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I recently came across this article, via the NY Times Motherlode blog, which describes the frustrations experienced by the mother of an autistic child. Her frustrations lie not with the travails of raising an autistic son, but with the world around him and how his peers respond to him: not through empathy or care, but as if he were their charity project. Worse still, they are self-congratulatory about the many ways that they have “helped” her son, through participation in an alternative sports club. A few key passages:

One Saturday morning last year, Marc and I sat in the synagogue listening to a boy we know from our town deliver his bar mitzvah speech. “For my mitzvah project I’m so proud of all the work I did for the Alternative League,” he said. “I’m really good at sports, so I was able to share all my skills with those kids.”

There it is again. Those kids.

“I hope I helped their lives in some way,” he added.

Marc leaned in. “Did he come to any of our games?” he whispered.

“I saw him there once. Maybe twice?” I whispered back.

Here’s what particularly galled me: this kid, all self-congratulatory smiles, actually lives in our neighborhood. He’s close in age to our son Mickey. But in all these years, this boy has never – – not once – rung the doorbell to ask if my son wants to come out and play.

*****

My friend Susan, the parent of a child with a disability, tells me that last year some boy on her block who had an assignment for his church’s confirmation class asked to “borrow” her son Jacob. They played basketball in the driveway for ten minutes, till the boy’s mother came running to document the event with her digital camera. Susan showed less forbearance than I. “I’m sorry,” she said, stepping firmly between Jacob and the camera. “I feel very uncomfortable with you photographing him. My son isn’t a project. He’s a person.”

*****

I’m tired of other parents who expect me to go all soft-eyed and grateful because their kids spend one hour a week on a soccer field kicking a ball around with my son. My child isn’t a mascot. He isn’t a charity case. He isn’t a community project. He’s a kind-hearted, teen-age boy who enjoys having friends. And he happens to have autism.

This article hit me really close to home as I read it. As the older sibling of two kids with disabilities, I respond pretty viscerally to stories like this. I remember watching my brother and sister (they’re twins) enter high school freshman year, when I was a senior. Watching them, with heartbreak, from afar as their peers teased them, ignored them, or talked down to them. I would’ve been enraged if I knew that people used them for their own self-promotion. That by “befriending” my siblings, they would gain access to scholarships, get into ivy league universities, etc. I can completely sympathize with the mom who wants people to view her son as a full person – not a project.

But, just as much as Kupferberg’s article reminded me of my own brother and sister, it reminded me of much of the workings and attitudes within the development world. When the poor and the marginalized become projects – absent from real relationships – we fail to do our jobs. When we make a group of people into “those people” who should consider themselves lucky to receive the charity we’re giving them, we’re reenacting the dynamic that Kupferberg describes in her article on a large scale. If we think that working with “those kids” or “those poor people” is a reason for us to congratulate ourselves on what wonderful people we are, we are sorely amiss. There is another subtle message in this article, which is that Kupferberg’s son, and others like him, have a lot to offer their peers. This mirrors what the asset based community development school of thought says about poor communities: there is much knowledge and value in these communities, and this value should be central to any development that takes place.

Put more simply: the “other”-ing of both individuals and communities for our own gain is not only harmful to the individual/community, it also prevents us from learning something new and useful.

I feel a bit of irony writing about this, as I have benefitted greatly on account of the work I’ve done with various communities: from my admittance to Northwestern to my Mitchell scholarship.  So the article hits me very personally as well.  But I think Kupferberg’s main point is about the attitude with which we engage these people and communities.  Is it for our own gain, where we possess all the knowledge and are mostly working to advance our own careers?  Or is it for collective gain, where everybody learns and everybody teaches, for everybody’s benefit?  I hope that I can continually strive to work towards the latter.

Reading this reminded me of the pain experienced by individuals who are made into a project.  I want to keep re-reading it, to remind myself of that danger in my own work, and the very real consequences it can have.

Betty surrounded by baskets and artisans

Betty surrounded by baskets and artisans

Whenever I see Betty, usually seated outside Uganda Crafts with a line of visitors waiting to be seen by her, she greets me like this, “Banange, Nabukalu! Nsanuse okukulaba!” Which basically translates into “My goodness, Lauren! I’m so happy to see you!” I am the happy recipient of this warm greeting whether it has been a month since I’ve seen her, or just a few days.

Betty Kinene is a indeed a very warm and special person to me and to hundreds of other people.

Betty was born in the 1950s and contracted polio at the age of 3. As one of 35 children from her father (yes, THIRTY-FIVE), Betty struggled to pay for her schooling, but managed to get by, and was one of the top students in the country.

After schooling, she made a living as a shopkeeper in Kampala. She lost her husband during the Amin regime, but managed to continue working and caring for her children on her own.

In 1983, the president of Uganda, Milton Obote, allowed Indians who had been expelled from the country under Amin to return to the shops they had lost. Betty turned up to her shop one day, and found it locked and all of her merchandise seized. It had been an Indian shop before and was being reclaimed now. Shocked by her loss of employment and merchandise, Betty sat down on the steps to cry. A woman named Marilyn Dodge, who had been a faithful customer of the shop, happened by, and saw Betty crying. Marilyn, who was an American working with UNICEF, had an idea for Betty: start a new shop which employs disabled people through crafts. Betty and Marilyn began planning, and Uganda Crafts was born.

Uganda Crafts began as a small non-profit shop, which sold a variety of handicrafts to tourists in Kampala. Dozens of men and women, some disabled, some widowed, and some simply poor, began to sell their work to Uganda Crafts for money. The non-profit grew and grew, and in the 1990s, Uganda Crafts began selling baskets to Ten Thousand Villages, a fair trade shop in the United States and Canada. It was then that Betty learned about the concept of fair trade and started incorporating it directly into her work with Uganda Crafts.

Today, Betty continues leading Uganda Crafts as the managing director. Uganda Crafts became a for-profit business in 2000, in an attempt to “stand on our own” as Betty puts it, and become self-reliant, not depending on donations or charity. It turns out that Betty was ahead of the curve as some of the current trends in the development world include social entrepreneurism and a backlash against dependence on aid. Uganda Crafts now exports crafts to numerous fair trade retailers in the US, Japan, Sweden, Austria, Canada, and beyond.

In addition to running Uganda Crafts, Betty is a counselor in her home district of Mpigi. She helps settle disputes between community members and even within families. She’s involved with many different organizations which work with people with disabilities. She also started Papula Paper in 2006, a community based organization which I’ve written about recently. Always an entrepreneur, she recently opened a hostel near her home for students attending a new art university.

In person, Betty is warm and funny. She loves teaching me about Buganda culture, and was quick to adopt me into the family by naming me Nabukalu (meaning either clever woman or difficult woman, depending on who you talk to). This name signifies that I am a member of a particular clan, the clan of Betty’s husband, making me a sister to her children.

Betty is one of the people I will miss the most when I am gone. She’s an inspiration to me and to so many women and people with disabilities working in Kampala today. I’m proud to call her a friend.

creating recycled paper picture frames

creating recycled paper picture frames

On today’s agenda was a visit to Papula Paper, a fair trade paper making outfit that has a very special place in my heart.

Papula Paper was started in 2006 by the founder of Uganda Crafts, Betty. Betty wanted to start a fair trade project in her home district of Mpigi, and was given some startup money for a building. She chose to build a paper workshop and retail space just a minute’s walk south of the equator, a popular stopping point for tourists on their way to some of Uganda’s national parks. In 2006, my friend Muireann and I took a trip to the building site and helped design the building. We also brainstormed names for the new project. My suggestion won in the end: Papula Paper (from the Luganda word for Paper, olupapula.

Coming back to Uganda and seeing the success of Papula has been really exciting for me. So it’s no surprise that today’s trip and meeting with them was a lot of fun.

Lillian, one of Betty’s daughters and one of the managers at the Equator location, took the time to show us around the workshop and explained the paper making process. The papers that Papula creates are all made using recycled or natural materials. Farmers bring the tops of pineapples, elephant grass, and old banana fibers and sell them to the workshop. Individuals and organizations donate old printed pieces of paper. These materials are the basis for the paper, which can later be turned into a bunch of different products: stationary, greeting cards, boxes, notebooks, etc.

cute stationary in a pretty little box.

cute stationary in a pretty little box.

Papula’s products are beautiful and it’s cool to see how discarded materials can be put into use again. Papula is also notable for its commitment to the community of disabled individuals in Mpigi. Several of the full-time workshop staff are disabled, and many others from the community bring their work to the retail shop to be sold as well.

Having watched Papula Paper grow from just an idea to a successful project promoting environmental sustainability and employing dozens of local community members, I can’t help but be optimistic for its future.

lillian demonstrates for us

lillian demonstrates for us

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