Tag Archives: Myths and Misconceptions

Half A Glass

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This is the speech I gave at the San Diego Pride Spirit of Stonewall Rally.

 

Half A Glass

Imagine in my hands I hold a gllass with a capacity of 16 ounces and it is currently holding 8 ounces. Let’s think about this gllass as my blindness.

Some people tell me I’m amazing for taking the bus, baking cookies or living by myself. The most mundane tasks become praiseworthy because a person with a disability did them. These people would say my imaginary glass is half full..

Then there are people who feel sorry for me. They say things like, “It mmust be so hard being blind” or “Your life would be so much better if you could see.” For them, this glass is half empty,

My question is this: Why can’t it just be half a glass? Disability is a fact, but society loads it with a lot of meaning and insists on foisting that meaning off on the person with the disability. Believe it or not, when I tell people it’s not amazing that a blind person can bake, that it’s just a skill, they argue with me. Argue.Heatedly.

Now let’s think of this imaginary glass as my bisexuality. We are going to pretend I’m that mythical creature – someone equally attracted to more than one gender for my entire life. Some would describe me as half straight. Others would describe me as half gay. My question is this: Why can’t I just be a glass of water? A person attracted to more than one gender?

Unfortunately, people tend to think of us in terms of partly gay and partly straight, as if we can divide ourselves into sections. Nowhere is this more obvious than in LGBT-serving organizations, where we can acknowledge our same gender attractions, but must find somewhere else to express our different gender attractions.

Guess how well that is working for bisexual people? We are the largest segment of the LGBT community, but the smallest group served by LGBT organizations. Our isolation and alienation have led to some disturbing trentds. Commpared to lesbian and gay people, we have higher rates of suicide, depression, intimate partner violence, poverty, poor helath… The list goes on.

So, back to this glass of mine, this glass of identity. In the trans community’s fight to use the bathroom in which they feel safest, we are demanding that trans people are allowed to define their own glass– their own identity. We must extend that same courtesy to people with disabilities, who get to decide for themselves if their disability is good, bad, or neutral. We must allow bisexual people to define their sexual orientation however they wish, not insist they express it in terms of heterosexuality and homosexuality. And we must stop forcing our own definitions onto others and when people tell us who they are, we believe them.

Courage

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Whenever the word courage is launched in my direction, I winse. I am not courageous, merely a human being, trying to live my life to the best of my ability. Period.

 

Courageous people are those who do things like run into rather than away from a burning building. They have made a clear, conscious choice to do something that is optional. A firefighter could earn a living teaching history, but instead she puts her life on the line each and every day. That’s courage.

 

There are also people who do something courageous once or twice in their lifetime, like many of those on September 11th who helped coworkers and strangers make it to safety. Such individuals could have easily taken care of themselves and left others to struggle alone. That’s courage.

 

I do not run into burning buildings or help others survive catastrophes. My courageous act seems to be living. In the examples I gave above, the individuals involved had clear choices. No matter how hard I try, I cannot find an alternative option to living my life. If in living and pursuing my own happiness I have to face harder things than most, I consider that a fact of life not courage, for some roads are smooth and others are rutted.

 

While I object strongly to the label courageous, I do admit to other traits, such as determination, persistence, and strength.

 

As much as I hate to even admit it, I do display something approaching courage, but it won’t be in the way you might imagine. I have some visible scars clothing could easily cover, yet I choose to not dress in a concealing manner. From my perspective, it is my simple refusal to internalize socially normative behaviors. However, after somebody has negatively reacted to my appearance, the next time I select clothing, it does run through my mind that I could pick something else. Since I am making a choice, I guess it falls under my definition of courage. But, really, it isn’t rescuing people from buildings or carrying somebody with a broken leg down flight after flight of stairs.

The Road to Discrimination is Paved with Compassion

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Lately I have become hyper-aware of situations in which kindness and compassion reign, but the end result is limitation and lack of choice. I tend to notice it happening when a group of people, including a person with a disability, are trying to pick an activity. With kindness and compassion, people will not suggest activities they feell aren’t possible for the person with a disability. That makes sense when it comes to not suggesting a peanut butter-making demonstration when someone has a peanut allergy, but not proposing a hike when a blind person is involved seems less reasonable.

 

My guess is the person not raising the idea of climbing a mountain is thinking, “Well, they can’t do that and I don’t want them to feel bad because they have to say no.” This sparing someone from having to be the “wet bllanket” is noble. On a deeper level, though, it might have less warm and fuzzy consequences.

 

Who said the blind person can’t hike? Unless that specific individual has directly mentioned they don’t hike, it is an assumption by a person without a disability about what a person with a disability can do, restricting the person with a disability. In the immediate, it means an entire group of people might miss out on a fun activity that had the potential to also broaden everyone’s understanding of what it is like to be sight impaired. What does a blind person need to hike? How does everyone work together to be certain everyone is enjoying themmselves? An opportunity was lost because someone assumed another’s abilities and tried to be kind.

 

There are also less obvious consequences. How, after allll, does a blind person learn how to hike if nobody ever takes them hiking? Will that blind individual ever think it is possible if the possibility is never presented? Someone else’s noble gesture mmight be, in fact, taking something away from someone ellse.

 

My cynnical side has a different possibility it keeps raising. On the part of the person not making the suggestion, how much is alltrusim and how much is self-interest? After all, including a person with a disability might mean everyone needs to walk a littlle bit slower or provide other forms of assistance. I can see space within this compassionate act that is more about just wanting to relax and have fun.

 

Much of what I write and think about these days boils down into a phrase that I would make the title of this blog, if that were easily achievablle.

 

Ask Not Assume

The You Cants

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Any person with a disability is entirely too familiar with the phrase, “You can’t do that.” If the Obstinacy Gods smiled down upon you at the time of your birth, you are temperamentally pre-disposed to say, “Says you, not me.” Should the Obstinacy Gods not have been so benevolent, hopefully experience, parents or teachers instilled the same reflexive reaction in your soul.

For me, being explicitly told I couldn’t do something in my mid to late adolescents did cause the reflexive reaction described above and I often steamrolled ahead to prove the person wrong. Unfortunately, the “You Can’t”s are typically not explicit statements you can then disprove. Rather, they are insidious attitudes and lower expectations. Nobody says you can’t do something, they just don’t expect it from you which subtly changes the landscape in fact making it harder to accomplish the goal.

Long before a teenager learns to drive, they are exposed to all sorts of information about driving from simple observation to more tangible experiences like sitting on a parent’s lap behind the wheel. People talk about the person some day driving. “Your Barbie drives a Corvette. Do you want to drive one when you get older?” It is assumed the person will one day drive and, guess what, they typically do.

Now, take a child with significant learning disabilities. Somewhere along the way, the adults in this kid’s life have gotten the idea into their heads that the child will never drive. Suddenly, all that exposure and assumption and planning and passive education vanish. It is often done to protect the child from “unrealistic expectations,” but simultaneously strips away all the advantages everyone else gets simply through the typical course of living. Not only does the child with a disability have to learn how to drive, they also must do it without any support and lacking the tools other kids are given to accomplish the task. That’s….. nuts.

CripFace

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No, it’s not some unusual facial expression that people with disabilities have nor is it a reference to an outer layer or surface. Think blackface, popularized in the 19th century as a means for white actors to portray people of color in theatrical performances by using makeup to blacken their faces, as well as wearing specific costumes and adopting certain mannerisms.

The term cripface has gained popularity as a means to refer to actors without visible disabilities who play characters with visible disabilities. Obviously, it is meant as a condemnation of the practice by those who find it insulting, disempowering and marginalizing.

Hollywood has a tendency to use actors without visible disabilities to play parts calling for a visibly disabled character. The practice is so common that, except in the case of Michael J. Fox or Marley Matlin, you can more or less assume a character with a disability does not have that disability in the real world. (“Growing Up Fisher”, “Joan of Arcadia”, “Riding the Bus with My Sister”, “The Piano”, “My Left Foot” etc.) In fact, chances are you can name more characters with disabilities than you can actors with disabilities.

The reason this happens is a chicken and egg explanation. Actors with disabilities are not cast in roles, unless the character specifically has a similar disability, so they do not get a lot of work. This means they have trouble gaining enough industry admiration to be cast in roles that include a disability. Instead, established talents with name recognition are sought to play characters with disabilities.

The practice is complicated by the fact that disability is often still utilized as plot devices to elicit certain responses from the audience, based on stereotypes and reliant upon inaccurate distortions of what it means to live with a disability. There are not strong, happy characters who happen to have disabilities filling the pages of novels or wheeling across the silver screen. If disability is a characteristic, it is a noted trait given significant attention and composing a major part of the plot because no creative gains would be made by a character with a disability who is “normal.” And, of course, if you have a character with a visible disability, that disability must somehow advance the plot. Thus, there are villains with scars, paraplegics bravely shouldering the tragedy of their situation and blind lawyers who made it through law school without anyone realizing they were blind. (It’s a major plot point in “Growing Up Fisher” and also impossible.)

Interestingly, blackface is attributed with both the proliferation of harmful stereotypes and bringing African-American culture into the mainstream. More than fifty years after the practice faded from the spotlight, the stereotypes blackface perpetuated are alive and well in our society, clearly demonstrating the harm the practice caused. Yet, there is no way to know what benefits the practice may have propagated, such as influences on music.

Proponents of casting people without disabilities in roles calling for disability often argue that at least characters with disabilities raise the public awareness of the existence of disability. Whether accurate or not, mainstream society is being exposed and how can exposure be bad?

Personally, I am not a fan of cripface when it does nothing to advance an accurate portrayal of disability. There’s no reason, other than actual storyline, to make a villain scarred, unless you are relying upon a noxious stereotype about ugly meaning evil, so don’t do it. However, if a role is based on a realistic portrayal, then anyone should be able to play the role. And, of course, the opposite should hold true. An actor with a disability should be able to play a role that does not specifically call for a disability. Why can’t a wheelchair user be an extra? For that matter, why couldn’t a “Gray’s Anatomy” patient have a prosthetic limb without it being a plot point? When disability is reduced to a characteristic that some characters have and some do not, that sometimes is relevant to the plot and sometimes is not and that doesn’t get an actor included or excluded from a role, then I won’t have a problem with cripface because it will no longer be a noteworthy event. It’s only a problem when prejudice, stereotypes and bigotry hold sway over Hollywood instead of a more balanced view of another facet of human variation.

 

This entry was written as my contribution to Blogging Against Disablism Day 2015. For some interesting reading, check out what others have contributed!

Never Give In?

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In the midst of a novel, I stopped dead in my mental tracks when I read, “She had never given in to her disability.” “Given in”? As though disability were a foe or unstoppable force.

To declare that statement foreign to how I relate to my disabilities is a drastic understatement akin to declaring a drop of water the equivalent of the Pacific ocean. (How’s that for dramatic hyperbole? Hold on to your socks because there’s more.)

If the common understanding of disability is a “force” in “opposition” to me, then it makes complete sense that people think I’m amazing for walking out my front door. After all, I have made the Herculean effort to fight against something keeping me in place. No, actually, trying to push me in a different direction.

Our collective consciousness is full of entities in opposition — good versus evil, freedom versus dictatorial constraint, healthy versus infirm and even smile versus frown. No wonder we cannot escape Hollywood’s determination to continue to use disability as a metaphor for evil, a social understanding of disability as life-constraining, the notion that a physical condition is contagious and even that having a disability automatically categorizes you as unhappy. We are in opposition to our condition as good fights back evil, freedom overcomes totalitarian regimes, health is a goal we “achieve” and happy shines forth from sorrow.

What a load of manure. I’m no more fighting against my disabilities than you are struggling to keep your cells all together in the form of your body. You just are and disability just is. Fact, people. Fact.

Blinded By Jealousy

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Even when I was partially sighted, I never used the term “visually impaired” to describe myself because it was too avoid-the-reality-by-using-a-warm-and-fuzzy-word for my tastes. Instead, I simply used blind.

Life has recently caused me to re-examine my feelings about this. A friend who is partially sighted and I shop at the same grocery store. We’ve noticed that employees who have worked with one of us first then assume the other one is exactly the same in terms of abilities and needs. The initial blind individual a TAB meets seemingly becomes their working definition of what it means to be blind, shaping assumptions that inform their expectations, perception of needs and predictions of ability. When the same word is used to describe markedly different individual circumstances, TABs cannot manage to grasp the difference.

These TAB behaviors shaped by the assumptions formed from observation of two people self-described as blind but with differing vision are at the core of the tension between those who are totally blind and people with usable vision. The totally blind are annoyed with those partially sighted for creating unachievable expectations in the minds of TABs. Those with usable vision are irritated when totally blind individuals describe themselves as visually impaired for the lower expectations engendered in TAB minds.

Guess what the common thread is here? Expectations of TABs. Aren’t they the ones to hold responsible for their tendency to assume one blind person is representative of all blind people? Yet, within the blindness community, much energy is expended arguing about blind versus partially sighted instead of viewing TAB attitudes and actions as the source of the friction.

Unfortunately, all that neat and clean logic hasn’t helped me. Spending time with people who can see some and identify themselves as blind, I have increasingly become frustrated. Their usable sight puts tools in their toolbox I do not have in my own. With these tools, they are able to do things not possible for me. For example, follow another person without needing verbal cues, identify landmarks even if they are just a blob and perceive grass from dirt by color. While they may seem small, they add up to something meaningful.

There is a flavor of privilege in those who are partially blind that irritates me. By using the same term, the benefits of usable sight are dismissed as unimportant. Think about it. I can’t make eye contact and that has major social disadvantages. Someone partially blind may be able to simulate or achieve eye contact and reap social benefits. How is that not privilege?

I’m really struggling with all this. I think using the word “blind” to label yourself is completely understandable and reasonable regardless of the amount of usable vision one might possess. I just equally find it frustrating that the privilege bestowed upon those with some vision goes unacknowledged by them. I want such individuals to call themselves whatever they want, understand they have privilege kind of like African Americans who can pass as white have privilege and not pretend we are exactly the same. Privilege is about socially sanctioned benefits based on social perception of the individual. If I could pass as a white, able bodied, heterosexual man, then even if I were a black, disabled, female lesbian, I would still receive privilege. How unfair would it be to pretend otherwise?

What’s the Opposite of Pity?

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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.

……because

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It all began when a person in a wheelchair boarded my bus and the driver made the person with the cart move to a seat where the cart would obstruct the aisle. I was not asked to move, but after the bus got underway again, I turned to the cart’s owner and suggested I relocate so she could have a seat where the cart would fit. In the process, I bumped my head.

……because I tried to help.

Next stop my psychiatrist’s office. Typically, his patients flip a switch to indicate their arrival. I cannot do this since there are no accessible labels and I cannot seem to retain the switch location in my head. It has never been an issue in the two years I’ve been seeing him — he’s always come out into the waiting room to retrieve me. This time around, when I had waited ten minutes past my allotted time and could hear him speaking back in his office, I called leaving a message on his voicemail indicating my presence. Another patient eventually arrived, flipped the switch and my doctor materialized, seeming surprised at my presence.

When I said, “Um, I don’t know which switch to flip and this has never been a problem before,” his reply blew my mind. “I just thought you weren’t coming. I never thought about the switch.”

……because I’m so unreliable.

Next was the man by the elevator. He clearly wanted to be helpful, did not know how and used hovering as a means to deal with his internal conflict. He kept telling me things I already knew or was working on figuring out and then continued WATCHING me.

He did alert me to the goo stuck to Camille’s leg, becoming flustered when his phone rang while he was trying to pull it off. I waved him away, determined removal by pulling wasn’t going to work and took off. While waiting for the bus, I used the handy scissors on my pocket knife to remove the goo-matted fur from Camille’s leg.

……because boy scouts have nothing on me.

Once again on the bus, I was sharing a three-person seat with a man, who moved when an elderly woman joined us. The woman made loud, critical declarations about his behavior and I think I offered something like, “Maybe he thought three people and a dog was too much on one seat and decided to give us some space.”

Then the woman began to tell me about her blind neighbor. This *never* turns out well. Ever. Her neighbor was “so amazing” for doing everything on her own, even shopping. She could cook, too. It was all just so amazing that she thought the woman couldn’t possibly be blind and had an argument with another neighbor about it. I suggested maybe she could change her definition of what a blind person could do.

I was then told about how this blind woman assembled her nephew’s birthday present on her own, using screwdrivers and everything. “Amazing” was repeated a few more times. I said I liked to assemble furniture.

The topic shifted to her evening’s attendance at a baseball game. She has back trouble and the stairs are really steep. I commented that it sucked that ball parks weren’t accessible to everyone.

She thought it was just wonderful that strangers would reach out and offer their arm so she could descend the stairs. I repeated my comment about lack of accessibility. She repeated that people were just so wonderful.

……because “wonderful” and “amazing” hadn’t been said enough.

Off the bus and walking home, I was crossing a street when not one, not two, not three but FOUR skateboarders whizzed past me while I was in the middle of the street, startling Cam so much she actually moved sideways and stopped in her tracks..

……because the joy of boarding trumps the safety of others.

Upon arriving home, I yelled “ARGH!” at the top of my lungs and then did it a few more times. Camille went and had a drink of water. About when I stopped the yelling, she walked over and vomited up… everything at my feet.

……because a comedic author is clearly crafting the story of my life.

Perspective

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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.