Runway of Dreams is a nonprofit that strives to make fashion available to children with disabilities. Founder, Mindy Scheier, created Runway of Dreams after her son expressed that he felt peer pressure to dress like his friends, but couldn’t due to his Muscular Distrophy and wheelchair use. Scheier has partnered with Tommy Hilfiger and her designs can be found on their website. In the interview with National Public Radio, Scheier explained the success of her clothing line, writing, “ . . . The one incredible thing about the disabled market is that it knows no age and it knows no socio-economic background. So there are really consumers at every level, in every budget that are currently not being tapped into.” I found this article connects with the ongoing goal of accessibility within the various disability movements. Clothing is an area that can be inaccessible to people with and without disabilities, due to physical limitations and cost. Runway of Dreams addresses the physical inaccessibility of clothing, however the cost of their items may limit the amount of people who have access to them. On Tommy.com, the cost of one item of clothing ranges from $19.50 to $39.50. Although prices are relative, the limited amount of accessible clothing means that people with disabilities may pay more for accessible clothes than non-disabled persons. When looking for fashionable clothing lines to compare to Runway of Dreams, I found that Canadian fashion designer Izzy Camilleri created the IZ Collection, an accessible line for people in wheelchairs. IZ offers a range of styles for men and women at a price range from $12.99-$599.00. When looking at both lines of clothing from the perspective of functionality and cost, I think both lines have met the physical aspect of making their clothing physically accessible, however the limited amount of accessible clothing lines may lead to some stores having a monopoly on accessible clothes, driving prices up, and putting clothes out of reach for people who need them.
Johanna Hedva’s 2015 lecture and essay 2015 My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want it to Matter Politically (Sick Woman Theory) was immensely impactful for me last semester, and as the semester ends I think it would be useful to bring it to bear upon the work we did and the discussions we had this semester. In this light, I am particularly compelled by her politicization of chronic pain within a radical disability framework. Her contestation of the meaning of “political [public] space,” and her locating of pain within embodied legacies of racism, colonialism, capitalism and misogyny modifies existing critiques of the social model, repoliticizing chronic pain while simultaneously reorienting radical disability activism in the body and in spaces not conventionally considered “public.” Her mobilization of feminist mystic histories and practices additionally refigures the guiding embodied philosophy and approach of disability activism. Hedva demands an end to the isolating individualism of the myth of independence and argues for a future in which “we are all ill and confined to the bed,” engaged in a collective dynamic of care, vulnerability and dependence that might undo the productive motor of capitalism.
This is a performance piece by Hampshire College graduate Lyric Seal, performed in September of 2014. I wanted to post this to place it in conversation with the performances we watched in our last class, and also to extend conversations we’ve had in class about the relationship between sex, trauma, disability, queerness, time, consent and agency. Lyric Seal questions the embodied meaning of consent or nonconsent in the context of surgery/sexuality, as all but one of their surgeries were performed before they could or could not choose: “There is a difference between agency in consent. One I have, the other I do not have. In surgery, art, and sex, much of the sex is implied. This surgery, this last one, was the only elective surgery I have ever gotten. I have choices, not consent. My body’s trauma and recovery has no awareness of what I did and did not choose. The temporary psychosis that is produced by seeing your own flesh turned purple and green, loosening not only at the edges, bleeding from what might be pores, or new ports, is not alleviated by the words, ‘you asked for this.'” They probe feelings of (body) horror, revulsion and sex, and asks that we face and experience these feelings directly: “you are committing to the body that you occupy, or the body that you have given your attention, allowing it to turn you, turn your stomach, turn you on, move you around, pull you down, pull you in, make you come when called.” Their physical performance, with its repetitive choreography, pulling scraps of paper from inner thighs and under their dress, draws visceral attention to the body in a manner that recalls the burlesque of one of the Sins Invalid performances, but with a different erotic affect and towards new ends.
In the process of working with my group on our final project on sex and disability, I came across this website. It is essentially a compilation of information about ways to adjust particular sex toys to better fit one’s needs, or advice on what kinds of toys are most ideal to fit particular needs (ie: suggestions of what is best for folks with hypersensitivity or decreased sensitivity; lots of information about materials and allergens, etc.).
Most of the time toys are being marketed with the sole intention of selling as much as possible (what a surprise, capitalism). I appreciate that this particular site wasn’t really looking to sell people things but trying to help people figure out what might work best for them. The site also offers its advice in ways that are very class-minded; they list a number of inventive ways to repurpose common objects as sex toys.
Thought I would share!
CW: mention of child abuse/neglect
For another class (an English class at Smith about witches, witchcraft, and witch hunts), I was assigned Harry Potter and the Goblet of Fire as reading. In revisiting that text at this point in my life, I realized there could be enormous potential in a disability studies reading of the Harry Potter series. Specifically, I am thinking about trauma. (And I will focus mostly only the protagonist’s traumas, even though there are many other characters whose experiences could offer interesting insights).
There is no denying that Harry Potter goes through and lives with a lot of trauma throughout his life. Yet none of it is really recognized as trauma in the books (or if it is, the only way Harry is shown dealing with it is suppressing his emotions and persevere despite all odds; a lovely intersection of toxic masculinity and ableist ideology). Harry’s status as person reduced to sleeping under the stairs in the Dursley house is somehow romanticized as quirky, ie: Harry gets his Hogwarts letters addressed to him as “the Cupboard Under the Stairs.” But Harry’s forced occupation of that storage space is an element of the horrible abuse inflicted upon him by the Dursleys. It is also not cute or pleasing to know that Harry’s future school (and the people who placed him in the Dursley’s home in the first place) are aware of the abuse that happens and do nothing about it. So, I ask myself: what would be different if Harry Potter was written with mind to disability, trauma, and abuse, rather than brushing them off.
If Harry’s traumas and subsequent experiences of the affect of trauma were recognized diegetically, then I imagine that the very plot of later Harry Potter installments would cease to become possibilities at some point. Ie: care-givers for Harry would not ever allow him to live with the Dursleys again; Dumbledore would stop asking/ expecting Harry to do dangerous, anxiety-inducing things at the risk of facing violent people; the Tri-Wizard tournament simply would not exist (or would have existed but been cancelled for the well-being of all involved).
Imagine: a Harry Potter who has his traumas recognized and validated as traumas by people around him. A Harry Potter who comes to understand himself as disabled. What would happen? What would happen if this world-renowned series boasted a protagonist who was disabled? Would the Harry Potter series have had its wide-reaching scope and influence if it was written with mind to trauma and disability? How might my childhood had been different if I was exposed to texts in which the answer to every problem was not just to persevere, but sometimes to have limitations and to recognize them? The possibilities are powerful. I somewhat long to write fanfiction that incorporates a disability studies lens, as I think the results could be wonderful.
Last week on Facebook, I saw a news video about the deaths of three deaf women. Jesula Gelin, Vanessa Previl, and Monique Vincent were beaten, mutilated, burned, and their bodies left in a ditch in Haiti this year. Why? Because they were deaf and the murderers believed that was a curse. The video shares the there is a lot of discrimination and violence directed towards people with disabilities, especially women and girls. It states that the public outrage against these murders is “rare”. Leading me to wonder about what types of disability movements are occurring in Haiti.
We often talk about converging identities and oppressions, and how they create opportunities for discrimination, but mostly in a U.S. centered context. This framework marginalizes diversity among international disability rights/justice movements. It is important to explore other cultures’ conception of disability, as well as the structural discrimination that disabled people can be susceptible to. I would love to learn more about the disability movements in other regions.
Link to “Women targeted, killed for being disabled” video: https://www.facebook.com/fusionmedianetwork/videos/1404163132942994/
The Venezuelan movie, Liz In September, follows seven lesbian friends who have come together to celebrate the birthday of the main character, Liz, on a beach in Caracas, Venezuela. Early in the film, we find out that Liz has been living with a very aggressive form of cancer. Liz keeps the return of her illness very private, and only seen confiding in her best friend. She chooses not to go through chemotherapy again because of the deteriorating impact that western medicine has on one’s body. Liz shares that she refuses to spend the end of her life pitied by her loved ones, or subjected to surgery and aggressive treatments. In the film Liz falls in love with a woman named Eva, who comes to the beach to start over after her son died of cancer. When Liz decides to end her life via assisted suicide, Eva agrees to help her because she is sympathetic and understanding of her decision. The term “assisted suicide” is never said in the film, only hinted at. They never explicitly discuss the taboo topic of assisted suicide/physician assisted suicide. It is conveyed as a very personal decision that Liz makes for herself, by herself, and without any outside commentary from her friends.
Throughout our class, we talked a lot about how agency is given to, and taken away from, disabled individuals over control of their bodies. This agency should also extend to control of their deaths. We never discussed the decisions or politics around the choice of a disabled person using assisted suicide to end their life. The circumstances around having the choice to end your life, which is sometimes around receiving a difficult prognosis, are topics that we should discuss, in addition to the “cure vs. no cure” debate. It is important in the disability justice/rights movement to fight to have a better “quality of life”, as well as accessible resources; and in some cases, the right to have a life at all. This is why the topic of legalizing assisted suicide is on the margins of the movements, we are fighting for everyone with disabilities to have agency over their life, we should also work to make it equally accessible for people with disabilities to have agency over their deaths as well.
IMBD Link: http://www.imdb.com/title/tt2325833/
A federal judge ruled that Disney’s 2013 policy changes around visitors to their park who have disabilities do not violate the Americans with Disabilities Act. The policy changes made it so that instead of visitors with disabilities being allowed to move to the front of lines, they would now be given passes based on estimated wait times so that they wouldn’t have to stand in the line but would be allowed to return at the time that they would have made it to the front of the line.
The article implies that these changes have the largest effect on children with autism. It says that parents complained that the new policy lead to more meltdowns from children. It did not mention negative effects other than unhappy children or any disabilities other than autism (except for an implicit reference to mobility impairments through mention of wheelchair ramps.
Part of the ruling was that a blanket rule like the one instituted, rather than individualized care, did not in fact violate the ADA as plaintiffs alleged. I understand why this is the case but is telling of both the ADA and Disney’s priorities. If Disney wanted to actually show that it cared about visitors with disabilities it would provide comprehensive individualized services, but the corporation is probably more concerned with making sure they are policy compliant rather than actually providing care.
This article is about an ex-cop from New York City who retired because he hit a pedestrian on his motorcycle and is now collecting disability checks. It sounds like the woman who he hit was severely injured in the accident and he walked away relatively unharmed. It also sounds like the accident was completely his fault, but he sued the woman he hit, who ended up having to pay him $850,000. Now he collects $108,000 a year, and also has a job training police recruits to shoot.
I have contradicting thoughts about this article. On the one hand it’s just the story of an asshole cop who’s gaming the system so that he can collect taxpayers’ money for nothing, while also working a job where he trains more cops how to use weapons. On the other hand, the way disability payments are represented in the article makes them sound unfairly large, and unfair to anyone who is still able to work in some way. While it does sound illegitimate for this man to be receiving these checks, there are plenty of people who can work a small amount but still should receive some compensation from the state.
Today, Paulette Leaphart began a 10-week long, shirtless walk from Mississippi to Washington D.C. as a way to bring attention to the shame around women’s bodies and disabled bodies. Leaphart has had a double mastectomy, and she wants to push back against strict definitions and bodily requirements of femininity and beauty, and instead embrace self-definition. She also wants to present an image of breast cancer that is not “a pretty pink story wrapped up in a pretty pink bow”, not white, conventionally feminine, and relentlessly upbeat.
Here is an article about her walk and the documentary about it: (CW: mentions of child abuse) http://www.theestablishment.co/2016/04/30/meet-the-woman-walking-1000-miles-topless-with-double-mastectomy-scars/
When I saw the title of the article, I was worried that it would be ‘inspiration porn’ about how brave she is for having had a double mastectomy, and for being a cancer survivor. And there is some of that, but mostly the article represents the walk as Leaphart’s self-determined activism for her own goals. She wants to encourage other people to celebrate and talk about their scars, and perhaps be less ashamed about their bodies after seeing someone with scars like them. Beyond documenting Leaphart’s walk, the film is collecting other people’s stories about their scars, both visible and invisible. This project seems not to shy away from the painful part of disability and trauma, which is frequently not the case with mainstream narratives around survivors. It is meant to primarily impact disabled people, not be an inspiration.