By Al Etmanski
In previous posts I have highlighted that social innovation is not an incremental change to the status quo but a substantive, disruptive one. Social innovations improve our ability (whether as individuals, families, networks, communities) to define and solve our challenges, rather than looking for outside help. Important by-products of social innovation should include greater resilience, less vulnerability, more choice and control, more engagement as citizens, more social and economic justice. It shifts the conversation, rallies supporters and creates opportunities for even more innovation.
Here are ten innovations in the world of disability that have caused such a sea change. Some continue; some led to other innovations. Some were slow moving. Some happened immediately. All were and are transformative.
The Family Movement – advocates for the economic and social rights of family members with a disability. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination. In the late 1940s and early 1950s families spontaneously across Canada, Australia, US, England, France, Scandinavia and New Zealand, began asserting a different vision, a different lifestyle and a different future for their sons and daughters with developmental disabilities. They defied conventional wisdom that their sons and daughters should be institutionalized. These isolated, independent groups eventually coalesced into the first wave of the ‘parent/family movement.’
L’Arche – Jean Vanier‘s personal commitment to live in community with people who have intellectual disabilities broke down the major barrier between helper and helpee and replaced it with reciprocity, mutuality of relationships and recognition of our common humanity. Beginning in 1964, there are now 131 L’Arche communities in 34 countries.
UN Declaration on the Rights of Mentally Retarded Persons – Passed in 1971, (thus the outdated language )it was the forerunner of subsequent Charters on the Rights of Children; Women, Convention against Torture etc. It paved the way for the more comprehensive Convention on the Rights of Persons With Disabilities which came into force in 2008.
Independent Living Movement – founded by Ed Roberts and other Berkley activists in the 1970’s. Their philosophy led them to remove the shackles of a medical view of disability, to be replaced by the expectation everyone should lead productive, meaningful lives as integrated and valued members of their communities. In yet another confirmation of the power of passionate amateurs Roberts who had been told he was unable to operate a motorized wheelchair, fell in love. Being pushed by someone else was suddenly someone too many. In a day and a half he learned to navigate himself and in his words, “She jumped on my lap and we rode off into the sunset.”
Normalization Principle – Originating in Sweden and Denmark, normalization means making available to all persons with disabilities, patterns of life and conditions of everyday living which are as close as possible to or indeed the same as the regular circumstances and ways of life of society. (Bengt Nirje). Normalization fueled a generation of activists starting in the 70’s, including yours truly, inspiring institutional closures and the elimination of segregated schools and services. In North America,Wolf Wolfensberger contributed to the evolution and spread of normalization philosophy which is often called social role valorization.
Individualized Funding – individualized funding means that funds no longer go from the government funder to service providers, but instead go directly to the individual. Individualized funding gives control of the funds to the person so they can purchase the services they require, sometimes with the assistance of a broker or other agent. The intention is that the person will determine the services needed and their needs will shape the service system. (source – Brian Salisbury) It is hard to pin exactly where this started but a major stronghold was in Vancouver at the Community Living Society in the late 1970’s. Their work inspired a range of adaptations in other jurisdictions which ironically have become stronger and more widespread. This approach has flourished in England where the choice of direct payments is available to all those who are receiving social services, seniors, people on income assistance and people with disabilities..
People First – People First are independent groups run by people who no longer want to be known by their label or diagnosis but as people first. Label jars not people, is their motto. They support each other to take charge of their lives, to stop things from being done to them and to fight discrimination. This has led to the growth of self advocacy (i.e. folks speaking for themselves) and the rallying cry – nothing about us without us. Today the self advocacy movement is international – 43 countries with an estimated 17,000 plus members.
Circle of Friends, Personal Networks: A caring supportive network of friends and families is the cornerstone of a good life. Robert Perske accelerated interest in the ancient power of friendship with his book Circle of Friends. The Joshua Committee of Judith Snow, Jack Pearpoint and Marsha Forest inspired most of us. Early pioneers wereGeorge Ducharme and Pat Beeman. PLAN co-founder Vickie Cammack created a model to sustain personal networks, ensuring their longevity, independent of grants and anchored in the control and value of families.
Inclusion – On August 25 1989 at Frontier College in Toronto a group of disability leaders coined a new concept – inclusion – to counteract the watering down of previous concepts like mainstreaming and integration. The context was the struggle of families everywhere to have their children (who happened to have a disability) included in schools and life. They deliberately adopted this new terminology, to change the conversation. They envisioned a world where everyone would be a full and contributing member of society i.e. ‘all means all.” They chose the word ‘inclusion’ focusing on the importance of, “With not just in.” (thanks to Jack Pearpoint for this background)
Lists are always personal and limited by our unique perspective and experience. I’m curious what you would add to this incomplete list.
This is a repost from 2011. View the original here.