Introduction
The human mediated environment modifies the natural world to our advantage – but not for all. We make roads, footpaths and ramps over which people with impaired mobility can travel more freely, but this isn’t universal across our public spaces. The Social Model of Disability originally argued for a more inclusive design for people with impaired physical mobility. But making our shared public spaces more accessible should be about more than just mobility disabilities.
A few weeks ago, I watched a webinar on The Social Model of Disability – 40 years on. Speakers agreed that we needed to move on from it, but there wasn’t a satisfying exploration of where we might go. The webinar is worth watching because it does demonstrate where the conversation is up to at an academic level. I also watched a few videos featuring Tom Shakespeare. Tom is a Professor of Disability Research at the London School of Hygiene & Tropical Medicine and was a useful thinker for me because he is refreshingly clear.
Below I reflect this on conversation and the videos. I have previously expressed my discontent with the Social Model and argued a case for where to go next.
Re-thinking the Social Model
Current Social Model proponents induce some to believe that the Medical Model of Disability isn’t valid or useful. This is nonsense. It’s just not absolute. I am ‘disabled’ because of a physical condition. My ankles don’t work well enough to allow me to walk independently. That’s true in any situation or context. It’s got nothing to do with society. I can walk with aids – Canadian crutches mostly. But then the physical environment must be conducive. The natural world isn’t a place I can go walking – unless there are human made paths that cater to my needs. And human-made environs must also be conducive. So insisting that disability is determined by social factors is a very urban perspective.
The normal human made physical environment has been designed to cater to the needs of able-bodied people. This means that those who are not able-bodied are frequently unable to access human made structures (streets and paths, parks, buildings and so on). This is what the Social Model set out to address. It has succeeded in many ways. This has made it possible for people with disabilities who were previously unable to move around freely in public to participate in public life and to be seen – and be known about to a far better degree. But it’s still not a universal reality for those living even in major urban settings.
For multiple reasons the Social Model is now clunky. It is still relevant but in need of a rethink. Among those reasons are:
- New technologies that change the scope of accessibility and inclusion – on the physical, sensory and communal levels.
- New definitions of disability.
- New expectations about rights and dignities.
- New expectations about attitudes and behaviors
I don’t think we need to have a ‘model’ of disability at all. At the time the Social Model was developed the concept of a ‘model’ probably made sense, but now it does not. Now we have a swarm of theories and political passions that can end up engaged in pointless argument as they try to define disability according to their particular lights.
Disability is complex and highly individualistic. I want to suggest that we think of disability in terms of an ecology rather than a model. But let me be clear here. I mean this in terms of thinking about disability in the abstract only. Not in terms of thinking about people with disability – who belong within our communities as included members.
The term disability community is better used to denote a ‘community of interest’ rather than an actual community of people who get together for whatever purpose. This terminology risks being separative while it is intended to be the opposite. This is what happens when we fail to distinguish between abstract and concrete notions.
Personally, I detest the term. I don’t identify as being a member of a community defined by disability. Yes, I have friends who have disabilities, but that’s not why they are my friends. We do share our disability-related experiences because, as friends, we share our experiences. Disability is a significant part of my identity – but on a superficial level only. It makes me stand out because I get about with Canadian crutches and I am limited in where I can go and what I can do. But, aside from that (as Tom Shakespeare observes) life is good. I live with my disabilities; I don’t dwell on them. I think about disability a lot because it’s been the theme of my professional life for decades. Long before I acquired disabilities of my own.
Disability is profoundly context dependent, and most people encounter disability only within specific contexts. However, when we talk about Disability Inclusion or Disability Policy we get into far more abstract realms that we feel must be made more manageable by thinking in terms of models. This is where we have gotten ourselves into bother. We can put water from a river into vessels, but we cannot contain the river itself.
By focusing our attention on disability, we have fooled ourselves into thinking it is the only primary problem. It isn’t.
Advocates of the Social Model say that, in effect, medical impairments are not disabling, our attitude toward them is. This is bullshit. A person in a wheelchair has a better life when the physical environment isn’t full of impediments to them getting around in their wheelchair. But whatever puts them in their wheelchair is still real and still impacts their life in private. Wheelchair users don’t talk openly about their disability, probably because we have so many wheelchair heroes who are seen as disability advocates. They have an image to keep up. Besides, nobody wants to be thought of as a whiner. My brother uses a wheelchair and we talk often about our take on living with a mobility disability and what an utter pain in the arse it is.
We can quibble over the language we use. Not all impairments lead to disabilities in all contexts. Not all disabilities are the result of a physical human-made environment. The social environment is disabling in the same way the absence of a hearing loop is disabling to a person hard of hearing. It reduces potential for access and inclusion unfairly.
The Social Model has a focus on physical disability – especially mobility related. But when we widen our perspective to encompass the full spectrum of disability the Social Model becomes a blunt unwieldy instrument. How do we accommodate cognitive and behavioural disabilities which don’t necessarily require modification of our shared spaces – but of the attitudes and behaviors of those who use those shared spaces? What require modification are the beliefs, attitudes and behaviors of community members. This raises some complex concerns.
- Organizations can require certain behaviors of members – a code of conduct of some sort. But they cannot compel beliefs or attitudes.
- Communities are likewise constrained but to a lesser degree. Communities are able to impose sanctions on individuals few organizations would dare.
- Neither organizations nor communities strongly police behavioural standards. This is a practical reality. Not even authoritarian cultures are successful in this.
Without enforcement as a primary instrument, we are left with persuasion. Here we have three options:
- The moral argument
- The communal responsibility argument.
- Evolving our culture to be more compassionate and inclusive.
Each has its drawbacks if employed as a primary or singular approach. One again, simple models do not work well.
The tyranny of able normality
Accusations of ableism point to a presumption that most ‘normal’ people don’t have disabilities, and this constitutes an overwhelming portion of our community – which has the power to make decisions. This is true to a point because people who are able to work, and be in positions of power and influence aren’t necessarily aware of people with disabilities -who were mostly invisible to the general gaze.
The able and normal looked after themselves because that’s who they saw. But when we consider disability through a wide-angle lens what is normal takes on a different meaning. Impairments caused by accident, injury, illness or since birth or by reason of advanced age aren’t necessarily disabilities in a universal sense but may be so in one or several contexts only. Either people with such impairments are not often encountered or, unless an impairment is visible, it is rarely spoken of. And when it comes to older persons experiencing impairments because of advanced age, they mostly don’t see themselves as having a disability.
This can be specific government policy too. In Australia eligibility for the National Disability Insurance Scheme cuts off at age 65. At that age one is entitled only to the relatively poorly funded aged care system – even if the disability is not age-related.
Not all impairments become disabilities in contexts where they attract public awareness or require public accommodations or adjustments. What goes on in private isn’t reported. We miss a huge portion of the reality of living with a disability in consequence.
We have efforts at estimating the level of disability in a community but how reliable are they? It is estimated that 18% of the Australian population had a disability in 2018. This is from the Australian Institute of Health and Welfare so the data will reflect a strong methodology. But does that reflect reality or the constraints of a formal methodology?
How we deal with disability
So much depends on the size of a community – and hence the degree of connection with individuals. Families, tribes, villages, towns have different types of bonds compared with large cities.
What might be a personal sense of responsibility in one setting isn’t in another. If we belong to a large community in which anonymity is the norm our response to people with disability may be different simply because no sense of personal responsibility is triggered.
In communities or in organizations we cannot assume that non-responsiveness to disability is because the person doesn’t care. It could be that they already have care responsibilities and their capacity to do more is limited.
Not only is disability complex but so is normality and so is community. We are complicated beings who can’t be understood in simple ways – like models.
What is the problem?
When it comes to disability my focus is on problem solving. On a personal level it’s – “How do I achieve what I want to achieve?” When I was involved in service provision it was about the person with disability and their need to have a safe, dignified and fulfilled life – and how the organization and its people were going to do that. As a disability ERG lead it was about working with my employer to address the access, equity and inclusion issues of staff with disability.
The very theme of dis-ability is about not being able to do stuff – not having the ability to meet a need or satisfy a want or need. For an employee with a disability legislation and policy impose upon an employer a duty to assure access, equity and inclusion. But ensuring that duty is fulfilled in a compassionate or sensitive manner isn’t something that happens.
Disability has other dimensions. It can be the cause of pain, psychological distress, make relationships (social and intimate) difficult or impossible. It exists in these dimensions because there is a need unmet through inability caused by an organic condition that is not ‘normal’. Disability can manifest on a spectrum that progresses from mild and highly context specific to profound and global. How we respond as a community is important. But is this a social responsibility or something deeper?
The personal perspective
My recent foray into thinking on disability left me feeling as if academics and political activists have taken over and the business of addressing personal needs is being largely ignored. The situation is exacerbated by the dominant role of government bureaucracies in framing policies, strategies and doling out funds.
How do academic or political theories about disability help individuals in need of concrete solutions to real problems about access, equity and support? They don’t.
In the past 6 months the ‘disability advocates’ that I have encountered have mostly been privileged in some way. They are employed. They have visible disabilities which are often their trademarks – confirming they have a disability – but their insight into disability as a lived experience of disadvantage and exclusion is either limited or non-existent. Some are brashly political as if their performance is going to persuade others to change and become more compassionate and inclusive. It won’t.
Disability is changing as a thing in our communities for good and ill. There are good things happening in some areas and there are unresolved concerns that are harder to address in other areas because decision-makers are remote from the realities of lived experiences that have real existential edges to them – where people are actually suffering.
So, we can theorize about disability or we can act to address suffering. But here’s the problem. It is not only people with disability who may be suffering.
The Social Model holds that people are disabled by their society and that the resolution to this question is for society to create more inclusive environments. That’s sensible enough – to a point – dealing with physical, technological, policy, procedural and systemic issues. These can be discretely disability focused in ways that do not exclude others and may even help them.
But beyond that changes in beliefs, attitudes and behaviors that blend inclusivity into a culture cannot be disability focused. Empathy and compassion can’t be quarantined to disability alone. We cannot make a culture more inclusive of people with disability without making inclusivity a universal goal. It is true that some elements of our community think otherwise. But they are not representative. This doesn’t mean that you can’t be inclusive of people with disability unless you include everyone. That’s not true at a personal level. You can. But it’s not how things work in a complex, diverse and pluralist culture.
The Medical Model and the Social Model have roles to fill still – as elements of an overall response. Both models relate to a privileged state where such solutions are accessible. But in many parts of the world all there is is community and culture – and some external aid. I have written before about YPK in Bali. They are selling t-shirts and seeking donations to raise funds to buy a mini bus. It has been remarkable how few people in places privileged enough to think in terms of Medical and Social models have been persuaded to contribute to that cause.
Conclusion
How we think about disability is evolving. It is becoming part of our social discourse on identity in ways that weren’t apparent 15 years got when I got seriously into Disability Inclusion. I retain my focus on disability as a problem to be solved to address access, inclusion and equity concerns for employees and community members.
It’s not that I mean to dismiss or diminish the social discourse on identity, it’s just that it’s not an aspect that triggers my passion. It’s hard to do problem-solving well. So, it needs focused attention. This is especially so if, as I argue, we need to move to a post-model way of understanding disability and see it as a complex context-sensitive ecological way. Yes, this is a Social Ecology perspective. It embraces culture and community and the difficult business of inspiring people to disability as free agents who are not browbeaten by clumsy moral arguments.
It is not a linear model-based approach, but one which doesn’t try to craft hard definitions, set thinking rules, or make moral demands as if there is only one acceptable standard. In the complexity of disability there are some who need our help to participate in our shared lives to the best extent we can enable. It comes down to caring for others as an individual through whatever motivating means we elect.
Here’s an excerpt from the webinar – from Prof Scott Avery:
“Out in western New South Wales in Lake Mungo there’s an archaeological site and it’s got all these footprints in the clay. And amongst those footprints is a single right line of footprints, so it goes right footprint, right footprint, right footprint, no corresponding left footprint….. We tell this story of inclusion… the Mungo man story, the one-legged Mungo man, to say everyone has a place and purpose.”
Inclusion is an ancient impulse.