2024 In Review: The Self-Advocates | EDB 333
In the first part of our review of 2024, we hear from some of the neurodivergent self-advocates that have appeared on the show.
ALI IDRISS – full interview | learn more about their work here
DIANE GOULD – full interview | learn more about their work here
ZACHARY TOVIN – full interview | learn more about their work here
SHELLY BAER AND JAIRO ARANA – full interview | learn more about their work here
ANNA DIAZ – full interview | learn more about their work here
SHAWN SMITH – full interview | learn more about their work here
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FULL TRANSCRIPTION
Note: the following transcription was automatically generated. Some imperfections may exist.
DR HACKIE REITMAN (HR):
I’m Dr Hackie Reitman. Welcome to Exploring Different Brains. In this first part of our year in review episode, let’s hear from some of the great and insightful neurodiversity self advocates we have highlighted in 2024 let’s start with…
ALI IDRISS
AI:
So the ER is chaos, right? There’s so much going on. Many of us say there’s kind of a requirement to work in the ER, you have to have ADHD, I’m able to work in there. People say that. So I personally thrive in that setting. As I said, I’m able to fall into that hyper focus during those emergency situations. I’m able to mute everything out distractions, at least, I’m not going to mute the doctors, nurses and patient now, I got to be in touch with that, but it helps me stay hyper focused on what’s going on. The movement is huge as well. A setting where I’m able to move during cognitive tasks helps me stay engaged. And even the learning style of EMT school, half of it is, you know, the books and the exams, but the other half is training the clinical setting. It’s these rounds that that’s how I am able to learn.
DIANE GOULD
HR: What can we do and what can you tell — what can you say to the people who might be thinking right now as they watch or listen to this? You know, I think I might have. PDA, what advice would you have for them?
DG:
I want them to know that independence is a false construct, and people need people and autistic and autistic. PDA, people really need a village, and they need people to help create this village. This whole sense that we have to do things alone is is very harmful and false. Most of us don’t and I also think that we just need to stop looking at, you know, the concept that needing others to help us and so give us the support we need, like is a luxury or something we should be thankful for, whether it’s a Child in class, or an adult who needs support at their job, like I think we’re all entitled and deserve the best life we can live. And I think for especially PDA individuals, that takes a lot of support, a lot of help from people.
ZACHARY TOVIN
HR: Zach, what is one piece of advice you would have for someone with autism who wants to become a self advocate?
ZT:
My advice to that is go to as many self advocacy training programs as as possible and and also practice too. Practice definitely, definitely helps with that. And also the way you think about autism, too, like, like, don’t think of autism as as such a bad thing. Think of it as something. Use it, you know, to your advantage, and don’t, and don’t let it, don’t let it bring you down, because, you know, it’s, it’s unique, and it’s in its own special way. And, you know, I try to get people to not really, you know, look at autism as as a really bad thing. And I feel like being different is actually, in a way, is actually better than because, like, you know, sometimes who wants to be normal?
SHELLY BAER AND JAIRO ARANA
JA:
One of the things I’ve learned with my autism experiences, and is mentioned quite a lot is that every experience with autism is different, so that’s something that I’ve also learned by interacting with other people on the spectrum. I feel that with self advocacy, you get to express we get to express our needs, our wants, our concerns, wherever, anxieties we have about being involved in the world and being able to participate in the world, being able to navigate it in the world around us. Think that it’s important to have our our voices, our our experiences out there expressed.
SB:
Think too, like some often people with disabilities were. Dismissed or things were done for them to them. So it’s really important to have our voices, you know, represented and heard, and not somebody else like talking for us. The mantra from the Independent Living rights movement is nothing about us without us, because many things were always being done for us and to us. So we that’s part of what we teach in Project salt, you know, getting your voice out, heard your your lived experience, like Kyra was saying, it’s, it’s also different for everybody, you know, one, even though I have arthritis, it doesn’t, there are many people that have different types, or, you know, not, it’s not visible. So I, like IRA, what you said about it’s one you see one person with autism. It’s one person with autism.
ANNA DIAZ
HR: So Anna, how did you first receive your diagnosis of epilepsy?
AD:
So I was in, I want to say, kindergarten or first grade, some one of one of the two. We went on a field trip, and I just collapsed. The school called my mom and was like, Hi, we’re calling because your daughter had a seizure. And she’s like, No, she didn’t, because from the A from all that time, she thinks I’m, like, completely normal, you know? So she doesn’t expect something like that. I was fine, and then we went to the doctor. And really the best test to take to know if you have epilepsy, or if it was just like a one time seizure, is an EEG, which is basically they put leads on all around your head, and they look at the electrical activity in your brain, and if it’s if you have abnormal electrical activity, that’s when you know that you’re having seizures. And if it’s multiple you have epilepsy. So I think it just changed everything, like, I give super kudos to um, to teenagers or young adults that get a diagnosis of epilepsy, because they hypothetically, they’ve lived their life from from one to 19, one way, and then, yep, you immediately have to change everything, because you can’t drive now, when you go swimming or to the beach or something, you might want to have somebody with you. So it’s, it just, it just changes everything. And I know for sure that my mom knows way more about epilepsy than she ever wanted to know because of the situation, but she she advocates, and my my family advocates for it too now, and we just hope for it to be more. We hope to hear more about epilepsy in the future for sure.
HR:
Finally, let’s hear from…
SHAWN SMITH
SS:
For me, it was not having the right support in place to help me and and asking for help, but feeling unheard and just continuing to grind away with like administrative stuff piling up, and it just, it got to be so overwhelming, and like, money was rolling in, it was great, but then there was just this whole other side that I couldn’t deal with. And it cost me. It cost me a lot. I ended up having to take a lot of time off work. I whittled down my clients so that it was basically just, you know, kind of a skeleton crew that I was seeing three or four people a week, and realized in hindsight, you know, if I just taken the time off and not seen those people, I probably would have been better off. But some of the things that I did that really kind of helped me, you know, was seeing a doctor going on antidepressants, I found this thing called hydration therapy, which is not new in the States, but it’s new to us here, which is basically like you go to see a doctor, you get an IV, and there’s different things that you can get in that IV that your body needs. And so doing that regularly, really kind of leaning into my hobbies and interests and just trying to spend more time, like more quality time with my kids and my wife, but also like reaching out to friends. But the one of the biggest things is time. It just it takes time
