We’re Family Caregivers of People With Disabilities & Here’s What We Want You to Know

/in , /by The Arc

They’re cheerleaders and crisis managers, nurses and advocates, therapists and service coordinators. They’re not just family members—they’re lifelines. Family caregivers are the backbone of care for people with intellectual and developmental disabilities (IDD), and their stories often go untold.

This November, for National Family Caregivers Month, we’re spotlighting seven individuals caring for their loved ones with IDD. Their insights challenge how our society views disability, family, and community.

The Arc’s 2023 Family and Individual Needs for Disability Supports (FINDS) survey highlights the need for better support systems for caregivers and their loved ones:

  • Over 50% report very high or extreme stress levels
  • 90% have seen their careers impacted
  • More than 4 in 5 have had to provide increased support

But numbers only tell part of the story. In this blog, family caregivers of people with IDD invite us into their worlds—where challenges and triumphs coexist and where love drives everything.

The Rewards & Challenges of Caregiving

Caregivers open up about the unexpected joys and daily hurdles they face.

Debbi Harris posing with her son Josh.

Debbi and Josh

Debbi Harris, mother to Josh (31) with complex medical needs: “It’s captivating to watch how Joshua navigates the complex world around him with what we consider to be so many limitations. But he has learned to use what he has in the best way he can to communicate, to gather information, to relate pain or contentment or frustration—and he’s proud of it. He has been through more medically than most people will ever experience—yet he comes back undiminished. The challenging aspect of being a parent or caregiver of a person with IDD is how the rest of the world perceives Josh. They limit his humanity and do not invest the time it takes to get to know him as the unique human that he is.”

A mother holds her young son and they are both smiling. The background is pure white with bouquets of flowers.

Dena and Eli

Dena Drabek, mother to Eli (6) with a congenital heart defect: “Eli has undergone three open-heart surgeries, seven cardiac catheterization procedures, and one round of ECMO life support. Watching your child endure so much from the very beginning takes a major emotional toll as a parent. On the flip side, we have a bond unlike most because of what we have been through together. This path has also encouraged us to celebrate all of life’s little moments and be grateful for every opportunity along the way.”

Ray Hemachandra, father to Nicholas (24) with autism and intellectual disability: “Being a caregiver for someone with intellectual and developmental disabilities is no different from being a caregiver for anyone else. You work to meet the individual’s needs; honor their strengths, their uniqueness, and their beauty; and appreciate every day and every moment spent together. You ask for help when you need it, too. A challenge is asking for help in a society and culture that see lesser value in disability and in disabled lives. A challenge is navigating and overcoming a scarcity-based public support system that constantly, relentlessly requires your loved one’s deficits be documented and emphasized.”

 

What Caregivers Want You to Know

Caregivers share candid truths about their lives and the support they need.

An older woman sits next to her sister, who has disabilities. They are looking at each other and smiling.

Patricia and Barbara

Barbara Davis, sister to Patricia (70) with intellectual and physical disabilities: “Better funding is needed but is a low priority in state and federal budgets. Families caring for someone with IDD are just like other families — they want each member of their family to be safe and healthy and to have the opportunity to reach their fullest potential.”

Em Braman, mother to Eden (17) with Down Syndrome & OCD: “The needs of the person you are caring for always come first so you may cancel or ask to reschedule get-togethers frequently,” she shares. “This is not due to not wanting to get together with the other person, it is because my loved one comes first. Our lives just look different and just because it looks different does not mean it is bad or less meaningful. My family enjoys life and enjoys living life together.”

Two women posing together for a selfie, smiling.

Jamie and Sam

Jamie Mistretta, sister to Sam (32) with intellectual disability and autism: “When a support service is unavailable, this limits my sister just as much as it limits me and my family. Her support services are what give her access to her everyday life. When a sibling or other family caregiver is sick or otherwise unavailable, our loved one still needs and deserves support.”

Mariela Azarpira, mother to Samir (22) with intellectual disability, hydrocephalus, and apraxia: “I want to tell people that it is important to fight for them, advocate for them, speak for them, include them, don’t let them give up on them, and don’t let them label them,” she asserts. “People with disabilities are perfect the way they are, so don’t outcast them and don’t allow anyone to do it. They matter too.”

Debbi Harris: “Many of our loved ones require attention 24/7 and staffing that care is a national crisis at this time. It can be exhausting. Caregivers experience chronic illnesses related to stress much more widely than others. I have chronic migraines and other stress-related health conditions. I try to write, or play the flute, or read, but I cannot focus long, and I am needed all of the time. I often feel lonely and isolated. I have my immediate family around me but find myself craving relationships I see others experiencing on social media. Even if I had the opportunity, though, I am usually exhausted and overwhelmed. I don’t have the capacity to participate socially in a normal way, and I don’t fit in. People are afraid I will talk about my son. They think their problems will seem too small or superficial, so they avoid me because they still do need to vent, as we all do. And, the aspects of caregiving I need to talk about, there is no one to listen.”

How Caregiving Shifts Worldviews

Caregivers reveal how their experiences have reshaped their outlook on life.

A woman and her daughter stand together outside, smiling.

Eden and Em

Em Braman: “As my child gets older, I see accessibility as a much larger issue than when she was younger. It frustrates me that while she can physically access places, there are minimal accommodations to assist her in accessing the understanding needed in those locations. For example, a museum without plain language guides for the displays or a listening session where materials are not sent out ahead of time for her to read and reread for understanding or when a medical office will not let her come in ahead of time for a preview of the office to calm her anxiety.”

A mom and her son with disabilities standing together in a swimming pool, smiling.

Mariela and Samir

Mariela Azarpira: “I am a mama bear 24/7. I am in contact with his program and aide every day asking questions like, ‘How was his day? What else do we need to do for him?’ It’s important to have clear communication with each person he is involved with daily. I want him to thrive and make sure everyone is on the same page regarding my son.”

Ray Hemachandra: “For parents of children with disabilities, the responsibility for two lives carries across the lifespan—not just caring about that person’s life, but full responsibility for the care of that life. For example, the normal fear around losing your job, getting ill, or dying is much more about what happens to your child, including your adult child, if and when that happens. Who is going to care for your child? Who is going to love your child? I wouldn’t trade my son for anything or anyone in the world. But I carry all that with me every day.”

What People Get Wrong

Caregivers set the record straight on common misunderstandings about their lives and loved ones.

Dena Drabek: “I often sense that others feel pity for our situation. The commitment I have to my son is not about what I have to give up. It’s about investing in him, nurturing his potential, and helping him discover his own unique gifts so that he can share them with the rest of the world.”

A dad and his son stand together in front of hay bales. They are holding hands and wearing t-shirts that say, "Disabality Rights are Human Rights."

Nicholas and Ray

Barbara Davis: “There sometimes is the assumption that acting as my sibling’s caregiver is only a burden. It can be difficult, but I love my sibling. Being involved in her care is extremely rewarding.”

Ray Hemachandra: “My son isn’t a burden. He’s a blessing. When he is supported appropriately for his needs, he can contribute just as much to his family, to his community, and to our world as anyone else. He wants to know you and be your friend.”

Jamie Mistretta: “I am often asked, ‘Do you think your life would be different if your sister didn’t have a disability?’ I cannot even imagine a life where my sister doesn’t have a disability. My sister’s disability is a large part of who she is; it is a large part of her character. Disability or not, my sister will still be my maid of honor at my wedding someday. I love her for everything she is and everything she is not.”

This National Family Caregivers Month, let’s do more than recognize these hidden heroes. Let’s listen to them, support them, and work towards a world that values their essential role. Their stories show us what unconditional love and true family mean.

A young, Black man with Down syndrome stands in front of a fabric backdrop. He is hold a microphone as if he is ready to sing.

An All-Too-Common Story of Untapped Potential

/in /by The Arc

A young, Black man with Down syndrome stands in front of a fabric backdrop. He is hold a microphone as if he is ready to sing.Marcus Stewart’s smile lights up the room as he talks about his dreams and his latest TikTok dance moves. At 23, the young man from Waldorf, MD aspires to be a pastor or a DJ, and he loves cleaning. He also wants to make enough money to get his own apartment. But Marcus, who has Down syndrome, faces an uphill battle in achieving his goals—particularly because he can’t find paid employment.

“One big misconception is that I am not able to follow directions, learn, or be employable,” Marcus says. His words cut to the heart of the challenges faced by many in the intellectual and developmental disabilities (IDD) community.

The statistics paint a stark picture. Working-aged people with disabilities have significantly lower employment rates—around half the rates of their counterparts without disabilities. When considering people of all ages, the gap widens further. In 2023, people with disabilities were three times less likely to be employed.

These numbers don’t reflect Marcus’s capabilities or work ethic. Through his workplace readiness program, he has volunteered in a diverse range of roles that showcase his adaptability and willingness to learn. He’s stocked shelves at Big Lots, sorted clothes at a thrift store, assisted with administrative tasks at a church, performed housekeeping duties at a hotel, tackled landscaping work, carried out janitorial duties at an assisted living facility and public schools, and helped with food prep at Texas Roadhouse.

“I take care of myself and protect myself and my family,” Marcus asserts. “I show up to work on time, I’m polite and kind, and I’m focused on my work.” He’s dedicated to each role he takes on, yet he can’t get past the biases and discrimination of hiring managers and AI hiring tools.

Marcus has valuable skills and a lot to offer to any workplace. He excelled in school and, as he shares, “I loved math and reading.” He was also active in sports, participating in track, tennis, and bocce. Marcus finished school at 18, graduating on time with his class, and has been in workforce readiness programs ever since.

A young Black man with Down syndrome wears a light blue button up. He is standing with his arm around his mom, who is wearing a hot pink jacket. They are both smiling.Marcus’s mother, Tawana, has been his fierce advocate from day one. “When he was first diagnosed, his first geneticist told me that he’s not going to amount to much. But I said my son will get every opportunity that’s available,” she recalls. “I made myself present in workshops and other groups of parents of children with Down syndrome. I signed him up for sports. I showed up and was very vocal.” She is frustrated by the lack of opportunities for Marcus in adulthood. “Give him a chance,” she pleads. “He gets up every day without an alarm, makes his own meals, never missed a day of school, takes great care of his nephew and our two dogs. He’s more responsible than most people I know, and he’s capable of so much.” Tawana tears up and Marcus puts his arm around her shoulders.

Her message to employers is clear: “Show him what to do and give him a chance to learn.” She adds, “The value in investing in this community is incredible, it makes the company a better place for everybody. More exposure helps educate people and create more acceptance of people with disabilities.”

Despite his employment challenges, Marcus maintains a rich social life. Beyond his TikTok presence, he enjoys spending time with friends. “My friends are nice to me and we do fun things like play Uno, go out to eat, go bowling, and go to the movies,” he says. In his free time, he likes to “relax, watch P Valley and Power, play football and basketball, and take care of my mom and my big sister.”

Tawana urges other parents of children with disabilities: “Seek out resources that are available and most importantly advocate for your child. Advocacy and education are two things I’ve been doing since he’s been born. You have to advocate—no one else is going to do it. The best cheerleaders are the family.”

A young, Black man with Down syndrome wears a black short sleeve polo shirt and stands outside of a house. He is wearing glasses and has a serious look on his face.As we celebrate National Disability Employment Awareness Month and Down Syndrome Awareness Month, Marcus’s story is a powerful reminder of the untapped potential within the IDD community. His resilience, skills, and can-do attitude, coupled with his family’s unwavering support, show what’s possible for people with disabilities.

“I’m smart, I’m strong, I’m thoughtful and respectful. I love my family,” Marcus says, summing up his character in a few words. “I want to work so I can be independent and get my own apartment.” His dream is what we all wish for—autonomy, respect, and the opportunity to contribute meaningfully to society.

Marcus Stewart is ready to show the world what he can do. Are we ready to give him—and countless others like him—that chance?

Orange graphic that says "The only r-word we know is respect."

The R-Word: Why Language Matters and How We Can Do Better

/in /by Jackie Dilworth

Have you ever caught yourself or someone else casually using the R-word? You know the one—that outdated term that’s somehow still in our vocabulary. It might seem harmless, but it’s far from it. The R-word is loaded with hurt, discrimination, and a painful history. Here’s why it’s time we ditched it for good.

A Word With a Painful Past

Let’s rewind to 1961. “Mental retardation” made its debut as a neutral medical term for people with intellectual disabilities. But it quickly became a cruel insult, carrying the weight of discrimination and prejudice.

The early to mid-1900s were a dark time for people with intellectual disabilities. They faced forced sterilization, institutionalization in inhumane conditions, and were often denied basic rights and dignity. Society viewed them as burdens to be hidden away, not as valuable members of our communities.

We’ve made some progress—like Rosa’s Law in 2010 replacing “mental retardation” in federal language with “intellectual disability”. It was a step in the right direction, but the R-word stubbornly lingers in our vocabulary and even in some state laws.

At The Arc, when people with disabilities speak up about language that hurts them, we listen and we change. Our name and terminology have evolved throughout our history because the very people we serve tell us what respect looks like. The Arc is not an acronym. The Arc stands for and with people with disabilities and their families, over the course of their lifetimes. And just as an arc is dynamic, so too is our commitment to adapting our language. When someone tells us a word hurts, we change. It’s that simple, and that important.

More Than Just a Word

Make no mistake: The R-word is hate speech. It’s a slur against people with intellectual disabilities. But somehow, it’s still sneaking its way into everyday conversation, social media posts, and even hit TV shows. It’s become so normalized that many people, especially younger folks, don’t even blink an eye when they hear it.

This is deeply troubling and harmful. When someone uses the R-word as an insult or joke, they’re equating intellectual disability with something negative or laughable. It’s not just offensive—it’s dehumanizing. Terms like “idiot” and “moron” also have roots in demeaning people with disabilities. These words cause real pain and perpetuate harmful stereotypes. They’re not cool, not right, and definitely not funny.

The Ripple Effect

Words have power. They shape how we see the world and the people in it. When we casually use terms like the R-word, we’re not just being insensitive—we’re actively contributing to a culture that excludes and discriminates against people with intellectual disabilities.

Think about it. If you constantly heard a core part of your identity being used as shorthand for “stupid” or “worthless,” how would you feel? It’s dehumanizing. The R-word is a constant reminder of the discrimination and challenges people with disabilities face every day. From employment discrimination to healthcare disparities, its use reinforces a system that often fails to see the humanity in people with intellectual disabilities.

The Comeback Nobody Asked For

After years of progress, the R-word is making a comeback, especially online and in pop culture. It’s like watching history repeat itself in real-time. It undermines years of advocacy and reopens wounds for those who’ve fought hard for respect and inclusion.

People with disabilities have made it clear: this word is hurtful and unacceptable. It’s not “just a joke” or “no big deal.” The R-word serves as a stark reminder that despite progress, discrimination and mistreatment persist. That’s why we have urgent work to do to create a truly inclusive society.

The only r-word we know is respect.

So, What Can We Do About It?

  1. Check yourself: We all have biases and bad habits. Take a moment to really think about the words you use and what they might mean to others.
  2. Speak up (kindly): If you hear someone use the R-word, don’t just cringe silently. Speak up! But remember, the goal is education, not humiliation. A simple, “Hey, did you know that word can be really hurtful?” can go a long way.
  3. Spread the word to end the word: Share this blog post with friends and family. Sometimes, all it takes is one person to start a ripple effect of change.
  4. Celebrate diversity: Instead of focusing on limitations, let’s talk about the amazing contributions people with intellectual disabilities make to our communities every day.
  5. Keep learning: The conversation around disability and language is always evolving. Stay curious and open to learning more.

Remember, changing the way we talk isn’t about following trends. It’s about fostering a society where every person is treated with dignity and respect. It’s about recognizing the inherent worth of everyone. At The Arc, the only R-word we should know is respect. And that’s something worth talking about—and acting on—every single day.

A diverse classroom with a teacher sitting on the floor next to two students, who are looking at a workbook.

The Ultimate Back-To-School Guide for Families of Children With Disabilities

/in /by The Arc

The excitement of a new school year is in the air! For parents of children with disabilities, this time brings unique challenges and opportunities. At The Arc, we know that proper preparation can make all the difference in your child’s growth and success. Here are some practical tips to help you and your child start the school year off right and carry that momentum throughout the year.

  1. Have an open chat with your child about the upcoming year. What are they excited about? What’s making them nervous? Use this conversation to set clear expectations. You can even create a visual calendar together, marking important dates and milestones.
  2. Gradually ease back into the routine. Establish a consistent before and after-school routine that supports your child’s needs, like a calm morning routine, a dedicated homework space, or bedtime wind-down ritual. Keep your weekend plans light early in the school year to give your child time to relax.
  3. Give your child’s Individualized Education Program (IEP) a thorough review. Any changes your child has experienced over the summer or since the last IEP? Any assistive technologies that could help? Don’t hesitate to request an IEP meeting before school starts if needed. Keep a journal or digital record of your child’s progress, challenges, and successes throughout the year—it could be invaluable for future IEP meetings and tracking growth over time.
  4. Connect with your child’s teachers and service providers before school starts. Share your child’s strengths, interests, and hopes for the year. Collaborate on a communication plan that works for everyone. If your child is transitioning to a new school, start planning early. Work with the current and future schools to ensure a smooth transition and take your child on a school tour to familiarize them with their new environment. If your child is attending a before or after care program, establish a relationship with those staff, as well.
  5. Help your child develop self-advocacy. Teach them developmentally appropriate ways to express their needs and preferences at school, such as asking for a break when overwhelmed or requesting clarification on instructions.
  6. The first few weeks might be bumpy as everyone settles in. Give your child (and their educators) time to find their rhythm. Keep a close eye on how things are progressing. If you notice issues, don’t hesitate to speak up. Open and respectful communication can help address challenges early and bigger problems later.
  7. Recognize and celebrate your child’s efforts and achievements. This positive reinforcement can boost confidence and motivation throughout the school year.
  8. Build a support network for your child and yourself. Social connections and the sharing of experiences, tips, and resources can be incredibly valuable for your family. Your state’s DD Council, local chapter of The Arc, and inclusive extracurricular activities can help open doors to other families of children with disabilities.
  9. Feeling unsure about your child’s services or supports? The Arc@School is your go-to resource for understanding your rights and finding help when you need it. Knowledge is power—empower yourself to ensure your child gets the education they deserve.

Remember, your well-being matters too. Taking time for yourself, whether it’s a quiet moment with a book or a chat with a friend, can help you stay energized and focused as you support your child’s educational journey.

You’re not alone in this—we’re here to help every step of the way. Let’s make this school year a great one!

A person wearing an orange jumpsuit behind handcuffed from behind.

Understanding the Fight to Protect People With Intellectual Disability From Execution

/in /by The Arc

The Arc of the United States, along with our partners, recently filed an amicus brief in a critical case before the Texas Court of Criminal Appeals, Ex Parte Blaine Milam. This case highlights an ongoing issue in our criminal justice system: the unconstitutional execution of people with intellectual disability (ID).

Here’s what you need to know about this important fight for justice.

The Background

In 2002, the U.S. Supreme Court ruled in Atkins v. Virginia that executing people with ID violates the Eighth Amendment’s ban on cruel and unusual punishment. The Arc played a crucial role in this landmark decision, with our amicus brief cited by the Justices in support of their ruling. In Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts using clinical standards in their analysis. In Moore v. Texas (2017 and 2019), the Court strengthened this precedent by emphasizing the need to rely on well-established scientific standards in making ID determinations in death penalty cases. The Arc filed amicus briefs in Atkins, Hall, and Moore to educate the Court on the clinical diagnosis of ID and ensure that people with ID are protected from the death penalty.

Despite these decisions, courts around the country too often continue to rely on stereotypes rather than scientific standards when determining ID in death penalty cases. This results in wrongful death sentences and executions. At the same time, people with ID are overrepresented at all stages of the criminal justice system, including being arrested, charged with a crime, and serving longer prison sentences once convicted than people without disabilities.

The Current Case

The case in Texas involves Blaine Milam, a death row inmate with intellectual disability. Mr. Milam was only 20 years old when he received his sentence and was scheduled to be executed in early 2019.  Following the Supreme Court’s decision in Moore v. Texas, the Texas Court of Criminal Appeals suspended his execution to determine if he met the definition of ID. The state’s initial expert concluded that Mr. Milam met the standard for an ID diagnosis, but the state later retained a new expert who disagreed. Despite Mr. Milam’s lawyers presenting reports from four medical experts on clinical errors in the evaluation done by the state’s new expert, that opinion was adopted, and the trial court decided to move forward with Mr. Milam’s execution. He is currently on death row.

Our amicus brief urges the court to rely on well-established clinical standards and Supreme Court precedent when determining ID, rather than outdated stereotypes.

Why This Matters

  1. Fair Treatment: People with ID are at a higher risk of wrongful convictions and death sentences. They may be more likely to falsely confess to a crime, struggle to understand their rights, and have difficulty working with their lawyers to prepare their own defense.
  2. Life or Death Stakes: In capital cases, an accurate determination of ID can literally mean life or death.
  3. Use of Clinical Standards: Under Atkins, states are constitutionally required to ensure that people with ID are not sentenced to death nor executed. Despite Supreme Court precedent, some states continue to rely on unscientific standards for determining and defining intellectual disability, leading to wrongful executions. While this case pertains to the death penalty, it’s critical that court decisions that impact the lives of people with disabilities are properly informed and considered and not relying on stereotypes and misinformation.

The Arc has deep sympathy for the family and friends of victims in this case and supports appropriate punishment of all responsible parties. However, it is critical that courts utilize clinical standards and abide by the Constitution. In Mr. Milam’s case, the State’s latter expert did not rely on clinical standards for diagnosing ID.

The Arc’s Position

People with intellectual and developmental disabilities (IDD) must receive justice in our criminal justice system. We advocate so that:

  • All criminal justice personnel are knowledgeable and trained about IDD.
  • People with IDD have access to necessary supports, accommodations, treatment, and education throughout legal proceedings.
  • People with ID continue to be exempt from the death penalty.
  • States use accurate, scientific procedures to determine ID in capital cases.

Learn more in The Arc’s position statement on criminal justice.

Our Impact

The Arc has been at the forefront of this fight for decades. Since the Atkins decision in 2002, we’ve been actively involved in fighting for the rights of death row inmates with intellectual disability in federal and state courts across the country. We’ve filed numerous amicus briefs, appealed to lawmakers with clemency petitions, and continue to advocate more broadly for the rights of people with IDD in the criminal justice system.

The bottom line is that people’s lives will continue to be on the line if well-established clinical standards are not widely used to diagnose intellectual disability in our criminal justice system. We will continue our advocacy for justice for all people with IDD.

Father with a visible disability smiles outside with his family on fathers day.

A Father’s Love Knows No Limits

/in , /by The Arc

A man with disabilities is in a wheelchair. Next to him are his wife and young adult children. They are standing outside and smiling.This Father’s Day, we’re celebrating Mike, a dad whose unconditional love and devotion are redefining society’s views on parenthood. Born with cerebral palsy, Mike has navigated life from a wheelchair, facing prejudices that often wrongly question the ability of those with disabilities to raise children.

Mike is the proud dad to four children, ages 16, 14, 12, and 10. “I always had a desire to be married and have four children,” Mike shares. That dream was nearly derailed by a devastating miscarriage early in his marriage to wife Amanda. “We wondered if we were ever going to be parents again. Then, 11 months later, it happened! My wife became pregnant with our son. We were beyond excited, but scared. On our 3rd wedding anniversary, Titus was born.” Over the next seven years, they welcomed another son and two daughters into their loving family. For Mike, fatherhood has been the ultimate blessing and responsibility. “The best part is having your child look at you with a big smile and say, ‘I love you,'” he beams. He cherishes witnessing each childhood milestone, like their first bike ride without training wheels. Parenthood has taught him that it’s “the most rewarding and challenging responsibility God will give you.”

As a dad with a disability, Mike has pioneered unique parenting approaches to nurture his kids’ development. “I am unable to physically model many things, so I have to be very thorough with instructions,” he explains. He’s also had to adapt to a largely inaccessible world, amplifying creative problem-solving and finding “unconventional ways” to impart life skills.

Adaptations like an integrated home intercom system have enhanced communication across their household. His inability to drive often causes logistical hurdles in getting his busy family where they need to be. “Sometimes this limits how many activities our children can be involved in,” Mike adds.

His disability has no impact on his ability to empower his children’s pursuit of interests and passions, from sports to church activities. He also teaches life skills and moral values to youth as a deacon and youth counselor at his church and a coach for Junior Church. His ultimate advice to other parents with disabilities? “God chose you to raise this child – you can do it! Keep working at it and don’t give up.” His oldest is already planning for his future, with his sights set on graphics design or counseling.

Of course, busting stigmas has been part of the journey, too. “People assume because we have a disability, we cannot be parents,” Mike shares. He’s not alone—many people with disabilities struggle with the perception that they are or would be inadequate parents. But Mike and other parents with disabilities know that their kids benefit immensely from the experience, including learning resilience, innovation, self-advocacy, and compassion for others.

Mike’s fatherhood story reminds us that a disabled parent’s devotion and competence knows no limits. This Father’s Day, we honor dads with disabilities and those who want to become parents—because people with disabilities have the same dreams as everyone else. As Mike puts it, “Our approach may be different, but the desire is the same.”

 

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

/in /by The Arc

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 (ADA), landmark legislation that broke down barriers to inclusion in society.

People with disabilities deserve to live full, self-determined lives, just like everyone else. Yet discrimination persists for the 1 in 4 U.S. adults living with a disability. That’s why we spotlight inspiring stories in July and beyond that show what’s possible with inclusion.

The History of Disability Pride Month

Disability Pride Month happens every July to mark the ADA’s anniversary, which was passed on July 26, 1990. The first celebration was a Disability Pride Day that took place in Boston in 1990. Chicago hosted the first Disability Pride Parade in 2004. Now there are events nationwide empowering people with disabilities to take pride in who they are. Here’s more about the history of Disability Pride Month and the story behind the flag.

2024 Theme: “We Want a Life Like Yours”

This theme comes from The Arc’s National Council of Self-Advocates. It reflects the disability community’s dreams for life experiences that they are too often denied. All month, we’ll share diverse stories of people with disabilities thriving as students, employees, leaders, engaged members of their communities and families, and more given a chance.

Learn About the Disability Experience

Share Your Disability Story Using #DisabilityPride and #DisablityPrideMonth

What are you proud of? What do you want people without disabilities to know? Share your videos, pictures, or written answers on social media using hashtags #DisabilityPride and #DisabilityPrideMonth. We want as many people to join the conversation as possible! Join The Arc’s celebration by following us on Instagram, LinkedIn, Facebook, and X/Twitter.

Take Action

  • Reach Out to Your Elected Officials: Educate your elected officials about policies that harm or 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 disabilities.

Teach Your Kids to Acknowledge and Include Disabled People

Help foster inclusion for future generations of people with disabilities. Here are age-appropriate tips from TODAY.com, HuffPost, and Cincinnati Children’s.

Attend a Disability Pride Month Event in Your Area

Celebrate your local disability community and show your support! There isn’t a database for Disability Pride Month events (yet!), but here are a few coming up in major cities:

Hire People With Disabilities

Right now, 85% of people with intellectual and developmental disabilities (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. Read these 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!

If you have questions or events/resources we should add to this page, please email Jackie Dilworth at dilworth@thearc.org!

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

/in /by The Arc

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

/in /by The Arc

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

The Arc logo

Texas Voters With Disabilities Share their Stories

/in /by The Arc

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.