A part of my body – me and my Action 3

When you’re given a wheelchair on the NHS it’s expected that it won’t be replaced for five years.  The exception to this rule is if you’ve had a change of need.  For example growing up I never, ever, hit the five year mark because I was growing taller and needed bigger chairs.  I was told when I got my current chair and asked for clarification of what a change of need might be that they “wouldn’t expect to see a change of need in someone with CP.”  The five year life of my Action 3 (my current manual chair) is up in about six months.  So I’ve been thinking over the last few weeks about wheelchair use etc.

First of all this is the first chair I have ever had from wheelchair services where I’ve reached the five year mark with it.  I’ve actually been back to wheelchair services for reassessment and/or major tweaks twice in the life of this chair (well three times, but two of those visits were linked) and I’ve had I don’t know how many visits from the mobile technicians to do repairs.  When I went back to wheelchair services last year (when my cushion started leaking gel, basically exploded and had to be replaced) I asked the OT about the five year rule.  She said they don’t automatically replace a chair after five years but look to see if it’s necessary.  She also added that with someone like me who they consider an “active user” they would anticipate having to replace the chair.

So you’d think that I’d be thinking six or so months ahead and bouncing with the thought of a new chair to come. Maybe start looking at options I could get if I got a voucher instead of a chair.   If they literally made me wait until October when the five year mark hits I’d be looking at a new chair for Christmas if time scales work to their best or knowing how these things often turn out more likely early next year.

But I thought about it.  And after not very much thought at all I came to the shocking conclusion: I don’t want to ask for a new chair.

I consider my wheelchairs to be a part of my body.  More so my manual than my powerchair now I think of it.  I wonder if that’s because I’m physically using my body to move the manual rather than just my hand to move the powerchair?

And this manual chair does mostly what I want it to do, when I want it to do.  It’s a bit like my actual body in that sense because it likes to have it’s strops and it could definitely be better but we work well and we’ve reached a good compromise.  I tip to one side and it catches me.  I reach for something in front of me and it moves with that movement as well as with purposeful wheeling. It was the first wheelchair I had that could sit me this upright and reduce my back pain.  And a couple of years ago it gained the most comfortable cushion I’ve ever had.  One that I sort of melt into and that has more support under my left side than my right so my hips are level.

Of course there are bits I don’t like about it but that’s always going to be the case with any wheelchair I have.  I don’t like how easily the footplates break with any force.  I frequently spasm and snap them.  I did it early February and I did it again in early March.  I have the NHS wheelchair maintenance team though who come out when I need them at no cost and no fuss.  A couple of years ago when my backrest broke and I couldn’t sit in my chair they came out within an hour with no complaint or no fuss.  I apologised for calling out of hours and ruining their Sunday.  They didn’t mind at all.  And that was on Easter Sunday.

If I go back to wheelchair services I believe I’ll be offered a choice of the same chair, 1 other chair or a voucher (where they would give me the money they would spend on a chair for me and I could buy something different or better with it and a top up of my own money).

I don’t want a voucher.  I’d lose my access to the NHS maintenance team and given how reassuring and how useful that is I don’t want to do that. Plus, with most of my out of the house mobility being in my powerchair I don’t really need an ultra light weight, sexy manual.  It’d be nice but not so nice that I’d spend a grand and a half to top up a wheelchair voucher as well as god knows how much for five years of repairs and maintenance.  I don’t know what this hypothetical other chair would be.  But I do know that usually they offer one rigid and one folding so it’s probably a rigid one.  And that other than that the one I was offered before was much of a muchness to what I’ve got now.

What I’ve got now works.  it’s a part of my body.  I don’t have to think about where do I put this hand when I transfer.  I’m sat on my bed or my shower seat or whatever and my hand and my chair find there own ways together and to just the right place where I need them for a transfer without conscious input from me.  I’ve got my spiel for folding it down “you see those yellow stickers on the side? By that there’s a catch…” and I know what sort of obstacles it can handle and what it probably shouldn’t but I can just about force it over.  When I get back in the boat after sailing and Dad tells me “don’t freak out but your chair’s broken.” I know at a feel and at a glance when it actually is broken and when its just a case of someone moved it without me in it and found a design feature they didn’t know about.

My wheelchair isn’t a tool.  Society would say I’m wheelchair bound or that I’m confined to a wheelchair.  It’s my freedom, my independence and my life wrapped up in metal and wheels.  If I am ever bound or confined by anything it’s societies attitudes and the barriers they place in my way.  Not by my chair.  Never by my chair.

It’s battered and it’s scratched and I’ve destroyed so many plastic clothes guards that I got pissed off and stopped asking for them to be replaced but pulled them off instead.  It screams my personality by the fact it’s perpetually dirty and shows off my status as a long haired crip who knits and crochets by the fact there’s almost always a pile of hair and a scrap or five of yarn wrapped round the castors.  I bear the scars of my life.  So does this chair because it lives and loves it with me.  And I think it’s got a few years left in it yet.

2 thoughts on “A part of my body – me and my Action 3”

  1. Maybe I don’t read many blogs from writers in wheelchairs and maybe I don’t know what is published around wheelchair use/ownership but I really think this is worthy of wider publication. The NHS maintenance team seem to be pretty sound and I am glad Emma is blessed with them. The best bit is the depth of the reflection and I end up thinking ‘I never would have thought of it like that’. Good one Emma

  2. “If I am ever bound or confined by anything it’s societies attitudes and the barriers they place in my way. Not by my chair. Never by my chair.”

    Yep, good one!

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