Within This Issue
Do we care enough? Since people with PMLD are subject to the impact of the ethics and values of those who support them, how we should care is not always clear cut and requires ongoing reflection.
This edition of PMLD Link features the theme of ‘Rights, Values and Ethics’. Values and ethics are deeply situated and are complex, yet they permeate the daily life and experiences of people with PMLD. This edition of PMLD link highlights some of the complex issues and dilemmas that arise through the day to day experiences of living a life with PMLD; not only because the needs that arise due to having multiple impairments but also because societal barriers and attitudes interfere with the rights, freedoms and quality of life that we would expect. Communities and services do not always take the vulnerable position of people with PMLD seriously and care is not always taken to afford them their rights. People with PMLD rely on people who sensitively listen and contingently respond and need support to be provided both ethically and reflectively. This edition highlights some of the challenges to supporting ethical practice and celebrates practice that affirms human rights of people with PMLD.
We were overwhelmed with articles for this issue and would like to thank all contributors. Some are being put into the next issue since we just did not have enough space in this one. In this bumper edition a range of articles have been included, both from an academic, practitioner and family perspective. There is not space here to describe each piece, but we would like to highlight some of the cross cutting themes which we regard as important.
Community, friendship and belonging feature in articles by Andrew Colley, John Vorhaus, Ben Simmons, and Melanie Nind and Iva Strnadová. Following the same theme is an article by Trevor Boddington and Jane Thakoordin which has been reworked in part as a tribute to Trevor’s close friend Steve who died recently.
Lila Kossyvaki reflects upon the importance of practitioners doing research that is ethically based and involves as true participants people with PMLD and their families.
The importance of equal relationships between practitioners and people with PMLD and their families is brought out in different ways in articles by Rebecca Pender and Emily Woolman and Nancy Keeley explores the same theme with ideas about how one charity has sought to create and sustain an ethical organization.
Valuing people for who they are and developing practice that truly meets their individual needs, enthusiasms and situations are explored in articles by Peter Imray, Tracey Edwards, Sarah Clayton and Dreenagh Lyle.
Dreenagh’s article and one by David Abbey on home ownership also examine the economic rights of people with PMLD and the failures of our society’s systems and agents to recognise these properly.
Creativity and the value of beautiful things to all are explored in contrasting articles by Saima Kaur, Eleanor Gibson, Isabel Beck and, from an ethics perspective, creative and therapeutic arts by Carrie-Ann Sutton.
As usual, we also include details about a range of news, resources and training courses and conferences. In particular, we would like to draw your attention to the adverts herein for the third Raising the Bar conference in Birmingham on 25th October. If you are a family carer or education, health or social care professional, there is so much to be gained from this wonderful event. The fantastic speakers, exhibitors and participants do so much to exemplify the PMLD Core and Essential Standards, available on the PMLD Link website, as indeed do the articles in this issue.
Rachel Parry Hughes, Martin Goodwin and Rob Ashdown
