2021 Portraits of Empowerment
The American Association of People with Disabilities (AAPD) is proud to present our 2021 Portrait of Empowerment series, which features our AAPD Summer Interns.
For Summer 2021, AAPD hosted the Summer Internship Program virtually. The internship program is a 10-week leadership and career development opportunity for interns with disabilities. AAPD places college students, graduate students, law students, and recent graduates with all types of disabilities in paid summer internships with Congressional offices, federal agencies, nonprofit and for-profit organizations. During the summer, each intern is matched with a mentor who provides them with career guidance. We recruit a diverse cohort of interns. As a result, we connect our host employers to talented emerging leaders with disabilities.
At the beginning of summer, interns participate in a 1-week orientation session to acclimate to AAPD, meet their peers, and learn about the disability rights movement. Throughout the summer, interns are also required to participate in the Disability Advocacy Certificate Program. The Certificate Program is a 3-credit optional course where interns learn about key issues in the disability community and develop skills to advocate on the local, state, and national levels. Lastly, interns receive opportunities to attend events, community events, briefings, and more.
Throughout the Summer Internship Program, AAPD focuses on storytelling as a form of advocacy. The series aims to uplift and center the stories of our interns. We hope you learn from them as we have in the past couple of weeks.
The following participants are highlighted in order:
- Xuan Truong
- Bruno Matthew Arnold
- Katy Brennan
- Vraj Patel
- Elizabeth McCormick
- Gusti Budiarta
- Jake Linn
- Monica Mesecar
- Rasheera Dopson
- Danny Charney
- Naomi Hess
- Jennifer Lee
- Courtney Felle
- Justin Tsang
- Elayne Otstot
- Catalina Romero
- Sarit Cahana
- Karen Arcos
- Kelly Moh
- Lou Paniccioli
- Jaelyn Evans
- Fermina Lopez
- Kristin Kumagawa
- Jonas Bryson
- Deanna Yadollahi
- Pearl Zhang
“To me, the ADA is not just about disability, it is about being able to live the life my parents dreamed for us.”
Xuan Truong shares her full story about why the ADA is important to her:
“The ADA means I am legally protected from some discrimination. It means I am entitled to equal access to resources and opportunities. Personally, the ADA stands as an equalizer for the American Dream. I am a first-generation immigrant whose parents fled from a war-torn country. They left everything they knew to a country with hopes of a better future for their children. To me, the ADA is not just about disability, it is about being able to live the life my parents dreamed for us.”
Bruno Matthew Arnold
“While the Americans with Disabilities Act created a platform for me to fight for my rights, unfortunately universities define what my rights are.”
Bruno Matthew Arnold shares his full story about why the ADA is important to him:
“The Americans with Disabilities Act created a platform for me to fight for my rights, unfortunately, universities define what my rights are. Since starting university, I have faced many violations of my rights where professors sometimes just denied my accommodations and other times yelled at me for using them. The Student Disability Resource Center explained to professors my abilities and told them that anything more is not covered by the ADA. No matter the assignment or the disability you get seventy-two hours maximum as an extension. I have struggled in college to pass classes and at times I felt embarrassed for being held behind my peers for things that I could not control.
I feel empowered now that I have spoken to other disabled students in universities all over the country because it shows me that even the highest universities in the country aren’t getting this right. On the 31st anniversary of the ADA my hope is that we start to push back against universities who, from the start, fight against ADA regulations to save money. We have laws from K-12, but as soon as a person hits college the university gets to decide what accommodations are reasonable and what they will pay for. Oftentimes the primary focus of education is overshadowed by creating more profit. I feel empowered because every year since the ADA disability advocates have pushed the boundaries of discrimination within the university systems. Right now, we live in a time of higher education with a short ramp. My hope is that the phrase “Higher Education” in the future refers to the level of education you receive and not yet another barrier for people with disabilities to climb.”
“You maintain the right to fully exist, disabled, proud, and accommodated, weaving the aisles of Target, but the minute the red plastic basket morphs into an online cart, the accommodations mandate disappears.”
Katy Brennan shares her full story about why the ADA is important to her:
“Growing up in a post-ADA world, I felt fortunate to have the legal protections the law provides ingrained in me; it’s always been at the back of my mind, the law protects my right to exist fully as my authentic self. That mentality isn’t shared by older generations of disabled individuals, people like my grandmother who has been blind since she was a teenager. They grew up in a pre-ADA world where nothing was guaranteed. As the pandemic continues, that gap between my grandmother and me wears thin. While I maintain my headstrong, disabled, and proud persona, I have faced an increasing number of accessibility concerns, and in an online format, I’m left with few remedies. Even with the 2008 ADA amendments and recent court rules, the Internet is not acknowledged as a place of public accommodation. Captions, alt text, and screen reader compliance are viewed as luxurious add-ons rather than mandatory accommodations. You maintain the right to fully exist, disabled, proud, and accommodated, weaving the aisles of Target, but the minute the red plastic basket morphs into an online cart, the accommodation mandate disappears.
I dream of a future of universal design. Where the Internet is truly a space of opportunity instead of yet another barrier. This is possible. We must designate the Internet as a space of public accommodation, rather than yet another ableist private club through innovative policy or further amendments to the ADA; this universal design which is a given, or at least a legal mandate and protection, in person can easily extend to the Internet. Captioning, alt text, and all other accommodations which are sorely missing right now can easily become standard as platforms including Zoom make captions automatic (not to say Zoom captions are perfect). There is no reason not to mandate these accommodations. Until that day, I will remain in my corner, likely the only disabled person in the room, struggling to follow yet another uncaptioned call.”
“With the ADA, I do not live in constant fear when I think about getting a job because this act makes sure that my rights as a disabled person are protected.”
Vraj Patel shares his full story about why the ADA is important to him:
“It’s not my birthday, but I choose to celebrate the 31st Anniversary of the Americans with Disabilities Act since it is just that important to me! With the ADA, I do not live in constant fear when I think about getting a job because this act makes sure that my rights as a disabled person are protected. I know that employers cannot discriminate against me in any part of the employment process and that I should be able to use the accommodations that work best for me at most job sites. Already, I have met examples of disabled professionals who benefit daily from the ADA. But, I now understand that the advocacy work is not done. I am getting more involved because we have come so far, but we have a long way to go.”
“My own struggles with accessibility as a person in a wheelchair would make it easy for me to write off the ADA altogether, but instead the ADA motivates me. It helps me imagine a future where big changes for disabled people can happen, because if it happened once, it can happen again.”
Elizabeth McCormick shares her full story about why the ADA is important to her:
“Like many young disabled activists, I have a relationship with the ADA that sometimes contradicts itself. My whole life, I have felt grateful that I am protected by the law. However, as I get older, my appreciation for the ADA has been coupled with frustration, realizing how much farther we actually have to go in order to achieve a world that is accessible for all.
My own struggles with accessibility as a person in a wheelchair would make it easy for me to write off the ADA altogether, but instead, the ADA motivates me. It helps me imagine a future where big changes for disabled people can happen because if it happened once, it can happen again. It reminds me that I have a right to be protected under the law and that I can work to expand those laws. The ADA has provided me a foundation that I am eager to build upon. For me, the ADA, IDEA, and Section 504 are the beginning, not the end. Because of this, I am motivated to move forward and create change that serves disabled people of ALL identities, not just those that are the most privileged.
I have faced many barriers in my life even with the ADA in place, but at the same time, the ADA is a large part of why I’ve been able to succeed and fight against those barriers. Because of the ADA, I can continue the fight for equality and expand upon the work of those who came before me.”
“Although the United Nations Convention on the Rights of Persons with Disabilities (CRPD) adopted some disability rights covered under the ADA, the U.S., unfortunately, is one of few countries that has not yet ratified the convention. As a result, this may impact many Americans with disabilities who work, travel or study abroad. Lack of accessibility abroad limits the educational, professional and recreational opportunities of disabled people.”
Gusti Budiarta shares his full story about why the ADA is important to him:
“Happy 31st anniversary of the Americans with Disabilities Act!
For the past two years, I have been focusing on international disability rights, and I am proud of knowing the fact that ADA—the world’s first comprehensive civil rights law for people with disabilities—has inspired many countries across the globe to have an international disability treaty. The United Nations Convention on the Rights of Person with Disabilities (CRPD) came into force in 2006 and is the first international disability rights legislation. Although CRPD adopted some disability rights covered under the ADA, the U.S., unfortunately, is one of few countries that has not yet ratified the convention. As a result, this may impact many Americans with disabilities who work, travel or study abroad. Lack of accessibility abroad limits the educational, professional, and recreational opportunities of disabled people. Ratifying CRPD is a global commitment to recognize disability rights as universal rights, and to continue being a leader in the disability rights movement. In addition, ADA also benefits many migrants and refugees. As some areas in the U.S. are considered as sanctuary cities, there appears to be a need for more dissemination of ADA-related information among fellow refugees with disabilities.”
“Knowing I will obtain the accommodations I need to succeed in the workforce with the ADA, I feel like I can take on any job. With that said, the culture of an institution can always be a barrier.”
Jake Linn shares his full story about why the ADA is important to him:
“Knowing I will obtain the accommodations I need to succeed in the #workforce (ADA), I feel like I can take on any job. With that said, the culture of an institution can always be a barrier. In my lifetime, I hope more leaders will set an example to be more accepting for #PwD along with other marginalized groups. I’m so proud of my #disability and how far we’ve come with the #ADA, but I can’t wait for the day people will simply accept me for me. #Leaders take a stand!”
“While we are right to celebrate the 31st anniversary of the ADA as well as Disability Pride Month, we must also consider how we can strengthen and improve the ADA to better support our disabled brothers and sisters. So, lastly, the ADA also represents hope and opportunity for the change that is yet to come.”
Monica Mesecar shares her full story about why the ADA is important to her:
“To me, the Americans with Disabilities Act means recognition, and to some degree, liberation.
The passing of the Americans with Disabilities Act represents a major point in what can be considered the Disabilities Civil Rights Movement as detailed in the movie “Crip Camp”. Prior to the ADA, I feel like the disability community was largely ignored by society at large, given that there was very little legislation in place that sought to help us navigate an inaccessible world. Yet, with the passing of the ADA society was forced to recognize and include us. They could no longer pretend like we didn’t exist. Additionally, given that the ADA forced us to be included, it allowed us to more fully participate in society, freeing us from the constraints of inaccessibility. However, the ADA is far from perfect as much of our society still remains inaccessible to many. For this reason, while we are right to celebrate the 31st anniversary of the ADA as well as Disability Pride Month, we must also consider how we can strengthen and improve the ADA to better support our disabled brothers and sisters. So, lastly, the ADA also represents hope and opportunity for the change that is yet to come.”
* After submission, Monica noted that when she used the phrase ‘brothers and sisters’ it was not inclusive to all gender identities. She asked to include an apology for this oversight and commits to doing better to utilize more inclusive language in the future
“I never asked to be an advocate. I sort of just became one out of a need—of needing to advocate for my life and equal treatment. I didn’t want to be an advocate, I really just wanted to fit in.”
Rasheera Dopson shares her full advocacy story:
“My first encounter with advocacy happened by accident. If I am to be completely honest, I never asked to be an advocate. I sort of just became one out of a need—of needing to advocate for my life and equal treatment. I didn’t want to be an advocate, I really just wanted to fit in. I felt that standing up for myself made me different and as a disabled person I didn’t want to add onto the label I was already wearing. Nevertheless, I began to understand that advocacy was necessary and an important part of me coming to terms with my disability identity. I was 25 years old when I first said out loud to the world that I was a disabled black woman. That was five years ago and you know what it’s been a heck of a rollercoaster ever since.”
“When a child is diagnosed with a disability in their younger years, parents and teachers typically take the lead in advocacy through the education system. This is not always the most beneficial approach because as one grows up they become the best advocate for themselves.”
Danny Charney shares how disability policy has influenced his life:
“At the beginning of high school; I walked in as an unconfident and very stressed teenager, feeling like a burden on my peers. I was unsure if I’d be able to survive high school academically or socially. Throughout elementary and middle school I was tested for learning disabilities, given accommodations, and sat through countless Individualized Education Plan (IEP) meetings endlessly bored out of my mind. When I arrived to high school I started to learn and develop my own sense of advocacy, which according to the textbook definition is “an activity by an individual or group that aims to influence decisions within political, economic, and social institutions.” I joined GLSEN (Gay, Lesbian, Straight Education Network), student government, and took ownership of my own academic future. Instead of letting my teachers, administrators, and my parents decide my accommodations, goals, and how best to meet them, I wanted to take more of a decisive role and better understand the policy behind my IEP! I spent time throughout my four years in high school researching and learning the ins-and-outs of how legislation such as the Individuals with Disabilities Education Act (IDEA) was passed and what my rights were. This came to a culmination during my last few IEP meetings where I was empowered with the legislation and knowledge to be able to go into these meetings feeling confident and unafraid to demand what I needed to succeed. When a child is diagnosed with a disability in their younger years, parents and teachers typically take the lead in advocacy through the education system. This is not always the most beneficial approach because as one grows up they become the best advocate for themselves. Today, I am finishing my college career with a full understanding of how IDEA and similar legislation has empowered me to be my own advocate. At the end of college; I will walk out confident, educated, and unabashedly proud of my disability and knowledge on how I can best support myself.”
“I grew up knowing what IEPs and 504s meant, because I was always involved in decision making about how my school could best support my learning and growth.”
Naomi Hess shares how disability policy has influenced her life:
“I am a testament to the impact of the Individuals with Disabilities Education Act (IDEA). Due to the IDEA, I received a free and appropriate public education in schools that always welcomed me and accommodated my needs. I grew up knowing what IEPs and 504s meant, because I was always involved in decision-making about how my school could best support my learning and growth. Because I was able to flourish in the supportive environment of my public school, I am now a rising senior at Princeton University. I am fully aware that my high school and college success would not have been possible before the IDEA, when schools could exclude and discriminate against disabled students. This is just one example of how I’ve noticed public policy has impacted my life by directly creating more opportunities for success and inclusion.”
“I learned advocacy revolves around actively listening to marginalized communities that are often neglected and excluded from the conversation altogether.”
Jennifer Lee shares her full advocacy story:
“Truth be told, my advocacy journey originally began in Asian American activism, one that was rooted in my lifelong identity as a proud Korean American woman. However, everything changed in June 2020, the summer that I came face to face with the very prospect of what it meant to be disabled. Just over a year ago now, in the midst of the worldwide COVID-19 pandemic, I was diagnosed with Crohn’s disease, a form of Inflammatory Bowel Disease (IBD). Upon countless months of hospitalizations, surgeries, and treatments, learning about my new autoimmune condition shifted the very foundations of my life as I knew it.
Since then, advocacy has been perhaps the most powerful tool to come out of my chronic illness diagnosis. I find myself incredibly empowered by my fellow youth leaders in the IBD space, changing the game for chronic illness patients and proving that invisible diseases are equally valid in the conversation of disability justice. Today, I serve as a 2021 International Fellow with the Crohn’s and Colitis Young Adult Network, as well as a member of the National Council of College Leaders with the Crohn’s and Colitis Foundation. This summer, I’m proud to be an intern with the American Association of People with Disabilities, advocating for disability visibility in the Senate as a legislative intern; as the saying goes, nothing about us without us.
Moreover, as an undergraduate student at Princeton University, I learned that advocacy revolves around actively listening to marginalized communities that are often neglected and excluded from the conversation altogether. On campus, I’m so grateful to serve as the incoming president of Princeton University’s Disability Collective, a student-run disability support network, as well as a member of our Undergraduate Student Government’s Disability Task Force. Ultimately, my advocacy efforts are ingrained with the belief that the disability community deserves a seat at any table where decisions are being made — that their stories deserve to be amplified, such that their words not be fettered into any one corner. Every day, I speak up for the ones who are grappling with their own diagnoses, the ones who are fighting their own hidden battles, all in the hopes of lifting up the voices that are silenced and unheard. Especially as a woman of color, my goal is to champion intersectionality in any and all avenues of advocacy, proving that it is indeed possible to care about both disability and Asian American issues.
My advocacy journey is far from over; even 31 years after the passing of the historic Americans with Disabilities Act, there still exists an extraordinary amount of work left to be done. Nevertheless, I know that the fight will continue, with my fellow AAPD interns leading the way as the emerging advocates of the disability community. In fact, this is just the beginning.”
“The basic security of the ACA is a huge relief for many college students, but it’s not enough. We need to dream bigger.”
Courtney Felle shares how disability policy has influenced her life:
“Welcome to the ACA Generation! Since the passage of the Americans with Disabilities Act (ADA) in 1990, disability advocates have started talking about the ADA Generation: young people who grew up expecting the basic protections and rights of the ADA, who are now imagining what comes next.
But within this ADA Generation, there’s another group of disabled and chronically ill activists starting to graduate college and enter the professional adult world: the ACA Generation.
I was in fifth grade when the Affordable Care Act (ACA) was passed in 2010. I grew up relying on the protections of the ACA, unable to personally remember a time without it. I was on my mother’s health insurance plan, and I could expect to stay on it until I turned 26, after I graduated college and got settled in early adulthood. I could expect to find relatively affordable health insurance despite my “pre-existing condition.” I know not everyone my age had the same experience, especially those who grew up uninsured or with only unstable insurance. That’s still all too common an experience, even with the slight gains of the ACA (which technically started as a conservative proposal to defend private markets, regardless of patient needs).
But the ACA changed public discussion and expectations of health insurance access and cost.
Amidst legal attempts to overturn the ACA, I came across a quote online that has stuck with me: “Pre-existing conditions” only exist in the United States. The rest of the world just calls that medical history. And, increasingly, young people in the United States are taking for granted this same principle: care for everyone, for every need they may have. The basic security of the ACA is a huge relief for many college students, but it’s not enough. We need to dream bigger. I want to see universal, affordable (if not free) health insurance in my lifetime. For ourselves, and for all the generations that follow.”
“We shared thoughts. We created a plan. We listened. We were creative. We collaborated. Most importantly, we took action.”
Justin Tsang shares his full advocacy story:
“I first learned about advocacy during California’s Youth Organizing Summit back in 2017. Many of the participants in the summit were between 13-24 years of age, and we are all people with disabilities. When my small group discussed the barriers that affected us and others in the disability community, I learned what advocacy was for the first time. We shared thoughts. We created a plan. We listened. We were creative. We collaborated. Most importantly, we took action. When I went to college years later, I knew how important it was to advocate for my needs and those of my peers who also had disabilities. For example, myself and other students with disabilities helped advocate for a new elevator to replace the frequently broken one. Advocacy has been a large piece of my life, and it has helped shaped the way I work with others in the disability community and the general public.”
“I learned how to not just advocate for my needs, and the needs of my classmates, but also my community. Calling attention to things like bad transportation practices, a shortage of Counselors, and that they couldn’t keep excluding us just because we weren’t something sexy like sports or greek life.”
Elayne Otstot shares her full advocacy story:
“I would say that my actual experience with advocacy was while I was at UT Arlington, and it was really one of those situations where you learn by doing. I had just gotten all of my paperwork together to get accommodations for a learning disorder and was starting to get weekly emails from the Office for Students with Disabilities. They were looking for someone to serve on the President’s Roundtable, which was basically a student government version of something like the United Nations where policies and items were presented to the various student organizations, student government, by the university President and staff, then deliberated on once a month during a semester.
I had known about things like patient advocates etc thanks to what I was studying in my public health classes, but I didn’t know a whole lot about disability advocacy or even government or policy at the time and there just weren’t a lot of resources available to me in particular that I knew about. Eventually, I replied to the email and said I was interested in participating, figuring it would be a good public health experience if anything and I could do it for a semester and then do something else. It quickly became a crash course in advocacy 101 with late-night text messages back and forth with friends like Lydia. Asking how something works, or where I could get more information about something else.
The originally planned single semester quickly turned into my last two years at UT Arlington. During my time with the President’s Roundtable, I learned how to not just advocate for my needs, and the needs of my classmates, but also my community. Calling attention to things like bad transportation practices, a shortage of Counselors, and that they couldn’t keep excluding us just because we weren’t something sexy like sports or greek life or something that brought in the big donors like engineering and computer science.”
“I think we all advocate one way or another even though we may not realize it. It does not always require big action to make changes. Small steps can lead to great change.”
Cat Romero shares her full advocacy story:
“When it comes to the word “advocacy,” there are mixed reactions. Some think it is exhausting, while others make it their life’s work out of necessity. I think we all advocate one way or another even though we may not realize it. It does not always require big action to make changes. Small steps can lead to great change. My advocacy work began when a friend shared her personal story of being a deaf child in the foster care system in middle school. Naturally, I did not try to change the entire foster care system in middle school. However, just by listening and giving her the space to share her story, we were able to share her heavy emotional burden just for a few moments. This is when I realized listening can be as powerful as joining a protest. When we allow other people to share their stories, we are creating a welcoming space for them to feel validated and less alone. It also moved me into finding a career in social justice. I was introduced to a whole new injustice and realized there were many more experiences to be heard, injustices to uncover. Advocacy does not have to be hard. It is community work. It is a daily thing. We all are in this together. Our burden is too much for one person to handle alone. Let’s be accountable for each other’s burdens and create the future we desire.”
Being diagnosed as a teenager meant discovering my priorities as far as how I wanted to spend my energy. It also showed me the limited exposure people my age had when it came to disability. I don’t blame them though, because I would have not known either. An idea that my mom had while we were in the hospital was to order purple awareness bracelets that I could handout at school. Coincidentally, I was diagnosed at the end of April and May is Lupus AwarenessMonth. From the beginning, I didn’t shy away from being honest about how I was feeling or how I was affected by my diagnosis. Receiving a diagnosis within the time frame I did is uncommon with autoimmune disorders, as they can be hard to pinpoint due to the variety of symptoms. Acknowledging the privilege I had to receive medical care is important to me, because I know that others have gone years without answers and having their concerns dismissed. I have had seven years to become comfortable with speaking up for myself, and feel a responsibility to
support others to do the same. By encouraging people to take up space that they deserve, I’m hopeful that no other little kids will need to prove their conditions and that the world will be better equipped to give them what they need before they have to ask.”
“Anyone can be an advocate in many different forms and can ask themselves “what can I change about my community?” then work towards it.”
Sarit Cahana shares her full advocacy story:
“I first learned about advocacy out of necessity when I didn’t get the accommodations I needed in High School. Teachers treated my IEP (Individualized Education Plan) accommodations as optional. When I talked to my caseworker about it, he told me that I needed self-advocacy skills. This would have been really helpful, but he did not help me with those skills nor did he hold my teachers accountable. At the end of Junior year, I was encouraged to sign away my IEP and spent Senior Year with no protections.
That year, a teacher of mine had our class do an assignment answering, “What would you change about your community?” I slowly realized that I deserved better all these years in accessing my education. I started spending time in my inaccessible classrooms writing down all the ways I would make my school more accessible. I created a presentation for this class about this topic in front of my non-disabled peers and they really enjoyed hearing what I had to say. This brought me to continue advocating to the administration of the school and the district as well. From there, I haven’t stopped!
Advocacy has taken time, trial, and error. I ended up gaining strong self-advocacy skills and I still have trouble getting the accommodations I need. Advocacy can look like telling someone you need the captions turned on, to protesting, to meeting with your Senator. Anyone can be an advocate in many different forms and can ask themselves “what would you change about your community?” and work towards it.”
“Since elementary school, I learned to advocate for myself and for local organizations. At that same time, I became more aware of the many no’s directed toward me. For example, I could not be tested for gifted and talented education (GATE) because test questions were visual; I am totally blind. […] My taking and passing the test made me realize advocacy can and does bring about change if persistent enough.”
Karen Arcos shares her full advocacy story:
“Since elementary school, I learned to advocate for myself and for local organizations, including a nonprofit school called Blind Children’s Center (BCC). At that same time, I became more aware of the many no’s directed toward me. For example, I could not be tested for gifted and talented education (GATE) because test questions were visual; I am totally blind. As my mother sought out resources, I constantly heard her stating I was capable of taking the test. My taking and passing the test made me realize advocacy can and does bring about change if persistent enough. I share these experiences when advocating for BCC’s impact, including during one speaking engagement as a high school senior pictured here.”
View a video of Karen at the Blind Children’s Center: https://youtu.be/Eay5AdxwFrw
“Disabled voices need to be uplifted so society can be more inclusive overall.”
Kelly Moh shares her full advocacy story:
“I was fortunate to not have many issues with receiving the necessary accommodations I needed for my disability in elementary and middle school; however, once I entered high school I found that I needed to advocate more for myself. Some teachers neglected my accommodations, requiring me to learn how to speak up and express my needs. Although this experience was frustrating and exhausting at times, it has shown me the importance of advocacy for the rights of disabled people which often get overlooked. I am continuing to explore my identity as a disabled Asian woman and appreciate how my experiences so far have shaped my desire to work with other people with disabilities to further our visibility and access. Disabled voices need to be uplifted so society can be more inclusive overall.”
“Guardianship deprives people with disabilities of their rights as human beings. If we are to ensure the autonomy and independence of the disability community, then we must abolish guardianship on a national basis.”
Lou Paniccioli shares about disability policy he’d like to see changed:
“In order for there to be systemic change there must be a change in an existing policy or the creation of a new policy altogether. A policy that I want to see created is the abolishment of Guardianship otherwise known as conservatorship. Guardianship in a which a person if declared or perceived to be mentally incompetent by a court of law the individual in turn would be deprived of his or her rights including their rights to property and to vote. Guardianship deprives people with disabilities of their rights as human beings. If we are to ensure the autonomy and independence of the disability community then we must abolish guardianship on a national basis.”
“As a young Black girl with ADHD I was seen as a troublemaker, and often found myself in the principal’s office, even for things that weren’t necessarily my fault. […] I learned advocacy at a young age because otherwise I would have been written off as a menace, yet simultaneously denied the support that I needed since I was an academically strong student.”
Jaelyn Evans shares her full advocacy story:
“I’ve advocated in several different mediums throughout my life. My first experience with self advocacy was in elementary school. As a young Black girl with ADHD I was seen as a troublemaker, and often found myself in the principal’s office, even for things that weren’t necessarily my fault. Before calling my parents I was questioned thoroughly and had to defend myself. When we finally sat down for my accommodations meeting, both my mother and I had to advocate to receive the tools that I needed to succeed. I learned advocacy at a young age because otherwise I would have been written off as a menace, yet simultaneously denied the support that I needed since I was an academically strong student. This passion for advocacy has followed me throughout my life as I find myself advocating not only for myself, but for others whether it be on the Black Student Union or as Student Government President. In the future, I hope to pursue a career in policy work in order to fight for the rights of marginalized people.”
“I was born a Latina with an intellectual disability and have faced many challenges due to my race, gender, and disability. Even though I am very proud of these traits, the challenges associated with these traits have developed my passion to be an advocate.”
Fermina Lopez shares her full advocacy story:
“Advocacy has become a very important part of my life. I was born a Latina with an intellectual disability and have faced many challenges due to my race, gender, and disability. Even though I am very proud of these traits, the challenges associated with these traits have developed my passion to be an advocate. I have had to learn how to advocate for myself at a very young age. I come from a strong supportive family. My dad has always taught me how to speak up for myself, so I will be prepared when I face challenges alone. My real journey as an advocate started my senior year in high school when I was being denied financial assistance for college. At first, I was upset and hurt and almost gave up but then I started to think about all the self-advocacy lessons I learned in my life. I got myself together and started contacting all the right agencies to help me advocate for college. I won my battle and I knew then that I did not want what happened to me to happen to other people with disabilities so I started helping other students with disabilities to connect with programs that would help them apply to college and provide financial support.
Having the opportunity to be an intern with the AAPD has been a great opportunity and has strengthened my passion for helping people with disabilities. AAPD has given me new ideas on how to be a more professional advocate. The program has also taught me about current issues that have a negative impact on the disability community and what I can do as an advocate to make changes to these negative barriers.”
“By encouraging people to take up space that they deserve, I’m hopeful that no other little kids will need to prove their conditions and that the world will be better equipped to give them what they need before they have to ask.”
Kristin Kumagawa shares her full advocacy story:
“I was first exposed to advocacy when I found myself needing to explain my condition to classmates and teachers in middle school. I was diagnosed with lupus in the middle of seventh grade, where I missed two weeks of school. Although It was a short period of time, my life felt flipped upside down as I was learning to navigate my new normal. I returned to school slathered in sunscreen and wearing various hats, as I am photosensitive and was on the tail end of a flare-up which emphasized my symptoms. My teachers were notified of why I was absent and the new accommodations that were recommended by my doctor in the form of a 504 Plan.
However, that didn’t stop people from questioning why I was allowed to break dress code by wearing a hat or having a computer to take my notes. One instance that frustrates me to this day is when I was stopped by a parent aide who monitored recesses. I was walking through the hallway during lunch when I heard someone calling out for me to come over. She then proceeded to berate me for wearing a hat when I wasn’t supposed to. Having just come back to school from the hospital, I had a paper copy of my 504, whichI pulled out for her to see. Despite my insisting that I was allowed to wear a hat because of my medical condition and having physical proof, she wouldn’t believe me because I didn’t look sick. I ended up crying out of frustration, and she finally left me alone with a warning. While it was a horrible experience, it gave me insight as to how I would need to navigate the world as someone with an “invisible” disorder. I became more determined to understand my rights because I didn’t like the feeling of not knowing what to say when questioned.”
“My 504 plan had a provision which formally asked my teachers to give me printouts of the information that was written on the board and it worked. I had the information literally at my fingertips. I could study independently just because of a single section from a piece of legislation that was written nearly 50 years ago.”
Jonas Bryson shares how disability policy has influenced his life:
“I was born with a visual impairment. I remember when I was younger, I’d sit closer to the TV and would get frustrated when I was asked to watch movies and TV shows from the couch because I would always miss out on the little details that I literally could not make out from that distance. But I didn’t know any other reality, so I just kept it to myself. Fast forward a few years and as I was diagnosed with my visual impairment and started to understand more about myself, it all started to make sense. I learned how to better advocate for my needs as a person with a disability.
So, when I went to school, I benefited from a 504 Plan. This is a federal program which seeks to help kids with disabilities in a general classroom environment. I had several accommodations, one of them involving the white board. Because of my vision, I wouldn’t be able to see it from across the room, sometimes even if I sat near the front of the class, just like watching movies from the couch except now my grades were at stake. For this reason, my 504 Plan had a provision which formally asked my teachers to give me printouts of the info that was written up on the board and it worked. I could now follow along like everyone else instead of having to guess what the teacher wrote or ask for clarification every two seconds or rely on a friend’s notes after class every day just because of a disability that I was born with. I had the information literally at my fingertips. I could independently study because of a single section from a piece of legislation that was written nearly 50 years ago. This was just one policy, but it helped so much.
From then on, I worked harder than I ever did because I didn’t feel as behind as I used to, I didn’t feel as lost. This sense of control led me to really appreciate the power of education and, in a broader sense, equity. To this day, I’m grateful to the Section 504 program for giving me the opportunity to succeed. I graduated from college last semester and I hope that I can serve as an advocate for others in the future because I know that even though these policies are on the books, they are often not properly funded or enforced, especially in marginalized communities. Every child deserves a fair shot and policies like Section 504 are there to help make this ideal a reality.”
“I advocated for myself to get accommodations so that I would no longer let being slow and distractible affect my ability to succeed and demonstrate my skills and abilities accurately in terms of grades.”
Deanna Yadollahi shares their advocacy story:
“When I was a junior in high school, I self-identified with a mental illness we were learning about in psychology class. It made sense why I had difficulty in and out of the classroom settings, that led to being misunderstood by my peers and teachers, even my family. Why was I always late to school, between classes, why was I slower? It all made sense. I advocated for myself to get accommodations so that I would no longer let being slow and distractible affect my ability to succeed and demonstrate my skills and abilities accurately in terms of grades. I always got decent grades, but they weren’t reflective of my true potential because I wasn’t making the time crunch. And so, I led my school team meetings and accommodations. That wasn’t the first time I learned about advocacy, but it was the most memorable time I got to practice it for myself.”
“As the first in my family to attain a higher education, I know I can either use my education to insulate myself from the problems of the world or become a force to address them. I wholeheartedly choose the latter; advocacy is the perfect channel to accomplish that.”
Pearl Zhang shares her story of when she first learned about advocacy:
“My story of advocacy began in my first year of college, when I took a class called Environmental Justice, where I learned about concepts such as greenwashing, environmental racism, and food deserts. This class exposed me to instances of inequity, injustice, and inequality which disproportionately affect members of the most marginalized communities. As part of the capstone project for the course, I interviewed residents of Chester, PA, where I learned about their first hand experiences living under hazardous air pollution. A majority of residents spoke about their asthma, which exposed me to the interconnections between disability justice and environmental justice. As the first in my family to attain a higher education, I know I can either use my education to insulate myself from the problems of the world or become a force to address them. I wholeheartedly choose the latter; advocacy is the perfect channel to accomplish that.”