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Wheelchairs

OK Theresa and Jeremy and Tim and Nicola and Leanne and all the other pavement walking, door knocking, Manifesto-pledging Parliamentary candidates currently pounding our Nations’ streets, I have some questions for you. And, as a disabled person, I’m pretty sure there are many others from my community who have questions for you too. Why are you not speaking to us? Don’t we count? Don’t our votes matter to you? I hope not.

What I want to know, exactly, is what the political big-wigs and hard-hitters and movers and shakers in this country can offer to us? What promises can you give to all of us. What promises or pledges will you make to us? According to all the statistics I have been able to find, there are around 12-13 million disabled people in this country, what are you going to do to our lives any better for us? Are you totally disregarding the collective power and magnitude of disabled people’s votes and the votes of our families and friends? I hope not. Do you really think you can continue to either demonise us or watch others doing the demonising without us noticing? I hope not. Are you going to continue putting our needs to the back of the queue? I hope not. Are you going to go on ignoring us? I hope not.

Well, here are my questions at any rate.

We are told that Social care in this country is in crisis. That there is not enough money to pay home-carers and unpaid carers a decent wage or benefit that reflects what they do to support and enable us. What are you going to do about it? We are the net users of that care, what are you planning on doing to alleviate the situation and ensure that we get the care we want and need to allow us to live our lives to the full?

What are you going to do?

Many of us need to use aids and adaptations in our daily lives such as hoists and wheelchairs and hearing aids and aids for people with visual impairments. What are you going to do so that we can all get the best equipment we need to live without having to fight for every nut, bolt, screw, , plug, cable and electronic component?

What are you going to do?

Then there is the constant battle to find a home, a place to live which can cater for our access needs and accommodate us properly and in comfort. It’s often one of the greatest obstacles we face but one where we appear to get little or no help in getting what we need. What are you going to do to ensure that there are houses and flats and bungalows available which allow us to live in the community with our families, alongside our friends and neighbours without having to fight for funding for alterations and adaptations?

What are you going to do?

How are you proposing that your party will ensure that disabled children and young people can receive the education they need and deserve alongside their non-disabled compatriots? How are you going to try to ensure that they can all study together and not be segregated due to an impairment meaning the school or college is physically inaccessible for all?

What are you going to do?

Everyone falls sick at some point in their lifetime, what are you going to do to ensure that everyone can access the healthcare we all need and not find it being rationed according to how much we need it and how expensive it is? How are you going to give us access to the doctors and specialists and the nursing professionals we need in our hospitals? Are you going to ensure that these professionals receive salaries that reflect their skills and dedication? Are you going to make sure that they have working conditions such as hours and breaks that allow them to do their jobs to the best of their ability and not want to leave?

What are you going to do.

Then there the employment thing. We are told that everyone must work and get a job. What are you going to do to ensure that disabled people who can work get the support they need to do so safely and successfully and that those that can’t work due to their impairments are not demonised and punished for daring to be sick and disabled. Many of us would like to have the opportunity to do something, however small, what are you going to do to help us? How are you going to promote disability in the workplace so that those of us who can work and want to work get the support we need and the opportunity to do so?

What are you going to do?

Talk to us and tell us how you are going to help and support us. Why should we vote for you and your party as opposed to the other parties and their candidates? What are you going to do that will make a difference for us? Don’t write off 13 million potential voters. Please talk to us and tell us what you’re going to do to help us. If you want my vote give me a reason to put my cross next to your name on the ballot paper. What difference are you going to make to my life? Why should I vote for you, please tell me.

What are you going to do?

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I am angry. I am very angry. I need to get confirmation of what I have just been told but, if it really is the case, then I am very angry indeed.

To cut a long story short, last year, my local authority, Lambeth, decided in it’s infinite wisdom, that it would close my local library, the Carnegie, in Herne Hill, SE London, in order to convert the basement into a gym and have a much reduced library on the ground floor, with no professional library staff available or, at least, only available for a short period every week. On February 8th the Council, in it’s infinite wisdom, approved the plans, which will now be implemented.

As a wheelchair user, access was never amazing but, by dint of ringing a bell at the bottom of the steps to the main entrance, at least a member of the library staff would come out, help you through a side entrance to a lift in the basement and up to the main library area. Not ideal but at it worked. I have just asked what will happen when the basement is converted into a gym. Would we still be able to access the lift. I have been told that wheelchair access will, in future, be via a ‘circuitous stairway route’!

Well friends, what part of ‘stairway’ and ‘wheelchair’ won’t work do we think?

Could it be that, as I am not a dalek with an amazing ability to levitate, I, and other disabled and older people with mobility issues, will NOT BE ABLE TO GET IN AT ALL?

Discrimination anyone?

Of course, I am fully aware of the fact that there are other options available to me, such as a home library service where someone brings my choice of books to me but, and in my opinion, its not the same thing. Whilst, of course, a home delivery scheme has it’s merits for a lot of people, it’s not, in my opinion, the same thing at all.

Half of the fun of going to the library is having the ability to browse the shelves and find new books and authors you never knew about. There is nothing like pulling a book off the shelf, purely because it has an engaging title, reading the blurb on the back and the author’s biog on one of the inner flaps and thinking ‘This looks interesting, maybe I’ll give it a try.’ I really cannot count the number of times, over the years, that this has happened to me. Many of those books now rank amongst my favourite reads of all time and without the ability to browse the library shelves I might never have found them.  

Then there’s another important issue that also needs thinking about, apart from he issue of access for disabled people.

There are already three gyms, with swimming pools, in the immediate area as well as a large park over the road and another, even larger park, fifteen minutes walk away in the centre of Herne Hill itself. Why, exactly, do we need another gym? Has anyone ever given any of us an answer to that? Not only that but, as far as I am aware, Lambeth has not done any form of impact assessment for the people living in the streets surrounding the library building. The library is in a residential area, with two busy primary schools in the immediate vicinity, and the majority of the streets surrounding the building are Controlled Parking Zones with daytime parking restrictions because of those schools. In the evenings these same streets are where residents park their cars after work, outside their own homes. There is no space for gym users to use. There are no car parks nearby and no room for one to be built. So where would Lambeth Council suggest that gym users should park their cars? Any ideas?

And then there is the noise issue. As I have already said, the library building, where the gym will be, is in a residential area where families with young children and older people live. It is a quiet area. The people who live nearby are not going to welcome any disturbance and disruption in the evening caused by the noise made by gym users leaving the building, getting into their cars and driving away after their fitness sessions.   

It is very clear that this plan has still not been properly thought through and that, yet again, Lambeth have jumped in, feet first, without considering the cost and the consequences for local residents.

Let me reiterate. We do not need another gym. You can keep it. We do not need gym users causing noise and disruption. You can keep them too. What we need is our library. We want to keep that. A gym will only make things worse for Council Tax payers and residents in the area. Please Lambeth Council, give us back our much loved and much used library and stop trying to make a fast buck on the side. If you ignore us and our wishes, let me tell you, when the next Council elections come round, we will not forget and we will not forgive.   

So. Today is voting day for the Referendum which means I have had to get up. I don’t do getting up every day but today is too important not to so I am now sitting in my wheelchair and I’m not entirely happy about it.

For those of you that don’t know me or my situation, let me explain.

I should start by saying that, for me, the wheelchair scenario is nothing new. I have been a full-time wheelchair user for nearly twenty years now so you’d think I should be used to it by now, and in most ways, I guess I am. But, over the past two years, things have changed dramatically. My impairment has deteriorated markedly and, because of this, I now spend most of my time in a hospital type bed in my living room. I get up a mere three or four times in a month to go out but bed is where you will normally find me. I would love to be able to get up more often, most of the time if I’m honest, but, thanks to my rotten, horrible, massively uncomfortable NHS wheelchair, I can’t.

Before things deteriorated I used to be pretty active. Not a bouncey, run-around, exercisey sort of active lifestyle of course, my MS didn’t let me do that, but a busy, non stop, very fulfilling, sort of active lifestyle nonetheless. What you would expect for a woman in their late forties, early fifties to be honest. I worked full time, went out with my friends a lot, traipsed off into town on shopping trips when I felt like it, went to the pictures and the theatre with my family occasionally, had fun, had a life. And to enable this life to happen, I had a pretty decent wheelchair which I obtained through a scheme called Access to Work. This is a Government funded scheme which allows disabled people to obtain the help and equipment they need to get on a level playing field with their non-disabled colleagues. My wheelchair didn’t do everything of course but it did all the things I needed it to do to allow me be comfortable and busy at the same time. I could recline the back, raise and lower my feet at the touch of a button, tilt the whole chair so I could relax when I wanted to and it had enough battery power to allow me to go where I wanted, when I wanted without the risk of grinding to an undignified halt. When I became too sick to work any more I had owned it for around five years and I had also owned a similar chair for about five years before that so I was used to it and what it did. There was one other thing I loved about it – it was easy to drive and so was so maneuverable that I could get on and off buses, or into cabs if I wanted to, without a problem. I was used to it, I loved it and I was happy and comfortable with the freedom it gave me. It was an integral part of me. But it was old and clunky and squeaky and bits were falling off it. It wa coming to the end of it’s active life and it needed to be replaced. That would have been fine if I had still been in work, I could have just got another chair through Access to Work, but I’d had to give up work when I got sicker so I was no longer eligible and I couldn’t afford to buy one privately. Decent wheelchairs are far too expensive. I now have to rely on the good old NHS for my equipment.

I fully understand that the NHS is publicly funded and so has to show it is value for money and not frittering public money away but does that have to mean that, whilst the equipment it provides for disabled people is functional, it is not what that disabled person really needs. It may have to be as inexpensive as possible, but that does not necessarily mean it is entirely fit for purpose. The cheapest option is not always the best, the most efficient or the most cost effective. Having a wheelchair that gets me around but which causes extreme discomfort and pain is not a great idea really. It means that I am more likely to need to see my GP o the District Nurse more often, that I need to have home care workers and support staff attend in my home more often and that I am reliant on other people for almost everything I want. And that has a cost too. With this, cheaper chair I am not getting to go out and about  as much as I once did. I’m not not able to volunteer at my local disability organisation any more, I’m not able to use local facilities like the library or neighbourhood shops as much as I once did. My quality of life has diminished. I can’t go to the doctor on my own or pick up prescriptions from the chemist if I need to, they have to come to me. I’m not able to even think about getting a part-time job to boost my meagre income and pay my taxes. I have become a drain on the system, I am unable to contribute.

Why can’t things be looked at in the round and not separately through their individual elements? Why can’t cause and effect be taken into account? Why is money and cost always the primary concern when looking at the needs of disabled people rather than what might be the most beneficial and cater for that person’s needs the best? Surely spending a little bit more now, if that would mean spending a lot less later would be more sensible. Maybe one day I will be able to have a wheelchair which will take into account all my needs rather than just giving me the one that is the least expensive. I want something that will allow me to be the real me again not just a shadow of the me I used to be because it’s cheaper. We only have one chance at life so give me, and all the other disabled people in the country having to use the cheapest option available, the tools we need to take that chance rather than always looking for a way to pennypinch and cut corners. The cheapest option is not always the best option and short-term pain will not always lead to long term gain. We all should have the right to live and not just exist and I would like to have the chance to have that right too.