Saturday 8 July 2017

When you know better, do better.

[Image: black typeface on pink background. Words say Do the best you can until you know better. When you know better, do better. Maya Angelou]

Saturday morning I quickly finished off a new post. The culmination of years of frustration sparked by one of those "straw that broke the camels back" moments. I pushed Publish, hopped in the car and drove to Melbourne to be on a panel as part of The Emerging Writers Festival. I caught a couple of the responses on Facebook, but didn't really look at any of my social media platforms, and no email, until today a week and a half later. My post-travel body is still drifting through the many stages of payback that accompany such trips. And my brain is still thick with exhaustion and looming migraine but I decided I could manage a short time of screen glare. Well if I closed one eye and tilted my head to the side. And could keep down coffee. Much much coffee.

Putting up a post that is a bit more confrontational does come with some predictable risks. You know that it will polarise readers. You hope that it may change some minds. Or at least sow the seeds to begin questioning the status quo. My use of YOU was designed to hit hard. It's difficult to put up the usual cognitive distance that allows a reader to deflect uncomfortable messages when each line addresses you specifically.

Some rose to the challenge. Some did not.
  • The largest number of responses gave me an internet high five. There are a lot of tired disabled people and allies for whom my words resonated. 
  • There were the predictable number of people who's responses ranged from "you hurt my feelings" to "I'm never going to help a single disabled person ever again" to "Fuck you, you ungrateful bitch." 
Then there were the group that give me the greatest warm and fuzzies, and leave me with hope for change.
  • Those who were left feeling really uncomfortable after reading my words, but wanted to know more, who wanted to do better. Who at first sat back shocked. Then processed their feelings and responded with openness. Who approached an emotional and intellectual challenge as a moment to learn. 
In many ways I feel this last group are my people. I am learning. Or perhaps I should say unlearning and learning. About disability, about ableism, about inter-sectional perspectives, about my place in the community and the world at large. I certainly don't get it right all the time. It can be uncomfortable to have that pointed out. But if you are truly open to learning, and positive change, you have to become comfortable with feeling uncomfortable. And if you consider yourself an ally to the disabled community, you have to listen to our voices even when those voices makes you feel sadness, anger or guilt.

I grew up in a very conservative household. One with little in the way of self-reflection. I pushed against it thanks to two extraordinary teachers I encountered in high school, but as kids often do, I mostly toed the party line. After moving out of home at 17 and finding a new world both complex and beautiful, I began a process of growth. One that continues to this day and will continue for the rest of my life.

A lot of that growth was painful. But challenging the safety of a very certain and concrete world view is always going to be tough.

There have been some big changes over the years. World views that are now polar opposites to those with which I was raised. In a way they were obvious and easy.

It is when you believe you are already enlightened about a certain issue, only to realise you have but scratched the surface or may, despite your best efforts, have gotten it wrong, that the real work begins. And it is work. You have to engage. To read. And read. And read. And listen to the words of those with lived experience. And uplift and promote those voices over your own. It takes time and effort. It is frustrating. And will make you recoil at points. Though the recoil is more often at the safe self-image or beliefs you have held, than the new information with which you are confronted. It's tough work. But work that must be done if you want to be a half-way decent member of what is now a global community.

Through the process you need to keep a few things at front of mind:

No one is going to give you a pat on the back for your work. 
Nor should you expect them to. 

It is not up to marginalised groups to educate you. 
It is not up to them to suppress their anger.
To be grateful
To reframe their lives to make you feel comfortable.
Give you a gold star for being 
a decent human being.

This goes for all of us, including myself. For 44 years I have worked and continue to work. That's part of the human experience. The more I engaged with other people, people with life experiences outside my previous frame of reference, I had to reprocess my views. I had to listen.

In reality I did have a choice. A choice to withdraw to a safe bubble that reinforced my existing beliefs. I could choose to be selective in what I read and with who I associated. That's the easy and comfortable path. A path many take. But a path I chose to reject.

It was uncomfortable at times. There was a level of guilt that threatened to overwhelm. How could I have thought that way? Why did no one tell me there was another way? It is challenging to think you know how the world works, and then find there are a billion other worlds you had no idea even existed. And, that your view is kind of shit.

I type here realising how far removed I am from my childhood and how thankful I am for the often painful change it has taken to get to this moment in time. I know my education is far from complete and many more uncomfortable times remain in front of me. I know I need to centralise and prioritise the voices of those with lived experience from a wide range of communities, many of whom I am yet to meet. I need to listen. Really listen. To sit aside my beliefs, examine my privilege, and take on board new information when it arises. If I find there's another way to move through the world, a better, kinder and fairer way I have to incorporate that into my world.

As the saying goes,

"When you know better, do better."

And the next time you know better, do better once again.

And the next time, and the next....

And so we come back to disability. The way society reacts to disability and when disabled people speak, continues to be quite shit. And that needs to change. I am a product of that societal discourse. And trying to reconcile myself, illness and disability has been incredibly tough because of the pity/tragedy/overcoming/bad vs good, disabled person narrative and the way we internalise those negative messages as truth.

The Social Model of Disability: The social model sees  ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others. A social model perspective does not deny the reality of impairment nor its impact on the individual.  However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity.

I worked in health prior to becoming ill, yet I had never heard of The Social Model of Disability or terms like Ableism and Internalised Ableism or Intersectionality. Instead The Medical Model which concentrates on impairments and paternalistic views, dominated discussions. And whilst I prided myself on patient-centred practice, I realise now as a patient and disabled person, that my professional and personal ideas on the topic are very different. There are elements of life with chronic illness and disability that I would never have even considered as I did not know they existed. My good intentions fell short. Not that I knew. If I could go back now I would change my practice but it shouldn't take personal experience to create that change. I wish the push for patient and personal narratives had been as powerful at the time as it is now. Because lived experience brings a truly unique perspective that should be guiding both medical and disability narratives. That should be guiding the discussion in the media and society at large.

It was not just my work environment and tertiary education that was lacking. I also had a lifetime of messages around disability and illness threaded through my being, many of them were on speed dial in my head. Every new moment of illness, every new need for help was influenced by those lessons. And I have spent much of the last 10 years untangling them and the harm they have caused.

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. (Source) 

As a child I was sick. Pain and fatigue, amongst other unsavoury symptoms, were a constant companion from the first day I woke up aged 12 unable to bend my inflamed and swollen hands. I internalised the messages from family, teachers, school friends and doctors that I was weak, morally and physically. I knew I didn't have a real illness, and should shut up and suck it up. Real illness and disability were easy to spot and should be treated with equal parts pity and tragedy. I didn't make the grade with my weakness. Not even worthy of negative illness and disabilities narratives, just derision and constant reference to my pathetic inability to just 'Harden up, Princess". Blame and illness went hand in hand. Even in the classroom when I was unable to take notes or participate in PE, there were no accommodations. I was informed, subtly and often overtly, that I was a pathetic inconvenience.

Internalized Abelism: A practice where disabled people internalize the ideas and prejudices of society that see disability as ‘other’, as something undesirable, as tragic and as something to be shunned if not pitied. This in turn results in the disabled person loathing themselves and their bodies. They inherently see themselves as lesser human beings....(Source)

I held onto those lessons each time illness came my way. I now have the name to describe my experience, Internalised Ableism. And there's nothing like whipping up those negative disability and illness narratives into overdrive, and spending my days and long sleepless nights, in self-flagellation. When in my early 30's my genes really kicked in, I relentlessly beat myself up with those lessons. I thrust the cruel words of my youth at myself and as much as I'm loathe to admit it, at others. Thank goodness for therapy. I'm grateful every day that I took the leap and embraced the process. But I still struggled with seeing my experience clearly. I had finally started to work through a lot of my baggage related to illness but disability was something that I couldn't connect to. Something I didn't feel I had a right to connect to. Even as my level of functioning continued to decrease and I was disabled by both my body and the world around me, I was unable to connect the dots.

Internalised Ableism is a cruel beast. One I am still taming.

And it's a burden that none of us should have to bear.

It took meeting some incredible disability advocates to point me towards a different way of looking at both disability and illness. And in turn myself.

I read their words. I availed myself of the wealth of information available on the internet. I read and I listen. Again and again and again. I did, and continue to do the work. I still don't get it all right and I still struggle with certain concepts, but I don't turn away. We are a diverse group, with diverse experiences and beliefs. And it's a lot to process. Ideas around Intersectionality have also come to the fore in recent years. It's a lot to unpack and learn, but again I read and I listen. Because I want to be my own ally, and an ally to others in the community.

Intersectionality is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another. The concept first came from legal scholar KimberlĂ© Crenshaw in 1989 and is largely used in critical theories....(Source)

There are amazing disabled people whose voices I needed to hear. They challenged me (continue to challenge me). So often there'd be an element of what they said that in challenging, also articulated my experience in ways that I had never been able to express before. In ways that made my experience make sense. And that has been a gift. A gift I want for others. For those who want to be allies and for those who are part of, or will be part of, the disability community.

I am a proud disabled woman today thanks to those who have shared their words and their experience. 

Disability advocates are writing about their experience, attending conferences, and providing education services. Online communities abound as do personal blogs. If you consider yourself an ally you need to engage. The information is there waiting for you to access. Don't wait for or expect us to educate you. You are but one in a relentless wave of questioners and the emotional labour demanded is exhausting.

I choose to challenge and learn for myself, for my children, for all those who still struggling. I choose to challenge and learn for myself that all our efforts combined can one day change the narrative around disability. That others will one day not experience the same harm. I choose to share my voice, my angry and frustrated words, that others may also feel confident to raise their voice and also share their experience.

And I don't apologise for sharing those words. For sharing my truth.

I understand what it's like to have your views challenged. To have to acknowledge your privilege. To feel the first uncomfortable creep. It feels very personal and challenging. I've been there. We all have.

But that is the point where you can choose to listen and learn, or choose to turn away.

That's on you, not me.



  1. Replies
    1. I'm going to take that as a positive "WOW!" :)

  2. I find myself thinking about this a lot. As good as my intentions were in the past, I had some ideas about disability (well everything really) which were pretty crummy. I can look back at them with shame but I'm sure I still hold some equally crummy ideas which I'll look back on in 10 years and cringe.

    I reckon one of the best qualities a person can have is openness to experience, not just your own, but from people you might not have thought to listen to in the past, people whose voices you have to seek out. People who might have a different view to you which makes you uncomfortable and forces you to rethink your perspective.

    I still get it wrong a lot of the time but I'm pretty lucky to have friends who are a whole lot better educated and cleverer than me who can tap me on the shoulder. And I have this stupid saying that I keep reminding myself of, "wokeness is a process" haha

    Love this post and the preceding one x

    1. I think the cringe is something we all experience and you're right in another 10 years we'll all probably look back and cringe again. But that cringe is representative of learning. These days it feels like the political landscape is evolving rapidly and it can be hard to keep up with the ever increasing volume of information that is out there, especially when you're energy poor and brain fog rules the day. But all we can do is be open to that change and to listening. I try to employ the idea that all beliefs should be challenged. If they are reasonable they'll survive the process, no doubt with some tweaking, but if they are missing the mark they should evolve as I process the world around me. Of course I'll cock it up at times, we all do. But that is part of that process. :)

  3. Love love love love love love love love love love love love love (this post and the last one)


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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