Abstract
Parents and their disabled children in both German states faced discrimination and severe challenges in the organisation of family life. In the German Democratic Republic (GDR) and the Federal Republic of Germany (FRG), from the 1960s onwards, parents achieved more far-reaching influence over the schooling and overall treatment of their children. The reasons for and avenues of parental empowerment were different on both sides of the border. In West Germany, collective action within a civil society framework was the major factor behind parental empowerment. In the GDR, parental protest tended to be more individualist and was often voiced via the petitioning system (Eingaben).
Keywords
For most new or expectant parents, the diagnosis that their child is disabled presents a severe blow to previously held plans for future family life. Disabilities, in many cases, thwart parental arrangements of care work and complicate everyday logistics, for instance regarding schooling. In addition, therapies and prosthetics are often an immense financial burden to the household. As much as these issues put pressure on families today, as can be gleaned from contemporary parental accounts, 1 they also had to be addressed by families in both the Federal Republic of Germany (FRG) and the German Democratic Republic (GDR) during the German division. While statistically, about 10% of minors are either born with or diagnosed with a disability during their adolescence, historical scholarship has paid scant attention to them. Despite current initiatives to unearth and compensate the violence experienced by East and West German children in residential institutions, 2 until recently there has been very little research on the large proportion of families raising children with disabilities at home. 3 Disability history remains an emerging field of scholarship that, with regard to post-World War II history, has mostly focused on the history of social policies for people with disabilities, cultural representations of disabled people, the history of social movements of and organisations for people with disabilities, and the history of institutions, rehabilitation and special education. 4
One explanation for the shortage of comparative GDR-FRG research on people with disabilities is that disability only very rarely took centre-stage in the political relationship between East and West. In contrast to the treatment of pensioners or the unemployed, 5 welfare for people with disabilities was only occasionally an ideological arena of Cold War propaganda. In both states, stereotypes about allegedly unproductive people with disabilities lived on long after Nazi eugenics was officially disavowed. 6 Both governments were aware of the immense costs involved in child therapy and the insufficiencies of the underfunded special educational and childcare infrastructures. Shortages in all areas of rehabilitation remained so obvious in both East and West Germany that, with notable exceptions, 7 the efforts towards rehabilitation and integration could never be unequivocally referenced in order to highlight the alleged superiority of either system. In this sense, looking through the lens of disability offers a new perspective on Cold War history 8 beyond its confrontational propaganda, highlighting similarities and (private and professional) exchanges 9 between East and West.
Overall, historical research on people with disabilities in the GDR and FRG stress similar processes of rising social awareness of people with disabilities, and improvements in social benefits for people with disabilities from the 1960s onwards. Very few comparative perspectives have attempted to nuance these similarities and work out possible differences in the everyday lives of people with disabilities or their household members across the inner-German border. 10 In both German states, prejudices against children with disabilities diminished over time. In addition, caregivers gradually had more success with lobbying for financial measures and better educational infrastructures for their individual children. However, – and this is the central argument of this article – the development of this parental agency took contrasting forms and diverging paths that relate to but cannot be solely explained by the political dichotomy of a liberal (capitalist) democracy and a socialist dictatorship. Rather, parents actively and strategically sought opportunities to voice their interests within the respective system.
For the purposes of this article, agency is seen as the capacity to address perceived deficits in the state's support system for households with disabled children. In particular, (a high degree of) agency fosters parents’ ability to successfully influence the state's efforts. Despite the diverse nature of the physical, psychological, cognitive and sensory disabilities of the respective children, this article will discuss their households as a group. Not only was the collective rubric ‘behindert’ (disabled) and its attendant stereotypes extended to all these children, but (although with different intensity) most of the parents had to address similar issues around the logistics of schooling, the eligibility for state benefits that could finance prosthetic devices and rehabilitative measures, and the overall (re-)distribution of the care work. Nevertheless, this article will highlight stark differences in family life with regard to the variety of disabilities among the respective children. The article dwells on the challenges for the respective households. However, this problem-focused approach does not frame the individual person with a disability as a burden on his or her immediate surroundings – a cultural tendency that disability rights movements have rightfully called out as ableist for many decades 11 – rather, the article nuances the effects of stereotypes and persistent exclusion on all household members.
The following analysis is based on egodocuments of individual parents, as well as on texts authored by experts and material issued by parental interest groups. While in West Germany, caregivers of children with disabilities formed organised pressure groups, East German caregivers often relied on individual petitions to inform state officials about their hardships and their demands. Whereas the importance of collective civic engagement has been well documented for West German history from the 1960s onwards, the successes of East German parents sit uneasily with established top-down narratives such as Jürgen Kocka's idea of a ‘thoroughly-ruled society’ (durchherrschte Gesellschaft), 12 or Konrad Jarausch's notion of a welfare dictatorship (Fürsorgediktatur). 13 In East Germany, parents were more often successful as individuals than in organised groups. Here, parents creatively und successfully used the state's emancipatory rhetoric in petitions to highlight the legitimacy of their demands. However, while the SED leadership explicitly committed to bettering the lives of people with disabilities from the late 1960s and early 1970s onwards, the everyday realities of most caregivers remained marked by logistical and financial difficulties. It was in the realm of the churches that parents were subsequently further empowered to demand improvements from below. In church seminars, a social niche formed that, at least occasionally, allowed parents to act even more confidently and set out their demands to state officials.
While this article contrasts the diverging manner in which parents acted, it also highlights chronological similarities in parental empowerment. The argument distinguishes three phases: In both post-war German states, parents of disabled children were cautious about addressing their problems, as they were aware of pervasive eugenic thinking. Around the turn of the 1960s, parents, empowered by increased media attention on disability and a more accepting public, began to act more confidently and challenge persistent stereotypes. In the later 1970s and 1980s, parental demands expanded and diversified in both the FRG and the GDR.
Enduring eugenic stigmas and diverging disability hierarchies (1940s–late 1950s/early 1960s)
In both German states, apart from campaigns against polio epidemics, children with disabilities were rarely the subject of public discourse during the immediate post-war years. On the one hand, this was due to lasting eugenic stigmas. Until the later 1950s and early 1960s, domestic family life with a (cognitively) disabled child often remained unthinkable because it entailed constant questions about family heredity and, thus, the prospect of the household losing its social status. A child with a disability, particularly with one that was or was thought to be congenital, stigmatised the entire family. Eugenic thought had begun to escalate in Western culture during the later decades of the 19th century, and it pervaded social policies in the first half of the 20th century. In Nazi Germany, notions of so-called ‘life unworthy of living’ enabled hundreds of thousands of murders known as Aktion T4 or, in the euphemistic Nazi terminology, ‘euthanasia’. 14 It is therefore not surprising that some parents relocated their cognitively disabled children to remote villages in order to hide them from the public eye during the immediate post-war years. 15 The persistence of eugenic stigmas after 1945 was one reason why middle-class parents in particular placed their disabled children in residential facilities, even though these were often incriminated in previous murders and forced sterilisations.
Another factor that nudged parents towards institutionalising their children was the implicit hierarchy of family care for people with disabilities. In the post-war period, male veterans remained at the top of this hierarchy. 16 1.5 million ex-servicemen returned to Germany's western occupation zones either physically or mentally wounded. Haunted by dreams of the past, the former soldiers were often unable to take up their former role as providing fathers, as has been well documented by Vera Neumann, Frank Biess and Svenja Goltermann. 17 Wives, sisters and daughters often had to perform care work as well as earn the family income. In West Germany, the high number of veterans in need of care became a catalyst for the creation of a nationwide infrastructure that allowed women to recover from their (increased) care work. For the first time, the widespread exhaustion of female caregivers was addressed in the political arena as a core social concern. In 1950, the federal president's wife, Elly Heuss-Knapp, initiated the so-called Müttergenesungswerk (MGW), an organisation that to this day offers periods of rest still mostly to female caregivers, to meet the ubiquitous burdens placed on female household members. The MGW began in the early 1950s and soon established ‘Sonderkuren’, 18 special resting periods for specific groups of women with a particularly high load of care duties. However, these Sonderkuren were initially reserved for mothers who were married to wounded veterans, wives of alcoholics or themselves diagnosed with cancer. 19 Mothers of disabled children, while surely equally fatigued, remained excluded. In other words, West German mothers of children with a care-intensive disability had to find different ways of reducing their workload. They often did so by prioritising care for different household members. Unsurprisingly, the care of wounded husbands took precedence over the care of children with a disability. This is one explanation why children remained institutionalised.
In the Soviet Occupation Zone and the early GDR, privileging former Wehrmacht soldiers (or their spouses) over other people with (physical) disabilities was unthinkable. 20 The state's agenda of fostering a new, ever-productive socialist personality also made the social status of children with disabilities problematic. In 1958, the fifth SED party congress devised a Decalogue that was read by Walter Ulbricht and became publicly known as the Ten Commandments for the New Socialist Man (Zehn Gebote für den neuen sozialistischen Menschen). The eighth commandment reminded parents: ‘You should educate your children in the spirit of peace and socialism to be well-educated, strong-willed and physically strong people’. 21 This example highlights the moralistic, quasi-religious rhetoric of the new socialist personality, which insinuated that a failure to meet these educational goals was a sign of political deviance. 22
In addition, despite the high rate of working women and the state's rhetoric of female emancipation, the traditional family model remained in effect in the socialist GDR. Household, child education and other care duties were still primarily the mother's domain, with female employment being added on top. 23 Families with disabled children were no exception: a child's disability and the added load of care work at home did not (automatically) precede a mother's duty to be part of the workforce or exempt her from it in the eyes of state and society. Mothers remained expected to work and to be the primary caregiver for a disabled child in the familial home. In this area one can also add, as Florian von Rosenberg pointed out, that the GDR's nursery system, erected quickly to allow women to work, was often not well received as cribs had long been associated with poor-relief institutions. 24
During the first decades of the GDR and the FRG, parents of disabled children remained hesitant in addressing their needs. In both states, a child with a disability rendered once anticipated gender roles unattainable – particularly for mothers. In West Germany, even women who envisioned themselves as stay-at-home mothers were often so consumed by their care for the disabled child that they were unable to carry out care work for other children or their spouses, which, in turn, put marital relationships under pressure. Intense care work for a disabled child likewise fell on East German women, who were therefore often not able to take up paid labour, thus not fulfilling the socialist ideal of the wage-earning woman. One solution for these issues was the institutionalisation of the respective child. Nevertheless, there were also other reasons for placing one's child in a residential facility. Among them was the virtual absence of specific day care and schooling institutions for children with different types of disabilities in both states. 25 Many parents believed that experts in residential institutions would be best placed to treat individuals with (mental and psychological) disabilities. Direct initiative for placing someone in a residential institution often came from family members. 26 Aside from the discrimination people with disabilities faced in public, this preference for institutional care also stemmed from more practical considerations. Even if (special) day schools were available, school transfer in buses was either not possible because of physical barriers (children with physical disabilities) or very dangerous because of the unregulated nature of post-war traffic (children with cognitive and/or visual/auditory disabilities). 27 In addition, physical barriers existed in most regular school buildings. Many parents were thus inclined to institutionalise their children, as residential facilities not only promised to educate the respective child but also often offered intramural job opportunities for the child after the schooling was completed.
The 1960s: collective and individualist parental empowerment
In both German states, however, the scarcity of disability-specific residential institutions, 28 the poorly paid jobs that the residential homes (Heime) promised and their hygienic insufficiencies soon frustrated parents. But, more importantly, fathers and mothers became unwilling to forsake domestic family life because of a mere diagnosis. As post-war hardships receded over the course of the 1950s, more and more parents began to question whether the separation of the disabled children from their homes was beneficial to the individual child. In West Germany, middle-class parents clung to hegemonic family ideals and started to challenge the social stigma attached to having a (cognitively) disabled child that would have prevented them from living a nuclear family life. To name the most prominent association, the parent lobby group Lebenshilfe [Life Aid], which counts to date about 120,000 members, was founded in 1958 with the aim of deinstitutionalising (cognitively disabled) children. 29 To be clear, in the 1950s deinstutionalisation meant setting up special day schools (Tagessonderschulen) separate from residential institutions. Effectively, it was the goal of these parent organisations to establish a daily rhythm of family life that was indistinguishable from middle-class families with non-disabled children. Other examples of disability-specific Vereine include the so-called Hamburger Spastikerverein [Hamburg Spastic Association], that was founded in 1956 and is today known as Leben mit Behinderung Hamburg [Hamburg Living with Disability]. In 1967, the Bundesarbeitsgemeinschaft Hilfe für Behinderte [Federal Association of Aid for People with Disabilities] united these various disability-specific groups as an umbrella organisation.
One pivotal event accelerated this agenda in West Germany. The Thalidomide scandal (Conterganskandal) completed a shift in the public approach towards disability that had already begun with the coverage of polio epidemics and car accidents during the 1950s. While eugenic beliefs remained widespread in West German society, disability was now increasingly understood as a threat to every family, even during peacetime.
Thalidomide was used in medical products in 46 countries, 30 among them the UK and West Germany (but not the GDR and most other socialist countries). Thalidomide consumption during pregnancy led to an estimated number of 10,000–20,000 children being born with prenatally altered bodies. After the effects of thalidomide became apparent in 1961, a public scandal ensued in the FRG. 31 Blaming insufficient drug regulation, the West German media heavily criticised the government, and especially, with more than a tinge of misogyny, the West German minister of health, Elisabeth Schwarzhaupt (CDU), the first ever female to head a federal ministry. 32 Within the media discourse, a new imagery took shape. For the first time since World War II, images of children with physical disabilities were shown in daily newspapers. Even more, these toddlers were depicted as the objects of maternal love. The thalidomide scandal fell within a transformative period in West German journalism, which was turning towards a more confrontational style and at times government-critical stance, as Christina von Hodenberg has analysed. 33 Tabloid newspapers criticised discrimination against families with a ‘thalidomider’ and the poor state benefits offered to them, while calling for or rather demanding maternal love and devotion. In the West German public, the Contergan scandal granted new legitimacy to the demands of parents of all children with disabilities for better infrastructures and higher benefits. 34
But to what extent did the lobbying of parent organisations and the public attention transform everyday household rhythms? Education may serve as a good example. The thalidomide scandal amplified parental calls for integrated education, at least for children with a physical disability. In letters to politicians, parents of ‘thalidomiders’ demanded accessible Gymnasien [secondary schools preparing for university entry]. 35 Later, most of these parents settled for special schools, as they also feared that non-disabled children would bully classmates with a visible physical disability. While, therefore, the thalidomide controversy and parent organisations effectively further strengthened secluded special education, more and more of this education was now taking place in day schools. Between 1955 and 1976, the number of special schools for children with a physical disability alone rose massively from 13 to 90. An increasing percentage of these institutions were now organised as day schools, thereby radically shrinking the commuting areas of the individual schools. 36 The rising number of day schools was, in turn, the precondition for the organisation of accessible daily bus transfers that allowed parents to spend time with their children in the afternoon.
The overarching goal of organisations like the Lebenshilfe was to reduce logistical and legal obstacles that prevented families from living a nuclear family life. Schooling was only one of the domains where we see an increasing convergence of family realities with non-disabled and with disabled children. Similar arguments could be made for tax exemptions or child health insurances that were extended to families with disabled children over the course of the 1960s. 37 Furthermore, in response to pressure from individual parents and associations such as the Lebenshilfe, the MGW also offered Sonderkuren to mothers of disabled children from the mid-1960s onwards. 38 Indeed, between the late 1950s and the early 1970s, children with a disability became part of the nuclear family ideal in the FRG.
While parents became members of these organisations because of their individual family situations, the organisations always lobbied for the parents as a collective group, thus achieving structural improvements (for instance in the domain of schooling) that did not necessarily help each individual household. Whereas in the late 1950s and 1960s middle-class parents in West Germany sought an association with experts in Elternvereinen [parents’ associations], such NGO engagement was not possible in East Germany. However, during the 1960s in East Germany, too, disability became a topic of public debate, and parents began to question the poor childcare infrastructure and the implicit expectation that mothers were to refrain from wage labour in order to do care work. Compared to the FRG, their protest was more isolated and less based on a peer-support system. Parents began to use, in particular, the public petitioning system that was already ingrained in the GDR's constitution of 1949. Citizens were granted the right to address requests and criticism to all state agencies, whether on the local, district or national level. This form of input could be voiced in person but was mostly sent in the form of letters, either directly addressed to the respective state agencies or forwarded by the press and other media. 39 The semantics of this type of asymmetrical communication have been frequently analysed in historical scholarship on everyday life in the GDR. 40 As Pia Schmüser pointed out, the value of Eingaben [petitions] for the GDR's disability history cannot be overestimated, as ‘several thousands of these documents’ 41 relating to the lives of people with disabilities have been archived. 42
During the 1960s and early 1970s, for example, mothers insisted that if no child care institution were to be created for their children, they would be forced to abandon their day jobs. 43 East German officials took such complaints seriously and, in most cases, acted in good faith to help the respective petitioners. In her dissertation, Pia Schmüser documents both friction and cooperation between state officials and individual parents but underscores the inclination of officials to help individual petitioners. To give only a few more examples, in 1968, a GDR ministry supported petitions by one of its female employees for finding a place for her cognitively disabled child in a residential institution. While the employee sent letters to the central committee and Walter Ulbricht personally, the ministry itself submitted another petition on the mother's behalf. In 1967, a mayor from rural Mecklenburg helped to find a day care place for a daughter of one of the residents in his village. Even in politically sensitive cases, the state organs tended to be supportive. In 1969, GDR ministries, for instance, granted a parental request to import an electric wheelchair from West Germany. 44
This generosity can also be explained by the state's lack of knowledge on how many adolescents with certain disabilities were actually living in the GDR, let alone in which region. Thus, a major problem for the East German government was the reporting of children with a disability and the collection of data. Although the GDR leadership urged doctors to report cases, no coherent database existed. This meant that GDR officials in the 1970s were still relying on rough estimates of the frequency of disability within its population (7% of children were living with a disability, according to a study by Rostock University). 45 State officials had to take into consideration that there was a substantial, yet indeterminate number of parents who could demand nationwide reforms if they knew of the structural deficits in the rehabilitation system. Through an exchange of letters, officials helped individual petitioners and more often than not solved the respective household's problem. However, as these exchanges were generally not made public, officials did not have to worry that they constituted precedence for other cases, as information travelled slowly.
To address (the costs of) caring for children with disabilities, there was also a tendency in East Germany to further emphasise prevention rather than rehabilitation. In 1972, the GDR lifted legal restrictions on abortions during early pregnancy. 46 In the 1970s and 1980s, a network of genetic counselling facilities was established in GDR. Like in Western countries, East German counsellors recommended abortions based on the so-called risk of the newborn child being born with a disability. 47 While the (disability) history of West German genetic counselling has been well documented by Britta-Marie Schenk and others, we still require more extensive research on whether and how genetic counselling affected the attitude towards children with disabilities in the GDR. 48 Overall, in both German states, beginning in the late 1950s and early 1960s, parents demanded that domestic life with a disabled child should be possible without having to refrain from the system-specific family ideals and gender roles.
1970s and 1980s: new varieties and areas of empowerment in the two Germanies
In the context of gender roles, it has to be stressed that care realities in families with disabled children placed even tighter constraints on mothers than was already the case in other families. To put this more pointedly for West Germany: the acceptance of domestic life with disabled children came at the price of clear expectations directed at their mothers. Mothers were particularly discouraged from taking up (part-time) jobs by therapists, who wanted mothers to repeat therapeutic exercises with their children at home. 49 In the 1960s, mothers often accepted such daily hardships simply because they held out the prospect of the household being socially accepted as a family and, in the case of so-called collaborative or conjoint therapy (Co-Therapie), also in order to help the child.
Inspired by prevalent discussions of gender roles in the wake of the (second-wave) feminist movement around 1970, the first vocal female objections to these expectations emerged. In 1972, the largest West German parenting magazine Eltern ran a home story about the family of a child named Gregor, a boy diagnosed with a cognitive disability. The article presented an optimistic narrative that during the 1960s had almost become formulaic for most media portrayals of parents coping with child disabilities. The newsroom of Eltern soon received a fuming letter by a different mother who was offended by the article. She complained about the romanticised style of reporting that highlighted the delight of parenting and did not mention any hardships. ‘If one doesn't know anything about how these children are – then I guess one can ‘love’ such children’. 50 She clarified that she welcomed the topic of reporting but took offence at its ‘tacky style that almost made me feel nauseous’.
This letter can be read as harbinger of maternal protests against being reduced to be care workers and co-therapists. For the 1980s, these increasing objections can be illustrated by the so-called Familienentlastender Dienst [ It [the FED] is a great relief for me, as I have three children and the youngest [is] disabled. This means I have the opportunity to go to work once a week and get some relief because the stress in the household and with the family is so intense that I need that one day on which I can do something for myself.
51
The FED quickly became a successful model nationwide. In 1986, 60 of these self-organised services were already offering downtime from child care. As these services were incorporated into the Lebenshilfe structure, their numbers multiplied even more rapidly, reaching 200 by 1989. 52 While the demand was constantly growing, their financing remained precarious. At the time, none of the federal support systems applied to institutions that addressed the demands of caregivers rather than those of care recipients.
Over the course of the 1970s and 1980s, the landscape of advocacy for people with disabilities changed in West Germany. Various groups challenged the authority of established parental groups like the Lebenshilfe. Among these was a host of self-advocacy groups that collectively formed the West German disability movements, ranging from rather integrative organisations such as the ‘Clubs for People with Disabilities and their Friends’ (Clubs Behinderter und ihrer Freunde/CeBeeF) to the radical, self-proclaimed ‘Cripple Movement’ (Krüppelbewegung), which excluded non-disabled people. 53 All of these groups challenged the domination of parents within the discourse on disability rights. The self-advocates were often joined in their protest against parent organisations who favoured secluded special education (i.e. the Lebenshilfe) by integrative parent groups in the 1980s. In the 1970s, integrative pioneers were often part of or inspired by the Kinderläden counterculture. These were day care centres based on Marxist and psychoanalytical ideas of liberating children from heteronormative, authoritarian and capitalist structures. In 1985, parents with various backgrounds and from all over West Germany formed the alliance ‘Parents Against Seclusion’ (Eltern gegen Aussonderung). 54 Overall, lobbying for children with disabilities diversified over the course of the 1970s and 1980s. What remained the same, however, were the organisational patterns as civic lobby groups. In other words, old Elternvereine were challenged by new ones and by the sometimes similarly organised new social movements of people with disabilities. 55
In the East, the new state leader, Erich Honecker, presented the party plan to unite economic and social policies (Einheit von Wirtschafts- und Sozialpolitik) in 1971. These policies explicitly highlighted the need to address the situation for people with disabilities. 56 Once again, parents took up the rhetoric of state officials to indicate the discrepancies between political declarations and everyday life, particularly when placed in comparison with West Germany, where the Brandt government had taken up the call by the International Society for the Rehabilitation of the Disabled (today Rehabilitation International) and declared, at the beginning of the 1970s, that this would be a ‘decade of rehabilitation’. 57
One example will help to illustrate this strategic use of the system conflict by parents. In 1972, an East Berlin mother complained about the fact that equipment for gymnastics was subpar or unavailable in the GDR and, therefore, had to be imported from West Germany. In her letter, which was addressed to a journalist on the TV show Prisma but soon reached the federal ministry of health, she explicitly described herself as doubly concerned about such shortages both as a mother and as a ‘Genossin’ [comrade]. ‘I have to say that I think it is a disgrace that citizens of our republic […] should be forced to write to West Germany in order to beg for alms, particularly as our health care is in general, especially when seen in contrast to the FRG, highly commendable’. 58
Overall, as in the example above, East German parents tended to highlight the superiority of socialism (which they then contrasted with real-life shortages) when addressing the state. In addition, whether strategically or not, they professed their loyalty to the socialist state. In their letters, and this is also because of the genre of individual petitions, East German parents frequently highlighted their own (recreational) needs rather than solely the child's need to be supported (gefördert). 59 While references to the need for recreation also appeared in letters West German parents wrote to politicians, 60 their letters were often answered in a bureaucratic fashion devoid of empathy, with legalistic references to the social security measures the Federal Republic had established to support households in need. 61
In select cases, the need to improve the lives of households with disabled children could be directly addressed in public media. From the mid-1960s onwards, the Berliner Zeitung featured family counselling articles (‘Elternsprechstunde’). In November 1975, the daily turned to children with cognitive disabilities, whom they also described as ‘problem children’ (‘Problemkinder’). The article heading called for ‘understanding instead of pity’ and the text focused on a local dispensary in Berlin-Karlshorst. Here, physician Gerda Jun, who in the 1980s published a collection of interviews with East German parents of disabled children, 62 had established a one-of-a kind counselling and discussion forum for parents of cognitively disabled children. In an interview quote, Jun stressed the SED's public commitment to bettering the situation of people with disabilities and argued that this promise should be extended to their parents. Alongside Jun's argument, the article also quoted five mothers relating experiences of exclusion while highlighting that acceptance was possible if the wider public was educated on disability. 63
The most important avenue for East German parents to influence their everyday life remained individual petitions. During the 1970s, however, parents found new support from two different groups in their struggle for better domestic living conditions with their disabled children: special educators and church officials. While in West Germany, special educators and other experts from the medical fields focussing on disability had been members of the Lebenshilfe and other parent organisations from the 1950s onwards, in the GDR experts only began to urge parents to remind state officials of their socialist promises for rehabilitation during the 1970s.
Of course, in scholarly textbooks, East German special educators praised the superiority of ‘socialist defectology’ and the GDR's rehabilitation system.
64
When asked directly by West German visitors, GDR paediatricians and special educators commended the East German health and rehabilitation system. In 1970, the West German author Erika Runge questioned citizens in the port city of Rostock about their everyday lives in the GDR. Regine F., identified as a senior physician on the psychiatric ward of Rostock's county hospital, assured Runge that only socialism would be able to provide adequate care for people with disabilities. Her answer also revealed the persistence of eugenic notions amongst special educators: Some luminary in our field once said: The character of a state manifests itself in its care for the insane. And that is really the case. What an incredible burden – seen purely from an economic perspective – these sick people are on the state. Society does not benefit from them; it only pays for them [investiert nur]. Just think what is needed to keep the psychiatric child ward up and running! In practice, only a state that is there for its people is ready to do so – it is a sign of our socialist humanism.
65
However, while experts officially stressed the superiority of the socialist treatment of children with disabilities, they now hinted, that parents needed be more active in their contact with state officials. In guidebooks, experts began to directly address parents. The doctors Brigitte Schwarzbach and Ursula Walter advised parents to actively lobby for their children's rights and warned them against pervasive bureaucracy: You have to keep in mind that even in a socialist state, improvements are not implemented smoothly, that bureaucracy or a lack of understanding, and especially the lack of staff and the unwillingness to accept added responsibilities, can play a role. Therefore, do not rely on the responsible behaviour of the relevant state organs, but rather show initiative as an active and vocal citizen, because it is up to you in which environment your child shall grow up.
66
In addition, at least slightly contradicting the working mother ideal, the two female physicians acknowledged that mothers of adolescents with so-called severe disabilities (Schwerstbehinderte) should ‘even in a best-case scenario’ only work ‘part-time, so as to have the afternoon for therapeutic exercises (Übungsbehandlung) and general assistance of their children’. Unlike West German experts urging women to refrain completely from wage labour in order to do so-called Co-Therapie, Schwarzbach and Walter reasoned that parents should demand an expansion in the infrastructure of crèches and Sonderkindergärten [special nurseries] because these were ‘the prerequisite for you as parents, or rather as mothers, to fulfil your constitutional right to work’. 67
Schwarzbach and Walter's highly euphemistic reference to the lasting ‘lack of understanding’ for people with disabilities has to be noted here. Children with disabilities and their parents in both German states, despite the official calls for solidarity and promises of rehabilitation, often still faced severe discrimination in the 1970s and 1980s. In West Germany, sociographical studies showed that a vast majority of the population favoured the education of people with mental disabilities in remote residential institutions.
68
Likewise, Gisela Helwig, editor of the journal Deutschland Archiv, which researched East Germany from a West German perspective, noted a 1975 survey of disabled adolescents aged 12 to 13 that had been conducted by the East German pedagogical journal Elternhaus und Schule. The survey stressed that most of these children had almost no contact with other (non-disabled) children in their neighbourhood. Helwig also quoted from letters to the editors of East German newspapers and magazines that underscored the enduring prejudices against the inclusion of people with disabilities. One East German parent of a non-disabled girl contacted the women's magazine Für Dich: In the day care (Kinderkrippe) that our daughter visits, 15 disabled boys and girls will soon be added as a separate group. Isn't it possible that the normal children might copy [their] negative behaviour – e.g. grimacing and the like?
69
This enduring discrimination and the state's inadequate reaction that further burdened mothers 70 increased the parental urge to meet with fellow parents. In the West, this had long been possible within the Elternvereine. The organisational landscape of the East German dictatorship did not allow for any comparable organisations apart from small discussion groups. Self-organisation of people with disabilities or their kin on a sizable or even republic-wide scale was only possible in a few state- and party-affiliated associations for physically and sensory impaired people. 71 People with disabilities and their families thus had only limited means in the GDR to gather and represent their interests. During the 1970s and 1980s, the Protestant Church provided the necessary infrastructure for parents to meet. That parents turned to the Church was by no means coincidental. Over the course of the GDR, institutions of the Protestant Church remained partners of households with disabled children. While churches did not offer distinct financial programmes, many institutions for people with disabilities were in the hands of the church-affiliated Protestant charitable organisation Diakonie. While organised church life was under scrutiny from socialist authorities and ideologically discredited particularly in the early GDR, individual church-affiliated hospitals and institutions later had a good reputation within East Germany. 72
Diakonie departments helped people with disabilities or parents of disabled children throughout the GDR to find people with similar problems and interests. They provided occasions for parents to come together, share experiences and support one another. Direct church involvement could vary: it could come in the form of ‘merely’ providing the rooms for meetings and being an implicit shield against negative state intervention, without any direct input into the group's work or the necessity of any kind of religious element. However, the Diakonie also directly initiated and ran group services for people with disabilities or parents of disabled children. Material from a Diakonie parent group that formed in rural Mecklenburg-Vorpommern in November 1979 shows that one of the major aims of these groups was direct exchange between parents. Getting to know each other and becoming acquainted with the experiences of fellow parents within the seminar group can be identified as a theme for a recurring series of Diakonie seminars organised by the same woman each time. An invitation to spend an evening together with other parents in April 1987 reads: There are some parents among us who have not yet talked about their children and their stories of living with them. You will recall how impressive and important it is for our group to know more about one another and also learn from one another. So I want to ask the parents of whose children we still know only little to tell us about them. If anyone has photos, please bring them along.
73
Parental meetings emerged as a form of support and learning opportunity across the GDR but they never acted as coherent lobby groups like the West German Elternvereine. The reason for the new popularity of Diakonie parents-groups were manifold. Many parents in the GDR felt insufficiently informed about various forms of child disabilities and how to handle them. In the FRG, Elternvereine spread information during their frequent local committee meetings or via their journals (Verbandszeitschriften). 74 In the East, the state's and experts’ attempts to inform and educate parents were often deemed insufficient, West German pedagogical literature remained largely unavailable, and experience reports by parents were scarce and only published from the late 1970s onwards. 75 One recurrent topic in the meetings was how and where to get access to state benefits. Making contact with other parents in similar circumstances could thus be an eye-opening experience for East German parents of disabled children, making them realise that others faced similar challenges and struggles. Not unlike West Germany, this was particularly true for parents of children with highly marginalised or stigmatised forms of disability such as cognitive and complex disorders, or multiple disabilities like deaf and blind children.
Topics of the aforementioned group in Mecklenburg-Vorpommern included psychological questions of trusting one's child, organising family and working life, and ideas for everyday activities such as tying shoes or buttoning up clothes. One permanent fear of parents of children with disabilities that could be discussed in seminars such as this was also the question of what would happen to their children after their own death.
Unlike West German Vereine, however, and although fathers or husbands appeared at some of the meetings, the majority of participants in church seminars remained mothers. Similarly, while both mothers and fathers took part in church seminars, the archived material often reveals particular seminar meetings or events that were specifically tailored for and addressed to mothers – whereas none for fathers can be found. Within church seminars, East German parents occasionally began to question expert authority, although on a small scale and only in individual cases. 76 Overall, the Diakonie church seminars were rather like self-help meetings, as opposed to the West German parent groups, which also functioned as pressure groups. Although small independent and rather vocal and activist groups of parents began to form in the GDR in the late 1980s, 77 lobbying for a disabled child mostly remained an individual affair in East Germany.
Conclusion
Living with a disabled child challenged established household routines and expectations on both sides of the inner-German border. The core problems were the increased care work (for mothers and other female relatives); the poor Kindergarten and special school infrastructures, which threatened established daily routines; and the high expense of therapies and rehabilitative measures, which put pressure on household finances. Overall, the lived realities of the households under study in East and West Germany remained marked by similar challenges. Until the early 1960s, caring for a child with a disability threatened hegemonic family ideals in both German states, either the heteronormative model of a male provider and female caregiver or the socialist family with a wage-earning father and mother. In the decades after World War II, a significant portion of the population in the GDR and the FRG subscribed to eugenic notions, which often rendered disability a taboo topic. Therefore, in both German states, contrary to established narratives of family history, the immediate post-war period cannot be regarded as a phase of (re)establishing a family life according to traditional norms for these households, as any domestic existence with a disabled child seemed precarious or even impossible.
From the later 1950s and early 1960s onwards, caregivers protested against poor infrastructure and meagre financial support in both the GDR and the FRG. However, it was the avenues that were open to caregivers for protesting that diverged. In the West, parent associations for children with various disabilities were established and later challenged by vocal self-advocating disability activists. These parent organisations successfully lobbied for better special educational infrastructure. Such associations were not feasible in the socialist dictatorship. In the East, protesting mostly remained an individual endeavour. Knowing that the state was keen for the approval of its populace, parents tested the limits of the state's willingness to accommodate their wishes.
When compared to related areas of East German welfare, this finding is remarkable. In her article ‘Power and Society in the GDR Reconsidered’, Stefanie Coché researched early-GDR psychiatry, a domain which, like the infrastructure for families raising disabled children, was underfunded. Coché's finding that the GDR's leadership wilfully neglected psychiatry challenges the vision of the SED regime as a hyper-interventionist state, a notion that underpins the concepts of durchherrschte Gesellschaft and Fürsorgediktatur. Psychiatric commitments were often the result of negotiations between families and doctors. 78 A similar observation can be made with regard to the Worker's and Peasant's state's lack of support for families with disabled children. This area was likewise neglected by the state and later left to church initiatives. 79 However, Coché's second point – that psychiatric admissions were vergesellschaftet 80 in the sense that neglected state responsibilities were delegated to social units (e.g. families) – cannot be unequivocally transferred to families with disabled children. Fearing large-scale private self-advocacy, the SED remained sceptical of allowing parents or people with disabilities to organise. 81
Rather, one might reformulate an argument made by the disability historian Monika Baár. In a 2015 article, Baár called for revisiting the concept of civil society with regard to people with disabilities during the Cold War. Highlighting the similarities, rather than the differences, in the living conditions of disabled people across the Iron Curtain, Baár argues that a main difference remained the avenues that were open to disabled people to protest in socialist and in Western societies. Contrasting with organised public engagement for instance by Western European disability movements, Baár highlights ‘less visible, but equally important strategies’ in Eastern Europe, employed on the local level by (individual) members of the general public. 82 My analysis indicates that the same argument could also be made for the relatives of people with disabilities, which again highlights that ‘disability’ has to be understood as a complex social category that not only affects people with disabilities themselves but also their immediate kin. 83
Nevertheless, this finding of a functional equivalency of Eingaben and Vereine should not veil the diverging impact of East and West German lobby work. By creatively using the GDR's emancipatory rhetoric for their own goals, as many citizens did, 84 East German caregivers may have been more successful than the West German Vereine, but only in one specific sense: as West German parent organisations publicly lobbied for improvements for all children with a specific type of disability, they targeted (infra-)structural measures, for example, the expansion of day care facilities across the nation. Even if implemented, such structural improvements did not necessarily solve the logistical problems of every individual household. In their Eingaben correspondences, however, East German parents were often able to achieve individual solutions tailored to their respective needs. 85 Only in the later decades of the GDR did social formations such as church seminars and expert groups become relevant players that encouraged parents to demand structural reforms when interacting with the state. These associations, however, never reached the cohesion (nor the impact) of the parents’ associations in West Germany.
During the unification period, it became apparent that East and West German rehabilitative systems had developed in fundamentally different ways. The West German media styled the persistence of segregating Heime and the virtual absence of integrative education in the GDR as symptoms of socialist cold-heartedness. 86 However, the notion that pervaded the West German media at the time, namely that disabled children were ‘forgotten’ in the GDR, does not stand the test of historical scholarship. Individual caregivers were often successful in improving the entire family's situation. However, their successes remained individual and never had the structural impact of parental lobby successes in West Germany.
