An immoral economy?
Preface: Felix Alvarez OBE, Chair, Equality Rights Group/Action on Poverty
We should, perhaps, be renaming this article ‘In Our Opinion’. As Chair of Equality Rights Group/Action on Poverty, my words here are a mere preface and a handshake in solidarity. It is the expert and lived experience of both Matthew Turnock, coordinating as he does on our Committee on broad disability issues where he legitimately holds expertise and lived experience, and Victoria Bula specialising on questions related to autism and learning which top any that I could justifiably offer. It is a basic tenet of respect for the veracity and long-maintained commitments they both represent that commands attention; speaking as they do, not only from within knowledge but, importantly, from the heart.
As ERG/AOP Coordinators on the issues below, the substantive revindications that follow marry the economic with the moral issues that confront our society when it comes to questions of right and democratic treatment. Alongside it, it is this intersection between what is just and what is structurable that exercises me in practically every direction that I am required to reflect upon.
There is therefore no better lesson than a listening ear. In the work with our poverty-focused project, there is much that we all open to in our discovery of the variegated facets to discrimination and poverty and the rolling out of practical policy and life in community. It is a constantly evolving discovery that here starts at the dedicated project level (AOP) but which grows exponentially. The more we understand, the more we see; and vice-versa.
At ERG/AOP we are currently studying the state of affairs mirrored below in relation to Gibraltar’s obligations under the European Convention on Human Rights and normative requirements therein. It is a challenge we believe Gibraltar needs to face. It’s one we would welcome facing together, along with government and its institutions generally. The routine over-reliance by the State on the charity sector in delivering its fundamental responsibilities cannot go unanswered or unattended much longer.
It’s a simplistic economic model that’s wearing thin.
The underside to discrimination
Matthew Turnock, Disability Coordinator:
The most vulnerable in our society are suffering unduly during these hard economic times. It is a question that, though we often gloss over, we really ought to bring to mind more readily. Not in some corner marked ‘special cases’ but as part of the mainstream concern for all citizens deserving of equal and right treatment. There’s no doubt at all that the majority of our people is sensitive to unfairness and want to do well by the vulnerable, but yet it is true to say that there is still a need to raise awareness of how disability can and does happen to anybody (and at any unannounced point in life). It is all too easy, in the madding crowd, to overlook a painful reality: that most disabled people in Gibraltar today are still living below any reasonable definition of the poverty line. An irony, given that the Chief Minister frequently reminds us that Gibraltar stands as one of the world’s richest economies; and yet, in contradiction to the majority of developed countries, government refuses to assign a definition of ‘poverty’. Without a line, conveniently, there’s no question, you might feel.
Given the low levels of social security and assistance available in Gibraltar, it is simply impossible to make ends meet; and yet disabled people still endure a woeful scarcity of statutory rights. Gibraltar is trailing almost two decades in fully implementing the United Nations Convention for the Rights of the Disabled, an international law paramount for giving the disabled and vulnerable some semblance of dignity and respect. The absence of firm legal rights in this regard in Gibraltar means that our disabled community must always be beholden, third-class citizen cap in hand, to the minister of the day; regardless of which party may be in power. This injustice has been ongoing for many decades and yet today it is scandalous and possibly negligent that there is still no effective social safety net. Disabled individuals continue to exist on handouts and dependence on others despite the many promises of administrations to put this into statute.
At ground level, I can cite my own experience: over the past eight years I have personally been assigned no less than 104 different carers, with everything which that implies for continuity and standard of care; and with individuals often working on a minimum wage. We all know that you get what you pay for, and my care has been the bare minimum and inconsistent to say the very least because, there is no doubt in my mind, the focus of private care companies is primarily on profit. It is in the nature of business that it should be so. To remedy this situation, a truly independent Care Quality Commission (CQC) is desperately needed to finally put care with a capital C at the top of the list; libertarian profit motive is an uneasy partner when standards of care need to be guaranteed. Such a watchdog would independently advocate and ensure that proper training and quality are controlled and upheld.
Despite the promises that have been made, why have governments still not put such necessary machinery in place? Money is too often the answer, but yet never for the disabled person themself, the one too often existing on meagre handouts; a contrast to the thriving profitability of contracted business in the sector. Given, we understand, allocated public funding of over £4,000,000 per annum for home care services alone (see pages 240-41, Government of Gibraltar Estimates 2022/2023), how can businesses be permitted to earn large profits from public funds in this very sensitive area without open, independent oversight and assessment each year? A minimum of public transparency would be decent.
The true cost of disability to Gibraltar is nothing if not consequential; and not only in terms of long-term care for persons directly affected themselves. Penny pinching at these levels of crucial social responsibility can only result in increased anxiety, mental and physical illness over time, adding yet more to care costs; costs that must cover not only the disabled and vulnerable but their close family carers whose impacted lives must also be dedicated to their attention. These stresses are greatly compounded in persons with disability who already have their own serious issues to deal with while trying desperately to live a fulfilled and useful life.
Ultimately our society will be judged on how we treat our most vulnerable, yet we are failing in our most basic obligations to them. After so many years of slow tactics, could these anonymous, bureaucratic, and heartless experts living in their ivory towers actually themselves eke out a living on £110 per week disability benefit? This meagre donation is handed out with no hope, no future, and no statutory rights. This scenario is not new. It has been raised for discussion many times, and particularly by Action on Poverty (AOP) since 2019, but the administrative appetite for a solution fails; and delays always have a habit of snaking in.
The autism conundrum
Victoria Bula, Autism & Learning Coordinator
When autism unsuspectingly lands on a child’s doorstep, frightened and worried parents need the comfort of clarity and support to help them through on their journey. Autism, in itself, can be a confusing life condition. And yet, for a range of reasons, past and present, satisfactory management of the experience has not always been common for many of us in Gibraltar. Instead, making your way through the undergrowth of technical questions and the knot of, at times, differing competences encountered along the way within the system (and mostly on your own) does not help.
While some of the confusion and difficulty is a direct reflection of the intricacy of the very condition itself, much of the suffering has often arisen from structural, systemic failures in reliably delivering a framework fit for purpose. The latter falls within the purview of professional medical competence, but all too often has been assumed politically. It has yet to be seen whether a recent mitigating restructure of the health service will alter this state of affairs – or not.
In the age of Google, it’s not impossible for concerned, responsible parents to compare best practices in places elsewhere; only to find that our local experience falls far short. It does not help, for instance, when you encounter confusion in identifying the professionals responsible for the methods and policies operated in Gibraltar in the treatment of the spectrum that is autism. What, for example, are the criteria implemented for the diagnostic tests to determine the type and severity of the condition, with its necessary referral plan, prognosis and management? This is after all, crucial stuff for your child and their future. As a parent you should be embraced, not pushed away.
Getting straightforward answers to what should be easy and up-front treatment guidance should not be convoluted. Entangled systems and approaches turn the relationship between health service and the individual patient and family sour, less than happy. The patient and system should not be enemies, but partners in a mutual path forward. It can be so: an unmitigated core, rooted in the management of a health-centred portfolio directed by medical professionals can bring clarity to a very confusing present scenario, relieving tensions and anxieties. That both the Education and Equality wings of government can and should interface in their specific domains is unquestioned. However, this should not blur or impede clear competences without which patients are lost in the maze of differing administrative territories which only lead to confusion, worry, anxiety and complications that individuals and families frequently encounter.
We very much look forward to sincere and positive dialogue with Prof. Patrick Geoghegan, Director General, GHA, and firmly believe that working together on establishing ways forward in dialogue is to the community’s benefit.
And as for civil society, we have responsibilities too: mental health, disability and social advancement organisations need to align our collective efforts to coordinate in a single direction: progress.