Tigger Warning Sexual Assault
Join Peta as she chats with Annie Crowe, a neurodivergent disability rights lawyer, who reflects on her journey to receiving her autism and ADHD diagnoses.
Annie delves into how these diagnoses helped her make sense of her past, particularly in relation to her experiences with sexual assault and eating disorders. Her story is one of empowerment, as she now dedicates her work to advocating for the rights of others with disabilities.
Connect with Annie:
website: https://www.neuroaccess.com.au/
Instagram: https://www.instagram.com/_anniecrowe/?hl=en
Youtube: https://www.youtube.com/@anniecrowe
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode transcript:
Peta [00:00:00] Before we get started this week, I just want to let you know that Annie and I talk about sexual assault on this week's episode. So if this episode isn't right for you at this time, please skip it. I also want to remind you there's always support here in Australia. You can contact one 800 respect. Which is 1800 737 732. Hello and welcome to the I Can't Stand Podcast, the podcast answering our questions about what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week I have Annie Crowe and she is an amazing disability rights lawyer. She specialises in disability rights and human rights because they are in fact the same thing. We had an amazing conversation. We spoke about how autism impacts her life, how it has impacted her perspective, and also we touched on her experience with sexual assault. Thank you so much for being here and for listening to any story. So without any further ado, let's get into it.
Annie [00:01:35] I'm Annie Crowe and I'm a multiply neurodivergent, multiply disabled Australian human rights lawyer. I do focus more on disability rights, but I call myself a human rights lawyer. Just because disability rights are human rights. My business is called Neuro Access, and we focus on building equity and accessibility specifically for neurodivergent people. And yeah, I love talking about all things disability rights, neurodiversity, self-advocacy, and empowering our community.
Peta [00:02:06] First and foremost, tell me about what it was like to be finally diagnosed with autism and ADHD. How did you feel when that finally happened? And yeah, the process to get there.
Annie [00:02:19] It's been about five years since I was diagnosed, pre-COVID. And I went in thinking I was getting an ADHD diagnosis, very much confident in the fact that I had ADHD by then, which I only sort of discovered after being diagnosed with PTSD and researching the overlap in PTSD and ADHD symptoms, at the end of my very intense, session with my psychiatrist, he said, yeah. So you've definitely got ADHD, anything else? And I was like, is that a trick question? Like, seriously? He's like, yeah, you're also autistic. And I was like, what? It really shocked me. At the time, just because I was like, surely I would have run into this in my extensive research on ADHD in women? And I hadn't. But as soon as he told me, I deep dived into understanding autism and was like, oh my God, this explains everything. I was really, really happy when I found out these answers because they were after, you know, a very, very long time trying to figure out how my body worked, how my brain worked. Years of therapy, years of seeing every specialist under the sun. Because for me, they're very interlinked with my physical disability, which is hypermobile Ehlers-Danlos syndrome, very, very common in the autistic community. And I also only got that diagnosis shortly after or the autism diagnosis. We have such a limited view of disability, let alone there's so many people out there that are genuinely disabled and have disability rights that they don't even know that they can access. And I was one of them for 28 years of my life.
Peta [00:04:11] Which really illustrates how much we do have a need to have people like you in the community and other people that support people with disabilities to make sure that their human rights are maintained because, as they say, as two privileged, white humans sitting on this podcast, both of us, really have experienced, you know, a limitation to our human rights. And that's not okay. But it also really highlights and worries me about other people that might not have the privileges that I have. I want to go back before we dive into that very interesting topic Annie and talk about whether you felt a grief or you were annoyed, upset when you were looking back at your past life and what the knowledge is given you. If you had of known about your disabilities earlier and how your life might have been different?
Annie [00:05:06] Yeah, hugely. So, I mean, that's kind of what fuels what I do these days with my business, Neuro Access and a few of the not for profits I chair and such. But essentially I was outraged. Why didn't I know this sooner? Because it's not like the signs weren't there. And also, how would have knowing this sooner changed my life? Giving me the language to articulate these things could have definitely helped. And giving me, the ability to really fight for my needs and advocate for what I. How I experience the world is absolutely priceless and things that I focus on teaching people this day and age. And, so yeah, it was a big shift in terms of, you know, finally I have answers. And why did I have to live almost three decades without them? Most of us, regardless of when we're diagnosed, have a life of, you know, complex trauma, bullying, sexual assault is hugely high. The sexual violence with, autistic women. I say women because that was the study. But I'm sure it's broader if you include all genders. Is at 90%. Myself and most of my fellow advocates have experienced sexual violence in our life. And it's really upsetting because not only do I think that knowing I was autistic and even ADHD before that happened would have helped, but also in how I process it, processed it because when I sought psychological support, it was from a very neurotypical psychology lens. And, you know, one of the one of the main ways that psychologists deal with things like depression is a thing called behavioural activation. And when you're autistic, that can be absolutely harmful.
Peta [00:07:02] I'm so sorry that you've experienced sexual assault. Like, you know, a warning, a trigger warning. And I will put triggers in this episode.
Annie [00:07:09] Okay? Good idea.
Peta [00:07:10] And it's one of those things that, you know, we don't want to think about often, but it's such a prevalent issue, particularly for disabled people, disabled women. A lot of the studies are centred around, and I don't want to push you if you don't want to go there, but like a how do you think your autism and dealing with your sexual assault interplayed with each other?
Annie [00:07:34] Yeah, hugely. I'll go there. I just, yeah, definitely trigger warning for anyone who's not ready to listen. My first partner in high school was emotionally manipulative, and harmful, and I didn't see the signs. I was very naive. And then I got very lucky. Meeting my now husband of over ten years in second year uni, who just happens to be the most stable neurodivergent man I've ever met. Oh, man. In general, not just neurodivergent. I should say that, but so many of my community, unfortunately, do not have that luck. And I was my sexual violence was after I got married, about six months after I got married on my, on a work trip. And I was just not prepared. It happened in a way that, like, I won't get into too many details, and I really don't want to trigger people, but. Like. To put it more broadly, it just I wasn't expecting it. You know, I was being friendly at a work function. And, you know, I was even wearing my engagement ring. But I was talking about my wedding and marriage, and I was, you know, newly wed. So I just didn't think that I was a target at all. And then it just sort of happened out of nowhere, people sort of disappeared, disappeared. And I was playing pool with a person, and. The biggest thing that I struggled with was when it was actually happening. I couldn't find the words. And I'm, you know, I'm very verbal. I like talking a lot. And I just kept repeating, I'm married, I'm married, I'm married because I thought that would mean, like, go away, don't touch me. And in processing it after the fact, I put a lot of self-blame on myself around the fact that I couldn't find the words and that maybe those words weren't strong enough to tell him to not touch me. And I just didn't have anyone there to explain not only how I viewed that entire scenario, but how I coped with it and processed it. In a lens that fit with my brain. And that was really hard because I. I spent about three years before I could really start to process it. I think what kills me is that for, you know, any neurodivergent or disabled or chronically ill person that experiences this, they should be able to access therapy and support that understands them as a whole person and helps them understand it from their lens, whether that's, you know, mixing lived experience or having, you know, neuro affirming therapy, things that are just really hard to get still. Because I really believe not only would that help with prevention, but it would also help with people processing these really extreme traumas that none of us should ever have to deal with.
Peta [00:10:37] Well, first of all, thank you for sharing. Like, you don't have to share it.
Annie [00:10:41] Oh, totally.
Peta [00:10:43] Thank you so much. I hope it really helps people listening. And if they have experience sexual assault or any assault or anything that they felt violated, that they feel seen and understood through your words. Thank you so much. So it's one of those things that it's tricky when something happens to you that isn't directly related to your disability and you reach out for support, whether it be formal or informal support, and it's having to rely on people's knowledge, but also intertwine your disability lens and how that event is impacted by your disability. That I don't think non-disabled people really understand how that interplays with each other.
Annie [00:11:29] Absolutely. It it's I think it's similar with all intersections, right? Is that we all need help processing these things and understanding how many facets of humanity and the fact that many of us don't have that purely because of the lack of understanding and broader knowledge and awareness of disability in neurodivergent. It's just kind of not good enough, because we're not only already a vulnerable population that has so many more barriers to society than most, but also it happens to us more than others, which is unacceptable. Autism specifically heavily influences our communication style, our social processing. And so I think quite specifically, that can be a really big challenge because, like, I've never been great at picking up on flirting signals. I'm a very literal thinker. I struggle, I can understand sarcasm on an intellectual level, but if it's just if it's not that obvious, it's harder for me. Think that's a very common thing about autism is we struggle with sarcasm. It's obviously a stereotype. But, you know, all of these little layers impact how you interact with the world. And when you have predators out there, who, by the way, are rarely, actually rarely seem like predators. You know, so many movies show these horrible people as horrible people, but so many of them actually, seemingly decent people in our everyday lives. Because that's the fear, is that you let your guard down and you think you're around respectable, nice people. And that's when we're most vulnerable, right? Because it's not going to be the big bad wolf in the hood coming up to harm us. Most of the time, it's people we're close to, people we share houses with, families, workplaces that when you least expect coming to harm you.
Peta [00:13:31] I want to be really delicate, but as far as feeling empowered and like yourself again. How did you get yourself through that process?
Annie [00:13:42] Yeah, it took a long time, and that's sort of where I guess I'm at now in terms of I want to shorten that time for my community because it shouldn't take that long. But I was 23 when it happened. I'm now almost 33, so it's been a decade. And I am just so, so far from that now. Like, it almost doesn't feel real. Because I have processed it and I have found the right help, and I am empowered. But initially, you know, I started seeing a therapist. In those first few years it was very much focussed on and not just therapy, my life in general on pushing through, pretending it didn't happen essentially and trying to keep going, which was the absolute worst approach because it ended up, I ended up in really severe burnout, and complete, just not functioning in any way, shape or form. I should say that not long after, the year after the sexual assault, I was in a pretty bad car accident where I was the victim of road rage, which is not fun, but, that sort of toppled on the trauma, right? So I'm having all these things happening, and I'm also having physical effects of that from my already hypermobile joints that, you know, if a normal person was in that car accident would have had a bit of a mild whiplash. But I had so many issues with so many joints and surgeries afterwards. I sort of initially just went with the flow and listen to the people. I was told to listen to both medical doctors and specialists and therapists and allied health people, and it just wasn't working. Like, I really tried and tried and tried for a couple of years, and I kept getting worse. And I'm like, why is this happening? I'm listening to the people who are supposedly experts in this space, and all it's doing is hurting me more. About a year before I got the ADHD diagnosis, I was diagnosed with PTSD. That was a big shift for me because I was like, how is no one picked up on the PTSD until now? When not only did I have a life of complex trauma, which many of us do, but also big traumas in my early 20s, and that was really the shift where I said to myself, I'm not going to take this anymore. I'm going to become the expert in all of this, which you shouldn't have to. Let's put it out there. Not many people have capacity to do. I mean, life is hard enough just existing in this world. But I was so fired up and angry that it had taken so long to identify these basic things that were very obvious. And I'm not trying to say medical professionals aren't great because I've met some fantastic ones. And they all have really good intention. But impact is so much more important than intention, right? I experienced quite a lot of fatphobia as well, from medical professionals who, you know, I'd walk into there. There's a new specialist's office and I'd be, you know, no makeup, hair a mess, in daggy clothes, which I do now and who cares? But they would start treating, talking to me like I was just not someone who could understand them. And that really annoyed me because I'm like, that shouldn't matter. Don't infantilized me. Treat all your patients with the respect and dignity that they deserve. But I started to almost go on the attack where I'd walk in and I'd basically lay it out for them. Why I was there, what my problems were, what I had questions for, almost in a way that you'd see them sort of like sit up, right and go, oh, shit. And that really fuels me in the work I do today, trying to help everyone in my community disabled, neurodivergent, chronically ill communities be able to advocate for themselves and not not be able to be used and abused and talked down to by these people in positions of power and influence. Right. Who should be there to help us? You know, I really don't like the term reasonable adjustments because, I mean, reasonable in itself is such a subjective term. And I also don't like the term accommodations because I don't need to be accommodated. It's not a favour you're doing to me. I need my access needs met. I need my basic human rights met. And so that's why I'm a big proponent of using the term Neuro accessibility and my access needs, because I meet so many people who come up to me and tell me that they're fighting some sort of battle in their workplace, in their school, for their kids, whatever, where they say, you know, I could just move on, but I'm fighting this for the next person in my community who's going to face this barrier. And it lights us with this fire. And it's no one's responsibility that if you don't have the spoons to do that, move on, you take care of you. Right. But the reason I think so many of us in the neurodivergent and disabled and chronically ill community have this very strong sense of social justice is because we've we've experienced extreme injustice. Right? And we don't we don't want that for ourselves, but we definitely don't want that for our Neuro kin in our disabled mates. Anyone? One of the things that I actually find really helpful when I'm doing my own small, everyday self-advocacy, which is an everyday thing right for us, is really focusing on the fact that this is making the world a better place for all of us. And again, that's a big responsibility and a big burden. But if that can help you in any way, remove the shame and step away from a lot of the internalised ableism that's forced upon us where we are told we're not worthy, where we're told we don't deserve support, where we told we're not bad enough or have high enough needs, or, you know, maybe we're just being stubborn or making it up or all of the things that are thrown at us that we know are just utter rubbish. If you can find a way to break through that in any way, that works for you, for me, it's focusing on access and pushing it out, putting that burden on on the external factor and removing it from my internalised experience. Then I think that that can really be so powerful in helping us all find our voice. Voice being written, spoken, whatever to really start making. Like proper shifts in how we're treated. Which again, shouldn't be our problem, but it is right now.
Peta [00:20:23] Unsurprisingly, knowing Annie, you are an overachiever and you want to help as many people as you possibly can in our community. And I think that's why you're so valuable within the disability community. You did, create an organisation called Eating Disorders Australia in 2022. What motivated you for starting that organisation? I've spoken to some people in and around the subject with autism before. I didn't know if it's okay with Amy migraine. It was really great. And they talked about how the new agency really impacted how they viewed food. So I'd be interested to hear your perspective.
Annie [00:21:08] There was a big report put out by the Inside Out Institute on Eating Disorders. I think it was in 2021. And it talked a little bit about like, various vulnerable groups with eating disorders. And then if you scroll down to like page 61 at the end of the report, there's a one liner on the emerging statistics on the overlap with ADHD and autism and eating disorders. And that truly enraged me. I contacted the ANZAUD. Sorry for the acronyms. It's the Australian New Zealand eating Disorder Academy. And I contacted them and said, hey, you know, this is me. I'd really like to talk about autism and eating disorders. They didn't respond. And I'm like, you know what? I'm just going to start and not for profit, because I know plenty of people in our community who are affected by this and very passionate, including many dietitians, psychologists. PhDers and so I just sort of put my hand out to all of them and said, who wants to come on board and start Edna? I call Edna Eating Disorders Neurodiversity Australia. We worked. We got a huge grant from the National Eating Disorder Collaboration, who? One of the leaders of that organisation worked out. They were an ADHD After an initial chat with me. So proud. And we genuinely had a big impact on the strategy. And not only that, we were commissioned to do a huge report. And you can look it up on any, any DC website or Google, just Google any DC. I'll send you the link. You can put it in the show notes. And eating disorders, your divergence, which is fabulous. ADHD and autism do heavily impact our relationship with food and our body. As I think all neurodivergent disability chronically chronic illness does. And it's not very well understood. And even those who are speaking about it more often than not are doing it. Doing it from a very pathologizing lens, from a almost harmful lens, rather than coming at it from understanding access needs and neuro affirming approaches and really understanding, you know, the interaction. Like there is a reason why autistic and ADHD people are so much more likely to have an eating disorder. Our brains are wired in a way that we are more susceptible to it. Does that mean we need to change our brains to fix our eating disorder? No. Does it mean we need to understand our brains and our access needs in order to make maybe healthier choices? If they are choices and have more support that we've missed out on because we're not understood well by society. Yes.
Peta [00:23:50] Thank you for listening to this week's episode. Don't forget, you can always scroll back in the feed and listen to last week's episode, which was with Khadija Gbla, a human rights activist that is black, and they speak about the intersectionality of being autistic and black. It was a really great conversation. Or you can look into any of the other episodes in the catalogue. We're now at well over 160. Again, if you did enjoy listening, can I encourage you to leave a rating and review on Apple or Spotify, or share the show on social media? It helps more people find the podcast. You can get in contact with me by my Instagram, which is @petahooke or via email icantstandpodcast@gmail.com. Thank you, as always, for being here and for listening. And until next week. Have a good one, guys. Bye. I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation, of which I record the podcast today. And I pay my respects to both elders, past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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