Paula and her daughter, Jennifer. Essex
She’s had problems since birth, but she could walk until 2004. Then she broke her thigh. It fixed badly, so now she can’t stand at all.
When Jennifer was born, the doctors didn’t think anything was wrong at first. I was the one who kept going back to the doctor saying ‘this isn’t right’, ‘milestones aren’t being passed’, things like that. Until finally I had a wonderful doctor who actually listened and referred her to a paediatrician. It turned out she had her own unique condition, the results of duplication of part of the chromosome It did take seventeen years before they finally diagnosed her. (Read more)
Mary and son, James. Kent
Mary: “I couldn’t live without my diary. If you saw it, you’d see why. It holds us together. We’re so busy, busy, busy between hospital appointments (both of us), the farm where he works, college, dancing, football, psychotherapy, theatre, haircuts, dentist….it’s just mad. I fit round James really, as I’m purely his carer.
I help run the “Five-a-side Fun” football team he plays in, I take him to dance which he loves (when he gets there – sometimes it’s a struggle on the way), I take him to the local Rare Breeds farm where does all sorts of things like cleaning the animals out, grooming, feeding, and caring for them in general. He likes the horses, the shire horse especially. He’s not overly keen on the chickens. They peck. Two days a week, he’s down there. He’s the life and soul of it.
Obviously he’s got Down’s Syndrome plus hearing difficulties, speech difficulties and ADHD but he’s not a label. He’s just him. I hate the word normal. So I made up my own funny word. He’s diff-abled. Not disabled. We’re all diff-abled in one way or another. (Read more)
Bett and friend, Ann. Hertfordshire
I just love walking. I can’t do it without my walking trolley to hold on to but as long as I can use it I can go anywhere. I’m 82 and exercise keeps your fitness up. I can do 2000 turns in half-an-hour on my static bike in the hall – singing aloud all the time. Nothing gets me down. You go down and it’s a long way back up again. When you’re a carer you’ve just got to keep going.
I looked after her husband Ian for 28 years following an accident on his moped which left him with a serious brain injury. And I cared for my daughter Susie for 50 years following a difficult birth. Now I mentor for Carers In Herts and run a choir for children with learning difficulties as well as looking out for my good friend Ann who goes on the Stepping Out Walks with me for a bit of fun all over Hertfordshire. (Read more)
Mark and wife, Emma. Doncaster
My wife Emma was diagnosed at two with epilepsy, then she developed bipolar and the fibromyalgia came on about two years ago. She can have a fit at any time but we’ve got this alarm system that registers she’s fallen and so I am able to do a part time job a few hours a week as a support worker for autistic children. It’s good to get out and do something different. Otherwise we’re indoors together. Maybe watching tele. But she can be in bed a lot of the time so it’s quite lonely sometimes.
That’s why I’ve chosen a pint of lager as my object. It reminds me of having a laugh with my mates and just relaxing for a while. There’s a few pubs we like but it’s cheaper to go into town on the bus and meet up at the Angel or the Staff of Life. I suppose I like it because we just talk total rubbish. Could be about Arsenal or the Rovers, not that we can afford to go to either of them. I like it because it’s not having to talk about hospitals, or appointments or illness for a while. I was at the hospital recently with Emma and she was diagnosed with gall bladder stones so it’s like a domino effect sometimes. Well, you’ve just got to get on with it. (Read more)
Ann and son, Leon. Manchester
My name is Ann and I’ve been caring for my son, Leon, who has a dual diagnosis; paranoid schizophrenia and a heroin addiction for 30 years.
He has severe bouts of depression and gets very psychotic sometimes. Not all the time, but sometimes. When that happens he has to be admitted to the hospital for a few days until they stabilise him. It’s necessary, but he hates it.
Part of his schizophrenia is that he sees three figures: they don’t have faces, but they are dressed in religious habits and call him racist names. When this happens, Leon becomes distressed and aggressive. It’s difficult being a carer, especially when caring for someone with such a heavy addition.
Apart from all this, he’s an intelligent boy, he’s an avid reader and a great artist. (Read more)
Kim and son, Kai. Kent.
For six months after the suicide of my son, Kai, the last pair of shoes he wore stayed on the shoe rack in my hallway, untouched. Every time I passed them, I felt sadness, though now I realise the importance of what remains. All that is left are memories, and objects can help in aiding that memory.
Travelling with his shoes after he was gone started with an expedition to the Sahara Desert in North Africa. I decided to take them with me, capturing them in the desert landscape with a photograph. I take quite a few, then I choose the one I like best. I always wanted him to go travelling, and he never had that opportunity, so this is my way to take a part of him, part of his memory, to these amazing places; a way of fulfilling his chance to explore, to see different places and cultures. (Read more)
