For this blog series, we invited people who draw on care and support – who are also members of National Co-production Advisory Group – to reflect on the Making It Real statements.
In today’s blog, Caroline Waugh talks about the statement ‘I feel safe and am supported to understand and manage my risk.’
Why is this statement important to you?
When I first received support, my daughter Daisy was 6 and my son Finn was 2. I felt there was a serious threat of being denied custody of my children as people thought my disability meant that I could not provide a safe and supportive environment for them. This was crucial to my wellbeing – being a Mum was a big part of my identity, and being recognised as capable of managing risks and coping with normal life was key.
An example of this was when I wanted to cycle to school with my children because walking was difficult for me, and my mobility scooter was proving to be too expensive to run with other more important costs to think of. To ensure the safety of myself and my children, I worked with Cycling UK to find an adapted cycle that was suitable for me. We worked on building up my stamina, learning road safety and creating a large circle of supportive friends so that I could do this with minimum risk – and maximum fun! – for myself and my children. This also gave my life some much needed meaning and interest outside of the drudgery of choosing washing up liquid and getting the grass stains out of white socks.
Even though both my children are now successful adults with lives and jobs of their own, l still feel that it is important for me to be able to manage my own risks.
Can you think of a time that you’ve felt this statement was really true for you in your life?
I enjoy living alone in my own home, but it can bring its own risks. My dog, Ronnie, is a rescue dog. He is a wonderful therapy dog but is as yet untrained in picking up his own toys. Recently, whilst visiting the bathroom I slipped on one of said toys – which, to add insult to injury, was actually a dehydrated bull’s penis! I sprained my ankle and toes, landing with a very heavy thud on the laminate floor. I was in the house on my own and could not get up. I was screaming in agony, and Ronnie was going bonkers. I reached for my phone but then remembered it was on charge in the lounge and I couldn’t get to it.
Thankfully I have a device called a Buddi alarm, something I’d found myself in order to manage risks like this. The Buddi alarm had taken control and notified my emergency contacts that I had fallen. I could hear my phone ringing in the other room as they all tried to check if I was ok. Obviously, I didn’t answer, so my daughter Daisy ‘directed traffic’ from her home in Birmingham, telling my son Finn that I had fallen and needed assistance. Finn at the time was out having dinner with friends and immediately set off with a friend on a rescue mission to help. Meanwhile, another contact had already come to my house, covered me with a blanket and kept me and Ronnie calm until Finn and his friend arrived. I knew that I had a work commitment in Manchester the following day and had trains and Personal Assistants (PAs) to organise, so needed to forewarn them of the situation regarding any possible disruptions to plans. As I knew this would all require me to be fully rested and as fit as possible the next day, Finn and my neighbour made a bed downstairs. Having systems like the Buddi alarm in place is an effective way to stay safe and manage the risks of living alone.
What might you like to change in your life that could help this statement work even better?
Buying my Buddi alarm was one of the best decisions I’ve made, but it was not easy. I had to do a lot of research and cost-matching to provide evidence to the local authority that using my direct payments to buy it would save the council money in the long term. It would have been good if I could have been trusted to make this decision myself. Because of my history, I have always been frugal with my direct payments – I don’t waste them and I try to make sure I buy wisely.
What kinds of things do you think people who work in care and support should have in mind when thinking about this statement?
I feel that people who work in care and support should bear in mind that without evidence to the contrary, everyone with a disability should have the autonomy to make their own decisions and be trusted to spend the money that is provided to them in a way they see fit.
A holistic view of people’s lives is important too. Whereas my PAs may have knowledge of the day-to-day situation, I also have a support network of family and friends who want to help and be in charge in an emergency. Seeing my life in a holistic way means that my PAs understand that I have unpaid support as well as theirs. These informal support networks enable me to take more risks and feel more in control.
Learn more by exploring the other Making It Real statements or downloading the Making It Real Guide.
