Being the Observer

[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.

Letter from Camille to Santa

Dear Mr. Claus,
I know you can see when kids and dogs are naughty and nice. The other day, a boy was really nice and I want you to make sure to give him an extra cool gift.
Mom was walking me to get my nails trimmed. (Yuck!) When kids notice me, they want to play and I have to work extra hard to do my job. When a boy walked up behind me and Mom, I was worried, but he just wanted to tell Mom that I’m cute. (Of course Mom agreed.)
Then he told Mom all about his dog. When we got to a corner, he told Mom she should move over because there was a puddle. I really appreciated this because I don’t like getting my paws wet.
Now, Santa, I have to confess I then did a bad thing. I didn’t stop at a curb and Mom had to make me do it over again. The boy stood in the street and helped me do my job by watching for cars.
Please make sure to put something extra good in this boy’s stocking. And, Santa, don’t get too mad at me for making a mistake at my job. I try really, really hard.

The Letters G and H

This week’s incident is brought to you by the letters G and H for the Gentlemen who tried to Help me.
Normally, I take a bus that leaves from my block, but when I wish to go to a different part of San Diego, I need to walk about half a mile to another stop. It is pretty much a straight course and I cannot conceive of something easier.
Walking the route, I became confused at a particular intersection. Part of the problem was an annoying dog. Part of the problem was my tired, fuzzy brain. Part of the problem was my inability to sort out the traffic sounds to understand in which direction I wished to proceed.
I was approached by an older gentleman who’d been hanging out with his friend about fifteen feet away. He offered help. I said I thought I was alright, but I didn’t even convince myself because I was still trying to sort everything out.
As I tried to parse my surroundings, he kept offering help, so I finally agreed. My suspicion was that he wouldn’t give me the time and space to figure it out for myself, so I took the path of least resistance. He wanted me to cross in a direction I was not trying to go, which I explained to him.
I thought we were all on the same page and crossed with his friend following behind.
I walked to the next intersection and something seemed off, so I pulled out my phone and used my navigational ap. I was not where I had expected and wasn’t certain how to achieve my destination, so I asked a man walking past. He gave me a clear indication of my location and a simple set of directions to follow. Though I missed my bus, I made it to my stop.
I have no idea how I went in the wrong direction. It could have been me. It could have been the gentlemen. Given that I crossed in the way they wanted me to originally, I suspect it was a case of them thinking they knew what was best for me.
One noteworthy fact is that I was not my polite self to the gentlemen, but to the man with clear directions, I was graciousness personified. Sometimes how I am treated profoundly effects how I behave. Another indication I’m human.

Jen, a Curb and the Skateboarder

The holiday season is particularly insane this year and I am unable to write long, probing entries. Instead, I will endeavor to take note of something that happens to me, relay the specifics to you, and let you think about it.

Guide dog at my side, I was walking down the street in my neighborhood and came to a curb. The dog stopped. I didn’t. I went over the very high curb and somehow gracefully landed gently on my butt so that I was sitting on the curb.

Someone who knows me slightly from our mutual love of a particular musician came up behind me on his skateboard. “Are you alright?”

“Yeah. the dog stopped. I didn’t. I’m a klutz.” I stood up and got back up on the curb waiting to cross the street.

“Are you sure you’re okay?”

Yeah, thanks. Fine.”

“So the curb is a little bit in front of you and really high.”

“Got it. I’m good. Really.”

While standing in the middle of the street, he continues to describe the curb, advise me to be careful, and so forth. Finally, since his presence in the middle of the street makes it very safe to cross, I do so. Upon reaching the other side, I say, “There. I did it. You weren’t going to leave until you saw me do it, were you?”

He says no and we both start walking. He tells me he’s going to get a taco, I say yum, and he says he’ll see me later at the show.

The end.

Life’s Perversities

The twists and turns of the human psyche are sometimes truly weird. Today I was about to put lotion on my right calf when I noticed I had a rash. Later, as I mentally inventoried my closet to select appropriate clothing for a panel presentation, I dismissed a skirt without a second thought because of this rash.
I have scars all over the place including my legs and I never think twice about shorts or skirts. One small, temporary rash and I’m reaching for concealing pants. Objectively, it’s… screwy.
I think it’s fascinating what we integrate into our self concept and thus do not question versus the things that throw us for a loop. Often the little things are the mountains while the truly huge
things have shrunk to molehills.
Known as schadenfreude, humans can take great joy in the fact that they are not enduring the tragedy of another. How come we cannot find the same solace when it comes to our own lives? Sure, I have a rash on my leg, but in comparison to the other things I’ve managed to integrate into a positive body image, a few red bumps are nothing.
Yet even as I write this and see the logic behind my words, I cannot help but think, Yuck. Nobody wants to see such an ugly thing.” I’ve definitely proven I am a mere human with the same perversities as the rest of our species.

Adding It Up

Over the past couple of years, as I work to sort out friendships and find some sense of community, I’ve learned a few things.
1. Friendships need to be equal, balanced, healthy, and reciprocal.
2. Having friendships that aren’t these things is ultimately bad for me.
3. I cannot nor should I try to “compensate” my friends for the “hardships” of being friends with me.
4. As a friend, I actually am enough. In fact, in some ways, I sort of rock.
and then there’s what I’ve figured out about social stuff and disability.
1. Most people cannot se past the fact of my disability to see the potential of me as friend.
2. Nothing I do will make me seem more or less tempting as friendship material to someone who cannot see past the fact of my disability.
3. A large chunk of those who see past the fact of my disability to me as a person are interested in friendship because I represent (to them) something as broken as they unconsciously see themselves.
4. a shockingly small number of people see me as a potential friend and also see me as a competent, vital adult.
5. All of this is because of how the world thinks about disability and how that has effected the probably unconscious thoughts of individuals.
If you add up the first and second set of things I’ve learned, you come up with this: I am going to have a very hard time finding friends, it is something I cannot change through how I behave, and it will lead to social isolation.
I learned an interesting fact last week. It seems that people outside a marginalized group are not very good judges of what it is like to be a part of that marginalized group. Outsiders are not able to assess degree of prejudice, significance of negative stereotypes, or amount of “suffering” marginalized group members “endure” because of their group status. In other words, people who don’t have a disability equivalent to mine are not going to get it.
There’s this great phrase: Disability is the responsibility of the disabled. For example, I get a print piece of mail. It is not amongst the acceptable options to call up the sender and demand they do something about it. Instead, I’m suppose to find someone to read it to me. Similarly, if I am amongst a group of people who are interacting based on sighted people rules, I am expected to find a way to play by those rules or accept that I will not be included. Should people in the group actually alter behavioral patterns so I can participate, it is done as a kindness not as a “no brainer” because of course you play by rules everyone can follow.
So, people are unlikely to see my social isolation as an artifact of disability and if they do, chances are they see it as a problem I should fix or tolerate because I’m the one with the disability.
Here’s the funny thing: if you look at the social model of disability, where disability is a factor of how the world works, then the very world that is the architect of my situation refuses to do anything to deal with it. Should you look at disability from the medical model, where functional limitations based on physical difference cause disability, I am still not to blame for my circumstances, yet I am left to cope with their impact.
Now here’s where I don’t know if I’m being fair or reasonable. I’m angry and frustrated, and disappointed in the people who express affection toward me. The vast majority have consciously or unconsciously left me to deal with all of this on my own, yet supposedly care about me and my happiness. They will guide me around obstacles, read menus, and put up with guide dog fur in their cars, but they will not do anything to alleviate what I consider possibly the most fundamentally distressing consequence of disability in my life – soul eating social isolation.
Moreover, any efforts on the part of others to mitigate the situation have to come from a place of love and understanding not obligation and pity. I cannot beg, offer brownie bribes, or barter bread for behavioral changes. People either get it or they don’t. they either do something or they don’t.
In the past year, I have pruned friendships that weren’t working well. I have tried to back off from the friends I have retained because constantly asking for time and attention finally struck me as unhealthy. Should I go through another round of trimming based on those who understand and help mitigate my isolation and those who do not, I’ll be down to about four friends. I’m pretty sure that’s not enough for an extravert, even a shy extravert.

Cherry Picking

Okay, other disabled people, I have a question for you. Have you ever noticed that non-disabled people in your life seem to pick and choose what aspects of your disability they will and will not deal with? This is the friend who will come over and visit, but not go out because finding a wheelchair accessible restaurant is just too hard. This is the person who will understand what it is like to encounter an inaccessible building, but will not understand how socializing can be inaccessible. This is the individual who knows all about your deafness and moves heaven and earth to accommodate it, but thinks you should maybe just try harder to be less depressed.
Society creates disability. Society makes dealing with the disability the responsibility of the disabled person. Our loved ones further add to the situation by cheery picking the consequences of our disabilities they do and do not wish to cope with. In this age of unconditional love, disability is somehow outside the bounds of what those who love us are expected to handle. It’s somehow too much to ask or expect.
I guess I’ve missed all the chances in my life I’ve been given to “decide” if I wish to deal with this or that aspect of my disabilities. Maybe the offer was tendered in print?
Should such a proposition have been made, for my entire adult life, I would have replied that disability is a package deal and to separate it is akin to selling a house one room at a time.
Lately the conditionality with which those around me “accept” my disabilities has begun to irritate me in a way I cannot dismiss. Maybe if the conditionality was explained in terms of their shortcomings. “Jen, I want to drag you to this movie, but I don’t think I can describe it. What can I do?” Instead, people just conveniently assume, despite me saying the contrary, that I can’t go to movies. Or maybe if it was broached forthrightly. “Jen, what do we do about my other friends who don’t know how to interact with a blind person?” Unfortunately, in its place, I’m left to fend for myself.
More and more, I’ve been feeling like one of those boxes you get at a yard sale or auction. You bought it for the cool bowl on top. When you get it home, you sort through and set aside what you want and what you will discard.
Well, I’ve decided I’m no longer a yard sale box. I haven’t yet figured out how you go about manifesting such a decision in the real world.

Cane or Canine

Changing from cane to guide dog (or vice versa) often elicits questions that boil down to why one method of navigation is considered superior to the other. Ultimately a matter of preference, there are some aspects worth explaining and since I have just gone from long white stick to something that likes to eat sticks, I thought I’d put words to my choice.
A blind person moving through the world must attend to:
1. walking in a straight line
2. stationary obstacles
3. moving obstacles
4. the route being followed
5. geographic location within that route
6. any and all changes that might give warning of unexpected hazards
For me, simultaneously keeping track of all these elements of travel is mentally and thus physically taxing. Miss catching one of the six balls and catastrophe results. For example, should I be focused on walking in a straight line and not hitting anything, I might zone out and miss a landmark essential for my route. Should I have all those navigational course elements in my head, chances are I’ll forget about moving obstacles. Anyone who knows me is aware of the fact that getting my attention while I’m walking around is next to impossible. I literally zone out to the point that I don’t hear my name being said. Forget trying to have a conversation or toss off a casual greeting while walking past someone. All my mental powers are required to safely navigate my course.
On an unfamiliar route, a dog can attend to walking in a straight line, avoiding stationary and moving obstacles, and unpredictable hazards. The handler’s job is primarily to focus on their location in the route being traveled. Some attention is necessary to encourage the dog, correct mistakes, and give commands, but it is mostly routine.
On the other hand, when you get home, your cane goes in the corner and stays put until you are ready to use it again. A dog requires food, water, potty breaks, petting, love, praise, entertainment, and grooming. On the other hand, your dog will wag their tail at you and lick your face whereas a cane is a singularly unresponsive cuddle buddy.
It all boils down to the cost of cane travel versus the cost of maintaining a dog. Each person has a different bottom line for both. In fact, it is much like manual versus automatic car transmissions. I’ve seen people have heated arguments about which is superior and the same can be said for those who prefer canes versus those who want a four-footed guide.
For me, a dog grants me independence. Oddly enough, I really didn’t appreciate that fact with my first dog. (I had a very different life then including a significant other which probably caused me to be too dependent on people.) It was only with my second dog, Emmy, that I began to see how my life could change. Suddenly, I could go places that had complicated routes and reach my destination not ready to fall over from fatigue. While I knew this truth in a theoretical way with my first dog, it’s practical application was not obvious until Emmy.
The challenge now is to fully realize the independence this dog offers me. With talking GPS, I can literally go to an unfamiliar area and find an unknown destination. Unfortunately, I’m a bit of a wimp and have a tendency to fear the “what if”s I can imagine. “What if I get tired and can’t think clearly so I get really lost? What if my phone battery dies? What if the dog gets hurt? What if the dog does something stupid? It really all boils down to what if I fail? Somehow, in my mind, blind people aren’t allowed to fail. Or, well, at least not this one. This is a clear case of disability – blindness and chronic fatigue – not being my problem, but rather my own uniquely shaped mind.

Follow Up

I wanted to finish the story of my class Power, Privilege and Visions of Justice.
After the first meeting, a cooling off period was in order, so I waited until Friday to take any steps. Through the point person at my LGBT center, I got an electronic copy of the syllabus and Later the instructor emailed me electronic copies of the readings.
Still quite upset, I tried a couple more days of calming down, but it didn’t work. Finally, I emailed the instructor thanking him for the readings and expressing my frustration with how the class was conducted. I bluntly asked how I could learn about privilege from someone who created an exclusionary classroom environment. We emailed back and forth, but he continued to feel the only issue was the readings and their accessibility whilst I thought there were broader issues at play. He wanted to talk about how he was used to Disability Services handling everything. I wanted to discuss how his actions reflected able bodied privilege. Talking at cross-purposes never works and this case was no exception.
My other email exchange had a far more productive outcome. I again contacted the point person at my LGBT center and her almost immediate response was a request to talk about it. In that phone conversation, I found someone to add to my list of people who have an open mind and are willing to learn. It looks like she will be an ally in any other future efforts I undertake to educate my LGBT center on issues of accessibility.
Armed with the syllabus, I then began to use google and other methods to search for the readings in alternative formats discovering that less than one third were available. Given a couple of weeks, I might have managed to work things out, but within the time constraints of a 6 week course, I felt it was not a reasonable endeavor nor was it a reasonable accommodation for my LGBT center to make.
I attended one more class, to get a sense of how the readings would be used and decided they were too central to the discussion for me to simply skip them. I explained this to both the instructor and the point person.
I have learned a couple of lessons from this experience. First, simply telling someone a blind person is going to be in their class is not enough. They need to be educated as to what that means. Explicitly. My mistake was to assume it was clear. As one friend has often told me, “Educate. Clarify. Remind.”
Second, don’t assume who will and will not understand disability issues. My surmises in this situation were totally off.
There have also been a lot of reminders of lessons I should have learned long ago. When you identify a problem related to access, the next thing out of your mouth should always be the solution. The formula is identify the problem, try to relate it to something familiar to the target individual, and give a preferably simple solution.
It has also become clear that I need to cultivate calm. Educate from a place of calm. Meditation here I come.

Power, Privilege and Visions of Justice: A Tool of Oppression

Today I am going to simply describe events as they unfolded last night endeavoring to be objective. Wish me luck.
My local LGBT Center was sponsoring a class entitled “Power, Privilege and Visions of Justice.” I was intrigued, so I sent an email saying I’d like to attend and asking that the instructor be told a blind person would be in the class.
Two weeks later, I attend the first class. As we are waiting for things to start, people are handed something in print. I am given nothing and told nothing. Class starts and a clipboard is circulated. I never receive it.
Going around the room, we introduce ourselves. I know when to speak because I know the person sitting directly next to me and can cue off of her.
Next, we engage in an activity in which we are to raise our hand if we agree with this or that statement. At the appropriate points, I dutifully raise my hand without any notion of what my fellow classmates are doing.
Asked to give examples of oppression, I mention that The Center’s prostate support group was listed as a “gay men’s” group and point out bisexuals aren’t included. I am told we will not be discussing such things in this class.
After being directed to read part of our syllabus silently, we are asked a series of questions as feedback so the instructor can decide about certain aspects of the course. Then we are told our assigned reading will be at the center’s desk beginning the following morning. The expectation is that we will come back to pick it up.
At the end of class, I wait until the room is empty before approaching the instructor. First, I make sure he was told I would be in class and when I learn he knew, I tell him all the aspects of class that bothered me. It was as if he had never considered any of it. His only thought was that he might have to read the materials aloud to me. Or, well, the parts he thinks are important.
I’m thinking about not returning to this class.