10 Things You Should Know About My Life With Cerebral Palsy

10 things you need to know about my cerebral palsy

Kirsty gives us a list of all the things you should know about her life with cerebral palsy.

1. It doesn’t stop me from being myself

I like rock music and I want everyone to know it! I dress unconventionally, because I want to stand out from the crowd. People naturally assume because I sometimes use a wheelchair that I’d want to blend into the background, but far from it! I wear bright purple lipstick and AC/DC shirts because I want to be noticed. If they’re gonna stare then give ‘em a reason to!

2. My CP doesn’t give you a reason to patronise me

I’m seventeen so don’t treat me like I’m five! Just because you see me in a wheelchair doesn’t mean you can call me a “wee girl” – I may be baby-faced but this wheelchair ain’t no pushchair! (These pictures are from when I met the band 10CC, who were very nice. This is Mick Wilson trying to steal my hat!)

3. I don’t need your help

I’m pretty independent, so when people are pushing and pulling me every which way, it’s more annoying than helpful. If I need your help – I’ll ask for it. Just because you think I’m struggling doesn’t mean that I actually am. This picture is from when I went on my first proper holiday without my parents – Switzerland with my Girl Guides!

4. I’m not just a label!

I can remember going to an album signing by a band that I really liked (The View) and being referred to as a “wheelchair”, by the security guard who kindly instructed everyone to “let the wheelchair through”. I honestly felt like saying “Excuse me, I have a name”! I mean you wouldn’t refer to someone as just “green shirt” or “blue jeans”. You wouldn’t call someone by just the clothes they are wearing, so why refer to me as an inanimate object?

5. I don’t want surgery to “fix me”

I have been offered the option of surgery a few times, but I don’t want it! There are no guarantees that it will definitely work, and I would be in cast for months. When I told people that I was offered the option, but turned it down, they responded as if I had just turned down a million pounds! There is no real cure for cerebral palsy, only ways to make the effects of it less profound; like physio. So, I would rather not go through extensive surgery in order to “fix” something, which really, cannot be fixed. This picture is from one of my botox appointments a couple of years ago – where I used to get botox injected into my legs in order to make them looser.

6. I’m not self conscious about my CP

My cerebral palsy has affected me my whole life, so I’ve gotten used to it. It isn’t on my mind every second of every day – in fact, it’s rarely ever on my mind. I’ve gotten used to dealing with the obstacles I face every day, and even though I walk very differently to other people (dragging my foot, etc..) it’s not something that plays on my mind. As I have never experienced what it is like to live without my CP, I have no reason to be self-conscious, as this is who I am. This is another pic from Switzerland!

7. Growing up with a disability makes you appreciate more

I don’t take anything for granted, I walk as often as I can and never use my disability as an excuse not to do anything – unless I physically can’t do something. I hate seeing people taking their ability for granted. In April I walked around the full Brontë museum in Yorkshire, and walked up two flights of really steep steps because I am a huge fan of the Brontë sisters and didn’t want to let my CP stop me from experiencing something that I loved.

8. Not everyone with cerebral palsy is the same

Cerebral Palsy affects the brain; hence no two cases of it are exactly the same. The symptoms can range from speech problems to muscle stiffness, learning difficulties to weak limbs, and there are many different “types” of CP, so the severity of it can range from mild to severe. I’m lucky, as my Cerebral Palsy is very mild, and I now use crutches the majority of the time, however, I feel like there is a stereotype that all people who have CP have a learning difficultly, or can’t talk, or use a wheelchair 24/7. Whereas this is the case for a lot of people with Cerebral Palsy, it’s not with me. I feel like people tend to judge very quickly when they see me in my wheelchair, and assume that I am not as smart as I am, or feel like they have to talk down to me, which is incredibly annoying. Even my best friend didn’t know that there were other severities of my disability, and that the effects of my CP were mild, therefore I feel like there needs to be more information out there about my condition, and for people to be taught that not everyone with it is affected in exactly the same way.

Here’s my Dad and I enjoying the sun!

9. There is no cure

As I said before, the only options of reducing the effects of CP are either physio or surgery; there is no real cure. However, I don’t let that fact get me down. Sure, if I had the option to change a few things about myself, I would, wouldn’t we all? But, would my CP be one of them? Probably not. My Cerebral Palsy is part of who I am, without it I wouldn’t be the person I am today. I try to be as positive as I possibly can about everything, and try to live as “normal” a life as I can, as, after all, I am normal. This is a pic of my Mum and me when I was about 2.

10. Friends and family get you through it!

I have been so blessed to have an amazing family and awesome friends. It is thanks to these people that I can stay positive about myself and be happy! They never patronise me or treat me differently because of my condition, and it’s because of this that my mind isn’t constantly plagued with the fact I have Cerebral Palsy. In my eyes, I’m just a seventeen year old Rock Chick ready to take on the world no matter what life throws at me!

Meet Kirsty: Music

Kirsty tells us all about her love of music and how she’s overcome obstacles to pursue her passion!

I have always loved music. This is probably because my Dad was in a band in his early twenties, and still plays his guitar every day. I grew up in a musical household, which inspired me to become a musician. When I was about ten, my Dad bought me a guitar. However, I found it very difficult to play and gave up almost as soon as I started. In Primary six, a woodwind teacher came into our school asking if anyone wanted to be a musician. I was one of the first people to show up to auditions; in which Doctor Harris would put pupils through a gruelling test, which assessed our ability to recognise rhythm, pitch, and above all, how well we could breathe! We were allowed to try out the mouthpieces of the flute, clarinet and saxophone, and then we were told what instrument was best suited to us. I desperately wanted to play the sax, as my Grandfather played for most of his life, and was part of a successful jazz band. Doctor Harris was very perceptive; she took my Cerebral Palsy into consideration and worked out which instrument would be easiest, and best, for me to play. Thinking back, she could’ve easily dismissed me because of my disability – as the music industry is a scrupulous place, full of perfectionists. However, her kindness and understanding on that day meant that I had the opportunity to be seen as something other than just someone with a disability.

We realised quickly that holding the saxophone would be difficult for me, as it is very heavy (about the same weight as a bowling ball). The saxophone is meant to be held to the side, having only the sling (a strap around the neck which is hooked onto the sax) for support. We solved this issue by placing two pillows between my legs in order to hold the weight of my saxophone, after that, everything went swimmingly.

High School was the first opportunity I had to be part of an actual music class. In first and second year, we were given the chance to try out guitar, glockenspiel, keyboard and drums. I had a go at all of these, keenly, as I saw no reason why I couldn’t. The teachers, again, were so considerate, and were always eager to help me gain these experiences – so I never felt like I was missing out on anything. It was at this time, also, that my tech teacher offered to make me a wooden stand for my saxophone, instead of the unaesthetically pleasing pillows. This was a great help and made it easier to play the instrument that I loved.

Going into third year, we were to pick two instruments to focus on leading up to our National 5 exams in fourth year. I knew I wanted to continue sax, and I chose to learn keyboard (which was a popular instrument amongst my classmates). Not being one to follow the crowd, I asked my mum if I could start piano lessons. She agreed and told me that our neighbour, Lauren, was a piano teacher, so I began my lessons with her at the end of third year.

Lauren was also an incredibly kind person. She knew that my hands were quite tight due to my CP and that my fingers tended to lock sometimes, so she searched for pieces that not only would I love playing, but that were the easiest for me to learn to play (she always likes to challenge me and doesn’t treat me any differently to her other pupils!). Even though my actual music teacher felt there was no way I would pass my exam in the time I had (eight months) I passed with an A! My teacher was shocked as she told me that it normally takes at least two years for someone to just pass Grade 4 piano, never mind with an A!

Last August I joined the South Lanarkshire Orchestral Society intermediate band. In order to get in, you have to audition, but it turned out that the conductor of the band was actually the woman who had examined me for my Grade 4 – so no audition needed! Since I have been there I have performed two concerts with the band, both at the Hamilton Townhouse. My fellow bandmates are so helpful and always make sure that I have everything I need before we play. Playing in a band makes me forget that I am any different to anyone else as I am focusing on my ability as a musician, and performer, and nothing else.

I am so grateful for all of the teachers and fellow musicians who believed in me in order to get me to where I am now. I love being able to play my saxophone, and, through being a musician, I have learned what it is like to be treated equally to abled people, not patronised or looked down upon. I have worked and been taught by people who see me for my ability rather than my disability and that are not afraid to tell it like it is! I am proud to say that I am both disabled and a musician, and that those two things can coincide if you put your mind to it. It really is true that you can be anything you want to be!

Sandra’s Suggestions – Books about Disability

Our OT Sandra gives us her suggestions for children’s books about disability. We’d also love to hear from you if you have any recommendations of books that you or your children have enjoyed – send us an email at info@bobathscotland.org.uk to let us know!

Taking Cerebral Palsy to School

This is a book about a boy called Chad who has Cerebral Palsy. The book is written from Chad’s perspective. It’s written really well, with Chad explaining what CP is and what that means for him for things like dressing, transport, school etc. An easy read. Beautiful graphics. Very positive. From a therapy perspective the author has muddled up therapy roles e.g. mentioning Physio where it should be Occupational Therapy or Speech Therapy (possibly due to cultural differences).

Don’t Call Me Names: Learning to Understand Kids with Disabilities

This book explores different disabilities – some which are names (Muscular Dystrophy, Autism) and others which are described but not labelled. This book carefully addresses a number of difficulties that children can have and how to respond to these, encouraging compassion and inclusion. At the end of the book there are questions and points for encouraging discussion. Written in rhyme. Lovely graphics.

My Friend Suhana

This book has been written by a mum and daughter about two little girls who become friends, one of whom has cerebral palsy. It is written from the perspective of the girl who does not have CP and how she sees her friend despite her not being able to walk or talk or play easily. Beautifully written book about friendship. Lovely graphic on one page, with the writing on the opposite.

Hands up for Andie

This is the story of an 8-year old girl who loves to do what all her friends do. Andie has Hemiplegic Cerebral Palsy and hates to be treated differently. This book explores the issue of bullying. Beautiful graphics interspersed between lots of print.

It’s Okay to be Different

A very simple book filled with numerous examples of things ‘it’s okay to be’ – ranging from the ordinary to the extreme (eating macaroni and cheese in the bathtub!!). Very brightly coloured, simple graphics with short simple statements.

My Sister is Special

Written from a sibling’s perspective, this book tells the story of a little girl with Down Syndrome. It very simply explains what the condition is and how it is caused, before giving examples of how it affects daily life. Another beautifully written and presented book.

I Love You Natty

I Love You Natty was written by a mum of a child with Down Syndrome, who wanted to explain the condition and its implications. The book is written from the older sister’s perspective, charting Natty’s progress from birth onwards and giving her views on all the positive things about her sister. Filled with fun photos from their family album – a very personal and endearing book.

Employment as a disabled person – Claudia’s Story

Following Jill’s blog on her experience of trying to gain employment when you’re disabled, Claudia shares with us her story and recounts some of the obstacles she’s faced in pursuing her career.

When it came to work experience during my fourth year at school, I wanted to do something with sports. I was a gymnast with City of Glasgow Gymnastics Disability team at the time, and I wanted to become a gymnastics coach. To gain experience of working in a sports centre, I choose to do my work experience in Scotstoun Leisure Centre. However, when I arrived I was told to clean the toilets, and at the time I was suffering from a really sore hip because of my Cerebral Palsy. This made my hip worse and I only lasted half a day.

Once my exam results came through before starting fifth year, I found out I’d done really well in my standard grade administration and decided to do intermediate 2. After achieving a great result, I decided to do administration as a career. I didn’t want to leave school with no work experience so during sixth year I did a programme called Bridges to Work. Bridges to Work got me work experience in an office called Drivers Jonas.

After leaving school I knew college wasn’t for me and I wanted to go out and work. I applied for a modern apprenticeship, but I wasn’t ready so I went on a ‘Get Ready for Work’ programme. I was working in St. Mungo’s Academy providing administration support to different departments.

After gaining more work experience I was ready for a modern apprenticeship, however I came across other barriers such as working a 35 hour week and answering phones was hard due to my speech difficulty. I could only work a 25 hour week as I found it very tiring. I was lucky enough to find a company called Glasgow East Regeneration Agency (now called Job & Business Glasgow). I started my two year apprenticeship and gained a SVQ Level 2 & 3 in Business and Administration. After a year and a half into my apprenticeship I was finding the 25 hour week tiring and it started to affect my health. I had to cut down to a 16 hour week which I still do now.

Once my modern apprenticeship finished and after a year of being unsuccessful at finding another placement, I found an organisation called Shaw Trust which supports disabled people into work. Shaw Trust managed to get me a placement back at Job & Business Glasgow, but in a different office. I had a six month contract which was followed up by a three month extension. Once the extension had finished I went back to Shaw Trust who got me a further six months at Job & Business Glasgow.

In December 2014, when the six months in Job & Business Glasgow ended I wasn’t sure where I wanted to go next so I took some time out. In August 2015, I decided I better start looking for my next step. I wanted to do some volunteering so I contacted Volunteer Glasgow and they put me in touch with Project Scotland. Then I heard that Glasgow Centre for Inclusive Living who supports disabled people in to employment had an administration post within their company. I applied and I was successful. At the same time Project Scotland contacted me and told me that they had a volunteer place at Bobath Scotland. I couldn’t believe my luck when the two came up at once after being unemployed for a year!

In January 2016, I started with Glasgow Centre for Inclusive Living within their Equality Academy team. This was a year long contract. I worked there providing administration support and gaining some new skills. I also took up the volunteer place at Bobath Scotland and attended on a Friday. Recently I was meant to finish in Glasgow Centre for Inclusive Living Equality Academy, but I was offered a new 6 months contract.

I hope one day I’ll get a permanent job instead of short term placements but in a way I feel lucky as some people with Cerebral Palsy have never been successful. My story looks successful but trust me I’ve faced a lot of disappointments, barriers and frustration to make my story successful.

I hope that my story encourages other people with Cerebral Palsy to look for employment and not give up at the first hurdle.

If you want to find out more about getting into work, have a look at these websites:

Modern Apprenticeships

Shaw Trust

Job & Business Glasgow

Glasgow Centre for Inclusive Living

Glasgow Centre for Inclusive Living Equality Academy

Volunteer Glasgow

Project Scotland

Meet our new blogger, Kirsty!

Kirsty has started volunteering with us at Bobath Scotland, and we’re delighted that she’s going to be writing some pieces for our website! Stay tuned for more blogs in the coming weeks!

“When I was two years old I was diagnosed with Cerebral Palsy. All my life I have been so lucky to be surrounded by helpful and understanding people; namely Bobath Scotland. My CP is mild; I use crutches to walk as it affects my balance and the way my legs move, but everything else about my condition is practically undetectable to people who don’t know me. I realise how lucky I have been not to be as affected as other people with the same condition as me, but not being able to walk independently has its downfalls (If you’ll pardon the pun!).

I am a keen musician. I’ve played the saxophone for six years, and the piano for three. I passed my Grade 4 exam (with an A) on both instruments, but there were a few obstacles to overcome in order to get to that stage.

I turned seventeen in March. Whereas most people start driving lessons at this age, as I am getting a mobility car, I started learning to drive when I had turned sixteen. I use hand controls, as my legs are pretty weak, but that hasn’t stopped me from going 50mph!

I have now started volunteering at Bobath in order to gain some work experience. I would love to become a journalist, so writing for a charity which has helped me so much over the years, is not only ideal, but an opportunity to give something back to those who, without, I would not be who I am today.”