- freely available
Sustainability 2013, 5(10), 4152-4182; doi:10.3390/su5104152
Abstract: The purpose of this study was to examine the role and visibility of disabled people in the discourses of various global policy processes related to sustainable development and the Post-2015 development agenda. This article makes several recommendations for strengthening the role of disabled people in these discourses. The research addresses the question of how the disability community and sustainable development community relate to each other in these discourses. This study provides quantitative and qualitative data on three aspects of the relationship. One set of data highlights who is seen as a stakeholder in general and the visibility of disabled people in the social sustainability, sustainable consumption, Rio+20 and Post-2015 development agenda proposals discourses and what participants of the online consultation for a disability inclusive development agenda towards 2015 and beyond had to say about the issues of visibility of disabled people in development discourses. A second set of data illuminates the attitudes towards disabled people evident in the SD discourses including through the eyes of the participant of the online consultation for a disability inclusive development agenda towards 2015 and beyond. The final set of data compares the goals and actions seen as desirable for the advancement of SD evident in the SD literature covered and the online consultation for a disability inclusive development agenda towards 2015 and beyond. This study interpreted the data through a disability studies lens. The study found that disabled people were barely visible to invisible in the SD literature covered, that the goals and actions proposed in the SD discourses are of high relevance to disabled people but that these discussions have generally not been explicitly linked to disabled people. It found further that disabled people have clear ideas why they are invisible, what the problems with development policies are and what needs to happen to rectify the problems. It found also that there was a lack of visibility of various SD areas and goals within the disability discourse. This paper provides empirical data that can be used to further the goal of mainstreaming of disabled people into the SD and Post-2015 development discourses as asked for in various high-level UN documents. However, we posit that the utility of our paper goes beyond the disability angle. Our quantitative data also highlights other forms of social group visibility unevenness in the literature and as such, we argue that the data we present in this paper is also of use for other stakeholders such as youth, women and indigenous people and also for NGOs and policy makers.
Sustainable development (SD) has been discussed for quite some time  and increasingly since SD was defined in the Brundtland Report as follows: “development that meets the needs of the present without compromising the ability of future generations to meet their own needs”. It contains within it two key concepts:
the concept of “needs”, in particular the essential needs of the world’s poor, to which overriding priority should be given; and
the idea of limitations imposed by the state of technology and social organization on theenvironment’s ability to meet present and future needs .
One of the outcomes of the SD discourse was the generation of the Millennium Development Goals (MDGs) in 2000. Eight cohesive goals aimed to address the needs of the poorest and most marginalized people globally, which are supposed to be achieved by 2015 . Efforts are underway to link sustainable development goals (SD) with the Post-2015 development agenda. It is well documented that disabled people are missing from the MDG discourse (see Section 1.1 and Section 1.2). Our paper provides missing but needed qualitative and quantitative data highlighting the situation of disabled people in the social sustainability, sustainable consumption, Rio+20 and Post-2015 development agenda proposals, and the Post-2015 development discourses. It provides, furthermore, data on the views of disabled people on their situation related to development discourses. We also provide quantitative date related to other social groups and in general we submit that the data we report is of use to NGOs, INGOs, policy makers, academics and others involved in SD discourses whether they work on disability issues or focus on other social groups.
1.1. The Reality of Disabled People in MDG Discourses
Article 32 of the UN Convention on the Rights of Persons with Disabilities covers the demand that international co-operation, including international development programs have to be inclusive of and accessible to persons with disabilities . The United Nations General Assembly had numerous resolutions on the topic of the MDGs and disabled people since 2007 . Furthermore, numerous reports from the Secretary General of the United Nations covered the topic . The Secretary General report, Keeping the Promise: Realizing MDGs for Persons with Disabilities Towards 2015 and Beyond  had many recommendations such as: synchronization between different international normative frameworks on disability, including the Convention, the World Programme of Action and the Standard Rules; including disabled people in the implementation, monitoring and evaluation of MDG goals; generation of disability data and statistics using established procedures; development of short-term, medium-term and long-term disability strategies for the inclusion of disability concerns into the MDGs so that persons with or without disabilities have equal access to the social protection floor and programs; all aspects of MDG processes should be accessible; increase awareness about disability, accessibility and the MDG and capacity-building and partnerships should be generated amongst disability and other social organizations, academic institution, legal groups and governments.
However, the original MDGs and their indicators did not mention disabled people. Furthermore, all but the 2010 MDG report  did not mention disabled people at all. The 2011 United Nations report Disability and the Millennium Development Goals: A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts written by Nora Groce from the Leonard Cheshire Disability and Inclusive Development Centre, based at University College London, attributes the exclusion of disabled people in MDG discourse mostly to the lack of recognition of disability as a cross-cutting issue by international agencies, donors, governments and other actors in development arena which, according to the report, led to a low priority of disability issues in international development .
1.2. Action Taken by the Disability Community
Disabled people have voiced their discontent in not being a part of the MDG process for many years [9,10,11]; disabled people mentioned as early as the 2011 Durban declaration of Disabled People’s International (DPI) that they expect to be part of the Post-2015 development goal agenda setting . The online consultation for a disability inclusive development agenda towards 2015 and beyond moderated by a member of the International Disability Alliance that took place between 8 March and 5 April 2013 , which is analyzed as a part of this paper, is just one effort to ensure a higher visibility of disabled people than before.
The results of the consultation are to inform the United Nations General Assembly, who will hold a High-Level Meeting on Disability and Development on 23 September 2013, with the overarching theme “The way forward: a disability inclusive development agenda towards 2015 and beyond”. The meeting is to address issues such as barriers to the realization of MDGs for disabled people; best practices that lead to the inclusion of disabled people in development; and an increase in quality and availability of disability data and statistics, which is seen as a prerequisite for development programs that can meet the needs of disabled people. The meeting is to identify concrete actions to be taken to employ the CRPD in order to (a) generate an inclusive society and development agenda; (b) generate an accessible environment and (c) identify the roles of relevant stakeholders such as civil society including organizations of persons with disabilities, international organizations, development agencies, academic institutions and the private sector. One particular problem the meeting plans to address is how to keep all the stakeholders up to date on the knowledge, expertise and skills needed to promote inclusion of disabled people .
1.3. Analyzing the SD and Post-2015 Development Discourses through a Disability Studies Lens
Disability Studies is an interdisciplinary/multidisciplinary academic discipline that “recognizes that disability is a key aspect of human experience, and that the study of disability has important political, social, and economic implications for society as a whole, including both disabled and nondisabled people” [14,15]. Disability studies “refers generally to the examination of disability as a social, cultural, and political phenomenon in contrast to clinical, medical, or therapeutic perspectives on disability” . As it relates to the here presented topic disability studies looked over time at various aspects of development agendas in general and SD in particular [17,18,19,20,21,22,23,24,25,26]. Here we add qualitative and quantitative data to the knowledge pool and we interpret the results through the lens how they impact the lives of disabled people and their efforts to be heard in the development discourses. In the next section, we outline our data sources and coding procedure. In Section 3, we provide the results to our research questions. In Section 3.1 the question is answered who is seen as a stakeholder in the social sustainability, sustainable consumption, Rio+20 and Post-2015 development agenda proposals discourses and especially what is the visibility of disabled people in these discourses. This is followed by answers to the research question of what members of the discussion forum disability and the Post-2015 development goal agenda have to say about the issues of visibility of disabled people in development discourses, disabled people as stakeholders and the expectation disabled people have of the other stakeholders present in the discourses. Section 3.2 provides the answer to the question of attitude towards disabled people. Section 3.3 provides data addressing the question of what goals and actions items are seen as desirable in the social sustainability, sustainable consumption, Rio+20 and Post-2015 development agenda proposals discourses and in the online consultation for a disability inclusive development agenda towards 2015 and beyond . In Section 4 we discuss how the goals and actions identified as desired in the SD literature are linked to and influenced by disabled people and how they could impact disabled people. We furthermore discuss the potential impact of the envisioned goals and actions mentioned by disabled people in the online consultation for a disability inclusive development agenda towards 2015 and beyond  on the SD/MDG and Post-2015 development discourses and people and institutions involved in SD/MDG and Post-2015 development. Finally, in Section 5, we provide some recommendations as to future steps that should be taken in these discussions.
2.1. Data Source
2.1.1. Data Source: Sustainability Consumption and Social Sustainability Discourse
We searched the following databases: Scopus (full text), EBSCO (All) (full text), Web of Science (topic) and JSTOR (full text) for the keywords “social sustainability” or “sustainable consumption” (no time frame limit beside what is covered by the databases). Research Information Systems (RIS) files (including the abstracts) of identified articles were imported into the software Knowledge Share (KSv2) version 2.1.3 . This software eliminated duplications of abstracts due to an article being indexed in more than one of the databases and we ended up with 1909 abstracts covering social sustainability and 1122 abstracts covering sustainable consumption. These abstracts were then used for content analysis to answer quantitative the research questions of visibility of disabled people in sustainability consumption, social sustainability discourse, goals and themes, and action items desired in these discourses.
2.1.2. Data Source: Rio+20 Discourse
We searched academic literature (articles from peer-reviewed journals), non-academic source (IISD reporting service) and newspapers (New York Times and newspapers from the Canadian Newsstand, n = 300) for data about the United Nations Conference on Sustainable Development (Rio+20).
For the academic data, we used the same procedure and databases described in Section 2.1.1. with the following differences: (a) we searched the databases for the phrase “Rio+20” and (b) after elimination of duplications, the obtained 409 abstracts were not used as a sources for content analysis, but were first reviewed by two of the authors separately, in which both authors chose to accept or reject the abstracts based on relevance to the research. The software Knowledgeshare  then compared the judgment of the two reviewers for level of agreement generating a kappa factor of 0.88. The two reviewers resolved the disagreements they had through discussion. This process led to the identification of 99 abstracts for which it was deemed useful to obtain the full articles and these 99 articles were used for content analysis.
As for non-academic sources we investigated the full text of three types of sources the International Institute for Sustainable Development (IISD) Reporting Services, the Canadian Newsstand and the New York Times via the University of Calgary Proquest online database and the Rio+20 outcome document The Future we want . For the IISD service, we downloaded every article that was about Rio+20 (n = 79) (searched 1 April) (we did not set any time limits as to documents but looked at all present). As for newspapers, we searched the Canadian newsstand first for the term “Rio+20” anywhere which yielded 312 results. However, for the purpose of this study we were only interested in what these newspaper articles would say about disabled people. Having added the search term “disability” or “impairment”, or “disab” or “disabilities” or “disabled” or “impair” to the search string led to the result of no hits meaning that none of the 312 articles covered disabled people within the framework of Rio+20. For the New York Times (NYT) we followed the same search strategy with the same result of no content that covered Rio+20 and disabled people.
These documents were used to answer quantitative and qualitative the research questions of visibility of disabled people in Rio+20 discourses and goals and themes and action items desired in Rio+20 discourses.
2.1.3. Data Source: Discussion Forum of Disability and the Post-2015 Development Goal Agenda Discourse
On 7 April, we downloaded all the comments of the online consultation for a disability inclusive development agenda towards 2015 and beyond moderated by a member of the International Disability Alliance. This consultation took place between 8 March and 5 April 2013 . The following questions were asked and the following comments were received (n = comments/n = pages).
Q.1. What are the major CHALLENGES to implementing development policies and programs for persons with disabilities? (n = 170/77);
Q.2. What approaches/actions have been SUCCESSFUL in promoting the inclusion of disability in development? (n = 74/36);
Q.3. What specific steps, measures or ACTIONS should be taken to promote the goal of a disability inclusive society? (n = 102/54);
Q.4. What are the ROLES of the relevant stakeholders? (n = 61/26);
Q.5. Any other suggestions or recommendations for the High-level Meeting? (n = 87/37).
All the comments were used for quantitative and qualitative content analysis to answer the research questions of what participants of the online consultation for a disability inclusive development agenda towards 2015 and beyond had to say about the issues of visibility of disabled people in development discourses and the attitudes towards disabled people evident in the SD discourses and what goals and actions do participants envision for SD and the Post-2015 agenda.
2.1.4. Data Source: Post-2015 Development Goal Proposal List
To gain information as to goals envisioned for the Post-2015 development agenda we downloaded on 12 March all the Post-2015 development proposals collected by Post2015.org  and we generated one file from the whole list (n = 208 pages) for further content analysis to answer the research questions of visibility of disabled people in SD discourses and goals and themes and action items desired in post-2015 development goal proposal discourses.
2.1.5. Data Source: Google Scholar on “Sustainable Consumption of”
We searched Google Scholar (on 20 March 2013) for the phrase “sustainable consumption of” which yielded 848 results of which 656 were usable (in English and covering the topic) in order to generate quantitative data on what is seen in need of being sustainable consumed.
2.2. Procedure for Analyzing the Data Sources
We used ATLAS.ti©, a qualitative data analysis software (CAQDAS) [30,31], for generating qualitative and quantitative data answering the research questions. ATLAS.ti© allows the researcher to analyze imported sources of data that consists of PDF, Word, html, audio and video files. After we imported all sources mentioned before into ATLAS.ti© we performed hermeneutical keyword coding. We employed various coding strategies; one being a deductive strategy where we used a set of predetermined terms fitting the coding analytical framework of disability studies [14,15] and the research questions. This list was a starting point and by no means the endpoint. However, it allowed us through the auto-code function of ATLAS.ti© to search all documents of our different research sub-projects for a given word; for example all our sources with the exception of the consultation of disabled people documents were searched for the term impair* (catching impaired, impairment, impairments) and disab* (catching disabled, disability, disabilities) allowing us to right away analyze the visibility of disabled people in the documents of the different discourses we investigated.
Another coding strategy was to use the “word cruncher” function of ATLAS.ti©. This function generates a frequency count of all the words showing up in selected documents; words from this list were grouped according to themes we could identify in the list for example various words represent social groups and so we could ascertain from this list which social groups are visible and which are not in the documents coded.
Finally, we employed an inductive and iterative coding strategy, in which articles were read and when a theme was identified, we used the free coding option to generate a phrase that represents the theme and added this phrase to the coding list.
For any given source, at least two authors performed the coding to increase reliability, and differences were resolved during our discussions.
Once coding was finished we used ATLAS.ti© to generate the frequency of certain themes (quantitative data) and to generate a list of quotations of all sentences a given searched word is present in (qualitative data).
2.3. Limitations of Our Study
This study only covered articles from certain academic databases. Furthermore, in the case of the identification of goals and action item evident in academic articles related to sustainable consumption and social sustainability we analyzed only the abstracts not the full articles. In regards to the list of hits for “sustainable consumption of” we generated from Google Scholar we only looked at the abstracts visible in Google Scholar and did not analyze the full articles. As to the Rio+20 academic document and the ISSD documents we only looked at the visibility of disabled people. For data on goals and themes and action items evident in Rio+20 discourses we only looked at the Rio+20 outcome document The Future we want . Furthermore, for the Post-2015 development goals proposal list we analyzed only the description of the proposals as visible on the webpage and did not analyze the individual proposals. As to results related to goals and actions envisioned we only listed double digit output results that the WordCruncher function of Atlas-ti generated, although we also obtained single digit output results. However, we think that the lists sufficiently demonstrate what is and what is not discussed as it stands, and the inclusion of only double digits provides a more concise and meaningful presentation of the findings without providing overwhelming data. In regards to stakeholders mentioned, we list all of them without cut-off as the list is small enough.
Section 3 is organized into three sections covering the three research questions. Section 3.1 provides quantitative data (Table 1) on who is mentioned as a stakeholder in our data sources covering academic coverage of social sustainability and sustainable consumption, the Rio+20 outcome document, the Post-2015 development agenda proposals and the views of participants of the discussion forum of disability and the Post-2015 development goal agenda . Section 3.1 provides furthermore qualitative data on the views of participants of the disability and the Post-2015 development goal agenda on their own visibility in the development discourses and how it should be rectified. Section 3.2 provides qualitative data on what participants of the disability and the Post-2015 development goal agenda view as the attitude toward them and the problems it causes and what is needed to fix it. Section 3.3 provides quantitative data (Table 2 and Table 3) on what goals and actions are seen in need of being tackled as evident in the academic coverage of social sustainability and sustainable consumption, the Post-2015 development agenda proposals and the views of participants of the discussion forum of disability and the Post-2015 development goal agenda . It provides also qualitative data on goals evident in the Rio+20 outcome document The Future we want .
|Stakeholder||Social Sustainability (n=)||Sustainable Consumption (n=)||Rio+20 outcome document (n=)||Post-2015 development agenda proposals (n=)||Discussion forum of disability and the Post 2015 development goal agenda (n=)|
Discourses involve people and people have a stake in discourses. From a disability studies perspective the question arises who are acknowledged as stakeholders in a given discourse and whether that includes disabled people.
3.1.1. Quantitative Data on Stakeholders Visible in SD Discourses
Table 1 highlights the stakeholders mentioned in the social sustainability, sustainable consumption, Rio+20 outcome document, Post-2015 development agenda proposals, and discussion forum of disability and the Post-2015 development goal agenda documents.
3.1.2. Quantitative and Qualitative Data of How Disabled People Are Mentioned in the IISD Earth Negotiation Bulletins
As to the IISD Earth negotiation bulletins we did not perform a full stakeholder analysis but simply looked how often disabled people were mentioned and found that they were mentioned n = 3 as follows: The IISD Earth negotiation bulletin from 30 May 2012 about the UNCSD informal consultation mentioned that the EU, G-77/China, Lichtenstein, New Zealand, Norway, Iceland, Grenada and the US supported including a reference to disability. In relation to the Summary of the United Nations Conference on sustainable development: 13–22 June 2012 the IISD Earth negotiation bulletin from 25 June 2012 mentioned that disabled people among others were mentioned around sustainable cities and human settlement. The plan of implementation of the 2002 World Summit on Sustainable Development states: “There is an urgent need to address the causes of ill health, including environmental causes, and their impact on development, with particular emphasis on women and children, as well as vulnerable groups of society, such as people with disabilities, elderly persons and indigenous people” .
3.1.3. Qualitative Data of How Disabled People Are Mentioned in the Rio+20 Outcome Document the Future we Want
In the Rio+20 outcome document The Future we want  disabled people are mentioned as follows: “Sustainable development requires the meaningful involvement and active participation of […] and persons with disabilities”; “green economy policies in the context of sustainable development and poverty eradication should: enhance the welfare of […] persons with disabilities”; and finally, concrete topics related to disabled people included access to education, inclusive housing, social services, and a safe and healthy living environment for all.
3.1.4. Quantitative and Qualitative Data on the Views of Members of the Discussion Forum of Disability and the Post-2015 Development Goal Agenda on Their Role and Situation as a Stakeholder
In Section 3.1.4 we report data on relevance and reality of disabled people as stakeholders generated by the participants of the discussion forum of disability and the Post-2015 development goal agenda . As to the relevance of disabled people as stakeholders we found that disabled people want to be part of the discourse but believe they are invisible. Indeed the invisibility of disabled people was one main theme evident in the discussion forum of disability and the Post-2015 development goal agenda . The participants provided numerous reasons for the invisibility of disabled people, voiced the need for being visible and what they expect from the non-disabled stakeholders. The participants painted a picture that suggests a systemic invisibility of disabled people whereby the invisibility is evident on various levels such as in their community and in legislation, policies, programs and activities . The lack of visibility is contributed among other to the legal framework, poor political will, lack of disability-disaggregated data and lack of ability of disabled people to advocate for themself due to a lack of understanding of the issues because they do not have the same level of education. Linked to the theme of invisibility is the theme of needing to participate. Many of the discussants talked about the need for inclusion with terms such as inclusive being mentioned (n = 11,683); participation (n = 8744); inclusion (n = 6813); cooperation (n = 1550); collaboration (n = 963) and participatory approach (n = 312).
To give just one quote: “Lack of participatory approaches—A key challenge undermining all this is the gap in ensuring that people with disabilities and/or their representative organizations (DPOs) take an active part in planning, implementing, monitoring and evaluating development responses, thereby having a saying what is needed to respond to their priorities. Initiatives enabling DPOs to develop capacities and engage in direct advocacy to change this are still insufficient” .
Many roles were envisioned for the various stakeholders. We want to highlight in more details here the roles mentioned for academics and academic institutions in the consultation as their role is less often discussed in the literature than the other groups. We also want to highlight expectations of them as education is a big enabler of development and is listed in all SD discourses we investigated in this study. Furthermore, our study looked at the Post-2015 Development Goal Agenda through a disability studies lens. And disability studies scholars are seen to be accountable to academia and disabled people .
In this consultation the following roles were envisioned for academics and academic institutions (we use quotes here so people who want to find the original comments can search the consultation document for a quote to, for example, identify the author of a given quote; we find this important given that the open access feature of the journal allows non-academic disabled people to access the article who might be interested in certain comments and want to find these comments without reading the whole consultation):
“[w]ork closely with all other stakeholders in the area and undertake research which can provide an evidence base for addressing relevant policy and practice challenges”;
“should undertake research on relevant topics to increase knowledge and understanding of the CRPD and the human rights-based approach to disability, and to develop tools for development programming and planning”; “monitor CRPD”;
“provide evidence for effective inclusive practices in development/research”; “include disability as a topic in relevant study courses”;
“develop, organize and monitor specific study courses e.g., for rehabilitation professionals and inclusive education”;
“to research, publish and interrogate reliable data on disability and ensure that it is disseminated to inform policy and programs and the appropriate levels”;
“to conduct action research to highlight and develop efficient tools and methods to accelerate disability-inclusive policies and practices”.
“to harmonize efforts towards improved data collection methods and systems”;
“teach universal design”;
“capacity building and awareness-raising throughout society”
“encourage awareness and disability studies at schools, universities and other educational institutions”; “support students with disabilities”;
“push for disability inclusive educational institutions”.
As to academic institutions the following was proposed:
“[b]ecome disability inclusive institutions so all students can access sources of education”;
“provide disability awareness in all curricula”;
“support research on disability”;
“ensure that all data is disaggregated by disability, ethnicity, age, and gender”;
“conduct research to sharpen the tools of inclusive development”;
“create knowledge base on inclusive development both in policy and practice”;
“contribute to data collection methods and systems”;
“research to enhance the access of persons with visual disabilities to affordable assistive devices and technology”;
“in terms of ways forward, opportunities for enriched and fulfilling lives within disability”;
“inclusive pathways throughout the education system with effective support mechanisms and opportunities to excel”;
“partnership programs with the business, council and private sectors to develop inclusive communities”;
“inclusive communities within the educational establishments themselves at all levels”.
“[p]rograms to develop disabled leaders”;
“make it real”;
“research institutions should undertake research on issues of persons with disabilities”;
“[r]esearch on technology and innovations designing products and services accessible for all”;
“[t]raining and sensitization on the rights of persons with disabilities across sectors”.
3.2. Attitude towards Disabled People
Another important topic from a disability studies standpoint is what the narrative is around disabled people and the attitudes towards them. Given that disabled people seemed to be mostly ignored in the SD discourses we covered, one cannot say much about attitude toward disabled people other than the fact that they are neglected. In addition, one cannot say much about how they are portrayed, as they are not mentioned enough. However participants of the discussion forum disability and the Post-2015 development goal agenda  had views on this topic. The problem with attitudes towards disabled people and their needs was a main theme running through the online consultation with the term attitude mentioned (n = 1607) and the term stigma related to disabled people was also mentioned (n = 541).
To give just three quotes:
“The ‘don’t bother and don’t care’ attitude of authorities and the society” .
“Discrimination and negative attitude continue to be a problem. The language widely used to describe disability serves to perpetuate negative stereotypes and prevent full inclusion” .
“Inferior and disdainful attitude towards persons with disabilities due to conditions ranging from lack to inadequate to misinformed views of persons with disabilities, which are often expressed in how Persons with disabilities are identified, defined and presented in national and local laws and mass media” .
This facet of the relationship between disabled and so called non-disabled people did not show up in other documents we investigated as part of this study that mentioned disabled people. In the consultation, many questioned the prevailing medical model of disability which was seen as detrimental to being included in development and other processes. To give two quotes:
“In many countries, and in a majority of less developed countries, disability is currently addressed using the Medical Model which promotes the provision of care by the State and family, and not on the Social Model of individual independence and full inclusion in all aspects of daily life, including education, employment, transportation, recreation, etc.” .
“The fight for the promotion and protection of the rights of people with disabilities entails changing people’s attitudes so that they move away from the welfare and medical model of thought which views disability as a personal tragedy which limits the capacity of the disabled person to participate in the mainstream of society and that it is the responsibility of the people with disabilities themselves to try to fit in with the world as they find it” .
3.3. Goals, Themes and Items for Action Evident in SD Discourses
Section 3.3 provides quantitative data of what goals and actions items are seen as desirable in the social sustainability, sustainable consumption and Post-2015 development agenda proposals discourses (Table 2) and in the online consultation for a disability inclusive development agenda towards 2015 and beyond  (Table 3) followed by quantitative data for what is seen in need of “sustainable consumption of” and qualitative data of what goals are evident in the Future we want Rio+20 outcome document .
3.3.1.Goals and Items for Action Evident in Social Sustainability, Sustainable Consumption and Post-2015 Development Agenda Proposals
|Goals, themes and items for action||Social sustainability (n=)||Sustainable consumption (n=)||Post-2015 development agenda proposals (n=)|
|water (various forms)||335||205||84|
3.3.2.Goals and Items for Action Evident in Discussion Forum of Disability and the Post-2015 Development Goal Agenda
|Goals, themes and action items evident||Discussion forum of disability and the Post 2015 development goal agenda (sees as in need of improvement)||Discussion forum of disability and the Post 2015 development goal agenda |
(sees as in need of fixing)
|Discussion forum of disability and the Post 2015 development goal agenda |
Question 3 What approaches/actions have been SUCCESSFUL in promoting the inclusion of disability in development?”
|Discussion forum of disability and the Post 2015 development goal agenda What specific steps, measures or ACTIONS should be taken to promote the goal of a disability inclusive society?”|
|water (various forms)||216||411||119|
|access in general||3549||10880||3237|
|lack of awareness of needs of disabled people, their rights, the non-medical model of disability and existing laws related to disabled people||1591|
|lack of commitment||847|
|non medical model||727|
|lack of political will||480|
|anything that made things accessible||1630|
|anything that led to an increase in awareness||1101|
|anything that changed attitude||408|
|anything that led to collaborations||394|
|anything that led to cooperation||317|
|anything that provided evidence||230|
|anything that decrease barriers||663|
|implementing Convention on the rights of persons with disabilities (CRPD)||2151|
|CRPD as a tool to implement national laws||882|
|action against discrimination||1730|
|need for capacity improvement on the side of disabled people and non-disabled people||722|
|action against negative attitude||358|
|action against stigma||164|
|action against invisibility||57|
3.3.3. Possible Goal Areas for “Sustainable Consumption of”
As to targets for “sustainable consumption of”, we found the following targets for sustainable-consumption using Google Scholar: natural Resources (n = 109); Food (n = 108); Environment (n = 72); Water (n = 66); Products for households and people (n = 48); Energy (n = 46); Economics/Income (n = 15); Shrimp, Living Sea Resources and forests (n = 11); Tourism, Electronics/Technology and Employees (n = 10). Two targets were mentioned (n = 8); one target (n = 6) and one target (n = 5); six targets were mentioned (n = 4) and six (n = 3). N = 14 targets were mentioned (n = 2) and n = 29 were mentioned (n = 1).
3.3.4. Qualitative Data on Goal Areas Indicated in n the Future we Want Rio+20 Outcome Document
The goals mentioned in the Future we want Rio+20 outcome document  cover a wide range of social and sustainability issues. Some of the goals are very explicit in addressing human rights, such as “free humanity from poverty and hunger” and “strive for a world which is just, equitable and inclusive”. It talks about the “importance of freedom, peace and security, respect for all human rights, including the right to development and the right to an adequate standard of living, including the right to food, the rule of law, gender equality and women’s empowerment and the overall commitment to just and democratic societies for development”. In the document, defining features for the green economy include eliminating poverty while enhancing sustainable development. Many of the goals are addressing developing a more sustainable way of living including promoting sustainable patterns of consumption and production, discussing the security of natural resources, the development of more opportunities to work, be educated and be a productive member of society, and the reduction of all inequities which have created barriers for the poor. One example of the document’s description of sustainable development as a goal: “sustainable development must be inclusive and people-centered, benefiting and involving all people”. The document also discusses the need for improved methods of measuring sustainable development in addition to GDP. Throughout the document, there is focus on employment, education, and enhancing productivity in a sustainable way. The future we want, the Rio+20 outcome document,  stated explicitly: “accelerate the achievement of the internationally agreed development goals, including the Millennium Development Goals (MDGs) by 2015.” The Rio+20 outcome document  sees the MDGs as one tool that can be used to achieve sustainable development. According to the document, the MDGs have a focus on particular development improvements, which contribute to the greater sustainable development actions being taken by the United Nations and for national priority setting and for mobilization of stakeholders towards common goals. The document also states that the SD goals should not compromise achieving the MDGs. According to the Rio+20 outcome document  the SGDs should be clear and simple, and directly transferable to meaningful action for all countries so that nations are inspired to act and are able to act meaningfully within their own means. The goals should be driven based on the MDGs. According to Rio+20 outcome document  the SGDs should be clear and simple, and directly transferable to meaningful action for all countries so that nations are inspired to act and are able to act meaningfully within their own means. The goals should be driven based on the MDGs. The document also acknowledges the necessity of measures of sustainable development, which are universal, unified, and grounded in scientific knowledge. As well, bearing in mind variations amongst different Nations capabilities to develop, there is a need for specific aims in order to measure progress towards achieving the SDGs. Also, specific aims are seen as needed in order to measure progress towards achieving the SDGs. Furthermore, providing developing countries with technology and technological abilities is acknowledged by the Rio+20 outcome document  as useful for contributing to development. The document refers to the Johannesburg Plan of Implementation and its discussion of supporting and financially assisting the creation and use of technology, which will contribute to sustainable development. And finally, the Rio+20 outcome document  states that sustainable development should become a conventional aspect of all sectors of the economy, society, and the environment.
Section 4 is organized to mirror the topic order of Section 3 first discussing the data around stakeholders then the issue of attitude and finally the issue of goals, themes and action items evident in the discourses.
4.1.1. Visibility of Disabled People
Our study provides quantitative and qualitative evidence for the lack of visibility of disabled people and their topics within many SD discourses. Our results show that disabled people are NOT a topic which academics working on SD topics pursue for understanding, nor do they analyze the relationship between disabled people and social sustainability, sustainable consumption or Rio+20. This finding is not surprising. Visibility is one main generic demand disabled people and disability scholars voice for nearly every discourse. The phrase “nothing about us without us” is used over and over to voice the sentiment that disabled people do not feel visible in policy and many other discourses . Participants of the discussion forum disability and the Post-2015 development goal agenda  voiced extensively their discontent of being invisible in the development arena and their demand for a change of this reality. This finding is also not surprising as disabled people are not part of many of the discourses that make up the targets and goals of MDG and SD. Disabled people are not part of the energy discourse and are rarely visible in the climate change discourse  or the education for sustainable development discourse . Disabled people are also invisible in many water related discourses including sanitation and hygiene . None of the World Water Reports (a collaboration between various UN agencies) cover disabled people . As to the water discourse, the invisibility could be linked to certain ability expectations and utilities one expects stakeholders to have . Another reason could be linked to how disabled people are perceived. Indeed participants of the discussion forum disability and the Post-2015 development goal agenda  highlighted that the stereotypical understanding of disabled people within a medical framework precludes them from being part of certain discourses as the focus towards them is about preventing “disability” as in ill health not about decreasing their low social health. Indeed if one searches for the term disability within the World Water reports one only finds medical references, including terms such as disability adjusted life years and terms that look at disability as something to be prevented .
However, although this finding is not surprising we posit that there are no practical reasons why disabled people could not be part of SD discourses. Numerous recommendations are in existence that highlight what should be done in general to increase the inclusion of people with disabilities. To highlight one, the World Report on Disability  published in June 2011, gave the following recommendations which we submit could be applied to all the SD discourses covered in this study.
Recommendation 1: Enable access to all mainstream policies, systems and services
Recommendation 2: Invest in specific programs and services for people with disabilities
Recommendation 3: Adopt a national disability strategy and plan of action
Recommendation 4: Involve people with disabilities
Recommendation 5: Improve human resource capacity
Recommendation 6: Provide adequate funding and improve affordability
Recommendation 7: Increase public awareness and understanding of disability
Recommendation 8: Improve disability data collection
Recommendation 9: Strengthen and support research on disability.
Indeed these recommendations fit with the 2011 United Nations report Disability and the Millennium Development Goals: A Review of the MDG Process and Strategies for Inclusion of Disability Issues in Millennium Development Goal Efforts  and the latest Secretary General report, Keeping the Promise: Realizing MDGs for Persons with Disabilities Towards 2015 and Beyond .
Furthermore the participants of the discussion forum disability and the Post-2015 development goal agenda  voiced many ideas as to what worked and what prevents the improvement of the development agenda for disabled people (Table 3). We posit that the problem is not one of lack of knowledge of what should and could be done. Many participants of the discussion forum disability and the Post-2015 development goal agenda  stated the problem is a lack of political and societal will to better the situation of people with disabilities and to implement existing legal documents such as the UN Convention on the rights of persons with disabilities .
One of the recommendations of the latest Secretary General report, Keeping the Promise: Realizing MDGs for Persons with Disabilities Towards 2015 and Beyond  was to include disabled people in the implementation, monitoring and evaluation of MDG goals. We posit a participatory reality has to be achieved where disabled people are involved in the development, implementation, monitoring and evaluation of SD goals and the Post-2015 goals.
Many strategies exist for achieving participatory realities. For example, within the design field participatory design processes are employed [39,40] where co-designing of products are explored as possible avenue to perform participatory design . Participatory action research is developed to generate research that is informed from the start by non-academics [42,43]. Participatory policy development is employed in various SD related discourses [44,45]. It is just not often applied to increase the inclusion of disabled people. The lessons learned within other discourses around participatory policy development should be applicable to disable people and SD discourses.
We posit that the invisibility often exists because certain topics are simply not associated as being topics of concerns to disabled people. This is especially true on a local level. Many small scale initiatives often do not think about disabled people when they start, because the members were never exposed to disabled people who point out how the topic impacts them. Furthermore, even if a group would look for input from disabled people they might not get useful answers. If we look at all the issues disabled people face its evident that many basic issues such as employment and education or access to transportation still are far from achieved by disabled people. This makes it hard for many disabled people to formulate their opinions and voice their concerns especially on new topics. Indeed the participants of the discussion forum disability and the Post-2015 development goal agenda  stated clearly that capacity building of disabled people is also needed so they could hold their own in other discourses when they want to voice their opinions. We posit that capacity building of disabled people should be a main focus of the education part of various SD fields .
4.1.2. Role of Academics
Finally, we would like to draw the attention to the triangle of role of academics in SD, academics and their relationship to disabled people and disabled people being involved in academic and other SD discourses. Academics are mentioned in all SD discourses however we want to engage with what participants of the discussion forum disability and the Post-2015 development goal agenda  felt academics and its institutions should do related to disabled people. As a disability studies scholar, one has to think about who one serves and how . The few quotes used in Section 3.1.4 highlight the view of the participants of the discussion forum disability and the Post-2015 development goal agenda  on the role of academics and academic institutions. They can be summed up to reflect that academics have the duty to perform participatory action research that ensures relevance of the research for disabled people. It is expected that research performed fills the gaps identified regarding data and evidence and that it contributes to decreasing barriers of all type disabled people experience. It is also expected that researchers perform outreach and be instrumental in decreasing the negative perception of disabled people and in decreasing barriers. Moreover, it also is expected that the material of the research reaches disabled people. These expectations pose numerous problems for academics including disability studies scholars (for a discussion around problems disability studies scholars which is linked to many of the here recorded expectations see ).
4.1.3. Challenges for Academia
We posit that the expectations of academia exhibited by participants of the discussion forum disability and the Post-2015 development goal agenda  pose challenges to the academic system especially given our findings reported here that the academic coverage of SD is under investigating disabled people and the reality that a disability studies angle is still vastly under-represented in academia in general  and where the key analytical lens used within disability studies (ableism) is not broadly used within other academic fields . It is stated elsewhere  that ableism is a useful angle for the education for sustainable development discourse and we submit an ableism lens is useful for all SD discourses covered in this paper. The highlighted expectations also pose challenges for academia given the low level of disabled people within academia and the problematic sentiment toward disabled students  and to the output academics generate (open access or not or both; academic language or lay language or both) . To be more concrete the expectations pose challenges for academics involved in SD discourses and academic degrees covering SD topics to include a disability studies lens within their programs, to educate their students on the disability angle of the topic, looking at disability beyond the medical label and to find ways to build capacity of disabled people to be involved in SD discourses. The suggestions also pose challenges to funders and their priorities of academic funding in general and in regards to disabled people (social or medical nature of question investigated) as well as to what governments see as important to support within academic institutions.
4.1.4. Need for Capacity Building of Disabled People
Finally the vision poses challenges for disabled people because if participatory action research is to be the norm that means there have to be disabled people who want to be part of it, either as people willing to give their opinion or people who want to be involved in research projects. The question is which research questions disabled people do feel competent to be involved in. Especially if one looks at emerging issues of relevance to disabled people, do enough disabled people exist to answer emerging research questions? We posit that capacity building on emerging topics of relevance to disabled people is needed beside the increase of knowledge of disabled people in general. This has to happen through the use of academic institutions but it also has to happen through means developed outside of academia through informal learning, learning by doing and life-long learning. This entails the need for NGOs to be involved to provide some form of capacity building of disabled people. We submit the use of knowledge brokers  could be expanded who would provide disability NGOs with knowledge needed to train their staff and board members and to increase capacity of their membership to be involved in SD discourses especially on local levels. Indeed what is needed is a strategy that allows disabled people to constantly build their knowledge on topics in order to be able to influence as acknowledged “experts” a given discourse a difficult tasks acknowledged by others .
If we look at the stakeholder visibility numbers outside of the disability studies lens one can question also other invisibilities such as the invisibility of indigenous people and others who are very visible. However, this goes beyond the scope of this article but the authors hope that others use the data to look at it through other lenses.
4.2. Attitude toward Disabled People
Problems related to the imagery of disabled people is not a new one but is seen for a long time a pervasive issue [35,48,49] whether on the one hand the tragedy imagery the participants of the discussion forum disability and the Post-2015 development goal agenda  questioned a lot or the “supercrip” image where disabled people are portrait as heroically overcoming “their limitation” [50,51,52,53,54,55,56]. These imageries are detrimental to disabled people taking part in SD discourses as “normal” citizens indeed these imageries were seen as one cause of the lack of political and societal will to increase the social health of disabled people by the participants of the discussion forum disability and the Post-2015 development goal agenda . We posit exclusionary language has to be abolished so that disabled people are not seen as “special need” anymore which often used to not involve them as special is often not seen as something particular deserving but something that requires additional actions and allows for other-ism to take hold.
4.3. Goals, Themes and Action Issues Evident in the Discourses Covered
In this section, we discuss how the goals and actions identified in Section 3.3. are linked to and influenced by disabled people or not and how they and the discussion around them could impact disabled people for example in their endeavor to participate in SD and Post-2015 development discourses and their ability to increase their quality of life.
4.3.1. Comparison of Goals and Action Items Mentioned in the Disability and Non-Disability Related Sources
The themes, goals, and action items may be classified into three categories (Table 2 and Table 3), may be classified into three categories of correlations; the same theme was present in the disabled and non-disability related sources, a theme was only present in the disability source and a theme was only present in the non-disability sources.
There were many challenges voiced in the disability consultation that are also seen as action items for SD/MDG/Post-2015 development goals such as education, health, poverty/income, employment, infrastructure, transportation, water, sanitation, food and basic needs. This makes it paramount that disabled people be part of the discourses so they can ensure that remedies developed would also be of use to them.
There were many issues mentioned as targets in the discussion forum disability and the Post-2015 development goal agenda  that did not show up in the other sources. This is an indicator of a lack of diffusion of issues faced by disabled people into other discourses.
Finally certain terms such as social sustainability and sustainable consumption were not mentioned once in the discussion forum disability and the Post-2015 development goal agenda . We submit this is also problematic, suggesting a total disconnect between the discourses and disabled people, not only from the SD discourse end as covered before but also from the end of disabled people not being familiar with the social sustainability and sustainable consumption discourses and the impact they have on disabled people. In this case, disabled people do not seem to even know the terms enough to identify the lack of visibility in these discourses as a problem.
Furthermore certain issues seen as action items in need of being fixed in the SD discourses were not mentioned in the disability consultation, such as energy insecurity and biodiversity.
That biodiversity was not mentioned might be understandable as the biodiversity discourse is about “non-human” biological structures such as animals and plants but not about human biological diversity. However we posit it being a problem as human biological diversity is an area of engagement of disabled people for example in their discourse of questioning the medical model of disability and they should link it to the term biodiversity. The lack of mentioning of energy as an issue of concern is surprising and troubling given that many of the adaptation solutions for disabled people need energy whether fuel (special transportation of disabled people) or electricity (e.g., buttons to doors, or batteries for electric wheelchairs) and that in general disabled people have higher than average energy needs . This lack of highlighting certain areas of problems and the lack of mentioning key SD discourse terms suggests a need for drastic capacity building increase among disabled people. We posit there has to be a greater integration and cross-fertilization between the disability and non-disability development discourses.
4.3.2. Disability as a Cross-Cutting Theme
The topics for actions mentioned in the social sustainability, sustainable consumption, Rio+20 outcome document and the Post-2015 development goal proposals nearly all impact disabled people. For example, how we deal with topics such as sustainable consumption of food and food security impacts disabled people greatly. Indeed food was mentioned (n = 267) in the discussion forum of disability and the Post-2015 development goal agenda. To give one quote:
“In a time of insecurity for food, water, jobs, and public monies the general social preference toward ‘/us and people like us/versus ‘/others’/becomes more intense. There are more people without visible disability and therefore the‘/without’ disability//group’/has a louder voice in the social struggle for resources. Even in places with comparative wealth there is a remarkable outcry against ‘entitlement’ of people who seek public monies or even civil right legislation for the less numerous ‘/other/’, while ignoring the public monies and legislation that continue to give preference to their own group”.
This quote highlights that food insecurity does not only impact the access of disabled people to food but that it increases the division within society making it even more difficult for disabled people to achieve all kind of other inclusion related goals. The quote highlights similar dynamics for other shortages and insecurities felt by disabled people.
The quote suggests that disabled people might be best served by being a cross-cutting theme in SD discourses to be incorporated into all goals although other options may be possible. The cross-cutting option is supported by the latest United Nations Secretary General report of 26 July 2013 A life of dignity for all: accelerating progress towards the Millennium Development Goals and advancing the United Nations development agenda beyond 2015, which indicates that cross-cutting is seen as the preferred option:
“111. Goals and targets should take into account cross-cutting issues such as gender, disability, age and other factors leading to inequality, human rights, demographics, migration and partnerships”.
This wording suggests that cross cutting should also be employed for youth and indigenous people two other social groups we found underrepresented as stakeholders in our data sources.
Universal design is pushed by the disability community for some time [59,60,61,62,63,64,65,66] as a means to fix their “special” status and the “special” status of their problems by designing for more holistic needs in mind so one does not have to do it “special” for “the disabled”. Universal design could be seen as one tool to mainstream disabled people concerns as well as making disability a cross-cutting topic.
4.3.3. The Importance of Evidence
All discourses perceive indicators, measurements, frameworks and standards as important. They are seen to provide means to generate usable evidence. We submit it is essential for disabled people to be part of the development of such indicators, measurements, frameworks and standards as disabled people do not necessarily have the same needs and problems and solutions to a given problem might be different for disabled people. The Rio+20 outcome document The Future We Want  for example acknowledges the necessity of measures of sustainable development which are universal, unified, and grounded in scientific knowledge. We posit for it to be universal it has to be able to and to actually measure the reality of disabled people.
Given that there is an increasing push for evidence based actions, the reasoning that lack of data leads to invisibility as mentioned in the sources we covered seems to be sound because if there is no evidence, it cannot be discussed; to take the example of water and sanitation various datasets exist as to GDP lost and employment lost due to lack of access to clean water and sanitation but these datasets do not indicate disabled people and as such one cannot point for example the finger at the magnitude of the problem for disabled people . Lack of data is a well-known problem which is flagged as an issue to be solved in various MDG related documents and in the WHO World report on disability . However, so far no cohesive strategy has been implemented to generate the data needed in a consistent and methodological accepted way. One problem with data generation is that no consistent use of the term disability is evident meaning that often different groups of people are covered under the term disability. Also not every person with a disability is encountering the same problem or needs the same solution. Someone with arthritis is differently situated than a wheelchair user, a blind or deaf person, or a person with autism or Down-Syndrome. Furthermore, data reported under the header disability often does not report data based on the severity of the disability which is problematic as people with less “severe” disabilities have less problems such as obtaining employment than people with more severe disabilities . Given the importance of evidence we posit that more evidence based data has to be produced related to disabled people and that this data has to be stratified for different disabilities based on severity with a clear indication what severity scales are used (for discussion on severity scale see for example ) with the mentioning of examples of disabilities for better understanding by the public as to which disabilities might fall into which severity category. So far, there is no global standard on severity scales or even whether to use them. This makes it very hard to compare disability data generated by different sources.
We posit having the indicators, measurements, frameworks and standards set up in such a way that they are able to capture the reality of socially disadvantaged groups has another benefit besides just generating data that is missing so far. A sustainable society is part of the SD discourse and as such, we posit one has to be able to judge social impacts of ideas put forward in SD discourses. Performing social impact assessment (SIA) fits with the original Brundtland report goals around needs mentioned in the introduction. SIA is an area that developed after the appearance of the concept of environmental impact assessment . SIA are performed increasingly, the World Bank has a guide for Poverty and social impact assessment (see ). The Interorganizational Committee on Guidelines and Principles for Social Impact Assessment (IOCGP) generated, in 1992, a set of guidelines of how to perform Social Impact Assessment . We posit that many of indicators, measurements, frameworks and standards asked for in the SD discourses can be used for SIA in principle. However, we posit that many have to be tweaked or operationalized to include the reality of socially disadvantaged groups in order to be able to really measure the social impact. Indeed Van Der Horst and Vermeylen concluded that SIA’s following the IOCGP guidelines work best in settings that are inclusive of all “normally marginalized groups such as the poor, women and children, people with disabilities, indigenous people or other minorities” .
Our study highlights that disabled people are still underrepresented in SD discourses and that disabled people have clear ideas as to what the problems are and what the solutions should be. We posit there is an urgent need for more visibility of disabled people; better imagery of disabled people; cross fertilization between the disability and non-disability SD and Post-2015 development discourses; involvement of disabled people in the design of SD and Post-2015 development indictors, measures and frameworks and generation of disability data linked to SD and Post-2015 development topics to inform SD and Post-2015 development policies. Our data suggest that there is a need for academia to be much more relevant to disabled people and that there is a need for capacity building of disabled people through formal and informal education in order for them to be able to contribute in a broader way to SD discourses.
We posit that our findings are also of use to other identified underrepresented social groups such as youth and indigenous people. They can for example use the themes of the different discourses we outlined and compare them with what themes show up in SD discourses among underrepresented social groups such as youth and indigenous people.
Some high level United Nations documents such as the latest Secretary General report of 26 July 2013 A life of dignity for all: accelerating progress towards the Millennium Development Goals and advancing the United Nations development agenda beyond 2015  mention disabled people and give recommendations as to what has to change (which cover part of the concerns disabled people mentioned in our sources) in the MDG and SD discourses. However, this has not led yet to action in many instances. Our study adds quantitative and qualitative data to the pool of knowledge of what should and could be done and what is seen in need of fixing. We posit our data is of use to the SD and Post-2015 development community in general and SD and Post-2015 development implementation community in particular.
Our study especially gives voice to disabled people’s views evident in the online consultation for a disability inclusive development agenda towards 2015 and beyond  organized by key international disability organizations as one approach to increase the visibility of the views of disabled people in the Post-2015 development agenda discourse. We posit that the knowledge of what should be done exists and it is an issue of implementation and monitoring of the numerous recommendations of various UN and other documents and of making use of the knowledge of disabled people.
However, there are challenges to overcome to achieve the goal of establishing disability as a cross-cutting theme and increasing the visibility of disabled people and their use as experts. Numerous challenges were identified within the disability inclusive development agenda towards 2015 and beyond , such as attitudes towards disabled people and their needs, stigma related to disabled people, lack of political will, and a lack of awareness covering the lack of awareness of the needs of disabled people, their rights, the non-medical models of disability, existing laws related to disabled people were mentioned and lack of capacity of disabled people. We submit these are all areas in need of action from academics and academia, governments, funding agencies, policy makers and NGOs if the goal of inclusion of disabled people in SD and Post-2015 development is to become a reality.
We would like to express our gratitude that the organizers of the online consultation for a disability inclusive development agenda towards 2015 & beyond that took place 8 March–5 April 2013 allowed us to analyze the data and use it in our study. Theresa Rybchinski was in part supported by a BHSc student fellowship, Faculty of Medicine, University of Calgary.
Conflicts of Interest
The authors declare no conflict of interest.
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