:KLWKHUWKH'HDI&RPPXQLW\"3RSXODWLRQ*HQHWLFV DQGWKH)XWXUHRI$XVWUDOLDQ6LJQ/DQJXDJH 7UHYRU$-RKQVWRQ American Annals of the Deaf, Volume 148, Number 5, Spring 2004, pp. 358-375 (Article) 3XEOLVKHGE\*DOODXGHW8QLYHUVLW\3UHVV DOI: 10.1353/aad.2004.0004 For additional information about this article http://muse.jhu.edu/journals/aad/summary/v148/148.5johnston.html Access provided by Penn State Univ Libraries (18 Jun 2015 05:29 GMT) W(H)ITHER THE DEAF COMMUNITY? POPULATION, GENETICS, AND THE FUTURE OF AUSTRALIAN SIGN LANGUAGE A TREVOR JOHNSTON JOHNSTON IS AN ASSOCIATE PROFESSOR AND JAPAN-AUSTRALIA FRIENDSHIP FUND FELLOW IN SIGN LINGUISTICS, RENWICK COLLEGE, ROYAL INSTITUTE FOR DEAF AND BLIND CHILDREN, UNIVERSITY OF NEWCASTLE, SYDNEY, AUSTRALIA. CCORDING TO ENROLLMENTS in schools for the deaf and data from the national census and neonatal hearing screening programs, the incidence of severe and profound childhood deafness in Australia is, and has been, less than commonly assumed. Factors implicated include improved medical care, mainstreaming, cochlear implants, and genetic science. Data for the United States, Britain, and other developed countries seem consistent with those for Australia. Declining prevalence and incidence rates have immediate implications for sign-based education, teacher-of-the-deaf training programs, and educational interpreting. There are also serious consequences for research, documentation, and teaching regarding Australian Sign Language (Auslan), and for the future viability of Auslan. Prompt action is essential if a credible corpus of Auslan is to be collected as the basis for a valid and verifiable description of one of the few native sign languages in the world with significant attested historical depth. Very few countries have good data extending over many decades on the number of people in their population who are deaf or hearing impaired. Differing definitions of hearing impairment and deafness and differing criteria for inclusion or exclusion from assessment also make what data is available difficult to compare from one point in time to another and from one country to another. The definition of hearing loss is a case in point. Some definitions include “mild” as a separate category, while others conflate it with “moderate.” Also, some definitions apply different thresholds to the same category. For example, profound deafness may mean hearing loss at the 91 dB level or greater or it may mean 95 dB in the better ear. As I am concerned in the present article with the size and viability of the signing Deaf community from a linguistic point of view, one should remember that whatever definition is used, it is only children with an early and profound hearing loss, and many with an early severe hearing loss, who are likely to be lifelong users of sign language. In many early sets of data, severity of loss is simply not mentioned, or is defined, instead, with a single general descriptor, such as “deaf and dumb.” A related problem is a scarcity of studies of the signing Deaf community—for the purpose either of ascertaining 358 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF numbers or establishing language use (primary or secondary). It is important to remember that there are significant numbers of hearing people who are users of various community sign languages. Indeed, there are probably as many “native sign language users” who are hearing (having grown up using sign language with their deaf parents) as there are deaf native sign language users. However, for the purposes of the present article, which is primarily concerned with the implications for sign language research, these hearing users of sign languages have little relevance. The Signing Deaf Community: Size and Incidence Previous Estimates In 1986, two estimates of the size of the signing Deaf community in Australia were published, both in The Gallaudet Encyclopedia of Deaf People and Deafness (Van Cleve, 1987). One was based on the number of subscribers to the Victorian Deaf Society newsletter; this number was then extrapolated to Australia as a whole. The estimate was 9,000 to 9,500 deaf signers (Flynn, 1987). The second estimate was approximately 7,000 (Power, 1987). However, no explanation was given of how the second figure was obtained. In 1989, I suggested that the figure was about 10,000 (Johnston, 1989a, 1989b). This number was based on the widely cited estimate in the professional and educational literature on deafness that approximately 1 person per 1,000 (0.1%) in developed countries was severely to profoundly deaf. This figure had received some support from a profile of the size of deaf populations around the world (Schein, 1987). However, I factored in the observation that many deaf people were educated orally, had successful assisted hearing, and did not use sign language. I reasoned that the Australian signing Deaf community must therefore represent a subset of an assumed population of severely to profoundly deaf people of approximately 16,000 (0.1% of a population of 16 million in 1987). Flynn’s 1987 estimate of 9,500 appeared to suggest the size of this subset, and I used this as the basis for the figure of “no more than” 10,000. nity (Deaf Society of New South Wales, 1998). Indeed, in this second study, only 9 years later, the Society estimated that the number was most likely to be between 1,261 and 2,522 (extrapolating to approximately 3,900 and 6,900 nationally). The most thorough study of the size of the signing Deaf community in Australia was conducted by Hyde Table 1 Estimates of the Size of the Signing Deaf Community in Australia Source Total Population of Australia (millions) Signing Deaf Community Implied Prevalence Rate (per thousand) 15.8 (1985) >9,500 0.60 15.9 7,000 0.40 16.0 (1987) <10,000 0.62 Deaf Society of New South Wales, 1989 16.6 >15,000 0.90 Hyde & Power, 1991 17.2 >15,400 0.89 Deaf Society of New South Wales 6.3 (NSW), 1998 (1997, NSW only) 1,261–2,522 0.20–0.40 >15,000 0.79 Flynn, 1987 Power, 1987 Johnston, 1989a Ozolins & Bridge, 1999 The estimate of 5,000 severely to profoundly deaf people in the state of New South Wales who “would be considered as likely clients of the Society”—and thus likely users of Australian Sign Language (Auslan)—was published by the Deaf Society of New South Wales in 1989 (p. 2). This figure would extrapolate to a national total of approximately 15,000. However, it should be noted that the researchers for the Society’s second demographic study experienced some difficulty in locating the number of signers that their first study would have led them to believe were living in the commu- 18.9 and Power (1991). This study used a “snowball” technique in which each signing deaf person directly contacted was asked to identify other deaf people who also used sign language. After duplicates were eliminated from the resulting database, an analysis of the results led to an estimate of 15,400 “deaf users of signs” in Australia (p. 7). After careful consideration of the various estimates and a discussion of the Australian census of 1996, Ozolins and Bridge (1999) also suggested that the total number of deaf Auslan users probably exceeded 15,000. 359 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? Table 1, which summarizes these various estimates, includes a calculation of the implied prevalence rate of deaf sign language users in the population at the time for which each estimate was made. 1982 Survey by the National Acoustic Laboratories A survey of the incidence of childhood deafness in Australia between 1949 and 1980 was published in 1982 by Upfold and Isepy. The survey was based on annual data from the National Acoustic Laboratories, which have provided free hearing aids to all Australians under the age of 18 years since 1948. Because hearing aids have been provided even in the most marginal cases and always as early as practicable, few children were excluded from the survey. Consequently, the figures “reflect the maximum pos- sible number of cases” (Upfold & Isepy, 1982, p. 325). The survey revealed a total average incidence of 2.6 per 1,000 live births (range 1.9 to 3.6) for those children in this group born before 1974. Significantly, the survey revealed that rubella was causal in more than 11% of all cases (there was a rubella epidemic in Australia between 1964 and 1970) and that deafness caused by rubella was Table 2 Total Number of Children Fitted With Hearing Aids, Total With Rubella Deafness, Birth Years 1949–1980a Birth year Children (n) Cases per 1,000 Severely deaf (n) Profoundly deaf (n) Likely signersb (n) Rubella cases (n) 305 335 419 444 421 417 507 475 509 638 663 574 650 639 644 834 769 798 737 723 733 738 619 553 519 428 359 301 190 121 86 31 2.14 1.83 2.26 2.34 2.17 1.87 2.50 2.29 2.41 2.95 3.01 2.93 3.28 3.14 3.10 3.95 3.58 3.62 3.31 3.17 3.16 3.41 2.52 2.48 2.29 1.86 1.53 1.27 0.79 0.50 0.35 0.37 70 77 96 102 97 96 117 109 117 147 152 132 150 147 148 192 177 184 170 166 169 170 142 127 119 98 83 69 44 28 20 7 52 57 71 75 72 71 86 81 87 108 113 98 111 109 109 142 131 136 125 123 125 125 105 94 88 73 61 51 32 21 15 5 87 95 119 127 120 119 144 135 145 182 189 164 185 182 184 238 219 227 210 206 209 210 176 158 148 122 102 86 54 34 25 9 UAc 1949 1950 1951 1952 1953 1954 1955 1956 1957 1958 1959 1960 1961 1962 1963 1964 1965 1966 1967 1968 1969 1970 1971 1972 1973 1974 1975 1976 1977 1978 1979 1980 UA UA UA UA 11 29 32 44 79 66 26 41 39 61 177 115 126 98 63 124 125 73 35 52 23 59 53 14 4 4 3 Notes. Adapted from Upfold & Isepy (1982, p. 324). a Known cases as of March 31, 1981. b Estimates of likely signers include all profoundly deaf children and half of all severely deaf children. c UA, unavailable. 360 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF most likely to be severe (61–90 dB) or profound (91 dB or over). Also, the survey revealed a dramatic drop in the number of cases of rubella-induced deafness—and, hence, of linked cases of severe and profound deafness— after 1970, when vaccination against rubella was introduced, as well as an overall and equally dramatic drop in the number of all cases of hearing impairment (see Table 2). This means that by the end of the period in question, and especially after 1970, not only had the incidence of all forms of hearing impairment been greatly reduced, but the proportion of individuals with severe and profound deafness had also been reduced. In terms of the overall severity of the impairment, Upfold and Isepy (1982) reported that approximately 40% of cases were of severe or profound deafness (17% profound, 23% severe). If one uses the figures they provide, the incidence of all forms of hearing impairment for these years can be estimated, as can the number of severely and profoundly deaf children (see Table 2). In sum, the survey based on figures from the National Acoustic Laboratories suggests that the incidence of hearing impairment between 1949 and 1980 increased markedly during the years of the rubella epidemic (1964– 1970), averaging 2.55 in the decade before the epidemic, 3.46 in the years of the epidemic, and 1.4 in the decade after the epidemic. Indeed, by 1980, the incidence rate for all types of childhood deafness was 0.37, a nearly 10fold decrease from the peak of the rubella epidemic, in 1966. In the ensuing 24 years, the rate has quite possibly remained at or below that level. Overall, these Australian figures do suggest that a rate of 1 per 1,000 (approximately 40% of 2.6 per 1,000) is not an unrealistic estimate for the inci- dence of severe and profound deafness in young children until the mid1970s. In a earlier study, Upfold (1979) had estimated that the incidence for all types of deafness was 2.8 per 1,000. Upfold documents a precipitous decline in cases of severe and profound deafness between 1971 and 1980 due to the virtual elimination of rubella and the control of many other causes of childhood deafness. Universal Neonatal Screening The advent of universal neonatal screening for hearing impairment in some developed countries has, in recent years, enabled a more accurate record of early-childhood hearing impairment and made possible more reliable calculations of the underlying incidence of hearing impairment. In the United States, 35 of 50 states have mandated universal neonatal screening, and in the United Kingdom, pilot programs have been established at 20 sites (Russ, 2001). In Australia, universal neonatal screening programs have only been established in the states of An overview of the universal neonatal screening program in the U.S. state of Colorado revealed an incidence of overall hearing impairment of 40 dB or more in the better ear in young children at 0.9 to 1.0 per 1,000 (Mehl & Thomson, 2002). StredlerBrown (2003) suggests that the underlying rate of all types of hearing impairment appears to be considerably higher than 1 per 1,000 births. After approximately 10 years of the Colorado screening program, the incidence of overall hearing impairment in young children averaged 2.5 per 1,000 births in that state. Of these, children with mild, moderate, or severe deafness accounted for 90% of all cases of early-childhood hearing impairment, 30% for each category (StredlerBrown, 2003; Yoshinaga-Itano, Coulter, & Thomson, 2000). In other words, the rate of profound deafness, at 10% of the total, appears to be approximately 0.25 per 1,000 births (see Table 3). A recent study by the Wessex Universal Hearing Screening Trial Group has Table 3 Incidence of Types of Infant Hearing Impairment in U.S. State of Colorado, Based on Universal Neonatal Screening Types of hearing impairment Rate per 1,000 live births All Mild (25–40 dB) Moderate (41–70 dB) Severe (71–90 dB) Profound (>95 dB) Sources. Stredler-Brown, 2003; Yoshinaga-Itano et al., 2000. Western Australia and New South Wales. Recent reviews of some of these programs appear to support the observations made by Upfold and Isepy (1982) regarding underlying incidence rates up to the mid-1970s in Australia and, indeed, likely projections beyond the 1980s. 2.50 0.75 0.75 0.75 0.25 Percentage of all hearing impaired infants 100% 30% 30% 30% 10% identified similar rates and proportions of severity of hearing impairment in the United Kingdom, specifically, 0.9–1.0 per 1,000 for hearing impairment of 40 dB or greater in the better ear (Wessex Universal Hearing Screening Trial Group, 1998). The New South Wales program 361 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? commenced in late 2002, and it is too early to glean any data or trends from that program. A review of the first 17 months of the Western Australian program revealed a incidence rate of less than 0.7 per 1,000 for congenital bilateral permanent hearing loss of 35 dB or greater (Bailey, Bower, Krishnaswamy, & Coates, 2002). It may well be too early to take this rate as an accurate measure of the incidence of hearing impairment in Western Australia, a geographically large state with the screening program serving approximately 45% of all babies born there (Bailey, Bower, Gifkins, & Coates, 2002). Moreover, as Schein (2001) cautions, rates can and do vary enormously by region in geographically large countries such as the United States (and, possibly, Australia). Nonetheless, a rate under 0.7 per 1,000 would not be surprising, given the implied underlying incidence rates up to the mid-1970s derived from the National Acoustic Laboratories study, as well as the likely projections beyond the 1980s based on these figures for the 1970s. In sum, the prevalence of hearing impairment appears to be both greater and lesser than the earlier, commonly cited figure of 1 in 1,000 in developed societies. The rate is higher insofar as improved diagnostic testing is revealing many more cases of mild to moderate hearing loss that would have gone completely undetected in the past or, at least, would have remained undetected until much later in life. The category “mild” (hearing loss of 25– 40 dB) is capturing a population not described in the National Acoustic Laboratories study, and the Western Australian criteria include children with hearing loss of 35 dB or greater. Significantly, the category of mild hearing impairment, according to Stredler-Brown (2003), accounts for 30% of total cases. Universal neonatal screening is also revealing that hearing impairment continues to emerge in the later years of childhood. Conversely, the rate is much lower insofar as the proportion of profoundly deaf children among all children with hearing impairments appears to be smaller than previously thought, just 10%. One should also remember that this 10% is a subgroup of an enlarged hearing impaired population, now including children with mild hearing impairment. Clearly, improved documentation and diagnostics and the changing etiology of deafness throughout the past century or so (e.g., the management of rubella) are all contributing to this outcome. The more recent estimates of an incidence rate of 0.25 per 1,000 for profound deafness based on universal neonatal screening in the United States is comparable to the 0.3 rate (after allowing for the “mild” category) that the National Acoustic Laboratories survey found prior to 1980. Today, the rate is likely to be even lower, as there is every reason to believe that the already historically low Australian incidence and prevalence rates have continued to the present. The preliminary results for the Western Australian screening program, showing an incidence 0.7 per 1,000 for all types of permanent childhood hearing impairment, suggest that this expectation is well founded. One should thus regard the recent research from Britain and the United States as suggesting what the upper limit of such rates is likely to be in Australia. British Study of the Incidence of Permanent Childhood Hearing Impairment A study of the incidence of permanent childhood hearing impairment between 1980 and 1995 in the United Kingdom was published in 2001 (Fortnum, Summerfield, Marshal, Davis, & Bamford, 2001). The survey was based on questionnaires sent to hospital-based otology and audiology departments, community health clinics, and education services for children with hearing impairments. Its main findings were that incidence increases significantly with age (i.e., to 16 years) and that the universal neonatal screening may not fully capture the extent of permanent childhood hearing impairment. The figures for incidence based on neonatal screening alone need to be revised upward to accommodate this finding. They show that the findings have implications for the need for repeat testing and the provision of services for children in whom hearing impairment manifests itself only later in childhood. The British study found that prevalence rose from 0.91 for 3-year-olds to 1.65 for older children (ages 9–16 years), with adjustments for potential underascertainment being 1.07 to 2.05, respectively (Fortnum et al., 2001). The important observation in determining the size of the signing Deaf community is not so much that there was an unexpected increase with age in the prevalence of childhood hearing impairment, but that the overall prevalence rates since 1980 (derived from either the lower end of the range or from the higher latest estimate from the British study) are both lower than previous studies have revealed. They are, however, in accordance with, and perhaps even higher than, the rates one would expect post-1980 from the National Acoustic Laboratories study. (It should be noted that the National Acoustic Laboratories study has built in this factor. The counts for hearing impairment are based on the number of children who received hearing aids, at any time up to the age of 18 years.) 362 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF In other words, the cited rates of 1.07 and 2.05 are for all types of hearing impairment. The breakdown of the severity of impairment in the British study is actually similar to that for the National Acoustic Laboratories study: approximately 20% for profound (>95 dB), 20% for severe (71– 95 dB) and 60% for moderate (>40 dB). In other words, post-1980, no more than 40% of a incidence rate of 1.07 per 1,000 (2.05 adjusted) are likely to be severely or profoundly deaf (>71 dB). This is equivalent to 0.49 per 1,000 (or 0.74 at the 2.05 rate) for the category of severely or profoundly deaf, and a low of 0.26 per 1,000 (or 0.39 at the 2.05 rate) for the category of profoundly deaf. If one allows for the differing criteria for hearing loss thresholds, one can see from Table 4 that the National Acoustic Laboratories figures for incidence rate are similar to, if slightly higher than, the cited U.S. or British rates. This may reflect the fact that the National Acoustic Laboratories rates are based on an earlier period. The Census There have been several censuses taken over the past 11 decades in which data relevant to the determining the size of the Australian signing Deaf community have been collected: a census of the Australian colonies (1891), the census of the state of Victoria (1901), the first three national censuses undertaken after federation in 1901 (1911, 1921, and 1933), and the last two national censuses (1996 and 2001). The five earliest censuses contained a question as to the presence of “deaf and dumb” people or “deaf-mutes” in households and institutions. The last two censuses contained a question as to the language used in the home (individuals were invited to select from a list or nominate, in an “other” box, the language they used in the home, if that language was not English and was not listed). From Table 5, one can see that the prevalence of severe to profound deafness according to these figures ranged from a low of 0.24 per 1,000 (1996) to a high of 0.40 per 1,000 (1911). Severe to profound deafness was the level of hearing loss that most commonly led to individuals being described as “deaf and dumb” or “deaf mute” in the 19th and early 20th centu- ries. Such a level of hearing loss would mean that most of these individuals would have used a signed language as their primary or preferred language. Nonetheless, there is a considerable difference between the implied prevalence rates based on the census and the 0.89 rate implied by the figure of 15,400 (Hyde & Power, 1991), which has been the definitive estimate of the size of the signing Deaf community in Australia for more than a decade (see Table 5). In 2001, a total of 5,305 people reported that they used “some form of sign language” in Australia’s national census, while a surprising 11,860 reported “non-verbal communication.” This latter statistic represents an almost 10-fold increase from the figure for 1996, when only 1,435 reported “nonverbal communication.” Data from the National Acoustic Laboratories and neonatal screening programs, presented above, give one cause to regard this increase as an anomaly. There is no good reason to believe that respondents were referring to a Deaf community signed language by using this descriptor. With respect to census figures in general, it is a long-held belief in the Table 4 Computing the Incidence of Childhood Hearing Impairment: Universal Neonatal Screening vs. Surveying Types of impairment All Mild (25–40 dB) Mild-moderate (<60 dB) Moderate (41–70 db) National Acoustic Laboratories survey, Australia Rate % 2.605 100.0% 1.524 Severe (61–90 dB) Severe (71–95) dB) 0.614 Profound (>90 dB) Profound (>95 dB) 0.453 Colorado (U.S.) universal neonatal screening Rate % 2.50 100% British survey, neonatal (adjusted) British survey, childhood (adjusted) Rate 0.91 (1.07) % 100% Rate 1.65 (2.05) % 100% 0.75 30% 0.75 30% 0.45 (0.60) 55% 0.89 (1.21) 59% 0.75 30% 0.20 (0.22) 20% 0.35 (0.41) 20% 0.25 10% 0.26 (0.27) 25% 0.39 (0.44) 21% 58.8% 23.7% 17.5% Sources. Australia: Upfold & Isepy (1982). Colorado (U.S.): Stredler-Brown (2003), Yoshinaga-Itano et al. (2000). Britain: Fortnum et al. (2001). 363 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? Table 5 Australian Census Data and Deafness Prevalence Rates a Year Region Population (millions) Descriptor Number Implied prevalence rate (per thousand) 1891 Australia 3.2 “deaf and dumb” 1,200a 0.37 1901 Victoria 1.2 “deaf mutes” 410 0.34 1911 Australia 4.6 “deaf and dumb” 1,852 0.40 1921 Australia 5.6 “deaf and dumb” 1,855 0.33 1933 Australia 6.6 “deaf mutes” 2,326 0.35 1996 Australia 17.9 “Auslan,” “sign language” (+ “non-verbal communication”) 4,425 (5,860) 0.24 (0.32) 2001 Australia 18.9 “Auslan,” “sign language” (+ “non-verbal communication”) 5,305 (17,165) 0.28 (0.90) Love (1896, p. 214). Deaf community, and among educators of the deaf and other professionals who work with deaf people, that the size of the Deaf community has been consistently and substantially underreported. Indeed, concern and confusion about numbers as a result of the census have a long history. In early January 1904, there was an exchange in the letters-tothe-editor columns of two Melbourne newspapers, The Argus and The Age, regarding the numbers of deaf people in Victoria as noted in the 1901 census and various other estimates. Similarly, after the 1933 census, the chair man of the Melbourne Programme Committee for the 1934 Congress of the National Council of the Deaf of Australia, James Johnston (incidentally, my grandfather), suggested in a letter on behalf of the committee that the item “a more reliable census” be added to the agenda of the congress (James Johnston, personal communication, September 20, 1934). Finally, in the March 2003 issue of AAD Outlook, the newsletter of the Australian Association of the Deaf (AAD), the 2001 census figures were questioned. The AAD maintained that there were more than 16,000 deaf Auslan users. Ozolins and Bridge (1999) echoed Hyde and Power (1991) when they argued that the Australian census had been consistently unreliable and had underestimated the number of “deaf and dumb” (the label used in the early part of the century) and sign language–using (the descriptor used in the census of 1996) individuals in the country. With respect to the 1996 census, for example, Ozolins and Bridge suggested that underreporting would have been common because of the potential misunderstanding of the reference to language “spoken in the home.” Auslan, they suggested, was perhaps regarded as “signed” and not “spoken” by many deaf individuals, as well as being regarded as a (Deaf) community language, not a “home” language (p. 8). However, the implied rates from the census and the kind of longitudinal data from the National Acoustic Laboratories or British studies of childhood hearing impairment seem not to be vastly different. Exactly how inaccurate the census figures are is thus open to question. Fortunately, a fortuitous test of the reliability of the various censuses presents itself through enrollment data available from Australia’s main schools for the deaf. Enrollments in Schools for the Deaf Virtually all schools for the deaf in Australia are situated in the six state capitals, and until the mid-to-late 20th century one central residential school was the only school solely for the deaf, or by far the largest such school, in each of these cities. The first two of these large schools were established in Sydney and Melbourne in 1860. By the beginning of the 20th century, most deaf children requiring special education would have been receiving it in one of the central residential state schools. Thus, if the numbers of deaf children enrolled in these schools is known, one has a potentially good estimate of the numbers of signing deaf people in the country. Fortunately, most of the central schools for the deaf celebrated their centenary sometime during the 20th century with special publications that listed the names of all of the students enrolled in any given year (Barkham, 364 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF 1974; Burchett, 1964; Hough & Knust, 1993; Western Australia School for Deaf Children, 1996). (Though no special centenary publication exists for New South Wales, exact enrollment figures have been retrieved from the original register of the relevant school.) It is a simple matter to calculate a cumulative total from the beginning of the century to estimate how much the signing deaf population had increased from an initial baseline number (with allowances for deaths) to a given figure for any year up to the last common year for which such data are available, 1954. (A weighting of 20% has been made to these figures: 5% for the state of Tasmania, for which no centenary publication or other data source is available, and a generous 15% for children in small private or Catholic schools for the deaf.) From the enrollment data, it can be calculated that the prevalence of hearing impairment and deafness great enough to warrant attendance at a special school for the deaf averaged 0.42 per 1,000 from 1900 to 1954 (or 0.51 weighted). After 1954, the move toward mainstreaming began in earnest, accelerating rapidly until the end of the 1970s. Consequently, 1954 is not only the last year for which enrollment data across the country is easily available for these large special schools for the deaf, it is probably at the beginning of an era when these schools could no longer be said to account for the vast majority of severely and profoundly deaf children receiving an education (see Table 6). Beyond 1954, enrollments cease to be a possible surrogate marker of the annual growth, and thus size, of the signing Deaf community. From the mid-1950s, Australian education authorities adopted mainstreaming with great enthusiasm. Australia now has one of the highest rates of mainstreaming of hearing impaired and deaf students in the world (Power & Hyde, 2002). Despite the fact that many severely and profoundly deaf students failed to achieve the language and educational outcomes expected and hoped from this approach, mainstreaming has nonetheless meant that significant numbers of these children did not grow up using Auslan; neither do many mix and identify with the signing Deaf community. In addition to simply reducing the numbers of potential signers, mainstreaming has also had the important effect of seriously disrupting the generational and peer transmission of Auslan. Thus, from the linguistic point of view, mainstreaming has also negatively affected the integrity, and perhaps the long-term viability, of the already numerically reduced signing community. Table 6 Deaf Signers: Enrollments and Census Figures Compared Year 1901 1911 1921 1933 1946 1949 1954 Cumulative totals by adjusted enrollments 1,258 1,567 1,717 2,113 2,629 2,951 3,145 Census figures 1,258 1,852 1,855 2,326 — — — A Revised Estimate Of critical importance in considering the size of the signing Deaf community is the fact that the majority of children with hearing impairment have a mild or moderate hearing loss—some 60%—and with hearing aids and targeted and specialist educational programs, they can and do function perfectly adequately using speech and hearing. Few have any need for or desire to use sign language. Of the remainder, only 30% are severely deaf, and many of them are able to benefit from hearing aids and special oralbased educational programs. However, many of these severely deaf children whose education and “habilitation” began as almost completely oral, without any signed input, have acquired sign language later in childhood or in early adulthood. Of the remaining 10% of hearing impaired children (i.e., those who are profoundly deaf), perhaps the majority do not benefit from assisted hearing devices and an exclusively oral approach to education and language learning. They are likely to be early sign language users or to become sign language users as they grow up. Most important, the general trend throughout the 20th century—failures notwithstanding—was for hearing aids to improve in quality and reliability, and for their use to begin earlier and earlier in life (in part as a result of early detection). Thus, a counterbalance to the “failure rate” has been the overall impact of hearing aid technology in lowering the threshold at which residual hearing may be used for the development of effective speech and listening.2 With these assumptions in mind, it is now possible to give a revised estimate of the size of the Australian signing Deaf community. Once again allowing for deaths,3 one may extrapolate beyond the 1954 figures arrived at from enrollments in schools for the deaf (see Table 6) by using the numbers of children fitted with hearing aids each year by the National Acoustic Laboratories between 1949 and 1980. From 1980 onward, one may use estimates based on the recent neonatal screening prevalence figures for hearing impairment. I use a figure of 0.3 365 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? per 1,000 derived from Fortnum et al. (2001), representing 30% of all of the early childhood rate of 1.07 (all of the 20% of cases of profound deafness and half of the 20% of cases of severe deafness; see Figure 1). Using this method, one arrives at an estimated minimum signing deaf population in 2001 of approximately 6,500 individuals. Once again, as was shown in Table 6, the extrapolated cumulative totals are similar to the census figures for 1996 and 2001. This lends further support to the reliability of the census figures—though somewhat conservative, they may not greatly underestimate the true size of the signing Deaf community after all. Therefore, the disparity between the accepted figure of “in excess of 15,000” established by Hyde and Power (1991) and this estimate cannot be ignored, and the anomaly is not easily resolved. In order to account for this discrepancy, one may argue that many more severely deaf children become members of the signing Deaf community than I have assumed. One possibility, for example, is that there may have been many more children with severe deafness, and even moderate hearing impairment, than actually attended the large central schools for the deaf or the schools provided by the Catholic education sector. As a consequence, many more would have grown up to become users of Auslan than is assumed. However, this seems unlikely, as the regular school system during the first half of the 20th century was completely unequipped to deal with children with significant hearing impairments. Another possibility is that many more severely deaf children in the second half of the century, particularly between 1949 and 1980, gained little benefit from their mainstreamed and oral education than I have allowed for. (I have assumed that all of these cases of profound deafness resulted in individuals who were or would be users of Auslan and members of the extended signing Deaf community, but only half of all cases of severe deafness. This is the basis of the figures in Table 2. However, even if I calculate on the basis of a “worst case scenario” that all severely and profoundly deaf children Figure 1 Number of Signing Deaf People in Australia Throughout the 20th Century 366 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF gained little benefit from hearing aids, mainstreaming, and oral education (effectively 40% of all cases of hearing impairment in children are severe or profound losses, according to studies I have cited in the present article), the 1980 and 2001 figures are still lower than the figure of 9,500 suggested by Flynn (1987), and considerably lower than the figure of 15,400 from Hyde and Power (1991): that is, 7,897 in 1980 and 8,834 in 2001. (It has been suggested that Flynn’s estimate may have failed to account for the fact that, at that time, many deaf people who lived in other states received the Victorian Deaf Society newsletter in addition to their own state-based newsletter. It was a very popular source of information on the national Deaf community, not just the one in Victoria.) Finally, one may even wish to take the adjusted higher overall prevalence rate of 2.05 found in the British study for the period after 1980 and extrapolate using a higher rate of 0.8 for all cases of severe and profound deafness. (Both the enrollment figures and the National Acoustic Laboratories figures provide no reason to do so before this time.) The assumption is that children diagnosed later in childhood are equally likely to use sign language. The resulting notional size of the signing Deaf community in 2001 would thus be 10,982. Not only do both these adjustments still leave a wide discrepancy with Hyde and Power (1991), they also seem unrealistic. First, it is contrary to all expectations that the overall incidence of hearing impairment, especially severe and profound, should actually be higher in the last 2 decades of the 20th century than during the first 8 decades (as indicated by enrollment figures and figures from the National Acoustic Laboratories ). Indeed, the recent Western Australian figures I discussed above suggest an incidence rate based on neonatal screening as low as 0.7 per 1,000 for all types of permanent childhood hearing impairment. Second, despite the numerous and well-known instances of the failure of oralism with assisted hearing, not all severely or profoundly deaf children fail at this approach. Moreover, because hearing aid technology has improved since the 1980s, an increasingly smaller proportion of these children would have grown up using sign language. Third, a smaller percentage of cases of profound deafness manifest themselves later in childhood. The later the emergence of the hearing problem and the less severe it is, the less likely the individual will be of becoming a user of sign language. Thus, none of these adjustments are sufficient to make up the shortfall; nor are they fully convincing. All in all, the assumptions underlying the numbers in Figure 1 appear robust, and the census figures throughout the century appear reliable, if low. It would appear that the Power (1987) estimate of 7,000 may well have been the most reasonable to date. Medicine, Biotechnology, and Genetics Rubella It appears that the dramatic reduction in the incidence of all types of deafness recorded by Upfold and Isepy (1982) in Australia by 1980 was due primarily to the control of many diseases that cause hearing impairment, especially rubella as a result of the discovery and introduction of a vaccine. Any consideration of how to interpret changing incidence and prevalence rates in terms of estimating the size of the signing Deaf community at various points in time must take the spe- cific consequences of rubella into account. As I have already noted in the present article, rubella not only dramatically increases the overall rate of hearing impairment, it is also responsible for a disproportionately large number of cases of severe and profound deafness. The control of rubella is also associated with a declining rate of profound deafness. Thus, the reduction in the number of new potential members of the signing Deaf community may be much more significant than the “raw” numbers I have presented would imply. Multiple Disabilities and Premature Births The full extent of the decline in the number of profoundly deaf children after the 1980s has been masked by a subsequent increase in the survival rates for other diseases and events that had hitherto fatal outcomes. This resulted in a radical change in the composition, not just the size, of the population of newly identified severely and profoundly deaf children. A large number of these children had more than one disability. In other words, since the early 1970s the cohort of severely and profoundly deaf children with additional disabilities has grown in absolute numbers and as a proportion of all severely and profoundly deaf children. A significant proportion of this increase can be attributed to the increasing numbers of premature births and the associated improved survival rates. A large number of cases of severe and profound hearing impairment, particularly those with additional disabilities, are now attributable to complications of premature birth. One may thus be easily misled by raw figures— the rise in the number of premature births has masked the fact that many of the traditional causes of deafness, 367 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? possibly apart from genetic inheritance, have become less important factors in the etiology of deafness in the last 20 years. Interestingly, recent advances in the understanding of the causes of premature births (such as the role of reduced levels of progesterone or the levels of a muscle-relaxing protein) may soon contribute to treatments that may directly address this problem and, as a consequence, lead once again to reduction in the number of children with hearing impairments (and other disabilities). From the linguistic point of view, most of these new cases of severely and profoundly deaf children with multiple disabilities are unlikely to be a source of competent and fluent Auslan users for the signing Deaf community. If medical understanding of the causes of premature birth is to arrest and even reverse its frequency or the severity of its adverse consequences, even this consideration may become somewhat irrelevant. But either outcome is likely to reduce the number of future sign language users. Rate of Cochlear Implantation Rates of cochlear implantation of severely and profoundly deaf children in Australia are reported to be very high and to be rising rapidly. If one considers Australia’s birthrate, and then compares the estimated number of children born with hearing impairment with the number of cochlear implantations performed on young children, some idea may emerge of the likely current incidence of the procedure. The Sydney Cochlear Implant Centre (SCIC) of New South Wales, which performs most of the cochlear implants in that state, reported that approximately 56 implantations in children were conducted in association with the SCIC in 2002, compared to 53 in 2001 and 42 in 2000 (Sydney Cochlear Implant Centre, 2002). Of these, 36 were in children 5 years of age or younger, with most children being 2 years old. Additional implantations are conducted in association with the Shepherd Centre (estimated at 5 to 10 cases in 2002). The 40 or so procedures performed in 2002 in younger children are equivalent to about 10% of the possible 425 severely and profoundly deaf children born in the past five years in New South Wales if the rate of hearing impairment is reckoned at 2.5 per 1,000. These figures would extrapolate to approximately 160 procedures nationwide. At these levels of implantation, approximately 45% of severely and profoundly deaf children are being implanted at a incidence rate of 2.05 per 1,000, and well over 100% at 1.07 and 0.7 per 1,000. In 2002 alone, there were possibly five implantations in children less than 1 year old (four by the SCIC and at least one by the other provider). This is anywhere from 25% to 84% of the profoundly deaf children likely to have been born in that year in New South Wales, depending on which incidence rate one believes is applicable. Whatever the exact figure, there can be little doubt that very many newly identified severely and profoundly deaf children who are suitable for an implant are in fact being implanted, and at a very early age. Obviously, not all severely and profoundly deaf children are implanted. Some are simply not suitable, and others are implanted despite having more moderate levels of hearing impairment. A significant proportion of the otherwise potential candidates are not implanted because additional disabilities make them unsuitable. This fact simply compounds the reduction of numbers of potential new signers. Given current habilitation practices with young children with cochlear im- plants, it is unlikely that many of the implanted children will be exposed to Auslan or any form of sign language in their early years or later in childhood, though practices have been changing. (There has been an increase in the use of sign language with some children with cochlear implants.) Overall, however, the “negative” impact of the cochlear implant program on the future growth of the signing Deaf community must be deemed to be significant, irreversible, and well under way. Genetic Screening and Gene Therapy Biotechnology, in particular the science of genetics, appears about to change the character and size of the deaf population even more. The change may well be dramatic if not definitive. In recent years, there have been many advances in the identification of genes related to deafness. Estimates vary as the to number of genes associated with deafness, but they range from 100 to more than 400 (Gregory, 2003; Pandya & Arnos, 2003). Most important, of the 0.9 per 1,000 incidence rate for severe and profound deafness now commonly cited for the United States (Nance, 2003), it is estimated that 50% of the cases are genetic, and of these, 50% are nonsyndromic (i.e., manifest themselves only as deafness) and 50% syndromic (i.e., have other expressions besides deafness; Pandya & Arnos, 2003). Though the identification and study of all of these genes has only begun, the recent completion of the Human Genome Project means that the process is about to experience significant acceleration. One milestone in this area has been the identification of the Connexin-26 gene, which is associated with deafness. Indeed, it is esti- 368 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF mated to be responsible for, alternately, 30% to 40% (Nance, 2003), or even 80% (Pandya & Arnos, 2003), of all heritable deafness in some populations. (Asian, European, and Jewish populations each seem to have their own distinctive subtype of the Connexin-26 gene.) The implications of the identification of specific genes are manifold. It permits the development of procedures to determine if individuals (whether deaf or hearing) are carriers of a particular gene, and thus the likelihood that any offspring will be deaf. The procedure can also be used to screen a fertilized egg (as part of an in vitro fertilization, or IVF, procedure) prior to implantation, or to screen an embryo already developing in the womb. Such tests have been developed for Connexin-26 and are available. Genetic screening based on identification of the Connexin-26 gene has been available for some time, and has been used in conjunction with genetic counseling to help would-be parents make reproductive decisions before and during early pregnancy. In late 2002 in Melbourne, the first known use of screening for Connexin-26 in vitro was conducted. The couple used IVF specifically for this purpose, so that only a fertilized egg not carrying the Connexin26 gene would be selected and implanted. The further, medium-term aim of medical research in this area is to achieve effective and safe gene therapy whereby the affected fertilized egg, embryo, or newborn may have the genetic condition corrected. Even failing the development of a gene therapy (which according to some genetic scientists may prove to be a much more difficult task than many researchers assume), genetic screening for several identifiable heritable causes of deafness is now available. There are many moral, social, and political questions surrounding the ap- plication of such technology, but there is a strong possibility that many “atrisk” couples will avail themselves of screening opportunities. After all, both hearing and deaf parents-to-be already routinely undergo genetic screening for a number of other conditions (e.g., cystic fibrosis, spina bifida, or Down syndrome). Even though, for many deaf people, and indeed for many hearing people, screening may not seem desirable nor necessarily lead to termination of a pregnancy, early indications and preliminary attitudinal research indicates that for a sizeable minority (at least 40% of hearing parents), it would be (Middleton, 2003). As more genes are more accurately identified and the screening tests themselves become simpler, cheaper, and more exhaustive (e.g., routinely screening for a whole range of genetic dispositions in a single test), incidence rates, and hence prevalence rates, for severe and profound deafness are unlikely to go unaffected. The Future of Auslan The Size of the Signing Deaf Community: Future Projections In 1999, there were approximately 250,000 live births in Australia. Regardless of whether one assumes a relatively high or a relatively low incidence of hearing impairment and of the various degrees of severity, the numbers of additional newly identified profoundly and severely hearing impaired children is not expected to be large. In terms of the future strength and size of the signing Deaf community, the best possible scenario is one in which the highest incidence rate for all hearing impairments is 2.5 per 1,000 (0.8 for severe and profound deafness), and in which all severely and profoundly deaf children grow up to be Auslan users (see [a] + [b] in Table 7). At 251 births per year, the signing Deaf community is likely to begin contracting in the near future, as births would not compensate for the rising death rate in an aging and already small community. The signing Deaf community has an inverted age pyramid and a significant bulge of 35-to-45-year-olds due to the rubella epidemic of the late 1960s. An even less favourable scenario for the viability of the signing Deaf community is the possible addition of only profoundly deaf children to that community at the lower rate of 1.07 per 1,000 (see [c] in Table 7). The numbers are extremely small, and presage Table 7 Likely Yearly New Casesa of Childhood Hearing Impairment in Australia, at 250,000 Live Birthsb Type of hearing impairment Mild (25-40 dB) Moderate (41-70) Severe (71-90 dB) Profound (>95 dB) Total Rate per 1,000c 2.5 2.05 1.07 0.7 187 (62) 187 (62) (a) 187 (62) (b) 64 (23) 154 (52) 154 (52) 154 (52) 51 (18) 80 (27) 80 (27) 80 (27) 28 (9) 52 (18) 52 (18) 52 (18) (c)19 (6) 625 (212) 513 (174) 268 (90) 175 (60) a All figures are rounded to whole numbers; totals are adjusted accordingly. b Based on Australian Bureau of Statistics (ABS) 1999 figures: 248,870 live births, crude birthrate 13.1. c New South Wales figures in parentheses calculated at 85,000 live births. Based on ABS figures for New South Wales (2001): 84,578 live births, crude birthrate 12.8. 369 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? the imminent contraction of the community, as illustrated in Figure 2. However, these scenarios do not take into account two factors, either of which could effectively bring an end to the community within half a lifetime: a 75%, or even saturation level, rate of cochlear implantation, and the systematic implementation of genetic knowledge to avoid reproductive outcomes with known causes of hearing impairment. Alone, the current high rate of cochlear implantation may have already effectively ended the growth of the Deaf community in any meaningful sense. From Figure 2, it would appear that this decline may have begun in the late 1990s. Decline due to implantations seems inevitable even if more and more implanted children receive education that uses both oral/ aural and signing approaches. On top of this, the potential “elimination” of genetic causes of deafness, not to mention the control of premature births, would almost guarantee the worst possible scenario—a greater and more precipitous contraction in the signing community. In other words, future developments in genetic science may only make the change that is already under way permanent, irreversible, and total. Anecdotal evidence from Australia’s biggest cities suggest that this contraction may already be taking place. Both in Sydney and Melbourne, many, if not most, very young deaf children now have implants. Few are in sign language–based or sign bilingual programs, and it is becoming increasingly difficult to find children to fill such programs and maintain a minimal linguistic community, a “critical language mass” (see the following section, “Implications for Auslan”). It is even becoming difficult to fill such programs with deaf children from deaf families, because the number of deaf children of deaf parents itself appears to be much smaller than the 5% to 10% of deaf children commonly cited in the literature. From the enrollment records of the Royal Institute for Deaf and Blind Children (in which it was recorded if a child had any known family history of deafness), it appears that only approximately 3% of children have any deaf relations in earlier generations (parents, uncles and aunts, grandparents), though approximately 11% of children are recorded as having a deaf sibling. (In recent attempts by one of my doctoral research students, Louise de Beuzeville, and myself to locate deaf children of Figure 2 Numbers of Deaf Signers in Australia, With Two 20-Year Projections 370 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF deaf parents under the age of 9 years across Australia, for participation in a research project on sign language acquisition, we have been unable to locate more than 50 potential subjects.) Like the population of Australia as a whole, the signing deaf population is aging. However, along with decreased birthrates in the entire population, there is an additional and real reduction in both the incidence of severe and profound deafness and the natural process of enculturation of some of these children into the signing Deaf community as young adults (due to improved hearing aids, cochlear implants, and mainstreaming). As an aging population fails to be renewed by younger members at a sustainable rate, the inversion of the age pyramid is accentuated. This means that despite greater overall life expectancy in the community, the point is reached where the death rate of the subpopulation begins to accelerate, and far outstrip that of the wider community. At that point, one experiences population collapse. The Australian signing deaf population is experiencing the first of two inevitable and significant drops in population size. The two periods of decline are linked to the two rubella epidemic age cohorts (see Figure 3). One cohort belongs to the epidemic of 1944-1948 and the second to the epidemic of 1965–1970. The first cohort is now almost 60 years old and has a high death rate. It sits at the younger end of an age cohort that belongs to the first half of the 20th century, when the overall incidence of deafness was higher, schooling centralized and residential, and the use of Auslan an almost inevitable linguistic and social outcome of education. In the past 20 years, the vast majority of the early-20th-century group has already passed away. The second rubella epidemic cohort is now in its mid-tolate thirties. The reduction in the size of this second group will not become acute for about another 4 decades, but they will be living in an ever-shrinking and ever-aging community, with very Figure 3 Age-Related Growth and Contraction of the Australian Signing Deaf Community 371 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? few younger members. The 20-year projections in Figure 2 do not take account of this demographic fact because no provision has been made for an increasing death rate in a community that is aging much more rapidly than the wider community. The projected decline to 2020 may therefore be conservative. Implications for Auslan There is little doubt that many thousands of hearing impaired individuals—with various degrees of hearing loss—use hearing aids, have had an orally focused education and upbringing, and are not regular or competent users of a community signed language. Nonetheless, they may avail themselves of elements of gesture and sign language, especially when communicating with other similarly hearing impaired individuals with whom they have established social and personal contacts during and after their school years. Many would be known to Auslan-using members of the signing Deaf community. However, they cannot be described as users of Auslan themselves. This group of people may, in fact, account for some of the overreporting, if overreporting it is, in the estimate of 15,400 by Hyde and Power (1991). Many Auslan users may know many other non-Auslan-using oral Deaf who “know some signs.” When research for the first Auslan dictionary was conducted, in the 1980s (Johnston, 1989a, 1989b), it was during a period of demonstrable stress and rapid change in the Australian Deaf community, caused by the first wave of the major demographic and educational changes I have discussed in the present study. This was precisely the reason why the research was conducted. There was a serious need to document, preserve, and possibly revive the language usage of that com- munity—generational and peer transmission of Auslan through the large central schools for the deaf had been badly disrupted because of mainstreaming (vigorous since the late 1950s) and the introduction in the early 1970s of an alternative contrived signed system (called “Australasian Signed English”) for use in special schools and units where a signed approach was tolerated (Jeanes & Reynolds, 1982). Naturally, changing education systems and artificial signed systems cannot alone completely undermine a linguistic community based on real and unchangeable communication needs. In the end, they did not, and the language is still viable. There is reason to believe that the identification (“naming”) of Auslan and the recognition of the language achieved through the publication of the dictionary of Auslan have significantly contributed to its integrity and continued survival. Despite this achievement, the continued and growing stress exerted on the Australian Deaf community by declining incidence and prevalence rates, ever-increasing mainstreaming, and virtual saturation levels of cochlear implantation simply cannot be ignored. Attitudinal change involving recognition of, respect for, and promotion of Deaf community sign languages cannot reverse the impact of such trends, nor can they—and this is the essential point—guarantee a “critical language mass.” By this is meant the minimal viable size for a linguistic community in both numbers of users and functional range of use. Though languages may survive with extremely small numbers of users, without ongoing use in a variety of functional domains, including the socialization and enculturation of new speakers or signers (especially in the absence of a written form and accessible literature), a language may cease to be a “living language” long before the last speakers or signers disappear. Additional stress must be experienced by a community of sign language users who are, by their very nature, dispersed through and embedded within a much larger community consisting of users of a majority spoken language. There is no known way that the continued aging and shrinking of a linguistic community without replacement by younger native users can support a viable language beyond the life spans of the current majority cohort, despite all the goodwill in the world. Indeed, one would expect examples of language attrition or language convergence to appear as precursors to possible language death. Younger sign language users may be growing up in a linguistic environment that is very different from that of older signers, and which is itself rapidly changing. Linguists must take account of these developments when collecting and evaluating language data. Implications for Sign Language and Auslan Research For research on sign language, and on Auslan in particular, the implications of a radically different linguistic environment are also great, and revolve around the question of research priorities and the hope that “missed opportunities” in studying Auslan as an example of an established sign language could in any real sense be compensated for by future research outcomes with other sign languages. With respect to Auslan research, the situation is not unlike that of the early 1980s. Indeed, it is worse. Recognition of the language has brought many benefits (e.g., improved teaching in the language, sign language interpreting services, sign bilingual programs), but 372 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF the initial lexical documentation and analysis of the language has not been augmented by comparable syntactic, psycholinguistic, or discourse studies. As I argue in the present article, it has become apparent that not only is the Auslan community considerably smaller than has been assumed, but that it is biased toward older members and is shrinking rapidly at both ends of the age spectrum. Moreover, very few members of the younger cohorts actually use the same type of Auslan as the older community members. This is well known to anyone who is a competent signer and at all familiar with and knowledgeable about the Australian Deaf community (the former implies the latter). However, it is not well documented. There has been no systematic, widespread, and exhaustive collection of a representative sample of Auslan as used by peer-recognized “true users of deaf sign language.” Claims of this type of generational change, let alone claims as to grammatical patterns and discourse structures of the language, or the impact of modality on the processing of language in the brain, cannot be empirically tested without a credible corpus of Auslan. Quiet, definitive action is essential if an Auslan corpus is to be established as the basis for a valid and verifiable description of this language. Modern linguistic science is, quite rightly, increasingly suspicious, if not intolerant of, grammatical and lexical studies based on native signer intuitions alone, or unsupported by a corpus of the language. With respect to sign language research generally, though Australia is a relatively young country with a small population, history and geography have conspired to give it one of the few native sign languages in the world that has an attested historical depth of considerable length, compared to other sign languages. It is more than 200 years old and has been handed down within some families for more than five generations. (I have 15 living deaf relatives, including parents, uncles, aunts, and cousins. Indeed, there have been 21 deaf people in my extended family tree over five generations, including grandparents and their siblings.) Australia’s majority spoken language and its Deaf community sign language predate the settlement of the continent by Europeans. Australian English is a variant of English. Auslan is a variant of British Sign Language (Johnston, 2000). Not only can the roots of Auslan be traced to early19th-century forms of signed language used in Britain, the first schools for the deaf in Australia were established relatively early (in the 1860s) compared to those in most other countries. Many countries have never made educational provision for deaf children; others have experienced a situation in which indigenous religious schools, or schools established in colonial periods by the metropolitan power, have long ago been closed because of poverty or political upheaval. When one looks at the core of the signing Deaf community in Australia, one is not looking at a language that has emerged or reemerged in a single generation, but one with had a continuity of more than 2 centuries. One must ask how likely it is that any of the newly identified and emerging sign languages of the developing world will endure for generations and continue to be handed down within families 2 centuries hence. If the arguments I make in the present article are correct, the coming decades may be the only opportunity that will ever present itself for linguists to properly document and thoroughly understand the structure of the few native sign languages of Deaf communities with this type of age profile. Auslan is one of these languages. Other Implications Demographic and linguistic changes have enormous implications for the delivery of a variety of language and educational services for deaf and hearing impaired children and adults, which I can only touch on in the present article. For example, educational sign language interpretation is likely to suffer a contraction in the near future. Ironically, however, there may be a modest interim period of expansion due to the closure of sign bilingual schools or sign language–using units in a response to reduced intakes. Instead of dedicated schools, units, or classrooms, individual children may be assigned or entitled to an educational sign language interpreter or service, rather than a signing teacher of the deaf. Indeed, this appears to be emerging as the model of “bilingual” education for deaf children in the state of Western Australia. However, as the cohort of the current generation of school-age signing children and young adults moves through the system, demand for this type of service will itself decline, before perhaps disappearing. The implications for training programs for teachers of the deaf (in which teachers are trained to work in sign language–using environments) are almost immediate. The implications for interpreter training programs in the slightly longer term are self-evident. Slowly but inevitably, the demand for sign language interpreters as a whole will decrease with the shrinking and aging Deaf community, but this will take several decades and is not of immediate concern. For teacher training, sign bilingual and sign language–using schools, and government and nongovernment organizations 373 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF W(H)ITHER THE DEAF COMMUNITY? that serve the needs of deaf and hearing impaired children (with or without other disabilities) and their families, the effects will be felt very soon indeed, if not almost immediately. One might argue that the effects have begun to be felt already. It is important to remember that the apparent declines in incidence and prevalence reported in the present article need not have any negative impact on service delivery by way of damaging quality or threatening entitlement (e.g., through a feared reduction in effective political lobbying). Though the ability of all sorts of minorities to argue for due consideration can be weakened if their numbers are extremely small, in some circumstances a special-interest group may experience a greater consideration for this very reason. Governments may actually be more willing to adequately and properly respond to the legitimate language needs of deaf and hearing impaired citizens if numbers are modest, so deaf people need not feel threatened. Thus, not only is it not necessary to appeal to large numbers to establish language rights, should the newer lower estimate of the size of the Australian signing Deaf community presented in the present article prove accurate, it would be unethical to continue to do so (cf. Schein, 2001). In any event, of course, nothing is to be gained for linguists by confusing the hundreds of thousands of hearing impaired people in Australia with the signing deaf population. The former cannot yield any valid data on the natural sign language of the Deaf community. Conclusion It is a well-known fact that during the past 20 years, the profile of the population of children who are hearing impaired or deaf has been rapidly chang- ing. I have argued in the present article that the size of the signing Deaf community in Australia is considerably smaller than some previous estimates of the size of the Deaf community. I have also argued that the signing Deaf community is about to experience more dramatic changes and an eventual decline. Of course, this is the scenario in a rich developed Western country that has a relatively small, highly concentrated, urbanized population, a history of early implementation of mainstreamed education, free universal access to hearing aids for children under age 18 years, and a federally funded universal health care scheme that subsidizes most of the cost of an initial cochlear implant. It is also a country in which much of the development and improvement (and by some accounts, discovery) of the cochlear implant has taken place. It has been taken up with great enthusiasm. Australia may thus not be comparable to other developed countries from this point of view. It even appears to have had a historically low incidence of hearing impairment throughout the 20th century, not just in recent decades. As for the underdeveloped and developing world, conditions there are certainly not comparable to those in Australia and other parts of the developed world; nor will they be comparable within the foreseeable future. The likely decline in the size and structure of the signing Deaf community in Australia (and potentially in many other developed countries) in the near future does not yet presage an “end to deafness” in any real sense. Not only could new and totally unexpected causes for deafness appear tomorrow, there are millions of severely and profoundly deaf children and adults in the underdeveloped and developing world. Many are part of new and growing deaf communities in which new sign languages are being created, and existing ones rapidly developing and changing. The developed world has a great moral imperative to ensure that the linguistic and material circumstances of deaf and hearing impaired people in the developing world are addressed and ameliorated. This process should proceed in tandem with fulfilment of another urgent intellectual and cultural responsibility of the developed world—the production of exhaustive and accurate corpus-based linguistic research into existing well-established sign languages. A Coda Throughout the present article, I have tried to objectively describe the current and future size and constitution of the Australian signing Deaf community because of the crucial impact this will have on the possibility and integrity of linguistic research. Shooting the messenger or denying the realities of the situation cannot reverse the trends. Given my personal connections and family history, and given the potential loss of language and culture that appears to be all but inevitable, it goes without saying that this scenario gives me no joy. Indeed, I experience deep sorrow at the impending loss. There is little doubt that many individuals in the signing Deaf community would have stronger emotions regarding these developments. However, sorrow at the potential cultural loss need not be compounded by inability or refusal to act appropriately. Refusing to take seriously the task of recording a corpus of Auslan for ongoing and future research would display a profound indifference toward our cultural heritage, and a lack of appreciation of the most basic principles of scientific research. 374 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF Notes 1. The publisher of the report, the Deaf Society of New South Wales, has acknowledged a 10-fold error in the actual numbers printed in the report, 12,612 and 25,225 respectively (Rebecca Ladd, executive director, Deaf Society of New South Wales, personal communication, June 2003). When these figures were first published, the authors appeared to accept them, although they suggested that they represented significant underestimates (Deaf Society of New South Wales, 1998). 2. This counterbalancing trend should not be used in any moral reckoning of the justifiability of educational practices that effectively deny deaf children a linguistic safety net (by denying them simultaneous early access to a signed language). There existed an expectation or hope that the non–sign language-using approach alone would succeed. It was “supported” by the unsubstantiated belief that the use of a signed language would actively hinder the simultaneous acquisition of oral/ aural skills. 3. The death rate is approximated at 0.5 per 1,000 (the “underlying incidence from enrollments”) of the overall death rate for each year, on the basis of the population of that year. References Australian Association of the Deaf. (2003, March). [Editorial]. AAD Outlook, p. 44. (Available from the Australian Association of the Deaf, 149 Castlereagh St., Ste. 513, Sydney NSW 2000 Australia.) Bailey, H. D., Bower, C., Gifkins, K., & Coates, H. L. (2002). 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Journal of Perinatology, 20(8, pt. 2), S132–137. 375 VOLUME 148, NO. 5, 2004 AMERICAN ANNALS OF THE DEAF
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