Category Archives: It Happened To Me

Disability Rights California

Posted on by
Reply

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.

Hypocrisy

Posted on by
4

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?

Public Speaking “Adventures”

Posted on by
Reply

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.

 

 

Disability I.Q. Math

Posted on by
Reply

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.

A Lukewarm Welcome

Posted on by
Reply

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

Posted on by
Reply

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

Posted on by
Reply

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

Events Previously Known As Legend

Posted on by
Reply

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

Posted on by
1

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.

Posted on by
Reply

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.