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Category Archives: Why We Do This

I am convinced that everything good in this world exists in the mind.

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If I could sum up the goal that isn’t on the list of the Great Exchange’s official goals, it’s to train people to bump up against the quirks that exist in the brain and forgive them. The more extreme cognitive differences are the easiest to notice and accept, and once you pull back from there, the subtle differences between all of us are easier to accept too. My sister, for example, does some frustrating things because her impulse control isn’t wired like the rest of ours. And by that, I mean I’m not entirely sure if it’s there. Literally. It could have been tied to the part of her brain that was removed.

One of her classmates is overtly blunt and comes across as quirky and rude. That’s because he’s Autistic and his brain’s rubric for social interaction isn’t the same as that of a non-Autistic person’s. Another classmate can’t contain himself when he gets excited. He’ll scream and shout and bang on the chairs. It’s perfectly natural, but the rest of us react to situations more quietly. We may be in the majority, but at the end of the day the rules that govern the “right” behaviors and interactions are pretty arbitrary.

Do you see where I’m going with this? If you can boil a behavioral, social, or intellectual difference down to something like brain wiring, then you are less quick to judge. There’s more than the brain, of course – the way people were raised, the experiences that line their faces, the mantras they’ve been repeating to themselves – but once you’re trained to start looking, you can build from there. The ultimate goal is that no matter who you interact with, friend or  coworker or stranger, you’ll be able to say, “The way in which your brain allows you to look at the world is fundamentally different from the way mine does, and that’s okay.”

Most of us aren’t there – I certainly am not – but at least I’ve had the privilege of growing up with someone who could teach me to start looking. I think she could teach a lot of other people to start looking, too, if only she had the chance to meet them. She’s my brain sage.

This was supposed to be a post about something I read in a Muhammad Yunus article, but I’ m really tired; and when I’m tired, I default to the mind. I find it incredibly soothing, like a bedtime story or a prayer.

Why People Donate

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For the past several weeks, I’ve been taking meditation and mindfulness classes at the Austin Zen Center. I started because of my interest in the neurological benefits of meditation, and stayed for the amazing people. It seems like every day I’m there, new ideas crop up about what mindfulness means within the context of social-emotional learning and how I can apply it to the Great Exchange. I’m especially interested in doing some research on mindfulness and Autism.

Anyway, while I came to the Zen Center prepared to experience epiphanies about the brain, myself, relationships, and our collective role as members of the same planet, I wasn’t prepared to hear the most concise explanation I’ve ever heard for why people donate to a charity or organization. One Saturday, after a meditation sitting and a Dharma Talk (a relatively nonsecular sermon about how we can become more compassionate) the Head Priest stood up to make some announcements. And at the end he asked, very humbly, for people to donate to the Zen Center if they had the means to do so. And he said something along the lines of, “I’m not saying this to get you to donate, but I’d like to point out how many people feel committed after giving a donation. And when you feel committed, you feel like you belong to that community.”

It was the softest “ask” I’ve ever heard, but the link from financial contribution to commitment to connection struck a chord with me, and I donated.

To raise money for a nonprofit, you combine a lot of storytelling with hard numbers; you’ll zoom in on one clear image of a person who was deeply impacted by your organization, and you’ll tell the story compassionately. People connect to this. You can then back your impact up with data, to prove that the one story isn’t an anomaly, and to infer that if you zoom out from there, you’ll hit many other data points that tell a similar story. That’s how we raise money, and we know this. But a more fundamental question to ask is, why does that work? And I think you’re selling the explanation short if you say that it simply appeals to a person’s emotions and moves them to act.

At the heart of the matter, I think, it’s that need to connect. People give because they want to be part of something; and if they donate to your nonprofit, then that “something” is your community. That’s really, really special. So in a way, your goal as a nonprofit organization isn’t just to help your clients heal and grow and learn; it’s to help your donors heal and grow and learn, too. Because we’re all just people and we all want to connect to each other.

At the end of a recent Thursday-night class at the Zen Center, my teacher read us this poem by Hafiz:

“Admit something:
Everyone you see, you say to them,
‘Love me.’
Of course you do not do this out loud;
Otherwise,
Someone would call the cops.
Still though, think about this,
This great pull in us to connect.
Why not become the one
Who lives with a full moon in each eye

That is always saying,
With that sweet moon
Language,
What every other eye in this world
Is dying to
Hear?”

I think it would be really revolutionary to let businesses and nonprofits start speaking that sweet moon language, too.

Pop Culture Rant: On “Glee” and Disabilities

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I have a confession to make, which probably comes as no surprise to people who follow this blog: I watch the television show “Glee.” It’s this weird paradox in which every week, every time I finish the show, I completely regret feeling uncomfortable for an hour of my life, but I can’t stop. I keep watching it every week! And I always end my viewing session feeling vicariously awkward on behalf of the poor souls who have to break into “Journey” songs every two minutes, and then I quickly erase my browser activity so nobody knows what I just did. But this isn’t about trying to absolve my guilt over watching a cheesy television show. This has to do with the representation of a minor character in the show who has Down Syndrome.

For those who are unfamiliar, this is Becky, played by the immensely talented Lauren Potter:

Now, you have to understand, this is a case in which I’m honestly questioning whether I’m being too sensitive. I would never accuse myself of being too sensitive over the “R” word or over the abundance of judgmental language we use to describe people with developmental disabilities. But here’s the thing, dear readers: I spent the better part of my college life being trained to notice patterns in popular culture that marginalize other people: races, sexes, or sexual orientation. And when I look at Becky and her role as the sidekick to “Glee’s” resident evil, Jane Lynch’s cheerleading coach Sue Sylvestor, all I can think of is this:

The buffoonish partner to the archetypical villain. The one who’s there for comic relief, who says the funny lines, who makes you feel that unlike the villain, they’re not some evil mastermind; they’re just a little lost. And comical, of course, always.

Now, I’m a rabid fan of Jane Lynch, and her recent commencement speech at my alma mater brought me to tears of nostalgia. Seriously, I love this woman. I am also aware of Jane Lynch and Lauren Potter’s incredible voice in the disability awareness campaign. And I know that taking offense to “Glee” is a trivial crime, so be aware of all of this as I continue.

I just do not like the way the character Becky is portrayed. Plain and simple. I think she’s cartoonish, two-dimensional, and there for an easy laugh. In a recent episode I watched as her character sat in a hotel room with a few of the primary characters, as they felt disappointment over not being somewhere better, as she demanded beer and condoms, and the implication was, “laugh at this person for demanding condoms so she can presumably sleep with one of the main characters, who will, of course, reject her.” And I’m sorry, but that just isn’t funny. I’m sorry, but using a disabled person’s sexuality for a cheap laugh will never be okay with me. I’m sorry, but the intent was wrong: it wasn’t to point out the disabled person’s real, human feelings; it was to make an awkward, uncomfortable situation even more laughably uncomfortable.

If you want to talk about the capacity to which an intellectually disabled person feels fully-functional adult emotions, that’s one thing. If you want to talk about the moral implications of giving alcohol or condoms to an intellectually disabled person, that warrants an even longer conversation. But to make light of it and then move on is inexcusable.

And I know it’s not this show’s intent to write off a disabled person for comedic relief; in fact, I think that in their bizarre way, “Glee” is trying to draw a “this person is just like me” parallel. But it’s going about it all wrong, and I think at the end of the day, all they’re doing is solidifying the perception that society already has about teens or adults with disabilities. And I’m not sure if this is too much of a tangent, but full disclosure: I don’t think they’re doing gay people any good, either, when they lump gay storylines into the same storyline as a student sleeping with a teacher.

It used to be my goal to make movies and television shows (this was a long time ago) for one simple reason: to create characters that are different from the ones we see every day. At the time, for me, this was especially true of women: I yearned to see female characters onscreen that didn’t portray the archetypical romantic or weak stereotype.

But now? Now that I’m focused on disabilities? Let’s put it this way: I was concerned for women, but I’m pissed off on behalf of disabled people. If our disabled people aren’t buffoons, or if they aren’t a way of proving the main character’s “humanity,” or if they aren’t Oscar-bait, then they do not exist.

But guess what? They exist. They are our Austistic brothers, our aunts with Down Syndrome, or, in my case, our beautiful and capable brain-damaged sisters. And unlike “Glee,” high school wasn’t a laughable time for my sister. My parents had to move out of state just to find a special education program that wouldn’t amount to making my sister wait tables in the cafeteria for her able-bodied and able-minded peers. Before my sister switched schools, she was kept in a room with the behaviorally challenged kids (which she wasn’t) where they hit her (which made her wonder what she had done wrong).

This is the story that remains untold. This is high school for millions of disabled children around the world. And to minimize that by telling the story of one high school where the disabled girl is the laughable cartoon sidekick to the most evil woman in the school? That’s not okay. There simply aren’t enough stories out there to counterbalance this one. There simply isn’t a reason to believe that the stereotype portrayed in “Glee” isn’t true.

Impact Measurement, Part 2: Questions We Can Ask About Kony 2012

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[I know, I promised something else for the second part of this “series,” but Kony 2012 is a phenomenon that warrants discussion. We’ll return to our regularly scheduled program soon.]

Before we begin, if you watched the ubiquitous Kony 2012 video and it inspired you to donate to the cause, that’s great! I highly recommend you don’t donate to Invisible Children unless you’re in the mood for funding Self-Congratulatory Film #12. Grant Oyston over at Visible Children did some research and came up with a list of great nonprofits that operate in Central Africa, all of which have received more trustworthy ratings from Charity Navigator than IC has.

Kony 2012, the internet campaign that rightfully denounces Ugandan guerrilla group leader Joseph Kony, is a great opportunity to ask questions about “awareness generation” nonprofits and decide for ourselves how we feel about their overall impact. I suppose I already made my stance on the issue clear in the first paragraph; but I’m not necessarily out to convince people that Invisible Children is a sham. This post will certainly not be without bias, but no matter where we stand, I want us to ask ourselves the following questions (some of which have no answers):

  • What are the implications of lumping such an important issue into a frantically consumed, frantically discarded viral culture? Kony 2012, by its very nature, is a meme–the social activism equivalent of sharing a picture of a cat who uses poor grammar. How does this compare, impact-wise, to the slow, sustained growth of knowledge and awareness? Will those who were driven to donate to the cause do so again in a month? In six months? In a year? In five years?
  • Does a campaign like this elicit widespread action? By “widespread action,” I am not referring to Tweeting, Facebooking, or sharing a video on your blog. I’m curious, in particular, about the well-intentioned souls who claim to have sobbed throughout the video. What did they do once they dried their tears? Did they call or write to a political figure? Did they do more research? Did they donate to an in-the-field organization? On a similar note:
  • Does sharing a video about a cause create a false sense of empowerment? Spreading awareness is so, so important. But don’t our responsibilities as concerned human beings extend beyond that? I could talk about disability rights until my face turns blue, and I certainly will; but I am not expecting my words to create systemic change. I am expecting my actions to do so. My words are just a conduit for meaningful information, so people can fundamentally understand how and why they should take the next step.
  • What is the strategy behind equating one figure with an incredibly complex issue? This is a great opportunity for me to break out the concept of metonymy, which I learned about when I was a student at the Northwest Institute for Social Change. Metonymy is the idea of using a single, tangible person or symbol to represent a large concept. It’s a psychological trick that allows us to grasp the intangible; and because of this, it’s a powerful practice and it’s certainly a strategy that all nonprofits should consider as they communicate their message. The problem emerges when metonymy is a stand-alone strategy. My beautiful roommate Jen spent time in Uganda building friendships and conducting interviews with female refugees. She is absolutely livid with Invisible Children’s consistently over-exaggerated claims about the LRA. Admittedly, I don’t know much about the bigger picture of what’s going on in Uganda, but watching the Kony video certainly didn’t help.
  • How meaningful is it that the majority of Invisible Children’s budget is funneled to overhead and media production? Despite their refusal to report certain information to the Better Business Bureau, Invisible Children’s financials are pretty clear. This is not an aid organization; it is a film company. As someone who spent a few years in the film industry trying to make social awareness films, I wholeheartedly support the goal of using film and popular culture as a mainline to our consciousness. For this, I applaud Invisible Children. I hope they will always continue to raise awareness about important issues in Uganda; but I do think it is their responsibility, as an influential media organization, to give people a clear picture of the nonprofits people can support when they want to take action.
And finally:
  • Why is it that the most successful nonprofits are almost universally the ones with the best marketing, and how can we use this knowledge responsibly? If there’s one thing Kony 2012 can teach all nonprofit professionals, it’s the overwhelming success of smart marketing. Because that’s what this campaign is: smart. Brilliant, even. So, study what works for Invisible Children, study it comprehensively, and use it. Use social media, use metonymy, use powerful storytelling. Find a great filmmaker in your area and make a film. Do whatever it takes to get the word out about your cause without lying, misleading, or manipulating. But do not, do not, do not let it end there. That’s not why we’re doing this, and any nonprofit worth its salt knows that.

Study: Many Adults With Disabilities Do Nothing All Day

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Yesterday I discovered an unsettling but not unsurprising study about adults with disabilities. A survey of about 800 siblings of adults with disabilities reveals that about 13% of disabled adults have nothing to do with their time–no job, no educational activity, and no form of recreation.

Now, numbers can be misleading and our brains are trained to interpret data in a certain way. So if your first reaction to this information was to say, “13%? That’s not so bad!” then I don’t fault you. To be honest, that was my first impulse too.

However, 13% of 800 is 104 people. That’s a significant number. If the percentage holds true across the board (and it probably doesn’t–given the demographic of the siblings surveyed, the percentage is most likely a lot higher), then here’s the breakdown:

  • There are 6.2 to 7.5 million people with cognitive disabilities in the United States, so:
  • There are 800,600 to 975,000 disabled adults just sitting around all day, unenriched, unfulfilled, and most likely quite depressed.

Again, I’d wager to guess that the numbers are even more dire than these findings reveal. The siblings who were surveyed were wealthier and more educated than the general population as a whole, meaning they’re more likely to have the means to find outlets for their disabled loved ones.

But even having the means won’t do a damn thing if the outlets don’t exist in the first place. My parents are pitch-perfect examples of people who provide their disabled daughter with a happy, fulfilling life–but even they worry about what Martha is going to do with her time when she graduates from the Transition House (part of her local special education program–instead of going to school all day, she goes to a house for disabled students up to the age of 21 that teaches basic life skills). Although Martha is happy and social and would be a wonderful asset to any organization, her cognitive abilities are such that even Goodwill can’t offer her a job. Finding recreational, social, and educational opportunities for disabled adults is a full-time job (usually falling to parents or other family members) that takes tenacity and creativity.

I see this as a fundamental human rights issue. The Declaration of Independence’s “right to the pursuit of happiness” is one of the most influential phrases in U.S. history. Anyone who has ever felt isolated or bored can tell you that an absence of meaning and purpose is one of the most horrible, defeating, and depressing feelings in the world. But our society is simply not set up in a way that allows many disabled adults to pursue happiness.

There is a disabled man who sits in front of my apartment complex’s mailboxes all day, every day. He is always there unless it’s too hot or too cold, at which point I imagine he sits in his apartment. You’d be amazed at the degree to which he lights up every time I’m out walking my dog; I always say hi to him and ask if he wants to pet the dog. I’ve never seen anyone else in my apartment complex speak to him.

Widespread change is going to take a lot of effort; in the meantime, if you pass a person like that man every day, just have a conversation with him. It could be the most stimulating thing he does all day.

A Healthy Family

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The Huffington Post’s article about abuse towards disabled adults hit me hard in the stomach. Before citing some absolutely appalling stories and details, the article reports that disabled adults are at a much higher risk of being physically and sexually abused than non-disabled adults.

This hurts. It hurts every single one of us. Our health as a family, a society, and a planet is directly tied  to the way we treat our vulnerable or misunderstood community members. If a person is fragile physically, mentally or socially, the healthiest possible human grouping will take the best possible care of them. The weakest possible human grouping will take advantage of them. If someone mistreats a disabled person, it’s not just a problem; it’s a symptom of societal disease.

I truly believe that speaking to a person with a social or cognitive disability, then becoming their friend, then learning to love them as a contributing member of society will impact so much more than the rights of the disabled. Once your brain is open to compassionate understanding, it will affect the way you treat everyone else in your network, disabled or not. A person with a disability is one of the best possible candidates for instilling this sense of compassion.

The tenet that increased interaction with cognitively disabled people will lead to greater societal compassion is one of the more idealistic or “visionary” philosophies behind The Great Exchange (as opposed to “practical”), but it runs deep. It will be a long time before something like that can be measured. But there it is, tucked away, driving the more practical in’s and out’s. I guess I just take this one on faith.

A Labor of Love

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I spent awhile thinking about how this should begin. Should I just start spilling out all of the ideas that are scattered like constellations throughout my Google Docs? Should I list my heros in the Social Entrepreneurship Hall of Fame (Mary Gordon, founder of Roots of Empathy, and Muhammad Yunus, in case you’re wondering) and fade into the ways in which I think my ideas could ultimately multiply and take off like theirs did? Should I just hit you with the mission statement of my nascent little startup, The Great Exchange? Let’s be honest; I’ve thought about that mission statement a lot, and I’d love to share it.

But I probably shouldn’t do any of those things. I think all organizations, causes, art projects and entrepreneurial endeavors begin with a narrative that’s a lot simpler than that. So here’s mine:

Hi. I’m Meg, and that’s my little sister Martha wearing the blue overalls. I’m a little older now, and so is she. Here are some things you can tell from this photograph: in many respects, we display the sisterly dynamic you would expect to encounter. We adore each other, and I’m fiercely protective of her. In fact, “protective” is an understatement; at many points throughout my life, Martha has shown me glimpses of what it must be like to have children, an encounter with thick and nearly tangible love combined with a selfless but frantic sense of anxiety. It’s a truly profound feeling–not happy or sad, but just big.

Here are some things the picture doesn’t reveal: a few months after this photograph, Martha will be in a hospital bed, head shaved, scar crawling across her scalp like one of those giant centipedes in the Amazon Rain Forest. For the next 17 years after that, she will encounter a system of special education programs and classes that vary wildly in quality. And today, she’ll be 20, and my Mom, Dad, older brother and I will be initiating a series of conversations about how to plan for her future. Martha grew up brain-damaged and cognitively disabled, and because of this, she will never be alone.

And because of this–well, this combined with a fiery passion for entrepreneurship, an aversion to having a boss, and a creative drive that is best funneled into building large projects and systems–I’m starting a nonprofit called The Great Exchange. So here, then, what I’ve been waiting for, the mission statement:

The Great Exchange promotes self-advocacy among intellectually disabled adults by setting up pathways for them to network with nonprofits around Austin. In exchange for team-based volunteer work at each nonprofit, the host site will provide a list of ways they plan on fostering inclusion in their workplace or community. 

I just felt a little thrill, after pasting that from my web site. So what makes me qualified to run a nonprofit when I’m only 26 but, moreover, when it seems that everyone and their brother is taking advantage of the troubled economy by starting up well-intentioned but barely functioning organizations and duplicating one another’s efforts in the sloppiest of fashions? Well, hopefully this blog will get to that someday, but I think my most important credential is this one:

I absolutely adore making mistakes.

I’m hoping to use this blog as a means of documenting these mistakes, the lessons I learn, the triumphs the Great Exchange experiences, and to make my thought process as transparent as possible as I carefully determine how to move forward. I hope anyone following this journey can use the ensuing ups and downs as a resource as they build their own projects and write their own love stories.

So without further delay, my love story.