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Composer finds the music in every life

By Louise Kinross

Northern Irish composer Deirdre Gribbin has produced over 50 works—from orchestral music to her opera Hey Persephone!—that have been performed around the world. Her UNESCO-winning work Empire States has played in 28 countries.

Writing music began as a way to express the conflict Deirdre witnessed growing up in Northern Ireland in the ’70s. “I saw things that kids don’t normally see,” she says. “Hijacked public busses blocking the road so you couldn’t go through, bomb blasts. I went to London to study and found myself writing about Northern Ireland. At a time when people couldn’t speak about Belfast politically, I could write about it in my music and I found it a powerful tool.”

Deirdre’s orchestral piece Unity of Being: A Peace Anthem for Northern Ireland was the first international work to be performed in New York City after the 9/11 al-Qaida attacks and was the subject of a New York Times piece. “It made me realize how music could cross barriers, redefine boundaries and have such strong purpose in people’s lives,” she says. “Music didn’t need words to communicate solace, sharing and comfort.”

After her son Ethan was born with Down syndrome in 2006, Deirdre came to see music as a potential voice for people with intellectual disabilities. “Why can’t someone with a learning disability who can’t speak write the most moving or the most joyful or the most angry piece of music?” she says. “If given the right and best technical support, people with intellectual disabilities can be the controllers of their own musical fate.”

Rather than skills-based music therapy outcomes, Deidre is interested in how music making builds self-worth. “If you give someone the skills to make decisions about how they want something to sound—about the shape of the piece or the structure or whether it expresses a certain emotion—it becomes their music, and then they have the confidence to be able to assert their own decisions in other areas of their life.”

Deirdre, who lives in London, is starting a composing group for eight-year-olds with Down syndrome—called Down Right Excellent—which includes son Ethan. “We may use colours or shapes to represent notes or emotions or types of music. I’m going to give them the language of music—so not just describing rhythm as fast and slow, but spikey and energetic, and how that links into emotions. They’ll learn about how to put music together. And if you can hear something that you’ve done, the sense of self you gain from that can really build your self-esteem: ‘I can’t do this and this and this. But I can do this.’”

Deirdre says raising Ethan has had a huge influence on her work. “The expectation when he was born was that he would compromise my work, or that I wouldn’t have the time to write music. But I’ve written some of the best music in the past few years.” Deirdre attributes this to her time being more focused—she goes away on retreats where she can write all day—and a greater emotional freedom in her work.

“I’ve always felt instinctively that it’s important to express emotional states through what I write, but now it’s very much at the centre of what I do,” she says. “I feel much stronger as a person because I’ve had to develop and nurture Ethan’s life and our family’s life. When you’re the parent of a child with a learning disability—and the mainstream is often acutely aware and subliminally critical of difference—you have to develop a side of yourself that is quite defiant and tough and never be afraid to challenge.”

After Ethan was born, Deirdre became interested in human DNA and how it works. “We were told that Ethan had an extra set of chromosome 21 and I came away thinking ‘What’s a chromosome and what does that mean?’” Last year Deirdre set a fragment of genetic code to music while working as artist-in-residence at the Medical Research Council’s Laboratory of Molecular Biology in Cambridge. Hearing Your Genes Evolve is the resulting string quartet.

“I learned that my son and a child without Down syndrome have 99.9 per cent the same genetic code,” she says. “And in that big 99.9 per cent, there are more similarities than differences.”

Deirdre wants to learn more about the content of chromosome 21. “Empathy, which is seen in people with Down syndrome, is genetic. It’s something in the genetic information that’s not just nurture. We should be looking not just at negative effects of Down syndrome, but at what it enhances.”

And instead of only measuring human qualities that have a market value—such as intelligence or athleticism—we should be interested in “things that make us better people, such as being selfless, caring and open.”


Photos by William Suarez

Anne Geddes finds a new focus: 'deceptive strength'

By Louise Kinross

Today is World Meningitis Day and Australian photographer Anne Geddes (right) is launching an e-book of photos of children from around the world who've lost limbs and digits to the bacterial infection. It's called Protecting Our Tomorrows and Benjamin, 15, above, with his parents, is one of her models.

Geddes, known for capturing the innocence of babies, says this project is about showing the beauty and resilience of survivors. (See our earlier BLOOM interview). Meningococcal disease is a deadly bacterial infection that inflames brain and spine tissue and infects the blood.

Geddes says she knew she'd achieved her mission when an eight-year-old boy looked at his photos and said: "For the first time, you made me proud of my amputations."

To tie the photos together, Geddes chose the theme of birds' nests.

"I decided to link all of these images in a really subtle way to what a bird's nest represents," she says. "Hope and protection and family and new beginnings. And, more importantly, deceptive strength: nests hold their elements and survive even though they look so fragile."

The project also aims to raise awareness of the importance of vaccinations and quick medical attention if your child has the symptoms of meningitis: fever, vomiting, headache, a stiff neck, sensitivity to light and drowsiness.

Capturing the children's differences in a way that emphasizes their wholeness was a challenge, Geddes says. "I didn't want to portray these children in a way that was a shock. I wanted the viewers' first reaction to be 'what a gorgeous little girl.' When you're with these kids for more than five minutes you just forget that they don't have legs, or arms, or both."

The children are from Australia, the United Kingdom, Ireland, Spain, Brazil, Germany and Canada. The project is funded by Novartis Vaccines and Diagnostics. The e-book, which includes the story of each child, is exquisite.



 

Disabled artists get a new platform for their work



By Megan Jones

Open the closet door in Liz Powers' Boston-area apartment, and you’ll come across a trove of artworks: a painting of a woman by the seaside, her soft purple dress billowing across the canvas; an image of a ship’s mast made of a single piece of paper, each detail painstakingly cut out by hand; an abstract painting of a pond populated by swans with backs that look like turtles’ shells.

All the works are created by artists who are homeless or low-income, or who have disabilities. Liz stores them in her apartment for safe-keeping, until they can be sold on ArtLifting, a website the Harvard graduate launched earlier this year with her brother, Spencer Powers.
The online gallery grew out of City Heart, an annual art show for homeless and low-income artists—some of whom have disabilities. Spencer and Liz started the show in 2011, and in the past three years, it's grown to include 70 artists from eight different homeless shelters.

At last year’s City Heart, the siblings were approached by impressed customers who wished they had more access to the artists’ work. “It was a recurring problem that tons of amazing work was created, but the artists didn’t have a good way to share the work with the community and sell it,” Liz says.
“Lots of people came up to us and said ‘Why just one day a year?’ We didn’t have a good answer, so we decided to start ArtLifting.”  

The works for sale include original paintings, prints and iPhone cases. Artists help to set the price, specifying how much they expect to receive for their pieces. An additional sum is then added to make up the final sale price. That money goes towards maintaining the site, and purchasing supplies to support a number of community art groups ArtLifting partners with. Pieces range in price from $34 for an iPhone case, to several hundred dollars for larger works.
Four months after launching, the site has partnered with a roster of about 15 artists who are in their mid-20s to mid-60s. A few of these artists have physical disabilities: for example, ArtLifting recently signed on four participants who have quadriplegia. As the program expands, Liz and Spencer plan to work with artists with developmental disabilities as well as those creating art in hospitals and disability centres. As a college student, she wrote a thesis looking at the social benefits of art therapy.

Allen Chamberland, 48, has used a wheelchair since he was a child as a result of respiratory issues. He was one of the first artists to sign on with the website. He has been making art in a variety of forms his whole life, and currently uses paper-cutting techniques to create intricate images of landmarks like the Charles River Bridge and the Christian Science Church (he appears in the photo above with ArtLifting co-founder Liz). The pieces are so detailed that larger works can take the artist a whole week to complete, even when he dedicates four or five hours a day to cutting.
Allen says ArtlLifting gives him a sense of accomplishment. “It validates your work,” he says. “It feels really good when someone’s really willing to buy something you’ve spent so much time doing.”  

It also allows opportunities to artists who might not normally get a chance to sell their pieces, he says. Prior to signing with ArtLifting, Allen relied on craft fairs to sell his work and supplement the income he received from disability benefits. 
But weather-related mobility issues made it difficult for him to attend fairs in the winter. Sometimes Allen would go months without selling a piece. Since joining ArtLifting, he says his winter sales have been more successful. All but a couple of his pieces were sold through the site from November to January this year.  

As the program grows, Spencer and Liz are looking to partner with hotels and businesses for larger, bulk sales. In the past few months, the siblings have been successful setting up two corporate contracts with business owners. They started ArtLifting using their own savings, but hope that soon, larger deals like these will allow the site to become self-sustaining.  
The duo are aiming to expand their reach beyond the Boston area, empowering as many artists as possible by helping them support themselves financially, and showing the public what they’re capable of creating.

“For people with disabilities, a lot of times outsiders focus on the negative,” Liz says. “They say things like ‘Oh, that’s too bad you’re in a wheelchair.’ But ArtLifting is a strength-based program. We focus on people’s talents.”

Walgreen proves the business case for hiring 'disabled' staff

 
 

In 2006 Randy Lewis changed the way Walgreen Co. does business.


As senior vice-president of supply chain and logistics for the U.S. drug store chain, Lewis oversaw 10,000 employees and up to a thousand new hires each year. As a father to Austin, who has autism, he knew the difference a job could make in the lives of young people with disabilities.

In No Greatness Without Goodness Lewis explains how he brought his corporate and personal worlds together, transforming Walgreen's distribution centres into inclusive workplaces where people with all kinds of physical and mental disabilities, many deemed unemployable, work to the same standards and earn the same pay as other staff.


The company's new mindset is proclaimed in a giant sign when you enter the building with the words "No 'them'" in a circle and a line drawn through it.

BLOOM: What is the message of your new book?

Randy Lewis: It’s the story of how I got involved with disability hiring, why we did it as a company and how we were able to go from essentially zero to 10 per cent of the workforce in five years.

The reason I wrote it was one, so that people could understand that people with disabilities could work effectively and have a positive impact on the work environment. It wasn’t just as good, it was better.

And two, that we all tend to underestimate our power to effect change and that everyone, I think, at their core really does want to change the world. As leaders, if we can tap into that in ourselves, that we want to do good things, we can unleash that in others.

BLOOM: How did you get the idea to hire people with disabilities?

Randy Lewis: I have a son with autism and so watching him grow up, I shared the same dream of other parents like me—to live one day longer than my child because you wonder what will happen to them after you’re gone. We’d go to these IEP conferences at school and I realized disability plays no favourites. It strikes traditional and non-traditional families, rich and poor. I got to thinking: 'What is going to happen to all of these other kids and parents?' If we’re hiring over here at Walgreen and there’s a need over there, why can’t we bring those two worlds together?


BLOOM: How did you sell the idea to the company?

Randy Lewis:
I said we’re not going to lower any of our performance standards, we’re a business, not a charity, and if it didn’t work out, we wouldn’t do it. What I discovered as an employer was we had lots of invisible walls around us—systems that we thought were giving us the best performers, but weren’t.

We were screening out a whole class of people who would never get through the Internet job application, or interview well, or look and talk like everyone else, or have all of their limbs. That was a huge turning point.

BLOOM: How did you get buy-in from existing staff?

Randy Lewis: We'd had some experience with enclaves, where we contract with another company and they bring people in with disabilities, typically to do janitorial or ancillary tasks, and they supervise them. All our employees liked it, management liked it. Here we are helping these people, but they weren't integrated.

One day a team member told the group about how important this work was to her and she showed a picture of these people with disabilities. They were all wearing the same shirts and she was in the picture with them, also wearing the same shirt. She made a point of telling me she was not 'one of them,' but their sponsor. I knew that was a problem. We had not embraced people with disabilities as equals.

After that we hired a young man with Asperger's to work on the line at one of our centres and he did a fantastic job. We had two women he worked with and I talked to them and asked 'How are things working with Chuck? Are people accepting him?' They said: 'If they don't, they have to deal with us,' and I thought now we're making progress.

Each of our buildings has different coloured plastic totes for shipping, and in this building they were grey. A couple of times every day a purple tote would get mixed up and come down the line and Chuck loved those purple totes. He would dance every time he saw one. At one point we said 'Is that appropriate behaviour for the workplace?' But then we got to thinking 'Why not?' We'd rather have him dancing than complaining.

So we started learning about inclusion and we were about to build a new generation of building. We had experience with the enclaves, we knew Chuck could work on the line, so I thought maybe this is time. Why don't we develop our automation with people with disabilities in mind.

BLOOM: How did you decide on what proportion of staff would have disabilities?

Randy Lewis: When it came time to plan a new-generation distribution centre 10 years ago to handle our growing business, I believed it was an opportunity to 'go big' with disability hiring in an intentional manner. We were designing new equipment and we thought let's make it effective for people with disabilities if we can do that with negligible cost.


We talked to a fellow who worked with people with autism. We knew we couldn't afford a lot of job coaches and we asked him how many typically abled people would we initially need to provide support to a person with autism, thinking the person with autism might be the most difficult to employ. He said maybe two people. So we decided one-third of the workforce is going to be a person with a disability.

No one had ever done this anywhere in the world in a production environment. If we don't get orders shipped accurately we're not in business. This was a clear and elevating goal. We would hire 200 people with disabilities out of 600 to staff this new-generation centre we were building in South Carolina.


Two years later we opened up a similar centre with the same goals near Hartford, Conn.

BLOOM: What did you learn?

Randy Lewis: We discovered that people with disabilities could do all of the jobs, not just the jobs we'd designed the equipment in mind for. The automation we put in helped everyone, not just the people with disabilities. We brought in managers from our other centres to show them that it wasn't about the automation. That they didn't have to have specialized equipment that we had in the new centre to be successful at this. They liked what they saw and were ready to try it out in their less automated buildings. And I asked them to set a clear and elevating goal and they said let's hire 1,000 people by the year 2010.

BLOOM: Why were the staff with disabilities so effective?

Randy Lewis: We underestimated them, it's as simple as that. When we measure performance, the people with disabilities perform as well statistically as the others. The standard is not that they have to be Superman or Jackie Robinson. But the employees with disabilities also have fewer accidents, better retention, less absenteeism and they make people better managers and create greater teamwork.

BLOOM: So it sounds like overall there were definite advantages.

Randy Lewis: Yes.

BLOOM: Did the culture in these environments change for the better.

Randy Lewis: I asked people in our South Carolina and Connecticut centres who'd worked in other buildings without disability hiring, 'How did you rank engagement when you were there?' And they'd say probably a seven or eight out of 10. Then I asked them to compare that level of engagement with what they saw in the building they were in now. They said the eight would drop to a two.

'We didn't know what engagement was until we got here,' they said. 'We didn't know what teamwork was like.'

If you ask managers in the buildings with a large percentage of people with disabilities what is their number one job, they'll say 'My job is to make everybody who works for me successful.' When you have that kind of attitude the workforce notices and they respond to it.

BLOOM: How has the experience created better managers?

Randy Lewis: We've learned to 'manage in the grey' and by that I mean we want to manage with values or principles, not rules. People like rules, bosses like rules because they're easier to administer. For some of our supervisors that was uncomfortable at first, but I said if it's just about administering rules I can get my own children to come in and run this place. We asked people to look at the purpose of rules and apply what were the principles of the rule, rather than the rule itself. This caused us to look at a lot of our policies.

We changed the way we hire and recruit because a lot of people can't get through the Internet application system or need help applying. If there's a discipline problem, we let the employee bring in a parent or advocate because we want to make sure they understand and we understand.

Sometimes we make exceptions to a rule. For example, I remember a situation where a young man became frustrated because he had to work overtime and he was going to miss a doctor's appointment. He punched a computer screen and broke it.

The rule is that if you break something intentionally, you're fired forever and forever banned from the company. We got to thinking: 'Is that a good rule? Is there ever an exception?' Even Aristotle way back when noted that human behaviour is not mathematics, it's not finite reasoning, there are exceptions to all things.

So we went back and had to look at that policy as it applied to all of our staff. We needed a framework. And it was: 'Is there an extenuating circumstance? Is there a reason to expect the person won't do it again? And what's the likelihood that they'll be able to find employment elsewhere?' We don't decide in favour of the employee in every case, but we did in that one.

Our managers say this idea of managing in the grey is the most powerful thing that's made them better managers.

BLOOM: It sounds like they feel empowered in a new way.

Randy Lewis: The change is huge. They talk about managing with love, a word we've never used in the workplace.


A few years back we had the president of a Best Buy division come through for a tour and afterwards he sat down with our managers to ask questions. 'I've heard all the good things about this place,' he said. 'What's a bad day like?'

And essentially the supervisors said: 'A bad day is when I come in with my own problems and I'm not focused on my staff and the work. You know that saying 'You come home and you want to kick the dog?' If I do that at work my staff will either shut down or start acting out or they'll confront me and tell me why I'm being a jerk. Or they'll come up and give me a hug. One thing I've learned is that when I'm here, it's about them, not me.'

BLOOM: How costly is it to train people with disabilities?

Randy Lewis: It was negligible. What we did was go out in the community and get partners. We demanded that disability agencies in the community form a coalition and work together with us. We built a training room in a community-rented space and for a year the community screened and trained people and taught them how to use our equipment. Now we have training rooms within our buildings.

Typically a new employee has 60 days' probation and by 60 days they have to be up to full productivity. We anticipated that people with disabilities might need longer because out training might not be right for everyone. So we created an alternative pipeline into the company. If you have a disability and want to come in that route you are paid as a temporary employee, with no benefits, and you can stay in that group as long as you're progressing towards full productivity. It might take 60 days or less, some may take 90. One person took a year. Once they're at full productivity they're hired as permanent staff.

BLOOM: In a news story I saw you talked about an accommodation where you name, as well as number, stations. Can you explain that?

Randy Lewis: For someone who has difficulty with numbers and directions, we've named stations as a group of animals in a zoo. So we might say 'You'll be working at rhinoceros in zoo.' We also have a race-cart alley and a hamburger alley. So perhaps you'll be working at the hot dog station in hamburger alley. These are simple things that help some people. Most of our accommodations cost less than $20 and most are paper and pencil.

BLOOM: What's been the greatest challenge in implementing this model?

Randy Lewis: The biggest impediment to overcome is fear.

BLOOM: How did you manage that?

Randy Lewis: To outsiders in the organization I said: 'We're here to make money, we're here to make it work. If people with disabilities can't to the job, they won't be working here.'

To those who reported to me I said 'Our standard is to give it our very best, so if it doesn't work, we can tell the world this is not possible. Give it your very best, and if it doesn't work, we know no one else could have done it better than us.' That was very freeing for everyone.

We also said 'We don't have all the answers. There are going to be problems we can't anticipate, so let's not worry about those. If you anticipate a problem, let's figure out a way around it. And you can't bring a What if? unless you've thought of a way around it. Most of the problems we anticipated never happened.'

BLOOM: What was a problem you didn't anticipate?

Randy Lewis: We thought all of our systems were great for getting us the best employees. We thought we'd build this and as soon as we put an ad in the paper all of the people with disabilities would come flocking to us. We didn't think about the fact that this is a group that doesn't read the paper every morning looking for places to work. It's not a group that trusts employers. It's a group that may have difficulty in even getting to the job site for the interview. We didn't realize we had so many invisible walls.

It took some work for us to say gee whiz, we're going to have to do something different. We worked with community agencies. We've had to teach them to understand our jobs and send us people that they believe will be successful.

BLOOM: What are common myths about hiring people with disabilities?

Randy Lewis: That they can't do the job, it's going to cost me more to make them effective and when they fail I will get punished.

BLOOM: Has Walgreen hired people who were considered unemployable?

Randy Lewis: Lots of them. For most of them it's their first job.

BLOOM: What does the average person get paid?

Randy Lewis: They make close to US$30,000 on the production line.

BLOOM: I heard that in a couple of your distribution centres as many as half of all employees have disabilities.

Randy Lewis: In our original centre in South Carolina, 40 per cent have disabilities. In our newer centre in Connecticut, 50 per cent have disabilities. In 2011 we achieved our goal of having 10 per cent of the workforce made up by people with disabilities. Before I retired 14 months ago, the centre managers from across the country met and set a new goal to reach 20 per cent.

BLOOM: What kind of impact do these jobs have on people with disabilities?

Randy Lewis: For many a world of possibility, opportunity and responsibility is opened to them for the first time. They have relationships they've never had before. They have money they never had before. And there are some unanticipated consequences, too. For instance, some become like teenagers: they stay up too late at night playing video games because they can afford them now. It's a whole village of people working together that's expanded everyone's way of thinking.

BLOOM: What advice would you give a parent who's concerned that their child won't be able to get a job due to disabilities?

Randy Lewis: The words we hear as parents of a child with a disability are 'always' and 'never.' We have found that that's not necessarily true. I was in Canada yesterday with a new organization of employers called SensAbility. They're going to look for employers in Canada who will help spread this model. Ontario's Lieutenant Governor David Onley has taken employers to visit our site and is very active in helping Canada advance on this front. So I'm very hopeful about Canada.

BLOOM: What about your son. What are his dreams?

Randy Lewis: I wish I knew. I wish he could tell me. He's 25 and he works about 12 hours a week in a Walgreens store. There's a Michigan company building a distribution centre about an hour from here in Chicago and the owner has talked about how one day he wants Austin to be their employee. So we're going to go up and see it.

BLOOM: What impact do you hope your book will have?

Randy Lewis: I hope people read it and believe it's possible and try it. There are enough models out there to do it. We make only three cents on the dollar, so our margins are razor thin. If Walgreen could do it—and we didn't have any models to work from—anyone can do it.
 
 

Anne Geddes' lens reflects resilience

Australian photographer Anne Geddes is known for capturing the innocence of babies in bumble-bee and acorn costumes that replicate life in nature.

But her latest project it not about innocence. It’s about resilience.

Geddes is photographing a dozen children and youth from around the world who’ve lost limbs and digits to Meningococcal disease—a deadly bacterial infection that inflames brain and spine tissue and infects the blood.
Geddes says she knew she’d achieved her mission when an eight-year-old boy looked at his photos and said: “For the first time, you made me proud of my amputations.”

Capturing the children’s differences in a way that emphasizes their wholeness was a challenge, Geddes says. “I didn’t want to portray these children in a way that was a shock. I wanted the viewers’ first reaction to be ‘what a gorgeous little girl.’ When you’re with these kids for more than five minutes you just forget that they don’t have legs, or arms, or both.”
To tie the photos together, Geddes chose the theme of birds’ nests.

“I decided to link all of these images in a really subtle way to what a bird’s nest represents,” Geddes says. “Hope and protection and family and new beginnings. And, more importantly, deceptive strength: nests hold their elements and survive even though they look so fragile.”
She describes a particularly magical moment when photographing a boy who initially sat down in the room with his hands behind his back.

“After about five minutes he brought his hands out and climbed on the box and said ‘I’m going to do a yoga pose.’ I ran back to the camera and he did this lotus position and put everything that was ‘wrong’ up front—his toes and his hands—and stared into the camera. It gave me the tingles and my hand was shaking while I was shooting, and then it was over.”
The project aims to raise awareness of the importance of vaccinations and quick medical attention if your child has the symptoms of meningitis: fever, vomiting, headache, a stiff neck, sensitivity to light and drowsiness.

The images also promote the beauty of survivors. “I want this series to transcend time,” Geddes says. “It will be this series of beautiful children who have disabilities, but it doesn’t matter.”
An unexpected benefit is the sense of community it generates for participants. “We were shooting one girl from Spain in the morning and a little fellow from Germany in the afternoon, and they crossed paths at the hotel and apparently she turned to her parents and said: ‘He’s just like me.’ This made me think the series will also get the message out that these children are not alone.”

Viewers will discover subtle elements of birds’ nests in the images—an illustration, a piece of twine tied around the waist or feathers in the hair. The children are from Australia, the United Kingdom, Ireland, Spain, Germany and Canada.
The photos will be published in an e-book on World Meningitis Day April 24. The project, Protecting Our Tomorrows, is funded by Novartis Vaccines and Diagnostics. Bernadette, above, and with her mom below, is one of the participants.