Empowering People With Impairments Towards Inclusion

An exploration of the current status of people with impairments within British society, specifically those with significant impairments, as well as the psychological and sociological meaning of inclusion and how it can be practically achieved for real people in real situations from a lived experience perspective.

Good afternoon everybody, and as you should already know, my name is Simon Stevens, and I am going to talk to you about empowering people with impairments towards inclusion. Because I have a speech impairment, I have decided to pre-record my speech via my computer so you can fully grasp the concepts I am presenting.

I think before I begin it is important that I should properly introduce myself. I am an independent disability consultant who has been in the field for over 25 years, and I have worked with almost 200 organisations of all sizes in one way or another. I am very vocal about my views on a range of issues and with my articles in the Huffington Post and other publications, and I am not afraid to be controversial when my views differ from others.

Lets now start at the beginning by defining what I mean by inclusion in the context of this presentation. Inclusion can be seen as the process performed by individuals and society together to enable someone to be a fully contributing member of society. Empowerment can be seen as the activity of supporting individuals to have the skills and confidence to perform specific activities. Therefore I am discussing how people with impairments can be enabled to become fully contributing members of society.

I am coming to the issue as someone who feels they are fully included in society as far as possible, through my own determination and hard work. I am therefore assuming that with the right assistance from the state, and a desire from individuals, that inclusion is a real possibility for everyone, as opposed to a goal for the future designed to be unachievable.

I think it is also important that I explain why I believe inclusion is important when many people with impairments appear to be happy with their lives. For myself, history will show that the way society systematically excludes people with impairments is simply wrong in the way we understand that the slavery of black people was wrong, or that not giving women the vote was wrong. Society as a whole may find it impossible currently to imagine a world where all people with impairments are fully included but it will have enormous benefits for the rich fabric of society.

I believe that before 2010 the idea of inclusion as well as supporting people with impairments into employment was regarded as uncontroversial and mostly universal; among activists within the disability movement. Since 2010 and the Government’s welfare reforms, the disability movement has radically changed its membership and agenda to primarily focus on protecting welfare benefits, with the message that people should not be found wrongly fit for work, so leading to an implied support for exclusion. I do not believe attitudes have changed to become more negative, but that existing negative attitudes and prejudices towards people with impairments have been uncovered and brought to the surface, which we now need to deal with. This has undoubtedly made the process of empowering people with impairments towards inclusion more difficult because there is less encouragement from society.

The first element that is required to achieve inclusion is a willingness and desire from individuals with impairments. Like with anything, if someone does not want to be included in society, the process becomes much harder. It is also about being honest when someone shows resistance with phrases like I want to work but…. . This is where we should identify and challenge the barriers people have placed upon themselves. They may rightly not regard paid work as the primary purpose, but they may want the increased income that paid work could provide them.

The role of inclusion should be about empowering people to work towards their larger long-term goals. This can be achieved by breaking their journey into smaller achievable concrete goals that attempts to remove the barriers in their way. It is about their own specific journey as oppose to everyone else’s.

The short time we have here does not allow me to go into great detail about how to implement inclusion although my key point is that while society wide policies are important, the focus should be on supporting the journey of the individual, removing each barrier one brick at a time.

I now wish to spend the rest of the time we have by providing you with the opportunity to ask me questions on what I have discussed, or indeed any other disability related issue. I also invite you to visit my website at www.simon stevens.com . And you can also purchase a copy of my life story at www.balsy.me. This speech will also be online at 1pm today. Thank you for listening and who would like to start?

If you call me vulnerable one more time…

It is rare for the media to be talking about people with impairments without referring to them as being vulnerable, especially in terms of being part of ‘the most vulnerable members of society’. I would argue their use of the terms in a strong indicator of the general deep rooted prejudices towards people with impairments, more than any support for welfare reforms. However, rather than rejecting the use of the term of the patronising nonsense it is, many so-called ‘disabled’ activists have used the term in its intended meaning to justify the campaign against welfare reform.

Vulnerability is a state of being where someone is at greater risk of harm or abuse. Anyone can become vulnerable at specific times for specific reasons. An example would be that women more than men may be more vulnerable walking home alone at night because they would be less able to defend themselves physically if they were attacked.

Where there is a vulnerability, there is an opportunity to reduce it through changing behaviour and having ‘active’ safeguarding procedures in place. A woman may decide to ensure she chooses a route to walk at night that is well-lit and not too quiet. This means that vulnerability can be seen as a moment by moment state of being that is highly dependent on the situation.

So it is factually as well as morally incorrect to portray people with impairments as being naturally vulnerable every moment of their lives. It is a portrayal that denies them the personhood and respect other people are afforded. While many activist claim the media is portraying people with impairments as benefit scroungers, a claim that appears increasingly to have been manufactured by these activists themselves, its impact on personhood is far less significant. The label of a benefit scroungers indicates an assumption of personal and social responsibility that being vulnerable does not. I would therefore prefer to be unfairly be labeled as a benefit scrounger than being vulnerable!

I fully acknowledge that I can be truly vulnerable at times for a whole range of reasons. But I also know that when I am writing an article, email or tweet. where the written word is my preferred weapon of choice, those who are on the other end are in the vulnerable position since they have to squirm out of the questions I am asking. Any person with impairment can be vulnerable to abuse, but they can also be an perpetrator of abuse themselves.

The V word, vulnerable, should be as seen as offensive, divisive and politically unhelpful as the N word. People with impairments need to stop being the pawns of welfare activists and politicians, who compare as to the welfare of animalos when they endlessly label us as ’the vulnerable’, making us the ‘other’ of society. Our personhood, the ability to have rights and responsibilities, is ignored as we are simply used for politicians and activists to score points from each other like school children.

This is not a new problem but it is a problem which has become far worse since 2010. This is not because of the actions of the government, who has a more positive view of people with impairments, but rather than actions of many disabled activists, who have taken attitudes backwards with their attempt to keep as many people with impairments on benefits, sometimes unnecessary, as possible. I do not know where this is heading, but I am tired of being called vulnerable for the sake of others.

Beware of user led organisations

 

A user led organisation is an organisation which has been set up by users of a specific section of society with a specific location whether that be ‘disabled people’ generally, users of a specific service, or have a specific impairment, with the intention of representing users on various issues or providing user-led services to local users. While the majority of the trustees of the organisations will be users, the organisation’s staff and volunteers may not be users.

User-led organisations can use their unique selling point to jump to the front of the queue in terms of tendering for user-involvement work as they can be regarded and see themselves as top dog, but I would like to question whether this assumption can always be warranted. There are two concerns I wish us to consider.

The first is that being a user of specific services or a member of a specific section of society that can not always mean you know what all other users desire and think, and we all have different wants and needs, as well as opinions. The trustees of any organisation will have opportunities and privileges that will ensured them to reach their position that many users may not have. So the question is can any organisation made up of individuals with differing viewpoints throughly be considered as able to represent a wider proportion of people?

The second concern is that when any organisation begins to employ staff its agenda and objectives will change as its moves from a collection of individuals brought together as equals with a common goal, to a single legal entity with a responsibility to survive for the sake of the livelihoods of its staff. This means that the core objective of the organisation may move from doing good to simply surviving for the benefit of its staff. This means that the decisions taken by the organisation may move away from the best interests of users and towards ensuring its survival by following funding opportunities that do not necessarily fit into the original aim of the organisation.

A final point is I feel many user-led organisations have found it easy since 2010 to fall into blindly endorsing the anti-government rhetoric of the new sickness and disability movement without making any kind of considered opinion based on rational understanding. They will easily adopt the medical model messages that see disability is just a welfare issue, that it is about looking after the naturally inferior, because it looks politically correct. This replaces the social model thinking around the inclusion of people with impairments that was fashionable before 2010.

Therefore it has to be questioned as to whether user-led organisations assist users or are merely dependent on user’s dependency on them to survive beyond their original intentions. These organisations were created to be a fresh start for the representation of users against more oppressive family and professional led organisations, but have they now become corrupted to be the oppressors to a new generation, those who use social media to organise themselves?

So when you encounter an user led organisation, it is important to look beyond their rhetoric and towards their track records on how they really represent and empower users, as opposed to simply doing anything to survive regardless of what is in the best interests of users!

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!