Able Bodies: Parents Are Professionals

national | health / disability issues | news report Monday June 27, 2005 00:54 by Miriam Cotton

Gai Charis, who lives near Skibbereen, is in the process of putting together a book about the experiences of parents of people with disabilities. ‘Parents Voices’ is intended to be a collection of case studies which looks at aspects of how institutions, professionals, service providers, schools and others interact with families who have a responsibility for finding support services for their children.

This is a topical issue – particularly so in the light of the shocking experiences of the O Haras in Co Meath. The O Haras first came to public notice in a documentary programme a couple of years ago which looked at the difficulty the family were having in finding support services for their autistic children. It might have been assumed that the programme would be an incentive for the local authorities and others to take action and provide the help which the family so badly needed. Instead, in the two years since the programme was broadcast, very little was accomplished. Understandably frustrated by the delays in provision and concerned about the failure to recognise the importance of early intervention for their children, the O Hara’s resorted once again to highlighting their difficulties in the media. Red faces all round? Apologies? Swift action to come the family’s aid? Not a bit of it. Instead, the authorities descended on the O Hara family home with a Garda presence and took four of their children into care. After a week of anguish they were released on the order of a judge. However, the family are prevented from speaking to the press.

It is difficult to come to terms with the vindictiveness and contempt that are apparent in this action against the O Haras but in truth, for many people who share their frustrations, it confirms the growing evidence of widespread official resistance to the needs of people with disabilities – and those of their families. There are multiple reasons for this resistance but Gai Charis is surely articulating one of the most insidious of them when she cites the National Disability Authority’s 2003 report: ‘The report says that one of the greatest sources of stress was not the disability itself but negotiating the systems that are supposed to be there to help’.

‘As it happens, I have experienced this situation from both sides’ she says. ‘I’ve been involved in education at every level as a qualified teacher myself – Pre-School, Primary, Secondary, Special Needs Education and also as a lecturer in Education and Social Policy at the Bristol School of Education. I can say that when I spoke as a professional, everyone listened. When I speak as a parent, nobody listens.’

This point was brought home starkly to Gai recently when she was visited by an Education Welfare Officer who questioned her decision to educate her son, Connie, at home. The Officer’s comments were surprising: Didn’t Gai think that coping with the education of one child for 25 hours a week was ‘a lot to cope with’? ‘What about your own life?’ and so forth. ‘In my work I used at one time to be responsible for teaching 13 children with special needs on my own so I was fascinated by the apparent double standard that was being applied. If one child is too much for a dedicated adult, then what does that say about the normal teacher-pupil ratio in schools! In fact working with a child on a one-to-one basis is very rewarding and you don’t have to be a teacher either to be good at it.’

Many people would agree that there is a fundamental lack of respect for parents among professionals who can exhibit a defensive and bunker-like mentality within their respective organisations about engaging cooperatively with concerned parents. Some proactively discourage parental involvement which is of course against all of what is in the best interests of the child, to say nothing of the frustration and added stress that is caused to the family by the very people who are supposed to support and cooperate with parents in doing the best they can for their children. The people with the greatest knowledge of their child’s disability (aside from the child themselves) are the parents and often they know more than the professional who is assessing or providing for the need. Parents are professionals too – they have to be. They have to understand everything about their child’s condition and the treatments that are available. They live with it 24 hours a day. They also know, and this is a point that is constantly overlooked by institutions and organisations, how the disability affects their particular child because each person will have many symptoms unique to them – whatever their disability.

****Changing Attitudes Costs Nothing****

The importance of working cooperatively with parents has been recognised in practice in other countries where parental advice and input is actively sought out as a vital part of understanding the needs of the child. Charis says ‘The NDA 2003 Report also concluded that changing attitudes and practices costs nothing and yet it would make an immense difference to the situation. It recommended this as one of the biggest changes that was needed in current service provision and practice. Key points that were extrapolated from people’s accounts were that: the system exists for those within the system; disabled people exist for the system – not the other way around; people are talked at but not listened to – and frequently patronised; attempts to be heard are dismissed and/or regarded as ‘troublemaking’; parents and other family members are pathologised themselves which results in intrusive and inappropriate interventions; the ‘help’ which is offered often doesn’t help at all – there is often a mismatch between what is needed and what is provided; there is insufficient respect for the privacy and normality of the family’s private life - people’s lives are no longer their own.’

‘There is no dialectic at work within the encounter with professionals’ continues Charis ‘people are judged and passed comment on but there is no opportunity for a return of views in the process. Negotiation of bureaucracy is a nightmare because there is often an impenetrable wall of administrative obstacles – letters and phonecalls go unanswered. Officials refuse to say who is responsible for any particular issue or decision. If you do manage to find someone who will acknowledge their responsibility you encounter very stressful intransigence and end up being passed around to people who frequently say "I am only doing my job". The time factor is also huge – and for people who have far less time than most others, it is soul-destroying to have to devote so much of it to trying to find help. The frustration is immense.’

Charis believes that the way around this is not best served by forming discreet ‘support groups’. ‘I find the concept of the support group a ‘victimy’ kind of thing’ she says! ‘In any case, these problems are shared across all disability types. What is more empowering is the concept of parent networking which is more organic and effective in the way it functions. Most of us don’t have the time for typical support group activities like fundraising or organising headed notepaper for example, but by keeping each other informed as and when it is needed and by staying in touch with contacts within professional and academic institutions, research institutes, and local, national and international public representatives we can be much more effective at bringing the issues to public notice and at trying to improve accountability for the way things are being done – or not being done as the case may be.’ She just might be onto something.

Contact: gaiacharis (at) eircom.net