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 cliché, I’m following my dream – my 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?

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.

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.

Doubt Should be a Four Letter Word

I have been trying to wrap my head around how years of chronic illness may have subtly and not so subtly shaped my thinking. Recently, I stepped down as co-coordinator of San Diego Bisexual Forum and with all this free time, I’m pondering how to occupy myself.

Over the past few years, a pattern has emerged in my life. Summer-like weather is accompanied by a surge in energy and each year there’s a little more than the last. About the beginning of April, I start considering how I wish to spend this “excess.” The first time around in 2007, I simply enjoyed being able to do more than normal. In 2008, I became involved with Bi Forum. Last June I decided to start this blog. And this year? I’m having a crisis of confidence. Doubt fills me at every turn.

Nineteen years of chronic illness has taught me to discount whatever I want as soon as the thought pops into my mind. Noting perfect beach weather, I begin the list of cons immediately. Walking on lose sand makes my hips hurt. Cold water isn’t much fun. Sand gets everywhere. It takes energy to clean up stuff later and I’m already tired. Besides, it takes a car to get there. With all that, I no longer want to go to the beach. I want a nap.

As anyone in shoes similar to mine will tell you, doing too much or pushing yourself too hard risks making your symptoms worse. Unfortunately, there is no precise formula by which you can determine the value of “too much” or “too hard.” Moreover, those values change constantly based on what seems like an infinite number of factors. Educated guesses can be made, but it is no more an exact science than solving the chicken or egg quandary. Thus, if I don’t talk myself out of wanting to do something, I still have no way to know for certain that going for it will not worsen my symptoms.

And then there’s how chronic illness impacts confidence. The skills and talents necessary to build a group from the ground up are not those used to manage a chronic illness. While I was unable to get off my couch, any gifts I did not use to cope with that situation atrophied and as with a limb that has not been used for a prolonged period of time, the chance it will hold your weight at first attempt is miniscule. Until I actually try, I have no way of knowing if my abilities have vanished while I was in survival mode.

One of the ways humans know about their skills and talents involves affirming feedback. When we succeed, we not only directly see the positive effects, but also we receive accolades for our efforts. With chronic illness, there is no real way to shine. Getting off the couch, managing to shower, and et three square meals in one day is just not fodder for building self-confidence

Here I am contemplating endeavors I have never tried before. My mind is well practiced at generating all the potential problem areas. I have vivid images gained from experience illustrating how bad it can get if I push too hard or do too much. I’m hoping atrophied mental muscles will meet a challenge, though I lack concrete evidence. To top it all off, I have no recent evidence of success in the areas I am considering attempting.

Knowing all this is not the same as understanding a means of combating it. Acting in spite of fear and having faith are two possible techniques, but both require emotional energy and fatigue is incredibly insidious.

Besides, the couch and a good book have a power all their own. They call to me and say, “Why try so hard and struggle when you could choose something that makes your life easier? You can feel les tired, not do something that risks your health, and enjoy yourself. Isn’t that better?” It boils down to picking a wish that causes every instinct honed over years of living with a chronic illness to jump up and down with objections.

But my heart wants and I cannot totally silence it.

Blindness v. Medical Profession

First there was the eye. Then there was the trachea. Two different body parts and two distinct experiences one atop the other making their disparity so apparent even a blind person noticed. And I believe that was the reason for the difference – my blindness.

Eye Doc came into the office, didn’t quite know how to shake my hand, and spent some of the appointment looking away from me focused on paperwork. Pulmonary doc entered the office, introduced himself with a normal handshake, had a conversation with me about the situation, and then paged Trachea Doc who was in the office within fifteen minutes.

Trachea Doc’s handshake was natural and he sat next to me for our conversation. Perhaps position or some other audible queue indicated with 95% certainty that he looked directly at me as we spoke. At the end of the consultation, Pulmonary doc personally guided me back to the waiting room. That usually doesn’t happen.

The time came for procedure explanation and my endless questions. Because of my vast amount of medical exposure, I am not your standard patient nor is my body typical. Eye Doc was impossible to reach, seemed unable or unwilling to recognize I’m not your average patient, and was uninformative. Trachea Doc sat next to me and explained everything answering all my crazy questions. After I have explained that medical procedures tend to have odd results, he obviously registered this information because he referenced it later in conversation. When he realized I have parents will be very concerned about the situation, he offered to call and speak with them directly.

Both Eye Doc and Trachea Doc came to see me in pre-op, but Trachea Doc hung out in the operating room before I was put to sleep. While he assembled supplies, he stood next to the table and distracted me with Small talk. In all of my twenty-something surgeries, I cannot remember this ever happening. Ever.

While I am not done with follow-up, I already have some data. The day of my trachea surgery, I ran into Pulmonology Doc in the hall. He greeted me by name, knew enough to tell me his name, and was aware of my surgery that day. Eye Doc has warmed up to me slightly and our handshake is less awkward. He also seems to find me more interesting to study than paper. Trachea Doc gave me his email address, repeatedly has told me to call if I ever have a problem, and made it crystal clear he considers any concern I have to be worth his time.

Treating physicians rely upon staff and other medical professionals who have a myriad of reactions to me. Eye Anesthesiologist listened to my concerns proving it when he concluded our conversation with a summary of the salient points. He then did his best to distract me as I had requested. Trachea Anesthesiologist seemed to hear what I said without it quite registering. Although I expressed my visceral fear of oxygen masks, a result of having them held over my face as a child, she not only insisted upon using one, but I think she put some downward pressure upon it.

Eye Nurses were ill-equipped to interact with a blind person. The worst problem was continually having them come into my cubical and start doing something without alerting me to their presence. Then they would leave without letting me know. A friend tried explaining the problem and asking that they at least announce their comings and goings, but it had absolutely no effect.

Trachea Nurses largely seemed comfortable with a blind person and those who were uncertain addressed the issue directly. Because of my Eye Nurse experience, I made a point to tell the Trachea Nurse-in-Charge to make certain people announced their arrivals and departures which might explain the difference in behavior.

Here’s the thing: Eye Doc is supposedly one of the best in his field practicing at an eye clinic with a stellar reputation. AS part of the same medical center, I am certain Trachea and Pulmonary Doc aren’t slouches either, but I have no objective data. I thought age might have something to do with the difference, but Eye Doc and Pulmonary Doc are equivalent in maturity. I’d chalk it up to human variation, yet Trachea Staff consistently behaved better. Honestly, I have no explanation for the disparity.

I would like to point out one thing. By the nature of their patients, Eye Doc and Staff have a better chance of encountering blind people in their daily work. You would think it would show in behavior.