Dancing Denali

Deaf/Hearing Relationships

2009-05-28T01:21:00.000-07:00

Deaf/hearing relationships, romantic relationships between people with severe hearing loss and those without it, have unique problems with frustratingly obscure solutions.

Among many issues, one particular issue is that the hearie tends to fall into the role of interpreter in mixed hearing settings. For instance, if the couple meets up at a restaurant with several of the hearing person’s friends, the hearie would have to interpret the conversation for the deafie. This partner might find herself doing a lot of voice interpreting or ASL. However, since the hearing partner wants to participate in these conversations, as well as help the deaf partner participate, the hearie faces the unique challenge of simultaneously interpreting and participating in conversations. If the hearie is interpreting everything, then the hearie is so busy, maybe even stressed, that s/he doesn’t have the millisecond to contribute her own two cents to the conversation. Conversely, if the hearie doesn’t provide enough interpreting the deafie will not know what is going on in the conversation and will feel left out. The challenge for both people is to find that perfect balance where there is just enough interpreting that the deafie doesn’t feel left out, yet not so much that the hearie never gets a chance to participate in the conversation.

I’ve looked up and down searching for the perfect solution, the secret to achieving the golden balance where both partners feel happily engaged in a mixed hearing conversation. Some people argue that the hearie should teach all her friends ASL, or at least insist that they all sign up for classes. If all hearing people knew sign, then everyone would be able to sign to each other and the communication barrier would not exist. Unfortunately, many people are only half interested in ASL and concoct a million and one excuses for not finding the time to learn it. Another problem with asking that everyone learn ASL is that there would still be that time span when the various friends would be learning ASL. During that time they would be unable to have full conversations in sign since they would not know enough ASL to do so.

Another flaw with this solution is that deafblind folks would still require interpreting even if all the other friends knew ASL. Sure, the deafblind person would be able to have one-on-one conversations with all the friends instead of with just his partner. However, whenever there is a group conversation the deafblind person would only be able to participate if someone interpreted the conversation, which brings us back to our tricky problem.

Though deafblind myself, I do not consider myself an expert on deafblind issues. So much I’ve had to learn on my own simply by trial and error, research, and creativity. I know very few deafblind people, but those I have met have shared a few pointers.

There is a deafblind man I know who is married to a deaf woman. They both sign to each other, and since the man is deafblind the woman will often interpret for him. He has frankly stated, though, that he doesn’t consider his wife his interpreter. When he goes to a formal meeting he hires an interpreter, or SSP (Support Service Provider). What I wonder, then, is how he and his wife balance the issue of interpreting in informal settings? When they go to dinner with a large group of friends, does he simply have a conversation with just the person next to him throughout the entire dinner, or does someone interpret for him what the folks across the table are signing for the whole group to see?

The hard truth is that people with hearing loss are often left out of conversations. It’s a feeling one gets used to. The experience of being excluded from conversations occurs so frequently that it seems to normalize. The deafie can’t spend her whole day complaining about being left out, demanding again and again that so-and-so repeat this or that. No, it gets exhausting asking people to repeat themselves. We’ve got to pick our battles, we’ve got to pick which conversations we want to make an effort to hear, and which we’ll let slip by. The mumblings of classmates before class starts, for instance, might not be considered worth fighting about. The lecture of the professor, on the other hand, most certainly demands to be accessible. Many deaf people accept the fact that they will be excluded from conversations, to an extent. It’s a hard fact to accept, but peace of mind comes with its acceptance. Isn’t that our goal, peace of mind, happiness?

Hence, some in the deaf community argue that deafies in deaf/hearing relationships should simply and graciously accept that they will be excluded in some conversations around the hearing partner’s hearing friends and family. I know I have that secret wish that my partner could interpret everything. Sometimes I get carried away with visions of how he can open the doors to all possibilities. My God, he is amazing, but he is as human as I am. We humans have limits. If we didn’t have flaws, we’d be Gods. (Anyone for a deafblind God?) So it may be that the deafie must just accept and expect some exclusion from conversations with the hearing partner’s social groups. The experience of feeling left out from conversations is a “normal” part of being a deaf person; it is protested and minimized, of course, but there’s a limit.

The experience of a deaf person in a relationship with a hearing person is comparable to an American married to a Russian. The two might communicate perfectly in English, but the American finds that whenever she goes to the Russian’s family gatherings she never understands what’s going on. She doesn’t speak Russian and cannot communicate with her husband’s relatives unless he translates their words into English. The husband is too busy socializing, catching up with old cousins and paying his respects to his great aunts that he cannot stand by his wife the whole time telling her every word everyone says. He would translate now and then, of course, especially when someone is trying to talk to her, but for the most part he cannot translate for her and participate in the socialization at the same time.

The American in the scenario above might choose to avoid her husband’s family gatherings since she cannot understand what all the people are saying. Indeed, some people in the deaf community argue that the partners in the deaf/hearing relationships should avoid mixed hearing social groups. If the deafie is just going to feel left out among the hearing person’s friends, then why bother to hang out with them in the first place?

A lot depends on the minority’s personality: how does the person respond to challenging situations? The American in the scenario above might find it exciting to try to converse with people who speak a different language. She might entertain herself by trying to figure out what others are saying by looking for clues and piecing it all together. Or she might feel content to eat the food, play cards with an old uncle, and just be nearby her husband as he happily socializes.

So a deaf person in a deaf/hearing relationship could try to create a balance by looking for clues in the conversation, finding alternative forms of entertainment in the area, and welcoming any time the hearie finds to interpret some things. It’s just impossible for someone to both interpret and participate in a conversation, and if the company present are primarily friends with the hearing person then it is only fair that the hearie has the right to fully participate in the conversation. The alternatives are few, and as shown above they have their respective flaws, too. The deafie and hearie really need to set aside time to talk over the issue of communicating in mixed hearing groups. Out of love and respect the hearing person must do a minimum of interpreting, but not the extent required to fully include the deaf person. Dealing with these situations is inherent to the deaf lifestyle, and over time one develops strategies for handling these situations. (Hopefully!) If the deaf person is up for the challenge, she’ll join the group knowing she’ll have to seek out alternative entertainment from time to time. But if she’s not feeling up for a challenge, then she could graciously avoid the event and the hearing partner would understand. Communication and understanding is key, and the two would most certainly need to discuss the matter. Like many things in the disability world, they will probably have to pioneer their way through the issues that occur in mixed hearing social groups.

Order of Identities

2009-04-13T23:01:00.000-07:00

An article discussing the situational-ness and contextual-ness of identity got me thinking of how my various identities form and prevent community. I am blind, deaf, female, African. You see how I put blind first? People notice my white cane way before they notice my skin color, gender, or age; plus, they can't see deafness. I find I have a shared understanding with the blind folks that does not extend to people of all the other categories. While I feel affinity for those in the other categories, somehow our shared identity in that category never draws us together the way blindness draws me to other blind people. There are several African students on campus but only one blind student: I went out of my way to meet and befriend that one blind student. The first time an African student's presence was made known to me, I went out of my way to befriend him, too, but it resulted in nothing. I concluded that my disabilities categorized me as an "other" despite our shared heritage, our shared identity as Africans. Why? Is it that, in America, the blind and deaf are thrown in the bottom-most social wrung, far below the Africans? Why do the other African students not make efforts to befriend me, while they make efforts to befriend other Africans on campus? Some identities bring people together, some do not. Apparently, disabilities bring people together more strongly than ethnicity.

Street Encounters with Sighted Strangers

2009-03-08T15:26:00.000-07:00

When people on the street stop me to say how impressive it is that I seldom bump into things--another way they say that is, "Your's so pretty! Do you know that?"--I almost never ever tell them that I can see a little. If I ever revealed to a person on the street that I have a little vision, all my orietnation and mobility training would instantly be disqualified. Furthermore, they would continue to hold the assumption that anyone blind, totally blind, could never walk and move smoothly. One of the main reasons I call myself blind instead of legally blind, partially blind, visually impaired, or low vision is to promote a positive message about blindness. People are convinced that blind people can't do anything, "Aha! You CAN see, you're not really blind. I knew a real blind person could never do that!" So, to promote a positive message about blindness I don't bother to tell strangers that I can in fact see a little. I use my O&M skills extensively and could never do what I do by just relying on my unreliable vision. I use my vision cautiously for a few things and probably use my O&M skills a lot more when traveling.

Have you ever had that experience of people on the street telling you how beautiful or pretty you are? It's bizarre. I always respond with a "thank you" and kind smile, but ever-present in my mind is the fact that a sighted person would never have this experience (except children). I really think the people who do this are simply trying to express their amazement that a blind person can move smoothly through space without crashing. The sight of a blind person moving gracefully through space produces an overwhelming "wow!" that in the English language translates into the words pretty and beautiful. I wonder what the experience of blind men is in regard to this issue. I must say that I am attracted to confident, graceful, and successful blind men. One of the guys I dated was one of these. To me, their assuredness in movement, confidence in gestures, and strength in voice all translate into handsome. But I would never walk up to such a blind man and say, "You're so handsome." Well, maybe if I were using a sexy tone... The point is, it's socially inappropriate for a strange person on the street to walk up to another strange person to say that person is beautiful without seeking romance. I can't remember a man on the street telling me I'm pretty/beautiful, I only remember many different women doing this.

I remember one instance where my boyfriend and I were exploring the Acropolis in Athens. As I walked with my left hand holding his and my right hand working my cane, a woman walking towards us stopped and said to me, "You're really pretty, I just wanted to tell you that." She had a Southern American voice and seemed to be in her late twenties. It'd been a while since I'd had such an experience, and as I said an amused "thank you" I wondered if this strange commentary was a distinctly American trait. I am pretty, in my opinion, but I highly doubt she approached me for that sole reason. I think she was impressed to see a blind person traveling, a blind person far away from home...she probably heard me talking in American English to my boyfriend, and despite his presence somehow still found the mirage of a blind American in Greece to be almost unbelievable, or even pretty.

I would enjoy one day doing a cross-cultural study of sighted attitudes towards the blind. Do strangers tell blind men that they are handsome? Do sighted non-Americans tell blind people that they are beautiful/handsome?

Biking Blind

2009-02-24T18:23:00.000-08:00

For many years I would ride my bike on the sidewalks and streets of my neighborhood. Sometimes I would ride with my father or sister, but often neither of them were available and I was forced to either not ride at all or ride alone. I usually chose to ride alone, gliding along at a moderate pace. Occasionally there would be a close call that would scare me for a few minutes, but nothing dreadful ever happened. One day in high school I mentioned to my orientation and mobility instructor that I enjoyed riding my bike alone around my neighborhood. To my surprise, he told me that I was unfairly putting pedestrians and other people in my community in danger. I knew that I was putting myself at risk, knowing the dangers of trusting my limited vision, but I had never even considered the fact that I was putting other people at risk. I was stunned by my thoughtlessness. I have pretty much stopped riding bicycles without a sighted friend.

The NFB and the Deafblind

2009-02-09T23:35:00.000-08:00

We must be very careful in choosing our self-sacrifices. In many places around the world, a blind person might choose to just stay at home because he knows that if he stepped outside on his own he would cause his family and neighbors much stress. The man would do it for the greater good, for the majority sighted people around him. I happen to be reading about Japanese culture at the moment and they are very big on self sacrifice. I find that if I were to refrain from requesting all the things I would need to be successful in life, such as FM Systems, braille books, etc, it would not be a positive image for the NFB, I would simply become another un-productive statistic. I've also heard of deafblind folks holding up cards to request passerby help them cross streets. Since I absolutely cannot hear traffic patterns reliably, then I suppose I could have chosen to hold up signs instead of asking for a chirping signal. For me, the greater freedom offered by a chirping signal was preferable. I really appreciate that you've revealed to me that chirping signals might actually make crossing streets harder for some deafblind people; that's a factor I was totally unaware of. As far as images go, I certainly did point out to the city technician that my hearing loss prevented me from listening to traffic patterns, as a solely blind person might.

A girl made a youtube video criticizing the NFB. Many of her claims were untrue and uninformed. I suspect, though, that some of her frustrations might stem from the common knowledge of the NFB, and that knowledge seems to have a strong tendency to cast the blind person as belonging to a homogeneous population. There are subdivisions like the deafblind Division, but that is not the voice most people hear from the NFB. To be honest, I don't know about the activities of the deafblind division, I don't know of any to speak of. A year or so ago I read in the news of the NFB's protest against making currency with tactile identifications. One of the NFB's arguments was that there exist machines that "speak" the denomination of a bill. If the deafblind division ever mentioned that the deafblind cannot use such a machine, their voices were not in the articles I read about the issue. By bringing this up I only mean to provide an example of how the NFB might not even represent its deafblind division, or the other deafblind organizations; I do just fine with folding bills, by the way, and have successfully been employed doing tasks involving money and cash registers.

I like the NFB, it's a fantastic and incredibly supportive organization. All I mean to convey is that I realize the NFB cannot always represent me because its intent is to represent the majority of blind people. I totally understand this, though the process of understanding and realizing this has been a little unsettling.

The NFB Standard Do Not Apply to Every Blind Person

2009-02-09T19:43:00.000-08:00

A few months back I called the city's Transportation Department requesting that they place chirping signals at a particularly difficult intersection near my house. Today, finally, the city sent someone who actually did just that! I was amazed at how quickly the man was able to set up the chirping signals, and how little work it required. Reflecting on the whole situation, I wondered if maybe I could start a volunteer group to set up chirping signals at the intersections around the city. Then my boyfriend said, "You know what the NFB [National Federation of the Blind] would say?"

"Oh shit," I was suddenly hot and took off my hat. I felt momentarily stressed, ashamed, panicked. I knew exactly what the NFB would say. The NFB would say chirping signals are not necessary, a properly trained blind person can safely cross the intersections by listening to traffic patterns. Suddenly my plan seemed stupid, and I felt guilty for asking the city to set up a chirping signal at the intersection near my home.

After some thought, after talking it out with my boyfriend, I realized that the blind population is too diverse for the NFB to dish out standards for every single one of those blind people. I attended the Louisiana Center for the Blind and in some ways my confidence in crossing streets shrunk from that experience. I am blind, but I'm hard of hearing, too, and hence I cannot trust my ears to help me get across streets. I use a combination of vision and hearing to cross most streets, but some streets I simply do not feel safe crossing. The intersections that cannot be tamed by my vision and hearing are those for which I want the city to install chirping signals.

My point is that the NFB should not be treated as law by all blind people. I've had to pick and choose which standards of the NFB to adopt, and which I should discard because I am hard-of-hearing. There are other blind people with multiple disabilities that probably experience similar frustrations with the NFB. I noticed that the girl in the youtube video who rants against the NFB has a partial facial paralysis. I strongly feel that the NFB should more vocally acknowledge the non-homogeneity of the blind population.

A state of becoming

2009-02-09T15:21:00.000-08:00

I feel so alone sometimes because I don't have people I can point to and say, "If she can do that, so can I." The deafblind are such a small population scattered across the world, and all of them have varying levels of deafblindness. How can I find someone with my exact hearing loss and blindness so that we can finally write down in stone what we can and cannot do?

My potentials, my abilities, are like the Americas three years after Columbus discovered them. Known but unknown. My potentials are known and unknown, in a constant state of becoming, in a constant state of discovery. I strongly believe that at age seventy, if I ever reach such a wise age, I would still live in this same state of becoming.

No one with my exact abilities to be my role model, no way to fairly compare myself with the abilities of those around me, those who are ablebodied and disabled...It's a never-ending frustration and a never-ending adventure. I wouldn't mind if it felt like an adventure all the time, a fun exciting adventure.

In one contest for the blind, one of the considerations of this contest is a blind traveler's independence from sighted assistance. The Helen Keller National Center teaches the deafblind how to travel, but the methods of travel and the abilities of the traveler vary depending on the amount of vision and hearing of each individual. So, the travel skills of one deafblind person are difficult to compare with another's, unless they both have the same exact amount of vision and hearing. The National Federation of the Blind's (NFB) training centers, on the other hand, teach that most blind people can cross the most complex intersections completely independent of sighted assistance. For those with hearing loss, the NFB's expectations cannot apply to them. Thus, the "idnependence from sighted assistance" of the deafblind cannot fairly be compared to that of blind people without hearing loss. Lacking a community to compare my travel skills with, it is difficult to determine the extent of my travel abilities. Perhaps there is more in the world that I can do, perhaps there is a way for me to cross a tricky intersection in town. I cannot be sure since there are few people with my exact abilities from whom I could learn new techniques. So without a definitive model to follow, my abilities and potentials are in a state of "becoming." I'm continually discovering and learning the boundaries of what exactly I can and cannot do.

So, in that contest for blind travelers, I wonder how the committee would judge the travel skills of deafblind travelers in comparison to blind people without hearing loss.

Deafblind Dancer (sometimes)

2009-02-08T00:09:00.000-08:00

Just back from contra dancing, something I haven't done for 3 months. Again, the dance floor was occupied by mostly people over forty, many way past sixty, and I just felt so out of place there. I felt like the black sheep, the only one who wanted to twirl like a tornado when the caller shouted, "spin your partner!" I love how the other dancers are so kind to me; there's usually someone at each dance who comes forward and asks me to dance with him. "But I am young and twenty..." and where's the gang of my age?

When I first started dancing there were bus loads of students from two different colleges at the contra dance center. I danced equally with folks on both sides of forty, and I thoroughly enjoyed myself. Overtime, the college students stopped coming. I think today I was one of only two college students, and the other one, my boyfriend, wasn't dancing due to a recent bike injury.

Nearly every week before this I've wondered, "Will I contra dance this Saturday?" For three months that answer has been "no." There are several reasons why I generally feel apprehensive about going. During the week I endure a stifling environment where I try to listen to professors and students in my classes through a headset/microphone setup, and that energy of listening so carefully stresses me out. It not only drains my energy, but it causes me to be wary of able-bodied people to whom I have to explain my hearing loss and blindness. So when weekends roll around I find myself wanting to avoid ablebodied people. Nearly every Saturday I go downtown for dinner with my boyfriend, the only ablebodied person I feel totally safe and happy around. So though I enjoy dancing, I find that I'd much rather relax and stay away from ablebodied people, just enjoying the company of my boyfriend.

Walking around the dance floor looking for a partner, I felt exposed and vulnerable. I couldn't really see the people outside my six-feet visual radius. Some of the people who crossed my vision had un-identifiable genders. So, I mainly exposed myself, made it visually clear that I was looking for a partner; I rarely ever walked up to someone and asked him to dance. I wasn't a wallflower, maybe a centerflower. My technique worked 80% of the time, which I consider successful. However,my 3 months long sabbatical from the dance floor made the experience of placing myself in the center of the floor looking for a partner quite embarrassing. The few times when no one asked me to dance I merely walked back to my seat, pushing embarrassment aside to order myself to be patient.

On top of that, there is also the awkward moments after someone asks me to dance. He might start small talk, but I find the mumble-y small talk so hard to hear. Of course I politely ask, "Could you say that again?" But in my mind I'm saying, "Shut up! I just want you to dance with me, not talk to me!" If I"m lucky the music starts quickly and the conversation ends right there. The poor souls of course don't know I"m hard-of-hearing. In cases where I have to ask someone to repeat himself more than twice I will let them know of my hearing loss. Sometimes, fatigued and annoyed, I'll just smile and nod to whatever they're saying. When the music is blasting and they're talking to me while we're dancing, I'll nod and maybe smile, too.

With all these factors to consider, my next visit to that dance floor will be in a long time. Perhaps I'll seek out a dance floor with younger people, but the ablebodied factor will still be there. There are days when my mood soars above the clouds, when I feel eager and happy to put in that extra effort to socialize with the ablebodied. Frequently during the busy school year those days are too few.

When the blind lead the blind, it's exciting!

2008-11-26T22:50:00.000-08:00

I got an e-mail from a blind friend in Asmara, Eritrea saying that blind people shouldn't marry blind people because "if the blind lead the blind, they all fall into the ditch." You bet I had a long response for him!

Whenever I'm lead by a blind person, I feel a rollercoaster-like thrill. On a rollercoaster with my seat belt fastened, I know I'm safe and sound even though I'm flying through the air at incredible speeds and momentarily thrown upside down. The thrill of being lead by the blind comes from defying the old Christian proverb: "If the blind lead the blind, they all fall into the ditch." As a blind person leads me through unfamiliar territory I hear a revolutionary chorus of "Yes we can!" There are people out there who think I'm crazy to allow myself to be lead by another blind person, and I imagine sticking my tongue out at all those fools. What nonsense! The blind would just feel the ditch with their canes and then use their brains to avoid it. That old proverb speaks only of the non-blind's fear of blindness.

My most exciting, most memorable experience of the blind leading the blind took place in Asmara, Eritrea. That summer my family was visiting relatives in Asmara and I decided I wasn't going a whole summer without reading a book. So, my mom and uncle drove me to the school for the blind there and I borrowed braille books from their library. They had quite a few interesting books at that library, from wild romance novels to a children's book on the Lewis and Clark Expedition. I found myself going to that library regularly, and started insisting that I go on my own. So, finally, my uncle taught me how to take the bus from our house to the school. That worked out well, so I did that for a while. After checking out some books one day, it just so happened that four blind students were leaving the school the same time I was. They said their home was in the same direction as mine, and suggested that we travel together. They were interesting people, so I was happy to have the chance to get to know them better. They said we could either take the bus or walk. Now, I'd walked home from the school only once before, and that was with my sister. I absolutely did not trust myself to cross the busy streets of Asmara. I was too inexperienced. But the students seemed comfortable with the idea of walking, and I could already see the adventure up ahead. "Yes," I told them, "let's walk."

So down the street we walked. The sidewalks had huge cracks and broken pieces everywhere, so sometimes we walked on the edge of the street instead. Two of the students were partially sighted, and the other two had their arms draped across the shoulders of the partials. One of the students had a cane, but he was so tall and the cane was so short that it can't have been of much help. I had a cane, too, and walked beside the group, chatting. I feel excited when the blind lead the blind, but there, in Africa, was a whole other story. I felt slightly daring, slightly reckless, like maybe my seat belt wasn't fully fastened. Asmara is full of crazy drivers, and you can bet your bottom dollar that the few streets with traffic lights did not have any chirping signals. I trusted the four blind students to have a strategy for getting across those streets, and they sure did have a strategy.

There biggest technique was a can-do attitude. Fearless, they approached each street with soldierly determination to get across. As expected, they used their hearing. At one street crossing with four lanes of buses, donkeys, trucks, and cars, they stood at the edge of the street just listening for a while. I stood half a step behind them, curious and amazed. Then they started to cross. Maybe they heard a break in the traffic, I can't say since I'm partially deaf. I started to cross with them, too, but at their heels. I admit, it was a bit scary. I don't think my sighted sister would have dared to cross there either, she and I had taken a slightly different route. Halfway across the street, a sighted man came from the opposite side and lead us across the rest of the way. We got across! It was chaotic, but they got the job done. They used a combination of hearing, sighted help, and unhesitating willpower. I loved them; I laughed and joked and thoroughly enjoyed the rest of the walk home.

Now I don't mean to mislead you into thinking that blind people feel a bit scared when being lead by another blind person. Pretty much all of my experience of being lead by the blind in the US has not been scary, often not even exciting. When I go rock climbing or hiking with just another blind person it does feel exciting in a rebellious way, but I feel completely safe because the other blind person and I share the same strategies and techniques for getting things done. Since I grew up in the US I had no clue as to how blind Eritreans crossed Asmaran streets, and that's what made that experience a bit scary.

That walk was the most amazing lesson from the blind of Asmara. Regardless of whether they used the safest technique, that time they didn't fall into a ditch, and they didn't get hit by a car or a bus or a donkey. They're still alive to this day, still crossing streets in style.

A Guide Dog or a Pet?

2008-11-22T22:23:00.000-08:00

The evidence leans towards a pet. I think it’s a pet that I really want, not a guide. I don’t think I really want to be pulled all over this city by a dog that everyone interprets to be my hero and best friend. All the bloggers I’ve come across so far who talk about their guide dogs insist the dog is their best friend. If I were to get a guide dog, my boyfriend would still be my truest/bestest friend. Yes, bestest. My guide dog would only be a tool, like my cane, and though I would probably grow to love the dog, I would never hold the dog above the important humans in my life. You see why I’m probably not a guide dog candidate?

I've also noticed that guide dog users get a lot of attention, but people almost forget about the blind person altogether while they'll remember the dogs name. Just imagine, every time I walk down the hall people would be like, "Hi Spot!" "How are you Spot!" "Good boy, Spot, take good care of Lidia now!" It would drive me crazy. I'm a stage kind of a girl, I love attention, and I think I'd get jealous of Spot! The dog would bask in heroic praise, and I would be pulled along two feet behind him like his oversized duffel bag. Perhaps I'm being too dramatic now.

The main reason I even consider having a dog is to enhance my safety while crossing streets. I’ve had excellent Orientation and Mobility training. I’ve been crossing streets for years and, obviously, am still alive. There have been a few “oh my god” moments where I didn’t see something until the last minute. It happens to able-bodied people, too. But if a dog, a specially trained guide dog, would decrease the number of dangerously close encounters with roaring metal monsters, then why not get one?

I love dogs. I’ve had dogs all my life. They’re cute, charming, and their loyalty can be breathtaking. I’ve never been fully responsible for a dog, though. My parents were financially responsible for our dog. If I ever forgot to feed our dog, someone else would remember. My dad did most of the feeding, really. That stuff doesn’t faze me, though, that’s just the small stuff that I’d have no problem incorporating into my life. It’s really the financial aspects of having a dog that scare me. There are the regular dog food costs and shampoo and flea medicine costs. Those I could probably handle. If the dog were to get sick, though, if the dog were to need surgery, then I would be in big trouble. I simply attend college right now and use the monthly disability payments from the government to cover rent and food. There’s no way I could cover veterinary care for the dog. Perhaps I could ask my parents to back me up if my guide dog were ever to get sick? Perhaps. It wouldn’t feel quite right, though, and I’m not sure how they’d feel about it.

I have done a whole lot of research on guide dog schools. To my dismay, I could not find a comprehensive comparison of the guide dog schools with students’ ratings. You know how colleges are rated by a million different sources? Well, I couldn’t find anything like that for the guide dog schools in the US. The most useful source was a survey by Guide Dog Users, Inc that was like a one-stop for information on 13 guide dog schools in the US. http://www.gdui.org/schoolsurvey.html The GDUI survey made it easier to compare the guide dog schools, but it wasn’t giving me the opinions and reflections of students who attended the schools. For that, I asked a bunch of my friends with guide dogs to comment on the guide dog school they went to. I also looked around for bloggers who posted about their experiences at the various guide dog schools.

I found good and bad news. The good news was that Guide Dogs for the Blind, a guide dog school in the West Coast, offers students yearly stipends to cover veterinary costs. So if I were to get a dog from them I wouldn’t need to worry about what would happen if my dog became sick. The bad news? Well, you see, a few sources kind of imply that the quality of dogs from Guide Dogs for the Blind is deteriorating a little. I have myself met dogs from Guide Dogs for the Blind that had behavioral issues. Now that could just be due to the handler’s untraining of the dog, which definitely happens sometimes. Additionally, I have heard glowing stories about The Seeing Eye in New Jersey. I’ve come to believe that the quality of the dogs and the training at The Seeing Eye is far superior to Guide Dogs for the Blind. To my dismay, The Seeing Eye does not help students cover the costs of veterinary expenses. One thing that makes The Seeing Eye stand out is that it is the only school that allows you to own your dog the minute you graduate. Other school will let you own the dog after two years, while some schools will never let you own the dog and can take the dog away if they think it’s being abused or not being properly used as a guide. I don’t care about the ownership thing since I love dogs and would never abuse them. Also, I am the type of person who would return a guide dog instead of just keeping it around as a pet if it turned out that I did not want to use the dog as a guide.

So what do I do? Do I go to Guide Dogs for the Blind and get a decent guide dog with a yearly stipend to take care of it? Or do I obtain an outstanding Seeing Eye dog with the risk of not being able to afford to pay for vet costs if the dog were to get sick. I want a Seeing Eye dog, but I cannot be irresponsible.

Perhaps my unwillingness to be financially responsible for a dog is a sign that I’m not ready for a dog. I kind of want a dog the way I did growing up, just a dog and no strings attached. The strings were for my parents. I don’t’ want to be dependent on my parents anymore than I have to. By the way, my parents are in a different state. So it would be all on me, and though I love the image of a beautiful German shepherd running around my living room, I’m just going to take the responsible route and not have a guide dog. I don’t even seem ready for a pet dog. How sad. This feels a little like planning parenthood.

Masks and Mountains

2008-11-20T00:52:00.000-08:00

Entry in the Disability Blog Carnival #50

I am, really, many things. My boyfriend has come the closest to seeing all of me. My personality, my voice, my manners adapt and change, hide and reveal, depending on where I am and with whom. Most people just see one side of me, probably because I do not trust them to respect and accept the rest. I am a closed clam when with distrusted able-bodied folks. I am a sheep when with authority I wish to please. I am a dolphin among blind friends. Among family I am a lion cub that nearly fails to keep up with the pride. At home, with my boyfriend, I am a clamsheepdolphinlioncub. One facade for one environment, a different mask for another. Not really masks, though, because the masks are me.

Among the able-bodied a shell sneaks all around me, keeping my thoughts hidden. I do not trust them to understand or even respect those thoughts, so among those I don’t count as friends I unconsciously retreat. I am a clam.

Occasionally, in environments like classrooms my little pearl manages to display a glitter through some crack in the shell. While I am mostly absent, those pearly peaking moments remind the able-bodied creatures of my presence. I sit among them, mostly silent and invisible; but when burning curiosity and the class participation grade compel me to speak, I surprise all with my strong articulate voice. Did that sound really come from the clam, they wonder. I speak louder than the professor, in a clear high pitch voice, just the type that I hear best. I do not need to use such a voice for a class of hearing students, but I fear my voice being inaccessible to someone, as so many voices are for me. My voice, my powerful voice, hints to the others that perhaps I am not only a clam.

They could never conceive that I am a dolphin. Mingling with trusted friends, able-bodied and otherwise, I glow with an immense store of jubilant energy. I am hot, sexy, witty, attractive. Among blind friends there is a liberating feeling of respect and acceptance that frees my spirited soul. A sunflower, an African lily, a soft and curvy miracle of joy and titillation. My exuberance infiltrates those around me. Like once, when I urged Jim to enjoy the thrill of a playground slide, he obliged me, relishing an experience missed for over fifteen years. The fire of gleefulness flies right back to me from a friend, as she challenges me to a competition on the monkey bars. We take turns swinging from bar to bar, teasing each other for almost forgetting the art. Our ages ranged from 20 to 30. That midnight frolic at the School for the Blind was my idea, and boy did we have a sensational time! I am such a dolphin among friends.

Among family, I am not disabled. What I am, then, is a little slow, a little retarded, a little confused… Among family, I am often angry. I hate the denial of my disability. I prefer my deafblindness, I prefer who I am, than the retardation they prefer. I remember one agonizing evening my mother, younger sister, two aunts, and an uncle sat in our kitchen. I urged my uncle to tell us an African story, and he began telling one in Swahili. I stopped him at one point to ask a question, “Who’s David?” My sister answered, “The donkey. Weren’t you listening?” Before I could respond my uncle declared, “Wow, your sister knows Swahili better than you do! Sarah, you’ll have to teach Lidia the language.” I felt so enraged that I stopped listening altogether. My mother knew I spoke Swahili way better than my sister, but to explain that she would have had to tell her brother that I am hard-of-hearing. My uncle knew, somewhere in his mind, but he would never have said it aloud because a disability in African culture meant you were less than human. I, too, in my fifteen-year-old confusion could not bring myself to argue against the stupid conclusion, because I, too, couldn’t point-blank say “I actually know Swahili better than my sister, it’s just that I’m hard-of-hearing and didn’t hear you say donkey.” So you see, among my family, I am beneath my younger sister, retarded and infantile and non-disabled.

Surprisingly, there is another place where I am not disabled, this one, though, is magical. When I do-si-do and swing my partner on the dance floor, I am at once a dolphin, but something else, too. The perfect word that would describe just exactly what I am on the dance floor refuses to come to mind. Maybe, perhaps, that word is…me? I feel so alive when contra dancing. I communicate through my body, I read others through their hand signals and movements. If I mishear something, no one thinks I’m deaf, there’s loud music after all. I can see the bodies moving, and I joyously circle and swing and ladies’-chain with them. I feel blissfully anonymous. I feel whole and happy, like an actor on stage who, for once, performs the act the audience has been waiting for.

Some look at me and think
“How many obstacles she must overcome!”
“How many mountains she must climb!”
“She will never.. How many impossiblities she could never overcome.”
So I am a mountain, then, like “The Great One” Denali in Alaska.

There’s more. I am Dancing Denali.

Heavenly Madelines

2008-09-26T10:22:00.000-07:00

When I met my boyfriend he didn't know what a madeline was. I was surprised to learn that there was actually something very non-African that he didn't know about, yet I knew about. Madelines at the time seemed so mundane to me, like donuts and chocolate chip cookies. Through him, I realized that the cookie of my childhood is somewhat of a delicacy.

I grew up on madelines. Every weekend I had at least two madelines. My father has a favorite coffee shop that is a fifteen minute drive from our house. I always resisted going with him because I felt totally bored. While he chatted with his friends over coffee I merely sat by him and daydreamed. When I was a little older, like eight, my sister and I would play around the coffee shop, going into the elevator and making up stories about the people around us. At an even older age, like ten, we were allowed to stay in the car and listen to RAdioDisney while he watched kept an eye on us through the window of the coffee shop. The time I spent at that coffee shop was time stolen from my cartoons. For compensation, I was given madelines.

Yes, it was a French cafe that had these french cookies, but even when the cafe did not have them we could get them from a bakery on the same block. Thus, I always felt the madelines were as common as peanutbetter cookies or brownies. Madelines were so central to my childhood that I was completely shocked that my boyfriend had never heard of them, that not a single coffee shop, not even the Starbucks, sold them in his Alaskan town.

Soft and moist, shell-shaped, yellow morsel of sugar, vanilla, and butter. I was given two each time we went to the French cafe, and they lasted for ten minutes. Cherishing every morsel, I nibbled it around the edges, slowly moving into the big moist globe in the middle. Every bit was wonderful, almost worth missing the cartoons, ALMOST. My sister learned to do the same thing, otherwise if she finished her madelines before I did she would have to endure the torture of watching me devour mine. I love madelines.

So, I set my boyfriend on a mission to find madelines. The city we live in doesn't have a French Cafe. We called countless coffee shops and bakeries asking for madelines. At last, there was one starbucks in a mall that sold them. AT last, he experienced the miracle of madelines. We took four packages home, each ontaining three heavenly madelines.

Raised by immigrants, I don't consider myself very American. There is still so much of the American culture, the American language, and especially American food that remains a mystery to my parents and I. So, naturally, I was utterly amazed that there was something American that I understood better than my American boyfriend. It was I, the foreigner, who introduced him to the wonders of madelines.

Mice

2008-09-23T20:42:00.000-07:00

Hysterics have never come my way, even when I lost my job as a tour guide because I wasn't a resident of that state, I still maintained my control. The repulsion I feel towards mice falls on the border...

Sam was devoted to me. Whenever my mom raised her voice in anger as I stubbornly refused to do whatever chore she asked, Sam would position his self between us and growl at my mother. He never hurt her, but she showed enough hesitation and fear so that Sam thought he got me off the hook. He was very gentle with mys sister and I, never threatening us regardless of what we did. Many times I'd spy him chewing on something and would immediately put my hand between his jaws to get it out. Legally blind, I could never tell what it was before I grabbed it. Occasionally I retrieved bones out of his mouth, bones with bits of meat still clinging to them, and he wouldn't so much as growl at me.

One afternoon I stepped into the backyard to play with him and found him sniffing and snapping at a gray blur on the ground. Could it be a rag? I bent down and touched the blur. My hand jerked back as my feet quickly retreated. A mouse! I felt fur, and I felt movement. "Sam, no, get away!" I pulled him inside by the collar and closed the door.

My mom had been standing in the doorway. "I saw that," she said, with horror and amusement both in her voice. She's one of those who will scream when she finds a mouse in the house.

That was years ago, when I was around 10. My next mouse encounter was far more recent, like, 10 days ago.

Early one morning I wake up and go to the bathroom. In the bathroom I hear a high pitched noise, like an insect, but merely assume the sound was coming from outside. I then go into the living room and begin another day of schoolwork. Not to long later my boyfriend taps me on the shoulder, "There's a mouse in the bathroom." Oh My God! Is that what I'd heard? I could have stepped on it! I can't believe I was in a room with a mouse, a loud mouse, and didn't know it!

We both go into the bathroom and he points out the gray blur that indeed is right in the middle of the bathroom. How did I miss that? How did I not step on it? So many repulsive thoughts, including that it might get into other parts of the house. "OK, let's use a trash can and cheese and get this thing out of here." The mouse turned out to be seriously injured, so it moved about 2 feet an hour. In the part of the bathroom above the sink the ceiling pipes are exposed, and we concluded that the mouse had fallen in somehow from the ceiling, which explained the injury.

We got rid of that mouse easy enough, but now every time I go into that bathroom I pause for a moment to carefully listen for a particularly unforgettable squeak. Then I exert enough control over my mind to block out the picture of a squeaking fur ball with dirty claws falling on me as I brush my teeth...No, of course not.

A conspirator in the oppression of the deafblind

2008-09-22T22:21:00.000-07:00

Militantly direct and honest, I shattered the shield and aura of normality that protected Greg from people like me. Thoroughly surprised, I was unprepared to deal with him. I dealt with him the way I would like to be dealt with: honestly, openly, directly. Old Greg is like a little girl who insists on pretending she's a princess with her own pretty pony in her own perfect world. Only, adults would tell such a girl that she's not being realistic. Rather than being scolded for his outrageous behavior, his insults, his refusal to do his professorial duties, Greg's colleagues refuse to pass judgement on him and told me they'd try to find me another instructor...

Greg wanted me to sit in his class like a good ablebodiedwhitemale student and pretend to be just that. If I learned, great! If I wasn't learning, well, he wasn't even sure a deafblind woman could learn mathematics anyways... During class he frequently pointed to equations on the chalkboard that I could not see and said things like, "multiply this with this and bring that over here..." Adding to the situation my deafness, it's really not surprising that I wasn't learning anything in class. The first two weeks I spent hours everyday studying the textbook to learn what I missed in class, and then more hours to do the homework on top of that. I resented Greg for not being my professor, I felt angry that I had to spend so much time outside of class to learn what everyone else learned in class. The situation was dreadful, so I told him so.

My "discussion" with Greg was very intense, resulting in feelings of animosity for both of us. He hated me for asking him the honest question of whether he was responsible for teaching me in this course. I despise him for not owning up to that responsibility, after all, I pay an enormous sum of money for him to instruct me at this private college!

I shared details of the encounter with my advisor and the Disabled student Serviced, and I am thoroughly disappointed in them for not passing any judgement on Greg. They're working on getting me a tutor for the class, and that's all.

I have another math class, and these classes are generally more productive. There are still problems. For instance, the other day the professor spent half the class showing the students a mathematical game on the computer. He did not provide a description of the game for me, and I could not see it, participate in it, or learn from it. In short, he was wasting my precious minutes. The memory of Greg lives, and fearing a similar encounter with this other professor, who knows most if not all the details of the Greg encounter...I just sit and pretend to be a good abledbodied white student, no different from the rest.

So I am a conspirator int he oppression of folks with disabilities, especially the deafblind ones. I'm ashamed, scared, and hate both of these professors. I value relationships with my professors, and I long to have wonderful math professors. When I struggle in math, I feel so alone, feeling the contempt of these men whenever I dare ask a question...

It's Disrespect not Culture Clash

2008-06-10T21:16:00.000-07:00

Anthropology may really be my true calling. I have taken a few anthropology courses in college for the simple reason that I enjoyed some of the readings, but now I'm beginning to think that my mind naturally works as anthropologist's.

I'm living with my boyfriend's family right now. They're white Americans and my family is black Africans who still hang on to their roots from Eritrea. I'm in an interracial relationship alright, but the issues I struggle with have nothing to do with skin color and everything to do with culture. The matter is complicated even more when we add to the confusion that I am hard-of-hearing. When I endure a frustrating social interaction with my boyfriend's family, how much of it is culture clash and how much has to do with my disability? Yesterday the issue really upset me.

My boyfriend and I picked up his cousin Amy from work and all three of us were riding home in the car. She talks incessantly to my boyfriend, stopping only to breathe and pick up another topic to yap about. I can hear every word, I'm in the front co-pilot seat and she's in the back behind me. I occasionally chime in and ask her something. It may be my imagination, but it feels as though her end of the conversation becomes choppy, slow, carefully-spoken whenever she directs the flow of talk to me. Compared to the incessant flow of talk she sends to my boyfriend, the way she talks to me feels condescending. Sure, I'm hard-of-hearing, but I could hear her in that car just fine! Except for our voices, it is quiet in the car, a small enclosed space where sound travels really well. I understand that it takes people a while to figure out how to talk to me, but God, I've been living in the same house with Amy for two weeks! By nature I'm very patient, but even I have limits, too! As long as she talks to me like that, I will not be able to enjoy talking with her. Conversation becomes fun and lively when both parties are treated as equals, which is not the case when I speak with her.

Then, as the three of us chat and ride home in the car, Amy does something that's been getting on my nerves all week. She mentions that she should visit Alice to say hi sometime because Alice is her godmother. “Someone you like?” I ask her. There's a pause, and then she firmly states, “she's my godmother.” After this, I dislike Amy even more. If this were an isolated situation, I would of course let it slide over, probably wouldn't even notice, actually. However, I've experience this brand of dis-acknoledgement many quite often, including that very day, from Amy and my boyfriend's parents. By responding to my question with “she is my godmother,” Amy indicates that she thinks I did not hear the part of the conversation where she said Alice is her godmother. Amy assumes that I would not ask whether she likes Alice if I know Alice is her godmother, which lead Amy to the conclusion that I didn't hear her say that Alice is her godmother. Arrogance and disrespectful-ness are my main explanations for Amy's consistent pattern of assuming that I mishear her every time I say something she doesn't understand. Such an attitude and response to my hearing loss implies that SHE would NEVER mishear me, that she would NEVER misunderstand me, and that I would NEVER have something new and different to say.

Besides, what a boring friend I would be if everyone understood everything I said and my tone and volume did not change so that everyone always heard everything I said, too. I would be such a dull, bland, indistinct person. I would lack creativity in thought, speech, expression. I would be an open-book, a well-trained dog, a shallow lady who surrendered her life to society.

Put in this perspective, I hope it has become clear why Amy's response, or lack of response, to my question aggravates me so much. It is not as though I was pining for her friendship and this was the last straw that turned me away. After three days of living with Amy I figured out that she wasn't friend material for me. The issue is much more serious than friendship. I will be living with Amy for the rest of the summer and do not want to endure anymore of her disrespect.

Wait, I'm an anthropologist. What if Amy is not being condescending, but rather is merely communicating differently? What words could have been between the lines?
Me: Is Alice “Someone you like?”
Amy: Of course she's someone I like, “she's my godmother.”

It's very possible that the unspoken words in that short conversation were the ones outside the quotation marks above. I would not have been irritated with Amy if she had said, “Of course I like Alice, she's my godmother.” Amy's style of communication may depend heavily on indirect communication, metamessaging, and basically expecting the other person to catch her unspoken words. However, I come from a different culture and would not necessarily share her many assumptions. Furthermore, I'm stigmatized as the hard-of-hearing person, which would lead me to assume that her unspoken words were, “Did you hear me? I said “she's my godmother.””

As I said before, if this were an isolated situation I would not have thought twice about it. The incident is turned into an incident solely because it is not an isolated situation. My experience with Amy has a history of her dis-acknowledging what I say through the simple repetition of what she had said. So whenever I say something that she can't understand, she just repeats herself because she thinks I'm responding to something I misheard.

I do mishear people, but people should not EXPECT me to mishear them. Even when a person suspects that my comment doesn't make sense to her because I misheard what she'd said, I'd much rather she acknowledged the comment rather than ignoring it and repeating herself. I want people to listen to my words, to acknowledge my words, in fact. I do not want to be brushed off as the confused little deaf girl every time I say something that someone doesn't understand.

About half an hour later as we're all sitting in the kitchen eating lunch, I explain to Amy that I would much rather she acknowledge my statements, even when she thinks I misheard her, and just ask me to explain myself. I indicated that I want her to approach my comments as coming from an intelligent individual, rather than from a confused person. Knowing that I'm hard-of-hearing and expecting me to mishear everything are contradictory attitudes, one good and one bad. Amy clearly does use a lot of indirect communication, so I need to somehow instruct her to not have the unspoken words, “Did you mishear me again?” beneath every comment she directs to me. I really feel that question is under every spoken statement she says to me, and boy does it make respect and good conversation impossible.

A Good First Day

2008-06-05T16:31:00.000-07:00

So, I lived my second first day of work. The first one was last Friday when I started my job at the fitness center. That first day was really stressful. I had so many things to memorize, like how to use the cash register (which I still struggle with), the credit card machine, procedures, prices, etc. I barely survived the four hours of information overload!

This first day of work was a lot easier. Working at a summer childcare program doesn't have half as much new-employee-training. I spent a lot of the day playing Connect Four and watching the kids. There were some really nice kids! This one boy "helped" me play Connect Four. I had to be sure to beat him a few times just to make sure he knew I had some intelligence of my own. He was really, really good about talking into the microphone of the FM System and telling me when other kids were asking me if they could go to the bathroom.

I like working with kids. It's fun to see the wildness around me. Recess was fantastic with all the kids riding bikes, running around, and playing ball. During recess I walked around and talked to a few kids. It's really hard to hear the kids because they talk in such little voices. I mean, I gave them a talk about how to communicate with me but they still had trouble raising their voices. Teachers and parents have drilled into their heads to use "indoor voices" and speak softly. Now a new adult comes in and asks them to talk loud? Huh? I told them to use their playground voices when talking to me, but it's hard for them. When I started using the FM System things were much easier, because the FM System doesn't require them to raise their voices, it only requires them to repeat their selves a few times, which they all seem to be OK with.

My supervisor is wonderful. Patient, helpful, respectful, considerate, and very, very kind. I'm very happy to be working with her. I can even almost say I feel comfortable telling her some situations just are too chaotic for me (like lunchtime when 60 kids are all in the gym eating/shouting/playing).

I can't say much about my coworkers because I interacted very little with them. I suspect they will not be as respectful and considerate as my supervisor, but I never did have high expectations for them coming into the job, most people are respectful only to a minimum degree.

So that's my first day at the childcare program. I'm kind of glad that I don't work there all day because that would be so stressful! I can just see myself getting tired of the kids after four hours. So much energy is required on my part just to communicate and understand what they're saying. They might even get sick of me, too, after four hours. So in that sense, it's good this is a part-time job.

On the other hand, I wish I were making more money. At the end of this summer I will only have about $2,600. I want to be able to go somewhere exciting and fun with my boyfriend next summer. Oman, Iran, and South America are among the places I want to vacation at next summer. My earnings from this summer sadly won't make that possible. We may end up waiting another year...how sad.

I'm happy to have work, though, and two jobs, too! I was starting to think I was absolutely unemployable. Just consider, in desperation I applied for a housekeeping position at a hotel, and a bell hop position at another hotel, and I was not even asked for an interview for those positions! I called them incessantly, demanding a response. One hotel tells me they're full after two weeks of calling them, the other hotel has not given me a real response, the manager just said he'd call me back, but never did.

Significantly, the two jobs I currently have were attained through social networking, all thanks to my boyfriend's mom. In that case, I may be doomed to unemployment next summer since I plan to stay in Portland where my boyfriend and I do not have any relatives or strong friends. Hope I shall have, though, along with my best effort. Maybe, just maybe, my skills will pay off. For now, I'll just aim to get through this summer nicely.