Growing up Neurodivergent in Newy

So, Black Inc Books went and pathologised Autism and related conditions and tried to uphold the medical model and delegitimise self-diagnosis in a world where diagnosis costs thousands of dollars and the trauma of reliving your childhood to get a label you already identify with so you can access NDIS and DSP and other supports. But go off. Click through to Twitter if you want to know how well that went with the Actually Autistic Aussie community there. Apparently they’re owned by a Zionist anyway, so whatever.

I’ve had a huge week, two days at the Sydney World Pride Human rights conference and my Nanna’s funeral and just surviving in between. I’m tired, probably sick, but always up for a rant.

The conference was amazing, 1800 delegates from around the world coming together to reaffirm the fight for our human rights as LGBTQIA+ people and wondering beings. The first session started late, about 45 minutes, which had me cranky since I’d been up since 4.30am to get there. They also had lunch scheduled in for times like 1.45pm…. I know it’s only 15 minutes later, but I feel like lunch should never start later than 1.30pm, Preferably no later than 1,

There were cookies. Many cookies. I feel like I need to learn more about Intersex people and the issues that affect them, and also about how gender is described in Indigenous populations and I need to step back more as a cis white woman and stfu. We need to decolonise at every stage, We need to look at who is not in the room and see how we can bring them in. I was there on an “affordability” ticket that I had to apply to get based on being a concession card holder. It was still $120, so well out of reach for most people I know living on welfare in this country, I put it on Zippay, so it’ll be paid off at some point. There was a panel on economic inclusion which talked about offering training to people to start their own businesses, but it all came down to there needing to be capital, start up funding and grants and microloans. Queer people will continue to need to crowdfund to get their dreams.

There was a roundtable on Thursday about Autistic and Queer identities but I had to miss that for my Nanna’s funeral. It was probably for the best I didn’t travel to Sydney three days in a row, anyway. I got to nap on the trips down which was helpful. I wish the coffee stations were open before the first session! But I guess they want everyone to buy from their cafe. The funeral was fine. I got impatient with an old lady who was asking my father where some other relative was living and I’m lady talk to us at the wake, not right now right after the service. I may not get along great with my father but I’m protective of him. Rah. It’s like when my Aunt died and someone was going off on him on the phone about something and I made my mother take the phone and tell them to kindly leave him the fuck alone.

I look at my family I’ve come from and the one that’s developing. I have queer and neurdiverse niblings on my side and Bruce’s, who’ve come out into this world and what it offers and threatens. I’m here to help them how I can to protect them and celebrate them. I’m going to become a step-grandmother this year, which I’m aiming to embrace and celebrate.

I’ll leave you with two book recommendations of amazing neurodivergent women. First is Anna Spargo-Ryan’s A kind of magic and second Amy Thunig’s Tell Me Again. Two women of around my age growing up in Australia with brilliant minds but fighting their own and their family’s demons around mental health and addiction. So much from both books resonated with me. You never know what people are going through.

I’m two years sober from alcohol. And I’ve done two months straight daily Japanese practice. I like numbers.

How I spent my $20

oh, hai  there. I’m Fiona. You may now know me now as the woman on Q+A with $20 who looked pained at Jim Chalmer’s response to her question about how those on fixed incomes like the disability pension are supposed to make choices between food and medicine (seriously, I better pay that chemist bill as soon as I get this posted – my Webster paks are a lifesaver both literally and metaphorically)… Why are we the ones having to suffer now to keep inflation in check?

My questions and his non-answer:

So, it’s taken me a good couple of days to recover from the trip down to Sydney – got the shuttle bus the ABC organised from Broadmeadow station at 5pm with 20 others, we got there around 7:30, then went through screening, I got handed my question on a card and was told that I was the second question and that like I had spoken to the girl on the phone about, Stan would be asking me followups and she and her chatted about my situation and such a couple of times on the phone in the previous days.

It was a bumpy ride, but to my relief a fellow local Greens member and his mate were also on the bus, so I could chat to them and calm my nerves about the whole process. And we got a photo with our idols in the foyer.

Fiona and Wylie making peach signs with big ted, little ted, jemima and humpty at the abc ultimo studio

We went in around 8pm, I got a microphone attached to me. There was a warm up stand up comic. The questioners were all run through to make sure they got our names right etc, and I was SUPER excited to see that a teacher that I often had in primary school Mrs Turner was there!

I didn’t expect a real answer from Jim, just as I didn’t expect Labor to raise welfare since they walked back their promises and demands that they had in opposition in the lead up to the election they just won. Basically they promised us nothing and we should be grateful for that!

So, back to why you’re here? After my triumphant non-answer getting on Q+A i called home to Bruce to scream into the void and get his reaction and love. Which I got. And a request for burgers on the way home, to which I lol’d “Yeah I can spend my $20 on that!” he laughed and said, don’t worry about it  but then I wanted burgers, and given the rough trip back, chatting with the young liberals and eating lollies and pretzels at dinner, I totally needed those burgers by the time I was back in Tronno at 1am!

So, to all the Daily Mail commenters who commented on my food choices and my fatness, yeah, I had midnight Maccas with that $20 that PureProfile surveys had credited me during the trip down (another DM commenter had suggested them too, don’t worry, I’ve been doing them for 20 years). It was the best Big Mac I’d had in a long time, the chips were salty and fresh, like me, and I needed something in my belly because I needed to be up at 7am to get to my usual Friday appointments of pickup up FoodBank and Ozharvest to share with my sister (and much free bread because there was non in the budget for us) and then to my Antabuse rehab group where we discussed what we like about our sober selves. 20 months sober my friends!

Yeah, I’m fat. And yeah I could exercise more to lose weight, but I’m glad I’m not the bulimic, exercise obsessed skinny girl I once was, 2 hours at the gym a day, running 5kms to quiet her mine. My blood tests are always showing I’m in pretty good health considering, and while I’ve been on seroquel I’ve not been anywhere near skinny. I’m mentally pretty good at the moment, and working on my mental health and life goals, while being a good human being. Looking after myself and my family and friends and being sober and safe. Financially, I’m not making any headway, but I don’t have a credit card to go into debt on, and so long as I can pay my rent and smile, I’ll be okay. Also, so long as the politicians have a food allowance that is five times the daily JobSeeker payment, don’t police our food choices, mmkay?

So, it’s been a big few days. Glad to be home with my boys and love my family, friends and twitter crew to death. Sent Bruce off this morning to work in his little tinny, and I’ve been a good housewife, doing dishes and washing and earning my keep while rolling marbles on Twitch. I also played some Scotty Goes to Centrelink (The Albo Update) earlier, and will probably go another round soon!

The full episode can be seen on the ABC website or YouTube

Please, if you also feel that it’s ridiculous that in Australia people on welfare payments are deliberately kept below the poverty line, sign this petition to parliament to have the rate of all welfare payments raised to above the Henderson Poverty line which is currently $88 a day. The petition is an official parliamentary one so you’ll need to click the verification link in your email when it comes through to complete the process.

May be an image of text that says "signed the petition to #RaiseTheRate to #88aDay because... POOR PEOPLE DESERVE NICE THINGS UINCAPLOYEO AUWU NOINN NOINN Sign and share! auwu.org.au/petition"

Lake Macquarie Pride Fair and Break the Poverty Machine Rally Newcatle

SO, that was a HUGE weekend with a lot of planning and build up, lots of talking and posting and having my brain switched on, and now that I’m in recovery mode I’m going to look back at it! This is my boot after ditching the tables and gazebo at the scout hall from pride, but before the rally Monday. It’s chaos like my brain! I’ve now gotten to Wednesday and think I MAY have a virus, but it’s not certain, so I’m just drinking all the water and resting up. RATs are neg so far. I’m probably just peopled-out.

I did touch a lot of people as I was putting on soooo many temporary tattoos heh Only a couple of cleavage ones, unlike ten years ago when I was applying temporary tattoos for the Sex Party (now Reason) at Sexpo in Sydney!

A lovely evening, with perfect weather and a mix of market and community stalls, lotsa freebies and cool things, and a great vibe! Well done Newcastle Pride Inc! Thanks for bringing pride to Lake Mac!

Sunday was a rest day, and  then I picked up my Twitter friend Aeryn from the station who’d come up from Wollongong for the rally!

Here are some of the experiences of welfare shared by attendees at the Newcastle rally. You can click on the thumbnails to enlarge them.

Why is seeking welfare the same effort as a full time job and it's still not enough to get by #raisetherate

And then the tear-jerker from Andrew who I’d been chatting to outside Centrelink while he was waiting for a friend. He started off with the expected – red meat, social life, coffee, giving up tobacco being a near killer as it got more and more expensive, but then, the story of how he’s been saving for a headstone for his baby boy’s grave since he dies 8 years ago at two days old just hit me hard. I apologised for having to bring it up, but he reassured me it was okay and it was good to tell someone who cared. Every time he comes close there’s the unexpected expense like a huge bill or a fridge breaking down and he just hasn’t gotten there.

The speech from Catherine was powerful, with John Mackenzie also telling it like it is. Mum says we were on NBN news that night, but they haven’t posted that story on socials.

Aeryn and I went for a scenic drive, listening and watching the rally from Adelaide on Twitch and stopping for lunch at gorgeous Nobby’s, at Bruce’s insistence I treat us to lunch somewhere.

And here we are. Check out the #BTPM tag on twitter and other socials for posts from people on Centrelink around the country pleading for a better future this Antipoverty week. There’s way too much talk about what would be nice but nothing tangible being offered, as usual.

“Happy” World Mental Health Day

Woke up so anxious today and it rapidly build up. Seeing the Happy World Mental Health day platitudes on Facebook and Instagram, contrasting that with the reality facing my loved ones didn’t help at all. I mean this tweet for one:

The discussion on Twitter over the weekend with people with Ehlers-Danlos syndrome (EDS) being denied access to the NDIS because they haven’t access all of the supposed treatments out there that are neither listed nor readily available in either the public OR private systems 

It’s the same as trying to access the Disability Support Pension, you need to HAVE money in order to access the treatments and diagnosis that gets you onto the pension, plus you also need to prove you aren’t getting better any time soon.

 

Oh and we also realised that the Medicare rebated sessions for those that can afford the upfront cost for and get into see psychologists are going back down to ten sessions from the 20 they were at during Covid.

Where am I going with this?

There are SO many basics that need to come into place before people can even think about being mentally well. You have to be able to feed yourself, and not just a daily meal of out of date pasta,  you need fresh fruit and vegetables. You need stable accommodation. You need to be safe from violence. You need to be able to treat your PHYSICAL health needs. You need to be able to get into a GP, to be able to either find one that still bulk bills, or to be able to front up the $80+ for that appointment before the $39 rebate. And that’s never a one-off. And the specialists, waiting list and fees if you can even get into one. And meds, even on at healthcare card that’s $6.90 a pop, if it’s on the PBS, otherwise it’s also $80+ without any rebates.

If it feels like an impossible task some days, that’s because it may be.

We need the governments to act, to work together to provide public housing, to raise the rate of all welfare payments to above the poverty line, to allow access to the right payments like DSP, parenting payment, JobSeeker, without so-called mutual obligations that amount to harassment and bullying. That make people less likely to get a job or keep one.

I’m tired and scattered today. I went to a dentist appointment at the public clinic only to be told it had been both made and cancelled on Friday when they called me. SO I’ll work up to it again on the 20th. I think it’s for getting my front fillings redone. I never had dentist anxiety til when I was 20 and they pointed out the enamel damage from a combination of overbrushing and bulimia. Fun. So those of the caps I’m probably getting fixed.

But I’m excited! About the people I’mma gonna meet!

PROTEST: Break the poverty machine | International Day to Eradicate Poverty

Join us this Monday the 17th, in Adelaide or Online or in Newcastle to protest for a better future for welfare recipients. To Break The Poverty Machine!

Lookies ! made pictures for Newcastle! Seeya outside Newcastle Centrelink 11am Monday October 17th!!!

Borderline Personality Disorder (BPD) Awareness Week 2022 – See the person

Hey, it me!

Let me preface this post with I’m not an expert on anything other than myself and I’m still learning bout her too. This is not medical advice and I’m sure you can argue against any of my points, but this is how I currently see the fun world that is having Borderline Personality Disorder and it will likely change again over time, come back to this post for next year’s BPD awareness week and shudder at my naivety!

See the person is the theme for this year’s BPD Awareness Week here in Australia.

People living with borderline personality disorder (BPD) often find that their diagnosis is the first and only thing other people see. The 2022 BPD Awareness Week campaign encourages everyone to see the person alongside their BPD diagnosis, symptoms and survival actions. We’re all complete and unique individuals, each with our own strengths and challenges.

The growing body of mental health knowledge recognises the diversity of life experiences: the role genetics can play, experiences of gender identity, sexual orientation, neurodiversity or trauma can all contribute to our well-being. It’s a universal experience to be assigned various labels throughout our lifetime – and many people living with a BPD diagnosis experience stigma. We all share the fundamental need to be treated with respect and dignity, free from stigma and discrimination.

This year’s message reminds us to look at the person alongside the labels, ask what their experiences are and how they continue to make sense of the world. For carers, family, friends, supporters and clinicians it’s a reminder that underneath negative or harmful coping behaviours a person can often be struggling. Let’s celebrate the person they are alongside their diagnosis, acknowledging their strengths, resilience and courage in order to SEE THE PERSON !

This campaign is informative and educational, having been co-designed and co-produced by the strong voices of people with lived experience to promote recovery, positivity and hope.

So, what is Borderline Personality Disorder?

Borderline Personality Disorder (BPD) is a complex mental disorder that is often misunderstood. People with this disorder are frequently discriminated against and stigmatised.Symptoms for people with this disorder may include emotional distress, self-harm, difficulty relating to others and the world around them. This can be very distressing for the person and for people close to them.Currently between 2% and 5% of Australians are affected by BPD at some stage in their lives. The symptoms of the disorder usually first appear in mid to late teens or in early adulthood, with women three times more likely to be diagnosed with BPD than men.The causes of BPD are not fully understood. They are likely to involve biological, social and/or environmental factors. For some people these factors may relate to childhood experiences of trauma or neglect.Contrary to common belief, people with BPD can recover! With early diagnosis, appropriate treatment and support the prognosis for people with BPD is positive.Having BPD is not deliberate; it is a disorder people do not choose to have. People can recover!”

Well, you can get a diagnosis of BPD when you meet 5 of the 9 diagnostic criteria.

  • frantic efforts to avoid real or imaginary abandonment
  • consistently intense and unstable relationships with other people, alternating between idealising them and devaluing them
  • persistently distorted self-image or sense of self
  • at least 2 impulsive behaviours that are potentially self-damaging
  • ongoing self-harming behaviour, suicidal behaviour or threats
  • intense feelings lasting hours to days
  • long-term, chronic feelings of emptiness
  • difficulty controlling intense and inappropriate anger
  • feeling disconnected from reality, or having paranoid thoughts

It doesn’t matter which ones, and the ones you meet can change over time, and you can have only 4 and technically not “have BPD” but still be suffering. You can go back to meeting the criteria after “Remission”, because while therapy and medication have their place, BPD is not a simple “chemical imbalance” you can fix with the the right medication regime, and DBT and other therapies can have a huge impact on your life, but again it’s not a one-size-fits all thing, as you can imagine being such a variable diagnosis. Since you only need 5/9 to meet it, it’s possible me and my friend with BPD only share one of the criteria, and so present extremely differently.

Why people come to be diagnosed with BPD is also such a varied path. This might seem a little reductive, but I’m starting to notice to main streams in the people I’ve met with BPD, which overlap many times. There’s the group that have experienced clear, pin-pointable trauma and those who struggled to regulate their emotions and interactions with the world for as long as they can remember and then they get to teenagers or adulthood and can’t hide it any more and it gets messy. Of course they overlap, with the second group unfortunately finding themselves vulnerable to mistreatment and abuse that leads to trauma, but they seem to be the two main “paths to BPD”. Many of the second group look back into their childhoods and realise that they may have been living with Autism or ADHD but not had it recognised as they weren’t classically Autistic, which led to them developing the coping strategies that are BPD in order to attempt to function in this world. Others are the Queer Kids, not fitting in gender or sexuality wise and tried to fit in so badly that they came to grief. BOD seems to come from trying to fit into the world when you’re not the right fit, trying so hard, but just not getting it right.

The diagnostic label of Complex-Post Traumatic Stress Disorder (C-PTSD) is being used more widely in recent years, and often to do with that first group, the survivors of Childhood Sexual Assault or other traumas in their formative years. Organisations like The Australian BPD Foundation are even looking to make their names more inclusive of these extremely similar and even overlapping disorders than impact the lives of those living with them significantly.

If we didn’t have to have diagnostic labels to access supports, it really wouldn’t matter whether you considered yourself to be Autistic, Borderline, CPTSD, a survivor, ADHD, Queer or any other thing trying to fit into this world, but it does, from needing to meet the BOD criteria to access Dialectical Behavior Therapy programs, to knowing you have ADHD to get the right medications, to being “Autistic enough” to access the NDIS, or getting the right paperwork together to get DSP. The world needs us to have labels, and they really do help in gaining an understanding of yourself, and learning how you work and how to figure out how to function or even thrive in this world. Early diagnosis and understanding is such a preventative thing, and I’m glad that children get ADHD and Autism recoginsed younger and younger because it means we can help them and help them to help themselves at this early stage, while we’re able to coach and comfort them, because it “Gets messy” as it does for many in their teens.

I call myself Borderline and Autistic, I strongly saw myself in the BPD criteria the first time I read them a little over ten year ago. I worked in Autism organisations in my 20s and 30s and never ticked that the Fiona I grew up as could be considered Autistic, but getting to know more and more Autistic and ADHD and other neurodiverse adults I’m able to learn about the parts of Autism that I “have”, how the sensory world works for me, how I operate socially, how I communicate, how I need to time and space to regain my  social and sensory spoons after doing the things I love and the things I want to do. How caffeine affects or doesn’t affect me and whether that points to ADHD lol. I remember being called out at work by managers about how I operated in meetings or interview and I can really see now how that might have seemed odd, but also if only I understood that I could be “on the  spectrum” it would have made sense. I don’t have an Autism diagnosis, and I’m lucky enough to not have top seek one at this stage because it’s bloody expensive. So I just work on understanding and educating myself, and working with who I cam to be the Fiona I wanna be, BPD or no BPD.

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Happy Borderline Personality Disorder Awareness Week – This is me!