While I am training to learn more about advocating at the legislative level, there is something I think is even more important when it comes to advocacy. I firmly believe that laws are helpful, but heart change is what it takes to make a lasting impact.
And wouldn’t you know it – the faith agrees with me! (Well, it’s probably better stated that I agree with the faith on this one!)
“Fighting, and the employment of force, even for the right cause, will not bring about good results. The oppressed who have right on their side, must not take that right by force; the evil would continue. Hearts must be changed.”
This gets to the heart of all that makes me bristle about certain subjects in the Down syndrome community. There is a lot of fighting, a lot of “I know better than you,” a lot of “just love your baby enough.”
That is not heart change, and that’s why it will never work.
Right now, there is a lot out there about this awful 90% termination rate of babies who have a prenatal diagnosis of Down syndrome. (Please note that is not 90% of ALL babies with Down syndrome.) And the main drive within the Down syndrome community seems to be a lot of photo montages of our kids being cute set to beautiful music and a whole heck of a lot of what I call “angry blogging.”
Here’s the thing: we need to get real about living this life. Saying our kids are beautiful, while true, doesn’t do much to address the legitimate, real world concerns of families facing this diagnosis. Beauty is great, but when you’re uninsured and staring down a $250,000 open heart surgery, cute just doesn’t cut it. By constantly presenting a cheery face and a beautiful picture, we are guilty of perpetuating a stereotype that most of us hate – that we are strong, stronger than most, sainted in some way. When we get real, when we own up to the things that are hard, we touch hearts.
Angry rhetoric, accusing mothers who choose abortion of “not loving” their children “enough,” and judging women who do choose abortion – those things do not cause heart change. Indeed, they often serve to only strengthen people’s long-held beliefs and opinions.
Heart change is looking a mom who chose abortion straight in the eye and wishing her peace. Heart change is sharing the struggle but also how you worked through it and moved on. Heart change is being genuine, warm, and kind to those that approach the Down syndrome community with questions, who often use uncomfortable phrases for lack of knowing better.
Heart change is softening your own heart, allowing people to see the struggle alongside the joy, and checking your quick judgment by putting yourself into someone’s shoes.
And it’s what we need to do if we want to put a dent in that 90% statistic or expect legislators to understand why policy changes regarding Medicaid, Social Security, and education are important.
Heart change is the key to spreading the message that a life with Down syndrome – or any disability – is genuinely a life worth living.
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