Thursday, December 23, 2010

Gone Fishing

Actually, if I were willing to brave the insane cold, I could be fishing since I'm staying on a lake.

This blog will be unattended from now until the end of the year. I am doing
the family holiday thing. Catch all of you in 2011!

Wednesday, December 15, 2010

I Have A Dream -- For Help

This entry is a companion piece to The Privilege of Preference.

As complicated as help is in the big, wide world, it is even more convoluted in my own mind. In my childhood, I somehow absorbed the notion that people would not like me if they had to routinely help me. I bought into the idea that asking for another's aid is inconveniencing.

In addition, I feel a strong compulsion to be grateful for whatever – and I do mean whatever – help I receive, regardless of whether it's useful or detrimental. Expressing preferences becomes a tangle for who gets to want when someone is helping them get what they need? While I rationally know all this is absurd, still it lingers for things learned over time and reinforced by experience are hard to alter with logic.

Consider some of my routine experiences: I have been walked to the wrong place and left there not knowing it. I have been given inaccurate information because the person thought they could get away with not looking since I can't see them. I have been treated badly because I expressed a preference in a seat at the airport. I was flatly ignored when I told a restaurant their Braille menu was unusable. I was the recipient of annoyance because I wanted something to match a specific color.

What I have learned from experience is in constant conflict with my belief that I should be treated with respect. A strong sense of fairness grapples with the undeniable reality that I need help and getting it must come first. Whenever I need to ask for assistance, all this comes into play.

The stronger my sense of self-worth becomes the angrier I find myself. Disrespect of my needs makes me dig in my heals about respect for my wants. It would be easy to dismiss my conflict, anger, and obstinacy by declaring me emotionally messed up. While that might be the case, I challenge any TAB to experience what I do on a regular basis and not have similar baggage.

Before I even consider asking for help, I run through a mental list: Can I do this myself? Can I find somebody who will barter favors? Who should I ask this time around? How do I ask so that I know they will refuse if it's a hardship? How do I arrange things to minimize the effort someone has to invest? Only after I have waded through all these questions and struggled with my own issues do I seek aid. Even after all these years, it still stresses me out. Heaven help me if it is somebody I've never asked before.

I don't think people realize the thought and preparation that goes into me requesting assistance. Or, well, I like to think they do not comprehend any of it given some of the ways they behave. If people acted as they sometimes do knowing all my prior groundwork, it would say things about humanity I simply refuse to believe.

In my dream world, help is offered willingly with no expectation of gratitude and a commitment to the helpee receiving aid that is what they want and need. In return, helpees would express appreciation and make clear what helping means in terms of time and effort. Assistance would not be offered out of obligation or when resentment is present. A "thank you" would end each interaction.

Help is an opportunity to do something good. Why can't it be that simple? A chance to be kind. A chance to show you care. A chance to be a positive force in another's life. A chance to live up to human potential.

Wednesday, December 8, 2010

I Wish Happiness

When I find out somebody is pregnant and want to wish them luck, I say, "I hope you have a happy baby." Though the typical blessing is "healthy," I refuse to say that because I firmly believe after years of experience that health is not a guarantee of or required to achieve happiness. Helpful? Yes. Necessary? No.
Happiness is one of those nebulous concepts that we know when we feel it, but cannot define in concrete words. Moreover, it is not restricted to one specific feeling rather a term that covers multiple distinctive emotional states. Between the different kinds, comparisons can be made. Euphoric joy is better than satisfaction, both superior to contentment, yet all encompassed by the word happiness.
For a long time, happiness wasn't even a state on my radar. I was too busy being miserable about my chronic illness, wishing it would go away, and planning for the great life I would have when. Constant yearning unfulfilled is pretty much happiness toxin.
Finally, it dawned upon me that healthiness was a part of able bodied culture that I had swallowed as essential to my happiness. It took time, but eventually accepting my health status allowed me to be happy. For me, it was about taking what I had and making that into a happy life. Very pioneer spirit in a weird sort of way. Don't have a pen and paper to draw a map? Use a stick on the dirt or charcoal on birch bark. It's about using what's at hand to get where you are going.
And then I unthinkingly fell into the decision to work on getting healthier. It proved to be the hardest thing I have ever done in my life taxing every emotional resource I possessed. When you are focused on your health in such a single-minded way, every sign of progress or regression is noted. Each symptom is cataloged and analyzed. Did eating that food make my pain worse? Was I too drained after that hike? Did a particular supplement improve the situation? A step forward was success and a step back was failure. Given the nature of my chronic illness, I often felt failure. Life was a constant emotional rollercoaster with my health the driver.
Even though my health was a slowly rising spiral, eventually I realized I was cracking under the pressure. Multiple times I tried to shift my thinking without success. Finally, it came to me that I needed to return to making the most out of what I had fashioning it into a happy life.
So, with an improved health situation giving me more resources, I did just that. In the process, I realized something very important: health while not crucial to happiness did make it easier.
Over the past year, my health has been all over the map, yet I would not hesitate in saying this has been the happiest year of my life. I haven't completely sorted this all out, but I have become more convinced than ever that our cultural emphasis on health being key to happiness is total crap.
To me, the essential part of happiness is maximizing what you currently have and shaping it into something you want. Waiting for some distant day when you might feel better in order to be happy seems rather pointless to me. Then again, I do have a weird way of looking at the world.

Wednesday, December 1, 2010

The Privilege of Preference

Helping is complicated for everyone involved. Is the want-to-be helper going to offend the potential helpee simply by offering aid? If the helpee agrees, will they get the assistance they need? Are there strings attached to the proffered help? Will the helpee even appreciate the efforts of the helper? Even if all parties enter into it with the best of intentions, and I am limiting this discussion to those circumstances, there are so many ways it can go horribly wrong.
The number of times I have received help is greater than the sum total of water drops in the ocean. For me, it is a fact of the reality of disability and so too are the consequences of help gone wrong. One particularly thorny aspect of accepting assistance is the role of individual preference and opinion of the helpee. Here I am speaking of personal whim, not that based on concrete need.
For example, I might need help finding a specific item in the grocery store and ask a random stranger for aid. Do I then have the right to drag the person hither and yon in search of the exact brand of butter I prefer? If I have asked someone to guide me, should I be criticizing their guiding technique?
To the helper, a helpee having preferences or opinions can at the least seem like ingratitude. The helper is taking time out of their day to be of assistance, but that is not enough. They must cater to the whims of the person as if once they've agreed to help they have become an indentured servant. A brand of butter cannot be that crucial. The nuances of guiding cannot be critical over a short distance. Shouldn't the person asking for the help take steps to minimize the amount of effort for the helper? Appreciation and not taking advantage of somebody seem like reasonable expectations to have.
At the same time, we all have predilections. In asking for help, has the potential helpee also relinquished the right to likes and dislikes? If I want a red water bottle, should I be resigned to buy a blue one because red meant sorting through the contents of a shelf? Are those of us routinely in need of assistance destined to never quite getting what we want?
Because of my disabilities, I have a highly developed sense of need versus want. With energy limitations, I must focus on what is important. Needing assistance which can be in short supply, I have to set priorities. What I need forms a longer list than that of a TAB. I have requirements related to food allergies, location of objects, alternative formats, transportation, organization for location purposes, websites, and more that are not need-based considerations for the average TAB. All of this boils down to my wants not often appearing on my personal radar.
So, when I have a desire combined with the energy and assistance needed to fill it, I get picky. Maybe it's a sort of territoriality. Maybe it's about the way I must approach my life in order to be a happy person. Maybe I'm just difficult.
When those helping me have behaved as if my wants are not important, I have felt like my need for aid means I should not expect the privilege of preference. This makes me angry because it seems like a reflection of the devaluation I experience continually. My desires being superseded by the convenience of someone who consented to help feels like the same old second class citizen status disabled people have been trying to shatter for years. Do I truly matter that little?
Honestly, I'd rather people said that straight to my face in clear language. "You don't matter as much as I do because you are disabled and need my help." At least then everyone would be on the same page. Instead, people who have consented to help get irritated by me having wants. I am often tempted to ask them if they deny themselves what they want too.
In availing myself of help, I do all the right things – ask for what I need with sufficient information so the person can make an informed choice, say please, express appreciation, and for friends bestow random baked goods upon them. Is it too much to believe what I want should matter?

Wednesday, November 24, 2010

Within One Woman

For me, the disabled community's divisive, fractured state evokes sorrow. It isn't simply that divided our power is diminished or that any one group trying to raise themselves up on the backs of others is disheartening, rather that I can see the common ground so clearly and yet it remains fallow.

Everything about me and my disability categorizations comes together in that untilled plot of land for I embody many of the ways the members of our community live. Born disabled, I acquired a different type of disability as an adult. I have static disabilities and those that fluctuate. I can accommodate some to the point that they are mere nuisance while another cannot be reduced no matter what I do. some can be seen while others are invisible. One is entirely an artifact of our societal structure and beliefs. Some TABs can easily comprehend whereas others are beyond most's ken.

Looking back, I cannot pinpoint the moment I went from understanding each of my disabilities separately to identifying with a broader disability experience. Though I can still recognize how aspects of each shape that experience, none exclusively or even mostly defines it. I am not blind. I am not chronically ill. I am not disfigured. I am disabled.

To me, so many aspects of disability are universal defining our common ground. Each of us is acquainted with how it feels when another has lower expectations because of our disability status. With the popularity of the internet, we all can identify the instant someone realizes we are disabled and have struggled with how and when to tell someone. Frustration at another's inability to understand is familiar to us all. We have all wanted to do something only to realize we can't. None of us are disabled without that simple fact impacting our lives.

Why, then, do we insist upon being splintered in to factions that struggle against each other? I know part of it is economics and politics for the pie of social welfare doesn't get bigger when the need is greater, rather we must fight each other for a morsel of it. I know part of it is the different ways TABs view our disabilities. They divide us and compare us, making it reflexive to follow along.

Constantly we struggle to educate TABs that our status as different means we are not the same as the non-disabled community. The idea that different equates to "less than" is one we've tried to banish from human thought. So why do we turn around and allow our differences to chop us up into pieces?

I have no answer, but I do have a sense that it is about our subconscious and ingrained socialization so deep that it is instinctive. Our identities – our way of looking at the world – starts from inside each of us. As infants, we figure out that this is our foot and that is the blanket. It seems natural to sort out the world in this way and I believe we do it as adults without thought.

AS we educate TABs that disability is not the end of the world, that our difference means we are not the same as opposed to inferior, and that society's structure is far more limiting than any anomaly we possess, I wish we would apply those lessons to ourselves. Until we start standing on our common ground and speaking not about my truth or my experience but about our truth and our experience, I think our tendency to divide ourselves will keep us from moving forward.

I am fortunate to have so many varied disability experiences intersect in me. I am not blind, I am not chronically ill, I am not disfigured. I am disabled and it makes all the difference, in a good way. For this I am grateful.

Wednesday, November 17, 2010

Eyes and I

I am now the (proud? confused? overwhelmed?)owner of two prosthetic eyes and for the first time in my life, my eyes not only look normal but also match. Very intense experience.

Choices had to be made about the way my new eyes would look. I could have instructed the artist to copy pictures of my old eyes. I could have instructed him to do just about anything. Instead I chose to have "normal" eyes in my face. It was a terrifying thing to choose because I knew it could change absolutely everything.

For quite some time, I have believed that plastic surgery has risks that at least for me far outweigh any potential benefit. In my own life, I have paid dearly for my "normalized" appearance. In fact, I pay a price every day because of chronic pain etc. More reconstructive surgery to "improve" my face seems like a worse idea than jumping off a five story building.

I know I have given people the impression that I don't care about how I look, but that's not quite the truth. In actuality, I care about the impression I create, but not in the typical way. I want my outside to feel like my inside. While I have rejected traditional standards of beauty, I do have my own desires that boil down to me visually embodying the sassy, witty, animated, quirky woman I know myself to be. Freed from societal beliefs about what beauty should be, I have been able to be how I want to be and pay only the price I deem reasonable.

Deciding to have "normal" eyes was a tough decision, but I came to realize that intentionally looking different was a deliberate choice to violate appearance norms. It felt like being different not because different happened to coincide with what I wanted but merely for the sake of being different. That's not the type of person I want to be. As you know, having an abnormal appearance does have costs especially in terms of how others treat me. Any decision to continue looking "abnormal" would be the equivalent of choosing those bad annoying behaviors. It would bring a degree of negativity into my life that I do not want and would feel responsible for its continuation.
Total honesty dictates I also admit to wanting to have "pretty" eyes. Maybe it's internalized social norms. After all, my eyes were the most "abnormal" part of my appearance. Maybe that type of eyes fits my internal image of myself. Maybe I'm a complete hypocrite. You decide. All I know is that deep inside I wanted them.

My reasons here seem very clear and logical. There's a cleanness to the whole process that, trust me, wasn't present while I was working through it. Even now I have a sense of betraying my own beliefs with this choice.
No matter the decision I made, I knew I would never feel quite the same. Yet again, I would be faced with adjusting to another version of myself. As a child, surgery after surgery, I wrapped my mind around the new face molded from flesh and bone. Now I must expand my reality to encompass this new version. Can't quite count it, but I think maybe Jen version 5.2.

[A follow-up to this entry can be found at
It's in the Eyes.]

Wednesday, November 10, 2010

The Contents of a Heart

Oprah proclaims, the Flirtations sing, and our parents teach us that the most important thing in life and the measure of our worth is the quality of the intimate relationships we form. This lesson takes the emphasis off the superficialities of economic status, professional achievements, race and background to focus on who we are as people. It stresses love as the purpose of living and is meant to make us kinder, more caring individuals.

Currently the trappings of success are not evident in my life, so this lesson should be a comfort to me: my disability limits my energy not my heart's ability to care about others. And, yet, instead it seems to mock me. I could be a saint, but few would know. I could be filled with hate, but this too would be rarely known. Without basking in my kindness or withering before my malevolence, how can the nature of my heart and therefore the quality of my love be witnessed? It's like the proverbial tree falling in the woods with nobody to hear it.

I have given this conundrum careful consideration and realized its inherent irony: I lack the trapping of success in my life and this only emphasizes more my difference. For whatever reason, that difference makes people les likely to see me as potential friend. With fewer friends, the contents of my heart is evident less.

So, what's a person to do? My handful of friends get a lot of attention for I have time to listen and space in my head to keep track of important things in their lives. When one bemoaned her inability to do the same for me, we thrashed it out and discovered it is all about math. People have a specific amount of attention to lavish on others. This amount is defined by both the character of their heart and the busyness of their lives. It is then apportioned out amongst their friends – more friends translates into less resources for each person. Most won't simply spend this fixed amount on each friend they have, but devote more to some and less to others. While detached and calculating, this theory explains why people with a vast circle of friends often bemoan not having many intimate connections. And while it also makes clear why my friends say I spoil them, it hasn't solved my problem.

I have made an effort to look for ways I can extend kindness to relative strangers such as baking treats for a memorial service or offering support to somebody I thought needed it. The person thought I was weird and the jury is out on the cookies. I have tried enlarging my circle of intimates by how I interact with friends of friends. No luck yet. Short of hanging out a sign advertizing myself as a stellar friend, I am out of ideas, so I ruminate on the cause.

Over time, I have noticed a decrease in the number of people who have obviously misguided notions of disability. Total silence upon forced interaction with me is no longer the norm. The offer of a guiding arm has increased and being dragged by some body part decreased. Tolerance is on the rise and fills me with joy. People beating down my door to become a part of my life has yet to happen. Why?

Whether it be from school assemblies on how to interact with other disabled students, picking up tips from watching movies, or experience, people have more information about how to behave with a disabled person which explains the increase in positive casual encounters. An understanding of what it means to be disabled does not come with knowing to face a Deaf person when speaking or that service dogs should not be distracted from their jobs. This lack of understanding seems to be at the core of my dilemma.

Since I have always been disabled, I can only offer educated speculation. I used to think people rejected me as potential friend because of the hassles my disability would inherently create – I can't drive to meet them, they might need to function as sighted guide, and who knows what else. While this is probably true in some cases, over the years I have come to realize it is usually more basic. Most people think of disability in terms of what it means the individual cannot do. This laundry list is a barrier through which it is hard for a disabled person's assets to be perceived. When they meet me, people think about all I cannot do because I cannot see as opposed to noticing my quick wit or empathetic tendencies. It isn't a matter of me being considered for friendship and rejected. It is a matter of me never being in the running because I am not a person but a collection of inabilities.

This explanation offers comfort in that it is clear this has nothing to do with me. Unfortunately, the potential solution is time. Just as people have become more educated about how to behave around a disabled person they will also begin to see past the barrier of inabilities to the person. Then I will have a chance for my value to be defined by the love I bestow. Until then I am left to spoil those in my life and ponder the wording of that "stellar friend" billboard.

Wednesday, November 3, 2010

American Citizenship

Yesterday I went to my local polling place and voted. For the first time since 1996, I was unfettered by either pragmatic or attitudinal barriers. It may seem like such a small thing, but it is anything but.

In 1996, I realized my new status as a totally blind person meant I would have problems voting independently, so I began researching what accommodations would be provided. None. I had to fill out my ballot by instructing another on how to complete it. Offending my every sensibility, I refused because I possess a strong belief that how I vote should be between me, myself, and I only shared with those of my choosing at the time of my choosing.

Lawyers were necessary to force implementation of a simple method by which I was easily able to vote. It was also the last time in ten years that it would be possible to have a good experience.

When I moved to California, I researched my options and again found I was denied a secret ballot because of my disability. Like in Massachusetts, I contacted all the right people, but by then laws had clarified my "rights" and a secret ballot was not one of them.

It took the Help Americans Vote Act of 2002 and its requirement that machines be accessible as of January 1, 2007 for me to walk into my polling place and vote privately. Between 1996 and 2007, I remember voting exactly once in the 2004 presidential election. Since 2007, I have voted in all general elections and many primaries.

It may seem like a small thing to have a secret ballot, but anyone with a knowledge of constitutional history is aware that our founding fathers expressly wanted those who voted to do so unfettered by pressure which meant a secret ballot. Unfortunately, it took until 1920 for women to even get the right to vote, 1965 for us to address the issue surrounding blacks voting, and 2007 for disabled people to be able to do it with the same sense of freedom white men have enjoyed for over two hundred and twenty-five years. Collectively America should be ashamed of itself.

As we all know, laws only do part of the job and my voting experiences since 2007 reflect this. My polling place was staffed with the same set of elderly people for about three years. It often took more than two people twenty minutes to set up the machine. After a couple of visits, I was recognized upon sight and if I had missed an election, it elicited comments. This did not give me a sense of privacy. Exercising my right to vote meant excessive waiting, being clucked over by pitying people, and having my voting habits noted.

Yesterday, I had to force myself to walk the several hundred yards to vote. Guess what? There was a staffing change! Nobody acted like they knew me and the machine was ready in under ten minutes accomplished by only one person. It was amazing. For the first time since 1996, I felt good about voting. I had the extremely rare emotion of pride in being an American.

Seriously, why does being a Disabled American mean I feel alienated about 95% of the time? The simple act of voting like everyone else should not be a struggle. Being disabled should not be such a fight. Yet in the United States, especially in these economic times, we collectively live on the edge with unemployment rates that are six times the national average, benefits that are being cut, and the laws designed to force our right to access ignored by the very government that penned them. I know having food on the table of every American comes before my ability to vote comfortably, but neither issue is being addressed instead the debate is over whether or not to increase taxes on the wealthiest 1% of our population.

Can we declare a temporary time out while everyone evaluates their bad behavior and figures out how to do better? It works on four-year-olds.

Wednesday, October 27, 2010

Under a Microscope

When I am not Becoming Invisible, I exist under a microscope. each motion of my cane, gesture of a hand, or choice in wardrobe is noted by somebody somewhere. While I may be disappeared because people do not understand, I am studied by those trying to understand.

My Disability Partner In Crime directed me to this poem that articulates what it is like to be under constant observation

Following Eyes, even friendly ones, watch what I do and how I do it. It satisfies a curiosity about the way I accomplish daily tasks making me an involuntary educational opportunity. Since I cannot observe people doing it, the act becomes something slightly voyeuristic.

To find out if I need help, Following Eyes monitor me. It's a constant vigilance born of good intent, but still means I am studied. Implicit in that is an inherent doubt about my ability to do something and ask for help when needed. Ironically, I ask for aid less when I'm being scrutinized for "mistakes."

Have you ever noticed that when a disabled person says something makes them uncomfortable, they are often told why someone's intentions should nullify their feelings? I get this from the best of friends who understand disability in all ways possible for a TAB. I hate being continually studied , but because the intent is to learn or help, I am suppose to miraculously be fine with it. Guess what? I'm not fine with it.

I use the phrase "flying under the radar" to describe a state of being where /Following Eyes do not track me everywhere. Unlike becoming invisible, I am simply a person going about her life as much a member of the ubiquitous "public" as the next person. I crave being able to simply be myself perceived on my own terms.

Part of the problem is that I am often the first blind person an individual has ever seen. Curiosity is natural as is a desire to help. Neither gives the Following Eyes any less weight or invalidates the invasion of my personal space. What gives us this sense of privacy is a collective tendency people have of not watching every move another human makes.) With Following Eyes, I achieve personal space only if I ignore what I know is happening.

Can you guess who doesn't have Following Eyes? Close friends who have stopped being constantly conscious of my blindness. Assuming I can do something, knowing I'll ask if I need help, and not being fixated on how I accomplish a task, they look at something more interesting. It becomes a vicious circle where the solution encourages the problem for the familiarity that turns me into something unremarkable is only achieved by exposure to me with observation if not an essential component at least a highly likely side effect.

I cannot impress upon you enough how uncomfortable it is to be watched. Constantly. It's probably akin to someone you don't know undressing you with their eyes ALL THE TIME. Imagine what that's like and get back to me about intent – they're not touching you or even suggesting they do -- nullifying discomfort.

Sunday, October 24, 2010

Now and Then

I have been poking around in this blog reading old entries and came across Multiply Chronic Illness by the Power of Two. Several realizations struck me simultaneously.

Last year, I was terrified that something would transform my current health status into a creature far harder to handle. What I had achieved felt as fragile as spun glass. Looking back on 2010, I have experienced so many health-related attacks on my body that I actually lost count, yet I'm still here and have bounced back. Was 2010 all about me learning that my health isn't as tenuous as I fear? Do I have more physical resilience than I realized?

Somehow though this year has embodied medical insanity, I look back and have an impression not of spending days and days on my couch, but of spending finite periods. While my health might have loomed large and felt overwhelmingly out of control, it has only been a part of my life not my entire life. Perhaps the vast amount of it caused me to stop focusing on it in order to not lose my mind. Maybe in crisis I found a new way to be happy. I'm still not certain, but I am not objecting.

Besides a sense of physical resilience, I have recently been surprised – dare I say amazed – by my emotional elasticity. Long about August of this year, I had taken a few too many emotional blows and was just trying to not fall apart. Then I had to put my dog to sleep and totally lost it. I went beyond numb to a state I can best describe as utterly empty. Things did get better, but I didn't reflect upon it until mid September when I suddenly realized I felt like myself. I'd recovered faster and more completely than I thought possible for anyone let alone myself.

Perhaps because I feel more physically resilient, maybe because I have a sense of emotional strength, or possibly because I'm happier, I am not nearly as terrified to share my life with another person. Yes, there are definite challenges, but several of my concerns no longer ring true. For example, I have more going on in my life than books and crafts. Last week alone I left my house seven times exclusively to be social. No longer do I worry about being duller than burlap. Now it's more like tarnished metal.

Another shift has crept up slowly. Now I am able to predict my health status making a marked difference in how I approach life. Planning for future activities happens without having to think, "Will I be healthy enough?" A future filled with more than my couch and cotton candy entertainment seems likely.

Even this blog has made a difference. When asked what I do, I say, "Write a blog about disability stuff," and it feels like enough. I contribute to the world in a way that matters, at least to me.

Some things are still the same, such as how I address the issue with someone. Do I let them see the entire reality immediately or gradually? Who would sign up for this? Would I be able to stomach allowing someone I cared for to join this insanity?

Relationships are hard and they fail often with far less in the way of built-in stressors. Can I really hope to have one that lasts a lifetime? Maybe. Just maybe. That's a different answer than I would have given even six months ago.

Wednesday, October 20, 2010

Kinder Gentler Jen Gone Awry

The past week has been all about realizing how I have allowed others' perceptions of me to shape my thinking. And, let me tell you, it's not good. I even know the route cause and the situation is entirely of my own making.

It began a while back when I decided to become a Kinder Gentler Jen. Accused of being "too independent" and having offered assistance rejected once too often, I decided to take a step back and go with the flow. Perhaps it would make life easier teaching me something important along the way. guess what I've learned? The expression about easier not necessarily being better has major merit.

The KGJ (Kinder Gentler Jen) Approach translated into two major changes or should I say capitulations, the first related to yoga. I have been taking classes entirely composed of non-disabled people since April 2009. Once I discovered the teacher whose approach best suited my needs, I let him dictate how I functioned in the classroom. His room, his rules, so I didn't move around without a guiding elbow, someone retrieved all my props, and I wasn't allowed to do things alone other students routinely performed solo. Tentative chirpings about being less dependent were met with observations that my ego was getting in the way. Rather than blast my teacher, I let it go thinking maybe he knew something I didn't.

A couple of weeks ago, as per usual, I sat on the floor at the end of class waiting to be retrieved. A student came by and said, "Oh, don't worry, he didn't forget you." It was in that moment that I realized a situation I allowed to happen was perpetuating images of disability I loathe.

The true extent of the problem emerged when I discussed it with someone, who has a good sense of disability issues, but hasn't known me long. He was baffled at my behavior, and questioned why I wasn't pushing back insisting upon treatment that felt right to me. Awareness of my passivity and tolerance of ablist attitudes crashed over me light a ten foot wave.

And that's not even the worst of it. Looking for a means to change the situation, I considered how to start doing what was denied to me. While I could sort out the mechanics, I realized I had no faith in my ability to carry them out. another's doubts had literally caused me to feel less capable.

My KGJ (i.e. Wimp) Approach extended beyond the yoga studio to friendships. Routinely people decline my offers of help or stop my efforts because a sighted person can do it faster, better, or easier. Before, I would get pissy, but now I simply accept it and walk away.

Recently when I mentioned ability in an area, it resulted in a request for help. I was literally shocked and ridiculously grateful which led to realization and more shock. Somehow I'd become convinced I had nothing to offer others that couldn't be done faster and better by another. Thinking back, I even noticed times when I should have offered aid but did not because I felt my efforts would be inadequate.

In other words, people thinking I can't do things combined with me not challenging those notions has eroded my sense of value and ability. It's... disgusting. On an intellectual level, I always knew how a person was treated impacted their self-assessment. Naively I assumed myself immune. Something about living so outside "normal" and "typical" endowed me with protection. The unfortunate truth is that I am not only influenced by others but don't seem to know how to fight back. KGJ has gone from an experiment into ingrained behavior patterns.

You have no idea how much this rocks my world in a bad way. This leads to a question: Can you kick yourself in the ass? Maybe I should consult the yoga instructor on how to go about it.

Friday, October 15, 2010

Canes Can Do More Than Tap Side to Side

Believe it or not, today is National White Cane Safety Day. I guess I was suppose to cover all my canes – I own six – in bubble wrap or something. I'm obviously a neglectful CaneMom. Instead I'm honoring them with a top ten list of ways these canes have been useful in arenas other than navigation.

10. A snake catcher. My friend swears my cane looks identical to the one in that movie with snakes on a plane.

9. Retrieving items that have rolled under the stove or refrigerator.

8. hailing a cab in NYC.

7. Checking the depth of a pool's shallow end.

6. While standing still to watch a musician's street performance, perching my hat on it's top.

5. Entertaining cats.

4. As the stem of a flower the year I was an even bigger flower for Halloween.

3. Measuring the empty rooms of my new apartment. My bedroom was something like 2.5 canes in one direction and 3 in the other.

2. Hanging wind chimes. In college, our rooms had these pipes near the ceiling for the sprinkler system. I stood on my dresser, tied the wind chimes around the pipe, then used my cane to push them over to the middle of my room.

1. To get a turtle out of the middle of a road. Rain was coming down in sheets as we drove up Route 116 near Amherst, Massachusetts and we came upon a turtle pretty much volunteering to be road kill. We were worried about touching it – it might have been a snapper – so we used the end of my cane to poke it in the most tender place on its backside. The procedure was continued until the tortoise reached the safety of the road's shoulder.

Wednesday, October 13, 2010

Inspiring Lower Expectations

Tell a TAB that they are inspiring and the person will be aglow with pride. Compliment me in the same way and I'll duck my head and try to become invisible, which of course never works when I want. It is almost as bad as being told I'm amazing.

A seatmate on an airplane asked me a crucial question, "Isn't it good if by your example you cause another to do something worthwhile?" Since nobody can argue with that result, of course I agreed which began me thinking. What is so objectionable in being an inspiration?

I realized there are two forms of inspiration: the role model type and the amazing flavor. They differ in that in the former inspiration has led to act and achievement whereas the latter is focused on emotion.

Their common ground is that of expectation. In order for something to inspire, it must seem out of the ordinary for human behavior. An obstacle assessed as insurmountable must be overcome. Circumstances determined as utterly bleak must have been successfully plumbed for happiness. A perceived burden must be shouldered as though it is feather-light.

If it were simply about behavior out of the ordinary for human beings, I would have no objections to engendering inspiration, but it's not. People based their expectations on the limits they assume my disabilities impart. These constraints are typically based on socially perpetuated beliefs about disability as opposed to the reality. Thus people think I can't bake, so when I do they find it inspiring. This makes me crazy.

If the inspiration leads to an individual behaving differently and accomplishing something, I have more tolerance. Perhaps this is because the inspired person has perceived us to have common ground. They are not viewing me as other and setting the bar lower as a result. Instead they realize my reality has traits familiar because they are present in their own lives and use an identical yardstick to measure both of us. This feels far less like being thought less competent and hence less objectionable. It also helps that a person is getting more out of the comparisons than a surge of emotion.

It dawns upon me that there is a subset of inspiration that has always been nebulous to me. I tend to engage in these discussions when people start gushing about my amazingness and I feel obligated to object. Sometimes the person says something like, "I can't sow, so I'm amazed you made that skirt." When questioned, they seem genuinely convinced that it isn't my blindness that makes the act seem extraordinary, but rather the common ground we share as human beings.

So I suppose my objections to those who find me inspiring are solely related to whether or not the person sees us as the same or different. It's about whether they use the same yardstick to judge me as they use to judge themselves. The instant my disabilities inspire them to create a separate set of expectations, it becomes insulting. If the expectations were higher, I'd probably find it irritating, but somehow they're always lower.

Wednesday, October 6, 2010

Body Image Rears Its Ugly Head

This is hard to write, not because I'm unearthing unfamiliar feelings but because I hate contemplating what it all means. Bottom line is that I feel like I've been incredibly wrong and failed. Both make me a wee bit crazy. Okay, fine, crazier.

It all began with a man and a crush. A few times in my presence, he very obviously noticed other attractive women, once almost turning completely around to keep the beauty in his sights. Because the crush had moments of it being mutual, I knew he was at least alright with my appearance, but each time he ogled another woman, I felt particularly ugly. Obviously what he was staring at was somehow superior to gazing at me.

Fast forward to this past spring. Two people – they're best friends – came into my life. Both have this habit of talking about other women with major emphasis on her beauty, her wardrobe, and the impact it has on them. It's like this constant barrage of reminders that appearance is noticed by everyone every second of the day. As a result, I am constantly aware of the fact that others notice me and since I know the majority of people out there have issues with how I look, it becomes a continuous prod at one of my vulnerable places.

An odd side effect of their constant noticing of other women is that when they say nice things about how I look, I discount them out of hand. They say it about everyone, diluting believability to almost nothing.

Then, of course, there's my lack of eyes. I've spent the majority of this year missing at least one eye-like entity from my head. At the moment, I have one prosthetic and one socket with a sort of blank in it. Dark glasses have been Ditched, so it's all there for anyone to see. And evaluate. Probably not all that favorably, because I doubt most think, "She's made a choice to not cover up anything. Good for her."

If you've read My Brain Hurts, you know that at least one person has vocalized their thoughts about my eyes, their disconcerting nature, and the strong opinion that I should hide them until I have prosthetics.

Before all of this happened, I was good with my appearance. Although I knew others had issues, I had a clarity that that was not my opinion and thus secondary to what I felt. With what seems like daily reminders of how much people notice appearance, my positive body image is cracking. It's not so much that I suddenly dislike how I look, but rather it's that my approval has been drowned out by a flood of other voices.

This has not been helped by things like the ophthalmic reconstructive surgeon asking, "Are you having more reconstructive surgery?" implying there was something needing fixing. No small children have run screaming, but my brain argues it's a fluke.

I have gained a new found love of my blindness. Constant visuals of how others look in relation to my own image would be making this far worse. Actually, it's highly likely that my positive body image was possible only because I lacked the vision to see how much my appearance diverged from what's acceptable. Maybe what I proclaim about self-acceptance and body image can't fairly be applied to sighted people. Maybe if I could see myself clearly I'd be horrified.

I like to think I have this great body image and I'm finding it hard to admit right now I feel out of touch with those positive feelings. My approval is buried under this thick layer of muck composed of a continual awareness that everyone is evaluating me and a certain knowledge that most aren't staring out of a desire to gaze upon something attractive.

I abhor the fact that my body image is being so twisted. There's a self consciousness within me that I've never experienced in quite this way. The thing I hate most, though, is the fear that my body image can only be positive because I have built a world that allows me to be oblivious to other's perceptions. If I lived in reality, I couldn't possibly maintain anything close to a positive body image. Therefore, denial becomes an essential component of liking my appearance. Denial isn't healthy making me not healthy. Peachy.

Saturday, October 2, 2010

It Gets Better

Dan Savage, sex columnist extraordinaire, has embarked on a mission to give hope to lesbian, bisexual, gay, and transgendered (LBGT) youth who are facing ridicule and bulling from their peers. Called the It Gets Better Project, the point is to talk about how good life can be once you leave the harsh high school environment. For more information, go here.

As I watched the accompanying video, I began considering how much the equivalent was needed for disabled teens who face similar potentially rough high school years. I can totally tell a bunch of kids that it does get better, right? Actually, not exactly.

Granted, my high school years were a kind of miserable that I haven't experienced since and I prefer now to then without question, but the issues I had back then with people's attitudes and behavior hasn't magically morphed into some idyllic world. I struggled with social isolation, people not understanding, and being underestimated as a teen. From my blog, you can tell that it hasn't particularly changed.

When an LBGT teen leaves high school and either enters the work force or goes off to college, they are suddenly endowed with freedom allowing them to pick their friends, environment, and activities. eventual financial independence strips away the last of the constraints on lifestyle choices. In modern times and with modern conveniences, Jane doesn't need Dick to survive and thrive.

As anyone with a physical disability can tell you, we need other people on a regular basis. It is as much a fact of life as the need for oxygen. This reliance on others places constraints on our lives – on our choices.

From buying groceries to reading annoying print mail, I rely upon people to do things small and large. If Jane wants to have dinner with Joan, she gets herself to the desired place, meets her friend, picks her meal from the menu options, pays her portion of the bill by glancing at the check and adding things up, then gets herself home. When I want to have dinner with a friend, I must figure out how I'm getting there, pick a place that can feed me, rely upon my companion to read the menu, ask someone to tell me how much my food cost, and arrange for a way home. It's a completely different reality full of limitations on my choices.

Savage's It Gets Better Project essentially tells LBGT youth that life will improve because they will have the ability to shape their lives. If I were to start an It Gets Better Project for disabled youth, I would have a different sort of message. In fact, my project would more accurately be called the You Get Better Project because while I face the same issues now, I feel radically different about myself and that makes all the difference in the world.

Wednesday, September 29, 2010

Is It Funny?

The other evening I went out with a bunch of people, some long-time friends and some newly met. When someone complimented my black skirt, I said, "Thanks. I made it."

My friend G was sitting next to me at the time and he piped up. "Jen, that's a great red skirt."

I paused looking at him, then started laughing as I gave him a playful smack.

The woman sitting with us was a recent acquaintance and the look on her face must have been truly horrified because through his laughter, G said, "I'm the only person who ever gives Jen any shit." Not exactly true, but close.

Did you laugh? If not, here's a question to ask yourself: Do you think of disability as a negative? For instance, is it my obstacle to overcome, a tragic situation, or something you wish I was spared?

I have a theory that people who view disability as a negative often miss the humor in situations such as the above. the tragic is simply not humorous, akin to poking fun at someone dying. (Btw, is the euphemism for a dying person existence challenged?)

There is a fundamental belief in our culture that something pitiable should be off limits. You don't laugh at another's hardships. When G deadpanned about my skirt being red, he assumed I knew he thought me capable of dressing myself in the desired clothing of the desired color. What happened would not be amusing if G honestly thought I'd believe him for more than about two seconds while I realized he was kidding.

Previously I have touched upon the idea that when it comes to language, the audience matters. Those who know your politics and opinions have a context in which to understand your words. On the other hand, strangers have no more information than the words you utter by which to judge your character. Therefore, using reclaimed words like crip or queer works only when the listener knows certain specifics about you.

This same principle can be applied to humor. A black person making fun of black people can be a source of hilarity whereas a white stranger doing the same thing appears to be racist. It's all about what the audience knows about the speaker. It's all about context.

Saturday Night Live has taken a great deal of heat for its portrayal of New York's Governor Paterson, who is the first legally blind person to ever hold that office. Apparently, they had him stumbling around a room, using charts upside down, and not responding properly before a camera. Basically, SNL banked on the fact that blind people are seen as incapable of doing certain things and played that up for a laugh, along the way giving millions of people the idea that blind folks aren't able to function in a room, develop systems to make certain materials are right side up, or face a camera when given an auditory cue. (On September 26, Paterson was given a chance to dish some of it back to SNL when he appeared on the show.)

In reading about the controversy, I stumbled across a paraphrasing of David Letterman's philosophy: poke fun only at things over which an individual has volition. Those beyond one's control are not appropriate.

G is correct that very few people tease me about things related to blindness. At first glance, it seems like blindness is entirely beyond my volition and therefore, under the Letterman Doctrine, sacrosanct. I would argue that there is a distinction between using misconceptions about a disability to evoke humor and highlighting the mirth in, for example, me using the phrase "at first glance." The former encourages misinformation to spread whereas the latter is about irony and facts.

As this entry might show, I am not completely clear on where the lines should be drawn when it comes to humor based on marginalized group status. I do know that audience matters and I find humor that perpetuates stereotypes to be inappropriate.

Should people make fun of blindness? Definitely. Should they do so without thought of audience and enabling misconceptions? Nope, unless their goal is to be such an ass that even a blind person can se it.

Wednesday, September 22, 2010

An Act of Will

Often when people behave in ways I find objectionable the route explanation is ignorance. They simply lack the knowledge to handle the situation in a "better" way. Expressions of my frustration at the state of affairs elicit the counsel to "have compassion" and sometimes that's even possible. Then there are the times that the ignorance takes on an intentional flavor making me angry.

There's an expression – burying your head in the sand –meaning a person has chosen to not take in knowledge that is offered to them. To me, this constitutes willful ignorance that I find unconscionable because the individual had the option to learn "better" and refused. In fact, I find it worse than someone whose behavior is based on a genuine belief that I am less capable, childlike, pitiable, or whatever. At least in that case the individual has paid attention long enough to listen to another perspective. I may not like their ultimate decision, but respect it as long as it doesn't deny me what I need.

What constitutes willful ignorance? Receiving a request from a dyslexic person for alternative formats with an explanation as to why and two months later acting surprised, baffled, and unprepared when the same inquiry is made. Witnessing how a sighted person assists a blind man and later not knowing what to do. Attending a panel discussion where a wheelchair user explains how insulting the phrase "wheelchair bound" is and continuing to use that phrase over and over. Being given a concrete set of steps for creating alternative formats that is simple and easily done and never doing it. In other words, literally tripping over the facts and pretending the path was clear.

As disabled people become a more visible part of society and their experience better articulated, I see this type of thing with greater frequency and find it utterly incomprehensible. How can a person be told what to do and refuse to do it? Why would they ignore information? What is the mindset that makes this behavior alright? I don't get it. AT all.

Unfortunately, in my own life I am dealing with a case of collective willful ignorance. While I might not understand it or know how to facilitate change, I do know my own limits. I will not lend my talents and energy to benefit a group that buries its collective head in the sand.

I just wish I could wrap my mind around the why of it. While it feels incredibly personal, I suspect it is not. Until I can comprehend the behavior, I know my unanswered questions will rattle around in the back of my mind. Insight welcome.

Wednesday, September 15, 2010

My Brain Hurts

With age is suppose to come wisdom, but as I grow older the human race becomes more baffling. In fact, the deeper my understanding of human motivation the less certainty I possess. And while I suspect this is not unique to the disability experience, I do think my membership in that group adds a layer of complexity to an already jumbled muddle.

Meeting a new person and having a great conversation cannot be taken at face value. We all have to ask ourselves if the friendliness was genuine. Should the answer be yes, most folks move on to determining their next step. I, on the other hand, must then field a second question: Was the friendliness based on a perceived obligation to be nice to a disabled person or on feeling sorry for me? Unfortunately, authentic warmth and that based upon obligation or pity look remarkably similar because the sentiment is genuine and the variation is only that of motive.

I don't think people realize that affability based on duty or sympathy is actually harmful because it sets up an expectation that will not be met. Everyone has mistaken another's actions as an overture of friendship and felt the resulting sting. Now imagine being told that person thought they were doing a "good" thing. It tends to make my brain hurt.

Another case of "The older I get the harder it becomes" revolves around people's "bad" behavior. Take my favorite situation of sitting alone at a party. I find it harder and harder to feel simple anger at such a state of affairs. Instead, my head starts to analyze the situation. What did I do wrong? What dynamics contributed to what occurred? Besides, being angry at behavior based on ignorance or not knowing what to do seems unmerited. More brain pain.

Then you have the truly obnoxious behavior. Perfect real life case in point. Recently, someone I have been acquainted with for years told me how great it was that with both eyes removed I had a chance to look normal. This came on the heels of a prior conversation in which he told me how off-putting my appearance is and how I should hide my eyes behind glasses to make others comfortable. Believe it or not, he's still walking this earth with all his "equipment" in tact.

Did I get angry? Definitely. However, about five seconds later my brain started explaining to me why what he said reflected his generational background, that maybe he mistook my dark glasses as concealing behavior, and I probably misunderstood anyway.

This all happens because I am constantly seeking understanding of why TABs react to disabled people in particular ways. My knowledge base grows almost daily and I can call upon it to interpret actions directed at me. It's like having the traditional angel and devil perched on either shoulder. My angel is a compilation of everyone who tells me to "See it from the other person's perspective" while my devil is the amalgamation of every disabled activist I've ever admired.

Often a blog entry emerges from whatever issue I am currently trying to understand. Prior to sitting down at the computer, I talk – some probably think endlessly – about whatever I am wrestling. This week I have discovered that I feel responsible for how people feel about their less than stellar behavior. Example: I'm with another person and the cashier interacts with my companion while processing what is clearly my stuff. If I were to say, "Umm, that's my stuff so maybe you should talk to me" and the cashier became upset about their own actions, I would feel like I caused their upset.

Fortunately a new perspective has emerged. When a person does something, they are responsible for how they feel about it. My role is to request a change in behavior and be responsible for how I feel about it. In other words, I didn't do anything so how can I be to blame?

Wednesday, September 8, 2010

Fox V. Reeve

In 1995, I lived in an apartment with three other disabled people. Watching Christopher Reeve's spinal cord injury (SCI) unfold on national television, believe it or not, we cheered. Finally, someone with an activist bent and massive public attention had joined our ranks. This was the beginning of disability rights becoming such a visible battle that nobody could ignore it.

Time passed and we became disillusioned. Reeve seemed completely focused on walking again. That was the media story at any rate. Cheers turned to curses.

I finally forced myself to read "Still Me," which is Reeve's autobiographical account of his life with emphasis on the SCI. I was extremely worried I might start throwing things, but that didn't happen. Unfortunately, neither did I discover a markedly different story from the one fed to us by the media. The man had accessibility consultants. Who has those?

In many ways, celebrity and money insulated Reeve from the lack of physical access most wheelchair users encounter daily. Even hourly. Perhaps that explains why instead of becoming an advocate for ramps, elevators, and open minds, he went after a "cure" with single-minded focus. I know his foundation is committed to helping people get what they need, but from what I read it was mostly in relation to quality care and access to equipment to keep bodies in good physical condition allowing for the "cure" to be administered when it was found.

A few years later, Michael J. Fox announced he had Parkinson's and I didn't allow my heart to even hope. If Reeve, with his background, didn't fulfill my dreams, Fox seemed like something beyond a long shot. Wrong again. From the moment I heard Fox speak about his condition, I was elated. He articulated Parkinson's positive impact on his life. He spoke about his condition like it wasn't the end of the world. He expressed a desire to find a cure, but in the meantime LIVES his life to the fullest. Happily.

An argument can be made that the nature of Fox's and Reeve's disabilities explains their different reactions to their new circumstances. A difference also exists in terms of sudden onset versus gradual decline. Finally, Fox had years to accept his condition before he presented it to the public whereas Reeve was instantaneously in the spotlight.

All of these things are true yet to me they do not adequately explain the difference in approach. If the nature of a disability had a strong correlation with how a person learned to cope, then we would see this relationship in the research and that is not the case. In my personal experience, rapid change from one stable state to another mostly stable state is far easier to adjust to than a situation in constant flux, which is the opposite when you compare Reeve and Fox.

Finally, the element of time. I've read the books both men penned and at the approximate same time post accident/diagnosis, they were remarkably distinct in how they related to their disability.

The true explanation may lie in their personalities. Through his words, Reeve painted a picture of a serious man focused on succeeding. Fox, on the other hand, is a self-proclaimed incurable optimist. It is easy to imagine approach to life impacting approach to life-changing circumstances.

Whatever the reason, these two celebrities publicly reacted to their conditions disparately and I have started speaking about how people cope with disability by describing The Reeve Approach then The Fox Method. To me, it illustrates a fundamental difference in how they each conceive of their condition. Is the disability a burden to be thrown off as soon as possible or is it something to be appreciated for what it teaches, dealt with to optimize happiness, and potentially some day laid aside for the next life-changing experience? Who knew that in a Alex P. Keaton versus Superman contest I'd be opting for the conservative.

My way of dealing with disability mostly follows The Fox Method, except I feel no need to put aside either blindness or my appearance issues. I would gladly give away the chronic illness. Gratis.

Sunday, September 5, 2010

Equal versus Equitable

Put two proud, angry and strong disabled people together and interesting ideas will abound. This year I acquired such a person and she keeps saying things that make me think. Fairly fortuitous since I was in need of new blog material.

Here I write constantly about how TABs behave and why for one reason or another it bothers me. It would be easy to have the impression that I want special treatment and more consideration than the average person gives to the average stranger. And, in a way, I do.

When there are 3 kids and 2 chocolate chip cookies, someone must divide them into 3 servings of equal amounts. It is crucial that each child feel the portioning was fair. In life, we often apply this principle to our behavior – treat people the same way and it will be fair. In actuality, that is not remotely the case.

Loading a family's books into a shelving unit, you would naturally put the child's books near the bottom and likely the books interesting the tallest member of the family at the top. Equal would be even distribution of all the books over all the shelves, but would it be fair? Not particularly since shorter individuals would need to climb stepstools. allocation by height and interest is equitable because nobody would need to go to extra effort to achieve the same goal.

When I am isolated in a crowd and feeling invisible, nobody is violating the laws of equalness. They are making eye contact with another person and carrying on a conversation. Equivalent eye contact with me will get them exactly nowhere, so I remain solitary. Having to make additional effort to get my attention creates imbalance, but isn't that equitable?

Wednesday, September 1, 2010

Becoming Invisible

Sometimes I feel invisible as if I could walk through a room of people naked and nobody would notice. On my part, it's neither intentional nor is its timing under my control. I have also not dawned Harry Potter's cloak of invisibility. Suddenly, without even a puff of smoke, I'm gone.

Because I cannot see people's eyes, I cannot say whether they skim past me, look through me, or simply never turn in my direction. Reading the minds of those around me to truly know what thoughts they entertain is also beyond my abilities. I can say with some authority that people behave as though I am not there. And while I might be small, I'm not microscopic.

The other night I went to a concert with two women I know well. A good friend of one of them met up with us. When we met, he shook my hand and was told my name which my friends used throughout the evening. He giggled with the other total stranger in my female trio. As he had with the other women, he hugged me goodbye. At one point, he made a comment -- "They're talking about people we don't even know." -- that might have been directed at me. I attempted to engage him in small talk twice. While he politely answered my questions, there was absolutely no effort made to further the conversation.

It took me a while to realize it, but for him I didn't really exist except perhaps in relation to the other women. Had he not shaken my hand or hugged me goodbye, he would have been judged rude by my companions. Ditto with my direct remarks to him. His one comment possibly directed at me served the purpose of reinserting himself into the conversation. Otherwise, I was not present.

Here's the thing that seems so contradictory: he is a genuinely nice person. My friend has known him for over ten years and she doesn't spend time and energy on mean people. Even I could tell he was a good person simply by the way he handled himself and the way he spoke. Yet somehow I vanished. Into thin air. For most of the night.

Melissa Etheridge has a line in "Nowhere to Go" that summarizes my theory on all this. "And they don't understand what they don't see/And they look through you and they look past me." In other words, this otherwise nice man couldn't wrap his mind around my existence, so he disappeared me and because I was disappeared, he would never understand me.

Maybe I was showing too many scars. I had on a spaghetti-strap dress, so you could see several, one pretty huge. Maybe I finally met the one person put off by me wearing dark glasses. (A habit I will gladly stop as soon as I know my lack of a right eye won't gross anyone out.) Maybe he didn't think we had anything in common. Maybe he'd never met a blind person. Maybe I had bad breath or smelled.

Honestly, I don't even need to know the why of it. My interest lies in how this particular tendency contributes to those things that make me most frustrated, namely social isolation, trouble making friends, and lack of dates. With my actions, I can force people to notice me. Plaguing this man all night with questions would have done the job, but that is so not my style. I refuse to become obnoxious in order to compensate for another's lacks.

Yet I still involuntarily disappear into thin air. If I could only do it at will, I'd have a far more interesting life with a large bank account.

Thursday, August 19, 2010


Dear Readers,

Anybody notice the last of an entry yesterday? If so, you get a gold star for being observant.

Life has warn me out and I'm taking off some time from blogging. I hope to recharge while visiting my family and floating in a lake. Something resembling regular posting will resume in September.

Thanks for your understanding.

Wednesday, August 11, 2010

Our Responsibility?

From my last post, you probably figured out I don't think it's fair to make disability the sole responsibility of the disabled. The why of it might elude you. Disabled people are the ones with the "problems," so shouldn't we be the ones to solve them? They are *are* issues and if we want them addressed making it another person's responsibility seems contrary to, well, everything upon which our culture is built.

I do agree the physical difference is contained within me, but it only becomes disability when I try to function within the society humans have constructed. Eyes were chosen as the method for decoding writing instead of something tactile, which makes me disabled. Our language is auditory, making Deaf people disabled when they try to operate in the broader world. Why is our written language visual? Writing developed when light was harder to acquire than flipping a switch would have made a tactile system useful. Why is our language exclusively auditory? A language of gesture was often used in primitive cultures for hunting.

There is no concrete, simple answer as to why society has developed in the manner it has, but it is nonetheless the society we inhabit. Unfortunately, many of its elements turn difference into disability. How does that make disability the responsibility of the disabled? How can society with one hand make me disabled and with the other hold me responsible for fixing it?

I have been pondering whether other marginalized groups are in the same position. Is racial inequity the responsibility of ethnic minorities? Clearly racism is an artifact of our social fabric that has labeled a given physical difference a marker of inferiority. WE do not expect an ethnic minority to educate an employer or check to make sure they are allowed in a public place. We do hold some expectations that they will fight the system, endure greater expense (groceries in the "ghetto"), and answer questions, but as a society we acknowledge the unfairness of such circumstances. Our insistence is that social expectations and societal structures shift to become fair.

Except, of course, when it comes to disability. I hold two elements of our social fabric responsible for this. The pioneer pull yourself up by your bootstraps mentality has so shaped our thinking that we almost automatically look for how an individual is to blame for their plight. Didn't get an A on a math test? It's not because the previous evening your father was beating your mother and you couldn't sleep. No, you didn't study hard enough. Can't walk up that flight of stairs? Well obviously it is your fault because you are the paraplegic so you figure it out. Viewed in this simplistic way, it seems patently absurd to make the person who can't walk up the stairs in charge of the problem. Unable to morph stairs into a ramp, they can only turn away from their goal.

I also believe our social norms about appearance and behavior play a role. WE think people should look a certain way. We think they should act in a particular manner. And when they don't? Wow. Everything about life becomes a little bit harder and that is considered perfectly acceptable. So when a disabled person comes along who may be different in manner or appearance and need unusual things, it falls into a similar category. It's their difference and their problem to solve or not solve.

Legislation attempts to address societal inequities related to disability and has somewhat reallocated responsibility. Unfortunately, although the ADA is twenty years old, it has not changed the minds and hearts of individuals let alone our society's nature. Even the language of the law mandating "reasonable accommodations" unless there is an "undue burden" makes disability equity something to work towards not a concrete benchmark that must be met.

Perhaps the societal shift of responsibility will take more time for the Civil Rights Act of 1965 is twenty-five years older than the ADA. Possibly in 2035 I will not live in a society that finds it acceptable to make me responsible for a physical difference I did not choose. As a sprightly sixty-three-year-old, I am certain it will radically alter my experience.

Wednesday, August 4, 2010

Disability is the responsibility of the Disabled

I have been enraptured by the phrase "disability is the responsibility of the disabled" ever since I discovered it in Unblinkable Difference . In so many ways, it elucidates a nebulous concept I have struggled to articulate. In so many ways, it encapsulates the frustration that fills me routinely.

A Deaf woman goes for a job interview. At some point, she will be asked, "What accommodations will you need to perform this job?" and it will be expected that she provide a detailed list with whatever explanation is necessary to help what is likely an ignorant person understand deafness and all its implications. Should she be hired, she will need to explain repeatedly these exact same things. She will probably have to identify a vendor from whom a TTY can be purchased and then install it herself. Because she is Deaf, she must enlighten the ignorant just to have a job.

A man who uses a wheelchair wants to attend a meetup for people who speak French. An unfamiliar cafe necessitates a phone call to see if there are ramps and a suitable bathroom. He will do a dry run to make sure the person who answered his questions actually knew what "accessible" meant. If there are architectural barriers, he is faced with the choice of asking for the gathering to change venues or not attending. Because he is a paraplegic, this man is responsible for making certain he can attend a public event.

A blind woman wants to get a new cell phone. First she needs to identify a model that is usable tactilely. Next she needs to determine the compatible screenreader and decide if it's functionality suits her needs. Finally, she must not only pay for her phone, which is probably a more expensive model because of her needs, but then pay for the screenreader which is typically an additional $300. Finally, she must seek out an accessible format for the phone's manual and cope with customer service professionals unfamiliar with how a blind person operates a cell phone. Because she is blind, she is responsible to do all necessary research, cope with a phone not designed with her needs in mind, and pay significantly more money than the average person for the privilege. (Apple's I-Phone is the exception to this rule.)

After months of hurting all over and feeling lousy, a man is finally diagnosed with Fibro Myalgia. With no known cure, he and his doctor work to treat the symptoms, but he is still unable to work. Having paid into the Social Security system for fifteen years, he feels no qualms about applying for disability benefits. It takes months for his case to be reviewed and then he is told he does not have a disability and is therefore not eligible for benefits. He must then use his limited energy to find an attorney, get additional medical documentation, write letters, make phone calls, attend hearings, submit to medical exams by government-employed doctors, and juggle surviving with no income. Hopefully he can find the strength and stamina for this test of endurance. At some point, he will maybe receive the benefits he is due, but there will be no compensation for the time and energy he has invested. Because he has Fibro Myalgia, he must fight the system to get what he is entitled.

A Little Person is waiting at a bus stop and is approached by a fellow traveler. Striking up a conversation, the stranger begins to ask questions about being a "midget." Areas of inquiry range from the mundane of driving a car to the intimacies of dating. From experience, the Little Person knows being rude to this stranger will cause the person to hold all Little People responsible. While these questions might be answered in the pages of a book or by surfing the web, the stranger has decided to interrogate this individual. Because she is a Little Person, she must educate the ignorant.

I and the woman who pens Unblinkable Difference contend that our society was constructed around the idea that the person who possesses certain physical conditions is responsible for all things related to it. As a whole, society takes no responsibility for educating oneself, identifying the accessibility of a meeting location, incorporating universal design into products, or providing effective support to battle the system. It is not enough that we must manage our conditions and do whatever is necessary to function with it. Because we are disabled, we are required to educating employers, making phone calls, doing research, paying extra for what we need, fighting the system, and coping with ignorant people.

Is this fair? Is this what other marginalized groups contend with? Is this the way things should be? Next week I'll tackle that part of the issue.

Tuesday, July 27, 2010

Credit Where Credit's Due

A friend has a tag on her blog that says "People Who Get It Right." Like her, I believe it's not only important to point out problems, but also highlight exceptional occurrences in TAB behavior. Recently one happened worthy of its own entry.

In Blindness v. Medical Profession, , I described the radically different experiences I had with the removal of my left eye versus the unblocking of my trachea, with the former suffering from the juxtaposition. Staff behavior was one issue I mentioned because people kept coming and going from my cubical without telling me or beginning procedures without alerting me. Though my friend tried to address the situation, he was ignored.

When I scheduled my right eye removal, I decided to directly address the situation mentioning my experience to the pre-op nurse. She put me in touch with the Nurse Manager.

I freely admit I was not expecting much based on previous similar events. I freely admit I was very wrong. The Nurse Manager called me and I explained my concern. I said something like, "I know people aren't used to interacting with blind folks."

She said, "We treat eye conditions, so we should be."

"Yeah, I replied, "but probably newly blind people not long-term blind people."

"We need to do better," she stated, quite firmly.

I told the Nurse Manager that I was impressed at her response and she said, "It's my job. This should not be happening to you"

The day of the surgery, I showed up curious about how things might go. It was like the same staff members had been taken over by a body snatcher with perfect blind person manners. Everyone said who they were, made their comings and goings crystal clear, and let me know what was happening before it happened. I kept looking at my friend with amazement and we both kept saying, "Wow, it's completely different."

I called to thank the Nurse Manager. Usually, speaking up about TAB bad behavior gets a list of justifications and excuses. I was thrilled that my concerns were not only heard but addressed in such an complete way. Kudos to the Nurse Manager.

Wednesday, July 14, 2010

The Power of She

Ever been talked about as if you weren't standing right there? Disabled people are more than familiar with this experience. Our companions are directed where to take us, given things intended for us, and asked what we want as if they have a direct line to our brains. It's annoying. In the extreme.

The word "she" has the power to totally alter reality. "She needs to go over there." "What does she want?" I become a body that is unable to interact with the world. I become unnecessary in the conversation. Three letters – one syllable – and I vanish.

Lately, this has happened so much that I have wanted to wear a sign that says, "She Can TALK!" Instead, I keep saying, "Where do I need to go?" or "I want..." You would think this might clue the person "she"ing me into nonexistence that I possess the ability to communicate, but no such luck.

When the "she"ing happens, some of my friends play dumb, others pointedly look at me, and every so often one will say, "I don't know what she wants. Maybe you should ask her?" Often this has more corrective power reinforcing the fact that my presence is irrelevant.

I am most likely to be "she"ed in medical settings where disability is constructed around the physical limitations of the body and corrective intervention. This focus on what cannot be done probably causes medical professionals to have a keen awareness of my deficits as opposed to either my strengths or ways to work around my limitations.

Right now, as I deal with the medical establishment seemingly constantly, I lack the patience to understand the factors that contribute to this "she"ing behavior. I care not a wit as to what socially-perpetuated beliefs about disability have shaped individual behavior. I have no compassion for ignorance. I just want to be treated like a person not disappeared by simple word choice. Because, well, it isn't simple word choice. It's an indication of a pervasive, flawed perception of me.

I am having yet more surgery. It seems my right eye socket is jealous of the left and has decided to evict it's occupying eye. The blog will be dark until the first week of August. All positive thoughts are welcome and appreciated.

Wednesday, July 7, 2010

Invalid or Invalid

Before you read any further, make sure to look at the title of this entry. The word could be invalid as in bedridden or it could be invalid as in unfounded, worthless, or null. I shudder whenever I hear the term used in the former denotation of a person who is weak or ill because it so easily could mean the other as well. Is the term on some level a denial of personhood? While I suspect the answer is yes, I have no logical argument to prove it.

Now how about another favorite of mine: wheelchair bound. Users of wheelchairs are typically unable to get themselves from point a to point b solely under their own power, so they plop themselves into this device and suddenly can move about with freedom. Does that experience fit with the word bound? Replace it with the grammatically appropriate version of the word use, as in wheelchair user or person who uses a wheelchair and suddenly something more reflective of reality.

There is a place between saying anything and scrutinizing each word endlessly. I wish people would strive for that place. To most achieving it feels daunting, so they give up and stop referring to things forthrightly. In my opinion, it is far more doable than you think.

Start with the premise that the person you are referring to is simply different from you. This means you acknowledge human variation and the atypical way the person interacts with the world but you do not judge or rank it. Next determine the concept you wish to articulate and attempt to find an equivalent in your life. For example, you move from point a to point b by use of your feet, a car, bike or bus. How would you describe that? Hoofing it, riding in a car, riding a bike, or bus rider would work. None of those terms imply you are glued to your method of locomotion so why would you describe a wheelchair user in those terms?

The term bound is one that probably can be traced back to somebody thinking about how they, a TAB, would feel if they needed to use a wheelchair and could only come up with the feeling of trapped. Don't try to put yourself in the shoes of a disabled person when it comes to judging their life or how they feel about it. Simply put, it cannot be done in a neutral way free of societal beliefs about ability and physical difference. As a TAB you are also unaware of the techniques we are taught to accomplish tasks, emotional changes our disability has facilitated, and what windows might have opened when doors closed. In other words, you lack basic information necessary to occupy our footwear.

It is far better to seek an equivalent concept in your able-bodied life and find a way to describe it that would work for you. Here's a great example. From time to time, friends of mine find themselves in the position of wanting to know if a person they've met is acquainted with me. Usually, if this happened with a non-disabled person, a description of the individual would be given. To me that makes it completely reasonable and efficient to say, "Do you know Jen? She's blind, has curly hair, and her face is pretty unusual." It's the equivalent of saying, "He's tall, really skinny, and has long hair."

Back to invalid. Usually that word refers to a person who cannot get out of bed or leave the house. If you treat that as a fact that has no inherent implications about the person's quality of life, then I imagine you can come up with a better term than one which means null with a change in emphasis. It is probably going to take a few more words, but I think it might be worth the effort.

Wednesday, June 30, 2010

Happy Blogiversary

As of today, I have been writing this blog for a year, hence the title. At the outset, I was not focused on how the experience might effect me, rather on how it might impact others. Looking back, because even a blind person has 20/20 vision in hindsight, I am mostly aware of lessons learned and changes within myself.

Chronic illness has stripped away awareness of my own abilities and limitations. Can I reliably commit to something that happens every week? Posting entries regularly through the past year of ups and downs has shown me I can stick to a schedule and meet commitments. In the process, I have let go of my tendency to stress excessively and be hyper vigilant. AS the quality has sometimes reflected, I even have (gasp) composed things at the last minute. With such knowledge of my boundaries and abilities, I know I can take on a bigger commitment without falling flat on my face.

I've also discovered I like positive feedback. Whenever one of you posts a comment or I gain another follower, there is some cheering in my house. Praise for something more significant than crossing a street feels great.

Back in 1999, I stopped directly contributing anything to the disabled community. As my energy has increased, I felt guilt for not doing more. I would consider some possible task to undertake only to stop because it felt too huge and I felt ill-equipped. This blog filled a specific drive I possess to change how the world views disability. While it does not reach the masses I would like, it does contributesomething and reaches somebody. To be horribly clich̩, I'm following my dream Рmy heart. Finally.

And then there are the shifts in my perceptions and thinking this experience has evoked. There are a ton of articulate, thoughtful, and spirited disabled people out there saying more or less what I say. At the same time, I have come to know that TABs are not receiving the message. The gulf is somehow wider and deeper than I imagined. More plainly than ever before, I see that only a specific bridge can connect the two sides. Most importantly, I have a clear mental image of how to create that bridge. What I don't know is how to get TABs to pay attention long enough for me to begin. It's like I know steps 3 to 10, but I can't elucidate steps 1 and 2 in my mind.

I think the most surprising result of writing this blog is my take on the word "broken." I just reread my first entry What's Wrong with the Word Broken? and find all it says to still be true. However, I have a more complete understanding. Some people seem to need the concept of broken as applied to themselves so they can conceptualize a kind of rebuilding or rebirth. "I was broken, but now I am whole." It strikes me that integral to this is distinguishing between the present good state and the past "broken" one. It's about acknowledging effort and embracing progress. It's about what it means to say, "I am no longer broken."

I have also discovered something more fundamental than the logic and reason I used to establish my perspective a year ago. Humans are resilient. I would rather focus on how our spirit can weather any storm than how it might shatter upon sharp rocks. Maybe I just like the imagery of something that withstands any force leveled against it. Maybe I am not psychologically capable of even considering humans can break because I fear acknowledging that fact will give my spirit permission to fall into pieces. Especially right now, falling to pieces is not permitted.

I want to leave you with a few questions to ponder on your own. How did you think of disability before beginning to read this blog? Has that changed? Even if you're a friend of mine and have already been educated by me, have there been subtle shifts in understanding? Do you interact with disabled people you encounter differently than before? Do you tend to notice Braille, ramps, and other aspects of accessibility more? Do you discern ways disabled people are excluded more?

Wednesday, June 23, 2010

Right to Decide

There are two hot button political issues – abortion and assisted dying – that are, if you can believe it, even more polarizing and divisive within the disabled community than in non-disabled society. Depending on your viewpoint, it can feel like you are a member of the KKK at an NAACP convention. Today I want to talk about assisted dying. (

One camp couches their discourse in terms of palliative sedation and the right to die. They argue each individual should have ultimate autonomy over when their life ends. Their case draws upon the pain and suffering inherent in a slow death from a fatal condition that is unnecessary in light of modern medicine's ability to provide "gentler" means.

At the moment, supporters of the right to die are focused on those given a terminal diagnosis with less than six months of life remaining. They speak of safeguards to prevent abuses, doctors seeking psychiatric input whenever they suspect a psychological condition might be influencing a patient's decision, and educating the terminally ill about their options so they can make an informed choice.

And then there are those who refer to the issue as assisted suicide or murder. They are fully aware that "terminal diagnosis" is a nebulus term, that legislation cannot adequately safeguard against all abuses, and that what begins with someone who will die from cancer in two months will shift over time. With this reality in mind, many disabled people fear that the myths and misconceptions society has about disability will hold undue sway over life and death decisions either directly or in a more oblique way.

Many consider becoming disabled to be a fate worse than death. Their understanding of disability is based on exposure to societal beliefs as opposed to direct experience with the condition in question. Often all they can see is what disability limits, denies, and decrees for the future. Armed with this flawed picture, they decide about life and death. Those happily living with disabling conditions argue that any choice based on such inaccurate information should not be supported or encouraged by public policy. Essentially, it encourages people to opt for death when happiness is possible.

Healthcare professionals with their narrow, medical view of disability impact the situation when they provide information to their patients. As any disabled person can tell you, the medical world possesses a particularly harsh and limited view of our lives. They see us not as we live but as we are sick. Though it may be only a fraction of our lives, if that's all they see then that's all they know. This warped version of disability reality is passed on to those trying to assess future quality of life.

The politics of disability economics are rather grim. Funding to support independent living in the community, to help retrain people for jobs, to provide accessible transportation and housing, to enforce laws requiring equal access and accommodations, and to integrate disabled people into the community are limited and shrinking as the number of disabled people grows. The things that could improve the quality of a disabled life are not adequately provided. Furthermore, health insurance companies make decisions about what procedures to fund. From a business perspective, the death of an insured disabled person is cheaper than paying the medical bills over even a few months.

In other words, people being given "terminal" diagnosis rely upon inaccurate views of disability, advice given by health care professionals who only see the negatives of the condition, and a potential future shaped by governmental monetary restrictions and business models dictating their death is fiscally advantageous. With great justification, disabled people fear death will be chosen because any positive alternative is not known. The discourse is far more nuanced than I have expressed here, so for an in-depth look at this side of the debate, check out Bad Cripple's blog.

I tend to stay out of this debate not because I do not have a strong opinion but because it's not one embraced by either camp I've described above. However, while presenting my experiences as a disabled bisexual, I happened to touch upon the fact that many consider disability a fate worse than death. Stephen Drake of Not Dead Yet came across the resulting comments and wrote a blog entry. A local reporter then contacted me and penned her own article that did not adequately express my viewpoint. I have wanted to state my own viewpoint ever since.

I completely agree that end of life decisions have been are, and will be unduly influenced by societal beliefs about disability. For me, this debate is as personal as a loved one deciding to die based on misconceptions and misinformation. Disabled activists are justified in their fears and not catastrophizing or exaggerating.

I will always and forever support the right of each person to decide about their own life and death. Everyone should have the ability to choose their own future and how it unfolds. I have no right to force my perspective upon them. I believe with every fiber of my being that we all have the right to die in our own space and time. While I may not like the result, I will not ever dictate how another lives, loves, creates, feels, or dies.

The only way to impact such end of life decisions is to change how society perceives disability. It will have the added boon of effecting other arenas such as how one disabled individual is treated when they enter a public space, go to college, or try to date.

Wednesday, June 16, 2010

The Myths that Divide Us

Like with any marginalized group, the beliefs held by the majority culture about the minority group form the gulf between "us" and "them." For example, intellectual inferiority of blacks was one of the divisive myths held by whites during the time of slavery that made the practice seem reasonable and even benevolant.

Myths surround disability in general and specific conditions in particular. I thought a sampling of those that drive me nuts might be interesting.

Blind people have better hearing.
I will grant you blind folks can sometimes perceive things using auditory input that sighted people cannot. This is more a function of training for we have taught our brains through experience how to interpret what we hear.

What a sighted person will not attempt with their eyes closed is something I cannot do.
Closing one's eyes is not an adequate means to experience the world as I do. I have specialized training and years of experience to draw upon when I tackle an activity. With eyes shut, you may not know how to pour a drink, cross a road, or thread a needle, but that does not mean it is not possible just that you are ignorant of the methodology.

Blind people do not enjoy media such as films, plays, and television.
Visual media presents a challenge, but it doesn't strip away enjoyment. I can figure out a lot with my ears and helpful people willing to describe visual components aid the process. When a professionally-done audio track is provided, I am in heaven. (Try your secondary audio channel or SAP with any episode of Law and Order on TNT for an excellent example.)

An inability to make eye contact indicates an inability to communicate.
While it is not possible to get my attention with visual means, my ears work well and a comment directed to me usually registers. If all else fails, use specific language that identifies me as the person you are addressing. "Excuse me blind woman..." (Blind is not a dirty word!)

Disabled people are not sexual beings.
If you have any doubts about this, I am certain a disabled person out there is willing to provide concrete, incontrovertible proof or ask one of my former significant others. Disability does not turn off the libido. Trust me.

Disabled people's lives are less satisfying/fulfilling/rewarding.
I understand the origin of this misconception for it is hard to put yourself in the shoes of a disabled person and understand what in their life generates pleasure. Again, this is one of the cases where it isn't possible for a non-disabled person to put themselves in a disabled person's place and gain understanding of our lives. Yes, we cannot do some of the things that might have previously brought us joy, but other loves have taken their place. I will even admit that sometimes it's hard to be disabled. That is often the case more because of the society that we inhabit not our physical conditions.

Disabled people will have disabled kids.
Many disabilities are acquired through accident or illness in no way connected to genetics. Large numbers of us have no greater chance of disabled biological children than any other person on the planet.

Someone is there 24/7 to take care of the disabled person.
I truly dislike it when I request a document in an alternative format only to be asked, "Oh, can't somebody read it for you?" I live with a dog who hasn't learned to read. Yet. I do not have someone at my beck and call for any task I care to dump upon them. My friends are incredibly helpful, but I do not abuse their giving natures nor should they be expected to take care of me. If in your life you are not providing such support for a disabled person, do not expect that someone else is doing it either.

Social welfare services are sufficient in quantity, quality, and scope to meet our needs.
No. Not even close. There is something like a 70% unemployment rate among the disabled and the majority of us live far below the poverty line.

Any entity serving any population of disabled people is incapable of being discriminatory.
Those serving the needs of racial minorities discriminate based on sexual orientation. Within the LBGT community, transgendered people experience discrimination. The same problem exists within the disabled world. An agency that serves the blind can be in a building without ramps or elevators. A wheelchair dance class might not rise to the challenge of including a blind wheelchair user.

Any service offered to accommodate a specific disability-related need is adequate making other accommodations unnecessary.
Disabled people are not created with cookie cutters. I read books best by use of audio recordings. Others blind just like me do better with Braille. Others love electronic books read to them by their computer's screenreader. Meeting the needs of one person with a specific condition does not mean you necessarily meet the needs of the next person with the same condition.

When you are disabled, other marginalized group identities become irrelevant.
I'm blind, chronically ill, bisexual, and female. They all matter to me. Enough said.