Disabled Reality | Dr. Ashley Shew | TEDxBoulder

Here's a summary of the provided YouTube video transcript:

Key Concepts

• Technoableism: A term coined by the speaker, describing the pattern where ableism is reinforced in the way technologies are discussed and created.
• Ableism: Bias against disabled existence, often framed as a "trajectory of perfection."
• Disability as a lived experience: Emphasizing the expertise of disabled individuals in understanding their own needs and interactions with technology.
• The future is disabled: The idea that disability is an increasing reality due to various societal and environmental factors.

Summary

The speaker, who identifies as "heart of hearing, chemobrained, ampute with Crohn's disease and tinnitus," shares her perspective as a disabled philosopher of technology. She highlights the pervasive misconceptions surrounding disability and technology, particularly the concept of "technoableism."

Technoableism and the Reinforcement of Ableism

The core argument presented is that technoableism perpetuates ableism by framing disabled individuals as passive recipients of technological interventions designed to "redeem" or "fix" them. This narrative positions disabled people as consumers, unpleasant design subjects, or difficult users, always in need of help. The speaker counters this by emphasizing that disabled communities are actively helping themselves, repurposing, remixing, and creating their own solutions, a reality often overlooked.

Technoableism, according to the speaker, "writes over disabled community and creativity and accomplishment," relegating disabled people to a category of "misfit toys." The hype surrounding new technologies further erases disabled people, as most innovations fail commercially or socially, are expensive, difficult to maintain, and often never leave the design lab. The speaker criticizes the waste of time and resources spent pursuing technoableist solutions when the actual needs and desires of the disabled community are not adequately considered.

Misconceptions in Disability Research and Design

A significant point of contention is how disability is researched and understood. The speaker notes that people often turn to sources like the DSM or medical textbooks, which provide a skewed vision, rather than directly asking disabled individuals. This leads to systems built on biases, as exemplified by the work of Damen P. Williams. The speaker quotes Julian V. Visa, stating, "There's always someone inventing a new hell for us," which is evident in market-ready technologies.

Examples of Technoableist Failures:

• Continuous Glucose Monitors: Released without auditory readouts, despite blindness and visual impairment being common comorbidities of diabetes.
• Exoskeleton Projects: Marketed as wheelchair replacements, but often impractical for wheelchair users, potentially causing new issues like pressure sores.
• Hearing Devices: Despite over a century of development, new devices are still presented as cures for deafness, which they do not achieve.
• Abusive Behavioral Techniques: The continued use of electroshock devices on autistic youth in some institutions, despite advocacy efforts to de-list them from FDA approval.
• Workplace Accommodations: The burdensome paperwork, doctor's notes, and meetings required for minor modifications, which are often framed as a "failure" rather than a right.

Failures of Technology Outside the Disability Space

The speaker extends this critique to technologies not specifically designed for disabled people, such as AI proctoring services and job application portals that inadvertently screen out disabled individuals. Generative AI is also criticized for being trained on biased data scraped from medical practitioners, amplifying existing disability-related problems. The speaker uses the relatable example of not being able to buy a walker with pre-cut tennis balls as a simple illustration of how basic needs are overlooked.

The Expertise of Disabled Individuals

The speaker asserts that disabled people should be recognized as the "experts of the lived and embodied experience of disability and technology." They have navigated complex systems and possess nuanced observations that are often ignored. The media's portrayal of disabled people as inspirational figures or objects of pity is contrasted with the reality of their everyday lives. The speaker notes that disabled people are rarely depicted as "regular" in cultural narratives, leading non-disabled people to assume their sole goal is to become non-disabled.

The Inevitability of Disability: "The Future is Disabled"

The speaker strongly advocates for the idea that "the future is disabled," a concept she attributes to writers like Alice Wong and Leah Lakshmi Pepsna Samarasina. This is not just a philosophical stance but a practical reality driven by converging factors:

• Climate Change: Increasingly powerful weather events and environmental contamination.
• Cost of Energy: The high energy demands of technologies like AI data centers.
• Disease: The emergence of new diseases and the resurgence of older ones.
• Space Exploration: The physical and mental toll of space travel on the body.

These factors, combined with societal biases around physical and mental fitness, create a future that is more uncertain and disabling. The speaker criticizes design choices, such as houses with grand staircases or the lengthy wait times for wheelchair repair, as evidence of systems designed to make life harder for disabled individuals, a reality obscured by technoableism.

A Practical Dream for the Future

The speaker's "disabled dream" is practical: to become comfortable with disability as a category and a resource for planning and adapting to the coming future. She concludes with a powerful quote from Anita Cameron: "You erase us at your peril."