Ohio State University (OSU), Columbus, Ohio. The biggest campus in the United States. Some people tell me there are 50,000 students, some say 70,000. The town is consumed, with every house for streets around being rented out to accommodate the legions. The faculty includes every subject you can imagine. The sports stadium has 90,000 seats. Apparently they get filled pretty often. The OSU sports budget is a hundred million dollars a year. There is a five star hotel. I am here to meet John Corrigan and the TBI Network team at the Medical Centre here on Campus. I will spend two days with them. I meet Debbie and April first and explain myself to them. They tell me how the Network functions. An hour later we sit down with John and I get further details. The Network began eighteen years ago. It covers Franklin County (Columbus and surrounds) with a population of somewhere over a million people. There are six Case Managers. They try to keep it to around twenty-five to thirty active cases at any one time, but over all they have approximately 150 clients. They receive around sixty referrals per quarter. Although brain injury is one of their inclusion criteria for clients, the Network is primarily funded as a drug rehab programme. I ask John why. 'Becuase it's easier. When you look at these people and the problems they have, drugs and alcohol are high on the list. When we started out we were finding a high proportion of our clients had these dependencies. We were making referrals to other rehab programmes but finding they had people with TBI they wanted us to take off their hands. We would take one person along and they would give us three in return.' John has also led some significant research into the co-morbidity of TBI and mental health problems. He says up to 60% have depression, schizophrenia, bi-polar or other significant psychiatric problems.
There is a relatively high rate of re-referral to the team (about 13%). Often it's individuals who have previously completed the programme but have fallen on hard times again. The courts also make the programme a parole condition for a lot of people. One person has come back eight times. They try to work with people as long as they are need support. They find other agencies often lack understanding of brain injury. Traditional drug programme are often too rigidly structured, not allowing enough time for people to get hold of each step before moving on to the next. The Network runs a series of support and education groups, but they don't ask people move on until they're ready. They can stay in each group as long as it takes.
They also offer vocational assistance based on IPS (Individual Placement and Support). 'All are eligible,' says Debbie, 'not all get work.' She says other programmes take too long over getting people into placements. People with TBI lose track or go off the radar if they're left hanging around too long. At the TBI Network they do their best to get people into placements within two weeks of signing up. 'During groups here at the centre, we get them to work out their own hypothetical businesses. We ask them who they would want to employ. It gets them thinking about job interviews and applications from the position of the employer.'
I meet Peter, one of the Team's clients. He tells me the Buckeyes are the best. He's proud to be a Buckeye. 'I'm American by brith, but a Buckeye by choice.' He tells me about Eddie George, who won the Heisman Trophy in 1995. His wife was on Survivor. Troy Smith won the Heisman Trophy too. And Vic Janowicz. And Hopalong Cassady in '55. OSU has more winners of the Heisman than anywhere else. Apart from Notre Dame, maybe. David has a problem with crack. He started smoking after his head injury. He says he's lost everything. He has to sell his house. He can work but every time he earns some money he just blows it on crack. 'It's a wicked drug,' he says. He's been through the TBI Network programme here at the OSU medical centre before. At first he didn't want to do it again because the court told him he had to. He doesn't like being told what to do. But now he's finished his probation and he's coming by choice. He want's to get clean. He's working with Max, one of the Network Case Managers. The three of us - Peter, Max and I - go along to an appointment at the clinic. Peter tells the doctor that he won't take pills. 'I only smoke things, I won't take any pills. There's nothing wrong with my mind. What are pills going to do? You can't fix my brain with pills.' The Dr says he might be able to get Peter onto an inpatient drug programme here at OSU. Peter seems happy about that.
Mirror lake, on campus. John tells me has tried to raise awareness about it. Students often throw each other in, not realising how shallow it is. 'We have about one spinal injury every five years.' We go for lunch at the Faculty Club on campus. The food is good.
John is circumspect about his achievements.
'My only regret is that in twenty-six years of working in the field I can't point to a single major breakthrough, a single significant step forward in helping people with TBI.' I ask him if he's talking about treatment. I say that treatment per se seems like a distant prospect to me. I talk vaguely about stem cell technology, about how hard it is to imagine anything like this working. (It's something I've thought about: even if you could get tissue to grow in the right places, how would the new cell populations integrate themselves with the existing brain - how would they organise themselves into something useful, something that approximated the function of the missing tissue? How long would this take?) I say perhaps real breakthrough could come in the form of social innovation, of political and cultural action of the kind proposed by Edgar Cahn. 'I'd take either,' says John. I don't care where the progress comes from or what form it takes.'
We talk a little about the Americans with Disabilities Act. 'Frontal problems in particular have to be better accommodated by the Act,' says John. 'The ability to make decisions about things outside of the present moment is essential in our society. I like to say that people with frontal brain injury have 20/20 hindsight, but not 20/20 foresight. The emphasis is so often placed on cognitive regulation, the ability to inhibit impulses, to act with restraint. But what we realize about high achievers in our culture is that they have both cognitive and emotional influences on their decision making - they are equipped to defer reward and to inhibit themselves but they also have passion, a genuine emotional intensity that drives them. The frontal systems are about the fine regulation of these competing but equally important processes.' I tell John what I've heard about civil rights - how people with cognitive impairment have been excluded so far from disability movements. I say that the general means of effecting political change (lobbying, litigation) are, by their nature, cognitively demanding and thereby inaccessible to people with brain injury. I tell him my theory that people with cognitive and learning impairments represent a challenge to Western values: we say that all people are born equal, that our societies are inclusive, but continue to set functional minima in terms of reason and intellect, to believe, as Thomas Jefferson did, in steady progress for all, towards perfection. People who acquire impairments through sickness or injury, people who get less able, do so in direct contradiction with this mission. ‘It’s true,’ says John. ‘If you look at the great political movements in American history, they have all been made with reference to that same project. If you look at Lincoln – when he took on slavery, he argued it in terms of the Declaration of Independence, of equality of opportunity. FDR did the same thing during the Great Depression. It’s what’s become known as the American Dream – to go out on your own and achieve things by your own merits, without the help of others. But that Dream is inaccessible to people with brain injury because they have so much trouble thinking and behaving strategically.’ John continues: ‘If you think about the way immigration has happened during America’s history, you also see a selection bias towards pioneers. People who come to America do so because they buy into the Dream. What you have here is a nation of people who believe in the independence and freedom of the individual – in individual responsibility and reward. And we are obsessed with work. Achievement is too often mistaken for happiness. There are many ways to be happy and proving yourself through achievement is not necessarily the quickest or most reliable. We’re not good at valuing people who need support doing things for themselves. We’ve put more effort into valuing returning soldiers lately, but I don’t know how good a job we’re doing.’
There is one prospect on the horizon, one possible breakthrough of the kind John is looking for. ‘But given the foregoing proclivities,' he says, 'you may think it monstrous…’ He's talking about Deep Brain Stimulation (DBS). It’s the technique of correcting neural activity by inserting stimulating electrodes into deregulated cortical areas, used with some success for Parkinsonism and other tremor disorders. John explains that this exact process is now being perfected for frontal brain lesions. ‘They’re working on it right here. The key discovery is that cortical tissue relies heavily on local inhibitory activity – the cell populations regulating their neighbours.' A lot of neurological problems are related to the loss of regulatory action that balances activity. By inserting a stimulatory electrode with a steady current, the ‘noise’ – the excitatory peaks and troughs that impair function – is cleared up. In the case of Parkinsonism, DBS is astonishingly effective in canceling out the condition's disabling tremors. If the technique is used for other cortical regions, the functional implications are something altogether different. John describes an experimental case involving a woman with chronic depression. ‘They had the frontal electrodes in and conducted an interview with her about her life. During the interview they steadily increased the regulatory stimulation and it was amazing – you could clearly see her answers becoming more positive.' This technology is coming, he says. ‘It will be with us in the next five years.’
I say there’s something creepy about it. He says ‘yes.’ I ask what it represents. He says he doesn’t know. We speculate on how it will work. DBS equipment is generally controlled in same manner as a pacemaker (in fact this is exactly what it is) – a box implanted somewhere in the torso that allows the physician to calibrate the level of stimulation. Will patients eventually be given remote controls? How will we know what a ‘normal’ mood is? Or ‘normal’ frontal function? John says policy has already been passed against the use of the technology for ‘tune-up’ purposes, for healthy subjects who want to dial up their level of function (it’s not even clear to me how this would work). This topic seems to bring an end to our discussion. The implications of DBS are transformative, alien. The practicalities are hard to speculate on. There are many unanswered questions. I wonder how likely the prospect of eradicating cognitive impairment through this (or any other) method can be. If it proves a significant and affordable treatment for frontal disorders, it raises a significant question, as John implies: by eradicating the dysfunction, would we remove the need for social accommodation, for political and cultural change? The two agendas - treatment versus accommodation - do appear to stand in opposition to one another. In some respects this is the same argument currently being provoked by research into congenital conditions like autism and Downs: about the morality of removing people with these conditions from the population by means of genetic screening and abortion (now increasingly feasible). Though not treatable, these conditions may soon be preempt-able. But should they be? For me the answer is very plainly no because I believe people with these conditions are valuable. The same can be applied to psychiatric conditions. I may well be wrong, but I hold the conviction that a great number of people can live with mental illness successfully and that the need to 'treat ' it with medication (as well of the effectiveness of doing so) is typically overstated (see, for example, the work of Joanna Moncrieff). A world without mad people would, to me, be a strange and pitiable one. Due to my connection with the people at Headway, my instinct is to be suspicious of the idea of treatment for brain injury also. Perhaps it seems counter-intuitive, but in order to be a good advocate for the people I work with, I have to argue for the intrinsic value of their injuries. I have to say that having a brain injury is not necessarily a bad thing. That to have impairments, however profound, is not inherently negative, that being strange or difficult or ridiculous or impossible to understand might be, in some way, an important and valuable thing. To be someone who cannot function in our society as it is presently arranged has to be, for me, something worth being.
But if you ask me how many of the people I work with would share this view, how many of them would turn down a magical 'cure', the chance to return to life before injury if it were offered, I would not be able to answer you.
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