Robin gets emotional on Twitter part 2

cw assisted suicide

 

This week the assisted suicide (“voluntary assisted dying”) bill passed the Victorian Lower House. I haven’t stop feeling queasy since. I knew it was going to be shit but I was still somehow unprepared for how incredibly hurt & unsafe & vulnerable i am feeling in response to the overwhelming uncritically positive response of the nondisabled aussie left to the news.

This is the second twitter rant I’ve been on this week – a(nother) mate transcribed it for me for accessibility purposes & because I’m working on getting this into a less incomprehensible article format.

Turns out there might be hope yet – a couple of Upper House MPs have quite dramatically changed their minds at the last minute so the vote’s actually looking a bit precarious, though at the moment it still looks like it’ll go through. The Upper House vote is on Halloween (Oct 31). If you can contact our MPs please do so. Disabled voices are not being heard on this and at the very least whatever vote they make should be an informed one.

Thread is here, full text is below

 

  1. Pro-assisted suicide folks, these are yr comrades. This in reply to disclosure of terminal illness & suicidality. Are you uncomfortable yet?
    1. @songheart@Songheart
    2. Replying to @robinmarceline @mirandadevine
    3. Fuck off and get over it. Reality is a democracy is for all the people, not just a few whingers. You were outvoted move on.
  2. If you are creating laws that are in theory supposed to enshrine the autonomy & dignity of terminally ill people – LISTEN TO US.
  3. And if in response to your laws we say we do not feel our autonomy/dignity are being preserved – don’t tell us to “fuck off & get over it”
  4. The Victorian law is a law that applies solely to terminally ill & disabled people, created by & voted on solely by abled people.
  5. I am terminally ill. I am degeneratively disabled. I struggle with suicidality every damn day. & I am telling you the law is dangerous.
  6. Some terminally ill & disabled people who are suicidal might disagree bc they feel justified in their suicidality.
  7. Sorry, but every suicidal person feels justified in their suicidality. That’s how suicidal ideation works.
  8. It’s deeply ableist to claim yr suicidality as a terminally ill/physically disabled person is more “sane”/”rational” than a depressed person
  9. Your (our) suffering is not more profound than a depressed person’s. A depressed person’s suffering is not by nature temporary or less dire
  10. If you are terminally ill &/or degeneratively disabled but not suicidal & you agree with the bill – why? interrogate yr subject position
  11. If you are terminally ill &/or degeneratively disabled but not suicidal but think u may become suicidal in the future – that is hypothetical
  12. You can’t speak on behalf of yr hypothetical future self whose life, pain, function, ability are different to your own
  13. *Anyone* can become disabled but that doesnt give you the right to speak on behalf of ppl who are disabled & marginalised NOW
  14. So much of the ethics of assisted suicide is about enshrining the right to opt out of a disabled life *that you have not yet experienced*
  15. What do you think that says to those of us who are currently living that life?
  16. What gives you the right to speak on our behalf? We are capable of speaking for ourselves
  17. If you are not a person who the bill CURRENTLY applies to, you really need to question yr assumptions about yr stance & what informs it
  18. So many anecdotes about “my aunt/grandmother/sibling died in pain or is dying” – no. Yr aunt/grandmother/sibling can speak on this. Not you
  19. It is legitimate & admirable to want to aid suffering & marginalisation that you have been a witness to. But you cant determine what we need
  20. You can’t determine what is best for us or how best to help us without consulting us. You can’t determine how to help us in our absence
  21. That the Victorian bill is overwhelmingly criticised & protested by both the people it applies to & the experts in the field speaks volumes
  22. Sources, since so many ppl questioned my right to speak with my community
    1. https://www.spectator.com.au/2017/08/a-message-to-victorians-on-euthanasia/
  23. The disabled opposition to assisted suicide legislation is not a minority view nor is it limited solely to Australia
    1. http://notdeadyet.org/disability-groups-opposed-to-assisted-suicide-laws
  24. Nor is it recent.
    1. https://www.theguardian.com/commentisfree/2013/oct/18/disability-euthanasia-assisted-dying
  25. If our opposition is new to you – be terrified by that. It means you have been ignoring us this entire time.
  26. Palliative care drs overwhelmingly oppose assisted suicide. There are exceptions, usually individual.
    1. http://www.abc.net.au/news/2016-12-05/doctors-warn-against-euthanasia-move/8091718
  27. This too is international. Including in areas where it is legal
    1. https://www.physiciansforlife.ca/resources/all-resources/euthanasia-assisted-suicide-palliative-end-of-life-care/ …
  28. If you think that opposition to assisted suicide is the realm of Christians & anti-choice zealots only you are wrong
    1. https://www.doctorportal.com.au/mjainsight/2017/10/palliative-care-euthanasia-and-physician-assisted-suicide/ …
  29. For the record, I oppose any form of assisted suicide that applies only to disabled people, with Australia’s current healthcare situation
  30. I reiterate again that I am not opposed to suicide itself. I have attempted it in the past, many times. It would be hypocritical of me.
  31. But suicide is already legal. And easy. Terribly, terribly easy. There are many swift and painless ways to die. I avoid them every day
  32. The Victorian law is not about ending the suffering of terminally ill & disabled people. It is about ending terminally ill & disabled people
  33. If you want to end our suffering – legislate for better palliative care. We need it, desperately. We need palliative reform with or w/out AS
  34. If you want to end our suffering – legislate for free, accessible healthcare. Legislate for our right to access pain medication. It is hard!
  35. There is a huge amount of stigma around “drugseekers” and it is actually incredibly difficult to get adequate pain meds
  36. My joints dislocate spontaneously every day & you know what the pain management protocol is? Start with Panadol
  37. Panadol/paracetamol and other NSAIDs in the same class, by the way, don’t even work on me. No effect. Same w many who have my condition
  38. Next tier – anti-inflammatories that aren’t in themselves analgesics. Then medications like panadeine forte w small amount of codeine
  39. Again, does nothing for me & many others with EDS. But I had to prove this by working my way up, by being a “good” patient.
  40. Then neuropathic analgesics like pregabalin and gabapentin. Pregabalin (aka Lyrica) FUCKED ME UP. Withdrawal was HELL
  41. Many drs don’t even know that pregabalin is highly addictive & withdrawal is vile. It isnt considered of risk bc theres no recreational use
  42. And again, it did nothing for me – my pain is not neuropathic, it is from lax connective tissue & frequent dislocations.
  43. Pregabalin frequently induces psychosis that can lead to permanent neurological changes. It makes u feel like a zombie. It’s so rough
  44. It works really well for maybe 50% of people with conditions like fibromyalgia, but it doesnt even work for everyone w neuropathic pain
  45. There was no reason to think it would have helped me. I have narcolepsy & it causes drowsiness & dizziness, should have been contraindicated
  46. But as a “chronic non-cancer patient” (this is the terminology used) I had to follow a particular pathway. It was that or nothing.
  47. Btw: “Let me assure you that many EDS patients have pain far beyond any cancer patient I’ve ever seen.” Dr Forest Tennant, pain specialist
  48. This is not to invalidate cancer pain. But cancer is not the only condition that causes pain. & different cancers cause diff amounts of pain
  49. I have known many ppl with EDS who also have or have had cancer & honestly cancer is a lot more treatable. There are no Aus EDS specialists
  50. Cancer has a social legitimacy that EDS does not, is recognisable in a way EDS & many other chronic, degenerative, terminal conditions r not
  51. (Most types of EDS are not terminal btw – I am terminal due to a combination of vascular EDS & comorbid conditions incl aortic aneurysm)
  52. Regardless, my terminal, severe pain does not qualify me for the same treatment pathways as cancer. So paracetamol thru to pregabalin —
  53. — & after that tramadol. Tramadol is a low level opiate (which codeine also technically is) & makes me nauseous/dizzy, does little for pain
  54. After that we r in the realm of the “opioid crisis”. Of “opiate addicted chronic pain patients”. We r told yoga, TENS, massage, acupuncture
  55. Even when we are terminal. Even when our pain is severe. Suicidally severe.
  56. Some people are able to access morphine drips etc. I have adverse reactions to morphine. Cortisone injections contraindicated
  57. My rheumatologist suggested fentanyl patches. I was hesitant bc I had recently had an episode of respiratory arrest, cause as yet unknown
  58. (Turns out it was bc my unstable first rib had been compressing my trachea & my carotid artery. Happens often, sometimes lungs deflate)
  59. (I have been prescribed oxygen by my respiratory specialist but guess what – I can’t afford it. It’s nearly $100/month)
  60. (let me remind you here that I have been rejected from the DSP 5 times in 3 yrs including an appeal to the Administrative Appeals Tribunal)
  61. (I am on Newstart w jobseeking requirements waived due to disability. $1165.60 per month, $973/month if I have a partner)
  62. (not insignificant, but not enough considering I have had a single day’s worth of CTs & ultrasounds rack up $1500. MRIs usually around $300)
  63. Anyway my hesitancy wrt a fentanyl prescription led my rheum to somehow conclude it had been advised against by my psychiatrist (it hadnt)
  64. So that’s no longer an option even though I now know the resp arrest wasnt due to anything that could cause risk w fentanyl.
  65. Asked my psychiatrist to clarify that he hadn’t advised against it – he told me to come in for an appointment. They’re $360-$560 each, 45min
  66. Not an option, not worth it for a prescription I’m conflicted about anyway. But this leaves me with nothing. No pain control. None at all.
  67. Heat packs help. Diazepam as a muscle relaxant also helps but is controlled & difficult to get prescriptions for. I’ve had 35mg this yr
  68. Medical marijuana has been shown 2 help enormously in many EDS patients & has been given my neurosurgeon’s blessing, but isnt dispensed here
  69. Federally legal, legal to be prescribed, legal to be grown for own use, but not being legally dispensed. Unhelpful.
  70. So I struggle by with heat packs and bath salts while my spine dislocates, while cerebrospinal fluid is leaking out of my ears & nose
  71. Medical knowledge of EDS is scarce but studies generally conclude death from vEDS is most common in teens & 20s. I am 24
  72. My congenitally deformed & dilated heart would have maybe 5-10 yrs left in it if I was very lucky & did not have vEDS. As it is, ???
  73. (vEDS causes spontaneous arterial & organ rupture. Not ideal for an aortic aneurysm. Have already had eardrum & uterine ruptures)
  74. I don’t know how long I have left but I know I would have longer if there were home visit dr programs in my area, if i had pain meds,
  75. if my council’s meals on wheels program could cater to allergy requirements, if there were EDS specialists in my country let alone city,
  76. if I could access any of the 4 closest train stations to my home, if my physiotherapy & neuro & rheum appointments weren’t so expensive
  77. This is the medical system we have now. This is the world you want to bring assisted suicide legislation into.
  78. Maybe future healthcare reform will happen. I hope so. Will I be around to see it? I don’t know. But the AS laws are passing NOW
  79. And I am afraid. I know that I am going to die spontaneously and unpredictably. Likely either my heart or my bowel will rupture.
  80. It will hurt. It will be messy. I do not want my loved ones to find my body. I dont want it to happen in a lecture & traumatise 300 other ppl
  81. Does assisted suicide legislation sound tempting after all that? Yes. God, yes. That’s what makes it so scary.
  82. “A person who is otherwise eligible (due to another disease, illness or medical condition)but who also has a mental illness or a disability
  83. — is not excluded only because they have the mental illness or disability.”
  84. 2 GP appointments. 10 days. I qualify under the law. It would be so easy.
  85. But I could live. Maybe not for long. Maybe not at all. But there is a chance. Disabled people considered terminal sometimes live for decades
  86. I could be happy. I could publish more poems. I could finish my Honours thesis. I could undertake a PhD, maybe even finish one.
  87. I could find love again. For seven months out of this year I was engaged and I was the happiest I’ve ever been in my life.
  88. I’m crying as I write this haha. Pls dont think that I am any braver or more resilient than you. I’m a fucking mess
  89. But I could live. There is a chance that I could live and love. But w/out pain medication? W/out physiotherapy? W/out accessible environs?
  90. & When assisted suicide is legal an hour’s flight & ten days away? When I am grieving a marriage that never happened & might never be legal?
  91. I am going to try. But please, please understand how fucking difficult it is to do so. It is so easy to die & so hard to live
  92. You don’t have to oppose assisted suicide. But please at least let us decide for ourselves what is best for our lives. Not on our behalfs.
  93. Please at least fight as hard for healthcare reform as you fight for assisted suicide. Please at least fight for a *less bad* AS bill
  94. And when assisted suicide comes to NSW in a couple of months – Do not make the same mistakes. And maybe don’t let me go to my GP alone.

 

 

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