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.

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