Scottish Government

1.0 INTRODUCTION

1.1 WHO ARE DEAF PEOPLE?

Deaf people are all around us as neighbours, colleagues, as members of our family and we ourselves may be deaf or become deaf in later life. They have the same diverse range of characteristics as us all in gender, age, ethnicity, sexual orientation and religion. Whilst deaf people are present in all parts of the community they are often excluded from many day-to-day activities and from the advantages enjoyed by others because of barriers which impede their access to activities which we take for granted.

Deafness is a general term* which conceals very real differences between the groups of deaf people. A brief description of each of the major groups is given here but more detail about the access needs of each group is covered throughout this report.

The major groups include people who:

i) become hard of hearing in later life

The largest group of deaf people are those who lose their hearing as they age, often gradually, so that they may not seek help and advice for many years. Becoming deaf in later life is usually characterised by a loss of high frequency sounds which makes it difficult to hear the beginning and end of words. Hearing aids and lipreading are helpful, especially if introduced earlier rather than later.

* A word about the terminology used in this document. The term deaf is used when referring to all of the different groups of deaf people (Deaf, deafened, deafblind and hard of hearing people). The capitalised Deaf is used to describe those people whose first or preferred language is British Sign Language. In adopting the social model of disability the document rarely uses hearing impairment or similar terms except where this will aid clarity or the terms are used by others, such as in legislation.

ii) acquire profound deafness as adults

This group may become severely deaf suddenly in adult life, such as after a head injury, or their hearing may deteriorate over time to a point where a hearing aid is not useful. Timely intervention with this group and with their families is critical in supporting a positive adjustment to their new situation. These adults rely heavily on lipreading and the written word for communication, for example, using a notetaker at meetings.

iii) are born profoundly deaf or become deaf in the early years of life but do not use British Sign Language ( BSL)

The impact of deafness on this group affects their family life, communication, education and life opportunities which all have a significant influence on them throughout their lives. Hearing aids are not generally helpful for speech, although younger people are increasingly having cochlear implants. They mostly rely on lipreading, visual clues and written communication.

iv) use British Sign Language as their first language

This group are those who are profoundly deaf from birth or early life and who have BSL as their first language. They are an indigenous language minority group, with a shared identity and they belong to the Deaf community. This group is confident in BSL, some may have English as a second language but many are not confident with written English.

v) are deafblind

This category comprises a number of different sub groups, from those who are born deafblind to those who lose both senses in old age (see page 33, for more detail about deafblind people). The age of onset and the severity of the deafblindness greatly influences the communication used by the individual. Some people hear with a powerful hearing aid at close quarters, others will need signs within a restricted visual field (e.g. within a smaller visual frame than usual) and others use deafblind manual alphabet, where the letters of the alphabet are tapped onto their hand.

There are other groups that could legitimately have been included in the roadmap, but in the interest of focussing on the central issues have not been. Some of the groups have highly specialised needs and it was felt the roadmap could not do justice to them by taking a broad brush approach to linguistic access. Deafblind children are not included for this reason, for information about this group see www.sense.org.uk. For similar reasons, people with wider communication support needs, such as after a stroke, are also not included. Communication Forum Scotland have produced a Toolkit for engaging with people with communication support needs, aimed at service providers and decision makers and it is available on the CFS website www.communicationforumscotland.org.uk, click on Talk for link.

1.2 THE NUMBER OF DEAF PEOPLE

Precise numbers of deaf people in the different groups described in this roadmap are not known. In a review of the community care and mental health needs of adults with a sensory impairment the difficulty of finding accurate statistics was described:

"One of the clearest messages to emerge from the literature review was the current absence of routinely collected, reliable data relating to the numbers of Deaf, deafened, blind, partially sighted or dual sensory impaired adults in Scotland. This appears to be particularly acute for those with hearing impairments or deafblindness."

(Skellington et al. 2006)

This is a good illustration of the type of issues e.g. gaps in statistical knowledge, which are highlighted in this report. Without accurate data service planning is made more difficult. The statistics provided here on the population prevalence of deafness are most helpful in capturing higher incidence groups, such as older people, but less useful for estimating smaller groups such as Deaf people whose language is BSL.

You could put it this way:

• Almost one in five of Scotland's adult population suffers from a measurable deficit in hearing which is likely to lead to difficulties in understanding speech, particularly in noisy backgrounds.
  ^{Draft Quality Standards for Adult Hearing Rehabilitation Services Scottish Government 2007}
• 1 in 7 of the adult population has some kind of hearing loss
  ^{RNID fact sheet 2008}
• 730,000 adults in Scotland have hearing loss, of whom 533, 000 would benefit from NHS hearing services…
  ^{NHS Audiology Review in Scotland Public Health Institute of Scotland 2003}
• 8,600 per 100,000 population. The international prevalence estimates for hearing impairment/deafness
  ^{Communication Support Needs: a Review of the Literature Law J, et al Scottish Executive Social Research 2007}

However you put it, it is clear that:

The population prevalence of hearing impairment increases exponentially with advancing age. Changes in population demographics will, therefore, have important implications for the future as the number of older people in Scotland increase. (Draft Quality Standards 2007)

and

Research is clear that the prevalence of hearing impairment in Scotland is expected to rise, the actual rate being age-related. Current figures show that eighty percent of hearing impaired people are now aged over 60 years and, given no change in prevalence rates over the next 20 years, the demographic structure of the UK will increase the number of hearing impaired people by about 20%. (Skellington 2006)

Hearing loss

It is estimated that 730,000 adults in Scotland have hearing loss with 80% being over 60 years of age.

Acquired Profound Hearing Loss ( APHL)

APHL is a severe disability and LINK (now Hearing Concern/ LINK) state; It is estimated that there are between 15,000 and 30,000 adults currently living with APHL in Scotland, many of these resulting from accident or illness. APHL has wide-reaching and often devastating impact on the lives of individuals who become deafened and also their close family members, friends and colleagues. Without help, it can take years to develop successful coping strategies or social support. The majority of deafened people do not use sign language and do not develop a Deaf identity. Their needs are different from people who are born Deaf and also from those who can still use hearing to a significant extent.

British Sign Language Users

The number of Deaf people using BSL in Scotland is the most difficult figure to capture but is usually estimated at between 4,000 and 6,000.

1.3 BRITISH SIGN LANGUAGE

What is British Sign Language?

British Sign Language ( BSL) is one of the hundreds of sign languages used world wide. Sign language is not universal and each sign language is indigenous to its geographical location and as with spoken languages, there are regional variations. The variations can at times cause comprehension difficulties but these tend to be more significant for learners of BSL than for Deaf people themselves. BSL is a visual-gestural language with its own vocabulary, grammar and syntax. It is the first language of a community of Deaf people and is used by their families and others who wish or need to communicate with them. Major research by linguists on sign languages, which established them as languages, emerged during the 1950s. The seminal work in the UK was undertaken at Moray House in Edinburgh by Dr Mary Brennan during the 1970s.

One important difference between minority language speakers and sign language users is that Deaf people who use BSL are less likely to be bilingual and this has huge implications for policies and for services. It is not simply that Deaf people prefer BSL to English, as many Scots Gaelic, Welsh or Irish speakers may prefer their own languages to English: it is that Deaf people are not in a position to acquire English in the usual way. Hence the singular power of Deaf people's adherence to their language. (Brien1992)

Deaf not Disabled

Deaf BSL users consider themselves a distinct language group and not disabled. They have a unique culture, history and life experience as a language minority and feel that actions to improve their inclusion in society should be based on exactly the same language approach to other groups, such as speakers of Gaelic or of Welsh. In some instances Deaf people and their organisations are included in policy forums alongside other language groups, for example as members of the Scottish Government's Translation, Interpreting and Communication Group, where the group includes BSL when considering spoken languages. This is the type of arena in which Deaf people wish to be involved and in this instance they are, but more often they are excluded. It should be noted that the majority of deafened, hard of hearing and some deafblind people who are not part of a language minority accept the term disabled. Notwithstanding these important perspectives all minority groups have experiences in common which present them with barriers to full participation in society. Disability legislation encompasses all disabled and deaf people and offers them ways to redress some of the disadvantage they experience.

With all of the caveats already mentioned the best estimates of deaf people in Scotland are:

1.4 AN INTRODUCTION TO LINGUISTIC ACCESS

We all need access to services nearly every day of our lives, whether this is access to education to help us realise our potential or to health care or to any of the other services we constantly use. The way we access these services is influenced by how well they are able to meet our communication needs and for the majority of people in the community this is through spoken or written English. Deaf people often find that their communication needs are not catered for. If they are hard of hearing or deafened or deafblind people they will need adaptations to communication such as clear speech, loop systems or information will need to be written down. If they are BSL users or deafblind people they will need communication in a different language ( BSL) or mode (deafblind manual) and many will not find written English effective.

Illustration of Need

Many reports and research refer to the barriers deaf people face in trying to gain access to services and two are mentioned here:

i) Creating Linguistic Access for Scotland ( SASLI 2002)

The report succinctly captured the situation at the time:

"Currently deaf people do not have full linguistic access to any single area of life outside of their own community. Their opportunity to be included in such key areas as education, employment, social work services, the justice system, health and medical services is greatly diminished by the lack of linguistic access and the ignorance and discrimination inherent in these systems. While it is unlikely that personnel in any of these areas actively wish to discriminate against deaf people, their lack of knowledge of the linguistic requirements of deaf people may make such discrimination inevitable."

This description is very similar to descriptions of institutional discrimination from elsewhere and which are now acknowledged as real, requiring robust action by organisations to counteract them. Whilst in the years since the report was written some real progress has been made, there will be many deaf people who will have not noticed and would say, so what has changed? The report recommended a strategy for improvement based on the premise that to improve access to all areas of daily, public and social life for deaf people in Scotland we must increase the numbers of appropriately trained personnel.

http://www.sasli.org.uk/documents/trainingstrategy2.pdf

http://www.ssc.education.ed.ac.uk/resources/deaf/sasli/intro.html

ii) An Investigation of Access to Public Services in Scotland using British Sign Language (Kyle 2005)

This later research confirmed how little had changed since the earlier report in 2002. The study reinforced two central messages about access to services in BSL:

a) " Deaf people see BSL as their natural language - it is not a service nor a decision in regard to providing service. Deaf people see BSL as a right in the same way English is seen as the way to access services and they wish to have direct access to services via bi-lingual staff."

b) " BSL users were almost never able to access public services directly using BSL. In the absence of staff able to use BSL directly access was limited by the shortage of BSL/English interpreters."

http://www.scotland.gov.uk/socialresearch