Like seemingly everything in my life, gratitude is a complicated issue for me. The looming holiday has inspired me to write about it along with an accounting of my blessings.

More and more, people in my neighborhood have taken to calling out to me when the intersection light indicates walking is safe. The crossing in question is possibly the hardest I have ever encountered, because its traffic patterns do not lend themselves to auditory determination of cars stopped in response to walk signs appearing. I have been known to wait five to ten minutes for the circumstances to arise that make me certain I won’t become road pizza. A few times I have been very, very wrong and I still do not know why I was not in need of pepperoni. Whenever somebody calls to me that the light has changed, I feel relief and gratitude. A “thank you” does not seem sufficient to express my appreciation. To many it seems like such a little thing, but to me it makes a huge difference.

There is another kind of help that does not inspire gratitude within my heart no matter how hard I try to prompt it. People offer help that at the least I do not need and at the worst will actually be detrimental. Polite refusal meets with determined insistence that I accept their “suggestion” and these individuals want my grateful thanks. Even worse are the folks who have decided, correctly or not, my intended destination and silently reach out and nudge me. First of all, excuse me, but when was it ever alright to randomly touch women without saying a word? Second, while I know the people in question are just trying to help, I am unable to overcome my dislike of the behavior to express let alone feel appreciative.

Sometimes I think that is a very sane state of mind and other times I feel like the most ungrateful person on the planet, the latter usually happening right after I’ve complained to a friend who then points out “They were just trying to help make sure you didn’t run into something.” Guilt and gratitude are not synonymous, though. I have been told more than once that my problem is pride. I suppose that makes sense since help that feels demeaning bothers me the most. I would like to know, though, when receiving help meant giving up one’s dignity. An understanding is slowly growing inside of me that says people want to help but expediency is a primary consideration. In picking the most convenient means of aiding somebody dignity is often ignored because of the larger amount of effort involved to keep it intact. On an instinctive level I know those who think I should feel appreciation for whatever help is given would sing a different tune if they lived my life for more than an hour. Or maybe I’m just trying to find a justification for my prideful ingratitude.

Frequently I baffle people by telling them I would not rid myself of my disabilities if it were offered without strings. For me, the experience of being disabled –good, bad, and hard — has been a major formative factor responsible for the person I have become. Since I like who I am, it follows that I would appreciate what has shaped me. In many ways, I am grateful for even the hardest aspects of my life. Rather than seeing myself as having Overcome my circumstances, I consider myself a product of those circumstances. The metaphor of diamond being a result of coal subjected to extreme pressure might be schmaltzy and overstated, but contains a grain of truth for nobody says, “Wow, look at that diamond. It went through all that stress and survived.” Instead people appreciate its aesthetic appeal sometimes not even cognizant of what brought it into being. I am not, will not, and would make a face if you compared me to a diamond, but I do feel grateful for the forces that have wrought me.

On a less philosophical note, I am appreciative of many things that have happened in the past year from new friendships formed to older friendships deepening. In 2009 I have collected more than a handful of incredible experiences I will remember when I’m seventy-five. Even things with my family are morphing in a positive direction. Furthermore, I have managed to exercise regularly for over nine months which is the first time that has been possible in about eighteen years. Now I can consider doing multiple energetic things not just in the same week but in the same day. My immune system has managed to fight off colds and infections that would have flattened me for weeks even 3 years ago. Maybe it’s the acupuncture. Maybe its the supplements. Maybe it was simply time. The cause is far less important to me than the outcome which I appreciate more than I think anybody realizes for it is not just hard things that shape who we are but also the softer, uplifting ones. I will admit living through changes brought about by benevolent forces are far more pleasant.

Finally and most significantly I feel intense gratitude that, no matter what happens PerkyJen always emerges. I am not certain if that is a sign of strength, a determined spirit, or what, but I know in every cell of my being that I can get through whatever appears in my path. Sorrow, fear, anger, and spiritual weariness may occupy my mind and heart for a time only to be replaced by a pleasanter emotional landscape. This tendency is so strong and reliable that I will cling to the knowledge of it in the midst of whatever hard thing is happening. I think half the time knowing that makes it possible to get through the latest complication. Thank goodness.

Chip on my shoulder

I have a friend who instinctively understands the way I experience the world as a disabled woman with one notable exception: we often argue about the psychology behind others’ behavior. Usually it comes up when I’m griping about being ignored in some social situation. While some people try to convince me everyone is isolated in group settings making my experience commonplace, this particular friend acknowledges the behavior and its uniqueness, but contends my understanding of motivation is totally off base. Her position has changed instantaneously, utterly, and unequivocally.

The transformation was accomplished by the experiences of David Mixner, a writer and long-time activist on issues of civil rights, HIV/AIDS, sexual orientation, and war. Recovering from illness, Mixner needed to use a wheelchair and was blown away by what he discovered which he chronicled at I told my friend a brief version of what happened to Mixner when he sat in his chair at a Whitehouse event attended by many of his friends and acquaintances. Previously these individuals would have approached to converse, but while Mixner occupied that chair, he received a few nods and smiles with little actual contact. Essentially, he was ignored.

After I conveyed the incident, my friend said, “Wow, that makes no sense. You must be right about people thinking you’re contagious or something.” Like most, I enjoy being told I’m right, but the conversation did not leave me with the glow of long overdue validation, instead a vague disquiet. It took the words of a TAB stranger to accomplish what years of conversation could not despite my academic background in Disability Studies and lifetime of experience. I felt irrelevant.

Loathing that feeling, I tried to wrap my mind around why people dismiss my observations and hypothesized reasons for behavior. One possibility is simple – if I cannot see what people are doing, how can I observe with accuracy? Ears. I have ears. I realize that reliance upon sight causes most to not comprehend what can be determined by sound, but I am an expert at the auditory. Sighted people read body language and I read the language of tone, act, and reaction. Unfortunately, ears are not granted the reliability of eyes, but if a tree falls in the forest and you only hear it does that mean it didn’t happen?

My perceptions and theorizing are dismissed for other reasons as well. If my observations were granted validity, then people would have to also recognize humans are often idiots. It is far easier to decide one person is wrong than to acknowledge we live in the kind of world where individuals are ignored because they are sitting down instead of standing. Refusal to concede this truth does not prove its falseness, rather it hinders social progress for admission of the problem must occur before it can be addressed.

The most frequently mentioned reason that my observations and hypotheses are wrong is the chip I carry on my shoulder. Apparently I mostly have a bad attitude when it comes to TABs. I jump to the wrong conclusions, create motivations out of nothing, and generally take everything personally. Guess what? That’s all entirely true.

My chip has been formed over time shaped by accumulated experience filtered through my personality. The balance of formative data tends to be negative creating chips, but there are also people who have been fashioned by positive events. No maladaptive stigma is associated with their perceptual tendencies. Whether burdened by a chip or not, probabilities, predictions, and assumptions are the tools we all use to navigate life from relying upon our alarm clock to wake us to knowing the waiter will bring you food after you have ordered. Because my assumptions are about negative things they are transformed from advantageous life strategies to bitter conjecture.

I confess here and now that I misinterpret behavior and motivations with some frequency, but I am right more than I’m wrong. When possible, I’ll check my assumptions with the person, often interrogating a friend about their initial reaction to me. I compare notes with other disabled people, read memoirs of disabled folks, and study how other disabled people are treated in my presence. Speculative though my conclusions may be, they are not made in a vacuum nor are they rigidly carved in stone. New data changes old impressions and I try to maintain flexible thinking. I am completely certain I make mistakes, form inaccurate conclusions, and think not nice things about good people. I admit to being human.

Negative though my interpretations might be, they are not necessarily false. While I wish we lived in a world where my physical difference did not impact the actions of others, I have witnessed a different reality that refuses to submit to my will. I am going to leave you with an often repeated sequence of events. Perhaps you will find an explanation that I have yet to consider.

I walk up to a bathroom and there is a line. Somebody either at the front or in the middle of the line says that I should go before them. This offer has not been made to anyone else. Polite refusal tends to meet with insistence on the part of the offeror. How is this neither ignorant nor condescending?


Like everything else, humor comes in all shapes and sizes. This month’s first story falls into the category of so bad that it passes into the realm of absurdity. It came to mind when I was writing the history of my medical situation.

The summer I turned 18 I had my jaw surgically broken and wired shut. Because I only breathe through my mouth, there were concerns about oxygen supply, so they did a tracheotomy. (They cut a hole in your windpipe and insert a tube through which you breathe.) The two unexpected consequences were pneumonia and an inability to speak. All the coughing you would expect with pneumonia happened through that trach up to and including bloody mucus.

This surgery took place in Virginia a couple of hours from my Aunt’s home. While I was at the hospital, my sister and a cousin (not the Aunt’s child) visited with my Aunt and her kids. For better or worse, in my family, people are “protected” by not being told negative things if they are already in a stressful situation.) Therefore, it was only after I was discharged from the hospital and we went to retrieve the two visitors that we learned my sister had broken her foot. For the eight hour trip home in our little car, we have me coughing up a storm in the front seat while my sister had her foot propped up in the back and my cousin was wedged in somehow.

Having your jaw wired shut means liquefied food. Since I was unable to even drink, I used a huge syringe to suck my meal up and then squirt it into the back of my mouth. Our long trip home necessitated a stop for food. Picture this: we were in a restaurant with my sister on crutches and me with a trach, coughing constantly, while consuming pureed clam chowder with a syringe and trying to communicate with gestures.

The story gets better. Mom must have been very stressed out and consequently speeding because we were pulled over by a cop. Poor cop. Poor Mom. I engaged in some strategic coughing and my sister and her huge white cast were easily visible in the back seat. The officer let her go with just a warning. The second time – yes, you read that correctly – it was the dark of night and the officer new my family slightly. I guess coughing wasn’t sufficient to sway her because that time Mom received a ticket.

The second story has no tragic elements, instead offered to leave you on a cheerful note in case the above didn’t fill you with hilarity. After reading a previous entry, a friend of mine reminded me of this event’s occurrence though I still cannot clearly bring it to mind.

The basic story will be familiar to you. We were hanging out in a coffee shop and a woman engaged us in conversation. She went on about how nice it was that my companion helped me. My friend fielded these comments as graciously as possible while avoiding continued conversation. Eventually, the woman went away.

When my friend went to the counter to get drinks, the woman approached her again and said, “Oh, it’s so nice how you help her.”

My friend replied, “She’s my friend. I do things for my friends. They do things for me.”

“You’re just such a great person,” the woman enthused, “what do you enjoy most doing for her? What makes you feel the best about yourself?”

With a straight face, my friend answered, “Oh, well, just before I leave I re-arrange all the furniture and the thought of her stumbling over it gives me great pleasure.” Not waiting for a response, my friend walked away.

I am running out of amusing tales with which to regale all of you. If it’s not too much trouble, send out some vibes that will encourage people to do wacky things. After all, it will at least make me laugh — always a worthwhile endeavor.

Desperately Seeking Angry Jen

Lately I have been unable to avoid the fact that I have changed and not for the better. Instead of being filled with indignant rage at acts of disablism, I start thinking about how the other person must feel, make excuses for bad behavior, or let obnoxious attitudes continue unchallenged. Even in this blog, where I try to be so honest, I avoid certain topics, including examples that involve people currently in my life because I do not wish to upset friends or family with my words.

Vague feelings of missing my former self have been around for a while, only coming to a head as a result of a recent event. Apologies to the person involved. Or maybe that should be gratitude since I finally confronted something important. I was at a bonfire roasting my hot dog over the flames. Across the blaze, A friend looked over and told me my face was extremely red. To me, this was not a big deal, but my friend persisted. Blaming the redness on a failure of sunscreen changed nothing. He wouldn’t drop it until I moved back. A lot.

Did this annoy me? Definitely, but I made light of it because I recognized he had just hit the “overly concerned” phase most go through when getting to know me. What would be cause for worry for most people is not even a blip on my personal radar since my body does odd things all the time. Fretting is reserved for big events, like my face swelling and hurting so much that it interferes with eating. Though I appreciated being told, I didn’t appreciate the degree of concern persisting past me saying everything was fine.

Why didn’t I say something? I recognized what was happening and knew the phase would pass. Rather than force the issue, I let go. Formerly, I would have spoken up asking him to back off and show some respect for me by accepting it when I said things were fine. I want to know where that Jen is now.

As one of my earlier entries indicated, 2009 has brought up tons of romantic relationship issues for me. One unfortunate part of dating is how friends and family of the other person react to me. Often, badly. Grandfathers try to talk their grandsons out of seeing me expressing concerns about how much care and attention I will require. Mothers have tried to talk their sons out of dating me. Friends have expressed concerns. It is ridiculous, disablist, and based on misconceptions about me along with a complete disregard for my positive qualities.

I was pondering this happening again a few days after the bonfire situation. Guess what I realized? These concerned friends and relatives are just going through a phase and once they know me they will get over it. Hello? Where’s my indignation? Do I really think I should stand by and let this happen? I thought passive tolerance of outright stupidity was not my thing, but apparently I’ve changed –I am fine with being valued less than a cat.

One more example that has informed my opinion that I’ve lost my edge. A friend has a couple of kids who I have been around frequently. Earlier this year, when one of these kids was asked about me, she said something like, “Oh, so and so helps her.” There was not a thought given to all the things I do for myself let alone any of my talents and abilities. I was reduced to somebody in need of help. Made me so mad I almost screamed.

Instead, I brought my concerns to a friend of the family, who said it was no big deal. I let that convince me to leave it alone. In the past, I would have sat the child down and explained to her that while I did need help occasionally, I also did many things for myself sometimes even helping others. In asking her specific questions, I could have reminded her of all she has seen me do independently. Even teaching her something I could do that she could not would have fostered positive change.

From the above incidents, I have been left with a muddy tangle of feelings magnified by my own frustration with my passivity. I have become so keenly aware of how others feel that I have made myself tolerate what I know is wrong. The “mustn’t offend” has overpowered the “I’m offended.”

I dearly miss the cleansing fire of pure anger — the certainty of knowing people should not say/act /perpetuate the things they do. There is a sense of self-worth inherent in the knowledge that another person is wrong, not based on superiority but on knowing humanity and individuals can and should do better. While I like myself more now than at any other time in my life, I am aware the clear flame of anger would add something I currently lack. Becoming a person filled with anger who lacks human compassion is not for me, but neither is this passive person I have become. Somehow I want to reclaim the good parts of that kick ass, take names woman of years ago while leaving the bitterness and self-hatred behind. I must temper indignation with compassion exercising grace and tact. As we all know, I have those two things in abundance. (Yes, that was sarcasm.)