Kayleigh Walters is one of Livability’s Service User Engagement Officers. Her role sees her visiting a range of Livability services around the UK. We interviewed Kayleigh and Annette Walters about how they approach life as a team.
Kayleigh: Living with cerebral palsy is “normal” for me – I don’t know any different, having had the condition since birth. Over the years I have learned to adapt and find my own way of doing things; although I have to rely on my family and friends for support in most areas, I still try to be as independent as I can. One thing a lot of people don’t realise is the impact that cerebral palsy has on my emotions: when I’m happy or sad everything is heightened. Mum is always there for me to talk to and support me.
I love my job as a Service User Engagement Officer, especially where I become another’s support network and get to listen to other people’s stories and achievements. My experience of my dad’s disability and my own experience as a former Livability service user – these have given me a greater understanding of the challenges people can face.
Annette: When Kayleigh was first diagnosed with cerebral palsy at 18 months, we were introduced to other families with disabled children. We already knew that Kayleigh’s condition meant that she couldn’t walk or stand independently, but the support of this community helped to build a picture of how the condition was likely to develop. Sharing information and ideas provided us with a coping mechanism to help us move forward.
Having a strong network of family and friends around me is still important – as it is to Kayleigh. Whenever I have triumphs or frustrations, it’s this network – my husband, wider family and friends – that I can always turn to for support.
Kayleigh: I lived with my mum and dad for 26 years but now live in my own home with my partner, Jon, who looks after our house, cooks all the meals and supports me when I am at home. When I have to travel for work and stay overnight in hotels mum helps me to get ready in the morning – she basically acts as another pair of hands! My job involves quite a bit of travel and I make all the arrangements myself. As my support worker, mum comes with me in the car or by train to ensure I get from A to B safely.
Annette: Kayleigh needs support throughout most of the day and night and so we work together to get things done. Simple things that many of us take for granted like tying shoe laces, doing up buttons and zips, and even opening jars and bottles are almost impossible for Kayleigh. One of the symptoms of cerebral palsy is acute muscle spasms, which can happen unexpectedly and often cause her great discomfort. Good teamwork is what gets us through the day. We are also both very determined and naturally positive people.
Kayleigh: I always do lots of research to get the whole picture before I travel. And I’ve learned lots from my own experience. For example, in everyday life I use an electrically powered wheelchair, but because this doesn’t always fit on public transport – or in any of the train toilets! – I use a smaller manual chair when travelling.
Annette: We have to plan our journeys together carefully a long way in advance – this is the key to getting where we want to go. We always arrive at train stations at least half an hour before the train leaves to give the assistance staff and ourselves plenty of time. In our experience we have found that staff at train stations and taxi drivers are very helpful and considerate and will try and accommodate us to the best of their ability.
Sometimes people are limited as to how much they can help us. This might be due to the location or a lack of knowledge on their part. Whatever the reason, it’s important to avoid directing any frustrations we have towards them.
Kayleigh: I love going to the theatre and have had really good experiences in both West End London theatres and at my local theatre in Plymouth. Box office and venue staff have been very accommodating and helpful with my access needs. I also enjoy exploring different countries and cultures, although travelling by plane is not always easy. On one plane journey, I was asked to sit on the end of an aisle. Even though we explained that I needed to sit between mum and dad so I could get up to use the toilet during the flight, the flight attendant was adamant and was extremely rude to us when we tried to explain. I know that airlines have their health and safety rules, but it would have been more of a safety issue if I had sat in the end seat as I wouldn’t have been able to move! Eventually I got the seat I wanted but it was quite stressful. It won’t stop us travelling by plane another time, though!
Annette: As a family, we really enjoy eating out and seeing live music. We also love visiting sites of historical interest like the Tower of London or Plymouth Barbican. Sites like these can’t be adapted, so we prepare ourselves for cobbled paths and roads that aren’t wheelchair friendly. We also love travelling and exploring new places – although travelling by plane can take some effort, as Kayleigh has to be carried to and from her seat while her wheelchair is stored away with the rest of her luggage.
Kayleigh: It’s all about your attitude. Being positive helps us to take on any challenges. It also affects those around us – if you have a good attitude, people really respond. And that’s half the battle!
Annette: I am a very positive person and this helps to motivate both Kayleigh and myself through the challenges that we face together. I get a lot of positive energy from helping Kayleigh and I love seeing her achieve at work and her enjoyment of it. Because of Kayleigh’s work commitments I have become more outgoing and much bolder about asking for help.
Kayleigh Waters is one of three Service User Engagement Officers employed by Livability in the Quality and Practice Development Team. Kayleigh has always had a passion to help others who have disabilities and to show them that, whatever your abilities, with determination you can achieve anything. Through her work with Livability, Kayleigh would like to play her part in helping to remove the barriers that disabled people face today and make the world accessible for all.
Right now, in our society, people are experiencing ‘barriers’ in their lives and communities. We want to tackle these things head on. Working together with local people, partnerships and services, we can create an enabling network and make community livable.