Monday, May 07, 2007

Please Don't Assume I'm Miserable. Just Ask Me

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.


Anonymous said...

As you pointed out, and as was the main theme of the original post at Gimp Parade, there are indeed differences, whether it is related to location, religious beliefs, general culture, etc. And as you also pointed out, persons with disabilities are not a monolithic group. Actually, as a group, I think we are probably the least heterogenic group out there.

I respect the fact that everyone has different perceptions and reactions to this sort of thing. I admit that personally, I do not see everything exactly how you do but I guess some of my own experiences are different and have shaped my own views on this.

I have traveled a bit for work, California, North Africa, parts of English Canada (I am located in Montreal) and I have certainly noticed a difference in how people interacted with me. And to be fair, I should point out also that my disposition was probably altered as well since I was traveling.

I do find it rather annoying(?) to have someone refer to disability or cancer as hideous and a source of misery though I will respect that every one has a personal outlook on what it means to them.

But personally, while I do not mind talking about my disability as such, I just feel that there are contexts that must be taken into account. I do not find it acceptable that complete strangers feel it appropriate to just come up to me while I am waiting to cross the street and ask me what is wrong with me. Or stare endlessly with a very visible look of discomfort or fear or disgust until I basically have to ask them if they need anything. And this happens far too much, at least where I live. Come on people ! This is the 21rst century. We should be able to do better than that by now.

The point I was trying to make over at Gimp Parade is essentially that this kind of behaviour feels to me like that for many non-disabled people, our disability is the only thing that defines us, it is the only thing worth enquiring about. Because while I whole-heartedly agree that my disability is a big part of who I am and has played a big part in shaping my values and perceptions, etc., I am a complete human being and I like to think that I have much more going on than my wheelchair.

Anyway, very sorry for such a long comment.

Anonymous said...

Hmm, I guess that should have read "Actually, as a group, I think we are probably the least *homogenic* group out there."

Though I am not sure that you can say that in English but I guess you know what I mean.

Anonymous said...

Thank you, Bint. That was very interesting and, I must confess, in some places quite surprising for me to read.

Now, while most of what I said was thinking aloud, ardently hoping other people would chime in, you should be aware that specific conclusions I have drawn about the people around me come from years of serving, listening to, and closely observing them, not to mention being raised by someone from New England. Also, the description of cancer as "hideous" sums up my own decades-long experience of it, as well as what other cancer patients I read and the many others I also know personally say. I'm sorry; for me it has been hideous, and I haven't even done any chemo. And while giving up my leg to it is not the worst thing that has ever happened to me, not by a long shot, I don't really want to just start thinking and talking about it out of the blue, at the whim of strangers, over iced tea on the sidewalk or while I'm shopping for gardening supplies.

Never in a million years would I think to describe cancer as "part of who I am." Honestly? I am almost dizzied to discover that anyone else would. Goodness gracious, I strongly feel am who I am in spite of cancer, not because of it. Thus while I certainly have things to say about it to strangers, for all the very good reasons you described and more (hence all the blogging), I prefer to control the time and place. And this preference is what I keep hearing from other people, too, preponderantly though obviously not exclusively.

I apologize for the lack of clarity around the "God bless you!" thing. That was shorthand for people who say "You poor thing! God bless you!" and then are so busy gawking that they don't, for example, get off the wheelchair ramp so you can get by. Just an example. Just one of about eight thousand examples I could give you about the "God bless you" people I've encountered up here. It's something Blue and I have discussed before, and it was rude of me not to explain better.

It's so difficult for caring strangers, people who care about not hurting other people as much as they care about loving them and expressing every kind of love to them, to know what to say and do around disabled people. There are so many of us, and we are each unique. You are so right to emphasize that we are not, as you say, one big monolith. (I say "we," when in fact I still haven't even decided whether I am one or not.) So for a baseline, I stand by my statement that the best thing to do is always just to be yourself. Wherever you are. Whomever you're talking to. But if you are corrected -- and sometimes we all will be, even when we mean well -- accept the correction with grace, not defensiveness, anger, blame, or hurt -- just like you would if you accidentally stepped on someone's foot and they yelled "OW!" Would you not agree?

But enough of my voice already! Thank you so much for yours.

bint alshamsa said...

Wow! This is a pretty lively discussion! I love it when I hear from other PWD, especially those who are women. Welcome to My Private Casbah, Zara and Sara. Please feel free to disagree with me and to let me know what's on your mind regarding what I say/said, even if your view is that I'm full of bullcrap. I know I get resentful as hell when people play softball in a conversation with me, especially when it comes to disability related issues, so I'd love for us to just discuss this openly.

bint alshamsa said...


I also believe that context should be taken into account. I also don't care for it when I see strangers stare at me with that look of disgust that I I am also familiar with seeing from some of them. However, for me, this has next to nothing to do with my cancer.

I dislike those who stare without speaking regardless of why they may be doing it. As a woman of color, I've been given that same look even when I know that there isn't any way for the stranger to know that I have disabilities. For some people, having to be in close proximity to a Black person is enough to elicit this reaction.

Such people will always exist. We should not expect to be able to eliminate this reaction even in the 21st century. I find people like these to be quite easy to deal with. In fact, it's really very fun for me but maybe it's because I've dealt with it my whole life so it no longer shocks me or affects my day so much.

I have no idea what race/ethnicity you may be considered but my experience is as a woman of color with disabilities. Now, while some people may just be defined by their disability, there are plenty of people in this world who won't give a fart about my status as a person with disabilities because they are too busy defining me by my race. I think that we (the PWD community) need to understand that there are very different realities and experiences one will have based, not on what disability we have, but instead based on our status as women or as people of color. These experiences are just as valid as those who do not have these other issues to also deal with simutaneously.

bint alshamsa said...


I'm so happy that you came and visited my blog to add more of your thoughts about this. They are much appreciated and welcome here.

I understand that your description of cancer as hideous may sum up your experiences with it. Likewise, so are mine. I've been dealing with my disabilities for my entire life, even before any of them were diagnosed. As far as cancer, I have been surrounded by it ever since I was a child. My maternal grandfather had it for years and eventually died of it. My mother had it and is now in remission. My maternal aunt also had it. My paternal grandfather had it and still does. On top of that, since developing it myself, I've been involved in support groups (both on and off-line) for people who have/had cancer.

While I have not had a limb amputated, I have had some ribs removed and some parts of my spine shaved off. I've done chemo and radiation and surgery. I'm currently considered incurable and I've had that "terminal status" applied to me more than once. So that's where I'm coming from.

Personally, I enjoy talking about my experiences with people. I want them to look at me and know "This is what living with incurable cancer can look like." As a feminist, I enjoy talking to people about what it means to be a woman. As a POC (person of color), I want people to see that we are not all like the television portrayals of brown people. Sure, I could just refuse to talk about being a woman or being a POC or being a person with disabilities. This is America. That's my right. But that isn't my desire. And I'm not alone.

When I go out with the folks from my local cancer support group, we proudly identify ourselves as folks with cancer. Not only do we talk about it with folks we encounter. We also joke about it too. Talking about it doesn't hurt me and from all that I've experienced, there are lots of others who feel the same way. Just like I've held conversations about race and feminism in places where I didn't come for that express purpose, I see no reason to treat cancer differently.

Lots of people who have/had cancer can blog for years without ever seeing any reason to talk about their cancer, but I make the choice to talk about it and make it (and my other disabilities) one of the main focuses of my running dialogue on My Private Casbah.

I'm not sure I can understand why you'd be dizzied that anyone would feel like cancer is a part of who they are. I can understand that some people would like to ignore the reality of cancer but why in the world would anyone think that we all want that? To me, it's like ignoring the fact that I'm an American. Even if I didn't want anyone to talk about it, that won't stop them from factoring it in to the judgements they make about me. If I hope to be considered in any particular way when it comes to what people think about those things that are plain to see, then I have to open up my mouth and use my voice to try and exert some influence over how they think.

If man came up and asked me a question about what it's like to be a woman or if a white person came up and asked me about what it's like to be a person of color, then I'm going to give it to them. Now, depending on how they approach me, my answer may be more or less palatable to them but if they ask, then I'm going to assume that they want an answer.

One of the things that having cancer has taught me is that I can not control the time and place when life happens. Before cancer, I was on the fast track through life with my entire future plotted out but then came cancer. You'd think that having Lupus would have taught me this lesson but it took the lupus/cancer combo for me to figure out that I don't need to control everything. Heck, I don't even need to control everything that can be controlled.

Instead, I've learned to enjoy the moment. Knowing that my cancer is here to stay takes the pressure off me to try and feel like I need to do something about it all of the time. Cancer is there. It's hitched a ride with my life so I figure I might as well see if there's a way to incorporate it. Instead of carrying it like a basket on my head weighing me down, I've chosen to wear it like a purse on my side, moving with me as I go about my life.

You may hear lots of people talk about wanting to control the time and place when they deal with the reality of living in this world with cancer but that is a very skewed sample. It doesn't represent the whole world community of people with disabilities.

Your experience is colored by the culture(s) you grew up with and are familiar with. So are mine and, as it happens, that experience reflects a different set of cultural values and expectations. I wish it wasn't like this but I think that this boils down to ethnocentrism.

Anonymous said...

@bint alshamsa: Thank you for the warm welcome. To answer your question, I am white but as a francophone who was born in an English part of Canada, I was subjected to the prejudice of anglophones. After my family moved to Qu├ębec (the French province of Canada), I was subjected to the prejudice of francophones who perceived me as an outsider, even as a non-francophone, even though I myself am francophone. So proof, I guess, that some people will never be satisfied ;)

Anyway, while disability has always been perceived rather negatively or erroneously almost everywhere you go and while ethnicity and colour have been perceived rather negatively or erroneously depending on where you live, having both and being a woman on top of that can certainly contribute to imposing on us a "definition" of who we are or should be by others whether they know or understand anything about it or not. I think that at the core, to a certain extent, societal standards of beauty and validity (usually defined by men) play a big part in that. Standards that most of us, whether we are disabled or not, of colour or not, etc., can never hope to live up to. But regardless, these standards are there and they set the bar.

And call me a dreamer but I think that we should be able to do better in this day and age. As a species (re: the human race), we have come a long way from when we first slithered out of the primordial pool. We are capable of great vision and innovation and compassion and understanding. We can do better and I while I personally do not really expect it, I sometimes can not help but be surprised at its absence. Makes life a bit more crappy at times, after all, disappointment is only possible when we have expectations (whether we can admit to them or not ;), but I would not have it any other way.

Have a great week !

Anonymous said...

"I'm not sure I can understand why you'd be dizzied that anyone would feel like cancer is a part of who they are."

It often happens when I get my mind cracked open. All that oxygen, you know. :)

It's like when I read over at Ballastexistenz about how autistic people really don't like it when people look them in the eye, smile and say "hi." That almost dizzied me, too. It contradicts everything I was raised in/with to think about including everyone in a conversation (with eye contact and smiles), about making a point of including every member of a family in the high beam sweep of my projected affection. Since you can't tell someone is autistic by looking at them, I'm still chewing over how I will incorporate this knowledge into my personal set of tools for polite behavior.

It's sort of related to this discussion, I think. And anyway, I do find this whole topic very interesting and also think talking about it is important.

I go back and forth about the whole "life happens" thing, and I used, as I said over at Blue's place, to be more casual about all of this. I may be on overload. I have been a visually obvious person all my life, and honestly, I was looking forward to middle age as a time when I would be less visually obvious due in part to the natural subsidence of my body's ability to conform to what Twisty calls "the hawtness imperative." Heh. I never expected to be such an object of attention, not at this age. And when I go out in public, I do feel like an object, all too often. It feels like such a dirty trick. And I've only been dealing with this part of the cancer thing for almost four years. (I had big, obvious scars on one leg before that, but that was nothing like lurching about on a fake leg. Nothing.)

It is easy, maybe too easy, for me to project that someone who's had an obvious physical difference for twenty or thirty years, for a whole lifetime, might be way more burned out than I, and that people who are new to cancer might be confused and emotional, easily hurt and humiliated and not strong enough to tell people off, especially since that's most of what I hear and read. That is what I have to go on in forming my own behavior and expectations. It's enlightening for me to hear something else, and it's especially interesting to hear that something else ascribed in such large part to regional/cultural differences. I'm not sure this analogy is completely apt, but it feels a little like finding out you were raised in a dysfunctional family and that all along, the whole time you were growing up, there was this whole other way of being a child that existed right next to your childhood but was completely inaccessible to you. The main way this analogy fails, of course, is in characterizing the culture where I dwell as being "dysfunctional," which it isn't necessarily. The way it works is as an expression of yet another realization that some of the people around you have vastly different experience and expectations than you ever dreamed possible, and in not always knowing what to do with that information.

I will think about all this for a long time. I also appreciate not being "softballed." Other people telling their truths, even though or especially when they contradict everything I ever thought I knew, is one way I learn. So thank you very much for your thoughtful candor.

I would still like to see more education around this issue for children -- not horrible, self-conscious education, but just some kind of ordinary good manners education -- and I would still like to see more adults around me behave like adults and also think about the person they're speaking to before they open their mouths. I would also like to have perfect manners and poise myself, pancakes with maple syrup for breakfast every day of my life, a big, fat trust fund, and world peace. Heh.

At least I can make pancakes sometimes myself.

bint alshamsa said...


I can not even begin to understand the dynamic that you describe between francophones and anglophones. I wonder if it's anything like how things are here. We have a rather significant francophone population here in Louisiana. Here we call them Cajuns which is a corruption of the word "Acadian". My brother married into a francophone family and then relocated to their community. Many of them in that area do not ever venture out, even though there are cities in close proximity to it. Many of the adults only speak French so even visiting the surrounding cities might seem like being in a foreign country. My brother's mother-in-law has only been to New Orleans (less than thirty minutes away by car) five times in her life. Even though they look quite similar to the white population here (there are some differences--they tend to be a lot swarthier and almost all have brown hair), they do not consider themselves as belonging to the same category as them.

They are sometimes looked down upon and in my lifetime, I have heard of their skintone being described as "dirty white" and then there are all the jokes about them being inbred which is a reference to the somewhat closed nature of their society.

As a person of color, it is very hard for me to imagine the idea of white people being able to subject other white people to prejudice. My mind has the tendency to lump them all together which really isn't fair at all.

Perhaps this tendency of mine is sort of like how people tend to do with people with disabilities. You know, they just stick us all in one group and treat us all in the same way regardless of whether we feel like we are one group or not. I will have to think about that some.

I think your optimism is the right attitude when it comes to behavior from adults. You're right, we can do better and I think I let people off the hook by saying that this is just the way things are and it will never be different. Thank you for giving me so much to think about today.

bint alshamsa said...


It often happens when I get my mind cracked open. All that oxygen, you know. :)

Boy, don't I know it! I'm surprised my brains haven't dried out completely given how often I read about things that totally rock my world!

My "son" has Asperger's and he has two siblings with Autism. It took me a little while before I understood that they weren't being rude when it seemed like the two younger kids just ignored me when I talked to them. Now I feel like a total idiot because, after reading about autism, I realized that I was the one being rude.

It has been a challenge with my son because he never wants to hug me but in other ways he's the sweetest child in the world. He has a hard time getting along with the other kids at school and when I hear about them making fun of him, it just burns me up because he's doing the best he can and it is them who need to learn how to get along with him. If they had proper education--the sort you mentioned--then these problems could be avoided.

My middle brother has a developmental disability due to a car accident when he was a baby. He's struggled through his whole childhood education. When he was in the special education classes, he was still smart enough to understand the insults that the children in the regular classes made about them. After enduring years of this, he was determined to be mainstreamed into the regular school program to escape the embarrassment of being one of "those retarded kids".

This brought forth a whole different set of problems. Now that he was in the regular classes, when he engaged in behavior that was perfectly understandable for his level of functioning, it was considered immature and disruptive behavior by his teachers. He managed to graduate from high school in the mainstream classes and to this day, I don't know how he managed to hang in there and accomplish it. He even went on and took a couple of classes at the local community college. Now he's a truck driver and he's married with two kids.

He doesn't see himself as being disabled. He'd say that he was disabled as a child but not now. I think he might be an example of what you described yesterday as far as being who you are despite your disability. He's no big time lawyer or doctor but he has a working-class lifestyle and our family considers this a great achievement. He's living his dream.

He did go through some hard times when he tried to live on his own because he wanted to prove that he could make great decisions without any assistance from others. Unfortunately, in the world we live in he was taken advantage of by people who could see that he was looking to fit in. In the world I wish we lived in he would be able to live on his own.

Eventually,he moved back with my parents and they were able to help him avoid the kind of stuff that tends to happen when he doesn't have anyone around that he can trust to help him navigate this world that I think moves a bit too fast for him at times. He married his wife who moved in with my parents until she got a better understanding of how he is. Eventually, they got an apartment of their own and my brother is making more money than I do.

I wrote all of that just to kind of show how different the people in the disability community really are. I know I'm preaching to the choir here but, you know, I just wish that all of us really could have the option of deciding whether we wanted to be considered "disabled". When I peeked into your blog, I read about your feelings about whether you're disabled or not.

My first reaction to what you wrote--and you don't even have to tell me how awful it is--was to feel a little resentful. I'll suspect that the person doesn't consider themselves disabled because they don't want to be grouped with us--the adult version of the "special education class".

But that's unfair, right? I mean, I'm in no position to judge why someone feels the way they do. I have a multi-ethnic daughter. To me, she should be able to describe herself any way that she wants to. Right now, she's totally into her Italian roots. However, since she has a lot of physical features associated with other races, she has encountered resistance to the label she chooses to use right now.

If it's so easy for me to see that she shouldn't have to call herself what other people want her to call herself, then why is it I'm not just as understanding with those who feel the same way about the "disabled" label? Honestly, I don't know and I really hadn't considered this question until I started thinking about what you've said (here and at The Gimp Parade and on your blog).

Maybe I'm a lot more closed-minded than I'd like to believe that I am. I mean, on some days, I blend in pretty well. My scars are all across my back and chest. When I'm not flaring up, my lupus isn't something anyone would be aware of either. I'm not permanently confined to a wheelchair even though I do use one periodically depending on what's going on with me but even that isn't very often.

So, I do get a break from being viewed as disabled even if I'm not trying to get one. I think that gives me a privileged status over people like you and Blue and others who are almost always viewed as being visibly disabled.

I think that's something that I came into this conversation ignoring or overlooking. So, maybe you are on overload. But I should have thought more about why that might be. If I didn't ever get a break from the disabled label, if I didn't sometimes have the choice to call myself disabled (or simply not say anything and let people see me as non-disabled), then maybe I wouldn't be so eager to believe that everyone else should embrace their disability.

I don't know. This is hard for me. In a lot of ways, I feel like I am more disabled than a lot of people who are visibly disabled all of the time because of my status as incurable. But when it comes to my interactions with people in society, maybe I do have an advantage over those who may not have a disability that's going to kill them but are still viewed as visibly disabled.

I am going to come back and write about this some more later on this evening. If you have any thoughts about what I've said so far, then please feel free to add them.

Rex Libris said...

I know this is late, but I just discovered your site today via feministe. I really appreciate this conversation. My father has MS- a condition that leaves him mentally aware, but physically disabled. He has trouble walking, and his speech is often slurred (particularly when he is excited or upset about something), and my aunt has been blind since she was a teenager. When I'm with them in public, the reactions of other people are sometimes surprising and often upsetting. In my father's case, I can see that people sometimes get frustrated with him, because he walks slowly with a cane, and his foot drags, but nobody has ever, when I'm around, asked him about his condition. The thing is, he'd rather they did. He doesn't mind talking about it, as long as the person asking is sincere and polite about it. Particularly upsetting, to him, are people who assume that there's something wrong with his brain because of he's having trouble speaking clearly or having trouble walking- the ways that some people talk to him loudly and slowly, as though he can't hear, or as though he's stupid. I've noticed the same thing with my aunt- although she's got absolutely no problem telling someone "You know, I'm blind, not stupid. Don't talk to me like I'm an idiot."

Anyway, I really just wanted to say that I appreciate all of you sharing your stories.