“What is it about what I’ve said that’s upsetting to you?”
There was an awkward pause in our conversation. I looked up to the ceiling, sniffed, and then reached across the kitchen table and grabbed a tissue to blot the tear that had just started to fall.
I tried to talk and paused, my voice breaking. “It’s just…” I started and then stopped again. My face contorted, my lip slightly quivering. And then I managed to blurt it out:
“It’s just that I never had that thought before. Of imagining her like that. Imagining in my mind’s eye Grace all alone in the world with neither of us.”
Her father asked the initial question. He was in town and we’d sat down over lunch for another in series of meetings about our life to come. A life as divorced parents of a now young adult woman with moderately severe autism and intellectual disAbilities, who would leave all her true systems of support in one-and-a-half years.
As of late last year, I decided not to pursue forming Art Tank, the nonprofit social enterprise supporting artists with disAbilities. In a year’s time, I was unable to take the most basic steps in filling out the myriad of paperwork for nonprofit status, though once I got the initial paperwork done, the Volunteer Lawyers for the Arts had graciously offered to usher my papers through the arduous federal process. The social enterprise had gotten underway successfully. I was placing works by artists with disAbilities in luxury apartments here and out of town. More were in the works. But, often the work required hours that I could not sanely keep. For one project the days began at six and ended at midnight. Plus, when I lost my business partner, there were demands for contractual and financial and other expertise I did not have. Meanwhile, Grace marched on to her date of transition from the federal public school system and into the great abyss. She needed me. And so did her art business, which was/is successfully growing and demanding more attention. Art Tank was my fourth and fifth full time job. I created a fully researched platform and a media template for a nonprofit and a successful social enterprise, but someone, not me, will have to take the reins. I believe that will happen.
For the social enterprise, I’m searching nationally for an individual who has the understanding of the disAbility art community—the connections, and the patience, and understanding for all the quirks inherent to working with this special artist population. Such folks are available. Those who understand fine art and what sells in commercial venues are also available, but the combination of the two is a hard find. My former corporate clients want to continue placing the work of fine artists with disAbilities. (There is a difference, not a hierarchy, between various types of art created by individuals with disAbilities and other artists which range from folk, self-taught, naive, primitive, art brute, fine art, and more. Commercial venues purchase fine art. It’s not about anyone’s son or daughter being a better artist, it’s about the marketplace expectation and which artists create that genre.)
Walking away from Art Tank was the second domino to fall. The first fell long ago. As Grace began her transition into adulthood and out of her services of support about four years ago, I woke up to the fact that my adopted state had not changed its levels of supports in 20 years, while every Southern state around us offered better services for its citizens with disAbilities. I’ve met with the state speaker of the house multiple times over the years. We knew each other when she was pregnant with her first-born and I with my only child. The state, in all this time, refused to make our citizens like Grace a priority. Last year, the state legislature considered amending policies to get families off their narrowly defined Medicaid waiver waiting lists when their parents turned 75. And then, they decided better of it.
In the last six months something happened that I could have never envisioned. I fell out of love with Nashville. It was Nashville that kept me here in this backwards state. I loved this city with my every fiber until it reached a tipping point and now has transitioned into becoming like any other urban city. Shiny. Glass. Generic and rude. That’s not the city I so loved. It’s the city that Atlanta became when I lived there for 10 years before moving back here. I was living in Georgia when The Big Peach lost its last vestiges of its Southern soul. And now Nashville, once a decent-sized city with a small town feel, has fallen victim to a developer’s dream. Seemingly every corner of our city is being gentrified. Artists of all genres that made this town the cool that it’s always been, have been edged out of their affordable corners of living and work spaces so that room could be made for a new social class void of respect for our Southern genteel. We’re hip, says the New York Times, ad nauseam. We knew that. So sorry The Big Apple discovered our secret and told everybody else about it. Last straw.
I’m looking to move. Yeah. True. From one bubba state to another. I’m from the South. The bubba state of South Carolina. I can say that. But those other bubbas, the bubba brothers to Tennessee, somehow saw to care more about people with disAbilities than passing open carry and rights to eat road kill. (It’s true. Didn’t make that up.) I love the South. My remaining family members of origin live in both Carolinian states. Grace’s paternal and remaining grandparent lives here, in Tennessee. I’m looking to relocate to another bubba state, and if all goes well, her father will relocate and live/work somewhere within two hours, as he does now. I’ll miss that support if I’m further away, but at least I will have more help.
In one-and-a-half years, if we remain here, my job will become taxi driver, shuttling Grace from one-hour special gym class to the next. That was doable when I was 37 and she was a three-year-old immersed in autism early interventions. But now I’m nearly 55, and she’s 20 and the interventions are a patchwork of entertainment. (I’m tired. She’s no longer little and I’m no longer as young.) She can work, but I’m not sure there’s an employer who will pay for a one-on-one aid. And housing, those opportunities are begining to happen, but how would we pay for 24/7 care? We couldn’t.
So, we’re looking to move where Grace can do what I wanted to create here. Except it’s already created there. North Carolina, alone, has about five versions of Art Tank. I’m tired of trying to invent the wheel, knowing that that wheel won’t have any companion backing that will help parents help their adult sons and daughters live in some form of independence.
Her father and I talked about what it could look like for Grace. We talked about his nephew that will oversee her care when he and I are gone. We talked about finding a situation where she could live without me. And then he said it: “I don’t want to die and have Grace sitting in some room alone in some impersonal facility.” I’d never fully gotten the visual impact of that possible moment. So, in the next two years—when a lot of things could happen, rendering all of these plans void (don’t hold your breath that anything will happening with the bubba’s on Tennessee’s capitol hill)—I’m looking to find a place where she can paint everyday. Go to work in a part time job with the assistance she most likely will need. And have caregivers in a small home with another roommate or two where she will be well tended. We’ll be there to supervise. And then when we’re not, well, that’s the point for moving on. Long before we reach 75.
I recognize I’m fortunate to have choices that many do not. I also know there are those who have and will continue to work dilligently for change for individuals with disAbilities in Tennessee. I continue to applaud them. I don’t apologize for no longer wanting to push the river. I know that many people who read this will not feel this way about Tennessee (most will not have children with disAbilites or be poor and need healthcare). The bubba references are directed to the lack of progressiveness for social change in Southern states. Many people are new to Nashville, as I was as a recent college graduate thirty-three years ago. It will be new and exciting. You will not have known how unique Nashville used to be or maybe even care that you’ve moved to a state devoid of social conscience. Many still love it here. The bones of our Southernness will always remain. Our flesh has become something else. And, if you are reading my blog for the first time, I am not generally this negative. This is a time of painful life transition for me on almost all fronts. But, I know that I am not alone in all of the various sentiments I have expressed. These are my views and my experiences. My truth.
