From Challenges to Change: A Journey Through Autism Advocacy
Jul 01, 2024
Barrett
When you encounter someone with an extraordinary ability to turn trials into triumph, their story isn't just heard, it resonates. My podcast's latest guest, an advocate living with autism, is a testament to that resonance. He brings to light his journey from a child grappling with social cues to an adult championing policy reform and accessibility. Through his narrative, you'll gain a profound understanding of the social and internal challenges he's overcome and the supportive community that has been pivotal in his growth.
This episode promises more than just an emotional recount; it's a learning curve for us all. Our guest provides an insightful critique on the current state of social safety nets like SNAP benefits and social security policies, and their impact on the lives of people with disabilities. He addresses the dire need for dignified policy change, highlighting the consequences of overreaching guardianships and conservatorships. By the end of our discussion, you'll feel his call to action, beckoning each of us to become an ally in the ongoing battle for the rights and recognition of the disability community. Join us for an episode that's not merely a conversation but a step towards genuine understanding and change.
When you encounter someone with an extraordinary ability to turn trials into triumph, their story isn't just heard, it resonates. My podcast's latest guest, an advocate living with autism, is a testament to that resonance. He brings to light his journey from a child grappling with social cues to an adult championing policy reform and accessibility. Through his narrative, you'll gain a profound understanding of the social and internal challenges he's overcome and the supportive community that has been pivotal in his growth.
This episode promises more than just an emotional recount; it's a learning curve for us all. Our guest provides an insightful critique on the current state of social safety nets like SNAP benefits and social security policies, and their impact on the lives of people with disabilities. He addresses the dire need for dignified policy change, highlighting the consequences of overreaching guardianships and conservatorships. By the end of our discussion, you'll feel his call to action, beckoning each of us to become an ally in the ongoing battle for the rights and recognition of the disability community. Join us for an episode that's not merely a conversation but a step towards genuine understanding and change.
Speaker 1:
We've done everything you've asked. Everything's going according to plan.
Speaker 2:
Cover me one county, and the backpack has never been stronger. So tell us, Governor, what else can we?
Speaker 1:
do for you, Governor? What else can we do for you? I got it from here. Welcome to the Barracks regular podcast. Glad that you were here and glad that you can join me for this occasion.
Speaker 2:
Thank you so much for having me.
Speaker 1:
So tell us about yourself. What disabilities and what challenges do you face in the world today?
Speaker 2:
Well, I personally, as a man with autism, I would say that most of my challenges tend to be either social or internal challenges, things I've had to work on myself, as well as building a support group around me where I could feel safe interacting with them. Does that make sense?
Speaker 1:
Yeah, that makes sense. So, with what challenges do you struggle with as a kid? As a kid, but you're able to become as an adult?
Speaker 2:
The biggest one, I would say, was mainly when it came to my interactions with other people. I tended to be very naive when it came to how I perceived other people I interacted with, and it made me gullible or easily tricked by others. Another one was that I didn't really understand social cues or what was or wasn't usually unacceptable, and that resulted in me being seen as weird or awkward more often than that not by others, when I thought I was just being behaved normally. I'd say those two are the biggest things.
Speaker 1:
I mean, you were very passionate about accessibility. Right, we can see. So what would you like to see the lawmakers change and what do you personally try to fight for every year and every reelection, excuse me, in terms of the policies you want to see and the disability community improve and change?
Speaker 2:
Well, there's a few different ones, but the biggest ones, I would say. I would really like to see them make the whole SNAP benefits and social security policies become a lot more streamlined. As they are, there's a system that acts as a social safety net, including for people with disabilities, but in reality, bureaucracy is often so difficult, or the systems are often so inconsistent or sometimes just outright don't work, that it ends up resulting in people with disabilities, like you and me, running out of the programs that they're supposed to qualify for, and that's definitely a big one.
Speaker 1:
Or for me, I'm stuck in those programs because I'm limited to what I can do and what I can have for fun. So in the challenges I'm in now is finding jobs that I can actually do and I'm not sitting home just winning my own playing video games.
Speaker 1:
So I would guess, with partners and friends you made advocating for people like yourself and people like me, and you talk about this all the time. What do you think needs to happen for the house to be accountable for all these laws that are in place now that don't really get acknowledged and don't really get added?
Speaker 1:
upon and probably through, like government agencies don't really do what they're supposed to do. A lot of times we have to fight, but like constantly, at least I know I do. So I would say what are the biggest challenges? You still have to fight for that. You made friends through those obstacles and what ways have you tried to impact those big hurdles and big scenarios?
Speaker 2:
These ones I've come across mainly come down to people. Misunderstanding, or like underestimating people with disabilities is probably the biggest one.
Speaker 2:
They either assume that people with disabilities either for example can't work, don't deserve to live a comfortable life, don't deserve to have relationships, don't deserve to have their decisions heard and have support. And the truth is that people with disabilities have many strengths and weaknesses in themselves and capable of all different kinds of things depending on who the person is as an individual, so you can't paint every person with a type of disability with one stripe and assume that they all can't do something. It's also very important to make sure that when we're considering how policies affect people, we want to take into account like human dignity as the biggest thing, because there are policies that deliberately take away people's decision making rights. For example, in certain cases, things like guardianships and conservatorships can go much too far and take away rights that have nothing to do with what the disability affects and are really should be only considered as an absolute last resort.
Speaker 1:
Yeah, that's one of my biggest pep. You know one of my biggest ones? Well, because I almost fell a big deal. Big deal meant to that, but luckily my daughter went sign up on mine.
Speaker 2:
That's very good. I'm glad to hear that.
Speaker 1:
I can't imagine what I would be today about both the one and cause I was very completely Then. I didn't know, I didn't know that you cannot go, it's, you know, lost. So it was like I'm very glad I didn't do it, but yeah, it was very, very difficult. And you know, going off of that, what would you tell a parent or a guardian member that's that's contemplating that this is what would you tell a family that's contemplating you know, I'm signing, I'm signing there. Basically, they're right away. Then I'll be sure they're being taken care of.
Speaker 2:
What I would tell them both, like the guardian in question and their, say, child, for example is that there are other options they can try first, Like, if they make decisions with support, like the childhood, that would often cover all the gaps that guardianship would normally fill. And if they feel like that's not sufficient, then there are other systems, such as being a representative payee If you are worried about their financial decisions, or, for example, a power of attorney if you're worried about their legal or medical decisions. So there are other options that still preserve the person's rights while also allowing someone who is used to making those decisions stepping in and helping to make them on behalf of the person being supported. You don't necessarily have to go from nothing to just jumping straight to guardianship. There are other options available.
Speaker 1:
You know a lot of doctors don't know a lot of what's out there, so you know that's part of the obstacle as well, because it's like they just go up with what the world basically says and what the options are. But you have to look deep into, like you know, disabilities so to find these options. So I would love to get your opinion on what do we do to make every option more vulnerable, more vulnerable to the general public?
Speaker 2:
Well, different people have different ways of contributing to it, but in my personal case, one thing I do is I'm developing a resource for people in South Carolina to learn about support decision making, as well as like power of attorney and representative payee rules. In addition, doctors and teachers, for example professional staff like that could make clear that guardianship would be like a last resort option after they tried other things first, and make clear that there are other things they can try first and, even if they aren't experts on them in their own right, they could point to people who are. For example, they could say, reference a SIL or reference the support decision making website, and people could learn more about themselves, because we can't really expect teachers and doctors to necessarily know everything, but they should know enough to know how to like reference a resource to someone right.
Speaker 1:
Yeah, and that's what I told me, grapevine, because I can tell you the way that I try to do is I try to, um, try to be younger. At the region Before they told any different. So I try to like, try to add any young age. But I get that a lot of people wouldn't. I wouldn't say a lot. I would say Some people with disabilities don't want to be as vulnerable as I am, and you know Answering all the questions and that's fine. But what would you say if you know a young person almost curious about their disability and what they To do, and you know if they're comfortable, you know bringing up the conversation while the, while the parent of the guardian is shooting them away because they're gonna and there's some other child you know is doing anyway.
Speaker 2:
Well, I would definitely encourage you know, being able to openly communicate about those stuff, because, as you, as I'm sure you know, having a disability is nothing to be ashamed of. What we can do, as you know slightly older, younger people, the younger generation is that we can Be, in effect, people who can listen to them and hear them out, because a lot of them are looking, a lot of them are used to having their older peers Be people without disabilities and so they're going to feel like they're the strange, not a place ones. But what you and I can do, depending on what the person's disability is, Can act as sort of like a reassurance and A listening ear to help them get through, like Getting used to having their disability and Feeling comfortable with talking about it.
Speaker 1:
And I would encourage, if somebody has a disability like or I kind of go to find friends. I would encourage to find like groups on Facebook or your community or a fine, just find any, you know platform disability centered around Organization that you can be a part of, because I would say that it helps you be more confident, and you are, and I bet you can agree on this too the more confident you are, the better you know, the better circumstances are when you have to do with our scenarios.
Speaker 2:
Exactly. People are much more successful socially whenever they feel confident.
Speaker 1:
And that's why my slogan is you know, be confident you are and lipids like a little bit like you feel, like you can come to anything that's on your mind with the right support system. So any final thoughts on you know what, what the biggest obstacles and what you would like people to be more involved in, and and their communities and stuff.
Speaker 2:
Biggest thing for me is just like In, this goes for disabilities and all Every other demographic is to focus on. Preserving people's rights is the biggest thing.
Speaker 1:
Yeah, and to answer that I would. I would take it as a better and I'll be like Finding their own rights, finding for Friends, teaching them how to stand up for themselves, because one model is the biggest thing that you can do in the world today, because you know who's watching you and one ball move can make a big difference. And right thank you for joining my podcast. I really appreciate it. Have a good night and I'll see you when I see you again.
Speaker 2:
It was my pleasure, Bear. I'll see you soon.
Speaker 1:
You can email me at b-a-r-e-t-n dot. S-w-a-t-g-y-l-i-f-e at gmocom.