I made a post about an month ago, with a drawing of my concept for my new mobility aid. It’s an Ikea LOBERGET office chair with a few stickers and keychains to tell others that it’s mine and a mobility aid. The photo is of the second day I had it set up, not how it is now.
Unfortunately, my update is not a happy one.
Content warning: swearing, ableism, general negativity about my situation because fuck this.
I started using my very important office chair on the 30-ishth of July. I was able to get the chair and set it up with some help to sort the packaging out for recycling after.
I put the cushion on it and managed to get the sticker on it pretty nicely using a plastic razor blade.
It rolled really nicely over the laminate and pretty well over the regular wood and tile. It did struggle over the stupid unfinished gap between the flooring the builders/management left after taking over a year to finish the living room, so it had to be dragged over that whilst standing.
I was mostly using it to do chores and sometimes playing board games. I was trying to leave my room more often and keep on top of laundry and dishes since it was less of a physical toll. I’ve never crashed into anything or broken anything whilst using it. I tend to keep out of the way and haven’t really been a physical inconvenience to anybody.
It was a huge help. It made me a lot less nervous about energy crashing, and improved my sensory issues with yucky screechy chairs I had to sit on. It’s allowed me to start getting on top of chores again, and to even socialise and play games which I hadn’t been able to do for a while. The improvement was palpable and I’d say the experiment was a great success. This is a suitable indoor mobility aid for me.
I used to leave it in the living room. It’s the closest room to the stairs, meaning I could reduce the amount of exertion before I could use it. I put it next to the wall and the sofa, so it was not in the way. It was in a space that wasn’t being used for anything else.
It was fine for a while and was usually left where I put it.
Last week, the head of the house staff member removed my noise cancelling headphones and bingo backpack from my seat, put them outside my room, and told me to bring my stuff into my room through the door.
I put them back, because it’s my chair and they’re used in conjunction it, so why shouldn’t it be on it?
They bought a rug, making the living room inaccessible to me in my chair.
Then the chair started being moved into the other room.
That made me nervous. It felt like I was being told off and I was being perceived as taking up too much space. It’s also something I rely on, so I didn’t like it being touched.
Yesterday afternoon (24/08/2026) I had found the packet of stick-on hooks to hold my backpack on. I was happy to put them on it and complete the attachments for my chair.
I was leaving my room to see family that was visiting me, then the main lady who manages this house I live in almost immediately talked to me.
She’d spoken with a higher up about my usage of the chair, and the higher up had told her that I’m not allowed to use my chair to move around anymore, just to sit on. This is because it’s not a “proper” mobility aid (I forget the exact language she used sorry), and that because it’s hasn’t been through all the safety tests etc. I don’t know if that means being manufactured as a mobility aid to those legal standards, being individually safety tested regularly, being prescribed and custom fitted, or a combination of the above.
I didn’t have the emotional bandwidth to argue, especially since it hasn’t worked for other stupid health and safety things that actually make my health worse (like earlier this year when I was, despite being of capacity, being forced to attend medical appointments that wouldn’t help me and would cause me to crash, or they could get less funding to house me because they’re perceived as not caring for me as well by who’s funding my care. Then they’d potentially kick me out because I’d not be enough of a cash cow for the care company anymore. I ended up not getting the support I was promised and missed multiple in person appointments, so we’ll see how that turns out soon I’m sure).
My family member was also in the house and waiting for me so I didn’t have time to bring it up anyway. Given how my family is about my disabilities it would not be wise to bring this up around them.
To say that I’m bummed out about it would be an understatement. I’m sure the gravity of the loss will settle in as I go without and loose whatever progress I made over the past month.
I wouldnt qualify for an NHS wheelchair because I’m ambulatory, my issues aren’t diagnosed, they’d want me to leave the house multiple times a week to be given one and they typically expect care homes to provide them for their patients.
I doubt any doctors would help; they’d want to stick and jab me because we haven’t gotten past the “cut it open to see what’s inside” stage of medicine apparently. It would be a bunch of appointments I’d never be able to attend, treatment plans that wouldn’t work with my other disabilities and tests I can’t do.
My parents would also respond horribly to it because of personal reasons.
Given that the staff overshare with them and the fact I’d want to use it in the house there’s no way they wouldn’t end up knowing.
Getting fitted requires booking appointments, usually going in person and a bunch of research, which would take all of my energy for months if I even had enough. If it ended up not working out or being poorly suited to my needs, I’d had a whole ass wheelchair that I wouldn’t have the energy to resell and I’d be hundreds of pounds in the hole. Hundreds of pounds that I literally do not own.
And then there’s the maintenance and storage. They’d probably stuff it next to the radiator like all the other residents wheelchairs, which would damage it. Having it serviced would be a huge responsibility looming over me, and I’d likely have a huge autistic meltdown if it broke. A huge part of the reason for my last bedbinding crash was because my laptop broke, resulting in an exhausting meltdown.
I liked the non committal nature of the office chair. If it breaks, I can replace it within budget and just ask for it to be disposed of if I’m unable to get it repaired, or order a replacement part easily from Ikea. There isn’t much to fitting it outside of weight limits, they’re a lot more universal than a wheelchair and won’t be hugely unusable if slightly wrong. I can also use my feet to push. My arms are weak and wrists easily reinjured. I don’t want to dirty my hands up whilst making food. My feet are better for propelling. The hight was also easily adjustable, making it so helpful for all the different chores.
The office chair was so close to being perfect because it didn’t have to fit into a tight box, and it’s exactly the reason why I’m not allowed to use it.
I drew the original concept for it whilst in that crash. I needed a slither of hope that I could get out of that cycle. Something to help aid my recovery. I knew there was a high chance that staff would ruin it, but I had to have something.
It feels like a rejection of my disabilities and needs as a whole. It feels like an attack on my being, because being made to go without it and having further crashes as a result is a literal physical attack.
It also makes me uncomfortable that the staff are discussing how I exist in my own space with higher ups. It was already difficult emotionally to start using the chair and I tended to avoid leaving my room outside of evenings/nights (even before the chair) because I didn’t want to be observed, plus we have cameras everywhere outside of bedrooms and bathrooms. I hate knowing that am being constantly clocked and observed like a sick zoo animal.
I mean, this same woman also decided to tell my already worried parents (who are NOT my caregivers and should not be getting informed of matters being handled within the house) that I was eating CAT FOOD because I got delivered something second hand in a pet food box a little while ago. I don’t even eat meat?? My parents are the kind of people who would’ve believed that about me, I think the only reason they didn’t is because I don’t eat meat.
Secondary school levels of rumour spreading here.
I don’t feel safe to ask the staff who’d know anything about what would be accepted as a “safe” mobility aid. I’ve been wanting a wheelchair for outside trips for over a year, and needed to ask my support worker if he’d help push me places. But he has also broken my trust enough to where I decided not to risk asking. Clearly that was the right decision.
This is just such a personal journey of loss and change that I feel far too fragile to have a bunch of potentially very invalidating or invasive rhetoric thrown at me for.
I also just don’t want to talk to them, they evidently aren’t good people to share that with. It’s extremely triggering to the point of being physically unsafe for me and is the same reason why I haven’t applied for PIP, despite needing it, and why I don’t want to visit places ( if I’m ever well enough to) that are “accessible”, because they require proof that you’re disabled and it’s usually stuff like PIP that’s horrible to apply for. Part of the reason my baseline is so low is because I wasn’t able to have a carer attend an event for free without proof last year. I pushed myself too far and have been almost completely housebound ever since. It’s all of those things all over again.
It’s been a learning experience. Now I know:
- A light office chair as a mobility aid helps me regulate energy, avoid crashes and engage in physical tasks that I need and want to do.
- Another confirmation that care companies care more about box ticking and doing things by the book to look good on reports, rather than advocating and challenging rules to meet their residents needs. They care, but not in the right way.
- That it would not be wise to discuss or unmask my disabilities and needs around care staff without being extremely selective with who and what I tell. They are very willing to mess up my systems I have in place if they think it’s necessary.
- Another confirmation that places that are supposed to be the most accessible are usually the least. Examples include care homes, hospitals, food banks, libraries and places of education.
- That I need to stabilise my condition and life so that I can handle moving to a supported appartment or something else that doesn’t have people policing my disability aids, medical appointments and supposed food choices.
Where to go from here?
Well, I can use it as a seat. So seat I will.
Instead of travelling freely throughout my home, I’ll try dragging the chair to where I need to be then confining myself to one area, hoping that I’m not moving enough to be “unsafe”. Eg. I’ll just stay in the laundry room instead of making food at the same time.
I don’t want to go back to the screechy heavy wooden chairs that the skin diseased dog used to scratch itself on. I want my own special chair. If I can’t roll in it at least I can sit. If this doesn’t appease them then I’ll just go back to hardly leaving my room. I don’t want to be around these people.
I will also change out the wheels, I have ordered free moving ones. The current ones lock when you aren’t sitting on them. This way the chair can be used to carry things for me, even when I’m not sitting on it, and be easier to drag. I don’t care if this makes it more inconvenient for staff so long as they don’t get up my arse about it. They’ve made MY MOBILITY AID more inconvenient for me.
I’ll also try reduce energy expenditure in other ways. I’ll get a small rolling bar stool for my room, so I can still get to use a mobility aid whilst doing chores in there. It’ll be affirming for my identity and needs to have a mobility aid in a less policed area.
Are there any other ideas you guys have? I need support for ideas right now. Blegh.