Monthly Archives: May 2016

Invisible Disabilities: Standing Up for What Can’t Be Seen


Debbie says:

[Laurie and I will be spending the next week at WisCon 40 in Madison. We’ll be back in June.]


May is Ehlers-Danlos Syndrome (EDS) Awareness month.  Until now, I’ve been only vaguely aware of Ehlers-Danlos, maybe a little more familiar with the word “hypermobility,” which I now know is a type of EDS. However, aforalpha’s open letter to the women who gave up their seats on the bus, guest post on Shakesville, will be carved into my memory for a long time:

Yes, at the time I thanked you for the seat.

But see, because you stood up, I was able to work a full day. I was able to sit in a conference room. Give a presentation.

Because you stood, I didn’t have to hold the grab bar. And when I arrived at class, I still had enough hand and wrist strength left to unzip my own coat.

Because you stood, I was able to run errands this evening. I was able to stop by the pharmacy, finally. Tonight I will take my anti-nausea meds for the first time in several days and I will sleep without a bucket beside my bed. …

Every time I don’t need to stand on the bus it saves me that little bit of wear and tear. You wouldn’t think it would matter, but I once spent an extremely tedious and painful occupational therapy session relearning how to press the buttons on the microwave. Everything matters.

aforalpha goes on to describe EDS, a disease with a vast range of presentations, and more about how it affects them personally.

Along with teaching me more about EDS, and helping me put a personal face on the syndrome, the post made me think about seats on public transit, which are a factor in my everyday life.

Since my hair turned gray about four years ago, people routinely offer me seats on the BART and the bus. I don’t need them. I not only don’t need them the way aforalpha needs them (desperately), I don’t even need them mildly. I like having a seat. I’m more comfortable, and I get more reading done. But it doesn’t make an iota of difference to how my day goes. I suspect almost everyone likes having a seat.

I often say no, but sometimes, if the person is insistent, or my feet are tired, or the train car/bus is super-crowded, I say yes. If someone asks for a seat, as aforalpha did, I’m always ready to give mine up. I just hope that the people who need seats in invisible ways are asking. aforalpha, and anyone else who needs it, my seat is yours if you want it. And when I get to the point where I do need a seat, your courage will help me ask.

What Would You Do? Tell Them to Go to Hell, I Hope


Debbie says:


Tom Cush was catfished by ABC’s What Would You Do?, a show its network describes as a “journalistic endeavor.”

Not being an online dater myself, I had to look up “catfished” in Urban Dictionary, which defines the term as “being deceived over facebook as the deceiver professed their romantic feelings to his/her victim, but isn’t who they say they are.”

That both is and isn’t what happened to Cush. What Would You Do? sounds like a cross between Candid Camera, a show from my younger days, where people were put in implausible or embarrassing situations and caught on camera, and sleazy contemporary “issues journalism.” ABC says the show (on network since 2008)

establishes everyday scenarios and then captures people’s reactions. Whether people are compelled to act or mind their own business, John  Quiñones reports on their split-second and often surprising decision-making process.

Note, because it will be important later, that the show is about the reactions of people seeing these “everyday scenarios,” and not about the people in them. The implication is that the people in the scenarios are actors. Not so, at least not this time.

Cush is a little person, i.e., as he says, he was born with dwarfism. He uses online dating sites to find “average-sized” women who are comfortable dating him. He sounds frank, open, and honest in his approach to the women he meets online.

Unfortunately, “Jess” was not frank, open, nor honest. Using a false photograph, she put a lot of pressure on Cush to meet her at a specific place at a specific time, and wouldn’t take no for an answer. When he got to the pre-arranged meeting, the woman there was not the person he had seen online.

I realized that I would have to be the one to address the very obvious cause for the awkwardness between us. Jess was not the woman pictured in her Bumble profile, and I said so. As she laughed nervously, she suggested that the photos of her were merely dated.

“The pictures I have on there are old,” she said apologetically. “I look a little different now.” Blown away by the suggestion that I simply had not recognized her, I pulled out my phone and brought up her profile page.

“I’m sorry, can we just forget about it?” she asked, the embarrassment of her lie now clear in her voice. “Let’s just forget about it. What do you want to drink?” But I wasn’t having it—it was too uncomfortable to me to pretend like I hadn’t been purposefully deceived, and I said as much.

After a pause, thick with the tension between us, I took some of the hostility out of my voice. “Look, humor is really important to me, and you’re funny,” I told her. “Be honest next time, and you will find you the right guy. It’s not me.” I told her I was going to leave and got up from the table.

That’s when the cameras came out. 

The situation brought Cush into a panic attack. To his enormous credit, refused to sign their releases, despite substantial pressure. (“Jess suggested that if I didn’t feel comfortable, I should sign the release form anyway, and could tell them I ‘changed my mind’ after the fact.”)

Do I need to say that no one should ever tell someone to sign something before they’re sure and maybe back out later? If I had a shred of respect left for the people involved in this incident, that would have made it disappear.

Cush writes very cogently about the show’s blurring of bystander/participant/protagonist roles, the ways in which the show tries to trap people, and more. But he doesn’t address one aspect I thought was important:

This story would be horrifying if Cush was not a little person. It would also be very familiar, except that generally the person in Cush’s role would be female and the person in Jess’s role would be male (and the TV cameras would likely not be a factor). One thing Cush’s account reveals is that the producers and paid participants were attempting to feminize and trivialize a non-normative man. There wouldn’t be anything inherently wrong with feminizing someone … except when “feminizing” means playing on their insecurities and vulnerabilities, and attempting to remove their agency.

They assumed (at least somewhat accurately) that because he is a little person, and because he’s looking to date women who might stereotypically be uninterested, they could lure him with aggressive responses, and get themselves good footage. They took advantage of his vulnerability, and it’s only by luck and Cush’s good judgment under extreme stress that they didn’t get someone vulnerable enough to fall all the way into their trap.

Almost certainly, they were also banking on extra humor value from how he looks; they had the opportunity to take advantage of stereotyped expectations around an average-sized woman and a little man. The camera angles would have been designed to accentuate those differences. Again, there’s no inherent reason that a dating encounter between a man who is maybe 4’10” or so and a woman who is maybe 5’7″ or so is funny, unless cameras, commentary, and pre-existing stereotypes are used to pull laughs out of people accustomed to the casual cruelty of contemporary television. Have you watched America’s Funniest Home Videos recently?

So my question for John Quiñones and the staff of the show is “What would you do if someone called you out as the tricksters, cheaters, and hypocrites that you are?” Would you admit it? Would you do it on camera?