taking a disablity-led perspective
by Jos Boys (August 2008)
Most disabled and Deaf people say that the biggest problem is not so much their impairment, as the disabling attitudes and barriers that come from others:
Disabled people have to work continually against destructive forces which see us as powerless, passive and unattractive. It seems that no matter how cheerfully and positively we attempt to go out in the world, we are bound to be confronted by someone whose response to our lack of ordinariness, and difference from the norm leaves us feeling powerless and angry. Trying to understand the complicated feelings which arise out of our everyday encounters with the world is central to the lives of disabled people.
In fact, if you bring any group of disabled people together, before very long we’ll be swopping stories about the annoying, appalling, patronising, insensitive, unhelpful and sometimes just plain funny encounters that we have on an almost daily basis…
Lois Keith “Encounters with Strangers” in Morris (Ed) Encounters with Strangers: Feminism and Disability The Women’s Press 1996 p70
In this article I will bring together a few different disabled voices from the existing literature, to challenge some of the assumptions about what disabled people ‘are like’, what they ‘need’ and to show some of the ways in which disabled writers are arguing for changes in attitudes and approaches. The aim here is just to introduce some of the issues, not to substitute for taking notice of the many diverse narratives and strategies of disabled people themselves.
Disabled narratives and strategies
Lois Keith writes about the impact of becoming disabled and “the difference between how I wanted to see myself, as a now visibly different but still competent and private person, and how others saw me and would continue to see me” (p70). She explores how this shift in relationships is played out from a disabled perspective:
We are not supposed to understand that non-disabled people feel uncomfortable at our presence in the world and that what they sometimes feel is more than discomfort, it is revulsion. The central confusion of the relationship between us is that on the one hand they are disconcerted by our presence, and are confused about how to behave towards us or even what words they should use to describe us, but on the other hand they have a clear idea that they should be helpful and kind. Our part of the bargain is to ignore their unease and confusion and accept the ‘help’. Our gratefulness is part of the lie that everything is really alright between us.
Lois Keith “Encounters with Strangers” in Morris (ed) 1996 p81
Keith says that – particularly where a disability is visible – the most immediate problem is that non-disabled people cease to see other ‘normal’ markers of social position and identity (class, gender, social status), as routinely ‘read off’ from each others bodies when we first meet. All that is seen is the disability, making initial encounters awkward, and framing disabled and deaf people in ways that they themselves do not recognise. Only seeing the disability dehumanises disabled people; they voided of any ‘normal’ characteristics, personalities or preferences.
At the same time, conventional social responses to others are also altered where there is the appearance of (or assumption of) a disability. As Keith goes on:
All social encounters are governed by rules of behaviour. There are things that it is normally acceptable for strangers to say to each other and things that are not. For example, in the particular section of British society in which I usually mix, it is considered okay, indeed complimentary, to remark that people are thin, but rude to say that they are fat. It is acceptable to tell people that they are tall, but impolite to remark on the fact that they are unusually short. And there are things that people feel that they can say to disabled people which they wouldn’t dream of saying to anyone else.
Lois Keith “Encounters with Strangers” in Morris (ed) 1996 p72
This includes asking complete strangers ‘how did you get like that then?’ or treating disabled and deaf people as if they are childlike, passive and incompetent. Here disability is assumed negative, not whole, a lack and 'less than' normal; even worse commenting on it is not an intrusion of privacy (who would ask someone bald how long they had had that condition?)
Unfortunately this ‘conventional’ non-disabled response is also understood as about being kind and charitable (precisely because disability is seen as childlike, associated with illness and old age); for which disabled people should feel gratitude. Encounters therefore start out already skewed and unequal. Sandy Slack writes:
They have made some judgments already because they are privy to visual information about me which they then feel at liberty to comment on. The opening to the conversation will mostly be ‘how long have you been in a wheelchair?’, or ‘what happened to you?’. (…) The effect is to block the possibility of opening the conversation with equal information sharing about each other. (….) I wish I could say I have dealt with this dilemma but alas I have not. My responses are as varied as the colours of the rainbow and depend on so many other factors. I am not consistent. It depends on the who the person is, the occasion, the importance, my mood, my energy, my quickness of mind and my desire not to sound rude on the first meeting.
Sandy Slack ‘I am more than my wheels” in Corker and French (Eds) Disability Discourse Open University Press 1999 p33
This framing of the encounter from the assumptions of the non-disabled also acts to police what is considered acceptable behaviour by disabled and Deaf people, particularly the display of anger and frustration:
I always feel alone with my frustration. Here a complex set of emotions comes into play. Most friends deny me my justified anger, and because of their embarrassment I am drawn into a game which on the one hand wants to protect them, and on the other wants to scream at them for not seeing the oppression for what it is. (…) From day one I have been fed a diet of goodwill, well meaning, persuasion, steady debate, until I feel obese with it all. Overflowing with too much trying, bloated with patronage, engorged with the rigidity of the world around me. In the early days it felt easier to let people do what they needed to do in order to feel good about themselves and confirm my disability. I colluded with this script for a while in an attempt to keep the peace and conserve energy. Until one day with almost thundering recognition it dawned on me that this compliance had little to do with my legs not working or the pain I experience but everything to do with denying my rights. My right to move freely and choose a variety of life experiences.
Sandy Slack ‘I am more than my wheels” in Corker and French 1999 p31-2
Here is an ugly and inconvenient truth; it is not non-disabled people who ‘look after’ the disabled, but disabled and deaf people who find themselves protecting the non-disabled from their own fears and confusions. Keith also describes some of the strategies she uses for coping with these non-disabled attitudes, such as avoidance, politeness, anticipating difficulties, getting in first, taking an educator role, humour and anger (Keith in Morris (ed) 1996 pp85 – 87). As she says:
People offering help or asking questions is not in itself dis-empowering, but it is when we know that behind these questions are a whole set of assumptions about how awful the quality of our life must be and how fortunate they are to be not to be us. Just as difficult is the other side of the coin – the ‘I think you are so wonderful, I don’t know how you do it’ kind of approach. Disabled people rarely, if ever, experience this as praise, unless it is said when we are doing something wonderful, rather than getting on with the business of living.
Keith in Morris (ed) 1996 p.87
Conforming to type?
As Keith says, disabled and deaf people are, just like everyone, simply trying to get on with the business of living. But as well as dealing with non-disabled responses to their appearance, disabled people must also develop strategies for dealing with the stereotypes of their particular category of disability, assumptions that disability is a lack, and that they will be assumed incapable however effective and efficient they are.
For example, non-disabled people tend to see wheelchairs as an additional impediment, something that gets in the way and adds complications to ‘normal’ mobility. But wheelchairs are an enabling device, not a negative metaphor of lack – not “ a symbol of need and dependency” (Keith p 71). Rather, “people like myself who rely on a wheelchair, for mobility and independence, see it as a piece of liberating equipment.” (Keith pp 75-76.) Or as Slack writes: “ my wheelchair is my best friend – I wheel it with pride and confidence. It takes me into the world” (Slack p 35.):
I have noticed that most people who are in work live some distance from their workplace. They are not able to work the long distance, so they usually look for some form of transport for their mobility needs. It may be a private car or public transport. This is considered the norm and in no way would it ever be described as a special need. Disabled people who require a wheelchair or a car for their mobility needs are described as having a special need. To disabled people this is neither a need nor special, it is an essential norm. Why, then, is it so difficult to obtain the mobility which is appropriate to that person’s life?
Sandy Slack ‘I am more than my wheels” in Corker and French 1999 p34
In fact, wheelchairs only get in the way of non-disabled assumptions about what constitutes individual mobility rights; by demanding space in the wrong places (entrances, interiors etc.) where unencumbered walking is assumed the norm and anything else a problem. Cars, another mobility aid, also take up space, but making space for car-parking is just another ‘normal’, unnoticed spatial practice (except, interestingly, disabled parking, which is often seen as problematic by non-disabled people as giving an unfair advantage to the disabled).
Sally French uses her white cane both as a mobility aid and, on occasions, as a device to signal to the non-disabled:
White sticks can be used to supplement communication. I use a white stick intermittently as a symbol of visual disability. I use it to influence people’s behaviour, for example, to attract their help or to alert them to take care. (…) Despite this, I do not feel that people will believe it if, having used the white stick to cross a busy road, I fold it up and read a book. The feeling of discomfort to which this gives rise in the presence of others is very strong…
My feelings about using my white stick are mixed. I regard it as a symbol of independence rather than a symbol of dependency. It is understood throughout the world and has assisted me in travelling with confidence in unfamiliar countries on my own. I constantly feel, however, that others are judging me and thinking I am a fraud…
Sally French “The wind gets in my way” in Mairian Corker and Sally French 1999 p 24
Like many blind and partially sighted people, Sally French has some vision, which affects how she engages with different contexts (close-up, complex visual situations, crowds). Here, though, the assumptions of the non-disabled that people are either blind or sighted affects her self-confidence in her own strategies, through the worry that she will be ‘read’ as fraudulent in her particular form of partial sightedness (as has happened to her; p 24). Like many other disabled people she must also ‘manage’ situations where assistance is offered or requested. As she says, politely:
Most people I approach are willing to help in any way they can and many volunteer. Mostly I am treated with respect. Taking control by stating with assurance, exactly what help is needed seems to discourage condescension and patronage and induce relaxation and confidence in those from whom help is sort.
Sally French “The wind gets in my way” in Mairian Corker and Sally French1999 p 24
Lois Keith is more forthright. Many other authors have noted the important difference between ‘care’ and ‘help’. Care implies a passivity – that disabled people cannot look after themselves or after others; help suggests a more equal sharing:
The cultural message that you must be kind to ‘the handicapped’ is a very powerful one. It acts as a mechanism which both distances the ‘giver’ of kindness from the recipient and allows then permission to patronise. The idea about caring for and caring about people who are less fortunate than ourselves is important (…) but unfortunately this state of goodwill and generosity often works to dis-empower disabled people.(…) As Jenny Morris argues, ‘our gratitude is an essential part of the relationship; charity is actually about making the non-disabled person feel good about themselves…
What harm is there in being grateful for the help that others give you? Well none if that help is freely offered on equal terms with nothing required in return except a simple thank you. All the wheelchair users I know say an awful lot of thankyou’s each day and we do so quite happily when people open heavy doors for us, see us sitting looking at a steep ramp and ask if we’d like a push, offer to take a tray of cups of tea to the nearest table for us, remove a chair so we can sit at the table and drink it or make any of the other thoughtful gestures which many people do each day. This is non-threatening, non-invasive assistance which makes both parties feel good about the other. It works on the basis that people will stop and look at us, ask if we would like a hand and move on if we say no. The problems come when people’s motives for offering to help are not so straightforward.
Lois Keith “Encounters with Strangers” in Morris (ed) Encounters with Strangers: Feminism and Disability The Women’s Press 1996 p79 - 80
‘Passing’ as normal
As well as assuming that the world divides non-problematically into the able-bodied and the disabled, many non-disabled people also assume that having a disability is obvious, that it can be ‘read’ off the bodies of those who are ‘different’ either through their appearance or actions. In fact, the diversity of our bodies makes this much more complex. People may be born with an impairment, or develop one later in life; it might be chronic, variable, or short-term. Many people may show no obvious physical symptoms, or can keep their exhaustion or medication ‘hidden’ from others.
Because the dominant social narrative of disability is about it’s overcoming, about approximating as much as possible to the ‘normal’; and because disabled and deaf people just want to get on with the business of living, many play down the extent of the additional work and effort expended so as to ‘pass’ in an un-noticing non-disabled world – and the personal and psychological issues this raises:
I was born without a left hand, an impairment which I began to conceal at some point in my childhood (probably around 9 or 10 years of age). This childhood concealment strategy has left a long legacy: I still struggle with the ‘reveal or not to reveal’ dilemma, and more often than not will hide my ‘hand’ and ‘pass’ as normal. But concealment carries, and continues to carry, considerable psychological and emotional costs and has real social consequences. This hiding strategy was partly bound up with school life, but looking back I think a key influence was my association with the ‘Roehampton Limb Fitting Hospital’. (…)
The main ‘prize’ of these visits was a series of artificial, or ‘cosmetic’ hands. These were ghastly, heavy and uncomfortable objects which I invariably relegated to the drawer soon after receipt. (…) You could count the number of times I wore these on the fingers of one hand! However, they did their work indirectly because the underlying message was clear. The ‘experts’ were saying that my hand was something to be hidden, disguised. I had to appear as normal as possible. I found the easiest solution was to keep my ‘hand’ in a pocket, and I became very skilled at this concealment. Thereafter I always had to have clothes with a strategically placed pocket. So it was, and so it is.
Carol Thomas ‘ narrative identity and the disabled self’ in Mairian Corker and Sally French (eds) Disability Discourse Open University Press 1999 p54
Getting on with living
The shift from the medical model, which sees impairment as a personal tragedy, to the social model, which focuses on disability as a socially constructed concept framed by the barriers to everyday life in the external world has been very important. However, more recently, some disability activists have been re-exploring how to re-integrate the personal experiences of impairment with the public framing of disability. As Liz Crow writes in considering disability campaigning strategies, disability does have (many diverse) effects which need to be considered:
We align ourselves with other civil rights movements and we have learnt much from these campaigns. But we have one fundamental difference from other movements, which we cannot afford to ignore. There is nothing inherently unpleasant or difficult about other group’s embodiment: sexuality, sex and skin colour are neutral facts. In contrast, impairment means our experience of our bodies can be unpleasant or difficult. (…) Yet our insistence that disadvantage and exclusion are the result of discrimination and prejudice, and our criticisms of the medical model of disability, have made us wary of acknowledging our experiences of impairment. Impairment is safer not mentioned at all.
(….) What we need to do is to find a way to integrate impairment into our whole experience and sense of ourselves for the sake of our own physical and emotional well-being, and subsequently for our individual and collective capacity to work against disability.
Liz Crow “Including All our Lives” in Morris (ed) Encounters with Strangers: Feminism and Disability The Women’s Press 1996 pp 209-210
Having an impairment does challenge some of the assumptions about ‘what is normal’, particularly in terms of everyday encounters with both others and the built environment. We live in a world where the mobility and independence of individuals is highly valued; but where, at the same time, people who are less than fully mobile or also part of a network of inter-dependencies become the problem; don’t quite ‘fit’ and must deal themselves with the consequences. This applies to anyone whose mobility and independence is restricted, such as mothers with small children, older people, and people with less access to resources, through poverty or social position. But it is also important to reclaim the realities of different impairments, not to downgrade or blur together the diverse experiences of disabled and deaf people:
..the perception of impairment as a personal tragedy is merely a social construction; it is not an inevitable way of thinking about impairment.
Recognising the importance of impairment for us does not mean taking on the non-disabled world’s ways of interpreting our experience of our bodies. In fact, impairment, at its most basic level is a purely objective concept which carries no intrinsic meaning. Impairment simply means that aspects of a person’s body do not function or they function with difficulty. Frequently this is taken a stage further to imply that the person’s body, and ultimately the person, is inferior. However, the first is fact, the second interpretation. If these interpretations are socially created then they are not fixed or inevitable and it is possible to replace them with alternative interpretations based on our own experiences of impairment rather than what our impairments mean to non-disabled people.
Liz Crow “Including All our Lives” in Morris 1996 p. 211
Crow therefore suggests thinking about impairment always in three, intersecting ways: as an objective concept; through the diverse and subjective understandings of impairment “in which and individual binds their own meanings to the concept of impairment to convey their personal circumstances” (Crow p. 212) through listening to the narratives and strategies of disabled people themselves; and through critical engagement with the wider context and the ways in which disability is socially constructed, “in which misrepresentation, social exclusion and discrimination combine to disable people with impairments” (Crow p. 213).
Beyond disability as a personal lack
Antony Hagan has explored how some of the different people he interviewed - who became deaf in later life - developed strategies for living their lives in the intersections between the impairment, their own understandings of their deafness, and wider social assumptions and beliefs:
(For deafened people) acting in (their new) context is about reconciling changes in the lived experience of social experience within available conceptual frameworks, which are managed within a context of being acted upon as well as acting, whilst trying to re-establish some direction in life – a direction that reflects some notion of normality.
Anthony Hagan ‘Carving out a space to act: acquired impairment and contested identity’ in Mairian Corker and Sally French (eds) Disability Discourse Open University Press 1999 p81
Each of the three people he interviewed developed a different strategy:
Carol translated the communication ideas she had learnt across various aspects of her life. At work, she set up mirrors so that when she could not look directly at clients she could still see their faces in the mirror and lip-read. For her it became a challenge to ‘pass’ in the hearing world on their terms. (…) Carol regarded herself as more fortunate than most – the little residual hearing she retained greatly aided her ability to lip-read and therefore pass as a hearing person. (…) Passing offered a limited form of liberation – that one had overcome one’s disability.
Anthony Hagan in Mairian Corker and Sally French 1999 pp83-4
The other two interviewees had both learnt sign language and engaged in both hearing and deaf communities. Both are supported by a strong belief in Deaf culture and Deaf pride. As Jan says:
The benefit of being with deaf people is that in some ways we’ve still got the same problems with hearing people. I mean if we’ve speaking with someone and you cant understand something and you ask them to repeat it, you are not treated as if you are stupid or that you have no IQ or you have nothing between your ears except cotton wool.
Anthony Hagan in Mairian Corker and Sally French 1999 pp89-90
Other groups of disabled people are also redefining themselves politically as other than a ‘normal’ person with a lack. Some people with aspergers, for example, say that it is NTs (Neuro-Typicals or normies) who lack rational, non-emotional reasoning powers. As these newer categories of disability, based on neurological differences between people such as aspergers syndrome, autism, dyspraxia, and dyslexia, come to the fore, they again offer new ways of exploring and enjoying difference:
The neurologically different represents a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability (…) even our most taken-for-granted assumptions – that we more or less see, feel, touch, hear smell and sort information, in more or less the same way (unless visibly disabled) – are being dissolved.
Judy Singer “Why cant you be normal for once in your life?” in Corker and French (eds) Disability Discourse OUP1999 p64
The responsibilities of non-disabled people
For non-disabled people, these more complex understandings of impairment and disability means moving beyond seeing impairment as ‘out there’, a clearly definable and straightforward fact, embodied (thank god) by someone else. Rather impairments exist in the space between us:
I (first) met Rod as a blind man, but one who could see. He could see …but not quite; what I could count understand, count on or see as seeing was never all that clear when I was with Rod. It was a confusing state of affairs that threw into question for me what seeing and blindness are supposed to mean. (….)
This confusion flowed from my conception of blindness and sightedness as radically opposite. Either Rod was sighted or he was blind. Fixed oppositions according to Scott (1998:33) ‘conceal the extent to which things presented as oppositional are, in fact, interdependent.’ Not only did my conception of blindness as opposite to sightedness conceal their interdependence in Rod, it also concealed from me the need to think about this interdependence.
Tanya Titchkosky “Cultural maps; which way to disability?” in Mairian Corker and Tom Shakespeare (Eds) disability/postmodernity ; embodying disability theory Continuum 2002 p102
As she says, the most common cultural map of blindness is as ‘not seeing’ – “defining blindness as a kind of negation of sight is regularly expressed in everyday life”(Titchkosky p103). Again, as with Crow, this is about the importance of listening to how disabled people understand their impairments. As Rod (Michalko) himself writes, if blindness is seen as strange (estranged) and opposite to sight as the familiar, then in fact it is the experiences of blind people themselves which is negated. He observes the interaction between Jenny, an 8 year old girl blind from birth and her Orientation and Mobility instructor, Cheryl, who is teaching her to use a white cane:
Jenny depicted knowledges, (of the sky and carrots) to Cheryl and to me and did so from the location (standpoint) of blindness. Cheryl saw a problem with this depiction (…) it was knowledge gleaned from the location of blindness and thus defective. Cheryl learnt nothing of the sky or of carrots from Jenny. Cheryl learned only what she already knew – that Jenny had a lot of work to do on concept development.
Jenny was learning how to use a white cane as a mobility device and she was learning about carrots. But there was a hidden curriculum and Jenny was learning something else – she was learning that she had local knowledge, knowledge that came to her through here blindness. (…) Jenny is learning that her knowledge is located only in the space of her blindness and that this knowledge does not count and is even defective in the imagined geography of sightedness. Jenny is learning that the space of blindness is a private space and that it is a detriment to her movement and understanding of the public space of sightedness.
Rod Michalko “Estranged-familiarity” in Mairian Corker and Tom Shakespeare (Eds) disability/postmodernity ; embodying disability theory Continuum 2002 p178-9
Here, the understandings of blindness from a blind person’s perspective, are being constantly downgraded in relation to the experiences of sightedness as a way of understanding the world. So taking a disability-led perspective is also about non-disabled people taking responsibility for unravelling how ‘normal’ bodies are themselves mapped. These ways are easily ignored; they can be lived in a state of distraction because the everyday work of reproducing routine social and spatial practices is often invisible;
…language recommends that we conceive of the able-body as something that just comes along ‘naturally’ as people go about their daily existence. People just jump into the shower, run to the store, see what others mean while keeping an eye on the kids, or skipping from office to office and, having run through the day whilst managing to keep their noses clean, hop into bed. All of this glosses the body that comes along while, at the same time, brings it along metaphorically. Speaking of ‘normal bodies’ as movement and metaphor maps them as if they are a natural possession, as if they are not mapped at all.
Tanya Titchkosky in Mairian Corker and Tom Shakespeare 2002 p103
What the interaction between Tanya and Rod brings to engaging with disability is the value of attentiveness to our bodies and our relationships with things and each other; of engaging in work in understanding what is going on in the everyday practices and accomplishments of life. This is not about trying to measure the functional differences of an impairment, it is about – in this case for example - carefully mapping the social character of what constitutes seeing. For Tanya, then:
In so far as seeing is cultural, sight is a social accomplishment and blindness is a kind of forced consciousness of the work necessary to achieve it. This is a key lesson that accompanies my shift away from attempts to reduce disability to a concrete reality and to mapping disability as a complex set of social interactions.
Tanya Titchkosky in Mairian Corker and Tom Shakespeare 2002 pp107-8
Of course, as Sandy Slack says:
For each group described here there will always be an individual who can tell their story in a different way. The labels gathered along the way, like elderly, disabled, single parent, homeless, lesbian or gay, criminal, disturbed child, will all have behind them a personal experience which does not fit the frame of what constitutes that label in the public eye or the public perception of that label. Each story, each experience is valid and incredibly important if we are going to understand what lies behind the label. If each story helps us to change the way we do things then of itself it is invaluable. For too long we have worked to formulas and categories and have failed to hear the story which is born of reality. The more people tell their story the more society will see for themselves where the barriers to living lie. They are so obvious they cannot be missed.
Sandy Slack in Corker and French 1999 p36-37
Selected Readings
Mairian Corker and Sally French (Eds) Disability Discourse Open University Press 1999
Mairian Corker and Tom Shakespeare (Eds) disability/postmodernity; embodying disability theory Continuum 2002
Lennard J Davis My Sense of Silence: Memoir of a Childhood with Deafness University of Illinois Press 2000
Kenny Fries Staring Back: the disability experience from the Inside Out Plume 1997
Temple Grandin Thinking in Pictures: and other reports from my life with autism Vintage Books 1995
Nancy Mairs Waist-High in the World: A Life Among the Nondisabled Beacon Press 1996
Rod Michalko The two in one: Walking with Smokie, walking with blindness Temple University Press 1998
Susannah B. Minter Unruly bodies Life writing by women with disabilities University of North Carolina Press 2007
Jenny Morris (Ed) Encounters with Strangers: Feminism and Disability The Women’s Press 1996