Cerebral palsy (CP) is not an illness, but an impairment or disability usually caused by brain injury before, during or after birth. Less commonly, it can also be caused by jaundice and infections such as meningitis. It is the most common disability in childhood. As I recount in my memoir, Trapped, I was left with CP because I was suffocated at birth.
CP is permanent, but neither progressive nor contagious. Physiotherapy in childhood - and exercise throughout life - can help to improve and maintain body strength and function (just as it does for us all). We should be wary of subjecting children with CP to endless therapeutic procedures, however, since they are then set apart from their friends and wonder why they are treated differently. There is a lot of talk about 'tailoring therapy to your child's needs' but above all, a child needs to feel included and socially accepted. As a teenager, I had to endure three painful operations. These invasive procedures, (stretching my left foot with bone grafts taken from my right hip, pinning my right ankle flat to the ground, and lengthening my hamstrings) have since been rather discredited in favour of a more holistic approach to self-improvement and healing, based on movement and exercise. In my case, the operations actually made my mobility worse.
CP has lots of fancy names to put people into different categories, but each individual with CP is just like anyone else with a brain injury, with his or her own abilities and challenges. CP varies widely between individuals, from mild impairment such as a shuffling gait or a weak hand, to severe disability requiring constant care.
Surprisingly, some people with CP are not diagnosed until they are in their fifties or sixties.
CP is not usually painful, though exercises which help us to stay supple and strong can be. When you go horse-riding, you may find your muscles ache; mine do too, but the agony while I am riding is sometimes acute. Because CP challenges the body in many ways, this can cause secondary problems, such as chronic arthritis.
People with CP who can walk often encounter social pressure from their families and friends to use wheelchairs. Perhaps they walk slowly, or maybe the way they walk is perceived as embarrassing, and is seen to put them at a disadvantage. It's no wonder that some people with CP are left with low self-esteem.
People with CP are often assumed to be drunk, irresponsible or hard of hearing. They may well be all these things, but not because they have CP. If I had a pound for every time someone has confused me with a worse-for-wear reveller, I'd be a millionaire.
People with CP have the right to a normal life, and given suitable support and understanding, there is no reason why we cannot have that expectation. That said, there is also no reason why we should be more careful than the average driver, more conscientious than the average parent, or cleverer than the average bod in the street. Yet, there are unspoken assumptions that if I am in a car accident, it is my fault; if my daughter ends up in A & E that I must have failed her in some way, and that I must be a secret genius - sorry, no - who goes out of her way to be a good, model citizen, no trouble to anyone. There is no reason why I should be extra well-behaved simply to counter that kind of unspoken, unintentional, prejudice.
Yes, people with CP can have normal sex lives. Mine is not normal, but then, I was a messed-up kid with very little confidence. To have a 'normal' sex life, first find yourself a partner who cares, who is willing to experiment and who does not take difficulties personally. That might be challenging, given how seriously the average eighteen-year-old takes life, but it's not insurmountable. Like most women, I had my fair share of 'Mr Wrongs', but am now happily married and have a beautiful daughter.
I always assumed that CP was the cause of my problems. This led to depression and for fifteen years I felt suicidal, trapped in a victim's mind-set of 'Why me?' The older I get, the more I realise that barriers which CP brings to the forefront are compounded when we are alone, discouraged or frustrated. Many social and practical obstacles are lessened with understanding and friendship, and by being encouraged to participate in social activities. I have made a good life for myself despite the naysayers, and others can too. Just because you have a disability, it doesn't mean you can't make something of yourself. Birth families that take great pride in physical perfection, who are high achievers or who take disappointments personally bring extra challenges; even so, other people's opinions need not define us. We can all rise above negativity and set out to be the best person we can be.
Trapped: My Life with Cerebral Palsy (Skyhorse Publishing), is out now, priced £13.99 and available as an e-book and an audio book narrated by the author. Visit www.franmacilvey.com