Thursday, July 30, 2009


Recently I read several blog posts that really got me thinking about special needs children. One was Just a babe with a kid who has special needs by Ellen at To The Max. In it, she talks about attending a conference and telling person after person that her son has cerebral palsy as a result of having a stroke as a baby. She talks about getting "the sympathy stare" and how she had trouble with that because she doesn't see his life as tragic. Many of her readers replied, talking about what the sympathy was for. Sympathy for the extra work involved? For the fact that their special needs child wouldn't every do the things regular kids did? Many ideas were tossed around and most of them seemed to be rejected.

The same day, Once Lucky posted on Where's my white picket fence? about the DNA testing done after her recent miscarriage. She discovered that the baby she'd lost had some genetic defects and that knowledge gave her some much needed comfort. She felt the miscarriage was supposed to happen.

The very next day after reading those two posts, Azaera from Taking It Day By Day joyously posted about her disabled son's first words AND Ellen (from To The Max) posted I think this blog has multiple personality disorder about how just a day after saying she didn't want sympathy, she broke down crying after seeing a boy run into his father's arms.

Finally, this morning Azaera posted Consolation where she talks about no longer taking comfort in the idea that she lost her first pregnancy to a miscarriage that was supposed to happen because now that she's the parent of a special needs child, that idea would imply that her son shouldn't be here either.

(Please know that I'm paraphrasing EVERYONE. No one said those exact things in that exact way. And even if they had, these are people talking about their own lives and circumstances and not meaning to pass judgement on anyone else.)

So... I keep thinking about this and turning it around in my head. And I've come to some conclusions.

I don't know what other non-special-needs people are sympathizing about. But as for me, I think that my reaction ultimately comes from the fact that I'm offended. Not by the person with special needs. But I am offended by the disability itself, that any child (any person!) should be in pain, should struggle to do things that should come easily. I view spina bifida much the same way I would view a pedophile. It is not welcome in this world.

Of course that would imply that I view special needs children and adults as victims -- helpless tragic figures who are weak in spirit or need rescuing. Well, I suppose if I was to be entirely honest, part of that is true. I do see the special needs populations as victims. But I don't view victims as automatically being weak or needy. I am constantly amazed by the tenacity and strength of people who overcome horrendous circumstances. My grandmother survived the attempted genocide of her entire country. She came to America at 14 years old, pregnant and married to a man a decade older who she'd met only the day before the wedding. She was uneducated because her schools had been destroyed. She spoke no English and knew no one other that her husband, a taciturn man who was almost a stranger to her. Decades later I asked her why she had a drivers licence even though she never drove and why she always insisted in voting in every election no matter how unimportant the election was and how sick she was. She told me, "Because I can." That strength, that determination to let nothing stop her... that's how I view victims.

Those with special needs do have my sympathy, but also my respect. And I do agree that no baby should be born with a disability and that a miscarriage can be better than a short life of great suffering. But that's because I abhor the disability, not the disabled. The disabled are like everyone else, I suppose. Some are nice and some are mean. Some are fun and some are boring. And some wallow in being victims while others fight against it with a vengance and perseverance that I can't imagine having.

I hope I haven't offended you guys too much and I promise to hop down off my soap box now and think of something funny.

1 comment:

Azaera said...

Well said. I respect your opinion in it's entirety, and I thank you for posting this.