As I stared at the steps leading to the restaurant, I ran through a mental list of the summer. The lift that was too small for a wheelchair, the “accessible” spa hotel that had a spa that was not accessible, the terrace ramp that led nowhere. The polite but awkward apologies from the unfortunate staff member always followed and I always played my part politely, awkwardly accepting them.
When London’s “poor doors” – the separate entrances for less wealthy residents of certain buildings – hit the news last month I couldn’t help but think how, for some of us, this segregation has occurred for years and with little public outrage. For wheelchair users, the goods entrance is a familiar way in. Sometimes I think the upmarket businesses are the worst, whether it hasn’t occurred to them someone with a disability would want to be there or they acknowledge they do but can’t seem to care. Still, there is something special about an evening that starts squeezing past a crate of cabbages.
It’s these times that the social model of disability was made for – the theory that “disability” is not in our bodies but imposed by society, and we are subsequently unnecessarily isolated and excluded. In a 1996 work on the subject, disability advocate and academic Mike Oliver describes the distinction between the physical impairment and the social situation. “We define impairment as lacking all or part of a limb, or having a defective limb, organism or mechanism of the body and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities.”
When faced with steps at a building, it is not the need to use a wheelchair that makes the person disabled, it is that no one has thought to build a ramp. That we live within a discriminatory society that, bar the legal duty to make “reasonable adjustments” for disabled people, continues to put up man-made barriers – be them physical, financial, or cultural.
This is liberating on a personal level. “Suddenly, people were able to understand that they weren’t at fault: society was. They didn’t need to change: society needed to change,” writes Tom Shakespeare in a 2002 article. “Rather than the demeaning process of relying on charity or goodwill, disabled activists could now demand their rights.”
If people with “impairments” are disabled by society, then, rather than focusing on medical cures or what the person can do, the priority becomes “dismantling the disabling barriers”. As a matter of logic, as much as ethics then, it is better to pursue a strategy of social change, “perhaps even the total transformation of society”.
There is an unapologetic grandeur to such a call that I can’t help but like. This is not polite compromise, a grateful cap-in-hand to a generous benefactor. It is a call for equal rights from the state: knowing what you are owed and demanding it. For such grand claims, it might seem strange that I’m about to follow it with a note on language: the names we give the individuals and group fighting for their rights. But – in acknowledging how what we say fits with what we do and who we expect it from – it is our attitudes to the cause of disability that frame how we refer to disabled people. Or people with disabilities. Or the disabled. (If in doubt, I like to use all three terms and offend everyone equally.) These are not trivial things. “It’s about the crucial issue of causality, the role of language, its normalising tendencies and the politicisation of the process of definition,” wrote Mike Barnes in 1999.
I see this from commenters below-the-line who, from time to time, object to what term I have used to describe people who are disabled. (And more often than not, it will see someone advocating one term and another something else.) There’s no clear consensus but, as I stare at steps that have no reason to not be ramped, the feeling does emerge that I am a “disabled person”. As Barnes says, this is “the crucial issue of causality”.
If I’m a “person with a disability”, the argument goes, the onus is on my failed body; a deterministic bit of language that not only shifts responsibility from government but creates a sense of inevitably to any exclusion. If I’m a “disabled person”, society’s role in it cannot be avoided: I am an able person who has been disabled.
As Lisa Egan analogises disablement: “When I turn the wireless connection off on my computer, I get told that the connection has been “disabled”. Does this mean that my wifi has suddenly become less able or broken? Has my wifi acquired a disability? Of course not. It has been prevented from functioning by an external force. In a very similar way to how I’m disabled by bus drivers that just won’t stop if they see me – a wheelchair user – waiting at the bus stop.”
The focus is suddenly not on what the disabled person is doing but what is being done to them.
That is not to say the body or mind is innocent. If tomorrow every step was ramped, the tube network rebuilt, all hotel doors widened, exhaustion would still exist, limbs would ache, lungs would choke. As Jane Young puts it: “There are severe limitations to the extent to which the removal of barriers can ‘level the playing field’ for people who experience chronic pain, fatigue, diarrhoea, vomiting and other symptoms of illness.”
It becomes dangerous when people forget this; when a ramp is put down in every office and the accusation comes, “What’s wrong with you now? We did what you needed.” It becomes particularly dangerous when government’s do; as the welfare reforms wildly underestimate the impact of poor health on someone’s ability to take a job. (A real job, that is. The sort that expects you to turn up every day, to not take vomit breaks, or need to come in at 11am because of fatigue.)
Any discussion of disability has to include people with chronic illnesses – and acknowledge disability and illness often blurs. Disability is a biological reality as much as a social construct. “While in the cases of sexual and racial oppression, biological difference serves only as a qualificatory condition of a wholly ideological oppression, for disabled people the biological difference albeit as I shall argue itself a consequence of social practices, is itself a part of the oppression,” writes Paul Abberley. But there is a strong appeal in something that looks beyond the person, that highlights the imposed, unnecessary barriers that disable someone’s life. In enabling a voice that says, “This is not just about me. We are in a society and I deserve to be treated with respect and equality.”
We are not all born equal. Yes, we are in a somewhat abstract sense – and a legal one that says I count as much as you. But we are not born equally good at things (even with all the developmental conditions and medical intervention in the world): some have stronger muscles and others better wired brains, some faulty eyes and some inferior bones. Society can help the people born – in some ways – with less or it can make things worse. It can provide infrastructures that disable or decide to think of the citizens who need something different. It can want to provide support for people who need it or it can tell itself “They are not my problem” and walk past them. These are not inevitabilities out of our hands but decisions we have made and are making. As individuals, governments, and the citizens that vote for them. Are we proud of our decisions lately? It doesn’t feel as if we are in a time where we think of each other, where we see a problem and look to a bigger picture.
Disability has its place in a culture and politics which wishes to push the focus away from community and towards the individual; an individual who will either win or lose and will do so based on how hard they work and the choices they make. We saw this in the recent “Women Against Feminism” claims: there are no wider patterns, just women making decisions and some decide to be “victims”. The neoliberal mantra of personal responsibility thrives putting the blame on individuals, be them women, the poor, or disabled, and distracting from unequal structures and the state’s failure to address them. We worry not that we are failing to support disability, illness, or mental health, but what the existing support is costing us. (This view of cost can survive without logic, let alone decency. It does not matter that removing someone’s support may take them out of work and the tax system. Money matters. Even when the maths counters your economic argument.)
The cuts we’ve seen to disability support over the past year (and more) have encapsulated this attitude of individualism and by doing so, echoed an attitude to disability that puts the responsibility firmly on the person. By signaling the disabled and chronically ill as drains on a pressed public purse, they (figuratively as well as literally) isolate individuals, separating them from the less blame-worthy majority. It becomes natural to dismantle state support. There is no thought for what happens to someone, tired and aching, who has their disability support delayed for a year or rejected entirely. The individual is the cause of the problem and, if left to it, they can be their own solution. Benefit sanctions are a symbol of this belief: removing help doesn’t starve, it motivates.
There is a collective myth over how we’ve got here and how we get out of it: why some of us have more and others less, that giving a person support makes them dependent rather than provides the means to be independent. Social security is a dirty word in this climate – so much so that it’s slowly been renamed “welfare”. There is security in a sense of society and this is neither weakness nor dependency. The Conservatives co-opted the slogan “We are all in this together”, taking solidarity and bastardising it into an excuse for the state to do nothing and charities and families, already struggling, to take on the pressure. But its true meaning is one of state responsibility and personal empathy. It is what all of us will need at some point in our life – and for some, born with obstacles and given more barriers, need right now.
This time last year, on the first anniversary of London’s Paralympics, Tanni Grey-Thompson commented to me that daily discrimination was as damaging as the disability cuts. “It can be the little things that wear you down,” she said.
It is a little thing, to get in a restaurant, to sit at the table with everyone else. It is also one of the big things. To go to university, to watch the football, to use public transport, to be a part of things. We choose the way our society is built. In more ways than one.