2014 – 10 Positive Things

Tags

,

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.

unwritten, unnamed

Tags

the words unspoken, unwritten, stopped short of their destiny

stick in my teeth and decay and make my gums

bleed the reek of stagnating ideas follows me

around you can smell it on me

my creative fatigue the fear of loosing

the words slowly mouldering in my mouth

n.a.j.Grant 2014

The “privilege” of disability.

Tags

, , ,

(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-

Mantra

Tags

Out of hazy nothingness comes a mantra
sung to the altar of my body.
I hear my name over and over again
until it feels strange and loses all meaning and I stop trying to hear.
With urgent orison you try to reunite my body and mind.
You read to me from my own holy book
tell me my story for fear it has been seizure-shaken from my brain.
I feel your hands, desperate unwanted anchors, on my face and on my chest but my own hands are lost somewhere. My body is tossing in the breeze
like so many dead leaves scattering apart.
Your mantra passes through me and fills me with hopes I cannot live up to
of the person, not the dead leaves no I am leaves now leave me
I will be reborn from this, hollow and intangible and needing no prayer.
This chant is for you, not me. Your elegy to the disappeared name.

n.a.j.Grant 2014