10. Social Costs Of Blindness
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10.1 Introduction
The extent to which blindness and vision impairment result in social costs for both the individual and society should not be underestimated. Anecdotal evidence suggests a range of costs including an increased rate of relationship failure, family difficulties, depression, and loss of social connectedness amongst others.
While there is need to acknowledge the social costs of blindness, the current study is limited in its exploration of these. There are two main reasons for this: firstly, the research methodologies primarily employed in the study were considered to be largely inappropriate for examining social costs; and, secondly, there were questions over whether such data collection was ethically warranted within the context of current study.
Collecting information on social costs was considered ethical only if a process existed through which such findings could be effectively used to address those costs identified. While such data may have been collected to identify unmet social service needs experienced by members, such an evaluation was considered to be beyond the scope, mandate and resources of the current research.
However, while limited examination of social costs was undertaken, two common themes relating to social costs do emerge from the research findings. These are the loss of independence and difficulties achieving social integration. Each theme is discussed further below.
10.1.1 Loss of Independence
Loss of independence as an outcome of blindness and vision impairment has been illustrated in many of the previous research findings. Such loss is commonly experienced through restricted ability or inability to undertake a range of activities as well as increased reliance on others to undertake activities.
The need for support can result in a high level of reliance and involvement by family members in the lives of the blind and vision impaired. This is noted as having impacts on both family members as well as the blind or vision impaired person themselves. Family members can feel particularly bound or responsible for blind or vision impaired family members, while the vision impaired person may struggle to develop independently. The blind or vision impaired individual may recognise the additional costs borne by family members because of their vision impairment. This may in turn lead them to try and minimise their call on others, a response which can add to the difficulties and stresses already faced.
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Young people identify a range of ways in which they can struggle to achieve independence. They may be particularly reliant on their parents for transportation and may be required to live at home for longer than they would if they were sighted.
For parents of blind or vision impaired children, the loss of independence can be experienced in many ways through the increased dependence the vision impaired child typically has on their parents.. Fewer opportunities for time out from the vision impaired child is reported. There can be many reasons for this: the need to be constantly aware of what the child is doing, particularly around potential physical dangers; the child being less able to engage in more independent and group play; and less likelihood that the child will easily visit and play with other children.
The additional time and financial costs incurred because of the blind or vision impaired child can also result in less time or attention spent with other children in the family. Parents may inadvertently emphasise the achievements of the blind or vision impaired child over siblings, potentially adding to further sibling rivalry or resentfulness. Family activities may also be restricted if certain activities are deemed inappropriate or particularly difficult for the blind or vision impaired child to engage in. Identified examples include going to the movies, tramping, or visiting the zoo. Such family dynamics may in themselves lead to further costs to the family, for example, behavioural problems with the sighted siblings or even relationship breakdown within the family.
10.1.2 Difficulties Achieving Social Integration
Participants commonly report that blindness or vision impairment can create many difficulties in social interactions and developing social networks, particularly with sighted people (refer also: Mott & Riggs, 1992; Advisory Council for the Community Welfare of Disabled Persons, 1989; Whitbourne, 1985). Difficulties may be experienced in identifying what social opportunities exist, where they are and how they would be accessed. There may be further need to identify how suitable the group or activity will be for a vision impaired person. This can include the extent to which there is willingness to accommodate the specific needs of blind or vision impaired participants. Making initial contact with the group or activity may be difficult; particularly when the vision impaired person is cognisant of the specific needs and requirements they will bring to the group. Furthermore, substantial planning can be required to participate, including transport arrangements and potentially significant transport costs.
It is noted that the ability to fit in and participate in a range of social activities is often highly reliant on initiating and maintaining visual contact with others. The inability to initiate visual contact is commonly noted as a barrier to forming relationships (refer also: Newbold, 1987). Initiating and maintaining social interactions in unfamiliar or crowded social settings such as parties, nightclubs or other social gatherings can be particularly difficult. Comments from a number of participants illustrate these difficulties further:
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"You are like a wall flower... You just sit there." (Female Older adult)
"It's difficult to circulate like everybody else does in a gathering. You can't look across a room and spy somebody and head over there and meet them ...If we're at a function it definitely has an impact on how effective you are with networking, or even just social contact." (Employed Female)
"... you [have to] sit back and wait for them to come to you, and they don't always. You can be sitting and nobody is talking to you at all." (Female Older Adult)
The difficulties encountered in social situations may result in blind or vision impaired people 'sticking together' in social situations or electing to socialise primarily with other vision impaired people. Social difficulties may result in a loss of confidence and possibly a withdrawal from, or avoidance of, certain social situations, for example, loud bars, clubs and other settings where there may be a lot of people. One male participant comments:
"...All my mates were going clubbing and stuff. You would go as a group, but a lot of them would grab a drink and go off and mingle... I would be stuck on my stool having a beer. Someone would come back every ten minutes and [ask], 'how are you doing, do you want another beer?' If I was just stuck on a stool listening to music I can do that at home...I have gone to this place to meet people and have a laugh, and I am bored out of my wits." (Working Aged Male)
Social interaction may get particularly difficult for older adults due to the physical and emotional effort that can be involved in maintaining social connections with limited or no sight.
The partners of vision impaired people may also incur costs as a result of the social constraints experienced by their partners. For example, one participant reports never going to the movies because his partner is not inclined to do so.