Ellen is 17. In many ways, she’s a typical teenager. But her disability means that she often feels excluded from activities that her peers take for granted.
This is her story, as told by mum Ali.
Ellen has general mobility problems. Her disability doesn’t have a name. She was born with congenital dislocation of the hip, a rare deformity of the talus bone in both feet, and mild arthrogryposis, which gives her restricted movement in her limbs, especially her arms.
Ellen had surgery twice before the age of three, and spent many months in plaster. She needs help with moving around and uses a walker and a wheelchair, all provided by the NHS. Ellen also needs help with dressing, and wears special orthotic shoes and a brace on one leg. If she falls over she can’t get up, and she can’t climb stairs.
Yet her cheery personality has an impact wherever she goes. People can’t fail to be impressed by a girl who makes so much effort to do things that others take for granted. Ellen enjoys swimming for exercise. However, she needs an accessible pool with a hoist or gradual steps or ramp, a large disabled changing room so that we can help her get changed and dressed, and a disabled loo.
Finding accessible venues is always a challenge. Cafes, restaurants and even shops sometimes pay lip service to disabled customers’ needs. Having enough space between aisles and between tables and chairs can be problematic. Lack of disabled parking and abuse of parking spaces by lazy and inconsiderate drivers is a constant thorn in our side.
The range of activities we can all enjoy together is limited but we all like music and attending concerts and festivals. Again we have to make sure the venue has accessible seats and a disabled loo. Some venues provide a free carer place which is much appreciated. Most beaches in this country are ruled out. On the Continent, many resorts make an effort with wooden boardwalks and disabled portaloos, but that is very rare in the UK. Ellen, whose walker and wheelchair don’t work on sand, has rarely felt the sand beneath her toes.
The independence challenge
Most teenagers Ellen’s age would be independent, but Ellen still needs an adult with her. As she’s at the age where it’s embarrassing to have your parents with you, we use money from the government’s direct payments scheme to pay for a carer to escort her. We only get four hours a week. If Ellen had more hours with her carer she could be more independent. Disabled children are like everyone else. They have ambitions and dreams and the desire to work and contribute to the world as everyone else. And they should have the same opportunities as everyone else.
I think that Social Services should have the power to be child-centric – to ask what the child needs and direct resources to make it happen. For example, if a child needs help with weight management, let them have free access to and designated support from local authority leisure centres, swimming pools and relevant accessible exercises classes. If we lived in a more accessible society where inclusion was a priority, then Ellen could contribute more to her local community. She has an amazing, confident personality and if more carer hours were available then Ellen could be more independent.
This is the part of our life that most people simply do not see.