Due to many factors, (including societal perceptions and limited opportunities for social engagement) we know that living with disability, whether yourself or with a family member, can be very isolating. With this isolation can come a decline in mental and physical health, which in turn diminishes energy levels and the ability to support yourself or a family member as well as you might.
One way to find renewed energy, ideas and emotional support is to form or be part of a Circle of Support. Here is one definition of a circle of support:
“A group of people who are intentionally invited to come together in friendship and support of a person with a disability, for the purposes of protecting their interests into the future. Not with the expectation that this group might have a responsibility of “caring for” the person BUT with the expectation that if asked, people might be pleased to make time and agree to join the circle to “look out” for the person.” – The Circles Initiative, SA.
It can be hard to know who you should invite to be part of the circle. Generally you would want people who fit with your value system and share your vision and your hopes for a good life for the person with disability.
Though at times it can be good for us to be with others who have different ideas as these challenge our way of thinking and can open us up to other concepts and possibilities.
It is of course an unpaid role so all people present will have genuine care and concern for the focus person. You could start by looking at what relationships already exist in your and the focus person’s lives, and then move on to “what other potential relationships are there that we could be tapping into?”
It may help to assign roles to members of the circle e.g. minute taker, fundraiser or food organiser. Or it may work in a very relaxed casual way, similar to a group of friends just chatting which is exactly what some people’s support circles are.
As with all coming together of people around disability there can be a temptation to discuss mostly the problems and negative experiences of daily living. Sharing hardships and venting can be important for emotional support and wellbeing. However, if those negatives can be viewed as challenges and you keep the focus on positivity, the members of the circle will look forward to coming together more and the ideas and suggestions that arise will be more positive as well.
Here is a short interview with Social Worker Monique Downie about her involvement in circles of support for others.
When did you first join a circle of support for someone?
“I first joined a circle of support for someone about 5 years ago.”
“I joined because I wanted to contribute towards the person’s life with ideas. I also wanted to be more involved and it gave me an opportunity to see the family/person regularly and helped me to develop a stronger relationship with the person.”
Obviously the main beneficiary of a support circle is the person who requires the support, but do you and the other circle members get anything out of it?
“Being a part of a circle of support is so rewarding. I have met many new friends through both of the circles that I am a part of. I’ve also been a part of many activities that I normally wouldn’t get the opportunity to participate in. I was really very blessed and lucky to be invited into the families’ lives, it takes courage to start a circle of support and I’m very appreciative to have been invited.”
What kind of people should be in someone’s support circle?
“Anyone who is interested in contributing positively towards other people’s lives should join a circle.”
Can you think of any examples of how a support circle you’ve been involved in, has really made a difference to someone’s life?
“Support circles are a great place to pool collective knowledge and resources. Having conversations about the person’s life often stimulates new ideas and prompts people to recognise resources that they have access to. This means that those resources can be used to support the person or perhaps a new opportunity can be created for the person through the members’ contacts. One person gained a work opportunity through their circle and another person was able to move into his own home. It was due to the time and effort of their circles that these activities were able to happen successfully. In my experience circles contribute massively to life planning and clarity around plans. They are also really useful to help troubleshoot problems and evaluate the value of the current activities the person is participating in. It also gives families an opportunity to debate issues that they normally wouldn’t discuss openly. It can help to strengthen the families’ connectedness with each other.”
It may be that a ‘formal’ circle is not what is wanted or needed, and a chat or friendship group may meet your needs. Here, a mother of one of the families in the Mamre community describes what having a friendship group means to them.
The Importance of Friends
“I’d like to share one of the most valuable and treasured things I have been lucky enough to be a part of since learning of my eldest child’s Autism diagnosis, some 11 years ago. I’m part of a group of mums all with children with special needs, varying in ages and diagnosis. Some families have more than one child with special needs, as ours does. Our group meets once a month and goes out to a local restaurant. It’s the same time each month, so everyone knows when it is and can plan babysitting and carpooling. Here we can talk freely about how we are, what’s happening with our children, successes, failures, school issues, partners or just listen. It’s wonderful to talk to someone who doesn’t judge you but supports you and totally understands the highs and lows in your life. This also takes the pressure off your partner and family who sometimes you don’t want to burden or think you are always complaining or talking about your kids.
Our group has been going for over 10 years and has grown from the initial 5 ladies who started it. All of the originals except one attend most months and we now go away once a year for the weekend together. I cannot stress enough the benefits of a regular get together and making the effort to catch up with likeminded people. I know for me, it has helped enormously when things are going well or not so well. I believe that I have met some incredible, passionate and dedicated people along the way that I wouldn’t have met if my children didn’t have special needs. I cherish these friendships. I am also so very thankful that our family is connected with Mamre and receives such wonderful support from them. It’s not always a smooth journey but there are still good people out there if you seek them.” – Andrea
This is a wonderful example of how being part of a group or circle can help with the stresses and isolation that living with disability can sometimes lead to.
So; if you feel that maybe starting a circle of support, or a group may benefit you or your family, you could maybe start by asking yourself the following questions.
Rob Sayers (firstname.lastname@example.org)