Politics

TW: ableism, inaccessibility, police

“Why are you defending Owen Jones?” he asked, with a look of derision. (Well, it may not have been those exact words, but it was to that effect.)

I was at the Tolpuddle Martyrs Festival, and one of my fellow campers was knocking Owen Jones: “He doesn’t turn up to events to back up the things he writes about, so he clearly doesn’t really care”.

What had I said?

Again, I can’t remember my exact words (probably wouldn’t be able to even without ME-related poor memory), but I can summarise it: not turning up to things doesn’t mean that someone doesn’t care, and valuing physical presence over and above other forms of participation is a very ableist thing to do, especially when so many demos, actions, etc are as inaccessible as they are today. (So not so much defending Owen Jones, as critiquing the argument made against him, really…)

Often, people dress it up as anti-intellectualism. (Or, rather, this is the side which I’ve encountered most often, because of what I myself can and cannot do.) That by being physically active we are taking fights “to the people” more than by writing. But it just creates a different elite – or, rather, reinforces an existing one – abled people. And, lest we forget, some of “the people” are disabled.

(Ironically, some of the same people who accuse me of not doing my bit to combat the reinforcement of intellectual elites seem to be the same people who think I need to have read a lot of specific, sometimes quite long texts in order to have a well-thought-out and well-articulated political stance. (My eye muscles are some of my worst-affected muscles, so on lots of days I cannot read for more than half an hour without losing the ability to focus properly. Therefore headaches. And not actually being able to see the words on the page properly. That too.))

Less subtle is the term “armchair activist”, given to those, who tweet or whatever about things rather than, you know, actually turning up. I can only reiterate: the presumption that people only care if they are somewhere physically is ableist. Probably this is most obviously ableist against people with physical disabilities, but a lot of political activities can also put strain on our psychological resources, so it discriminates against plenty of people on grounds of mental health too.

(Also, as soon as police are involved, we shouldn’t forget the specific ways in which they systematically endanger and do violence (physical and psychological) to other groups – or people read as being in those groups – such as black people, or trans people.)

So, next time you even think about criticising someone for not caring because they weren’t somewhere physically, think about whether you’ve actually made any effort to make your event accessible, at all. I get that it’s difficult to make all events accessible to all people, but there are things you can do to make sure there are ways people can be involved. Making sure you use a variety of different tactics (and being open from the start that you will be doing so), for instance, is one. This way, people know that you want them to be part of a campaign, if they want to be. It’s no use saying “well, you should have turned up to tell us”. It’s not just no use: it’s totally ridiculous. Asking someone to sacrifice their health or wellbeing may well mean there is absolutely no way they can get to your next event/action. And don’t get me started on telling people they need to come to a meeting somewhere with stairs in order to have a conversation about wheelchair accessibility. I wish that was a joke.

(On this note, one simple and quick thing you can do which will immediately make any meetings you have more accessible: don’t have meetings in pubs. Not only are they very rarely wheelchair accessible, they are also very crowded and noisy places, which can be a problem for lots of different reasons. And they’re not only inaccessible on the grounds of disability: meeting in pubs normally excludes people with children from attending, and lots of addicts will also avoid them.)

This sign displayed at the entrance to a Sunderland pub at the beginning of the year is just the tip of the iceberg. Source: http://www.bbc.co.uk/news/uk-england-tyne-28547104.

This sign displayed at the entrance to a Sunderland pub at the beginning of the year is just the tip of the iceberg. Source: http://www.bbc.co.uk/news/uk-england-tyne-28547104.

Respect what disabled people do do. We do blogs, and youtube channels, and all sorts; and this often of our own accord, without the support of the organisations which are there propping up lots of abled people’s protests. My other project is making audiobooks of political texts, because I do think the way we rely on printed text is really problematic and ableist. Still mulling over how best to create some audio-zines, but I had an interesting chat with someone about that the other week, so watch this space – maybe it’ll be a collaboration! (Bearing in mind I have been well enough to commit half an hour a week to the audiobook project, you might be watching for a long time. But that’s the thing. You need to respect that that half an hour, and that the time I find every couple of months to blog, is actually quite a significant commitment for someone with very limited energy, and plenty of pain when I overstep my boundaries. Boundaries which sometimes move unexpectedly.) This is NOT “armchair activism”. This is not less valuable than being physically present. And if you say you believe in fighting for equality, but degrade my political activity this way – indeed, degrade my existence, since the very BEING of being disabled is itself a political act, in a world which demands that you are abled – then you’re going to have a hard time persuading me that that statement of belief was anything apart from hypocrisy and lie.

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Life Around and After a Death

CN: bereavement, anxiety

 

Arriving at the hospital, I went straight to reception, and asked for directions to the ward. The receptionist swiftly phoned the ward, and asked for someone to come down to escort a patient there.

Because clearly everyone arriving in a wheelchair is a patient. Hmm.

 

I’m not writing this blog to make my Mum’s death somehow about me. Rather, my hope is to take the opportunity to show the effects of disability permeate all aspects of our lives, including our experience of death(s). In a sense, I feel like this is consonant with the broader tendency, in the wake of the death of one close to us, to take stock of our own lives.

 

  1. Getting to places in emergencies

If you are requesting assistance when travelling on the UK rail network, you are meant to do so at least 24 hours before travelling. Evidently anyone who requires assistance, e.g. with carrying luggage, ramps to get on the train, and so on, never encounters emergency situations for which they need to travel at short notice. I did phone up before travelling, but ended up nearly being left on the train and travelling past my destination.

 

  1. Being more than a disability or illness

The palliative medicine team who were caring for my Mum seemed really good at doing so holistically, as a person not solely defined by her illness. I think this extended to her family (including myself) as visitors too. For instance, I had an interesting conversation about learning history with one nurse, as she was around when I sung my Mum a Red Army song I’d learnt, to show her the changes to my voice.

However, this holism was not universal. The assumption I encountered in the anecdote with which I opened this post was one repeated by other staff on other visits. I can see a (darkly) humourous side to it, but it also says worrying things about how we see disabled bodies. Being in a wheelchair was seen as defining me in such a way as to lead to the assumption that I was a patient; are people in wheelchairs incapable of being valued supporters for others? It is true that I could not help my Mum out practically in the same way as my Dad or my brother. However, our shared experience of chronic illness gave us the opportunity to offer eachother emotional support in ways which others may not have been able.

 

  1. The days when you most need to look after yourself are the days it’s hardest to do so

You can’t hobble out midway through a funeral to have a lie down. And rooms used for social time afterwards rarely have enough chairs. And if there are chairs, you may not get to them if everyone wants to talk to you. Thankfully, I had suspended my studies to move house, and then extended this suspension following my Mum’s death, so I have some time to recover before returning to work.

Days like that of the funeral are also days on which it’s difficult to keep on top of recording activity. I’ve just written it all as a red day.

 

  1. Supervisors find bereavement easier to deal with than disability

I guess this is because it’s closer to their experience, or something which has happened to other people who they’ve supervised. The response I got from my supervisors was really helpful in this instance; they did all the suspension paperwork for me after I emailed them copies of the letter from my GP and so forth. A stark contrast to the continued struggle we have in trying to organise my work in a way which works for someone with ME. It’s reinforced my view that with the right training my supervisors could be good at working with students with disabilities too: when they understand what a situation means they do what they can to help.

 

  1. I’m better at resting well when I have activities planned

Understandably, rushing between cities at short notice is not conducive to having clear plans of what one is doing and when. Also, when you know someone is going to die imminently, but not whether it will be today or tomorrow, it’s hard to limit the time you spend with them, as you don’t want to miss out. These are two circumstances which lead me to rest inadequately.

As I didn’t have any tasks which I could complete and feel a sense of accomplishment from, it was difficult to decide at a certain time to now take a break. On several days, I ended up having a lot of “relative rest”, but nothing properly rejuvenative. Both because I put it off, as I couldn’t specify neat boundaries, but also for another reason: if I haven’t “done” anything, I tend to worry, and worrying when trying to rest ends up, for me, being more tiring that finding some minimally active way of occupying myself. Understandably, when someone close is dying, or recently deceased, this potential to worry is more than usual. As situations arise, I need to continuously negotiate and renegotiate the amounts of relative and total rest I attempt to have, in order to maximise recovery and recuperation, whilst also avoiding worrying and panicking.

With this is mind, over the next weeks I am rethinking my personal timetable. At this time I think it’s particularly important that I have clearly set and delineated plans. As currently stands, my timetable was designed when I was in catered halls for a couple of months earlier this year, meaning I had to get up in time for breakfast each day. Comparing my symptoms then with the last few weeks – which are I’d say an extreme of unplanned as an emergency situation and consequences – I think this was helpful in regulating my sleep, amongst other things. So I’m going to try to have some more fixed activities again. (In the intervening couple of months I’d been slotting work etc into a set number of half hour slots each day.)

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T with ME: 1. Preparation

This is the first of what will become a series of blogs about how taking testosterone hormone therapy interacts with my ME. In this first blog, I cover things I’ve done before I have my first injection, as well as touching on some of the reasoning behind this series.

Firstly, I changed doctors at the GIC. I’ve written previously about the reaction of the first doctor I saw there to my disability. I eventually finished writing my complaint letter, and the clinic was pretty speedy at moving me to see someone else – my second appointment with a (different) doctor was only four days later than it was previously meant to be.

My appointment went better than I hoped. I had expected my new doctor to be passively better about my ME, i.e. not making an issue of it. As it turned out, he’d actively made an effort to find existing literature/case studies about people with ME taking testosterone :D.

He could not find any such literature. This experience matched up with my research (although I suspect he looked in more places than me, as I didn’t search any scholarly/medical archives). Hearing this made me surer of my wish to write this series of blogs, so there will be something out there for anyone else in a similar situation. Maybe there’ll be a formal research write-up too, but it’s early days yet – something for us to consider.

I know other people who take T who have found that it makes them feel more energetic, and they recover from exercise quicker. This is potentially a positive, if I end up being able to do more. I need to be careful though, in case it’s just that I feel more wired, despite having the same (lack of) energy as I have now, pre-T. If that is the case, and I overstep my capabilities, then I risk making myself more ill.

Another effect, and one we’re preparing for in advance, is muscle growth. Again, this may look like a positive, but may, as my muscles are developing, result in even more muscle pain. Hooray!

So, the person I see at the local ME service suggested that I start on a proper pain-management regime, such that I’ve built up therapeutic dosages of various drugs in advance of starting T. In order to have enough weeks to build these up, I had a week with health related appointments 4 days in a row.

Amitryptaline seems to be the go-to drug for ME pain. It also helps with getting better quality sleep. This does mean, though, that I’ve been trying to come off the drug I was previously using to get me to sleep, which has resulted in some pretty frustrating sleepless early hours. No more sugar cravings though. And given that T can also increase appetite, that’s probably a doubly-good thing.

So, even in advance of my first injection, T has triggered changes. And I am now the proud owner of a large 4-pods-per-day pill box.

7 day pill

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Setbacks in Health and Cutbacks in Healthcare Provision

It’s got harder for me to fit blogging in to my weekly regime. When your active hours of the day are already limited, what might seem like a minor further reduction of activity in terms of hours to others becomes pretty major. And that’s what’s happened: I’ve had to reduce my active hours per day once again, from six to five.

And no, that’s not “normal for a student”: I mean active hours, not work hours. These hours have to include my eating, my showering, etc – all the things that lots of people take for granted. They also include any social time I deign myself worthy as having. And I do deign myself worthy of social time, because however few hours I can do things, I deserve a life which is more than work and basic bodily maintenance.

The balance is precarious. I prioritise self-care (and I include a certain level of social contact within this, in some attempt to allay depressive tendencies), but find that the amount of time I require for this care, when combined with unavoidable other time commitments, like finding a place to live, results in weeks on end in which I produce no new work.

If my health has worsened, you ask, why don’t I take some time out of my PhD to build myself back up again?

Believe me, I’ve considered it. I already took one suspension in December and January when my fatigue was considered post-viral, hoping to recover. And with a chronic illness which lasts indefinitely, I have also considered whether pursuing the academic path is appropriate at all and if I’d be better dropping out altogether.

The thing is, if I was to drop out, I would be in no better a situation. In fact, I would probably be in a worse one. Because all my (disability-related) support is based at the university. Based on what I know from other attending these ME service clinics, even when the date of my first appointment with the local – and I’m lucky, because my closest ME service actually is local – service finally arrives, my contact with them, especially any one-on-one support, will be minimal compared to the weekly meetings with a mentor I have thanks to Disabled Students’ Allowance (DSA).

These meetings give me time to voice the frustrations – with my body and with other people – which build up between them, as well as to find practical solutions for any problems arising in a timely manner. Without exaggerating, these meetings are the reason I am still at university, even if you wouldn’t believe it from the amount of work I (don’t) produce. And so it scares me that funds for DSA are being cut. But we should remember that the reason I’m still in university is that I’m scared of the current situation outside. Other funds available to disabled people such the Independent Living Fund (ILF) are also being stripped away. Sure, I’m not eligible for the ILF, but people in my community are, and it scares me that their survival is being put on the line, and with no alternative being offered.

And we don’t just want a like-for-like alternative. Better, we want a radical expansion of health and social care. Then, on a personal level, my choice to stay at university would be just that: a choice, and not a necessary act simply for self-preservation.

I’m not trying to argue for this purely for my own benefit. But I couldn’t match other people’s efforts at presenting the general arguments with the amount of brain fog and headache I have now, and suspect I won’t have another chance to expand upon it for some time. A friend has written on the matter far more eloquently than I would manage over at http://livingwhiledisabled.wordpress.com/2014/06/08/save-dsa-the-ilf-the-nhs-the-dla-criteria-esa-without-cutting-it-funding-for-social-care-and-all-other-community-support/, for instance.

Setbacks are frustrating. (Househunting is also frustrating.) Screen cap from 1963 film version of Shostakovich's Cheryomushki, directed by Gerbert Rappaport.

Setbacks are frustrating.
(Househunting is also frustrating.)
Screen cap from 1963 film version of Shostakovich’s Cheryomushki, directed by Gerbert Rappaport.

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Tom Robinson and Francis Myerscough for NUS LGBT Committee, Disabled Students’ Representative – Our Manifesto

I’m Tom Robinson from University College London Union. I’m a transsexual autistic with depression and a blood sugar disorder, and I like dogs. I’ve been LGBT+ Officer at UCLU for the past year and was Disabled Students’ Officer before that.

I’m Francis Myerscough, from University of Bristol Union. I’ve had a clinical depression diagnosis since my early teens, and have more recently developed ME, which has necessitated a massive change in my life. For a start, my study is now very part time, which, as a PhD student, with the pressure for a life entirely defined by my research, doesn’t seem to go down to well.

Policies:

  • Full opposition to all cuts to public services
  • Campaigning for radical service expansion, not just an end to further cuts
  • Conduct research on what we as disabled LGBT students want from our movement
  • Ensure that all potential conference venues are checked for physical accessibility by someone with mobility impairments before booking
  • Best practice guidelines on how to label gender-neutral toilets in a way that is sensitive to the needs of both abled toilet users and disabled toilet users
  • Close work with LGBT rep for disabled students’ campaign, women’s officer, women’s reps on committee and Black students’ representatives on committee
  • Campaigning for better understanding of intersectional identities in disability services and gender-related healthcare

Anti-cuts

We stand against the cuts to essential funds and services made available to disabled people; Disabled Students Allowance is one of the next items on the coalition’s cutting block, but we also need to campaign against cuts being made to the Independent Living Fund, and Employment Support Allowance, all of which are invaluable to some students, both in FE and HE.

On post degree prospects

We recognise that disabled students often do not leave education with the expectation or ability to enter employment. It is vital to make the workplace accessible for those for whom accommodations can mean the difference between being able to work and being unable to work, but we need to remember that an individual’s worth is not contingent on their ability to work. We recognise that the needs of disabled students who are unable to have jobs due to their impairments are vital and we are sick of rhetoric reducing our value as disabled people to our abilities to meet abled people’s expectations.

Healthcare should be for health, not for profit

We need radical expansion of NHS services. Simply restoring service provision to its pre-Coalition levels is a starting place, but is not enough to meet the needs of people who were failed by that system before it was drastically cut, specifically trans and disabled people. We fully oppose any cuts to existing services, as well as future plans for service development that do not prioritise the needs of people above profit.

Research

Motion 204: Access Goes Further Than Finance – proposed and written by Tom – mandates the incoming rep to conduct a consultation ‘regarding their experiences as Disabled LGBT students, and in particular, how these have affected their participation in NUS LGBT events, campaigns and conferences and the wider LGBT student movement, both in their institutions and on a regional and national level.’ This will be invaluable in focussing our attentions.

Venue accessibility

We need to ensure that accessible venues live up to this claim. The accommodation at this conference does not provide sufficient space to navigate in a wheelchair. We need to give students with different access needs the opportunity to comment on whether venues and accommodation are appropriate before we book them. If elected, we will offer students with mobility impairments, and specifically wheelchair users, the opportunity to look around prospective conference accommodation before it is booked to check that it meets their needs.

Disability care while LGBT, trans care while disabled

Medical and care professionals need to have an understanding of the intersection, not the simple connection, of disability and LGBT statuses. Attitudes at present are simply not good enough. For instance, both Francis and another delegate have had our ME diagnoses denied by doctors because of our trans status. This reduction of all aspects of our life to our trans status is a form of erasure, pure and simple.

This goes both ways. Gender identity clinics are often incapable of understanding the experiences of disabled people who also need their care, and have expectations regarding social transition which disability might prevent someone from fulfilling while still needing transitional care. For example, if a disabled person is incapable of both employment and having a volunteer role, they cannot always prove that they are ‘living full-time’ and thus meet requirements for hormones and/or surgery. We need a radical overhaul of trans healthcare, and a vital part of this is acknowledging that it is possible to be both disabled and trans at the same time.

Mental health care also needs an understanding of the intersection of disability and LGBT statuses. We need an end to a system in which being trans can be considered

Disability services need to understand the needs of their service users with regards to gender identity and/or sexuality. We need an end to the assumption that a disabled person’s identity hinges solely on their disability, with no other intersecting identities, and instead for disability services to take a holistic approach, recognising that a disabled person’s sexuality and/or gender identity can also play a large role in their life. Services must understand the stresses of living as an LGBT person in a heteronormative and cisnormative world. For example, wellbeing mentors need to understand the pressure on LGBT people to educate those around them about their identities and how that can damage someone who also has energy impairments and/or mental health issues.

Gender-neutral toilets

We are glad that more and more students’ unions are incorporating gender neutral toilets into new builds and/or reallocating existing toilets, as they provide an essential service for many students. However, it is a concern that many unions do this simply by relabeling current wheelchair-adapted toilets as also being gender-neutral toilets. In a world where disabled people are denied sexualities and genders of our own, and particularly disabled people with physical impairments, what does this tell us about our view of disabled people’s genders and sexualities? From discussions on the NUS LGBT Facebook page, we have seen that many unions are unsure how best to label and signpost gender-neutral toilets. If elected, we would work with the LGBT rep for the disabled students’ campaign to produce best practice guidelines on how to incorporate gender-neutral toilets without creating a situation where disabled people are considered as if we do not also have genders and trans statuses.

Working with other liberation groups

We anticipate a close working relationship with the LGBT rep for the disabled students’ campaign. In addition, we think it is vital to listen to those LGBT disabled students who experience oppressions and intersections of oppression that we do not share, and will work closely with the women’s officer, women’s representatives on committee and the Black students’ representatives, to ensure that we are meeting the needs of all disabled LGBT students.

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Feelings and Thoughts about Intersectionality, Part Two

Incidentally, after that last post, I saw a link to this essay by Eve Mitchell on a friend’s facebook wall: http://libcom.org/library/i-am-woman-human-marxist-feminist-critique-intersectionality-theory-eve-mitchell

Now, I admit that I haven’t read the whole essay. I don’t have the space in my limited energy-time at the moment. But glancing at it, I thought the way the author theorises intersectionality is a good example of precisely the criticism I mentioned earlier.

I also thought that the opening clause of the title, “I am a woman and a human”, is useful in pinpointing the difference of an understanding of intersectionality based on praxis. An understanding based on the day-to-day experiences of ourselves and others is necessarily holistic: it approaches us as humans.

And yes, I know that my use and Mitchell’s use of the descriptor “human” are at cross purposes. My point here is not to engage in a detailed rebuttal, but to take the opportunity to make another gesture towards the difference of understanding.

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Feelings and Thoughts about Intersectionality

The term “intersectionality” has become somewhat of a buzzword in recent years in feminist and other political circles I’m involved with. This isn’t to say it’s popular. Rather, the criticisms are part of what makes the concept of intersectionality prominent.

In a sense, my construction of the previous sentence gestures towards what I see as the nub of what is at stake: I described intersectionality as a “concept”. In treating intersectionality as conceptual, my language suggests it is something to be approached intellectually, to be theorised. My choice of language was loaded. I do not actually think this is the case. I think intersectionality is better approached through praxis. Perhaps this is why m two favourite introductions to intersectionality – Miriam Dobson’s Bob the triangle and Stavvers’ road junction – are both concise and practical. A lot of criticisms of intersectionality, however, attempt to take it on as a “theory”.

For my part, in this blog I explore how two aspects of my identity – my transgender status, and my disability – intersect. This means that I will examine some of the ways in which each of these affects my experience of the other one. In a way, this is related to the exercise I undertook last week, looking at how my experiences of clinical depression and ME interacted with each other.

Indeed, the experiences I recounted last week are relevant here, too. Let’s take the example of my trip to see a psychiatrist at the Gender Identity Clinic (GIC). For some people, a trip between cities to visit a specialist clinic means maybe half a day to a day out of work or study, depending on how long you have to travel. For me, trips to the GIC take up more energy than I aim to spend on any day. For my trips, I therefore take three days out of my week: one the day before to try to minimise any payback from days preceding, the day itself, and a day to start to recover. This does not mean that I’ve fully recovered by two days after, but that I hope that I’ve recovered enough to get back into a routine. (Finding a level of activity that you can maintain every day – or, speaking practically, most days – is a common practice among people with ME.)

For a more everyday activity in which my transliness and ME interact, let’s turn to my personal hygiene: showering is an effort. People think I’m joking when I say that, but it is. Physically, it takes up energy. There are some days when that is energy I simply don’t have. And on any day, the time and energy I spend showering is time and energy is time and energy from finite resources which I could be spending on something else.

The sense of dysphoria I get from my body is a bonus. On top of taking up physical energy, showering, since getting clean entails an intense encounter with all those areas of the body which just shouldn’t be the way they are, it’s psychologically distressing. So, because of my transgender identity, showering takes mental, as well as physical, energy. Overall, it’s a very draining experience.

By describing these intricacies of my life, the point which I’m trying to gesture towards isn’t new. I’m just adding my voice to those already advocating for a politics which respects lived experience, not just theoretical rigour.

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