On Blue Light Bulbs

I’ll never forget that moment.

We entered a major home improvement store as we always seemed to be doing as homeowners. It was early spring and the Autism Awareness campaigns were in full swing. My then pre-adolescent son saw it first. It was a sign encouraging customers to “Light it Up Blue” by purchasing blue light bulbs.

He said, “Look, Mom! They are celebrating Autism.”

His face changed as he continued to read on. The sign said autism was a “crisis.” It explained how proceeds would benefit Autism Speaks search for cures and prevention of autism.

My son understood the word cure enough to know it implied he was sick. He looked at me despairingly and asked why they thought he was sick. I told him what I believe – Autism Speaks is absolutely clueless about the life of an autistic person and people are fearful of what they don’t understand. He looked puzzled. He wanted to know why they didn’t just ask autistic people. I explained how Autism Speaks refused to allow autistic people to have a voice in the organization. He shook his head and said how wrong that was.

Then he asked me the question I feared. What did they mean by prevention? Why would they prevent autism? My head was spinning. How could I explain this to my beautiful, perfect child? I blurted out that they cannot prevent autism because it is not a disease, that this was just a way to get more money.

Though not the full story, I could not bear to tell him the rest – that Autism Speaks was heavily funding research that would encourage families to terminate pregnancies. That they were hell-bent on discovering genetic clues so as to advise families against becoming pregnant. That this heavily funded organization wanted to eliminate people like my son from existence through eugenics. That this billion dollar organization intended to find a magic pill that would change my son into something less than, not him.

My heart sank like a rock into the pit of my soul. My son was devastated and deeply hurt and once again, I could not protect him. We left the store that day without what we came for. And we left with a little less hope for the future of humankind.

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How Not to Abuse the Abused

It’s my day off. I need to get away from this bleepity-beep computer. But more importantly, I need to write something about a situation I have been observing. It is a situation where people are locked in an endless battle because of impositions about how someone with PTSD (post-traumatic stress disorder) should behave (feel, really) regarding a situation.

Imposing values or feelings on someone is a dangerous business if one wishes to maintain any semblance of a peaceful relationship. It is even more dangerous, however, when someone attempts to impose feelings or behaviors on a person with PTSD.

These are some rules I believe we should all attempt to live by in general, but especially when we are interacting with someone who has experienced trauma.

  1. We do not get to determine how someone should behave or feel regarding a situation.

    We get to try to control our own feelings and actions regarding a situation. We can never presume, however, what it feels like to be another person in that person’s situation. Applying our own logic, values, or feelings to the situation is passive-aggressive abuse of a person with PTSD.

  2. Winning an argument is unimportant.

    Every person subjectively views their world. Our memories are tainted by perspective and individual experience. It is a fallacy that there are “always two sides to every story.” There are actually as many sides to a story as there are people who tell it. There is no universal truth.

  3. If someone with PTSD feels harmed, apologize!

    Express real remorse. Even if we did not intentionally hurt the person, the person is hurting. Defending our actions based on principle is going to continue to hurt the other person. So even if we don’t fully comprehend how our original actions hurt someone, continuing to defend those actions are blatantly harmful.

  4. Helping someone with PTSD feel safe is the only thing that matters.

    People with PTSD live in a world that is viewed as threatening. Simple tasks most view as benign or take for granted are considered high-risk situations for the person with PTSD. For example, walking across a large parking lot, though does have some risk, is considered safe by most people. For someone with PTSD, this action can be viewed as an inherently dangerous act. Reassurance in the form of understanding and empathy helps – do it! Arguing that the situation is safe or benign is harmful – just don’t!

I truly don’t know if those who need to see this will. But it is good practice for all of us to follow. Perhaps this can even be applied to the political climates in the world. A little understanding and humility go a long way.