In which I get a stairlift and while it’s better than having no stairlift it isn’t ideal and is a good reminder of how disabled people are so often forced to accept second best.
This stairlift has turned into rather a saga. First the delivery lorry broke down and the provider decided it was reasonable for them to bump us back to the end of the queue; luckily the local council (who are the ones paying them and therefore have far more clout than the actual customer) made them fit it as soon as possible.
It arrived last week and after a couple of tries it became clear that there were several problems. For one thing, the engineer had fitted the seat too high, meaning that supporting myself safely on the stairlift was very hard work as I had hardly any support to stay in the seat. For another, the arms were incredibly stiff and I couldn’t raise or lower them myself, even using both hands.
The issue of the arms was the greatest blow because it meant I wouldn’t be able to use the stairlift independently, something it hadn’t occurred to me to doubt. They have to be folded up between uses or they block the stairs, and I was so upset to realise I’d have to ask Mum to help me every time I wanted to use it. Most likely she’d be around anyway, but it’s not the same thing.
Both these issues have been fixed. An engineer lowered the seat and loosened the arms; they’re a tad stiff still but I’m able to operate them myself (if they’re too loose they’ll just drop down again). He also fixed a rather serious fault, which was that the stairlift was stopping and showing a blockage error before reaching the top of the stairs. There was no blockage and it made the stairlift unsafe to use since I had to slide off it onto the stairs and then, of course, climb to the top.
I’m glad to have these things altered, but sadly other problems have been less easily solved.
The stairlift is still difficult to sit on. Being able to have my feet flat on the footplate helps me support myself, but it isn’t everything. There’s a seatbelt which made it much easier when the engineer fitted it, because it simply holds me on the seat. I can’t use it on my own though. You have to pull it out to arm’s length in front of you or else it locks and, like all seatbelts, it’s sprung so it’s pulling back as I’m trying to pull it out. The further my hand is from my body, the more strength I need to put in to keep pulling it. It’s just too hard for me to use.
The seat is flattish but it curves down at the front and is made of slippery plastic. This means I’m constantly slipping forward on the seat and as I can’t use the seatbelt I’m still using my leg and bum muscles to make sure I stay in place. The fact that my feet now sit flat definitely helps as I have a steadier base to push on, but it’s still hard work. We’re planning to get a non-slip mat to put on the seat, and I’ve also wondered whether we might be able to do something with the seatbelt to stop it pulling back in.
But really, am I so unreasonable in having expected to be able to sit in my stairlift easily? I don’t think so. Not to mention the fact that from the manufacturer’s point of view I’ll never be able to use it safely because I’m unable to use the seatbelt – and if I had an accident I’d be blamed for it because I won’t have been using the seatbelt.
The second remaining problem is that the controls are hard to use. While sitting on the stairlift, there’s a paddle on the end of one arm – the positioning means I can’t use it by simply leaning on it, I have to grip it. Unfortunately it’s slightly sprung, meaning there’s a constant pressure pushing back against my grip. The upshot of this is that as well as the muscular energy required to grip the paddle I also have to concentrate hard in order to keep the grip going for the full minute it takes to ascend or descend the stairs. My concentration is poor and a very slight loosening of grip causes the stairlift to stop. When you grip the paddle again, there’s a three second delay before the stairlift begins to move again. This means that if I lose concentration twice in one trip, I have to grip for an extra 10% longer. Not ideal.
The second control is a remote allowing you to send the stairlift to wherever you need it. You have to hold down a button for the entire time the stairlift is moving, which causes similar problems with grip and maintaining it. The thing is that if you’re able-bodied you probably won’t even notice the tiny amount of energy it takes you to perform these activities. But as a sufferer from ME/CFS my energy is severely limited, my muscles are very weak, and my concentration is badly impaired. All these things impact on my ability to operate the stairlift.
Thirdly, the stairlift is surprisingly hard to get onto when at the bottom of the stairs. It’s raised high so as to clear the stairs as it goes up, but according to the instructions you’re supposed to just hop into the seat – and then raise your legs up in front of you so that the footplate doesn’t hit your legs as it’s lowered! Once we managed to convince the engineer that this wasn’t within my capabilities, he conceded that I could lower the footplate first and use it to get into the stairlift. If this is safe and won’t hurt the stairlift, why on earth insist on making people do it the hard way?!
Finally, this contraption is really fucking ugly. Seriously, is there any décor at all that this stairlift will actually look nice with? It’s a vile grubby mustard colour. Plain white would be preferable! But we’ve all known for a long time that it hasn’t really occurred to ableds that disabled people also want their houses to look nice. Not that this is even my house – it’s my mum’s. But she doesn’t get a choice; you have to take what you’re given.
The high level of disappointment I felt when all this became apparent was partly my own fault. Very few things are perfect and I try to manage my expectations so as not to be too upset when the inevitable problems arise. Unfortunately I somehow forgot to switch off my optimism when it came to the stairlift. The problems were a terrible blow and I felt bitterly disappointed that the stairlift wasn’t everything I’d hoped. Having some of the problems mitigated has helped with this but the rest will simply take time.
Having said that, the actual specific issues are not my fault. Ok, I should have expected it not to be pretty. Having an attractive disability aid – that really would be a surprise! But the things that make my stairlift harder to use; those are not on me.
We asked all the right questions and made my needs very clear. “How easy will it be to operate?” we asked. “Will sitting on it take energy?” We explained my impairments in strength and energy. It was not our fault that the representative assumed that because this model worked for most people it would work for me. It was not our fault that despite us repeatedly bringing up our concerns, they failed to take them into account. It was not our fault that despite us bringing up things that would later prove to be problematic, they promised us we didn’t need to worry.
Had they taken a moment to listen to what we said and understand my specific needs, we might have ended up with the same stairlift. We might not. Perhaps they could have given us a model that was easier for me to operate. And if we did get this model, they could have told the truth about what to expect: not perfection, but still a huge improvement on the current situation. Yes, my expectations were super high, but despite my history in that area this was very much not my fault.
I should also like to point out that saying “Yes, but we’ve fitted hundreds of these in this area!” isn’t a particularly helpful response when issues are raised. So what if hundreds of people haven’t had any issues – or haven’t wanted to spend the energy bringing them up and just decided to make the best of what they’ve been given – or have given up on even using the thing because it doesn’t work for them? That does not mean it’s going to work for me, you fuckers! It doesn’t mean you get to ignore me when I tell you what’s wrong with the massive applicance you’ve just installed in my mum’s house.
I’d like to finish off this rather gloomy blog post by saying that having this stairlift is still much better than not having one. Instead of climbing the stairs slowly and painfully, often on all fours, I can glide noisily up them. Yes, exertion is required, but much less than usual. It will mean I can sometimes go downstairs to eat dinner, chat with my mum and sister, or sit in the garden. I’ll still have to be careful because going downstairs will take more energy than staying upstairs, but perhaps once every couple of weeks I can lie in the garden for a while, or eat dinner at the table in the kitchen. It will mean I can shower in the more accessible shower downstairs, and that I can spend more time with visitors.
It will increase the size of my life. From three rooms I’ll also have access to the living room, the kitchen, the conservatory and the garden. Only once in a while, but still the possibilities are intoxicating! I just wish the entire experience weren’t tainted by the lack of of understanding and adaptability displayed by social services.