Category Archives: Taking It Apart

What Vulnerable Implies

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I am in the mood to dissect the word “vulnerable” as it is used to describe groups of people. You’ve heard it a lot this election cycle: “The most vulnerable among us are at greatest risk if x, y and z policy are put into place.”

I’m not attacking the concept of vulnerability that Brene Brown has articulated so well. It is important to be willing to risk ourselves emotionally, especially if we want to find authentic connections with others. Vulnerability on an interpersonal level is great and I only wish I were better at it.

I’m talking about vulnerable, the adjective, meaning suseptible to being wounded or attacked. My issue isn’t even with the word itself, but its application when used to describe marginalized groups who are perceived to be able to be harmed because of their group membership.

I find it to be a very disempowering word. Moreover, I find it to be an inaccurate word. There are two general schools of thought about how disability is defined.  The first says that I am disabled because my body possesses a set of traits that make it impossible for me to do certain tasks, so I’m disabled. Another theory holds that those traits are only disabling because we live in a society with a specific structure that only provides for given tasks to be achieved in particular ways with a limited set of tools. The first theory says I’d be disabled no matter what environment I inhabit, tools I’m given or varied ways a goal can be achieved. The second says that I’m only disabled when I’m placed in a specific set of circumstances and that a different set would not make me disabled. The question turns into this: Am I disabled by something inherent within me or by the world I occupy? I would argue it is the world I occupy.

Back to vulnerable. The way the word is being used lately implies the susceptibility of the group is based on a trait of that group. Vulnerability is reliant upon the group definition. It strips away all societal structure, outside factors and cultural context. Children, seniors and people with disabilities are vulnerable because they possess certain traits putting them at risk. From this perspective, people within “vulnerable” groups are almost victims, without any remedy for their vulnerability.

I beg to differ. Our vulnerability comes from the world we inhabit. The laws, policies and practices of our society make us vulnerable. If we lived in a world where seniors were given enough money to live a reasonable life, including access to medical care, etc., sufficient to meet their needs, would they still be “vulnerable”? Similarly, if all children had access to the same high-quality education, sufficient food, clothing and shelter, safe places to live and parents equipped to nurture them, would children be “vulnerable”?

The way our world works makes certain groups susceptible to attack and harm, not the nature of the group itself. When people talk about the most vulnerable among us being at risk in a Trump administration, they are tacitly agreeing to a version of reality that assigns the cause of the vulnerability based on the characteristics of the group. People with disabilities are vulnerable because their bodies work in certain ways, not because they happen to inhabit a world functioning with a specific set of rules. It is like defining how a race can be won so narrowly that most of the competitors cannot actually win.

I have no idea how to solve this problem because I don’t currently have a word or phrase to replace vulnerable. The best I can do is “people made vulnerable by our society.” So, for now, one could say, “A Trump administration appears poised to inact policies that will place those our society has already made vulnerable more at risk.”

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.

Mean Authors

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I’ve discovered a new genre of books. It’s the “She’s Less Scarred Than She Thinks She Is” category, which is characterized by a female protagonist who has facial scars, typically received in some horrific childhood accident. The tendency is for parents to somehow be involved in what happened, leading our heroine to have complicated family issues intertwined with her issues about being scarred. Unfortunately, rather than these issues being portrayed as separate, the author implies the family issues are an extension of the scarred woman’s baggage related to her “horrific” appearance. If she only got over her scars, then she would also free herself from familial discord.

In these novels, the reader mostly learns about the scars and their horrific nature from the protagonist, who uses words like “disfigured.” We also learn about how people react to these scars largely from her perspective. In other words, the scarred person is telling us about the scars and what it is like to have them. Other characters either don’t mention them or behave as though they are the equivalent of a zit. When the scarred woman directly mentions her disfigurement to other characters, they say things like, “Everyone has scars,” “I bet most people don’t even notice them,” and “Maybe you should care less what other people think.”

Speaking for people with facial disfigurements the world over, I wish to register my complaint that this category of books are not only false reflections of what life is like for someone with scars, they are actively harmful to those of us with scars. It’s irresponsible for a writer to pretend to know about something like this when they have not walked in those shoes. It is one thing to imagine what it would be like to be a thirty-something lawyer who is a mother of three kids and another thing altogether to imagine what life is like for a person with facial scarring. It would take an extremely talented writer with a very high degree of empathy to do such a character justice and most authors are not Lois McMaster Behold.

To debunk the myths these books perpetuate, let me start with the easiest. “You should care less what other people think.” That’s a great idea, but it misses the point. it isn’t what other people think that is so harmful to a disfigured woman. Rather, it is what people do – treat the person differently. Not getting a job because you are scarred is not based on someone else’s thoughts. Being treated with pity is not based on mere thought. Having trouble dating is not a problem caused by thought. Not caring what others think will get you nowhere because it is the actions of others that are at the crux of the problem.

“I bet most people don’t even notice them,” is a statement typically based on an individual’s own perception of the scars. Since they have grown accustomed to their presence, they assume that must be the case for others, even total strangers. It is a conclusion based on the notion that one’s own current experience is identical to everyone’s experience, regardless of differing circumstances. Dr. Jones teaches medical interns to remove gall bladders based on the one time she did it. She does not concern herself with teaching about how lifestyle, age, weight or other aspects of medical history impact the surgery because her experience was a certain thing so everyone’s experience will be that same thing. Personally, I would not have Dr. Jones or any physician trained by her operate on me, but you go ahead.

Now, for my personal favorite of “Everyone has scars.” This fallacy is pervasive in our culture. I hear it about disability and sexual orientation all the time. Oddly enough, I never hear it about race, religion or ethnicity. “We all have some Jewish in us,” is not acceptable. Why, then, is it perfectly fine to invalidate a person’s entire life experience by minimizing it to, “Everyone has it.” I can tell you with complete certainty that I have scars very different from those of your average forty-something woman and we experience life in very different ways.

My biggest problem with novels in this genre is the damage they can do to someone who lives with scars. She isn’t going to be guided to some place of personal fulfilment and emotional health by reading a book that invalidates her experience. Instead, she will feel like she’s failed because, unlike the female protagonist, she has not suddenly realized her beauty and begun living a fairytale existence. Holding out that carrot of happiness is cruel because no amount of personal or emotional growth will change the world we live in. It’s not kind to people with scars on their face. Pretending otherwise, turning that delusion into a novel and letting it go out into the world is irresponsible and mean.

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.

Beyond What’s Comfortable

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In all the promo emails of a band I like, they talk about giving to others beyond what is easy or comfortable. Reading between the lines, I think the idea is that giving to others when it is not much effort is a superficial gesture that while helpful to the person receiving your largess, does not come from the core of you. To connect with your core – to give in a way that moves beyond yourself to put the focus on another person,– is really what it is all about. Besides, giving to others shouldn’t involve you and your ego, instead it should be about the person and their needs.

Whenever I’ve read one of their brief references to this life philosophy, I’ve thought, “That. It’s about that.” Until five minutes ago, I hadn’t gone past that reaction to think about why the sentiment speaks to me on an instinctive level while not being a universal no-brainer to the rest of the population.

I think it’s about the nature of my life and the choices I make each day. Long ago, probably before I understood the concepts, my decisions about what to do and what not to do stopped relating to the ideas of easy and difficult. For someone with a physical disability, tasks can be harder than for the non-disabled people surrounding them. Quickly you realize that if you want to be a part of the world, you need to not let tough be a deciding factor. Rather, it needs to be about want, need, can and cannot. If I want to do it and I’m capable of it, then I do it. On the other hand, if I want to do it and no effort in the world will make it possible (i.e., a blind person becoming a neurosurgeon), then I need to rethink things.

My life is full of choices about desire and possibility not ease and comfort. It is no wonder that when it comes to giving to others, I instinctively don’t think in terms of effort and ease. I make decisions about aiding others based on their need, my ability, and my desire to help, largely based on how much I care about the person. And based on what these musicians are saying, this might be where I fall short.

Should helping be limited by how much you care? When I think about it with me as the helper, I see reasons to answer yes. Cast in the role of helpee, I have reasons to support the opposite perspective.

I like to think making helping decisions based on the amount I care is about allocating resources. I’m one person with limited energy and should probably distribute that resource with care. However, careful conservancy of energy is not dictated by caring. I’ve simply used that as an easy, convenient way to make choices. Possibly I need to move beyond using the easy benchmark of caring to other more selfless factors?

Far clearer are the variables when I am cast into role of helpee. Of course total strangers should help me if they can. Time, effort, convenience and caring shouldn’t limit others. I need help (damnit), so help me. And, yes, on some level I’m that ridiculous. I suspect anyone would be if they were standing on a street corner, confronting crossing a highway off-ramp, and pretty certain of becoming road pizza if they step off the curb.

The challenge in modern society is to find a way to navigate seeing many people in need while working with limited resources.  Our decisions should be less about ourselves and more about the one we would aid.  From what I can tell, many are challenged by having to look beyond their own ease and discomfort.  Once you move past those factors, others — like allocation of resources and decisions about who — are the new hurdle.  It isn’t like once you stop thinking about comfort and ease the situation is magically clear.  It just becomes about other factors that equally call upon us to dig deep and walk a path that requires us to care about those we don’t even know.

PTSD. Again.

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In mid November 2013, I stopped writing in this blog. I had another traumatizing experience during a medical procedure and was unable to function normally let alone write anything that touched upon emotions. Coming back to this blog was prompted by a need to learn how to use WordPress on my iPad for the Braille Institute class. Then Braille Institute decided to establish a name badge policy and outrage worked as an awesome motivator.

Now it is time to write about what happened. As you read my recollections, please keep in mind that trauma is often stored in our brains not as narrative memory but as snapshots leading to disjointed recall.

I woke up from a trachea stretch with a tube keeping me from speaking and unable to move properly. There was a lot of chaos around me with people saying thins like, “Jen, squeeze my hand.” Nobody said things like, “Jen, I’m <insert name> and I’m going to do this.” Nobody appeared to be focused on keeping me informed of events or trying to establish a line of communication.

The tube came out quickly. The inability to move properly resolved itself. The damage was already done in the moment when I came to consciousness and couldn’t move, speak or understand what was happening, isolated in a scene of chaos. More trauma came as I learned that the situation might have been avoidable if better choices had been made by some of the clinicians involved.

Upon arriving home, I knew I would have some sort of reaction to my experience, but I wasn’t quite sure what. It took about twenty-four hours before the first signs became obvious. I walked across my kitchen and set the toaster oven tray in the sink. Then I crumpled to the ground in a ball and sobbed. There was literally absolutely no immediate cause for the tears. They just happened.

The uncontrollable sobbing became my life with tears unpredictably surfacing one to three times a day. I could be reading a book or chatting on the phone or sitting in a meeting and tears happened sort of like a sneeze – there are things you know will cause it, ways to possibly delay it, but sooner or later, it bursts forth.

Eventually I learned those delaying tactics, making being out in public somewhat more possible. Sometimes I was even able to identify what caused the tears and what emotions I was feeling. Once in a while it was even related to immediate events and not past trauma.

There is something unique about re-traumatization – having experienced trauma, developed PTSD and been successfully treated only to endure a situation similar enough to be the equivalent. then you are coping with PTSD from the recent trauma along with PTSD from your history of similar trauma. In some ways it is like light reflected between a multitude of mirrors so that the intensity of light is greater than any component part. It’s wildly exponential math. It’s emotion magnified, refracted, blenderized and placed in a pressure cooker with a faulty valve.

My entire life ground to a screeching halt. I gave up any notion of doing anything more than going to therapy, walking the dog and making sure we both ate and slept. I did things requiring use of my hands – sewing, baking, knitting – to fill my mind with something because it left less space for trauma. I didn’t visit my family for the holidays. I only talked to people who didn’t make me more upset. I kept asking for topics of conversation to be dropped before I lost it. Again.

Time passed and I was able to control enough of what was happening to begin tentatively living. Then, I knew another trachea stretch was on the immediate horizon because that’s how my stenosis works.

Part of my PTSD symptomology is that I cave in front of anyone I see as an authority figure or more of an expert in a field. Talking to doctors was harder than… crossing an eight-lane highway without a cane, dog or even audible traffic signals. I did it badly. I somehow got through it.

This time, the procedure went smoothly. With a positive experience the most recent in my memory, my life has settled down. I have been able to resume my regularly scheduled existence, just with way more therapy and a conscious commitment to real down time.

Here’s the interesting part. I’m being put back together in better shape than I was before November 15, 2013. I’m not doing it consciously, but I see things happening inside myself that I know will lead to a stronger me. I’m still having trouble wrapping my head around that.

 

WHAT WE MISS

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In “Flowers for AlgernON,” Charlie Gordon, a man with a cognitive disability, undergoes a procedure that triples his I.Q., only for the experiment to ultimately fail, resulting in a return to his initial level of cognitive functioning. I am reading a novel in which a character with Aspberger’s Syndrome declares Charlie “stupid” for doing it in the first place because “now he knows what he’s missing.”

People born with a disability never experience life without the physiological limitations of their condition and common wisdom is that they never know what has been lost. While I agree they never know what they lack in terms of being sighted or neurotypical or hearing or possessing all limbs or whatever, I would argue that there is a vast amount being missed that such individuals are clearly, concretely and excruciatingly aware is not present – the social perks of normalcy.

Think about this for a moment. People with invisible disabilities – ones not known to others unless they are specifically told — struggle over whether or not to reveal their condition. Why? It cannot be because of the limits of their condition for those are present no matter what. Rather, it is about how others will respond to the new information. It’s about social consequences of possessing the trait of disability.

Anyone with a disability at some point watches those without a disability as they move through life. It’s on our televisions, in our books, on the bus and even in our own families. Non-disabled people are granted an ease in living from social interactions to dating to becoming a parent to joining a group, all because they do not possess a specific trait. They have done nothing to “deserve” this effortlessness nor do they usually realize its presence. It’s expected, counted upon and presumed to never be different.

Meanwhile, people with disabilities tend to live a different sort of life. All that ease and freedom and smooth sailing is denied them not because of the functional limitations of their condition but because of the existence of the condition.

And we know what we are missing. Though we might eventually reach the same destination, the journey will not be the same.

And we will watch people no better or worse than ourselves enjoy social lubrication we can never experience.

And it will be because we possess a trait. It will not be because of the consequences of the trait. It will be the mere presence of it.

Forever, we will be on the outside looking in. Forever, we will know what we are missing.

What I cannot enjoy because of the limits of my visual abilities is an insignificant fraction of what I know I am missing. If I could secretly see everything without anyone ever knowing it – if I acted blind though I could see – I would not feel like I suddenly gained some lost thing. What I will forever miss has nothing to do with not seeing and everything to do with what I do not receive because of blindness’s simple presence.

Here’s the best way I can explain it to non-disabled people:
It is the bar of amazing chocolate on a shelf high above your head that you are unable to reach. Meanwhile, many other people come by, take down the bar of awesomeness, have a piece they devour before you with obvious enjoyment and then replace the bar again beyond your ability to grasp. Over and over again. Your entire life. Maybe with a tiny nibble just often enough so you can never possibly forget the delicious flavor.