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Saturday, 14 May 2011

what is the cost of being disabled?

I am writing this when there is much uncertainty in the world for disabled people. The government is making it there mission to hit disabled people, with unnecessary cuts and attacks on benefits for disabled people that, contrary to the story the media feeds the general public, is not abused. Only this week, approximately 8000 people joined the Hardest Hit March to protest against the devastating attack on disabled people. Disabled people as a whole have always been some of the poorest people and this is only set to get worse.

For many, everyday is a fight, made worse by the fact they cant afford to live. To live with a disability means expense that the average person cant even contemplate. I have always tried to live as 'normal' and 'full' life as possible, but unfortunately this has always come at an extra cost, financially, emotionally and physically. I will focus on financially for now as this is a very hot issue that all disabled people can relate to.

From a very young age if I wanted to live a good life than this was going to come at a cost. To make my life easier I have always required specialist equipment, that unfortunately at times I have been expected to find the cost, for example to get a wheelchair that I feel meets my needs I have always had to top up with my own money to get the chair that meets my true needs. When I was a child my mum had her own problems with her back, I was assessed for a new wheelchair and my mum was told that her needs weren't taken into account even though she was the person who always had to get my wheelchair in and out of the car. This led to my mum having more problems, It was decided that a wheelchair would be purchased for me privately so that it could both meet my needs and those of my mum. This wheelchair I kept till I was driving, where I learnt that even this wheelchair although much lighter than what I had previously been used to was still almost impossible to get it in and out of the car on my own. So I went through the whole process of applying for funding again, this time I went for a wheelchair that they offered me, simply because it seemed to be marginally better than the one I was using. This was the last time I made this decision and ever since I have topped the money up, to get what I need to be able to live, as what is deemed as suitable sadly falls very short. It is worth noting at this point that my current wheelchair cost around £3,000 and the NHS only gave me £1,800, I was fortunate to get some funding from "access to work" which helped bridge the gap, the future of "Access to work" is uncertain making it more difficult receive funds for what is needed. My wheelchair has to last me 6 years and I have to meet all the costs of maintenance. A pair of trainers might last 6 months if you are lucky at a cost of £100 if your splashing out. If you damage your leg it heals and the NHS help you fix it, if my chair gets damaged I have to pay. If someone can explain how that is fair I would like to hear it.

Other extra costs I experienced growing up included having to get taxis everywhere rather than using a bike or bus like many of my friends were able. When I was growing up the majority of buses were inaccessible and although this has improved, there are many occasions when this is still sadly the case and so it is always made much harder for myself as a disabled person to catch a bus. In fact there was a time recently when I started to get the bus into town to save me driving. Only to find that I was unable to get on the bus, not just because it was inaccessible but because there was a mother with a buggy who wouldn't collapse it to allow me on. This is okay on a glorious sunny day, but on days when it is cold and wet, there is no fun in having to wait much longer for a bus than my able bodied counterparts.


A subject often overlooked for disabled people is that of sport; as a child I was lucky with my school they regularly encouraged me to get involved, even helping me to purchase a sports chair (albeit quite basic). Unfortunately that was not and has never been my experience outside of school. I have always been keen to be involved in sport, unfortunately I learnt at an early age this was nigh on impossible with regards to disability sport. Not only was I sent round the houses when wanting information I soon learnt that to have the same opportunities as my able bodied peers it was going to be very expensive for me. For example if someone wants to take up running, all they need to get is a pair of running shoes and off they go. For a disabled person to have the same opportunities they need a specialist sports racing wheelchair. This is the same for many sports for disabled people. Recently I started learning how to play wheelchair tennis and I am lucky to have a sports wheelchair which I got some 15 years previously which is amazingly still in reasonable nick. As you can imagine technology has come on a great deal since I got this wheelchair and so if this is something that I want to get good at I will have to get a better wheelchair which could cost me anything in the region of £1500. For my able-bodied counterparts you guessed, all they need is there tennis racket, tennis ball and some trainers cost £100. It is worth noting that DLA is not designed for this that is only for care and mobility (I'm clearly not allowed hobbies). So, is it really fair that it costs me more to live, through no fault of my own, yet the state makes it harder for me to live by taking the smallest amount of money away from me, that I need for my extra personal needs.


Ok so you're thinking, why do you need to get involved in sport like this and you now have a car so you don't need to worry about the inconvenience of buses? That is not the only cost. Due to my disability I am very grateful to be entitled to a motability car because if I wasn't I would never be able to afford to drive once insurance, tax and I mustn't forget the most important aspect for me and that is the gravely expensive adaptations that I require and have no choice about having if I want to drive and still have some independence that is on top of the actual cost of the car. My husband recently brought a car, his decision was simple, small, cheap, low mileage. For me it would need to be automatic, big enough for me to put my chair in, ensuring the gap between the door and chair isn't too big ... I could go on. Motability is a massive lifeline for me which by 2013 could be taken away. For those who don't know Motability is a charity and in exchange for my car I give up the higher level mobility component of my DLA.

It is also a very sad fact that when a disabled person would like or even is able to work, this is rarely made possible due to the negative view about disabled people, with people focusing on what can't be done rather than what can be done. Disabled people often require a much more understanding, forgiving environment to be able to work effectively which is very unlikely in the world that we live in. A recent article in the guardian speaks of this problem and that of the greater problem of the way disabled people are in society. The article is here: http://www.guardian.co.uk/society/2011/may/14/disabled-face-increasing-hostility-strangers, it shows that with the Government constantly labelling us as work-shy, drug addicts who drink too much we pay the price from strangers who know nothing about us. One of the worst is in fact Maria Miller MP who is the Minister for Disabled People! Indeed even the Guardian, one of the better newspapers, gets it's facts wrong. It mentions that DLA is people who are physically unable to work, this is incorrect. As already mentioned it is to help with care and getting around., it is the least abused benefit.

So, as you can read from this blog there are numerous additional costs involved with being disabled and in particular a wheelchair user. If only a member of the Government would sit up and take note. It is ironic that on March 26th 500,000 people marched through London, on May 11th around 8,000 disabled people marched though London both in protest at Government cuts. Are we really all wrong?


9 comments:

  1. I've recently realised that there are an incredible amount of things I have to spend money on that a non-disabled, non-sick person wouldn't need to.

    There are the big costs, which are more obvious, such as wheelchair purchases and maitenance ... but also so many small purchases which together build up into a small fortune.

    Even things as simple as clothing have to be carefully thought through as to what I'm physically able to wear without my pain becoming intolerable - and very often turns out to be much more expensive than I can really afford.

    I agree. There isn't anything fair about it at all! I don't want to rely on the government for handouts just because I happen to be ill and disabled ... but I have no other choice at this time in my life. Regardless, I shouldn't have to put up with the rants and cruelty of people who simply don't understand what life is like for someone like me - and don't care to look at the world through my eyes.

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  2. have you been made aware by anyone of an e-mail protest on 26th May to call for a vote of No Confiedence in Maria Miller MP Disabilities Minister, If you are amenable I can send you a copy of the letter to be e-mailed to your MP, which you can also circulate among your freiends, family, aquantences and any other web pages you use to spread the word that WE will no longer be locked away in silence or be greatful for what little life mainstream socieity pities us enough to allow us to have.

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  3. Susannah, Thanks for your kind and understanding words. The only way to change things is to make ourselves heard any way we can.

    Jean, thanks for this information please could you send me a copy. As I said to Susannah as well we need to make ourselves heard

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  4. We now have a Tweet set up for the event too :-
    TWEET THIS ->>>>> Can everyone send this to their MP on 26th May? Major FB email event THAT day re Treatment of Disabled people http://j.mp/jTOFAR

    Or this is a copy of the letter to send to your MP :-
    Dear Sir(s)
    I, and many others, believe that there should be a vote of no confidence in Ms Maria Miller MP as Disabilities Minister for the following reasons:

    1) For failing to fight hard enough to ensure that disabled people receive a fair assessment of capabilities (specifically the Work Capability Assessment implemented by such companies as ATOS, which is generally acknowledged to be a flawed test).

    2) We believe that recent and planned cuts to benefits for disabled people, as well as the cuts affecting disabled people generally, will bring: harm, a loss of dignity, and a loss of independence to disabled people both at home and in their working lives. We believe that her absence at the ‘Hardest Hit March’ on the 11th of May 2011 shows that she is reluctant to engage directly with disabled peoples' concerns.

    3) We believe that Ms Maria Miller has not taken a sufficiently strong public stand to protect disabled people from disability hatred. Such disability hatred may include acts perpetrated by the media or individual perpetrators of verbal abuse, violence and/or criminal damage when it occurs.

    It is for the above reasons that I, along with many others, believe that Ms Maria Miller MP is out of touch with the worries, concerns and outrage felt by disabled members of society, and therefore urge ministers to press for a vote of no confidence in Ms Miller as Disabilities Minister.

    Name, Address.

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  5. Thank you for an interesting an well written article. It's things like this that people really need to be aware of and in fact is one of the topics we touch on in our sessions - Elephant in the Room (www.elephant-in-the-room.co.uk) is a disability awareness training company and one of the things we do is to try to make people see the real problems that exist just in trying to make us all start from the same place. It's not always easy, is it?

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  6. I signed that petition when I saw links to it flying about on Twitter. Yes, we do need to make ourselves heard ... and I think we need people in government who are truly capable of helping us do that. Obviously that just isn't happening to any great affect yet.

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  7. Jean- I have shared the link on Twitter and joined the group on Facebook, although I don't go on facebook very often.

    Elephant in the Room - That sounds very good what you do, I know from my own experiences, it will take time and it is about educating people.

    Susannah - It is happening more and more. We need to be positive, thinking it will help will always make it easier. We have a long way to go, but small steps!

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  8. I have an adapted van, hand controls cost over $100,000.00
    Another thing that "costs" people with disabilities (though not a dollar amount)is negative attitudes of others. This results in being overlooked in the area of employment thus costing real money. It may also be social discrmination that devalues self-esteem. I blog on disability topics and invite people to visit and offer their comments.

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    ReplyDelete