Tag Archives: Changing the World

Disability Rights California

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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.

Election 2016

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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

CripFace

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No, it’s not some unusual facial expression that people with disabilities have nor is it a reference to an outer layer or surface. Think blackface, popularized in the 19th century as a means for white actors to portray people of color in theatrical performances by using makeup to blacken their faces, as well as wearing specific costumes and adopting certain mannerisms.

The term cripface has gained popularity as a means to refer to actors without visible disabilities who play characters with visible disabilities. Obviously, it is meant as a condemnation of the practice by those who find it insulting, disempowering and marginalizing.

Hollywood has a tendency to use actors without visible disabilities to play parts calling for a visibly disabled character. The practice is so common that, except in the case of Michael J. Fox or Marley Matlin, you can more or less assume a character with a disability does not have that disability in the real world. (“Growing Up Fisher”, “Joan of Arcadia”, “Riding the Bus with My Sister”, “The Piano”, “My Left Foot” etc.) In fact, chances are you can name more characters with disabilities than you can actors with disabilities.

The reason this happens is a chicken and egg explanation. Actors with disabilities are not cast in roles, unless the character specifically has a similar disability, so they do not get a lot of work. This means they have trouble gaining enough industry admiration to be cast in roles that include a disability. Instead, established talents with name recognition are sought to play characters with disabilities.

The practice is complicated by the fact that disability is often still utilized as plot devices to elicit certain responses from the audience, based on stereotypes and reliant upon inaccurate distortions of what it means to live with a disability. There are not strong, happy characters who happen to have disabilities filling the pages of novels or wheeling across the silver screen. If disability is a characteristic, it is a noted trait given significant attention and composing a major part of the plot because no creative gains would be made by a character with a disability who is “normal.” And, of course, if you have a character with a visible disability, that disability must somehow advance the plot. Thus, there are villains with scars, paraplegics bravely shouldering the tragedy of their situation and blind lawyers who made it through law school without anyone realizing they were blind. (It’s a major plot point in “Growing Up Fisher” and also impossible.)

Interestingly, blackface is attributed with both the proliferation of harmful stereotypes and bringing African-American culture into the mainstream. More than fifty years after the practice faded from the spotlight, the stereotypes blackface perpetuated are alive and well in our society, clearly demonstrating the harm the practice caused. Yet, there is no way to know what benefits the practice may have propagated, such as influences on music.

Proponents of casting people without disabilities in roles calling for disability often argue that at least characters with disabilities raise the public awareness of the existence of disability. Whether accurate or not, mainstream society is being exposed and how can exposure be bad?

Personally, I am not a fan of cripface when it does nothing to advance an accurate portrayal of disability. There’s no reason, other than actual storyline, to make a villain scarred, unless you are relying upon a noxious stereotype about ugly meaning evil, so don’t do it. However, if a role is based on a realistic portrayal, then anyone should be able to play the role. And, of course, the opposite should hold true. An actor with a disability should be able to play a role that does not specifically call for a disability. Why can’t a wheelchair user be an extra? For that matter, why couldn’t a “Gray’s Anatomy” patient have a prosthetic limb without it being a plot point? When disability is reduced to a characteristic that some characters have and some do not, that sometimes is relevant to the plot and sometimes is not and that doesn’t get an actor included or excluded from a role, then I won’t have a problem with cripface because it will no longer be a noteworthy event. It’s only a problem when prejudice, stereotypes and bigotry hold sway over Hollywood instead of a more balanced view of another facet of human variation.

 

This entry was written as my contribution to Blogging Against Disablism Day 2015. For some interesting reading, check out what others have contributed!

Beyond What’s Comfortable

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In all the promo emails of a band I like, they talk about giving to others beyond what is easy or comfortable. Reading between the lines, I think the idea is that giving to others when it is not much effort is a superficial gesture that while helpful to the person receiving your largess, does not come from the core of you. To connect with your core – to give in a way that moves beyond yourself to put the focus on another person,– is really what it is all about. Besides, giving to others shouldn’t involve you and your ego, instead it should be about the person and their needs.

Whenever I’ve read one of their brief references to this life philosophy, I’ve thought, “That. It’s about that.” Until five minutes ago, I hadn’t gone past that reaction to think about why the sentiment speaks to me on an instinctive level while not being a universal no-brainer to the rest of the population.

I think it’s about the nature of my life and the choices I make each day. Long ago, probably before I understood the concepts, my decisions about what to do and what not to do stopped relating to the ideas of easy and difficult. For someone with a physical disability, tasks can be harder than for the non-disabled people surrounding them. Quickly you realize that if you want to be a part of the world, you need to not let tough be a deciding factor. Rather, it needs to be about want, need, can and cannot. If I want to do it and I’m capable of it, then I do it. On the other hand, if I want to do it and no effort in the world will make it possible (i.e., a blind person becoming a neurosurgeon), then I need to rethink things.

My life is full of choices about desire and possibility not ease and comfort. It is no wonder that when it comes to giving to others, I instinctively don’t think in terms of effort and ease. I make decisions about aiding others based on their need, my ability, and my desire to help, largely based on how much I care about the person. And based on what these musicians are saying, this might be where I fall short.

Should helping be limited by how much you care? When I think about it with me as the helper, I see reasons to answer yes. Cast in the role of helpee, I have reasons to support the opposite perspective.

I like to think making helping decisions based on the amount I care is about allocating resources. I’m one person with limited energy and should probably distribute that resource with care. However, careful conservancy of energy is not dictated by caring. I’ve simply used that as an easy, convenient way to make choices. Possibly I need to move beyond using the easy benchmark of caring to other more selfless factors?

Far clearer are the variables when I am cast into role of helpee. Of course total strangers should help me if they can. Time, effort, convenience and caring shouldn’t limit others. I need help (damnit), so help me. And, yes, on some level I’m that ridiculous. I suspect anyone would be if they were standing on a street corner, confronting crossing a highway off-ramp, and pretty certain of becoming road pizza if they step off the curb.

The challenge in modern society is to find a way to navigate seeing many people in need while working with limited resources.  Our decisions should be less about ourselves and more about the one we would aid.  From what I can tell, many are challenged by having to look beyond their own ease and discomfort.  Once you move past those factors, others — like allocation of resources and decisions about who — are the new hurdle.  It isn’t like once you stop thinking about comfort and ease the situation is magically clear.  It just becomes about other factors that equally call upon us to dig deep and walk a path that requires us to care about those we don’t even know.

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

What He Said

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

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

Beyond Anger’s Reputation

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Anger has a bad reputation. It is associated with such negative emotions as hate, jealousy, ridicule and disgust. It has been linked to outbursts of shouting, abuse, violence, rape and destruction. Anger is associated with ulcers, high blood pressure, and heart attack. It has no redemptive value whatsoever.

I’ve been struggling with this assumption of anger as a negative emotion. While it can lead to less healthy and helpful feelings, is getting angry entirely bad? Anger might sometimes lead to bad behavior, but is that always the case?

When TABs do something ridiculous, I feel angry. Talking about the event later, even when I use humor, my anger is apparent to many. Based on anger’s bad reputation, my response to suboptimal TAB behavior has been called into question. “Jen, you are so angry. Why is that? It can’t be good.”

Oh, really? Can’t it?

I live in a world where my value is underestimated and who I am as a person completely misconstrued on a routine basis. I am subjected to a lot of actions I dislike. Furthermore, my life is shaped by these attitudes and assumptions. (If nobody sees me as datable, then bottom line is lack of sex. I’m pissed about that.)

There is an awesome quote by Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” In other words, getting angry at a world that sees disability as ours does is not a bad thing. Getting angry at sexism, racism or homophobia is not a negative state. It is healthy to perceive societal sickness and have a negative response to it.

What is not alright is to be eaten up by the anger so that you become an angry person. It is equally undesirable for the anger to lead to health problems. Finally, if anger fuels bad behavior, it is not a good outcome. The question then becomes whether or not the anger is healthful or harmful.

My anger about society’s attitudes and behavior surrounding disability feels like a clear, cleansing presence. A person does something ignorant and on my good days, I become filled with a bright light. It burns away all the potential negative beliefs I’d otherwise internalize.

To me, the “bad” response to TAB ignorance is to think the world is right. That leaves me feeling worthless, small and useless. It feeds depression, low self-esteem and a sense of pointlessness because if they are right that I am less, what is the point of life? Sucking up resources when you give nothing positive back in return seems wrong to me.

Anger, though, clears out the emotional dark. Moreover, it fuels my desire to change the world. Anger is what makes me educate those I encounter with suboptimal beliefs. Anger keeps me trying even when it’s the fourth time in twenty-four hours that I’ve been treated like I’m three. Anger keeps me writing and talking and explaining and trying to change the world.

My passion –the thing I want to achieve above all other things in my life – is altering how society views disability. Anger keeps me trying to do this. It is motivation and feeds my hope that change will come. It doesn’t weigh me down. It lifts me up.

I can understand viewing anger negatively when the impact on the individual is harmful. How, though, is my anger doing me or the world around me harm?

A fire can burn. A fire can be a warm, comforting presence. Who is to say anger isn’t the same?