Independent Living has been an important component in the liberation of disabled people for the last 40 years but I have a feeling that many disabled people and others are confused about what independent living is. Currently, activists as a whole seem to be fighting for independent living in terms of additional legislation while defending independent living in terms of the closure of the Independent Living Fund.
This duality is confusing and I think it shows that independent living has so far been a difficult concept to define and so I wish to use this article to propose an initial definition of what I feel it means, and why I feel independent living is something we already have if people really want it and is willing to enter the mind set required.
For me, independent living is not about where you live or how much personal assistance you receive, although they are factors, but it is an attitude to life and living that enables people to embrace their personal rights and take on their responsibilities as interdependent citizens of society. It is about being empowered to make decisions and be able to take the related consequences.
I believe independent living is more importantly about having the ability to overcome the immediate barriers you are facing by problem solving and adapting to the situation as well as adapting the situation itself. While people currently attribute employing personal assistants and living in your home as markers of successful independent living, they are only a social construction based on the resources currently available and social norms.
An example of how independent living is more of an attitude than anything else is my observation of the disabled people I have met in Hungary throughout the 1990s. I was interested to see a lot more disabled people were using crutches as their main method of outdoor mobility, where in the UK they would have been more likely to be using a wheelchair or now a mobility scooter. The reason was simply that Hungary, including Budapest, was far less accessible than the UK at that time and so to retain their independence, many disabled people naturally found crutches a solution to this. I would guess things may now have changed with improved access and wheelchairs may now be more common.
Residential Care is regarded as the nemesis of independent living but while residential care is not for everyone, some people they prefer this type of housing and personal support. If we accept that standards in residential care has improved dramatically from the time when independent living was born, being in residential care does not necessary mean people can not experience independent living by adapting their environment to how they want to live.
We can empower people not to adopt the passive role of being looked after and actually become partners in the support provided to them. Whether people are in residential care, use a care agency or employ personal assistants, they can use charm and other techniques to manage their support as much as possible within the limitations of that solution. While employing personal assistants is portrayed as the dream solution, it can have as many difficulties and limitations as any other solution. It is only positive thinking and good problem solving that enables us to stay in control and experience independent living.
I am therefore suggesting that independent living is an attitude more than anything else, and that it is now up to policymakers to create programs of support that grows and nurtures this to enable and empower more disabled people and others to experience true independent living in the way they wish to live. It is also time for many disabled activists to stop fighting for independent living, often as a defence mechanism for their unresolved issues, and allow themselves to experience it for themselves.