Natural Routes to a Good Life in Community
The word community covers a lot of ground. Here it means physical places and the person-to-person action that happens there. Places where you could bump into something new and exciting. People you could ask for help to set up your new smart phone.
Communities and surrounding areas include community centres, offices, art studios, farms and ranches, shops, hiking trails, churches, synagogues and mosques, gyms, bars, warehouses, malls, cafes, college classrooms, meeting rooms where service clubs gather, museums, factories, rinks, playing fields and many more places that each community creates as its members pursue their interests.
We know far too little about the long term effects of social media based connections to be satisfied with online memberships and social media friendships as primary human relationships.
Experienced Alberta families think about community as a place that offers multiple pathways through life. People choose pathways that match their interests and resources and offer the possibility of meaning, enjoyment and challenge. Each of the eight broad pathways identified above contains many more. Work takes many forms; there are different kinds of places to live; there is a variety of possible constellations of family and friends. People express their creativity through different forms of craft, music, dance, art and drama. People worship in different ways and places, support different political parties and join different community groups. Different sports engage people and different teams generate enthusiasm. Difference creates community. Healthy communities value and respect difference.
Communities offer so many possible combinations of pathways that no two people need to follow the same route through life. At different life stages some people invest a lot in work life; others put most energy into home life, family and friends. Some invest free time to perfect their game or craft; others to support the work of a service club. Each community pathway defines roles and activities and offers opportunities for belonging, friendship, expression of identity and personal development. Being on a community pathway doesn’t guarantee success or keep away loss and suffering. It does offer chances to learn from failures and develop resilience and, most important, offers a life of meaning and possibility.
Most people without disabilities don’t think too much about pathways; they are simply there to choose among. Searching for a good job or preparing for a better job is natural. Saving to buy a home is ordinary for people with material assets, as is helping children get a head start on home purchase. Accumulating the skills and gear to pursue a sport or creative interest is typical. It’s commonplace to choose to apprentice in a trade, or attend post-secondary education, or sign up for an adult ed class. Inclusion Alberta calls these normative pathways because they are familiar, ordinary, natural routes to a good life in community.
Community is imperfect. Geography and resources advantage some areas over others. Economic cycles follow prosperity with deprivation. Inequalities of power and money and the weight of history influence the distribution of opportunities, as do individual and family fallibilities. Some families face significant disadvantage in their search to find and stay on a rich and meaningful life path. A healthy community keeps struggling to find effective ways to increase opportunities for people and families who experience poverty of money, meaning or friends.
Granting our imperfections, from prehistory humans have relied on community to produce pathways to development and meaning. With good support and safeguards these normative pathways offer the best chances for people with disabilities to have a good life.
Families need to explore normative pathways on purpose because it’s too easy for people with developmental disabilities to slip onto separate paths that offer far less opportunity to develop and contribute.
The exclusion pathway exiles people from community life by design. The Alberta Government’s first investment in adults then labeled mentally deficient, in 1923, built an institution based on the eugenic myth that society must be protected from people with learning differences by a medically supervised program of enforced segregation and involuntary sterilization. Overcrowding and understaffing soon allowed no more than custodial supervision for people who were more impaired. Those who were more able did unpaid labor for the institution, including care for those with greater needs. Exposes of dehumanizing institutional conditions across North America stimulated a 1970s–80s program to build smaller, better staffed facilities that continue to group people on the basis of disability at a professionally controlled distance from family and community life.
Only a small proportion of families ever directly experienced institutionalization, though lack of future alternatives still causes sleepless nights for many. For decades most families experienced their situation as a private trouble and lovingly got on with making a life together for as long as they could. Sometimes families were helped by others who may have seen themselves sharing a burden or responding charitably to a pitiful situation. Other times they met rejection by those who saw danger or a stimulus for shaming or disgust. Exclusion happened at the public school door and sometimes even in their house of worship. As adults, some family members found a place at the edge of community life; others passed their lives completely within the family orbit.
In the 1950’s, a growing number of parents came to see their situation as a public issue and organized associations. They resisted devaluation and rejection. Step by step, over decades, they advanced recognition of public responsibility for people with developmental disabilities in the Legislature and the Courts. In their home communities parents set up and often staffed preschools, schools and day programs where people learned things that proved professional diagnosticians wrong in their pessimistic predictions. They built sheltered workshops that demonstrated productivity and group homes intended to offer places of safety and happiness when parents were unable to. They organized special needs sports, arts and leisure activities. These efforts constructed an alternative to exclusion that established a separate pathway, an alternative to community pathways defined by developmental disability. People showed up in community as members of a group of developmentally disabled clients of special services.
In the 1980’s small groups of families across Canada came together locally to explore the full spectrum of community pathways, one person at a time. They discovered how to support their family member on normative pathways to a lifetime of learning, civic life, work and play. Meaningful differences in learning, movement and communication became challenges to address in community settings rather than reasons to withdraw into special places.
Today, community pathways are better charted and initiatives that support long term success have emerged. More and more families have witnessed events that they had not imagined possible: applauding their son as he rolls across the stage at convocation after being fully included in university; watching an iPhone video of their daughter’s coworkers celebrating her years of contribution to a workplace she loves; gathering boxes to move their son’s prized possessions into his own home; giving away the bride. It still takes courage and willingness to learn each next step through action. The potential for rejection based on prejudice still shadows and intensifies the difficulties, failures, conflicts and downturns that accompany any life. But positive possibilities continue to multiply.
Robin Acton: We use paid supports to enable her to do really typical things in community.
Families exploring community pathways have made important discoveries.
- Their family member develops in ways they could not predict. It’s easy to underestimate the power of engagement in ordinary community experiences. Vision and new possibilities come into focus as one thing leads to another along community pathways.
- Strong relationships with a growing variety of others –across generations– who know, care about and believe in a person are essential to promote and safeguard a person’s wellbeing.
- Even failures can contribute to development. Like many others, some people try a variety of places and pathways as they discover what holds interest and meaning for them.
- Continued, active involvement with Inclusion Alberta provides vital family-to-family relationships, knowledge exchange, advice, support and advocacy.
- Opportunities exist in considerable variety when people overcome an assumption of scarcity and look at community with a person’s interests and abilities in mind. People fall into stereotyped jobs when curiosity and imagination are missing. A person interested in health care might end up slotted into laundry work by those who fail to notice the dozens of other roles that make a hospital function.
- It’s desirable to be active on more than one pathway. Good experiences in sports can lead to social ties that produce good job leads or spot a good, affordable place to live. Meeting expectations at work can develop skills that contribute to civic life. Fellow artists can refer new staff who have a gift for offering support that matches a person’s interests.
- Rejection remains a real possibility, but more work places and associations are prepared to welcome a person with a real interest in joining them than fear might lead families to expect. It’s easy to underestimate the positive effect that a person can have on other people they engage with. As they connect and contribute, people can move from behind disability stereotypes that fuel demeaning treatment and establish respectful relationships and, sometimes lasting, friendships.
- Over time people change, families change, places change, communities change, policies change. Desire to control the future by placement in an ideal stable, forever secure disability services remains a seductive illusion. Legal matters of estate and supportive decision making can and should be thoughtfully arranged. For the rest of life’s ups and downs, the resilience that grows with ties and connections made along community pathways forms the best possibility of moving through inevitable losses, repairing breakdowns and discovering new opportunities.
The power of normative pathways grows with the extent to which a person is immersed in the experiences those pathways offer as people travel them over years of life time.