Ubuntu - the Importance of Empathy: A Father’s Perspective by Ali Allawala (guest writer)

My daughter Alaiyah was born in Karachi and she was born with Down syndrome. We had received a post-natal diagnosis, although there had been some suspicions before her birth. She had a cardiac arrest a few hours after she was born, had to be resuscitated and was put on a ventilator. Countless complications and blood transfusions later, she finally managed to pull through. We held her for the first time exactly twenty days after she was born. We brought her home after she spent a month in the NICU. She's had several surgeries - some major, some minor, and quite a few hospital admissions in the past 6 years but for the most part, is doing very well. 

If you ask any parent of a child with special needs, they will tell you that having such a child changes you in ways you could never have imagined. You start looking at the world from a different lens. There are many joys and many rewards. But there are so many more challenges too. There are reminders in every day of what could have been. There are times when you are convinced that you cannot take it for even a second longer. But when you love someone so desperately who is part of a marginalized group, you do learn to overcome. You learn to rise above all the unsolicited advice, unkind comments, curious stares, and moments of complete and utter frustration. 

And if you are really lucky, if all the forces in the universe are conspiring in your favour, you are given the opportunity to start a ripple in the water. In 2014, my wife and I, along with a group of other motivated parents and family members of children with Down syndrome, set up the Karachi Down Syndrome Program (KDSP), the only organization in the country advocating for the acceptance and inclusion of people with Down syndrome. The motivation behind setting up KDSP was to change the experience of all those who were to become future parents of children with Down syndrome. We didn’t want others to go through what we did. 

Down syndrome is one of the commonest genetic anomalies. Many of the health conditions associated with it are well-known and expected. Yet, time and time again, we would interact with physicians who would provide us with inaccurate information and guidance. Time and time again, we would be told that such and such tests or certain equipment to conduct those tests are locally unavailable for a child her age, and so our daughter would be denied proper medical intervention. At the time of her birth, we were given very little guidance as to what to expect, where to go for her early intervention therapies, what kind of medical complications we would need to look out for, etc. And most of the information that we did receive was very biased, negative information.

Yet, it is my opinion that all of this would have mattered less had we been given a little more of just one thing….

....there is a concept known as Ubuntu, which has its roots in humanist African philosophy. It is the belief that we are defined by our compassion and kindness towards others. I very strongly believe that empathy and compassion are the cornerstones of any decent society, decent institution and a decent human being. As a parent of a child with special needs, this belief has only become stronger with time. As a society, we’re pretty much running on empty as far as the empathy fuel tank is concerned. I'd like to describe two experiences that we have had that can help in distinguishing between professionals and institutions that have fully endorsed the Ubuntu philosophy, and those that still have a long, long way to go. 

Some time ago while we were in Karachi, our daughter had to be taken to a doctor on account of a severe chest infection. After ruling out pneumonia, this doctor told us there was nothing to worry about and that the infection would clear up after a round of antibiotics. Still concerned, primarily because our daughter physically looked so unwell, we asked the doctor a question regarding the potential complications of such an infection in reference to something we had read online. He proceeded to shut down all further conversation by advising us to just give her the antibiotics and something to the effect of how we should not try to use Google to pursue medical degrees. Too stunned to say another word, we left. 

To this doctor, who is regarded widely as one of the most qualified and respected paediatricians in the city, I would like to say: As a parent of a sick child, there is more at stake for me, than there is for you. I will gather every last morsel of information that I can get my hands on because this is my child in question. Reassuring me and addressing my questions will only help me to help my child feel better, which is your job too! We know you are in short supply and that your days are long and hard. But please do not undermine how I, or other parents feel about our children. Please try and put yourself in our shoes when you speak to us. 

Compare this instance to the time when we were with our daughter in the post-surgery recovery unit at Texas Children’s Hospital after she had had a five-hour long surgery – a mastoidectomy. The surgeon came out to brief us about what had transpired in the operating theatre. We obviously have a bad habit of asking questions so we asked him a couple of questions too regarding the prognosis of our daughter’s hearing. This surgeon - who is no small fish in the field of otolaryngology in his part of the world - looked around for paper to write on, and upon not finding any but determined to address our concerns anyway, he drew out the entire anatomy of the ear on the knee of his scrubs, and explained to us exactly what we wanted to know. Utterly relieved and satisfied by knowing what we could expect from then onwards, we were able to fully focus on our daughter’s recovery. 

Why does empathy and compassion and kindness matter in a hospital setting? A few days ago I came across a blog post about parenting a chronically sick child while at the hospital. The blogger writes: “I consider myself part of my son’s health care team. In the past, I used to see myself as part of my son’s entourage, and the healthcare providers as his care team. Now I think differently...I know that my vigilance can prevent errors, increase his safety and reduce the length of his hospital stay.”

Empathy and compassion matter, not just for the kids who are the patients, but for their families too - because at the end of the day, we are all on the same team. An institution can be as technologically advanced as possible with state of the art equipment and funky furniture, but without embracing compassion at the heart of its service, by not making it the basis of every policy that it develops, it will still be lacking. It is my deepest wish and greatest hope that every hospital considers practicing the art of empathy as the foremost duty towards all those who step inside.

[from Narrative Medicine]

CREDITS:

About the Author: Ali Allawala is co-founder and CEO of the Karachi Down Syndrome Program. Watch him Ignite about his passion for Alaiyah and the KDSP at this link. 

Editorial Note: This is from a 'phase II' continuation of Narrative Medicine at AKU - what started as a Workshop-based initiative on January 20^th, 2016. The editorial work was performed by the Writers’ Guild, an interest group at AKU, with the purpose to promote love of reflective reading and writing, within and outside of  AKU. This narrative was originally written as a speech that was delivered at the 2nd AKU Hackathon, Hack Paeds 2017. 

     

DISCLAIMER: Copyright belongs to the author. This blog cannot be held responsible for events bearing overt resemblance to any actual occurrences.