Disability, benefits, and everything.

[azhure]

Stephanie Burgis, who is an amazing writer, has written a great post about disability and the perception that many people have of those who are reliant upon disability benefits.

This is a subject close to my heart for an obvious reason: I have a disability, albeit an invisible one.  I was reliant upon a disability pension for the period of time between finishing my PhD and getting married (at which time I became financially ineligible for the pension.)

Over time, my general health has improved – because I’ve gotten better treatment, and because the pension and the financial support of my husband has allowed me to take the time I need to rest and to pace myself.  I don’t know if I would actually qualify medically for a pension these days, but I do know that I am still not capable of working a traditional full time job.  Just as I don’t think I would actually be capable of being the sole carer for my son.  Which is, of course, much more than a full time job.

At the time when I was first ill, you probably wouldn’t have noticed.  I struggled through the last couple of years of my PhD part time (and this was only because I had an amazing supervisor who gave me a lot of leeway, far more than most would – he would have been well within his rights to terminate my course of study).  My day looked like this: wake up at 6:30am, groggy from a night of medicated, broken sleep.  Drag myself through the shower, catch the train to work, force self to walk for 15-20 minutes from train station to my place of work (because things were far worse without exercise).  Work at a very slow pace for a couple of hours – really only doing about an hour of actual work at maximum, because my concentration span was completely shot.  Walk back to the station if I could, catch train home.  Arrive home at noon, collapse on the couch for the rest of the day.  Only eat because my mother cooked for me, since I wouldn’t have had the energy to do anything else.

Most people only saw me when I was out and about.  To the world, I probably looked fine.  I could walk (though I was reliant on a cane for a time – I suspect most people just assumed I injured myself, when it was for balance), I could work somewhat.  They didn’t see me crashed out on the couch, in pain and unable to think and sometimes to form sentences.

I’m lucky now, in that most days I am fairly functional.  As long as I’m careful with my sleep and rest and take my medication, I can write, take care of my son (with a lot of help, admittedly) and keep the house mostly clean.  And yet, I suspect that to the outside world, I don’t look any different to when I was really sick.

It’s not always obvious.  And of all of the people I’ve known who have been dependent upon benefits, none of them have been faking and all have been working as much as they could and, if possible, trying to get to a place where they don’t need benefits.

EDITED TO ADD: This is also why I’ve been blogging about my achievements every day again – reading, writing, exercise – to prove to myself and to everyone else that I’m not a slacker who’s bludging off my husband (and would possibly still be the government if I was still single).

Mirrored from Stephanie Gunn.

Comments

[moonvoice]

This was so good to read. I think these sorts of accounts are important to read, and to write, and to share publically to dispel the myth that the majority of people on Disability (or who are disabled in some way even if they're not receiving benefits) don't deserve it or help and support from loved ones, when in actual fact it is just that; a myth.

The guilt experienced by so many of us because we can't contribute the way we're expected to, and because of the burden it can place on loved ones is so crushing as it is. :/ I have so much respect for you for posting this. Well, more, because I already had a lot!