One of the challenges of being a parent / carer of a child with additional needs is occasionally encountering other people’s awkward attitudes to disability. Why is this, and how can they be responded to?
How attitudes arise
Like most attributes, attitudes form through a complex of nature, nurture and circumstances; for example, if a child reminds a member of the public about someone or something in the past.
Another factor is of social expectations or cultural norms of behaviour, which are surprisingly varied.
Thirdly, many people have learned from someone else’s views or through advertisers or the media. (See Griffiths, M., Media and Disability, referenced below, for more details about the ways in which our attitudes are deliberately influenced.)
How attitudes come out in other people
The easiest attitude to deal with is probably that of simple acceptance, expressing itself in no exceptional reaction at all. Where there is a reaction, some express admiration, how brave your child is, or how patient you are. Less positive ones include lack of understanding expressed in “looks” or more, or fear of something about the child such as unpredictable seizures, behaviours or even equipment. Some people appear wooden through not knowing what to say or how to act.
Anyone who is not at head-height with people talking is liable to be “talked over”. Added to that, some have different expectations of those they can see are disabled. If the disability is not visible, some will not believe that the child is really disabled, and will put anything unexpected down to the adults or something that must have happened earlier. They may underestimate the role of neurological, sensory etc. factors. (A related misunderstanding is that if a condition does not have a diagnosis it must not be significant.)
Examples that families have seen include others moving away slightly; name-calling or other negative talk; a sense of discomfort or lack of knowledge; or even a suggestion that the disabled child should not have been taken somewhere, reminiscent of an institutional attitude that existed in the UK until past the middle of the 20th century (Brignell, 2010). Yet another attitude is that if a child’s needs are expensive, they are getting more than their fair share of resources (this sometimes goes with a disbelief in a disabled child’s ability to achieve).
Some reactions show empathy with what parents themselves may have experienced, not unlike aspects of grief, oscillating with hope that a condition is not real, and/or trying to relate it to events in the past with feelings of guilt or anger. Sometimes there is a conviction that there must be a solution, which is not necessarily true. For parents this is complicated by the fact that the help and expertise available usually have their limits, secondly there are many things they see in their child that others do not see, and thirdly there is a variety of views out there on just about any question. Those with love for, and/or a responsibility to a child must find ways of dealing with these feelings. Others might take the psychological and/or physical opportunity to distance themselves from difficult things.
More subtle is the idea that a child with additional needs will understand things the same as other children who look of similar age; ironically, an idea that relates to the drive for equality. Related to that is the hope that if they are put in with a peer-group they will automatically blend with the group, whereas usually they will need some extra effort to help them do that.
Effects of other people’s attitudes
It takes a thick skin to be unaffected by other people’s attitudes. It is helpful to have a social circle of people who accept you and your child as you are, and a good measure of ordinariness. Many find it uncomfortable to feel always in the limelight, like a public figure who wears dark glasses to go and buy a sandwich.
Negative attitudes can affect a child’s self-esteem. They can also change lifestyle patterns, e.g. of going out and social life, limiting the extent and type of interaction with other families for parents as well. Children need reinforcement of positive attitudes, not only by parents / carers but also by schools, childcare, playschemes and other settings. The natural wariness of children (beyond the very young) towards differences can come out in difficult peer relationships unless they are actively countered. One method is “extended contact” (Cameron and Rutland, [n.d.]).
Attitudes of others interact with circumstances like unpredictability (that is, missing events at short notice because of child’s health / situation, or calls from nurseries / schools / others needing support from parents, making things difficult for those in a workplace and/or without a car); worry about guests, e.g. friends of the children; tidying up all the time to suit visits from professionals, special arrangements or kit; having less space in the routine to balance life and share out responsibilities (or, if there is just one parent, a need to take everything on, possibly leading to tiredness, stress, disinclination to be sociable, or finding it hard to be organised).
Children and parents / carers can use strategies to (a) strengthen their internal responses and (b) deal with other people and situations.
(a) Ways of strengthening inner resources include:
- another person who could be a source of strength and support such as a friend or counsellor;
- accepting challenges, just one day at a time if necessary;
- at the same time, doing something about things. This would include research, enquiry and note-taking to manage things, because difficult-to-access bits of information with a lack of answers makes things feel more difficult, time-consuming and out of control;
- an outlet, “time out”, a few minutes at a time or longer, to concentrate on something different, to deal with feelings, to take in something relaxing or to widen perspective; even just buying a cup of coffee somewhere after taking a child to school. This is also part of keeping well, which makes it easier both to care for somebody else and to be resilient.
(b)Ways of dealing with other people and situations:
- this comes naturally to some. Others are not “naturals” but can learn through training or study (e.g. Disability Action 2015), or by observing how “naturals” do it. In the long run, many parents find that things go more smoothly with a general positive or neutral approach, even if initially those do not feel natural;
- try thinking out in advance what you might say or do if faced with any of the attitudes described above; not unlike using “social stories” to help children to think things out;
- various other strategies have been tried, for example, “My six-year-old daughter has autism; my four-year-old daughter doesn’t. We encourage the younger one to talk about the older one’s condition openly… So if anybody tuts or comments etc, our youngest can tell them what’s going on”; or “Smile, nod, ignore” (Mumsnet, n.d.): not fighting every battle, but only the essential ones; and trying to sidestep the opportunities that others have to cause tension, such as relatives who would do something a different way (Netbuddy 2014). Some sources recommend a “disability rights” approach, which might help to give children confidence if approached well;
- some strategies to build children’s own resilience and self-confidence are suggested in the earlier article “Childhood changes: a way of thinking”;
- lastly, one article says “We must be aware of the effect our responses have, but not stifled by self-consciousness” (Butler, 2005).
Brignell, Victoria (2010) When the disabled were segregated, (New Statesman magazine, 15 December).
Butler, Sarah (2005) Coping with other people’s reactions to your disabled child, (Talking Sense magazine).
Cameron L. and Rutland A. [n.d.] Changing children’s attitudes towards disabled peers through extended contact. Canterbury, University of Kent.
Disability Action (2015) Self-Confidence and Assertiveness course.
Disability Matters, has a set of free e-learning modules on aspects of disability. Among these, the “Environmental challenges matter” module includes dealing with attitudes of other people, and “Reflection matters” includes the reader’s own attitudes.
Griffiths M. (2011) Media and Disability. [Privately published].
Office for National Statistics (2014) Life opportunities survey, understanding disability wave two, part II.
Pfeiffer, D. et al. 2003. Attitudes toward disability in the helping professions. Disability Studies Quarterly 23(2) (Society for Disability Studies).
Smith, Patricia McGill (2010) You are not alone (originally NICHCY National Dissemination Center for Children with Disabilities).