David Pityonak in his paper Implications and Recommendations For Policy Makers (2003), stated that loneliness is the only real disability (see the paper here).
The Loneliness of the Service User
People who are in services are lonely. They have very few people outside the confines of the service, in their life. Most of the people in their life are those people who either use the service or those that are paid to work in the service. And for those that work in the service how many of these people stick around for the long haul. And can people who work in services really be the friend of the people they support? A real friend, who shares experiences like nights out, holidays, can be there when the chips are down; and cry and laugh together.
Think of your own life
Loneliness is a key issue. If you think about not having any close friends, or indeed an intimate other to live and share life with, the outlook would be bleak. So what can we do?
In our hectic life, sometimes solitude can be appealing. Taking a few hours out from the hustle and bustle of everyday life is not only ‘a nice to have’ but an essential so we can reflect and compose ourselves. But imagine after that solitude, was just more solitude. There is a difference between being alone and being lonely. The former a requirement to gather ones thoughts; the latter a state of being that can lead to mental and physical ill health, a low quality of life and a decline in skills and abilities.
What behaviour that challenges is a cry for help?
What if the people who challenge services through behaviour are actually expressing the reality of living and /or working in a system that promotes loneliness? Pityonak believes this. He believes that challenging behaviour is the inevitable outcome of being a service that promotes and even institutionalises loneliness. He asks the question how do services for people with disabilities promote relationships, building friendship into people’s lives. Services audit hygiene, safety processes, human resources, buildings, training but who audits the loneliness, who champions relationships.
Recent research (see the abstract here) carried out by Gilmore and Cuskelly (2014) looks at the Vulnerability to Loneliness in People with Intellectual Disability: An Explanatory Model. The model identifies three key factors in explaining the loneliness of people with intellectual disabilities (the research identified that people with intellectual disabilities are 2-3 times more likely to be chronically lonely than the general population). These factors are social attitudes and expectations; opportunities and experiences; and skill deficits associated with intellectual disability. These three areas are not mutually exclusive. For example, the fact that people with ID have not had opportunities to build relationships, means that societal expectations of this group of people are low, meaning that they have less opportunities to interact, meaning they cannot develop the skills etc etc.. A vicious circle for any person.
What can services do?
So this is where services can come in? Services should focus on creating opportunities for people to connect with new people; provide people with the skills required to build friendships and create an understanding in society that this group have potential.
Community for this group is essential. John O’Brien’s (a key figure in disability rights) five valued experiences are focussed heavily on community, two of these valued experiences being, sharing ordinary places and community participation. The Council on Quality and Leadership that generated a list of personal outcomes that should be present in a person’s life to maintain a good quality of life, have also identified that community is key. They have created a ‘Community for all’ tool-kit to focus services energy on developing and maintaining relationships for people in the community(se an outline of the toolkit here).
Loneliness is an issue for all with a disability. The BBC on their excellent Ouch blog identified that a quarter of people with disability everyday state that they are lonely. Again the people in the report talk about opportunities to meet others and public perceptions.
Asking the right questions
Let’s finish with Pityonak who states that we must ask the correct questions about the individuals we support. These questions (he identified by Mary Romer) are:
- Are there enough people in the person’s life?
- Are they people who have great passion and belief in the person’s vision of how the person wants to live their life?
- If not how can people with this attribute be found, or the hope be built in the people around the person at the moment?
Truly connecting with another human gives us joy. The circumstances that create this connection don't matter. Even those who work side by side in the worst natural disaster or crisis recall that experience as memorable. They are surprised to feel joy in the midst of tragedy, but they always do. (Pityonak)
Interested in making a difference
If you are interested in more details on education opportunities to skill you up to work in community focused service for people with disability click here.[/box]