Tag Archives: Oppression/Discrimination/Bigotry

Public Speaking “Adventures”

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I was honored to be asked to speak at San Diego Pride’s Spirit of Stonewall Rally, which launches our city’s Pride celebrations. My mission was to come up with something true about both the Bi+ community and people with disabilities, distilled down into three minutes. For anyone curious, that’s less than 400 words. I found it incredibly difficult to accomplish this and in rising to the challenge, I learned useful things about my speech writing and public speaking process. (I’ll post the speech text in a subsequent post.)

While waiting to speak, the MC of the event — a member of San Diego Pride’s Board of Directors — invaded my personal space, touched me without my permission and made it clear he is bisexual. It is my hope that the last fact was uttered to find common ground with me, not as a sexual overture. The visuals of the entire event has been preserved for posterity.

Before you watch it, I should convey a few facts. Prior to speaking, I was warned the stage had a variety of obstacles and the back had no railing. I also suspected I could be seen from the audience as I waited for my turn to speak. Finally, as a Pride volunteer, the person invading my personal space was my ultimate boss.

You will find me at the back right of the stage, wearing a blue dress and accompanied by a black lab of incredible cuteness.

https://www.youtube.com/watch?v=7NIkTxJZdTc?t=40m50s

AS you may have noticed, the MC also “assisted” me to the podium. This was not based on any request of mine. In fact, it was not in keeping with the arrangements I’d made with San Diego Pride’s amazing staff.

So, to summarize, I was touched by someone without my permission and helped against my express wishes. Believe it or not, it took me a week to realize what happened was not acceptable. A week. (I’ll explain why in another post.)

Once it dawned on me that nobody should be treated in that manner, I brought it to the board’s attention. The person who responded said the board clearly needed more disability awareness training. When I pushed back, arguing no person should have this happen to them, disability or not, I received no response. Then life got a bit nuts with other things. (I’ll post about that later. I’m up to three now.)

I did not attempt to push the issue until September when Pride’s board did something else I found questionable. At a public meeting, I spoke about my experience in the vaguest of terms, allowing the offender to remain anonymous. Unfortunately, later in the meeting, when someone else referred to my accusation, Jaime Carrillo decided to announce, “I did it. It was me!” When someone suggested Mr. Carrillo apologize, I clearly said I did not want one. I just wanted him to stay away from me.

A month later, I attended another public board meeting and learned one of the board’s Co-Chairs had stated my situation had been resolved to my satisfaction. Having never even spoken to this person about what “resolving to my satisfaction would be, I objected.

At this same meeting, Mr. Carrillo managed to not honor my request to stay away from me. I grant you he was in a difficult position since the only path out of the room went directly by me. Instead of asking someone else to run his errand or verbally letting me know he was coming past, he simply walked by me, unfortunately tripping on my guide dog, which caused me to know he was very near me.

A week later, a story was published in the San Diego LGBT Weekly about what happened to me. It can be found at:

http://lgbtweekly.com/2016/10/27/volunteer-details-pride-officials-alleged-inappropriate-behavior/

 

The same day the story was released, I was contacted by the board for a meeting to, no kidding, “discuss the safety and well-being of everyone.” I suggested a more specific agenda related to what had happened to me and they agreed to the meeting. One can only assume they have agreed to the items I listed.

Stay tuned for whatever happens next and I owe you all some follow-up posts.

 

 

Learn to Laugh

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Freud categorized certain common coping strategies as “defense mechanisms.”  Most people are familiar with at least a few of them – repression, denial, regression and rationalization. Later, scholars broke them down into hierarchical categorizations.

Believe it or not, humor, where an uncomfortable or unpleasant internal reaction is transformed into a more enjoyable emotion, is considered one of the “higher-order” defense mechanisms.

Since high school, I’ve known my tendency to seek the humor in the things that happen to me was a way of coping with the inherent discomfort.  A couple of weks ago, a line from a song reminded me of this:

 

It’s only funny ‘cause I learned to laugh.

 

How many of us, with what degree of frequency, teach ourselves to laugh instead of cry? Another musician’s words come to mind:

 

You have to laugh at yourself, because you’d cry your eyes out if you didn’t.

 

I worry about how people with disabilities handle the ongoing, daily discrimination and oppression they face. I’ve watched many people become increasingly bitter and then be rejected more because of that bitterness.  I’ve noticed others become comedians, poking fun at themsellves before another can do it.  (This is often hard to discern from those who use humor as a means to dispel others’ discomfort.)  Sometimes the humor turns dark, as if the bitter and the funny were shaken well, then poured.  As I think back, I know my own use of comedy has evolved, from protective to bitter to something cleansing.

No matter how we have each learned to cope, our coping sprang from a need to handle constant emotional assaults from the outside world.  Yet, our world praises the disabled comedian and shuns the bitter one.

I’m not going to suddenly give up my tendency to find the funny, but I am beginning to wonder if bitterness is, in fact, a more honest reaction.  How people with disabilities are treated is painful.  Transforming that hurt into humor is far more enjoyable for everyone involved, but is it as honest as bitter?

 

The following was posted as my contribution to  Blogging Against Disablism Day 2016 

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.

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.

 

Pride with a Side of Alienation

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Last July, I attended a Pride rally which flooded me with a wonderful sense of community, while simultaneously left me feeling alienated. When it comes to things like rallies, I often experience this same mix. Attending to enjoy the sense of community and common purpose, I tried to soak up the vibe only to ingest a nice dose of “But You Don’t Count” along the way.

I know the event was a rally about LGBT pride, focusing on issues that impact the non-heterosexual population and meant to highlight our bonds of community and common purpose. If everyone had stuck to LGBT issues exclusively, I might have not felt like “other.” However, from issues of racial equality to immigration, border security to employment rights, many speakers addressed other “liberal” causes. Lists of marginalized groups who we should stand with in their fight for equality were mentioned. Not once did disability pass the lips of any speaker. Not once.

As I sat in the “ASL” seats – because apparently only Deaf people need accessible seating – I listened to one man talk about LGBT youth. He rattled off one statistic about how many LGBT young people report hearing negative messages about their identity from the mouths of public officials. Suddenly, it dawned upon me. We think of negative messages as damaging. How harmful, though, is that which is left out entirely?

When George Takei asked us all to stand, face the flag and recite The Pledge of Allegiance with him, I had no idea where to look. As Norma Chavez-Peterson of the American Civil Liberties Union asked for us to join in the fight to help all oppressed people, those with disabilities were left off her list. A universal message of love and social justice permeated each speech I heard, yet not one person managed to identify people with disabilities as one class of individuals needing support in their fight for equality.

What message does that absence send? To me, it says that I am not thought of when issues of social justice are considered. My marginalized group is not one deserving of the same help and solidarity. I don’t matter enough to be included.

The ways people with disabilities are divergent from other marginalized groups is often the reason given for why we are not included in the list of social justice causes. We need special things that cost money, we are unable to do stuff and you can point to some substantive difference engendering more negativity than skin color or gender preference. Our difference is not viewed as diversity, making us separate from other social justice causes. And, as we all know from school integration, separate is inherently unequal.

So, as I tried to connect with my LGBT community, I had to stop thinking about my identity as a person with a disability. I could either be a member of the group being celebrated or a member of a group not thought worthy of mentioning. Very healthy for my self-esteem.

At least there is an honesty in all this. Should someone have thought to include people with disabilities, it probably would have been in word but not deed. So, for the lack of hypocrisy, I am grateful.

What He Said

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I could not have put this better myself if I tried for a week.

http://www.planet-of-the-blind.com/2014/03/the-able-bodied-blues.html