The Art and Grace of Battling Multiple Sclerosis

Twenty-five years ago, my aunt Marjorie was diagnosed with multiple sclerosis.

In my extended family, we don't talk often. We don't know about each other's day-to-day. Reunions are few and far between. There is not a lot of drama, and we like to keep conversations comfortable. But the one thing I know for sure: when shit hits the fan, we are here for each other, and we are a witness to each other's lives.

This weekend, I'll be supporting Marjorie and other people diagnosed with MS in the annual "Walk MS" fundraising walk along the Chicago lakefront, where I spent my college years. $$$ PLEASE MAKE A DONATION, if you can. $$$

I am so proud to have my aunt Marj in my life, because despite any superficial interactions we've had over the years, there is a depth of love and appreciation. And a genuine feeling of being there. (Thanks, Marj.)

Over the years, she has endured impaired vision, chronic pain, limited mobility, imbalance, fatigue, physical weakness, broken bones and countless other symptoms, caused by damage to her nervous system. (Not to mention the chemotherapy treatments and experimental medicines.) But she has never displayed a shattered spirit. I am in awe of her optimism, positivity, perspective and humor.

Her story is one of many. And with setbacks come great successes: a loving husband, a beautiful son, a successful career, wonderful friends. 

Back in college, I used to house-sit for aunt Marj, who lives in the Chicago suburbs, while she was out of town. A memory that stands out: she has a magnet on her fridge that says "Never never never give up."

I am reminded of other people like her who have faced illness and never gave up. I know I take my health for granted, and I have to pause to remember that it can all be taken away, with one diagnosis.

In honor of my aunt Marj, who is a writer and singer and mother and sister and wife and general creator and nurturer of awesomeness, I wanted to showcase some creative ways of raising awareness about this life-altering disease.

Oh, and P.S.: Fuck you, multiple sclerosis.

Art by Kirsty Stevens.

Art by Kirsty Stevens.

UK-based artist Kirsty Stevens uses the shapes of harmful lesions that are visible on MRI scans of her brain to etch designs onto glass, paper, wood, fabric and other surfaces. (See more at Vanilla Ink Studios.

Art by Elizabeth Jameson.

Art by Elizabeth Jameson.

Similarly, Elizabeth Jameson uses her MRI scans to inspire work in etchings, multimedia and textiles. (See her portfolio.)

Photo via "Being".

Photo via "Being".

"Being" is a film about a young boy, named Buddy, who is a caretaker for his mother, who has multiple sclerosis. He is bullied at school and finds solace in music from the 1960s. (Learn more about the project.)

Photo by  Patricia Lay-Dorsey .  

After she was diagnosed with MS at age 45, Patricia Lay-Dorsey started taking self-portraits, to process her experience. "Art has always been my most effective therapy," she said. (See more of her photographer series, "Falling Into Place".)

"Gallop," a film directed by BAFTA-nominated film director Michael Pearce, shows the life-changing impact of a diagnosis with MS, as told through a love story between two young adults. The film was launched by Shift.ms, a web-based charity.

Thought Sort, another project by Shift.ms, is an online tool that helps people recognize, manage and adapt negative emotions caused by negative thoughts, using methods of cognitive behavioral therapy (CBT).

Advertising agency Grey Australia created a campaign, "This Bike Has MS," to demonstrate the unpredictable symptoms of multiple sclerosis, using the metaphor of a misaligned bicycle.

This is my sixth blog post in a series for #The100DayProject, a project by Elle Luna. I'm naming it the #100Days ofBenevolent: an attempt to kickstart my daily blogging habit, which has been idle for years.

 

Snaps for Social Impact

I've been pretty obsessed with Snapchat lately, as you can see here and here.

Clearly, the augmented reality video messaging app isn't just for kids anymore. I started digging around and found some clever ways that nonprofit and social impact marketers are using the platform to connect audiences to their mission in meaningful ways.

Laurie Keith, director of National Media Accounts at The Ad Council, launched a partnership on the platform, called "I am a witness," to combat cyber bullying. Snapchat influencers and fans told their stories and pledged their support to stop bullying, using custom filters. 

Photo via Laurie Keith.

Photo via Laurie Keith.

Disease-fighting organization (RED) offered three special photo filters on World AIDS Day. Every time a user snapped with a (RED) filter, the Bill and Melinda Gates Foundation donated $3 to the organization’s crusade against AIDS.

Image via re/code.

Image via re/code.

WWF in Denmark brought attention to crisis of animal extinction with its “Don’t let this be my #lastselfie” filter on close-up photos of endangered species. The disappearing nature of the photos on Snapchat mirrors the urgency of real life.

Similarly, nonprofit OndAzul of Brazil shared snaps to educate viewers about environmental disasters.

For its #BringBackOurChildhood campaign, UNICEF teamed up with Snapchat artists and influencers, like Shaun McBride, a.k.a. Shonduras, to send out snaps based on drawings done by children displaced by the violence of terrorist group Boko Haram in northeast Nigeria.

On a lighter note, as a fun and ridiculous way to engage their young community, DoSomething.org used a combination of Snapchat and text messaging to get followers to sign up for the Would You Rather financial literacy campaign.

Photo via Mashable.

Photo via Mashable.

Outside of the nonprofit world, Snapchat is used to raise awareness about important global affairs. Panorama, BBC's flagship current affairs program, was a Shorty Award finalist for its Snapchat "day-by-day digital documentary," covering the refugee crisis and migrant journey from the Greek islands into Western Europe.

Another news organization, National Geographic, didn't quite get the memo about how Snapchat works...and created a series of print ads showcasing Snapchat's Face Swap feature, in hopes of delivering the message to "swap prejudice for knowledge." The campaign was supposed to inspire compassion and empathy. I don't know about you, but the creep factor was high for me on this one.

Image via PSFK.

Image via PSFK.

This is my fifth blog post in a series for #The100DayProject, a project by Elle Luna. I'm naming it the #100Days ofBenevolent: an attempt to kickstart my daily blogging habit, which has been idle for years.

The Color of Love: Showing Support for Marriage Equality

Even if you had no idea about today's historic events at the U.S. Supreme Court, you'd be blind not to notice a movement swelling online. In the nation's capital, oral arguments began yesterday on California's Prop. 8, which amended the state Constitution to ban the right for same-sex couples to marry, and the federal Defense of Marriage Act, which has limited the definition of marriage as between a man and a woman since 1996. Rulings are expected by the end of June.

In the midst of the hearings, marriage equality activists have taken to the streets--and to the, er, tweets--to make their voice heard. People across Facebook and Twitter have switched their profile pictures to become a red square with a pink equal sign--a variation of the blue-and-yellow logo of the Human Rights Campaign, which advocates for lesbian, gay, bisexual and transgender equal rights.

The color takeover, which launched in the early afternoon on Monday, was led by Anastasia Khoo, director of marketing for the HRC.

"By harnessing the passion that equality supporters feel for the freedom of loving and committed couples to marry," she told Yahoo! News, "the internet is awash in a sea of red—the color of love.”

Facebook users shared the HRC's red logo more than 100,000 times as of 4:00 p.m. on Tuesday, according to the nonprofit's Tumblr blog. The pixels continue to spread.

STAR POWER

The logo got a significant bump on Tuesday morning from a Facebook post by the ever-popular George Takei. The Star Trek actor wrote, "For those friends wondering, this special 'red' equality symbol signifies that marriage equality really is all about love. Thanks to the Human Rights Campaign for this effort. Please consider changing your profile today in support--esp if you are a straight ally."  As of Tuesday night, his status update had more than 77,000 likes and 39,000 shares.

Other high-profile personalities who participated in the profile pic swap included celebrities like Sophia Bush and Lance Bass. Superstar Beyoncé showed solidarity in her own way, posting a handwritten note on her Facebook page that said, "If you like it, you should be able to put a ring on it. #WeWillUniteForMarriageEquality!"

Politicians painted the virtual town red, too, with Twitter avatar replacements made by Rep. Alan Lowenthal and Rep. Dan Kildee, plus countless other lawmakers.

While the symbol originated in earnest, the Internet's twisted sense of humor quickly fueled spin-off parodies, including red-tinted images of cultural fads, from bacon strips to Grumpy Cat, and Bilbo Baggins to Paula Deen.

This certainly isn't the first campaign to go viral. Similar messages spread when Congress tried to pass the Stop Online Piracy Act (SOPA) and Protect IP Act (PIPA), which caused people to literally "blackout" the Internet. And you could write countless stories about the memes and hashtags that developed out of the Arab Spring and Occupy movements.

PASSIVE ACTIVISM?

Skeptics argue that social media-driven campaigns like these do little to make a real impact. A writer for VICE magazine put it bluntly: "The Red Marriage Equality Sign on Your Facebook Profile Is Completely Useless." He argues that it would be more effective to protest and get arrested, write a letter to your senator demanding marriage rights for everyone, or debate the issue with conservative family and friends to try to change their opinion on the subject.

No matter whether the logo ends up changing law, one thing is for sure: people are seeing red. And wondering how to do something about it.

New Website Collects Ideas to Improve the World

rippleeffect Have you ever wanted to see current or  potential  innovations for poverty or the environment without having to do a lot of researching or reading?  Have you ever thought of an idea and wanted to tell the world about it and get  feedback?  How it could be different was founded for these purposes - to enable people to easily see, share, and suggest ideas in different categories and be like a “Wikipedia for ideas.” It features both abridged ideas from the world and from our community to make it easy to learn about and spread ideas.

My name is Jaya and I am one of the co-founders of How it could be different.  The idea for How it could be different was developed from my own personal desire to want to learn and spread ideas I thought were innovative and potential solutions to issues in the world.  In 2005, I visited a developing country, India, for the first time.  Though I had known about poverty, it shocked me to be confronted by elderly with missing limbs and child beggars on the street.  I wondered:  What were the best ways to alleviate poverty?  Why did countries have different standards of living? What was the best nonprofit/charity to donate to?  What were ways governments could best aid their citizens?  I began to keep lists of ideas and became interested in discovering and learning about what ideas were out there to be potential solutions and improvements.

As I began to keep these lists, I wondered if there was a website that I could go to and easily see great ideas without having to read and search for them.  There is so much information about innovation in the world – research papers, newspaper and magazine articles, websites, TED talks, think tank policy briefs, books – and no website to really easily access this information.  I believe one of the most useful websites on the internet is Wikipedia because it makes information easy to find.  With this in mind, I decided to create How it could be different because I believe there is a need for the world to have a website where ideas for improvement can be collected and easily accessed.   In addition, on How it could be different, people can vote for ideas they agree with, allowing us to show which ideas are most supported by the public.  With increased funding  for more development and staff, we hope to be able to also add links for people to easily advocate for ideas from the site.

So, please join us at How it could be different to be able to easily see, share, and suggest ideas.  We are also posting an “Idea of the Day” on Facebook and Twitter and would love to see you there as well.  In addition, please get in touch if you would be interested to join our team and help us continue to collect, build awareness of and inspire ideas for improvement.

Telling the Story of Jyoti Singh Pandey

Photo by Ramesh Lalwani. Her name is Jyoti Singh Pandey. The 23-year-old female medical student was brutally raped by six men on a private bus on her way back from watching a movie in New Delhi on December 16. She died from her injuries two weeks later in a Singapore hospital.

The crime has sent India and the world into a fury of protests and debates about the safety and security of women--and social justice, in general. Some are calling for tougher laws and enforcement; others demand police reform and surveillance. The news media is both pointing fingers and accepting the blame for under-reporting sex crimes. In the midst of the international wake-up call, five men have been charged with Jyoti's abduction, gang rape and murder.

As gut-wrenching as it is, Jyoti's case is not unique. TIME magazine reminds us: "As the five accused were driven to court on Monday, for instance, a 16-year-old girl in the northern city of Allahabad was in critical condition after being set on fire by a boy who allegedly attempted to rape her on Saturday. That same day in Delhi, the body of a 21-year-old woman was found; her father says she was gang-raped and murdered on her way home from work the previous evening."

How are we supposed to make sense of these heinous crimes - and all the other countless incidents like it? You could start by the telling the stories over and over again, until someone finally listens. Here are a few examples:

Photo by Reuters via International Business Times.

SCULPTURE: Indian sand artist Sudarshan Patnaik created a sand sculpture with the words "We Want Justice," displayed on a beach in the eastern Indian state of Odisha.

FILM: The city of Kolkata hosted the OUR LIVES...TO LIVE Film Festival on January 4-6, calling attention to the growing global phenomena of gender crimes and violence. It was organized by the International Association of Women in Radio and Television India Chapter, in association with Swayam, a local women’s rights organization. The screenings covered stories beyond India, too. The featured film, for example, was the Academy Award-winning "Saving Face," a documentary about victims of brutal acid attacks in Pakistan. Other stories shown included "Facing Mirrors," about a transgender girl fleeing Iran to have surgery with the help of a female taxi driver, and "Orchids: My Intersex Adventure," about an Australian woman’s discovery of intersexuality. Since the multi-city film festival’s launch in November, other screenings and panel discussions have been held in Bangalore, Delhi, Trivandrum, Gwalior, Thrissur, Bhopal, Mumbai, Bihar and Pune. More are planned for the rest of the year. For updates, visit www.iawrtindia.blogspot.com.

Photo by AFP via HaveeruOnline.

GRAFFITI: If walls in Delhi could talk, they'd be screaming in rage. Self-taught graffiti artist Rush expressed her anger by spray-painting "designated rape zone" on one wall next to Green Park Metro station. The guerilla trend has gone corporate, with media advertising agency Discoveri Media Group posting billboards declaring:  "Wake up India. She's dead. Stop sexual terrorism." According to Joint Managing Director Sunjjoy Daadhicch, "We felt it is now important to keep the public anger against sexual crimes...This is the first time that we have advertised for a social cause."

WRITINGSohaila Abdulali created a stir in the women's movement nearly three decades ago for her essay, “I Fought For My Life...And Won,” after surviving rape as a teenager in Bombay. Now, following Jyoti's death in Delhi, she has published another poignant piece in The New York Times, "I Was Wounded; My Honor Wasn’t," this time, older, wiser, more forgiving of herself, and more empowered to take on any violators of a woman's body, intimacy and control. "This is where our work lies, with those of us who are raising the next generation," she writes. "It lies in teaching our sons and daughters to become liberated, respectful adults who know that men who hurt women are making a choice, and will be punished."

DANCE: Playwright-activist Eve Ensler created a global dance-inspired movement called One Billion Rising. The campaign will stage performances and activist meetings in Delhi and Dhaka this month, and founder Ensler will make appearances in Paris, London, and Bukavu in February.  People around the world are invited to host their own events, including a “dance strike”, concert, flash mob or performance, on the campaign’s launch this February 14. The campaign is based on the statistic that one in three women on the planet will be beaten or raped during her lifetime. Based on the current world population, this adds up to more than one billion women and girls.

NETWORKS: Genderlog.com is an excellent crowdsourced hub of research, news and resources on gender violence in India. Also, Real Talkies has carefully curated Pinterest boards on videos about women, particularly on gender violence, as well as a list of documentaries, PSAs and nonfiction films that explore the status of women, sexuality and gender from an Indian perspective.

Photo via The Hindu.

ART:  In the aftermath of the Delhi rape tragedy, artist P.S. Jalaja designed a fresco calling attention to violence against women. His work was on display at the Kochi Muziris Biennale, an international exhibition of contemporary art. "We salute the courage of the woman who fought 'til her last breath," said the artist. A makeshift "tomb" was built in front of the fresco. "What lies buried in the tomb is not the girl who put up a brave fight,” writer K.R. Meera told The Hindu. "It is the conservative male ego that has for long claimed ownership of the female body."

SOCIAL MEDIA: Reena Combo, a media specialist and editor of an entertainment magazine, organized a candlelight vigil for the Delhi rape victim in Birmingham, England, by sending a tweet that went viral, even among Bollywood stars. "People were saying 'you work in media -- you can do something!'" Reena told CNN. Supporters are urged to continue using the hashtags #JusticeForDamini to raise awareness about the issue.

Art, Booze and Media: The Sustainability of Craft Beers

This article is part of our coverage of the 2012 Net Impact Conference in Baltimore. It originally appeared on Triple Pundit.

At the Net Impact conference in Baltimore, craft brewmakers discussed how their industry is taking leadership on sustainability and community development, in a panel discussion on Cases and Beer: The Sustainability-Focused, Community-Involved Brewery.

One of the ways they’ve been able to do this is through nurturing the local art and media scene.

Offbeat and benevolent

The Delaware brewing company Dogfish Head touts a Beer & Benevolence program to support local nonprofit organizations through partnerships, donations and other creative charity events. Its commitment to the community is demonstrated through its involvement with local artists.

The company has several in-house artists, including the founder and president, Sam Calagione. He is responsible for much of the quirky artwork on the company’s labels and advertisements. Many of Dogfish Head’s labels also feature original work by artists like Jon LangfordTara McPherson and Marq Spusta, reinforcing the company tagline: “off-centered beer for off-centered people.”

In an interview with PsPrint, Calgione said, “We didn’t want to hire outside marketing and advertising. We wanted to do it ourselves. I designed the logo and did an unintentional, intentionally imperfect shield.”

This DIY attitude extends to all aspects of the company’s branding. For example, Dogfish Head sponsors the Off-Centered Film Fest, to showcase up-and-coming filmmakers. “Don’t have high-end gear? Film it on your phone,” the festival website says. “Can’t write good dialogue? Shoot it live and call it gritty.”

It’s no surprise, either, that the entrance to the company’s Milton, Del. brewery features the zany Steampunk Tree House, a sculpture built in part from recycled and reclaimed materials by the Five Ton Crane art collective. According to lead artist Sean Orlando, “the Steampunk Tree House was made to explore the relationship between our rapidly changing natural world and the persistent human drive to connect with it and one another.”

Alternatively powered

The Colorado-based New Belgium Brewing Co. includes environmental stewardship as one of its core values and beliefs. To market its “alternatively empowered” sustainable business story, the company has developed several creative events and initiatives, combining film, social media and bicycling.

A twist on the traditional drive-in cinema, New Belgium’s Bike-In Cinema encourages film-goers to ditch their cars for bicycles, with proceeds from the evening’s entertainment going towards local nonprofit organizations.

The company also created Clips of Faith, an 18-city touring show that pairs beer tastings with screenings of short films produced by fans. All proceeds from the beer sales benefit a local nonprofit.

Finally, there’s Team Wonderbike, an online campaign asking people to take a pledge to bike more and drive less, all in the name of the environment.

And just in time for the holidays, to bring out everyone’s inner artist: The company has a customizable online card creator. For every card designed, the company donates $1 to one of several causes, including water stewardship, sensible transportation and bike advocacy, sustainable agriculture, and climate change prevention and adaptation.