Campaigning Is the Modern Tear Jerker

There was a time, before the 1990s, where all disability charities had to do to raise money was put a disabled person, ideally a child, on a poster looking pitiful and describe how miserable their lives were to be on a winner. Then disabled people started to have a voice and made it very clear that they would not tolerate this abuse of their portrayal, and so these charities had to come up with a new way of promoting themselves, which was campaigning.

Campaigning started as a great fresh way of doing things but it has now become a problem in itself as everyone uses it. Campaigning is a way of charities to claim authority over an issue, and be a voice for a section of society, controlling their political contribution, often without the involvement of those they purport to represent, simply to be a ‘tear jerker’.

If we explore the news nowadays, a large proportion of it is simply controlled by charities who promote their campaigns as facts. If people knew that the campaign teams of many charities were made up of twenty something politically correct graduates who decided their campaigns on a whim, maybe this so-called news could be put in context. These teams think they can simply write a basic and leading questionnaire, promote it on social networks to those who will agree with them, especially with the leading questions, and then dare to report it as facts on the whole population, simplifying a complex issue, for the benefit of raising money, simply to pay their wages, and not help anyone else.

And the problem is while every disability charity claims to be the voice of disabled people is that they can contradict each other and here is a perfect example. Leonard Cheshire Disability has recently made a name for itself for trying to make 15 minutes social care calls illegal because they regard them as indefensible, declaring war on anyone who disagrees with them, which I do. While they use the image of a helpless isolated person having a get up call to win their argument, the fact is there are plenty of examples where a 15 minutes call may be suitable and desirable, which they will admit when pushed. But going against the spirit of personalisation, they want hours taken away from those with higher support packages to pay for 30 minutes calls to be imposed on people who may just need or want 15 minutes.

At the same time, Scope has been campaigning for people with moderate needs to have the level of social care they supposedly need or maybe want, although they fail to mention that could include people with broken legs and fails to take into account the use of technology or enablement. If Scope got their way, logic would dictate that those with moderate needs would need, want or prefer 15 minutes calls to assist them with the small amount of help they need. But Leonard Cheshire Disability is campaigning against 15 minutes calls and so by default campaigning against the needs of people with moderate needs.

Both charities claim to have the moral high ground and be the voice of disabled people, but can they both be right? I believe their true agenda is to bring more money into the national social care budget, so like the other providers, they can raise their care fees and so their ‘profits’, that exist in all but name, without actually improving the quality of service by helping more people with moderate needs or reducing the number of 15 minutes calls, probably increasing them. But because their call their marketing and political lobbying campaigning “on behalf of disabled people”, the public sees something so wonderful that it can not be challenged.

I believe charities will never be forced to be more accountable and change this abuse of the people they claim to represent until the general public properly understands what 21st century charities are and what they actually do, or don’t do, like help people. A perfect example is I am sure the NSPCA does not have a bank of trained volunteers working on Christmas Day peering through windows to make sure all the children in the country are having a good Christmas, but we are led to believe they are the only organisation that protects children, which begs the question of why do we have government funded children social service departments doing the same thing?

We should all know there are lies, damn lies and statistics, but that does not stop charities fooling the public with their fancy charts and misleading headlines as they use campaigning simply to keep themselves in business for the benefit of themselves, and often no one else. It is time for charities to stop campaigning, blaming the government for everything, and start going back to doing what they are supposed to be doing, which is helping the people who actually need their assistance.

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

Disabled People Can Work, Rest and Play

I might be showing my age when I say I remember the Mars bar advertising slogan “a Mars a day lets you work, rest and play” but I think it is a perfect way of describing what a balanced lifestyle is, in terms of mental wellbeing. I would like to propose that disabled people need and deserve to have this balance, in the same way as anyone else.

The first and probably most controversial of these in terms of disabled people is of course work. While many disabled activists claim they wish to work, the evidence is very different. This can be highlighted by an astonishing article on a disability blog I read on Friday that claimed that many disability activists were offended that the Conservative Party used the term “hardworking people” at their party conference, which suggests to me these activists believe disabled people can not and should not work, seriously insulting the many disabled people and their families who are hardworking in the widest sense of the meaning. I think this desire to write off disabled people as unemployable is demonstrating these activists are like the racists who hide behind the issue of immigration to justify their belief system.

Work for me does not necessarily mean paid employment or indeed any employment but also education, training, parenting and so on. For so many, work is therapeutic, and often the best way to manage something like depression is not to sit at home stewing but actually being at work for a whole range of reasons. If you really want to work, you will find a way of doing so, even if there are a lot of barriers. Once again, those who are complaining that the government is not doing enough or public transport is terrible, despite often having a car, are simply making excuses that I am tired of hearing.

Those who work clearly deserve a rest and therefore deserve a stress free holiday, which is currently more easily said than done for many disabled people. A holiday is something that has to be earned and I am afraid if you are too sick to work, then you are too sick for a holiday. Holidays are not so much a luxury as an important way to balance the left brain with the right brain, and ensure people can relax and keep good mental wellbeing. While doing nothing, or just less, may be great for a few weeks in the year, it can be very stressful if it is forced onto people.

I believe one of the biggest problems for disabled people who do not work, is the unnecessary stresses and strains of not working on the mind as boredom can be much more damaging than any amount of hard work. If I was told I could not do any more work ever again, like many people, I think I would feel my life was not worth living. This is why it is so important mentally and emotionally to have the right balance between work and rest to have a good quality of life.

Play is the poor relation of Rest, especially amongst adults. While people can get the need for a holiday, the gaps between them can be too long and therefore we become burnt out before we reach our holiday. Play is those little fun and exciting things we do on a more regular basis to keep us sane. These may include going swimming, going to the theatre, going Whitewater rafting and so on. There are as important to the mental wellness of disabled people as much as anyone else, but it is often what gets the least attention.

I feel that like holidays, it is right that the state does not generally pay for play as it must be earned through work financially and emotionally. This means those who prefer not to work, in the widest sense, are excluding themselves from play, and having a balanced lifestyle, probably exacerbating the stresses and strains they are experiencing. While people understand the Paralympics, access to grass root mainstream sport and other activities for disabled people is still not as accessible or inclusive as it should be. This means many disabled people are not attracted to play activities and therefore are denied the opportunity of a balanced lifestyle.

We must look at changing welfare and social care policies to ensure all disabled people, and indeed everyone, have access to the three components that make a balanced lifestyle, if not just for their benefit, then for the benefit of the whole of society as a solution to addictions and other vices. Hard work is something good for the health of the nation, not a form of stigma to be avoided.

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

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 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 or follow me on twitter, @simonstevens74

Matthew Goodsell is a stupid boy


Matthew is someone who also has cerebral palsy and 30ish. In recent weeks he is decided to launch a systematic attack on myself after he had finally discovered my Huffington Post articles, two months after everybody else, because he says I have betrayed his community, which I assume he means the fake disabled who are offended at the notion disabled people can work, and see disabled people as inferior beings who should be paid off to suffer in silence, or be killed by their families.


I had to admit for a lazy boy, he has been busy. He has set up a petition to have my articles removed from the Huffington Post, demonstrating his hatred of free speech and therefore human rights. He has also put when intelligence abuse on my wikipedia page, linking it directly to hate speech. This boy has appeared to put his hands up to all the abuse against me and therefore i must assume was involved in the Wow Petition’s attack on my free speech, as well as DNS, in terms of going to the Labour Party conference. I must also assume he knows whoever ‘Edward Lee’ is and supports his weekly threats against me.


As the new self-appointment hit-boy of the Wow Petition or any other abusive organisations who wish me to disappear, I should explain his background. Despite having a PhD, he does not work and has never worked. He is not involved in any organisations and never helped anyone but himself. Despite pretending to be a working class socialist, like a lot of part-time disability activists, he is in reality a middle class Tory, who has abnormal fetish for David Cameron. He thinks because he went to university and knows a few big words, he is a world-class commentator on a blog only he himself comments on and this means he can attack me with a degree of arrogance I have never seen before. He has had nothing published and does not understand ‘his community’ in any way.


The joke is he tells me I do not understand disability and I should but out. Well, I do not obey stupid boys who know nothing about nothing, especially those who support a community which is demonstrating a hatred for disabled people as inferior beings hidden by their irrational hatred of ATOS. I am trying to improve the situation for disabled people, including those who deal with ATOS, and this boy is trying his hardest, which is not a lot, to make it much worse.  He wishes to have blood on his hands, but it will not be mine. I just hope one day he is forced to pay back the government for his higher education he is clearly refusing to use.


If you like what I say, have a look at my site at or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email  



Why the ATOS Haters so rude to me?



Over the last months, I have been receiving some really nasty personal comments on specific articles I have written in the Huffington Post, both in their website, on twitter and elsewhere. These have been from people I have never met or had any kind of dialogue with. The comments are incredibly rude, offensive, nasty and while I hate to admit it, hurtful, especially because if they really knew me and what they were saying, which I don’t they are capable of understanding, they would not dare talk to me in this way and I doubt any of these mindless morons would have the guts to confront me face to face.


I am the ‘victim’, for a better word, of classic bullying and gang culture. They feel confident as they believe attacking me just because is going score them points with their so-called friends, who share a prejudiced towards disabled people. I am more and more convinced that people’s immense hatred for ATOS, regardless of what they think they know, is a crutch for their real deep prejudices for disabled people, as inferior beings unable to work and unworthy of equality. Their pity for people they personally regard unworthy of equality is an easy manifestation of their hatred of people with me.


And because I know the god awful truth and prepared to shout it from the rooftops, I am a threat to the comfort zone they have built to justify their prejudices as they turn a blind eye to abortions, mercy killings and abuse by family members since they just want the state to pay for these people to disappear, one way or another, even if that includes them. If disabled people are found fit for work, they may demand equality and the whole fabric of society will full apart, which can not happen. And since they can not rationally argue with me about this, even if they were capable, all they can do is abuse me with rudeness like the morons they seem proud to be.


If you like what I say, have a look at my site at or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email  


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.

The real reason I did not attend the Labour Party conference

Several months ago, I applied for Leonard Cheshire Disability (LCD) ‘Access all Areas’ scheme that supports disabled campaigners to attend a party conference. My application was upfront about who I was and I believe on that basis, I was successfully selected to attend the Labour Party conference. Unfortunately, due to specific circumstances I was not able to go and I can now give my side of the story to this sorry situation.
Just by chance rather than anything else, I started blogging for the Huff in August and at the same time wrote an article for a so-called disability news service on why I intended to work with ATOS. These events collided into an explosive response from many so-called disability activists, and so I was attacked and demonised with vile personal comments simply because I dared admit working with ATOS, despite the fact that so many also do but are too cowardly to say so. For weeks I received so much hatred from these so-called activists, who in reality seemed to show their dislike for the human race in their abusive behaviour. I duly responded to some of their hateful tweets with some honest remarks I still do not regret as their remarks were farmore abusive to myself and true disabled people.
When the announcement came from LCD that I had been selected to attend the Labour Party conference many of these spiteful less disabled ATOS haters became extremely offended that a real disabled person, one they seemed to regard as too profoundly disabled to deserve a voice, had been selected, using my defence against their hate speech as an excuse to deny my free speech. According to a supposed bias journalist/blogger, one of the complainants was Ian Jones, on behalf of the WOWpetetion. The WOWpetition is the brainchild of  Francesca Martinez, a middle class woman with CP who thinks she is the Bob Geldoff of disability as she tells the mainstream media the lies and myths of the so-called disability movement in a fashionable way.
The aim of the petition is to get the government to produce an anti-government report under the guise of a Cumulative Impact Assessment, which serves no real purpose other than wasting time and money. The potentially lengthy commission likely to be made up of the disability elite and non-disabled experts would simply allow the disability charities and others toline up to present their list of demands for more money to further disempower disabled people, in the name of evidence! While it is Francesca’s job topresent the petition as their angelic political correct thing to do, it now appears it has been left to Ian to eliminate the competition and to use his army of mindless ATOS hating robots to verbally, and possibly physically abuse, any disabled person who refuses to portray themselves as unemployable worthless victims in line with his self-loathing ideology. This is very odd behaviour for someone who claimed in a recent comment to one of my articles not to want to represent disabled people?!
You would have thought when his complaint was put in the hands of LCD it would have be dealt with in the sensitive manner it deserved? Well, no. The first I heard was when I got an email from a manager I did not know saying she was coming to see me the next day whatever without any explanation. As someone used to this kind of bullying from so-called professionals, I rang them up and they reluctantly told me that they had simply decided to withdraw their support for me going to the Labour Party conference because of my apparent abusive tweets. I asked them if they can at least give me a right to reply and they said no, nope, not at all and that this was a decision made with the support of the Chief Executive, Claire Pelham. I had to really wonder what was the point of meeting me if they already made they mind up other than to abusively rub salt into the wounds?
Let us leave their decision for one moment since that was their prerogative and focus on the fact they did not give me a right to reply: Some readers may be thinking ‘and so?’ Well the point is for a charity that provides care services and is supposedly inspected by the Care Quality Commission, this is certainly reason for grave concern and I will explain using another example. Say I am a service user in one of their care homes and a member of staff had made a complaint that I swore at them and in line with their supposed zero-tolerance policy I was given 24 hour notice to leave the service, effectively making me homeless without any right to reply. Because the matter was not investigated I could not explain the staff member had been hitting me and I was too scared to say. Unfortunately this abusive action it happened once, to me, could mean that it will happen again, especially when you remember the actions were at the direct approval of the Chief Executive.
After the BBC Panorama programme of the abuse at Winterbourne, everyone in the care sector, including LCD, promised it would never happen again. However, this is real evidence that within this charity, the ingredients that made grave abuse possible are alive and kicking. All I can do is bring my concerns to the public attention before someone less able than me suffers at the hands of LCD, or indeed the WOWpetition. There is a darker side to the disability field that we all need to take into account, as the voice of the minority protects itself from real voices like my own.

More information on the matter can be found at

Why do I need to work with Sue Marsh and others?



One of the responses I read on Twitter from one of my latest Huffington Post articles on representation was that they felt despite what they see as my extreme views, that they somehow needed to work with me. Sue Marsh responded to them saying that people had tried publicly and privately to engaged with me and failed because I was so uncooperative. Well, if she means I am not prepared to be a good little boy (and btw, I am 39!) and agreed with everything they say because despite the fact I have been around much longer than they have, they know best, than of course I am going to tell them to get stuffed!


What has Sue Marsh and others got to offer me since I doubt she would ever campaign for Changing Places, if she even knew what that was, and the many other issues of what she continuously keeps insultingly refer to as the profoundly disabled, like we are suffering souls better off dead! I am continuously told that sick people are not disabled because they can’t work until they want our benefits and rights, and then they are strangely happy to be disabled.


If Sue and others were truly prepared to meet me halfway and recognised I knew what I was talking about and there are a whole range of disabled people they do not understand as they tried to portray all disabled people like them, then I would be prepared also to meet them half way. The fact Sue and others seem not to accept many disabled people are happy being disabled, do not deal with ATOS, and will not suffer cuts, suggests they are playing a very different game to myself and I am not interested in their victimhood politics. I am also not prepared to compromise my desire to improve the lives of people with significant impairments, more than any other group, so I can pretend to be friends with someone who would simply pity me if she saw me in the street.


If you like what I say, have a look at my site at or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email  


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.