The Independent Living Fund was started in 1988 as a short term solution to the implementation of community care for people with high support needs. 24 years is it still going as strong as it can be, supporting 21000 users. While it has since 2010, before the last election, not taken on any new users, its demise has been incorrectly reported by the disability movement propaganda machine designed to deliver fear. What is happening is the fund is going to have a consultancy of its future any time now.
As someone with high support needs, the fund has been one of the funders of my personal support package for over 10 years and therefore I am going to want to have a say in its figure. I feel unlike many of its politically active users, I do have an open mind about the future of the fund. I only believe that despite the misinformed fears around, the government is not building a new generation of residential homes to put users in.
I see both the case and the opportunity to reform the fund to meet the needs and desires of a future generation of people with high support needs, especially in terms of supporting people to make meaningful contributions to society. There are many options to consider and I will be producing a report with all my ideas when the consultation is in full swing. This is however an unique opportunity to bring the fund closer to the wider social care agenda.
When I hear the many greedy demands of people who claim to be disabled, they appear to be almost exactly the demands being made 10 years ago, 20 years ago and even 30 years ago. However Society has radically improved for disabled people in this time but the number of disabled people contribution to society has not increased much.
So what has gone wrong? Disabled people were given a bundle of rights, a lot of money and a freehand to get their act together as equal contributing citizens, as independent living, in their own time. But apart from the taste for greed, what have the political body called disabled people achieved? I would say very little.
So no wonder the government is saying you had your opportunity to get yourself sorted and you have wasted it, and maybe even abused it, so we are going take a more direct approach. And so quite rightly, after a honeymoon period of new rights, disabled people need to start taking responsibility and so we have the start of welfare reforms that will be the only way of improving the actual and portrayed equality of disabled people.
Not all of us wasted the opportunities provided to us and I feel those who put the effort in will always be rewarded in the long run.
I would argue most people think what the government think and do in set in stone as proclamations made upon high no one can change. I have often been told that changing things in government is like trying to change the direction of an oil tanker, very hard instead.
But with this government, while they like to appear that they are in control and do not need to listen, the reality is they are listening and they have to. Beyond the huff and puff in the media, we are in an economic climate where it is going to be very hard to get anything right and therefore this government is needing to become a lot more dynamic in the way they operate.
I personally believe this means there will be plenty of tweaks of the welfare reforms and health reforms over time to take into account a fast changing environment. Like we now understand GPs are not gods, the government is not the big untouchable monster it once was. It would however help if people who wanted to make change rang the doorbell of government and stopped throwing stones at the windows, but that may be too easy for some people!
The politics of Disability has been a replication of Animal Farm, where some impairments are more equal than others. For years it was people with spinal injuries on top, but how those on top are often are disabled people that will not disclose their impairment and shout hate crime if anyone gets anywhere near finding maybe they are not really disabled.
People with cerebral palsy have been around a very long time and I would argue for a shile range of reasons, people with cp have one of the strongest and well rounded impairment identities. I would also argue that in terms of working aged social care and the increasing severity of cerebral palsy, we cost the most on an individual basis.
Yet, at this moment of time, people with cerebral palsy do not have any national charity or organisation which is solely representing them and their needs and desires. Scope may cough and splatter at this but over the 15 years, there are moved away from caring about cp to a more generic notion of disability because of some notion of political correctness. Now someone with an head cold is going to be better supported by Scope than anyone with cp.
To make matter worst, the disability farm has now been cleared to make for a new generation of people claiming to be disabled, simply because of the cold hard cash and the free car. This means people with cp have been pushed right off the agenda and kept the metaphorical cages as their political space and voice is ransacked. I would argue people who thought people with cp were better off dead last week will not suddenly think any different this week because they have diabetes or whatever, and now eligibility for benefits. So ofcourse there will not mind a few mercy killings of real disabled people if it means more money left for them.
If people really believed in the social model, they would be talking about their impairments and not their disabilities. We all end up saying disabled people because there is no language for a post social model world, which we are approaching. I am not saying people with cp should get special treatment but fair and equal treatment in the issues that affect us without people who other impairments stealing their voice. We need to think “All same All Different” not “All same All same (or else!)”.
I was somewhat amused when I read some user led charities was complaining how the Government’s work experience scheme is slavery, when they really need to look at their own practises. While user-led charities may claim to represent disabled people, the reality they treat them as the personal slaves on their paid staff, as they are forced to giveaway their expertise and experience for the benefits of councils and companies the so-called charity has been paid to support.
I am tired of the fact user led charities fight to keep disabled people unemployed so they are forced to help them as so-called volunteers. They are forced because many user-led charities have been paid to either deliver or play a key role in an essential disability related services and therefore if disabled people do not fill out the long and boring questionnaires or attend the many pointless consultation days, they fail to have any say in their own lives. Companies are often prevented from employing disabled people directly as paid experts because of political correct agreements they have with user-led charities to exploit their members for free.
This demonstrates to me that many disabled people are working but simply not getting the pay or recognition they deserve. The scam of user led charities needs to be make public, and they need to be supported to become proper profitable user-led businesses where all disabled people are paid for the work they do for others and not just those at the top of the food chain.
I have prided myself on knowing about the many organisations that exist in relation to disability both voluntary and commercial, and there are tens of thousands of them, many claiming to do exactly the same thing in isolation from other organisations, and many have been doing the same old thing, not moving forward, for as long as I can remember.
The amount of waste of resources that exists must be huge. One example is the amount of research which is carried out by disability charities to arrive at the same old conclusion. Would it not be better putting that money into services that enables and empowers people rather the tells people what they always know as some form of publicity stunt?
The problem is the minute user led organisations begin to employ staff, the agenda of the organisation is moved away from the people they claim to represent and to simply keeping its staff in employment in some sort of politically correct loyalty. This means they will apply for project funding on any old nonsense regardless of how useful it may be. The latest ‘project money’ doing the rounds is researching Hate Crime, so those who invented it can gain support by collecting case studies their creation is now understood.
What I find most concerning is the money is wasted is the name of disabled people as organisations want us to believe they are doing us a favour for keeping themselves in business when average disabled people are not benefiting from this gravy train. If they want to profit from disability, no problem but be honest they are doing it for themselves. I only hope history will record this sad period of wasteful inaction correctly.
When I think about how anyone should be supported, I think of the old Oxfam advent which explained people did not want fish to be fed but fishing rods so they can catch their own fish to feed themselves. There is what I call enablement. People also need to be taught how to use the fishing rods and that is what I call empowerment, where people are provided with control and responsibility for their destinies.
While this is so simple, this is not how either the welfare state nor the charity industry is designed. Rather than working with people, running along side them as they continue to develop themselves, the state and charities keep those who need support dependent on them to live life easier rather than richer. There has been little imagination nor any progress in the lives of many disabled people because it has not been in the interest who profit from simply providing a never ending supply of fish.
The way people are support can change as well as how organisations who provide support are developed, it simply takes a high degree of honestly and some creativity!
A few weeks ago I read a report that suggested the new way of assessing the new Personal Independence Payment by using a face to face assessment/interview will by too stressful for people with certain conditions like autism and so they should be exempt from it. For me, this is utter nonsense.
The fact someone is labelled with a specific conditions means they have already been assessed once by doctors and for people with lifelong conditions, they can go through a never ending barrage of health, social care and educational assessments. If people want support from the government they must be willing to jump through the hoops needed.
I do agree they are probably too many hoops to jump through and that the outcomes of some of the hoops may be unclear or unfair, but people who want support need to take some responsibility by jumping the hoops and can not except taxpayer’s monies on their terms. If people do not cope well with face to face meetings then that is clearly going to demonstrate their need for support.
Many people with impairments are far less fragile than people would like to portray them us.
The paperless society has been printed since the 1990s but with the advent of Tablets, this is now really possible especially we are seeing a slow revolution in one of biggest users of paper, which is ofcourse newspapers. The Guardian has already committed itself to be ‘digital first’ when its digital editions will be seen as its core business supported by a paper version until it is no longer required. I am sure many other newspapers will follow this trend especially in this economic climate.
The benefits of digital newspapers on tablets and other devices are clear and while some will moan the lure of newsprint, time must move on as the 21st Century becomes well, the 21st Century!
The recent battles over welfare reforms have created a new movement of people who describe themselves as disabled people are I would argue actually long term sick or just impaired, and this has really muddied the waters on the term ‘disabled people’ as it is abused for everyone’s benefits except maybe disabled people.
While it is politically incorrect to argue that you can not compare the needs and experiences of someone with diabetes or depression with those of someone with severe cerebral palsy it is a fact. Those who shout and scream it is divisive to use labels and we are all be together are not having their needs ignored, their voices unheard being walked over and having their resources taken away to pay for the wants of other people.
In the social model, disability is external to our identity which can be seen when we encounter barriers. Therefore our impairments and conditions will be more significant to who we are and how we represent ourselves. Therefore it is absolutely wrong that someone with one impairment can represent and dictate the lives of another. While some impairments like Autism appear to be allowed to talk about their impairment, people with cp are always punished politically for trying to do the same.
I believe people with lifelong impairments often have less condition specific medical interaction in their lives and there more likely the live with social model. In opposite, people with newly acquired impairments or conditions will have learnt this through medical intervention and are going to live the medical model. They need DLA and the benefits system to valid themselves as they fight to become unemployable second class victims of society.
There is nothing wrong with what the sickness movement wants if people with other impairments we permitted to say you know what, thank you very much but we are not the same and we are going to represent ourselves on our own from now on. The problem with is the sickness movement, in the guise of a pan-impairment disability movement, needs people to believe they need the same as people with significant impairments, to get what they want.