On a cold and clear afternoon in Newport, South Wales, I was chatting away to Maggie Sargent, Care Expert at an APIL conference. I noticed information about a trip to South Africa, a safari with CCMS and we were sharing stories and reminiscing on my time living and volunteering there.
‘Why don’t you come skiing with us’ she said, I was rather more hoping for a trip back to the Big 5, WITH TEMPERATURE OF THE BIF 3-0, but without hesitation I said ‘yes’. Fast forward to March 2019, and I (somewhat foolishly) text my friends from home to say that I’m off to France and rather than the usual radio silence that follows a fully litigated caseload, they should be prepared, for a lot of contact from me. To catch up, as I would have much more free time on my hands as I was ‘out of the office’. **
As I write this on the train back to Yorkshire, I am laughing at how naïve I was, and somewhat selfish. The reality was something wholly different, so much more than I could have ever imagined. I’m utterly exhausted, and quite rightly so: carers, parent carers and support workers are absolute selfless superheroes made from a different DNA: robust, loving, giving, wholesome, all knowing and brilliant.
Equally this week was about the superstars (insert same adjectives as above), those who through no fault of their own had an acquired brain injury (ABI) – not that anyone was going to let this get in the way. Not in their way and not in Maggie’s or Nicola from CCMS’s way. Everything I thought I knew about disability was turned on its head.
On many occasions I would just take myself off for a moment, overwhelmed at how utterly unfair it was that someone’s whole world could change in a heartbeat. It’s something I am still struggling with (don’t use your mobile phone and drive). It didn’t stop us having a brilliant time, but at moments I witnessed members of the group hearing a song that would take them back to a time before their ABI and getting upset. It was in that moment that I saw a tenderness from his carer, who knew him implicitly. To allow him to grieve but also to bring him back to a smiling face.
Equally there were times when people seemed to go overboard with being overtly accommodating and that also frustrated me. To make such a fuss which just makes something of nothing and draws attention. To shine a light on people. Yes, some people have an ABI but we are all the same. Just a bunch of people wanting to get down the mountain in a quick time (Hollie – oh my goodness that women has a need for speed), to feel the wind on our faces, in one piece and to finish the day with a lovely cheesy raclette. It was my aim to ensure that whoever I was with just had a normal ski holiday. That despite some perceived limitations Maggie and Nicola found ways and means around, each and every person on the trip would feel exactly the same as everyone else on the slopes, in après and in the evening.
It’s quite difficult to put into words the effectiveness of Maggie and Nicola. Superhuman is a good start. No challenge insurmountable. No member of the group ever left behind. No matter the challenge, nothing was a closed door. Their aim was to make it all seem effortless. Quadriplegic and want to go 50mph down the mountain on a red run? Check. Wheelchair-bound but fancy a skidoo across and down the slopes? Check. Affected mobility but want to go down a toboggan solo at 140mph? Yes, we did that too. We also had an 80’s night which I thought was just as exciting too!
The energy and the sheer perceived effortlessness of how they did it (I still think there’s an element of magic) filtered through the group. As we gelled together. We bonded over sharing hoists as much as we did over red runs and getting the best bit from the dessert table – Paula, you know I will be forever grateful.
This week I have lost at cards and Dobble more times than I care to write here (I truly put on a rubbish show). Victoria, I am determined to get better. I have heard stories about the worst airports in the world to try and have a ‘number-two’ in. Laura and Hollie you are so honest and funny about a subject that should be a basic facility.
I have learned how to manual handle and hoist. Thank you Sara and Asher for your patience and willingness to let me in and help as a newbie. I have showered using a hoist and assisted with a massage. I have tried and failed to keep up with a taxi-ski and a sit-ski down the mountain. Jamie never got tired of waiting for me. All for one and one for all.
This week has changed me, but above all else, it taught me that nothing I could read in a report, or hear in trial, nothing that a care diary could tell me really ever comes close to the reality of living with cerebral palsy or ABI, or as a carer, parent carer or support worker.
Here are my top 5 take home observations:
- Everyone deserves a holiday. Everyone. I booked and planned 1 party in the group and I had no idea how complicated just booking flights were for a start. How ineffective wet rooms are, a shower screen is such a waste of glass and it just got in the way. It takes more than just being able to drive your chair into a room and the world hasn’t caught up with that. We made do, but that in itself is a frustration.
- You need 2 carers – minimum, and I won’t here of anything different! After this week I am really struggling to comprehend how this is often contentious part of care evidence. It’s not just for hoisting, because I never saw less than 3 people assisting to hoist on this trip. Not once. I know it can be done. But it strikes me as frankly cruel that 1 adult could be expected to be moved by 1 person.
- Disability is not a burden. Do not underestimate the wants of someone because they have a disability. Life should be limitless. It’s not about therapies and education. It’s about living a life like everyone does, possibly in a lot more pain that you or I can imagine, but a holiday should be about freedom away from our day to day lives, doing what we wouldn’t every day. There should be no difference.
- Massage works! It took 3 of us to turn and position Asher. The release in Asher was palpable. It is frankly essential. His tight muscles were relaxed, he was happy and we all were. It was an honour to be part of something that we could see made his life better. Massage is essential and it works! I am forever grateful to Sara and Asher for letting me experience that with them.
- If you want to know what someone with an ABI or CP is thinking or feeling or wants, ask them. Not their carer, them. Don’t just assume that someone who is non-verbal cannot communicate for themselves. Communicate with the person. It took me a few days to learn everyone’s names, and for them to get to know me and for us to communicate. After that and despite my very basic level of Makaton, we communicated freely. Breakfast was by far my favourite time of day. Lots of catching up and excited anticipation for the day.
As profound as this trip was, that those with disabilities were able to ski and enjoy a brilliant holiday. It’s not their disabilities that remain with me.
I’ll miss pretending to be a radio 4 presenter in the morning and being beaten time and time again by Victoria, Mike and Dave at Dobble. I’ll miss my morning hugs and evening ones at that. I’ll miss Hollie’s evening outfits and hearing the crazy speeds she hit that day. I’ll miss the sound Asher made when the massage released muscles that had been tight for years, and his eyes following my hand playing an arcade game. I’ll miss Colin’s encyclopaedic knowledge and him quizzing me on Welsh opera stars or the cast of Heidi Hi, and running off at night to freshen up my knowledge for the following day! I’ll miss dancing in the headlights of Jamie’s chair.
I’ll not miss how tired I was day in, day out, but I will miss the group immensely, my family in La Plagne for a week. If I have learned anything this week, it is that we are all the same.
**my friends are still waiting for contact from me. I hope they can settle for a Toblerone.
Natalie Cosgrove, Associate Solicitor, Clinical Negligence Department, Switalskis Solicitors