Tuesday, 23 June 2009

Saturday 20th June
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

Saturday, 20 June 2009

Monday 8th June - Thursday 11th June.
The Day Program at the Rusk Institute for Rehabilitation operates out of a group of offices on the third floor of one of the New York University buildings on 1st Avenue. They share the premises with the Institute's department of Vestibular Rehabilitation. The floor plan is a circuit, around which the small and largely windowless offices are arranged. It's that classical office-building problem wherein internal partitioning means blotting out the sun and leaving inhabitants with nothing but the steady glow of tungsten.

In these rooms, the Trainees attend sessions four days per week. The morning is comprised of a group Orientation and another session in which one of them takes the Hot Seat for an exercise with the staff and is then given feedback by each of the other Trainees and whoever else is attending that day (family members, support workers, visiting professionals like myself, former Trainees or 'Peer Counselors' who have come in to help). These two morning sessions run from 10am until midday and take place in the group room in the middle. Lunch lasts an hour, then sessions resume with individual Cognitive classes, in which the Trainees work on their individual goals with a staff member. At the time of my visit there are eight Trainees, seven paid staff, an 'Extern' from the Netherlands and two student volunteers who visit once or twice a week. During the group sessions, with all these third parties sitting in, the Trainees are outnumbered almost two-to-one. My immediate impression is that the sessions are incredibly controlled. There are strict rules of conduct. One staff member chairs each session. If a person (including a staff member) wants to talk, they raise their hand and don't speak until the chair invites them. People dress in business attire (Ellen Zide, the Assistant Director explains to me that my jeans aren't really acceptable, and could I wear shirtsleeves tomorrow? I don't need a tie). I get the sense also that Trainees are not expected to dissent from the recommendations of the staff. On the few occasions where a Trainee expresses doubts about a strategy or some element of the process, the Chair says something akin to 'I hear you...' and then reiterates the rationale for the recommendation in question. The sessions, as far as I can tell, focus almost exclusively on two things: raising the awareness of the Trainees towards their impairments and emphasising the importance of their willing engagement in the program and its attendant theories and activities. In no prior visit (nor in any other situation) have I encountered such persistent and thorough discussion of cognitive impairment, or such ardent insistence on compliance. Over the four days I am present, I hear almost nothing else. Reading the goal posters around the wall I can see that all of them focus directly on one or other of these things: addressing an impairment or improving the Trainee's uptake of staff advice. In many of the rooms an image is repeated, a diagram in pyramid form, on large foam boards and on smaller A4 sheets. This pyramid seems to encapsulate the program quite well.

Trainees must begin at the bottom of this mountain, climbing its slopes as they overcome the various cognitive hurdles to their successful acceptance of and adaptation to their injury and, finally, arrive at some new understanding of their identity. To me it appears an arduous prospect. To me the sessions seem taxing and somewhat depressing. It is certainly not what I'm used to. But no doubt this is all for a reason. There is consensus among the staff and Trainees that this is the method, tried and true. And surely the Program would not have the reputation it does without some justification. There is no doubt that the work being done here meets a high standard of refinement - it is extrememly thorough and appears very sophisticated. Exactly how long the process of climbing the pyramid should take varies, I gather, from one individual to the next. The program is structured in twenty-week cycles, two per year. Some people do two cycles, some to many more. Each cycle a new goal will be set for each Trainee, intended to encapsulates whatever is most pertinent for their rehabilitation. The Trainees occasionally talk about where they are on the pyramid, and the staff allude to their progress 'since last cycle'.

This practice, perhaps unsurprisingly, comes with its own special vocabulary, a number of terms used frequently here that I have not heard elsewhere: 'neurofatigue' (I am unclear what distinguishes this from normal fatigue, apart from severity and frequency, which I understand can often be more pronounced after brain injury); 'discontinuity' (used here to refer to occasions where a person with brain injury experiences gaps in concentration or memory); 'flooding' (the experience of a person with brain injury when they are overwhelmed by emotions or other internal events, stopping them from functioning successfully, typically occurring at times of stress); 'verification' (a strategy emphasised by the program, aimed at helping trainees to maintain focus and check their understanding in conversations, compensating for problems of attention and comprehension); 'stemming' (a means of self-cuing involving the use of sentence 'stems' - beginning fragments that repeat the content of the conversation and lead up to the Trainee's response). I also encounter a number of familiar words that appear to be used here in ways I am not used to. Foremost among these is 'disinhibition'. In my experience at Headway, I have come to understand (and use) this term with reference to a quite profound impairment of self-control, a situation usually arising from injury to the frontal parts of the brain (quite common in trauma) that are responsible (among other things) for directly inhibiting the action of the limbic system, the so-called 'reptile brain' that mediates most of our more powerful urges (anger, sex, fear). When we talk about disinhibition at Headway, it is usually associated with our members who, for example, have threatened or actually attacked people at the centre, who have a groped visitors, who have a history of spontaneously disclosing details of their sex lives to strangers. At Rusk I witness well-dressed Trainees sitting quietly, taking notes, organising their folders, asking relevant, structured, carefully articulated questions about highly abstracted topics (e.g. the nature of self awareness), and apparently maintaining their concentration for up to two hours at a time in a dry, air conditioned room under artificial lights, surrounded only by the grey walls and hand-lettered posters describing their problems. The idea that someone who can do these things could be described as having problems with self control, that this forms part of the pathology complex the program aims to treat for these people is, to me, surprising and slightly baffling. It seems like an over-extension of the clinical terminology. It might be that I am missing something - that these people do, at other times exhibit symptoms of disinhibition that I'm not seeing. During one conversation this is actually mentioned by Pazit, one of the staff. She explains that the disinhibited behaviours generally don't show at the program because it is a safe environment where the Trainees are continually cued, a context in which appropriate behaviour is tacitly but pervasively scaffolded by the setting and the staff. This is believable in principle. It's certainly something we rely on at Headway - the idea that the context helps someone orient themselves to codes of behaviour. But in my experience, disinhibition tends to come in tandem with other functional signifiers - things which, although not always immediately evident, generally become clear after a little conversation. People for whom disinhibition is a serious problem generally say what is on their mind, they generally make social faux pas, they generally don't notice if they've said or done something to offend or confuse another person, they often repeat themselves both verbally and physically, getting stuck in action loops or returning to the same situation or activity when it's no longer relevant or helpful to do so, their personalities are typically said to have changed in ways noticeable to their loved ones. In the four days at Rusk I see very few of these things, very few things that even hint at the problem of disinhibition. Certainly there are times when Trainees lose the thread of the dialogue during groups, or the train of their own thoughts. But not to a degree that I would be able to separate them from the uninjured population (we all, after all, make mistakes).
Perhaps something else is going on. Perhaps the disparity I am seeing is just a question of standards. Perhaps what I am seeing is a program aimed at people who, before injury, were super high-achievers, for whom 'disinhibition' is a relative term, referring to what most people would consider a normal (or minor) degree of impulsivity but which, to them, represents a radical departure from their pre-morbid behaviour. I can imagine that, to a person of great skill and discipline, even a minor behavioural impairment might be catastrophic. (One of the Trainees, C, is said to have previously worked as a lecturer, earning his living by being articulate and quick-witted. He now has some word finding problems and, although he is evidently still a very capable person, he is nevertheless clearly distraught about his future career prospects.) Either way, to me the Trainees appear to be some of the most motivated, self-disciplined people I have ever met. And this gives rise to a key observation about the Day Program, something confirmed by both Trainees and staff: they screen very carefully at the point of intake and reject anyone they don't believe will be able to cope with the process. I don't know how many referrals they get, or how many people they turn down, but it's clear that the client group they are working with represents a tiny minority of the population with brain injury.

During the four days I also gradually gain an insight into the kinds of injury the Trainees have sustained. Of the eight people on the program, I learn about seven injuries: two have had traumatic (impact) injuries, but were conscious at the time of their accidents (were neither knocked out nor rendered comatose); two have had brain tumours surgically removed (and have injuries predominantly induced by this surgery); one sustained vascular injury (from a ruptured aneurysm); one was involved in a car accident, was comatose for two weeks and had a partial left temporal lobectomy; and one was injured in utero, before birth. Of the two Peer Counselors I meet, one was in a motorcycle accident and was comatose for seven days and the other was hit in the head with a school bag and, like the first two trainees, was never unconscious. At Headway, over sixty per cent of our stable membership have sustained traumatic brain injuries (TBI), mostly from road traffic accident and assault, and all but a few of them were comatose for a minimum of 24 hours (many for weeks or months on end). At Rusk, the number with TBI is fifty per cent and of those more than half were never unconscious.

Unconsciousness is not an infallible measure of severity of injury. There are plenty of people who live with some difficult symptoms after only sustaining concussion, for example. But at present the standard measures of brain injury severity are based on depth and length of unconsciousness and on the length and density of something called Post Traumatic Amnesia (PTA) - the period of time during which people form no memories after injury (the gap, that is, in someone's memory after their accident). If someone has sustained brain injury without experiencing either coma or PTA, there is no way of assessing or even describing the severity of the actual injury - all that can be discussed is the severity of the person's subjective symptoms, and the only source of information you have on that is the person themselves. (Neuropsychological tests may give some indication of a person's areas of difficulty but, for the same reason, are vulnerable to inaccuracy: a person's performance is not necessarily or directly related to their injury).

The other half of the Rusk Trainees have sustained vascular or surgical injuries. I don't mean to suggest that these injuries have inevitably less severe effects than traumatic ones, but they do tend to be more isolated in terms of cortical area and tend to lead, correspondingly, to more isolated impairments. Where trauma tends to affect diffuse and multiple functional areas of the brain, vascular and surgical injuries tend to be more circumscribed. There are plenty of people who have very profound difficulties after vascular or surgical injury, but their difficulties tend to be in one or other domain (unless the injury is very large), rather than many. This is a simplification. But taken together, the kinds of injuries sustained by the Trainees at Rusk present a certain sort of picture: of a group of people who, typically, have had less severe, more circumscribed injuries and, in some cases, injuries that are so mild that their severity cannot be reliably empirically assessed with existing technology (nor would they be likely to show up on any scans).

In addition, the academic nature of the program, and its emphasis on awareness of impairments and compliance with staff are reliant on several factors that would exclude further scores of the brain injury population I am familiar with in London:
1) It requires a minimum level of formal, Western, education (literacy, numeracy, study skills)
2) It requires comfort with and willingness to participate in didactic, classroom-type lessons (to be taught, to submit to restrictions around clothing and behaviour, to hand over responsibility and decision-making to an authority figure)
3) It presupposes that the impairments being addressed are predominantly hidden from the view of the individual, rather than plainly obvious (that the key barrier to compensation is inevitably awareness)

The Program may well be extremely effective for those who suit it. It may work, so to speak, for those it works for. But these people are, by dint of the Program's design, very small in number.

On my second day at Rusk I learn another vital piece of information. I am walking with Roberta, a former Trainee and Peer Counselor on the program. She has told me about her experience of injury, the effects of her loss of employment, the difficulty she had in adjusting. Somewhere along the way she mentions the cost of the program. 'Unless it's gone up, then its in the region of $59,000 for a twenty week cycle.' Most people do more than one cycle. One Trainee I have spoken to is on his sixth. I find this news almost impossible to grasp. The fee equates to roughly £36,ooo per place per semester. I can't imagine why it should cost this much. Roberta attended two cycles across one year and paid well over a hundred thousand dollars. Some of this was covered by insurance. A large part of it came out of her life savings. On our walk we bump into Yuki, one of the current trainees. He has come from Japan to take part in the program. He explains that, in order to afford it, he is taking part in fund raising events including running marathons. He has a website.

Roberta explains how hard the program is. She says she had great difficulty in the early stages submitting to the process. She found it hard being told she needed to learn compensatory strategies. She wanted them to fix the problem, not teach her about it. She said she found the program's focus on impairments almost unbearably depressing, especially given her existing desperation. I ask her what made her come around?
'I think once I became more integrated with the other Trainees, when I started realising some of them had worse problems than I did, when I started seeing that I was making some progress...' So a lot of it was about regaining confidence? 'Yes. And seeing that other people were in the same situation.' I ask her if she would spend the money again. She says 'I think so. It didn't give me back my life, but it did give me back myself.' However unpleasant the process, Roberta is convinced of its effectiveness. She seems to accept the cost as a symptom of the wider malaise that defines the American health care system. If you want treatment, you have to pay for it. And no other options exist. But for me, the cost of the program raises a virtually insurmountable criticism: it is available only to those with either supreme health insurance policies or vast amounts of money (which amount in most cases to the same thing). To some degree this explains the demographic they are dealing with at Rusk and the absence of what I consider the core client group: men from lower income families, from lower educational backgrounds, with tendencies towards risk-taking behaviours (driving fast, drugs and alcohol, violence, labouring and other physically dangerous areas of work).

On the last of my four days, I am invited to take the Hot Seat in the group room so that staff and Trainees might have their chance to ask me about my own program and what I have learned at Rusk. I say I have been impressed by the people I have met. I say I have developed an admiration for both the staff and the Trainees. I say I would be proud to work with any one of them. Yehuda, the program Director, interjects. He says 'For a salary of zero dollars, you would be welcome to come and work with us.' I laugh, and then correct him. 'I would be proud to work with the people I have met here, but I wouldn't want to leave my place of work. I like it there.' As far as what I have learned goes, it is difficult to identify what I could take with me. Perhaps a few of the strategies, like verification and stemming? The group ask me questions about Headway. I try to explain how different it all is. I say that the differences start with our intake policies. I say we don't take people under eighteen, or people with progressive conditions, but otherwise we don't really turn anyone away. We have no functional criteria. I try to explain the roles of the volunteers. I talk about the diverse range of services we offer, the way we work with our members so that they can gradually take on responsibility for running parts of the project. The group seem baffled. Yehuda intervenes a number of times, trying to clarify. I don't know how successful I am. I feel like I'm trying to describe air to a group of fish.

The truth is this: however well the program here works for those who can afford it, for those that can cope with it, I fear that it will always operate in a niche. And if we at Headway are to succeed in our mission to help people with brain injury, those tens of thousands of people across London, most of whom would simply never get near a program like Rusk, we cannot afford to follow the kinds of practices (both cultural and financial) they have pursued here. To respond successfully to the problems wrought by of brain injury, we have to provide a project that appeals to the diverse population that get injured. Where Rusk have chosen exclusivity and specialism as the guiding principles of their service, we must instead continue to choose inclusiveness and diversity.

After my visit I email Ellen to say thank you. In her reply she says that what Headway are trying to do sounds daunting. I suppose it is. But maybe not as daunting as she thinks. So much of what Rusk are doing is based on the idea that the staff must treat the Trainees, must take responsibility for their progress, must provide all the answers. While at Headway East London, we have always started from other direction, assuming that our members have the answers themselves. That, as a group, they contain the greatest resource of expertise on brain injury available (I did a calculation a little while ago. I worked out that, between them, our members have over 800 years of experience living with their injuries). The staff at HEL take it as their duty to work together with the members, to help them turn their answers into solutions, into new situations and relationships and occupations that benefit themselves and the community at large. We don't postpone participation until after some hypothetical end of treatment, we take participation as the starting point. We don't set identity and self-acceptance as the final reward at the top of the mountain, we start with it from day one. Our pyramid is the other way up. I have offered an open invitation to Ellen and everyone else at Rusk to visit us. I would genuinely love to have them. I can't imagine what they would make of us.

Sunday, 7 June 2009

Sunday 7th June.
I go for a run. I buy food. I talk to my family on skype. I blog. I realise I have spent most of this week sorting out where I am staying. It has been a lot of work. I realise also that I booked too many visits in for this trip. I have only three weeks left. Tomorrow I will start a four day visit at Yehuda Ben-Yishay's Brain Injury Day Treatment Programme at the Rusk Institute for Rehabilitation Medicine. I'm looking forward to it, though I don't know what to expect. It will be the most intensive visit so far. The following Monday I am visiting Fountain House, the original mental health Clubhouse. I am also due to visit Ron Savage, who runs programmes in New Jersey. And I have said I will go back to DC to visit the Youth Court. It seems like too much. I will not commit to anything more.

In the restrooms at Cleveland airport there are automatic hand-towel dispensers. Each time you tear off a piece of paper another one rolls out. It just keeps going, as long as you keep tearing them off. It reminded me of Eddie at Headway. Sometimes I hold out my hand and say to Eddie 'Give me five.' He slaps my hand and holds his out flat. I slap his hand and he lifts it up ready to go again. He keeps doing it as long as you do. He gets sort of stuck in a loop, like the towel machine. I wonder how everyone is at Headway. I imagine they are probably well. I'm looking forward to seeing them again.

Saturday, 6 June 2009

Saturday 6th June.

My sore throat has gone but now my nose is running. I'm awake much of the night. Donna's cat, Gulliver, stays clear of me. I pack my stuff and get a cab over to Tamara's place. I am terribly tired. She gives me tea and half a bagel. She draws me a map of local things. I give her some money and take the keys and walk over to the apartment on Lafayette. It's perfect. There is nothing in the air. From the window I can see the Empire State, the Chrysler Building, and Brooklyn Bridge. Guy has sent me a message. He has decided not to give me any of the money back. He says 'It's gone where it's going and it ain't coming back.' He says he doesn't care what I do with the set of keys he gave me. I can throw them in the Hudson river if I want. It seems melodramatic to me. It's as though he's trying to avoid meeting me face-to-face. Like we're enemies. I wonder if perhaps he feels bad about keeping the money. It's weird. We made friends on Facebook, so I can see his status updates and photographs. There's one of him smiling, holding a baby. One of him in a hat, kissing his girlfriend. I wonder if Winston would begrudge me this mistake.
Friday 5th June.

It rains all day. I visit three more places from Craig's List - all of them in the Park Slope area. Two are being sublet by Tamara. She is Serbian. She tells me about her family. She runs for the crossing when the red hand is flashing. The two places are very good. One is a room in her own flat, the other a studio on the 8th floor of a building a few streets away. It has a view of Manhattan. It's quiet. I have been walking in the rain. I bought an umbrella, but I am cold because I only have a thin sweater. All my stuff is still at Guy's place, up in Bushwick. Tamara lets me borrow a jacket belonging to her dad - a heavy black cotton thing, ex-army I think. She is so nice to me, I almost rush into making a deal again. She offers me the keys. I say I'll think about it and talk to her tomorrow. I see one more place in the afternoon but it's smaller and I would be sharing with two people. I decide to leave the decision until I get to Donna's. She has said I can stay another night.

I worry that I'm imposing on Donna. She is working a 12 hour shift today: 8am until 8pm. I worry that she will be tired and regret letting me stay. But when I see her she is in a good mood. She is incredibly easy-going. She tells me about the births at the hospital and we look at film reviews. There is nothing either of us want to see. She says why don't we watch Angels and Demons? I tell her that's a terrible idea. Did she see the first one? The Da Vinci Code? It was supposed to be awful. 'That was a good film! Where they steal the painting...' she says. I look up Rotten Tomatoes and read her some of the bad reviews. She says 'I've never even heard of Rotten Tomalfies, anyway.' My accent is throwing her off. Eventually we work out that she hasn't seen The Da Vinci Code. She's confusing it with The Thomas Crown Affair.

I email Tamara and tell her I'd like to let from her. I say I'd be happy with the studio or the room at her place. I email Guy and tell him I won't need the room any more. I say I'm sorry. I ask if he could give me some of the money back.
Thursday 4th June.

I have made a mistake. Guy's room is incredibly noisy. I sleep badly and wake up with a sore throat. I wonder if there is something I am allergic to in here. Mold or dust. I agreed to stay here until the end of next week. I gave Guy $400. I rushed into it. I wanted to find a place. I wanted this place to be OK. But it isn't. I need to be able to sleep and concentrate for my visits. I am going to be at the New York University Day Programme next week for four days. I am anticipating it will be tiring. I am already tired. He seems like a nice person. I'm hoping he will give me some of it back. Craig's List seems to be teaming with places to let. I go down to South Brooklyn and visit two places - one on Wykoff and one on Atlantic Avenue. Neither are quite right, but both are better than Guy's room.

In the evening I meet Donna and we go into Manhattan for a party a friend of her is throwing. He's called Ben too. He's a sports promoter. The party is to celebrate a merger between his company and another. It's at a place called TenJune - an underground club in the Meatpacking district. On the website it has a video of rich and sexy people dancing in the dark. P-Diddy makes an appearance. When we get there, the place turns out to be tacky. Aparently Ben has paid $30thousand for the place. But, bizarrely, the catering is provided by KFC. I haven't eaten KFC in living memory. The lady asks if I want some 'Hot Wings'. I say yes. This is the wrong answer. Donna's friends are nice, but we don't stay long. Back in Brooklyn I ask Donna if I can stay at her place again. I don't want to go back to Guy's. She says sure. At this moment she is my favourite person in all of New York.
Wednesday 3rd June.