Circumstances are unfolding in my life and I find myself without a frame of reference. The voice inside my head that can predict how a given thing will impact my life, from energy it will consume to amount of time needed to process, is without words. The oddest part is that it took me literally more than two weeks to realize this. For the past two-and-a-half years, medical drama has been a fact of my life. It took two of those years for me to stop denying that reality. Now it looks like the cause of my tracheal stenosis is known – my esophagus muscles and my stomach – and that needs to be fixed before my trachea can be addressed. The most viable solution involves surgery just given governmental approval. Then I’ll have to have surgery on my trachea to remove the damaged part. It’s not a common surgery and requires five days of hospitalization to make sure the sewed together ends don’t (Yikes!) come apart. Under the best of circumstances, I do not deal well with medical matters. These strike me as not the best of circumstances. Lately I find myself reading fluffy novels, watching bad television, taking my dog for work walks, going to yoga, and sometimes trying to tackle one of my volunteer things. Not a lot of volunteer stuff is happening. I’m sort of unable to drag myself away from the books and TV. Heck, I’ll even simply sit there. It’s like there’s nothing left in me for anything requiring my soul. I’ve been beating myself up about this for a couple of weeks. “Get off your butt and DO SOMETHING!” my brain screams. It falls on deaf ears. “Why are you just sitting there?” gets no response. This isn’t exactly depression, though that would be understandable. It isn’t exactly escapism, either. It’s as if my inner batteries have been drained past empty and I’m trying to recharge them with the weakest of power sources. today it came to me: I don’t actually know how to handle this. I am a fish out of water, a boat without a rudder, a plane without a pilot. I’ve decided one I hope useful thing. I get to read books, watch TV, and even sit there. I am allowed to do it until I’m so bored that I do something just to shake things up. My commitments can wait. I’m going through something hard. Maybe grace under this pressure is achieved by not doing things that increase my stress. An, yeah, I wrote that. Astonishingly, I even think I believe it.
As the past two entries might cause you to surmise, last week I had more than my fair share of crap landing on me because I’m blind. I knew it was getting to me, but truly didn’t understand how much until I bit someone’s head off.
I went to a discussion group on transgendered women’s issues that, from my previous experience, is essentially a fascinating discussion of gender with lovely servings of race, class, and sexual orientation politics added to the stew. The facilitator has always been extremely open to disability issues going so far as to send me an article ahead of time so I could read it and fully participate in the conversation.
Maybe my expectations were too high. Maybe my frustration level was at the boil over threshold. Maybe I’m just human and like any member of a marginalized group sometimes want to not have to educate or explain, rather having everything simply be done the “right” way. Whatever the case, I lost it.
First, in trying to make a point about something being both intellectual and emotional, a person must have tapped their head and chest. It wasn’t clear initially, but through context I sorted it out. Then someone made reference to how they look. I didn’t understand her point because I had no way of knowing she has masculine traits. When the same person started telling a story using facial expressions that conveyed crucial information, I put up my hand and stopped her. The conversation then went something like this:
“Hang on a second. Could you please, please stop assuming everyone in this room is sighted. It’s pissing me off.”
She replied, “I didn’t know.”
“The dog under the table didn’t tell you?” I asked.
“I didn’t know what the dog was for.”
I said, “I know I don’t look blind, but still. You can’t just assume everyone here can see.”
She said, “My bad.”
It was awkward, I was intense in how I presented my point, and the entire room was silent for that moment afterwards that tells you everyone is uncomfortable with how someone behaved. And by someone, in this case I mean me.
I’m not even going to explain why I was justified in being upset because clearly I had good reason. I did not, however, have reason to be rude. I simply lost my cool after a week of being hemmed in by a world that assumes sight and cannot manage to think outside that particular box. I wish my ire had been directed at those who truly deserved it. Then again, when it’s an entire social structure to blame, how do you vent at the appropriate entity?
On the bus today, I heard the following conversation.
Woman: I can’t imagine being like Bob. I’m so grateful I’m not like that.
Man: I saw someone like Bob once. He was a judge.
Woman: :Wow, really?
Man: He did a good job.
Woman With all Bob’s issues, I can’t imagine what it took to go to college and then law school.
Man: Yeah, but if I were in court, I’d want a judge like Bob. I think he’d do a better job at deciding because of his issues.
Okay, so Bob is clearly me and these two people were obviously discussing blind people WITHIN MY HEARING.
I tried counting to ten. Still wanted to kill someone. I counted again. Still pissed. Then I decided to do the squares of numbers. By the time I got to 20 squared they were done talking. Thankfully.
I guess if I’d been brought up on murder charges, it would have helped to have the blind judge they were discussing. He would have understood the situation as justifiable homicide.
It’s been one of those weeks where becoming a hermit looks rather appealing. Multiple factors have contributed to an exponentially higher amount of contact with the Medical World. In the Blind Person v. Medical World war, I am currently getting my backside handed to me on a surgical steel platter.
I have a ten page form to fill out for a doctor. The PDF is an image not text. The office manager tried to turn it into text, but it doesn’t exactly work. I’m going to need to sit on the phone and go through the entire thing with someone.
That, however, had a better resolution than the next problem. I have an online questionnaire to complete for another doctor. They have designed certain parts in a way I can’t seem to negotiate. I made extensive notes on my answers and called the doctor’s office.
Once I explained the problem, the first question was so predictable, “Isn’t there someone who can do it for you?”
“Um, no. Can I email all these notes to someone so they can fill it out for me?”
“No.” I’m bringing my notes to the appointment in the hopes that someone will better understand the problem when my guide dog is standing by my side.
And the final bit of insanity. I need to have a study of my stomach’s ph level. There is great technology that allows them to monitor it 24/7 if I just carry around a little box. I asked the doctor, “Is sight necessary in any way to do this?” I was assured not.
Being skeptical, I asked the scheduler. “Yes, of course. you need to log your symptoms as they happen.”
“there’s no way around it?”
“I can’t have someone with me 24 hours a day.”
“I don’t know what to tell you.”
She is leaving a note for one of the nurses who might be able to solve the problem. Otherwise, no stomach test to help us sort out the cause of my tracheal stenosis. Without being able to pinpoint the cause, I won’t be able to avail myself of the permanent solution.
People speak about the privileges I sometimes receive as a result of my disability – reduced bus fare, cutting ahead in lines, access to free audio books, extra time on tests, or being able to have a dog in a no pet apartment. I would relinquish them all, even the dog, to also rid myself of events like the above. Trust me when I say that lower bus fare is not compensation for the ongoing battles I must wage in the Blind v. Medical World war that is consuming my life.
I’m certain you are familiar with having to balance work, family, and social obligations, sometimes having to sacrifice one for the benefit of another. In my life, these trade-offs can be frustrating both because there are no good choices and outsiders do not comprehend the situation.
I have a small yard that has been fenced so my dog can go relieve herself without me needing to accompany her. This is a way to save a little bit of energy. A couple of times a week, someone comes along and scoops up all the solid waste and disposes of it. While not ideal in that odiferous items are left to perfume the air that other residents of my apartment complex must inhale as they pass, given my circumstances, it is the best I can do.
Should I be doing better with my guide dog? Yes. Blindness does not mean I cannot scoop after my animal. (In San Diego, I am exempt from having to do so by local ordinance, but that has little baring on whether or not a blind person has the capacity.) If I had typical health, I’d be ashamed of myself for leaving her droppings to intrude upon others.
My onsite property manager is not pleased with me. My scooper was on vacation and I let dog droppings sit for about six days. There was a mini, excuse the pun, stink over it because of the “smell” and in my opinion, because I got him in trouble. The multitude of cats living in my complex relieve themselves wherever they wish and smokers fill the air with toxic clouds without sanction. I, however, can’t leave some droppings for less than a week.
I know I should be doing better. I wish I could do better. An internal debate rages that goes something like this:
“Jen, can’t you just take her out on a leash four times a day?”
“Sure, but I’d have to give up something else. What should I sacrifice?”
“Don’t go out with friends. Give up one of your discussion groups. Stop some of your exercising. You have choices.”
“Those all contribute to my sanity or my physical health. If my life is reduced to what I should do, I’m pretty sure I wouldn’t want to be living that life.”
“You are a drama queen.”
This is when I usually decide I’m pretty selfish and at its core, my choice to leave poop to scent the air so I can do things that make me happy is self-centered. Still, I cannot bring myself to handle the situation in any other way.
Situations such as this arise frequently leaving me feeling like I’m failing not living up to some internal standard of what it means to be a “good” person. Apparently, good people put all responsibilities ahead of everything else. Apparently “good” people bring new meaning to the word selfless.
I fail at being a girl because I don’t engage in typical female behavior: I avoid hairspray, refused to wear lipstick even for my sister’s wedding, think gender roles were made to be broken, and wouldn’t know lady-like behavior if it bit me on the backside. I fail at being a disabled person in that I’m not grateful the appropriate amount, tend to be demanding, and refuse to fit the expectations others have of what it means to have my disabilities. These are things I’m almost proud to fail at.
Failing to be a “good” person, on the other hand, bothers me more than I want to admit. I guess it’s because I actually want to be that “good” person and cannot manage it because I, depending on your perspective, either lack the selflessness necessary or do not have the physical ability. In either case, I am left feeling inadequate in one of life’s most basic endeavors.
This past fall, my kitchen sink became clogged and after a lot of back and forth, my onsite manager and one of the maintenance people fixed it. While they did so, I went about my business in another room. when the onsite manager left, we had this conversation:
“Did everything from under the sink get put back?”
“It’s all back under there, but I’m not sure it is in the right place.”
“That’s fine, just as long as it’s under there. Last time I forgot to ask and a plunger almost got me in the eye.”
“It’s all back under.”
I was sitting at the computer and noticed my dog was obsessed with the kitchen. Finally, I went to investigate and discovered the trash, which is usually under the sink, was in the middle of the room. I’d thrown away grapes, which are toxic to dogs, so I was upset. Then I discovered some other chemicals were left on the floor as well.
I walked out of my kitchen and called the manager, who didn’t answer. I then sent an email saying that I had found some stuff in my kitchen that hadn’t been put away and I was concerned that in trying to find everything, I might hurt myself. I asked that he come back and help me locate everything.
He informed me that everything had been put back. I got the offsite manager (his boss) involved. It became a big mess. Later that month, I refused to let the onsite manager enter my apartment because if I couldn’t rely upon him to know if stuff had been put back, I couldn’t trust I was safe after he left.
I actually told the offsite manager that I’d allow the onsite manager in my home if he took responsibility if I was injured. It was the offsite manager’s choice to leave it that only one person of his choosing would deal with future maintenance issues.
My onsite manager seems to be angry with me. He and his husband now both walk past me without saying a word, which I find to be a wee bit creepy especially since the husband once grabbed me and kissed me in the street. I am also unable to reach the onsite manager via phone. I am no longer included in complex social events, which is easy for them to do since they are posted on signs. It is clear I am not popular.
Here is my problem: I’m not trying to do anything but STAY SAFE. Whatever has to be done to accomplish that should not be an issue for anyone. Yet somehow I am the “bad guy” and while I will stay safe, I will pay for that safety via social sanctions. Yippy.
Last June, I started a co-ed discussion group on bisexuality in part because the only venue of that type was male-dominated in a way that made women uncomfortable and had proven to be unfixable. Unfortunately, the new group is not attracting women, so I finally took three deep breaths and began organizing a female-only version.
Women-only spaces make me ill at ease in the same way I feel slightly weird when I realize everyone in a room is white or heterosexual or LGBT or from a middle class background or whatever. Forming a group that is explicitly homogeneous on a particular dimension has forced me to examine my discomfort and shockingly the explanation involves disability.
When women speak about the importance of gender specific spaces, they reference times in their lives when they felt limited by a patriarchal system, silenced by men, or stripped of their personhood reduced to an object. Women-only groups allow females to express themselves freely without the constraints male-dominated society imposes. It is about breathing a sigh of relief because all the “crap” is suddenly able to be set aside and the business of being oneself embarked upon without the usual fetters.
All my life, disability has been the single factor most likely to shape my experiences. It is the thing people react to, the trait by which others define me, and by necessity mentioned often. My female gender, on the other hand, is not something people discern nor is it a regular topic of conversation. Its significance is limited to the bathroom I am directed to or the gender specific moniker used.
I have experienced a myriad of limitations placed upon me by others, from expectations of achievement to opportunities offered. At every turn, the judgments of others have been barriers between me and what I want. They have almost entirely been a factor of my disability not my gender. It’s been “Blind people can’t do physics” not “Women can’t do physics.”
People do not attempt to silence me. Instead, there seems to be this assumption that I lack a voice as if I have no thoughts or words to be expressed. Rather than devaluing my perspective, I am presumed without opinion.
My very personhood has been stripped away not because I am female and therefore an object of sexual desire but because I am perceived as my disability. I am blindness with legs and feet.
The bottom line is that I don’t experience the world as a woman, which means I have trouble identifying with the reasons women want spaces to themselves. It would seem reasonable that I could at least identify with the desire to have a space free of oppressive forces, but even the idea of a disabled-only space makes me twitch.
I believe this inability to even empathize comes from the fact that I have assimilated into able-bodied culture to such an extreme that I taken it on as my own. It might be flawed, oppressive, and negatively impact my life, but for better or worse, it is the world I inhabit. Instead of creating spaces where I can escape its oppressive forces, I want to transform the bigotry.
Furthermore, I have found a way to construct a life that rejects the limitations, denial of personhood, and lack of a voice able bodied culture would impose upon me. For example, while strangers may assume I do not engage in independent thought, this blog allows me to use my words to articulate my experiences in the hopes of redefining how people perceive disability.
Eleanor Roosevelt once said, “No one can make you feel inferior without your consent.” I guess the totality of my life experiences have brought me to a place where oppressive forces can do their worst truly impacting my life in negative ways, but I refuse to give them the power to limit anything within my control such as my self-image and ability to express myself.
I had a conversation with a woman of color that has left me annoyed not with her specifically, but with the whole way our society conceives of prejudice and marginalized group status. It went something like this:
I asked, “When a person of color comes into a room and sees me, do they see me as a member of the majority culture?”
“I’m not recognized as a member of a marginalized group?”
On my walk home, I made a sort of mental list. Before I share it, I want to emphasize the fact that I don’t believe in comparing types of oppression, saying one is “worse than the other, nor do I think I understand what it means to be a member of a racial minority. This was just a quick mental exercise.
People of color are thought to be inferior.
Add child-like and dependent and you have the attitude disabled people face daily.
When a person of color gets a job, promotion, or into a great school, it is viewed as aresult of affirmative action.
Same with Disabled people.
People of color are discriminated against in housing.
Um, us too.
People of color, especially men, are viewed suspiciously as if they are about to commit a crime.
Disabled people, on the other hand, are often thought to be contagious and therefore given a wide birth. Not the same, but…
Poor women of color are judged for having children with the posed question being, “How can you have another kid if you can’t take care of the ones you have?”
Disabled women are asked, “How can you havr a kid? You can’t take care of it.”
People of color were taken from their homes and enslaved.
Disabled people were just institutionalized and forcibly sterilized. Don’t even get me started on sheltered workshops.
Because disability is perceived as a result of a difference linked to an inability, it is not given the “status” of marginalized group membership such as race, gender, sexual orientation, or religion. Lack of this recognition of marginalized group status places disabled people in a unique position for we are not seen as members of mmajority group culture by members of the majority and we are not seen as members of a minority by other minorities.
On the fourth day of Christmas, the universe gave to me four consecutive illnesses to start out my new year. First there was the virus. then there was the bacteriological upper respiratory infection I was susceptible to because of the virus. Next, there was the infection in my tooth/jaw requiring the first root canal of my life. Finally, to complete the quartet, I had another bout with the same virus which appear to be lingering like the proverbial houseguest that won’t leave.
The first thirty-one days and counting of 2012 have pretty much passed in a blur of coughing. My dog has been neglected. My life has been neglected. This blog has been neglected.
At a certain point, you have to just give up on the “When I feel better, I’ll” thoughts and jump back into life. For February, I’ve adopted this quite possibly entirely too optimistic approach. I’m taking bets on whether or not it succeeds.
[I wish I could place this entry in December because the events occurred then and it completes the month’s theme. Anyone know how?]
It isn’t often that I am able to observe an unfamiliar disabled person as they interact with a stranger. On one of my flights traversing the country, I was in the perfect position to watch such an interaction.
Let me paint the picture. I was sitting in the window seat of the bulkhead row and two men were to my right. The man in the center seat clearly didn’t have a physical disability as I heard him walk onto the plane. I didn’t know why the young man was sitting in the aisle seat, but it didn’t particularly matter one way or another as the three of us barely interacted.
Then, we had a very rough landing with a lot of bouncing. Center Seat Man turned to Aisle Man and asked, “Do you need help?”
“Um,” says Aisle Man.
“It’s not a problem. Really,” says Center Seat Man.
“I sort of need to be pulled up,” says Aisle Man.
Center Seat Man aids him with a “There you go, buddy.” I mentally cringe because buddy is the male equivalent of sweetie which I hate getting from total strangers.
Center Seat Man is being very jocular and offers any other help needed. The more he offers, the quieter Aisle Man becomes.
Finally, Aisle man comes out with, “the landing made my shoe fall off.” (I still haven’t figured out the logistics of that happening…..)
The shoe is fixed. Slowly, Center Seat Man’s jovial chatter peters out and the interacting stops.
Throughout the exchange, I could practically taste how Aisle Man, who turned out to be a wheelchair user, was feeling. I could hear the hesitation as he tried to figure out if some strange man could help or if it would make matters worse. I could sense his reluctance to seek help. I could tell he wanted to pretty much be anywhere but there.
Aisle Man’s discomfort was as familiar to me as my own bed. Watching another dealing with those emotions was instructive. In fact, it has changed how I approach some aspects of seeking help. Perhaps I should watch more disabled people cope with the general public, because it’s almost more interesting than analyzing my own interactions.