Tag Archives: disability

Zero Points – the PIP nightmare continues

28 Tuesday Apr 2015

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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.

Silent stares and rude questions: the disability minefield.

15 Wednesday Apr 2015

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We need to talk about something faced by disabled people every day: the attitudes of strangers. Not remarks, not discrimination, but the silent stares.

There’s no question that everyone gets judged on their appearance by those they pass in the streets. Something that makes you stand out will attract attention be it crutches or a strange hairstyle. I’ve been there pre-disability: bright obnoxious pink white and orange woollen dreadlocks paired with multiple facial piercings. Then I revelled in the stares (two fingers up to society? oh teenage me), but now when people look at me struggling to walk with crutches, hiding behind nothing, it feels like the stares are piercing my skin. I attract attention for the “wrong” reasons, those beyond my control, yet I feel no pride in my appearance now. There’s nothing worse than passing a chattering group of friends on the tube platform, for them to go silent, watch me pass, then start up again in hushed tones once I’m out of earshot.

On a Facebook-based support group the other day, I saw a woman ask why so many of us posting have negative or angry responses to strangers asking questions about our crutches or wheelchairs. She suggested that we should embrace the questions, and use it as a chance to educate people about a debilitating and under-diagnosed condition. This met with a mixed response from the rest of the group, and sowed the seeds of this post in my mind.
Ideally, if a stranger approached me and asked me “Excuse me, do you mind me asking why you walk with crutches?” I would give them a polite, concise but informative answer. But that is of course just hypothetical –  they DON’T tend to ask that question. I get “What’s wrong with your leg/legs?”/ “What happened to you?”/ “Aren’t you too young to be disabled?”. None of these require acknowledgement, let alone dignifying them with a response (although I did once end up getting a major charity’s entire street-fundraising team retrained in their appropriate opening gambits, of which “Woah, what’s up with your legs?” is NOT one).

And if the hypothetical polite and considerate question is asked? I am probably not in any mood to answer it. And here’s why:
I call it the Triangle Of Doubt. I experience it almost every time I go out. Their eyes go first to my crutches (disabled!), then my face (young!) then my legs (not broken!) and around again, the frown becoming deeper. Something doesn’t add up there. They try to work out which bit is wrong. Too young to be disabled? Faking? Fashion accessory? Benefits cheat? Should she be out alone?
What this mostly amounts to is I get frowned at by strangers who’ve been staring at my legs. And it adds up. I end up trying to avoid eye contact.
So, usually by the time someone comes up and asks me a polite question about disability, I have had x-number of the above microaggressions and my patience has run out.

Generally I really dislike being asked about disability when I’m out in public by complete strangers who only want to satisfy their own curiosities*, but I’m happy to educate people about Ehlers-Danlos syndrome and chronic pain over the internet, but in my own time and when I’m able to, but this is the key point: you cannot demand personal information from people and expect to be given all you want then and there. Disabled people may be dealing with chronic pain, exhaustion, and the effects of strangers’ attitudes and even politely asking could be upsetting or met with a snappy response. Consider this next time you feel entitled to approach a stranger for details of their life. Although you might be lucky and get one of the small percentage who don’t pick up on the microaggressions.

And, for the record, the correct response to “What’s wrong with your legs?” is “What’s wrong with your manners?”.

*exemption given to medical professionals because EDS is really undertaught and we often have to be our own experts and teach our own doctors!

The “privilege” of disability.

09 Tuesday Dec 2014

Posted by in Disability

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(Bear with me for the vaguely disjointed writing style. Brain kittens are extra active today and it’s been difficult to keep a train of thought.)

With two recent headlines about disabled access to public services, the audit of shop accessibility and the wheelchair space on buses case, there has been a lot of talk recently in non-disabled spaces about the rights of disabled people (and what they should or shouldn’t complain about or campaign for).

On a discussion on a friend’s Facebook page where they posted up the latter story, a non-disabled person commented with something along the lines of “disabled people have privilege because there are special measures made for them” (not exact wording because my friend got upset and deleted the whole post before I could copy it).
I would argue that there is a privilege structure within the model of disability itself, but that disabled people as a section of society do not have privilege. Having special measures put in place, such as ramps to shops and a reserved area on the bus for wheelchairs is not a privilege but a means to access the same public services as the majority of the population. It’s not a privilege to have laws protecting you from being discriminated against; it’s a sad fact that these laws don’t seem to stop disabled people from being on the receiving end of abuse and anger from others anyway.

Disabled people are a protected minority and this affords us the privilege of being shat on from all sides. The government cut our services to save money instead of increasing taxation (only one hearing aid for bilaterally deaf people, cuts to local travel passes, social services care hours cut…), but try to focus the disenfranchised rage of the working class masses onto the disabled population by scaremongering about the amount of fraudulent disability benefit claims (as opposed to, I don’t know… MPs’ expenses?). In turn, disabled people are viewed as “scroungers”, “spongers”, a “drain on resources” by the rest of the struggling population. And if you are disabled and CAN work? Why are you even claiming any extra money at all then? If YOU can work (as a disabled person) then why can’t every other disabled person?
The link to the BBC news site’s article about the recent bus rulings is at the start of this ramble. I read the comments (never read the comments). Here are some (unpalatable) gems:

“If disabled people can do olympics they can wait for next bus. A child should always come first !”
– ah, the legacy of the Paralympics continues to haunt those of us with disabilities who are not also athletes (I believe that’s most of us)

“Whilst sympathising greatly with wheel chair users where will it end?”
– aka “i’m all for equal rights but they’re getting a bit too noisy about it now”

“Can’t they just use their mobility payments to use cabs?”
– not entirely sure this person realises that mobility DLA/PIP component is not really enough for an on-call chauffeur

Then there’s the usual slew of “but they get free cars” (I don’t think you understand how the Motability scheme works), “they wanted equality, this is equality” (no, it’s not. not when a non-disabled person could have gotten onto the bus and sat down – equality isn’t about everyone being treated exactly the same, it’s about giving marginalised groups the tools they need to achieve equality), “loads of people who use mobility scooters aren’t disabled just obese” (cause and effect mix-up here – when you can’t exercise due to disability or illness you do tend to put on weight).
And my favourites: “confined to a wheelchair”, “wheelchair-bound”, “stuck in a chair all day” *screams* that’s for a rantier post about disability binary that many people have already written much more effectively than I ever could.

But despite the “privilege” of having complete strangers being able to judge us on just about any aspect of our lives, from “helpful” dietary advice (no it will not make one iota of difference to my shonky collagen if I went gluten free) to whether we are REALLY disabled or not based on their extensive medical training and knowledge (which seems to trump any actual specialist opinion), we are a protected minority – like a flock of rare bats nesting in a crumbling old church that the council really wants to demolish but can’t because BAT PRIVILEGE.

And now I’m stuck on the bat simile and can’t write sensibly any more.

-abrupt finish-