Day 25 & 26: Steaming Across the Atlantic

I sit here on the third day of this transatlantic crossing wondering what to write about in this blog, something that I haven't really struggled with over the past three weeks. In truth, we are both a little underwhelmed by this crossing as it seems so very similar to our voyage on the way out, and it is quite a difference from our experiences of both Boston and New York, where we never struggled for things to do. Of course, we have attended and enjoyed some of the activities so far, including pub quizzes and film screenings (the film was 17 again, nothing particularly inspiring but watchable nevertheless), and even a lecture on the history of Atlantic crossings. But these are all in bite-size chunks, in between which there has been little to do. As such, I've come to view this part of the holiday as simply a chance to relax, and have already read quite a lot, and have otherwise been taking it easy. Probably wise given that I will soon be returning to work, something which seems quite distant after so long!

This part of the trip presents a new and challenging experience for my Dad and I, as we are now on our own, with my Dad being my sole carer for the next week. This is something that he has very rarely had to do, and never in the last 10 years, so we have both been a little anxious to see how it would work out. So far, we both seem to be holding up quite well, and Dad has been excellent at doing everything. We just hope that we can keep it up! In hindsight, recognising how big a task this is for one person, I probably would have arranged for another carer to join us, but at that time was put off by the fact that it's at least £2000 for another cabin, and no one was available to help at the time. Still, we will make it home, just Dad might end up a broken, shattered wreck by the end of it!

This experience has made me realise how invaluable the support I have had has been. It brings me back to a conversation I had about a year ago with another disabled person who also receives care, and like me this is funded by social services. This individual, who employs personal assistants to provide all care, said to me that the problem with using volunteers, as I do, is that it is disempowering because you are expected to be grateful for whatever you can get. While I appreciate the point, which is basically that when you employ someone, they are simply fulfilling their job role and do not necessarily need to be thanked for it, I do not think that this should be the case, and I think regardless of whether someone is paid or not, a little gratitude should be shown by us care receivers. In hospital, when you receive a good standard of care, you would still thank the doctors and nurses, even though they are being paid. And I think to ignore that is a danger which comes from focusing exclusively on disabled people's rights. Of course, I do firmly believe that we should have rights, but as with anything we also have responsibilities, which cannot be ignored. Seeing the situation that exists for many disabled people around the world, it is definitely the case that we are lucky to live where we live and get the support that we do. That does not mean we cannot push for a better deal (which is sorely needed in some areas), but it's necessary to remind ourselves sometimes of what we do have.

As such, I'd like to thank Jan, Marius and Steffen for all their help on this trip, which has made it all possible. And as for my Dad, well he has been truly fantastic throughout this trip, and as much as I hate to admit needing help, it is definitely true that I could not have achieved this trip without all the help that he has provided. We've had a bit of a running joke that I’ve become like the Queen, with him as my entourage dealing with things like carrying money, etc (as everything needs to be signed for, it's just been easier that way!). And sure, I can be independent at home when I have skilled, reliable personal assistants who I employ. But on this trip, while Jan was invaluable on the journey out, and the CSVs have been a significant help (particularly Marius who has done everything he can to make things easier), my Dad has been the only one I could really count on throughout my time here, to make sure I got all the support I needed and that everything went to plan, and where it didn't, to help me fix it. And he has really gone out of his way to let me make the decisions so it remains my trip, even when I know he has not agreed with everything I've decided! I know it has been very difficult for him to be out here, away from everything that he loves and enjoys for so long, particularly Mum and the dogs. But I think despite all this we've had some very good times while we've been out here and I do value this trip for the time it has given us together. I'd like to take this opportunity to thank him for everything. Thank you!