Critically discuss the advantages and disadvantages of disabled people undertaking disability research. Illustrate your answers with material from Chapter 13 by Lewis and Kellet in Reader B and the research paper by Monteith in chapter 9 of Reader A. In considering what are the advantages and disadvantages of disabled people undertaking disability research, it is first necessary to define what disability research is; what are the main issues concerning this type of research and whether there are advantages or disadvantages in disabled researchers undertaking such research.
Issues in Disability Research The word disability has a multitude of meanings. The term used to describe different disabilities can often convey a particular attitude towards people with disabilities. There are terms that are frequently used in the past, and still used by some people in the present day which are derogatory and convey a negative image of disabled people.
It is important for all researchers undertaking disability research to consider how they talk about disabled people, because the terms used may be perceived by others including people with disabilities in a different way from that intended (Lewis and Kellet 2004). Generic umbrella terms imply a degree of similarity between individuals and others within the same disability group. Many families with disabled children have been joined by professionals and academics in emphasising the need to see the child first and the disability second.
However, there are differing degrees of disabilities particularly with regard to blindness; the term visually impaired is used in preference to blind, because some children who are considered for educational purposes as blind can often see light and dark or even vague shapes, so these children can be thought of as having different degrees of visual impairment. Similarly hearing loss can vary from profound to mild. Around 10% of deaf children have a deaf parent, and the use of sign language within these children’s families makes them a cultural minority.
Many deaf people categorise themselves as “Deaf” with a capital D and see themselves as having a distinct and separate identity in the hearing world. Thus children born into families with deaf parents are more likely to see themselves and to be seen by their families as Deaf children, rather than children with hearing impairment. Another issue in disability research particularly where children with disabilities are being compared to children who are not disabled is what to call the latter.
Some researchers refer to these children as “normal”. However, the use of the word normal implies that children with disabilities are not normal. Because of this the term “typically developing” is often used to describe children without disabilities in research projects. Children with disabilities belong to other social groups such as families, age and peer groups, cultural and /or religious groups; disability is only part of their identity and should not be allowed to overshadow other factors which construct their identity.
Research into the development of children with disabilities provides valuable information into how disabilities affect development and provide insight into developmental progress of children without disabilities. However, Unwin in (Lewis and Kellet 2004) points out those researchers must consider the development of children with disabilities with care. If their development is under calculated, the affect of their disability on their development may be over calculated. Researchers must also ensure that the affect of a disability on development cannot be attributed to another problem or difficulty that the child may experience.
Children are often grouped together and labelled because of their disability e. g. As blind or with Down’s syndrome, this grouping suggests that the individuals in these groups share certain characteristics. Obviously such children will have some features in common but the nature of their disability may be very different. This is particularly true of those with profound and multiple learning difficulties. The severity and multiplicity of such impairment makes it highly unlikely that a homogenous group can be found within a population.
The same can be said to be true of any group of children or young people who are grouped together and labelled because they share certain characteristics such as the additional chromosome 21 that is present in all those with Down’s syndrome. Researchers will need to assess if the primary of the disability over-rides other factors in the child’s life for example the problems faced by children with disabilities are often attributed solely to the fact that they are disabled, whereas in fact other variables such as education or social environment may be in some cases contributory to their problems as much if not more than their disability.
An example of this would be if a child was accommodated in a residential school away from their family and their language development was delayed, the delay may not be a direct consequence of the disability, but may in fact be due to some aspect of their residential environment. Another problem in research into the development of children with disabilities is that researchers very often use methods of research with disabled children which have been used to study “typically developing” children. However such methods may not be appropriate for children with certain disabilities.
Despite all the problems which arise in research with children and young people with disabilities such research can make a marked contribution to creating a clear picture of these children’s lives and experiences Children and young people with disabilities are at an even higher vulnerability than other children. The issues of power relations become intensified. Ethical considerations need to be heightened and greater consideration given to gatekeepers in order to protect children with disabilities from becoming prey to unscrupulous researchers.
Disability thinking has moved away from the medical model, where the “problem” is seen to be within the child to a social model where society is seen as disabling not the child; this has encouraged research with its focus on the social environment of the children with disabilities. There has also been an increase in educational research which places a greater importance on the quality and flexibility of teaching approaches and less on pupil disability.
This has lead to the development of a research base for interactive teaching approaches with children who have a learning disability, which has replaced most behavioural research which was popular in the 1980’s. There are questions being asked as to whether able bodied researchers should be undertaking disability research. However, are there advantages in disabled researchers undertaking such research or do the disadvantages out way any advantages; and should research into disability issues be conducted by those best qualified to undertake it, be they themselves be disabled or able bodied.