Disability is difficult to define, depending on the different and conflicting constructions regarding its ‘nature’ and ‘meaning’. Society is increasingly self-regulating; with more closely focused definitions of what is ‘normal’ and what is not, and disability is still a stigmatised condition (Hughes 1998). Feminists argue that women generally are oppressed by the society we live in today. So to be a disabled woman in that society is doubly oppressing. There is a prevailing view that women are the carers, the nurturers and the stalwart of family life. However, if you are a disabled woman then how could you possibly cope with being a mother, would you be a suitable person to bring up a child and could you possibly do this without the intervention of the state? The aim of this chapter is to try and ‘unpick’ some of these stereotypical responses to disabled women as mothers and put forward a more positive view.
The Collins English Dictionary—21st century Edition (Trevvy 2000) defines disability as:
1. The condition of being unable to perform a task or function because of a physical or mental impairment;
2. Something that disables; handicap;
3. Lack of necessary intellect, strength, etc;
4. An incapacity in the eyes of the law to enter into certain transactions (p 444).
This definition seems focused on issues of inability and lack of something in the individual, with a legal implication that also focuses on the negative.
Hughes (1998) refers to The Concise Oxford Dictionary of Sociology which widens this definition by including how this fits in with society: ‘Loss or lack of functions, either physical or mental, such as blindness, paralysis or mental subnormality—which unlike illness is usually permanent. Disabilities are usually stigmatising. Moreover, disabled persons often need extra finances and personal support [which is often inadequate to sustain their rights] and are a key group in social security and welfare programmes’. This definition also focuses on the problem of loss or lack, but adds to that an emphasis on the person requiring extra resources and the ‘dependent’ nature of many disabled people.
A third definition from the British Disability Discrimination Act 1995 defines physical and mental impairments and reflects on the fact that the disabled person may be unable to cope with ‘normal’ life: ‘A person has a disability if he or she has a physical or mental impairment which has a substantial and long-term adverse effect on his or her ability to carry out normal day to day activities’. This definition takes things further than the previous two in that it places an emphasis on the person with the disability being unable to carry out normal activities, thus suggesting that normality is natural and taken for granted. Examples are given in the Act of activities which may not be able to be achieved by people so defined, thus taking them outside the norm. Examples of these activities are:
▪ Inability to see moving traffic clearly enough to cross a road safely.
▪ Inability to turn taps or knobs.
The state is therefore required to put interventions in place to assist these individuals to achieve a ‘normal’ life-style.
Lennard Davis (1997) states that the concept of a norm implies that the majority of the population must or should be part of the norm. The norm pins down that majority of the population that falls under the arch of the typical bell-shaped curve. This is the normal distribution curve and there will always be people at the extremities of the curve that will have different characteristics from the majority. These are considered deviations from the norm and therefore they are open to scrutiny and discrimination by the majority. People with disabilities may be thought of as deviants and effort will be put in by those in power to make them conform to what is considered to be the norm in health, mobility, and the environment.
Swain & Cameron (1999) quote the Union of the Physically Impaired Against Segregation (UPIAS) who define impairment as: ‘Lacking all or part of a limb, or having a defective limb, organ or mechanism of the body’ (p 69). According to Neville-Jan (2004) people with a disability would prefer to be thought of as physically impaired, rather than disabled as many do not feel disabled in themselves, only by the society they live in. UPIAS also offer an alternative definition of disability: ‘The disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participating in the mainstream of social activities. Physical disability is therefore a form of social oppression’ (p 69). This definition supports Neville-Jan’s (2004) beliefs.
Language is a powerful tool and the words that we use to describe people with disabilities can stigmatise and insult them. Some of the definitions stress that the person is ‘unable’ or ‘impaired’ whilst others point to institutions which ‘dis-able’ people. There has been much discussion about the correct language to utilise. The innate meaning of some words has been challenged, whilst others are no longer readily acceptable or felt to be ‘politically correct’ for example: to label someone as ‘spastic’ is seen as derogatory and offensive. Negative attributes are often associated with different terms depending on the sociological philosophy at the time. The way society is organised determines the meaning of disability (Vernon & Swain 2002). Corker & French (1999) refer to Susan Peters, who went even further by maintaining that labels and language prevent the development of a positive identity by damaging self-image, giving what she called a false consciousness.
All the definitions appear to ignore the idea that non-disability/disability may be seen as a continuum rather than as discrete states. Many people have a disability which occurred as a result of an accident and as such they will have perceived themselves as ‘normal’ in the first instance and may not perceive themselves as ‘abnormal’ following their change in status. Jenny Morris (1993) describes the events following her spinal injury, acquired whilst attempting to rescue a child from a railway embankment. She was generally viewed negatively as it was thought she had attempted suicide and due to her acquired disability was now considered to be an unsuitable person to look after her 1-year-old daughter.
Definitions have changed over time and beliefs about disability have also changed. There are passages in the Old Testament that determine people with ‘blemishes’ or physical defects, for example, blind or lame, as impure or tainted. Hughes (1998) discussed earlier work by Carol Thomas, who had argued that in most pre—modern societies, disability has been religiously explained as divine punishment. Women in the Old Testament were also seen as impure and this therefore increases the stigma attached to being a disabled woman. In the New Testament there are examples of healing the disabled and a moral call to do ‘good works’ and show pity to those ‘less fortunate than ourselves’. Disability has been seen as a ‘curse’ or a ‘Cross to bear’ in the Christian faith and it has been surrounded by ignorance, fear and superstition (Hughes 1998).
Historically there was a movement that believed that disability was a form of pollution, the evidence of sin. There was a belief that people with a disability or the ‘feeble-minded’ should not reproduce for fear of contaminating society (Hubbard 1997). The eugenics movement did not start with the Nazis; they only took it to extremes (Hubbard 1997). The idea of having a ‘perfect’ race developed in Britain in the late 19th and early 20th century. Francis Galton, cousin of Charles Darwin, coined the term ‘eugenics’ which means ‘well born’ in Greek, but was taken as a term to improve the stock of the nation. Galton helped found the English Eugenics Education Society and eventually became the Honorary President. Marie Stopes, best known for her work as the pioneering advocate of birth control was a firm believer in eugenics. She wrote a book called ‘The control of parenthood’ in 1920 and even tried to prevent her son’s marriage to a woman who wore glasses on the basis that it would be a crime against his country (Campion 1995). As late as 1941, Julian Huxley, brother of Aldous Huxley, wrote an article arguing that it was crucial for society that ‘mental defectives’ should not have children and that there should be prohibition of marriage or segregation in institutions, combined with sterilisation for those still ‘at large’ (Hubbard 1997).
The American eugenics movement built on Galton’s work between 1905 and 1935. There was a belief that the families where ‘gifted’ children were born, were few and far between and that poor, illiterate families were ‘breeding’ excessively. Charles Davenport was a leading exponent of eugenics and in 1904 he became the director of the ‘station for the experimental study of evolution’ (Hubbard 1997, p 190). His aim was to collect large amounts of data on human inheritance and store them in a central office. He managed to persuade many rich and influential people to sponsor the movement and the office and its staff became major resources for promoting two legislative programmes that formed the backbone of US eugenics: involuntary sterilisation laws and the Immigration Restriction Act of 1924. The first sterilisation law was enacted in 1907, and by 1931 some 30 states had compulsory sterilisation laws on their books. By 1935 some 20 000 people in the United States had been forcibly sterilised, almost half of them in California (Hubbard 1997).
The Nazi movement took eugenics to the extreme with ‘racial cleansing’ and extermination of the weak, feeble-minded and children and adults with disabilities.
Killing children with disabilities is not that far removed from aborting foetuses with abnormalities. Antenatal screening tests for Down’s syndrome or neural tube defects are carried out regularly, the assumption being that the pregnancy will be terminated if an abnormality is revealed.
The front page of The Sunday Telegraph (21st May 2006) carried an article by Beezy Marsh (health correspondent) about pregnant women carrying a Down’s syndrome baby being pushed into having late abortions by doctors so that they would not have a ‘mentally retarded’ child. One mother in the article was offered termination at 35 weeks gestation. However, she refused and the article carried a picture of her 2-year-old son who, according to his mother, is happy and enjoying life. Marsh referred to The Down’s Syndrome Association who warn that doctors and health professionals with ‘outdated views’ on what life is like with a Down’s syndrome child are failing to provide a balanced view by encouraging abortion. The Association provides statistics for the article showing that there were 657 live births and an estimated 937 abortions for Down’s syndrome babies in 2004. This was a three-fold increase in terminations for this condition over the last 15 years. Marsh used figures from the Department of Health to support his argument. These included 124 late abortions over 24 weeks, every year for all ‘disabilities’: 18 of them over 32 weeks. Some agencies are now campaigning for the rights of the unborn child to prevent some of these terminations from taking place, but generally in the population there is a belief that every parent has the right to a ‘perfect’ baby (McLaughlin 2003).
Jenny Morris (1996) discusses the belief that if someone is severely disabled that life ‘is not worth living’ and that the population of non-disabled people cannot understand how severely disabled people can think that life is worth living. She highlights the case of Larry McAfee in the United States in 1989 who was so severely disabled that the Courts considered letting him have his life-support machine turned off because both they and he considered his life not worth living. However, disabled activists wanted to support him to live and argued that with the right degree of support he could have a reasonable quality of life. Unfortunately his health insurance ran out and he ended up institutionalised and extremely depressed and upset. In contrast, compare this case with that of Christopher Reeves who had a good quality of life, was able to travel and encourage other disabled people to make the most of their lives. This was possible because he had the financial resources to do it. Perhaps it is the society we live in and the lack of financial support that is more disabling to people than their physical condition.
PEOPLE WITH DISABILITIES—VALUING THEIR DIFFERENCE
People without disabilities assume that those affected by disability would want to conform to the norm and do everything in their power to achieve that. This is not the case and people with impairments may value their ‘difference’. This perspective was graphically explained in a BBC television programme called ‘One life — to see and be seen’ (BBC 1 24 May 2006). Tara, a 17 year old with congenital absence of the iris and progressive blindness, was being offered the chance of improving her eyesight through a donation of corneal stem cells from her mother. Everyone, including the doctor, parents and siblings, seemed to think that this was a good idea. But Tara had great misgivings about it, not just the surgery, but the fact that she might regain more sight than she could ‘cope with’.
Tara’s friends were largely partly sighted like herself. She also plays goalball at an international level. This game is for the visually impaired only and relies on them listening to a bell within the ball and saving goals as the ball is aimed at the goal post. It was obvious that this game was a big part of Tara’s life and if her sight was sufficiently improved she would not be able to play it at the same level. Nevertheless, she did agree to the surgery. Her mother said Tara did not know what she was missing, and was impressive in her commitment to help her daughter. However, there was the distinct indication that Tara felt pressured into the surgery. The outcome of the procedure was that Tara’s eyesight in one eye was sufficiently improved that she can now see objects held close to her face, but not so improved that she is not considered visually impaired. The programme highlighted some of the pressures put on people with impairments to try and conform to normality.
Similar pressures can be identified when looking at pioneering surgery on cochlear implants. Whilst undertaking a course in British Sign Language (BSL), I met a number of families at a social club for the hearing impaired where they had refused the offer of surgery for their congenitally deaf child. They feel that their lives were shaped by their lack of hearing; they have their own language, culture and social life which they do not feel is valued by the hearing population. Why make their children conform to ‘normal’ values, to be able to hear; why not accept the difference and diversity of their non-hearing culture?
Deafness and deaf people can be viewed from a medical or socio-cultural perspective. The medical perspective defines them as being disabled and in need of ‘treatment’ to try and enable them to hear and speak. The socio-cultural perspective is one where it is accepted that some deaf people are born into families where deafness is the ‘norm’. The children grow up in an environment where sign language is the favoured method of communication and speech is not part of this: the family is part of the deaf community (Miles 1988).
Historically deaf people have been stigmatised and isolated. ‘Deaf and dumb’ people were considered to be ‘feeble-minded’ and legally incompetent. As early as the fourth century, it was recognised that deaf families existed and communicated through ‘gestures’, however, there is no evidence to suggest that these families had full status in the society at that time. Speech was considered essential in the Roman Code of Justinian in the sixth century; without it individuals had no legal rights because they could not take part in religious ceremonies which demanded that they recited special formulae.
According to Miles (1988), Spain was one of the first countries in the sixteenth and seventeenth centuries to investigate the incidence of deafness overall. Concern arose because there was inbreeding between noble families which resulted in the spread of hereditary deafness. Whereas deafness in the lower classes was not seen as a problem because of their low status, in the upper classes it was viewed as problematic, as Spanish Law forbade anyone without speech from inheriting lands and titles. Juan Fernandez de Navarette (El Mundo — The Mute) was a court painter (1568–1579) from a wealthy family who was born hearing. He became deaf at the age of 3 years following an illness. His religious paintings are said to depict ‘signing poses’ as he and his tutor had developed signs to aid communication (see the picture ‘Adoration of the Shepherds’ by El Mundo). Juan Fernandez used signs with King Philip II and other court members and he was able to find interpreters to help him verify formal business dealings.
In England, Richard Carew’s survey of Cornwall in the 1580s describes an inhabitant of Saltash, who had been deaf for a long time, who signed to make himself understood and also lip-read as well. A servant called Edward Bone was also mentioned as being deaf ‘from the cradle’, but was considered ‘very alert’, religious and clean living and could ‘sign’ to make himself understood (Miles 1988). At that time communication between the hearing and non-hearing took three forms:
▪ Mime or mime-like signs understood by hearing people.
▪ Lip-reading, which some deaf people, and also some hearing people, could understand.
▪ Sign language—understood by most deaf people in their community but not by most hearing people.
At least there was some attempt to communicate with deaf people rather than just isolating them in their families.
By 1644 a physician called John Bulwer published a book called ‘Chirologia: or the natural language of the hand’. He illustrated it with drawings of typical hand shapes, some of which are still used in BSL today. His second book called ‘Philocophus, or the deaf and dumb man’s tutor’ (1648) was dedicated to two deaf brothers from a wealthy family. Bulwer believed that sign language was of a universal nature, but unfortunately that was not the case and signing varies from place to place, both at home and abroad. During the seventeenth century reports came from Spain about signing and lip-reading and together with Bulwer’s book, there was a greater interest in communicating with the deaf. One-handed and two-handed alphabets for spelling out English words were devised and there were similar developments in European countries. These alphabets were mainly used for the education of children from wealthy families who also wanted their children to speak; speech was generally seen to be proof of gentility and intelligence. From this time deaf people with speech were considered more desirable than deaf people who communicated by signing (Miles 1988).
In Britain, by 1760, education of the deaf was quite profitable and Thomas Braidwood set up a school in Edinburgh which taught oral and written skills to the deaf. For the next 80 years or so the Braidwood family had virtual monopoly in the field of deaf education. Braidwood moved from Edinburgh to London and in 1792 the first ‘charity’ school was opened under the charge of his nephew Joseph Watson. Similar schools developed throughout the country. This helped the development of the deaf community as children were brought together to learn, and sign language could be standardised.
Education of deaf people in France evolved differently and rather than demanding speech as the acceptable form of communication, sign language was accepted instead. However, the emphasis was on using correct French grammar and the signs developed showed every part of it. Teachers went from all over Europe to learn the technique, but eventually it was felt to be too cumbersome as a method of communication and was abandoned.
By the nineteenth century people travelled widely to learn about educating the deaf. Thomas Gallaudet came from Connecticut in 1816 and took back with him to America ideas about communicating and educating the deaf. Together with a Frenchman named Laurent Clerc, he played a major part in establishing the first school for the deaf in America; the work of the Gallaudet school is still influential in the United States today (Miles 1988).
As society developed and there was better education and more acceptance of deaf people, many were able to take up good positions of employment and found comradeship with the deaf community. The legal status of non-hearing people had improved, but there was still discrimination against the deaf community and an anxiety about a deaf variety of the human race evolving (following Charles Darwin’s book published in 1859). It was noticed that they met together, communicated in a way that hearing people did not understand and had their own clubs and newspapers. Alexander Graham Bell, who had just invented the telephone, was a Scottish-born American who himself was married to a deaf woman. He held eugenic views that hereditary deafness should not be passed on to future generations. He did not like sign language and felt that all deaf people should have speech so that they would integrate better with the hearing population. Bell was strongly influenced in his eugenic theories by research he conducted on a remote island off the coast of Massachusetts, USA. One in 55 of the population were deaf which was much higher than the mainland. The island had been settled in 1640 by men who came from Maidstone, Kent and the deafness had come from one of those men. Intermarriage had occurred and a large deaf community had developed. Bell wanted to eradicate deafness by forbidding deaf people from marrying. He wanted to break away from sign language as a form of communication and insisted on ‘oralism’ being taught in schools instead so that the deaf would have speech and be able to be understood by the hearing population. This belief, for which he actively campaigned, led to ‘oralism’ being reintroduced into schools and signing being banned. The ideal quickly spread through Europe at the expense of sign language. By the twentieth century BSL gradually disappeared from the classroom and deaf children were taught to speak. Deaf teachers were considered unfit for this task as their speech may have been limited and so they also disappeared from deaf schools.
Deaf children rebelled, however, and would sign amongst themselves when the teachers were not present. George Taylor and Juliet Bishop, editors of ‘Being deaf, the experience of deafness’ (1991) collected some harrowing accounts of how deaf children were forced to speak even when they were profoundly deaf. If they did not comply with trying to speak, they had their hands tied behind their backs to stop them from signing and were not given things until they vocalised that they wanted them. The aim was to try and make the child ‘normal’ i.e. speak so that they would ‘fit in’ with the hearing population. Attempts were made to use powerful hearing aids, which were often uncomfortable to wear and increased extraneous sounds rather than audible speech. The children and their parents were told that they were not deaf, just unable to hear very well (Fletcher, in Taylor & Bishop 1991).
However, there are still parents of deaf children who argue for ‘oralism’ i.e. wanting their child to speak even though they cannot hear. They feel that integration is the key to success for their children and want them to be accepted by the hearing population as they see speech as being the way forward. Heather MacDonald, a mother of three deaf children who have all learnt to speak, has put this case forward eloquently in Chapter 6 in Taylor & Bishop (1991). Perhaps the way forward is for ‘Total Communication’ which includes both ‘oralism’ (speech) and signing being encouraged as acceptable methods of communication.
Standards of deaf education had been causing concern for a number of years and in 1979 the first ever comprehensive survey of school leavers was carried out. Sadly the results revealed that deaf school leavers had a reading age of 8.75 years on average and their speech was mostly unintelligible (Ladd in Miles 1988). These findings led to a movement in the mid to late 1980s to reintroduce BSL into deaf schools and also hearing schools so that everyone had a chance to learn to sign.
BSL has survived because its users do not have any other reasonable means of communication. Although many young people were educated under the ‘oralist’ regime, they reverted back to signing in their own homes. Deaf clubs have formed in cities and towns up and down the country and there are often rallies and conventions where members meet together. As many deaf children are sent to boarding school away from where they live, they often meet up with old school friends at these events and exchange thoughts and ideas about their community.
Deaf children may have hearing parents and vice versa so hearing people also attend the clubs. They learn BSL and teach it to others so that more people can use it to communicate. BSL is accepted as a language in its own right and is the fourth language in Britain, the other three being English, Welsh and Scottish Gaelic. In 1988 the European Parliament called on member nations to recognise their own sign language as an official language of their country, yet BSL is still not fully recognised as a language in Britain (Smith 1996). The deaf community have their own authors, poets, musicians, entertainers and leaders and it is time they were recognised and valued for their differences.
Deafworks is an organisation campaigning to provide greater access for the deaf and hard of hearing to arts, cultural and tourism venues. The conference: ‘Opening Up!’ was a joint venture between Deafworks and the London Borough of Camden, Arts and Tourism which aimed to encourage greater access to these areas for the deaf (Deafworks 1999). Speakers from interested agencies discussed how best to facilitate the deaf community and proposed how they could be accommodated alongside hearing people, for example in theatres, cinemas and art galleries. A directory was published as a result of the conference so that deaf people could see what services were available to them in these areas.
Multiple stereotypes about people with disabilities abound. Gordon Hughes (1998) suggests the following:
▪ Feel ugly, inadequate and ashamed of their disability.
▪ Lives are a burden to us and barely worth living.
▪ ‘Crave’ to be ‘normal’ and ‘whole’.
▪ Naïve and lead sheltered lives.
▪ Cannot ever accept their condition—if they are cheerful and fulfilled, they are just putting on a brave face.
▪ See daily living as a challenge and want to ‘prove’ themselves.
▪ They are asexual or at best sexually inadequate.
▪ Any able-bodied person who marries them must have had a special reason for doing it—but not love.
▪ If a relationship fails, it is because of the disability.
There are many more stereotypes of a similar nature; generally they are very negative and serve to reinforce the belief that disability in some way is deviant and that stigma is attached to it. These stereotypes do not take into account the lives of prominent disabled people who have achieved great things in their lives, for example Tanni Gray Thompson (para-lympic gold medallist), David Blunkett (politician), Alison Lapper (artist—a sculpture of her pregnant torso is in Trafalgar Square). Unfortunately, disabled people are frequently viewed as a homogenous group and are not recognised as individuals with their own aspirations.
MODELS OF DISABILITY
To aid understanding and explain the world and specific concepts within the world, individuals formulate ideas and beliefs into what are often referred to as frameworks or models. These are sets of ideas or constructs which help the individual to make sense of their perceptions and thoughts. Models which are frequently used in the disability debate are shaped by society and life events experienced by the individual.