" 'The law may protect disabled children's and young people's rights but it does not necessarily promote their inclusion in society.' Critically evaluate this statement.

TMA 04

Option 1

“ ‘The law may protect disabled children’s and young people’s rights but it does not necessarily promote their inclusion in society.’ Critically evaluate this statement.

In striving to express what I feel the term disability means, I have looked at two

options. The first is the dictionary definition. After trawling various online

dictionaries and finding some surprising wordings, The Cambridge Dictionary

definition was the one I felt was the most appropriate – “an illness, injury or

condition that makes it difficult for someone to do the things that other people do”.

What was also interesting was their examples of use of the word in sentences –

“She is deaf, but refuses to let her disability prevent her from doing what she wants to

do.” and “Trying to change attitudes to disability is an uphill struggle.” The second

option was to look at what disability meant to me as a disabled person, and I could not

express myself better than above. However, this proved to me that how the term is

viewed is very much in the eye of the individual, so when it comes to research, the

researcher has a great deal of differing factors to consider, In this assignment, I will

look at the subject of disability regards children and young people and highlight just

some of the problems that can occur whilst growing up. As having a disability can

make social inclusion more difficult, I will look in particular at Monteith’s paper

“Making Progress?: The Transition to Adulthood for Disabled Young People in

Northern Ireland” and see whether she fully achieved inclusion for all in her project.

As someone who despite being born with a disability, was not truly symptomatic or

even aware of the condition until my twenties, the transition from being and being

seen as able bodied to not has been one of immense struggle. I am not in a wheelchair,

wear make up, have children, and when I park in a disabled bay am more often than

not glared at with suspicion and disgust. But I am an adult, can fight my own battles,

and choose to cope with things in my way. For a child with a disability, things can be

very different and they may not have the emotional maturity to deal with labels and

the misguided opinions of others. As Lewis and Kellett write, “The words used to

describe people with disabilities often convey a particular attitude towards these

people and in turn this can result in expectations which may or may not be justified.” I

am a great believer in the fact that to truly understand a person or situation, you must

have first hand knowledge yourself. To apply this to research, I would lean towards

projects regards disability or, indeed, education as this is where my interest lies. As

Lewis and Kellett further state, ‘similar to the discourse that has grown up around

white researchers exploring black issues, questions are being asked about whether

able-bodied researchers should undertake disability research’. One of the major

points that could occur is regarding inclusion, where the researcher may not deem

a participant competent enough to partake in research, but by excluding them

jeopardises both the ethnicity of the project and the reliability of the results, and I will

discuss this in more detail later. However, it could be argued that ...

This is a preview of the whole essay

Lewis and Kellett further state, ‘similar to the discourse that has grown up around

white researchers exploring black issues, questions are being asked about whether

able-bodied researchers should undertake disability research’. One of the major

points that could occur is regarding inclusion, where the researcher may not deem

a participant competent enough to partake in research, but by excluding them

jeopardises both the ethnicity of the project and the reliability of the results, and I will

discuss this in more detail later. However, it could be argued that the able-bodied

researcher could look at the research less dispassionately, and that could be deemed

an advantage by bringing a fresh approach to the subject being researched.

My condition has one name, Syringomyelia. It has many varying symptoms and

combinations of symptoms, so to give someone the name of my condition does not

give that person a clear indication of my problems. However, whilst my condition is

rare, people do have very definite ideas of such conditions as blindness, Down’s

Syndrome and similar, and assume that sufferers have very set problems. Regards

research, it is, therefore, necessary to look very much at the wider picture and treat

each child as an individual in their own right, with their own symptoms, worries,

coping strategies, and as with any other child, personalities. Lewis and Kellett write

“..professionals and academics, as well as parents and families, have emphasised the

need to see the child or young person first and foremost, rather than the disability…”.

As disability also relates to mental health and learning difficulties, the physical state

of the child or young person with a disability is only one aspect to be considered. It is

also interesting to note that the term ‘special needs’ in schools can also relate to those

of exceptionally high capability, so children and young people with a disability should

not automatically be seen as disadvantaged. With such wide ranging issues

and concerns for the researcher to consider, it is very hard to come up with a research

method that will suit all participants equally, without fear of discounting certain

children due to their disability.

To consider children and young people with a physical disability as a separate entity,

the type and extent of their disability raises many differing difficulties as they grow

up. For example, in general it excludes the many physical activities that make

childhood so special, and team games that encourage working for each other with a

common aim. Sport can be a very social event and extend outside of the educational

setting, so can very much socially exclude those at a physical disadvantage. Of

course, a physical disability does not prevent you from having the same feelings as

your peers, and self image is a major part of growing up. There is also the

temptation to put all developmental difficulties down to the disability. As Lewis and

Kellett state, ‘We also need to be certain that any conclusions we reach as to the role

of a disability in development cannot be attributed to some other problem or

difficulty’. These issues and so many more come into carrying out research with

children and young people with, or indeed without disabilities, and the researcher

should be fully aware of the impact their approach and general manner can have,

regardless of research method. If I were carrying out such a project, I would choose

to incorporate a social event to include both disabled and non disabled parties, in an

attempt to raise the confidence in those with the disability and raise awareness and a

fuller understanding towards disability in those who are able bodied.

When looking at children and young people with learning difficulties, the problems

they encounter throughout growing up are often extremely difficult to assess, as

communication can be a problem, as well as the complexities of knowing how they

truly feel. As with physical disabilities, the range of problems and severities make it

impossible to generalise. Lewis and Kellett make a good point when they say that “the

severity and multiplicity of impairment renders it highly improbable that a

homogeneous group can be found from within this population.” Research in this area

is very likely to include gatekeepers which can be seen as dis-empowering the

individual. Whilst undertaking such a research project may seem a huge

responsibility, it is my opinion that the researcher should step up to that in order to

potentially improve the lives of one of the most disadvantaged sections of society.

For the child or young person with a disability, they are very likely to be aware that

they have something that makes them different from many others, but depending on

their upbringing and nature, may not view that as a drawback. Therefore the

researcher has to be extremely aware of their feelings. Whilst the law protects

children and young people in general, there are other legal frameworks in place that

are designed to protect children and young people with disabilities. However, as it is

hard to quantify disability, interpretation can be a grey area leading to confusion and

lack of adequate provision being provided. This places stress on families and carers,

as well as the child themselves. For a researcher, this also means that the frameworks

are hard to follow, but as a researcher should always be doing their very best to

protect their participants, making sure the study is ethically and morally correct is the

dominant factor in my opinion.

In the research paper ‘Making Progress? The Transition to Adulthood for Disabled

Young People in Northern Ireland’, Marina Monteith writes “Young people with

disabilities should have equal opportunities with others of their generation.” Whilst I

feel that this is a worthy sentiment, individual circumstances and preferences can, as

always, make it impossible to pigeonhole a certain group of society. The changes that

occur throughout childhood can be testing for any child or young person regardless of

disability, but anything that sets a child out to be different from the norm can magnify

the difficulty being experienced.

The question mark in the title of the research paper is a worrying factor for me, either

indicating that not enough is being done to help young people with a disability in

Northern Ireland, or that Monteith did not feel confident enough in her findings to

make a firm decision , thereby giving the impression that the research paper was not

as thorough as she had initially hoped. The term ‘Disabled Young People’ is also a

concern as the phrase, in my opinion, stresses the disability as the dominant factor. It

is, however, interesting to note that in Unit 13 of the Study Guide it says ‘..we use the

phrase ‘disabled children and young people’ rather than ‘children and young people

with disabilities’. This is to acknowledge that such individuals are more disabled by

society than by their impairment’. I personally prefer to say that I have a disability

rather than to say I am disabled, which I believe immediately puts me in a very

distinct category. This clearly shows how labelling has to be a very deeply thought

through process but even then, people will misconstrue what is implied.

It is clear that Monteith has made efforts to overcome potential difficulties

throughout. By using a research advisory group that included two people with

disabilities, one of whom was a young person, she strived to ensure that the

participants felt included in the process regardless of disability. Whilst she has

valued their opinions throughout the whole of the project, using only two people with

a disability is limiting. This dilemma is hard to resolve as even with a larger

number, each person is an individual in their own right and can only advise from their

viewpoint. Also, in Monteith’s defence, research projects can be governed by more

external factors such as funding, time limitations and available resources.

Monteith clearly failed to make her project fully inclusive by using an interview

method that meant nine of the participants with severe learning difficulties had to be

directly excluded. By interviewing their parents or carers, this dis-empowered the

young people in question, and I strongly feel more could have been done to include

them. Whilst she states that ‘consideration has to be given to communicating with

young people with learning difficulties’, she has not followed through extensively

enough on her own words. Methods could have been adapted to include all

participants and as Lewis and Kellett write ‘if disability research is to become

ethically purer and more socially inclusive the methodological design has to become

more flexible and creative’.

To conclude this assignment, inclusion of children and young people with disabilities

in society is a problem that can never be fully resolved by law, frameworks or similar.

The assignment question makes the assumption that all of these people want to be

included, yet some are perfectly content in the world they have created for

themselves, or feel more comfortable mixing in groups of people with similar

problems. The one thing that I did find interesting whilst researching this assignment

were the research projects detailed on the DfES website, This website contains details

of all research projects funded by the Department for Children, Schools and Families

(DCSF) and the Department for Innovation, Universities and Skills (DIUS), as well as

those projects previously undertaken by the Department for Education and Skills

(DfES). On searching published projects, a search result of 1400 was displayed. On

narrowing that down to the term ‘disabled children’, only six results came up. Whilst

one of these papers was titled ‘Preventing Social Exclusion of Disabled Children

and their Families’, children and young people with disabilities can not become more

included in society until people make an effort to include them.

Word Count: 2066

References

Lewis,V. and Kellett, M. ‘Disability’ in V. Lewis, M. Kellett, C. Robinson, S. Fraser and S. Ding (eds) Doing Research with Children and Young People, London: Sage in association with the Open University.

Monteith, M. (1999) ‘Making Progress? The Transition to Adulthood for Disabled Young People in Northern Ireland’ in V. Lewis, M. Kellett, C. Robinson, S. Fraser and S. Ding (eds) The Reality of Research with Children and Young People, London: Sage in association with the Open University.

Masson, J.. ‘The Legal Context’ in V. Lewis, M. Kellett, C. Robinson, S. Fraser and S. Ding (eds) Doing Research with Children and Young People, London: Sage in association with the Open University.

Cambridge Dictionaries Online [online], (last accessed 13 June 20080

Department for schools, childrens and families [online] ) (last accesses 13 June 2008)