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Living with Cerebral Palsy

Hamish Jolly is 19 years old and is currently at University. During his final year of high school, he wrote a speech about living with Cerebral Palsy. This is a transcript of his speech.

Look at me, I appear to you like your average, middle-class white person, and you are right, I am your average middle class white person. In no way do I live a life less ordinary. However what if I take a few steps, to left, a few to the front, a few to the right. You may notice there’s something a bit different about me in the way I walk. And it’s because of this minor difference, I live a life that’s less ordinary, yet it still seems ordinary.

I walk this way because I have Cerebral Palsy, known as CP for short. While I will admit that at times it can be tough, it is like anything that happens to you in life, regardless of whether you are able-bodied or not – 20% of what happens to you and 80% how you take it. This is what a motivational speaker once told me – while I think the actual numbers he used might have been different. The message remains the same, so I try to maintain a positive outlook most of the time, as should you in your life.

I’ll give an example: I remember one of my favourite lesser-known YouTubers, by the name of Tommy Edison (who I advise you to look up), talking about the perks of being blind. I was amazed how positive he was, despite a crippling disability, whilst still maintaining that degree of honesty. I concede that, while it’s likely I will not be able match his humorous and charismatic or even positive-outlook abilities, I will do my best to lead by his example. Instead of feeling sad because of my lack of ability to do anything physical such as playing most sports, physical work, walk normally or write normally, do anything overly fast or requiring balance i.e. ride a skateboard or bicycle – I try to focus on the positives.

So I will start off with some of perks. This isn’t true for everyone with CP, but in my experience, people have been kind to me (at least upfront anyway) and nobody wants to mess with me. It’s like you’re the toughest guy around! Which is ironic, since you have a disability that severely limits your physical strength.

You might have heard me say this many times, but I have a plausible theory on this: Say I was to get in a fight at school right? The person who fought me would lose either way, not because I’m super-strong and would waste them (as I much as I would like to think so) but because – think of it this way – beating up a kid with Cerebral Palsy doesn’t make you look tough. Metaphorically it would be like hitting a girl or old person. And on the off-chance that I was able actually beat the person, well, that would make them look even worse. I should make it clear though that is not an invitation for anyone to fight me.

I know it’s wrong, but I have sometimes used my disability to my advantage or exaggerated it to get out of things I don’t want to do. I usually do this for physical work. But I’ll give a few examples: No I can’t go to the gym, I’m disabled. Miss, I need the school Wi-Fi password, I’m disabled. No I can’t go up the escalator, I’m disabled (I have an irrational fear of escalators). Able-bodied people have to spend money on buying ludes, I don’t have to – I’m already in permanent CP mode. Also, no chance of getting caught.

I always feel really sorry for able-bodied people because, when they study for example, they have to look at their own hand-writing. I don’t know how they do it. I can’t stand looking at my own handwriting. I much prefer the nice curves of Calibri. Because I have all my work on my computer, I can quite easily do my homework on my bed if I want to, though this doesn’t really work if you have sheets of paper or a textbook you need to read at the same time.

From a medical perspective, CP also has its benefits. Cerebral palsy is non-life-threatening. With the exception of children born with a severe case, cerebral palsy is considered to be a non-life-threatening condition. Most children with cerebral palsy are expected to live well into adulthood. Cerebral palsy is non-progressive. The brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain. In other words, Cerebral Palsy does not worsen over time like multiple sclerosis, for example. Cerebral palsy is not contagious.

And importantly, Cerebral Palsy is manageable. The use of treatment, therapy, surgery, medications and assistive technology can help maximize independence, reduce barriers, increase inclusion and thus lead to an enhanced quality-of-life. In fact I’ve never taken any medication as a result of CP. I was given some physiotherapy exercises I was meant to do – though I never bothered doing them!

I suppose now that I’ve talked about the perks of Cerebral Palsy I should actually explain what it is. I get asked this question a lot and I admit it’s one I either tend to dodge, or answer incorrectly. Not because I’m uncomfortable about it, but because I don’t really fully understand what it is myself or know how to explain it, but I think gives the best, most simple definition, that I have seen:

“Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). CP is usually caused by brain damage that occurs before or during a child’s birth, or during the first 3 to 5 years of a child’s life”.

The three types of CP are:

  1. spastic cerebral palsy — causes stiffness and movement difficulties
  2. athetoid cerebral palsy — leads to involuntary and uncontrolled movements
  3. ataxic cerebral palsy — causes a disturbed sense of balance and depth perception.

A mixture of different types is also common. I have spastic-diplegia, which means stiff legs. My hands are also stiff which is why I can’t write properly or rule straight, even with a ruler.

Something you may be quietly thinking is does Cerebral Palsy mean you have learning disabilities? Do you have learning disabilities yourself? The short answer to that question is, no. For me personally, as I only have minor Cerebral Palsy my disability is purely physical, not mental or learning, as far as I am aware.

However, the brain damage that causes CP can also affect other brain functions – sort of like a flow on effect I guess – and this can lead to other medical issues. Hence, you may sometimes see people with more severe Cerebral Palsy do have learning disabilities.

It can be difficult to define what causes Cerebral Palsy but for me I was born three months early. As a result my lungs where under-developed and I had to be put on a ventilator to breath. The oxygen couldn’t get to my brain. This not only put me dangerously close to dying, but caused the brain damage that resulted in me having Cerebral Palsy.

Cerebral Palsy with all its challenges has helped shape me into who I am today. But only part of me, as Cerebral Palsy is only a small part of me. Although there are many times when it can feel like the opposite. Cerebral Palsy does not define me, it is not the be all and end all.

The same goes for anyone. You may have had to face a challenge at some point in your life, you may be facing one now, some drama, whatever it is. You might have something about yourself that you do not like. Whatever it is, it does not define you. Your actions, your words, the way you treat others are what defines you.

I am not ‘that kid that walks like he just had a stroke’.

I am not a spastic. Neither are you.

I am not too slow. Neither are you.

I am not weak. Neither are you

I am not abnormal. Same as you.

You are not inadequate. Do not think you are.

My life is normal, yet extraordinary.

And so is yours

I am Hamish Jolly

And you just listened to my speech.