John C. McGinley, an actor well-known for his role on Scrubs as Dr. Perry Cox, had no idea what it meant to love and to have the capacity to love until his son, Max, taught him what love is.
McGinley was expecting to have the idyllic “Norman Rockwell” moment when he was becoming a new father, going home with a healthy newborn baby.
However, once he received the diagnosis that Max has Down Syndrome, the hospital told him that he had the option to give Max up for adoption or have him placed in an institution. Max struggled to stay alive in the Neonatal Intensive Care Unit (NICU) for about a month with sleep apnea and seizures, which are some of the common issues that people that are diagnosed experience. “I had no idea what Down Syndrome meant when I got the diagnosis,” McGinley said, who came from a typical family of five children in New York.
Communication was the most challenging issue that he faced with Max when he was a young nonverbal child. Autism, intellectual disabilities, sleep apnea, congenital heart disease, and Alzheimer’s Disease can be seen in people who have been diagnosed.
“Max communicated with me by using gestures,” he said. ” Max attended school from K-12 with Santa Monica Unified School District, mainstreamed into classes with regular students. He had his own assistant to help him keep up with his classwork at school,” McGinley said. Additionally, McGinley paired Max with a typical buddy through BEST BUDDIES so that he would go out to places with someone at a regular basis that is age-appropriate rather than being without friends
McGinley turned to large organizations such as the Special Olympics and other organizations that serve the needs of people who have Down Syndrome for support to help him raise Max. He met Tim Shriver, the CEO of the Special Olympics, who has children with special needs. They both became longtime friends when McGinley became an advocate for
the Special Olympics 19 years ago.
McGinley helps to raise funding for the organization by meeting with people in Washington, D.C. such as Sen. Jack Reed from Rhode Island; Congresswoman Nancy Pelosi, Speaker of the U.S. House of Representatives; and Timothy Shriver, disability rights activist and CEO/chairman of the Special Olympics.
“When the (Special Olympics) athletes met with members in Congress who handle the federal funding for this organization, I could tell that the Congress felt inspired by what they saw in those athletes,” McGinley said. For example, Congresswoman Pelosi was interested to know the goals and needs of the Special Olympics. “The Special Olympics allows athletes with intellectual disabilities to be in an environment for (positive) growth and empowerment,” McGinley said.
McGinley wants to make the world a better place for people who have intellectual disabilities by joining nationwide campaigns such as “Spread the Word to End the Word” and “Pledge Inclusion” with the Special Olympics. Max has a strong impact on how McGinley feels about people who have intellectual disabilities. He wants to eradicate the “R” (retarded) word because it can make people with intellectual disabilities feel less valued as human beings. “These innocent people with intellectual disabilities cannot defend themselves against such derogatory terms and do not deserve to be picked on,” he noted.
The challenges raising Max brought more depth to his role as Dr. Perry Cox by giving the character a big heart with a sense of compassion towards others. McGinley wants to educate others to show compassion towards other people with intellectual disabilities and interact with them with compassion and love, not by ignorance. There are millions of children and adults with intellectual disabilities who need to be understood, not ignored, McGinley said.
He also wants to focus on Max’s abilities, not disabilities. Max, now 21, has been working at Starbucks and is playing guitar in a band with Spectrum Laboratory, a Los Angeles based organization that allows individuals with autism spectrum and other developmental disabilities practice their art through film, music, and animation—founded by Jason Weissbrod and Garth Herberg.
“Max also helps take care of his two younger sisters”, McGinley said. He always makes sure that Max is included in life, not excluded. He has a trampoline to help him exercise his muscles, since people with Down Syndrome are more prone to poor muscular tone.
When it comes to medical care for Max, he strives to find individualized medical care for him to address his unique needs. Max receives medical care at different facilities in Los Angeles and in Denver. He finds it a big challenge to find clinicians who are willing to care for Max as a person. Down Syndrome receives the least funding for medical research by the National Institutes of Health. McGinley has also focused his efforts on finding a cure for Alzheimer’s Disease, because people with Down Syndrome have increased risk of developing this disease when they grow older later in life during adulthood.
Therefore, this caveat pushed McGinley to accept Michelle Sie Whitten’s invitation to become a board member and international spokesperson with the Global Down Syndrome Foundation. Whitten, whose son has Down Syndrome, is the organization’s CEO and President. “We need to improve Alzheimer’s Disease research,” McGinley said. “I want to see the Down Syndrome Global Foundation to become a pioneer in research for Down Syndrome.” The Global Down Syndrome Foundation, based in Colorado, raises funding for education, awareness, and government advocacy for the Anna & John J. Sie Center for Down Syndrome, a medical care center for the Linda Crnic Institute for Down Syndrome housed at Children’s Hospital Colorado in Denver.
When asked what new parent of a Down Syndrome child should do, “A new parent should contact the Global Down Syndrome Foundation and move to Denver to learn the best tools to raise a child with Down Syndrome,” McGinley said. At this point, he feels that society has become more accepting of people who have disabilities including Down Syndrome, mentioning how Zack Gottsagen made Hollywood history at the 2020 Oscars as the first Oscar presenter with Down Syndrome. In fact, Tim Shriver from the Special Olympics and Michelle Sie Whitten from the Global Down Syndrome Foundation were some of the executive producers for the award-winning film, The Peanut Butter Falcon, that Gottsagen starred in with Shia LeBeouf.
Now at the age of 60, McGinley is still fighting to make the world a better place for people like Max, people with different types of disabilities, you and me to accept one another. “My son, Max, is my big gift. He is my life.”
