Dr Lin Berwick: The Importance of CP Awareness Month

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As a woman with cerebral palsy commonly known as CP, I have battled my way through life for the last 75 years. It is thought that I am probably one of the oldest women with CP, yet I’ve managed to achieve great things way beyond anyone’s expectation. Life at 75 is a tremendous problem especially when there is a great deal of pain, discomfort and aggravation. Least of all from those in society who do not or even wish to understand the problems of dealing with multiple disabilities. Society still has a long way to go before people with CP are made to feel truly inclusive. When I go out to a restaurant, so often the tables are too low, and I am unable to get my wheelchair comfortably underneath the table. And so often the disabled toilets are often used as a dumping ground for buckets, brooms, and other cleaning materials. Often, we are left waiting while they remove the room’s contents. Which is not good especially if one is in a hurry.

I have a bespoke wheelchair, which has been specially designed to accommodate the issues with my back. I have a curvature on my spine, causing me to lean too far to the right and if I am not in my specialised chair, I am forever trying to correct my posture. So often people’s homes are not suitable for a chair that is more than 26” wide. Most doorways of normal houses are too small. My home has a doorway that is two feet nine inches wide to accommodate a wheelchair going through. Each house that I have purchased, has had to be substantially altered to accommodate my needs. And the issue of adaption to society goes on and mostly it is a very expensive affair.

Nothing comes easy or cheap. Adaptions to a home are very costly. Usually in their thousands. The wheelchair that I now use, cost £5,500 even though thankfully it is supplied by the local authority and thereby NHS. Everything one wants to do has to be approved and decided whether I am worthy of the support. Up til now things have worked out reasonably well. But when you must use a clos-o-mat toilet, even that becomes expensive. It uses quite a lot of water, and the annual maintenance is £200. So, as I say, nothing comes easy. So, when we can be accepted for who and what we are, even if it makes a bit of inconvenience to a restaurant, then it is worth it. Socialisation is not easy when you must be taken by someone. You can’t be a spontaneous individual. Everything has to be planned and wherever you go, it must be toilet, table, and wheelchair accessible, which for many are a public nightmare in public places. Obviously when steps are included in the equation, then what you can do is very limiting.

So, it is just a case of persevering and keeping going. I hope that CP month of March 2025 will give people out there an awareness of what is needed. Perhaps one of the greatest needs we have is friendship. So please don’t pass us by and hope that we will become invisible but make us part of your daily conscious in the same way you would any other able-bodied person or friend. We are not a breed apart. If a person’s speech with CP is difficult, then give them the time to say what they need to say rather than trying to complete the sentence for them because you are in a hurry and cannot be bothered. Disability takes time and patience and for you to have a genuine desire to listen to what people have to say. It isn’t rocket science.

We all need to be heard and appreciated for who we are. Despite everything, I’ve managed to cope with CP quadriplegia, being a permanent wheelchair user, being totally blind, and partially deaf. When I am talking to people and I have to explain my situation, I usually say, but despite all that, there’s nothing wrong with me. And of course, there isn’t anything wrong. It’s only how people perceive us. I can fortunately respond well because I do not have any difficulties with my speech. But for others it’s an exhausting experience constantly trying to make yourself understood.

All I would make a plea for is that you would see the person first and the disability as a secondary, for they are people first. Gone are the days thankfully, when we were referred to as a spastic. I absolutely hate that term for I am much more than the spasticity of my body. I think, feel, and respond the same as anyone else. It’s just that my reactions to doing things are not so easy, but I can still achieve much despite it all.

Dr Lin Berwick (MBE) is a writer, lecturer, broadcaster and freelance journalist. She has quadriplegic cerebral palsy. She is a member of Network CP.