OT’s in their own words - the horror of being just a number
The following are genuine discussions I’ve had with Occupational Therapists (either on the NHS or social services). They’ve been here a few times, first for my mother, then for me when my mum had died. I always found them very poor and very patronising, and really only had one good experience with a lady who was only passing on her way to higher education. The lady who dealt with hearing related aids was also alright though the process took a long time. One of the worst experiences looks benign on the surface yet when you see what they are actually suggesting, it looks incredibly patronising and ableist. The British do tend to be patronising but whether or not it’s a national trait, is hard to tell. Maybe I’m just older and more decrepit so I get treated differently now.
My bath tub rusted and the reason is probably the bath board, since water keeps seeping through and running down the side of the tub, though I was told by the housing association contractors it must be the fact that I have kept the shower curtain outside the bath tub. I refuse to keep the curtain on the inside as it would get mouldy and it’s completely against my Finnish sensibilities. I come from an ultra pragmatic country and find it difficult to adapt to the every day reality of Victorian Britain.
So… there seems to be a bit of a culture clash involved in this problem but mostly it’s really just a very stiff system that doesn’t leave any space for complex health problems and individual disability related needs. Anyhow, the tub was replaced with one that has extremely curbed sides so I can’t stand safely or comfortably in it. The flat area is only 33 cm wide. I have knock knees and a wonky skeleton on the whole, as well as painful feet due to several bunion and bunionette surgeries.
The new taps are too short so you can’t fill any bucket or basin from those taps. I need this feature because I have to wash clothes and other things by hand sometimes, and I also have to do some light cleaning sometimes that my cleaner doesn’t get around to dealing with. My housing association demanded an OT assessment. The first OT who came to assess the bath tub wrote a recommendation, and she also had a look at the high threshold to my garden. At the moment, I’m having trouble moving water from the shower room to the garden for my plants. I also felt that I was being looked at for my mobility problems but fatigue and other concerns such as extreme sound sensitivity did not enter the picture at all. I was explaining myself but didn’t feel listened to (and this was true when I had a full assessment last summer as well). The health practitioners I have met in the past few years have mostly stuck to a very narrow script that has not helped me and has often harmed me.
Then some guy from the council who needed to approve of her assessment felt unsure, even though I offered a sensible bath tub solution myself. I even said I could fund some of the make over myself. In his view, the problem is that I have a shower room downstairs and so he made all sorts of excuses not to recommend a new bath tub for me (in a nice warm bathroom next to my bedroom upstairs). I then had to wait a few months for them to come and see me together. Many of the coercive and patronising comments below came from that visit. They smiled and pretended to be on my side but their words did not align with that idea. They said a lot of things I couldn't make out but I got the important bits. Their visit exhausted me to no end and left me with sensitised tinnitus. But I also feel mentally unwell because I was subtly erased and made to feel like I’m just being difficult. I have told the maintenance officer that I can’t accept this kind of treatment.
Them vs me (mostly) thinking:
OT: We can’t provide a bath board because your mother can just go downstairs to the shower room.
Me: My mum is under palliative care dying from cancer!! (This was obviously long ago and they backed down eventually.)
—
OT: We would not be able to offer any option for a wheel chair friendly threshold to the patio because the front door is accessible. You would have to go round…
Me: I would have to wheel outside in a public space in the morning, through the car park, through the gate, through the alley, turn through the longer alley, and then try and squeeze into my garden past all the pots and plants… to reach my patio door. Well thank god I don’t need a wheel chair yet then!
—
OT: We can’t recommend a change of bath tub to your landlord even if you can’t stand safely in it because of the curbed sides, because you have a shower room downstairs.
Me: You’re genuinely suggesting a person with disabilities that they should trail up and down the stairs on unsafe subluxing knees several times a day to a cold shower room that doesn’t drain water properly so the water pools behind the toilet and needs extensive mopping, and get really cold in the process because I can’t heat the downstairs when I’m not spending time there… and by the way, the fan is very noisy.
—
OT: Do you really need to stand up in the shower? What if you avoid it?
Me: Uhm… do I really have to explain how I wash myself???
—
OT: The housing association will think that sooner or later you will need a stair lift anyway so they don’t have to change the bath tub because you can just use the downstairs shower.
Me: It could be ten years down the line!! Just because I can still use the stairs doesn’t mean it’s safe for me to do it repeatedly.
—
OT: The upstairs is a bathroom and the downstairs shower is a wet room.
Me: No, they are the same. They have dry walls with tiling only around the shower area and the shower room is not fully water proofed. AND the water doesn’t drain because it’s poorly built! (Now screaming, in my head, please everyone stop calling it a wet room!!!)
—
OT: Normal people wouldn’t use the shower taps for filling buckets or basins with water so we can’t recommend that the taps should be changed for longer ones.
Me: So how do normal people wash anything upstairs?
—
OT: Have you thought about washing your woollies in the kitchen sink?
Me: What?? A tiny sink where there has been FOOD???
__
OT: You’d be better off just buying normal trousers with a drawstring, instead of ones you have to pull up like that [we’re talking about yoga pants that are hard for me to pull up].
Me: Uh, you’re assuming I haven’t tried to find the best and most comfortable house trousers for myself? Ones that don’t go all the way up to my breasts like most of them do, or cut into my sore tummy, or use synthetic fabric? I paid £50 for this pair that’s actually comfortable to use at home [rolling my eyes].
—
OT: We can’t really suggest anything to your landlord because it will never meet with your needs.
Me: Eh? I need to be able to stand astride in the bath tub in a safe way which I can’t right now because they put in a new tub with curbed edges, and have longer taps for filling buckets with water, those are priorities. The rest is negotiable. I’m willing to pay out of pocket ffs!
—
OT: The shower curtain is meant to hang on the inside of the bath tub. We can’t recommend a shower screen because your bath board is in the way.
Me: So how do you dry it so it doesn’t get mouldy? I’m willing to pay for a seat that can be fixed to the wall! I can keep the bath board at the other end!
—
OT: You can use a water butt to water your garden.
Me: Yeah… the water in the butt lasts about one day. During a heatwave, I have to wheel it from the shower room.
—
OT: Could you just try and use the shower room anyway?
Me: NO.
—
OT: Has the landlord offered you more suitable accommodation, like a bungalow (for the 2nd or 3rd time)
Me: Stop patronising me. This is my home. Do you have any idea how expensive and exhausting it is to move houses, and how much I have invested in this house, and how unwilling I am to take any chances with a new house, how much I need my garden, and how unwilling I am to sleep on the ground floor??
—
OT: I can see that you’re lip reading.
Me: No I’m not.
__
OT: Here’s a calming exercise for you. Think of a colour, then the word tranquillity.
Me: That’s it? Yeah apparently that’s it!*
😱
* I had a look online and apparently the exercise she’s trying to emulate involves breathing and body scanning, it’s simple but definitely not this simple. Pathetic.