Parent perspectives

Among parents and grandparents of disabled children all over the world a major concern is what happens to their children when parents get older.

"What will happen to my disabled grandchild when I die, who will support him?”

This question was asked by a Cambodian grandmother who attended the third Roundtable meeting, held in Cambodia, May 2005; she wanted education ministry personnel from Cambodia and Laos to provide an answer.

The parents at the roundtable event were keen to discuss ways of engaging with the different stakeholder groups at the meeting. They also wanted to hear about new ways in which they could be involved in their children’s education. The roundtable meeting gave them a chance to express how they feel about their children’s and grandchildren’s education, to share their thoughts with others and to help to make sure that other parents of children with disabilities have a choice in their children’s education.

One of the Cambodian parents made the point that the school system was not always helpful, but that there are other ways of securing support. For example, the parents realised that health organisations, Non Government Organisations (NGOs), and community members also have a role to play in supporting disabled children and their families. In fact, some of the parents had already received a great deal of support from staff at the Centre for Child Mental Health (Caritas-CCMH) in Cambodia, and there are plans to include parents in the governing body at CCMH.

Focus on education

“What are the barriers that stop your children participating in mainstream schools?”

This question was posed by a group of 'international donors' to the parents during an ice-breaking exercise on the first day of the roundtable (more on this can be found in the 'Any questions at the roundtable?' story).

Two mothers, who attended the roundtable gave their stories. They talk about the barriers they have faced in securing the right to education for their children and grandchildren. Both children have learning difficulties, and although both were admitted to their local schools, they experienced difficulties in the schools.

Story 1: Sitha (read Sitha's full story here >>)

Sitha has three children, two daughters and a son who was born healthy and strong, but suffered a head injury as a baby and now has learning difficulties. He was unable to speak until the age of six. Now aged 14 he engages in activities of daily living, but finds it difficult to understand complex instructions and to relate to past or future events. He attends a mainstream school, but has spent seven years in the first grade.

“The teachers have not been supportive or understanding of my child’s needs”, Sitha says.

However Sitha is determined to ensure that her son has every opportunity to lead a full and active life and is hopeful that he will have a career when he grows up. She employs a private tutor for him and is thankful that she has the resources to help her child. Her experience has also shown her that some schools do not have enough facilities for children with severe disabilities and teachers in Cambodia often lack the expertise to deal with children who have intellectual disabilities.

In this account, Sitha highlights the inflexibility of the education system and of the teachers’ attitudes. Her son only began to talk when he was six and presumably would have benefited from early stimulation and a pre-school curriculum. However he went to his local school, where the teaching was probably very formal, and he stayed in the same grade for seven years because he was unable to pass the exams. Despite the unhelpfulness of the education system, he has successfully learnt some of the key life skills associated with daily living – presumably from his mother.

Sitha identifies the lack of expertise and training of mainstream teachers in responding to the needs of children with intellectual disabilities and the lack of specialist facilities in schools as two of the main barriers to the inclusion of disabled children in education.

Sitha’s response to the difficulties faced in the education system was to invest resources in educating her son privately – such is her faith in the potential of education to transform lives. She is determined that her son will succeed in life. It is such determination which can empower parents to fight for the rights of their children to access education.

Story 2: Simorne (read Simorne's full story here >>)

In the following story Simone also describes the way in which the education system failed her daughter; her daughter too had to remain in the first grade for many years.

Simone is the mother of a disabled daughter and the grandmother of a disabled grandson. In 1979 she was taken to the Thai border by Khmer Rouge soldiers where she gave birth to her daughter in conditions of extreme hardship and poverty. Following an incident when her daughter was badly shaken by a soldier she began to show signs of having learning difficulties. In 1985 Simone returned to Phnom Penh, and encouraged her daughter to attend a local primary school. She stayed in the first grade for five years because she was unable to pass the end of year exams and she received little support from the school. At the age of thirteen her daughter was raped by her adopted brother. She became pregnant and later married him. When their son was three he fell while playing and was later diagnosed with learning difficulties. Simone later discovered that her daughter’s husband was physically abusive, so she insisted that they separate, although this was considered unacceptable in the community. Simone is immensely proud of her daughter and grandson and fights hard to overcome the prejudices and fears of other people.

Educating the wider community
Simone, like Sitha, has experienced discrimination because of her child’s disability. They both identify prejudice and negative attitudes as a major barrier to progress and to acceptance in the community. In addition, Simone had to cope with the physical and sexual abuse which her daughter suffered – again something which is very common worldwide. In the continuation of her story, Sitha describes how hurtful it can be when her son is called names. She believes that education can play a part in combating such discriminatory attitudes.

Sitha feels that prejudice against people with disabilities is the main obstacle preventing her son from enjoying his life. She battles hard to help people overcome their fears and feels that schools have a large part to play in educating pupils and parents about tolerance. She says: “At times people have been very cruel to my child, shouting at him and calling him names, but how do they know they won’t ever become disabled, isn’t it better to show some understanding and kindness?”

Mountain commentary
During the roundtable the parents drew a mountain pathway that included the parents’ warmth and commitment to their children as a strength. Threats, represented as boulders, included the difficulties parents faced in making decisions for their children and a lack of encouragement from governments and communities to send their children to mainstream schools. (more on the mountain drawing exercise can be found in the 'Any questions for the roundtable?' story)

Resources on parents’ issues
There are only a few resources about parents’ issues and the contribution parents can make to education. The following two resources and web sites may prove useful, however. They can also be found on the inclusive education key list on the Source website

1. Family action for inclusion in eduation, by the Enabling Education Network (EENET), 2002, 120 pages. The publication is free to South-funded organisations and individuals, £5 for others
This publication contains stories of family-based advocacy organisations which have helped to transform education systems in southern Africa, South Asia, Europe and Australia. The guide is especially useful for family and community members who may feel isolated and want to form a support group or advocacy organisation, and also for teachers, teacher educators and policy-makers. It will soon be available electronically on the EENET website

Contact:
Enabling Education Network (EENET)
Educational Support and Inclusion (ESI), School of Education, University of Manchester, Oxford Road, Manchester M13 9PL, UK
E-mail: info@eenet.org.uk
www.eenet.org.uk

Link to resource: www.eenet.org.uk/newsletters/news7/
page12.shtml

2. Let our children be...a collection of stories by Murry, P and Penman, J (Eds), 1996, 98 pages. The publication costs £5, from IBK Initiatives Ltd
An inspiring publication which, although set in the context of the UK, is simply written and accessible to a wider audience. It contains a collection of stories written by parents about their children's experiences of exclusion and inclusion. The stories express the often emotional journeys towards inclusion these parents have taken.

Contact
IBK Initiatives Ltd 5 Moor View Drive Sheffield S8 0HL

Useful organisations and web sites include:
Enabling Education Network
EENET is an information-sharing network which supports and promotes the inclusion of marginalised groups in education. It has a section about ‘Parents’ on its website. This includes various stories and training materials, including ‘Family Action for Inclusion in Education’ (see below).
www.eenet.org.uk

Inclusion International
Inclusion International (II) is a global federation of family-based organizations which advocates for the human rights of people with intellectual disabilities and their families worldwide. II is a member of the International Disability Alliance and is organised into 5 regions: Africa and the Indian Ocean; Middle East and North Africa; Europe; the Americas; and Asia Pacific.
www.inclusion-international.org

Parents for Inclusion
Parents for Inclusion (PI) is a network of parents of disabled children and children with 'special needs' in the UK. PI works together with disabled people to build inclusive communities in ordinary life, where all people are truly welcome.
www.parentsforinclusion.org.uk

Source
Inclusive Education key list is now on the Source website at
http://www.ids.ac.uk/sourcesearch/cf/
keylists/keylist2.cfm?topic=dis&search=QL_IE05