Most families with a disabled child say that one of the most difficult things is dealing with other people’s reactions. Sarah Butler explores our complex responses to disability.

A year ago, I wrote about families with multiple-impaired children. I don’t have a child with special needs myself, and I was apprehensive about the interviews I would carry out to research the piece. There didn’t seem to be a reason for my discomfort, but there it sat until I picked up the phone and we started talking.

Afterwards, I wondered about my initial anxiety. I wouldn’t usually hesitate to call an interviewee. Did I have hidden negative feelings about disability? I didn’t think so. Mostly I was afraid of unintentionally saying something inappropriate or hurtful, I had met few people with children with disabilities, and didn’t know if the difficulties their family meant that the social ground rules had shifted.

It made me wonder whether I was unusual in feeling this way. I wondered too what it must feel like to be on the receiving end of this anxiety.

I found a first clue to the complexity of our feelings about impairment on the CHARGE web forum. A mother talked about some strangers’ distressing behaviour towards her and her daughter:

‘…I’ve noticed a lot of people stop and stare when I am feeding Jo in public. They look at her like she is from Mars. I end up piping up and telling them this [a feeding tube] is the only way Jo can get food in her tummy because she is special. Most mothers grab their kids and walk out. I feel somewhat hurt.’

But she was honest about her own response to other children too:

‘I know I have a hard time looking at the children when we go to the children’s hospital. I don’t know if it is because I feel guilty because Jo isn’t as badly off, or I’m afraid she will be that badly off one day.’

It was a relief to read that this mother, whom I would expect to feel at ease around children with impairments, also feels uncomfortable sometimes. It was a surprise too, so I decided to find out more about how we all respond to impairments in children. Most of the research into this topic has been with mothers who have a child with special needs so I decided to see if the experiences of mothers with a deafblind child matched this.

I started out by talking to Brenda Carter. She and her husband Jack have three daughters – Janet, the oldest, is 42, and is deafblind because of congenital rubella syndrome. The Carters have been living with others’ responses to impairment for a long time now. Brenda finds that the way that people treat Janet depends mostly on whether they know her or not.

The Carters have lived in the same village for many years, so the people around them have got to know Janet, and generally respond positively to her. Brenda’s most upsetting experiences have been away from this familiar environment. She finds that it’s Janet’s behaviour which unsettles strangers: ‘The trouble we’ve had is when Brenda shouts and bawls and screams – it’s the only way she can express what she wants.’ Brenda finds the best way to deal with this is for her to lead Janet away and explain to her, using the limited signs they have, that they’ll do something else.

Sometimes, though, this just doesn’t work. Other people don’t always understand what is happening, and can make things worse. Brenda describes how one time she and Janet went to a large chainstore and found that the department they wanted had moved. Brenda tried to explain this to Janet, but Janet thought Brenda was trying to stop her buying what she wanted, so she shouted and screamed. ‘An assistant came and asked me to move Janet to the office. That was impossible – and so Janet really kicked off, had a nosebleed and got blood on the clothes. I had tried my best to explain, with Janet shouting and screaming, that I was sorry, I couldn’t move her at this stage. I didn’t say a lot – I just tried to deal with Janet. People scattered in the shop. It was a nightmare.’

Was Brenda upset at the way people reacted? She says not: ‘I think I’ve got really hardened and you just have to stand your ground.’ Brenda admits that she wasn’t always as robust – but over the years she has learned to cope with others’ responses to Janet, and seems on the whole to feel pretty positive about them.

Like Brenda, Gillian Wood has learned to deal with others people’s insensitivity, though she too found it much harder when her son Adam was a small child. Adam was born extremely prematurely and is deafblind; he’s now 15. Gillian expects people to respond positively to her and Adam. When they don’t she doesn’t tend to take it personally, she sees it as the other person’s problem, not hers.

It’s not always easy. Gillian describes meeting an older woman, when Adam was eight or nine years old. This woman, just in passing, said to Gillian ‘Well, your problems will begin when he starts masturbating in public.’ How on earth does anyone respond to such a jaw-dropping statement? And why did the woman say it? Gillian guesses that this woman had some personal experience of another child, who had indeed masturbated in public, so she thought that it followed that Adam would too, and that it was an appropriate thing to say as one ‘aware’ person to another.

This woman was assuming familiarity with Gillian and Adam which she did not have. It’s easy to criticise her. But on another, positive, occasion, Gillian was keeping Adam amused while they waited in a supermarket checkout queue, and a woman leaned over and put her hand on Gillian’s shoulder. She said that she’d been watching them, and admired Gillian for her patience. Now this too could be said to be over-familiar. We wouldn’t say this to most strangers, why is it appropriate to say it to Gillian? Gillian found it supportive, but would everyone?

Both Gillian and Brenda talk positively about the majority of their encounters with strangers. Over the years they have found ways of making it easier for others to feel relaxed with them – the most effective being their own expectation that people will treat them well. I wondered though whether their experiences were typical, does everyone cope this well? Are these families representative of all families with impaired children?

I turned to research by social scientists. Work by Sara Green in the US, and Susan Gregory in the UK show that in some ways Gillian and Brenda are typical, many people do learn to cope with others’ responses, and an optimistic outlook does help. But many people also struggle to cope. Even those who do cope can find it exhausting, perhaps because they so often feel that they live their lives in public, where people feel free to stare and to comment on them in a way they wouldn’t do if their child was not impaired.

Am I a proper mother?

Susan Gregory recognised that disabled children are stigmatised, and wondered if their mothers also felt stigmatised. She began her investigation by looking at popular books on pregnancy and motherhood to see how motherhood is seen in our society.

She found that pregnant woman are constantly advised to manage their pregnancies to avoid having a disabled child, to eat some foods and not others, to take some pills and not others, to avoid certain illnesses, to give up smoking. The message is clear – no one wants to have a disabled child – but reassuring too, because the books also make it clear that it’s unlikely to happen to you.

After the birth, everything changes, disability is taboo. Books on bringing up babies and children just don’t mention impairment. `Normal’ mothering involves `normal’ babies. Mothers of children with impairments are invisible. By omission, they are excluded from the ranks of ordinary mothers.

They will of course see pictures of mothers with their disabled children in the media – but most of these focus on sacrifice and bravery, once again setting mothers of disabled children apart, to be admired but never envied. They are clearly stigmatised.

Susan Gregory quotes a woman she interviewed: ‘People are embarrassed, I think they’re guilty. You know they feel rotten that you’ve got a handicapped child and they haven’t. They don’t want a handicapped child but wish you hadn’t got one.’

Negative perceptions

How does this negative perception of mothering a disabled child affect people? This is what Sara Green researched and her work is particularly interesting because not only is she a professional sociologist, but she is also the mother of a daughter with cerebral palsy.

She was already a sociologist before Amanda was born, so her work made her acutely aware that she should expect to be stigmatised as the mother of a disabled child. Here’s what she says about her feelings when Amanda was small.

‘I knew that Amanda would likely be devalued and discriminated against because of the stigma associated with her diagnosis. I also carried an intense, almost unbearable, fear that this stigmatised status would result in a life of rejection, mistreatment, social isolation and loneliness for my daughter. Many years later I have learned that stigma is a much more complex phenomenon than I originally anticipated. Both Amanda and I, as her mother, have experienced an amazing array of peculiar public attitudes, reactions and behaviours which vacillate in dizzying fashion from kind to cruel to benign but awkward and back again. This pattern of reactions is always perplexing and sometimes uncomfortable in the extreme. It is balanced, however, by the fact that within an ever widening circle of Amanda’s friends, neighbours and casual acquaintances, she is entirely accepted.’

From this very personal experience of the complicated effects of stigma, Sara Green developed her research into how stigma affects mothers by surveying mothers of impaired children in her home state of Florida in the US.

Most women she interviewed had little personal experience of children with disabilities before they became the parent of an impaired child of their own. Before the birth or diagnosis they had shared the general view of society that disability is a negative thing. Several admitted to having felt uneasy around people with disabilities before they had their own child. Some mothers continued to feel negative about disability, which could make their experience of mothering a disabled child particularly hard.

Once they had a disabled child of their own, though, most mothers’ own feelings about impairment changed. However, many were very aware of other people’s negative attitudes and felt guilty in hindsight for their own past views. These feelings of guilt and awareness of other’s attitudes could be a real burden. They might also feel to blame for their child’s disability – sometimes even because members of their family or community told them so.

This is a lot to bear, but many families do cope. They often learn to see that others’ stigmatising reactions result from ignorance, and are not meant maliciously. Many take on the role of an educator, teaching those they encounter to see their child and them positively.

This approach seems to be successful for many families, but it takes its toll – they must always be ready when in public to step in and take the lead in any interaction, and to show people how to respond to them. One mother Sara Green interviewed said in frustration ‘I shouldn’t have to give an explanation’.

This constant readiness to support others is enormously exhausting for many mothers. Indeed some cannot cope, and withdraw. But by avoiding other people, no one can become familiar and comfortable with them, so the stigma remains unchallenged and its effect can only grow.

Unsurprisingly, Sara Green found that the more women expected to be stigmatised, the more it affected both their and their children’s emotional and social lives. But she also found that a woman who feels stigmatised will find it harder to cope with the practical pressures of bringing up an impaired child.

Taking a positive approach

When I started this research I talked to Gillian Wood, the mother of a deafblind son. Though she wouldn’t claim always to have been treated with respect, she talked with warmth of her friends and of the acceptance she felt in the community in which she lives. When she described how she approaches new encounters, it was clear that she goes into them expecting them to be positive, ready to lead the way and to show an apprehensive stranger how to deal with an unfamiliar situation.

Gillian, for example, says that she has learned always introduce Adam first, not his impairments. She aims to ‘bring the other person in’. So if someone wants to talk to Adam, she’ll start off by suggesting they touch him to let him know that someone is there, she doesn’t go straight in saying that Adam is deafblind. She has to warn people that if Adam takes their hand he may bite it in greeting, but she finds this is rarely a problem if people know what to expect.

‘I take a pro-active approach, I’m aware that I find it difficult myself when I meet someone with an impairment. If they’re on their own you just have to get on and find a way to communicate with them. If they’re with someone, you don’t want to be condescending. I talk to the child and hope for a response or guidance from the person with them.’

Gillian says that she wouldn’t hold back from speaking to another family with an impaired child, even though she admits that she sometimes hesitates, out of concern that they might not want her to approach them. But she concludes that ‘it doesn’t matter how they respond; I can deal with it and maybe they’ll welcome the support’.

This seems like a good path for all of us – the worst that can happen if we approach a family with an impaired child is that we can be rebuffed. The best is that we can make a chink in the wall stigma builds around people, and make new friends into the bargain.

Stigma

When you read research about how people respond to impairment, it helps to know about the work of Erving Goffman. In 1963 Goffman publishedStigma, which is still probably the best known examination of how some people are excluded by society.

Goffman describes how society categorises people as ‘normal’ and ‘abnormal’. By definition, most people are ‘normal’. Their predictability means we don’t have to think too much when we interact with them.

On the other hand, when we meet someone we perceive as out of the normal, or ‘abnormal’, we may feel anxious. We translate our discomfort on encountering someone we see as ‘abnormal’ into stigma.

Much of this is subconscious, and we can decide how we behave when we meet someone stigmatised by society, we may be friendly and accepting, or aggressive and hostile, or we may reject them.

Even when we have positive feelings about a stigmatised person, we may feel awkward on meeting them, especially at first. Goffman says this is because the stigmatised person may be all too aware that others see them as different, and perhaps not acceptable. They may suspect that unpleasant thoughts lurk beneath a friendly veneer. This tension may be shared by the non-stigmatised person, who knows that the stigmatised person fears their friendliness is false.

Goffman’s language may be rather dated, but his description of the awkwardness of many first encounters is still all too valid. Our over-awareness but ignorance of each others’ inner thoughts combine to make many such meetings incredibly stilted and uncomfortable.

Fortunately, as people get to know each other, stigmatised attributes may fade into the background and cease to be relevant. This isn’t always the case, of course – some people are never able to accept someone with a particular stigma, no matter how long they know them.

Goffman explores many aspects of stigma, and makes fascinating reading. He describes how stigma spreads to affect those close to a stigmatised person. He calls this stigma by association a courtesy stigma. This is what Sara Green and Susan Gregory explore in their research into mothers of impaired children.

Strategies for dealing with other people

It’s not easy to cope with stigma, but many who do use strategies like these:

• They don’t let stigma define them, they know they’re human beings like everyone else.
• They assume others mean no harm but may be ignorant and need their support.
• If others can’t cope with their stigma, they reduce tension by taking the first step and talking about their child’s condition, showing that they take it in their stride.
• They give people a chance to get used to them and their child.
• Even if someone is presuming too much familiarity, they welcome their approaches, it’s a start.

This puts all the onus on the person who is stigmatised, of course. So those of us who aren’t must play our part. We must be aware of the effect our responses have, but not stifled by self-consciousness.

© Sarah Butler, 2005

Bibliography

Goffman, Erving, Stigma: Notes on the management of spoiled identity, Penguin, 1968, London (first published in the US by Prentice-Hall in 1963).

Green, Sara E, ‘What do you mean “What’s wrong with her?': stigma and the lives of children with disabilities, Social Science and Medicine, Vol 57, Issue 8, Oct 2003, 1361-1374.

Gregory, Susan, ‘Challenging motherhood: mothers and their deaf children’, 2004, at http://www.deafnessatbirth.org.uk/content2/support/reaction/03/. This is an updated version of article originally published in Phoenix A and Lloyd E (Eds) Motherhood, meaning, practices and ideology, Sage Publications, London, 1991.

Macha, Elly, ‘Disabled people and discrimination: a global overview’,Echoes, Issue 19, 2000, Geneva, and online at www.wcc-coe.org/wcc/what/jpc/echoes/echoes-19-02.html

Nagler, Mark, ‘All in the family’, 2003, on www.marknagler.com/articles.htm