A Hard Truth

Something happened last night that I just can’t quite shake.

Actually, two somethings happened.

I’ve said on several occasions that I don’t want my blog to be political, so I’ll keep this first thing short. We went to a state budget hearing hosted by our representatives and I gave a testimony about the importance of special education and later briefly mentioned that any changes to Medicaid should be done with feedback from Medicaid users. There was also testimony from several other people who represent a different part of the disabled community.

It was absolutely heartbreaking to hear the callous replies and know that Rowenna wasn’t really being seen as a person, just a burden. Now, I’ve known for the last 10 months that this attitude was out there. (Read the comments section of any online article pertaining to any sort of disability and you’ll get a pretty good feel for the hatred people feel toward the disabled community.) I thought I had steeled myself for the possibility of someone basically writing Rowenna off – and being willing to do it to my face.

But yet there I was, literally shaking in my shoes to watch my representative completely avoid eye contact with me and blow off my concerns for my child’s future education and current insurance situation because, gosh darn it, we have to balance that budget.

So that was pretty awful to feel for the first time. I was up almost the whole night turning it over and over in my head, wondering what it is about my child that people find to be lacking as a human being and a person unworthy of education and good medical care.

At the same event, a mother of a child with undisclosed special needs testified that the special education and Medicaid systems in our state are full of fraud and the reason why our state has a budget deficit. (Yeah…if the state was spending $3.5 billion on special education I’d have nothing to complain about, but I digress.) She said she thought the state was spending too much money on her child for schooling so…

She put her child in an institution.

My mind is still reeling. I know there is more to this story, but that was what she chose to share with this group of fellow citizens and state representatives – that she had done a cost-benefit analysis on behalf of our state and decided her child would be better in an institution where he wouldn’t waste taxpayer money. I hope beyond hope that there is so much more to that story. Placing your child in an institution is a heart-breaking choice, and I hope beyond hope her decision actually had nothing to do with her cost-benefit analysis.

She came up to us after the event to reiterate her point. She told us to question everything the school tried to provide for Rowenna and told us to turn things down because they were wasteful. It’s hard to imagine a school district “wasting” money on special education. In fact, it is often the first thing that sees cuts.

I learned a hard truth last night. I learned that not all members of the special needs community will work for the betterment of the special needs community. I learned that some will actively work against the good of our community.

It is mind-boggling to me that someone would actively try to roll back what decades of mommas have done before us. It is mind-boggling to me that someone would reduce their child’s care to a financial analysis.

Advocacy already felt like an uphill battle. Now it feels like an absolute mountain. To think that I not only have to turn the hearts of people who have no experience with Down syndrome but I also have to turn the hearts of people who are already walking this path with me…it’s down right demoralizing.

Let me be clear: I completely understand when parents choose not to actively advocate. I know not everyone has the desire to stand up in front of a room full of people, stare down a panel of elected officials, and demand answers. I completely support the choice of a parent to not be a vocal advocate. I firmly believe that the majority of parents advocate in their own way. Not everyone needs to testify.

But what is deeply saddening is the idea that someone would go so far as to work against what advocates have done. It took years for special education and therapy services to reach this point. Our kids need these services and they deserve these services.

So, it’s a hard truth to learn but better now than later, I suppose. Definitely something to think about for a while.