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ASEND Article for SEN Magazine

The following is an extended version of an article written by Karen Walkden, and submitted for inclusion in SEN Magazine in December 2011.

Faith, Culture and Disability

Nobody can argue that a truly holistic assessment of a disabled child needs to 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 responses available to health, social care and education professionals working with disabled 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 simplistic to speak in terms of eg 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 westernized stance. 

Variations also arise in times of crisis – such as the diagnosis of a child’s disability.  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 disability 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.

At the root is a simple concept – that beliefs drive behavior.  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.

Cultural competence 

Why do we shy away from these conversations?  Fear of offending or stereotyping families, of being branded as racist or insensitive?    A feeling that we should know more 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 the world, and interpret information in front of you.  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, a manifestation of “the sins of the Father”, and a form or punishment – or each person is created equal, and in God’s image.   

Families may believe that the disabled child is a special gift that they have been entrusted to care for, that there is an innocence about the child that gives them a more direct relationship with God,  or that the parent’s 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 differentness separates them from the community. 

Where there is a belief in malign influences, actions may be taken to expel spirits possessing the child, and believed to cause the disability.  These can become physical and extreme – as seen in recent high profile cases.  The emotional and psychological consequences of being labelled in this way 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 then professionals might well 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.

Responses

Some very practical issues may sit alongside a belief system.  For example medication containing preservatives based on porcine, bovine or opioid products will not be acceptable in some faiths.  Similarly blood products and transplants may not be accepted.   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 then 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’ve 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.

We secured lottery funding for a local group supporting BME families with disabled children to set up school based parent support groups, facilitated by trained volunteers from the BME community.    The outcomes include an increase in the uptake of local services by BME families, who can find navigating their way through the various forms and processes intimidating.   Increased confidence on the part of parents will result in better advocacy for their disabled children.

Creative local commissioning can provide culturally appropriate and cost effective disability services.  A good example is Ronak, an Asian project run by Barnet Mencap, and Salaam, an inclusive scout group providing Islamically sensitive short breaks for Muslim families.

Culturally specific provision is one way to go – but the other 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.   One real example is the reluctance of a Hindu father 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

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.

• ü  Do you gather information on the faith and culture of the disabled children and young people you work with?
• ü  Does the faith and cultural profile of the families you work with reflect that of the local area?
• ü  Would you expect particular faiths and cultures to be better represented in your figures?
• ü  How do you engage and work with the voluntary and community groups that support families of different faiths and cultures in your area?
• ü  Is there scope for co-production of services – through partnership arrangements between faith groups and the public sector?
• ü  Aiming High for Disabled Children has provided funding to establish forums for parents of disabled children – how are these groups reaching and representing families from different communities?
• ü  Do you undertake equality impact assessments in the development of new services or the decommissioning of existing services?
• ü  How accessible are your services to people from different backgrounds?
• ü  Is there a need for more inclusive services – and some culturally specific provision as well?
• ü  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 SEND advice, assessment and support services to schools.