Is the third sector making a mockery of research?

While I was in the hospital over the summer, I started to watch BBC Breakfast, out of boredom as opposed to anything else. Around 8.40am each morning, they had a ‘general information’ piece which often involved someone important from a charity talking about their latest research, backed up by a few personal stories from individuals who appeared to confirm the findings of the investigation, with no one challenging it.

The research piece of my day would likely be selected because it had sparked the interest of the journalist responsible for the segment as they trolled through the 100s of news releases sent to them by charities each day, especially from those charities with dedicated press officers.

The research itself, whatever the topic, is likely to conclude directly or indirectly that their organisation has the solution to the problem, leading to hopefully government funded ‘after work’.

The problem is that it is now so easy for anyone to claim to be capable of conducting research, often without any academic understanding. You just produce an online survey with a few questions, promote it on social media allowing anyone to fill it in, wait until you reached the necessary 100 marks, and finally, make a song and dance about the headline figures.

The notion of sampling and validity, the foundations of credible research, are lost and probably unheard of by the researcher. Since the research is conducting in the name of campaigning, it is likely to bias before it even started, because the charity knows the answer it is looking for, even if this is unconscious. So rather than researching ‘people’s household incomes’, the research is ‘the impact of poverty on households’, so immediately framing the research in a biased way.

Allowing anyone to fill out surveys, as oppose to having a controlled sample based on gender, location, relevance to the topic, etc., means those who have something to say, usually negative, are more likely to be attracted. This means that any research that provides an opportunity for people to complain about a topic that has affected them will attract those with negative experiences more than anyone else.

The questions may be simple but used by the researcher to jump to conclusions because the reasons have not been explored in a full interview. So if you ask ‘have you missed a meal in the last 28 days’, there may be many reasons why someone would say yes, including the fact they were simply not hungry. But if the research has been framed in terms of poverty, the researcher may unduly conclude that it is because of a lack of money.

The worse kind of research is ‘feeling based research’. It may be easy to ask ‘are you worried about losing your benefits’, or ‘do you feel you are worst off than 12 months ago’. But what someone’s feel may have nothing to do with what has happened and will happen. And simply asking these question in the context of indirect party based political campaigning may easily lead to charities getting the results they desire, and the ‘evidence’ to prove their existence.

I, therefore, propose everyone looks more carefully at research conducted by the third sector and asks who is really benefiting from it? Their mockery of an important academic discipline may not be able to be halted, but it can be ignored and discredited.

Surely we all want Best Value for public monies?

I read wih dismay and frustration at the Charity Sector’s response to the government’s proposal that monies given to Charities by government organisations for services should not be used for lobbying. The Charity sector claim this is a vow of silence as they represent ‘the vulnerable’ against the Big Bad Government.

But lets just clarify this. Charities, who claim to be ‘not for profit’, feel they have the right to skim off monies intended to assist users of services so they can lobby government for their own interests? In any other context, this would surely be considered fraud and corruption?

Best Value is not a new term but I believe it is has relevant as ever as a core value to the spending of public monies. Best value is not about always going for the cheapest option, but ensuring the maximum outcomes can be reached for the money being spent. It is something the average household has to do and continiously review, although I am not sure the government is as good at doing this.

The reality which the socialist agenda appears to ignore is that the planet and society is built upon limited resourses. Many of the ‘cuts’ over the 6 years have been effective and nnecessary spring cleaning that has probably improved outcomes. Admittedly not all the cuts have keep best value in mind and I think monies could have been better saved while still maintaining or improving outcomes.

On a personal level. as someone who receives a lot of state funding in a number of ways, I want to feel that I am ‘best value’. By this, I want to believe I am able to make the best contribution to my community and society as I can. This does not mean I buy into the ‘benefit scrounger’ rhetoric but it does mean I have a social conscience and awareness I am not the only person who needs support.

Also being a long term user, being ‘best value’ means I should in theory be in a better position to maintain the support I require for as long as I need it. This is long term thinking I doubt many people care about and I feel this highlights the true level of selfishness that motivates many ‘anti-cuts’ activists.

Getting the most of every £1 of tax raised by reducing waste and avoiding duplication should be the goal of everyone. Best value requires people, including charities, to think far beyond their own interests and think about how public monies can be better spent for the benefit of everyone.

Unfortunately the rhetoric of austerity has caused people to be more divided, battling their own causes one cut at a time, without any interest in looking at the bigger picture. This more divisive era of politics, often led by the Charity Sector, and fuelled by obsessive social media, is sadly likely to keep Best Value off the agenda for many years to come.

Don’t forget the Spastics

I am very aware that the majority of readers will find the term ‘spastic’ derogatory but the reason I used it was it attract you to this article about cerebral palsy. The term was once very acceptable and before 1994, Scope was called the Spastics Society. My full medical condition is Spastic Quadriplegia Athetoid, which basically means my coordination in all my limbs is messed up, so I am technically a spastic, and I am quite proud of that.

I would like to suggest that within the complex issue of disability, each impairment or impairment group has had its day, when it is fashionable and appears on top of the pile as the newbie in town before being embedded into the social mix of disability. A few years ago it was Autism and Aspergers Syndrome, and before that it was Dyslexia. Right now, it is the whole issue of sickness, which I have discussed many times. Cerebral Palsy, one of the big traditional impairments, had its day in the 1950s or 1960s, certainly before my time and it is an impairment that just now seen in terms of being a physical and/or learning impairment.

The effects of cerebral palsy, which is brain damage at or around birth, can be enormously diverse and the services we have are so as diverse as any impairment can be as cp can affect any or every aspect of life. This has somewhat turned it into an impairment that can be covered by services in the name of other impairments but this does not mean cp does not have its own specific issues. There are also some myths and issues that need clarifying to ensure society can be more aware of ‘our needs’.

The biggest myth is that cerebral palsy is non-progressive and does not fluctuate and while indeed the brain damage we have does not change, the effects on our bodies and mind does. When people with cerebral palsy were all kept at home or in institutions doing nothing, of course our situation did not change. But as we entered mainstream society, working hard to be contributing members of society with all the stresses and strains that went along with that, it became clear that there is a whole range of secondary conditions that goes with cp like reflux, ingrowing toenails and possibly emotional difficulties that are just starting to be realised. Since these secondary conditions will appear and be accordingly treated, it does mean that our functional ability will indeed fluctuate, and so it is right to have periodic assessments from various services.

Adding to this is that because of improved birthing techniques and medical advances, people with more severe cerebral palsy are surviving after birth and there are less babies born with mild cerebral palsy, which means the demographics and associated needs of people with cerebral palsy are continually changing, and so it is important there are organisations who can give good advice and represent our specific needs within health and social policy.

It is therefore incredible that cerebral palsy is the only impairment in the UK, major or minor in terms of numbers, that does not have its own organisation, which is proudly and strongly fighting our cause. I know many readers will say no, we have Scope, but that is simply not the case. Since it changed its name in 1994, Scope has steadily and slowly abandoned people with cerebral palsy, maybe out of embarrassment in the name of the social model, for the more fashionable and profitable image of being a pan-disability/impairment organisation. In 2007/8, Scope had a small “About cerebral palsy” project to remind itself of its historical expertise and that they may need to do some work on the impairment, but the pending recession meant the project was cancelled and that was the end of Scope’s relationship with cerebral palsy. While many of its service users do indeed have cp, it is more historical rather by any current design.

I am not suggesting it is time for cerebral palsy was back on top of the pile again as we must offer every condition its own political and social space. Being disabled is not the same as having an impairment in terms of identity and experience, and it is important I can have a voice as both a disabled person and someone with cp. While social media is indeed growing the voice of people with cerebral palsy, it is still in its infancy with small groups that has still not reached a stage able to explore the fascinating complexities of cerebral palsy and bring that debate into the public arena to influence social policy. But it will come and in the meantime I ask the many disability organisations and political factions not to forget us, even if we have been very old hat for such a long time.

The real reason I did not attend the Labour Party conference

Several months ago, I applied for Leonard Cheshire Disability (LCD) ‘Access all Areas’ scheme that supports disabled campaigners to attend a party conference. My application was upfront about who I was and I believe on that basis, I was successfully selected to attend the Labour Party conference. Unfortunately, due to specific circumstances I was not able to go and I can now give my side of the story to this sorry situation.
Just by chance rather than anything else, I started blogging for the Huff in August and at the same time wrote an article for a so-called disability news service on why I intended to work with ATOS. These events collided into an explosive response from many so-called disability activists, and so I was attacked and demonised with vile personal comments simply because I dared admit working with ATOS, despite the fact that so many also do but are too cowardly to say so. For weeks I received so much hatred from these so-called activists, who in reality seemed to show their dislike for the human race in their abusive behaviour. I duly responded to some of their hateful tweets with some honest remarks I still do not regret as their remarks were farmore abusive to myself and true disabled people.
When the announcement came from LCD that I had been selected to attend the Labour Party conference many of these spiteful less disabled ATOS haters became extremely offended that a real disabled person, one they seemed to regard as too profoundly disabled to deserve a voice, had been selected, using my defence against their hate speech as an excuse to deny my free speech. According to a supposed bias journalist/blogger, one of the complainants was Ian Jones, on behalf of the WOWpetetion. The WOWpetition is the brainchild of  Francesca Martinez, a middle class woman with CP who thinks she is the Bob Geldoff of disability as she tells the mainstream media the lies and myths of the so-called disability movement in a fashionable way.
The aim of the petition is to get the government to produce an anti-government report under the guise of a Cumulative Impact Assessment, which serves no real purpose other than wasting time and money. The potentially lengthy commission likely to be made up of the disability elite and non-disabled experts would simply allow the disability charities and others toline up to present their list of demands for more money to further disempower disabled people, in the name of evidence! While it is Francesca’s job topresent the petition as their angelic political correct thing to do, it now appears it has been left to Ian to eliminate the competition and to use his army of mindless ATOS hating robots to verbally, and possibly physically abuse, any disabled person who refuses to portray themselves as unemployable worthless victims in line with his self-loathing ideology. This is very odd behaviour for someone who claimed in a recent comment to one of my articles not to want to represent disabled people?!
You would have thought when his complaint was put in the hands of LCD it would have be dealt with in the sensitive manner it deserved? Well, no. The first I heard was when I got an email from a manager I did not know saying she was coming to see me the next day whatever without any explanation. As someone used to this kind of bullying from so-called professionals, I rang them up and they reluctantly told me that they had simply decided to withdraw their support for me going to the Labour Party conference because of my apparent abusive tweets. I asked them if they can at least give me a right to reply and they said no, nope, not at all and that this was a decision made with the support of the Chief Executive, Claire Pelham. I had to really wonder what was the point of meeting me if they already made they mind up other than to abusively rub salt into the wounds?
Let us leave their decision for one moment since that was their prerogative and focus on the fact they did not give me a right to reply: Some readers may be thinking ‘and so?’ Well the point is for a charity that provides care services and is supposedly inspected by the Care Quality Commission, this is certainly reason for grave concern and I will explain using another example. Say I am a service user in one of their care homes and a member of staff had made a complaint that I swore at them and in line with their supposed zero-tolerance policy I was given 24 hour notice to leave the service, effectively making me homeless without any right to reply. Because the matter was not investigated I could not explain the staff member had been hitting me and I was too scared to say. Unfortunately this abusive action it happened once, to me, could mean that it will happen again, especially when you remember the actions were at the direct approval of the Chief Executive.
After the BBC Panorama programme of the abuse at Winterbourne, everyone in the care sector, including LCD, promised it would never happen again. However, this is real evidence that within this charity, the ingredients that made grave abuse possible are alive and kicking. All I can do is bring my concerns to the public attention before someone less able than me suffers at the hands of LCD, or indeed the WOWpetition. There is a darker side to the disability field that we all need to take into account, as the voice of the minority protects itself from real voices like my own.

More information on the matter can be found at www.simonstevens.com/accessdenied

No One Can Represent Disabled People

I realised a long time ago that no one can properly represent disabled people, a total of 12 million people if we believe the statistics, but this does not stop many people trying. The problem is as I said in a previous article that there is firstly no clear definition of what is a disabled person and secondly, the diversity of impairment is huge and that does not take into account the extremely wide range of backgrounds disabled people have. So I fear when individuals imagine the disabled people they are talking about, they have very specific people in mind rather than the huge totality of disabled people.

The UK has had a large number of national and local ‘user-led’ organisations ‘representing’ disabled people for many years and while I can appreciate the logic of them, I am not sure why a bunch of unelected and often unaccountable people who simply share a political and socially constructed label with me should have the right to dictate and control aspects of my life in terms of being my voice in national and local government policy. The reality is this generation of organisations has moved from being grassroots organisations to simply third sector service providers following the funding opportunities wherever it takes them, simply to keep their paid staff in jobs, moving further away from their original purpose of representing disabled people, assuming that was ever possible.

As a result of the supposed government cuts, there has been a new generation of militant organisations and activists who feel the need to claim they are now the voice of disabled people without question like ‘disabled people against cuts’ and ‘black triangle’. These angry organisations assume if they think it, every disabled person thinks it and they have recently attempted to look credible by publishing a ‘manifesto’, which is a mixture of ideology and demands for things already in place if they bothered to look. This new generation of representatives is focused on a minority of working-aged physically impaired people as well as those with mental health issues, who are most likely to be affected by the cuts, and certainly not representative of those of us who wear bibs.

These ‘grassroot organisations’ are supported by a series of self-styled leaders who feel they have the authority to arrogantly represent all disabled people, like Sue Marsh, without consulting others. And while Sue does indeed have a lot to offer the debate, I just wished she realised the history of disability politics did not start with her, especially considering the way she imposes her natural prejudices and discomforts onto other disabled people. But at least she talks as a disabled person because what is worse is when the non-disabled chief executives of so-called disability charities like Richard Hawkes from Scope, and Clare Pelham from Leonard Cheshire Disability, regularly portray themselves in the mainstream media as the authoritative voice of disabled people as they make wild accusations based on their never ending GCSE level ‘research’. The reality is their only priority is to keep their middle class staff in well paid jobs by ensuring disabled people remain dependent on their services.

I know one of the criticisms often made against myself is that I try to represent all disabled people but this is simply not the case. I am an observer of disability issues and I attempt to help others navigate the complex landscape of issues, needs and opinions. I say ‘some’ or ‘many’ disabled people as loose descriptors as they could refer to any number of people. I do see beyond my own impairment and situation and while others may not agree, I do understand the viewpoint of others, such as why newly impaired people may not like being disabled, but that does not mean I have to agree with them or feel they can not be challenged. This is because I comment on disability issues as an independent individual, something some people find very difficult to understand as they often frown upon my use of ‘I‘ rather than ‘we’.

I do find it strange that many people only frame disabled people in terms of their political status as ‘disabled people’ and fail to see them as diverse individuals who should be seen as ‘individuals’ in terms of their needs, wants, outcomes, desires and opinions. The term disabled people is functionally meaningless as a tool for representing people and it is time everyone was more accurate in who they are talking about, and this may mean we need a whole new language to describe the varying and diverse social and political sub-groupings within disability.

I think if you wish to know what a specific disabled person wants, just ask them in the way you would with anyone else rather than just assuming someone else has the authority to say what they want on their behalf.

Why do charities not help individuals anymore?

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I believed there was a time when charities gave money to individuals when they were in crisis or needed specific support with equipment and other costs, and that this time is going or has gone. Now so many charities are simply ‘not for profit but still big salaries’ businesses who run services on behalf the local or national government. While I do agree with the not giving fish but giving fishing rods ideology, it should still be about supporting, enabling and empowering the individual but these so-called charities are now too dependent on the income of maintaining the level of need for the services they run to be interpreted in the individual.

 

Charities need to either admit that they are now no more than businesses at the cutting edge of this government’s bargain basement privatisation policy, where contracts are awarded on the deal a percentage of the staff are unpaid and so-called volunteers forced into these jobs for required experience, or return to their roots and start supporting individuals again in a traditional meaning of charity.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  

 

You are not a charity

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It is clear to me that many charities have grown so big, so powerful and so commercial that in reality they are no difference than commercial enterprises. Many charities no longer provide money to individuals to help them in whatever way but simply ‘third sector’ providers of government services on the cheap and with the endless excuse of “we are a charity”. I find it very worrying that in the name of Big Society, public services are handed to charities on the shy that depends on the portion of staff being so-called volunteers, as a new form in slavery enters this country.

 

I feel we should accept the era of charities as charities is over and require them to convert themselves to proper ‘social’ enterprises who are be honest about how many of donations in spent on staffing costs and doggy research, and how little is spent actually helping the people are claim to represent. And its shameful they claim to be the allies of whoever when they have a vested interests in creating victims so they can get bigger government contracts.

 

The illusion of charities must end and the public should smell the coffee and see how they are being fooled.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  

 

Is the tradegy model of disability winning?

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I have not discussed it very much but as well as the medical and social model of disability, there is also a tragedy model of disability, which portrays disabled people as victims, unable to contribute properly and equality in society and constantly dependent on the charity of others for their existence. It is clear to me that the opposition to be welfare reform has successfully used the tragedy model to devalue disabled people, especially because there is a vocal minority of so-called disabled people who live the tragedy model, in the way I live the social model, and campaign accordingly.

 

I went to a major disability conference yesterday, which was very much a showcase for all the disability charities, and while they all said they were committed to the social model, because it is political suicide to say otherwise, it was clear in reality there was using lies, myths and half truths about the welfare reform and social care to reinforce the tragedy model that keeps them in business. I must wonder with the liberal media also reinforcing the tragedy model, is it winning and what does this mean for the social model?

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  


Beware of the medical research charities

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It is worrying how many medical charities have adverts on TV proclaiming you have a moral and social duty to donate money to them to solve Cancer, Heart disease or some other condition. My concern is if the NHS is free at the point of delivery, why do have a give money to charities so a lot of highly paid doctors working for drug companies can be subsidised, especially when the drug companies then charge high amounts for their new patented drugs, we paid for, on the excuse they must recoup their research costs, which the NHS can then not afford! 

 

It’s a corporate con which most people simply do not see, because their fears of being ill is used to rip them off. It is something that needs properly investigated and regulated so people understand this is not the way to help people with conditions, just the drug company fat cats.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  

 

Charities must be made more accountable

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When you give £1 to charity, do you really know when the money is going? Because it is guaranteed not to be where you believe it to be going to. Why is health research apparently funded by charities but the NHS can not afford the breakthrough drugs and treatments because the drug companies complain they must recoup the research costs, charities paid for?! How many wells does Africa need and what are their own governments doing? And what on earth do disability charities do all day other than attack the government calling disabled people vulnerable?

 

The charity industry must be more transparent and accountable to the public for your actions. Adverts should indicate how much of their income is spent on staffing costs and the public should have detailed access to information about their activities and costs on their website as a matter on law. Then when the public can see so-called charities for what they are, they can make better choices.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com