Inclusion

Choice and Control and what else?

 

Choice and control are often regarded as key goals for people with impairments to achieve and they have been key campaigning issues for the independence living movement for many years. While I agree that choice and control are important to the process of inclusion, they are only a stepping stone to the real outcomes we wish to achieve. There is little point having choice and control if it is not used to achieve a greater outcome.

Choice and control is both a right and a responsibility we have as citizens of society. There is no such thing as free choice as every decision we make has consequences in one way or another. The choices we can make in the real world will be restricted by a number of factors including time, resources, required outcomes like having food or the impact on others. While I do not sign up to the idea of good and bad choices, as that is a decision we must make for ourselves, some decisions we make will have negative consequences for ourselves and others. Sometimes we are faced with having to choose between two or more options that all have negative consequences to some degree.

I believe the choice and control rhetoric of the independent living movement faces the same problems that is related to the disability sector, which is a low expectations of what people with impairments can and should achieve. While many professionals in the field have claimed to have embrace choice and control, I believe they have tried to manage choice and control by ensuring the users of their services appear to have they illusion of choice and control. In offering their uses ‘safe’ choices that have little consequences, they can make users feel good about themselves, and tick the box, without actually achieving anything.

I am the kind of person who wants to see choice and control for people with impairments to be taken as far as it can , so everyone can have the full autonomy that I enjoy, with all the ups and downs. The problem is I believe the choice and control of people with impairments, particularly those with higher support needs, are restricted by many factors including the influence of their family and the staff around them, a poor education, and fundamentally a system of services that requires them to stay disempowered and therefore unable to make meaningful choices.

The expectations of the choice and control agenda has to increase and become focused on achieving meaningful outcomes. I have lost count of how many youtube videos I have seen where individuals with impairments are celebrating they have choice and control in a manner that shows they still lack full autonomy. I believe we should instead be celebrating the achievements people have made in diverse ways because they simply used the choice and control they have. Choice and control should become so normal and everyday to everyone, it is not something we need to celebrate.

What the hell is Inclusion?

Now I have reframed my job as an inclusion consultant, I thought it was important for me to properly explain what I mean by the term. While inclusion is often used in terms of the education of children with impairments, I am using the term to relate to providing all people with impairments an equal footing to their peers in accessing all areas of the community and wider society.

I am therefore defining inclusion as a policy, enacted by organisations and governments, that provides measures to ensure all people with impairments can meaningfully participate in the activity and services provided on the same basis as their peers. Inclusion can be achieved by removing physical and practical barriers, makes changing to policies and practises that cause additional barriers, providing specific promotions and support aimed at specific groups, and a willingness to go the extra mile in improving the smallest things that make the biggest difference. Inclusion can also cover cultural relevance, ensuring people with impairments can see their various stories being portrayed in marketing and advertising.

Inclusion can be seen as a social policy, for local and national governments to enact, with the goal of providing meaningful access to public services, education employment and other activities in the same way other citizens could expect. Inclusion can also be seen as a commercial policy, the activities of organisations to ensure that their products and services are available to as many people as possible so that they are as profitable as they are able to be.

This means that inclusion is not simply an act of kindness, or something that is morally right, but someone that makes economic sense for governments and organisations alike. For governments, the meaningful inclusion of people with impairments into all aspects of society, particularly in terms of employment, can reduce dependency on costly disempowerment services like day care services, that are currently designed to guarantee exclusion. For organisations, people with impairments are often an untapped customer based, paying customers who will spend at the place they find most easiest to use as well as somewhere that offers them respect,

The key to inclusion for myself is that it must include every person with an impairment regardless of their level of impairment or their background, and this is where a degree of faith is required. While the needs of most people with impairments in their inclusion is easy to understand, we are still learning how to support people with some impairments, and this is where the need for a consultant comes into play. It is why role to move inclusion to the next level, and the level after that, to ensure the science and theory can go further in the never ending goal of full inclusion for everyone.

Inclusion is my passion and I now intend to share this with as many organisations as I can, or rather those who are willing to pay for my time and effort so they can reap the rewards. If you are one of those organisations, please contact me so we have a discussion.

We should push disabled people to achieve their potential

It is often said generally that it is wrong to judge people with impairments, or indeed anyone else, solely in terms of ability to do paid work as the method of contributing to society. While I completely agree with this, I also feel this should not be used as an excuse not to push people with impairments to reach their potential. This means that paid work should not be simply ruled out because of assumptions made about what someone with specific impairments can or can not do.

We also need to be honest about the fact many people with impairments will not see paid employment as their central purpose in life, which is perfectly normal. For those who do not regard paid employment as their calling, the lure would be the income it provides them to enable other aspects of their life. Being dependent on benefits as the sole method of income can only ever afford people a level of poverty in comparison with others.

What appears to be broken is the desire of have an improved quality of life, and society’s willingness to afford this ability of betterment to all people with impairments. The focus of many welfare activists is to assume that paid employment, in all its many forms, is outside of the possibilities of many people with impairments, and therefore the focus of the state should be to provide them with a comfortable level of acceptable poverty as people excluded from the rights and responsibilities of mainstream society.

This low expectation of the contribution of many people with impairments is without doubt discriminatory, despite the fact it is currently positively framed in terms of human rights. Those who wish to push people with impairments to achieve their full potential are accused by welfare activists of labelling them as ‘benefit scroungers’ as a method of discredited the inclusion into paid employment. It is disheartening when the United Nations has ruled against the government’s efforts to support more people with impairments into paid employment, arguing it is their legal right to be thrown on the scrapheap, and labelled as worthless!

We should have the same expectations of people with impairments as we have for everyone else. If paid employment is not the end goal, than it is the means to enjoying other aspects of life. It should not be a case of wanting to work, but more about having a responsibility to work, and reaching your full potential. While I am aware that the practicalities of doing this is not fully in place currently, we should ensure that the right attitude exists, which I believe is not the case.

While it is the responsibility of individuals to achieve their potential, it is the responsibility of society and the state to support individuals to do this. The start of this happening is an unconditional belief that everyone has something to positively contribute to society. The problem is that in terms of people with impairments, this simply does not exist, and there is little encouragement for it to exist. I do not know of any other activist or organisation, other than the Government, who is willing to proudly state all people with impairments have a contribution to make. This fact shows the real prejudice people with impairments face in 21st century Britain.

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.

Has Labour lost its natural friendship with disabled people?

On my wall I have the back of one of my business cards signed by Tony Blair (in Blue) and the late Tony Benn (in red). I got their autographs at a lobby for Roger Berry’s Disability Rights Private Members Bill in 1994, which failed but it was the start of a whole raft of legislation improving the civil Rights for disabled people.

The mid-1990s were an exciting time for a young disabled person as I was, and Labour was making a lot of great promises to improve the inclusion of disabled people, which they actually delivered during their 13 years in office. Even in the 2010 General Election, it was clear to see Labour was the natural friends of disabled people, but then things started to change.

Five years on and the Labour Party is a very different beast in every respect. After failing to win the last general election with a poor facsimile of Tony Blair, like a wounded animal, it now appears to be going into a long period of rage against the general public as it turns left for inspiration, ignoring the fact we all went right. I fear whether or not Jeremy Corbyn wins the leadership race, the damage has already been done as Labour’s credibility is diminished.

And what does this mean for disabled people? Well it seems Labour has abandoned most of us. It narrowly sees disability as a welfare/employment issue for those who see themselves as sick and not disabled, except when they want to be disabled to get benefits. Those of us who require support and assistance are ‘helped’ under the label of ‘helping unpaid carers’, basically leaving us at the whims of our families, who have the real choice and control. And any kind of meaningful independent living and inclusion remains only accessible to those who shout the loudest, like myself.

The party’s message seems to pander to those who perceive themselves as unfit for work as a right, with negative and destructive language that should have been stamped out years ago as I am labelled as ‘the most vulnerable’. And in the background, we have Labour’s covert support for Assisted Dying, with both Shadow ministers dealing with disabled people showing their public support to allow us to ‘choose to die’.

In recent months I have encountered the left’s attitude to the meaningful inclusion of disabled people, which has to include employment in its widest meaning. I have been told that my values of inclusion are in fact neo-liberal slavery and as Kate Green MP put it bluntly ‘work for disabled people is a punishment’. So what do they expect me to do with my life? The problem is they don’t want me to do anything. This is the rhetoric of Corbynism and the greatest threat to many disabled people for a century.

Those on the ideologically utopia left of the party are pushing those of us looking forward towards the Tories. If we are abused as we were Tory by the left, we will end up believing them. Disabled people are only now welcome in the Labour party if they support their destructive exclusion rhetoric, where moral superiority overrides any open debate. Anyone in the Labour Party who believes everyone has a contribution to make to society without exception is now routinely burnt at the social media stake, since they will only tolerate people who pity disabled people, seeing social warehousing in the name of dignity and compassion as the only solution that can be offered.

Labour is no longer my natural friend, and it needs to work hard to deserve my friendship again. While many left wing ‘disabled’ activists (most of which were not active before 2010) will still argue Labour is the party for all disabled people, I believe the silent majority of disabled people will feel abandoned by them.

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If you like what I say, have a look at my website at http://www.simonstevens.com or follow me on twitter, @simonstevens74

This is the moment that matters

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If there is a time in British History that mattered for disabled people then this is it! The battle between welfare and inclusion, a medical model approach or a social model one, and between the past and the future is clearer than it has ever been and the issue is set to become clearer. if the welfare reforms have done anything then it has brought the prejudices towards disabled people by the welfare activists to the surface for everyone to see.

 

Before this time, the concept of inclusion as a goal was publicly unchallenged out of a desire of political correctness for a whole decade or two, but that does not mean everyone deep down believed in the full inclusion of disabled people. Now, in the name of welfare, those who oppose inclusion have found a voice and ability to justify themselves in terms of protecting the vulnerable, a misuse of the concept of hate crime to frighten people back into institutionalised support, as well as scaremongering over supposed poor ‘rushed and impersonal’ care services and unfounded poverty.

 

It looks like welfare campaigners have seized the moment but they have merely gained a voice, and it in now time for the inclusion activists like myself to gather evidence and plan the next stage of the battle as people realise it is time to pick sides, and those who commit to both have in reality committed to neither.

 

This is the moment that matters for disabled people and I hope it will be the moment where the welfare agenda made way for the inclusion agenda to ensure all disabled people are seen as fully contributing members of society, not just objects of pity.

 

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  

 

I live ‘Changing places’

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For those for you who have never heard of them,  Changing Places are the next generation of disabled toilet, specially designed for older children and adults who use nappies and need to be changed by other person. The facilities include an adult sized changing table, hoist, large hygiene bin and so on. I have watched the concept grow steadily over the last 15 years as more and more places install them, reflecting the changing demographics of disabled people and increased need for them.

 

For me, the fact Changing places does not receive the level of attention in the mainstream media reflects those people with significant impairments are left off the agenda. It was not discussed at the so-called national disabilities conference since the focus was just social care and welfare reforms, as the term ‘disabled people’ has been exploited to just mean a benefit claimant or social care user. For those with more significant impairments, there are far more basic barriers to confront on a daily basis where so many solutions, other than compensation cash or social care, which can make the difference in people’s lives, including Changing Places. 

 

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  

 

A wellness and inclusion agenda

I would argue that Wellness and Inclusion can be the two themes which social policy needs to focus on to achieved a positive future for disabled people and everything. For me, wellness is about supporting people not to go backwards to their journeys of life while inclusion is about supporting people to move forward.

In the context I have produced a manifesto of what I feel the government should do to improve life for disabled people and others which can shown here. Covering 15 topics with 75 recommendations, the manifesto contains a wide range of real suggestions which takes into account the economic climate.

I would welcome feedback on what you think as I slowly try to get this endorsed by a number of organisations.

If you like what I say, have a look at my website at www.simonstevens.com or follow me on twitter, @simonstevens74

Has Inclusion been put on hold?



I believe inclusion in the widest sense is my goal as an disability activist. For me, it is about removing the barriers of disability so people are impairments can as equal life opportunities and experiences as anyone else. It is not a right but a responsibility of everyone.

The fact is I fear the user led charities, the wider disability charities and the old and new disability movements have either forgotten this or chosen not ignore inclusion because it does not suit their survival. True inclusion would mean a total mainstreaming of services other than those which are impairment specific and therefore would mean there is be no reason for them to exist in their current form.

This is supported by a refusal by many disabled people to take responsibility to achieve the inclusion already within their grasp, preferring not to move from the exclusion they have been so comfortable with. I therefore fear the wider inclusion agenda is on hold as new reasons not to feel included have been created, like hate crime.

I feel full inclusion is still achievable and will be achieved when real disabled people are ready to reclaim their issues from those who seek to abuse them.

If you like what I say, have a look at my website at www.simonstevens.com or follow me on twitter, @simonstevens74

The sick’s dislike of disabled people


I have been carefully observing the language that is being used about disability and the welfare reforms. Now I am coming to conclusion that there is a dislike of disabled people by many people who are ‘sick’. 


I define someone who is sick as someone with a long term condition that may have had an initial period of instability where someone was unfit for work but is often management in the long term where no social care support is required. Despite the claims the government is targeting disabled people, the reality is these are the people in its sights, people who have managed health conditions.


Now as a result, people who are sick, who often described themselves as people with hidden impairments are often often obsessively jealous for disabled people who look the part, accusing them of having it too easy and I am often been called ‘luck’. It totally ignored the everyday discrimination people like myself face and the fact unlike them, I can not turn my impairment on or off when it suites me.


This dislike is of course on top of the medical model prejudices sick people will both internalised and put upon disabled people, expecting disabled people to feel as negative about themselves as they do. So as they assign themselves to the scrapheap, they also assign everyone they perceive less able than themselves to the scrapheap as well, and then they wonder why I may have an issue with them!