Hey, how are you? And if you say you're fine, I'm gonna
assume you mean, like, the acronym. Freaked out, insecure, neurotic,
and emotional. So,
have you heard the term life quake? Well, in this podcast,
we talk about life quakes, those unpredictable seismic shifts that,
in time, lead to profound personal growth and empowerment.
Here you can expect heartfelt stories that reveal both the joy and the
discomfort of unexpected change. And I think you're gonna like it
here. My name is Shawn,
and this is something shifted. Today's story belongs to Kaylee.
I'm not always okay with being a disabled person.
The epic journey that I've been on is Saying I am disabled and not
I am disabled, but that's next.
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Today's story is a little different to some of our previous episodes.
We generally meet guests post life quick who've got the benefit of
hindsight, and we learn how that big thing has changed the direction of
their life the way that they think. But we meet them on stable ground.
Not everyone is on the other side of an event that has changed the
way that they see how they fit into the world, and sometimes we
meet someone that is mid quake. I live in an earthquake.
Um, I like I say that really positively. Like. Right.
Like, for those who don't know, I, I have cerebral palsy and I'm,
I'm a lifelong disabled person. I'm a full time wheelchair user.
So that in itself, I think can be a lot of work for others when
they engage with me. Um, but. I've done a lot of work to reach
a point where my. I think that my disability is a
huge deal to me, and I think it should be. That's Kaley.
She has a disability, and she's a major swiftie.
I love Taylor Swift so much. It's very much a part of my
personality. Kaley is the only person I know that
experienced the Eras tour live twice. I did. I died. It was amazing.
I like, like really, truly like a life changing experience.
I feel like 62,000 people had a healing experience and like,
it sounds insane to say that, but, Um, hearing experience when 60,000
people can say if the patriarchy. That's a powerful moment. I get it.
Taylor Swift has been the soundtrack to most of our adventures with Zoe.
Folklore hooked us, and since then we've enjoyed the back catalogue,
the new albums, and of course, all of Taylor's versions.
The song that I'm genuinely obsessed with at this moment is,
um, Who's Afraid of the Old Me? That sounds like, where can I go?
Take over the world now. Thank you. Listening to Kaylee speak about
this song. It's more than just lyrics set
to music. The song is an anthem that she
identifies with. But who could possibly be afraid
of Kaylee? You might ask? I'm a very sarcastic human,
so I'm accidentally sarcastic a lot at the time.
Also on purpose, I use it like you can use it.
I really kind of like making people feel uncomfortable.
Like it's fun because it's really easy to make a nondisabled person
uncomfortable. It's really easy. I always feel sensitive. So like.
I find it interesting that we are taught to adjust how we
speak about ourselves for the comfort of other people,
and we don't need to. She's right. You know, we shouldn't feel like we
need to adjust how we speak about ourselves for the comfort of others.
But it is one of the hardest lessons we had to learn as parents of a
child with special needs ourselves. Because for years we crafted
sound bites. These sort of. Understandable chunks of
information to make our lives palatable for others.
But when your life becomes a series of unpredictable seismic shifts.
Who has time for making others feel more comfortable?
So right off the bat, let's not try and make the life quake that
Katie lives in more palatable. Let's call it what it is.
Cerebral palsy. Kayleigh is a life long disabled
person, a full time wheelchair user. And for Kayleigh.
Being conscious of the words we use matters a great deal.
I use disabled person and differently abled.
Um, I fully believe that everybody has
the right to choose whatever label they want to use for themselves.
Um, I think we need to approach it the way that we approach gender
pronouns. What are your pronouns? Perfectly acceptable to ask people
that. What's your disability label? I think that's perfectly acceptable.
I can't speak for Kaylee's parents, but as parents of a special needs
child ourselves, we've had to deal with many what's wrong with hers?
And we've even received a shames after sharing Zoe's diagnosis,
when the fact of the matter is, there's nothing wrong with Zoe.
She is fully herself, and you can't accidentally
remind us of her disabilities by acknowledging her differences.
But you can be mindful of the words you use when doing so.
I have one older sister and she has a wonderful husband and they have
three beautiful babies, and I'm the only aunt that that they have.
So that's fun because they they've grown up with disability
and it's like, not it's not that big of a deal to them.
And it's always interesting to watch them.
And when they were little like, ah, my hands are interesting and
and not typical. And so they kind of label my
hands as aunt hands. On hands. If you were here, you would
understand what Kaylee means by this. Kaylee and I are sitting alone.
Her straight brown hair is tied back in a ponytail.
I must say, I'm surprised at how sleek her motorized wheelchair is,
especially compared to Zoe's manual one.
Kaylee has this broad smile and her eyes sparkle with a wicked
sense of humor. And then there are her aunt hands.
When Kaylee was younger, she tried the prescribed interventions,
like using splints to change the shape of her hands.
But by the age of 12, Katie decided she could do more without them.
So here she is, splint free and able to knit like it's nobody's business.
But I think what's complicated, and what I think is an interesting
journey for people who have to figure out what the labels are.
We label everything, but we do. Disability doesn't need to be
excluded from that very normal Process.
We label this as a table so we know that it's a table,
and so that other people know that we're talking about the same thing.
So I think it's important that we label things.
We just need to claim the labels and not not be like we're trying
to be apologetic about it and to add to them.
And I think that the a big journey that I've been on is saying I am
disabled and not I am disabled, but. Kayleigh is disabled,
and she started the Kaylie campaign at the age of nine to raise funds
for her own motorized wheelchair. Kayleigh won an International
Children's Peace Prize in 2011, and she was awarded the Social
Activism Medal by the Nobel Peace laureate in 2012.
Today, the Kaylee campaign is a social justice organization that
serves more than 7000 beneficiaries every year.
Kaylee is disabled, and she completed a master's in human rights law.
She's been to the top of Kilimanjaro. Kaylee has completed the comrades,
published a book, and Kayleigh has seen the eras tour live twice.
I try to not always be the best in the space.
But at least I know myself sometimes. I feel like there's so many,
so many things that people put onto us as disabled people.
Um, I think that's why it was really hard for me to be like.
My disability is shit sometimes because that messaging is so,
so deeply driven by society that we have to be so grateful for
every opportunity that we get to exist in a space.
And I can't get mad that you didn't know how mad at me here,
or that, like, you didn't give me a man because
you assume that I can't read it, that I can't make a decision,
or like you are shook when I pay the bill at the restaurant.
Because how are disabled people earning money? What do you mean?
Where are you getting this from? The right to choose your
disability label matters. Being asked the right questions
matters and being seen as a whole human with access to the
full range of humanness. The good and the bad matters.
I like just because you're in a wheelchair doesn't mean you can't
be an asshole, or like it doesn't mean that you can't be a bigot,
like, because you are a member of an oppressed group. Like.
That stuff is like, like invasive. And it can get to anybody.
And that's what people are not all the same.
Like, I don't believe that there is any kind of.
Coherent, um, within the disabled community. And I'll come to you.
Quick reminder that our newsletter three, two,
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Back to the story. Where were we? Oh yes.
Kayleigh was just saying that she doesn't believe there's any kind
of coherence within the disabled community in South Africa.
Coincidentally, the lyrics of that Taylor Swift song Kayleigh
likes so much say you caged me and then you called me crazy.
I am what I am because you trained me. So who's afraid of me?
I think as a lot of non-disabled person, there's a lot that you
learn accidentally and you internalize accidentally. So.
It took me a long time. Um, a lot of therapy.
Um, to my therapist. Works really hard because I'm a
problem. Um, we're stubborn over here.
Side note Kaylee tends to refer to herself as the royal we,
which is perfectly acceptable for a queen to do.
So it took us a long time to reach a point where I could say,
like, just say the sentence. I'm not always okay with being a
disabled person. Right. Because you put out this persona of,
like, I'm the positive solution, finding a disabled person who's
trying to not be an issue to somebody like, I want to be in this space.
I don't want you to be uncomfortable in this space with me.
Um, so I make it. Not a big deal. It's fine. We'll find a solution.
Um, sometimes it's shit. And sometimes it's really, really
hard. And it's okay to say that. And to just say that and to not have
it be. Sometimes it's really hard. But on the brighter side, like,
you don't always feel like there's another side.
Kelly has reminded me that we seem to expect people to turn
their life quakes into lemonade. It makes us more comfortable if
we can tell ourselves that it's going to be fine. They'll be fine.
I would be a multi-millionaire if I had a brand.
For every time someone responded to Zoe's epilepsy diagnosis by saying
something they think is optimistic, like Proteas cricketer Jonty
Rhodes has epilepsy. And look what he did with this life.
There isn't always a brighter side and you don't get to tell
me about sad to tell us about the silver linings.
Instead of dealing with our own discomfort, our own fears and
meeting us right where we are. I think that that's the
beautiful thing about about. Living openly with your disability.
Um, because, like, we're not friends all the time, and I have had to
find ways of of navigating that, but also making space for it.
So like, I'm having a hard body So if I can send three emails,
then awesome. Then awesome. And on those days we celebrate
what we can do. But on the days when things get
tough and the walls start to close in on us, we need to ask for help.
However hard it might be. I'm just like this is easier and
more efficient if you help me. And so I think in that way,
we're also kind of indoctrinated into believing that in order to be a
productive and respectable person in society, we have to do things all
by ourselves, with no assistance and completely independently.
We're not designed to be independent. I'm very grateful that I have
people in my life who have come in and made me, like,
broken my brain a little bit. Um, I think that's such a gift
that people give to often. They don't mean to do it.
They just exist that way. And we need to figure out how to
receive them better. Um, people are capable of not
being assholes, like, right. Like people are capable of
accommodating your needs and also recognizing the weakness of
your disability without it being the whole conversation.
People are capable of showing up for you with what you need them to.
Every day you are experiencing like microaggressions And, um,
we learned to live with them, and we compartmentalize.
And we can, like, we can deal with those things.
And sometimes sometimes we make a bit of a quick.
But, um, I believe that, like, you don't need places to be safe spaces.
You need people to be safe spaces. In my experience, it's been far
easier to be a safe space for someone then we tend to think sometimes we
can get so caught up in needing to have the right words lined up, or
worried about not having the answers that the other person might need.
Not being able to make it better that we get so distracted with
getting there. Being there right that we never
get around to actually just showing up for them.
I have a friend who we like ridiculously,
decided that I would go stay with him and while the rest for six days.
He had never, like, fully taken care of me and anytime, I mean even
when we were together. So he knew. But he'd never been, like,
responsible for supporting my needs. Um, in that way.
And they were like, oh, it'll be fun. It'll be fun.
No, I think we'll figure it out. And, um, I.
Uh, we did have to be very open and communicate.
We're ready for that conversation. Um, I was like, you just have to let
me know when you're overwhelmed. And then we can adjust.
We can, like, figure it out. We can do different things.
We can minimize these things. And we're constantly told as disabled
people to minimize and mask our disabilities and how big of an impact
they have on whatever we're doing. So I think it was like day three
or something of the trip. Then something happened and he was
facing away from me and he was like, Fred, I'm overwhelmed.
Then he said a thing that broke my back.
And we've been friends for like over a decade.
And so he knows all my baggage and complexes.
So, uh, he said to me, I don't actually want to tell
you that I'm overwhelmed because I don't fully Really feel that.
And he also knows that I am a bit of a burden complex, but,
um, I'm ready for that. You know, I'm ready to be a problem.
I'm prepared. Um. It's okay. I'm used to being a problem to
people. It's fine. This is what took me out. He said.
I also don't want to tell you that because I actually feel quite
privileged to have you trust me enough to have this experience with
me. What not? My whole life I have. I have very supportive people.
I have a phenomenal support network. I do everything that I need to,
I want to do. Never in my entire life had
anyone said to me that supporting my 18,000 years in a day is a
privilege to them. Broke me. I'm worthy of you investing your
energy in me. I'm not taking it from you.
You're giving it freely and you want to be here.
All of that stuff is huge. And all the little things are huge.
And that is what we need when we live with disabilities. Love.
Kindness, patience, just like everybody else.
And people that are safe spaces. When the world is not. I love that.
I have somewhat unintentionally, um, Created like a, uh,
a web of activists around myself, um, where they know how I feel about
things so that when things go down, they can react in a way that aligns
with how I feel about things. Um, because I don't believe that.
It's like if you don't have the experience fully, that you don't
have the right to speak about it. Um, I think that's bullshit.
And I think that that's very shortsighted and egotistical.
Like, my disability is mine and nobody else's. Um. That's insane.
My disability is mine. It lives in my body, but it affects
every single human in my life. So me being like, I'm sorry.
You're not allowed to have a reaction to this insane thing
that's happening because you don't live in a wheelchair every day.
That's bonkers and nonsense and, like,
limiting the possibility of advocacy. I hope you will break someone's brain
with kindness today, with witnessing by bearing with and learn to
receive people who show up for you. Like Kaley Mycroft has while the
ground is shaking. We don't have to do this alone,
nor do we have to do it afraid.
Thank you for listening to this episode of Something Shifted.
We make this podcast as a labor of love, and if you love it, please
share it with friends and family. Leave a five star rating on your
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newsletter! 321 shift which gives you three
things for your mind. Two things for your body and one
thing for your soul. Plus a few surprises like
giveaways along the way. Many thanks to my executive producer,
ru. And of course, to you for
believing in possibilities. My name is Sean and this is
something shifted.