TDoR and the right to remember


Today is meant to be the one day of the year that is all about trans people and not about cis people. And every single year, people I know and love find themselves drawn into the same old arguments with cis people who find ways to make even today of all days all about them.

Leave us be and let us mourn in peace. It’s just one day. Just one. And you won’t even let us have that.

Do you know the feeling of disbelief you get sometimes, when you find yourself in an argument that simply doesn’t make sense? Someone is pushing back against something that shouldn’t be subject to debate, and you really can’t see how or why you’ve ended up in the conversation. Surely there are some things that, even here online where people let their worst side hang out, people know they should simply let be?

Things like taking a day to remember your dead.

Transphobia isn’t a surprise. Dismissal of trans people isn’t a surprise. If people didn’t hate others because of perceiving them as trans, there would be no need for a Trans Day of Remembrance. If everyone saw trans people as fully human and their genders as legitimate as cis people’s, life would be a hell of a lot easier for a hell of a lot of people. I accept- I…

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This Is Autism

Today is a flash blog about what autism really is. I said on twitter all that I thought really needed to be said – that I am autism and autism is me. I am what autistic adulthood looks like.

When people call autism an unmitigated tragedy, they are talking about me. When people call autism a “monster” that steals children, they are talking about me. When people do not vaccinate their children for fear of autism, they are afraid of me. When people call for autism to be cured or prevented in future generations, they are saying that no one should ever have to grow up to be me. When people say they “understand” why yet another parent tried to kill their autistic child, they may as well be saying that it would be okay if someone murdered me.
Don’t think I don’t know that every scary stereotype perpetuated my Autism Speaks and other orgs interested more in cash than in helping real living breathing autistics is ABOUT ME. I can see and I can hear and I can tell they are talking about me. Not talking to me or with me but about me and over me. And it’s time they stopped because autistics can speak / type / communicate for ourselves.

There is a person typing these words on the other side of the screen. He is me. He is autistic.

My life is autism. Everything I see and feel and do is autism. The people I love best in the world are autistic. The worldwide community I am one small yet infinitely precious and valuable part of is autistic. The G-d who made me, made me autistic and every single day I am thankful for that. I love who I am and there is no part of me that is not autistic. Autism makes me who I am and makes many of those I love who they are and makes it easier for us to love each other because we share something so intimate – a way of perceiving and being.

Autistic people share a culture, languages, customs, history… a worldwide disparate community. We have our own special days and our stories and our heros. We have international links to each other, we have a fellowship – a community. A fear or tragedy based understanding of autism could never make sense of that.

We are not lost. We are not broken. We are not tragic.

We are here. We are whole. We are beautiful complete complex human beings.

We are autistic. This is our autism.

How I’ve Been – What Applying For Benefits Is Like

TW: Frank discussion of worsening mental illness, ATOS

Hello readers,

It’s been a little quiet around here for a while and if you follow me on twitter (I’m @autistliam) you might have an idea why. I’ve spent the last few months trying to find out what is happening with a claim for disability benefits I made over 6 months ago, whilst at the same time trying to fill in the forms and provide evidence for two more benefits I’m eligible for *and* manage my social care *and* get to all the doctor and hospital appointments I have to go to *and*… well, and have a life. I have friends and family and lovers to spend time with, books to read, films to see…

And because of the horrific bureaucracy I’ve found myself having to grapple with, I’ve had to do all that whilst living on less than £25 a week, perpetually wondering whether this is the week I’ll hear good news or whether I’ll have to ask my Uni for yet another crisis loan just to keep myself fed. It turned out that this week was finally the week that I have been awarded PIP – Enhanced Rate Care, back dated to cover most of the time I’ve spent living on as little as possible. It’s a relief to finally have it (even though I need to appeal the decision NOT to award me any Mobility payments) but it doesn’t really make up for what I’ve been put through.

It’s been a whole year since I started filling out a DLA form that took me five months to complete, working around my postgraduate degree and around treatment for my yet-to-be-diagnosed chronic illness. I sent that form just ahead of the deadline for the PIP change over but the DWP decided that I would be assessed for PIP anyway – for their convenience, not mine. They sent me a new form and just four weeks to fill it in. Overtaken by stress and despair, I considered killing myself and started self-harming after not doing so for months, saw my GP and was put onto antidepressants and considered quitting my degree but thankfully opted instead to take a year out. That was in May, I’ve been signed off as too ill to work since then but as I never had a job in the first place my sicknotes don’t get me any money. I managed, somehow, to fill in and return the PIP form – complete with over 12000 words of additional information and several sheets of evidence, within the four weeks they asked for. They never acknowledged receiving the form. I next heard something in July, when I was asked to attend an assessment with ATOS on the fifth of August. I arranged for my partner to be available to take me to the assessment and stay with me. I survived the misleading questions and attempts to catch me out in an over two hour long assessment – during which I had a small meltdown, was asked simple arithmetic questions, had my sight in both eyes tested after explaining that I can only use one at once and was asked to explain what triggers my PTSD and why and how often I harm myself and how often I consider killing myself.
After that, I heard nothing for a month. I had no money coming in and had to ask my Uni to loan me a month’s rent in order to have anywhere to live. My advisor phoned the DWP. ATOS had not sent them a report about my assessment yet. Try again next week.
That was early September. Since then, I’ve been trying again next week *every week*. The Uni has given me two more loans to keep me housed and fed. ATOS took seven weeks to get my assessment report to the DWP. They didn’t tell me they’d received it. It took almost another month before they looked at it and made a decision. They didn’t tell me about that either. I found out today by having my advisor phone them to ask them whether the £1600 that had appeared in my account was actually for me. Apparently it is.

The last year hasn’t quite been Hell (I’ve seen Hell and it’s much worse) but the precarity of always being told that things will be okay soon with no clear idea of when “soon” will be is certainly torture. My mental health has been affected and I have needed to start antidepressants, needed to ask friends to help keep me alive by making sure I eat or by sitting with me when I’m struggling to keep myself safe. I suddenly have some money and an income and can afford to eat better and to buy things but so long on less than £25 a week has made me forget what I even wanted.
I suspect it was to replace the clothes that I have worn through. Perhaps it was to eat in my campus bar every now and then or maybe to buy more than one drink at the pub. I need to replace my passport and haven’t been able to afford to.

Before all this, I was doing an MA and considering volunteering or part time work. Right now, I am doing neither as all my energy goes towards trying to sort out my benefits, social care and health. Being too ill to work is a full time job in itself.

This ordeal has changed me. It’s not been as hard as it would have been if I were not a student, I’m very grateful for help received from University Welfare Services, friends and partners and hundreds of supportive people on twitter. I hope to get my life back on track soon, I’m going back to Uni properly in May and I hope to have my PIP, ESA and Housing Benefit sorted by then. If things are sorted soon, I’ll look into volunteering.

In the meantime, I’ll try to write. I have been so scared to write this, so worried that somehow it would affect the result if I wrote this blog post before getting my first payment.

As this blog post is going much further than I ever expected it to, I’d like to clarify some things that I didn’t make wholly clear.
Firstly, PIP is a benefit you can get whether you work or not. The out-of-work benefit for UK disabled people is ESA and I’m currently filling in the form for that and will have to have *another* ATOS assessment in the next three months for that.
Secondly, the people who told us repeatedly to “try again next week” were *DWP and ATOS staff*. They told my advisor every week that I’d get a decision the next week – for over two months.
Thirdly, without my advisor at the Uni phoning them for me I would *never have heard anything* from the DWP between August and now. And I would have no money to afford to phone or write to them either.
Finally, I just want to repeat that I have had fantastic support from my Uni, my friends, my partners and my doctors. Other people *will* be facing this alone and we need to find ways to find them and help them.

Re: Solidarity – Supporting the Strike from your Inbox

STUDENTS TAKE NOTE: your lecturers and tutors need your support.

Useful Nuisance

Following on from the 31st of October, union members in higher education are working to rule, with a further strike announced for the 3rd of December. October’s strike for fair pay for university workers attracted much greater support from students and their unions than in recent years, though some students did cite the rise in the tuition fee cap as conscious reason for crossing picket lines.

During my degree, my mental health (and before that a complete absence of class politics) limited my practical solidarity to interventions at SU meetings, and supportive conversations with staff and fellow students. With that in mind (and on the understanding that those who can afford to should do more), here are some suggestions I wish I’d received for supporting industrial action from the relative safety of my inbox.

Note: Generic tactics are not a substitute for working directly with your campus unions. If…

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