Why is it so personal?

Most people who get involved in this area have some kind of natural connection to it -- either they grew up with someone with Down syndrome (or another disability), or they have a child with the condition.  This pushes them to advocate for others with special needs, possibly even to the point of adopting additional child(ren) with similar needs.

But I don't fit either of these categories.  I started this journey last year without having any direct personal experience with anyone with Down syndrome.  I have known a few people in my community with various levels of Cerebral Palsy, but that definitely was not what inspired me.

But the things that inspired me should not have made it so personal either.  I became aware of Down syndrome during the 2008 presidential campaign (Trigg Palin), which was coincidentally when I was pregnant with my 4th child at age 39.  The possibility of my unborn baby having a genetic defect was real, and I had to consider how I would handle it.  I decided then that I would not terminate the pregnancy unless there was a truly devastating condition, incompatible with life and/or causing extreme pain and suffering to the child.  However, I was definitely relieved when the results were negative.  During that same general time-frame, my older kids were into the show "Glee", which of course does a great job of portraying characters with Down syndrome and other disabilities.

But although these things inspired me, and made me research Down syndrome more, they are not what truly makes this personal for me.  That would not have made me fall apart in tears when I read stories - both happy and sad - about people with Down syndrome.

So why?

A couple of weeks ago I thought of an answer to that question that feels right to me.

I have one sibling, an older brother who is intellectually as far above the curve as a person with Down syndrome is below it.  Growing up with him, no matter how bright I was - reading early, doing well in school, etc. - I felt hopelessly behind.  My parents did their best to compensate for this, celebrating all my accomplishments and recognizing those areas where I excelled.  But the reality of my life as I experienced it was that I was deficient.

Sounds ridiculous, doesn't it? Should the value of my life be measured by how well I can compete with a genius?  Of course not!  So why should the value of people who develop slower than average be measured by how well they can keep up with typical developmental charts?  It took me many years to truly get that out of my system.  Even as an adult, when I was staying home with 3 young children, I felt acutely aware of being less educated than my peers.  I had "only" a Bachelor's degree (from an Ivy League college...) while they all seemed to have or be working on Master's and Ph.D.'s.  That was when I went back to college myself for my teaching degree.  Not so much driven by the degree itself but by the social marker that it signified.    Even in my 30's, I was measuring myself against others, and judging myself deficient.

These days, I refuse to go there!  Just yesterday I was idly perusing craigslist for teaching jobs.  I saw something that seemed mildly appealing.  Then I said, No, that's not what I want!  I love being able to stay home with my children.  I love having the time to explore hobbies, either with them (through homeschooling) or independently.  I love having the time to work with my older children on homework, or join them on school field trips.  I love having a handful of private tutoring students to keep up with my professional skills, but I do NOT want my time to belong to someone else, just for the social cachet of a full-time job.  I will not be defined by someone else's standards.

And neither should anyone else.

This is personal.