Magic Words

About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant -- seemed to increase my social connections or generate more emotional intimacy in my life. Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He's made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I'm disabled, he not only believes me but understands why it happens. That's valuable in a way words cannot express. We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from "Blind, incapable, weird looking person" to "Smart, funny, intelligent woman." His argument is that people meet someone like me and suddenly don't know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am. I believe words have power. They don't have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don't take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process. Okay, there is something that has the power to derail things – shock. It's why some women with disabilities dress provocatively -- to shock potential dates out of the "not sexual" mindset. What would I need to do in order to shock people? Would that be in line with my personality? "Yes, I'm blind. Be careful. You don't want that to cause you to underestimate me. That would be a bad idea." The last sentence would be delivered with a slow smile. Not even sure I'm capable of a slow smile on purpose let alone uttering those words. If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It's not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it. Besides, if I noticeably aid people in coping with their discomfort, I've set a precedent. "You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too." Do I want to establish such a pattern? Yet, inaction will not change anything. Principles are great, but they don't make you feel loved and valued. Besides, women have needs. And hormones. and needs that go beyond hormones.

The Ultimate Excuse

At a symposium on disability, I attended a wide array of workshops, but the same theme kept repeating. "They don't know what to do," was related to how TABs deal with invisible disabilities, approach our sexuality, deal with us in public, offer or avoid giving aid and the list goes on. About half way through the day, it struck me -- not knowing what to do has become an all-purpose excuse with incredible power that simultaneously liberates TABs and imprisons people with disabilities. If I describe to a friend an annoying encounter with a non-disabled person, I am invariably told, "They didn't know what to do." This explanation is proffered as the conclusion to the conversation, seen as explaining everything and making further discussion unnecessary. Any emotional upset on my part should be assuaged by this rationalization. Blaming the non-disabled person becomes impossible for holding someone responsible who didn't know better is perceived as mean-spirited. Further conversation is made irrelevant for the explanation is known. Everything vanishes with six little words. Each time this happens, I feel as if I began a journey that ended five seconds later. It is a foreshortening of what should be a conversation or at least a chance for emotions to be vented. Though this happens frequently, each time I still feel caught between my unresolved feelings and social pressure to accept the excuse. The end result is the minimizing, silencing and dismissal of my experience and feelings. When a TAB uses the axiom "I don't know what to do," I find it even more infuriating. Admission of a lack of knowledge, in and of itself, is not a bad thing. What this confession of ignorance is allowed to achieve is problematic. Feelings of discomfort or fear can be dismissed, any associated guilt is alleviated and need for further action eliminated. This potent combination allows the non-disabled person to go merrily on their way. From my knowledge of disability issues, I have learned that TABs often feel uncomfortable when they are presented with the possibility of interacting with a disabled person. This unease can come from a multitude of sources – fear from having to think about potentially becoming disabled, concern that they will become entangled in a situation where they need to do something unpleasant, not wanting to admit ignorance, discomfort with an unusual appearance and... You get the idea. Instead of acknowledging or dealing with these thoughts and emotions, the person waves the magic want, "I don't know what to do," and – poof – all of that unpleasantness vanishes. There may still be residual guilt or a sense of obligation. "Someone really should be helping that person." The thought continues, "But I don't know what to do." Obligation, guilt and responsibility disappear. I have no idea why not knowing what to do has become an acceptable justification for needing to do nothing, but it has. I'm not certain if this is unique to issues related to non-disabled people confronted with disabled folks, but it is definitely true in this case. Finding out what to do is not contemplated as a potential course of action. "I don't know" becomes "I don't have to." What I find intriguing is that "So ask" never comes into play. My suspicion is that this is because people with disabilities are not seen as the ultimate experts on their own needs nor are they considered people capable of communicating. We are seen as our disability and that fact is all consuming of TAB awareness. Thus, "I/They don't know what to do," functions as an ending. No more discussion is needed. No action should be taken. Until that changes and "I/They don't know what to do" begins a journey to find the answer, a situation that could lead to better understanding is squandered. Ironically, "I don't know what to do" has no power when spoken by a person with a disability, except maybe to open the flood gate so suggestions as to how we can fix it drown us. If we don't know, we have to fix it. If they don't know, we have to live with it. Meanwhile, those who don't know in the first place move forward unimpeded.

Jen's Terrible, Horrible, No Good, Very Bad Day

Thing One The first incident wasn't all that bad – almost routine in fact. I was at a meetup type gathering and most of the attendees were strangers. About forty-five minutes into the conversation, I suddenly realized a segment of the group didn't realize I'm blind. (My guide dog, Camille, was out of harness at my feet.) "Um, you know I'm blind, right?" "Oh, no we had no idea." I could have scripted the next part. "You don't seem blind." There I go again not living down to low expectations of my behavior. Thing Two The next was far more ominous. On a "no destination" walk with my dog, I crossed a street and a man asked where I was going. I knew the street dead-ended somewhere, so I asked if I could keep going or not. His answer was not, so I asked if the street we were on met up with another street. "No, you have to go back a couple of blocks." Great. I got my foot caught up in a plastic bag that was in the gutter and had some trouble untangling myself, then I took off. About a block along my route, the man calls from behind me, "Turn there." or something. He had *followed* me. Followed. Thing Three I next ventured to the Transgender Day of Empowerment ceremony at the local LGBT center because a friend was receiving an award. Upon arriving in a very crowded auditorium, I was trying to convince my guide dog to find a seat, but she was as overwhelmed as I. A woman approached, introduced herself as Tracy and offered help, which I accepted. She took my arm in the hold you are taught for drunk people so they can't escape. I was dragged to a chair, but I let it go. Later I realized there was someone's jacket on the chair, meaning I'd taken someone's seat. I let that go too. The woman who had helped me was the M.C and immediately prior to concluding the ceremony, she said something like, "There's this young woman who I see in Hillcrest all the time." She kept going and it finally dawned on me that she was referring to me. I put my head down and began shaking it no rather emphatically. It didn't help. "I'm coming toward you, dear. What's your name?" I answered. "Now I want someone to volunteer to help this nice young woman get some cake." She didn't stop until someone volunteered. Thing Four I fled the room, hid out in the bathroom and then took my dog outside to relieve herself. I was headed back inside, reaching for the right door handle, when someone came out the left door. Fast. I was hit in the head. Camille let out two yelps. Commotion ensued with ice bags and emergency room nurses coming to check us out and people and more people and orders not to take the bus home and..... I handled part of it badly. Eventually, someone I knew gave me a ride home. Camille wound up at the vet, needed X-rays and was restricted to light duty until the bruise she sustained healed. Thing Five By this point in my week, I needed some fun. With enthusiasm, I went to my first in-the-theatre described movie. We got my headset from Guest Services -- my specific request for "the one for blind people." It didn't provide descriptions and my companion finally left the movie and went back to Guest Services where she acquired the proper headset. (I'd been given the one for Hard of Hearing folks.) Thing Six Finally, and most amusingly, dinner. I ordered a salad with peaches and caramelized onions. About two thirds of the way through my meal, I asked my friend, "Where are the peaches?" "There aren't any," she said, baffled. "Maybe these shriveled up things?" "Those are cranberries." I tasted one. They were. We asked our server and he came back saying I'd gotten the right salad just without peaches and he brought me a bowl of them. I said to him, "This is one of those things that happens to blind people. I just assumed the peaches were somewhere on the plate but I hadn't found them yet." I thought that was funny, and my friend was certainly amused. The server -– poor man --didn't get it.

Running With Scissors

When I throw my yoga bag over my shoulder, my guide dog, Camille, runs over and assumes harness position. Knowing we are headed to a place of endless pets and belly rubs, her tail wags with greater than average enthusiasm. We call this a learned behavior, concluding Camille is smart for predicting what will happen. A child carefully walks across their kindergarten classroom carrying a pair of scissors in the prescribed way. They have learned – probably because numerous adults have repeatedly scolded, coached and cajoled – that it is unsafe to run with scissors or to hold them the wrong way. We also consider this admirable behavior. I walk into my local grocery store betting myself how long it will take to find someone to assist me. Through experience, I have learned that help will not materialize quickly or easily. When a child learns safety procedures or a dog begins to accurately predict a routine, we call that good. When I anticipate an activity usually difficult will probably again be hard, I am making assumptions, thinking negatively and not giving people a chance. Is there truly a difference between the three things? When adult humans take the totality of their experience and apply it to a new similar event to forecast what will happen, we call it optimism if the predictions are good, and carrying around baggage when they are negative. If the prophecies are routinely downbeat, we are further labeled pessimists. Because we are creatures capable of reason, we try to overcome our negativity – to set down the baggage or remember that a familiar situation might turn out differently. In other words, set aside the statistically significant in favor of believing things will be better this time around. (This more positive attitude has been proven over and over to be healthier for us on a multitude of psychological and physical levels.) At Rolling Around In My Head, Dave Hingsburger wrote an entry about his own personal baggage. He articulates the fine line between the benefit of predicting based on past events and the ways baggage can interfere with our experience of a situation. To summarize, just because 95% of the time a situation unfolds in a specific way it does not mean you aren't currently in the 5% of the time version. Behaving like it is the 95% of the time event when it is the 5% occurrence is suboptimal. I began thinking about how the copious amounts of baggage people with disabilities carry is often used against us becoming a tool to minimize, silence and dismiss. People with disabilities acquire their baggage by living. One morning, I did not impetuously decide knitting in public would elicit excessive praise. Instead, it happened repeatedly, creating my voluminous luggage over time as I interacted with the world. Based on that, I might leave the knitting at home to avoid unwanted attention. Suddenly, I'm judged to be carrying unreasonable and unnecessary baggage, impacting my decisions negatively. (To be clear, even I think leaving the knitting at home is absurd, but not because of the reasons given. I think letting other's ignorance limit my actions is just that.... limiting.) This baggage can in fact provide a benefit in the form of lessons about how to approach a situation. Last time I asked a bus driver to drop me off at a particular stop and didn't pay close attention, problems developed. That part of my baggage helps me remember to remind drivers, even if I might be perceived as annoying. The label "nice" is not worth it if I end up in an unsafe situation. Sharing this acquired knowledge with others often backfires. I'm not seen as learning through experience and being prudent; I am perceived as holding one person responsible for another's actions. "How do you know this driver will forget about your stop?" In fact, I don't know. I just know that if they do forget, it will suck to be me. I do agree with Dave that determining if you are in the 95% situation or the 5% one and not treating one like the other is key. Therefore, if a driver is announcing each and every stop, I don't offer any reminders of my request. The thing that bothers me the most, and the thing I cannot prove through logic or reason, is the fact that my same actions done by a non-disabled person would be perceived differently. I have baggage. They're being smart. Leveling such value judgments at the same behavior done by different people is the first step in employing social control. It isn't far from "Why are you behaving in such a negative manner?" to "Nobody likes a negative person," to "Your bad attitude is why nobody will be friends with you." Do I sometimes behave badly? Of course. Is it sometimes because I used my experience as a person with a disability (baggage) and judge things badly? Definitely. How does this make me any different from a person without a disability who uses their experience gained over time? It doesn't. Why, then, is mine baggage and theirs learning? I'm just running with scissors, cutting myself and using more care the next time around.

Reason's Vanquisher

In excruciating detail, I can create a voluminous list of all the ways it is communicated to me that I am of less value because I am disabled. I can then offer explanations and arguments to counteract each item. My skills are sufficient to convince you that I have worth. Now if it would only work on myself. Reason is a wonderful tool that is not adequate to the challenge of conquering the emotions of irrelevance and devaluation that currently rule my insides. My reason lacks the tensile strength to overcome the indomitable force these negative thoughts and emotions wield. The depression I'm experiencing because of current life stress and mental health issues definitely saps reason's strength. It does not, however, generate the need for reason to be so powerful. the might reason would need to surmount the negativity is defined by the power of that negativity. What is responsible for negativity's capacity to overpower reason? Society in general and the individuals that act out its beliefs in particular. The thoughts and feelings an individual has about disability informs their actions and those actions transmit those beliefs to people with disabilities. Complimenting a mundane task demonstrates the lower expectations used to judge the person with a disability. Refusal to accept a "No thanks" to an offer of help illustrates devaluation of the disabled person's judgment. Even running up from behind to hold a door for a person with a disability conveys the assumption that the person was unable to do it themselves. Whether it is meant or not, whether it is intentional or not and whether the intricacies are understood or not, behavior communicates beliefs and those beliefs have power. A lot of power. Counteracting them takes a significant and constant force of will. It is a battle people with disabilities engage in each and every day. It is a war without an end in sight where victory is never possible because the "enemy" has an endless supply of assets. There are a lot of battles I'm currently fighting and they are consuming vast resources. I have nothing left to wage war against the societal devaluation that comes at me without end. Words and deeds matter. Take care that you are not unintentionally contributing to the strength of the negativity people with disabilities must beat back each and every day. And, if you need self-interest as motivation, remember that non-disabled people become disabled each and every day. The negativity you put out there might turn on you down the road. Do you want to battle it?

Acquiring Objectness

I and other disabled people have a unique talent. We can transform ourselves into objects. Here are some examples of people instantaneously morphing into things. When flying, I need help transferring from one gate to another. This is not true for all blind people, but it is what I do. The airport provides someone to do this and they are the people who also push passengers in wheelchairs. To avail myself of this help, I must wait until someone shows up and usually until the plane is largely empty. If I were waiting along with a man who uses a wheelchair and an older woman needing special help, likely as not you will hear one flight attendant call to another, "How many wheelchairs do we have?" Now, to be clear, they aren't asking how many wheelchairs are waiting outside the plane. They are looking for the number of people who need assistance. I get that they are using some sort of short hand, but really? They could ask how many escorts they need or even assists. There are ways to talk about me without me having to become a thing. Sitting on a bus, I listened as the driver tells everyone waiting to board, "I have to unload a wheelchair." Apparently I took snarky pills because I said, "Um, person?" He didn't reply. Finally, this happened to a friend who ordered a coffee at a local Starbucks. She did tell the barista her name, so I can't think why they then wrote on her cup "wheelchair." Seriously. It said, "Wheelchair." Was she supposed to pour it on as some kind of new lubricant? Clearly the chair didn't pay for the coffee...