I would like to confess to you a recent realization: I am the product of Special Needs Privilege. You’ve heard all kinds of privileges being thrown around as accusations lately, but this one is probably not at the top of the list. However, I’m now fully aware that such a thing exists, and I’m one of its victims. Over the past 16 years as a special needs mom, I have operated under the assumption that I have it a little more difficult that most. I assume that because people tell me so. I look around and see that I’ve gotta work a lot harder and longer than the other moms I know. Our challenges are extraordinary compared to the other families on our block, in our church, around our community. But I’m operating under the mindset that comes from Special Needs Privilege.
Special Needs Privilege is what happens when one of the top geneticists in the country delivers your child’s diagnosis. It’s how you process information when a renowned neurologist checks in with you every six months. At the pinnacle, you find yourself on your millionth visit to Disney World enjoying the Disability Access Card so you can skip all the lines. Special Needs Privilege “worries” sound like this: He cant chew steak, so I have to make him a different protein when we bbq. Which velcro-closure shoes will be easiest for him to don? Should we include a urinal in his bathroom when we remodel the shower? As much as we may think having a special child is difficult here in the US, it’s really not. That list I just threw at you is almost embarrassing. All of our basic needs are met, we are comfortable and complete in every thing we need. I will admit to you that I never even considered the alternative, until I met Heather Meyer Gabaud of Footprints of the Son in Haiti. Heather heads a ministry outreach and school for special needs children and their parents in Haiti. Yeah, let that just sink in for a minute: Special Needs Families in Haiti. ( I could burst into tear just at that thought).
What if I had to fret over clean water for Nick each day? What if my precious son slept on a mat inside a home built with twigs and mud. Do you know that our biggest concern during Hurricane prep was making sure Nick’s ipad battery was fully charged? The parents whose children attend Footprints of the Son school had very different hurricane prep concerns. Will our house survive? Will all of us survive? Will we find food afterwards? I’m not guessing at these things, or exaggerating for effect. I saw the photos of the families being notified that a storm was coming. The Footprints of the Son volunteers went door to door because their students didn’t have the Weather Channel playing round-the-clock on their flatscreen TV. You get the picture.
I’m not condemning my privilege at all. I thank God for where I am and how I get to raise my kids. But I must allow myself to be moved by this truth, acknowledge how blessed I am, and be aware of the responsibility that comes with my privilege. After spending several months studying the writing of James, I can tell you his entire letter (the whole book) was about recognizing our “privilege” as followers of Christ, and sharing it with others. Not simply sharing it through words or philosophy, but through ACTION.
But whoever catches a glimpse of the revealed counsel of God—the free life!—even out of the corner of his eye, and sticks with it, is no distracted scatterbrain but a man or woman of action. That person will find delight and affirmation in the action.Anyone who sets himself up as “religious” by talking a good game is self-deceived. This kind of religion is hot air and only hot air. Real religion, the kind that passes muster before God the Father, is this: Reach out to the homeless and loveless in their plight, and guard against corruption from the godless world. – James 1:25-27 MSG