Challenging ‘mainstream’ perceptions of disability (a low key rant, in full)
Posted by Pauline Vetuna
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.
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.
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.
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.
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.