Introduction
Having a child with disabilities in the family
The family of a child with disabilities is, first and foremost, a family. Such a family enjoys doing the same simple things that all families enjoy doing – going for a walk in the park, going to the shops, going out for a meal, having friends round. Equally, the parents of a child with disabilities are, first and foremost, parents. They have high hopes and great dreams for their child. They identify and celebrate the same positive qualities in their child – trying hard, keeping on trying, doing their best – as all parents do. Indeed, children with disabilities do try hard, do keep on trying, do try their best, precisely because, first and foremost, they are children. This deep and enduring commonality of experience – between and among all families, all parents, all children – is amply demonstrated in a recent report, Our family, our future, in which a number of families with children with disabilities were invited to tell their stories.1 The following excerpt from the testimony of the parents of fifteen year-old Susie-Jo, who has multiple disabilities, is not untypical: "we are celebrating because our teenage daughter recently held an ice cream and ate the entire thing unaided, thrilled because she’s putting her own shoes on, even if she may never do them up by herself".2
Just as each of us shares in this commonality of experience, whether as a son or daughter, mother or father, so each of us may, at any time in our lives, be exposed to conditions which result in a disability. It might be expected that this commonality of experience on the one hand, and shared vulnerability to impairment, on the other, might predispose those of us who have no additional needs to an attitude of empathy and understanding towards those who do. That is to say, it might be expected that our shared humanity might make us respond positively and supportively to children with disabilities and their families when we encounter them in our daily lives. However, sadly, much, if not most of the evidence points in the opposite direction. Too often, these families are thwarted in their attempts at even the most mundane of activities by the prejudice and lack of understanding they encounter when they are out and about. Too often, the attitudes and actions of the general public are unthinkingly negative, even hostile, effectively stigmatising the child with disabilities and, by association, their parents.
Public perceptions of disability
A recent survey of more than six hundred parents who care for a child with disabilities found that almost 70% of respondents felt that public understanding and acceptance of disability is poor or unsatisfactory.3 The same survey identified public attitudes towards disability as one of the three major barriers standing in the way of families of a child with disabilities leading ordinary lives. Negative public attitudes manifest themselves in a number of ways in the lives of parents of a child with disabilities. The Contact a Family survey found that many of the respondents’ comments were about "having to deal with people’s stares and comments".4 Sadly, this echoes the findings of some of the very earliest academic research into the experience of parents of a child with disabilities, indeed "the problem of negotiating public encounters is a common theme in most research on stigma".5
Stigma attaches to a child with disabilities and, by association, to their parents.6 Stigma is fundamentally different from discrimination. Stigma is society’s negative evaluation of particular attributes or behaviours.7 Discrimination, on the other hand, occurs when actions are taken (or not taken) on the basis of a stigmatising belief or assumption. The term "discrimination" directs our attention at the discriminators, at those who actively reject and exclude, whilst stigma, conversely, focuses attention on those who are rejected and excluded.8 There is, thus, a diffuse, and difficult to pin down sense that those who experience stigma are somehow themselves responsible for their stigmatised status, a sense in which the stigmatic embodies their own stigma and so cannot escape it.
The stories collected in Our family, our future, whilst leavened by much strength, hope and optimism, are coloured more by the difficulties and challenges which the parents of children with disabilities face. Noah is five years old and has severe disabilities. His mother relates that;
"Noah attended a nursery last year, which had a policy of including disabled children. However, he came home with dirty and ripped trousers after his first day and when I called to ask if everything was ok, they said they couldn’t cope with Noah and that he would have to leave".9
In the same vein, a recent survey by the National Autistic Society investigated public perceptions of autism. One respondent stated that:
"my family have been threatened to be evicted from our house as our neighbours have complained about my child head-banging on the walls. The Authority won’t help us to make adaptations to the house to have soft-padded walls".10
The consequences of stigma
A number of different facets of the experience of being stigmatised as a parent are exemplified in this quote from the mother of a girl with autism:
"I’m not a human being. I’m only the mother of a handicapped daughter and I don’t have a mind of my own. You often get that. Oh, people that know me probably wouldn’t although they might think it, you know, but generally you get treated as if you’re an imbecile too… and you think ‘Oh, that’s just me […] I’m not a normal person […]’. They tend to forget that you’re still a normal person like them and you want to lead a normal life".11We can detect here:
The sense of being made to feel different to one’s peers: I’m not a human being […] I’m not a normal person
Self-denigration, thus internalising the stigma: I’m only the mother of a handicapped daughter and I don’t have a mind of my own
Imputing negative attitudes to others, even friends: you often get that. Oh, people that know me probably wouldn’t although they might think it, you know
Stigmatisation by association: generally you get treated as if you’re an imbecile too.
Defensive adherence to an eroding sense of self: they tend to forget that you’re still a normal person like them and you want to lead a normal life.
Courtesy stigma and the parents of children with disabilities
Researchers generally agree that the parents of children with disabilities experience what Goffman12 defined as ‘courtesy stigma’. Courtesy stigma is a stigma of affiliation, which can attach to an individual as a consequence of their association with stigmatised groups, rather than as a result of any innate attribute or behaviour. In the context of families of a child with disabilities, parents may become the object of courtesy stigma simply because of their relationship with the child and not because of any shared disability.
The stigma experienced by parents of children with disabilities
This paper examines the stigma experienced by parents of children with disabilities. For the purposes of this paper, "child with disabilities" refers to children with a neurological condition, such as cerebral palsy, autistic spectrum disorder, epilepsy, learning disabilities, attention deficit hyperactivity disorder, behaviour and emotional problems, and developmental delay. The effects of such stigma should not be underestimated, not least because it is experienced in addition to, and alongside the range of challenges and stressors which the arrival of a child with disabilities in a family brings. Beresford observes that "most parents found the stresses associated with the care of their disabled child to be wide-ranging, unrelenting and sometimes overwhelming".13 Researchers distinguish between "enacted" stigma and "felt" stigma.14 Felt stigma refers to parents’ internalised feelings of shame and the fear of being rejected or excluded by others. Enacted stigma refers to instances of outright discrimination or exclusion experienced by parents.
The experience of felt stigma
Investigating the experience of felt and enacted stigma by parents of children with high functioning autism, Gray15 found that slightly more than 75% of parents had experienced felt stigma: "most commonly parents imagined that others were critical of their child-raising abilities, not accepting of them and made them feel embarrassed".16 Embarrassment was the most common form of felt stigma which parents reported, most often experienced in the everyday social settings in which parents find themselves with their children. As one of Gray’s respondents relates: "we went on a … camp and we were pretty apprehensive about going … We were the only ones with an autistic child and … he performed in front of all those people there and had to take charge. And he called me an idiot in front of all those people, and swearing started to come out, and everybody just freezes. Everybody is just embarrassed".17
This experience of felt stigma is echoed by the parent of a young woman with Asperger ‘s syndrome:
"people don’t understand her behaviour – why she’s so antisocial on some occasions and why on others, she is so effusive. She tries to mimic social behaviour, but it’s exaggerated. She can go from being quite nasty with some people to being obsequious with others, almost fawning. People don’t know how to cope with that sort of behaviour".18
The experience of enacted stigma: avoidance
Conversely, only about half of Gray’s respondents had experienced enacted stigma, which generally took three main forms: avoidance, overtly hostile staring, and rude comments. Of these, the most common was avoidance. Other research has also revealed that social exclusion is widely experienced by the parents of children with disabilities, even to the point of immediate and extended family staying away. In Mencap’s 2001 survey, many parents responded to this effect, as the two quotes below exemplify:
"neither grandparents offered to take Bradley for a walk. My mum used to babysit once in a blue moon, as long as he was in bed. I think it’s because they did not accept Bradley as a person in his own right."
"My brother was never interested. My mother never bathed her, fed her or babysat for her. They just stayed away because of all sorts of excuses. They never tried".19
Avoidance can also be more subtly expressed:
"… they never ask about the child at all, never. And then they’ll be talking about something and you might say to them ‘How’s your child getting on?’ or something and they’d say ‘fine’ and then that’s it".20
The experience of enacted stigma: hostile staring
The second form of enacted stigma, overtly hostile staring, is also typically experienced by parents in everyday settings where they, and other families, habitually go with their children. Saskia is ten years old and has multiple disabilities. Her mother writes that:
"it is difficult taking Saskia out on my own and can be soul-destroying. There are very few places that I can take Saskia before we are stared at and asked to leave. I now have to warn people before I go".21
Similarly, the following is a quote from the mother of an eight year-old boy with autism:
"I usually get stares and tuts from people who just think I’m a bad mother. I even once had a woman in a supermarket tell me that I shouldn’t take my son out in public even after I explained that he is autistic".22
The experience of enacted stigma: rude comments
The third form of enacted stigma, making rude comments, is experienced by many parents of children with disabilities. As the National Autistic Society reports:
"in shops, in restaurants, on public transport – every day and in all sorts of places, parents face lack of understanding and intolerance and this in turn causes considerable stress and anxiety".23
One of the respondents in the National Autistic Society’s survey, the parent of a six year-old boy with autism, stated:
"he didn’t used to like going into supermarkets […]. He would scream as soon as he went in. People would come up and say to me, ‘if that was my child, I’d smack him’ or ‘he needs a good slap’. People pass so many comments you’ve got to grow a thick skin otherwise you’d stay in all the time".24
For parents, it may be difficult to ignore this kind of unwarranted attention. The parent of Davis, a young boy with autism, relates the following:
"the unfamiliar surroundings were making Davis anxious and he was whining. ‘Give him a slap,’ growled the young workman. There was an awkward silence from the other people in the café. ‘He has a disability’ I said. The workman retreated into his paper. The others relaxed and returned to what they were doing. It had worked".25
Accounting for variation in the degree of courtesy stigma experienced: mother or father?
Researchers tend to agree that, as it is the mother who is far more likely to be the parent who takes the child with a disability out into the world, she deals far more with public encounters and hence, with the experience of courtesy stigma that these encounters can entail. Indeed, Gray26 found that mothers of children with disabilities are much more likely than fathers to experience stigma, both felt and enacted. Another possible explanation is that mothers can often feel considerable guilt for their child’s disability27 and are likely to feel more responsible for the successful presentation of the family in the public realm, whether they are full time mothers or have employment outside the home. For a mother who experiences especially high levels of felt stigma, a consequence may be that her child interacts less frequently with their age peers at home or in the community.28
Accounting for variation in the degree of courtesy stigma experienced: visibility of the child’s disability
A second variable which can influence the degree of courtesy stigma experienced by the parent of a child with disabilities is the visibility or otherwise of the child’s disability – the more apparent the disability, the fewer stigmatising reactions are experienced, and the less outwardly apparent the disability, the greater the experience of stigma. This is because, in the case of a child with little or no outward sign of disability, members of the public are unable to find an explanation for any "socially unacceptable behaviour" that the child might produce, other than by blaming it on bad behaviour, poor parenting or a mixture of the two.
Accounting for variation in the degree of courtesy stigma experienced: severity of the child’s symptoms
The degree of courtesy stigma experienced by the parent of a child with disabilities can also be influenced by the severity of the behavioural symptoms which the child exhibits, with parents of children who can be aggressive or violent being far more likely to experience enacted stigma than parents of children who may be less disruptive. The reasons for this are, simply, that a child who is more aggressive is more likely to disturb those around them and hence, more likely to provoke a strong reaction. The social challenges this must present to the child’s parents are not difficult to imagine.
Conclusion
This paper has shown how public perceptions of disability can exert a negative influence on the lives of parents of a child with disabilities, adding appreciably to the already considerable challenges they face in caring for their child, and in negotiating public encounters. This negative influence is experienced in the form of courtesy stigma, whereby the stigma which attaches to the child because of their disability, is extended to the parents, simply as a function of their relationship with their child.
The courtesy stigma experienced by the parents of a child with disabilities remains little researched and incompletely understood. In particular, very little long-term research has been undertaken to investigate the experience of courtesy stigma over time, interviewing the parents and then, after a period of years, interviewing them again to chart any changes or developments in their experience of stigma. The little research of this nature that has been carried out, suggests that, whilst parents do continue to experience courtesy stigma, after the passage of time it begins to matter less to them, and becomes less threatening to their self-esteem. There is, therefore, a need to design and carry out long-term research investigating the experience of courtesy stigma by parents of children with disabilities. Such a study could begin to shed light on an aspect of parenting a child with disabilities that, to date, has received too little attention, given the extent to which parents perceive and experience such stigma as an additional burden in already stretched lives.
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