We Have Independent Living If You Want It

Independent Living has been an important component in the liberation of disabled people for the last 40 years but I have a feeling that many disabled people and others are confused about what independent living is. Currently, activists as a whole seem to be fighting for independent living in terms of additional legislation while defending independent living in terms of the closure of the Independent Living Fund.

This duality is confusing and I think it shows that independent living has so far been a difficult concept to define and so I wish to use this article to propose an initial definition of what I feel it means, and why I feel independent living is something we already have if people really want it and is willing to enter the mind set required.

For me, independent living is not about where you live or how much personal assistance you receive, although they are factors, but it is an attitude to life and living that enables people to embrace their personal rights and take on their responsibilities as interdependent citizens of society. It is about being empowered to make decisions and be able to take the related consequences.

I believe independent living is more importantly about having the ability to overcome the immediate barriers you are facing by problem solving and adapting to the situation as well as adapting the situation itself. While people currently attribute employing personal assistants and living in your home as markers of successful independent living, they are only a social construction based on the resources currently available and social norms.

An example of how independent living is more of an attitude than anything else is my observation of the disabled people I have met in Hungary throughout the 1990s. I was interested to see a lot more disabled people were using crutches as their main method of outdoor mobility, where in the UK they would have been more likely to be using a wheelchair or now a mobility scooter. The reason was simply that Hungary, including Budapest, was far less accessible than the UK at that time and so to retain their independence, many disabled people naturally found crutches a solution to this. I would guess things may now have changed with improved access and wheelchairs may now be more common.

Residential Care is regarded as the nemesis of independent living but while residential care is not for everyone, some people they prefer this type of housing and personal support. If we accept that standards in residential care has improved dramatically from the time when independent living was born, being in residential care does not necessary mean people can not experience independent living by adapting their environment to how they want to live.

We can empower people not to adopt the passive role of being looked after and actually become partners in the support provided to them. Whether people are in residential care, use a care agency or employ personal assistants, they can use charm and other techniques to manage their support as much as possible within the limitations of that solution. While employing personal assistants is portrayed as the dream solution, it can have as many difficulties and limitations as any other solution. It is only positive thinking and good problem solving that enables us to stay in control and experience independent living.

I am therefore suggesting that independent living is an attitude more than anything else, and that it is now up to policymakers to create programs of support that grows and nurtures this to enable and empower more disabled people and others to experience true independent living in the way they wish to live. It is also time for many disabled activists to stop fighting for independent living, often as a defence mechanism for their unresolved issues, and allow themselves to experience it for themselves.

from Simon Stevens http://ift.tt/1zTkzSI


We need to talk about Sue Marsh @sue2y2


When I first heard Sue Marsh has accepted a senior job with Maximus, I thought it was a joke! I know I may been a bit behind in providing my viewpoint, I was in Orlando about to embark on a Caribbean cruise when the news broke but I still think it is important I put my two pennyworth into the mix as someone who often sees things differently.
The first thing I must explain is that it is no secret I have not got on with Sue Marsh for the majority of the last 5 years, although people may be surprised to know we did get on for a few months until she wobbled on a comment I made, blocked me, and started hostile relations again. So I am very aware many people will read this article and see it as simply sour grapes, but that is not the case. This is my analysis of her appointment.
The first issue to discuss is her health. Unlike some people, I do not question the illnesses she has nor suggest her appointment suggests she is faking it, quite the opposite. Although I believe everyone can work, and she has proven with the right motivation, 75k a year, people will work, I would never suggest to anyone to make the jump she has. I do not believe anyone, sick or not, can go from not working for 20 years to suddenly doing a high powered executive job working 40 hours a week with lots of home work. Throw in long term sickness and it is a dangerous situation waiting to happen. Moving into work in a step by step process to build up hours, experience and confidence. I believe she would have been better being a self-employed consultant for Maximus, where she would have far more control over her terms of employment. She will find it tough and unlikely to survive the pressures physically and emotionally.
Both she and Maximus are crowing about her experience but what experience? The bottom line is she is a self-appointed Labour activist with a very prejudiced viewpoint so had simply moaned on Twitter for five years. As far as I am aware she never been on any formal committees nor worked with existing disability organisations, basically calling them all wrong. I know as a matter of fact she has taken credit for other people’s work. Her infamous blog is full of factual errors, lies, and things she just made up. In her new job, everything she says will be carefully scrutinised and her lies will be quickly exposed and blow up into maybe legal and criminal actions against her and  Maximus as her new array of enemies will play every trick in the book.
The bottom line is she is probably the least experienced disabled person for the job. But this job was a political gimmick and I am sure it was a corrupt backroom deal as the job was designed for her and her alone. The question is now whether this was a fair and proper recruitment and whether her fixed appointment is a breach of European employment law.
The issue that worrying me the most about her appointment is her attitude towards people with high support needs, those she has consistently referred to as profoundly disabled and naturally vulnerable, which shows a level of bigotry I am unwilling to accept. While she is now acknowledging people within the support group can possibly work, those who should be working anyway, I believe she will see her role to ensure more people with high support needs are easily written off and parked on benefits for their entire life out of pity and compassion. My belief comes from her blog and the consistent prejudices towards us. And because she is ‘disabled’, her prejudices will be accepted and celebrated by Maximus and others, ensuring the greater exclusion of disabled people. She has made it very clear to me by email previously she is not interested in the inclusion of disabled people and that now makes her very dangerous as someone nowresponsible for playing god in terms of who is allowed to work, and who is not.
I am unsure she understands what the job is going to be in reality. The tidying up of letters and procedures, the bit she is selling her excuses on, will only take a few months. After this, her main job, whatever the job description says, will be damage limitation as she will be the PR gimmick, the disabled person paid to tell the media and endless conferences how wonderful Maximus is and answer all the accusations of murder, corruption, incompetence and so on. It will be her job to provide endless statements to the Anti-disabled blogger, John Pring, in his vendetta against disabled people and the government. And because she will be paid £1500 each week, she will fool herself into believing in the organisationand quickly be the puppet they wanted.
I believe Sue’s greatest difficulty will be her inability to take criticism as well as her egoistic nature. Sue has never taken criticism very well, blocking anyone on Twitter who challenges her, and while I think she thinks she has prepared herself for the backlash, what she is getting now is extremely mild to what will be coming over the next year. She has easily made herself the most hated disabled person in the UK, knocking me off that spot by miles. How will she coped when she is heckled at conferences or receives the death threats, the same ones she denied ATOS staff received? Most disabled people right now do not know who she is, like they do not know who I am, and will not care about her background, just seeing an evil nasty disabled woman who is against the vulnerable need to be wrote off. Any reputation she had or thinks she had is already gone and even if she resigned today, her credibility with anyone is lost.
For me, if there was a battle between myself and Sue, she is just let me win. It is interesting that I got a lot of stick for trying to work with ATOS as a consultant on my terms. The reality is the only money I had was my travel expenses back from the only meeting I had with them. I did not sell out because I remain consistent in my agenda and methods, working as a consultant, being paid to tell them how crap they were. Sue has sold out because they own her and what she can now say in and out of work. I am sure they will require up her stop her anti-government blog and curb her tongue, because that is what they are paying her for. I think the real reason I was given a beating is because I believe in the abilities of everyone, and this offends the bigotry of those opposed to the inclusion of disabled people. Therefore, the fact Sue remained prejudiced may rescue her from the worst attacks.
So with all this information, my prediction is that for one or more reasons Sue and Maximus will decide to mutually go their separate ways within six months, and it will probably be as a result of her health situation as well as a couple of out of court settlement caused by inappropriate things she has said in her role.
The big question to ask is do I need to work with her and will she work with me? She is now paid to be nice to me and listen to what I say politely, even if she simply ignores it. Whether she will be prepared to do this and for example show good faith by unblocking me on Twitter is another matter! But is there any point to trying to work with her? WCA/ESA is a dying project that needs replacing with something better and I think I want to focus my energy on being a part of the solution, since she has chosen to remain a part of the problem!

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

Most Disabled People Just Get on With Their Lives

I think an important route to changing social behaviours and therefore attitudes is how people and issues are portrayed in the media, and this is why I am somewhat fixated by how disabled people are being portrayed by the media. Just last night I caught a piece on local ITV news from a family member who claimed that someone committed suicide because they had mental health issues and were found fit for work, basically blaming the government and demanding anyone with any mental health issues is written off and parked on benefits! Would someone like to suggest to someone like Stephen Fry that he is unfit for society because of his bipolar?

Disability is portrayed as a welfare issue, but for the majority of disabled people, their welfare benefits or lack of is probably the least of their problems on a daily basis. Whether disabled people work or not is irrelevant here, because the thing we need to focus on is they are getting on with their lives. I am not suggesting for one minute that their impairments are not causing them difficulties in terms of both their health, and in terms of environmental and attitudinal barriers, but that their immediate priorities may be far more simple than portrayed, like what is for tea or what are they doing tomorrow, just like anyone else.

Here is an example; I have just come back from a Caribbean cruise going from Florida. I would suggest that out of the 3000 guests that 10% had some level of mobility impairment. I would also like to suggest that very few of these guests on the ship that were worrying about their benefits or using Food Banks. Admittedly 80% of the guests were American and a large proportion of them were in their old age, but the principle is there. Also, most of the older guests did not fit into the frail vulnerable portrayal the media so often uses when they talk about health or social care issues.

Most disabled people, like most people, are not political or angry at the Government since they have more immediate issues in their lives like daily living, managing their health, education, employment and having fun without being portrayed as a superhero. Having fun and being happy in however individuals define it for themselves must be the ultimate goal for everyone, and yet the media currently seems to portray disabled people as living lives that are beyond the reach of happiness, which is absolute nonsense.

It is hard to properly describe what ‘getting on’ looks like because it is very individual and those who are getting on are silent in terms of expressing their views to the media, leaving it to campaigners and activists. On a personal level, I very much get on with living, it is just that I have chosen a career that involves campaigning and activism. I have however learnt to switch off from disability in my personal life, just sorting the issues that immediately affect me as they arise as oppose to spending my limited free time going to political demonstrations or other events. When I am on holiday, I like to actually be on holiday, and I try to save up any complaining I need to do until after I have enjoyed myself.

While disability will obviously remain portrayed as a welfare issue, full of ‘needless suffering’, for the foreseeable future until we tackle the deep rooted bigotry that exists, it is worth remembering like the rest of us, most disabled people are just getting on with their lives. The voices of disabled people apparently being heard in the media, often through the viewpoint of others, are from those who are motivated to be heard because of issues that directly affect them and their agenda, rather than being any representation of what all disabled people think, and that includes myself.

from Simon Stevens http://ift.tt/1CabTHe


Warning – May Not Include Disabled People

Over the Christmas period I realised that I was not really that interested in politics. My real interest professionally and personally is disability, especially how to practically implement social and other policies on the ground to improve the lives of disabled people. I want to be a well respected, if not liked, government advisor, working with senior civil servants to ensure the fine detail works for disabled people, rather than against them.

The problem with this is simply that right now disability has become a political issue in a way I am far from happy with. Disability has become an election issue but it is in a manner that is one dimensional and cheap, becoming unescapably linked with poverty and welfare dependency as opposed to independent living or inclusion. Many people from all sides of the political spectrum talk about the hardship of disability as simply emotionally weighted ammunition, with I fear very little understanding of the issues they are talking about.

The most important thing to understand is many disabled people are simply not getting a voice in what is being said about them. There are many disability groups who have a voice, but if you were to analyse the range of impairments and experiences they ‘represent’, it would be possible to understand they represent a minority of the totality of disabled people on all counts. They obviously have a right to their say, but politicians, the media and others need to be able to contextualise it in comparison to the views of other disabled people.

The problem with this currently is that the image of disabled people as burdens of welfare, whether ‘deserving’ or ‘undeserving’, fits neatly into the current political dialogue. This means the politicians and media are not interested in the right for disabled children to be included into mainstream schools, or the battle to improve general social attitudes. I feel that in order to get my agenda across I am constantly dragged into debates on welfare issues, something that does not really affect me however much people try to scare me, nor particularly interests me in its current form.

I feel since I am always asked this question, I should explain I do receive Disability Living Allowance, and Tax Credits. I am personally not worried by the pending changes as I know my level of impairment and confident I will still receive my benefits. I know this makes me appear selfish in this over-sensitive political environment, but why do I have to stress myself when my story is about other issues? I find it very interesting that when I start explaining the issues that I am interested in, I am asked or told I have to think about the disabled people living in poverty, as if it is the only issue that we are allowed to discuss.

Despite being labelled a loner and ‘wacky’ by those who dominate the political arena on disability, I know that are many disabled people who agree with me, who have chosen for a whole range of reasons not to shout about it, often because they are too busy getting on with life. Since disability is my chosen career, I want to be heard as well as changing and developing other people’s opinions, especially those who on the surface have totally opposed views to myself. I am too often told to ‘get on’ with those I disagree with in an artificial unity that quickly falls apart, or leave them well alone, but how can you make an omelette without breaking eggs? We all have a part of play in life and mine seems to be being controversial and causing mayhem to challenge others and open doors.

Disability will be talked about through the bitter election ahead, but when the term is banded about as a synonym for poverty, it is important to question if this is merely political hot air, or really what a range of disabled people believe and think? I doubt in most cases it will be the latter and I fear the general public will sadly remain fooled into seeing disability as just a welfare issue without ever hearing from all disabled people.

from Simon Stevens http://ift.tt/1Ipn8eI