No disability or dictionary out there is capable of clearly defining who we are as a person.” -Robert M. Hensel

The founder of multinational non-profit WAWOS, Jacquie Robison is leveraging her 20 years of Marketing and Communications experience spanning multiple media and industries to disrupt the narrative around physical disability. She launched her career in sports marketing and brought that strategic insight to the media side at CBS-affiliate KPIX-TV. From there, Jacquie jumped into the dynamic tech world of start-ups, leading consumer and brand marketing efforts. These experiences provided hands-on experience in growing collaboration, team building, and driving to a common goal.

Journey of Creating WAWOS

When Jacquie became a mother, she never expected that one day she would hear the words, “Your daughter has cerebral palsy,” which upended the path she thought her parenting journey would take. The diagnosis of her daughter Sofia reinforced to Jacquie that we are each empowered to create our own path and discover new destinations. “I became an accidental ally in many ways,” Jacquie says. “I’m the first to acknowledge that I give physical difference and disability much more thought than I did before my daughter’s diagnosis. When you know better, you do better, and I’m proud to leverage my business background to be a changemaker for disability advocacy.”  When Sofia was prescribed a walker to assist with her steps and mentioned that people stared without saying hello, Jacquie challenged herself with the question, “How can I motivate my daughter to walk and encourage others to see beyond the device and appreciate the remarkable child she is?” With this question in mind, Jacquie purchased a sewing machine and developed a simple design for a walkercape, featuring a leotard and tutu she stitched on by-hand. The reaction from her daughter was absolutely electric. But it didn’t stop there—for the first time, people started engaging with Sofia, inquiring about her love for ballet and praising the delightful design. Jacquie believed that her idea could make a difference for other families by providing an opportunity to celebrate their children with disabilities, leading her to establish WAWOS. WAWOS stands for “We’re All Working On Something” and reinforces the truth that we are all more the same than we are different. The organization’s mission is to shift perceptions of disability, advocate for access to adventure for people of all abilities, and promote nclusion.

As an all-volunteer organization, WAWOS and its flagship program, WAWOS Wear,  creates and provides walkercapes free of charge to pediatric therapy clinics, rehabilitation hospitals, and directly to families. To date, they have distributed over 4,200 walkercapes, sparking conversations, fostering connections, and building a sense of community. WAWOS US is headquartered in San Francisco, CA, while its sister organization, WAWOS Canada, is based in Toronto.

Adventures without Barriers

Research has shown that for children with disabilities, participating in adventures with neurotypical kids can enhance self-confidence, build friendships, and deepen empathy and inclusion for everybody. “People with disabilities are people first and foremost,” Robison says. “We launched this program to celebrate the child’s personality, and to encourage others to look beyond the device and see the person.”

Source: Promoting the participation of Children With Disabilities in Sports, Recreation, https://publications.aap.org/pediatrics/article/121/5/1057/73486/Promoting-the-Participation-of-Children-With?autologincheck=redirected

From Inspiration to Empowerment

The idea for WAWOS was born out of a conversation between Jacquie and her daughter, Sofia, who has a mild cerebral palsy diagnosis. During Sofia’s sessions stepping with her walker, she noticed that people were staring but not engaging in conversation. This observation struck Jacquie, who realized that walkers lacked a design factor and were purely functional. Considering Sofia’s love for ballet as a student at Tutu School, Jacquie had a spark of inspiration to incorporate Sofia’s interests and personalize her walker.

The initial concept took shape with that first walkercape, featuring a simple design with a leotard and tutu attached. Sofia’s reaction to the walkercape was extremely positive and went beyond her personal delight. People started approaching her, initiating conversations, and showing interest in her passion for ballet. This transformative experience became the catalyst for the idea behind WAWOS.

The concept was not only about Sofia’s individual joy but also about creating opportunities for conversation and connection with others. Jacquie recognized the potential to use walkercape designs as a means to engage with children, express their interests, foster connections, and challenge stereotypes that exist for children with disabilities.. This marked the beginning of the journey to launch WAWOS.

Connecting Through Stories

Jacquie recognizes that the marketing and communication principles she learned in the for-profit sector are equally relevant in the nonprofit world. The principles include increasing brand awareness, articulating the organization’s value proposition, highlighting the need in the marketplace, and connecting with relevant audiences. These audiences may include families with children who have physical disabilities, donors who share the organization’s mission, companies with Corporate Social Responsibility initiatives focused on disability inclusion, and volunteers who can contribute to the cause.

One of the most effective ways to connect with these audiences is to let the community share their stories about the impact of walkercapes in creating connections and building friendships. By amplifying these stories and highlighting the importance of access to adventure for everyone, WAWOS can raise awareness of their mission and values. This approach allows the organization to connect with their audience on a deeper level and build relationships based on shared experiences and values.

Disrupting the Narrative

Jacquie challenges the common misconception that children with disabilities aren’t interested in participating in activities with their peers, including neurotypical kids. As the disability visibility movement gains momentum, barriers to inequality are being addressed, and the narrative surrounding disability is evolving. Representation is a critical element of changing the lens through which disability is viewed. It is a natural part of human diversity and should be embraced as such.

There have been significant strides in promoting disability visibility, including models with physical disabilities walking the runway for major fashion brands, designers creating stylish and contemporary adaptive clothing, and high-performance athletes competing in the Paralympics receiving more broadcast time than ever before. Jacquie believes that exploring the world is essential for driving curiosity and confidence in every child,no matter their physical ability. This belief was a driving principle behind the WAWOS Wishes program. Jacquie’s daughter has been skiing since the age of five, thanks to organizations providing adaptive equipment and lessons for kids with neuromuscular delays. Jacquie believes in showing up and standing up to support other nonprofit organizations whose work is connected to WAWOS’ mission. The WAWOS Wishes program provides directed gifts to support charities that make recreational experiences available to children with disabilities, enabling more families to access these opportunities.

Keys to Balance and Fulfillment

Jacquie has discovered several guideposts that she incorporates into her routine, and they have proven to be effective for her. Here are the key elements she applies:

• Starting the day with coffee alongside her husband, Jeremiah: championing access to the world is a shared pursuit for  her family. Jeremiah has not only been her biggest supporter of WAWOS, but is also the founder of  medtech startup, CIONIC.
• Establishing a structured work routine: Jacquie finds that dedicating specific blocks of time for strategic and operational tasks enhances her productivity and is driving long-term efficiency for the organization. These blocks include replying to emails, testing, measuring and optimizing marketing and social channels, connecting with community partners and volunteers, drafting proposals and grants, and scheduling quiet time.
• Demonstrating leadership and embracing vulnerability: Jacquie understands the importance of sharing clearly defined strategic plans, capturing and sharing the impact of programs, tracking the organization’s financial health, and communicating with its community. Vulnerability is also a key part of her leadership approach; sharing candidly the areas where her expertise is still emerging, and inviting board members with institutional knowledge in those areas builds trust, and encourages collaboration and teamwork.
• Engaging in regular outdoor runs: Jacquie makes it a priority to go for a run at least four times a week. Physical activity helps clear her mind and effectively manage stress.
• Attitude of gratitude: Jacquie expresses gratitude for her network of friends and her extended family, who support the WAWOS mission. She’s thankful for the flexibility she has as a founder, which means picking her daughter up from school and preparing dinner together; cherishing the moments shared within their small family unit of three.

By incorporating these guideposts into her routine, Jacquie is able to navigate her day with intention, balance, and a sense of fulfillment.

Staying Curious, Connected, and Authentic

To stay up-to-date with the dynamic marketing and communications environment, Jacquie prioritizes staying curious and informed. She utilizes tools such as Google Alerts and digital analytics to monitor engagement and interests of the audience, working closely with the marketing team. WAWOS also conducts surveys through email to maintain active communication with the community. Jacquie finds resources such as Forum One and The NonProfit Leadership Lab helpful for nonprofit organizations, but also emphasizes the importance of authenticity and aligning with the organization’s values of community, inclusion, and disability pride when developing communication strategies, rather than chasing trends.

Fostering Compassion and Inclusivity

“It shouldn’t have to happen to you, for it to matter to you.”

Jacquie emphasizes the importance of normalizing physical differences and disabilities with all children to foster compassion and empathy. She suggests using empowering and inclusive language when discussing these topics with your child. For example, when talking about a child using a walker, you can explain that it’s a tool that helps them strengthen their legs and participate in games that both of you enjoy. It’s crucial to avoid language that pities or undermines the child’s capabilities.

To make these concepts relatable, Jacquie suggests connecting them to experiences your child may already have. For instance, you can mention a grandparent who uses a walker or a family member who wears glasses, highlighting that these are tools that assist individuals with different aspects of their lives while not diminishing their value and worth.

Additionally, Jacquie recommends several books that serve as valuable resources for starting conversations, allowing space for children to ask questions, and fostering an inclusive mindset. Some of her favorite titles include:

“Demystifying Disability” by Emily Ladau
•  “When Charley Met Emma” by Amy Webb
•  “Gary’s Gigantic Dream” by Dr. Nicole Julia
•  “Just Ask!” by Supreme Court Justice Sonia Sotomayor
•  “I am Me from A to Z” by Victoria Nelson
•  “Let’s Go Play” by Shelby McCarthy

These books offer diverse perspectives and can help children understand and embrace differences while becoming allies in promoting inclusivity.

Advocating for Children with Disabilities

Jacquie understands that receiving a diagnosis for a child with a disability can be overwhelming for parents and caregivers. She advises them to take a deep breath and be kind to themselves because their child is still the same incredible person they were before the diagnosis. Jacquie believes in using the power of “yet” versus “can’t” when talking to children with disabilities. By telling them “You’re not yet able to do that,” children hear the message to keep trying and never give up.

As a parent of a child with mild cerebral palsy, Jacquie spends a lot of time reading about existing and emerging modalities to identify new opportunities to unlock her daughter’s potential. She believes that every child is unique, and it’s important to make sure her daughter knows she is perfect as she is. The journey is not about making her “typical,” but rather about helping her gain strength, control, and confidence. Jacquie recommends leaning into the wonderful accounts on social media, where families share their journey navigating a diagnosis for their child and are open about the highs and lows.

Jacquie emphasizes the importance of advocating for your child with disabilities. Advocating begins with understanding the issue, thinking about your child’s needs, and being an active participant in presenting solutions. It’s important to know your child’s rights and to speak up for them, but equally important is to help your child learn to advocate for themselves by building their confidence and giving them practice. Jacquie recommends being prepared with a list of questions and organizing and prioritizing your thoughts when addressing an inequitable situation. Building communication with teachers, family, and your child’s medical team is also crucial. Finally, providing feedback and updates when things are going well creates a foundation of support for when things get difficult or you encounter a roadblock.

Empowering Children and Spreading Joy through its programs

WAWOS, a registered 501(c)3 organization in the United States, also operates as an independent charity in Canada (WAWOS Canada). Both charity organizations are fueled by a board of directors who donate their time, and supported by dedicated volunteers. In addition to its walkercapes initiative, WAWOS collaborates with community partners to provide fun, accessible VIP experiences for kids with neuro physical differences and their families. Adventures at major league baseball parks and at world-class airshows are a few examples of the outings WAWOS has delivered. As demand for the free walkercapes grows, WAWOS expands its pool of volunteers by actively engaging with individual sewists, community centers, and organizing corporate team-building events known as “Sew For Service.”  By supplying free walkercapes to physical therapy practices, pediatric rehab hospitals, and families directly, WAWOS has established a distribution network. “Every time a child is prescribed a walker, we want them to receive a free walkercape. That’s our vision”, Robison says. “We want the child, and their family, to know that their son or daughter is not just listened to, but heard. Not just looked at, but seen for the incredible, unique person they are.”

Website: https://wawos.org/