an excerpt from Susan Stanfield’s forthcoming Community Support Worker Essentials: supporting people with developmental disabilities in their pursuit of the good life

 “We have only begun to sense the tragic wounds that so many [people with developmental disabilities] may feel when it dawns on them that the only people relating with them – outside of relatives – are paid to do so.  If you or I came to such a sad realization about ourselves, it would rip at our souls to even talk about it.”

(Perske, 1988)

People consistently rank relationships at or near the top of the list of indicators for what constitutes a good quality of life.  Human beings are social creatures.  Relationships give our lives meaning and purpose.  Having a network of family, friends, neighbours, co-workers and others who know and care about us not only enhances our quality of life, it’s also good for our health.  Research shows that “individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient social relationships.  The magnitude of this effect is comparable to quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity).”  (Holt-Lunstad, Smith & Layton, 2010).

Why, then, do our services focus on so many other things besides relationships?  We often put elaborate plans in place to address people’s personal hygiene and housecleaning needs, but pay relatively little attention to their relationships.  I’ve been to many staff meetings over the years where the agenda was entirely to do with household chores and personal care issues (a nurse we consulted with used to joke that if she’d known how much of her time would be spent talking about bowel movements, she might have chosen a different profession).  If relationships were on the agenda at all, it was often about problems between the staff and families, as in “how can we get Mary’s mother to be more consistent with Mary’s diet plan?” or “John’s sister dropped by again without calling ahead – we need to set some boundaries with her.”

It’s interesting to see what happens by simply putting relationships at the top of the agenda for team meetings; to spend some time talking about who’s in the person’s life, what’s going well with their relationships, and what more might be done to support this aspect of the person’s life.  By talking about relationships for even a few minutes before getting into the rest of the agenda, the whole tone of the meeting starts to shift.  Instead of focusing on how to get Mary’s mom to follow her diet plan, someone might say, “why don’t we invite Mary’s mom for dinner on Sunday?”  The question of John’s sister coming by unannounced gets reframed from a problem into an opportunity: “John really enjoys spending time with his sister – what else could we do to facilitate their relationship?”

Building a good life is not just about the tasks of daily living.  Given a choice between learning how to do laundry and making friends, most of us would choose making friends.  Relationships are core to our quality of life.  And the good news is, everyone wants relationships.  Our communities are full of people who are looking for more connection, more friends.  This is not just a disability issue, and in fact people with disabilities often have much to contribute to others who struggle with loneliness, much to offer in a relationship.  When we ask staff what they enjoy most about their work, they invariably say their relationships with the people they’re being paid to support.  Our own lives are enriched by having people with disabilities in them.  The opportunity to share this gift with people in the community is just waiting to be tapped.  We’ve met cashiers who tell us the highlight of their week is when “Brian” comes in to do his shopping; or a waitress who was moved to tears when we asked if we could take a picture of her and “Denny” (“he’s been coming here for years, and he always looks forward to seeing you,” we explained, “he considers you a friend”): it turned out she looked forward to seeing him every week too, and had been wanting to get to know him better but didn’t know what to do or say; she couldn’t see a way in, partly because Denny always had staff with him.  Her assumption was that only someone with special training could interact with Denny, and since she didn’t have this training, she couldn’t possibly have anything to offer him.

Families, too, are often looking for more of a role in their family member’s life.  We hear from siblings who would like to have a closer relationship with their brother or sister, but don’t see a way in to their life, often because they perceive staff to be taking care of everything.  Grandparents who have time on their hands and would love to spend some of it with their grandson or grand-daughter – they’re just waiting for an invitation.

Personal networks

Personal networks are the connections we have to other people, be they a group of friends we keep in touch with from high school, our family, the people we work with, or the people we see every day at the gym.  A big part of how we define ourselves is through the various networks we’re a part of, and our roles within these networks.  Through our networks, we feel connected, included, and valued.  We have different people we can call on when we need support, or during times of transition, for example when we’re looking for a new job.  Statistics show that more people nowadays find jobs through personal contacts than traditional job search strategies.  This is worth considering, given the high rate of unemployment among people with developmental disabilities.  How often do we enlist people’s family and friends to help find or create employment opportunities for people?

A good way to start looking at personal networks is by mapping out the different layers, or “circles” of relationships in a person’s life.  This approach, developed by Jack Pierpoint, Marsha Forest and Judith Snow, looks at relationships as a series of concentric rings around the focal person, where each ring represents different layers of relationships:

Intimacy – our closest relationships – typically a spouse, parents, children, best friend

Friendship – our friends, which may include family members if they are not in the intimate circle

Participation – people we see on a regular basis or share a particular activity with, but who are not close friends

Economic exchange – people who are paid to be in your life – eg. your doctor, counsellor, teachers, employer

What this exercise often reveals is that people with developmental disabilities tend to have more people in their outer circle (economic exchange) and fewer in their inner circles – in other words, more people who are paid to be in their life than who are there voluntarily.  This is opposite from what most of us experience.  However, it’s also common for people to have many names in their “participation” circle – people they know by name or see frequently, but aren’t (yet) friends with.  If there’s even one name that jumps out as someone the person might like to get to know better, that’s one potential new friend.  It’s a place to start.

This excerpt is from a book I’m writing on the changing role of community support workers, due to be published by Spectrum Press this fall.