Wednesday, 28 October 2009

Wednesday 28th October

The Discovery Programme is now underway. This is Headway East London's new occupational programme, which I am running. Many of the projects involved are infulenced by things I saw on the Churchill Fellowship, some are directly drawn from the people and ideas I encountered there. You can read about it here.


Monday, 13 July 2009

Thursday 1st October
I have to prepare a report for the Winston Churchill Memorial Trust, who funded my trip. I have six months to do this, but hopefully it will be done a little while before Christmas. I will post the report here, of course, but in lieu of this, and by way of some kind of closure, I will make a summary attempt:

WHAT I LEARNED

1) As proposed in my Starting Assumptions at the beginning of this blog, there remains no cure for brain injury. In Columbus, Ohio, I learned that progress is being made with Deep Brain Stimulation. According to John Corrigan, this technique is now represents a realistic prospect for lessening the impact of some symptoms of frontal brain injury (principally those fluctuations in neurological activity that interfere with decision-making, planning, and impulse control). It is unclear how extensive or widely-applicable this treatment will be, or how expensive. Perhaps in some cases, where injury/impairment is isolated to certain areas, this could come to constitute a ‘cure’ of a kind. This remains to be seen.

2)
Though none of the programmes or professionals I visited claimed to be able to 'cure' brain injury, some of them openly offered 'treatment'. Others, by virtue of being based in hospitals and being run by 'clinicians', implied that treatment was possible. 'Treatment', I think it’s uncontroversial to say, suggests a process of curing disease. This makes the use of this term in context of brain injury seem controversial. At least to me. I saw nothing in those programmes that offered it that could be distinguished from adult education. Indeed, the 'treatment' programmes sometimes used the terminology of education (referring to 'trainees' rather than patients, for example, and to 'coaches' rather than 'therapists' or ‘doctors’). The difference between 'education' and 'treatment' is open to interpretation. Perhaps if something happens in a hospital or a clinic, that alone makes it 'treatment'. My only concern is that programmes should not make themselves vulnerable to accusations of false advertising, that honesty about what is achievable, and about the mechanisms involved in 'rehabilitation', is important. Is it helpful to re-brand 'teaching' as 'treatment'? Does it change the way people react? Does it make life easier for the 'teacher'? Pupils, after all, have a reputation for asking difficult questions. And teachers are not commonly treated with quite the same deference afforded to doctors.

3) The help being offered to people with brain injuries is strongly influenced by the intentions and assumptions (or beliefs) of the people offering it. If you visit a lawyer, they will tell you about the law. If you visit a plumber, they will tell you about pipes. The people offering help for brain injury, and their accompanying beliefs, can be broadly divided into two groups:
The first group is that of clinical professionals - people who have spent time and money training in one or other therapeutic or academic discipline, learning about and developing theories that explain recovery and illuminate treatment. These are people who have been trained to look for and understand impairments and to find ways to alleviate them - to correct what has gone wrong. This is what being a clinician means, after all: someone who finds and cures illnesses. If this is your training, you are not likely to reject, in principle, the idea of treatment for the given kind of illness you have decided to work with. Even if it proves that 'treatment' is not a realistic prospect at the present time, clinicians aren't going to give up trying. Their job is to deliver existing treatments and find them where none exist. This means that, on a historical time frame, clinicians may end up putting a lot of time and effort into things that either don't work or don't work very well - because it's all they have to offer. This can be seen throughout medical history and ongoingly in many areas of treatment today (think of treatments for HIV/AIDS, think of antibiotics and antiseptics, think of psychopharmacology). Clinicians are continually offering sub-optimal treatments while better ones are in development. In brain injury, the situation is exaggerated by the fact that neuroscience and the other research areas that would provide answers, are in their infancy.
The second group is comprised, broadly, of those that have not trained in clinical disciplines (friends, family members and other advocates, CEOs and employees of non-profit/community/private organisations). These people are not beholden to the medical agenda, are under no pressure to provide treatment and are thereby likely to approach the problem from any number of fairly random positions, informed by whatever learning, prejudices or assumptions with which they come equipped. In fact the only thing these people are not likley to offer is treatment, understanding that this is the territory of the clinicians (the exception here is, of course, the 'quack' who offers treatment for something without training or qualifications). Without the need to treat, the non-clinical group are free to provide help in a greater variety of forms: advice, 'care', advocacy, information, encouragement, training, support in developing social networks... Whether these forms of help are at all useful to the people they are aimed at is another question.
In a sense it doesn't matter which camp a person or institution belongs to. Some people have vested interests in treatment, some don't. But in either case, my feeling is that strong preconceptions about what is helpful will influence the outcome, and that in some cases this can be to the detriment, rather the benefit of the programme and its participants. The people involved in the brain injury Clubhouses have a strong belief that the Clubhouse model is the right thing to aim for in helping people with brain injuries. The people at the NYU Day Programme have a strong belief in providing a highly academic, inflexible training course focussed on awareness of impairments and learning of compensatory strategies. In both cases there appeared to be costs incurred by these strong beliefs. In the case of the Clubhouses I got the impression that sometimes the task of getting the model to look right got in the way of doing new or more relevant things, that pressure to be authentic to a model developed elsewhere with different people was a distraction from responding to what was happening here and now. Equally, the strong belief at NYU in a set of highly specialised, highly taxing 'treatment' processes meant that the programme has ended up excluding a huge percentage of the population it aims to help.
I felt that the best places I saw in the US were those that had not started with any strong beliefs about what constituted help: those that had instead started out (and continued) with the intention of letting the client group define, as far as possible, the provisions offered; those that had been open to diverse influences and had taken a responsive, context-sensitive, person-centred and dynamic approach to service provision. I would say that the programme at Ohio State University and the Fountain House were two good examples of this. They were entirely different programmes with entirely different structures, but both of them were highly relevant. And both of them appeared to have achieved this relevance through a process of some kind of ongoing consultation: by carefully looking at and having dialogue with the client group they have set out to help. First and foremost, the programme at OSU is a drug and alcohol service. This came out of the observation, based on the massive TBI Model Systems data set, that people with brain injuries very commonly have pre-existing drug/alcohol problems and are at increased risk of either perpetuating these dependencies after injury or developing them if they didn't already have them. It focuses on tackling these issues in a manageable fashion and on plugging people with brain injuries into relevant education and employment services in the community. The team place an emphasis on adapting existing approaches to make them useful for people with cognitive impairments. This is a deeply pragmatic approach. Crucially, also, though the programme is based at a hospital, it is not governed or restricted by this setting – its staff are not clinicians and its methods are not those of the clinic. The programme is run according to what works for the client group. Fountain House began decades ago, growing directly out of the peer-support activity of a small group of clients themselves. But client-led beginnings are no guarantee of the kind of sustained growth and long-term success shown at Fountain House. The genius of this extraordinary place has been in maintaining a responsive, clear-sighted practice, in which the strengths of the client group are capitalised upon and where the dialogue that governs its direction is continual. I gained the impression that Fountain House is still a developing organisation - something living and changing as its population shifts and grows.
In a sense this is merely good business. There is not much here that you would not hear from a management consultant or a book on succeeding in commerce. Be responsive to your client group. Be willing to change. Facilitate clear and open dialogue. If something doesn't work, stop doing it. Keep asking questions. Be diverse. None of this new. There is no reason not to apply it in the context of rehabilitation.

4) People with difficulties have something to offer, even if it is only their difficulty itself. Edgar Cahn talks fascinatingly about the problems caused by a scarcity-obsessed economic system, wherein things are only valuable if they are rare. He is quite right that our societies need to revalue the skills that are common (hence Timebanks), but for the people I work with, the scarcity model can actually be of some benefit. If one applies free-market thinking to the value of problems, then people with brain injuries become the owners of a valuable resource: idiosyncratic difficulties that nobody else has. And in a free market, if something is scarce it is also valuable. By this token, people with brain injuries are a gold mine of unusual and complex challenges - the kinds of problems that are crying out for solutions. This is where designers and other problem-solvers come in: those people who make a living out of finding new solutions to other people's difficulties. Rather than trying to eliminate problems, designers view them as opportunities to innovate, to create new and beneficial spaces, objects and situations. (It would be interesting to discuss the relation between design-based and treatment-based solutions: what is the difference between a 'cure' and an 'innovation'? Some technologies are surely both.) For me this is certainly one of the most exciting prospects to come out of my trip to America. During my last week in New York I met with Rosten Woo, Executive Director of the Centre for Urban Pedagogy, a non-profit that develops projects bringing artists and designers together with community advocates. You can see examples of their work here. Rosten seemed convinced that a project of this sort could work back at Headway in London. I hope in the coming months to initiate a few projects based on this idea. I would like to try to get people from (for example) the Royal College of Art together with people from Headway and see what happens. The brief would be as follows: create something (anything) that solves a problem for a person (or people) with a brain injury and that has added value for the wider population. I would want people with injuries to work closely with the designers/artists/engineers so that the outcome was truly a collaboration. This idea is based partly on the assertion that:

5)
People do not 'have' disabilities, they are disabled - in part by their impairments, in part by their environments: by the social and physical infrastructure of the places where they life. The reality of whether a given society (London, for example) is accessible to a person with brain injury depends on how much of a priority accessibility is to that society - how much effort is made to make the environment accessible. Accessibility affects everyone. Public transport in London could be a lot worse, but in some respects it is nevertheless pretty unpleasant. In Washington DC I was surprised to find the Metro system clean, quiet, cool and calmly lit. By comparison, London's Tube is massively overcrowded, too hot, filthy and horribly noisy. The New York City Subway system, I learned, is even worse. Both London and New York's bus systems are physically quite demanding and, again, noisy and overcrowded. Why is it that we tolerate transport systems that make our lives more stressful and exhausting than they need to be? If we were to set the standards of accessibility somewhat higher, not only would people with impairments benefit, so would everybody else. We are all physically and mentally limited. We use innovation to make us better able. We can make decisions about how we apply that innovation.

6)
Solutions created for people with impairments have knock-on benefits for others. I feel like cognitive impairment could be particularly fertile ground for discovering shared benefits. After all, we all forget things, we all suffer fatigue, and we all get confused or lost now and then. The human nervous system is vulnerable to all kinds of slip-ups and innovations that help people with more profound cognitive problems couldn't fail to have added value for the wider population. There might also turn out to be some very exciting, radical results. Imagine a city that was fully accessible to people with brain injury. It's hard to picture. It might look very different. But that would be the whole point.

7) People with ABI have a problem that is also common to those with mental illness and learning disability - the fact that the institutions and procedures that are supposed to deliver equality of opportunity and representation are themselves inaccessible. The political and legal systems in Britain and America (and quite probably everywhere else) are designed by and for those with intact nervous systems, those who do not hallucinate, those with above average IQs. This is the infrastructure not of democracy, but of meritocracy: a community in which those that succeed are the bright, the talented, the wise, the capable. The concept of meritocracy can seem appealing in comparison with aristocracy (the ancient and still influential European system where people inherit power and wealth rather than earning it), and many people tacitly assume it is the morally correct system. It’s certainly the principle on which the American Dream is based (that anyone, with effort, can rise above their origins, however lowly). But it leads to a situation almost as unfair as aristocracy – where people are excluded or kept in poverty merely because they are less able (for more on this see Michael Young’s book The Rise of the Meritocracy and surrounding debate). This is exactly what people with disabilities face in Britain. During my tour in America, I had a number of conversations about Civil Rights. I spoke to several academics from Universities in California and Ohio, including Mark Sherry, a lecturer in Sociology at the University of Toledo. Mark had a brain injury a number of years ago and much of his work has centred on the study of how brain injury and disability are understood and explained. In our conversation, Mark was quite clear that the disability rights movements in America have so far advocated almost entirely for people with physical and sensory impairments rather than anything else (see also Mark’s book, If Only I Had a Brain). The simple fact is that people with psychological and cognitive problems are less able to advocate for themselves than other excluded groups. And this is made worse by the high demands required to make use of the legal and political systems in place. If I want to lobby a politician for better representation of people with brain injury, my message is unlikely to be effective unless it is well organised and clearly articulated. If I want to take an employer or a borough council to court for discrimination, I’m going to have to do this through the courts and, again, to do this I need to be pretty organised. My point is not that nobody with a brain injury, learning disability or a psychiatric diagnosis is capable of pursuing successful litigation or lobbying – just that not enough of them are, given the systems that are presently available. The way Fountain House and other psychiatric Clubhouses get around this in their day-to-day operations is, I believe, through collective action – by capitalising on the fact that their population has a fluctuating cognitive capacity. The enduring mental health problems that Fountain House deal with (schizophrenia, psychosis, ‘major’ depression and bi-polar - or ‘manic depressive’ - disorder) tend to be intermittent or cyclical, with most people experiencing periods of reduced cognitive capacity, and other periods of good function. What Fountain House can rely on, I would suggest, is that their members aren’t all in a ‘down’ period at the same time – that while Fred is down, Jenny is up, and while Jenny is down Steve is up. This means that, at any given time, a large enough proportion of the membership of the Clubhouse will be in condition to make sure things are running smoothly. So the Clubhouse can operate successfully. But it seems even this innovation isn’t adequate to the task addressing the wider problem of civil rights for people with mental health problems. They remain uniformly stigmatised and excluded. And the case is that much worse for people with learning disabilities and more severe, stable cognitive impairments after brain injury: for these people the legal and political systems may as well not exist. They rely utterly on the advocacy 0f others at this level (either family members or professionals or peers with less significant impairments). At Mt Sinai, Joshua Cantor proposed that people with brain injuries and mental health problems might simply not want to be recognised – that the reason they aren’t represented politically is because they don’t want to be. I don’t buy this (and I don’t think Joshua did either). It isn’t in keeping with my experience (or his, I suspect). At Fountain House I asked Alan Doyle whether these separate groups might at some point have to come to each other’s aid, whether the solution to the problem of effective advocacy might be to extend the principle of collectivism further. He didn’t have an answer. My idea is this: people with psychiatric problems, people with brain injuries and people with learning disabilities should get together. So far they have organised themselves (or been organised) into separate groups that advocate (with limited success) for their own special interests. But what I am saying is that their interests are not actually very ‘special’ in this sense – that their interests are shared. By organising TOGETHER, rather than separately, the voice of this larger group would, inevitably, be that much louder and their common interests might be better recognised.

8)
The interests of people with impairments are mostly the same as those ‘without’ impairments. Many of the organisations I visited in the US emphasised the special, distinctive needs of their client group. All of them were exclusive services (e.g. for people brain injury, mental health problems, learning disability). But if this approach remains intact, the ultimate consequence is to cement false concepts. The idea that people with impairments are somehow categorically different (and that they therefore have some alien set of needs and aspirations) is a fiction. Equally, the concept of ‘independence’ among the ‘normal’ population is also a fiction. ‘Impairment,’ ‘dependency,’ ‘independence,’ ‘ability’ and ‘disability’ are all relative terms, concepts on a continuum. In the West we are obsessed with individual heroism – our idols are lonely figures who strive and win out against the odds. We cling also to the paranoid Cold War dictum of John Nash’s Game Theory of Economics, that humans operate on the basis of rational self interest.

The truth is otherwise: none of us can function without the support of others. We are all more or less decrepit, dependent, needy, fallible. Our decisions are more often than not irrational (if they weren’t credit card companies would make no money) and we are as capable of altruism as we are of selfishness. We make choices and choices have consequences. There is an apocryphal piece of wisdom (attributed to Ghandi among others), to the effect that a society can be judged by the way it treats its most vulnerable members. But the case is surely much more urgent than that: the wellbeing of all individuals in a society is interconnected. We share a common destiny. By letting any of our number suffer unduly, we store up tragedy for all. By excluding so many people from our economies, by fixing great tracts of the population in non-contributing roles (the elderly, the impaired, the mad, the sick, the slow, the confused, the addicted, the unhappy), we condemn them to this suffering and condemn ourselves to carrying them as burden. This is an arrangement we have perpetuated for too long and one that must, if only through economic necessity, die out.

Tuesday, 7 July 2009

Tuesday 7th July


I am glad to be home. Looking at the Undertakings I set out before I left, I make a list of things I did and didn't achieve.
THINGS I DID DO
1) I made a tour of brain injury reahbilitation programmes in the United States of America! I visited Clubhouses in Virginia. I visited Edgar Cahn in Washington DC. I visited John Corrigan and the TBI Network in Ohio. I visited the Brain Injury Day Programme at NYU in New York. In addition, I visited Fountain House, the original mental health Clubhouse and the TBI Program at Mout Sinai Hospital, both in New York City. I also met with people from design professions in both Virinia and New York, and developed an understanding of how design and innovation might have a part to play in acheiving Headway East London's mission of supporting people with brain injury and changing society's attitudes towards disability.
2) I learned from these programmes! I learned about their principles and intentions, their financing and their origins and development. I learned about what they do and how well they do it.
3) I asked the participants what was important to them. I talked to many people and learned about what worked and what didn't, about what made a difference and why they were involved in the first place.
4) I learned that there are indeed some common themes and principles involved in many programmes, but that these prinicples can be divided quite plainly based on the intentions of the programme (more on this later).

THINGS I DIDN'T DO
1) I didn't visit Florida or Albany or Chicago. The program in Florida collapsed and Larry, the director, moved to California. Chicago proved to be a stretch too far. Albany was impossible for other reasons.
2) I didn't develop a clear protocol for gathering data about the programs. I'd had the idea that I could interview participants and staff and draw information from these interviews about what really mattered to people after brain injury. This was overly ambitious.
3) I didn't get as far as California, to learn about disability rights movements. This idea came up during the trip, but, again, proved impractical.

Tuesday, 23 June 2009

Saturday 20th June
video
Friday 19th June




Thursday 18th June
Wednesday 17th June

Monday, 22 June 2009

Tuesday 16th June.
Mount Sinai Hospital is located right on Central Park, on the Upper East Side, an attractive part of the city. But the Brain Injury Research Centre operates out of the hospital's basement and, as I exit the lift I see immediately that it suffers from the same problems as the Day Program at Rusk - daylight is sparse here too. The lead researchers, Joshua and Theresa, each have a window in their office, as does the main group room, which also serves as meeting room. But the principle spaces are institutional, clinical, impersonal, and lit with those same white fluorescent squares. There are vending machines in the corridor and a store room at the end where all the food and drinks are kept in big boxes.




Theresa and Joshua are very welcoming. I sit in on the morning meeting and introduce myself to the team which is comprised of research psychologists at various levels of qualification from undergraduate to post doctoral. I gather that, like at Rusk, there is a small team of paid staff plus a number of interns and volunteers. Kirsten, a Post-doctoral Fellow, chairs the meeting, talking the team through a research proposal they are hoping to gain funding for: a project to investigate the accessibility and effectiveness of a new piece of computer software called InsightTM designed to improve processing speed and a number of other cognitive domains. She explains the promising results the software has had with other clinical and non-clinical client groups, how they are hoping it might be a good recommendation for inpatient brain injury rehab. She describes a pilot study she and some of the other team members attempted during the preceding months. They had planned to enroll ten participants from the inpatient unit at the hospital but, it seems, had had some difficulties. Of those people available on the unit at the time, two were non-English speakers, one was a minor (too young), one refused, one repeatedly postponed consent and one had Alzheimer's disease. They excluded ten more patients becuase they were too impaired or disoriented to be able to use the software or because they had psychiatric diagnoses that would have confounded the results. They ended up with two participants for the pilot. Of those two, one was discharged before the study could be completed.

I sit in on a one-to-one cognitive session with Kirsten and one of the program's participants, T. T is perhaps thirty-five. She concentrates hard, closing her eyes as Kirstin plays an audio file from her laptop of a voice saying numbers in monotone. 9, 5, 1, 6, 3, 2, 6... T has to click a button on a counter whenever she hears the voice say the number two. This goes on for about two minutes. Kirsten gives a score at the end. They go through a number of variations on this task - the voice says the numbers more quickly, T has to click the button whenever the number is one lower than the last one, instead of being a two; The task is the same but there is distracting noise from a TV in the background of the audio file; T has to click the button when she hears a two but now she has to check off numbers on a sheet of paper at the same time. This happens in a little grey room with no windows. Kirsten seems like a nice person. She is encouraging towards T, and seems to enjoy the work. She reassures T if she makes a mistake. It seems T's score is around average for most of the tasks (average, I assume, for the non-injured population). T nods, looking uncertain if this is OK. Kirsten says there's nothing wrong with average, but because T would have been above average before her injury, that's what they're aiming for here. After the session is over I talk to T a bit. I say those tasks seem horrendous - really difficult to concentrate on. I say if her score was average I am confident I would get below average. I ask her what it is these sessions are doing for her. She says they're helping her get better at organising her thoughts. She says she's really slow since her injury. She says she used to be smart, she never had to rely on any strategies of any kind, she could just hold everything in her head. She says she's also learning more about her impairments. 'Up until recently, when I had them tested, I had no idea my eyes weren't even working together. I have visutal processing problems.' She puts on a pair of sunglasses. 'I have a problem with the light.' I ask how she got her injury. She says she had a mountain-biking accident about six years ago where she biked off a ridge. I say that sounds horrible, was she hospitalised? No, she says but there was something more recent - about a year ago she opened a metal drawer into her head. 'So,' I say 'where I'm working we talk about post-concussion symptoms. Is that what you're experiencing?' 'Yes, really bad post-concussion symptoms.'

I follow T to the group session that's coming next - Critical Thinking. There are three people in this group, T and two other women. I introduce myself. One of the women is around the same age as T. She says 'What is your purpose here?' I say that I'm visiting to see how things are done in the US. The third lady is a bit older and has a hearing aid. Kirsten leads the group through what reminds me of the comprehension tasks I did at school: they have been reading a letter to an Agony Aunt and their task is to brain storm responses to the letter, trying to see all the angles, consider all the subtleties contained in the scenario. The letter's author is an anonymous female, 'Embarrassed in Ohio'. She explains that she is ashamed by her cars and her family home, that she feels inferior to the neighbours, who have better cars and houses. She says she knows this is wrong of her and she is worried that the situation is upsetting her daughter. Her husband is also threatening to leave. The women seem to enjoy the task, talking at length about what might be going on between the lines, about why the woman might feel this way and what it is she's really asking for in the letter. At one point T makes a joke about how ironic it is that this poor woman has this dilemma and the best people she can find to get advice from are three people with brain injuries. Kirsten says maybe so, but actually they often find that the groups here do a better job than the Agony Aunt - perhaps becuase they spend so much time looking into the alternatives.

After this session there is a break. In the break T receives a phone call. I overhear her saying 'I understand that but it's a little difficult for me because I have a brain injury.' I can't tell who she's talking to. She is still wearing her sunglasses. I walk with Kirsten to the staff room to get some water. She says 'What do you think?' I say mumble an answer, something like 'I don't know what I think, there's too much I haven't seen.'

Before the next group one of the participants has to leave, so that leaves only two - T and the older woman with the hearing aid. The group leader (one of the other staff, also a nice lady, this time in a green sweater) explains that there's also another perons missing today. Like at Rusk, the staff and visitors now outnumber the participants. In this group the members do something called SWAPS - an acronym for a problem-solving approach. I don't get the meaning of the acronym down. The leader asks who has had a 'stop point' they would like to share. A stop point is a time where someone runs into a problem they can't solve. Nobody speaks for a moment. Then T says she has one. The other night she went to stay with a friend. She was going to bed when she found out the friend had no mint tea. She always has mint tea before she goes to bed. The friend had other kinds of tea but no mint. She spent a while looking and trying to figure out if she could get hold of some mint tea. Then she started blaming herself for not having brought some with her. Then eventually she decided she could do without it and went to bed. The leader says 'Good, so you got through that one pretty well.' The group needs something a bit more concrete to work on and, again, the older lady doesn't offer anything up so T steps forward. She says she wants to get her friends to help her organise her paper work. She has a ton of paper work that's totally disorganised and some of it is legal and she really needs to get it sorted out but she doesn't know how to ask her friends. The staff member starts making bullet points on the white board as T goes into greater detail. T lists eleven subcomponents of her problem and eight alternative interpretations she has already thought of. I leave the group about fifteen minutes before the end and sit in the corridor, next to the vending machines. At one point one of the staff, a nice lady in a read sweater, walks past and says 'Are you learning a lot?'

Just after 1pm Joshua appears and takes me across the road to a sandwich shop. He says I should go to a different group this afternoon, but I'll have to hurry becuase it starts in five minutes. I ask him if perhaps instead he would have time to talk to me? Perhaps we could just sit and eat and he could tell me about the program?

We sit in Josh's office and eat our salads. I ask him a number of very blunt questions, some of them bordering on lunacy. I ask him where all the people with brain injury in New York are. 'Where are they?' I say to him, in effect, that the research project described by Kirsten at the morning meeting was daft. I suggest that a computer game for people with brain injury makes no sense. I say that the problem with the idea is made obvious by the fact that they had such difficulty recruiting subjects. I say that I don't think cognitive rehab is a 'growth area'. I feel sweaty. I feel harrassed. I feel like I have drunk too much coffee, although I know I haven't had any. Joshua takes me to the inpatient unit where people are in bed or being assisted to sit up. He shows me the physical therapy room and introduces me to the ward consultant. I continue my hysteria. I say to him, waving my hands around, 'Does it make sense? This whole hospital thing?'


On reflection later, back at my apartment, I realise that I have had enough. I have reached the limit of my ability to pursue usefully the visits arranged for this trip. My plan had always been to act as an impartial, ignorant observer, to behave in a manner that allowed my hosts to feel they could be open about their work. If possible I had hoped to make friends. I had at very least intended to remain diplomatic. I am, I realise, no longer able to do this. I have reached saturation point.

Amazingly, depite my overload, Joshua remains gracious throughout our discussions. He has the presence of mind and the good spirit, perhaps, to treat me kindly and make the best of it. During our conversation I try to explain to him the socio-political angle I have been working on: the idea that in fact cognitive diability is not a matter for treatment so much as one for social justice. We are always going to have people with learning disability, with mental health problems and, quite likely, brain injury. At some point we are going to have to confront the same issues of exclusion and discrimination as have been (and are being) addressed by other minority groups. He shows me something on the internet: a site belonging to a California based bakery called Psycho Donuts that, as the name suggests, sells 'novelty' donuts around a 'zany' theme. This is the 'Massive Head Trauma' donut:

The jam splurges out like blood and brains. Ho ho. They also have donuts called 'Bipolar' and 'Manic Malt'. They have a tiny little joke padded cell in the shop. The website says they have 'taken the neighborhood donut and put it on medication, and given it shock treatment'. Turning back to me Joshua explains that the company has been the subject of some controversy. 'The question is,' he says 'why is it still OK to satyrise mental illness like this? You wouldn't buy a donut called a 'nigger' donut, or a 'faggot' donut. You might have once upon a time, but there's no way that would happen now. So why are these acceptable?'
He doesn't offer an answer. In fact he proposes that there might be something inherent about mental illness and cognitive disorder that keeps people from organising politically. 'Can you imagine people standing up publicly and saying "I'm Schizophrenic"? Would that ever happen?' His suggestion seems to be that people may never feel comfortable enough with their conditions to be open about them, to view them as something to be proud of or assertive about. I don't know if he really believes this. I assume he must have thought about it. But perhaps he is merely playing devils advocate. I tell him about the Hearing Voices Network in Europe and about its Chair in the UK, Jacqui Dillon, who I saw speak at a conference last year. Someone with a diagnosis herself, Jacqui spoke very openly about her experience of treatment and discrimination and concluded by putting her view of the situation in precise political terms: she said that the effort to gain recognition of the rights of people with mental health problems was 'the last great civil rights movement.'

To me the lot of those with psychiatric diagnoses is common to those with brain injury and learning disability. Though their symptoms and circumstances differ, the nature and origins of their exclusion is identical. There is nothing inherent about these conditions that should make a person ashamed. Just as women eventually gained the vote, just as gay people have succeeded in having laws against them repealed across the US and Europe, people with cognitive impairments and other difficulties have the opportunity now to make a strong case for their inclusion in society. They have the chance to show that they can take up vital and unique rolls, that by being helped to do so they can save public money and help to transform communities. The task, merely, is to show how this is done.
Monday 15th June
Fountain House is a large building on West 47th Street, in the Hell's Kitchen district, West of Midtown. There are five stories. Most of the work spaces are open plan. The top floor is a glass-walled addition with a mezzanine. Parts of it appear like traditional offices, others are more like the receptions spaces of a Victorian town house.




I am shown around by Maria. She has been a member of the Clubhouse for six years. She's in the First Floor Unit. They deal with admissions and visitors among other things. She tells me there are something over three hundred active members at the moment. All members have diagnosis of either Schizophrenia, Bi-Polar Disorder or Depression. I see the Research Unit, where they are collecting data on attendance and outcomes, and where they also organise weekend activities like the film club and outings. I see the Clerical Unit where much of the administration is taken care of and the newsletters are produced, and the Kitchen Unit (an enormous catering facility in the basement with a dining area that can seat nearly 200). I see the Education Unit where photo cards on the wall show the twenty or thirty members who are, with the help of Fountain House, currently in full or part time education. I learn about the supported work system they run here, where placements are found in willing companies and cover is provided by staff and other members (if anyone has a bad day, someone will always be there to do their job - this is the clever insurance policy Fountain House have designed to make the placements realistic for employers). After giving me the tour she has to go back to the office and make some calls to members who haven't been seen in a while. I am offered a follow-up meeting with Alan Doyle, Director of Education and Training. He deals with the developing Clubhouses, helping people set them up and learn about the principles involved.

We talk a little bit about the brain injury Clubhouses I've seen in Virginia. Alan says he doesn't know much about them. He says I should have visited the one in Ontario. I ask why. He says it's the only one that's based on the authentic principles of the Clubhouse movement. 'Is authenticity important?' I ask. Alan pauses. He replies with a question: 'When you came in here what was it that struck you about the place?' It's a confident question. But perhaps he already has the sense that I understand something about what they are doing. I tell him I could imagine working at Fountain House. I say I believe you can tell a great deal about an organisation by its premises and by how things are arranged. I say I like the natural light and the views from the top floor, I like the open doors, I like the furniture and the freedom of movement. I like the patios with the flowers and plants. I like the paintings on the walls. I say the place has character. It seems like a place where people are making an effort, where people care about the building and the spaces inside. I say it's an environment where I imagine people can enjoy their work and feel healthy. I say if an organisation is trying to help people who are already distressed, it needs to be a place where everyone, including the staff, can feel relaxed and positive, where people will want to spend time.

Alan nods. 'It's not like that by accident,' he says.
But the Fountain House is familiar to me. I feel at home here. The atmosphere, the way people relate to one another, reminds me strongly of where I work. And I don't work in a Clubhouse.

As though to illustrate the point, a man walks into the office talking fast, a garbled stream I find hard to understand. He walks right through the open door and up to Alan who smiles somewhat warily, raising his hands behind his head. I get the impression this is a regular occurrence. But Alan is patient and treats the man with respect. He says 'Yes, I know. I'm busy just now.' I detect something beneath the interaction: that on some level Alan likes this man, despite his interruption, despite all the times this has happened before, despite the fact that what he is saying is right out of context, or that no matter what Alan says to him they will have the same conversation again next week or tomorrow or later today - despite all this, Alan has a connection to this strange man. He knows him and values him. The man has facial hair and his clothes seem ill-fitting. He doesn't seem to notice me until Alan points me out. 'This is Ben, he's come to visit from England.' The man turns. His speech slows to a halt and he takes me in. He shakes my hand and introduces himself. He seems like a decent guy. During our meeting we are interrupted twice more - once by a guy who ducks his head in, apparently merely to introduce himself: 'My name is Steve, who are you?' - and once by a phone call from someone determined to book a place at an event. As Alan puts the phone down I ask if he was the right person for that phone call. He laughs. 'I am as far as he's concerned. He knows I'll make it happen for him.'

Alan gives me the contact details of the Clubhouse in London (the mental health one). He tells me there used to be twenty in Britain, but that all but two have now folded. He doesn't know why. The number of Clubhouses globally hasn't grown in ten years. I ask him if there's something we need to be doing - all of us that work with people with cognitive, psychiatric or learning disabilities. All the people who have trouble advocating for themselves, lobbying. I ask him whether he thinks a time will come when we need to team up? He breaths out slowly and puts a hand to his brow. 'It's a good question. But you know, working here with these guys takes up all of my mind, all of my efforts.'

Down stairs I meet another man who tells me he is the president of the Clubhouse. I ask how many years he's been in the role. He says years. He goes around, he knows everyone, he makes sure things are OK. I ask him if he was elected. He laughs and says 'No! Self appointed!' Outside I bump into Steve again and we talk for a moment about England and music. He likes the Beatles. All except John Lennon. I ask what he has against John Lennon. He says he just prefers George Harrison and Ringo Star.
Sunday 14th June



Saturday 13th June






Friday 12th June