After my internal expedition in my wheelchair, I was left with much to think about and even more to do. There are more problems than I expected and I know without a doubt, many of them will appear petty and even silly, but as I have said before, if you don’t get things right, they will pull you down and down. I am not prepared to just sit back and let that happen. It appears though that I am the only person on this planet not prepared to land up being reduced to a baby, just because my body is failing.
Just after I had put my wheelchair back in the cupboard, I sat here and started searching online for those essential items for transporting food and drink from the kitchen to here. It didn’t matter what site I entered the solution to an adult not being able to carry a crystal glass from one room to another, is nasty looking capped plastic mugs that I personally wouldn’t actually be happy giving to a baby to drink from. I remembered when Teressa was tiny that I had the same problem back then. She did have a sipper cup for a few months, but I as soon as I found a lidded beaker that meant she was drinking in the way anyone would from a glass, the sipper cup was thrown out. To me as an adult, I don’t see why I should either want or accept to being forced to use items that would reduce me to an even lower level. I have always had this nightmare image of being in hospital with someone trying to get me to eat some kind of mush of a plastic plate with a plastic spoon, then trying to get me to drink out of one of those cups. Be warned world, I’ll starve and die of dehydration before I let either happen.
When I was building my cocoon, one of the things I did was to fill our kitchen cupboards with the best china and crystal I could afford and in volumes that most people wouldn’t even consider. Right now if I had a table big enough, I could set places for 24 people, for at least a three-course meal, including all china, cutlery, water & wine glasses without having any gaps. I didn’t buy it as I intended to do a lot of entertaining, I did it so that we could eat off and drink from quality items. Items that all matched, looked good and would last us both through the entirety of both our lives, a possible 60 years or more, without having to buy anything. Things do get broken, so if I worked it out right, when Adam is in his 80’s, he should still be about to set that same table for at the very least four, if not eight. That way the dishwasher won’t be on all the time. Having said all that, I don’t intend to be the person who manages to break the most of it. I am going to have to find a system that means I can still enjoy and use what I bought, even when Adam isn’t here to carry it around. I have worked out that what I need is a ferry system. A soft bag to place on my lap that I can connect to the chair so it doesn’t slip then I can take the dishes, plus a lidded container for transporting even hot food in safety. For liquids, well I need some sort of bottle, that I can decant from the large bottles in the fridge to refill my glass in the living room. All of which I have to find and buy, and yes, they will all have to look good.
Why does it appear that just because you are disabled and fading, that we aren’t allowed to have taste and dignity? I may turn into a dribbling wreck, but I will still be a person with taste and style. Yet it appears that practicalities are the only consideration, the word “design” is only there in its loosest form. It can’t be that hard to make a glass with a lid that is actually made of glass or better still crystal. The world doesn’t have to be moulded out of the cheapest and nastiest plastic that’s available. If I am unable to hold a glass, then yes I will have to use a mug. I have without difficulty found a crystal mug, they are out there, but one with a lid? Of course not. There is some weird assumption that the fact you can’t hold a glass means that you will drop a mug, so it has to be unbreakable. I fully understand the two handles, that makes sense, but if I am able to hold two handles, I am most likely to be able to not let go with two hands at exactly the same moment. The unbreakable part doesn’t compute. I have already dropped my crystal glasses on odd occasions, oddly enough because I live in a normal home, the distance between me sitting on a chair and the next surface isn’t enough to break even crystal. That next surface is also most likely going to be soft. As in me, cushions, mattress or carpet, not concrete or stone. Believe it or not, glass normally bounces. I can see that plastic might have the weight advantage over crystal, but not over normal fine china or glass, so that doesn’t compute either. Finally, if I am not able to hold a mug, then someone else will be holding it for me so every argument they might raise, has gone. The issue of the sipper cup is just an example, but one that I have blown apart, just as I can with almost everything else I have also seen under the heading of aids.
Look at everything that is made for the disabled and the word stylish, elegant or beautiful can’t be attached to any of it. Why is that? I’ll tell you why, firstly we clearly aren’t a big enough marketplace to make it matter. Secondly, it is the outdated perception that the disabled are incapable of thought and don’t actually matter. Pat them on the head and tell them it was made especially for them and they will be happy and if their not, well they should be. Well we aren’t. Annoyingly I have come face to face with that attitude first when I was working and even worse, from people within the NHS. I know that I’m not alone as one of the things that my searches turned up were blogs, blogs from people just like me, have had enough of been treated like brainless tenth class citizens. There are a few companies and they are a very few, that are trying. Unfortunately, they are trying for the younger element amongst us, sorry but I have no desire to be using anything that has fluorescent colours on them. I can see those aged up to their mid to late twenties really loving them and those in their thirties and early forties saying they do, just because they don’t want to appear stuffy, but the rest of us, I am sure the numbers dwindle rapidly. All I am asking for is simple elegant design, items that wouldn’t appear as totally out of place in my home or any other “normal” home. Why can’t they make grab bars that aren’t thick clumsy white plastic coated monstrosities, elegant and fluid sinuously shaped chrome would do exactly the same job, but with style. Is that really too much to ask for? Chronic illness and disability may make us feel as though we have somehow become aliens on an alien planet, but personally I don’t want to look or live like one.
I remember touching on this briefly twice a couple of years ago when my new perching stool arrived. It’s standard NHS, white frame with a brown plastic seat, clumpy and unbelievably ugly. As ugly as all the other things that the OT’s have tried to force onto me over the years, including their so called “flesh coloured” braces. I admit my life might have been made easier if I had accepted all they offered, but the damage it would have done to my emotional well-being would have more than undone any good. I haven’t given up on finding what I am looking for, but, and this is a big but, it is going to have to be done in small sections. Yesterday, I found myself becoming more and more frustrated by what I was looking at. From what should have been simple aids, right through to the most major one like hoists and all other equipment that would require adaptations, all of it was ugly and so unnecessarily. I found myself getting more and more frustrated and wound up by it. I even screamed at the PC at one point as I couldn’t believe what the outside world was trying to force onto me. I spend my life trying to stay calm and placid, this entire process is anything but.
Clearly I am going to have to break it all down, starting with exactly what needs to be done to make it possible to use my wheelchair here in the flat. I don’t know exactly how long I have until my legs won’t want to carry me around at all, what I do know is I have to get this done before I’m stuck in my chair struggling.