Stefan Hoffmann is 31. He is from Cologne, Germany, and is presently working in Beijing, China. He graduated in Modern China Studies, Economics and Pol. Science. He has been active in the self-help movement since 1991 and is a member of the International Stuttering Association Board since 1998, working primarily on Outreach (Asia) and World Health Organization issues.
Dr. Li Sheng Li is an Associate Professor of The Rehabilitation Medicine Department of Capital University of Medical Science in Beijing, China. He is Vice Director of the China Rehab Therapy Association, and Director of The Hearing and Speech Therapy Department at the China Rehab Research Center. He has developed a special interest in Speech and Language Pathology, and is training a dedicated staff.
The population of China is roughly 1.1 billion people. Assuming an incidence of 1%, there are potentially 11 million persons who stutter, very few of whom are presently receiving any kind of trained, professional help. In order to understand the status of the person who stutters in China it is important to understand the context in which that person exists. After over 30 years of resisting the 'contaminating influence' of the outside world, China opened its doors to travel by tourists and foreign investment in the late 1970's. Twenty years later, the Chinese world has made immense changes.
Tourists from all over the world travel easily throughout the country. The problems of travel permits, dual currencies, poor transport connections, language barriers, and poor sanitation and service standards have significantly improved, at least in the major cities. As you travel down Chang'an Road in Beijing you cannot help but be impressed by the extensive construction projects underway in preparation for the 50 year anniversary of the founding of the Peoples Republic of China on October 1st., 1999. When completed it will be one of the most impressive avenues in the world. Tourist publications boast that 1/5 of the construction cranes in the world are presently located in Shanghai (alternately referred to as 'the Paris of the east' and 'the New York City of China'). The city's main thoroughfare, Nanjing Lu, reportedly has the highest concentration of people, buses, cars and bicycles in the world. All of the above made it very comfortable to be a 'foreigner' traveling in China. As I traveled around the country and spoke to many Chinese nationals, I soon discovered that if you scratch the glittering surface that China is striving to present, it remains a poor country, densely populated with a large, uneducated population and deep gaps between urban and rural levels of development. Deep seated changes in feelings and attitudes are occurring slowly. With the government's focus on catching up with the western world in the areas of technology, business, banking and construction, other issues such as individual health needs have not necessarily been given the same priorities.
Present day problems
There are a number of issues existing today that have an impact on the slow (sometimes nonexistent) awareness of and development of service delivery for persons with disabilities, communication disorders, and more specifically, persons who stutter (PWS). Due to the enormous population (13 million in Shanghai, 11 million in Beijing), food and shelter are ongoing problems. In addition, there are high, often hidden unemployment rates. For those lucky enough to have a job, wages are very low, although there are often subsidies for basic necessities that help some get along. The average monthly income in Beijing is approximately $100 (US); in Shanghai it is the equivalent of just under $200 dollars; in Xi'an, approximately $80. The men who lined the Beijing streets hoping to entice tourists to take a ride in their pedicabs earn the approximate equivalent of $8.00 (US) per month to live on. Our tour guide in Guilin earned the equivalent of $5.00 per day. He asked us to complete a customer satisfaction form on which we had to rate his performance as "good", "average" or "poor", making sure that we knew that if we rated him as "average", he would not be paid for the days he accompanied us. Three "poor" ratings, and he was out of a job. Health insurance is paid for by employers only in the case of state run units or companies, and some private companies, thus only a small percentage of the population actually carry health insurance. Even if they did, it would not provide coverage for speech therapy (assuming that professional services did, in fact, exist). The new found freedom in China has opened up exciting career opportunities for young people. Older people in the country who are not eligible for training in these areas have fewer opportunities, and often find themselves in a daily struggle for survival. Each person I spoke to stressed that while families were generally interested and caring, they were struggling with bigger issues than speech disabilities. While China rivals the United States in the number of cell phones in use, computers play a very small part, if any, in the everyday persons life. Outside of the major cities, all paperwork was done by hand. Thus, exposure to new ideas and current research appear very limited.
I was able to interview a number of people on the topic of stuttering and stutterers as I traveled around the country. All spoke English and were graduates of a university where they had majored in 'tourism'; thus I was speaking with young, well educated people. I would assume then, that they would be the most knowledgeable and enlightened group. Opportunities to interview others with whom I had contact (such as our drivers or hotel employees) were not possible due to the language barriers. I stress this point because it seems likely that had I been able to reach and speak to other Chinese citizens (such as farmers or persons from more remote areas of China) my questions would have met with even less knowledge and understanding of this topic.
With each interview I asked the following questions: Have you ever known anyone who stutters? (I often had to demonstrate what I meant by stuttering before they fully understood the question) What do you think causes it? Where would one get help in China if he or she stuttered? How would it be paid for? Would the fact that a person stuttered impact his or her employment opportunities?
The general consensus of those with whom I spoke was that if a child had a problem with stuttering, either their parents and grandparents would work with them at home, or teachers would give them "exercises" to practice until they were fluent. Only one person, a guide named David, indicated that he had ever had contact with a person who stutters. In fact, a sweet young lady that we met in the airport, who is presently majoring in English at a university in Wuhan, kept repeating that the government provided special schools for children with "disabilities". David told me about a young cousin who had stuttered. The child's parents explained to him that if he continued to speak that way the neighbors would think that he was "not being treated well at home", and that it was very important to "speak Chinese fluently". They worked with him until he "overcame it". David concluded that sometimes children are "stupid" and don't know what's best for them, and "if they try hard, enough they can overcome it." No one with whom I spoke would venture a guess at causation. With the exception of Lily, our guide in Xi'an, none knew of any professional help that might be available. Lily told us that approximately two years ago Xi'an's Northwest University had initiated a program in Speech Pathology. She promised to send me their catalog or the names of contact persons when school resumes in September. If in fact a person who stuttered could find some place to receive professional help, he/she would clearly have to pay for it himself. Given the income level of most Chinese residents, most thought it would be highly unlikely that money would be spent that way. On the issue of employment opportunities, all with whom I spoke agreed that the fact that the person stuttered would significantly limit employment opportunities. It seemed obvious to all that, given the high unemployment numbers, an employer would not have to hire someone with a 'disability' if they want to work in a factory, "Maybe it's ok, but (laughing) not in an office". Perhaps the following conversation best characterized the attitudes I heard expressed:
Author: Would being a stutterer affect a person's ability to get a job?
L: Certainly, because people wouldn't think they were intelligent.
Author: But their intelligence is not a problem
L. Yes, but there are too many healthy people without jobs.
Author: But stutterers are healthy, they just have trouble speaking sometimes.
L. Maybe they could get jobs like sewing that don't require thinking.
Author: But stutterers can think okay
L. But even if the employers know that they can think, they would not want to listen to them.
In Beijing I was fortunate to have the opportunity to meet with Dr. Li Sheng Li, Associate Professor of The Rehab Medicine Department of Capital University of Medical Science. Professor Li is also Vice Director of the China Rehab Therapy Association, and Director of The Hearing and Speech Therapy Department at the China Rehab Research Center. He has developed a special interest in Speech and Language Pathology, and is training a dedicated staff of approximately six in the centre and has trained more than 200 students from different parts of China since 1993 by holding two weeks courses each year. All of them are from general hospitals, rehab centres and special schools and more than 50% are also physicians. After agreeing to meet with me, Dr. Li requested that I prepare a presentation for his staff following our interview. Dr. Li acted as translator, although it was clear that a few of his staff understood varying degrees of English.
On the surface, the hospital looked similar to one you might find in a large city in the United States. A multidisciplinary team approach, including physical therapy, occupational therapy and speech therapy, is available when appropriate. Clinicians provide service for between 10-13 clients a day. I observed individual therapy being performed with a child with cerebral palsy, a language delayed child and an older gentleman with a traumatic head injury.
In addition to providing speech and language therapy, the staff in Dr. Li's unit test hearing, and when necessary, fit hearing aids. There are presently no training, credentials or licensing required to perform these services. Contact with professional colleagues in the city of Beijing itself, as well as throughout the country is very difficult, thus there is little networking going on. Travel to other countries is often impossible. Dr. Li indicated that he knew of other programs such as his in Sichuan Province, and in Wuhan, and he knew of a female physician in Shanghai who worked with a pediatric population. With no access to email, Dr. Li had minimal contact with these persons. He has, on limited occasions, traveled outside of China to attend conferences.
Access to current research is mimimal. In fact, Dr. Li and an associate have recently published a comprehensive textbook in Chinese on communication disorders, with a brief chapter on stuttering. The National Library (Beijing) listed only three references to stuttering. Two are originally in Chinese (Lin Feng and Li Ping, 1993, English Translation: "New and simple methods to quickly correct stuttering"; and Li Xia et al, "General discussion on correcting stuttering"). The third is a translated work of an article by Edward G. Conture and Paul J. Mallott, "Stuttering and your child: Questions and Answers." In addition, availability of materials for therapy is poor. Dr. Li evidenced concern that they had no 'tests' or 'norms' to utilize when providing service.
I spoke to Dr. Li's unit for a little over an hour, and was impressed with their sincere concern for the stuttering population and their thirst for current research-based information on causation and treatment efficacy. They asked intelligent, pertinent questions, many of which underscored how little information they really had. They asked questions such as, " how does one differentially diagnose between normal nonfluency and stuttering?; is the cause currently thought to be learned or psychogenic?; can the same treatment methods used with children be applied to adult stroke victims?; what procedures constitute a comprehensive evaluation?; what should go into a report?;" and finally, "is there any research presently being done in the United States?"
Until very recently, very little service was provided for persons who stutter. For the past year, a German citizen, Stefan Hoffmann, has been working for a German company in Beijing. Stefan is himself a stutterer who has been active in the International Stuttering Association (ISA). Stefan set out to meet people who "might work on raising awareness about the problem and who might later be the nucleus for a stuttering group in Beijing". His ultimate goals were to help initiate a Beijing Stuttering Self-Help Group and/or, later on, a China Stuttering Association with full ISA membership. In May, 1999, with the help of Dr. Li, he organized a "China Round Table Meeting on Stuttering Prevention and Therapy". Thirty persons attended, among them therapists, parents, the staff of a children's health care center, one teacher, journalists and three teenage stutterers. With materials provided by the Stuttering Foundation of America (SFA) a dialogue was begun and an agenda developed. The event was covered in the media by the journalists who had attended. These initial steps to raise awareness are promising. Dr Li reported that the number of telephone calls and personal enquiries to his unit rose significantly after the May meeting; he has heard from almost 40 persons who stutter. At this point, he is predominantly working with children; adult stutterers tend to be more reticent about discussing their difficulties in public.
Use of Traditional Chinese Medicine
When I asked Dr. Li if he recommended the use of traditional Chinese medicine in the treatment of stutterers (or for anyone with a communication disorder), his response was a clear and definite 'no'. It was with interest, then, that I responded to a recent item posted by a stutterer in Dalian, China, who purported to have found an "effective treatment" to cure the "disease" of stuttering and restore the stutterer to "normal entirely" through "traditional Chinese science medicine". This person claimed to have found "the disease cause and the effective treatment in 1995" but had no money or means of releasing the information at that time. He (or she) claimed a willingness to "prove to medical workers all over the world" that "stutter(ing) can be cured". I responded asking for information about his background and credentials, what he had determined to be the cause, how many persons were included in his 'study', the nature of the treatment and what exactly constituted 'traditional Chinese medicine'. His first response restated his original assertions and stressed that he had "sufficient experiences in curing stutter(ing) entirely. I found the exact cause by the theory of psychology and neurology of western medical science--some sedatives are used (in western medical science) however the treatment of traditional Chinese medical science is to adjust the basic function and the negative and positive balance of the body. So stutter(ing) can be cured entirely by Chinese medical treatment and not recur again." When I again pressed for more specific information, I received a short response stating "I cure stammer with china's herbs because the component of the herbs are too complex to cure yourself -- I can't give you the components".
Communication between myself and this person has been difficult due the language differences, and but I will continue to pursue the issue. At this time, however, his assertions remain unsubstantiated.
In conclusion, interest in and knowledge about assessment and treatment of stuttering in China are presently in their infancy. Given such major problems as an enormously large population to feed and house, significant unemployment, lack of insurance coverage and limited money on which to live, the average Chinese citizen is unlikely to seek appropriate service. In addition, cultural attitudes and lack of information on the subject have fostered limited understanding and inappropriate attitudes toward stutterers.
If one was inclined to seek help, the next problem becomes limited (if any) access to trained professionals. The profession of speech and language pathology itself is just beginning to emerge, but the absence of training standards, limited knowledge of and access to colleagues within China and research outside of China, are difficult barriers to breach. Increasing access to the internet will make new areas of information available. However, the language barriers will make optimum use of the medium difficult. While many with whom I came in contact spoke some English, few exhibited a level of expertise that would make translating articles an easy task.
Programs such as that initiated by Dr. Li and Stefan Hoffman are an excellent start. The significant increase in requests for service is evidence of the power of this type of round table symposium. Hopefully, the communication network between professionals able to provide service, and between professionals and those seeking service in Beijing will grow exponentially as a result. Professionals and laymen outside of China who are willing to share research, knowledge and experiences are sorely needed. Donations of tests, articles and materials would be helpful, although the task of translating them into Chinese is a problem at present.
I would like to thank my friend and colleague Dr. Xiaobo Yu for his interest and support in this project. He helped give me a perspective on the people and the country, and made this 'foreigner' feel comfortable in a strange and exotic land.