All of us have informal personal networks – people we count on. People who help us out. They are our friends, our colleagues, our acquaintances, and our relatives. Unfortunately, many individuals with a disability don’t experience the support provided by relationships. In many cases people with a disability need assistance to recruit and maintain a network of friends and supporters. Here & Now supports people with developmental disabilities to have opportunities to make friends via personal network, group network, or buddy clubs.
“We are interdependent not independent beings” from Safe and Secure
A personal network is a group of people who know and care about your loved one around in good times and in bad. Most importantly, a network of family and friends is there to have fun with and to grieve with. A network can also help your loved one make decisions, big or small, in their life. The real strength of these networks comes not just in their connection to the person in the center but in their connections with each other. It is like a spider’s web. Here & Now hires a community connector who works to create and nurture its networks.
A group network is a group of typical people and people with divers-abilities. It has two to 5 people with divers-abilities while the personal network is for one person. This model is good for a religious group such as church. Here & Now hires a coordinator who works to plan fun activities for the group regularly.
Here & Now supports ‘A Buddy Club’ where people of all abilities get together to do different and fun things. The Club aims to build a more inclusive community with affordable and accessible events while having fun. These buddies have been on countless adventures together, such as watching a movie, bowling, cooking, pizza parties, pub nights, climbing, riding a bicycle, just to name a few. Here & Now hires a facilitator who organizes activities and manages volunteers for the buddy clubs.
The active support and participation of family members are indispensable for these networks to be developed and maintained. Families know well the importance of friends but they are reluctant to approach other for help with challenges as follows:
Challenges That Families Face
There are three challenges that families face: asking, opening, believing.
Asking is hard. There is always the possibility of refusal. Yet reaching out and asking people to join us for coffee, to go to a show together, is integral to developing and deepening our relationships. We worry that others will feel obliged – or worse – that they might be saying yes because they feel sorry for us or for our relative. This worry speaks to how deeply many of us have been hurt by negative cultural stereotypes about disability. We need to remind ourselves of the beauty and richness our family member with a disability has added to our lives and to the lives of those around them.
Opening or sharing our stories and worries means discussing intensely personal matters with others. This may be awkward. We, however, may need to contact people who have never demonstrated any interest in our relative. In order for others to come into our lives, there needs to be a place for and time to spend with friends. For many people with disabilities, much of their lives may be programmed. We may need to give up a program or alter schedules to create the space to allow others to engage with our relative.
Of the three challenges, this may be the greatest. We remember the absence of invitations to birthday parties or sleepovers. We hear someone say “why do their parents let their sons or daughters with disabilities bother others at school?”. We notice someone staring in the supermarket or we receive a look of pity from a passer-by. Our overwhelming desire is to protect, and we cannot find it in ourselves to truly believe there is a caring community of people available to befriend our loved one without getting paid. This lack of belief affects our ability to be open to others, and to trust in their integrity. But there are hundreds of friendships that have developed within Personal Networks, as shown at PLAN Canada for the last 20 years.
In spite of the negative view of an uncaring society profiled regularly in the media, people do reach out to each other. But people are genuinely hospitable and eager to become part of our relative’s life. Often they just need to be asked. Our challenge as parents and families is to not let our fears dominate the opportunities for friendship. The keys to creating these connections are first, our willingness to let them happen and second, our effort to make them happen. Nothing happens without doing something!
Network Members
Personal networks include anyone who cares for and expresses an interest in the person with a disability. They may include siblings, extended family members, friends, neighbors, church members, co-workers, employers and former care givers, etc. Friendships are not one-sided. They are reciprocal, a two-way exchange. They are not paid visitors. They are not volunteers. They are not one-to-one workers. Good friends support us through good times and bad, when we are on our best behavior, and when we are not.
First, we find out who is currently in relationship with the family member for whom a network is to be established. Then, we look to the immediate and extended family as well as people who have been involved in the past. We look for people who may have similar interests to your relative – people who want to help your relative overcome challenges, realize goals, and follow dreams.
What network members do varies from person to person. It may be something as regular as; “I will call you everyday” to “I will invite you for dinner once a month.” Some may give practical assistance with housing, employment, and recreation. Others may develop closer ties to neighbors and the community. Here are some other examples that network members do:
- Monitor the formal programs and services that our relatives receive
- Become effective advocates
- Serve as executors and trustees or as advisors
- Act as supportive decision makers and members of Representative Agreements
- Respond promptly and effectively to crisis
- Solve problems and handle the unexpected
- Carry out the wishes of parents
The people who participate in Personal Networks are not paid monetarily. Rather their involvement in the network is based on caring, friendship, and love for the person with a disability. People participate in a network because they get something out of it. The payment network members receive includes pleasure, joy, friendship, and the opportunity to share their interests with another. There are many people participating in networks that they receive more than they contribute.