Independence is not the Same as Isolation: Political Experiences of People with Learning Disabilities/Difficulties

The Conservative government have seen a marked decrease in the support and services available to people with learning disabilities/difficulties.

The years of the Coalition government and, from 2015, the Conservative government have seen a marked decrease in the support and services available to people with learning disabilities/difficulties. I would argue that this decrease is a deliberate attack on disabled people’s rights, welfare and access to necessary support. That is not to excuse policies from previous years, some of which have undoubtedly contributed to the shift in understanding of the social model of disability. The social model of disability would suggest that people are disabled by their society. As such, an individual may require additional support from others, in order to navigate (and attack) these barriers and live an ‘independent life’. Here, independence is offered through support, but, too often, the government have used the cover of offering ‘independence’ to withdraw support.

As someone who works with people with learning disabilities/difficulties, I have seen how this has isolated both those seen as having high support needs and those seen as having the least support needs, from whom support is withdrawn as they are expected to find employment which is not adequate for their needs. However, the experience of these policies, especially when experienced as the result of political decisions that have affected others the same way as you, have politicising people with learning disabilities/difficulties. This has resulted in advocacy groups going beyond merely defensive struggles to reevaluate what genuine independence might mean and whether a Labour Party genuinely remodelled on compassion and hope might be able to help deliver it.

Speaking as a non-disabled person, and as someone who works to support, advocate for, and support self-advocacy by, people with learning disabilities, it is important for me to insist from the start that these are my opinions alone. They are, of course, influenced by the people I work with and support. However, I am making no claim to be a voice for adults with learning disabilities, only to speak as a professional who works closely with disabled people. All the language I use here is language that people I support use: I know that some prefer difficulties to disabilities when discussing learning disabilities/difficulties. I will use ‘people with LD/D’ as abbreviation here to cover that.

Changes to Support and their Effects

This shift in understanding of the social model of disability is signalled in significant changes in language. This can be seen most clearly in the recent change of the benefit Disability Living Allowance (DLA) to Personal Independence Payment (PIP). DLA, one of the main benefits accessed by people with LD/D, loses its emphasis on ‘living’ and picks up a reference to ‘independence’ (this of course should not excuse the semantic violence of a ‘living allowance’). Although it would be very difficult to argue that a disabled person should not live an ‘independent life’, what this means has been a point of contention for disabled people for a long time.

This semantic change is matched by policy as the state withdraws its support under the justification that too much support leads to a dependency that is counterproductive for a disabled person’s quality of life. For example, those who previously thought at least one stress was removed thanks to a long-term award of DLA (meaning years could pass without needing to submit to unnecessary reassessment) are now facing mandatory reassessment. They are “invited” to claim Personal Independence Payment as DLA comes to the end of its life. Reductions in benefit awards have been widespread. The cracks extend as specialist services evaporate, and people are encouraged to take the delightful and uplifting road of employment in order to support themselves. Despair is often the immediate response from the people I work with.

I work with, and support, people experiencing two quite distinct poles of disempowerment under this government’s unique version of ‘independence’: people who are thought to have high support needs and those who are thought to need least support. Although for those deemed by the state to have ‘higher support needs’, financial support is made available, as the world continues to view those with ‘more severe’ LD/D as surplus to requirement within the ‘mainstream’ community, this financial support remains closely managed. Offered usually with strict parameters, the forthcoming state support for those with ‘more severe’ LD/D does little to encourage the development of that so desired ‘independent life’.

Although people access regular services and activities (those that are left standing), they have little variation, meaning people with these support needs remain marked and separate from ‘mainstream’ society. For those thought of as needing the least support, services are rarely available and the welfare income received is barely enough to sustain any quality of life. Any additional finances needs to come from employment. Currently, only 6% of people with LD/D who are known to social services have some kind of paid work. However, employment of course is not always the key; accessible support is quickly melting away and treatment within workplaces remains often denigrating and generally poor.

This is the case for one man I work with regularly. The state is satisfied that his support requirements are minimal to none existent. He finds himself now largely ineligible for support from the local authority or indeed from the third sector, and so lives the life he was encouraged to live as someone with a ‘mild learning disability’: he went to college year after year, repeating courses, before finding work through interactions with a charity working with people with LD/D, which is not an uncommon route into employment for people with LD/D. However, along with the majority of that 6%, this person’s work is infrequent and ‘flexible’. He summed up his, and many others’, situation by saying, “independence is not the same as being isolated”. This is not a unique situation. As services are withdrawn, the bludgeoning violence of a despair induced by a seemingly rolling program of welfare reform, is widening its reach.

Political Resistance

After seven years of directed and active immiseration (welfare reform, rises in disability hate crime, social and health care crises), I am seeing more and more people with LD/D connecting that these changes, punctuated by the brown DWP envelope, are the result of concrete political decisions. People see these barriers for what they are: a combined and coordinated set of violences.

The cracks within which people are allowed to slip can also be fertile ground for resistance and response. Self-advocacy and campaigning work, ‘speaking up’ groups, are developing. These groups of people coming together and sharing their experiences of closed doors, impatient professionals, toilet-less Jobcentres, aggressive letters and so much more is a site for some hope. There is always power in the expression of grievances and in the recognition that the injustice and violence you have endured alone for so long has been shared by others. These are the experiences people report to me often. When each speaking up group sees another person reporting a personal variation on the themes explored above, being denied support, struggling with money, services not accepting them, and so on, the sadness felt can become mundane. However, when this sadness and despair becomes the norm, it can, after a while, stop being bludgeoning and become a basis for response. Groups now are alive with these responses.

The responses are varied and focused on empowerment: working with local authority mental health services to improve the accessibility of their services; training local authority housing staff in understanding the complexities of LD/D; supporting each other with various interactions with the state; developing workshops around disabled people’s rights; reaching out to organisations led and managed by disabled people to work in partnership and to learn from each other.
In the areas that my work covers (mainly boroughs of west and central-west London), more people appear to be prioritising self-advocacy and campaigning sessions. The development of these spaces, spaces that are increasingly led by people with LD/D, is crucial. These are spaces where conversations about rights are unfiltered by conventional understandings of what it means to be a person with LD/D: sexuality, relationships and socialising, for example, have so long been a terrain of repression for people with LD/D. Instead now, we see discussion of these topics in a different way.

People are also joining the dots between the different sites of struggle they face as people with LD/D. The fact that someone has lived for 35 years through people disproving of, and actively discouraging, any mention of romantic relationships is born, of course, of the same mind-set that creates a punitive welfare system. These are important issues in articulating the fact that people with LD/D are consistently faced with challenges to living what could meaningfully be considered an ‘independent life’, in spite of professions to this being the ultimate aim. Existence is passable for a person with LD/D: money from benefits can be just enough to cover necessary outgoings but little or nothing else; relationships can be friendly and jovial but ultimately surface and shallow. Anything beyond existence - for example, a nourishing set of romantic and platonic relationships, or spending money on things one might enjoy doing, is seen as extravagant and undeserved.

My role in this is complicated: offering any needed support whilst also not being overbearing. The process of offering ‘good’ support to people with LD/D is an ever-moving process, centred on evaluating and re-evaluating. What I can say is that (I hope!) people have begun to take on ‘bad’ support - telling myself and others to take a step back or do something differently. This is an experience for me that denotes an ongoing shift in people’s attitudes to their own rights as disabled people.

Whilst this is a personal anecdote of that attitudinal shift, it is apparent in many other ways. The readiness of people I support to take risks - protesting and demonstrating against the PIP reforms through to directly complaining when a care or support provider has failed to do its job - is seemingly ever increasing. These risks have felt increasingly necessary in recent times, and especially because people with LD/D are so used to being either invisible or misrepresented in popular culture and Politics. The number of disabled MPs is minute (4 as of May 2015) and local authority representatives are only slightly more representative. ‘Who will speak for us when they never even come to listen to us?’ is the main question I hear leveled at Westminster based Politics, and even local Politics. Inaccessibility flows, too, into the polling booths themselves. People I work with have told me of waiting for over an hour before receiving any assistance. Many people do not even go so far as the polling booth any more after previous bad experiences.

A Kinder, Gentler Politics

In this context, then, it is certainly interesting for me to see the attention given to Corbyn’s edition of the Labour Party from those people who I work with. The manifesto has been met with a fair amount of enthusiasm. The move the party has tried to make even simply to disengage with some of the hardest language used around benefits and welfare is welcomed. Talk of housing, social care and the NHS is well received, too. Whilst skepticism is far from gone, there is an undeniable piquing of interest.

Questions remain: one person this week said that they believe the good intentions but will remain pretty unconvinced until disabled people are mentioned as more than a side note. When an incumbent MP came to the group two weeks ago, he was told that whilst the commitment to new council housing was welcome, there needed to be commitments on a good percentage being made accessible and adaptable.

At this point in time, transforming the state feels as important as building alternative and autonomous spaces outside of it. I struggle to see a world where the people I am working with stop questioning party politics. However, it seems as if that is far from a bad thing. It certainly says to me that Corbyn’s campaign has shifted attitudes for some. As such, my experience would say that it follows that a language that allows empathy and compassion to take a prominent role is appealing to people I work with. I suppose that piecing together the way I encourage people to work is an idea of some kind of radical empathy and care. Offering support is about consistently reevaluating what is needed, where it is needed and why. What barriers need to be faced before support and care can become properly affective and empowering? What is most encouraging then, to me, is that people are starting to feel as if the Labour Party has some realisation that within an ideology of compassion and support are some kernels of real hope.