This is a transcript of a speech given by Baroness Jane Campbell at the launch of the ESRC funded programme ‘Personal assistance relationships and disabled people‘ led by Professor Tom Shakespeare
My very first experience of recruiting a personal assistant came at the age of 21, when Hertfordshire University offered me a place. It was only one of three universities that were minimally accessible to wheelchair users. And I mean very minimal!
There was no such thing as local authority Direct Payments or Personal Budgets. So I used my £30 a week DLA to pay my hall of residence cleaner, to get me up in the morning and put me to bed at night. The rest of the day, was left up to me to hussle students to make me meals, pop me on the loo and basically help me get through the days. In return, I would offer help with lecture notes, essays and steeling library books out of the back staff entrance (the only wheelchair access in/out)! I also made sure I secured a boyfriend early on who became a very willing PA, especially on the undressing in front!
Times have changed but I still look back at that time with a sense of achievement because it was perilously knife edge at times and required untold resilience. Not for the fainthearted – especially when you’re willing helper is too drunk to stand up!
Over the years there has been a PA revolution. It started at the end of the 70s, when half a dozen disabled people defiantly broke out of a residential home and persuaded the local Council to award them the money used to warehouse them, to pay for personal assistants in their own home in the community. In those days it required local authorities to launder the cash through a local voluntary organisation! Highly questionable in terms of legality. However some brave local authorities agreed. The gang of six escapees, led by John Evans, was beginning of the Disabled People’s independent living movement. A movement based on the concept of a right to choice and control over who supports you, in order to facilitate individual life chances.
The laundering approach was never going to provide a chance for all disabled people to take advantage of this new service. The negotiation and administration of setting everything up personal support was complicated and required great negotiation skills. This was liberating for a small number of elite, highly capable, physically disabled adults, but for most it was just too daunting. So the disability movement campaigned for 15 years, for direct payments to be legalised and therefore recognised as a social service duty, which we hoped would help develop the concept with the funding necessary. In 1997 the Direct Payments Act (1996) came into force.
The concept of disabled people employing, training and managing their support, has built an entire industry based on the idea of choice and control for everyone, no matter what your impairment. But all concepts have their ups and downs, especially as on size never fits all. Unhelpful power struggles of who should inform and run the PA industry, inevitably spawned friction between disabled people and the so-called ‘care professionals’ (Local Authorities, traditional charities or private sector agencies. It wasn’t long before these bodies muscled in, fearing their power and livelihoods were in jeopardy. This continues today.
As you will read in the PA Research – For many disabled people, PA’s can indeed give you the choice and control over the assistance you need to live in the same way that others do. It means that many disabled people can go out to work, look after their children, play a part in their family and community.
It means a young disabled person can realise their potential, get the education and qualifications they are capable of. It means a person who becomes disabled half way through their life can return to work and continue their life goals however small or large.
But for others, managing PAs, remains too daunting. Taking responsibility for recruiting, training and managing PAs is no small feat. We are not born HR professionals. So advocacy, peer support, training and decent funding to become a good, legal employer is essential. Choice and control over one’s life does not come cheap when you are disabled. Countless barriers in society, sometimes require costly solutions.
And then there is the relationship to be fostered between 2 people who are thrown together in one home. There can be some difficult relationships to manage – unhappy underpaid PAs, endless paperwork, fraught dealings with social workers and depleted funding are but a few possible challenges in this unique setup.
Over the years, the disabled People’s Independent Living Movement have strived to develop personal assistance policy and practice, so that all disabled people with different needs have access to this form of choice and control. From 2001 – 2010, Centres the Independent run by disabled people, set up information, advocacy, training and peer support services – to ensure disabled people were supported in this new role. Thousands of disabled people including people with learning disabilities began to take advantage of directly managing their own day to day support. Local authority grants for Centres Independent Living, the government funded ILF and local authority PA social worker posts, all helped to build something worthwhile.
And then came the crash! Austerity. Closure of the Independent Living Fund, CIL funding cut, rising numbers of disabled people and a political ideological to shrink the state – combine together, severely damaged the whole concept of a Personal Assistants and Independent Living.
With support budgets being cut to the quick, disabled people are now struggling to exercise choice and control because they are forced to offer low wages, fewer hours and the atmosphere of liberation becomes one of irritated despair and unhappiness on the part of the PA.
For the first time since the gang of six broke out of residential care, disabled people face the horrific possibility of returning to the warehouse. We become judged solely on short term economic unit costs, rather than the service being measures against Article 19 (a right to independent living) of the UN Convention on the Rights of Disabled People.
What most people, especially governments, do not understand, is that the culture surrounding personal assistant independent living services, enrich communities and society and have a cost benefit. Having PAs is not just about furthering one’s own life chances but more importantly furthering the lives of people with whom we share our lives – family, friends, the community. Personal assistants are at the epicentre of this concept. It must continue to be developed as a culture of dynamic mutuality and sharing.
Reciprocity is one of the most important hallmarks of independent living. It swings between the individual’s life chances and ones collective desire and responsibility to contribute to making society a better place. That way we are not the “cared for” client” and the PA is not a low-grade servant, we are experts in the situation of mutuality and coproduction. This research will help us understand that relationship better and work together to ensure we do not lose it!