[Access Lunch] Reading for this Week

Sara Kingsley skingsle at cs.cmu.edu
Wed Mar 31 13:27:53 EDT 2021 

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> 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> 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>
>> 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> 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
>>>>
>>>>
>>>> _______________________________________________
>>>> Accessibility-lunch mailing list
>>>> Accessibility-lunch at lists.andrew.cmu.edu
>>>> https://lists.andrew.cmu.edu/mailman/listinfo/accessibility-lunch
>>>>
>>>
>>>
>>> --
>>> *Sara Kingsley*
>>> PhD student, Human-Computer Interaction Institute
>>> School of Computer Science
>>> Carnegie Mellon University
>>> Pittsburgh, PA, USA
>>> website: 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
> 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
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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