…because some thoughts are worth remembering
Fast forward to the present, her most predominant lens is that of feminism, not about if she experiences sounds differently: “I’m a feminist and a die hard liberal so I tend to form friendships around these values.”
By day, she is a software designer at IBM on a product that helps clients take older apps and “modernizes” them for operating from “the cloud”. Alex works with UX designers to design the user interface for developers to implement.
Her Two Things
2 THINGS ON INCLUSION OF PEOPLE WITH PHYSICAL DISABILITY
Alex knows first hand what it is like to live in a world where things weren’t designed with her needs in mind. She also knows what it’s like to have a blindspot and work deliberately to be mindful of needs other than her own. A project she has been involved with since she graduated from grad school in 2017 is called IDATA, a grant based project geared at making astronomy and astronomy software accessible to blind and visually impaired (BVI). Alex is the User Centered Design expert on the project and she works with BVI students to make the software they are creating as accessible for BVI users. Alex quickly realized that what helped her as a deaf user wasn’t going to be useful in designing for BVI users. As with our previous expert, Sarah Burvill, she echoes the importance of treating people with disability from a place of understanding rather than pity, because after all, we built the society optimized for certain types of people and excluded the needs of others: their predicament is not their fault, but the society’s failing, or oversight at best. Take the time to learn what they would like to be called, and don’t assume that the disability is their main identity. Alex, for example, doesn’t necessarily mention her deafness up front. Because of the surgeries she’s had to augment her hearing, she is considered hard of hearing. When she speaks, most assume she has a foreign accent. Because she was brought up to read lips rather than sign, she doesn’t share the same type of upbringing that other deaf students with signing abilities have had. When referring to a group, she’ll use the term deaf and hard of hearing (DHH), to cover both grounds. The catchall term she uses currently is persons with disabilities (PWD).
Knowing the labels and language to engage with PWD should at least get you started off in a productive conversation. Alex’s “go to” tool is humor. Her quick wit is well suited for puns, and she liberally sprinkles them through out conversations. She and others with disabilities often find humor disarms people. She relishes the reactions of others: people don’t expect her to be cracking bad jokes and the surprise can snap people into considering our sameness rather than our differences.
One note on sameness: When people come up to her, many of them will tell her that they took American Sign Language (ASL) in college (and subsequently, are devoted when they find out she doesn’t sign), or that they sort of lost hearing temporarily after a concert, or that they have a relative who is deaf. Even with their best intentions to first establish common grounds, this opening attempt confirms that they first see her as DHH. While it is a big part of her identity, it may not have been most relevant to the interaction. I’ve been on the receiving end of “Oh, are you Japanese? I love sushi” at an introductory business meeting; and shamefully, been on the giving end, I’m sure. When the common ground features a disability, Alex warns, she gets “wary of being extolled as ‘inspirational’ based on nothing but the fact that I’m deaf.”
Being mindful and holding space for others, regardless of who they are… with or without disability, faith, gender or race, means that we are receptive to cues the other party presents, and we jibe off of that as the common ground to start, rather than what you first categorized them as, “Because society should realize that it’s not our disability that makes life challenging, it’s the fact that the world was not designed with us in mind”
Alex’s other big role is that she serves on the local chapter of AIGA, a professional association for design. She is the “Director of Inclusive Design” which is a role that she designed specifically for the chapter. To their knowledge, no other chapter has such a role yet. From her day job and with her responsibilities at AIGA, she recognizes that one of the ways to make the world better is through inclusive design. There is a limit to anticipate the needs of others. To that end, she believes strongly that companies should be hiring more PWDs. It does two things: PWDs can implement their own solutions to making their lives better; and they are improving the world by incorporating their needs, because inclusive design isn’t just good for the initially targeted audience. A great example of that is the slopes that are built-in at various portions of sidewalks for easier wheel chair access. It was indeed implemented for use by wheel chair drivers, but we have all appreciated them when pushing a baby carriage or rolling a suit case. Learn history of how a devoted group of folks in Berkeley, California, petitioned for curb cuts on 99% Invisible podcast.