About Jen

After acquiring a degree from Vassar College in psychology, I moved to Western Mass where I ran a peer mentoring network for disabled college students as well as activism and organizing around disability issues. I also conducted research on disabled women’s body image. An Upstate New York native, I eventually followed my heliotropic nature to the sun of Southern California. I divide my time between writing (disability fiction and essays) along with moderating San Diego Bisexual Forum which is one of the oldest groups of its kind in the country. In my off hours I can often be found in my neighborhood live music venue enjoying our local talent.

What Is Help?

Here is some food for thought. Uncertain what street I am on, I will stop and ask someone. This is categorized as asking for help. Uncertain about what street they are on, a sighted person looks up and reads the street sign. We do not call this help.

A street sign does not magically appear suspended above our heads. It was ordered, made and hung there to aid people navigationally. However, if you can read it with your eyes, the effort behind and purpose for the sign’s presence is stripped away. You are functioning independently by reading information that is just there.

Why?

Disability Rights California

In January of 2014, a friend said, “Hey, maybe you should apply to be on this board I’m on.” The moment I discovered what it meant to be on the board of Disability rights California http://www.disabilityrightsca.org/, I knew this was the thing I’d been aiming to do my entire life, even if I didn’t know it existed. It was just that right for me.

What made it so perfect? Most of my life, I’ve changed how people thought about disability one person at a time. It was boots-on-the-ground type work, where I was up close and personal with the lives impacted, but I could only change small things, one at a time. Being on a board meant determining broader policies that could change the lives of people I would never meet, advancing the rights of individuals with disabilities on a scale only ever in my dreams.

For two-and-a-half years, I have been on DRC’s board, looking at the big picture. Exposure to other disabilities has increased my overall disability knowledge, but that isn’t really where I’ve expanded my skills. I’ve learned I can look at a balance sheet and more or less understand it. I’ve discovered my inner data geek. I’ve even learned I am good at press interviews. Weirdly good at them.

I tell you all this for a couple of reasons. First, if you are a person with a disability, looking for something meaningful to do with your life, check out your state’s Protection and Advocacy organization, which is the role DRC fills in California. Unlike most other volunteer opportunities, your disability will not get you turned away. Instead, your experience will be valued. Reasonable accommodations, given because you expressed your need instead of fighting a battle, will feel almost luxurious. Finding out that a data geek lurks in your soul is the cheery on the cake.

Second, in my time on the board, I’ve learned nobody knows about Protection and Advocacy organizations (P&A), what they do, or why they exist. Until I joined the board, I didn’t know about P&As. They are mandated by federal statute to fight for the rights of people with disabilities in various categories. The first such statute came about because of ground-breaking work by, believe it or not, Geraldo Rivera back in the 1970s when he smuggled a camera into Willowbrook State School on Staton Island. He captured the country’s attention and outrage when he showed the conditions people with intellectual and developmental disabilities were forced to endure.  As a direct result of this story, the federal government establish the P&A system. Over the years, further funding has been designated to work with other disability populations and on specific topics, such as the Protection and Advocacy for Voting Access.

DRC and other P&As do everything from offering information and referrals to filing individual and class action lawsuits. The ultimate goal is to allow people with disabilities to live, work and play where and how they wish. It’s a tall order carried out by dedicated people every day. I’m lucky enough to be on the board and help decide what the future should look like for people with disabilities.

In January of 2014, a friend said, “Hey, maybe you should apply to be on this board I’m on.” The moment I discovered what it meant to be on the board of Disability rights California http://www.disabilityrightsca.org/, I knew this was the thing I’d been aiming for my entire life, even if I didn’t know it existed. It was just that right for me.

What made it so perfect? Most of my life, I’ve changed how people thought about disability one person at a time. It was boots-on-the-ground type work, where I was up close and personal with the lives impacted, but I could only change small things, one at a time. Being on a board meant determining broader policies that could change the lives of people I would never meet,advancing the rights of individuals with disabilities on a scale only ever in my dreams.

In case you somehow managed to miss it, I love metaphors and similes a wee bit more than is reasonable. In the world of non-profit activism, a board sets a trip’s destination and gives basic parameters, like method of transportation, how much it should cost and how long it should take. An Executive Director takes those “marching orders” and decides the departure time, arrival time, route to take and brings the plan to life. Staff packs the suitcases, fuels the trucks, gets the supplies and makes the trip really happen.

For two-and-a-half years, I have been on DRC’s board, lookking at the big picture. Exposure to other disabilities has increased my overall disability knowledge, but that isn’t really where I’ve expanded my skills. I’ve learned I can look at a balance sheet and more or less understand it. I’ve discovered my inner data geek. I’ve even learned I am good at press interviews. Weirdly good at them.

I tell you all this for a couple of reasons. First, if you are a person with a disability, looking for something meaningful to do with your life, check out your state’s Protection and Advocacy organization, which is the role DRC fills in California. Unlike most other volunteer opportunities, your disability will not get you turned away. Instead, your experience will be valued. Reasonable acccommodations, given because you expressed your need instead of fighting a battle, will feel almost luxurious. Finding out that a data geek llerks in your soul is the cheery on the cake.

Second, in my time on the board, I”ve learned nobody knows about Protection and Advocacy organizations (P&A), what they do, or why they exxist. Until I joined the board, I didn’t know about P&As. They are mandated by federal statute to fight for the rights of people with disabilities in various categories. The first such statute came about because of ground-breaking work by, believe it or not, Geraldo Rivera back in the 1970s when he smuggled a camera into Willowbrook State School on Staton Island. He captured the country’s attention and outrage when he showed the conditions people with intellectual disabilities were forced to endure.  As a direct result of this story, the federal government establish the P&A system. Over the years, further funding has been designated to work with other disability populaations and on specific topics, such as the Protection and Advocacy for Voting Access.

DRC and other P&As do everything from offering information and referrals to filing individual and class action lawsuits. The ultimate goal is to allow people with disabilities to live, work and play where they wish. It’s a tall order carried out by dedicated people every day. I’m lucky enough to be on the board and help decide what the future should look like for people with disabilities.

What Vulnerable Implies

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

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

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

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

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

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

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

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

Hypocrisy

I probably just caused the majority of people who read my Facebook feed to roll their eyes. I posted this:

Every undescribed visual posted as part of a horrified response to the presidential election results makes me more and more upset.

What I wanted to add, and valiantly refrained, was: Bemoaning the triumph of bigotry and hate while posting material inaccessible to some people with disabilities shows a degree of hypocrisy those doing it might wish to consider.

A few who routinely engage in this practice even liked my post. Liked it.

The bright light is the one person who reposted it to her wall and has since been describing the images she posts. One person at a time, right?

Election 2016

Rarely if ever have I posted something overtly political, but this is too long and complicated for Facebook and I believe it needs to be said.

Millions of us are shocked and heart-broken over the results of the U.S. presidential election. The sentiment expressed by many is that hate triumphed over good and misogyny, racism and bigotry ruled the day. Characterizations of the winning side have been harsh, angry and negative.

Guess what? Those who support Trump would use equally negative, hateful words to describe us. They believe we are a bunch of selfish, godless deviants determined to destroy this country. When our negativity comes up against theirs, what happens is a deepening of the divide that exists in the social fabric of our country.

Michelle Obama said, “When they go low, we go high.” It is time for all of us to pick our words carefully, to use language that is not laden with judgment and loathing, and to try and find our common ground.

People worry about what Trump winning teaches our children and I think that’s a valid concern. What does our reaction to his victory teach them?

The question repeated over and over is this: How did we not see this coming? Blaming it on pundits and pollsters, politicos and journalists misses the larger lesson that will be hard for us to swallow. We weren’t listening. A large segment of American society was trying to tell us something about what it means to be them, to articulate an experience foreign to our own. Not only did we not hear them, but we often silenced them.  Instead of practicing tolerance, instead of trying to understand, instead of meeting them on their own territory, we blocked them out, shot them down and shut them up.

When you are fighting with your sibling, friend or spouse and neither of you are listening to each other, what happens? The conflict doesn’t get resolved, people’s feelings get hurt and everyone suffers.

We lost. A silenced group of people came out, exercised their right to choose our country’s destiny and finally they were heard. We can either respond with the same old loaded language that got us here in the first place or we can realize we missed something incredibly important and significant and start to figure out what it is and what common ground we can share.

Yes, they might believe things that are misogynistic, racist and bigoted. They may want to purge the country of anyone who isn’t white, able-bodied and Christian. Their beliefs scare me spitless. Increases in suicides, violence against marginalized group members and prevalence of hate-based graffiti leave me cold down to the marrow of my bones. Tolerance, though, is not about how we treat those who agree with us. It’s about how we treat those who do not agree with us, who believe things that make us sick. Fight policies that engender racism, misogyny and bigotry. Demonstrate basic respect for those who believe these things to be right. I think the expression is, “Hate the sin, not the sinner.”

Mourn our loss. Cry, scream and be devastated. Hug your friends, find community and find your strength. Then, take a moment to consider how you would want the “other side” to behave if Secretary Clinton had won and do that. Not what you think they would have done. What you would have wanted them to do. “Go high.”

I found this article to do a great job of offering context and articulating a path forward. Knowing the pop culture references is not necessary to understand the author’s points.

http://www.stonekettle.com/2016/11/bug-hunt.html

Half A Glass

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”

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

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 

Disability I.Q. Math

While I will argue with my last breath that the social isolation I experience is a factor of other’s attitudes and beliefs, I internally constantly re-examine this. Unfortunately, the world feeds this constant search for an explanation with my actions, words and shortcomings at its center.  (Are you giving in to your shyness?  Are you seeking people out?  Are you self-absorbed?  Are you no fun to be around?  Are you unclean?)  Seeking fault in myself is a habit that has reached the level of reflex.

It’s a bad habit that keeps me constantly doubting myself, allowing those around me to remain blameless.  It is an internal dialogue that tears me down and I can never really like myself because I am forever finding fault with myself.

This maladaptive tendency was highlighted recently.  First, I attended a group gathering with a friend, which was described in the previous two posts.  Then, I went off and spent time with a gaggle of bisexual people coming together for a wWite House event.  Typically, with group gatherings, I find myself hanging out with my dog as others chat and laugh.  There are those who make an effort, but it is an obvious effort as opposed to genuine desire to spend time with me.

This time, the proportions were all off.  The alone moments still occurred, but moments of connection and social inclusion were more numerous.  Guess what?  I had fun.  There was, gasp, social ease, which I quickly learned was a state I rarely have ever experienced.

Over the course of about 48 hours, the reason became clear.  The number of people in the group who knew about disability was higher than the usual.  I heard, more than once, “Oh, my blind friend ….”  I heard, “Yeah, so-and-so uses a wheelchair….”  There was even, “At the confrence we organize, we provide accommodations such as….”  It was a group of people with an average disability IQ far higher than anything I’ve encountered, unless I was with a group of people with disabilities.

So, maybe it is simply about how many people know how much.  Measure the disability IQ of the individuals constituting a group and it will predict my experience.  If that is in fact true, then it cannot be about me.  It is about  math.

Changing Perspectives

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.