Women with learning disabilities are known to be one of the most excluded groups in society, and often remain largely invisible in their local communities (Hall and Kearns, 2001). This is despite the promotion of social inclusion through a central policy drive across England which was intended to ensure that excluded groups were included (Department of Health, 2001, 2007). This meant that women with learning disabilities would be seen and included within normal spaces and activities in the community that they lived. After the closure of the long-stay hospitals, a new life in a community was intended to offer everyone the same opportunities, and the success of this policy was closely linked to increased employment, integrated leisure and home ownership or tenancies. However, the lived experiences of people with learning disabilities have
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suggested that the reality of social inclusion is far more complex, that taking part in ‘normal’ community life still holds barriers and separation for women with learning disabilities, and paid employment for many remains nothing but a pipe dream or ‘romanticism’ (Burton and Kegan, 2006). The latest Health and Social Care stats confirm that only 6.8% of adults with a learning disability known to the Council are in paid employment as of 2013/14 (Department for Work and Pensions, 2014).
The narratives of the ten women in this study suggest that they are more likely to select friends and activities that were associated with those that had a learning disability, rather than engage with the more inclusive leisure or work options within the wider community.
The photographs and interviews demonstrate that the women thought it was important for them to keep busy and to meet up with people. They enjoyed doing voluntary work, taking part in leisure activities that took place in the local community or at home. I have presented these as two separate themes
Work and Leisure: getting out and meeting people Keeping busy.
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4.6 (i) Work and Leisure: Getting out and meeting people
A key component and challenge of the English policy ‘Valuing People’ (Department of Health, 2001a) was getting people with learning disabilities into some form of paid employment. This was seen as a key marker of success and a prime indicator of social inclusion and acceptance as a valued citizen. At the time of this study, Eve was the only woman who was in some form of paid employment, working part time hours at a local supermarket. Eve was 55 at the time, and the youngest woman in this study; she had worked every Saturday in the staff dining room at the store for twenty years.
‘I do the washing up, keep everything clean, but I don’t do the cooking now: it was difficult for me as their oven is very big. It is this big. The way that they cook the frying egg, the fat goes on my arm and I am a bit frightened. I have been there for a long time, longest in the dining room’ [Eve: 172-75]
Although Eve had been working there for some time, outside of her working hours she did not meet up with any of the staff who worked there, and this did not seem to be something that she wanted or thought about. What she did value about being employed was receiving a salary, and the staff discounts that came with the job. Although none of the other women in this study were in paid employment, three of the women participated in voluntary work, often at one of the local charity shops, and this seemed to help them to structure their day, keep them busy and add positive values to their lives.
‘I work in Oxfam in Barnet. I do a half day - I do sorting, pricing, working on the till: gives you something to do. I wouldn’t want to sit at home all day like. Some of them do but I say no, I wouldn’t do it’. [Susan: 86-88]
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Figure 15: ‘Sorting, ironing and serving on the till, I work Monday, Thursday and Friday and have been there for 2 years’ [Eve: 45-57]
Generally, as people approach old age, retirement from employment is often seen as a ‘normal’ transition point, and there is a correlation between volunteering and improvements in health in later life. It has also been connected with making a valued contribution to the local community (Putnam, 2000).
Taking part in voluntary work has been viewed as an opportunity for improving the social capital of those who have a learning disability. Putnam (2000) defines social capital in terms of social networks and the norms of trust that enable everyone in a community to have full and fair access to activities, social roles and relationships (Chapter 2, p.56). The ‘Valuing People’ strategy (Department of Health, 2001a, 2009) did not actively promote the importance of volunteering, and in fact was relatively silent on the benefits of voluntary work, focusing in the main on increasing opportunities for paid employment. The valuable contributions that individuals can make through volunteering may be a missed opportunity for many women with learning disabilities, especially as they grow older. In this study, the women who were volunteering in local
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charity shops talked with great pride about how they helped others, and this appeared to contribute to their sense of value and provided some structure and purpose to their daily life.
Some of the older women in this study associated paid or voluntary employment with their younger adult life.
‘I don’t work anymore, too old now you see. Yes, I worked when I left school, I worked in a place called xxx, packing, you know, no not packing, adding up something, you know, different things and putting them in a bag like you know like, but it made me sort of ill. It made me ill so many times, you know, she’d come home and find me white, so I left there and told mum, and she got me out of there’. [Marie: 352-57]
Being employed was one of the key goals of community integration, and a core component of the social inclusion and central to English Policy (Department of Health, 2001, 2009). English policy has suggested that if people with learning disabilities are employed in paid jobs, then this brings with it a sense of belonging and citizenship, and provides individuals with a sense of value, however it has been argued that this can be a very narrow perspective and does not take into account the changes to structures or attitudes within these spaces that are required (Hall, 2005). For two of the women in this study who had been in paid work, employment had not been a good experience. The sense of belonging and camaraderie that can be a key element of paid work had often not been realised, and in this study there was a contrary story that emphasised difference.
‘I worked with them for a couple of weeks, but I was too slow, they told me I was too slow, after that I went to help my mum and dad’. [Jennifer: 262-67]
Eight of the women participants in this study were past the usual age of retirement, and one could argue that they have now become part of the retired population; the generic population the age of sixty often marks the beginnings of a life without work and one
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where leisure time is enhanced. However, for many individuals with a learning disability, paid work and retirement are often not part of their life experiences. Although many people with learning disabilities have expressed a desire to work during adulthood, only about 9% of the population of people with learning disabilities in the England have experienced paid employment (Department of Health, 2001a). Many individuals continue to attend day centres or their equivalent well past the normal retirement age (Foundation for People with Learning Disabilities, 2002), although in some areas day services cease at the age of retirement, even though individuals voice their wish not to retire (Jingree et al., 2005).
One of the dominant narratives that emerged from this study was the importance of being part of an organised group that shared a common interest or hobby; this was a key part of the women participants’ busy day, and a time for friendships to be nurtured. Living on a low income can have an impact on how older women with learning disabilities are able to occupy their leisure time, and a lack of financial security can be a barrier to certain activities (Walsh and LeRoy, 2004). Early research on retirement for those with a learning disability paints a gloomy picture, with fewer choices and restricted opportunities for many as they reach retirement (Walker and Walker, 1998). However, all ten of the women in this study had some form of regular help from paid support staff, and when this worked well, staff encouraged and either provided direct support, or facilitated their participation, in a range of leisure activities. The findings of this study suggest that support received from paid staff, family and friends is an external asset, and enabled the participants to take part in interesting activities and clubs in their local community.
When the long-stay hospitals first closed, community activities were often housed in large day centres for people with learning disabilities. However, with the passing of
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time, these have largely been replaced with smaller and more individually-tailored services that are either building-based or based with virtual teams that provide support that enables access to a range of leisure activities.
All ten of the women in this study were regular attendees at a number of small group community events, and these focused on interests such as exercise, drama, art, cookery or music. All ten of the women in this study also shared their love of restaurants and the theatre. There was a consensus across the narratives that told a story of increased leisure opportunities in old age.
‘It was the Five Bells, you know the Five Bells, let me see - I think six or seven of us went for the meal. It is a lunch club for the over 50s’.
[Belinda: 1249-52]
‘I go out more now, they say I do more things now - I do the steering group when they have it, I do the walking group and the tenants’ meetings’. [Susan: 49-51]
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All ten of the women in this study were fairly active and enjoyed having a variety of things to do during the day. The organised groups that women participants attended were more likely to be arranged through learning disability organisations, and these would often be segregated events.
It should be acknowledged that not all of the activities provided through learning disability services received a positive response from the participants. Marie was very vocal about the activities she did not like, and preferred to stay in, rather than join in with some of the events that had been arranged. Marie lived in a residential setting and the activities seemed to be organised group events rather than individually-tailored, which was likely to make a difference and influence participation. However, choosing to participate or remain at home was an option for Marie, and one that she frequently took.
‘I can’t stand swimming, no I don’t do that, or bowling’. [Marie: 882-3]
One of the community activities that had the potential for promoting inclusion was going out to the local shops; this emerged as a regular event from the narratives of all ten of the women in this study. Seven of the ten women were able to travel independently across the local area, usually to purchase household items or personal clothing.
‘Sometimes I go to the big shops in Brent Cross by myself’. [Jane: 358-9]
‘I go round the shops on my own if I want something at the shop, like maybe the TV Times, you know, with the programme list’. [Marie: 239-40]
‘I go shopping on my own, yes - I will go to Sava Centre or Enfield. I go to the Sava Centre: I go on the 84 and use my bus pass. I like the big Marks; I don’t buy things unless I need it’. [Susan: 20-22]
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Figure 17: ‘That is my shopping trolley - I put all my shopping in there’. [Jane: 43-45]
Shopping was an activity enjoyed by all ten of the women, and it was seen as a leisure activity as well as a practical necessity; however, this often required them to travel independently using public transport. Three of the women were unable to travel independently and required support from members of the staff team for shopping activities.
‘I had some nice bacon sandwiches, and bought some new trousers’. [Debbie: 134-5]
For three of the participants, paid staff were viewed as people who could facilitate shopping trips, and these activities were valued by the women participants.
Walking was another leisure pursuit that was central to the women’s narratives. Eight of the ten women in this study associated walking with getting out and about, and the women saw this as a source of enjoyment and a means of keeping healthy. However, a number of studies have found that people with learning disabilities are leading sedentary lives too (Hove, 2004, Emerson, 2005). In this study, walking as a leisure or health-promoting pursuit seemed to be influenced by the attitude of paid support staff
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and their perceptions on walking and staff availability. Another contributing factor to the uptake of walking seemed to relate to the availability of outdoor pursuits, dependent on the variability of local opportunities.
Many women with learning disabilities have never experienced paid work, and as a consequence leisure activities have become a part of a continuum of activity and leisure that follow through from adulthood and into older age. This meant that the usual transition of work and retirement was not a major change that they experienced.
Walking appeared to be a community pursuit that enabled eight of the older women with learning disabilities to access a variety of leisure opportunities well past the usual retirement age of sixty. This opportunity to continue to take part in leisure activities could be advantageous to older women with a learning disability (Judge et al., 2010).
‘I am a good walker, sometimes my link worker gets me walking, and it’s good for me’. [Susan: 154-56]
‘I walk there - it is good exercise you see’. [Jenny: 321-322]
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Eight of the ten women walked for pleasure, and six of them also associated walking with keeping healthy, keeping fit or being good for you. However, not all the women viewed walking as pleasurable, and Deborah much preferred going to visit places by car.
‘I hate walking; sometimes I go out walking, only sometimes’. [Deborah: 157]
A number of English health and social care policies and public health initiatives have aimed to increase the frequency of walking amongst the older population. This has had varied success and has not always been fully inclusive (C3 Collaborating for Health, 2012).
Besides the daily and weekly leisure activities, the women shared their enjoyment of going on holiday. The women participants who lived in supported housing associated their holidays with an increased levels of independence and choice, and described going on ‘unsupported holidays’ i.e. holidays without any staff presence.
Eight of the ten women in this study shared narratives and photographs that demonstrated that holidays were very important to them, and these often symbolised their newfound independence. The women had received varying degrees of help to plan their holidays, either from the paid staff or through a travel agent, and a number of the women had gone away on adventurous holidays both in England and abroad, on their own or with friends. Eve’s narrative was about going on holiday with her friend Jeanette.
‘Jeanette and I went to lots of places; look, I have a key ring (takes one from her bag). That was on pleasure beach [displaying a photograph of the two of them]. We had weather that was off and on. No we went on our own - it wasn’t a supported holiday; we just went away on our own. I don’t really like supported holidays ‘cause I went to Cornwall one year and we went to stay in this house and ur the staff and we couldn’t go out on our own, we had to be with the staff 24 hours. I did not really enjoy it
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and I thought “I am not doing that again”. We then decided to go away on our own. I have been to Blackpool, Butlin’s and Haven; I have been away three times on my own’. [Eve: 98-113]
Going on independent holidays was very important to the women in this study; it was clear that they enjoyed the freedom that these holidays brought, and it appeared to have increased their self-esteem.
‘It was an unsupported holiday you see, that we had to look after ourselves, and we were alright anyway, I think when we buy you know the holiday itself, you know I had always wanted to go, you know, to the South of France and visit St Tropez, and now I have’. [Jenny: 134-140]
Figure 19 ‘In Minehead on holiday. We are going again next year. We love it’. (Carol: 111-112]
The women who enjoyed unsupported holidays were very proud of the independence and freedom that these holidays gave them, and valued the opportunity to choose where they went and with whom. However, independent holidays were not available to all of the women. Deborah, May and Marie lived in twenty-four-hour staffed residential care, and their stories were about a different type of holiday. The opportunities for them
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to go on holidays unsupported did not appear to be available, but central to all of their narratives of staffed holidays, were mentions of enjoyment and fun.
‘When we go on holidays we go where everybody else wants to go or whatever. The newer holidays I have started I never know what is going to happen. I have tried new ones’. [Susan:118-120]
Linda had very limited opportunities to go on holidays in comparison to the other women participants in this study. This is perhaps a reflection on Linda’s residential arrangements; she lived in a very large religious home for the elderly. This meant that the staff support she received was not always responsive to her individual needs and aspirations. However, Linda expressed an air of acceptance when talking about her reduced opportunities for going out and having limited holidays in the UK that were usually associated with religion.
‘No, not really. We went to Walsingham, that is, it was a lovely day that day, a couple of days, but we had a nice time’. [Linda: 164-65]
Summary
In this study, it was notable that, in comparison to those in supported housing, women who lived in residential services were more reliant on the availability and commitment of staff in terms of taking holidays and pursuing leisure interests. However, keeping busy and meeting with people was very important to all ten of the women in this study.
Eight of the women regularly took part in a number of organised groups, and also enjoyed going shopping and walking for pleasure. Taking an annual holiday was also something that they valued, and those who were now enjoying unsupported holidays were very proud of their newfound independence. Most of their leisure time was organised through various learning disability services, and the pursuits that were part
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of community life, such as walking, shopping and holidays, were either undertaken