I never write threads. And so I hope my disabled friends and my supporters will take a moment to read this, as I am beginning to fall apart over things that keep happening. Advice and retweets would be much supported.
It started a year ago when @cooperhewitt asked me to consult on their Access + Ability exhibit. I jumped in without pause, as Disability Design is my passion.
In an early email I sought to "find incredible ways to incorporate the disability community, perhaps even create something the disability community can feel like they had a voice in."
I recommended many items that ultimately made it into the exhibition, I tried my best to correct their approach, but ultimately I wrote this in an email right before the exhibit opened (I was begging them to let disabled people write the descriptions)
"I fundamentally believe you fell short on disability representation. And that feels like my own failure, as I saw disability representation as my mission within your exhibit. But more than that, I feel the sting of loss. Loss of having a voice or at least thinking I had one."
When 'Access + Ability' rolled out, not one single disabled person was thanked, credited and I don't believe a single disabled person was paid as a consultant. More than that, no disabled people who designed were pointed out.
This unfortunately meant that when @kimmelman @aarieff @LangeAlexandra and other design critics wrote about it, nobody thought to interview a single disabled person. We were once mentioned in @nytimes @NewYorker and @SmithsonianMag - as suffering from disability.
I tried to push back, and found ultimately that @cooperhewitt was comfortable stealing my language, but without living the values. They used the word 'by' as in 'designed for and by disabled people' because I pushed them on that.
But how could they know 'by' was an important word? They failed to include us at every level. If 'by' was so important, why didn't they feature designs 'by' for design critics to take note of?
I tried telling the curator, Cara McCarty. She told me to be grateful she made time for me (multiple emails and 6 hour plus meetings in a periods of six months).
During the grand opening, @cooperhewitt did a 10 minute round of thanks, thanking even the sponsor I secured for them. But in all that time, they didn't thank a single disabled person.
To add insult to injury, they won't use the word disability. It's too stigmatizing. But disabled people believe we need to #SayTheWord because disability is no longer just a diagnosis, it's a community. With a culture.
Anyway a few months ago, I signed up for @NYCxDESIGN with a program called 'WITH' that I had created in response to what had happened to me at @cooperhewitt. Here's the link: nycxdesign.com/events/with/
Some time has passed and I've started to recover from the pain and the gas lighting of it all, and I finally decide I'm going to focus on giving credit. That's what this is all about, giving credit... to disabled people.
Anyway, today a friend sends me this link by @TheSineadBurke called "Sinead Burke Versus The Bell Curve" businessoffashion.com/articles/peopl…
Side note: Liz Depoy and Stephen Gilson are disabled and they're disability design theorists out of the University of Maine. One of their items is in the Cooper Hewitt exhibit, though nobody would know it because they were never featured as 'designing by'
Anyway, I have dedicated my career to championing the work of Liz and Steph, including their book Branding and Designing Disability, which is about... you guessed it, The Bell Curve. I have never spoken about their work without crediting them.
But it now seems that others are more comfortable doing so. And I feel guilty because Sinead's understanding of The Bell Curve comes through my championing of Liz and Steph.
So to @TheSineadBurke and to @cooperhewitt it's time to start giving credit where credit is due. These ideas are not your own and by poaching them for your own benefit, you are degrading the culture that's hoisting you up.
The end.
P.S. I have hives.
*Correction: @aarieff in her piece mentions "Maayan Ziv, a woman with muscular dystrophy, created a crowdsourcing app called AccessNow, which allows people to pin and rate places according to their accessibility (or lack thereof)." nytimes.com/2017/12/14/opi…
