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Natalie

There are sometimes moments when you do not know what to do with what you have just seen or been part of.

NatalieRecently we met Natalie and her live-in care-giver Michael on a Thames ferry. Natalie suffers from very limited vision, among many other things, and was captivated when Valari showed her images from an iPad which were big enough for Natalie to actually see and enjoy.

We talked with Natalie and Michael for some time and were honored with their openness and trust of people they didn’t know. They were on a day trip up and down the river — something that Natalie can manage and enjoy from her wheelchair. She has degenerative arthritis, and several other conditions, including a skin disease which has the arresting quality of making her face seem ageless. Natalie says her mother describes her as “looking like I’m 13”. The depth of her nearly sightless eyes was, for me,  the only clue that Natalie is 35.

Her chair was comfortably placed at the front of the boat were Michael could sit close by and they could talk and she would not be bumped into, which is very painful.

After taking a few pictures, I sat down and talked with Natalie — bringing myself (for me) uncomfortably close to her face so she could see me and so we could hear each other over the boat noise.

We spoke about our lives and where we were going and what we had seen that day. Then she began talking about mobility as a big problem. I was somewhat surprised at this because in the UK it is much more common to see “disabled” people on public transport, or in the markets or along the streets. Natalie stunned me by saying that sometimes she is threatened or forced off buses by “kids” who resent her in some way and express it by making her expendable. She and Michael live in a lower income east London suburb and last week were taken off a bus when some one said: “We’ve got three buggies trying to get on but there’s no room! Get the fuckin’ chair off the bus, get the fuckin’ chair off so the mums can get on…!!!”

So, how do you respond to a sudden plunge into the dark side of the life of someone obviously challenged every minute of every day?Natalie with carer

Why did I talk to her to begin with — curiosity? the photographer’s reflex? guilt at my own good fortune,? not wanting to ignore her like everyone else was?

It’s clear that many of us avoid engaging  with “disabled”  people because we immediately sense a host of these uncomfortable questions.

The best answer I have is that I probably sought out Natalie because of my own selfish human wish to make contact with another and guessed that she might be, by virtue of daily practice, more at ease than most of us with quickly getting to answering and asking the essential question: “who are you”?

In any case, it has me thinking about:  why am I much more reticent to talk about real life with so many “normal” people?

I hope Natalie and Michael took something good away from our short time together — I am sure about that. I know she and the questions will stay with me.

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Richard Varnes