A Lukewarm Welcome

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Guest post by Mike Croghan

A few weeks ago, my friend Jen was in town for an event at the White House with the US bisexual community. Jen arrived on a Saturday evening, and my wife Tina and I were excited to bring Jen to church on Sunday to meet our friends there. Tina and I are part of a small, independent, progressive, non-hierarchical Christian church community that meets in a coffee shop and concert venue. The community has a long-established track record of welcoming and including all kinds of people, regardless of religious beliefs, race, ethnicity, or sexual or gender identity. The community does not have much history with people with disabilities, but it never occurred to me that this would be an obstacle to welcoming Jen. (As you probably know if you’re a reader of this blog, Jen is blind and has an adorable guide dog named Camille.)

We got a little bit of a late start, and showed for the customary post-church lunch gathering at the Chipotle next to the coffee shop. The folks from church had taken over all of the outdoor tables on the patio. Jen and Camille and Tina and I came up to the closest table to the entrance, which was occupied by a gaggle of kids. We said hi, and some of the kids (who were done eating) got up and went to play elsewhere, so Tina and Jen and Camille sat down, and I went into the restaurant to get us food.

When I came out, the three of them were moving to the table at the far end of the patio, where our friends Maranda and Heidi and Ryan were sitting. Tina later told me that this was because nobody was talking to them at the other table. Heidi was just leaving for an appointment, and Ryan was done eating, so there were available chairs. We sat down and ate, and Maranda chatted with us, but no-one else came over except for Lydia, a middle-school girl who came up and talked to all of us. When I was done eating, I got up and talked to some other folks, and I noticed that Leigh, our former church intern, came over to the far table at one point, and Tina told me that another person came over and spoke to everyone at our table except Jen. But apart from that, I don’t think any of the 25 or so of our friends on that patio talked to Jen – or even to Tina or me when we were with her.

There was no single, individual lack of interaction that felt at all rude or hard to explain. People were absorbed with their own families and friends. Folks had visitors in from out of town that they rarely got to talk with. There were little circles discussing church business, or the service that had just concluded, or recent movies. There was no particular individual that I would fault with failing to welcome Jen – but in the aggregate, the group’s silence boomed loud. I was pretty disappointed in my community, but talking to Jen about it later, it seems like it was all too typical of her everyday experience.

It’s hard for me to say for sure what led to this uncharacteristically rude group behavior. I can’t know what motivated anyone without talking to them, and it’s hard to single out anyone to talk to. Because, as I said, it seemed to me that the group behavior, not any individual’s behavior, was problematic. But if I had to guess, I would guess that my friends didn’t approach Jen (or us) because talking to a blind woman was unfamiliar territory for them. They were afraid that if they tried, they would do something wrong – so they chose the “safer” route and didn’t try. And in their concern to avoid screwing it up…they screwed it up. So, if I’m right, the underlying problem was a lack of knowledge and experience – things that could only be gained by a conscious effort to explore territory beyond the communal comfort zone. Which is an opportunity that they had, and missed out on, on a sunny Sunday morning in September.

Changing Perspectives

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I was fortunate to be invited to the recent White House policy briefing for the bisexual community. Even better, I was able to attend thanks to help and support from a variety of people.  (You know who you are and your help is appreciated.)

While in DC, I stayed with Mike and Tina, friends from high school.  We all trooped off to a

weekly lunch that always follows a faith-based gathering – the equivalent of coffee after church. In general, this collection of individuals is progressive and has a sense of social justice.  Over the years, Mike has told me a great deal about this caring and supportive community where he has invested so much of his time, energy and heart.  I was eager to go forth and meet everyone.

It did not quite work out that way.  I was a part of one conversation, introduced briefly to another person and mostly simply absorbed the vibe.  Oh, yeah, and Camille and I displaced people from their seats not because I asked, but because they decided I needed the seat more and went elsewhere.  (I can’t be sure, but I think the table had empty seats, so I felt a little bit like Typhoid Mary.)   In other words, it was my typical social experience.

Later, I learned this is not the way this group tends to treat new people.  Fortunately, the circumstances present a rare opportunity to hear from someone familiar with the group who can comment upon the ways their behavior strayed from their normal patterns.  Mike, who has helped and supported this blog for years, has been drafted to offer up his observations.  I shall yield the floor to him, but I will reclaim it to discuss one factor I think contributes to the quality of my social experiences, which other events during my DC trip highlighted so glaringly that even the blind person noticed.

 

 

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

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!

Events Previously Known As Legend

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Every once in a while, a sequence of events unfolds that I previously thought only happened to someone else. And I had never in fact met that someone else. They were events found solely in rumors and I had more than a passing suspicion they were urban legends.

Well, the other day, I went out to the bus stop and sat next to a woman. We exchanged small talk before I zoned out. When I came back to reality, some man was standing before me offering me something. I’d missed the naming of the something.

“Hold out your hand,” he demanded.

“For what?” I asked.

“A dollar for you to take the bus,” he explained.

“No, that’s okay. I have a bus pass, so I’m good.,” I replied.

The man went over and sat on the opposite side of the woman on the bench, and then said, “When God gives you a blessing, it may not seem like a blessing, but you should take it anyway because blessings come in unexpected ways.”

“Uh, okay.” I said.

The woman on the bench is moved to get involved. Turning to me, she said, “I think you hurt his feelings.”

I did a flabbergasted open and closed mouth thing and ignored them.

You can’t make this stuff up because nobody would believe you if you did.

Please Pass the Butter

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Imagine this: You are sitting at the table, enjoying a meal at a friend’s home. There is a lovely muffin on your plate that would be fabulous with butter. Nobody has yet mentioned the existence of butter and without being able to see, you have no idea if it is on the table or not.

If you ask and it is not there, then somebody will jump up to retrieve it. As much as you’d like the butter, you don’t want to inconvenience anyone.

This dilemma happens to me all the time. I hate the feeling of not knowing if I’m requesting something that will take a moment to passs or will cause drama to locate.

The situation is not limited to food and meals. At the moment, I am trying to figure out how to determine if my yoga studeo has a community board where I can post a flyer. Should I ask and it not exist, the staff is the sort to go to excessive lengths to somehow make an exception or create one or something. Given that I don’t want that, how do I ask to gain information without spurring anyone to excessive lengths?

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.