Disability Visibility: first person stories from the twenty-first century, pages 47 – 52, 59 – 74, 205 – 226, 236 – 242
26 thoughts on “Reading for Monday August 28”
This reading provides us with a taste of what minority groups experience regularly, and what is especially striking about this reading is how each section’s narrator depicts their experience––in such explicit detail that the reader feels like they are experiencing it with them in a sense. Often the reader experiences these stories with a feeling of discomfort: when Jen Deerinwater was ridiculed, belittled, and denied medical aid simply because of their Tsalagi origin, or, due to the lack of an ASL interpreter and his hands being bound, Jeremy Woody––who is deaf––was declared guilty in disciplinary court, or when Britney Wilson with cerebral palsy was helpless and preparing for the worst when her transit driver urinated in front of her. Reading these experiences leaves the reader horrified and enraged for these people who were wronged by the American system. Disability and Visibility works to bring attention to the treatment of those in America whose needs are not met as a result of possessing a trait that is an integral part of their identity, and with this novel simply existing and people reading the stories that it has to tell helps achieve that.
I have a few questions that seem to build off of each other, so I will put them together: What part(s) of the reading made you uncomfortable? When you were done with it/them, how did it make you feel? Was anything striking brought to your attention that you had not been aware of before this reading?
The readings illustrate how disabled and minority people are treated and what they feel in daily life. I have never come across this type of reading before, and it is truly shocking.
The government should provide more support and resources for disabled and minority people by investing in and updating society. However, it is important to note that the government does not possess an unlimited amount of money and its priorities are investments for people without disabilities/majorities. Therefore, it is crucial to find ways that are either inexpensive or beneficial for both groups of people.
One of the inexpensive options to improve the environment around disabled and minority people is to educate people without disabilities/majorities by spreading first-person stories. It makes people without disabilities/majorities understand the hardships of people with disabilities/minorities and possibly changes their behavior.
Investments in technology are a great way to satisfy the needs of both the majority of people and the people with disabilities/minorities. McLeod noted how he utilizes iPhones/iPads. It illustrates that technology for people without disabilities/majorities can be a great help for disabled and minority people. If the government and private sectors invest in such technologies, both groups of people are able to get benefits.
It is easy to say that the government needs to support disabled and minority people, however, we need to understand how the government decides fiscal plans and utilizes its decision-making system.
Though this is a grim outlook, I hope investment and progress in technology will transform society so no one gets behind.
This is not the first time I’d read this text, or pieces of it, but it hits hard every time. Written as an anthology, Disability Visibility seeks to highlight the diverse experiences of disabled individuals of the 21st century, and how institutional ableism intersects with other identities and systems of oppression which include race and indigineity, the justice system, and normative appearances of able-bodiedeness just to name a few.
One of the pieces that struck with me the most deeply was Common Cyborg by Jillian Weise. As both a disabled person and an aspiring assistive technologies researcher, I’m used to viewing assistive technologies as a generally positive thing. In the cases in which I’ve used them, I’ve been able to better interact with my built environment and my aim is that the tools I may one day build can do the same for others. I seek for these tools to be normalized, a sentiment mirrored by Gaining Power Through Communication Access (the podcast transcript), where Lateef McLeod spoke on the iPad as an AAC device. However, Common Cyborg challenged this notion as AT as a net positive, not because it should not be used or needed by disabled folk, but by the ways assumption of use is complicit in the perpetuation of systemic ableism. Disabled folk are therefore expected to use these technologies in pursuit of mimicing ablebodied and mindedness as closely as possible, even to the point of usurping cultures that exist within the disabled community, such as the pressure for deaf individuals to use hearing aids, or “better yet” the unseen cochlear implant, and abandon their often native language of ASL which has a great cultural significance as well as a communication one, and be grateful for this enforced “cure”. This piece was interesting juxtaposed against those which were explicit descriptions of the horrors of ableist injustice: Jeremy Woody was imprisoned bc there was no ASL interpreter for his defense in court, and Jen Deerinwater was denied access to culturally competent medicine that honors both disability and indigineity—or even one of the two—and paints a damning picture of the role of technosolutionism as it inhabits our ableist world. We want to see technologies as part of a solution, but enforcing their use and denying disabled folk agency in when and where to allow assistive technologies to be part of their lives, it is instead a profound force for deepening the problem.
It is always difficult to understand the way in which others experience the world, especially when there are differences in identity that drastically reshape reality for another person. Britney Wilson’s excerpt, “On NYC’s Paratransit, Fighting for Safety, Respect, and Human Dignity,” was much like the other stories in this reading in the way that it presented a different reality than the one I experience daily, but it felt exceedingly real due to the mundane nature of the events. Wilson’s entire piece centered on the increased demand for public transportation by disabled individuals such as herself. Transportation, something I typically take for granted, is an inescapable need for nearly everyone, and that need is only heightened with the inability to walk, which is why Wilson’s descriptions of the added nuisances of poorly designed routes and exceptionally long wait times are so effective. Experiencing these alone on a semi-regular basis would be enough to piss off anyone, but the way in which Wilson is completely at the mercy of the system is striking. Moreover, her description of the driver urinating in front of her comes across as completely unnerving and almost minimizes the systemic issues, since there is an imminent threat of physical and psychological harm. As someone who has never felt the powerlessness that her writing exudes, it is difficult to rationalize an alternative reality such as this, but valuable for the sake of forcing that consideration.
The section of Disability Visibility that struck me as the most interesting was “Common Cyborg,” by Jillian Weise. Not only does the piece discuss the categories used to name people with different abilities, but it discusses how these names can isolate these individuals in society, allowing society and engineers to justify control over how those with different abilities interact with the world. For example, Weise writes, “The cyborg is the engineer’s dream. The engineer steers and manipulates the human to greater performance” (Weise 65). Engineers project their own technical desires onto those with physical disabilities, like granting those with prosthetics a greater ability to walk or run than they had before. Instead of considering the wants of the user, engineers assume that users of prosthetics want greater performance. Or, engineers may require that the end user stay within a certain weight range for their prosthetic to work (Weise 65). As Weise points out, this appears to be a part of a trend where society prefers to “cure” the differently abled, not accommodate them into society (Weise 65).
Overall, Weise’s analysis is important in that it highlights the importance of engineers, including software and hardware engineers, to consider the preferences of users. At the same time, it reveals how some hardware or software may have an increased responsibility to consider user feedback, particularly if it may influence the quality of life for an individual. Not only can it be difficult to measure improvements in quality of life, however, improvements in quality of life may not necessarily be desired by the end user. The use of prosthetics or cochlear implants can make it difficult for the physically disabled or the deaf to connect with members of their community, to connect with their identity.
Monday’s reading, Disability Visibility, brought together a collection of personal accounts of the everyday difficulties of being a minority and/or a disabled person. Several stories grabbed my attention but I would like to highlight the stories of Jen Deerinwater and Britney Wilson.
Jen Deerinwater’s essay highlights some facts about being an Indigenous person in America. Each fact brought into the essay underlined injustice and crimes the majority-white American Government has committed against the Indigenous population for hundreds of years. For a population to “have the highest rate of suicide, diabetes, autoimmune diseases, heart disease, murder, and alcohol and drug abuse” (p. 50) points to an extreme amount of negligence by the Government. Healthcare available to Indigenous People specifically exemplifies this negligence as Deerinwater mentions how there is virtually no reproductive healthcare and Indigenous peoples are only allocated $1,297 in Healthcare funding per person (p. 49). In addition to facts, Deerinwater provides her personal experiences. Through her own experiences, it became evident to me some of the privileges I have, such as access to good healthcare, that I sometimes turn blind to.
I have been on New York City public transportation hundreds and hundreds of times year after year. However, I have rarely paid attention to the Access-A-Ride. Wilson reveals the struggles of being a disabled person who relies on Access-A-Ride; she makes it clear that it is a mismanaged system with a serious concern at times for the safety of its passengers. Wilson’s story of getting peed in front of by the driver is a disgusting image to imagine especially as she must rely on the same person for her disembarkment and thus overall safety. This scene in particular as well as the general disarray of the Access-A-Ride shows disabled people treated as second-class citizens. The outrage of Britney Wilson is both granted and saddening. The daily disappointment and expectation of travel to fail you when you have no other choice should not be the norm.
All the texts in the reading for class on Monday were uncomfortable for me. However, each text was important. I think we must read texts like this, for societal and systemic inequities are never removed from anything. Learning about these extensive difficulties that minorities and disabled groups experience can help us see where, why, and how these same issues extend into our world of computer science.
Some questions I had:
Were the pieces collected at large or were they submitted directly for publication?
The iPad was mentioned as an important tool but is this still a truly cost-effective option?
Was I truly ignorant of some of these issues like the Access-A-Ride or did I look past them?
I thought this collection was fascinating and hard-hitting. I thought the huge variety in writing styles (unintentionally or not) mimicked the vast differences in experiences of people who might all identify under the same umbrella. As for the stories themselves – while not intending to compare trauma – for me, I was most stuck with the visual of the conclusion of Dr. Wilson’s piece as well as the sense of isolation and helplessness of Jeremy Woody’s.
Starting with Dr. Wilson’s piece, and even without the urination (a situation which I cannot imagine being in and feel like anything I say wouldn’t do that encounter justice), the delays and inconvenience of the system would not be tolerated if it catered to a more general population (imagine if the MTA went past stops and went back – there would be an uproar). Even beyond that, it’s not even the same as MTA since that isn’t necessary for most of its riders, while Access-A-Ride is a service to allow mobility and autonomy. For whatever reason, thinking about its under-funding reminded me of a Jordan Klepper clip where he’s interviewing a Trump supporter about gay marriage and she says
“my problem with gay marriage is that the gays want more than regular couples!” to which he responds
“by more do you mean equal?”
“Yeah, equal”
“And that’s just too much?”
“Yes!”
To be completely honest, I don’t have a good way of writing about the horror that Woody’s story shared. I’ve rewritten this section several times and it all comes across as detached or clinical, which doesn’t feel appropriate. Maybe that’s one of the things I can try to gain from this class, but it feels really hard to deal with this type of content in an appropriate and informative way without minimizing or homogenizing the experiences of very internally diverse groups. I hope to get better at this.
I really appreciate this comment, Brian. We (humans, Americans) like to put people into buckets or categories. What are the consequences of that? What do we gain? What do we lose?
-Professor Eikmeier
These excerpts from Disability Visibility, through detailing the experiences of various disabled individuals in different aspects of their lives, shed light on the ableist norms of our society and display how ableism is experienced differently by people, informed by their unique intersectional identities.
In the case of Deerinwater, for example, we see that medical ableism has the tendency to function through a logic of erasure for Native individuals, co-opting the particular strategy that settler colonialism utilises against Natives and their culture. Additionally, through this and Deerinwater being refused pain medication, we are able to see the operation of what Indigenous studies professor at Colorado College Dwanna Mckay calls “legitimized racism” in the ableism they experience. Both Deerinwater and Harriet Tubman Collective construct racism and ableism as inextricably entangled in informing the experiences of individuals with native and disabled, or black and disabled identities.
Harriet Tubman Collective write that disabled individuals are “disabled by social and institutional barriers”. Unfortunately, this is an understanding that larger society does not seem to have, as can be seen in the rhetoric and actions surrounding services provided for accessibility. One such example is that of Access-A-Ride detailed by Wilson, as if the inconvenience and indignity of using public transport should be expected and borne by disabled individuals even though non-disabled people do not have to experience the same when using the subway. It seems to signal that institutions believe that services such as Access-A-Ride are a not something that is remedying the lack of accessibility of the New York Subway, but a privilege given to disabled individuals above and beyond what society decides they deserve. Then, it is clear to see that ableist norms view disabled individuals as subhuman.
In conjunction, I also think that each of the chapters illustrate that ableism takes on so many subtly different forms and is so normative in society that, unless we experience it, we are not truly able to comprehend it and, therefore, are likely to perpetuate our internalized beliefs in the technological solutions we design. This then points to the necessity of having disabled individuals in tech, for example, to better ensure the production of end products that are truly accessible and equitable by giving them the agency instead of paternalistically prescribing solutions.
I really appreciated the format of this reading/book, as I felt I was exposed to the problem of discrimination, inaccessibility, and erasure in the many (and sometimes unexpected) ways it could come about.
I was particularly struck by the attitude in the section titled “The Isolation of Being Deaf in Prison.” It was a completely unimaginable circumstance, to be surrounded by people that you could not communicate with, and actively being denied the resources that would allow you to enrich and sustain yourself while imprisoned. I thought this spoke volumes not only about the attitude that many institutions seem to have about providing supporting services for disabled people, but about our government’s consideration of incarcerated people as well. Our prison system is so focused around punishing and denigrating criminals that paying for an interpreter, someone who would help a deaf person integrate into the community they are in, was simply unimaginable and denied almost every step of the way.
The “Common Cyborg” introduced an aspect of identity that I often fail to consider. Many people lament about their own dependence on technology, but few of these people would have their lives substantially changed if they were without it. For most, technology is the difference between being able to get directions or take a picture, but for many others it is the thing that allows them to communicate, move, or perform another act that they would otherwise have difficulty doing. I also appreciated the “tryborg” title for those who have incorporated technological elements into their body for pleasure, a confusing pursuit when many who so need similar technology go without it.
The section on the NYC Paratransit system also made me think about the lack of attention and resources we as a society allocate to disabled people. The problem is a very complex one, to be sure. It requires a very efficient system to make decisions quickly and intelligently, all while accounting for myriad other factors. Still, it was not easy to build an international highway system, dig the Panama Canal, or put a man on the Moon. All of these problems were solved because we cared to solve them, and disabled people are forced to rely on a confusing, derogatory, and uncaring system to get around the city.
Disability Visibility was a lot more eye-opening than I imagined. I haven’t thought much about ableism and how those with a disability or any sort of problem can be deeply affected in society. While reading through the experiences of other people, I was shocked, disappointed, and concerned with how we are currently dealing with these heavy issues.
I was impacted by the experience of Wilson and NYC paratransit. The difficulty with even just trying to get the places with the lack of interest and concern from the drivers makes me in disbelief. It was more shocking when the driver was peeing in front of Wilson and she couldn’t do anything about it. Especially when she tells this story to her grandmother and uncle, and her grandmother says “It would be your word against his. Who’s going to believe you?” (pg. 219). We see that with the unequal treatment due to racism and ableism, it is a disgusting moment to see how Wilson is not able to do much after the experience that she went through. Woody, being deaf in prison, had a similar experience to Wilson and continues to show how it seems to be a pretty common event that occurs to people with disabilities.
In McLeod’s writing, I began to see how technology can assist those in need and how expensive it is compared to phones, iPads, and computers. Seeing McLeod’s conversation with Alice, I began to think about how we could implement such medical-grade technology into devices that are cheaper and provide easier access to those in need, as it is not accessible to everyone due to the cost of the equipment.
Lastly, from the Harriet Tubman Collective, I was not aware of the statistics on how disabled people are more likely to be murdered. It was even more concerning how the platform proposes to help Black people but omits those with disabilities even with the given statistics. These passages have really opened up a lot more issues that I would’ve realized and made me heated at some experiences that people had to go through due to the lack of concern and interest for those in need. I am also wondering how can we help to resolve these issues through technology if possible.
It isn’t necessarily a question about the reading itself but more of a clarification. I was curious about what exactly was going on in the reading on page 68 in Common Cyborg.
I believe your final question is related to the conversation between two individuals on page 68, on whether or not they identify as a “cyborg” when their various assistive technologies are not in use.
-Professor Eikmeier
It is extremely angering and saddening to understand the positions that we put disabled members of our society through. Stemming from what I, in my limited knowledge, believe comes from the U.S.’s deep-rooted ideas of white supremacy, eugenics, and belief in individual monetary capitalistic achievement, we have created an environment where disabled individuals are ignored, institutionalized, and treated as others. Then, of course, as was the case in more than one of the speaker’s cases, if your identity happens to be that of someone who is disabled and a woman, Black, or Native you find yourself in a position where your identities overlap and assistance, understanding, resources, and visibility can become even more difficult to obtain.
The U.S.’s historical view of disabled people can be simply summed up by understanding the Ugly Laws written throughout this country. In Lateef’s poem, he describes the Ugly Laws as laws set up to punish those with visible disabilities or disfigurement if they appear in the public eye. While these laws may not be in practice today, we still have a legal system where the vast majority of young children ending up in juvenile detention centers have at least one disability according to the Harriet Tubman Collective section.
I find that our current structuring of society gives very little help to those who are disabled, as is evident throughout these stories, and I am extremely worried that our political climate is shifting in the U.S. in a way that will increase the damage to those suffering with a disability. As states pass book bans, abortion bans, and bans on affirmative action, it feels like the conversation is shifting away from creating improvements to how we treat people and becoming more focused on retaining what improvements activist have achieved in the past. Conversations about universal healthcare which would alleviate some of the issues Jen Dearinwater faced seem to be further and further away.
I wasn’t familiar with many of these authors before reading these pieces but now I am very interested in their individual works. Each reading highlighted very different stories from very different people, but within all of them was evidence of the disregard, and often disdain, for people with disabilities that is ingrained in American culture. The authors in their own ways also illustrated how our treatment of disabled people is directly tied to our history of oppression towards racial minorities.
Each story describes the author’s respective difficulties of dealing with a world that is constantly upset simply because of their presence. Jen Deerinwater faced abuse from her health care providers, who denied her pain medication and spewed racial slurs at her. Britney Wilson described her horrible experiences with Paratransit in New York, including a driver urinating in front of her. The Harriet Tubman Collective outlined how disabled people are left out of the conversation about race in America, even though they are crucial to understanding anti-Black racism. This all points to a recurring theme of ambivalence towards disabled people from governments, businesses, and other organizations. Accessibility is never at the front of our collective consciousness, and the general reaction towards any attempt to talk about it is that disabled people should be happy to have anything at all.
When accessibility is discussed though, it is often because of some new development in assistive technology. One of the most interesting pieces to me was Jillian Weise’s “Cyborg Concerns” which paints a bleak picture for our relationship with technology, the internet, and futurism. The promise of modern technology is often not for those that would benefit from it the most, as assistive technology is astronomically expensive and engineers and “tryborgs” as Weise calls them are more concerned with the future for themselves than anybody else. As impressive as robotic limbs are, most that would benefit from them will never be able to.
The various excerpts from “Disability Visibility” explore different stories from individuals who are disabled and/or belong to minority groups in the US. Although each story highlights the personal hardships of the individuals, I believe that beyond merely reporting the injustices and flaws in the different accessibility systems, the goal of every excerpt is to create awareness about the importance of treating everyone with dignity and respect, allowing them to feel safe and acknowledged.
In the excerpt “On NYC’s Paratransit,” Britany Wilson states, “The concept of entitlement is familiar jargon in discussions of race and class, and it is just as widespread in the realm of disability. It’s the idea that we are acting as if someone owes us something rather than merely asking to be treated with the respect and human dignity we deserve” (Wilson 210). I think that this quote encapsulates the main problem faced by people with disabilities. Instead of receiving the necessary help, they must be grateful that someone or something is doing the bare minimum for them.
Another excerpt that addresses the same idea is “Gaining Power through Communication Access.” Something that I found particularly interesting about the writing style of this excerpt is that it’s a transcript of a podcast dialogue. This allows us to dive directly into an ongoing discussion about disabilities. There are two points I would like to further discuss regarding this excerpt. First of all, the debate about the distinctions between technology and assistive technology is extremely interesting. I had never considered how certain assistive technologies are seen as standard features by the majority of people. I find this problematic mainly because if most people view such technology as essential features, it undermines its entire purpose. The second intriguing aspect is the approach of seeking visualization through art and communication. I believe that by the end of the poem when Lateef shares his poem, he manages to encapsulate all his feelings and thoughts regarding his disabilities while also conveying them powerfully.
Lastly, I’d like to comment on the fact that even though excerpts like “On NYC’s Paratransit” demonstrate how flawed the Paratransit system is, I believe that it still deserves some credit. When I was reading this excerpt, I was truly surprised that a system like NYC Paratransit exists. I come from a third-world country where we do not have anything similar to this, nor any viable alternatives for disabled or elderly people. So even though there is still a lot of room for improvement in this system, I think it’s important to recognize that the United States is much more advanced in terms of accessibility resources compared to most countries.
The neglect and erasure of people with disabilities figures prominently in the readings. The authors describe their personal experience of living with disabilities under systems that can’t or refuse to accommodate them.
Several of the authors try to address this abuse through official or bureaucratic complaint mechanisms. These attempts generally fail, sometimes leading to catastrophic results. When Jeremy Woody is unable to receive an ASL interpreter at a hospital while in prison, he can’t receive vital care, and later finds out that he has cancer. He files several official requests and complaints for the lack of translation, but is denied repeatedly. Similarly, Brittany Wilson describes how after her Access-A-Ride driver pees in front of her, she has no recourse to file an official complaint since she had not thought to record him.
These authors now attempt to make progress through different means: by public appeal rather than formal complaints. This approach is indirect but likely more helpful to their cause. The systems that these authors fight for their rights under — prisons for Woody and public transportation for Wilson — are not only designed without the disabled in mind, their reporting mechanisms are also designed to resist access and change. As we work to improve access to disabled access to these systems, we must also work to improve their capacity to change and adapt to feedback. Otherwise, the bureaucracy will continue to stifle access.
I personally find the reading very eye-opening and captivating, yet very disturbing at the same time. Growing up as an abled person myself, I never really put too much thought into what it would feel like to live life as a disabled. Therefore, it feels almost enlightening to read about the experiences of people with different forms of disabilities, all from a first-person point of view but in very different settings and with different narrative styles.
The story that took me the most time to read and process was “The Isolation of Being Deaf in Prison”, despite it being on the lower end in terms of length among all the stories. Coming from Vietnam, I was never exposed to accessibility as a topic, and having the privilege to attend a somewhat accessible college gave me a false impression of how this is dealt with in the majority of institutions in reality. I never imagined myself in a situation where I was deprived of all resources and opportunities to enrich myself academically, and denied all access to basic human rights simply because of an inability to communicate any of my thoughts and emotions and the lack of support for that in my surrounding environment. It’s astounding to realize how few people showed empathy for disabled people and how few of them stood up to help or request accommodation on their behalf. It’s also disturbing that most of those times, at least in the author’s specific experience in Georgia’s prison, the institution refused to provide what was requested and needed in compliance with outdated laws and regulations that were not inclusive and accommodating of different circumstances. Even when those rules were not involved, the institution still deliberately and unreasonably made their life more difficult, like when they decided not to pair up deaf people using the same sign language, or choose to pair up people who have no mutual form of communication.
Some of the questions that came to mind after I finished the readings were:
– Have you guys ever heard of experiences like these before, or are they also new to you?
– I personally think spreading personal accounts of experiences like these is a good way to raise awareness of institutional and societal ableism as well as the incompetence in making society more accessible. Were these stories collected? Is there any way to further spread them or encourage people with more varied experiences to speak up?
Disability and Visibility” explores the experiences of disabled individuals within a technologically advanced society, highlighting the challenges they face in terms of identity, representation, and access to healthcare. In the assigned chapter, individuals or groups use a narrative way to describe how disabled people often have to navigate a world that either fetishizes or ignores their conditions, leading to erasure and isolation. One specific example I felt touched on is the story of Jeremy Woody, a deaf individual in prison, who faced immense barriers due to the lack of accessibility. The prison system failed to provide American Sign Language interpreters, hindering his ability to communicate with staff and fellow inmates. This example sheds light on the terrible consequences of neglecting accessibility for disabled individuals, especially within the criminal justice system. This story also expands my mindset of the definition of rights no matter what you did and where you are, citizens deserve their rights.
Another story is from Fen Deerinwater, an Indigenous woman, who vividly illustrates the erasure and dehumanization that disabled individuals often experience within healthcare settings. Deerinwater’s encounters with healthcare professionals repeatedly force her to define herself through racial categories that fail to acknowledge her specific identity as a citizen of the Cherokee Nation of Oklahoma. Her struggles to assert her Indigeneity against the racial classifications created by the settlers highlight the intersection of disability and ethnicity. The questions posed to her, such as “Are you Indian?” or “Tell me about your people,” expose the discomforting gaze of non-Native individuals, treating her as a way to fulfill curiosity rather than affording her the dignity of a patient seeking medical care. In this way, it underscores the importance of recognizing the multi-dimensional identities of disabled individuals and the urgent need to challenge systemic prejudices within healthcare systems.
Personally, I felt discomfort as well as sympathy while reading the text. However, I still strive to call for any possible actions in the future as a computer-science major. I asked myself two questions after reading.
1. From a computer scientist’s view, what steps can be taken to ensure that the rights and needs of disabled inmates are met?
2. How can scientists modify the technology or product before application so that society can shift from a fetishistic view of technology to a more holistic understanding of the lives of disabled individuals who rely on it?
Overall, Disability and Visibility” underscores the importance of recognizing disabled individuals as valuable members of society, reframing the discussion around technology, and advocating for better accessibility in all areas of life.
This reading exposed me to more detailed accounts of the difficulties that disabled people experience daily.
I am appalled by the constant entitlement that able-bodied individuals possess throughout each excerpt. After learning about the inefficiency of Access-A-Ride—the hours of waiting for a ride, difficult pick-up locations, five-minute waiting time for passengers, limited bags—the rudeness and lack of empathy some drivers possessed was infuriating. Having to justify the usage of one’s cyborg leg (by not using it too little or too much) to an insurance company in order to receive another leg was nonsensical to me. Why should one have to use it just the right number of times rather than however little (or much) they would like to use it—especially when people with non-cyborg legs have the choice to do so? Jeremy Woody’s account of his experience in disciplinary court, where in addition to the lack of an ASL interpreter, was told “Okay, you have nothing to say? Guilty” was shocking to me. In a situation where decisions are life-changing, not even allowing someone the ability to communicate and defend themselves is cruel. Society does not seem to provide easy accessibility when given the resources and opportunities to do so, and when it does, these solutions are perceived as privileges by those who don’t need them. How does creating accessible alternatives (Access-A-Ride) when all other alternatives (general public transportation like the subway, buses, taxis, etc) are inaccessible to disabled individuals scream privilege?
Furthermore, there appears to be this reoccurring issue of non-disabled individuals “helping” disabled people that more often than not disadvantages or harms them. For example, when the driver who picked up Britney Wilson said he’d stop traffic so that she could cross while the light had not changed. She voiced her uncertainty and discomfort, yet he ignored her request and followed through with his own plan. Another example is the food distribution program on reservations. The government “counters” food insecurity, yet the prices of food are extremely high, and the food quality is past expiration and unhealthy. This ends up affecting general health and life span, ultimately preventing traditions from being passed down and continuance of culture. Even if non-disabled individuals’ intentions are well, it is more important to listen to and understand what disabled individuals are asking from us, as they are the ones who must face the consequences.
Finally, Lateef McLeod’s portion demonstrates how doable it is to have accessibility built in, rather than addressed as an afterthought: “Everybody who has an iPhone can use Siri, and Siri is a form of assistive technology for a lot of people with disabilities… When more people think of it as a standard feature, it could only help everyone” (224). This reminded me of a fully accessible playground in Los Angeles called Aidan’s Place. Everything in the playground is wheelchair accessible, and anyone regardless of ability can play there and interact with others. By having accessibility built in, the playground helps foster a community without ableist and harmful views that have been normalized in so many communities.
That was a really gripping reading. I was kind of trying to think of what algorithmic approaches could be applied to help out these different individuals. The transport one could probably benefit from a shortest path algorithm or maybe some variation of the traveling salesman problem? But for the most part these readings were like actually so far beyond an algorithm. I am interested to see where this class goes. My gut says that computer science can’t really do much to fix the problem of just how society views and treats those with disabilities. That’s not an optimization issue. Maybe if these issues are exacerbated by different larger issues with optimization we could come to understand the role that algorithms could play there. For example, would the access-a-ride service treat riders so poorly if they weren’t so pressed for time? If we were able to optimize the ride service in such a way as to give the driver plenty of time to pick everyone up, and nobody is waiting on the side of the road, then maybe we don’t run into “entitlement” issues. Also, believe me, I know that the urination issue runs deeper than this driver needing to go to the bathroom, but if he had time to go to the bathroom at some point during the day then nobody would have ever even figured out that this dude feels comfortable peeing in front of his clientele.
Right now I don’t believe that any sort of optimized algorithm will be able to solve inequalities and make the population of the United States treat those with disabilities better. I do think that optimization algorithms give people a better chance of being on their best behavior, and I think this because it at least allows people to reduce the amount of stress they could be under in some way.
Discrimination among body disabled people has been a huge social problem. In the reading, the author uses the qualitative research method to interview those people and ask about their experiences when exposed to discrimination. Native people cannot be able to get good health care and many of the health issues are a direct result of colonialism; Deaf people are being expelled from the class and isolated in prison; And sex assaults are happening on disabled people on Access-A-Ride. It is and always is a large problem that leads to inequality in resources and opportunities for those people.
Currently, some of the technology can act as assistants to help those people although there remain some problems. As it was said in the reading: “No one is supposed to pay a high bill for walking. ” (74) They still deserve a life with better accessibility. AAC helps people to have a better way of communicating although it needs a long time to practice and learn. The cyborg parts give people a way to balance more easily, but they are still not flexible enough. Besides, those are some expensive devices that are hard to afford, especially for those without insurance.
I believe there is something more than technology and society can do to help assist people. I am wondering if some better machinery devices could be created to better improve their life with low financial burdens. Society and government are supposed to provide better financial support in improving the accessibility of technology. A better app should be developed to help with the Access-A-Ride to assist with the communication between passengers and drivers. Accessibility is especially important to be functionalized in school to make the disabled visible and be noticed by what they may need in daily life. And disability solidarity should be supported by more and more people to make their words heard.
Unfortunately, “The Erasure of Indigenous People in Chronic Illness” by Jen Deerinwater touches on some issues I have experience with. I am a member of the Miami Tribe of Oklahoma and am related to the tribal chief. Some of my family members are more involved with the tribe, and my grandmother grew up close to the reservation. It is not a place where anyone wants to be. As discussed in the text, reservations often receive little support and are barely standing. It was not only until the 1990s that Canada ended their “Reeducation Schools” where indigenous children were kidnapped from their homes, placed in inhospitable conditions and often dying in the process. I don’t often mention my indigenous heritage, but when I do, I am often met with questions as to why I don’t know the culture well or speak the language. The Myaamia language is now extinct, or rather intentionally destroyed by settlers. Colonization often happens in very subtle ways. Indigenous peoples have been forcibly assimilated into a society they had no desire to be involved with. Then, they are met with the attitude that they are not indigenous enough. Worse, even, is that this attitude is not only external. There are slurs intended for indigenous peoples to be used against indigenous peoples who are not “pure” enough. Still to this day, our blood quantum is measured for purity by both the government and the tribes themselves so as to judge who may be considered part of the tribe. It’s all just very upsetting and yet so few people are aware or care enough to help. Genocide of indigenous peoples has not ended, it is still ongoing.
All of these stories were really impactful, and I feel grateful towards all these authors for sharing their experiences, however painful.
Britney Wilson’s story resonated with me in particular. I am from New York City, and even though I am able bodied I have family members that are disabled. Public transportation remains widely inaccessible. There are entire sections of the city that my relatives have not seen because of lack of transportation, despite living there their whole lives. Most of my family members, including my immediate family, are low-income immigrants from West Africa, and cannot afford treatment, accommodations, or therapy that would aide their daily lives.
Much like Jen Deerinwater, most of my family has faced some form of medical racism/discrimination, which further alienates them from engaging with the city. These readings resurfaced a lot of personal and peripheral experiences myself, my friends, and my family members with intersecting identities have had growing up/living in New York. I appreciated how all of these authors mentioned how their other identities informed their disabilities, because I think it is easy to consider marginalized people as a monolith.
I know strides are being made in the disability rights movement, but I also think there is still some air of caution in conversations about disability and disabled people. Which makes sense, people often don’t want to say the wrong thing, or just don’t have enough experience talking about it. I think in relation to our course, and the CS curriculum as a whole, accessibility should be at the forefront of how we approach problem solving. Outside of strictly assistive technology, all of us have an obligation to think about the variety of identities that will be engaging with things we build/code.
Having read the excerpts, the common thread that jumps out most to me about the problems people with disabilities face is communication, and more often, a lack of it. Often, the problems in these anecdotes seem completely soluble to people looking in, but due to their associated disabilities, those problems become almost insurmountable because the victims don’t have the ability to voice the concerns, and/or that their society and their environments have no awareness or regards for such issues.
Take for example the essay “The Isolation of Being Deaf in Prison”. Not only does being deaf make it hard for the author to communicate, but also his prison guards and wardens have no patience for him likely because of who he is: a prisoner. This makes hiring an ASL interpreter a luxury, let alone expecting the people in charge to try and understand his concerns. The author’s anecdote of not being able to say “Not guilty” resonates most with me, as it depicts the someone completely infuriated and drowned by an environment which has no regards for his disability. This reminds me of a video I saw online which involves a deaf driver being pulled over, handcuffed, shouted at, and pressed against the sidewalk by the police. Without his main form of communication (i.e. his hands), it’s impossible to understand police instructions, yet that is taken as obstruction and failure to comply.
Along the same lines, another anecdote that resonated with me was “The Erasure of Indigenous People in Chronic Illness”, where author Jen Deerinwater tells the story of her inability to access appropriate healthcare. Aside from little daily interactions with others that are filled with insensitivity, she is a victim to a systematic disadvantage where health care policies do not apply to her people. Despite increased health risks introduced by colonialism, the Indian Healthcare System (IHS) does not take into account various factors that make the life of a minority with diseases like hers incredibly difficult. Personally, as a non-American, I cannot fully comprehend how dire these problems are because of my inexperience with American culture, healthcare system, and politics. And by her anecdote, it seems that the voice of her people are largely drowned out and not accounted for in the policy-making process.
In short, the essays were greatly informative of the various hardships that people with disabilities face on a day-to-day. The situation worsens when they are put in difficult conditions or environments, which create a compound effect that may appear insurmountable. As someone who is new to this topic, it surprised me to learn that people with disabilities are the largest group of minority in the U.S., and I want to learn more about this group, the hardships they face, and the ways technology and algorithms can better or worsen their lives.
The reading brought to light what some minorities go through based on their identities and it really has brought a new light on different situations that I wasn’t aware of. The story that was the most interesting to me is “The Erasure of Indigenous People’s Chronic Illness”. The reason that the story was so interesting to me is because of the different struggles that the Native Americans go through, and how they are still dealing with them to this day.
I found the collection of essays to encompass a wide range of experiences, and appreciated starting the course out with testimony/ lived experience. I think in some disciplines, these kind of accounts are often devalued or not considered valid evidence upon which to base scholarship/ theory, but when it comes to identity and marginalization, it is important to resist generalizing/ universalizing experience. The wide range of diabilities and needs described in the selections, actively rejected this dangerous over-universalization, and offered a solid foundation to build off as we continue to discuss identity.
The views and opinions expressed on individual web pages are strictly those of their authors and are not official statements of Grinnell College.
Copyright Statement.
This reading provides us with a taste of what minority groups experience regularly, and what is especially striking about this reading is how each section’s narrator depicts their experience––in such explicit detail that the reader feels like they are experiencing it with them in a sense. Often the reader experiences these stories with a feeling of discomfort: when Jen Deerinwater was ridiculed, belittled, and denied medical aid simply because of their Tsalagi origin, or, due to the lack of an ASL interpreter and his hands being bound, Jeremy Woody––who is deaf––was declared guilty in disciplinary court, or when Britney Wilson with cerebral palsy was helpless and preparing for the worst when her transit driver urinated in front of her. Reading these experiences leaves the reader horrified and enraged for these people who were wronged by the American system. Disability and Visibility works to bring attention to the treatment of those in America whose needs are not met as a result of possessing a trait that is an integral part of their identity, and with this novel simply existing and people reading the stories that it has to tell helps achieve that.
I have a few questions that seem to build off of each other, so I will put them together: What part(s) of the reading made you uncomfortable? When you were done with it/them, how did it make you feel? Was anything striking brought to your attention that you had not been aware of before this reading?
The readings illustrate how disabled and minority people are treated and what they feel in daily life. I have never come across this type of reading before, and it is truly shocking.
The government should provide more support and resources for disabled and minority people by investing in and updating society. However, it is important to note that the government does not possess an unlimited amount of money and its priorities are investments for people without disabilities/majorities. Therefore, it is crucial to find ways that are either inexpensive or beneficial for both groups of people.
One of the inexpensive options to improve the environment around disabled and minority people is to educate people without disabilities/majorities by spreading first-person stories. It makes people without disabilities/majorities understand the hardships of people with disabilities/minorities and possibly changes their behavior.
Investments in technology are a great way to satisfy the needs of both the majority of people and the people with disabilities/minorities. McLeod noted how he utilizes iPhones/iPads. It illustrates that technology for people without disabilities/majorities can be a great help for disabled and minority people. If the government and private sectors invest in such technologies, both groups of people are able to get benefits.
It is easy to say that the government needs to support disabled and minority people, however, we need to understand how the government decides fiscal plans and utilizes its decision-making system.
Though this is a grim outlook, I hope investment and progress in technology will transform society so no one gets behind.
This is not the first time I’d read this text, or pieces of it, but it hits hard every time. Written as an anthology, Disability Visibility seeks to highlight the diverse experiences of disabled individuals of the 21st century, and how institutional ableism intersects with other identities and systems of oppression which include race and indigineity, the justice system, and normative appearances of able-bodiedeness just to name a few.
One of the pieces that struck with me the most deeply was Common Cyborg by Jillian Weise. As both a disabled person and an aspiring assistive technologies researcher, I’m used to viewing assistive technologies as a generally positive thing. In the cases in which I’ve used them, I’ve been able to better interact with my built environment and my aim is that the tools I may one day build can do the same for others. I seek for these tools to be normalized, a sentiment mirrored by Gaining Power Through Communication Access (the podcast transcript), where Lateef McLeod spoke on the iPad as an AAC device. However, Common Cyborg challenged this notion as AT as a net positive, not because it should not be used or needed by disabled folk, but by the ways assumption of use is complicit in the perpetuation of systemic ableism. Disabled folk are therefore expected to use these technologies in pursuit of mimicing ablebodied and mindedness as closely as possible, even to the point of usurping cultures that exist within the disabled community, such as the pressure for deaf individuals to use hearing aids, or “better yet” the unseen cochlear implant, and abandon their often native language of ASL which has a great cultural significance as well as a communication one, and be grateful for this enforced “cure”. This piece was interesting juxtaposed against those which were explicit descriptions of the horrors of ableist injustice: Jeremy Woody was imprisoned bc there was no ASL interpreter for his defense in court, and Jen Deerinwater was denied access to culturally competent medicine that honors both disability and indigineity—or even one of the two—and paints a damning picture of the role of technosolutionism as it inhabits our ableist world. We want to see technologies as part of a solution, but enforcing their use and denying disabled folk agency in when and where to allow assistive technologies to be part of their lives, it is instead a profound force for deepening the problem.
It is always difficult to understand the way in which others experience the world, especially when there are differences in identity that drastically reshape reality for another person. Britney Wilson’s excerpt, “On NYC’s Paratransit, Fighting for Safety, Respect, and Human Dignity,” was much like the other stories in this reading in the way that it presented a different reality than the one I experience daily, but it felt exceedingly real due to the mundane nature of the events. Wilson’s entire piece centered on the increased demand for public transportation by disabled individuals such as herself. Transportation, something I typically take for granted, is an inescapable need for nearly everyone, and that need is only heightened with the inability to walk, which is why Wilson’s descriptions of the added nuisances of poorly designed routes and exceptionally long wait times are so effective. Experiencing these alone on a semi-regular basis would be enough to piss off anyone, but the way in which Wilson is completely at the mercy of the system is striking. Moreover, her description of the driver urinating in front of her comes across as completely unnerving and almost minimizes the systemic issues, since there is an imminent threat of physical and psychological harm. As someone who has never felt the powerlessness that her writing exudes, it is difficult to rationalize an alternative reality such as this, but valuable for the sake of forcing that consideration.
The section of Disability Visibility that struck me as the most interesting was “Common Cyborg,” by Jillian Weise. Not only does the piece discuss the categories used to name people with different abilities, but it discusses how these names can isolate these individuals in society, allowing society and engineers to justify control over how those with different abilities interact with the world. For example, Weise writes, “The cyborg is the engineer’s dream. The engineer steers and manipulates the human to greater performance” (Weise 65). Engineers project their own technical desires onto those with physical disabilities, like granting those with prosthetics a greater ability to walk or run than they had before. Instead of considering the wants of the user, engineers assume that users of prosthetics want greater performance. Or, engineers may require that the end user stay within a certain weight range for their prosthetic to work (Weise 65). As Weise points out, this appears to be a part of a trend where society prefers to “cure” the differently abled, not accommodate them into society (Weise 65).
Overall, Weise’s analysis is important in that it highlights the importance of engineers, including software and hardware engineers, to consider the preferences of users. At the same time, it reveals how some hardware or software may have an increased responsibility to consider user feedback, particularly if it may influence the quality of life for an individual. Not only can it be difficult to measure improvements in quality of life, however, improvements in quality of life may not necessarily be desired by the end user. The use of prosthetics or cochlear implants can make it difficult for the physically disabled or the deaf to connect with members of their community, to connect with their identity.
Monday’s reading, Disability Visibility, brought together a collection of personal accounts of the everyday difficulties of being a minority and/or a disabled person. Several stories grabbed my attention but I would like to highlight the stories of Jen Deerinwater and Britney Wilson.
Jen Deerinwater’s essay highlights some facts about being an Indigenous person in America. Each fact brought into the essay underlined injustice and crimes the majority-white American Government has committed against the Indigenous population for hundreds of years. For a population to “have the highest rate of suicide, diabetes, autoimmune diseases, heart disease, murder, and alcohol and drug abuse” (p. 50) points to an extreme amount of negligence by the Government. Healthcare available to Indigenous People specifically exemplifies this negligence as Deerinwater mentions how there is virtually no reproductive healthcare and Indigenous peoples are only allocated $1,297 in Healthcare funding per person (p. 49). In addition to facts, Deerinwater provides her personal experiences. Through her own experiences, it became evident to me some of the privileges I have, such as access to good healthcare, that I sometimes turn blind to.
I have been on New York City public transportation hundreds and hundreds of times year after year. However, I have rarely paid attention to the Access-A-Ride. Wilson reveals the struggles of being a disabled person who relies on Access-A-Ride; she makes it clear that it is a mismanaged system with a serious concern at times for the safety of its passengers. Wilson’s story of getting peed in front of by the driver is a disgusting image to imagine especially as she must rely on the same person for her disembarkment and thus overall safety. This scene in particular as well as the general disarray of the Access-A-Ride shows disabled people treated as second-class citizens. The outrage of Britney Wilson is both granted and saddening. The daily disappointment and expectation of travel to fail you when you have no other choice should not be the norm.
All the texts in the reading for class on Monday were uncomfortable for me. However, each text was important. I think we must read texts like this, for societal and systemic inequities are never removed from anything. Learning about these extensive difficulties that minorities and disabled groups experience can help us see where, why, and how these same issues extend into our world of computer science.
Some questions I had:
Were the pieces collected at large or were they submitted directly for publication?
The iPad was mentioned as an important tool but is this still a truly cost-effective option?
Was I truly ignorant of some of these issues like the Access-A-Ride or did I look past them?
I thought this collection was fascinating and hard-hitting. I thought the huge variety in writing styles (unintentionally or not) mimicked the vast differences in experiences of people who might all identify under the same umbrella. As for the stories themselves – while not intending to compare trauma – for me, I was most stuck with the visual of the conclusion of Dr. Wilson’s piece as well as the sense of isolation and helplessness of Jeremy Woody’s.
Starting with Dr. Wilson’s piece, and even without the urination (a situation which I cannot imagine being in and feel like anything I say wouldn’t do that encounter justice), the delays and inconvenience of the system would not be tolerated if it catered to a more general population (imagine if the MTA went past stops and went back – there would be an uproar). Even beyond that, it’s not even the same as MTA since that isn’t necessary for most of its riders, while Access-A-Ride is a service to allow mobility and autonomy. For whatever reason, thinking about its under-funding reminded me of a Jordan Klepper clip where he’s interviewing a Trump supporter about gay marriage and she says
“my problem with gay marriage is that the gays want more than regular couples!” to which he responds
“by more do you mean equal?”
“Yeah, equal”
“And that’s just too much?”
“Yes!”
To be completely honest, I don’t have a good way of writing about the horror that Woody’s story shared. I’ve rewritten this section several times and it all comes across as detached or clinical, which doesn’t feel appropriate. Maybe that’s one of the things I can try to gain from this class, but it feels really hard to deal with this type of content in an appropriate and informative way without minimizing or homogenizing the experiences of very internally diverse groups. I hope to get better at this.
I really appreciate this comment, Brian. We (humans, Americans) like to put people into buckets or categories. What are the consequences of that? What do we gain? What do we lose?
-Professor Eikmeier
These excerpts from Disability Visibility, through detailing the experiences of various disabled individuals in different aspects of their lives, shed light on the ableist norms of our society and display how ableism is experienced differently by people, informed by their unique intersectional identities.
In the case of Deerinwater, for example, we see that medical ableism has the tendency to function through a logic of erasure for Native individuals, co-opting the particular strategy that settler colonialism utilises against Natives and their culture. Additionally, through this and Deerinwater being refused pain medication, we are able to see the operation of what Indigenous studies professor at Colorado College Dwanna Mckay calls “legitimized racism” in the ableism they experience. Both Deerinwater and Harriet Tubman Collective construct racism and ableism as inextricably entangled in informing the experiences of individuals with native and disabled, or black and disabled identities.
Harriet Tubman Collective write that disabled individuals are “disabled by social and institutional barriers”. Unfortunately, this is an understanding that larger society does not seem to have, as can be seen in the rhetoric and actions surrounding services provided for accessibility. One such example is that of Access-A-Ride detailed by Wilson, as if the inconvenience and indignity of using public transport should be expected and borne by disabled individuals even though non-disabled people do not have to experience the same when using the subway. It seems to signal that institutions believe that services such as Access-A-Ride are a not something that is remedying the lack of accessibility of the New York Subway, but a privilege given to disabled individuals above and beyond what society decides they deserve. Then, it is clear to see that ableist norms view disabled individuals as subhuman.
In conjunction, I also think that each of the chapters illustrate that ableism takes on so many subtly different forms and is so normative in society that, unless we experience it, we are not truly able to comprehend it and, therefore, are likely to perpetuate our internalized beliefs in the technological solutions we design. This then points to the necessity of having disabled individuals in tech, for example, to better ensure the production of end products that are truly accessible and equitable by giving them the agency instead of paternalistically prescribing solutions.
I really appreciated the format of this reading/book, as I felt I was exposed to the problem of discrimination, inaccessibility, and erasure in the many (and sometimes unexpected) ways it could come about.
I was particularly struck by the attitude in the section titled “The Isolation of Being Deaf in Prison.” It was a completely unimaginable circumstance, to be surrounded by people that you could not communicate with, and actively being denied the resources that would allow you to enrich and sustain yourself while imprisoned. I thought this spoke volumes not only about the attitude that many institutions seem to have about providing supporting services for disabled people, but about our government’s consideration of incarcerated people as well. Our prison system is so focused around punishing and denigrating criminals that paying for an interpreter, someone who would help a deaf person integrate into the community they are in, was simply unimaginable and denied almost every step of the way.
The “Common Cyborg” introduced an aspect of identity that I often fail to consider. Many people lament about their own dependence on technology, but few of these people would have their lives substantially changed if they were without it. For most, technology is the difference between being able to get directions or take a picture, but for many others it is the thing that allows them to communicate, move, or perform another act that they would otherwise have difficulty doing. I also appreciated the “tryborg” title for those who have incorporated technological elements into their body for pleasure, a confusing pursuit when many who so need similar technology go without it.
The section on the NYC Paratransit system also made me think about the lack of attention and resources we as a society allocate to disabled people. The problem is a very complex one, to be sure. It requires a very efficient system to make decisions quickly and intelligently, all while accounting for myriad other factors. Still, it was not easy to build an international highway system, dig the Panama Canal, or put a man on the Moon. All of these problems were solved because we cared to solve them, and disabled people are forced to rely on a confusing, derogatory, and uncaring system to get around the city.
Disability Visibility was a lot more eye-opening than I imagined. I haven’t thought much about ableism and how those with a disability or any sort of problem can be deeply affected in society. While reading through the experiences of other people, I was shocked, disappointed, and concerned with how we are currently dealing with these heavy issues.
I was impacted by the experience of Wilson and NYC paratransit. The difficulty with even just trying to get the places with the lack of interest and concern from the drivers makes me in disbelief. It was more shocking when the driver was peeing in front of Wilson and she couldn’t do anything about it. Especially when she tells this story to her grandmother and uncle, and her grandmother says “It would be your word against his. Who’s going to believe you?” (pg. 219). We see that with the unequal treatment due to racism and ableism, it is a disgusting moment to see how Wilson is not able to do much after the experience that she went through. Woody, being deaf in prison, had a similar experience to Wilson and continues to show how it seems to be a pretty common event that occurs to people with disabilities.
In McLeod’s writing, I began to see how technology can assist those in need and how expensive it is compared to phones, iPads, and computers. Seeing McLeod’s conversation with Alice, I began to think about how we could implement such medical-grade technology into devices that are cheaper and provide easier access to those in need, as it is not accessible to everyone due to the cost of the equipment.
Lastly, from the Harriet Tubman Collective, I was not aware of the statistics on how disabled people are more likely to be murdered. It was even more concerning how the platform proposes to help Black people but omits those with disabilities even with the given statistics. These passages have really opened up a lot more issues that I would’ve realized and made me heated at some experiences that people had to go through due to the lack of concern and interest for those in need. I am also wondering how can we help to resolve these issues through technology if possible.
It isn’t necessarily a question about the reading itself but more of a clarification. I was curious about what exactly was going on in the reading on page 68 in Common Cyborg.
I believe your final question is related to the conversation between two individuals on page 68, on whether or not they identify as a “cyborg” when their various assistive technologies are not in use.
-Professor Eikmeier
It is extremely angering and saddening to understand the positions that we put disabled members of our society through. Stemming from what I, in my limited knowledge, believe comes from the U.S.’s deep-rooted ideas of white supremacy, eugenics, and belief in individual monetary capitalistic achievement, we have created an environment where disabled individuals are ignored, institutionalized, and treated as others. Then, of course, as was the case in more than one of the speaker’s cases, if your identity happens to be that of someone who is disabled and a woman, Black, or Native you find yourself in a position where your identities overlap and assistance, understanding, resources, and visibility can become even more difficult to obtain.
The U.S.’s historical view of disabled people can be simply summed up by understanding the Ugly Laws written throughout this country. In Lateef’s poem, he describes the Ugly Laws as laws set up to punish those with visible disabilities or disfigurement if they appear in the public eye. While these laws may not be in practice today, we still have a legal system where the vast majority of young children ending up in juvenile detention centers have at least one disability according to the Harriet Tubman Collective section.
I find that our current structuring of society gives very little help to those who are disabled, as is evident throughout these stories, and I am extremely worried that our political climate is shifting in the U.S. in a way that will increase the damage to those suffering with a disability. As states pass book bans, abortion bans, and bans on affirmative action, it feels like the conversation is shifting away from creating improvements to how we treat people and becoming more focused on retaining what improvements activist have achieved in the past. Conversations about universal healthcare which would alleviate some of the issues Jen Dearinwater faced seem to be further and further away.
I wasn’t familiar with many of these authors before reading these pieces but now I am very interested in their individual works. Each reading highlighted very different stories from very different people, but within all of them was evidence of the disregard, and often disdain, for people with disabilities that is ingrained in American culture. The authors in their own ways also illustrated how our treatment of disabled people is directly tied to our history of oppression towards racial minorities.
Each story describes the author’s respective difficulties of dealing with a world that is constantly upset simply because of their presence. Jen Deerinwater faced abuse from her health care providers, who denied her pain medication and spewed racial slurs at her. Britney Wilson described her horrible experiences with Paratransit in New York, including a driver urinating in front of her. The Harriet Tubman Collective outlined how disabled people are left out of the conversation about race in America, even though they are crucial to understanding anti-Black racism. This all points to a recurring theme of ambivalence towards disabled people from governments, businesses, and other organizations. Accessibility is never at the front of our collective consciousness, and the general reaction towards any attempt to talk about it is that disabled people should be happy to have anything at all.
When accessibility is discussed though, it is often because of some new development in assistive technology. One of the most interesting pieces to me was Jillian Weise’s “Cyborg Concerns” which paints a bleak picture for our relationship with technology, the internet, and futurism. The promise of modern technology is often not for those that would benefit from it the most, as assistive technology is astronomically expensive and engineers and “tryborgs” as Weise calls them are more concerned with the future for themselves than anybody else. As impressive as robotic limbs are, most that would benefit from them will never be able to.
The various excerpts from “Disability Visibility” explore different stories from individuals who are disabled and/or belong to minority groups in the US. Although each story highlights the personal hardships of the individuals, I believe that beyond merely reporting the injustices and flaws in the different accessibility systems, the goal of every excerpt is to create awareness about the importance of treating everyone with dignity and respect, allowing them to feel safe and acknowledged.
In the excerpt “On NYC’s Paratransit,” Britany Wilson states, “The concept of entitlement is familiar jargon in discussions of race and class, and it is just as widespread in the realm of disability. It’s the idea that we are acting as if someone owes us something rather than merely asking to be treated with the respect and human dignity we deserve” (Wilson 210). I think that this quote encapsulates the main problem faced by people with disabilities. Instead of receiving the necessary help, they must be grateful that someone or something is doing the bare minimum for them.
Another excerpt that addresses the same idea is “Gaining Power through Communication Access.” Something that I found particularly interesting about the writing style of this excerpt is that it’s a transcript of a podcast dialogue. This allows us to dive directly into an ongoing discussion about disabilities. There are two points I would like to further discuss regarding this excerpt. First of all, the debate about the distinctions between technology and assistive technology is extremely interesting. I had never considered how certain assistive technologies are seen as standard features by the majority of people. I find this problematic mainly because if most people view such technology as essential features, it undermines its entire purpose. The second intriguing aspect is the approach of seeking visualization through art and communication. I believe that by the end of the poem when Lateef shares his poem, he manages to encapsulate all his feelings and thoughts regarding his disabilities while also conveying them powerfully.
Lastly, I’d like to comment on the fact that even though excerpts like “On NYC’s Paratransit” demonstrate how flawed the Paratransit system is, I believe that it still deserves some credit. When I was reading this excerpt, I was truly surprised that a system like NYC Paratransit exists. I come from a third-world country where we do not have anything similar to this, nor any viable alternatives for disabled or elderly people. So even though there is still a lot of room for improvement in this system, I think it’s important to recognize that the United States is much more advanced in terms of accessibility resources compared to most countries.
The neglect and erasure of people with disabilities figures prominently in the readings. The authors describe their personal experience of living with disabilities under systems that can’t or refuse to accommodate them.
Several of the authors try to address this abuse through official or bureaucratic complaint mechanisms. These attempts generally fail, sometimes leading to catastrophic results. When Jeremy Woody is unable to receive an ASL interpreter at a hospital while in prison, he can’t receive vital care, and later finds out that he has cancer. He files several official requests and complaints for the lack of translation, but is denied repeatedly. Similarly, Brittany Wilson describes how after her Access-A-Ride driver pees in front of her, she has no recourse to file an official complaint since she had not thought to record him.
These authors now attempt to make progress through different means: by public appeal rather than formal complaints. This approach is indirect but likely more helpful to their cause. The systems that these authors fight for their rights under — prisons for Woody and public transportation for Wilson — are not only designed without the disabled in mind, their reporting mechanisms are also designed to resist access and change. As we work to improve access to disabled access to these systems, we must also work to improve their capacity to change and adapt to feedback. Otherwise, the bureaucracy will continue to stifle access.
I personally find the reading very eye-opening and captivating, yet very disturbing at the same time. Growing up as an abled person myself, I never really put too much thought into what it would feel like to live life as a disabled. Therefore, it feels almost enlightening to read about the experiences of people with different forms of disabilities, all from a first-person point of view but in very different settings and with different narrative styles.
The story that took me the most time to read and process was “The Isolation of Being Deaf in Prison”, despite it being on the lower end in terms of length among all the stories. Coming from Vietnam, I was never exposed to accessibility as a topic, and having the privilege to attend a somewhat accessible college gave me a false impression of how this is dealt with in the majority of institutions in reality. I never imagined myself in a situation where I was deprived of all resources and opportunities to enrich myself academically, and denied all access to basic human rights simply because of an inability to communicate any of my thoughts and emotions and the lack of support for that in my surrounding environment. It’s astounding to realize how few people showed empathy for disabled people and how few of them stood up to help or request accommodation on their behalf. It’s also disturbing that most of those times, at least in the author’s specific experience in Georgia’s prison, the institution refused to provide what was requested and needed in compliance with outdated laws and regulations that were not inclusive and accommodating of different circumstances. Even when those rules were not involved, the institution still deliberately and unreasonably made their life more difficult, like when they decided not to pair up deaf people using the same sign language, or choose to pair up people who have no mutual form of communication.
Some of the questions that came to mind after I finished the readings were:
– Have you guys ever heard of experiences like these before, or are they also new to you?
– I personally think spreading personal accounts of experiences like these is a good way to raise awareness of institutional and societal ableism as well as the incompetence in making society more accessible. Were these stories collected? Is there any way to further spread them or encourage people with more varied experiences to speak up?
Disability and Visibility” explores the experiences of disabled individuals within a technologically advanced society, highlighting the challenges they face in terms of identity, representation, and access to healthcare. In the assigned chapter, individuals or groups use a narrative way to describe how disabled people often have to navigate a world that either fetishizes or ignores their conditions, leading to erasure and isolation. One specific example I felt touched on is the story of Jeremy Woody, a deaf individual in prison, who faced immense barriers due to the lack of accessibility. The prison system failed to provide American Sign Language interpreters, hindering his ability to communicate with staff and fellow inmates. This example sheds light on the terrible consequences of neglecting accessibility for disabled individuals, especially within the criminal justice system. This story also expands my mindset of the definition of rights no matter what you did and where you are, citizens deserve their rights.
Another story is from Fen Deerinwater, an Indigenous woman, who vividly illustrates the erasure and dehumanization that disabled individuals often experience within healthcare settings. Deerinwater’s encounters with healthcare professionals repeatedly force her to define herself through racial categories that fail to acknowledge her specific identity as a citizen of the Cherokee Nation of Oklahoma. Her struggles to assert her Indigeneity against the racial classifications created by the settlers highlight the intersection of disability and ethnicity. The questions posed to her, such as “Are you Indian?” or “Tell me about your people,” expose the discomforting gaze of non-Native individuals, treating her as a way to fulfill curiosity rather than affording her the dignity of a patient seeking medical care. In this way, it underscores the importance of recognizing the multi-dimensional identities of disabled individuals and the urgent need to challenge systemic prejudices within healthcare systems.
Personally, I felt discomfort as well as sympathy while reading the text. However, I still strive to call for any possible actions in the future as a computer-science major. I asked myself two questions after reading.
1. From a computer scientist’s view, what steps can be taken to ensure that the rights and needs of disabled inmates are met?
2. How can scientists modify the technology or product before application so that society can shift from a fetishistic view of technology to a more holistic understanding of the lives of disabled individuals who rely on it?
Overall, Disability and Visibility” underscores the importance of recognizing disabled individuals as valuable members of society, reframing the discussion around technology, and advocating for better accessibility in all areas of life.
This reading exposed me to more detailed accounts of the difficulties that disabled people experience daily.
I am appalled by the constant entitlement that able-bodied individuals possess throughout each excerpt. After learning about the inefficiency of Access-A-Ride—the hours of waiting for a ride, difficult pick-up locations, five-minute waiting time for passengers, limited bags—the rudeness and lack of empathy some drivers possessed was infuriating. Having to justify the usage of one’s cyborg leg (by not using it too little or too much) to an insurance company in order to receive another leg was nonsensical to me. Why should one have to use it just the right number of times rather than however little (or much) they would like to use it—especially when people with non-cyborg legs have the choice to do so? Jeremy Woody’s account of his experience in disciplinary court, where in addition to the lack of an ASL interpreter, was told “Okay, you have nothing to say? Guilty” was shocking to me. In a situation where decisions are life-changing, not even allowing someone the ability to communicate and defend themselves is cruel. Society does not seem to provide easy accessibility when given the resources and opportunities to do so, and when it does, these solutions are perceived as privileges by those who don’t need them. How does creating accessible alternatives (Access-A-Ride) when all other alternatives (general public transportation like the subway, buses, taxis, etc) are inaccessible to disabled individuals scream privilege?
Furthermore, there appears to be this reoccurring issue of non-disabled individuals “helping” disabled people that more often than not disadvantages or harms them. For example, when the driver who picked up Britney Wilson said he’d stop traffic so that she could cross while the light had not changed. She voiced her uncertainty and discomfort, yet he ignored her request and followed through with his own plan. Another example is the food distribution program on reservations. The government “counters” food insecurity, yet the prices of food are extremely high, and the food quality is past expiration and unhealthy. This ends up affecting general health and life span, ultimately preventing traditions from being passed down and continuance of culture. Even if non-disabled individuals’ intentions are well, it is more important to listen to and understand what disabled individuals are asking from us, as they are the ones who must face the consequences.
Finally, Lateef McLeod’s portion demonstrates how doable it is to have accessibility built in, rather than addressed as an afterthought: “Everybody who has an iPhone can use Siri, and Siri is a form of assistive technology for a lot of people with disabilities… When more people think of it as a standard feature, it could only help everyone” (224). This reminded me of a fully accessible playground in Los Angeles called Aidan’s Place. Everything in the playground is wheelchair accessible, and anyone regardless of ability can play there and interact with others. By having accessibility built in, the playground helps foster a community without ableist and harmful views that have been normalized in so many communities.
That was a really gripping reading. I was kind of trying to think of what algorithmic approaches could be applied to help out these different individuals. The transport one could probably benefit from a shortest path algorithm or maybe some variation of the traveling salesman problem? But for the most part these readings were like actually so far beyond an algorithm. I am interested to see where this class goes. My gut says that computer science can’t really do much to fix the problem of just how society views and treats those with disabilities. That’s not an optimization issue. Maybe if these issues are exacerbated by different larger issues with optimization we could come to understand the role that algorithms could play there. For example, would the access-a-ride service treat riders so poorly if they weren’t so pressed for time? If we were able to optimize the ride service in such a way as to give the driver plenty of time to pick everyone up, and nobody is waiting on the side of the road, then maybe we don’t run into “entitlement” issues. Also, believe me, I know that the urination issue runs deeper than this driver needing to go to the bathroom, but if he had time to go to the bathroom at some point during the day then nobody would have ever even figured out that this dude feels comfortable peeing in front of his clientele.
Right now I don’t believe that any sort of optimized algorithm will be able to solve inequalities and make the population of the United States treat those with disabilities better. I do think that optimization algorithms give people a better chance of being on their best behavior, and I think this because it at least allows people to reduce the amount of stress they could be under in some way.
Discrimination among body disabled people has been a huge social problem. In the reading, the author uses the qualitative research method to interview those people and ask about their experiences when exposed to discrimination. Native people cannot be able to get good health care and many of the health issues are a direct result of colonialism; Deaf people are being expelled from the class and isolated in prison; And sex assaults are happening on disabled people on Access-A-Ride. It is and always is a large problem that leads to inequality in resources and opportunities for those people.
Currently, some of the technology can act as assistants to help those people although there remain some problems. As it was said in the reading: “No one is supposed to pay a high bill for walking. ” (74) They still deserve a life with better accessibility. AAC helps people to have a better way of communicating although it needs a long time to practice and learn. The cyborg parts give people a way to balance more easily, but they are still not flexible enough. Besides, those are some expensive devices that are hard to afford, especially for those without insurance.
I believe there is something more than technology and society can do to help assist people. I am wondering if some better machinery devices could be created to better improve their life with low financial burdens. Society and government are supposed to provide better financial support in improving the accessibility of technology. A better app should be developed to help with the Access-A-Ride to assist with the communication between passengers and drivers. Accessibility is especially important to be functionalized in school to make the disabled visible and be noticed by what they may need in daily life. And disability solidarity should be supported by more and more people to make their words heard.
Unfortunately, “The Erasure of Indigenous People in Chronic Illness” by Jen Deerinwater touches on some issues I have experience with. I am a member of the Miami Tribe of Oklahoma and am related to the tribal chief. Some of my family members are more involved with the tribe, and my grandmother grew up close to the reservation. It is not a place where anyone wants to be. As discussed in the text, reservations often receive little support and are barely standing. It was not only until the 1990s that Canada ended their “Reeducation Schools” where indigenous children were kidnapped from their homes, placed in inhospitable conditions and often dying in the process. I don’t often mention my indigenous heritage, but when I do, I am often met with questions as to why I don’t know the culture well or speak the language. The Myaamia language is now extinct, or rather intentionally destroyed by settlers. Colonization often happens in very subtle ways. Indigenous peoples have been forcibly assimilated into a society they had no desire to be involved with. Then, they are met with the attitude that they are not indigenous enough. Worse, even, is that this attitude is not only external. There are slurs intended for indigenous peoples to be used against indigenous peoples who are not “pure” enough. Still to this day, our blood quantum is measured for purity by both the government and the tribes themselves so as to judge who may be considered part of the tribe. It’s all just very upsetting and yet so few people are aware or care enough to help. Genocide of indigenous peoples has not ended, it is still ongoing.
All of these stories were really impactful, and I feel grateful towards all these authors for sharing their experiences, however painful.
Britney Wilson’s story resonated with me in particular. I am from New York City, and even though I am able bodied I have family members that are disabled. Public transportation remains widely inaccessible. There are entire sections of the city that my relatives have not seen because of lack of transportation, despite living there their whole lives. Most of my family members, including my immediate family, are low-income immigrants from West Africa, and cannot afford treatment, accommodations, or therapy that would aide their daily lives.
Much like Jen Deerinwater, most of my family has faced some form of medical racism/discrimination, which further alienates them from engaging with the city. These readings resurfaced a lot of personal and peripheral experiences myself, my friends, and my family members with intersecting identities have had growing up/living in New York. I appreciated how all of these authors mentioned how their other identities informed their disabilities, because I think it is easy to consider marginalized people as a monolith.
I know strides are being made in the disability rights movement, but I also think there is still some air of caution in conversations about disability and disabled people. Which makes sense, people often don’t want to say the wrong thing, or just don’t have enough experience talking about it. I think in relation to our course, and the CS curriculum as a whole, accessibility should be at the forefront of how we approach problem solving. Outside of strictly assistive technology, all of us have an obligation to think about the variety of identities that will be engaging with things we build/code.
Having read the excerpts, the common thread that jumps out most to me about the problems people with disabilities face is communication, and more often, a lack of it. Often, the problems in these anecdotes seem completely soluble to people looking in, but due to their associated disabilities, those problems become almost insurmountable because the victims don’t have the ability to voice the concerns, and/or that their society and their environments have no awareness or regards for such issues.
Take for example the essay “The Isolation of Being Deaf in Prison”. Not only does being deaf make it hard for the author to communicate, but also his prison guards and wardens have no patience for him likely because of who he is: a prisoner. This makes hiring an ASL interpreter a luxury, let alone expecting the people in charge to try and understand his concerns. The author’s anecdote of not being able to say “Not guilty” resonates most with me, as it depicts the someone completely infuriated and drowned by an environment which has no regards for his disability. This reminds me of a video I saw online which involves a deaf driver being pulled over, handcuffed, shouted at, and pressed against the sidewalk by the police. Without his main form of communication (i.e. his hands), it’s impossible to understand police instructions, yet that is taken as obstruction and failure to comply.
Along the same lines, another anecdote that resonated with me was “The Erasure of Indigenous People in Chronic Illness”, where author Jen Deerinwater tells the story of her inability to access appropriate healthcare. Aside from little daily interactions with others that are filled with insensitivity, she is a victim to a systematic disadvantage where health care policies do not apply to her people. Despite increased health risks introduced by colonialism, the Indian Healthcare System (IHS) does not take into account various factors that make the life of a minority with diseases like hers incredibly difficult. Personally, as a non-American, I cannot fully comprehend how dire these problems are because of my inexperience with American culture, healthcare system, and politics. And by her anecdote, it seems that the voice of her people are largely drowned out and not accounted for in the policy-making process.
In short, the essays were greatly informative of the various hardships that people with disabilities face on a day-to-day. The situation worsens when they are put in difficult conditions or environments, which create a compound effect that may appear insurmountable. As someone who is new to this topic, it surprised me to learn that people with disabilities are the largest group of minority in the U.S., and I want to learn more about this group, the hardships they face, and the ways technology and algorithms can better or worsen their lives.
The reading brought to light what some minorities go through based on their identities and it really has brought a new light on different situations that I wasn’t aware of. The story that was the most interesting to me is “The Erasure of Indigenous People’s Chronic Illness”. The reason that the story was so interesting to me is because of the different struggles that the Native Americans go through, and how they are still dealing with them to this day.
I found the collection of essays to encompass a wide range of experiences, and appreciated starting the course out with testimony/ lived experience. I think in some disciplines, these kind of accounts are often devalued or not considered valid evidence upon which to base scholarship/ theory, but when it comes to identity and marginalization, it is important to resist generalizing/ universalizing experience. The wide range of diabilities and needs described in the selections, actively rejected this dangerous over-universalization, and offered a solid foundation to build off as we continue to discuss identity.