• About Me
  • Contact
  • Links to other stuff I’ve written
  • Useful Links

Nina Childish

~ and various brain kittens

Nina Childish

Category Archives: Blog

Zero Points – the PIP nightmare continues

28 Tuesday Apr 2015

Posted by ninachildish in Blog, Disability

≈ 4 Comments

Tags

benefits, disability, personal

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

Posted by ninachildish in Blog, Disability

≈ 5 Comments

Tags

ableism, disability, microaggressions, rant

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 *click* of sexual harassment.

01 Sunday Feb 2015

Posted by ninachildish in Blog

≈ 1 Comment

Tags

personal, rant

Oh blog, I had such hopes for you. I will write once a week, I promised myself. Even if it’s just sketchy poetry. Then a fatigue crash happened in late December and I currently struggle to piece two coherent thoughts together one after the other, and don’t even try linking them eloquently. I will come back to this properly, it might be a winter darkness thing, or it might be the Mystery Heart Condition or just “hey you have chronic fatigue, this is just what you do”. But I’m not abandoning this one, even if I’ve already taken a small leave of absence.

I’m here today to rage about insidious sexual harassment.
It’s not easy for me to leave the house right now. It requires forward planning: estimating my energy levels, timing painkillers correctly and working out which of London’s many stations are accessible enough. I failed on the last front yesterday evening and found myself changing trains at Finsbury Park – which necessitated climbing a flight of stairs. I do not generally do well on stairs, it’s usually slow going and often painful and I’m concentrating hard on both coordination and not passing out. Still, I recognise the click of an iPhone camera when I hear it.
That’s a bit odd, I think, who would take a selfie on the stairs at Finsbury Park?
Then it hit me, as a man pushed up the stairs past me, with his phone in his hand, the screen still set to camera. That man has just taken a picture of my arse. Or up my skirt. 

There is a control room at the top of the staircase where the North and Southbound passages intersect. I fully intended to be late to meet my friend in order to report the guy right then and there, but as I reached the top of the stairs I realised he was right there, leaning against the wall of the tunnel, looking at his fucking phone and I got so freaked out that I just got the hell out of there as quickly as I could manage.
Once I was at the pub with my friend, I couldn’t get comfortable for a long time. The idea that some stranger had taken a photo of me without consent for sexual gratification made me feel really gross and upset and anxious. It felt like a part of me had been taken without my consent.
I started fretting about going home and going back through the station, and eventually asked my friend to come back with me. Having him there made me feel brave enough to stop at the control desk and tell them what had happened earlier. They called the British Transport Police and we were taken to the station next door to make a statement. It’ll go down as intelligence, so they can build up a pattern of this guy if more people report him, if he’s a repeat offender for this kind of thing.

I feel the need to stress the importance of reporting even minor harassments such as this if you feel able to. The trend for photographing women without their consent is really disturbing – from numerous Facebook groups for posting pictures of women in nightclubs (“Sluts Embarrassing Themselves” famously took weeks to be closed), to Women Who Eat On Tubes (misogynistic AND food shaming!) and it’s totally media-endorsed – how can someone taking a photo of me be any different to a paparazzi photographer shoving their camera up the skirt of a young actress as they get out of a cab? We’re viewed as public property. We’re on show, so why can’t people take home a souvenir? I’m incredibly pleased that it’s being taken seriously by the police, even if it’s not a serious crime. It’s insidious, creepy. Most women who are photographed like this probably don’t even realise it’s happened at all – even when the cameras make noise it’s hard to hear when you have headphones in, or when there are lots of people around.

I’m just thankful that I probably won’t be travelling that way through Finsbury Park again, thanks to the stairs.

(It’s worth noting that up-skirt shots were apparently such a problem in Japan that you cannot silence the shutter click at all on Japanese iPhones, and there’s no in-camera mute function on any iPhone.)

2014 – 10 Positive Things

02 Friday Jan 2015

Posted by ninachildish in Blog

≈ 1 Comment

Tags

personal, positivity

2014: The Review. I challenged myself to list 10 positive things about the year, despite it containing pain, disability, mentals, difficult parents and a lot of self doubt. It wasn’t so hard to find things, once I started including positive sides of seemingly-negative things.

1. I was diagnosed with a disabling genetic condition affecting my joints, muscles and autonomic system. Why is this actually one of the best things that’s ever happened to me? Because I’d had symptoms since I was 12, and it took me 16 years of doctors telling me it was “growing pains” or to “try swimming” before a terrible 2 months almost housebound with fatigue propelled me to push for a proper diagnosis. Now I have a diagnosis of Ehlers-Danlos Syndrome I can access specialised therapy and appropriate support, even if it’s slow going at times.

2. I read 45 books. This might seem like a trite goal, but a few years ago when I was really depressed I struggled to concentrate long enough to read a chapter of anything in one go. Having a commute again has really helped because I usually feel the need to escape into somewhere not on a tube carriage.

3. 2014 has been my best year yet for socialising and relationships. At the start of the year I challenged myself to overcome social anxiety a step, by making friends with someone and actually see them socially (rather than relying on Twitter/Facebook which is what I tend to revert to) and I managed this with several awesome people. When I moved back to London in 2013 I got depressed at first because people who I thought were my friends were no longer interested and the scene seemed very cliquey, I got discouraged and self-hatred about my social awkwardness reared up. I am so glad that I seem to have broken free of that cycle now and have found myself an excellent group of pals (who don’t mind social awkwardness)!

4. And relationships? Near the start of the year Dennis and I decided to try polyamory (aka ethical non-monogamy) to see if it would help strengthen our own relationship while giving us both some more fun. It did. It does. We also hit 2.5 years together (!!), and for the latter part of the year I’ve had a wonderful beautiful girlfriend as well. Honestly, I couldn’t be happier with this part of my life.

5. FAT AND HAPPY IN 2014! Despite a few episodes of body-non-confidence (spending a month on a sofabed unable to move will usually lead to weight gain), I didn’t diet at all last year as vowed. I gained weight through illness, made my mind up to be happy with it, bought some new clothes, and look pretty good naked. Goal achieved!

6. I started writing again. In December wrote my first poem in ten years and it had a positive response. I need to stop being so scared of failure and just let the words out. Blogs, poems, essays… anything that hones the skill and has me practising concentration on top!

7. I didn’t drink as much alcohol as I have in recent years. Sure, it’s mostly connected to the fact that I can’t handle as much now without feeling extremely tired (thanks, body) but I can still feel good about it – mostly because this means less hangovers.

8. I’ve had a better handle on my mental health this year. I’ve continued to learn to recognise the warning signs of a mood crash, or a building manic phase and been able mostly to stop them getting as bad as they could have been. With depressive crashes and anxiety, I got better at asking for help and support, and at making emergency self-care plans.

9. My dad let me move into his flat when my mum kicked me out. There are some ongoing issues (mostly the fusebox being in the cellar and me being physically unable to unpack/tidy up properly), but I’m extremely grateful to be able to live here rent-free especially as it’s a ground-floor flat.

10. I spent time with some excellent cats.

with an excellent cat.

with an excellent cat.

Newer posts →

Support me on Ko-Fi

Buy Me a Coffee at ko-fi.com

search the blog

Categories

Recent Posts

  • Access Review: Donmar Warehouse
  • Being the football.
  • The Medication Postcode Lottery
  • The Accessible Home Project pt1: The Stairlift
  • burning

Tags

ableism access accessibility Accessible London access review Activism aids and adaptations anorexia anxiety beauty benefits borderline personality disorder bus buying tickets campaigning chronic fatigue chronic illness CMHT complaint coronavirus council crip the vote depression diagnosis disability disability services DWP eating disorder ehlers-danlos syndrome ESA eviction Family fuck tropes general election gp Hamilton health heart failure Housing hypomania incompetence London managing chronic illness Mental Health Mental Health Awareness Week mental health services microaggressions money policing mother news New Year's Resolutions nightmare personal pip poetry positivity powerchair privilege product design product review rant recovery relationship self pity shopping sleep apnea social anxiety suing a bus company theatre therapy Tories transport wheelchair wheelchair access work capability assessment

Website Powered by WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Subscribe Subscribed
    • Nina Childish
    • Join 133 other subscribers
    • Already have a WordPress.com account? Log in now.
    • Nina Childish
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...