Living with an Invisible Disability 101: Microaggressions

A headline from the New York Post (reprinted in Australia by news.com.au), January 5, 2017:
‘Disabled woman refused help by airline staff for not looking sick.

A WOMAN with a chronic illness was reduced to tears after being refused help by airline staff because she “doesn’t look ill enough” to be disabled.’
‘Nathalie Allport-Grantham, 23, booked special assistance on her flight to Nice out of Stansted Airport with Ryanair on New Year’s Eve because of her two chronic illnesses, the New York Post reports.
But when she showed up at the gate looking for help, she was told she wouldn’t get any assistance during boarding and she was “wasting [the airport’s] time.”
“She basically looked at me and said, ‘I’m here to help disabled people, I’m not here to help you,” the scorned woman told the BBC.’
This form of discrimination is so familiar to me that I shared and commented about it on Facebook, as follows:
“I have lost count of the number of times ignorant people have accused me of being ‘lazy’, a ‘malingerer who just doesn’t want to work’, or committing ‘welfare fraud’ just because my disability is not readily visible. Not all disabled people use wheelchairs.
In actual fact, I cannot walk or stand for long, am in chronic pain, and take numerous medications on a daily basis to keep my autoimmune disease – which I have battled for 37 years – under control. I have permanent deformities in my hands and feet and have difficulty with many daily tasks most people take for granted. This lack of understanding from my community is deeply hurtful and isolating, and over the years I have lost numerous ‘friends’ because they assume they know more about my health than my doctors.
The current climate of poor bashing by the Australian government is not helping one little bit.
In my dreams, I hike, run on the beach, work, and travel. In real life, I can do none of these things, beyond a bit of home-based freelancing.
So PLEASE think before you judge, and think even harder before you speak.
I often say to my partner, ‘If I was in a wheelchair or used a walker and X spoke to me like that, they’d be ashamed of themselves. But, no, hang on, no they wouldn’t. They’d patronise me with fake niceness so everyone could see how kind they are to the poor cripple.’

The way we treat the disabled is a national disgrace.”

The activist and ‘appearance advocate’, Carly Findlay (carlyfindlay.com.au),calls these almost daily occurrences in the lives of people with disability, ‘microaggressions’. To those not experiencing them, the uncaring remarks, ignorant judgements, or blatant stares at those who are different may seem like small potatoes. But when experienced frequently, these ‘microaggressions’ can feel like an unbearable burden, making lives that are already difficult even harder.

 

I spent many years ‘passing for normal’, because, unlike those with more visible differences, I can. I have always put emphasis on what I can do, rather than what I can’t. But, increasingly, I have become committed to proudly asserting my membership of the ‘Crip Army’, viewing my disabled identity as an essential part of my self, and embracing the disability community as ‘my people’. This is as it should be, as I have so frequently experienced discrimination, ableism, and infantilisation as I move through the world. I often feel people like me are afforded only one or the other of two possible identities – as a source of ‘inspiration porn’ when I achieve things in the world, or as an ‘object of pity’ when I cannot.

 

Below I have related just a handful of examples, from just one small area of my life, my involvement in the music world. Obviously, if one extrapolates these experiences over a lifetime and over the many roles a person plays in life, it becomes clear how ‘macro’ the ‘microaggressions’ can become in the mind of the target. You might call this ‘whingeing’ or ‘complaining’ (which some seem to think of as a capital offence), but I prefer to call it ‘educating the ignorant’, specifically on how NOT to treat people with disabilities. Or ANY people, for that matter.

 

(Below: SWAMPFISH, Maidenwell Folk Gathering, 2017)

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ONE
I play music and sing, and have done so professionally for the past decade. As a singer, it’s been freeing and a great source of joy to be able to accompany myself on the autoharp, strumming my own chords. People sometimes say to me, ‘That’s not a real instrument, all you do is press the buttons’. But when you have deformed hands like mine, to be able to play any instrument at all feels like a great achievement. (See also my Page, ‘In Defense of the Autoharp’ for more on this.)

 

Where I live, there is little opportunity to play. Venues here specialise in acts such as AC/DC cover bands or ‘All-Male Revues’, not acoustic folk music. So if we want to perform, my partner and I usually take our duo into Brisbane, a 45 minute drive away, to attend folk clubs and gatherings. A year ago we ventured south, to the Gold Coast, after some acquaintances had talked up a music club, keen for new members, to us. We drove the 70 minutes to the venue, paid the door charge and membership fee, and played a two song walk-up spot. To secure a place on the blackboard, we were required to get there at midday, for showtime at 2.00 PM, with the feature act playing at 4.00. The whole thing wrapped up at 5.00, and we made it home by 6.30. Thats a total of 7 1/2 hours to play two songs. For anyone, this is a very long day. Throw in the oppressive Queensland summertime humidity and the vagaries of my disability and such a day is a big ask.
So we did not return for some time. This club has a yearly festival, held over an entire weekend, and supported by the local council and various sponsors. A number of our friends had paid performances over the weekend on the main stage. We were keen to go along and support both them and the club, so planned to attend and play a set on the open stage.
A few weeks before the festival, we had a small gathering at our home, when we invited the aforementioned acquaintances , who were also committee members, and I took the opportunity to explain to them about my illness and its impacts. (Before starting this blog, I did not generally discuss my health issues with people I don’t know well, but felt it was imperative that they understood who they were dealing with.). In the week leading up to the festival, I contacted one of them again to say we would be coming on the Sunday to play a set, assuming they would let the stage manager know. And on the Saturday, I messaged again to reconfirm our intention to come and perform.
(I should say here that the leadup to a performance is different for me than most. Where an able-bodied person might have one long 4-5 hour rehearsal, I have to rehearse an hour each day in the week prior to the gig in order to be stage ready. This is because my hands become painful with use, so I have to pace myself. It’s also relevant to mention that I have rarely played a gig where I haven’t been dosed up on opiates to control my pain so I can get through the gig, and I usually require 1-2 days recovery afterwards, depending on the length of the set.)
So, on the Sunday, the second day of the festival, we dressed in our finest gear, including matching Stetson hats, and drove to the coast, thinking how nice it would be to contribute to the weekend’s success by coming in as fresh talent when others were tired, and hoping to form relationships with other members and perhaps become a more active part of the club.
We arrived at 10 AM, and immediately ran into the woman I had spoken with, who, in giggly fashion, welcomed us and informed us that she was ‘Toilet Monitor’ for the day, something she appeared to find hilariously funny. The day was already extremely hot, and I was glad we had thought to bring supplies of frozen water as it promised to only get hotter. We checked out the Open Stage tent, discovered workshops were being held there until midday, and wrote our duo’s name on the blackboard (which, for some reason, although set up, was not being used) in the 4.00 PM slot. No other names were on the board. We then settled in to watch a couple of hour-long performances on another stage while we waited to play our prepared 20 minute set.
At 1.00 PM, we made our way over to the Open Stage, where a solo performer was playing a few tunes, then sat down to wait our turn. But nothing further happened. There were thirty to forty people in the chairs, many, I assume, waiting to play, but the person I assumed was Stage Manager was busying himself chatting to friends in front of the stage for quite some time. We waited, and sweated, and waited some more. By 2.00 PM, people were getting restless. When I noticed a break in the conversation, I called out, ‘Excuse me, but who is Stage Manager?’ And he replied, ‘I am’. I said, ‘Can we play now?’ He said, ‘Write your name on the blackboard’. I replied, ‘We’ve done that, but that’s two hours away, it’s hot and nothing seems to be happening, can we play now?’
The Stage Manager walked over to where I was sitting, put his hand on my shoulder, looked down at me, and said, patronisingly, ‘Settle, Petal, you’ll play when I say so!’
Astonished, I said, ‘Excuse me?’ Then poked my finger in his paunchy belly and said, ‘Listen, Sunshine, Sweetie, Darling … I am NOT your ‘Petal’!’
He harrumphed, and walked off. And I looked at my partner and said, ‘Fuck this, let’s go home’. Which we did. I felt disappointed and demoralised but, even more than that, incredulous that a stranger would address a middle-aged woman he does not know in such a fashion in 2017.
The next day, I messaged the ‘Toilet monitor’ and related what had happened and how upsetting it was. I asked her to relay my comments to the Committee and suggested that Stage Management is an art that requires better people skills than what we had witnessed, and that central to the role is the ability to make people feel welcome and comfortable, and not like supplicants at the altar of their fabulousness. I even offered to – with my partner – take on the role next time, providing our own PA system and considerable expertise in running venues such as this, as it was clear the current Stage Manager was more interested in lording it over others than doing a good job. To which she replied, dismissively, ‘Oh, I knew you wouldn’t get on’.
‘What do you mean?’ I wrote back. ‘We didn’t even have any conversation beyond what I’ve told you. What do you mean?’
She wrote, ‘Oh, he can be a bit of a sexist.’
Incredulous, I responded, ‘Are you suggesting I have ‘resting Bitch Face’ or something? Is there something intrinsically unappealing about me that makes random men disrespect me? Are you suggesting this happened because of something I did?’

 

Needless to say, this never went to Committee; instead she treated what I had told her as a simple personality clash. She phoned the Stage Manager and relayed back that he had apologised.
‘I didn’t want an apology,’ I answered. ‘I wanted to play. I am a financial member of this club and I wanted to play. And I wanted my feedback taken seriously and relayed to the Committee.’
Needless to say, we haven’t returned, or renewed our membership. It was all just too hard. And I am no longer in contact with ‘Toilet monitor’, she who doesn’t believe ‘feminism’ is necessary, and who doesn’t see anything wrong with a disabled person waiting four hours in blistering heat, in an attempt to positively contribute, being treated like this.

 

TWO
Some years ago, I sang and played bush bass in a trio, and we gigged for several years around southeast Queensland. Now, I am not above constructive criticism, but I am an experienced performer of over two decades in other, non-musical genres, (primarily performance poetry but also some singing), and I have been singing my whole life, including seven years in school choirs, culminating in an 18 part harmony madrigal group in my HSC year.

 

Our soloist, who had been informed about my physical limitations in some detail, had a friend, some twenty years my junior, who is an accomplished singer and performer in the musical theatre genre, but also suffers from a mental illness. She is a quite likeable, but highly erratic individual (for example, she is given to taking her top off in social situations so the boys can ogle her breasts, and consumes copious amounts of drugs and alcohol, including pharmaceutical grade ‘speed’ she gets from her doctor. I suspect our soloist, being partial to such drugs himself, hung out with her for this reason.)

 

For three long years, this young woman attended almost every rehearsal we had, and relentlessly criticised my singing, assessed my clothing, commented on the size of my breasts, and was generally disruptive. I put up with it because we had gigs to play, (booked always by myself or my partner), I needed the money, and I didn’t want to create drama. Besides, I had worked hard to learn the repertoire and I really wanted to get out there and play. She would often come to our gigs, and could be relied upon to be sitting in the front row, her back to the stage and talking loudly, whenever I had a lead vocal to deliver. It was infuriating, but I was determined not to stoop to her level by reacting.

 

On top of all this, according to our soloist, I was not ‘really a musician’, and I generally felt ignored and quite alone onstage. In the beginning he flirted outrageously with me and, when it became clear I wasn’t interested, then tried to buddy up with my partner, creating a ‘boy’s club’ atmosphere. It was very stressful, and hurtful, and I was stunned by the blatant cruelty. Eventually my partner and I decided to start booking gigs as a duo. This was the reason I started playing autoharp, so I could take over the rhythm guitar parts and my partner could play lead guitar. I had already worked too hard at this to just walk away. Learning to play 4 sets of material (around 40-50 songs) on a new instrument was a steep learning curve. But, as it turned out, we did quite well as a duo, and released a crowdfunded CD in 2014.

 

(Below: SWAMPFISH at The BUG – Brisbane Unplugged Gig – New Farm, March 2017)

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THREE
There is a small annual folk festival in our region, and I’ve lost count of the number of musicians I respect that have frequently urged us to apply to perform there, insisting we are (a) good enough and (b) as locals, should be part of it. Further, the organisers of the Sunday Gospel Sessions twice asked us to come and participate as we have repertoire they would have liked to include in the session. As much as we would like, we had been unable to attend this festival as audience and form personal relationships with organisers in the hope of a future booking because, relying, as we do, on our Disability and Carer’s Pensions, we simply cannot afford to drop $300 plus (for fuel, entry and food and drinks) in one weekend. There is an opportunity to volunteer but, given my standing and walking difficulties, this is not really an option.

 

I have applied for a gig for us at this festival, which purports to present ‘local’ acts as well as visitors, for the past four years. Even with substantial local exposure, biographical writeups of both of us in the local music press, and a new CD that received decent radio airplay via AMRAP and AIRIT and two favourable reviews, we were knocked back every time. This festival, like so many others, claims to be ‘inclusive’. But from the standpoint or disabled an/or low income musicians, this is clearly not the case. I will not bother applying again. There’s only so much rejection one can take.

There is nothing ‘inclusive’ about this event, and having a few highly-visible wheelchair users in the audience front row as a feel-good exercise for organisers is not enough to mitigate these obvious barriers to participation.

There are many more lived examples of structural and organisational disadvantage I could cite in my musical journey, but I’m sure by now the reader gets my point.

 

In 2017 we decided to cease playing professionally. The toll on my hands of staying stage-ready, while being continually rejected, has become too much, and I want to use my limited hand stamina to do other things with my time, such as writing and gardening. We have ceased to pay our yearly performer’s insurance, stopped sending out PR packages, and will now only play at small folk gatherings, parties, through personal invitation, and at walkup gigs where we feel welcomed. We have proved our professionalism again and again. And now we are done.

 

THIS is what discrimination against the disabled looks like.

 

I will no longer bang on firmly closed doors begging for entry.
If I cannot be welcomed with respect, and as part of my own musical community, then I will not bother at all.
It is all just too depressing and demoralising.
So, if you want to hear me sing and play, you’ll have to come to my house.
(Oh, and bring some Gin and Tonic!)

 

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