Impairment

Saying ‘you can not harm the disabled’ is harmful

I used to equate independent living for people with impairments as the end of Black slavery in terms of liberation politics, but the sad reality is it was merely a small colony of slaves who broke free, which I myself followed as a young man, leaving everyone else behind still enslaved. The recent debate in the House of Lords on ESA, led by Tanni Grey-Thomson, was the equivalent of debating the living conditions of black slaves and how they should be improved by their masters, not the abolishment of slavery.

Society understands it is wrong to treat someone differently because of their gender, the colour of their skin or sexual orientation, even if not everyone agrees with that, and punished accordingly. So why does the fact my speech is naturally slurred cause society to treat me so different? As soon as I open my mouth, often before, my personhood and intelligence is questioned and undermined. From the day I was put in an incubator I had to prove I had a place in society. My bipolar has provided me with an overactive mind and a deep frustration when I feel directly or indirectly my self-worth is being undermined, causing me to challenge those who do, including Tanni and many others who believe they are doing the right thing.

When I hear people like Tanni, the many middle class white fat cat  charities proclaiming themselves ‘disability right campaigners’, and a disabilist media who endlessly scream loudly that ‘you can not harm the disabled’, I have to work very hard to stop myself becoming Darth Vader on a mission! A colleague recently made the problem clear to me when they stated a belief people with additional or changing needs should be assumed to be able ti access social mobility, which links into my enablement and empowerment agenda.

Living, true living, is about taking risks and ‘not harming the disabled’ is about denying people with additional or changing needs that right to take risks, which is harmful to their place in society. While people suggest they accept I can work, because I fought so hard to prove the case, we still live in a society where it is assumed having slurred speech means I need to be excluded from society. While people like Tanni may rightfully oppose assisted dying, and that people like me should not be pushed to end our lives, it does not mean we are yet seen as equal members of society.

In almost 42 years lived experience, I have viewed impairment from every possible angle and I know that it is complex. I am still learning and trying to understand issues, which my articles here are a part of. My vision is a world where having a different form of speech makes no difference. However impossible that may seem, it is no more impossible than how gay marriages have become acceptable in my lifetime, emerging from an era where in the UK I could have been arrested for my sexuality.

People with additional or changing needs need respect, support  and understanding as equal citizens capable of social mobility, not protected as the runt of modern society, tolerated because of political correctness and paternalism until a solution can be found.

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.

The Barriers to Disabled People’s Happiness

I strongly believe that everyone has the opportunity to achieve happiness if they wish it, including disabled people. By happiness, I mean a natural contentment, a level of inner stability and a positive outlook that enables people to deal with anything that life throws at them. It is not a perfect state of bliss but rather an achievable state of being that we can have if we are willing to make the effort to grasp it.

For people who have been born with impairments, like myself, they do not know what it is like to be any different and so they have a strong self-identity as disabled people and will be on a whole be happy with life, as I am. But the majority of impairments happen during people’s lives and are more likely as we get older. The onset of impairment, whether sudden or gradual, will create a change in a person’s identity and this will result in some form of grieving process that the person may or may not recognise.

The grieving process can have up to six stages, which are denial, anger, bargaining, depression, acceptance and celebration. I would like to believe that the proper completion of the grieving process goes a long way to enabling someone to be happy, and this is where I feel we have the problem. The grieving process for anything may take a few days, weeks, months, years or even decades. The way each person comes to terms with having impairments is going to be very different and I am not about to prescribe any rules. However, I will say that the biggest barrier to disabled people’s happiness is often that they are stuck somewhere in the grieving process, often totally unaware of the problem.

I truly enjoy having cerebral palsy, and I know I am not alone, but there are so many people who are not happy with being impaired because they have not reached the acceptance stage of the grieving process. Their dislike of their situation is transferred into a belief all disabled people dislike being disabled and this forms a pity model of disability. If any stages of the grieving process are not properly recognised and supported it can be destructive for themselves and people around them.

The potentially most destructive stage is anger and this is where people’s unhappiness of their situation is thrown into sometimes irrational rage for things which they feel challenges them. This is where we can see the rage against any supposed cuts ‘against disabled people’, as newly impaired people focus their anger on anything or anyone who goes against their maybe unrealised dislike for themselves. I believe this is the central reason why some of my previous articles and comments have caused such a reaction by people clearly still coming to terms with their impairments. They will clearly deny this but as they are often consumed by their unrealised grief, they will not be able to stand back and see what their anger is doing to them and others as it manifests itself into hatred, jealousy, envy and so on.

My frustration is not with the uncontrollable actions of people going through an inescapable process of achieving acceptance at some point in the future, but how the liberal media and the charities exploit disabled people’s irrational anger for their own objectives, without providing them access to proper emotional support to achieve happiness. The rational leaders of campaign groups have used the anger of grieving individuals for centuries, delaying the process in others to have their pawns, ready to believe anyone is their enemy. With the era of social media, these pawns can be pointed towards the people who challenge the views of the leadership, acting like piranhas as they verbally strip individuals to the bone quicker than you can say anything.

Since the media, charities and campaign groups benefit from stopping disabled people finishing their grieving process, we are left with a growing population of very angry people. This is made worse by the fact the NHS, DWP, ATOS, Social Service departments and so on very often have no understanding of the grieving process, let alone be able to recognise and support individuals to come to terms with their impairments. It is not until there is a greater focus on the emotional journey can many people with impairments achieve some kind of happiness. This happiness will also make them stronger to challenge the cuts that may directly affect them in a way they will be currently unable to do, trapped in a world full of red mist.

This article is likely to receive a hostile response because it is difficult to tell people what they are not ready to hear, even if they need to hear it. Personal attacks are a symptom of the problem this article deals with as many disabled people fail to understand happiness has little to do with what they have, or what is external to them, but rather how they feel.

Unfit is the new ‘n’ word

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What I find shocking is how so many so-called  disabled people now fight for their lives to be labelled ‘unfit’. I feel unfit is not just a term they argue is about paid employment, but is rather a term that implies someone is unfit for all aspects of society. Once this negative and destructive term is placed upon someone, there is no going back like terms like ‘not ready for paid work’ and it is a social prison sentence for the rest of lives. What is worst and so more damaging is what society see someone with a minor impairment being declared unfit for society, they will automatically assume those with more significant impairments are also unfit. Therefore these sick activists are destroying my opportunities to be included in society.

 

I believe that it is only a matter of time before society accepts my belief that calling people ‘unfit’ is the new n word and one of the greatest insults you could give a person as you imply someone is unworthy of their existence in society! It is criminal people celebrate when ill informed and prejudiced judged are wrongly labelling fit people unfit in appeals, forcing the person to be excluded from society and dependent from charitable handouts from the state. The government is trying to rescue fit people from the evils of a prejudiced society.

 

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  

 

Impairment Pride

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If and when the demands of social model are met and disability as a social barrier is eradicated than you are left with is impairment which can not be removed. Impairment is something that no only needs to be managed and supported through a variety of medical and social interventions, but it is also a form of identity which a person may or may not consider to be a large part of who they are, which is a complex and individual decision. Identity leads to pride and this leads us to impairment pride, the idea that people are openly pride about the impairment their hand and wish to celebrate accordingly in a manner that has nothing to do with disability.


I am certainly proud of having cerebral palsy and this is shown through my ‘proud spaz’ alter ago and my appearance in the “I’m Spazticus” prank show. Some people find it very hard to understand why someone would want to celebrate having an impairment since they see it as a negative thing, despite claiming to support the rights of disabled people, but I believe it very important to feel happy about who we are and for some of us, we want to shout about it, demonstrating our pride in who we are as people with impairments, not disabled people.

 

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  

 

The sick are not special

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In the last three years, born out of the welfare reform, has been a minority movement building to redefine long term ‘sickness’ as a special kind of impairment that does not fill into the rights and responsibility of the social model, but wish instead to call for new social policy based on a tragedy model as they say people with major impairment can of course work, but because they are so special, their often minor impairments mean they clearly can not. They argue they support of course the rights of disabled people to exist but not at the expense of them seeking pity. They seem to be happy to steal the benefits of being disabled without accepting the consequences.

 

Disabled people fought against the sick role to be considered valid citizens who can work but the sick is fighting against the sick role to define their right not to recover and return to work. They are happy for fit people who are recovering to be nastily be declared unfit with all the notions of invalidity that goes along with that, assuming there is a notion of being unfit. While they create a list of impairments and labels they wish to declare unemployable and excluded from society, the reality is their conditions do not make them special.

 

WCA is not broken but society”s attitude towards the employability of people with all impairments is. I am not allowing the pity seeking demands of someone who think they are above the mechanics of society, as a special oddity, to destroy the public’s acceptance of the social model and therefore my right to exist as an included member of society.

 

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  


Why I would never calling myself a cripple

I would never call myself a cripple or a crip because that is not what I am as I am a spastic or a spaz! For me, the medical meaning of cripple relates to a spinal injury or other physical impairment, especially one received after birth as people become crippled.

This may seen odd semantics but I do not relate well to crip culture as a self-oppression defence mechanism, but I do see myself more as someone with cerebral palsy rather than a disabled person and I personally feel Spaz is more positive than Crip.

I know I played “the Cockney Cripple” in I’m Spazticus but this was acting which is different from my own viewpoint. Language is a complex and wonderful thing to express ourselves especially now Blogs like this can deliver it to the world.  

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

My Experiences of Pain


I imagine many of my readers assume when I say people with chronic illnesses can work, I am talking ideologically with no personal experience but that is not the case. As well as mild bipolar all my life, 4 years ago I suffered an acute nerve virus which left me paralysed for 6 months. While my function has improved within the limits of my cp, I have constant nerve and muscle pain.

I need to take 4 types of painkillers around the clock indefinitely.  For some people, this would reason enough for a long sob story about how terrible their life is and how they deserve not to contribute to society. For me, its just one of those things God or whoever has put in my way to make life more interesting. It has also enriched my personal experience so I am able to talk about pain and people can’t say “but you do not understand” as so many try to do.

I have never had to energy to work 9 to 5 but I have never suggested anyone should work 9 to 5. My pain does mean I need to rest more and I have built my life and my lifestyle about my needs. I also have the attitude to succeed rather than fail like others who demand pity from the government.

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

What does ‘being too ill’ look like?


Time after time I am hearing people on sickness benefits say it is okay for disabled people because they just has functional problems and we are too ill to work. But what does that actually mean?

I define work in the widest sense and as a basic, if you are able to use the internet then you are most likely to be able to work in some way. We are not talking 9 to 5 down a mine but to be able to contribute to the fabric of society.

But what does too ill mean? If you are in hospital or suffering from acute illness then I can understand you can be indeed too ill to work. But with chronic illness, to which I indeed have as well as cerebral palsy, we are talking about a level of manageability where the possibility of work is likely.

Many of the sick activists who claim they are too ill to work are appearing to actually demonstrate they can work by they own campaigning activists and I sure many of them will find jobs in user led charities as they come to terms with their own situations.

So I am left wondering what ‘too ill’ looks like and whether in reality it is about attitude rather than anything else.


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

The Hate Crime Myth

There is not a week goes by when I do not read something about the rise in disability hate crime which is crippling the inclusion of disabled people. I feel it is portrayed as something which affects all disabled people on a daily basis like Jews in Nazi Germany as a myth upon a myth upon a myth.

The reality is I feel after the Paralympics and the I’m Spazicus comedy, disabled people are enjoying a level of respect and a potential for true inclusion like never seen before. So why is the government giving £10m to user led charities to teach people to become victims of hate crimes, being over-sensitive to every little thing?

I think its a number of things. I think firstly some disabled people, especially those with newly acquired impairments, expect to be treated as china dolls, like people in hospital, and are unwilling to accept the normality that comes with inclusion and so they are wanting to be excluded from society as victims. Secondly, the people who are most affected by the welfare reforms do not want a proper debate as they know they would lost and so they shout hate crime to prevent a debate. And finally, the user led charities benefit from the exclusion of disabled people and hate crime is a fashionable way of doing it.

There is bullying but there are better ways of dealing with it, by empowering people to turn the other cheek and not be sucked into victim hood for the profit of others.