Full Transcript for The Disability Liberation Movement

was asked to contribute, and of course, I should contribute because I'm doing some very important work in the community sector around disabilities. So I called the session standing up for students with disabilities. 00:06:59 S1: And how did it go? 00:07:00 S3: Oh, it was great. It was tremendous. It's an opportunity to share a really important message. I personalize the message to some degree And instead of talking about the technicalities of being an advocate in the education setting, I broadened the lens out to the importance of seeing the struggle for students in the education system in the wider context of the disability liberation struggle. And I recognize the disability liberation struggle not because I have lived experience of disability, but because I've been a member of the women's liberation struggle and the gay liberation struggle, and the themes are so similar that I wanted to point them out and say that standing up for students with disabilities is about standing up against stigma. Standing up against all those things that movements have to deal with, which is push back from the mainstream pushback and pressure to stay small, pressure to not ask, pressure to just cockpit suite pressure to change your shape so that everybody else is comfortable with the way you are. And I was saying education systems are required by law to adjust the way they do things. They should. It's a community expectation, and students are entitled to have that adjustment so that they can be in class and learn about ancient history, like I did when I was a kid, and not miss out on learning just because the way they learn is a bit different and the system doesn't want to accommodate them. Very long answers. So that's. 00:08:31 S1: Great. That covers so much. And really. 00:08:33 S3: The way. 00:08:34 S1: What you. 00:08:34 S3: Said. Yeah, it was the way I wanted to present the information because as a person who's been through that struggle, I can either tuck my head in or I can say, this is real. I know this to be true and to try to boost other people, to feel the confidence, to feel proud and or refuse shame and refuse stigma. 00:08:54 S1: Max, can you just restate that phrase you used? What was it? Liberty. 00:08:59 S3: Oh, Liberation struggle. 00:09:00 S1: Liberation struggle. I really like that. It's interesting what you just mentioned all that there. Because July is disability Pride Month. And I've spoken about this quite a number of times, about how I'm not sure where we're at at the moment, where there is a disability movement. And I think those awareness days and awareness months help bring together people and also help create a movement, a bit like what happened for people who are gay or lesbian and and people who are of other cultures and going back to, to women's liberation. As you as you mentioned. 00:09:39 S3: One of the things we have in a liberation struggle is a continuum of people who are one end super angry, angry about the way the injustice is

running and how they feel about it. And at the other end, you get the people who are so, in a sense, still oppressed by the situation that that they are not ready to speak up. They are not ready necessarily to come out. They're not ready to make waves. And the thing I would say to the community around the disability, disability liberation struggle is we need all ends of the spectrum. We need the people who are a bit feral and a bit wild and who push out the boundaries. Then I sometimes hear those people getting a little bit criticized because they're a little bit OTT. But we need it. The women's liberation movement used to say, we all do it in our own way. The personal is political, and if you do a tiny bit to stand up for your your tribe and your own rights, that's as important as the people who do chain themselves to stuff and who do go a little bit wild in pushing the message out. We shouldn't try to soften those people. No, because we need them. And I think in a movement, we can actually attack each other unnecessarily because it's actually easier to attack each other than to attack the big monster system that's that's out there doing the oppressing. Processing. So all I'd say around that for any of us in a, in a movement for liberation is let's accept that to be a very wide spectrum of ways of being a liberationist. 00:11:20 S1: It all depends on what you are wanting to achieve and how you want to achieve it. Sometimes when you need instant change, activism and radical movement is often the only way to to do that. Would you agree, Max? 00:11:35 S3: I would absolutely agree. And I when people would say, what do you do as an advocate? I'd say I'm a 9 to 5 middle class activist. Meaning, I do my activism in a paid role and it's it's tidy. Yes. And because I know I've been that other activist, I have been part of Extinction Rebellion protests and other things that are pushing the boundaries. But in my advocacy, it's kind of cool. People expect me to be, you know, six foot six and really slamming the table. Advocacy needs to be done carefully, and it needs to be done compassionately, and it needs to be compassionate for all the parties around the table. And I said, and it even needs to be done with love. Yes. And that one of the things that has made my advocacy successful in the education area is that I am careful for everybody in the room. I mean, the principle of advocacy is you need to be for me in the world, according to Max, is conflict averse, but conflict ready? If your only conflict averse, you're no good to anybody because you're not going to know when to lean in. But if you're conflict ready, you're aware that there might be a point at which you need to step up or push back, and you need to be have the courage to do that and to be calm and cool enough to be able to know what to say. It's a very tricky and beautiful practice because it does keep you on your toes. And it calls on. It calls on your intellect. It calls on your your heart. It's the very best, I think, way to do, um, social change so that you bring people along with you. 00:13:18 S1: So the type of advocacy that you're doing in the education realm is that one on one with a student comes to you and says, oh, things aren't working for me this well at this particular school? Or is it more to do with changing the school system? 00:13:34 S3: If I can just step back to what DWA does? DWA has as its motto making families lives better. And so we work with parents mostly because they are the leaders of the family, and we work to support parents with knowledge, information, and to know that there's an organization that has their back if they need it. And so most of my work is on the phone, mostly with parents, where parents are calling on behalf of their child's student at a particular school. And we have an ethos that is that the service is immediate. As soon as you're on the phone to me or the organization, you're getting something that supports you in that moment because people only call for assistance in the moment. They need it. You can't book it ahead and you can't be told to wait. And so a lot of it is talking to the person, the parent about what's going on. Sometimes they do have the magic of talking to a student. If I can hear the student in the background, I'd say to the parent, whack it on speaker, get them to the phone, let's talk, because I, I hope that I can reach across the space to them to have them know that I'm a human rights person that's here for them, and that there's something that I can say on their behalf if they help me with their voice. So that's what I do. And then otherwise it might be, I mean, sweet examples. Like one day I got back to my desk, I saw an email in my inbox, and I. Then I read it and thought, oh no, this can't be sent. Rang them and said, you haven't sent this, have you? No no, no I haven't. Can I work on it? And I managed to reduce it down from, you know, a page of fairly agitated speak to something quite, um, quite more diplomatic. And they said, thank you. That's actually what I wanted to say. And so I do a fair bit of that. Um, it's it's good work because I'm cool head. I can I can assess what's needing to be said and I can take out the hazards, and then I can go to meetings with people and be there beside them when they are tackling a situation that really has had them losing sleep and very, very anxious for a while. 00:15:43 S1: I guess, um, we should also try to clarify for people what developmental disability is and how do we define that. 00:15:52 S3: I'm really grateful that you've asked that. DWA was established by parents of young, of family members with intellectual disability, predominantly complex disability, often Genetic disorders that led to intellectual disability and sometimes complex communication, which is where people don't use words to communicate. And that's the that's the history of the organization, families setting it up to to say, I need something in place

for when I'm no longer here. And so it's a 40 year old organization. We've had our 40th anniversary recently, but developmental disability in broader terms, is any disability of childhood that might impact on your life in adulthood. And so, of course, the the tsunami now really of diagnoses in of neurodivergence like we're all neurodiverse. We are there is neurodiversity across the spectrum. But neurodivergence is where people might have autism spectrum. They might have ADHD, sensory processing disorders, some disabilities of learning which is dyscalculia, dyslexia and dysgraphia.. I'm learning all this language. And, um, and so we support any parents with kids with disabilities that are struggling in dealing with systems and getting their entitlements. 00:17:14 S1: Yeah. Okay. I often find it really interesting to know the background of organizations, but also find it interesting to know the importance of accurate and sometimes appropriate labels and distinguishing what people want to refer to themselves as or whatever. 00:17:38 S3: Oh, absolutely. Simon. And, you know, with my history in the, um, in the queer movement, you know, we very strong history around seizing language, using language to our purpose. And my first work was in the Aids crisis. Okay. The very beginning of the Aids crisis in WA. And I was trained to never use the term sufferer sufferer with verboten. And I find it hard to say it now without putting intellectual kind of inverted commas around it, because it was a word that was odious to people with HIV and Aids. And so you're right. And yesterday, a couple of days ago, I was in a meeting with a family along the autism spectrum. There's this profile called PDA, and it's a profile of response to the world through significant anxiety around demands that might be made on you to do things in life. Yeah. And the, the, the definition of PDAs come from England, which is pathological demand avoidance. But I was talking to some parents the other day and I said, I don't like that. I don't like that label. I work on the other label, which is persistent drive for autonomy. So if you think about a demand that's being made on a person, it's intruding on their autonomy because it's it's trying to negotiate them to do something that that other person thinks they should do. Yeah. And the anxiety around demands for people with this profile can lead to explosive behaviors in reaction that are based in anxiety. And what other people, of course, from the old paradigm of compliance would say that's naughty, naughty behavior tantrums. Yeah. Whereas the term meltdown is used for that explosive behavior event. And because I'm a layperson and I sometimes don't like labels, I in my own mind translate that to anxiety overwhelm. Yeah. Because meltdowns like that other old term we used to hear nervous breakdown tells you nothing. Nothing about what's going on for the person. Whereas anxiety overwhelm actually says what's happening? 00:19:48 S1: Yeah. I was

quite intrigued about that terminology PDA. And you used the term what was the term? Pathological. 00:19:55 S3: Pathological demand avoidance. 00:19:57 S1: Yeah. Okay. 00:19:58 S3: So extreme. 00:19:59 S1: Harking back on to the medical model, obviously, and that everything revolves around you've got a medical condition. 00:20:10 S3: A pathology. You're right. 00:20:12 S1: And you have treating doctors and so on and so forth. And in a recent interview, we talked about the difference between the medical model and the social model. And we talked about what that means to to explain it to people that don't know. I often still get asked with being vision impaired, who's my treating doctor? 00:20:34 S3: Oh. 00:20:34 S1: And I say, I don't have a treating doctor. My eyesight is was diagnosed 40 years ago and it doesn't need treatment. 00:20:43 S3: I think at that point you makes a beautiful one Simon, because what it does is it flips flips causation to the person from the person to the environment. Yes. And that's what we're struggling with. So in schools the behavior might be attributed either to the child or the parent or the family and the family saying, we don't see this behavior at home, so the family know for sure this kid can function as long as the environment around them is aware and is sensitive, and recognizes that this isn't an impaired or pathological child. As such, it's a child that needs support to learn themselves, learn the environment, and manage, but they need others around them to recognize its environmental and relational more than embedded in the person. 00:21:33 S1: Mhm. So you take let's say advice or input from the families, and then you take it to the school itself and say oh so and so would really work better within such and such or. 00:21:49 S3: No, because that would mean I need to have content knowledge about disability. Okay. And as an advocate at the Health Consumers Council, which is where I became an advocate, the pace and the volume of work coming at me was so fast that I decided I'm going to. I'm going to be lean and mean and and very speedy in my advocacy, which is to do what I can do the best way I can and support the person to do what they need to do the best way they can, which means it's not resting on me. So what it indicates is that advocacy isn't about case management and me taking the case like a lawyer and and running the case the way I deal with it is to say the parent is the case manager. They're calling Max in. Yeah, they're consulting me on the next step and off they go and do the next step. And if they need me to join them in it, absolutely. I join them in it. And so that's a beautiful way to do things because the parent is the knowledge holder. I'm the one that's making the space. So give a great example. Meet this lovely parents. We turn up at the posh school that their kid goes at. We're outside, we're chatting away. We go into the meeting, there's seven of them on the other side, and the dad and the mum and me on this side. And then the dad throws himself into corporate managerial hyperdrive. And so as an advocate, you want to not interrupt, you know. You don't want to inject yourself straight away. But I just had to swing around and go, whoa, whoa, whoa. This isn't your meeting, for a start. And at this meeting, we need you to be dad. And he went, oh. Oh, yeah. Bang! Changed everything. The meeting proceeded. That was the intervention needed by me. And it wasn't about content. It was about process. It was about making space for the exchange to occur that wasn't escalated, was de-escalated and settled. It was gorgeous moment. And outside. When we walked out, the guy said, wow, thanks for reeling me in. 00:23:41 S1: Yeah, excellent. I really love everything that you've you've brought to us today, Max. It's it's very enlightening and really, really sums up what we here at this program are all about. And some of the stuff that Vision Australia Radio does in general. 00:23:59 S3: What you do for me, Simon, is it's like a friendship. There are certain friendships allow you to talk about certain things in a certain way, because you have the confidence that's going to be received well. And what you've given me is an opportunity to talk in this way because you've understood what it is I'm needing to say, and you've supported me to say it. So I really appreciate this opportunity that you've given me. 00:24:20 S1: Well, I think it's important, especially for organisations like DDA and the people that you represent there, because often traditionally they've been the most neglected in our community. 00:24:37 S3: You're absolutely right. There's a lot of people in Duwa's constituency that do not have a voice, either because they cannot use words to communicate or because the community's just too rapid for them and doesn't give them time. People with intellectual disability who need a bit more time to say what they need to say, and they need to be given space to process information, and a lot of people find that everybody's just rushing past them and really aren't interested. 00:25:03 S1: No, I am really interested. And I don't mean to rush, but we have very limited time on this program. I could talk to you for hours and hours, Maxine, because I find you really interesting and really lovely person to be alongside. I was wondering if you could leave us with some thoughts about what DWA is and what they're doing, and what you'd like the public to know about. 00:25:26 S3: I'll give you a potted example. Our team at DWA are mostly parents with family members with significant disability that reflect our constituency. So we are an US organization. We're not an us and them organization. And so the team recently decided that what's missing out there in education for parents is some resources for what if I died tomorrow? So they developed a program called What if I Died tomorrow? And that's exploring future planning, future proofing for families with people who are very, very dependent, right down to if I die tomorrow, who would know what toothpaste my family member prefers? So that's an example of of how of our responsiveness to what our constituent needs and our readiness to step up and keep developing resources that are cutting edge to meet the needs of the community. 00:26:16 S1: I looked up the website and I did find that quite confronting. That's the first thing you see. 00:26:21 S3: But when it was when it was posted, we had people ringing in tears saying, thank you, thank you, thank you for doing this because this is what I've been wanting. 00:26:28 S1: I can see now why DWA is such a relevant organization. Just from what I've been reading about. It is because like you say, it comes from the people who use it. It's designed it's like that catchphrase that we've been using for a while. It's co-designed. 00:26:46 S3: Co-designed, and nothing about us without us. You're right. Simon. Thank you. 00:26:49 S1: Yeah. Is there anything else you'd like to add, Max, before we say goodbye? 00:26:53 S3: Only to say, happy to come again and thank you for the work that you do. Because this is a very important way to get the message out. 00:27:00 S1: Well, thank you very much. I really appreciate that. Well, that's all we have time for today, folks. I'd like to thank Maxine Drake once again for coming in to talk to us. And I found it really so enlightening and so warming to be joined by Max today. Thank you very much, Maxine. 00:27:14 S3: Thanks, Simon. 00:27:26 S2: 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 Vision Australia Radio. Thanks for listening. 00:27:50 S1: Thank you.