We Must Expect More From Disabled People

I think one of my biggest frustrations with society in terms of disability is the naturally low expectations the public has for what disabled people can and indeed should achieve. While everyone talks about the equality of disabled people, the reality is we are perceived as inferior beings, less capable of achieving what most people want in life. I am often asked about aspects of my life, like if I like to go out, as if I was a child, and these are by my non-disabled professional peers who apparently know I am their equal.

An example of what I am talking about is the recent news about the supposed plight of James Sleight, a young man with Downs Syndrome, who went to a mainstream school, and is apparently being evicted from ‘his home’. His home is in reality, from what I can understand, a residential group home, a care service he is not a tenant of, where the one achievement that has been highlighted is the fact he lives with a flatmate of his age, who will be another service user who neither of them would have had a choice over. And now because his family are upset, we must all sign their petition to keep him in a service that we do not even know he is happy about. The media seems not to be interested in his quality of life, his aspirations or his goals, but just what his family wants. The most shocking comment I read was in The Independent, which implied he was too stupid to know who David Cameron was, despite wanting to meet him, or was that his family?

I have personally fought all my life to explain that despite having cerebral palsy and needing support from a personal assistant with everything I do, I lead as normal of a life as anyone can and in whatever normality is. I have the same level of choice as anyone else, which means I have the same level of responsibility as anyone else. Despite all the wonderful images of independent living promoted by the social care sector, it does not mean I have free choice, because no one has that. I can only go to the theatre if I can afford the tickets, have the time to go and so on.

The biggest mistake many social workers and other professionals make with me is when they tell me I can do anything I want within a service, since the reality is they have specific and low expectations of what I will want to do, and therefore they will be horrified when I actually do something they was neither expecting or willing to let happen. Professionals assume for disabled people, ‘going out’ means something like having a cup of coffee in town, but for me it means going whitewater rafting or seeing a musical in London.

Why must we assume disabled people expectations are limited and indeed good. When I lecture social work students, I like to challenge them to see how far they are willing to accept the true lifestyles of disabled people, even if that includes being a gangster. We will not have achieved true equality for disabled people until we can see them inspiring to achieve in all aspects of life, even if it is as a criminal. People must imagine what disabled people could achieve, and then take it a step further, and still further, until we can truly see disabled people as having the opportunity to do absolutely anything.

Unfortunately right now, this kind of equality is not on the agenda, as the 2010s will sadly be remembered as a period where the portrayal of disabled people as incapable inferior beings was strong and the damage that this was doing, in the name of fairness, was high. The fashionable hatred of ATOS is being used to justify the systematic prejudice of disabled people, often by disabled people themselves, in the same way racists use the fear of immigration to justify their prejudices.

Until we can see all disabled people as bundles of potential and assume with the right assistance and support, they can achieve or not achieve in the same way as anyone else, we should stop pretending that a fair society, in terms of looking after people deemed to be too weak to be considered full citizens, as anything to do with true equality and equal opportunities, as to achieve that, we must demand the most of everyone.

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

Sickness and Poverty Are a State of Mind

For many people, Sickness, in terms of people with long term health conditions, as well as Poverty have become the central issues and concerns as a result of this government’s welfare reforms. There is not a day that goes by without some news article or piece of research that explains the apparent woes of people on low incomes and/or those with health conditions. While I do not wish to dispute there are people who are struggling financially, or have health issues which affect their function or quality of life, I would like to suggest that the way someone approaches these challenges and responds practically and emotionally to them is about their state of mind.

Before going further, let me explain my own situation so you understand I am talking from personal experience on both issues. As a self employed person, I rely on work coming in which varies greatly from month to month, especially as I never know where my next piece of work is coming from. I am thankful for Working Tax Credits although as it assumes some level of weekly income which does not always exist, I often have less income than if I was on ESA. This means I have periods of the year where I do struggle and I have to be smart to manage as anyone else does.

In terms of sickness, as well as cerebral palsy, I experience chronic persistent pain as a result of a nerve virus in 2009, requiring four types of painkiller to be taken every day throughout the day. I have bouts of chronic fatigue and lots of other minor issues that I simply manage. While I work, at home a good 40 hours a week as a minimum, there is no doubt that in terms of WCA, I am unfit for work as anyone can be, which just proves to me how flawed it is, in a way opposite to most people assume.

So I am poor and sick by most people’s standards, and yet I feel as positive about my life as anyone can be. I am very rich in my experiences of life and feel healthy as I am happy with my situation and what I am striving for. The usual response to this statement is that I am very exceptional but why? Because I am and feel successful, why is that such a big deal just because I have cerebral palsy?

I would like to propose that for anyone in the media with a sob story about not coping because of supposed poverty or sickness, there is at least someone else in the same situation who are not just coping, but being successful, quietly getting on with it. The middle class and their associated media does not want to hear this, since they prefer to see people appear disempowered and dependent on them, because of poverty or sickness. If people realised that with the right attitude and frame of mind, they may not need the apparent assistance of all these charities, then there would be a lot of well paid charity workers unemployed and actually experiencing poverty for the first time!

While there is some specific need for Foodbanks, they are the fashion statement of this government as they have ensured the unnecessary revival of Victorian values, namely the poor should be dependent on the rich. I fear Foodbanks have made the mind set of poverty popular and that this is just the start of a drastic reversal of the opportunities of social mobility my generation had under Margaret Thatcher. By teaching people it is okay to depend on charity, as oppose to cutting their cloth appropriately, people will never gain the right mind set to be successful.

The same with sickness is happening, as charities and the media wish people to wallow in self-pity rather then gritting their teeth and just get on with it. And I am not saying having little money or being long-term sick is easy, but who said life had to be easy? It is our struggles that make us stronger people and I have never waited for the government or charities to improve my life, as I know the only person who could do that was me!

Poverty and sickness had always existed and I sometimes feel so embarrassed how soft this generation sometimes appears to be. If some charities and indeed disability activists were around when we were living in caves, we would have all been deemed unfit for work and would never have invented fire, being extinct a very long time ago. This is why I am convinced that both poverty and sickness are a state of mind we can all overcome.

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

Don’t forget the Spastics

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

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

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

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

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

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

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

Everyone Should Have a Voice

The personal communication between each other is a central part of what makes us human but for some disabled people who have no speech, speech impairments or other speech or language difficulties, the ability and indeed right to communicate with others can be significantly compromised and this is where the need for argumentative and alternative communication (AAC), communication aids, comes into place.
The story of AAC can be seen in parallel to the incredible story of technology, where the computer and other devices, as well as the internet, has dramatically transformed the lives of so many disabled people who would have simply been regarded as unable to communicate, let alone work, in a previous era. This is a story that is indeed personal for me as without this technology, I am sure the totality of my existence would have been basket weaving, or rather trying to, in a day care service rather than being the active person I am today.
I use a communication aid, a Lightwriter, as backup to my preferred method of speaking, which is being translated by my personal assistants for those who have ‘listening difficulties’. The fact I use speech and a communication device can be seen in how I used both methods when I starred in ‘I’m Spazticus’. I think it is important to note that communication aids do not need to be high tech to be useful and I would advocate that it is important for people to have a range of methods available to them to suit the occasion. I also appreciate that as someone with a speech impairment, I am indeed an ‘AAC’ user, I do not experience the same level of difficulties as someone who has no speech and therefore may have a stronger identity as an ‘AAC User’.
One of the downsides of communication aids is the price of what is often very high tech and specialist equipment, especially when someone is also unable to use a keyboard and uses switches or now eye-gazing technology. This means that many people who use communication aids can not simply go out and buy what they need outright, and therefore means they are dependent on funding from the state or others. The iPad, and its relevantly low price, has however been one of those step change moments for the AAC industry, giving an affordable communication aid to so many people including many who would simply not previously be deemed as eligible or able to benefit from one. However, the iPad or other tablets is not suitable for everyone and while it has been fashionable to push the majority of AAC Users to having iPads, it is important people get what they actually need.
Within England, the funding and provision of communication aids has been since April 2013 in the hands of NHS England as a specialist service for the most part out of the hands of local CCGs. One of the significance improvements to be made from the NHS changes is that on paper at least, the NHS now realises the need to providing someone of any age with a communication aid as a health need, for however long it is needed, in the same way as other technical aids like wheelchairs or hearing aids. Before this point, it was at the discretion of each old PCT, as well as educational authorities, and very much a postcode lottery from impairment to impairment. Many people who need communication aids still find it difficult to gain state funding for what suitable devices they need and therefore have to fund it themselves or rely on support from charities.
I am not sure if it is any better but the important point that everyone must have the right to communicate, in the same way as personal mobility, has been made and won. For myself, having a voice and being able to communicate with others is not just a politically correct good thing but it is an important key and starting point to providing people with the ability to self-determined their lives, taking advantage of their rights, as well as their responsibilities. The right communication aid can revolutionise the lives so many people society would have previously just written off, and as someone who has many friends with no speech, I have been privileged to see the benefits they can bring for myself.
If we wish all disabled people to be included into society as fully active contributing citizens, this must include those with speech and language difficulties. I feel as someone with a speech impairment, it is one of the last taboos society has in terms of disability compared to how we see wheelchair users and others. Communication aids as well as other technology gives people the ability to take up their rightful place in society and to be seen as well as heard, helping society to embrace speech difficulties as just part of life. More importantly, communication aids give people their own voice and so enabled society to recognise their personhood in their own right as fellow citizens.


No One Can Represent Disabled People

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

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

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

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

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

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

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

I Wear a Bib With Pride

Because of my level of cerebral palsy and the fact I dribble/drool, I wear a neoprene bib all the time when I am at home to keep my clothes cleaner and to prevent chest infections from a damp t-shirt. This is a personal choice and not everyone with cerebral palsy would need or want to wear a bib, some absolutely detesting the very idea, but for me, it works. It is not only useful but it is also a part of my identity and those of you who are observant will see that I am wearing a bib in my profile picture.
Bibs are just one of a whole range of equipment I find useful to use which others would find too ‘baby-like’ or medical to be comfortable with including nappies, plastic cups with lids and of course my helmets in case I fall. I even use big plastic smocks with sleeves for meals before I have important meetings so I can at least look clean at the start! It is a reality many disabled people will find odd and uncomfortable while others will know exactly what I mean. More importantly it is a reality that is an important part of my identity and a part of who I am, and chosen to be.
I can either resent what I need or embrace them with a pride for understanding who I am. Why should I compromise what is useful to me because society is uncomfortable that the image the equipment I need offers, or that many professionals may be worried about the illusion of infantilism rather than what people may find useful? I learnt a long time ago it is less stressful and more rewarding to learn to be myself, whatever that may be, rather than try to be what others may wish me to be, whether that be family or society at large.
It is clear from my previous article on what barriers disabled people face in being happy, that a large minority of disabled people have not reached a point where they can even imagine they can be happy with being disabled, let alone have pride for how they are as disabled people. I think it is important to say again that by happiness, I mean an inner stability and wholeness as opposed to any sadistic love of pain, difficulty and discrimination. Being happy is an identity thing rather than anything else and so many newly impaired people have a disjointed identity as they come to terms with their new situation.
But in the way I can recognise and accept where they are in their journey, something society seems more ready to embrace, they must also recognise and accept where I and many others are in terms of being positive about who we are. It is something which society is starting to accept and embrace. I feel positive portrayals of disabled people in the media, like the Paralympics and I’m Spazticus, have helped society to embrace a positive side to disability but it is important not to over simplified the situation by assuming these are in anyway representative of all disabled people.
Identity is personal and comes from the large and small complex choices we make including how we dress and interact with others. I know for example that the fact I wear a helmet when I go out means that some people wrongly assume I have learning difficulties, if they do not already think that. But I have chosen to ignore this and wear one anyway to reframe the image of a helmet user as well as preventing head injuries. I am also aware that I have as someone with uncoordinated movement, got a level of freakish approach, which I need to embrace to be successful as a contributing citizen. Freakism has the often amusing power of catching people off guard and allowing myself, the supposedly vulnerable one, to get the upper hand until they are able, if possible, to compose themselves.
While some people would find it rather offensive to have pride in what many see as weaknesses and symbols of vulnerability, I would argue why I can not be proud of who I am and indeed when I have been very depressed and frustrated with life, it has been my pride that has kept my going and this is why ‘Proud’ by Heather Small is my personal theme song. I believe everyone should have the opportunity to be proud of who they are, warts and all, and that society should support people to have strong self-identities.
I am proud of wearing a bib because I am happy and comfortable about who I am, even if it is very different from the norm or what is expected from me. I ask others to spend less time judging myself, or anyone including themselves, and more time being proud about who they are from the choices they make.
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 Am Disabled and I Am Not a Socialist

I remember a time when disability politics was simply about the issues, providing improved accessibility and greater rights to people with impairments regardless of who was in power. The disability lobby always received a more friendly ear from Labour than the Conservatives but it was all friendly. But in recent years, as sick people and people with hidden impairments have gained a bigger voice, maybe at the cost of the voice of people with significant impairments (who may on reflection may never have had a voice), the agenda has turned from rights and responsibility to welfare and dependency as a desired goal, as the prejudices towards disabled people by disabled people becomes so much more apparent.
The sad reality of this agenda shift is that I believe the disability agenda as been hijacked by the wider socialist movement. By socialism, I am referring to people whose politics is Left of Labour and purport to believe in social justice. These are the people who enjoy attacking the government whatever the reason, and the supposed welfare cuts affecting disabled people are simply the latest in a long line of bandwagon issues which they have hijacked from anti-capitalism to the Vietman War to further back to beyond my time. Social media has galvanised the damaging power they can weld.
This has led me to believe that currently if you are a disabled activist, or claim to be simply one because by write anti-government tweets, you must be a socialist and that you can not be anything but a socialist. This is because a significant minority of people, claiming to be disabled, also have some link to socialism, and feel they have the absolute right to control the current disability agenda, viciously attacking any disabled person who refuses to go against their victimhood agenda. It is clear that the so-called collective has a dislike for disability despite often being disabled themselves and care less about the damage they are causing to disabled people, so long as they can attack this government.
For myself, the only difference between capitalism and socialism in terms of disability is whether the residential care institution people with significant impairments are locked away in are funded by charities or the state, as neither political ideologies has shown its natural desire to include disabled people as contributing citizens because disability is an issue far more complex than to be properly dealt within the simplification of party politics. As a result, I feel in recent years that the personhood of disabled people has been lost and we are all portrayed as victims dependent on the welfare state.
Like it or not there are only a small minority of the 12 million disabled people plus sick people in the country will ever encounter ATOS, even when they start reassessing people for PIP. But because of this fierce minority full of anger and hatred, who I am as a person is lost like so many others. My hobbies, my interests, my roles in society and so much more of who I am is boiled away until all is left is someone labelled ‘profoundly disabled’ and unemployable, with no means to contribute to society, simply reliant on state charity.
I am tired of this misrepresentation of how I am and I will not be silenced. Why should the silent majority of disabled people, who are also not socialists, suffer and be turned into nonsensical statistics, simply to please this minority? The answer right now is that if you refuse to nod your head when they demand, they will bully and intimidate you until you learn to behave, as they have turned social media into their own version of Room 101. And because the public just sees all disabled people as perfect angels who can do no wrong, they simply get away with it!
Impairment can affect anyone regardless of their background and we must assume that disabled people includes a wide range of viewpoints, just like any group, and it is immoral for any political movement to hijack any group for their own agenda. Diversity must be respected and for too many people, these are empty words as the only diversity they accept is the kind their approve of. What changes the world for the better has never been what a collective majority have wanted but the minority and extreme viewpoints of mavericks who have been prepared to challenge the norm and stand up for what they believed in.
I am disabled and I am not a socialist because I am an individual with my own mind, not a sheep following the latest fad because it is easy.

What Does Disability Mean Anyway?

In 1999 I started a MA in Disability Studies in Sheffield that I gave up after a year because it was bias towards psychoanalysis, something I really could not get my head around. I however gained a lot from the experience and the first lesson I learnt was that within disability, there are two basic but unanswerable questions. These are what is disability? And how many people are disabled?

To the average person these may look easy questions but as soon as you examine them properly, you realise they are impossible to answer. Disability is a socially constructed concept, like many things we assume to be the norm, and what is interesting is how many different definitions of disability exist. If we ignore other countries and just focus on the UK, and even than just on legal definitions of disability, we can still find quite a number. How disability is defined in the equality act is different to that to qualify for DLA/PIP, which is different to qualify for ESA, social care and even educational support. The definitions of disability are contradictory, incompatible and confusing in trying to understand what assistance someone may apply for.

But all these definitions are based on one of two models of disability, which are the medical model and social model, as defined by disabled people themselves. The medical model was born out of the industrial revolution and sees disability as a medical problem, where a person’s “deficiencies” is the focus of attention, that needs curing or removing since a disabled person is an inferior being that has no meaningful place in society. Over a century ago, this way of thinking saw the creation of special schools and residential institutions that are still to some degree with us today. Most people would like to believe we have moved on from the medical model but I am not sure this is actually the case and in fact worry that in recent years, the medical model has been widely adopted by many supposed disability activists.

In the 1970s, a group of disabled people got tired of the negative portrayal of themselves as bundles of medical problems and created another way of looking at disability. They firstly divided the biological side of the issue, impairment, from the social side, disability. So the social model acknowledges biological differences, impairment, as a matter of fact, eg I have cerebral palsy and this is just the way it is. But the model argues that disability is the social barriers that people with impairments face that as physical access, poor attitudes, lack of personal support and so on. It is a model that has been widely adopted by most disability activists, charities and others internationally, and has been central to much social policy since the 1990s.

As someone who has grown up with the social model and for the most part, lived the social model, I have made my own observations and interpretations. Firstly, I think it is becoming increasingly accepted that everyone has impairments in one way or another, and more importantly that not everyone who has some kind of impairment experiences disability, which is social barriers. Impairments need to be managed, as a fact of life, and the personal experiences of impairment, however difficult, may not bring disability. I feel this is a concept people are just starting to acknowledge and trying to understand.

Secondly, I personally regard disability to be a state that changes from minute to minute like the concept of being vulnerable. My core identity is my impairment and I see disability as external to myself. I am only disabled by many specific situations, which can be removed by improved access, improved attitudes, personal support and so on. I am therefore not often disabled at home because my environment is set up for me. When I go somewhere new, they may be more barriers and therefore I would be disabled. On this basis, I see the role of government is to remove these barriers and so reducing the number of people with impairments who experience disability. It is however difficult for many people with impairments to relinquish their disability status.

Finally, I see the social model as removing the barriers that are in the way of disabled people taking up their responsibilities as opposed as being about rights as citizenship is a balance of rights and responsibilities. As this dawns on people now many barriers are been undoubtedly removed over the last 20 years, there are continuous moves by some people to discredit the model, saying it is ‘old hat’ or arguing a range of excuses why it does not include them. This makes me wonder why disabled people fought for the equality they now have when this is not what they really wanted?

Disability is a concept that is far more complex than people would ever imagine and this article has only provided you with a brief insight into the issue that has more questions than answers.

What is a Personal Assistant?

For many years disabled people, like myself, who have needed care and support have employed personal assistants (PA), using monies from the government, instead of using care agencies. While disabled people once had to fight hard to employ a PA, in recent years the government has recognised the benefits they bring as they have encouraged them as the norm for many people. But as the number of personal assistants supposedly rises, it is important to properly define what a PA is, something so far the government has refused to do.

Before going any further I wish to make it clear that I am not judging the individual relationship any service user has with someone who supports them that is working for them, merely whether we have accurately call the person providing the support a PA. It is also helpful to understand what the term carer means which is a confusing term with many meanings. A carer could be an informal carer, a family member or friend who is unpaid. The term also refers to a paid care worker who works from someone other than the user(s). And finally, simply to confuse matters, it could refer to a personal assistant and many people prefer or insist on using this term to describe their personal assistants. I admit that to simplify matters in some situations, I just say carer to ensure people know what I mean.

So getting to the heart of the matter, I would define a personal assistant as someone independent directly employed by a person who is capable of directing them and requires care and/or support tasks to be performed. Let us break this down to ensure we understand this definition. The person has to be employed rather than self-employed, which has been a bone of contention between myself and the government who believes it does not matter how people are employed. But HMRC guidelines clearly state you can not direct someone who is self-employed, only specify what you want doing not how you want it to be done. Many people think the difference between being employed and self-employed is simply who pays the tax but the reality is its significantly affects the control and responsibilities each party has and therefore the relationship, making the difference between a PA and a care worker.

I would also argue that for a person to employ a personal assistant, they must be able to direct them on a day to day basis themselves. A true personal assistant simply follows the instructions of the user and is only responsible for the quality of their work, not specifically the welfare of their employer. Rather, a employer is responsible for the welfare of the staff they employ and direct. If someone is unable to direct than they may employ someone with assistance or have someone employ a person on their behalf, but the person employed is likely to be directed by someone else, or required to follow a specific support plan, aligning themselves to being care/support workers rather than PAs.

I also believe a true personal assistant has to be independent from the employer to avoid any conflicts of interest. It has become increasingly fashionable for people to employ family members as personal assistants. While it is not my business so long as it is working for them, when we are talking in terms of accuracy, I have to question whether they can be defined as a personal assistant. The government is now putting money into developing the PA workforce and the question to be asked is whether that family member would continue to work as a personal assistant after the user no longer requires them? The answer is probably not! I am really unsure how well you can truly direct a family member, especially immediate family, as there must be a whole range of potential conflicts of interest occurring. I would certainly not like my family involved in my care and support.

In terms of what a personal assistant does on a day to day basis, this is a very individual thing depending on the needs and wants of each user and the outcomes agreed by the funding bodies paying. I do not feel you can specify this in any way nor create standards and mandatory training as the government has been trying unsuccessfully to do. The relationship between personal assistants and those they support is so individual and is more like a marriage (and a divorce!) rather than an employer/employee relationship.

So these are my thoughts of what a personal assistants is and I hope this article can maybe begin a proper debate on the subject so everyone can properly understand the issues involved.

Why Can’t Disabled People Be Positive?

My all-time favourite song and my personal theme tune is Proud by Heather Small, because it sums up how I feel about my life and who I am as someone with cerebral palsy. I believe the media along with the disability charities and many activists has polarised the lives of disabled people, where we are either heroic paralympians or more likely, and as they wish us to be portrayed, miserable benefit claimants living a life comparable to being in a Victorian work house. But disabled people are three dimensional characters who have plenty to offer society, plenty of wonderful experiences to enjoy, and can lead amazing lives in a way that is just normal.


A perfect example of something positive I have every reason to feel proud about is I’m Spazticus, which broadcasted the first episode of its second series last night, and starred myself as well as a whole diversity of disabled actors. This cutting edge and controversial prank show is one of the few positive but not patronising representations of disabled people on TV to date as its shows we can be funny on many levels.
The show is a combination of hard work and irrelevant cheek that shows we do not always need to be the victims of the story, puppets for others but we can also be the puppet masters, pulling the strings of the poor unsuspecting public. I’m Spazticus does not show the exception but the norm people have forgotten in this era of welfare reforms.
But disabled people do not always need to be this extreme to be positive. One of my greatest personal achievements has been Wheelies, the world’s first virtual disability themed nightclub I founded seven years ago that is still running using the 3d virtual environment called Secondlife. The club has never been for disabled people but simply disability themed becoming a virtual place for people to come and relax, listen and dance via their avatars to music, live DJs and artists.


What so many people found revolutionary was that my avatar used a wheelchair, the very first to do so, despite the fact I could be anyone I wanted to be. I wanted to be me as someone with cerebral palsy and this has continued to capture the excitement of the media and academia ever since I started. The idea someone would choose to appear disabled when they did not need to has helped people understand the positive side of disability especially as the number of virtual wheelchair users around the world have grown.
But these are two examples on being positive at work, where it is ‘easy’ to put on a brave smile, but surely I have no time for fun? Well, I am not when of these many ‘disabled people’ who sit on their beanbags all day on their laptops writing blogs or tweeting how life is terrible! My life is in fact great and I have a great social life. My passion is water sports and I love doing anything that involves wearing a wetsuit and getting wet!


I am no paralympian and I do these activities simply because I enjoy them and they are fun. At the end of August I am going on a week long disabled windsurfing camp in Belgium, as the only Englishman there and it will be my second time at the camp. I windsurf sitting down using a specially adapted board and it is great fun. It will also be great to be around a group of disabled people who are clearly doing something positive, for a week at least, and who probably never heard of welfare reforms or ATOS, let alone hate them! This is certainly a real and deserved break for me.
I believe and demonstrate wherever and whenever I can disabled people can be positive. We can achieve great things, which others may or may not call work. We can make contributions to our communities as citizens, to our families as parents or siblings, and to society as whole people with diverse skills and abilities many already demonstrate every day as just normal events.
In this context, I have started a campaign called ‘Yes we can’ (www.simonstevens.com/yes)that aims to show disabled people can work in one way or another, although may not always been ready to work, and deserve the chance to have a positive life. Being positive is not about pretending everything is perfect and smiling all day, it is about the right attitude to approach whatever barriers you face in a way so that you can overcome them, not just give up and play the victim!