Rites of passage are events that we pass through, actively or passively, during our lives.
Baptism or naming or equivalent ceremonies.
Starting little school. Then big school.
6th form college or FE college.
Starting work, or trying to find a job.
Marriage, children, grandchildren, retirement…
These are big steps along our paths.
Well, I have just taken another.
I have put on sunflowers.
I’ve grown sunflowers for years, usually those giants, which children love so much. Last year I changed to a shorter, more prolific version, which provided hundreds of cream and brown cut flowers all summer.
And yesterday I wore sunflowers for the first time.
I mean, of course, the sunflower lanyard that signifies a hidden disability.
I was with my lovely DEEP friends in London, working to develop a process for ethical approval of research devised and led by people living with dementia. And planning the second cohort of Dementia Enquirers Research Projects.
When we went back to Euston to go home I decided to admit and flag my hidden disability when I travel, and I picked up a sunflower lanyard at the assistance office.
Until now I have felt pretty much ok on trains. Yes, I have now and then made mistakes, gone North instead of South, forgotten my ticket, etc. But I have felt quite able to deal with whatever happened.
But in recent weeks I have frequently felt dazed and just not quite with it. And there were many periods of this in london during these two meeting days.
The others with me used the lanyards, and got taken to the train by the kindly staff. I think I would not have had the confidence to join them if I’d been alone, but together we are stronger, aren’t we?
Putting that lanyard around my neck, attaching a plastic card holder with my name and ‘I have dementia’ inside…that is a big statement, a big change, a rite of passage.
And it had an effect on me. I was changed. Just slightly, but noticeably…I became someone with a disability.
I became someone who might need a little help. Someone who would willingly accept help. Someone who might not cope without a friendly face and a little more time to think and choose.
Someone who might sit waiting and simply forget to catch the train. Someone who might stumble or wobble along the platform and into the train. Someone who might not have the right tickets to offer to the train manager.
(I have done all those.)
When I put on that lanyard I felt safer. I felt that if I struggled staff would help.
But I also took a step back from independence. I became less self reliant, more dependent on others. And perhaps I said to myself, I will just allow others to do some of the thinking for me.
I suppose I withdrew a little. Admitted I was slightly vulnerable, but safe within the protective tea cosy of the sunflower lanyard. The label. The call out that ‘Hey, I may need some help here’.
Not waving but drowning.
The danger is that I will stop doing the hard work of thinking it all through, and making sure I am in the right place at the right time, facing the right way. I won’t care so much if I get it wrong because, well, someone will help me out.
And that may be inviting trouble. Or ‘losing it’ because I’m not using it.
But we’ll see. After all, not all travel staff recognise the lanyard. Not all companies have trained their staff around it. Transport for Wales? Arriva Buses? Hmm.
But on long distances I think the time has come. Because I cannot know when that dizzy, faint, forgetfulness may come. And things don’t quite make sense as they should.
And perhaps I should wear it in Tescos, and M&S, and other stores as well. And just get it out there.
At least it will remind staff that hidden disabilities exist. And while many staff are very helpful and nice anyway, there are others who need reminding!
Just as a footnote, the Avanti staff member in 1st class yesterday from Euston was fabulous in many ways. Incredibly attentive, generous with nibbles, kind. But…he spoke so fast I could not work out what he said. He asked if I would like this or that, but so quickly I could not make the decision. So he just gave me everything as I mentally chewed through what I had heard, and what I had been offered. Slowing down would have been better. Not just for me but for everyone.