Deeply Furious Linkspam

Sarah Campbell is a long time friend of mine, she's also the principal author of the Spartacus Report, which had so much influence when it launched tin 2012 that it means she was largely responsible for inflicting the first defeat on the ConDems in the last parliament (they subsequently weaseled their way out of it by declaring the Welfare Reforrm Bill was a 'Money Bill', which was unprecedented for any bill other than the budget, but meant the Lords couldn't stop it). So imagine my horror when I see her posting that someone has been attacking her as a 'traitor' to disabled people, because she happens to have done the Spartacus stuff in conjunction with Sue Marsh, who has since gone over to the Dark Side. I've heard similar things from a couple of other people.  Apparently any of us who ever had anything to do with Sue are traitors to the cause.

This is all in response to the idea of setting up an umbrella group to give disabled people a national organisation that isn't in the pocket of government, which was always going to be slightly controversial, but we were actively trying to set it up to accomodate a range of opinions. But apparently that isn't acceptable to some people and they're resorting to personal attacks. There are persistent rumours this is coming out of one of the major campaigning groups, and I just hope it's not coming out of their leadership. Unfortunately I have also heard this week that some of their representatives openly stated that only on-street protest counted when speaking at the TUC Disability conference. Seeing as most of the Spartacus-related campaigning was done by people who aren't well enough to campaign on the street (and that they're also my friends) that's disturbing on multiple levels,

Anyway, here's Sarah's piece:

An Unfond Farewell to Disability Activism

Deeply, deeply angry over this.

So I cut the hedge*...

... from the wheelchair.

This turns out to be rather more comfortable than doing it while standing, which in previous years has involved ankle braces, a knee immobilizer and my crutches just to keep me upright for more than five minutes**. As you can imagine combining crutches and a pair of long-handled shears is a rather interesting process.

Doing it from the chair takes the whole wobbly remaining uprightness challenge out of things, and it turns out to be much easier to get at the bottom of the hedge. The top of the hedge, not so much. I ended up taking the strimmer to the worst of it :)

I'm using my boot icon on this entry as I don't have a wheelchair one as yet (I've photographed the chair specifically for that, but I can't quite figure out why phone and PC won't talk to each other, they used to), and it's about a year exactly since that photo was taken, after I'd locked myself out, climbed onto the wheelie bin to unlock the back gate and promptly fell off the wheelie bin, badly spraining my ankle. Just to celebrate the anniversary, my ankle started hurting again last night. My ankles are wobbly enough this isn't particularly unusual, but the pain yesterday was sufficiently stabby that I ended up getting the boot out again. It was still sore this morning, but has worn off since. Wearing the boot again reminded me how awkward it is, not particularly for immobilizing my ankle, I'm all in favour of that, but because the rocker sole is about three inches thick. I've got about a one inch leg length discrepancy  at the best of times, and of course it's the ankle that results in the two adding together to give me a four inch discrepancy, not two inch, I swear if this starts happening with any regularity I'm going out and buying a pair of flatform trainers to even myself up, no matter if they say 'womens' on the label!

* It's at the front of my house and unless I trim it back once a year it starts taking up unreasonable amounts of the footpath - call it four metres long by about four feet high. The non-path side is a shrubbery, so managing it from wheelchair or crutches is a bit of a chore, but it's sloped so steeply managing it would be an issue even if I lawned it. I prefer to let it grow wild and do the minimum necessary maintenance.

** For people who are new via the friending meme, or who have otherwise arrived since the last time I mentioned it, I have Hypermobility Syndrome, and I could probably swing a diagnosis of Ehlers-Danlos Syndrome, Hypermobility Type if I pushed at it, but haven't bothered as yet. HMS/EDS is a connective tissue disorder, and means all your collagen etc doesn't behave quite as evolution intended, so ligaments and tendons don't hold your joints together particularly well, which means your muscles have to do it instead. It's estimated someone with EDS is working about nine times as hard as someone without, even just to sit still. HMS tends to come with a side order of Chronic Pain Syndrome, and people with CPS tend to have at least a degree of Chronic Fatigue (even without the working nine times as hard thing). Isn't all this interconnectedness marvellous!

The dodgy connective tissue means full dislocations or partial ones (subluxations) are very common for people with EDS/HMS (we call ourselves Bendies), I'm fortunate that I rarely sublux anything, but I do seem to be getting slightly more happen as time goes by - I managed to sublux my hip a month or so ago just by my wheelchair's seat flexing as I rolled across a kerb cut. Fortunately it went almost straight back in, but the air turned blue for about 30 seconds. And there's pretty much not a part of the body that doesn't use connective tissue in some shape or form, with the digestive tract being a common source of problems. Some of the other EDS subtypes are particularly nasty, life-limiting in the may-spontaneously-drop-dead sense, rather than the has-physical-issues sense.  I'm lucky enough to have fairly mild symptoms,  but I've used crutches since the mid-90s as my hips and pelvis are particularly shot, and with my shoulders showing signs of problems, I've recently switched to using a wheelchair outside of the house.*** I also have dyspraxia (like dyslexia, but for movement, also affects working memory and executive function/planning) and last year a psychologist who was supposed to be assessing my pain management spontaneously segued into trying to decide if I have Aspergers - his conclusion was I'm probably somewhere on the spectrum, but it's not his specialist area (even though he actually manages the local autism service).

** Oh, hey, I hadn't intended doing anything for HMS/EDS awareness month, but there you go!