Challenging ‘mainstream’ perceptions of disability

I delivered this talk to a group of stakeholders, local government people and educators this week as part of a seminar series called Ideas that Work, being run by Brimbank Community Learning Strategy. The topic of this seminar was “Delving Deeper into Diversity: issues in lifelong learning and education” and I was asked to discuss perceptions of disability, with the assumption that perceptions inevitably influence approaches to education and integration.

Ladies and Gentlemen, when I was asked to speak to you here today, I wasn’t really sure if I had anything to offer by way of insight. I have never worked for local government, have no qualifications in policy, and I’m pursuing an education in creative screenwriting and, eventually, hopefully, media and community activism, after many years of being in the wilderness of mental and physical illness. I’m just a low key, regular person with a passion for writing who happens to have a disability. I have no expertise.

What I do have, however, is experience and a writers eye – the experience of being able bodied, and the experience of being disabled. My experiences have caused me to radically change the way I see myself, others, and the world at large, many times over. In a relatively short space of time.

I’ve learnt that attitudes, and the way we see – or 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 today, I want to talk to you about my experience, and ask you to review the way you see disability and people with disabilities.  

~~~

13 years ago now, I became a very, very incomplete quadriplegic.

5 years ago, I became a paraplegic.

Only 2 years ago, though, 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 disablist. I discovered that I had unconscious attitudes towards disability, the disabled, people with disability. I discovered that I was looking at disability through a particular lens that, I dare say, many people look at disability through.

And I discovered that somehow, somewhere along the line, I, like many people, had picked up the notion that to be disabled meant to be on the outside, in a separate group. 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 lifestyle, your needs, your sexuality, or contribution to society as somehow “different”, abnormal, or depleted.

So when, at the age of 22, I became permanently wheelchair-bound 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. Most 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 young men are naturally interested in – enjoying themselves, travelling, finding careers, socialising, relationships, sex, sport.

In an adjacent assisted living facility I also met a few accident victims who had sustained serious intellectual disabilities. It made me sad one day when, sitting in the 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, I mean 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 find love, be accepted by our peers and society, pursue education, a career, call the shots in our own lives and be independent.

It was not the first time I had been in a rehabilitation hospital. The first time was actually when I was 14. That time, though, I was the only in-patient under 40. All the other in-patients were stroke victims – mostly elderly, learning how to speak again. But the lesson I learnt then was the same – everyone there wanted to understand, be accepted, be part of the community, and have a measure of independence.

~~~

After my paraplegia I went through much the same difficulties in coming to terms with my new reality as the boys did. Though the only young woman in there, I found a young female sexual health counsellor to be a great sounding board for the issues I was grappling to come to terms with. Apart from the physical realities of having a disability, 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.

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. Becoming disabled forced me to move from that mindset, which I now regard as a serious impediment to integration, to a place of empathy.

Empathy is sometimes disregarded or undervalued because it is seen as subjective in nature. But as an aspiring writer, I am a huge fan of EMPATHY. 

In my humble opinion, It is the great equaliser, because it is about seeing the humanity in others – seeing yourself in others – including in those who, on the surface, are not like you. Empathy is about understanding where other people are coming from. And exercising empathy inevitably leads to the thought: “If I were that person, what would I want? Would I want to be pitied or patronized? Would I want to be segregated, or be regarded as “different?”

When I first asked myself this question, the answer was a resounding NO.

And, as I’ve begun to meet, listen to and interact with other people with disabilities, notably with some people with congenital disabilities, I’ve come to realize that it is actually a fairly popular view.

~~~

Many of you might be aware of the ABC’s Ramp Up website, which was launched last year on International People with Disabilities Day. The aim of the site is to ramp up debate about disability in Australia, and it features articles and opinion pieces written predominantly by people with disabilities. Any of you who have perused the website yourself will have noticed vibrant debate in the comments section under these opinion pieces – debate that often spills over onto Facebook, Twitter, and the blogosphere. Given the nature of the medium, the internet is the perfect place for many people with disabilities to connect, exchange, debate, organize, and express their opinions.

Todd Winther, a Brisbane based PhD candidate in political science and university tutor, wrote an amazing opinion piece last year about his encounters with disablism of the patronizing/pitying kind in a piece called “Are you defined by what you can’t do?” I will read the beginning of it here:

[please follow this link to read the introduction up to “That story sums up my life.”]

Todd Winther, you see, has cerebral palsy. He goes on to criticize “advocacy groups” who try to inspire pity by using stereotypes of helplessness and disability to attract support for their causes. Furthermore, he expresses discontent with groups that try to bring people together solely based on their common disabilities, despite the fact that they may have seldom else in common. Whether he is right or wrong is of course debatable. It is, after all, an opinion piece.

But until reading his article, I had never considered this perspective before.  I am sharing it here with you now because I think Todd’s point-of-view is in fact shared by many disabled people.  And I think perspectives like this can and should be factored in when we think about education for people with disabilities, and integration. They have to be. People with disabilities are the ones who are most affected by the consequences of education policies.

~~~
And it isn’t just us people with disabilities who lose when society excludes or patronize us. Our society is poorer for it too. Stella Young, writer, educator, comedian and Editor of Ramp Up expressed an alternate point of view in an Op Ed piece, titled Don’t Dis My Disability. Ms Young has a genetic condition and is a wheelchair user. In contrast to Todd Winther, she embraces her disability and the “disabled community”, regarding it as a rich and diverse community with much to offer the broader population – a population that is simultaneously discriminating against them. Our society undervalues and excludes the people in this community to its own detriment.

On her disability, Stella says:

Learning about the social model of disability ramped up my sense of pride in who I am enormously. It’s the belief that disability lies not within your body or your brain, but within society. So in my case, I’m not disabled by the fact that I can’t walk, but by the steps that prevent me from getting into a building.”

Further on she says:

Calling myself a disabled person makes me feel empowered. It reminds me that my disability isn’t about my body, it’s about the barriers I face in my life. It drives me to work towards breaking down those barriers.”

To Stella, her disability is something she is immensely proud of. It is also something that gives her and other disabled people perspective that perhaps the able-bodied population lack, and would benefit from hearing and understanding. For example, by merely having a pronounced physical difference, Stella gets frequent insight into the awkwardness of able-bodied people when in the presence of a person with a disability. I can attest to this myself. Disability does bring out strange things in people. It also illuminates many of the blind spots people have in regards to all kinds of disability. In regards to simple access issues, I am still baffled when people who know me try to take me to venues that have multiple stairs, and who are then genuinely surprised when they “remember” I can’t use them. Despite the fact that disability does and will affect a huge percentage of the population, able-bodied people just don’t think about these things. I know – I used be one of them. Similar blind spots exist in regards to other types of disabilities. This lack of awareness or consciousness is a huge barrier to integration and social inclusion.

Stella’s views have been greatly influenced by the late disabled activist Jenny Morris and, in particular, her book “Pride Against Prejudice”.  Jenny advocated the notion that it is okay to acknowledge that you have a disability, and that society discriminates against you because of it. For sure, in purely physical/medical terms, disability is indeed a deficit. Yet it is often external physical buildings and spaces, and deficient prejudiced social attitudes, that are the most disabling thing.

Both Stella and Todd’s opinion pieces generated much debate on the Ramp Up forum and on social media. The responses were varied, but both received much support for their points-of-view from other disabled people. Though they differ in their views on the so-called “disability community”, and on their own disabilities, both agree on one thing: that pity, or patronizing attitudes, and the policies that perpetuate these attitudes, are counterproductive to “normalizing” disability and breaking down barriers to integration in society. These barriers are external; raising the consciousness of non-disabled people to recognize their complicity in perpetuating these barriers is essential to eliminating them. So disability education needs to be about educating able-bodied people to see disabled people as their equals, and to see disabled issues as their issues too. One of the best ways to encourage that is to socialise and educate disabled and non-disabled people together.

~~~

So, what does all of this have to do with Brimbank’s learning strategy?

One in five residents of the City of Brimbank is affected by some form of disability, with higher proportions of people with complex physical and mental health needs than the Melbourne metropolitan area. The numbers are set to increase with an aging population.

The learning strategy recognizes the importance of engaging people as early as possible in various types of social learning, and at all stages of the life cycle, for the well being of the community, individual well-being, and greater economic opportunities for all. This is especially true for young people with disabilities, who may experience difficulties in entering the workforce because of their disability.

Moreover, thinking long term, If we are serious about true inclusion of people with disabilities in education and breaking down the social and attitudinal barriers they face in society, we absolutely need to get to a point where we truly start seeing people with disabilities as normal people who, through no fault of their own, face barriers to inclusion that we as a collective will benefit from eradicating. And we must. Because if we don’t, we will continue to miss out on all of the things that people with all kinds of disabilities can contribute to enrich our communities.

The Brimbank Community Learning Strategy (2010-2013) is available to read/download here.

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4 Comments on “Challenging ‘mainstream’ perceptions of disability”

  1. Susan A. says:

    That is actually a really thought-provoking speech. You did a great job explaining why people need to think about disabilities in a different way. I imagine wanting to be treated as normal would be one of the big things to cover. Just today I watched that movie “Soul Surfer” and it showed how people looked at Bethany Hamilton after she lost her arm. In her case, she could still walk, but she discovered a lot of other difficulties with not having two hands. Even getting dressed was a challenge for her. Yet it seemed one of her biggest goals was to be treated equal and normal, despite her disability. It was a really inspiring movie.

    Thanks for sharing your perspective 🙂

  2. Emeretta says:

    Pauline, your work is pure inspiration, thanks for sharing your thoughts. Poignant and purposeful. cheerio “M”

  3. […] 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 […]

  4. […] 5.    Challenging ‘mainstream’ perceptions of disability (Pauline Vetuna) […]


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