PAOH President’s Letter: Thank you, Cathy!
Dr. Cathy Makobe-Chiloane with her son.
By Steven Perlman, DDS, MScD, DHL (hon), PAOH President
Throughout our professional careers, we have all encountered patients, colleagues, people, or experiences that have touched us in a way that stands out from all others. Whatever role we played, they have succeeded in leaving their footprint in our lives.
I met Dr. Cathy Makobe-Chiloane in March 2017 in Graz, Austria. As Global Clinical Director of Special Smiles for Special Olympics International, I led the world’s largest public health dental program for people with Intellectual Disabilities (ID), which organized approximately 300 events in over 100 countries. Twice a year, we held a “Train the Trainer” event for interdisciplinary health professionals who would lead discipline-specific programs in their respective countries. These leaders were identified by Special Olympics and contacts in their healthcare system, associations, or academic institutions.
I had to approve the candidates following a review of their resume and brief personal statement. Each group consisted of approximately 14 candidates. My job was to educate them not only in dentistry but, of equal importance, in the world of ID and how to work within Special Olympics and the health system in their country.
We combined basic training with clinical experience through their participation in an actual Special Olympics health screening event, in this case, the World Winter Games in Graz, Austria. The 14 dental professionals all traveled to Graz in our program, funded through a grant from the Centers for Disease Control and Prevention. No one knew each other beforehand, yet the desire was that in the three or four days we spent together, our meeting would change their lives as much as they would change mine. Our group spent the entire few days together. There was no free time for any of us to do anything on their own. We packed as much as we could into the agenda.
“The lesson of Cathy’s story is we need to change the attitude, mindset, experience, training, and education of healthcare providers in their diagnostic abilities and treatment of people with intellectual disabilities. Not only do we need to train them in these skills, but we need to instill empathy, compassion, and humanity into their being. ”
After two days of the program, during a quiet moment, Cathy pulled me aside in a secluded area and sat next to me. “I want to tell you personally why I am here,” she said. “I have three fabulous children at home and, eight years ago, I had just delivered the new addition to our family, a healthy baby boy. As groggy, exhausted, and excited as I was, I anxiously and eagerly waited for the obstetrician to hand me my child so I could welcome him to the world. As the doctor held my child, he positioned him so I saw his feet first—and, as he turned my son so I could see his face, the doctor then said ‘I am sorry to tell that your son has all the facial and other characteristics of Down syndrome.’ He then proceeded to tell me how my family’s life would be forever negatively impacted, the burdens we would face, that I would eventually get divorced. He did not share a glimpse of positivity in our lives. He then suggested not taking my son home, but to leave him with the hospital who would take responsibility for his future. He said for me to go home to my family, forget this experience, as if it never happened, and continue on with our lives. I did not know how to react to the physician; I was in shock and disbelief of the news and how it was delivered to me. I groggily replied, ‘No, thank you, I am taking my son with me. He is a member of my family and will be raised with all the love and opportunities I have given to my other three children.’”
Cathy then proceeded to tell me how her son Thapelo has impacted her life, as a mother, parent, professional, wife, and leading advocate for people with intellectual disabilities, in her country and throughout the world.
For the past eight years, Cathy and I have stayed in close contact, working on many projects together. I look forward to our What’s App phone calls. Thapelo calls me Uncle Steve and excitedly tells me what he is up to.
The lesson of Cathy’s story is we need to change the attitude, mindset, experience, training, and education of healthcare providers in their diagnostic abilities and treatment of people with intellectual disabilities. Not only do we need to train them in these skills, but we need to instill empathy, compassion, and humanity into their being.
This is why I co-founded the American Academy of Developmental Medicine and Dentistry (AADMD), People Advocating for Optimal Health (PAOH), and HELEN Journal. Our hope is that no one should ever have to go through the experience that Cathy had, and the decision she was presented by a physician who lacked compassion.
This photo of Cathy and Thapelo is on my desk and serves as a daily reminder to me of how we need to create, change and be a voice for children and adults with intellectual disabilities. It’s caption beautifully states, “I thought I would have to teach my child about the world, it turns out I have to teach the world about my child.”
Thank you, Cathy, for leaving your footprint on my heart!
Steve Perlman, DDS, MScD, DHL (hon), HELEN Journal Co-Founder