[Access Lunch] Reading for this Week

Samantha Reig sreig at cs.cmu.edu
Wed Mar 31 19:57:06 EDT 2021 

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> 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> 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>
>
> _______________________________________________
> Accessibility-lunch mailing list
> Accessibility-lunch at lists.andrew.cmu.edu
> https://lists.andrew.cmu.edu/mailman/listinfo/accessibility-lunch
>
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