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Today we will be discussing the experience of those with disabilities and Disability Rights in California with Natalia Arzbaecher (Ellie's Sister!) and Peer Self Advocacy Trainer Zofia Trexler.
PolicyWise is an intergenerational podcast by Youth Leadership Institute focused on bringing young people into the policy conversation.
Speaker 1 (00:02):
On today's episode of policy-wise
Speaker 2 (00:05):
In 2018, the CDC reported that 26% or one in four of adults in the United States have some type of disability.
Speaker 3 (00:13):
The way I was treated with my 5 0 4 plan and getting accommodations, other disability rights issues, I personally did not have the best experience
Speaker 2 (00:21):
In 2019. The U S census found that over 3 million children in the United States had a disability since 2008,
Speaker 4 (00:29):
Something terrible is happening. I'm going to die of beating his, and then I had the doctor explain what it was. And I was like, oh, okay, kids didn't get it. And so like, all they knew is like, it's a sickness. A lot of kids would be like, don't touch her. She'll give it to you. And I was like, it's not the cheese touch. I can't my bad pancreas. That's not how it works. A lot of seven year olds don't get that
Speaker 2 (00:47):
With the highest rate of childhood disability, belonging to the American Indian and Alaska native communities followed by children of more than one race and black children.
Speaker 1 (00:55):
We will be discussing the experience of those with disabilities and disability rights in California,
Speaker 4 (01:00):
Especially when you're little and to other kids, with the idea of anything that seems other gets defined as bad pretty often.
Speaker 3 (01:06):
And people were like, you're so lucky that you get ADHD medication and you can just focus anytime you want. I'm like, it's not a recreational drug to me. Like it's like a therapeutic device
Speaker 1 (01:17):
From this conversation. We hope to eliminate the challenges as well as policy plans to tackle systematic barriers to those with disabilities
Speaker 3 (01:25):
And get teacher without training has the ability to do so much harm. Like if a student comes to them saying that they're dealing with depression or anxiety, and the teacher says, oh, you're strong. You can get over it. Like instead of like a referral to actual services,
Speaker 1 (01:42):
But more on that later, welcome to policy-wise a youth leadership Institute podcast. I'm your host. LERN
Speaker 2 (01:50):
And I'm your other host, Michael, we offer with us. We have a few guests. The first one is Zofia. Traxler Zofia. Would you mind introducing yourself?
Speaker 3 (02:00):
Hi, my name is Sophia Traxler pronouns. Are she her? I currently work for disability rights, California as a peer self-advocacy trainer. Um, and also am on the transitional age youth advocacy board for mental health, America of California. And I'm a student at Fresno city college.
Speaker 2 (02:20):
Awesome. Thank you for joining us.
Speaker 1 (02:21):
We also have with us as very special guests, my sister, Natalia, and Natalia, would you mind introducing yourself? Yes.
Speaker 4 (02:27):
Hello, I'm Natalia Aras Becker. My pronouns are she her? I am a freshman at UC San Diego and I'm a type one diabetic and I've had type one diabetes for the past 11 years.
Speaker 1 (02:38):
And to have you both with us, we're really excited for this episode, starting with you Sophia. Why, why do you think this is an important issue for you?
Speaker 3 (02:45):
Um, I myself have disabilities. I had a 5 0 4 plan in high school. Um, and my job is a peer self-advocacy trainer. So I work as a peer to transitional youth who have psychiatric disabilities, which is what I have. Um, so yeah, just the way I was treated, um, with my 5 0 4 plan and everything and getting accommodations and just like other disability rights issues, I personally did not have the best experience. And obviously the goal is to make sure that no one else has those experiences as well. So that's why it's an important issue to me.
Speaker 1 (03:27):
Absolutely. And I know Natalia you've, you have gone through some of the same experiences. So why is this an important issue for you?
Speaker 4 (03:34):
Well, it was always like that, but saying the personal is political. So the idea of like experiencing disability, myself, having to deal with that, basically my most of my life, um, and like having also experiences with 5 0 4 plans and trying to get accommodations and everything that goes along with that. Um, and then also just seeing like reflection of like how healthcare is really unacceptable for a lot of people and being able to like witness how my, like the fact that I'm privileged and where I was like brought up and everything that I had access to things that allowed my, my medical journey to be a lot easier than it is for a lot of people. So just, um, being aware of how difficult healthcare and having access to things like insulin, which make my life possible. It's very difficult for a lot of,
Speaker 3 (04:17):
I would just love to clarify for the listeners, what is a 5 0 4 plan? Um, so it's under section 5 0 4 of the rehabilitation act. It basically gives you a commendations in a school setting. It's only in K through 12, it's different than IEP, which is an individualized educational plan, um, which can be more intensive. It's just different. It's just like two different ways of having accommodations in the learning environment. Um, but yeah, it's, uh, it's gives you accommodations in a school setting. Thank you.
Speaker 1 (04:58):
Yeah. Thank you for clarifying. Um, Natalia, you mentioned that you've had diabetes for 11 years. You were diagnosed at the age of seven. So quite young. I remember some stories from when you're in elementary school, about some of the things other kids would say, and just generally some of the stuff around being a young person with a disability and that setting. Can you talk a little bit about what that was like being diagnosed at such a young age and kind of the stigma that you experienced and the conversation you experienced from kids your age when you were, when you were in elementary school?
Speaker 4 (05:27):
I was really young, so we didn't understand the depth of what it meant to have like a disability, like a lot of the stigma of big stigma around it that I think is unintentional. That I think it's like the idea of like things being like good intentions is that no adults in my life really ever really sat me down to be like, this is a chronic illness. This is disability. I think it was just assumed that I understood what that meant. Instead it was sort of just like, this is what you have. And so the idea of like trying to alleviate, like, you don't want to address it, you know, it's sort of like the elephant in the room because they think that it makes it easier if you don't know, I guess. Um, and so like, I know that when I got diagnosed with funny story is, I didn't know what diabetes was.
Speaker 4 (06:02):
And so when I heard it, I thought it was die of BDS. And I was terrified. I thought I was going to die because no one wanted to explain it to me. And I was like in the hospital and my mom was crying and I was like, my mom never cried. Oh my God, something terrible is happening. I'm going to die of beating his, and then I had a doctor explain what it was. And I was like, oh, okay. This is not as bad as I thought it was. But yeah, it was definitely weird going back to school in that transition of trying to explain it to people, if like kids didn't get it. And so like, all they knew is like, it's a sickness and we have this idea of what like sicknesses and diseases and it's. So I had a lot of people thinking that they could catch it from me.
Speaker 4 (06:36):
So I remember being like very isolated and like, especially the first couple of years I was diagnosed because there was like a lot of kids that would be like, don't touch her, she'll give it to you. And I was like, it's not the cheese touch. I can't put you my bad pancreas. That's not how it works. Um, yeah, unfortunately I can't touch you and boom, your beta cells stop working. That's kind of, it's a little bit more nuanced than that, but a lot of seven year olds don't get that. So it was a lot of explaining myself to people for a really long time. Like, especially when you're little and to other kids being like, that's not how it works. Um, and obviously kids are a little bit ruthless. They don't really know they don't get it. And I think that's probably the biggest thing that's comes from any disability is that idea of like othering that happens especially so young because kids just, I think don't understand when people are different.
Speaker 4 (07:22):
Like it's such a huge issue of like trying to expose kids to it, but the idea of anything that seems other gets defined as bad pretty often. And so that was definitely the biggest challenge I had to deal with is just trying to get people to understand that like my disability does in fact make me a little bit different. It changes the way that I interact with the world to an extent, but it doesn't mean that it's like I'm somehow less of a person or something, or like less than in a way, if that makes any sense.
Speaker 2 (07:47):
Do you think a solution to the challenge that you're kind of describing for us would be solved by maybe teaching all children, what a disability is and what that means for your classmates? What do you think all students would need to learn that? Or maybe it would it be, um, only in classrooms where a student is diagnosed with something.
Speaker 4 (08:06):
I think it's, everyone's you learn it because I think that the issue is that sometimes it's really hard to like reach people after it. It's kind of like not it's to do something post, you know, somebody getting diagnosed or someone having a disability it's sort of not effectively solving the issue because then you're doing it after it's already become a problem. I think being preemptive and sort of teaching everyone, because at some point in your life, we're going to come across somebody that has some form of disability, whether it's super visible as a group parent, very, you know, has a direct effect on their able-bodied or if it's more, you know, I'm sort of more of like an invisible disability category where it's not very apparent if you look at me because I'm still able to very much like coherently communicate and use my body for the most part.
Speaker 4 (08:51):
So the idea of like trying to like nip it in the bud of explaining that, like not, everyone's going to have the same body as you not everyone's going to exist the same as you, everyone has different problems. Um, and the idea of like trying to under how kids understand that, like it's not something that's wrong or like dirty, because I think a huge issue with it is that kids just don't get it. And I didn't get it for a really long time. Like I didn't have anyone sit me down to tell me that I had a chronic illness until I was 15. It took eight years of being diagnosed before someone looked at me directly, the Tolman was like a chronic illness, which is crazy considering that I'd been dealing with it for seven, eight years. Um, so I was like seven years old, you know, that's a really long time to like not ever like address it as it fully is know. Um, and I think the idea of like walking on eggshells is really helping one, the longterm. Like I know that there's this idea of protecting kids, but I think in the long run, it doesn't make it better. In fact, it just makes it harder to deal with later on, like obviously Sophia and you've talked a little bit about how you experienced disability, how do you say that would affect you in foster settings? I'm curious.
Speaker 3 (09:52):
Well, first was the issue of getting diagnosed. One of the things I have is ADHD. So in women it tends to be severely underdiagnosed. Um, and then, and some minority groups it's not viewed as like up a problem that not okay, not a PR it's not viewed as like something that's wrong, but rather like a behavioral issue. And like, then you get into issues of like school to prison pipeline, like et cetera, et cetera. But for me, the first hurdle was getting diagnosed and then I got my 5 0 4 plan. And then I don't know, I'm pretty open about my disability or whatever. Like I'm not ashamed. Like I, if someone wants to, like, I don't care, but like one of the accommodations I get is like extra time on tests and people would be like, you're so lucky that you get extra time on tests for no reason. And then, then I take ADHD medication and people were like, you're so lucky that you get ADHD medication and you can take it and you can just focus anytime you want. I'm like, it's not a recreational drug to me. Like it's like a therapeutic device. Yeah.
Speaker 4 (11:11):
I really get that. I also experienced that with my accommodations of having people be like, you're really lucky to have those accommodations. Like these are accommodations that helped me exist. Like you do that helped me exist as like a person that has the same, like access to like things that like, you already get to deal with it as a person doesn't face any disability. Like I also was a person that got, you know, extra time on tests or I had the issue to be able to retake tests if I have blood sugar issues and leaving classrooms with blood sugar issues or being able to go to the nurse's office or leave to like we're eating food in class. And I remember like I would like pull a juice box out, like to like, cause that's what I, I, to me, that's like, I always make jokes that I never understood how people would drink juice boxes for fun.
Speaker 4 (11:51):
Because for me, like in my brain, I've coded them as like life juice because I drink them when I have low blood sugar. And so like, people are drinking in the class and you could be like, oh my gosh, you're so lucky that you could have food in glass. And I'm like, I drink this, so I don't die. Like I like, it's not, it's not really like, uh, Ooh, so fun, like snacks in class. Like I think people expect that like there's also that presumption that you're like somehow exploiting the system or that you're like exploiting or you're, you know, accommodations as if your disability doesn't make life harder. And as our, as it, as it is, like, I, like, I've definitely experienced that of people being like, you don't really need that, do you? Because they don't understand like how it impacts your life and there's that like misunderstanding.
Speaker 4 (12:29):
So people were like, they see you as like a very, like, I think because both of us, I assume have pretty, uh, like what I always refer to as like invisible disabilities, if they're not super parent, if you look at us. And so it doesn't, you don't exist in, uh, in, in the mindset of what people assume is what disabled looks like. Cause there is with everything, the idea of like the assumptions of what it looks like to be disabled or what it appears like to be disabled the same, as you said with like difficulties getting diagnosed, like a lot of times, um, 85 people which stands for assigned female at birth, have a hard time getting diagnosed with, um, any sort of like neurological issues. Um, like any sort of like nerd emergencies, like autism or ADHD, just because it's the way we code. It tends to be a male like that people experience things differently. So yeah, it's interesting to see how all of that affects how people perceive you and how people treat, you know, your existence and their accommodations.
Speaker 2 (13:21):
You mentioned kind of this, um, basically, right. There's a people's view in any way you like, um, and they think that you're excluding this crystal and in that belief on its own has some impact on all this resource with you. And maybe the funds that a university like a spoiler administrator might give towards disability resources and make them, oh, we don't want to get too much, you know, we don't want to allow them system maybe in your experience, how do you, cause you're, you're working in this world, um, have you seen that at all? Have you experienced that?
Speaker 3 (14:02):
Um, well, like I work at a disability rights organization, so I wouldn't say that any, anything happens in the workplace as far as stigma, I feel like I feel like change and more accessibility and more resources has to come before ending stigma. Um, I don't know, like, yeah, there different definitely a stigma towards people with disabilities, but like the main push is to get like resources for people with disabilities so that they can like live their lives. Um, and then like once we make things accessible, like, and provide educational resources on like what disability is then the stigma now it goes like we'll be, you know, reduced or mitigated. Um, there definitely is a push to like reduce stigma in like language and the way we talk about people with disabilities. Cause you know, like words are powerful and like carry connotations, like the slur.
Speaker 3 (15:23):
Like we don't use that anymore. Cause it's like offensive. Um, at my organization we use the default is person first language. So instead of disabled person, you say person with disabilities. Um, so you make sure that like a person's like personhood is their defining factor and not the fact that they have a disability, um, for, for me either is fine. Um, and some people like, well, they, they prefer the label of just disabled person. I just say like use the language that people are comfortable with. But yeah, I think the main push that I've seen, especially in the workplace has a lot to do with like language and the way we talk about people with disabilities, like we don't use like the mentally ill it's like people with mental health conditions. Like not like the Arcelor it's people with intellectual disabilities, like stuff like that. If that makes sense.
Speaker 1 (16:33):
Yeah. Gotcha. Um, you mentioned that some of the, the process of removing stigma around disability comes as a result of having more resources and access to better resources. So I know, um, Natalia and I went to a pretty big public high school in Sacramento where we're from and I know mental health resources were a bit iffy at times. I think there was a lot of students who felt like they couldn't rely on mental health resources at our school. I know we didn't even have a just regular nurse for a long period of time at our high school. So I know at least in Natalia's in my experience, some of these resources are, can be lacking at our, at our schools. Um, you're more tapped into this work. What would you say the general consensus is around K through 12 disability resources and in your experience, what does that really look like?
Speaker 3 (17:25):
Um, well it's overall, I would say it's not great, especially when we talk about mental health resources. I mean, there definitely is this thing that like they're very specific laws like governing how people with disabilities are accommodated and should be accommodated. And there are like my, where I work I'm on the non-legal side of things, but like a big part of what we do. It's like legal resources for people with disabilities who have had their rights violated. Um, but like obviously the goal is not to have your rights violated and have to, you know, go through the court system to ameliorate it. The goal is to like, just get the resources. Um, that's something that we were trying to do with [inaudible], which was the bill to mandate education about mental health and public schools. Um, just because of politics, the way the bill started out.
Speaker 3 (18:31):
And the version that got passed are very different. Um, and there's a lot of, because you know, teachers don't want to have more things that they have to teach because they're severely underpaid and under-resourced, um, but even bills that like, or programs that provide like free mental health resources, like people from the community who come in and provide mental health resources at a school, like they literally just need a classroom to like set up their stuff. Like even girls are opposed. Um, but yeah, I, I don't know anyone who's had like a positive experience with like mental health resources at the school. Like the consensus is usually they're pretty bad.
Speaker 2 (19:15):
So I want to talk about the legislation real quick. Um, I'm all too familiar with the political process and how, uh, the, this is the saying usually the sausage gets made because you tend to come out with a pretty simple, this is what we're going to do. And then everybody wants to attack in their little thingies. And then by the end, you know, there's a lot of different pieces of meat in there. Um, what, what, where did it start in? Where did it end up? Um, you mentioned that it ended up differently than yeah. Would you mind explaining that's what,
Speaker 3 (19:49):
Um, yeah, so where we started, the original text of the bill was mental health education in K through 12 schools. So the goal originally in the bill was to have mental health education at least once in elementary school. So like K through six, once in middle school, seventh or eighth grade, and then once in high school, which would be like ninth through 12th grade, um, because of substantial opposition from the big teachers union. And I get where they were coming from about like teachers already having too much to teach already. But like at the same time, like this is something that needed to happen a long time ago. Um, so it got amended to mental education only in schools that have an existing health curriculum. So there's a couple problems with that. Mostly that schools who have a health class already touch on mental health in some way.
Speaker 3 (21:05):
Um, but also, you know, when you're in like kindergarten or, you know, fourth grade, you don't have class periods, like there's no health class. Um, and I would say the vast majority of health classes are offered at the high school level and like ninth grade. So technically applying to K through 12 schools, it's basically once in high school, in health classes that probably already taught mental health anyway, but the California department of education, once the bill formally gets implemented in January, they're working on stuff. Um, like after this implementation process, there's like a chance to go further and mandated in all schools, but that's a couple years from now. So for me, it was a little disappointing because I worked really closely on the veil and I, like, I like spoke in front of the Senate, um, health committee and the assembly education committee. And, you know, you like tell them how much it means to you and how like you wish you had these resources. And they're like, no,
Speaker 2 (22:26):
Well, I just want to say that a and B just because we not who wasn't supposed the war, wasn't one in this one model, this is a step forward, even though that's not as satisfying. It means that in the next ask in the next budget year in the next legislative cycle that you could once again, ask for it to be implemented in the way that you want it to be. And the process is sometimes slow, but it does not mean that there's, this opportunity is gone in the future.
Speaker 3 (22:55):
Yeah, yeah, yeah. It was a little bit frustrating because they had tried to pass the same bill a couple years ago and it got canned. So the progress is slow, but very incremental. And governor Newsome in this budget year, he has allocated a lot of resources towards mental health, like the children and youth like behavioral health initiative and stuff. Um, so hopefully with the inclusion of those resources, there will be more mental health resources in schools. Um, despite what happened with this bill, like obviously I'm happy it got passed, but I don't know because it was my first experience like working. So in depth in the process was just so it was so disheartening, but you know, I'm excited to see where it goes in the future.
Speaker 2 (23:52):
I'm glad to hear that. Uh, Natalia, um, I'm curious how this bill now that it's passed and I'd love to hear if you're able to distinguish between the original idea versus the final finalized product. How might this have changed your experience?
Speaker 4 (24:07):
I don't know that much about like the political scope of, of disability. Unfortunately, I've not been not experienced with it. Um, I know that having resources allocated the school to, um, disabilities is really important. So I know that when I was going to high school, we had a nurse that was there once every two weeks, I think. And I was asked while there by the nurse, because I was like more there than the students that had a disability that had experienced it for so long. I was asked on advice for how to train teachers and things like that. So obviously like the idea of like, it would have been better in the first place of like, not waiting to have a student that has a disability to inform teachers on how to deal with disciplining or, or teaching students. Because as a student at a school, that's also very, very big schools.
Speaker 4 (25:00):
So obviously it was not one of the only students there that hadn't spirity that I was being asked of like, oh, do you think that the teacher should have training on glucagon people on training GEs? Um, if I were, or I or any other diabetic student were to have passed out from low blood sugar or gone is a injection that can give to raise blood sugar and about it, it's, it's very deadly to not have one. And I was informed that very few teachers at the school had had any group of on training or any like administration drinking and things like that. And so, uh, the nurse asked me that's, uh, that was one something I wanted to be willing to like advocate for it. Like I thought that it was important that teachers learn that on the same goes for like other, uh, ideas of how to sort of treat, uh, disability, um, which is a lot of stress put on like a, I was like 16 at the time.
Speaker 4 (25:52):
I was like, I don't know that much. I only know my personal experience. And it honestly seems, uh, kind of he'll plan to address it after you already have students at a school that does struggle with disability instead of having a plan in place to protect them. So the idea that the ears are the fact that there's laws being implemented to help, you know, educate teachers and students on, on how to address disability and mental illnesses really important because it shouldn't be on students or people that have disabilities to inform and educate people because it's already difficult enough to deal with it. That's not what your job, a teacher as well.
Speaker 2 (26:27):
Yeah. And, and it's, it's hard to turn that balance, right. And I think in an ideal world, at least I think, and please correct me if I'm wrong, um, that a teacher should be, would be able to identify it right before even more swimming has active healthcare will be able to access a doctor. Who's able to accurately diagnose whatever challenges facing. Um, instead of just, we don't know how to handle it. And they should be in a class,
Speaker 3 (27:01):
One of the big criticisms of SB 2 24 when it was going through the legislative process was that it would put too much liability on teachers because teachers don't have training, um, on how, on like mental health and how to identify it and stuff. Um, and the inclusion of a class, if it were spread out like throughout class periods and not in a health class, then teachers would have to get a bunch of training on like mental health and how to identify signs. Um, but I think that's like a bigger issue that teachers already don't have training on mental illness and, you know, they're like psychiatric conditions and how to identify them and, you know, the students that they teach. Um, and I think a teacher without training has the ability to do so much harm. Like if a student comes to them saying that, you know, that they're dealing with depression or anxiety and the teacher says, oh, you're strong. You can get over it. Like instead of like a referral to actual services or a school psychologist or any sort of like effective means of dealing with, you know, mental health conditions. So I, I do think that teachers do have a lot on their plates already, but I don't think the solution is just throwing these necessary things by the wayside, probably paying and appreciating teachers more is the solution. If we expect them to do all this training, um, which I think could happen. Like I definitely think teachers deserve to be paid more regardless.
Speaker 1 (28:55):
I'm, I'm curious about moving a guess away from the K through 12 conversation, obviously, as you've been talking about, there's a lot to be discussed when it comes to where the responsibility should lie in terms of disability training and Natalia, like you brought up, um, being asked to give input on, on your teachers and their, their knowledge they should have. And then Sophia the points you brought up about putting too much weight on teachers, hopefully legislation moving forward. I knows a FIA. You said it's can be kind of incremental. Hopefully this is something that can be addressed as we, as we continue to develop legislation and hopefully pass it. Um, but I'm curious, a lot of this conversation has been centered around K through 12 experiences. Um, I guess starting with Natalia, I know both of you are in college now, Sophia your Fresno community college, looking to transfer to a UC good luck with your apps, by the way, Natalia you're in your first quarter at U C S D. So I guess starting with you to tell you, what's it been like to go through the process of kind of entering adulthood, starting a new stage of life with a disability and particularly like moving out and attending a new institution? I mean, I'm sure there've been not to speak for you, but I guess there's just been a lot of changes that have been happening in regards to the circumstances and the responsibilities that you have. So can you talk a little bit about that
Speaker 4 (30:16):
For me personally, like a big issue that I faced was I had to change insurances just because, um, I, I grew up in Northern California and, um, I'm now going to school and so Cal, so obviously my insurance doesn't cover, you know, the, the doctors that we have down here are not the same as, uh, uh, up north. And so I had to transfer to, you know, you see health insurance and all of that, if like the struggle to try to find an endocrinologist and getting referrals and having to meet my doctor here and all of that stuff. And I was lucky that the doctor, my primary care physician that I got to meet with, you know, within the first like month I was at school was very informed on diabetes and immediately put in a referral for me. Once I, when she saw that I was a diabetic, which was very nice of her, there is still a lot of difficulty of like picking what doctors you want.
Speaker 4 (31:03):
Um, like I still have to go through all the process of going through the insurance to find out like how to, you know, get, um, get to my endocrinologist and things like that. And, um, I know that filing for disability was a really kind of strange process. I mean, I was sort of more used to the 5 0 4 plan, which is, was developed when I was pretty young and my parents were sort of in charge of it. Um, and so it was developed by doctors. And so it was kind of like every year my doctor would sign off on it. And the transition to college, I was talking to disability offices for like a few hours. You have to go through the process of telling them like what your disability is and how it affects you. And you have to write a whole thing and you have to like, you know, address what disability accommodations you think need.
Speaker 4 (31:48):
You know, you have to, if you have a 5 0 4 plan, it helps a lot, or any form of previous its ability accommodations. Um, and then you have to like call to get them implemented. And also the same goes for housing. There's a different application for both housing and both academic accommodations if you live on the dorms. Um, and so that was really strange because I had to, like, I remember I was traveling and I had to fill out all these documents to just like, I had to get my, my endocrinologist to sign off on something. I had to, you know, get all of my old and any of my old records to the, to the school. And it was kind of like I realized, I was really lucky that I was in a position where I had, you know, parents helping me early on time, like with, um, access to like insurance and medical documents and going to health appointments.
Speaker 4 (32:31):
And I had, I have really great doctors. There's really, it's really great. And I realize it's so difficult for students out there that have disabilities, that don't have a good support system and to have doctors that are willing to, um, willing to basically like, you know, write things for them, you know, emails, things like that. And so that should be your transfer to, uh, also like leaving behind all of my old doctors is kind of strange. I think it was, it was weird because you're suddenly sort of pushed out moral on your own. So you're sort of in charge of everything. And, um, it's weird because for so long, especially if they're like, you know, high school and, and prior to that, I was so used to having same doctors and, um, and having, you know, a similar like school environment. And so teachers sort of like knew to an extent. Um, and now it's very different because college is very different from high school and a lot of grades there's, it's such, it's so much bigger, so it's a lot harder to keep track of all of the students. And you have lots of personal relationship with your faculty. So it's less easy to have a conversation about, um, getting your needs recognized. So
Speaker 2 (33:35):
That's all based on your experience. Do you think it would be helpful for me? Let me roll it back a little bit. So there's something actually being implemented now. And then in the coming years, I think it's actually starting next year, California longitudinal data system, which is basically a massive data system that a masses it follows as longitudinal. And so as soon as you enter the education system, um, the state is going to keep all your records in one place and students will be able to use, use the records and share it. And, and, and there's a lot that kind of comes to it, but what's not included in this data is give me a second, got to refresh.
Speaker 4 (34:10):
Um,
Speaker 2 (34:13):
That's not included in, this is all iterative data, basically, this kind of, what, what have you experienced? Um, what's important to me, uh, what it will be able to use this student, this student hasn't been even more, what necessarily kind of you think would be helpful if this included further details maybe from your previous notes. Um, and, and that always kind of help.
Speaker 4 (34:47):
Yeah, absolutely. I think that like, um, it's just a fine line to walk on, like the legal issues of trying to protect students' rights and students, privacies of medical issues is obviously very evident, um, with, you know, HIPAA laws and things like that. But I think that like, as long as students right off on, obviously having that information, being given to teachers and to faculty in any one part of the unit, the policy excuses, um, of having that easily accessible for everyone, who's involved with it a lot easier to transition between classes cause, um, I'm on the quarter system here, which means that like every 10 weeks and having new teachers and new classes and can makes it kind of difficult to, um, where we get situated with, you know, like I used to have like, you know, year long teachers and stuff, you're getting situated with how my disabilities disability accommodations will be implemented. So the idea of having it been able to sort, and one, one direct area would be very helpful because obviously I'm not embarrassed about my disability. I'm obviously very up front about it. And so it makes a lot easier if teachers and faculty straightforward and other doctors and everything have a very simple place to go and look for it.
Speaker 1 (36:03):
Definitely. Um, I think Natalia, as you brought up, you have had, um, a lot of support from family and just like the situation that you were in that isn't necessarily true for all people and particularly students with disabilities who have had disabilities from a young age, I guess, transitioning over to you, Sophia. Um, similarly, what is your experience been, I guess, moving into this new life stage into adulthood and to being a college student, but also have you noticed any challenges when it comes to equity within the resources that you're trying to access or the accommodations or trying to get? And I guess what work is there currently happening right now about how to make disability resources equitable?
Speaker 3 (36:44):
So like the, the transition period from like childhood into adulthood, um, like that's my like area of expertise, like as an, as a member of the demographic, it's like transitional age youth or Tay, I might use the terms interchangeably. Um, but yeah, so basically like once you turn 18, like a lot of things are just like your responsibility, like first schools, like there's FERPA. So your parents can't look at your grades or like make educational decisions for you or view your educational progress for healthcare. Like I had to make a dentist appointment for myself the other day I was in shambles. I was for me to handle. Um, so yeah, so, and the problem with transitional age youth is that there are a lot of services for adults with disabilities and children with disabilities, but not necessarily for like young adults in that transition period, which is a very critical time because, you know, like it sets you up for success for like basically your entire life.
Speaker 3 (38:02):
Um, so yeah, they're in, you know, recently there has been a push to expand resources for transitional age youth and focus specifically on transitional age, youth advocacy. Um, but there's still a lot of work that needs to be done to expand resources for that particular demographic. Um, they're all like at like, I think any facet, um, um, something like disability, there's going to be equity issues along like race lines, class lines, gender lines. Um, but I think you try to fix those as much as you can by expanding culturally competent resources, free and low cost resources and resources that cater to specific identities so people can feel included and heard in their care. Um, yeah, I, for education, I know a lot of transitional age youth, um, struggle with the transition to education because you know, when you have a 5 0 4, your parents and teachers are the ones who kind of manage that for you for an IEP that transition planning is included, but like for 5 0 4 is like, once you, like, there's no plan for you to, you know, turn 18 and have to carry all of that by yourself.
Speaker 3 (39:36):
Um, so yeah, it's difficult when I first, um, my first like semester at community college, um, I had difficulty because all of my accommodations were for in-person learning. So with the transition to online asynchronous learning, I really struggled. That was also a time when I was like moving out to live on my own and dealing with all of these other life changes in the midst of a pandemic. Um, so I was like, I can't this semester, I can't do it. So I went and I was like, Hey, I have a disability. I, all of these other factors I need like the, um, emergency withdrawal or excused withdrawal, the one that doesn't negatively impact your records. So I got them for all my classes that semester. I was like, okay, like, great. And then I got an email that they revoked by financial aid. I was like, and community college, if it was a, like a, if it was a more expensive institution that I was unable to pay for by myself, it would have been more, um, troubling, but like, it's like $600 a semester, which I can, I can do, I can deal with.
Speaker 3 (41:10):
But like getting back on the financial aid is like such a process. Like, so, so after that I was like, oh my God. But, um, yeah, I think like, just like things like that, like, I feel like the, and the transition to online learning was hard for like a lot of people with disabilities, especially those who are blind or deaf. Like there's a lot of issues like transitioning, like closed captioning or like, um, text to speech in online formats. And a lot of people didn't think about that when, because obviously it was a hasty transition, but that doesn't mean that there's an excuse for leaving so many people behind
Speaker 1 (41:57):
When it comes to, to be growing up with diabetes. And now being at the point where you're an adult with diabetes, um, kind of not to completely go back to what Sophia, what you just said about like having to call your dentist. I have to call my insurance provider and change a bunch of info. And I am so stressed about that. I guess, like with the insurance conversation back to you and Natalia about diabetes, that's a huge conversation that we're seeing right now when it comes to health care for people with diabetes. And I guess I'm, I'm curious about your experiences and your feelings about reaching adulthood and like your thoughts about having to figure out insurance once you reach a certain age, because insulin is so unaffordable with those, for those without healthcare.
Speaker 4 (42:40):
Yeah. So it's working a little bit about, like right now, I can really relate to what you were saying if you, because it's my first semester of college and I have so much going on with my health insurance and health providers right now of changing all of that. It's such a stressful time. And on top of that, I have to get a whole bunch of medical supplies renewed. And so my parents have been on me so much for the past, like weeks on end to call my doctor, like four different times, things like that, like have appointments, everything. And I hated it. It was the worst time. Cause I was like doing like midterms and I was getting calls from my parents being like, you're given an insulin pump, like, have you call people like all of this stuff? And I was like, yeah, one second.
Speaker 4 (43:13):
I'm working on it. There's something going on right now. I'm trying to figure that out, like having of having all of the normal responsibilities of adulthood and college and all of that, you know, while you also have to deal with everything that comes with your chronic illness or your disability and everything. And so for me personally, like that was such a strange, hard transition is having to do all of that work of getting like a new insulin pump and talking to doctors and, and, you know, making sure I was having all my medical supplies and things, getting shipped here and changing all of that information. Meanwhile, like still balancing school was so stressful. And then, um, I constantly have to be thinking ahead because I'm on my parents' insurance until I leave I'm 25. I think that is how it is for most people. And I'm really lucky to have insurance that covers a vast majority of my medical costs, but a really big thing for me is I am aware of how horribly expensive insulin is in this country.
Speaker 4 (44:04):
And it is one of the biggest things that it like to, to this day, like it makes me like it boils my blood of how expensive it is, because if you know, the history of insulin insulin was discovered by a scientist at the university of Toronto in Canada, and they sold the patent for $1 each because of how important they thought this, this discovery was, they knew it was going to save so many lives. Um, and right now like a vial of insulin that costs around $5 manufacturer be between like 300 to like even $600, which is insane if you don't have insurance for a vial of insulin that I go through about a vial of insulin, like every like week and a half or so. So if you consider how expensive that is without insurance it's, it is if it's like Britonlee expensive. And I was doing some research for a senior project in high school about it. And like, I think, uh, I forget the exact amount of diabetics that have admitted to insulin rationing to, in order to meet the amount of, uh, be able to afford it because it is so sensitive that they quite literally cannot afford lifesaving medicine, this medicine that keeps you alive, um, and is one of the most expensive liquids in the world. And it is one that is fairly easy to manufacture.
Speaker 1 (45:19):
It kind of comes down almost to like, uh, a decision between rent food or insulin for a lot of people, which has
Speaker 4 (45:29):
No one should be dying of diabetes. Like no one should be dying if not having access to insulin. And it's still something that so many, like there's a lot of young people that don't have access to health insurance that are quite literally dying from type one diabetes, which is an easily not curable because there is no cure for it, but treatable illness, or, uh, you're implemented in insulin and stuff. But because of how expensive it is, it is so unaffordable. And, um, it is, it's so heartbreaking to see the amount of people that have to starve themselves and not eat food and things like that because they can't afford the insulin, let them die, like basically, uh, process that sugar intake. And, um, I I'm constantly like trying to figure out what I'm going to do with like, uh, by the age of 25, I have to have some form of insurance that is not my parents.
Speaker 4 (46:15):
And how am I going to get that? Like if I'm in grad school, what not. And like, I've been, I've been thinking about this for a very long time, because I'm even on 18 right now you have seven years away. It's not that long of a time. If you think about it, especially when you think of like how detrimental it would be if I don't have health insurance because of how expensive insulin is. Um, and so, especially if you're like 25, most people don't have very steady jobs. Sometimes they don't have access to insurance companies, things like that. Um, and if you're in grad school, you're still studying in school that it makes it very, very difficult. And, um, it's like hard to think about what's going to happen. And that's still something that I'm very anxious about. Um, and, uh, it's, it's really annoying if you, especially when you look at other countries that have universal health care like Oliver and I are both Swedish.
Speaker 4 (47:04):
My mom is from Sweden and Sweden as a phrase, the housing or universal health care. And, uh, that was, I was like talking about like, I was dope that that's my backup option. If I'm 25 and I don't have help, I'm just going to pull out that Swedish citizenship and go to a place because it will literally come down to me being like either we'll have to have health insurance in the us, there's some sort of job or some sort of company because it help unaffordable insulin is, or I'm going to have to move between different country because that is how literally expensive my disability is. So, okay.
Speaker 2 (47:36):
I just, um, first appreciate you sharing your experience and that is a real challenge that so many people across this country are facing and it's kind of embarrassing that our government has come up with a solution to solve it. Thank you both for sharing your experience. Oh, there's one question here. Policy-wise that we tend to ask all of our guests at the end of our recording, and I'd love to, to hear your responses to this, what would your message be to young people and policy professionals who are listening to this conversation and looking to do something about it? What are something that people could do daily in order to support people with disabilities? What about folks who are looking more to get involved?
Speaker 4 (48:13):
You know, if you want to, I can go first. I'm not lit or as immersed within the policy realm, I am just, I'm just stay a person that has disabilities.
Speaker 3 (48:27):
Like that's like valid. Like I feel like people with disabilities are like the best people to inform the policymaking process. Cause it's like, you don't know what it's like until you have one or if you were born with one, um, like that's impossible to like understand the exp not impossible to understand, but why
Speaker 4 (48:49):
I, that is the biggest thing that I've had to learn is that people just don't get it, you know? And I think it's also a big thing for people that don't have disabilities or have loved ones, those duties that, that is one thing today that those people was that as much as you mean, well, to be like, I would trade places with you in an instant or any of the things that people say and then support or whatever it is that you'll never understand, the experiences that you don't have, you can empathize and extend that understanding and support is the best you can do. But unfortunately it's hard to understand what it's like to be disabled if you don't have the disability in question. Um, and I guess I will transition that into my advice for, and policy, uh, advising, obviously I think you'll probably be much more well-versed in that sort of universe.
Speaker 4 (49:33):
So I will give my, my very layman terms of what I would do. Um, I know personally that for me to be so much more helpful to have universal health insurance, or if there's any way to, to start, uh, sort of like the idea of the, of, um, kind of breakdown monopolies on, on the audience when big pharma on medications, because it is such a life-threatening 1% of people have the idea that we want a country that exists in bulk. You can capitalize off of people's bonuses is just so disheartening and horrible, especially when we're not like insulin in the us that $300 versus, you know, surrounded by cheap, like in Canada on one side. And next one, the other words, $30, you know, it's, it's, it's, it's, it's really just awful. The idea that you, that, that politicians will oftentimes, um, support the idea of like the economic betterment or the idea of supporting lobbyists or supporting, um, companies over human minds, near your profit, over people being food thing instead of people over profit.
Speaker 4 (50:41):
And so the idea of like, if you ever in a position to, to break down big pharma monopolies of changing the requirements for monopolies, because I know that like, you'd think for, um, having your patent on insulin, at least insulin, for example, and for big pharma companies is that you don't even have to actually make any progressive changes of medication, but if you'd changed it slightly, you can renew your patent on it. He, because patents, I think on the last about five years, so every five years, a lot of oral and some companies will change the insulin just slightly. And you don't have to prove that it works better. You just have to prove it works just the same. And then you can get your patent renewed, which is really sad, especially considering that it's what allows, um, it allows big pharma companies to charge $300 for a, some that costs $5.
Speaker 4 (51:29):
And that extends for all health insurance. The idea of like, if you're in a position of policy, your, your place should be putting people over profit. The time to sit down, whatever big monopolies form on whatever medications and matrix price gouging doesn't exist with medications and supporting people. And the idea that there's a way that you can implement any form of healthcare. Um, it is, it is the best steps that you have to make, even if it's not universal healthcare right off the gate. You know, we talked a little bit about the idea of incremental steps of just making it. So it's easier for people to accept that access to medications that they need.
Speaker 3 (52:04):
What about you Sophia, what's your call to action? Um, I would say first, uh, just try to be maybe mindful of just how inaccessible the world is to, for people with disabilities. Like any time you walk up the stairs, like, look, if there's a ramp, like what a, what a person in a wheelchair be able to access the same facilities that you're able to access. Um, or if you're watching a video and there's no captions, like how would a deaf person be able to understand, like what you're saying or like, and just have the same enjoyment, like from the video as you are. Um, and I think that also transcends into like little things, um, we can do to make, you know, the world more accessible, um, like captions on videos on Instagram, you can add like image descriptions of like your photos and you can, you can do that on a lot of social media sites.
Speaker 3 (53:14):
Um, so if people aren't able to see, they will be able to like, know what the content of the photo is. Um, and they're like a bunch of things for like people who are, might have like physical disabilities that, you know, impair movement or like invisible disabilities, like both physical or psychiatric or, you know, whatever. I think it's like a joint effort to make the world more accessible. Um, and it can't just be like disabled people advocating for or people. It can't just be people with disabilities advocating for ramps as an inclusion to stairs, or like those little bumpy things on the sidewalks that allow like, you know, blind people with canes to like, be able to, you know, like know where the curve is, um, or where the crosswalk is. Um, I don't know the specific name, but like the world we have built is one that is inherently an accessible.
Speaker 3 (54:23):
And there's, I'm not sure the exact theory. It's like the ability theory of disability is that like, if everyone else could fly and you can't, and if everything was like up in buildings in the sky, and like, there was no way for you to get up there because you can't fly. Like, you know, you would be, you know, it would be considered like a disability cause you couldn't do the same things that everyone else did. But if there was an elevator or a set of stairs, so you could walk up or go up to where everyone else is, like, it wouldn't be like a disability. Cause you could get to the same place that everyone else is like, like disability as a concept is like the world has made it hard to exist as a person with disabilities. Like instead of like something being inherently like as, as opposed to a person being like inherently unable to do something like the world is inaccessible. Like it, did that make sense?
Speaker 1 (55:31):
That totally made sense. No, I was just thinking like, wow, I've never thought of it in that framing before. And I feel like that's just definitely something for me to think about. And I will be thinking about that after, after we finished recording, but I just want to say thank you both. So, so much for joining us today, we really appreciate you talking about your lived experiences and your advocacy and giving us your input about where we should be headed. So thank you both so much for joining us,
Speaker 4 (55:57):
You for having me. Yeah. It was really great to meet you Sophia and you as well. Michael LMR. I do know you surprise and Horace. Um, great seeing you again.
Speaker 1 (56:09):
Yeah. So funny.
Speaker 4 (56:10):
I guess it was like a funny little out if anyone cares. I don't know if people care, but as a part of the sibling dynamic type thing, um, I got diagnosed 11 years ago when I was seven years old and it funny how a sibling can sometimes be the most, uh, grounding and most like call me, uh, like stress alleving, uh, person in the whole process just by being mean, because what's normal is I was in the hospital for things for four days, five days. And he was, I was in the ICU when I first got diagnosed. And I remember, I didn't see my sister for like the first two, two and a half days, something like that. And so the first time I saw her, my, I think my mom and my dad were like, your sister's coming in the law. You get to see her for the first time.
Speaker 4 (56:53):
And I was like, great. So exciting. And I remember taking this big, old Ivy down the hallway that was bigger than me and I had gotten in trouble so many times writing nothing down the hallway, like a skateboard, like dragging this IB with me. And I was like in my pajamas and I've been like in the hospital for two and a half days and all that stuff. And I took it with me and I greeted my sister at this elevator and it was the first time I'd see her. And I had been in the hospital and, and instead of being like, oh my God, it's so great to see you. The first thing she says to me, she gives me this up and down look, and she goes, you look terrible,
Speaker 1 (57:25):
Keeping it real.
Speaker 4 (57:27):
I still think of it as the most stress alleviating thing of the whole process is just because it was the most normal thing. Everybody had been like walking on eggshells and been like, no, they're like, oh my God, you know, I've been diagnosed with a chronic illness, the whole issue, everything. And she was like, you look horrible. And I was like, everything's normal, it's fine.
Speaker 1 (57:46):
The sibling way. It's a sibling way. I also remember I walked in and you had like your terrible hospital food. And I was like, can I have your peace? Cause I love peace. So anyway,
Speaker 4 (57:56):
When you're in the hospital now I love it. Eat all of them. Yes.
Speaker 1 (58:00):
All of the peas. I love peas. I'm obsessed with them. Anyway, unrelated. Thank you again for joining us on this podcast.
Speaker 2 (58:10):
This was, policy-wise an intergenerational podcast by youth leadership Institute, focused on bringing young people into the policy conversation. Follow us on Instagram, Facebook, and Twitter at policy-wise pod. If you have any questions or suggestions for discussion topics, please email us at policy-wise at yli.org and stay tuned for upcoming episodes.