REDI—Red por los Derechos de las Personas con Discapacidad—is a radical disability-rights organization based in Argentina. Until the economic crisis of 2001, REDI focused on lobbying for increased legislative protection of the disabled and enforcement of extant laws in this regard. But the crash suggested that the difficulties facing disabled populations seeking to access to employment and education are rooted in the dynamics of capitalism, which condemn large swaths of the populace to systematic unemployment. Thus, REDI adopted a practical perspective that frames disability and chronic unemployment as a class issue, with the goal of critiquing two common misconceptions: first, that disability is a medical issue to be resolved individually and, second, that those facing chronic unemployment and organizing to overcome it are fighting a different fight from disabled people. Under the slogan "fight for the right to be exploited"—believing that disabled populations, when we include people injured on the job, comprise what Marx labeled the lowest stratum of the industrial reserve army—REDI joined the piqueteros and aimed to increase consciousness that both groups could benefit from an organizational principle that saw their struggles as one. Especially since the global economic crisis of 2008, which has been especially protracted in Argentina, REDI has remained devoted to the notion that the struggle for employment is one moment in a struggle for economic and political autonomy that contests the very foundations of the capitalist social system. This interview with a member of the Steering Committee, Facundo Chavez Penillas, describes REDI's history, organizing principles and campaigns, and its class analysis of disability. Other topics include the relationship between disability-rights activism and the so-called "Pink Tide" in Latin America, as well as the Argentine experience of bridging disability-rights activism and labor activism.
The Argentine disability rights organization REDI (Red por los Derechos de las Personas con Discapacidad) has been the fulcrum in the convergence of activism among the unemployed and persons with disability. With Argentina's economic crisis in 2001, it became clear that the chronically unemployed and underemployed, whose ranks were swelling, overlapped greatly with people with disabilities. What is more, highly exploitive and dangerous work conditions often lead to disability, which in turn leads to chronic joblessness. Uniting these groups is not only a seemingly shared fate but also a class relation: their membership in the reserve army of labor, their structural location on the wrong side of the ideology of "productivity," and their exploitation by multiple profiteering enterprises, like the health industry, without the exploitation of their labor-power. As such, the individualizing, pathologizing medical model of disability was untenable. If these analyses had been clear to Argentine activists and scholars before 2001, the crisis crystallized the importance of political organizing that would take the social model of disability as its object; moreover, the crisis presented new opportunities for organizing and allowed and encouraged activists to forge new strategic alliances.
In this interview, conducted in Spring 2010, Facundo Chávez Penillas, a wheelchair user, discusses his experience as a disability rights lawyer and activist in Argentina. Facundo is Vice President of RIADIS (Red Latinoamericana de Organizaciónes No Gubernamentales de Personas con Discapacidad y sus Familias; Latin American Network of Nongovernmental Organizations for Persons with Disability and their Families) and a member of the Steering Committee of REDI. Facundo practiced business law for 5 years in a top-tier firm in Buenos Aires, which was the only employment opportunity he found after completing his education. After becoming the firm's pro bono coordinator, in 2009 he became the disability rights lawyer at the city of Buenos Aires Ombudsman's Office. Facundo lectures at many disability conferences in Argentina and abroad and works closely with other social rights organizations. This interview was conducted and edited by Stuart Schrader.
SS What experiences led you to become involved with activism?
FP I have been involved in political activism since high school, mainly away from traditional parties. I was always well regarded among my peers, had friends and girlfriends, and was not concerned with acceptance as a productive person. I remember answering a question during an English test with a teacher from Ireland who asked, "Is there much discrimination in Argentina?" I answered, "Yes, xenophobia and class racism." I did not see myself as one who experienced discrimination. But in 2000, as I was finishing my studies at university and I started to look for a job, I saw discrimination face-to-face. I had never thought it would reach me, but it did and it was the most painful experience of my life. After that, I started work with social organizations promoting employment, which put me in contact with Central de los Trabajadores Argentinos (CTA), one of two Argentine workers' federations.
At CTA I began to work with two well-known figures in the disability community, through whom I encountered a network of people working on disability issues. I felt comfortable in this environment and rapidly I came to understand that my experience and this struggle was one that many people shared. Yet after a year in CTA I began to notice that my proposals were not always heard. I was proposing lawsuits against public- and private-sector employers to enforce employment quotas, but instead I was directed to engage in promotion and consciousness-raising on this issue. I, like many others, needed work immediately, and I did not want to wait for a cultural change before I could get a job. Under these circumstances, I began to look for new allies.
By coincidence, my physician told me that he had been in contact with Eduardo Joly, a sociologist, long-time activist, and wheelchair user, who had ideas similar to mine. When we met and I shared my ideas with him; he was very enthusiastic and introduced me to what we think of as the social model of disability. This idea was radical to me. Until that point, it was very frustrating to carry my disability as part of me, without any chance to do anything about it. The feeling increased when I became a lawyer because, unlike a doctor, for example, I could not do anything about it professionally. The social model of disability relieved me of a terrible burden: it was not me who had to change to fit into the world—it was the world that had to change to include me.
The social model of disability gave me the opportunity to do something about it, especially considering that there was so much to be done. At this point, I joined Red por los Derechos de las Personas de Discapacidad (REDI) and became a full-fledged disability-rights activist.
SS I'm interested in your thoughts on the comparison between existing left/radical organizations and REDI. When you became involved in REDI, what did you feel its perspective offered that traditional modes of left organizing in Argentina did not?
FP REDI came into existence to respond to the needs of activists coalescing into the disability movement after the dictatorship. It is not possible to understand REDI outside the remnants of activism of the 1970s that were reborn after the end of the dictatorship. REDI differs from other left organizations due to its specific focus on disability, but it is similar in that in its perspective poverty and exclusion are the political results of the economics of capitalism. REDI is the only organization of persons with disability of which I know that has this focus.
Even if a person with disability participates in a political movement (right or left), it is not possible to escape the general preconception that disability means being nonproductive. There are many examples of social organizations that include disability issues in their objectives but nonetheless remain within the medical model. In some cases, left-wing organizations, even with the best intentions of providing services to persons with disability to improve their living conditions, exploit them by sustaining the notion that persons with disability are objects of the medical industry instead of subjects with rights.
In contrast, REDI does not provide services to persons with disability. It is an organization that demands freedom from that model and works for the right of persons with disability to have an equal political voice within other left-wing organizations and movements.
SS Eduardo Joly captures REDI's focus as a mobilization for "the right to be exploited." 1 Can you explain what this idea entails and how it enables disability-rights activism to broaden its constituency?
FP We persons with disability have historically been considered nonproductive. This is not a capricious concept. With capitalism developed normalcy as the "normal productive person." Under this ideology, "normal" means the most productive, the most efficient, the most exploitable. We, however, are not the most exploitable as laborers.
The "ideology of normality" says we are to be exploited—but not as workers. 2 We are to be exploited as objects that provide never-ending profits for the health industry. We are to be forever habilitated, rehabilitated, "healed," "protected" by the health industry, "protected" by the "special" education industry, and "protected" by specially designed working environments. We have no right to run risks. The health industry is like our big brother; we are always carefully controlled, as it provides endless service to preclude us from living independent lives. We have no right to get to schools, to jobs, to political arenas, to universities. Our right to be included in programs includes only those for entertainment. Even our right to work is limited to amusing, preprogrammed environments.
When working policies for persons with disability are applied in Argentina, they always involve unarticulated capacity-building strategies. We learn information technology, English, French, or Russian. We learn how to make baskets, how be call-center employees. But all of this learning and these tools are not directed toward acquiring jobs, as if the main problem with our lack of employment were us.
It seems that the best solution to the unemployment of persons with disability is to "fix" us instead of fixing the social construction of us as abnormal. Once again a return to the medical model, once again an alternative way to exploit us as objects. Who wins with this strategy? The winners are the training programs, usually controlled by nongovernmental organizations (NGOs) "for" persons with disabilities, financed by the state, which continues to construct big brothers to help us.
The same process occurs at school: special schools in which 90% of students could be enrolled at regular schools. But a student with disabilities in a special school is monetarily worth four times what a student with disabilities in a regular school is worth, due to the state's funding program. In both cases, students are controlled by the health system, which is controlled by unions. In both cases, we are exploited as objects. Unions that control the health system quite reasonably do not decline to be financed by the state to provide services on its behalf at this high rate. But the worst part is that they often do not provide the services but still collect payments from the state as if they did provide them.
Therefore, the right to be exploited is the right to be considered persons instead of objects. The right to be exploited—as workers—is the only way capitalism can recognize our existence, our human dignity. But this analysis leads only to one question: does a person with disability have any chance of achieving full personhood in the capitalist system? Eduardo Joly says that if it is not impossible, it is very unlikely under the present circumstances. To change the concept of the nonproductive person, it is necessary to change the relationship between those who demand work and those who provide it. As long as the economic arrangement of normalcy is the person who produces the most, persons with disability will never reach that minimum standard to be considered human.
Our allies in this fight are the poor, who are as abnormal to the economy as we are, in a similar way. They do not provide the most profitable opportunities, and to prepare them is to invest much more money than it takes to prepare the middle class. The poor do not access private education, where "normal" persons attend. They do not provide "information" in an information-based economy, and through informalization of the economy, they are little by little required less and less. Perhaps that is why persons with disabilities are becoming more and more poor and the poor are becoming more and more disabled by capitalism.
Social movements are the only hope. To change the ideology of normality a strong force will be necessary. REDI's strategy is to continue to provide a voice to persons with disability in social movements.
SS You highlight the importance of seeing REDI's activism in light of political movements that were rekindled with the end of the dictatorship. How did this activism transform from Argentina's period of neoliberalization under President Menem to the economic crisis of 2001/2002? How did the crisis change REDI's organizing strategies and what opportunities for building alliances in social movements emerged in this period?
FP From an activist perspective, the neoliberal period, under President Menem, was important for the consolidation of movements in different regions of Argentina: piqueteros (Patagonia and the northwest), left-wing teachers (Neuquén), and the human rights movement (La Pampa). In this period, center-left parties began to form coalitions, which was a tendency seen across Latin America. The result was the well-known rise of center-left and left governments across the continent. Nonetheless, these center-left governments did not focus on the economic gap between rich and poor people.
The crisis of 2001 was the culmination of neoliberal policies. All the left-wing movements that had been growing came into action then, demanding new ways of conducting politics. REDI decided to "get included in other fights, to fight for our inclusion." We joined the piqueteros and asambleas barriales (neighborhood assemblies) and were involved in imagining different political strategies. This work provided REDI with new and different allies. The period of 2001-2002 was unstable, and most of the social movements faced difficult conflicts. REDI was not prepared at that point to expand. We feared losing control of our focus, which was already so underrepresented. In order to continue to work with other organizations, we realized it was necessary to build our members' capacities. By strengthening ourselves within alliances in the human rights movement, we were able to position REDI as the voice of the conjoined human rights and disability movement. REDI reached that position in 2004.
We have always had a labor-focused strategy, but after much advocacy in the political arena without much results from politicians, in alliance with Asociación Civil para la Igualdad y la Justicia (ACIJ), we initiated the labor-judicial strategy in the hope of adding to the fight for unemployed persons with disability. This strategy was focused on access to justice to provide people with disability the right to demand their rights in the judicial arena. As part of this strategy, REDI highlighted Article 13 of the United Nations Convention on the Rights of Persons With Disabilities (CRPD), which has two points: to ensure that persons with disabilities have an equal opportunity to participate directly and indirectly in all legal proceedings, at all stages; and to ensure that judicial staff, prison staff, and police are trained to maintain effective access for persons with disabilities.
After a long process, this work has begun to pay off. Nowadays, the court is a main focus and resource of disability-rights activism in Argentina. Furthermore, REDI is well-positioned as a resource and reference on the rights of persons with disability. Our network is greatly expanding. We work with human rights NGOs, such as ACIJ, Centro de Estudios Legales y Sociales, and Asociación por los Derechos Civiles, and with other NGOs, such as Madres de Plaza de Mayo, Abuelas de Plaza de Mayo, Servicio Paz y Justicia, Equipo Latinoamericano de Justicia y Género, and Médicos del Mundo. And recently REDI restarted a strategy to integrate with the struggles of other grassroots movements, including those organizing around sexuality. We have also rejoined with social movements growing out of the struggle against neoliberalization and the crisis—like Organización Barrial Túpac Amaru, a CTA-organized federation of neighborhood assemblies begun in Jujuy Province—now on a more a solid basis, with new possibilities.
SS What are some of the specific campaigns and targets of REDI's organizing? What have been the challenges and successes REDI has experienced in its organizing and in its campaigns?
FP REDI has almost always organized its actions with employment as its main target. According to Argentine law, the primary responsibility for employment is the government's (national and local in the city of Buenos Aires), which must comply with an employment quota. Consequently, we have always worked on transportation to go to work, education to reach the capacity to work, accessibility to working facilities, access to justice to demand the compliance with quotas, and so on. In this way, we focus our efforts on different aspects of the primary issue of working status.
I believe the main challenges have always been connected with breaking the idea of capitalist thinking that joins disability with non-productivity and social exclusion. This ideology, currently in force, proposes to confine us to be forever children, forever objects of exploitation by the medical industry, forever non-social subjects. In order to break this logic, REDI understands that a movement must be built; to build a movement autonomy must be achieved. To achieve autonomy, we must address all aspects of life of persons with disability.
In association with other NGOs we worked on a national program called "Ciudades Accesibles" to promote physical accessibility. We organized small groups for a seminar on accessibility. Once organized with that goal in mind, REDI promoted other activities to follow up and to use this work as a basis for identifying and joining with militants all over the country.
Currently, along with the mental health good practices network, we are working on a program to promote independent living, working with social NGOs from Jujuy, Salta, and Tucumán provinces, the Organización Barrial Túpac Amaru, and governments in those northwest provinces. Furthermore, with three disabled-persons federations we are working on the necessary legal reform established by the CRPD, on legal capacity, access to justice, autonomy, labor laws, communications accessibility. This work is in its early stages.
It is difficult to enunciate failures and successes in these fields. All of the campaigns are successful to the extent of their formal goals. Perhaps failure could be identified by the fact that the disability movement is still divided into several parts, and it is not integrated into other social movements. But we recognize that this is a long-term process.
SS How does Argentina's record on disability rights compare to that of other Latin American countries?
FP Based on REDI's day-to-day experience, Latin American countries have parallel problems. Politically, the medical model still is in force. Power is concentrated in specific government organizations (usually called Consejo Nacional para las Personas con Discapacidad), which rarely allows participation by NGOs organizing around the social model of disability.
Disability-rights NGOs have not developed standards to follow up on legislative compliance in Argentina. We are working to start solving this problem in Argentina in the next year, with the cooperation of Disability Rights Promotion International, which does this work in other countries. Similar situations are registered all over Latin America. None of the Latin American countries has established efficient mechanisms to implement, monitor, and follow up public policies related to disability. Because the disability movement has not professionalized in a way that would enable it to do this monitoring work on its own, little political power for redress of noncompliance has been gained so far. REDI has proposed changing this situation and is working to address its resources to this challenge.
Overall, Argentina is in no better condition than other countries, with the exception of Buenos Aires in certain respects. One advantage in Argentina is that the legislative foundations and the welfare-state policies on disability allow open lines of work without open opposition, at least in political rhetoric. This lack of opposition allows the construction of certain strategies that would be much more difficult to pursue in more neoliberal countries like Colombia, Peru, Mexico, Ecuador, or Chile (to name a few). On the other hand, disability-rights NGOs are forced to work harder to make evident the fact that notwithstanding rhetoric, the reality on the ground remains unjust. Depending on the area, disability rights are enforced to varying degrees. The city of Buenos Aires has better access to multiple health, legal, and political services, which allows more participation. Buenos Aires leads the disability movement for that reason. Rural areas or poor areas have no access to any of these, and consequently people living there have little chance to claim their rights and enforcement of the law is lower. This unevenness is common in all Latin American countries.
SS What is the relationship between REDI and Red de Organizaciónes No Gubernamentales de Personas con Discapacidad y sus Familias (RIADIS)? How do these organizations work across borders on the social model of disability without joining the NGO-led medical model?
FP REDI is a member of RIADIS, and currently we are part of the executive committee of the board. I am the vice president. RIADIS, in turn, is a member of the International Disability Alliance (IDA) and the Global Partnership for Disability and Development (GPDD).
RIADIS guides its members to interact with human rights NGOs, social movements, unions, etc., to execute their policies for mainstreaming disability. RIADIS is, to my knowledge, one of the few regional NGOs to do this work. Other NGOs restrict themselves to disability claims without attempting to work with other activists. In addition, RIADIS engages in political work at the Organization of American States and United Nations, promoting the consideration of Latin American issues at those international organizations. At the same time, RIADIS works within IDA and GPDD to work through the International Labor Organization and World Health Organization to demedicalize disability. Advocating the social model of disability at the international level is fundamental to discouraging funding practices on the medical model at the levels of government-to-government and NGO-to-NGO cooperation.
At this moment, the most receptive international NGO is the United Nations. The Office of the High Commissioner for Human Rights has done interesting work, and it is very important to join an international strategy with local strategies and to seek political support if needed. The only way to obtain information on strategies and where political support is useful is at international meetings.