Tuesday, May 7, 2013

The Power of Understanding

As the parent of a child with complex challenges, I've been dealing a lot with teachers who think she is "defiant." And, on the surface, that's exactly how it looks: she refuses to join the song circle; bumps into other kids without apology; and won't take direction in the lunchroom.

My husband and I know that none of this is actually defiance. She won't sit in a circle because her body can't hold a seated pose on the floor. She bumps into kids because she's trying to escape the noise level in class. She doesn't listen in the lunchroom because it's hard for her to process verbal directions in that setting.

Believe me, if I thought any of this could be overcome by more discipline, I'd be all over that. I've learned through much experience that consequences and rewards are pointless when my daughter needs something else entirely: understanding.

If we meet her halfway, she can succeed. For example, she gets antsy at Shabbat services, so these days we bring toys to temple and have a designated "dance area" where she can move around and play. She stays there. She loves being able to express the joy in her body.

But all the threats and bribes on earth can't get her to stay in a chair for 30 minutes. She's just not able to sit still like most other kids; it's got nothing to do with being disrespectful. I could kick myself sometimes, remembering all the pointless shushing and restraining I used to do. Luckily my daughter has a fierce spirit and learned to love religion despite me.

It's been through learning how to parent my daughter that I've learned to give much less of a shit about what others think. There is a strong faction that believes kids don't really have all these newfangled "disabilities"--or, if they do, it stems from spoiling or poor discipline.

I think that's deeply ignorant, but I'll be damned if I haven't let it bug me. A lot. Especially when toilet training became a prolonged, ugly mess. We had no idea then that our child's motor skills were delayed 18 months; many well-meaning folks told us we weren't trying hard enough. We finally enlisted a specially trained pediatric nurse, at which point we realized how frustrated our kid had been because she had wanted the independence all along, but couldn't achieve it without the right help.

These days, I realize that no matter how a situation with my daughter looks from the outside, she is a sweet, sensitive child with parents who work hard to provide the extra structure and compassion she needs. We are being the change we want to see in the world. Nothing to be embarrassed about there. 

I think I am especially conscious of other people's lack of understanding because during my years of depression, I inflicted that upon myself. I took a narrow view of the situation, believing that my struggle to get through the simplest activity was a personal weakness rather than a symptom. I brought out my inner drill sergeant when I needed a loving inner parent.

In retrospect, I recognize how tough I was not to simply give up on life. I powered through immense despair, often clumsily, but I did emerge on the other side. However, I only got well once I accepted my depression. Then I could begin to understand it, with openness rather than judgment. Suddenly, taking eight years to get my bachelors degree was not laziness; it was having the right priorities.

People with mental and developmental disorders of all kinds suffer greatly from being misunderstood. This misunderstanding takes many forms: disgust, intolerance, blame, paternalism, impatience. Misunderstanding often leads to shunning and/or punishment, because isn't that what you do to someone who refuses to follow social norms?

Imagine what this does to a person's psyche, day by day. It's a no-win, because they are already doing their best to adapt and cope, but few others recognize this. Soon the person no longer trusts their own reality and stops asking for help. They choose to misunderstand themselves the way others misunderstand them, in a desperate effort to adapt.

As a social worker in the ER, I've seen how understanding can affect a person in crisis. They come in feeling totally defeated, and I point out how strong they really were to ask for help, and how they might harness that strength once their illness is under better control. Sometimes that's the first time they thought of themselves this way. Even if they are too ill to really absorb that message, they feel calmer and, perhaps, a little more hopeful. Someone has honored their mighty inner battle, which on the outside often looks like stagnation or giving up.
Understanding is a profound force, and yet one that's woefully underused. We all rely on personal prejudice, stereotyping, and snap judgments far more than we should. We are guilty of making excuses for ourselves while ascribing the worst motives to others. We draw false comparisons between people, failing to take into account differences in temperament, resources, and sociocultural privilege. 

We are also each shaped by our own experiences; for example, people who were parented in a rigid, punitive or judgmental manner tend to take that approach toward others, particularly if they've never addressed the issues from their own childhoods.

Even without such a sordid personal past, though, everyone is affected by living in a culture that relies on sound-bites and facile labels; a culture that values appearances, conformity, and competition at the expense of understanding.

Unfortunately, misunderstanding creates a society with skewed priorities. A society in which mental health and education funding are slashed while incarceration rates soar. A society in which people are punished for needing help. A society in which it's hard to be "different," visibly or invisibly.

In learning to understand, first myself and then my daughter, I've realized how easy it is to be totally wrong about someone.

For years I was wrong about me, and about my daughter. I pushed us both in the wrong directions, and too hard. I truly think we are in more danger when we insist that we already understand, than when we admit to confusion and ignorance.

Now that our family life is on solid ground, I often wonder just how many "bad" kids who antagonize teachers are really struggling with undiagnosed disabilities. And how many parents think they are failures because their kid isn't learning, or responds paradoxically (or not at all) to discipline. My prayers for a more understanding world have intensified since my daughter's diagnosis.

Clearly, understanding isn't just a touchy-feely luxury for those with the time to pursue it. It is the most transformative force we have in making the world better. Whenever I read about a scientific discovery that negates all previous understanding, I wonder who was brave enough and humble enough to start that ball rolling by saying, "Maybe we don't understand this as well as we thought."

Political, social, and scientific progress hinges on the proper understanding of the people and issues at hand; without this, there is only tragic waste of money and resources. This is why activism from the ground up is so important--whether it be New York City fast-food workers striking for living wages; mental health consumers storming Springfield to point out the enormous costs of "cost-saving" measures; or simply a parent advocating for accommodations in the classroom. 

In the end, individual realities must triumph over generalizations and assumptions. The work of understanding begins between individuals and radiates outward.

It isn't easy to open ourselves to understanding other people, especially when they operate in contexts very different from our own. It takes time and effort. When I am willing to take that time and effort,
I am always rewarded with amazement.

It isn't that a few select people are amazing. PEOPLE are amazing, which is what makes my work and my life such a joy. The poor and homeless clients I worked with in my former job: amazing. The patients I now see in the ER: amazing. I belong to an amazing family and community. Quiet examples of struggle and overcoming, courage and perseverance, great talent and sterling values, are all around me…and all around you. Isn't understanding amazing?


Lisa Sniderman, LCSW received her M.S.W. from the University of Chicago in 2003 and has been a licensed clinical social worker since 2005. She is a past member of ETD's Mental Health Advisory Board and one of our storytellers. Click here to check out Lisa's posts.

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