What does inclusion look like in the community? How do I help my daughter with CP to engage with others and be socially included if she can’t hold her head up and can’t talk? I know that exclusion from society is bad eg group homes, special programs etc but I couldn’t quite explain exactly why. On the other hand, specialised programs are great because it meets the person with a disability where they’re at, gives them and their families the support they need and we’ve been personally been enormously blessed by them. These were the questions that were buzzing around the back of my mind when I heard that Mamre had invited Al Condeluci to talk about inclusion.
Updated: Full Video: https://www.youtube.com/watch?v=gd8OPy2cSxo
Here’s a “summary” (a little longer than intended) from my notes. Note: I only came half way through the session (the doorbell you hear half way through was me).
The Good Life
When we look at what it means to have ‘the good life’ every person regardless of their ability, race, gender would say that it is to have a
- job (means to earn an income and contribute to society),
- a house /place to live/to call their own; and
- relationships (friends and family).
When it comes to supporting people with a disability it’s easy to provide jobs and housing with funding and support. However, to assist them to make friends and be engaged in a community is more challenging.
Historically people with disability have been devalued by society with their disability seen as a punishment from God or less than human. This has improved over the years with
– charities – to care for them
– medical institutions – to fix them solely focusing on their medical needs.
– social institutionalisation – to watch over them and provide services that cater for their disability but not fully include them in society. This was in the form of group homes, supported apartments, special education, sheltered workshops, work enclaves, separate recreation and separated transportation.
These approaches have their merits in meeting people’s needs to a degree, what was missing from was community (beyond the paid agency/ support) – having friends, social opportunities, people who call and places to go.
“If you belong to no community and decide to join one, you cut your risk of dying in half over the next year.” – Robert Putnam
Having relationships reduces stress and improves the immune system to help ward off bacteria and viruses. This has shown to be true in real life examples such as the Roseto community, who were studied by medical professions to find out why everyone lived longer than the norm despite poor health, eating and exercise habits. They ruled out all the factors and only one they could conclude was that they all belonged to the same Italian community for generations. It was only when the younger generations started to move away for work that their lifespan came down to normal. In the same vein, Hispanic communities are also found to live longer despite harder jobs, lack of exercise. All of this could be traced back to being part of a strong tight-knit community.
Al Condeulci and Rachel Drew (Mamre) also shared their experiences on how this might be created, having just come back from a trip to New Zealand to visit an intentional community called Earth Song. This community of 32 likeminded families built a housing estate with sustainable living and community in mind. There is a community center where the families take it in turns to host a dinner twice a week. Cars are parked on the perimeter to promote walking.
On the flip side when there isn’t community the life expectancy is less and for a person with a disability, it is 15 years sooner. In UK doctors are treating loneliness as an illness. During hurricane Katrina a few thousand died, however, most was not from the direct consequences of the flood, it was because no one knew they were trapped, didn’t know to come and so no one found them.
So how do we help people build communities when there are challenges?
The Power of Social Capital
There are two ways of looking at change:
- Micro change – changing an individual’s circumstances – this is about changing the focus from deficits, labels, the differences, to ‘fix the problem’ and instead focusing on what we might have similar with the person to start building bridges at the personal level.
- Macro – community – is made of rules and relationships. There are social norms in each community and rules of engagement. Macro change attempts to change social attitudes through formal ways (laws) or informal ways, through relationships. And how do we do this? By starting the conversation.
What was interesting was when community does not happen organically we create systems to generate a marginal reality. So for people with a disability when they cannot participate and engage in community, we create artificial community’s such as group homes, sheltered workshops, special programs all of which cater to their specific needs but the effect is that they are excluded from society.
The community model for macro change see the problem is not the person, but the assumptions. Instead of focusing on ‘what’s wrong’ with the person, it is about shifting the focus to similarities and shared interests. By doing so bridges can be built, friendships forged and builds social capital – essentially it means that there are people that care about the person with a disability who will be there for them when things go wrong, not because they are paid but because they genuinely care about them as a person. This is fundamental to all human beings we all need to love and be loved.
“One of the biggest flaws in our approach to life is the Western belief that competition creates strong and healthy systems. But competition among individuals is not hte dominant way life works. It is always cooperation that increases over time in a living system. Life becomes stronger through systems of collaboration and partnering, not through competition. ” – Margaret Wheatly
We discussed the exclusion that occurs when there is competition. There is only ever one winner and each time the competition is repeated, the winner is called to somehow ‘defend’ their title or else they are perceived to not be a winner. This ignores the fact they have already won and the reality is that they should always be considered a ‘winner’. There is only one winner and that makes everyone else give up and opt out. We don’t see the best out of everyone when there is competition, infact it often brings out the worst particularly when winning becomes the sole focus at all costs. Often we perpetuate this notion by focusing on ‘who is winning’ rather than how we are playing the game. When it comes to life it is apparent that how we play is much more important than who has ‘won’. However, when we work together we bring the best of what we have to offer and leverage each other’s strengths in synergy to create something greater than what could be achieved individually.
“It’s not differences that divide us. It’s our judgments about each other that do.”
We discussed different ways that might isolate people from engaging in the community and found that it’s not simply other people’s attitudes and judgments they have made about a person, but also the person’s on ideas or personality.
For example, those on the autism spectrum often want to engage in social interactions, however, they don’t know how or can’t bring themselves to because they feel they may violate the social norms or have to be someone they’re not in order to fit in. It essentially boils down to the fact that we all want to socialise with whom we want to socialise with, when, where and how often we want it. We all want the choice to opt in or out and so shouldn’t people with a disability be given that same opportunity?
We first need to get past differences by
- More similarity
We then talked about different examples in the media where we have seen this done successfully – some examples were:
- Big Bang Theory – practical guide to making friends
- Community – ahbed – protrayed as eccentric but normal
- Speechless – quest to live a ‘normal’ teenage life despite having a carer to assist with communication.
Firstly a person needs to identify what community they want to be part of, visit with regularity, then find a way to contribute to the community. This can be done by:
- Look to (or help others) find their common passions (similarities)
- Look for places (communities) where these common passions are celebrated and try to visit with regularity.
- Find out what is important in how this community behaves (rituals, patterns)
- Look for (or become the Gatekeeper) to other community members.
So what is the role of the paid support worker? How can people with more severe disabilities hope to make friends and maintain them?
Gatekeepers are simply people that have the power to allow or prevent people from accessing and/or engaging in the community. So there can be good and bad gatekeepers. When used well, paid funded support workers can be used as a conduit for building social capital. This doesn’t mean getting a certain number of likes on facebook (someone mentioned that this was an actual goal on someone’s plan and used as an example of how the concept of social capital is easily misunderstood). Discussing the place of social media, I discovered it can be good to help strengthen new relationships – keep regular contact, provide information to find similarities, provide topics of conversation to help build bridges in person. However, it is not to be used as a replacement or an indicator of social capital.
Where to from here?
Let’s start the conversation. This is the best way to effect real social change, with one conversation at a time. There is a lot of new ideas to think through and I would be interested to hear more about how others have applied this in real life before. Here’s some further information that I will also be reading. Keen to also hear your thoughts of what you found helpful.
- Al Condeulci’s website has links to books and media
- Mamre.org.au – contains links to workshops held previously.
- The process of cultural shifting – this was included in the workshop handout
- Critical nature of social capital
Disclaimer: this is a summary of my view of the workshop given and represents my view of what was said. The full session of the Mamre session is now available on YouTube: https://www.youtube.com/watch?v=gd8OPy2cSxo