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.

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.]

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.

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.