Supported autonomy

Written By: weka - Date published: 9:00 am, August 31st, 2016 - 31 comments
Categories: human rights, Social issues - Tags: autonomy, disability, independence, needs assessment, unique function

The following is a cross-post from Philip Patston.

Philip is a social entrepreneur, diversity specialist, and managing director of Diversity New Zealand. He blogs about his life, work and existential crises as well as sociopolitical issues.

Autonomy is often used to mean independence. Though their dictionary definitions are similar and they are synonyms of each other, I like to talk about autonomy in a slighty different way.

For me, autonomy is having the choice over when I am independent and when I am dependent. It’s similar to the notion of interdependence, except the latter, interdependence, suggests an ongoing process of co-operation or collaboration. Perhaps autonomy could include the choice of interdependence as well, but for now I want to focus on the aspect of choice.

Many disability services have, at their core, a desired outcome of independence. Functioning on one’s own, without the help of others, is considered success. Dependence on others, by comparison, is seen as undesirable, costly and, hence, unsuccessful in the wonderful world of disability service provision. In the even more amazing worlds of case management and needs assessment however, dependence could be synonymous with abject failure — or worse: disaster!

This obsession to make disabled people independent has always seemed absurd to me. No one is completely independent, after all — we depend on builders for houses; lawyers and police for protection (sometimes one from the other); artists to adorn our walls — and so the list goes on. And while cleaning the house is a relatively simple chore, many choose — and still others actually need — to pay others to do it for them.

So if someone, on account of their unique function, can’t — or at least finds it difficult to — get dressed in the morning, why is so much emphasis placed on finding ways for them to do it themselves, independently, no matter the time or effort spent?

When I began to live “independently” at around 20 years of age, I did so with no support, apart from a flatmate who was as — or more — often out than at home. I’d start my day spending an hour abluting and getting dressed, including donning the most horrendously style-destroying footwear — grey sneakers with velcro straps — because I couldn’t tie laces. Then I’d have breakfast, only to have to begin the tortuous task of washing dishes, usually from the day — or more — before.

By about 11am I’d stop for a cigarette, all the while relishing the anticipation of cleaning the house — be it vaccuuming, dusting, cleaning the floors or, god forbid, the frigging toilet. By the time 1 or 2pm came around, I was physically knackered, often in pain and more or less good for nothing for the rest of the day.

But I was being independent.

I can’t remember how long it was that it took me to unbrainwash myself — longer than it should have, given I tend towards masochism as one of my learning edges. But I finally managed to process the cognitive dissonance slowly creeping into my consciousness: if “independence” meant doing nothing more than menial chores in unfashionable shoes, well, I didn’t want to be independent.

So I threw myself into the wonderful world of needs assessment and disability support services (WWNADSS), learning very quickly the two cardinal rules of getting one’s needs met: 1. never say you can do something but it’s difficult; and 2. never say you can do something but it’s difficult. Because something being difficult meant there could be an assistive device, designed to make things easier (ergo increasing independence), but actually badly designed, as unfashionable as velcroed shoes and more than likely useless and more time consuming.

Thus I learnt the valuable lesson of black and white ability — not the competence to change ethnicity but rather that, in the WWNADSS, there were only two answers: 1. I can; and 2. I can’t. Later I learnt a third answer, the dismal future speculation: if I keep doing this one thing now, it’s highly likely to fuck me up so badly that, in 5-10 years’ time, I’ll be unable to do 3 things. Ergo more, perhaps unnecessary dependence now will equate to less independence henceforth. Net result, more independence. Success! Great rule that, folks, learn it.

I exaggerate in jest — this was the 1980s and things are slightly less black and white these days (though its legacy lingers). I write this off the back of a lecture I did with case management students at AUT University yesterday. My point was that they reframe their role, from being the champion of independence, to being a facilitator of supported autonomy. In other words, guiding people to choose where and when in their lives they want to be independent and where and when they want to be dependent. It may seem an obvious change in understanding, but the old independence imperative is still surprisingly prominent in the WWNADSS as well as case management.

Who knows, had I not realised the impact of its potentially paralysing grip on my life, independence could have stopped me writing this post as I look back on a successful 22 years’ professional career. I could still be washing the dishes.

31 comments on “Supported autonomy ”

Comments are now closed

Bill 1

31 August 2016 at 10:28 am

Nice piece. But having problems with the concept of “supported autonomy”. It strikes me as a bit of a contradiction.

If I’m autonomous, I’m empowered. And being empowered, or having full agency, I don’t need to be supported in the usual implied sense of that word. Being autonomous, I call the shots and others may participate in that at my discretion.

That’s at odds with “supported” and its implication that I’m relatively powerless and somewhat dependent on the agenda and timetable of some benevolent cavalry riding out of the sunset.

Maybe that all seems a bit pernickety. Anyway. I guess all I’m saying is that I could and do absolutely support autonomy, but that the idea of “supported autonomy” just hurts my head a bit…I can’t help but envisage some paternalistic Custer riding down on me and me pulling back on that bow. 😉
- weka 1.1
  
  31 August 2016 at 10:39 am
  
  When you’re physically dependent on someone for basic survival eg you wouldn’t eat if someone didn’t ‘support’ you, it looks different. For people that are dependent in various ways (myself included), the need for support is implicit (hence the argument against independence), so the question becomes what is the culture that that support is happening in and who is determining how that support happens?
  
  I can be autonomous but without support I don’t have the actual agency to call the shots.
  
  Also, the post is written in the context of state support which is largely focusses on independence. Some of that is from a well intentioned place, some of it from a cost cutting place. The push to independence is the neoliberal update on the patronising Custer approach of the past 😉 We need to move past both.
  
  btw, this stuff that Philip is naming is why I have huge concerns about the idea that under a UBI health and disability income currently adminstered by WINZ could be handed to Health and all would be good. Health comes with its own set of control culture.
  - Bill 1.1.1
    
    31 August 2016 at 11:21 am
    
    We’re all physically dependent on one other to some degree or other for our basic survival. So yeah, independence is a crock and everyone relies on support.
    
    The point I was trying to make isn’t at variance with anything you’ve written in your comment…I’ll try again.
    
    “Supported autonomy” as a stand alone phrase implies (to me at least) that the supporter, or the one doing the supporting, gets to, or has got to, set the limits on the autonomy (that being the contradiction) and it is they who then offer or impose whatever “support” they deem suitable or necessary – as opposed to the person who is seeking autonomy setting those limits and determining the required level of support .
    
    In other words I’m seeing the term as implying a degree of paternalism. That’s all. It’s just my interpretation of a phrase.
    
    As for the piece itself – I agree with what’s being said and note that Philip Patson talks about facilitating supported autonomy. That qualifier makes all the difference to my way of thinking.
    - Draco T Bastard 1.1.1.1
      
      31 August 2016 at 1:39 pm
      
      “Supported autonomy” as a stand alone phrase implies (to me at least) that the supporter, or the one doing the supporting, gets to, or has got to, set the limits on the autonomy (that being the contradiction) and it is they who then offer or impose whatever “support” they deem suitable or necessary – as opposed to the person who is seeking autonomy setting those limits and determining the required level of support .
      
      Nope.
      
      The idea would be that the person needing support get that support when they ask for it. That support allows that person to then operate independently at all other times. The support is there to help them do that because otherwise they simply wouldn’t have the time/physical capability to operate even that independently.
      - Bill 1.1.1.1.1
        
        31 August 2016 at 2:56 pm
        
        I know what the idea is Draco. I also know what the term implies (for me).
        
        So let’s try – “autonomy” is always “supported” in one way or another. If it wasn’t, we’d be looking at independence based around notions of individualism and a likely quick exit from this world.
        
        So maybe the author could just have used the term ” autonomy” without the redundant “supported” since it can imply a faux or incomplete state of autonomy that’s been determined by some other.
  - Draco T Bastard 1.1.2
    
    31 August 2016 at 12:53 pm
    
    btw, this stuff that Philip is naming is why I have huge concerns about the idea that under a UBI health and disability income currently adminstered by WINZ could be handed to Health and all would be good.
    
    Why would it be put under health?
    
    IMO, it’s still under Social Development.
    
    That said, the top down ‘control culture’ that is endemic to capitalism needs to be changed anyway.
    - weka 1.1.2.1
      
      31 August 2016 at 1:03 pm
      
      “Why would it be put under health?”
      
      I guess because people see the supplementary benefits related to health and disabilty as being health/disability issues instead of income ones. Plus people are desperate to get rid of WINZ. But I don’t really know, you’d have to ask the people who’ve made those arguments.
      - Draco T Bastard 1.1.2.1.1
        
        31 August 2016 at 1:43 pm
        
        WINZ is one part of MSD, social support is another despite it being done at WINZ. Get rid of WINZ and the social support part would still exist.
        
        weka 1.1.2.1.1.1
        
        31 August 2016 at 2:39 pm
        
        I guess it depends on whether you see it as income issue or a social support issue. I see it as an income one myself. People with disabilities that prevent them from being able to work will not benefit from a UBI unless their unique function is taken into account. This is true of people raising kids on their own too, which makes it more obvious that it’s not a Health issue.
        
        The issue isn’t that those people need social support, they just need access to income that is equitable. If the point of income is to ensure that people have their needs met, and if one of the points of a UBI is to ensure that access without all the patronising and controlling bullshit that goes on at WINZ, then it follows that people with disabilities shouldn’t have to endure more of that bullshit after the introduction of a UBI just because they have a disability. So treat it as income, not social support. (there may or may not be social support needs as well for individuals or groups).
        
        Draco T Bastard …
        
        31 August 2016 at 3:57 pm
        
        Social support could be provided either with money and thus allowing the person to choose how they got that support or through directly through the Ministry. Either way, it has to be determined if they’re entitled to that extra support. Of course, once it has been determined then they should get it permanently without having to continually justify it as happens now.
        
        It’s still social support and not work which is what WINZ focusses upon.
        
        weka …
        
        31 August 2016 at 7:19 pm
        
        WINZ is also there to provide income access to people who can’t work. Always has been. MSD don’t do that. If WINZ is to be disbanded completely, then it requires thought on what should happen to the income management of people that need that.
        
        Draco T Bastard …
        
        31 August 2016 at 7:19 pm
        
        WINZ is part of MSD as the large Coat of Arms up in the corner shows.
        
        It’s not so much that WINZ will be disbanded as that it will be changed. IMO, It will no longer have work focus that it has now.
    - Sirenia 1.1.2.2
      
      31 August 2016 at 6:51 pm
      
      A UBI could be under a whole new UBI Ministry. Perhaps a Ministry of autonomy and wellbeing!
      - weka 1.1.2.2.1
        
        31 August 2016 at 7:21 pm
        
        Nice one Sirenia.
      - Draco T Bastard 1.1.2.2.2
        
        31 August 2016 at 7:24 pm
        
        Possibly but I’d throw it into IRD.
  - Matthew Whitehead 1.1.3
    
    31 August 2016 at 8:18 pm
    
    Which is a totally reasonable concern and does need to be seriously addressed within any UBI proposal, preferrably in close co-operation with people who actually rely on the current forms of state assistance to live their lives.
Lanthanide 2

31 August 2016 at 11:05 am

Ergo more, perhaps unnecessary dependence now will equate to less indendependence henceforth.

I think this has got an error in it?

Shouldn’t it say:
more, perhaps unnecessary dependence now, will equate to less dependence henceforth
- weka 2.1
  
  31 August 2016 at 12:38 pm
  
  Not sure Lanth. I took it to mean that the system’s impostion of values (‘independence’) actually causes harm to people.
  
  eg the ‘independence’ ethic says if you let people be too dependent they won’t become independent, and because independence is the most important thing we have to stop that irrespective of the consequences eg they get harmed in the process. It’s very similar to the neoliberal ‘welfare is an addiction’ meme. Ideology trumping real life and fucking people up in the process.
  - marty mars 2.1.1
    
    31 August 2016 at 7:52 pm
    
    I thought it meant that
    
    if I try to be more independent now this will be a stretch and could cause me, over time, to lose the ability to do some things I can do now and thus my dependence will be increased in the future. So being more independent now will likely contribute to increased dependence in the future – therefore being more dependent now could mean more independence later.
adam 3

31 August 2016 at 2:17 pm

Two things cutting over each other in this post weka. First is the desire to be a autonomous individual which drives much of the modern thought process, and in this case a classical example of it’s failings. Secondly an acknowledgement that mutual aid, would benefit people more than some sort of esoteric desire to be self released.

I’m not sure I agree with the authors terminology, as it seems confused at times. It’s like he does not want to use the words mutual aid, as that would expose the solid left basis of his argument. Many disabled organisations and support networks use the methodology of mutual aid, because it works. Especially in the face of power, when you have very little, or no power.

It has this extra bonus – of making those involved feel empowered.
- weka 3.1
  
  31 August 2016 at 2:49 pm
  
  Can you explaing what mutual aid is adam, I’m not familiar with the term or concept.
  - adam 3.1.1
    
    31 August 2016 at 2:58 pm
    
    Good summation from Moya K. Mason
    
    “Kropotkin’s most famous book, Mutual Aid, maintains that cooperation within a species has been an historical factor in the development of social institutions, and in fact, that the avoidance of competition greatly increases the chances of survival and raises the quality of life. He contended that mutual aid is a factor that is both biological and voluntary in nature, and is an enabler of progressive evolution. Without it, life as we know it could not exist. This can be also seen in the animal kingdom. Horses and deer unite to protect each from their foe, wolves and lions gather to hunt, while bees and ants work together in many different ways. Kropotkin said that mutual support is an established fact within the feathered world, with eagles, pelicans, vultures, sparrows, and other fowl, collectively searching for and sharing food. Some species of birds even gather together at the end of the day to sleep. ”
    
    For more http://www.moyak.com/papers/peter-kropotkin.html
    
    Or this definition
    
    Mutual Aid.
    
    Mutual Aid is a term used to signify the concept of voluntary reciprocal exchange of resources and services for mutual benefit. It can take place between individuals and groups. The term comes from the book “Mutual Aid : A Factor of Evolution” published in October 1902 by Peter Kropotkin. In it, Kropotkin tried to show that cooperation is as important as competition in the processes of evolution and social organisation. Mutual Aid is therefore an important principle of egalitarian communal living forms and non-heirarchical community life. See also “Fields, factories and workshops“.
    - weka 3.1.1.1
      
      31 August 2016 at 6:16 pm
      
      Interesting, and I like what they are saying. I don’t see that as being incompatible with supported autonomy though. I’m also not sure how you could have a working concept of mutual aid without supported autonomy, especially given the imperative of reciprocity. Some people are dependent. We shouldn’t shy away from that, or see it as a problem.
      
      Can you share some examples of disability organisations that use mutual concepts?
Kay 4

31 August 2016 at 2:51 pm

Interesting post.
I’m a firm believer in as much independence as possible, and the option of asking for help if it’s needed. But that means practical assistance has to actually exist somewhere in order for that choice to exist.

When your very much a disability has been decreed overnight not to be a disability by the DHB for purposes of home help?
When you’re under 65?
When you have no dependents?
When the alleged “disability allowance” doesn’t even cover your medication costs yet alone any home help or medical treatment?
When ACC is out of the equation?

“Choice” is supposedly what we, the public want. Oh that’s right, only if we can pay for it ourselves?
- Draco T Bastard 4.1
  
  31 August 2016 at 4:02 pm
  
  “Choice” is supposedly what we, the public want. Oh that’s right, only if we can pay for it ourselves?
  
  The whole point of the pricing mechanism is to price people out of getting products/services on the market and thus decreasing demand for those products/services and thus ensuring that demand doesn’t go above available resources. This is why many things should be a government service that’s freely available to all. Health and support services are obviously included in that as ‘the market’ will obviously preclude those who need such services to not be able to get them.
Philip Patston 5

31 August 2016 at 6:45 pm

Let me add a little context. The reason I couple the words “supported” and “autonomy”, agreeably oxymoronic, is because I am looking at the role of case managers or needs assessors in terms of the system they represent, not the outcome of the person with whom they work.

Personally, I’m quite able to be autonomous without support. I know what I need, what I’m eligible for and how these eventuate into an outcome. But many don’t.

My model is a challenge to those working in the system to support people – in particularly those coming to terms with serious, chronic injury or parents of newly born babies with support needs – to make informed choices about independence and dependence.

I’m deliberately redefining autonomy as the ability to make the choice. For those new to our systems, or those brainwashed into independence because of the system’s bias, support to do this is necessary. Once they are autonomous (choosing the aspects of life in which they will be independent or dependent), they’ll no longer need support.
- weka 5.1
  
  31 August 2016 at 8:30 pm
  
  Interesting. I think I really misunderstood the post then. Are you using ‘support’ to mean something quite specific, eg the support to know one is entitled to assistance and how to access it? Rather than support also being the assistance itself (eg income or physical assistance).
  - Philip Patston 5.1.1
    
    31 August 2016 at 9:22 pm
    
    Yes, absolutely, weka, it’s about the support to be autonomous, ie. make the choice. It’s no more than that, unless other support is chosen!
    - weka 5.1.1.1
      
      1 September 2016 at 11:29 am
      
      Ok, great to get clear about that. Thanks, very thought-provoking post.
The New Student 6

31 August 2016 at 9:32 pm

Everyone wants to be the master of their own destiny. Call their own shots. And so we should. Yet it seems to be the first thing we attempt to deny of each other. Strange.
Bill 7

1 September 2016 at 12:13 pm

And in related news…

“A new service will be trialled next year to help beneficiaries with diagnosed mental health conditions become independent and find work.

The two year trial is expected to cost $3.2 million and will be available in the Auckland, Waikato, Central, Canterbury and Southern regions.

Social Development Minister Anne Tolley says Work to Wellness will be a contracted service and will help around 1000 people a year.

She says it will provide coaching and mentoring, job search services and assistance to help people into work.

Beneficiaries will be able to opt-in through Work and Income, a referral from their GP or self-referring direct to the provider.”

https://nz.news.yahoo.com/top-stories/a/32498892/beneficiaries-will-be-helped-to-find-work/?cmp=st#page1