Last night my husband and I attended a concert called One City One Symphony at Cincinnati Music Hall. For the past several years the Cincinnati Symphony Orchestra has chosen one concert a year to facilitate community conversation around a theme. This year’s theme? Speaking truth to power.
I sat in the balcony of the beautifully refurbished Grand Dame of music halls, immersed in powerful music by a world-class orchestra as they played music by three composers who spoke truth to power in widely divergent historical/political/cultural settings.
As I listened, I asked myself, when have I spoken truth to power?
The answer erupted in my chest like hot lava. It slid down my cheeks in hot tears. I’ve been speaking truth to power for 32 years, ever since the birth of our youngest son, Joel. What appeared at birth to be hypotonia mushroomed into moderate cognitive disabilities, an anxiety disorder, kyphosis of the spine, and autism.
Each and every parent of a child with a disability sinks or swims according to their ability to speak truth to power.
We begin with the medical establishment. Let’s face it. Doctors hold a lot of power. It took me longer than I like to admit to grasp the fact that I was the expert on Joel. It was imperative that I speak the truth of what I saw/felt/heard every day as Joel’s mom; that I stand up and use my voice no matter how intimidating, uncaring, or busy a doctor appeared to be. My voice, speaking Joel’s truth, is an integral part of Joel’s medical treatment plan.
We quickly move from the medical establishment to the powerful world of insurance. How many hours have you spent on the phone with insurance representatives? How many letters have you written? How many tears have you shed in frustration? Once again, we speak the truth of the absolute necessity for therapy and medication in order for our children to live full lives. We will not stand for doors slammed in our faces. We shrug off the pain and knock on the next door until we get what we know our children need and deserve.
Before we know it, our children go off to school, and we learn to navigate the sticky thickets of IEP meetings. We find ourselves sitting around conference tables under flickering fluorescent lights, surrounded by six, eight, or ten professionals from the educational establishment. What do we do in these meetings? We speak the truth of our children’s giftings as well as their needs in order to achieve the best possible outcomes for their lives. I can’t count the number of times I cried in an IEP meeting. Embarrassing, yes. But they were tears of anger, and anger is always a good motivator. I was determined that the truth of the totality of Joel’s personality be spoken in those rooms. Because Joel had no voice, I was his voice. His father was his voice.
IEP meetings morph into ISP meetings once our children graduate from school and move into the muddy waters of adult services. Now we’re speaking the truth of our children’s personalities and needs not to the local educational establishment, but to county boards of developmental disabilities. We speak that truth to federal agencies as well, such as CMS, the agency that oversees Medicaid. Once again, we find ourselves attending meetings, writing letters, making phone calls to make sure our children receive the services they need to live meaningful lives as adults. When CMS threatened to shut down farm communities for adults with autism (our son lived on one of these farms at the time), my husband and I found ourselves speaking Joel’s truth to the state and federal government.
What happens if we don’t speak the truth of our children to the powers-that-be? Our children get lost and fall through the cracks. They fall prey to monsters of societal ignorance, governmental incompetence, and corporate greed. Their lives become small and circumscribed by the walls of home and aging parents.
I am so thankful for a husband who stands up with me to speak Joel’s truth to those in power. I am thankful for the health and the energy and intelligence to be able to continue this journey of speaking truth to power. I am thankful that my voice can be a voice for those who do not have the health, energy, or intelligence for this work. I am thankful for the support of people like you. Together, we achieve so much more than we can ever achieve on our own.
May God continue to give us strength and wisdom to continue the work, which is a life-long journey!
I am thankful to the Cincinnati Symphony Orchestra for cultivating this conversation.