Good afternoon all,
Attached the result of my labours on 'Community Access' Thanks to those of you who have contributed. Some I have quoted, all of you have influenced this paper.
I don't believe it possible to create a document that everybody loves, so if the opinions losely ilign with yours then I will be happy!
I have forwarded the paper to DSQ Rockhampton who will I trust send it on to DSQ Brisbane, where I hope it will be effective in loosening the grip of those who think that they know best what is good for Amanda, without consideration for what she wants from life.
I also hope that this paper will make others think about this matter, and cause a flow on effect elsewhere, to the benefit of people with disabilities.
Again thank you for your help, rgds John
Community Access
Background
When Margaret Thatcher said: "There is no community, only individuals", she saw the world as an institutional/medical model; rather than the way we understand it, as a matrix of relationships.
When de-institutionalization became a priority in Queensland, during the Goss Government, thinking changed: where residents had been seen as 'objects' or 'patients' there now was some appreciation that they were persons first, rather than just disabilities. Practice however changed very little. The ALS through the 'Villas' phase has now moved to 'institutionettes' in public housing. The walls may not be as high, but isolation is just as real.
'Community access' came into the bureau speak on the back of de-institutionalisation. "Community access is a bureaucratic term for a process, not an outcome. The outcome is quality of life. The question is "Does the process substantially contribute to the person's quality of life."1; or, as Jane Sherwin put it: "I think of 'community access' as a funding bucket, not a practice framework."2
Relationships
Relationships are the foundation stones of community, and living a valued life. Mohammed Yunis said: "Charity maintains poverty"3. The same applies to relationships. The poverty lies in the inequality. For relationships to have value and be valued, they have to be respectful relationships, which implies relationships between equals.
"Social Role Valorization (SRV) starts with the assumption that all people have equal value. If we deny that assumption we have to start making judgments on relative values of people, grading their rights and obligations, and may be even their relative right to live. Philosophically it would get us into a great deal of trouble. Hitler had a go - and observe the result! It is enshrined in the Indian caste system which is accepted but not admired, and Aldous Huxley played with it in his 'Brave New World'. So, although not original as a concept, the grading of the value of humans is certainly unacceptable in our society."4
Through developing relationships people become the centre of their individual communities, of which there may be many, serving different purposes and interests; all interwoven and overlapping the communities built by others. These relationship communities may range from quite small to a wonderfully complex tapestry, rich in texture and colour.
Building relationships with people is an important element, but not the only one. Relationships with nature, the visual arts, books, the performing arts, music, sports, and many other facets of life around us, are just as valid and rewarding.
Community Access
"'Community Access' is a very imprecise term, and is fairly meaningless as it is not how most people would talk about their lives. The name has also contributed to a 'dumbing down' of the possibilities, and a reduction in many cases to 'outings' that might have little or no developmental potential."5
'Access' may be the wrong term to use: "'inclusion', meaning accepting and valuing the person for who they are, within a relationship (between individual people; between individual and wider community; between individual, community and environment; and between one's individual and community's values and actions), is a more useful term."6
So, what then is 'community access' meant to achieve? Very simply:
"Community access should enable a person with a disability to become a participant in community life, through the building and maintaining of relationships."
Participation may be passive or active: reading a book, or writing one, listening to music or playing an instrument, watching a football match or being on the field, they are all forms of participation. Jane Sherwin warns: "I would recommend that services do the most potent things with people".7 Activities should not be just a filling in of time between meals, but be meaningful and fulfilling. Should all our endeavours be focused on a 'higher purpose'? John Pini does not think so, and "suggests that part of the message is about an ordinary life. One where when you choose you can go to the theatre, to sporting events, to have a meal out or to go to passive recreation. It is not every day to each of these, but the opportunity to be involved when you choose."8 Martin Pfaffel agrees: "For me "community access" varies from going to South Bank with my wife for a seafood fest to popping down to the local for a chat and a six pack or off to the Lyric theatre for a concert. Thank God I don't need legislation to do these things, but for some people with a disability and for some service providers, such simple activities become very complex."9
Focus
A respectful relationship demands that the focus is always on the needs of the disabled person: "Community must be constructed by the disabled person, and not around what the support team or family like to think of what the community could be."10
"To ensure quality the customer must come first. To be able to put the customer first we must know what the customer needs, not just in terms of shelter food and clothing, but also in terms of his or her spiritual life, personal development, aspirations, at times whims, or what is now loosely referred to as 'quality of life'. Particularly with disabled people who may have no, or poor communication skills, this assessment and continuing reassessment of needs is difficult and demanding and in many ways subjective. The quality of service however begins with the quality of this assessment of needs." 11
Where there is a lack of perception of options the support person may, and should, want to make suggestions for consideration. This is where 'assisted decision making' has a role, not in a didactic, paternal, directive, or otherwize disrespectful manner however.
"Assisted decision making is to enable ownership in a decision the person is not able to make by him/herself".
In this way the disabled person not only shares in the decision, but also shares authority and responsibility, empowering the person; as it should be in a respectful and equal relationship.
The bottom line
What is the pay-off?
My daughter Amanda's development in the last couple of years has been breathtaking. She has gained in confidence and self esteem. Her zest for life makes the sun shine brighter wherever she is and has a real effect on the people around her. She follows old and new pursuits with enthusiasm. The theatre is a particular highlight for her, the dressing up, being out in the evening, the programme, which gets examined minutely, engaging the usherettes in conversation, then the show, the synergy of light, colour, sound, and spectacle; then coffee after: these are big events in her life.
These things did not just happen, they are the result of funding used imaginatively and creatively by a team of very switched on, and very loyal support workers: "Whatever it takes!" says Charlie.12
Some years ago I asked myself: "What do I want most for Amanda?" The answer was simple: "An inclusive and meaningful life". Yes!
John Homan
180903
________________End of message______________________
Archives and tools for the Disability-Research Discussion List
are now located at:
www.jiscmail.ac.uk/lists/disability-research.html
You can JOIN or LEAVE the list from this web page.
|
