Disability and health advocacy is seldom a place for ambition, and it’s hurting us.
This piece was originally published on my LinkedIn.
Despite making up nearly half of the Australian population,* disabled and chronically ill people hold comparatively few positions of public office of influence and decision-making.
We are a barely visible minority in our representation at all levels in government despite making up such a large portion of the population. How we have ended up at this point isn’t a mystery, barriers of access are clearly identifiable to all - though they are rarely acted on or addressed by government more broadly.
Not being able to contribute our own lived-experience to inform decision-making and public policy means the world we live in today is not one of inclusive or considerate design.
There is one significant, and arguably critical barrier which isn’t discussed, despite it having a compounding effect on keeping disabled and chronically ill people away from the tables where decisions get made.
That barrier is ambition. We don’t lack it, so why do the ambitions of disabled and chronically ill people often go unfulfilled?
If you’re reading this and you know of me and my work, then you’d likely say I don’t seem to be someone found lacking when it comes to ambition in the face of adversity. But even in my adversity, I have the privilege of being able to act on my ambition.
That’s where this brief discussion on the role of ambition in disability advocacy starts. Ambition, or more appropriately the ability to act on it, is a privilege. It sounds like an obvious observation, but the surface acknowledgment of it betrays the true complexity that manifests beneath.
In the same way that I can want to go for a walk on a day that I am unwell and confined to bed but am unable to act, the difference between having ambition and acting on it is where, in the advocacy space, the disconnect between lived-experience and decision-making is seeded.
Stepping down another layer reveals the biggest barrier we face as disabled and chronically ill advocates - and when I say advocates, in the context of this discussion, I mean those that are currently advocates and, more importantly, those who want to be.
Being disabled makes existing really, really hard. I use the word existing, because living - actively enjoying and acting on the desires and ambitions sparked by life and the world around us - is a privilege.
The cost of living for disabled and chronically ill people is, on average, 28% higher in developed countries than it is for the rest of the population.* It’s only within this layer we start to see the picture coming together, giving us a better insight into that question of the limitations around ambition.
Some important considerations to now keep in mind in light of the cost of living are that those living with a disability are often faced with barriers to employment, and that those who overcome them are usually focused on ensuring they can maintain stable employment in order to satisfy those higher costs of living.
When your ability to sustain your existence is dependent on maintaining consistent and stable employment, and the opportunity for employment is itself a privilege seldom afforded to many in the disability community, that internal spark of ambition - the drive and expenditure of energy and resources to pursue change and meaning - becomes something that threatens stability.
That threat to stability, and the necessity of sustaining a means of existing that supports the immediate needs of health care and support, works to dampen that spark.
Consider further that whatever change there is in our health is rarely an improvement - and so as time passes the necessity of stability is compounded - that spark of ambition fades into the darker parts of our mind reserved for those brief glimpse of the privileges that others enjoy.
Even amongst those of us with the lived-experience to contribute to the discussion and inform decision-making, the privilege of being able to pursue that ambition to contribute is one few of us able to act on.
I’ve often remarked that even active advocates form a minority within their own communities of experience, especially in health and disability. This, as I consider it, is because people are usually either consumed by the challenges they face - spending every waking minute of their day just trying to stay afloat - or they prefer to put their encounters with adversity behind them out of a desire to not relive the trauma of their pain by reflecting on it.
In a similar way to that remark, the same diminishing returns regarding this discussion of ambition hold true. Those living with chronic illness and disability are often, in being consumed by staying afloat, forced to adhere to what is stable. In the case of employment and advocacy, many simply cannot afford to pursue it, as the ambition that drives it threatens the stability that sustains their existence.
Change, reform, and innovation are by their very nature a product of ambition. Barriers to ambition in the disabled, and disability advocacy community are preventing us from contributing to and leading those discussions on change, let alone being the ones to make public life-altering decisions informed by, and that affect it.
In a previous article I discussed the importance of paying advocates that you engage with. If you haven’t read it I encourage you to, as it addresses an important barrier that needs to be removed in order to break down others - like this reflection on the role of ambition in empowering and enabling advocacy.
Financial security for the disabled and chronically ill is critical to lifting us from a state of existing to one of living. In this state of living is where we are liberated from the burden of that necessity of sustaining stability in supporting existing, and as a result we are able to act on our ambitions to affect positive change and decision-making.
Even in our own advocacy, we are surrounded by others who are in a position of privilege relative to the broader disabled and chronically ill community - and so it is not uncommon for us, like any group of privilege, to become numb to it over time. In our case, being surrounded and inhabited by ambition can obscure our ability to recognise the role that the absence of it plays in further disenfranchising the communities we are accountable to.
We are a huge community, 10 million people strong in Australia. Despite this, so few of us are ever able to live a life that breaks from a cycle of merely satisfying the needs of sustaining our day-to-day existence - not because we aren’t ambitious, but because we can’t afford to be.
*Citations - Australian Institute of Health and Welfare, People with disability in Australia, last updated 2 October 2020, <https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability>, and Goodman N., Morris M., Morris Z., McGarity S., The National Disability Institute, The Extra Costs of Living with a Disability in the U.S. - Resetting the Policy Table, published October 2020 by the National Disability Institute, <https://www.nationaldisabilityinstitute.org/wp-content/uploads/2020/10/extra-costs-living-with-disability-brief.pdf>