Some types of people and organisations commonly come up when we discuss disability. My understanding of them flows from how I think about disability. There are other ways, which you are free to raise and discuss below. And let me know if I have missed anything.
To me, the main stakeholder types are:
- Disabled people.
- Parents and families of disabled people.
- Disability change movements.
- Organisations of disabled people.
- Organisations who provide services for disabled people or families.
- Agencies whose purpose relates to disability.
Disabled people are those of us who have impairments and experience disability.
However, if we understand disability as the interaction of personal impairment and social process then the experience of disability comes in different forms and intensity – and is not actually restricted to disabled people. Attempts to reassert primacy have resulted in phrases like ‘people living with disability’ and ‘people with direct experience of disability’. Having impairments and experiencing disability are both required to be a disabled person. If there is a simpler word for that, I’m all ears.
Parents and families of disabled people may experience the social process of disability quite strongly at times. However, there is a difference between being a disabled person and loving or living with one. Extra reliance on family for support can amplify the usual struggles most parents face letting their children take risks and live their own lives.
Disabled people and families are often spoken of together as the ‘disabled community‘. However, there are significant power differences and speaking on behalf of disabled family members has long been a source of tension.
Disability change movements are active groupings of people and organisations who are motivated by improving the world for disabled people and families, though often only in particular aspects or for specific subgroups of people. These are mostly powered by disabled people, families and organisations.
Coordination between movements, resources, skills and strategic planning for sustained action are challenges. Disabled people and our organisations have much to learn from other social change movements.
Organisations of disabled people (‘DPOs’) are intended to represent the interests of disabled people, and to be comprised of them. The United Nations disability rights convention recognises DPOs as ‘civil society’ organisations with a special representative role. The main national DPOs in New Zealand serve distinct impairment-based populations and work together as the ‘Convention Coalition’ that has an official role in monitoring implementation on the Convention. DPOs include the Disabled Peoples Association (DPA), People First, the Deaf Association, and the Association of Blind Citizens (ABC).
Service providers deliver a variety of services focused on the immediate needs of disabled people and/or families, often focused on particular impairments. These are the mostly non-profit organisations familiar to the public over decades, such as CCS, IHC, the Foundation of the Blind and the National Foundation for the Deaf. Their role has often evolved to blur advocacy with service provision – another common source of tension. Some government departments are also significant contractors of or providers of services, as are District Health Boards.
Agencies regulate and support the workings of what is often called the ‘disability sector’*, but do not provide support services as such. Both central and local government contributes to this role.
* The disability sector is frequently mis-conceptualised to contain not only the service providers, DPOs and agencies, but also disabled people and families. This mashes together a variety of perspectives and needs and does not recognise the different power, resources and mandates of stakeholders.
It also defines disabled people mainly as users of disability services, which is untrue for about half of us. Even then, this error reflects a curiously dependent and institutionalised understanding of our places as citizens and consumers.
By comparison, when someone says ‘education sector’ we do not usually think of students and their families but only of the people and organisations who work to deliver them an education. Discussing the ‘retail sector’ does not normally include its customers.
This post is also at Public Address’s Access blog.