Magic Words

Posted on May 1, 2013 by Jen

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.

Running With Scissors

Posted on April 17, 2013 by Jen

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 <a href=”http://davehingsburger.blogspot.com/2013/03/were-off-to-see-wizard-heart-brain.html”>his own personal baggage.</a> 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.

Through My Eyes

Posted on March 21, 2013 by Jen

When I meet a TAB (temporarily able-bodied) person, they are not the first, second, or even third member of that community I have encountered. Having grown up in non-disabled society, I am very familiar with what it means to be non-disabled. I know about mortgages and kiddie carpools and working moms and stay-at-home dads and midlife crises and divorce and being elderly. I have been steeped in non-disabled culture to such an extent that it is second nature to understand the lives of the non-disabled people I meet every day. I don’t need to have lived the experience to relate to it because of my massive exposure.

I am quite often the first disabled person a TAB has ever met. That individual has no frame of reference, no vast exposure, no years of observing other disabled people to help them relate.

Instead, TABs rely on other means to understand such as imagining what it would be like if they were blind. Unfortunately, lacking any knowledge of the specialized training I’ve received or years of experience I’ve gained, TABs can create a very skewed impression of what my life must be like. They then call upon this inaccurate perspective to attempt to comprehend, evaluate and judge my life.

These efforts fail miserably resulting in things like: “Wow, you are so amazing. I can’t believe a blind person can…” “I’m so inspired by you.” “It’s such a shame you can’t see.” “You must not be totally blind because you just…” “You can’t see, so let me do that for you.”

People can become very entrenched in their beliefs, assuming thirty seconds of imagining what it would be like to be blind is more accurate than the reality I–a blind person–describe. I’ve had arguments. Lots of them.

TABs thinking they understand what it’s like to have a disability better than someone *with* that disability are not limited to imagining walking in our shoes. Basic beliefs about how the world works can inform reactions. Those who think people are essentially good have trouble comprehending someone being unkind to a person with a disability. Customer-service people tell me to ask my neighbor to read my mail believing they would read the mail of their theoretical blind neighbor. Folks who believe our social-welfare system is adequate and flourishing act like I have help coming out of my ears to accomplish any task I want. How a person sees the world impacts how they see my life.

I’m discovering this phenomenon of “I know better about you than you” is more insidious than the smell of skunk spray. From strangers, it is somewhat excusable for they have little data to use besides their own imaginations, view of the world and some dimly remembered after-school special. Friends, however, should in theory know better because they have evidence gained over time both through observation and direct conversation. And yet, often friends of years fall back on this attitude of knowing better than me what it is like to be me.

This phenomenon is not unique to the disabled versus non-disabled populations. Men think they know what it’s like to be a woman better than women. “Oh, honey, that guy in the hardware store wasn’t being condescending. You’re overreacting.” Those outside a marginalized group often dismiss what a member of that marginalized group conveys about their experiences substituting their uninformed outsider view for that of an expert.

When, exactly, did it become reasonable, let alone smart, to take the opinion of a lay person over that of an expert?

I just lost a friend because of this. He firmly believes that his assessment of how I’m reacting to my current emotional turmoil is somehow more valid than my own. He’s never lived through any of the things I’m struggling with, but he is certain it’s perfectly reasonable and possible to handle them in a better way. I refrained from saying, “How about you try and let me know.”