*mentions of my husband are done with his full permission
My heart has been cracked open this year – raw, exposed.
In the early days of COVID-19, Barton and I sat on the back porch listening to the silence, recovering from the arena that 2019 presented. I stood out on the front porch at dusk and the universe was so still.
Now, everyone just wants to get back to normal.
For us, there is no normal.
Particularly for people impacted by disability, there will not be normal for a very long time, there may never be a normal.
We do not know when we will:
- Get on an airplane since Barton has to use an aisle chair to get on the plane. We don’t even know what airline travel for people with disabilities will look like in the coming years.
- We will likely never have a personal care assistant, at least not for several years. This is particularly challenging in the event something happens like when I had surgery.
- Go for a walk – social distancing is nonexistent here and the first time we took a walk we passed a family who took up the whole street horizontally. We couldn’t find a clear path home.
- See family again, as none of them are in NC.
- What nourishes us – In-person martial arts class, yoga class, workshop, event, concert.
- The perks – Go to the grocery store, pick up take-out, go have coffee, have a dinner date-night.
We are ever thankful for having work that supports us and being able to work at home, and some of these changes will shift how we live going forward.
Barton is a risk-taker. To the heart, always.
While he flies off the mountain top, it’s always for a reason – to be independent, to prove someone wrong, to obtain a goal, to go after the hunt, full on. We still don’t know how to define what is a reasonable risk in this environment. And then, protective measures have been divided between lines.
Human culling is acceptable.
This has been the most upsetting to me personally, to know that my life, Barton’s life is disregarded because of the vessel we embody. That, humanity, for as many inspirational and good-natured people, we are no better than any other species –leaving each other to die.
I have been searching for what the new path may look like, how to find movement in my body and soul again.
And, the murder of George Floyd at the hands of police cracks open generational layers of grief, exposed nerves, and action to the surface.
Advantaged, the only way I can relate to the systematic oppression is to be a witness to my husband’s journey. When we lived in AL, I watched him calling to prospect for work. Most people on the line thought he was drunk or dumb. Over and over, he was passed over for work, or his projects are the first to get cut. Even as recent as December, the feedback received was not on his leadership, but on his language.
Talk clearer. Annunciate more. Talk in shorter words and phrases. In fact, you don’t have to use words at all.
So often if I am with Barton, people look at me to interpret. While we play with this dependent on the situation and people, I am a crutch people use. But then the luminous connection gets tangled in me – so now I remove myself as much as I can, to allow people to sit in uncomfortableness. If they don’t take off, the discovery of new ways of connection is mind-blowing.
Talk about diving into deep listening and the beauty of slowing down.
But, most of the time others blow Barton off.
It’s something he will likely never overcome in this lifetime.
No one asked him who he wanted to be when he grew up, his high school counselor told him not to apply for college, doctors told his family to put him in an institution. Thank God for his family who found other ways to push and help Barton thrive.
And – while there has been historical violence for people with disabilities, such as institutionalism and Eugenics, and systematic abuse that can occur from personal care assistants, practices that continues to this day, we have not experienced personal violence as an every-day occurrence.
A few years back, when Barton was on a major road, the top to his wheelchair joystick fell off into the middle of the road. While he asked someone for help, they only called the police. The police came, and while they eventually put his joystick on, they would not let him go. They walked with him all the way to his meeting. While humiliating, upsetting, and feeling restricted, there was no personal violence.
We must all take the veil off and look at what we have done to each other, the violence we have done and are doing to each other.
With a policeman on his neck, a black man calls out for his mother, as the world watches his last breath.
Creating a Container
I identify as a woman, a white woman, a wife, a working woman who supports her family, a wife of a man with a disability / perceived challenge, having an invisible perceived challenge. A childless not by choice woman. A holder of space, healer. A truth-teller, storyteller. Names gifted to me.
We need containers to get messy, to not say it right, or do it right – a place where we can get messy without traumatizing or re-traumatizing others. Where the work can be done to go to the depths of the soul and emerge holding the internal and external spheres.
And in a communal effort, dive deep into this work and create a new philosophy, culture, a new way.
I am still searching for the community where I can do this whole-heartedly.
Family Lineage
I hold the lines of two white Methodist ministers, one in north Alabama, one is south Alabama who supported and were actively involved in the Civil Rights Movement. They walked on the March in Selma, AL and worked with Dr. Martin Luther King Jr.
To find a piece of propaganda with my grandfather Hunter’s name with a red circle and mark through it. To find an original transcript with discussions around the Methodist’s Church response to the Black Manifesto (I only recently learned what this was), and how to support multiple communities while remaining non-violent. To see hope fall and their place in the Civil Rights Movement lost when Dr. Martin Luther King Jr. was assassinated. I read the last Chapter of Powers McLeod, “Southern Accents, Different Voices.” and wept at the words that resonate so profoundly today.
Families, generations, impacted in complex ways. While one side of my family, much is known and preserved, on the other, very little is spoken, the impact so great. While many of the stories are lost, and some preserved, I am re-learning, re-engaging with my family history. Boxes sitting in the closets opened. Shining a light on words that remain.
To know who my people are, and how best to support our communities going forward.
And… it’s a cop out. It’s easy for me to say my grandfathers did the work. What work am I doing? What is my impact? There is an opportunity to re-engage with my family history and to look at my own work, belief, tendencies.
Exploring a New Way
With so many strict boundaries related to COVID-19, particularly in our case, I have struggled with how to best support the community.
December was a huge blow – the opportunity to stretch a whole leadership community, who is looking to be more inclusive. Generations of leaders could have been cracked open, stretched, in ways unspoken here.
We failed, and bias won out.
And while we don’t know what it is, there is another way.
Barton has taught me – there is always another way.
My voice scares me. My values of integrity, trust, and respect are so high, it’s challenging for anyone to meet them. And when I call something out, my voice is shaky and unrefined.
I know and accept I’m not going to be perfect. And yet, how important it is to allow my voice to speak, to give permission to myself to be messy, open, and vulnerable.
It’s important to me to lift up voices that are moving us all forward. And, to share the impact to organizations that have gone back on their mission statements of openness and inclusion. This one is hard for me – I want to give everyone the benefit of the doubt, continue to keep every line open. And the sacrifice, I have kept my mouth shut when I should have said something.
And at some point, you have to accept that even if you’ve done all you can do, sometimes the gates are shut, the lock turned, and there is no way in. This is where my heart gets broken the most.
2020 is not an event.
It’s a way of being, coming into a new way of being.
There will not be a normal.
We are all impacted.
We are all working on how to heal after cracking our hearts open.
There are many resources in nurturing ourselves and supporting our communities.
Below are a few links that have helped me along the way:
On Being Interview – Resmaa Meakem (Unedited version)
https://onbeing.org/programs/resmaa-menakem-notice-the-rage-notice-the-silence/
Jackie Dove-Miller
https://www.facebook.com/559660004130750/videos/1386056451603588/
Tara Brach
https://www.tarabrach.com/
Brooke McNamara
https://www.brookemcnamara.com/
Jaki Shelton Green, NC Poet Laureate
Jaki has many interviews and spoken word pieces, here is only one of them.
https://www.nextavenue.org/poets-commemoration-of-juneteenth/?utm_source=sumome&utm_medium=facebook&utm_campaign=sumome_share&fbclid=IwAR3zbUTskUkYIYtwPnT7JVDx5iZitxohG56FjD9G4042TCRCnAtm6f4ifdQ
Brene Brown
https://brenebrown.com/unlockingus/
This is me, raw, unrefined, for a poetry workshop I’m taking with Brooke McNamara. However, I would say that there are many more who need to be heard.
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