Reason’s Vanquisher

In excruciating detail, I can create a voluminous list of all the ways it is communicated to me that I am of less value because I am disabled.  I can then offer explanations and arguments to counteract each item.  My skills are sufficient to convince you that I have worth.

 

Now if it would only work on myself.  Reason is a wonderful tool that is not adequate to the challenge of conquering the emotions of irrelevance and devaluation that currently rule my insides.  My reason lacks the tensile strength to overcome the indomitable force these negative thoughts and emotions wield.

 

The depression I’m experiencing because of current life stress and mental health issues definitely saps reason’s strength.  It does not, however, generate the need for reason to be so powerful.  the might reason would need to surmount the negativity is defined by the power of that negativity.

 

What is responsible for negativity’s capacity to overpower reason?  Society in general and the individuals that act out its beliefs in particular.

 

The thoughts and feelings an individual has about disability informs their actions and those actions transmit those beliefs to people with disabilities.  Complimenting a mundane task demonstrates the lower expectations used to judge the person with a disability.  Refusal to accept a “No thanks” to an offer of help illustrates devaluation of the disabled person’s judgment.  Even running up from behind to hold a door for a person with a disability conveys the assumption that the person was unable to do it themselves.

 

Whether it is meant or not, whether it is intentional or not and whether the intricacies are understood or not, behavior communicates beliefs and those beliefs have power.  A lot of power.  Counteracting them takes a significant and constant force of will.  It is a battle people with disabilities engage in each and every day.  It is a war without an end in sight where victory is never possible because the “enemy” has an endless supply of assets.

 

There are a lot of battles I’m currently fighting and they are consuming vast resources.  I have nothing left to wage war against the societal devaluation that comes at me without end.

 

Words and deeds matter.  Take care that you are not unintentionally contributing to the strength of the negativity people with disabilities must beat back each and every day.  And, if you need self-interest as motivation, remember that non-disabled people become disabled each and every day.  The negativity you put out there might turn on you down the road.  Do you want to battle it?

 

What does It Take?

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?

Through My Eyes

When I meet a TAB (temporarily able-bodied) person, they are not the first, second, or even third member of that community I have encountered. Having grown up in non-disabled society, I am very familiar with what it means to be non-disabled. I know about mortgages and kiddie carpools and working moms and stay-at-home dads and midlife crises and divorce and being elderly. I have been steeped in non-disabled culture to such an extent that it is second nature to understand the lives of the non-disabled people I meet every day. I don’t need to have lived the experience to relate to it because of my massive exposure.

I am quite often the first disabled person a TAB has ever met. That individual has no frame of reference, no vast exposure, no years of observing other disabled people to help them relate.

Instead, TABs rely on other means to understand such as imagining what it would be like if they were blind. Unfortunately, lacking any knowledge of the specialized training I’ve received or years of experience I’ve gained, TABs can create a very skewed impression of what my life must be like. They then call upon this inaccurate perspective to attempt to comprehend, evaluate and judge my life.

These efforts fail miserably resulting in things like: “Wow, you are so amazing. I can’t believe a blind person can…” “I’m so inspired by you.” “It’s such a shame you can’t see.” “You must not be totally blind because you just…” “You can’t see, so let me do that for you.”

People can become very entrenched in their beliefs, assuming thirty seconds of imagining what it would be like to be blind is more accurate than the reality I–a blind person–describe. I’ve had arguments. Lots of them.

TABs thinking they understand what it’s like to have a disability better than someone *with* that disability are not limited to imagining walking in our shoes. Basic beliefs about how the world works can inform reactions. Those who think people are essentially good have trouble comprehending someone being unkind to a person with a disability. Customer-service people tell me to ask my neighbor to read my mail believing they would read the mail of their theoretical blind neighbor. Folks who believe our social-welfare system is adequate and flourishing act like I have help coming out of my ears to accomplish any task I want. How a person sees the world impacts how they see my life.

I’m discovering this phenomenon of “I know better about you than you” is more insidious than the smell of skunk spray. From strangers, it is somewhat excusable for they have little data to use besides their own imaginations, view of the world and some dimly remembered after-school special. Friends, however, should in theory know better because they have evidence gained over time both through observation and direct conversation. And yet, often friends of years fall back on this attitude of knowing better than me what it is like to be me.

This phenomenon is not unique to the disabled versus non-disabled populations. Men think they know what it’s like to be a woman better than women. “Oh, honey, that guy in the hardware store wasn’t being condescending. You’re overreacting.” Those outside a marginalized group often dismiss what a member of that marginalized group conveys about their experiences substituting their uninformed outsider view for that of an expert.

When, exactly, did it become reasonable, let alone smart, to take the opinion of a lay person over that of an expert?

I just lost a friend because of this. He firmly believes that his assessment of how I’m reacting to my current emotional turmoil is somehow more valid than my own. He’s never lived through any of the things I’m struggling with, but he is certain it’s perfectly reasonable and possible to handle them in a better way. I refrained from saying, “How about you try and let me know.”

When There Are Words

It’s odd how having words to describe a situation changes how you relate to it. The mess going on inside of me hasn’t actually morphed into something that is comprehensible. Having words, especially ones I can share with others, feels like the same mess is encompassed by some sort of boundary in which it resides without spilling over.

I’ve already used many, many words to describe the portion of the mess associated with my feelings of isolation and lack of human connection. I now have a way to describe the other portion related to my Post Traumatic Stress Disorder (PTSD) and described in recent entries.

I experienced childhood medical trauma that led to adult onset of PTSD. With therapy, I was able to manage the symptoms and make inroads into recovery. For me surgery of any kind bares enough similarity to my original traumatizing experiences that my brain tended to react as if it was trauma. Over a two and a half year period, I underwent seven surgical procedures and with each the PTSD symptoms were less – a net gain in PTSD recovery.

Then, I was traumatized by events surrounding a surgical procedure. At the time, I did not respond significantly to the trauma aspect, instead suppressing much of the emotional response. With yet another surgical procedure on the immediate horizon, there has been a resurgence in PTSD symptoms including nightmares and triggering of flashbacks and body memories.

Words. All neat and clean. I’m slightly worried that my ability to convey them in a calm manner is in fact me further suppressing my emotions and that what feels like containment is in actuality minimization of the real trauma I experienced. Guess we will find out.

 

Misery, Desperation and Nightmares & Dreamscapes

From Charles Dickens we move on to something reminiscent of Stephen King. After the events in , I had two doses of anesthesia and from a PTSD perspective, everything went well. In fact, by the third procedure in October 2012, I was starting to feel like it was a routine event. Totally and dramatically wrong. A failure of imagination as well as not attending to multiple warning signs are the only explanations I have as to why I was …. blindsided..

First, there was the orderly who thought I could see and was surprised I was sighted. Then there was the O.R. nurse similarly uninformed and also not aware of my lack of a nasal airway. There was then a floating nurse who thought I could see. Three in a row should have raised my suspicions, but I explained it away as a lack of charts being read with any care at all.

Next there was the anesthesiologist who I’d encountered before. He wasn’t my favorite, but nobody can live up to AnesthesiaSaint mentioned in the previous entry. However, when he asked what music I’d like to hear, I told him and he IGNORED ME, I should have paid better attention. When he continued to disregard most of my requests for how I wanted him to interact with me, there should have been red flags doing the cha cha in my head. Not knowing I’m blind is one thing. Totally ignoring what I want is another case altogether.

I came out of anesthesia and was told, “We are moving you to your bed now.” They didn’t give me a direction, which is typical for people who don’t know how to behave around a blind patient. I went to ask, “Which way?” and discovered I couldn’t talk well. There were sounds I was unable to make. I tried asking the question in other ways, but was more or less ignored. So I tried all the nonverbal communication skills I know, including trying to fingerspell, which is when I realized my right arm was fairly numb and unresponsive. I started getting pretty agitated. Nobody really did much to sort it out. I was the man having the breathing treatment who was shot down when he tried to get the reassurance he needed. My brash proclamations that I had the skills to handle such a eventuality crumbled in the face of medical staff unable to notice that I was communicating.

Finally, I managed to get across a need for pen and paper because I found ways to express the concepts using sounds I could utter. I demanded my doctor. It took extreme insistence to get him.

My awesome, amazing TracheaDoc was not prepared for the situation and handled it suboptimally. He had no idea I had just experienced enough trauma to take my PTSD from “mostly managed” to “completely out of control.”  That’s because doctors aren’t educated on such things. Unfortunately, in this one way, he turned out to be like other doctors. Guess he’s not superhuman.

He did share one crucial fact – the paralytics used in surgery hadn’t worn off and my vocal cords were effected. Also, the blood pressure cuff had cut off my circulation. I pretty much cursed him out saying he’d better be right or else with a few tears managing to escape.

You know what? I’m extremely proud of myself for not losing it more than I did. The circumstances of this situation could not have been better for triggering my PTSD if I’d picked them myself and went beyond anything in my most vivid nightmares. If the events had been described an my opinion as to my probable reaction sought, I’d have predicted screaming, yelling, throwing things and behavior likely to get you sedated and put into a padded room. Instead, I had a fairly understandable response.

Or, well, to me understandable. I don’t think the sighted medical staff had that perspective. I’m concerned about what my medical chart now says. I’m looking at surgery in the next month and the thought is… not pleasant.

A Tale of Two Extremes

It was the best of times. It was the worst of times. Or, well, at least a striking dichotomization of the medical profession.

In September 2011 to deal with the ongoing saga of my tracheal stenosis is, I had minor surgery. A procedure with which I am familiar, I still somehow experienced a vast amount of related stress. In fact, a surprising resurgence of my PTSD caused me to rethink a prior conclusion that it’s under control. Then we had a power outage that pushed the procedure date back five days, so by the time the event arrived, I was a bit overwhelmed.

The first speed bump in the day came when I was told the gastroenterology folks concluded they needed to do a procedure on a different day to assess how my stomach might be contributing to my stenosis, potentially requiring some sedation. Overwhelmed as I was, life became entirely black and white where probably meant would and since anything between fully alert and fully knocked out is terrifying for me, the thought of the whole thing unglued me.

There are some things you might not consider unless you’ve been a blind person in multiple medical situations. Typically, medical professionals do not know how to keep you informed of events around you. Extreme amounts of focus to track events from the data you can gather help, but any kind of sedation destroys essential concentration and memory leaving you wondering what’s happening as you fade in and out. In case it’s not obvious, that kind of disorientation plays badly with PTSD and is why I either have no drugs or get totally knocked out. You also cannot be certain of privacy, who has entered your designated space, or where your nurse went. Therefore, when I was told about the GI decision, I couldn’t curl up into a Miserable Ball of Jen. With hindsight, I know that was for the best, but at the time I didn’t have such clarity.

Then the pendulum swung to the opposite apex of it’s arc as I went into the O.R. Unlike other times, I ditched stoicism and made my mental state clear. Everyone, and the room was populated with people I knew, was great. They did two things exactly right: casually kept me aware of what they were doing and engaged in distracting conversation. It was fine. I was fine. Never thought I’d experience that.

Waking in recovery, I needed oxygen. Without a nasal airway, a mask is the only option. It’s also the most upsetting medical thing I can imagine. But, wait, the Anesthesiology Nurse had a flash of brilliance when she cut a whole in a Styrofoam cup and I used that like a funnel to direct the oxygen at my face. Personally, I’m nominating her for sainthood.

Soon, though, I was smacked down to earth as I listened to the plight of my neighbor. As he came to consciousness, a breathing treatment was being administered. Unable to clearly speak, he still had questions. As someone who wakes up with a few of her own, I could empathize with his situation. I guess Recovery Nurse couldn’t because she politely then not so politely ordered him not to speak. There was no effort made to communicate in another way — no pen and paper offered, no yes and no questions asked, and no reassuring words to explain how his surgery went. Nothing.

From experience, I know how to gesture for pen and paper. I also (thankfully) can write without looking. In his shoes, I could have gotten what I needed to feel safe. Most people do not have my vast experience or coherence upon regaining consciousness. In this man’s Johnny, I would have been utterly petrified.

I’m starting to wonder if my experiences with the institution of medicine as a blind person is simply the result of a continuation of cluelessness. It’s not so much that they know what to do with non-disabled folks, but fall short when it comes to blind people. They just don’t know what to do with anyone.

The notable exception Is obviously the Pulmonology folks and Anesthesia Saint who apparently were given empathy and clue shots along with their new employee orientation.

Believe Maybe

A couple of weeks ago, I read Frank Deford’s “An American Summer” which tells the story of Christy, a fourteen-year-old boy who moves to Baltimore the summer of 1954. Almost immediately he meets Cathryn, a twenty-three-year-old who contracted polio six years ago and now lives in an iron lung. It is an unlikely connection that leads to an extraordinary relationship.

At one point, Cathryn is trying to convince Christy to do something he doesn’t believe is possible. She asks, “Can you believe maybe?” The distinction she makes between what we believe and what we believe maybe is effort. If I believe maybe there’s a God, then I still have a question to answer and thus work to do. Believing there is a God pretty much settles the matter.

I have been struggling with the concept of hope for quite some time. It first became an issue when I realized hoping I’d get healthy was causing me to live for tomorrow and not enjoy today. Then hope got all tangled up with the lack of dating in my life. People kept telling me that if I didn’t have hope that I’d meet someone, then I never would. I argued hoping for something that was statistically unlikely was the road to insanity. After that, my life began to completely come apart at the seams and I was devoid of hope that it would get better.

Our hearts are designated the home of our emotions. Over the past four years, I’ve learned much about following mine and so far it hasn’t caused me to do something I regret. In fact, my regrets tend to stem from the times when I don’t or where circumstances won’t allow me to listen to what it says.

My heart was devoid of hope. It contained wishes, dreams and desires without expectation to tether them to reality. I think hearts learn, shaped by the negative and positive re-enforcement of life experience. My heart was taught not to hope because nothing good ever came from it and many let downs happened. What has hope done for me lately? Caused oceans of tears.

So, I’m done with the idea of hope for now. We’re on a relationship break.

in its place, I’m entertaining the idea of believing maybe. It seems far more suited to me for it allows acknowledgment of things that feel unlikely while not summarily dismissing the possibility entirely. It allows for effort, but it doesn’t have the black hole effect of trying and trying and trying and then watching all your trying vanish into some unreachable place with nothing to show for it. Instead, the trying is tempered by knowing it might be for naught or it might work.

When I think, “I believe maybe this mess my life has become can be fixed,” I do not hear from my heart, “Bullshit.” I hear an echoing “Maybe?”

Lackadaisical Me?

If you are doing therapy “right,” the work of it doesn’t solely happen in the fifty minutes you sit in an armchair and spill your guts. To encourage forward momentum, some practitioners assign homework. Mine has not taken this step, yet I seem to be an entity that once in motion continues.

The reason I sought out a professional was my utter unhappiness with my life, specifically the lack of emotional intimacy, the absence of a collection of people who support me through the rough patches and resilience within myself to make it through hard times. I felt alone, drained and completely unable to figure out how to fix it. I lay the blame for the first to on the doorstep of a society that perpetuates untrue beliefs about disability that form the burier between me and other people. I sought a professional to help me decide if I had to accept that or if I could change it. Somehow. I wasn’t optimistic.

Slightly over two weeks ago, I had a painful conversation with a friend that resulted in a mutual decision to be less in each other’s lives. It left me with one local friend who I can count upon no matter what. I thought I’d be crushed by this fact, but I’ve been oddly curious. I want to know what happens next.

It also appears to be contributing to my growing feeling that I must clear out my life in order to move forward. Anything that isn’t working is vulnerable to being eighty-sixed from my universe. And when I follow that urge, I feel good about the consequences.

At least the immediate consequences. I have serious concerns that I will resolve what I need to in therapy and look up to find my life is gone making me more alone and isolated.

But if therapy works, won’t I have replaced the things that aren’t serving me well with things that are? This clearing of the decks is a way to make the space and free up the energy to build something better, stronger and fulfilling, right? Right?

The weirdest thing has happened. I no longer can even write a sentence about all this that contemplates failure. “When trying to build something better fails” literally feels like a lie. I don’t think it’s a healthy, optimistic perspective so much as faith in a non-disabled, never-treated-a-disabled-person therapist I’ve found. That’s just unfathomable. And possibly a very bad idea. Oh well.

And that’s even stranger. I actually don’t care if I’m making a mistake because it doesn’t feel like a mistake. It feels like I’m a combination of an adventurer and mad scientist. “Let’s see the consequences of these actions and what adventures they bring.”

What is going on with me? Anyone?

A Hostile Letter to the Non-Disabled

Dear Temporarily Able Bodied person,

 

I have recently gotten in touch with my anger toward you. It isn’t enough that you feel sorry for me. And it isn’t enough that you assume my incompetence. It’s also not enough that you expect me to be gracious and grateful and polite no matter what you say or do. It’s even not enough that you consider my fate worse than death. I could live with all that if necessary. Unfortunately, you seem to insist upon engaging in beliefs and perpetuating a society that literally keeps me from what I want. You, in the form of this society, even taught me that it is what I should want.

This world you’ve created teaches little girls to want families and encourages grown ups to find their life partner. At the same time, you school everyone in the fact that I’m helpless, dependent and pitiable. I should want home and hearth. I should just be fine without ever actually getting it.

When it comes to accommodations like accessible formats, audible crosswalks, and Braille on elevators, I can at least comprehend the obstacle created by having to take that extra step, to make the effort. You need to think that someone blind might want to read the menu, cross a street, or go to the eighth floor of a building and do something about it. The additional thought and exertion necessary is, well, work.

What effort or energy does it take to stop feeling sorry for me? To cease expecting my politeness in the face of insult? To desist in assuming I’m not competent? There’s no effort. It’s not a Herculean task. It’s a simple act of not….

Instead, these negative beliefs become the armor you use to protect yourself from the distress of my existence making it easier to feel pity rather than trying to understand, to offer supposed compliments in place of questioning the underlying insulting assumptions and to dismiss me as a substitute for perceiving my value. It’s more comfortable when you don’t actually perceive me as a person. My personhood comes entirely too close to you having to consider what your life would be like if you became me. Mustn’t contemplate that possibility.

So, to make your life all comfy, safe, and easy, you keep me from what I want. You make me an undesirable mate and nothing I say or do can in fact remove that stigma from myself. I have Hester Prin’s scarlet letter tattooed on my forehead only nothing I did put it there and nothing I do can remove it.

My anger at you knows no bounds. I’d scream, but I’d become hoarse long before I had even begun to express my fury. Becoming a hermit would work except for the fact that modern society makes us all interdependent – a fact you conveniently forget. I only wish I could morph my personality into one that would welcome your pity, low expectations, and devaluation with gratitude because at least then it wouldn’t add to my misery. Instead, I get to be full of rage in a way beyond my ability to express and beyond my ability to change.

Ironically, frustratingly and ridiculously, the fixing of it is left to you who could care less that your unthinking assumptions deny not only me but an entire class of people something you proclaim necessary for happiness. I didn’t choose disability to be a part of my life, but I did do everything in my power to make my life work. What, exactly, have you done except get in my way?

 

Respectfully,

Jen

Brutal Honesty

Sometimes twelve days on a lake with your family and guide dog who suddenly acquired gills is exactly what you need to refocus. I left warn out from Pride and wondering how I should change my life. without consciously even thinking about it, I came home knowing what to do. My subconscious is so smart.

I need to come clean about why this blog has been so silent. It began as a series of infections, then the habit of not writing took over, or so I thought. In actuality, I was avoiding emotional “stuff.”

Writing this blog with the frank honesty I want means digging in my feelings and uncovering what is underneath. Exposing buried emotional issues to the light of day can be hard and is definitely always intense. Since I was avoiding anything not immediately obvious on the surface, I steered clear of a writing process that would force me to examine things. When I eventually realized this fact, I made a conscious choice to continue not writing. My avoidance was in fact a smart decision on the part of my subconscious.

The emotional issues are still there, but I have unearthed them, cleaned them off, sorted them into piles and assembled the fragments into a picture.

There is a lack of emotional intimacy in my life that doesn’t work for me. At all. I can accept many of the ways my life is directly effected by disability – unemployed, limited income, lack of access to information and even having to ask for help. As I’ve mentioned before, I have a far harder time with the ways disability indirectly impacts my life based on how the world reacts – fewer friends, limited dating, people’s ignorant behavior and lack of respect. They all boil down to lack of emotional intimacy.

If you think about it, the direct consequences of my disabilities are things I can figure out, like fining meaningful things to do that take the place of paid work. How do you change the amount of emotional intimacy you need? And how do you increase the amount in your life when you aren’t the cause of the problem?

I used to think I needed to change my behavior or attitude or mannerisms or deodorant or something. At least in this area, I swallowed the idea thatDisability is the responsibility of the disabled

I was required to do whatever was necessary to make others comfortable and that would make it all better. I had to crack the jokes, not get angry about being treated as less than, educate, explain and accept with a smile whatever I had to. In this way, I would make others comfortable with me and they would want to be in my life. In other words, if I was nice enough, things would change. And, if they didn’t improve, I was obviously not being nice enough. My effort and attitude would fix everything.

Um, no. I have come to realize that how others react to my disabilities is not based on something I did. It’s about them. My only responsibility is to behave like a civil adult using the same measurements non-disabled people apply to themselves. Who, after all, would expect a non-disabled person to smile sweetly and thank the cashier who just handed your change to the person with you?

Still, I was left with a big problem: how do I deal with my need for emotional intimacy not being met? Good question. No answers.

While working my way through all of this, I couldn’t write this blog without making my abject misery worse. Now I can at least write about it. Progress.