What Does It Take?

I'm convinced there's some unknowable and Mysterious Act that if I only discover and do, I'll get the support I need. Telling people I'm not alright hasn't worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn't elicit a single expression of concern. I'm beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, "What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?" What ever happened to unselfish compassion? Loving someone enough to do what they need even if it's inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I'm not talking about a one-shot deal here. I'm talking about consistently over a period of time being there for someone *because someone has to*. Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That's why people have a collection of friends, not just one. As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn't look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention. I don't want attention. I want support. They are not the same thing. If they were, then I'd be thrilled when people pour on the praise for my mundane "achievements." Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous. Instead, when I seek support, I get things like: "Jen, I can't even imagine dealing with what you deal with, so I don't know what to say to you." How about this: "I can tell you are truly upset and hurting. What can I do to support you while you deal with it?" Now was that so hard? "Jen, you are so inspiring. How you deal with what you deal with amazes me." Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful. "Jen, I can't watch you be so negative. It's too painful to me." Now the other person's pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible? "Jen, I know it will be alright." Great. Meanwhile, I'm in pain, but it has been dismissed as unimportant because it won't last forever. By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I'm fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?

Don't Watch!

There are times when I stand on the sidewalk, Camille Guide Dog Extraordinaire at my side, trying to figure out some navigational complication. Often I'm simply trying to "hear" what's going on. Passers by may stop and ask or offer assistance -- an appreciated gesture that I sometimes accept gratefully. Unfortunately, a response from me of "No thanks. I'm good," can result in problems. People step back and *watch*. I know this because when I get past the challenge, they might comment, my ears may pick up a slight sound or I can feel the weight of their eyes upon me. So, there I am, trying to sort out a mobility issue, while somebody hovers. It's creepy. It's annoying. It's rude. And, if I were sighted, it wouldn't be happening. Most significantly, it shows a profound disrespect for my own judgment for if I've said I can take care of it, standing to watch implies at least a suspicion I am wrong. Well, either that or some over-the-top fascination with how I function as if I'm an exhibit at the zoo. (I am not an animal in the monkey house. Promise.) There is one crucial fact that might escape the average non-disabled person. Taking time to listen to my surroundings allows me to deal with situations as I study them with my ears. I may be working through a set of circumstances that challenge my skills and if people always save my butt, I will never learn how. Saying "No thanks," can be me granting myself a learning opportunity. Those are good for me, right? I suspect people's motivation to stand and observe usually comes from a good place. They don't want me to get hurt. While I value the goal of keeping me in one piece, I still cannot stomach it when someone lingers. It's yucky. And did I mention creepy? So, I am declaring anyone who walks away when I say, "No thanks," off the hook if I turn out to be wrong and break a body part. Absolution is yours. But I know this won't be enough. Here's a way to handle it that helps the non-disabled person feel good about leaving whilst demonstrating respect for me. Tell me your concern while acknowledging your ignorance and taking responsibility for the discomfort you feel with moving on. "I don't know much about how blind people navigate. I don't know how you would handle x situation which is making me unreasonably concerned." Make it your fault – because it basically is – and see what happens. Since nobody has ever done this to me, I can't guarantee the response. I can say that it would feel better than the hovering. Much better. I encourage you to go forth and try it, then come back and leave a comment. I need data.

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

The Culture of Silence

A friend used the phrase 'a culture of silence' to refer to the normative standards of behavior, cultural beliefs, individual attitudes, social structures, and societal barriers that dissuade marginalized people from sharing their experience. Women keep quiet about sexual assault to avoid the blame and shame attached to speaking up. Transgendered people don't discuss their gender identity out of fear, at best, of being labeled "freaks." Poor people stay silent about their impoverished state so as to not be labeled a slacker, told they should just go find a job, or be pitied. In contemplating all the times I swallow my words, I have begun to wonder what part of my silence is tact and what part subtle duress? Then I came across a news clip about a student with developmental disabilities who was bullied by her teacher. What shocked me was not that such events transpired for I know such situations are common. I was surprised that the parents went to such great lengths to prove their child was not lying. Educators relied upon the

Service Models

Whether governmental or private, agencies aiming to help people function on the principle of doing the greatest good for the greatest number. Whatever their niche, their goal is to provide services and support to as many as possible. It becomes a formula composed of maximizing benefit while husbanding resources all targeted at the typical person trying to be served. Thus, support that does not attract the target population is discontinued and services not utilized by a significant number of people are viewed as wasteful. Think about the nature of people with disabilities as a population. Because of lack of access, we often are not engaged in community life. This lack of visibility means our need for access isn't obvious or immediate. Thus, there continues to be a lack of access and we remain undetectable. Even when we have full access, our presence is still in the minority, especially when we are subcategorized based on our disability-related needs. Because Deaf people need one thing and blind people might need another, we become separate items on a to do list and different line items on a budget. "Full access to all people with disabilities" becomes meaningless to an agency head when the reality of our differing needs factors into program development, planning and funding. To meet the needs of our seemingly small population, the expenditures of effort to become educated about how to accomplish it and the money necessary to achieve it are high. In contrast, the payoff in terms of benefiting a few people seems small. When the typical service model meets the needs of people with disabilities, things do not turn out well. Why would an agency expend significant resources to benefit only a few individuals? How can continuing a program that only serves a few people be justified? How do you overcome the seeming illogic of providing services when there is nobody there to partake of them? I have been confronting these issues for quite some time as I attempt to convince my local LGBT Community Center to make some changes that meet the needs of blind and visually impaired people. My basic plea, "I know there aren't a lot of us running around here, but this still matters" has not penetrated. They are an agency engaged in serving a specific population trying to make scarce resources stretch to meet that community's needs. Why bother with the needs of 4 people that will take away from benefiting thousands? Within the parameters of the service model they utilize, they are entirely right. In the past year, I have also worked with my local Pride organization. Theoretically functioning within the same service model, they have taken a different approach. "It's important." While far from perfect, there is at least a desire to provide the services disabled people need so that they too can fully participate in and enjoy Pride. The striking disparity of the two experiences has been heavy in the back of my mind. The conclusion that finally emerged is that those ingrained in the service model I've described do not suddenly look up one day and see the shortcomings of it. Until they do, there is nothing you can say or do that will convince them that inclusion of one disabled person is important in a way that exists outside of resource marshalling, the greatest good for the greatest number, and the bottom line. The funny thing is this: service agencies are there to help people. The bottom line is supposed to be the business of corporations and accountants. When did the business of helping become the business of exclusion, dollars and cents?

Inclusion Door

To my ongoing frustration, the theme of encountering ablism at every turn has not ended. One trend weaving its way through my experiences is the idea that entities make changes and provide accommodations "when someone asks for them," where someone actually means multiple people at various times. This leaves me with a question: Should you be required to knock repeatedly before the inclusion door is opened?

Riding The Bus With My Dog

Ever wonder why bus drivers need to announce *every* stop? Here's a great example. To conserve energy so I could attend a yoga class, I decided to take a bus one way to the vet's office. As usual, while swiping my bus card I told the driver my destination. After sitting down, I pulled out my phone to monitor the street numbers as they passed. My first mistake was in putting the phone away just before my destination. The driver did announce all the stops, which had me convinced she would also indicate the one I needed, even if she forgot I wanted it. That was my second mistake. She didn't announce my stop nor did she stop. When she announced the stop after mine, I called to her, "I wanted 39th?" I think her response was simply saying she'd gone past. When I got off, I inquired, "How many streets back is the stop I wanted?" "You should cross the street and take the other bus back," she replied. "Don't have time. Do you know how many?" "Two or three maybe. Sorry," was her answer, with the apology covering either her lack of knowing or her mistake or both. Armed with this wealth of information, Camille and I began walking. About the time I reached the second intersection, it dawned upon me that I would need to cross either on or off ramps for a highway. Having never done that in my entire life, I was a bit.... concerned. With a crosswalk and light, it was probably one of the safer ways to cross an off ramp, but without an audible signal, it was still daunting. I spent a long time listening to the traffic pattern trying to figure out how you timed things. I have to say that my little black dog was awesome. I might have been flipping out, but she was a total pro. And then we had to do it again on the other side of the overpass. Bus drivers are suppose to announce *all* stops whether they pull up to take on or disgorge passengers precisely so that blind people can get off where they wish. This driver's mistake put me in a pretty unhappy situation only mitigated by the fact that my dog is good at her job.

Ears

I welcomed the new year in with double ear infections – both sides, inner and outer. First, in defense of infants the world over, I have only felt that intensity of pain once before when my appendix was about to rupture. The ear pain had me curled in a ball on my living room rug at 2:00am begging the universe to make it stop. Sobbing. Loudly. Babies, in my opinion, should scream louder. Along with the pain, I lost significant amounts of my ability to hear. I could hear someone on the other end of the phone, but not someone standing next to me. I stopped being able to perceive the noise of my fridge for about three weeks. I was unable to walk in a straight line inside my own home. I couldn't hear if the pot of water on the stove was boiling or not. As you might imagine, this was a life complication. Once the pain was under control, it took about 48 hours for my brain to say, "Hey, we can navigate the outside world. Camille's good at her job. You should be able to hear audible crosswalks. AS long as you only go to places you know....." Around then, I stood up and the room started spinning. "Okay, maybe not if I'm experiencing vertigo." Once the dizziness passed, that's exactly what I did – went out and navigated familiar places while my hearing was limited. I'm still stunned at myself. Not amazed. Stunned. What attitude or approach achieved this ... result? This is a new adventure. Wonder what it will be like. Wonder what I'll learn. I credit this mindset to my December reading of Crashing Through written by Robert Kurson telling the real life story of Mike May's adventures in going from totally to legally blind. Perfectly content as a blind man, he was presented with the unexpected possibility of regaining vision with a new medical procedure. The book chronicles his decision and subsequent experiences. To boil it all down, he did it to – excuse the pun – see what it would be like. I was presented with a perceptual change and decided to embrace it as an experience. It went well. two months later, I have most of my hearing back, but they aren't sure everything will return. The nuanced auditory input I use for things like "Where did that thing land when I dropped it?" is effected along with trouble discerning traffic patterns, identifying the location of an open doorway and a few other things. I'm pretty much done sucking all the learning and experiencing out of this adventure. Fingers crossed that the steroids work.

When There Are Words

It's odd how having words to describe a situation changes how you relate to it. The mess going on inside of me hasn't actually morphed into something that is comprehensible. Having words, especially ones I can share with others, feels like the same mess is encompassed by some sort of boundary in which it resides without spilling over. I've already used many, many words to describe the portion of the mess associated with my feelings of isolation and lack of human connection. I now have a way to describe the other portion related to my Post Traumatic Stress Disorder (PTSD) and described in recent entries. I experienced childhood medical trauma that led to adult onset of PTSD. With therapy, I was able to manage the symptoms and make inroads into recovery. For me surgery of any kind bares enough similarity to my original traumatizing experiences that my brain tended to react as if it was trauma. Over a two and a half year period, I underwent seven surgical procedures and with each the PTSD symptoms were less – a net gain in PTSD recovery. Then, I was traumatized by events surrounding a surgical procedure. At the time, I did not respond significantly to the trauma aspect, instead suppressing much of the emotional response. With yet another surgical procedure on the immediate horizon, there has been a resurgence in PTSD symptoms including nightmares and triggering of flashbacks and body memories. Words. All neat and clean. I'm slightly worried that my ability to convey them in a calm manner is in fact me further suppressing my emotions and that what feels like containment is in actuality minimization of the real trauma I experienced. Guess we will find out.