25 October 2016

Disability Justice & Conference Space: Notes on Radical Access & Radical Inclusion

graphic that says, No Prisons, No Institutions, Free Our People! against an image of prison walls, with www.autistichoya.com at the bottom
Image: Graphic that says, No Prisons, No Institutions, Free Our People! against an image of prison walls, with www.autistichoya.com at the bottom.

Over the past few days, longtime Black disabled advocate Mrs. Kerima Çevik (who is also the parent of Mustafa Çevik, a multiracial Black nonspeaking autistic young person) has posted several statuses to her activist Facebook page on the issue of conferences, class privilege, and inaccessibility. (She's also the force behind blogs The Autism Wars and Intersected Disability, and featured in this fantastic interview by Black disabled activist/artist Leroy F. Moore, Jr. at POOR Magazine. I strongly recommend following her pages for unapologetic commentary on racism and ableism, especially how they intersect in disability "rights" and "advocacy" spaces.)

I'm including the full quotes of Mrs. Çevik's words (with her permission) because I cannot possibly do them justice through an inevitably inadequate attempt to summarize – and because my response, in dialogue, depends on understanding what she is saying here: 

1 in 3 disabled people live in poverty. Be aware that if a disabled person has the means to participate in a conference they have privilege their peers in poverty do not. It is the season of nonprofit galas, balls, and annual conferences.  
Know your privilege.  
Try not to flaunt elaborate meals before your food insecure peers. Try not to boast about your travels before those who can never hope to do so. Try to find more inclusive solutions to traditional conferences and other events that will equalize participation for more disabled people across income levels.  
Our peers include people with clinical depression. Try to be thoughtful of them.
Anything less than that is not a a triumph it is advertising for the few and the flaunting of privilege. 
Mrs. Kerima Çevik23 October 2016 
I'm going to explain this one more time because as a disabled woman with privilege living in Washington D.C., I have access to every gala and local conference being held by every national nonprofit headquartered here and I am only limited by my financial means and my local network. 
If you are able to travel to conferences and participate in them you have privilege. Period. That includes you, Leroy Moore, as much as I respect you. 
1. I also have privilege. I was not born into poverty and anyone of color not born into poverty who enters a state of poverty with any education whatsoever is upwardly mobile because they are equipped with information generationally poor people are not. They know, for example, that the water in their Baltimore neighborhood should not be given to their children because it is most likely lead contaminated. They know to scrimp for paint because their houses probably contain lead paint. They know that they will need to risk going hungry to pay the rent needed to live in a safer neighborhood with public transportation to get to a better work life or they risk a shorter lifespan. I know these things. They give me a survival advantage over peers who may be in poverty. They give me the confidence I can leave an impoverished state because I was not born in a culture of poverty. 
2. The only traveling poor in this country save every penny to gain transportation autonomy and we call them migrant workers. If you have a background and educational advantage that gained you the knowledge you needed to understand what you had to do to budget and travel despite your income level and participating in conferences gives you an economic advantage, even if that advantage is a long term one you have privilege. 
3. If the poor could travel, Freddie Gray would not have died being accosted by police near the same mall where TaNehisi Coates grew up. The reason Freddie Gray is dead and TaNehisi Coates is not is because he was given educational advantage and chose to apply it. The minute he entered Howard University he gained privilege and a network. If the poor could travel despite their poverty, they would migrate to where seasonal work was, and inner cities, the legacies of federal transportation policies and redlining, would not be the location of generational, intractable, poverty. 
Mrs. Kerima Çevik24 October 2016 
People are making my call for understanding of their impoverished peers when we are about to enter a season of excess into another thing altogether. I am startled at the number of people not willing to understand their own privilege.  
People who are poor and white make the same mistake. We should all know better. Privilege is not related to being poor. It is not a matter of the many things people have sacrificed to get themselves to conferences and events. 
People without privilege have no such choices. There is no thought of conferences or anything of that nature. They are in survival mode. 
As my initial call for not flaunting the excesses of the holiday season before those we may not be aware are suffering gets lost in people declaring the individual sacrifices they make to attend conferences, galas, retreats and other community events, I return to my point and stand by it. 
Conferences will continue to be exclusive until the entire community has equal access and equal support. Individual sacrifices notwithstanding, conference participation is a privilege not a right. I won't cease saying so until someone finds a way to pipe an entire conference into every institution, prison, group home, and bridge under which disabled people are forced to reside. 
Mrs. Kerima Çevik24 October 2016 


Everyone, including myself, who has commented in all these threads has an element of class, linguistic, and education privilege (even if lacking money/wealth, or formal or elite education, or fluency in English or written speech, we can still have class, education, and linguistic privilege that allows us to know what conferences are, how to get to them, and how to communicate over the internet). But we also in all likelihood have what Talila Lewis (TL) calls freedom privilege – we're not incarcerated (or we probably would not be able to post on Facebook). This is a natural corollary to Mrs. Çevik's call to bring conference space into institutions, prisons, group homes, and bridges. Until we are all free, no space (including conferences) is actually meaningfully accessible or inclusive.

Here's where I want to push back on Mrs. Çevik's conclusion though – if everything literally cannot be accessible to literally everyone, then what does it mean to be radically accessible or radically inclusive? I talk about multimodal access/participation as an ideal and an imperative for our practice and community-building, because that means maximizing who can participate and engage with what – the ideal, and grandest, most just vision being everyone having access to things like community and kinship and intimacy and education and joy. 

But what that looks like may be different and come in multiple (and infinitely variated) forms. 

For example, for some autistic folks who are (a) not photosensitive epileptic and (b) sensory seeking in a particular way, strobe lights and disco balls might be extreme sensory joy. Obviously, those are also inaccessible for many (for a variety of reasons) and outright dangerous or life-threatening for others. So does that mean no parties may ever exist with strobes or disco balls, even behind closed-doors (and no windows spilling the flashing lights outside) and with explicit warning on all invitations and on signs or audio announcements outside the building? (Assuming an enormous amount of money availability for this imaginary party, here.) 

Another example: Someone who is deathly afraid of dogs (has an actual phobia) and someone who relies on their dog as their service animal may not be able to exist in the same small group in-person activity, all else being equal. That doesn't mean that either of them deserve to be shut out or excluded, or that one of them should be prioritized over the other. But it is obvious that a space currently occupied by several people who rely on their service dogs is not actually an accessible space for the person with the phobia of dogs, even though it is a very accessible space (all other considerations aside) for the people with various disabilities who rely on their service dogs.

Another example: No matter how much work so-called radical folks might put into creating "safe" space, such as through avoiding scents/fragrances, banning flash photography, giving content notes and trigger warnings for a variety of commonly triggering content, intentionally not engaging in body or diet talk, avoiding microaggressions of any kind, and so forth, there is always a very real possibility (and it frequently happens) that someone will still experience a trigger or retraumatization because others simply didn't know and couldn't possibly have guessed (without knowing that person very well personally, which they might happen to not) that something specific would be triggering and retraumatizing. The ignorance (literally, not knowing) of the other people in the space in no way diminishes or mitigates the actual harm caused by the retraumatization, nor does ignorance excuse harm caused. But it demonstrates that even with the most conscious and intentional intersectional organizing, there are always things that may not be accounted for or possible to account for.

Another example: Many autistic people (especially autistic people who don't also have what are commonly called cognitive/intellectual disabilities) who are literate strongly prefer to communicate over text – text message, instant messaging/online chat, email, or text-based social media – sometimes even when in the same physical space, and even when the same people can communicate using spoken speech. Many people with cognitive/intellectual disabilities (whether or not they are also autistic) who use spoken speech strongly prefer to communicate using the phone or in face-to-face meetings. So for the first group of people, conference calls can be difficult at best, or completely inaccessible at worst. For the second group of people, long email chains or Facebook threads (or this blog itself) become difficult at best, or completely inaccessible at worst.

I don't think that the answer or goal we're looking for should be that literally every space/activity/program/style of communicating or connecting is actually fully accessible and completely safe to every single person, because that's actually not possible, as illustrated in the examples above (and there are many more possible examples to draw on). It's what I call an asymptoptic standard (but the kind that ought to be a moral and justice imperative for us, rather than the kind that we ought to toss out, like the asymptotic standard of "whiteness" for people of color as the goal in white supremacy). In geometry, an asymptote is the imaginary line that a curve will come infinitely close to touching but never actually intersect. 

What this reality calls for is opening up our imagination to dream up more spaces and more methods of connecting and building in-person and online and other means of communicating and being with each other. It's not that conferences are inherently bad or wrong (or that it is wrong or bad to participate), but that conferences, in their current design and in the current world, are inaccessible on multiple (often intersecting) levels, especially class, as Mrs. Çevik calls us to keep in mind. But even in a future world where we magically eradicated poverty and granted everyone (accounting for multiple disabilities and other currently oppressed identities and experiences) the same or equitable amount of resources (including money, transit access, time, and energy), conferences are still going to be (a) the desired, or at least enjoyable and useful, format for some people for connecting and sharing information/ideas, and simultaneously (b) not a format other people enjoy or can fully participate in (or participate in at all) for other disability-related reasons (say, someone's social anxiety, or the length of time someone else can focus, or yet someone else's current lack of ability to cope with trauma in new and unfamiliar situations and discomfort with trying).

To be clear: I'm not advocating against making everything more accessible and more radically inclusive. To the contrary, I believe we have a moral imperative to make all our spaces as maximally accessible and inclusive as possible, and to aim constantly for total/full accessibility and inclusion as our goal. I also believe that expecting perfection – totally safe spaces, spaces that are equally and fully accessible for every single person's possible access needs, etc. – is actually not possible (again, see conflicting access needs). Disability Justice as a framework and imperative allows us to acknowledge and work within imperfections and limitations. Not to accept exclusion or inaccessibility, but to recognize that conflicting access needs are real, that even the safest of spaces can still retraumatize people, that every single type of program or activity or space or way of connecting/communicating is not ideal or desirable for every person, that every single person has capacity to harm, to be ignorant, to fuck up, etc. (especially when we remember how much class privilege, ability privilege, education privilege, and linguistic privilege it requires to use whatever is current activist terminology and to keep doing it consistently).

Aim for infinite arrays of ways to communicate and connect. Aim for multiple tactics, multiple venues, multiple spaces, multiple programs – not to segregate or exclude by design, but to maximize opportunity and equity for actual participation and engagement by all people, on our own terms.

At the Washington Metro Disabled Students Collective, we tried to account for the reality of multiple conflicting access needs, class needs, and such in planning our events. We knew that some sick and disabled folks primarily want spaces to be social with each other, without the pressure or expectation to talk about activism specifically or directly, but to be around other people who get it, who get us, and who understand where we're coming from, and to do so with an intersectional consciousness (i.e. recognizing and being accountable around different power dynamics in a space). We also knew that other sick and disabled folks primarily want spaces to do activism and organizing with each other, to talk specifically and directly about activism and disability politics within an intersectional framework steeped in disability justice. And of course, that many of us want access to both.

We also knew that some people who wanted to be part of our spaces work, and what that looks like is quite diverse – from folks who have the 9 to 5 office jobs, to folks who work in shifts, either day shifts or night shifts, weekdays or weekends, and sometimes multiple jobs. That some folks have childcare or other caregiving responsibilities. That some folks are well versed in disability justice language and other folks have never been (or are unable) to consistently use social justice terms and vocabulary. That some folks find it easy to use public transit, that some folks drive and rely on access to their own car, that some folks don't have ready access to any kind of transportation. That weekend events would work great for some people's schedules and spoon levels, but weekday events would work better for others, or weeknight events for still others, and that these groups were sometimes mutually exclusive. That these considerations are intricately wrapped up with race, class, gender, and disability – that, for example, as an often feminine-perceived person, I'm at greater risk for sexual harassment in a social space; that as a light-colored East Asian person, I'm at far less risk for police violence at a protest; that as a person with a college education, I'm far more privileged in ability to have conversations with certain types of language and knowledge assumed.

Instead of trying to create an event that would somehow magically accommodate all of these sometimes exclusive and competing access needs – all valid and legitimate needs that still created tensions in considering how to maximize access and inclusion – we created a model of multiple kinds of events. Sometimes we did things on weeknights, sometimes on weekdays/midday, sometimes on weekends. Sometimes we had explicitly social gathering events, and sometimes we had explicitly political activism forums/events. The idea was not that everyone would be able to go to everything (even assuming freedom and a minimal level of class privilege) but that as many people as possible would be able to at least go to something of a kind they would enjoy and that would minimize the impact on their spoons.

This is not a perfect model by any stretch of the imagination (and of course still relies and assumes certain types of privilege), but it is the kind of work I am deeply invested in creating and developing further.

I have always held that as a person who simultaneously experiences several layers of oppression and several layers of immense privilege, it is an immense and necessary responsibility for those with any kind of privilege to use that privilege in a way that is accountable to our comrades, neighbors, and community members who do not have the same privilege.

In contrast to Mrs. Çevik's exhortation not to share photographs from conferences or restaurants that evidence privilege simply by existing, I would suggest instead taking a harm reduction approach. By all means, share conference and food photographs as evidence of joy and connection – joy and connection that oppressed folks desperately need when existing in a world that is often literally trying to kill us – but do so in a way that prevents them from being shoved involuntarily into the faces of our fellow folks who might be further depressed, anxious, or retraumatized from exposure to them. Organize conferences and social gatherings and academic panels, but do so in ways that challenge the traditional conference model (especially entrance fees, expensive cities, or transit-inaccessible rural locations) and proactively create mechanisms to maximize access/inclusion for as many people as possible who would like to go but currently cannot. (And don't do it merely as an "accommodation" for some of "those people." Completely upend fee structures and prioritize paying multiply marginalized folks for their time, energy, and labor, and getting people to these spaces – which many find emotionally powerful and revitalizing – who usually can't go or who have never been able to go, ever.)

Yes, it is absolutely a privilege to be able to go to a restaurant or a conference (even if someone else is paying, even if you made huge sacrifices to get there, even if you experience a multitude of oppressions), but that doesn't mean we can't talk about being in these spaces – just that we have a responsibility to minimize the likelihood of harm we might cause in how and where we talk about it, and a responsibility to use that privilege to change and minimize the inaccessibility and exclusion inherent to conference spaces. Spaces are imperfect and inherently limited in their ability to be accessible, but we should always, always strive for maximal participation, maximal engagement, maximal access, maximal inclusion. Honoring all of our bodies requires diverse tactics, diverse spaces, and diverse communication and connection methods – outside and in challenge to the ableist, racist, classist implications of capitalist structures.

And we've got to keep fighting (with a multitude of tactics, and in a multitude of forums and venues) for liberation and freedom for all of our people. When we all get free, then we will actually be able to maximize the accessibility of these conference spaces (spaces where people sharing an interest or passion can gather to learn from each other and form or strengthen connections) to the fullest extent a conference can become radically accessible and inclusive. When we all get free, then we will actually be able to say truthfully that we are all free to get to these spaces.

No more prisons. No more institutions. Tear down these walls, and free our people.


Mrs. Kerima Çevik wrote a response to this blog post, published on 30 October 2016, at About Autistic Hoya's Post On Disability Justice & Conference Space. I responded to her response, but not on this blog.