RUTH KESZIA WHITESIDE

Ruth Keszia Whiteside is Manager of the People 1^st Programme, (PIP): 'Supporting People with an Intellectual Disability In Human Relationships, Self-esteem and Sexuality', Disability Consultant for FPWA (formerly known as Family Planning WA), Vice-President of DDCWA (Developmental Disability Council of WA) and a member of the National Executive Committee for WWDA (Women with Disabilties Australia). Ruth has published several articles, a selection of which can be located on the web pages of the People 1^st Programme at: www.fpwa-health.org.au/pip.htm Ruth and her partner and professional colleague Della Perry, who live together on the edge of the Swan Valley in Guildford Western Australia, are also both Co-Directors of Share WA (a privately funded research body committed to humanitarian ideals).

PIP was developed in 1994 as a unique programme offering a range of services intended to be dynamically responsive to the requests and needs of people with developmental or intellectual disabilities. Since PIP's inception the volume of services provision has increased by 500%, with many thousands of people having utilised one or more options for services. In 1999 the quality of these services and activities was acknowledged, when PIP was named the Western Australian and National Winner of the Australian Violence Prevention Awards.

¨ human relationship, self-esteem and protective behaviours programmes for students in education support centres, units and schools;

¨ education and professional development and consultations for service providers;

¨ short projects and activities according to availability of additional funding.

Interview with Ruth Keszia Whiteside

Do you see yourself as a Leader? What is your vision?

I don't perceive myself as a leader in any individualistic sense, but I attempt to inspire, motivate, energise, organise and make interconnections in the very best ways I can. I like to 'make things happen'. My vision, - and I think visions should strain toward the most ideal possible scenarios, - is for a world where 'difference' is about diversity, not about hierarchisation or objectification. I don't believe that an essential kind of 'human nature' really exists - in which people are 'naturally' hardwired to disempower rather than cooperate with others.

Of course the most common critiques of this kind of vision, tend to focus on the impossibilities and impracticalities of 'equality' in the so-called 'real' world. I would be first to agree that it is not enough just to attempt to circumvent these with wonderful ideals - one must take action. So I still like the now rather unfashionable Marxist notion of praxis which implies the infusion and indivisability of theory and practice - or the importance of linking changes in consciousness and attitudes to, and with, social changes. This also connects with the feminist standpoint theory I discussed earlier, which doesn't subtract our life experiences, social attitudes and conditioning when confronting issues relating to possibilities for humanity. I think then, that a vision should attempt to acknowledge and explain its own context, or its interconnections and relationships with other ideas and perspectives.

This is a really complex question, which requires a somewhat detailed answer - but anyway here goes:

I find very personally relevant the notion that the 'subjectivity' of women is not an 'individual' thing, but is formed (or at the very least informed) in and through our social and interpersonal relationships. This perception has also translated for me into the recognition that it is primarily the interrelationships - we experience - the interconnections we have (more than any boundaries and differences) which say most about 'who' we are and about the fabric of our lives. For these reasons, talking a little about my family's history might also help me to answer this question.

My mother and father were both born in Glasgow in the mid - 1930s to very poor families. My mother grew up in the infamous Gorbals tenements with a family of 11 children. One of her younger sisters, reliant on a wheelchair, had to 'bum-shuffle' up and down flights of stairs, and my mother contracted TB. My father's only remaining parent - his mother, 'disappeared' one day (he was 6 years old), and he wandered the streets of Glasgow with his younger brother for six weeks, living out of rubbish bins before being discovered by the authorities. Both boys were then sent to the Outer Hebrides as foster children. My aunt 'transcended' the limitations of her physical environment through writing, first biographies and later historical novels. Under the pen name: Christine Marion Fraser, her work has been translated into several languages and continues to be on best seller lists in Scotland. My mother recovered from TB, enabling our family (after lots of x-rays), to emigrate from Scotland to Australia in the early 70s. My father described his childhood in the Outer Hebrides in somewhat Dickensian terms - the upturned (but always empty) egg shells in the egg cups being displayed as a sign of a healthy diet when visits were made to ensure he was being adequately cared for. After and through all these things (and many other enormous obstacles), I think it was the palpable and hugely redemptive love shown by my parents for each other, for their siblings and for my sister, and myself, which confirmed for me the essential value of committed and loving interpersonal relationships.

Although very fortunate in terms of my immediate family and their support, adolescence was a gruelling time for me and I almost succeeded in starving myself to death - reducing my weight to that of a skeleton. I was struggling against a world I saw as attempting to form me into someone I didn't want to be - an appropriately 'gendered' female - with all the objectifying factors and features which I felt that entailed. I recovered, with a substantially enhanced personal understanding of what it was to feel 'different' and to be regarded as 'abnormal' in an often less than accommodating world.

Not surprisingly, I found that I felt comfortable working with people who, like me, were perceived to be 'different' in some way. I began work as a social trainer with people with multiple and complex disabilities in what were in the mid 1980s still very institutional settings. In my personal attempts to 'deinstitutionalise', I maximised and created recreational and social opportunities for everyone I regarded as 'locked out' as much 'as locked in' - where and whenever I could. Developing an interest in areas relating to human relationships and self-esteem education was then a short step, as the need for enhancement of social and interpersonal skills is clearly highlighted with increasing human interaction. In addition, a stint volunteering for the WA AIDS Council had raised for me the importance of what was then called 'safer sex' education for all perceptibly 'vulnerable' people in the community.

Following my work in human relationships and HIV/AIDS education I was employed initially as coordinator of a service to provide human relationships and sexuality education services for people with a so-called 'intellectual disability'. In 1993/4 under the umbrella of FPWA I renamed this service the People 1^st Programme and conceptualised with my partner Della, a philosophy for practice which attempted to acknowledge each person's uniqueness while also acknowledging the importance of social context (by involving and educating family members, peers, service providers and the general community wherever possible).

Can you outline some of PIP's key services and the audience for which this is designed?

PIP currently offers a spectrum of services including: one-to-one individually responsive educational sessions for people with a learning/developmental or intellectual disability (of all ages), school programmes focussing on self - esteem human relationships, sexuality and protective behaviours education, education for parents family members and service providers (encouraging situational education and consistency), service provider/professional consultancies and education, and community education at public forums, in educational and academic settings such as conferences and in written form such as articles prepared for a range of journals and magazines.

Who initiates the initial contact with PIP for its intervention and services ?

People can request education for themselves, or people who support or care for people with an intellectual/learning/developmental disability can with their consent, request services on their behalf.

Clearly, being proactive is always preferable to being reactive when it comes to education - especially with regard to protective behaviours - which is essentially about the prevention of all forms of abuse. It is very disturbing that some statistics indicate that 80% of people with an intellectual disability will have been sexually abused by the age of 18. While various researchers debate the exact figures, in our experience, disclosures of abuse are very common, particularly from girls and women, and have very often not been addressed before. One figure suggests that only 3% of sexual abuse cases involving people with developmental disabilities will ever be reported. When some abuses have been perpetuated over very long periods of time - almost to the point of being 'normalised', and when no education has ever been offered about rights to emotional and bodily integrity, this is hardly surprising. This also says everything about a very general lack of professional and social awareness and understanding of the severity and extensiveness of sexual and other abuses of people with a disability. This is not either a subject which many people feel comfortable talking about - so in a sense 'early intervention' in the form of proactive education is needed everywhere - and as systemically as possible.

How would you define the label of 'disability' and what challenges does your organisation face as a result of this labelling ?

It is really not possible to talk about 'labelling' or the 'categorisation' of people without also talking about the politics, which informs the labelling process. While for example, the diagnoses offered by medical and psychological professions may be experienced as a relief by some, permitting treatments or eligibility for financial, educational and other supports, the trade-off is a 'label' to which, very often, attaches a spectrum of negative attitudes and incredibly enduring prejudices. The 'medical model' of disability has more recently been taken to task by those who regard the 'social construction' of disability as more profoundly dis-abling than many of the other challenges people might have to overcome. At PIP we attempt to avoid the preconceptions which attach to labels and try to begin with the idea of each person's own unique 'wholeness'. We do not subscribe to the homogenising aspects of 'IQs' and 'syndromes' as any more informative about a person than the things they may wish to tell us about themselves. That said, our core funding from Disability Services Commission in WA, requires that people accessing our services be registered as having a 'disability', or that the students we provide education for are attending an education support centre or unit, and that they, (or their parents), are able to 'consent' to participating in our services.

Does your experience indicate particular problems that people with a disability are more vulnerable to?

In addition to sexual abuse, exploitation and abuses - physical, emotional, and financial are experienced very disproportionately everywhere by people with all kinds of disabilities. If we are fortunate enough to live long enough we will all find ourselves at some stage in need of the care and support of other human beings. This care and support could impact on every area of our lives from our most fundamental needs to a myriad of complex areas, which relate to our understandings of ourselves as unique personalities.

The present reality is however, that many people with disabilities are considered fortunate if they can even access the most basic forms of care and support to keep them 'functioning'. Very limited access to employment, accommodation, adequate or appropriate health care services - and poverty of opportunities and experiences characterise many people's lives. Cumulatively, these circumstances surely should be regarded as some vast and systemic form of 'abuse' perpetuated by the individualistic ideas and attitudes which sharply divide the 'successful' from 'others' in our society and by a focus on materialism and consumerism to the detriment of all else. It is obviously almost impossible to discuss these issues without invoking a spectrum of questions about values and their relationships to economics. While theoretical debates continue about socio-economic issues, it is social isolation and loneliness which people accessing PIP, almost invariably express to us as central in their experience. I think the 'loneliness' which both reflects and reinforces exclusion, is so underestimated in our society.

Are you satisfied with the types of government assistance programs available for people with a disability in Australia?

The short answer is of course no! As long as 'disability' is regarded as relating to "someone else", and as long as the range and volume of supports is under - resourced in every possible way, things can't improve dramatically. In fact, given the demographics of ageing populations, these problems are set to intensify. Once again, it seems to be about a pathological combination of attitudes and economics.

What problems does your organisation face with respect to adopting an inclusive approach and a feminist philosophy?

The philosophy on which PIP's services are based is 'feminist standpoint' theory. This approach is concerned with the ways in which we all internalise, to a greater or a lesser extent, institutionalised (stereotypical) aspects relating to our gendering, and then modify and remake these in our own personal way. (This theory also implies a positive utilisation of the 'interconnectedness' which many women identify as part of their gendering - not in a biologically determined or essentialist sense - but in the sense of accounting for very generalised aspects of conditioning and experience). But with regard to my first point, it seems to me, that the central observation of standpoint theory - the imperative to consider the dialogue between social determinations and personal experience(s), could equally well apply to question of 'disability'.

Clearly, for example, any person 'labelled' with a disability will not be able to avoid internalising at least some of the negative aspects associated with that label (regardless of the 'type' of disability). Quite simply we had to find a way of accounting for, and diminishing the negative things people had internalised about themselves as a person with a 'disability', (resulting very often, not surprisingly, in very poor self-esteem), while also educating as many people as possible about the importance of attitudinal change. An inclusive ('ecological') approach - working not just with individuals in isolation, but with family members, peers, relevant service providers and the broader community thus emerged naturally from these observations.

While the demand for the educational style of our services has grown at a phenomenal rate - we were recognised in 1999 as State and National winners of the Australian Violence Prevention Award, it is those individualistically oriented approaches and attitudes which negate the impacts of social context on personal experience(s), which we consider problematic.

What changes would you like to see to improve the 'inclusion' of people with an intellectual or developmental disability in society ?

Once again this is a very big question, but the changes as I have already discussed, relate mainly to attitudes. I think very broad social changes are required. I wouldn't be joking to talk about the entire remodelling of society involving a focus on shared humanity - on our similarities not our differences. Add to this equally and dauntingly vast questions about the nature of 'gender', the direction of bio-medical sciences and modern eugenics - things I have written about with my partner Della, and the list goes on. Essentially, I think it is important not to have an 'add and stir' mentality (adding the currants - the 'others' to a standard recipe), so that inclusion is merely tokenistic. It is also important to remember that people with a disability often experience many other diverse forms of discrimination. Of course none of us 'fits' (and that's the huge irony about discrimination), just one 'category'.

What are your views with respect to selective abortion and the Abortion laws in Western Australia?

In a paper I co-wrote with Della, available on PIP's web pages (www.fpwa-health.org.au/pip.htm): 'Stereotype, Segregate and Eliminate: 'Disability', Selective Abortion, and the Context of Choice', we discuss this question in some detail. While we support the notion of 'choice' with regard to abortion we also suggest in this article, that this 'choice' is never made in a vacuum, but is influenced by community attitudes about 'disability', and by the lack of supports available for people with a disability and for their families. To regard 'choice' as a somehow neutral possibility in a context, which does not account for or examine the values that inform our 'options' can hardly be regarded as real 'choice'.

That would be wonderful - but as usual, funding has a lot to do with such ambitions. We have also had requests for our services from Bombay, Singapore, Canada, New Zealand and the UK. Are there any sponsors out there ???????