Tuesday, April 30, 2013

Blogging Against Disablism Day 2013: Noli Me Tangere

This blog post written for Blogging Against Disablism Day, May 1.  See Diary of a Goldfish for some great writing; more will be added throughout May 1.  You can also check out previous BADD entries in her archives.

"Noli me tangere": the words mean "don't touch me." While the phrase has a religious history to it, I wish here to discuss the disabled body and public space, the ways our bodies may enter a space and seemingly invite touching or conversely, intrude upon the sacredness of public space.  In the un-nuanced public eye, our bodies are both sacred and profane.  We are untouchables yet enlightened sages.  We experience others' fear of contamination or contagion; on occasion we are reviled or cursed at or forced to leave.  Our British friends, in the midst of contentious public disability reforms, are physically and verbally attacked in public thanks to news media depicting them as scroungers.  In the U. S., some are killed over whose space it is and who belongs in it--recently, Robert Saylor, by security guards; others are almost daily prevented from entering specific spaces because of their service dogs, even this week.  While some able-bodied people look to us to dispense wisdom or inspiration, in the midst of daily navigations and negotiations of public space, we may have none.  Rarely may we just blend in.

In March, our family was banned from an art museum, first because of our service dog, then because of my power wheelchair.  We were forced to leave the museum, and at one point, I thought one of the security guards was going to knock me out of my chair.  Another wheelchair user thought he was going to hit her.  She was also forced to leave.  We were both bullied, shouted at, and shamed in front of a large crowd of families.  While it would never surprise me to be banned because of my service dog, though the ADA and state law both protect me, it did surprise me to be banned because of my wheelchair.  I felt stunned.

Really, I had no idea what being excluded like that feels like.  I expected to feel perhaps inner outrage in that kind of situation along with a stubborn American "fix it" attitude.  I did not expect to feel humiliated or less than.  But I did, for weeks.  When I'm in public, I now feel acutely different from others--it's a feeling, not a decision, and I wish I could overcome it.  I feel vulnerable and afraid and anxious, that the people who should protect me and include me won't.  After all, I was in a museum that prides itself on its accessibility.  This was no mistake. It was a new policy, and it was emailed to the security firm.

Certainly, the other wheelchair user and I worked immediately to effect change--and a number of disability scholars and activists came to my aid.  So did the NEA and the museum's corporate sponsors, as well as friends.  But how many more were affected in the six weeks prior?  And since the demands come from a museum curator in Los Angeles, how many other people has she excluded at various museums?

There are class issues at stake as well.  The museum curator sees wheelchair users as the great unwashed--homeless, careless vagrants, probably dirty, who cannot value priceless art, art that matters more than they.  She would rather exclude an Alison Lapper or a Sue Austin or a Frida Kahlo than have her art broken into shards by careless, gleeful power wheelchair users.  Should Stephen Hawking, who does still travel, visit a museum while her exhibit is there? Not good enough.  After all, it is now hers, not the public's since the public includes disabled people.  Public spaces become narrowed to private spaces, to sacred space unsullied by our kind.  While there are a lot of homeless people and poor people with wheelchairs, especially near downtown, certainly they weren't going to be allowed in.

We need to realize how easily people slip into the Nuremberg defense when it comes to disability--"I was only obeying my superiors."  Security guards and police officers, medical professionals, administrators.  Just as with racial segregation, they can physically harm you or exclude you because they are told to do it.  And our bodies are particularly vulnerable to harm.  I had real reason to worry--the security guard pressed himself into my husband's body aggressively and simply could not get to me because of my service dog, my husband, and the glass stairwell next to me (which he was pushing me into).  It never occurred to him or the other three security guards to question what they were told, nor the administrators I talked to immediately after.  And they were willing to do this in front of children, my own and others'.

People touch us, our equipment, or our dogs just because they can, because, as with pregnant women, our bodies are seen as public property.  Those of us using wheelchairs often experience damage to them from others, unnecessarily.  Those with osteogenesis imperfecta whose bones break easily, those who have autism or a developmental disorder, those who have been harmed or raped before, those who have medical procedure after medical procedure, those who like more space than others, may not want to be touched.  Our bodies are our own.  The police saw it as so important to touch Robert Saylor, to prevent him from continuing to occupy a movie theater, that they killed him, even as his caregiver pleaded for a different way.

To that I say, noli me tangere.


The Goldfish said...

This is an excellent post, Frida, thank you. I'm so sorry that this happened to you, and understand exactly why it is taking so long to recover from. I hope you continue to recover and never experience anything else like this again.

Ruth said...

This is a great post on so many levels. Glad you're sharing your experiences, and your analysis is spot on.

Never That Easy said...

Your experience at that museum is frightening and so frustrating! I'm sorry that happened to you, and understand why you feel so vulnerable, for sure. As a person who has allodynia - where even the lightest touch can cause pain - related to my fibromyalgia, it's something I'm constantly afraid of, in public spaces, people do not respect my private space, and it's always something of a gamble, and something I have to be on guard against, whenever I am out. Thanks for introducing me to another useful phrase: Noli Me Tangere, dammit!