HIV/AIDS…..the forgotten disability.
November, like rosemary, is for remembrance….
Life ‘s shot through with death’s coarse thread. It weaves its way into our reality until eventually it becomes our reality.
Lest we forget, it’s the office of remembrance to remind us that no matter how great or glorious we appear sunlit we’re destined to share the dark’s anonymity. Such immortality we own rests upon that certain understanding of our place in time. For, as we stand on the shoulders of giants, so, we each also add our life experience to Evolution’s progress….that makes each of us capable of making a difference that matters.
It’s a personal responsibility we mustn’t shirk.
There is a community of us long-term survivors of HIV/AIDS. We have learned much – not least from our survival against the odds. We’ve learned that in fighting for rights and recognition for sufferers we also give rights and recognition to others…whether well or chronically sick…black or white…man or woman…straight or gay….in the UK or beyond its borders.
The reason to fight for justice for those survivors is so that other survivors won’t need to have this fight. And if there’s one thing our small community of survivors is good at, it is fighting for rights denied.
Many HIV/AIDS survivors battle with physical and mental health issues. There is tiredness and often depression as well as pain and incontinence. As a group we are particularly vulnerable to stress. As a group our bodies have been aged by the virus. As a group we still volunteer to help HIV research. We often support each other…friends to friends, partners to partners. We hospital visit; we clean and cook and shop for those of our friends who from time to time can’t do this for themselves.
These kindnesses could make a long list…let’s simply say like the Good Samaritan we don’t pass by on the other side….but society isn’t always a Good Samaritan in return….
Recent changes in Welfare and recent changes in the NHS have made the lives of those long term HIV/AIDS survivors unnecessarily and unfairly worse. The assumption is that the protease inhibitor is a cure all…and that those with HIV are easily fitted to work and to living as normal. Neither of these is simply true…HIV is more complicated than this superficial assumption allows…but it is wholly untrue of long term survivors who only reached protease inhibitors after a decade of other treatments and have often had at least one near fatal illness.
Nor can a single tablet and a few weeks of CBT(Cognitive Behaviour Therapy) put to rights what maybe fifteen years of living close to death and in deep anxiety about personal health has put wrong. And that is without taking any account of the shingles, diarrhoea, urinary infections and skin eruptions and other commonplace aspects of poor health that accompany one’s daily life. And all those take no account of steroids used to treat cancers or viral conditions; the kidney and liver dysfunction caused both by HIV and medications used to treat it and the premature aging caused by the virus. Being able to walk to a Sainsbury to do your own shopping doesn’t mean you are able to live normally. Many of us have lived so long below the par of normal that for us it is the only normal we can recognise. In order to qualify as disabled surely it isn’t necessary first to die?
The very fact this point needs to be made illustrates the toxic reach of this perversion of our ethics.
But that is precisely what seems to be lurking behind the ‘reforms’ upon which this government and to some extent its predecessor have embarked. If politicians lack the eloquence to find words to persuade their fellow citizens to their duty of compassion then markedly our politicians have failed us all.
As for those who use the disabilities of others as a code for fecklessness they do only themselves a disservice. Since in so stigmatising others they merely provide an eloquent commentary on their own failings. Never forget it was politicians who deliberately used the system of sickness benefit to hide the real levels of unemployment from the electorate. And like the bankers they now presume to lecture those against whom they’ve most offended….
And the tax breaks; the hidden benefits in pensions schemes for the better off; the internships cosily traded between the well connected and the wealthy; the private education that purchases a better future; the charitable status of private schools; the private health insurance provided with salary; the bonuses that self-justifyingly feed upon themselves; the golden hellos and the even more golden handshakes that say goodbye…all these perks exist at the expense of the poorest. Their costs are effectively subsidised whilst their true value is hidden from the public…
It is not fair or just; it is just unfair.
We look at the Arab Spring and speak warmly of the virtues of democracy and social solidarity….but look at what we’ve made of welfare, public education, the National Health Service and now disability discrimination.
By their fruits shall you know them?
Look about at the world our bankers and politicians have wrought from consumerism, selfishness and a generation of trickle-down economics. We are not here by accident. We are here by intentional greed and by an appeal to our worst instincts for selfishness.
The great medieval cathedrals and the welfare state were not built by appeals to the selfish or the deification of individual rapacity… though those common vices have been known to mankind since the beginning.
We have always made our best choices by working together and it is a distortion of market-economics to pretend this culture of reward enshrining ever greater disparities in wealth is a prerequisite to prosperity for all…for the rich surely know no better than the poor how to spend their money well….
And were such gross inequities essential then it might be said that the most ancient civilisations built upon war and slavery knew as much as we do of economics.
But we may choose otherwise and in so choosing we may make this a better place for the next generation than we’ve made for this generation of young unemployed.
Is this some way from HIV/AIDS and remembrance of our obligations to the sick?
So it may seem…but how can we put right the wrongs we do the sick when we are blinded by the greater systemic wrongs falsely done in the name of market economics?
We sneer at the Chinese for their market society that lacks democratic accountability but when was the last time we made democracy really count? There’s a constant chorus of complaint of a benefits culture…but we’ve created a social welfare culture that aptly reflects upon the values of the wider society. It ill behoves us to talk of the big society when the society in which we live is choked by sycophancy for celebrity; obsessed by cultural vulgarity; characterised by showy intellectual vanity and corrupted by abuses of money and power. Is it any wonder we are so mean spirited and small minded and so bereft of social conscience?
How will we ever hear the voice of the sick and disabled when we’ve allowed ourselves to be mesmerised by such implausible cheap tricks?