NB: This article was originally commissioned by Disability Rights UK although they have declined to publish it because they disagreed with my perspective on ‘hate crime’.
In the article I wish to explore the current state of disability as a socio-political issue, discuss why I believe user-led charities and informal disability organisations have taken the wrong approach to the government’s welfare reforms, and to examine a way forward to taking the liberation of disabled people to the next level.
I want to begin by explaining who I am. I am 38 and I currently have cerebral palsy to a significant level, mild asthma, acute nerve pain and mild bipolar, which combined makes life interesting. I work every hour I have as a leading independent disability issues consultant, trainer and activist and I have over 20 years experience in the disability issues field working with many organisations on many issues.
I am not sure if I am a member of the so-called movement or not, some would argue I am a traitor to the cause, but I do share many of the goals it claims to aspire to, even if I do not agree with the methods. As someone independent, I like to make my own mind up on issues and I am used to being attacked if I do not conform to how others want me to be.
Current State of Play
In observing the current state of disability, it is immediately clear to me, the change of Government in 2010 totally changed the attitude and direction of user-led charities. Just as we were reaching the climax of the social model agenda for disabled people, a whole new generation of people defining themselves as disabled but were more likely simply impaired, or has some level of long term ‘sickness’, were stirred into action and I feel destroyed and twisted the social model back to a medical model way of thinking.
We do not yet have an accepted language for what is currently happening in terms of the battle between people with differing levels of impairment but we need one as the term disabled people has now been expanded to include so many people with a vast diversity of impairments. For the context of this article I shall defined the new generation of ‘sick people’ as meaning long-term impairments which may not generate a social model disability like mild diabetes. I know this is not a ideal term but I have been heavily criticised for creating a divide, as “we should be united” but people who often align themselves as members of a sick movement also use a divide when they talk about the severely disabled. I have even heard proudly ILF users being called Profoundly Disabled, a term which I find so offensive.
The motive of this new active sickness movement appears to be cold hard cash in a belief I feel they have rights without responsibility. Because people with often called hidden impairment are often newcomers to the issue of disability and they will have learnt their ‘sickness’ through medical professionals, it can be assumed they are most likely to live the medical model and if they understand the social model at all, they will have picked the bits that suit their way of thinking. As a result, they appear not want equality or inclusion, but simply pity in terms of the state looking after them with cash. I am therefore shocked that it is now acceptable in the movement to call a disabled person ‘broken’ and being asked to take some responsibility is compared to what happened to disabled people in Nazi Germany.
User-led Charities are charities because they rely on state and public funding as well as volunteers. I have always found them strange as they clearly reinforce the notion disabled people are unemployable and actually many disabled people do not have time for paid work because they are forced to work for free for these charities, who often control their access to public consultations. User-led Charities were once the solution but they are now dependent on dependency. If disabled people were fully included into society, as they could be, these charities would not need to exist and so it is in the best interests of these charities to keep disabled people believing they are second class citizens. They have therefore found it useful to adopt the agenda of people with minor impairments as disabled people.
This has led to the rise in medical model pity and a rights without responsibility culture. I am so fed up of people appearing to sit on their bean bags and demanding the government makes everything perfect for them without any desire to do it themselves. Equality and inclusion does not come from having rights but rather taking responsibility. Everyone has struggles in their life and disabled people can not demand to have it any different. I am very weary of this move to teach every disabled person to be over-sensitive about how people interact with them, crying potentially “hate crime” at any little thing they find unacceptable. I do not believe hate crime is a constructive way to identity and resolve issues of bullying, crimes involving disabled people or the current media debate of disability issues. I believe the notion of hate crime can create unnecessary victims when it would be better to enable and empower individuals to refuse to be victims and ensure crimes against disabled people are not treated as something different and special, to be rationalised away.
Bullying is not nice but it is a part of human nature and if disabled people really want equality than they have to take the rough with the smooth in terms of taking some responsibility for their interaction with other. On an academic level, I see similarities to how black people were hyper-sensitive in the early 90s but despite much process being made everything was “’tis because I am black”. Now we have people saying “but I am disabled” for reasons why they do not take responsibility for their actions, which means very little. There is a negative attitude right now we must sort out so disability can move forward. Right now the medical model is back in business and without realising it, being demanded by many of this new generation of disabled activists. I however believe like how society has embraced black people as diverse individuals and black people see themselves as more included, this can offer disabled people a seek preview of how they are on the path to inclusion.
Avoiding the Obvious
In examining the welfare reforms, I would say I am generally in favour of them although as I will explain it is not what I would do, I have something more radical in mind. I do not want to get into the detail of the reforms as that in a debate I am really not interested in. What I would say is the user led charities and those who been obsessive about the reforms would like people to believe this ‘20%’ or ‘half a million’ people who will lose their DLA which has been used as figures banded about, is going to be completely random when this is not the case as common sense says the new assessment process will have some logic to it. The people most likely to be affected do not have the public support they needed to keep the cash they want and so they have needed to imply that it will affect all disabled people when I am really sure that it will hit those with less impairments who are not disabled.
The first reality to face is we are in a new economic climate where we are seeing the very start of change. We could blame the bankers, the Tories and anyone else we want but it is not going to change where we are. I hate the term cut as I believe we can be smarter with money and improve life for everyone by doing things differently for less money. So as welfare is one of the biggest budgets in government, it needs reforming. We make not like it but life is not always what we want and sometimes it is better to grit our teeth and work with what we got rather than simply refuse to play ball.
The second reality to face is there is a level of abuse of disability services and benefits. It may not be reflected in the fraud figures but one reason for that it is so easy to get things and we are talking about something slightly different. I would say it is chronic abuse because with the disabled and non-disabled people I talk to, there is a understanding and almost a collection of urban myths that people are using services anyone may be entitled to you in a manner which has twisted disability into a perk, which can be hard for people to accept. Right up to the late 90s, disability was a stigma no-one wanted and so if we were brave or foolish enough to say we were disabled, the pity people had meant people just got what they wanted or needed. But now, we have a generation that wants to be disabled because of the benefits they see disabled people having, clearly not wanting the downside. They also feel they have the right to be disabled as an excuse not to work and here is the mess we have now.
While what I am saying may be very hard to accept it is a reality we must acknowledge. It is now accepted that everyone has impairments in one way or another and under the social model only some impairments lead to socially constructed disability. Logic dictates to me, as access and opportunities have improved for people with impairments than there would be less people who define themselves as disabled. But the numbers have increased and this means more people are choosing to take benefits and use services many disabled people need, who do not have a choice of if they want it or not. A scary statistic is that one leading regional airport is having a 18% increase on the number of passengers requesting assistance per month! With the sickness movement controlling the agenda and with a decreasing resource, I can see it will be the ‘severely’ disabled who will pay the price. Someone who is impaired or disabled today, but were not yesterday, are most likely to have to same prejudices and pity for ‘real’ disabled people as anyone else, as well an unwavering trust in ‘carers’, and this can also support the so-called assisted suicide movement and a rise in mercy killings which will be blindly supported by the new sick and disabled movement.
The third reality to face is disabled people must take responsibility and start making a stronger contribution to their life and society. Since in DDA in 1995, the Government has given disabled people almost 20 years to come to terms with rights and start saying thank you by meeting our end of the deal by taking responsibility for our inclusion into society. Unfortunately user-led charities have grown comfortable and fat in fighting for rights, keeping disabled people disempowered so they can profit from saying how bad life is rather than supporting disabled people to be positive about the many opportunities they have. Time is running out and if disabled people do not take owning their responsibility, the government will step in and force it upon us which is what starting to happen.
It is ironic that I seem to observe that it is often people with significant impairments who want to work and achieve, and do so accordingly while it is people with far less to complain that believe they can not work. I strongly believe disability is 99% attitude and I do believe where there is a will, there is a way without having to be a super-hero. User-led charities like to portray disabled people are always in poverty and at risk of residential care if the smallest thing goes wrong for them but how accurate is this? Does God really look at someone’s bank statements before decided to add an impairment to their story? We have the technology for people to work in ways like never before and I argue to someone can blog than there can work or make another meaningful contribution to society however full. It is about A for effort but attainment.
I feel user-led charities find it easy to spout 1970s demands in a hostile socialist manner but is this really helpful? They can not ignore the bigger picture and the fact that the issue of disability has changed radically in the last 10 years. It may be easy and even fun to throw rocks at the windows of government, taking the position of self-segregation because it is nice and clean. But to make a difference, you must get your hands dirty and work with the people inside of issues you may find uncomfortable. While the user-led charities work with the scraps the government gives them in the Office of Disability Issues, dreaming of a long term plan that will keep everyone in jobs for a long-time, in the real world, the Department of Health is proposing to hand the lives of ‘real’ disabled people to their carers and providers of warehousing services to do what they want with without any real input from disabled people, apart from the usual rock throwing. And why? They are too busy entertaining the sick movement’s demands of cold hard cash without question or responsibility. Disabled people are now not being supported that the organisations that demands of be paid by government to be ‘their voice’.
While I have been critical of the movement and maybe thrown a few rocks at their windows myself, I do have the solutions to how we can move forward from the current mess we are in. Firstly I feel that we need to avoid getting bogged down in the arguments about DLA and PIP. In the last year, I heard DLA being called as everything from a social model success to the difference between life and death. It is a maximum of just over £6500 per year which is an unmeasured amount of compensation given in pity based on a medical model. And PIP is an unmeasured amount of compensation given in pity based on a medical model. The only difference is people will be assessed face to face which could actually make it easier for some people to get rather than needing to appeal.
But DLA is a confusing benefit which fails to encourage inclusion and PIP will be the same. What I would do with them is scrap them both as well as ILF, Access to Work, NHS Continuing Funding and local authority funding, and replace them with a single care and support fund which is nationally regulated and locally delivered. Without the current eligibility criteria, there will be a universal right to basic care as needed and support will be funded in terms of outcomes. So rather than people saying “I have this so give me that” they will have to identify the additional and individual barriers which prevents them fulfilling their outcomes, whatever they may be. So someone can’t simply say they can not use transport without a reason to travel somewhere. These outcomes will be culturally and economically relevant to their circumstance and so if someone needed support for a business trip to Budapest, they would need to be able to afford to go if they did not need support. So the right is the right to fulfil their potential without additional difficulties and there would not be entitled to services simply because they are disabled.
I believe this links more closely to the true meaning of the social model in the way the current system does not. Support could be a direct payment or direct services or investing in things which have communal benefits like drop kerbs. As well as support to assist people with their current potential, I feel disabled people as well as everyone should be enabled and empowered to raise their full potential physically, mentally and emotionally. User led and other charities feed upon the negative attitudes of sick and disabled people and do not support them enough to come to terms with their conditions and their full potential, as it is simply not in the best interests of the charities, who are paid to give out fish and not teach people to use fishing rods. User led charities could become proper businesses, not patronising social enterprises, that support disabled people to sell their expertise to government and businesses in a way that is meaningful.
I believe in providing people with what they need when they need it rather than institutionalising them into a system that teaches them to accept a second class existence. They will be more willing and able to use their rights to take responsibility to contribute to society because it is no longer government or society which are denying people that opportunity but disabled people themselves. The more disabled people huff and puff about how unfair life is, the less sympathy the public will have as they see disabled people wasting the opportunities offered to them. I am an enabled empowered responsible citizen and you can be one too if you really want it without fighting another 20 years for rights we already have.
This lengthly article is my own viewpoint on disability as a issue. I know I appear to make a lot of sweeping statements but if I were to build my case block by block, it would need an article 10 times longer as disability is a very complex issue and it can not be simply simplified. I do acknowledge what the movement has achieved in the past, more than most, but I am talking about what I see right here and right now. As someone with a significant impairment, cerebral palsy, I have no organisation who represents me as someone with cerebral palsy, or indeed someone with a significant impairment. I am told we are united for what does this mean as the term ‘disabled people’ has become meaningless.
We are individuals and we have the right to be represented in as many ways as we want and not this single way the movement has always demanded. Rather than letting the sick movement get on with whatever they want and real disabled people helping themselves for a change, we have a situation where people I did not elect, who I do not know, who see disability very different to me and have little in common with me, feel they have the right to steal my voice and control how I live, how I think and often deny me the right to be positive.
I know what I am saying will not be popular or liked but sometimes unpopular change is the start of liberation for a group of people. I am not personally worried about my DLA or PIP and social care funding as god help anyone who tries to cut it. I am however very worried at how the sick movement have taken over the disability movement and promoting medical model pity as if it was the social model. Many disabled people see what is happening but they are too busy living their lives to try to make a difference. Well, I am willing to put my hand up and shout the emperor has no clothes, maybe so everyone can start breathing again and get away from politically correctness and be more honest about these dark and dangerous days for real disabled people.