ProtestMS aims to give MS patients space to tackle the disease on their own terms. Emily Meredith visits an art workshop to find out more

Small bowls full of beads, cut-up pieces of soda cans, safety pins and neon mannequin heads decorated what looked like the set-up for an arts and crafts session at a summer camp on a table in the Shelter in Al Quoz earlier this month. But instead of school-aged children engaged in art projects, the people sitting at the table were adults gathered for a jewellery making workshop run by a local organisation focused on raising awareness of multiple sclerosis and its effects.

Founded by designer and stylist Mandi Kingsbury, a New Zealander who has worked in Dubai for years, ProtestMS runs workshops where volunteers and people living with multiple sclerosis learn how to make pins and bracelets designed by Kingsbury and later sold at local boutique 50 Degrees.

Wearing a ring made from an old bottle cap and a bright orange bracelet from safety pins, Kingsbury talks animatedly, saying the group’s use of old and recycled materials is an extension of her interest in industrial design. As a fashion design student, her final project was exclusively comprised of metal.

“I’m not really a fabric girl,” she says. After working as a stylist for several years, she went back to New Zealand to work on a degree in jewellery design. “I was always thinking maybe I’d missed something.” But in doing the degree, Kingsbury found that she was not very interested in fine jewellery. Rather, she again turned to the heavy metals and found objects that intrigued her during her fashion diploma.

While Kingsbury can chat extensively about the design of ProtestMS jewellery, the group’s other purpose is to be a place where people with MS and volunteers can come and talk freely as they work.

Multiple sclerosis is widely thought to be an autoimmune disorder in which the body’s immune system, meant to ward off infections, mistakenly attacks the central nervous system. This can lead to both physical and mental impairments, although the life expectancy of MS patients is roughly the same as the general population, and people diagnosed with MS frequently show no symptoms for years.

“[The workshops] build a real sense of community and I think it builds a sense of support,” says Natalie Gillam, who started volunteering with ProtestMS a few months ago. “There’s nothing like that in Dubai, somewhere people can get together and contribute towards creating something.”

Kingsbury says that the workshops facilitate talking about symptoms, something Gillam said she found locally-based MS patients seemed reluctant to do when she tried to begin her own support group a year and a half ago.

“I don’t think people like to be branded as being ill or sick. I think people are a bit scared to talk about it and to be judged,” Gillam says. “When I rang around, I thought everyone  would go, ‘Oh that’s a great idea,’ but everyone went, ‘that’s the last thing I want to do, to sit round and talk about my disease.’”

At this stage, Kingsbury says approximately 40 per cent of the volunteers who come to the workshop suffer from MS. The rest are friends and family, something that Gillam says initially surprised her.

“I thought there would be a lot more people with it [MS]. I don’t know why I thought that since I tried to start my own support group and nobody came,” she says, laughing.  Both Kingsbury and Gillam returned to the idea of a creative outlet as a way to attract more people to the group. When asked if she had any  prior experience working with jewellery, Gillam, a business coach, responds, “Well, I like wearing jewellery.”

While the group is largely focused on awareness and support, Kingsbury chose to use the word ‘protest’ to convey the way she thinks about handling her disease.

Kingsbury was diagnosed several years ago, but says she has had it for approximately 10 to 15 years. “I’ve had it for so long, I know that I can deal with it,” she says.

“Protest is a strong word and that’s really my understanding of the disease. Like, ‘let’s just get on with it’. It is a protest because you look so well on the outside,” she says.

Kingsbury has also described it as a construction or a warning sign, adding “I’ve never been afraid of shocking people.” 

She says that when she formed the group, she asked a lot of people involved with MS societies about using the word ‘protest,’ and many said it felt too combative.

Even Gillam, who was diagnosed two years ago, thinks about the disease differently.

“Protest, it probably does speak to a lot of other people,” she says. “Protest  wouldn’t be my choice of words. But, I know why Mandi’s used the word and I understand why she’s calling the group that. For me, I don’t protest against it because I don’t live like I’ve got it. I’ve really worked on my mental attitude.”

While the semantics of living with a chronic disease like MS might vary from person to person, Gillam and Kingsbury’s approaches sound very similar. “You have to start being quite business-like about it. I take my medicine as an insurance policy,” Kingsbury says. That business-like policy can be expensive, though, with medicine running to Dh5,000 each month.

Kingsbury said she hopes to expand the group. At the moment, the proceeds from sales go to meeting the costs of running the group.

By branching out and having people manufacture jewellery in their spare time, she hopes the materials will generate enough revenue to donate money towards research, or to help group members meet the cost of their medicine.

ProtestMS will run its biggest workshop yet at Dubai International Jewellery Week, which runs from, November 4 to 7, with four workshops and exhibitions during the entire event. Volunteers are making pieces at home in the hope of selling them at the event. The organisation is also looking at expanding into other creative outlets.

“My former car is about to become a ProtestMS workshop,” Kingsbury says. She proposed turning her old car, a silver Audi Cabriolet she called ‘Kitten’ into a piece of large artwork as part of next year’s Art Dubai.

“The car had so many problems it made me feel good. I knew I could make myself keep going.” She had her doubts about Kitten, though.

emily@khaleejtimes.com