Wednesday, September 21, 2011

A Declaration

This past week I read a comment thread on Facebook that really bothered me. It started off with a mother saying how hurt she was that someone had stared at her disabled child. And from there on a whole slew of parents-of-handicapped-children (PHC's) joined in saying how rude people are and how people are jerks and how in this day and age there is just no compassion for disabled people.

Excuse me?

Out of the entire history of the world I am quite sure there has never been a time as wonderful as right now. I have a child with severe brain damage - and in the past it would have been expected that she be placed in an institution (though I'm quite sure I never ever could have/would have done that), but now - in this day and age - children like Elisabeth are given an education and therapies and opportunities.

It is so wonderful! And I find myself thinking each and every day how grateful I am to not only live now, but to live here - in the United States of America. How can any of us complain?

Yes, sometimes people do look or stare. But why is that a bad thing? Why is it immediately assumed that people are looking down on your child with disgust? (And yes, this is what the mothers in this particular comment thread were saying). It is okay for people to be curious about children like Elisabeth - it's human nature to wonder. And I just don't see how that is so wrong or bad.

Another comment that I read stated how they 'wished people would ask about their child rather than just stare'. But from what I have observed over the course of the past 4 years (the 4 years that I have been a part of the disabled community) that is not a simple task. If a stranger or acquaintance - or even a friend - asks a question, it is expected that they ask the right question, and that it is stated in a politically correct form.

For example:

I have read how someone should never ever say 'what's wrong with your child?'. Oh heavens, if you do there's a good chance you'll get an earful. Rather, it would be more politically correct to say 'what's your child's diagnosis?'

But it's all so silly really. Why must we play these games? If someone is asking about your child, they are doing it with good intentions; because they care. So why make them feel bad when no harm was intended?

And - taking it a step further - why does it matter if someone says, 'what's wrong with your child?'

What's wrong with the word wrong? Why are PHC's so afraid of that word? Because the truth is that there is something wrong. Take Elisabeth for example: her brain did not develop the way it was supposed to. She cannot walk or talk or eat. So therefore, there is something wrong with her. And that's okay. That does not lessen her value as a human being. It is simply a fact.

I would encourage all fellow parents-of-handicapped-children to stop playing these games; stop worrying about how someone asks a question and start being glad that they did ask a question. Be excited to share the story of your child. Help spread the joy that comes from knowing these blessed little spirits. Instead of taking offense, take the opportunity to give a warm smile to a passerby on the street. Help them to know that it is okay to wonder and furthermore, that it is okay to ask.

And please, oh please, instead of dwelling on what-might-have-been, choose to dwell on the miracles that are.

[My miracle.]
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