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!

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.”

Join Jill: Go Karting!

Join Jill as she tries out go-karting for the first time at The Experience!

Going fast is something I like doing and that was the main reason why I wanted to try go-karting. The Experience was developed by Kibble, one of Scotland’s oldest charities, whose goal is to help young people build a better and brighter future for themselves. It is the first go-karting place in Scotland that is equipped for disabled people, and they have all sorts of facilities for disabled people, such as hoists and specially adapted karts.

The staff were fantastic with me. They helped me with getting into the kart and made sure that I was comfortable enough before we set off. The girl who was driving the go-kart was lovely, and she noticed a few minutes in that I was uncomfortable and stopped to get me comfortable and then we were all ready to go really fast. My neck was moving about a lot so the girl also got a neck support to stop my neck from moving around. It was really nice of her, and it just shows you that they do care about the person in the go-kart and want to make sure that they are comfortable.

Overall, The Experience is really good for disabled people. They have hoist to get you in to the go-kart, and they have a sensory room too, which is great. They don’t have a Changing Places toilet as such, but if you need a hoist for the toilet they have mobile hoist which you can use.

I really enjoyed going go-karting because it was so fast and I loved when we went down the hill very fast, it was my favourite bit. Because I am in my wheelchair all the time it is good to be able to get out of my wheelchair and do something. I would like to try it again someday…

…if you are thinking of going and you have a problem sitting up I would say bring something like a cushion to support you in the go-kart and it can be rough so just watch if you get sore easily.

Having places like The Experience where disabled people can do an activity without any barriers is fantastic thing because it just shows you that everyone is capable of anything.

If you want to find more about The Experience visit their website or if you have any questions about trying disability karting for the first time, feel free to email me at jill.clark@bobath.scot  

1. I can’t walk

Due to having cerebral palsy I can’t walk or talk, but does that stop me? NO! I am in a wheelchair and I get about a lot.  Some people may see someone in my position and think “awwww, they must not be able to do anything”, but no – I am very active person. I go horse riding, swimming, skiing and a lot of more. But it’s important to remember not everyone who has cerebral palsy is in a wheelchair, some can walk or use a walker.

2. I have no speech

Having cerebral palsy means that I have no speech, therefore I use a communication device to talk. And does it make me quiet? No way! Some people might say I never shout up and I could agree with them.  I must say that having no speech is the most difficult thing about having cerebral palsy, but I have my communication device which that helps a lot.  I have done a few speeches and one of them was at the Scottish Parliament. And again, not everyone who has cerebral palsy uses a communication device to talk, some can talk or maybe find different ways to communicate, such as a symbols book.

3. Disabled access 

Access in places is one of the hardest things about having cerebral palsy. It won’t be the first time that I have wanted to go somewhere and couldn’t because there wasn’t the right access, such as all stairs and no ramps, or no suitable disabled toilets with a hoist.   Sometimes I’ve found myself needing the toilet when I am out but I couldn’t go because there wasn’t the right disabled toilet.  But I must say there are more places now which have the right disabled access.  There is an organization called Changing Places where they put in a disabled toilet with all equipment needed to make it fully accessible.

4. Meeting people

Due to having cerebral palsy I have met a lot of people throughout the years, such as support workers. It is a bit difficult to get to know new people all the time, but I must say most of time I get on with the people that I have met due to having cerebral palsy and they have become good friends to me.

5.  Raising awareness of disability

Raising awareness of disabled people is a big thing to me because I feel that everyone is the same, just in different ways.  Some people may just think that disabled people are just stupid and can’t do anything in their lives, but that is where making awareness comes in.  Raising awareness of disabled people is to help people to understand disabled people and to show what they can really do in life.

6.  Some people are scared or don’t know how to talk me

I find that some people is scared or don’t know how to talk to me because I talk through a communication device. They may ask someone a question about me when I am sitting there or they talk to me as a baby but hold it a minute – I am just a normal person so talk to me as you talk to other people please.

7. Awwww, it is a shame that you have cerebral palsy…

It is a shame that I have cerebral palsy is it? Eh I don’t think so, because cerebral palsy is not an illness so I am not dying. It is OK, I have problems in my life but everyone does and I don’t sit and think “I have cerebral palsy poor me” because it isn’t poor me.  I live my life to the best I can, I have a family and friends who accept me for who I am, and I live a very full life. I work, I go skiing, horse riding and much more, so it isn’t a shame just because I have cerebral palsy – I love my life and I am proud of where I am today.

8. See me not the cerebral palsy

I hope everyone sees me as me, not as someone who has cerebral palsy.  I know that my cerebral palsy is very noticeable because I have the wheelchair and talk through a Communication device.  But I hope everyone sees me just as a normal person

9. Education and employment

My cerebral palsy hasn’t stopped me from achieving things at both school and in the workplace – I went school and then college where I did very well.  And now I am a communications assistant at Bobath Scotland 2 days a week, and I am a volunteer at Quarriers one day a week.  Some people may think just because I have cerebral palsy I can’t get a good education or work, but I can do all these things.

10.  I am just the same but in a different way

Due to having cerebral palsy I know that I live my life differently from everyone else, but I do just same things as anyone else – I work, I talk, I do activities like horse riding and skiing.  I may do all these things differently from you but I can still do them. Some people sees me or another disabled person and think ‘well they are disabled and they are not the same as me’  and  fair enough nobody can  be the same as each other, but at end  of the day everyone is just the same but in  a different way.

I hope this blog shows that although I have cerebral palsy, and I do have problems because of it, it doesn’t stop me from finding ways to live my life as normal as everyone else!