My daughter, Jennifer, is a wheelchair user and spends most of her time in bed She’s in too much pain if she stays in her chair too long. We try and get out as much as possible, but she can’t last long in her wheelchair.
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.
My faith is the thing that gets me through. Being a Christian helps me cope from day to day. I do go to church. Jennifer and I pray a lot together about all situations, all her concerns and worries. People think it’s just a crutch, but it’s not like that. If you enter into a personal relationship with somebody, anyone, it makes a difference. Whether it’s friends or people who support you. It’s the same with Jesus; a personal friend of yours, someone you’ve actually met with in prayer and worship. All the people sent into our lives to help: the physios, our friends who support us, it makes a difference.
Jennifer has hobbies. She loves photography, she takes photos of everyone. When she sees the doctor, the dentist or whoever, she takes photos of them and normally people are very good. ‘Oh’, they say, ‘I hate having my photo taken, but I’ll do it for you.’ That’s her main thing I’d say, but she also loves arts and crafts – it’s relaxing, isn’t it, things like that are good to occupy yourself.
Jennifer adds: ‘I like taking photos, of places I’ve been and things I’ve done. We do an alphabet challenge, taking photos of places starting in A – Z, then put them into a scrapbook. It was my brother Matt’s brilliant idea and it has encouraged me to start going out. I’m hoping to add S for Southend when Stepping Out goes there this summer. I like being out in the sun and I like trees a lot.
Paula: Jennifer and I do everything together, because she can’t do anything on her own. We try and get out as much as possible. We see a lot of people as Jennifer is a people’s person. She can’t stay out of bed for a long time and she can’t get into a lot of houses because of her wheelchair – its wide and long since she’s got one straight leg, so it’s hard to get into domestic houses, normally people come round to us.
But we do go out and join in with many things – Stepping Out being one of them. We also do Sport for Confidence; they have various groups there. Jennifer does archery, curling, multi-sports and swimming – something she has been able to do recently as they got a hoist. It’s taken a lot of years to get to this point, you know, it hasn’t just happened over night.
I think disabled access has improved a lot, because disabled people are getting out and about more. I think it’s making a difference and they are speaking up for themselves, saying ‘this isn’t right you know.’ Yeah, we’ve noticed it a lot. There is still a way to go with some companies and places, but other places are brilliant.