Gramming it up

I recently started up an Instagram account for Frankie – some of you will have been roped in already. I guess I feel I should follow this little development up with a bit of an explanation.

The aim of @frankdidlee is to allow an insight into life with Frankie and his disability, that can grow with him. I have blabbed a bit recently in Frankie vibes on his disability and the importance of inclusion and figure that this is just a way of keeping that door open.

I guess I’m trying to be a wee bit proactive. Dealing with a disability like Frankie’s can be all consuming, and a bit isolating, and it takes a concerted effort on our part to stay connected to our wider family, friends and the world around us.

So, what better way to keep people from wondering what the hell has happened to us, and from making assumptions, than social media..

After all, (like it or not) most of us are all over it, and are sprinting around pretty much attached to our iPhones. We can’t keep up or see everyone regularly, and so I have found that instagram (surprisingly) is a good fit, and works on a few levels.

It’s new to me and definitely a bit of a rabbit-hole, so needs to be reigned in occasionally, but once initiated you can’t ignore the #ability of instagram images to make connections you never new existed. I would prefer it if Frankie didn’t necessarily appeal to russian strippers, but who am I to judge. You never know who is out there, and who might identify…

But seriously, apart from a handful of people in our lives, who regularly spend a lot of time with him, there isn’t always much exposure to Frankie. It takes a time to get to know him. He communicates with us in his own unique way and it is subtle, so you need to have the time, and to pay close attention.

Ultimately, we would like to give anyone the opportunity to get to know what he is like. The detail.. Partly because we get so much joy out of him, and partly because we want him to be known and not left behind. So even if it is acheived remotely, in images on Instagram that act to keep him on your radar, then we see that as a good thing.

Frankdidlee is bringing you the Frankie we know, by documenting his life as we see it.

His deficits have forced us to adapt to his needs, and to pay particular attention in order to connect with him. By focusing a camera on what he responds to, and what he likes and doesn’t (his people, places and things) I hope to document, as much as possible, life from his perspective.

Images of what he likes to listen to, the people who are his favourites, and the places he goes will all feature. To share how he deals so sweetly with his reality, communicates without speech, connects with his environment, and try to convey what he might be getting out of it all.

It is all being curated, so I am choosing what to show you, and what not to. I’m not going to show you the dirty nappies, or get all arty and include all the used suppositories he requires in a sculptural piece.

Unfortunately, I may get a bit carried away with things like birds and craft, and I can’t guarantee that it won’t get weird or boring at times.

Some photos will be specific and intentionally taken with a fancy camera and others will be quick snaps capturing a moment with a phone. All of it is supposed to be honest, and hopefully not appear too contrived, but rather be intentional. The hard stuff will be there too. I guess I mainly want the photos to speak for themselves.

Lastly, my final justification for this Frankie expose is that my memory is shot. It’s never been that great, but geriatric motherhood, all the stress and sleep deprivation has taken its toll.

Photographs are a tangible way of capturing the little things, and details that make up our life with Frankie. Taking photos allows me to clock and bank those memories, as well as focus and pay attention to these little things, which make the big things feel ok. So I find it relaxing and a good thing..for now anyway.

Gramm on..

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