How do you describe your Cerebral Palsy to others?

It can often be tricky to know how or when to disclose your disability. This could be describing it to friends at school or a potential employer when you are applying for a job. How on earth do you get it right and how do you say it in a way that people can understand? For Cerebral Palsy Awareness Month I’ve tried to write down how I would approach these situations and what top tips other people in the CP community would give.

How would I describe my Cerebral Palsy?

Something that instantly stood out is that people alter the way they describe their CP depending on the situation or person. I personally know I have a few set ways I choose to describe it, almost like a little script! When looking back on old speeches I have have written, the way I choose to summarise it seems to be very similar. For example:

“It wasn’t until the age of 7 that I was diagnosed with mild Cerebral Palsy, affecting my legs and left arm. Cerebral Palsy is a group of lifelong conditions that effect movement and co-ordination, caused by brain damage that occurs before, during or soon after birth; for me it has meant muscle weakness, my muscles being too tight and lack of coordination and balance, meaning I fall over a lot more than most.

Although my speech is unaffected, which can sometimes be the case with Cerebral Palsy, it has resulted in chronic pain and a visual impairment. Ever since being diagnosed at the age of 7 I have worn splints on my legs on and off which have helped me walk, as well as using a stick and wheelchair for the past 4 years. Although Cerebral Palsy is a fixed condition it is very common to deteriorate as a teenager and the affect it has on our muscles can change daily.”

Now that is quite medicalised and not necessarily what I would say in an everyday situation. Could you imagine saying that to everyone you meet?! I don’t think I would get the chance to talk about anything else! I know from experience, if your CP is mild then it can be harder if people just assume you are able-bodied.

This can change with age

When I was younger I almost took this as a blessing, that I could get away with not saying anything or talking about it. However, this also meant it was harder to get support in place or that I was judged for using something as simple as a disabled toilet.

“It is challenging. Mine is quite mild so people don’t notice unless I’m having a bad spell when I will limp a lot. When they ask what’s wrong I always say nothing, because it’s easier. If people notice and ask when they first meet me I just say I have a bad leg”.

LizzieBeth

I think when I was younger I often resorted to ‘blending in’ as it was the easier option when I didn’t fully understand what Cerebral Palsy was. I have always attended a mainstream school and have found this to be a positive experience, especially when I got older. However, I slowly learned that ‘blending in’ is pointless and, at times, can just make the situation worse. When I was younger I didn’t see myself as different, often meaning I would get frustrated if I couldn’t keep up with peers. This meant talking about my CP didn’t really happen, I didn’t feel confident in doing so and it was easier at the time not to.

However, as I got older, reaching the age of 15, the difference between my peers and I grew, I started to struggle more with pain and mobility, and generally found it hard to keep up with a ‘normal’ teenage lifestyle, whatever that is. This is what led to me starting a blog. This is what led me to talk about it more and gain confidence in doing so. I knew I wouldn’t be the only one who wasn’t confident about talking about their disability and I knew I wouldn’t be the only one who has the same challenges as myself.

The explanation depends on the situation

After talking to others it because clear that they too change their explanation depending on who they are talking to. I think this can allow us to get enough information across without it taking over the situation and also allowing us to have control over how much information we disclose. 

“If you’re a taxi driver asking “what’s wrong” I’ll tell you that I had an unfortunate run- in with a shark. However, if you’re anyone else, I’ll say I have a disability called cerebral palsy which affects mainly my lower limbs and my mobility and which I’ve had from birth. If I’m going more in depth I’ll say “my muscles are permanently tight and my feet turn in because my brain and body don’t really talk to each other”.

Vix

Why is the person asking?

I guess it also depends on the intention of the person asking me about my Cerebral Palsy. Humour is always a personal favourite of mine and sometimes people are just asking because they are nosy. Telling them about your CP would not enable you to gain support like it would if you were telling a member of staff or medical professional. I guess at this point it is up to you if you want to educate that person or just go about or daily business.

As a disability advocate I am more than happy to share my experiences, yet even I have days when I would quite like to not be asked why I use a walking stick. I have previously written about this when I explored the notion of ‘A disability advocate who wishes to hide her disability‘, we all have those days where we don’t want questions!

“Depending on who I speak to, how I refer to CP changes. If I’m on a date, or speaking with someone I’m romantically interested in, I either don’t ever mention it, or I massively play it down. My family, and friends I’ve known for a long time, receive a far more relaxed approached to my CP, and I’m known to crack jokes around it. Other times, such as job interviews or professional situations, I’m fairly clinical in my approach to discussing my CP- I state the facts and am quite direct about it’s affect on me. Ultimately, to myself, I change my perception of CP depending on how it’s affecting me that particular day, in turn this alters how I discuss it.“

Cat

When making new friends it can also be hard to know when to tell them about your CP. When I was less confident about it I used to wait a long time. Saying that, I have rarely had a bad experience about telling a new friend about my disability. I worried they might not want to be friends with me afterwards, but you’d be surprised. Normally just asking if there is anything they can do to support me. I always just used to say I have Cerebral Palsy which affects how my muscles work due to being born 8 weeks early. It may seem to simplify it significantly but it allows them to know a little bit, meaning I can just tell them other bits over time.

However, I do tend to say I am open to questions from the start. This might not be something everyone is comfortable with and that’s okay!

The inquisitive nature of children

On the other hand, children can ask some of the most interesting questions! I always have had a passion for educating the younger generation through talks in high schools, but younger children can learn about disability too. The thing is, the often have no filter.

They will tell it how it is and ask you questions with no hint embarrassment which is what I love! I’ve had my younger siblings ask my I wear ‘those things on my legs’, I’d explain that they are splints and help me to walk because my legs don’t work properly. I think the cutest response was when they just assumed they would have to wear them when they were older too! Yet here is how you could describe CP to a child:

“When children ask me about my hand, I used to try and dodge the question. But now, when they ask, I just say that ‘my hand is a little bit poorly and I have to wear a splint to make it better.’ They sometimes ask things like, ‘when did I get it?’ And ‘does it hurt?’ But I just answer with, ‘I got it when I was born and no it doesn’t hurt.’ I’m honest with them, without going into too much detail.“

Emma

Kids are like sponges and they love to learn. Being able to teach them about disability is always lovely. I once had a little boy ask if my wheelchair went really fast. This turned into a bit of a race to see who was the fastest. He kindly recommended I got jet engines (like a plane) if I wanted to be quicker than him. I thanked his mum for encouraging him to come up and ask his question, because I think this can be half of the battle. Describing our disability can become difficult because of the views society has round disability.

Encouraging openness from a young age can help to shape the next generation and ensure disabled child grow up to be confident in their abilities and feel okay talking about their disability. 

The power of analogies

Similarly, analogies can be used as a way to help other understand. I have found these particularly helpful for children or people who want understanding without medical terms. It can be hard for others to relate to something if they don’t experience it, the lost letter analogy is always a go to!

“I have used an analogy of a letter that never gets to where it’s going in the past, to try and explain the concept of broken neurological pathways“

Ben

At the end of the day, the way you describe your Cerebral Palsy is completely up to you. It is your disability, which means it is your disability to disclose or not. Everyone will have variations but I hope this will give you an insight into ways which you could use. It’s okay to not know how to approach these situations and it does come with practice. It is okay to talk about it one day and avoid questions the next.

How do you choose to describe your Cerebral Palsy? Let me know in the comments below or on Twitter @chloeltear.

~ Chloe x