Category Archives: disability

Miracles Abound, But We Probably Miss Them

If you need to be this close to the TV to see it, you just might be legally blind.  K is, but if she is this close she enjoys watching races.
If you need to be this close to the TV to see it, you just might be legally blind. K is, but if she is this close she enjoys watching races.

Recently, my daughter was made fun of at school and began to feel awkward having a water bottle with her in class. “Dad, when will I be able to stop drinking water during class?  It’s bad enough I fart, but I feel them all looking at me when I drink.” The perils of second grade can be hell on emotional well being.

I told her to remember she is a miracle. She has lived through more than most of them ever will. She needs to remember she has lived through 4 or 5 (depending on how some exploration is counted) heart surgeries to deal with her pulmonary atresia, and she had a stroke. She has been sick enough to die multiple times. She has the scars to prove her courage and toughness.  What’s more, she has bowels which aren’t moving food like they should. So she has a choice, either take the chance given to her by multiple miracles and drink the water or let the stupid things thought by 2nd graders rob her of the life she is lucky enough to live.  I told her she is given a chance so many would love to have, but it’s her resilience which will make the rest of us look to her for inspiration.  Then I had to explain “resilience.”

The irony is I ask her to be tougher than I am all the time. I tell her she and her siblings are my miracle, keeping me alive. We called the school to make sure the teacher is aware what is going on and how dangerous it would be for somebody with her heart condition to become dehydrated. We are debating as she enters a new school after our move next fall whether to schedule a class with her new school to explain disabilities and hers in particular.

It is hard to mention people’s lack of ability to see what others go through without pictures of K.  Of course I find it hard to mention “not seeing” without pictures of her.  There is hard to define justice in the joy I take from “looking” at her looking at the world around her.  I wonder what and how much she sees.  Then I marvel at the speed she chooses to live with reckless abandon.

"OK I see a change in the ground.  I don't know how far, but lets jump."
“OK I see a change in the ground. I don’t know how far, but lets jump.”

On a somewhat related but funny vein, O’s class must have had somebody mention Nazis.  He said he was thinking about them again when he heard about them in the Sound of Music.  Then on Saturday morning, he said, “Dad, I think I know why they were called ‘Nazi.’  I think they could not see the goodness in different people.”  I told him he can be very insightful at times, and I was glad for a morning of the thoughtful O (leaving out the “instead of the grumpy O who usually graces us in the morning”).

Cinco de Mayo, Boy Scout style.
Cinco de Mayo, Boy Scout style.
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The Scarlet Letter of Disability and Mental Health

 I usually only write once a week. However, I wanted this out, and I didn’t want to publish it Christmas Eve.  I wanted it out before I forgot, before it no longer had the cultural touchstone of another mass murder.  I wanted it out of me because I feel the weight of the media driven perceptions of all those with mental health conditions.  I suspect I will one day join the ranks of those about whom a generation of perceptions is now being formed.

Illness brings a stigma in our society, a scarlet letter if you will.  In an effort to be politically correct, people feel bad blaming those with obvious physical ailments.  Everyone understands those, or thinks they do.  Still, there is often a perception of special treatment even if it is mitigated by the thoughts that those afflicted made no choice and in fact did nothing to merit the condition.  Because there is a thought it could happen to any of us, we accommodate to the best of our ability. “Do unto others as you would have done unto you.”  We generally act how we think we would like to be treated, when we take the time to think.  It’s only in the initial blink or unthinking comment or feelings of our own merits being secondary to the disabled when we have the resentment so commonly felt by the disabled.
   
The stigma on those with mental health issues is far worse.  People can’t see the illness, only the actions.  There is a fundamental belief/value in our culture of taking responsibility for our actions.  The problem with the mentally handicapped is they often have no more control over their thoughts and actions than the boy born without legs had in his physical condition.  As I see it, the perception of those living in Wellville about being responsible only for one’s actions breaks down here, and with this breakdown empathy and understanding are often lost.

Without empathy and understanding, society is quick to condemn.  “Why would they do that?” quickly becomes society’s cry.  Without understanding, fear and outrage come easily, and the target is unspecified.  Without empathy, why should anyone care what triggered the disturbed?  We care only when we understand and approve of the cause like post traumatic stress from a war experience.  If we don’t know the why, we judge the actions and then from them expand the pattern we think we’ve recognized to any  with a condition we think is similar.

It’s here where the sad media does a disservice to all others with the same condition.  There is so little to help society recognize a different pattern.

Towards that end, I would implore all to break the pattern.  Weave a different tapestry from which future generation can gain insight.  Live out loud and where ever possible let the stories of your efforts and trials be known regardless of outcome.

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