Misconceptions of Cerebral Palsy: An Interview With Chloe Tear

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Misconceptions of Cerebral Palsy: An Interview With Chloe Tear

“We are just like everyone else - we have dreams and aspirations, and we want to be treated with equality and respect.” - Chloe Tear

Living with cerebral palsy can pose a lot of challenges for the affected person and their family. Part of this is because of the inherent difficulties of living with a permanent health condition that affects movement and muscle coordination. However, additional challenges are posed by the fact that so many people have a poor understanding of this condition.

In 2017, JMW Solicitors carried out a survey that revealed the following:

  • Almost a quarter (24%) of the British public do not know what cerebral palsy is
  • Around two-fifths (41%) admitted to having only a limited understanding of the condition
  • Only 22% knew that roughly one in every 400 children is born with cerebral palsy - the remaining 78% assumed that the condition was less common than this
  • 23% said they were not aware cerebral palsy can vary in severity

It was clear from our research that there are a lot of cerebral palsy myths that are holding back people's understanding of this condition, despite it being one of the most common conditions that cause childhood disabilities. As such, we got in touch with Chloe Tear, an award-winning disability blogger and freelance writer who has been documenting her lived experiences as a disabled woman for many years. We invited Chloe to help us fill in the gaps in the public’s knowledge and help clear up some of the most common cerebral palsy misconceptions she has encountered.

Read on to find out what Chloe had to say.

What is cerebral palsy?

Cerebral palsy is an umbrella term describing a group of chronic conditions affecting body movement and muscle coordination, caused by damage to the developing brain. Data from the National Institute for Health and Care Excellence indicates that cerebral palsy affects around two in every 1,000 live births each year.

Chloe explained: “Cerebral palsy is a large spectrum of a disability and it will affect everyone differently. It is caused by brain damage that occurs around the time that you are born.

"It is possible that cerebral palsy only affects one limb (like a hand or leg), or it could affect all four limbs. This damage results in difficulties in movement (shaking movement or poor muscle control), balance and coordination. Similarly, depending on the area of the brain that has been damaged, it can also affect speech, vision, breathing and swallowing."

The severity of cerebral palsy can vary significantly depending on the circumstances; in the case of severe cerebral palsy, it can result in lifelong physical impairments or learning difficulties. However, Chloe was keen to stress that for many children with cerebral palsy, the prognosis can be much more positive.

She said: "The vast majority of people with cerebral palsy have average intelligence and our lack of physical control does not mean that we are incapable of achieving everything that everyone else does. Having cerebral palsy does affect our daily lives, yet I would like to think that we can achieve the same as an able-bodied person - just in a different way.”

If you would like to find out more about the basics of cerebral palsy, including its causes and risk factors, take a look at the NHS website.

What are the most common misconceptions of cerebral palsy?

When asked about common myths about cerebral palsy that she has encountered, Chloe noted that many people assume that everyone with cerebral palsy has a severe intellectual disability. In fact, the official statistic from the NHS show that only half of children with cerebral palsy will develop learning difficulties and there are varying levels of symptoms that affect individuals in different ways.

Chloe explained: “Other people often think we have a lower IQ as a result of not being able to walk properly or because we are in a wheelchair. They mistake the brain damage for damage to all of our brain. It is possible for someone with cerebral palsy to also have their intelligence impaired, due to everyone being affected differently, but this is often not the case."

Chloe also observed that the impact of cerebral palsy on her body movements can cause other people to misinterpret her behaviour:

“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 you are on a night out with friends.”

What do you wish more people knew about cerebral palsy as a condition?

Chloe is keen to raise awareness of the fact that cerebral palsy manifests in different ways over the course of a person's lifetime, and that people living with the condition may see changes in the way it impacts them over time.

She said: “I would like the general public to know that although cerebral palsy is a condition that technically does not change, the effect it has on our bodies changes all of the time. This can explain why we may use a wheelchair on a part-time basis. When you have cerebral palsy it means you can use three to five times more energy than an able-bodied person - meaning we can tire very quickly!"

As a consequence of this, a person's ability to live independently with this condition will depend on them being able to adapt to new challenges.

Chloe explained: "People with cerebral palsy may achieve things in a different way than you would yourself, but that does not mean that their way of doing it is wrong; we just adapt to our situations.”

What do you wish the general population knew about people who have cerebral palsy?

Above all else, Chloe wanted to emphasise that many adults with cerebral palsy are able to live fulfilling lives, and many are able to find gainful employment and walk independently with the right support and access to mobility aids.

She said: “We are just like everyone else - we have dreams and aspirations, and we want to be treated with equality and respect. Having cerebral palsy 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 our life - 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!”

What would your advice be if someone is worried they may say or do the wrong thing around someone with cerebral palsy?

As with most misconceptions, the persistent myths about cerebral palsy can only be dispelled by improving education around the condition among the general public. Chloe is keen to be part of this process, and encouraged those who want to learn more about her condition to ask her - without worrying unduly about unintentionally causing offence.

She said: “Always ask. We will have lived with this disability for our whole life so probably will have been asked the same question that you are thinking of. I personally would not be offended by any question, as long as the individual’s question was out of genuine interest.

"Please do not assume that we require your help - we can be very independent people - but asking us is not a problem in the slightest!”

Find out more

JMW would like to thank Chloe for taking the time to speak to us and tackle some of the most common cerebral palsy myths.

Read Chloe’s award-winning blog about living with cerebral palsy here: chloetear.co.uk

You can learn more about the issues affecting people with cerebral palsy by exploring the resources in our Cerebral Palsy Hub. If you want to explore the possibility of making a claim for compensation if your cerebral palsy was caused by medical negligence, please visit our dedicated service page, or give us a call on 0345 872 6666.

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