Exclusion: The abled-privilege knapsack

Shutting down "the privilege Olympics"  should not be code for "screw the disabled"

You too are wearing an invisible knapsack. 

In 1988, Peggy McIntosh explained white privilege in terms of an invisible knapsack filled with unearned benefits and assets that white people carry with them almost entirely regardless of class, economic status, citizenship or other conditions.

It's a good analogy. I am now much more aware of my knapsack of white privilege and I can observe the effects of its contents on a daily basis. 

I have never seen a similar analogy used to describe abled privilege, but it is time someone did. In the last few years the necessity of acknowledging abled privilege has been shoved in my face ever more frequently. Even in social justice circles where such things are typically read, people with disabilities are continually being marginalized and silenced.

Creative Commons image by Woodleywonderworks

Creative Commons image by Woodleywonderworks

It is worth noting from the beginning that people carrying the white-privilege knapsack but not the abled-privilege knapsack or visa versa might well enjoy some of the benefits of the one they do hold, but there are assets in both of these knapsacks that are very difficult to enjoy if you don't have the corresponding assets in the other knapsack.

So, as a white woman brought up to be aware of white privilege, I can pick out instances of white privilege that I enjoy. These are not so much unearned privileges as they are privileges earned by every human but accorded only to those who are white--the privilege of driving or walking without a well-founded fear of being accosted by law enforcement for trivial or non-existant reasons or the privilege of relaxing into a social situation in which my race and culture is in the majority most of the time.

Having children who are not white has taught me even more about my own privilege and a few privileges I gave up by being part of a racially mixed family, such as losing the ability to shelter my children from the societal realities of racism and the very real dangers they face because of it. 

However, there are some assets in the white knapsack that I have pulled out broken or severely dented because of my disability. Unlike most white people, I am beset daily by the assumptions and prejudices of others, both unconscious and conscious. I rarely to through a day without being yelled at in public and someone pushes my "difference" in my face at every turn. 

I was once told explicitly that I was denied a job that I was qualified for because of my disability and I have wondered about the reasons behind many other rejections. I have faced social isolation, rejecting neighbors and hostile school teachers as well as accusations of stealing in stores.

I do not claim that it is the same as what people of color face. In fact, I know it is not the same. But people of color who are not disabled do also enjoy privileges that I cannot.

Please note that this inventory has very little to do with the actual health problems people with disabilities may have. It has everything to do with society’s reaction to and ultimate rejection of us. The benefits of privilege represent the minimum of respect earned by every human being from birth and this is true of abled privilege as well. It is our right to be treated with respect and dignity, to have opportunities and to be judged by our actions rather than by attributes we cannot choose.

So, here is an inventory of the abled-privilege knapsack with some prompts drawn from McIntosh's essay and the writings of Emestine Hayes.

Creative Commons image by Honza Soukup

Creative Commons image by Honza Soukup

If you are temporarily abled, you are wearing an invisible knapsack and in it you will find:

  • You can, if you wish, arrange to be in the company of people who view your physical body and neurological setup as normal and acceptable pretty much all the time.

  • You can turn on the television or open to the front page of the paper or open a random Google search and see people of your shape or appearance widely represented.

  • You can easily buy posters, postcards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people that look vaguely like you.

  • Your body shape is reflected in media, movies, books, magazines, online and in most people's imagination as good and capable, even if sometimes not perfect. As a result, while you may have insecurities or anxieties about your looks, they are not a barrier to social interaction.

  • Beauty, handsomeness, masculinity and femininity are personified by people of your general appearance and body shape. 

  • You can be fairly sure of having your voice heard in a group, even if most of the group has different abilities, body shape and speech from yours.

  • Authority most often rests in people who look like, speak like and perceive the world like you.

  • You do not need to make an in-depth study of the social habits and customary communication methods of your immediate neighbors in order to avoid daily conflicts of misunderstanding and unintended offense. 

  • You can criticize the government and talk about how difficult it is to access basic services without being seen as a moocher, a whiner, ungrateful or a burden. 

  • You can go home from most meetings of organizations you belong to and social gatherings you attend feeling somewhat tied in, rather than isolated, out-of-place, rejected, unwanted, unheard, barred at a distance, or dismissed.

  • You can attire yourself, if you choose, in a way that most people in your community seeing you and hearing you speak will assume that you are capable, responsible and trustworthy until proven otherwise. If you happen to belong to a group where this is not always true, a community of people who do look and sound like you and where you would be respected and trusted does exist somewhere in the world. Even if you don't live there, the knowledge that such a community exists bolsters your courage and self-confidence and in most cases you could move to such a community if outside pressure became too intense.

  • People make eye-contact with you and you are able to make eye contact with them. People make small-talk with you and you are able to make small talk with them. This initial social contact often leads to social connections, builds bridges and defuses potential conflicts. 

  • While you may have been teased at school, your chances of suffering from extreme bullying or complete social isolation in childhood are dramatically reduced. Your chances of suffering from PTSD and other acquired barriers to communication with others are significantly reduced.

  • Teachers at schools and universities almost always look like, speak like and perceive the world like you do.

  • The vast majority of students and teachers all through the education system sense the world, communicate and access textual materials in the same way that you do.

  • The entire education system is custom made and designed with scientific precision to benefit your type of brain and calibrated to meet the needs of your particular senses.

  • The language and writing system of your culture was designed by and for people who communicate and perceive language in the same ways that you do.

  • Public buildings, including schools, were built using models of your body, to make them comfortable and easily accessible to you.

  • You have probably not been called a burden. You were not called a burden to your school while you pursued your education.

  • If you are denied employment for which you are qualified, you can be pretty sure it isn't because of an attribute you did not choose and which does not affect your job performance.

  • If you are given an award, you can be pretty sure it is something you deserved rather than a publicity stunt by the patron of the award. 

  • You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of disability hiring incentives.

  • If your day, week, or year is going badly, you need not ask of each negative episode or situation whether it is disability related.

  • You can choose public accommodations without fearing that you cannot enter or will be treated with disrespect in the places you have chosen.

  • When you plan social engagements, your way of getting to and into the venue is the same as that of most of your friends and you don't need to strategize, beg for assistance from friends or go to extreme expense to get to or enter the social venues your peers take for granted. 

  • You can always ensure that your living, schooling, work and or social environment will be among people you can communicate with and among which you will be considered "normal" if you desire.

  • You can always find a living, schooling, work or social venue that you can physically access and fully participate in locally if you desire. 

  • If you should need to move, you can be pretty sure of renting or purchasing housing which you can afford and which you can personally enter and use fully and from which you can get to schools and places of employment.

  • You can be pretty sure that your neighbors in such a location will view you as a full adult, if you are over 18 years old. .

  • You can go shopping alone most of the time, pretty well assured that you will be able to access merchandise and that a reasonable portion of it will fit you and be usable by you.

  • Whether you use checks, credit cards or cash, you can count on not being infantilized, shamed or dismissed by cashiers and other people you interact with in public..

  • You can arrange to protect yourself from harm most of the time.

  • You are twenty percent more likely to finish high school than a person with a disability who has similar intelligence. You are twice as likely to finish college.

  • You are at least three times as likely to have any sort of job than a person with a disability and much more likely to have a job that is of some interest to you, that provides some social prestige, that pays your bills and in which you can progress for a career.

  • You are half as likely to be hungry as a disabled person. 

  • You are a third as likely to be a victim of sexual assault and half as likely to be a victim of violent crime as a person with a disability from a similar social or economic group and geographical area. You are half as likely to be a victim of domestic violence.

  • You are twice as likely to have family and friends nearby or who you can contact in an emergency. You are likely to have a circle of friends to enjoy leisure time with and to network with for mutual benefit.

  • You are twice as likely to have a long-term relationship. You are many times more likely to have children.

  • You can swear or dress in second-hand clothes or not answer letters without having people automatically assume these choices indicate low intelligence, shaky mental state or poverty.

  • You can be temporarily out of work or sick without being called a burden or assumed to be unemployable.

  • You can do well in a challenging situation without being called "an inspiration" or used to further the religious or social agendas of others without your consent.

  • With education and credentials, you could become an an acknowledged expert on people who look, speak and perceive the world differently from you and you would not be asked why you did not choose to study your own group.

I am sure I have missed some. It's a large knapsack after all. 

This is one of those posts that will inevitably draw flack. It isn't that I don't care. I have simply decided that the amount of verbal shrapnel I'm getting in "progressive" circles these days for being an uppity person with a disability has reached a point where the potential flack from this post won't be a significant change. 

So let me lay it out there. I am sick of the dismissal of people with disabilities in activist circles. I am sick of being told, "you are white so you need to practice being silent for a while," when I have been silenced, dismissed and sidelined my entire life.

I am sick to exhaustion of being excluded, rejected and sidelined in supposedly progressive groups because I didn't take an insult or bullying in silence and answered back withotu profanity, without insults but nonetheless with unpalatable truth. . 

I get what people of color, indigenous people, speakers of languages other than English and people living in absolute poverty are talking about when it comes to wanting those with privilege to stop yammering about their perspective on society, their perspective on history, their perspective on underrepresented people and their perspective on social justice long enough to listen to the perspectives of those less heard.

I get it because while I have the privileges in the white-privilege knapsack, the English-speaker's knapsack and the resources-beyond-bare-survival knapsack, these are usually not enough to be heard without abled privilege. 

This is not "the Privilege Olympics." It is not a matter of whose usurped privilege is worse. It is almost always so different that it cannot be compared. Still mentioning "the Privilege Olympics" or equivalent is routinely used to dismiss and marginalize people with disabilities in activist circles.

We have huge, life-threatening threats to people of color. The crises for people of color are so extreme in some places that there can be no other priorities or even distractions.

Many of us, myself included, have agreed to this, stepped back and ceded precedence because while there are life-threatening and devastating issues for people with disabilities as well, the numbers seem to indicate that our problems are at least statistically less severe. We activists with disabilities have often felt that we can wait a little while and trust that our progressive activist communities would do their best to include us in the meantime. 

But that trust has been misplaced. 

Not once but again and again. Not only do people with disabilities encounter a lot of social exclusion, bullying and discrimination in society at large, we encounter much the same atmosphere inside social justice organizations and groups claiming to be against bigotry and hate. 

My experiences and the experiences of those I have spoken with are clear. People with disabilities are welcome in these groups primarily as mascots or symbols. We are not respected for in our fields of expertise and study. We are often silenced and rarely given a voice. 

I've been told that my voice and experience are not welcome in progressive and social justice groups on multiple occasions. Usually this was not specifically because of my disability but rather because of my race. I was told that as a white person I am privileged and my role is not to speak. As a blind person, however, given that no other people with disabilities were present or given a voice, I felt that our voice was needed. 

I have been rejected quickly from several groups when my politely phrased protestations against being silenced were regarded as going against group authority. I never used profanity or insults against others in my responses. I did not talk over others but only refused to be entirely silent.

For that reason, this inventory of the abled-privilege backpack is necessary. I welcome any additions that others may find while rummaging through it. 

Do the blind understand what the sighted see?

Being an out-outspoken visually impaired blogger and author has one annoying side effect. I get asked the darnedest questions. 

The latest one was this zinger, "How do blind people know they are blind?" Taken at face value it's ridiculous and my first inclination was to give it a flippant, humorous reply that would put the assumption that blind people are stupid in it's place. But the inquirer followed up with a bit of explanation and I saw a deeper question in the botched phrasing.

How do little blind children know they are different from sighted children? How do blind people know about what sighted people experience through sight? Those aren’t such silly questions, so I let them have it.

When I was a baby and they found out that I was almost entirely blind, my parents decided that they would act like it wasn’t true or at the very least didn’t matter. We lived on 20 acres in remote, rural mountains in Oregon. We built our own cabin, grew a lot of our own food and rode long distances to a small school on yellow buses that made it up the gravel road most of the year.

Creative Commons image by Neticola Sny

Creative Commons image by Neticola Sny

I had two rambunctious brothers and my dad was always building something. There were hand tools, boards and debris scattered all around the cabin and beyond that there were the woods and the rocky high prairie. Many days in our middle childhood, we spent the whole day outside and didn’t come back until evening. We’d eat miner’s lettuce and camus roots or sit down under a pastured cow and drink milk right out of the udder.

I don’t remember realizing that my eyes were different. It seems like it was a fact that was always there. I could see some but very little. I ran after my brothers. I was a loud, complaining child and I was always yelling, “Wait for me.” They didn’t. I learned to keep up.

I don’t know when or how but I discovered that if I picked up pebbles and threw them ahead of me, I could run faster and avoid most scrapes. There were irrigation ditches in the lower areas that my brothers would jump across and run on without slowing down. I threw my pebbles, listened for how far I had to throw before they stopped dropping into the bottom of the ditch and then I jumped too.

I was slower sometimes. But not on a bike. I could see enough to make out the basic contours of the road and our gravel road was so rarely frequented that a car came along once in a few hours. And when one did, my brothers and I would not only scramble to the side but well off of the road, skittish as the deer.

So I had a bike, just like my brothers. One brother is two years older than me and one is four years younger. My older brother once rode his bike five miles to the tiny down of Summerville, population 250. I copied him the next day, insistent that he wouldn’t outdo me.

Then a few months later, I decided I would ride ten miles to the town of Imbler which was bigger. My brother laughed. But I got up in the morning and packed water and food. That was one of the first times I remember my mother showing any concern about what I did from a safety standpoint. She wasn’t entirely thrilled with the idea but didn’t seem to forbid it. My older brother jumped up from his place by the woodpile and grabbed his bike and rode off fast. I scrambled onto my bike and followed. He wasn’t going to beat me. We eventually agreed to cross the city-limits line together.

I wore huge thick, coke-bottle-bottom glasses to slightly improve my vision. Think of it this way: without the glasses I saw about five percent of what most people see. With them it was closer to eight or ten percent. My family obviously didn’t have much money and the glasses were worth an entire month’s income.

I lost them, of course. I hated the glasses for one thing. As a toddler I threw them away willfully. Later I lost them a couple of times because i put them down. The glasses were so heavy they carved red sores into my face. But by the time I was old enough to remember, I knew I had to have them and I didn’t resent them.

Whenever my family rode in a car, they were constantly pointing out deer, hawks and eagles as we drove along the country roads. I listened from the time I was a baby and there must have come a time when I realized that they were seeing things I wasn’t. I wanted to see those things too but there was never a moment when I asked to see.

Sometimes my mom tried to describe something like that to me, but I knew what a deer and an eagle looked like. I could see them up close in picture books. Of course, what I saw even there was indistinct and lacking in detail. I just didn’t know it.

I remember one conversation in the car in particular. My mother was talking about the new leaves on a tree with my older brother. I think they were discussing whether or not the leaves were healthy. This was at some small distance. I could see only fuzzy green blobs on the sides of the road where the trees were. I imagined that my family could see those blobs better. They could see their exact shapes and maybe some branches in them, like I could in a picture book. But I stopped my mom in the middle of the conversation and demanded that she not jump to conclusions about the health of the tree unless she examined it close up.

“You can’t possibly see the individual leaves, let alone what spots are on them,” I said.

There was silence for a moment. And then she told me somewhat sternly, somewhat in awe, that in fact she could. She said she saw each leaf, individually, etched against the background, each twig, each blade of grass. I thought about that for a long time afterwards. I couldn’t imagine. It seemed like it would hurt to have to absorb that much detail. The image i tried to imagine was so sharp it was painful.

I knew about blurry and sharp because I had the glasses. When I took my glasses off the world looked blurry. When I put them on the world looked sharp and clear and brand new. I was still seeing a world that was blurred beyond recognition for sighted people. If a sighted person suddenly saw what I see even with the best correction, it is unlikely they could walk even a few steps. It would be blurry, disorienting, distorted and lacking in all depth perception.

But to me, that was the best and clearest image I could imagine. I asked my parents how things could be clearer. They said they just are and that what I saw was actually still blurry.

I didn’t entirely believe them until I was nine years old. That was the year I first tried on contact lenses. Because they were closer to my retina the contact lenses could correct my vision a little bit more. I will never forget the moment I first blinked my eyes open in a doctor’s office and looked at the opposite wall. I had been to that office countless times during my childhood. My parents may not have wanted to pay much attention to my vision impairment, but they didn’t neglect my care.

I knew that wall all too well. It was green. Or it was supposed to be green, a kind of muddy, unpleasant green. But when I blinked my eyes open with the contact lenses in I saw for the first time that the green wall was actually a much brighter green. The muddy impression I got was caused by the fact that there were thin orange and purple stripes on the wallpaper. I had always seen it as one muddy color.

In that moment, I knew my mom was telling the truth.

Therefore, if there was ever one single moment when I realized how different my vision was all at once it was probably then. I got the contact lenses and could see a tiny bit better. Again the world seemed ultra crisp to me. Only going back to my old glasses at times made me realize that what I had thought was clear before had not been.

Creative Commons image by Mike Behnken

Creative Commons image by Mike Behnken

The older I got the more I realized how much other people could see that I couldn’t. They saw the blackboard at school and every detail on it. They saw details on people’s faces that allowed them to tell instantly which person was which, even if the people were the same height and gender and had about the same kind of hair. I could never see the details of faces and had a hard time understanding how people could recognize others so quickly and easily.

Later as an adult, I read about the special, neurological functions of the human brain, in which the exact specifications of human faces are prioritized so much that sighted people can tell minute differences not only individual to individual but in the same individual, the tiniest flicker of emotions or thoughts crossing a face.

I memorize who is who by painstakingly adding up what details I can get and cataloging them, like this: short, thin lady with the bouncy blond hair who has a tinkling laugh = Jane. Sighted people remember dozens of faces in that amount of time with their facial-recognition priority function. 

This isn’t just sight, it is specially enhanced sight made possible by the adaptations of our brains. Human touch and human voices are important to the brain, but there is nothing apparently with quite the power of eye contact. Looking into another person’s eyes is, according to science, profoundly important to humans. It supports social, psychological and neurological development.

Studies have documented the huge health problems experienced by babies in institutions, who do not receive enough human contact and no single, secure bond with a special caretaker. And one of the most important treatments for these problems is eye contact.

I have never known real eye contact, not the kind that imparts all those neurological benefits. My brain had to make do with the human touch and voice inputs, which can be enough if a child does grow up in a loving family. But not having known about eye contact from an early age, I did not behave “correctly” around sighted people. I didn’t look at people while they talked when I was a teenager. I would study my hands or stare off while listening.

No one really understood this or realized the difference. They just felt that I was rude and aloof. Those words were used a lot about me, though I was anything but aloof and desperately eager to please others. It was only when specialized teachers explained eye contact to me and trained me to try to aim my eyes at their eyes and pretend to make eye contact that things improved.

The exercise in faked eye contact is still exhausting for me because my eyes move erratically and it takes a lot of effort for me to get them to hold still and try to look like I am making eye contact. But like any other social courtesy it is worth doing, to show respect to the person I am talking to and to avoid conflicts.

Now after many years of study, I have a better idea of what normal sight is probably like. I have pressed my face close to video screens and watched expressions cross the faces of actors. I probably can’t see every detail, but I can have some idea of what other people’s expressions look like. I can see distant natural features and animals that I would otherwise not know in the same way--by looking close at photographs and using a magnifying glass. It isn’t the same of course. But there isn’t much else I feel the lack of.

I have experienced some amazingly beautiful sights and scenes in my life. Once as a young adult I had the opportunity to travel alone in Nepal. I went high up in the foothills of the Himalayas to a remote mountain-top village to deliver a letter from a Nepali friend to his wife and children.

I was still very good at navigating natural environments, camping out alone and all that, given that I grew up doing it. I slept outside the cabin of my friend’s family in my sleeping bag and in the morning I went out to the edge of a massive cliff to take in the sunrise and cook a cup of hot chocolate over my tiny alcohol-tab stove.

Before dawn the whole world was silver and blue. I could make out hazy ridge lines in front of me, jagged streaks of indigo against the silver, tapering down to the rose tinted mist above the plains of India to the south. To the north there were shining white peaks against an azure sky.

Then shivering streaks of gold, peach and pink began tracing out from the east like a painter’s brush bleeding into fabric. I watched in awe as the sun, emerged onto the horizon, like a jewel rising out of viscous honey. The light from it truly seemed to pour like slow liquid. Gold, rose and peach splashed over the ridges, turning the indigo lines to flame. The valleys and canyons were still dark and the mist that curled up out of them shown with color and light.

I am sure there are many details I missed. I missed the birds soaring in the canyon below me. I missed the leaves on the vines growing on the cliffs. I missed the detailed sparkling contours of the Himalayan peaks far to the north, that I could barely make out as white shining gods.

But what I saw was no less beautiful. And combined with what I heard and felt and tasted and smelled in that little village in a time and place in history when there were still little villages built with stone and branches with no electricity and no mail service… well, I experienced plenty.

I felt the rough grain of the wood under my hands, investigated the geology of the rocks, listened as the children taught me Nepali from their tattered school notebooks, ate the meager rice and lentils of the village, spiced with both sharp hunger and whatever the mothers put in it. And I never wanted for more.

I knew that I was visually impaired the way anyone knows their basic characteristics. You know your arms and legs and hair and senses. You learn your body, particularly if you live a physical and rugged life as a child. Later the tests of doctors told me exactly how different my eyes are. That is something no one could know without science and measurement. I had the good fortune of not knowing for the first several years of my life how the world would view me as different and lesser because of this minor physical difference.

Because my parents chose not to pay much attention to it, I gained an active, healthy body and great mobility skills and I lost a lot of early understanding of the social cues I was missing. It was a blessing and a curse. My mother now often regrets not paying more attention, not realizing how different the social experience of a blind person is, the lack of recognizing faces and expressions, the lack of eye contact.

And I agree that if I had the raising of a blind child, I would talk about that. I would train them in social courtesy and try to bring those key experiences in. But I would also let that child run wild too, as much as any child gets that these days.

I would never let understanding sight or what part of it was lost become a major topic or obsession. Because it is just one thing, one piece of life experience. And the others can and do make up for it more than society believes.