Does he regret doing a Q&A session with the Guardian? Probably not. All publicity is good publicity and here’s some more.

Does he regret answering the following question thus: “Which living person do you most admire, and why? Amber, my aunt, and her boyfriend, Gian Luigi Valino – he has primary lateral sclerosis and she cares for him”. Once more dear friends we find celebs diving deep into the morass of the tragedy model. Boyfriend (note that word) Gian Luigi Valino is a hero for having an impairment. Well done Gian Luigi. Surprisingly Aunt Amber cares for him. Hello!!!! I care for my girlfriend. I also love her, I spend time with her. We have fun together. My word, if i recall correctly, we went out together last night to a party and when she got tired I cared for her so much we came home. So what? Some readers might say. So what? I get tired of being seen exclusively through the confines of my impairments. A lot of us do. We get tired of not being seen as the other things we are and could be. We get tired of having our Aunts asked whether or we take sugar. Does Benedict regret this blandest of all statements? Probably not.

Does he regret this question and answer? “What keeps you awake at night? Fucking foxes.” He should do. Who would he want to know about that? Benny boy fucks foxes?

I dunno really. I’d have thought an actor would have had a love of words. I would have thought they’d know how to use them, even the big ones like ambiguities. That they don’t can be so saddening. It can affect how we feel about our heroes. Knock. Knock. Who’s there? Doctor. Doctor Who? Don’t you know Sherlock.

I am also mindful that I am an old New Voice, selected by Disability Arts Online to receive training that will improve my writing. I commit the rest of this entry to them.

Arriving at the meeting place I am once more concerned about the turn out. What kind of activism is this? Why are there so few people in a once proud movement turning up to help safeguard our own through lobbying, picketing, direct action? Indeed who is this I stand with today? The clearest banners read Single Mother’s Self Defence and Kilburn Unemployed Workers Group.

Few Activists Gather Opposite the Lords

I see an old activist friend, Clare from Winvisible. I say is this it? Where is everyone? She introduces me to Joan from UK Uncut who asks me who i’m with. I say that, i’m used to being with DAN, the Disabled People’s Direct Action Network and explain that we are a bit sleepy today. I take a picture of them both, breaking photography laws by looking down on a wheelchair user. Truth is i’ve taken so many pictures of Clare and more correct photos of her will appear later. Suddenly I am interested in a coalition of mutual interest, For the first time ever I am looking outside the confines of the Disabled People’s Movement and taking an interest in what people are saying.

Clare from Winvisible and Joan from UK Uncut Oppose the Welfare Reform Bill

If the clear message is to oppose welfare reform. Why do it? What does it affect. Clare’s placard says what is at risk.

Clare's placard shows what is at risk

She is chanting into a loud-speaker. The people behind her join in. The chant is ‘Welfare not Warfare’. Alternative strategies could be adapted if cuts really have to be made. But it feels strange to me to be listening to this. No chants originate from the movement. Other placards seem to show a lack of understanding about disability issues.

Mad Pride, Single Mothers' Self Defence, Kilburn Unemployed Workers Group show off their Banners

I am puzzled by the Mad Pride banner that describes the Benefit Cuts and Condems as being ‘mental’. This is clearly a pejorative term. The issue is something that people see as being pejorative and some feel members of the coalition need to be treated the same way but….’mental’. Does it make it ok if mental health service users and system survivors say it? Is there some  kind of recognition going on in terms of what is and what is not mad? If I am proud of being mad do i want to share the term with my enemy? At least Dave Skull when he takes the mike is clear and simply gives the outstanding speech of the day (which is something that i cherish Winvisible for – I have seen them sharing the mike for 10 years now, giving a voice to anyone with something to say).

Dave Skull Takes The Mike

I also cherish the protestors whose banners talk about the consequences of Welfare Reform, ‘Cuts Make Women and Kids More Vulnerable to Rape’, ‘Cuts Equal Racist Attacks Of A Financial Kind’, ‘Cuts Put Women On The Street’, ‘Welfare Reform Bill – Drives Women into Destitution and Prostitution’ and just here ’1 Year Time Limit on Sickness benefit = Assisted Dying’ which has been the DPAC line for a while now. Remember ‘ATOS Kills’

Protestor Links Benefits cuts To Assisted Dying

Other placards just betray my own prejudices; ‘Lords Help Us’, a play on the christian democracy that led us to this mess (Blairism) and ‘Single Mom’s and People with Disabilities All Deserving and Entitled’. I’m a disabled person. Get used to saying it. I don’t want help. I want rights. Yes, there should be no distinction between deserving and undeserving. Lets destroy that old christian idea once and for all. It’s not helpful. Its medical model in that it leads to the construction of testing through eligibility, it causes division.

I didn’t stay long after shooting my roll of film. I’m not sure I belonged with this group of activists or not. In terms of the aims yes. In terms of the style, in terms of the overall presentation and language – well, it’s very mixed – but, because i was there for the moment maybe I can share in the success because this was not the last day of the lords. This was the day the lords made the right stand, this was the day they drew a line, extending the period of Employment Support Allowance (ESA), ensuring that cancer patients received benefits for a longer period thus enabling recovery and the day when young people receiving ESA also received a contributory payment to their pensions. And this was the day that I wondered what is the movement all about today, where are we, what are we doing, is it enough?????

Just time for a favourite photo from the action. I like the smiley face, i  like the  suggestion of a clenched fist and i like the hat. Good activism style and the extra idea of a new local contact. We could all bc friends one day.

Kilburn Unemployed Workers Group Rep and Placard

Yes  News Hounds, the Prince named Phillip spent xmas in hossie. Ah what a tragedy. But he got up having had his heart tweaked and he went for a walk. How brave.

Ladies and Gentlemen we give you a royal presentation of the tragedy model in action. Tragic and brave. And all the news you want to hear. All the news that is fit to print. I must say that my opinion of Prince Phillip has now gone through the ceiling. He walked all the way to church with a son (the bald one. Ok then. The bald one who didn’t have an affair). He was superb. I have never seen such a wonderful walk in my life.

Just one question. Who do I have to send the money to?

Whilst i’m very pleased to see that it has gone into public ownership and is still promoted through DAN and Dennis in particular I just thought it would be good if I could claim my own part in our collective history.

So, DAN’s Sick Note….. It goes like this:

After much consideration yesterday I finally decided upon my favourite word.

It is perimeter.

I looked up the definition and that’s very nice and precise and stuff but does not really touch on the meaning i apply to it. Maybe I should have another favourite word.

For me the perimeter goes around somewhere. It is neither in nor out. It is on the edge. Neither included nor excluded. It is a good pagan word. It is between worlds. It is where i prefer to be. Not in but looking in. Not out though far enough away to be safe. A place where I can choose what my part will be.

I have been given space for 6 weeks starting in September to create and curate an event. I have walls to hang things on. I have a stage. I have slots to hang a programme on. These will be at lunch time and two night time ones.

I see an exhibtion, a sofa to chat from and performance.

I have a one word brief. Representation. Representation of communities, representation of an idea.

My benefactor asked me to do this after he heard me talk up an idea about work that i wanted to put on. I was telling him about my photography work within the disabled people’s movement. I was telling him about the training that i do in advocacy and disability equality. I told him that i wanted a space where i could bring these things together.

Do you want in? What would you like to see at the event. What are your ideas. What do you represent? What do we need to bring in from the perimeter? What do we need to make central?

I would very much like to hear your opinions.

1) I have been asked (8th December) to consider the above image by Stephen Lee Hodgkins (copy right  protected) for entry at the exhibition. I am looking forward to receiving more entries. A  link to his film Crip Noirappears in the comments below as well as here. Stephen says: “

Joke Lore – Drawing on Freud’s ’Jokes and Their Relation to the unconscious’ this piece reflects on the sinister side of ridicule to explore how comedy is used to maintain the Other to be outside of acceptable social conformity.  This is deliberate however and as through its construction of abnormality, normality is allowed to define and promulgate itself. The Joker or Fool, historically often associated with disabled people’s’ identity, can be reclaimed as an empowered signifier of diversity, inclusion and alternatety”. 

Under the affirmative model we accept our impairments, we live with them. We say “I have this impairment. So what?” “I have this impairment but I would not want to live without it”. Such statements promote affirmation, they identify impairment as being intrinsic to who we are just as skin colour is intrinsic to the identity of some people, just as gender is intrinsic to being man or woman. We know who we are, we know what we are and what we could be. The social model of disability allowed such challenges to be made. Some of us may have already been making these challenges without prior knowledge or involvement with the social model. I know I was. Way back in the early 1980’s I would say; “I am a 6’6”, stammering, asthmatic, from West Bromwich, prone to mental distress”. The implication being if you can hear that, if you accept it, then you must deal with it or get off of the train I’m travelling on. Interestingly whilst my height, town I associated with, the class elements that raised in my mind are not impairments they were elements which I saw as creating barriers to my development and to the people who would identify themselves in a like manner.

To be able to make such statements was a real development for me. I had stopped wanting to be like everyone else. I knew that I was too slow and too unfit to ever be a baggie. I had begun to learn that just because I could not speak as others could did not mean that I was stupid or the faces that I pulled when trying to speak did not mean that I was ugly and undesirable. I believed that you either accepted me, included me or you moved on, not worthy of my friendship. I had lost interest in health. Being fit was not my concern. Someone else could worry about it if they wanted to. So I had already individualized my condition. When I spoke of freedom, getting out, dropping out, it was for me and only me, but I could empathise with anyone choosing the same way forward. If society did not want me I could do without it (excepting the benefit system, or loan system in education, of cause). I was not however ready to take on a political response to discrimination. I would need an understanding of the social model to achieve this.

I note that at this stage in my life I was emphasizing my impairments, not hiding from them, not covering them up with language and terminologies I would later adopt. The social model gave me a new label to proudly wear. Disabled Person. A person who is disabled by an experience of discrimination that exists within society. Even now as a disabled activist who is proud, angry and reasonably strong I will refer to my impairments. I do not think I could fully affirm myself if I was to ignore them and simply look at the barriers that had been put in front of me. Which leads to a different assumption. This is that the affirmative model whilst allowing for personalized, individualized responses should not as I originally understood it, build on and challenge the tragedy model but be an outcome of the social model and maybe help me to address other aspects of who I am and what I want whilst also engaging as an enemy of discrimination. The affirmation model may have built on the social model but is there any way that it can work hand in glove with it (should your own impairments allow). This makes me wonder about a medium term aspiration that I should look to change my own mytholgies about me based on my past lives whereas I should be looking out at last to see the person that I could be. What possibilities do the affirmative model hold for me? What are the possibilities? Can I project myself into an even better present and future? Aret here mindsets I still need to change?

Colin Cameron’s Definitions

Impairment equals physical, sensory, emotional and intellectual difference divergent from culturally valued norms of embodiment, but which is to be expected and respected on its own terms in a diverse society.

Disability equals: a personal and social role which simultaneously invalidates the subject position of people with impairments and validates the subject position of those identified as unimpaired

Such definitions assume a friendly mainstream within today’s and from out of today’s societal reality. They assume that the social model was always about disabled people using the social model to ensure that they were involved in the mainstream. I would argue with this. For me the social model was always about challenging discrimination within the mainstream, causing it to change and guaranteeing a future inclusion for all. This is why Barbabra Lisicki in her disability equality training always found room to discuss the differences between inclusion and assimilation. Under these definitions, as welcoming as the new understanding of impairment is, the affirmative model without the social model would always lead to assimilation on society’s terms rather than inclusion on our terms.

Testing The Affirmative Model

I have always tested models of disability with roughly the same set of questions which I will use here to test the affirmative model. In doing so I must express the concern that I am still not au fait with the affirmative model and I am being subjective in my own responses to the questions that I set.

1) Who is involved in the affirmative model?

Ultimately I am. You can be too. We can all be if we are ready to engage?

2) What does the affirmative model say about disabled people?

Colin Cameron’s definitions as expressed in the discussion with Colin Hambrook are quite clear. If we look at impairment we look at divergent differences within the body/mind that are to be expected and respected within a diverse society. In this respect impairment becomes a normalized expectation which does not of itself lead to exclusion or segregation. Society recognizes us as we are and accepts us in a welcoming way. I would agree that this is a position that many disabled people already find themselves in. History would determine that some of us have always been thus. Just look at famous crip exercises. Society for all its oppression as not stopped some of us exceeding expectations for good or for bad. Society however still expresses a cultural norm. Society is not challenged to be better than it is or as good as it can be. As disabled people we can expect to prove that we have a personal position and a social role. This, it is implied, is no more and no less than what we want it to be.

3) What can the affirmative model do for disabled people?

It would seem that the affirmative model is designed to make us feel ok about ourselves. We are able to confirm our own positions and make our own statements about who we are and where we are in society. It gives us the same values expressed in ‘Proud, Angry and Strong’.

4) Who has power under this model?

The model is individualized. It is for us to assume the power that we can take within a welcoming, assimilative, and diverse society. Some of us do this already. Though maybe those who do still struggle with the perceptions that surround and engulf them. However should we choose to confirm then we do not have to subject ourselves to the rigours of Super Crip Syndrome.

5) How is the affirmative model useful?

For those of us who already define as proud, angry and strong we know for ourselves how beneficial it is to be able to define as a disabled person. We are more than comfortable with ourselves. The usefulness is for those who have yet to affirm a positive identity for themselves. In its existence the model allows for promise, potential, aspiration and dream to be realized. If we accept that the model is here and it works for those of us who have already affirmed the usfulness lies in knowing that a model exists that verifies our position. It also accepts that we have moved on from a position of personal tragedy, through a challenging set of societal demands to a position where we have arrived safely within a situation of having positions and roles. Whilst we live in days where our rights and expectations are increasingly placed in retrograde positions the wonder, as my friend Rita Ferris Taylor suggested today is in how young disabled people who have not faced the struggle for an inclusive society, who may have a different set of expectations, will know feel about the social model given that we have already put some of them in a position whereby they can already self affirm.

6) Who has a problem under the affirmative model?

It depends on where you are in your life, whether or not you have been able to affirm a role and a position for yourself. If you haven’t then you have a problem. You fall outside of the remit of a welcoming a society that expects you to be here, expects you to participate.

In conclusion I must accept a bias towards this model that is not fully engaging. I am still stuck in my political rut of challenging and forcing change. On Friday I will burn Pudsey Bear. It might just be that I am strung out on that word affirmation. I am excited to think that I may be able to do this one day and realize a new individualized status which is not so self defaming. It gives me hope that one day we will be able to live with ourselves as an inclusive people within a welcoming society and it leads me to accept that for some of us this is already our position. I like to think that this can be true.

Because of my current position, because of my failure to fully understand the model, I would welcome criticism of this

One of the front windows at the Karamel Club, chocolate factory,collage arts

I was given a very strange brief this weekend by Collage Arts to photograph an arts event in Haringey which said, “I am interested in your take of the Open Studios weekend in particular with your Disabilities expert perspective”.

Putting myself in the picture using the windows of the chocolate factory

Several things struck me about this. When I do documentary work or when I have done documentary work I do it as an insider, a part of a movement, one of the people taking direct action. I was now putting myself in a position whereby I was taking photos from the outside in. That’s problematic. I’m not really used to being a stranger in town.

The second thing is I was asked to take a position as a disabilities expert. I guessed I was being asked to filter my expression through my knowledge as a disability equality trainer, as an advocate and as an activist. Again I felt like a stranger in town. I had never had to practically apply what I know in a situation whereby it might not fit.

I did the work though. I did it in 3 stages.

From the outside looking in just as friend Phil Sherman of booster Cushion theatre walks through the door

I had arrived early. Nothing much was happening. I would join a discussion later and slowly start to become a member of the community but for now I was interested in signs. I was interested in abstractions. A glass wall rising in steps reflects the Chocolate Factory – a place of work. I am on the inside of the factory. It has big windows. People are walking past. There is a closed sign facing me. I have a strong sense of dislocation. I am an outsider on the inside shooting out. Is this saying anything about my experience. I have a strong sense of isolation at this time.

Stage 2. I walk around the open studios. Shooting into rooms from passageways, trying to isolate people. As much as I feel isolated myself. there is a loneliness at work within me.

I go to a cafe. two people sit on a sofa, disengaged from me, disengaged from each other. There is a big window behind them. I try to catch one of them on one end of the sofa with the window reaching out to the skies beyond them. I am putting myself and my feelings into others. I am purposefully putting my self into the self of others and it is not a self that exists for them but I am saying that it does. I am creating visions that are not there. these are my interpretations.

I am reminded of nursing homes, institutions, with staff walking through ignoring residents

I go through more corridors. It is a maze. It adds to my sense of dislocation. I enter a room space. It is not a room. It as walls with open doors. An Artist, Heather Joliffe sits painting in the corner, occupying herself with a paintbrush. She is partially hidden by the traffic which passes through. I get a sense of nursing homes. I get a sense that privacy is invaded. dignity is minimised. The passers by are care staff, completely uninterested in the resident artist. I introduce myself and ask Heather if I can photograph her from a distance. Again I am shooting her as an outsider from outside the room, with Heather in the distance. What I am seeing is not real. Well it is but it has a different reality. I am putting my own into it. My documentary work is lacking a truth. I am building a fantasy – giving real life a coating of lies. I do not feel bad doing it. I have a strange brief and I feel very strange indeed.

Graffiti-ed wall

Down another flight of stairs, photographing stairs, shooting things that are not touchable; reachable for some of us. How acute is a gallery in a stairwell for some of the people who I usually work with. I find another window. it goes out onto a roof. The roof is uncared for. A piece of graffiti art dwells on the opposite wall in a state of some undress. I can remember a torso. It may have had a head. The features are not memorable for me but as the reflection of the factory meant a lack of work for disabled people (to me) so this scene spoke up about hidden sexuality. Something that some people think of sometimes and which devotees must consider a lot. I also think on our destitution, our poverty. I am thinking of the times when our politics where sexy and forced a response and I am denying that the need for economic savings, the savagery of cuts, are any real basis to regress the progress we have made as a marginalised set of people.

We are all broken, shattered - What does care have to do with it

I find Claudia Clare. She has used exposed stairs to build an installation. A clay pot is at the top. It is broken.The shattered shards lie scattered down a paper carpet. I talk to her. She says we are all broken sometimes. Maybe the task is not to see us broken but to put ourselves, each other back together. She tells me that she has known times like this. She does not go into detail and I do not pry. She goes up the stairs for me and lets me photograph her reaching out to the broken pieces and pretending to place them where they already lie – broken. She comes back down and tells me how it felt. She talked about care. She talked to me about touching. I said care might mean something else to me. I said the idea of not touching might be a lot more important at times. I photograph the do not touch sign which has been placed to protect both the work and the public who might cut themselves on the damaged good. The ethos of care homes, institutions, abusive relationships are singing out to me. I have just noticed that if i type to me and miss out the space it turns into a tome and I am conscious of how much I am writing.

I am reminded in my notes about another sign that appeared on the wall of reflected glass. The most significant word was security. I remember this now and i remember putting into the photograph on purpose. There is a link between the rising, stepped windows and security. Access is security. I had thought that access was liberation but the angle of security that other disabled people have spoken about in terms of health and safety resonates now.

Staff at the Karamel Club

I repair to the Karamel club for lunch. I am treated like a lord by this organisation who finds it very difficult to let me pay for anything. Yet I do not feel patronised. I feel loved.

Sue Thompson's Bosch based Riotous Portraits

My third wander led me into situations where I talked more than photographed. I come across Sue Thompson A segment of her wall space holds portraits painted in the style of Bosch (if memory serves) but the concept holds the faces of rioters lifted from CCTV. Sue feels close to her community, The people of Haringey. She swims in the local baths, walks down Tottenham’s streets. She felt appalled by the coverage given to the people who rioted. She has an empathy for them. She talks about fractured society. She looks forward to change. I take her picture with her work. I challenge her as an artist to consider how she would like to have herself represented. Representation is a challenge for me. I do it from time to time as an advocate. My day job. All I ever aspire to is to get as close as I can to what people want me to say bearing in mind my own language. This sets the tone for my next few adventures.

Vaughan Melzer's Dockers

Vaughan Melzer has recently documented the Glasgow Dockers who sat in the shipyard all those years ago (1971-72), as an organised work in, controlling what came in and what went out. It was another form of occupation. These are new days of occupation. The workers I would guess are retired now. They look relaxed, strong, at ease with themselves, their stories and their photographer. We talk about hidden stories, lost languages. The things we used to say to promote our causes, the tales we need to tell that are now longer told in mainstream media. The dockers are faced by another documentary covering a visit to Uganda. I note a piece of paper on Sue’s work surface saying
Gifts to Africa. We talk about charity. I am opposed to it and look forward to this weeks Burn Pudsey Friday event. Vaughan’s portraits do not show that we should pity people, do not show that we should fear people, or reflect grateful minions of an underclass begging for scraps from the landowner or their servile, saville celebs but the paper disturbs me and says that I might fall out with Vaughan on a number of issues. We discuss this and we won’t.

I make one more call on an artist. Oil Painter Tim Benson whose work shows older people. I won’t spend much time on this but again it scorches my bones to see the under represented being given voice in art and it excites me to think that I may now have reached an age whereby I can join another community.

Representing the old with oils, Artist Tim Benson

Each of the artists that I spoke to described their work to me and talked of commitment to community. I look forward to finding a way to work with them.

Mien hostess with the mostest - Rosaly Funari

My second film was not empty. Rosaly Funari, project leader of the Karamel club asks me to photograph her beautiful staff. Later she tells me that she is keen to make sure that the accessible toilet is fit for purpose. She assumes that it may not be. So, if there are any access surveyors in Haringey Rosaly would be pleased to hear from you and take your advice. Karamel’s Comedy Club, Music Night and Restaurant deserves our patronage. We will make it accessible to all. You can find out more about it here http://www.karamelclub.com/

Revolution because day 1 focuses on the profound liberation theories developed by the disability movement during the 80′s and 90′s.

Evolution on day 2 because the theories found their way into law. Nick Clarke will demonstrate the usefulness of different laws including the Equalities Act and aspects of Social Care

Life finally on day 3 because we are left in a confusing time where we are developing independent lives whilst still being held back and told what we can and can’t do. Day 3 is a co-production with Kenny Vesterfelt who tells is advocacy stories of struggle and survival whilst I highlight issues for advocates and those who feel they have an advocacy role

This reminded me of the first thing I heard in advocacy about the unhelpful things that they say and this was 20 years ago. So, you see, we are not moving on that quickly are we.

Way back then, a resident of a John Grooms Home was keen to promote her independence. She had made moves to achieve this. One day she said: “I would like help to put my socks on”. The institutionalised response was; “If you cannot put your socks on you cannot be independent”. Our hero replied; “It would take a personal assistant two minutes to put my socks on. It takes me three hours”. Sadly the link between independence, everyone’s interdependence and the ongoing need for support remains larglely misunderstood and under resourced.

The two recent examples both came from mental health service users. In the first instance a service user asked a social worker to write a letter for him. The social worker said; “Write your own letter. It’s empowering”. Again empowerment depends on appropriate support, useful resources, and a willingness on our parts to take responsibility for ourselves and what we want. The latter part of this equation was in place. Support and resources were not. This little snippet also puts me in mind of the Blairite dictum that I hear more and more. “You have your rights. its time for you to be responsible”. Nope. If you have spent your life in a constant state of disempowerment, if you have not been included and allowed to practice skills, if you do not have the confidence to do for yourself then rights will remain denied.

My third story conerns a response to a malicious complaint. The complained about party contacted the complaints handler to say that he was happy to participate in process but this was very stressful for him. The handler said; “If you have not done anything wrong then you have nothing to be stressed about”. This often cited phrase is considered to be unhelpful at the least and incredibly stupid at most. However, for the person who was being complained about it was heard as “If you are guilty, then you will be stressed”. This made him withdraw from the complaint until he was given unconditional guarantees that he would be given a fair hearing. For me it’s about a lack of care and understanding and it is at this stage that the social model of disability demands that we all check our responses as they reveal our attitudes and the attitudes of the organisations that we work for.

One that is currently puzzling me. I have no idea what this one means. A carer came into the office asking for help and criticising what was happening to their disabled brethren because “she isn’t a viable person”. Any suggestions would be much appreciated.