An Inconvenient Truth

  • Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.


This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

f Against Disablism Day 2014

What’s the Opposite of Pity?

I’ve been reading about race relations in 1962 Atlanta, Georgia, and repeatedly hatred has been the focus.  In fact, when it comes to issues of diversity based on race, gender, gender identity, sexual orientation, ethnicity and religion, hatred is one of the dominant emotions.  (When the prejudice manifests itself in an act, we call it a “hate crime.”)  The way bigotry toward these marginalized groups is combated involves fostering states opposite to hatred, such as kindness, compassion and understanding.

On the other hand, hatred is not an emotion I associate with the prejudice I experience as a person with a disability.  Pity is the primary culprit and unlike hatred, it does not have opposites that come to mind which can be promoted within the hearts of people without disabilities.

To make sure we are all on the same page, let’s open a dictionary.  Pity is defined as “sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy.”  Among its synonyms are words like compassion and commiseration.  While perhaps not a pleasant emotional state, pity is not, unlike hatred, given the stamp of social sanction.  An act springing from pity is considered an act of mercy, making it very hard to quash.

Looking at the antonyms of pity, we discover three broad categories.  There are the good words, the bad words and the neutral ones.  Opposites to pity with a negative bent are cruelty, harshness, hatred, meanness, mercilessness, disfavor, malevolence, unkindness, and disdain.  Slightly more palatable are disinterest and detachment.  The positives are cheer, happiness, joy, advantage, blessing, and good fortune.

Think about this for a moment: To combat racism and sexism, we encourage states opposite to hatred.  In the case of disablism, to promote the opposite of pity would either involve fostering something like cruelty or hatred, working toward indifference, or trying to somehow convince people that disability is good fortune.  That is a lousy, impossible set of options.

It’s far clearer to say, “Don’t hate someone.  Feel compassion, kindness and love,” than to say, “Don’t pity someone.  Feel…”  What?  Indifference? Cruelty?  I suppose “joy” isn’t a bad idea, except I can’t conceive of how you get a nondisabled person to go from viewing disability as negative to not simply tolerable but joyful?!

Dissecting all these linguistics has given me some new insight into why disablism is so intractable.  In a world where pity is a virtue, how do you eliminate it?  When its opposites range from the good to the bad, what ultimately becomes your goal?  When even the positive states are going to be impossible to sell, in the end what do you have left?

Someone suggested to me that the opposite of pity is confidence.  “I don’t pity you.  I believe in you.”  Faith in my ability as a person with a disability to do what needs to be done is definitely more of a place to start than I had before the suggestion was made.  I’m still not certain, though,  how you get people from the condoned “You poor thing” to the place where they view disability as something other than tragedy.


At FabTherapists’s recommendation, I have joined group therapy. After two sessions, the jury is still out as to whether or not it will be beneficial. One goal is for me to intentionally work on how I interact with non-disabled people in an environment where I can get feedback. In other words, if another group member offered me help I didn’t need, I could actually question the person about the impact of my response and their initial motivation.

Last week, someone discussed how their job was making them unhappy and stressed. As they were leaving work ruminating on this, they walked past a vet who was a double amputee and “it put my stuff into perspective.”

I hate when people do this and had a rather intense response. It did not go well and the therapist said, “That pushed your buttons. Next week how about you come back and explain why.” I decided that a blog entry would be an excellent way to clarify my thinking.

My first objection is that life stressors should not be compared. Each of us is a unique individual possessing certain personality traits, backgrounds, coping abilities, resources and so forth. How we each deal with life stressors should be viewed separately in the context of who and what we are. Invalidating your own life stressors based on your perception of others’ circumstances being worse minimizes and invalidates what might be a truly distressing situation for you. It’s not fair to do that to yourself.

My second objection has to do with the way disability is being viewed. To make a comparison, an impression of what the disabled person’s life must be like has to be formed. What is that impression based upon?

All the societal beliefs about disability that we are taught come into play to create a picture of what that person’s life must be like. Often, such knowledge is based on inaccurate information, distorted images portrayed by the media, stereotypes and misconceptions. It eventually boils down to seeing the life of the person with a disability as being les happy, more burdened, less rewarding and more stressful. The person with a disability is suddenly relegated to a place of less, lacking and unhopeful.

When I have questioned those who view my life as “hard,” I hear about how it must be awful not to be able to see x, y and z, how I can’t enjoy a, b, or c, and how I won’t ever be able to do j, k or l. I *never* hear about how my life must be hard because I live in a world that sees me as less, has distorted ideas about blindness, treats me as a child and refuses to perceive my value. Which do you think is actually what I would label the “hard” part of my life?

And that’s the reason why what my fellow group member said bothered me to such a degree. They just diminished the double amputee vet to a “hard” life based on physical limits. He wasn’t a father, brother, or lover. He was someone whose life must be so stressful that it makes one grateful for the paltry stress they have. Personhood was stripped away. Value was ignored.

It isn’t that much of a leap to go from “They just reduced that man to nothing” to “Do they see me as nothing?” I struggle every day to find ways to be valued for who I am, to be connected by love and affection to other people and to live my life authentically. The last thing I want is for my life to be reduced to someone’s means to feel better about their own existence. *I* just got lost in that equation and used in the process.

To answer my group therapist’s inevitable question, “How does that make you feel?”

Devalued. Invisible. Used. Angry. Frustrated. Resigned. Tired. Hopeless. Sad.

Worthless. Scared.

Responsibility Teflon

I know we’ve all met that person – the one who can somehow avoid responsibility for *anything.* It is as if they’ve been sheathed in teflon and nothing will adhere to it. Ever.

The most drastic cases involve those who frame their lives in terms of things “done to them” that have resulted in bad outcomes. (Ever notice victim mentality is only present when it comes to bad outcomes?) More insidious cases exist in which individuals effortlessly float through life with nothing ever being their fault. They’re just “following their hearts” or “honoring their feelings” or “not engaging in negative self-doubt” or “practicing self-compassion.” In and of themselves, each isn’t a bad thing when done in moderation. Some, however, have raised their use to an art form. In the process, they acquire Responsibility Teflon.

I believe that perceiving me as amazing allows non-disabled people to don this same Responsibility Teflon. I’ve previously mentioned three ways non-disabled people conclude I am amazing – expecting less of me because of my disability, misunderstanding what it would be like if they walked in my shoes and lauding me for overcoming obstacles. Each is predicated on the idea that the “problem” is contained within me. She doesn’t have functional eyes, so I should expect less. If I didn’t have functional eyes like her, then I couldn’t do that. She doesn’t have functional eyes which would make that activity harder. It’s all about my biological difference.

The interesting part is that by making it all about my difference, non-disabled people have framed the situation in terms of my body, my abilities, my interactions, my defects. When it is all about me, Responsibility Teflon morphs into existence.

A crucial factor, how our society functions, is being left out of the equation. My difference only becomes a problem when my world doesn’t take it into account. Imagine if I lived in a world where my difference was accommodated by all information being conveyed visually, auditorially and tactilely. Would I be so amazing in that environment? Not really. I’d be simply another person going about her business.

I’m certain someone is now thinking, “Yeah, and you would also not be amazing if you could just see.” Following that line of argument, if all people were the same color, racism would disappear. If all people were of the same gender, sexism would vanish — along with our species’ ability to exist. Disability is a fact of human variation. Only when our society places meaning on human variation do we have things like sexism, racism and disability as individual defect.

When a non-disabled person observes me crossing a street, they could think I’m amazing for being able to do that. They could also think that they participate in a world that doesn’t take my need for auditory street signals into account. In the former, while they feel all warm and fuzzy for praising me, they are putting on Responsibility Teflon. In the latter, they are skating perilously close to assuming some accountability for the world they inhabit. You know, the same one I have to function in?

Magic Words

About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant — seemed to increase my social connections or generate more emotional intimacy in my life.

Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He’s made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I’m disabled, he not only believes me but understands why it happens. That’s valuable in a way words cannot express.

We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from “Blind, incapable, weird looking person” to “Smart, funny, intelligent woman.” His argument is that people meet someone like me and suddenly don’t know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am.

I believe words have power. They don’t have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don’t take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process.

Okay, there is something that has the power to derail things – shock. It’s why some women with disabilities dress provocatively — to shock potential dates out of the “not sexual” mindset.

What would I need to do in order to shock people? Would that be in line with my personality?

“Yes, I’m blind. Be careful. You don’t want that to cause you to underestimate me. That would be a bad idea.” The last sentence would be delivered with a slow smile. Not even sure I’m capable of a slow smile on purpose let alone uttering those words.

If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It’s not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it.

Besides, if I noticeably aid people in coping with their discomfort, I’ve set a precedent. “You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too.” Do I want to establish such a pattern?

Yet, inaction will not change anything. Principles are great, but they don’t make you feel loved and valued.

Besides, women have needs. And hormones. and needs that go beyond hormones.

Running With Scissors

When I throw my yoga bag over my shoulder, my guide dog, Camille, runs over and assumes harness position. Knowing we are headed to a place of endless pets and belly rubs, her tail wags with greater than average enthusiasm. We call this a learned behavior, concluding Camille is smart for predicting what will happen.

A child carefully walks across their kindergarten classroom carrying a pair of scissors in the prescribed way. They have learned – probably because numerous adults have repeatedly scolded, coached and cajoled – that it is unsafe to run with scissors or to hold them the wrong way. We also consider this admirable behavior.

I walk into my local grocery store betting myself how long it will take to find someone to assist me. Through experience, I have learned that help will not materialize quickly or easily.

When a child learns safety procedures or a dog begins to accurately predict a routine, we call that good. When I anticipate an activity usually difficult will probably again be hard, I am making assumptions, thinking negatively and not giving people a chance.

Is there truly a difference between the three things?

When adult humans take the totality of their experience and apply it to a new similar event to forecast what will happen, we call it optimism if the predictions are good, and carrying around baggage when they are negative. If the prophecies are routinely downbeat, we are further labeled pessimists. Because we are creatures capable of reason, we try to overcome our negativity – to set down the baggage or remember that a familiar situation might turn out differently. In other words, set aside the statistically significant in favor of believing things will be better this time around. (This more positive attitude has been proven over and over to be healthier for us on a multitude of psychological and physical levels.)

At Rolling Around In My Head, Dave Hingsburger wrote an entry about <a href=””>his own personal baggage.</a> He articulates the fine line between the benefit of predicting based on past events and the ways baggage can interfere with our experience of a situation. To summarize, just because 95% of the time a situation unfolds in a specific way it does not mean you aren’t currently in the 5% of the time version. Behaving like it is the 95% of the time event when it is the 5% occurrence is suboptimal.

I began thinking about how the copious amounts of baggage people with disabilities carry is often used against us becoming a tool to minimize, silence and dismiss.

People with disabilities acquire their baggage by living. One morning, I did not impetuously decide knitting in public would elicit excessive praise. Instead, it happened repeatedly, creating my voluminous luggage over time as I interacted with the world. Based on that, I might leave the knitting at home to avoid unwanted attention. Suddenly, I’m judged to be carrying unreasonable and unnecessary baggage, impacting my decisions negatively. (To be clear, even I think leaving the knitting at home is absurd, but not because of the reasons given. I think letting other’s ignorance limit my actions is just that…. limiting.)

This baggage can in fact provide a benefit in the form of lessons about how to approach a situation. Last time I asked a bus driver to drop me off at a particular stop and didn’t pay close attention, problems developed. That part of my baggage helps me remember to remind drivers, even if I might be perceived as annoying. The label “nice” is not worth it if I end up in an unsafe situation.

Sharing this acquired knowledge with others often backfires. I’m not seen as learning through experience and being prudent; I am perceived as holding one person responsible for another’s actions. “How do you know this driver will forget about your stop?” In fact, I don’t know. I just know that if they do forget, it will suck to be me.

I do agree with Dave that determining if you are in the 95% situation or the 5% one and not treating one like the other is key. Therefore, if a driver is announcing each and every stop, I don’t offer any reminders of my request.

The thing that bothers me the most, and the thing I cannot prove through logic or reason, is the fact that my same actions done by a non-disabled person would be perceived differently. I have baggage. They’re being smart.

Leveling such value judgments at the same behavior done by different people is the first step in employing social control. It isn’t far from “Why are you behaving in such a negative manner?” to “Nobody likes a negative person,” to “Your bad attitude is why nobody will be friends with you.”

Do I sometimes behave badly? Of course. Is it sometimes because I used my experience as a person with a disability (baggage) and judge things badly? Definitely. How does this make me any different from a person without a disability who uses their experience gained over time? It doesn’t. Why, then, is mine baggage and theirs learning? I’m just running with scissors, cutting myself and using more care the next time around.

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?




With Water, Rudder and Pilot

It’s strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it’s all different.

This happened a couple of days after I wrote

The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me.

Actually, I’ve come to realize it’s not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don’t know how much energy I will have each day, I don’t know what barriers to access I will encounter, and I don’t know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that’s one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown.

Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It’s just not likely and people tend to count upon that and learn to cope when it’s not the case.

I cannot move through the world playing the odds that it will be smooth sailing because it’s so often not. I’m more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness.

I guess it’s the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge.

My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier.

I’ve been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn’t that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn’t I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there’s a safety net?