Changing beliefs about disability in BME faith communities
Families of disabled children must have a voice in government
It is essential that all parents and carers of disabled children can participate in decision making, including those of minority ethnicities and cultures. Over 50% of children with disabilities in Greenwich are in BME families (figures provided by the local authority) and yet these ethnic groups are the least likely to engage with service providers such as health, education and social care.
Non-acceptance of disability in BME communities
Parents tell us that there are problems with accepting disability in some BME communities. Disabled children can be a source of shame, a sign of insufficient faith or a curse. Parents are told that their children can be 'cured' through prayer. Disabled children are not always welcome at their church services. Parents are fearful of taking their children to church services if the child presents challenging behaviour, is noisy or just appears to be different.
The church is at the centre of the community so from this comes a general feeling of rejection and stigma which causes the family to withdraw. Isolation creates further problems including stress, poor health and family breakdown.
Head teachers report that parents will not engage with the school and may not accept a diagnosis. This obstructs support for the child at a time when budgets already under pressure from funding cuts and increasing numbers of students with SEND in the classroom. Without the parent-school partnership in place, the outcomes for children are bleak.
Young people who with the right support could have gone on to find rewarding jobs or enter further education and be happy, valued members of society end up excluded, isolated, with metal health problems or even in prison. This is a tragic waste of potential and life.
As a response to this under-reported problem, Greenwich Parent Voice is working on a project to promote a positive message about disability specifically in BME communities. We hope to engage and inform parents, bring them together in their communities and put them back in control of getting the best support for their children and families.
Step 1: A safe space for parents and carers to come together
The first step has been to identify a school in Thamesmead, Bishop John Robinson Primary School, with a largely BME cohort and a welcoming SENCO. Josephine Tontoh (see photo) is our Parent Leader in this school and holds a regular coffee morning for parents in the area. For some parents this is their first contact with other carers of children with special needs. Parents are able to talk freely and without judgment about all the issues facing them such as challenging behaviour, sleep difficulties, getting respite, and securing the right support in school for their children.
We consult and speak with Anne Christopher who is a Parent Leader for GPV and also runs the highly valued 'We Listen' support group for BME carers of children with autism in Greenwich. Anne provides insight from her work talking to and supporting parents. Also involved is Joyce Brako-Amoafo who is a friend of GPV, a member of Lewisham Parent Carer Forum and on the committee of the National Network of Parent Carer Forums. Joyce is committed to changing perceptions of disability in BME communities.
Step 2: Getting the support of church leaders across all faiths
As a starting point, GPV has approached the Diocese of Southwark for help in reaching members of the faith community in Greenwich. We are working with Hugh Ridsdill-Smith, Consultant working for Diocese of Southwark: Children and Young People’s Mission and Ministry in developing a message and communicating this to church leaders in the area.
On 28 November 2017 we presented the project to the Church Leaders Network Meeting hosted by Borough Dean, Mike Leader. The Royal Borough of Greenwich kindly allowed us to use the beautiful Gallery space at the top of the Woolwich Centre.
Jo Tontoh and Vivien Davies from Greenwich Parent Voice alongside Hugh Ridsdill-Smith of the Diocese of Southwark presented this pioneering project to the Greenwich church leaders at their network meeting in November. We brought along representatives from the local authority: Joan Lightfoot, Head of Integrated Children’s Services for RBG, Bola Obode, Social Worker for Disabled Children RBG as well as reps from community groups and organisation working with these communities: Nskian Udofia, NEMFLA (Meeting the Needs of Ethnic Minority Families Living with Autism), Mat Ray, Church Partnership Lead at Livability and Barbara Wilson, Child and Family Support Services Manager at Welcare. Jo Tontoh of GPV is mum to a young girl with cerebral palsy living in Thamesmead. She described the problem from her own experience.
Attendees were also given a letter written by Kenneth Maslin, Headteacher at Bishop John Robinson Primary School in Thamesmead. This was an impassioned plea for action from faith leaders in promoting positive messages about disability so that schools can make sure that disabled children reach their full potential. You can read this letter here, click on the letter image to read a full size version.
As a take-home gift, everyone was given a GPV pack with useful information about sources support for parents. We will be taking this presentation to other faith leaders in 2018.
Step 3: Embracing Disability Service, May 12th at Woolwich Polytechnic School, hosted by the by Greenwich Church Leaders.
The highly-anticipated family service and celebration lunch held on Saturday in Thamesmead in Woolwich Poly was a huge success; a really joyful coming together of parents and carers, children, church leaders and support organisations. It was our great privilege to host these wonderful families and hear their voices. Thanks to the Diocese of Southwark's Hugh Ridsdill-Smith and Greenwich Church Leaders for making this pioneering event possible.
As one of our parents put it " Disability IS an ability - and it is precious." It was lovely to see so much love and pride in our children in evidence.
Parents and their disabled children should always feel welcome and valued in their places of worship. Church leaders must be challenged to make adjustments, be sensitive to the needs of children of all abilities and lead by example in communicating the theology that supports a message of love and acceptance.
Photography by Barry Cole
Step 4: Making a film to share widely
We are planning a short film, based on the special event, and with testimony from parents and from community leaders, to share the message more widely online and on social media.
We think this completely new initiative could help families not just in Greenwich but in any community where this problem exists.
For this project to work, we need your help! If you are a journalist, charity, politician, teacher, community leader or an interested parent/carer, please get in touch.
Vivien Davies and Joanne Delap
An NAS report into the challenges for families affected by autism in Black, Asian and Ethnic Minority families.
BBC News: Infanticide in Kenya " I was told to kill my disabled baby"
A new study in Kenya carried out by Disability Rights International has found that 45% of mothers interviewed faced pressure to kill their babies born with disabilities.
Thirty seven percent of the women surveyed from Nairobi said they were pressured to kill their children with disabilities while fifty four percent of women from the more rural areas felt pressure to kill their children. Sixty three percent of all women surveyed stated that they were told “your child is cursed.” Read the full report here: https://www.driadvocacy.org/wp-content/uploads/Infanticide-and-Abuse.pdf