SAY WHAT but also WHEN: Thinking about context, language and disability

Hi everyone,

I think it’s interesting Jo published a blog on “words that make her barf” because, I recently read two online articles that made me consider that exact same thing.  The first one was “A Letter To the Guy Who Harassed Me Outside the Bar ” (http://www.rolereboot.org/culture-and-politics/details/2012-12-a-letter-to-the-guy-who-harrassed-me-outside-the-bar) by Emily Heist Moss. The second “How to Talk to a Normal: A guide for the rest of us” (http://www.disabilityandrepresentation.com/2013/01/28/how-to-talk-to-normal-people-a-guide-for-the-rest-of-us/) by Rachel Cohen-Rottenberg. Both articles made me think of many things but, specifically the experience of being approached by strangers on the street. I was then further motivated to write my thoughts down because I thought it would make a fantastic addendum to Jo’s post on words.

Heist Moss’s article is really well written. She brings up several really astute points about: ”Rape Culture” within western society. She is also able to bring to light how we as a society have normalized the objectification and public humiliation of women so much so that it is ubiquitous within western culture. Heist Moss gives space to a really important discussion of the social position of women and gender relations. I don’t wish to take away from that. Further, at some point I would like to complicate the discussion by thinking about what it means to gain the public attention of men (or lack thereof) as a woman with a visible disability. However, the point Heist Moss made that really struck me was her discussion that the “catcalling” is ongoing and so frequent that it has no novelty. Further, she is able to connect the harassment to the notion that the women receiving the taunt do not know the true intentions of the men and thus must prepare for the worst. She contends the harassment is not just the work or a few rude individuals by rather the manifestation of a cultural zeitgeist.   It was this point that made think “that’s my issue with ongoing questions and comments from strangers about my disability”.  I am greatful to Heist Moss for finally making this manifest to me. I have literally spent years trying to pin point why sometimes I like to answer questions and sometimes I don’t.   

Here it is: Much like Heist Moss writes in her article the guy who harassed her outside the bar is one of many men (that week) who have harassed her. This interaction for her is on-going and irritating. This is my experience with intrusive questions and comments. For example: Many people are surprised I can drive (I am very grateful I can drive and recognize many people disabled or not can’t), however on any given day 3 or 4 people will stop me to inquire: how I drive? To say it’s really great I can, or tell a story about someone they know who is disabled…etc… My irritation with this is two-fold: the first much like Heist Moss’ experience with men harassing her, people stop to ask me about driving all the time. So unfortunately if you are the millionth person I am going to be annoyed. Further, I find when I am annoyed this is then interpreted as “people with disabilities don’t like to talk about their disabilities ever…so just don’t”. I find it interesting that in my experience there is not a lot of thought given to the context of this situation. As it’s my blog I am going to point out the difference that context makes. Yes, I get asked lots of questions about my disability and yes sometimes it is annoying. However, if we are friends and you have a question that is very different than someone interrupting my shopping to ask how I pee. If I want to participate in something and we need to think of how to adapt it? It makes sense that you would need to know what my disability is and what I can do. If knowing about my disability helps you support me to do something, or brings us closer together it makes sense.  However, if you don’t know my first name it is weird that you want to know about my body. If I am doing something that you would not normally talk during (peeing, changing, having a conversation with someone else, eating dinner in a public place not with you and you have to walk across the room to speak with me) this is not an appropriate time or place for you to ask. Further if you are simply inquiring for your own information this is annoying. This is annoying because it usually happens when I am running late or trying to do something.   

To make my point clear here  are two examples. I recently took a cardio boxing class. The class is designed for people who can walk, run and jump. The instructor is also a spinning instructor whose class I take. We are friendly and she knows me. When I approached her about taking the boxing class, she said she would need to know more about my “situation” and then apologized because she didn’t know the right word. I said “situation” seemed like a good enough word and went on to explain my experience of disability so we could think about adapting the class. While I appreciate her tact in broaching the subject of my disability, I didn’t mind answering her questions because, we know each other and there was relevant context. Alternatively, I recently had someone randomly ask me if I live with a helper, and who pays my rent? I have never met this person. I assume they live in my apartment but, really don’t know. I was rude to this person because it is none of their business how I live or who pays my rent. Further, I am annoyed at this person’s query because it implies again that disability somehow troubles the human experience. We don’t question how other young people live. We assume they are independent and paying their own rent.  This person’s question is a reminder that I am not understood as quite human.

  

This leads to my second irritation about answering disability related questions and how it relates to Heist Moss article. Much like how her experience of harassment by men makes manifest that we live in a sexist rape drive culture where women still struggle for respect; the fact that it is novel to the general population I can drive or live by myself makes manifest we still live in an ablest cultural where being disabled causes someone’s capacity to be human and do “everyday things” is still questioned.  This cultural confusion that disability somehow negates or blurs personhood is the thing I would say I struggle with the most as a disabled person. This far out ways any bodily limitation I may experience. I don’t want people to assume my friends are my care takers.  If I am out with a group of girl friends I want to be read as such. I often find myself doing things to assert my legitimacy as a person and worrying that people are or are not perceiving me as such.

It is a mix of this concern over not being seen as fully human and thinking about the context of disability related questions. That led me to really appreciate the article: “How to Talk to a Normal: A guide for the rest of us”  by  Rachel Cohen-Rottenberg. Here’s the link again: http://www.disabilityandrepresentation.com/2013/01/28/how-to-talk-to-normal-people-a-guide-for-the-rest-of-us/

Cohen-Rottenberg’s article is a satire flipping the script so to speak. Her writing imagines what would happen if we approached those we read as “normal” non-disabled in the same way we as a society approach disabled people. I really like her writing because it is a playful commentary that highlights how we must remind the general population of the humanness of people with disabilities. It illustrates the absurdity of this odd gap between disability and the human condition. Further to that Cohen-Rottenberg’s whole blog is a great collection of pieces on disability and representation, much of it subversive humor.

I am grateful to both of these authors and Jo for providing me with an opportunity to think about my interactions with people and my disability.

Thank you