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Join me, Jess VanderWier, a registered psychotherapist, mom of three, and founder of Nurtured First, along with my husband Scott, as we dive deep into the stories of our friends, favourite celebrities, and influential figures.
In each episode, we skip the small talk and dive into vulnerable and honest conversations about topics like cycle breaking, trauma, race, mental health, parenting, sex, religion, postpartum, healing, and loss.
We are glad you are here.
PS: The name Robot Unicorn comes from our daughter. When we asked her what we should name the podcast, she confidently came up with this name because she loves robots, and she loves unicorns, so why not? There was something about the playfulness of the name, the confidence in her voice, and the fact that it represents that you can love two things at once that just felt right.
Welcome to Robot Unicorn, hosted by my parents.
Jess and Scott.
I hope you enjoyed the episode.
You just introduced yourself.
My name is Bricklyn Marks, psychotherapist, friend of
Justin Scott's.
I work with families and individuals and kids with perinatal parenting.
also disability sport and it's something I've always loved to do.
I feel like when I met you you wanted to do like a different type of counseling.
Genetic counseling.
Genetic counseling.
That was my goal at the time.
Yeah
Which is what?
Can you explain what that is?
Yeah, so it's basically supporting parents with understanding their genetics before they have kids or after they have kids, understanding diseases and any kind of
dispositions other kids may have.
So like my parents when I got diagnosed with my disability went to genetic counselor, had the testing done, kinda got diagnosed, and then they kind of worked with my parents.
through like what my disability was, what it might look like.
And at that time I was already diagnosed.
I was like two years old, so like it was already established.
But they did like testing on my brother and like
some other family, but a lot of people see genetic counselors prior to having kids if they know that they're a carrier for something or they want to know kind of like options of
what to look for and like different options, alternatives, stuff like that.
So that was my intentional goal when I went to university.
And it's a very competitive program.
I think there's like
80 people per year in Canada that get accepted.
After a couple years it was like just not feeling realistic, not attainable, and I kind of shifted more to the psychology social
Support rather than medical support was kind of where my interest ended up gearing towards the right university.
So would you say that's roughly what you're doing now?
That's where I ended up.
So it ended up being good and I kind of started looking at programs.
I was a few years behind us.
So I kinda saw where she went with school.
I kinda like
Accordingly, similar trajectory, and it ended up being where I wanted to be.
I feel like it was one of the things we bonded over early on.
Yeah.
Right.
So just some history on Brooklyn and I.
I worked with you and for you for a time as a personal support worker.
But in doing that we ended up just spending all of our time together every morning and then I think for a while I was doing like almost all of my almost all of your care, your personal care
And so we just ended up spending like hours together every single day.
And I would come to your house and we would just study between personal care appointments and
We would talk about school and life and everything.
And so I feel like our passions just kind of aligned and that's really what drew us to each other.
And we just always had so much to talk about
I don't know, I always kinda miss those days.
Like a simpler time.
I know it was really simple.
Everything seemed easy.
It was just work.
Oh, I'll go to Brooklyn.
It's funny.
Spend a few hours there.
Yeah.
Well, it's funny because yesterday we were recording an episode that will
be going out the week before this one.
You were talking about Barry unlocking all these memories that I haven't thought about in a while in so long.
It's it's funny how we're talking about a the basically the same time frame right now.
Mm-hmm
I was talking about so Barry is also someone who I talked about in the episode before this if you haven't listened.
And I was explaining how he was a good boss, a good leader.
But that's also someone who Brooklyn knows.
So you can uh He guided me through all of university and I think my experience in university was only as good as it was because of him.
Like I would say that with like
absolute certainty I toured tons of universities, different student supports and nothing even came close to what he was able to like offer in
The support and guidance that he gave was just next level.
Yeah, the program that he ran and the support he offered was incredible.
Yeah
Yeah, we were talking about him yesterday and I was just thinking about how incredible he was and then I was like referring to leadership and parenting and I was like we need to be like Barry
Essentially.
Yeah.
It's totally true.
I could see that.
Yeah.
To go back to our history.
So I worked with you, for you.
We became really good friends
Then we just stayed really good friends forever, still are.
And then when I was starting Our Mama Village with Scott.
Before that.
Jessica Grace Block.
Oh, yeah.
It was prior to even our Mama Village.
It wasn't even our Mama Village, yeah.
When we were starting Jessica Grace Block.
I remember you came over to our apartment.
We did a whiteboard of all the things that we wanted to talk about.
We made a plan.
It was for blogness.
For Vlogmas.
Yeah.
That was.
It was like once was it every day or something leading up to Christmas?
Yeah, we did one blog every day leading up to Christmas for a month.
And think your goal was to get like two thousand people.
Yeah, and our goal the first year was like a community.
It would be amazing if we could grow a community of followers on Facebook, I think it was, to two thousand people
And it ended up taking us a long time to get to 2,000 people in the community.
But yeah, Brooklyn's been working with us since Jessica Grace blog days.
And not even a lot of people know about Jessica Grace blog taste.
Yeah.
And Jessica Grace blog turned into Our Mama Village, it was turned into Nurtured First and you've been there every single step of the way.
It's been very cool to see it grow.
Yeah.
Well and you've been part of it.
Right.
You've been a huge part of helping you grow.
And now you're on the podcast.
Now you're on the podcast.
Apparently God's a podcast mouse.
Yeah.
What?
Wild.
So Brooks been with us since day one on uh our mama village and Jessica Gray's blog and Richard First.
So I feel like everyone should give you like a round of applause for dealing with Scott for
Those many that many.
How is this all of a sudden turned on me?
That's unfair.
Yeah.
Gosh.
That's why.
That's why you get the round of applause.
I'll take it.
Just because of having to do it.
Yeah
All of yours.
That takes a certain type of personality for sure.
But all that to say, we love you.
I love you guys.
Yeah, thanks for being on.
Yeah, happy to be here.
Yeah.
And I mean there's so much in between that.
You've been there for us for all
Three kids being born, you know.
Yeah.
So before we get into like all of the advice, because today's topic we want to talk to you about speaking to our kids about disability.
And I feel like this conversation applies to a lot more than just about disability, but maybe you can explain.
So you have what's called SMA or spinal muscular atrophy.
Yep.
Could you explain?
Thank you.
Even doctors don't get it.
Cheers true to you.
Could you explain what that means?
So first of all, like what that actually is
Yeah, so I would say the closest for people to know.
Most people know what ALS is, and I would say it's the child version of that.
You know, it's different in terms of genetics, but starts when you're young, typically, depends on what type you are.
I'm type two.
So I started when I was two was when I got diagnosed and it kinda just
slowly muscles deteriorate over time.
So kind of similar to ALS, but a little bit more gradual.
Again, depending on what type type you are.
It's a big spectrum, so
Mine symptoms started when I was like eighteen months and then my parents took a while to get diagnosed 'cause it's technically rare.
In my brain it's not rare because it's very common.
So you know so many people that is hard to conceptualize it being rare, but technically it's rare.
Okay.
So it was harder to get diagnosed.
How long would you say it took your parents to
figure it out when you were young.
I mean my mom knew something was wrong around Tub Months.
So it took over a year to get an actual diagnosis.
We're from a small town.
So that didn't help 'cause they kinda just dismissed her and my mom has some really good nursing friends that were pushing to really make it clear that like
you need to be pushing for further investigation and looking into what might be going on.
So I think she saw a few doctors in the area and then finally pushed to get referred to London, which is the bigger city and it was diagnosed like immediately there
'Cause they were familiar with it, but our small town was not.
She had a lot of pushback from doctors saying it was like difference between a boy and a girl, because I have an older brother, just like first and your second, like just different kids
But that was not it.
My mom knew.
My mom knew.
Yeah.
Yeah.
They knew immediately.
So I feel like even that in itself is such a powerful thing to just say to parents.
Like if you feel something's wrong, push for it.
I mean we say that to parents, it's like no one is gonna be as good of an advocate for your children as you will be.
And no one's gonna care as much about your children as you will.
And so sometimes that means you say, No, I still feel like something's wrong, even if
The doctor's like, Oh no, it's fine.
So good for your mom for doing that 'cause that probably was hard to do.
Yeah, it it was hard for her to push, but she had a really good village behind her, like pushing for like you need to get it checked out.
Like there if there's something wrong and you feel like there's something wrong and there's clearly
Like there was physical symptoms and she pushed for it and ended up getting what she needed to know at the time.
It's changed a lot since then.
Yeah, I bet.
Yeah, I bet.
You know, thirty years very different.
Yeah, no kidding.
Yeah.
For sure.
Yeah.
Yeah.
So again before we get into any of the advice, can you talk about some of your earliest memories related to SMA?
Specifically around how adults, parents, teachers, strangers talked to you or about you, about your disability?
Yeah.
Couldn't count on the amount of times where strangers interject, come up, poor girl.
You have so sweet.
Do you skim me money when I was little or cookies and all kinds of stuff like the amount of things that
Strangers do.
Weird.
Lots of praying for you, lots of touching your head, like and I remember that from a very, very young age.
Like
Two, three, four.
So it was either that or it was very like belittling, like, oh she doesn't need to be included or oh, like she can just sit on the side or oh, like that's fine, but we're doing this
Right.
Like a exclusion.
So those are the two big ones.
The strangers were like most memorable.
Mostly 'cause I just didn't get it.
Yeah.
Right.
Right.
Cause I'd be like, okay, my brothers were beside me.
They didn't give him a toonie
To go buy a tree.
The money kills me.
Like really.
Yeah, go buy yourself a treat, like give him me a toonie.
And like my brother would be like, what the heck
How did she get this?
Like he would just look to my mom like how come she gets this and we would gently say no thank you, but they push and that is interesting.
And for those who are listening, a toonie is in Canada two dollars.
Yeah.
Yeah, it's just our the term we use for it.
Yeah, so I'd say that was like my earliest.
And I mean that goes all the way.
I still get strangers doing stuff, but
Especially when you're a little kid who's really cute and a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit
You were a very cute girl.
I was a very cute little child, right?
We'll need to find a picture to share on Instagram.
You were the cutest kid.
Blonde hair, blue eyes, like
A little doll.
So everyone cares.
But I feel like as a kid, then it right away tells you like there's something different about me.
Yeah.
People notice it.
Yeah.
So how how do you feel about that when you're a child?
Like do you have a certain feeling about that when you were a kid?
I it was strange because I was always just in my own world.
Like I didn't really think
of what other people were seeing or like interpreting at that age.
And I don't know if that came with time.
But I was just always confused
by those reactions and I was a very typical kid, like just play and go about my own business and want the toy in the store and cry if I don't get the toy in the store and
Like it was just a very typical experience and I was just confused when that happened and I would kind of just aloof it off.
When I was really young I would just kind of push it away and just be like, Okay, that's weird and then just continue on.
But I think as I got older, when I was closer to like
Pre-teen, it started being a bit more internalized.
I was like, okay, like people notice this, can't really hide it.
Yeah.
This is weird.
And then you kind of like interpret their messages as like, oh
you know, if you want to pray for me then maybe there's something wrong with me to be prayed for.
This idea a lot of people coming to you as being like, Oh, I I'll pray for your healing.
Yeah.
That type of thing.
You're like, I don't need that actually.
Like I don't need you to pray for my healing.
Yeah, and there isn't.
And there isn't.
Yeah.
At that age I'm like, there is no treatment, there's no way to stop it.
Like thank you for the intention, but like it didn't really do much other than tell me that it needed to be fixed, which is a message that I don't think kids need.
when they're navigating that.
No.
Because there was nothing broken in my brain.
Like I didn't feel broken until you're told that you're broken and then it shifts.
Yeah.
You hear that often enough.
Yeah, yeah.
Yeah.
Yep.
Yeah, and it changes as you go through, like different teachers, different principals behaving in certain ways.
We had a really tough time in our school system.
where I was the only kid with a physical disability strictly in my school all the way from kindergarten to grade twelve.
So I was the only one that was like in mainstream classes just with a physical disability and that was a lot of pushback from teachers and principals
Making assumptions that I needed to be in different classes, special special education, in the hallway.
We had a lot of weird experiences.
And my mom was an incredible advocate and she fought for everything all the way through, but we had a very messy education experience.
And I saw it all.
Right.
Because I'm, you know, think people assume that children aren't listening and not paying attention and they're just like in the room.
Yeah, right.
But you hear everything
You see everything.
Yep.
You soak it up, you internalize it.
And then you get confused when you're like, okay, if you're saying one thing and then you're doing this.
It's confusing and I think I got that more and more as I got older.
Totally.
Like it's so sad to think and and you know, 'cause we've been talking about this too with like the book and stuff like that.
But like
you actually were fine with everything, right?
You're like, I'm not broken.
I'm good.
I'm okay.
Yes, I have a disability, but it wasn't like in your head an issue.
No.
Until other people started making that an issue.
Yeah.
Until I learned that that was a narrative.
Yeah.
And then that becomes a story that you tell yourself.
I am broken, I guess.
Like I didn't think I was, but I guess I am
Do you remember a time when that kind of shifted more from like, yeah, I'm fine, I'm a normal kid, to like I'm feel like I'm broken?
I wanna say grade five, six, seven.
That makes sense
That's the age.
And you know exactly that, right?
That age for girls in general is hard.
And I think that's when peers started changing the way they treated me.
I started being able to understand what adults were saying more and making connections that all of a sudden like oh making these connections that
are different than what I interpreted before.
Right.
Under that information and make
These different connections to what was going on, which we see a lot for that age.
Yeah, and you're saying that as as therapists, that's the age that you're seeing.
That's why we're like nodding.
Yeah.
Because we see a lot of girls in our practice.
Um Brooklyn also works with me at my therapy practice
But we see a lot of girls at our practice that are that age, grade five, six, seven, eight.
And it wasn't just you, it was the girls in the class also were going through their own probably identity crisis.
But then everybody's always taking it so personal because we're not recognizing every kid in the class is struggling.
Yeah.
And it's so hard.
And then the message becomes, I'm broken and I'm I'm the issue.
Yeah.
Because when I was young
It was usually adults that gave me that message.
I never felt that way from kids.
Yeah.
Like when I was, you know, grade five under was like I had tons of friends.
They were very inclusive
I was invited to all the birthday parties.
It was very like easy and it didn't feel weird.
Kids are so forgiving, right?
They're just like, oh, you're in trouble.
Okay.
Yeah, but it doesn't really phase them, right?
Even see it with our girls.
They're just like they come up to you and they're like want to ride on your wheelchair with you.
Like yeah, you're just in this and they don't really ask questions.
They don't
I don't think they've ever questioned you being in a chair.
Yeah.
They just well they jump on you.
Yeah, they're just like, oh like Brooklyn sits in a chair.
Yeah.
That's what it is.
Like it's so easy.
And then like five, six once kids start getting the ability to start questioning and understanding things and that's when it shifted, I would say.
Yeah.
Is when it started to become pure
driven as well.
Okay.
It makes sense.
Yeah, that's an extra dynamic that you're adding.
Yeah.
Before it was just adult strangers who were weird.
So then you have both.
You have adult strangers and adult not strangers.
Yep.
Treating you kind of
like pity, like looking down on you or treating you different.
Or exceptional.
Or exceptional.
We swing one way or other what do you mean by that?
Uh a lot of inspirational.
You're so amazing.
You're so wonderful.
You're so exceptional.
You're such an inspiration to me.
Like for breathing.
Yeah, yeah, right.
Oh, for getting out of bed in the morning.
God, I could never do what you do.
Like you're so strong.
And it's like I understand the intention.
Condescending kind of.
Well it's kind of like I didn't do anything
Yeah, right.
So Brooke, I don't know if you remember this, but I have learned so much from you, obviously, about
disability.
But I remember when I started working with you and we just got along really well off the bat.
And I think there is someone else working for the same company that I was working at, like a few people.
You know where I'm going.
And one of them really kind of babied you, like treated you like a baby.
And I remember you starting to like rant to me the more comfortable we got with each other about this worker that you had that would be like honey and stuff like that.
And then I remember one day she called you like an inspiration to her.
And then I saw you after and you were like, I'm not an inspiration.
What do I do?
I just sit around and watch TV all day.
Like, how is this inspiring?
And I just always will remember that sticking out to me, right?
Because I think so many people will probably come to you and be like, you're an inspiration.
And you're like, that actually is more offensive to me than you not saying anything.
Yeah
It the intent is good.
Yeah.
The intent is pure.
They wanna recognize that I I face challenges and I have to deal with them, but I have to deal with them.
I'm not like
choosing like I didn't win a Nobel Prize.
Like I'm not like doing anything.
I'm just existing.
Yep.
Um and I think when it's framed as inspirational solely because I'm living with a disability, that's when it's not
Okay.
Because it's like if there's, you know, when it's strangers especially that are like saying that, and I'm like, I could be a horrible human.
Yeah, you don't know.
Like you don't know me at all.
And you're making this assumption solely because of the chair.
That's when it's like and then they give me five dollars.
Which what can that actually buy you?
It's not gonna fix your wheelchair.
It's not gonna be it's five hundred dollars.
It's different if it's like if it's a thousand dollar check or something.
Yeah, yeah.
Okay.
I mean I'd still be annoyed, but I'd take it.
I wouldn't have got it.
Yeah.
Not an idiot.
I mean to be fair, I would take it too
No, I saw that.
I'd be annoyed, but I'd take it.
Yeah, right.
Yeah.
But I like I'll always remember that because I feel like that day, and it's just that I was young too, and like I just hadn't really thought of that
Yeah.
But that day I feel like it just opened my eyes to be like, oh my goodness, all the things you must have to go through.
And like you and like disabled people everywhere.
You know, and
working in the work that I've done, how many times have I seen people, even companies that work with people who are disabilities, who have like inspiration in the slogan, who
Like I don't know if you want to speak to that, but I just feel like the language that is the language is about one, yeah.
It's it's tough.
It's tough
Yeah.
I think just first of all I just want to note that like I appreciate you letting me rant at you for days and days and days.
Because I didn't have a lot of outlets at that time
Yeah.
And I was still learning everything and I was still figuring that out.
And I always felt safe to just like spew things at you.
And I never f
Felt like that was like gonna be turned.
There's always a fear of like it being interpreted in a wrong way of me saying that and then people are like
Oh, you're not grateful for a compliment or oh you know, whatever.
And it's like, no, like that I needed that safe space to like rant and let that out and appreciate that you
You've always been that person that's like able to handle those rants.
So that's really important to me.
I mean Jess is probably the safest person you could talk to.
She really is.
Yeah.
Maybe not for that.
Does it make you feel better if I say maybe not for me?
I know.
I know I'm safe too.
I mean to you, but I'm safe too.
But no, Brooke, I think about those days and I just think about like really how young you were to like go to university, be on your own for the first time.
And then I feel like when we started to get to know each other and spend so much time together, you were like processing all the things too.
for the first time, right?
I think early twenties were like the most processing for me.
So I feel like we were together for a lot of these years where you were processing
a lot of the trauma and a lot of the comments that you experienced before moving away to university.
Yeah.
So I feel like that's why also you needed that safe space and we had so many of those conversations because like it was all coming up for you for the first time
Or maybe not the first time, but like in a deep.
That's an age where you understand adulthood a little bit more.
And you understand that people are just because they're adults doesn't mean that they know what they're doing
And I think that that was like really the age for me where I started doing a lot of like my own therapy and like figuring out life.
Like I literally remember you going to your first therapy planet.
Like I were one of the ones that were like, we need to go.
Like we're gonna go and do this.
Like you were the one of the ones that encouraged me to end up going.
I didn't want to go.
Yep.
I remember encouraging you, be like I think you should try and go to therapy.
And like this was early on in our friendship.
Second year for me.
Yeah.
And I remember you coming back from therapy with a rock.
Do you remember that?
I still have that rock.
You still have the rock.
I do.
I still have that rock.
That's I have a little like plate with all my little rocks from I had a therapist named Sue.
She was great.
Every time I went there she had like a big bowl of like s rocks with different
textures and whatever to like rub and ground yourself with and I'd always come back with the rock.
Yeah.
And add it to my little pile.
Yeah.
And I just still have that little bowl of rocks.
Yep.
Yeah
I can't let them go.
I just remember coming back from the therapy session, like, look Jess, I got a rock.
And we were like, Okay, that's a start.
So cool.
Yeah.
But yeah, those kind of things I don't know, just ingrained in in your head.
But it's been really cool to like watch you over the years, like go through that time when you felt
really broken and obviously it's not like this journey's ever over, right?
When you're on a healing journey, it's always.
But now seeing you like literally supporting kids who are going through some of the things that you used to go through, like yeah, it's pretty cool to see
Feels full circle.
Yeah, really full circle.
Yeah.
Hey friends, so at pickup last week our daughter asked Scott a truly
kind of tricky question in front of her younger siblings.
Scott was telling me that when he heard a question like this, he used to panic, but this time he had a plan.
And he said to our daughter, thank you for asking.
Let's talk tonight when we've got privacy.
And that's a line that he learned straight from
our new body safety and consent course at Nurture First.
So this new body safety and consent course is taught by me, so Jess.
If you listen to this podcast, you know me.
I'm a child therapist and a mom of three and I have taught body safety and consent education for years.
This course takes all my years of experience teaching this education and gives you calm, age-appropriate language for body parts, consent, and boundaries.
You'll learn how to teach your kids that no means no, you'll learn how to teach them to read facial cues, you'll talk about safe and unsafe.
safe touch and you'll even teach them about their uh oh feeling.
There's guidance inside this course for the real life stuff like tickling that goes too far and even the difference between a secret and a surprise.
We made this course at Nurture First because research shows that body safety education helps kids speak
up sooner and we want that for our family, for Scott and I, but also for you.
So check the course out at nurturefirst.
com slash body safety and to save 10% use the code
Robot Unicorn.
And just full disclosure here, we are the creators of this course and we're so proud of it.
So one of the big things that I think parents
face or that is hard for them is using the correct terminology or language.
So from your experience both
personally and as a psychotherapist so professionally.
Why do you think so many well intentioned parents freeze up or shy away when it comes to talking about disability with their kids or with
even other kids like you when you were little.
I'm sure there's a m myriad reasons.
But is it largely because there's the fear of saying the wrong thing?
Thing?
Or do you think there's deeper discomforts that are at play when it comes to parents dealing with disabilities?
I think there's a really big fear and 'cause people are often well intentioned and I think they're scared of saying something that is hurtful or offensive or inappropriate
And so they think the better choice is to say nothing.
Right.
It feels safer for them.
And I think it also comes from a place of not knowing, like not understanding.
I think when we don't know something, that's when we feel most worried about saying something wrong.
Because we have if we don't have the confidence to say that we know the subject or we have an understanding of it or
we have done some of that work and I think a lot of times parents or people in general just if they don't have a base understanding or feel comfortable or have they never been in the community
Whatever that might be is they are worried about saying their wrong thing.
Yeah.
And will resort to not saying it.
So I think
For me, and uh that's a really hard thing for me to constantly kind of remind myself, the concept that someone's never encountered disability
I can't imagine that.
Like it's so foreign to me that that is something that a lot of people have never actually encountered.
And that to me is just like
mind-blowing.
And so I think I always have to remind myself that like there are some people that that have had zero experience with disability for again many, many, many reasons why that's the case
But it becomes this thing that is scary for them too.
So Jess and I were talking just before in preparation for this with you.
And I was like, I don't even know if I know the right terminology
And just refuse to tell me the right terminology.
Oh, that should be fine.
So what does saying it right actually mean in this context?
Like if I even being friends with you, I actually don't know if it's supposed to be
Person first language, disability first language.
I was talking to someone who said that they went through like HR training or corporate training and they were told to say
that people with disabilities were differently abled.
I'm like, I'm pretty sure that's not the right thing to say.
Correct.
It's gone on that one right away.
Well I even said that.
I was like, I don't think that's the right
But again, you're getting this information.
You're like, oh, okay, that sure I guess that makes sense.
And I feel like at one point it might have been person first language and then maybe it changed to disability first.
So it's like it's almost like you're trying to
Can't keep up to it.
Yeah, and then you're terrified because you're like, I don't want to say something that's gonna offend anyone because I actually have no idea what I'm supposed to say.
So I guess
Uh is it precise terminology in the end really matter that much or is it more the intention and the attitude that people have towards the conversation and like just being open about having a conversation about disability?
So
Language is tricky because what we say, even if it's intended well, makes a difference.
So
I think when we're using like for me when you just went through that, there's like two categories in my brain.
So there's like either disability first or person first language, which to me are pretty interchangeable
I personally prefer disability first language.
It's an identity thing for me.
That's like a personal preference.
I don't get upset if someone says person with disability.
To me that's like not a huge deal.
I think where we get into the kind of the tricky territory is when we're using euphemisms to disinst ourselves.
So like euphemism of like differently abled, handy capable is a big one.
Which mm my partner and I make a lot of jokes about.
Yeah.
Oh yeah, that's yeah, that's another one like handicapped for like him.
Like I don't even know if you can say that or not
I think it's when you're distancing yourself from the word disability.
And I think that is like the differently able part of the point.
or even special needs, even handicapped, whatever word it is that's avoiding the word disability, even if it's meant in a good way, it's inherently distancing yourself
from disability.
And often that gets interpreted as if it's so bad you can't say, then you're positioning it as something bad.
or something to be avoided.
Right.
Which is not welcoming.
It's not something I would feel warm and fuzzy about.
I would kind of go, oh like, y just say I'm disabled.
Right.
I'm disabled.
Like it's the reality, it's the truth.
It's the real situation.
We don't need to sugarcoat it.
We don't need to hide it.
We don't need to avoid it.
It's just disabled.
And so when we're using all these other little like cute terms
Yeah.
Which when you said like corporate is teaching this can guarantee that corporate person's not disabled.
Yeah, or in the community whatsoever.
So you need to be listening to people
And I always just say ask.
Like if you're really unsure, personally.
No.
Like to even add.
No, I think it's actually consider it personally.
Where I'm like, oh like you actually know that this can be an icky situation for people.
And you're going, oh, I'm just gonna ask.
Yeah, because like you're mentioning all the different
terms.
There's a million.
Yeah, and like the thing is in my mind it's like handicapped, disabled, they all s I sort of I get what they mean.
So then in my mind it's more like
I don't even know which I guess disabled is the right term.
Mm-hmm.
There's nothing wrong with the word stabled.
Right.
And I don't think
If, let's say, I were to say, not that I necessarily would, but if I were to say those terms, I would say it with the exact same attitude and intention.
It's literally just the fact that I have no idea that saying that is I don't know somehow distancing yourself from disabled, which in my mind like the way I learned it, just sort of interchangeable See the thing is you're both
Professionals.
So then you understand maybe a lot more about this, but I'm just saying from someone who ha has no professional training in anything related to psychology or
Any of that like to me they kind of all have the same meaning, so then it's it would I can imagine other parents will feel the same where it's like I actually mean the exact same thing.
It's just
Yeah.
I said the wrong term.
Uh-huh.
And so I feel like there's like two things.
So there's one thing if you and correct me if I'm wrong, but if your intention is good.
Right, and you're like, I I wanna say the right thing and like you're asking the right you're asking questions, right?
And now you know Brooklyn prefers
disability first language, which like as an example, when you write your bio as a therapist, you would call yourself like a disabled therapist.
So that's what a disability first language is.
We're putting the disability first, right?
So now that you know that, you wouldn't go ahead and say differently able
No, right, of course.
Right.
And so I think that's the main difference.
It's like some people just they don't know what they don't know.
They've been trained a different way.
That's not really their fault.
But if they learn it, then I think the onus would be on them to to use the correct language.
And then I would also say that if you're someone who's teaching this, you need to be talking to people who are actually disabled before you're teaching it.
And make sure that the information that you're sharing is accessible.
Oh, you're like saying in the ter in terms of like HR, that's it.
Because I think a big issue is we have a whole bunch of people teaching accessibility trainings and companies, like exactly what you were saying
who've never actually spoken to a disabled person or like got there in the or a very limited group of people that they've talked to.
typically, not to make assumptions, white men who are paraplig paraplegric.
That is like the like kind of the go-to.
If you Google disabled person, that's like the like
framework that people go off of.
So can I just not necessarily that it's right, but in defense of like the company the in this case it's a big company, so there's less excuse, but let's say for our company
we had you go over our policy.
But if you didn't work for us and we didn't know you, I feel like we'd just be like, okay, the lawyer sent this, this is what we have to use and that's the language that we would use.
And I think you had some things that you said maybe ch alter this and change that.
And it made more sense.
But because we know you and you're willing to help us improve on it.
But I feel like a lot of companies, like anyone in this building that we work in, they probably just
Work directly with the lawyer and we're like, here's the employee handbook for you and then we're like, okay.
It's the shifting the narrative of if you're gonna be running a company and you're gonna wanting to make that
an accessible format for everybody, you need to put in the effort to connect with an accessibility consulting agency or DEI, whatever that looks like.
You have to put in that effort as a company.
And if you don't, you could still survive technically, but I think you're gonna be facing a lot of challenges of inaccessibility or not being as good as you could be if
You put in that effort.
That's what I was just saying is like I would hold different people maybe to different standards.
So like for our therapist, I hold them to a high standard.
Yeah.
because you're a therapist, so in my opinion, you should be held to a very high standard.
Yeah, of course.
And you should know the most that you can, right?
And like a company if you're training a whole bunch of people, I would hold you to a higher standard too.
Yeah, this is a company of like
Five or six hundred employees, right?
Yeah.
You should do your research and have stuff already.
And it's available.
I think that's the big thing is that we're living in a time where everything is available online.
It's very accessible to go online, find an accessibility consultant, and deal that I think I even took a training though, and I'm pretty sure the training that I took
I don't know if you would have agreed with some of the things that they had.
It was the AODA.
No.
So that's the thing.
It's like this is a professional organization that focuses on that.
And they are maybe not even doing it
So that brings you back to parents.
Could be very well-intentioned.
And it sounds, I think, a little bit scary to even have the conversation at all.
Because like whether it's disability or race or gender or like all these different things, you have to sexuality, yeah.
You have to know all these different things and then it
is almost it's kind of impossible to keep up with that on top of just taking care of your your kids and bringing them to their extracurriculars and help making sure they do well in school and are fed well and
you're doing well at work, right?
That's where I feel like it's important to ha us for us to have a conversation about like how do you as a parent have a meaningful conversation with your children about things like disability and not shy away from it.
Even if
It's not something you understand at all.
I would start with parent first.
So I would say as a person, I hope that most people in my ideal world
Yeah.
Magical ideal world.
Yeah.
First of all, our system would be set up so that you encounter disability more and that these are conversations that you have.
Right.
If you have a parent with a or your your teacher is disabled or someone at a grocery store is disabled or daycare workers like any any just more people in the community
doing more things and there's a million reasons why that's not set up the way it is.
Mm-hmm.
Unemployment, subsidy, all kinds of things.
And that's I'm not even gonna get into that because that's like
Well we've dealt with that with you even working for us.
It's like his conversation.
Yeah.
It's it was almost challenging to even
be able to pay you because if we did then all of a sudden benefits go and we're losing this lose you up and then it's like they don't really make it that easy for a
Yeah.
And I'm someone in a very privileged point of view.
Yeah.
Right.
I'm white.
I have a family that's very supportive.
I have all these things that are working in my favor.
And it's still incredibly challenging
So I'm not gonna touch that 'cause that's just like that would be a whole other conversation for us.
Yeah, but I think we have to recognize that it's there first.
Absolutely.
But I think in my ideal world, people would also put in the effort to do that work
in general, read stories about and from disabled people, follow accounts, disabled people
Have their kids have books and stories and all these things that are from a disability firming perspective in their space.
But I think in order to have those conversations with your kids, you need to brush up on your own knowledge of that.
So I think a lot even for example the one conversation that you guys had around periods.
You know?
You're uncomfortable handling
the girls when they come to that age and all these things.
And the main reason for that is that you don't know.
You don't know what you don't know.
Mm-hmm.
And so the best way to feel more competent in talking to them about that
is by focusing on your own education and brushing up on what you need to know to be able to support them.
Right.
And I think the same applies for disability.
We all have inherent biases, we all have inherent stereotypes and stigmas
And the best way to kind of be able to approach a conversation with our kids without that interfering is to work on that in addition.
Yeah.
And then come to the kids to be able
to offer them a similar understanding.
So they don't need that when they're like thirty.
Yes.
Right?
'Cause they had it all growing up.
Which I wish everyone had.
But the reality is that that's not what the world is set up for right now.
I know, it's interesting because
Like even talking about training for here and taking the AODA training, it's like it doesn't even seem like that's like a professional organization that
Is he even supposed to teach it properly?
They're bare minimum in my opinion.
Right.
It's very low bar.
Right, okay.
half of their stuff doesn't apply to me.
Right.
Because it's not comprehensive.
So what they identify as something that is accessible is only for a very particular group of people.
Yep.
Which yeah, it's accessible for a particular group of people, but not everybody.
And so I think it's more about complete inclusion, all access designs and stuff that are
That's what we need to it it changes from person to person.
What works for me might not work for somebody else.
And that's okay, but we need to be able to shift it and accommodate it.
Accordingly, and that's not how it's set up.
It's set up as a checklist of if I do all these things, I can say I'm accessible
That's not how accessibility works.
Yeah, right.
Doesn't work.
Which is a systematic issue, right?
Like that's a system wide.
It's such a challenging thing because
Again, like as a parent trying to teach your kids about that, I'm sure there's so many different disabilities I don't even I'm not even aware it's a huge spectrum and it crosses every other
Identity, right?
Because you have black disabled people, you have queer disabled people, you have poor disabled people, and then you have everyone else in between.
And then every disability itself is a spectrum.
So even just looking at SMA for me, huge range.
Yep.
Like unbelievable large range.
It's complicated.
Does that add a piece in to just kind of blend all of this with everything else that we teach at Nurtured First?
Yeah.
I think it's just helpful for parents.
Just remember this.
Like every person wants to be known and seen and heard and understood.
And I think if you have that always in your head and you're approaching any conversation, anything you have from that angle, right, like that is why you prefer the term disabled therapist, right?
Because it's like see my disability
Acknowledge it, know it, understand that it's there, and then you see me.
Right?
I remember us having those conversations.
It's like if you don't see my disability, you just call me differently abled and we like skip over the fact that I'm disabled
You don't see me, you don't know me, you don't hear me, you don't get me.
So I think that's like at the really root of any of the language things, it's like what if your intention is to deeply know and see and understand someone, I think
then you can ask someone the question, how do you prefer I talk to you?
Or how do you prefer I like do you prefer me say disabled this?
Or do you prefer me say person with disability?
Like
But then the person on the receiving end feels known and seen.
And I think that's all really we're looking for, right?
Which I think we have a post from
That was years ago.
Yeah.
But I think it was with our Mama Village because I remember calling you on a walk.
I was going down the street.
And there was a company car.
I know exactly who you're talking about.
Yeah.
And it had this slogan, see the person not the disability.
Yeah.
And I called dress fuming because I was so mad.
'Cause it was like you don't see the person if you don't see the disability.
My disability has impacted every single part of my life
And if you pretend it's not there, you don't even know who I am.
Right.
Like it's so but it's meant like the same as uh positive thing.
That's like the same as say I don't see color.
Yeah.
It's the same thing.
I don't see color.
You obviously do.
So why and this is an agency that supports disabled adults, right?
Yes.
Yeah.
So they have that on the side of their van and Brooklyn and I are just like
That's what I just get really ramped up about it because I've heard that so many times this phrase is a compliment.
It's just it's not the compliment people think it is.
And I just think like if we can pass that mess, like it's a simple message to pass along to parents, right?
But like help your kids see disability
Help them be curious about it.
Let them know it exists.
Expose them to it in magazines.
Magazines.
Who are you?
That dates me.
books and videos and specifically seek out books written by disabled authors.
You're on Instagram, follow disabled people on Instagram, right?
Yeah.
And if you have questions
Look it up together.
Yeah.
I don't see anything wrong if they're like, oh, what is this cane?
Why do they use this particular cane?
Mm-hmm.
Be like, you know what?
It's a great question.
Let's look it up.
Let's take a look.
Let's see what's going on.
We look it up online
Find a couple people talking about it.
You can learn with your kids.
Yeah.
That's okay.
Yeah, and I think if you have the posture of like we just want to understand, we want to be curious and we want to help the people in our life who are disabled feel seen and known
I think that's all we're really asking.
And again, you can tell me I'm wrong here, but if we have that posture of curiosity, I think that's what you missed in your childhood, right?
Absolutely.
People weren't asking you.
They're having conversations above you.
And
on the other side of a door where you could hear.
Yeah.
Right?
Like no one was seeing you and I feel like that's why that language is so triggering.
Absolutely.
So for the parents listening right now, what is the m what you would say the absolute first
simplest step a parent listening can take to open the door to conversation with their kids about this, even if they feel completely unqualified to have the discussion.
Get qualified.
Is what I want to say.
I know it's not tangible for everybody.
But small steps even for there.
Follow an account, read a book.
Yeah.
Podcast, whatever you want to do.
But I think having kids be exposed would be my next.
Yeah, don't like keep them away from No, have books with multiple
Kids in it, some able-bodied, some disabled, different sexualities, different races, like just diverse characters, stories, TV shows, same thing.
Have these conversations
from that, like use that as a spark to have those conversations.
I think if kids are exposed to it, they understand it, it's not this elephant in the room that they have never seen
a wheelchair before, you know, show them different kinds of wheelchair.
Like show them different give opportunities for them to see these things.
Yeah.
I think that would be my first tangible tool to starting those conversations
while simultaneously doing your own work.
Yeah.
And I I know that's something that isn't easy to do, but I think that's the real answer.
Right.
Which is that you you kinda have to do your own work to be able to to have those conversations.
Yeah.
If you want them to be effective
It kind of comes from that.
Right.
And when you say your own work, like can you give an example of what that would look like?
Yeah, I would turn inward about what you know about disability, stories that you've heard
what your understanding is, where your biases might be, and then I would focus on hearing from disabled people of all kinds.
Like listening.
following stories, whatever it is, just to get that exposure so you can actually explore those things and then listen to them.
If they say this is wrong.
Be like, okay, like for that particular person, this is wrong.
What might that mean for other people?
And how could I make sure that they feel supported?
And the more you hear from people, I think the more you understand it.
And that just comes from exposure.
But we our society's very limited exposure and it's getting better, but like for a lot of people they've never encountered anyone with a disability.
And so you have to seek it out, unfortunately.
Yeah
Well, it's almost like I think about being on social media, you're just like inundated with so much information too about all everything.
So it's it's an extra it's an additional challenge to again see content from disabled people and at the same time learn about everything else.
And like we have an election in Canada and making sure you're educated on that and
But there's some really great politicians that are disabled.
Hear what they have to say.
We're there.
And we're not necessarily on the front page.
Right.
But we're there.
And I think you just have to put in that little bit of extra searching to to find them and hear from them.
So we were talking about
it not being the elephant in the room.
Yeah.
To be honest, I feel like kids are often more blunt though, and like we'll just state just Which is my favorite thing in the world.
I love that.
Our girls will immediately say, Brooklyn, you're in a chair.
I'm like
they will just state what is obvious to everyone, right?
They're not they're not blind to it.
So how can parents handle
these moments with their kids.
Because I feel like some parents again will feel kinda awkward about it.
Like it doesn't bother I wouldn't say it bothers us 'cause that's just how kids are.
They notice literally everything.
Are you talking about like public
Yeah, just being out in public and like seeing maybe someone with like the what is it, the not the crutch I guess crutches with cerebral cerebral palsy.
Like because we've seen that before.
How do you have a constructive conversation with your child when they maybe call something out?
If I'm in public, let's say with my kid, and then they see you in a chair, the kid, and then they go, Mommy, why is that person in a chair?
And they're like pointing at obviously you here.
I'm sure this happens to you all the time.
Well how do you hope a parent is gonna respond in that scenario?
Do you want them to be like let's ask?
Or do you want them to say we'll talk about it later?
So
I hate the shushing.
I don't like when parents shush children.
Totally.
I don't think that's productive.
They're curious.
Yeah, shut down their curiosity.
Right?
Kids are supposed to be curious.
Yep.
That's what they need.
Personally, I love kids.
So it's my favorite thing in the world when kids come up to me in public and ask me questions 'cause they're absurd questions.
Yeah.
First of all.
Like they're hilarious.
How do you get in bed?
Oh yep.
Sleep in that chair?
That's a great question.
And I'm like, you know what?
I haven't heard that one yet.
Like are usually gonna why are you in here
what's going on, like what's wrong with you, which isn't really endearing one 'cause they just they're so sweet.
Yeah.
Right?
They're just like, What's wrong with you?
Why are you in there?
But sometimes they're just really funny questions.
And I think for me, I personally, because I like kids and talking about disability is something I'm really passionate about
I'm okay with them asking questions.
I will sit there and answer all other questions in the world, even if it's at an inconvenient time.
I think when a parent is in that situation, they're often embarrassed by what's going on.
And they want to shut it down as fast as possible.
Yeah.
Because it's uncomfortable.
So they will either shh shh shh and like take their cause.
We don't point.
We don't we don't ask questions like we
It's like shutting down that curiosity.
I don't think that's super helpful for the kid.
And it also for me too.
I'm just like, okay.
Like, I'm happy to talk to them.
Like
Like d like is it so tabio that I'm tabio at Taco Dio?
Like is this kind of an internal issue there?
And I always think it's like
Sometimes parents respond as if like you don't realize that you're in a wheelchair.
Which don't remind her.
Don't remind me of the same thing.
You know what I mean?
Yeah.
That's what it feels like.
Yeah, fair.
And so I would say avoid treading it down
Cause need to be curious.
Yeah.
I would also say, and this is gonna be a ramble, so join me.
I encourage questions.
I need to preface that not everybody who's disabled wants to answer questions, nor is it their job to answer questions.
So you're kind of teetering a line of like, maybe you could ask see if the do you want to ask if they can answer questions?
Oh, like just me maybe you answer the question for them if they're like, What is that?
You can say, That's a wheelchair.
Yeah.
And just kind of answer their own question for them.
But I think
The issue that most people have is they're like, well, we want the person to answer the question.
Cause they come from this intent of like, well, you should you're the person with the loved experience, you should be able to tell me and tell the child what's going on, not me.
Mm-hmm.
But then it's like if someone's running late.
Yeah, right.
You know, they're just out doing their life.
Yeah, they're not on
It's not their job.
Yeah, no, totally.
But also I'm the leader and I'm gonna be able to answer those questions for you to some degree.
Yeah.
And like I like what you said too about sometimes for kids it's just a factual answer.
Just a quick answer.
Like instead of shushing, just be like if they say what is that?
Yeah, it's a wheelchair
Most kids are okay with that.
Yeah.
And that's it.
That's all it goes.
Like your child is gonna do so much better if you just factually just say, yeah, she's in a a wheelchair
That's how she gets around.
That's her legs.
You know, she uses a wheelchair.
Just factual and then kids like, oh okay.
And then off you go
But if you shush it, now all of a sudden you've made it this thing, right?
Like now I can't say it.
Now, oh there's something there.
And like this is where our biases and stigmas kind of form from.
And for me, I always in those situations, because I know how hard it is for parents
I myself will often interject and just be like, Hi, like I'll wave at the kid.
And if they like engage, it'll be like, Do you have any questions?
Like have you seen this?
Do you like the chair?
Like whatever it is.
And that kinda I can see you sometimes parents just go, Oh, thank God.
Like they have this immediate like, oh, relax now.
Yeah.
Like we don't have to worry about it
But not everybody wants to do that or sh has to.
Yeah.
It's my choice to do that.
But I would say definitely not everybody feels the same way and that's okay too.
You can come to the game.
Yeah.
Totally
You can read read them, see if they're gonna engage.
Yeah.
You can usually gauge if they're are interested in having that conversation or not.
Yeah.
I think that makes sense.
Looking back at your own childhood and journey.
What's one conversation about disability you wish an adult had started with you or handled differently?
I'm sure there's a bunch, but Oh my gosh.
That's a hard one.
It's weird, I don't remember a lot of conversations about disposition, which I think is interesting, cause you would assume
that those would be like the hotspot in my memory.
And it was just your life though, so it's just kind of a morphs together.
Like it just was a repetitive conversation.
It wasn't like a one time sit-down.
It was very gradual.
My parents, I think, did a really good job navigating that.
I do remember when I was probably seven or eight when religion entered the picture
And I remember having a conversation with my parents of like, I think I was upset in my room and I was just like, I don't understand.
Like if God's supposed to be helping everyone, like, why is this so unfair and
My parents, I love that they were dishonest and they're like, We don't know.
Like we do not know.
Mm-hmm.
We have no answer for you
But we're here.
We'll help with whatever we need, but they were never in like a fix it mode.
Yeah.
Which I think was really something I needed as a kid.
And I think a lot of people don't get that, which is unfortunate, because I think that's like the power, which is something you talk about constantly on Nurtured First, just being that leader.
And being the person that your kids come to, you might not be able to fix the problem or the situation or the feelings, but you can be with them throughout it.
Yeah, that's safe presence for them.
Yep.
She's just like in the room, right?
Like she's your your safety net, right?
She did a lot.
And I don't think I really understand until even now
fully how much effort she put in, especially with like the school board and the medical stuff, like the amount of advocacy that she had to do.
that I saw and then all the stuff I didn't see.
Mm-hmm.
Yeah.
Really hard for me to like really understand how much that tired her out.
And
just how much energy that cost her.
Yeah, it's probably just now that you're like the age that she would have been, right?
Mm-hmm.
When she was having you and everything, it's like you start to see things from a different lens the older you get.
Yeah.
Yeah.
For sure.
Which makes sense.
Yeah.
It's been an interesting understanding.
Because I don't think I understood because you're you're experiencing it as a kid.
And I know you've had this conversation a lot, Scott, with like
your own childhood and then seeing the girls at certain ages and going, Wait, this happened to me when I was their age.
Yep.
And it's a weird conceptualization because when you're a kid
you just experience it.
But now as an adult, I'm like, oh, you know, I was six when this happened, or oh, I was eight when this happened.
And I understand how hard that must have been.
And I can understand that differently than when I was in it
'Cause for when I was in it I was just going through it.
It didn't and your brain was probably not able to wasn't developed enough to comprehend
Everything that was happening at that point either, but now it's not.
And that's the the thing about like childhood, right?
Like it stays with us, like even though we are not identifying, this is wounding me, this is hurting me.
I'm losing
You know, the joy that I used to have or whatever, you don't identify that in the moment, but your body does.
Yeah.
And then it's not till later that you can look back and say, Oh, okay.
So that's why that was so hard for me.
That's why I'm still struggling with this.
Especially when you like even like with our girls, right?
Like your aunt or your aunt, you see the girls like so you see them at the different ages and you're like
Oh, okay.
Yeah.
It does make it more real for sure.
Hmm.
It gives it like a bit of more conceptualizing.
Yeah, there's additional context that also all of a sudden builds in your mind about your own life.
Yeah.
And I feel like my twenties was like surviving.
Yeah.
And like kind of healing.
Like I now I feel like in my thirties, all of my therapy has been like going back to childhood and figuring that out more in depth.
not just like surface level surviving, but like digging into the nitty-gritties.
Yeah, I think that makes sense.
I mean in your twenties
You're finally like You're moving out.
You're on your own, right?
You're all of a sudden trying to become an adult after you were just you were literally just a kid.
It's logistical.
Yeah.
And once you're in your thirties, you're you've had like
Let's say roughly a decade of experience of being an adult on your own doing your own stuff.
And then it gives you time that time to start reflecting on.
That was the hardest part of my like hitting the thirties for me too, is like I thought I had done a lot of deeper work.
Yeah, me too.
And I was like, Yeah, I got it.
Like I feel like I figured a lot of this stuff out.
Then it was just like, Nope.
Just kidding.
Just kidding.
If
If parents listening could change just one thing, to start with one thing about how they approach discussing disability with their kids, what would you want that one initial change to be
I don't even know how to phrase that, but try to keep disability neutral.
It's not good or bad, it just is.
Yeah.
And I think that's something that is
hard to do, but I think just keeping it very factual and very simple with your kids.
Yeah.
It doesn't need to be a complex thing.
It doesn't need to be a big, big
ordeal.
It can just be very simple and you can just point things out without having like a certain spin on it.
I think just keeping things tactual would be helpful.
So like wheelchairs are for this.
Some people can't see whatever it is.
Some people use a cochlear implant, like whatever that conversation is.
Just naming is like no different than like this person wears glasses
Yeah.
Like it's a tool.
It's fine.
It doesn't have to be a big conversation or it doesn't have to say, oh, like they must struggle to do this and they must struggle to like it.
Don't overcomplicate it.
Don't overcomplicate it.
To be honest, all of that to me sounds very condescending if you add anything more than just the factual information.
They just this is the situation, this is the way it is.
And if they ask as they get older, you know, when there's more environmental, I would focus more on the environment.
Of like, yeah, like, yeah, they there's a step there.
Wouldn't that be nice if it was a ramp?
Shouldn't they make more ramps?
They should totally make more ramps.
Like oh this door doesn't have a button.
Hmm.
That might be tricky for someone.
And I think that that's a good idea.
Yeah.
It's an option, right?
Like it happens a lot.
And I think for you, even I've had
tons of conversations of you with you around how you see that in more and more with strollers.
Yeah.
Because all of a sudden you have to go into places, you have to go over like bumpy terrain.
There's no ramp no ramp.
And you're trying to navigate.
I remember calling you one day.
I was like in a a store, like a dollar store or something like that.
I had a kid walking and then I had the stroller and no button to get into the store.
get into the store, the aisles are so thin, like so narrow that I could barely push the stroller through.
Then there was stuff all in the way and like I couldn't
So I'm like stuck in there.
I can't get through with the stroller and I called you and I'm like, I'm so mad for you right now.
Like this is just me with the stroller and I can just turn around and go the other way, right?
But this is the kind of stuff that you're dealing with every day.
All the time.
Yeah
All the time.
Should uh what are those things that were on used to be on the front of trains?
You should just install one of those and you're willing to do that.
Oh this is Scott installing something again.
A plow.
Yeah, a plow.
It it was meant for moving cattle or something off the train trains, right?
Yeah.
I think just but those are the situations where it's like that's why universal design and accessible design works for everybody.
And so it makes no sense in my brain why you build stairs right next to a ramp when you just make a whole ramp.
Right
Right.
Like there's no reason for it to be extra.
Just make it universal design where everyone can get in and it's fine.
Even logically it doesn't work.
Yeah.
Yeah.
Well and that's probably because the designers are not They're not thinking.
Yeah, they're they're thinking about their own lived experience and they're not thinking.
Yeah, they're like, oh nice stairs.
And I'm like, but why why?
Just make it a ramp.
Be done.
Everyone can get in
Like this seems easy.
Yeah, right.
In my brain.
And so like even pointing that out with your older kids, like if they see situations, even if you have a stroller
It's like, oh wow, this is so hard to get in.
Hmm.
Like this must be tricky for other moms or people using chairs or people using rockers.
Like I always bring that stuff up to the kids and and they start to notice it too.
Like
It's even like being friends with you.
It's like you start to notice simple things like where's the ramp to get down into the parking lot?
Oh, there's only one ramp.
from the sidewalk to get down into the parking lot and it's on the other side of the parking lot.
So now I have to walk all the way over there in order to get down.
And then all the way back through a parking lot with traffic.
Yeah.
Mm-hmm.
And like some places like Montreal have like no decent sidewalks to even We did Montreal two years ago.
Oh, I remember.
worst city I've ever been in.
Yeah.
Yeah.
The curbs are not curbs.
They're like a foot.
A foot high.
And I'm like, how is anyone supposed to get off this?
There was so much navigation and like huge potholes and it was just really not in built well for anyone with any kind of device.
Yeah, and I I think parents like or anyone doesn't just have to be a parent.
We can start to notice these things, right?
Just start to even notice.
Like you're on a walk.
Try to imagine what it would be like to always have to look for the ramp down.
Yeah.
And to always have to look for a sidewalk and to wonder why is the sidewalk so bumpy and why Yeah, what are these bumps on the edge too?
Like when if you have a crosswalk, right?
Like you have the yellow chunk of concrete with the bumps, describe why that might be there.
You can hear the little ding when you press the button and it says to go.
I don't know.
That's for someone that's blind.
What's the reason for those yellow bumps?
Blind people have no idea.
Say I did not know.
And then if you press the button to cross the street, you might hear the ding ding ding.
Yes.
Or whatever, that's like to let them know that they're safe to go forward and
Like there's all of these little things.
And so parents like even if you feel like you're not being exposed to disability in your day-to-day, you are.
It's everywhere.
So it's just taking that time to really just notice it.
Like even just go for a walk and and you'll start to notice these things
Well, there are things that are barriers or things that are there to make things more accessible.
And even that, it's that's all conversation starters that you can have with your own.
At the crosswalk.
Yeah, for blind blind folks, yeah.
And they use echolocation.
Yeah, right.
So that's I can see that.
Exactly what it's for.
Yeah.
Yeah
What is the biggest misconception about disability that you believe fuels parental anxiety around these conversations?
Oh, that we're gonna be mad if you ask the wrong question.
Yeah.
Or that we're unhappy.
And miserable.
Because we ask conversation or just in general?
Just in general.
I think there's a huge misconception that disabled people are grumpy and mean and miserable because their lives are terrible and they're horrible.
If they're grumpy, maybe it's just because they're being condescended to.
Yeah.
And that the world isn't built for them.
Yeah.
And they kinda have a right to be upset about it and that it's not them being ungrateful for any tiny little morsel of
accessibility.
Right.
Yeah.
That they shouldn't, you know.
It's hard.
Yeah, you don't want to be miserable, but also like the world's really hard.
And the world's not built for you.
Mm-hmm.
And so how do you get through and not be frustrated?
Yeah.
It's gonna be there.
And not everybody has the tools or the access to understanding how to do like how to handle those emotions.
Yeah.
Mm-hmm
is not easy.
That would be one of my biggest ones.
Yeah.
I think that's fair.
Okay.
Makes sense.
Finally, what is the most important thing that we haven't asked you about?
So if there's something else, what is what is something that we've been missing in this conversation that we haven't asked about?
I would say so I think in terms of disability, the majority of the conversation is surrounding
how to talk to able-bodied kids about disability.
There are disabled kids that need conversations about disability.
And there are disabled parents who need conversations about disability.
that don't exist.
There's not a lot of support or understanding of how to help disabled parents and disabled kids.
It's often focused on a non-disabled lens of how to approach the conversation.
And I think there needs to be more conversation around the actual experience for kids and parents in general.
Right?
Like we're we're talking about accessibility and stuff.
What about an accessible playground where a parent can't take their kid?
Yeah.
Because the parent's disabled.
Oh.
What does that look like?
You know, there's a lot of different perspectives and I think they're all important perspectives, but I think just making that a conversation as well, just to note for people that there's also
a lot of kids that need these conversations just as much and a lot of parents that also need these conversations in the same way.
Absolutely.
Yeah, and even yeah, our conversation today, right?
We focus on one piece of it.
We didn't get to those uh And there's a million there's no way there's so many pieces we could get to.
Yeah.
Right?
Like we there's a few things we're like, oh that's a whole other count that's a whole other conversation.
And this is another one that's
And we should have you back and we should be talking about that too.
But if there is a disabled parent listening or a parent of a disabled child listening
Is there any message or I I think some of the things that we've covered today are really applicable, but is there any message that you would want to send to them?
Just as there's a lot of other people dealing with the same struggle, that they're not alone
'Cause I think it's a very isolating experience.
And I say that from a point of view where I grew up with no other people disabilities really until my
late teens did I actually have a lot of interaction and that's only when I started really developing an identity, developing a self-understanding of my experience and figuring out how that integrated
I would say prior to that, it was a very like exceptional circumstance of like it was this thing
that was here, but it wasn't like an integral part of who I was at that age.
I feel like that started once I started understanding other people having community
learning more about literature and disability justice and all kinds of things.
That's when it really started to like flourish.
Yep.
And I think
people need that.
They need that community and they need that understanding.
Yeah, that makes sense.
And I think for parents too who have disabilities or for parents of disabled kids.
There are great communities out there.
Credible communities.
Like I've seen that for you, like as you've gotten more connected to your communities, like it's really cool to see
And that sense like of everything we talked about, belonging, being seen, community.
And so that's something that practically they could do too is like to seek that out.
Absolutely.
And I think that's something that's a beautiful part of
The internet?
Mm-hmm.
Yep.
Yeah.
There's good and bad, but there is good.
We look even my mom thirty years ago, my parents.
When they got diagnosed, they were handed a pamphlet.
Here you go.
Here's a pamphlet.
One contact of who you could p possibly talk to.
Mm-hmm.
And good luck.
Whereas now
There's groups, there's community support, there's Zoom, there's conferences, there's all of these things where you can connect with people with similar lived experience that like
even now I talk to my parents, like they will wish they had access to that.
They will wish that they were able to see this whole other like possible future, which was not presented to them at the time
Yep.
It didn't exist.
It was like phone calls with someone four hours away.
With kids at different ages and
different stages in all these things.
Like it wasn't as helpful like my parents felt like they had to go through a lot of it themselves.
And I feel like that's not
Thankfully that's not the reality as much anymore because there's so much connection online.
I think that's been a really beautiful benefit of the internet.
Most of my friends are states and Canada wide, like they're all over
But you can talk to them any minute of any day.
And you can say like, Hey, are you going through this too?
Like Yeah.
This happened.
Like even last week my wheelchair broke.
I so many people messaging me like, Hey, like I saw like this happening, like oh my god, mine did this last week.
Like it's just like a lot more comforting, connecting.
There's like solidarity in the community that just doesn't never existed when I was younger.
I feel like you must be able it must be easier then to also advocate for change.
Mm-hmm.
Because then it's you're not dealing with anything in isolation.
There's a lot more avenues to protest and
to get creative about things.
I think disabled people are probably one of the most creative groups of people I've ever met.
And there's good reason for that.
They've had to solve a lot of problems with limited or certain resources that are not technically traditional and they have to figure out how to make that work
And so I think that comes from an advocacy point of view as well, where you can get creative and figure out other ways of getting stuff done, which is great.
Yeah.
Definitely a powerful part of the internet.
Yeah.
Yeah, so there is good out there stuff.
There is good.
I know it's a scary place otherwise.
Yeah.
It's good.
Nice.
Well thanks Brooke.
Yeah, thanks for being here.
Happy to be here.
Answering all the time.
We could talk about it forever.
So we'll have you back and we'll we'll talk about one of the other pieces we didn't get to today.
But thank you.
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