Disabled in Lockdown

I’m one of the 4.8 million (1 in 5) Australians that had a mental illness before Covid struck, specifically Complex PTSD and a Dissociative Disorder from childhood sexual, physical and emotional trauma. My son has a diagnosis of Autism Spectrum Disorder with a sprinkling of ADHD. We both rely on weekly face-to-face specialist intervention to go about our daily lives.

For almost a year now, Covid seemed like a thing of the past. New South Wales, Australia had survived the first onslaught of Covid early-to-mid last year without having to reach the level of shutdown, daily deaths or hospitalisations that other countries faced. In Sydney, we came out of lockdown vaguely around September last year and I felt rather proud of how our Premier handled it and felt lucky to be an Australian.

Then mid June 2021, the day before the mid-year school holidays begun, Delta hit our shores plunging the Greater Sydney area into Stage 1 lockdown. By the start of Term 2, all schools were closed to children of non-essential workers so I commence Week 3 of home schooling wondering how I would manage given I work 3 days a week and my child requires constant monitoring due to his disability.

Incidentally this was also the week that I commenced a mental breakdown of sorts because, why not, I suppose. I’m long overdue for one plus a breakdown should always be undertaken at the most inconvenient time when it will have the most dramatic effect on those around you.

Prior to lockdown, a dissociative part of me – Faith – had reached a trust turning point with Psychologist J that involved him sitting in close proximity and occasionally offering his hand for her to hold as she relayed what sexually perverse act was being done to her in whatever flashback she was stuck in. Unfortunately, he also forgot to explain to Faith that when he goes on leave he isn’t reachable. So in the middle of the school holidays lockdown, 2 weeks after the death of my 18 year old dog and shortly after my husband and I commenced couples counselling with a male therapist who sat opposite me which resulted in a panic attack and multiple flashbacks later that day, when Faith called Psychologist J in existential distress, he didn’t return her call. She felt frightened and abandoned and confused.

When you have a dissociative disorder, which necessarily involves a fragmented sense of self in order to make use of dangerous caregivers, routine and familiarity are essential to give you clues about who you are and who you’re with. A small change in someone’s appearance can render them unfamiliar to many of my dissociative parts. In fact there are very few people who I can maintain my sense of self around if that other person has changed their appearance or we have changed our location. In three short weeks, Covid had rendered my whole life and largely myself unrecognisable to me. My child was at home, my co-workers had vanished, my friends cancelled catch-ups, my dog had died, and my therapist had vanished.

Faith hung up the phone after leaving J a message, tried to stop hyperventilating, wiped her tears and felt that familiar intense terror where her head seems to expand in all directions as though it will swallow up the whole world. After a moment, she checked her phone and saw a text message from the husband asking her to come home. She turned the key and began to drive home from the cricket oval but quickly found herself in tears again. I don’t want to go home. I don’t want to go home. Faith pulled over again, her shoulders hunched as waves of pain rolled through her. Eventually, some other dissociative part took over to make the rest of the drive home.

It was shortly after this that Psychologist J emailed to say that due to Covid, he was going to Telehealth appointments only. “Some folks prefer to Skype and others prefer to talk by phone. I will be guided by whatever suits you best,” he wrote cheerfully. Faith replied rather curtly that neither of these were options for her because some folks have a dissociative disorder which means they won’t recognise their therapist in his own home and also have an autistic child who won’t understand how to give them privacy to have a Skype call with their therapist. It was the start of another rupture for Faith and J.

Joyfully, by week 2 of the term, week 4 of lockdown, my child was back in school because NIGHTMARE if he wasn’t but also because he needed to be and was allowed to due to having a disability. At that point I’d had my fill of home schooling and Psychologist J and I had experimented with sending one email each instead of having a Skype session (experiment = extreme failure, do not recommend especially during rupture) so I was like ok he needs to go to school before I go insane and also I can’t cope with losing game 368 of Monopoly to a child maths genius. Luckily his teacher also agreed it was essential he go back to school especially as the main purpose of him attending a mainstream school is to learn to adapt to the horrors of being neurodiverse in a neurotypical world.

It’s now the end of week 6 of lockdown. Some local government areas (LGAs) such as mine have been in Stage 4 lockdown (permission to leave one’s home for essential goods and brief exercise within a 5km radius) and will remain this way indefinitely as the state battles to control the Delta variant with a National shortage of the Pfizer vaccines and a surplus of Astra Zeneca that only the ultra “brave” dare take due to various forms of media branding the Astra Zeneca the grim reaper in needle form. Each day or so the Premiers of the various states put out another statement that sounds like either Charlie Brown’s teacher or a school child blaming another school child for something they did.

Personally, I feel like disabled people are being forgotten in this lockdown despite being in a high risk category but I don’t know why that surprises me. I wonder how many disabled people struggle to advocate for themselves or are simply sick of having to always advocate.

Initially, my son’s therapy continued face-to-face, but as the numbers grow, all of his therapy has gone to Telehealth AGAIN which is stupid for a child with ASD and ADHD. Doing occupational therapy over Zoom is just pointless. You can’t substitute gross motor work in sensory gym with talking over screens. His speech therapy would have continued face to face except his therapist lives in another Stage 4 lockdown LGA so he’s having fairly pointless Zoom sessions. His speech therapy involved him and the therapist playing with toys together (to learn social skills and resilience and flexible thinking etc). But I suppose, him falling further behind his peers isn’t a priority when people’s lives are at stake.

I also know a friend of a friend who relies on people coming into his home several times a week to assist with his disability. But now no one is allowed to come into his house because he’s also in one of those heavily locked down LGAs and yet his disability support provider continues to take his NDIS (National Disability Insurance Scheme) funds weekly despite him having no support provided. He also can’t get access to a vaccine any quicker than anyone else his age despite having a breathing problem for which his surgery was put on hold because it was deemed “non-essential” (?!?!?) These are only three disabled people’s struggles. I’m sure there are many more far worse.

I’m most livid about Gladys Berejiklian almost randomly deciding that Year 12 students should all be mass vaccinated so they can return to school asap. In order for this to happen, people in rural NSW received a text message saying their vaccine appointment had been cancelled so their shot could be given to a student. I read about one woman in Newcastle (hardly rural!) who received such a text message and was absolutely enraged given that she had a compromised immune system and was in cancer remission. In her words, “I’m tired of fighting for my life.”

Psychologist J and I attempted three Skype sessions with varying poor outcomes. It isn’t ideal to be confronting memories of being a prisoner in my own home as a child at a time when I’m a prisoner in my own home. Even though my son was at school I found it hard to find a spot in my home to take a Skype call. In by bedroom? Too weird. The spare bedroom? Still too weird. My son’s bedroom? NO. The back yard? What if the neighbours heard? In the loungeroom? Not ideal since it is adjacent to the study where my husband works from home. In the dining room? Also not idea because I need to be comfortable to be able to discuss trauma and a rigid Ikea dinning chair is not the place for comfort. Eventually my husband agreed to squirrel himself away in our bedroom while I take the Skype call in the lounge room. I decide I feel safest sitting on the floor with my back against the lounge.

The moment Psychologist J calls, the sound of the ringing sends my body into fight/flight. I accept the call and I see a stranger in a room in a house I’ve never seen before. He starts to talk but at this stage I have my camera and microphone off. I struggle to recognise the person or the voice because I’m staring at a 2 dimensional image, not a real person, something electric, metallic, robotic. To my horror, I realise that a video call mimics the effects of derealisation.

He blurs the background of the room presumably so I don’t see what appears to be the loungeroom of a wealthy person decorated by Sherlock Holmes after he went to a vintage flea market. The blurring intensifies the derealisation effect. I panic and slam the lap top screen shut. Moments later he messages me.

The three sessions continued in this manner with me mostly unable to turn on my camera or speak.

When I do speak, it is extremely difficult to locate my voice box as I struggle with the effects of somatic freeze states. When my camera is on, I find myself frequently dissociated, staring at the walls in my home half in a rape flashback half wondering who it is staring at me from my laptop screen while I’m being raped. There are brief moments when I have a vague recollection of who he is but those are scattered amongst panic attacks, crying, distress, frequent hang ups and general confusion. There are less dramatic interruptions like the time his dog breaks into his lounge room and I find myself unable to concentrate on his explanation of some psychological phenomena because a fluffy white poodle-cross is padding towards him tail a-flurry. After three sessions like this we both agree it’s best to abandon Telehealth.

Luckily for me, he was soon fully vaccinated so I return to appointments in his office. I’ve had three appointments face to face and though it is better than Skype it’s not without problems. With his mask on, he is largely still unrecognisable to all parts of me and because he has to keep his distance, Faith is unable to recognise him at all as the same person she was finding trust and safety with pre-lockdown meaning Faith and J remain in rupture. With my mask on, I find myself falling into a flashbacks at breakneck speed especially since suffocation featured prominently in my childhood experiences. In one session as I found myself falling into such a flashback, I managed to get up from the chair and run from the room to the safety of the public toilet where I ripped off my mask, flopped to the ground crying and hyperventilating. Thankfully, he allowed me to conduct the rest of that session without my mask on.

Each day NSW Health reports on the number of new cases, the number of hospitalisations and the number of deaths. I wish they would report daily on the psychological impacts of prolonged lockdown. There have been reports from various countries of the sharp increase in domestic violence, suicides and worsening mental health but it doesn’t seem to be considered as relevant as the physical effects of Covid nor do they seem to take into consideration that disabled people are more likely to experience trauma than non-disabled people (I don’t have a study to back this up but being vulnerable they’re at greater risk of abuse due to power imbalances in the relationships whether they be with medical professionals or in personal relationships or from parental abuse or school yard bullying).

I wonder how the Government plans to manage the psychological impact of Covid, specifically prolonged lockdown. While they have provided some Medicare Covid options that can be applied to psychology appointments, the number they provide and the time frame to make use of them indicates how little understanding prevails around trauma. I read about a child who wasn’t able to be in the hospice room of his dying father due to the people-per-room ratio. He isn’t going to get much healing out of 10 Government funded Telehealth sessions. Will this child go on to have anger management issues, drug addiction, alcohol issues? Maybe, but the Government will never be held accountable for it’s role in that child’s trauma. And if that child’s trauma is not resolved and that child grows up to have a child of their own, it sprouts a seed of generational trauma.

I think lockdown is best suited to introverts who live alone looking for validation for their stay at home habits. It is most definitely NOT designed for children of working parents in the midst of a marriage crisis especially children with ADHD or sensory seeking tendencies who have grown accustomed to going to the park every day after school. My son has pulled apart our couch to construct a pillow slide down our staircase one too many times but if he doesn’t do that he will quite literally bounce off the walls. The chalk is all used up, all the toys have been played with 76 times, so everyday objects become his new experimental play things; toilet paper is unravelled to make car race tracks, the bath is filled with food colouring mixed with moisturiser, he’s hording our recycling to create box structures. A daily walk doesn’t quite expel enough energy from him so he’s also taken to imitating car alarms or climbing us in lieu of park apparatus. There’s frequent untangling of legs from around my neck and I’m almost certainly going deaf in one ear. But I’m alive, not in a mental hospital and this lockdown will surely end eventually. On Monday I’ll receive my first long awaited Pfizer shot. I can’t wait.