Carrie-Ann Lightley is an expert in accessible travel, and an ardent advocate of the importance of travel for disabled people. She tells us her story.
On her CP
My Cerebral Palsy means that I’m not able to walk. I use a wheelchair outside of the house. And inside of the house, I mobilise, sometimes using my knees sometimes using a frame, sometimes using a wheelchair.
I experience a lot of pain as part of my Cerebral Palsy, particularly related to muscle spasticity. And particularly now as I’m in my mid-thirties, I do have to be much more careful to not be physically doing too much at any one time, which may then cause an injury or more pain.
On growing up with CP
When I was a child, all of the people around me, and indeed myself, were told, ‘Cerebral Palsy is not progressive. We need to do all of the work that we can to keep Carrie-Ann out of a wheelchair because that will be the best thing to help her lead an independent life.’
I started using a wheelchair more towards full time in my mid-teens. My parents tell me that they could see how much happier and more independent I was with a wheelchair versus walking with a frame or using sticks and callipers. Wheelchairs mean freedom to me, wheelchairs mean independence to me, wheelchairs mean that I’m ultimately less disabled because I’m able to access my environment in a more meaningful way.
When I got to my early thirties, the way in which I had been using my body up to that point was no longer sustainable for me. There were injuries being caused, there was definite mental health impact. I did have to make some quite difficult decisions around this time to say, ‘right, okay, I need to learn how to slow down, to rest, to take time out, to give myself time to recover from injury’.
On building a medical team
From the age of 16 until I was probably about 31, 32 the only contact I had with the medical world was via my GP.
I didn’t have any other specialist support at all. And then, when I got to my early thirties and started struggling a bit more and started doing my own research, then I took it upon myself try and get some support from people like neuro physio, occupational therapy, to get some consults with a neurologist and then to see the musculoskeletal team.
I sit here a few years later having achieved all of that, having managed to pull together my own multidisciplinary team. But I don’t think I can emphasise enough how much work that has taken, how much tenacity, how much not listening when I was told, ‘no, no, you can’t be referred to this service, they can’t help you’. And how I’ve had to make myself fit into boxes that ultimately aren’t cerebral palsy. A lot of the services I’m seen through are neuro rehab services designed for people who’ve had strokes, acquired brain injury, etc.
The expertise of those professionals is still really valuable, but it has been a fight. It has been a battle. I’m grateful to myself for the fact that I’ve been able to do this. But it shouldn’t be that way, shouldn’t take that much. It shouldn’t be down to us as individuals to have to fight for the services that we need to support us.
On what healthcare for people with CP should look like
In my ideal world for healthcare, it would be a team similar to the team that I’ve amassed now, but in a more holistic and joined up way. At the moment none of them really talk to each other. They’re all accessed from very different areas of health care and services.
The ideal for me would be to have somebody overseeing my multidisciplinary team who has appointments with me a couple of times a year and takes ownership of that so that it’s not up to me to make sure I’ve got a physio appointment here or an OT appointment to review this there. My ideal is that the excellent NICE guidelines, that UP had a part in producing, become reality. What we know now is that the guidelines are excellent, but that the care pathways just still don’t exist.
On becoming a travel writer
I’ve always been passionate about travel. I started working in the charity sector back in 2005, and I was working for a charity that had a focus on accessible tourism. I was asked to do a press trip to a couple of cities in Scotland and to write about it for the charity’s newsletter.
What really struck me was the feedback that I received from readers. People telling me how powerful it was for them to be able to see someone who looked like them traveling and trying out these destinations in a way that made them feel like maybe they could do that too. And that was a catalyst for it really. So that my travel writing developed, I launched my own blog. It’s something that I maintain to this day although because I don’t work directly in the travel sector now it sometimes has to take a back seat.
I’m still very passionate about travelling and about sharing my experiences. I don’t profess to be an expert in everyone’s needs. I don’t say that my reviews or that my information constitutes a comprehensive guide to accessibility at these destinations but it’s about me sharing my experience and what I’ve been through and venues that have done a great job for my needs, and I will always share with that caveat.
On the importance of travel
Accessible travel is incredibly important. Travel for everybody brings a richness to life, and particularly for disabled people, it enables us to push the boundaries of our comfort zone. Accessible travel certainly isn’t always easy. There’s nearly always some kind of bump in the road along the way that you have to navigate, metaphorically or otherwise.
For me personally, it’s not always easy, but it is always worth it to have got there and be sitting in a new city in a rooftop bar with a gorgeous view. Being able to do a level access hike in a wheelchair and suddenly be able to see open countryside. Sitting on a beach and listening to the sound of the waves, all of these things feel, for me, so much more satisfying, so much more impactful, so much more empowering – almost because of the journey that I’ve had to go through to get there.
That’s what travel provides for everybody, a different perspective, a break from the day to day. I think that’s almost even more important for disabled people.
On inspiration
I think the word inspiration is so overused in disability circles and a lot of people have a lot of different feelings about how they feel about that. But for me, I do want to inspire people. I want to inspire people to travel. I want people to read my content and think, ‘yes, I could give that a go. I want to go there. That sounds brilliant.’ I don’t want to inspire people just because I exist. I don’t want to inspire people because I get out of bed in the morning, just like everybody else does, because inspiration requires action.
So when somebody comes to me and says, ‘Oh, you’re so inspirational.’ My question back to them is always, ‘okay, what have I inspired you to do?’ And I think that’s probably the ethos that underpins all of my work in travel.
On UP
I’m so grateful to UP for the work that they do and to be an ambassador for UP. I feel like we’re pushing against the grain with this, we’re pushing against lots of people’s preconceived ideas about cerebral palsy, about cerebral palsy in adulthood, and about what adults with cerebral palsy can achieve.
We have for such a long time been given the same messaging about adult cerebral palsy: it’s non-progressive; you need limited support. All those kinds of tropes. And we know now that that isn’t true. But we need to be able to get people to listen to that.