How do we support people with disabilites to have meaningful lives?

by Kathy O’Grady, Senior Psychologist.

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Darcy Elks, from Pennsylvania, came to the Sisters of Charity Services in the Midlands—St Mary’s, Delvin and Moore Abbey, Monasterevin—to meet with stakeholders, parents, service users, staff and managers with a message about inclusive lifestyles in a mainstream society. Darcy has lifelong experience in the process of de. institutionalisation; indeed, she worked as a volunteer in Willowbrook on Staten Island—which, during the 1970s, housed 5000 people with developmental disabilities. She knew from that formative experience that ‘one person can make a difference’ and that ‘our mindset powerfully impacts on what we offer people and how our assumptions can have a positive or negative impact on those we support.’

Darcy continues to work as an advocate for people with disabilities in Pennsylvania, now with more vigour than ever. Her daughter Mary, who is a vibrant 16-year-old with Down Syndrome, prompts her to think outside the box in terms of how we craft the individual supports that people need to have a customised service. Darcy refers to philosophical assumptions about beliefs and she holds that ‘having a vision flows from beliefs’. She fights against the reduced identity that is circumscribed by the ‘I can’t, versus I can, perspective.’ She refers to a passage in the Old Testament: ‘Where there is no vision, the people perish.’

Darcy is an exponent of socially valued roles—suggesting that we ask ourselves the question: for people of this age and gender, what does Irish society have to offer? Then ‘go for it!’ Quite simply, she reflects on a person’s identity in terms of personality, interests, gifts, calling, talents, competencies, dreams, roles, relationships, life experiences—and a clear understanding that if one is living with impairment, ‘what and how does it impact on lifestyle and identity?’ Darcy is convinced the society is a better place if everyone is present and she regrets the ‘life-wasting experience of negative roles that people with disabilities can experience in terms of rejection by broader society, i.e. the eternal child which becomes self-fulfilling, the lifelong client, the person who lacks control of their own life, the object of pity, and the burden of charity—versus positive roles that we experience, such as that of colleague, partner, sibling, home owner, voter, employee, car owner, professional, sports fan, consumer, etc.’

From social role valorisation (SRV), which derives from Wolfensberger’s teachings, the enablement, establishment, maintenance and/or defence of valued social roles for people with intellectual disabilities are paramount. From Talcott and Parsons, a social role may be defined as socially expected patterns of behaviour, responsibility, expectation and privileges. Darcy imagines that people were thinking about roles for you before you were born. She refers to model coherency and conceptualises roles as pathways that bring richness that impact on what we could call ‘a good Irish life’. Roles have a powerful impact on the image that one has in the eyes of others, including status and reputation. Further to this, the image that one has in their own eyes—self-mage including an image of acceptance, belonging, association, relationships, autonomy, freedom, personal growth, opportunities, the material side of life, and lifestyle. This can negatively impact if people live in ‘staff-land’, with only paid people in their life. Darcy suggests that model coherency (i.e., ‘is it a good fit?’) can be achieved by ‘walking with people in their life’s journey’.

While a lot of Darcy’s message is deeply philosophical and challenging, it also points to a dramatic change in the way that we consider service delivery to people with intellectual disabilities. She gives the example of her own daughter Mary, who at sixteen has a vision of a life built on her identity as a young woman, rather than somebody who, after leaving school, will be fast-tracked to a sheltered work environment. This also holds true for many young Irish people who require optimal individualised service planning, not just being offered off-the.shelf services.

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