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Able Bodies: Jacqui Maguire
health / disability issues |
Tuesday July 26, 2005 12:41 by Miriam Cotton
Interview with a determined woman.
Some readers might derive encouragement and even inspiration from reading about the principles that have guided Jacqui Maguire through her challenging life.
Jacqui Maguire may not need an introduction to many people here in West Cork. As an active member of the local community and founder of the West Cork Social Club a lot of people will have encountered her on their travels. Weighing in at just 1½ lbs when she was born, hers has been an incredible journey through life so far. At 2yrs she was diagnosed with Cerebral Palsy and the determination of herself and her family to ensure that Jacqui’s life would hold as many opportunities as possible is truly inspiring. The story of Jacqui’s efforts to acquire a third level education has already been well-documented and during those 15 years she had to contend not just with the physical constraints of her condition (the least of her problems as far as Jacqui is concerned), but also with the resistant and prejudiced attitudes of educational administrators - many of whom had great difficulty conceding the possibility that her ambitions were achievable. Not only has she proved them all wrong but Jacqui has now, at 43, acquired an MA in Pastoral Studies at Maynooth - in addition to her earlier BA in Theology and French. Her thesis is the subject of this column.
The core of Jacqui’s thesis centres on the idea of the person – and the themes explored are more subtle and far-reaching in their significance than this statement might at first suggest. ‘I am a person the nature of whose disability is said to be Cerebral Palsy’ Jacqui writes and this is the key to her theory. ‘If you live in a row of terraced houses, you don’t think that each of those homes will be the same – you know they all have a similar structure but in most other respects they will be completely different from each other. They won’t seem the same when you are inside them. That’s how it is with disability. When I say to someone with Cerebral Palsy or whatever, “tell me about your disability”, I’m not looking for the medical definition –– after all, I can look that up on the internet and anyway it’s not what interests me - I mean “tell me about your disability!” The circumstances of each person’s experience are far more critical to their lives and they way they feel about themselves is even more important again. These are important defining features of living for so-called, able-bodied people who rightly take them for granted. We need to get away from ‘pathologising’ every aspect of the disabled person’s existence so that they stop being almost exclusively defined by the medical determination of their disability. A disabled person should be as able as they feel.’
Jacqui is nevertheless impatient whenever she perceives that people with disability are too ready to conform to a needlessly passive approach to their lives. This may seem a bit hard given how little opportunity many have to influence matters but she wants to see change. A critical part of her thesis relates to the role of people with disability participating in their own care and she believes that every relevant medical team should have a disabled person as an adviser and consultant. ‘There are so many ways in which the medical profession fails to understand. Often technically correct decisions are made which in fact are very much at odds with what is possible. There is a strong tendency to assume that what is true for one person is true for everyone. And so often the wishes of the individual are not even considered as being remotely relevant. I sometimes have the impression that doctors actually don’t know what I mean when I say something like “do you want to know what I think?” But it’s not rocket science – of course the person with the best experience of all the minutiae of their condition is most often the individual disabled person themselves. They are familiar with its cycles, symptoms and responses to treatments.’
Another important aspect of Jacqui’s thesis is its underpinning in strong spiritual belief – also an important factor in her life. ‘When I talk about “personalism” I don’t mean “selfish individualism” at all. ‘Realising “potential” demands participation’ she writes and for this to be possible each must be aware of the potential of others – it’s an idea that clearly requires a high degree of mutual respect for one another and it breaks down the notion of them (‘the disabled’) and us (“normal” people). ‘Because of my disability there are so many ways in which I am not disabled – I don’t suffer from many of the afflictions that ‘normal’ people have. I’ve got no desire to be any different to the way I am and often count myself lucky to have this perspective – and really, that’s all it needs to be – a different perspective’. ‘The thing that sustains me and motivates me is my faith but I think that any kind of firmly held spiritual conviction would do the same for anyone.’ In her thesis, Jacqui writes about the difference it makes to people when they learn to believe so that they can see, rather than having to see in order to believe. ‘People don’t have to be Christian to work towards this goal; they need only have faith in the progress of humankind’. In the future Jacqui hopes to work in the field of disability from a pastoral/personalist perspective. Although diffident about the worth of what lobby and other disability groups actually achieve in terms of promoting full participation for people with disability, she also wishes they would function in a less disparate way. ‘I believe that my model of working with disability cuts across all of this and in some ways makes it unnecessary’. Given what Jacqui Maguire has achieved so far we can probably expect that she will single-handedly turn this situation around. ‘They tell me I’ve got Cerebral Palsy’ she says ‘but I don’t believe them!’