Remembering the light

Small pinpoints of light in blue, purple and pink which emanate from fibres or wires shine against a darker background. Image: "Stop the Light" by Mato Rachela licenced for use under CC BY-SA 3.0 from Wikimedia Commons

Please note that the following post involves candid discussion of grief, and the current UK situation for disabled people. Some links click through to discussions of DWP-related suicide. It ends lighter than it begins, but readers should be warned.

I have been feeling weary lately. My body is moving more heavily than usual, my pain levels are up and my inability to regulate temperature has reminded me that my body manages homeostasis like a lizard. When I am tired, I am more emotional. When I am more emotional, I am more tired. I am at the eighteen-month mark of the PhD. I can feel the pressure shift up a gear, but it’s already proving useful for making progress. My mother’s birthday is very soon; and the anniversary of her death six weeks after that, almost to the day. Daffodils and sunshine and the world turning and twisting and splitting in two. The funeral was a month later. It’s tough organising a funeral for an unexpected death, for your mother’s unexpected death, at all, ever, and when you’re chronically ill. I say this because I feel I have to justify the long interval. Maybe I just need to say it because if I don’t, the connection between health and capacity and “that’s just life” might not be absolutely clear, so you might misunderstand. I am probably too sensitive to judgement. I think this gets worse when the grief spikes and hums. I am learning that this is what the grief does at times like these.

If time gives rise to feeling, space does too. Within the United Kingdom, we are witnessing an unprecedented rolling back of disabled people’s rights and of public and state services and mechanisms put in place to support disabled citizens to lead independent lives. The litany of policies intended to “reform” support for disabled people is extensive, and the cuts are deep. This includes the privatisation of the NHS, to the introduction of the Bedroom Tax, the change of Disability Living Allowance (a non-means-tested “benefit” designed to pay for additional care and mobility costs arising from living with disability) to Personal Independence Payments (PIP) with a stated aim of a 20% reduction on welfare spending, the closure of ILF and transfer of responsibility for funding care and mobility needs for those with the most severe impairments to local authorities who themselves are facing budget cuts as high as 70%. Over the weekend, the press reported that the Chancellor of the Exchequer, George Osborne, was going to announce fresh changes to the PIP assessment criteria, halving the points available for being unable to complete basic activities without aids or assistance. For some this reduction in points will mean that recipients get less money; for many others, it will mean that they stop being recipients at all.[1] This was just after Government reduced the amount of money paid to sick and disabled people who are currently unable to work by nearly 29%, a £1500 annual reduction on Employment Support Allowance. On the same day a £1000 pay-rise for MP’s for the next fiscal year, starting this April, was announced. That night, I felt heavy, having spent three years caught up in applications and appeals and tribunals for DLA and PIP. This was even though I am not reliant on ESA thanks to my PhD funding (though it is nevertheless true that my doing a PhD has been used by the DWP as evidence against the extent of my disability). I wondered if it was just me, but then I wondered what must happen to the air when 500,000 disabled recipients of PIP and their support networks collectively sigh through even more nausea and disbelief.

Jenny Morris is right when she argues that disabled people’s membership of the political community – their citizenship – is now substantially undermined by Government policies and rhetoric. The United Nations has undertaken an inquiry to investigate the violations of disabled people’s rights in the UK by Government policy although the findings will not be released until 2017 which many believe will be too late.

People are dying. People have already died. More people will die.

Yet this, we are told, is progress, and fairness, and justice. This, in the words of a no-claims injuries lawyer’s commercial, is what justice feels like. Justice feels like a polity where disabled people are brought to heel for merely existing, and for failing to fulfil the standard conception of a Hard Working Citizen. The world, the news, our Government, would have us believe that disabled people are not Hard Workers, while they share videos and coo over the humanity of those who deign to take a moment to assist disabled persons, meanwhile ever so slightly grimacing over their shoulders at us with pity. The world would have us work to exist, but then removes the means that support us into work and into economic transactions with those who have built financial stability around providing that support.

It makes no sense. I cannot make sense of it. There are ways of making sense of it, but they are terrifying.

Whether I intend it or not, thoughts of my mother abound. I am still learning to remember beyond the trauma of her death and the events that followed. I am trying to remember the times we laughed, and the things that captured her in moments when she was most herself. My mother navigated through her own and other people’s chronic ill health and trauma for her entire life. I know that this caused her to experience years without adequate support while being called upon by others to support them, care for them. She never begrudged them this, although it took its toll on her. Sometimes I felt so bad that on top of all of the other things, I was disabled, and that I needed so much from her to live a semblance of independent life, striving for something or other. She would chastise me whenever I told her this, and insist I not think it. She was a wonderful mother. I am incredibly lucky to have been her daughter. I am lucky because she taught me that joy is necessary for survival; that laughter is necessary for healing; that connecting with ourselves and each other is necessary for making it through this river of shit intact; and that even in the darkest depths, we need only acknowledge our own possibility for lightness, for levity, and for brilliance. This is how she thought we would find the tools we need to make it through.

I think she was right.

Sometimes it is easy to forget to perceive the light under the weight of the dark. But sometimes the only way to ease ourselves through weariness and its discomforts is by remembering to seek that which is light.

I was reminded of this when a dear friend of mine and my mother’s instructed me to seek what nourishes me, and set aside what depletes me for another time, or another state of mind. Light is nourishing. Light is partly how we survive.

In the midst of much that is difficult and awful, for disabled people in the UK and elsewhere, I wonder where we might find the light.

And so I switch gears again, back to the arena of what PhDisabled is usually concerned with to ask: What good things do exist for disabled and chronically ill people in higher education?

I orient my question here not because suggestions of what good things exist for disabled people more generally than the remit of disability and chronic illness in higher education are unwelcome. Rather, I start here because sometimes reorientation is easiest starting from some place rather than no place in particular.

And one of the things about this place is that it represents a set of interlocking national institutions with substantial influence over the day to day experiences of a significant number of people, some of whom are currently or will in future be involved with policy-making, cultural production, journalism, and other activities whose consequences contribute to and constitute the ongoing structuring of disabled people’s lives. For all the importance of improving the experiences of disabled people while they are in higher education, higher education represents a site where equitable and just policies, practices and norms, stand a chance of doing something, anything, to achieve broader support for recognising disabled people as full members of the moral and political community. People move through universities, on, we hope, to growth and opportunity. Disabled people ought be no different, of course.

While the reason for disabled people not being recognised as full members of our university communities might be because of the denial of this principle within the polity at large, people within universities remain able to make choices about whether to enact and reproduce such communal exclusions.[2] That many students realise this is precisely why there has been an increase in “no-platforming”, a topic that has generated reams in the national press vilifying students and claiming censure for well-paid and widely-circulated public figures. If universities are sites of collective activity channelled by institutional norms, then it is possible to redirect that activity if only institutional norms can themselves be redirected, so that people may find safety in made worlds smaller than the world we all make together even beyond these ivory walls. Such an endeavour would not be uncomplicated and unmet with resistance.[3] But that does not mean that it should not be undertaken.

So, back to the question: Do you know of best practices, great practices, that ensure equitable access to academic spaces for disabled students, or of stories or examples you have permission to share of good experiences with great responses, sensible procedures, and positive departmental climates?

Do you know of disability support staff who run spectacular training on accessible teaching and learning, or of grass-roots peer-support organisations where graduate teachers support each other to better to support their students? Do you know of student activists leading research and campaigns to learn more about how disability-specific and non-disability-specific policies are impacting the mental, emotional and physical health of students with existing and new long term impairments? Do you know of moments, or stories, where for once, things have gone right, and even amongst the usual crap solace was found, offered, and used to support survival, or perhaps even thriving?

Tell us the good things that you know, so that we might know, and so that we and others can witness ways of doing better.

Let us find the light together, just for a little while.

 Image: ‘Stop the Light’ by Mato Rachela licenced under CC BY-SA 3.0 from Wikimedia Commons.

[1] I confess, I am astonished that such an apparently economically-minded government would fail to recognise that the money that is being paid to disabled people to purchase goods and services to support their care and mobility needs is going back into an economy of service providers and retailers who one would hope would count among the “hard-working people” of Britain. Have the cuts been made in their interest?

[2] For an argument in favour of the claim that agents within morally pernicious cultures are not excused in virtue of membership of a morally pernicious culture, see Michele Moody-Adams (1994).

[3] See, for example, Sara Ahmed’s discussion in On Being Included (2012).




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