I used to love researching and booking holidays. Once, I found a hotel in Ibiza, half-board for two weeks for £150. I called the company and the woman I spoke to said a zero had obviously been missed off and to book it right now, so I did! It was a great hotel with a balcony and sea view.
I’ve booked holidays to Ibiza, Formentera, Germany, France, Lanzarote, Egypt, Greece, Wales, Cornwall, Croatia, the Azores, Kenya and of course Japan.
And then, along came serious disability and holidays have become very complicated and very expensive.
I don’t expect a dream trip to the Caribbean to come cheap. However, add in:
- A one-to-one care package, which gives me some freedom to do what I want when I want and have my personal care needs met.
- Equipment hire (hoist, profiling bed, and shower chair).
- My flights plus extra legroom because my legs spasm and do not bend easily.
- Extra legroom for the carer I have to have sat next to me.
- Single supplement (solo travellers of the world, unite and shout ‘outrageous!’).
The advertised price, including discounts almost triples. It took a lot of serious consideration on my part and a huge deep breath to book it.
The booking process itself is necessarily quite complicated, as the company and I have to be certain that I have thought of every single one of my care needs and that they will be met on the holiday.
The packing process is similarly convoluted, but eventually I was off to Heathrow.
After my trip to Sicily I decided to be more demanding of my one-to-one care package. I had requested that I was checked in and went through security on my own with a carer, so I had time for a coffee and pastry. It didn’t happen last time.
And here’s where it starts. I wrote my previous post in the first person singular, imagining I was there on my own. It was healthy for me to do that and remember that I am still my own person.
But of course I wasn’t alone. It was another organised, group, disabled holiday. There were two carers and four other travellers. Two of the other travellers were disabled, one had a family member with them and the other friend.
I was checked in quickly and easily with the carer assigned to me and was ready to go through security. However, another of the travellers was having huge problems getting checked in and the carer with them hadn’t done an international trip before, so I sat the wrong side of security, and waited, and waited…
And that’s the repetitive story with group travel. I spent a good deal of my holiday waiting. Waiting to get up while the others received their personal care, waiting for others to finish eating, waiting for others to get ready, waiting for others to be put to bed before I was.
The others had to spend time waiting for me too. I was always conscious that while my needs were being met somebody else’s weren’t. I spent one morning in bed instead of having breakfast and an evening on the bed instead of having dinner because there wasn’t time to meet everyone’s needs.
It’s stressful enough having new people doing my personal care without it also feeling rushed. No lie ins on this holiday. Up at 7:30.
Eventually, to the holiday company’s credit they called in a local carer to help with the morning routine. After the holiday, the company responded well to the issues. They listened, I was heard, I had a zoom call with the CEO who really cares and received a full apology which I gratefully accepted.
The dinner in the Japanese restaurant on the first evening had that amazing view of the beach, palm, trees, sea and sunset. But I was sat at a table with six other people I hadn’t chosen to be with.
The carers were 30 years younger than me and three of the travellers 20 years older than me. They came from a different world to my liberal, left-wing, rebellious, adventurous, single, childless, Brighton self.
They were good hearted people, but I couldn’t have a good conversation with them. I shut down most of the questions about me and my life. I once heard say ‘people have to earn my story’.
I do recognise that it’s quite contradictory to spill anything and everything for the public arena here, but that is not what I wanted from my holiday. I just wanted to be left alone, and after a few days the others did get used to me not being very sociable.
All the excursions (even that word makes me cringe) and meals were shared with the others on the trip, along with their innocuous chitchat about family, children and small town life, my least favourite conversation about being disabled, and the worst – religion (Christianity, very very good, Islam, bad).
I was never really alone. Sunbathing in my spot on the beach was the closest I got. One benefit of travelling with others was that while I wanted to relax, it gave the carers the opportunity to deal with the needs of the other travellers, but they were always on the periphery.
I was able to use the one-to-one part of my care package three times. There was no way I was going to visit the aquarium which had dolphins and was right next to the sea. I was able to go off without the group in Willemstad. One evening I just enjoyed sitting on my balcony rather than going for dinner – I had to have a night off from the group. Solitude over food!
One of the most complicated parts of the trip was getting me in the sea. The carers knew how important it was to me and were determined to make it happen for which I am incredibly grateful.
There is no quick and easy way to get me from in my wheelchair to in the sea.
I was hoisted into the beach chair at the hotel. It was too big to fit in my room, so the manoeuvering happened outside my room and all of this with me in my swimwear. Thankfully, no one else was around. Thankfully, also the beach chair fitted in the lift so this didn’t have to be done in the hotel lobby.
The seat is very low down and there is a section for your feet to sit in. As I mentioned before, my legs do not like to be bent. There was a lot of innovation with towels, seatbelts, sling straps, bending, pushing and pulling, but I was in the chair. Next stage, get me to the beach…
A beach wheelchair has large, inflated wheels, which are good across sand and in the water, but not so good on roads and pavement. The beach we were going to was a good 15 minute walk away and part of it was through a shopping area.
Two people pushed/pulled/dragged the chair across roads, along pavements, up and down slopes, and eventually, through the tables chairs, and sun loungers to the sea. In these situations, I just have to switch my mind off from the reality of how I look to others.
While all of this was happening, the others had waited (im)patiently as they wanted to get in the sea as much as me. But finally, it was time.
I was pushed into the water, and we quickly discovered that the chair was extremely buoyant and needed two people to keep it stable. I was floating rather than submerged, but still, I was in the sea, in the Caribbean with a white sandy beach and palm trees around me.
It was a complex version of my dream come true. Sadness and gratitude. Yes, I was in the sea, but I have to be honest – what I really wanted was to be alone, swimming and floating and feeling complete freedom.
It can be hard to accept my reality, but the fact that I was in the water and not just on the beach or not even on the beach was amazing, with the caveat of ‘considering my circumstances’.
I asked to be moved around, so I could look out to sea and then see the beach and palm trees. There was a lot of excitement, chatter and photo taking. I asked the two people to stand behind me and just let me float so I could imagine I was on my own.
At one point, one of the people leant over my shoulder, and said “You probably don’t want to hear this, but I have been praying for you.” Moment destroyed. I forced my mind back into this is amazing, this is amazing, this is amazing.
I was then moved to just sit at the sea’s edge and enjoy the sea and sunshine. It was lovely, but there was no getting away from the fact that I was extremely uncomfortable. My legs were spasming and my backside really hurt.
We then did the full process in reverse, via a disastrous shower experience, which ended with me in bed, unshowered, missing dinner and physically, mentally and emotionally exhausted.
I’m happy to say I did go in the sea a second time at a closer beach and right in front of my sunbathing spot. It was less stressful and I enjoyed it much more. It was lovely to end it with that virgin piña colada, sitting where I had watched so many others enjoying the shore.
Doing something different, outside of my daily routine is physically and emotionally exhausting. The holiday came with some wonderful highs and some incredible lows. Some of what happened was unnecessary and traumatic. Some of it was just down to being disabled and with a group, neither of which I want. Some of what happened was truly wonderful.
The parts that shouldn’t have happened were addressed fully by the holiday company. I have left out some significant parts but this is not the forum for them.
I cannot choose the people I go on holiday with, so my thoughts are now turning to ways of travelling without other travellers, just carers who are there for me alone. However, I am very doubtful this will be an affordable option.
I will take my time to think, research and plan. Who knows where I will end up next and who I will be there with. I do hope there will be a next time though. I don’t think I’m done yet…