A head shot of a young woman with Down syndrome, smiling.

Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities

Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2

The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4

Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!

A head shot of a young woman with Down syndrome, smiling.Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.

For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.

Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”

If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.

 

 

 

1 https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html

2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511

3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932938/

Lawrence Sapp swimming in a race. He is wearing a swim cap and goggles.

Paralympic Swimmer Lawrence Sapp: Defying Expectations About IDD

From an early age, Lawrence Sapp found his calling in swimming. His parents enrolled him on a summer swim team at just 5 years old, hoping it would help their son find his voice and a life-saving skill. Little did they know, swimming would become Lawrence’s passion and lead him to incredible heights.Lawrence Sapp swimming in a race. He is wearing a swim cap and goggles.

Lawrence started competitive swimming at age 12 and hasn’t looked back. Now 22, Lawrence is a student and NCAA Division 2 swimmer at the University of Missouri–St. Louis. He’s also a trailblazing Paralympic athlete, shattering stigmas about what’s possible for people with autism and intellectual disabilities. In 2020, Lawrence made history as the first male Paralympic swimmer with autism and an intellectual disability to join the Team USA National A team. At the Tokyo 2020 Paralympic Games, he placed 5th in the 100m butterfly, 12th in the 200m individual medley, and 14th in the 100m backstroke. As he shared, “I was proud that I could represent my country in a sport that I love.” Lawrence will also be competing with Team USA for the 2024 Paris Paralympics in August and already has his sights set on Los Angeles 2028.

The path was not easy at first, as Lawrence struggled to find high-level training tailored for swimmers with intellectual disabilities. So, Lawrence sought out coaches open to learning and adapting alongside him. The tools they developed for Lawrence’s success, like writing out sets on a whiteboard, ended up benefiting many swimmers because accommodations can lift up entire teams, not just individuals with disabilities. The coaches credit Lawrence with helping them cultivate more patience and compassion and becoming better coaches overall.

“I had to learn to be more patient while they figured things out,” Lawrence shared. “I also learned how to speak up when I felt that I wasn’t getting what I needed. My USA Swimming coaches were also very supportive.”

Lawrence Sapp sitting on a bench, wearing a "Team USA" t-shirt and smiling.That perseverance continues to propel Lawrence to chase his dreams, powering him through twice daily swim sessions plus lifting when he’s at school and daily 4:30 am swims during breaks. “I have goals that I want to reach, and I just focus on my goals and what I need to do to achieve those goals,” he says of how he stays focused. His pre-meet routine of eating sandwiches and spaghetti helps him fuel up.

Lawrence and his family standing together, smiling.Beyond the pool, Lawrence hopes his story will shatter misconceptions about people with disabilities and their potential. “They think that we are happy with letting people do things for us and telling us what to do,” he says of societal attitudes toward autism and intellectual disabilities. “They don’t think that we are capable of making decisions for ourselves and can do things independently.” Lawrence also plans to “graduate from college in 2025, get a job doing something I love, and one day have my own home.”

To others with disabilities pursuing big dreams, Lawrence’s message is one of empowerment: “I would tell them not to give up. Talk to people that can help you and don’t let people trick you into doing something else. You can do anything you want to do.”

With an impressive roster of World Championships experience and medals—including 2 golds and 1 silver in butterfly and backstroke events from 2017-2023—it seems there’s no limit to how far Lawrence’s perseverance can take him.

“My dream is to make the Team USA team…and show people what people with autism and intellectual disabilities can do if you support us and include us,” he said. “We are always told what we can’t do but people with disabilities need to be shown what they can do.”

Lawrence is doing just that—and so much more.

A man with WAGR syndrome sits at a table in a restaurant. He is hugging and being hugged by another man and a young boy.

Spotlighting The Arc’s Changemakers: Burt Hudson, Treasurer of the Board of Directors

Burt and John, a man with WAGR syndrome, stand together with their arms around each other.Family is at the heart of Burt Hudson’s connection to The Arc.

Burt’s younger brother John, who he introduces as “my best friend for as long as I’ve been alive,” has an intellectual and developmental disability called WAGR syndrome. His love for John is boundless, but as a teenager, Burt was mad at the world for giving John a more difficult path, including a near-death experience. But John always brought Burt’s life back into focus because he was his rock. As he shares, “I am the man I am today in many ways because of my brother.”

Burt’s life came full circle when he and his wife Kim welcomed their first child, Jack.

Despite genetic testing showing the absence of trisomy during pregnancy, Burt and Kim were surprised to learn that their “beautiful little guy” had Down syndrome at birth. As Burt reflects, “The night Jack was born, I said to my wife, ‘Without my brother in my life, I would have never become the man you would have married.’” Burt and Kim didn’t hesitate about the road ahead because “There is no playbook for anyone… If you love your child as much as you can today, tomorrow will get figured out. And just like my brother, we’ll watch Jack change the world for the better.”

Burt and his newborn son sitting in a reclining chair, sleeping together while a dog looks at the baby.Jack is now 9 years old and—despite a speech delay from childhood apraxia of speech—he is a complex, smart, and kind third grader. He loves riding horses, dancing to Bruno Mars and Maroon 5, drumming, and acting out Muppets movies. He also has a 6-year-old younger brother, James, and “They have been a duo ever since James was born.” Burt recalls a memory from his childhood when he and his brother were wrestling in the ocean, showing John was just another sibling. The same camaraderie is seen between Jack and James.

Burt’s mom has “always strived to make sure John can live an independent life.” That’s why she has long been involved in advocacy efforts with The Arc’s chapters in Georgia, where Burt grew up and John now lives in an inclusive group home not far from his parents and brother. As Burt shares, “he’s very proud to be a man on his own.”

It wasn’t until his adulthood, though, that Burt’s mom asked him to participate in a plane pull fundraiser for her chapter of The Arc. Burt eagerly flew to Georgia to pitch in. He hit it off with the Executive Director, who fatefully connected him to The Arc of Virginia, where he has served on the Board for 13 years and still going strong. After Jack’s birth, he became even more passionate about his role as a volunteer. “In the midst of the exhaustion, I decided I had to do more for The Arc. So, I went on to The Arc of the United States’ website and saw an application for joining the Budget and Finance Committee. Over the years, I got to know several staff and board members and was asked to join the Board.”Two young boys, one with Down syndrome, wear warm, winter jackets, and are sitting together outside.

Burt’s career has also been influenced by John and Jack. He is COO of LeadingAge, a community of service providers for older adults and people with disabilities. “As a compassionate society, we must take care of others. I’ve never known anything different.”

What continues to drive Burt’s involvement in The Arc is gratitude for the progress made for people with disabilities. He shares, “It is gut-wrenching what our society has done to people with disabilities historically, and it’s frightening to ever try to picture my brother or my son living in those kinds of conditions. I don’t know how people started to right those wrongs, but I know The Arc was at the forefront of it. So, I give back to The Arc in any way I can because it’s done so much for people like my brother and my son. The best part is that the people we serve are sitting next to me at the table. The Arc is led by people with disabilities and caregivers, which I find unique and special. I’ve met a lot of people through The Arc and the ones who make the biggest impact on me are those who have disabilities. These are the people who tell me how I can help The Arc. When my son was born and I had my own health challenges, these same people supported me. All these people had the Hudsons’ back and I’ll continue to have theirs.”

A man with WAGR syndrome sits at a table in a restaurant. He is hugging and being hugged by another man and a young boy.Burt wants people with disabilities and their loved ones to know they can always turn to The Arc for guidance. “The Arc is a wonderful resource full of wonderful people, one that generations of families have relied on to find the path they need to be walking.” As Treasurer of our national Board, Burt is heartened to see The Arc remain strong through the decades. “There’s a lack of compassion and a lack of love all around us, and The Arc is the heart of this country. It shows the strength we have when we’re banded together with a common cause and love for each other. The consistent light The Arc has provided gives me comfort and hope that we’ll get through anything.”

Thanks to The Arc and its advocates, it’s easy to imagine a bright future for Jack. Burt shares, “My hope for both my kids is to find the best happy path for their lives. I want Jack to live a full and independent life just like my brother John.”

He sums up, “I volunteer as a thank you to the entire federation of The Arc. I don’t think there’s a way to appropriately thank everyone for what they’ve done for my brother and my son. There’s no way to say thank you enough, but I’ll keep volunteering my time until I figure it out.”

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

A Father’s Love Knows No Limits

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.”

 

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.

Comcast and The Arc Collaborate to Improve Digital Skills and Make Life-Changing Impact for People With Disabilities

Digital access and skills are a critical component of modern life. In 2023, The Arc and Comcast teamed up to help people with intellectual and developmental disabilities (IDD) leverage technology to open the door to new experiences in their communities.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community—and through this partnership, since 2017, more than 3,000 clients have received basic digital skills training.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Meet Kris, a 59-year-old man with cerebral palsy.

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.Kris lives with his sister’s family in his hometown of Greely, Colorado, and has been successfully employed for 40 years, currently working full time at the busiest grocery store in town. He is an avid sports fan—Go Bears!—has a busy social life, and because of his gregarious personality he is a bit of a local celebrity, traveling around town on his e-bike. Kris has become very active in civic service—involved with the Chamber of Commerce, volunteering at local nonprofits, and serving in leadership roles at both The Arc of Weld County and on The Arc’s National Council of Self-Advocates.

To be effective in his new roles, Kris had to better leverage modern technology and communication platforms. He was comfortable with the basic use of his cell phone and his laptop, and The Arc of Weld County provided tech coaching to give him the confidence with the more advanced technology he needed to be successful. Kris learned how to navigate complex websites with multiple drop-down navigation structures and use passwords to access secure portals. His tech coaches showed him how to sync his calendars and email on both devices to stay on top of his busy schedule. He has even mastered accessing virtual meetings. After a long day, his eyes get tired and email can become stressful, so Kris taught himself how to use the read aloud feature to make it easier.

Kris continues to get weekly tech coaching sessions to keep advancing his skills. He is learning to use folders to organize his documents, better managing calendar invites, learning tactics to ensure he is responsive, and understanding how to identify and handle junk or malicious email. Like many of us, passwords and computer updates can still “throw him for a loop” from time to time, but he stays patient, and as he says, “It feels good when you figure something out.”

By advancing his technology skills, Kris has been able to pursue work that he feels is incredibly important. He shares his lived experience as a person with IDD while counseling disability organizations at the local, state, and national level on how to better support people with disabilities. “I know what it feels like to feel like you are not heard. I want to help people be heard.”

Meet Roselyn, a 60-year-old woman with Down syndrome.

Roselyn, a woman with Down syndrome, is standing in front of a house and smiling. She's wearing a colorful blouse and jeans. Her hands are on her hips.Roselyn has lived with her mother and received support from The Arc of Greater Indianapolis since 1981. During the week, Roselyn works at Corteva Agriscience through The Arc of Greater Indianapolis’ employment services. She works as part of a team that assists scientists in preparing seedling trays for growing new plants, hosing down trays when experiments are complete, and keeping the greenhouse labs clean. Roselyn is very proud of her work and the independence she has from earning a paycheck. She recently bought a kitchen table set and used her tax check to buy a new washer and dryer.

However, when her mom had to be moved into a nursing home quite abruptly, Roselyn needed an emergency placement. The Arc of Greater Indianapolis helped move her into a new living environment with staff support. Roselyn enjoys the financial independence that comes with working—for example, she has a standing hair appointment every two weeks for some pampering at the salon. With more activities in the community, Roselyn started wanting to enjoy some alone time without staff having to be with her. This was going to require some tech coaching to do so safely.

Roselyn had used cell phones over the years, but she never really explored the features they offered and would either lose or break them. If she wanted to call family, staff would have to help her. Staff at The Arc of Greater Indianapolis worked with Roselyn regularly for a couple of months as part of these tech coaching sessions. They helped her learn how to call and text family, friends, and staff and how to contact help if she ever feels unsafe. She has learned how to access the internet and use apps like Voice to Text to look things up and connect with friends. Now, she gets time to herself each day. Roselyn gets home from work around 1:30, but her staff don’t arrive until 3:30. She either calls or texts them, though, to let them know that she made it home safely. Then she spends some time searching for videos on dogs and cats (she loves showing these to her staff later) as well as watching her favorite shows online (she especially loves Night Court and Law & Order). If the weather is bad on Sundays, Roselyn even watches church online. When she’s not working or using her phone, she likes doing 5,000-piece puzzles, going shopping, and seeing her Colts or Pacers play.

Through tech coaching, Roselyn has achieved a newfound sense of independence. You never fully appreciate how nice it sometimes is to be alone if you’ve never been able to experience it. Roselyn loves her work, friends, family, and the staff who work with her. However, sometimes it’s wonderful to just spend some time alone.

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “Partnerships, like the one we’re proud to share with The Arc, are at the heart of what drives us each day at Comcast because of the many lives we’re able to help impact. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive initiative to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach tens of millions of people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

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Tayone sits at his desk in his office. There is a computer monitor and keyboard on the desk. He is using the keyboard while looking up and smiling.

Tayone’s Struggle to Find Employers Who See Past His Disability

Tayone sits at his desk in his office. There is a computer monitor and keyboard on the desk. He is using the keyboard while looking up and smiling.Tayone Miller is a full-time Computer Analyst with Charles County Public Schools (CCPS), bringing nearly a decade of experience in developing, managing, and improving information technology. It’s a career he’s always dreamed of. “Technology helps people throughout their lives,” he shares. “I wanted a career that would be everlasting, and Computer Information Systems (CIS) was the right fit for me.”

Tayone was also born with cerebral palsy, which has caused him to have trouble with speech. He brings immense value to his workplace, but he has experienced countless barriers in getting to where he is. In school, he struggled with “people not seeing past my disability, creating stereotypes, and getting various instructional strategies to help me in classes.” After he graduated from Florida Memorial University, where he was recognized as Student of the Year in 2012, Tayone says, “Many of the jobs I have applied for require at least three rounds of interviews. I always had difficulties passing the first stage due to my speech impairment. After having interviews with many prospective employers, I could tell by their responses and body language they were unwilling to hire a person with disabilities. [Because of this] I have not directly disclosed my disability on applications.”

He’s not alone. Research shows that a shockingly low number of employees disclose their disability to their employer, likely for fear of discrimination. It took many rejections, but Tayone found an employer who saw him for his skills, not his disability. “I started working at CCPS as an intern, then I was promoted to a temporary computer analyst, and now I am a full-time computer analyst. I now manage various interns.” Even though he deserves his job and excels at it, he has faced microaggressions, or subtle discrimination, in the workplace. As he notes, “In the past, my co-workers displayed eye-rolling when I spoke or turned away from or avoided me altogether.” But Tayone ignored them because “I did not want to give them control over me. Disability representation in the workplace means that people with disabilities are seen, heard, and respected in their jobs. Furthermore, it promotes inclusion for all. My employer is able to see my strengths and capitalize off of my positive attributes. In the next 5 years, I see myself still working at CCPS as a Senior Computer Analyst.”

He now uses his experience to help those who will come after him. “As a person with a disability, I am keenly aware of the challenges students with disabilities may face when obtaining their education. I am able to advocate for the adequate equipment they need to be successful. Some advice I would give to people with disabilities who are struggling to pursue a career is to be persistent. Never give up on yourself. Build relationships with others in the field to mentor you.”

October is National Disability Employment Awareness Month, we urge you to celebrate the diversity of disability, embrace and support employees like Tayone, and promote equal employment for all.

Read more employment success stories.