The image is in black and white. There are four adults standing against a white background. They're smiling and looking at each other.

Autism Acceptance Month: Celebrate Differences

April is Autism Acceptance Month, celebrating the talents, contributions, and diversity within the autism community. At The Arc, autistic people and their loved ones are a part of our staff, volunteer leaders, and key people guiding our work every day. Their lived experiences are vital, as an estimated 1 in 36 children in the U.S. have autism—reflecting a large yet persistently underserved population.

The big picture: Autistic people deserve to be embraced and valued by our society. Too often, they face misunderstanding, discrimination, and lack of access on all fronts—in education, employment, justice systems, and community life. True inclusion means creating environments where diverse needs are accommodated, allowing people with autism to thrive as their authentic selves.

History and shift to acceptance: The roots of Autism Awareness Month trace back to the Autism Society’s first celebrations in April 1970. In 1988, President Reagan issued the first presidential proclamation for National Autism Awareness Month. The paradigm shifted in 2021 when Autism Awareness Month became Autism Acceptance Month, a powerful reframing putting the emphasis on creating an inclusive society that celebrates autistic people all year long. This evolution moved beyond awareness to dismantling stigmas, fostering respect, and enabling autistic people to fully participate in society as their authentic selves. This shift matters because the language we use holds profound importance in affirming identities and human dignity.

Another note on language: Many in the autism community prefer identity-first language (“autistic person”) over person-first language (“person with autism”). Many autistic people view their autism as an inseparable part of their identity and take pride in who they are.

What we’re doing: The Arc is uplifting the voices and perspectives of autistic people in April and beyond. Learn from two powerful leaders on our national Board of Directors:

Join us in embracing the unique strengths and boundless possibilities within the autism community.

🧡 Donate to The Arc’s life-changing services and advocacy for people with autism.
⭐ Volunteer with your local chapter of The Arc to champion inclusion.
📣 Amplify stories from autistic people by following #ActuallyAutistic and use #AutismAcceptanceMonth to join the conversation.

“True inclusion is ensuring people with autism have every opportunity to live life to the fullest. When we listen deeply and make spaces truly welcoming and inclusive—that’s when everyone can shine brightest.” – Katy Neas, CEO of The Arc

A diverse group of young adults with disabilities stand together in a circle with their heads close, smiling. The view point is looking up at them from inside the circle.

Developmental Disabilities Awareness Month: Shattering Stigmas & Obstacles

March is Developmental Disabilities Awareness Month, a time to uplift the diverse talents and dreams of people with developmental disabilities. Common developmental disabilities include autism, cerebral palsy, Down syndrome, and learning disorders.

The big picture: At The Arc, we believe people with developmental disabilities deserve every opportunity to live the life they choose. One where they have equal access to education, employment, health care, and community living. This month, we celebrate their stories while advocating for a society where barriers to inclusion no longer exist.

History: The roots of Developmental Disabilities Awareness Month can be traced back to 1987 when President Reagan first declared March as a month to raise awareness and “according to our fellow citizens with such disabilities, both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.”

This year’s theme from the National Association of Councils on Developmental Disabilities, A World of Opportunities, highlights a future where all people with developmental disabilities can thrive and pursue any path they choose.

What we’re doing: The Arc’s vast grassroots network is creating a world where people with developmental disabilities have the opportunities and support they need to thrive. This month, we’re spotlighting people who are blazing trails as self-advocates and leaders.

Like Ashley, a woman with a developmental disability who champions diversity, equity, and inclusion. And Steve, a self-advocate in Virginia who fought for nine years to gain his independence after being placed in a nursing home is living proof people can thrive in their communities. And Carlos, who overcame barriers to graduate college and is now working in accounting but still faces prejudice. And Mitch, a self-advocate in Colorado and a longtime board member at The Arc, who is a voice for how we should be supporting people with disabilities.

Join The Arc in celebrating Developmental Disabilities Awareness Month.

🧡 Donate to The Arc to support our advocacy and services, making inclusion possible.
⭐ Volunteer with your local chapter of The Arc to empower people with developmental disabilities.
📣 Share stories uplifting diverse perspectives using #DDawareness2024.

“Segregation and discrimination still cast an ugly shadow over the lives of millions of people with disabilities. This month, we must amplify the voices calling for true inclusion—in our schools, workplaces, and communities. When we listen to self-advocates and remove unfair barriers, incredible contributions shine through.” – Katy Neas, CEO of The Arc

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Texas Voters With Disabilities Share their Stories

The following blog post was originally published on the Legal Defense Fund’s website and is reposted here with permission. View the original blog here.

In San Antonio, Texas, community members and advocates gathered outside of the federal courthouse on October 2, 2023 with emblazoned signs in hand, shouting spirited chants. As a trial was underway inside, echoes of their rallying calls for voting rights reverberated through the city streets. Candace Wicks, a retired teacher who traveled 300 miles from Dallas to show her support, shared her story to the burgeoning crowd with a mixture of frustration and determination. Wicks, a Texas native who has disabilities, has remained unwavering in her commitment to voting her entire life—yet since the state’s restrictive voting law S.B. 1 was passed in 2021, she has faced significant barriers participating in the electoral process.

In last year’s midterm elections, Wicks encountered an array of obstacles in attempting to exercise her right to vote. Wicks, whose legs and nine fingers are amputated and does not have a consistent signature, had her ballot denied because of a new signature verification process that S.B. 1 requires. Wicks also cited the law’s curbside voting restrictions and additional, limiting requirements on voter assistance as detrimental requirements for disabled voters.

“People with disabilities already face numerous barriers and discrimination in their daily lives,” Wicks emphasized in her speech. “Voting should not be added to that list. Our democracy is only strong when it represents all its citizens.”

Wicks is a member of Delta Sigma Theta Sorority Inc., a historically Black service-based sorority that is named a co-plaintiff in the lawsuit challenging the voter suppression law. Lupe v. Abbott, composed of five lawsuits including Houston Area Urban League v. Abbott, argues that S.B. 1 is discriminatory, imposing undue barriers on voters to participate in elections, especially voters of color and voters with disabilities.

Plaintiffs including the Delta Sigma Theta Sorority Inc., Houston Area Urban League, and The Arc of Texas argue that S.B. 1 violates the United States Constitution and Section 2 of the Voting Rights Act by targeting and burdening methods and means of voting, like drive-thru voting and 24-hour voting, that are largely used by voters of color. Plaintiffs also argue the law violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 208 of the Voting Rights Act by inflicting barriers to voting on voters with disabilities by imposing restrictions on voter assistance and making it harder to vote by mail, denying them full and equal opportunities to participate in the state’s voting processes.

The six-week trial began on Sept. 11. In that time, witnesses took the stand to provide testimony about their own experiences attempting to access the ballot box. Since being enacted in 2021, the law has already had grave consequences, rendering many residents unable to vote and making the process of voting far more onerous and burdensome, resulting in significantly longer voting times and physical pain for some voters with disabilities. Some who attempted to vote had their ballots denied.

For the several millions of Texans the law’s provisions impacts, including an estimated 3-5 million voting-eligible Texans with disabilities, the reversal of this legislation is dire for our nation’s democracy. All Texas voters, regardless of their identities or backgrounds, deserve to be counted—and their voices heard.

“People with disabilities already face numerous barriers and discrimination in their daily lives. Voting should not be added to that list. Our democracy is only strong when it represents all its citizens.” – Candace Wicks, Retired Dallas Teacher and Delta Sigma Theta Sorority, Inc. Member

 

Leading a Fight Against Voter Suppression in Texas

In the fight for an inclusive democracy in Texas, civil rights organizations are working together to fight S.B. 1 and bring forth justice.

“Our challenge to S.B. 1 highlights that voter suppression is a disability rights issue and that the fight against voter suppression lies at the intersection of disability rights and racial justice,” said Amir Badat, LDF Voting Special Counsel, who manages LDF’s Voting Rights Defender and Prepared to Vote projects. “There are millions of Texans who have a disability. Voters with disabilities are entitled to equal access to the ballot box. S.B. 1 undermines that right by increasing the already significant burdens that voters with disabilities must overcome to cast their votes and have them counted. By bringing this case, our plaintiffs who have disabilities are telling the world that their voices matter and must be heard.”

The lawsuit challenges multiple provisions in S.B. 1 that, by imposing undue limitations on voting, disproportionately impact voters of color and voters with disabilities.

Voting restrictions imposed by S.B. 1 include:

  • Limitations on early voting hours.
  • A ban on 24-hour voting.
  • A ban on drive-thru voting.
  • Limitations on the distribution of mail-in ballot applications.
  • Limitations and possible penalties for voter assistants, including criminal felonies.
  • Expansion of the authority of partisan poll watchers.
  • Criminal penalties against poll workers seeking to maintain order at the polling place.

“There are millions of Texans who have a disability. Voters with disabilities are entitled to equal access to the ballot box. By bringing this case, our plaintiffs who have disabilities are telling the world that their voices matter and must be heard.” – Amir Badat, LDF Voting Rights Special Counsel and Voting Rights Defender and Prepared to Vote Projects Manager

While the Texas state legislature makes claims of voter fraud, a myth long debunked by experts and advocates alike, the passage of the law is antithetical to true integrity and democracy—placing significant hardship on voters who have historically been counted out.

Texas is one of at least 18 other states that have passed voter suppression laws in direct response to voters from marginalized communities, including voters of color and voters with disabilities, making their voices heard in record numbers during the 2020 elections. Within Texas’s long history of voter suppression is a painful reality—the intentional suppression, prevention, and displacement of minority votes.

“People with disabilities have the fundamental right to vote and participate in our democracy, but this right has too often been denied,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States. “S.B. 1 disenfranchises voters with disabilities by making it harder to vote by mail and receive the assistance they need to vote, and it denies people with disabilities equal access to voting in violation of the law.”

Voting Rights Is a Disability Rights Issue

Texas Voters With Disabilities Share Their Stories

Four voters with disabilities who served as witnesses in the trial discussed how S.B. 1 impacted their ability to vote, and what they hope to see from the state’s voting policies moving forward.

Some quotes have been condensed for clarity.

TERI SALTZMAN, Travis County resident and member of The Arc of Texas and REVUP Texas

Teri SaltzmanTeri Saltzman is blind and faced a myriad of barriers to voting by mail in the midterm primary elections. Her mail ballot was rejected multiple times because the ID numbers she provided didn’t match her voter registration record. She could not cure her ballot online because the state’s website is inaccessible to blind voters. After four attempts at curing her ballot, she was notified that her ballot did not count. Saltzman’s ballot was again denied in November 2022.

“I registered to vote by mail based on my disability and I have always done this successfully in the past. When S.B. 1 passed, it was the first time in my life I had difficulty voting due to its ID requirements and burdens. I never had this amount of challenges voting. I was never unsure if my vote counted.

“S.B. 1 has meant a reversal of rights for this community. Disability rights has everything to do with voting rights. What they’re voting for—transportation, education, housing, all those things—are linked to their independence as a person with a disability. I will always vote. But when I look at the ballot [sitting here on my table], I look at it with trepidation. [Voting] is something that I love…it’s something that is important in my family. But now, after a whole year of fighting to exercise my right to vote, I have this hesitancy that I never had before. I’m mad that it is there. But I will still vote. I’m concerned about voters who are already hesitant—who if they come across these barriers, might be prevented from doing so at all.”

JODI LYDIA NUNEZ LANDRY, Harris County resident and member of The Arc of Texas and REVUP Texas

Lydia Nunez LandryJodi Lydia Nunez Landry has muscular dystrophy and has encountered significant barriers since S.B. 1 was enacted. Landry prefers to vote in person but is afraid to get voting assistance from her partner due to risk of criminal prosecution S.B. 1 has imposed on voter assistance. She explains that her disability is degenerative and that as a result, she will require even more assistance over time.

“I think voting is fundamental to our democracy. The people that we elect are the ones that hold the power and represent us and make policies that affect our entire lives. [Elected officials determine] whether disabled people can vote, get out of their homes or have employment and educational opportunities, whether people are institutionalized or whether they’re able to enjoy basic human rights.

“S.B. 1 has had a very profoundly negative impact on our community. My condition has progressed, and I’ve increasingly run into more obstacles [since S.B. 1 was enacted]. I completely rely on my partner, who is also my personal attendant, to assist me with things.

“I think it really boils down to whether people believe that disabled people or any people from marginalized groups are deserving of the full benefits of democracy. We’re all interconnected. Disabled people come from every walk of life. And I think that’s the beauty of, at least, the promise of democracy—we all get to enjoy the same basic human rights and privileges as everyone else.”

LAURA HALVORSON, Bexar County resident and member of The Arc of Texas and REVUP Texas

Laura HalversonLaura Halvorson has muscular dystrophy and chronic neuromuscular respiratory failure. Halvorson relies on a power machine, a breathing machine, and personal care attendants for a majority of her care. Halvorson has encountered significant barriers to voting since S.B. 1 was enacted. Unlike previous years, Halvorson could not get assistance to vote by mail. Her personal care attendant, who is a green card holder, was not willing to assist Halvorson with her mail ballot during the March 2022 primary due to the threat of criminal liability and the potential impact on her legal status. As a result, Halvorson had no choice but to open and mark the ballot herself—a process which took her multiple attempts and was significantly longer and more arduous than if she had been assisted. As a result of these challenges, Halvorson chose to vote in person in the November 2022 election — a process which again took her significantly longer and was far more difficult because she did not receive any assistance.

“This new voting law makes it even harder for people to vote and [is] a huge act of voter suppression in a state with already one of lowest voter turnouts in the country. Once S.B. 1 was enacted and I experienced new barriers in voting, I felt it was important to share my story.

“I hope voting becomes easier and more accessible for people with disabilities in Texas, but I do not see how that could be possible with S.B. 1 still in place.

“It is important for people with disabilities and others in our lives to let our voices and issues be heard by politicians and reflected in their platforms to show the power of the disability vote. About one in four Americans has a disability, and many acquire a disability through the aging process and now also through long Covid, so disability issues affect many people and/or their loved ones in the voting process and access.”

JENNIFER MILLER, Travis County resident and member of The Arc of Texas

Jennifer Miller is the mother of an adult daughter, Danielle, who has autism. Miller regularly assists her daughter to vote, yet has encountered significant barriers in doing so since S.B. 1 was enacted.

“I care very much about this country as a long-time resident of Texas, and I care very much about my daughter. She has learned civic responsibility, and as a person with a disability, voting really makes a difference for her and her community. As a supportive parent, I want to let my daughter have the best life she can and be independent. One of those factors is her being able to exercise her right to vote.

“Voting is a constitutional right. If [S.B. 1] continues, a lot of people might give up and not vote. And that’s not right, because their voices need to be heard. Voting is everything to marginalized communities. The [Americans with Disabilities Act] isn’t that old, and we’re still fighting for rights.”

Being Heard, Being Counted: Making Democracy Inclusive for All

Closing arguments in the trial will be heard in February 2024. As voters await the trial’s results, one thing is certain — every voter has a voice that should be heard through the electoral process, and all people, regardless of their identity or background, are entitled to fully participate in our nation’s democracy. Texas’s electoral process should be accessible to all. A true democracy should be more than an ideal—it should be fully enforced through protections for all voters, including those who have historically had their ballots left out.

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Why Black Disabled History Matters

The following blog post was originally published on the World Institute on Disability’s website and is reposted here with permission. View the original blog here.

By Dikko Yusuf

Black disabled history is an aspect of Black history, which informs world history. Black History Month is officially celebrated every year in the U.S., Canada, Ireland, and the UK. During this month, we celebrate the achievements of Black leaders throughout history and while many of these leaders also had a disability, that aspect is often minimized or overlooked. Black disabled people are multiply-marginalized, and more prominent awareness of the accomplishments of Black leaders, who are often also disabled, can help drive and inform systems change for the current and future generations of disabled people around the world.

Black Disabled Leaders in History

Disability has often been erased from the stories of many Black historical figures. Disabled activists Vilissa Thompson, Heather Watkins, and Ola Ojewumi all highlight how their exposure to Black history in school failed to account for the disabilities of Black civil rights leaders.

Abolitionist Harriet Tubman and pianist and composer Thomas Wiggins are good examples to consider here. Tubman had epileptic seizures since she was 12, and is remembered for leading enslaved Black people through underground passageways to freedom. Wiggins was born blind and is celebrated for being the first Black person to perform at the White House.

A historical account that recognizes Tubman’s disability is more likely to examine how her disability influenced how or when she did certain things. When we recognize Wiggins’ disability, his story becomes more than a musician’s biography; it becomes the history of disabled musicians.  Without an acknowledgment of their disabilities, their stories are incomplete.

Throughout history, many other Black disabled people helped to secure rights and representation for people with disabilities.

Fannie Lou Hamer was a leader in the Civil Rights Movement and the vice-chair of the Freedom Democratic Party. Johnnie Lacy helped found the Berkeley Center for Independent Living in 1981. She also served on Hayward’s Commission on Personnel and Affirmative Action, and the Mayor’s Disability Council for the city and county of San Francisco. Both Lacy and Hamer had polio and made an indelible mark for Black women and disabled people’s rights in the U.S.

Brad Lomax was yet another Black disabled leader who made history. Lomax was a member of the Black Panther Party and had multiple sclerosis and used a wheelchair. In 1977, he participated in the historic 504 Sit-ins at the San Francisco Federal Building and encouraged the Black Panthers to provide meals and other supplies to the protestors. The 504 Sit-ins achieved its objective on April 28, 1977, when the secretary of the Department of Health, Education and Welfare (HEW), Joseph A. Califano Jr., signed the regulations  to implement Section 504 of the Rehabilitation Act of 1973.

Joyce Jackson, who contracted arthritis at the age of 12, was also a civil rights activist. She was among 20 other activists that went to Washington D.C. to make a case to officials in the Carter administration for the implementation of Section 504 By the HEW.

Audre Lorde was a Black lesbian writer with breast cancer and civil and disability rights activist. Her powerful and evocative poetry broadly drew from her identity which included the intersections of racism, sexism, classism, ableism, and homophobia.

Lois Curtis was a disability rights advocate who grew up with cognitive and developmental disabilities and spent nearly 20 years in institutions, at different points in her life. The landmark Supreme Court ruling on her case, Olmstead v. L.C., that institutionalizing people with disabilities was discriminatory, was a monumental and watershed moment in the Independent Living Movement.

Black disabled leaders such as Fannie Lou Hamer, Brad Lomax, Joyce Jackson, Audre Lorde, Lois Curtis, Johnnie Lacy and many more championed civil rights and fought hard against ableism and racism. Black disabled history adds a comprehensive component to the way we interpret historical figures and events. It gives us a richer and clearer perspective on important moments today and throughout history.

As Florida Governor Ron DeSantis recently  blocked a Black studies course for high-achieving high schoolers and other conservative politicians push to block Black history from being taught in schools, we must make a concerted effort to make sure these stories are told. Black history acknowledges the experiences of oppression and marginalization faced by Black people and the systemic racism that Black people continue to face globally. When Black history is hidden, systemic racism continues to be denied by members of the next generation of leaders and decision-makers, and through that denial, the systems remain in place.

Black disabled history represents the experiences of multiply-marginalized individuals confronted by racism and ableism. During disasters and emergencies, for instance, Black disabled people, who often live in resource-deprived areas, experience worse outcomes in relation to white disabled people. They are also disproportionately impacted because their disability needs are not considered in disaster preparedness, response, and recovery. Apart from the oppressive racism faced by Black people, Black disabled people also have to contend with the ableism that limits their ability to access opportunities and resources. Additionally, Black disabled people face discrimination and violence through systems of policing. The limited data we have on the topic shows that more than 50% of Black disabled people will be arrested by the time they turn 28, and at least 50% of people killed by police are disabled. Many of the high-profile cases of Black people killed by police were significantly impacted by the victims’ disabilities, but very little media coverage acknowledges the impact of the combination of racism and ableism on these cases. Black people with disabilities also have to live with the fear of being further marginalized by disclosing their disabled identities.

“Black people may be hesitant to identify as disabled for fear of further discrimination based on that identity,” Ojewumi said.

This fear of discrimination also drives some Black people to hide their disabilities and code-switch or alter their language to sound less Black, around white peers. When we have Black disabled stories told in the mainstream media, we are able to create diverse and inclusive societies that recognize the experiences of a group that is often overlooked. When these stories are told, we are able to examine the intersectionality and sociopolitical ramifications of being Black and disabled.

Beyond Black History Month

Discussions about the achievements of Black disabled leaders should be held all year round, not just during Black History Month. Furthermore, it is important to not just celebrate Black disabled history, but to also work to create a society that is inclusive of Black disabled people. The disability justice framework is a great place to start. The disability justice framework recognizes the intersectionality of disabled people who belong to additional marginalized communities and is a necessary ideology to achieve the liberation of Black disabled people. When we acknowledge Black disabled history, we can create a better future for Black disabled people of today and tomorrow. Black disabled history is world history.

A woman in a wheelchair is holding a tablet and showing it to a man seated next to her who is holding a clipboard. They are in a work setting.

How and Why to Celebrate National Disability Employment Awareness Month: October 2023

National Disability Employment Awareness Month - Advancing Access & Equity - Celebrating 50 years of the Rehabilitation Act of 1973Each October, during National Disability Employment Awareness Month (NDEAM), we celebrate the many contributions and achievements of employees with disabilities.

Employees with disabilities are dependable, loyal, and eager to learn—and research shows that their inclusion in the workforce improves overall employee retention rate and morale. However, people with disabilities have been marginalized and misunderstood for generations, and 85% of people with intellectual and developmental disabilities (IDD) remain unemployed.

How to Celebrate NDEAM in October (And Year-Round)

There are many ways to observe and celebrate National Disability Employment Awareness Month. Here are a few ideas.

Learn about the value of people with disabilities in the workforce.

Share your disability employment story and help someone share theirs.

The Arc has collected disability employment success stories from both employees and employers. Read them and share them with your networks. Let’s help more people understand the value that people with disabilities bring to the workforce.

If you have a friend, family member, coworker, or neighbor with a disability who is employed, encourage them to share their story. We want as many people to join the conversation as possible! Share your stories on social media using #NDEAM or even reach out to your local news. Be sure to join The Arc’s celebration by following us on Facebook, Instagram, X (formerly Twitter), and LinkedIn and engaging with stories from the people we serve.

Look at your company’s disability hiring practices.

  • If you’re not actively hiring people with disabilities, here’s a tip sheet to help you get started.
  • Review your company’s policies and processes to make sure they are inclusive and comply with the Americans with Disabilities Act.
  • Train managers and supervisors to make sure they understand their role in fostering an inclusive workplace.
  • Post about NDEAM in your newsletter, on your website, or on social media to help increase awareness.
  • Participate in Disability Mentoring Day, which takes place on the third Wednesday in October.

Donate to organizations that actively promote workforce inclusion for people with disabilities.

The Arc has been working for the inclusion of people with intellectual and developmental disabilities in all aspects of life. Our nearly 600 chapters across the country have been connecting companies and people with IDD to make successful employment a reality. Support our work!

Is There a Theme for NDEAM in 2023?

Each year, the U.S. Department of Labor’s Office of Disability Employment Policy selects a theme for National Disability Employment Awareness Month. The 2023 NDEAM theme is “Advancing Access and Equity” to honor the 50th anniversary of the passage of the Rehabilitation Act of 1973.

A young man in a wheelchair outside next to a woman standing next to him. They are both dancing and smiling excitedly. In the bottom right corner are stripes in the colors of the Disability Pride Flag (green, light blue, white, yellow, and red). Across the bottom is white text against a dark gray background that reads "Celebrate Disability Pride Month."

Why and How to Celebrate Disability Pride Month 2023

Disability is a part of the rich tapestry of human diversity, and something that nearly all of us will experience at some point in our lives. It’s also a significant identity that defines how we experience the world. Yet people with disabilities have been marginalized and misunderstood for generations. All disabilities and their intersecting identities should be acknowledged, valued, and respected, and one way to do that is during Disability Pride Month.

Disability Pride Month is celebrated every July and is an opportunity to honor the history, achievements, experiences, and struggles of the disability community.

Why July? It marks the anniversary of the Americans with Disabilities Act, landmark legislation that broke down barriers to inclusion in society. But barriers still exist, which is why we need to honor every kind of disability, the people who identify with them, and the wide range of supports they need to thrive. Here’s more about the history of Disability Pride Month and the story behind the flag.

Looking for ways to celebrate Disability Pride Month? We’ve got you covered.

Learn

The History of Disability Rights in the United States

The Diversity of Disabilities

Although society often thinks of people with disabilities as a single population, it’s actually a diverse group of people with a wide range of needs. Get an overview of the different types of intellectual and developmental disabilities (IDD).

Meet People With IDD

All people with disabilities, including those with IDD, have hopes and dreams just like everyone else – such as social inclusion and employment. Watch and read their stories on The Arc’s story hub.

Share Your Disability Story or Help Someone Share Theirs

Disability Pride Month is a spotlight on what disability pride means and what people with disabilities are proud of. If you feel comfortable and safe to do so, share your story on social media and include the hashtags #DisabilityPride and #DisabilityPrideMonth.

If you have a friend, family member, coworker, or neighbor with a disability, encourage them to share their story. We want as many people to join the conversation as possible! Share stories on social media using #DisabilityPride and #DisabilityPrideMonth or even reach out to your local news. Be sure to join The Arc’s celebration by following us on social media @TheArcUS and engaging with stories from the people we serve.

Take Action

Reach Out to Your Elected Officials

One of the most important ways you can get involved in the disability rights movement is by educating your elected officials about policies that harm and strengthen the quality of life of people with disabilities. Make sure you bookmark The Arc’s Action Center for timely alerts!

Donate to The Arc

For nearly 75 years, The Arc has been at the forefront of positive change in disability rights, and we’re not slowing down! Donate to join our grassroots movement that is creating policy, programs, and possibilities for people with IDD.

Show Your Pride

Get our new, limited edition “Disabled and Proud” T-shirt and show your support for people with disabilities.

Teach Your Kids to Acknowledge and Include Disabled People

Talking to your kids about disability is an important and ongoing conversation that will help foster inclusion for the next generation. To find age-appropriate tips, read these articles from TODAY.com, HuffPost, and Cincinnati Children’s.

Attend a Disability Pride Month Event in Your Area

Show pride for your disability and/or help uplift others in your community by attending a Disability Pride event! There isn’t a database for Disability Pride Month events (yet!), but below are a few coming up in major cities.

Hire People With Disabilities

Our society’s long history of discrimination against people with disabilities continues to translate to their unemployment and underemployment. Right now, 85% of people with IDD are unemployed. Many of them want to work and have skills to contribute. Among those who are employed, people with IDD are working fewer than 13 hours a week on average and less than one-fifth of them are getting workplace benefits. But research shows that disability inclusion is a proven good business decision. It increases overall productivity, offers a window into an untapped market, and boosts bottom lines. Learn more about why and how you should hire people with disabilities in featuring The Arc and by reading stories from employees and their employers.

There are many other ways you can celebrate Disability Pride Month, and we hope this list gives you a good starting point. Thank you for doing your part to amplify the voices and experiences of people with disabilities!

A white woman with blonde hair to her shouldersstands smiling with her arms at her sides in front of an office desk cubicle. She is wearing a white t shirt, black pants, and white shoes.

When Small Talk With a Stranger Led to a Thriving Career: Amy’s Story

A white woman with blonde hair stands smiling with her arms at her sides in front of an office desk cubicle. She is wearing a white t shirt, black pants, and white shoes. After graduating from high school and realizing college wasn’t the right path for her, Amy—who has a learning disability—knew she was ready to begin building her career. She started with typical jobs for young adults, working at Bath and Body Works and Giant Food for several years while taking classes at the local community college until a chance meeting in the college parking lot changed her life.

Amy encountered a woman in the parking lot and engaged in some polite small talk. Serendipitously, the woman’s daughter also had a disability and was currently seeking a job. She had contacted a program called Project SEARCH, and the woman passed the information for the program along to Amy.

Project SEARCH is an employment program for people with disabilities that aims to train and place each participant in competitive and rewarding employment through a series of internship rotations. As an added bonus of the program, the placements help demonstrate to businesses the long-term value of hiring people with disabilities and the wide range of jobs they can be successful in.

Amy enrolled in the program and began her placements, including one at the Montgomery County Department of Finance Treasury Division.

Amy and her assigned employee mentor MaryAnn got along right away—she even had chocolate and a pen ready for Amy’s first day. They got to work learning about homestead compliance and correcting records in the department’s system. Amy learned what it took to succeed in an office job and focused on building skills and making herself an asset to the department.

Amy chose to pursue a Treasury Department job after all of her rotations were done and was thrilled to secure a full-time, competitive job there where she thrived in an environment where people believed in and supported her to succeed. Amy notes “When I first got hired, I was so grateful. I didn’t say it, but inside deep down, because I didn’t really know if it was going to happen. I felt really focused.”

Now 32 years old, Amy is still at the same job enjoying her work, and is optimistic about what her future holds.

“I like everyone I work with. They like working with me too. I am most proud of working on property tax refunds. I research accounts ahead of time to figure out who is eligible for a refund, and then take their information and add the record into our system so it can move to the next step. I’ve gotten better at it over the course of my time there and I like working in Excel.

I’m coming up on my 10-year anniversary, which makes me proud. I do think about the future and maybe learning more skills. It’s been quite the journey.

I have a job coach I see during work, but I live by myself. I have a one-bedroom, and my parents help me with things and have been supportive. They retired to Florida, and I miss them a lot. They come up and visit, and I fly down to stay with them.

When I’m not working, I like to run. It helps me. I don’t get to do it often because of my job, but anytime I can do it, it helps me think better. I like to hang out with friends—it’s good to be social.

Having a job allows me to be independent, buy groceries, pay housing expenses, and go out to dinner with friends.

I hope people don’t give up on their dreams and their goals. It’s very important to work and try to make a good life for yourself.”

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National Disability Rights Groups Applaud SCOTUS Decision in Perez v. Sturgis

Today, twelve national organizations which filed an amicus brief in Perez v. Sturgis Public Schools offered congratulatory and supporting statements in light of the  unanimous 9-0 decision of the U.S. Supreme Court (the Court) in support of plaintiff Miguel Perez. As recommended by disability advocates, the Court’s decision reverses the decision of the Court of Appeals for the Sixth Circuit to protect students with disabilities and will ensure that students are able to use civil rights remedies as provided under the Individuals with Disabilities Education Act (IDEA).

In response to the decision, the organizations offered the following statements:

Shira Wakschlag, Esq., The Arc of the United States, Senior Director and General Counsel: “Miguel Perez is just one of millions of students with disabilities who face a multitude of barriers in getting the supports and services they need to thrive in school and to build the future they desire,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc. “These barriers, which include overt segregation and discrimination, force parents and children to become experts in self-advocacy and the law in order to get the education they are entitled to. Consistent with the language of the ADA and IDEA, today’s unanimous decision in Perez v. Sturgis Public Schools removes unnecessary burdens from families seeking relief and helps ensure that students with disabilities and their parents are able to pursue every avenue of justice available to them when their civil rights are violated.”

Selene Almazan, Esq., Council of Parent Attorneys and Advocates, Legal Director: “COPAA led the development of the amicus brief to ensure the Court heard from parents, advocates, and attorneys about the IDEA’s civil rights protections, including that the law does not require a student and their family to exhaust their administrative remedies to bring forward non-IDEA civil rights claims. The decision today affirms this critical aspect of the law.”

Elizabeth Athos, Esq., Education Law Center, Senior Attorney of Educational Equity: “The Court’s recognition that Congress does not require students with disabilities to litigate under IDEA before seeking relief under federal antidiscrimination laws that IDEA cannot provide is an important vindication of student rights. We are grateful to Miguel Perez for representing the interests of a great many children with disabilities, to COPAA for ensuring that the voices of students with disabilities and their families were expressed, and to the Court for applying faithfully the law written by Congress.”

Dr. Jacqueline Rodriguez, National Center for Learning Disabilities, CEO: “The National Center for Learning Disabilities applauds the Supreme Court’s decision in the Perez case to ensure all families have access to a high-quality education. We commend the Perez family for their steadfast commitment to protecting the rights of students with disabilities and their families. No family should have to endure what the Perez’ went through in order to maintain their legal rights but because of their efforts, families of students with disabilities continue to have the tools necessary to remedy a situation if their child is not provided their right to a free and appropriate public education.”

Dan Stewart, Esq., National Disability Rights Network, Managing Attorney: “Today’s U.S. Supreme Court’s unanimous decision is a common-sense affirmation of a student’s right to pursue claims with different remedies under different laws. The earlier court decisions prohibited Miguel from pursuing monetary damages under the Americans with Disabilities Act (ADA) after he had settled his education claims under IDEA, the Individuals with Disabilities Education Act. In recognizing those differences in the context of complex litigation, the Court provided much needed clarity that students like Miguel can seek full relief for the wrongs they suffered. We would like to extend a special congratulations to Disability Rights Michigan, the Protection and Advocacy agency for the state of Michigan who started work on this case back in 2017 for following it to a successful conclusion today.”

Signers of the Amicus Brief: The Arc of the United States, The Autistic Self-Advocacy Network (ASAN), Communication First, The Coelho Center for Disability Law, Policy and Innovation, Council of Parent Attorneys and Advocates, Education Law Center, Innisfree Foundation (Innisfree), Learning Rights Law Center, National Center for Learning Disabilities (NCLD), National Center for Youth Law (NCYL), National Disability Rights Network (NDRN), National Federation of the Blind (NFB).

Perez v. Sturgis Public Schools was argued before the U.S. Supreme Court on January 18, 2023. Miguel Perez is represented by Roman Martinez, Latham & Watkins. Also representing Perez are: Ellen Marjorie Saideman, Law Office of Ellen Saideman; Marc Charmatz and Leah Weiderhorn, National Association of the Deaf Law Advocacy Center; and, Mitchell Sickon, Disability Rights Michigan.

URL to SCOTUS decision: https://www.supremecourt.gov/opinions/22pdf/21-887_k53m.pdf

URL to Amicus Brief: https://www.supremecourt.gov/DocketPDF/21/21-887/246668/20221116141113015_21-887%20Perez%20v%20Sturgis%20Brief%20for%20Amici%20Curiae%20The%20Arc%20of%20the%20US%20et%20a.pdf

 

A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

A Genetics Journey To Support What’s Possible in Life

Ellen Feldman has a passion for increasing research in the intellectual and developmental disabilities (IDD) field and continuing her ongoing advocacy in that arena. She currently serves as the Central Region Vice President for The Arc New York, and as a member of the Board of Governors and Executive Committee.

So, what inspires Ellen to devote her time and energy to this field? The answer is simple – her son.A middle-aged man stands in a kitchen with white cabinets. He is wearing a red shirt, and apron, and is using a cooking utensil on a sheet pan of food.

Ellen’s son, Matthew, is 40 years old; he receives supports and services through ACHIEVE, a chapter of The Arc, and has lived in a group home since he was 21. When Matthew was 14 months old, he was diagnosed with IDD and several associated symptoms – all with an unknown cause.

“We went to see the head of pediatric neurology at Columbia Presbyterian Hospital many years ago, and they couldn’t tell us what caused Matthew’s IDD,” Ellen said. “They couldn’t give us a real diagnosis. They basically told us that he’s going to be significantly delayed – he’ll never go to college and he’ll never drive a car. This news was crushing, of course. So we stumbled our way around, got him into early intervention programs, and did whatever we could.

“We’ve been down the path of lots of different hospitals and development centers, always looking – not for cures – but for ways to help him live his best life,” she said.

Ellen reached out to The Arc New York network for recommendations of an objective third party that might help her gain more answers. Ellen connected with a geneticist at Columbia Presbyterian Hospital, and was sent an at-home genetic testing kit. Her family did a series of saliva swabs and returned the package to be analyzed.

On Labor Day Weekend, she received a call that her son has a rare genetic disorder called SynGAP1.

There is currently no cure or specific treatment for the underlying condition that causes

SynGAP1. However, learning more about the symptoms related to the genetic disorder can help individuals find relief and better understand how to manage them. For instance, Matthew has been having staring seizures for a while, and when he comes out of these seizures, he has aggressive episodes.

“There was an incident where Matthew was staring at another individual, staff asked him to stop staring, and he wouldn’t stop,” Ellen said. “This continued until he all of a sudden got aggressive and angry. We now know that when you come out of a seizure, there’s a period of delirium where you’re confused and don’t know what just happened – this confusion triggers an aggressive response. Recognizing these symptoms and being calm instead of admonishing Matthew can help prevent these situations from happening.”

Genetic testing can also lead to the discovery of secondary conditions connected to SynGAP1. Ellen learned her son is at a higher risk of colorectal cancer, and as a result, he’s going for his colonoscopy and endoscopy at the age of 40 instead of 45, the recommended age for those not at risk.

GENETIC TESTING

Ellen understands that some might be apprehensive about genetic testing, especially when it can cost upwards of $3,000. However, she wants to share an opportunity for individuals to potentially get free and convenient genetic testing at home.

She discovered Probably Genetic, a company offering free genetic testing paid for by sponsors. The company’s website provides people with a questionnaire to determine if they are eligible for free testing. A physician reviews the answers, and if the person is considered to be a good candidate, they are sent a test that only requires a saliva sample. The test is returned with prepaid shipping and analyzed in the lab. In about eight weeks, a geneticist calls to review their clinical genetic report.

The SynGAP Research Fund also notes these genetic testing options:

  • Ambit provides free access to genetic counseling and testing to all patients who qualify. Testing is available in all 50 states and is open to all ages. Qualifications include: children age seven and under with at least one seizure; or anyone over seven with at least one seizure, one developmental delay and on at least one seizure medication.
  • Invitae’s Behind the Seizure free genetic testing program is offered to any child in the US or Canada under the age of eight years old who has had an unprovoked seizure. Australian residents can visit this website.

SYNGAP1 mutations are suspected to be the underlying cause of approximately 1-2% of all Intellectual Disability (ID) cases, making it one of the most common genetic causes of ID, similar to more well-known syndromes like Fragile X, Angelman and Rett Syndrome.

SynGAP1 mutations are significantly underdiagnosed. The disorder was only discovered in 2009, and testing didn’t begin until 2015, so any genetic testing completed before 2015 would not have shown SynGAP1.

Additionally, many families receive a diagnosis like autism, intellectual disability, or epilepsy and stop their diagnostic search, thinking they have reached a conclusion.

“I stopped looking for a diagnosis and a cause years ago and just focused on what I could be doing for my son,” Ellen said. “The more information we can load into research databases the more data there is for researchers to use. We’ve got to continue looking ahead to the future and always be thinking of what more we can be doing.”

 

 

A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

Expecting the Best From Me

By Nathaniel Lentz

A young man squats, posing with his dog and putting his hand on its head. He is smiling and there are evergreen trees behind them.Throughout my life there was one phrase that was ingrained in my brain: expect the best from myself. I always believed if there was something I really wanted to do, that I should not let my disabilities stop me. No matter how challenging or difficult something might be, I would work my hardest to succeed.

It started when I was very young. My parents treated me like any other child. They didn’t make things easier for me, but they also realized that I would need extra help. They would work with my public school teachers to make sure I had the support I needed to pass my classes. Sometimes my teachers would try to make things easier for me because they thought regular class assignments would be too hard. That did not sit well with my parents.

I remember a meeting with my mom and my sixth-grade teachers.  The teachers recommended that I sign up for a particular class because it did not require much writing. My mom strongly disagreed. She said more writing was what I needed, so I was assigned a class where the students had to write a lot, and I learned how to write.

From my elementary classes though the end of high school, I would study a lot more than most students. I would often spend weekends with my grandma. She would tell me that we could go to Taco Bell after I finished my homework. When I would wake up on Saturday morning, there would be a pile of practice tests and assignments that I had to finish before I could get some tacos.

When I was a senior in high school, I was interviewed by Disability Rights Wisconsin for a position speaking to high school parents and teachers about transitioning from high school to college or job training. That first engagement led to many more speeches advocating for people with disabilities at the local, state, and even the national levels.

My parents made sure that I took college prep classes, even though because of my learning disabilities, teachers thought I would never make it in college. But I had learned what I needed to succeed: study until I understood the material. A lot of my roommates would spend their weekends at parties or in bars. I spent my weekends in the library.

A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

Working on my college degree gave me the confidence to advocate for myself. If I saw that a professor would not work well with me, I would change to another. The same applied to tutors who were unhelpful. I also developed strategies that were somewhat unorthodox to help me learn the information at a fast pace.

Another way I advocated for myself in college was with living arrangements. If I felt my prospective roommates would make it harder for me to study, or who would ridicule me because of my disabilities, I would schedule a meeting with the Housing Director, and she would find a dorm or a room where my roommates would be respectful.

Because I advocated for myself, my college experience was the best. I had the right support, the right accommodations, the best professors a student could ask for. That is how I earned my bachelor’s degree.

Because I had my bachelor’s degree and with my experience as a public speaker, I was appointed to a position on the Wisconsin Board for People with Developmental Disabilities. Before my eight-year tenure on the board had ended, I had served on numerous committees, including the Executive Committee, and I was the Chair of the Nominating Committee.

Since then, I have been appointed to the Living Well grant. I was also hired by People First Wisconsin as an Outreach Advocate and selected to be an officer on the National Council of Self Advocates.

In my work for the Living Well Grant, I reach out to people with intellectual and developmental disabilities to ask about their experiences with the Safe and Free Curriculum, a program created by the Living Well staff to help people learn about self-advocacy, how to reach personal goals, and how to live independently. I also assist the staff in writing follow up questions, as well as working on other projects.

As an Outreach Advocate for People First Wisconsin, I am facilitating meetings, reaching out to organizations for our Advocacy Information Discussion (A.I.D.) meetings, taking notes during our collaborative meetings, working on video projects, and assisting with the organization’s website.

My duties as a National Council of Self Advocates Officer deal with public policy at the national level. I work on documents about public policy, make recommendations, and serve on the Technology Coalition. I have been advocating for the public policy documents to be translated into plain language or accompanied by visual aids to make them more accessible to people who would be unable to understand the policies in their current form.

My main goal in working with these organizations is to help people with intellectual and developmental disabilities to learn what their rights are and how to advocate for what they need, so they can build a good life for themselves just like I have!

Want to read more stories like this? Visit thearc.org/stories