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Welcome to the Beyond Awareness: Disability Awareness That Matters podcast. Here, you will find a safe space to learn and grow with leaders in education, Disability Studies, disability advocacy, and diversity, equity and inclusion conversations. Specifically, we look at how disability fits into diversity, equity and inclusion, and how to frame disability awareness. In the context of educating K through 12 communities, this podcast serves educators, parents, and community members who strive to learn and or teach about disability in a research-based and respectful way. Moving beyond simple awareness and diving into inclusive and socially responsive conversations. Thank you for joining us today. Now let's go Beyond Awareness.
Diana Pastora Carson:
Welcome everyone to Beyond Awareness: Disability Awareness That Matters. Today, I am so excited to have my friend colleague long-time confidant, here with us today. Her name is Jillian Parramore. I'm gonna let Jillian introduce herself. Jillian, would you tell our listeners about yourself, how you identify, what you do, what you're the most passionate about, and about your journey? What is your story? And how has your story or your journey led you to where you are today?
Jillian Parramore:
Awesome. Thank you. So I can't help myself. I have to say it again. This is Jillian Paramore. I think that comes from like the ABA that I went through. I just, I can't help myself. I have to introduce myself. So so, 'm on the autism spectrum. I have cerebral palsy, specifically, u,astic cerebral palsy. I have epilepsy, u,d these are how I identify as far as my disabilities. I do have dyslexia, which is like my hidden masterpiece that I can't seem to get phone numbers, right to save my life, and you're gonna have to write them down. um,at I do currently is I am a board member for Disability Rights California, and I oversee legislation for the disability community and mental health through the PAIMI grant. And I love my work. I love what I do.
Jillian Parramore:
I feel like I really contribute to the community. I took part in the bill that was signed for subminimum wage to be revoked in California. So like stuff like that, it's a big difference from where I started. I am most passionate about, it's probably actually what I'm doing, honestly. It, it would either be this or writing lesbian romance novels. I think this is where I sit, you know, it was, it was either going to be something really,uyou know, aspirational or it was going to be something really fun for me. And I think I can do both, but right now I think this is like what I'm really passionate about. I'm really, I know that grassroot operations are so important, but I knew for myself that getting to the top of things and really changing it at a state level and federal level for my community was where I fit the most.
Jillian Parramore:
How I got here was a couple things going through all of the different the different ways that we are placed in society, as people with disabilities led me to need to do something more. I am somebody that has been paid subminimum wage though I have college degrees. And a lot of it came from just experiences and seeing how my community is affected and needing to do more about it. So I'm sure we'll talk a little bit more about like my childhood and how I came to be where I am right now, but that's a very broad idea of how I got here.
Diana Pastora Carson:
Yeah, well that, that's a perfect segue, Jillian, because I really want, you know, we have a lot of educators who listen to the podcast and a lot of families. And so what was your experience as a child growing up? Like who were you and who did you understand yourself to be in the context of the special education programming that you were placed in in terms of what your communication abilities and learning expectations were at the time? Tell, just tell all, we wanna know, inquiry minds want to know about your childhood.
Jillian Parramore:
Yeah, so I, I was diagnosed with autism when I was four, I don't say where I am on the spectrum because there's kind of like a classism with that. But it's never where people think I land. And I was placed, I think I lasted like maybe a couple weeks to a month in a kindergarten classroom. And then I was moved out of it to be in, in a moderate, severe, special education classroom setting. I was actually held back in preschool because I wasn't, I wasn't walking. I wasn't going to the bathroom on my own. I wasn't doing any of those things. So I didn't even get to kindergarten until I was six. And then I was transitioned over to a moderate/severe classroom. And during the time, this was like the nineties. In the nineties, this was when autism was really being kind of finessed as far as like the definition and what we considered to fall under the autism spectrum and what we should do with children who are classified as autistic.
Jillian Parramore:
And because of that I was, I think I was my generation was like the beta test for a lot of different types of therapies for my community. The biggest thing that I noticed was I didn't speak until the age of 10. And that was a huge concern for everyone. And though I would love to give a very romanced story that, you know, a teacher, swept me under her arms, and told me I was the best thing that ever happened, and she was going to change my life forever, and that's how I learned to speak. I think though, that kind of did happen, I think the biggest thing that people should take from my story is that I didn't speak until the age of 10 for a plethora of reasons. It wasn't just being on the autism spectrum. It wasn't just because cerebral palsy made,uit hard for my muscles to control sound coming out of me.
Jillian Parramore:
It was also because there was a lot of domestic violence in my home. And so that is a very common thing in the disability community. And it was scary to step outta line in my home and outside of my home, when we look at the caregivers that I was placed with as far as my aides, a lot of them didn't have a connection or knowledge of what my disabilities were. So it was a lot of disciplining, just a shadow that disciplined me constantly. And it just, even though there was this pressure to speak and this pressure to do these things, there was also this pressure to comply, always comply. And that's two extremes that just don't correlate. And so instead of speaking, I act out with aggressions. I wasn't listened to when I used other tools like speech boards and ASL, which they had taught me and I was physically manipulated a lot of the times.
Jillian Parramore:
My body, as far as, you know, if I'm told to sit in a chair and I don't do it immediately, hands will be on my shoulder and I will be pushed down. If I don't put my shoes back on after, you know, taking them off, they are going to be forced back onto my feet. The person's going to be a little frustrated with me because this is the sixth time I've taken 'em off that day. And they're gonna be a little rough with me and impatient. And I felt even as a young child, even when I didn't have the words for it, I felt like people around me were kind of over me. They were kind of over the burden of me and taking care of me and how they wished they had an easier case, how they had it easier. I was looked at as a file oftentimes, is what it felt like. (Diana: As a what?) As a file, as like an IEP, not as a person .
Jillian Parramore:
And that was, that was very in the forefront of my mind. So when I was in third grade, I would say again, time is an illusion in special education. You're there all year. You don't get summers off. You're just in like a different program. And oftentimes, especially in smaller communities, you are in the same classroom over summer, just a different teacher. So, and because I also live in sunny San Diego, there's no like seasons. So I'm pretty sure I was in third grade at that point. I'm not a hundred percent because I wasn't included in classes. I was mainstreamed and those are completely different different scenarios.
Diana Pastora Carson:
Can you, can you just unpack that a little bit for those who might not get the distinction between inclusion or actual inclusivity and belonging versus mainstreaming?
Jillian Parramore:
So mainstreaming means that I can be out in society. I can, I can be in my, my classroom with peers, quote unquote,
Diana Pastora Carson:
Like nondisabled peers?
Jillian Parramore:
Exactly, by myself with no services. And if I can manage that, if I can do that, then I get to do that more. But if I am challenging or not complacent enough if I don't comply enough then I get sent back to my classroom and the most restrictive setting, which is how we define it in education.
Jillian Parramore:
Inclusion means that my services are with me 24/7. I don't leave my services. I don't leave my accessibility in order to be a part of classrooms and communities. I am included with everything that I need in order to be successful. And ideally, in a magical, pretty, beautiful land inclusion would be a hundred percent of the day. My services would be a hundred percent with me. I wouldn't have to be separated. I don't know where in like the, the fifties and sixties, we saw that separate but equal, you know, isn't separate but equal with like people of color.
Jillian Parramore:
So I'm not sure why we still think separate but equal happens in the disability community because I can assure you when I was in a special education classroom, moderate/severe, I wasn't getting access to things like reading and writing if it wasn't hand over hand I wasn't getting access to history. I wasn't getting access to the sciences. I was getting access to very basic math. And the most I learned was the day of the week song that we sing every morning. But again, it was just a, such an untangible idea that I just felt like I was singing a song. I didn't really know what that meant because there was no time, no time. And, and we didn't know how to read time on like clocks and things like that. So when, when I did start speaking, which was later on, I mean, I had aggressive tendencies, so mainstreaming was not very often for me, but when it did happen in a third grade classroom this teacher took an interest in me. I later found out long after the fact that she actually had a sister with similar diagnoses as me who had been institutionalized when they were kids. And so she had taken an interest in me because she never got that opportunity with her sister, I think.
Diana Pastora Carson:
Wow.
Jillian Parramore:
So imagine if she hadn't had that firsthand experience. I probably would've had had a very different outcome. But she went to my IEP meetings, the ones I wasn't even allowed to go to. And she advocated to teach me how to read and write. I had learned how to mimic writing down words that I had seen around the room because I wanted to be like the other kids. And so I mean, I, wasn't making a lot of sense. I think I wrote down like a bunch of nouns, like car and cat, and just things that were on the wall. And she was like, clearly she has an interest in this. And I would like to go further with that. I believe my parents and my educators, at the time, felt that that was not necessary. And so she actually had to do it on her own time during my after-school program.
Jillian Parramore:
And I eventually learned how to read and write. I was transitioned out. It took two years to transition out of my moderate/severe classroom intoa mainstream class setting. So I was in sixth grade by the time that happened. I was 12 and with the guidance that I received, I was reading at a high school, senior level with comprehension. And although I couldn't tell you the difference between a verb and a noun. My concept of what I was reading was very high and my interest in history helped me kind of catch up with my peers not completely. I still had to take English as a Second Language courses in college because I was still, even though I was advanced, I was still behind.
Diana Pastora Carson:
Jillian, I wanna go back to the idea that people around you, that you always had in your consciousness, this idea that you were somehow burdensome to people, that there was irritation and judgment related to you in all of your settings. I mean, it's remarkable that, that you had this, you know, you were finally able to start communicating through speech, and remarkable that you were able to learn to read and write at such a late stage and to blow everybody away, you know, in how advanced you were. And I wanna go back to the emotional effect of growing up, being conscious of how people perceived you and felt about you and just being that file. Has, have you seen that, that has had any residual effects in your personal life, in how you practice self-compassion, how you relate to other people?
Jillian Parramore:
Well, yes. So I always presume competency with anyone I am in communication with. I know what it feels like to be spoken about and not to. I didn't have somebody talk directly to me, aside from my mother until I was probably like nine. And that was something I realized. I realized that people were talking about me. I realized that nobody, the furthest, anything ever got with me was, oh, how is your day? How are you doing? But nobody like pausing to actually take a moment to see what I would respond with. It was just,
Diana Pastora Carson:
I just wanna stop there, you know, thinking about it. I think about my childhood and how many times I was spoken to as a human being at, at the age of nine... Thousands, thousands, thousands of times. And yet you're saying it wasn't until age nine that anybody actually spoke to. You just want our listeners to think about that. Like, what would that do to you to be only spoken about until nine years into your life and not spoken to?
Jillian Parramore:
Yeah. And especially since my mom only had like partial custody, I only had that every other weekend. So it wasn't even like consistent. Like every day I was getting that, at least at home. It felt lonely. It felt...I never felt like I had a purpose. There was no real reason for me to be there. And I remember when we were driving to school one day, I looked out my window and I just saw this tree. And I just imagined what it would be like to be a rabbit. It would just be so much better to be a rabbit. I should have picked up a better animal. I feel like rabbits get eaten a lot. But I was just like how wonderful it would be to be a rabbit. Nobody would be unhappy with me. Nobody would be mad at me. It would just be, I'd just be hopping around and doing what I like during the day.
Jillian Parramore:
And I'd have a whole bunch of other rabbits to be with. And, and, and that's what I, I was like, why did I have to be a little girl? Why couldn't I be a rabbit? And that, that didn't leave me until I was a lot older. It was, it was challenging to feel like I was enough. And so I think as an adult, I, I always presume competency. I always speak to people like they are speaking back. Even if there aren't responses, I'm going to find a way to advocate for a way for them to respond. I'm never uncomfortable. I've noticed that people are very uncomfortable with like people with disabilities, and I'm not uncomfortable because not just because of my own experiences, but because that's so unkind. And I think about that all the time, if what I am doing is a kind thing to do to someone, is this a kind thing to do to myself? Is this a kind thing to do with my life? And if it's not, I know that it's not going to be something that I will be proud of later. And so I don't do it. And that's a big part of my philosophy.
Diana Pastora Carson:
Yeah. And I just wanna add to that, that sometimes that unkindness, I like how you brought in that kindness piece. Sometimes our intention is not to be unkind, but our unkindness is rooted in a fear or a judgment of, you know, based in an unknown. And you've been really conscious of that in your own life, you know, based on your own experience, but also saying, okay, what don't I know, what am I afraid of? And if I just presume competence, maybe I'll learn about this person. Maybe I'll find a way a creative supports way, a creative mindset to support that person in being able to communicate what I know, what I presume they have competence in. They just don't have a way to express it reliably at this point. Right. I love that. So what would you say to, we have educators and families listening...to educators who have students in their classrooms or on their campuses or families with children who don't have access to reliable ways of communicating
Jillian Parramore:
The idea and the pressure of spoken language is a little outdated, especially with the technologies that we have. There should, honestly, I will be a little bit more direct with this. There should be no reason that there is no reliable speech access of any kind...
Diana Pastora Carson:
Communication access.
Jillian Parramore:
Yeah, exactly. There really shouldn't be. It's as simple as downloading an app on a tablet and putting a cushioned case around it. There are tons of grants for technologies, for people who are low income, if that is an issue for people to have access to computers and tablets and laptops and things like that. So that's one thing, the other thing is word boards are very easy to print out and laminate. And ASL is something that honestly, I feel like everyone should kind of know at this point. You know, I did some of my education in Finland, and they have compulsory languages that you have to learn in elementary school. And it is English, Swedish, and Finnish, and lots of countries do this. And I wish that we would kind of take that approach when it comes to other languages other than spoken communication. ASL is beneficial for so many, so many reasons.
Diana Pastora Carson:
ASL is American Sign Language, for those who don't know.
Jillian Parramore:
And it's, it's a benefit to know, and it's a benefit to teach. And the more your child knows ASL from their school sites or your student knows ASL, and you don't, the more you are saying that they are not worthy of you to know their language, the more you are saying that I am not a safe space for you to communicate, and the more that you are cutting yourself away from them.
Diana Pastora Carson:
I love that.
Jillian Parramore:
If a child has access to sign language, you should be just as involved in that. And there's no reason not to. We have free courses for parents and for educators to take all over the U.S.
Diana Pastora Carson:
Yeah. And abroad. Some of our listeners are in Canada and Germany and Spain, you know. There are different options for different communities around the world. Thank you. Thank you. Thank you. So now what do disabled students need to know? What do non-disabled students need to know? Start with students with disabilities.
Jillian Parramore:
You are enough. You have value. You are important. You are worthy of people's time, and you have so much to give and so much to receive. And if anybody tells you otherwise, or if you ever feel otherwise, then that is not a person that should be in your life. For students that don't have disabilities. You are enough, you have value, you are important. And if you wanna feel that way, if you are ever feeling like you aren't, please remember that whatever you do with a student that does have a disability that may also make them feel that way, is just as hurtful to them as it is to you, whether they can tell you that or not.
Diana Pastora Carson:
Love that, Jillian. Beautiful. Thank you so much for that. So many of our listeners have great interest in diversity, equity and inclusion, and they wanna include disability awareness on their campuses or in their homes or communities, given what you've learned through your own education, through your journey within the education system and employment systems, what do you believe we should be focusing on when it comes to disability, quote/unquote "awareness."
Jillian Parramore:
My, my biggest challenge every day is not my disabilities by any means. It is the obstacles that I face with my disabilities in society. When I went to school in Finland, and I talk about it so positively because I didn't need any special services to access my courses or my apartment, or the community. Everything was set up so that I had complete accessibility. And then I come back here and I need a professional letter from a separate entity that is printed out, that I need to bring to all my professors to explain to them why I am worthy of taking this class, and they should be accepting of the fact that I need stuff to be successful because their class isn't built with me in mind. And curb cut outs don't just help me elevators don't just help me; They help those who are elderly,
Jillian Parramore:
Those who are pregnant, those who have children and strollers and grocery carts, and these things aren't just... Society is such especially in the U.S., we have such an individualist view of what is right in our communities. If it doesn't benefit me, I don't, I don't really care. And we have this and we are told from the very beginning in life that, you know, you have to work hard, you have to be independent. You have to do things for yourself. We are taught that codependency is a bad word. So for somebody like me, who has a disability that does need to be codependent on those around me, in order to thrive, people see me as a burden. You're automatically going to see me as a burden. But you know, if you, if you don't mind me, Diana, has there been times where you have had challenges where you needed to lean on people or just needed to speak to somebody and then afterwards apologized for taking up that person's time?
Diana Pastora Carson:
Mm-hmm, yeah. Or feeling like I've imposed or I've been a burden. Yeah. And, and, and you're right. That interdependence doesn't, it can be an asset, you know, when we are all, when we all have a mindset that we need each other, and it's okay to need each other at different points in life. Yeah. It is a beautiful thing. Well, Jillian, oh my gosh. Thank you so much for your sharing from the heart today and for your time and for being who you are in the world. I love you.
Diana Pastora Carson:
Thank you for tuning into this episode of Beyond Awareness: Disability Awareness That Matters. If this was helpful to you, be sure to subscribe, rate, and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me, Diana, on Instagram @dianapastoracarson and on Facebook at www.Facebook.com/GoBeyondAwareness. Or you can go to my website for more information at www.DianaPastoraCarson.com. My books include Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. They can both be found on Amazon. For your free Beyond Awareness resource called the "5 Keys to Going Beyond Awareness," simply go to www.GoBeyondAwareness.com/keys. This podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of Emmanuel Castro. Thank you again for joining me. Be well, be a lifelong learner, and let's be inclusive. See you next time.
