What is a Normal Person Anyway?

A book review of Andrew Solomon’s Far from the Tree

Diversity is not a disease.

What does it mean to be human? What makes one unique? We can categorize ourselves in many ways, but our first role is daughter or son. We are programmed to attach to our caregivers and they us.

But what if we are profoundly different from our parents in away that the entire world can see? What if the difference is imperceptible and we can pass for normal? Is it good to be normal? Or is our bias against those different, the weird and abnormal, just a tyranny of the majority? How can we grow beyond tolerance toward honoring and celebrating diversity?

Andrew Solomon masterfully poses these questions with stunning stories, simplified science, and small servings of statistics in his latest book Far from the Tree. This 700-page tomb is the product of over a decade’s worth of research and hundreds of interviews. Not a word is wasted. The book deserves more than its eleven national book awards. For me, Solomon is the world’s most talented extant English writer.  

In Far from the Tree, Solomon explores two types of identity. A vertical identity is a defining characteristic passed down from one generation to the next, from parent to child, while a horizontal identity is new. For example, in the first chapter he describes how his loving, well-intentioned parents wrought distress by trying to cure him of homosexuality, a horizontal identity once characterized as an illness and illegal activity.

Solomon dedicates a chapter to each of 10 identities that range from admirable, pitiable, to unspeakable.

Tradeoffs dominate the discussion of children born deaf to hearing parents. Children raised with Sign as their primary language are not any more likely to have intellectual or emotional deficits, but as a child becomes increasingly immersed in Deaf culture, families can feel that they have effectively ceded their son or daughter to another community. On the other hand, restricting exposure to Sign language and forcing deaf children to speak and only learn lip-reading is associated with impaired language development, but it can enhance their capacity to integrate into society at large. Solomon fairly frames the ethics of cochlear implantation; since children acquire language early, surgery at a younger age enhances the effectiveness of the intervention, but the child cannot decide for him-/herself. The Deaf community sees cochlear implantation as the harbinger of their extinction; each surgery is the theft of a potential member. I had always thought of being born deaf as inherently bad, but if people can experience rich, fulfilling lives as Deaf, then is it just a benign deviation from normal?

In Solomon’s chapter about dwarfs, he describes an extreme example of parental efforts to normalize their abnormal child. During puberty, a dwarf can undergo “limb-lengthening,” which involves (a) breaking each arm and leg in multiple places, (b) stretching the extremities with a brace, and (c) allowing the bone to heal in; this is repeated multiple times over several years. Afterward, the individual can look like a short “normal” person. The procedure is repugnant to the Dwarf community, but practically everyone who has undergone it is glad they did. I imagine it would be too cognitively dissonant to feel otherwise. During his research for the book, Solomon attended the Little People of America convention; he relays the novel sensation of feeling conscious of his average height, because he was the oddity. Being normal is all relative.

The eugenic implications of prenatal testing are explicitly explored in Solomon’s chapter on Down syndrome. Access to safe abortion now poses a choice. Families describe the mix of joy and challenge brought by their affected son or daughter. The parents with serenity claim that they “wouldn’t have it any other way,” a reverberating theme throughout the book. Solomon writes how a child tested the character of peers by how their potential friend treated their sibling with Down syndrome. In my experience, individuals with Down syndrome tend to be gentle and jolly. A future society without Down syndrome would be markedly deficient.   

The chapter on autism touches the true spectrum of the disorder: from a high-functioning adult who proudly refers to himself as an “Aspy,” to an un-soothable, poop-flinging, head-banging toddler that terrorizes his parents. Solomon succinctly summarizes the theories for what autism is and why its prevalence appears to be increasing dramatically. He also catalogs the most popular forms of rehabilitation/therapy/school programs that mostly appear long on hope and short on evidence. Autism is simultaneously one of the greatest ongoing medical mysteries, a rich source of genius, and a lens into the workings of all human minds.

After a month-long rotation through Psychiatry as a medical student, I can attest to the accuracy of Solomon’s descriptions of schizophrenia. Multiple families share the story of how they lost their child to paranoia and hallucinations, as well as their caregiver fatigue. Parents try to put plans in place for when they pass away. The ethical issues of forced medication and hospitalization of individuals, who may not be an obvious harm to their self or others, is handled deftly by Solomon. To the chagrin of many, he even mentions the “Mad Pride” movement, which consists of psychotic people advocating for their freedom to think differently (medically speaking, pathologically) from the majority of others. Toward the benefits of such divergent ideation, many breakthroughs in science, especially physics, have been brought about by individuals with a strong family history of schizophrenia.

For the chapter on disability, Solomon interviews families of those with multiple severe disability (MSD). More than any other identity in the book, these individuals stretch the concept of humanity, because they often lack features said to set our species apart. Solomon summarizes the leading ethical perspectives on personhood and parenthood. He describes one family’s surprise of the backlash against their use of hormones to prematurely stop the growth of their pubescent child with MSD (wheel-chair bound and speechless) in order to better care for her. Another family shared the tragic story of their son accidentally drowning (due to negligence by a deeply regretful caregiver) at a long-term care facility after they could not meet his needs at home; although, the parents are certain he is more comfortable now. With medical technology advancing, people can be kept alive in increasingly tenuous circumstances. Where do we draw the line? What role should public funding play? I wish that we could hold a mature conversation about these issues, but the recent memory of fear-mongering cries of “death panels” suggest otherwise. I believe a society should be judged by how it cares for and empowers its least fortunate and its pursuit of truth and beauty.

Solomon dedicates a chapter to musical prodigies and their parents. He describes toddlers that imitate everything they hear on the radio. He reports another kid that recovers from a day at kindergarten by playing the piano for hours. The talent for playing and the need to play are difficult to untangle. Some parents push too hard. In other instances, the personal aspirations of the parent are often pitted against the goals for their gifted child. There is a battle between realizing a child’s musical potential and the development of emotional maturity and the freedom of self-direction. The nature of time dictates that practicing is time not spent doing normal kid stuff. It was surprisingly to learn how having, and being, a prodigy is both a blessing and a curse. 

I responded viscerally to the chapter devoted to children born as a consequence of rape. The usual secrecy surrounding this identity sets it apart. Mothers who loved their child would cringe at their touch because of whom (and what) they represented. Knowing where it was going, I would brace myself as each woman’s story began. I wanted to personally retribute the violence. Somehow, both sides of the abortion debate employed rape as justification for their position. Giving birth to children consequent of rape also raises the issue of perpetuating genes that could predispose one toward sexual assault. Solomon ends the chapter by noting how rape has long been used as a weapon of war, as was the case during the Rwandan genocide of 1994 (especially since many perpetrators had HIV); those conceived through this violence are known as “children of hate.” The extreme tragedy is hard to fathom. Nevertheless, it is imperative to explore, study, and implement strategies to reduce the prevalence of rape. Universities are now bastions of these efforts.

Solomon also interviews criminals and their parents. Some parents are repeatedly harmed by their child’s deceit and destructive behavior; others take steps to protect themselves while maintaining a slimmer of hope. Evidence points to strong peer influence on juvenile criminal behavior; the vast majority of crime committed by youth is in groups, while adults are more likely to be caught solo. Solomon studies the issue at a juvenile detention center that has recidivism rates lower than average, because of their comprehensive programming for family members, education, job-training, and emotionally expressive activities like theater. More importantly, the employees seem to care. The confluence of physical abuse, sexual abuse, and drug abuse among this population quickly rolls into a chicken-or-the-egg discussion. The cycle must be stopped. The details of conditions at some other sites can only be described as inhumane. Given the cost to society of repeat offenders, Solomon’s research begs the question of why the majority of youth detention centers (and our adult prisons) remain more focused on punishment than rehabilitation.

Transgender children comprise the final group identity profiled in Far from the Tree. Parents describe early signs of non-normative gender behavior, like their little girl disliking dolls and dresses and preferring short hair. Many children were depressed, acting out frequently, and poorly performing in school prior to transitioning. In hindsight, the solution was staring parents straight in the face; they just needed to listen to their child. One parent realized that she could either have a dead son or a joyful daughter; about 1 in 3 transgender persons have attempted suicide. The parent of the child’s biological sex tended to struggle more with the adjustment, e.g., a dad accepting that his son felt like more like a girl. Sibling reactions were full spectrum. The institutional barriers faced by these families demonstrate how gender variation remains a major civil rights issue in our society. When Hannah and I are expecting, I imagine responding to people’s question about whether the child will be a boy or girl with; “We know its genitals, but not its gender.” Or is that annoyingly politically correct?

The final chapter describes Solomon’s personal journey into parenthood. His tale is far from traditional, including in vitro fertilization, surrogate mothers/friends, and joint-parenting agreements. His research made him acutely aware of the inherent eugenics throughout the decision-making process. I feel joy for him and his family. I have no doubts that he is an excellent father. His book will make me a better one.

Several noteworthy themes emerged. First, many of the parents interviewed found themselves as activists by merely demanding the best for their child. When faced with the impossibility of molding their child into the norm, they bent the world toward their child.

Second, many parents exhibited mystifying ambivalence. They loved their child and were grateful, but they also acknowledged that they missed their old life, that they had to mourn the child that never was, and that their life would be infinitely easier without their unique child. Far from the Tree implores you to abandon the preference for clean categories and embrace the messy, gray-scale reality of life.

To be honest, I used to dread the possibility of having a disabled child. Maybe I thought that it would somehow reflect poorly on me. Now, I realize that reproduction is not about creating someone in your image; parenting is about loving your child unconditionally and helping them to blossom into their best self. The mother of a prodigy describes parenting as art, where you have the material and you deal with it as lovingly and creatively as you can. These families’ stories taught me that what I once thought would be unbearable actually isn’t. I now imagine being a fierce advocate for my future child, whoever they happen to be.

Solomon’s book shows us how an intolerant society creates self-loathing people who confuse their identity with disease. We do not need to pathologize all anomalies. Biology is based on variation; it’s how evolution works. We must work toward embracing the differences between us: physical, cognitive, and otherwise. Diversity is not a disease. His work also teaches that at the beginning of life, like the end, just because we can treat something, it does not follow that we should.

We must do better to prevent rape. Love, forgiveness, and hope are the most useful tools for steering people with a criminal history toward a pro-social future. Nearly 1 in 100 Americans is behind bars.

The question is never “is it nature or is it nurture?” Everything alive is a product of genes interacting with the environment. Life is more a matter of nurturing your nature. We could exert less effort on getting others to fit in and dedicate that time and energy toward listening to their story and finding a way to meet their needs.

We must learn to toe the fine line between serenity and complacency.

One cannot be both exceptional and normal. This mindset lets me lean into my weird.

Let grace be both the cause and consequence of your happiness. Because we can’t be someone else, but we can each be better.

Doctors are not heroes

Health is the capacity to do what, and be who, we want.

My father was diagnosed with cancer the day the world was supposed to end, December 21, 2012. It was impossible to tell whether the primary tumor originated from the esophagus or the stomach because of its size. It had spread to his liver in two places. I googled the prognosis. Median survival was 6 months. Dads aren’t supposed to die at age 56.

After the initial shock, I was mad at myself. Why had I not spoken up? He hadn’t been eating as much at meals. I thought he was trying to lose weight. What if he had been diagnosed sooner?

His oncologist informed us that his metastatic disease was incurable. The statistics were sobering: 24 of 25 (95%) with his diagnosis were dead by five years. He could try chemotherapy, to which “about 50% of patients respond.”

As a medical student, I wanted to know everything. I scoured websites, books, and journal articles for anything that might help. Intellectualization had begun. I was going to cure him.

I thought this because I was, at the time, taking a hiatus from medical school and researching the dietary causes of breast cancer. Thus, with my “expertise,” I believed I could make a miracle happen.

My dad showed interest and understanding of what I was learning and recommending. When he couldn’t keep down the first supplement I offered, a vitamin B complex, I should have realized just how dire the situation was. Still, I was convinced he could recover if he ate all of the right things and none of the bad stuff. I was forcing endless fruits and vegetables, but his ability to eat anything was so compromised that he was only trying to get enough calories. The recommendations from the (obese) dietitian at the cancer center were not helpful; they gave the impression she had stock in Ensure®.

His dietary “noncompliance” (a pejorative medical term) angered me. My interpretation: he wasn’t fighting his hardest to live longer for our family. However, he felt he was doing his best.

Trying to heal him had strained our relationship. I regret how long it took to understand this. My father’s oncologist was the best specialist around. Dad didn’t need another doctor. He needed me as his son. I had to accept that I was not going to cure him.

My father never explicitly requested to be treated like he wasn’t really sick. Sure, he wanted to get better, but he understood his treatments were “just buying time.” He really just wanted us to have our lives back. He felt guilty. So, we accommodated by mostly just trying to continue our lives as before.

Several positives emerged through this tough time as a family. My parents’ bond strengthened. We took a couple of memorable family trips, attending a wedding in San Diego and vacationing with friends in Colorado cabins.

I believe my dad beat the average survival for his disease because he was determined to make it to his youngest son’s high school graduation, his middle son’s college graduation, and his eldest son’s wedding- all in May 2014. My father’s body peacefully stopped in our home exactly two weeks after my wedding on June 13th, which was 19 months after his diagnosis.

My family had a very positive experience with hospice care. Never had I witnessed the dying process. We had the opportunity to say the things we never say enough: love, forgiveness, and gratefulness.

The exposure to palliative care prompted me to think more about life and the role of a physician.

Doctors garner a great deal of respect in part due to their extensive education. In order to practice as an independent, community physician in America, the person had had at least 4 years of college, 4 more for med school, plus at least 3 years for residency, and even more for specialists. (I estimate that I’ll be about 35 years old when I get my first “real job.”). This training grants physicians enormous power: to cut out problems and sew people back up (i.e., surgery) or administer potent poisons to shut down renegade cells (i.e., oncology).

How doctors apply their knowledge has changed over time. In recent decades, the American doctor has moved away from the paternalistic notion of knowing what is best for the patient. Now, the pendulum has swung more toward (some would say excessive) patient autonomy, where medication and surgery are offered like sugary dishes on a dessert tray.

Sciences progresses at an exponential rate. Modern medicine can seem miraculous. Hepatitis C is now curable for 90% of patients; I’m sure that you’ve seen the commercials. With such amazing (and expensive) technology at their fingertips, doctors might appear to have hero-like powers. And shows like ‘House’ and ‘Dr. Oz’ illustrate our society’s idolization of M.D.’s.

Doctors are not heroes. The patient is the hero; the physician is their sidekick. What is the definition of a sidekick? “A sidekick helps the hero fulfill his destiny.” [quotation by Owen Suskind (p104 from Life Animated)].

Medical practice should be a partnership to foster the well-being of the patient. Health is the capacity to do what, and be who, we want. But aside from acute emergencies, an authority cannot bestow health; instead, the vast majority of our health is determined by the communities in which we live and by our mindset and daily choices. Health is cultivated within and without.

From my limited clinical experience, most doctors are just trying to help patients live longer with little foresight or insight into the patient’s goals for the remainder of their life. Modern medicine for the severely sick (and their families) is often a process of lurching from one emergency to another.

Understanding doctors as sidekicks provides a paradigm that can be especially valuable for honoring patients’ values at life’s end. Although we have powerful ways to stave off death, the interventions often conflict with the widely held goal of dying at home, pain-free, and in the company of friends and family.

Better care will take time, literally. It all begins with listening. Understanding what the patient values most enables one to serve best. Being honest with our patients about the inevitability and closeness of death encourages them to prioritize and grants them the chance to say goodbye.

These vital discussions would ideally begin at home, before a life-threatening illness strikes. Fortunately, there are many resources available for catalyzing conversations about advanced care planning. When we miss the opportunity to share our end-of-life wishes, it leaves our loved ones strapped with difficult decisions.

We need to abolish the false dichotomy between palliative care and standard medical care. The goal of all medicine is to empower individuals to live as they choose. We would all do well to reassess how we wish to spend our remaining days. Knowing what a good life means to a person only requires asking the right questions and taking the time to listen.

My father hid his discomfort well throughout most of his illness. Not causing concern was a major priority. After the wedding, he lost the capacity to conceal his pain and his herculean struggle to stay alive. Nothing was staying down and he was too weak to wretch. At this point, I told him; “Dad, there’s really no easy way to say this, but it just seems like your body is shutting down and, and… it’s okay to die.”

Although I’ll never truly know, I believe that my dad needed permission to die. I believe he needed to know that he had been a good father, that he had tried his best and always had good intentions, and that had prepared us to be all right without him. Sometimes, that which we need most goes unspoken.

As a future physician, I imagine going to heroic lengths for my patients, but that won’t make me a hero. We can only play the lead role in our own lives.

You, the patient, are the hero. And I will be your loyal sidekick.

We Need More Good Food

Doing what you think is right and saying what needs to be said isn’t always popular.

Originally written June 2013 for Cultivate Kansas City’s Urban Grown Farms & Garden at the Downtown Kansas City Public Library

We live on the border of Johnson and Wyandotte County – at opposite ends of the health and income spectrum. On a smaller scale, juxtaposition can also be found next door. A year ago, I was in the front yard watering when I hollered to my state-farm neighbor, Jake, if he knew what a large, fuzzy plant was. He said, “I dunno, Brando, some type of weed? It looks like the goshdamn nature preserve over there!” That’s exactly what I am going for! I’m working on a front yard of wild beautifuls and backyard of edibles! While Jake is out mowing his well-manicured lawn, I’m tilling up grass and sprinkling seeds harvested from the side of the road.

Now, I love to please people. I genuinely want to make you smile. But I’ve learned that you can’t please everyone. Doing what you think is right and saying what needs to be said isn’t always popular.

As a medical student at KU, I’ve also found this to be true in the clinic. I am now in the middle of my training to become a nutrition scientist. So from a health & nutrition perspective, I have some unpopular facts to share.

First, there isn’t enough good food to eat. As a nation, we don’t produce enough fresh fruit and vegetables for everyone to eat their recommended 5 a day!

I am a hippie. I rejuvenate and recharge by immersing myself in nature. I like to run in the woods, on trail and off-trail; it’s called “bush-whacking.” It’s both a blessing and a curse, because everywhere I drive, I want to pull over and explore the bushwhackable forest! So when you’re driving down the highway and see clumps of trees off to the side, just think, I might be in there!

In a similar vein, all over this city, I see arable land. Empty lots are lost sunlight! Let’s capture the sunlight as edible plants and chew! This untapped potential makes me optimistic about local food in Kansas City. There’s so much room for urban agriculture in KC to grow! (Pun intended).

Second, we have too much of the bad food. Our food landscape is full crappiness. KUMed is on Rainbow Blvd, which houses 7 fast food restaurants between 39th and 43rd. As a new processed food dispensary just opened (7-Eleven), the Rosedale community remains a certified food desert. If we want people to eat well, we have to change the environment. This is where Food is Medicine comes in.

Food is Medicine is a student-lead group open to all at KUMed. We are working to build an environment that makes the healthy choice convenient and cheap. We brought a CSA (community supported agriculture) to campus with Good-Natured Family Farms last year. Goode Food Delivered now supplies and organizes our CSA. We have built a community garden for students to grow and enjoy fresh, pure produce. It has an infantile fruit orchard with berry bushes and 11 raised beds of veggies. This past Spring we established a program called Good Grabs; we bought almost 1,800 pieces of fruit and gave them to students. We plan to expand this next year. Now we’ve set our sights on the cafeteria! Rather than shooting dirty glances at folk walking around campus with soda-sloshing Styrofoam cups and boxes wafting French fries and chicken tenders, we want to change what food that’s offered and how it’s promoted. We have a long way to go; Krispy Kreme donuts are two-for-one after 3pm... We hope to convince those in key positions of power that it’s not only unethical to serve such tasty, cheap, disease-promoting food in a hospital, but it’s bad business in terms of employee wellness!

We are trying to make it cool to be healthy. Like cigarette-smoking doctors are now frowned upon, we hope it will be equally unacceptable to walk around with a McDonald’s bag or a Sonic 44oz. At KUMed, we are trying to shape a generation of doctors, nurses, and other health professionals that to heal others, to improve wellness in the broadest and most sustainable sense, we must start with ourselves. That’s what it means to be a true health professional.

I imagine KU Med as a place that promotes community health with real food, in addition to pills and procedures. That’s our vision. We will know we have achieved our goal when a local apple (when they’re in season) is cheaper and easier to find than a bag of potato chips. What if people came to the cafeteria not because their family member is sick, but because it offers an array of delicious and nutritious food at competitive prices! We are optimistic, winning over hearts and brains one stomach at a time.