Impairment seems, on the face of it, a very unpleasant phenomenon, which most people would prefer to avoid. You hear sayings such as “I’d rather be dead than disabled”. 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 so miserable to be disabled.
But in fact we’re wrong. It’s sometimes called the “disability paradox”: surveys reveal how people with disabilities consistently report a quality of life as good as, or sometimes even better than, that of nondisabled people.
Impairment usually makes little difference to quality of life. The research shows, for example, that overall levels of life satisfaction for people with spinal cord injury are not affected by their physical ability or limitations. Even the clinical fact of whether their spinal lesion is high or low, complete or incomplete – all aspects that affect functioning – doesn’t seem to make much difference. Human flourishing is possible even if you lack a major sense, like sight, or you can’t walk, or you’re totally physically dependent on others.
So what’s going on?
If you think about it for a moment, you realize that people born with an impairment have nothing to which they can compare their current existence. Someone lacking hearing or sight has never experienced music or birdsong, visual art or a sublime landscape. Someone with intellectual disability may not consider themselves different at all. Someone like me, born with restricted growth has always been that way. Even if life is sometimes hard, we are used to being the way we are.
For people who become disabled, there’s a typical trajectory. Immediately after onset of injury or disease, they may feel profoundly depressed, and even contemplate suicide. Yet after a period of time, they adapt to their situation, reevaluate their negative attitude to the disability, and start making the most of it. Often they are driven to greater achievements than before. Think of those amazing Paralympic athletes last year.
Maybe you are skeptical about the subjective nature of quality of life data. Bioethicists sometimes describe these self-reports in terms of the “happy slave” idea, in other words, people think they are happy because they do not know any better. Perhaps these cheerful people with disabilities are deluding themselves. Or, a completely different possibility, perhaps they are fooling others. Maybe in private they admit to misery, while in public they put on a brave face. Either way, commentators suggest, these people must be in some kind of denial
But these explanations are patronizing, not to say insulting. More importantly, they’re wrong. Research in a field called Hedonic Psychology has supported disabled people’s self- reports of good quality of life. Scientists such as Daniel Gilbert have done very thorough testing of what people say and how they think. They’ve come up with the concept of Hedonic Adaptation refers to the way in which after trauma, quality of life eventually returns to approximately what it was before the trauma struck. Amazing, eh? Unfortunately this also happens in reverse – if you are lucky enough to win the lottery, you’ll feel like ten million pounds for a year or two, but then you’ll go back to being as miserable or cheerful as you were before it happened.
So if these self-reports are true, we will need to find better ways of understanding the disability paradox.
To start with, we can offer more nuanced accounts of the psychological processes that go on in the mind of a person with disability. Adaptation means finding another way to do something: for example, the paralyzed person might wheel to rather than walk to places. Coping is when people gradually redefine their expectations about functioning. They decide that a stroll of half a mile is fine, whereas previously they would only have been content with a ten miles ramble. Accommodation is when someone learns to value other things: they decide that rather than going for walks in the country with friends, it’s far more important to be able to go to great restaurants with them. In these ways, over time, people come to terms with their limitation. This teaches us a important lesson: it appears that human beings are capable of adapting to almost any situation, finding satisfaction in the smaller things they can achieve, and deriving happiness from their relationships with family and friends, even in the absence of other triumphs.
Our appraisal of life with impairment may have less to do with actuality than with fear and ignorance and prejudice, all of which make the experience appear worse than it actually is. We have a distorted view of disability, made more graphic by the ways cultural representations of disability play on our anxiety about incapacity, and dependency. Remember films like The Sea Inside or Million Dollar Baby? The imagination is a dangerous tool when it comes to disability: we tend to exaggerate and mistake what life is really like for people with disabilities. We wrongly assume that difficulties for people result in misery for people.
Even to the extent that impairments do entail suffering and limitation, other factors in life can more than compensate for them: for example, an individual with access to resources, such as Philippe, the protagonist of the recent French box office sensation Les Intouchables can have a good quality of life notwithstanding his tetraplegia. Even someone who is not lucky enough to be a wealthy Parisian aristocrat can enjoy the benefits of friendship or culture, despite the restrictions that impairment places on her. By contrast, it is plain to see that someone can have a fully functioning body or mind and yet lack the social networks or the personality necessary for living a happy and fulfilled existence.
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 affected disabled people in poverty four times worse than the average citizen, while people who depend on social care have been affected six times worse than the average citizen.
In saying that social barriers are more of a problem than the impairment itself, I am not suggesting that it is completely irrational to fear disability. For a start, disability is very diverse in ways that mean we have to qualify the claim that “disability is no tragedy.” Some illnesses and impairments undoubtedly involve greater degrees of misery and suffering than the average human should have to endure. I’m thinking of depression, for example, which biologist Lewis Wolpert memorably labeled “malignant sadness.” There are some nasty and painful degenerative diseases. People who experience these conditions will certainly have periods of happiness and fulfillment. But overall, it is much harder to be sanguine about these forms of life than it is about impairments such as deafness. Discussions of the “disability paradox” are often qualified with the observation that impairments that involve considerable pain, whether physical or mental, are less compatible with a good quality of life.
It’s also true that in general, disabled people usually have fewer choices than nondisabled people. Most societies still have limited accessibility. Even in a barrier-free world, the disabled person is more likely to rely on mechanical devices – elevators, wheelchairs, communication devices – that periodically malfunction, rendering the individual excluded or dependent. Most disabled people become inured to the frustrations of inaccessibility or breakdown, but it certainly makes life less predictable and less free than it is for the nondisabled.
My point is that while disability is not simply an irrelevant difference, like the colour of your skin, neither need it be a tragedy.
But 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 pain and suffering, and ultimately to die. Even the good life contains difficulties. It would be fantastical to imagine a person whose life was free of any hardship. 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. Disability is not defined by frailty and vulnerability, because life itself is about frailty and vulnerability. If we always remembered this, perhaps we would turn out to be more accepting of disability and less prejudiced against disabled people.