- Nurturing Black Disabled Joy by Keah Brown
- This reading was about Brown’s journey to finding joy in life. It is Brown’s journey to being unapologetic in terms of race and disability, fighting the stereotypes and choosing life instead of allowing misery and anger to take over. Throughout the piece, Brown also argues that joy and hope are precious and that they need to be held onto and found in every day life. We must choose to live.
- “Unfortunately, we live in a world that believes joy is impossible for disabled people” (117). “So I live as unapologetically as I can each day.” (118). “Instead of saying what I hate about myself, I spoke aloud what I liked about myself.” (119).
- I personally did not enjoy this reading as much as I enjoyed others within this collection. I thought it felt rather out of place. I understand self love and choosing to live life and find joy is a big part of the disability experience but I felt like it didn’t focus on the disability aspect as much. I felt like I didn’t get much out of it, the takeaways are ones we hear as children all the time. I understand that it’s different in terms of race and disability but that wasn’t spoken about much in this piece. So my first takeaway is that we don’t always look for joy in life, but we should. My second would be that happy, colored, people with disabilities need to be made prominent in pop culture in order to end stereotypes that people with disability are negative and not embracing life because of it.
Review
‘Crip Camp’ Could Be a Class Success!
(Author’s Note: None of the 62 chapters from Keywords are titled “Law”, so I chose Chapter 52, “Rights”, by Maya Sabatello, because I’m guessing that’s what the professor meant. It’s the closest, anyway.)
Hey You, Teacher,
If it were implemented in your Social Studies II class curriculum this semester, I think Crip Camp (2020)—yes, that Oscar-nominated, Sundance premiere documentary that was produced by the Obamas—would be of substantial educational value in teaching the full history of the American civil rights movement to your classroom.
First, let me offer that the disabled position in America remains largely unacknowledged in our humanities classrooms. The significant piece of American history covered in Crip Camp is retold colorfully by the leading rights activists for Disabled in Action, including Jim LeBrecht, Judith Heumann, Corbett O’Toole, Ann Cupolo Freeman, and Denise Sherer-Jacobsen, ALL of whom are accomplished authors in the field of disability studies as well—which is something to provide extra material for your potential unit on disability rights. It’s a fast-paced documentary about the fight for American civil rights, filmed from the ground floor of the sit-ins and the sidewalks of the protests.
The documentary follows the above cast during their youth at the disability-centered “Woodstock” (Ann Freeman) which brought them together and shaped their confidence—straight on through their fight to get Act 504 signed, a critical piece of civil rights legislation which was first vetoed by Nixon (quote: “it would be just impossible in terms of cost”), but later weakened and delayed under Secretary Joseph Califano, with all attempts to enforce the act abandoned by Reagan in a horrendously bigotted effort to deprive the largest minority group in the country of their rights to protection from discrimination in federally funded public spaces (and in organizations and businesses nationwide). Because the fight still continues, your classrooms, were they to include Crip Camp in their curriculums, might notice one term continually appearing—rights. But the fight for disability justice does not only include these adoptions into law, like Act 504. Rights is more complicated than that; which is almost exactly the message of Crip Camp going into today’s world. Perhaps it would allow your students to expand their perspectives on discrimination, society’s attitudes, and law.
Maya Sabatello’s chapter “Rights” from Keywords for Disability Studies offers that “basing disability claims for justice merely in terms of legal rights, without a concept of moral rights, is inadequate”, because if the legal rights were boiled down to their core, it would be exposed how “Traditional Western liberal theory assumes that rights are private, individualized, and autonomous”. Contrary to this, the interest of disability activists, including those in Crip Camp, has always been on “group rights”, which “focus on collectives that have shared interests and aim at protecting cultures, ways of life and practices that are presumably not sufficiently protected by the assertion of individual interests” (page 159). So, as Crip Camp’s core activists (along with machinist unions, Black Panthers and supporters) persist through three weeks of hunger striking, months of government sit-ins, and a generation of “really serious, radical action” (Jimmy LeBrecht), they fight for their rights in the law, but also for their rights to exist together as an identity without friction or hardship. Sometimes this can be as plain as the right to not be “sidelined” (Judy Heumann) in a public space with your presence, but other times these rights are less obvious to the nondisabled, like the right to privacy. As one Camp Jened camper, Nick, put it: “I think what Nancy is talking about is that everyone in their life sometimes wants to be alone. I think that’s one of the major rights.” The story really only begins with Act 504, but Crip Camp teaches students to fight for the full extent of their rights, the way Sabatello describes.
So, Sabatello’s understanding of legal rights and group rights, together, helps encapsulate Disability in Action’s goals and expectations for the implementation of Act 504. And although the world has come a long way from the incomprehensible atrocity of the institution-era, you may still be tempted to avoid showcasing this film to your classroom because of its graphic depictions of abuse in institutions like Willowbrook—I urge you not to. Though uncomfortable for students, that scene provides additional understanding of the stakes of this fight for civil rights by the disabled in America. It was not very long ago.
Of the above reasoning, might I add—aren’t these EXACTLY the kinds of topics you’d want to use to stimulate class discussion? What does Social Studies in American classrooms concern at its heart, if not the rights and freedoms of the country? As the famous clause “all men are created equal” has taken nearly 250 years to prove effected, much of that catch-up is contained already in your Social Studies curricula—and here is one more opportunity for learning. The relevance in humanities classrooms is abundant, across the board, but this is magnified by the under-evaluation of the disabled position in history as a minority group. As Corbett O’Toole said in Crip Camp, “There are moments when history shifts”. This film is an artful reliving of one of the most important ones of the last century. I hope that your Social Studies curriculum this year does not overlook a highly educational piece of American literature which could be supplemental to your classroom’s emergent concept of rights and freedoms.
Sincerely,
Clover
A Future High-School Teacher
Camp and Politics
Crip Camp is a very insightful and informational documentary. I think this movie should be seen by students for multiple reasons, a large one being the understanding of activism. Activism is the taking of action, specifically in a political or social setting. The film highlights the ins and outs of a disability activist group and how they went about advocating and fighting for their rights and the changes they wanted to see in the world. I think this is important because all of their actions as a group were nonviolent. They relied on sit-ins, hunger strikes, and information to change the minds of politicians and citizens in America. Not only that, but the film also shows how different groups of people come together for common causes. To support and learn from each other, an example of this is the Black Panthers group providing meals for the disabled who were protesting inside a political building for over twenty days, “A broad array of nondisabled ally groups supported the twenty-five-day occupation by disability activists of the HEW regional headquarters in San Francisco.” (23).
I think this is important for students to learn because it not only gives them the inspiration to fight for what they believe is right in a nonviolent way but how to advocate and help the community around them in order to improve the lives of others. The film shows a sense of community and comradery throughout the film that is a valuable thing for a child to learn and understand, find happiness in a community, relate to others, and be able to learn from them. I think this documentary will also teach high school students about disability and what it is to be disabled. It’s an accurate representation of the experience of those with disabilities and widens children’s minds to how to incorporate them into their lives, to look at their peers and the people in their community as people first, not defined by their disability the way society often phrases it.
Furthering Conversations: A Review of “Disability Visibility”
“Disbability Visibility” is a compilation of essays and short-stories from the 21st Century written by people with disabilities. Compiled by editor Alice Wong, the essays and short stories feature narrative glimpses of the lives of each author, from childhoods to relationships, from careers to activism, each story has follows the thread of disability into the intersections of everyday life. “Disability Visibility” is an anthology written both for the people who have never felt seen, and for people who want to expand their horizons and understand the complexity of our human nature. It is a chance for the authors to amplify their voices, their impassioned words giving insight into our perceptions and the reality of just how every experience is unique. It is a chance for the reader to grow in empathy and understanding towards your neighbor, and a must read for those who want to explore disability and intersectionality from a lived-experience perspective.
Authors like Shoshana Kessok, who walk the reader through the complexities of the medical system and the misguidance of bipolar disorder, help readers to get a glimpse of the fallacies of healthcare. But Kessok doesn’t leave the reader with the complications of getting your medications adjusted and the never ending appointments. Rather, they acknowledge that once you receive the help you need, your life can stabilize, and reaching out for help is always better than suffering alone. They talk about the interweaving of mental illness with creativity and how so many people feel that real artists have to suffer (mentally, physically, emotionally etc.). Kessok says, “I read books about people theorizing about the connection between mental illness and creativity and I shake my head. I don’t need to know the connection, because if there is one, it doesn’t matter to me. I take my medicine and work my craft at the same time because I don’t need to suffer as an artist” (Kessok, 187). Stories like these battle against society’s preconceived notions and reveal the truth about mental illness, while also serving as cautionary tales of putting too much truth into stereotypes.
Each story is unique, as unique as the author who crafted them, and stories about feeling different are not uncommon. June Eric-Udorie speaks about how having nystagmus made her feel broken, always praying for healing that would never come. In “When You Are Waiting to Be Healed”, she acknowledges the desire to be without disability and the sometimes confusing choice one can make when coming to terms with the identity of “disabled”. But she also acknowledges the joy of understanding yourself. “I come to church happy in the body I exist in; I come to church knowing that I am not a mistake waiting to be fixed,” June says (Eric-Udorie, 58). June gives the reader an understanding of growth and healing beyond definition, providing concepts that may fight with the reader’s previous conceived notions of healing.
This anthology is a series of love letters to the understanding of yourself, a celebration of difference, and a reconciliation between the past and the present. It proves that there is no predetermined way of living, that there is a freedom in expression and value in being in relationship with others who share a thread of understanding. “Disability Visibility” works around the reader’s biases, scraping away the force-fed egregious narratives fed to us by society and replacing it with bubbles of the lived experience of people with disabilities through all aspects of life. Ariel Henley, whose essay titled, “There’s a Mathematical Equation That Proves I’m Ugly”, which redefines our understanding of beauty, sums up the artistry found in each essay with a beautiful quote about her experience. “But art isn’t necessarily about beauty. Art is supposed to make you feel something, and I began to realize my appearance was my art. My body, my face, my scars told a story- *my* story” (Henley, 46).
A compendium of innovation, beauty, and wholeness, “Disability Visibility” is a quick read, offering readers a chance to see themselves and to see the lived experiences of people with disabilities. This book shows readers how empathy is the answer, and how we get there is by viewing each and every person, just as they are, seeing the value in all of our varied experiences. 5/5
Invalid No More: Disabled Performance in “Sins Invalid”
Sins Invalid is a short film featuring a troupe of the same name from the San Francisco area. The troupe is composed of performers with varying disabilities who express their sexuality and experience on stage for a live audience. The film chronicles the creation and heart of the troupe, formed out of a need to shift the narrative of disabled sexuality from something grotesque or shunned to something visible and celebrated. Sins Invalid is an active performance to display the varying sexualities and sensualities of each performer and to give the audience insight into the beauty of disability.
When analyzing the film from a disability theory angle, it is clear to see the subversive nature of the film. Robert McRuer explains in his essay on “Sexuality” in relation to disability theory that, “exclusion from normality or a presumption that one could not be part of the heterosexual/homosexual system, in other words, sometimes allowed for disabled pleasures and disabled ways of knowing that were not reducible to dominant systems of heterosexuality that were dependent on ablebodied definitions of sexual norms” (McRuer, 169). Given that in the 20th century people continued to find ways to label disabled sexuality as “abnormal”, there is a need to break out of the othering that comes from heteronormative analysis of disabled sexuality. Sins Invalid as a performance troupe finds their own ways of subverting the narrative of abnormality, transforming the concept of disabled sexuality into something beautiful and sensual. This explicit subversion is emphasized in the lapdance performance of Maria Polacios, where she turns her wheelchair into an object of sexual mobility and sensuality. Something that the heteronormative society would see as abnormal suddenly appears erotic, freeing the label of disabled sexuality.
Patricia Bearne, Co-Founder of Sins Invalid, speaks in the film about there being a distinct lack of disabled bodies on stage, how people with disabilities need a space where they can perform and grow as performers. In a short story labeled “The Beauty of Spaces Created for and by Disabled People”, s.e. Smith defines the concept of crip space as “unique, a place where disability is celebrated and embraced- something radical and taboo in many parts of the world and sometimes even for people in those spaces” (Smith, 273). This is exactly the kind of environment that the founders of Sins Invalid have fostered. Leah Lakshmi Piepzna-Samarasinha expands on this concept by speaking about how the first time she watched the show, she was amazed and moved to tears by the the notion that the queer and disabled performers did not have to hide any part of their identity while on stage. Sins Invalid as a troupe is working towards freeing the boundaries that have been set by society for people with disabilities, expanding the definition of what it means to live free lives full of love. In Petra Kupper’s analysis of “Performance” in disability studies, she explains how in performances like these “the action moves out from the individual and toward communal action, and a staged performance becomes a way of presenting disability in public” (Kuppers, 138). For the people who are disabled in the audience, this is a celebration of the lives of fellow people with disabilities. For the nondisabled in the audience, it is a chance to see another facet of disability, one that has long since been locked away by society. All around, it is another chance for the audience to see how acceptance and support can create stunning and captivating narratives for all viewers.
As someone who is asexual, this would not be my first choice of a performance to view. However, I do understand the need to shift the current accepted narrative that people with disabilities are without sexuality or that their sexuality is otherwise repulsive. Interpretive performances are also not my first choice of visual performance, but I think that each scene represented in the movie has its own beauty. If I were to watch performances that are not overtly sexual, I would have an easier time enjoying them. But that is a personal preference to avoid blatantly sexual media. However, I am struck by the moments of spoken word, specifically the performance of Leah Lakshmi Piepzna-Samarasinha, relating her relationship to an adventure through the cosmos. And I can appreciate the stories that they are trying to communicate and the medium of which they are doing so, and I hope that they continue to find joy and freedom in their performances. From a professional standpoint, 4 out of 5 stars, from a personal standpoint, 3 out of 5.
Piss on Pity
The Kids are Alright is a short documentary breaking down the inappropriate and dehumanizing nature of Jerry Lewis’ Labor Day Telethon for folks with Muscular Dystrophy. Mike Ervin, an ex-poster child for Jerry’s fundraiser, speaks up about being exploited as a source of pity to raise money. The conflict of this film is the mistreatment of disabled folks and the saviorism that exasperates this mistreatment. The rhetor of this film, Ervin, explains his first hand experience in the field of disability activism – as a disabled person. Ervin tries to amplify the voices of folks living with MD in hopes of abolishing pitiful fundraisers like those held by Jerry Lewis and the MDA. Throughout the film Ervin uses storytelling as a means to get his point across. He addresses his own ethos, as a man living with muscular dystrophy. He uses pathos, by expressing his human reaction to being pitied. Ironically, the fundraisers he fights against use a false pathos (pity) in order to sell charity. Ervin’s logos show up through statistics of poorly used MDA funds and the wrong “cure”. What I mean is, the telethon only supplies 30% of the MDA’s annual funds and of that so much is allocated to fancy scientist conferences and advertising campaigns. Ervin questions the viewer what “a cure” for MD even looks like and how do we get there. Is it funneling money into politically charged conferences? Or is it providing disabled folks with chairs, ramps, autonomy, and resources? This film really had me questioning where “charity” funds are going and from whom they are requested. I couldn’t help but think, if this is how a white, seemingly financially stable, man is treated in the world, how are QTPOC disabled folks feeling. As mentioned in the film, disability is not a monolith, every disabled person is a human with individual complexities, and I’d love to continue to learn more from different facets moving forward.
Overall the film was 4/5 due to only focusing in on one man, rather than getting a few perspectives. Although, it almost feels backwards for me, as someone without MD, to be rating how MD is portrayed in a film. Hmph.
Unintended Orphans
The film The Kids Aren’t Alright gives us an inside look at what it is like to suffer from a disability and get unwanted and unhelpful assistance. The film centers the story of a telethon created by Jerry Lewis and the Muscular Dystrophy Association (MDA) that is meant to raise money and donations to help look for a cure to this condition. The film highlights that this telethon is counterproductive. The telethon is created to get people to pity and feel bad for people with Muscular Dystrophy, to guilt them into donating. Jerry Lewis and the MDA paint this unrealistic picture that people with this condition are suffering, that they are not able to live life to the fullest. That these people desire a cure for their condition, as if it is a requirement to live a full life. Jerry’s Orphans challenge this perception that Jerry Lewis and the MDA has created. They bring to light the fact that they can live happy lives full of love, happiness, and fulfillment and they are not looking for anyone’s pity.
The rhetor in this documentary is the creator, Mike Ervin, and his goal with this film is to bring to light the misconceptions and truths of living with Muscular Dystrophy. Ervin establishes his personal authority by speaking about his personal experience as someone with Muscular Dystrophy, he gets people to empathize with him by sharing personal stories of discrimination and hardships he has faced while bringing to light a corrupt system and organization. Him, and the rest of Jerry’s Orphans, go about trying to accomplish this by leading non violent protests during these telethons, handing out pamphlets, making phone calls to people in power, and simply educating people on what it is to be a person with this disability and what we can do to actually help them.
I give this film a four out of five stars. I think the film did a great job highlighting the voices of those with Muscle Dystrophy and explaining what is offensive, disrespectful, and ignorant about Jerry Lewis’s yearly telethon. It did a wonderful job depicting the actions and success but also the obstacles that Jerry’s Orphans have experienced and taken. The one thing I wish the film did was tell the viewer how to be of assistance. By watching the film I am know educated and enlightened on these people’s struggle and experience but the film does not tell me how to take action or in what way they would like us to help them with their cause.
Child Abandonment: How Jerry’s Orphans Sparked Thought
“The Kids Are Alright” is a short documentary filmed with the intent of showing the efforts of “Jerry’s Orphans”, a movement created by Mike Ervin. Ervin began the movement based on his experience as a poster child for the Muscular Dystrophy Association (MDA) and their yearly telethon. Ervin and his friends, other people with muscular dystrophy or close ties to it, began protesting Jerry Lewis’ yearly telethon that was produced by the MDA in the early 1990’s. Their efforts remained unrecognized and scorned even after sharing their personal experiences and how the telethon and the MDA were hindrances to their experiences, rather than boons.
During the documentary, Ervin explains how early TV icon Jerry Lewis created slanderous narratives toward the muscular dystrophy community and how the MDA’s efforts are more for personal gain than the gain for people with muscular dystrophy. When Lewis called those with the disability “half a person”, Ervin, born with mild muscular dystrophy, was outraged and disgusted that someone with no experience could ascribe such a concept to his life. Ervin and his friends, nicknamed “Jerry’s Orphans” as a satire of “Jerry’s Kids”, call attention to the fact that the MDA, TV station, and the volunteers involved with the yearly telethon have no right raising money for an effort that will not directly affect people with muscular dystrophy. Their pleas for people to stop pitying them and to actually learn about where the money raised by their efforts actually goes often were brushed aside. Audiences could not imagine why people who live with muscular dystrophy would be so against an organization working to fund a cure.
Those outside of the muscular dystophy community do not understand what it is like to live, and to thrive, with the condition. Volunteers for the telethon believe that they are raising money to find a cure, to put an end to this genetic disease, an act that they believe is charitable and good-natured. However, the constant dehumanization put forth by the MDA and its constituents remained an active agent of harm against people with muscular dystrophy. This film challenges the audience perception of these mass fundraisers and organizations that are often run by people with no ties to the disease. Jerry’s Orphans ask that instead of searching for a cure, we might instead start developing accommodations and changing the narrative of how we view people who have visible, or invisible, disabilities.
While “The Kids Are Alright” pulls no punches describing the affect of years of dehumanization from the MDA, it sparks a powerful thought that audiences should consider: am I listening to narratives of people with first-hand experience or am I trusting in pseudo-benevolent organizations with ill intentions? The film can be viewed for free on Ervin’s website, earning it a 5-star rating for accessibility.