Okay, so I know I said I was going to be updating this more regularly, and I didn’t realise how long it had been until I logged on again, but I do have some positive news to share.
I’m finally moving into an adapted wheelchair accessible home! It’s been over 4 years of being on the waiting list, probably nearer 5. I’m sure I’d put myself on the list when I got turned down for a wheelchair because I wasn’t living in an accessible property (I needed to anyway, I was moving around indoors by leaning on the walls for extra support because I had to leave the chair at the front door), and it wasn’t until a few months later – February 2016 – that I fell & broke my pelvis, which lead to the OT phoning wheelchair services & telling them to stop being ridiculous. The even bigger irony? I was also told I wouldn’t be housed until I got a prescribed wheelchair, the same one I couldn’t get until I was housed somewhere accessible 🤦🏼♀️.
I moved into Memory Loss Manor in Autumn 2016, so I think I’ve done my dues here. Some of the Oldiewonks are really lovely and I will miss them, but some can be quite shitty, like blocking my exit from the lift so they can tell me off for parking in my assigned spot. Plus, I’m not sure my knuckles can take any more bashing on the doorways. (That sounds quite rude and it really isn’t 🤔) I was grateful to have somewhere the wheelchair could at least get in to when I came out of hospital, and although it’s been 10 x the 3 months I was told it would be, I have to recognise the privilege of having had a roof over my head when so many others don’t.
So, my new home… It’s a quaint little bungalow (that’s British for small), in a quiet cul-de-sac about 5 minutes drive from the town centre, which is where I live now. It doesn’t currently have an adapted kitchen, but they are putting one in for me so the units will all be at wheelchair height, with the sink having a rise & fall mechanism so that other people will be able to wash up & clean for me. The hob & other surfaces will be empty underneath so I can roll underneath them, and I’ll have an oven housed at a safe height. For the last 3 years I’ve just had use of a microwave because a standard cooker would be too dangerous. I’d have to be completely outstretched to lift a pan on the hob – shaky central, and I’d be leaning down to the floor to get anything out of the oven, both a struggle and a risk of falling into it head first. With my mental health, they might think I was trying to do a Sylvia.
It’s already got a wet room, although I will miss the bath (I’m going to measure up to see if I can squeeze one into the space available). Everyone assumes that wet rooms are perfect for every disabled person, but if you’re like me and find holding the shower hose quite tiring, and have hair that takes a fair bit of maintenance, it can get quite cold sitting there without any water hitting you whilst you’re in your birthday suit. (I have to hold the hose because to position it high enough to run over your head means putting it out of reach, and if you’re standing under a shower you can step in/out of the stream of water as you need to to soap up, shampoo etc. You can’t do that if you’re sat in a fixed spot under a fixed stream, and stretching to move your head for long enough is a killer on your back/neck). Sometimes I crawl into the bath after several days illness, desperate just to be able to breathe through my nose again, and need to sit for 20 minutes before I even begin to start washing my hair (which takes ages because there’s so chuffing much of it). I may have to consider going for a drastic chop if I can’t wallow in my own filth between shampoos.
If any disabled people reading have a workaround/solution for this, please let me know because it’s something I’ve always struggled with, especially since I’ve got weaker.
I’ve also got a garden at the back where they’re going to build me a patio I can roll out onto (I was given the choice of a ramp or patio, I think that was an easy choice), and a little area at the front for a big bush or some pot plants. Everyone seems to keep their front areas nice & tidy, and although I’m not green fingered at all (I struggle to keep an indoor plant alive), I’m lucky that my parents all love gardening & my s’mum is very keen to get stuck in.
It needs decorating throughout, only the bedroom & bathroom are decorated (and the blood red death wall is not for keeps! 😳), so I’ve got lots to do in terms of picking out wallpaper, paint, flooring and then arranging for it to be decorated. A blank canvas is a bonus though, as I’m quite particular in my tastes. I hate anything too modern, like the quirky & unusual, and have a penchant for things adorned with decorative swearing. I did contemplate decorating the living room to resemble Dolores Umbridge’s office, but I don’t think I could quite take that much pink without reaching for the anti-emetics.
There are some downsides. There’s no allocated parking spaces (or any marked spaces at all) so I’ve got to hope the neighbours are nice & let me park closest to my house, or pay for a disabled bay (which technically anyone with a Blue Badge can use). If I can’t park in at least one of the two spots near to my door, then it’s a hefty slope to the other side of the parking & I can’t push myself up it – I’ve tried. Judging by how petty people can be when they haven’t even got a car (looking at you, old man who tried to tell me off), it does make me anxious until I move in & know the lay of the land.;
There’s only one bedroom. There was a lot of back & forth between Doctors, a housing charity that were helping me, and the housing officers who disputed that I should be allowed to have a second bedroom to store my medical equipment & space to allow someone to stay if they needed to care for me. I could have refused the property on the basis that it didn’t meet my needs, but I didn’t fancy waiting another 3/4/5+ years for something better to come up, so I’m just going to put some equipment in the outside storage cupboard, keep the power chair inside, and get a decent sofa bed for guests to stay;
Because the area is hilly, it’s a very steep drive up into the cul-de-sac, and at present, there isn’t a drop kerb on the pavement at the top of the hill, so I can only use the road with my power chair until (hopefully) they get that fixed. The housing officer has said she’s sending a request over to County, so I’m hoping she’s got some sway. If it snows I’m not sure how the car on summer tyres or p’chair will cope with that incline, but unless I have an appointment, it’s rare that I really need to leave the house anyway.
Aside from those niggles, it’s pretty much perfect for me in all the other aspects. I do have a tendency to get anxious easily these days, and can be hyper-aware of my vulnerability (when before* I used to be a little bit more of a risk taker), so I can get hung up on the little things too easily. I cried when I found out I couldn’t have the kitchen I’d already chosen from the website because it wasn’t on the options list, until someone pointed out that I’m getting a kitchen I can use – something I’ve not had for years (I think I’d stopped using the kitchen at my old house about 2/3 years before I left, I just couldn’t stand long enough to make food, and if I could, I couldn’t have carried it anywhere on crutches), and I started to get some perspective. I’m sure people see me as a moaner (and looking back at my old social media posts, I really did whinge about nonsense), but in reality it’s just me being quite scared of what might happen if I get stuck in scenario where I can’t help myself.
The kitchen & other things they need to add (like a railing to the door & bathroom sink without a pedestal), have all been ordered and I can move in once the work has been completed. That should be in about 4-5 weeks. Luckily they’re being flexible on when I have to vacate MLM because unfortunately unlike a healthy non-disabled person, I can’t just be able to pack up & move on my own steam, or when someone else needs me to, so I’ll be trying to do small things to prepare in the meantime, and then taking any offers of help I get when it comes to moving day! Once I’m in, I can sleep for a week and spend the next few weeks unpacking as and when spoons allow.
It’s going to be a busy couple of months, and I am really excited (and scared, of course!) but I think my bones/muscles (ha!) are already wincing at the impeding energy expenditure.
I’ve got in my mind that I’ll do a post about how I’m going/planning to make it (and myself) ready for independent living, but there’s a strong chance I’ll be too fogged up/tired/forget/end up doing in it 2020 💁🏼♀️, so if I don’t write again, see you on the other side!
p.s., Unless anyone isn’t clear, I know I moan, but I really do know I’m lucky to get this. I have so many friends online who are in other situations who don’t have access to what I do – our friends across the pond for example, and those in countries with nothing to offer disabled people at all. As an Intersectional Feminist, I believe in fighting for those who are underprivileged in many ways, not just the middle class white women who are fighting the patriarchy from a position of privilege (The old me who didn’t know how lucky she had it).
bɪˈfɔː/ – My old life, before I got sick/crippled and could do pretty much anything I wanted to do.
See also: ‘The old me’
p.p.s., I actually wrote this last weekend (28/04) but ran out of brain 🧠 before adding the images & writing the captions/alt text/descriptions (I find that so hard for some reason!) it’s taken me until now to add 3 pictures & text (which took 50mins…).
p.p.p.s., I couldn’t publish when I finished last night because something weird happened with the image formatting & whole portions of the code were missing (along with the text I’d written), I could see it in the history, but couldn’t load it without it crashing. Had to manually fix today. Accessibility can be a pain to do sometimes, but that doesn’t mean you get to skip it. 🤨