Tag Archives: Myths and Misconceptions

Confession

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…It’s good for the soul, right?

Recently every time I turned around, there seemed to be a person with a cognitive disability. Whether passing on a sidewalk, riding on the same bus or the person helping me in the store, there they were. Everywhere. Over and over.

I am noticeably uncomfortable around people with cognitive disabilities. I never know what to say, do or think. Though not my finest trait, is my own discomfort a parallel experience able to teach me something about TABs?

A useful distinction can be made between my feelings and actions. My unease comes from a complete inability to figure out the person in question. I have absolutely no way of knowing the nature of their disability let alone their functional limitations. This means I don’t know if I should use simple language, speak slowly, ask questions to confirm understanding, repeat myself, or….. You get the idea. I don’t know how to relate and that feeling leads to my get-me-out-of-here impulse.

And, okay, I also have internalized a belief about people with cognitive disabilities behaving unpredictably. It’s not that I would be hurt out of malice or intent. Rather, they might do something that would be fine if I could see but disastrous since I cannot. That increases my unease.

And my actions? I take a deep breath, set my feelings aside and treat the person LIKE what they are — A PERSON. My only unusual behaviors involve word choice and meaningful eye contact. (Believe it or not, you can do meaningful eye contact without working eyes. I can’t explain how, but I’ve recently realized I can instinctively do it.) While I probably don’t manage to entirely hide my feelings, I do my best to minimize them.

Why? I know my reactions are based on stereotypes, misconceptions and ignorance. That is really the only thing distinguishing me from a non-disabled person who behaves sub-optimally around me. I recognize my feelings are not fair, reasonable or appropriate and take steps to remove them from my decision-making about behavior.

I think my point bears repeating in a slightly different way. How you feel does not need to be how you act.

My own vast experience around issues of disability makes it possible for me to understand my own internal reactions. Because most non-disabled people lack such a background, they don’t have a framework to guide them. Can they be given one?

While the bottom line about changing non-disabled people’s attitudes and actions around disability comes down to education and exposure, perhaps the message needs to be different. If my primary motivation starts with a desire to treat the person before me like a person, then maybe non-disabled people need to first be made to recognize our shared humanity. That lesson must simultaneously come with the message that they probably possess little to no accurate information about disability.

Unfortunately, when people feel ignorant, they tend to avoid the situation. I’m not sure how to convey shared humanity, ignorance and a necessity to not run away all at once.

Amazing Revisited. Again.

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Don’t roll your eyes, but I’m back to that “amazing” thing. Again. This time with something new. Promise.

I get to a doctor’s office via my dog, my feet and a bus. When the receptionist discovers this, she is in awe of me. Previously I’ve thought about this behavior in two ways. I’m amazing because I have failed to live down to the low expectations another individual has. I also become amazing when a person imagines walking in my shoes and decides I am doing something they could not. Now I think there might be a third possibility related to obstacles.

When people consider me going from point a to point b, they generate a mental list of all the steps that they think involve sight– assessing traffic to cross a street, determining what bus pulled up at the stop, getting on the bus and finding a seat, knowing what stop to disembark at and so on. Each of these tasks becomes tagged as “obstacle for blind person” in their heads. Because I have surmounted these obstacles, I become “amazing.”

This mental process is distinct from the first two, for there are no assumptions made about what I cannot do. The accolade is *earned* by doing things perceived as *challenging*, granting the praise the distinctive flavor of possibility. My amazingness is engendered not by doing the impossible but by accomplishing the unusual.

I have less objection when amazing is about overcoming an obstacle. I’m not performing magic, just doing something that might be hard. I can live with aspects of my life being perceived as hard, calling for skills most haven’t cultivated or even simply requiring above average persistence. It feels far less dismissive of…me.

Many people with disabilities, myself included, have issues with the concept of overcoming. The root lies in the fact that typically what we are seen to overcome is our disability, not the physical and social barriers society has created. To me, blindness is my natural state of being, so deciding that I have overcome it seems absurd. Do people of color overcome their skin color or the societal inequities and prejudice they encounter? Do cis-gendered women overcome their biology? Disability is a form of human variation that is an inherent part of the person possessing the trait. They’re not something you can discuss in terms of overcoming.

So, while being seen as amazing for overcoming obstacles is not totally insulting to me, I do take issue when the obstacle is perceived to be my disability. It’s like seeing me as amazing for overcoming my curly hair or extraordinarily narrow feet. The concept literally makes no sense. Fish, here’s your new bicycle. Ride it.

Running With Scissors

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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.