Sticky Notes of Thoughts

…because some thoughts are worth remembering

On Two Things: Merit, Not Pity (conversation with Alexandra Dean Grossi)

 

On Two Things is a Diversity & Inclusion (D&I) Project based on the premise that we are all affected by how society categorizes us, and as such, we have our own experiences to
share. I have asked people I know to distill their understanding of a particular aspect of D&I into two things.

Things are harder for Alex Dean Grossi but you wouldn’t necessary see that, because of her passion and focus. There was a certain graciousness about her when we first met years ago, requesting that the best way to communicate with her to meet up for dinner would be via text messaging. My friend had told me that his new girlfriend was deaf, but my first reaction wasn’t “of course!” but rather, her ease in stating her communication preference disarmed me from the kind of mental exercise you go through in planning a menu when you host carnivorous, vegan, and soy allergy guests for an event. I noticed that she had strategized where she sat at the restaurant so she could read my lips, only after she had to gently remind me that I should face her for her to be able to “hear” me when we went for a walk after and I continued to talk while we crossed a narrow path in single file.

Her Lens

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 other communities with include writing and film, and a new obsession with fountain pens (yes, thanks to the Internet, there is apparently a whole world of fountain pen enthusiasts).

Her Two Things

2 THINGS ON INCLUSION OF PEOPLE WITH PHYSICAL DISABILITY

  1. Learn the language and identity of the individuals
  2. Don’t pity them: hire them!

Discussion
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 Alexandra Dean Grossivisually 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.

What’s Next?
Alex’s personal mission as a designer is to get more people with disabilities working in designs that impact them. She said that “because of the huge disparity in education among people with disabilities, sometimes PWD are written off.” while she feels like there is a trend to design for disability, most people who are the voice for PWD are still abled people. “There’s a lot of talk about ’empathy’ but it can only get you so far,” she said: nothing can replace first hand experience. When the diversity of product designers does not reflect that of the consumers, we must raise the “lack of representation” red flag. Having worked briefly in Hollywood, actors playing PWDs does not sit well with her.
She’s established a Facebook Page called “Inclusive Deaf Community” to mend the gap within the deaf community, between ASL users and verbal folks, which have led to in-fighting. Alex hopes the Page will serve as : as a safe haven to try and foster communication between those who sign and those who don’t,” because she believes that the PWD communities must keep the larger vision in mind rather than treating their challenges as a zero-sum game.
“I feel like as a more ‘assimilated’ deaf person I am sort of in the position to ‘help’ PWD,
but I recognize that the system is what needs changing. I’m trying from a few different, very microcosm levels: 1) to be a position of “power”; 2) to show deaf people we can all be friends because, we all have the same issues; and 3) to get all of us PWDs up the ladder in a visible way”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Information

This entry was posted on February 12, 2019 by in Uncategorized.
Follow Sticky Notes of Thoughts on WordPress.com
%d bloggers like this: