More than a Carer / Autism Project

[NDevon]

I'm starting this in the hope that it will motivate me to 'get on with it' but also to get some feedback from others so that I can pick the best route and stay on track.

I've been trying to think of a personal project for a while, I love people pictures, I've been dabbling with street photography and from that been taking pictures of people doing the jobs. I'm a carer, officially I have 2 disabled children, but in reality 3 if you count my daughter who's currently being diagnosed. I gave up work partly due to my own mental and physical health but also as my partner wanted to go to work - she gets to escape!

I used to run a charity supporting carers, I used to run workshops and courses, some we focussed on self esteem and the emotional side of caring. So many carers, I'd say pretty much every one I met, would introduce themselves as 'just a carer'. 'Just' - despite the often gruelling physical and emotional drain, the endless days and short nights, the loneliness and isolation, and the fact that it's often near impossible to do anything for yourself like a hobby or get out for an evening, let alone follow your dreams, have a career, go on holiday.

So I'm wondering if I can show how some carers do manage to have a work life balance, who do get out sometimes, and somehow document this other side to their life and the contrast to their caring role as a way of showing that in most cases you don't have to be 'just a carer'. I do need to be careful as this isn't about showing off to the carers who really can't get an hour out here and there. Often this is by choice, some just shiput themselves off from society and kind of give up, but there usually are options and some help - they don't always know how to ask for it though. I do wonder if I can somehow document this side too, to show the contrast, on one side people who kind of just love to care, in fact they don't love, they are existing, and then show how having more to life than just caring can make you so much happier, to help force change and improvements for the lives of those carers who don't get the opportunities.

I don't know, maybe it's not something I can actually document at all. I've given it a lot of thought, I have seen all aspects of the conversation, I've supported carers who had nothing to look forward to and helped them improve their lives, ive met carers who manage to have a career, this was all in the West Midlands though and I'm now in Devon, so I don't know the people, I'll have to find them. I think I can, I'm involved with a few projects, it will take time but could well be worth the effort and there is no rush.

One thing I could do is keep it to carers of children and young people, that may focus it a little and give me more opportunities. Also children mostly go to school, so it does give the parents more chances to work or do something else. However there is more to caring than just being a carer of a child, caring for an adult who doesn't go to any adult services is a tough life and not something I'm relishing in a few years when my turn comes.

Any thoughts or comments?

Another project I've been considering that I could do alongside or instead of is around Autism, which is both a specialist subject of mine and a bit of a fascination, having 3 children on the spectrum and having worked with hundreds of children and young people with autistic spectrum conditions. I've been thinking of a positive spin on autism, the other side if you like. Show their special skills and interests but outside of what people think they are good at, surprising and inspiring stuff, removing the stereotypes and breaking down the barriers. Again not entirely sure how in photographs, but I guess that will come to me when I meet the children. I don't think I want to do this project in isolation, as I'm really keen to do something with the carers. Carers get a raw deal, but also very stereotyped, I wanted to show that we are not all quite how people think.

I know I've written a lot here but I wanted to share my thoughts, I've been looking through many of the projects others are doing and they are so inspiring, I'd love some feedback with my ideas and a bit of a push to get on with it!

Thanks for reading

 

[Ed Sutton]

Immediately on reading your statement I thought of Jim Mortram http://smalltowninertia.co.uk/about/

The first thing required for any project is access. Then you need permission. As you know what being a carer entails this should help on both counts, and inform the sorts of pictures you will make, which solves the problem of working out what you want the project to say. I'd suggest starting somewhere and seeing what comes from it, and then refine the project. Making it too wide ranging is not a good idea - as I have found from personal experience. Keep it focussed.

Edit - there is also Michelle Sank's project about young carers - https://www.theguardian.com/society/gallery/2009/mar/25/young-carers-photography

Do some research and find out what others have done in a similar vein.

 

[NDevon]

Thanks @Ed Sutton - I feel incredibly lazy now for not doing the research better. I have been researching, but not come across Small Town Inertia.

I've seen the Young Carers stuff before, I have done. A lot of work with young carers in the past including some film work, I didn't get any satisfaction working wi them, amazing young people, all it did was totally depress me that their lives are so utterly devoid of the stuff kids and young people should be doing. I met a young lady who was in her teens, she had been giving her mum injections since she was 5 - that's not something I was able to deal with I'm afraid, instead I spent a long time fighting the local authority about how they support young carers. I guess that was my way of dealing with it. So I won't be doing young carers stuff, I'll leave that for someone else or maybe revisit it when I feel able.

To your points. Access - I know some, but I can get to hundreds through various groups I'm in contact with, I'd put together an editorial piece that people can read, if they are interested they can get in touch with me. The permission wil come with the access, but I'd hope the fact I've worked with so many carers, have a good understanding of many disabilities and illnesses and I am a carer would help them to feel comfortable talking to me. Obviously there would be questions and I'd enjoy discussing them and explaining what I'm doing and why.

I'm just wondering about the autism project too, I wonder if I can start them both and see where they go, I have the time to do both, there is some cross over but also a lot of differences. Autism 'stuff' is done a lot, but I feel I've got so,e ideas about a very different way of looking at it, and I've also got the personal angle too that some have but not all.

Thanks for your reply, it's helped me think some more

 

[Ed Sutton]

It seems to me you have a fair idea of what you want to achieve. I know there's some nemonic about perfect planning, but there's always the risk that all you'll ever do is plan, so I'd suggest making a start ASAP.

 

[NDevon]

It seems to me you have a fair idea of what you want to achieve. I know there's some nemonic about perfect planning, but there's always the risk that all you'll ever do is plan, so I'd suggest making a start ASAP.

Yea, I'm only too aware that I could think about this for the next 9 years and not actually take a picture, I'm going to put some text together and see if I can get so,e organisations to put it in their newsletters and social media.

Thanks for reading and replying - much appreciated

 

[Ed Sutton]

Good luck.

 

[jennyb]

Hi Marc, I think you have the makings of a great project. I don't think that people really understand the world of a carer. Highlighting their everyday lives, their concerns and the limitations they have would be a real eye-opener for many. I am a carer and that is one of the reasons that I am working on a project to document my own garden. I don't have to go very far to do it and can integrate it with my carer duties! Being a carer is very isolating (or maybe, as you say, I am isolating myself) but I think most carers probably work out a life that is right for them.

I agree with Dave @Ed Sutton that it would be best to keep it focused, but once you make a start you can diversify if you think it is justified. Perhaps you could do a bit of a trial run at first to try to get your thoughts in order?

Whatever you decide, I wish you best of luck and, of course, please keep us updated on this forum.

 

[NDevon]

Thanks Jenny. I think you are right, if I sit and plan how I will thin it down or focus it more I'm never going to do it, the best way is to make a start and see which route it takes me. I have a feeling it will naturally find its path, it may end up being very different again.

Caring is isolating, and yes we do isolate ourselves, sometimes,es that's a bad thing but often it's for good reason. I know a lot of carers who stopped spending time with their old circle of friends because the petty stuff the others moaned about and had issues with were just so trivial and depressing compared to the situations they found themselves dealing with in their caring role. Real friends would be there to support them, but it turns out in most cases that hey didn't need them.

I used to love having lots of people around me, now apart from my partner and children I don't really see many people other than passers-by when I'm doing my thing. I enjoy not worrying about other people, I get told I must be lonely, I don't actually tell anyone else I'm lonely. We do get told how hard and terrible our lives must be but we rarely feel the same way, life is a bit rubbish sometimes and not many people would have chosen this path, but it is what it is and we just get on with it. I adore my kids and don't feel anything other than love towards them.

Ok, some days I could quite happily strangle them and bury their bodies in the garden, but those days are few and far between! And ultimately that's why we have hobbies like photography, our gardens etc.

I love your website and your project, really lovely photos and what an amazing garden you have. With a garden like that you have lots to distract you and probably enjoy the isolation We used to have a garden something like 30' wide by 20' deep until we moved to Devon, now we have around half an acre, I feel lost just going out the back door. I don't do gardening though other than the lawn and 'industrial gardening' - I will happily destroy something, but I'm rubbish at growing stuff or looking after anything. Heck I forget to feed the kids some days, no way would I be able to look after a plant!

 

[sworks]

Can't offer much advice I'm afraid other than I have a daughter with CP and a son on the autism spectrum and it sounds a good idea as a project. I look forward to seeing how this pans out. I shared a post on Facebook recently of a photographer who had an autistic son and he documented his behaviour to try and get a better understanding, it was fabulous to see his photos as my son refuses to have his photo taken

 

[NDevon]

Can't offer much advice I'm afraid other than I have a daughter with CP and a son on the autism spectrum and it sounds a good idea as a project. I look forward to seeing how this pans out. I shared a post on Facebook recently of a photographer who had an autistic son and he documented his behaviour to try and get a better understanding, it was fabulous to see his photos as my son refuses to have his photo taken

Thanks Mark, I hope it does become a fab project. I'm still mulling over the idea of an Autism project, but I'm not sure what to do with it. One idea was to show things autistic children (and maybe adults) love to do and are good at that differ from the stereotypical norm that people consider people on the spectrum do. I do feel the world has so much to learn about autism, and the benefit for me is I could get the project shared a lot more widely. Maybe I can do something with the parents and carers as part of the project.

I'll have to see how it goes, I've sent a load of emails out to groups I know to ask for parents and carers to get in touch with me if they would like to talk about it, hopefully I'll get some responses