[Access Lunch] Happening Now: Accessibility Lunch Reading Group
Cynthia Bennett
cbennet2 at andrew.cmu.edu
Thu Apr 1 13:33:18 EDT 2021
I realize I forgot to send the link again today.
Here is where we are meeting now for accessibility lunch.
Cynthia Bennett (she, her) is inviting you to a scheduled Zoom meeting.
Topic: Accessibility Lunch
Time: This is a recurring meeting Meet anytime
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Cynthia L. Bennett<https://www.bennettc.com/>
Pronouns: she/her<https://www.mypronouns.org/she-her>
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From: Cynthia Bennett
Sent: Thursday, April 1, 2021 10:12 AM
To: 'Samantha Reig' <sreig at cs.cmu.edu>; 'Sara Kingsley' <skingsle at cs.cmu.edu>
Cc: Franchesca Spektor <fspektor at andrew.cmu.edu>; 'accessibility-lunch at lists.andrew.cmu.edu' <accessibility-lunch at lists.andrew.cmu.edu>
Subject: RE: [Access Lunch] Reading for this Week
Hi,
I am resending the previous email with one phrase added that I left out.
Hi Everyone,
Thank you for all of the contributions to this important discussion. I am reminded that we will make mistakes. While addressing them is imperative to maintaining a safer and accountable community, we can also do more to proactively prevent harm and keep our attendees who experience disabilities and are otherwise minoritized from the burden of explaining the impact of such harm and educating us.
Sara, I am sorry that the readings caused harm and that it has led you to share personal information and unnecessarily educate us. I am taking action by learning how to better facilitate a safer space, spend more time on facilitating this group which has slipped from my time commitments lately, and pass these practices onto successive facilitators.
Franky, I appreciate your response and I maintain hope that we can continue to grow during the reading group today.
As a first step, I ask that we all commit to this: readings should never be chosen by one person alone. As facilitator this semester, I would like discussion leads to send readings to me so we can discuss their appropriateness and any content warnings that may need to accompany their assignment.
I am ever learning but a couple of takeaways I can offer right now:
*** The first takeaway contains discussions of medical rationing, in the next paragraph. ***
First, while it is important to explore a variety of perspectives, ableist viewpoints on technology and disability being some, the materials that scaffold these perspectives must be chosen with intent commensurate with the potential harm they can cause. Assessing this potential requires us to first pause. Assigning readings without spending time with them is generally not a good idea. I am not saying anyone has done this; I am offering it as a general best practice. More specifically, if you’d like for us to explore topics as a group that cause egregious harm, you can choose readings that raise awareness of these important topics from a viewpoint that ultimately affirms people with disabilities are legitimate humans who do not need to be changed. While we may disagree on many things, the legitimacy and dignity of people with disabilities is a baseline that we all agree with. If that statement does not resonate with you or raises questions, I request that you reach out to me and we can discuss things you might do to work through your questions and concerns. Back to negotiating difficult topics, as a concrete example, I offer Alice Wong’s leadership on medical rationing during the COVID-19 pandemic.<https://disabilityvisibilityproject.com/2021/01/10/ep-94-healthcare-rationing/> To discuss this topic, we could choose a myriad of articles written by people from many backgrounds an lived experiences. But negotiating such a topic with Alice Wong let’s us do so with a backdrop of disability affirmation. Her writing and commentating via her podcast regularly affirms the legitimacy and dignity of people with disabilities. Coming to this conclusion requires examining her other work and understanding her position to it. I know this is not always possible, but we can often learn more about the context and authors of our readings with effort. Choosing the above linked podcast also allows us to explore the topic of medical rationing with a perspective of someone who is arguably among those most impacted by it, being that she is a disabled Asian-American woman whose medical diagnoses are among those that might be classified as less deserving of the highest quality medical care. Relating this back to this week’s discussion, we could explore ableist disability erasure and techno solutionist approaches toward these ends by examining the texts by Jillian Weiss and Laura Forlano, as they directly commentate on the power medical and tech industries have on their bodies. The 3rd article could be mentioned in passing and with warning but is not needed. Franky has already recognized this in her follow-up message.
Second, we are learning that language matters but there is seldom agreement on what language is most respectful. With that in mind, what I can offer as hopefully concrete and useful advice is this. As we read more disabled authors, we will read language they have claimed to refer to their own lived experience. This is their right and a form of resistance as this language has been/is still used to dehumanize them and harm them. Again, we should pause before we use language. In reflecting where we have read it, we can make better decisions about what language is appropriate for us to use given our position to the topic. While we have spent time this semester discussing the inappropriateness of taking up language nondisabled people have assigned but which disabled people largely find problematic (I think of phrases like ‘special needs’), we should also recognize when a person with disabilities is reclaiming a term that would not be appropriate for nondisabled people, or even sometimes people with disabilities who do not have that specific experience, to use. To offer my own thought process as an example (which I am open for correction), as a visibly disabled person who uses both low and high tech which is regularly scrutinized and manipulated without my consent, I do sometimes use words like ‘crip’ to describe myself and my similarly-disabled friends. I do not however, use words associated with mental health conditions that have been used to degrade people who have those experiences. Even though I am disabled, I am not harmed by the mental health industrial complex in ways that have systematically harmed me. While we can reflect on and adapt our own language use, being a better ally and asking others to change their language can be tricky since we don’t want to force people to disclose their personal information. For example, in writing the previous example, I realize that we have been working at home for a year and some people join us who aren’t even in Pittsburgh. It is reasonable that someone could interpret my use of the word ‘crip’ as inappropriate as it is quite likely they have never seen my technologies or disabilities in action. If you find that someone is using language inappropriately, you might remind the group of appropriate language practices more generally and discuss with a confidant if and how you can directly address their potentially inappropriate language. I am happy to be this person in regard to unpacking language use during the reading group. Back to this week’s discussion, as Sara has mentioned, words like ‘cyborg’ and ‘crip’ are not words that nondisabled people should use. If you want to discuss more specifics about language, I am open to working with you to find the education necessary to traverse your questions.
I will reserve the last part of reading group to discuss how we will move forward with care and to clarify the above takeaways.
I look forward to learning with you later today.
Cynthia L. Bennett<https://www.bennettc.com/>
Pronouns: she/her<https://www.mypronouns.org/she-her>
Twitter<https://twitter.com/clb5590?lang=en>
LinkedIn<https://www.linkedin.com/in/clb5590/>
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From: Accessibility-lunch <accessibility-lunch-bounces+cbennet2=andrew.cmu.edu at lists.andrew.cmu.edu<mailto:accessibility-lunch-bounces+cbennet2=andrew.cmu.edu at lists.andrew.cmu.edu>> On Behalf Of Samantha Reig
Sent: Wednesday, March 31, 2021 7:57 PM
To: Sara Kingsley <skingsle at cs.cmu.edu<mailto:skingsle at cs.cmu.edu>>
Cc: Franchesca Spektor <fspektor at andrew.cmu.edu<mailto:fspektor at andrew.cmu.edu>>; accessibility-lunch at lists.andrew.cmu.edu<mailto:accessibility-lunch at lists.andrew.cmu.edu>
Subject: Re: [Access Lunch] Reading for this Week
Sara and I were discussing this a bit offline, and she shared with me a piece that's pertinent to this conversation. I'm passing it along with her permission: https://assistivetechjustice.medium.com/ableism-and-assistive-technology-926f4097a976
Best,
Sam
On Wed, Mar 31, 2021 at 1:28 PM Sara Kingsley <skingsle at cs.cmu.edu<mailto:skingsle at cs.cmu.edu>> wrote:
Post-note. I should have emphasized that the model regarding artificial pancreas decisions is not quite one of choice due to structural racism. Black and Hispanic people living with T1D do not have equal access to technology or medical care due to the structural racism of the United States.
References:
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4533245/
[2] https://www.healio.com/news/endocrinology/20201231/black-young-adults-with-type-1-diabetes-less-likely-to-use-cgm-insulin-pump
On Wed, Mar 31, 2021 at 1:15 PM Sara Kingsley <skingsle at cs.cmu.edu<mailto:skingsle at cs.cmu.edu>> wrote:
Franky,
I really appreciate the time and care you've clearly put into crafting this note. I appreciate the additional context about Wiese and Forlano. At a future date, if you still have interest, I would be happy to share what I know of our use of artificial pancreases. It's a complicated history that is rapidly evolving, and one that is not a part of the techno-solutionism issue, to my knowledge (though T1Ds are a diverse, very anarchic/autonomous crowd in terms of perspectives). Only until recently, many people were not permitted to use an artificial pancreas unless the management of their type 1 diabetes was at a state that it was considered the medicine or tool of second to last resort. With advances in technology, form factors, and machine learning (to my own surprise AI does sometimes save lives, though it has killed us too), and how those developments have interacted with major policy changes (Affordable Care Act) and pricing/economics, the model of care has changed to one of choice, eg, use the tech that works best for you.
Our community continues to very hotly debate the use of language. For example, a lot of us are trained by medical professionals from a very early age to use person-first language. This is partly because studies indicate that young children thrive better with T1D when their personhood is centered (happy to provide readings about this upon request). We are also, some of us, subjected to harassment about our assistive technology. For example, I lost my high school education to bullying, violence against my artificial organ (having it ripped out), and being called similar terms as cyborg. Not all of us, thankfully, have had those experiences, but we are statistically or systematically excluded from educational institutions (linked readings are below). While a fair number of us do refer to ourselves by a range of terms, as you mentioned, it is not appropriate to refer to our demographic that way or any individual member of our community. These are our organs, we do not have the privilege to wear them on the inside anymore because the internal ones "died" (they still work for other things such as digestion but some of us say our pancreas is dead).
I really appreciate you and this note. I've not really had a critical mass of T1Ds in any space I've had to survive. I'd imagine I'm not the only one here, but not sure what their preferences are. Either way, it really takes allies and a community speaking up and working with us to make sure we can exist everywhere, in any space, and that our lives are equal in economic opportunity and dignity.
Article about school exclusion: https://www.nytimes.com/2015/10/27/health/many-schools-failing-on-diabetes-care.html
Department of Justice on the exclusion of Type 1 diabetics in school: https://www.justice.gov/archives/opa/blog/protecting-rights-students-diabetes
Here is article about ableist language, though we could perhaps benefit from creating comprehensive HCI Guidelines, I defer to the experts in the crowd on that: https://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html
Thank you, Sara
On Wed, Mar 31, 2021 at 11:56 AM Franchesca Spektor <fspektor at andrew.cmu.edu<mailto:fspektor at andrew.cmu.edu>> wrote:
Sara, thank you for sharing this important perspective.
I apologize that I did not use the term “cyborg” with the care that it necessitates when introducing readings that take up controversial language. To respond to your message, I did some research on the ways “cyborg” has been used to describe people with disabilities. As you mentioned, the term has been used to reduce people with disabilities into the ways they are enabled by technology. These reductions, along with the term’s propensity in science fiction, feed stereotypes that technology may “fix” disability and that people with disabilities are subhuman, in particular, lacking warmth and human complexity.
For others, like me, who could use more education on the topic, here are some resources I found that nuance the potential harms and limitations of reclaiming cyborg terminology. Importantly, this discussion is complex and ongoing and some disabled activists have made clear that cyborg is not a term nondisabled people should use in reference to people with disabilities.
* Cyborgs, Cripples and iCrip: Reflections on the Contribution of Haraway to Disability Studies<https://link.springer.com/chapter/10.1057/9781137023001_6> by Donna Reeve talks about why the cyborg figure hasn't been more utilized in disability studies.
* The Cyborg and the Crip chapter in Feminist, Queer, Crip<https://books.google.com/books?hl=en&lr=&id=F4X6yaiCNOcC&oi=fnd&pg=PP2&dq=alison+kafer&ots=n8tOGO2UOe&sig=nA24II_goyKkeAvN1s3Okla_Va8#v=onepage&q=alison%20kafer&f=false> by Alison Kafer has this great quote in reaction to Donna Haraway’s Cyborg Manifesto: "The "cyborg" concept thus serves to perpetuate binaries of pure/impure, natural/unnatural, natural/technological; rather than breaking down boundaries, it buttresses them" (109).
* The intro of Building the Normal Body: Disability and the Techno-makeover<https://conservancy.umn.edu/handle/11299/125966> by Emily Smith Beitiks similarly breaks down how usage of "cyborg" has been traditionally ableist, from Haraway to Chris Hables Gray to John Hockenberry.
* The Dawn of the 'Tryborg'<https://www.nytimes.com/2016/11/30/opinion/the-dawn-of-the-tryborg.html> by Jillian Weise, where she argues only disabled people should call themselves cyborgs since only disabled people depend on integrated technology.
These different essays, perspectives, and bits of lineage are so important, and I hope we can continue discussing this nuance as a group. For instance, while Jillian Wiese uses a bionic leg and strongly identifies with the term cyborg, Laura Forlano, who uses an automatic insulin pump for type 1 diabetes does not. In both of their firsthand testimony, these authors detail the labor it requires to make their assistive technology work. I recognize that Zoltan Istvan’s controversial article is a troubling counterpoint to their perspectives, as it is 1) a blatant misunderstanding of the capacity of assistive tech, and 2) an insidious ideology that has influenced policy. In pairing it with Wiese and Forlano, I was hoping to draw out this historical tension between techno-solutionism and disability rights in our Thursday discussion. I apologize for not initially characterizing the harm perpetuated by Zoltan’s ideology -- especially as it concerns the term “cyborg.”
On Mon, Mar 29, 2021 at 4:06 PM Sara Kingsley <skingsle at cs.cmu.edu<mailto:skingsle at cs.cmu.edu>> wrote:
Hi everyone,
I request that we not refer to everyone living with medical assistive technology as a "cyborg." For many of us, it is extraordinarily derogatory, ableist, and those terms have been used by non-disabled people to harass and commit acts of violence against disabled people. I also ask that we consider reading about the history of diabetes technology, the broader community whose lives depend on it before engaging in a discussion of type 1 diabetes.
Thank you, Sara
On Mon, Mar 29, 2021 at 6:33 PM Franchesca Spektor <fspektor at andrew.cmu.edu<mailto:fspektor at andrew.cmu.edu>> wrote:
Hi everyone,
For this week's reading, we'll explore the cyborg as the supposed "pinnacle" of assistive technology. Can cyborg technology eliminate disability? Who can afford to become a cyborg? How do these questions come to influence products and policy?
These first two essays discuss the frictions of cyborg embodiment, from the lived experience of disability:
* "Common Cyborg"<https://granta.com/common-cyborg/> by Jillian Weise, a poet, performance artist, and activist. (I've shared this essay before but I just love it so much).
* "The Danger of Intimate Algorithms" by Laura Forlano, a scholar and design researcher.
If you have time for it, this last essay is a short Vice article from several years ago, which argues that the US should invest into exoskeletons rather than accessible environments.
* "In the Transhumanist Age, We Should be Repairing Disabilities, Not Sidewalks"<https://www.vice.com/en/article/4x3pdm/in-the-transhumanist-age-we-should-be-repairing-disabilities-not-sidewalks> by Zoltan Istvan, an attempted politician and president of the Transhumanist Party.
I'm really looking forward to our discussion and hearing everyone's thoughts!
As always, join us at Accessibility Lunch on Thursday, April 1st at 1:30 PM EST here. To access the meeting, please use this Zoom conference link: https://cmu.zoom.us/j/95170225799?pwd=UkhZWmwwUkp6M3BMR1dsM0taNjNnZz09
Thanks so much, and see y'all soon ~
- Franky
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--
Sara Kingsley
PhD student, Human-Computer Interaction Institute
School of Computer Science
Carnegie Mellon University
Pittsburgh, PA, USA
website: www.sarakingsley.info<http://www.sarakingsley.info>
Pronouns: she/her
Create Safe Spaces for Students, Denounce Ableist Language: https://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html
want to chat about research, projects or coursework?
please feel free to schedule time to meet with me at this link, thank you: https://calendly.com/sarakingsley/sara-schedule<https://calendly.com/sarakingsley/schedule>
--
Sara Kingsley
PhD student, Human-Computer Interaction Institute
School of Computer Science
Carnegie Mellon University
Pittsburgh, PA, USA
website: www.sarakingsley.info<http://www.sarakingsley.info>
Pronouns: she/her
want to chat about research, projects or coursework?
please feel free to schedule time to meet with me at this link, thank you: https://calendly.com/sarakingsley/sara-schedule<https://calendly.com/sarakingsley/schedule>
--
Sara Kingsley
PhD student, Human-Computer Interaction Institute
School of Computer Science
Carnegie Mellon University
Pittsburgh, PA, USA
website: www.sarakingsley.info<http://www.sarakingsley.info>
Pronouns: she/her
want to chat about research, projects or coursework?
please feel free to schedule time to meet with me at this link, thank you: https://calendly.com/sarakingsley/sara-schedule<https://calendly.com/sarakingsley/schedule>
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