Tag Archives: social interactions

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.

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.

 

 

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.

 

 

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.

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?

An Inconvenient Truth

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  • Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.

 

This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

fhttp://tinyurl.com/BADday201Blogging Against Disablism Day 2014

Who?

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Pop quiz time everyone. Sharpen those pencils – or maybe in this day and age it’s create a new note on your phone – and get ready to answer a few simple questions.
1. If you needed a ride home from the emergency room, who would you call?
2. You need to move a piece of furniture that’s too heavy for you alone. Who can you ask?
3. It’s Thanksgiving and you aren’t cooking for anyone. Who will include you in their celebration?
4. You are sick with the MartianDeathFlu. Who will offer to come over and make you something to eat?
5. Who will go out of their way to come give you a hug on a bad day?
Now, on your list, please remove anyone in your family or that you are dating. Take off coworkers as well. Who does that leave you with?
One of the consistent problems plaguing my life is a lack of someone to help and support me. Whether the pragmatic or the more intangible of emotional support, I seem to routinely have no answers to the above questions.
For example, last time I needed to move my couch, I had to open the sofa bed up, pull out the mattress, put the frame back together, move the couch and then reassemble everything. Yes, it worked. No, it wasn’t any fun at all. I suspect the dog was plotting how to have me assessed for insanity.
Why, though, did I ask you to remove family, significant others and coworkers from your answers?
Many people with disabilities have complicated, difficult relationships with their families and are not close in the way necessary to receive ongoing support. While they might need the love and support relatives can give, the mere fact of dependency frames the entire situation in parent-child terms for that is the model we all know – the person needing care is the child and the person offering is the parent. Even when it comes to elderly family members, the relationship between those individuals and their children is often discussed in terms of the parent “becoming” the child. We don’t have a language or paradigm that allows for needing another family member in an ongoing, dependency based way that does not reflect an adult child relationship. and who wants to be a grown up having to accept the limitations of childhood in order to get their needs met?
People with disabilities are often more socially isolated than their TAB counterparts, find dating to be more challenging and more frequently are single as opposed to part of a romantic relationship. This means we are less likely to have significant others or spouses to lend a helping hand.
With the unemployment rate of people with disabilities at something between 60 and 75%, coworkers are often not a part of our personal landscape either.
This leaves us with our friends to turn to in times of need. In our twenties and early thirties, when many people live more care-free lives, reliance upon friends works great. They need you. You need them. Everyone gets their needs met. It’s not perfect, but things tend to work out most of the time.
Then TABs begin to pair off, acquire mortgages and kids and car payments and friends become the parents of your kid’s friends, people you share a meal or glass of wine with and those you keep tabs on via Facebook. Meanwhile people with disabilities have often not shifted to these life “milestones” and still need the friendships that sustained us in our twenties. We haven’t been able to replace those relationships with others and this creates a big void that often becomes evident logistically yet probably impacts the individual most on an emotional level. After all, you can go through an insane process to move your ridiculously heavy couch, but who will come give you that hug?