SAMANTHA Maxwell says of herself: “I’m an ordinary woman who happens to have a mild form or cerebral palsy.”
It was the attitude of others towards her cerebral palsy (CP) – at school and later at work – that led to her suffering a major breakdown.
But now in her early thirties, Samantha, from Wrexham, has fought back, helped by the words of her beloved grandmother: “Never give up.”
And after sister-in-law Ceri presented her with an opportunity to showcase her imagination, Samantha has published her first book, CP Isn’t Me, and she is already working on a follow-up. Here’s what she has to say . . .
“DISABILITY is an alien concept to many people. The general view in society is that people with a disability cannot do things that others can.
While researching CP Isn’t Me, this was the main feature of every article and every book that I read. Nothing was positive, only negative.
I knew this wasn’t true. I have a degree in graphic design, I work in the motorsport industry as a freelance graphic designer, and I own my own small part-time business designing and selling posters online. I’m a daughter, a sister, a sister-in-law, an auntie, a niece and a cousin.
I’ve been through the “normalities” of life – births, deaths, missed job opportunities, gaining qualifications and so on. Yet unfortunately, because I’m in a wheelchair, that’s all society sees.
I do believe that to some degree society has not moved on from the 19th century. Maybe not as brutal in terms of treatment (having the choice between an asylum, a workhouse or a freak show) but the same attitude towards disability persists.
The treatment I have faced up to this point in my life has been unbelievable, to put it mildly. In my younger years, it wasn’t as bad somehow. I guess it was a combination of love and support as well as the sense of normality I felt from my family and my friends.
My brother Ian always made sure I felt the same as everyone else. He was the person I felt closest to. We’d sit and watch films and TV shows together, dance around the house to music, and just act silly with each other.
My nan, to whom CP Isn’t Me is dedicated, was like a second mum to me. She would always come to the house to play games with me and her sense of humour had me in stitches. And my parents were absolutely amazing, treating me like any other child.
The happy years
Of course, there were times where I would have to go for hospital appointments and do things associated with disability, but my family never excluded me from anything, and I love them for that. I had a good group of friends in infant through to primary school.
At home, I had one good friend, Elika, who always included me in games with the other children in the neighbourhood.
My younger years were my happiest. I never felt the pressure to “fit in” because there was no pressure. Things changed when I started secondary school.
Secondary school was the beginning of the end for me in many ways. The end of the always happy child I once was. It started with bullying. I’d get doors slammed in my face, pointing and laughing, hateful things said to me, things that stayed with me really from the age of 12 until last year.
I wasn’t allowed out on the yard at lunchtime or break times, no disabled child was because we were seen as “vulnerable”. Instead, every single day, every disabled pupil was forced to sit in a room with a support worker looking after us.
They had a weekly rota for the support workers who were due to “sit” with us. This broke me, because I then knew that I was different. Segregation can do that. During my GCSEs, there was a battle between the school and my mum and sister-in-law Ceri, who fought hard to let me take my exams in a small room.
I have issues sitting in large, open spaces as I start going dizzy. Ceri, an English teacher herself, knew what I was entitled to, and fought along with my mum to get what I needed in order to achieve my potential and gain the qualifications needed to succeed in life.
It seems to me now, looking back, that the secondary school in question had absolutely no idea about disability. We had that label forced on us by the adults for everyone to see. In my opinion, if it wasn’t for the staff the disabled pupils lives would have been easier as there would not have been any hidden barriers.
I’ve heard since that that particular secondary school has improved over the years in regard to disability awareness, but my argument is that the level of mistreatment I and others faced there should never have occurred in the first place.
From there, it was just one thing after another that would contribute to the deterioration of my mental health.
My nan’s death hit me like a ton of bricks. I couldn’t function for a long time after. She was always there for me no matter what, and when she passed away, I was at a loss for what to do.
One thing she did say when I was in university, which I remember, was to never give up, which I personally took on board as my own mantra for life. After her death, I finished my degree with those words in my mind.
Anxiety and OCD
Similarly, when my dog, Bubbles, who was there for me during the majority of the darkest periods of my life, passed away, it was a surreal experience.
I know people will say he was just a pet, but to me he was so much more. Bubbles was the one I felt that I could confide in when times were tough, and when he died it was another blow.
Work life hasn’t been the easiest either, I’ve been fired from jobs in the past because of my disability which was hard to accept.
All of this had a detrimental effect on my mental health. I suffered with depression, anxiety and OCD for years, as a direct result of the mistreatment I had faced. Basically, I had a severe mental breakdown one day.
With the deterioration of my mental health, and seeing no way out, Ceri asked me to write for her class a review of a book, In which the protagonist had cerebral palsy, to see if I identified with them or not. Long story short, the response I received from Ceri’s workplace was incredible.
My dad and my English teacher always said that I had a good imagination, but I never had the confidence to try to write until the response to that review.
I have noticed people tend to pretend to be understanding and accepting of disability, but really nobody has a clue. Patronisation and discrimination still occurs. In the workplace, if you have a disability, you are automatically seen as weak or vulnerable.
Forget qualifications, or capabilities, if you have any form of disability, you are automatically judged and labelled. Put in a metaphorical box, segregated from the rest of society. People can deny it all they want, but it’s the truth. I’ve lived it, I know.
CP Isn’t Me is part autobiographical, part factual and doesn’t shy away from the harsh reality of disability in the 21st century. I really want people to read this book and hope the takeaway will be a change in attitude towards disability as a whole. I do think it’s gone too far the opposite way from the 19th century.
Today, disability is wrapped up in cotton wool and we are seen as incapable in every aspect of life. Our independence is automatically taken away from us. We don’t have a say in our own lives, everything is decided for us, by a society that has no actual idea about disability.
This needs to stop. Disabled people deserve better. We need better.
It’s time to rethink the idea of cerebral palsy. It’s time to rethink the idea of disability as a whole.
Cerebral palsy doesn’t define me. I define me.”
Follow me on social media! Facebook: CP Isn’t Me, Instagram: §@cpisntme, X (formerly Twitter): @cpisntme, YouTube: Samantha Maxwell Author, LinkedIn: Samantha (Jade) Maxwell.
