”, if boards just said, “It’s cool, we’re going to teach you the way you learn.”
Alex:
And if we just said to our government what they’re doing is not ok. It’s not okay. There’s a difference between being an empathic spectrum-based sort of neurodivergent person and an observant person and what pathological narcissists are doing within her governing bodies.
Shantel:
True. If we were saying to these young adults, it’s okay. And we started reinvesting in these kids. I grew up in a conservative background. I am from rural Alberta and I was told long-term investments, you’ve got to think 10 years ahead. And I’m not looking at a government that doesn’t think more than four years ahead, but I grew up on that 10-years ahead scale. When I look at these children, I think they’re an investment. We’re talking about the mental health crisis, we are talking about the addiction crisis, we are talking about all these things, not realising that if we just started from the beginning we could save so many. And that’s actually how Jenny and I met, we were having this very discussion on starting early interventions, getting these two and three-year-old’s and helping their families.
Letting Go of Ego, Helping All Kids Thrive
Alex:
Find out how they learn, make an effort to try and kind of understand. There’s a great story. I can’t remember the dancer’s name, but she was an ADHD kid. She couldn’t sit at a desk and just regurgitate and memorise information. She was much too tactile. And she had one teacher when she was about eight who just noticed like, Hey, let’s put her in dance class and see what she does. So she went into dance class and she just loved it. And then she couldn’t stop dancing because she was autistic. So once she found something to focus on being the kinesthetic learner that she was, she became a Russian champion at 17 years old.
Shantel:
Absolutely.
Alex:
It depends on learning styles. And the problem I think just to throw an idea out there is that our curriculum is unable to adapt and observe in real-time the diversities, the divergences, the differences in perspective, calisthenic versus literal versus auditory versus all these different learning styles. It’s not able to adapt to those realities. Maybe looking at our curriculum differently we should approach that option.
Shantel:
That would be the key.
Jenny:
That’s her specialty. Thank you, Alex, that was amazing. Please Shantel offer Alex some of your work and the opportunities that you’ve helped me understand in terms of how the curriculum can change. Excuse me.
Shantel:
I think one of the first things we need to do in education is let go of ego. One thing that kills our families all the time is hearing, “Oh, Alberta has a world-class education” and the rest of us are sitting there banging our heads against the wall saying, “For who?” We know standardised testing is not the best tool for these kids. We know that there are things that can test these kids on their way of learning. My son has had two psychoeducational evaluations which told us that he is in the 99th percentile for visual working memory. Fantastic. I know his memory skills are high. He’s in the 15th percentile for processing, so take it a little slower. He’s not slow, you just need to take a little time, but he’s going to memorise everything. And once he memorises it, he is now an Irish step dance champion because his dance instructor took the time and now he’s dancing, he’s doing all the things.
We were able to slow it down. Those are the kinds of things. We learned that those kinds of tests are available. The costs can be somewhat similar to standardised testing. Yes, they do need psych help with these tests, but I have to say there are probably easier ways to do this because this is where Jenny and I also met. We got to go back to Finland and we took a little trip to Finland and we learned that they were having a lot of problems with their education. They were trying all these things and it wasn’t working, wasn’t working. And they were like, “You know what. we have to start from the ground.” They flipped their education system. Their teachers now have to have master’s, I believe just to teach. You can’t just have a four-year, you have to have the full shebang, but you are paid for your education. Children are tested much earlier for learning disabilities and such and given programs right away, kids are put into programs that fit their style of learning. So instead of it being based on grade one and kindergarten and this and this, they’re based on your A level for English. So you’re going to be with these kids and you might have a variant age around there like 6, 7, 8, even actually it would be 7, 8, 9. They don’t start reading at age seven because then it’s developmentally appropriate, they find.
Alex:
Six was always afraid of seven because 7, 8, 9.
Shantel:
And again, they’re not perfect. I’m not going to shout that Finland’s perfect. I’m trying so hard not to laugh right now because that was such a mom joke in this house. I’m just waiting for a child to pop in the room saying, “I heard that.” It’s not perfect. No system is perfect. But I do know that it has worked for many and I know that it has worked well. I have to look at Alberta and say, “There are parts of these education systems like Finland. Many others are working well. Why can we not take those parts that we know work well and transition it here and make it our own?”
Alex:
I dunno the answer to that. No. We need to just take examples from every country that’s doing things efficiently and effectively. We can provide our students with tablets and then we took two years of their lived experience away from them and they could only educate themselves on tablets. Is it possible that we can say, “Hey, wait for a second, maybe they don’t need to go to the building other than just to gather there and then go to the Glenbow Museum or go on field trips so that they could learn in the real world about how a tree grows?” Look why pine cones do their thing. Why fire is necessary for pine cones to be able to seed and produce the forest. And they have their tablets with them. Can we maybe rethink how the 20th-century box store educational system works? Now that we have the technology and we’ve proven that if it’s incorporated responsibly, it could work.
Shantel:
When I hear that, I hear a lot of Waldorf-style teaching, which is a whole different, it is very outdoors and it’s great. We joke about this a lot. My youngest would do very well with Waldorf styles. He would be the kid that’s like, I got to explore my other kiddo needs that desk. He needs that structure. And this is where we come to those kids who learn differently, right? I’ve got two polar opposite kids. They couldn’t be more opposite. One has brown hair and brown eyes and the other one has blonde hair and blue eyes. I don’t know how they’re both Mine. One is very artistic. Jenny has purchased one of his art pieces and the other one would rather die than do anything artistic.
Alex:
That’s brilliant though. Just circle back a little bit. If there’s a proper assessment from the early onset, like you were mentioning. So that you can see which kid wants a desk and wants that structure and which kid needs to dance, there’s room for everyone. And there’s a Greek system that’s been around for thousands of years now. Get an assessment early on so they go into an apprenticeship by the time they get to the third curriculum, in high school.
Shantel:
For so many kids that would work. My daughter just graduated high school a couple of years ago, so she graduated under Covid. She was now in school to be teaching, but she was in her school’s stem program. She was the first to try a lot of things for their program and she was the first girl to go out on an internship for their, and she was on a debate scholarship and in all these different things and she was so on top of it. And then she burnt out because she has ADHD and none of us knew it, poor kid. However, she could do everything, anything, try it all once.
But she had programs. She’s the kid that the school system is built for. She is a hundred per cent the kid that this school system was built for because she is the, “I’ll try it.” She will try it so much and mask it so much. She will burn herself out and cry and all that when she comes home, but a straight A’s all the way. We’ve got these kids that do so well on the system and my daughter was the one that they would base it off of. Even if you had asked me when my daughter was in junior high while her brothers were babies if I thought the system was broken, I would have said, “She’s doing fine, the system works” because we thought she was just being a teenager when she was upset. You don’t know until, and I get that a lot of parents who could listen to this or a lot of teachers can think, especially in their first few years, this is the system. The system works because looks at these kids who do well.
Jenny:
Yeah.
Shantel:
A parent who has a kid who did well and then two kids who are not okay. You learn the system is broken pretty quickly.
The Wheel Of Privilege
Jenny:
That’s the opportunity that I see in this discussion, Shantel. I love that you two touched on the direction [of where we’re headed]. What I have here is an exercise for us, which I think will help spark the conversation around, well, what do we do about these gaps? I’m just going to show the image so you can see what I’m talking about here. First, it’s this wheel of privilege. It was drafted by Sylvia Duckworth and adapted for this ccrweb.ca. This came from Amy, I got this way back.
Shantel:
Yay, Amy.
Jenny:
Shout out to Amy twice. To me what this helps me understand is when I look at this circle. Let me just describe it for those who can’t see it potentially. It’s got a list of things on the outside, which I’ll get to in a second. And it’s showing that power is in the center of this circle.
I look at people falling through the cracks. I’m looking at this from the top down and thinking about how people fall through the cracks in our system. And so that’s what I think this image tells us. So I’ll just walk through the outside and then you guys can offer your comments after I’m done here. So the ways, for example, they’ve got sexuality and in the center they have heterosexual. And then of course on the outside is lesbian or pansexual or asexual. This is the dynamic, the quote-unquote norm is to be heterosexual so you feel safe and potentially there’s a power in that. That’s just one example. I’ll just walk through some of the other ones. Being able-bodied versus being disabled, having a formal education and what level? So if you have an elementary school education versus post-secondary being a more powerful skin colour being dark-skinned versus white-skinned and citizenship. Being undocumented versus a citizen’s gender. Being non-binary versus cisgender.
Being in the power center there, speaking English gives us power. And Shantel, you’ve spoken about this in terms of intersectionality as well, but anyway, wealth being rich gets you a lot more opportunities for your kids, right? Owning your home. A lot less stress in terms of making sure those basic needs are met. Body size, image, and how it plays into the attention we get. Finally, mental health, if you’re feeling you’re of robust mind versus vulnerable, this is the power structure. I know Alex has already highlighted, but there are a couple of things that he thinks are missing. I think I’ve fallen through the cracks. I would say I’m probably on the spectrum a little bit. I’ve always thought differently. I didn’t feel like there was a space that I naturally fell in, so I just kind of did my own thing, right? And was fortunately able to be successful, I’m not ignorant of the other opportunities that this wheel affords me, right? I had a safe family and I’ve been able-bodied, I’m white, I’m a woman and I’m heterosexual. See the opportunities for this power structure to be flattened. How do we look at this? Shantel we just get to play here, but which areas…
Alex:
How about mental and psychological health, though? When you lost your job or you lost the election, I’m sure you suffered that way.
Jenny:
Oh, Thank you.
Alex:
That’s huge. Understandably.
Jenny:
Not feeling welcome [is what it felt like] to me. You were talking about community, Alex, I’ve felt my beliefs, and my desire to do well by others haven’t been values that have been fostered.
I want to use an example of an opportunity. As you said, Shantel, you and I are so aligned in this concept that if you just set people up for success, holy man, we have no idea how much number one opportunity that can afford them. And then also the amount of costs that would be saved in our system by just stopping the bleeding early on, plugging that hole in the boat and letting it recover. I’m going to stop and let you guys offer some thoughts on this now. Thanks, Shantel.
Shantel:
There’s so much. It immediately made me think of how often I have to tell people that autism, for instance, isn’t linear. It is a spectrum. And the reason we say that is because it can look so different to so many people depending on what impacts you. When we talk about autism not being severe. Some of these terms can be painful because they don’t always define the person. Sometimes you can’t see what is bothering them, what impacts them and all of those things. When we say severely impacted language, severely impacted this and that, and I’m watching this or I’m looking at this wheel right now and I’m like, this is very similar in the way that this is what impacts a person. All of these things.
Alex:
It’s funny though. Did you ever find, quick question, sorry to interject, but do you ever find that the person who is saying that the autistic child has severe impact, language deficit or severe impact is the one who is severely impacted with the fact that the child will just tell them the unadulterated truth? The diagnosis is on the physician, not the child.
Shantel:
It does depend on the physician, their expectations can be interesting, but that’s where we could talk about the fact that boys are more likely to get diagnosed before girls are. The DSM was tested on men. A lot of the mental health problems that we see, autism, and ADHD, all that impact women just as much as it does men. Yet we are so far behind on being diagnosed and that is just one piece of the puzzle. I look at this and I talk to so many families and I’m always careful when I mention them because I don’t have their lived experience at all, but I do consider them when my advocacy is there. And one of the reasons, and I quote this all the time, is that I try to remember and I’m looking around the table, I’m trying to remember who isn’t at the table right now.
Well, who isn’t at the table? And if there is for some reason I don’t have that person at the table, have I made sure to reach out to somebody who could represent them, who would represent them that I could maybe get some information from and learn from so that I can better help them because I am a white mom representing a large community of children with disabilities and all of these kids are not white. So how do I learn more? I learned about Jordan’s principle and how messed up that is, and that’s a whole topic for another day, but
Alex:
It’s just my view. I don’t want to sound controversial, but they’re kids, black, white, doesn’t matter. How are we going to help him? That’s just kind of how I feel. It may not be the way that the world is commanding that it should be, but it’s like if there’s a kid who needs help, I’m going to help him or her or in reserve. It doesn’t matter. It’s a kid that needs help.
Shantel:
It really should be that way. When it comes to education, FSCD is a Family Support for Children with Disabilities. I’m careful about using acronyms or PUF, which is Program Unit Funding. When we’re looking at these programs, a lot of times they do unfortunately treat the child according to the parent. If you are a parent, an outwardly autistic, like me, trust me when I say, they talk to you differently. They do because when I didn’t say it and when I didn’t tell anybody, the way I was spoken changed quite a bit. Now even though I’ve won an award, I have done all these things with my work. Being autistic has still impacted who I am and how I’m treated by these educators, by healthcare professionals, and by all of that. Now imagine if I had that, plus English is not my first language.
My husband, for instance, is from Romania. English was not his first language. When you are somebody who is learning the language, I’ve recently helped a couple of families from Mexico and they’re still learning. They’ve got to learn our system, they’re learning our language, they’re learning so many things and now they’ve got to somehow manage FSCD, which is a puzzle in itself. It is a really hard system to figure out. The minute your child is diagnosed, you are supposed to apply for it, and you’re supposed to get all these things, and it can take up to a year, and it’s confusing to know why they’re not talking to you and why you’re not hearing back because the healthcare professionals say, “You should hear back right away. Everything will be hunky-dory” but FSCD is run by social services.
It’s an entirely different ministry. Those doctors don’t know what’s happening half the time. And then you’re also told that you’ve got to get PUF if you’ve got a little one. PUF is for younger-age support. It’s usually daycare, kindergarten, age, it’s three to five. These parents are trying to advocate through the system and understand the system and what they’re supposed to apply for. And if English isn’t your first language, you can add so many different, varying layers to this as you’ve seen with your chart there. It’s going to make every step of this harder. As Alexander said, it should just be “Here’s the child. The child has this diagnosis, it’s in the papers, here you go.” And it should be that. If it were, we would save so many children. But then we have to also add in the fact that so many kids miss out on early interventions because right now it’s about a one-and-a-half, two-year wait list just to get these kids to be seen.
We don’t test for dyslexia or anything until they’re in grade three. That’s a standard. We’ve got all of these layers of things that are stopping kids from getting a diagnosis and then they miss the window for early interventions. Now we’ve got some trauma because these kids now exist in a world that’s not designed for them and they don’t understand it. Maybe the parents are neurodivergent themselves and not diagnosed. We’ve got some people who are dysregulated raising dysregulated kids, and now we’re compounding some traumas. Then we’re sending them into school and the school is loud and it is overwhelming, and these kids act out and guess what? Now we’ve got a behaviour code. Now these kids are behaviour kids. It’s a snowball in this case, one that you [don’t] have control over because you didn’t get an early diagnosis and now this kid has low self-esteem. Now this kid thinks people hate them. Now this kid thinks they’re a bad kid.
Alex:
Question, if one of the aspects that you were just speaking about is that parents, potentially undiagnosed, can’t understand why their children are acting out because their children are undiagnosed, and the undiagnosed parents are assuming that their children are behaving pathologically and the children assume that the parents are behaving pathologically and no one’s made a diagnosis. And then whenever professionals, the ones that are available at least try to intercede, they assume that everybody’s pathological and then they misdiagnose rather than getting to the crux of the issue, which is different communication styles. Is that possible?
Shantel:
Yeah, that’s a huge probability. In my house, there are five of us and every one of us has ADHD, which is phenomenal. None of us have the same combos, which is fun. My daughter and husband are both impulsive, but one is very impulsive and the other one is very loud, impulsive. My youngest is wild and impulsive. I’m both introverted and not impulsive at all. I would not do anything impulsive. I overthink everything.
Alex:
So you’re structured.
Shantel:
Yeah, very. I focus more on the autistic stuff because my ADHD is there, but I also have other physical stuff. I have pots and other things. Brain fog is usually where I get hit, and so I never know what’s come first. For me, I’m chasing a chicken or egg thing here. Thanks to the late diagnosis. And there’s also that trauma component, which I think we often don’t talk about with late diagnosis, which is why we have so many mental health problems that that late diagnosis leaves trauma. Trauma can mimic autism and ADHD. When you’re a late diagnosis, you can often get misdiagnosed as well because they’ll say, “Well, it could be trauma, it could be ADHD, it could be this.” Add the other small component of, “Hey, you will not get life insurance if you get diagnosed.”
Jenny:
We spoke about this, Alex. Shantel explained to me that a lot of parents will be hesitant to get their kids diagnosed because the moment they do, then they’re on a potential insurance issue for the rest of their lives. They could be labelled in terms of getting health insurance or long-term disability, things like that because suddenly they require medication or they require things to their pre-existing things. There’s a whole other layer to this.
Alex:
That’s interesting. Why is that? You’d think that the insurance would cover more than
Shantel:
Because we’re all impulsive.
Alex:
Thanks to advertising.
Jenny:
We’re assuming we’re all going to make crazy decisions. Is that what you mean?
Shantel:
We’re going to make crazy decisions, poor decisions, impulsive decisions, mental health, suicide. There’s just so many factors. My daughter calls it the no-fly list. She had the option to get her stuff put on paper just as I did, and she did not want to because she’s like, what if I want to teach not in Canada, I don’t like the education system. What if I want to leave? And she’s like, so I don’t want the diagnosis on paper because then I’m on this no-fly. I can’t move anywhere because some countries won’t take you based on the diagnosis.
Jenny:
That’s wild. Yeah, all of these layers.
Alex:
I want to look into that. I didn’t know that.
Jenny:
Yeah. Alex, I’m curious, you had some thoughts before this conversation about this wheel and what might be missing. We can move away from this, but I just was curious if you had some things. I thought you had some important things you wanted to add to this.
Alex:
Well, just from my own lived experience, I had three things that I don’t see on the wheel, community, family support, and friends. I had people around who cared about me, who picked me up when I was down and gave me the time and space to overcome my addictions and get off those medications that I was prescribed just because I didn’t perceive the world the way that it wanted me to. And without those three things, community, family, and support, it’s extremely unlikely that someone’s going to be able to survive that. What’s interesting is what’s missing on the wheel.
Shantel:
I think you’re right. Safety is a huge piece of that too because we talk about community and you were talking about that now, did you grow up in a safe home?
Alex:
I did.
Shantel:
Mine was 50-50.
Alex:
In my teen years. There’s family divorce and blah, blah, blah. There were challenges, but overall it was pretty safe. All things considered. I can just look around at the rest of the world and be like, I always had fresh drinking water, even if it was Kraft Dinner, there was something to eat.
Shantel:
I think food on the table, I think poverty, I think all of that plays such a big role. Again, I go back to trauma too because we have so many refugees who are coming to Canada right now who have trauma compounded on top of everything else. And sometimes people have trauma in education, and trauma in healthcare, so reaching out for a diagnosis becomes very complicated for them because it means they have to ask for help from people who may have traumatized them. I’ve heard so many things over the years for reasons people don’t want to advocate in schools because they’re scared of principals and I’m like, you’re a grown adult, but they are still terrified because of a childhood experience.
Jenny:
It’s so true. I know I read in a Brene Brown book a while ago how much teachers can influence, they can change the trajectory of a child’s life. I remember having a grade six teacher who just decided right from the get-go that she didn’t like me and that was, I still think of that year all the time. I think of the ways that she wouldn’t allow me to, and that’s just one school year, let alone more. And yeah, to your point, the fact that food isn’t on here and safety like you’re saying,
Alex:
There’s a community, right?
Jenny:
Community is important.
Shantel:
How was your family dynamic? I had a brother who was permanently ill my whole life growing up as a glass child with disabilities, of course, I wasn’t going to get seen. Yeah, here’s Shantel and she’s struggling, but your brother almost died out of the eight heart surgeries he had, so we’re going to prioritize that his aorta is grafted to his stomach. He’s a whole story, too.
Alex:
That’s a good story. I want to hear that story some other time. For sure.
Shantel:
His aorta is grafted to his stomach from birth. I have witnessed things that no child should witness and it created traumas on its own. And seeing family dynamics change because you have a terminally ill child in the house. There are so many things. Health is your health, your food, your shelter, the basics. Are those covered and are those good? We’re not talking. Are they the bare necessities? Is it where you feel safe? Is your home where you feel safe? It’s great that you have a roof over your head. Do you feel safe with that roof? We
Alex:
We didn’t all the time after my parents got divorced, my mom married a guy who was a military man and an honourable man who always stuck with it, always provided, but he shot straight nose, and hit its target. Noah made sure that you were falling in line and I wasn’t used to that. Over my life, I’ve become very good friends with him and I’ve taken the disciplinary lessons that he was trying to instill because for him it was common sense, but for us, a bunch of wild teenagers thought, “This ain’t common sense. You’re not my dad.” We didn’t make it easy on him either. I’m sure he has his traumas from our resistance to his disciplines and such. There’s no such thing as the Brady Bunch. That’s just not the way that the world works. Every family has its challenges, every life has its traumas, and it’s how they overcome them. I think that’s most important and how much support we can have in place so that people have the best chance to do so.
Shantel:
I think that right there, what you said is key because there are going to be challenges in every family. And I think it was somebody the other day who posted. “You don’t know what’s on somebody else’s plate.” It might not seem like a lot to you, but you don’t know what else is on their plate. And that stuck with me and that’s something I’m trying to teach my children of course, is you don’t know what somebody else is struggling with, even if they’re smiling and seeming okay, you don’t know what’s going on underneath because there’s things like invisible disabilities and all of those other things. I have pots and tachycardia, but I can smile through it and I will smile through it because what are my choices?
Alex:
That is the most definitive choice you can make. It’s like with me, I have COPD, I smoke a pack of cigarettes a day even though I have COPD and then I have stage one liver disease because life of not being able to adapt to the world the way that it wanted me to be able to adapt to. But do you think that’s going to stop me from living or doing everything I can to make the world a better place every day? I’m still blessed to be here not for a second,
Jenny:
Which is why the three of us are together. Let me just tell you, Shantel, I didn’t get a chance to tell you how Alex and I met. I knocked on Alex’s door when I was door-knocking. And the reason why, so I had a pitch, you might’ve even heard me saying it on Twitter, which was we’re in the Apollo 13 moment. We need to put all of our resources on the table and decide how we’re going to, we have to make choices. We’re in a province that wants to do more than we can and people are falling through the cracks because of that. And certain people are getting way more than they need and wasting, quite frankly. And that’s the opportunity that I see in these conversations about talking about what’s catching going through the cracks. When I look at, for example, my work, like I said, I was in liability, so I was trying to address how to clean up oil and gas sites.
And so to me, when I look at the way it’s being done, it’s like every individual company is trying to do their part in this bigger problem rather than everybody pooling in. This doesn’t matter what your little problem is, we’re going to figure out how it fits within the broader agenda. We want everybody to succeed. How do we flip the system on its head and make sure we’re addressing the things that are falling through the cracks first rather than keep trying to get that last little bit of status? To your point about standardized testing, it’s just helping inform the “status” way of measuring kids. Rather than getting away from status and looking at what skills and abilities we are bringing. From my lens, we should be pointing towards real solutions. To your point, we’re still, both of you have said it, we’ve got a system that we know doesn’t serve us.
Why Are We Holding Onto A System That Did Not Serve Us?
Jenny:
It didn’t even serve us growing up, so why are we still attached to it and why? The one opportunity, I’m just going to offer that I learned from my friend Claire Kratz who helps with four kids. I’m not sure if you follow her at all, Shantel, but one thing she helped me understand is one of the things is climate education. We’re trying to get kids to be passionate and want to learn about this, but the reality of what they found is that the solution is leadership. We don’t need everybody to be climate scientists. We need everybody to have a leadership role in whatever place they want to lead, right?
Alex:
They’re coming out, can someone please sponsor Greta Thunberg to get a PhD in climate science so she can know what she’s talking about before she lectures the planet? I would love to see her education sponsored and then hear what she has to say.
Jenny:
What do you mean Alex?
Alex:
I mean she provided a real example of the fact that the world is not listening to their children.
Shantel:
I think when it comes to Greta Thunberg, I would’ve said her name differently, but when it comes to her and many other advocates, especially our kids, I think what she was doing is wonderful. But I think anytime we process information out there, we have to ask ourselves if it’s equitable and if it’s accessible. Because I always look at doctor’s notes as this example. I can’t read that thing to save my life, but the pharmacist knows what the hell he’s talking about. Great that those two are in cahoots and those two can understand each other. But I don’t know.
There have been doctors who would tell me what’s wrong with me and my heart’s doing this and that, and I think, “I don’t know what you’re saying, so I’m going to go home very confused and I’m not going to take care of myself because I don’t know what you’re saying.” You need to speak a language that we can all understand, and I don’t mean dumb it down, but what I want us to do is have information that is accessible. Have we made it visually appealing? Have we made it auditory? Have we made it so that everybody can access this information? It’s the wheelchair ramp to life.
Alex:
Who is involved? Who are the key players? Who is directly affected by the decisions that the key players make? What is the nature of the… Go through the six Ws? Like why, how, go through those systems of analysis, breaking things into their proper categories and then having those discussions within the groups that are most directly affected and the ones that are affecting them. How can we find common agreeable that are going to benefit everyone within reason? And then can we move forward with those common agreeable in mind, use a thought process to figure out how to maybe come to some resolutions? I think we could make a lot of headway, and that’s what we’re trying to do with The Gravity Well, thank you for including yourself in the conversation because it’s helping us to understand how to approach some of these things.
Shantel:
There’s going to be a way to reach a lot of people. I truly believe that we’ve come so far and we always talk about whether or not kids should be considered verbal, or nonverbal, and if they can be reached and yes, they can be reached, adults can be reached, we have to give them the tools to reach them. It comes down to what’s available. We’ve got braille, we’ve got cc, we’ve got a SL. We’ve got all these different amazing ways of communicating and to say that it’s impossible to make things equitable and accessible is lazy. We’ve let people get away with lazy accommodations is not the worst thing that somebody could have to do. It’s lazy to think accommodations are bad.
Jenny:
A hundred per cent.
Shantel:
We’ve all seen that little meme when the little wheelchair ramp is there and their stairs and the guy is shovelling the stairs and the kid in the wheelchair is like, could you just shovel the snow there? We’ll wait until the stairs are done and the kid responds. If you just shovelled the ramp, we could all use it. And that lives with me in everything I have. We made it so that there is a ramp that everybody can use and this is accessible.
Key Ways To Mind The Gaps
Jenny:
Beautiful. That’s so true. I’m just going to offer a bit of my reflections and try to tie it back into this model that we’ve built, this rock model, Shantel, just in case there are some takeaways that you can offer to it. So I’ll put it up on the screen here when I’m done talking. Some of the things I heard are common agreeables. Alex and I had a conversation with this group, New World Spirit, Mark McCormick is running it, and some of the takeaways that I’ve had from those conversations.
Just to give you some colour, Shantel, this is a group of intellectuals from the university and they use language in this meeting. I speak English and I have no idea what’s being said in this meeting. A meeting is meant to help us be able to have meetings, conversations, and effective work together where we can all be our best selves and not be taking like Alex said, positions that aren’t helpful for us. We’re taught, as he said, that we hate the orange person, and well, the blue head is also not even alive. Whatever those things are that we’re frustrated with individually, let’s put that away and let’s try and figure out how we work together.
My feedback just this past week was this language needs to be simple. This language needs to be so clear that anybody in the world doesn’t matter. If English isn’t your first language, you get it. And then secondly, as you said, it needs to be accessible to everyone. If you truly want an equitable system, having exclusionary language is a problem. And then also having exclusionary activities. And I’m not saying we have to limit all these activities, but what I mean is there are times and places for certain activities and if we’re constantly doing activities, let’s say specifically being at a desk all day, that’s exclusionary for a lot of people. These are just some of the takeaways I have. And like I said, I’ll put this crazy rock model up just so you can see it and see if you have any, as you’re going, maybe we’ll have some thoughts on it. But yeah, I dunno who wants to go first, but I’ll stop talking.
Alex:
I’ll go first so you can have the last word. Teams are great as long as they shake hands at the end of the game, as long as they’re civilized with each other. But when they start destroying each other and swinging mud and doing everything they can just out of sheer animosity to prevent anything from actually getting done, I think that’s a divisive quality within our society that’s just totally counterproductive. And so there’s that. But when you’re dealing with nuclear weapons, that’s a different story. There needs to be a sense of maturity within our leadership that I don’t frankly see these days.
Jenny:
No, nowhere. No.
Alex:
I think it’s extremely dangerous. I think they’re playing with a fire that they don’t understand and it could set us back a thousand years if they’re not careful. So that being said, I think there’s still a lot of hope. You can’t play high school schoolyard politics with nuclear weapons or bioweapons for anything else. You can’t gamble with our lives, you can’t gamble with our children’s lives. You need to find a way to work together. And I think finding a common language is probably the best approach. We don’t need more nuclear visions. We need a new clear vision. And with that, you have the mic.
Shantel:
With that, I’m going to speak loudly and proudly for persons with disabilities. Without autistic neurodivergent, ADHD minds, we wouldn’t have some of our greatest scientists. We would not have some of our greatest authors, artists, poets, and musicians after you name it. Some of the greatest minds that we have seen in our world are neurodivergent minds. Some of them are responsible for saving the world many times over. I think one of the ways that we can move forward is by understanding, and I don’t mean it is just neurodivergent, of course, I want to be loud and proud about disabilities, but this was with anybody. The more we bring in, the more we save. I stand by that so much the more we understand other people’s ways of working and brains, whether it is religious. I talked about this with my brother just tonight.
We were talking about religion, and I consider myself omnis. I find beauty in everything. And I think there’s something to be said for every religion and faith and culture. And they all have these amazing things that we can learn from and grow from and theologies. And I’ve studied world religion and Taoism and Buddhism and just all these things. And what I took from all of it was that there’s so much that we have in common. There’s so much that we can learn from each other and grow from each other. And you take people with disabilities and you allow them to show what they can bring to the table. We’re going to help them come out of those cocoons and we’re going to let them see how far they can go. We’re going to see this potential. I think we have an opportunity in this world to change things. And I think these are the minds that could change things. We’ve got some missed opportunities with these kids. And instead of these situations we have right now with so many addiction problems and everything, if we could just fix this mental health stuff, if we could really get to the core of so many of these problems and just bring a little love back and a little concern and a little compassion, but also an awareness that your way isn’t the only way.
Alex:
Your faith. So to use language and tell a dad joke on that point. Exactly. Why are we dissing people’s abilities?
Shantel:
That was a great dad joke. That was a clean dad joke. Yeah. But this is just, and that’s the
Jenny:
Another that always has stuck with me from something you said, and Leah, for that matter, is we’re all going to be disabled at some point in our lives, if not several times over. And so for us to look at those that have any sort of holdback today is really with disdain with, oh, forget. We don’t need to spend on that. That’s just one person, blah, blah, blah. Karma comes right back around and that’s why we’re at where we’re at. And it’s gotten so complicated and everybody’s falling through the cracks no matter where you come from, quite frankly,
Shantel:
Everybody has something to contribute. I am so tired of people writing people off because they see somebody who’s not verbal or whatever, forgetting that maybe if we just had the tools to communicate, they would have a lot to say. There are just so many ways that people can contribute. And the idea that we just write so many people off hurts me. It should hurt all of us because we are losing potential. We are losing just so much in this world. And even if all they can move is their pinky finger, I promise if they could make use of that, they would. There are so many,
Alex:
Well, look at how much credit we give to Steven Hawkins.
Shantel:
Yes.
Alex:
Right. He’s a prime example of that. Right. Or Christopher Reeve, the original Superman, and he said, “I will die when I can move my finger” after he fell off the horse. And guess what? He moved his finger on Larry King Live and then he died like three days later because he proved that even as a quadriplegic, he was still Superman. There are all these examples of people with abilities and just because we don’t understand their frame of reference or we don’t understand their form of perception, we just put it into a category of disability. But that’s not because they have a disability. They just have a different perception.
Shantel:
That’s the social model of disability. Right. And that’s why I always use the wheelchair model. Something people can visualise right away. We could talk about braille, we could talk about ESL, but wheelchair ramps are pretty universal across the world. You’ll see them. There are ways that we can use to reach people. There’s a gentleman here in Edmonton and I think Jenny might know him. His name is Brad Bartow. He created a company called Accessible By Design, Brad is going to come for me if I quote that right. But he’s created this company and he is in a wheelchair and he is not mobile. He is phenomenal. His story is amazing and he just created this company and now he’s working for big comedy ventures and I think he discussed something in Spruce Grove. He’s consulting, he’s created a consulting company to make sure that their buildings are accessible and their restaurants are accessible and he’s doing all this stuff and he just hit his first hundred thousand.
We were celebrating that this week because in two years he has just done this because he wanted to show people that he could and he can. And he’s not going to let people stop him. And Brad again like us, has some privileges so he can say, I’m not going to let people stop me. We have this job to do with our privileges. Going back to that quickly, and this is going to be my final thing, I promise we have a job, we have some privileges, and in those privileges, we have to do the work. We have to take it a little extra step. For those people who don’t necessarily have those privileges, I’m hoping we can lift them out of where they are, but that’s why I’ve gone beyond my children. I could advocate for my kids and be fine. And we would be fine.
Jenny:
Yes. Thank you for saying that Shantel, because I should have said in the beginning, that the work you do is on your own time. I understand what it’s like to be an advocate now. I am proud to be in this circle. Now I have to say, but I want to offer that I believe that we are in, as we’ve said, this system is breaking down and we need to, you and I, other advocates like Alex has become, whether he knows it or not, is that we are
Alex:
Empower, just a foreign citizen. I’m trying to understand and then find a way to translate to other people in a way where they’re not going to bite my head up.
Jenny:
The opportunity, like you said, to unlock potential is right at our fingertips and the amount of people that are starting to wake up and get involved in organisations like yours and get on the ground. I’m doing things concerning water advocacy. I can feel the momentum building right now. And I do think that all of these ideas, solutions, whatever that we have in mind are going to get heard quite soon. The more I can do, and we can do, excuse me, to help get your advocacy pieces out, please know that we’re here for you in that way. Thank you so much for your time, Shantel. Of course. I’m so grateful. I feel like I have a bit of Stockholm syndrome going through the election and still having your friendship on the other side means a tonne to me. Thank you so much.
Shantel:
Absolutely. You were the real deal. I appreciate you.
Jenny:
Same to you. Thank you so much. Alex, any other closing words before we wrap up?
Alex:
Yeah, I think it’d be awesome to continue the conversation, maybe dive into other directions or what else you’re doing, what groups you’re associated with, and see if we can maybe find some of those common agreeable through using the system, why
Shantel:
We could do this all day, Alex.
Jenny:
We’ll bring you back in, we’ll say round four because I think that would be good timing in terms of we’re coming into a new school year, what’s happened over the summer, what are we lining up to? I think that would be helpful to swing back around. I feel like this year is the year for people to be able to impact big in some big ways. So however we can support and please hear if anything comes up in between that makes sense for us to touch base and just promote for you, Shantel, we’re happy to do that as well.
Alex:
You can shoot me an email at alexander@thegravitywell.net.
Shantel:
Hey, the next one we can go into private schools, charter schools, and public schools.
Jenny:
Whoa, there you go. Absolutely. We didn’t even talk about that in equity. No,
Shantel:
That’s a big ball. That is a whole topic and we will get into that and why neither government group will ever speak against it. And that’s a whole talk and that should be a little bite to the next. It’s a
Alex:
Great way to get casinos to pay for pencils and textbooks, isn’t it?
Shantel:
As a former fundraising committee chair. Oh my.
Jenny:
Okay. Thank you so much. I’m so excited. Yeah, that’s our next topic. Absolutely. Thank you for that.
Shantel:
You got it.
Jenny:
That works. Okay. Thank you so much. Signing off.
The players: disabled children, parents, and siblings; the public and private school systems; healthcare; all ministries and departments within the Provincial government; all people living in Alberta.
Power & Gaps: community; safety; accessibility (healthy activities and language); physical, emotional and psychological needs met, including early assessment, accommodations, belonging, choice, and being good at something.