In 1970, in a book entitled Mental Deficiency. An Urgent Matter, the physician and father of an intellectually disabled girl, Luis de Azúa, recounted how the indifference, or even worse, the rejection with which intellectually disabled people had always been considered by Spanish society were being replaced by awareness and recognition. He also stated that this shift in ideas and attitudes was connected to a change in the families themselves: “The families and friends of intellectually disabled people have changed and we have moved on from resignation to non-conformism. We are not satisfied with letting our children vegetate, languidly in many cases or in even worse conditions in many others” (De Azúa, 1970, p. 103). Motivated by these new feelings, Spanish parents decided to come together and create self-organised groups aimed at fighting for their children’s well-being.

As we will explain later, this family movement, talked about by Luis de Azúa, was part of a widespread phenomenon. From the thirties onwards, voluntary associations formed by parents of intellectually disabled people were playing a key role in getting the question of intellectual disability onto social and political agendas all over the world. The interest in studying the emergence of these groups has been growing in recent years. Some authors have analysed this issue within the context of the emergence of the association movement of disabled people in general, like Barral’s article on France (2007) and Scianchi’s one on Italy (2014). Other works have been devoted to study this phenomenon in a more monographic way, focusing on intellectual disability in Australia (Earl, 2011) and, specially, in USA (Dybwad, 1990; Jones, 2004; Castles, 2004; Carey, 2009). There are few studies on the self-organised Spanish groups,1 and they mainly describe the history of local or regional associations (Molina, 2008; Alvarez Urricelqui, 2009; Alvarez Solis, 2012; Espinosa, 2012). The only exceptions have been a monographic study on the history of the National Federation (López Iglesias, 2014) and a book’s chapter where the author briefly examines the first steps of this movement within the framework of the disability protest movement (Bregain, 2013b).

In this paper, we want to offer a more comprehensive view of the family movement during Franco’s dictatorship. By analysing as main sources bulletins and reports published by these disability organisations, we will first contextualise the rise of parents’ activism. Then we will describe the spread of the self-organised groups. Next, we will look at the way in which these associations built their identities and performed their intended functions. Finally, we will focus on the criticisms and problems these groups faced and on the process that led them to take a more confrontational stance.

People with intellectual disability became a concern for Spanish society at the beginning of the twentieth century. Repeating ideas that were circulating internationally and that invoked humanitarian, economic and social protection reasons, some professional groups started defending the advisability of segregating these people in special institutions that could offer them the medical and educational treatment that their condition required. During the first decades of that century, the first institutions intended to take care of the intellectually disabled persons were created in Spain (Del Cura, 2011). The lack of any budget for the few public centres, the high cost of private centres and the reduced capacity of the installations that characterised all of them, prevented these developments from affecting the lives of most of these people and their families.

The advent of the dictatorship in 1939 did not make this situation any better. In the aftermath of the Civil War, several institutions founded in the previous period were closed and their professional staff exiled or removed in ideological purges. Others, although they managed to survive the war and the reorganisations imposed by the new government, needed a large economic investment that was difficult to tackle in an impoverished Spain that was being pushed towards self-sufficiency (Richards, 1998). In addition, the dictatorship had little interest in intellectual disability when defining the social policies on disability for these first years (Martínez-Pérez and Del Cura, 2015)2. Intellectually disabled people did not fit well in the stereotype of productive, healthy citizens that the dictatorship wanted for the New Spain that was being built. Unlike other persons with physical or sensorial impairments, people with intellectual deficiencies were seen as unable to contribute to the common goal of increasing production and the economic prosperity of the nation. These circumstances made them a deeply marginalised collective at that time.

Ernesto Puerto —father of an intellectually disabled child and one of the pioneers of the associative movement—, explained some years later that:

The only alternative parents had was to send their children to one of the few existing specialised centres, but the very few places and, above all, the cost of these institutions forced most of the families to deal with the problem privately. The majority of the intellectually disabled persons were confined to their houses or neglected in long-stay institutions or charitable asylums; remaining invisible to society and the State. However, this lack of suitable services was not the only reason for the invisibility of intellectually disabled people. At that time, parents felt isolated and socially rejected. They usually kept the problem hidden like a guilty secret, seeing it as a punishment or a trial sent by God that they should face with resignation and in silence:

The opening up of the Dictatorship, at the beginning of the 1950s, had an impact on the field of disability. The end of the international isolation provided the regime with much needed financial resources and enabled it to participate in various international organisations such as the United Nations or the World Health Organisation (Pardo, 2008). The new situation permitted the entry of news and information on intellectual disability (via publications or specialised advisers) and allowed Spanish experts to travel abroad and to find out how other countries deal with the situation (Ballester, 2012). Driven by the international ideas and taking advantage of the economic relief, the government started to create several boards and care services (Del Cura, 2016). However, these measures —insufficient and poorly funded— had very little impact on the life of intellectually disabled people.

By the end of the 1950’s, families were disappointed and angered by the barriers existing against receiving the treatment and education their children needed. Moreover, they felt frustrated because State’s effort was mainly addressed at helping people with physical impairments. As we have previously mentioned, at that point, parents decided to change the way they were facing the problem and to bring it out into the open. In order to make up for the lost time, they decided to travel abroad to gain knowledge from “other people´s experience” and to adapt “the tried and tested methods and systems” of other countries to Spain (Raventós, 1964, p. 309). Thus, some parents and, occasionally, experts travelled abroad to see and experience these methods first-hand, to study the legislation, and to contact doctors, pedagogues, heads of centres and, especially, other parents belonging to some of the self-organised groups that had grown up abroad (Borreguero and Ferrero, 1964).

During the thirties and forties, local groups (which were later to take on a national role), appeared in the United States, France, New Zealand and Great Britain. By the end of the forties, the first National Association in Great Britain was set up, the National Society for Mentally Handicapped Children for England and Wales, and in 1950 the National Association for Retarded Children was created in the USA. From the mid-fifties onwards, associations sprung up around the world and by the late sixties there were associations in more than 60 countries and there were around 28 national associations. Additionally, in 1959 the first step towards the creation of a formal international organisation was taken. Three leaders of the movement in Holland, Great Britain and Germany met to plan for a European League of Societies, and as a result, the League was founded in 1960. Two years later, the decision was taken to open membership to all parents and other national organisations working in any part of the world, so creating the International League (Dybwad, 1966; Boggs, 1963). These voluntary organisations started from the same beginnings, working in the same uncultivated field. Everywhere intellectually disabled people were not considered, there was no knowledge about their problem, no official provisions and no public understanding. Frequently, the only solution found for the situation was segregation. For this reason, although there were differences between these groups, regarding the different socio-political contexts in which they arose, they all coincided both in the goals they were pursuing and in the way to reach them (International League of Societies for the Mentally Handicapped, 1967).

As we have previously said, Spanish parents contacted with these foreign experiences and in doing so they met new conceptions on intellectual disability, they felt their feelings legitimated and they got inspired to organise their own parent-sponsored associations.

Some of these Spanish parents came from the city of Valencia. They were part of a group of fathers and mothers that —sharing similar problems and the wish to get their children a better future— began to meet regularly in the mid-fifties. In 1957, this group of parents decided to ask for government authorisation to found an association. As soon as they did it, they were placed under suspicion. In Franco’s Spain, political parties were forbidden (with the exception of the official one) and all associations were fiercely monitored. Dictatorship judged the associative movement as a source of instability, therefore the few groups permitted, apart from those belonging to the Catholic Church and the National Movement5, were obliged to prove they had no political agenda (Sánchez, 2005; Maza, 2008).

As Ernesto Puerto (the first president of the association) related in the interview he gave in the mid-1980s, the parents of Valencia suffered a government inquiry. Their proposal had to be revised and accepted both by the General Authorities for health, education and public order and by the Church. Moreover, the police visited their houses during the night demanding to know their political background and they were also obliged to appear before a judge to explain their intentions.6

They needed two years to get a final approval. In 1959, the first Spanish self-organised parent’s group, the Association for Abnormal Children (with the acronym ASPRONA) was set up in Valencia. One year later, activists from Valencia made contact with other parents who had established a second group in San Sebastian. In 1961 both associations sent some members outside Spain to attend a conference organised by the European League of Societies for the Mentally Handicapped in London, and to visit education and care centres, adults’ homes, and sheltered workshops in England and Holland (Puerto, 2014, p.16). On their return, ASPRONA representatives sent an open letter to several national and local newspapers to get their association known and to encourage other parents of intellectually disabled children to follow suit.

Their call was successful. By 1963, there were more than 15 associations dotted around the country. These groups inspired the First Technical Conference on the Subnormal Children’s problem.7 A meeting organised in Madrid by the National Delegation of Associations, which brought together experts, government representatives and parents. During the conference, the young associative movement was discussed, and parents were encouraged to found new provincial groups, incorporating experts and public workers as advisors (Suárez and Buceta, 1964). Additionally, the creation of a national federation was recommended as an intermediary with the central government (Puerto, 1964). Just one year after the conference, in 1964, the Spanish Federation of Associations for Subnormal Children (known as FEAPS)8 was created, gathering together 20 associations and 7480 members. The FEAPS’ role was to promote and guide the regional groups, to connect them with the public administration, to organise informative actions (conferences, meetings…) and to promote research on intellectual disability.

One of the FEAPS’ first actions was to continue the campaign that ASPRONA had started. It was necessary to persuade the families of the importance of joining together and the rest of the society of the value to become “supporter members” (Raventós, 1964). This new call coincided with the passing of a Law of Associations9 that in turn, responded to an increasingly tolerant attitude by the dictatorship towards social participation movements, whenever, obviously, these movements had no political inclinations, or concealed an ideology that opposed the regime (Radcliff, 2009). In this new scenario, parents’ organisations began to spring up around the country and, by the end of the dictatorship —in 1975— there were around 110 (local or provincial) groups. The highest number of associations was along the east coast —Valencia (4), Alicante (4), and especially Barcelona (13)—, and only one province (Guadalajara) had none at all.

In creating the associations, Spanish parents wanted —like parents abroad— to provide both a source of mutual aid and comfort and a basis for direct action to obtain better education and opportunities for their children. They wanted to identify the problems both they and their children had to face and to get the State to provide real solutions. From a practical point of view, their main goals were to promote the training of specialised staff and to encourage the setting up of care and rehabilitation centres, schools, professional training centres and sheltered workshops. The direct participation of these associations in the creation of the aforementioned services was optional, but not recommended due to the economic and organisational difficulties the management entailed (De Azúa, 1970; Pérez Marín, 1968).

However, parents were more ambitious; they aspired to developing a better understanding of their children´s condition by the public, experts and the government and to bringing about a social change that would result in the widespread acknowledgement of the right to social integration for intellectually disabled people. They wanted to transform families, mobilising them and eradicating attitudes of shame and fear via pro-active guidance. Moreover, they hoped to change the social image of their children and themselves, doing away with the attitudes of rejection and compassion found in society; destroying the idea of un-recoverability (which was particularly associated with the more severe cases); and wiping out the unfair relationship between recovery and economic return that both the State and the society expected to obtain. Although the potential productivity of their children was one of the main reasons used, at that moment, to justify access to services and rights, parents wanted to ensure that every child, regardless of his or her productivity or level of adjustment, received services.

Despite their work, the associations came up against fierce criticism and many problems right from the start. In 1968, the director of the FEAPS’ magazine wrote in one its editorials:

The starting point of these problems was related to the nature of the associations themselves and the way in which they had been organised (Bittini, 1973). From its creation, groups faced difficulties to find experienced leaders, able to represent the associations and to fight for the general interest. They were unable to reach a productive coordination between the associations and FEAPS. In addition, they could not convince families to get involved in their adventure. Membership levels were very low, compared to affected families (between 7% and 8%), and it was very frequent for associates to leave the associations (especially amongst older members) either because they had solved their children’s problems or because they thought that they got little out of association. Moreover, the level of information and/or training of the families was minimal; most parents did not read material related to their children´s problems, did not follow the courses or attend the conferences the associations organised. Finally, any active participation was rare, only about 5% of members attended the meetings regularly, something they tried to change through appeals published in their bulletins. (Instituto de Sociología Aplicada, 1969).

Besides these problems, the associations had to face, as we said earlier, much criticism. They were accused of being elitist, with a lack of dialogue between the management and members, and of being made up of middle to upper class families and of marginalising the neediest families. This is something that some actors of the family movement fiercely denied, citing the restricted economic criteria required to get public grants and subsidies and the large number of members receiving this aid (it was a way to prove that there were a lot of needy families in the associations). However, the truth is that most of the founders (and of those holding the managerial positions) came from well-off families, they had university qualifications (some were lawyers, doctors or teachers) and in some cases, they were well-connected with the local authorities. Parents’ groups were also reproached for being impulsive and unthinking and for believing they were sufficiently qualified to participate, along with professionals, in the process of rehabilitating and re-educating their children (Puerto, 1970). Both facts were justified by the parents: it was necessary to be passionate to carry on their struggle, and participating in their children’s recovery was a right inherent to their condition as parents and under no circumstances did this imply questioning the specialists’ authority.

Finally, they were accused of not being very effective and for achieving little. Despite their efforts, the associations had managed to change the situation for intellectually disabled people and their families only slightly, among other reasons because they lacked the sufficient funding to provide new services and/or maintain the already existing ones, and to employ trained staff to help run them. The associations depended on membership fees and on donations made by private institutions (such as building societies) or by citizens through charity events organised to raise funds. Public subsidies were, throughout this period, small and few and far between (Puerto, 1970). At the beginning of the 1970s, only 8% of intellectually disabled people in Spain received any kind of extra family care and there were still 11,000 persons living in psychiatric institutions. There were huge inequalities in protection depending on the age and level of intellectual disability of each person (the best being for children between 6 and 14 years with a moderate level of intellectual disability). Furthermore, there was a yawning gap between the real cost of the care and the public aid received, which moreover was limited and rather restrictive (Fierro, 1971).

In time, the actual associations themselves, or at least some of their members, started becoming more self-critical (Eguía, 1970; 1971). They acknowledged that it was necessary to make membership more attractive, offering support services to the worst-affected families. It was also essential to put the management of the associations into the hands of full-time, qualified teams, and to incorporate new, young people (interested citizens or siblings of those with intellectual disability) for executive and management tasks. These changes had to be accompanied —and this is the most interesting point— by a transformation in the thinking of the parents’ groups. They had to reassess the role that their intellectually disabled children had to play in the associations. The idea to consider them as “children who never grew up” was, in some activists’ opinion, inaccurate and paternalistic. If parents were really fighting to ensure their access to rights, they should allow them to speak out about their experiences and to make decisions about their future (Raventós, 1972).15 Lastly, associations had to take on a more critical posture, moving on in a determined way to the nonconformity that had inspired the pioneers of the associative movement (De Azúa, 1970; Azúa, 1972).

By the end of the dictatorship, parents’ associations were aware that their task was incomplete and knew that, in a way, they had failed to bring about changes in the lives of their intellectually disabled children. When advocating social rights, the dictatorship answered with a weak system of social services and subsidies. A paternalistic solution that made them dependent and pushed them into the dilemma of choosing between solving the most urgent needs and fighting for a more in depth political change. Associations’ claim for specific care and protection achieved the recognition of their children’s specificities, but their hope of raising public awareness to make them regarded as equal citizens was not fulfilled. Nonetheless, given the barriers they faced and the context of lack of freedom in which they were acting, the progress made during this time was remarkable. By becoming poles for the construction of the identity of intellectually disabled persons, defenders of their rights, and founders and managers of specialised institutions and services, self-organised parents groups played a central role in constructing the field of intellectual disability in Spain. Their work served to make intellectually disabled people visible and to legitimise their demands, leading the way toward the greater changes that would come with democracy.