Be The Change

So Gandi tells us to “Be the change that you wish to see in the world.” Ok, I can get on board with that, but what if you’re busy or exhausted or discouraged? What if you’re already making change because in the regular course of raising a child with a disability you’ve made noise in the education system, you’ve argued considerably with insurance, and you’ve taken the time to educate medical professionals? What if, among other things, you’re growing a baby which is the energy equivalent of climbing Everest everyday; or what if you’re looking for a job because you’re relocating at least in part because you believe it’s best for your child?

You get to sit out, right?

Wrong. These are exactly who the change-makers are; the ones who are most intimately effected by some cause. These are the voices we need to hear to attach faces and stories to impersonal decisions.

The internet has been alive with stories about the Speak for Yourself (SfY) app being taken off of  iTunes by Apple because of a patent infringement lawsuit between SfY and PRC/SCS. These two companies will have their day in court to protect their respective businesses, as they should. However, unless you know, have worked with, or are raising a child with communication issues, you may not understand the value of this app. It’s hope for parents, a voice for their children, and a window into their lives. Without the human interest part of the story, this court decision would be based on incomplete information. To that end, Maya, Schuyler, and Robert, three kids who use this app, have filed a motion to intervene in this case. They are not representing either SfY or PRC/SCS, rather, they are seeking to inform the court that pulling this app would cause irreparable harm. Silencing a child, taking his or her voice away, closing them off from their families and communities – irreparable harm indeed.

Aidan does not use this app, nor does he use his particular communication app with the clarity and finesse that Maya, Schuyler, and Robert do. Instead, Aidan’s wheelchair has become his major form of communication. I know that’s really hard to understand until you’ve seen him. Aidan drives right into his super fun speech therapist’s office even when she’s not there; he drives over to the cafe section of our big box store first knowing Mama don’t shop without iced-coffee; he giggles as he chases after his big brother with his tricked-out wheels. If I stop for a moment to consider the possibility of someone taking that away from him, my heart races a little faster and I can feel my claws come out – don’t get between me and this life-changer of a ride. So, I understand where these parents are coming from.

Most of the change we’ve seen in Disability World has been driven by parents and people with disabilities. In my neck of the woods, it was parents who fought for the closing of Laconia State School and paved the way for people with disabilities to be part of their communities; the Katie Beckett medicaid waiver exists because one mother knew it was better to care for her child at home than to leave her in a hospital long term; special education law can be traced back to a boy with Cerebral Palsey who deserved to be educated with his peers.

I wish these parents could sit it out; I wish they could focus solely on their children and rest easy believing that the other pieces will fall into place. But I know they can’t, they know they can’t, and on behalf of their children, they won’t be silenced.

So I stand with them, hoping that when I’m called, I will push through the frustration and exhaustion as they have, to be the change my child deserves.

*****

To read the court petition go here

To get a better understand of this process read Dana’s post here

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5 thoughts on “Be The Change

  1. This is one of my favorite quotes. But my world was rocked when I heard a sermon about it. The words are BE the change. Not DO the change. It is about how you ARE, not just what you do.

    So, I love that you are fighting, writing, raising awareness and not settling for this injustice. But please know that just in who you ARE, you are also being the change you wish to see. And I love you tremendously for it.

  2. Thanks for this…and for all you do, yourself. As a mom of a special 14 month old little girl with DS who has survived four major surgeries in her first six months of life with more strength and happiness than many people demonstrate in their whole lives, I admire Maya and her family and so many others. I’ve become aware of them because of our daughter, and I am amazed and awed. I have claws that come out for my daughter and other children, and love and admiration for all the parents and loved ones. Our world of special needs is truly special because of people like you. Thanks for standing tall so those of us newer to the hurt and frustration can learn to do so too.

    • Padgett – Thanks for stopping by and yes, this special needs community is powerful and encouraging. I hope you find what you need to keep on keeping on with your daughter.

  3. Pingback: Be The Change – Part Two | Team Aidan

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