Tag Archives: stories

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.

 

 

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.

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?

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.

 

Eye Contact

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You walk into a coffee shop planning to be a total hermit behind your book while you enjoy a beverage. You see a blind friend hanging out with someone else. In such circumstances with a sighted person, you would probably make eye contact, smile and move on. However, that’s not possible in this situation. What do you do?

I can tell you what to NOT do under any circumstances. Say nothing at the time and then later tell the blind person you saw them. It’s creepy. And somehow demeaning. Oh, yeah, and it seemingly feels worse when you are female.

The better move is this: Walk past the table – not over, but past – and say, “Hey, it’s <name>. I’m just passing through.” Done. The reason, by the way, for the “walking past” part is that it provides the element of casual eye contact as opposed to a desire to engage in extensive social interaction.

People seem hesitant to offer a verbal greeting for fear that they will get sucked into a conversation. While that risk does exist along with the possibility of awkwardness, those should not be obstacles to doing the right thing. By approach, you can minimize the risk.

And, did I mention, it is otherwise creepy and somehow demeaning?

……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.

Grated Cheese

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No, I’m not going to make some esoteric comparison between grated cheese and some aspect of disability. This is simply a story about grated cheese.

To demonstrate that my stressed-out state heads more in the direction of depression than anxiety, I told my psychiatrist (not FabTherapist) about the following event:

Getting ready to make an omelet, I went to the refrigerator to fetch the sautéed vegetables I had, the already grated cheddar and other useful ingredients. The Ziploc bag of cheese was not where I’d left it. It wasn’t next to where I had left it. It wasn’t anywhere that I looked.

So, I sat down on the floor before the open fridge and sobbed. Inconsolably.

My psychiatrist said, “Well, that’s about your disability…”

Um, until that very moment, I hadn’t thought about it in those terms. I was just a person who couldn’t find something and had a very intense, dramatic response. Blindness had nothing to do with it. The thought, “If I could see, I could find the stupid cheese,” never crossed my mind.

The psychiatrist, though, went there immediately. I find that fascinating.

Public Property

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Pregnant women often speak about total strangers asking to touch their bellies.  The social mores that keep people from requesting contact with the body of someone they do not know suddenly vanish in the face of that rounded mound of baby.  Even worse, a significant number of people don’t even request permission before giving a rub.  I cannot come up with another situation, except maybe when it comes to “directing” a blind person, in which respect for bodily personal boundaries is ignored.  Even when an individual in a crowd simply brushes up against a stranger accidentally, they apologize.

This behavioral anomally around pregnant women has been framed in terms of the woman’s belly becoming public property – as if everyone has the right to touch it the way they would a soft blanket on display at a department store.  Attempting to explain a specific behavioral tendency that currently has me annoyed, I reached for an example my therapist might understand and came up with that of pregnant women’s bellies.  Aspects of my life are being treated as public property.

Approaching a bus stop where I was to wait for a friend, I was asked by a man if he could pet my dog.  I said no explaining that while wearing the harness, she was working.  Apparently, he didn’t like my answer because a tirade ensued.

 

He started with the point that one little pet wasn’t going to be a problem.  I disagreed.  He then said I was being cruel and was I afraid my dog would hurt him?  I tried giving the complicated explanation about distractions and my safety.  He said if my dog was that badly behaved, she wasn’t trained well.  Was I just not training my dog properly?

 

I admit snapping at that point and saying something about having a dog previously that was highly distractible leading to me getting my nose broken.  That did not penetrate his skull.

 

About then, my friend’s “Just walk away.  He’s nuts>” penetrated and I tried leaving.  Really, I tried.

 

I had to turn back when he told me I should “Just stay home.”  Excuse me?  I don’t think so.

 

Let’s just say it went south from there and he was really insulting.

 

My point?  This man treated me, my dog and my life as though he had a right to comment upon them.  Everything about me had suddenly become public property.  I was the politician whose life is open to public scrutiny.  I was the actor living in the public eye.  I was just lacking any of the compensatory perks either of those roles supposedly bestows.

 

The worst part?  People stood there watching and did nothing.  Nobody said, “Hey, man, it’s her dog.  Leave her alone.”  In their silence, they were condoning his behavior.

 

To paraphrase a mother-to-be’s comment, “It’s my dog.  Keep your hands off!”  And, I would add, your opinions to yourself.