Accessible Workplace Attitudes

This is a continuation of a previous posts about autism, accessibility and employability.

Accessibility in a workplace isn’t just the physical infrastructure.

It’s an attitude.

For Autistic people we will push on trying to fit with your inaccessible attitudes. Often to our breaking points.

In recent years I’ve learned to walk away from inaccessible workplaces, but it’s always a difficult and physically and emotionally expensive exercise. And honestly, this is 2019, not 1919 and ableist attitudes belong in the past.

In my case I will ask lots of questions and require conversations about your priorities. I am not asking for much – just for you to be clear about your expectations.

It’s strange that workplaces often complain about people not asking questions. But when Autistic people ask questions for clarity – suddenly it’s our disability.

In every job I’ve had where people have invested a morning 15 minute conversation with me for the first two to three weeks (it’s not more than that usually), has seen me produce quality (and quantity) work beyond expectations.

In fact, my last few jobs have harnessed my ability to spot where systems need to be clearer as a skill. I’m proud to say I’ve been part of some pretty cool process improvement initiatives – where my ability to help find clarity within a team is appreciated. Other workplaces have got offended by me saying “there’s no workflow clarity” and behaved like spoiled toddlers (and these are the ones I run from now).

Neurotypical communication is all about hints and perceived politeness. Asking questions is our way of understanding these unspoken cues.

So don’t punish anyone (Autistic or not) for asking questions because you can’t be bothered doing something that everyone (Autistic or not) needs – providing job role clarity and clear work protocols and processes.

When we spectrum folk ask you to be direct, don’t be cruel. We can tell the difference despite whatever myth you have bought into about our “emotions”.

Another thing I’ve experienced with inaccessible attitudes: the false equivalence defensiveness.

This is where you say “but I’m the parent/partner/friend of a disabled/autistic person”.

We are not all the same – you are not an expert in each and every one of us, because you know or care for one of us. You are not more of an expert in our condition than we are.

If we need a variation to distribution of tasks, it’s not because we are difficult. It’s because we know enough about ourselves to know what works.

Some of us have been “able” to work in fields that are difficult just like anyone else. Some won’t be in that category and that doesn’t mean they are less either. The reason high/functioning labels have been tossed in the bin is simply because expectations are either too high or too low – and ability and impairment are not binaries.

Asking for a desk near a window or away from flickering lights or fluro tube lighting is no big deal.

And if I hear the “we can’t change everything for one person” crap one more time – I’ll vomit. The fact is the most productive workplaces are flexible ones where people are treated as individuals and not drones. You want slaves? Go back in time and become a Roman overlord!

In the case of the inaccessible workplace – we are not an accessibility problem, you’re attitude to us is.

I have had a career where people appreciate my skills and just accomodate my “inoffensive quirkiness”. Cause honestly, in workplaces not dominated by adults behaving like toddlers, that is accessibility.

I think I’ll end with following three thoughts:

  • The need for accessibility is not a choice – we don’t get up in the morning just to frustrated and annoy you by being different to you. But being an asshole about accessibility is a choice.
  • Discrimination is the choice to be an asshole about accessibility.

Don’t be an accessibility asshole.

Accessibility is not expensive, it’s priceless.

So I am really fortunate at the moment.  I have a workplace where you can actually talk accessibility and they make an effort.  This is totz awesome.

They recognise the value like they recognise any other workplace well being issue.  Which is marvellous.

Lack of workplace accessibility is not a neutral act. It says loud and clear that people with disabilities are not welcome. It is an act of ableism.

Some previous workplaces were filled with comments like…

“Oh it’s too expensive for one person”

“We can’t tailor to everyone’s needs”

In the second example you come to learn that everyone is not everyone, it’s just you – the disabled (every)one.

In the past I’ve had to take time off, lose all the fun things in my life to deal with lack of accessibility issues.  My disabilities have relatively easier fixes than some (lighting, sound, access to quiet, room to stim),  but they can be expensive too. But like most people with disabilities I’ve had to pay a greater price so to speak, in loss of independence and constant discrimination.

It can be much worse for wheelchair users and people who use mobility aids and I am aware I am privileged in comparison.  So I am using this privilege to advocate for accessibility for all, not just me.

Other people I know constantly pay the price in not being able to access a workplace at all, even if they have the skill to work in it.

A study in the UK found that people with disabilities spend more money on general living costs than most people just to do things other people take for granted. Key findings were:

  • On average disabled people face extra costs of £583 a month
  • On average, a disabled person’s extra costs are equivalent to almost half of their income (not including housing costs)
  • 1 in 5 disabled people face extra costs of more than £1,000 a month
  • Disabled people’s money doesn’t tend to go as far. On average, £100 for a non-disabled person is equivalent to just £68 for a disabled person.

Emerging research shows this is a global phenomenon and it certainly reflections my experience.  More than 60% of my wage goes in necessary measures to keep myself working.

I can’t just live anywhere in a house cause I like it – there are certain features I need to live and stay well enough to work.

The ultimate price many disabled people face is homelessness and/or welfare dependence and you know how the bean counters of the world view the costs of welfare and it’s not positive (which is completely unfair of course).

The people complaining about the cost of disability pensions are usually the same people whining about the cost of accessibility modifications.  Yet they fail to see that this economic rationalism is ableist structural inequality at it’s best.

So…the consequences are…

Can’t access an accessible workplace, can’t work, end up on a pension. The pension is inadequate and can result in worsening poverty, homelessness and poorer health outcomes.

Can work but workplace is inaccessible and leads to long periods off work, lower productivity and periods of poverty and homelessness while you recover.

Damned if you do, damned if you don’t.

Yet I got to tell you that stairs suck for all of us at some point in our life (even for the ableds).  With an aging workforce and later retirement ages, stairs are a false economy. Inaccessibility is a false economy.

The fact is our environments are often disabled, not us.

The fact is accessible environments are often better for everyone.

The costs of making a space accessible are short term costs, the costs of inaccessibility are permanent and a burden on everyone – the person with the disability is not the burden.

The fact is that accessibility and working with someone to achieve it, is not expensive, it is priceless.

Accessibility benefits everyone (and I mean everyone).

*I have used “people with disabilities” and “disabled people” interchangeably to reflect different ways that people in the community prefer to be referred to. 

Unlearning with Pepper

So after three years of thinking about this I’ve decided to take advice about a service dog.  This past two years has been an exercise in unlearning.  Unlearning ableism.

I looked at various options and decided to follow the MindDog process; whereby you can select your own dog and work with the trainer to train that dog to be accredited.

I sort out the services of Laura Mundy who is an accredited MindDog trainer and psychologist.  We discussed what personality dog I would need to seek based on what I wanted to get from the relationship with the dog.

During my teen years I had a horse who I credit with saving my life.  Another myth about Autistic people is that we don’t have empathy.  I have trouble reading other people’s hints, sarcasm and passive aggression as I have low cognitive empathy, but I have enormous amounts of effective empathy.  I am affected by high emotion settings but struggle to process why.

My response as a child was to freeze, as an adult it is a meltdown (which was often confused with a panic attack). My horse used to calmly help me get rid of that excess emotion when we went riding alone. I loved just being with her, away from people, sitting in a quiet spot in the bush.

Laura recommended a greyhound because of this history and gave me a list of traits to look for in a rescue greyhound.  An important part of this process is the right bond between dog and human.  The next step is to start the MindDog accreditation process along with training and assessment from Laura.

The idea was to find a dog that will encourage me to find the least crowded ways of walking by pausing and making me slow down, slowing my responses to my anxiety. A chilled out dog, but a dog that can also understand that my anxiety comes from sensory overload and how to help me deal with that. Slow down Jacci, walk another way. When I am anxious generally, the dog will take my focus away from the anxiety inside of me.

img_2880.jpgI was approved at two services and then went to look at Pepper on Sunday the 24th February 2019 (I won’t forget this date) at the Baxter office of Gap Greyhound Adoption Program Victoria.

I was super anxious as she approached me, but was holding back tears and pretending to be okay.  She just knew.

She walked up to me and pushed her head into my legs and leaned against me really affectionately.

I wanted to cry, but the urge to cry fell away and I felt safer.

It was amazing and so reminded me of my horse that used to put her forehead on my chest and gently press.  Note: yes, she is thin.  There are efforts underway to improve her weight, she was a racing breeder and she has gained a bit in the last two weeks already. 

I picked her up and brought her home early Saturday the 2nd of March and in just 24 hours I already feel different and we are getting along amazingly well.  Like I can do this.  Like I am not less for being who I am.

She seems to know when to leave me alone and when to intervene.  I often feel dreadful anxiety in the mornings just getting out of bed.  This morning she refused to budge until I had processed that with doggo cuddles.  Only when I felt better did she go “come on let’s go”. img_2916

With Pepper I am about to shed years of learned shame.  But this shame doesn’t come from nowhere.  It comes from my early life and how the world (and the people around me) spoke of anyone with a disability.

So many times I’ve resisted so many therapies and simple steps I could take to make my life better. I hid and suppressed things that I now know are part of me and not things to be ashamed of. Because deep down, despite my protestations otherwise, I thought I was “broken” and was trying to make myself like everyone else.

I didn’t want to be pitied and cooed over like my Dad was.  I couldn’t imagine anything worse, but that was happened to my father with his chronic illness.

Then there was the martyrdom and burden stories associated with his care and the narratives about how stoic and brave he was.  To me he was just Dad and I knew he felt like a burden enough without these dramatic stories circulating around him.  He would hide symptoms of his illness to prevent the drama it would create around him, something that didn’t help with the chronic heart condition he had.

To other members of the family telling these stories appeared to give them hero status in a 1970’s and 80’s world were carers “had to put up with a lot”.  The culture of ableism was high during this period, without any real discussion about what the person on the other end of that caring felt or thought or needed.

I know I did not want to be the centre of attention for being broken.  That was the family story.  So I pushed on through and at times, and sometimes did break myself.

I am no longer ashamed of my synaesthesia and the anxiety it can cause me.  I have a clearer picture of how I internalised that ableism in the past and how I can change it now.

Conversations with optometrists are coming back to me with new relevance.  They would do extra periphery vision testing because I would describe what I experience.  How artificial lights exhaust me, or how I experience the world like I am under a spotlight. How nighttime street lighting makes me feel as though I am in a tunnel.

Early on in my life wearing glasses I stopped telling the truth about the swirling but almost translucent colours (it varies in intensity) that permeate my vision moving in time to the sounds around me.

When a psychologist suggested wearing sunglasses to me and that I wear them anytime I am not at a computer, I balked.  Now I do, and the improvement in my quality of life is rapidly improving, because I am not so exhausted mentally.

I now know that when I talk about the tastes in my mouth when I touch things, I don’t need another test for diabetes.  I know understand how I stim (see this great video on this) and what it means for me, but that’s another whole blog entry.  Check out Agony Auties great video on stimming and quiet hands and shutdown.  My experience is very similar to hers.

Must be time for a walk to the beach with Pepper.  Yeah, that sounds like a plan.

The Long Haul Imposter and Ageist Wank

Ageism and sexism have always been dance partners. Like peas in a pod. Like flies to shit piles.

I felt invisible until I was 45. So whilst I’ve packed as much as I can into my life, I’ve mainly kept my head down and tried to stay invisible.

Then I started doing comedy. Now as I enter my 49th year I am more visible than ever and here for the long haul.

For the first time in my life I feel my story is important. That all our stories are important. If we are going to get truly intersectional, now is the time.

I wanted to write about the feminist cause and how long it takes to get things done and how we will always need feminism. But then I thought that was best told through my story.

Largely because, now, more than ever I am beginning to see the signs of a new “ism” for me.

I know ableism. This is a reality of being on the spectrum and having some acquired injuries as well.
I know sexism. All too well and I tell these stories on stage as a comedian to remind the world we still need feminism. I have experienced the “tone policing of the patriarchy” where I wasn’t allowed to like myself, let alone be proud of my achievements. Men and women in my circle of influence ran me down for any shred of pride. Until I left that circle of influence.

But this fucking ageism that says I am not allowed to be proud of where I’ve come to because I am now less relevant or need be humble? WTF. This is usually spoken before they know my history, based on zero knowledge of that story. However I’m “older” and these generalisations are usually accompanied by a range of comments about age.

Sometimes the use of humility, “stay humble”, is just another way the patriarchy tones polices women. I’ve done my fair share of self-depreciation sheathed in a supposed “humility”. No more.

I’m not promoting myself as dull for no-one, not even for the Dalai Lama.

As a side note, I’ve been retreating and studying eastern thought on subjects such as humility for a decade now and I’ve met a few significant Lamas. None quite the Rockstar of his holiness, but the contradiction of people commodifying Buddhism to the west so it can be culturally appropriated is not lost on me. I’ll just use mindfulness and meditation as techniques in and of themselves and stop trying to twist humility to serve the patriarchy.

I find it fascinating when women use humility in a way that was once used like “sweet, nice and passive” was once heavily used for oppressing women. Internalised misogyny is something we all work to recognise and manage.

Now I am proud of my achievements, proud of my place on the autism spectrum, proud of my association with feminist action (even before I called it that) – and that new ism of ageism is interfering with my pride.

I am not having any of this ageism wank masquerading as “relevance”. It can fuck off. I’m going to tell my story, whether people think it is relevant or not. Because there will be someone who benefits, someone who walks away from it feeling better or more empowered.  Even one is enough.

I currently work with a group of 40 plus of the cleverest women and men I have ever worked with. I’m not naming that organisation because I like to keep my public face and private face separate. But let me just say I regularly don’t feel bright or clever enough to work with them at all. I feel like an imposter sometimes.

Today my Chief Executive Officer reminded me it was time to let that go and by golly gee gosh (irony alert: isn’t that just such sweet older lady talk, I’m just saying it like some expect me to!) – she is right.  I am one of this crew of clever people. But this story isn’t just about me or the cohort I work with. It’s about how all women survive. It’s another story of survival and resilience. We really do need to honour ALL our stories.

This ageism is interesting, especially when a woman nearing 50 is assumed to have had a “traditionally female life”. Or that her history is not as relevant as younger contemporaries (whether traditional or otherwise). This suggests that we only assign value to whatever story is commodified by popular culture. Still, popular culture tends to, unfortunately, reinforce sexist norms about a woman’s beauty being most important. She is then, either a relic of the past, or, less relevant as she ages. If she dares modify her appearance she is then told to act her age.

Damned if you age gracefully, damned if you age disgracefully, just damned if you age. So age! Age however you fucking want and enjoy every freaking bit of it.

I’m here for the long haul as a feminist as old and irrelevant as some might assign me. As I always have been a feminist, unknowingly for a period, but nonetheless worthy of the label.

So, it matters not what anyone else thinks really. Besides, if I can wear a large vulva costume on stage and sing rewritten show tunes about reproductive rights – I clearly don’t care if certain quarters don’t like me. My audiences have been happy and the audience does not lie.

Desperately staying relevant is the new corset. The foot in our back is the patriarchy.

I was originally an accidental feminist who was most influenced by a father who didn’t believe in traditional notions of gender. I now know that as an AS woman I am less likely to be drawn to traditional notions of gender binaries, so that makes sense. I never understood “girl stuff” vs. “boy stuff”. If I wanted to do something, I did it, aided and abetted by a father who was 20 years older than my peers’ fathers. It wasn’t until I was studying at 28 I discovered the world of feminist literature and then I realised I was quite the feminist. I have worn the label with pride ever since.

I joined the military as a teen because I hated school and dropped out in year 11 and I decided to follow the rather dreadful family tradition of service. I started out a clerk supply in the Royal Australian Air Force, even though I had applied for technical positions. I had done all my trade related subjects at high school, but I was told I did not have the “aptitude”.

A year in to my service, my Commanding Officer at 486 squadron Richmond noticed my tech ability and let me become what he called a “pseudo-techo”. I was trained to do duty crew on the flight line – marshalling, refuelling, towing and doing general checks of Hercules C130 aircraft.  When the bases education officer revisited my recruitment tests, I most certainly did have the right aptitudes and there were tech places when I signed up.  So some sexist creep decided they wanted to limit the numbers.  This is a story I have heard from quite a few women in the forces from the 1980’s and 90’s.

With my CO’s support I quickly applied to become an Instrument Fitter (known as a re-muster when you are already in the services). Off I went to trade training and then went onto to be one of the first female Avionics tech to graduate (this was after becoming an Instrument fitter first).

I found myself part of a total quality team leaders’ group in the Royal Australian Air Force that convinced command to bring in paper recycling. It’s a funny story – I’ll tell it one day. So, yeah, green sensibilities are not new.  Sorry not sorry.

I also need to say that the two women in a unit of 300 had to ask for a toilet to be allocated to us. Then we had to share it with senior officers who went to extreme lengths to keep it to themselves (a story for another day). We were required to walk 500m, only to be abused for taking too long to pee. Yeah, you read that right. This was 1992, not 1942.

When I left the RAAF, I went on to train as a Scuba Dive Master (and there were very few females in the industry).

Unfortunately, I did a round with “the bends”. Surviving two forms, Neurological and Musculoskeletal Decompression Illness after a dive went wrong and I rescued two students in bad conditions. I was treated in a hyperbaric chamber for a few days on 100% oxygen. This was after being flown at low altitude from Maroochydore to Townsville and after a long delay. Horrifying. Painful. Debilitating and almost fatal.

The next few years were more hell and I successfully sued my dive operator for damages, only to get a mere $25 000 after six years of lost income. At that time the insurance giant HIH was crashing and my dive operator was insured with a subsidiary. My payment was limited as part of the government bailout for HIH.

I went on Today Tonight at 23 to raise awareness of the need for a hyperbaric chamber in Brisbane. For bends patients, cancer patients and the gamut of other conditions that benefit from hyperbaric medicine. I got 1000 signatures with others working on a petition. Thank goodness for all those electronic petitions now, I don’t have to walk the streets and talk to people I am literally scared of.  Comedy audiences are further away…over there. Now there is a shiny Hyperbaric Medicine facility at Wesley Hospital.

I have a copy of a dreadful That’s Life magazine with a story about me in it that a friend returned to me last year, she had hung onto it for over 20 years. The reporting was all about my husband’s despair about my difficulties, not about my bravery or my recovery. But that was considered the only thing important in 1994.  It was also part of the narrative that covered up the abuse of women with disabilities or mental health issues.

At 27, a new mum and in the abusive marriage from hell, I decided to go to University, despite still recovering from an acquired brain injury. In addition, I was regularly being misdiagnosed with a range of mental health conditions at the urging of my abuser who actively informed the medical process and who worked hard to keep me sick. It’s hard to cope and heal from significant injuries while being tortured in other ways.

It’s so easy to blame domestic violence on a woman’s mental health, particularly when she is recovering from a serious injury/illness. Any retaliation can be deftly blamed on her and the society that has normalised that violence goes “but the wife was crazy”. It’s a view that, thankfully, today is beginning to fade as we strip back the myths of violence against women.

Interesting how I have thrived ever since I left that relationship. If that is not proof enough, I don’t know what is. I have never remarried and came out as bisexual in my early 40’s.

It turns out that in my mid 30’s I was properly diagnosed with Asperger’s but I rejected it until my 40’s. Every treatment (except for my forays into mindfulness and meditation) up until then was potentially damaging and I wasn’t sure I wanted another label. The earlier PTSD diagnosis was accurate, but that was made worse by abuse.

In the late 1990’s I worked hard to use the techniques a neuropsychologist taught me to rewire my brain. I learned to manage my mental health and what I know now were AS meltdowns, not psychosis. I can now de-escalate them by working with my sensory differences (hypersensitivities to noise, sound and my vision) instead of working against them.

At 34, I graduated from the University of Queensland with Honours in Anthropology (socio-linguistics). I left my husband and went to become a sacred sites anthropologist in Alice Springs.

I lived in Alice Springs for two periods of 9 years and 2 years. I did interesting social justice related work. Drove 26 000 km off road and recorded song and story with local Aboriginal people. Worked with violent men in maximum security educating about family violence. Helped build Indigenous road crews along the Tanami Road. Worked as a homelessness advocate. Worked for Alice Springs Women’s Shelter and for Gap Youth Centre in differing capacities.

In between stints in Alice Springs I did similar work and a bit of lecturing in critical literacy in Cairns in Far North Queensland. I then did 6 months in China teaching English part time while I finished writing my historical fiction book (which is currently with last edits with a publisher – hopefully to go to print in the next year all going well).

Then did a year in Darwin in 2015 (and then back to Alice Springs in 2016). During that time I doing stand up comedy and it has morphed into women’s rights issues based comedy and my solo show about growing up different.

In July I moved to Melbourne. I experienced a low-level sexual assault at work in February in Alice Springs. A random off the street tried to force his way in a building while groping at my breasts. That was it. I’d had enough of frontline work. I struggled with it and got lots of counselling. Had some months off and had to live off the good will of friends in Melbourne for accommodation during that period. It was extremely difficult, but I am glad I decided to take a leap of faith and come home to Melbourne (I was born here, but have not lived here since 1974).

So the sexists, the ableists and the ageists can all kiss my broad, middle aged, cottage cheese, faded tattooed ass.

I’m here. To stay. See you at Melbourne International Comedy Festival. The show’s called Mad Pride. It’s the 4 – 5th April (I’m the 5th) at 7 pm. Firefly Room – Newmarket Hotel. Inkerman St. St Kilda.

Book at http://www.comedyfestival.com.au