Meet Lydia X.Z. Brown: NowThis Next 2021 Honoree

Lydia X.Z. Brown talks exclusively to NowThis about the importance of inclusivity and representation.

Photo Credit: Lydia
Photo Credit: Lydia

Throughout history, there have always been trailblazers and creatives from every generation who have led the world to the precipice of historical change through grassroots organization, self-expression, reclamation, and so much more. Youth have always been the leaders of our movements toward change, and here at NowThis, we give megaphones to the change-makers of the world.

Lydia X.Z. Brown is among the 2021 class of NowThis honorees in the category of Disability Rights. Read Brown's interview below.

What’s a major misconception or belief that you find yourself debunking *in ableist spaces* most often?

Many people fundamentally misunderstand the nature, scale, and scope of ableism as simply meaning ignorance about disabilities and use of offensive language. Ableism is pervasive in every aspect of society and culture. As Mia Mingus, Mel Baggs, Talila Lewis, and others have often written, ableism is deeply and inextricably interconnected with every other system of oppression that exists. If only because ableism is based at its core on values and beliefs about whose kinds of bodyminds are normal, well, and desirable, ableism is both necessary for and dependent on white supremacy, capitalism, gender-based oppression, transmisia, and queermisia.

Make no mistake - ableism is violence.

Casually using metaphors about disabled people's bodyminds, especially in the context of social justice (politicians "turning a blind eye" to the climate crisis; white people "paralyzed by fear" of confronting privilege; racism is the real "virus") sends the message that disabled people are undesirable and incompatible with a liberated and just future. We have received and suffered the consequences of those messages for centuries - in the form of forced disappearance, mass incarceration and institutionalization, medical experimentation and abuse, eugenic sterilization, and continued prioritization of research and medical funding to eliminate and prevent disabled people from existing, instead of addressing the social and political conditions impacting our lives now.

Ignorance about disability, likewise, is an intentional byproduct of ableism. We are taught that there's only one right way to be human, one way to be "normal," and that if you can't assimilate into or approximate that "normal," then you are the problem in need of control, management, fixing, or disappearance. Most of us never question the fundamental ableist assumption that all disability is always bad, negative, and wrong, and therefore undesirable, unwelcome, and unwanted.

Most of my friends and colleagues aren't interested in medical or technological "cures" for our disabilities. We want accessible, respectful, reliable health care and services not contingent on artificially enforced poverty or access to employer-sponsored health care. We want safe, accessible, affordable housing. We want to be valued outside of our ability to work at a certain pace, in a certain way, or at all. We want to be believed and trusted when we talk about pain, fatigue, anxiety, and intrusive thoughts. We want to be able to exist at school, at work, or at home free of fear of trauma and violence. We want to know that we are loved and valued for who we are, and not in spite of who we are and how our bodyminds work.


Tell us about the words that we need to stop using?

Stop using metaphors about disability and disease to excuse failure, mediocrity, ignorance, or violence. As Cyrée Jarelle Johnson put it, "disease is not a metaphor." Yet even and especially in marginalized communities and in movement spaces, ableist values pervade the language we use. Talila Lewis, Sami Schalk, Moya Bailey, and so many others have expounded, for years, on the ways in which ableist metaphor is so common even in marginalized communities (TL addresses ableism in Black communities and Bailey in hip hop music) and in critical scholarship (Schalk addresses ableism in feminist scholarship).

We don't need to keep dismissing the acts of violent white supremacists as "crazy" or the ignorance of people with unexamined privilege as "dumb" or "idiocy" or the refusal of people with power and resources to redistribute and shift to just transition as "crippling" or "paralyzing" our work. Similarly, we don't need to reject ideas about disability in order to prove our legitimacy and worth. (Yes, I'm looking at folks in the queer, trans, and ace/aro communities - where we have a long history of disavowing disability as a means of rejecting pathologization of our genders and sexualities.)

At the end of the day, these uses of ableist metaphor point to the real problem - that we hold ableist beliefs about disability and disabled people to begin with. If we didn't believe that disabled people are less than or that disability is humiliating or bad, then we wouldn't use disability as metaphors and explanations for failure, mediocrity, ignorance, or violence.

What’s the best way for people to be more inclusive?

Develop an access-centered approach to how you live your life, do your work, and build your relationships. The access-centered framework, developed by Jess Dene Schlesinger and India Harville, is rooted in an understanding of both trauma and disability justice. Centering access as a core value and a guiding practice means attending to the full array of needs (emotional, physical, sensory, cultural, spiritual) that we and others in our lives may have, and recognizing that our needs are constantly in flux. Access means ramps and Braille and Deaf-provided sign language interpretation and adapting levels of sensory stimulation. And it also means attending to and caring for shifting emotional needs and responses to trauma caused by interpersonal harm and deprivation, and collective and historical violences alike - ongoing work that only happens in the context of relationship-building (as Aimi Hamraie reminds us). Sandy Ho, Mia Mingus, and Alice Wong launched a campaign a couple years ago titled simply Access Is Love, in recognition of the same value long espoused by Ki'tay Davidson that disability justice means active love. Access means accounting for who is able to be present - and whose presence is desired, valued, and cared for.

Just in an example, in thinking about workplaces and schools that have been partially or completely closed during the COVID-19 pandemic, many reopening policies have not attended at all to the needs of sick and disabled people. Expecting that all people are equally safe and comfortable with returning to pre-pandemic types of social interactions and ways of doing work is just as unjust as expecting that all people have reliable broadband connections and smart devices to be able to work or learn remotely - or that all people had flexibility financially, with childcare, or with their actual job responsibilities, to be able to shift to safer and less risky forms of work. The move to widespread virtual work and school enabled access in so many ways for people in marginalized communities - like disabled people who no longer had to bear the cumulative stress of inaccessible and unreliable transportation to inaccessible and inhospitable work environments, and people of color who no longer had to deal with coworkers' constant casual racism every day. And yet that same move outright inhibited access for so many others or was simply unavailable. Access is multifaceted, complex, and contextual. When access is present, we are cared for, valued, and have the resources and support we need. When access is absent, our physical and mental wellbeing suffer.

Let’s talk about representation in the media and Television. What would you like to see more of?

I would love to see disabled people portrayed in a full range of complex roles with depth and nuance, representing many types of disabilities and ways of experiencing being disabled. It wouldn't be a problem to portray disabled people struggling with internalized ableism, or disabled people who happen to be villains, for instance, if disabled people were also represented as loving their disabilities or being indifferent to their disabilities, or in non-villainous roles. (And for disabled villains whose disability is somehow connected to their villainry, it would be so refreshing to see narratives that explore their response to externalized and internalized ableism, and how the otherwise non-villainous characters do or do not acknowledge the villain's disabilities, rather than simply unquestioningly accepting that someone being disabled is a natural, inevitable cause or consequence of their choice to be evil.)

I would love to see disabled people of color - Black, Brown, Native, Asian, and mixed-race disabled people - present in significant roles. I would love to see disabled queer and trans people - and not just white ones - present in significant roles. I would love to see explicit acknowledgement of so many characters' trauma and chronic illnesses as disabilities. I want to see disabled people loving and fucking, and not being measured based on adherence to nondisabled people's standards. I want to see disabled people being disabled unapologetically. I want to see disabled people in all kinds of roles and all kinds of narratives, because real disabled people have infinitely diverse life experiences. I want to see stories about disabled people's disabilities. And I want to see stories where disabled people simply exist as disabled without their disabilities having any real bearing on the plotlines at all (except that they exist in disabled bodyminds). I want to see explicitly, canonically disabled characters in sci-fi, in film noir, in black comedy, in action flicks and superhero films, in historical shows, in coming-of-age films, in whodunnits, in blockbusters, in art house films, in high fantasy, in romcoms (that aren't about disabled people dramatically dying to be "better off"). And I would love to see these characters actually portrayed by actors who share their disabilities - as Dominick Ławniczak Evans, Maysoon Zayid, and so many others have continually named Hollywood's repeated failure (not by accident) to cast disabled actors into roles of disabled characters.

Representation will not get us to liberation. But when you grow up constantly exposed to narratives that people like you are embarrassing and burdensome, seeing people like you show up in media and television can be a powerful reminder that it is possible to exist in the world as you are - and that you shouldn't ever have to apologize for taking up space in it.