Last week I was involved in the Disability Pride is Back! mural in Melbourne. This was a Melbourne Fringe Festival event. Over 50 people with disabilities contributed and pasted-up artwork (drawings, prints, poetry, images) to create a huge street-mural celebrating disability pride and culture.
I’m sure that my involvement in this event has left some of my friends confused. I can imagine that “what you disabled? But you look so well,” has been a common thought closely followed by “why is being disabled something to celebrate?” Some people have asked me “did you draw that?” Yes, I’m disabled! Yes, I’m proud of it! Yes, I drew that! Let me explain.
Living in Disability-Denial
At 2.5 years post-diagnosis of Addison’s Disease, I was dismissed from a part-time job because my employer refused to offer the accommodations that I required to continue in the role. I then found it challenging to find any paid work which was small enough for my capacity, and flexible enough to meet the demands of my fluctuating health and rigid medical commitments.
Friends who work in the helping sector started suggesting that I should be getting the Disability Support Pension. [My investigations found that in order to obtain this, my symptoms needed to suddenly fall into neat diagnostic categories and become stable and predictable, plus my husband needed to find a lower paying job or ideally, stop working]. It’s fair to say that the mention of the word disability initially threw me. You see, the idea that I had a disability was completely new to me.
Then, in 2017 my friend Lara, an artist and disability activist invited me to participate in a new event she was organising called the Disability Pride Mural. Her invitation caused me to reflect carefully on whether I had a disability [Lara is a clever girl].
Unknowingly, I’d lived in disability-denial for many years, instead identifying as being “sick”. This had lead to frustration that my body wasn’t cooperating with the standard treatment for my disease – “you should be better!” the doctors repeatedly (and unhelpfully) told me. None of my doctors or allied healthcare professionals have ever mentioned the D word.
By not identifying as having a disability, I had little means to ask for support and accommodations. How do you access disabled parking permits, disabled toilets, the disability pension, disability services and disability communities if you don’t have a disability?
I realised that the problem was that my definition of disability did not include people with chronic illnesses. Why not?
From a young age we are told the “Sick Story”; that when you fall sick you go to the doctor, he (usually a “he” in the story) gives you medicine, and you recover. Chronic illness defies the Sick Story because you don’t ever fully recover from sickness.
I suspect that I had been conned by the Sick Story into thinking that people with chronic illness eventually recovered and believed that people were not severely impaired by sickness – it’s just like having a flu for a while, yeah? I definitely know better now.
I researched what a disability actually was and discovered this:
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. – The World Health Organization
My impairment = A loss of anatomical function to my adrenal and thyroid glands.
My activity limitations = Pretty much everything when I’m having a symptom flare and cannot get out of bed. Even on my good days, I currently cannot do any high intensity tasks to full capacity.
My participation restrictions = I am unable to engage in high and/or prolonged levels of stress, activity or stimulation. I am unable to participate in paid employment, a “normal” social life, most exercise classes (perhaps the ones designed for the elderly), or travel wherever I want to overseas.
Coming out as Having a Disability
I then returned to the question of whether I have a disability – quite clearly, yes, I have a disability.
This is me and my friend Lara celebrating the artwork that I contributed to the first Disability Pride Mural in 2017 – my official coming out as having a disability. My drawing represented my acceptance that Addison’s Disease is for life, I need to take medication daily to stay alive and I’m at peace with that. It was designed to challenge the stigma of taking long-term medication.
Challenging Disability Shame
I am aware that most of our society believes that having a disability is the last thing that you’d choose to do [I say choose because my disability is mostly invisible and I’m choosing to make it visible by identifying as disabled].
We teach people that happiness is tied to health, wealth and relationships; that you can’t truly be happy until you have all of these things. Therefore we assume that people who are disabled must have joyless, meaningless lives and we pity them (see this wonderful video for more on these ideas from Claire Wineland).
I could live my life believing that it is lesser than that of able-bodied people. But I’ve held a longstanding belief that pain, suffering and loss (such as what I had experienced living with chronic illness) can be a gateway to finding happiness and meaning – a concept known as post-traumatic growth.
Being chronically ill has taught me how to slow down, do less, talk less and to appreciate more of the world around me. I have discovered a whole new range of slow-activities that I enjoy; drawing, reading graphic novels, practicing yin yoga, and playing card games.
Living with a life-threatening condition has taught me that life is changable and unpredictable. Therefore every moment is precious and needs to be spent wisely. My decision-making has become intentional; how do I want to spend these 2 hours of energy that I have today? What’s the one thing I’d absolutely love to do in the next week/month/6 months? I say “no” to activities that are unimportant or will cause me undue suffering.
Being disabled has involved a range of experiences (good, bad and ugly) that I wouldn’t otherwise have had. I’ve met a wonderful group of unique, creative, kick-arse disabled humans. I’ve been on unique adventures such as visiting the Tetley Tea hospital in India (they built it to care for their workers in the tea-fields). I’ve had many unpleasant experiences that provide empathy into the lives of others who are chronically ill and disabled, and insights into how to improve our healthcare system.
My life as a disabled person is definitely more painful, stressful and challenging than when I was well. However it’s also richer, slower and more mindful than before. I’m proud of this life I’ve built and who I have become as a person. Who’s to say that my life is worse than that of able-bodied people?
Embracing Disability Activism
In addition to celebrating rather than shaming my new life, I like that Disability Pride is connected to an activist movement with a long history particularly in the US. Disability Pride is a protest against the traditional Medical Model of Disability that pathologises and marginalises disabled people.
This is my diagram of the Medical Model of Disability which we pasted-up as part of the 2018 Disability Pride is Back mural. It was appropriately defaced by another disabled person. The Medical Model of Disability says that a person’s medical condition, impairment or difference needs to be fixed or covered up so that they can be more “normal” and fit in with everyone else.
Disability Pride is consistent with the Social Model of Disability (see my diagram above and this video by Australia’s first disabled senator, Jordan Steele-John). It argues that disabled people are more disabled by our ableist society (a society that is predominantly designed for and celebrates able-bodied people) than by their body.
Disability Pride frames disability as a natural part of human diversity that should be celebrated and included rather than excluded, hidden or shunned. Being disability proud is therefore an act of activism against disability stigma. It provides the impetus to speak up about inequalities and to request accommodations.
My Artwork for the Disability Pride is Back Mural
My artwork for the 2018 Disability Pride Mural was a colourful mandala depicting my daily self- and medical-care rituals – rituals that are woven into all aspects of my life. Society typically views my rituals as being ugly, lazy, weird or things not to focus on too much to prevent them from taking over my life. I feel pressured to hide my rituals from others so as not to stand-out or identify as being disabled.
My artwork challenges this disability stigma by presenting my rituals as being beautiful, bold and colourful. They are depicted in a mandala (an object of meditation in eastern religions) and I am pictured seated in a traditional Buddhist Prayer pose. These religious elements represent the gratitude, mindfulness and reverence with which I perform my life-sustaining and life-maximising tasks. I am seated on a lotus flower which symbolises how my experiences as a disabled person have helped me to grow as a person.
And that is how I came to be standing proudly underneath my artwork at the 2018 Disability Pride Mural in Melbourne. This is how I came to believe that I am disabled and my life is wonderfully colourful because of it.