Independence: expensive equipment or human assistance?

I have always preferred technology over assistance. If there is a way to carry out a task independently, I would choose to do so rather than requiring the assistance of another person. I think that’s quite a universal preference. It’s usually a more complicated and costly route and so not always the one supported or possible.

It takes time to access appropriate support. I am now in a situation where I have a medical team looking after my treatment and health and a support team to assist in the aspects of daily living. I live in sheltered accommodation that is as accessible as council housing gets, have a manual wheelchair with an indoor electric on the way and various small and larger adaptations have been made / are being made to help me be as independent as possible. It’s the little things that make the difference. I love my electric riser chair which enables me to get up unassisted most of the time and are keen on exploring the possibility of obtaining funding eventually for a similar riser for the bed. We’re constantly on the lookout for new gadgets, like water bottles I can lift and open and I’m enjoying the successful ones we have obtained so far, cool cutlery, a space-style plate, a two-handed, lightweight tea mug. Some work and some do not. I have tried a great variety of knifes and none have made slicing food any easier and sponges and hair brushes are difficult to hold without constantly dropping it. Sometimes there just isn’t a way around the issues.

I am still struggling to adapt to having a personal assistant around the house. I’m sure part of it is finding the right person who will fit into my lifestyle and stick around for long enough to learn how to deal with all the quirks of my condition, but some of it is just struggling with the concept of having to ask someone else to do something as basic as open a can for me or make a phone call. I’m not sure it’s something I’ll ever really get used to. That said, it’s a vast improvement over not being able to use or access so many things. There are barriers and not all can be overcome by using a special piece of kit or throwing money at it, sometimes you need a human interface. And that option isn’t always available either.

I’ve been keeping an eye on all the talk surrounding benefits and how the proposed government cuts will be affecting people with disabilities. The general trend tend to be that of people feeling scared and insecure, left to wonder whether they’ll be able to pay their bills in a year, still have a roof over their head and able to retain access to the things that make life more accessible that they have fought long and hard to obtain. I understand the sentiment. I remember what its like to not be able to work or work full-time, to loose a job or have to quit a job for health reasons, the stress and worry of not knowing that benefits were available and taking out loans to cover basic living costs and then when finally discovering them, realizing that our household income is too high to qualify for most and then being denied twice the only benefit I was entitled to.

I remember the struggle of dealing with health professionals that were ignorant, social services that were unsupportive or just absent and the nightmare of negotiating through the quigmire of a fractured system that seemed to be trying to make life as difficult as possible. Things have changed for me. Chris no longer needs to work 80+ hour weeks to pay our rent, we no longer have to turn off the central heating in all but one room to afford our winter bill and we’re no longer relying on me getting better again; bringing in that pay check that will make everything all right. We’ve made some gross errors in our twenties and carry part of the blame for the situations we have found ourselves in, but we’ve also been let down by a system that was suppose to help us cope. We’ve improved since then. We know what we’re entitled to and we actively work on getting life as accessible and comfortable for me as is possible. I’ve been approved for an electric wheelchair, the council bungalow is slowly taking shape with rails and risers added and ramps being made. I finally have a new social worker that will be stopping by tomorrow, it all looks positive that I will be able to increase my direct payment allowance to afford more and potentially better trained staff to help out and being six days away from a full-term pregnancy, the changes couldn’t be more handy. I wish I didn’t need all the things that I do or all the help and assistance that I do, but realizing and accepting it as fact rather than trying to make do with less or without, is a much healthier approach.

I will always keep pushing towards equipment rather than man hours. I’m waiting for a phone that just maybe will make it possible to use the phone more often; I am giddy at the thought of an electric wheelchair rather than requiring someone to push me around and combined with the new toilet seat riser and rails I will be able to use the bathroom in the middle of the night without assistance and without injury for the first time in years. Not having either is the worst case scenario, but having equipment that enables some independence rather than complete reliance on someone else to assist with daily tasks, is most definitely the best case scenario.


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