Phillipa Russell (pictured) is mother to Simon, 43, who has learning disabilities. She is also a disability rights commissioner, an adviser to the NCB and a member of National Learning Disability Task Force. Maria Ahmed spoke to her
What has been the most difficult experience for your son?
Coming back from living in Central Africa where Simon had been fully included in the nursery school and the life of the community to find that he was regarded as “ineducable” in the UK. With other Mencap parents, we lobbied for amendments to the Education Act 1944 and finally achieved the Education (Handicapped Children) Act 1970. It paved the way for changes in the education system and in our expectations of people with learning disabilities. The experience also taught me that ordinary people can change the system if they work in partnership!
What is the most important lesson that your son has taught you?
Simon has taught me, and all his family, to see everybody as people first and to value their unique talents and abilities. He has
also taught me that, if we make reasonable adjustments to the way we offer education or employment, people with learning disabilities have huge commitment and the potential to achieve.
How have attitudes and services to children with learning disabilities changed since your son was born?
Simon was born in 1963 – his birth coincided with the assassination of President John F Kennedy in the USA. Attitudes in the UK in the 1960s were anything but liberal. There was widespread discrimination and no right to education. But the world was changing.
In 1990, we were all invited to the 100th birthday party of Rose Kennedy, mother of John F, in Hyannis Port, Massachusetts.
She was one of the first influential parents to “speak up” for her daughter and other people with learning disabilities and we were
among her international correspondents.
Her words to us, as to her son the president, were to “do something”.
In the 1970s and after, attitudes changed. The right to education, determined parents and disability discrimination legislation
changed both aspirations and expectations.
And, most importantly, people with learning disabilities are themselves now working to change the world. The self-advocacy movement has made a huge difference.
The Valuing People white paper is being reviewed. What children’s policies need strengthening?
We need to review how we can best balance specialist and mainstream services to give children and families proper choices and
sustainable support at every life stage. I hope that this review will include a reappraisal of the extent to which children with
learning disabilities are achieving the five Every Child Matters outcomes.
How would you spend the government’s pledged £340m for disabled children to ensure that children with learning disabilities benefit fully?
The government’s priorities for the money pledged are right. The Treasury review Aiming High highlights child care, short
breaks, transition, and key-workers among its priorities, all of which vital if we are to improve the life chances of disabled children. I welcome the proposals for a “core offer” for families with disabled children and, importantly, a new national indicator
on disabled children within the local government performance management framework.
Are schools getting it right for children with learning disabilities?
There have been major improvements in the education of children with learning disabilities in recent years but there are many challenges ahead. There are ongoing debates about inclusion and the role of special schools, and about assessment, as well as shortfalls in specialist support, therapies and equipment. There are also exciting developments: improved early years provision, the children’s centre and the extended schools agenda, and a real interest in developing a skilled workforce. However,
concerns remain about improving inclusive policy and practice. But the Disability Discrimination Act duties have made a difference. As an “older parent”, I am hopeful!
In three words, what would your message be to Ed Balls about what he must do for children with learning disabilities?
Can I have four words? “Every disabled child matters.” And if I could have a further three words, I would say “recognise their
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This article appeared in the 2 August issue under the headline “My son taught me to see people first”