Photo of Rachel Litchman

In January 2025, just two weeks before President Trump’s second inauguration, I was approved by the state of Wisconsin to receive Home and Community-Based Services (HCBS), a form of long-term care that they called IRIS.  A rapid decline in my progressive disability caused me to go into a rehabilitation hospital, and I exited it in August 2024 as a full time wheelchair user. I now needed help with basic personal and home care tasks – bathing, cooking, cleaning, and dragging myself and my forty-pound wheelchair up the twenty steps of my inaccessible apartment’s stairs.

Despite my home care services being approved to begin in January, it still took almost a month before I could find personal care attendants (PCAs). I posted in local Facebook groups, and I asked other disabled people for advice. Yet, I couldn’t find anyone who was able to help. The wages provided by the state were too low – at a maximum of $17/hour. Right now, a single person needs to earn at least $21 per hour to support themselves in Wisconsin, while someone with a family needs to earn much more.  I didn’t have anyone in my personal network who could take on this job. Most of my friends were also disabled, or they had full-time employment. When I finally decided to select a care agency to hire workers for me, I thought it would solve my troubles finding support staff. But for almost a month, the agency had such a hard time finding PCAs for me that the agency CEO had to step in and provide caregiving support for me.  

Unfortunately, challenges in finding qualified care attendants are the norm. Even before Trump took office, there has long been a severe worker shortage in the home care industry. In my state of Wisconsin, 1 in 4 direct care worker positions are vacant, and nationally, all states surveyed reported a shortage of direct care workers, in some cases leading to care agency closures due to a lack of staff.

Medicaid cuts and immigration raids only make these already pressing issues worse. Thirty-two percent of the home care workforce is staffed by immigrants, and immigrants make up twenty-one percent of staff in nursing homes. Additionally, that percentage has increased over time, as low wages and poor treatment make care work a generally unappealing job. Non-immigrants, who may have more resources to find jobs with better pay, often don’t want to take these roles. Further, there is enormous turnover amongst care workers because they can often get better, more secure jobs in other fields. One recent estimate found that turnover in the home care workforce was close to 75 percent in 2024. 

All care attendants deserve better pay and treatment, and care attendants who are immigrants deserve to not feel threatened in the workplace due to increased anti- immigrant enforcement activity. Unfortunately, Trump’s immigration policies, which include visa suspensions for immigrants of color – including Haitians, Somalis, and Afghans – have already affected the long-term care workforce. Immigrants are leaving or disappearing from healthcare jobs and facilities are struggling to find people to hire.

Immigrants, especially non-citizens, have feared showing up to work, knowing they may be targeted for deportation. Even when immigrants have visas or have obtained citizenship, this has proven to not matter to ICE, who has illegally detained citizens and visa-holders, incentivized by quotas that place a bounty over people’s heads. This leaves disabled people without home care, nursing facilities without staff, and care workers and the disabled people who rely on them more susceptible to danger and death. 

Immigrants and their families need care too. For disabled immigrants, including those who may be racially profiled regardless of citizenship status, they risk losing access to life-saving care if they are detained and/or deported. Immigrants may also fear leaving their homes or going to the hospital for healthcare, as nursing home staff fear raids from the federal government, and hospitals have already seen ICE agents walk through their doors. Disabled people in ICE detention centers face even more critical threats to their lives, as detainees have reported being denied access to medical care. Finally, for disabled immigrants who rely on personal care attendants, even if their citizenship status may not make them eligible for Medicaid or HCBS, they face the double threat of having their attendants disappeared and detained by the government, and care needs denied if subject to ICE detention.

The broader attack on immigrants combined with Medicaid cuts that are already beginning as a result of HR 1 mean that home and community-based services face a dire threat. Since HCBS is an optional program, it will likely be one of the first programs that states cut when Medicaid dollars decline. Even before Medicaid cuts began, when states faced budget cuts, HCBS was often the first program cut. We recently saw this in both Maryland and New York. Further, when federal Medicaid cuts occurred in 2010, all states made cuts to HCBS, meaning reduced caregiving hours, longer wait lists, and less capacity to take new enrollees.

For people like me who rely on caregivers to remain in the community, assaults on immigrants mean I move closer and closer to institutionalization each day. I am not naïve to the abuses that occur in institutional facilities. I fear what will happen to myself and other disabled people, citizens and immigrants alike, when we are forced out of sight, out of mind.

Rachel Litchman is a cartoonist, writer, and consultant who primarily covers disability, healthcare, and housing policy. She has comics and writing published in The Washington Post, The Nib, The Disability Debrief, and STAT, to name a few places. You can find her on her website racheldl.com or on Instagram as @racheldlart.

The post Recent Changes to Immigration Policies Have Disastrous Impacts on Disabled People and Long-Term Care appeared first on AAPD.

Photo by Neha Balachandran

As an Autistic, multi-disabled person, working in the theater industry can be challenging. It’s not often you see disabled representation in theater, both onstage and off. Growing up, I rarely saw other disabled performers or characters. When I started working in theater, I was often the one person in the room bringing up accessibility. Theater has always felt like both a safe space and an industry with many barriers. However, I have made my way into it with the intention of changing it, as Elphaba and Glinda would say, for good.

How does one change an industry? Well, they usually don’t, at least not alone. It is our actions as community members that help us to shake things up.

When I began my journey in theater, I knew I needed to start somewhere that allowed me to work with other creatives. So I became a Teaching Artist. Teaching Artists are small but powerful catalysts for change. That’s the belief that pulled me into the industry back when I didn’t think I could have a place in it. As a disabled teen, my teachers made a large impact on me and I felt an unshakable desire to have that same impact on others one day. When I was a Teaching Artist, change happened in the moments that nobody else would notice. I would notice a child’s access needs, help them navigate challenges, and help them be confidently creative. The moments I spent empowering the youngest creatives in my community with other educators meant the world to me. 

However, I soon discovered that I could have a greater impact than I did as an arts educator by working at an arts education nonprofit instead. I was given the opportunity to intern at Philadelphia Young Playwrights (PYP). There, I did work centered on their education programs and community engagement efforts. The programs I assisted with gave youth free access to theater education that aimed to help them tell their stories. I know how impactful PYP was because I was also a selected playwright for their New Voices Festival for a play I wrote on the Autistic experience and what it is like to be Autistic in theater. 

My desire for a more accessible theater industry led me to apply for a Social Media Manager job with the Autistic Theatremakers Alliance (ATA). I have been with ATA for a year now, engaging in collaborative activism on a national scale. Recently, we opened up grant applications for Autistic theatre artists to fund their theatrical goals.  Our grants help artists fund projects and access education opportunities. Projects like these bring me joy because I could never empower other Autistic creatives on my own in this way.

While I love having an impact on a larger scale as I do with ATA, some of the work I’m proudest of has been the small projects I’ve done at a local level. As an AAPD Intern in Summer 2025, I made a list of accessibility improvement suggestions for my placement site, Washington Performing Arts. I cannot make an organization’s programs more accessible by myself, but I can help them figure out the tools they need to do so. 

My career so far shows this commitment to community. I was recently nominated to be a part of the Kilroys Web – a web of changemakers in the theater industry. It is a web because we don’t create change by ourselves. Through our work, advocacy, and community contributions, we become a part of a long history of small actions that lead to significant changes over time. With PYP, my mentor and I kickstarted an initiative to provide students with access to local theater through ticket donations. As a Student Blogger for Broadway World, I get to offer a unique glimpse into what it is like to build a career in theater as a disabled person. Since I have broken into this industry, I want to work with others to make it more inclusive for others and encourage understanding. Even at the earliest stages of your career, you can help open doors for others by working with others in the spaces you occupy.

All of my experiences working in theater opened my eyes to the importance of making the industry more accessible to young and underrepresented voices. Works that capture the disabled experience make space for awareness, understanding, and acceptance. They can also help people feel seen. The casting of Marissa Bode to play Nessarose in Wicked did that for a lot of disabled people, providing authentic representation for a character always previously played by nondisabled actresses. At the time I wrote my play, I had only seen one show before with Autistic representation – How to Dance in Ohio.  For me, disability representation in theater proves we belong in this industry and deserve to be represented accurately. It also fuels my work to advocate for greater access and inclusion. 

The theater industry has a long way to go before it is disability-inclusive. However, everyday creatives and activists shaking things up in their communities give me hope it can be. It is a web because we don’t create change by ourselves. Through our work, advocacy, and community contributions, we become a part of a long history of small actions that lead to significant changes over time. I’ve been seeing more representation on stage, behind the scenes, and in the business side of theater. These beautiful voices are the future of American theater and it would be tragic if we did not continue to amplify them. It takes a wave of people to make a difference, so what role will you play?

Brianna Arce (she/her) is a Latina, multi-disabled arts professional, writer, and creative based in Philadelphia, PA. She presently works with the Autistic Theatremakers Alliance (Social Media Manager), Tech Owl (Assistive Technology Champion), and Broadway World (Student Blogger).  She was also an AAPD 2025 Summer Intern who worked with Washington Performing Arts.

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This year, AAPD marked 30 years of advancing disability rights and leadership under a theme that feels more urgent than ever: Powered by Community.

Our founders, Paul G. Hearne and John Kemp, imagined AAPD decades ago as an organization where disabled people could come together to shape policy, build power, and foster community. Thirty years later, that vision continues to guide us.

In 2025, the disability community faced extraordinary challenges. We saw renewed threats to services disabled people rely on for our safety, dignity, and survival. Inclusive education, accessible employment, affordable housing, and health care were all under attack. Through it all, AAPD not only worked to mitigate these threats, but we also brought partners together to coordinate across community priorities, supported the development of disability organizing infrastructure, and lift up advocates engaged in the fight for disability rights.

I am deeply proud of what our team and our community accomplished together this year. Here are some of my highlights from AAPD’s work in 2025:

How We Shaped Disability Policy

AAPD’s policy work is rooted in the principle of nothing about us without us, ensuring that disabled people are at the center of decisions that affect our lives. In 2025, we helped to organize rallies and vigils in response to proposed Medicaid cuts and helped demonstrate that disability policy is a bipartisan issue. During our Disability Power on the Hill event in September, AAPD supported nearly 120 disabled advocates from 33 states by covering travel and lodging so they could participate fully. Together, advocates held meetings with 126 members of Congress in both Republican and Democratic offices. The advocates focused on gaining more support for the SSI Savings Penalty Elimination Act and Transformation to Competitive Integrated Employment Act, preserving the Individuals with Disabilities Education Act, and securing appropriations funding for programs disabled people rely on.

Not only did Hill Day lead to critical members of Congress signing onto the target bills, but it also formed a community of disability advocates who keep in touch to this day. This experience was meaningful for many participants because it was their first time ever advocating in-person in Washington, D.C and being in the halls of Congress. Disabled people belong everywhere decisions are being made, and Disability Power on the Hill serves as one example of how AAPD creates leadership experiences for disabled people that directly lead to real policy impact.

2025 was a year of often rapid and unpredictable policy changes that created confusion and fear, especially for disabled people and our families. In order to shape policy, people have to be able to understand it. To meet the needs of our community, AAPD expanded the ways in which we communicate about policy. We published a series of explainers to ensure disabled people and our allies can keep track of what is moving, changing, and unfolding on Capitol Hill and across the federal government and further understand how these changes impact the disability community. Related to this goal of increased understandability of our materials, we have started and will continue to incorporate more plain language into our materials to make our work more accessible.

AAPD also heavily supported on-the-ground organizing by disabled leaders working in their own communities. Through our REV UP disability voting campaign, we distributed close to $250,000 in grants to organizers in 23 states to strengthen disability voter engagement. These grants supported conducting polling place accessibility audits, providing accessible voting information and outreach in American Sign Language, engaging in nonpartisan ballot education, and more. State REV UP coalitions planned a variety of activities to shape a more accessible democracy. To name a few highlights, REV UP Virginia hosted a statewide candidate forum on disability and REV UP Texas registered and engaged nearly 700 voters, reaching disabled voters on college campuses, community events, and nursing homes. In 2025, REV UP also focused on making sure all voters could access our materials. During Disability Voting Rights Week, REV UP provided resources in eight languages, including American Sign Language. Nationally, REV UP reached almost 30,000 voters by helping them register to vote, request an absentee ballot, update their address, or obtain nonpartisan voter education.

Beyond our REV UP grant programs, we also provided grants to support the disability community in moments of urgent need. In response to the federal government shutdown, the Fannie Lou Hamer Leadership Program launched a Rapid Response Hunger Relief microgrant initiative. These grants supported 33 food distribution events and 10 education sessions across 14 states, reaching more than 2,100 individuals and families through meal programs, mutual aid, SNAP navigation, and transportation support.

We also continued to expand our Information and Referral (I&R) services, providing individualized support to disabled people seeking accessible housing, equitable education, career and internship opportunities, and many other supportive resources. Since January, we have responded to close to 5,000 emails and phone calls from people seeking direct support related to — everything from accessible, affordable housing to legal representation and more. Although AAPD is not a direct service organization, getting connected to the right local resource can be a daunting task in and of itself. If this year has taught us anything, it is that our state and local disability community infrastructure is more important than ever.

How We Built Disability Power and Community

Community building is not separate from policy work; it is how lasting change happens. Power and community building happens across all of AAPD’s work. Whether it is through creating opportunities to increase disabled people’s economic power or cultivating disabled leaders across the country, AAPD used our advocacy and our programmatic work to build disabled people’s power in 2025.

As we have done for more than two decades, we continued to invest in programs that develop disabled leaders and strengthen economic opportunity. This year, we released a comprehensive evaluation of the first 20 years of our Summer Internship Program. The findings were powerful and significant. Internship alumni experience economic mobility that outpaces national norms. Evaluations from our most recent internship cohorts demonstrate the benefits interns experience as a result of participating in the program. 100 percent of 2025 summer and fall interns reported that the program was valuable for their career development and that they felt a strong sense of belonging within the disability community. Demand for our internship program has never been higher, and we hope the information and lessons contained within the internship evaluation report can be applied to other programs seeking to improve career, leadership, and community development experiences for youth with disabilities.

We also strengthened our commitment to emerging leaders by increasing the Paul G. Hearne Emerging Leaders Award from $10,000 to $25,000 per recipient, enabling awardees to turn bold ideas into lasting change. While this increase in award is significant, it pales in comparison to the movement contributions of these leaders. For example, Sneha Dave, a Hearne Awardee from 2020, facilitated 6 roundtables on young adults with chronic medical conditions on clinical trials and young adults this year, creating an opportunity for disabled voices and experiences to be shared in spaces that often explicitly exclude us. Of course, I cannot think about the lasting movement contributions of Hearne Awardees without mentioning Alice Wong, who we lost this year. Alice’s Disability Visibility Project was supported by AAPD’s Hearne Award in 2016 and grew into an essential platform for creating, sharing, and amplifying disability media and culture. Her work made and continues to make complex disabled experiences visible to the world. This year we commemorated the 25th anniversary of the Hearne Awards by convening former Hearne Awardees from 2000 all the way to 2025.

This year, AAPD also launched the Access Coalition: Creating More Inclusive Retail Spaces. Through this coalition, AAPD joined with partners like Walmart, Sam’s Club, Starbucks, Step ‘n Wash, Locknet, Inclusive Web, and CVS to create retail accessibility frameworks that integrate  human-centered design and constant feedback from people with lived experience.

This work has underscored that small changes — whether in signage, fixtures, or layouts — can make a meaningful difference in the ability of disabled people to experience greater dignity within our larger communities.

Our work to promote greater accessibility and dignity for disabled people was not limited to physical retail spaces. AAPD also engaged in work to ensure that people with disabilities are centered in the creation, deployment, governance and auditing of technologies that we rely on. One example of this work is the Anthem award- winning report we authored with the Center for Democracy and Technology titled Building A Disability-Inclusive AI Ecosystem: A Cross-Disability, Cross-Systems Analysis Of Best Practices. The report provides recommendations for assuring that disabled people can enjoy the benefits of AI and algorithmic technologies while being safeguarded from the risks.

Across AAPD’s work, one lesson is clear: when disabled people lead initiatives on issues that directly impact our lives, the results are powerful. From visionary leadership supported by the Paul G. Hearne Emerging Leaders Award to grassroots organizing through REV UP, disabled-led solutions are what move our movement forward and ensure that disabled people can thrive.

The work I’ve described above is only a snippet of what AAPD’s dedicated team and our partners accomplished in 2025. Reflecting on the year as a whole, one of the moments I’ve continued to return to was traveling with the REV UP team to Alabama, for the 60th anniversary  Selma Jubilee and the Edmund Pettus Bridge crossing commemorating Bloody Sunday. Bloody Sunday was a pivotal moment in the fight for voting rights and the passage of the Voting Rights Act of 1965. Every year since, advocates return to cross the bridge alongside the original demonstrators, called foot soldiers. During this year’s march, AAPD supported disabled marchers by providing wheelchairs, sighted guides, and transportation assistance, and we organized a group of 25 disabled advocates to cross the bridge together alongside original foot soldiers. By now, the foot soldiers have aged into disability, and many used the wheelchairs we provided to cross. The consistent presence of these foot soldiers over the past 60 years, witnessing the many shifts in civil rights over that time, reminds me of the Martin Luther King Jr. quote, “The arc of the moral universe is long, but it bends towards justice.” It also reminds me that no matter how policy changes, no matter what economic opportunity exists, community will sustain us.

How You Can Be Part of Our Community

AAPD’s work is powered by community.

Whether you joined us on Capitol Hill, organized locally through REV UP, participated in a leadership program, or supported our work from your home, you are part of this movement. Your engagement and generosity sustain the programs and policy advocacy that help us expand opportunity and advance disability rights.

As we look to 2026, our priorities include strengthening disability voter education ahead of the midterm elections, expanding plain language access, and continuing to build political and economic power across the disability community. We will adapt to changing times to take on emerging disability issues from AI to autonomous vehicles. We will also continue investing in people with disabilities through our internships, scholarships, and awards programs.

Our policy advocacy and power building programs require support from our community. If you are able, I invite you to make a contribution today to support our important work. You can donate by visiting aapd.com/give, where your gift helps ensure that AAPD can continue to show up, build together, and grow our impact in the year ahead.

There are many opportunities to get involved with AAPD’s work beyond donating. You can sign up for AAPD’s email list, follow us on social media, sign up to be a DMD mentor, get engaged with REV UP, and more.

AAPD’s progress belongs to all of us. Thank you for everything you have contributed, including your time, your voice, your partnership, and your belief in what we can build together in 2026 and beyond.

The post Powered by Community: How AAPD Showed Up, Built Together, and Looks Ahead appeared first on AAPD.

So it is better to speak
remembering
we were never meant to survive.”
– Audre Lorde, A Litany for Survival

Flat affect. Disorganized thinking. Brain fog. Fast-moving shadows, critiquing whispers, inescapable paranoia. Schizoaffective disorder.

I am a high-achieving Black woman, and I grew up as a high-achieving Black girl. I was your Student Council president, your community leader, your fellowship recipient, your Truman finalist. I applied for everything, was awarded most things, and I was often the youngest in the room.

I represented my community with grace. I did not slip up, I did not show weariness, I put on a brave face. I knew my place. I was often the first of many. I checked every box, and I was your token. But what happens when the boxes we are placed into no longer fit us? What happens when the token stops shining for you? You loved me until I stopped making sense to you. And believe me, I’ve stopped making sense to many.

I live with schizoaffective disorder. Schizoaffective disorder is the combination of schizophrenia and a mood disorder, such as depression or bipolar disorder. Since my early adolescence, I have struggled with depressive and psychotic symptoms that often felt too big for my body, and I’ve been in and out of psychiatric institutions, therapy programs, and on and off various psych medications since age 14.

To be a high-achieving Black woman with schizoaffective disorder is to be released from the psychiatric hospital, return to work the next day, and be questioned by supervisors for my flat affect. It is to be tone-policed, to try to fit into boxes that will never bend for me. It is to be invalidated during crisis, yet doubted for dreaming. To live on the brink between wellness and illness is a cage that I have never been able to free myself from. To know that I am deeply capable of creating a meaningful life for myself, but never truly knowing if one psychotic episode can make the life I am trying to create suddenly disappear, sometimes feels like too big a burden to bear. 

You would never know that this is who I am or what I live with. So when I hear you on the news, you think you’re not talking about me because I, of course, am your token, right?

In September, Fox News host Brian Kilmeade boldly stated on national television that unhoused people with mental illness should simply be executed. “Just kill them,” he said, in response to a conversation about social support, housing, and how (or if) to meet the needs of unhoused people who refuse to accept such services. Kilmeade has since publicly apologized, but the harsh implications of his words have been echoed decades before and continue to be broadcast throughout our media and society. If you cannot get in line, you must be eliminated. I have spent my entire life trying to get in line for my own protection. I have tried to be a societal token, but I no longer want my legacy to be one of obedience. Audre Lorde told us that our silence would not protect us. So when this country routinely chooses to discard people like me, the shield of compliance becomes suffocating because it not only fails to shelter, but it erases who I am in the process.

My token is done shining for you. I have been a high-achieving Black woman, a token you could point to as proof of progress. But I will not be the token for you anymore – I no longer want to allow my worth to be defined by those who will never truly understand me or my community.

I am learning to live without the weight of your gaze, and when the token stops shining, I will finally be free to glow for myself. But here’s the truth: it’s not enough for me to be free. If we are to truly change, we must shatter the systems that demean people like me and countless others. Kilmeade’s statements were not a slip of the tongue. They were a reflection of the deep-rooted and systemic violence we endure. 

Kilmeade was talking about the marginalized people who are rendered invisible, whose humanity is erased, and whose lives are deemed disposable because they cannot get in line. 

This is not just about me; we are all intertwined in the fight for justice, and this fight must be collective. Push against the complacency that allows these dehumanizing narratives to flourish. We were never protected, anyway. 

My token is done shining for them – is yours?

This blog was written by an alumni of the Internship Program who requested anonymity.

The post My Token is Done Shining for You appeared first on AAPD.

Portrait of Angeth Mayen

May 24, 2024, is a date I will never forget. Before last year, I didn’t fully understand the struggles faced by people with disabilities. I knew disability existed, but it felt distant from my everyday life. That changed overnight when I was diagnosed with Type 1 Diabetes. Suddenly, I had to confront inequities in the healthcare system, the lack of public understanding of disabilities, and how having an invisible disability can change the way you navigate the world.

I had some resources when I was diagnosed that others do not have. I have an older brother who also lives with Type 1 Diabetes, so I had someone to guide me through the toughest early months. However, when I transitioned from high school to college, I found myself navigating a system that I barely understood. For the first time, I was a disabled student, and I didn’t even know what accommodations were. I still saw myself as the same person I always was, but my body and my needs had changed significantly. I could no longer sit through a two-hour exam without monitoring my blood sugar. I needed snacks readily available. I needed breaks. I needed professors and administrators who understood.

It took me almost two months to understand what my university’s Student Disability Services office actually did. Once I connected with them, I was supported, respected, and given every accommodation I needed. That experience was validating, but some students with disabilities across the country do not have such a positive experience. It reminded me that the right to learn, participate, and succeed should not depend on luck or whether you happen to know the right resources.

Disabled students’ rights to education exist because of the Individuals with Disabilities Education Act (IDEA). IDEA is a law that guarantees students with disabilities a free, appropriate public education tailored to their specific needs. It was enacted in 1975 as the Education for All Handicapped Children Act. Before that, disabled students were often institutionalized, excluded, or denied access to education altogether. I grew up in a world where IDEA already existed, so I took it for granted. Many of us do. However, as IDEA turns 50 years old, it’s clear that merely having this law is insufficient. States are expected to follow IDEA, but their actions tell a different story.

On June 20, 2025, the U.S. Department of Education issued the annual determination letters regarding state implementation of IDEA. Each state receives a rating based on its performance in implementing IDEA, as assessed through its State Performance Plan. States fall into one of four categories: meets requirements, needs assistance (one year), needs assistance (two or more consecutive years), or needs intervention.

These ratings are important because they clearly demonstrate whether states are meeting their legal responsibilities to students with disabilities, and the 2025 figures are concerning. 

This year, ratings improved in only three states, while dropping in five states. Over the 12 years from 2014 to 2025, only six states consistently earned a “Meets Requirements” rating each year. Every other state in the country has failed to meet IDEA requirements at least once in the past decade. This means that less than half of school-age students with disabilities live in states that meet the IDEA requirements. That fact alone should be concerning. But the deeper issue is structural. It’s not that states have suddenly worsened; the system used to evaluate them has worsened. 

Starting in 2014, the Department of Education introduced the Results Driven Accountability (RDA) system. RDA aimed to shift focus from paperwork to real student outcomes. On the surface, that seems helpful. However, in practice, it created a scoring system that ranked states against one another.

Even if all states improve at the same rate, some would still end up in the lowest categories. This creates a system where it’s nearly impossible for every state to earn a “Meets Requirements” rating, regardless of their overall improvements. All states could be doing well, yet the scoring would still classify them as winners and losers. The RDA system depends too much on ranking and too little on properly assessing students with disabilities through long-term goals and accurate performance measures. This makes it hard to identify which states are genuinely succeeding and which are falling behind, leading to difficulties in determining which states need more intervention from the federal government.

However, it’s challenging to focus on fixing the inner workings of a system that is being dismantled at the helm. The Department of Education faces budget cuts and significant staff reductions, including those responsible for enforcing IDEA. When oversight diminishes, accountability decreases too. And when accountability weakens, students like me who rely on IDEA protections are the ones most impacted.

The recent government shutdown highlighted the Trump administration’s and the Department of Education’s stance on disability rights and federal oversight. The administration used the shutdown to argue that the Department of Education is merely a channel for distributing funds to the states, and they claimed that states can manage the money independently. However, this view overlooks the department’s true importance. Currently, there are proposals to move the Office for Civil Rights (OCR) and the Office of Special Education and Rehabilitative Services (OSERS) into agencies like the Departments of Justice and Labor, which lack the expertise and institutional knowledge needed to protect the rights of students with disabilities. During the shutdown, OCR cases went unresolved, and districts were unable to access important information.

Additionally, recent office closures and staff reductions have already led to thousands of dismissed cases and fewer investigations, leaving students without meaningful protections for their rights. IDEA, OCR, and OSERS are not optional programs, funds, or administrative chores; they are lifelines. They are the reason students with disabilities have a chance at equal education, and weakening them jeopardizes all of that.

If we want the next 50 years to be different from the last for disabled students, we must speak out. We need to advocate for federal investment in special education, stronger oversight, and reforms that guarantee fair and meaningful accountability. Students with disabilities deserve more than just the bare minimum. They deserve schools and states that consistently and fully meet their obligations.

IDEA transformed everything. Now we have to fight to keep it alive.

Angeth Mayen is a second year at the University of Chicago studying political science with a focus on law, public policy, and disability rights. She serves in multiple campus leadership roles and is currently a Policy Fellow with the American Association of People with Disabilities, where she researches federal programs like SSI and SNAP. She hopes to pursue a career in public interest law and policy centered on access, equity, and community impact.

The post IDEA at 50: Why Disability Rights in Education Cannot Be Taken for Granted appeared first on AAPD.

Photo of Dr. Jackee Jackson

This Election Day, local elections across the country will shape the policies and choose the leaders that influence our daily lives. In addition to hundreds of local elections, New Jersey and Virginia will vote on statewide offices, like Governor and Lieutenant Governor, and state legislators.

As millions of disabled voters head to the polls today, we asked Dr. Jackee Jackson, a leader from REV UP New Jersey, to share her journey as a voter and why building the power of the disability vote matters.

When I turned 19 years old, I had an opportunity to cast my first vote in my local township. Being a first-time voter was a huge milestone for me because it symbolized adulthood and civic responsibility as a United States citizen. It gave me a sense of pride and feeling of empowerment. It was a liberating experience knowing that my vote has power and that my vote is my voice. 

Reflecting back on my ancestors who “fought, bled, cried and died” for the right to vote motivated me to become actively engaged in the election process for the rest of my life. I sincerely honor the brave men and women who sacrificed their lives for African Americans and other minorities to vote.

I am grateful for the 15th and 19th Amendments to the U.S. Constitution which granted African American men and women the right to vote. I am also grateful for the Voting Rights Act of 1965, the Civil Rights Movement, and Affirmative Action for securing voting rights and other opportunities for African Americans.

Voting is a fundamental right for all citizens, yet people with disabilities continue to struggle to vote. Over the years, I have served as a poll worker and I learned that many polling sites were not accessible or accommodating to people with disabilities. 

Sadly, even though July 26, 2025 marked the 35th Anniversary of the Americans with Disabilities Act (ADA), not all polling places are accessible. Architectural barriers, including a lack of accessible parking spaces, curb cuts, or automatic doors, can make it difficult for voters with disabilities to vote in person and even keep them from accessing the ballot entirely.

This inspired me to advocate for accessible polling sites to ensure that people with disabilities can register and cast their votes. I realized that one way for me to do this was to join REV UP, which stands for “Register, Educate, Vote, Use Your Power”. 

As a strong disability advocate in New Jersey, I am part of the REV UP Voting campaign with the Alliance Center for Independence (ACI). REV UP is composed of state and national coalitions, as well as other disability organizations. Their goal is to increase the disability vote through voter registration drives and voter education in order to protect and foster community civic engagement for Americans with disabilities. 

I am involved with REV UP and ACI to help make the disability vote count. I am passionate about being the voice for the voiceless and speaking out on behalf of the disability community. 

According to the Rutgers Program for Disability Research, the voting turnout of people with disabilities is on the rise. Close to 62% of people with disabilities voted in 2020, compared to 56% in 2016. These statistics reveal the importance of motivating the next generations to register and vote.

However, voting suppression also continues to rise. Therefore, it is crucial for voters with disabilities to urge Congress to expand and improve the John Lewis Voting Rights Act to preserve our democracy and protect the rights of people with disabilities. 

As a seasoned voter for over 45 years, I have learned that every vote counts and every election matters, whether it is the school board or the Presidential election. Voting is the best way to voice your opinion on issues that are important to you. In the disability community, we advocate for “Nothing About Us, Without Us”.

The theme of REV UP, “Register, Educate, Vote, Use Your Power”, is of vital importance to me because it sends a powerful message to voters with disabilities. I strongly believe that it is crucial to inform voters with disabilities that they have options when planning to register to vote.

As a voter with a disability, you have the right to:

• Vote privately and independently
• Have an accessible polling place and accessible voting machines
• Seek assistance from workers at the polling place who have been trained to use the accessible voting machines
• Bring someone to help you vote. (As long as that person is not your employer or union representative. Different states may have additional restrictions on voter assistance.)

For this upcoming election, and all elections, I encourage voters with disabilities to use your power to vote and join REV UP. The final message that I want to send to all voters with disabilities is to remember that:

Our vote matters!
Our vote is our voice!
Our voices deserve to be heard!         

Remember what Justin Dart, known as the Godfather of the ADA, said…

“Vote as if your life depends on it … because it does!”

To get connected to REV UP New Jersey and or find a REV UP coalition in your area, go to: www.aapd.com/revup-join/. You can find state coalition calls and national calls on our REV UP Event Dashboard. The next REV UP National Call will be on November 19, 1-3 p.m. ET. Stay connected to the REV UP movement by joining our listserv.

Bio: Doctor Jacqueline Jackson, is a “Voice for the Voiceless” and a strong well-known advocate in New Jersey and is passionate about restoring the Americans with Disabilities Act (ADA). 

Jackson has been instrumental with her advocacy efforts with the Association for People with Disabilities (AAPD/REVUP), Alliance for Independence (ACI) and the National Multiple Sclerosis Society (MS) lobbying on the local level, the state level in Trenton and on the federal level in Washington DC. Jackson has visited the White House many times and has personally met President Obama.  

The post The Disability Vote Matters appeared first on AAPD.

Photo of Emma O’Neill-Dietel

Can a historian’s work be linked to activism while still giving a fair and balanced account of history? As a Master’s of Public History student at the University of Massachusetts Amherst, I spent the summer confronting this question while I researched queer disability history for my degree. 

In the field of public history, which refers to history outside of an academic setting, like in museums, historic sites, and digital media, scholars and practitioners have long debated how historians should walk the line between academia and activism. Because I am queer and disabled, my scholarship, activism, and identities are difficult to separate.

I spent the summer of 2025 researching and writing about disability history for the Rainbow History Project, an archive of local queer history in Washington, D.C. This research culminated in an interactive map and digital exhibit on Deaf LGBTQ+ history in D.C., along with internal resources on disability history for the archive. 

Outside of work, I attended political and cultural events within D.C.’s queer and disabled communities: protests, rallies, speeches, and even a disability pride cabaret. Come August, I protested the federal occupation of D.C., too. These events were more than just how I spent my free time; they were reminders of why I wanted to work in this field in the first place.

While I was working in D.C., the White House announced an internal review of Smithsonian exhibits, which will no doubt target LGBTQ+ history, disability history, and other so-called “DEI topics.” This review follows efforts to erase queer history in schools and historic sites, attacks on trans people, an attempt to challenge gay marriage in the Supreme Court, and the dismantling of Medicaid. 

In the face of all of this, it was easy to feel discouraged and feel like my work is minuscule compared to the urgent needs of my community. But gathering with friends and strangers to protest, and even to celebrate in spite of it all, gave new meaning to my academic work. People I met at community events were excited to learn about my research and pleasantly surprised to know that there are still institutions willing to fund it. I tapped into the most pressing issues facing queer and disabled people today to better understand how they relate to our historical struggles. Even the simple act of seeing and talking to fellow disabled people on a regular basis kept me grounded and reminded me how much our shared history connects us.

I often think about a set of photos I encountered in my research that show Deaf Washingtonians partying at Pride and walking in the March on Washington for Lesbian and Gay Rights from the 1970s to the 2000s. In the photos, people beam with pride while waving colorful banners and signing “I love you” to onlookers. 

I also think about the disability activists who held the line with queer activists when they demanded that people with HIV/AIDS be included in the Americans with Disabilities Act. These moments in history bring me hope, joy, and recognition of a piece of myself.

The Rainbow Alliance of the Deaf and the Lambda Alliance of Gallaudet University marching in the 1987 March on Washington for Lesbian and Gay Rights (Steven Frank & Ed Knight, March on Washington Collection, Rainbow History Project)

At a recent event honoring queer disability activist Stacey Park Milbern at the Smithsonian National Museum of American History, Stacey’s friends and colleagues Yomi Young and Mia Ives-Rublee talked about the importance of ancestors in the disability community. Because many of us are born to families that don’t share our disabilities, and because our community is vast and disparate, it is up to us to seek out our ancestors and honor them. 

The two speakers talked about Stacey as an ancestor and recalled how hard she worked to connect disabled people to each other in a long lineage of community. For queer people, the search for queer ancestors is much the same. It wasn’t until that event that I fully understood my desire to see myself in history as part of my search for my own ancestry.

History is political because the lives of the people and communities I study are inherently political. Queer people and disabled people are currently under continual political threats that mirror what we have endured in the past. Celebrating our history, especially when paired with action in the present, has the potential to buoy us through hard times. 

My work as an aspiring historian is balanced, thoughtful, and factual. But as long as queer and disabled identities are politicized, my work cannot be neutral. Aligning with activism will remain part of my historical practice.

Emma O’Neill-Dietel is a master’s student at the University of Massachusetts Amherst studying public history at the intersection of gender, sexuality, and disability. Emma is currently a Totman Fellow with the DC History Center and has worked on public history initiatives for numerous organizations including WETA PBS, the National Park Service, National History Day, and the Smith College Historic Clothing Collection.

The post Queer Disability History Can’t Be Neutral appeared first on AAPD.

The Fall Internship Program, now in its third year, builds on the success of AAPD’s Internship Program model to develop stronger disability identities within students and recent graduates with disabilities, so they can better shape the future of our workplaces and communities. Due to the fully virtual and part-time opportunity, our Fall Internship Program provides more flexible opportunities for disabled students and recent graduates to access meaningful employment, gain leadership skills, and connect to the broader disability community. 

During the program, AAPD provides interns with a competitive wage, technology support, mentorship, and many networking and educational opportunities. Interns also participate in AAPD’s Disability Advocacy Certificate Program and learn about effective advocacy methods and key issues within the disability community. The Fall interns met in-person at the end of July during the week of the anniversary of the Americans with Disabilities Act, prior to the start of the internship, to build connections and get to know each other (and some of the summer interns!).

ID: A group of AAPD interns wearing masks are gathered around the yellow AAPD sign at the AAPD office.The interns in the group are diverse in their  races, genders, and disabilities. 

During their visit to DC in July, the AAPD  AAPD interns attended many disability community events and activities, such as:

• Welcome Dinner with fellow fall interns and the AAPD Internship Staff
• Disability Object Talk with curator Katherine Ott at the National Museum of American History
• AAPD’s American with Disabilities Act Anniversary Celebration with NCIL
• Disability Trivia 
• Dessert Social to network with AAPD staff 
• Professional headshots by Jeevan Portraits

The 2025 Fall Internship Class is:

• Ahna Guillaume (he/they) – National Black Justice Collective
• ileim moss – Partnership for Inclusive Disaster Strategies
• Jason Green (he/him) – Caring Across Generations
• Joshua Blackwell (he/him) – Unlock Access
• Kemper Gingerich (he/him) – Center for Democracy and Technology
• Maddox O’Rourke (he/him) – World Institute on Disability
• Makayla Allen (she/her) – Autistic Women & Nonbinary Network
• Marrow Kilgore (they/them) – Project LETS
• Nicole (they/she) – New Disabled South
• Rocío Díaz (she/her) – National Disability Rights Network

You can read the Fall 2025 Intern’s full bios and learn more about them here.

The 2025 AAPD Fall Internship Program would not be possible without the generous support of Arconic Foundation.

The post Introducing the 2025 Fall Internship Program Cohort appeared first on AAPD.

Photo of Emmett Lockwood

Content warning: this post discusses disturbing topics including environmental disasters, wildfires, Indigenous residential schools, death, and educational abuse of Indigenous children.

Our bodies bear the scars of the land and the land bears the scars of our bodies. I use this phrase when trying to explain how I conceptualize my own embodiment. I am a mixed white and reconnecting Pimicikamak Cree person. I am also a disabled, Crip, and Mad person. I find that Cree cultural beliefs help me frame my embodiment. The ongoing climate crisis shows us how warfare and environmental collapse are making us all more disabled. While this awareness is important, it is worth noting how for many Indigenous people, our bodies and the land can’t be nicely separated.

Our bodies bear the scars of the land. This summer I watched in horror as wildfires ripped through Pimicikamak Cree Nation reservation land. While I grew up disconnected from the community living in the U.S., the images left me grieving. Pimicikamak people were forced to evacuate down to Winnipeg, nearly 500 miles away. Evacuees did not know what would be left of the community or whether the Kichi Sipi, the river running from ᐄᐧᓂᐯᐠ Wînipêk (Lake Winnipeg) to ᐐᓂᐹᒄ Wînipâkw (Hudson Bay), would keep out the fire. 

These fires were life threatening. The primary road route to Winnipeg, highway MB-6, went directly through the path of the fire. For many people, the quickest way to escape was by plane. While the tribal government stepped in to arrange hotel accommodations and priority evacuation for those with asthma, pulmonary conditions, or other disabilities that would be exacerbated by the smoke and fire, the wildfire smoke spread throughout the province, affecting air quality for everyone.

The tribal government had to scramble to cover the medical and food costs for over 800 of the wildfire evacuees, and external organizations attempting to replace medications and medical devices encountered delays. Evacuation and wildfires are especially dangerous for disabled people who often experience the worst effects of smoke, lack accessible communication about planned evacuations, and face barriers to medical care during protracted evacuations.

Destruction of land is not new. Indigenous land, whether it be through wildfires or flooding, has disproportionately faced the environmental impacts of settler colonialism for centuries. For instance, in 1979, Manitoba Hydro built the Jenpeg dam right off Pimickimak Cree reserve land as part of a larger hydroelectric project. This dam led to flooding of treaty land, including land often used for traditional ceremonies. 

This destruction doesn’t just disable the land, but disables us along with it. Environmental exposure to wildfire smoke fills our lungs. The loss of our land is a form of generational trauma. Colonization keeps burning and flooding our homes and our bodies along with it.

The land bears the scars of our bodies. In 2024, ground-penetrating radar was used to locate mass graves of children. These children, many of whom were Pimicikamak, were killed while attending the Cross Lake residential school. The Cross Lake residential school was run by the Catholic church from 1915 to 1969. 187 ground anomalies were found in a survey of school grounds and other areas formally held by the residential school.Each anomaly was a child’s body. Before the use of radar, there had been records found that suggested 85 students died while attending the school. The radar discovered close to 200 children’s bodies, found without names. 

These children’s spirits, descendants, and communities do not have any  closure. The land holds our children. The land holds our ancestors deep in its dirt. The land keeps their small bones safe from the elements. The land waited for us to one day discover the scars in the land. The land waited for us to acknowledge the trauma we all carry as First Nations people from the brutal history of residential schools.

My body and history can’t be dissected from the land. ᐊᐧᐦᑯᐦᑐᐃᐧᐣ wahkôtowin is a Cree belief that we are in relation with the land, plants, animals, each other, spiritual beings, our ancestors, and our descendants. Wahkôtowin includes understanding that violence against the land harms people and vice versa. As we work towards decolonial disability justice, we can’t keep using conceptions of disability that continue to locate disability only in the body. We must remember that our bodies and the land are connected, and we must build systems that honor that truth.

Emmett Lockwood (he/they) is a mixed white and Pimicikamak Cree, queer, disabled, Mad and Crip scholar and current graduate student at York University pursuing an M.A. in Critical Disability Studies. Lockwood was a 2024 AAPD Summer Intern and has served in various non-profit and legislative disability policy roles. Their current research interest is looking at how Indigenous Data Sovereignty and data privacy play out in healthcare systems that are increasingly driven by artificial intelligence.

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A picture of Marcy Hannah Waring standing in front of a grey background. She is a light skinned Latina/Asian woman with shoulder length blonde hair, brown square glasses, and red lipstick. She looks at the camera with a slight frown. She wears a beige blazer over a white shirt.

Content warning: this post discusses disturbing topics such as eugenics and anti-autistic ableism.

Robert F. Kennedy Jr. made an announcement back in April that Donald Trump gave him a mission on day one of his presidential term — find the cause of the supposed autism “epidemic”. I have previously debunked the “autism epidemic” lie as a combination of expanded diagnostic criteria, increased knowledge, and greater diagnoses among marginalized communities. Many others in the autistic community have made similar fact-checks. 

Yet, on September 23rd, Kennedy ignored our evidence-based outcry and claimed to have reached his goal. In this announcement, the Trump administration advised pregnant individuals to avoid acetaminophen products, commonly sold under the brand name Tylenol. The administration referenced studies that found an association between prenatal exposure to acetaminophen and neurodevelopmental disorders like Autism Spectrum Disorder (ASD) and labeled prenatal acetaminophen use as a supposed cause of ASD. 

Fact checkers were quick to jump on this claim and label it an inaccurate stretch of science. Zero studies have shown a causational relationship between prenatal acetaminophen use and ASD. Only an association has been suggested. An association is very different from a cause.

The Trump administration took this imaginary causal relationship and ran with it despite its scientific flaws. They suggest that ASD is something to be prevented – and that expecting mothers should play a role in that by refusing acetaminophen. During the September announcement, President Trump directly appealed to mothers:

“You shouldn’t take [Tylenol] during the entire pregnancy…[Only in cases of] extremely high fever that you feel you can’t tough it out, if you can’t do it…that’s what you’re gonna have to do. You’ll take a Tylenol…Fight like hell not to take it” (President Trump, 2025)

This is a clear, though inaccurate, guide for mothers to avoid having an autistic child. This creates a real risk that mothers to autistic children could be socially stigmatized and blamed for their child’s autism. A PBS documentary titled “Refrigerator Mothers” platformed mothers of autistic children in the 1960s to tell their stories. Their message was clear: maternal blame leads to familial separation. 

A serious question needs to be asked – Why is this administration trying to tell individuals how to avoid birthing an autistic child?

The answer is in eugenics. Eugenics has three principles.

1) Humans with undesirable qualities should be prevented from being born into society.
2) There should be attempts to cure undesirables if they manage to enter society.
3) These undesirables should avoid reproduction due to the risk of creating more of them in society.

We heard these principles clearly throughout the administration’s announcement:

“[We are discovering] how patients and parents can prevent and reverse this alarming trend” (Kennedy, 2025)

But I do not want a cure. I do not think my mom should have prevented me. And I certainly do not want a crucial part of my identity to be reversed. What I want is for U.S. politicians to stop bemoaning my existence and to actually fund supports for my community.

People might say I am overlooking the stressful aspects of autism or ignoring the parents of children with profound autism who do want a cure. I am not overlooking this, I just have a different perspective. 

Yes, I hit myself during meltdowns. I get exhausted from my strong emotions. I go nonverbal at the worst times. And, yes, my sensory issues are so intense that sometimes I even forbid my partner from holding my hand. 

But I get treatment for these issues. My concern is not with voluntary treatment that helps us manage the difficult symptoms of ASD. My concern is with the harmful ideas of a “cure” and  “prevention.”

Stop conflating ASD treatments with ASD cures and preventions. You cannot honestly claim to love an autistic person while simultaneously wishing they weren’t born the way they were. You cannot claim that changing someone’s identity is in their best interest unless you are a proponent of conversion therapy. 

I ask you to consider that autism itself has the power to bring people joy. I experience happiness to the extreme. My partner loves my vocal stims. I can be entertained by the simplest things. I show people love in the most unique ways. 

Autistic people deserve acceptance and support. Not a cure, prevention, or reversal.

Marcy Hannah Waring (She/Her) is an autistic self-advocate of color. She speaks on behalf of herself in this piece, though she hopes her voice can be a comfort to other autistic people in this difficult time. Outside of writing, she is a government affairs intern at The Arc of Massachusetts and a Research Assistant at The Lurie Institute for Disability Policy.

The post I am autistic. No, I don’t want a cure. appeared first on AAPD.