Blogging Against Disablism Day: The political and the deeply personal
|One Blogging Against Disablism Day, I was struggling to update the archive page. When overwhelmed, cognitive dysfunction can deny me access to very basic bits of information – I have forgotten my own name before, let alone my address or telephone number. At this point, I was having trouble listing the contributions in alphabetical order – something lots of people might struggle with when tired. In particular, I couldn't for the life of me work out whether M came before N or vice versa. So I asked my then husband which came first.|
A brief exchanged followed. It was impossible that I couldn't remember which came first - I wasn't that stupid. I said that honestly, I couldn't remember, and reached for the dictionary, which I should have done first. Asking might have been quicker, but I had obviously picked a bad moment. My husband got up and punched the back of my laptop screen, cracking the case. For a moment I thought the screen was going to die and I would lose my computer in the middle of BADD. That's why I know what the date was.
The damage was kind of unlikely – I guess he meant to punch the laptop shut, but instead it cracked. My ex-husband did not value my things very highly, except when he wanted to criticise. He referred to my things as shit. As in, “There's some of your shit on the kitchen table.” or “Make sure you tidy your shit away before someone comes round.” After I left, I found I was in the habit of referring to my things as my shit, even though I had always objected to it.
The political is sometimes deeply personal.
Disabled people don't get abused because we inspire abusive behaviour in others. It's not even a matter of physical vulnerability and social isolation – although these can play a role. Marginalised people of all variety get abused because we are marginalised, and with marginalisation comes vulnerability, even attractiveness to those people who feel more comfortable with power and control rather than love and respect.
In the last year, I have been asking myself a lot of questions about how and why I remained in a relationship where I was shouted at, mocked, undermined and physically assaulted on a regular basis. There are a lot of answers that I'm still sorting through, about my vulnerability, about the mechanisms of abuse and also about my capacity to see the good in people, my capacity for love, loyalty, hope and so on. But disablity is a big part of what made me vulnerable.
Statistically, being disabled made me three times more likely to be abused than other women – which means that pretty much half of us will experience violence at some time. Disabled men are twice as likely to be abused as non-disabled men and are likely to have even more trouble identifying their abuse and getting appropriate help. I feel it is a near-certainty that somebody reading this is in an abusive relationship right now, which is a big part of why I am writing this.
Initially, it was very difficult to see my personal experience as anything other than the effect of a particular dynamic between my ex and I. After all, I was well aware of the relationship between disability and abuse (physical, verbal, sexual and financial) and thought it had nothing to do with me. My ex was not a monster – I was never more than bruised - and I was an outspoken feminist disability-activist type who wouldn't put up with anything too awful. But now I see that my cultural experience of disability left me particularly vulnerable to accepting all kinds of perverse normalities in my every day life.
For example, I honestly thought it was normal that what I could and couldn't do should be constantly questioned and cast into doubt. It seemed normal that I should have to defend myself against the ever-present suspicion that I must be either milking it, exaggerating my pain and fatigue or not simply pushing as hard as I might. There was a regular, baffling accusation that I acted more sick when I was at home with my ex than on days when I was out with family and friends. Of course, I only ever went out on good days and then with all that extra stimulation, the adrenalin kicked in to make them very good days before I returned home to crash for a week or so. My family and friends never saw me on mediocre days, let alone bad days.
As disabled people in education or at work, claiming benefits or special equipment, attempting to access goods and services, even in healthcare, we are treated as if any accommodation is a privilege, as if none of our experiences are legitimate until we have convinced other people. Our culture struggles with the inconsistency of chronic illness, the idea that variable limitations are real limitations and it allows this to be other people's business. We should be far more outraged by the social sport of judging other people who don't seem very ill, who have a disabled parking badge but who have been seen walking, people who's illnesses have dragged on so long that maybe they aren't trying hard enough.
Speculating about the honesty with which another person reports their health is as intrusive as speculation about the honesty with which someone expresses their feelings for loved ones. I don't even believe that this doubt was genuine – it was even less consistent than the ups and downs in my health – but this was a weapon our culture made available.
It honestly seemed normal that providing someone with help that they needed because of an impairment should be considered special, burdensome and deserving of infinite gratitude. Making a meal for yourself and your partner because someone has to do it is no work at all, but making a meal for yourself and your partner because she can't physically do it is an encumbrance – especially when a disabled woman depends on her male partner. Other men, I was told, wouldn't put up with it. I was lectured on how difficult it was to transport and push my wheelchair, how difficult it was to include me in any trip out. I was repeatedly warned not to make myself a problem for other people, as if anyone who did me any kind of favour was performing a great act of self-sacrifice. Sometimes I received these warnings in front of other people, creating the impression that I was ungrateful and demanding and making it impossible to protest without sounding even worse.
In reality, I may have provided more practical help to my ex than he did for me (we ate very badly and my washing-up and laundry was well below his standards) but because of the few things I absolutely couldn't do without help, I was constantly reminded of my burdensome nature, my incompetence and my dependence on him. And every piece of help I received was first held to ransom. If I was going out somewhere, if someone was coming round, often even when he was cooking dinner, I would be warned to tread carefully or the trip, the visit, even the meal would be withdrawn.
We give “care” special status in our culture, when very few of these tasks are special. I have needed very little intimate care, but I need help with food preparation and housework and I need help getting out and about. When I live with other people, I believe I can make a contribution to a household roughly equal to the help I need, and this is the sort of thing that family members and friends do for one another all the time anyway. The only special thing about the help I need is that I couldn't manage by myself and if I lived alone I would have to pay for help. But then some non-disabled people who live alone and work very long hours pay for help because they don't have time for the kinds of tasks which I don't have the energy for.
I honestly thought it was normal that my competence should be repeatedly called into question. My cognitive dysfunction and poor co-ordination was met with anger, sometimes mockery. If I struggled for words, I was incoherent, inarticulate and it was a joke that I should consider myself a writer. If I was slow to answer, I was living in a “cloud cuckoo land”. If I fainted or collapsed, if I split things or dropped things, then I was stupid and careless. When I argued that it was a symptom of illness, I was told that I obviously wasn't safe doing anything on my own and thus threatened with a further loss of independence.
Disabled people, especially those with mental ill health, cognitive dysfunction and intellectual impairments, are regularly treated as if we are not capable. Having an impairment in one area – or even having experienced a temporary lapse – is seen to signify pathological incompetence. This leads people to be afraid of admitting diagnoses and asking for help. It is also a self-fulfilling prophecy; there is nothing so sure to damage a person's ability to perform any given task than repeatedly telling them they are rubbish at it. Since I left, my ability to manage my poor co-ordination has improved a great deal because I'm no longer in constant danger of being shouted at if I slip up.
People with long-term conditions usually acquire a high level of self-awareness, which often includes an awareness of circumstances in which we lack self-awareness. I have a very good idea about what I can and can't trust myself to do, and although I still undoubtedly make mistakes, everyone does. I think I behave far more sensibly than many non-disabled people do when they experience excessive tiredness – let alone when they are drunk.
It honestly seemed normal that my physical appearance and weight should be a cause of constant criticism and mockery. My body was sometimes disappointing, sometimes disgusting but most often simply hilarious. Every day I would hear jokes about how fat I was, accompanied by sincere concerned remarks that my physical difficulties were not down to my ill health but to my weight. This is about how heavy I was at my absolute heaviest. Most criticisms were about things which I had especially little control over because of my condition such as my weight, my unhealthy-looking pallor, the general lack of firmness and muscle definition in a body with serious problems exercising.
Disabled people receive the same nonsense messages about physical appearance, sexual attraction and personal value as the rest of us, except that we are frequently excluded by default; images of disabled people are extraordinarily rare in our culture (except the obligatory wheelchair-user on politically-correct information leaflets). There are even fewer circumstances where people with physical impairments are portrayed as sexually attractive. In fiction – especially English detective fiction, incidentally, I don't know why – disabled wives are a standard explanation for a frustrated and adulterous husband. In a culture where romantic love is sometimes spoken about as a transaction between people of varying looks, status, brains etc., disability is considered a major disadvantage.
In real life, disabled people are often attractive, some of us are beautiful and it is especially perverse that anyone should be criticised on their looks by their own lover. I also think I made a mistake in feeling it shouldn't matter, that to believe in equality meant thinking that it didn't matter if I was made to feel ugly. It did. None of us should ever feel ashamed to be seen.
The society in which I live does not condone what happened to me. However, disability contributed to my vulnerability because of how society treats disabled people. The experience of disability rocked my self-worth to the extent that it took a long time to see that I did not deserve to be shouted at, laughed at or assaulted at all, let alone in my own home.
The good news is that I got away and now I have recovered enough to be able to open up about some of this. The bad news is that many disabled women and men remain vulnerable to these kinds of relationships. Not just with partners, but with anybody in any position of power over us. Disabled people in the UK are increasingly vulnerable to abuse as their financial independence and the independence brought by care provision slips away. Meanwhile toned-down versions of the messages that abusers use about our integrity, our burdensome nature, our competence and our unattractiveness remain all over our mainstream media.
This post has taken a tremendous amount of courage to publish. I have combed through the archives to make sure that my ex is utterly anonymous, but my anonymity here is paper thin. I considered posting elsewhere or pretending this was a guest post, but I think it is important to say this here, as myself, because I have the strength to do so.