I’ve been doing some thinking. After watching the speech by Tim Farron at the the Lib Dem Conference yesterday, what do I actually want from my politicians? As a severely disabled person what would I like to see the Government doing to make life better for me? What would make me feel that waking up every morning and greeting the new day with a smile was a good idea? What promises would I like to see made in all the different party manifestos?
This list is long and complex but, as far as I am concerned, the main issues I’d like to see tackled, as soon as possible, are to do with money, housing, care and employment although not necessarily in that order.
However I look at it, money, for me, is the main issue. Like many people, I don’t have enough of it. Unlike many people, however, there’s not a lot I can do to improve the situation. As someone who is too disabled to get out of bed and leave my home most of the time, I am reliant on the money I receive from social security to live. Thanks to all the cuts that have been taking place in the name of austerity, this is now precious little. Barely sufficient for even the most basic existence, certainly nothing for any form of luxury. And I don’t think it’s fair. It’s not my fault I got sick and can no longer work, however much I want to. I didn’t choose this way of life. So why am I, like so many others, being punished for something that’s not my fault? Why is the amount of money I receive going down all the time? When I was still able to work I paid my National Insurance every month with the expectation of being protected if times got rough. I thought that was how insurance worked. Obviously not. Whatever I was paying for it wasn’t for my own future security. What I’d like to see in party manifestos would be a commitment to ensure that people who are unable to work due to disabilities that are not their fault receive a slightly more realistic amount to live on.
Number two on my list is housing. I am lucky – I live in a properly adapted, social housing home. I’m comfortable and able to do pretty much what I want. But not every disabled person is as lucky as me. And that needs to change. My property was adapted using a Disabled Facilities Grant and this needs to be the case for so many more people. Making sure more properties are suitable for disabled people has got to be an investment in the future for social housing. But my experience of the application process for the grant was nightmarish. Massively long forms, complicated questions, endless requests for more information about my own personal financial circumstances. From when we first applied for a grant to when we actually got to move in it all took a couple of years. Not good enough. And this is why I would like to see housing mentioned in party manifestos. I want to see Politicians pledging to make it easier to get a grant to adapt a property to cater for a disabled person’s need. Not only that but I would like to see legislation enacted to ensure that all new build social housing projects have a respectable number of properties that are suitable for all disabled people included in the plans.
Next on my list is care. I have experienced both family care and social services care and there are issues that need to be addressed with both. Firstly, family care. Why are family members almost expected to give up on their own lives in order to care for a disabled child, parent, sibling, grandparent? Why are they expected to do this for almost no pay whatsoever? Family members are saving this country so much money by looking after their relatives themselves and yet they are receiving almost nothing for performing this service. Carers Allowance is pitiful. Support is negligible. Why?
And then there is social services care. Care packages are so restrictive. Having a Social Services carer who can actually do what you want them to do is really hard. What I need is to have a carer who can do the things I would have done had I not been disabled. What I need is a carer who can not only cater for my personal care but who can do things like hang up the family washing, put stuff in the dishwasher and set it off, do the hovering and dusting, nip down to the shop for a pint of milk when I run out. I want more control over my own life.
I would like to see a manifesto pledge from all parties to ensure that social services care is reinvented to cater more for the actual needs of the clients it serves rather than the perceived needs.
The last thing on my list is employment. I would like to see more help for disabled people who want to work and for the businesses that would like to employ us. I want to see some more innovative thinking on the part of Governments on how to make things easier for any disabled person who wants to have a job. Instead of just cutting social security payments and telling us in a patronising and paternalistic way that work is the way to go, why not do something constructive to help. Why not encourage employers to adapt premises and business practices to make them more accessible for disabled people. Why not set up some agencies to help disabled people find suitable work. Why not promote more homeworking opportunities for disabled people who are quite capable of doing something but who can’t manage to leave their home due to their impairment. We have phones, computers, access to the internet, Skype and so much more. Why aren’t their more job opportunities that use these advantages for people who want to work from home? We live in a technological age, why not use technology to help disabled people who want to help themselves.
There is so much more that needs doing but these are quite enough to start with. It’s not hard really. I’d like to see politicians start asking disabled people what they want from government. I’d like to see an end to the paternalistic guesswork that has been the norm for so many years. When you are writing your manifestos, why not ask us what we want? There are so many of us who would like to tell you. Try it, you mlight be surprised.