IBK stands for ‘Inspired by Kim’. Son of Pippa Murray, Kim died in 1998 as a result of his many and severe impairments.
Kim was fifteen when he died. IBK came into being shortly after this as a response to Pippa’s own family experience of impairment and disablement, and the continuing exclusion of others in similar situations. This grounding in lived experience, together with IBK’s ongoing engagement with current thinking, policy and practice, give a perspective informed by heart and mind, allowing nothing to be taken for granted in the search for ways of being that include us all.
‘My Child’ is a poem written by Pippa about her experiences with her son, and published in Let Our Children be – A collection of stories in 1996. Sadly the issues she raises are still relevant today.
The following descriptions of Kim were taken from professional reports and comments on the one hand; descriptions by family and friends on the other.
- He shows a moderate developmental delay at two years eight months, with skills falling a little further behind due to a developmental plateau.
- Kim’s a toddler with a great laugh and a lot of energy.
- He is showing a marked developmental regression.
- Kim tries so hard all the time. He never gives up.
- He has severe intractable epilepsy and will need to be placed in a special school with a special care unit.
- Kim is an ordinary lad who needs to do ordinary things with all other children his own age.
- He is very passive.
- Kim is so easy to be with.
- He has autistic tendencies.
- Kim communicates so beautifully.
- He is often uncooperative.
- Kim is easy going.
- He can’t behave like that. He simply has to stop!
- I love it when he gets excited. His enthusiasm is so infectious.
- He needs respite care.
- Kim needs baby-sitters and friends.
- He has frequent seizures. These constitute a major problem.
- Kim has frequent seizures. They are a part of him.
- He has complex communication difficulties.
- Being with Kim allows me to be myself – to get away from all peer pressures, and pressures of the world.
- He has severe learning difficulties.
- Kim teaches me more than I can ever teach him. He is the best teacher I’ve ever had.
- He has co-ordination difficulties. He does not have full mobility.
- I love the way Kim moves. When he is very poorly and lifts his arm so slowly I wonder at the grace of his movement.
- Due to his severe epilepsy he has variable function.
- Sometimes Kim is energetic, sometimes he’s tired.
- Due to his problems the family will experience great strain over the summer holidays.
- No professionals for six weeks. Hooray!
Since IBK was set up as a formal organisation in 2004, we have engaged in many projects. The fight for equality is at the heart of all our work. At the present time (2022) our work is mainly centred on supporting people who have a Direct Payment and/or Personal Health Budget. We also run a personalised education programme for young people receiving a budget for education out of a formal school setting. Both these strands of work are close to Pippa’s heart: she and her family lived a lifestyle entirely suited to self directed support; and Kim was home educated as Pippa declined to send him to a residential school 300 miles from their home.
Things have changed since Kim’s lifetime. Sadly the progress made in some areas is tempered by the regression in others. We recognise the impact the present crisis in social care is having on disabled children & adults and their families. We know how cuts in social care make support more fragile and insecure. We have seen our systems of education, health and social care fail to achieve equality for disabled people. Our founder and Chair of Trustees, Dr Pippa Murray, continues to be involved in campaigns challenging the status quo, raising awareness and developing peer support.
