Asking for Help

Recently, Desperate Housewives writers decided to paralyze Orson, Bree's husband. He was involved in place crash as a victim. Bree was going to leave him but felt so guilty about her affair. Her reverend told her to stay with Orson if she wants to reach haven as a devout Catholic. So she decided to forget about trying to divorce Orson and remain as his wife. Orson now wants a divorce simply because of Bree's choice. Either way, they're stuck together. And Orson's stuck in his wheelchair. In this particular episode, Orson goes for practically a week without taking a shower and refuses to let Bree bathe him. (Gross, I know.) Bree has an issue with Orson not saying "please" and basically ordering her around like a slave. At the end, they confront each other over a hose fight. Orson breaks down and admits how difficult it is for him to suddenly have to ask for help and say please. He gets up at 5 and knows that Bree doesn't get up until 6:30. If he can walk, he'd go and make himself a cup of tea. But no, he has to stay in bed until Bree wakes up, an hour and half later.

Orson's voice of frustration did struck a chord with me and I'm sure many other people with disabilities. As an adult, it's so much harder to become "dependent" on others for assistance. I have learned to become self-advocate for my hearing loss and ask people to do things for me like turning up the light in a restaurant or move to a quieter spot in a loud room. With my vision, it's so new that it's still difficult for me to really ask for more help. And well, the whole "please" thing... I have to agree with Orson on this. It can get tiring of saying "please." But I almost never forget to say "thank you" (learned this after getting into a spat with one of my best friends in high school for not saying so when she gave me rides).

Especially when it comes to transportation. I have been driving since I was 16. My parents live in the suburbs, but we live around the block from our big supermarket, a plaza, and Starbucks. Everything else, including the town villages, are not walking distance. Biking, yes when weather permits. My friends in Rochester know that I don't drive at night because of my nightblindness so they're happy to come pick me up or give me a ride home if someone takes me to our meeting place. When it comes to daytime driving, it's more frustrating in terms of adaptation. I can see during the day. But my parents don't feel comfortable putting me on the auto insurance when I'm a risk to myself and other drivers because of my limited vision. They took away my driving privileges in December. So it's just new to me. And now I have to ask? There was no question about it that I absolutely had to go back to my University where I can rely on public transportation and come and go as I please. But with my parents, I feel like I have to justify why I want to go to X or Y. Even if I just want to bum around there, especially if X is like 20 minutes away. That includes the mall. This includes being able to set up appointments. This is particularly embarrassing for me because they're during the day and um, I have to ask my stay-at-home dad to drive me. And I have to make sure the appointment time doesn't conflict with his routine. As I mentioned, if the weather permits and roads are clear, then I will walk to the plaza. Almost nobody ever walks or bikes in my area unless it's part of using the city's sparse public transportation system. So what I have to do at home is all more socially abnormal.

Now I can't just take the keys and just go to our fantastic supermarket and pick up some delish food. Now I have to figure out what's in the kitchen and deal with it. Thank goodness, I do like eggs.

(In)visible Disabilities

My University's newspaper publishes an extra section on Wednesdays, usually a research article covering a particular issue on campus or in the town. These articles are generally pretty good and interesting... so I look forward to every Wednesday (not just for New York Times' Dining Section!)

Today, I was pleasantly surprised that they decided to bring up "invisible" disabilities. The reporter talked to a variety of students. Some had their disabilities for a long time, others just more recently. They all talked about the adjustments they've had to make when they came to the University and how their disabilities affected their academics and social life.

What struck me in a way that, even though the article considered hearing impairment or vision loss as a "visible" disability, I have both a visible disability and an invisible disability. With my CI, it's just obvious that I'm deaf. Sometimes it can be invisible because I generally speak clearly and intelligibly. However, with my blindness, it's practically invisible at first sight. It's true, I do say that it takes a little bit of time with me to realize that I have vision troubles. It's all the little things. Like today, for example, I went into a new restaurant. I had to stop and look around for probably a minute before I could see the matire'd standing there, waiting for me, behind her counter. I apologized and said, "It's my first time here so I'm not used to all this..." Awkward. But I get over it in less than 30 seconds.

It's true. When I go to a new place and I'm arriving alone and meeting someone there, I have to make every effort to show up early so that A) if it's slightly dark, I can use the extra time to stand off to the side and let my slow-pokey eyes adjust to reduced lightning, or B) I can survey how the room is set up in order to avoid crashing into chairs and tables (and potentially breaking glass!) when I follow the matire'd to my table. This goes for classrooms that have chairs moved around frequently. If someone is with me, I let the person help me, either by taking my arm and leading me from behind, or for me to follow closely in their footprints.

One thing I do really hate- kicking the legs of swivel chairs as I pass through.

The students in the article talked about perception from others and dealing with friends. It's frustrating too. My deafness, I believe, doesn't hinder my ability to interact in social situations because I'm pretty good at lip-reading and I have good programs in my CI. I wrote a bit about this in my "diversity statement" for a PhD program. Basically, I have achieved a lot with my hearing in order to be a participant in a hearing society.

Vision is another story. As long my vision doesn't get in the way, I can jump in things pretty easily. Unfortunately, when my vision loss does get in the way, my world seems to fall apart. I know that I have cut myself out on purpose from social life at night like going to bars or a crowded party. It's my fault in many ways in terms of being able to establish friendships with people to go out with. Even when I walk into a seminar room late, there's that swiveling chair thing. I feel ashamed deep down when people look up and see how I'm kicking into legs of these chairs and occasionally a computer cord. I wanted so much to tell them to cut me some slack because I don't see those chairs! Instead, I pretend that nothing's happened and move forward. Then it comes around again when it's break time... I do feel pressured when I try to cover up my vision loss. My deafness is enough. Thankfully, in many ways, a lot of graduate students really spend weekends studying.

There is something that the director of student disabilities services that has been bothering my list-serv that shares information about disabilities. The director had said that they're about helping students to empower themselves and be self-advocates. Some people disagreed- students need help. They pointed out that usually students come to the University recently diagnosed and just don't know what's available for them. The director went on to say "Look, if students want to have a peer-support group, then it's up to them." Basically, if the University doesn't have what the students are looking for, it's up to them to make it happen. The University would rather be hands-off and let things happen. I do have to admit that there must be tons of high schools that don't offer enough resources to their students and the University is the students' last chance for assistance in self-advocacy. I must admit that I have been blessed with excellent teachers and professionals growing up and have lived with myself for so long that I have forgotten what it's like to be... in square one. I did ask about connecting with other students at UM and the disabilities services were pretty reluctant about sharing information. I do wish that there was a list out there where students can look up others who may have similar issues.

Sometimes I do need to snap into reality that there are others who are just not as aware as I am about resources and support.

Being deaf is so easy for me because I've adapted to it and take advantage of any opportunities relating to it. And it's visible to everyone and it's not something that I can ignore. Blindness is something that's much more difficult for me because it's invisible to everyone else. The fact that I can still see makes it all more challenging for me. How do I convince others that I cannot see everything? I have to educate that there are different levels of blindness. Being blind does not always equate to a white or silver cane. There are times that I wonder how would my day be different if I walked around with a cane. Would I be treated differently? I must admit that I have talked more with this staff member at the office of disabilities about my vision loss than I care to... because I don't feel as if I have anywhere or anyone to turn to. Mostly, it's just small stuff that I have to live with in silence. Like having to feel for floor numbers on the elevator if the light is too dim for me to see if I'm alone. If someone hops on with me or is already on the elevator, I will step back and ask to press Floor...4....please.