October 7, 2025 • 27 mins
This week on the show Simon and Andrew chat to the Honourable Dr Tony Buti MLA about his recent appearance at the Totally Lit festival in Fremantle, where he hosted a panel discussion on his book 'Alkira' written about his daughter with Cri-du-chat syndrome. The discussion delves into his personal experience as a father raising a child with Cri-du-chat, and the struggles Tony and his wife Mandy faced along the way.
Tony describes with great warmth and compassion the journey of heartbreak, resilience and joy; from discovering his daughter has this rare condition to the response & action taken by himself and his wife to ensure that their bright daughter has a fulfilling life. One of the aims of the book is to help challenge how we approach disability and move toward a more just and inclusive society for all.
We very much appreciated Tony coming in to talk with us; it was a moving and informative conversation.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:17):
Hello and welcome to In Plain Sight, a program where
we highlight people who are making a positive impact in
the community and disability sector.
S2 (00:25):
Shining a light on those who would be otherwise hidden
in plain sight.
S1 (00:29):
And it's a pleasure to bring you these stories on
a weekly basis with you here on Vision Australia Radio.
Hello and welcome to the program. How are you this week, Simon?
S2 (00:38):
I'm really great. Thanks, Andrew. It's good to be here,
as always is. And it's good to be presenting this program.
And we had a fabulous discussion with an author, which
we will hear all about shortly. And it's been great
to have all these discussions about all sorts of things
around literature the last few weeks, and we like to
keep that theme running again this week, because reading is
(01:02):
such a valuable thing to do, and it's good for
our health it is.
S1 (01:05):
This week's guest on the program is Tony butI, who
happens to be, on the one hand, he's the WA Attorney-General,
but he's also an author academic and he's written a
book about his daughter, Alkira.
S2 (01:19):
Yes, we had a great interview with Tony, butI, and
we talked about a session he did for the Totally
Lit Literature Festival that was held in Fremantle recently. And
that session that Tony did, which was an interview with
Gillian O'Shaughnessy, was recorded and that will be published on
Vision Australia Radio sometime in the future. So keep your
(01:41):
eyes and ears open for that. Folks, we'll let you
know when that will be coming up. It was a
great interview I had with Tony, and it did raise
some issues that are somewhat linked with the subject that
we're going to talk about now, which is when this
program goes to air, it is Mental Health Week, and
October 10th is World Mental Health Day, a day where
(02:04):
we recognize and give acknowledgment and awareness to the broad
ranging effects of mental ill health. Now, I want to
also say that we can have mental health that is
good mental health and mental health that is not so good,
bad mental health, which we refer to as ill health.
And for many of us in the disability world who
have a disability and impairment or a severe illness, it
(02:27):
can also lead to complications with our mental health. So
I wanted to acknowledge that. And and just to raise
that awareness and acknowledgement that if you are struggling with
mental health in any way, please reach out to your friends,
your family, the support agencies that are out there. And
(02:49):
if you don't have any issues with mental health, please
support those who do. And whilst it is Mental Health
Awareness Week, let's take some time out to find out
what that all means and what you can do to
help support people who have ill mental health. Tell us, Andrew,
what we are doing here in Perth to acknowledge this
(03:09):
Important date.
S1 (03:11):
One of the events happening here in Perth is the
WA mental Health Awards. And that's on Friday the 10th
of October, and there's a gala lunch at Beaumonde on
The Point in East Perth. And also keep an eye
out for any other community events in your local area
for World Mental Health Week, which is the 4th to
(03:31):
the 11th of October.
S2 (03:33):
That's right. Thank you for that, Andrew. It's good to
acknowledge these things and to try to show respect to
it and to get along and support local community events
that are happening in your area.
S1 (03:45):
And so here's your conversation that you had with Tony Booty.
S2 (03:52):
Hello. Welcome. This week we have a very special guest.
This week we are talking with the honorable Doctor Tony
Booty MLA, and we will be talking to him about
his representation at the Totally Lit Festival, to which we
were talking about recently, and I find it quite interesting
that contrasts of guests that we have on this program.
(04:13):
A few weeks ago, we had a budding new author
who's 12 years old, Lily. And this week we have
a very prestigious guest of a different nature who is
also a renowned author. And I'd like to welcome Tony
to the studio now. Hello, Tony.
S3 (04:28):
Hello, Simon. Great to be with you.
S2 (04:30):
Now, Tony. One of the reasons we've got you in
the studio today is the fact that you present it
at the Totally Lit Festival for literature, and you have
a book, and your book is all about your daughter, Alkira. Now, firstly,
I'd ask you to tell me the name of the
condition that Alkira was born with. Because it's quite a
tricky phrase.
S3 (04:51):
Yeah. So, um, it's a chromosomal abnormality, so it's called
Cru de char, which is French for cry of the cat.
So basically, um, the situation is that she's a deletion
on the fifth chromosome. And as a result of that deletion,
there's a number of genes that are missing. How many?
We don't know, but that's the condition.
S2 (05:14):
Now, your daughter Alkira is 32 now, is that right?
S3 (05:17):
She'll be 32 very shortly. In another month.
S2 (05:21):
Now, 32 years ago, it was a very different world
in so many aspects. And the way we looked at
people and treated people with a disability was very different. Firstly,
I'd like to ask you, what was it like back
then for yourself and your wife to be told that
your daughter has this condition?
S3 (05:43):
Yeah. Look, that's a really interesting question. Um, we weren't
we didn't know about our carer's condition until she was
two years of age. So we had two years in memory.
Some people would say two years of bliss because we
didn't know that she had this condition. We were concerned
because she. Her main concern was that she wasn't walking. And, um,
(06:05):
so that's why we took her to the doctors anyway.
Tests were done, etc. etc. and we found out about
this condition, which we had no idea what it was.
And the fact that when I asked a doctor at
the when he told us that she had this condition,
what's the prognosis? He said, do you really want to know?
And I said, well, I don't know if I do,
(06:27):
but I think we should. And he just picked up
a textbook and read out that, oh, she won't, um,
most likely won't have an intellectual age further than five
years of age. Um, and obviously that was an incredible
shock to hear. And, uh, we really didn't know much more, Simon,
(06:47):
about the condition or what to do. And then that
was the beginning of the the journey that we've had
for the last 30 years.
S2 (06:55):
Say again the name of the condition, please.
S3 (06:57):
Krutika.
S2 (06:58):
So it's called cat cry syndrome.
S3 (07:00):
Cry of the cat? Yes.
S2 (07:01):
So how does that appear with Akira?
S3 (07:05):
You know, that is one of the reasons I wrote
the book. That question is so hard to answer because
there's a wide variety. If people are diagnosed with this condition,
there's an incredible wide scope of how it's manifested, because
it depends on how many genes are deleted, what genes
are deleted, etcetera, etcetera. So when people ask me what's
(07:27):
our curious condition, you know, I can say create a chart,
but doesn't necessarily tell them what it is. So in
a general term it is it affects physical and intellectual development.
Now how severe and how that's manifested depends. The assessment
of our care is that she's high functioning, that the
the consequences for her have not been as severe in
(07:52):
the outward manifestation. Mhm. So she can, you know, she
can walk, you know, she's physically probably a little bit.
Well she's a bit weaker than as a result of
muscle tone. But she can, She can walk. She can run.
Not fast, but she can. And she's a very good swimmer. Uh, intellectually,
that is the thing that I find the most difficult
(08:13):
thing to characterize. Because it's really difficult. Because she. There's
no doubt she has learning difficulties. She has obsessions. Um,
you know, whether there's some autism there, we don't know. Uh,
but she can understand so much. And she could sit here, Simon,
with you, and she would probably know more. Well, I mean,
(08:34):
I'm making an assumption here. Maybe you're a great fan
of classical music. I don't know, but she would know
so much about classical music that the average person would
not know. She would know a lot more about politics
than the an average 32 year old person would know.
So yes, she had problems at school. She had she
has problems processing things, but she's also seems to be
(08:57):
quite intelligent. But if an IQ test was done, maybe
she wouldn't do very well. So it's really hard.
S2 (09:02):
You do strike a very important note there, Tony. That's
something we've talked about here on this program a number
of times, is that it's hard to box people into
certain categories. And, uh, people need to do that sometimes
to acquire the funding that they require to live their
daily lives. And it's quite a difficult situation.
S3 (09:25):
Very much so. And, um, you know, that's right. We
always need to characterize and bots people into certain, um, certain, um,
characteristics and certain assumptions. So I think the thing that
we've had to fight and our carers had to fight
is the immediate assumptions people make about her because she
has a so-called disability. Now, in the in, the severity
(09:49):
of disability is often determined by how society reacts to someone.
S2 (09:53):
Just picking up on that point, Tony, it's it's another
phrase that gets used a lot. That disability doesn't disable me.
It's the society and environment around me that makes me
feel disabled.
S3 (10:05):
Exactly right. For instance, if, for example, I use in
the book is when that, um, she was in grade
2 or 3, I think, at primary school, uh, going
into grade four, I think. And the teacher that was
allocated to her for that year decided that she could
(10:25):
not have alkira in her classroom because she was dealing
with matters at home and she couldn't deal with the
extra stress. Now my wife, Mandy, which is Akira's greatest champion, uh,
fought that and she did go into that classroom. And, um,
by the end of the year, the teacher wrote a
glowing report. She presented no problem. So certain teachers thought, oh,
(10:47):
Akira has a disability. She's going to be a problem
in my class. In fact, Akira was never a problem
in the class. It was actually other kids that have
behavior issues. Just naughty naughty that were more of a problem.
S1 (10:59):
You're listening to In Plain Sight on Vision Australia Radio
with Simon Cheng and me, Andrew Williams. Our guest this
week is Tony butI, who is the WA Attorney General
on the one hand, but also an author and academic,
and he's written a fascinating book about his daughter, Alkira.
And now it's back to Simon and Tony.
S2 (11:20):
That leads me into getting into why you wrote the book.
That was I think I saw it was published in 2021.
Is that.
S3 (11:28):
Right? Yeah, it's yeah, about 2021.
S2 (11:30):
Um, and I saw somewhere that one of the reasons
you wrote the book was to help enlighten the general
public about some of these issues that we're just talking
about now. Is that.
S3 (11:40):
Right? Yeah. Look, I think there's two main reasons I
wrote the book, and that decision wasn't taken lightly because
obviously I was dealing with Akira's privacy. Uh, one was
that it was just so hard to articulate who Alkira is,
so I thought, I'll try and write it. Secondly, Which
you just alluded to, Simon, was the fact that I
(12:01):
wanted to engage in a conversation with. Community about people
with disabilities. They are human beings, and we need to
we need to. Treat them as look at their capabilities
rather than disabilities. What can they do? And they can
do a lot more. Society allows them to do a
lot more.
S2 (12:19):
Now, as an established author who's won awards and so forth,
and you've done some biographies of some renowned people, how
different was it to write a book not only about
your daughter, but someone who is in close proximity to you,
knows living and can respond.
S3 (12:41):
And it's look, in one aspect, it's easier because the
research is easier because I've lived with Alkira. Yeah. Um, but, uh,
it also was was difficult, I think I, I mentioned
in the book that, you know, I thought and labored
over every word, every sentence, every paragraph, and thought really
carefully about whether this book should be written. Spoke to
(13:05):
our Ta, Mandy, our Kira's mum, my wife, and also
to our Kira. Now, Kira. Understood. Uh, Kira is aware
that she is different, but we are all different. Uh,
so she's aware. I mean, she came to the book launch.
She actually spoke at the book launch. Uh, so she's
aware of, uh, that she has a so-called disability. So, yeah. Look,
(13:26):
it was difficult, but I thought it was necessary to
engage in this conversation because Simon, unfortunately, still, disabilities is
not talked about enough. And there's not enough advocacy in this,
in this space.
S2 (13:40):
I'm glad you mentioned that, Toni. And without giving too
much praise and bragging about my work here, I get
feedback from people I know because of what I do,
which is giving a voice to those people who aren't
always heard and shining a light on those who aren't
always seen. And I find it a really rewarding experience
(14:01):
to be doing that. And I appreciate you doing what
you've done from your own personal perspective. Before this, did
you have any experience yourself with disability or impairment or
severe illness?
S3 (14:13):
Well, interestingly, when we were in Canberra and I was
a law student at Anu, Australian National University, Mandy, uh,
had a job. She was a former nurse. She had
a job actually for an NGO which looked after people
who had severe intellectual disabilities. So she used to take
(14:34):
them out to the community. And so I met a
couple of her, what they called clients. So that was
really my only experience in that aspect. Uh, so no,
I did not have I did not had wide experience.
So Akira has brought in a new experience and, uh,
into my life. So that's why I try not to be.
I look, I constantly get disappointed and frustrated by how
(14:57):
people think and react. Uh, talk about disabilities. I try
not to be too harsh though. Could I do one
day if I had not had that experience where I
would be? But it is just something that we've got
to keep pushing all the time. The system seems to
be developed to in regards to parents of people with
(15:18):
disability to make you fatigue, to basically say, well, I
just give up.
S2 (15:22):
It is a subject and a topic that I want
to discuss further. My dad suggested this, that we should
talk about the experience of parents of children with disability. Now,
I'd like to ask you, Tony, a really quite personal question,
and it might be covered in the book. I haven't
seen the book as yet. Now, Akira is the oldest
(15:42):
child in your family. You have three children. Once you
discovered that Akira had this condition, was there any hesitation
of having more children?
S3 (15:53):
Well, that's an interesting question, Simon, because we did not
know we already had our second child before we knew
about Alkira. But and this is really difficult I talk
about in the book and before we had our third child, though, uh,
because we'd already had the second child was born, um,
because we didn't know about Akira's condition till she was two. Yeah.
(16:16):
So the the her brother Paris was born about 20
months after alkira. Then there was like a four year
gap between the youngest one, which Tennessee. When we we
never hesitated about having children, but we did have the
amniocentesis when we had the third one. Now, that's a
difficult subject to talk about because why did we do that?
(16:38):
If we had found out that Tennessee, the fetus, had
a so-called abnormality, what would we have done? Um, now,
I often talk to Mandy about that. We aren't sure
that if we found there was a condition that we
would have then terminated the pregnancy, but Mandy just needed
to know.
S2 (16:57):
Mhm.
S3 (16:58):
And then the decision to be made. Yeah.
S2 (17:00):
Yeah. Well thank you for that. That's really enlightening because
I know that there are still those harsh comments and
thoughts that get thrown around in this discussion in the community,
especially nowadays, where everyone's quite harsh about everything.
S3 (17:15):
Yeah. Can I add to that, if you don't mind? Simon,
in the book I do spend some time on talking
about the Australian philosopher professor at Princeton University, Peter Singer.
This is a subject that's covered in the book, and
I actually had to delete some of it because it
was just going to become, uh, too, too big. Uh,
he's the one Peter Singer is this is this philosopher who, um,
(17:39):
basically advocates, uh, that disabled infants should be killed or
can be killed. And that's not a big issue, which
I just find, you know, appalling. But what I think
also is appalling that he's still lauded, he's still championed
if he comes to Australia. He's always wanted for radio,
TV interviews. He has public lectures. Now I just wonder
if Peter Singer advocated for the that children that were
(18:03):
born of a certain color, of a certain ethnic origin,
that they could be killed? How would society react? But
because you're talking about disability, there is criticism. But he's
actually still lauded and often lauded by the people on
my side of politics are left, which I find interesting
and disappointing.
S2 (18:22):
And Peter Singer is quite a contemporary author, very contemporary. Now,
you just mentioned your other children's names, Paris and Tennessee,
which are lovely names. Which made me wonder. Akira.
S3 (18:34):
Yeah, it's it's actually Aboriginal. I'm not Aboriginal, but it's, um,
it's actually, um, Aboriginal for Sky.
S2 (18:41):
Yes. Because once I saw your other children's names, I thought, oh,
is there a connection? Is there a place name as well?
S3 (18:47):
Yeah. Yeah. Uh, well, no, I mean, well, yeah. Paris
and Tennessee obviously are place names, but out here is
the sky, which is, uh, you know, I think appropriate
for Akira because she she brings us so much joy.
S2 (18:58):
Yes. Now, tell us about your connection with the literature
festival that's held in Fremantle.
S3 (19:04):
Yeah. Look, a great festival. Uh, it's been, uh, you know,
well received, uh, great. Uh, reception and responses and, um, yeah,
it's a new festival. And, um, I think, uh, the
more and more that we can have, uh, these festivals
that allow authors to come to discuss about their books,
but also about society and conversations is really important. Um, um,
(19:27):
you know, Fremantle is a great place, obviously, to hold
literary festival.
S2 (19:30):
So your session was held with Gillian astronomy?
S3 (19:33):
Yes.
S2 (19:33):
And you were talking to her about just about your book,
Akira or.
S3 (19:38):
Yeah, about about the book. But obviously as a result
of that book, we talked about issues, um, you know,
ethical issues. Uh, Peter Singer, for instance, um, how society
reacts to, uh, people with disabilities. What it's like being
a parent of a child with a disability.
S2 (19:53):
And I believe as an author, you've got another book
that's coming out.
S3 (19:56):
Well, well, actually, it just came out about two weeks ago. Um,
it's a book that I wrote on, uh, voluntary assisted dying,
which has some relationships here, uh, in some aspects to
the issue of disability. So it was, um, I was
in Parliament when we debated the legalising of voluntary assisted
dying back in 2019. And I'm one of these people
(20:19):
that believes significant historical events should be should be written
down and recorded for the general population to, uh, to, uh,
you know, understand. So that only came out two weeks ago.
S2 (20:31):
I'm fascinated. That's a great subject. And, um, and it
is a good thing to be talking about and, um,
we all should be enlightened into those types of situations. And,
you know, we are we do know that we have
an aging population. And I don't know my future, but
I'd like to have a hand in the way we
(20:52):
end up, I think. Um. I'm fascinated. Tony, just to
ask you another personal question, but a professional personal question.
Someone who has such a busy, professional role in what
you're doing currently and what you've done previously, how is
it you also have time to write these really detailed,
(21:12):
fascinating books? Yeah.
S3 (21:15):
Yeah.
S2 (21:15):
You must be passionate writer because you've done so many studies.
S3 (21:18):
That's right. Well, I mean, I was an academic for
a long period of time. So as an academic, I
did a lot of writing, which is part of the job.
But as I've now, I think, published 3 or 4
books while I've been in Parliament. It was different to
being on the backbench to being a minister. Uh, look,
I just leave, you know, I leave a life that
I try and organize. I, I get up very early
in the morning and, um, I just feel. I don't
(21:41):
know what I mean. I don't think I'm a good writer,
but I feel the need to write. Uh, you know,
I'd love to write a non-fiction. I'd like to write
a fictional book one day, but, uh, I just have
a lot of things I want to discuss with the
public about my views on XYZ or. And that's why
I write, but I actually, I actually enjoy the writing process.
It's hard, but I actually enjoy it.
S2 (22:02):
Was there ever did you ever consider write rather than
writing a non-fiction biography? To write it as a fictional,
to divorce yourself a little bit from the subject?
S3 (22:14):
Look, no I didn't. That was actually a method I
could have used. Uh, but no, in this case, I
just felt there was just. It could. It was just
so close, and I just I just wanted to express
myself as I saw it. But that obviously would have
been an avenue. There's a book in the in the
works that I am looking at using fictional characters to protect, um,
(22:37):
some reputations.
S2 (22:39):
Um, I wanted to, um, listen to your book being
vision impaired, and I couldn't find it online anywhere. So
I looked, searched on the Vision Australia library and they
didn't have it. So I requested that they upload your
book onto their system so their people will be in
touch with your people soon, I hope, and that will
get done and then we'll be able to share that. Also,
(23:00):
whilst I'm talking about that, in regards to your session
at the Fremantle Literature Festival, the festival, because Vision Australia
are media partners with the festival, we will be broadcasting
a recorded session of that of that session that Tony
did in Fremantle at the Maritime Museum. Now, Tony, looking
into stuff about you online and so forth. You do
(23:22):
seem to have a connection with Fremantle, but you're the
state minister representing the seat of Armadale, which is, for
those who don't know, is a long way from Fremantle.
What's your connection with Fremantle?
S3 (23:33):
Well, you're right, I've never lived in Fremantle, although we are.
I was actually born in Collie, moved up to Armadale
when I was nine. Uh, we did have some close
family friends that lived in Spearwood and we often go
to Fremantle. I think the basis of my connection to free. Well,
there's a couple actually. I'm a mad, passionate South Fremantle supporter.
S2 (23:51):
Yes.
S3 (23:51):
All that. And also I met my wife in Fremantle
at Fremantle Hospital. So that's another connection. And her mother,
my my wife is an English immigrant. And her mother's
first job was, um, setting up daycare at child care
Services in Fremantle. And I just love the area. So yeah,
while I have not physically lived there, I have these
(24:13):
sort of connections through my footy connections and the fact
that I met my wife there.
S2 (24:17):
And your Italian heritage, is that right? That's right. So hence.
S3 (24:20):
Fremantle, Spearwood and.
S2 (24:22):
Fremantle. Yeah. So that's, um, fantastic. And I'm really pleased
that you've written this book and has it got much
attention and feedback?
S3 (24:33):
Well, it did at the time. I mean, it was published.
And look, uh, kudos to my publishers, uh, scholarly Australian
scholarly publications Applications in Melbourne, because I did send it
to a few publishers who weren't interested, which I think
you know, might be the way I wrote it, but
it does. It is interesting. Maybe they're just not interested
in this subject. So kudos to Australian scholarly publications or
(24:56):
publishing service. But there are a smaller outfit, so they
didn't have the, uh, the large marketing arm that some
of these, uh, renowned publishers do. Uh, but people that
have read it have, uh, yeah, it has, um, awakened, uh,
thoughts in their minds or. No, I shouldn't say that.
It stimulated them to think about this subject, which I
(25:17):
which is fantastic.
S2 (25:18):
And so the book is a paperback book.
S3 (25:20):
Yeah, it's a paperback book.
S2 (25:21):
And it's still available.
S3 (25:23):
Oh, look, there's very limited copies of some being sold
at the at the festival. Uh, I think the publishers
may be out of stock. I mean, I am thinking,
Simon maybe doing an update in a couple of years time.
S2 (25:34):
Oh I see, yes.
S3 (25:35):
Yeah. So I think I'll probably do something like that.
S2 (25:37):
Looking back and looking forward and seeing how the stories progressed.
It could be a good sequel.
S3 (25:44):
It could be, and maybe Alkira could participate more fully
in this. She does consider herself the co-author of the book.
So yeah, we'll see. But yeah, I do need to
do a follow up.
S2 (25:54):
So is the book available online or in E copies?
You know, people can do that. And any audio book versions.
S3 (26:03):
Well, there is not an audio book version, but I
think we need to look at that. Look, I think
the publishers still have a few copies that can be ordered,
but you know, if there's a if there's a mammoth
increase in demand, it's very easy to reprint. So we
just reprint it.
S2 (26:17):
Well, our time has run out for us today. Tony,
and I really appreciate you speaking with us. It's been
an honor to meet you. And I know, considering your work,
you must be very busy man and what you've been
up to at the moment. It's been fascinating. I do
look forward to being able to look at this book
in more detail very soon. Um, and hint to the
(26:39):
Vision Australia people. Please get that, uh, up and running.
That'd be great. Um, and thanks very much, Tony, for
coming in and speaking with us. And good luck for
the future.
S3 (26:48):
Thank you. Simon. It's been really enjoyable. Thank you.
S2 (26:51):
That's all we have today, folks. Thanks for joining us
once again on Vision Australia Radio. Look forward to speaking
with you next time. Bye for now.
S1 (27:07):
That concludes in Plain Sight for this week. Join us
at the same time next week on Vision Australia Radio,
VA radio Digital and online at VA Radio.com. You can
also listen on demand by searching for In Plain Sight
by Vision Australia Radio. Wherever you get your podcasts, or
ask your smart device to play in Plain sight by
(27:29):
Vision Australia Radio. Thanks for listening.
S4 (27:32):
Thank you.
Hello and welcome to In Plain Sight, a program where
we highlight people who are making a positive impact in
the community and disability sector.
S2 (00:25):
Shining a light on those who would be otherwise hidden
in plain sight.
S1 (00:29):
And it's a pleasure to bring you these stories on
a weekly basis with you here on Vision Australia Radio.
Hello and welcome to the program. How are you this week, Simon?
S2 (00:38):
I'm really great. Thanks, Andrew. It's good to be here,
as always is. And it's good to be presenting this program.
And we had a fabulous discussion with an author, which
we will hear all about shortly. And it's been great
to have all these discussions about all sorts of things
around literature the last few weeks, and we like to
keep that theme running again this week, because reading is
(01:02):
such a valuable thing to do, and it's good for
our health it is.
S1 (01:05):
This week's guest on the program is Tony butI, who
happens to be, on the one hand, he's the WA Attorney-General,
but he's also an author academic and he's written a
book about his daughter, Alkira.
S2 (01:19):
Yes, we had a great interview with Tony, butI, and
we talked about a session he did for the Totally
Lit Literature Festival that was held in Fremantle recently. And
that session that Tony did, which was an interview with
Gillian O'Shaughnessy, was recorded and that will be published on
Vision Australia Radio sometime in the future. So keep your
(01:41):
eyes and ears open for that. Folks, we'll let you
know when that will be coming up. It was a
great interview I had with Tony, and it did raise
some issues that are somewhat linked with the subject that
we're going to talk about now, which is when this
program goes to air, it is Mental Health Week, and
October 10th is World Mental Health Day, a day where
(02:04):
we recognize and give acknowledgment and awareness to the broad
ranging effects of mental ill health. Now, I want to
also say that we can have mental health that is
good mental health and mental health that is not so good,
bad mental health, which we refer to as ill health.
And for many of us in the disability world who
have a disability and impairment or a severe illness, it
(02:27):
can also lead to complications with our mental health. So
I wanted to acknowledge that. And and just to raise
that awareness and acknowledgement that if you are struggling with
mental health in any way, please reach out to your friends,
your family, the support agencies that are out there. And
(02:49):
if you don't have any issues with mental health, please
support those who do. And whilst it is Mental Health
Awareness Week, let's take some time out to find out
what that all means and what you can do to
help support people who have ill mental health. Tell us, Andrew,
what we are doing here in Perth to acknowledge this
(03:09):
Important date.
S1 (03:11):
One of the events happening here in Perth is the
WA mental Health Awards. And that's on Friday the 10th
of October, and there's a gala lunch at Beaumonde on
The Point in East Perth. And also keep an eye
out for any other community events in your local area
for World Mental Health Week, which is the 4th to
(03:31):
the 11th of October.
S2 (03:33):
That's right. Thank you for that, Andrew. It's good to
acknowledge these things and to try to show respect to
it and to get along and support local community events
that are happening in your area.
S1 (03:45):
And so here's your conversation that you had with Tony Booty.
S2 (03:52):
Hello. Welcome. This week we have a very special guest.
This week we are talking with the honorable Doctor Tony
Booty MLA, and we will be talking to him about
his representation at the Totally Lit Festival, to which we
were talking about recently, and I find it quite interesting
that contrasts of guests that we have on this program.
(04:13):
A few weeks ago, we had a budding new author
who's 12 years old, Lily. And this week we have
a very prestigious guest of a different nature who is
also a renowned author. And I'd like to welcome Tony
to the studio now. Hello, Tony.
S3 (04:28):
Hello, Simon. Great to be with you.
S2 (04:30):
Now, Tony. One of the reasons we've got you in
the studio today is the fact that you present it
at the Totally Lit Festival for literature, and you have
a book, and your book is all about your daughter, Alkira. Now, firstly,
I'd ask you to tell me the name of the
condition that Alkira was born with. Because it's quite a
tricky phrase.
S3 (04:51):
Yeah. So, um, it's a chromosomal abnormality, so it's called
Cru de char, which is French for cry of the cat.
So basically, um, the situation is that she's a deletion
on the fifth chromosome. And as a result of that deletion,
there's a number of genes that are missing. How many?
We don't know, but that's the condition.
S2 (05:14):
Now, your daughter Alkira is 32 now, is that right?
S3 (05:17):
She'll be 32 very shortly. In another month.
S2 (05:21):
Now, 32 years ago, it was a very different world
in so many aspects. And the way we looked at
people and treated people with a disability was very different. Firstly,
I'd like to ask you, what was it like back
then for yourself and your wife to be told that
your daughter has this condition?
S3 (05:43):
Yeah. Look, that's a really interesting question. Um, we weren't
we didn't know about our carer's condition until she was
two years of age. So we had two years in memory.
Some people would say two years of bliss because we
didn't know that she had this condition. We were concerned
because she. Her main concern was that she wasn't walking. And, um,
(06:05):
so that's why we took her to the doctors anyway.
Tests were done, etc. etc. and we found out about
this condition, which we had no idea what it was.
And the fact that when I asked a doctor at
the when he told us that she had this condition,
what's the prognosis? He said, do you really want to know?
And I said, well, I don't know if I do,
(06:27):
but I think we should. And he just picked up
a textbook and read out that, oh, she won't, um,
most likely won't have an intellectual age further than five
years of age. Um, and obviously that was an incredible
shock to hear. And, uh, we really didn't know much more, Simon,
(06:47):
about the condition or what to do. And then that
was the beginning of the the journey that we've had
for the last 30 years.
S2 (06:55):
Say again the name of the condition, please.
S3 (06:57):
Krutika.
S2 (06:58):
So it's called cat cry syndrome.
S3 (07:00):
Cry of the cat? Yes.
S2 (07:01):
So how does that appear with Akira?
S3 (07:05):
You know, that is one of the reasons I wrote
the book. That question is so hard to answer because
there's a wide variety. If people are diagnosed with this condition,
there's an incredible wide scope of how it's manifested, because
it depends on how many genes are deleted, what genes
are deleted, etcetera, etcetera. So when people ask me what's
(07:27):
our curious condition, you know, I can say create a chart,
but doesn't necessarily tell them what it is. So in
a general term it is it affects physical and intellectual development.
Now how severe and how that's manifested depends. The assessment
of our care is that she's high functioning, that the
the consequences for her have not been as severe in
(07:52):
the outward manifestation. Mhm. So she can, you know, she
can walk, you know, she's physically probably a little bit.
Well she's a bit weaker than as a result of
muscle tone. But she can, She can walk. She can run.
Not fast, but she can. And she's a very good swimmer. Uh, intellectually,
that is the thing that I find the most difficult
(08:13):
thing to characterize. Because it's really difficult. Because she. There's
no doubt she has learning difficulties. She has obsessions. Um,
you know, whether there's some autism there, we don't know. Uh,
but she can understand so much. And she could sit here, Simon,
with you, and she would probably know more. Well, I mean,
(08:34):
I'm making an assumption here. Maybe you're a great fan
of classical music. I don't know, but she would know
so much about classical music that the average person would
not know. She would know a lot more about politics
than the an average 32 year old person would know.
So yes, she had problems at school. She had she
has problems processing things, but she's also seems to be
(08:57):
quite intelligent. But if an IQ test was done, maybe
she wouldn't do very well. So it's really hard.
S2 (09:02):
You do strike a very important note there, Tony. That's
something we've talked about here on this program a number
of times, is that it's hard to box people into
certain categories. And, uh, people need to do that sometimes
to acquire the funding that they require to live their
daily lives. And it's quite a difficult situation.
S3 (09:25):
Very much so. And, um, you know, that's right. We
always need to characterize and bots people into certain, um, certain, um,
characteristics and certain assumptions. So I think the thing that
we've had to fight and our carers had to fight
is the immediate assumptions people make about her because she
has a so-called disability. Now, in the in, the severity
(09:49):
of disability is often determined by how society reacts to someone.
S2 (09:53):
Just picking up on that point, Tony, it's it's another
phrase that gets used a lot. That disability doesn't disable me.
It's the society and environment around me that makes me
feel disabled.
S3 (10:05):
Exactly right. For instance, if, for example, I use in
the book is when that, um, she was in grade
2 or 3, I think, at primary school, uh, going
into grade four, I think. And the teacher that was
allocated to her for that year decided that she could
(10:25):
not have alkira in her classroom because she was dealing
with matters at home and she couldn't deal with the
extra stress. Now my wife, Mandy, which is Akira's greatest champion, uh,
fought that and she did go into that classroom. And, um,
by the end of the year, the teacher wrote a
glowing report. She presented no problem. So certain teachers thought, oh,
(10:47):
Akira has a disability. She's going to be a problem
in my class. In fact, Akira was never a problem
in the class. It was actually other kids that have
behavior issues. Just naughty naughty that were more of a problem.
S1 (10:59):
You're listening to In Plain Sight on Vision Australia Radio
with Simon Cheng and me, Andrew Williams. Our guest this
week is Tony butI, who is the WA Attorney General
on the one hand, but also an author and academic,
and he's written a fascinating book about his daughter, Alkira.
And now it's back to Simon and Tony.
S2 (11:20):
That leads me into getting into why you wrote the book.
That was I think I saw it was published in 2021.
Is that.
S3 (11:28):
Right? Yeah, it's yeah, about 2021.
S2 (11:30):
Um, and I saw somewhere that one of the reasons
you wrote the book was to help enlighten the general
public about some of these issues that we're just talking
about now. Is that.
S3 (11:40):
Right? Yeah. Look, I think there's two main reasons I
wrote the book, and that decision wasn't taken lightly because
obviously I was dealing with Akira's privacy. Uh, one was
that it was just so hard to articulate who Alkira is,
so I thought, I'll try and write it. Secondly, Which
you just alluded to, Simon, was the fact that I
(12:01):
wanted to engage in a conversation with. Community about people
with disabilities. They are human beings, and we need to
we need to. Treat them as look at their capabilities
rather than disabilities. What can they do? And they can
do a lot more. Society allows them to do a
lot more.
S2 (12:19):
Now, as an established author who's won awards and so forth,
and you've done some biographies of some renowned people, how
different was it to write a book not only about
your daughter, but someone who is in close proximity to you,
knows living and can respond.
S3 (12:41):
And it's look, in one aspect, it's easier because the
research is easier because I've lived with Alkira. Yeah. Um, but, uh,
it also was was difficult, I think I, I mentioned
in the book that, you know, I thought and labored
over every word, every sentence, every paragraph, and thought really
carefully about whether this book should be written. Spoke to
(13:05):
our Ta, Mandy, our Kira's mum, my wife, and also
to our Kira. Now, Kira. Understood. Uh, Kira is aware
that she is different, but we are all different. Uh,
so she's aware. I mean, she came to the book launch.
She actually spoke at the book launch. Uh, so she's
aware of, uh, that she has a so-called disability. So, yeah. Look,
(13:26):
it was difficult, but I thought it was necessary to
engage in this conversation because Simon, unfortunately, still, disabilities is
not talked about enough. And there's not enough advocacy in this,
in this space.
S2 (13:40):
I'm glad you mentioned that, Toni. And without giving too
much praise and bragging about my work here, I get
feedback from people I know because of what I do,
which is giving a voice to those people who aren't
always heard and shining a light on those who aren't
always seen. And I find it a really rewarding experience
(14:01):
to be doing that. And I appreciate you doing what
you've done from your own personal perspective. Before this, did
you have any experience yourself with disability or impairment or
severe illness?
S3 (14:13):
Well, interestingly, when we were in Canberra and I was
a law student at Anu, Australian National University, Mandy, uh,
had a job. She was a former nurse. She had
a job actually for an NGO which looked after people
who had severe intellectual disabilities. So she used to take
(14:34):
them out to the community. And so I met a
couple of her, what they called clients. So that was
really my only experience in that aspect. Uh, so no,
I did not have I did not had wide experience.
So Akira has brought in a new experience and, uh,
into my life. So that's why I try not to be.
I look, I constantly get disappointed and frustrated by how
(14:57):
people think and react. Uh, talk about disabilities. I try
not to be too harsh though. Could I do one
day if I had not had that experience where I
would be? But it is just something that we've got
to keep pushing all the time. The system seems to
be developed to in regards to parents of people with
(15:18):
disability to make you fatigue, to basically say, well, I
just give up.
S2 (15:22):
It is a subject and a topic that I want
to discuss further. My dad suggested this, that we should
talk about the experience of parents of children with disability. Now,
I'd like to ask you, Tony, a really quite personal question,
and it might be covered in the book. I haven't
seen the book as yet. Now, Akira is the oldest
(15:42):
child in your family. You have three children. Once you
discovered that Akira had this condition, was there any hesitation
of having more children?
S3 (15:53):
Well, that's an interesting question, Simon, because we did not
know we already had our second child before we knew
about Alkira. But and this is really difficult I talk
about in the book and before we had our third child, though, uh,
because we'd already had the second child was born, um,
because we didn't know about Akira's condition till she was two. Yeah.
(16:16):
So the the her brother Paris was born about 20
months after alkira. Then there was like a four year
gap between the youngest one, which Tennessee. When we we
never hesitated about having children, but we did have the
amniocentesis when we had the third one. Now, that's a
difficult subject to talk about because why did we do that?
(16:38):
If we had found out that Tennessee, the fetus, had
a so-called abnormality, what would we have done? Um, now,
I often talk to Mandy about that. We aren't sure
that if we found there was a condition that we
would have then terminated the pregnancy, but Mandy just needed
to know.
S2 (16:57):
Mhm.
S3 (16:58):
And then the decision to be made. Yeah.
S2 (17:00):
Yeah. Well thank you for that. That's really enlightening because
I know that there are still those harsh comments and
thoughts that get thrown around in this discussion in the community,
especially nowadays, where everyone's quite harsh about everything.
S3 (17:15):
Yeah. Can I add to that, if you don't mind? Simon,
in the book I do spend some time on talking
about the Australian philosopher professor at Princeton University, Peter Singer.
This is a subject that's covered in the book, and
I actually had to delete some of it because it
was just going to become, uh, too, too big. Uh,
he's the one Peter Singer is this is this philosopher who, um,
(17:39):
basically advocates, uh, that disabled infants should be killed or
can be killed. And that's not a big issue, which
I just find, you know, appalling. But what I think
also is appalling that he's still lauded, he's still championed
if he comes to Australia. He's always wanted for radio,
TV interviews. He has public lectures. Now I just wonder
if Peter Singer advocated for the that children that were
(18:03):
born of a certain color, of a certain ethnic origin,
that they could be killed? How would society react? But
because you're talking about disability, there is criticism. But he's
actually still lauded and often lauded by the people on
my side of politics are left, which I find interesting
and disappointing.
S2 (18:22):
And Peter Singer is quite a contemporary author, very contemporary. Now,
you just mentioned your other children's names, Paris and Tennessee,
which are lovely names. Which made me wonder. Akira.
S3 (18:34):
Yeah, it's it's actually Aboriginal. I'm not Aboriginal, but it's, um,
it's actually, um, Aboriginal for Sky.
S2 (18:41):
Yes. Because once I saw your other children's names, I thought, oh,
is there a connection? Is there a place name as well?
S3 (18:47):
Yeah. Yeah. Uh, well, no, I mean, well, yeah. Paris
and Tennessee obviously are place names, but out here is
the sky, which is, uh, you know, I think appropriate
for Akira because she she brings us so much joy.
S2 (18:58):
Yes. Now, tell us about your connection with the literature
festival that's held in Fremantle.
S3 (19:04):
Yeah. Look, a great festival. Uh, it's been, uh, you know,
well received, uh, great. Uh, reception and responses and, um, yeah,
it's a new festival. And, um, I think, uh, the
more and more that we can have, uh, these festivals
that allow authors to come to discuss about their books,
but also about society and conversations is really important. Um, um,
(19:27):
you know, Fremantle is a great place, obviously, to hold
literary festival.
S2 (19:30):
So your session was held with Gillian astronomy?
S3 (19:33):
Yes.
S2 (19:33):
And you were talking to her about just about your book,
Akira or.
S3 (19:38):
Yeah, about about the book. But obviously as a result
of that book, we talked about issues, um, you know,
ethical issues. Uh, Peter Singer, for instance, um, how society
reacts to, uh, people with disabilities. What it's like being
a parent of a child with a disability.
S2 (19:53):
And I believe as an author, you've got another book
that's coming out.
S3 (19:56):
Well, well, actually, it just came out about two weeks ago. Um,
it's a book that I wrote on, uh, voluntary assisted dying,
which has some relationships here, uh, in some aspects to
the issue of disability. So it was, um, I was
in Parliament when we debated the legalising of voluntary assisted
dying back in 2019. And I'm one of these people
(20:19):
that believes significant historical events should be should be written
down and recorded for the general population to, uh, to, uh,
you know, understand. So that only came out two weeks ago.
S2 (20:31):
I'm fascinated. That's a great subject. And, um, and it
is a good thing to be talking about and, um,
we all should be enlightened into those types of situations. And,
you know, we are we do know that we have
an aging population. And I don't know my future, but
I'd like to have a hand in the way we
(20:52):
end up, I think. Um. I'm fascinated. Tony, just to
ask you another personal question, but a professional personal question.
Someone who has such a busy, professional role in what
you're doing currently and what you've done previously, how is
it you also have time to write these really detailed,
(21:12):
fascinating books? Yeah.
S3 (21:15):
Yeah.
S2 (21:15):
You must be passionate writer because you've done so many studies.
S3 (21:18):
That's right. Well, I mean, I was an academic for
a long period of time. So as an academic, I
did a lot of writing, which is part of the job.
But as I've now, I think, published 3 or 4
books while I've been in Parliament. It was different to
being on the backbench to being a minister. Uh, look,
I just leave, you know, I leave a life that
I try and organize. I, I get up very early
in the morning and, um, I just feel. I don't
(21:41):
know what I mean. I don't think I'm a good writer,
but I feel the need to write. Uh, you know,
I'd love to write a non-fiction. I'd like to write
a fictional book one day, but, uh, I just have
a lot of things I want to discuss with the
public about my views on XYZ or. And that's why
I write, but I actually, I actually enjoy the writing process.
It's hard, but I actually enjoy it.
S2 (22:02):
Was there ever did you ever consider write rather than
writing a non-fiction biography? To write it as a fictional,
to divorce yourself a little bit from the subject?
S3 (22:14):
Look, no I didn't. That was actually a method I
could have used. Uh, but no, in this case, I
just felt there was just. It could. It was just
so close, and I just I just wanted to express
myself as I saw it. But that obviously would have
been an avenue. There's a book in the in the
works that I am looking at using fictional characters to protect, um,
(22:37):
some reputations.
S2 (22:39):
Um, I wanted to, um, listen to your book being
vision impaired, and I couldn't find it online anywhere. So
I looked, searched on the Vision Australia library and they
didn't have it. So I requested that they upload your
book onto their system so their people will be in
touch with your people soon, I hope, and that will
get done and then we'll be able to share that. Also,
(23:00):
whilst I'm talking about that, in regards to your session
at the Fremantle Literature Festival, the festival, because Vision Australia
are media partners with the festival, we will be broadcasting
a recorded session of that of that session that Tony
did in Fremantle at the Maritime Museum. Now, Tony, looking
into stuff about you online and so forth. You do
(23:22):
seem to have a connection with Fremantle, but you're the
state minister representing the seat of Armadale, which is, for
those who don't know, is a long way from Fremantle.
What's your connection with Fremantle?
S3 (23:33):
Well, you're right, I've never lived in Fremantle, although we are.
I was actually born in Collie, moved up to Armadale
when I was nine. Uh, we did have some close
family friends that lived in Spearwood and we often go
to Fremantle. I think the basis of my connection to free. Well,
there's a couple actually. I'm a mad, passionate South Fremantle supporter.
S2 (23:51):
Yes.
S3 (23:51):
All that. And also I met my wife in Fremantle
at Fremantle Hospital. So that's another connection. And her mother,
my my wife is an English immigrant. And her mother's
first job was, um, setting up daycare at child care
Services in Fremantle. And I just love the area. So yeah,
while I have not physically lived there, I have these
(24:13):
sort of connections through my footy connections and the fact
that I met my wife there.
S2 (24:17):
And your Italian heritage, is that right? That's right. So hence.
S3 (24:20):
Fremantle, Spearwood and.
S2 (24:22):
Fremantle. Yeah. So that's, um, fantastic. And I'm really pleased
that you've written this book and has it got much
attention and feedback?
S3 (24:33):
Well, it did at the time. I mean, it was published.
And look, uh, kudos to my publishers, uh, scholarly Australian
scholarly publications Applications in Melbourne, because I did send it
to a few publishers who weren't interested, which I think
you know, might be the way I wrote it, but
it does. It is interesting. Maybe they're just not interested
in this subject. So kudos to Australian scholarly publications or
(24:56):
publishing service. But there are a smaller outfit, so they
didn't have the, uh, the large marketing arm that some
of these, uh, renowned publishers do. Uh, but people that
have read it have, uh, yeah, it has, um, awakened, uh,
thoughts in their minds or. No, I shouldn't say that.
It stimulated them to think about this subject, which I
(25:17):
which is fantastic.
S2 (25:18):
And so the book is a paperback book.
S3 (25:20):
Yeah, it's a paperback book.
S2 (25:21):
And it's still available.
S3 (25:23):
Oh, look, there's very limited copies of some being sold
at the at the festival. Uh, I think the publishers
may be out of stock. I mean, I am thinking,
Simon maybe doing an update in a couple of years time.
S2 (25:34):
Oh I see, yes.
S3 (25:35):
Yeah. So I think I'll probably do something like that.
S2 (25:37):
Looking back and looking forward and seeing how the stories progressed.
It could be a good sequel.
S3 (25:44):
It could be, and maybe Alkira could participate more fully
in this. She does consider herself the co-author of the book.
So yeah, we'll see. But yeah, I do need to
do a follow up.
S2 (25:54):
So is the book available online or in E copies?
You know, people can do that. And any audio book versions.
S3 (26:03):
Well, there is not an audio book version, but I
think we need to look at that. Look, I think
the publishers still have a few copies that can be ordered,
but you know, if there's a if there's a mammoth
increase in demand, it's very easy to reprint. So we
just reprint it.
S2 (26:17):
Well, our time has run out for us today. Tony,
and I really appreciate you speaking with us. It's been
an honor to meet you. And I know, considering your work,
you must be very busy man and what you've been
up to at the moment. It's been fascinating. I do
look forward to being able to look at this book
in more detail very soon. Um, and hint to the
(26:39):
Vision Australia people. Please get that, uh, up and running.
That'd be great. Um, and thanks very much, Tony, for
coming in and speaking with us. And good luck for
the future.
S3 (26:48):
Thank you. Simon. It's been really enjoyable. Thank you.
S2 (26:51):
That's all we have today, folks. Thanks for joining us
once again on Vision Australia Radio. Look forward to speaking
with you next time. Bye for now.
S1 (27:07):
That concludes in Plain Sight for this week. Join us
at the same time next week on Vision Australia Radio,
VA radio Digital and online at VA Radio.com. You can
also listen on demand by searching for In Plain Sight
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My Favorite Murder is a true crime comedy podcast hosted by Karen Kilgariff and Georgia Hardstark. Each week, Karen and Georgia share compelling true crimes and hometown stories from friends and listeners. Since MFM launched in January of 2016, Karen and Georgia have shared their lifelong interest in true crime and have covered stories of infamous serial killers like the Night Stalker, mysterious cold cases, captivating cults, incredible survivor stories and important events from history like the Tulsa race massacre of 1921. My Favorite Murder is part of the Exactly Right podcast network that provides a platform for bold, creative voices to bring to life provocative, entertaining and relatable stories for audiences everywhere. The Exactly Right roster of podcasts covers a variety of topics including historic true crime, comedic interviews and news, science, pop culture and more. Podcasts on the network include Buried Bones with Kate Winkler Dawson and Paul Holes, That's Messed Up: An SVU Podcast, This Podcast Will Kill You, Bananas and more.
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