Don't Look Down on Me

August 13, 2014 3:09 PM

Jonathan Novick gives us a bit of his background and shows us a day in his life as an achondroplastic dwarf living in New York City.
posted by gman (23 comments total)

Going to Times Square is kind of stacking the deck, isn't it?
posted by mr_roboto at 3:27 PM on August 13, 2014 [4 favorites]

Man, that was really terrific and horrifying at the same time. That's the kind of treatment he gets EVERY DAY walking around NYC? That's totally nuts, and I could see how it quickly would be demoralizing to have to endure every time you go out. Christ, people can be dicks.
posted by mathowie at 3:35 PM on August 13, 2014 [1 favorite]

Oh gosh, the guy who thought he was Zach Roloff from 'Little People' --- because all dwarfs look the same? Because they're all actors, never a lawyer or accountant or sales clerk? Whatever the reason, that just felt icky.
posted by easily confused at 3:40 PM on August 13, 2014

"Do you see a lot of little people?"
"Man, I'm from Oklahoma."

Thanks for posting this. I hate that anyone has to put up with any sort of shit like this, ever.
posted by scody at 3:50 PM on August 13, 2014 [2 favorites]

I really liked that piece of advice at the end: What part of someone's day do you want to be? Good advice for dealing with anyone, not just people who are different.
posted by If only I had a penguin... at 3:51 PM on August 13, 2014 [18 favorites]

Wow, completely shocking. I have heard folks who look different talk about getting looks/stares but hadn't realized they also copped full-on daily harassment.

Great post, thanks.
posted by dontjumplarry at 4:05 PM on August 13, 2014

I wonder how this stacks up against an attractive woman's day in terms of objectification and harassment.

It was also satisfying that the rudest person he encountered in New York City was from Oklahoma.
posted by milarepa at 4:10 PM on August 13, 2014 [2 favorites]

Would love to follow the people around who were asshat enough to take pics of this dude on the sly, and do the same to them.

I'd love to get Improv Everywhere in on that shit - find some cromag and have like, 100 people all take surreptitious photos of that person throughout an entire day.
posted by Lipstick Thespian at 4:13 PM on August 13, 2014

It was also satisfying that the rudest person he encountered in New York City was from Oklahoma.

I don't know, I thought the (seemingly native) New Yorker yelling about his penis size was pretty awful.
posted by scody at 4:18 PM on August 13, 2014 [1 favorite]

I have encountered every one of those scenarios as a foreigner living in Japan, but only once in a while (once every few months). He probably gets bothered multiple times every day!
posted by Nevin at 4:21 PM on August 13, 2014

Excellent example of the ridiculous things people will say if you're visibly different. I was most impressed by his take home message, What part of someone's day do you want to be? How can one obtain that serenity so young?

Speaking of which I adored the video from his youth when he seemed completely blissed and free, sliding into his fathers' warm regard.
posted by Jesse the K at 4:28 PM on August 13, 2014 [1 favorite]

Would love to follow the people around who were asshat enough to take pics of this dude on the sly, and do the same to them.

I read an interview with Peter Dinklage where he was talking about life as a celebrity in NYC, and it was that exactly that really bothered him, being photographed by people who thought they were being sly. I can see you, he said; I'm right there. I can't imagine this is something people did before we all had digital cameras. Let's all try to have better manners!
posted by ThePinkSuperhero at 4:29 PM on August 13, 2014

This was welcome and I enjoyed but I gotta say I expected much worse.

I also appreciated the reference to his smalltown upbringing. An acquaintance with a (relatively minor) facial deformity — who was also gay and out for years — told a similar story. Everyone in his tiny midwest town just kind of accepted that he looked weird and liked boys, it wasn't until he moved to a (progressive! west coast!) city that people kind of dumped on him for it.

But the end bit is brilliant, maybe my new life motto:

The next time you see someone who is different than you, think about what their day might be like…what part of their day do you want to be?

Nevin: I have encountered every one of those scenarios as a foreigner living in Japan, but only once in a while (once every few months)

I got it many times every day living in (relatively backwater) China, but it was more tiresome than demeaning. Staring, pointing, photos, insensitive questions, people snatching things out of my hands to inspect, etc. Maybe like being a celebrity?
posted by axoplasm at 4:31 PM on August 13, 2014 [3 favorites]

Would love to follow the people around who were asshat enough to take pics of this dude on the sly, and do the same to them.

This is exactly what he is doing in this video though, taking clandestine images of people photographing him. Which is interesting.
posted by salishsea at 4:32 PM on August 13, 2014 [1 favorite]

I can't imagine this is something people did before we all had digital cameras.

Street photography has existed since there were cameras that didn't require a giant tripod, and one of my favorite cameras is this, which is actually slightly smaller in the hand than my iphone 5.

Basically, don't hate the game, hate the player. There's no way this hasn't been going on since at least like, the 30s. People are the problem, not the tech.
posted by emptythought at 4:47 PM on August 13, 2014

but it was more tiresome than demeaning.

Yeah, you nailed it.

My experience has been (but not so much anymore) like that chucklehead from Oklahoma - people just sort of sit down and start asking me stupid questions. Sometimes people (usually drunken men or junior high school students) will try to grab my balls, though.
posted by Nevin at 4:56 PM on August 13, 2014 [1 favorite]

Nevin: if I understand what you're saying, you have dwarfism and are a foreigner living in Japan. How does your experience walking down the street in Japan compare to your native country?
posted by The corpse in the library at 6:05 PM on August 13, 2014

Salishea, he's doing this once, in response to behaviours he experiences directed privately at him in public daily for years, and he's doing it for a project that will be public and with context. Pretty significant difference.
posted by viggorlijah at 6:31 PM on August 13, 2014

I understand that. I like his project. It's important. It's a context I think is important enough to catch a few people stealthily photographing him.

But what are the other people doing? We don't know. We don't even actually know if they are actually taking a picture of him. Or if they are walking around New York taking photos of people with dwarfism just getting along with their regular lives, because for all intents and purposes, that is what he appears to be doing. And what about all the other people, like the kids doing a double take? None of them were aware of the project or the context...he could just be walking around with a hidden camera getting his jollies. Imagine the shock if he revealed that he'd been been filing them all along without consent. I imagine some parents might be a bit taken aback to see their kids in this.

I'm just saying it's interesting, that's all.
posted by salishsea at 7:22 PM on August 13, 2014

Note that many causes of dwarfism involve degenerative skeletal dysplasias.

I have in mind spondyloepiphyseal dysplasia congenita, which causes dwarfism, and which by some diagnosis I suffer from, as I have a COL2A1 mutation. The congenital condition in my family is at another location (Arg to Cys at 519) on the COL2A1 gene than what is usually understood as SED †, and so it's in some ways both distinct and less severe -- there's some mild shortness of stature (when the other adults in my dad's family are generally taller than average) and less severe developmental dysplasia.

But many of these dysplasias involve, as I mentioned, pretty severe joint degenerative disease -- that is, osteoarthritis -- that presents as quickly as early childhood and progresses toward very severe degradation at various rates. My sister, for example, had both her hips replaced when she was in her twenties and both of us, and our father, had numerous corrective surgeries during our childhood.

The point is that many people suffering from dwarfism aren't "merely" short of stature, they're also suffering from severe, disabling skeletal diseases. This is true even when it's not a collagenopathy, like SED, but because abnormal skeletal development, especially involving the load-bearing joints and the spine, will result in a wide variety of maladies, from joint degradation to spinal problems to muscular problems. And other things which I undoubtedly am not familiar with.

So someone you might meet or see on the street with dwarfism not only has to deal with people explicitly singling them out as unusual and offering inappropriate, alienating comments, but there's a pretty good chance that they are suffering considerable pain and mobility problems, as well as in some cases breathing issues and other disabilities. They live in a world that not only is designed around the assumption that most every adult is at least five feet tall, but also one that assumes various daily activities unrelated to stature are easily available to them.

If, for example, you're a white person who has some intuitive understanding about what would be inappropriate in saying, "Hey, I notice you're a black person, can I get a picture with you?" then maybe you can get your head around the idea that treating anyone as freakishly notable, as an opportunity for your own idle amusement or scrutiny or even well-meaning curiosity is deeply hurtful because it's pretty much an aggressive display of lacking empathy. Likewise, pretending that people who are uncomfortably different simply don't exist, just looking right past them in a way you don't do with others, is also Not Okay.

Growing up, when visiting doctors and in the children's orthopedic hospital, I was around a lot of kids with SED. And for that matter, kids with severe scoliosis or missing limbs or paralysis or other severe and obvious illnesses. And despite the pain and the surgeries, I always felt fortunate in that I wasn't additionally subjected to being an object of scrutiny, of amusement, of averted gazes or intensely inappropriate curiosity or ostentatious pity. Having a lifelong illness is bad enough, that people feel entitled to see you as a spectacle is adding insult to injury. And the worst insult is the implicit lack of empathy, of a failure to see that there's a person there, that they're not essentially a disease or a deformation.

You'd think that only the very worst people would behave that way, but that's not really true. Only the very worst behave in that way in the most obviously egregiously offensive manner. Huge numbers of other people do so in ways that are less subtle, but no less hurtful because of the ubiquity and apparent social acceptability of the milder varieties.

† My sister and I have a disagreement about describing our illness as SED, as her opinion is that it's the nearest-to-accurate box that can be checkmarked and will more reliably lead our physicians to appropriate treatment rather than underestimating its severity and scope; while I'm more a stickler for identifying the exact mutation and providing a list of citations for my (new) physicians to consult because my fear is that labeling it as SED is just trading one misdiagnosis for another (before the mutation was identified, in our family history there have been some amazingly inappropriate diagnoses by various doctors). Such is what it's like living with an extremely rare disease.
posted by Ivan Fyodorovich at 7:25 PM on August 13, 2014 [17 favorites]

Excellent example of the ridiculous things people will say if you're visibly different.

Well, for one year. When he moved away from his small suburb to the city.

Especially if it's a diverse suburb, as mine was growing up (Navy town with non-European immigrant communities, Philippino cotillions are something, let me tell you), you get used to people in one hell of a hurry. Point out someone who's unusual, and the person you're pointing them out to will likely go, "Dude, that's just Mikey, he's in special ed, and he's super nice. My sister plays with his all the time," and then you'll feel like an asshole idiot.

Cities offer anonymity - it promotes tribalism rather than defusing it. You know your people, and other people are just background noise, or worse, playthings or marvels or dangers.

I mean, in some cases small-town provincialism leads to marginalization, or worse, a free-pass for abhorrent behavior if you're in the right sort of crowd (Stuebensville, anyone?) and white flight is abso-fucking-lutely a thing - but the former is a horrible exception to the rule, and the latter doesn't apply to ableism.

I've actually had the "It's just Mikey" conversation with someone, and Mikey was indeed exceptionally nice and not particularly noteworthy to me. I've also been in Harvard Square where a 7'+ South Asian woman was about to cry as people were following her just to stare and take pictures. I turned and stared and followed a bit, until I realized everyone around me was as well... I knocked that bullshit off and felt bad. I'd wager most of the few hundred others doing the same thing in the same time and place didn't.

No one was around to say, "That's just Mikey" for those hounding her to absorb and accept that's how she was, no big deal. There can't be in a city of any size.

One of the many reasons I'm not a fan of city life.
posted by Slap*Happy at 7:34 PM on August 13, 2014 [1 favorite]

but the former is a horrible exception to the rule

That's not been my experience of small towns. I've enjoyed a lot of things about living in small towns, but my experience with them, and in cities, are pretty much the opposite of yours. You can stay in your tribe in a city, but it's not required and it's pretty easy to snap out of and you probably don't even have to drive anywhere to find not-your-tribe people.
posted by rtha at 8:57 PM on August 13, 2014

"One of the many reasons I'm not a fan of city life."

I grew up in a small town and so I totally agree with your point that smaller communities will often be more tolerant of some kinds of difference, rather than less. But it's hit-or-miss and so I strongly think that generalizing that one is better than the other is a mistake.

I experienced basically no teasing about my illness growing up while, in contrast, my sister was teased. I've thought mostly that it was because she's female and the disease is worse for her, but given your comment it occurs to me that the fact that I grew up in a small town of 12,000 people and she grew up in a small city of 270,000 is also relevant.

From when I missed much of fifth grade because of my surgery onward, all the people I grew up with knew about my illness. It wasn't a big deal, it wasn't even talked about, except very occasionally when it was directly relevant.

The actor Ronny Cox is from my town, and it's small enough that everyone knew him. But his brother is disabled and got around town in a gas-powered wheelchair. I mean, a gas-powered wheelchair going down the street at thirty miles per hour is a bit notable, but it was still, you know, just one of our own, doing the thing he does. And, yeah, small towns are like that.

But I wouldn't have wanted to be gay and out of the closet in that town. In fact, there are a whole hell of a lot of things I despise about that town and the last way I'd describe it would be "tolerant". It wasn't. It's not.

Being visibly part of a community is a double-edged sword, which is apparent when that community decides to ostracize or otherwise punish you.

And the thing is, the real bottom-line reality of what you're trying to argue, is that the only reason that what you say is true is true, is because people everywhere tend to be accepting of the people they know and recognize who are not part of the dominant group while nevertheless being very bigoted against members of those other groups elsewhere. That small-town folk can be very accepting of difference is merely a fact of human nature, people everywhere are accepting of difference when they have enough contact to see someone as human. It's no special virtue, and people in large cities form neighborhoods and do the same thing. And both groups will be just as hatefully bigoted when they haven't been forced by circumstance to recognize someone's essential humanity.
posted by Ivan Fyodorovich at 9:00 PM on August 13, 2014 [9 favorites]