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:


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.

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:

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.

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.

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.
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).

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.