Is ‘User Involvement’ used to keep people disempowered?

I have been involved in User Involvement in one way or another for the last 20 years and it is important to say I am not against the principle at all. However, a few weeks ago I briefly saw a photo of a slide of a title of a paper presented somewhere by Peter Beresford, and it suddenly made me realised that the way user involvement is often implemented is a con, simply designed to keep people disempowered.

After 25 years experience in any field, I should be at the top of my game and paid accordingly, but when it comes to dysability, the being paid part is not there. If I was non-dysabled, then certainly the big fat salary would be on the table. But as a dysabled person, I am supposed to feel grateful that I have a voice in issues that affect me.

‘Service Users’ are starting to be paid for their time but getting paid as an ad-hoc contributor is time-consuming and bureaucratic, and most importantly not comparable to my non-dysabled peers. I have sat on too many committees where I have the greatest experience and expertise, but I am the only one not being paid a middle-class salary.

Is user involvement simply tokenistic? By calling us users rather than partners, it is simply a way to drain our expertise from us, often to improve their own career prospects, without paying us? And who is controlling the agenda?

I have reached the conclusion that user involvement is now simply an exercise to disempower us, by ensuring the professionals keep the control. And I fear because ‘user-led’ organisations have carved their survival by paying the user involvement game, reinforcing dysabled people as unpaid experts, they are not the way forward.

Dysabled people can no longer be perceived as the experts simply because they have impairments. I also do not believe anyone can represent ‘all dysabled people’ since it is an issue of understanding, not a democracy. We need dysabled professionals who are experts in dysability issues, and paid properly to convey relevant information to organisations who are required to know about these issues.

Lets move beyond user involvement, and start having professional engagement on dysability issues so those of us who know what we are talking about can be properly paid for our experience and expertise.


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

Dysability is an issue, not a democracy

A few weeks ago I had a twitter exchange with the Socialist Health Association, where they appeared to challenge my expertise as a dysability consultant because I did not always make it clear other dysabled people have different opinions to myself. They then went on with the usual tactic of saying how lucky I was I had a voice and other people are not as strong as me.
This annoyed me because of a number of reasons. Firstly, I have endlessly stated I do not represent anyone else and I have actually formally positioned myself as having a viewpoint that few people will admit to having. I can only say what I believe with an individual with no formal title other than my own. If I had to disclaimer everything I say because it is not what others want to hear from a dysabled person, there is something very wrong with free speech.
I am also tired of people assuming the fact I appear to have been successful in life somehow means I have had it easy! I have learnt the hard way you can not compare one person’s life experience with another’s. To experience the fame I have, I have needed to put the work in and sacrifice things like family to achieve this. I am a natural leader and I take this responsibility very seriously, especially at a time where the bigotry towards dysabled people by ‘disabled activists’ is at an all time high.
The most important point is that dysability is an issue, an academic discipline, and not a democracy. Many dysabled people over the last 50 years have carved out a level of thinking the average dysabled person will not understand. At a policy level, people like myself have to make decisions on all the information and factors. This is like the science of how supermarkets are laid out, built on many years of learning. A supermarket should not have to change its layout because one shopper disagrees with them.
It is easy to be a protestor demanding more money, cheaper goods, better pay etc without ever having to make the important decisions in the wider picture. Most dysabled are consumers, with consumer understanding of issues. I am a professional, because I have worked over 25 years in the field, trying to fit the desires of dysabled people into the bigger picture, making the difficult decisions most people do not see or understand.
It is time the Socialist Health Association and other organisations respected professionals in the dysability field, and did not see us all as amateur protestors, which has been reinforced by under paid ‘user-involvement’. It is easy to demand a better world, it is however much harder for those of us trying to deliver it.

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

Most disabled activists are against real sick and dysabled people

Last week David Cameron made a great point when he said that Britain was not Twitter. His point was that while Twitter is dominated by left wing activists crowing about owning the moral high ground, it is not reflective of the true feelings of the general public, which was shown by the general election result. This is absolutely true when it comes to disability activists, which appears to have very little to do with real sick and dysabled people.
Over the last 5 years I have witnessed people come out of the woodwork and proclaim themselves as ‘disabled activists’. But they seem very disinterested in the complexities of dysabled people’s lives and more interested in point scoring and eliciting pity for a section of the population they feel are naturally unable to be fully included into society. They take the complex lives of dysabled people and squeeze them into cheap and nasty headlines, simply to attack the government. They talk about cuts without ever offering new solutions, turning dysability into a welfare issue.
I have discovered these activists have a few things in common. Firstly, they are all believers of left-wing trade union politics, and they are certainly members of Jeremy Corbyn’s army of supporters. This socialist framework sees disability as a welfare issue, a burden a compassionate society must meet without ever tackling inclusion. Secondly, they all tend to be older and bitter, often with an undescriptive physical or emotional condition. One label is never enough for them and they have a list a catalogue of minor conditions to justify their ‘disability’ status. And finally, it is all black and white for them, they can not debate rationally, attacking anyone who challenges their endless myths, so much for an era of kinder politics.
Two activists stick out for me right now and these are Frances Ryan and John Pring. Frances writes the same disability themes anti-cuts article in either the Mirror or the Guardian each week. The words may change but the angle remains the same, how dare the government support dysabled people to make a meaningful contribution to society. She believes people who can not be ‘cured’, which would include myself, should automatically be parked on ESA. There is no depth is what she writes as she uses myth after myth to justify her self-righteous rhetoric, simply I believe to suit her politics rather than any compassion for the complex lives of sick and dysabled people.
John is in a league of his own and he is potentially becoming a very dangerous weapon in the left-wing attack against real sick and dysabled people. In the guise of journalism, he has become the publicity tool for too many left wing disabled activists as he deliberately ignores or attacks the voice of dysabled people that does not fit his world view, something he has directly told me himself. He is morbidly obsessed with trying to link the complexities of suicide to WCA, endlessly accusing the DWP of mass murder, without revealing what he wants from this. Rather then focusing on the failures of NHS mental health and other services, in pinpointing WCA as a stressful event to be avoided rather than supporting people to embrace, he is suggesting sick and dysabled people should be automatically written off as better off dead, based on the prejudices of others. If ‘stress’ is something to be avoided as opposed to being overcome, the final solution to this is genocide. This makes John and his agenda very dangerous.
As I keep saying, dysability is far more complex than to be simplified for cheap party politics. I fear most disabled activists have very little understanding of dysability issues, nor have any interest in learning. For them, disability is the new term for poverty and hardship because it creates pity amongst the general public. Their goal is a socialist government and the promise of a something for nothing welfare system.
History will look back with distain at how these activists have abused real sick and disabled people for their own agenda.
*You may have noticed I am now using the term dysability as opposed to disability. Where disability means a lack of ability, dysability means a difficulty in ability, that can be overcome with appropriate changes, assistance and support. This is more in line with an advanced understanding of the social model and represents a new era of understanding.

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

Why do many people perceive me as having learning difficulties?

I think to start this piece, I believe it is important for me to clarify that I have nothing against people who have learning difficulties, but it is not something I personally have. It would be like a straight person being mistaken as gay, it does not mean they have a problem with gay people. In many ways, because I experience the specific discrimination many people with learning difficulties face, I may have a better appreciation. This would be exactly like the straight person who is mistaken as gay experiencing homophobia.

My intelligence is my biggest asset and it has been my escape route from social dependency and simply existing, as opposed to thriving as I do.  This is why I can become sensitive when I feel my intelligence is being undermined. I know my physical appearance as someone with jerky movements, speech impairment, and someone who drools, leads many people to assume I have learning difficulties. I also know wearing a helmet, a choice I have made, also does not help the situation.

People assume having a learning difficulty means you do not understand things around you, you are unable to make complex decisions and basically you are stupid. The thing is people with learning difficulties are not stupid, they just process things differently. So even if I had learning difficulties, I would find their behavior inappropriate and offensive. When you understand that I am often far more intelligent than those who believe me to be stupid and slow, you can begin to see my frustration. If I could speak all the words in my head, without having to simplify them so others can understand my speech, I could shred patronising people into neat pieces before they knew what was happening.

I have discovered the only way to prove intelligence is dry comedy or personal insults. Everyone can learn positive phrases to repeat like parrots. If I start to list my many achievements, people can just assume it is all in my imagination as I can’t really evidence any of it. And saying I do not have learning difficulties simply sounds I am being over-sensitive as it is evident to them I have. But being able to make someone laugh by making a witty observation of something immediately happening, as opposed to a poorly delivered rehearsed joke, takes intelligence.

Personal insults, as oppose to simple swearing, based on someone’s characteristics, is harder than it looks and shows great intelligence. It is not a technique I generally use, but I have a friend who is non verbal and uses it often, especially when he is managing is personal assistants. It is more banter than anything else, and a way to show his personality.

It is hard not to make assumptions as everything we do is based on assumptions. We assume a door with a sign with a man on it is a male toilet. The trick is knowing what assumptions comes from the evidence we have, and what assumptions we have made that actually lack evidence or it is from false evidence. Do the general public need to know whether or not someone has learning difficulties if that individual can perform the activities they need to do, like travel on a bus? People can assume I have a speech impairment because it can be seen, but they can not conclude that means I have learning difficulties.

Having my intelligence being undermined has been a lifelong struggle, and one that is likely to continue for many more years, mainly because of my speech. I can just hope slowly and carefully, the public understand of the issue will increase.

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