Eddie Jones, head of clinical negligence at JMW Solicitors, explains some of the misconceptions his clients with cerebral palsy face.
Cerebral palsy is the description of a wide spectrum of disabilities, affecting each person with the condition differently. It is caused by brain damage, often in babies and very young children. The damage can occur in different ways – such as during the development of the foetus, before or after the birth of a child or in infancy. Cerebral palsy affects body movement and muscle coordination.
Those with cerebral palsy may have limited function of limbs, resulting in difficulties in movement, balance and coordination. Communication and learning difficulties may also be present. Not all people with cerebral palsy will have all of these difficulties and many will be able to lead independent lives. However, for those where the damage is more severe, a high level of care and assistance may be required.
In a survey about cerebral palsy, the results highlighted that one-in-four people did not know what cerebral palsy was, with more than half of participants (56%) describing their understanding of cerebral palsy as ‘poor’ or ‘very poor’. Helping people to understand cerebral palsy is an important step to helping both those living with the condition and those closest to them.
Common misconceptions about people with cerebral palsy
People with cerebral palsy are commonly thought to have a learning disability because of their physical disabilities. It is presumed that damage to the brain affects all of the brain’s functions. However, while some people with cerebral palsy have impaired cognitive function, it is not always the case that they will have a learning disability. Many people with cerebral palsy have excellent learning ability and, with the right support, can go on to achieve well academically. The main barrier they face is the accessibility of services for the physically disabled and the attitude of others. Specialist education, such as conductive education, can also help a broad spectrum of children with cerebral palsy to achieve their potential.
Chloe Tear, a blogger and head ambassador for CP Teens UK, said: “Because of the way cerebral palsy affects our movement, I am often accused of being drunk, when in fact I am completely sober! This is made even more complex when I am on a night out with friends.”
This lack of awareness does not only affect adults with cerebral palsy, but can make life a struggle for parents who have a child with the condition. We asked two parents with children who have cerebral palsy to share their experiences of how the public’s reaction affects them.
Parents can’t control their child
Meera: “There are a lot of misconceptions and prejudices out there. Arjun gets stared at and pointed at, a lot. In the past, he’s been called a ‘naughty boy’. People simply don’t understand it’s part of CP.”
People acting differently
Meera: “I don’t want people to feel sorry for me, I just would like people to not judge parents whose children have special needs.”
Paul: “Sometimes being treated differently can be a plus, for example, every now and then we can jump queues. But then it flips – we had a barber refusing to cut his hair once because he was uncomfortable doing it.”
Living with cerebral palsy
Meera and Paul also shared their experiences of navigating the world with each of their children, including the impact the condition can have on the whole family and how the smallest achievements can bring it with the greatest joy.
Meera: “One of the biggest difficulties is finding the space for quality time to spend with the rest of the family – my other children’s needs have to take a back seat. It’s really difficult seeing them upset and in pain, but not being able to do anything about it.
Paul: “The worst thing is seeing him in pain if he’s ill or his medication isn’t agreeing with him. Screaming solidly for weeks on end…it was really tough to watch. But we all try to deal with it ourselves.”
Meera: “The best thing is seeing him achieve what the doctors said he would never do. Seeing him smile, laugh, join in with the rest of the family and different activities. It makes all the difference.”
Paul: “The situation gives you more appreciation of the fact you can just do something when you want to do it. Any smile, giggle or look from Alfie gives a lot of joy. Any achievement he makes is a huge deal – we make the most of everything he can do.”
Cerebral palsy affects those who have it and their loved ones’ in many different ways, and a greater understanding of the condition will help erase ignorance linked to it. When asked what Chloe wished everyone knew about people with cerebral palsy, she said:
“We are just like everyone else – we have dreams and aspirations, and we want to be treated with equality and respect. By having cerebral palsy, it can make things more challenging and, at times, this can be overwhelming. However, we can find tremendous joy in life and love every aspect of it – it is certainly not all doom and gloom. Similarly, with the right adaptations, we can, and will, achieve. The general public should never underestimate someone with cerebral palsy!”
How to get help
To help those with cerebral palsy, compensation can be sought when an injury at birth or in the newborn period was caused by failures in care. Data from the suggested that there was a misconception about how much financial help was required to support someone with cerebral palsy throughout their life. Only 29% of respondents said they think £1 million or more is needed in compensation to adequately care for somebody with cerebral palsy.
As a law firm, we have helped many families affected by cerebral palsy to claim compensation that can run into the millions of pounds because of the lifelong and 24-hour specialist care that is required. This is not a lottery win, as the costs of caring for a child with complex needs are extremely high. Every penny is essential for assisting that individual and their families, and it is alarming to see that so few people understand how much is needed.
We know how cerebral palsy can impact lives, and call for a greater understanding of the condition to help address the lack of understanding linked to it.
For more articles about Cerebral Palsy, click here.