Reivindicative occupational practices of activist with disabilities

Práticas ocupacionais reivindicativas de ativistas com deficiência

Abstract

Introduction

The occupational praxis of activists with disabilities in the Latin America has presented actions of revindication from historically marginalised territories.

Objective

To explore and describe strategies used by Chilean activist with disabilities.

Method

Qualitative design via three research techniques: a) 11 in-depth interviews; b) six group chat sessions; c) content analysis of eight social networks belonging to collectives of activists with disabilities in Chile.

Results

Activists indicate various occupations for revindication as subjects with rights. These trajectories are exemplified with the following dimensions: 1) Interpellate full social participation: demanding justice and citizenship; 2) Showing defective bodies: public mobilisations; 3) Occupying institutional space by placing: bodies in the system.

Conclusion

Dissident occupational practices intervene and transform the limited comprehension about what human vulnerability and fragility is capable of. This situation is mainly appreciated in the Global South.

Keywords:
Social Activism; Disabled Person; Citizienship; Latin America; Activities of Daily Living

Resumo

Introdução

A práxis ocupacional de ativistas com deficiência na América Latina tem apresentado ações de reivindicação de territórios historicamente marginalizados.

Objetivo

Explorar e descrever as estratégias utilizadas por ativistas chilenos com deficiência.

Método

Desenho qualitativo por meio de três técnicas de pesquisa: a) 11 entrevistas em profundidade; b) seis sessões de chat em grupo; c) análise de conteúdo de oito redes sociais pertencentes a coletivos de ativistas com deficiência no Chile.

Resultados

Os ativistas indicam diversas ocupações para reivindicação como sujeitos de direitos. Essas trajetórias são exemplificadas com as seguintes dimensões: 1) Interpelar a participação social plena: reivindicar justiça e cidadania; 2) Mostrar corpos defeituosos: mobilizações públicas; 3) Ocupar o espaço institucional colocando: os corpos no sistema.

Conclusão

Práticas ocupacionais dissidentes intervêm e transformam a compreensão limitada sobre do que é capaz a vulnerabilidade e fragilidade humana. Esta situação é apreciada principalmente no Sul Global.

Palavras-chave:
Ativismo Social; Pessoas com Deficiência; Cidadania; América Latina; Atividades Cotidianas

Introduction

Critical disability studies (Barton, 1998, 2008; Ferreira, 2011; Palacios, 2008) have systematised the struggles of activists and the social movements of people with disabilities, principally in Western Anglo-Saxon countries. These geopolitical spaces have given rise to various critical and liberating practices about the operation and values of ableist modern colonial society (Pino-Morán & Tiseyra, 2019). Because of this, a series of political agendas have been established for social and cultural transformation. One point reflecting this phenomenon is the approval of the Convention on the Rights of People with Disabilities in 2006 (United Nations, 2006), a cornerstone of the current legal framework.

In Latin America, movements and activists are in formation and politicisation. However, there is little research about the sociopolitical relevance of occupational practices done by people with disabilities (Cea-Madrid, 2018; Montenegro, 2018; Pino-Morán & Rodríguez-Garrido, 2017). In Chile, the rise of disability activism has made it possible to politicise the malaise of everyday life (Hammell, 2020). In spite of this, within the area of occupational therapy, there is little social or critical research about this phenomenon, and its systematisation, visibilisation and investigation are far behind (Pino-Morán & Rodríguez-Garrido, 2017).

In general, social movements and activism, such as the feminist movement, the movement for health or work, have been analyzed from a collective action focus (Touraine, 1990) leaving out the microsociological and occupational components. On this path, occupational therapy has driven the approach to critical (Guajardo Córdoba, 2017), social (Galheigo, 2006) and community dimensions (Pino-Morán, 2014; Zango-Martin, 2017) which promote social transformation (Farias et al., 2019) around daily matters in a double sense, i.e., as a political and as a physical movement (Butler, 2017). Within this focus, we consider it relevant to analyze the collective occupations (Ramugondo & Kronenberg, 2015) of people with disabilities and how these have been able to subvert ableist, colonial, capitalist and heteropatriarchal social oppression (Pino-Morán & Rodríguez-Garrido, 2017; Pino-Morán & Tiseyra, 2019).

This has made it possible for them to be constituted as historical subjects conscious of their peripheral position in the current modern Westernised system, enunciating what Freire (2012) called ‘liberational praxis’, as praxis of reflection and action to transform the world.

The preceding provides evidence of a series of actions, strategies, and power tactics (Foucault, 2009) which people with disabilities living in Chile demonstrate in their daily lives. In this way, collective occupations would involve the interruption of the political and cultural square with conflicts revolving around recognition, visibilisation (Honneth, 1997). Instead, equity in wealth production and distribution, and satisfying the needs comprise the rights of a new citizenry founded on diverse functions.

By this research, we will develop a cartography of people with disabilities in Chile, focusing on the strategies for emancipating bodies constructed by activists, especially those connected to collective occupations. Special attention is also placed on how these strategies are articulated in current virtual and technological environments.

Occupational, Corporal, and Political Movement: An Anti-Ableist Critique

Bodies with disabilities have historically been denied or undervalued in their disposition to action and significant occupations (Hammell & Iwama, 2012); furthermore, the ableist heteropatriarchal gaze has underestimated the transformative potential which these embodiments may suppose (Hammell, 2011).

This outlook has had a varied effect on occupational therapy, dedicating notable efforts to analyzing the individual components of disability (Palacios, 2008), but not paying attention to transformative components in first-person occupational experiences. For this reason, the perspective of agency in occupational analysis (Ema López, 2004) is highlighted. This describes how the so-called ‘disabled bodies’ resist and subvert various expressions of governability (Foucault, 2009) which their occupational lives face (Alve et al., 2020).

In this sense, agency is understood as a process of ‘being-doing’. In keeping with Ema López (2004), the characteristics of agency form part of the bodily framework because:

“They allow us to understand them not as individual property, but as a shared possibility. This involves linking the capacity for action with a relational conception of power; rather than understanding it as a storage capacity, property of a subject-agent” (Ema López, 2004, p. 15).

Agency provides us the possibility to subvert the occupations and discriminations presupposed by precarious lives, to reconquer their right to be recognised (Farias et al., 2019). This critical perspective on occupation proposes agency as a strategy of destabilisation of the mandate over corporality, capacity and heteronormativity (Hammell & Iwama, 2012).

On the same lines, crip theory (McRuer, 2006) resignifies abnormality in a non-pejorative way, as a form of pride and revindication of difference, which Butler (2017) comprehends as agencies incarnated outside the victimizing and charitable perspective of disability.

Similarly, the popular education perspective proposed by Freire (2012) includes agency as social praxis, which occurs in a dialogical corporal process founded in action-reflection wherein oppressed subjects progressively achieve, via their own corporality, the conscientisation of their struggles and oppressions.

Finally, agency as a fundamental component of collective occupations is identified, following the Nietzschean concept (Sánchez-Meca, 2002) of the will to power which clashes against all moral norms which others attempt to force from outside. This arises to conquer the freedom of creation which knows no other form than the obedience which it places upon itself.

Therefore, applying the perspective of agency to the collective occupations of people with disabilities, means transforming their lives as activists and understanding vulnerability from a different angle. While historically, the vulnerability of people with disabilities has been considered from the level of passivity and dependency, the perspective of agency helps us to understand vulnerability from political praxis and resistance (Ema López, 2004).

Agency can be understood as an active action made visible via occupations, which has the particularity of what could be called ‘corporeal movement’ or, as Rodríguez-Giralt (2010) puts it, the manifestation of incarnated activism. This is characterised by “questioning based upon personal and direct experience on determined problems or specific diseases, diagnosis, treatment and the responses of public policies proposed by third parties, institutions or health professionals” (Rodríguez-Giralt, 2010, p. 12).

This incarnated activism extends to all forms of personal and collective action formed by occupational experiences to turn them into an object of political controversy (Ramugondo & Kronenberg, 2015). That is, it is the felt or emotive expression which invades the creation of corporality resulting from a lack of work, economic dependency, family care, paternalism, assistantialism and all the tensions involved in the life project for people with disabilities.

In this way, the occupational agency of people with disabilities is translated into an expression of political action-mobilisation creating the possibility of accessibility for greater freedom and equity. However, creating agency does not arise in a vacuum. For our perspective on agency, it is precisely the incarnated characteristic of what we have discussed which makes it possible to understand agency in material terms, i.e., it arises from the interaction between individual and collective experiences of vulnerability lived by activists given certain social and historical conditions of disability. Definitively, it is the condition of vulnerability which makes the struggles of activists with disabilities. This leads to the importance of recovering and reconstructing their bodily itineraries, as an incarnated memory.

Thus, we understand creating agency in collective occupations as a process of collective will to subversion by people to deploy liberation strategies against ableism, showing the logic underlying the economic, social and gender power relations which maintain the exclusion of people who question the social order of ‘normality’. Moreover, the former can be the birth of “collective agency for enunciation allowing us to release ourselves from our identities, functions and roles and open a space-time where desire may move freely” (Guattari, 2013, p. 11).

Thus, the aim of the study was to explore and describe strategies used by Chilean activist with disabilities.

Methods

Design

This study has a qualitative design, using an interpretive perspective which considers the social meanings from the people participating in the studied phenomenon (Delgado & Gutiérrez, 1999). Grounding ourselves in Denzin & Lincoln (2012).

our understanding is that qualitative research ‘Is a situated activity, placing the observer within the world of life. It consists of a series of interpretive material practices which make the world visible and transform it’.

The research design was open, exploratory and descriptive reach (Verd & Lozares, 2016; Vásquez, 2006), based on a decolonial (Bidaseca et al., 2012) and situated (Haraway, 1991) perspectives. This means that emphasised and privileged discourses arising from the experiences and viewpoints of activists with disabilities living in Chile who participated in this study.

Participants

The participants’ selection criteria were based on qualitative principles: intentional and reasoned (Vásquez, 2006) to allow for gaining knowledge, discover and interpret the phenomenon in depth.

The inclusion criteria were people who: a) presented experience and/or identified themselves with disability as having an acquired or congenital condition; b) actively participated in collectives or critiques of disability at a national level; c) lived in Chile from 2010; d) were willing to talk about their trajectories as activists.

We opted to not limit the participants to diagnostic criteria or classifications within a rehabilitative medical paradigm.

Data collection method

For data gathering techniques, we used three mechanisms:

a) Through snowball sampling, eleven activists with disabilities participated (Table 1) via the strategy of corporeal itineraries, which according to Esteban (2013, p. 58) are defined as “those life processes which are individual but always refer back to a collective, which happen within concrete social structures and within which we give all centrality to subjects’ social actions, with this being understood as corporeal practices”.

Table 1
Participants’ profiles.

Fictitious name	Sex	Age	Link to Disability	Collective action
Julio	M	50	Psychiatry Survivor	Autogestión Libre-Mente
Guillermo	M	33	Low vision	Colectivo Palos de Ciegos
Esteban	M	58	Low vision	Colectivo Palos de Ciegos
José	M	50	Psychiatry Survivor	Corporación voces
Ricardo	M	40	Psychiatry Survivor	AESAM
Hugo	M	45	Psychiatry Survivor	Colectivo Talidomia
Erika	F	40	Blindness / Deafness-Partial.	ODISEX
Karina	F	55	Psychiatry Survivor	COMUNIDIS
Elisabeth	F	34	Generalized Dystonia	Corporación Distonía
Beatriz	F	55	Multiple Amputee	Corporación Bio-Bio
Francisca	F	36	Neurodiversity	Mil Capacidades

• Source: Table of own elaboration.

From this perspective, we studied life trajectories to show inflections, positions, and contradictions which activists with disabilities incarnate. This also let us understand relations between bodies with unknown potentiality, as foreseen by Spinoza (1980).

In-depth interviews were carried out by the first author with 6 men and 5 women, assigning them pseudonyms to protect their identities. The interviews were done between September 2017 and February 2018. 2 to 4 sessions were carried out per person on different occasions to avoid exhaustion of the participants. The physical interview space was arranged by activists according to their availability and time.

b) In the second case, we carried out 6 group conversations (Table 2) where activists with disabilities participated as experts from experience, making oral presentations. The presentations were recorded and transcribed to form a second textual corpus for analysis. These conversations took place between September 2017 and February 2018.

Table 2
Description of group conversations.

Name of the activity	City of Chile	Zone
‘Psychosocial Mental Health’	Viña del Mar	Centre
‘Anti Stigma’	Concepción	South
‘Different Childhoods and Neoliberal Education’	Santiago	Centre
‘Activism and Social Movements’	Santiago	Centre
‘Madhouse Logics’	Santiago	Centre
‘Beyond the Chemical Madhouse’	Santiago	Centre

• Source: Table of own elaboration.

c) Finally, we gathered communications and broadcast material from the social media of activist collectives working for the rights of people with disabilities. Specifically, we analyzed material from Facebook, generating a third textual corpus for analysis. The material extracted consisted of public Facebook posts from May 2017 to May 2018. Data analysis was done via software Atlas ti 8.2.3.

Data analysis

For the three information gathering techniques, we used the content analysis technique ³⁸ semantically oriented. That is, we analyzed all the information produced during the fieldwork phase, using the three textual corpora arising from applying the three aforementioned techniques. We also incorporated an intertextual strategy with a subjective character since every utterance was interpreted as a function of the characteristics of the subject producing the discourse (Bardin, 1986).

Criteria for methodological rigour

We considered the list of questions contained in the Standards for Reporting Qualitative Research (SRQR) (O’Brien et al., 2014). The questionnaire consists of 21 items (Table 3).

Table 3
Standards for Reporting Qualitative Research (SRQR).

N°	Topic	Answers authors
Title and abstract
S1	Title	Yes
S2	Abstract	Yes
Introduction
S3	Problem formulation	Yes. See introduction and background sections.
S4	Purpose of research question	Yes. See introduction section.
Methods
S5	Qualitative approach and research paradigm	Research design was open and abductive, with an exploratory and descriptive reach, adopting a decolonial approach and situated. With a phenomenological perspective.
S6	Researcher characteristic and reflexivity	The authors of this article have a long history of working with critical perspectives. Particularly, two of the authors work directly from critical disability studies.
		The first author (principal researcher) has a long history of working with disability activists.
S7	Context	Yes. See participants’ section.
S8	Sampling strategy	Yes. See participants’ and data collection sections.
S9	Ethical issues pertaining to human subjects	Yes. See ethical considerations section.
S10	Data collection methods	Yes. See data collection section.
S11	Data collection instruments and technologies	Yes. See data collection section.
S12	Units of study	Yes. See tables 1 and 2.
S13	Data processing	Yes. See data analysis section.
S14	Data analysis	Yes. See data analysis section.
S15	Techniques to enhance trustworthiness	Yes. See criteria methodological rigour section.
Results/findings
S16	Synthesis and interpretation	Yes. See results section.
S17	Links to empirical data	By request of the journal.
Discussion
S18	Integration with prior work, implications, transferability, and contribution(s) to the field.	Yes. See discussion and study considerations limits sections.
S19	Limitations	Yes. See study considerations limits section.
Other
S20	Conflicts of interest	Yes. See title page.
S21	Funding	Yes. See title page.

• Source: Table of own elaboration.

Ethical considerations

The participants were informed of the aims and goals of the study, the voluntary nature of their participation and the confidentiality guarantee for their identity, along with the anonymity of data arising from the study.

After this, they received an informed consent form which was read together with the participants to clarify any questions or doubts arising in the moment, before signing the document.

The present project was done within the framework of a thesis dissertation for the Doctorate in Sociology at Universidad Autónoma de Barcelona (first author), following approval by the academic commission of the programme which acted as a regulator and reviewer of the study in bioethical terms. Similarly, for the fieldwork and development of the study, we considered the biosecurity and ethical principles of the Helsinki Declaration (World Medical Association, 1964).

Results

The results obtained in the present study are presented within three analysis dimensions: a) Interpellating full social participation: demanding justice and citizenship; b) Showing defective bodies: public mobilisation; c) Occupying institutional space: placing bodies in the system.

a) Interpellating full social participation: demanding justice and citizenship

Full social participation is one of the main demands of the collective of activists with disabilities in Chile. However, it is also one of the main problems to achieve better living conditions and dignified occupations. One activist comment on the actions which were done to criticise the invisibilisation of their participation and the need to have a voice in different social scenarios:

The bloke isn’t even disabled, and he lives off of it. So, what we did is we went to CEPAL [Economic Commission for Latin America and the Caribbean], and when the chap got up to talk, we said we were leaving the activity because he was living off of the resources and discourse of people with disabilities. (1:161).

Interpellating the omission of the collective and the theft of first-person discourse has been the objective of reiterated work within the trajectories of activists with disabilities in Chile.

Thus, activists demand greater scenarios for impact and visualisation via participation in public and political matters in Chile, as this activist describes:

Some young people, now, and the people from our collective who said: ‘we have to organise in groups, in collectives, in political parties and then bring up the matter’. We’re not going to create a political party just for the disabled, sure, we’ll do it for activism, but to be able to influence politics and the State, we have to occupy the spaces there too. (1:116).

However, this objective is not free from difficulties. The main concern generated by participation in the spaces of institutional power has to do with the tension within the search for the common good. This is what many activists with disabilities call the risk of ‘me-ism’. This situation is interpreted as part of the training process of activism within the disabled world, which undergoes its own social transformation process according to its initial contexts:

Because one of the main challenges is facing me-ism, the ego, individualism, which even the leader has, the lack of political consciousness in the background of every social movement. In Chile there’s no political consciousness that what we’re doing is even political. There’s a lot of innocence too when it comes to facing off against power […] but it’s interesting to see how different people evolve as they sink deeper into reality and expand their analysis, enriching it and growing as activists. (1:45).

In this context, we can partially understand the achievements in national-level social struggles. This makes self-criticism fundamental for establishing future improvements. However, within social participation contradictions and problems arise which are peculiar to the situation of historic oppression which the collective has faced:

For someone who’s lived their entire life getting brushed off, discriminated against, to find that this is a space of social climbing, that they can generate status, they’ll obviously want to fight to be in it and not lose it. So then, the people who stay there, who want to be there, to get their picture with the director of SENADIS [National Disability Service of Chile], go to events in Congress, whatever, I get it, it’s understandable. It’s the only space in their life, and for lots of people it means some status [...] So then, when you start some kind of critique, no way; the comrades will defend that space because it let them get out of their loneliness and exclusion and get into the world, connect with that world. (1:139).

This example can reflect how the rise of a certain public institutional participation of some people with disabilities can itself wind up impeding social mobilization for the collective good. This situation has been a historic strategy in social policy by the Chilean state to achieve social control via assistance programmes (Díaz Velázquez, 2008).

b) Showing defective bodies: public mobilisation

It has been fundamental for every social movement to be able to construct their collective identities and occupations, via public mobilisations of the citizenry. This characteristic is no different for the mobilisations of activists with disabilities in Chile.

It cannot be ignored that it is precisely the matter of barriers and public space access which are ongoing key problems for people whose bodies do not follow the commandment of ‘normality’. This is reflected in the public Facebook profile from the ‘National Disability Collective’ (June 20^th, 2017) during the ‘National March of people with disabilities led by various organisations in Santiago de Chile, 3 December 2019’.

The activists have nostalgic memories of the first massive protest for the rights of people with disabilities in the city of Valparaiso in 2013 as a transcendental milestone for them. This was because it represented moving the ‘problem’ of disability from the private, intimate, family, institutional and domestic environments where people had faced it before, out into the public, social and civic sphere.

However, some people within disability collectives in Chile place little value on revindicative actions. One activist described their experience with the first march thusly:

In that moment, we looked down on the system, I mean, we were used to assistentialism, paternalism, and people are still confused about the same thing. That is, people didn’t go march for their rights. (2:49).

Another activist described their emotions during the first public mobilisations and their impact on the social dynamic:

Seeing that for the first time in Chile there was a disabled group march, during the May Day marches, that the leaders of the CUT [Central Union of Workers] finally realised there were disabled workers, that the CUT president greeted disabled workers in her May Day speech, for us it was an incredible achievement. (1:47).

Visibility in public spaces is one of the main objectives achieved via protests, along with raising the consciousness of people with disabilities as part of the working class, which directly confronted the dominant representation of disability as non-productivity. This is shown in a Facebook profile of the collective ‘Locos por nuestros derechos’ (July 18^th, 2017) within the framework of the ‘2^nd Mad Pride March led by the ‘Locos por nuestros derechos’ collective, 17 December 2016, Santiago de Chile’.

Another public manifestation of citizen protest took place in the city of Concepción in 2019, which is the second largest urban area in the country. An activist mentioned the context of the protest and its impact on regional political organisation:

The second task was to meet with the regional intendent and try to create a regional working table with all the public services, everyone and us, so we could create a regional disability programme. That was our idea. We couldn’t get a meeting with the intendent, we tried every chance to meet with him, but it didn’t work. Then we did a march, we came from San Pedro to here, with the people from Arauco to Concepción. (7:36).

Mobilisations, in some cases, arise as pressure methods against local authorities who constantly refer to the situation of people with disabilities as a minor problem within the larger citizenry.

Furthermore, activists with disabilities must face a series of obstacles arising from their own situation to join public mobilisations, as one activist from Concepción mentioned:

It was the first public demonstration and some people with disabilities didn’t want to move around because of their trouble walking, but there we were. I even fell down. (7:40).

These experiences show the need for and importance of carrying out public protests as tactics and strategies for civic visibilisation. They are popular pressure measures which help create a space denied to people with disabilities.

c) Occupying institutional space: placing bodies in the system

The institution created to resolve the situation of people with disabilities in Chile is the National Disability Service (SENADIS) founded in 2010. This service has been unable to represent the demands of collectives for people with disabilities. Its functionalist, assistential and medical outlook has not prioritised calling for, representing, designing or carrying out public policies for justice and human rights free from ableism to encourage participation and dignified occupations for people with disabilities as political subjects.

This situation has created controversies among activists, who consider this kind of service to be a practice and discourse which provides very few guarantees to drive the social transformations needed to fulfill the Convention on the Rights of People with Disabilities and the revindications of activists with disabilities themselves. Occupying this institutional space with ‘disabled bodies’ represents an act of pressure, discontent and liberation to demand more space for social insertion. One activist described their experience:

We went to occupy the Senadis, supporting the demand from Concepción, and what we did was occupy the offices, we didn’t take over the offices. What that meant was we stayed inside the offices and let everything keep working normally. What happened was that when they were closing for the day, we didn’t leave. So, we spent the whole night there. And the next day they came back, and we let them open up and keep having people in, and we were there. (1:125).

These strategies for visibilising discontent went together with the ‘occupation and take-over’ of the Senadis in Santiago de Chile, considered to be a major action for revindicative forces. One activist had this to say about their experience:

It was a really strong political act because takeovers are really potent political acts, and for me it was exhausting. Plus, there were lots of rows, for the same reason. But, well, it was good experience. And that day when we caused chaos in La Moneda [government palace] was because they were going to have a meeting with [Minister] and all of us who took over were going to be in with them. (8:35).

These forceful strategies have a component talking about emotional experiences, the living bodies and collective occupations, based on frequently contradictory feelings ranging from fear and sadness to hope and joy. They also involve coordination and organisation between activists themselves to create a collective project.

During another experience with protests in the city of Concepción in 2013, an activist mentioned the actions that had to be taken to achieve their demands:

We took over the government house for five hours. The Seremi for social development came, after five hours, and what we asked for was the elevator and the matter of technical assistance, and they offered us social support, food, and modifying the gloss on the Budget for the matter of technical assistance and presenting a project to fund the elevator. The budget gloss was modified. That was something we achieved. (7:48).

This lets us understand how public mobilizations have a twofold sense of struggle: on one hand, they are pressure mechanisms to achieve agreements and compromises, and on the other, they are tools for visibilisation and political organisation. This contributes to building a resistance community for collective occupations wherein activists with disabilities identify with each other.

Discussion

Explore and describe strategies used by Chilean activist with disabilities allowed to know the emancipatory tactics and strategies have different goals in the social and political struggle of Chilean activists with disabilities, as they take place in various dimensions and planes, meaning that collective occupations (Ramugondo & Kronenberg, 2015) are necessary to understand the process which disability social movements have gradually installed.

In this sense, the results of this study reflect in the dimension ‘Interpellating full social participation: demanding justice and citizenship’ one of the main problems of activists with disabilities, as they directly face off with social and civic participation, historically problematic scenarios for the collective (Díaz Velázquez, 2010). These problems arise, to a large degree, due to the subtraction of needs and experiences by so-called know-how (Foucault, 2009) represented via institutions, medical personnel, or family members. This is why some authors (Cea-Madrid, 2018; Pino-Morán & Rodríguez-Garrido, 2017; Pino-Morán & Tiseyra, 2019) indicate that currently established participation strategies are mainly instrumental and in a direct client relation with the few assistential policies proposed by the Chilean State.

The social contract of Western modernity with the citizenry is based on the premise that all people are ‘free, equal and independent’ (Sanz, 2015). Under this condition, specific human needs become invisible. The principal effect of this is that, as people become excluded from this principle there is an increase in second-class citizenship, wherein other (able) people may opine, choose and participate for them, as is the case for people with disabilities.

This makes it necessary to develop what Sanz (2015) calls ‘citizenship - as an activity - desirable’ which involves an active and participative exercise of responsibilities, obligations and civic virtues, but which also understands the needs of all people. This situation can be explained from the political-philosophical perspective of Nussbaum (2016), who denounces that within the basic pillars of this civic contract, people with disabilities are excluded and that subsequently, there is no social contract theory which includes them, with their perspectives and struggles becoming constantly devalued.

Moving on, the findings from the dimension ‘Showing defective bodies: public mobilisations’ implies the exposure of bodies outside the normativity mandate in spaces with public and collective impact. In this way, the body does not only represent an organic entity with disability. Rather, as indicated by Scheper-Hughes & Lock (1987) it represents an individual, social and political body, i.e., it leaves the Cartesian vision of the body behind to give way to the body which feels and thinks, but which also interacts and is part of/with the environment.

For her part, Butler (2017) indicates that within the same act of carrying out demands, rights are conquered, and that therefore being in a historically denied public stage is a level of conquest for activists with disabilities. Following her statements, “in the Street bodies reorganise the space of appearance in order to impugn and annul existing forms of political legitimacy” (Butler, 2017, p. 81) which grants new value to activism and social movements within the disability world in Chile.

Regarding the results arising from the dimension ‘Occupying institutional space: placing bodies in the system’, we comprehend that the concept of occupations materialices the civil rights of being and belonging to a space which should defend the collective rights and duties of people with disabilities. In this sense, the Chilean State denies the historic debt it bears with people who are related to difference. This is why mobilisations carried out by activists are power strategies (Foucault, 2009) for civic political struggles, so that collectivities become resistance tools through which they can articulate their demands and manifest the agreements undertaken with authorities.

This is where the sociopolitical body mentioned by Scheper-Hughes & Lock (1987) becomes relevant, since its exposure not only ‘occupies’ institutions and installations, but also (pre)occupies and discomforts those who are meant to watch out for the common good and tranquility of the citizenry.

Study considerations and limits

Its strengths include highlighting the novelty of its theoretical and conceptual framework. These understandings help with answering the objective of the study, and positively complement its chosen methodological design.

One limitation observed by the team was the lack of nationwide representation for participants. While there are few people who self-identify as activists with disabilities, it is important to broaden the geographical area for future studies.

Conclusions

The strategies of Chilean activists with disabilities reflect life trajectories which can be understood as dissident occupational practices, since they show how their bodies - individual, social and political - subvert the devalued and discriminated position which they hold under current neoliberal social organization. These dissident occupational practices have formed a counter-cultural political movement appealing to a critical community, bringing the social injustices which the rehabilitative medical model hid back out into the public sphere.

This collective struggle centers the legitimation of diversity by desired and desirable bodies in the debate. It demands a recognition of its singularities in civic and cultural disputes, and on this basis manages to advance in its demands as part of modern popular struggles.

Finally, as a challenge, we can visualise articulations with different social movements to face and propose a new social contract, given that, to paraphrase Sousa Santos (2017), we have the right to be equal when difference makes us inferior; but we also have the right to be different when our equality is harmful.

Acknowledgements

This research was supported by the ANID Millennium Science Initiative Program (NCS2022_039).

• How to cite: Pino-Morán, J. A., Zango-Martin, I., Rodríguez-Garrido, P., & Mora-Malo, E. (2023). Reivindicative occupational practices of activist with disabilities. Cadernos Brasileiros de Terapia Ocupacional, 31, e3510. https://doi.org/10.1590/2526-8910.ctoAO269135102

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Edited by

Section editor

Profa. Dra. Ana Paula Serrata Malfitano

Publication Dates

• Publication in this collection
  24 July 2023
• Date of issue
  2023

History

• Received
  23 Jan 2023
• Reviewed
  01 Feb 2023
• Reviewed
  08 May 2023
• Accepted
  22 May 2023