Author: Djellibeybi

“Disability Visibility: First-Person Stories From the Twenty-First Century” – Review

Djellibeybi1 Comment

In our modern age, and in ages long ago, our responses to those with disability have been quite varied. But invariably, we humans tend to have two main responses to the disabled: pity and disgust. Pity that the disabled person can’t care for themselves without assistance or for their supposed “sufferings”, or disgust for much the same reasons. The book, Disability Visibility is an exercise in having a positive outlook to people who have disabilities. These people are not people to be pitied or disgusted by – they are human beings with unique opinions, thoughts, and outlooks, distinct from themselves and from the broader world. As the editor, Alice Wong, rights in her introduction to the book, “I am living in a time where disabled people are more visible than ever before. And yet while representation is exciting and important, it is not enough. I want and expect more. We all should expect more. We all deserve more. There must be depth, range, nuance to disability representation in the media.”.

Depth, range and nuance are what is presented in this book, Disability Visibility. All the author’s have different disabilities that affect their lives in different ways. They have unique social contexts that are distinct from each other. One of the author’s is a Muslim-American woman, Maysoon Zayid, who is an actor and comedian with Cerebral Palsy; her essay was about being able to follow her religious practices as a disabled person who can’t participate in the act of fasting. There is Wanda Diaz-Merced, a woman who was studying to be an astronomer and physicist before she developed blindness, and due to her blindness she and her colleagues developed a new way for her to analyze visual data through sonification. On the other end of the spectrum, s.e. smith wrote a story about the experience of watching an artistic performance done by people who are disabled, and what it felt to be a part of something that accepts them.

Not all the stories are going to be pleasant, or easy to read. Many of the author’s will hold opinions that are unpopular, but those are necessary for a full picture of disability. Ariel Henley talks about how a boy teased her for looking ugly due to Crouzon syndrome. Or Jen Deerinwater, who talks about how she was mistreated as an indigenous American with disabilities. Her story has more social commentary than most of the stories contained in the book, and it’s pretty damning social commentary indeed. But the stories also offer hope to those who read by presenting us with these stories, and how to help this marginalized group of people. It can be unsettling, as s.e. smith writes in her essay on the beauty of spaces for the disabled, “to be invited into our space. To be on the other side of the access divide. To see disabled people spreading their wings. […] Those in positions of power, evidently fearing that people are talking about them behind closed doors, persistently insist on barging into such spaces.” (Pg. 274)

This is just a small taste of the stories presented in this book, and there are many more. The stories are short and not difficult to read. They aren’t complicated or academic. They are simply stories that tell of the lives of the disabled. It tells of their struggles, hopes, desires and fears. It informs the nondisabled people about what it is like to live with a physical or mental handicap, and what to do to understand and help people with disabilities live their best lives as humans in our society. For the disabled, this book tells them that they are not alone, that they are not less than human because they are disabled, and that it is okay to speak out and tell their stories to the world, and that even though they are disabled, they can do great things. Alice Wong said it best, “I want things to improve even while grappling with this impulse, with the tension between “subject” and “audience”. I want to center the wisdom of disabled people and welcome others in, rather than ask for permission or acknowledgement.” Disability Visibility is a good starting point toward this lofty goal.

If You Can’t Fast, Give – RAB style response

DjellibeybiLeave a comment

“If You Can’t Fast, Give”, Maysoon Zayid, from Disability Visability

This chapter is comparatively short when it comes to the chapters of Disability Visibility, but I have chosen it because it explores a people, culture and religion that I have very little knowledge about. The chapter titled, “If you can’t fast, give” follows the perspective of the author Maysoon Zayid, a female comedian and actor (I had to look the author up on the internet to determine that she was a woman because she doesn’t give many indicators of her gender in the text.). She describes her experience growing up in a Muslim household, observing the feasts and sacred rituals of Islam as a disabled woman with cerebral palsy. Even though she was exempt from performing the fasting ritual due to her health, she often performed the ritual as a child, during Ramadan – a time to fast and forsake earthly pleasures. As she grew older, it became difficult for Zayid to perform fasting due to her health, and so she began to give to those less fortunate as an alternative fasting. Zayid encourages all Muslim’s who desire to observe Ramadan, but can’t do to their health, to not be ashamed, but to “channel their devotion to charity.”.

Quotations:
“Regardless of the heat, it’s fun to fast for Ramadan when you are in a country where the majority of the folks around you are starving.” – (Pg. 37)

“The Qur’an states clearly in Surah 2, Ayat 185 that those who have medical conditions are pardoned, so I was treated like a champ for fasting. […] I knew that fasting against the odds I had been born with, I’d totally get into heaven and, more important, would get amazing gifts for Eid.” (Pg. 36-37)

“I miss fasting, but I’m happy to take on my newest mission of reminding those who can’t’ fast that there is no reason to put themselves at risk. Muslims fast so they can suffer a little. It is important not to die in the process.” (Pg. 38)

Takeaways:

It’s a wee bit too short. I would have like to have known a little more about the author and her experience, but what she does talk about is enlightening and engaging. When it come’s to the Abrahamic traditions, I’m most familiar with Christianity and Judaism, and know comparatively little about Islam. I knew Ramadan was an important time in the Muslim calendar, but very little else, so to have that explained was very nice. I love the part about “receiving gifts at Eid”, Eid being the celebration that follows Ramadan. It shows that she is like any child – she is not completely selfless or anything; she likes the attention and gifts that come from the act of fasting. She talks about the difficulty of observing her religious rituals in America, and how we often think of these acts as evil, (It’s interesting to contrast it to the other Abrahamic traditions when they observe their fasting traditions, or to compare it to secular fasts for health or mental reasons. You may have your problems with Islam, but fasting as a religious observance shouldn’t be one of them.) In the end, she had to stop fasting because it negatively affected her health, but she was able to still find other ways to follow the tenants of her religion (after all, fasting is one of the five pillars of Islam, (along with tithing, pilgrimage, prayer, and the declaration of faith.) It’s nice to read an essay on the positive aspects of Islam.

“Sins Invalid” – I’M UNCOMFORTABLE.

DjellibeybiLeave a comment

Graphic imagery of sexual performances have always made me feel uncomfortable, (especially if I’m not particularly looking for it.); after all, “There can be few practices in everyday life that arouse such strong responses – both positive and negative – as sex.” (Keywords in Disability Studies – Sex, Margrit Shildrik, Pg. 164). So I was not really excited about watching the short documentary film “Sins Invalid”. Now that I’ve seen the film, I must say that it’s not as bad as I thought, but I still had a hard time watching it. The film follows the experiences of a theatre troupe each dealing with their own physical and mental disabilities, as they perform one of their performances on stage.

I had very little problem with the actual message of the film; people with disabilities should be able to develop strong romantic and sexual relationships, and most importantly, be able to express their love for sex and their need for intimacy and desire. People should not be forced to not have sex, or be sterilized because they are disabled, or feel like they don’t deserve love or children because they are physically or mentally disabled. The disabled need a space and a voice to express who they are as humans and individuals; “It is rare, as a disabled person, that I [author S.E. Smith] have an intense sense of belonging, of being not just tolerated or included in a space, but actively owning it[.]” (Disability Visability, Pg. 272). In my personal opinion, the performances were at their best when they talk about the women during the 50’s and 60’s because she was mentally disabled. The performance of the woman in the blue dress, talking about this story of sterilization and abortion was very compelling and heartbreaking. Another compelling performance was that of a deaf performer dancing. It was intriguing, because the dancer can’t hear music, but he enjoys the art of dance – why should he not perform dance, since it’s a unique art that’s distinct from music and is not dependent on it to be an art form? These sections where probably the best examples of “Crip space” as described by S. E. Smith, “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.” (Disability Visibility, Pg. 273)

When the film starts having very colorful language, describing masturbation and sexual acts between disabled people, or even displaying violent sexual displays – that is when it became difficult for me to watch. (Having descriptive audio playing didn’t really help very much – it probably made me feel more uncomfortable.). I have no problem with someone with disabilities enjoying sex. I’d encourage more people with disabilities to explore their sexuality. But I do not like watching people have sex. It’s a deeply personal and private act for me. And then there is the case of mental disabilities; when it comes to mental disabilities, it becomes hard for me to encourage sexual exploration, especially with another person (how can a person with developmental disabilities like severe-autism or Asperger’s properly consent to a sexual relationship?). It’s a hard debate. How much can someone with a disability consent to having sex, and how do you prevent sexual predators from manipulating the disabled for their own pleasure?

3/5 stars: This film, overall, has a positive message, and these people have the right to explore their sexual expression in whatever way they desire. I cannot honestly say that I will watch these kind of performances, because I don’t like watching sexual performance art, but it was certainly intriguing, and it certainly made me ask a lot of questions. Author S. E. Smith explains my apprehension very well in her short essay, the Beauty of Spaces Created for and by Disabled People: “The nondisabled people are hesitant, nervous, unsure about what to say in response to the work in progress we’d all been invited to witness.” (Disability Visability, Pg. 273)

CRIP

Djellibeybi1 Comment
Get this image on: iStock | License details
Creator: anuwat meereewee | Credit: Getty Images/iStockphoto
Employees Men and women face a dazed question with a question mark on the head.

“CRIP” by Victoria Ann Lewis, Keywords from Disability Studies (pg. 46-48), Adams, Rachel, et al. 2015

Summary:

This section of the book “Keywords from Disability Studies”, goes over the history and use of the colloquial term, “Crip”. Crip, in the words of Victoria Ann Rice – the author of this section – “is the shortened, informal form of the word “Cripple”.” (Pg. 46). The term has it’s origins in the late nineteenth and early twentieth century as an identifier or slang term, especially for collegiate sports in the 1920’s.

During the civil rights movement, the term is comendered by the disability civil rights movement in the 1970’s. Most likely influenced by the Women’s Rights and Civil Rights Movements of the 50’s and 60’s. According to Victoria Ann Lewis, the term “functions as an alternative to both the old-fashioned and rejected “handicapped person” and the new, more formal terms “disabled person” or “person with a disability,” both of which gained official status as the preferred terms for standard usage in the mid-1980s.” (Pg. 46).

It was interesting to read this; I did not realize that “handicapped person” was an offensive or rejected term. At risk of being offensive and insensitive, I’ll continue my argument: handicapped does not face the same stigmatism or vitriol as words such as “The N-word” for black people (which wasn’t originally intended to be offensive when in use in the 19th century – merely a descriptor – but has rightly become the subject of offense and vitriol.) I’m beginning to wonder if we should view the word “handicapped” in the same way we view the N-word, because I still used the word Handicapped fairly often (though it’s often to describe a physical disability rather than a mental one: I rarely call someone with mental disabilities “a cripple”, (and I tend to read old books and have many archaic or eccentric views on the world; I’m not saying it’s right – It is what it is – I digress.).).

It’s always interesting to read about how groups tend to adopt the names that where used to humiliate them, the textual example being the word “queer” for the LGBT community (Ah, the good old days, when it was just “LGBT”) or like in the early Christian movement, the word Christian was used to describe people who followed “the way”, and how Christian’s used to be called “Atheists” because they only followed one God (I always found that rather amusing). Many groups like to commandeer offensive names as a form of self-deprecating humor, (the song “Jesus Freak” from DC Talk comes to mind, or the way non-christians will often call themselves “heathens” in front of their Christian friends).

I’m not exactly sure how words like “cripping” or “cripped” are supposed to be used. I’ve never used them before, and I doubt I will have much occasion to use them in future, but things change. If someone where to explain what exactly they mean by these verbs, then I may gladly adopt the term in the same way I’ve adopted adulting (though, to be fair, I don’t like that term either and rarely use it. What can I say, I’m an old fashioned kid). Part of me just asks “why use these terms at all?”, which is partially answered in the paper in the following quote: “[…] the power of claiming either “crip” or “cripple” comes from the “seminented history of its prior usage,” and the capacity of both words to injure.” which sounds slightly masochistic to me, but there’s some form of sense to it.

The article pulls a lot of comparisons between the LGBT community and the disabled community. Both having their terms and titles that have stereotyped and that they wish to “redefine” as some kind of power statement. But how much power can you have by controlling the language. After all, if you redefine what a word means, it probably won’t be long before a new word comes around to take it’s former station, or perhaps the word or phrase will default to it’s prior definition. How much power do we individual people have over people when it is the public who really defines what they mean and who determines their usefulness?

Crip Camp' Brings the Inclusion Revolution to the Oscars | Human Rights Watch
This film was the only time I can recall ever hearing the word “Crip” used before this class. Even so, I barely remembered this movie, and I’ve never seen it before. It might be an interesting watch – I’m curious.
Credit: Human Rights Watch, https://www.hrw.org/news/2021/03/23/crip-camp-brings-inclusion-revolution-oscars

CONCLUSIONS

The article describing the history and use of this term was an interesting read, although I do think that I was left with more questions than answers. Crip is an odd word, to be frank; the people who use that word are a unique group. I’ve never heard of this word before this class, and I think it’s unlikely that I will ever use it much in conversation outside of this course. But, if the person to use this word (as an identifier, or a descriptor, or in verb tense) desire to use it, and if it does no harm to the person using it or being described by the term (and I’m not one to care for personal feelings very much, except in a general form of respect to everyone.), then I see no harm in the use of such a flowery euphemism.

“Claiming Disability: Knowledge and Identity – Reassigning Meaning (Pg. 8-33)Annotated Bibliography

Djellibeybi1 Comment
This image has an empty alt attribute; its file name is IMG_20210921_190044883-1024x768.jpg

Linton, Simi, “Claiming Disability: Knowledge and Identity” (Pg. 8-34, “Reassigning Meaning”) New York University Press. 1998.

This source discusses analysis the affects of certain words and phrases used to describe the disabled and their conditions, with a particular emphasis on harmful or dangerous stereotypes. The author desires to inform the public of harmful ableist rhetoric and vocabulary in popular culture, in the same way we consider sexist or racist language. “The present examination of disability has no need for the medical language of symptoms and diagnostic categories.” (Pg. 8) Even terms such as “disabled” and “disability”, the most used terms for their respective subjects, can and do have harmful stereotypes associated with them, due to the origin of the terms being medical in nature. “The decision to assign medical meanings to disability has had many and varied consequences for disabled people. […] the medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy.” (Pg. 11) Those who live with disability’s and those in disability studies (namely, Simi Linton), desire to redefine harmful descriptive words, like “cripple”, with more positive definitions, as many people with disabilities wish to not (or don’t) feel inhibited by their diagnoses. The desire of this group of people is to “take control” of the language surrounding disability and conform it to their purposes to help with communication and better representation of the disabled peoples, and in many cases, they have, “over the past twenty years [before 1998] disabled people have gained greater control over these definitional issues. The disabled or the handicapped was replaced in the mid-70s by people with disabilities” (Pg. 13). Clear and to the point, this resource is helpful for starting a conversation on rhetoric and what the disabled and nondisabled may consider harmful language around the subject of disability

Personal note: this article seems to have a Marxist bent (especially when it comes to the subject of “redefining terms” and “control” over language, rather than being “subject” to it. An interesting thought that I did not want to include in the main abstract but that I wanted to make aware.).

Kerry Richardson’s “The Children Will Be Fine” – Wesley Hager

Djellibeybi1 Comment

I must confess that I did not enjoy watching the film “The Children Are Alright”, and that this might color how this review is perceived. I will try to be as kindly as possible during this review, but I ask for your forgiveness if I give any harsh opinions. They are mine alone, and just because I didn’t enjoy it, does not mean that you shouldn’t.

Our story starts back in the early nineties, with the certain venerations of one Jerry Lewis amongst the Muscular Dystrophy Association (MDA) for writing a piece describing the plight of people inflicted with muscular dystrophy as “a steel imprisonment”. Jerry Lewis was the host of the telethon hosted by the MDA, and he would often bring young children with muscular dystrophy (MD) to generate sympathy on the telethon. The telethon is designed to assist people with MD and to fund cures for MD. However, the former poster-children of the MDA and Jerry Lewis, had grown up to develop a disdain for the Telethon, the MDA, and Jerry Lewis – calling themselves “Jerry’s Orphans”. The film follows Mike Ervin, one of “Jerry’s Orphans” who was on Telethon’s during the 60’s, who grew to resent the MDA’s manipulation of people with MD and their loved ones.

The MDA would tell people that the telethon was a necessary element of getting funding, but Mike Ervin and “Jerry’s Orphans” state that the telethon contributes little of the MDA’s funding and that the majority of the funds raised from the telethon go to organizing events, rather than to helping others with MD.

An interesting point is made by Mike Ervin during the film: the money raised from the telethon are supposed to be used to fund a cure for MD. But many of “Jerry’s Orphans”, after having grown up, have resigned themselves to the fact that they will never find a cure to their condition, and that they probably wouldn’t want one even if they had. “Jerry’s Orphans” don’t want to be pandered to or become the objects of pity from self-righteous philanthropists. This is perhaps the primary message of the documentary, and while they have my sympathies, I found they’re methods and rhetoric betrayed a violent need for retributive justice which I found displeasing. But I also understand their criticisms of the MDA, and that much of their anger is justified – having been manipulated by a corrupt organization that lacks transparency. I honestly have mixed feelings about this film, and I don’t fault anyone who does not know who they should support in this argument.

Rating 3.5 stars

Not bad, but didn’t enjoy it very much.