Diana Pastora Carson:
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:
Hello everyone, and welcome back to Beyond Awareness: Disability Awareness That Matters. Today, I'm excited to have Deanna Yadollahi here to share with us. Well, Deanna, welcome to the show. I am delighted to meet you and to get to learn from you today. Can you please begin by telling us about your identities, your experiences within your family and cultures, and your experience of disability?
Deanna Yadollahi:
Absolutely. First of all, thank you so much for having me. It's such an honor to be here and to be on your podcast in particular. I really love the work that you do with your podcasts and your class, and I'm really excited and honored that you invited me to be here. I identify racially as an indigenous person of color, ethnically as Iranian and Mexican. I also identify as and gender non-binary and am a child of immigrants who come from different countries with different religions, languages, cultures, and views about disability. I'm a young person in my mid twenties and work as a racial and disability justice consultant. Disability wise, I identify as disabled, mad neurodivergent, and a psychiatric survivor. All of those identities I identify with proudly. I have formally been diagnosed and treated for OCD, which I self-identified with in high school, and had been confirmed professionally so I could have accommodations in school.
Deanna Yadollahi:
I've also been hospitalized for psychosis and taken medications for depression and anxiety. I was tested for reading abilities by my disability services of my undergrad college, Cal State Fullerton, called the Nelson Denny Assessment and scored as having a processing disorder. OCD affects my memory and attention. I also have never been diagnosed, but self-identify as autistic. I wouldn't be diagnosed with anything if it weren't for me identifying myself first and having access to information provided and shared interpersonally in the disability community. Familially, I have an autistic older brother. My parents met on a blind date, having to use translation books and are still together. I'm used to having to code switch between different sides of my family.
Diana Pastora Carson:
Thank you, Deanna. From my understanding, it seems that the topic of support services and accommodations did not come into your world until it was almost time for college. Did you always know that you were disabled, neurodivergent, OCD, and all of the other ways that you are disabled? And if not, how did you come to that knowledge?
Deanna Yadollahi:
Yes. Thank you for your question. My unapparent mental health condition was unidentified until early adulthood. Experiencing an undiagnosed condition meant misunderstanding and being frustrated with myself, being misunderstood by others, and ultimately feeling ostracized and punished from deviating, from ableist norms and expectations. My parents denied the possibility that my struggles in school were due to reasons outside of my control. They thought I misbehaved because I was a teenager, that I simply did not care enough to be on time and that I only took all day to complete homework due to the distraction of my phone and adolescent fantasy daydream peers, school administrators, and my parents punished me and misunderstood me for the ways my disability affects me academically, socially, and behaviorally. In terms of academics, I struggled to finish timed exams and assignments and was easily distracted in the classroom environment. And this all started from middle school in terms of behavior.
Deanna Yadollahi:
In middle school, the assistant principal yelled at me for the way I walk and advised my parents to take off the door to my room for absolutely no reason. Peers and school staff assumed I did not care and was disrespectful because I was late everywhere. But in reality, I was experiencing compulsions from obsessive compulsive disorder or OCD that severely affected behavior and social awareness. This experience might give insight into how the school to prison pipeline operates. I received countless after school and weekend detentions and even an in-school suspension for being tardy to school and in between classes every day. During my third year of high school, I self-identified with a mental health disorder that we were learning about in an introductory psychology class. Although my school success team agreed with the possibility of my self-diagnosis, I was denied access to accommodations formally until I could provide professional documentation of a formal diagnosis.
Deanna Yadollahi:
The system is both oppressive, but also necessary because services are not provided until you are given a diagnosis by professionals. Given the power of the medical model of disability in schools and society, I push back to the medicalization of disability. Unfortunately, obtaining this diagnosis was difficult given that I had to acquire it independently and against my parents will as immigrants whose ideas differed about disability, they were only aware of the binary of students in special education, who historically, unfortunately, were kept in homes or institutions and students who were not in special education. They were unaware of the in between. That is students in general education with other health impairments who receive accessibility services through the use of accommodations mandated by Section 504 of the Rehabilitation Act of 1973. My parents lacked exposure to information about unapparent conditions, felt guilt and shame at the thought of their child, possibly having a disability that they assumed they caused and were at fault for being unaware of and denied any possibility. When comparing my case to more apparent cases such as wheelchair users, consistently non-speaking communicators, et cetera, they were influenced by stigmas and misconceptions associated with service use and eligibility in the United States. Navigating this difficult experience gave me a passion for supporting those who also come off differently than they attend. In addition to a passion for improving the educational access for all individuals who deviate from the privileged, ableist, assumed-to-be standard.
Diana Pastora Carson:
Thank you, Deanna. I'm sorry that you had to go through all that in order to be identified so that you could receive access, services, and supports. So once you were finally diagnosed formally, what was the response from your family in terms of support and understanding, and the response of school personnel, and perhaps even your peers?
Deanna Yadollahi:
Even after providing a diagnosis, My school counselor and school psychologist manipulated me into being okay with the 504 planI'm sorry, without a 504 plan, which did not work out well. They convinced me that a formal 504 plan was unnecessary because college was coming soon and the scheduling of higher education courses would supposedly be more supportive of my access needs. And higher education disability services would offer easier to acquire accommodations. Accommodations for anyone who are unfamiliar are auxiliary adjustments or alterations that allow disabled people to increase access to work or school. My accommodations in higher education were to take exams with double time and in a distraction-reduced testing location, as well as being able to take notes on my laptop when we were prohibited from using devices. About my family, my mom was slowly digesting the fact that I was professionally confirmed to have an unapparent disability that affected my life significantly in ways that she previously thought were character flaws.
Deanna Yadollahi:
My dad wasn't as accepting and believed I manipulated the psychologist who tested me. He believed I had a self-fulfilling prophecy to be disabled. At that point in high school, I was pretty much socially rejected because of my seemingly odd OCD-related behaviors, but those I did open up to when becoming a fierce advocate were supportive. I had a few teachers who were supportive and I was acknowledged with awards: one for persevering against challenges and adversities, including being unidentified and self advocating for having OCD; and one for being empathetic towards other disabled people. I was also supported by seeing my new identity in the curriculum when learning about and Reading One Flew over the Cuckoo's Nest, I was very out about my disabled identity and mostly surrounded myself with other disabled people in college. That is also where I had more opportunities to get involved with disabled communities and student disability advocacy and activism.
Diana Pastora Carson:
Deanna, I wanna ask you a question and it's not in what we had covered, and if we don't wanna do it, it's okay. Some of our listeners might be noticing that you are reading some of your responses. And I want us to understand that that is a simple access requirement. That is an accommodation, and that is one that is, you know, the way I perceive it is, of course, . You know, of course. I wanted you to, I invited you to be on the podcast because I value what you have to share with us. And whatever format was the most comfortable for you was important for me. And I feel like that's something that educators and families need to understand, that they need to hear, that it's okay to have accommodations. What would be even better is to have just access universally designed into whatever we're doing right. And sometimes, sometimes we do need to just make, you know, shifts to make sure that people do have access, that they do feel supported.
Deanna Yadollahi:
Sure. I'll respond happily. Yeah, thank you so much. SoI was actually featured in a LinkedIn Learning course on hiring and supporting Neurodiversity in the workplace. I believe that's what it's called. And there I also talked about this, but there are simple ways that we can integrate one of the 10 principles of Disability Justice Collective access into our design and Aimi Hamraie's work actually takes us, shifts us away, a little bit, from universal design to just designing for access because we can never really do universal design because access is always ever-evolving and changing and we don't always know what access is for individuals. And so some ways that this comes up is that we can, you know, start meetings with access check-ins and really, you know, open up the dialogue of talking about our access needs and making a space welcoming and inviting of interruption for emerging access needs.
Deanna Yadollahi:
There's also, you know advanced access to materials and information that can be really helpful for people like me and that I talk about in that LinkedIn learning course of like having access to an agenda, having interview questions, you know, in advance is something that I have for like job opportunities and other opportunities that I interview for as an accommodation; and really just being able to like create a script for myself. Scripts are something that a lot ofactivists use in disability justice communities. It's also an access service or like an access tool, I'll say,of providing in advance for like CART captioners as well as like ASL interpreters so that they have access to like the spelling and all of that beforehand. But yeah, there's a lot of basically advantages for being able to have like spoken language written out beforehand, especially for something that's more high pressure and high stress.
Deanna Yadollahi:
It's an advantage for everyone, not just disabled people, but especially those who are affected by attention, memory, and anxiety. It can be something to fall back on in order to make sure thatno matter what kind of a day we're having, whether it be with brain fog or with having difficulty being in the moment, having difficulty recalling with memory or sustaining attention, that we can really make sure that we're bringing our best selves forward and communicating in the way that's most accessible for us, and that we're, you know, also really digesting, reflecting on and preparing for what we wanna say in a deeper way where we, we can really, you know prepare it sleep on it look back on it and see if that's how we even feel the next day.
Diana Pastora Carson:
Beautifully said. Wow, Deanna, thank you. And I love Aimi Hamraie's work and their push and promotion of design for access as opposed to simply universal design. So thank you again for bringing that up.
Diana Pastora Carson:
So what was your self perception as a student and as a child in your family and as a friend to others? How did you, given all the resistance and misinterpretation of who you were, and how you behaved, how you responded, you know, how did you come to a self, a sense of self-worth and self love? Did you have friends or mentors or educators that gave support and hope? And how so?
Deanna Yadollahi:
Before being formally diagnosed and confirmed as being disabled, neurodivergent and mad, I felt extremely misunderstood and alone. I felt as though even though I am a good student and a good friend and an ethical person, others didn't see me that way. And that was frustrating. Once I had an understanding of self-awareness, that OCD led me to unintentionally come off differently than I intended. I began to understand that it wasn't the fault of others or myself, that people thought I was fake, disrespectful, and intentionally careless. Once I understood why I was the way I was and how I appeared to others, I began to find the importance in communicating the presence of my disability to people in order to no longer be misunderstood. Self-Advocacy really saved me. It was then that I no longer faced barriers and was no longer punished by school, family and peers, but rather supported and accepted for who I was and what my struggles were.
Deanna Yadollahi:
Instead of leaving me at home to miss out on a family gathering, my family would tell me to be ready at an earlier time than we would need to really be ready at or when we would actually be leaving. Instead of being pressured with timed tests, I was able to take my tests with unlimited time unofficially and by verbal agreement with teachers in high school. Although the administration of that was a little bit difficult and inefficient, the intention behind it was, was good and, and with a little bit more control could have been an okay accommodation. It's just that I ended up having to take my chair out into the hallway and take my tests like in front of other people in passing periods which is weird. instead of being socially rejected, I was more in touch with social self-awareness and the perception others had on me, and made new quality friends who didn't know me previously because they were in higher level classes instead of popular friends, and fostered community with choir.
Deanna Yadollahi:
I wasn't close with anyone in particular, but was social with many people in groups and was no longer caring about my popularity or social acceptance. So I really changed and became confident in being independent and alone while having distant friends and acquaintances, but I was able to walk the hallways by myself and be okay with that. Being accepted and supported by my family, teachers, friends, acquaintances, staff, et cetera, helped me be able to further develop my sense of self-worth and self-love. I always had it, but was able to really foster it when my environment became aligned with my efforts and intentions. And something I wasn't planning to, to speak on, but that is coming up for me right now is also that I had a teacher whoactually exhibited OCD-related behaviors in the classroom. She would frequently become frustrated by certain things in the environment andshe would always like close the door, and you know, notice that and it would really distract her and upset her like even at random times even deep in thought and deep in teaching a lesson.
Deanna Yadollahi:
And there were other ways in which she came off definitely differently than I think she intended towards other students. And I think that we kind of had this bond of like understanding each other in certain ways because I think that some of my struggles that I exhibited, like she could relate to and vice versa. And so I think we developed a real sense of access intimacy. And she was kind of a role model for me in seeing that like disabled people could be successful in various ways. And so yeah, and it was actually her who taught One Flew Over the Cuckoo's Nest, which was a really huge part of my access to math studies and disability studies starting in as a junior in high school. And I actually just re recently reconnected with this teacher and after 10 years she's transitioning out of the classroom.
Deanna Yadollahi:
So she was just a really huge part of my life. And I got to be taught by her at the exact time that I was just coming into awareness of my disability identity. And I'm not sure if she's identified or anything like that. But we definitely related to each other and access intimacy is, is a word by Mia Mingus about the the unspoken relationality and trust and like solidarity that disabled people usually have with each other. But it's not just disabled people that have to have it. It can be anyone and it's really around just understanding and accepting access needs as they are.
Diana Pastora Carson:
I love that. Thank you for bringing up the concept of access intimacy as well. And I'm really happy that you had that experience of access intimacy with your teacher.
Diana Pastora Carson:
And I I wish her well in the next part of her journey.
Diana Pastora Carson:
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Diana Pastora Carson:
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Diana Pastora Carson:
Okay, thank you so much Deanna. The next question is when you went to college, what was your experience of academic access? How did you manage there?
Deanna Yadollahi:
School was actually really easy in college for me and fun. My high school counselor was right. The timing of it all better supported my access needs and I navigated well. What I didn't navigate well was the ableism and inaccessibility I would experience in different forms. Talila Lewis, or TL, no gender pronouns, developed in community with disabled black and other negatively racialized people, especially Dustin Gibson, a January 2022 updated a working definition of ableism, and is defined as "a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence and fitness. These constructed ideas are deeply rooted in eugenics, anti-blackness, misogyny, colonialism, imperialism and capitalism. This systemic oppression leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, 'health and wellness,' and health and wellness is quoted, and/or their ability to satisfactorily produce or reproduce, 'excel' and quote unquote 'behave.'
Deanna Yadollahi:
You do not have to be disabled to experience ableism." End quote. I thought my time in higher education would be barrier free. Since I finally had the diagnosis that would allow me to use disability accommodations I was in for a rude awakening, I experienced domestic violence and physical abuse at home, which led to inconsistent houselessness and reliance on friends in school. I experienced and witnessed the effects of disability stigmas, which manifested in educational and social barriers, and I was exposed to the negative experiences associated with using disability services at Ableist and extremely inaccessible university whose funding allocation and history of only fixing barriers when sued sent the message that disabled students don't matter and are not worthy of the value and investment in our success for disabled people such as myself. As the student in higher education, I have personally experienced illegal denial of accommodations, exclusion, discrimination, inappropriate treatment, and other injustices from faculty, staff, and peers. Experiencing these barriers, at my proudly diverse undergraduate institution, I began to do what I could to prevent others from going through what I did. These injustices inspired me to engage in institutional advocacy.
Diana Pastora Carson:
So how have your experiences inspired your advocacy?
Deanna Yadollahi:
I was a peer self and institutional advocate for accessibility during undergrad. I was an official service use recruiter, accessibility specialist, and inclusion advocate. Officially, I helped create the first disability ally training at my university and served as Chancellor appointee on the California State University-Wide Advisory Committee on services to students with disabilities. As far as formal positions during undergrad go, I have been a peer mentor for the disability services office, was president of Abled Advocators, which is the registered student organization, uniting our disability community and was the chair and founding member of the student advisory board for the disability services office.
Deanna Yadollahi:
I was a volunteer and leader for other organizations like Best Buddies, court-appointed special advocates, and more. In Abled Advocators, we collaborated with the disability services office back in the beginning of 2019 to find solutions to the issue of having to compete for access to elevators. We now have signs in front of all elevators that ask for priority access and had an email sent out to all students from the dean asking to let people who use assistive devices go first with priority access. And that email was my idea actually. Of course, this is imperfect because lots of disabilities that may require prioritized use of elevators are unapparent, but it's something given that wheelchair users and others with mobility devices and other assistive toolsoften sat or waited in other ways in front of the elevator while other people mostly seemingly able bodied people or non-disabled people crowded the elevators and didn't let others go in front, even though many of them probably could have used the stairs and the use of the stickers remain to this day.
Deanna Yadollahi:
As chair of the Student Advisory Board for Disability Support Services I provided at meetings where 10 to 12 members would report campus barriers, which we would then combat via advocacy projects. We educated the campus on disability services, history, ally tips and barriers in an effort to combat stigma and discrimination. While it reduces work to fill an existing position, we can also advocate for disability as diversity initiatives for competitive opportunities bring up consideration for disability and access into positions or organizations that aren't specific to disability advocacy and model allyship and show how to ensure accessibility in the least burdensome way possible for disabled people. As a leader, event planner or team member. We don't need a position to do something and can start something without positions or can also create positions within existing organizations informally or outside of positions that already existed. I wrote a resolution in collaboration with some others, which was passed by the student government of my undergrad college called A Resolution in Support of Inclusion and Accessibility for Students with Disabilities. I conducted a needs assessment and put pressure on the disability services office to remove barriers, whether or not they were barriers that I faced. I was forced to become an unofficial accessibility specialist and disability services and Department of Rehabilitation recruiter as most of us are just out of self-advocacy and being friends with other disabled people.
Deanna Yadollahi:
I started doing presentations voluntarily under supervision and based on research without any power inducing position and have been able to present to faculty, staff, peers and others. I also wrote an article on The Mighty about disability barriers at my undergrad college and how that institution specifically can improve for disabled people. As an attendee and student, I introduced the disability perspective when it was absent in classes and events that are relevant to it or social justice in other ways. For example, those that are focused only on other injustices like racism, classism, gender discrimination or focus on identities like race, class, gender, sexuality, et cetera. I also demonstrated accessibility in practice by modeling what kinds of things everyone should be doing, such as designing for collective access proactively as a collective responsibility for cross disability solidarity when organizing and doing activism. I modeled disability pride by sharing my story often and across spaces that would allow it and showed what it means to be an ally in practice by making space for others.
Deanna Yadollahi:
I wrote an unshared rhetorical letter to faculty as a student to share my dreams for faculty collaboration and sensitivity with others, using disability accommodations in the future. I shared resources with the current director for the development of the first official ally training of disability support services at my undergrad university and engaged in advocacy for myself in the face of discrimination from faculty when using disability services and coached faculty and staff regarding accessibility and accommodations. I mentored other advocates for ourselves with issues with faculty unwillingness to accommodate and working with the Disability Support Services office officially and formally as a disability services peer mentor and just as a mentor unofficially. I collected ongoing feedback from students at my undergrad college in the disability community regarding their expressed issues, frustrations, and other insights and perspectives of my peers, and shared feedback regarding these students experiences and access barriers
Deanna Yadollahi:
With the Office of Disability Support Services. I assisted individuals and organizations on best practices and providing disability accessibility and inclusion and came up with the name Mission Vision and led the operations for a couple non-profit disability organizations for advocacy and collaboration with its members from the disability community as as well as a student organization during grad school for disability studies. During grad school, I also advocated for name changes of existing organizations that used euphemisms of disability through education and collaboration with organization leaders during grad school. I engaged in education and advocacy through social media and my website, which has community-recommended and educational resources. I tailored every flexibly assigned school project to be disability related, openly disclosing my disability in conversations and being a listener to many who disclose disability to me. Along with the misconceptions I was able to clear up regarding reasons for not using services.
Diana Pastora Carson:
Wow, Deanna, that's a lot of activity and activism that has been inspired by all of your experiences. Thank you for sharing them. My next question is, what does radical love mean to you?
Deanna Yadollahi:
Radical love to me means acceptance of ourselves and each other genuinely and fully as we are. Fromm, 2000, defines radical love as a combination of respect, responsibility, knowledge, and care. Adrienne Maree Brown writes about Pleasure Activism, and that's an important part of radical love too. Quote from Adrienne Maree Brown: Pleasure Activism is the work we do to reclaim our whole happy and satisfiable selves and the impacts, delusions, and limitations of oppression and or supremacy. Something else that she talks about that's important to me is radical honesty. If I had access to information and feedback about how I came off to teachers and peers that led them to be disrespectful towards me before my diagnosis, I would've had self-awareness and not been as punished and would've been given access to transformative justice and op opportunities to clarify intentions, change and make things right. I didn't have social self-awareness and didn't understand how people were perceiving me.
Deanna Yadollahi:
We need radical honesty, learning to speak from our root systems about how we feel and what we want, speak our needs and listen to others needs. The result of this kind of speech is that our lives begin to align with our longings, and our lives become a building block for authentic community and ultimately a society that is built around true need and real people, not fake news and BS norms. And that was also from Adrienne Maree Brown in Pleasure Activism. If someone would've told me that something I was doing was weird, I would've been able to change it instead of people deciding to reject me and leave me instead.
Diana Pastora Carson:
That was powerful. Thank you, Deanna. Wow. Teachers, families. Are you listening? Cause this is really good. Thank you so much, Deanna. Okay. In one of your papers you said that we need to creatively rethink disability as we know it, and then you quoted Sheppard's definition of disability. Can you please share that definition?
Deanna Yadollahi:
Yes. Thank you. Alice Sheppard from 2019 says, "Disability is more than the deficit of diagnosis. It is an aesthetic, a series of intersecting cultures and a creative force. I hold myself accountable to the lives and loves from this definition of disability." And that's from Alice Sheppard's Intersectional Disability Arts Manifesto.
Diana Pastora Carson:
Wow. "Disability is more than the deficit of diagnosis. It is an aesthetic, a series of intersecting cultures, and a creative force." I hope we can all hold ourselves accountable to the lives and loves from this definition of disability. Thank you so much for being with us today, Deanna. May your words help to foster access and equity for the many Deannas of the future.
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.
