Claire’s story told by Pat Dolan
Just like any other mother to be, I had dreams for the child I was carrying. Everyone in the family wanted a girl, especially Tom. Tom said of course she would be beautiful. Her older brothers, 23, 21, and 12 also had plans for the new baby. We had all waited hopefully over the years for this much wanted child, and at 43 I thought it was my last chance to have a baby.
To everyone’s delight, I delivered a girl. You can imagine how joyful we all were, and especially me.
Claire progressed like most children, she smiled, chuckled, said Da-Da, waved bye-bye and bunny hopped; she was either a joy to everybody or making a nuisance of herself.
I didn’t start to get anxious until she was about 12 months old. She was not progressing. Claire would just sit happily smiling, never wanting to play with her toys. We bought her every different plaything imaginable; we were sure that each new one would be the one that would trigger things for her.
She hardly ever cried – Claire was so pleasant with everyone. People kept telling us how good she was and such a happy baby, but once we overheard friends saying “But is that normal?” and alarm bells rang. We went on holiday. We stayed in a hotel where we could put Claire to bed and monitor her at night. All we ever heard was her chuckling to herself. When we went on the beach we would see toddlers about her age who would be playing in the sand and toddling about – I can remember Tom asking them what age they were and comparing them to Claire.
Those alarm bells started to ring again and I knew I had to go and see a Paediatrician someone who really knew what they were talking about.
At 12 months old, the Paediatrician told us that our happy smiling baby was severely disabled, and unlikely to ever walk or talk. We both left his office in deep pain. I will never forget those next weeks: we could hardly communicate with each other; we were blown apart. She couldn’t be as bad as he said, could she? How did he know? We would find another specialist. Perhaps he would tell us something different, that she was not so disabled. The loss of our dreams for Claire was devastating, we were frightened by the idea of disability, of which we knew nothing, but hardest to bear was the fact that friends could not talk to us.
We knew nothing about disability, we’d never needed to. I’d never known anyone with a child who was disabled. I remember seeing those dreadful school buses with lots of people looking odd with awful haircuts and badly dressed, the sort of thing where you look away quickly in case anyone sees you looking. Just grateful it wasn’t your child or anyone you knew. These were the fears and prejudices we grew up with. We saw it as a personal tragedy, which must be coped with by the parents.
We consulted many professionals, wanting the best for our lovely daughter. We were constantly told we did not understand our daughter’s disabilities, and didn’t realise she would always be a burden and we certainly didn’t realise how difficult it would be as Claire got older. We were told that like a lot of parents, we were in denial. Whatever we did was frowned on.
For the next few years I was amazed how frequently the word ‘never’ crept into people’s vocabulary when talking about people with disabilities. Professional people seemed anxious to use it usually coupled with the word ‘afraid’. For example “I’m afraid your daughter will never be independent” they would say, or “I’m afraid your daughter will never talk or be able to attend a normal school”. From the age of 2, we were advised to take her away from our normal community, via special nurseries, schools and activities. We intuitively felt this was wrong, but initially followed the advice of the experts. The professional view about disability is based on the myth that they are a burden, abnormal and must be treated differently. Such attitudes only perpetuate exclusion.
We were uneasy that we were expected to taxi her away, without me, at an age when I had kept my non-disabled children with me. It didn’t make sense to us that Claire would be best helped surrounded by other children who couldn’t do the things she couldn’t do.
We then found Charnwood, a progressive and inclusive nursery, which gave us a respite from our isolation for 3 happy years. I was able to dream again, I had a vision, it was clear to me. The vision was for Claire to lead an ordinary life with her friends in an ordinary school. Very few people understood this vision; they thought of it as a castle in the air. That vision over the years dimmed occasionally, and altered a great deal, but it was not a fantasy. It did materialise.
At 5, Charnwood ended, and we handed Claire over for 2 unhappy and distressing years at Special School, before being brave enough to believe we knew what was best for Claire and winning the battle to attend the local mainstream school.
We were amazed at the reaction of the other children, who accepted her unconditionally, pushing her, petting her, and giving her wheelies in the playground. We soon realised it opened up whole new world for her. She was invited to parties, children would call at our home to see her, she herself became a different person: she was much happier and calmer, our whole household became a much happier place.
Some teachers were apprehensive and nervous; some were brave enough to admit this to us. We told them we just wanted her to be included.
Until then we had colluded with the medical model that sees the disabled person as a problem, and began to learn that inclusion is not just about including the disabled, but all people whom we find different or difficult to tolerate.
Claire attended Primary, Secondary and Sixth Form College with the same class, who became her friends, spontaneously including her in their lessons and recreation, recognising that Claire, who could neither walk or talk, was a valuable member of society. Claire was not just tolerated, lessons were often focussed on her, eg CDT made ramps for her, Art classes decorated her wheelchair. The children altered their games to include her, gave her drinks, put her coat on, sent her postcards, rang her up from holiday. During the fight for her to be accepted by the Secondary School, several parents of Claire’s classmates wrote letters of support, asking for her inclusion, detailing the benefits Claire brought to the whole class.
As Claire and classmates grew, they would take her out shopping and to the pub, frightening for us, but we knew these were wonderful experiences for Claire.
When she left Secondary School, and the Head said “I didn’t think when Claire came here we could offer anything, but not only has she received a great deal from us but she has given us so much more” the parents stood and applauded.
The friends she had made at school remained her friends for life, until she died age ??
A classmate wrote:
It is difficult to put into words how sorely you will be missed. I can only say how thankful we all are to have been part of your life, and you a part of ours.
Inclusion is about being part of a circle of friends.
Inclusion is about being missed when you’re not there.
Inclusion is about being human and being in a relationship with one another.
Read Claire’s full story at