Demystifying Disability: What to Know, What to Say, and How to be an Ally by Emily Ladau
Summary
The introduction, chapter 1, and 2 of Demystifying Disability by Emily Ladau describe the diversity within disability and point to the roots of different language choices, highlighting that disability is a human experience in nature, discussing in what ways it creates identity and how it has found its way into metaphors and daily language, creating more stigma.
One Takeaway
Language has power. Etymology tells all sorts of interesting stories.
Disability is often taboo. Those on the outskirts fear asking questions, and therefore it doesn’t become normalised or understood. It being taboo or avoided in language creates a strangeness around the topic that does far less for the people it’s trying to protect.
Useful language includes disability community, used by the author with the disclaimer that it comes in all shapes and sizes. Handicapped is outdated and restrictive terminology - Accessible instead to refer to the physical realm. Identity-first language to bind a community in a helpful way (with capital A for Autistic person) and person-first language (”person with..” or “who has”). Referring to assistive equipment like something that enables a part of life that is otherwise dampened, as opposed to using language to focus on what is ‘missing’.
Connection to Real-world Example
In my own thinking, I often feel two forces at odds. I’d say I have bottom-up thinking, considering all the issues within a solution, often making sure to understand the system rather than launching into depth on one use case. But you can’t build for multiple people without first having built for one person. Capitalistic forces drive us to create one use case or persona to appeal to the masses.
Burning question
To put it simply: personalisation and how it can become part of what’s considered a sustainable business model. The core question, as I see it, is around what the features that describe a human? How do we codify these portions of identity? And what are some I’m not aware of?
Artificial Intelligence or a new ID card may have a role here - for example, if people carry a flash drive or an NFC tag with their preferences the same way they carry an ID. A digital credential that describes not demographics but how they perceive, how they move, how they process information. It would be more descriptive and effectively bring the invisible to the visible, and make intersectionality more digestible to data systems that will otherwise be making decisions for us whether people like it or not. It would allow systems to adapt to people rather than forcing people to adapt to systems. Personal history compounds, clusters and interacts in ways that can be described mathematically - it’s about building that data structure.
Once the data structure is there, it can be brought to the hardware level too, I’m excited to see how the AYAB or parametric systems offer solutions to this.