Life with a disability or chronic condition is inconsistent.
On good days, personal and professional obligations are met, and a reasonable, if not uninterruptedly good, quality of life is enjoyed – there is the mental and physical capacity to interact with others.
On bad days, the limitations suddenly imposed lead to frustration, and obligations narrowly met, if at all.
Interacting with others outside the immediate family is impossible, constituting a demand on personal resources which are fully deployed just trying to make it through the day.
As a disabled researcher, staying motivated while pursuing an academic course lasting for several years while at the whim of fluctuating health conditions can be a complex and often lonely process.
In my experience, trying to communicate this reality to colleagues and providers is met with compassion initially.
However, a more comprehensive response over time to the shifting sands of life with a disability is often lacking. This is redolent of how professionals react to change in the workplace, when it is introduced at a strategic level – when long-established processes and systems are in place, lip service is paid to new initiatives but in reality, says psychologist John Fisher:
…people maintain operating as they always have denying that there is any change at all.
When everyone says – and often mean – “Poor you”, but then carry on regardless, this does little to enhance motivation for the disabled colleague for whom being at the mercy of their condition is a real, and lasting, psychological drain.
Making a difference
So what can a higher education provider do to reduce this sense of being a burden, and bolster motivation for disabled students, researchers and colleagues?
David McClelland advances the theory that people are motivated by achievement (n-ach), by authority (n-pow) or by affiliation (n-affil) to varying degrees, and says the responsibility lies with the organisation to create the right conditions to motivate, arguing convincingly that:
…any behavioural outcome is a function of determinants in both the person and the environment.
This means that the responsibility rests with the organisation to provide optimum conditions for every individual to be motivated and to perform, and this is an on-going process – not a once-yearly day of “awareness” for a particular condition.
The 21st of March is World Down Syndrome Day, but does sending our children to school in odd socks really transform people’s thinking about the condition? Disability support should be a strategic, year-round priority which informs the culture of organisations – and shouldn’t higher education providers, as the ultimate symbols of knowledge and understanding in our society, be leading the way?
This is not to say that changing any organisation’s culture is a quick or an easy process. Noel Tichy and Stratford Sharman identify three crucial steps which must be followed by strategic leaders seeking transformation – “awakening; envisioning; re-architecturing”.
The awakening stage involves a crucial shift from complacency in the status quo, by creating a shared understanding that the establishment cannot and should not continue in its current incarnation and needs to evolve. In the case of disabled colleagues, this deep understanding of the changes needed can only be achieved in consultation with those who are experiencing – first-hand and over time – the issues with the working environment and the general approach towards disability support.
Making this a “whole organisation” approach to consultation can be an opportunity to promote understanding and integration between disabled and non-disabled colleagues; research has found this to be:
…particularly powerful in bringing about change as it removed the onus from the individual and avoided disabled people being singled out.
While many universities have initiatives and working groups to consult with, and support, disabled students, researchers and staff, the socio-political landscape within which we are all immersed is impossible to ignore.
The current toxic, divisive rhetoric about people claiming sickness and disability benefit, and how they are costing the hard-working taxpayer too much money, could not be further from the positive vision of whole-organisation consultation on disability support.
The cuts to benefits which were announced by the government last month have resulted in widespread alarm amongst the disabled community – Scope says they constitute “a catastrophe for disabled peoples’ living standards and independence”.
The recent statement by the Secretary of State for Work and Pensions that “taxpayers are paying millions more for the cost of failure” through “spending on working age sickness and disability” actively promotes resentment and social division between those who can work, and those who cannot.
Universities can change communities
Against this backdrop of blame and misinformation, it is difficult for those of us with disabilities to feel that we are not viewed by at least some individuals as burdensome and problematic. However, in the absence of a cultural shift coming into universities from society, perhaps university-led initiatives can begin to build cultures which will, over time, impact their local communities.
“Access Insights”, a project by Disabled Students UK, encapsulates this idea beautifully in their tagline, “We believe in the power of disability wisdom to better society”.
They recognise that disabled students have a deep understanding of how accessibility can be achieved in the university environment and offers institution-specific recommendations to universities who become Access Insight members. Using a evidence-based approach, they consult with disabled students to evaluate their experiences and pinpoint what is going well, as well as what needs to be improved.
In the same way, it is only via consultation with the disabled community and a shift in mindset away from “us and them” to “all of us together” that true accessibility in society can be achieved.
The higher education landscape has a responsibility to set the tone and the approach to disability awareness and support – the Access Insight model provides a blueprint for how organisations can begin to consult on, and take accountability for, their strengths and weaknesses in relation to disability support.
For me as a disabled student, I have a responsibility to speak up and show my university how they can make my course truly accessible; and my university has the responsibility to listen and to respond.
The question now is – can there be a wider impact for communities and society, if higher education providers demonstrate what truly inclusive environments could look like? The answer is out there for the taking – one conversation, one blog piece, at a time.
