Positivity Activism and Disability Justice: An Interview with Xian Horn

Xian HornCan you describe some of the work that you do?

Sure….In a nutshell: I run workshops on beauty and self-esteem, because I believe it is an essential human right to recognize our gifts and beauty. As a teacher, blogger, and speaker, I’m a storyteller whose stories ideally serve as a reflection of others and the audience. But my lived experience as a work in progress and any residual “wisdom,” allows me to wear many different hats. The week I met you speaking at Barnard for the Women Action and the Media Conference, I also spoke at the Williamstown Theater Festival at Williams College, representing a group called Diversability at a Tech Conference. I was also a willing guinea pig and judge for a project last year called the Connect Ability Challenge with AT&T. This project served as a launching point for the development of assistive tech. I love that the work is so varied because I always learn something new. I see my work as serving and connecting to people, lifting us up, sharing things I believe in, and helping others to see beauty and humanity more clearly both individually and universally.

How did you become involved in positivity activism?

Although it might sound like a hokey term, positivity activism is about awareness and empowerment. Growing up people always told me I was positive because I smiled and laughed a lot, although it was not something I was conscious of. While I may have been ridiculously positive and confident as a child, in my teens and early 20s I was still seen as positive outwardly, but had no clue why people saw me that way: inside I was a ball of insecurities – not as a person with disabilities – oddly – but just as a girl becoming woman, as someone with a people pleasing problem. I was someone who was deeply afraid of rejection. Positivity activism for me is not about being happy all the time, or never feeling upset or angry, it’s about the conscious, even defiant choice to find the light in dark situations and times; about not letting a negative situation or person take your power, or pull you under. It’s about trusting that no matter what life looks like now, your lowest point is not forever and can catapult you to your highest. It’s about moving forward anyway; making a choice to see the best and brightest in situations and people and not letting a current bad situation sour what you can do from now on, and what’s waiting for you in the future. This is also how we can work to conquer self-esteem issues. No matter what voice inside tells us we are not enough, no matter what other people may say, we are beautiful as is. We can grow, change, and become better. We can make an active choice to shift our focus to possibilities rather than disappointments. Rejection, tragedy and injustice, are all vital experiences that can empower us to be greater, kinder, and more aware of who we want to be. Rejection, tragedy and injustice can be our stepping stool to the next level of who we become individually and culturally.

How do you think your work in positivity activism intersects (or is similar to) your work in disability activism?

I think for me my positivity activist mindset has helped me never to focus on or languish in what’s not right about disability issues or issues in general, but motivates me to be part of the solution and work to champion change. It gives me courage to tell my story (I always had debilitating stage fright before I realized I had a really good reason to take the stage – one that was not about me at all) in hopes that it will empower someone else to do the same. It allows me to think of the ski poles that I walk with as part of the wings that make me soar! Positivity activism is a lens through which I own the beauty of my story and hear others stories.

As a person with cerebral palsy, I’m frequently told microaggressions. How do you go about navigating statements like these?

I always view these misunderstandings and misconceptions as an opportunity to change perspectives and flip the original narrative. Either by asking a question in a non-accusatory or non-judgmental way like: “Interesting. What does disability look like to you?” However they answer, you have the power to flip those expectations or perceptions with your response. You have already broken their mold of what disability is to that person, by being smarter or looking different in their estimation, so you are already breaking stereotypes. I love surprising and confusing people, it helps to illuminate new awareness or change mindsets. I also have the right to ignore what was said or how something is framed, and use it as an opportunity to make my own statement.

One day I walked into a store and a very stressed woman looked at me angrily and said “What’s wrong with you???” I had answered nicer versions of this question before, so without thinking I said what I usually say, “I have Cerebral Palsy and it’s the blessing of my life. Thank you very much for asking.” I smiled genuinely and turned to walk away. She suddenly burst into tears and apologized. She then told me she just been laid off and had just had the worst day. We talked for a long time, hugged, and ended up becoming Facebook friends. If I had responded aggressively back, I’m pretty sure that things could have been very different. I have enough confidence in my disability not to let others change what is true for me. We control our own narrative whether people get it or not. Our presence alone is an education. But we cannot assume people can read our minds, or that they must all instinctively know how to treat us. We set that standard.

Additionally, how do we make people more aware about the wide-range of disabilities?

First, I think we must encourage people of all disabilities to share their lives and stories – on a stage, in a blog, on Youtube, in film, even in a personal journal. Then, where possible, share these things with others. For example, the ongoing ReelAbilities Film Festival showcases a variety of disabilities and perspectives in the films selected, and could be great place to start. They have screenings all over the country now.

I’m really interested in the concept of “self-care.” How does the ideology relate to your experience with disability?

It is central to my evolution as person with a disability. I didn’t realize until I was about 25, that because I never saw my disability as an issue, I had essentially ignored my body completely. I was a hippie in some ways, so I dressed kinda sloppy and my hair was always in knots. I hated my feet too. When I started running workshops on beauty and self-esteem, I knew I had to walk the talk. I started getting pedicures just for me (to show my feet some love). I got rid of my jeans and shoes full of holes (I drag my left foot, so after a month or two of wear, there was always a new hole popping up)! I got my hair done more often. I can honestly say I like my feet now – progress – and that self-care gave way to self-acceptance and celebration. I still think I have a long way to go and I’m very honest with my students about that.

As an aspiring writer, I’m interested in the importance of complicating traditional narratives. When I see a disabled person in the media, which is a rare occurrence, they are often involved in a narrative in which they gladly “overcome” their disability, or they achieve superhuman achievements regardless of the hurdles that their disability presents. How do you think we can challenge these harmful narratives?

I personally don’t think there’s anything harmful in being superhuman in overcoming something (especially a negative or damaging mindset), but I do think patronizing narratives where a person is almost like a puppy, or anything “Us vs. Them” has to go! We all want the same things: to be loved, a voice that is heard (even if we cannot speak), and a purpose. So, one way is to create more honest narratives from direct sources, to connect the audience to the universal as we celebrate difference. We can educate people who intend on being allies as to why certain things may be problematic for true portrayal. We can speak up and have conversations rather than diatribes.
Venting makes us feel better, but it may not help others to receive the message. I think it’s more beneficial to engage with people and hope the message ushers in awareness or change.

What do you see as an alternative to this? (I’d love to see more movies, music, blogs, art produced by disabled folks).

I’d love to see that too and it’s one of the reasons I joined the ReelAbilities Film Festival Film Selection Committee for the first time this year. I wanted to learn more about what’s out there about people with disabilities; and by far, I find documentaries the most powerful space where I can learn the most firsthand, about disabilities other than my own. And the fact there have been a record number of submissions in the last year, means more narratives are being created and shared worldwide. That is a beautiful sign that we are headed in the right direction!

How do we disrupt the one-dimensional narratives that are prevalent in our own community, specifically those relating to race, class, and gender?

In adding dimension, I think focusing on the universal and simply by displaying more fully who we are, our values, and why we love what we love, our beliefs, dimensions will develop and shine; it’s easy to focus on one note, or make snap judgments, but if we dig deeper: share family life, our favorite music, books, sports, authors, philosophers, or details of our spiritual life or personal struggles, we are not defined by cultural labels, but become, and are portrayed as our more authentic selves, more vivid, and more like Hyperspace (many, many, more dimensions and galaxies within one)!

You are SO Brave: Disability Studies vs. Disability Justice at #SF41

“You are SO BRAVE” is a statement most disabled people are used to hearing. Able-bodied and able-minded people frequently infantilize our experiences and lives for their own inspiration fetishes. But you might be shocked to hear these words coming from the mouths of disabled people at a conference surrounding disability studies and scholarly work, what is seen by many, especially the attendees, as a vital part of the disability justice movement.

Last September, I went to pick up flyers for the conference “Keywords and Key Questions” from the Institute for Research on Women and Gender Studies at Columbia. As a disability justice activist, I was excited to hear about the conference, as disability rights advocacy has been taking a new turn on campus this year, with the production of V-Day’s show Respect(Ability), the formation of various student groups, and the sponsoring of Invisible Disabilities Awareness Week by Student Life. My excitement quickly diminished, however, seeing the list of speakers and realizing that there were two panelists of color, Sayantani DasGupta and Michael Ralph, out of 25 speakers. As a member and organizer at FIERCE, I have met countless queer and trans disabled people of color: Kay Ulanday Barrett, Mark Travis Rivera, and more.

The reality is that disability work, just like anti-racist work, just like the LGBTQIA+ movement, and just like feminist politics, many times fails to be intersectional. White supremacy has permeated movements so deeply that when people in those communities who also hold other marginalized identities, specifically people of color, speak out about the lack of intersectionality, they are patronized and patted on the head. Instead of incorporating the ideas of intersectional justice into the disability movement, academic scholars are too focused on defending their work and their fields.

Despite the fact that I saw few panelists of color on the posters, I decided to give the conference a chance. As a member of the Social Justice House who had started a project to confront the issue of disability injustice at Columbia, I was curious to see what the faculty of this university was doing to support disability rights on campus. Perhaps they would address the issue of so few academics of color in disability studies. Perhaps these academics were still allies of people of color and would create conversation around issues that exclusively impact us. Perhaps there would still be a large audience of color who would ask questions to specifically lead panelists in the direction of race and disability. Unfortunately, none of this was the case. The conference was no more than a circle of primarily white disability scholars blowing their own horns.

This work is not about you, white disability scholars, this is about us: the disabled people in your community who are not given a voice, not given representation, not allowed access to your spaces because: face it, academics is inaccessible. Yes. Your version of disability justice is INACCESSIBLE.

When over seventy percent of college graduates are white, your space becomes inaccessible to people of color, particularly Black people. People of color whose races impact how and if their disabilities are diagnosed, whose races impact their interactions with the police and criminal (in)justice system, whose races impact every aspect of their lives and experiences because we do not live one-dimensional lives. Disabled people of color are three-dimensional experiences. We cannot separate our brownness or Blackness from our disabilities any more than we can separate our spines from our backs. And yes, we do have spines. We are unafraid. We are unafraid to confront you if your disability work is not intersectional.

And we do not want to hear patronizing compliments on how speaking out is SO brave. People of color are not meek, we are not compliant, we are not silent. We are warriors who have been roaring for centuries and you have just begun to notice. We deserve a movement that is built around obtaining justice for all disabled people, not just disabled people who are cisgender, heterosexual/romantic, and white.

Our communities are building a movement for justice and healing that hold our queer, trans, low or no-income folks of color at the center. We are building for those of us whose disabilities impact our sexualities and intimacies. For rape survivors with PTSD who have the right to choose if they have sex and who they do or do not have sex with. For women of color with cerebral palsy. For those of us with chronic pain and social phobias who cannot leave our homes to spend time with our loved ones. We work for those of us who are trans, like me, who do not have access to medical transitioning because hormone replacement therapy can create complications for our pre-existing conditions. For transmasculine folks whose masculinities are denied because masculinity and disability are seen to be in conflict with each other. Disability is connoted with dependence and weakness whereas masculinity is associated with power and autonomy. For trans femme sex workers with AIDS who do not have access to treatment. We fight for those of us who are low or no-income who cannot afford the long and expensive process to become diagnosed and, without the ticket to ride that a diagnosis provides, are barred from disability services, benefits, or disability-specific healthcare. We are still equally as disabled because the medical-industrial complex does not have the right to tell us our pain and experiences are invalid. Disabled people with invisible disabilities, such as borderline personality disorder, schizophrenia, autism, autoimmune disorders, and chronic pain, who are told their illnesses are not real because they do not present visibly, whose doctors refuse to diagnose them. Folks with invisible disabilities in unstable housing conditions who cannot disclose that they have disabilities because of the likelihood of being evicted. Disabled young people who are tracked and sidelined in special education, institutionalized in detention centers or psychiatric hospitals, or sedated with drugs. Or disabled young people who do not have the option of pursuing a diagnosis or treatment because of stigma within their families. Disabled people like me who did not see a single representation of themself in that room.

Leah Lakshmi Piepzna-Samarasinha

Fortunately, a few months later, the Scholar and Feminist Conference: Sustainabilities hosted a panel organized by our very own Che Gossett titled “Disability and Healing Justice: Making Our Lives Sustainable and Our Movements Livable.” This was the panel I had longed to see in October. Panelists Geleni Fontaine and Leah Lakshmi Piepzna-Samarasinha reawakened my faith in the disability justice movement. Geleni Fontaine is an anti-violence, self-defense instructor creating a movement for women, survivors, and disabled folks through their work at the Center for Anti-Violence Education, as an RN, as a holistic healer, and as an acupuncturist. Leah Lakshmi, a mixed-race Romani, Irish, and Sri Lankan writer, is an incest and intimate personal violence survivor who self-identifies as “crazy, chronically ill, and disabled.” She attended NYU where she did HIV/AIDS work, but at 21 moved to Toronto because of her healthcare access needs. She was part of a “movement culture of entering movements to save our own lives,” and did work for Sins Invalid, an organization for disabled performance artists to create space for discussion on respectability and desirability politics.

Textbook image of drapetomaniaLike many other movements, the disability justice movement begins in Black liberation and Black studies and these scholars did not fail to touch upon that. Disability studies in this country begins with runaway slaves being diagnosed with drapetomania (“the disease causing [slaves] to run away”). The creator of the term “disability justice,” Leroy Moore, was a Black disabled man. Harriet Tubman was disabled with a traumatic brain injury and went on to save thousands of slaves. Our stories of disability are rooted in intersections of race, gender, class, religion, culture, and queerness. Disabled people are either seen as broken machines or as having perfectly-working bodies with broken minds. But disabled people are people with a culture, with history, with communities, and with organizations. Disabled people are resilient, and able-bodied people have a lot to learn from us. Our existence is resistance. Even we disabled people have a lot to learn from each other about solidarity because we all have different experiences. We are not a monolith.

Geleni and Leah touched on healing justice in the disability movement, quoting Cara Page: “If our movements themselves aren’t healing, there is no point to them.”

Pushing against the system means that power is shared. We must work to make systems accessible. The panelists shared their hopes for the future. A future where disabled people are believed, a future where disabled people are valuable, not a liability, and a future with a medical system that recognizes that we are intersectional beings. We must build communities of care and healing. We must make disability movements intersectional and accessible. We must create movements to save ourselves.