The evolving disability rights movement
Historically, people with disabilities have largely been provided for through solutions that segregate them, such as residential institutions and special schools (WHO & World Bank, 2011, p. 3; Schulze, 2010, p. 16; Rimmerman, 2013, p. 22). However, responses to disability began to change in the 1970s, driven by the self-organisation of people with disabilities across the world and by the growing tendency to see disability as a human rights issue (WHO & World Bank, 2011, p. 3; Rimmerman, 2013, pp. 20-22). This has resulted in policies shifting ‘towards community and educational inclusion, and medically-focused solutions have given way to more interactive approaches recognizing that people are disabled by environmental factors as well as by their bodies’ (WHO & World Bank, 2011, p. 3).
Disabled people’s organisations (DPOs)
Disabled people’s organisations (DPOs) were set up with a rights based approach to empowerment, with people with disabilities representing themselves rather than being represented by others (Barron & Amerena, 2007, p. 14). As a result their common slogan is ‘nothing about us, without us’. They emerged from the civil rights movements, including in former colonial countries, and exist at local, regional and national levels across the world, offering support and the opportunity to raise awareness and advocate for rights (Barron & Amerena, 2007, pp. 14-15; Rimmerman, 2013, pp. 20-21; Irvine, 2014, p. 162). They may require institutional strengthening and organisational capacity building in order to help them to increase the visibility of disability issues, promote inclusive development, and support rights advancement (Barron & Amerena, 2007, p. 7; Wapling & Downie, 2012, p. 39). Sometimes it is important to keep in mind that DPOs may only represent one type of disability, or they may represent the views of an elite, and thus they may not speak for all people with disabilities, such as women, rural dwellers, or people with disabilities who are not members of the DPO (Bruijn et al., 2012, p. 59; Trani et al., 2011, p. 1192).
Contributions as civil society actors to disability rights
Civil society actors in the form of DPOs and national and international NGOs were active participants in the drafting process of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), marking a paradigm shift in the way civil society interacts with multilateral institutions (Woodburn, 2013, pp. 75-76; Schulze, 2010, p. 19). An International Disability Caucus of DPOs and NGOs was created to present a cohesive agenda that would be both applicable and beneficial to all with disabilities (Woodburn, 2013, p. 82). The involvement of DPOs and NGOs led to the human-rights based focus of the UNCRPD, a definition of disability, and the inclusion of women’s rights – an article on disabled women and gendered language (Woodburn, 2013, pp. 85-89; Schulze, 2010). Through its adoption of a social model of disability, the UNCRPD is viewed as a landmark in the history of the disability rights movement (Meekosha & Soldatic, 2011, p. 1384). There are some concerns however that marginalised groups were not adequately represented in the discussions; for instance, fewer southern NGOs were involved (Woodburn, 2013, p. 90; Meekosha & Soldatic, 2011, p. 1383).
United Nations Convention on the Rights of Persons with Disabilities
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) affirms the dignity and human rights of all people with disabilities and rejects the link between ability and impairment (Wapling & Downie, 2012, p. 12). It does not create any new rights but clearly states that ‘persons with disabilities have equal access and a right to full and effective enjoyment of all human rights’ (Schulze, 2010, pp. 7, 13; WHO & World Bank, 2011, p. 9). The principles of the UNCRPD are: inherent dignity, non-discrimination, effective inclusion, respect for differences, equal opportunity, accessibility, gender equality and respect for the evolving capacities of children with disabilities (Wapling & Downie, 2012, pp. 18-19; Schulze, 2010, pp. 44-49).
Article 32 on international cooperation and Article 11 on humanitarian emergencies are unique, and require state parties and other actors in international cooperation to respect, promote and fulfil the rights and dignity of people with disabilities (Wapling & Downie, 2012, p. 22).
The Optional Protocol is a side-agreement to the UNCRPD. It establishes an individual complaints mechanism for the Convention, with a complaints body in the form of the UNCRPD Committee.
As of October 2015, there are 160 signatories and 160 ratifications to the Convention; and 92 signatories and 88 ratifications to the Optional Protocol. State parties to the UNCRPD are required to adopt legislation and other measures to promote and protect the human rights of people with disabilities, and can be held accountable to the UNCRPD Committee. States that have ratified the UNCRPD have the option of ‘progressive implementation’, whereby they are allowed to implement the Convention over a number of years (Groce et al., 2011, p. 1495).
UNCRPD as an advocacy and accountability tool
The UNCRPD is a powerful tool with which to measure the fulfilment of rights. It acts as a rallying point for lobbying activities, as it analyses barriers and provides a clearly defined and easily understood set of rights that are linked to common development themes (Wapling & Downie, 2012, pp. 17, 22; Groce et al., 2011, p. 1495; Meekosha & Soldatic, 2011, p. 1386). It has helped raise the political profile of disability issues within international development (Groce et al., 2011, p. 1495). People with disabilities and NGOs have also used the UNCRPD to hold their national governments to account. Even in states that are not signatories to the UNCRPD – such as Somalia, South Sudan and Tajikistan – disability activists encourage their government to sign and ratify it (Aldersey, 2013).
However, despite commitments to the UNCRPD on paper, in many countries there are still problems with its effective implementation and enforcement (Groce et al., 2011, p. 1495).
Putting disability on the international development agenda
Lack of disability in the Millennium Development Goals (MDGs)
The MDGs did not mention people with disabilities, and this is felt to have been ‘a lost opportunity to address the pressing social, educational, health and economic concerns of millions of the world’s most marginalized citizens’ (Groce, 2011, p. viii). The MDGs’ focus on national averages concealed whether processes were inclusive or equitable (Vandemoortele, 2011, p. 19). They have been criticised for incentivising the pursuit of the ‘low hanging fruit’ (i.e. providing for the easy to reach rather than those most in need) (Save the Children, 2012). Lack of explicit mention of people with disabilities resulted in the lack of systematic inclusion of people with disabilities in programmes and policies, and lack of monitoring of disability-related statistics (Groce, 2011, p. x).
Disability inclusion in the Sustainable Development Goals (SDGs)
Local, regional and national DPOs and NGOs led the calls for disability to be included in the MDGs and SDGs (Groce, 2011, p. ix; Mitra, 2013, p. e178; Al Ju’beh, 2015, p. 34). The final outcome document of the post-2015 agenda, Transforming our world: The 2030 agenda for sustainable development, is disability inclusive and, pledges to leave no one behind, with eleven explicit references to people with disabilities. It notes that more than 80 per cent of people with disabilities live in poverty, which puts people with disabilities at the centre of poverty eradication throughout the agenda (Lockwood, 2015). It directly references people with disabilities under five of the seventeen goals, in relation to education, growth and employment, reducing inequality, safe and inclusive human settlements, and data collection and monitoring of the SDGs. It commits to using data which is disaggregated by disability. People with disabilities are also included wherever vulnerable is referenced (18 times), in line with paragraph 23.
The SDGS are described as ‘a powerful tool that people with disabilities can use nation by nation to argue for their inclusion’ (Haslam, 2015). The strong focus on disability in ‘so many national policy areas within this document, such as employment, education and transport, gives clear direction for development planners and thinkers’ (Haslam, 2015). However, there are some concerns about the lack of explicit references to people with disabilities in relation to health and gender (Lockwood, 2015). In addition, it is considered very important that the indicators for the SDGs contain explicit references to people with disabilities.
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