Disability, socialism and autonomy in the 1970s: case studies from Denmark, Sweden and the United Kingdom

Abstract

In the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between ‘impairment’ and ‘disability’. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life.

Points of interest

• In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability.

• This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people.

• Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom.

• The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all.

Keywords:

• Disability
• sexuality
• United Kingdom
• 1970s
• Scandinavia
• gender

Introduction

In the 1970s, new disability movements in many countries redefined disability. In doing so, they made it possible for disabled people to present their demands in radically new ways and achieve greater independence, agency and respect. The new disability rights groups varied in structure and origins, but by and large shared the same aims. This article will study radical disability groups in 1970s Denmark and Sweden, and compare them to movements in the United Kingdom, in terms of their methods, aims and methodology.

The new movements often used innovative methods to get their message through, like in the following example of how language and artistic performance could be used to provoke and challenge received assumptions. In 1981, a recently founded group of disabled artists, the ‘Aarhus Crutch Ensemble’, was invited by Danish National Radio to celebrate the International Year of Disabled Persons. Contrary to what the producers had expected, however, the Ensemble was fiercely critical. The following text is an English interpretation of one of their songs, published with the permission of all four group members (all song texts are the author’s own English interpretation of the original lyrics; for the benefit of readers who understand Danish, the original texts are published in the endnotes):

We’ve come from a place you forgot,

we’ve come to honour the Year.

We now owe you thanks for the alms

you gave to us wretches, that’s clear.

We thank you so much, the mad and the lame

– there are many like us in the game –

we bring you indeed our most genuine thanks

for the Great Disability Year.

We roamed and we begged for hundreds of years,

then crammed in the poor house, where

vagabonds, bastards, imbeciles, cripples galore,

and elderly silently died in despair.

We’re told work is ennobling and want doesn’t hurt you,

we learned a good share of humble folks’ virtue.

So we clap and we cheer

for the Great Disability Year.¹

After the show, when the group was asked why they were ridiculing the International Year of Disabled Persons they explained: ‘We don’t like the idea of arranging a Disability Year. As if this would be the only year you think about us and do something for us – as long as it lasts. […] For us it’s disability year every year!’ (ÅST, 18 February 1981).

The aim of this article is to compare how left-wing disability organisations in Denmark and Sweden in the 1970s dealt with questions of social change, sexuality, gender and autonomy. The analysis relies on membership publications from the 1970s and 1980s, interviews with centrally placed activists and material from their personal archives. For the sake of comparison, documents from the British Union of the Physically Impaired Against Segregation (UPIAS) will also be analysed.

In the 1970s, the western world saw the emergence of a reinvigorated socialist left, a radicalised women’s movement and an active gay and lesbian movement, but political and moral discourses differed from country to country. Denmark and Sweden both had strong social-democratic parties and universal welfare programmes, while Britain experienced a more liberal political development after the war (Esping-Andersen 1990). Also, the ‘normalisation principle’ was strong in Scandinavia since the 1950s, resulting in an early and far-reaching de-institutionalisation of disabled people that culminated in the 1970s (Nirje 1999; Kirkebæk 2001). Finally, strong sex reform movements had influenced public debates on sexuality in Scandinavia since the 1930s, while sex was rarely discussed publicly in Britain. In all three countries, however, the new disability movements reformulated the concept of disability (Berg 2005; Kirkebæk 2013). How did that process vary between national contexts? What influence did general leftist debates have on the new disability movements? Four specific research questions have been identified: what were the core elements of the new movements’ political analysis; how did the new movements relate to sexuality; how did they relate to gender and feminism; and how did they relate to non-disabled allies?

The first question deals with the very basis of the new groups’ ideology. The new conceptualisations of disability relied on a materialist analysis, according to which disability is produced by society. How, then, did the new groups formulate their critique of an oppressive society and of market economy? The second question highlights sexuality. In Scandinavia, sexual liberation was intensely discussed from the 1960s, also in the context of disability (Kulick and Rydström 2015). But to what extent was sexuality an issue for the new left-wing disability movements? The third question examines the new movements’ relationship to 1970s second-wave feminism. Were they influenced by feminist thought and were they aware of gender issues? The fourth question investigates the separatist component. Did the new movements allow non-disabled allies to join their ranks, and if so, in what capacity?

Previous research

Book-length studies of disability and sexuality are preciously few on both sides of the Atlantic. Apart from Loneliness and its Opposite (Kulick and Rydström 2015), there are only a few works published. Shakespeare, Gillespie-Sells, and Davies’ (1996) Sexual Politics of Disability still stands out as one of a kind. For the first time, a sociological study dealt with the sexuality of disabled people and identified problems and potentials in the area. Since then, however, only a limited number of anthologies on sexuality and disability have appeared: Queer Crips (Guter and Killacky 2004); and two collections with the same title, Sex and Disability (Shuttleworth and Sanders 2010; McRuer and Mollow 2012). The first is a collection of life stories of gay men with disability, while the other two are more ambitious, containing scholarly papers on sexuality. Sociologist Julia Bahner has investigated how personal assistants in Sweden deal with the sexual needs of disabled people, and she has also analysed how Crip Theory could be used for developing sex education for young people with mobility impairments (Bahner 2012, 2015, 2016, 2018). Apart from these contributions, there is a limited, but growing, number of articles discussing various aspects of disability and sexuality (for example, Earle 1999; Shakespeare 2000; Sanders 2007; Fritsch et al. 2016; Vehmas 2019), but it is still fair to say that this field is sadly under-researched.

In Britain, a substantial body of research has analysed the social model and the concept of disability since the 1980s. Most of these studies are written by social scientists with personal experiences of disability. Oliver’s (1990) classical Politics of Disablement summed up two decades of theorising the concepts of disablement and impairment. Together with Disabled People in Britain (Barnes 1991) and Disability Politics (Campbell and Oliver 1996), it has laid out the history and basic principles of the social model. Finally, Swedish disability activist Susanne Berg (2005) has compared the British social model and the Nordic relational model, arguing that the Nordic model upholds the causal link between impairment and disability, which results in diverging politics.

In the United States, Simi Linton’s (1998a) Claiming Disability from early on established the need for disability studies in universities, while philosopher Susan Wendell (1996) provided a feminist perspective and a phenomenological approach. Later on, scholars from the humanities, like Carrie Sandahl (2003) and Robert McRuer (2006), developed crip theory and provided valuable insights concerning representations of disability and ableist presumptions in majority culture. An original scholar like Alison Kafer (2013) has theorised crip temporality, drawing on earlier studies of queer temporality and futurority. Shildrick (2009) is an exception to the general focus on social science in the United Kingdom. She has developed Critical Disability Studies as a ‘Postconventional’ alternative to the social model, using discourse analysis and phenomenological methods to raise other problems. Over the past decades, Shakespeare (2013) has challenged the social model, but from a critical realist perspective. Towards the end of the 1990s, Disability & Society opened its columns for debates about the social model and alternative ways to analyse disability (Gleeson 1997; Shakespeare and Watson 1997; Linton 1998b; Barnes 1999; Tregaskis 2002). In Scandinavia, Söder (1980), Grönvik (2007) and Kirkebæk (2013) have been influential in defining and redefining the concept of disability.

Marxism and disability in Sweden

Vilhelm Ekensteen is indisputably one of the most influential disability activists in Sweden. Ever since he published his pioneering In the Backyard of the People’s Home (På folkhemmets bakgård) in 1968, he has occupied a central place in all debates about disability, personal assistance and autonomy in the country. He founded the group ‘Anti-Handikapp’ in 1969, and from the beginning of the 1980s he has been active within the national disability organisation DHR. Since 1994, he has chaired the Swedish Assistance Users’ Interest Group (Intresseorganisationen för Assistansberättigade).

Ekensteen’s (1968) book was the first Swedish publication to develop a modern disability-rights criticism of society. Alluding to the most common metaphor for the Swedish Welfare State, he argued that, despite its promises, the People’s Home did not have room for all. Instead, it displayed a general lack of accessibility and authoritarian attitudes. Disabled people suffered from forced isolation, largely due to half-hearted attempts to ‘normalise’ their lives. Too little was offered to too few, only to mitigate the givers’ feelings of guilt. In a sharp and polemic language, Ekensteen condemned the ‘conditioned care’ (1968, 23) that society had to offer, and he loathed being relegated to the subordinate role reserved for people like him.

The word ‘handicapped’ should be used to describe people with physical impairments, Ekensteen argued, since it was ‘so established and also so free from any trace of negative values’ (1968, 31–32). At this early stage, he did not make a distinction between impairment and disability, which would later become a basic principle for his thinking. One chapter was dedicated to ‘The Sexual Question’, which was unusual at the time and indicated that he saw it as an important issue. In the chapter, he acknowledged the increasingly liberal attitudes towards sexuality, even if he dismissed some ‘exceptional cases, when it derails and gets an overtone of Sadian philosophy, characterised by extreme individualism’ (1968, 49). A more serious problem than individualism, however, was the general reticence that surrounded all forms of sexuality. Exaggerated fears of promiscuity had resulted in schools’ teaching that sexual activities must be ‘part of a deep and extended community between two human beings’ and not ‘a phenomenon valuable in itself’ (1968, 50 and 51). This led to ‘feelings of guilt and shame’ among many isolated disabled people (1968, 51). Ekensteen warned, however, that sexuality must not become the most important question. Sexual circumstances cannot improve unless material conditions change, and there was a risk that there would be a tendency ‘to over-emphasise the sexual aspects, which will obscure other, often much more important issues’ (1968, 54).

Ekensteen also criticised the established disability movement, especially the Swedish National Union of the Handicapped (De Handikappades Riksförbund [DHR]) founded in 1923 by Anna Vogel, the non-disabled director of Gothenburg’s School for Cripples. She resigned in 1935 to give way to a disabled man, but after 20 years with disabled chairs, the DHR in 1955 again elected a non-disabled person to lead it, this time a Member of Parliament. When Ekensteen published his book in 1968, the DHR, for the third time in a row, had elected a non-disabled Member of Parliament as its chair (Berg 2007). Ekensteen criticised the fact that not only the DHR but also other disability organisations had non-disabled leaders. Instead, disabled people must take their fate into their own hands. Existing disability organisations should work together for well-defined political goals, but they also must improve their activities, because their meetings were designed for their aging leaders, with coffee drinking and small talk. The young and those with intellectual interests could not feel at ease there, Ekensteen wrote. Instead, there was a need for an entirely new kind of disability movement.

Ekensteen envisaged an ideologically coherent activist-based organisation whose main purpose would be ‘to break the isolation of the handicapped, do away with their loneliness, save them from intellectual barrenness and a life-long unbroken dreariness’ (1968, 66). It should recruit members ‘among handicapped and non-handicapped people who are non-authoritarian and who critically can scrutinise also their own convictions’ (1968, 66–67). The organisation should have a highly flexible structure and consist of smaller working groups. In the wake of the debate about Ekensteen’s book, many people joined the movement and settled for the name ‘Anti-Handikapp’, establishing that ‘handicap’ was a social construct that must and could be fought. On 14 April 1970, they staged a protest in Lund, adorning inaccessible buildings with Anti-Handicap stickers. The action became much bigger than the activists had hoped for and later the same day, a similar demonstration was organised in Stockholm (AHB, no. 1, 1970).

In the first issue of its journal, the A.H. Bulletin, the new group stated the grounds for its analysis: ‘The A.H. departs from a definition of the handicap as a social and not physical problem’ (AHB, no. 1, 1970, 7; emphasis in original). Moreover, it developed what the idea of disability as a social construct meant for the individual:

Segregation implies that people’s differences are accentuated and become social and individual disabilities. For instance, a physical impairment (fysiskt funktionshinder) may thus be transformed from a physical difference or characteristic into a social impairment (socialt funktionshinder) and a social disability (socialt handikapp), which in turn will transform the impairment/characteristic/difference into a physical disability (fysiskt handikapp) resulting in total identification of the person as ‘disabled’ (handikappad) – something which could have been avoided if the physical impairment had not also become a social impairment. (AHB, no. 1, 1970, 5)

There was still a slight vacillation between ‘impairment’ and ‘disability’ at this point, but in due time the A.H. Bulletin would argue more consistently for a terminology reform, and actually succeeded in changing general usage in just a few years. In Swedish, the established term handikapp (handicap) henceforth meant social and physical obstacles in society, while a new word, funktionshinder (functional impediment), designated an individual physical or intellectual impairment. Since 2007, however, official terminology has changed. Impairment is now called ‘funktionsnedsättning’ (functional reduction) and disability is called ‘funktionshinder’ (functional impediment) (Socialstyrelsen 2007).

The 1970s linguistic reform in Sweden parallels the one that took place in the United Kingdom at the same time, but occurred independently of that. On one occasion, Swedish disability researcher Mårten Söder told Ekensteen that ‘what you say is exactly as if it were Mike Oliver speaking’, although at that time Ekensteen was unaware of Oliver’s existence. When interviewed in 2017, Ekensteen said this ‘confirms that the thinking comes from the structures’ (interview, Ekensteen and Wickenberg, 2017).

The A.H. Bulletin soon became a forum for discussions about disability issues like bad transport, discrimination on the work market and the harmful effects of charity. In his book, Ekensteen had been only vaguely socialist; however, in the columns of the A.H. Bulletin, he and the other activists developed a more consistent Marxist understanding of disability. The main cause for segregation, they argued, was capitalism. In a polemic in DHR’s publication, Ekensteen clarified Anti-Handikapp’s position:

The transition to a genuinely democratic society, i.e. ruled by the people, is necessary in order to make at all possible the integration of the so-called disabled into society. [—] Therefore the Anti-Handikapp demands that the power over and in working life must be transferred to the working people and to those who are now excluded from the work market. (SHT, no. 10, 1972, 31)

The A.H. Bulletin argued that in a profit-hungry economy, workers were maimed by the demands of productivity and that ‘[m]ore and more people are excluded from work life, because they are no longer profitable for the capitalists’. Furthermore, the pace of work was constantly accelerating for those still in production, so that they quickly became worn out (AHB, no. 4, 1972, 3).

The Anti-Handikapp movement was thus strongly committed to political change, but it was not very interested in discussing sex. The only article about sexuality in the A.H. Bulletin during its 10 years of existence was a review of Gunnel Enby’s Let There Be Love (Enby 1972, 1975). Enby, a poliomyelitis survivor, wrote about the humiliation of coming of age in a clinic, and especially the lack of privacy, arguing that the solution was in reality very simple: ‘All that is needed is a private room with a key and the right to be alone with a visitor’ (1975, 60). The A.H. Bulletin conceded that Enby’s book had many merits, but argued that it was insufficient just to demand privacy: ‘To remedy the flaws of the institutions is no real solution’, it wrote, and concluded that the institutions as such must be abolished. What was really needed was a ‘society in which each individual is valued equally high and where people and not profits are in the centre’ (AHB, no. 1/2, 1973, 21). Although Anti-Handikapp had little interest in sexuality, however, this was not necessarily true of the rest of the Swedish disability movement. For instance, DHR’s journal, the Swedish Handicap Journal, frequently dealt with relationships and sexuality, at least since 1972, when Enby was engaged as a columnist (SHT, no. 3, 1972, 14).

The Anti-Handikapp movement did not discuss feminism either, even though its membership displayed an equal gender balance (Anti-Handikapp 1969). Despite the gender balance, the A.H. Bulletin never debated gender issues or disabled women’s experiences. There was a majority of able-bodied allies, but the presence of non-disabled members did not seem to create tension (AHB, no. 1, 1970, 4). Many of the non-disabled activists were professionals working with disabled people; others had disabled relatives or loved ones. Per Wickenberg, one of its most active members, joined because he was writing a bachelor’s thesis on a disability-related topic. When interviewed together with Ekensteen, he could not remember any discussions questioning the presence of non-disabled people in the group. ‘It was a movement carried by ideas and solidarity’, he said: ‘We referred to our membership cards as Solidarity Cards’. Ekensteen concurred, pointing out that there was much less discussion about non-disabled allies in Anti-Handikapp than in the DHR. Nevertheless, he underlined the primacy of the disabled members: ‘It was never questioned that the voice of the disabled was the decisive voice’ (interview, Ekensteen and Wickenberg, 2017).

Anti-Handikapp ‘was a liberation movement’, Ekensteen wrote much later: ‘It was an escape from the narrow, demeaning handicap identity as a more or less powerless object for caregivers’ (Ekensteen 1990, 104 and 106). During its 10 years of existence, the Anti-Handikapp exerted a remarkable influence on disability politics and the mainstream movement. For a long time, the DHR had depended on regular charity campaigns for a large part of its budget, but in the 1970s it, too, began questioning philanthropy. From this time, the DHR would participate in direct-action campaigns against inaccessible trains and buses, and eventually gave up charity as a source of income. Finally, in connection with Anti-Handikapp’s 10-year anniversary in 1979, Ekensteen described the radicalisation of the established disability movement as one of the most significant results of Anti-Handikapp’s activities: ‘Today you cannot talk about an antagonistic relationship between the disability movement and Anti-Handikapp like you could in 1969–70. Instead, it is correct to say that the A.H. is a socialist voice in a broad disability opinion’ (AHB, no. 18, 1979, 3/4). Two years later, Ekensteen was elected to the board of the DHR.

Sex, Marxism and disability in Denmark

The Danish socialist disability movement differed considerably from its Swedish counterpart. The Youth Circle (Ungdomskredsen) of the National Association of Cripples (Landsforeningen af Vanføre) was a lively forum for political discussion, and in 1976 it began publishing its own journal, Handi-Kamp. The driving force during the first few years was Jan Jakobsen, who later joined the Danish Communist Party (interview, Barsøe, 2016). In 1976, he wrote an article for Handi-Kamp about disabled people in the production system. It was in the wake of the 1973 Oil Crisis when unemployment was soaring, and Jakobsen described how many disabled persons felt their whole situation was deteriorating:

The more so if you take into account the ideas of more ‘humane attitudes’ that were around in the sixties, when there was more oil in the social machinery and a certain surplus that you could afford to spend on people whom you would hardly give a thought otherwise. (HK, no. 4, 1976, 9)

This, Jakobsen explained, was a result of the mechanisms of capitalism. After a short explication of Marx’s theory of surplus value, he went on to discuss the present-day situation. In periods of crisis, employers needed to increase their profit rate to be able to invest in new machinery, he wrote, but the only way to do so was to increase the workload per worker and speed up production:

Having used up the reserve that women could offer, [the employers] grasped the last resort and involved disabled people and other ‘marginalised groups.’ [–] They did this knowing that they could send this reserve back home with thanks for the loan once the adventure was over. (HK, no. 4, 1976, 10)

One cannot ask for a clearer Marxist analysis of disabled people’s role in an exploitative capitalist economy. Of the organisations under study here, the Danish journal Handi-Kamp was surely the most outspokenly Marxist, at least in its beginning.

Capitalism, Handi-Kamp argued, produced cripples in two ways. Just as the Swedish group, it claimed that profit hunger put workers at risk, and that many people were injured as the production process accelerated and security measures were neglected. Secondly, capitalism reduced people to factors of production and attributed productive value only to those who had relevant resources – the rich and the healthy. Investments in care and accessibility were only made to the extent that they could generate profit, otherwise charity was expected to take care of it (HK, no. 4, 1976, 9). Handi-Kamp’s political analysis was thus exactly the same as the Swedish activists had presented in the A.H. Bulletin a couple of years earlier and the Danes equally argued for a complete remodelling of society.

In March 1977, local Youth Circles campaigned against inaccessible buildings all over Denmark, just as Anti-Handikapp had done in Sweden, causing some local businessmen to complain that they could not help that their shops were located in old buildings. Nonetheless, the most violent reaction came from the Youth Circle’s mother organisation, which threatened to expel its national chair (HK, no. 7, 1977). In connection with this conflict, many local branches of the Youth Circle left the mother organisation and instead created the independent network ‘Handi-Kamp’ (interview, Barsøe, 2016).

In contrast to the Swedish group, however, the Danes frequently discussed and analysed sex in society. During its 13 years of existence, Handi-Kamp published no less than 10 special issues on sexuality. In the first special issue, its editor Lone Barsøe situated sexuality firmly in an economic structure by pointing out that each individual’s rights ‘also to sexual fulfilment’ were determined by their market value (HK, no. 22, 1979, 2). In addition, the fact that many disabled people were hidden away in institutions underpinned commercial beauty ideals, she wrote, since the majority were never confronted with bodies that deviated from the norm (HK, no. 22, 1979, 3/4).

Lone Barsøe was one of Handi-Kamp’s leading activists. Born in 1956, she first became involved in the National Association of Cripples in 1978, and for more than 20 years she was responsible for courses and education. Until her retirement in 2017, she worked as a teacher and consultant at a college specialising in integrated courses for people regardless of impairment. Throughout her career, she promoted questions of sexuality and was one of the first to notice the parallels between the gay and the disability struggles. In May 1980, Handi-Kamp organised a weekend on sex and love, and invited two men from the Gay Liberation Front (Bøssernes Befrielses Front). The reason for this, Barsøe explained, apart from the fact that some of the Youth Circle’s members might be gay, was that gay people’s experiences fighting for their rights and being oppressed in an anti-gay society in many ways resembled the situation of disabled people (HK, no. 32, 1980, 2).

In particular, it was the ways in which gay activists were forging a positive, proud identity that inspired the Handi-Kamp activists. They argued that the disability movement could learn from this and that it resonated with the fight against charity and subordination. Language was an important political tool, Barsøe wrote, describing how gay men and lesbians were using language to challenge ruling norms. Just as they said ‘Gay is Good’ (‘Det er skønt at være bøsse’), there were disabled people who said ‘Flaccid is Fine’ (‘Det er smukt at være slap’) (HK, no. 33, 1980, 5). The Danes thus saw language as an instrument for change, but unlike the Swedes they did not invent new words to underline that disability was a social construct. They would rather endorse the use of pejorative words, both as a provocation and as a way of making the words less offensive. For instance, a network of women described themselves as ‘clammy women’ (‘klamme kvinder’) as they worked for a feminist disability agenda (HK, no. 39, 1981, 2). In Denmark, directness in language is generally appreciated, which may also explain why words like ‘handicap’ and ‘spastic’ are used in everyday language, and why the Danish Association for People with Restricted Growth (Landsforeningen for væksthæmmede) changed its name to the Dwarf Association (Dværgeforeningen) in 2007. After a membership vote, the Association declared that ‘we think of ourselves and talk about ourselves as dwarfs (dværge) and we’re comfortable with that’. Furthermore, it explained, the organisation’s new name could ‘contribute to the breaking down of taboos and create a better understanding’ (Dværgeforeningen 2007; Kulick 2014).

This strategy harks back to old political discussions in both the gay and the disability movements. Already in 1935, a member of the then ‘Danish National Association of the Crippled and the Maimed’ argued to keep the unembellished name of the Association: ‘It is stupid to cover over harsh facts with obscure words when you have given yourself the task to draw these very facts out into the light and improve them’, he wrote (Vbl., no. 3, 1935, 38). In a similar vein, Danish and Swedish gay activists appropriated the word ‘faggot’ in the 1970s (Danish: ‘bøsse’, Swedish: ‘bög’), much like lesbians and gays in the United States would later adopt the word ‘queer’ or disabled people ‘crip’ (Jagose 1996; Lindholm and Nilsson 2002; McRuer 2006). In Sweden, however, the tradition of using direct language among disabled people is not as strong and linguistic considerations rather resemble those in Anglo-Saxon countries (Rydström 2019).

In Danish Handi-Kamp, questions of gender and sexuality often merged. In a thoughtful article in 1981, Lone Barsøe wrote about love and friendship. She had come to realise that her friendship with non-disabled men often relied on her being disabled:

I think that what the guys liked in me were qualities that were defined by their own expectations of the male sex, like a sense of perspective, ‘strength’ and humour. All this, combined with traditionally female sensitivity and some extra energy to listen to and talk about their problems. (HK, no. 39, 1981, 7)

It was perhaps similar, in some ways, to the relationship between a straight guy and his lesbian friend, she argued. Even though she valued being seen as someone who had something important to say, she resented being used as a de-sexed counsellor by her male non-disabled friends (HK, no. 39 1981, 7). As we will see, sexuality and inter-personal relations were not just major themes in Handi-Kamp’s internal discussions, they were also brought forward by the Aarhus Crutch Ensemble.

In December 1984, the Ensemble performed in a residential unit on the island of Bornholm. It was a lively scene: wheelchairs and walkers were crammed into the space as the residents took their places. Many of the spectators had already heard the group on national radio and it was evident from their murmuring conversations that they had high expectations. Staff members seemed more hesitant, standing behind the seated audience as if watching over them (BH, 11 December 1984; interview, Barsøe, 2016). Four people entered the stage. Two of them, Lone Barsøe and Hanne Klitgaard, had visible physical impairments, while the other two, Bodil Jørgensen and Ole Toftdal, joined the group as able-bodied allies. Ole Toftdal struck a chord on the piano and, in a rhythmic chant, two of the other actors began imitating commercial messages:

Are your sexual needs slightly tame?

You’ll feel much safer with a lame!

–

Why then settle for just one?

Schizophrenics are much more fun!²

As the show went on, the applause and roaring laughter of the disabled audience became louder and increasingly enthusiastic, while the staff members seemed uncomfortable. After a while, some of them left the room, although at this point the violent slogans had given way to romantic ballads. Right at the end, Hanne Klitgaard and Ole Toftdal entered the stage and sang a gentle duet about love, accompanied by Ole’s soft-strung guitar:

While my rear wheel’s still steaming

from the heat of the dance

I want to loosen your corset’s strings

and hold you in my arms.

We feed from the night, go to bed when we please,

I’ll caress all your humps – you’re my Venus.

You give me life – from body and soul,

a love that never ends.

Outside the moon lights up the night,

as we travel through, body and soul.

You’re the one I love, oh give me strength,

you are so very beautiful …³

The Crutch Ensemble toured Denmark and appeared on national radio and television between 1980 and 1991. It always mixed provocative directness and more sensitive texts about the artists’ innermost feelings. ‘It was a gift for me to be able to formulate these things in words and in song’, Barsøe later said in an interview: ‘To get it out and liberate myself from it meant a lot’. In particular, she referred to a song where Hanne Klitgaard sang about her kyphosis, about ‘her shining hump’ (‘sin pukkels glans’). ‘It takes great strength to sing that you’re not attractive – I think that’s the best proof that we were not just superficially plucky, isn’t it?’ (interview, Barsøe, 2016).

Just as the Swedes, then, Handi-Kamp was not a separatist movement; indeed, it welcomed non-disabled allies while keeping control of the organisation. Disabled members wrote all of the texts in its journal while non-disabled allies dealt with print and distribution. Moreover, the organisation was by no means male dominated. In fact, women took the lead when discussing sexuality to the extent that at one point its male members insisted on editing a special issue on male sexuality, lest the women monopolise the discussion (HK, no. 51, 1983). In fact, it was the only one of the groups under study that regularly discussed gender issues and the different experiences of women and men with disability.

Britain – a comparison

The comparison with the 1970s disability movements in Britain is based on disability-rights activist Paul Hunt’s (1966) Stigma: The Experience of Disability and four central UPIAS documents: ‘Aims and Policy Statements’ (UPIAS 1974), ‘Fundamental Principles’ (UPIAS 1976) and two issues of its publication Disability Challenge (DC, 1981, 1983). The analysis is also informed by secondary research (Oliver 1990; Barnes 1991; Campbell and Oliver 1996; Shakespeare 2013). However limited, this material will make it possible to test the four research questions on the British movement and put the two Scandinavian groups in perspective. The comparison will reveal significant similarities, as well as differences. Nevertheless, it will show how parallel initiatives in different countries independently of each other developed similar analyses and were successful in influencing future politics.

In 1966, Paul Hunt edited the anthology Stigma: The Experience of Disability, which has been compared to Ekensteen’s book that was published two years later (Berg 2005, 35). Stigma’s 12 chapters were all written by disabled people, its implicit argument being that discussions about people with disability must be based on their own demands. Moreover, Paul Hunt argued that they had a special position in society:

[T]he problem of disability lies not only in the impairment of function and its effects on us individually, but also, more importantly, in the area of our relationship with ‘normal’ people. If everyone were disabled as we are, there would be no special situation to consider. (Hunt 1966, 146)

In his chapter, Hunt’s vocabulary was still tentative, but already at this time he saw disability as socially constructed. What Hunt did not do, however, either at this stage or later, was to formulate a comprehensive materialist criticism of the capitalist system, as Vilhelm Ekensteen and Jan Jakobsen did in their early writings. On the other hand, Berg (2005) has argued that the clearer focus of the UPIAS on disability and not on general social inequality has made the social model more efficient in its struggle for disabled people’s autonomy and rights.

Few contributions to Hunt’s anthology dealt with sexuality. Hunt himself mentioned ‘marriage and family’ (1966,145) or ‘having children’ (1966,147) as some of the ‘goods’ of a ‘normal’ and ‘full’ life, although he did not expand on this. However, Judith Thunem discussed the massive prejudice and disgust that generally surrounded disabled people’s feelings. If a disabled person would fall in love with a ‘normal member of society’, she wrote, and if that love was reciprocated, it would produce ‘social outrage’ as if the disabled person had done something indecent (Thunem 1966, 50). Love between two disabled persons was not castigated the same way, since society was not troubled: ‘A wall is raised between the “normal” world and the world of the disabled’ (1966, 51). Thunem discussed many themes that Ekensteen would also debate, although she did not treat sexuality as explicitly, probably due to differing sexual discourses in the United Kingdom and Sweden at the time. Both Hunt (1966) and Ekensteen (1968) introduced new ways of defining disability, although the sharp criticism of capitalism that Ekensteen presented had yet to wait to become part of the British discourse. Neither Hunt nor Ekensteen specifically discussed gender issues.

In 1972, Hunt wrote a letter to the Guardian, calling for a ‘consumer group’ for residents of institutions and encouraging people to contact him (Guardian, 20 September 1972). As a result, the UPIAS was founded in 1973. Its ‘Aims and Policy Statement’ argued that the ‘comparatively low productivity’ of disabled people led to ‘low bargaining power’ on the job market and in other social contexts (UPIAS 1974, 2). A more clear-cut materialist criticism of society was obviously taking shape, preparing the ground for its later Marxist analysis, more similar to the Danish and Swedish groups’ arguments (for example, Oliver 1990). Society’s attitudes to disability were marked by medical tradition, the UPIAS claimed, reducing disabled people to patients. The struggle against the rule of experts was consequently a major theme in its activism. It agreed that disabled people need assistance, but ‘[t]he efforts of professionals and other able-bodied people are […] constructive only when they build on and encourage the self-help and activity of disabled people themselves’ (UPIAS 1974, 5). In order to keep friends and experts from dominating the organisation, it offered only associate membership to able-bodied allies (1974, 7).

When sociologist Peter Townsend, leader of the Disability Alliance, asked if he could join the new group, it did not accept him and instead called for a meeting to clarify his position vis-à-vis the UPIAS ideology. The Disability Alliance insisted that the root of disabled people’s subordinate position in society was their low income level, while the UPIAS argued for a more comprehensive approach (Oliver 1990, 109; Barnes 1991, 221). This tension was later described as being between ‘the incomes and the oppression approaches to disability’ (Campbell and Oliver 1996, 55).

The meeting was held in November 1975 and was documented in a booklet (UPIAS 1976). Paul Hunt read out a written statement, defining the fundamental principles upon which the two groups must agree, namely that:

disability is a situation, caused by social conditions, which requires for its elimination, (a) that no one aspect such as incomes, mobility or institutions is treated in isolation, (b) that disabled people should, with the advice and help of others, assume control over their own lives, and (c) that professionals, experts and others who seek to help must be committed to promoting such control by disabled people. (UPIAS 1976, 3)

Two aspects dominated this declaration: that disabled people needed to free themselves from the dominance of experts and caregivers; and that emancipation required a comprehensive critique of society. This analysis resembled the Scandinavian groups’ ideology, although the emphasis was different, in that Danes and Swedes presented a more explicit critique of capitalism. Also, the ‘incomes’ versus ‘oppression’ approaches were never an issue in Scandinavia. Since the established movements in both Denmark and Sweden had a broader agenda than just incomes, the radical groups would rather criticise their reformist politics than their focus.

The argumentative methods of the UPIAS, its striving to be clear, consistent and scientific, as well as its biting polemic, were very similar to the tone used by the Scandinavian groups and many revolutionary Marxist groups of the time. UPIAS polemics, however, were mainly directed towards ‘experts’ and not society at large. De-institutionalisation was after all a key question for the UPIAS, whose activists were often living in residential units (Campbell and Oliver 1996, 54).

The UPIAS publication Disability Challenge appeared twice, in 1981 and 1983. The first issue opened with an editorial that summed up the history of the UPIAS, once again defining its main objectives (DC, 1981). Sexuality was not mentioned in the first issue, but in the second it was amply discussed. Like in the first, an editorial summed up the developments in the movement, especially the creation of the new umbrella organisation, the British Council of Organisations of Disabled People, which also included women’s groups like the Sisters Against Disability and the lesbian disability group Gemma (DC, 1983, 15). This reorganisation seemed to open up the debate also within the UPIAS. Instead of the rigid and formal discussions that had characterised the first issue, the 1983 Disability Challenge had a more open style and, for the first time, it dealt with sexuality and intimacy.

Hence, the journal reported about a disabled couple and their struggle to be allowed to live together (DC, 1983, 12) and a long article critically examined Tuppy Owens’ ‘Outsiders Club’, arguing that her initiative ‘actually furthers the oppression of physically impaired people’ (DC,1983, 42). The writer also reviewed Owens’ (1980) Take Me I’m Yours!, qualifying it as ‘a manual of rape’ and as ‘one of the most hideous pieces of writing I have ever come across’ (DC, 1983, 42–43). After mercilessly thrashing the book, she reported from a series of Outsiders Club meetings and concluded that Owens ‘does not care about the feelings of physically impaired women and is quite prepared to put them down and compete with them while also using them’. The reviewer underlined that the sexual needs of the physically impaired must be ‘met through another structure’, which is not oppressive to women nor to the disabled (DC, 1983, 45–56).

It is true that Tuppy Owens’ initiative was controversial: similar criticism against her would be published much later, in The Sexual Politics of Disability (Shakespeare, Gillespie-Sells, and Davies 1996, 126). The fact remains, however, that the only article which specifically dealt with sex that the UPIAS ever published was negative. Just like Anti-Handikapp in Sweden 10 years earlier, it reviewed a sex-positive book and found it was not addressing the core of the problem; namely, the social structures that segregated disabled people. Admittedly, Tuppy Owens’ books were by far more outrageous and provocative than Gunnel Enby’s gentle plea for privacy and certainly merited a more critical scrutiny. It is nevertheless revealing that both reviews built on the argument that mending the symptoms was useless if the social structure was oppressive.

None of the UPIAS documents discussed gender issues or the experience of disabled women. Some of the women in the UPIAS left for the Liberation Network (LNDP), a women-led, more liberal activists’ network. One woman who remained a UPIAS member later admitted that it had a ‘hard, not necessarily macho, style in terms of the political and analytical debate’ and that ‘in some senses [it] had a very typical masculine political feel to it’. On the other hand, while acknowledging the ‘sharp intellectual cutting edge’, a male member said there were strong ‘personally intensely relationships’ being formed in the Union and that the network was enormously supportive (Campbell and Oliver 1996, 66–68).

Having said this, it must be noted that gender and sexuality were discussed in other contexts. The women’s groups ‘Sisters against Disability’ and ‘Gemma’, as well as the women-led network LNDP, have already been mentioned. Also, in 1979 the feminist magazine Spare Rib published a long article about women and disability, discussing gender inequalities in the state pension scheme, disabled women’s sexuality and their relationship to the non-disabled (Briggs 1979). Finally, Jenny Morris’ (1989) Able Lives discussed women and sexuality at length. Like in Sweden, however, all of these discussions took place outside the new radical disability movements.

Conclusions

There were thus four significant differences between the movements. To begin with, their understanding of historical materialism differed. From early on, the Danish and Swedish groups displayed a fully-fledged historical-materialist critique of capitalist economy. At one point, the Swedish group even argued that the integration of disabled people was impossible without a socialist revolution and the Danish group encouraged its members to form a disabled people’s trade union to fight for their rights on the work market. These radical standpoints softened towards the end of the 1970s, as the activists became integrated in national movements, where they exerted a radicalising influence. In the early UPIAS writings, the Marxist component was weaker at first, but over time it developed a materialist way of analysing disability without explicitly adhering to Marxism. Berg has claimed that while the UPIAS continued to develop the social interpretation of disability, ‘the [Swedish] Relative Model quickly became integrated into the official disability politics of the Swedish state and annexed by the establishment’. She equally argues that the relative model did not ‘cut the causality between impairment and disability’, resulting in personal assistance being seen as ‘a form of compensation for individual incapacities’ (Berg 2005, 36 and 38).

Another significant difference between the movements concerned language. In Sweden and the United Kingdom, independently of each other, the new movements established new terminologies to indicate that disability is a social construct. This did not happen in Denmark, where activists instead developed a provocative way of using language that by and large sounds alien to English and Swedish ears. Debates in Handi-Kamp, in fact, show that the understanding of disability as a social and material construct was equally strong in Denmark and the political achievements of the Danish disability movements are no less significant than in Sweden, especially in the area of sexuality.

A third difference regards political allies. Both Danes and Swedes welcomed non-disabled members while making it clear that the disabled were in charge. The British group, however, offered only limited membership to those who did not have personal experiences of disability. The contempt for experts and well-meaning others was just as strong in Ekensteen’s book, yet his group welcomed non-disabled allies on the same conditions as disabled members. This difference can perhaps be explained by the stronger emphasis of the UPIAS on de-institutionalisation and autonomy, which in turn might be the effect of the lower rate of de-institutionalisation in the United Kingdom than in Scandinavia.

The fourth significant difference concerns how Danish activists gave priority to sexuality. It was considered equally important and indeed intertwined with the fight for living arrangements, transport, education, jobs and independence. In this regard, they differed starkly from both the Swedish and the British movements, and as a result Denmark today boasts a nationwide system for meeting the sexual needs of disabled people (Kulick and Rydström 2015). As has been mentioned, the lack of discussions in Britain might be explained by a more puritan public debate, whereas the difference between the Danish and Swedish groups must be commented on. Many researchers have noticed that Denmark contrasts with other Nordic countries when it comes to the regulation of pleasure (Nordiska Läkemedelsnämnden 1989; Holder 1998; Vallgårda 2003; Skilbrei and Holmström 2013). Thus, Danish policies on alcohol consumption, illegal drug use and sexuality are characterised by a harm-reduction perspective that tolerates deviations from the norm, while stricter zero-tolerance politics dominate in Sweden. This, in turn, has historically been explained by different historical factors such as structural differences in the seventeenth century, strong liberal currents in Denmark following the catastrophic war of 1864 or the influence of the Danish ‘cultural radicals’ in the 1930s and 1940s. Be that as it may, it is true that Sweden developed a sober and pragmatic attitude to sexuality from the 1930s, allowing for open debates and information campaigns, albeit with little room for discussing non-mainstream sexuality or disabled people’s sexuality other than in controlling and normative ways (Kulick and Rydström 2015; Kulick 2005; Lennerhed 2014).

Despite their differences, however, it is remarkable how similar the new disability groups were and how significant their contributions to disability politics would become. Regardless of variations in emphasis and tactics, they introduced new ways of thinking about disability that would allow for new disability politics and new achievements regarding independence and equality. These achievements, however, can never be taken for granted. As this article is being written, a Swedish Government Commission has recently presented a report with the explicit aim to cut costs for personal assistance (LSS-utredningen 2018). Prejudice, fear and condescending attitudes prevail. The autonomy, mobility and dignity of disabled people are under constant pressure and must be defended by an active disability movement.

Acknowledgements

The research on Denmark and Sweden was funded by the Swedish Research Council and conducted together with Don Kulick while preparing Loneliness and its Opposite (Kulick and Rydström 2015). While emanating from the same project, the article will bring up questions not previously discussed and analyse new material. The author thanks the anonymous reviewers of Disability & Society for constructive remarks and Nikolas Glover for suggesting improvements in the English interpretation of the song texts.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

Vetenskapsrådet.

Notes

1 ‘Vi er kommet hertil fra det sted I har glemt / og står her til ære for året. / Ja, vi burde vel takke for skærven I gav / til os stakler som plaster på såret. / Åh, vi takker så meget både sindssyg og halt / vi er mange når først vi er talt / til at sige jer inderlig tak / for handicapåret. // Og der gik vi og tigged’ i hundrede år / til på fattiggården vi røg. / Vagabonder, horeunger, tosser, krøblinger i flæng / Gamle folk der låg og døde uden støj. / Vi fik lært at arbejde adler, nød forventningens fryd /samt en god portion borgerlig dyd. / Vi vil derfor råbe hurra / for handicapåret’ (‘Tekster diverse. Krykensemblen’, Lone Barsøe’s Private Archive (LBA). All lyrics are published with the written permission of Lone Barsøe, Bodil Jørgensen, Hanne Klitgaard and Ole Toftdal.)

2 ‘Er Deres sexualitet lidt tam? // Løber de ingen risiko med en lam. [–] Og har de lidt svært ved at nøjes med een? // så er sagen – en skizofren’ (‘Tekster diverse’, Krykensemblen, LBA).

3 ‘Mens baghjulet stadig // damper af dansens varme // vil jeg løse korsettets bånd // og holde dig i mine arme. // Vi spiser af natten, går med tiden i seng // og jeg favner alle puklerne – Du er min Venus // Du skænker mig – liv fra sjæl og krop // en kærlighed, der aldrig hører op // Udenfor lyser månen natten op // vi var på rejse i sjæl og krop // du er den jeg elsker, gi’ mig styrke nu // smukkere end smukkest er du’ (‘Tekster seksualitet’, Krykensemblen, LBA).