disability

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Brief Comment on Democracy

The UK did some electing recently and I was able to participate thanks to the postal voting system.

It might sound like a trite thing to say but it is worth drawing attention to; I don’t have a postal vote because I am frequently out of the country or live at two addresses – I use one because it means that I can be part of the democratic process no matter how my health is on polling day.

If you suffer from any kind of depression or social anxiety walking into the polling station and making any sort of decision is mind-blowingly intimidating and overwhelming for the cognitive processes. Not to mention you have to get your shit together enough to know which day it is and where you are going.
I managed it only once; stood in a booth sweating, shaking and crying whilst I tried to remember something relevant about the names in front of me and knew I would probably never do it again.

But.
With a postal vote, I receive my ballot papers in advance. It means I have a chance to look at the candidates, walk away, look again, let them sink in & even go away and read about them on the internet all over again; I have a chance to read the instructions 3 or 4 times so I don’t just spoil the ballot paper and to actually make a choice. A real informed democratic choice.
It also means I have about a week to remember to take it to the postbox whenever I feel confident without time-pressure.

So when we talk about all the people who don’t vote and wring our hands in wet liberal despair about disenfranchisement – just remember that a simple change of process meant that my mental health no longer gets in the way of my vote and it might help someone else too!

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I am not an Activist

I am not and never have been the person who goes to the rallies, I do not use my position of privilege to offer a platform for minority voices.
I have never started a petition or lobbied parliament. I don’t even blog about my politics very often.
I have to put my energy into being me and I don’t have the strength to do more but I have nothing but respect for the energy people put into that kind of fight (even when I don’t necessarily agree with their aims) and I am well aware that people with less resources than me, less physical and emotional stability than me try to make the world a better place and offer themselves up for causes I believe passionately in and a part of me is ashamed of my inactivity even as I know I can’t do it.

I am also not a person who shares much in the way of links to blog posts and petitions and political rants. The two are very much related.
Since I am not involved in the fight I do not know the path that it has taken to that step and whether that course of action is the right/better/only way forward. Since I am not involved in the fight I don’t want my voice to drown out the voices of those who are.
And most selfishly of all I don’t want to be that person – the kind of person who jumps on bandwagons without understanding all the issues, the kind of person who nags people to be do-gooders with the press of a button without standing up there doing it, the kind of person who thinks liking a page on facebook is all the effort that they need to put in.
I choose to try and lead by example in my sensitivity to other people’s needs and rights and I hope that my comparative silence means that people will take a moment to stop and listen when I feel I must speak out.

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Turning 30

I pretty much like getting older.
Its kind of comforting, freeing, hopeful and exciting but milestones are pretty scary.

When I was about 15 I had a list of things to achieve before I was 21 (which gradually became 30) – at 15 the list had things like have sex with a man, have sex with a woman, get a degree, take certain drugs, own my own throwing knives, travel to every continent, skydive etc… I did a lot of those things but there were always more experiences and more targets to reach.
I want to tell you that I am proud of what I have done with my life and sometimes I am.. my relationships, my marriage, my doctorate. – all not inconsiderable and all pale gently beside actually living day-to-day
I really am consistently amazed by those strange people who get up every morning like its no big deal – getting out of bed like it doesn’t hurt, like you don’t want to curl up and cry. How do people do jobs and housework without collapsing? What is with leaving the house *every* day?
Nothing makes you feel like a failure like looking at the careers and families of your peers… Knowing the reasons that I don’t have a full-time permanent job and 3 kids (depression, anxiety, chronic pain, relationship choices & financial planning a.k.a. laziness,  cowardliness, deviance & lack of ambition) doesn’t make me feel less like I should be coping better.

Every time I hit a “life event” I start to miss my mother. Its a silly thing, on the basis I no longer have any idea about how she would react to my life now, how she’d feel about modern life like the internet and mobile phones, I can’t imagine what the arguments of my teenage life would have been like, or the discussions about my partners, what her opinions on my wedding might have been or her recommendations about my career. I can’t imagine what my relationship with her would be like and I have no understanding of other people’s relationships with their mothers at all. It seems almost ridiculous to guess and even more daft to still crave her approval and yet I still get blindsided by her loss at inopportune moments.

I guess the point is, if I ever thought I would get to 30 this isn’t what I expected. I am kinda disheartened by the whole process in that I am not all grown-up and barrelling along with my glorious life. In fact I kinda don’t know what next…

  • I did the doctorate (which I might add in no way makes up for secondary school & undergrad, sorry) but don’t want to be a lecturer – I think in terms of continuing research its got to be publications
  • I found my special someone… and someone… – the next obvious step must be kids which I think I (we?) want but what about the: money, organising, prejudice, fear.
  • I have *a* job – I don’t have a real income generator, or even a full time position and I really want to feel like I am contributing financially – next step is erm decide what I can actually do? Could I run a pub? Work in a museum? Even actually manage 9-5?

I don’t feel old, I feel young. But I am jaded, bitter and scared and I only see an economy and a political system that doesn’t want me.
So what now?

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Dear Student Finance

Why?
Why do I have to fill in a full application form including my nationality and address for the 3 years prior to starting my course when I have already given you this information (hint I’m required to notify you if I change my nationality and the address I lived in 04-07 is still the one for those years)?
Why make me struggle through the piles of paperwork when I’m tired and stressed already?
Why do I have to sign a ‘loan declaration’ when I’m not applying for a loan just a payment for my mentor..? Are you going to hound me to pay back money that was supposed to be supporting me?
Why do I have to send all the paperwork through to the uni again when I (and they) are required to notify you if I drop out?
Why is it so damn difficult? Is this designed to just make me give up?
Yours sincerely
A tearful, anxious, stressed and confused student

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DSA worries

It turns out that I should have re-applied for my disabled student allowance at the beginning of the academic year. Apparently you have to fill in their forms every year but no one told me.

So although I failed to keep any of my receipts and am too embarassed to ask for any extra assistance, because my university provided me with a mentor I have had to fill in a new application – though this only became apparent when they applied to the govt for their reimbursement and was the 1st I knew about it.
According to my disability support liasion I don’t need to have new Dr’s evidence, which came as both a relief and a surprise. A relief because a certifying letter from the Dr is expensive and time-consuming (approx £30 and 2 weeks – despite being attached to a uni the health centre even charge for letters for extenuating circs at their own uni!!!) and a surprise because of the current government’s attitude to disability (i.e. prove it umpteen times and we still probably dont think you deserve DLA, ATOS I’m looking at you!).

I’m worried.
I’m terrified they’ll decide I’m not entitled, that the university will ask me to pay for the mentoring services (which I only took because I thought they were funded). I’m terrified they are right. That I am a malingering fool, after all I’m not on meds at the moment.
I’m not very good at asking for money or support. In all my years as a PG and despite being allocated a fund every year I have never claimed money back from the university, for conferences or photocopying. I have never complained at the difficulties and costs associated with returning library books as a distance learner or the extreme panic any form of admin not explicitly emailed to me has caused. I accept both that travel is required and expensive and that I made the choice to live away (to stay with my partner, support network and job) and that standard PG resources are all campus based and even that all disabilty resources are campus based – but I feel like maybe just maybe there should be/have been someone to support me through the financial issues and the DSA forms and checked up that I was getting help. Am I asking too much? Am I just jaded?

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University Mental Health and Wellbeing Day

Today the University Mental Health Advisers Network has encouraged universities across the UK to hold a series of events to promote good mental health.

My University has suggested a 5-a-day plan for maintaining/improving wellbeing. These are:

  • connect with the people around you
  • do something active
  • take notice of the world
  • learn something new
  • give to others

The idea is to suggest positive things individuals (and especially students) can do to improve their own wellbeing – with the theory not only that prevention is better than cure but also that although efforts to destigmatise often attempt to promote dialogue a lot of effort is put into recognising symptoms and promoting equality it starts from a notion of right and wrong mental states rather than a continuum of health, the former of which van lead of course to reinforcing a sense of internal stigmatisation. I think that, of course, awareness goes hand-in-hand with positive activity and steps that encourage students to look after themselves and each other can only be lauded.

My only real quibble is that as a distance-learner I can’t assess how the day has gone or actively partake in any of the events.

As part of this national day I have had a chance to look at the documents published by UMHAN which include suggestions for improving access to HE for people with mental health difficulties, improving reporting of mental health disabilities and engaging with support from the DSA scheme and frameworks for institutional support. And I have to say I’m impressed, I’m especially impressed with their section of guidance for students and I look forward to seeing the suggestions and guidelines more widely publicised

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Negotiating work-place policies

It so happens I have been doing research of late on good practice in the work-place relating to reducing work related stress and managing mental health difficulties at work.
I have found an array of words saying how important stress risk assessments are and about the need for good back-to-work interviews, phased return and reasonable adjustments. I have read paragraph after paragraph about the importance of managerial responsibility and frameworks of good practice and the importance of having inclusive and supportive policies. I have read almost nothing on what to actually do!

I feel this is a related problem to my experience of student disability support – the ideas about mental health support were related to having it not doing it. So what can actually be done to support people?

Lets start with return to work. Why not start with prevention? Well in a nutshell because I believe it doesn’t work, there just isn’t a way to prevent people generally going mad, what works for you might not work for me etc and sometimes no amount of positive working environment can prevent your family from dying or screwing you up or your brain flipping over into pretty colours and delusions. So anyway you had a breakdown, you are basically nuts but you still want to earn a living (possibly a sign you are truly crazy) and you go back to your employer.. I have seen 3 different responses.
By far the worst was a simple statement of  “OK. so now you have to make up the hours you were off”; on the next scale up we have the “I see that we are obligated to follow your Dr’s recommendations about working hours so how about you do a few weeks just days then go back to shifts”; and finally we have the best which included meetings with line manager to discussed progress, consultation with a company appointed Dr and more than a month of reduced hours plus continued expectation of requests for some extra breathing space.
It seems so simple to see that for someone who simply isn’t coping with the process of living, that both returning to work with its structure and purpose and keeping the pressure light and the hours short should be positive steps to self-management so what stops company’s from doing this? Its not the policy statements that follow governmental guidelines and industry standards it is simply the hassle and cost of arranging work-cover and negotiating time limits (which is not to suggest that these things are not difficult especially for small businesses nor is it meant to suggest that there might not be financial repercussions for a constructive dismissal case but simply that a lot of managers can’t see past this issue)

Alright so you go back to work, under whatever arrangement you make with your line manager, and you should be given a hand to make the transition back. If its an ongoing issue or you are away from work for a significant amount of time you are pretty much covered under DDA and therefore they can’t sack you for being mad and you are entitled to ask for reasonable adjustments. I am fairly clear on the sort of adjustments you can make for a blind person but I am a little hazy on what those might entail for someone with ongoing mental health issues.. Here are some thoughts:

  • A quiet space to take breaks in
  • flexible working hours (esp useful if meds make you woozy or public transport in rush hour reduces you to a quivering heap)
  • mentoring
  • clear goals and targets
  • sensible office lighting ideally including daylight
  • An external neutral party – to discuss issues with colleagues, work etc

What Have I missed?

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Disability: Other #3 -Diagnosis?

Alternative Title: A Heirarchy of Crazy: Madder than Thou

Inspired by This post.

How important is the diagnosis/label given to you by your mental health professionals?
As I have commented before I think of myself not so much as suffering from a mental illness or disabled as having a mind that occasionally makes the world difficult to navigate. I live with my special form of crazy and some days are better than others and my perception of myself and others is probably out-of-the normal spectrum. But not everyone feels like that and not everyone deals with it like that.

A diagnosis can mean a lot of things to different people: for some its a relief to have a recognised condition with recognised treatments and a pathway to being normal again or at least something to blame for those troublesome feelings/thoughts/voices; for some its a pass into crazy club where the cool, intelligent arty types hang out; Others don’t want to be one of ‘Them’, the mad and possibly dangerous; others fear that everything about them has become a symptom or that they are defined by the description of their illness or personality.

This can lead to a couple of things – that some types of madness are more real, serious or dangerous and that we have something to live up to or battle against.. An internalising of an idea about who we are created for us by someone writing down a diagnosis on a piece of paper.

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Many Closets

Coming Out –  a rite of passage reserved for those whose sexuality is contra-indicated by major monotheistic religions? Well No.

Telling people that as a girl I quite liked girls was pretty easy. After admitting it to myself when I realised that fantasing about girls and wanted to be sexual with them didn’t mean I had to give up on boys. I was lucky that the group of friends I was with at the time (age 16) was very proud about being sexually liberal and being bi was de riguer, though most of my friends have gently pottered back to the safe straight fold; additionally I was enjoying being a rebel and the school was expecting to deal with my acting out. I was prepared to tell my father I had a girlfriend months in advance of doing so -but I have never tried to tell him that I like boys too.
More importantly for my present circumstances I have not yet been ready to tell him about the fact I am able to love more than one person. I hope that one day I will be able to explain that my love for W is lifted and filled by my love for B. I am sad that I have not yet been able to explain to my dad that B is such a huge part of my life but for a while yet I think I need to focus on making W a part of my family.

But as closets go, polyamory seems easy -after all the majority of my friends know and seem to feel able to ask me questions, though I have to admit there have been ructions. For W’s sake I try to be discreet but kitten and W herself have been quite open and sometimes the process of people’s finding out and their subsequent reactions have been painful but What’s hard for me is my mood.

I have lived an open bisexual ‘lifestyle’ for nearly 12 years, and been with W for nearly 10 years – even my grandmother knows her. B & I have been together for 3 years and been reasonably open for the whole time. But it is more than 14 years since my mother died, perhaps 16 years since I first self-harmed and definitely 12 years since my first major breakdown and yet I have had only one conversation with my father about it – less than a month ago -and there are so many people I close up on at just the mention of mental health.

It is hard for me to acknowledge that Depression is part of my life. Still in the darkness of my mind I feel that it is a weakness and failure on my part

Depression is my cancer; it has grown on me, malevolent and deadly. It needs to be cut out and destroyed..yet in doing so other corrupted parts might need cut out too – creativity, individuality, independence which are fed and fed upon by my dark moods. The treatment is scary; it zaps my energy, takes away how I look and see myself, makes me want to throw up… And in the end there can be no promise that it will do more than push it into remission ready to rear up again in the future.

Depression is my guilty secret. The ‘thing’ I should have beaten and the view of pity visited upon me. I want to be able to be honest, to accept that its shadows are part of who I am and know that acknowledging that it will always be with me does not mean admitting defeat. I want to be myself without giving in to the darkness and I am afraid.

Depression is the closet I can’t quite clear out. I believe acceptance and lack of judgment, support and hope can help but I am not yet ready to stand up and tell the people I know that this is me.