Cerebral palsy is a condition that can affect the health and wellbeing of those affected throughout the whole of their lives. For those who have never experienced the condition first-hand, it can be difficult to understand what this looks like on a day-to-day basis, or what people with cerebral palsy can really achieve with the right support.

In order to shed more light on this, we interviewed the award-winning disability blogger Chloe Tear, who has been writing about life with cerebral palsy for well over a decade. With her trademark honesty and openness, Chloe has provided some very valuable insights into the steps that can help people with cerebral palsy to live their best lives - and the support that others can provide to make this possible.

Check out the complete video interview with Chloe below, or read on for the full transcript!

“What does a typical day look like for you?”

I have mild cerebral palsy, which affects the left side of my body, and I'm also registered blind and have a guide dog called Dezzie. A typical day for me normally means I'm at work; I work four days a week, and this allows me to manage my symptoms and my energy levels.

I also work from home the vast majority of the time, which has been absolutely crucial for me being able to work four days a week. I tend to not work on a Wednesday, which allows me to have a break in the middle of the week and pace myself more effectively.

I moved out from [my parents’] home a few years ago, and for me, this was a massive learning curve in terms of… well, everything really! But in terms of a typical day, it meant I had to factor in doing things like housework, cooking and managing bills. That wasn't necessarily something I used to have to think about as much and spend energy on, so it's been about learning my own limits and asking for support when I need to, but also just being really mindful of the fact that I don't have as much energy as everybody else.

Working part-time means I'm still able to enjoy the things I want to and still go out on weekends with my partner, or with my friends. I think if I worked full-time, that just wouldn't be an option for me, really.

Another part of my typical routine involves caring for my guide dog, Dezzie. I try to get out and about as much as possible, and I think having Dezzie has very much increased my independence, and my ability to go out by myself.

I wear AFO splints when I leave the house and tend to use a walking stick as well, which very much helps with balance and coordination. The splints mean I can walk a lot further and feel more safe and secure than I would without them; I can see myself continuing to wear these because of the positive impact it's had on my mobility.

I also enjoy going to the theatre, going to yoga classes - and who doesn't also like a cosy night in from time to time?

“What are some essential forms of support that people with cerebral palsy need, but often lack access to?”

I think some of the essential forms of support that people with cerebral palsy don't often have access to are actually, I suppose, any kind of medical intervention.

Once you reach adulthood, it's very hard to get continuous support from the NHS for cerebral palsy, and I know from my own experience and those in the online community that you age with cerebral palsy a lot quicker. [Although] it's a static brain injury, there can be progression in terms of mobility and pain and fatigue, and I feel like those symptoms are not necessarily managed by the NHS. There’s a lack of understanding that cerebral palsy isn't just a childhood disability, it's a lifelong condition, and I believe we should get support right the way through our lifetime - and the interventions need to be different within those time frames as well.

“What should the government’s top priorities be to improve support for individuals with cerebral palsy?”

I think the top priority for the government should be investing in research and treatment for adults with cerebral palsy.

It's very much misunderstood that things can change when you're an adult with cerebral palsy. We have the wear and tear on our bodies due to how we've moved our entire lives, but also the general deconditioning that can happen with age tends to start a lot earlier for people with cerebral palsy. I feel like the only way we can actually support people through adulthood is to have that research, and therefore we need funding to do so.

Also, the intervention from the NHS shouldn't stop when you reach 18; it very much should be a long-term level of support that checks in whenever you need it. My experience from adult services has very much been [that] you see them for six weeks and then you get discharged again, and I feel like that doesn't necessarily look at the holistic picture of adults with cerebral palsy. It very much focuses on when there is a problem, and by that time it's often too late. Adults with cerebral palsy need intervention right from the beginning to stop or reduce this deterioration happening in the first place.

What Inspired You to Start Advocating for Disability Rights, and What Have Been Some of Your Most Rewarding Moments?

I've written a blog for over 10 years now, and I suppose the thing that got me into it to begin with was the lack of other people online like myself, and the lack of online community there was at the time. I felt like, as someone with mild cerebral palsy, there wasn't the representation that I felt I needed when I was younger, so I created it in the hope that I would connect with others in a similar situation, and I definitely think that's something I've gone on to achieve.

I’ve found lifelong friends with cerebral palsy as a result of my blog, but I think the most rewarding is actually when I get to go into schools and do talks, or I hear from parents who have a child with cerebral palsy [who feel] my blog offers a glimpse of their potential future. I know I have a more mild form of cerebral palsy, and because everybody is different, I cannot showcase what their future will be like. But, I know that when a child is given a diagnosis, often the statistics can be quite bleak.

In fact, I do live by myself, I have a partner, I have a job, and I think that's not necessarily something parents of children with cerebral palsy can imagine because of the language around diagnosis, and it's really hard to know what your child will go on to achieve. I'm really proud of my achievements, but I would consider myself quite a normal person, and I think that's also really important to showcase - that I'm not necessarily doing anything special or out of the ordinary, I'm just someone with cerebral palsy who happens to achieve things like everybody else. I think parents find that really reassuring, [the sense that] there is hope for their children.

I also really love going into schools because it's an opportunity to teach the younger generation about disability. I believe that it is only through education that we will become a more accepting and inclusive society, so the fact I get to play a really small part in that is really special to me, and I love the questions I get asked and the openness they can experience. That opportunity to ask a disabled person the questions they've wanted to, I think it can be a really strong learning point, and I hope that schools continue to have disability awareness as part of their education.

How Can Non-Disabled People Become Better Allies?

I believe people can become better allies for disabled people by listening to the stories that they have, and following disabled content creators and people online, because it's only by diversifying the media we take in that we diversify the views that we have. I know many people spend a lot of time on social media, and if you're being fed the same information over and over again, then that's going to be what you believe.

To be a disabled ally, it's important to support the people out there and listen to stories from disabled people. If you want to learn about disability, look at the sources from disabled people, acknowledge any bias that we may have, and give disabled people equal opportunities in life if you're in a position to be able to do that. Don't discriminate against us because of our condition or impairment, and empower us to achieve like everybody else.

What Advice Would You Give to Young Disabled People?

The advice I'd give to young disabled people is: be yourself and don't put too much pressure on yourself. I think those are two very clear messages that I needed when I was younger, and actually everything does fall into place. You do get there and you can still achieve.

For me, actually, one of the most empowering things and something that allowed me to progress in life was accepting my disability; accepting the fact that I am disabled, that it's part of who I am, and that I now need to work with my disability to achieve the things I want to in life, even if that means having certain adaptations to be independent.

I appreciate that's not an easy thing, and it's not something that everyone goes on to get in life, but I think when I was really struggling it was because I really hated the fact I was disabled, and I was fighting against myself rather than working with myself. It's only by being comfortable in who I am and having the right support in place that I've been able to go on and achieve what I want to in life. With the right support, disabled people can go on to achieve whatever they want to, and I think it's important to acknowledge that it might be harder for us and it might take longer, but actually you are worthy of achievements, and you are worthy of the support you need to get there.

As well as self-acceptance, it's about self-advocacy and being able to speak up about your needs. Again, that is not something that's easy to do, but it's something I've learned over time and I think for me, the most positive thing has been following other disabled people online and being a part of the online community. Being around like-minded people who understand the struggles in life and how you might be treated has actually been revolutionary in how I've gone on to accept my own condition, and I think it's just so important to have people around you who get it. Yes, you need support from family and friends, but for me having that support from other disabled people is something that I find really comforting - and really empowering as well.