Wednesday, January 26, 2011

From Here to There

No matter how precise you can be about a destination, if you don't know where you are, it's impossible to plot a course. This is true for navigating highways as well as the complexity of human emotion. At the moment, I am a bit fuzzy on my "here," so "there" doesn't feel within reach.

It's all about the continuing medicalization of my life, because the ending of 2010 did not terminate the craziness. In short, the presence of my eye prosthetics might be an ongoing cause of increased mucus production which without a nasal airway, causes serious post nasal drip. That might be why the tracheal stenosis of last year is coming back. The leg pain I've been experiencing for over a year finally sent me to a doctor and the top two potential explanations both have limiting my walking for a period of time as part of the cure. In light of my new guide dog Emmylou, limited mobility is a wee bit problematic. Optimistically, it would be a refreshing change if my leg pain had an explanation they can not only find but treat.

It seems like I'm in a constant state of falling apart. I feel like less of a person, less a contributing member of society, and somehow less of a positive force. In fact, I feel like a black hole sucking up tons of resources with no return on the investment. Even the language I used – falling apart – shows that I'm perceiving current events as not simply a situation to manage, but a huge life negative. Where did I pick up the idea that having multiple medical issues decreased my value? Who taught me that medical resources should only go to those who would give something back? And when did it become alright for me to entertain the word "broken" in my head?

To be honest, all this medical "crap" is a pain in the butt. Scheduling issues alone sometimes make me want to tear out all my hair and you know how much I love my curls. Should I need to stop walking, it will add to the complexity of my universe. Then there's the increased contact with the medical profession which tends to see disability in ways contrary to my preferences. Therefore, yes, the medicalization of my life is a pragmatic negative.

Blindness can be a pragmatic negative as can Chronic Fatigue Syndrome, yet I do not believe these decrease my worth. This leads me back to my question" why do I think ongoing medical issues lessen my value?

Possibly I should have waited to write this entry until I could answer my question. Instead, I want to allow people to see that sometimes I struggle with fundamental issues and that I'm not this amazing source of strength. I falter. I don't have all the answers.

The silver lining in this particular cloud is that I'm completely aware of the ridiculousness of how I'm feeling. However, until I can understand my "here," I cannot get to a less annoying place.

Thursday, January 20, 2011

Ever Thought I Exaggerate?

Well, go read Did You Really Just Say that? and get back to me. I only wish I had the validating information of how people visibly react to me because, apparently, behavioral observations are considered far more subjective. Why is that?

Wednesday, January 19, 2011

Where Law Cannot Tred

In any civil rights movement, political activism has a key role. Same sex marriage is only one example of political activism utilized to change laws that will directly benefit individuals. Without political pressure, the American's with Disabilities Act would not have become law, but as so many pointed out on its twentieth anniversary, progress hasn't met expectations. The position people with disabilities inhabit in our society still reflects a second class citizenship where we are not full participants in the greater world. Why?

Disability, as a marginalized group status, is unique for a physical difference and/or "inability" is readily identifiable. In the nineteenth century, we saw how a tangible bodily variation effected societal status. Phrenology – the practice of determining traits such as intelligence based on the size and shape of the human skull – was used to rationalize the oppression of blacks. Today, those physical differences amongst the various races are considered irrelevant. On the other hand, disability is commonly defined as an inability to function in two or more major life areas such as school, work, mobility, and socially. Thus, group membership provides All that is necessary to justify our second class citizenship.

If my status was entirely based upon and solely limited to the fact that I cannot see, I might be willing to accept my position, but this is not the case. Take a moment to really consider this. How, after all, is my intelligence or competency in question simply because I cannot see? A person with a cognitive disability might be limited in terms of intellectual goals. Jobs requiring manual dexterity or physical strength are still legitimate options, yet an entire system of social services agencies exist just to convince employers to hire people with such conditions. What I cannot do has little in common with the beliefs that characterize my social status.

Society takes the inability – a fact – and adds what it perceives to be the implications of that truth. These perceived implications are based on fear, ignorance, and even well-intentioned compassion. Sometimes, as with blindness, it's inaccurate conclusions such as sight is necessary to bake. Other times it's more subconscious, such as fear shaping conclusions. The discomfort felt around a person with Down's Syndrome minimizes a desire for contact and the assumption that the individual has nothing meaningful to contribute because of their intelligence is an easy excuse. Even compassion leads down an erroneous road for often Deaf people are thought not to enjoy music and left out of invitations to go clubbing. (FYI, the base in of loud music can be felt.)

This crucial element of implication in the chain from difference to discrimination cannot be attacked with laws. It is embedded in the minds and hearts of people, perpetuated by what we teach our children, and magnified by a rigid societal structure. (Rather than embracing the idea of ramps, people are physically barred from public spaces, then devalued because they cannot access the places necessary to, say, perform a job. If disabled people are to be freed of their second class citizenship, hearts and minds will need to change.

Consider two pieces earlier published in this blog. You Can't Play gave a list of ways people like me are relegated to a lesser position and very few can be fixed by legislative act. Is There Disablism in Dating? argues that attitudes about disability subtly shape partner preferences. Is Congress going to pass a law that requires people to find me appealing as potential mate?

On the other hand, if we can alter the implication portion of the equation, it will ease the way for legislation or make it less necessary. After all, a law is only needed when people aren't going to do the right thing on their own.

Does this mean I think political activism is pointless? No way. I do believe that shifting how people conceive of disability deserves more effort and attention. WE need spokespeople that immediately pop into American's minds when they think about disability. How many of you know who Judy Heuman is? Justin Dart? Steven Drake? I'm certain Ellen Degeneres and Jesse Jackson are both known to you. Can you even think of someone with a disability who is in the public eye changing how society perceives physical difference?

With this blog, I try to be one of those people, but first someone must stumble upon it. Many disabled folks are doing the exact same thing – using the web to educate. Sooner rather than later, I believe we will reach some critical mass and a few articulate disabled people will emerge from the cyber world into real life. Making use of all the lessons I've had about "positive language" and manifesting what you desire in your life, I'm jus going to put out there that I will be one of those people.

Wednesday, January 12, 2011

Greener Grass

Often I have heard comments about people on SSI, SSDI, or other forms of social welfare support that boil down to, "It must be nice to not have to work." Lately I've been schooled in why that's anything but the case. The greener grass is actually concrete covered with green paint. Or maybe it's a green, slimy pit of quick sand.

Reading this entry, you are probably going to become bored and/or confused. Since this is simply a condensed version of my "greener grass," you might want to give some thought as to whether or not it is a kind of green you wish to envy.

The Social Security Administration (SSA) made a mistake whereby they noted my bank accounts multiple times making it seem like I had more than the $2000 I'm allowed to have in assets. And, yes, I can't have more than that or I lose my SSI and good health insurance.

I invested effort in resolving this to the tune of seven letters, about seven hours in the SSA waiting room, and hours organizing materials. It took that just to get someone to delete a few bank accounts from the system. It also cost me the $50.00 they garnered from my benefits while I took the six weeks to get them to correct their error.

Now to the second SSA problem. I have a life insurance policy that I recently discovered had a cash surrender value SSA counts as an asset meaning it is considered a part of the $2000.00 maximum I'm allowed to have. This meant I was over that maximum and had to spend about $1300.00 in less than thirty days and it could only be on certain types of purchases. It was a major pain in the neck, took hours to do, and required help from various friends to accomplish. Last week I discovered all that was unnecessary because I consider the life insurance policy to be for my burial expenses. So now my savings account is very small making me nervous and it didn't have to be this way.

Then there's my prescription drug coverage. I was told my antidepressant would no longer be covered in the name brand version. Since I have a bad reaction to the generic, I called my drug plan to ask some questions. I was told the 100mg and 200mg versions would be covered in name brand, but not the 150mg tablet I needed to constitute my 350mg dose. To me, it seemed like a no-brainer to get them to cover my dose as well.

I warned my doctor's office about this in December and they chose to wait until I needed the medication. Now they are having trouble getting authorization. In trying to sort that out, I discovered I had been misinformed about 200mg and 100mg tablets being covered. *bangs head against wall*

In the meantime, I have a transitional override to get my meds. Sounds simple, but somehow the pharmacy who could do my insurance in December can no longer accomplish the same feat. The computer "rolls over" at the first of the year and has dropped a byte throwing a wrench into the works. I discovered this after waiting forty-five minutes at my pharmacy.

A couple of phone calls and an hour later unearthed the factoid eaten by the computer: my father is retired. Yes, it was that simple yet impossible to figure out.

Believe it or not, I actually have an easier situation than many because blind people are often protected in ways other disabled people do not enjoy. My grass might be a slimy, green pit of quick sand, but theirs is inhabited by leeches and jellyfish.

Worrying about money these days seems to be a universal, but there are degrees. Some are concerned about how to pay for their car, house, and vacation. Others fear not being able to make rent, eat out, or buy a friend a birthday gift. Still others worry about affording adequate health care and food at the same time.

Next time you think someone's grass funded by social welfare is more lush and verdant than yours, consider what costs come with such luxuries. I guess if you love jumping through hoops and using a machete on red tape it will be right up your alley.

Wednesday, January 5, 2011

It's in the Eyes

[This is a follow-up to Eyes and I.]

Having matching prosthetic eyes has been both what I expected and anything but what I predicted. Though I know I made the right decision for me, I have yet to feel comfortable with this new version of myself. And there's absolutely no forgetting they are there because they make themselves known in countless ways. For example, over the holidays I discovered that your eye lids don't like touching the freezing surface of acrylic. It's like touching any mucus membrane to cold plastic. Ugh.

There are moments when I forget they exist and go through my life pretty much as I did prior to all this eye craziness. It's peaceful to just be the me I've always known. Then some physical reminder will transpire and I'm back to consciously knowing I'm different from before. I pause during the day and take deep breaths trying to inhale a new self-concept that includes these eyes that I try to not view as other. They might come out, but they are me. Trying to wrap your mind around that is not exactly easy.

The other mind-bending aspect of this is other's reactions. Actually, it's the lack of reaction. Friends who have known me for years have literally not been aware of the change. Apparently the ocularist made eyes that so fit me that they look like they've been there my entire life. Since I'm not sighted, I can't exactly judge what superficially seems to be a deficiency in observational skills. Not noticing? It blows my mind each and every time it happens.

Based on who has and has not noticed, I have come up with a determining factor – how the person felt about my appearance before. I suspect those actively disturbed by it are aware of the change because they are aware of how I look in general.

Part of me worries that those who do not see changes in how I look may have gotten to a point where they don't really see me anymore. Did that "not seeing me" happen as a coping mechanism for being around me? The idea that people must not truly see me to be comfortable around me is upsetting and all too familiar.

Then we have changes in behavior. One man who I know in a wait staff capacity suddenly became much friendlier, making certain I knew his name, tossing off "good night" or "take care" when I walked past him out the door, and trying to strike up conversations. I'll admit it freely. My response has been polite indifference. Personally, I think he's lucky I haven't given him a lecture on not treating people differently based on how they look.

And of course there was the "beautiful" incident. I encountered an acquaintance who hadn't seen me in months. While it took a minute for the difference to register, when it did her reaction was the most intense thus far. She said, "Oh, wow, your new eyes. They look great." Then her voice changed as she cupped my cheek in her hand and said, "You look beautiful." I held back, "I looked beautiful before, too. Glad you finally noticed."

Finally, the other day I am pretty sure my request for the Cheese Man to go above and beyond was met because I asked in a funny way, tossed my hair, and smiled. Never has that happened to me before. There's a certain heady power in it that I hope I never exploit.

So has this changed my thinking about anything? Yes. It dawned upon me recently that I am walking around with less about me that gives people pause. I have long posited that physical differences such as scars, abnormal features, or deformed eyes loom so large in other's perceptions that they are unable to see the individual. Not only are my physical charms beyond their ken, but they don't really notice my intelligence, sense of humor, or quirky personality. My physical difference blinds them to who I am.

Now with my "normalized" appearance, there is less to kidnap other's awareness. This will shape my interactions in ways I cannot ever know for such a thing is impossible to assess. Its impact on dating does seem clear to me. With less obscuring me, people will have a better chance to know me which I find disturbingly wrong, but nonetheless my new reality. On one hand, I will never know if a person would have found me attractive before. On the other hand, I won't object to an increased chance of romantic entanglements.

I mourn the loss of my old appearance. It taught me so much about society and human nature. With my new eyes, I am now experiencing the world in a different way. Much of it makes me even more convinced that societal standards of appearance are wrong and need to change. If anything, I am more motivated to change the world.

Saturday, January 1, 2011

What 2010 Taught Me

As all of you know, 2010 has been quite the year for me. With medical insanity around every corner as well as personal tragedies, I sometimes wondered if I would survive the onslaught. At the turn of the year, I'm permitting myself to engage in a wee bit of introspection because as you know, I am never otherwise reflective

1. Though I knew I possessed emotional strength, the events of this year showed me a resilience I not only didn't know I possessed, but I didn't imagine existed in mere mortals. I amazed myself. And, yes, I said amazed.

2. My health can take a beating and I will recover, so I do not need to live in mortal fear of the next medical issue's destructive impact.

3. Friendships might be even more complicated than romantic relationships.

4. I never regret following my heart. Now if only my brain had an off switch.

5. The things I thought I was good at are things I now KNOW I am good at. I have skills and talents that possess the ability to impact more than just myself in a positive way.

6. Laughter can transform, heal, and pretty much save sanity.

7. I can truly and completely fall to pieces and the only person needed to put myself back together is me.

8. If you view the actions of now as the story you will look back upon in years to come, it is sometimes easier to find your way through muddy waters. This year I have learned that when I get stuck, I need only ask myself, "How do I want to remember this moment?" and suddenly things become clear.

9. People, myself included, often hold back from going the extra mile for a "friend" because they believe that person would not do the same for them. I have come to realize that it is more about making sure you go the extra mile for those you know will do the same in return. It's not about who isn't going to do what. It's about lavishing attention on those you want to be a part of your life. Making it about opening up your heart and giving freely feels much better.

10. A year full of Hard Things can also be the best year you have ever lived. 2010 has been that for me.