I often write against a generalized “happy happy” language that permeates certain aspects of disability discourse, particularly in the Down syndrome community. Our community pushes a kind of “life is great” mentality, driven especially by the abortion issue, and I strongly support drives to fight the stereotypes of horror and worthlessness. The joys in our life with Nico, my son, are intensified by the hard work and great challenges. The joys are many. But I also want to make sure we have room for challenges to be challenging, sorrow to be sad, for mourning, grief, stress, anxiety, and pain.
And then, having carved out discursive space for things to be hard, I try to make the turn back towards happy, the kind of real joy that you only know when you acknowledge its mirror.
In BBC magazine, Tom Shakespeare, a sociologist born with restrictive growth, writes about happiness and disability. He writes:
Have you ever thought to yourself: “I’d rather be dead than disabled?” It’s not an unusual reflection. Disability, in everyday thought, is associated with failure, with dependency and with not being able to do things. We feel sorry for disabled people, because we imagine it must be miserable to be disabled.
But in fact we’re wrong. It’s sometimes called the “disability paradox”. Surveys reveal people with disabilities consistently report a quality of life as good as, or sometimes even better than, that of non-disabled people.
This is based on data, some of which he links to, and you can follow the links. He then explores possible permutations of the data, criticisms of it, and offers his own story of progressive disability (an injury). Please read the whole piece.
Towards the end, he offers the following:
This highlights the importance of the environment in determining the happiness of disabled people. As in most areas of life, it’s structural factors that make the real difference. Participation, not impairment is key. Do access barriers stop you going to school with your friends? Do you have a job? Does society meet the extra costs of having an impairment through a welfare system which is fair and non-stigmatising? Do you face hostility and hate crime? Unfortunately, in most of these respects the situation for disabled people has been getting worse, not better, in recent years. According to the Centre for Welfare Reform, this government’s spending cuts have had a hugely disproportionate impact on the lives of disabled people in poverty.
Policy. Work. Money. School. Community. These are the factors that shape happiness. And they shape it for all of us.
And remember: Mere existence entails problems. Hamlet, listing reasons why death is to be preferred, highlights “the thousand natural shocks that flesh is heir to”. To be born is to be vulnerable, to fall prey to disease and suffering, and ultimately to die. Sometimes, the part of life that is difficult brings other benefits, such as a sense of perspective or true value that people who lead easier lives can miss out on. If we always remembered this, perhaps we would turn out to be more accepting of disability and less prejudiced against disabled people.
Perhaps. Let’s hope. This is why I, and the disability studies folks who educate me, emphasize the “temporarily able bodied” construction as a DS 101 core concept. Disability waits for all of us, but the thought need not drive away whatever happiness we are able to find.