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I need to feel I have a place in society

In recent weeks I have been reflecting on what are the triggers that cause me to become annoyed, particularly in terms of what I read on Twitter. My conclusion is that what annoys me the most is when I feel my value in society is being undermined, especially when others do not see things in the manner I do.

The bottom line is most political activists and commentators, even those who regard themselves as forward thinking see impairment as a welfare issue wrapped up in the language of compassion and rights. While their call for ‘the sick and disabled’ to receive the benefits ‘they deserve’ may indeed be well meaning and hard for anyone to disagree with, it is important to understand the real message being peddled in the name of socialism and ‘disabled people’.

Should I receive the support I need to participate society? Ofcourse! Can every person with impairment immediately find work they can do that will meet living expenses? Obviously not! But this is job done and does this really give Jeremy Corbyn the right to clean he cares about when he is simply using ‘helping the disabled’ as a cheap shot against Osbourne, when both parties are as bad as each other? Why do socialist who claim they care people as they are impaired themselves have to label me a ‘nasty Tory’ simply because I believe people with impairments as a real place in society rather than just inferior beings who need money, pity and money. We also need to  remember it is less than  12 months ago since my Labour MP told me to my face he was unable  to support my right to be protects against the threat of ‘assisted dying’.

I need to feel I have a place in society and I should not have to feel I am politically incorrect as well as cyber-bullied because I hate the endless socialist rhetoric that informs the public I am an inferior being, often by the many ‘disabled’ and ‘non-disabled’ led charities that profits from keeping being like me excluded, disempowers and isolated. Their power tools including the myth of hate crime, as believing I am not inferior and I have to take responsibility for my actions is somehow evil,  justifies locking up people in homes run by fat cat charities supported by ‘user led organisations’ who will now do almost anything to survive, even if it harms the people  they claim to represent..

My value in society is not being eroded by the government, which is not as relevant as Corbyn’s anti-anything army would like us to believe for people with impairmens, but by the many so-called  ‘sick and disabled’ social movements who are more prejudiced as than general public, bullying anyone who refuses to ‘pity the disabled’. They do not want equality, or inclusion, or the latest buzz word of dignity, but simply money  without accountability.

Politics is going full circle and in the bigger picture, I think we are very sadly seeing the ingredients for a new worldwide crisis. While people with impairments may have achieved many improvements in the last 40 years, I fear it is still based on the values and assumptions led by the international  eugenics movement over 100 years ago.

Does the government have a ‘carers know best’ policy?

While the public may be aware that the government inspects health and social care services through an organisation called Care Quality Commission, what is less know is that as well as full time qualified inspectors, the organisation also uses people with experience of using services to inspect services along side these inspectors, known as Experts by Experience, which I will refer to as experts.

Experts are service users and carers, where carers are family members of users, who are paid to assist inspectors during inspections as it is required to ensure the inspections are more rounded. So far, this all sounds great although there is a sting in the tail.

I have been hired as an expert myself since April last year, which is also great, although I have so far not received any work. i had half put this down to my reputation amongst other things, that was until I attended a regional training and development day last week for experts where I discovered a picture I was unhappy with.

The picture was a room filled with about 15 experts plus the ‘trainers’, this was one of 4 rooms repeating the same picture. 3 of the experts had physical impairments including myself, 1 had mental health issues and the rest (11) were carers. In discovering our experiences of the last 12 months, I found out that all the experts with physical impairments had received no work while carers seemed to have been getting 3 inspections a month! The expert with mental health issues only seemed to be getting work because they were working with their mother!

Now, call me paranoid but this looks pretty suspicious? The official explanation seems to be that experts can only inspect the type of services they have used and there are very little services specifically for people with physical impairments. And this is my concern, carers only have an ‘associated’ experience of services through the users they support, so why can’t experts with physical impairments use their ‘associated’ experience in inspecting other services?

The reality is many social care services are self-funded by families/carers to look after their ‘loved ones’, making them the real customers, so why not have a bias towards Expert carers? But carers will always have their own perspective and agenda in any issue from service users and therefore they can not automatically be seen as the voice of service users. If inspections are supposed to be about protecting the welfare of consumers/users, then there should be a bias towards expert users!

I fear this discovery is a part of a wider bias by the government towards carers over users. The carer’s movement has been very successful in providing the assumption that ‘carers save the government money’ in a way users can not match, and therefore it is clear that this may give them the upper hand when it comes to social care policy.

My concern is that many organisations are becoming increasingly reliant on carers as the voice of users individually and collectively, assuming they always have the best interests in mind, which can not logically be possible. This can only lead to bigger problems for another generation to uncover before even starting to resolve.

I am not against carers, I merely wish them to be provided the same level of trust/distrust as other stakeholders in the lives of individuals, so it is concerning when the government appears to believe ‘they know best’.

I am ‘really disabled’ and I feel pushed out of society by Labour

 

Welfare benefits for people with impairments are once again in the media with the political correct left attacking the government for not implementing changes to PIP to ensure more people with lesser impairments can receive it. The government is, in my opinion, quite right to say that in a world of limited resources that the distribution should be towards people with high needs, termed ‘the really disabled’.

I have accepted for many years that everyone has one or more impairments, and in the spirit of the social model, which has now been long abandoned by most activists, not every impairment results in social disadvantage or ‘disability’. Benefits are one (passive) solution of many that can enable people with impairments to reclaim their social inclusion. People experiencing anxiety may require assistance to build their confidence and increase their skills and tools, which a passive amount of benefit may simply be unable to deliver.

But when Labour and its associated activists continue to label ever increasing numbers of people with biological differences (impairments) as defective who should be automatically thrown on the scrapheap, the question is how does the party intend to pay for this bigoted warehousing? And this week they have provided a clue, take it away from ‘the really disabled’, people with high support needs, including myself.

People with high support needs, people like myself, do not currently have any voice in the politics of disability, which is now dominated by people with lesser impairments. Taking tablets and having stress is the new ’sexy’ disability as films like ‘I, Daniel Blake’ triumphantly portrays. The really disabled have been swept under the carpet, the property of our ‘carers’ who can do whatever they want with us because ‘they save the government money’. We are seen as naturally beyond the help of employment support, undesired by activists and user-led organisations as much as anyone else. Our rights are ironically abused and ignored in the name of our rights!

We can see Labour’s true agenda when we understand it is Labour and not the Tories who support assisted suicide, a polite way of saying the murder of people with impairments should be legalised because the quality of life of ‘the really disabled’ makes them better off dead. The public is quietly pushed to support this cost-saving measure as ‘disabled’ activists like Peter Beresford invites more debate of whether people like myself should be killed.

So not only does Labour want me excluded from society based on the same bigotry that existed in 1930s Nazi Germany, as well as everywhere else, but in order to balance the books in its promises to people with lesser impairments, it has a vested interest to implement an eugenics programme for those people with impairments it regards as beyond help.

When leading human rights activists like Neil Crowther as stated to me the needs of people with high support needs are less important than the desires of people with lesser impairments, and organisations like Scope has abandoned us for being unmarketable years ago, the divisions between the two groups are growing. Political Correctness is not interested in the appropriate distribution of resources, they think anyone who has an impairment deserves benefits to make them disappear, which means everyone basically!

Scaremongering by activists may be causing deaths, not the DWP

There has been a lot of articles written about welfare reforms and most of it is quite negative,  especially in terms of its impact on people with impairments. There is an endless supply of articles conveying shock and anger at how people with impairments did not receive the benefits that the reader is asked to assume they were obviously entitled to. I feel that rather than showing support, these articles reveal the deep-rooted prejudices that exist regarding people with impairments’ place in society.

One angle of the opposition to the welfare reforms that I have been uneasy with has been the direct link to the welfare reforms and the deaths of ‘claimants’, which has been persistently highlighted by journalist John Pring and other activists. When they are in full swing, the accusations have been that the DWP and its government ministers have been guilty of deliberately murdering claimants, a form of democide. When you get past the political posturing, their point is that the stress of the benefit assessment process can be a contributing factor to someone’s decision to commit suicide.

They may be surprised by the fact that I agree with them, but this can only ever be seen as one of many contributing factors. From unfortunate experience, I know suicide is a very complex issue, and that to investigate the reasons behind someone’s suicide, especially regarding allocating blame, you will need a full multi-agency investigation. This would include the roles of their GP, other health services, their bank, other financial services, their housing provider, their family and friends, and so on. Each agency, as well as family and friends, could have contributed to their decision and therefore it is unfair to simply blame the DWP because it is politically easy.

If these activists want the DWP to take responsibility for their contribution to so-called ‘benefits deaths’, then they also need to do the same. Many activists have gone far beyond highlighting the failings of the welfare reforms to deliberate politically motivated scaremongering, to cause harm they now blame the government for. Many activists are happy to take credit for making many aspects of the welfare reforms ‘toxic’, causing the public to assume all assessments are wrong (if found not in favour of the claimant) regardless of the evidence.

For a virgin claimant who is fed a diet of hostile left-wing propaganda and scaremongering, they are going to expect the worse before they even started. This can cause them to go one of two ways. The first is they will approach the system with a chip on their shoulder causing the assessment staff to respond in kind, making the whole process less pleasant for everyone. The second is the unproven claims of total systematic breakdown causes them a lot of unnecessary distress and upset, resulting in them considering suicide. Therefore, is it not time that the spotlight was placed on the role of activists in ‘benefit deaths’ that includes the role of opposition political parties? This is the real scandal!

The saddest part of all this is that in trying to put all the blame on the government for ‘benefit deaths’, these activists are not looking at how as leaders of people with impairments they have a responsibility to support other people with impairments who are experiencing emotional distress to avoid suicide as the answer. The blame game can only lead to a hollow victory if it is not improving the mechanisms of suicide prevention.

I will remain a service user until the day I die

Because I have cerebral palsy, I have required social care support since I came to University in Coventry in 1992, and I will continue to require support until the day I die. While my needs may fluctuate, my general requirements will remain unchanged. These statements sound too obvious for an article although it is important to understand the emotional significance this has for myself and others.

So let us imagine at age 42, I have another 40 years to live, what could happen in that time? We are going to have 8 government administrations, 20 care ministers, 4 major reforms of social care that will change very little, and countless new ‘initiatives’ to keep everyone busy doing the same old thing. I am likely to have 20 annual reviews (as they are never done every year) from 25 social workers (yes, I can count!). I will be involved in 35 local government consultations from 12 directors of adult social care about cuts, and I will read 4281 news articles that will say everyone like myself will end up in residential care!

Meanwhile, my support package will be remaining pretty much the same despite it being called something new every few years. I will most likely still be employing a personal assistant, and hopefully still having live-in volunteers. I am likely to be the stability within an always changing social care system, outlasting every social worker, politician and social care policy. I will not be assessed because my needs have changed, but because the system has changed!

I have been trying to find an analogy to describe the total invasiveness of having social care, including the assessment process, to people who have no experience of being a lifelong service user. I have not so far been able to find one and this is a problem, as those in power will never be able to understand the impact of their decisions on people like myself, and the fact we are going to be here far longer than them.

When I have an assessment about my needs, the social worker is merely interested in what I need at that moment in time, while I have to considered what I require for the rest of my life. This makes the stakes high and while I can find these assessments a stressful time. It is also not just about receiving the support I require, but also that my personal assistant is dependent on myself for their livelihoods. Like in the movies, I am able to cope physically and emotionally with harm to myself, it is the harm to people I am responsible for that I find more difficult.

The fact I already have 25 years experience as a service user as well as being very involved in social care policy means that I know much more about what should be happening than the average service user and social worker. Also, it is unusual for someone with my level of needs to be working and have such high expectations from life, making it hard for those assessing me to understand my situation. I always try to start an assessment with an open mind and not going heavy on ‘do you know who I am?’,  but when assessments are not going the way they should, the natural control freak within me has to take over to ensure I get what I need and what I am entitled to.

Being a service user is something that I will never be able to escape from, there is no retirement plan from either managing my own personal assistants or being assessed by the state. My only escape from the never ending and often thankless role is my death, which will hopefully be many years in the future.

Insulting my mental health is not the answer

I hope that I am a person who can enjoy and contribute to a healthy debate. I believe that if I do not understand or agree with someone, I would try to break down the issue to establish the heart of the matter. I hate when people make sweeping statements and are then unwilling and unable to explain them further.

Twitter çan be a useful forum for intellectual and stimulating discussion, but it can also be a platform for aggressive soundbites, close minds and collective ranting. I often read tweets where I simply despair at trying to understand if the author is fully aware of the consequences of what they are saying. And this can lead to fits of ‘twitter rage’, where my general stress and anxieties are released and focused on this stupidity my mind at that time can not compute. I am very aware this fits of rage are a bit of my mild bipolar and something I keep an eye on as a sign of my level of overall stress.

Going back to an assumption of calmness, I do like to challenge people on Twitter, especially those who I feel have flexibility in their viewpoint in a way I believe I have. When I read a tweet I find contentious, I have got into the habit of checking their profile biography before responding. If this biography appears aggressive, then bitter experience has led me to conclude that it is probably best to leave them to their rants as a rational discussion is unlikely.

When I challenge people to understand my perspective by building a pathway to my thought process, I expect them to do the same, trying to win me over to their understanding, which is always possible if my understanding of the situation is improved by the discussion. However, we live in an era where rational debate as been replaced with ‘post-truth’ and aggressive posturing. And this means the response to my challenge to their viewpoint is to insult my mental health in one or other ways.

I am not an over-sensitive person, who is used to criticism and hostile response, but I am getting concerned at even amongst other people with impairments that insulting my mental health is used as a means to discredit my viewpoint whether they are aware that I have mental health issues or not. Terms like mad, crazy, irrational and so on are used to simply close down the discussion. I have too often been told publicly that I need to ‘seek help’. And when I picked people up on their disablist insults, it is dismissed as an overreaction.

If someone communicates with me in a manner that is out of character for them, I tend to wonder if they are currently experiencing something stressful or distressing in their lives which is manifesting in the way they are discussing issues and make allowances accordingly, as well as asking if they are okay. While I may wonder if someone is experiencing difficulties with their mental health, I see it in terms of what support I could provide, not an opportunity to close down a discussion.

In an era where hate crime, bullying and other abuses towards people with impairments are supposedly receiving public recognition, why are many people with impairments, including apparent leaders against hate, are still using mental health to insult other people? I have no problem with people disagreeing with me but I find their need to discredit my sanity unnecessary. I further find it unacceptable when they say I am over-reacting about how what they have said has made me feel, which is the trick of any bully.

People demand that I take account to their ‘invisible’ impairments but when I ask for the same respect towards my own invisible impairments, I am often further insulted. It is this hypocrisy and double standards that lead me to question the credibility of ‘the disability movement’. If you are unable to clarify your viewpoint without insulting the other person’s rationality, is it really a viewpoint to be trusted?

 

 

How do we make including disabled people ‘fair’?

In the context of this article, inclusion can be seen as the activities that are required by state, society and individuals to assist people with impairments to fully participate in all of Citizenship including employment, leisure and family life. This will include removing environmental barriers, changing behaviours and practises, and enabling and empowering individuals to grasp the opportunities available to them.

There is nothing controversial with this until you start to look at how and what resources the state and others are able and willing to provide to achieve inclusion. My understanding is that most disabled activists are demanding what they define as a ‘human rights’ approach to the problem, which appears to argue that it is the legal right under international law to have inclusion as they define it regardless of how much it costs.

It sounds great, but I fear it is an approach that fails to acknowledge the responsibility of participation. The notions of human rights, defined by a post-war society to avoid the horrors of world warfare,  have been stretched into something quite vague. The right to independent living sounds great but since the concept of independent living is in the eye of the beholder, it becomes the right to anything they want or demand, without any ability to challenge, which has always seemed unfair to me.

We live in a world of limited resources that need to be shared with everyone in a manner that is complex. This means no decision by anyone that involves resources can not ignore the nee to consider its wider consequences. And therefore we have to rely upon the concept of fairness to avoid selfishness. I know this sounds like the beginning of a justification for public spending cuts or some extreme restrictions on the rights of people with impairments, which it is not, as I am merely interested in what are the building blocks of fairness.

The inclusion of people with impairments into society can not simply be a nice thing to do, but something that benefits the fabric of society. Therefore inclusion has to include the right and ability to take due responsibility for people’s place in society equal to everyone else. And I fear that the rights agenda have ignored this point as well as the imperfections that goes with being fully included.

No one likes an out-of-order toilet on a train, but it is, however, a part of the reality that comes with inclusion.  No one has the right to a perfect life, and being included means being subject to the imperfections of life as much as anyone else, as this is what makes us human. Fighting for a better standard of general service compared to others, outside the realms of discrimination, because of ‘disability, is actually a call for special treatment and exclusion.

I hate the term fairness because it is often so vague, but it is a term we need to work with. In delivering inclusion to people with impairments, I believe it is right to ask difficult questions to see if it is reasonable or not for people to expect specific things beyond the current level generally agreed. Should I have a computer supplied to me as I can not write despite the fact they are now the norm? Should the state pay the costs of taking my personal assistant on holiday? These are the questions that will never have simple answers.

Fairness is a term everyone is happy with until it applies to them, but it is a term that must apply to everyone for the inclusion of people with impairments to work.

Disabled people need a Plan B-Z when they travel

Like everyone else, I was concerned to read about the difficulties faced by out-of-order accessible toilets on a train, and the now infamous incident at the start of the year was certainly something that warranted a strong complaint. However, I did feel the media did take it too far, once again using it as an opportunity to portray people with impairments as vulnerable who need to have a level of impossible perfect accessibility before they could consider being included in society.

However much we should never stop campaigning for a more accessible world, people with impairments also need to be prepared for the world we currently have, a world that is not always perfect and is in many areas unlikely to be perfect for many years. I have just come back from a cruise on Thomson Celebration going around the Persian Gulf from Dubai. This is my second cruise, where my first one with Royal Caribbean, around the Caribbean, was delightfully accessible around the ship and at every port.

Like before, I took my electric wheelchair this time, which was absolutely fine around the ship. The difficulty was that every port required using some kind of transport that was inaccessible to my bulky and heavy chair. I was not phased by this and from a desire to go on a city tour by coach on the first day, including going up Burj Khalifa, the tallest building in the world, within a few hours I had borrowed a manual wheelchair from the ship that I kept and used throughout the week. The staff at all levels on the ship could not have been more helpful despite the clear environmental barriers the cruise had.

When I asked about the wheelchair at reception I saw a large Asian family complaining loudly that they had been ‘promised’ an accessible room for their wheelchair using mother and ‘what were they going to do about it’, where the response from the very apologetic steward was there was not a lot that could be done at that stage. I could sympathise with their circumstances but many years of travelling have taught me that once you leave the UK, the one so many activists are happy to berate for its accessibility, you have no guarantees of anything in relation to accessibility, especially when you go in a country where the concept of liberalism is allowing women to drive for the first time!

I did not book an accessible room because I knew so long as I  could get my electric wheelchair into my cabin and I could charge it, I could manage the rest for one week. However, as soon as I arrived, the staff were very helpful, including the customer services manager, who came with me to my cabin to check it was okay and I had everything I needed.

I know that as someone with a significant impairment when I travel aboard I need to lower my standards on accessibility and accept things are likely to not be perfect. This means for every activity, as simple as getting on a coach, I need a Plan B, C, D and so on. There is little point huffing and puffing about how wrong it is when you are in a very different culture, which I personally just want to experience. So the adventurer with a significant impairment needs to put their pride and sometimes dignity aside as many wanted and unwanted hands assist them to overcome barriers like stairs in places where the concept of accessibility is many decades away.

I have discussed this preparedness before and some people have argued it is defeatist, putting the problems of society back onto the individual. It, however, depends on your attitudes to new opportunities that present challenges. I am prepared to compromise and have my backup plans in order to experience the many wonderful experiences the world has to offer, which are not yet fully wheelchair accessible, but why should that stop me?

What is the purpose of Social Care?

In the first of a series of articles focusing on social care in 2017, I want to start at the beginning and ask the question of what is the purpose of social care? In all the many discussions I have seen since before the Care Act have never asked or answered this fundamental question, which I believe as added the current problems we are facing.

I fear most people see the purpose of social care as simply ‘looking after the vulnerable’, which is quite a disheartening viewpoint as the term vulnerable shows a lack of respect for people with impairments that includes older people. On a policy level, the purpose can no longer afford to be that simple and ad-hoc. It worked when social care was a smaller concern but with demographic and other issues, social care has now grown to a point it is having an existential crisis.

I would like to propose that there are two main goals in social care; preventing people from going backwards in their general wellness, and supporting people to move forward with their own goals. It is inevitable that financially the first goal of not going backwards will take priority and can be agreed upon in every context. The bottom line is social care is there to prevent people with relevant impairments from physical and emotional neglect that could result in poor health, injury, harm and ultimately death.

While this goal is often criticised for not being founded in the realms of compassion and dignity, it is what it is. The big question is what exactly constitutes social care as opposed as any other solution in preventing people from experiencing harm. Everyone needs food to stay alive and it is easy to see this is a welfare issue as oppose to social care. We can see if someone needs help with feeding physically than this is social care, but what about if someone refuses to eat as their main condition? It is currently very hard to establish what makes social care social care.

I feel as my personal assistant pointed out to me once, the notion of impact is important to determine whether a request for social care is financially sustainable, a concept that has to be applied to be fair in a world of limited resources. I had a discussion with someone who believed it was awful that people who could not do up buttons had to where tracksuits as it was an issue of dignity. My opinion is that unless wearing garments with buttons is a requirement of your employment that could therefore be at risk, we live in an era where buttonless clothing is the norm in a informal setting. A difficulty in doing up buttons in isolation to any other difficulty is not going to cause harm and could result in a call for people who can not open jars to receive personal assistance!

The second goal is more in the realms of independent living and one that is harder to define. I believe that we all have ‘next steps’ to reaching our full potential and that people’s impairments can add difficulties that social care solutions can overcome. I believe in deciding what is reasonable additional assistance in terms of social care, it is important to compare a person with impairments with a peer without impairments in terms of socially and culturally relevant opportunities and experiences. An example would be I believe it is reasonable to assist someone in their 20s to go backpacking across Europe or the World because their peers are likely to be doing the same.

This is just a brief start to what is a complex issue that requires exploring as part of any reform to the social care system. I believe if we are able to properly define and universally agree on this and other questions, then we can go some way to solving the social care crisis.

Has 2016 been a good year for disabled people?

In considering if 2016 was a good year for people with impairments, my overall conclusion would be probably not in the context of my commitment to full and meaningful inclusion of anyone with an impairment as contributing citizens. I would like to propose three examples that demonstrate that while many activists and campaigner have celebrated them as a victory, they show my concern at how inclusion values are being devalued and undermined.

I feel it necessary at this point after being criticised recently for not providing credible evidence in my discussions and therefore accused of not being able to enter into a ‘rational’ debate, to clarify my positive. This article, like any article I have ever written, and indeed, most articles people write, are merely my own opinion based on my values and observations, simply intended to be a contribution to the wider ongoing debate on various issues.

My first example is the position reaction to the ending of Employment and Support Allowance reassessments for people are deemed to have an impairment label where it is ‘pointless’ to reassess them in the future. The people who are going to be on this list of exclusion have not yet been confirmed or clarified although I regard it with complete suspicion and concern. While I do understand how the government has been pressured into a significant compromise to those who argue for exclusion, I can not stop myself seeing parallels  with the value judgements made under the 1930s Nazi regime. And just because it is not politically correct to make the comparison does not make it true.

The second example is  the ‘I, Daniel Blake’ film which has become to the left wing movement a symbol of the modern day oppression  faced by people with impairments. My concern is not necessarily with the film itself, as I have only seen the trailer, and understanding the artistic license needed to tell a good story, I do have an appreciation for the film. My concern is that many people believe it shows a mainstream experience faced by all people with impairments, pushing the cultural centre of disability towards people with chronic illnesses and away from people with significant impairments. A comparison to this could be  if race issues in the UK were only framed in terms of relations between English and Scottish people, ignoring all other racial groups. It will still be a valid issue although it would be ignoring so many other issues.

My final example is the United Nations report on the UK Government’s supposed ‘grave and systematic’ violations of the rights of people with impairments. Even my strongest critics have conceded that it has been unhelpful to the validity of the report that the report offers no evidence to support its findings. It has been hailed by anti-cuts activists has a huge victory for their agenda and their vision for people with impairments that is simply based on passive social security. The report is an indication of how the individuality of people with impairments is being undermined by a collective utilitarianism where so long as the government is seen to look after us as incapable beings then our rights have been achieved. The perception of the collective rights of people with impairments is making the issue comparable to animal rights, and I find this very concerning.

I understand few other activists are going to agree with my assessment, which is almost opposite to what they are likely to argue themselves. I am however not looking to be popular, or interested in short term personal gain as I am more than happy and confident to let history itself decide if 2016 was a good year for people with impairments.