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initial thoughts about a blindness article


I found a rather interesting article about a person who did what seems to be a rather intelligent simulation of blindness in NYC. There are things about the article that sort of grate on me, but it was also enlightening to me. Especially enlightening was the part about his assumption that blind people lived in a world of their own and would ask if they needed anything. This calls to me...



I don't want my disability to be a taboo topic... I am happy to help people understand as well as I can--my experience of disability is unique to me, of course. What I need is a way to exit that discussion gracefully without losing the person's interest altogether. Some of that has to come from me; but it can't all come from me. I would like for people to realize that not feeling like talking about blindness doesn't mean that I am inaccessible. I would like for people to start elsewhere and get to know me as a person, finding out about blindness as a part of that process. I would like it if people who are enamored with my dog in publid would observe me before they jump in to ask that question about what kind of dog she is. If I'm in the middle of what seems to be an intense conversation, it's not really a good time to stop me for curiosity's sake. If I'm crying, perhaps a more workable entry would be to ask me if I'm all right. I can respond to this by shrugging it off and indicating I need to be alone, or I can respond by choosing to enter into conversation with the person. Believe it or not, strangers who care can be incredibly comforting. And yes, there are places where I cry in public, like when I'm drying up after coming out of a medical appointment that has been especially painful or while walking over to get lunch after an especially emotional discussion at seminary.



I want people to feel that I'm "accessible." I just want all of me to be accessible.



Other thoughts to follow.

Comments

( 13 comments — Leave a comment )
kookie_chick
Apr. 11th, 2008 07:38 pm (UTC)
I go off topic a little bit...
I can understand where you're coming from, because I have my own (rather long!) "I wish people would realize" list when it comes to dealing with the hearing impaired. But the reality is that most people aren't going to realize anything unless I just flat out tell them. Clearly and politely TELL them. Clear communication is the key to hearing people (or sighted people, in your case) growing in understanding as far as how best to relate to people with our disabilities.

I've been noticing more and more over the past several years that a lot of people just do not seem to be intuitive enough to pick up on non-verbal cues and subtle signals that others send out via body language, tone of voice etc. So aside from just telling them pint blank (in a nice way, of course) there's no other way they're really going to learn.

I'm wondering - have you considered the fact that maybe people are intimidated by you? Maybe people are keeping their distance because they're afraid of saying the wrong thing and offending you. Is there anyone you feel close enough to or trust enough at school (even a teacher) that you would feel comfortable asking if they can observe you for a few days (without telling you which days) and tell you honestly what kind of "vibes" you're throwing off? If you're unconsciously throwing off "don't you dare ask me about my dog or my disability" vibes, that could have a lot to do with why there doesn't seem to be much interest in getting to know you better, on the part of your schoolmates. Just a thought.

I can understand your desire to be seen as a person who happens to have a disability rather than as a BLIND PERSON, but maybe that first conversation where someone starts asking you questions about your dog or disability can be one that opens up the doors to other conversations. Especially if you suddenly turn the tables on them and start asking THEM questions about themselves too. If you're kind and genuinely friendly to someone who asks about your dog or how long you've been blind, etc., and you also seem interested in who they are and what they're all about, then maybe they'll think, "wow - she's a really nice person. I'd like to get to know her better."

Just thinking out loud here...
3kitties
Apr. 11th, 2008 07:57 pm (UTC)
Re: I go off topic a little bit...
I've asked for feedback at various times. It is mixed. Most people I ask say that I'm friendly, etc, and should exercise more boldly the option to tell people that I either don't want to talk or would like to talk about something else. It is times when I've tried to change the subject that I've gotten the feedback that I'm "off-putting," even when I've done it by asking personal questions. Unfortunately, it is very rare that an initial dog conversation goes anywhere else, even on a friendly day. More people at church know my dog's name than know mine. I have to physically remove people's hands from her, and they get offended and ask "Why?" in very rude tones when I explain that she can't socialize. It's strange... Somehow I'm the one who is supposed to get good at reading nonverbal cues--cues that I have limited access to--but I'm not supposed to confront this lack of reading in other people. It is considered rude for me to say in a restaurant, "I can't talk to you right now. I'm in the middle of a conversation," no matter how I say it. I've been told that I should just answer and go on. But it has taken sometimes five minutes or more to get a person to move along in that scenario.

This post was more about wishful thinking than anything else, though. I always "have to understand" something about the other person. It doesn't seem to work both ways. I love people, but the constant being on display is very draining emotionally.
synonym4shedog
Apr. 11th, 2008 08:11 pm (UTC)
Teachable moment, I guess
Just got a mental image of someone showing up in my classroom (back in my teaching days) and wanting to pet my head and tell my students what a sweet and pretty and *good* person I am.

I knew not to interfere with a working animal, but until this moment it was just another of the myriad "lessons to get you through life" on my list.

You have made it immediate, and thus something I understand and will probably retain.

(But I'll bet your dog IS cute.)
3kitties
Apr. 11th, 2008 08:18 pm (UTC)
Re: Teachable moment, I guess
Wow what a cool image! Hmm... A tour group gets stopped because some person wants to go on about the tour guide... LOL! Thank you for the feedback. And you made me smile.

Btw, my dog is adorable, but she looks just like my last one except ofr a different body structure... And oh, my cats are adorable too (of course). Btw, Inca purrs in my friends-only voicepost.
diannaamarich
Apr. 12th, 2008 01:05 am (UTC)
Re: I go off topic a little bit...
This is why I simply refuse to be constantly "on display" as a totally blind person.

There are times when I say in a firm tone, "I really cannot talk right now." Or even, "I don't want to talk now." and I don't feel the need to give a reason, either.

We as blind people, aren't the only ones who throw off vibes. Trust me, sighted people have them as well. If i am not comfortable with someone, i take note of it. I talk to someone I know and trust about it, and go from there. Sometimes my instincts are right, sometimes wrong.

Regardless, people have to respect me and my limmits. I don't always feel like I need to talk about my disability, or how I do things, or the like. sometimes I just want to sit quietly and read, or listen to music on my iPod Shuffle or something.

I don't have a dog, so I don't have to worry about that, though I am certain you aren't the only one who's had to tell people to leave the dog alone. I once had that issue with a cane--someone thoguth it would be fun to try to play with it. One smack with the cane taught them otherwise--that it is not a toy and they need to leave it alone. I normally don't advocate using a cane as a weapon, but whenyou tell someone "no" repeatedly and they don't listen ... What's the old adage? "The burned hand teaches best." In this case it's the bruised leg--but it gets the point across.

I know your dog doesn't need to get violent--and I wish I could think of a way to tell those people. Have you considered having a *long* talkwith your minister of choice? Expressing your concerns, what troubles are, and getting his solutions. Simply explain up front that "asking you to understand the other people" isn't an option. He may have some ideas. She, for that matter.

I wish I had more to say--sorry this post got so rambly, I hope something made sense out of all this.

I ought to get back to reading on my BrailleNote now--little enough chance for true pleasure reading these days, except for the LiveJournal and what I can snag aftger work.

If you check out my Journal, you will see an entry about all kinds of books I have and am currently working my way through--fun!

I suppose I ought to grab the "left Behind" series. Even though I don't follow the Christian tradition, per say, I respect the beliefs and read some of the stories.
lilsinger_95
Apr. 12th, 2008 11:13 pm (UTC)
Re: I go off topic a little bit...
First, I really enjoyed the article. I do would love to make a post where I discuss some of these things partly because I also have mostly sighted LJ friends. It would be interesting to get remarks.

The "appearing intimidating and giving off vibes" thing is something I worry about a lot. I know that I can be an intense high-strung person just in personality, and I'm sure this doesn't help that much in this area, either. When my father brought me down to my university for a two day freshman orientation session, I remember him making a comment about how I seemed so much friendlier to the blind student we happened to meet while walking across campus at the end of our time there than I did to any of the sighted students I met through out all of the large and small group sessions we attended during our time there. And I believe that I probably did appear that way to my dad who noteably hasn't had much experience at all of seeing me interact hardly at all with peers sighted or blind. The fact is that I was teased a lot in school. For whatever reason, due to whatever combination of personality, social, and environmental traits, this has had a hugely profound affect on me. I am very easily intimidated by people especially ones whom are sighted and whom I sense aren't comfortable with blind people. I am (possibly) also extremely sensitive to the vibes of others and I think that the combination of my intimidation mixed wit the intimidation of others as well as my vibes of being uncomfortable because they seem uncomfortable ... well anyways I guess I'm just at a loss of how to fix any of that really. I know that I can't be the only person experiencing a similar combination, but I'm not sure-- beyond having discussions like this-- how to go about dealing with it. BTW, Sarah, I love that you put things like this up for discussion especially since you have a friends list whom seems interested in being involved in such discussions with a variety of perspectives.

I too almost never hesitate to answer questions about how sometimes life can be different for me because of my visual impairment. It's been drilled in to me from a young age that I am basically obligated to educate the public at large, and I voluntarily assume that role whenever possible. There have been times when I've resented this role, but I see it as a way to hopefully, as the above commenter pointed out, begin an open discussion with others. While thankfully in college some people who begin with those sorts of questions are usually at least interested in different sorts of topics and I am able to stear the conversation to other non-disability related areas. I remember a lot especially back in junior high kids would crowd around me after school while I read a book because they were curious. As soon as I let them touch the braille and explained it a little, they're curiosity would be quenched and they'd walk away. In college luckily it's not usually like that, though at least for me it seems less people are curious or comofrtable enough to ask in the first place.

Sorry for such a long comment, but this has stirred up a lot of thoughts for me as well.
lilsinger_95
Apr. 12th, 2008 11:21 pm (UTC)
Re: I go off topic a little bit...
Hmm, can't figure out how to edit the comment above. I did want to add that the "being on constant display" I too find emotionally draining. As I said I do put myself in positions to educate in that I volunteer to do JAWS demonstrations and participate on pannels, but I think that you're talking about is more of the day-to-day. That is probably the part which I resent. Because of what was nailed in to my head as a kid by m vision and mobilities instructor is that it's my job to educate regardless of what the circumstances. This I resent, and this I too find draining. But my personality is such that I feel as if I'm failing myself and the disability communitiy at large if I don't do this. Hmm, just something additional I wanted to add.
read2781
Apr. 11th, 2008 08:39 pm (UTC)
An observation
This is just an observation that I thought I'd throw out there for people to chew on.

I have not had the same experience as you while I have been at WMU. In fact, while I have been here, people have talked to me and not interacted with Julia. Is it because of the program I'm involved in? That might be part of it, but probably not all.

Even when I've been in the greater Kalamazoo community, people have interacted with me and ignored Julia. In fact, parents are more apt to tell their children not to pet the dog, she is working. This relieves me of the burden of trying to explain it to various age groups.

There you have it, a completely opposite perspective and experience.
3kitties
Apr. 11th, 2008 08:56 pm (UTC)
Re: An observation
I know you've been here and experienced it here... I'm glad it's not happening there. I think part of the problem is the lack of dog guides in this community--Loretta truly is an oddity except for the puppies in training. I don't remember having this problem in the urban areas where I lived or in the little college town in TX where there were five or six dogs in town. So that definitely plays a part. I've considered trying to get an article done in the paper.
courageousheart
Apr. 11th, 2008 09:19 pm (UTC)
Interupptions and Newspaper Articles
I'm going to pull my comment topic from two replies - the part about people feeling like they have a right to interuppt you because you have a dog and the idea about the newspaper article. Sorry, I'm a little inexperienced about replying to comments of another's journal.

When I was talking with someone in the business building the other day, a person who I had a class with once walked directly up to me and started speaking to me, talking over the top of me (and the other person who was trying to reply to me when I would pause for her to do so), and petting my dog. I tried to be polite about things, and he did figure out that I'd been in conversation, but it was hard for me to not stop and tell him, "Excuse me, I *was* in conversation, and I'd like to finish that before I speak with you." The only reason I didn't do so was that I didn't want to be too tough on him since he does have some cognitive issues, where he doesn't put together people being in conversation, but at the same time, I do try to educate people (I try not to let people with disabilities get away with being rude, either)...I just wasn't quick enough to do it that day.

Now about the newspaper articles. In January of 2007 I was approached by one of the newspaper staff at my college who had noticed an increase of the service dog teams and wanted to do an article about them. I liked the idea and we did the article, and it got a lot of good publicity for Tux and I, I think. The writer even respected my desire not to disclose my disability (I was afraid of people trying to trip me up or something because of my balance issues if they were disclosed) and wrote the article as if I was training Tux. Now that I've been at the college for two years, I'm not so concerned about someone trying to do something to me (they are intimidated by Tux) - and I would/do disclose my disability. But on the publicity part, things worked out very well and many people commented on the article - I say get one done if you can.

If you're talking about an article for a town paper, though, I'd start with a letter to the editor if you'd like - sometimes when those come across the editor's desk, they get a story idea, or people see them in the letters section and get their eyes opened anyway. Several years ago, a guide dog my area at the time was assaulted by a child (and later had to retire, very sad) - and the handler wrote a letter to the editor expressing his dissapointment and sadness and it really helped to educate the public. If you wanted to do something similar, about not petting Loretta and to see you instead of the guide dog, you could try writing a letter and seeing what response you get.

Hope that helps,
Courageous Heart & Tux
brighid0704
Apr. 11th, 2008 11:39 pm (UTC)
I ink it would help if people were better educated about disabilities. There's something so very disrespectful about approaching a total stranger, and asking a on of rather personal questions. Yet, a large percentage of people don't see it that way. They igure they're expressing an interest in us, and so, becase we're so very pathetic, we should be grateful.

People also view it as our "jobs" to educate others. If we choose not to do it, they get angry or offended.
jenandbronze
Apr. 12th, 2008 05:12 pm (UTC)
It is odd I am reading about this, since I was talking to Mom about this yesterday on the way home, how the disabled are portrayed in ewnspapers and the image the public is learning about them. I don't think that was great grammar there, so I am hoping you understand what I am saying.

I think it is sad that what we say is taken out of proportion when it goes to print. I've been lucky though and have explicitly said that is how I want it mentioned in the paper, so things aren't taken the wrong way etc. I want people to know and understand more about deafblind and guide dogs in a more positive light!

We are not dumb at all, we just have some barriers, and we are able to overcome those barriers.

I am one of the few that don't mind answering questions, since I rather people be open since it isn't going to help them learn to understand things if they don't ask in the first place. If I am in a hurry, i just politely say, "I wish I can talk right now, but I need to get going... Have a great day." I am a friendly indidivudl and very easily approachable, and my smile is supposedly infectious (LOL!).

I encourage folks to ask questions...

Just my two cents.
quirkofonic
Apr. 13th, 2008 12:18 pm (UTC)
I think a lot of us as blind people struggle with this thing about being seen as a whole human and not just that nameless faceless blind man or woman. The author of that article has hit it spot on, because I've also come to realize that part of why people don't know what to say to us is that they think they can't relate to us or perhaps they think we can't relate to them on a cultural level. We blind people give so much jaw-flapping time to educating the sighted, and I wonder if we're educating them about the wrong things. Perhaps we who seek to educate should focus more on how we relate culturally. I think it is still assumed we don't enjoy movies or TV, which are more a part of pop culture than ever before. Do they think we don't know what YouTube is, or who Harry Potter is, or are aware of American Idol? There are people who might criticize us because we might spend lots of time with our fellow blind people, but I honestly wouldn't do so. We as blind people are individuals and have our own unique sets of experiences in life and our own sets of priorities. I do not believe we should all pursue one grand vision where if we all would just try and pass as sighted and blend in, everybody who formerly snubbed us would whisk us away to the nearest coffee shop or bar so we can have an intelligent non-blindness-oriented chat long into the night and we all will become lifelong friends. Dream on, little dreamer, there ain't no magic solution. I'm honestly not much of one to offer up too much advice about socializing because I discovered back in about the year 2000 that in fact I was an introvert and I'd be a lot happier if I relaxed and was OK with that, so that's what I did after resisting that part of my nature for a couple of very sad and lonely decades. Yes, I'd still love to have local friends to hang with and have fun with, but I've realized that outside of people's general hesitancy to do more than play helper to a blind person, most folks just don't have time to make friends with anybody, blind or sighted or black or white or whatever, between working, commuting, and trying to hide from work. And now what with rising fuel costs, people just can't go galavanting hither and yon just to be social. I don't necessarily like it, but if I worry about it too much, I'll just make myself feel miserable and I think I'd rather not inflict misery on myself if I can help it. Gotta be realistic.
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