This week saw some seriously good news. I heard that the government will amend the Mental Health Act to reduce the sectioning of Britons of colour, as well as removing autism and learning disabilities as reasons to detain someone against their will; potentially indefinitely. See here for more information: https://www.theguardian.com/world/2021/jan/13/mental-health-act-reforms-black-people-sectioned
It shows that, twelve years after the signing of the Autism Act, government is lagging behind its responsibilities. Saying ‘better late than never’ is a horrific way to shrug off the cruelties inflicted upon people over the past 12 years because of a lack of political will, but there are things to celebrate here. Particularly the autistic and learning disabled self-advocates, some of who I know, who have done incredible work. In a fair world, we shouldn’t have to make the case for our humanity, but we do and I am ecstatic at the achievements of my friend and her colleagues. There will be pushback from the right and an energised anti-vax movement, so the fight isn’t over. But there is movement, it is slow and that slowness is itself brutal. But we are making headway.
I had a call this Monday from the Universal Credit office. I hadn’t been paid at all, when I should have been. I was shaking with nerves, because something might have gone wrong. The call I had was about job seeking, I was going to tell them about the jobs I had applied for going forward and that I hadn’t heard back from several interviews as yet. But when I asked about this month’s payment, the man blithely said: “Oh, yeah, we just didn’t pay you anything this month.” Meltdown. Not having money is a huge trigger for me. Having been poor as a child and again when living independently, I melt down if I don’t know where money is going to come from. I was now frightened I would be denied benefits going forward. Not only was I fired for being autistic, then punished for applying for benefits by not being paid at all for a month; I was now denied benefits for being autistic. I felt the council wanted me to die. I become very outcome-focused at those points. If I’m not allowed to make money through work, and not allowed to be paid through benefits; those responsible must want me to suffer. Because I was shouting, the man hung up the phone. I punched and kicked the mattress in the hallway.
My partner was at work in the living room and had to help calm me down. He called his father, who was incredibly supportive and told me that if things were difficult, that he and his wife would help us out. I contacted the AMHT, who were going to call me back. I then spoke on the phone to someone from the Samaritans, because I needed to speak to someone and my partner needed to work. I was very upset and rocking back and forth. I didn’t hurt myself or punch myself. I was very frightened of distracting my partner, as I didn’t want him to be distracted from his work because of me. If neither of us has work. then everything would be lost. The AMHT called me back. By this time I was calming down.
The AMHT worker was brilliant. She gave me the number of the benefits office and that I should call back when I was feeling a bit better. She also said that the Universal Credit staff are known to be pretty callous. I said that if I’d trained them on autism and neurodiversity this would never have happened. If I trained the school in Slough, no-one in my place would have been treated the way I was. Although if I’d been getting training work, I wouldn’t have needed to apply to teach there.
She also would contact a psychiatrist, to check in regarding medication. I needed to reduce the quietiapine to zero. I was surprised that I was already calming down far faster than I would have done six months previous; I might have been in meltdown for hours. This was the main argument for reducing. Meltdowns in the future will still happen, but they’d dissipate faster.
At this time, I had a delivery. I’d been given a voucher as payment for working with a researcher from the University of Newcastle. With it, I bought a weighted blanket. This helped me even more. I was completely calm within two hours. It’s pretty heavy, 11 kg, but I can take the weight. It’s like a salve to the brain.
I called the Universal Credit helpline. The woman I spoke to was amazing. She was calm and apologised for her colleague’s behaviour. Again, the people working to check universal credit applicants seem to be selected for their capacity to treat other people with contempt. This is not uncommon, the Dutch cabinet fell a few days ago, due to a culture of racism, cruelty and hostility to the poor, for more information, see: https://www.theguardian.com/commentisfree/2021/jan/17/in-britain-and-abroad-it-is-easy-to-scapegoat-poor-migrants*
Without letting me know at all, Universal Credit decides on its level of payment based on income over the previous month. Over the month of December, I had been paid for my work the month before and received £200 in holiday pay accrued in 2020. This meant that I didn’t qualify for anything this month. That’s bad enough. but I also hadn’t been able to see that anywhere before the payment was to be made. Only after the payment is made, is the claimant allowed to see the calculation. This was all news to me. I was already annoyed that I was forced to not have income for a month, while I was provided ESA in 2017 immediately; at that point I hadn’t even shown that I could retain a job for three years! It was unnecessary punishment. At a moment of widespread unemployment, it is particularly cruel. With the effects of long Covid being highly serious, even more people will fall into the clutches of an ableist, exclusionary benefits system. We need to change it.
Even the woman I spoke to was convinced of its unfairness. She’d been made redundant last year as her firm didn’t want to furlough her, even at zero extra cost. She had to apply for UC, but didn’t receive any due to requirements that redundancy payments would have to be eaten into until she reached an appropriate level of penury. She agreed that it was unacceptable, but didn’t think anything could be done against it. I just said: “It’s what the people voted for in December 2019.” They did. But we can at least fight and challenge it. It won’t be immediate, but we need a Universal Basic Income, increased for those with disabilities and neurodivergent people. We also need huge investment in creating truly neurodiversey workplaces, using the skills of all involved. When you don’t have money to feed yourself, it’s pretty hard to save the world. But if autistic and learning disabled self-advocates can change the Mental Health Act, then we can create a fairer world, despite those who want to see a country that runs on cruelty and exclusion. Let’s fight.
From tomorrow, I will be reducing medication once again. Over an eight week period, I will go from 200 mg quietiapine to zero, 50 mg every week. As a buffer, I will double the sertraline to 100mg. I will also quit taking Prep for the foreseeable future. Prep, if you’re not aware, is short for pre-exposure prophylaxis, a preventative medicine to stop the spread of Hiv. I’m not going to lie: I’m quite nervous. Reducing medication is rough, but my partner has been there for me before and has promised to send me upstairs without phones or laptops so I can rest. I will have check-ins with my doctor on a biweekly basis. I’ve been signed off sick until the 29th of March so I can properly stabilise. I will continue to tutor and I’ve scheduled any more focused work in the second weeks of reduction. The thing I’m most nervous about is the few days after coming down to zero.
When I reduced clonazepam to zero, I had three days where I was in constant physical and emotional discomfort. I felt I was being cracked open like a walnut. I had constant tremors and an unbearable headache. It must have been what coming off heroin is like. The difference is that clonazepam only made me feel worse. Things did improve. I regained my memory and I stopped falling over constantly. I started losing weight. I was finally able to focus for more than a few minutes at a time. My brain hasn’t yet fully recovered from the 3.5 years of benzodiazepines, it has been a slow process. I don’t know if it ever will. But I’m actually able to function, which I definitely wasn’t from 2012-2015.
Just for that reason, it will be a worthwhile endeavour to go to 0 quietiapine. That drug too, was prescribed to me when I was in hospital, for no good reason but to medicate away meltdowns. Let’s be clear: I’m partly to blame. I wanted to be cured of “being mentally ill”. I wanted to be “normal”. My intention was to rid myself of everything that made me different; the anxiety, the depression and the social awkwardness. I wanted to no longer experience the world as a tidal wave. I absolutely despised myself and wanted curing. Of course, the opposite happened, as it always does. I would need a few more years to awkwardly start accepting myself. The person who is writing this, at 33, cannot be more different than the 24 year old boy who was intent on self-destruction by way of medicine. No more.
Quietiapine, as I’ve said before, is an anti-psychotic, sometimes prescribed against anxiety. Did it work? Not really. It just slowed me down. Additionally, it made sure I would stay stuck in meltdowns for longer. That’s been the biggest gain: my recovery time has reduced significantly. I have more energy. In fact, I’ve been doing HIIT workouts, using my partner’s Insanity DVDs, for the past 11 days. I couldn’t have done that and not burn out before I reduced to 200.
I may not have the spoons to blog every week, so for the next ten weeks, I’ll be writing every two weeks. I hope you understand. I will also be giving another training, in mid-February, on a second week. I am really looking forward to that.
I may even manage to write! My ADHD-like issues have been flaring up recently. I’ve been struggling to focus on reading and writing, even letting my daybook writing slip. Not hearing back from agents, as much I realise they have significant backlogs, is still stressful and makes me doubt the quality of what I’ve written. But I can’t do anything about it. The book is pretty long and reading takes time. I just hope I hear something over the next month. At least the people who’ve read the book have loved it. It’s just those I haven’t heard from. It also won’t have helped that I’ve mostly sent it to other autistics, all of whom have some problems focusing for prolonged periods of time. But we’ll see.
Lastly, some links:
If you are on twitter, please take part in the Twitter storm with the hashtag #JusticeForOsimeBrown. Osime is currently in hospital due to heart problems flaring up over the past few days. He is asleep and slowly getting better. But his unfair imprisonment and still-pending deportation for a crime he didn’t commit have and continue to damage his health. Find out more about Osime, his mother Joan and how to support him here: https://linktr.ee/Justiceforosimebrown
In the meantime, Matthew Rushin is in the Covid ward of his prison, which he will be released from in March. Virginia Governor Northam may have commuted his sentence, but he is still in isolation and being punished for a crime he didn’t commit. Every continuing day is torture. Support his mom and help make sure this will never happen again: https://linktr.ee/justiceformatthewrushin
The Autistic Science Person blog is brilliant and deserves your attention. https://autisticscienceperson.com/
See you either next week or the week after, depending on how my brain is feeling.
* When I was twenty, I was told to leave drama school and I dropped out of uni (I was doing both at the same time). I applied for every job going and was taken on at the Dutch Tax office in Utrecht for a two-week training course. It was a strange place, overwhelmingly white even for Holland, and when we were there, someone had staged a dirty protest in the hallway. You could smell it on the entire floor. In the end, I didn’t get the job. I was told – this is not a joke – that I was “too clever.” They didn’t mean it sarcastically. They genuinely meant I was too intelligent for that work. My friend told me that it was probably because I wasn’t racist (I mean I wasn’t, at least for Dutch standards. Like a lot of 20 year olds, I still had a lot of unpacking to do).