Christina: Hello and welcome to another episode
of the Recipients. Today I'm joined by the fabulous Heidi La Paglia Reid who is a fabulous
human and a legend in our movement and somebody I've had the great pleasure of knowing
through Women With Disabilities Australia and other organisations over many years.
I'll tell you a little bit about Heidi to start with. Heidi has worked tirelessly to advocate for
and represent the rights of autistic and disabled people and is currently working on Aus
tralia's
first National Autism Strategy. Heidi has also led and contributed to numerous initiatives which
aim to prevent violence against disabled women including Our Watch's Changing the Landscape
Framework and Women with Disabilities Australia's Our Site website, all of which are really
important pieces of work that have contributed enormous things. Heidi is the recipient of the
2023 National Award for Disability Leadership for Rights Activism. This is a hotly contested
award each year,
we have so many fantastic rights activists in the disability community. The
Rights Activism Award is awarded for somebody who has advanced the status of disabled
people by using human rights mechanisms, including the Convention on the Rights of Persons
with Disabilities, but there are others as well. So, Heidi has not just used the CRPD but probably
several other rights mechanisms along the way and we might hear a bit about that as we go.
So, welcome Heidi. Congratulations, it's tremendous t
o be talking to you today.
Heidi: You too. Thank you for having me. It's, yeah, feels a bit surreal I guess. I'm not sure
that I would consider myself the best rights activist but yeah, it's certainly appreciative.
Christina: Well I wonder what the best rights activist is, I mean are any of us
the best, what's the best anyway? So, that kind of leads in doesn't it, I mean
how did you get into this and what is rights activism? What constitutes that sort of work?
Heidi: Yeah that's a good questi
on, how did I get into it? I was talking to someone this morning
about this. I have never really had the answer as to how I got into human rights activism or
disability rights activism. But I think it stems from being a disabled person myself and having
experienced what I would call mistreatment from various systems and structures. Very much starting
with going through the mental health system as a teenager so, before I was even an adult, and
just always having this strong sense of social j
ustice and feeling like something is not right
and that needs to change. That all started to make sense for me, I suppose when I was diagnosed
autistic at the age of 27, and realised that lots of autistic people feel that way because we tend
to have quite, I guess black and white thinking, very strong values when something doesn't quite
sort of align with our values or with what we know should be right, we just feel very strongly
about that and I know I'm one of those people. In terms of wh
at rights activism actually is, I mean
I guess that depends on who you ask, but in terms of the Convention on the Rights of Persons with
Disabilities and other human rights conventions, I suppose for me it's about trying to hold our
governments including our Federal government and State governments to account in making
sure they uphold the rights of people with disabilities under those conventions, which a lot
of the time unfortunately, they don't. So yeah, as activists and advocates, I thi
nk we kind
of have almost a duty to, to call that out and try and advocate for improvement.
Christina: You talk there about that sense that strong sense of social justice and then you
just mentioned that sense of duty, do you think there are those of us who are just inherently the
people who fix things or make change is the word, the sort of fashionable way of calling it now, or
just aren't going to be the people that sit back, and expect that it will be okay, or that
somehow somebody else
will do it. Given that rights activists or change makers are in
fact the minority of the population, we're not that kind of common even though we seem to move
in communities and movements where there is a lot of us hanging out in certain spaces. But, is
there a type of person who does this or is there a thing that sparks people off? Is it all of that?
I don't know, I'm answering my own question here which is remarkably unprofessional of me, but is
there, have you observed any particular thr
ead or commonality amongst the people you've come across
in the various movements that you're a part of? Heidi: Hmmm
Christina: Which is the spark that causes people to be in the change making space?
Heidi: Yeah, I think, I mean there s a huge diversity within activism and within change making
that I guess one thing is I think we're often, I mean I don t want to label other people, but I
know for me and the people I'm sort of closest to, it's often those of us who always felt we didn't
quite
fit in or we had experienced mistreatment in some way or we experienced disadvantage on
the basis of something. Whether you're disabled or First Nations or a woman or gender diverse,
there's something that makes it harder for us to get by in the world generally. Or maybe for some
people it's that you're a parent of someone that is disadvantaged or a friend of someone that's disadvantaged. But generally from what I've experienced and seen there's usually some kind of
personal connection to w
hy we do it and I know for me there is, and I think for most people there
is. But having those kind of, like the United Nations conventions and Discrimination Acts in
the State and Federally that gives us a way, a mechanism to use to advocate for change so,
it's not just us kind of saying well I have disadvantage and you need to change that, it's people that are able to I suppose connect their individual experiences to broader
social structures and see that it's not just an individual experi
ence. If that makes sense.
Christina: Oh look I was actually going to ask you about that, I'm really pleased you've touched on that because something I've observed is that not everybody sees the
system that they're inside. And how it's that system which is causing or at the root of the
oppression, marginalisation, discrimination, whatever that they are experiencing as an
individual and I've often found myself in conversation with people over many years somehow
trying to work a way to support
them to lift up and see it in a bigger picture way, so it is more
of a systemic look. So, how you've just described that where it isn't just about the individual
and this is my problem and it's about me Heidi: Yep.
Christina: How we as rights activists actually turn that into a
space where this is actually a system issue, this is a thing where it's the structures, the
legal systems, patriarchy, which of course is at the root of so much, all of those systems that
come to play which don't ta
ke kindly to people who are different or people who don't operate in
the generically narrow band or all of that sort of stuff. How have you observed that space of moving
from the individual to the system and how have you brought others along with you to see that?
Heidi: Yeah, that's, you've got some hard questions.
Christina: Famous for hard questions. Welcome. Welcome to Christina. Go Heidi!
Heidi: I think for me so, it was even though I'm autistic and disabled I didn't always know
that, I
actually started more in the feminist space and was drawn towards that when I started to
study gender studies at university and learn about systems and how they impacted me as an assigned
female at birth person that identifies as a woman. And, I don't know, I was talking to someone the
other day about this and they, particularly in spaces that are dominated by autistic people, we
tend to be labelled as problems because autistic people tend to be very honest, I guess is the best
way to put i
t. We kind of care less about calling things out because we tend to not be as drawn to
abiding with social norms and wanting to fit in. And someone said to me the other day something
about groups of autistic people being subversive and they used kind of a negative word about it.
I don't know that they meant it in that way but it came across in like we're problem making type
people. And I sort of said well I think of it more like groups of autistic people organising
amongst ourselves and get
ting each other to organise and see that it s the outside world
that's the problem because they don't include us, rather than us that's the problem .
I see it a bit like feminist consciousness raising and I guess that's because
that's where my activism came from, but in the sense that, I'm struggling to put my
logic together. But I guess what I'm saying is, I see that things change when we're able to teach
each other, that our experiences come from systems that don't include us, not from ou
rselves. And I
think that does come from collective organising, whether it be through feminist consciousness
raising groups, which I know is a very white feminist term and I don't necessarily use that
often but I think it's a good analogy, or whether it comes from groups of disability rights
organising. So, for me I got into disability rights because I started to connect with people
in those spaces and started working in that space and was then able to see the similarities in
experience, a
nd then connect that to the broader structures because if everybody is having the
same experience then obviously it's not just me. But I don't think you really see that if
you're isolated and you're not connected to those movements, which is sort of what, I don't know it's kind of an interesting one because I guess the way in which our society works in
a very capitalist, individualised way where we all just kind of get on with our lives in
our separate families and separate homes, doesn't re
ally encourage that kind of organising.
So, when it does happen it's very meaningful and can create a lot of change, but you're right that
a lot of people don't have that opportunity and don't see those systems as a result of that.
I don't know if I made any sense just then, I felt like I went on a tangent.
Christina: No you did and the thing I'm really reflecting on as you talk there its really
lovely because I've found this very rarely in my experience so it's really marvellous talking
to
you today about it. You know as I had a very similar thing, I actually grew up in the women's
movement, you know, women we were women back then, and you know that's where my activism started.
And it was when my disability turned up in my late twenties a bit like you that I then took my
feminism across into the disability movement. And I've always observed that there's been, in some
ways, a privilege of having a multi-movement presence. Because you talked about the isolation
so it has a de-
isolating affect, if that is even a word, but also understanding that there's a
certain amount of movement kind of personality, movements have their own way of heaving and
swaying and doing things, and the maturity of one movement is not the same stage as the maturity of
another movement and how those things have linked and what happens. And observing my colleagues in
the disability rights movement, who have only been in the disability rights space and understanding
through that the privile
ge of having that women's movement or feminism starting point and
learning how to shift tactics, structures, ways of looking and being across into others.
So, as you're talking I'm thinking those things and finding that quite invigorating and clearly we
should have had a case of wine and been somewhere a little more relaxed for this conversation
because it needs to go for some hours. Heidi: Yes.
Christina: So, I'm having all of those thoughts at the same time, yeah.
So it is a really intere
sting space. We'll save that for another day. What are you working
on right now Heidi, what's the big deal? Heidi: Oh lots, but I'm very engrossed in the
neurodivergent rights space and right now I've been very focused on the fact that the, you might
have seen on my social media or maybe you didn't which is completely fine, the Federal government
announced that they are funding $14.8 million into a pilot program called Inklings, which essentially
aims to prevent babies from receiving an aut
ism diagnosis. As someone that's very pro autistic
identity and supporting children to identify as autistic if they are neurodivergent
Christina: And where's the disability pride, you know, disability pride for heaven's sake.
Heidi: Yes, I've been very, very grumpy about this and making a lot of fuss about it in various
spaces and so have lots of other autistic people to be fair, it's certainly not just me. but our
governments aren't really listening and I feel like there's, I guess we do s
ee this a little
bit with certain movements, it's almost like we've seen the neurodiversity pride movement move
significantly forward in recent years where people are now even talking about neurodiversity, talking
about autism, whereas I didn't see that a few years ago. And alongside that there's almost like
a backward movement where people are trying to take us back to no, we still need everybody to be
normal, we don't care if these kids are different they still need to fit in to a normali
sed way of,
you know normalised way of living so we're going to introduce this program to make them more
normal. And there seem to be lots of people that are saying that this is a good thing, but the
other thing is it's also come at the same time or immediately after all of the discussion around the
NDIS review, which I'm sure you've been following, where people had a lot to say about unfounded,
I guess a lot of people made lots of unfounded statements that autism is being over diagnosed.
S
o yeah, there's a lot of, a lot going on in that space at the moment. Yeah.
Christina: Yes, I noticed some things going past but I've learned in my activism over
the decades through some of my aunties and such in movements that you focus on the thing that you
focus on and that's how you get stuff done. So, I haven't focused too heavily on the Inklings
thing but I did notice it. It strikes me as somehow approaching eugenics really. Oops, dare I
say it aloud, goodness me. It's interesting too,
because we also know that there's a very
gendered space in that and the fact that there's, one would expect to see this in other areas as
well because we also know with the NDIS that there's a very low number of women or women identifying
folk who are actually receiving NDIS support, and so it would make sense that we're going
to see blossoming numbers in certain areas where there have traditionally been, or
historically been low numbers of women or female apparent folk because the medical
system
is so patriarchal and didn't actually spot us being part of it. So there's a whole bunch of ..
oh dear me. Yes, so much to do. So much to do. What are some specific barriers or roadblocks that
you've encountered in your work over the years, that stuff that I mean as disabled women we
find ourselves in a position where we don't get the same levels of support which we've just
touched on but there's other things that happen to us both individually and systemically
that keep us from pa
rticipating or prevent us from doing our work or are even outright
deliberately placed in front of us as barriers, have you experienced anything in that regard?
Heidi: Definitely, lots of things, it's hard to pinpoint one. But I guess one thing I find
very, very frustrating is that we talk so much about accessibility and inclusion of people with
disability but it's rarely intersectional and I've really faced the brunt of this now that I'm a
parent, so I have an almost two year old now, and I
felt like as soon as I even had to start before
it was even a thing, even when I had to start thinking of things like parental leave and needing
flexible work arrangements around my child, the disability movement all of a sudden became less
possible to engage in. Because it was just like, everybody is just like "No there's one way of doing
things and if you can't engage in that then too bad." And that's as you are probably aware I
worked for disability people's organisation for many years
and after having a child I moved to
working for myself because it was just impossible. And I've now engaged in the disability movement
in a different way, in my own way and I've had to work around my own needs and my own child's
needs. But it wasn't necessarily because I wanted to do it that way, it was because there was no
other choice. And I just find that really poor when we talk so much about accessibility but when
it actually comes down to it we still privilege this one way of being wh
ich is very much, I don't
want to be too stereotypical but really if you're a white disabled man who uses a wheelchair then
you're going to probably be alright, but if you're anything else and I'm not just talking about
parenting and being a woman there's also different needs if you're First Nations or culturally
diverse or have any kind of difference. It's not great. So yeah, a lack of intersectionality is
I guess what I'm going to summarise that as. Christina: I really, I really value you
raising
that, I think we don't talk enough about how accessible or inclusive our movement is or in
fact the way that it is, it is very gendered. We started organisations because of that decades ago
but it still hasn't moved beyond the expectation that if we are going to engage we have to engage
on their terms rather than bringing ourselves into the space in a way that works for us, and
that's going to be different for all of us. And I would have thought that in our community
particularly
we would understand that every single one of us is a different human and we all have
different solutions or different ways of engaging as a result. It is fascinating isn't it and its
something I've been really invigorated by for some time now is how we approach disability rights from
a far more mature intersectional approach. So, looking at or recognising that we are bringing
these multi layered spaces together in our highly intersectional community because we are such a
highly intersection
al community. So, thank you for that one. I think that's a really, a really
valuable addition to the conversation and, we often look outwards for barriers, how much energy
are we putting to looking inwards and recognising our own space and cleaning up our own shit.
Heidi: Yeah, yeah and I guess someone with, I'm very sort of tied to values like when I say
I value something I really do, I don't just say it. I struggle with that. Because I guess if you
look at governments, or you look at conse
rvative political parties, for example, I don't expect
them to be inclusive. So when they're not, I'm kind of like oh yeah, whatever, haha, that's
what we all expected. But when it's organisations and movements that claim to be inclusive,
and say we stand for intersectionality, and we stand for disability rights and
accessibility, but then when it comes down to it, they're actually not. I really struggle with
that. Because I'm like but you said you were so why are you not? But yeah, I don't
really have the
answer as to what we do about that. But there's certainly a lot that needs to change.
Christina: If we had the answers Heidi, I think we'd both be far
wealthier than we are perhaps. Heidi: Maybe.
Christina: Unfortunately we don't. That aside, something I have valued is how
we have pockets in our movement, where we're able to have these, what I call forthright, these
open conversations without judgement. And to me, there's something in that space, which is
about how we can
all bring ourselves together to address common barriers. So, yeah.
How do you think receiving this award, particularly the Rights Activism award is going
to change your work or support your work? Heidi: I mean, to be honest, I don't think it
really changes my work necessarily. But it's certainly nice to be recognised. And feel
like the work is valued, especially when, particularly in what I do, I often feel like
I'm that person on government committees or on community organisations that's c
ontinually
calling things out. Like calling out problems, calling out things that aren't accessible, saying
they need to do better on co-designing with the community and so on. And sometimes,
last week I had several meetings of doing that back to back and sometimes you
just feel like, am I the problem? Like, is something else going on here that I'm not
seeing? Does everyone just think I'm annoying? Christina: Oh yes, they do.
Heidi: Yeah, I'm sure they do. So I guess receiving an award lik
e that does feel
a bit like well, at least maybe not everybody, but at least some people value it. And so there
must be some value in what I'm doing. I'm not just one individual annoying person that no one
likes. Although some people might think that. Christina: It is challenging being the one who
speaks up or is unafraid of speaking up. Heidi: Yes.
Christina: I'm gonna flip that there too and ask though in those
settings, being nationally recognised as, for your rights activism work, this
is not
just something that anyone is going to get, this is a serious recognition by your
peers in the disability rights movement, that you are somebody of consequence in this
space. How might that adjust the minds of those government people who simply find you annoying
or the people in other spaces, organisations, academia, those spaces who find the questions
or the statements awkward and inconvenient? Heidi: I mean I struggle to know what
they might be thinking about that, but I know that
for me it certainly feels more
validating. It maybe gives a bit more weight to what I'm doing and hopefully for them maybe
it would scare them into action a bit more, I'm not sure. It's, yeah, all I can really say
is it feels validating and just gives me more energy to go and advocate for more change.
Christina: That's fantastic. And so what are you going to do next? What's the big sort
of thing, I mean you've got the immediate work you're on now but what's the plan?
Heidi: What is the plan
, I don't really know. I get very hyper fixated on things and at the
moment that fixation is definitely on Inklings and the National Autism Strategy. And I guess moving
forwards it's just about promoting alternatives, like if we're pushing back against these
researchers or medical professionals who want to remove our differences, not diagnose
us with autism because apparently that's bad, looking to promote more in this case
neuro-affirming practices that embrace our identity and make societ
y more inclusive.
How we go about that specifically I haven't quite worked that out but who knows.
Christina: It will come, it will come. I have a particular question that I always ask everyone as
we come towards the end of our time together and that is, who is a leader you admire and why?
Heidi: Oh I struggle with that question. At the moment I'm gonna say, hopefully she'll
appreciate this, Sarah Langston is someone who I've come across recently who started up the
Australian Neuro Divergen
t Parents Association, which was incorporated in November I think. Very,
very recent, but it's made, ANPA is the acronym, so A N P A. ANPA has made a lot noise already and
is being recognised already four months into its fruition I suppose as a very, I can't remember
the names it's been given, but essentially we've been labelled as a bunch of bored mums, a bunch of
annoying, autistic mothers who just want to piss everybody off and I actually love that.
Christina: I was gonna say get a t-shi
rt annoying, autistic mother . Go for it!
Heidi: And Sarah's someone that just has no fear, just is really staunch on doing what's right
and pushing for the rights of ourselves and our children, and getting labels like that is just, it
just says it all really, like I think we all know that any kind of successful social movements have
always been labelled as problematic at least to begin with so, I think that's a great sign. And I
think Sarah's been really proactive in making that happen and
creating a space where autistic mothers
and parents can feel safe to do that advocacy. Christina: Fantastic. I was once given a book by a
colleague and it just made sense at the time but I'm thinking of it as you say that and it's called
Making Trouble . And it's someone's autobiography of being in the women's movement particularly
but yeah. When you're actually making an impact, when you're getting the job done that's
when they start calling you names. Heidi: Yes exactly
Christina: It's de
finitely a good thing. We have run out of time today but
it's been a real pleasure to sit and chat with you for a period Heidi and we must do it again
at some point with a lot more time and perhaps that bottle of wine or two. Thank you so much.
Once again congratulations on being the recipient of the Rights Activism Award in the National
Awards for Disability Leadership 2023. Heidi La Paglia Reid thank you so much.
Heidi: No worries, thank you.
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