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.

Through My Eyes

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." Blog's new home! People Aren't Broken

Good Today, Bad Tomorrow

Something is happening to me, good in the short-term, but leading to a problem of probable epic proportions down the road. In the middle of last week, I realized I want to be alone. Over the next few days, I discovered that I was actively avoiding human contact. Apparently, social me was unable to find happiness or peace unless isolated.

I have been here before, more at peace when it is just me, books, tea, and a soft blanket. It is necessitated by a lack of energy so profound that I am left choosing between survival and everything else – tending my emotions, trying to be a better person, and my social life amongst other things. While my choice of survival is fairly obvious, if I do not pay attention to my social life, it has an unfortunate tendency to crumble.

With no other viable options and a social life disintegrating, I avoid the entire mess. As counter-intuitive as it may seem, social interactions act as reminders that there is a world out there I currently cannot engage. Instead of constant reminders of this painful truth, I create a world where I can find pleasure in activities done solo.

Thus solitude has a few things going for it. It is easy to maintain, has no risk involved, and relies upon nobody to say or do a thing. I can fill my world with books that either thrust me into a reality imagined by another or, in the case of the memoirs I've been reading, allow me to feel a sense of kinship with other disabled people. If I select the right reading material, there is also laughter. When nothing else feels possible, this is not an unpleasant fate.

At its core, I worry this is a case of self-delusion: If I can convince myself this solitary existence is enjoyable, then I do not have to feel painful isolation. Perhaps it is more a case of a highly-evolved coping strategy. Maybe I am finding very complicated ways to convince everyone including myself that this is not depression. Possibly I'm afraid of confronting what my social life will become when I cannot nurture it and others, for whatever reason, do nothing. For better or worse, I do not have what it takes to cope with loneliness, so I pick the easier path of isolation.

Now for the inevitable problem I will encounter. Sooner or later energy will return to my body and then this world of isolation will no longer be a necessity. Instead, I will be hiding in it, avoiding the hard work necessary to reenter the human race. Life outside my four walls means interacting with idiotic non-disabled people who make me want to scream, constant reminders of how worthy of ignoring many find me, and all the typical challenges of social interaction. It necessitates balancing my need for human contact with my body's requirements. While I find other people to be energizing, there are costs to a social life, and leaving comfortable isolation to reshoulder those challenges is daunting. I will have to find the clarity to realize it's time to reenter the world and then the strength to do it.

Were a social life to fall from the sky into my lap, I would not throw it away as long as it did not require effort on my part and it possessed a frequency of human contact that would not leave me longing for others. Unless people are a consistent, reliable presence in my life and do the lion's share of the work, it will simply be painful reminders of what I have temporarily had to forgo. What people believe they are relieving with a random call or visit will in actuality be intensified.