Monday was no ordinary day. At 3 o’clock I delivered the eulogy at my mother’s funeral. She died of old age though she really died of dementia and Alzheimer’s disease. The care home had been successful at keeping coronavirus at bay but had done so by keeping all the relatives away. Fortunately on February 13th I did get to see her on her deathbed and hold her hand through a plastic glove. I mashed my speech but I did manage to get my thoughts out without tears. I spoke of her life journey. In the first phase she achieved independence: qualifications, her first job, becoming my father’s fiancé, learning to drive, obtaining a mortgage. In the middle phase she achieved interdependency: she had three sons. In the third phase she achieved co-dependency with us her sons. From 0 to 16 she had cared for us and from 70 to 86 we cared for her. I am sure it is not an ambition she would have wanted. I am sure like most people she died thinking of her interdependence even though she had lost the ability to tell me or anyone else.
Mum did knew a lot on the subject, she herself had been born in Rochdale, the birthplace of the cooperative movement. She took every visitor to the Toad Lane museum, where the Rochdale pioneers began the first cooperative.
I too have always felt the need to be a Rochdale pioneer. I have founded more than a dozen peace, civic and environmental groups and been in networks with hundreds of others. I also treasure interdependence, so much so, that I wonder if we emphasise independent living too much and interdependent living not enough.
Interdependence brings news, information, acquaintances, neighbours, friends and all the opportunities that flow from that. Just being in the street in the presence of someone who recognises you offers sharing of the time and space, the expectation you are having the same experience and affirmation of who you are. Small wonder that one in seven journeys of older people is in the category, just going for a walk. The virus is a threat because it likes the same things we do; social space, the frisson of other people’s company and chance encounters. There is a huge pent up hunger to have these experiences again.
The national disability strategy currently in development by the Cabinet Office will include the themes of transport and housing but what will it have to offer disabled people beyond the elements of bricks and mortar or the concrete and tyres (important though these are)? Here’s what I think. In a word community.
Community is a word that has gone through several interpretations in just the last thirty years. David Page coined balanced communities where the different demographics resided in certain proportions to maintain a natural harmony. The Rio declaration on sustainability heralded a focus on sustainable communities whose environmental load was within the carrying capacity of the earth. Richard Douthwaite’s book “Short Circuit” provided analysis and practice that helped us to understand what a sustainable community is. The connected communities sought to link the different demographics especially the marginalised through the use of technology. Gary Alexander in “Earth Connected” provides a vital read here. More recently cohesive communities have put an emphasis on decentralised decision making and optimising the insights of Robert Putnam on social capital. Resilient communities have been characterised by Kevin Carsen as having low overheads. There is so much to draw on.
It can be argued that disabled people have been historically poorly served by the state and by the market as evidenced by their high levels of poverty and their low levels of employment so could there be a communitarian route to their inclusion in society?
I think the answer is yes but it will require disabled people and those with a long-term health condition to embrace the progressive elements in all the interpretations of community sketched above and to form self-organising groups that bring new resources and opportunities into play.
The Disability Resilience Network is committed to disabled people not just being a member of communities but of a community too. Naturally we wish to see disabled people’s organisation strengthened because that way we can enhance bonding social capital but we also want to see disabled people taking on leadership roles in mainstream civic groups and in that way we will strengthen bridging social capital. Our contribution will be to foster leadership by disabled people in mainstream civic groups and at a neighbourhood level.
We are in principle resistant to the factors that take disabled people out of our neighbourhoods, the segregated special schools and the retirement homes. Disabled people need to be present at all ages to be able to make their contributions to society. There is no inclusion without them. The Government has four grand challenges and one of these is to give everyone in the country an additional five years of independent living. This commitment should be referenced in the forthcoming national disability strategy and explicitly include disabled people being supported to enjoy these five years within their own neighbourhoods.
The Government promotes civic leadership for example through its support of volunteering and we would also wish to see these volunteering programmes monitored for their uptake by disabled people. Where these programmes are found wanting we would wish to see targeted approaches to disabled people and their representative organisations to redress the imbalance. We will lobby for this.
However it is as argued already the actions we take as the disability movement that will make the biggest difference to our welfare. There are over twelve millions of us, we have people of all talents and capabilities within our ranks, and we are our best resource. Collectively we know many of the answers to our challenges and what it takes to find the rest. For too long we have been divided by our impairments, researched for our differences and constrained by a model of disability that says that to overcome barriers we must persuade someone else that they need to be removed. We need more defiance. The sort that says “Yes we will.” The sort that says “Now is the time”.
So let’s take a moment to think of what we have in common and how we might become more defiant. Most of us acquired our disability – 95% were not born disabled. We had an equilibrium that was disrupted, many of us had a shock injury or loss of capability or diagnosis, most of us had to find coping or adaptation techniques, we all uncovered or made use of our inner resilience. Some of us even used that resilience to become stronger in some area of our lives than we were before. Unlike school where you learn and are then tested on your learning we all are tested and then we get to learn. Most of us are in socio-economic groups C, D and E so we cannot compensate ourselves by buying our way out of our challenges we have to become more resourceful instead. We each have the W.I.T. – Whatever It Takes. Now multiply that by 12.3 million.
Mum would approve.
The Disability Resilience Network will develop a presence at a neighbourhood level. Could it be you?