I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for these designations was to initiate a greater global focus on the rights and equal opportunities of disabled people so they could play as full a role in their families, communities and workplaces as their non-disabled peers.
Coupled with the supports and protections of the welfare state, the intentions were to bring to an end the kind of blatant discrimination and exclusion which in previous generations saw disabled people institutionalised and largely absent from public life.
You would be forgiven for thinking, therefore, that I, a lifelong wheelchair user, was born into a charmed era for rapid advances in disability equality, which is certainly true in part. The means to be educated, work, live independently and build a family life are all rights hard won by those who have gone before me, which I do not take for granted.
Which is why, now, in the climate of crushing pressures on public spending and a persistent and insidious narrative of “scroungers”, I, and many others, in our community feel that we must speak about the reality of our lives today.
We are living in a hostile environment where the rights and protections we collectively worked so tirelessly to enjoy are being quietly eroded behind closed doors.
It would be plausible to blame the unfortunate necessity of “balancing the books”. I believe this explanation is surface level at best. It perpetuates the idea that the situation we find ourselves in is inevitable. I don’t believe it has to be this way. I would contest that we find ourselves here because of a series of decisions on how we fund, value and deliver vital services. That being the case, it is possible at any time, to make different decisions. Starting, at the core, with how we view disability itself.
One of the most damaging consequences of the language of scarcity is the idea that providing for disabled people is a “burden”, which has become so commonplace and paints a vivid picture of those of us with disabilities as nothing more than societal drains. It creates an environment where people like me are forced to battle daily for our most basic needs let alone anything beyond mere survival. We are in a situation where the long held ideals of choice, control and autonomy over our lives are replaced with one brutal assessment after another in which we must justify our need for care, support or meagre financial assistance.
We are placed on a perpetual hamster wheel where we must justify why our most fundamental needs such as the ability to get out of bed, wash and dress ourselves should be supported by the state. We plead our case to professionals, to whom we are forced to disclose the most intimate details of our lives often upon the first and only time of meeting them. Then, this stranger, who themselves once entered public service to help and support their fellow citizens but who now suffers the kind of compassion fatigue which seems inherent in our systems and services, will decide if we are worthy of time, care and money.
These assessments of our lives are degrading and utterly demoralising in a way that is difficult to convey unless you are experiencing it first-hand. Within them are imbalances of power where disabled people are given small windows of opportunity, to explain the complexity of a life boiled down to nothing more than a description of the ways in which we are deficient and in need of handouts.
Disabled people are more than this. We are not simply the ‘service users’ or ‘cases’ we are reduced to. We are individuals with skills, talents and life experiences filled with the kinds of ingenuity and adaptability which are essential attributes when living with a disability in a still inaccessible world. Our human rights to safety, stability and the choice over how we live our lives are more than dry and burdensome obligations which must be grudgingly met; they are an opportunity to bring a richness of talent and expertise to bear in meeting the challenges we face nationally and globally. Until disability is seen as a rich and useful facet of human experience and not as an individual deficiency, this cannot happen. The person with the insight into how to tackle some of the critical social or environmental issues today may already exist but be trapped in a system which deprives them of the choice over when to use the toilet let alone share their knowledge.
I still believe in the utopian accessible future I was promised. However, much like the rights we spent so long carving out, it won’t happen by accident. We must work for it and resist the idea that where we are now is the best we can hope for. First though, we must decide that the lives and aspirations of disabled people are worth the fight.
Susan McKinstery works for an LGBT+ mental health project and, as a lifelong wheelchair user, campaigns with Glasgow Disability Alliance.
This report is part of #JustSurviving – a collaboration between HuffPost UK and investigative journalism platform The Ferret looking at the impact of the government’s austerity policy in Scotland.