Zero points. When I first read the decision letter, I honestly laughed. Then I tried not to cry, and now I’m stuck in righteous anger mode (so apologies if this post is somewhat disjointed). But anger makes me productive, motivated.
Let me tell you how I got here….

It took me weeks to get my PIP assessment sorted from the time I was first offered one in March (after applying in August 2014). Initially they sent me an appointment for 8am – in Chelmsford. Since I’m in North London, this would have required me to get up at 4am to ensure I could take medication, get dressed, and leave the house in time to get the nightbus to the station for the first train. It wasn’t going to happen. I was allowed to rearrange the appointment for a more local centre, but missed it by 15 minutes – a broken lift at the “accessible” nearby tube station and a hellishly long walk to the assessment centre after already having done the station stairs on a bad pain day conspired against me. In the end I had to get Atos involved on my behalf when the DWP cancelled my claim, as Atos had promised me when I called them in tears from the assessment centre that they would send me another appointment. You’re only meant to be allowed one rearrangement, you see, and moving an appointment from another city entirely to one it takes under 4 hours to get to is counted as such.

The assessment, when I finally had it, left me feeling cautiously optimistic. The assessor was a nurse who’d specialised in chronic pain and had actually heard of Ehlers-Danlos Syndrome. He said he wouldn’t put me through the physical examination because he knew how painful the condition was.
Reading the decision letter over I can see now why there was caution in that mood:

“You said that you have difficulties with preparing food, taking nutrition, therapy or monitoring a health condition, washing and bathing, dressing and undressing, communicating verbally and engaging with others face to face. I have decided you can manage these activities unaided.“
It’s just a bit of a kick in the teeth isn’t it? I sat facing the assessor and told him that I’d managed to have a grand total of one bath and one shower completely unsupervised since January, meaning I often go for most of the week without a proper wash (ask me about that time I had to have my new bf to supervise me in the bath before we’d even seen each other naked!), and that I can only cook if someone is there to make sure I don’t fall (not to mention the issues carrying pans, chopping veg, opening jars etc). If I can’t get up on bad days, then I can’t get food, therefore I can’t take my medication. As for getting dressed? My partners learn quickly how to put tights on misbehaving legs. If I’m not leaving the house I just DON’T get dressed. It saves pain and energy.
“I have decided you can stand and then move more than 200 metres”
This was written without actually seeing me walk further than the short distance to the assessment room, on crutches, in pain. That is how I walk: in pain. He didn’t even want to see the letters I brought with me from the GP. Somehow I thought that was a positive thing.

So the next step is to ask for a Mandatory Reconsideration, and call a local disability service for more advice. I’ve checked with a few disability activists I know, and apparently being awarded Zero Points is fairly common – a tactic they use to discourage appeal (after all, it’s not even CLOSE to the minimum number of points needed for any award). It just disgusts me that they do this. I’m angry, and anger makes me want to fight it. Many other people in my situation may get depressed, disconsolate, feel helpless and abandoned. They do not fight. I’m angry for them. This system is incredibly broken if it thinks that only those who are strong enough to fight the decision made against them “deserve” help.