The building I went for my PIP assessment in is probably the most inaccessible building I’ve ever been in during my 32 long years on this earth. ATOS in this area will do home assessments for people with mobility issues, which is good as the entrance has three heavy doors you have to be buzzed through, the tiniest waiting room of all time and the tiniest assessment rooms.
PIP assessors are a medical professional of some sort – OT, physio etc. which means the chap I saw should at least know a bit about what’s going on. He was really nice, which was good, but I felt like the assessment wasn’t thorough, and just went through everything I’d already written about in detail on my form. He asked about what conditions I had, the medications and their side effects. He was supposed to ask about a “typical day” but in fact he only covered eating and drinking and didn’t ask any more. The quote of the day was: “I need to write down an explanation of what this condition is because the person reading it won’t know about it”. Confidence boost right there!
Then there was a “physical” which was composed of your usual basic physical tests – touch your toes, squeeze my fingers, push against my hands and so on. If I’d have applied with a mental health condition I’d be quite confused by this point.
I did take someone along with me – my mum – who took notes (she didn’t ask if she could but she wasn’t stopped). The ideal person for me to take should’ve been my husband but a) see above re. wheelchair accessibility and b) it would be a foolish idea for me to walk into my PIP assessment with someone who is more disabled than I am.
It was exhausting. Towards the end I just couldn’t get all my words out. I missed so much. I feel like the right questions weren’t asked. I feel like I wasn’t enabled by the assessor to make sure I explained everything.
It felt like an exam. It felt like I should revise, make sure I can remember everything, make sure I answer the questions with the right answers. I felt like I was being tested, and I would come out with a pass or fail. Because the system is set up to make us fail. It’s set up so that we feel like we’re having to say and do the “right” things to be able to pass the PIP exam. We have to prove our disabilities, our illnesses. And rather than a system designed to make sure people receive the support and help they need, rather then a system that will hold your hand and guide you through with your best interests at heart, it is designed to put you on trial. To say “prove it”. And even when you do, it doesn’t always believe you.
I’m currently working on the assumption that I’m going to have to appeal. I figure that way, if I am successful first time it’ll be a nice surprise, but I’m being realistic. But this phase is done. Now I wait for the brown envelope with the PIP exam results in.
It’s that time again…my six month PIP-iversary! And what did I get as a kind gift?
An ATOS assessment. On Monday morning.
To explain: I called the lovely DWP this morning as my application has now passed the golden 26 week mark and I was finally allowed to talk about it to another person!
“Hmmm” she said, “we sent your application to ATOS in February, you’ve not heard anything?”
“No” said I.
“Ah” she said. “Do you want to call them and see what’s going on?”
“Not especially” I thought. “Yes” I said. She gave me a phone number, so I called ATOS.
Who had a cancellation for 9am, Monday morning. Hurrah! Oh god…
So, now I have my ATOS assessment for my PIP application. Have roped my mum along into being my transport plus an “advocate” while I’m in the appointment – I need someone else to remember stuff for me. Ideally I’d take my husband but in this instance he would not be a good person to take. Why?
Because he uses a wheelchair, and I can’t turn up to my PIP assessment with someone who is more disabled than I am. ATOS are famed for making ridiculous assumptions, and seeing me as the “less worse off” one would not count in my favour. So, no husband on this one.
So that’s the situation. Seems to have gone from standstill to full throttle in the space of no time at all. I have, at least, got the very good guidance notes from Benefits and Work so I will study them this weekend, and revise for my assessment.
Last week it was my 5 month PIP-iversary. Hurrah! That meant it was time to contact the Department for Work and Pensions. Boo.
For various reasons including an epic 2-day fibromyalgia flare and general “not wanting to speak to the Department for Work and Pensions”, I put off making the phone call until this morning. But, seeing as I’d already waited on the phone for half an hour to get a GP appointment and was already in a pretty foul mood, I figured in for a penny, in for a pound and rang the DWP.
I was on the phone for, at a generous guess, 45 seconds. That was how long it took for me to tell the automated phone system that I wanted to find out how my PIP application was doing, and for it to tell me that they didn’t want people to contact them about their applications until 26 weeks from application.
My application is dated at the beginning of January. Which puts me somewhere in the middle of week 23. I have to wait until the middle of July before they’ll even talk to me about it. And that’s FINE, apparently.
But, forget about me. I’m fine, apart from a few flares and some pain I’ll be alright. I’ve got family and friends who are helping me. But, what about people who can’t look after themselves? People use their (currently) DLA to get access to adapted cars, wheelchairs, specialist equipment, carers…imagine being told that you’ll have to wait for over half a year before they will even consider that they might be taking a long time about helping you. People are literally dying before the DWP gets round to them.
And that’s assuming that, after your 26 week wait, they’ll tell you you’re getting some money off them. According to Benefits And Work, after the first nine months of PIP being rolled out, only 15.4% of the 220,300 applications had been processed, and of THOSE only 37% were awarded anything:
“To put this in perspective, this means that only 12,654 people, out of the 220,300 who have made a new claim for PIP in the 9 months since the beginning of April 2013, have been awarded PIP.”
That is 5.75%. The likelihood of you receiving PIP on your first application is just over 1 in 20. That’s not good.
But, I don’t need to be worrying about that yet. Because I’m not allowed to talk to them about it for another month. Because taking 6 months to process a benefit claim is just fine. Apparently.
As you read this I will be somewhere between Cornwall and Bristol I imagine, but I did want this to go out today as it’s my 5 month PIP-iversary today. Hurrah!
Well, now, let’s be fair. It’s five months since my claim was opened. It’s only FOUR months since I sent it back to the DWP so they could throw it at ATOS to wait in a large pile for months. Because I wouldn’t want the DWP to look like they were taking an excessively long time about it or anything.
In those four months:
- I have received a diagnosis of fibromyalgia
- I have gone onto and off medications.
- I have gained symptoms that are completely different from the ones that I put on the form
- I have stopped being able to do things that I could do when I filled in the form
- I can’t walk as well as I could
- I can’t drive as well as I could
- I’ve got a better idea of my “base line” and what my “flare” times are like, and it’s a lot worse than I thought
So, long story short, what’s on that form bares a passing resemblance to me in January 2014. It really doesn’t bear any resemblance to me in June 2014. Unsurprisingly.
But when I finally do get the letter that says they want to poke at me and see if I am what I say I am, they’re going to base their assessments on what I said in January. And then when I get a letter saying I’m not eligible for PIP (I am both realistic in my thinking and looking to the worst outcome as to not disappoint myself) I will have to appeal with my new situation, my new medications, my new symptoms. So they can take another 6 months to look at it. By which point it will more than likely have changed again.
Do you ever get the feeling you’re chasing your tail? That you’re running round in circles?
At some point this week I will call the DWP, again, and see if my form has seen any daylight since February. And then I’ll wait another month.
Imagine if you will that you’re walking down the pavement. Just, minding your own business. You walk round a corner and BAM you get hit by a cyclist riding on the pavement coming the other way. You fall over, maybe you graze your elbow. Maybe you even bang your head on the floor. Either way you’re kinda banged up and feeling sore and hurty. The cyclist ignores you and continues on his way.
Later that day you meet up with a friend who’s also a cyclist. You say to him “You’ll never believe what happened to me today, I got hit by a cyclist who was riding on the PAVEMENT! They knocked me over, I’m lucky I didn’t get a concussion!”
“Um, I’m not like that” your friend replies, hurt. “I’d never ride on the pavement.”
“I…know.” You reply. “I wasn’t suggesting that you did…I was just saying that THIS one did.”
“Look, we don’t ALL ride on the pavement, some of us are GOOD cyclists and we ALWAYS ride on the road, so don’t go thinking that we’re ALL like that because we’re NOT!”
“Look, I’ve just had a bad experience with a cyclist and I’m kind of in pain here…”
“GOD will you just STOP badmouthing cyclists it’s UNFAIR!”
How about another scenario? Let’s say, you’re a massive football fan. Huge fan. You follow your team, try and catch every game. Your team has just found it’s way to the final, and you and a friend are having an in-depth discussion about what you think went well this season, the tactics you think they should use, what the new manager’s been like.
Up comes another friend. “Oh, hi, you’re talking about football? I don’t know much about football, what’s the offside rule?”
You blink at him. “Well, I can explain that to you later if you want but we’re kind of in the middle of a conversation here…”
“Hey!” says your friend. “I just wanted to KNOW. Jeez, you people go on about football ALL THE TIME, if you want me to be interested in it you’ll have to tell me how it works!”
“Well, sure” you say “but right now I’m talking to this guy about this season…”
“What’s a season? I don’t understand! How do you expect me to like football if you WON’T EXPLAIN IT TO ME?”
“Look, dude, you could Google it? Or maybe read a book about it? Or, find a website that talks about the basics? But now’s really not the time…”
“Um, no, you’re the one who keeps saying I should like football, so YOU should explain it to me and you should do it NOW, HERE so I can join in your conversation! Otherwise I won’t understand.”
“This isn’t the right time. Maybe you can let us have this conversation here, and then maybe you could go and read up on football?”
“FORGET IT. You always say I should look into football but I GUESS if you won’t explain it to me you’d rather be ELITIST. You complain all the time about how people don’t understand it but now you won’t explain it to me.”
The first one involves someone someone being more concerned with their own reputation despite someone having been hurt. The second involves someone wanting to have their needs met despite it not being the correct situation for their needs to be considered. Both of these (somewhat simplified) situations arise wherever women meet to talk about feminism Both online and offline.
The first one is happening right now. Women are sharing their (real, disturbing, traumatic, upsetting) stories of times they’ve been assaulted by men. The response from men is “But not ALL men are like that!” As I said in my last post, this now makes the conversation about the man, not about the woman. It suggests that the man’s hurt feelings are worth more than women telling the truth about their experiences. We know that “not all men are like that.” In fact, very few are suggesting that. But, it’s men’s hurt feelings being more important than women telling their stories.
The second one usually comes up either in online or real-life discussion when feminist theory debate and discussion is going on. Women are having their discussion when a man shows up and says “Hey, I want to join in! Why are you saying we’re all bad? What’s privilege? What’s intersectionality?” and the women say “Um, actually, we were kind of in the middle of a conversation here..” and the response is pretty much always a version of “Well, you want men to learn more about feminism and then you won’t help, what do you expect?”
Firstly. it is not the women’s job to teach men about feminism. It is the up to the individual to educate themselves. There are places you can do that.
Secondly, it’s another example of the man wanting to make his feelings and needs the priority. “I don’t know about the stuff you’re discussing, educate me!” No. This conversation is not for you. As has been proved, there is a habit of men wanting to make the conversation about them.
“But, I won’t make the conversation all about me!” First, see point one. Second, sometimes there needs to be space for women to talk about being women without men present. Unfair, no? Well, no, it’s not unfair, not really. Just think of all the male spaces readily provided in society. The football pitch. The pub. Many company boardrooms. There are so many male spaces that sometimes women need to create a space of their own.
And there’s no risk of men being “oppressed” by this creation of women’s space. Mainly (to quote myself, modestly):
Oppression happens over centuries, through cultural norms, through generations of being taught that you should be a certain way or that you have power over someone else. It doesn’t happen through a hashtag.
There are spaces I don’t get to go into. I don’t belong in spaces for people of colour. I don’t belong in spaces for trans people. Even though I’m married to a trans man! And I probably know more about being trans than a lot of the population! Yet I still don’t get to be in that space! Oh no, poor oppressed me! No. I don’t belong there because that space is not for me. My issues do not matter in that situation.
So, therefore, men’s issues are not relevant in a women’s discussion of feminism.
Again, I welcome comments and discussion. Again, I ask you to work out if you feel pissed off, then think about why you do before you comment. Again, I’m not going to spend my time reassuring men that “they’re not all like that” because that is not my priority. It isn’t all about you.
Alright. This is a blog post I’ve got to write but I think it’s going to take me a while. Because this is a subject that should take a while.
I am not going to try and reassure men that I’m “not talking about people like them” when I’m talking about women being killed. I’m talking about fellow members of my gender being murdered, my priority is not your feelings. People are going to get pissed off reading this, and that’s 100% intentional. If this pisses you off, I want you to think hard about why it does.
I’m also not talking about the perceived “nerd culture” or “PUA” theories around what happened with the recent shootings. You can read a fantastic piece about that here (and I think you should because it’s very well written) that basically boils down to “Sex is not a zero-sum game. You don’t put enough “nice” in until “sex” comes out”*
*I heard this line somewhere online and thought it was brilliant, I forget where I saw it.
I am, however, going to talk about the #YesAllWomen on Twitter, some of the reactions to it and why, if you’re feeling anger towards the things being said there it might be time to stop justifying yourself, and listen.
Don’t talk about how’s it’s not you, you don’t do this, it’s not all men, not me. Not me.
And listen. Listen to the women who are harassed, assaulted, harmed and killed. And think. Think about how, if you’re male, this is your gender doing this. It’s part of a group you belong to. And I know, I really do, that it feels so, so awful. Stop saying “it’s not me”, and start saying “it’s my people.”
But why? Why should you, a law-abiding human being who would never dare to rape, to hurt, to kill, why should you take responsibility for these monsters? That’s not fair, surely? Well, no. I suppose it’s not. But speaking as a member of a group who are battered and murdered on a daily basis, I say you should realise that they are part of your group. That’s just the way it is.
The patriarchy is a real thing. And part of it says “Men have voices! They have things to say! They must stand up for themselves if their gender is being hated! Otherwise we’re going to be oppressed!” That same system says to women “you have no voice. You must be quiet. You are not to be heard. You should be talked over.” Trying to get past that is what causes the “not all men” problem. Firstly, men will not be oppressed for being men. Oppression happens over centuries, through cultural norms, through generations of being taught that you should be a certain way or that you have power over someone else. It doesn’t happen through a hashtag.
The other element of it is that men are not taught to listen. They are taught that their voice is the most important, that their feelings are the ones that matter. If a woman says “I’m scared of going out at night because men are rapists” men instantly hear “You are a rapist”. It’s made about them, about the individual man. That sentence is not about the man hearing it spoken. It is about the woman who is afraid of being raped. Hearing that sentence should NOT make you think “well that’s not fair, I’m not a rapist!” it should make you think “what must men have done to cause that woman to feel so scared? There is a reason behind it and that’s awful”.
Stop again. Take a moment. Are you angry? Cross? Frustrated?
Ok, think about why. Are you frustrated for the woman who is scared of being raped? Or are you angry that I’m making a sweeping statement about men? Which one do you think should have the biggest priority?
Women are scared. And they’re scared of men. If you are a man, that means they are scared of you. No matter how nice and kind and wonderful you are, someone will be scared of you because in the past, she was raped, hit, assaulted, harassed by a man. If that makes you feel bad, then good.
So what, I want all men to feel guilty? No. I want men to stop. I want them to stop talking and listen to the women. To the voices that usually don’t get a chance. Go and read the #YesAllWomen hashtag on Twitter. Listen to the stories these women are saying. Think “am I angry that I’m being put into a category or am I angry that this woman was attacked?”
The #YesAllWomen hashtag is a space for women. It’s a space where men need to stop talking, start listening and decide what they can do to stop their sisters, mothers, daughters being attacked on a basis that makes this an ongoing endemic of violence.
I am very interested in discussing this in comments. All I would ask is that, if you’re feeling angry because you feel I’m treating you unfairly is that you wait for a moment, go and read the hashtag and come back later. Discussing through anger is never fruitful.
I’ve another post on feminism coming later. Please leave your thoughts. Please listen to your sisters.
The victims of the shooting of May 23, 2014 Isla Vista, CA were:George Chen, 19 Weihang “David” Wang, 20 Chen Wang “James” Hong, 20 Katherine Cooper, 22 Veronika Weiss, 19 Christopher Martinez, 20
These young people’s names deserve to be remembered, not the man who killed them.
I know I know, I missed Blogging Against Disablism Day. Consider this my late entry.
As regular readers will know, I really want to go back to work. Over the last few weeks and months however my health seems to have had different ideas and my definition of what work I can do keeps getting narrower and narrower. BUT! Being the striver I am, I don’t like to let these things get the better of me and so I’ve been trying to be creative about how I work and what I can do.
Enter stage left: Access To Work! A wonderful government programme that give back £1.48 for every £1 it spends, provides equipment for disabled people to go into work and is generally lovely and marvellous.
Well, kinda. See, I’ve heard really good things about Access To Work. My own personal experience had, so far, been wonderful. I spoke to a nice guy on the phone who took loads of info, another nice chap turned up at the house to talk to me about my needs and what equipment might help me continue working. A chair I could sit on for more than five minutes. A roller-bag for my computer, a wheelie-thing to put resources in so I wouldn’t have to carry stuff. It was all going so well.
And then a letter arrived. Listing all the nice things the nice man had suggested I have so I could keep working. And a nice big price tag to match it.
As I am self-employed, I don’t have an employer to pay for my equipment who can then claim it back from Access To Work. Which means I have to shell out for the equipment myself and then claim it back from Access To Work.
All £967.37 of it.
Spoiler warning: I don’t have £967.37.
So I guess that means, no equipment for me. No nice chair, no bags to carry my stuff. And time to think of another way to try and get myself back to work.
For a government that’s wanting people to work they’re certainly making things difficult. “You’re disabled? Can’t get to work? Why don’t you become self-employed! You can set your own hours! *Disclaimer: You will need somewhere in the region of a grand to do so*”
I’m on benefits, currently. I don’t have that kind of money. One option would be for me to wait until my PIP backpayment comes through (if I get it) then use that to buy the equipment, then claim the money back but I kinda had that earmarked for a mobility scooter. I don’t know how long it’ll take to be refunded by ATW, but I kinda need a scooter and don’t want to be waiting even MORE months to buy an essential piece of mobility equipment.
It’s a dilemma that I shouldn’t have to have. I shouldn’t have to choose between purchasing equipment so I can work and purchasing equipment so I can get around. The two things should not be mutually exclusive.
Let’s put another spin on it. Let’s say I was employed by someone and needed the equipment to start work. Said employer would have to shell out nearly a grand for me before I started working, and then attempt to claim it back. Why then, would an employer choose me to do a job when they could choose an non-disabled person to do it without the extra hassle and cost?
I want to work. And it’s becoming harder and harder for me to do so.