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New Research on Lifestyle and issues(the text here is taken from a paper to be given to the Market Research Society Congress in March 2000) The Deaf People, Information and the Community has set up a unique study of deaf people's lives. Here is an extract from a paper to be delivered to the Market Research Society. Deaf people are usually invisible to the hearing community. They live their lives without sound and voice but are not physically separated from the hearing community. For deaf people, life in contact with the hearing community can be difficult. Using the "available" services is not as simple as it might seem. Rita does not like visiting her GP or the hospital, because of the communication problems. It has always been a nerve-wracking experience to go to see the doctor. She would prefer it if the doctor was deaf or was a hearing person with good sign language skills. On one occasion she did bring an interpreter but the interpreter was only translating the information, and it was not helpful in understanding what the doctor was saying. It is usually very stiff and unfriendly when she visits the doctor. It is often very awkward. Her doctor sometimes wrote things down, but Rita finds these brief notes frustrating and incomplete. Deaf people need to have more explained, just like hearing people. When she gets home, she is often still unsure of what the problem is. It can be very stressful and creates a lot of worry. Rita would prefer a more relaxed consultation with more time for the appointment itself. Also it would help to have deaf-friendly English (from the doctor) with visual, clear pictures and health leaflets to be provided. Rita is not unusual. Her experiences and feelings illustrate the many reported problems of deaf people in contact with services. Although we can claim that services are available they may not be accessible to groups such as deaf people. Finding out deaf people's views This national project (Deaf People, Information and the Community), is designed to answer some of the questions arising from the above review and to offer a detailed profile of deaf people’s lives in a way which will be of value to service providers into the next century. For the first time, researchers and suppliers can listen to deaf people. There are three major components to this project: the collection of interview data from the same structured sample twice a year for three years, the provision of telecommunications tools to deaf people which will allow them to connect with each other and the establishment of a dial-up information service. This presentation will concentrate on the first component. The target population is the members of the British Deaf community. These are deaf people living in the United Kingdom who are ‘culturally Deaf’. That is, they have been deaf from an early age and are users of British Sign Language (BSL). Linguistic research since the mid-1970s has established the validity of this language. The sampling frame was designed to reflect geographical distribution, gender, ethnic group, age, socio-economic group and marital status. The frame was based on the best available data from previous studies - which were very few - and from our knowledge of the deaf community after 20 years of research. The original sample was 240 but 4 people withdrew after the first interviews and so are not included here. The UK was divided into 12 regions and in each region, there was one or two deaf representatives (interviewers). Numbers of participants were matched to general population characteristics. Fifty-three percent were women and 47% were men. There is some regional variation in this as the cell sizes are smaller when broken down by region. Ninety-three percent were white, 3% Asian and 3% Afro-Caribbean. Most analysis is carried out on four age groupings: 18-29, 30-44, 45-59, 60-75 years. The composition of these groups closely matched the GHS 1996 sampling. In terms of employment, as we have noted, there is considerable evidence which indicates that deaf people are under-employed and tend to occupy the semi-skilled and unskilled categories; they are also more likely to be unemployed. This was the main consideration in creating the socio-economic group - the sample is therefore drawn from a lower socio-economic level than would be the case in a random hearing sample. The deaf representatives were chosen after application and interview and invited to Bristol for 2 days of training on interview techniques. This was repeated for each interview. The representatives were then supplied with a confirmed sample and names and addresses in their area. All face to face interviewing was done by deaf interviewers who use sign language based on a written script. All interviewing was to be completed in a four week period. Results on what were mostly closed questions, were sent to Bristol for data processing as soon as they had been completed. The work of analysis and reporting is still at an early stage and the information supplied here is a very small snapshot of a much larger data set on the themes: Deaf as disabled, health, communication, education, lifestyle In each theme, there has been a full live interview of 45 minutes with each person in the sample and this has already grown to a huge database of information which is beginning to be analysed in this year (2000). However, even this initial analysis of the results from our representative sample of 236 deaf people nationally (a 1% sample of the community of deaf sign language users) indicates interesting features of deaf life. In this extract, we have chosen to highlight two aspects - deaf life and health. With over 20 years of research on different aspects of the deaf community we have built up a good deal of knowledge of what it is like to be deaf - the fact that deaf people have the same intelligence as hearing people, the reduction in job opportunities as result of communication differences, the importance of the deaf club as a centre of deaf life and most importantly, the recent recognition of deaf people's language and culture in the resolution of the European Parliament. However, we have never been able to obtain a nationally representative sample to check many of these findings and to build the complete national picture. We can now provide this picture. Despite general mythology, deaf people are mostly born into hearing families (81%) and only 9% had both parents deaf. Cultural transmission and home experiences are very different for these two groups. Deaf people in hearing families may experience considerable language deprivation until they arrive in schools where there are other deaf people to sign to. Deaf people from deaf families have the advantage of communication in the language of their parents from an early age and so they become the keepers of deaf culture and deaf traditions. When deaf people marry or form a permanent relation, they tend to do so with another deaf person (87%). However, there is a general distribution of deaf people throughout the community as a whole and 22% claimed not to live within 5 minutes walk of another deaf person. As a minority group, deaf people marry into the community but do not form a geographic community - there is no deaf ghetto. Interestingly, in terms of aids to communication, 64% reported using a textphone everyday but only 38% said they used a hearing aid everyday. (Textphones are devices which can receive tones and translate them into letters allowing two textphone users to have a conversation. The system is old technology - from the 1970s - and is cumbersome, unintelligent and painfully slow, in comparison to speech or sign language). When asked about sources of information, over half of the sample report using teletext pages on their TV on a daily basis. To reach the deaf community, an effective way is to provide teletext information. More deaf than hearing people own a computer (44%: 27%) but 69% have never used the internet. We can expect this figure to change rapidly but deaf people's progress in the use of technology is often stifled by the lack of training or the lack of access to information in a form which they can use. Deaf people's reading of English is often reduced by difficulties in schooling and the fact that tuition has been in spoken language - which they cannot hear. Our sample shows the expected low job prospects of deaf people (under-employment in respect of intellectual capacity) - with the majority in manual or unskilled or semi-skilled occupations. At each age grouping, deaf people are less likely to report having qualifications (18% under 29 years old to 62% of people over the age of 50 years - nowadays there are more qualifications which can be aimed for). The figures for the General Household survey show that hearing people are 20-25% more likely to have qualifications. Despite the fact that deaf people are physically and intellectually capable, we can confirm that they experience great disadvantage because of the limitations in education, which have a knock-on effect on employment. Deaf people live with other deaf people but are part of the hearing community as a whole - there has been no special desire to create a deaf area of any city. However, deaf people's low levels of employment and the fact that training is often presented in spoken English, squeeze the community into a narrow band of disposable household income and social power. Deaf people tend not to have a voice. One area of considerable importance is health - not only in terms of the preservation of the person's well-being but in terms of access to information and to the services themselves. We can verify the availability of health services but it is not obvious that that these are accessible to deaf people. From childhood, the deaf child will have atypical experiences of visits to the doctor, where the parents will do all the talking and where the diagnosis proceeds almost without their involvement. Even as young adults, deaf people report taking a parent to the doctor's surgery with them. This might lead to lower levels of overall health or reduced contact with health services. Typically deaf people report problems in attending the doctor's surgery or the hospital. However, in the last year, 90% of deaf people had gone to the doctor, with 22% women and 10% of men having gone more than 10 times (comparable to the nearest GHS figures of 14% women and 10% men - who had been in the two weeks prior to survey). Deaf women were more likely to go to the doctor (over 40% more than 5 times in the last year). Geographically, there were many more visits to the GP in the East Midlands than in any other region (more than 60% had been more than 5 times). Younger people were less likely to go to the doctor, as might be expected. One aspect which is significant is the extent of preventative care. We asked the sample about "check-up" visits to the doctor, when they had reported less than 5 visits to the doctor. Surprisingly, 95% of those in London and 100% of those in the South West, claimed to have gone to the doctor for a check-up. These figures seem to go against the notion that visits to the doctor are a major problem for deaf people. Yet significant numbers still express dissatisfaction. Deaf women tend to be satisfied (77%) and older deaf people more so (60-75 years - 85%). However, 32% of young people are dissatisfied. Over a third of people in London, the South and South-East are dissatisfied. Relatively few (31%) reported obtaining health information from the doctor. While only 14% of hearing people had visited hospital in the last 3 months, nearly 50% of deaf people had made at least one visit to hospital in the last year. Females were much more likely to go to hospital. There are regional variations with deaf people in the West of England and Wales, and the East Midlands, much more likely to have gone to hospital. It seems that deaf people are much more likely to be ill or to have to go to the doctor than we might expect. Given that there is a general reporting of problems in consultation with someone who cannot use sign language, the figures are quite remarkable. The visits to the hospital also seem to be at a high rate. It is often said among deaf people that there is an alcohol problem with young deaf people. However, in this study, deaf people are significantly less likely to report drinking above the recommended level than hearing people. This is marked in the 25-44 and 45-64 year old groups - 25-44 years: deaf men 10% over-use; hearing (GHS) 30% over-use. 45- 64 years: deaf men 6% over-use; hearing (GHS) 26% over-use. The differences for women are considerably less but in favour of deaf women having a more restrained attitude to alcohol consumption. Deaf people on this measure are well within the targets set by the Health of the Nation strategy. We also asked the sample about smoking. Again deaf people are well within the figures for hearing people. Only 22% of deaf people smoke as compared to 28-29% of hearing people. The figure for men was much closer to the hearing figure 26% as compared to 29%, while deaf women were much less likely to smoke (17%). The extent of smoking was reported a little differently from the GHS but our calculations indicate again that even among deaf smokers, the extent is less than for hearing people. The average number of cigarettes smoked by deaf women each week is estimated at 56 as compared to 96 for hearing women smokers and by deaf men as 58 as compared to 111 for hearing males. As with alcohol deaf people seem to be on the right side of the strategy for a healthier nation and are less likely to be affected by these "vices". There is more to be discovered in this study which will gradually unfold in the year 2000.
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