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25 til 31 Work : Make the spaces that you are in accessible

When we talk about alternative forms of public safety, I think about the forms that already exist in spoonie communities. Spoonie is a term that is used to refer to people who are chronically ill and disabled. This term is derived from spoon theory. You can read Christine Miserandino’s writing about spoon theory here. They are the person who gifted us with this framework.

Spoonies have to have our own systems of community care because we literally cannot live without them. Also because the support systems that exist actively exclude us and our needs, they are exclusive, ableist, classist and a lot of other things that end in ist. Basically it boils down to we all we got.

Though spoonie issues and ableism are rarely ever centered in public discourse they are deeply interconnected with prison abolition and the movement for Black liberation. A closer look at the statistics around police misconduct and killings reveals that; at prison demographics reveals that; and at queer and trans communities reveals that chronically ill and disabled folks are represented in disproportionately high numbers in all of these spaces. Of course we know the stats as relates to Black folks and Black communities and prisons and police more broadly. In case you don’t, I will say this Black women are one of the fastest growing populations in prison and we are also known to develop chronic health issues, disabilities and mental illness as a result of weathering misogynoir. You can learn more about the concepts of weathering and misogynoir—conceptual frameworks gifted to us by publi health researcher Arline Geronimus and queer Black feminist scholar Moya Bailey respectively.

As I said, spoonie issues are everyone’s issues. We are represented in and across all identity groups, with proportionally higher representation among groups who are impacted by other intersecting forms of oppression. Thank you Kimberly Crenshaw, another Black woman scholar, for gifting us with the framework of intersectionality so that we can understand how various kinds of oppression compound each other. One of the advantages of spoonie issues being everyone’s issues is that this means that spoonie solutions already exist within and across various social, cultural, economic and other identity groups. We already have culturally embedded practices for community care. They already exist, they have existed and are being practiced everywhere.

This is something that I have wanted to write about for some time. I am writing it now because the physical space where I am in life is loudly reminding me of how valuable and important these spoonie systems are. At this moment I am sitting in a hard backed rocking chair, next to a fire-less fireplace. I am in a stone house that is on a five hundred acre property that is used as a space for artists to have distraction free time and space to create. It is 4:58 am. The moon will be full in two days. The silvered moon light is so bright that my body cast a shadow as I walked down the gravel road from my wifilessn cabin in the woods to get to this stone house, which is one of only two structures on the property that have wifi. The sky is full of stars and I can see ALL OF THEM. As I walked down that road, by myself, in the dark, in the woods, in the dead of night two thoughts were on my mind. The first was overwhelming gratitude to be in this space with the moon and the stars and the babbling creek that keeps whispering to me I’m here!

The second thought is a gentle awareness that what I am doing is reckless AF. I am not afraid of the woods or the other beings that walk with me in the night. We have an understanding, and if that doesn’t hold I have a flashlight and a knife in my boot. My recklessness is rooted in the reality that if I were to need help I would have no way to call for it. There is no cell service on this mountain.

I have brought two way radios with me. One is in my cabin. It should be with me. The other is in the office. No one is in the office at this time of night. .

When I was coming to this residency at the Hambidge Center, I knew that there would be no wifi or cell service. I knew that I would wander in the woods alone. I knew that night time is my favorite time to take walks. I knew that sometimes I am overtaken by paint that prevents me from doing the most basic of tasks. Even if I can physically do the tasks, sometimes the pain is so intensive that my brain can’t access the kinds of executive functions that are required for simple things like speech, verbal comprehension, the ability to filter and focus on particular sounds. Sometimes there is pain that moves me beyond consciousness. Blacks me out. I do not always know when it is coming. So it’s best to just be prepared. Keep the room ready so to speak. Though I keep that room ready I do not sit around and wait for the pain to show up. I do not live in fear. I live! I am an adventurous, spontaneous, risk taker by nature.

I also love myself and I want to live. So I support my daring spirit by planning, preparing for the worst. In this situation I had prepared by purchasing and programming the two way radios. I had gotten residency staff to commit to babysit one of them and to come get me if I called. I didn’t expect to call, it was highly unlikely but also likely enough that I had to think about and prepare for the possibility.

I had even gone as fas as to ask my fellow residents if these would be willing to take turns babysitting one of the walkie talkies on the weekends when the office is closed. They had agreed.

As I walked the path to the stone house that I am sitting in now, I was gently made aware of the fact that my weekday plans to support myself would only work during the day while someone is in the office.

I immediately began revising my personal safety/ support plan. I began making a list of which residents I would ask to be my nighttime walkie talkie sitters and in what order I would ask them. It was an ordered list and not a single name. It is always an ordered list, never a single name. This is important.

Whoever I asked would have to be both willing to do what I needed and able. It is possible that anyone could be willing but not able. Or able but not willing. Spoonies are reminded of this everyday. We encounter it all the time. In the wilds of the world there are people who have the power, the ability, to give us what we need but wont. People who have the will, who want to give us what we need but can’t, are not able. FUCK THAT FIRST GROUP OF PEOPLE. Ya’ll are literally why we cannot have nice things. You are killing us. You have blood on your hands.

To the second group I extend my endless gratitude. I see you, be gentle with yourself. Be creative, there are many ways to show up and be supportive. There are many kinds of power and access. You might be able to do more than you realize. One of them is that you can share this writing with other folks in your life—especially the ones who fall into the aforementioned group. It’s not enough to share though, then you gotta follow up and follow through with one on one conversation, coaching and thought partnering. Culture shift happens in small, person by person ripples that grow into huge, cliff crushing, world shaping waves.

Group one if you’re still reading I just want to say, you can switch teams right now. You can decide to use your power and access to say yes. Then you will become a part of the third group, my personal favorite: people who are willing and able to say yes to supporting the needs of chronically ill, disabled people. People who don’t just say yes, but do yes. Who act on their will and apply their ability to make spaces accessible, welcoming and affirming.

Of course these 3 group identities that I have outlined, like all social identities, are fluid and subject to contexts which are constantly shifting. Contrary to what ableism wants us to believe ability and capacity are not stable. They can and do shift over our lifetime and also sometimes moment to moment. There are many things that impact our capacity or ability that are beyond our control. The weather for example. There are things that we are able to do when it’s sunny and warm that we don’t have the capacity to do when there is a foot of snow on the ground.

Which brings me back to this moment that I am in. If it were day time instead of writing about what I’m going to do. I would be doing it, but I can’t because everyone else is sleeping. Later today, when the sun is up along with everyone else, I will need to find someone at this residency who is currently, in this context, a part of group three. I will figure out whether or not they are group three by asking these questions:

  • are you willing to talkie sit for me at night?

  • if so is that every night or just some nights? Which ones?

  • are you willing to come get me or find someone else to come get me in the middle of the night if I need it?

  • will you wake up or be awake if I call? Are you a hard sleeper?

Notice that the final question falls into the category of contexts that we can’t change that affect our ability to say yes even when we are willing. This also might fall into the category of an ability that is less fluid, it just is. That happens. There are things that each of us just aren’t able to do and may never be even if we train and try. Spoonies know this well. We live with this everyday. On good days we can recognize and appreciate this truth non-judgmentally and compassionately. Then there are less good days. Internalized ableism is the devil, she a lie and the truth ain’t in her. But she be out here making us feel shame and guilt. Convincing us to speak to ourselves in sharp, abusive language—to our own selves. I digress.

After I find someone in group 3, or possibly several someones, I will have to organize a system, a schedule. On the weekdays I will need to get the walkie talkie from its daytime office sitter to its night sitter. The battery will last the night. Then I will be safe to wander alone in the moonlight to the sound of the chittering creek with the other beings who walk in the night.

I will set up this system tomorrow as soon as I can. Tonight I will finish my wifi things. The primary one being to follow through with an important commitment that I made as a member of a care team for someone else who is also a spoonie. Like I said, we got our own SYSTEMS because we do not have the privilege of being able to live without them. Without our systems we can and do die either at our own hands—suicide rates for chronically ill and disabled folks are high, they are even higher for folks who are also targetted by the powers that be because they/we hold other identities— or through the planned neglect of systems designed to fail us.

When I say the planned neglect of systems designed to fail us I am not just talking about systems set up by members of group one, team able but not willing. Lifetime members of group two (willing but not able), group three (willing and able), and even other spoonies design systems of planned neglect that will fail us because they are designed to do so. The culture of ableism, capitalism, and all the other isms actively cultivate this tendency in us. These oppressive systems have created a culture that socializes us into reproducing its values and desired outcomes.

This residency space that I am in is a product of that culture. At the time of this writing I have been at this residency for less than 12 hours. Already the people here, staff and other resident artists, have shown themselves to be enthusiastic members of group 3. If you have ever shared space with me then you know that I come with a whole list of things, support needs that I have to organize myself and others to meet. ( This world was designed to kill me but I am determined to live and live WELL). This residency is unique in that there is not a single thing that I have asked that they have said no to. They actually read my application, they read what I wrote about my accommodation needs. Then they did it. ALL OF IT.

Most places that I go I get more nos than yeses. The lack of will and/or ability to provide accommodations is so pervasive that I have come to expect it. That big ass bag that you always see me carrying around, I have it so that I can say yes to myself, support myself when others refuse to or cannot. I don’t like carrying around heavy bags all the time, I just don’t have the privilege of having the world be built to accommodate my needs or of being able to manage all the time without accommodations.Some places that I go, I get all nos—like I said before FUCK YALL. You’re killing us.

This Hambidge residency is the first place outside of my chosen family where I have been hosted that I have gotten all yeses. First place. I feel completely safe and supported here. Also their policies indicate that they have really thought through and clearly communicated their abilities and limitations around supporting folks within the remote, rural, mountainside context where they are located.

That said, why don’t they already have their own walkie talkies that they can offer folk like me who might need that support while wandering these beautiful 500 acre wifi-less, cell signal-less property that is on the side of a mountain in the middle of rural north Georgia? I am asking this question with genuine curiosity. Clearly these are people who care, group 3 lifers who have thought a lot of things through. I am here writing this in the midst of COVID, which they have managed to successfully navigate. The systems that they have in place around COVID and everything else communicate that these folks are expert level builders of supportive systems.

And yet, here I am in the middle of the night musing about how to plug this hole that I have found in their web of care.

My guess is that they don’t have a system like mine in place because they don’t have to think about the things that spoonies think about. They don’t have to. I acknowledge that they have a very small, lean staff and are working with limited resources and capacity. I also acknowledge that we all make choices about what to do, who to support with our limited resources. I further offer that the choices that we make can and do impact our capacity. When we build supportive systems, yes it takes time, energy, and thought on the front end. On the back end though, it gives us so much of our life back. More spoonie wisdom: If I use my limited capacity, to support myself, my needs then I can often actually create more capacity for myself now or in the future. If I use my capacity to continue operating in ways that are unsupportive and/or unsustainable then I will continue to have limited capacity. I will possibly exhaust my capacity completely, at which point I will be forced to address myself and it will take significantly more time, effort and energy.

As relates to accommodation and safety planning this dead end place of exhausted capacity is usually the place where we start our planning. For example, Hambidge has thought about things like how far the nearest hospital is. Their application does say that if you have special medical needs then you should consult with them to make sure that they will be able to accommodate you. That boundary of accommodation on their part is not about willingness, it is about contextual ability. We have established that they have the will. They have used it to think about the most extreme of situations. This is one of the common limitations of people in group 3 (willing and able). They confine their safety planning to the extremes and leave out the middle. That’s internalized capitalism at work, plan for disasters rather than preventing them.

I don’t need a hospital. I’m not even sure what they would or could do for me other than prescribe me heavy narcotics that I don’t want. My situation has its own extremes but I am relatively privileged as far as people with chronic illness and disabilities go. Sometimes I just need someone to walk with me, or carry me home. At home I already have provided for myself the necessary supports.

Now, finally, the point that I am making. (Bless you for reading this far!) This liberated future that we are working towards, the prison free, police free place of collective care where we have systems for community safety at every level. This future is not only the future. It is the past. It is the present. Spoonies are and have been actively practicing this forever. We are ready to lead, to share, to show the ways. Yall are not ready to listen. You have said and are saying no to us over and over again by building spaces that do not prioritize accessibility and accommodation. By reproducing cultures and systems of planned neglect that are designed to fail us you are saying no to us in movement spaces, in art spaces, in community spaces, healing justice spaces, in schools, in your homes etc.

I know this cause I have been in these spaces. I’m frustrated because now that I am choosing to no longer subject myself to spaces that are not supportive, there are very few places that I can be. I am thankful to this residency for being one of those places.

I am sitting now in this straight backed, firm seated rocking chair, in this sturdy stone house, by a fireless fireplace about to walk back through the wilderness to my cabin. ( I still have to send that email that is the whole reason that I came down here). It is now 6:17 am. I am in pain from sitting stationairily. My hand is cramping from the writing. (I’ve written this draft on paper, as I do all my drafts).

I will not be able to do studio work tomorrow. I will have to tend to my body. I have traded a day of my distraction free studio in the woods time for this writing. For you, for your learning. For us, for our future. I say that not to make you feel bad or guilty, or shameful. I say it to remind you that this writing and reading is an exchange. I have taken time to write. You have taken time to read. I have put my body on the line for us and our future. Will you do the same? Will you commit to taking the time, spending the energy to cultivate in the spaces that you are a part of the will and the ability to say yes.

I hope so.

I am inviting you to support my work by building systems for collective care in the spaces that you are a part of. A resources that can support you in this work include

by sins invalid

*For my birthday this year I’m asking you to celebrate with me by supporting my joy, my work and my communities. Each day I’ll be sharing one simple thing that you can do to support me in each of these areas. Visit my blog at the link in my bio to read past posts.

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