What is Charity and what are charities supposed to do?
Dictionary.com defines it as noun, plural char·i·ties.
1. generous actions or donations to aid the poor, ill, or helpless: to devote one's life to charity.
2. something given to a person or persons in need; alms: She asked for work, not charity.
3. a charitable act or work.
4. a charitable fund, foundation, or institution: He left his estate to a charity.
5. benevolent feeling, especially toward those in need or in disfavor: She looked so poor that we fed her out of charity.
All those definitions evoke the traditional responses we have to the idea of charity. A process of those giving more to those who have less, but even within the dictionary definition we can see signs of a rights based approach - "she asked for work, not charity". The British people are notoriously generous with charitable donations, partly its caused by altruism, but often its an almost Pavlovian response to scenes of poverty and distress beamed in through our television screens. For most people, doing something practical to alleviate that poverty or distress isn't possible, especially when its happening half way around the world, so to give money is a way of assuaging the guilt we all feel upon seeing starving children whilst sitting in our warm, cosy, well fed homes. Whatever the reasons, its reassuring to know that people do care about others suffering and express it in the best way they know how, by donating funds towards established, organised support schemes.
But how does it feel to be on the receiving end of charity? Particularly in the 21st century as sick or disabled people. Well, as a sick or disabled person that depends upon how eligible we are for charity. Cute disabled kiddies in need of wheelchairs do very well on a practical basis, it's something concrete to fundraise for and easy to understand for the donor. What it does to the child's long term perception of themselves and society is an entirely different matter, but there is at least a practical outcome to their need. Young men with learning disabilities and challenging behaviour are not all cute and cuddly and so do not evoke the same kind of empathetic response to their support needs, but older people going cold or hungry during the winter do.
Often when I explain to people that I am not eligible for a wheelchair or other equipment they scratch their heads and ask if the charity for my condition can't provide me with one. This attitude is so entrenched that when being refused equipment or services Occupational Therapists often suggest approaching the charity for the condition the person has. We're back to the cute kids again who have a choice of charities to help them fund wheelchairs, and if an adult is 'lucky' enough to have a condition which is supported by a wealthy, powerful charity then they too may be fortunate enough to find that charity has funds to meet their specific need. However, that is not the case for the majority of us, particularly those with conditions perceived to be rare such as Ehlers Danlos Syndrome. There are two main charities in the UK attempting to support people with EDS, but they are small, asset poor charities who can just about manage to provide some emotional support and practical advice, mostly by using volunteers. Providing equipment or emergency funds is not something small, support charities can possibly achieve.
The position of the main charities intended to support disabled people in the UK is deeply contentious amongst the population they are perceived to help. Charities have traditionally run large institutions in which horrific abuses have been perpetrated against vulnerable people. Some of these were the direct responsibility of the charities themselves who infantalised disabled people, frequently confining them to pyjamas during the day or communally owned clothing, but many were the inevitable consequence of warehousing people away from the main population, dehumanising them and opening them up to the abuses of people who thrive on controlling the powerless. This history, which in some cases is still evolving, means that there is a trust deficit between many disabled people and the organisations who purport to represent us.
The public, understandably, still assume that charities are benevolent and supportive, whilst disabled and sick people are increasingly challenging the role of the charities, particularly their determination to gain large, government contracts relating to welfare or welfare to work. This determination to keep that funding by the charities has meant that many of them did not campaign effectively against the damaging nature of the current welfare and social care cuts; certainly many disabled people believe that without the complicity of the main charities the government would not have been able to push through such a radical and damaging agenda, in the process labelling disabled people as scroungers and exaggerators.
As grassroots disability rights campaigners it has been difficult and distressing to hear reports beginning to trickle in from bewildered, desperate people who have had their benefits time limited out of existence and are left without any idea of how they'll meet their basic costs of living. We have been warning of this outcome for two years and did not expect, but did hope that the charities would wake up to the reality of sick and disabled peoples lives to put contingency plans in place. Some charities already provide excellent welfare advice services and have stepped up that work, but typically that advice is condition specific, so if you find yourself diagnosed with breast cancer there is alot of support available but be unfortunate enough to be diagnosed with an embarrassing bowel disorder and you'll whistle in the wind alone. There are small charities doing sterling work to meet basic needs, on average two foodbanks opening each week. However, this support is inaccessible to most disabled people, as is the food provided, but I'm yet to see any announcements from the main disability charities of their intention to deal with this problem.
For years disabled people have challenged this paternalistic attitude from our charities, alleging that this perpetuates our dependency and pitiable perception. Now we are reaching crisis time, the trickle of those losing the most basic state support is set to become a flood and we are yet to see charities move out of their politically correct language bubbles and into the grim reality of sick and disabled people going cold and hungry. There are specific and basic steps that charities could take, especially as this is one of the few sectors still regularly advertising work. That work could be aimed directly at sick or disabled people, working practices altered to enable us to work from home. Even the much despised workfare schemes the charities fell over themselves to receive funding for could, with a small amount of thought be used for the practical good of those the charities are meant to support. Social care is unavailable to all but the most disabled, and the charities are sitting on large pots of money intended to train sick and disabled people deemed fit for work. It doesn't take a genius to see there is an obvious, alternative route there. Who better than the charities to be aware of the unmet support needs of sick and disabled people? Who better than the charities to ascertain exactly what those support needs are? Who better than the charities to train up people in social care? Who has the funding to provide such training to the newly redefined as unemployed? Who better than those sick and disabled people who do feel able to work in such fields to provide that care to other sick and disabled people? Matching those two sets of needs together by listing who has become ineligible for social care and using the workfare funding to train carers to provide that care as they learn is a very simple, straightforward idea. There are all sorts of other simple, straightforward ideas out there but the main charities are so stuck in their paternalistic, damaging way of thinking and acting that sensible, pragmatic proposals just float off into the ether.
Whilst practicalities are probably the most pressing issue for sick and disabled people, we also need to do much more to make our voices heard at a political level. This is particularly difficult to do for a population who tend not to get out much, to find travel expensive and inaccessible and who are often too poorly to do anything. Last year we wanted to try and attend each political party's conference, aware that the most important networking and lobbying is done in chance meetings at such events. We begged, borrowed and frankly scrounged* to enable some of us to attend. It was worth it just to see the look on politicians faces as we hurtled round, Sue and I sharing my mobility scooter shouting "Austerity measures, 2 for 1, cripples now sharing mobility aids". It's much more difficult to force through ridiculous cuts when confronted with the reality, 3 feet from your nose, helpfully pointing out to the entire conference the stupidity and inevitable outcome of such policies. More seriously, the opportunity to properly challenge Ed Miliband, the leader of the Labour party came from being able to attend conference, the success of which can be measured in the result of the Labour party finally altering the damaging and demonising language they were using to describe sick and disabled people
It came up in conversation with some of the charity representatives we met that many sick and disabled people wanted to attend conference, but were prevented from doing so by the costs and their support needs. One charity is more notorious than any other amongst disabled people for the abuses perpetrated in their care homes, so it was a small glimmer of light to see that this was the same charity most concerned about doing something practical to enable the population they represent. That glimmer of light became a chink when I recently heard that they have gone on to put the plan we discussed into action and will be running a competition to fund a place at each main party conference for a disabled campaigner, as well as meeting their support costs. As Wendy Tiffin a disabled campaigner and resident in a Leonard Cheshire home said;
“Going to party conference was a great opportunity to tell the Minister for Disabled People in person about the problems faced by disabled people locally and nationally and it really boosted my confidence in my campaign work. It is important that politicians hear from disabled people directly so that their decisions are influenced by real peoples needs. This programme gives an excellent opportunity for disabled people like me to do this.”
So, if like Wendy you would like the opportunity to lobby politicians directly at their party conferences all the details of how to enter are on Leonard Cheshire's website here
This competition isn't the answer to all the problems which beset the charities, nor is it enough to make up for the past abuses of that charity, but it is a very welcome, positive step towards the long journey to charities becoming user led organisations.
I just hope that the other main charities see this and start to listen to the people they claim to support. The people the British public donate money to support. The people terrified for their futures, wondering just how they will survive next winter without adequate food, heat or shelter. The people most in need, but still furthest from the top of the charity priority list.
*I'm still very grateful to the nice car park attendant who ensured free parking for the day
