To the Edge of Discomfort

It feels heavy, persistent and I hear it rumbling deep inside. Like a hunger that I don’t have the time to feed. The rumbling which started softly, rises in volume until it is all I can hear. I want to be too busy with life that I can ignore it, but finally I have to acknowledge it, that I feel upset. My body makes me listen. I can’t focus or be present with other people until I figure out what exactly I’m feeling.

A few weeks ago, I hit that point. It was totally inconvenient and I avoided it as long as I could. Sometimes when I wait this long I lose words altogether and the only way I can access myself is through drawing. I was doodling in my journal, finally conceding to attend to this seething, multi-layered mess, and I drew this sign from Math, a “greater than > less than sign”. A sideways letter “V”, with the open side facing the amount which is worth more in the equation. Never one for math, I always imagined it like Pac Man gorging himself on coins, his mouth always facing the side with more. This “greater than > less than sign” was drawn with a line of chains links. Like if you laid out a chain in a sideways “V,” except I drew in every other link darker, so it looks like a chain at first; but if you looked harder you saw each link was on its own, like individual circles making a “V”. I paused and looked at what I had drawn and felt the lid lift on all of my emotion. 

I deeply desire community. As a Mestiza raised in Latin@ culture, as a Disabled woman who grew up poor, and as someone who is passionate about self-care and traditional shamanistic practices, most of my community interactions require accountability. To participate at all, I am required to hold people accountable. It requires so much energy for me, offerings of energy and effort.

There’s a built up expectation of who belongs in a community. Exclusion affects people on both sides of the “greater than > less than” equation. On one side of the equation, it leaves a person out and alone. On the other the side, it requires someone or a group of people to participate in hurting a person. This is especially true when the excluded person has directly asked to participate or for access, and the person they asked this from refuses to be accountable. It disempowers both people and both people often blame each other for that feeling of disempowerment.

Twitter conversation: #disabilitysolidarity

I decided to join a Twitter conversation discussing the reaction to a solidarity letter that a Disability organization put out for people to sign onto concerning the murder of Michael Brown and the activist response in Ferguson. Unfortunately, this letter centered disability experiences with police brutality versus acknowledging and condemning racism and the devaluing of men of color. In the comments on the Twitter conversation announcement page, it seemed like people seemed to want to discuss how the Disability community could show up in solidarity with activists in Ferguson.  

Instead, when the #disabilitysolidarity conversation started most people began discussing police brutality and the many murders of Disabled people by police officers. People discussed how people of color weren’t included in Disability community. And people wrote about disability access issues, for example, the lack of interpreters at events and the requirement that protesters in Ferguson keep moving at marches. A few people tweeted that these were all valid issues that needed their own space and discussion, but solidarity was more than disability (individual and community) issues.  

I asked, “As people of color what can WE do to be in solidarity within disability community and in solidarity with Ferguson?” People responded to my tweet asking me to be mindful of access, providing access, and not dismissing what people asked for in terms of access accommodations. These tweet responses were some of the most retweeted comments from the whole conversation.

At first, I was confused. Then I realized that they were assuming that I wasn’t disabled, and I felt embarrassed.

In my head, I keep thinking that it’s just a Twitter conversation. People only have 140 characters, and those 140 characters were flying across the screen, mostly people just stating things and hitting “return.” It wasn’t a “real” conversation. Yet, the problem is that even in conversations, this mistake still happens – people assume that if I speak from one community that I must also not be part of their community.

Women of color writing group

I was so excited earlier this summer when an acquaintance invited me to a gathering of women of color to share writing. I met another disability activist at the first meeting who seemed excited to connect with me. I talked about self-care and people seemed interested in that. However, the meeting space was at a woman’s apartment. Because it was a person’s house, I had assumed it wasn’t wheelchair accessible. I used my energy to walk in and then realized upon walking in that there weren’t any chairs. I also discovered I couldn’t use the bathroom. I used more energy to sit on the lone bench that didn’t give me the support I needed to sit comfortably. All of which I did in silence without anyone acknowledging the issue. The next time I went, I brought chairs and I left when I needed to use the restroom. The women were thankful for the chairs and my navigation of the inaccessible space continued unacknowledged by the group.

Most of the people attending this writing group volunteered at a local community garden. They talked about this garden as a safe space. It was located in a diverse neighborhood and they described this safe space as a space where they didn’t have to conform to dominant culture norms. They were discussing community events that were to be located there and so I asked if it was accessible. They didn’t think it was. I offered to help give tips on accessibility, to even go and check it out to help make a plan for access.  I got a smile and the agreeable sounding, “yeah…” response. I know that response. It’s the nice dismissal. I dropped it.

A free poetry festival was happening in the town I lived in and a woman of color poet I really wanted to see was reading. It turned out one of the people attending the writing group was on the organizing board for the poetry festival. I talked to them about the location of the event, a hotel/bar downtown. It was historic had made minimal ADA upgrades. There were stairs in the middle of the performance space and only one ADA compliant bathroom, which could only be accessed from one specific entrance. I suggested options for making the space more accessible, hoping that this person could act as an ally to create a disability access change at the venue. I gave them my email and offered to help in whatever way they needed. I didn’t hear from them and when I arrived at the event, there didn’t appear to be any access changes. One of the workers, noting that I, a wheelchair user, was there put down a noncompliant ramp over the stairs. I tried to push up frontwards, and nearly tipped over backwards. Then I turned around to try and go up backwards, and nearly slid forward out of my wheelchair. While I was making my effort to get up the ramp, my partner blocked strangers from grabbing my chair to force me up the ramp. (I’m always amazed that someone grabbing a wheelchair, taking control of a disabled person’s body is still socially acceptable and not viewed as assault.) I couldn’t get up the ramp. By now, I was frustrated and told the person from the writing group that I was leaving. They then advocated and got the venue to open up an emergency exit for me to get in on the performance floor level. They gave me a complimentary drink coupon and an apology. However, the drink coupon remained unused because there was no way I could get back out, to go around the building to get to the bathroom. After the reading, the person apologized and I tried to affirm that they did the best they could in the moment. Yet, a poetry series that this same person from the writing group MC’s monthly at a downtown coffee shop, which was also inaccessible, continues to be located there.

In addition to the energy and work I expended to make this community event even minimally accessible, I lost the opportunity to make a friend. It sucks on both sides of the “greater than > less than” equation. Now, every time they see me, they look at me defensively, perhaps remembering the advocacy and accountability I asked for, and not that I’m a fun person who loves poetry. And every time I see them, I now think about how they never followed up with me and about how I felt excluded and emotional, despairing of any change. One side has the privilege to ignore what exclusion means – that for example, disabled people like me are not treated as human beings with full rights and dignity. On the other side, the excluded person knows that ultimately they can’t do anything but advocate the best they can and deal with being excluded.

            And even though all of this is true, I’m still unclear on why I’m so emotional. There is a lack of clarity to the clear picture and it is fuzzy. There shards of truth – solidarity – accountability – exclusion – greater than > less than dynamic…

What is?

I desire community. I want to bring all of the worlds I live in into the worlds I interact with. Yet, “community” that exists is often singular – Disability community, Mujeres community, shamanistic community. Most of me is excluded as I attempt to participate in one of these non-intersectional communities. I try to figure how to leave pieces of myself behind. Yet, when in one of these communities if I try to squeeze my disabled self out, then I literally I can’t physically function. If when I interact with people I try to exclude my Mestiza self then I can’t socially function. In shamanistic communities, I am often perceived as needing to receive “limpias” (cleansings/balancings) versus having the capacity to perform them; because “healing justice” means practitioners are supposed to look like the representative of “health”, agile and non-disabled.

I am light-skinned, raised on the border immersed in one of my cultures (Mexican), where the privilege of “passing” also has a backlash of anger at not matching up with white cultural assumptions that I should understand and interact within white cultural norms. This is not to say that I don’t benefit from light-skinned privilege. Every time I pass through border patrol checkpoints and am just waved through, every time I am invited into an opportunity where someone is less threatened because I “look like them”, and every time I look at cop in the face and just see them register boredom, I am receiving privilege. And I admit I use this privilege. I participate in disability community, treading on my light skin and try to just not talk. It, at least, lets me get that far. With people of color and shamanistic communities, I have less ability to even get in the door because I need disability access to get in. 

In Disability community space, cultural interactions are in dominant culture format. It reflects who has power in the community (primarily white, straight men and women with physical disabilities). You are supposed to talk quietly; use no slang, (which I could agree with if it’s for access reasons); to disagree is to be impolite; and how to live like a privileged, dominant culture, nondisabled person is supposed to be centralized in the conversation. This means discussing things like; working, travel, accessing stuff like the movies, and living alone in an apartment or house in the city. Sometimes it means also talking about relationships, yet almost never sex. Mostly, we talk about the blatant discrimination when it comes to “access” and “choice”. However, we discuss it with the assumption that you’d choose to live like a privileged, dominant culture, nondisabled person if given the chance. It is important to discuss choice, access and disabled people. Yet, Disability organizations and leadership create an agenda that does not challenge the status quo. We are always asking how we can fit into the system versus practicing Disability Justice, re-envisioning what inclusion means, and demanding an expectation of difference. 

When we come together in community, there’s such an intense desire to have “safe space” in order to discuss our common oppression, safe space meaning everyone feels comfortable. Yet, in reality, for those of us trying to bring in our many worlds into the space, comfort isn’t possible. For example, when I can’t access where the event is (or relieve my bladder), safe space isn’t happening for me. We can’t pretend that because we share oppression that we will then be the same culture/identity/class outside of that experience. We must be aware that if we want the opportunity to connect through a common culture, then we must also be willing to be uncomfortable. I define safe space, and feel like I’m in it, when there are ways to deal with being uncomfortable that everyone has agreed on.  

I want to be involved. I’m writing a book for people who live in multiple worlds and work on social justice. Yet, ironically, I’ve connected to people like me and am in safe space only through informal connections. I have a few disabled people of color friends who grew up poor and identify as female. So rare is it that I get to participate in a community where I can even get to the point of bringing up identifying as a woman, which is often part of gender-binary privilege, or where I can bring up being raised poor, which involves multilayered experiences like going to the poor people clinic to get disability medical care. Because I can bring in all of these pieces of my experience, these informal connections are lasting. Even though the ability to be my full self happens through the development of relationships, based on what we have in common, the real safety happens in how we navigate when we make each other uncomfortable, triggered, or angry. When our differences clash, the cleansing of mutual respect, patience and the risk of love lets us return to each other again and again.

Self-care in community starts with doing our own work to make our spaces safer. This work requires us to bring ourselves to the edge of discomfort and to ask for specific agreed upon ways to handle conflict. Perhaps the group could agree to let go of controlling the outcome, trusting that people will return, leaving truth on the table and returning to it, even if people continue to disagree.

Discomfort is different from emotional pain. The only way we learn about discomfort is to risk putting aside our defensiveness and trying to go to our discomfort’s edge.  We can go to that edge and sometimes when we sit there, maybe with no answers at all, we find we can go further. Being uncomfortable together, not relying on one person to continually push us there or hold us accountable, is one of the best ways to demonstrate a commitment to safe space. It is a commitment we can all choose to make.