disability visability

Institutions vs. Community

unsureunderwaterobot1 Comment
  1. The title and author of the source 

Ricardo T. Thornton, “We Can’t Go Back” 

  1. An objective summary of the reading 

Thornton begins by stating their credibility as someone who has lived in institutions and battles the inequitable (nonexistent) support system in the United States. They explain their experience in institutions, specifically Forest Haven. They explain the dangers of living in an isolating environment in which individuals are not encouraged to engage in the community. Thornton explains the transition out of the institution and into group homes, then family living. They explain their involvement with Special Olympics. They use this involvement as an example of just how capable disabled people are. Out in community, Thornton is capable of so much more than when they were at Forest Haven. The chapter is summed up and given agency. The author closes by explaining how essential support and opportunity is for folks (especially mentally disabled folks) to grow.  

  1. 3 or more quotations (with page numbers) 

“When people are given a chance to grow and contribute, they grow and contribute” (Thornton pg. 88). 

“Segregating people is always bad; people never grow in those places and are safer and happier in the community” (Thornton pg. 89). 

“In the institution I didn’t get to think for myself. The staff thought for me and made all my decisions. For a long time, no one expected anything of me” (Thornton pg. 85). 

  1. A personal reflection naming 2 or 3 take-aways from the reading 

I was drawn to the distinction that the author made between “the institution” and “the community.” Thornton makes a strong comparison between living institutionally and freely. I think I take advantage of the ways community comes so easily to me. I am given opportunity after opportunity to grow and contribute, which so many folks are not. I was struck by one of the authors closing remarks, “the only thing that is special about me (in comparison to other people with mental disabilities) is that people believed in me and in my potential to learn in spite of my disability, they took the time to help me learn” (Thornton pg. 89). This quote connects closely with the social model of disability. It is the world around the disabled that makes them that way. 

De-Centering Whiteness to Make Room for Black Joy

unsureunderwaterobot1 Comment
  1. The title and author of the source 

Keh Brown, “Nurturing Black Disabled Joy” 

  1. An objective summary of the reading 

Brown begins by identifying themselves as a Black woman with CP, who strives toward joy in a world that assumes its absence. She states her argument that emphasizes inclusion within (and outside) the disabled community, in a way that de-centers whiteness. Popular culture sees disability through the lens of a cishet white man who is a wheelchair user and hates his life. This image is a monolith and erases the author; she aims to combat this. Her end goal is joy and the agency to live fully. Using the hashtag #DisabledAndCute, Brown broadcasted her joy. She says that her perspectives often leave people angry or confused, but that. The quote is included below, but she states that days in which joy is absent, it is important to remember, feeling at all is a gift. 

  1. 3 or more quotations (with page numbers) 

“No one should have to be happy all the time- no one can be, with all the ways in which life throws curveballs at us. On those days, it’s important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life.” (Brown pg. 119) 

My joy is my freedom—it allows me to live my life as I see fit. I won’t leave this earth without the world knowning that I chose to live a life that made me happy, made me think, made me whole. I won’t leave this earth without the world knowing that I chose to live.” (Brown pg. 120) 

In response to readers who were confused, frightened, or angry, “… reacted defensively because they’re not centered in my story– because I am calling for inclusion that decenters whiteness.” (Brown pg. 118) 

  1. A personal reflection naming 2 or 3 take-aways from the reading 

I thought this reading was a brilliant depiction of intersectionality (intersectionality or die). The author takes note of their identity and experiences, then forms an educated notion that centers the lives of those who most frequently experience marginalization. She is aiming to reframe thinking; away from cishet white guys, to Black disabled womxn; away from the despair life may throw at you, to the joy that exists! I hate commenting on this, but this piece was very accessibly digestible (even my old-fart of a father could read this and gather something from it). Brown successfully drops knowledge and encouragement, while challenging the reader to be better. 

Communal Success

turtle1 Comment
  1. We Can’t Go Back by Ricardo T. Thornton Sr.
  2. At the beginning of the piece, Thornton recalls growing up in institutions where every decision was made for him. He talks about his sister died in an institution before talking about joining the community outside of it and what the adjustment was like. He met his wife, they had a child, and grandchildren. He goes on to talk about how he advocates for disability rights and is very successful in life because he was given the opportunity to grow.
  3. “Segregating people is always bad; people never grow in those places and are safer and happier in the community.” (89). “When you live in the community you make friends that support you and help in your advocacy.” (87). “I am here representing the ninety-two thousand people who are still living in institutions and large public and private facilities for people with intellectual disabilities” (85).
  4. This reading had a lot of solid takeaways. The main one being that institutions are ineffective and simply a way to segregate and separate people from the community. This was meant to be seen as a solution but it did more damage than good and it’s just a way to push ideas of who should and shouldn’t be involved with the community. I think another big takeaway I gathered was the importance of community when it comes to disability. The support, love, and opportunities are endless and help people live full lives full of the greatest things in this world.

Self Love and Fleeting Joy

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  1. Nurturing Black Disabled Joy by Keah Brown
  2. 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.
  3. “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).
  4. 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.

We Can’t Go Back -RAB response

Djellibeybi2 Comments

An essay derived from a statement presented before the United States Senate Committee on Health, education, Labor and Pensions on June 21 2012 from Ricardo T. Thornton Sr. Ricardo discusses his life experience in an institution, Forest Haven in Washington D.C.. He and many of his family and loved ones had been placed in institutions like Forest Haven, and he was very familiar with the abuses that take place when rights are not respected between client and caretaker. When he was able to leave Forest Haven, he lived in group homes where he met his future wife, Donna, and began to develop a good life for himself because he lived in a community which encouraged him to succeed. When given the opportunity, Thornton believes the disabled can succeed in society and that it is not good to separate the disabled from the community and any opportunity to succeed.

Quote:

“In the institution, I didn’t get to think for myself. The Staff thought for me and made all of my decisions. For a long time, no one expected anything of me.” Pg. 85

“I hear people say that some people are too disabled to live in the community, but I’ve seen people just like the people just like the people still in institutions who do so much better in the community – because no one expects you to do anything in the institution but survive.” Pg. 87

“Segregating people is always bad; people never grow in those places and are safer and happier in community.” Pg. 89

I thought that this essay was very well written. I would have loved to listen to this guy read his speech. Maybe it’s available online. The guy seems like an amazing person, and I wouldn’t mind meeting him, to be honest.

Peter Singer is Spooky as Hell

unsureunderwaterobot1 Comment
  1. The title and author of the source 

Unspeakable Conversations // Harriet McBryde Johnson 

  1. An objective summary of the reading 

In this reading, the author tells a story of their experience with Peter Singer. Singer is an educator at Princeton University who believes in and fights for assisted suicide and infanticide of disabled peoples. The author is a disabled lawyer, fighting against Singer’s notions, in order to defend their own life.  

In the chapter, the author walks their readers through a series of events—the major ones being: when the author went to one of Singers talks in town, their email exchanges, and the author’s visit to Princeton where they spoke to a class with Singer, toured the campus and had lunch. Each of these events paint a picture of who Singer is, who the author is, and the paradoxical exchange between them. The author brings their own perspective and voice to the writing by inserting further explanation regarding their positionality and beliefs, Singer’s beliefs and actions, and how the two clash/collide. Woven throughout the anecdotal evidence is commentary regarding how the author felt, the thoughts that came up for them, and reflections looking back.  

  1. 3 or more quotations (with page numbers) 

Regarding their differences: 
“To Singer, it’s pretty simple: disability makes a person “worse off”. Are we “worse off”? I don’t think so. Not in any meaningful sense” (McBryde Johnson pg. 10-11). 
“I define Singer’s kind of disability prejudice as an ultimate evil, and him a monster, then I must so define all who believe disabled lives are inherently worse off or that a without a certain kind of consciousness lacks value. That definition would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories, and share the grunt work of local politics… I can’t live with a definition of ultimate evil that encompasses all of them” (McBryde Johnson pg. 26). 

Regarding non-normalizing:  
“…I have no more reason to kill myself than most people…” (McBryde Johnson pg. 7) 
“…to try to prevent most suicides while facilitating the suicides of the ill and disabled people is disability discrimination” (McBryde Johnson pg. 20) 

  1. A personal reflection naming 2 or 3 take-aways from the reading 

This was such an informative read. I think the way the author spoke about the opposition/togetherness between themselves and Singer was so digestible. They offered complex and deep ways of thinking through a story + analysis lens. I think the story itself was pretty bizarre. It’s one I’ve been sharing with my friends. We’ve been discussing it a bit: how can a person have such specific and seemingly impractical beliefs? How have they not been put in their place? Then again, folks support Trump.  

In reflecting, I am brought back to the idea that Black folks are not responsible for educating nonBlack folks about racism; womxn are not responsible for educating men about sexism. I don’t feel like the author is responsible for putting themselves through that sort of discrimination. But also, they chose that. I don’t know. Lots to think about.  

Johnson, Harriet McBryde, “Unspeakable Conversations”

Tuesday1 Comment

Disability Visibility: First-Person Stories from The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020. (pp. 3-27)

Summary:

The author, Harriet McBryde Johnson, starts her narrative by dropping the reader right into the central conflict of her story. She is at Princeton giving a presentation and participating in an ethical debate against Peter Singer, a well-known Animal rights Supporter and Utilitarian philosopher. Johnson is there to counter Singer’s arguments for selective infanticide. This is not the first time these two intellectuals have gone head-to-head, the first time they engaged in open discourse being in 2001 over disability-based killings and assisted suicide. Despite Singers subscription to veganism and animal rights narratives, Singer strongly supports the killing of disabled people, a group Johnson belongs to. Johnson’s story while featuring some of the argument exchanged between her and Singer is not focused upon the content of their debates. Instead, she focuses upon the how the discussion was conducted. Most of the chapter is spent discussing how Johnson felt overwhelmed by the unfamiliar environment she had entered during each debate. Her being out of her element garnered her criticism from fellow disability rights activists and lawyers. Johnson describes how she felt guilty and foolish for even engaging with Singer. She describes how she entered her interactions expecting Singer to be discourteous and view her as less than human, only to be shocked when he did not. At one point, Johnson describes Singer as the “Evil One”.  Her interactions challenge her ability to hold this view of Singer. The most notable feature of the chapter is Johnson and Singer’s interactions. They both act with grace and treat each other like other humans, there is a respect between them. This surprised Johnson and leads into the larger realization of the chapter, though she cannot agree with Singer’s world view she can not disregard Singer’s humanity. Johnson ends the chapter by extending this sentiment to other’s who see her existence as miserable and declares her intent to keep fighting against ableist rhetoric.

Quotes:

“I shouldn’t shake hands with the Evil One.” Pp.8

“… I have been sucked into a civil discussion of whether I ought to exist, I can’t help but be dazzled by his verbal facility.” Pp.9 (This is a section where the whole paragraph is solid gold. Harriet Johnson’s emotional turmoil over the debate is highlighted very well.)

“I realize I must put one more issue on the table: etiquette.” Pp.13

“I feel like an animal in the zoo. I hadn’t reckoned on the architecture, those tiers of steps that separate me from a human wall of apparent physical and mental perfection, that keep me confined down here in my pit.” Pp.16

“I can’t live with a definition of ultimate evil that encompasses all of them. I can’t refuse the monster-majority basic respect and human sympathy.”  Pp.26

Reflection:

Before I go into my thoughts on the essay I would look to establish that I find most of what Singer says to be offensive. He reminds me of a typical theorist, stuck in their version of the world struggling to fully put themselves into reality. But I can not in good faith say I find all of Johnson’s points convincing. To me both sides have flaws, but Johnson’s side is more appealing and fosters more understanding. All the issues I have with Johnson’s arguments are minute compared to the issues I find with Singer’s. I will end by saying I understand how he reaches the conclusions he does, but that not make them right.

I do not think the ethical debates discussed in this entry of Disability Visibility should be focused upon too heavily. While they are very important conversations, I do not think they are major take away from the narrative put forth by Johnson. For a while now the internet has been the home of the war between the “leftists” and the “anti-SJWs”. I do not know if these are what either group currently identifies as, but they engage in a similar debate culture to the one described by Johnson. I am not talking about the idea of debating an ethical/moral issue in a public forum. I am talking about the idea that to engage with the other side is to be a fool and secede more ground than one should. I think Johnson does a wonderful job in illustrating how this mindset looks and feels. This view tends to inhibit progress quite a bit and requires a considerable amount of personal reflection to overcome. I think the internal and external conflict Johnson describes is a good place to jump off into an examination of a grey world view. Recently most of the discussions I have seen strongly suggest one side is right and the other has little to offer, in other words a black and white world view. Johnson is openly acknowledging that perspectives flaws. This is also the first time the word “evil” has been used explicitly. I will make the disclaimer that I do not believe any author we have read has thought of society as evil but combined they do paint a narrative where society is ableist and is sort of evil for being ableist.  It is hard to express how this affects the audience and the exigence’s palatability. If I had to explain it, I would say defining one side as evil and the other as good injects a rot into the conversation so no one can benefit from the interaction. To be clear, this explanation toes the line of respectability politics and is lacking in nuance. It is important to realize rhetoric is a two-way street, often the rhetor is the unwilling audience to the audience and audience an unknowing rhetor. The audience will either affirm or deny the rhetor’s message. In Johnson and Singer’s discourse, they have a literal audience in the students watching, but they are each other’s main audience. Their discourse extends past the staged debate to more personal interactions. We as a third party will probably never know the actual results of these discussions, but we can assume the effect on Johnson was a blurring between good and evil. These interactions also reaffirm her path to her, which I appreciate. I am glad that she was able to take this experience, use it as motive and grow from it. I think this is what the outcome of all discourse should ideally be.

Disability Visibility: Action of Humanness

unsureunderwaterobot2 Comments

“Contribution, innovation, relation, condition, completion, devotion, identification, regret, burden, belief, wrong, right, rebuild, beautiful, embodied”, all words used to describe Disability Visibility. Disability Visibility is a compilation of “first-person stories from the twenty-first century” written about disabled folks, by disabled folks. This mosaic of anecdotes was pieced together by Alice Wong. Each story differs greatly. Authors explain their individual experiences of being disabled in a world built without them in mind. Despite each story being personal to the author, the overarching theme of the book remains consistent. From narratives about navigating medication as a woman with bipolar disorder, to stories about the shame casted on a young, Black girl growing up in a religious household, Disability Visibility amplifies the voices of folks silenced in our world.  

Disability Visibility is written for a wide audience of folks both disabled and not. It acts as a learning outlet for nondisabled people to hear stories told by people living with disabilities first-hand. It gives disabled people an opportunity to tell their stories and exist in communion with one another. A concept explained in the story The Beauty of Spaces Created for and by Disabled People is crip space; “Crip space is 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 pg. 273). Disability Visibility is a crip space, of sorts. It is a space where disabled folks can express themselves without the ableist pressures of our society.  

Each story grapples with the idea of disability, for example, from Incontinence is a Public Health Issue—and we Need to Talk About It, “I didn’t feel disabled, as it were” (Ramsawakh pg. 175). Or from When You are Waiting to be Healed, “I was learning to navigate the world as a young Black woman, and I did not feel I had the right to claim a disability” (Eric-Udorie pg. 56). Both stories have unique plots, characters, settings, and emotions, but themes remain the same throughout. The entire book carries parallel agencies. The most prevalent is to share the non-fetishized, pity-free stories of disabled people.  

Alice Wong compiled these essays and short stories as individual accounts that created a sense of communion. Jamison Hill’s chapter, Love Means Never Having to Say… Anything, discusses their partnership with a woman named Shannon. Both Shannon and Jamison are disabled by the same illness (although it has manifested differently in their bodies). Jamison writes about how transcendent disabled love is and how having a disabled lover has been incredible. They write, “…but Shannon and I take care of each other in ways I never thought possible” (Hill pg. 265). This story portrays the larger concept of Disability Visibility. The disabled community can take care, despite the world not reciprocating. The story, and book as a whole shows the disabled community in action. The story avoids inspiration porn and pity; but rather, it resembles compassion, togetherness, and humanness.  

The Power of Personal Narrative

turtle1 Comment

Disability Visibility is a collection of personal essays edited by Alice Wong. The goal of this collection is to offer insight and perspective into what it is like to have a disability. The stories share different people’s experience with disability and how society’s misconceptions and mindset towards those who are disabled has come to effected them in positive and negative ways. Each story is deep, personal, and offers a new lens into a life experience that many people are not familiar with or haven’t thought about. This collection causes us to self reflect on the way that we see and treat others in our society and community versus how they wish to be treated and seen as. It breaks down stereotypes and offers first hand accounts of what it is to be marginalized, discriminated against, and the obstacles that are faced (the obstacles we may not have originally thought of facing) when one has a disability. Not only this, but the book also focuses on people marginalized by their disability finding the spaces where they feel belonging, “Members of many marginalized groups have this shared experiential touchstone, this sense of unexpected and vivid belonging” (272).

The audience is meant to be people who are interested in learning more and breaking down their own misconceptions of disability and disability studies. Those who read it will come out with a new perspective and outlook on the disability community. This book is meant to be read by those interested in the experience of being a part of the disability community, to learn more about what that entails and what the benefits are from finding a place where one belongs. It’s about watching other people’s perspective towards their disability, religion, society, politics, and more change, “When I walk into that church service, I am not the believer that I used to be.” (58).

This communication is done through personal essay, the stories and memories of those with disability that deem these moments as valuable and worth relaying. The social expectation of this form of communication is that each essay offers a vulnerable, personal story, that contains some sort of lesson the writer learned and feels needs to be shared and learned by others. Often, these are stories from childhood that have stuck with and influenced us our entire lives, “I am ugly. There is a mathematical equation. to prove it. Or so I was told by they that sat behind me in my seventh-grade art class.” (39). These narratives are usually told in a story telling form and don’t follow an academic structure. They can be poems, essays, even verse.

In the end, I loved this book. It changed my perspective and made me look at disability and the disability community in another light. I was able to connect with the writers both personally and emotionally. I feel like I’ve been opened up to a new community and I would definitely rate this a 5 star read.

Middle School Traumas

turtle2 Comments

There’s a Mathematical Equation That Proves I’m Ugly Or So I Learned in My Seventh-Grade Art Class by Ariel Henley

This essay was about a young girl with Crouzon Syndrome and how she found beauty in herself, even when everyone and everything is telling her otherwise. Her story is focused on her experience in a middle school art class where they learn about the golden ratio that mathematically defines feminine beauty within art. Throughout the class, this girl tries to find a way to be comfortable in her own skin and feel beautiful.

“Beauty is subjective” (46)

“”Fix me””(42)

“I have never understood mathematical equations or ratios, so the only thing I learned from her lesson was that these were the beauty standards a woman must meet if she wanted to be deemed worthy” (41)

I think the main take away for me from this essay is that beauty cannot be defined. It’s subjective to the eye of the beholder and there is beauty in absolutely everything around us. I also really liked that this was about this girl finding beauty and seeing herself as beautiful. I think often in these stories we hear about people dealing with physical deformation problems that end up finding beauty in their personality and they’re inside rather than their outside. I understand how important it is and that what’s on the inside matters but it’s nice to read a story where someone doesn’t give up on their personal appearance and finds beauty in their physical outsides as well.