The Real Meaning of Pity

Why you shouldn’t pity me because my son has autism

“The question is not what you look at, but what you see.”  Henry David Thoreau

Abstract painting
The B side: Coneflower, by Valerie Montague Fine Art

In my teens, I used to see a boy at the beach twirling a straw in front of his eyes while mumbling to himself, always in his bathing suit and flip flops. He had autism, I was told, and all I felt for him and his family was pity. Years later, when my son Diego was 3 years old and I had no idea that he would have autism, I bumped into an old acquaintance with her two toddlers, one of whom was in a stroller and clearly had Down syndrome. I felt very awkwardly sorry for Laura and her little boy.

I was also with my two children, who were around the same age as hers but seemed perfectly typical. I am certain our encounter would have played out differently had both of her children appeared “normal” too, or had one of mine also had a visible disability. We would have talked about activities, preschools, therapies, bedtime routines, etc. But how could we, when all this stupid young mother (me) could think was how “awful” it must be to have a child with Down syndrome?

After raising a child with autism, I recognize my feeling of pity during that bump-in with Laura but see it in a new light. I know now that pity is a strange & misunderstood emotion. It stems mostly from compassion, but it also involves a sense of relief and a chance to feel fortunate at the expense of the pitied.

For example, we don’t just think “How hard it must be on that child’s parent. I wonder how I could help,” We also feel lucky and relieved to have “normal” children — to have been spared, so to speak. The pitied person knows this, even if we say nothing, as most people can perceive when we feel sorry for them or their child. The whole situation becomes awkward awfully fast, especially when evidence of the contrasting situation is right there.

The inaccuracy of my perceptions is now obvious. Today, I view the parenting experience a bit like that of Saint-Exupery’s The Little Prince with the rose and the fox.The Little Prince Book

The Little Prince had a rose that he loved and thought very special because he believed it to be the only one of its kind in the universe. When he comes to Earth from his tiny planet, he discovers that there are hundreds of flowers just like his rose — a realization that utterly devastates him.

To the Little Prince’s salvation comes a fox, who opens his eyes to see why his rose is indeed special–as you care for another being, it inevitably becomes unique to you, and so does everything connected to it. With great clarity, the Little Prince realizes that his rose is truly the most important in the world TO HIM, because it’s the one he cared for, that gave him trouble, and who depended on him for love and survival.

Planet painting
Cosmos, by Mariacem

What the Little Prince discovers resonates intensely with me. I loved both of my children from the moment they were born (and before that even) and have loved them more each day. All the worries, heartache, and exhaustion  have enriched my love, just as much as the fun, pleasant and magical have.

At the end of the chapter, the fox shares this secret: “One sees clearly only with the heart. Anything essential is invisible to the eyes.”

When I pitied Laura and her son, I was only seeing with my eyes, and all I saw was Down syndrome, which to my past (more) ignorant self, meant mostly heartache.

When people pity me because of Diego’s disabilities, they likely see mostly with their eyes, which is the more superficial view. Diego is certainly different and very high maintenance –that they can see. They cannot, however, imagine how noble and loyal his affections are and how pure his thoughts – all of which his loved ones see every day.

I don’t know if there is a right way to respond to or convey pity. I certainly don’t think that we need to be self-conscious about it either. I just know for certain that our first reaction is usually superficial. Even today, pity is sometimes my first reaction when I encounter an unfamiliar situation that appears difficult to me.

Last summer, while visiting an aquarium with Diego and his friend (also with special needs), I saw the tallest women I have ever seen in person. I caught myself feeling sorry for her. “How hard it must be to find the right clothes, the right furniture, to live in a world not designed for people that tall. I’m glad my height is average.”

Very likely, she thought to herself, “Poor lady. Imagine taking care of two young men who talk to themselves, make weird sounds and behave so strange! Thank goodness my kids are fine.”

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Do You Want Yourself Or Your Kids to Be Happy?

How we often confuse our happiness with that of our children.

Happiness at sunset
Diego: happiness at sunset

I just want him to be happy and healthy. I just want him to be a good person. Isn’t this what we often say about our children? I used to say this about my sons Diego and Andres while Diego was still “normal” without giving it a second thought.

These statements are half-truths that we complacently believe until difficult realities kick in. Most of the time, what we truly mean is this: that we just want them to be happy, good, AND to walk, speak, read, cut with scissors, swim and maybe ski or play basketball; to be able to use the toilet, shower, knot a tie and make appointments; to get good grades and go to college; and to have the right friends and hopefully a family. 

There’s no end to what we strive for in our children.

Had I truly been at peace with Diego being just happy and good, I would not have felt so much fear over the years. Before Diego turned 2, I feared that something was off, and I had my first taste of panic when his preschool teacher called to explain that she had “concerns”.

Was Diego happy and good? Absolutely.

I was crushed when the psychologist confirmed that Diego indeed showed developmental delays, and when he was eventually diagnosed with PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified), then Autism Spectrum Disorder (same thing, different terms), then intellectual disability, and a few other labels.

Still, he was happy and good.

My stomach would churn and I had to excuse myself to go to the bathroom every time Diego’s special education program review was about to start. My throat would become dry and I would sometimes feel dizzy when I read testing results that showed the depth of Diego’s challenges and that incontrovertibly screamed that we were not dealing with “delays”.

Clearly, though, unhappy he was not.

By then, I no longer said that I just wanted Diego to be happy. My decisions were not based on any real consideration of the general meaning of happiness or what it may mean for Diego. Fear, in large measure, sustained my denial and stupid conviction that he would at a minimum grow up into a very quirky, yet college-educated, independent adult — as if any other outcome would doom Diego and us to a life of grief.

Now that Diego is a young adult, I ask myself: Did I actually think that going to college and being independent was the only way for Diego (or anyone else) to have a shot at experiencing happiness? I don’t think I was that obtuse. I now realize that I wanted these outcomes more for myself, for my own happiness. I sought what Daniel Gilbert calls “natural happiness,” the type that society favors and that results from getting what we want.

Also, I feared an unknown kind of future and I feared failure, regret and guilt — feelings which are not exactly compatible with happiness. For a long time, my success as a parent depended on Diego reaching the expected outcomes of the world I lived in, those that we can check off, measure and compare. Hence my frenzy to devote any amount of effort to Diego and his needs.

What if this or that therapy made all the difference? We had to try and, if we failed, at least we would not regret not having really, really tried. So we did try a lot of stuff. I took Diego to hours and hours of (mostly) proven therapies. We tried biomedical protocols: intravenous B12 injections, chelation therapy, secretin injections, and more.

Diego did not “catch up” though. Yet he is happy, and his heart is pure.

I see things differently now, of course. I believe that I made many good decisions as a parent even if I made them partly for the sake of my own happiness. In particular, some of the expended efforts helped Diego access and discover more of the human and natural worlds that fascinate him. However, I am glad to have gained a little bit of wisdom because living with fear, guilt and a relentless pursuit of “normal” as a requirement for happiness is destructive and no way to live. Diego is just 25 and I am twice his age. Both of us hopefully have a long life ahead still.

Also, it turns out that this damn pursuit of happiness is more problematic and confusing than you would think. Happiness is a moving target – even when we get what we think we want-  as another recent experience made me realize.

 A few months ago I got a call that Andres (my “typical” son) was in an ambulance on his way to Bellevue Hospital in NYC. He had fallen and hurt his head. There was a lot of blood, a seizure and loss of consciousness. During the one-hour drive from Connecticut to the hospital, I almost made my husband crash as I writhed in my seat and loudly begged God for Andres to be alive. That’s all I wanted — for him to be alive when I got there.

He was alive indeed! Did this make me happy? Almost euphoric actually. But my happiness requirement shifted to desperately wanting him to be able to “make sense,” that is, to accurately answer all the basic questions the medical staff and I kept asking him: Where are you? (New York, NOT Caracas). What year is it? What’s your name? Who am I? (He would say Daniella, my name, but could not say whether I was his sister, girlfriend, mom…). Once Andres was nailing all the questions, I indeed felt happy, yet the target shifted once again to needing him to be able to walk, then to read, use the computer, and so on…

Unhappy mother
That’s me upon arriving at Bellevue
Man lying in hospital bed
A few days after accident
Young man sitting up in hospital bed
Six days after accident
Man standing on a rock ledge
Two months after accident

As it turns out, Andres made a full recovery, and I am so very grateful and HAPPY. But does this mean that I would have been forever unhappy had the outcome been different? How about him?

I can’t speak for Andres obviously. In my case, however, I know that long ago I would have said, “Of course I would have been unhappy forever!” Today, my hard, honest answer has to be: I will never know for sure, even if my happiness would require my acceptance of an a priori less desired reality and finding a new path within it.

I now believe in what Gilbert calls “synthetic happiness,” that which we are capable of creating out of our actual experience, even if that experience is not what we had wanted in the first place. We don’t always realize this capacity for synthesizing happiness, but we do so more often than we would think possible. And the best part is that this happiness is just as real as the natural kind.

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