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Heba-Hagrass
Important Notice: As of 1 November 2023, Ms. Heba Hagrass (Egypt) has been appointed by the UN Human Rights Council as the current Special Rapporteur on the rights of persons with disabilities. This site now serves as an archive of the work and contributions of Mr. Gerard Quinn during his tenure. For the latest updates and official communications from the Special Rapporteur, please visit the UN Special Rapporteurs Page.

Social Inclusion, Disability and Human Rights.

Keywords: , , , ,

Gerard Quinn's presentation before the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability in Australia. (December 12, 2023)


Contents:

  1. Evolution from the 'medical model' to the 'social model' to the 'human rights' model and the place of Inclusion.
  2. The UN CRPD - New Groundings: Personhood, Inclusion and ending Segregation.
  3. Article 19 - Reflecting and Advancing the Ideas of Personhood and Inclusion.
  4. Conclusions.

My topic is inclusion - its place in human rights and its relevance to a future disability policy imagination. 

In essence, my topic is about framing - and the re-framing - of disability policy debates within human rights.  Ultimately this comes down to hard choices in domestic law and policy.  So it matters to be able to clearly grasp why the frame has switched, what new policy defaults it leads to and with what practical effects.  When a major switch comes along then it can call for a deep re-evaluation of past practice. 

Naturally, the focus of attention is on the UN Convention on the Rights of Persons with Disabilities (UN CRPD).  And this is, in large measure, due to its shift of attention toward a broader framing of inclusion.

Treaties come about because of large movements in the world at the level of ideas and practice.  Treaties reflects these movements - crystallizes them - and then helps accelerate change.  In a way, a treaty gives expression to the change in underlying values. 

It would be wrong to think the treaty alone gives rise to them - they are already evident in State practice around the world.  The treaty reflects them and gives shape to them.  The shift taking place in the world - over the last 30 years or so - is away from a 'medical model' of disability toward a 'social model' and onwards to the 'human rights' model.  In the process, things that would have seemed 'natural' 30 years ago like institutions have no place in the new imagination - with direct implications for law reform.

I like to think that, optimally, States are motivated to conform with a treaty such as the UN CRPD not just because of the legal status of the instrument but because the underlying values strike a chord.  You conform - you change - because you want to and this native commitment goes wider and deeper than conforming simply to avoid legal entanglement. 

In the process, the legal imagination too is widened and deepened.  As Oliver Wendell Holmes once said, the law is the 'external deposit of our societies' morality.'  When the underlying moral position changes - as it certainly has over the past 30 years or so worldwide in the field of disability - then it is natural to see the shape, content and purpose of public policy adapt.  

Holmes also insisted that 'the life of the law is not logic, it is experience.'  I am of his mind.  The law may lag behind evolutions in thinking - but ultimately it catches up. The Legal Realists have long insisted on this.  Sooner or later the 'operation systems' catches up with the 'myth system' of law. 

And I think that is what the CRPD does - it forces a closure of the gap between a 'myth system' that has changed and an 'operation system' that is still grounded in the past.  To some extent this lag is to be expected.  But the overall arc of change bends toward a new law reform agenda founded on wholly new predicates.

In the time available I would like to do three things.

First of all, I want to reflect back on what preceded the UN CRPD - on the 'mischief' of the 'medical model 'it was designed to tackle.

The great ambassador Don McKay from New Zealand who chaired the drafting process was always at pains to point out that the 'human rights' model of disability reflected and built upon the 'social model' of disability.  It proves important to properly understand the 'social model' in order to appreciate the 'human rights' model - and especially the pride of place given to inclusion.    

Secondly, I want to reflect on the drafting of the UN CRPD.  Australia played an outsized role in that process - a fact you can be very proud of. 

A majority of us - myself included - had rather simplistic expectations about how that process would unfold.  We all thought it would be just one more 'thematic equality treaty' to add to the existing UN pantheon of such treaties.  It quickly became more than that.  Fresh thinking based on the underlying 'social model' led to an emphasis on new approaches. Eventually, the text went beyond traditional and narrow understandings of equality to emphasize new groundings and especially personhood and inclusion.  Let me trace how and why that happened - and its practical implications. 

Thirdly, let me take a practical example.  The right to live independently and be included in the community can be parsed formalistically.  But that does not capture the essence of the right - or bundle of rights - embedded in it. I think it only really comes to life - and makes sense to a legislator, policy maker and judge alike - when viewed through the lens of the new predicates of personhood and inclusion. 

Segregation - in its most extreme form of isolation in a congregated setting - might make sense when viewed through the lens of the 'medical model.'  But it makes no sense when viewed through personhood and inclusion- a point grasped by the US Supreme Court over 20 years ago (Olmstead v LC). 

Why, how is segregation made problematical?  And with what law reform implications?  Like all re-framings, the switch away from the 'medical model' helps one 'see' a newer generation of issues such as what do community based-services actually look like?  One might view Article 19 as a test case of inclusion.


1. Evolution from the 'medical model' to the 'social model' to the 'human rights' model and the place of Inclusion.

Ambassador McKay was right.  One cannot really understand the 'human rights' model of disability without some grounding the 'social model' - or models - that preceded it. 

And those 'social models,' the British, the American and the Scandinavian, all had one common target - the so-called 'medical model' of disability.  The medical mission, as you know is, at its heart, profoundly humane.  It is all about measuring deviations from a norm (how our species typically function) and intervening to 'fix' the deviation. 

The sins of the medical model in the purely medical field were bad enough especially as they were overlayered on top of massive power imbalances.  But the real sin of the 'medical model' was the export of these default positions (disability as deviation from a norm, a focus on 'fixing' the person and a resulting objectification of the person) to a wide array of unrelated policy areas such as employment, education, housing, social support, etc.  While this wasn't directly the 'fault' of the medical profession, it encoded a similar default position in these outlying policy domains.

Impairment thus defined the person - not the other way around.  And our lifeworld (employment, education, transport, etc.) was designed to admit those who conformed most to 'species typical functioning.'  The default for others was to be excluded or segregated.   And any resulting exclusion or segregation could then be framed as a 'natural outcome' of the reality of the disability - just something that followed ineluctably from your own condition.  A very subtle way of 'problematising' the person.

It was this ethic of exclusion or segregation - and the ease with which it could be portrayed as natural or inevitable - that so vexed the advocates of the various 'social models' in reaction.  That is why each of the 'social models' - in their own way - critiqued the 'medical model' and especially the ethic of exclusion encoded within it. 

Ultimately, all the 'coal models' came down against a fixation on 'impairment' (the deviation from the norm) as the basis for rational policy-making. Instead, the 'social models' favour a wholly new policy default in favour of seeing the person behind the mask of the impairment and beginning the discussion about policy from that baseline. 

This framing - or re-framing - is quite crucial.  Time and again you will see the UN CRPD Committee rail against an impairment-fixated policy stance.  This is what they are getting at.  They are not denying the existence of an impairment.  Still less, are they saying that Government should ignore impairments. But they flip the normal assumption - away from excluding someone who does not conform to the norm and toward widening the terms of entry and participation in the lifeworld to suit the diversity of the human condition. 

One more subtle but crucial point.  This 'natural' default within the 'medical model' toward exclusion rhymed with traditional understandings of equality law.  I think it is one of the reasons it is so hard to reveal and reverse. 

Traditional equality law and theory is really all about even-handedness in the functioning of the State.  It is all about the justification (if any) for the relative treatment of different groups by the State.  It can be reduced to how we view and handle relativities - it is interested in how one group is treated relative to another when in a comparable situation. 

More to the point, the 'material difference' of impairment could always be pointed to within this traditional approach to equality to defend, justify, warrant or even demand separate or segregated treatment.  So segregation could be made to look compatible with a certain approach to equality theory and practice.

Think about how this position dovetails with the 'medical model.'  The 'natural' exclusion of persons with disabilities on account of the 'material difference' of their impairment was just that - 'natural.'  In a way it ratified the systemic inequalities marking persons with disabilities apart and then working to keep them apart.  There was always an unnatural rhyming between the 'medical model' of disability on the one hand with traditional understands of equality on the other.  Both cemented into place the 'naturalness' of one's exclusion. 

Of course, equality law and theory has not stood still.  The great Oddny Arnardottir - a High Court judge in Iceland and a substitute member of the European Court of Human Rights - paints a more evolutionary picture of the equality ideal in international law as it applies to persons with disabilities.  She puts this first phase (described above) down to 'equality as sameness.' That is to say, if there is any 'material difference' then the resulting inequalities rest on you - not on any background policy choices.  Again, a very subtle way of problematizing human beings as Theresia Degener puts it. 

The next phase she calls the 'difference' approach whereby human difference is openly acknowledged, positively valued (and not just as a deviation from a norm) and steps are taken to accommodate it.  The American idea of 'reasonable accommodation' (something that started its famous career on the 'ground' of religion under the 1964 Civil Right Act) obviously fits here.  You in Australia were among the first in the world to give this statutory recognition. 

And the third phase, the one we are currently in, she calls the 'multi-dimensional disadvantage' phase. This is a bit of a mouthful.  But unpacked, what it essentially means is a rejection of a narrow or juridical conception of equality as something fixated on the relativities of treatment.  Implicitly, that means a rejection of the view that sees 'material difference' like impairment as justifying or even warranting segregation. 

This third rendering of equality theory takes the focus away from the impairment - and places it on the person.  It means opening up the lens of equality analysis away from its traditional focus on the here and now (a synchronic framing of how a person presents in the moment) to an opening up on their life journey (how did they get here - a more diachronic approach). 

Now, that may not mean much to a court since the work of courts is generally focused on more traditional legislation that still focuses simply on the relativities of treatment.  But it means a lot to a legislator or a policymaker who suddenly becomes sensitized to the history and causes of exclusion - and its lifelong impacts.   That being so, it frees up the policy imagination to tend to the deeper causes and effects of exclusion.  

And that leads to - or should lead to - a commitment to reverse these processes that were driven by the 'medical model' and to build a much more inclusive society.


2. The UN CRPD- New Groundings: Personhood, Inclusion and a rejection of Segregation.

Interesting - but safely confined to the dusty halls of social science? Hardly.

How did this play out in the drafting of the UN CRPD - and how is the switch manifested in the text and jurisprudence of the treaty monitoring body?  And why or how has segregation in particular become so toxic within this new imagination?

A funny thing happened on the way to the drafting forum.  We all expected (myself included) the drafting process would be a highly mechanical one - where are the obstacles to the equal enjoyment of human rights, how could the relevant treaty obligations be tailored to dissolve them and how would we monitor implementation? In other words, we under-appreciated the shift to the human rights framing. 

It was civil society that widened the conversation and made us appreciate the true depth and implications of the switch to the human right framing. 

Essentially, we were asked 'why treat the symptoms of unequal treatment without treating its underlying causes?'  After all, the symptoms were likely to re-appear if the causes were not attended to. 

That is the real reason why the so-called 'personhood' and 'inclusion' provisions became central.  So much so, that they are now routinely pronounced to be the 'very object and purpose' of the convention. 

Traditional human rights are all about the public/private distinction.  There tends to be an unwritten assumption that if people are protected against power (especially public power) then that is enough.  They can then fend for themselves.  After all, we are assured a right to pursue happiness - but not happiness itself.  The drafting process of the CRPD showed that that was not enough.  Assumptions that held true for most people (or many people) did not hold true for persons with disabilities.

For one thing, the humanity of persons with disabilities was routinely discounted - in every legal culture in the world.  They were viewed - reduced - through the lens of impairment.   That had to be fixed first.

For another, freedom has an ecosystem that assures one of social connectedness - of belonging.  That too did not apply to persons with disabilities and had to be intentionally stitched back together. 

We are really talking about two bedrock provisions in the Convention - Article 12 on the moral and legal agency of persons with disabilities and Article 19 on one's right to live independently and live in the lifeward connected with others.  These are the ratchets that move upward our understanding of equality and especially the concept of 'inclusive equality.'

Sir William Blackstone once quipped that 'upon marriage women suffers 'civil death'.' She disappears - in law - as a person.  I have often said something similar happened to persons with disabilities over the past centuries and everywhere in the world.  Again, as if to emphasize the impact of the 'medical model', impairment was used negatively to take away moral and legal agency and to displace it into the hands of third parties.  Interestingly, even when it was not legally displaced it was treated as if third parties had the legal right to determine one's fate.  It didn't matter if you lived in China or Germany or Spain. 

Civil society groups were adamant that this form of legal invisibility - the implicit discounting of the humanity of persons with disabilities - was, if not a cause of structural inequality, certainly a factor explaining its persistence.  Therefore, one of the big challenges of the drafters was how to end this form of 'civil death' and, more importantly, how to give 'civil life' back to persons with disabilities. 

One aspect of Article 12 hardly ever garners comment.  It breaks the tie that has linked 'impairment' to a presumed lack of capacity to make decisions for oneself.  Lost in the fog of legal analysis is the fact that Article 12 also builds on a social or relational conception of the person.  We are how we are because of the range and depth of social capital in our lives. We all take cues from each other in our decision making - especially those close to us.  Our personhood in this important sense is shared.  That is what makes the concept of 'supported' decision-making so interesting. It is not primarily about State-led or State-directed support services - it is primarily about embedding people in layers of naturally occurring social capital to develop their competence and confidence in decision-making.  To put it bluntly, it is about social inclusion.

In this regard, Article 12 reflects an undercurrent - inclusion - running through the entire Convention.

This is not really new in human rights. If we zoom out or back in time to the Universal Declaration of Human Rights (1948) then we will see an emphatic assertion (Article 29.1) that everyone owes duties to his/her community "in which alone the free and full development of his [or her, or their] personality is possible."  This does not undermine individual autonomy.  This just reminds us of the obvious - I am who I am because of the range and depth of my immersion in my community.  That might be taken for granted for most people.  But is assumes special importance in the context of a minority denied these opportunities because of the invisibility due to 'medical model.'

Therefore, inclusion is a defining theme of the entire UN CRPD.  Every right, every obligation, is attuned to the achievement of inclusion.  To be sure, it is a form of inclusion that takes personhood and choice seriously.  Nonetheless, many of the rights and obligations are configured to remove obstacles to human inclusion and so lay the groundwork for belonging and active citizenship.

What of Article 19 when viewed through the lens of personhood and inclusion?  Formulaic or even legalistic understandings of Article 19 don't even begin to express the profound value shifts that it represents.

Lying back of Article 19 is a conception of 'home' which is both intensely private and intensely public.   

Home is a place of repose, a place where identity evolves in conjunction with others, a place of intimacy.  It provides the 'material scaffolding' of self - which is why the small things like a picture or a flower vase are so important.  Ideally in our homes we see a reflection back of who we are.  It is precisely because of this connection between home and human personality that home is one of the most protected spaces under the European Convention of Human Rights. 

And our homes are generally situated to connect us with the community. Our front door beckons others in. Again, we are who we are because of this aspect of social connectedness.  Home positions us to connect - and on our terms. A tool to advance belonging.

The point I am trying to get at is that the Convention owes a lot to traditional conceptions of the atomistic individual.  But it also owes a lot to the social conception of the 'self' - a person who become a person through quality social interaction.  But when you think about it, the level or depth of social interaction required has been conspicuously absent for many persons with disabilities throughout the world and mainly because of their exclusion or segregation. 

It follows that a programme of inclusion - which is implicit in human rights - needs to become much more explicit. Human rights are about more than protecting people against power. They are about enabling people to assume power over their own lives and through being given the opportunity to grow in free interactions with others.

Formal rights on their own without the animating value of inclusion will not succeed. That is why nearly every single right in the CRPD Convention has an inclusion angle. It is not just about the rights as ends in themselves. It is about using the rights as tools to pierce open spaces hitherto closed down.

Those of you who follow the jurisprudence of the UN CRPD Committee will see how all of these themes interweave. 

This is most obviously the case in the CRPD Committee's General Comment on Equality (2017). One might have expected a disquisition on the nature of traditional theories of equality and how they might be rehabilitated to reverse the 'medical model.' Instead, the Committee explicitly framed its approach to equality as 'Inclusive Equality.' Tellingly, it rested its framing primarily on 'recognition' - meaning the moral agency of legal autonomy of persons with disabilities.  So, its theory of equality is no longer 'morally empty' but rests on a profound assertion of the common humanity of persons with disabilities regardless of impairment.  The Committee built on that foundation by emphasizing the accommodation of difference. When you think about it, this is an insistence that impairment, as such, should not hide our common humanity and that it is this that is morally prior - not the impairment.  And yes, the General Comment on Inclusive Equality talks about stitching together formal or juridical theories of equality with more robust substantive theories that stray into distributive justice - or economic, social and cultural rights. This links 'inclusive equality' with 'egalitarianism'. 

It has been often remarked that the UN disability treaty does something envisaged in the Universal Declaration of Human Rights as far back as 1948 - something disrupted by the Cold War. It creatively blends together civil and political rights with economic, social and cultural rights. And, in the process, it subtly changes how we think about economic, social and cultural rights. How so?

Reflect on the reality that these rights - economic, social and cultural - were actually part of the problem in the past. That is to say, the way they framed 'impairments' fitted perfectly with the medical model. Because persons with disabilities didn't 'belong' in the mainstream they were cushioned at the edge of society with 'compensatory' schemes. This resulting exclusion was said to have had nothing to do with a positive policy choice - it was the natural entailment of the impairment. Since a significant amount of largesse was directed for this purpose, it was churlish to complain. Note, very little of the largesse was aimed at creating space to include persons with disabilities. Instead, they assumed marginalization and sought to mitigate its worst effects.

What a turnaround under the CRPD! 

Now, economic, social and cultural rights are specifically tasked to play their part in engineering space for human difference and in building much more inclusive economic and social spaces. One might say this was the original idea behind such rights - until diverted by the 'medical model' into the narrow task of maintenance.

Now, of course, that does not take away from the diversity of economic and social systems worldwide.  You have famously chosen to work with markets in Australia - as is your prerogative. I hope it succeeds. Others work with the 'social economy' as in the European Union. Whatever posture you take toward the mix of market and other forces, it has to be aimed at a philosophy of inclusion and to visibly enable persons to move forward.

And the shift toward inclusion in understanding rights - especially economic and social rights - doesn't detract from the necessity of making hard allocational decisions and the necessity of equity as between different groups and even within the disability population. 

International law does not dictate what kind of systems you put in place - market-driven or otherwise. But there are some baseline parameters regardless of the system chosen. They cover notions of 'progressive realization' of these rights.  Essentially, matters should not be left to chance in a vague hope or expectation that things might improve and therefore future circumstances might allow for change. No, there must be a deeper level of intentionality, a stock-taking of where things are at, a clear statement of the end-goals and an understanding of the means, tools, timelines and resources needed to move the dial and an institutional architecture designed to oversee the change. Most of all, those directly affected should be involved in co-producing any future plan for progressive achievement.   Importantly, they also cover situations of deliberately retrogressive measures during periodic retrenchments due to, e.g., economic necessity.  Such measures should spare those most vulnerable and leave intact the solid inner core of each substantive right. A huge intrusion into the prerogatives of States? I don't think so. More like common sense desiderata to demonstrate the sincerity of a commitment to change.

In sum, the assumption about social inclusion that underpins human rights is brought to the surface in the UN CRPD. This is why the overarching theme of equality is now styled 'inclusive equality' by the UN treaty monitoring body.  That is to say, each human right has to be animated by a philosophy of inclusion. This is visibly seen in both Article 12 and Article 19 - but suffuses the entire treaty. Ending segregation is therefore made urgent and a key goal of the CRPD.


3. Article 19 - Reflecting and Advancing the Ideas of Personhood and Inclusion. 

Article 19 is a perfect microcosm of these forces: personhood, social inclusion and inclusive equality.

One result of the 'medical model' in the past was a series of public policy choices to provide support to those with significant 'material differences' in impairment in separate, segregated or congregated settings or institutions.  So much so, that in the public mind, 'long term care' became synonymous with institutionalization. Here the policy imagination has remained narrow for the past 70 years or so.

How does Article 19 move away from this? 

First of all, it is grounded on moral agency - the right of the person with a disability to choose where to live, how and with whom.

Now, we can't all live in the leafy suburbs of Sydney. That’s not the point. We should have some say where we end up and in what kind of living arrangement.

Interestingly, although it is grounded on moral agency and choice, Article 19 does not give rise to an individual right to choose to live in or be segregated to an institution. As the prefatory language to Article 19 insists, one has an equal right with others to 'live in the community.' So it is not a question of whether one lives in the community but how. 

Does this leave open space to choose to live in a private institution funded by oneself and not by the State?  Perhaps, so long as the choice is freely made. But even then, there may well be public policy reasons why even this choice is not allowable by the State.

Secondly, think of Article 19 as focused less on bricks and mortar and more on the concept of 'home.' And think of the defining characteristics of 'home' a place of repose and a place for social connectedness. How does congregating persons on the basis of a shared trait like disability correspond to 'home'? How does the environ provide any 'material scaffolding' to my sense of self? How do the material conditions as well as the cultural factors turn the environs into something different than a 'home'? If you grasp this then it is easy to understand the US Supreme Court decision that famously characterized institutionalization as unequal treatment in the provision of public goods and services and therefore as discrimination, simpliciter, under Title II of the Americans with Disabilities Act (Olmstead v LC, 1999).

Third, the switch in policy defaults will not happen overnight. Think of it this way. We have imagined, designed and implemented a service paradigm to match the segregationist or institutionalist default. There is nothing natural or inevitable about this - although it has the air of being natural or neutral. If we switch our policy defaults in favour of thriving in the community then we have to turn around the large ship of services to make it a reality. This is where all the action is in the future - once the policy switch away from segregation is made. What matters is a clarity of purpose to end segregation - followed by the creation of an intentional programme to achieve progressively the kinds of systems changes needed to give it reality.

Two key outputs of the UN CRPD Committee are especially noteworthy in this regard: its 2017 General Comment 5 on Article 19 (right to independent living[1]) and its recently issued Guidelines on Deinstitutionalization (2022).[2] 

The 2022 Guidelines of the UN CRPD Committee begin by framing institutionalization as a form of unequal treatment or discrimination contrary to Article 5. Think about this for a moment. One of the impacts of the 'medical model' with its fixation on impairments was to treat congregated settings as almost a natural entailment of the impairment. This was explicitly rejected by the US Supreme Court over 20 years ago when they framed such institutions as 'unequal treatment' in the delivery of public services contrary to Title II of the American with Disabilities Act. 

Now, the UN Guidelines explicitly follows this line of reasoning. Institutionalisation - in whatever form - violates the notion of 'inclusive equality' embedded in Article 5 (equality and non-discrimination). This is the bedrock assumption. Article 19 just builds on that with a very positive philosophy of thriving in one's home and connected with the social capital of one's community.

Further, the Guidelines specify some of the objectionable features of institutions - whether large or small - and comes down clearly against small group homes either as an end point or as a transitional measure. This makes perfect sense if the background assumption is the unacceptability of using impairment as a way of determining where people live just because they share a trait like disability. 

One might counter that small group homes is not like putting a fan of Manchester United (me) together with a fan of Arsenal (not me). It might be countered it is perfectly acceptable to put persons with similar traits - and similar material needs - together for administrative and cost efficiency purposes. Aside from the fact that congregated settings always heighten risk, this misses the point. The point is that the CRPD points to the need for a completely different policy imagination - one based on personhood and social inclusion. And this is conspicuous by its absence if congregated settings are accepted as an option for the future.

All well and good. But our service systems are not set up to achieve this. Perfectly true. All rights have an underlying ecosystem. Even the formal right to fair trial presumes the existence of courts. Likewise, the shift toward inclusion means an examination of how fit for purpose our service system is and what it should gravitate towards.

The Guidelines are keenly alive to the need for a change in how services are imagined and delivered. They assert that the central element in any new service paradigm has to be the moral agency of persons with disabilities. To that end, it calls for devolved budgets (with supports) to be granted to individuals and more intentional efforts made to broaden the range and types of services on offer. Something I know you are doing here in Australia and which is not free from problems. It asserts that any new assessment criteria (for supports or benefits) should not be based exclusively on impairments but on the needs of the person to take charge of their own lives and to connect with their community.

Further, the Guidelines specifically call for a rational workforce strategy to identify current and projected workforce needs and development. Interestingly, the Guidelines allow for family involvement and support but only on the express consent of the individual with a disability. Even though Article 23 (respect for home and family) makes no express allowance for it, the Guidelines call for family support to enable families to help them meet their support-related responsibilities. 

So, clearly the CRPD Committee grasps the need for systems or 'structural change' in how services are imagined and delivered. This is where the global debate will be for the next 10 or 20 years. It will not be confined to whether congregated settings are a good or a bad thing. That train has left the station. It will be on how our eco-system needs to change to give effect to formal rights. 

So there are two sides to change. There is the crystal clarity needed to commit to end segregation and there is the process needed to initiate systems changes to make this a reality. The world is on this transition. In the next six months two sides of the UN house will come forward with visions of future services to advance personhood and inclusion. We now have the means to do this which we didn't have 20 years ago. What needs for the policy imagination to widen. The fact that we cannot immediately see where systems changes are needed to give this reality should not count as a bar to making the policy leap - it should be a spur to continually search for new ways and to join (lead) the international conversation on the same.


4. Conclusions.

Allow me to draw some strands together and make some tentative conclusions.

First of all, ideas have been shifting over the past 30-40 years. They have shifted - and continue to shift - even if there were no UN CRPD. The UN Convention confirms these movements and tries to clarify them. 

Secondly, the switch at the level of ideas from the 'medical model' to the 'social model' to the 'human rights model' has concrete implications with respect to traditional disability policy and especially its tolerance for segregation. The new predicates - personhood, inclusion and inclusive equality - all point away from segregationist solutions of the past.

Thirdly, the 'human rights model' places impairment in perspective. Persons with disabilities are to be approached first as persons with equal rights and expectations and secondly as persons with impairments that might require special attention. However, that attention must not be allowed to morph back into segregationist impulses. The new default is to treat difference as part of the human condition and to accommodate it - not to exacerbate it by emphasizing un-belonging.

Finally, new policy defaults will have to live with old policy defaults at least for a time. It will be hard to eradicate them from law and policy. Too much has grown up over time (especially in our service paradigms) to be simply airbrushed. But what matters is to commit to the new policy default, to a thoroughgoing examination of practices past and a commitment to re-build from the ground up. The 'myth system' has changed. There can be no going back to an even older 'myth system.' The real challenge is to close the gap between the new 'myth system' and an older 'operation system.' That is why a new vision of services needs to be built. That is the real challenge for Australia - and the rest of the world.

[1]  https://www.ohchr.org/en/documents/general-comments-and-recommendations/general-comment-no5-article-19-right-live#:~:text=Independent%20living%20and%20inclusive%20life,in%20line%20with%20universal%20design

[2] https://www.ohchr.org/en/documents/legal-standards-and-guidelines/crpdc5-guidelines-deinstitutionalization-including

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