International Day of People with Disability (IDPwD) is today.
“International Day of People with Disability (IDPwD) is a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being. The day also seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.” [more on IDWPwD here]
Here, you will find her post on what the day means to her as well as links to various post submissions from people participating in the blog carnival. Carly’s blog is remarkable for the ballsy candidness and clarity with which she writes about living with ichthyosis (although it is not an ‘illness’ blog – the blog represents all aspects of her life). These two pieces stand out in my memory – the former is one of the best personal blog posts I have read internet-wide this year, and the latter I can really relate to (a little too much):
I’ll be celebrating IDPwD today and tomorrow by participating in a two-day workshop on various pieces of legislation related to disability advocacy and human rights. I feel very lucky for this free opportunity to increase my knowledge in these areas, knowing the training will provide a good introduction and foundation for future activism. My knowledge of the legislation pertaining to the rights of people with disabilities thus far is admittedly basic, despite prior and future plans for involvement with WDV. I want to change this.
I don’t often write about disability or go into great detail about my life on this blog, unless it pertains to a theme or idea I am thinking about. Although disability adds one hour to all the basic tasks I have to do (and two hours to my morning routine) not to mention a good dose of physical pain, I generally don’t think about it. It’s become normal. But I probably should – there is still so much misunderstanding amongst the able bodied about even my well known kind of disability – Spinal Cord Injury (SCI) – and how it affects the body and mind. An injury to the spinal cord can affect everything, to varying degrees, according to the severity, level, and cause of the injury: skin, circulation, bladder, digestion, everything. The higher the injury, the more that is affected, including lung function (which will cause fatigue. So if you are with a wheelchair person and they seem tired, remember you would be too if you could only use your arms and your lungs were restricted). Sometimes when I’m out with people they wonder why I take so long to visit the ladies room. I think they look at me and just think I’m a person who can’t walk. It’s a little more complicated than that, though.
Upon leaving rehab I was given a gigantic white folder full of information on all the different ways I can die or get really sick if I don’t do certain things to take care of my body. My brother and I still find this hilarious. This white folder, though, is my manual for how my body now works post injury, and presents some worst case scenarios about how neglect can lead to rather, serious, scary grown-up outcomes. In my case, routine is not an irritation, it is a life necessity (which is why a “mental health episode”, that disrupts routine, is also physically harmful to me). My spinal cord injury – injuries – are bizarre: the first in ’98 was a very incomplete quad level injury that knocked out the feeling in my left arm, put me in rehab until I learnt how to walk again (in less than a year, like a boss) but well and truly ended my sporting aspirations. The second, in ’06, was unexplained paraplegia, post operation, over a 48 hour period. 6 months after, whilst still in rehab and half asleep, I was disturbed by the sound of a giant moth fluttering against the curtain. I then rolled over, stood up, and flicked it off, and returned to bed. 5 seconds later, I realised what I’d done and buzzed the night nurse with the pink hair to show her my new party trick. Almost 6 years later, I am some kind of weird incomplete quad/incomplete para hybrid. Nothing in my world is every clear cut and straight forward.
I have more mind and body layers than a flippin onion. This means, on the occasions when all my issues are stable, and I am feeling good, because I have an impulsive streak, I sometimes take liberties with my health (i.e. break routine), then suffer a few weeks of negative consequences, weeping into my pillow. As I should, until I damn well learn how to take care of myself and channel my enthusiasm for life in a more constructive and self-regulating manner. When I do take care of myself, though, things are absolutely fine.
Here is a previous blog post that is on disability, and my entry for the IDPwD Blog Carnival – the transcript of a talk I gave earlier this year on perceptions of disability and education. In it, I discuss the confronting nature of acquiring a disability in order to humbly open a broader discussion about how important perception is, as a precursor to good policy, understanding, and social inclusion:
Whilst today we recognise the achievements of people living with disabilities too, it is vital to remember that some disabled people remain on the margins of our society and in dire straits, for no good reason, even in our wealthy country. It was revealed this week that almost one in two people with a disability in Australia lives in or near a state of poverty:
”Fairness is part of our national character and if we adopt the positions in this report there is no reason why we can’t. This is a compelling case for the National Insurance Disability Scheme and the economic and social benefits of providing people with job opportunities are clear.” – John Della Bosca