Travel opens doors to connection, work, and exploration, offering experiences that can shape lives in meaningful ways. But, for people with spinal cord injuries (SCI), it also comes with questions that most travelers never have to consider: Will my wheelchair be safe on the flight? Will the hotel room actually match the description online? What steps do I need to take to stay healthy on a long trip? These challenges are real, but so are the solutions, shaped by community programs, healthcare guidance, and research projects working toward better systems of accessibility.

Community Impact

Lodging is one of the most common pressure points in travel. A Craig H. Neilsen Foundation grantee partner found that more than 90% of travelers with SCI who used hotels after injury encountered environmental barriers. What stood out most was not the lack of features, but the lack of reliable information. Without clear details about room dimensions, bathroom layouts, or bed heights, travelers often arrived to find spaces that didn’t work for them, only after long hours on the road.

Efforts are underway to change that. A grantee-partner of the Neilsen Foundation developed a framework for hotels to share accurate accessibility details online, including measurements and photos, so guests can make informed choices before booking. The concept is simple, but powerful: when travelers know what to expect, they report feeling not only more confident in booking, but also more welcomed by the property itself.

Changes making a difference for travelers with SCI include:

• Hotels listing accessibility features such as bed height, doorway width, and roll-in shower availability online.
• Communities piloting better accessibility standards for recreation and lodging.

Each of these steps, though incremental, adds up to fewer surprises and more freedom for people who want to keep traveling.

Health Implications

Preparing for travel also means planning for health. A long flight is not only about endurance. For people with SCI, it can raise risks such as pressure sores and circulation issues from sitting upright for long periods, urinary tract infections, or dangerous fatigue. Our grantee partners have emphasized how proactive strategies can make all the difference.

Medication and health management are other key factors. Travelers often need to adapt dosing schedules when crossing time zones or spending long stretches in transit without predictable access to restrooms or refrigeration. Rehabilitation specialists frequently guide people through these adjustments so trips remain safe and sustainable.

These health considerations place an additional burden on individuals with SCI while traveling and are essential for turning a stressful journey into a manageable one. And they remind us that accessible travel is not only about physical space but also about protecting health and energy so that the trip itself can be enjoyed.

Research Effect

While community efforts and healthcare guidance address immediate needs, research is laying the groundwork for broader change. Current grantee work is gathering in-depth accounts from travelers with SCI to create recommendations for airline and airport personnel training. The goal is straightforward: staff who understand the realities of SCI are better prepared to handle equipment, transfers, and emergencies safely.

This work connects directly with wider industry challenges. In 2024, the U.S. Department of Transportation fined a major airline $50 million for mistreating passengers with disabilities and their equipment, the largest disability-related fine in airline history (Los Angeles Times). More recently, proposed federal rules aim to strengthen protections and hold carriers accountable when mobility devices are broken or delayed (Fortune). These developments highlight both the scale of the problem and the urgency of solutions.

Airlines are beginning to respond. Some airlines, such as Delta, have publicly committed to testing new seating designs, distributing evacuation tools, and expanding accessibility advisory groups. Yet even with these advances, gaps remain. The interviews and focus groups underway with travelers with SCI in the U.S. and Canada are designed to close those gaps, producing recommendations that airlines can act on immediately.

Solutions do not always begin with renovations. Often, they start with better training, clearer data, and a commitment to listening.

Looking Ahead

For people with SCI, travel continues to evolve. While barriers remain, change is underway: hotels are sharing clearer accessibility details, healthcare providers are equipping travelers with strategies for safe journeys, and researchers are advancing solutions shaped by the lived expertise of the SCI community. Step by step, these efforts are expanding opportunities and making travel a more seamless, enjoyable experience.

The future of accessible travel is about ensuring that people can make decisions with dignity and confidence, and ultimately about shifting the question from “Will this trip even be possible?” to “Where should I go next?”

Each year, the Craig H. Neilsen Foundation supports organizations working to improve the lives of people with spinal cord injury (SCI). In 2025, the Foundation’s continued commitment to research and education is something we are proud of.  These new grants speak to the core purposes of the Spinal Cord Injury Research on the Translational Spectrum (SCIRTS), SCI Medicine Fellowships (SCIMF), and the Neilsen Scholarship Program (NSP) portfolios, which reflect the values of our Founder and the important work happening across the field of SCI.

Through SCIRTS, more than $9 million in new research funding has been awarded to institutions tackling real-world challenges faced by people with SCI. These projects explore ways to reduce pain, prevent falls, improve bladder function, and restore aspects of sexual health. Several of these grants will support the use of artificial intelligence and computer modeling to better understand how treatments work as well as making care more personalized. Many research teams are also building stronger connections with people with SCI, highlighting the value of including lived experience to help keep the work grounded and relevant.

In healthcare, the SCIMF portfolio continues to underwrite academic centers and hospitals training the next generation of physicians who specialize in SCI medicine. This year, $1.1 million in new grants will support 10 fellows at eight institutions. These doctors-in-training are gaining experience in clinical care as well as outreach and community-based initiatives. Several programs are building innovative partnerships to expand what SCI medicine can look like within and beyond the hospital setting.

The Foundation continues to fund colleges and universities committed to removing financial and accessibility barriers for students with SCI through NSP. A total of $3.4 million in grants was awarded to 13 institutions to support 33 students pursuing a wide range of degrees. While each academic path is unique, many students see their success as part of something larger. As a University of Florida graduate shared, NSP “provided an opportunity for me to be a role model within the community, as an encouragement to current and upcoming students, who aspire to better their lives and realize that it is possible despite any physical or mental limitations.”

While each portfolio focuses on a different area, the connection between them is what strengthens the overall impact. Research generates new knowledge, medical training ensures that knowledge reaches people through care, and educational access helps individuals shape their own future. Together, these efforts create a more informed, responsive, and supportive SCI ecosystem.

The Craig H. Neilsen Foundation is grateful to the organizations and individuals who bring expertise, dedication, and heart to every effort. Their work moves the field forward and makes a lasting impact in the lives of people with SCI. It’s a privilege to support these partners and their progress in 2025 and beyond.

The impact of a spinal cord injury (SCI) reaches far beyond the medical diagnosis. It reshapes a person’s relationship with the most ordinary parts of life, such as getting in and out of bed, getting dressed, or making breakfast. For many, these routines require entirely new strategies, assistance, or tools. What once took seconds might now take minutes. What was once second nature might now require planning and problem solving.

Returning home can be one of the most jarring moments after an injury. A two-story house may no longer be fully accessible, with bedrooms and bathrooms out of reach. A front step becomes a barrier. Even the wheelchair, so often symbolized as a tool of freedom, can initially feel limiting or even unsafe. The challenge of navigating terrain, the difficulty of transportation, or even the fear of being alone can all compound the sense of loss. These physical and emotional limitations affect how a person sees themselves, their role in the world, as well as how they define independence.

But that’s not where the story ends. In the face of these disruptions, individuals with SCI often begin a long and complex process of reimagining their lives. It’s not about returning to who they were before, but about discovering new ways to move forward, shaped by creativity, determination, and the right support.

This is where community-based programs and adaptive tools can play an essential role. Challenged Athletes Foundation worked with a dedicated wheelchair athlete whose injury in 2003 set him on a path toward adaptive sports. Through a Craig H. Neilsen Foundation grant to them, Joey (pictured right) received a custom tennis chair and found new motivation through wheelchair tennis. “I’ve made so many good friends and learned a lot about living with a disability. Sports have helped to improve my overall outlook on life.”

This story is a reminder that identity doesn’t disappear after injury—it evolves. And what may seem like a simple activity to an outside observer, such as playing tennis, going out in nature, or attending an art class, can be a deeply personal act of reclaiming independence for someone with a SCI. From the outside, it may be labeled as an adaptive program or SCI-specific service. But for the person participating, it could simply be their annual trip, their monthly hangout, or the one space they feel completely themselves. These moments aren’t viewed through the lens of diagnosis, they’re just life.

At the Neilsen Foundation, we believe in supporting organizations that provide opportunities that make this kind of transformation possible. Every person, regardless of their ability level, deserves the chance to define what independence looks like and to build a life that reflects who they are, not just what they’ve been through.

The entire family dynamic shifts when a child (no matter their age) acquires a spinal cord injury (SCI). For parents, the experience is often sudden, layered with grief, and filled with uncertainty and many unanswered questions. But it can also reveal new skills, deeper resilience, and a strengthened bond between parent and child.

Alongside navigating the shock of the injury, they may find themselves in unfamiliar medical systems, advocating for care, and managing insurance challenges—all while trying to process what this new reality means for their loved one’s future. Through it all, many parents find strength they didn’t know they had, and find moments of clarity, connection, and hope that help guide the path forward.

This article explores the experiences of parents whose children, whether minors or adults, have sustained SCIs. It highlights how their roles evolve over time and how the SCI community, healthcare professionals, and researchers are working to better support families. Our grantee partners contribute to this effort through innovative community programs, healthcare improvements, and research initiatives that prioritize the physical and mental wellbeing of families alongside individuals with SCI.

Community Support

Parents often serve as primary caregivers, advocates, and emotional anchors after the injury; but they also face their own trauma and a need for support. One of the most meaningful sources of connection can come from a peer network, such as other parents who have navigated similar experiences and can offer guidance, validation, and hope.

At a rehabilitation hospital supported through our Creating Opportunity & Independence portfolio, a newly developed patient and family center offers space for families to gather outside of therapy hours. The center provides a flexible environment to try out adapted games, engage in creative activities, and connect with others. It also serves as a place for recreation therapists to help patients practice skills before returning to community settings.

“The new area will decrease the social isolation many patients with spinal cord injuries often feel and give them a sense of normalcy while interacting with other patients with spinal cord injuries,” shared one team member involved in the program. Designed to support both patients and families, the space also encourages meaningful leisure time during inpatient rehab, helps build confidence with adaptive tools, and reflects the diverse cultural and geographic backgrounds of those served. Plans to include individuals with SCI as mentors add another layer of support, modeling community participation and offering insight from personal experience.

Navigating Healthcare Challenges

Managing the healthcare system after an SCI often centers on the individual, but parents play a critical role in an individual’s recovery and ability to integrate into their new normal. As caregivers, parents help with discharge planning, medications, therapy coordination, and day-to-day personal care. Yet many rehab centers don’t provide enough training or support to help them prepare for this role.

Insights from Neilsen Foundation-supported psychosocial studies highlight the need for better caregiver preparation. Many parents report feeling overwhelmed during their child’s transition home, unsure of how to provide safe physical care, and anxious about handling medical needs or related health issues.

Several practices are being explored that may help caregivers feel more prepared:

• Begin caregiver education and support early in the rehabilitation process
• Offer personalized training and emotional check-ins
• Share practical resources, such as caregiver-specific guides or online tools

Implementing tools that recognize parents not just as family members, but as care partners, can ease stress and support recovery.

Research and Technology

New research is examining how caregiving affects parents’ emotional and physical health over time. One grantee partner studied the experience of parents whose children sustained an SCI, finding frequent feelings of isolation, mental and physical fatigue, as well as limited support at the start of this new role. At the same time, many parents expressed a deepened sense of purpose and connection as they adapted to their new responsibilities.

Other researchers are developing tools and strategies to support caregivers. A grantee partner in Chicago piloted a multi-year support program for caregivers of children with SCI, which included a weekend-long in-person Parent Forum, monthly support calls with a mental health professional, and a follow-up event the next year. One parent reflected, “It’s been something that, honestly, I looked forward [to] because, for me, it’s a relief to be around people who get what I’m going through.” These connections helped caregivers feel more confident and less alone—especially for those who didn’t know anyone else raising a child with an SCI. New telehealth approaches and caregiver apps are also being tested to better serve families in rural areas without easy access to specialists.

This growing body of work reinforces an important message: when parents are supported, the entire care system improves. A more inclusive approach to SCI recovery means addressing the needs of families, not just individuals. When parents are empowered with knowledge and coping skills, families can move forward together. As community programs, healthcare, and researchers continue to learn from and support parents, we are building a more supportive and inclusive path for SCI recovery. This approach recognizes that healing is a shared journey.

“How are you?” It’s such a simple question, one we ask all the time, often without thinking. When I ask, I really do want to hear how my colleagues, friends, and family are doing. Lately, I’ve caught myself hesitating. That question has felt a lot heavier than it used to. Over the past few months, so much has changed. Scientists face drastically reduced funding after dedicating their careers to improving the lives of those living with spinal cord injury (SCI). Nonprofits are being told to avoid words like accessibility, inclusion, and equity. There are changes in tax laws that could mean a significant reduction in philanthropic giving. And, knowing how the disability community will be impacted if Medicaid and Medicare are next on the chopping block, asking how someone feels can seem like it misses the weight of our current reality.

The Neilsen Foundation has spent more than two decades focused on a vision where individuals with SCI live full and productive lives as active participants in their communities. Our grantee partners have always been bold, leading efforts to reduce barriers to care and recovery through research that moves from the lab to the clinic, and we’re proud to support that work. Our SCI Medicine Fellowships ensure we have physicians with the expertise to treat the SCI patient population; and, we support inclusive, community-driven projects that come from nonprofits across the U.S. and Canada. This is who the Craig H. Neilsen Foundation is and who we will continue to be.

Dedication to the Foundation’s mission drives our thinking, and our commitment to supporting the world of SCI is unwavering. At our May Board of Directors meeting, the Foundation approved more than $9.5 million in research grants, support for SCI-medicine specialty training for 10 physicians, and partnerships with 13 colleges and universities by underwriting the education of more than three dozen students. Rest assured—we are not going anywhere. Our grantmaking remains steady and focused.

With so much uncertainty regarding federal funding, there is no quick fix and, although I’d like to tell you we have the perfect answers, we don’t. We may not know what’s coming next, but we’re committed to staying present, listening carefully, initiating new collaborations, and walking alongside our grantee partners through whatever lies ahead. At the same time, we are actively working with colleagues across the country to develop strategies that make the long-term health of the SCI community a priority. Knowing how much more we can achieve as a community, we encourage you to share ideas about how, together, we can create and capitalize on new opportunities.

Our funding for both community programs and scientific research reflects a hope to foster transformative ideas. This culture of supporting creativity, collaboration, and leadership in the SCI field began with our founder, Craig Neilsen. He expanded his vision and grew his business beyond expectations, after he sustained his spinal cord injury. Some may have assumed he’d slow down or retreat, but those who knew him saw something different—a sharper focus and a deeper drive to create a lasting impact. Right now, as a field, a community, and a country built on a diversity of ideas, we may feel a bit shattered. But Craig reminded us that even in moments of upheaval, something new can take shape. Holding onto that belief, we imagine what’s possible and how we move forward together.

To our grantee partners, I remain inspired by your work and dedication to improving the quality of life for so many.

Be well,

Kym Eisner, Executive Director

After a spinal cord injury, there are few environments where someone can express everything they’re feeling—grief, resilience, uncertainty, hope. For many, art and music offer that space. Whether it’s painting with a brush held in the mouth or writing a song that captures a moment too hard to say aloud, creative expression can make room for healing in ways that traditional rehabilitation can’t.

Craig H. Neilsen Foundation grantee partners are creating programs that reflect this truth. A young man from Mary Free Bed Rehabilitation Hospital who once felt withdrawn and disconnected found new motivation through mouth painting. Over time, he began opening up to staff and working more actively toward his therapy goals. “When he was discharged, he described himself as open, kind, and an artist.”

Music brought that same sense of reconnection to another patient, a 55-year-old man with tetraplegia who had always wanted to learn guitar. With the help of his therapist, he adapted chord shapes and focused on building fine motor skills and coordination. One of the most meaningful moments came when he played and sang “The Dance” by Garth Brooks alongside his daughter. This shared favorite became a turning point in both his therapy and personal connection with his daughter. Learning guitar not only supported his physical goals but it also gave him something lasting to carry forward into life beyond the hospital.

Other programs offer different entry points into creative connection. One initiative focused on accessible music technology that has opened new doors for participation. A motion-detecting app allows users to create music through subtle movements, while a retrofitted harmonica-style device offers a tactile option for those who prefer physical interaction. Others integrate songwriting, drumming, or digital composition into peer groups or one-on-one sessions. Whether someone is reconnecting with a longtime passion or discovering a new one, the process allows them the opportunity to direct the pace, the tone, and the story.

This kind of expression matters, especially since navigating changes in self-identity after injury can be complex. Creating art or music isn’t about escaping reality. It’s about finding ways to face it, shape it, and share it on one’s own terms. Participants often describe these experiences not as side projects or distractions, but as essential to how they’re making sense of their lives now.

In the landscape of spinal cord injury, progress is often measured in steps, reps, or milestones. But sometimes, it looks like a song. A painting. A conversation that didn’t seem possible a week before. These programs make space for that kind of growth—the kind that brings someone back to themselves.

Inclusive design is more than adding ramps or meeting accessibility standards—it’s about who gets to make the decisions about accessibility. It ensures that those who experience exclusion, such as people with spinal cord injury (SCI) are actively shaping the spaces, systems, and innovations that impact their lives. True inclusion not only removes barriers but also expands opportunities, creating pathways for greater participation and equity.

The most effective solutions emerge when lived experience leads the way. Our grantee partners demonstrate that true inclusion happens when people with SCI are engaged in decision making, problem solving, and innovation.

While universal design strives to create environments that work for as many people as possible, when inclusivity is embedded in the process from the start, it has a more significant impact. By engaging people with SCI directly in the design process, inclusive design helps refine and enhance universal solutions, ensuring they are meaningful in real-world contexts.

Creating Inclusive Community Spaces

Public spaces, fitness centers, and recreational programs often claim to be accessible, but who defines what that means? A space may have designated accessible parking, but if essential signage lacks braille or audio options, or elevators have controls that require fine motor skills is it truly inclusive?

Some of our grantee partners are working directly with city parks, rehabilitation centers, adaptive sports programs, and other community spaces to ensure accessibility is practical, not just present. This means:

• Involving people with a disability in the design of fitness equipment so it meets different body mechanics and needs.
• Training staff at YMCAs and gyms to support adaptive athletes.
• Redesigning outdoor areas like piers and parks based on input from wheelchair users with SCI—because a pathway is only accessible if it leads somewhere meaningful.
• Including audio wayfinding or braille.

One example of this work is a grantee partner’s project to improve access to Great Lakes fishing by redesigning a public pier with lowered fishing railings, shaded rest areas, and accessible seating options. These changes ensure that everyone can fish comfortably anywhere in the park, rather than being restricted to designated areas. This approach highlights how thoughtful, user-driven design transforms accessibility from a technical or legal requirement into a meaningful experience.

Removing physical barriers is just the start. True inclusion means designing for full engagement, where people aren’t just accommodated but are actively shaping their environments.

Accessibility in Healthcare

Accessibility continues to improve in healthcare, but fully integrating the patient’s experience remains a work in progress. Exam tables that are too high, rooms that don’t accommodate mobility devices, lighting that heightens visual impairments, and medical providers untrained in disability-specific care can all create barriers to quality care. These barriers can lead to delays or denials of essential services, often affecting underrepresented groups the most, contributing to disparities in health outcomes.

Preventive healthcare plays a vital role in reducing long-term health risks and supporting independence. One grantee partner is investigating these disparities, examining how factors like income, location, and race/ethnicity affect access to preventive services such as dental and vision care. Their early findings reveal key accessibility challenges, including:

• Lack of transfer equipment in exam rooms.
• Limited accessible parking at healthcare facilities.
• Providers unprepared to address the complex care that often accompanies living with a disability.

Most healthcare research focuses on primary care, but this project highlights how preventive services are often overlooked. More than one-third of participants reported being turned away from a provider due to accessibility issues, underscoring the need for healthcare environments to adopt universal design principles from the start. Addressing these challenges goes beyond adding more services; it requires additional medical training, access to adaptive devices, ensuring healthcare spaces meet diverse needs, and eliminating systemic barriers. True inclusion in healthcare involves people with disabilities in the decisions that shape their care, leading to more responsive, proactive, and inclusive systems that support long-term health and independence.

Strengthening Inclusion Through SCI Research

Scientific advancements in SCI care often claim to prioritize inclusion, but who determines what problems research should address? Too often, studies have focused on the SCI experience from an outside perspective, without fully integrating the voices of those actually living with it.

The North American Spinal Cord Injury Consortium (NASCIC) is trying to change this. As a grantee partner, they developed a course that trains individuals with SCI to actively participate in the design of research projects. Instead of researchers determining what questions matter on their own, this initiative aims to train people with lived experience in how to participate in the development and conduct of a research study so that they can share their experience and heighten the potential for impact.

The NASCIC course is a 12-module program created with input from over 100 individuals from the SCI community, including researchers, advocates, and people with lived experience. It provides:

• Training on how to engage in SCI research as partners rather than passive participants.
• Tools for advocacy, helping individuals with SCI ensure their voices are heard in scientific discussions.
• Stronger community connections, building networks between researchers and the people most impacted by their work.

By involving individuals with SCI in shaping research, we ensure that advancements address real-world priorities and lead to practical solutions that enhance quality of life.

Who Shapes the Future of Accessibility and Inclusion?

True inclusion isn’t just about meeting standards; it’s about ensuring that people with a disability have a voice in shaping the spaces, systems, and innovations that affect them. When individuals with lived experience take an active role in these decisions, accessibility shifts from a set of guidelines to a lived reality that reflects their practical needs and everyday experiences.

Our grantee partners demonstrate that inclusion isn’t a checkbox; it’s a process shaped by those with real-world insight. By centering their expertise, we move beyond accommodation and toward true equity—where people don’t just navigate spaces but actively shape them.

Misconceptions about spinal cord injury (SCI) are pervasive, often oversimplifying or distorting the realities of life with SCI. These misunderstandings fail to reflect the vibrant, dynamic lives individuals with SCI lead. At the Craig H. Neilsen Foundation, we recognize the importance of creativity—one of our core values—in addressing these assumptions and advancing innovative solutions in both research and programming. Together with our grantee partners, we’re not just breaking down outdated ideas; we’re showcasing how creativity drives meaningful change for the SCI community.

One common misunderstanding is that people with SCI are solely focused on walking again. While mobility can be a significant goal for many—and some individuals with SCI retain the ability to stand or walk to varying degrees—individuals with SCI have diverse priorities that go far beyond physical rehabilitation. Building strong families, managing health like bowel and bladder care, advancing in their careers, and pursuing education are significant aspects of one’s quality of life. For instance, one grantee partner developed a program focused on workforce inclusion and is addressing barriers to employment by offering job readiness training, mock interviews, resume assistance, and job placement support. Participants leave not only with the tools they need to secure employment but also with greater independence, stronger community connections, and the ability to pursue fulfilling careers. This kind of impact reflects the breadth of goals within the SCI community and the creative ways grantees are helping individuals achieve them.

Another misconception suggests that certain activities are just not possible for individuals with SCI. However, adaptive programs have repeatedly demonstrated that access, not ability, is often the deciding factor. Through scientific advancements, specialized equipment, and supportive environments, individuals with SCI participate in activities like surfing and skiing as well as other high-energy pursuits. By embracing the opportunity to challenge assumptions about what’s achievable, they take themselves and others beyond perceived barriers. As an example, adaptive surfing programs equip participants with customized boards and expert guidance, ensuring both safety and inclusion. These initiatives aren’t just about recreation—they’re about restoring confidence, fostering community, and proving that inclusion isn’t just possible, it’s necessary. When individuals with SCI have an opportunity to participate fully, not only do their lives change—it allows perceptions to shift, barriers to fall, and a more equitable world to take shape.

As the program leader from Life Rolls On Foundation described, “It has allowed us to provide more people with SCI a platform not only to surf and do something they may have never thought was possible, but we also provide a safe and comfortable environment to interact with other SCI people, helping to create long-lasting friendships and boosting self-esteem. The impact is truly amazing and priceless. You can witness transformation and see the smiles it puts on these people’s faces.”

While creative adaptations continue to expand what’s possible, it’s important to acknowledge that systemic barriers persist. A world not designed with SCI in mind still limits participation, often due to inaccessible infrastructure or exclusive environments. Addressing these challenges requires creativity not only in designing programs but also in rethinking how spaces, activities, and systems can be more inclusive. At the same time, individuals with SCI often demonstrate remarkable ingenuity, finding alternative ways to achieve their goals using the tools and resources available to them. This resourcefulness highlights the resilience and creativity of the SCI community and the need for proactive, inclusive design that minimizes barriers rather than requiring workarounds.

At the Craig H. Neilsen Foundation, we see firsthand how the SCI community rethinks its limits every day. The work of our grantee partners not only challenges myths but also builds a future where individuals with SCI are empowered to pursue their ambitions—on their terms. By shedding light on these stories, we aim to create a more informed, inclusive, and equitable world.

At its core, representation is about access—not just to being seen, but to contributing, expressing, and creating. For individuals living with spinal cord injury (SCI), breaking into media and entertainment represents more than an opportunity to tell authentic human stories. It’s about accessing the creative space to shape narratives, showcase talents, and connect with audiences in ways that redefine outdated perspectives.

Progress like this is vital, especially considering how far representation still has to go. A study by Nielsen Media Company revealed that only 4% of top TV shows in 2021 featured characters with disabilities, despite 26% of the U.S. population identifying as having a disability. The Craig H. Neilsen Foundation is proud to support grantee partners working to close this gap. By addressing barriers, advocating for accessibility, and creating equitable hiring pathways, they are expanding opportunities for people with SCI to thrive in all facets of media.

The recent success of Wicked, highlights the growing recognition of authentic disability representation. Marissa Bode, an actress with SCI who uses a wheelchair due to an injury sustained at age 11, portrays Nessarose—a character who uses a wheelchair—in the film. This casting choice marks a significant milestone, as Bode is the first actor with SCI to bring this decades-old character to life. “I love seeing disabled characters be played authentically by real disabled people because no one knows us better than us,” Bode told The New York Times.

Representation on screen is significant, but just as important are the opportunities behind the scenes. One of our grantee partners established Hollywood Working Groups for People with SCI, and is hosting workshops and webinars for studios, creating pathways for internships and jobs, and advocating for accessible production spaces. Actor Danny Gomez, who lives with a SCI and worked with grantee partner RespectAbility, highlighted the challenges of accessibility on set: ‘While on set for a commercial, I was unable to find an accessible restroom. All the other actors on set had access to a bathroom and trailers, but the company who decided to shoot didn’t even consider the needs of someone with a disability,’ he revealed. Another grantee partner renovated a historic theater to include elevators, ADA-compliant restrooms, and accessible dressing rooms, ensuring every creative—actors, directors, or crew members—can participate fully in their craft. Representation in media is about creating meaningful opportunities for people with SCI to contribute their talents and perspectives as storytellers, innovators, and leaders whose voices enrich the narratives we share.

The Neilsen Foundation remains committed to supporting initiatives that amplify the talents of individuals with SCI. By ensuring access to inclusive spaces, resources, and pathways to participation, we are building a future where creativity knows no bounds and everyone has the opportunity to have their story be told.