I grew up both understanding and benefiting from the concept known as 'independent living' although as we roll further into the 21st Century, I wonder if the concept has lost its way and what is its future? Within an different era, where so many disabled people were segregated in various types of residential care settings, independent living was simply about living in the community with the necessary support required, which was a very big deal at that time.
But living in the community is only the very first step and the independent living movement realised it should also be about choice and control, which is a great ideology although it must be within a context of responsibilities and consequences, otherwise it becomes meaningless. And I feel where this is we are right now. While the independent living movement has focuses what the rights of disabled people and what they need or perhaps want to have a good quality of life, I feel they have so far ignored the responsibilities that go with being a good citizen.
The main problem in terms of independent living for the majority of disabled people is that it requires some level of financial and/or other contribution from the state. This means that while it may appear correct to focus on someone's rights, if the state does not feel it is getting something from their investment they will find it hard to justify it, especially since we do live in a world of finite resources. It is therefore in the best interests of the independent living movement to reframe the concept to provide a greater focus on what disabled people living 'independently' can give back to the state.
I do not see this as necessary being about employment, paid or otherwise, but a willingness to make the effort to contribute to society, even if the result is very small. In this context, I see independent living as a continuous process of improved social inclusion, a type of social model version of rehabilitation. If we take for example the starting point of someone who experienced a spinal injury from a road traffic accident, we can see an 'independent living pathway' from the ambulance, to the acute hospital service, to the spinal rehab unit, to moving into an adapted home and employing PAs, to employment support and then eventually finding new paid employment. Another pathway could be for a disabled child and all the support activities they require to be a contributing member of society throughout their life.
For these pathways to work, the barriers between health, social care, housing, employment, education, transport and other services need to be broken down as we would need multi-disciplinary teams who can duly assess and support people as and when they need it, possibly with a mixture of personalised support payments, to fund care, support and other costs, and specific services as required. This would be the biggest shift in the way welfare, health services and social care would be delivered since the start of the welfare state. The system must be very responsive, and so delivered locally, possibly through local government, but also be fair and just with national standards and guidelines.
More importantly the focus will move away from label based eligibility to a flexible system of meeting people's outcomes, in line with their responsibilities as citizens, taking into account their health, care, social, and as importantly emotional needs. While health and care, that can be deemed as basic, may be met as a basic right regardless of circumstances, social and emotional needs will be dependent on the amount of effort someone is willing to put in to be a good citizens such as employment, education, raising a family, involvement in political activities, or simply being compliant with a treatment plan even if that means just resting.
I feel this new way of independent living can only work if there is a theoretical believe from professionals and society that all disabled people have human potential and should have the ultimate goal of paid employment or raising a family if they wish to be considered a good citizen, in the same way every non-disabled person is regarded, even if the reality of their potential, within the current state of technology and the environment, is very different.
Independent living has succeeded to get many disabled people a quality of life equal to their peers, but I believe it is time for the next step if we are truly committed as a society to the liberation of disabled people, particularly those with high support needs, as equal citizens with the same rights and responsibilities as anyone else.