Challenging ‘mainstream’ perceptions of disability (a low key rant, in full)

This is the full version of a “rant” on 3CR’s radio show ‘Intersections’ this arvo (which wasn’t delivered in full for time constraints).  I want to encourage people to unpack and examine their own assumptions about what it means to be disabled; I have to emphasise here that it’s a process I myself have had to go through. I also straight up read a previously published piece on intersectional marginalisation. I’m sick today, not feeling my best, got caught in the rain, but still enjoyed the experience 🙂 Largely because the intersectional feminists on the show are so welcoming and amazing. I’m really glad this space has been created on the airwaves.

 

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Let me just preface this low key rant by stating I am just a regular person who also lives in a disabled body. I have no expertise in disability studies, or disability education… but I do have a load of experience – the experience of being able bodied, and the experience of being physically disabled. I also have a lot of experience going through and recovering from various manifestations of mental trauma and illness… but let’s just stick with the physical for now.

My disability experiences have caused me to radically transform the way I see myself, others, AND the world at large, many times over. I’ve learnt that attitudes, and the way we see – or rather, DON’T see – people, matters a great deal. Attitudes tend to act as a filter of what we perceive to be important. What we perceive to be important influences the agenda. So I want to take a moment to tell you about my experience, and ask you to review the way you see disability and people with disabilities.

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So 18 years ago, I became a very, very incomplete quadriplegic. I sustained a spinal cord injury through illness, that affected all of my limbs, although I could still walk.

10 years ago, I became a paraplegic.

3 years after that, I started calling myself disabled.

Why is this? Why, despite having various levels of physical impairment from the age of 14 onward, did it take me so long to make peace with that 3-syllabic word?

In acquiring a disability, I discovered that I was, in fact, a closet ableist. I discovered that I had unconscious attitudes towards disability, and the disabled. I discovered that I was looking at disability through a particular lens that, I dare say, many people look at disability through.

Deep in my subconscious, becoming disabled was the worst case scenario… something I feared even more than death. And trust me, I have faced actual death more than once in my past.

This is because somehow, somewhere along the line, I, like many people, had picked up the notion that to be disabled meant to be on the outside.

It meant to be someone who was to be pitied.

It meant hardship.

It meant to be segregated from the majority of able-bodied people.

It meant to be deficient in some way, and needing extra help from society, who would benevolently bestow it upon you.

And it probably meant that people perceived your needs, your sexuality, or contribution to society as somehow “different”, abnormal, or depleted.

So when, at the age of 22, I became a permanent wheelchair-user myself, I had to face ALL of those unconscious beliefs head on. And I got to see, for the first time, those beliefs influencing how other people responded to me.

The first unconscious belief to be challenged was my perception of what people with disabilities need. After sustaining paraplegia, I spent 6 months in a rehabilitation hospital. Almost all of the other inpatients were men under the age of 25.

Prior to acquiring their disabilities, they had led active lives, and many had gained their disability in the middle of a physically challenging or dangerous activity.

They were interested in all the things that many young men are interested in – enjoying themselves, finding careers, socialising, relationships, sex… actually, mainly sex. A lot of the conversations I had with fellow patients were about concerns about this particular aspect of life.

In an adjacent assisted living facility I also met a few accident victims who had sustained serious intellectual disabilities. My heart broke into pieces one day when, sitting in the hospital courtyard, a young man from that living facility sat down next to me and proceeded to tell me, as best as he could, how desperately he wanted to get out of that place.

And I realised – really and truly understood – that people with disabilities, whether that disability is acquired or congenital, physical or intellectual, have the same basic human needs as able-bodied people. Like anybody else, we want to be loved, be accepted in society, pursue education, a career, call the shots in our own lives and be independent.

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After my paraplegia I went through the same difficulties in coming to terms with my new reality as the young men did.

There’s a lot more public discussion around heterosexual male sexuality and disability in the mainstream, but I tend to see less coverage about heterosexual women or queer folk and disability. But believe me, it was on mind: I wondered how my relationships would change and even though I had no interest in having children at that point, I immediately started to fret I wouldn’t be able to have them (which, by the way, is absolutely not true).

In rehab, I luckily had a young lady sexual health counsellor to help me cut through the fears about the future I was grappling with.

Apart from the physical realities of having a disability and dealing with our structural institutional exclusion, one of the strangest things you have to face when you acquire a disability, is the reality that many people will now see you differently, and treat you accordingly.

Whether this is a good or bad thing is debatable. But, inevitably, it can have an impact on how you see yourself and your self-esteem, which will impact on your social self and your ability to pursue opportunities in life. And all of this nonsense comes from OTHER PEOPLE.

Facing the reactions and perceptions of others about my self, my life, and what I was capable of, led me to review some of my own attitudes towards people with disabilities.

I had always considered myself progressive in this regard, BUT, like so many, I realised that I had been operating with the same tendency towards pity for or over-admiration of people with disabilities.

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That is not to say that disabled people should not be admired, or given props for negotiating a messed up planet that does not really want US in it.

But that mindset too often leads to the objectification and disempowerment of people with disabilities. You are either seen as a brave and tragic victim or must aspire to some “super-crip” disabled iron woman ideal so you can feature in some “inspirational” meme that shames able bodied people about everything they are not doing with their privilege. 

Becoming disabled myself forced me to move from that mindset, which I now regard as damaging to the wellbeing of disabled people, to a place of RESPECT and empathy.

But… REAL empathy; not empathy based on ignorance and faulty assumptions of the supposed tragedy of disability.

Those unconscious ableist assumptions need to be unpacked and expunged first.

The best way to do that, other than googling the “social model of disability”, is to LISTEN to what a variety of disabled people have to say about their own realities.

It is only then that you may be able to even begin to imagine, let alone understand, what it is like to be disabled in an ableist world.

And an exercise in true empathy will inevitably lead to the thought: “If I were that person, what would I want? Would I want to be pitied or patronized? Would I want to feel pressured into being some kind of super hero disabled figure in order to be noticed or respected? Would I want to be segregated in “special” spaces?”

Or would I just want to live my friggin life the way I see fit, be independent,  access all public spaces like able bodied people do without a worry everyday, have the same educational opportunities, and live a life free of discrimination and marginalization?

I’ll let you think about that.

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International Day of People with Disability

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]

Television Presenter, blogger and writer Carly Findlay  has launched this initiative to celebrate IDPwD – she is hosting a blog carnival on her Tune Into Radio Carly blog:

http://carlyfindlay.blogspot.com/2011/11/international-day-of-people-with.html

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):

Untouched

Tiptoeing and avoidance

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:

https://paulinevetuna.wordpress.com/2011/08/06/challenging-mainstream-perceptions-of-disability/

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:

Disabled life quality ‘worst in developed world’

 ”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