Month: October 2016

Why is it now inhumane to assess me?

Over the last few months, the focus of the apparent war on welfare reforms is to suggest that it is now ‘cruel and inhumane’ to assess people with impairments and chronic illnesses for benefits. The accusation has been turned into political fact where even on a Channel 4 news debate on disability, a Conservative minister felt obliged to use the term, presumably to avoid further abuse after the show.

I want to make 3 points about this growing accusation;

The first point is what exactly are people referring to when people say ‘inhumane’, which is such a loaded term? Are people really comparing being asked some questions in a formalised setting with an off the books CIA interrogation at one of their black sites? The accusation has no legal setting, no court in the land is going to rule these assessments legally inhumane.

This means it is a subjective accusation based on people’s general pity for those being assessed. Like it was once the norm to believe the place for women was in the home, it is currently the norm to regard anyone who has any kind of disclosed impairment to be automatically seen as unfit for society.  Welfare activists and films like ‘I Daniel Blake’ as fiercely reinforced this disgraceful prejudice to attack the inclusive ideology of the government, demanding the place for people with impairments is on the scrapheap.

The second point is one reason for the accusation is that these assessments are unnecessarily stressful, again based on people’s prejudices. Stress is also subjective and it is dangerous to believe it can and should be removed from people’s lives. Okay, we scrap these assessments, but what’s next? Our lives are full of many assessments in one way or another like mortgage applications, exams, apply for  a passport, blood tests and many more. Do we scrap them all because they are stressful? Do we automatically give some people what they ask for because we pity them?

I do find some assessments stressful myself and while how some assessments are conducted could be improved, they are a necessary part of a fair society. Those organisations who are profiting from ‘exposing the stress’ as a form of political campaigning should be spending their resources supporting people with assessments and overcoming the associated  stress.

The third point is the most important. If we indeed abolish these assessments, what do we put in their place?  This is a question I have been asking on social media with no response. What I fear would happen is people’s place in society would be judged solely based on appearance and labels, based on the prejudices of the vocal media.  This means that people with lifelong significant impairments like myself will be automatically thrown on the scrapheap at birth without anyone batting an eyelid. And this would just be the start.

Is this now ever closer reality not comparable to the same views that existed in 1930s Nazi Germany towards people with impairments? In a shrinking economy, if I am destined not to make a contribution to society because of the prejudices of others, why provide me an education? In fact, should I not had been ‘released’ from the chains of my inhumane existence at birth? This is the direction we are heading with films like “I Daniel Blake” laying the politically correct seeds toward eugenics.

Society has to wake up to the fact the pity fuelled prejudices towards people with impairments, being masked as positive activism, is leading down a very dangerous path that could justify the mainstreaming of eugenic thinking and practice. This is going to be more inhumane than any assessment could be.

 

 

 

What could adult social care look like in 2046?

There is currently a lot of talk about adult social care and the level of funding it receives. Clearly, more money is needed but I feel it is important that new monies are allocated in the most effective way, and that any ineffective or wasteful spending is reviewed. It is important that the national government and local authorities set the priorities with other stakeholders in an era of conflicting vested interests.

Social care for adults is a relevantly new and evolving concept that has moved from large service-led contracts towards meeting the needs and outcomes of individuals. It however remains complex to determine what levels of support people should receive to create a system that is fair to everyone, balancing entitlement with needs and outcomes.

If we now fast forward 30 years, leaving the current issues aside, let’s examine what social care could look like? The simple answer is that it could look like absolutely anything. Unlike health, education and collecting taxes, the demands and supply of social care is always changing. Care homes are a relevantly new invention that could easily disappear if the demand for this ceased. Improvements in health could change the game completely in ways we can not currently understand.

I think there are two factors that will play a big part of shaping social care; these are technology and public attitudes.

We live in a wondrous time where technology is increasing our opportunities and changing how we live at a speed previously unheard of. When you consider smartphones, tablets and smart watches have only existed for no more than a decade, and already started the collapse of print media and traditional television to name but a few consequences, you can see its impact.

This means technology could radically and quickly change the way social care is delivered in a manner we can not even begin to predict. Channel 4’s Humans have shown one future vision of social care,  where human staff are replaced by synthetics. But it could be more subtle like the rise in online delivery services. Individual users are likely to drive the demand to use new technology, especially if it is delivered in a mainstream way.

Public attitudes towards using social care are likely to change as social care is normalised into the way many people live, especially in their ‘third age’. Currently, social care is delivered to users who seem happy to take up a passive role of dependency. Older people  especially still fear challenging authority and appear grateful for anything they receive.

In 30 years, we will have a generation of older social care users with much higher expectations of what social  care should deliver, and will be unwilling to accept poor service, having the skills to cause major trouble to those suppliers who mess them about. This generation is likely not to accept being patronised by their adult children, who will not be allowed to make decisions for them. This means a lot of current telecare solutions designed to check ‘if mum is okay’ are likely to find themselves smashed up and binned. For this internet savvy generation, social isolation is unlikely to be an issue for professionals to concern themselves with.

Potentially a lot of the current perceived youth issues like drug and alcohol abuse could become issues for this generation, radically challenging the notion of passive compliant users as social norms change. It is therefore important those responsible for future-proofing their services understand the needs of future users. Unfortunately, I fear a slow pace of change will create a disastrous mismatch between demand and supply.

The key to the future of social care is understanding it could easily change its shape beyond the control of anyone. Those who bank on one specific solution becoming and remaining top dog may end up being very disappointed.

 

Disabled people are not always the experts

It has been a general statement of the ‘disability movement’ for many years that people with impairments are automatically the experts in the issues that affects them. This has seen the rise of user-led organisations who are seen as the ‘preferred supplier’ by the local and national governments regarding being the voice of ‘disabled people’.

This statement goes mostly unchallenged but is it always true? It is true that someone who has had a specific impairment for some years is most likely to have a lot of knowledge about that impairment and how it affects them, but it may not apply regarding people with newly acquired impairments. They are likely to be still coming to terms with the physical and emotional effects of their condition, learning how to effectively manage their impairment on a daily basis on top of the standard grieving process they may be experiencing in a manner unique to them.

But impairment, the biological effects, is only half the story as impairment often creates disability in terms of social barriers, discrimination, and prejudices. While most people with impairments who experience disability will understand the concept in terms of how it affects them, disability is a very complex subject once you start exploring it properly.

Now I openly admit as a brash young 20-something I bluffed my way into the disability consultancy and training fields as someone prepared to learn along the way. Over the next two decades, I explored the issues thoroughly to become the undoubted expert I am now. My expertise comes from the ability to listen to individual circumstances and only make judgments as an opinion when I feel I have all the evidence in front of me, avoiding as far as possible, sweeping statements. I am really not interested in the politics but the facts, and how a difficult situation could be made easier.

I am not saying everyone has to be as qualified as myself to have an educated opinion, quite the opposite. I would like to suggest that in terms of making judgments based on evidence and facts, people with or without impairments with other expertises can make a contribution to discussions, and should be able to comfortably challenge people with impairments on their viewpoint in the spirit of coproduction. And here we have the current problem.

For a whole range of reasons I have discussed often, we have entered a period of distrust between people with impairments and professionals, particularly in terms of being ‘fit for work.’ Here, the experts rhetoric has been adopted by people with impairments, including those with newly acquired impairments, to fiercely oppose the Work Capacity Assessment. This has created a battleground where there should be engagement, where all the parties have contributed to the mess that has been created.

People with any impairment can not be automatically assumed to know everything about what they are capable of doing as we often do not know until we have tried. I have always believed in trying everything at least once, especially leisure activities, to see how capable I am as well as how much I enjoy doing it. No impairment or any other label can be a prerequisite to determining individual capability now or in the future, and it does not help when the media often reinforces the experts rhetoric.

I am not suggesting people with impairments are always wrong or indeed lying, as they are likely to be expressing what they believe to be their capacity at that moment. But this does not mean that others, including people without impairments, can make effective challenges to assist them in exploring their capabilities in new ways.

But these personal challenges need to be conducted within a platform of co-production, which the current assessments are not, to be acceptable to those being challenged to explore what is possible, especially if it supported by new information and understanding. It also requires everyone involved to be always willing to learn and take points onboard.

No one should assume the experts role, especially when it comes to discussing individuals, and everyone involved should be willing to learn from each other.

 

 

How many people really understand inclusion?

I have always assumed that other activists shared my understanding of inclusion, as they have been saying the right words that led me to my understanding over the last twenty years. I have therefore been confused and frustrated to understand why in recent years they have radically changed their tune, now focusing on welfare issues with an exclusion agenda they do not understand nor realise its implications. Last week, it dawned on me that perhaps my frustration was caused by the fact they never really understood inclusion, seeing it as merely nice words on paper?

I do not see inclusion as a right but rather a responsibility and aspiration for high expectations. No amount of extra income or changes to the environment will create inclusion if someone is not motivated to include themselves. Inclusion is not necessarily paid employment, but this should never be ruled out. Too many people with impairments are pushed towards voluntary work, often within fat cat charities, as the only type of work they can expect.

Inclusion is being the person you are inside and not letting anyone or anything stop you from doing that, especially your own excuses. Impairment creates challenges that should not be ignored but neither should they become excuses. The world is not perfect, and it will never be perfect, so does unproductively complaining about the small parts not perfect really help the situation?

I fear that the rights that were supposedly designed to liberate people with impairments are in fact designed to slow down inclusion. If we assume these rights, even at a United Nations level with the UN Convention on the Rights of People with Disabilities (UNCRPD), were designed by people who did not understand how to deliver meaningful inclusion but merely how to write a utopian document designed to look pleasing, then we can see the problem.

The problem is all these rights assume in whatever context that impairment is a biological inferiority by activists themselves, which can be seen by the current ‘debate’ on whether people with downs syndrome should be allowed to exist. Therefore the rights are framed as passive and protection led in a similar frame to animal rights. Social protection (welfare benefits) and a humane existence will be the priority where other rights will just be standard political speak. When activists with impairments mostly accept this place in society and demand protection to remain in this social role, we can see why the current range of rights is oppressive.

The biggest test for UNCRPD in proving if it is a tool for inclusion or exclusion, will be the complaint made by UK welfare activists against the British government. The complaint is an attack on the government’s desire to include more people with impairments into paid work, as opposed to throwing them on the scrapheap. The activists however feel it is a right to be labelled unfit for society and sit at home doing nothing all day as its ‘more humane’. These activists also do not care about the cultural oppression people with learning difficulties face by charitable services nor the abuses of the powerful carers movement.

I fear the outcome of the UNCRPD investigation few people will ever be aware of will be a politically correct and socialist bias beating on the government for daring to see anyone who labels themselves as disabled people as having the potential to be fully included citizens, demanding their remain treated as vulnerable people regardless of their individual situations. So basically, the conclusion will be it is my right to be excluded from society but not included as this causes too much work for people. It will also confirm that social responsibility does not apply to people with impairments as it is always easier to blame others.

The fight for meaningful inclusion has not disappeared as I now realised it never existed, merely nice words on nice paper to mask a protectionist and exclusion agenda. So long as people keep their label based benefits regardless of what they actually need, everyone including the United Nations is happy.

When did promoting inclusion become a hate crime?

I have suggested for a few years that what is now considered the mainstream ‘disability movement’, made popular in the same context as Corbyn, are focused on the exclusion and by default, eugenics, of people with impairments. This is a strong allegation but two events in the last seven days have confirmed to me that my concerns are well founded.

The first event is when Liz Carr, a television actress with impairments and well-known activist, at a Labour Party conference fringe meeting, compared supporting people with impairments into employment with sending then to Nazi concentration camps! She then went on to explain how being a ‘disabled person’ in 2016 Britain meant you were hated and vilified by the government’s workshy and benefit scrounger rhetoric.

Now, there may be a valid reason to raise concerns about how people are being tested by WCA, but the idea of people being vilified is another issue and certainly not what it seems. The reality is the whole ‘benefit scrounger’ rhetoric was created by activists to combat the pro-inclusion agenda.

The means that activists like Liz will accuse anyone who supports people with impairment’s meaningful inclusion into society as labelling them as benefit scroungers, and so reinforcing a politically correct notion that excluding people with impairments is the only right way to think, especially when you may be a target of online abuse if you do not.

The idea that promoting inclusion is a hate crime has become so mainstream that even the government has been forced to take a step back, leading the 2nd event of the week. This is the proposed scrapping of WCA reassessments where the level of impairment makes it ‘pointless’.

This sounds a good idea in some cases although there is a sinister implication to it. It means for young adults with lifelong conditions that they will only be assessed once when they are 18 and basically left to rot unsupported for the rest of their lives, sitting at home doing nothing as nothing is expected from them. And as I warned many times before, this culture can only increase the rise in eugenic thinking.

There is also likely to be a growing list of impairment labels which will be automatically excluded from reassessments and ultimately assessments, fought for by charities like Scope and National Autistic Society, who welcome this exclusion policy. Endless pity campaigns about this or that condition will grow the list of people with impairments excluded from society simply to please middle-class prejudices.

If Labour is elected, when pigs start flying, and they do scrap WCA, then I fear there will be a secret and informal 2 tier system regarding the employment opportunities offered to people with impairments based on this list. This means under both systems, a ‘profoundly incurable’ person like myself will find themselves sitting on a state issued bean bag for most of their life doing nothing, simply because of the prejudices of others.

When the modern disability movement hates real and meaningful inclusion and needs to frame it ‘as the enemy’, what a mess we have gotten ourselves in to. But it is a part of the selfish society we now live in, where no one wants to take responsibility for their actions. Inclusion is hard work so why bother is the attitude of those who are happy to play the vulnerable victim if it gets them the cash they want without working for it like others do.

Inclusion must include a conversation about paid employment as this is at the heart of any post-industrial society whether it is a capitalist or socialist system. Assuming in 2016 that people with impairments must sit on the sidelines throughout their life living on handouts because they are naturally inferior is as backwards as the social roles we assumed for women and others in the past. Those who celebrate exclusion are a danger to people with impairments who require challenging to stop a long term solution offered by eugenics.