The influence of faith and culture on attitudes towards special needs
I’m sure everyone would agree that a truly holistic assessment of the needs of a child with disabilities or SEN should take into account the family circumstances, but how well is the impact of faith and cultural background understood?
This article sets out some of the issues and also the responses available to health, social care and education professionals working with children, young people and their families from different faiths and cultures. There is also a checklist to use in identifying gaps and developing local action plans.
A complex issue
The first thing to say is that this is a complex area. There are variations within faiths, as well as between them, and it is too simplistic to speak in terms of, for example the Muslim community or Christian community. In addition to specific sub-groups or denominations, there will be degrees of adherence to the principles that define a set of beliefs. Within families, there could well be generational variations, often with younger members of the family taking a more liberal or westernised stance. Mixed marriages can add yet another level of complexity. It is also important to understand the beliefs of the disabled child him/herself.
Variations can also arise in times of crisis, such as at the time of the child’s diagnosis, when parents may tend to the extremes of their beliefs, from rejection of the faith to fervently embracing it. There can be a reversion to the core culture, so that practices perceived as tried and tested, or handed down through the generations, are given greater credence, particularly where the special need causes the parent to question their own skills. Clashes between cultural norms and UK norms enshrined in legislation may arise. This may be evident in areas such as physical chastisement and forced feeding, for example, putting the child at risk of harm.
Behind all this is a simple concept: that beliefs drive behaviour. To understand why a person behaves as they do is to understand the complexity of their belief structure. As professionals, we need to take the time to explore this area with families and to understand the influence of faith leaders and the community as a whole.
Why do we shy away from discussing these issues? Is it fear of offending or stereotyping families or of being branded as racist or insensitive? Is it that we feel we should know more about other cultures than we really do?
As part of this quest for understanding, professionals are advised to explore their own cultural competence: to identify experiences that have shaped their personal knowledge and understanding of different faiths and cultures. Your cultural competence is the lens through which you look at and interpret the world. A greater awareness of your own influences will enable you to work more objectively with those who have a different background to your own. Cultural competence increasingly features in the training of front-line health and social care professionals and is a good INSET topic to explore.
Perceptions of disability
Compassion, love and support for the vulnerable are common themes across all faiths. Having a faith and belonging to a community can provide social capital for a disabled person. Professionals working with local community groups have the opportunity to contribute to the building of a strong and enduring support framework for the family.
However, religions offer differing, and sometimes confusing, views of disability; for example, disability can be seen as a manifestation of “the sins of the father” and a form or punishment, or it can be approached from the point of view that each person is created equal and in God’s image. Families may believe that the child with SEN is a special gift that has been entrusted to them, that there is an innocence about the child that gives him/her a more direct relationship with God, or that the parents’ faith is being tested. Both of these stances can pose a risk to the child, if taken to extremes.
The family of a disabled child in a church with a strong belief in the healing power of prayer could feel isolated and embarrassed when they are not “cured”, potentially leading to a risk of physical or emotional abuse as the child’s difference separates him/her from the community.
Where there is a belief in malign influences, actions may be taken to expel the spirits possessing the child which are believed to cause the disability. The emotional and psychological consequences of being labelled in this way can compound the family’s difficulties within the community.
Cultural stigmas may result in denial or concealment of the child’s condition and so limit access to services, treatment, therapies and medication. Where provision is limited, professionals might inadvertently collude with families who express a wish to keep their child away from public services. The challenge for professionals is to work with the family to overcome and change the views of the wider community.
Faith communities may have particular difficulties in accepting and including children and young people with conditions that may have behavioural manifestations, like autism, Tourette syndrome and bipolar disorder. Even where there is a broad understanding of the condition, it may be difficult for faith communities or leaders to understand that these manifestations will continue to be evident in places of worship, manifesting themselves, for example, in shouting out during times of quiet reflection, distress if the running order changes or difficulties in following the metaphors used in Bible stories. You cannot leave the disability or special need at the door.
Perceptions of “normal” child development can also vary greatly. One parent spoke to me of their Hindu temple as a lively place where groups of energetic children are welcomed and not expected to sit quietly. Children with ADHD or autism fit right in and do not draw particular attention to themselves. It is only as they grow older and there is a greater expectation to conform that the child’s differences become more apparent. This may also be the case in more charismatic churches where worship encompasses physical expressions such as dance, speaking in tongues or falling down in the power of the Holy Spirit. In one case, I was told that the uninhibited behaviour of an autistic boy enabled the person supporting him to engage in freer worship herself.
There are many examples of families of children with disabilities and special needs who find themselves ostracised from or unable to participate in their faith community. However, there are also stories of hope, where inclusion is understood as a key tenet of the faith. Special needs ministries that include, rather than segregate, are emerging. In really exceptional cases, such ministries can include respite for parents and responding to the needs of siblings too.
In SEN terms, there is much to be gained through cooperative relationships between schools, professionals, families and faith communities so that effective strategies can be transferred across different settings. For example, the use of social stories, consistent application of behaviour management strategies and even the sharing of equipment and resources can all be helpful here. I have seen this work effectively across faith based youth groups and schools.
Representatives from the faith community could also be part of the extended family, taking on trustee roles when personal budgets are in place for young disabled adults. I ran a workshop on understanding personalisation for voluntary and community groups recently and was pleased that it was predominantly attended by faith leaders who saw this as a key part of their pastoral role and were keen to explore practical ways to pursue it.
Responses to cultural difference
Belief systems may carry with them some very practical issues. For example, medication containing preservatives based on porcine, bovine or opioid products will not be acceptable in some faiths. Blood products and transplants may also be excluded. Suffering may be seen as part of life’s process, with a resultant view on the use of pain relief. Creativity on the part of health professionals is needed to find alternative responses and, in some instances, the medical view may prevail.
Where English is not the first language, the issues may be less around beliefs and more about support to describe the child’s needs, to interpret information provided and perhaps to implement complex instructions or therapies. This is another area where working with community groups, through interpreters and building up the skills of advocates, can be beneficial.
I have worked with one London borough which has invested in disability awareness training for supplementary schools with the twin aims of enabling the schools to include disabled children effectively in their own group lessons, and to increase parental awareness and confidence in engaging with mainstream schools.
Creative local commissioning can provide culturally appropriate and cost-effective disability services. Another approach is to ensure that services are sensitive and accessible across a range of belief systems. This requires some knowledge of the barriers that could exist. For example, I know of a Hindu father who was reluctant to allow his daughter to attend a siblings group set up to provide a break for brothers and sisters of disabled children. The concern he had was around the presence of boys and group leaders of different faiths.
Checklist: understanding cultural diversity
The following questions will help you to evaluate the extent to which you are responding to the needs of families whose faith and culture differ from the host nation.
- Do you gather information on the faith and culture of the disabled children and young people you work with?
- Does the faith and cultural profile of the families you work with reflect that of the local area?
- Would you expect particular faiths and cultures to be better represented in your figures?
- How do you engage and work with the voluntary and community groups that support families of different faiths?
- Is there scope for co-production of services through partnership arrangements between faith groups and the public sector?
- How far are local forums for disabled children and their families reaching and representing families from different communities?
- Do you undertake equality impact assessments in the development of new services or the decommissioning of existing services?
- How accessible are your services to people from different backgrounds?
- Is there a need for more inclusive services and for some culturally specific provision?
- Have you examined your own cultural competence and that of your team?
Karen Walkden is a chartered psychologist, working part-time as Business Manager for ASEND, providers of SEN advice, assessment and support services to schools: