Solutions Marketing Group

Providing clients with innovative strategies that position them to understand, penetrate and retain the disability market.

Archives for February 2017

Parenting a Child With a Disability Changed My Business

Carmen and Marcus

Carmen and Marcus enjoying a night at the circus c.2006.

In 2001, at the age of 35, I was pregnant with my first child. Since I am a paraplegic this wasn’t a decision I took lightly because additional health considerations had to be weighed.  Much to my delight the pregnancy went well and I didn’t avoid swollen ankles, along with cravings (my indulgence of choice was Popeye’s Chicken the first trimester).

At forty weeks, to the day, I delivered my beautiful baby boy – Marcus Solomon Jones. Upon delivery Marcus couldn’t breathe. The doctors began to panic as he lost color. The medical team had difficulty placing an endotracheal tube down his airway for additional support.  Once secure, the hospital decided he needed to be transferred to a hospital with a Level 4 neonatal intensive care unit (NICU). In an instant, his Dad and I went from palpable joy to utter fear.

The surgeons discovered Marcus had a tiny (think: coffee stirrer) trachea and required surgery to insert a tracheostomy tube. He also had a cleft lip and palate, which made it difficult for him to swallow, which resulted in another surgery to insert a g-tube for feeding. He encountered several setbacks, the first year, and we almost lived in the NICU.  When he was finally released from the hospital, we had 24/7 nursing care and my home’s second floor became a medical unit. It was hard to wrap my mind around the initial excitement of having a baby, being dashed by a life filled with daily therapy sessions, mounting medical expenses, strained relationships and social isolation. When I woke each day and Marcus was still alive, I considered it a small miracle.  Really.

While I’d started the Solutions Marketing Group a couple years earlier, and my team and I had done amazing work to advise and build disability inclusive strategies for Fortune 500 companies, I didn’t know one thing about the disability parenting culture. I had to figure out our new normal, which was a long process filled with tears, lots of medical appointments, and helping bridge my son’s developmental gap.

My breakthrough occurred while working on a market research project in Florida.  A client engaged SMG to gain insights about individuals with disabilities and their families. While moderating the groups, I listened to parents share how they adjusted their expectations and family life. My AHA moment occurred during my interaction with respondents and my heart soared with excitement. While this wasn’t a path I’d choose, I felt less alone and saw an opportunity for my company.  I discovered Census Bureau data that of the 70 million families in the U.S., 19 million families have a member with a disability. I knew families like mine wanted to hear from companies, like my client, assuring them they were understood. I decided to harness my personal experience and marketing expertise to deepen SMG’s portfolio to guide clients to target, employ and serve families in a bigger, bolder way.

I share my story to provide context for how my son was a catalyst for personal and professional growth, which changed my company. This unique journey has deepened my team’s ability to serve clients and position them for success. I offer a few insights that can strengthen your organization to market to, serve and employ families who have children with disabilities:

  1. Make Business/Employee Resource Groups Inclusive of Family Members: Many companies have affinity groups for employees with disabilities. An effective way to support employees with a family member with a disability is by providing a group for them. This platform offers a safe space for them to share resources, insights and peer support that is often needed.
  2. Provide Product/Service Enhancements Families Need: When my family went to Disney World Marcus was four year’s old son, wasn’t toilet trained and fed via g-tube. Prior to our trip, I did research and discovered Disney had private areas throughout the park, which allowed me to privately take care of his personal needs. Disney did their research and provided value families now enjoy without missing a beat. I suggest doing research to understand and identify specific enhancements your organization can make to meet the needs of families.
  3. Create Seamless Experiences for the Whole Family: Children with disabilities require a lot of attention from their parents. Typical siblings have told us this has an impact, as they have often felt overlooked. Your organization will win big by creating experiences the whole family can seamlessly enjoy. This can include a dedicated night for the whole family to enjoy a restaurant, theme park or movie. Or, it can include an event just for siblings of kids with disabilities.

Assuredly, as your organization strategically and authentically positions itself to meet the needs of families it will have a ripple effect that changes organizational culture and employee morale, garner positive public attention, and build a brand loyal relationship with consumers who are waiting to be reached.

Living the Life We Were Born to Live

By Joan Leotta

Born This Way, the Emmy award winning reality show featured on A&E, has set a new standard for people with disabilities in the entertainment industry. Now in its third season, the series grants a weekly glimpse into the lives and minds of people with Down Syndrome, as they experience the thrills and challenges common to all. In allowing millions of Americans to follow these thriving young adults, Born This Way fuses the ordinary with the extraordinary, as its fans learn to see people with the full or partial extra copy of chromosome 21 as capable, interesting individuals, and not as generic “Down syndrome” folks.

Born This Way Cast members

The cast of Born This Way: Top row (l to r): Sean, Jared, Steven and John). Bottom Row (l to r) – Rachel, Megan, Elena, Cristina, Caley and Cole

Development of Born This Way

Born this Way (BTW) was developed internally at Bunim Murray Productions (BMP) where founder Jon Murray also serves as executive consultant.  “Part of BMP’s mission,” Murray explains, “has been to feature people on TV who have been previously marginalized. We did it with The Real World on MTV where we feature 7 young adults of diverse backgrounds and we have done it in our casting of Project Runway on Lifetime.” As it turned out, BMP’s offices were located within a 10-minute drive of New Horizons of North Hills, a non-profit that provides services to people with developmental disabilities. In getting to know some of the clients of New Horizons, Murray and others at BMP realized that a community existed that was not being explored on prime-time television. Featuring the Down syndrome community was a project that fit the company’s goals and experience.

Casting the Show

In its search for cast members for the show, BMP benefitted from the support of local and national organizations such as New Horizons, Performing Arts Studio West, Special Olympics, Best Buddies, and National Down Syndrome Congress. Each assisted BMP in either the recruiting or the auditioning process. Still, as Murray points out, BMP approached selecting individual cast members as it does any other program. “We interviewed the potential participants on camera, getting to know them and their families. We also put them together with other potential cast members to see how they interacted with others.” As the selection process narrowed, the participants, who are paid for their work, “had an agent or lawyer negotiating their deal for them.”

Building Trust and Telling Stories

Sean

Born This Way cast member Sean

One factor in BTW’s success is the trust fostered between the cast and the production team. According to Murray, BMP lays this foundation “by reaching out to different organizations and non-profits that work with people with Down syndrome.”  In particular, New Horizons, RESPECTABILITY USA, and Gail Williamson of KMR Talent, who is also the parent of a child with Down syndrome have offered an invaluable expertise. The result has been groundbreaking programming that treats the cast as individuals and tells their stories with respect.

Though not without spontaneity, reality television does require direction. As Murray points out, “There is no script, but all of us (producers and cast) know what we are shooting each day. We don’t shoot 24-hours a day. We only shoot when specific things are happening that are part of the stories we are trying to capture.” Laura Korkoian who heads up the production staff “meets with the cast and their families at the beginning of each season to find out what is happening in their lives …We then work with the families and our principal cast to capture the story as it happens.” Meanwhile, behind the scenes, a team of people craft the gathered footage into a sixty-minute (minus ad time) show.

To determine which person will be selected for the single person camera cameos featured in each show, the production staff (consisting of Laura and her team) conducts regularly scheduled interviews with the cast and their family members. The staff then develops questions related to their observations during filming. It is at that point, Murray explains “we edit the episodes and decide which interviews to use”.  The lag time between shooting and airing is about three months.

In weighing the differences and similarities between BTW and other reality programming, Murray observes that “for the most part, this show is approached the way we shoot a number of our family based series. We work with the families to figure out what we will shoot and how we will tell their stories. The one difference might be that we have aligned with some non-profit organizations to help educate our team about people with Down syndrome. This alignment not only helps us tell our stories responsibly, it also sparks ideas for stories. Most of our cast and families already knew each other, giving Born This Way an authenticity many reality shows don’t have. That authenticity is further enhanced by the fact that our cast is very honest in their interactions with each other. I also love that the families of our cast are featured in the series. It is wonderful to watch our casts’ amazing parents who work so hard to help their children work towards full independence.”

Family Affair

Cast member Megan cries while her mother, Kris, embraces her

Bea, Megan and Kris

Some of the show’s most compelling moments took place at the Down Syndrome Association of Orange County when parents of cast members were filmed sharing their joys and challenges with the parents of toddlers with Down syndrome, all the while cast members interacted with the young children. As Murray explained, “we worked with the organization to plan the event. We thought it would be interesting for parents with babies and infants to hear from our parents and it would be interesting for our cast to take on the job of baby-sitting. Everyone who came to the event signed a release. Once the event was underway, we just filmed what happened.”

The episode was amazing not only in the absolute joy of the interaction between the toddlers and adults with Down syndrome, but also in the lesson of how much progress has been made in the public perception of people with Down.  The parents of the adults recalled being told to “give up” on their children in an era when services were limited. The toddlers’ parents received fresh hope as they were encouraged to believe that with hard work and persistence their children can achieve anything. The episode conveyed to the audience, too, that Down syndrome is not a limitation. It’s just a different path.

Success of the Show

Murray describes the Emmy nomination and win as great boosts for a show that began with only six episodes in its first season: “We were honored to be nominated and we were thrilled to win. It was definitely one of the top five moments of my career. And I know it was huge for our cast and their families. They were all warmly greeted by everyone at the Emmy’s including some of their favorite stars like Heidi Klum, Ryan Seacrest and Jane Lynch.”

The second season saw an increase to eleven episodes while season three will cap at ten. Murray also shared that, “Everyone is returning for season three. Plus, there will be a few new faces, but we’re staying mum for now the identity of those new faces.”

The Future

When asked what the success of Born This Way might mean for the future of people with disabilities in the entertainment business, the short answer from Murray is: “stay tuned.”

While this reply hints at what is to come, there can be no question of what has been accomplished. The producers and assembled cast of Born This Way have laid a rock-solid foundation for people with disabilities to walk out onto the world stage with greater confidence and independence. They have won over a viewership now capable of accepting people born with Down syndrome for who they are and who they can be.