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Fighting a stigma: stepping beyond charity and closer to equality

2011/03/09 19:03:47

Taipei resident Yao Hui-li enjoys dinners out with her boyfriend,holds down a regular job, and regularly uses public transportation toget around, just like many other woman in Taiwan.

The way she is treated on the bus and in other public venues,however, makes it impossible to forget that she is seen by others asbeing different.

"No matter how packed the bus is, the seat next to me is alwaysempty. The truth is, people would rather stand than sit by me, " Yaosaid. "I know why -- it's because I have serious burn marks on myface."

The 54-year-old burn survivor has often been treated like apariah since an incident that left her face disfigured 24 years ago.She is reluctant to delve into what happened, describing it simply asthe result of domestic violence and a bad marriage.

But after having dealt with her plight for more than two decades,she has one simple appeal that is at the heart of what advocacygroups like the Sunshine Welfare Foundation are hoping to achieve intrying to change the mind-set of Taiwanese society.

"I would like it very much if everyone talked to me and treatedme like a normal person," Yao said.

According to Ministry of the Interior figures, Taiwan had 4,458people in 2010 with more than 30 percent of their faces burned ordisfigured, including from illness such as oral cancer.

They will continue to suffer from discrimination unless Taiwan'speople better understand their real needs, said Jean Shu, the chiefexecutive officer of the Sunshine Welfare Foundation, which providesrehabilitation support for burn victims.

Although many people in Taiwan are caring, they are unaware ofthe best ways to help those whose appearances are different fromothers, she suggested.

Public attention at present is focused on showing sympathy --such as yielding seats on a bus or making donations -- Shu said, butnot enough work is being done on education regarding attitudes orsocial interaction toward people with facial burns or disfiguration.

More than financial support, what this group really needs,according to Shu, is fair treatment, without prejudice anddiscrimination, in every aspect of social life, especially in theworkplace.

The energetic and active Yao is a case in point. Her "husband"(the term Yao uses even though the two are not formally married) is aprofessional painter, and when she appears at job sites with him tohelp him paint, she is often confronted with skepticism.

"Customers think I will drag him down and delay the work. Someeven suggested out of good will that I should stay at home for my owngood.

"They don't understand that I am a normal person with a differentface, " Yao said. "They always forget that we still have pairs ofarms and legs."

Yu Chao-hui, an employment adviser at the foundation's center ingreater Taichung, has faced similar reactions when trying to findjobs for burn victims, who are seen by many employers as incompetentor likely to scare away customers.

"There is not much career choice when you are a burn survivor.Even though the government has stipulated that a certain proportionof physically or mentally challenged workers be employed, privatecompanies still prefer the fine over a hire," Yu said.

Of the 53 burn victims that looked for jobs through thefoundation in central Taiwan in 2010, only 24 are currently employed,the adviser said.

Females with disfigured faces often land jobs such as officeclerks while males tend to up as cleaners or security guards, shesaid.

"As hard as we try to communicate with employers, jobs thatrequire face-to-face social interaction are still impossible dreamsfor burn survivors," Yu said.

That's where changing attitudes comes in.

"We want to spread the word that burn survivors are capable ofmany things and that they deserve the right to be treated like everyable person -- to make friends, to have a job that they like, and tocarry on their lives," Yu said.

To drive the point home, the foundation has teamed up withBritish charity Changing Faces since last December to help victims offacial disfiguration in Taiwan.

Shu said the new campaign differs from past initiatives becauseit forces Taiwan's people to confront and discuss the issue, ratherthan shy away from it.

Faces of burn survivors, for example, will replace those ofcelebrity spokespersons on infomercials, posters, and leafletsdistributed and broadcast across the nation.

As part of the campaign, the foundation also invited 60individuals to wear pressure garments -- used by burn victims tocover burns and keep pressure on the skin -- to experience how otherslive.

"People looked at me differently. Those who have not gone throughthis would not understand the heavy toll on the body and mind," wroteTsao Chun-yao, who wore a pressure garment on his hand, on thefoundation's Facebook site.

"I give a thumbs up to the burn survivors."

Another female participant who works in the service industry tookthe more drastic step of wearing a pressure garment over her face.

"I felt sad when some of my regular customers said I lookedscary. I can't bear to think what strangers make of burn victims theysee on the street," she said.

This sort of response and feedback is what the foundationexpected, Shu said, because only by putting yourself in others' shoescan you understand how to treat the disadvantaged with dignity andequality.

"The government has a policy to create a barrier-free environmentfor the physically challenged. Now we are after building abarrier-free mentality for Taiwan," she said.By Nancy Liu, CNA staff writer