Frontline Initiative Changing Roles

 During the summer of 2000, I was invited by the AAMR to be a delegate to the People’s Republic of China (PRC) under the auspices of the People to People Ambassadors Program, the Brain Injury Association, and the Ministry of Health of the PRC. People to People was started by President Eisenhower in 1958. He saw the need to work to prevent war like the one he had experienced all too personally. The idea was to have small group interactions to share professional information and important cultural values in order to build bridges of understanding instead of walls of suspicion.

The cost for two weeks in China was around $6000 (not affordable on my DSP salary). Fortunately, due to the support from several sponsors, I was able to go. My sponsors included Area Agencies Regions VI and X in New Hampshire, the Nashua Center for Multiply Handicapped, the New Hampshire Brain Injury Association, the Division of Developmental Services in New Hampshire, the New Hampshire Developmental Disabilities Council, and the Nashua Exchange Club. I have been doing direct support in New Hampshire since 1991, and for the past 6 years, I have also been involved in NH’s direct support movement. I have done volunteer work representing DSPs for most of the above agencies. Trust me, it pays to be involved!

The group going to PRC was larger than originally planned. Among the 36 of us, there were self-advocates, family members, administrators, therapists, lawyers, a doctor and one other DSP. She and I did what we could to carry the spirit of direct support to China.

We hit three cities in ten days: Beijing, Xian, and Guilin. Beijing is the capital of PRC, with 14 million people. Xian is an ancient city at the end of the old Silk Road and has a significant Muslim population. Guilin is a subtropical riverine and a beauty that only a small city (600,000) can show.

We saw few people with disabilities in the community. A few individuals with physical disabilities were seen begging at tourist sites. We did not see a single person with an obvious developmental disability out and about. There were very few accessible places beyond some hotels and airports, and there were various barriers, beyond physical ones, that we faced. Time was short, only a couple of hours per visit, and the size of the group made movement slow. Other barriers, such as “loss of face”, were due to cultural differences. Disability is viewed as an embarrassing thing in PRC, not something to share with others. Also, there is the Communist system, which by nature is secretive. Furthermore the language barrier stymied interactions.

There were some obvious differences in supports to people with disabilities in China that I observed. China has long used practices such as acupuncture and aromatherapy and therefore, seemed more advanced that way. They also made family involvement key to any therapy or support services. Communities support those individuals without a family. This was all part of the community context. Everything in PRC is done for the group, community, and society.

It seemed that some people with disabilities lived at home, while others lived in institutions. But we did not catch more than a glimpse of the institutions, so I can’t really comment in depth on the care provided within them.

Although jobs are assigned in PRC, human service jobs are not desirable. Pay, prestige, and the like are low, as is the marriage rate for people working in human services. It is unpopular work in society’s eyes. They dress in white gowns, the color of mourning in China — not exactly inspiring! Yet, those in this field seemed to genuinely care even though concepts such as self-determination seemed far away, and the environment was cold, clinical, and sterile. However, there was a sense of common purpose. Although they worked in a service system very different from our own, we could see our colleagues struggling with some similar issues: little funding, low morale, and the deep desire to reach out to others.

One of our members toasted us at the farewell dinner, saying: “To the DSPs like Michelle and Andrew, without them we are nothing, without them we can go nowhere, and without them there is no hope.”