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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A family posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.

Spotlighting The Arc’s Changemakers: Debbi Harris, Vice President of the Board

If anyone embodies the fierce, compassionate spirit of advocacy at the heart of The Arc, it’s Debbi Harris, MA, MS, the 2023 Vice President of our national Board of Directors. For over 25 years, Debbi has fought tirelessly to shape systems that fully include people with disabilities and complex medical needs—and it all starts with Josh.

A baby in a small tub. There is a piece of gauze taped to his chest.Debbi’s son Josh was born eight weeks early with a grade four brain hemorrhage. As she shares, “He was one of the sickest babies in the neonatal intensive care unit. It started our roller coaster of a journey of having a child with complex medical needs and disabilities.”

Securing reliable home nursing supports has always been a struggle. When he was an infant, there was a constant rotation of providers coming to her door, many of whom had limited training.

“It was really scary… Josh was harmed because people were coming in who weren’t well-oriented or trained to care for him. At just 18 months old, Josh was hospitalized three times because of this.”

Debbi and her husband Victor also struggled with their careers while managing Josh’s needs and raising their two other children. Victor was often called away for active duty with the military. Debbi worked full time in a traditional office setting, often working into the night to meet her deadlines and hold onto their health insurance. “That insurance was what was providing Josh’s life-sustaining medical care. But because of the hospitalizations, I gave up my career to stay home and care for him when he was two years old.”

A family, parents and three sons, posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.Out of crisis came purpose. Debbi soon immersed her family in The Arc’s chapter support systems, connecting her sons to sibling workshops and herself to a parent networking group. “We still count on those relationships for support today,” added Debbi.

Not long after, her local chapter of The Arc called on her to testify in support of the Tax Equity and Fiscal Responsibility Act (TEFRA) and better standards for care workers. Years later, when Josh was headed off to school for the first time, Debbi found herself in battle for nursing support. School officials told her that Josh couldn’t go to their school unless she paid for a nurse to accompany him during the school day. “I was so jolted by what they said, and I knew we had a big fight on our hands, so I went to The Arc and they stuck by me,” she recalled. “They looked up precedent cases, got their big-time lawyers involved… and we won.”

Debbi not only secured Josh’s rights to nursing care within the school, but her victory paved the way for other families. Now the school must notify every family whose child needs nursing care that they are entitled to support in school.

Debbi constantly found herself in circles with The Arc, including a fundraiser at the home of a family that had two daughters with disabilities. That led to leadership roles in chapters of The Arc—from serving on the Board of The Arc of Dakota County to The Arc of Minnesota and as Board Chair for The Arc of Greater Twin Cities. Debbi has been involved in so many aspects of community advocacy, including working with local and federal legislators. She’s also a published writer illuminating caregiving and equity issues in medical journals.

Debbi’s exceptional contributions earned her the prestigious Betty Hubbard Family Advocacy Award from The Arc of Minnesota in 2013. Her family got to witness her receiving the award. “It meant a lot that they were able to be proud of me in that way,” Debbi shares.

Debbi Harris posing with her son Josh.Once The Arc of the United States got word of Debbi’s powerhouse advocacy, we invited her to apply for the Board. Her proudest volunteer moments have been spearheading the creation of The Arc’s anti-racism position statement and filming a campaign for paid leave in her home. For Debbi, The Arc provides community, kinship, and collective power to drive social change. She points to our strong advocacy at the heart of improving quality-of-life for people with intellectual and developmental disabilities (IDD). And, as she adds, our work is “authentic, grassroots, and rooted in the lived experiences of people with disabilities. We see dignity in all people and we’re willing to make sure that everyone sees that dignity.”

For over 25 years, Debbi’s been on a mission to teach parents how to effectively advocate for their children and to shine a spotlight on the marginalization of people with IDD and the caregiving crisis—and that mission continues today. Debbi is eager to continue leveraging her passion, wisdom, and connections to uplift the disability community nationwide. Her relentless drive reminds us that within all of us lies the power to champion inclusive communities.

There is a man wearing a tan suit with a floral button up shirt underneath. He is smiling.

DSP Spotlight: Lawrence Discusses Hardship Imposed on Direct Care Workforce

There is a man wearing a tan suit with a floral button up shirt underneath. He is smiling.Working with people with disabilities is Lawrence’s long-time passion. He has worked as a direct support professional (DSP) in New York and Texas, both before and after serving in the Army. As a DSP, Lawrence takes pride in the trusted role he has in the lives of people with disabilities. He helps transport people to and from appointments, gives medicine, cooks, cleans, dresses, changes, and feeds people who may not be able to do these things for themselves. He even seeks out specialized training that is needed to support people who have challenging behaviors that may result in injury to themselves and others.

For years, the DSP field has been undervalued and underfunded. For Lawrence, this comes from a lack of recognition and social awareness.

“It is important for people to recognize the skills, training, and importance of our profession and how comparable it is to jobs with similar requirements,” says Lawrence. “I have performed in nursing and emergency services roles; I can say these skills easily translate to direct support professionals. However, these other professions receive not only more public credit but also a substantially larger salary… I have served in this profession for 18 years and don’t have the heart to leave. But right now, I am only earning just over minimum wage and having to work 60 hours a week.”

Dedicated direct support professionals do their best every day to care for people with disabilities and seniors. However, due to poor pay, it is hard for many DSPs to support themselves and their families on this below-average wage.

Recently, the crisis impacted a family that Lawrence works with. When the mother could no longer physically care for her teenage son, Lawrence stepped up. In Texas, it can take 6 years, on average, to get Medicaid home and community-based services. During this time, many people with disabilities end up in institutions, like nursing homes, because they can’t get the support they need to live at home. To prevent this from happening, Lawrence offered to house the teenager and care for him in his own home, at his own expense. “I support him out of the very wages I am paid by Medicaid for my work. It is my choice, but I shouldn’t have to do this for the young man to get the help he needs,” says Lawrence.

Being a direct support professional requires many critical skills but is often easily overlooked by those making decisions about Medicaid funding. As a result of this oversight, there are not enough DSPs to help all the people who need care. The low pay scale often means that people are not able to gain proper training or stay long enough in a DSP role to learn all the skills needed for the position.

“It is my prayer that our government works diligently to support the people with disabilities in our communities and their families. It is desperately important that the processes for funding, equipment, placement, and care be streamlined and that we recognize the value and appropriately pay those who work with people in need. It is through this that we will drastically improve the quality of care and quality of life of those with disabilities.”

Four adult sisters standing next to each other and smiling

Spotlighting The Arc’s Changemakers: Laura Kennedy, President of the Board of Directors

When Julia Kennedy was born in 1982, The Arc had already been laying the groundwork for her to thrive.

Laura and Hal Kennedy were parents to two daughters, ages 3 and 4, when Julia arrived. Early on in her infancy, they knew that Julia was experiencing developmental delays. She eventually was diagnosed with profound intellectual disability and autism. Working with their pediatrician, the Kennedys sought out the help they would need to support Julia at every step, and they found their local chapter of The Arc, AHRC New York City.

A young girl is in a classroom setting. She's seated in front of a table; there are cups on the table in many different colors.Julia started attending a pre-school run by United Cerebral Palsy, where they received a flyer for a family event hosted by AHRC New York City. The whole family spent a Saturday afternoon connecting with other parents, siblings, and children with disabilities.

Laura shared: “It was like walking into the extended family that we all needed. It was the beginning of our now 40-year relationship with this incredible community of people.”

As Julia grew, and the Kennedys welcomed a fourth daughter, they began relying on The Arc for help with Julia’s schooling.

“I was learning about Julia’s rights and what environment could help her thrive. The team at AHRC New York City assured me that there was a continuum of services, and at the top, The Arc’s national office had gurus in special education policy fighting for systemic change. And before Julia was born, they had paved the way,” said Laura.

She added: “Very little existed 10 years before Julia arrived on the scene. I think that’s one of the most important things for people to keep in mind—The Arc’s national advocacy impacts people who are young and old, those who are not even born yet.”

The Kennedys were struggling to balance their four busy daughters’ needs. AHRC New York City helped them through respite care. Julia was very uncomfortable traveling, and so as the family took short trips, they gradually learned to trust other caregivers. Julia had invaluable experiences at overnight camp and staying at a respite home for a night or weekend, and Laura and Hal learned how to balance the risk and the opportunity.

“We needed that support to give time and attention to each child. And Julia needed to have different experiences in her life to grow. Between AHRC New York City’s programs, the wonderful staff we’ve worked with over the years, and the families we met through the chapter, we all benefited,” said Laura.

Soon, Laura started taking on leadership roles in her local and state chapters. In 1993, she joined the Board of Directors of AHRC New York City, representing her home borough of Staten Island. Laura was focused on helping the chapter be the go-to organization for families, supporting those recently receiving a disability diagnosis, and making the kind of connections that the Kennedy family had because of The Arc.

“In the mid-1990s, you still had some pediatricians telling families when they received a diagnosis, ‘Don’t take this on, for the sake of the rest of your family.’ Well, The Arc was there for families to show them that there was another way, and my family was living proof of what was possible,” said Laura.

“When I first learned about The Arc, I was drawn to the fact that family members make up the majority of the Board. That has a positive influence on how our chapters impact lives. There are other disability organizations that aren’t structured with that in mind, and so we are unique in our culture.”

As President of AHRC New York City’s Board, Laura worked with statewide advocates over two years to get the Governor to help families in disputes over their child’s special education services. They were successful in reversing the “burden of proof” in special education impartial hearings to place the burden on the school district, rather than on the parents.

In 2004, Laura stepped up to a state-wide position on the Board of Governors of The Arc of New York, which was then called NYSARC. She spearheaded a successful membership campaign that doubled the membership of the organization. Laura started attending The Arc’s dynamic national events—the Disability Policy Seminar, where she lobbied in Congress, and the National Convention, where she made lifelong connections. While serving as NYSARC’s president, in 2017, Laura successfully led the organization to fully brand with The Arc of the US.

Today, Julia is 41 years old, lives 10 minutes from her parents, and enjoys life in the community. She likes her outings for shopping and seeing shows, volunteers with Meals on Wheels, and continuously works on her life skills. Meanwhile, Laura hasn’t stopped leading. On Staten Island, in New York City, and in Albany, Laura stays busy by chairing AHRC New York City’s advocacy committee. She is currently the chapter’s longest serving board member. And as our national Board President, Laura is keenly aware of those that will be impacted by The Arc in the coming years, focusing on the future power of the national federation.

“If not us, who? The Arc is the go-to organization for people across the country. So much of what was there for Julia existed because of The Arc—nationally and locally. We owe it to the next generation to be doing this work, all the time. What The Arc does is people work. It’s the best way to spend my time,” shared Laura. “We have much more work to do!”

Betty Davis wears a blue top and white pants and stands outsie in front of The Arc of Alachua County sign.

DSP Recognition Week: Betty Davis’ Story

People with disabilities want to live in their own communities and make their own choices about their lives, just like everyone else. For millions, direct support professionals (DSPs) like Betty Davis make that independence possible.

Betty Davis stands in a kitchen with a client, assisting her client with medications.Betty has always had the innate ability to create a safe space for disabled people. As a child, she would talk to them in the grocery store, at church, and on the street. At the age of 18, she found herself running a daycare center and was drawn to do more for the disabled children who came through her doors. She enrolled in disability studies at Santa Fe College, which was right across the street from The Arc of Alachua County. Upon graduating, The Arc of Alachua County immediately hired her as a DSP. That was 20 years ago, and Betty has never looked back.

As Betty shares, “I fell in love with my clients. It wasn’t the pay. It wasn’t the management. It was the clients themselves. If you put your heart and soul into this job, you’ll get love and respect back. My clients have loved me so hard through the years.

Being a DSP is rewarding work, but it can also be physically demanding, emotionally draining, and medically complex. Betty works at a group home with four women who have Prader-Willi syndrome, a developmental disability that causes a range of physical symptoms, learning difficulties, and behavioral challenges – most notably, a constant sense of hunger. Her clients need support 24 hours a day. “Every day, I sit down with each of my clients to go over their caloric intake. I assist them with getting bathed. I make and feed them dinner. I help them do their house chores, manage their medications, and go to bed. On special occasions, like birthdays, I take them home to be with their families. Every Friday, we go out to dinner at a different restaurant and go shopping afterward. They love Walmart, Dollar Tree, Roses, Five Below, and Ollies.”

Not only does Betty advocate for her clients, but they also advocate for her. Betty tears up as she recalls how Melinda, a client who recently passed away at the age of 61, went to the CEO of The Arc, Mark Swain, to ask him to meet her and recognize her work. That year, Betty won Employee of the Year. “She wanted to recognize the type of person I was and that I go out of the way to make them happy,” Betty added.

Despite the crucialBetty Davis stands in line with a few of her clients at Walmart role of DSPs, chronic underinvestment in Medicaid’s home and community-based services has led to paltry wages and training, which has created a nationwide shortage of workers. As Betty says, “Spend a day in our shoes. It might seem like what we do is easy, but it’s not. There’s no training, so I had to learn on the job, and there’s not enough staff. Sometimes, I have to work without a break, cover the next shift, or come in on weekends, but I don’t have a problem with that because I want my clients to be happy. Their families tell me all the time that if I wasn’t in their lives, they don’t know what they’d do or where they’d be.”

Luckily, Betty wouldn’t want to work anywhere else. “The Arc is a wonderful place for resources and a wonderful place to work. They are behind me 100% if I want to get more training, and they try to get as many resources as possible to help DSPs out. This is the place to bring your loved one. My clients wouldn’t want to be any other place.”

DSPs like Betty are vital to helping people with disabilities live with dignity and freedom. Help us celebrate them this DSP Recognition Week and beyond.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

For Tyson, Marriage Changed Everything – Including His SSI

By Tyson from North Carolina

Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.

I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.

In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.

In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.

Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.

The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.

I do my best to pay my bills and live the best life I can. But I am trapped in poverty.

I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.

I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.

A couple on their wedding day. They are posed in front of a grassy area with trees around them and are wearing a wedding dress and suit. The bride is holding a bouquet of flowers.

From Friendship to Lifelong Love: Scott and Lauren’s Journey

Finding love is something many of us hope for, including people with disabilities. Lauren and Scott met while they were participating in programming at Favarh (The Arc of Farmington Valley). At first, they forged a strong friendship, but as the years went on, their relationship eventually blossomed into love. Now married and living together independently, Scott and Lauren spoke with us about their journey and what it means to make their own choices in love and life.

How did you meet?

A young couple stands with their arms around each other smiling, in front of a window in a house.

LAUREN: At the age of 21, I was looking for a job and found Favarh. I was nervous and didn’t know who was going to be friends with me, but I met Scott on my first day. It was amazing because that night, I went home and I’m like “Wow, I think I made an actual friend.” When I met him, he stuck by me all the time. He worked with me for two years at Michaels, he and I had a very good friendship. Everyone kind of knew that he and I would end up together. I was coming out of a relationship, and I tried some dating sites. I thought it would be really nice to see what it was like.

SCOTT: I actually talked her out of it.

LAUREN: He told me I shouldn’t be on apps, and said “Let me be the one to be with you.”

SCOTT: I didn’t want anything to happen to her.

LAUREN: I was nervous because I didn’t know what to expect out of him. I had been verbally abused before. But I knew at some point, there’s got to be someone out there who can put me first and for me to rely on.

How did you start dating?

LAUREN: No one asked the other person out, we just did it together. We just wanted to go out and see what it’s like.

When Scott and I became boyfriend and girlfriend, my grandfather passed away. It was really weird timing. For me to have Scott was really special. He was the first one I messaged after I heard the news because I knew I needed my friend to understand what was happening. He came to my grandfather’s memorial service and it was so nice.

My mom and dad were very supportive of us going out and took us places (and still do.) It kind of amazes me now to look back and say wow, this really has happened. He’s been by my side throughout the years. It’s really hard to be away from him.

We got engaged in 2019. He needed my parents’ permission to propose to me. Scott and my dad went out to dinner together, and then Scott and my mom separately.

A couple on their wedding day. They are posed in front of a grassy area with trees around them and are wearing a wedding dress and suit. The bride is holding a bouquet of flowers.

Why was getting married important to you and what does it mean to you? What was the process like?

LAUREN: Just the fact that we’re together. Knowing he’s there for me is a great feeling.

SCOTT: Relying on each other more. Knowing that we’re husband and wife.

LAUREN: Planning our wedding was a long process. It was the hottest day of the year that we got married. He wanted to wear his bathing suit under his wedding suit! It was really hard trying to figure out everything. I have a brother who lives in Denver, and he was a part of the wedding. We had two best men and I had junior bridesmaid and a maid of honor. It was really fun having my hair and makeup done. Everyone in the wedding sat with us at our table. All I wanted was a small wedding, but we ended up inviting a lot of people!

Why is being independent important to you?

LAUREN: It’s important to be in control of what you do.

SCOTT: Our parents don’t come over as much as they used to. We’ve had less staffing, they’ve backed off of helping us. They used to observe and supervise us cooking dinner, they used to check on us a lot more. Now we do our own laundry, plan our days, go to work, and come home. It is awesome to be able to stay up as late as we want. And now [living together], we don’t have to message each other – we don’t have to use our phones as much because we’re right here.

What do you see for your future?

LAUREN: Having kids—someday being parents. I can see us having independent jobs.

SCOTT: Growing old together. I can’t imagine being with anyone else.

A Hispanic man stands in a black graduation cap and gown, smiling and holding a diploma. He is wearing a multi-colored stole over his gown.

Despite Obstacles, Carlos Is Determined To Pursue His Dreams

A Hispanic man stands in a black graduation cap and gown, smiling and holding a diploma. He is wearing a multi-colored stole over his gown.

Carlos is 32 years old, lives in Maryland, and has cerebral palsy.

His life has been filled with obstacles, but despite all that he has faced, he’s remained determined to achieve his dreams.

Carlos was born in Ecuador, where the landscape of disability services was far scarcer, and discrimination far worse. They did not have classes or formal disability supports available. When his mother Maria took him to doctors, she was repeatedly told he would never walk or talk, would spend his whole life stuck in bed, and that “they should just let him die.” Unable to accept this as her son’s fate, Maria and her family left their entire life behind to seek out better and immigrated to the United States when he was four years old.

While the disability service system in the U.S. was a marked improvement, Carlos still faced difficulties growing up—many due to misperceptions and discrimination from those around him.

“I was bullied in school. No one wanted to respect me. They made fun of me, how I walked…how I talked. I had trouble learning to walk and it took me until around 14 years old to walk without wheelchairs, walkers, and other devices. I had to learn English—it was difficult. I didn’t really have any friends and would sit by myself. I was sad. I don’t want that to happen to anyone else—it felt terrible.”

Things continued to be challenging as Carlos graduated and transitioned into college.

“In college, it was the same thing. People did not respect me or help me. Teachers have a lot of students and don’t care. I ended up leaving Salisbury University to finish my associate’s degree at a community college because they did not have the right program or supports for people with special needs. Then I went to Gaucher College and finished in May of 2022. It was so hard for me to do it, but I can do it.”

Carlos is proud to have completed college and entered the real world. But even outside of the classroom, inaccessible public spaces and misperceptions still plague him as he navigates his adult life. He often falls in cities that do not have the access features he needs like ramps, curb cuts, and elevators. People often think he is drunk because of the way he talks and won’t let him into places—even after he tells them he has cerebral palsy—because they don’t know what it is.

“They hear the way I talk, and they think I am stupid, but I’m not. I know what I am doing. I speak two languages and I’m good at math. I am proud of how far I have come in my life. I can walk by myself, I can use the bathroom alone, and I graduated from college. I want people to stop bullying handicapped people like me.”

A family including a mom, dad, and three siblings stands posing together and smiling in formal wear. They are standing on a grassy field with trees in the background.Carlos now works at TDezz Badass Creations as part of the accounting and management department. He likes the job and enjoys helping people. But he dreams of opening his own business or working in Washington, DC. He loves going to the movies and the mall, especially with his girlfriend Naya whom he met in community college. He loves his dogs Lucas and Tyson, his siblings David and Karla, and his parents Maria and Carlos who are the most important people in his life and have been there for him through it all. He visits his relatives back in Ecuador often and is proud of his family.

Despite the challenges he has faced, he still chooses hope every day. He notes that “My biggest fear is that people won’t understand me, but I never give up. A life is nice to live and is beautiful. Life is too meaningful to waste.” Carlos is a resilient and determined man—but the barriers he has encountered, both in his physical environment and the perceptions of those around him, are harmful and limiting. As Carlos emotionally shared, “Everyone will be disabled at some point in their life. Things need to change.”

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A man in a pink button down stands in front of the ocean, smiling with his eyes closed. He is wearing glasses.

Meet Kevin: “Yes, I can do it!”

What do you want people to know about Down syndrome?

I want people to know that just because I have Down syndrome doesn’t mean I can’t live a fun and exciting life. I have a great life because of my Down syndrome. I want people to know that people like me with Down syndrome are fun, we are loving, we love to hug and we can own our own businesses.

Be nice to me and respect me because I am human, not because I have Down syndrome. I just want to be treated like everyone else and given the same chance to do things. Yes, I can do it. I just need a little more time.

What is a time you were upset or frustrated by how someone treated you?

I got frustrated one time when my sister Kate took me grocery shopping. I wanted to shop by myself and she didn’t want to let me. I got upset and frustrated. She then let me shop by myself and I did a great job. I was able to check out by myself too!

What is a time someone believed in you?

I was asked to be a guest bartender two different times. Once at El Buffalo and once at Raw and Refined. My nephew, Tyler, and the bar’s owners believed I would do a good job. I was so happy they believed in me. It made me so happy to see all my friends come out and support me too. I did a great job being a guest bartender and wouldn’t have known I could do it if they didn’t believe in me.

What are you most proud of?

I am most proud of my family. I love all my 5 sisters and 1 brother. I love that we all get along. I am very proud that I graduated from North County High School in 2002 and from Gigi’s prep in 2021. I am proud that I can work at my three jobs and make my own money.

I am proud of my life.

What does a good life look like to you?

I am happy with my life. A good life looks like my life now. I want to spend lots of time with my girlfriend Emma. I want to keep going on family vacations with my 5 sisters and 1 brother. I want to always stay living in my house. I want one day for all my sis and brother to live with me.

I hope one day to get married and have my own family. I would love to have my own business, work out more and get healthy.

A man smiles softly, wearing a black shirt. His head is shaved and he has a short goatee.

I Turn My Suffering Into Art To Tell Others How Far I’ve Come, so They Know They Can Do It Too

By Poet and Speaker Russell Lehmann

A man smiles softly, wearing a black shirt. His head is shaved and he has a short goatee. I grew up in the Seattle area. I wasn’t diagnosed [with autism] until I was 12, even though I struggled from the day I came out of my mother’s womb because we couldn’t find a competent doctor. I was struggling with severe OCD and panic attacks that consumed my life. I was that “weird” kid in the corner of the classroom with his hood on, not making any eye contact, or even speaking. I was completely closed off, a prisoner inside my own body. When I finally got my diagnosis, suddenly I wasn’t just that weird kid anymore, I was the weird autistic kid. A word that, back in 2003, was very misunderstood and oftentimes resulted in either pity or unconscious spite, for my behavior, on face value, made it seem like I was lazy and disinterested in life. If only they could hear my heart’s silent cries for help.

Suffice to say, this diagnosis, although welcomed, made me even more of an outcast when it came to my interactions, and lack thereof, with society—there’s a lot of stigma. I eventually had to drop out of public school due to my struggles which quite rapidly dissolved all bridges to the outside world, and from 12 to 27 I was completely isolated—my mom would bring home my work and take it back to school for me throughout middle school and in high school, I stayed home and took online classes to receive my GED. I missed out on the entirety of my adolescence, teenage years, and transition into an adult. I didn’t know what it was like to have friends or to even be around others outside of my immediate family. Isolation can do strange things to the mind, the repercussions of which I still deal with to this day.

In my early 20s, I began dabbling in poetry, and this art soon became the friend and companion I had always yearned for. To be able to express my pain, frustrations, dread, sadness, and ongoing struggles was extremely liberating, and to create a piece of art, a poem, out of my suffering, well…there’s not much that was, and is, more cathartic and healing.

In my mid-20s, I self-published a book of poetry that was met with much appreciation for the rawness and transparency it portrayed into my lived experience. The book was featured in the LA Times, earned an Honorable Mention at the 2012 NY Book Festival, and won the award for Literary Excellency at the 2013 International Autistic People’s Awards in Vancouver, Canada.

A few years later, I decided to try and take my advocacy efforts to the next level. I was 25, on disability benefits with no job, living with my parents, and hadn’t had friends in almost 14 years. I knew I had a lot to give and not much to lose, so I set my sights on becoming a public speaker to speak up for those who are pushed to the margins of society like me.

Things took off quite rapidly, as I had a natural talent for connecting with others through topics of vulnerability, a positive by-product of spending half my life alone and looking inward into my painful emotions. Some call me a self-advocate, but I’m not doing this for me. I am doing this so that others have it a bit easier. I shed hindsight and insight to generate foresight for others and perform spoken word poetry in my presentations to offer a more dynamic look into the world of autism, mental health, and the suffering of existence, for it is my belief that art would cease to exist it if wasn’t for the universal commonality of human suffering.

I’ve come so far in life that I feel as if I have lived multiple lives. I had so many dreams growing up, but my struggles got in the way and squashed them, along with an insincere societal environment that put the final nail in the coffin of what I had hoped for my future.

In July of 2021, I decided to take a huge risk and move to Los Angeles by myself to start a new chapter of personal and professional growth, without knowing anyone. If there is one thing my seclusion has always brought me, it was time alone with my heart; time I did not, and still do not, take for granted, for the heart knows the way, and I always listen to mine.

I had been speaking full-time for about three years, but I conflated this professional success with having a personal life, and when travels ceased during COVID I realized that while I may have been traveling quite frequently, I was still very much in a bubble, for my only socialization in my personal life was with my mom, the one human who had been by my side since day one. The decision to move to LA by myself and leave my mom’s side, the sole source of safety and support I had ever known, was brutally painful, to say the least. However, discomfort is the impetus behind growth of any kind, and now, for the first time in my entire life of 31 years, I am fully independent, and for the first time in 20 years, I can finally say three words I had always dreamed of saying: “I have friends”. It’s excruciatingly overwhelming at times and emotionally exhausting, but I know I have to encounter the immense growing pains in order to make up for my lack of social experience.

I have an incredible career, but the friction I encounter with society on a daily basis is a lot to cope with. My job requires a lot of travel, and I’ve had numerous meltdowns (mental and emotional breakdowns due to system overload stemming from external stimuli and exacerbated symptoms of OCD and anxiety, all in the midst of an extremely overwhelming scenario) at airports where passersby see a grown man curled into a ball, sobbing, rocking back and forth, and biting his nails. If I looked more disabled, maybe people would be more understanding, but no one would know or think I have autism when I’m walking down the street—so if they see me having a meltdown, they don’t recognize that as autism, and either look upon me as if I am crazy, or don’t look at all and pretend I’m invisible. I am not sure which response is more soul-crushing.

It’s a rough world out there, for during my moments of crisis, where all I need is some simple reassurance and compassion, I have had cops called on me. When I have meltdowns in public, I just look like a scary big grown man, and no one wants to come close to me. I receive no help—and I know a lot of people go through these situations too. Once I was in Dallas on a layover, and I missed my connection. I had a meltdown and was crying. Ten desk agents were right in front of me and not one even looked at me. I even said, “I have a disability, can someone please help me? ” They just continued to ignore me. The trauma that occurs in situations like this deepens a lifelong wound of being cast aside by society.

In situations like that, I need simple human connection. People need more training on emotional awareness—look into my eyes and see that I’m struggling. I know it’s not intentional, it’s from a lack of awareness. I don’t need you to fix anything, I just want support. Just sit next to me and ask if there’s anything you can do. I will most likely say that just asking that question helps.

We run from things we don’t understand because they scare us, for we as humans fear the unknown. Yet, if we can stop and stare back at our fears, instead of turning our back on them, we begin to see that which scares us dissipate like morning fog, revealing behind it a beautiful sunrise.

Travel is picking back up again for my speaking engagements now, and so I embrace the suffering. My experiences with a lack of understanding are frustrating, but I continue to do it because I have a passion inside of me to tell others how far I’ve come, and I want others to know they can do it too.

I gave a TED Talk at UCLA a few months ago, and recently did my first open mic performance. My journey has always been arduous, but now I can say that it has become beautifully arduous, for so many great things are happening for me now. My potential is sky high, and I have had more personal and professional success just one year into being fully independent than I had in my prior 30 years combined. Who knows what I’ll do or where I will go, but I have full faith that this journey will only continue to become more fulfilling. I followed my passion and success found me. If it is one thing I don’t want to regret on my deathbed, it would be not following my heart at any given moment– we have to follow our heart, it truly knows the way! You may go on some beautiful detours and scenic routes, but with patience and gratitude, life will unfold before you.

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Spoken word poem: “Dear Russell”