University of East London
School of Social Science, Media and Cultural Studies
Voices of Disabled People: A comparative study to explore the North and South experiences of Independent Living
Student Name: Michelle Daley
Module: Dissertation (Social Sciences)
Submitted for: MSc NGO and Development Management
Submission Date: 24th September 2009
Chapter 1 – Introduction: 5 – 17
1.1 Research context
1.2 Purpose of the research
1.3 Reflective self
1.4 Understanding disability from a rights based approach
1.5 Independent Living
1.6 The Role of Community Based Rehabilitation (CBR) in promoting Independent Living
1.7 Structure of this research report
Chapter 2 – Background
2.1 History of the freedom struggle
2.2 Convention on the Rights of Persons with Disabilities promotes Independent Living
2.3 Why Development initiatives must address disabling barriers
2.4 Independent Living in developing countries
2.5 Why CBR and Day Centres cannot achieve Independent Living
Chapter 3: Research Design
3.1 Research context
3.2 Data collection
3.4 Limitation of the study
Chapter 4: Evidence
4.1 Conceptualisation of Independent Living
4.2 Barriers to achieving Independent Living
- Inaccessibly built environment
4.3 Why disabled people are not a homogenous group
4.4 The role of the State in promoting Independent Living
- Our reality
- Surviving with no or poor formal structures
4.5 Solutions: The future
Chapter 5: Conclusion
5.1 Way Forward
Appendix 1: Research Plan
Appendix 2: Interview questions
The purpose of this study is to establish whether there is a difference in how disabled people understand the concept of ‘Independent Living’, whether there is a shared experience amongst disabled people on disabling barriers and finally to identify whether Independent Living can be achieved in the South.
This is a qualitative research study which has adopted the disability emancipatory research approach and has been guided by the social model of disability. This approach sets out to ensure that it did not misrepresent disabled people by depicting them as ‘the problem’. Instead, it sought to identify the disabling barriers that results in their oppression and discrimination. This is different to many other research methods.
The study identified a number of key findings that result in disabled people globally being denied access to their basic needs (i.e. education, health care and employment), most notably in developing countries. In the most extreme situations disabled people are subjected to lives of abject poverty and they become voiceless.
The study also found that there is no difference in the way disabled people understand the concept of Independent Living. However, the way in which Independent Living is achieved, is largely determined by the role a State plays in protecting and promoting the rights of disabled people. For disabled people living in developed countries, there is some level of commitment made by Governments to improve the quality of life of disabled people but there are differences between people’s experiences in the North and South.
Disabled people’s experiences were further affected by the fact that the development agenda has largely ignored – them. This has removed opportunities for disabled people to have an input into decisions that will help to improve the quality of their lives and their living conditions.
These findings were pertinent to the study and further emphasised the need for all institutions to play a role in promoting and protecting the human rights of disabled people globally.
Finally this report concludes by drawing on the key findings from the study and presents a way forward for disabled people.
5. Chapter: Conclusion
5.1 Way Forward
The report has identified a number of key findings from developed and developing countries in how Independent Living is experienced by disabled people. This section will draw on these findings and use them to help present a suggested way forward.
- In order for disabled people to achieve Independent Living, development institutions must be made to adhere to the obligations of the UNCRPD (United Nations, 2007), to promote and protect the rights of disabled people. This is particularly important when operating in countries where there is no or poor commitment made by Governments to improve the quality of life for disabled people.
- All institutions must recognise disability issues from a human rights approach. This requires recognising that denying disabled people access to their basic needs (United Nations, 2007) is a violation of their human rights which creates a vicious cycle of problems that result in their social exclusion.
- International development agencies should encourage partnership and collaborative working with disabled people’s organisations at all levels as a means of helping to address the inequalities in development experienced by disabled people.
- Disabled people must be offered opportunities to become employed in these areas of work. Often the doors have been closed to disabled people. Barriers have denied them opportunities to take up employment and other opportunities which would help to minimise some of the inequalities in development.
- Disabled people must be recognised as experts in their own right. Often their expertise has not been given the appropriate recognition it deserves and usually goes unrecognised. It is important that these skills are harnessed as a useful tool for helping to bring about positive changes within development and thus improving the quality of life for disabled people.
- Development initiatives must recognise that disabled people are not a homogenous group. Each group must be given equal respect by the development agenda.
- Disabled peoples organisations must be resourced in order that they can empower others to know about their human rights. This will help disabled people tackle inequalities as well as improve their quality of life.
- Further research work in these areas is required in order to better understand the experiences of Independent Living in developing countries. The work must be conducted by a disabled people’s organisation with expertise in this area of work.
This study has attempted to understand whether there is a difference in the way Independent Living is conceptualised by disabled people in the North and South.
It is a qualitative research study that has been guided by the social model of disability, ensuring that it did not depict disabled people from a negative perspective. It sought to identify the disabling barriers that result in the oppression and discrimination experienced by disabled people. The study conducted a background literature review and a series of interviews (n=13) with disabled people globally. The responses by the interviewees played a key role in providing evidence for the report as well as helping to better understand the experiences of disabled people globally and also how they achieved Independent Living. There were a number of themes that the interviews generated. These were categorised into three groups: Conceptualisation of Independent Living, Barriers to Independent Living and the Role of the State.
The study found that there was no fundamental difference in the way disabled people globally understood the concept of Independent Living and that it was consistent with the notions of the Independent Living Movement. However, there was a difference between both developed and developing countries in the way Independent Living was achieved. This was largely dependent on the role played by the Government in improving the life chances of disabled people.
The report showed that Independent Living can be achieved in developing countries. For example, in Brazil a number of Independent Living centres have been set up, which has been achieved through the empowerment of disabled people who have supported other disabled people to achieve this.
The report also found that disabled people globally are denied access to their basic needs which results in them not being able to take an active role within society. The consequences for poor disabled people living in developing countries, were devastating. The lack of formal support structures and opportunities available to disabled people, have created a vicious cycle not only affecting the disabled people themselves but also whole families. The situation is further compounded for disabled people from minority groups (i.e. disabled children, women, and black people). It is these situations that have been ignored from development initiatives. Most alarmingly, disabled people have been ignored from the Millennium Development Goals which is the leading development initiative and has as one of its principal goals, eradicating poverty by 2015.
The inaccessible environment presents a significant discriminatory barrier to disabled people globally. For disabled people in developing countries, access to the built environment tends to be worse and practically impossible. The level at which a disabled person are socially excluded in developing countries is also determined by economic factors in the status and respect they were given. Where a disabled person is regarded as financially independent, they tend to have a better quality of life. The fact that disabled people are denied access to basic needs has to be recognised as one of the main causes of poverty and other issues. It has been the failure of development to understand that it is the cause and effect which creates these issues.
While the CBRs role is to serve disabled people in rural areas, in most cases their services are ineffective particularly at reaching those most in need. Many Governments and development institutions have also regarded CBR as the ideal service for promoting Independent Living but this has been disputed because it does not conform to the notions of the Independent Living Movement. The study also found that CBR shares similar characteristics to developed countries ‘day centres’ which too have failed to promote Independent Living or to tackle disability discriminatory practices. The report argues that these types of services cannot promote Independent Living because they contradict the fundamental principles of the Independent Living movement.
Although disabled people have struggled to achieve some level of Independent Living globally, nevertheless the experience for disabled people in developing countries is compounded by their situation, making it harder for them to achieve an improved quality of life. In view of these facts and also recognising the role of development, it is difficult to understand why development initiatives have done so little to help and encourage agencies and services to improve the life chances of disabled people. Independent Living is deeply rooted within the fundamental principles of human rights and thus it is about disabled people’s rights, dignity and equality. It is not only wrong but inhumane that disability issues have not been given equal recognition within development institutions and that they are not regarded as human rights issues.
Appendix 2: Interview questions
All the information received will be used and treated with the strictest confidence.
Research Question: Voices of Disabled People: A comparative study to explore the North (developed countries) and South (developing countries) experiences of Independent Living.
- Tell me your name?
- Tell me the country that you live in?
- Briefly tell me about yourself and your background (for example about your job, etc)?
- What are the general attitudes held about disabled people in the country that you live? Give examples
- Please briefly tell me about your involvement in the disability movement or other related work?
- How would you define ‘Independent Living’ and what it means to you?
- Does your country have a Centre for Independent Living, User Led Organisation or other similar organisation? If so tell me more about their service.
- Are there barriers that prevent disabled people from living a ‘normal life’ (for example poor attitudes, inaccessible buildings, cost of equipment, etc)? Give examples
- Are you aware of any services that assist and promote Independent Living of disabled people in your country (for example aid agencies, NGO’s or other similar organisations)? Give examples about the services they provide.
- What role do disabled people’s organisations or support groups play in informing society about disabled peoples’ rights? Give examples about the types of work carried out.
- Are there any legislation / policies in place to promote Independent Living or the rights of disabled people? Give names and examples of these policies / laws.
- As a way forward towards mainstreaming disabled people’s inclusion and participation in society, do you have any suggestions of how this could be achieved in your country?
- Do you have any additional comments that you would like to make?
If you would like a copy of the final report please provide me with your e-mail address. Unfortunately because the study is for academic purposes I will only be able to send the final report by e-mail.
Thank you for your support in this research
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