Down Syndrome: This is the Reason Preconceptions are Unfortunate

The medical record perplexed me. “Unfortunate 33-year-old-man with Down Syndrome here for routine visit for ear wax removal.” This gentleman had just moved to our area and needed a new doctor to take care of his ears. I was meeting him for the first time. He brought in an envelope full of records from his prior ear, nose, and throat doctor. Each visit was documented with an entry that began with, “Unfortunate 33-year-old man with Down Syndrome.” There were not only records printed from an electronic medical record (EMR), in which lines and even paragraphs can be copied and pasted, but also handwritten notes predating the EMR, in the typical doctor’s handwriting that I myself have taken to a new illegible level.

All of this patient’s records described him as unfortunate.

Now, I have seen records that say things like, “Unfortunate mother of three with Stage IV breast cancer, now in hospice.” “Unfortunate forty-year-old man with hereditary end-stage cardiac disease.” “Unfortunate seventy-year-old pedestrian struck by vehicle.” But the patient sitting in front of me, telling me about his ears and how he has needed them cleaned professionally every six months, did not have cancer, heart disease, or any recent trauma.

In fact, Jim (not his real name) was in excellent shape. He was a Special Olympian swimmer, having won multiple medals. He did not have any chronic illnesses. Besides a couple of Strep Throat episodes as a child, he had been as healthy as healthy can be.

Although Down Syndrome does carry with it a risk of congenital heart defects, respiratory illnesses, and sleep apnea, Jim did not have any of these. In fact, the only doctor he needed to see over the years was the ear, nose, and throat doctor for ear cleanings. Now, ear wax can be a nuisance, can sometimes lead to ear infections (Jim hadn’t had any), and can temporarily block hearing, but it’s certainly not a major illness. So I figuratively scratched my head – why was Jim unfortunate?

Why Is This Man Unfortunate?

It didn’t take me long to realize that the prior physician saw Jim as unfortunate because of the Down Syndrome, and this disturbed me on many levels. Did this physician consider Jim unfortunate because of the potential problems Down Syndrome can pose? We already established that Jim didn’t have any of these. Did Jim seem unfortunate because he was not capable of interacting or functioning?

That couldn’t be it, as Jim was sitting here speaking with me, telling me his history, and telling me about the Special Olympics, and his current job stocking shelves at a supermarket. No, sadly, I realized that his prior doctor saw him as unfortunate simply because he has Down Syndrome.

So I took care of Jim, cleaned his ears, talked about his job a bit, and then set up his next appointment for six months from now. Unfortunate? Hardly. Jim was vivacious, gregarious, and a pleasure to see. He was happy and socially adept. So, what would make someone consider him to be unfortunate?

As only I can do, I obsessed over this. Do we project our perceptions and our own position in life onto others? We certainly can, so the question then becomes whether or not we can maintain control over such projection.

Jim’s prior doctor saw having Down Syndrome as an unfortunate situation. Perhaps he could not fathom having a disability or having a child with a disability. Perhaps he saw all people with Down Syndrome as having severe mental and social deficiencies, which would be a terrible generalization. Perhaps, and I hope this is not the case, this physician looked down on others with mental challenges.

Am I being harsh? Consider the fact that, at one point, many people with Down Syndrome were institutionalized. Worse fates existed for affected people in Nazi Germany. Consider other traits that have erroneously been labeled as disorders, perhaps causing “affected patients” to also be considered unfortunate – homosexuality comes to mind, appearing in the DSM (Diagnostic and Statistical Manual of Mental Disorders) until 1973, at which point it was shifted into the sexual orientation disturbance diagnosis and then finally, in 1987, it was fully removed from the DSM.

Let’s Not Project

My point is that we do not have the right to project our own preconceptions and misconceptions onto others. Consider some facts I came across regarding Down Syndrome from the National Down Syndrome Society and from Down Syndrome in the Workplace.

• One in 691 babies in the US is born with Down Syndrome; that’s 6,000 babies per year.There are 400,000 people living with Down Syndrome in the US, and 4 million people worldwide.
• People with Down Syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote, and contribute to society in many wonderful ways.
• All people with Down Syndrome experience cognitive delays, but the effect is usually mild-to-moderate and is not indicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends, and the community enable people with Down Syndrome to lead fulfilling and productive lives.
• 15,000 of the 400,000 people with Down Syndrome in the US are employed.
• Looking at Special Olympics statistics, more than 3.1 million athletes from 175 countries participate.

I guess I have a hard time seeing those affected as being unfortunate. In fact, I have relatives who are intellectually challenged and are among the happiest people I know. Ask them if they think they are unfortunate, and they would laugh. Ask their families if these individuals are unfortunate, and they would be incensed.

Preconceptions are Unfortunate

What is my ultimate point? As I stated earlier, we do not have the right to project our own preconceptions and misconceptions on others. If we consider people with Down Syndrome unfortunate, keeping in mind that in the past, we have considered homosexuality to be a mental disorder, what about other differences? I know I am a bit hyperbolic in my discussion, but consider how we treated individuals with AIDS when it first presented among homosexuals and IV drug abusers. Did we do any better than those who shunned lepers in biblical times?

I know I’m making a lot out of one word – unfortunate. But it is a reminder to me that we need to reserve our judgments and think deeply about our perceptions, particularly when considering the situations of others. Jim was far from unfortunate, and I am quite fortunate to be able to see Jim every six months.

 

Arthur M. Lauretano, MD, MS, FACS

October 9, 2016

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