Victoria S

So frustrated. The council finally sent a workman to install a disability-friendly toilet after a year and a half of repeated, embarrassing assessments (including being asked to repeatedly demonstrate getting on and off the toilet so they could see my mobility struggles—fully clothed, of course, but still very invasive, humiliating, and dehumanizing. I wasn't a person, just a cost issue the council wanted to find a way not to pay for. I suspect the only reason they didn't deny it in the end—handlebars were installed within a week of the initial OT assessment—was because my occupational therapist kept pushing them. I suspect she reminded them it's a legal responsibility).

Anyway, it finally got approved, and I was informed just last week that the new toilet would be installed yesterday. Only when I asked about the floors (which had been a concern I'd repeatedly reported—under the vinyl, the wood is spongy, and the walk-in shower is unsafe, unlevel, and leaks water, hence why the floors are spongy from rotten wood—I mentioned it at every embarrassing assessment and every time the council had to send an emergency plumber because the unstable floor made the toilet wobble and often disconnected from the pipes), the plumber told me he hadn't been informed about the floor but not to worry—he’d replace it as he put the new loo in.

My gut told me it wouldn't be that simple. My gut was right, but not in the way I expected. The plumber came yesterday while I was still struggling with a bad fibromyalgia flare-up due to a tummy bug a couple of weeks ago. He lifted the vinyl to see that the wood was basically mush, then started lifting the rotten wood mush up to find asbestos tiles underneath. So, work had to be stopped. His manager was called to assess and confirmed—yep, asbestos tiles. And they were damaged, as the rotten wood had been screwed into them and covered up.

The plumber wasn't happy. He rang the council, and I heard him chew them out over it. I didn’t hear everything he said, as he left the flat while talking, but as far as I’m concerned, there's no excuse for asbestos still being in a council home these days, it should’ve been sorted long before I moved in. I did overhear the plumber tell them again about the shower floor, saying it’ll just cause more work down the line if he’s not allowed to fix that too.

Within half an hour, a housing officer rang me to say council surveyors were coming to assess the situation, and I'd be put in emergency accommodation while the work was ongoing (since, with my disabilities and already being unwell from this fibromyalgia flare, it wouldn’t be safe for me to stay there). Within another hour, I had about 7 or 8 men in my flat, plus the original plumber (who was great, he let me rest on the sofa, dealt with the different people, reassured me often, and when I was told it should only take a couple of days, he informed me that while it should take days, it would probably take a week, maybe two, mostly due to waiting for work to be assessed and approved).

One of the surveyors mentioned that the flat should be due for a full kitchen and bathroom refit soon anyway, and he’s going to try pushing for the bathroom refit to be done while I’m already temporarily housed somewhere safe—saving them from having to repeat this process in a few months. Still unsure if that’s actually going to happen, but I do know the asbestos tiles will be removed and the floors fixed. Hopefully, the shower floor too.

Within another hour, the housing officer was back on the phone. She’d found a care facility for vulnerable adults for me to stay in while the bathroom is being fixed and even arranged a taxi to move me there, plus £10 per day to cover food costs. She’s been told to expect me to be here for ten days, but she booked the room for two weeks to be safe.

And I thought—far from ideal, but at least it'll be safe. But I’ve had negative experiences in "supported" (I say sarcastically) accommodations in the past, and while everyone here seems friendly so far, it still set off my cPTSD and dissociative symptoms. Once I arrived at the care home yesterday, I completely blacked out until this morning, dissociated from the stress as well as the pain from the fibro flare-up.

Just resting today. Ordered a small food shop to tide me over—only got a microwave, kettle, and small fridge, but that’s fine for a few days. Got some pot noodles, sandwich items, and chilled microwave meals (boy have they gotten pricey! I haven't bought any in a while, preferring to batch-cook on good days—though those are becoming less frequent—and freeze what I can for bad days. I was shocked to see nearly £4 for a refrigerated fish pie for one from Asda online).

Once the asbestos was discovered, I was impressed by how quickly—and for the first time ever, when dealing with the council about anything related to my disabilities. Respectfully, they handled getting me somewhere safe and supporting me through this stressful situation. And the plumber who came out was amazing - reassuring, honest, and didn’t belittle me or act like I was incapable of understanding. So that was a positive experience.

But it’s hard to feel positive right now. I was assured the flat was safe when I moved in. I even asked if it was due for an upgrade soon when I visited before moving in summer 2023, and I was told it wasn’t as old as it looked—"maybe ten years." But I know for a fact that back in the late 90s/00s, councils were made responsible for removing asbestos from council homes—we had two weeks of work done in my childhood home because of it, and I remember being moved. So, it should have been done long before I moved into the flat. Instead (to paraphrase the lovely plumber when he talked to the council), "the last workers just covered it up—lucky it hasn't caused any major issues, especially with the wood rotted from the leaking shower base."

I texted all the neighbors I could to suggest they get their bathrooms checked—just in case. All these flats are the same, all aimed at vulnerable people—mostly elderly or disabled, but some young families or single tenants in upper levels. The plumber agreed that if my flat has asbestos, most of them probably do.

Then there's the anxiety that comes from being a disabled and vulnerable person who needs to be independent but has had horrible experiences with so-called supportive services. It’s a fear many disabled people have—being put in a care facility due to some emergency and not being allowed to leave. I know logically I’ll be back in my flat in a few days—weeks at most—because while I’m disabled and have had poor experiences, I’m not incapable of independent living and manage my disabilities well. And let’s be real—the cost of trying to force me into a care facility when I don’t need one (but others probably do) wouldn’t be worth it to the council. Lol.

So, I know I’ll be going home soon.

But that anxiety is still there. That fear. Because as a disabled and vulnerable person, you never know when your next human rights violation will happen—you just know there will be more at some point, and you must prepare accordingly.

One of so many things disabled people face regularly—especially those whose disabilities are "rare" mental health diagnoses or poorly understood invisible chronic illnesses. It’s exhausting, always having to defend and advocate for yourself.

And embarrassing—I had to email my GP, explain the situation, and ask for more pain meds because I know this stress—while still not recovered from the fibro flare brought on by illness last week—will likely worsen or prolong my flare.

Every day with disabilities is a constant juggling act—maintaining current symptoms, preparing for future symptoms, and cleaning up from past symptoms. It’s exhausting and never-ending.

This week, I’ve set aside for resting, but next week, I have some workshops and community groups to attend—if I can.

Isolation is the worst thing for mental health when unwell, but with the costs of buses, food, and bills these days—who can afford to go out often anyway?