We Love Like Barnacles

This new era of ushering in Joe Biden and Kamala Harris into the White House is a symbol of hope for the United States. For me, it’s hope that brutal killings of Black people, like George Floyd in Minneapolis, and Breonna Taylor in Kentucky will no longer go unpunished. It’s also hope that America realizes that under no circumstance is it acceptable for immigrants to be thrown into cages, or Black Lives Matter protesters to be tear gassed. Additionally, my hope is that no president will ever be as mean as Donald Trump was when he said to representatives Alexandria Ocasio-Cortez, Ilhan Omar, Ayanna Pressley, and Rashida Tlaib, “go back to your country.” Simply put, I hope that people in America return to treating each other with kindness and respect.

            However, we as people who are disabled or probably know someone with a disability cannot simply rely on hope alone. My beloved Sins Invalid community sent us a clear message in their most recent performance, “We Love Like Barnacles: Crip Lives in Climate Chaos,” that we need to love each other, especially in this time of climate chaos. One of the performers, Maria Palacios, known as the Goddess on Wheels, discussed issues around emergency preparedness. Painfully, this beautiful, brown, immigrant, disabled woman conveyed the fact that a lot of people with disabilities do not have the money, due to being on Supplemental Security Income (SSI), to buy enough food to prepare for an emergency. Nobody should have to worry about not having enough food. Lateef McLeod, another brilliant performer and a published author, expressed his concern of whether a person will take him out of his wheelchair in a fire. A memorable part of Lateef’s piece was when he mentions his anxiety about firefighters forgetting to take his augmentative communication device, which is his primary means of communication. Since Lateef is a Black Jamaican man, he also worries about whether the color of his skin will impact how first responders treat him. Again, no one should have to deal with any of these concerns. Bianca Laureano, an award winning writer and sexologist, also performed a powerful piece in “We Love Like Barnacles.” She very personally discussed her devastation around the President’s careless reaction to Hurricane Maria in Puerto Rico. President Trump did not do anything (except have a helicopter dispense some rolls of paper towels) to help thousands of people who lost their electricity and homes in the aftermath. There is absolutely no way in the world that this should be acceptable. All of these incredible artists’ stories demonstrate that there is definitely not enough love and human kindness on this planet. Even if the world is about to end, we need to go out treating each other with more compassion, love, and support.

Another great book that I think is important to read and discuss is Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc. Leduc, who has Cerebral palsy, brings her disability justice lens into her analysis of childhood stories. This author quite intelligently lays out several problematic themes that are hidden beneath the surface of these fairy tales. After reading this amazing piece of writing, I have a completely different perspective of the tales I grew up knowing and loving.

First, Leduc notes that fairy tales, for the most part, follow norms of white, heteronormative, and ableist society. Besides the obvious fact that these children’s stories usually center a male-identified prince and a female-identified princess who are in love with each other, there are numerous other ways that fairy tales exclude kids from marginalized communities. I don’t think there is an inherent problem with portrayals of heteronormative, white characters, but when that is all we see, we are not giving children of color the opportunity to see themselves reflected in popular media.

With all the books, dolls, dress up costumes, movies, tea party sets, and other paraphernalia Disney has created based on its princesses, it’s shameful that Tiana is the only Black princess (who spends most of the movie in the embodiment of a frog); there are no Disney princesses that are Latinx or South Asian. Looking at the Walt Disney Studios’ creative decisions even closer, there is so much more evidence that they operated under white supremacy. Behind all the magic and innocence of Cinderella’s fairy godmother and Flora, Fauna, and Merryweather, from Sleeping Beauty, was Disney’s choice to exclude characters of color and those with disabilities. Even in the more modern Toy Story movies, both of the main characters, Woody and Buzz Lightyear, are white. By mostly centering white characters, the Disney studio is sending a message to children that only white stories matter. This world-famous company needs to diversify its characters and plotlines, so that children of all backgrounds can recognize themselves in the content they consume.

Leduc, also points out that several fairy tales tend to align with the medical model of disability. Interestingly, Leduc views Cinderella’s fairy godmother transforming her clothes from that of a lowly scullery maid to that of beautiful princess as a metaphor for those who want to transform people with disabilities into what they consider “normal.” Likewise, the beast from Beauty and the Beast physically changes after receiving the affection of the person he loves. It begs the question why the beast finding happiness physically changes him, why is being “fixed” somehow a great reward for doing morally right? 

Another fascinating fact explored in the book is that only villains, such as Maleficent from Sleeping Beauty and Ursula from The Little Mermaid, can stray from society’s ideal of beauty. Only having villains be fat or differently formed says to children that being different is somehow inherently wrong. Why can’t Disney princesses be fat or disabled or old or scarred in any way? Disney princesses and other good characters should not be pigeonholed into this idea that beauty has to mean an able-bodied, cis, heterosexual, white woman. Human diversity is beautiful and needs to be more represented in the morally upright, not just evil.

On the 30th anniversary of the Americans with Disabilities Act, Crip Camp: The Official Virtual Experience, an online workshop about different topics pertaining to the disability community, featured Leah Lakshmi Piepzna-Samarasinha. Ms. Piepzna-Samarasinha, an amazing, queer, disabled, femme, writer of color, wrote one of my favorite books, Care Work: Dreaming Disability Justice. Why is this piece of writing so important? For one, this author has called for a change in perspective on personal care. Ms. Piepzna-Samarasinha pointed out that people with disabilities sometimes can help our friends with disabilities with grocery shopping, laundry, or medication pickups from pharmacies. Patty Berne’s principle of disability justice, interdependence, which Ms. Piepzna-Samarasinha has advocated for, is revolutionary. Instead of being dependent on able-bodied, paid, employees, members of the disabled community can rely on each other. 

Recently, students at University of Southern California (USC) have adopted this philosophy of mutual aid and created the USC Care Collective to help meet the financial needs of their classmates, especially those who are undocumented. Since students who are undocumented unfairly do not qualify for President Trump’s Covid-19 aid, they have to depend on one another (link below. Since USC’s administration failed to allocate any of its COVID-19 relief funding to those in marginalized communities, the students had no choice but to solely depended on each other. This is one important example of how disability justice could be applied in today’s world.

In another part of this extraordinary book, Ms. Piepzna-Samarasinha passionately calls for fully accessible performing spaces. The writer recalls how after being a participant in a Sins Invalid production, the theater immediately removed the wheelchair ramp. If accessibility was in the forefront of planning theatrical performances, people with disabilities could more easily be actors, costume designers, directors, set designers, and stage managers, instead of just audience members. If creative spaces were fully equipped to meet the needs of all people, regardless of ability, this would inherently give people with disabilities more opportunities to share their stories authentically. 

Ms. Piepzna-Samarasinha also notes that we need to think about accessibility in a much broader context than simply finding a wheelchair accessible theater. She urges directors and producers to also ensure that theaters consider the access needs of people who are blind, deaf, or sensitive to strong fragrances. Theaters need to provide programs in Braille, sign language interpretation, low scented environments, and quiet rooms for people who are sensitive to different sounds. When these necessary tools for access are readily available, all members of society will be able to enjoy live performances equally. This author pushes society to think about accessibility from the disability justice perspective, and this is the way of thinking we must adopt. 

Additionally, Ms. Piepzna-Samarasinha discusses the importance of healing justice. For me personally, the word healing has always had a negative connotation. This is because growing up in a mostly able-bodied town a lot of people would try to heal me of my disability, even when that was not my desire. Whether at a high school event or in the grocery store, I was constantly being told that I needed to be fixed. Having this message repeatedly being said to me as a young person made me falsely assume that my disability was an individual, and not one created by society.

However, Ms. Piepzna-Samarasinha is referring to something completely different all together.  In this brilliant book, the writer advocates for people to go through a process of healing from generational ableism, racism, or any other form of oppression someone and their ancestors may have endured. We need to heed this ingenious author’s wisdom, especially considering the imperial and genocidal history of the United States. 

https://dailytrojan.com/2020/05/26/website-raises-funds-for-students-in-need/

About a year ago, Sins Invalid held a workshop on intimate partner violence in the disability community. One of the pieces discussed was a New York Times article about Anna Stubblefield. Anna was a white teacher who helped DJ, an African-American man, who had Cerebral palsy and was nonverbal to learn an alternative form of communication. When Ms. Stubblefield admitted she had intentionally touched DJ’s private parts, she was automatically accused of and put on trial for sexual assault.  There was no question of DJ’s consent, most likely because people assumed that he was asexual. Even this assumption minimized DJ’s capability to make his own decisions about his sex life.

Another important article that was discussed during this workshop was “Disability Should Be Integral to the #MeToo Conversation.”  The #MeToo movement was supposed to be a platform for every woman to share their experiences of sexual abuse. However, the author pointed out that most of the social media posts featured “white nondisabled cis women.” Women with disabilities, women of color, trans, and non-binary people should all have an opportunity to have their truths be known. Whether someone with a disability is recounting his or her nightmare of sexual violence, or a person who is disabled, perhaps like DJ, who wants to have sex, everyone’s story should be validated.

https://www.nytimes.com/2018/04/05/magazine/the-strange-case-of-anna-stubblefield-revisited.html

https://rewire.news/article/2017/11/01/disability-integral-metoo-conversation/

                                                                                                                     

Coronavirus is creating a time of extreme loneliness for a lot of people, especially for those who live completely alone. One of my best friends, Andy Arias, who has Cerebral palsy, has been by himself in his apartment in Washington D.C. for more than 40 days. During this time of quarantine, Andy has realized the importance of his friends in LA, who are his chosen family, and he has decided to move home to us. Below is the link to Andy’s GoFundMe that we made last weekend for his birthday to help him with moving expenses. While I know this era of the coronavirus is financially challenging, I also know that one of the main tenants of disability justice is interdependence and helping each other. So, please give whatever you can.  

https://www.gofundme.com/f/help-our-magical-unicorn-andy-get-home-to-la

The coronavirus is extraordinarily scary for all of us. As of April 24, 2020, there were 50,243 counted deaths in the United States from this horrible virus. A lot of people are losing their jobs as well. People with disabilities especially are frightened during these most uncertain times. Doctors are rationing masks, ventilators, and other necessary medical supplies, without prioritizing the lives of members of the disability community. It’s no wonder there is so much anxiety and fear in the world right now.

So, what can be done in such a moment of crisis? First, we can read “Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine,” by Leah Lakshmi Piepzna-Samarasinha (link below). Piepzna-Samarasinha, a writer on disability justice, offers us several helpful tips about food, sanitation, and mutual aid for surviving the coronavirus as a person with a disability. She acknowledges that some people may not have the finances to stock up on necessities and suggests alternatives. While she does offer solutions for those in need, we must also urge government officials to heed the advice of social activist, Shaun King. In an episode of his podcast, “The Breakdown,” Shaun King pressures both landlords and politicians to disregard rent and utility bill payments during this time. Between the currently high rates of unemployment and institutionalized ableism and racism that inherently create obstacles to employment, a lot of people do not have the economic resources to deal with this unprecedented state of the world. People should not be forced to choose between a home and a meal; mutual aid should not be rent money. #Nobodyisdisposable #ICUgenics

https://docs.google.com/document/d/1rIdpKgXeBHbmM3KpB5NfjEBue8YN1MbXhQ7zTOLmSyo/dit

While I realize that I have been writing a lot about inclusion and diversity lately, this post also gives a personal glimpse into one of the most empowering experiences of my life. In 2016, during my first year at UC Berkeley, I was accepted into The Vagina Monologues. For those of you who may not know, The Vagina Monologues is a performance of a series of vignettes related to the experience of being a woman, commonly coupled with original pieces written by the cast. I was lucky enough to be chosen to write an original piece about being a person with a disability and not feeling sexy. In one line, I talked about how I use to watch all those hot, steamy, sex scenes from Grey’s Anatomy, but somehow could never picture myself in the scenes because of my disability. The purpose of that line was to shed light on the fact that society believes that people with disabilities are asexual, and to challenge this faulty assumption. Being able to discuss disability and sexuality in a live theatrical production was extremely powerful.

The Vagina Monologues was an exceedingly influential time in my life in many other ways as well. This was one of the first time that I had the chance to perform live. In high school, the drama teacher did not allow me to audition for their production of “Beauty and the Beast,” because they did not want a person with a disability in the show. At UC Berkeley though, the wheelchair did not matter, and this helped greatly in my confidence to express myself honestly on stage. More importantly, through this process, I made really good friends (Jas, Ace, Devin, and Christine, to name a few.) Having friends was a new concept, because while in an all abled-bodied high school, I didn’t really have friends. Two of my other friends, Mayra and Victoria, created the most unbelievable piece about the real hardships that goes along with trying to cross the Mexican border, in order to live a life without danger in the United States. If we approach undocumented people who need to come to America with compassion, instead of throwing them in detention camps like President Trump has done, the world would be a much better place.

Netflix’s “Crip Camp” is taking the world by storm! This film, produced by former President and First Lady, Barack and Michelle Obama, tells the story of how the activists who spearheaded the Disability Rights Movement were inspired by their time at summer camp as teenagers. Much of what these important people with disabilities shared about their memories of camp strongly resonated with me emotionally. For example, when Judy Huemann, an internationally recognized leader of this movement who has Polio, was talking about dating for the first time at camp, it reminded me of my own camp experience. As a person living with Cerebral palsy, I found my life partner at camp. Another relatable moment was when Jim LeBrecht, the co-director who has Spina bifida, was discussing how although he had friends in high school, he didn’t have any friends with disabilities except for at camp. Being mainstreamed into an able-bodied high school, I know what it’s like to be isolated most of the year and to only have a true sense of belonging at camp.

Later in the movie, we witness Judy Huemann and other camp attendees organize the 504 Sit-in. The 504 Sit-in was about trying to advocate for the ratification of Section 504 of the Rehabilitation Act of 1973, which prohibits the exclusion of people with disabilities from anything that is federally funded.  This is an undoubtedly worthwhile cause to protest for. The Black Panthers, a famous Civil rights group, assisted the activists with disabilities by delivering food to them. Yet, I couldn’t help but notice that most of the prominent leaders of the Disability Rights Movement were not people of color. Why? Is it because people of color did not have the opportunity to have their experiences and/or stories be expressed at the sit-in? Alternatively, did the filmmakers of “Crip Camp” simply decide not to include the perspective of people of color as much as the points of view people who are white? Either way, “Crip Camp” is a move in the right direction in including people with disabilities in the media, but it only touches the tip of the iceberg in celebrating true diversity.

https://thehill.com/changing-america/respect/diversity-inclusion/490120-how-the-directors-of-netflixs-crip-camp