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Questions & Answers About UKIA
First, the historical bit: UKIA was founded in May 2000 by a group of individuals who shared common experiences of what it means to be born 'intersex'. The people involved in the enterprise had already researched the range of support available to the intersex community in the UK and overseas since there was no desire to waste time 'reinventing the wheel' by duplicating the excellent work already being done by existing groups. The picture which emerged was that of a highly organised world-wide support network of condition-specific support groups, These groups had been set up by individuals whose knowledge of a specific intersex condition was informed by personal experience as either affecting themselves or their children. Having lived with or alongside a condition, they were best placed to offer support and advice to others, be they intersex or the parents of intersex children. A major area of concern for many of these diverse groups, is the medical aspects of intersex conditions and ongoing research into such matters. Accordingly, each group had worked hard to establish close working relationships with professionals, both medical and allied specialisms who were working in the field. The most successful of these relationships are models of how providers and those in receipt of care, can work together as full partners. But we identified a gap. In the UK there was no condition-independent campaigning voice addressing the wider, non-medical issues which affect the lives of intersex people. It was primarily to provide such a voice that UKIA was founded.
The names which appear on the UKIA web site are those of UKIA's Director, Jay Hayes-Light, and Secretary, Mairi MacDonald. The main criteria for founding and organising a group such as UKIA must be in-depth personal knowledge of the responsibilities covered by the group. Mairi is a writer with wide experience in the areas of politics and social affairs, Jay has a background in scientific research and holds a Doctorate in the effects of brain injury on learning and behaviour. His main specialism has involved assessing and supporting children/young people with mental health problems and severe behavioural difficulties. Mairi and Jay also bring to their work in UKIA considerable experience of campaigning - Mairi in the field of human rights and discrimination, and Jay (who is a wheelchair user) in disability rights issues. As useful as such areas of individual expertise may be in a wider context, it is personal experience of what it means to be intersex that really informs the work that UKIA sets out to do. Whatever their respective professional or private involvement, both Mairi and Jay have also experienced life as intersex people. While UKIA is grateful to accept support and assistance from non-intersex people, all our activists are intersex people and all our policies and decisions are taken exclusively by our intersex members.
Our own society, like so many others around the world, is made up of interlocking layers and the groups which exist within and across these layers. One of the abiding truths of our western culture is that every minority group needs to co-exist with their peers in the wider society (unless they choose to go and live on a desert island, then they just have to cope with each other!). In order to do this, it is necessary, sometimes in the name of survival, for the members of a particular minority group to be aware of the sociological aspects of this co-existence and how to control the interaction rather than allow it to control them. Such co-existence should come about through mutual respect and understanding, but it is a fact of life that many minorities succeed or struggle according to the level of acceptance afforded their group. In a moral sense, no human being requires the permission of the majority to exist, but in the harsh truth of the real world, they do require acceptance based on understanding in order to thrive and sometimes this acceptance has to be fought for. Non-acceptance of others is based on many aspects of human psychology. Amongst other things, it can be based on fear, misguided sense of superiority (which may be a cover for insecurities) or some indefinable dislike of difference, but it also rests firmly on ignorance, for out of ignorance comes fear and the other emotions which feed prejudice. We often hear that prejudice and bigotry should be eradicated through education rather than a punitive response. If only that were true. However, beyond the theory, in the real world that most of us inhabit, education can take a rather long time to bring about change and whilst society negotiates the learning curve, the casualties of ignorance continue to accumulate. Education, whatever form it takes, must be underpinned by legislation to add 'teeth' to the educator's message. These two factors influenced the founders of UKIA to prioritise education and political campaigning across the full spectrum of intersex concerns rather than duplicate the type of support, research and medical liaison which is already being ably covered by some other groups. In other words, alongside the very real and important medical aspects to some intersex conditions, there are burgeoning social and political aspects which intersex people must deal with also.
The question 'how long is a piece of string?' springs to mind here. As stated above, education can take many forms. The founders of UKIA are all experienced users of the new technology and our secretary, Mairi, has extensive experience of working with the media. One of our priorities is to inform and guide the broadcasting and print media. Recent projects have involved advising researchers and producers/directors of television documentaries; providing in-depth information on intersex matters for journals such as the 'New Scientist' and supporting a research student to complete a major thesis on intersex conditions. There is some involvement with the health professions which takes the form of providing advice and information to individual community health care staff and teams.
Absolutely not. UKIA does not attempt to either diagnose or suggest treatment for intersex conditions. This would be impossible (not to say unethical) to achieve when the only knowledge we have of a particular case is an e-mail or information conveyed in a telephone call. This role is not what UKIA was founded to do. Groups such as UKIA can be at our most effective when we act to refer people to health and welfare provision and to peer support groups, as well as aiming to educate the general public and the caring professions about intersex conditions. Imparting information on the range of support and facilities available to enquirers, and the options available to them, empowers people to make decisions about their next step and equips them to be a partner, rather than a passive 'consumer' in consultations with the professionals who will assess and treat them or their children.
Another vital area we have identified is providing advice and support for parents. Dr. Jay Hayes-Light has many years experience in working with and advising parents. However, as a general support and campaigning organisation, UKIA does not presume to offer personalised advice on the actual conditions described to us by enquirers. As we say above, UKIA does not set out to either diagnose or suggest treatment in specific cases. When we are approached by enquirers, whether or not the caller can clearly identify a specific condition, the response is to offer support by explaining general details of what exactly is inferred by the term 'intersex' and what social and health resources are available nationally. The next step may be to refer the enquiry on to a relevant condition-specific support group which is in a position to be able to offer further assistance through peer support.
The absence of a telephone number on the web site is due to the fact that UKIA (as with so many support groups), was founded and run by volunteers. Even volunteers have a private life and whilst unrestricted access to a telephone support line would be desirable, in practice it would be difficult to staff and we simply do not have the resources to provide such a service. What we do offer is the opportunity for enquirers to initially contact us by e-mail. After this first contact, we are quite willing, where appropriate, to continue support over the telephone.
No more than among the rest of the population. However, the founders of UKIA know first hand what it means to be a child who is 'different' in a school where being so can sometimes place one outside the security of the group. Thankfully, most members of the intersex community, in spite of many other problems, grow up in a role where their gender identity is reflected and supported by their nurturing. Others, however, know only too well the extra pain of being brought up in a gender role at odds with their inborn sense of self. This serves to add a further burden to the potential vulnerability of the intersex individual. Caught in this trap, some people have no alternative but to attempt to 'fit in' as best they can, for as long as they can and conform to an identity and life-style that is constantly at odds with the truth. This dichotomy should not be confused with the condition of 'transsexualism' where an individual is entirely of one sex phenotype, but feels that their outer appearance conflicts with their innate sense of self. It may be that there are some overlaps between trans people and those intersex people who experience gender role problems, but the only link is that both groups may take a route to 'transition' across gender roles. As Mairi MacDonald says in her piece "Intersex and Gender Identity" on the UKIA web site - "And, as I learned more about my self, a fundamental difference between people like me and those in transition who were "trans" began to surface. I was transitioning out of a role assigned to me, most trans people seemed to be similarly transitioning out of but they were also transitioning into. Equally valid but with different objectives". Homosexuality is about sexual orientation and there is no known connection between intersex conditions and sexual orientation. The incidence of homosexuality amongst intersex people is probably no different than in the rest of the population.
No. With regard to the large and complex area presented by intersex conditions, there are bound to be some overlapping of functions and each group must decide for itself where its priorities lie. It is self-evident that a condition-specific support group is best placed to educate people about the condition they support. Registered charities must, of course, be careful not to breach the Charity Commission's conditions for registration, which require that a charity be non-political in order to qualify for registration. At present, UKIA is under no such restriction. Most people are ignorant of the conditions attached to registration of charities and there may be an assumption that only a 'registered' charity is a credible and trustworthy enterprise. This misunderstanding would however, relegate some of the most active and effective campaigning organisations which exist in this country to a devalued status. The strength of the vast spread of charities existing in the UK, is that they exist to do what they do best, rather than all follow the same blueprint.
UKIA is funded entirely from the pockets of the volunteers and through donations. Currently, we do not charge for membership and receive NO funding of any kind, official or unofficial, from any source. As we have opted for the moment not to become a registered charity (which, as described above, may compromise part of our role) we do not have the ability to reclaim VAT on expenses. Return to Main Page
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