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Equipment

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?

I want a job.

I really want a job.

The Government would be so happy if I could come off benefits and get a job.

I would be so happy if I could come off benefits and get  job.

There is only one impediment to this laudable ambition of theirs, and mine – I am severely disabled and stuck in bed most of the time, so, I am not able to go out to work, the work would have to come to me.

And this, apparently, is a major and seemingly insurmountable stumbling block.

But why? What’s the problem? Why can’t the work come to me? In this wonderfully technological day and age, with computers, video conferencing, telephone conferencing, Sype, the internet and even that strange new invention called the telephone, why do I have to go to a specific location, such as an office, city, or even country, in order to work? Is it really necessary for me to leave my home at all?

To be honest, that, as far as I am concerned anyway, is so last century. The experience I have and the roles I am qualified and extremely familiar with in a workplace can easily be done without having to move location at all. I am happy to admit that there are many, many jobs where the employee does have to be in a specific building or town or workplace in order to do what they are trained to do, such as a doctor, a bus driver, a postman, a prison officer, a supermarket cashier, a chef but, equally, there are many, many  roles which can be done from just about anywhere and no-one would know any difference.

Take me, for example. I, like many people, have the transferable skills which would allow me to be able to work, in my chosen profession, from anywhere. I’m not anything special or important or awe-inspiring, I have around twenty-five years experience in providing advice and information, on a variety of subjects, to disabled and older people. I did, or do this, by phone, email or in the form of advice leaflets, information sheets, magazines and current awareness bulletins which I have written, edited and published for national and regional organisations and charities in my area. And that’s it. That’s me. That’s what I do. But for some reason, all the employers who are looking for people who can do what I do, would want me to travel to them to do it.

Why?

In my last paid employment I was taking details of clients’ legal problems and booking them an appointment for a telephone advice session with a lawyer. Either that, or referring them elsewhere that may be more suitable for their needs or sending them an information leaflet that would, hopefully, answer their question. Nothing more complicated than that. So, what was there  which meant I had to travel to the other side of London on a noisy, smelly, crowded bus every day at crack-of-stupid in the morning and then fight my way back home again on the same buses, exhaused and frustrated in the evening? I have no idea. I could have done the exactly the same thing from the comfort of my living room and no-one would have been able to tell unless I felt the need to let them know.

And I’m not just guessing, I know this, from personal experience. At one point during my employment with the company I had to have an operation, which necessitated a lengthy recovery period. Essentially, my brain and abilities were unaffected, I just had to be careful and wait for the wound to heal and for the stitches to be removed. That was it. I wasn’t sick, just incapacitated. So, I had to stay home. And I was so bored and so fed up and I felt so useless. In desperation, I had a chat with my boss and, because he was forward thinking and had also had problems finding someone who could cover for me whilst I recuperated, we implemented a system whereby my office phone was linked to my home phone and the client database and advice rota were linked to my home computer and bingo, I could  continue with my work, uninterrupted. If someone rang in I would take the details of the issue, make notes about their case on our system, check the availability of our legal professionals and book an appointment for the client to get the advice they needed. Not only that, but I was able to undertake research for advice leaflets, write articles for the magazines I was responsible for and send the copy to the printer for publication and distribution. And, I didn’t have to move a muscle.

So why do we still have this preoccupation with having to work from somewhere special? Surely, having employees who work from home is beneficial to both employees and employers alike. Employees can work for anyone, anywhere, and so, can look for the job that is best for them, regardless, without having to move and the employer doesn’t have to pay for premises or heating or lighting or equipment for an expensive office building. Just make sure that employees have the things they may need to be able to work from home such as a computer, internet access and a phone line. Not only that, but they can employ anyone, from anywhere. They can employ the best possible person for the job regardless of where they are.     

It doesn’t sound too complicated to me.

I feel that we need to have a complete rethink about work and what work actually means in this country. We are in the technologically advanced, twenty-first century, not still stuck in the Victorian or Edwardian era. Why can’t employers, next time someone resigns or retires and leaves their business, look at the tasks that need to be done and really consider whether those tasks have to be done from an expensive office or if they can be undertaken by someone working remotely, from their own home? Adverts could be placed online, interviews could conducted by conference call and work could be done from anywhere. Bosses could check work is being done by looking at output and not by staring across their desk at  someone sitting at another desk on the other side of the room. Workers could feel trusted and valued. No-one needs to actually go or be anywhere. Happy employers, happy employees. What’s so bad about that? Telephonists answering the phone in their PJs? What’s the issue? The phone is being ansered regardless. Why not try it and see what happens?

Oh, and, if there are any amazing employers reading this, who would be happy to take a risk and employ a remote Advice and Information Officer, hiya! I’m here and waiting for your call!

Come on Bosses, take a step into the twenty-first century, be brave and go for it, you know it makes sense!

What an eventful political week.

Who could have predicted the momentous turn of events we have just witnessed only one, short month ago. Not me, for one. Saying goodbye to David Cameron and his team and hello to Theresa May and her’s is going to change so many things, long-term, for us all.

But, what do I as a disabled person, want to see delivered by the new regime?

Well, for a kick off I want to see an end to all Welfare Benefits sanctions, in particular sanctions which mean that disabled people are left without sufficient money to pay for food and medication and rent and energy costs and transport costs. I would like to see proper Welfare Benefits for disabled people where we didn’t have to continually justify our existence or prove how ill we are at every turn. Applying for Disability Benefits and attending never-ending face-to-face assessments or tribunals is soul-destroying, mentally traumatic and largely unnecessary. I want to see an end to people being punished for the crime of being too sick to work and being awarded benefit levels that allow us to actually live not just subsist. Just because we are either born or become too ill to earn our own livings does not mean we should always be put at the bottom of the heap or made to feel as if we are a burden on our families and society through no fault of our own.

I would like to see physically disabled people being able to access proper equipment based on what we want not what the government deem us as needing. The cheapest option is not always the best option in the long term. Giving us the bare minimum could be counterproductive. Spending a bit more to help us now may well mean less needs to be spent in the long term because our medical conditions might not deteriorate as fast, if at all because we are not having to struggle all the time for everything. There needs to be better provision of proper Mental health care and access to inpatient and outpatient treatment for as long as it needed, not a one size fits all system. Everyone is different and this needs to be recognised. There should also be mandatory mental health first aid training for anyone working with young or vulnerable people and for both physically and mentally disabled people, proper support for the NHS. I would like to see more funding made available for medical research which may lead to a better understanding of disabling conditions, better treatments and possible cures.

Another important consideration for many disabled people is care. I would like to see more money put into support for family carers, support for young carers. There should be mandatory respite care, for all disabled people of at least two weeks, annually allowing both disabled people and their carers a break where they can relax, safe in the knowledge that needs will be met. I would like to see this combined with increased level of social care. I would like to see family carers paid a living wage rather than just receiving the paucity which is Carer’s Allowance. I would like to see proper recognition of the value of family carers and how much money they save the nation. I would also like to see a proper rate of pay for all social carers. Without them and without family carers many more disabled people would need residential care or hospitalisation at a far greater cost to Social Services and NHS budgets.

And then there is transport and transportation costs. I would like to see a version of Taxicard available nationwide. I would like to see more investment in a fully accessible transport network. I would like to see much wider provision of wheelchair accessible transport such as Dial-a-Ride services and wheelchair accessible mini-cabs. Blue badges need to be universal for hospital carparks. There should be free parking or a refund of reasonable travel costs for relatives of people who are long-term in patients in hospitals.

These are only my initial thoughts and things that affect me personally the most but there are so many other things I feel that our new Prime Minister and her Cabinet should tackle that could benefit the lives of disabled and older people nationwide. Education, Transport, Access to Justice, Employment, the list is never ending.

Am I hopeful that we will see any of this?

Frankly, no.

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.