Thursday, March 20, 2014

World Down syndrome Day 2014--Still Outraged

Okay so I lied. Well not really. The blog domain ends on March 27th and with it ends Green Tea Ginger. But she's still got one last post in her. Tomorrow is World Down syndrome Day. My second one. Last year, I responded to the accusation that I was angry, too angry. Too outraged. And I spent a whole year addressing why I was outraged. I regret nothing as they say. After all there was so much to be outraged over, and there still is so much out there. Of note this year is the murder of Louis Ruiz, a beautiful baby boy who happened to have Down syndrome. His mom murdered him under the guise of ending his suffering. Already so many stories show her as being an angel of mercy. After all our kids suffer right?

Maybe not so much. I mean, all of us suffer at some point. I suffered horrible gall bladder pain a few weeks ago and had to go to the ER. No one suggested I kill myself, or maybe my husband would be a saint if he put me out of my misery. No one said if he did kill me we could blame it on his ignorance about gall bladder issues. I know it seems I'm making light but I'm really not. Most of us at sometime will suffer pain, likely quite a bit of it over time. Some of us will get cancer. Some of us will get into accidents that might lead to life long bouts of pain. We will suffer emotionally from heartbreak, depression, anxiety. But the idea that we should be murdered for these things strikes most of us as quite horrible. And it's really the same for me when I hear someone describe the murder of a child with a disability as a mercy killing.

This year WDSD 2014 is focusing on health care or more precisely access to health care for those with Ds. It strikes that me the theme of suffering is actually very relevant to this year's topics. When people are seen as suffering anyway, there is often an attitude that one shouldn't give them as much health care. Why bother after all? There are too many stories of people with intellectual disabilities being denied transplants simply because of their ID.  Of course there is also the problem that Down syndrome is seen as a disease (it's not) and thus is associated with suffering. We must continue to be outraged over these wrong ideas, these ideas that quite literally kill our children.

While I can't speak for the whole community of those with children with Down syndrome (nor do I wish to be that voice), I can speak about my life over this past year. You see there has been very little suffering. Well R has suffered a bit over losing her place as the baby but I suspect the new found joy of having her very own BBF is easing that suffering.

Last year, I spent the first few months feeling very raw but I never felt like I was suffering. Neither was Jude. She was a thriving happy baby just like the rest of my babies (well maybe a bit happier than poor colicky beastie boy). We were working on that relationship, the one between a mom and her new baby. Note not on the one between a new mom and her "disabled baby." We were busy falling deeply in love. I felt raw because I knew what others thought about people with Down syndrome, and that new love that was taking root made me want to punch the world in it's big ableist face.

But throughout the year as I fought back against so much bias, I was also living my life with my family. There was precious little pain involved. We had our good days and bad days just like all families. There was so much joy. There were walks in the summer sun. Pool days. There were library visits. Dinners out. New foods to try. Birthday cakes to eat. Christmas presents to wonder over. We were drunk with love so much of the time as we always are in my little family. And one day I woke up and I no longer felt raw. I felt bad for all those people who had the audacity to pity me and my family. I felt bad for all the people who thought we were suffering.

Now let me be clear. I am still outraged. Still angry. There's so much to work to be done to make this a good place for my beautiful, perfect daughter to live. We need change, and we needed yesterday. Children are dying people, and we must address these grave injustices. I urge you to join in the fight. Speak out against those who abuse people with disabilities be it individuals or groups. Call your senators about the Able Act. Fight for health care for all. Treat people with disabilities with dignity. Check your own privilege. And remember that those with disabilities are not alien. They are as much you as you are them. We are all humans, all living beings, all creatures worthy of life.