Blue over at The Gimp Parade wrote an interesting post about "Gimp Etiquette". Lots of people chimed in with their views about what they prefer and how they think people should behave with respects to interactions with people with disabilities. One of the comments really irked me and I think that their sentiments are probably not as rare as I wish they were. I haven't quite decided whether this is only an internecine issue among the general community of people with disabilities but I suspect that if some of us with disabilities think like this then there are probably lots of non-disabled people who have similar views.
I decided to address her comment in the hopes that others will see that there is a diversity of views about this. People with disabilities are not some monolithic group. Some people who are deaf do not consider themselves disabled. Some do. Some people who have had limb amputations do not consider themselves disabled. Some do. Even among those who do consider themselves as having a disability, there are diverse opinions on topics like exclusion/inclusion, euthanasia, use of prostheses, and much more. In short, we are individuals.
I wanted to make that clear because people often try to find some rule that will apply to how they deal with all people with disabilities. Sadly, there are even some folks within the disability community that also have this tendency.
Blue had quoted my Similarities Between Being A Person Of Color & A Person With Disabilities post. In it, I discussed how I'd seen a couple of other people (on another blog) talk about their distaste for those strangers who sometimes approach them to ask questions about their disability and I wondered if the reason that I'm never bothered by these questions had to do with the fact that I'm from the south. Blue inquired about whether others had noted any regional differences in behavior and preferences. Sara, from Moving Right Along, commented on my view by saying,
However, just because someone is warm and friendly doesn't mean s/he's also polite and considerate, and bringing up another person's potential source of misery just because you're bored and want to talk seems wrong to me, even if it is culturally acceptable locally
Well, here's the problem with that: What's wrong depends, in large part, on where you are. Earlier in her comment, Sara mentioned
For a long time living in New England I stopped smiling and saying "hi," though, and got all furtive like, not everyone else here, but so many people. I had been rebuffed just smiling and saying "hi" so many times! But working retail I realized that the people around me were starved for kindness, just suspicious of strangers. They needed to see a motivation for the kindness or at least have it framed by a safe environment like a grocery store cash register before they could accept it. And then I realized that even though I'm a "foreigner" here, I had let local culture shrivel me. So I'm back to smiling and saying "hi" to everyone. And on a nice spring day, everyone smiles and says "hi" back. Almost everyone, anyway.
Now, personally, I don't mind people saying "hi" to me. In fact, I enjoy it. However, not everyone feels that way, regardless of the reaction that Sara says she usually receives. Reading her comment made me think about Eastern culture. In many societies, it would be rude and/or improper to smile at and engage in unnecessary speech with strangers even if you are behind a cash register. It's presumptuous to assume that people that one doesn't even know are "starved for kindness". Is there any reason to doubt that some people may actually prefer the customs that Sara criticizes?
When I first moved to Illinois, I was fresh out of the deep, deep south and coming from a social environment where chivalry was not just a nicety but actually a requirement. I was living in a co-ed dorm so there were plenty of male-female interactions. Plus, there were lots of great stores and I didn't have a car, so I did a lot of traveling on the "El" (elevated train) and walking downtown on the Magnificent Mile.
Down here in New Orleans, I used to catch the bus a lot. You could get all the way out to the surrounding cities via the bus for less than three bucks or you could get a pass and ride the bus all day long back and forth for about five dollars. During the years that I regularly rode the bus, I saw a lot of things. There were some rude people but most people were pretty well-behaved. Even an elderly man would try to get up to offer his seat to a pregnant woman. In contrast, I watched on the El as folks just watched a woman struggle standing up. But okay, maybe that's just the "plebs", right? Wrong!
The dorm I lived in was chock full of rich kids and the Mile was full of very ritzy stores. Now, where I'm from, people in that income bracket/social sphere are supposed to have impeccable manners but, to me, those people in Chicago were down-right rude. I was taught that men were supposed to open the door for women. Both genders were to open the door for the elderly and all adults were to hold the door for little kids. None of that seemed to apply up there. The boys I met had no idea what side of the sidewalk to be on when you walked with them and I never met a single student, female or male, from Chicago who knew that when a male and female are together, the male is supposed to go first when going down the stairs and the woman was to go first when they were going up the stairs. It might not seem important to most people but, as a girl who was coached on this stuff all throughout childhood, it was very easy to become frustrated with those who were not so trained.
I was thoroughly disgusted with the guys up there. To me, they were simply ill-mannered and should have been "raised better". However, in one conversation when I was talking with a girl from Chicago, I marveled over the fact that women up there just let men get away with not holding the door for them, she basically told me that she was far too busy to wait on a guy to open the door for her when she's trying to get some place. That was an epiphany for me.
They weren't rude nor were they wrong for not observing what I believed to be common courtesy. They just valued different things and they were following the rules of etiquette in that area. That's why I see Sara's statement as problematic. She's not from here, so it's not really sensible to try and apply her ideas about what's proper and improper to this obviously different culture.
Besides her view about what's wrong, there's also that other part of her comment where she mentions bringing up some one's "potential source of misery". The truth is, anything could be a potential source of misery, so if her principle were followed, one should never bring anything up with anyone. I understand that there are some things that people tend to associate with misery but I'm not so sure that I'm comfortable with the idea that having a disability is necessarily more likely to be a source in misery than other things one might have.
Sara goes on to mention a fellow New Orleanian blogger, Liz, who expressed delight over an incident where someone saw her post-chemo hair and recognized her as part of the "secret sisterhood" of people who have/had cancer. With regards to what Liz said, Sara mused that
If someone had said that to her while she was still in chemo, deathly sick, and still bald, I wonder how she would have responded...well, you know, she's in the south and seems like a generally friendly person, so maybe it wouldn't have fazed her, but I can't help but expect it would have charmed her somewhat less
Now, I have no idea how Liz would have felt but I've actually been in the situation that she posited. Despite what Sara expects, I really got a lot of comfort from the folks who could tell what was going on with me and took the time to give me a few words of encouragement. Many of those time, such interactions ended with me being given a hug. Upon meeting other people who have/had cancer, I really enjoyed congratulating them on surviving another day.
As a matter of fact, there were more than a couple of cashiers at Wal-Mart who stopped and gave me hugs even when it meant holding up the line for a second and I never heard a single customer complain. One of the cashiers broke down crying to me one day because her sister had just been diagnosed as having an incurable cancer and she didn't know what to say to her or how to talk to her and she didn't know anyone who could give her advice. By asking me about my cancer and getting a friendly response from me, she felt comfortable asking me about how to deal with her own sister. I feel like talking to her and comforting her was actually a service to another person in the "sisterhood" because her sister would benefit from having a sibling that had a better idea of how to effectively support her.
And you know what? It meant a lot to me that even random strangers would take a moment out of their day and say something kind instead of just turning away as if I were some hideous monstrosity. I'd rather deal with the folks who ask questions than the ones who just turn away as if I'm walking around smeared with poop on my face or something. Seriously, I detest the folks who do the "if I don't look at you, then maybe you'll disappear" reaction when I happened to be in close proximity to them. It reminds me of the folks who think that saying they "don't see color" or are "colorblind" when it comes to issues involving people of color.
I have a beautiful head. When I lost my hair from methotrexate, it seemed as if every single African boy on campus remarked on how pretty my new look was. Do you know how empowering it was to be seen as beautiful even while I was going through such rough times? At first I wore scarfs to cover my head but the confidence I gained from the supportive statements from others helped me to feel free to show my head as it was, to show that nothing about beauty is necessarily precluded by having cancer.
I wish I could say that Sara stopped there but, unfortunately, she didn't.
Generally, no matter where you live, I think it's best not to bring up hideous things like cancer to strangers who seem to be suffering with it, even if you've got it, too, and no matter how much you burn to express sympathy and/or support
That line really bugged me. Saying cancer is a "hideous thing" was pretty offensive to me. Cancer is a part of who I am just like being a person of color, being a woman, being a mother is also a part of my identity. While there can be some pretty awful things about it, I don't consider it to be hideous. I just wish she'd have put herself in my shoes. What if someone were to say that being a person with a prosthetic leg is a hideous thing? I'm thinking that she might not see it that way or appreciate having someone assume what her experience is like.
People who have it or any other nasty thing to deal with every day deserve any minute or two of their lives they can grab where they don't have to think about it, even if the rest of us are exploding with love and a desire to be of use
I know I enjoy the times when I don't have to think about my disabilities but I don't necessarily try to live my life thinking about it as little as possible. I actually see things quite differently from what she suggests. In reality, cancers like mine don't get nearly enough funding. The only way that will change is if it gets more attention. And guess what? Non-disabled people aren't exactly beating down the doors to spend their life fighting for stuff they know nothing about.
When people say "God bless you!" to me when I'm visibly disabled (sometimes my issues are not as apparent as on other days), unlike Sara, I actually LIKE it. I look at it like this: People down here are really religious (Louisiana ranked the highest of all the states when it comes to those who attend religious services weekly). When they say "God bless you" they are essentially wishing you the very best in all things. That's a sentiment that I can definitely appreciate from anyone whether I'm disabled or not.
While I was mid-treatment, I experienced a moment that will remain in my memory for the rest of my life. At an inter-faith social function, I happened to meet a rabbi who had also dealt with cancer himself. Rabbi Weinstein--who is one of the most ethical, compassionate, and intelligent individuals I have ever encountered--asked me if I minded and, after I assented, he offered up a Jewish prayer for healing and recovery for me in Hebrew and English. I'm not Jewish and he didn't know me at all but he took that opportunity to show me--a complete stranger--a measure of human kindness that the average person rarely gets to see from their fellow man. Do I wish that interaction had never happened? Do I wish he had ignored the fact that I was obviously dealing with a lot of issues that he could personally relate to? Not one bit!
I'd rather people ask me questions than to walk around thinking that my cancer makes me miserable. In fact, having cancer makes me feel more alive than I ever did before it. But you probably won't find that out if you decide that having cancer is miserable and any outward sign of its presence should be ignored. Often people aren't just ignoring it because they are trying to be polite. They are ignoring it because, for them, the idea of having cancer is so horrifying that they'd prefer for people like me not to talk about it with them.
So yeah, put that in your pipe and smoke it.