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Parliament votes to give disabled people the right to a good life

Written By: - Date published: 11:55 am, October 24th, 2019 - 23 comments
Categories: death with dignity, disability, Social issues - Tags: , ,

Only that didn’t happen. Instead, the New Zealand Parliament is going to let the voting public decide next year if we should have the right to kill ourselves if we are terminally ill.

I’m theoretically in favour of right to die legislation and state support for humane methods. There are compelling reasons for empowering individuals to have choice and agency in how they manage personal suffering. But it’s backwards to have such legislation, or even public debate about it, without first looking at how to give disabled people and the elderly the right to live a good life.

There is the clear issue of the risk to vulnerable people being directly or indirectly coerced into dying early. Further, a society that actively ignores the well-being of disabled people as well as their voices in public discourse is a society that has no moral mandate to claim it can protect vulnerable people when the need arises.

The social theory of disability gives us the model that disability doesn’t arise from health conditions or physical/mental impairment, but instead is created by how society organises and structures itself. Impairment is what happens in our bodies and minds, but disability is constructed with external barriers specific to that impairment. Someone who relies on a wheelchair for mobility becomes disabled when they need to access a building that has stairs but no ramp. Society built that disability into the building when it decided what human functions were important. 

As we become aware of this dynamic we then tend to try to remedy it by adding on mitigations. I see this a lot in online discussions about transitioning society from a car culture to a walk/bike/public transport culture. Such discussions are invariably driven by able-bodied people who tack on examples of bikes disabled people can use instead of addressing the poorly designed public space at source. That some disabled people can use certain tech does sweet fuck all for the ones that can’t.

When I look at these spaces I see the full range of abilities that humans have (including the ones invisible to me) and how to design them by centering disabled people rather than trying to add their needs on afterwards.

If you centre disabled people you end  up with a design for everyone. Old school, I first learned this from tramping, as a child, later as a fit young person, and in family groups that included elderly people. You put the slowest person at the head of the line. This doesn’t stop fast people from ranging ahead, it means that the whole group looks after everyone as a matter of course.

If the perspectives of disabled people aren’t centred in the euthanasia debate, then the discussion itself is a failure. An election campaign where disabled people will now have to fight to be heard, because of the barriers put in the way by society, is the social theory of disability writ large. This is badly designed process from a society that doesn’t yet understand that valuing all abilities helps us all. I’m already hearing the voices that will be lost in the cacophony of the election campaign, as well as those that won’t even be in the room.

Given how wealthy and resourced we are as a country,  we’re actually pretty shit at ensuring well-being for disabled people. We knowingly and intentionally leave people with disabilities to live in long term poverty. There’s a woman I follow on twitter who for a long time couldn’t shower at home because she rented and there was no housing available for her with an accessible shower. I see people in Wellington talking about not being able to go out at night because there is no public transport for people in wheelchairs.

We lock autistic people up in closed rooms at schools or in psych units because we won’t look after them properly, either from ignorance or bloody-mindedness. There’s a case in the news this week of elder abuse and neglect in a rest home and the Health and Disability Commissioner being unable to do much about it. The Ministry of Health has been trying to surreptitiously decrease disability support funding. They cut homehelp to elderly people some years ago, under National but I don’t think Labour have reinstated it.

Those examples are off the top of my head, without having to think too hard about it because the stories are legion. It’s politically one of the most difficult issues we face because even on the left, where we are supposed hold the moral high ground on well-being, we are still not getting it.

Rather than pushing on with euthanasia legislation, and rather than resiling from the need to confront how to die well, a step in the right direction would be a national conversation about what well-being is for disabled people, a conversation that centres those people and lets them lead the way.

23 comments on “Parliament votes to give disabled people the right to a good life”

  1. Sabine 1

    you can't have the discussion about one and exclude the other. sorry but that does not work that way. I would also like to consider that not every disability is equal, that some of the abled people today may get diagnosed with a terminal illness tomorrow, that some disabilities allow for a good and ‘productive” ( this is of course in the eye of the beholder) lives that last long, and some disabilities kill you of slowly one loss of a bodily function after another. This needs to be acknowledged. . 

    Death is part of life, and for some the right to organize their death to their desires is part of a good life. 

    I repost this here as it is literally all that in the nutshell of a live lived. 

    https://www.rawstory.com/2019/10/paralympic-champion-marieke-vervoort-ends-life-by-euthanasia/

    But she said at the time that sport had given her a reason to keep living.

     

    “I’m still enjoying every little moment. When the moment comes when I have more bad days than good days, then I have my euthanasia papers, but the time is not there yet,” she told a news conference during the 2016 Paralympic Games………………..

    “It gives a feeling of rest to people,” she said then.

    “If I hadn’t gotten those (euthanasia) papers I think I would already have committed suicide because it’s very hard to live with so much pain and suffering and this unsureness.

    “I know when it’s enough for me, I have those papers.”

    bold added by me.

     

    • weka 1.1

      People with terminal illnesses are part of the group 'disabled people'.

      I'm not excluding anything, I'm saying that to have a discussion about euthanasia there is an ethical imperative to have a discussion about the wellbeing of disabled people first. And to centre disabled people in that (which includes the terminally ill).

      If we start with the right to die legislation before we've even had the conversation about well-being, then it's arse about face and will lead to an increase in harm to disabled people. If we want to take that risk, we should be more honest about it and the trade off.

      • Sabine 1.1.1

        Honestly what is it with people and their fear of death. We all have to die at some stage in our life.

        So no, make death part of our lives again, pain, suffering, grief, funeral and all and maybe then we start giving a little bit more care to those that life – all of them not just some.. 

        I put the article there Weka because this women lived what for me is an abstract concept, living in a body that is slowly decaying/dying. Every day, and giving her the right – the legal right – to plan her own death for when it gets too much for her actually gave her an immense boost to her living quality. How can you simply say that this boost of autonomy, of bodily control, of fulfilment of ones own destiny is not helpful in the discussion about well being of disabled/otherabled/terminally ill/healthy people? 

        You can not discuss illness, terminal illness, without death. They go hand in hand and are best mates. 

        • weka 1.1.1.1

          "How can you simply say that this boost of autonomy, of bodily control, of fulfilment of ones own destiny is not helpful in the discussion about well being of disabled/otherabled/terminally ill/healthy people?"

          I haven't said that at all. It's clear that you have failed to understand the post and my own position on euthanasia. Seems like rather than finding out what I meant and then seeing how that fits with your own ideas,  you want to use the post to push your own agenda /shrug.
           

           

          • Sabine 1.1.1.1.1

            wow.

            thanks. I feel well and truly put in my place. Thanks. 

            • weka 1.1.1.1.1.1

              I'm grumpy at having to read comments that are clearly misrepresenting what I am saying. It's fine for you to talk about your ideas about euthanasia here, but you cross a line when you do that by getting my ideas so wrong.

        • katipo 1.1.1.2

          "Honestly what is it with people and their fear of death."

          More like "what is it with people who would rather support medical medical assisted suicide than addressing pain, suffering, death and grief?"  

  2. The right to achieve as good a life as possible doing things in society as we can, and also the right to choose as good a death as possible, deciding on when we feel we can't do more in the world and receiving loving acceptance, release and liberation.    A pairing of ideas which would raise our society to one we could be proud of, instead of just making do.

     

  3. gsays 3

    Thanks weka, thought provoking post. Great to be able to discuss this without having the religious slur bandied about. Not that I have a problem with the spiritual opposition.

    We are clamouring for this 'right' to end our (and others) life, without considering practicing living.

    It is fairly repugnant to push this on to health professionals. Perhaps lawyers would be a more appropriate place for euthanasia to occur.

    A related observation: where I work we have 10 foot double glazed doors. A reasonably regular client in a wheelchair commented that if the access was easier, she and others would visit nor often. I have empathy for this point of view so relayed the message to the boss.

    His reply was that we are compliant and the extra cost of self-opening ddoors wasn't with it.

    So all legal, a bit unsound morally and money is a factor, similar to some situations around euthanasia.

    • McFlock 3.1

      Your observation illustrates the social theory of disability quite nicely.

      But there's also the other factor, where your boss made the call – do you think it was based on prior research, pitting the cost of the door against some basic figures of e.g. the money your regular client brings in, or whether the proportion of mobility-impaired clients roughly matches the prevalence of mobility impairment in the local population?

      Or did his operating assumptions and blindness to the needs of others make him under-estimate the number of clients and potential clients he was turning away because of this barrier?

      It's one of those situations where removing the social problem makes life better for the powerful, as well as the more vulnerable.

  4. Ad 4

    If the most vulnerable in our society (the really poor, the permanently disabled, the really old) came out to say that they were keenly in support of this bill, that would be a strong signal to me. 

  5. Ad 5

    If the weakest, poorest, oldest and the most disabled in NZ all wanted this bill and said so before the referendum, it would give me food for thought on my vote.

    Sure hope the public cope with the 2 referenda and voting on the day.

    • patricia bremner 5.1

      Ad,  do you remember having to declare any infirmities that could catch your employer out?

      When I declared my scoliosis,  one leg shorter than the other and the possibility of post polio syndrome,  my then Principal said,  "I have never met anyone less disabled in my life!!"

      What he failed to realise was my old age could come sooner and I could have side effects.  

      I often wonder if people who have their DNA analysed feel threatened by possibilities,  and it is rather like  opening Pandora's box.

      Those who live "Half glass full" lives as against the "Half empty glass" crowd view Euthanasia through that lens I think .

  6. gsays 6

    Edit Reply to McFlock.
    From where I sit, I would say it is the latter. "Or did his operating assumptions and blindness to the needs of others make him under-estimate the number of clients and potential clients he was turning away because of this barrier?"

    It was one of our customer's points – more of us would come if it were easier. 

    Plus it is easier to say no when you don't have to say yes.

    It speaks to part of the reservation around euthanasia, there are forces or influences at play impacting on one's right to choose.

  7. cleangreen 7

    yesThank you Weka, We are supportive of your stand here.

    Weka said; quote; "If we start with the right to die legislation before we've even had the conversation about well-being, then it's arse about face and will lead to an increase in harm to disabled people."

    Yes 100%.

    I got poisoned on a job site that almost killed me.

    But 28 yrs later at 75 I am still hanging onto life with hope, for a better life.

    But many doctors would have ruled me out by now if I had not taken care of my health and recovery.

    Today I am medically diagnosed as "Disabled" but i choose to hang onto life for my family as they need me here still including my 8yr old grandson.

    I sent a request for some financial assistance for continual treatment of my disability last week.

    The request went to the Disability Minister and am waiting for a reply.

    • Rosemary McDonald 7.1

      "…am waiting for a reply."

      Please, Cleangreen, don't hold your breath.

       

    • A 7.2

      You will be waiting a long time because the correct process is to make an application like everyone else.  Still, it's good to show the minister some of the reality which they seem to disconnect from soon after voted in.

      Sorry to hear you were poisoned…for a moment I thought you were someone I knew who has spent an absolute fortune on treatment to claw back some recovery over a twenty year period.  He is remarkably functional now but it came at a huge price – he was forced to make a decision on whether to pay for treatment or live in housing.  Had he chosen to not be homeless he would be dead for sure.

      Such is our system.

      The fact is many disabled are reluctant to get behind euthanasia because their basic needs aren't being met by the system (and for anyone who is about to shout, "the state doesn't owe you a living!" the system ensures that some cannot get out unless they win the lottery or inherit because of the specific way disabilities are penalised) 

      Yeah, arse backwards is right.

       

  8. …. '' If you centre disabled people you end  up with a design for everyone. Old school, I first learned this from tramping, as a child, later as a fit young person, and in family groups that included elderly people. You put the slowest person at the head of the line. This doesn’t stop fast people from ranging ahead, it means that the whole group looks after everyone as a matter of course '' …

    Good on ya.

    Bush safety 101.

    You never go faster than the slowest person can handle and they are always at the front . In that way the group acts as a unit and reaches their destination safely.

  9. Lucy 9

    As someone who has ended up in a wheelchair at 58 I can tell you not only are cities not set up for mobility impaired they actively discourage participation by us. Doors are not big enough to fit a wheelchair through, in most disabled toilets it is not possible to enter without another person manipulating the chair. Most doors are too heavy to push whilst in a chair, many automatic doors have a cycle too short if you are in a chair or using a walker. There are times when I would consider euthanasia but mainly because the minimums of our legislation ensures that I am excluded from so many human endeavors and left in such levels of pain. I do not believe that pain is an inevitable cost of chronic illness but most of the drugs that could help are not available until I am dying. And I do not believe that a chronic illness means I am no longer of use to society.

    • Rosemary McDonald 9.1

      Thanks Lucy.

      Re access issues.  My man was speaking to a real estate agent the other day who actually got 'it' when he asked how steep the ramp was into this house the agent had listed.  Peter nearly fell out of his wheelchair with shock…so tired if always having to explain that "It's got a ramp!" does not accessible make.🙄😥

  10. cleangreen 10

    yes Thanks folks I just responded to Joe Carolan on TDB as he had a good article on his workers at the Auckland sky-city fire.

    Here’s my story from journey to my disability.

    https://thedailyblog.co.nz/2019/10/25/fire-in-the-sky-smoke-in-the-city/#comment-479752

    Good subject Joe;

    My story as a Bell Canada Construction site worker during 1992.
    You said it all there, so let me explain.

    “The carpark I arrived into was already heavy with particles and toxins.”

    In 1992 I worked in a building under construction in Toronto called the CBC ‘Canadian Broadcasting Corporation’ opposite the Toronto sky tower and sky dome.

    For six months while working in that CBC building “(without any central air) system working yet” the Construction company “Eastern Construction” said the central air system could not be used as it was because the ‘electronics and the computers’ were not installed.

    So 400 workers faced every day high levels of VOC’s from dangerous two pot epoxy’s and other paints and flooring adhesives and particulates and solvents, at least 40 workers fell sick (me included).

    Since the day my whole systems crashed; including Immune/nervous system/skeletal/muscular and neurological systems had already been damaged to this very day.

    Specialists found the toxins stored in my “adipose tissues” commonly known as fat tissues.

    I had to pay to get a piece of fat taken from my body and sent to a Texas laboratory called “accuchem laboratories” for a GCMS analysis and they found heavy toxins deposited in my body and they found the same in air sample in the building so your workers need a GCMS analysis of their tissues.

    Blood tests are not useful we found and toxicologists there said it was not accurate as the toxins leave the blood systems shortly after exposure where fat/adipose tissue storage is ‘static’ and takes far longer if ever to leave the body.

    After 27yrs later I am still sick medically.

    So please get those workers out now as they are now storing the toxins inside their bodies fat tissues as we speak as we all though we were safe every time we left the CBC building but the damage was already there even though we felt better out of the building the damage was never to leave us healthy again since 1992.

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