"Whose afraid of little old me?" Chaeli Mycroft has cerebral palsy.

WEBVTT - This file has cues.

00:00:00.120 --> 00:00:04.880
Hey, how are you?
And if you say you're fine, I'm gonna

00:00:04.920 --> 00:00:10.160
assume you mean, like, the acronym.
Freaked out, insecure, neurotic,

00:00:10.840 --> 00:00:13.880
and emotional.
So,

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have you heard the term life quake?
Well, in this podcast,

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we talk about life quakes, those
unpredictable seismic shifts that,

00:00:21.920 --> 00:00:25.920
in time, lead to profound
personal growth and empowerment.

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Here you can expect heartfelt stories
that reveal both the joy and the

00:00:31.840 --> 00:00:38.200
discomfort of unexpected change.
And I think you're gonna like it

00:00:38.200 --> 00:00:40.960
here.
My name is Shawn,

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and this is something shifted.
Today's story belongs to Kaylee.

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I'm not always okay with being a
disabled person.

00:00:55.680 --> 00:01:05.030
The epic journey that I've been on
is Saying I am disabled and not

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I am disabled, but that's next.

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I know you're busy and planning
what your family will eat isn't

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always top of mind.
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up some new skills because of
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Do it today.

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Today's story is a little different
to some of our previous episodes.

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We generally meet guests post life
quick who've got the benefit of

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hindsight, and we learn how that big
thing has changed the direction of

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their life the way that they think.
But we meet them on stable ground.

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Not everyone is on the other side
of an event that has changed the

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way that they see how they fit
into the world, and sometimes we

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meet someone that is mid quake.
I live in an earthquake.

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Um, I like I say that really
positively. Like. Right.

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Like, for those who don't know,
I, I have cerebral palsy and I'm,

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I'm a lifelong disabled person.
I'm a full time wheelchair user.

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So that in itself, I think can
be a lot of work for others when

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they engage with me. Um, but.
I've done a lot of work to reach

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a point where my.
I think that my disability is a

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huge deal to me, and I think it
should be. That's Kaley.

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She has a disability,
and she's a major swiftie.

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I love Taylor Swift so much.
It's very much a part of my

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personality.
Kaley is the only person I know that

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experienced the Eras tour live twice.
I did. I died. It was amazing.

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I like, like really, truly like
a life changing experience.

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I feel like 62,000 people had a
healing experience and like,

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it sounds insane to say that, but,
Um, hearing experience when 60,000

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people can say if the patriarchy.
That's a powerful moment. I get it.

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Taylor Swift has been the soundtrack
to most of our adventures with Zoe.

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Folklore hooked us, and since then
we've enjoyed the back catalogue,

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the new albums, and of course,
all of Taylor's versions.

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The song that I'm genuinely
obsessed with at this moment is,

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um, Who's Afraid of the Old Me?
That sounds like, where can I go?

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Take over the world now. Thank you.
Listening to Kaylee speak about

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this song.
It's more than just lyrics set

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to music.
The song is an anthem that she

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identifies with.
But who could possibly be afraid

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of Kaylee? You might ask?
I'm a very sarcastic human,

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so I'm accidentally sarcastic a
lot at the time.

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Also on purpose,
I use it like you can use it.

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I really kind of like making
people feel uncomfortable.

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Like it's fun because it's really
easy to make a nondisabled person

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uncomfortable. It's really easy.
I always feel sensitive. So like.

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I find it interesting that we
are taught to adjust how we

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speak about ourselves for the
comfort of other people,

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and we don't need to. She's right.
You know, we shouldn't feel like we

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need to adjust how we speak about
ourselves for the comfort of others.

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But it is one of the hardest lessons
we had to learn as parents of a

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child with special needs ourselves.
Because for years we crafted

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sound bites. These sort of.
Understandable chunks of

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information to make our lives
palatable for others.

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But when your life becomes a series
of unpredictable seismic shifts.

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Who has time for making others
feel more comfortable?

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So right off the bat, let's not
try and make the life quake that

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Katie lives in more palatable.
Let's call it what it is.

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Cerebral palsy.
Kayleigh is a life long disabled

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person, a full time wheelchair user.
And for Kayleigh.

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Being conscious of the words we
use matters a great deal.

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I use disabled person and
differently abled.

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Um,
I fully believe that everybody has

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the right to choose whatever label
they want to use for themselves.

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Um, I think we need to approach it
the way that we approach gender

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pronouns. What are your pronouns?
Perfectly acceptable to ask people

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that. What's your disability label?
I think that's perfectly acceptable.

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I can't speak for Kaylee's parents,
but as parents of a special needs

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child ourselves, we've had to deal
with many what's wrong with hers?

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And we've even received a shames
after sharing Zoe's diagnosis,

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when the fact of the matter is,
there's nothing wrong with Zoe.

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She is fully herself,
and you can't accidentally

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remind us of her disabilities by
acknowledging her differences.

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But you can be mindful of the
words you use when doing so.

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I have one older sister and she has
a wonderful husband and they have

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three beautiful babies, and I'm
the only aunt that that they have.

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So that's fun because they
they've grown up with disability

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and it's like, not it's not that
big of a deal to them.

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And it's always interesting to
watch them.

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And when they were little like,
ah, my hands are interesting and

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and not typical.
And so they kind of label my

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hands as aunt hands. On hands.
If you were here, you would

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understand what Kaylee means by this.
Kaylee and I are sitting alone.

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Her straight brown hair is tied
back in a ponytail.

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I must say, I'm surprised at how
sleek her motorized wheelchair is,

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especially compared to Zoe's
manual one.

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Kaylee has this broad smile and
her eyes sparkle with a wicked

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sense of humor.
And then there are her aunt hands.

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When Kaylee was younger, she tried
the prescribed interventions,

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like using splints to change the
shape of her hands.

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But by the age of 12, Katie decided
she could do more without them.

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So here she is, splint free and able
to knit like it's nobody's business.

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But I think what's complicated,
and what I think is an interesting

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journey for people who have to
figure out what the labels are.

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We label everything, but we do.
Disability doesn't need to be

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excluded from that very normal
Process.

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We label this as a table so we
know that it's a table,

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and so that other people know that
we're talking about the same thing.

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So I think it's important that
we label things.

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We just need to claim the labels
and not not be like we're trying

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to be apologetic about it and to
add to them.

00:11:18.160 --> 00:11:28.080
And I think that the a big journey
that I've been on is saying I am

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disabled and not I am disabled, but.
Kayleigh is disabled,

00:11:36.680 --> 00:11:40.600
and she started the Kaylie campaign
at the age of nine to raise funds

00:11:40.600 --> 00:11:45.480
for her own motorized wheelchair.
Kayleigh won an International

00:11:45.480 --> 00:11:49.600
Children's Peace Prize in 2011,
and she was awarded the Social

00:11:49.600 --> 00:11:53.320
Activism Medal by the Nobel
Peace laureate in 2012.

00:11:54.040 --> 00:11:58.480
Today, the Kaylee campaign is a
social justice organization that

00:11:58.480 --> 00:12:02.440
serves more than 7000
beneficiaries every year.

00:12:03.720 --> 00:12:09.160
Kaylee is disabled, and she completed
a master's in human rights law.

00:12:09.600 --> 00:12:15.000
She's been to the top of Kilimanjaro.
Kaylee has completed the comrades,

00:12:15.320 --> 00:12:22.520
published a book, and Kayleigh has
seen the eras tour live twice.

00:12:25.440 --> 00:12:33.280
I try to not always be the best
in the space.

00:12:35.480 --> 00:12:41.400
But at least I know myself sometimes.
I feel like there's so many,

00:12:41.440 --> 00:12:46.640
so many things that people put
onto us as disabled people.

00:12:47.240 --> 00:12:51.750
Um, I think that's why it was
really hard for me to be like.

00:12:52.190 --> 00:12:57.870
My disability is shit sometimes
because that messaging is so,

00:12:59.110 --> 00:13:05.710
so deeply driven by society that
we have to be so grateful for

00:13:05.710 --> 00:13:09.510
every opportunity that we get to
exist in a space.

00:13:09.950 --> 00:13:14.590
And I can't get mad that you
didn't know how mad at me here,

00:13:14.630 --> 00:13:18.390
or that, like,
you didn't give me a man because

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you assume that I can't read it,
that I can't make a decision,

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or like you are shook when I pay
the bill at the restaurant.

00:13:29.670 --> 00:13:33.790
Because how are disabled people
earning money? What do you mean?

00:13:33.790 --> 00:13:39.150
Where are you getting this from?
The right to choose your

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disability label matters.
Being asked the right questions

00:13:45.230 --> 00:13:50.620
matters and being seen as a
whole human with access to the

00:13:50.620 --> 00:13:56.660
full range of humanness.
The good and the bad matters.

00:13:57.940 --> 00:14:02.980
I like just because you're in a
wheelchair doesn't mean you can't

00:14:03.020 --> 00:14:08.460
be an asshole, or like it doesn't
mean that you can't be a bigot,

00:14:08.500 --> 00:14:12.500
like, because you are a member
of an oppressed group. Like.

00:14:14.620 --> 00:14:21.660
That stuff is like, like invasive.
And it can get to anybody.

00:14:22.100 --> 00:14:25.140
And that's what people are not
all the same.

00:14:25.500 --> 00:14:31.260
Like, I don't believe that there
is any kind of.

00:14:33.380 --> 00:14:39.460
Coherent, um, within the disabled
community. And I'll come to you.

00:14:42.660 --> 00:14:45.460
Quick reminder that our
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00:15:12.820 --> 00:15:16.780
Back to the story.
Where were we? Oh yes.

00:15:18.380 --> 00:15:21.380
Kayleigh was just saying that she
doesn't believe there's any kind

00:15:21.380 --> 00:15:24.460
of coherence within the disabled
community in South Africa.

00:15:24.980 --> 00:15:28.460
Coincidentally, the lyrics of
that Taylor Swift song Kayleigh

00:15:28.460 --> 00:15:33.700
likes so much say you caged me
and then you called me crazy.

00:15:34.300 --> 00:15:40.900
I am what I am because you trained
me. So who's afraid of me?

00:15:41.780 --> 00:15:47.060
I think as a lot of non-disabled
person, there's a lot that you

00:15:47.610 --> 00:15:52.890
learn accidentally and you
internalize accidentally. So.

00:15:52.930 --> 00:15:58.290
It took me a long time.
Um, a lot of therapy.

00:15:58.730 --> 00:16:04.090
Um, to my therapist.
Works really hard because I'm a

00:16:04.090 --> 00:16:09.530
problem.
Um, we're stubborn over here.

00:16:10.410 --> 00:16:15.290
Side note Kaylee tends to refer
to herself as the royal we,

00:16:15.690 --> 00:16:20.290
which is perfectly acceptable
for a queen to do.

00:16:22.370 --> 00:16:26.930
So it took us a long time to
reach a point where I could say,

00:16:27.610 --> 00:16:33.730
like, just say the sentence.
I'm not always okay with being a

00:16:33.730 --> 00:16:40.330
disabled person. Right.
Because you put out this persona of,

00:16:40.330 --> 00:16:44.810
like, I'm the positive solution,
finding a disabled person who's

00:16:44.810 --> 00:16:49.640
trying to not be an issue to somebody
like, I want to be in this space.

00:16:49.640 --> 00:16:53.240
I don't want you to be uncomfortable
in this space with me.

00:16:53.880 --> 00:16:58.840
Um, so I make it. Not a big deal.
It's fine. We'll find a solution.

00:16:59.440 --> 00:17:06.600
Um, sometimes it's shit.
And sometimes it's really, really

00:17:06.600 --> 00:17:14.640
hard. And it's okay to say that.
And to just say that and to not have

00:17:14.640 --> 00:17:20.960
it be. Sometimes it's really hard.
But on the brighter side, like,

00:17:20.960 --> 00:17:23.520
you don't always feel like
there's another side.

00:17:24.640 --> 00:17:29.240
Kelly has reminded me that we
seem to expect people to turn

00:17:29.240 --> 00:17:34.160
their life quakes into lemonade.
It makes us more comfortable if

00:17:34.160 --> 00:17:38.280
we can tell ourselves that it's
going to be fine. They'll be fine.

00:17:39.360 --> 00:17:42.440
I would be a multi-millionaire
if I had a brand.

00:17:42.440 --> 00:17:47.000
For every time someone responded to
Zoe's epilepsy diagnosis by saying

00:17:47.000 --> 00:17:51.080
something they think is optimistic,
like Proteas cricketer Jonty

00:17:51.080 --> 00:17:53.880
Rhodes has epilepsy.
And look what he did with this life.

00:17:55.240 --> 00:18:02.080
There isn't always a brighter
side and you don't get to tell

00:18:02.120 --> 00:18:08.320
me about sad to tell us about
the silver linings.

00:18:08.840 --> 00:18:14.400
Instead of dealing with our own
discomfort, our own fears and

00:18:14.400 --> 00:18:21.080
meeting us right where we are.
I think that that's the

00:18:21.080 --> 00:18:28.400
beautiful thing about about.
Living openly with your disability.

00:18:29.240 --> 00:18:36.520
Um, because, like, we're not friends
all the time, and I have had to

00:18:36.520 --> 00:18:41.920
find ways of of navigating that,
but also making space for it.

00:18:41.920 --> 00:18:50.030
So like, I'm having a hard body
So if I can send three emails,

00:18:50.790 --> 00:18:55.390
then awesome. Then awesome.
And on those days we celebrate

00:18:55.390 --> 00:18:58.870
what we can do.
But on the days when things get

00:18:58.910 --> 00:19:04.950
tough and the walls start to close
in on us, we need to ask for help.

00:19:05.510 --> 00:19:11.070
However hard it might be.
I'm just like this is easier and

00:19:11.070 --> 00:19:15.670
more efficient if you help me.
And so I think in that way,

00:19:15.670 --> 00:19:22.190
we're also kind of indoctrinated
into believing that in order to be a

00:19:22.190 --> 00:19:28.510
productive and respectable person in
society, we have to do things all

00:19:28.510 --> 00:19:33.270
by ourselves, with no assistance
and completely independently.

00:19:33.310 --> 00:19:38.590
We're not designed to be independent.
I'm very grateful that I have

00:19:38.990 --> 00:19:45.980
people in my life who have come
in and made me, like,

00:19:46.020 --> 00:19:52.580
broken my brain a little bit.
Um, I think that's such a gift

00:19:52.780 --> 00:19:56.260
that people give to often.
They don't mean to do it.

00:19:56.300 --> 00:20:02.460
They just exist that way.
And we need to figure out how to

00:20:02.460 --> 00:20:10.940
receive them better.
Um, people are capable of not

00:20:10.940 --> 00:20:17.860
being assholes, like, right.
Like people are capable of

00:20:17.860 --> 00:20:21.700
accommodating your needs and
also recognizing the weakness of

00:20:21.700 --> 00:20:25.100
your disability without it being
the whole conversation.

00:20:25.540 --> 00:20:33.940
People are capable of showing up
for you with what you need them to.

00:20:35.140 --> 00:20:46.020
Every day you are experiencing
like microaggressions And, um,

00:20:46.380 --> 00:20:50.260
we learned to live with them,
and we compartmentalize.

00:20:50.260 --> 00:20:53.900
And we can, like,
we can deal with those things.

00:20:53.900 --> 00:20:57.580
And sometimes sometimes we make
a bit of a quick.

00:20:57.700 --> 00:21:06.140
But, um, I believe that, like, you
don't need places to be safe spaces.

00:21:06.140 --> 00:21:15.060
You need people to be safe spaces.
In my experience, it's been far

00:21:15.180 --> 00:21:21.780
easier to be a safe space for someone
then we tend to think sometimes we

00:21:21.780 --> 00:21:27.580
can get so caught up in needing to
have the right words lined up, or

00:21:28.140 --> 00:21:32.460
worried about not having the answers
that the other person might need.

00:21:32.860 --> 00:21:38.220
Not being able to make it better
that we get so distracted with

00:21:38.260 --> 00:21:42.140
getting there.
Being there right that we never

00:21:42.250 --> 00:21:45.690
get around to actually just
showing up for them.

00:21:48.410 --> 00:21:53.890
I have a friend who we like
ridiculously,

00:21:53.890 --> 00:21:58.970
decided that I would go stay with him
and while the rest for six days.

00:22:01.130 --> 00:22:10.210
He had never, like, fully taken
care of me and anytime, I mean even

00:22:10.210 --> 00:22:16.130
when we were together. So he knew.
But he'd never been, like,

00:22:16.170 --> 00:22:21.170
responsible for supporting my needs.
Um, in that way.

00:22:21.690 --> 00:22:24.570
And they were like, oh,
it'll be fun. It'll be fun.

00:22:24.610 --> 00:22:29.930
No, I think we'll figure it out.
And, um, I.

00:22:32.010 --> 00:22:35.890
Uh, we did have to be very open
and communicate.

00:22:36.050 --> 00:22:41.560
We're ready for that conversation.
Um, I was like, you just have to let

00:22:41.560 --> 00:22:45.200
me know when you're overwhelmed.
And then we can adjust.

00:22:45.200 --> 00:22:47.880
We can, like, figure it out.
We can do different things.

00:22:47.880 --> 00:22:52.880
We can minimize these things.
And we're constantly told as disabled

00:22:52.880 --> 00:22:58.080
people to minimize and mask our
disabilities and how big of an impact

00:22:58.080 --> 00:23:04.520
they have on whatever we're doing.
So I think it was like day three

00:23:04.520 --> 00:23:09.760
or something of the trip.
Then something happened and he was

00:23:09.760 --> 00:23:13.760
facing away from me and he was like,
Fred, I'm overwhelmed.

00:23:14.200 --> 00:23:18.640
Then he said a thing that broke
my back.

00:23:18.640 --> 00:23:22.000
And we've been friends for like
over a decade.

00:23:22.120 --> 00:23:27.680
And so he knows all my baggage
and complexes.

00:23:28.400 --> 00:23:35.400
So, uh, he said to me,
I don't actually want to tell

00:23:35.400 --> 00:23:41.350
you that I'm overwhelmed because
I don't fully Really feel that.

00:23:41.510 --> 00:23:46.390
And he also knows that I am a
bit of a burden complex, but,

00:23:46.550 --> 00:23:50.510
um, I'm ready for that.
You know, I'm ready to be a problem.

00:23:50.550 --> 00:23:55.270
I'm prepared. Um. It's okay.
I'm used to being a problem to

00:23:55.270 --> 00:24:00.470
people. It's fine.
This is what took me out. He said.

00:24:01.470 --> 00:24:06.350
I also don't want to tell you that
because I actually feel quite

00:24:06.390 --> 00:24:14.990
privileged to have you trust me
enough to have this experience with

00:24:14.990 --> 00:24:25.270
me. What not? My whole life I have.
I have very supportive people.

00:24:25.310 --> 00:24:30.710
I have a phenomenal support network.
I do everything that I need to,

00:24:30.710 --> 00:24:35.390
I want to do.
Never in my entire life had

00:24:35.390 --> 00:24:43.110
anyone said to me that supporting
my 18,000 years in a day is a

00:24:43.110 --> 00:24:52.390
privilege to them. Broke me.
I'm worthy of you investing your

00:24:52.390 --> 00:24:56.110
energy in me.
I'm not taking it from you.

00:24:56.430 --> 00:25:00.790
You're giving it freely and you
want to be here.

00:25:01.150 --> 00:25:08.150
All of that stuff is huge.
And all the little things are huge.

00:25:09.390 --> 00:25:14.710
And that is what we need when we
live with disabilities. Love.

00:25:15.350 --> 00:25:22.110
Kindness, patience,
just like everybody else.

00:25:23.470 --> 00:25:30.830
And people that are safe spaces.
When the world is not. I love that.

00:25:30.990 --> 00:25:43.020
I have somewhat unintentionally,
um, Created like a, uh,

00:25:43.060 --> 00:25:50.780
a web of activists around myself, um,
where they know how I feel about

00:25:50.780 --> 00:25:59.780
things so that when things go down,
they can react in a way that aligns

00:25:59.780 --> 00:26:05.100
with how I feel about things.
Um, because I don't believe that.

00:26:05.100 --> 00:26:11.620
It's like if you don't have the
experience fully, that you don't

00:26:11.620 --> 00:26:17.140
have the right to speak about it.
Um, I think that's bullshit.

00:26:17.820 --> 00:26:23.540
And I think that that's very
shortsighted and egotistical.

00:26:24.260 --> 00:26:32.340
Like, my disability is mine and
nobody else's. Um. That's insane.

00:26:32.700 --> 00:26:36.340
My disability is mine.
It lives in my body, but it affects

00:26:36.340 --> 00:26:41.330
every single human in my life.
So me being like, I'm sorry.

00:26:41.730 --> 00:26:46.010
You're not allowed to have a
reaction to this insane thing

00:26:46.010 --> 00:26:50.250
that's happening because you don't
live in a wheelchair every day.

00:26:51.490 --> 00:26:57.130
That's bonkers and nonsense and,
like,

00:26:57.170 --> 00:27:06.010
limiting the possibility of advocacy.
I hope you will break someone's brain

00:27:06.130 --> 00:27:13.410
with kindness today, with witnessing
by bearing with and learn to

00:27:13.410 --> 00:27:20.210
receive people who show up for you.
Like Kaley Mycroft has while the

00:27:20.210 --> 00:27:25.250
ground is shaking.
We don't have to do this alone,

00:27:26.770 --> 00:27:30.090
nor do we have to do it afraid.

00:27:35.570 --> 00:27:38.530
Thank you for listening to this
episode of Something Shifted.

00:27:39.010 --> 00:27:44.130
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321 shift which gives you three

00:28:09.450 --> 00:28:11.890
things for your mind.
Two things for your body and one

00:28:11.890 --> 00:28:15.690
thing for your soul.
Plus a few surprises like

00:28:15.690 --> 00:28:20.210
giveaways along the way.
Many thanks to my executive producer,

00:28:20.570 --> 00:28:23.050
ru.
And of course, to you for

00:28:23.050 --> 00:28:28.130
believing in possibilities.
My name is Sean and this is

00:28:28.570 --> 00:28:29.690
something shifted.