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Listen, Learn
By Anthony Thanasayan, 3 July 2003
Used with permission from Star Publications (M) Berhad
STRUGGLING with the physical impact of a chronic or life-threatening illness is hard, but having to cope with the other effects of illness, from diminished capacities and loss of income to a future filled with uncertainties (something that people with disabilities often face), is an equally tough challenge.
A report broadcast on the Voice Of America (VOA) from Washington DC last month revealed that in recent years, several community organisations in the United States have been formed to help people cope with challenges of this
nature.
Listening to the report, I feel that there is much that we in Malaysia can learn from the example set by the Americans - especially in the way in which we care for the disabled and other marginalized groups in our society.
The VOA account began with one grassroots group called Helping Our Women (HOW) in Provincetown, Massachusetts, that devotes itself entirely to helping women.
Executive director Irene Rabinowitz has a client list of 163 local women within HOW's programme, which runs on private contributions.
HOW conducts two weekly support groups - one specifically for women with cancer while the other is for women with any kind of chronic illness.
HOW not only gives out financial assistance to low-income women who have to deal with their illness but also includes transportation services for clients.
The women on HOW's client list suffer from a wide variety of ailments including muscular dystrophy, AIDS, cancer and severe depression.
HOW's goal for all its clients is to help them regain some control over their lives. "When people become ill, they lose control of so many things, such as the ability to make a living, and sometimes even to take care of their basic physical needs," said Rabinowitz.
"HOW responds by not putting conditions on them or their disabilities as we are not here to fix people up," she pointed out, "but to help our clients cope with something that has impacted their lives - quite often very greatly."
HOW also helps women build up self-confidence, which can suffer a severe blow from the weakness or disability that illness can bring.
Many, for instance, are daunted by the complex healthcare bureaucracy they must face, or are unsure about how to fill out the complex forms necessary to qualify for state housing assistance.
According to HOW administrator Terri Nezbeth, showing women how to fight to protect their interests is one of her job's chief pleasures.
Speaking on the VOA, Nezbeth said she is thrilled when she is able to help women who thought that they were unable to accomplish things for themselves like showing up at their doctor's office, filling out an application for housing (and later getting the house), etc.
HOW's cancer support group has been a boon to Fayette Watkis, who was diagnosed with breast cancer five years ago. Watkis initially felt confused by the seemingly contradictory advice her doctor gave her.
"I was one of those raised to believe that the doctor was God and you don't question anything (he) said.
"But I ended up actually firing my doctor because of the support I was getting through HOW, and have since moved on to a much better doctor who listened to me and didn't tell me that I was just an over-worrier," she said.
Sometimes, clients in a support group choose to test their physical abilities together.
For example, HOW recently sponsored a day-long retreat to a lighthouse. Last spring, several women in the cancer support group took a lesson in open-sea kayaking.
These sorts of activities remind women that their diagnoses do not define them, and that fun can be beneficial.
But for Susan Mitchell, a breast cancer survivor, the most wonderful thing about the support group is the sense of genuine community and belonging.
Mitchell said the fact that everyone realises that they're there for each other and that they make good listeners is the key to the group's success.
Rabinowitz often receives queries from people who want to start a similar community group of their own.
To begin, she said, simply find a like-minded set of friends and meet regularly, get to know each other, and discover shared goals and available resources.
"Even if you have to meet in a village square sitting on benches, or a local religious establishment, as long as you can meet and talk about your issues, (that is important).
"From then on, it grows and grows - just from a bunch of women sitting around and talking," she said.
Rabinowitz acknowledged that finding a "safe space" has been easier in ultra-liberal Provincetown than it might be in many parts of the world.
There may be cultural barriers and shame surrounding illness, she said, but one has to let go of that and say that it's no one's fault. "When you're dealing with someone with an illness," added Rabinowitz, "one must realise that that person needs assistance more than anything else - and it must be done unconditionally.
"Just open your heart, listen and learn!"
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